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Sjogrens Topics => Living With Sjogren's => Topic started by: craigmosley on January 02, 2008, 02:10:59 PM

Title: Elise's Diary
Post by: craigmosley on January 02, 2008, 02:10:59 PM
Elise had her Methyl Pred today (over 30 mins).................and the Canular is OK........... ;D Yaaaaaaaaayyyy !!
She handled it very well............no upset or tears  :)
A few mouth uncers have poped up but the doctors will keep an eye on them.........

The Christmas tree's have to stay up a little longer than usual..............due to the rudhed christmas we had..........and Saturday we have the family comeing round again for a "post" christmas dinner..........which is fine...........BUT..........Dad is the chef......AGAIN  >:(............ha ha !!
Title: Re: Elise's Diary
Post by: Linda196 on January 02, 2008, 02:23:09 PM
That's our brave girl! Good for you Elise.

I hope that this marks the "upswing" in how you're feeling and how things are going with the treatment, and from now on, all will go well.

Dad, you must be a good cook, the people keep coming back!
Title: Re: Elise's Diary
Post by: Pooh on January 02, 2008, 03:12:18 PM
Elise I knew you could do it.  You are a very brave young lady and you will get well soon I just know it.  Bravo!!! Bibity Bopity, Boo!!!  You did it!!!!   Yea!!!!!!!!!

Hang in there Craig, the sun will shine soon. 

Pooh
Title: Re: Elise's Diary
Post by: Scottietottie on January 02, 2008, 05:59:08 PM
hey Elise - well done!!  ;D
Title: Re: Elise's Diary
Post by: lynnmarie219 on January 02, 2008, 07:21:32 PM
Yayyyyyyy Elise! You did it! I'm so proud of you! I hope you and dad have a wonderful dinner on Saturday!


Craig......Enjoy the Christmas trees a little longer...enjoy the time with your family....but please take some time out for you.....just a little time for rest!


Hang in there.....both of you!



Title: Re: Elise's Diary
Post by: ktfabian on January 02, 2008, 08:18:45 PM
Congratulations, Elise!

I have to tell you, I'm 46 and I often don't handle all that goes along with this disease as well as you do!

Enjoy your be-lated Christmas and take a moment to ring in the New Year knowing that we're all sending wishes that this year will be SO much easier for you.  (and we're saying lots of prayers for that, too!)

Hang in there Elise, and Dad too,
Tracy
Title: Re: Elise's Diary
Post by: Shari on January 03, 2008, 02:37:39 PM
Belated Merry Charistmas and a Happy New Year!!
Title: Re: Elise's Diary
Post by: LenV on January 03, 2008, 06:13:44 PM
Elise,
that was so brave!  I'm so very proud of you!   :) :) :)

Craig, it's incredible how you are handling this.  I'm very proud of you too!   :) :)

Billye
Title: Re: Elise's Diary
Post by: Rania on January 03, 2008, 06:28:30 PM
Brave girl!
Enjoy the Christmas celebration now. And good luck in the future.
Be proud of yourself. Many in here are proud of you!

Gentle hugs,

Rania
Title: Re: Elise's Diary
Post by: craigmosley on January 04, 2008, 12:42:02 PM
Thanx for the support............cant wait for elise to see it.........

Thursday 3rd Jan

Elise had her "Goblins" today...........over 5 hours........and the MethalPred..........no tears again
We set of at 8am and got there for 9..............set off for home at 10pm and got back at 11pm..........what a day.....


Friday 4th
"Goblins" again lol.............methalPred and Methatrexate................
Canular came out...................with out any fuss
A few tears today...................we have to stop in a few days while they do a muscle biopsy and fit a porta cath but the day after we will only have the MetalPred And Methatrexate.......so thats not toooooooo bad.

But............at the beginning of Feb we have to stay for 3 days.............."Goblins" over 2 days.............and Pamidronate over 3 ............it takes 6 hours for the goblins and 4 hours for the Pamidronate..................but the good news is that Pamidronate is only given once every 3 months..................

Dad will be with her............. ;D
Title: Re: Elise's Diary
Post by: elise on January 04, 2008, 01:19:40 PM
We met the doctors today.
Doctor jay is pregnant so she is retiring for a bit.
Thank you for supporting me.
I got through it, but mum and dad was there with me.
I dont think i will be able to go through it alone.
Thank you ever so much for going through it with me mum and dad!
I cant be any more greatful!
I have to have another canular again on friday!
But it will be out on the  same day................... done and dusted.
But then the week after will be the most upseting, no family and got to stay in overnight at the hospital.
We dont get internet connection there either so it is very boring.
Me and dad end up taking 2 carrier bags full of stuff because we are that bored.
i cant thank you enough for being there for  me everyone!
you will always be in my heart
love elisexxxxxx

Title: Re: Elise's Diary
Post by: itssue on January 04, 2008, 01:37:58 PM
Hi there sweetie,

You know you have got to be the bravest young lady I have ever known.  I'm so glad that everything went well for you.  I know that this is a tough battle, but you are so strong and such a fighter that I know in my heart you will win this battle.  Stay strong!!!

God Bless you and your family,

Sue
Title: Re: Elise's Diary
Post by: Scottietottie on January 04, 2008, 05:39:12 PM
Hi Elise  :)

One thing you know for sure is that you won't have to go through anything alone.  Usually a parent is allowed to stay overnight with their child but it can be very uncomfortable as they don't always get a bed and sleeping in a chair isn't great.

If you do stay overnight on your own - aren't there other kids to talk to or TV? I bet your parents would stay pretty well till you went to sleep anyway and then come in not long after you wake up so there wouldn't be time to be lonely.

Once upon a time they weren't so good about letting parents into hospitals and they were only allowed in during visiting hours which were quite short. I had to leave a 3 year old on his own when he had his adenoids and tonsils out and the first time I was left on my own in a ward I was 7. Somehow - we manage!!

You sound as though you've got great parents anyway.

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: Pooh on January 04, 2008, 05:53:27 PM
Hi Elise,
I'm so glad to hear that things went smooth this time for you.  You are being such a brave young lady for your Mum and Dad. 

I think this is hurting your Dad the most.  He loves you so much and it hurts him and Mum as much as it hurts you, maybe more.  But Mum and Dad's are like that. ;D

The overnight in hospital will be quite an adventure.  I remember on my last stay how interesting it gets especially at night when everyone is trying to be quiet and whisper, but they seem to make more noise than quiet. :D 

I hope all goes well for you and your Mum and Dad.  Don't forget to let us know how it goes, we are all rooting for you.  You are going to be so well, no one will be able to catch you.  You will be able to make those legs fly again. 

Hugs, Pooh
Title: Re: Elise's Diary
Post by: eyeamdry on January 05, 2008, 02:15:35 PM
Elise, I think you have become a hero to the members of this board!  Dad is right behind you as caregiver hero.
I haven't posted to you, but I always read you and your Dad's posts.  I hope this year will be a bit brighter for you.

Lucy

PS. I have a neice named Elise!  Your parents picked a very pretty name.
Title: Re: Elise's Diary
Post by: Cricket on January 05, 2008, 03:01:34 PM
I am sort of new to board, but read your posts, and even though I do not understand everything you are getting I can tell you are a real HERO!  It sounds as if you have had your share and a few other people's share.  I will pray for you, as I do for the entire board.

Hugs
Cricket
Title: Re: Elise's Diary
Post by: Shari on January 07, 2008, 12:47:19 PM
     if all of the bravery from your heart, your moms and your dads,  could turn into air, you could fill a big, beautiful, brightly colored balloon, and float around the world :D

     if you need something to calm you, something to lull you to sleep, something to take your mind off of things even for a moment, close your eyes and imagine what you might see while you are princess of the sky.

     if you see a shingled house with smoke coming out of the chimney, snow all around, a kitty sitting on the stoop, and a warm glow about it,  that is my house.  and if you look very close i am waving out of the window to you, the one with the pretty lime green curtain.  can you see me?

     love   shari
Title: Re: Elise's Diary
Post by: craigmosley on January 10, 2008, 02:04:29 PM
Methyle Pred (an hours worth) and methatrexate again on Friday..................but the good news is that we have Hydro pool next Tuesday............And Dad can go too   ;D YAAAAAAAAAYYYYYY !!!

Elise has had loads of visitors over the last few days..................She has her very own tutor coming everyday and people keep bringing her "stuff" to help her with everyday things..............and best of all is the bath lift...........

Elise had started standing on her own too  :o ;D...............but iv told her not to do any walking unless someone is close by so she dosnt fall.......................WELL DONE ELISE  :-*

She also has a special friend at the hospital who she can talk to about all the things that upset her when she has her medication...........which is good becouse i know she try's very hard to be brave for Dad.........sometines too hard !

WAY TO GO ELISE !!  :-*
Title: Re: Elise's Diary
Post by: Scottietottie on January 10, 2008, 02:18:16 PM
That all sounds very positive! WAY TO GO ELISE!

Now - does Dad have a special friend that he can talk to??????????????????????    ;)

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: Linda196 on January 10, 2008, 03:58:21 PM
Fantastic news! I'd be looking forward to the pool as well, I used to go 3 times a week, but for various reasons I'm not right now, and I miss it.

Standing now, soon we'll be hearing that you're walking, then dancing won't be far off! Please just don't get impatient and try to rush things. You've put up with so much, be patient a bit longer, and wonderful things will happen.
Title: Re: Elise's Diary
Post by: elise on January 11, 2008, 09:10:51 AM
Friday 11th january 2007
Today i have been to hospital.
when we arrived there was no room.
we was waiting in the parents room. i had emla cream then we waited an hour for the emla cream then the doc shoted us.
we then went in the treatment room and i got poked in 3 places.
the first place was the back of my left hand but that would not work. he tried 2 times at the back of my hand.
the second place was my veins at the middle of my arm. they didnt work either.
then finally my right rist worked!!!! i started to get worried because he couldnt find a vein.
it really stung all the time though.
then i had my methetrexete injection.
i was watching harry potter and the philosiphers stone because i was that bored.
love elisexxx
Title: Re: Elise's Diary
Post by: Pooh on January 11, 2008, 10:12:39 AM
Hi Elise,
My goodness, looks like they were using you for a pin cushion. :(  They did the same thing to me last month when I was in hospital.  It really gets tiresome. 

You are such a brave young lady, I've been saying prayers for you that this treatment will have you back to your old self real soon. ;D 

I sure hope you are feeling better, although I know you are surely tired from all of this. ;) 

Hug your Mom and Dad and hang in there.  Just think about all the fun you will have in the summer when you are feeling better. :-* 

Hugs, Pooh
Title: Re: Elise's Diary
Post by: elise on January 11, 2008, 11:32:44 AM
thank you pooh,
i got your card with your photos,
they were beautiful.
it is lovely to hear from you all
thank you again,
love elisexx ;D
Title: Re: Elise's Diary
Post by: itssue on January 11, 2008, 11:34:15 AM
Elise,

I've been poked like that with needles too.  :(    There are so many times my viens don't want to cooperate with the needle.  I hate it when that happens.  There are times I just want to shout Stop!, but I know they have to do it.  You sure are BRAVE, I'm very proud of you. :)

I'm sure it won't be long now and you we be up and around again having lots of fun with all your friends.  Just listen and do as you are told by the doctors and mum and dad.

Give mum and dad a hug, and lots of {{{{{{{{{{HUGS}}}}}}}}}}} to you,

Sue


Title: Re: Elise's Diary
Post by: elise on January 13, 2008, 06:18:06 AM
Thank you Sue. :D
On thursday i will have to go to the hospital again and have another canula.
But hopefully this vein will work this time and it not leave a nasty red bruise like all of my other ones.
I will not be able to eat till 3:oo but i am only allowed little sips of water, not FOOD!!!
But that is because i have to have a muscle biopsy and a portacath.
A portacath is instead of having to keep having canulars all the time.
They know where it is once it is in.
All they will have to do is feel for it, then stick a needle in and do my drip.
But i am only having my 2 operations on thursday.
I have to stop overnight, then have an injection and do my drip on friday.
It is going to hurt i know it is, but ive just got to put up with the pain and not give up.
But sometimes i feel like giving up but i know, i have to carry on.
I have been in pain and had this since i was eighteen months old, and now it has got worse.
How can i keep putting up with it though, because i know it hurts mum and dad inside too?
They have to keep being strong but they cant no more, they just break down then it sets me off crying!! :'(
Has anyone else had to have a portacath?
love elise
xxxxxxxxxxxxxxxx
Title: Re: Elise's Diary
Post by: Pooh on January 13, 2008, 06:29:44 AM
Good morning Elise,
I wish I could through all of this for you, but you are doing a great job. 

I just wanted to tell you that years ago, before things became easier, I had two stainless steel caths that they called "Stop Cocks".  They looked sort of like a plumbing part.  It had a tiny screw cap on the top that the nurses would unscrew and give me Heprin injections through. No needle, they would just screw the injector onto the "stop cock".  They were in the crook of my elbows and I had to be fed because I couldn't bend my arms.  That was a real bummer at the time. 

So with these new portacaths I'm sure you won't have any problem with them.  They don't really hurt and you won't have to be stuck so much.  If it were me, I would take the portacaths over the needles any time.

I hope all of these new procedures you will be going through are over quickly and you get better real soon.

Hugs, Pooh 
Title: Re: Elise's Diary
Post by: elise on January 13, 2008, 06:34:48 AM
How long did you have to keep them in your elbows for?
I bet it was hard for you to write and did it hurt you when you tried to bend your arms?
love elise
xxxxxxxx
Title: Re: Elise's Diary
Post by: Pooh on January 13, 2008, 06:41:01 AM
That was the big problem then, I couldn't bend them at all because it hurt very much if I did.  I had them in for about 2 1/2 weeks. 

But it healed up and I was fine after that.  No more blood clot and I was back home with my family. 

We all have to do things that hurt sometimes in order to get well and that's what you are doing now.  Just remember that not to far in the future, you are going to be better and able to be the fun young lady that I know you are. 

I know for sure that your Mom and Dad will be the happiest people on this earth when you are better. 

You stay brave and good things will be coming your way. 

((((Hugs)))),
Pooh
Title: Re: Elise's Diary
Post by: Scottietottie on January 13, 2008, 07:43:11 AM
Hi Elise  :)

The portocath will be well worth it when they don't have to find veins and stick you with needles any more! It might be a bit uncomfortable just after the operation but after that - it will be more comfortable than the canulas.

The good thing about being your age is that you heal up quicker than older people!

You can't really give up can you? I mean - what would giving up mean? What would you do?

Anyway - I can tell from your posts that you're a fighter and you're not going to let this thing beat you! Hope all the medicines start making a difference you can feel really soon.

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: genko_b on January 13, 2008, 08:45:04 AM
Dear Elise:

You are such a special girl. I wish I could take on the pain for you, so you don't have to feel it. I'm sure any one of us here would do that for you as well. We are always thinking of you, and will especially on Thursday and Friday when you have your procedures.

When I think of how brave you are, it helps me to be strong as well. So you are helping others just by being who you are. Your Mom and Dad are so lucky to have you.

Take care.

Genko
Title: Re: Elise's Diary
Post by: elise on January 13, 2008, 08:54:24 AM
i have been told that if i dont have this treatment i will be in a wheelchair positition so i cant give up. :'(
i have to move on and get better. ::)
I dont know how long it will take but it will be very slow.  :o
It might not be till 6 months till istart running about again. :-[
Hopefully it will be quicker. :)
love elise
xxxxxxxx
Title: Re: Elise's Diary
Post by: genko_b on January 13, 2008, 09:21:21 AM
We are all certainly praying that you will feel better soon, and be running about by summer, if not earlier. Children who have always been able to run and walk do not realize how lucky they are, do they? It reminds me to be very grateful for what I've got.

Thank you, Elise, for being who you are.

Genko
Title: Re: Elise's Diary
Post by: Scottietottie on January 13, 2008, 09:28:33 AM
Hi Elise  :)

When you are your age 6 months seems like ever. It's amazing how quickly it will pass though. Stay strong!

Scottie  :)
Title: Re: Elise's Diary
Post by: elise on January 13, 2008, 10:39:28 AM
i will try my best to stay strong.
I speaked to linda today on msn and we talked for a while.
It was amazing to see her.
we played a game together.
yes, six months is a very long time.
my treatment might be over a year, but ive got to have it.
love elise
xxxxxxxxxx
Title: Re: Elise's Diary
Post by: Shari on January 13, 2008, 04:51:13 PM
HELLO ELISE


Just wanted to pop in and say,  HELLO!I had to have some blood work done today so I drank lots of fluid and when I got there I ran my hands under warm water.  If I don't do this they can't get it out of the back of my hand.   My veins are very uncooperative!   I hope you are having a good day today. 
     We are all human and having our individual trials is part of living.  There are many good times to come!!    Love Shari
Title: Re: Elise's Diary
Post by: elise on January 14, 2008, 01:48:39 AM
Thank you shari,
i had to have some blood taken on friday, but through a canula.
A really kind doctor done it for me.
That was when my veins couldnt work for the canula, so he tried it 3 places.
The wierd thing is, the canula wouldnt go in, but it still bled.
I understand that i have to keep having treatment, but why is it all strong medicines?
am i really that bad?
love from elise
xxxxxxxxxxxxxxxxxxxxxxxxxx
Title: Re: Elise's Diary
Post by: elise on January 14, 2008, 02:33:12 AM
I am going in a hydra pool tommorrow.
I dont know how ill be able to fit my swimming costume on!!
you have ought to seen my belly love elise
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Title: Re: Elise's Diary
Post by: Pooh on January 14, 2008, 06:16:54 AM
Good morning Elise,

I wouldn't worry about that little belly, it will go away when you get better and off the medication treatments.  As long as the pain is going away and you are getting better, don't worry about it. 

I hope you have fun tomorrow in the hydro pool.  It sounds like heaven to me.  Sure wish I could get that kind of therapy for my legs and hips. 

Have a great day today and better one tomorrow.  I have some more pictures to send you.  I hope you like them.

Hugs, Pooh
Title: Re: Elise's Diary
Post by: elise on January 14, 2008, 08:16:35 AM
Thank you pooh.
I have been on my steroids for 7 years now.
They help a really lot, but will they stop working because i have been on them for that long?
Mum and dad say i have to wear a swimming costume, but none fit because i am that fat,
love from elisexxxxx
Title: Re: Elise's Diary
Post by: Scottietottie on January 14, 2008, 08:58:57 AM
Hi Elise  :)

I'm sure you doctors would not keep you on anything if they thought it wouldn't work. The steroids must be doing something!

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: elise on January 16, 2008, 02:22:32 AM
I went to in a hydra pool yesterday. ;D
I really loved it! :D
I swam on my belly and kicked my legs so i could swim on my belly. i also swam on my back. i had a race with dad and won him!!!!
The water is lovely and warm.
Later on i am going shopping with mum and dad.  8)
Tommorrow is when i have to go to the hospital again :(
I have to stop overnight and i dont get internet connection over there so i cant talk to you and my family :(
only dad is with me this time, mum cant come because you are only allowed 1 visitor at a time to a bed.
I have to have a portacath and biopsy tommorrow, then friday i am having methyl pred and an methetrexete injection.
Thid morning we had a nasty phonecall about having pamatrinate early febuary.
It can put my blood pressure levels down, make my muscles weaker and my breathing worser.
I have only just recovered from my breathing.
Me, mum and dad dont know whether to go through with it or not because it will make me poorlier for the first time, then it not happen again but it will make me really really poorly the first time.
If we decide yes i hope it works!!!
love elise
xxxxxxxxxxxxx
Title: Re: Elise's Diary
Post by: Pooh on January 16, 2008, 05:21:28 AM
Well "Splishy", sounds like you had a good time swimming.  Poor Dad, you must let him win next time. ;D

I can see where these next treatments are going to be scarey, but I know how brave you are and you can do it.   :-*

I know these treatments are no fun, but you, Mum and Dad and we know how much better you are going to feel when they are over.  ;)

Take care little one and have a great day,

Hugs, Pooh
Title: Re: Elise's Diary
Post by: Scottietottie on January 16, 2008, 08:02:15 AM
Hi Elise  :)

It sounds like the hydropool is something to look forward to then! I hope getting the portacath and the biopsy go as smoothly as they can and don't hurt too much. (I don't think they will) The portocath will definitely make things easier for the future.
It's good that you are being told all about your treatments and what is being used. Some people are not as honest with their children and that must be even more scary.
You have great parents.
I think it's great that you are giving other people encouragenment on the boards in here and telling them not to give up and stuff. Well done!!

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: Shari on January 17, 2008, 03:51:14 PM
Hello Elise!!    Well,  strong medicines for a strong ailment.  Thank goodness they exist!!

     Guess what I will be doing in Febuary??   Swimming in the ocean!!  Your pool time makes me want to jump on that plane right now and head to the coast!!  But I have to wait.  Patience.....is there ever enough??? ;) ;)
   Thinking of you today sweetie! :-*  Love  Shari
Title: Re: Elise's Diary
Post by: elise on January 18, 2008, 07:48:59 AM
i had a muscle biopsy and a portacath yesterday.
i was put under an anastetic.
i had gas and a canula to put me to sleep.
i had a canula when i was asleep.
i had the needle in when i was asleep and they took it out today.
i got given a bravery award.
i didnt cry.
i have only just got back from the hospital.
love elisexxxxx
Title: Re: Elise's Diary
Post by: Scottietottie on January 18, 2008, 07:57:09 AM
Hi Elise - WELL DONE!!!!!!

I hope it wasn't all too sore and that you are feeling comfortable today.

Brave girl - you deserved the award!  Now - lets hope all the medicines make a real big difference!!

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: itssue on January 18, 2008, 10:56:56 AM
Elise,

You deserve the BIGGEST AWARD  for BRAVERY  that there is.   You know, you are my hero!!!!    I don't know anyone who is as young as you and yet so brave. 

I wish I could have seen you in the pool splashing your dad, that had to be fun.   ;D

Keep up the great work. 

((((((HUGS))))) for Elise,

Sue
Title: Re: Elise's Diary
Post by: ktfabian on January 18, 2008, 05:21:07 PM
Elise-

You certainly deserve the Bravery Award!

You are much braver than I am, and I'm 47.

I go to the pool, also.  I had to find a VERY BIG bathing suit, as I've been on steroids for most of the last 10 years.

When the doctor lets me go off the steroids for awhile, I do lose some of the weight, so once you get feeling better and running around - hopefully by this summer - you won't have to worry about that belly.

You are such an inspiration to all of us and you help me feel brave every day.  I tell myself - If Elise can go through all that she has, I can certainly do what I have to do.

Thank you, Elise.  Keep being brave.  I'll pray that you're out and running by summer, and that you Mom and Dad keep up their good work helping you, tool

Love, Tracy

Title: Re: Elise's Diary
Post by: Linda196 on January 18, 2008, 05:58:01 PM
Good for you , Elise, we're all so proud of you!
Title: Re: Elise's Diary
Post by: Pooh on January 18, 2008, 06:33:26 PM
We are so proud of you Elise. ;D  You are doing so well and being so brave. 

Just keep thinking about all those great things you will be able to do next year this time. 

Take care little one and keep smiling. 

Hugs, Pooh
Title: Re: Elise's Diary
Post by: Shari on January 19, 2008, 03:48:05 PM
Well, well, well !  One more step taken on the road to recovery !  Very good job Elise !!
Title: Re: Elise's Diary
Post by: teachinginca on January 19, 2008, 10:43:03 PM
Hi Craig,

I'm a 28 year old teacher in the US. I was recently DX with SJS, but looking back my first symptoms started around age 20.  I went back through your posts, & I was wondering if Elsie has been dx with other autoimmunes or just Sjogren's?  Sounds rough so far! My prayers are with both of you...with remission possibilites - there is always hope for a better tomorrow.

Hi Elsie,
Good job sweetheart! You keep hanging in there! I love your English accent. It even comes through in your posts.

Love,
Melissa
Title: Re: Elise's Diary
Post by: lynnmarie219 on January 19, 2008, 11:12:56 PM
Elise,


I'm still following your posts and now I see that you got an award for bravery after your biopsy....well you sure deserve it! You are a very brave little girl!

Still thinking about you all of the time.....and hoping that you feel better very soon! I'm so proud of you!


Hugs to you.......(http://www.freesmileys.org/smileys/hug008.gif) (http://www.freesmileys.org)
Title: Re: Elise's Diary
Post by: craigmosley on January 22, 2008, 03:07:58 AM
Teachinginca...........Besides Sjogrens she has developed Polymisitis which is also autoimune.

NOW................where do i start.............?? :-\

The Porta Cath and biopsy went ok.........until friday night when her lung collapsed  :o..............so i rushed her straight back....
Straight away she had a "Drain" fitted ........while she was awake too !!

all well now and we came home on Monday...........PHEEEEEEEEEEEEW !! :o :o
Title: Re: Elise's Diary
Post by: Pooh on January 22, 2008, 05:06:20 AM
Oh my, things just keep on, keeping on for Elise don't they.   :-\  I sure hope things improve real soon and she can rest and be herself for a while. 

Give her a big hug for me Craig and tell her she is the bravest young lady I know.  :)

Hugs and God Bless,
Pooh
Title: Re: Elise's Diary
Post by: Linda196 on January 22, 2008, 05:36:27 AM
Elise, you've more than earned some time off from these problems!

Hopefully the drain will re-inflate the lung quickly and you'll be back on the road to being healthy, and spending your time doing what you want, not what your body insists on.

My goodness, when you're healthy and back to school again, won't you have stories to tell!
Title: Re: Elise's Diary
Post by: lynnmarie219 on January 22, 2008, 05:39:08 PM
((((((((((((((Elise))))))))))))) I think you  need another big but gentle hug! Hang in there.......stay brave!
Title: Re: Elise's Diary
Post by: Pooh on January 22, 2008, 10:29:00 PM
Craig,
How's our brave girl doing?  Is she feeling any better?  I sure hope so.  And how are you and your wife holding up? 

I can't imagine the stress you all are going through.  Hang in there and know that you are all in my prayers. 

Tell Elise Hi for me and I haven't forgotten the letter and pictures. 

Hugs and God Bless,
Pooh
Title: Re: Elise's Diary
Post by: craigmosley on January 22, 2008, 10:48:20 PM
All seems well thanks...................but i find myself watching over her which gets on her nerves a little......... ???

Just glad to be back home..............both of us.

She is feeling a little bruised at the moment but that is to be expected.

What a start for a young child.......... :-\
Title: Re: Elise's Diary
Post by: Scottietottie on January 23, 2008, 07:56:31 AM
Tell you what Craig - she'll grow into a strong minded young woman!  She'll know what matters and what doesn't and a lot of youngsters don't.

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: Pooh on January 23, 2008, 11:18:35 AM
Craig,

Scottie is so right.  Elise will grow up to be a kind, caring and loving young lady.  How could she not, with her Dad and Mum taking such great care of her.  Children learn by example and hers have been exceptional. 

I know exactly how she feels, lol, with you watching over her so closely.  ;D  My family will do the same to me when I'm ill or down with something.   I feel like I'm in a fish bowl. :D  But I know as Elise does, it's only because we are loved so. 

Take care and say hi to Elise.

Hugs and God Bless,
Pooh
Title: Re: Elise's Diary
Post by: elise on January 24, 2008, 11:04:06 AM
thank you everyone,
love elise
xxxxxxxxxxxxxxxxx
Title: Re: Elise's Diary
Post by: itssue on January 24, 2008, 04:20:44 PM
Elise,

We may have never met you, but we feel as if we know you, and of what we know, we know we all love you. And, with all the love and good wishes coming from your sjogren's buddies to you, I'll bet you'll be up and chipper in no time.

Stay strong, sweetie!!!

{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}

Sue
Title: Re: Elise's Diary
Post by: ktfabian on January 24, 2008, 04:22:19 PM
Elise-

I have a question totally unrelated to health (as if there could possibly be such a thing!) I noticed when your Dad posts, there's a picture of whom I believe is John Bonvi. Is that what your Dad looks like, what you Dad Wishes he looks like, or what YOU wish your Dad looked like? 

Just curious! I often live to see who people use as their Avitars. I haven't been brave enough to choose one yet, but I'm sure it would contain at least one cat as a I have 6 living with me now.

Hope you're having a good day, feeling like a kid and finding some fun to be had,
Tracy
Title: Re: Elise's Diary
Post by: craigmosley on January 25, 2008, 07:23:53 AM
ktfabian.......................i wish  ;D

Methyle Pred and Methatrexate today.............through a canular as her portacath is still a bit bruised.  :)
Title: Re: Elise's Diary
Post by: ktfabian on January 25, 2008, 05:11:33 PM
Elise-

Once again, you're much stronger than I am.  I couldn't handle methotrexate - it made me too sick. 

I'm on prednisone (yes, I'm the one with the BIG belly and BIG bathing suit) and am now trying Arava.  I hope to have another infusion of Rituxan soon, as it makes me feel better.

I hope the bruising goes away and I'll wish for a visit from Bon Jovi for you (I wouldn't mind seeing him myself!), but I don't think either of us will have much luck with this wish!

Keep on being strong! Tracy
Title: Re: Elise's Diary
Post by: Rania on January 26, 2008, 03:45:07 AM
A gentle {{{{{ HUG }}}}} for you, Elise. :)

Rania
Title: Re: Elise's Diary
Post by: itssue on January 26, 2008, 11:34:36 AM
Elise,

Just wondering, do you like Jon Bon Jovi or is it your dad or both of you???  I think he is a doll and I like him and his group, and I'm part of the senior age groupie section.  Oh well, I guess you never get to old for good music.   ;)

Sue
Title: Re: Elise's Diary
Post by: craigmosley on February 01, 2008, 12:54:25 PM
What a day........... ???

Got there at 9am...........they couldnt find the portacath  ???
No doctor around to send her for an x-ray to find it...................

Had Canular for her 1 hour MethylePred.....................left at 5pm !! ???

Not a happy bunny !! >:(
Title: Re: Elise's Diary
Post by: Pooh on February 01, 2008, 01:04:09 PM
Craig, did they find the portacath?  How is she doing now?  Don't leave us hanging, I hope she is alright.  I know it must have been a horrible day for her.

Please give her a gentle hug for all of us.  I hope there is light at the end of journey soon.

Hugs and God Bless,
Pooh
Title: Re: Elise's Diary
Post by: craigmosley on February 01, 2008, 01:31:49 PM
No........they havnt found it...................they decided to wait untill next thursday (when she goes for her Goblins) then give her an x-ray..........they think that she is still a little swollen and thats why they cant find it...........

How is she now ???..............asleep.......................she was fed up with everyone poking at her.

The best bit is that when we met a new specialist they wrote her a medication chart and i belive that i am being trained to inject the methatrexate......the MethylePred stops on Feb 15th and that just leaves the "Goblins" once a month !! >:(........................BOY am i mad..................Iv just about reached my limit  >:(

A phsyo came round to see her last week when i had nipped for a coffee and wanted Elise to lift her arms and things.........i was Fuming !!

Elise told her where to go !! :o ;D ;D................"Thats my girl" ..............LMAO
Title: Re: Elise's Diary
Post by: Pooh on February 01, 2008, 03:10:18 PM
WAY TO GO ELISE!!!! Don't you let them get to you girl.  You stick up for yourself.   :D :D ;D

Hang in there little one, there be better days coming I'm sure.   ;)

Take care Craig and stick to your guns.  Don't let those medical heads walk all over you. 

Hugs and God Bless,
Pooh

(((((((((((((((HUGS - Elise)))))))))))))))))))))))))))))


xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Title: Re: Elise's Diary
Post by: craigmosley on February 02, 2008, 01:56:57 AM
BUT !!............having said that......................Elise woke me up this morning  ???

She got out of her bed............"Walked" to my bed room and demanded i got up and take her down stairs !! :o
She is now playing doctors (of all things) with her sister.

All the upset and bad feelings have gone out the window !!
Title: Re: Elise's Diary
Post by: Linda196 on February 02, 2008, 05:49:26 AM
Good girl Elise (maybe not waking Dad, but carrying on!)

We just may have the beginnings of a wonderfully caring doctor in our midst...having faced all that she has, and knowing so much of the frustration, pain and disability that patients face, when she is well, she'd make a great care giver.
Title: Re: Elise's Diary
Post by: lynnmarie219 on February 02, 2008, 10:55:13 AM
Good to hear that today is a little better for you Elise...hang in there! We are all here thinking about you and rooting for you!

Take good care of yourself.......sending another gentle hug to you.... (http://www.freesmileys.org/smileys/hug008.gif) (http://www.freesmileys.org)
Title: Re: Elise's Diary
Post by: Cricket on February 02, 2008, 11:28:05 AM
Elsie

Glad to hear that today is a bit better.  Hang in there, sending a gentle hug your way
(((((((((((((((((((((( HUG )))))))))))))))))))))))))))

Cricket
Title: Re: Elise's Diary
Post by: Scottietottie on February 02, 2008, 12:54:38 PM
For Elise............................

(http://i62.photobucket.com/albums/h81/Scottietottie/Hugs/ShowLetter.jpg)

 :)
Title: Re: Elise's Diary
Post by: Pooh on February 02, 2008, 08:21:59 PM
Here comes some more hugs for you Elise ((((((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))))))))))))).

Take care little one and keep up the great work. 

"Walked" into the bedroom huh!  Well, it's a start.  One step at a time and soon she will be dancing around the floor.  ;D

Hugs and God Bless,
Pooh
Title: Re: Elise's Diary
Post by: moonstarr on February 04, 2008, 12:13:59 PM
hi craig and elise i have been away for quite a few months few a few medical reasons of my own but minor compared to yours elise if you dont mind me asking how long have you been d/x with sjs and all the other utterly horrid stuff that you are dealing with amazingly . also do you mind if i ask your age as i am so honoured to be reading this diary as it is an inspiration and if you could be nominated for an award you should be and you would win hands down elise we are lucky to have you and your dad as members on this wonderful site 
Title: Re: Elise's Diary
Post by: craigmosley on February 04, 2008, 01:04:13 PM
Hi Moonstarr..........Elise is very tired cos of all the Medication she keeps haveing.........

She had "possible" Sjogrens at the age of around 2 years old..............but first started when she was just 18 months.
After a year or so then they dropped the "possible" !!

It was early 2007 when she first started with the Juvanile Dermatomyositis.

Elise is 8 years old  :o..........9 in April
Title: Re: Elise's Diary
Post by: Pooh on February 04, 2008, 01:13:59 PM
Hi Craig,
April was a good month for girls.  I had my two on the 14th and 19th.  Also my granddaughter on the 28th. 

Tell Elise hello for me and I haven't forgotten her letter or pics.  My hubby has been ill and I haven't been able to get them together yet.  Give her a gentle hug for me and I hope she is feeling better soon.

Hugs and blessings,

Pooh
Title: Re: Elise's Diary
Post by: craigmosley on February 04, 2008, 01:22:35 PM
I will.........and thanks.

She is ok in her self but gets tired easily and is still off her food a little...........she's been like that since they put the portacath in...........she worries a lot too.............

Hydro Pool tomorrow.................she's worried about that cos she is still sore and bruised so Dad will have to go in and support her...... ::) ;D
Title: Re: Elise's Diary
Post by: Pooh on February 04, 2008, 01:25:09 PM
Maybe she will let you beat her this week. :D  I hope she has as much fun as she did the first time.  Both of you need the break. ;D

Have fun and be careful.

Pooh
Title: Re: Elise's Diary
Post by: craigmosley on February 09, 2008, 12:23:58 PM
Didnt go to Hydropool............Elise had a tummy bug.

Thursday and Friday she had her "Goblins"................Through her PortaCath  :o :o :o

She was very brave............... ;D ;D ;D
Title: Re: Elise's Diary
Post by: Pooh on February 09, 2008, 03:37:31 PM
Sorry to hear she wasn't feeling good.  Then having to get the "goblins", sheesh!

I'm sure she was very brave, because she is very brave. 

Hugs and God Bless,
Pooh

((((((((((((((((Elise))))))))))))))
Title: Re: Elise's Diary
Post by: lynnmarie219 on February 09, 2008, 05:18:56 PM


Elise you are a (http://smileydatabase.com/s/124.gif)

Here are some guardian angels to watch over you when you need them.....
                                                                                                         
(http://smileydatabase.com/s/130.gif)    (http://smileydatabase.com/s/125.gif)    (http://smileydatabase.com/s/126.gif)    (http://smileydatabase.com/s/145.gif)
Title: Re: Elise's Diary
Post by: irish on February 09, 2008, 09:40:29 PM
Elise, I haven't been on the site as much or as long lately. I missed out on all the excitement that you have had to endure. You are such a brave girl and a "tough little cookie" as they say.

It is good that you are able to have your globulins through your portacath. I have mine through a needle they put in my vein. When people have to have more medication it works better to have the portacath. Saves a person from getting poked so much. At least that is the way it should be.

Glad to hear that you enjoy the pool. Water is so good exercise and for our muscles.

I am really sorry to hear that your lung collapsed and glad that they were able to get it fixed. This has definitely not been a good winter for you. You are lucky to have parents who are so good about taking care of you. Just ignore them when they keep looking at you to see how you are doing. ::) ::) You know that is how "older people" act. It is better to have them checking on you than ignoring you.

Hope things improve and there are no more surprises for you. Irish ;D
Title: Re: Elise's Diary
Post by: Pooh on February 14, 2008, 06:00:33 AM
Happy Valentine's Day!!

Hi Elise,
I hope you are feeling better and that Spring gets here soon.  I think we will all feel better once the sun starts shining and the flowers start to bloom. 

Take care and stay warm. 

Hugs, Pooh
XXXXXXXX()()()()()()()
Title: Re: Elise's Diary
Post by: kim31072 on February 14, 2008, 06:15:49 AM
HAPPY VALENTINE'S DAY.....wishing you lots of hugs,much candy,and that all the TV you choose to watch is something good...no yukky TV programs today!!(http://www.freesmileys.org/sigs/sigs-object-079.gif) (http://www.freesmileys.org)...so theres a teddy for you and then this little guy cause I thought he was wicked cute!!!!(http://www.freesmileys.org/sigs/sigs-tv-003.gif) (http://www.freesmileys.org)


Kim
Title: Re: Elise's Diary
Post by: lynnmarie219 on February 14, 2008, 07:28:25 PM
Happy Valentines Day Elise!!
Title: Re: Elise's Diary
Post by: craigmosley on February 16, 2008, 07:22:49 AM
Elise has had her last MethylPred yesterday...........YAAAAAAAAAAAY !! ;D
Methatrexate still every friday but im being trained up to give that at home.

Only Goblins (once a month) now................maybe we can start relaxing now......

Hydropool this Tuesday  ;D ;D

The Pamidronate has been put on hold for the time being.
Title: Re: Elise's Diary
Post by: Linda196 on February 16, 2008, 08:15:51 AM
All good news, Craig, thanks for letting us know.

Who has more fun in the hydropool, dad or daughter? LOL
Title: Re: Elise's Diary
Post by: Pooh on February 16, 2008, 09:57:45 AM
Oh Craig, it's so wonderful to get good news on Elise.  I hope she has a great time in the hydropool.  I know how much she enjoyed it the last time.  I hope she lets you win this time. ;D

Give her a gentle hug for me and tell her she is doing great.

Hugs and God Bless,
Pooh
Title: Re: Elise's Diary
Post by: lynnmarie219 on February 16, 2008, 10:49:09 AM
Thats great news! Thanks for letting us know Craig! And let Elise know we are all still thinking about her!
Title: Re: Elise's Diary
Post by: irish on February 16, 2008, 11:55:13 AM
Craig, It sounds like things have settled down for you and I hope and pray that Elise starts to show signs of remission soon. Such a hard session this has been for you both. Irish ;D
Title: Re: Elise's Diary
Post by: itssue on February 16, 2008, 02:23:08 PM
That's wonderful news!!!  Have fun in the hyropool!  Elise, and I hope you beat your Dad again, sorry Craig, but I'm cheering for Elise.  :D

Gentle {{{{hugs}}} for Elise!!!

Sue
Title: Re: Elise's Diary
Post by: eyeamdry on February 16, 2008, 08:04:35 PM
Elise, I love the pools of all kinds, too.  Your Dad is probably soooo glad he can join you in the pool.  I hope you feel better soon.  Lucy
Title: Re: Elise's Diary
Post by: ktfabian on February 17, 2008, 10:02:06 PM
Elise-

I just got back in the pool, too, though my Dad doesn't get to come with me  ;D (I'm 47).  I love every minute of it.  After I do my exercises, they let me put on a floating belt and just hang in the 6 foot deep part of the pool.  It feel SOOOOOOO good!  I swear I'm at least an inch taller when I get out of the pool.

I'm glad all the the things you and you Dad have written sound like you're doing better.  you're in my prayers and you continue to be my inspiration for being such a strong young lady!

Tracy
Title: Re: Elise's Diary
Post by: moonstarr on February 18, 2008, 11:52:40 AM
elise hope you have a great time in the pool and im thinking of you and am proud to know such a brave  young lady like you
Title: Re: Elise's Diary
Post by: Pooh on February 19, 2008, 03:59:39 AM
How was the pool?  Did you two have a good time?  ;D

Hi Elise, hope you are feeling better?  Did you beat your Dad again, or did you LET him win this time? :D

Take care Little One and stay brave, one day you will be well.

Hugs, Pooh
Title: Re: Elise's Diary
Post by: craigmosley on February 21, 2008, 05:27:05 AM
We had a great time...............they even let us have some "free time" in the pool  ;D........

Her legs were going like mad when they told her to splash dad ! :o

Shame its only once every two weeks..............its hard to find a "heated" pool...................but i will keep looking..........

We have Sheffield Hospital Tomorrow...............but only for a quick injection (Methatrexate)......then straight back home.....

I was woken the other morning by the sound of rushing water............ ???
I went into the bath room only to find Elise..............standing at the sink washing her teeth...... :o ???.........she then poddled off to her bedroom as if nothing was the matter................Bless her  :)

Title: Re: Elise's Diary
Post by: Scottietottie on February 21, 2008, 06:08:14 AM
That's great Craig! I know you'll want to -but don't wrap her in cotton wool! Her determination will take her far.

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: craigmosley on February 21, 2008, 06:16:35 AM
Quote from: Scottietottie on February 21, 2008, 06:08:14 AM
That's great Craig! I know you'll want to -but don't wrap her in cotton wool! Her determination will take her far.

Take care - Scottie  :)

Thats the hard part !!
Title: Re: Elise's Diary
Post by: Linda196 on February 21, 2008, 06:23:16 AM
That's great, Craig!

Once she starts doing more of the little things without thinking about them, there'll be no stopping her.

A lovely heated pool feels so good, I really miss the days when I was there 3 times a week. Now my best opportunity is when we travel, I always make sure the hotel has a pool and whirlpool, and try to get into it when I can. Of course there's that silly old catch 22...by the time I've travelled to where ever the hotel is, I'm so tired I don't get to the pool! :D. Same catch happened with the therapy pool, when I was working and could afford a pool membership, went just for the feel good; now that I could really benefit from it, can't afford it!
Title: Re: Elise's Diary
Post by: Pooh on February 21, 2008, 08:33:37 AM
Oh Craig,
How wonderful to hear this.  I know how hard it must be to let her go on her own, but don't get her way.  You just might get run over. :D  It sounds like the Elise you want is immerging from her illness. 

This news this morning has made me "cry for happy".  I can't tell you how happy I am for all of you.  Enjoy the little milestones and rejoice in the big ones.

Hugs and God Bless,
Pooh
Title: Re: Elise's Diary
Post by: itssue on February 21, 2008, 12:28:51 PM
Craig,

That is so Great!!!  We need some good news on here and you just made my day.  Soon there will be no stopping her, that is the day we all are praying for, and it will come. 

Take care Craig and give that little darling a Big but, Gentle hug from me!!!  ((((((((hugs))))))))) to Elise

Sue
Title: Re: Elise's Diary
Post by: elise on February 22, 2008, 05:58:00 AM
Today, i had to go to sheffield childrens hospital for an injection. :-\
They wanted some blood. :'(
love elise
xxxxxxxxx
Title: Re: Elise's Diary
Post by: elise on February 22, 2008, 06:09:54 AM
i dont think my dad likes bonjovi but i do!!!!!i also like my chemical romance, girls aloud, kylie minouge, fall out boy, madina lake and blink 182.
my favourite celeb is jerrard leto but i still like jon bon jovi.
love elise
xxxxxxxxxxxx
Title: Re: Elise's Diary
Post by: Scottietottie on February 22, 2008, 08:24:26 AM
Hi Elise  :)

You'll be beginning to feel like a vampire's victim after all these blood tests!!!!!!  I hope the results of the blood taken are good ones!    (http://i62.photobucket.com/albums/h81/Scottietottie/Hugs/LILKIT1222211611-1.gif)

Hope that soon you feel like this - (http://i62.photobucket.com/albums/h81/Scottietottie/rabbit18.gif) and not like - (http://i62.photobucket.com/albums/h81/Scottietottie/zzzzzcorgi.jpg)

and that you can dance to your music like - (http://i62.photobucket.com/albums/h81/Scottietottie/catdance.gif)

Title: Re: Elise's Diary
Post by: ktfabian on February 22, 2008, 05:10:02 PM
Elise-

I don't know how to make the great pictures like Scottie does, but I got a message from your Dad that you got a big smile from the postman today!  I hope that smile lasts a long, long time!

Tracy
Title: Re: Elise's Diary
Post by: Shari on February 24, 2008, 04:44:08 PM
Well Hello Elise and Craig!!   I have read through the notes to see how things have been going and pleased to see that all is going well!!

Don't you just love all of Scotties little characters!!!?

My birthday is in April also..the 10th...my daughters is the 17 and my grand daughter who is 11 is on the 27th.  There are lots of babies born in the spring.....litle baby chicks..and us!!
Take good care..Shari
Title: Re: Elise's Diary
Post by: craigmosley on February 29, 2008, 01:14:55 AM
Well..................today is the day that i get trained up for the Methatrexate injection ! :o

Elise seems to be very tired lately................i think she must be ready for her "Goblins" again..............she seems to pick right up after she has had them. ;D

Other than that..........................she's fine................just appears from nowhere................just like the cartoon "Mr Ben".............. ;D :D
Title: Re: Elise's Diary
Post by: Treece on February 29, 2008, 03:57:48 AM
Elise

BON JOVI Rocks! I hope all goes well!

I grew up in the old days when Bon Jovi was all over all you heard was Bon Jovi on the radio. The day of Big hair back then and their first album <---- Or CD as they call it today I had the album though back then.
God Bless and I will keep you in my prayers little one and family.
Treece
Title: Re: Elise's Diary
Post by: Linda196 on February 29, 2008, 04:02:46 AM
Wonderful news, Craig. Sounds like you're getting your little girl back. I'm sure you'll master the MTX injections easily.

Elise, no giving Dad a hard time about the shots...some people ( ::) who shall remain nameless) used to have work friends giving her medications or taking blood, and she'd jump or moan or otherwise tease them, when they were actually not even causing a pinch! Trouble is, if ever there really was a small problem, they wouldn't have believed it!

Get those "goblins" into you, and have a great day!
Title: Re: Elise's Diary
Post by: Pooh on February 29, 2008, 06:24:34 AM
Gret news Craig, just what I needed this morning.  Elise you hang in there little one, you are going to beat this real soon. 

Spring is coming and the sun will out and the birds will be singing and the flowers will be blooming.  The earth will renew itself and we will all feel good again.  It's been a dreary, wet winter.  I so look forward to the warmer weather.

Happy Jon Bon Jovi Elise!  Get Dad a pair of earplugs and turn up those tunes. ;D

Hugs, Pooh
Title: Re: Elise's Diary
Post by: elise on March 07, 2008, 12:52:15 AM
Yesterday and the day before i had to have my immunoglobolins through my portacath.
It is very boring because i have to have them for 5 hours one day then another 5 hours the next day.
I got that bored that i watched a dvd called Stardust.
I dont have to go to the hospital for another month now.
today  i am shattered and i have migrains a lot.
Title: Re: Elise's Diary
Post by: Scottietottie on March 07, 2008, 05:59:31 AM
Aw - you poor thing! (http://i62.photobucket.com/albums/h81/Scottietottie/Hugs/tedswithwings-1.gif)

5 hours is a long time. I'm not surprised yopu got bored! Hope Stardust was good. At least you get a whole moth off now.

Sorry to hear you are exhausted and having migraimes. I hope they go away soon.

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: Shari on March 07, 2008, 11:37:57 AM
Hi Elise~~Wow, that is a long time!!  Just go with the flow as best you can.  Positive energy helps your body to heal.

I know it stinks!!!  There are plenty of things you would rather be doing!!

you say you are shattered and your head hurts~~maybe an extra cuddle with your mum or dad~~

Take sweet care :)  ~~Shari~~
Title: Re: Elise's Diary
Post by: lynnmarie219 on March 07, 2008, 07:54:16 PM
((((((((((((((((Elise))))))))))) Sending you all the hugs you need and a few extras! Take good care of yourself and make sure you rest after those two long 5 hour days!   (http://www.freesmileys.org/smileys/hug008.gif) (http://www.freesmileys.org)  (http://www.freesmileys.org/smileys/hug002.gif) (http://www.freesmileys.org)
Title: Re: Elise's Diary
Post by: Shari on March 11, 2008, 12:15:14 PM
Just to let you know that I am thinking of you today :)
Title: Re: Elise's Diary
Post by: Pooh on March 17, 2008, 07:44:52 PM
Hi Elise,
Just hopping in here to wish you a very HAPPY EASTER!  I hope the Easter Bunny drops some good stuff on you. ;D

Hugs and God Bless,
Pooh

Hippity, Hoppity, Easter's on it's way.............
Title: Re: Elise's Diary
Post by: craigmosley on March 18, 2008, 04:32:38 AM
BAD NEWS.................... :o

Elise's lap top has had to be mended !!

She is not verry well today...........but its just a cold i think.

Elise has asked me to post some letters for her.............not sure what is in them but keep an eye out for them... :o :D

We are being measured up tomorrow for a stair lift for her................Stairs are the only thing that she wont tackle yet........

Dad is giving the Methatrexate injection once a week so we only have to go to Hospital once a month for the "Goblins".

Looking forward to watching Elise running after the Easter bunny.................who wouldnt run after anything for chocolate !!!! ;D
Title: Re: Elise's Diary
Post by: Pooh on March 18, 2008, 06:52:55 AM
Hi Craig,
Sorry to hear she is having technical problems, but so much better than the personal type. ;D

Tell her I said Hi and wish her a very Happy Easter. 

I hope the family is doing well and Easter is beautiful for all of you. ;)  I am so looking forward to warmer, clearer weather.  :D

Hugs and God Bless,
Pooh
Title: Re: Elise's Diary
Post by: itssue on March 18, 2008, 01:39:05 PM
Craig,

Please give Elise a HUG from me and let her know that I hope she enjoys the "Chocolate Bunnies", and does not have to fight you for them.  :D

Take Care Elise, we all love you.

Sue
Title: Re: Elise's Diary
Post by: craigmosley on April 02, 2008, 06:51:08 PM
Just as thing's were going so well......... >:(

The Methatrexate is upseting Elise's liver !!............or so the blood tests are saying.

Why cant things go smoothly for her?...............just for once  :'(

She was doing so well too................i thought we was getting somewhere with all the problems she's having.

At least they noticed before anything serious happened..............but what next ?

On the bright side................her lung tests are getting better and she is only on 5mg of Prednisolone................and she is  still roaming about the house..................Iv just noticed that the sweety jar is getting low !!............i wonder who ?? ??? ::)





 
Title: Re: Elise's Diary
Post by: genko_b on April 02, 2008, 06:53:52 PM
Oh Craig, so sorry to hear this. I think of Elise a lot and keep hoping she's doing OK. Perhaps they can find something else that is not so hard on her liver. We will keep our fingers crossed for that.

Please give her a big hug. I'm sure everyone else will be along shortly to give more hugs.

Genko
Title: Re: Elise's Diary
Post by: lynnmarie219 on April 02, 2008, 07:02:40 PM
Hi Craig......Yes I'm another one who checks in on this post to see how Elise is doing and think about her often! I'm sorry that the med is now affecting her badly and hope they can find some alternative medication or treatment to help without upsetting her liver.

Giver her a hug for me too.......((((((((Elise))))))
Title: Re: Elise's Diary
Post by: Pooh on April 02, 2008, 08:30:57 PM
Hi Craig,
So sorry to hear she is going through another spot of turmoil.  By the way, isn't her birthday this month?  Thought I would send her a card but don't know what day? 

Maybe a couple from here would cheer her up. 

Give her hug for me too and tell her to save some of those sweets for us.  lol

Pooh
Title: Re: Elise's Diary
Post by: craigmosley on April 03, 2008, 01:26:23 AM
I quizzed her today about the sweets.............."Its the Ants" !! ::)

She will be 9 on the 19th.........Grandad has a Caravan At the seaside so i think a seaside trip would be nice.
Title: Re: Elise's Diary
Post by: kim31072 on April 03, 2008, 04:39:38 AM
Craig I too would like to send her a birthday surprise could you please send me your addy in a PM....thanks.I hope the seaside trip goes well......and so sorry about "the ants" ;D...we sometimes have them here too(8 yr old and 15 yr old) ;)


Kim
Title: Re: Elise's Diary
Post by: Pooh on April 03, 2008, 08:18:25 AM
Craig,
Thanks for tipping us off to Elise's BD.  I won't forget it, it's my oldest girl's BD also.  My youngest is the 14th.  We have lots of family BD's this month.  Good month for good people. ;D

Sure hope Elise is feeling better again real soon. 

Hugs, Pooh
Title: Re: Elise's Diary
Post by: Shari on April 04, 2008, 06:16:13 AM
Good Morning Elise!!

I hope today that you are feeling well and hope that the Docs are able to get things back on track for you.

Oh!!  A birthday coming up!  Mine is on the 10th this month.  My daughters, granddaughters, and two brothers are also this month!  A busy time!

I hope that you have a wonderful day!

Love  Shari

Title: Re: Elise's Diary
Post by: mim on April 05, 2008, 07:40:46 AM
Looks like our lovely little lady is going to be geting a few extra birthday cards this year!!!!!

Love ya honey bee

Mim xxx
Title: Re: Elise's Diary
Post by: craigmosley on April 06, 2008, 01:54:19 PM
ALL IS WELL............. ;D :D

The reduction in the steroid is the cause of it all..........(PHEW)
If she has any more problems its a case of raising the steroid a little............ :)
Title: Re: Elise's Diary
Post by: irish on April 06, 2008, 02:16:03 PM
Craig, That is really good news regarding Elise. She is such a tough little gal with all she is going through. I sure hope that she gets put into remission with the Methotrexate and the IVIG. It would be such a blessing to even be 50% better.

I think it is great that she enjoyed the Easter candy. You tell her I still blame "the ants" -- "the grandkids" when candy is missing. Whatever works!!!! Irish ;D
Title: Re: Elise's Diary
Post by: Pooh on April 06, 2008, 05:21:31 PM
WooHoo!!! terrific news Craig.  I can feel your relief all the way on this side of the great pond. 

I hope she improves rapidly and can enjoy her summer this year. 

Take care and give her a gentle hug for me.

Pooh
Title: Re: Elise's Diary
Post by: mim on April 09, 2008, 11:01:56 AM
I am so pleased this latest worry has abated.  Hugs for you Elise and also hugs for dad for being such a great dad!!!!!!!

Mim xx
Title: Re: Elise's Diary
Post by: lynnmarie219 on April 09, 2008, 08:34:43 PM
Thats great news!

Thanks for keeping us updated Craig!!


((((((((((((((((((((((Elise))))))))))))))))))))))))
Title: Re: Elise's Diary
Post by: elise on April 10, 2008, 04:44:13 AM
Hi everyone
guess what?

tommorrow i am going to school  for the afternoon. ;D
18th,19th and the 20th im going on holiday. :o
sorry i havent rote it is because i forgot about it. :-[
soooo sorry  :-\
Title: Re: Elise's Diary
Post by: kim31072 on April 10, 2008, 04:46:50 AM
Have a great time at school....and have lots of fun on Holiday....


(((((HUGS)))))


Kim
Title: Re: Elise's Diary
Post by: elise on April 10, 2008, 04:48:05 AM
guess wot?
im going 2 school and holiday Woppee!
Title: Re: Elise's Diary
Post by: elise on April 10, 2008, 04:50:45 AM
thanks kim.
have a great time.
thinking  of yu
Title: Re: Elise's Diary
Post by: Pooh on April 10, 2008, 05:32:59 AM
WooHoo!!! You have a great time Elise.  You have a fun, safe holiday.  And school will be wonderful too. 

Take care and stay well.  Summer will be here soon and the fresh air will be so wonderful after such a terrible winter.

Have fun,

Hugs, Pooh
Title: Re: Elise's Diary
Post by: ktfabian on April 10, 2008, 02:49:51 PM
 ;D WOW ELISE ;D

Have a GREAT TIME at school and on holiday!!!

I am SO, SO, SO, SO, SOOOOOO Happy for you!

Keep up the great work, kiddo.  We all love you and we all love when things are going really great for you!

Hugs, Tracy (ktfabian)
Title: Re: Elise's Diary
Post by: Scottietottie on April 10, 2008, 03:04:37 PM
Hi Elise  :)

That is such good news. Thank you for sharing it. Hope that school and holiday are good! (Gotta be better than being stuck in the house!)

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: lynnmarie219 on April 10, 2008, 08:30:25 PM
Hi Elise....


It was so nice to hear from you.....have a wonderful afternoon in school and a very fun holiday after that!! You deserve to have FUN FUN FUN!!!!!   :D
Title: Re: Elise's Diary
Post by: Shari on April 10, 2008, 08:36:20 PM
Hi Elise~~Wow, you have busy times planned!!  Have great fun!! Be sure your Dad relaxes for the Holiday too!!   ~~Shari~~
Title: Re: Elise's Diary
Post by: mim on April 11, 2008, 01:12:31 PM
Hi Elise

have a fab time honey bunch and enjoy both adventures.....

Mim
Title: Re: Elise's Diary
Post by: craigmosley on April 26, 2008, 10:18:23 AM
What a weekend !! :-\...........it was blowing a gale and very cold........
Elise loved it !! :o

A big thank you to all that sent birthday cards............i kept them until it was her birthday and you should have seen the big smile on her face...........Thank you all  :)

Elise is now able to get in and out of the house on her own..... ;D....And wanted me to put up the trampoline  :o
She wont go on it but i think she uses it as a goal or something to aim for come the sunshine.
Title: Re: Elise's Diary
Post by: Scottietottie on April 26, 2008, 10:24:00 AM
Hi  :)

It's great to hear that the improvement continues. I bet she'll have a go at the trampoline before the end of the summer!!

take care - Scottie  :)
Title: Re: Elise's Diary
Post by: mim on April 27, 2008, 12:24:28 PM
Elise,

My son Harry has a trampoline last year during the summer when he was not using it I took scatter cushions out and laid on it reading my book, it was really comfortable and gave me a chance to enjoy the weather.

Mim

PS - Absolutely love the angel xxxx
Title: Re: Elise's Diary
Post by: elise on April 28, 2008, 12:19:43 PM
Well i got ur letter ;D
i dont mind that u drew pictures because my dad does the elephants bum  :D
thank you very much for keepin in touch
thinking of you always
Elise
xxxxxxx


P.S got home from Immunoglobolins, there again tomorrow but guess what?
LAST TIME!!!! -shoked face-
lol
:D
Title: Re: Elise's Diary
Post by: Pooh on April 28, 2008, 01:26:56 PM
WOOHOO!!!!!!!!!!!!!!!!  Thanks so wonderful to hear!!  No more goblins.  Take care little one and have fun at school. 

Hugs, Pooh
Title: Re: Elise's Diary
Post by: craigmosley on April 28, 2008, 03:29:15 PM
It sure is..................got the letter today............

All the meds has knocked her Sjogrens into remition.................

Im soooooooo pleased...................just have to keep an eye on her now........... ;D
Title: Re: Elise's Diary
Post by: Linda196 on April 28, 2008, 03:36:21 PM
Three cheers for our wonderful little miss!!

Such good news, but now the fun starts Dad. I have a feeling there will be no stopping a healthy Elise. You are going to have your hands full, but in a much better way than the last year or so.
Title: Re: Elise's Diary
Post by: craigmosley on April 28, 2008, 03:39:12 PM
NOW IM WORRIED !!................she has a lot of catching up to do ........and i remember the things i used to get up too  :-X

Cant wait..............LMAO
Title: Re: Elise's Diary
Post by: Shari on April 28, 2008, 05:00:04 PM
Elise~~~I have a tramp out in the back lawn~~~When you get on yours let me know and I will get on mine. ( I have to finish setting it up as It has to be put away in winter other than the frame)

I will probably tumble on my head and be even more forgetful than I am now!! :P

Have fun and thank you for the good news!!

~~Shari~~
Title: Re: Elise's Diary
Post by: ktfabian on April 29, 2008, 05:54:58 PM
Elise and Dad-

REMISSION- WONDERFUL!!!!!!!!!!!!!!!!! ;D

I'm so very happy for you.  That little Angel on your bedside must be taking very good care of you (and all the prayers from your friends here probably didn't hurt, either!)

You go out and have a wonderful time being a very wonderful 9 year old.

And watch the mail.  I got your letter today and will be drawing a picture for you, as well, though I doubt I'm as good an artist as you are!

I hope your birthday was fabulous, I'm afraid I'm one of those people who never gets cards out on time.  But I was thinking of you and am so glad you had such a great time.

Enjoy everything, Elise, You deserve to,

XXOO Tracy
Title: Re: Elise's Diary
Post by: lynnmarie219 on April 29, 2008, 07:00:11 PM
Yahooooooooooo.......thats the best news I've heard in days! Thanks for sharing it with all of us here Elise and Craig!

Let us know when you get up on that trampoline......how much fun will that be?  :D 
Title: Re: Elise's Diary
Post by: mim on May 01, 2008, 02:02:04 PM
I am so pleased for you.....now you can get on with life and enjoy being a young lady.

and tell dad we can be the elephants bum club he he

Luv ya

Mim
Title: Re: Elise's Diary
Post by: Pooh on May 02, 2008, 10:47:11 AM
Craig and Elise,
Don't forget to keep us updated on the fun.  We are still part of your family and we love Elise so much.  She is such a brave young lady. 

We don't want to miss out on her progress and her bright future.  Have fun Elise but be careful you don't go to fast. ;D

Hugs and God Bless,
Pooh
Title: Re: Elise's Diary
Post by: craigmosley on May 02, 2008, 11:37:01 AM
The worst is over and we know she is on the mend............but she isnt cured.............we till have more medication opptions..............portacath removal..........so dont worry..............we will be around for a long.....long time....

If thats ok with you all ? ;D
Title: Re: Elise's Diary
Post by: Pooh on May 03, 2008, 08:24:30 AM
You betcha it's alright with us. ;D  We would all miss our precious little Elise and her Dad. 

Take care and yes, please don't leave us. ;D

Hugs, Pooh
Title: Re: Elise's Diary
Post by: lynnmarie219 on May 03, 2008, 09:02:52 AM
Yessssssssssssssssss.....its ok! We wouldn't have it any other way!

And like Pooh said....keep us updated on the fun!! 
Title: Re: Elise's Diary
Post by: irish on May 03, 2008, 08:57:01 PM
craig, I am so glad to hear that Elise is in remission. What great news. Kids are really tough when it comes to illness. They do better than adults most of the time. Hopefully, she will not go full speed ahead but go slowly as she is going to get tired fast. Just think of all the sitting she has done the past year. Now her little legs will just be spinning on the ground.

It is so good to hear about this and frankly, I would rather it be her than me with remission. She is young and has her whole life ahead of her. Thankfully as you said there are many other meds out there. Hopefully, the combination she has been using will work for her for a long time. Good luck and keep us all updated. Irish ;D
Title: Re: Elise's Diary
Post by: elise on May 23, 2008, 01:14:34 PM
Hello Elise here,
when dad carries me upstairs, i walk up 2 steps  :o

Hope you are all doing well
thanks for supporting me.
last of immunoglobolins  :o
take care  ;D
love elise xx  :D
Title: Re: Elise's Diary
Post by: YICKelly on May 23, 2008, 02:48:48 PM
Hi Elise.  I'm fairly new here, so you don't know me yet.  I am so glad to hear of your improvement!!  Walking up 2 steps is sooooo much better than walking up none!  Keep working, but don't over do, and soon you will be walking up 4 steps.  Thanks so much for keeping us up to date on your recovery.  (((Hugs))) to you and your family.
Title: Re: Elise's Diary
Post by: Shari on May 23, 2008, 08:35:50 PM
Just popping in to say, "Hi" Elise!

~~Shari~~ :D
Title: Re: Elise's Diary
Post by: lynnmarie219 on May 24, 2008, 12:51:54 PM
YEAHHHHHHH ELISE!!!!!!!!   (http://smileydatabase.com/s/888.gif)


Thanks for the update! We all LOVE to hear such great news!!!
Title: Re: Elise's Diary
Post by: itssue on May 24, 2008, 12:53:50 PM
Hi Elise,

You are doing GREAT!!!   I am so proud of you.   ;)  Keep up the good work, be patient and before you know it you will be climbing all your steps.

Keep in touch with us,

Lots of hugs for ((((((((((((((((Elise)))))))))))))))!!!!  Tell Dad Hi too!!!

Sue
Title: Re: Elise's Diary
Post by: Pooh on May 26, 2008, 10:16:03 PM
Hi Elise,
I've missed hearing from you.  I've been off for a while, but I'll be back soon.  I am so glad to hear you are doing those stairs.  Don't rush it, take it one step at a time.  ;D

Get Dad to give you a big hug for me.  I think of you often and I hope you have a terrific summer.  :D

Hugs and Love,
Pooh
Title: Re: Elise's Diary
Post by: ktfabian on May 27, 2008, 07:40:57 PM
Hey Elise-

I'm SO glad to hear things are going well for you. 

I also wanted to tell you again, thank you for my little Angel.  She's working overtime right now as my son gets ready to leave for Iraq.  But every time I start to worry, I visit my Angel, and I think of how well you are doing now, and I know that everything will be alright.

You keep getting stronger, Elise. You're an inspiration for all of us!

Tracy (ktfabian)
Title: Re: Elise's Diary
Post by: Pooh on June 07, 2008, 04:49:14 AM
Hi there Little One, how are you doing with those stairs?  We miss hearing from you. 

I hope your summer is filled with all the wonderful things you missed last summer when you were so very ill.

Take care and have a great summer.

Hugs, Pooh
Title: Re: Elise's Diary
Post by: craigmosley on June 07, 2008, 05:34:18 PM
Hi all.............
all seems to be going well..........the Methatrexate seems to be working for the JDM and Sjogrens............we have a scan on Tuesday and if all is well the Porta cath can come out............YYYYAAAAAAAAYYYYYY......

still on 2 steps but her movement is getting much better

I will keep you all informed................Take care xxxx


Title: Re: Elise's Diary
Post by: genko_b on June 07, 2008, 06:09:30 PM
SO GLAD to hear Elise is doing so much better. It has really made a difference to so many of us.

Onward and upward - next is three steps!

Genko
Title: Re: Elise's Diary
Post by: Pooh on June 08, 2008, 09:49:53 AM
Thanks Craig for the update on our gal.  I'm so glad to hear she may get that portacath out.  That will be a huge step forward. 

Give her a hug for her all "adoptive" aunts and uncles here at Sjogren's World.  I hope the progress is all forward, with no looking back.  She is such an inspiration to all of us.   ;D

Good luck,

Hugs and God Bless,
Pooh
Title: Re: Elise's Diary
Post by: Berly64 on June 26, 2008, 04:43:39 AM
Elise and Craig,

I was directed to your posts because I have a 9 year old daughter and it is suspected that she has Sjogrens.  She went in for a simple eye exam and came out with this possibility.  She has had urinary, skin and gastro issues since infancy so in some ways I am glad to have a direction to look into.  She doesn't have severe issues just a lot of irritations and we are treating them all with over the counter items.  We are in the process of finding a physician to treat her.

She wanted to know if there where any other girls out there with this same issue so I am glad I stumbled onto this site.   

Thanks
Kim



Title: Re: Elise's Diary
Post by: craigmosley on June 26, 2008, 05:07:21 AM
Hi Kim.................Elise has had it all...........and more besides i think.
Please feel free to ask any questions that may be bothering you....................i had loads when she first became ill with Sjogrens................

Finally got her back into school YAAAAAYYYY !........lol............afternoons at any rate.......im bored stiff now though.my play mate is missing  :'(..................

Stair lift has been fitted............and "boy" is it getting some use............"I wil fetch it dad"..........lol ::)
Title: Re: Elise's Diary
Post by: craigmosley on June 26, 2008, 05:45:21 AM
Update..............

Stair lift has been fitted...................she loves it  :D

Had the dining room knocked into living room so Elise has more room , ahd easier for her to get around.

Her laptop has packed in and is at the menders..........

She's only on 4mg Pred now and doing well...............

She goes every afternoon to school now............iv never been so bored in all my life  :( but she seems to enjoy it)

Her wheel chair stays in the car now.....................she only uses it for long distances..................i had one of those old fashioned horns fitted..........the ones with a big rubber ball on the end that you squeeze to make it "Honk".........it was great going round the supermarkets............"Make way..........."HONK HONK"........COMING THROUGH !"...........LOL

Elise says "Hi" to you all and is looking forward to getting her laptop back..................
Title: Re: Elise's Diary
Post by: Pooh on June 26, 2008, 07:33:18 AM
HI Elise and Craig,
Oh my I bet you do miss her.  But isn't it wonderful she has come so far.  I looked back at last summer's posts and WOW! what a difference.  I pray all goes well and she continues to improve.  Now that she is out and on the go again, we shall miss her too. 

Take care Elise and have a fun, fun summer. 

Hugs and God Bless,
Pooh
Title: Re: Elise's Diary
Post by: ktfabian on June 27, 2008, 05:34:48 PM
Craig,

Thanks so much for the update.  The news is wonderful!

I'm sorry you're bored, but I bet it's the best reason you've ever had for boredom.

Take care and please give Elise a big hug from me as well. 

I've been keeping all of you in my prayers for continues good days and quiet nights,
Tracy
Title: Re: Elise's Diary
Post by: lynnmarie219 on June 27, 2008, 06:09:04 PM
Hi Craig and Elise!


Thanks so much for the update and I'm glad that Elise is doing so much better!

Hugs to you both! 
Title: Re: Elise's Diary
Post by: elise on June 29, 2008, 12:28:02 PM
I have been 2 skeg for the weekend :)
did you all enjoy the weekend ? xx
i am really sore from the sun  :D :D:D:D
:P  :-* :-*
love from elise xxxxx
P.S i cant wait for meeting ben my brother lol never met him :P
xx
Title: Re: Elise's Diary
Post by: Scottietottie on June 29, 2008, 12:38:07 PM
Well hello Elise! Long time no see! I'm glad you had a nice weekend. Do be careful of the sun. Unfortunately it can make people with Sjogren's feel quite bad. You make sure you get your Dad to rub sunblock on you nad buy you a nice floppy hat!

So when do you get to meet your brother then???? That's exciting news!

have a lovely summer - take care - Scottie  :)
Title: Re: Elise's Diary
Post by: craigmosley on July 07, 2008, 12:07:09 PM
Hi all..............

Had trouble with Elise's portacath..............couldnt take bloods from it so they have decided it may as well come out......Elise is pleased  ;D

She has had another weekend at the seaside.............she loves the hot dogs, candy floss, fish and chips, ice cream, dough nuts............lol :D
going again next weekend............a bit too cold for the beach but she had a paddle
Title: Re: Elise's Diary
Post by: Shari on July 07, 2008, 06:14:57 PM
How  far away is the seashore??

I grew up on the seashore and just loved it.  I visit often now.

Take care ~~Shari~
Title: Re: Elise's Diary
Post by: lynnmarie219 on July 07, 2008, 07:14:28 PM
It sounds like a wonderful time at the seaside to me! Lots of fun and good food!! (http://www.freesmileys.org/smileys/eatdrink025.gif) (http://www.freesmileys.org) (http://www.freesmileys.org/smileys/eatdrink033.gif) (http://www.freesmileys.org)
Title: Re: Elise's Diary
Post by: Pooh on July 07, 2008, 09:45:04 PM
Oh Craig, I'm so happy to hear she had that cath removed.  I just know she is happy about that.  So glad to hear she is having a good time at the shore.  Like Shari, I grew up on the ocean shore.  That ocean water is always cold, at least to me it is. 

Tell our little one, to have a great summer and stay well.  Don't overdo it on those sweets though, but do have fun. 

Hugs, Pooh
Title: Re: Elise's Diary
Post by: craigmosley on July 11, 2008, 05:33:39 PM
Here's one for you !!

iv had psoriasis for a number of years now and had creams for it.
I went to the doctors yesterday and explained the problem im having with a stiffness in my elbow.........(iv had this for 4 or 5 months and it strarted getting worse)
" You have arthritus" he said...."its connected with the psoriasis......very aggressive and spreads fast........its an auto imunne problem"...........my jaw dropped........

Does this mean that i am the reason Elise has it ?..........im shocked at the thought as you can immagine.

I got in the car........close to tears all the way home at the thought of me being the reason Elise has this problem.......

When i told Elise.....................She burst out laughing  :D :D..................."Im just like you dad" she said............i couldnt help but laugh................

I feel terrible though

Looks like i will be joining Elise with the Methatrexate injections................"i will do your injections and you can do mine dad!" she said.................bless her....................
Title: Re: Elise's Diary
Post by: genko_b on July 11, 2008, 07:38:12 PM
Wow Craig!

Well welcome to the club - the club of families with AI. There are many of us out there.

And good for you Elise, for setting your Dad straight on things. There is absolutely no blame to be had here. Just remember you are both so fortunate to have each other for company, believe me.

Take care and let us know how you are doing. The only question I have is, shall we rename this string "Elise and her Dad's Diary," or should you have a separate string now that you have your own diagnosis? These are the big questions. . .

Wishing you both well and a happy summer together.

Genko


Title: Re: Elise's Diary
Post by: Pooh on July 11, 2008, 08:19:18 PM
Craig,
My mother had RA and I'm pretty sure Sjs, but it was never dx'd.  I don't blame her for my problems today.  Elise doesn't blame you, so don't blame yourself. 

This was not something you could control.  Follow Elise's attitude and deal with it like she does.  If it were possible (but I don't think it is possible) it will probably bring you two closer. 

Tell him Elise, he's a great Dad and he has nothing to feel guilty about. 

Take care you two, and remember we are here for you.  I hope you feel better Craig, you have a great little gal there. 

Hugs and God Bless,
Pooh
Title: Re: Elise's Diary
Post by: eyeamdry on July 11, 2008, 08:29:15 PM
Craig, I've been diagnosed w/Sjogrens for almost two years now.  Didn't realize I had psoraisis until just recently.  It was limited to one small rough patch on one elbow.  All of a sudden the bottom of one foot is all itchy and broken out.  Guess what?  Yep. Says the dermatologist.

I really enjoy reading Elise's diary.  You have some girl there, and she has some Dad.  Now you can share meds.  :o

Lucy
Title: Re: Elise's Diary
Post by: Berly64 on July 15, 2008, 04:35:55 AM
Craig

It is very interesting to me that your elbow started getting stiff.  I have had the same thing for months with no explanation.  I have been putting it off, because I am working threw trying to get a confirmation that my 9 year old daughter has Sjogrens. 

I also share the feeling of wondering if I am the genetic reason my daughter is having issues.  It seems as her issues have mounted over the years I trace them all back to me.

It is wonderful to read how you both support each other and have such a close relationship. 

Kim
Title: Re: Elise's Diary
Post by: craigmosley on July 15, 2008, 04:54:23 AM
I think it will be a long time before i get a possative confirmation................but i agree..........it gets you thinking. ???

Had my bloods yesterday...................X-rays today...........10 days before i know anything.

Elise is having a "Beach party" at school today...........this will be her first full day !

Iv been told of a new study starting up for Sjogrens sufforers...................Elise had some bloods sent to London for a sort of Data base for the condition................its not just for UK Sjogreners..........it is going to be a world wide study..........
Title: Re: Elise's Diary
Post by: Pooh on July 15, 2008, 08:18:03 AM
Hi Craig,
Glad to hear Elise is back full time and it sounds like she is enjoying herself. 

That's promising news about the Worldwide study in this disease.  If you hear anymore let us know. 

Pooh
Title: Re: Elise's Diary
Post by: craigmosley on July 29, 2008, 02:49:42 AM
Port is coming out on 28th August.................the week after we come back from our holidays  ;D

Elise is a little worried but i will be there with her.............things seem to be going well for a change......apart from a bit of a cold which is dragging on a bit.......
Title: Re: Elise's Diary
Post by: Pooh on July 29, 2008, 07:01:01 AM
WoooHoo!  So glad to hear this good news.  Tell Elise I am so happy for her.  It's been a long up hill fight but she has been such a brave girl.  I hope the rest of this year goes just great.

Hugs and God Bless,
Pooh
Title: Re: Elise's Diary
Post by: Scottietottie on July 29, 2008, 07:07:41 AM
Good news indeed. I hope you're both enjoying the summer.

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: lynnmarie219 on July 30, 2008, 04:36:55 PM
Thats great news!!

August 28??? Lets start the countdown........(http://www.freesmileys.org/smileys/signs082.gif) (http://www.freesmileys.org)
Title: Re: Elise's Diary
Post by: craigmosley on July 30, 2008, 06:18:49 PM
HOLD ON...........................
just had a phone call......................it been moved forward to Tuesday 26th August...........lol

More good news..................Elise has been on the Trampoline today.............Twice !!!..............Bouncing away like Tigger she was........ ;D

What ever happened to the other Lady who had a child with Sjogrins ?.........i was hoping to keep in contact with her...........and to take some of the worry away..........bit like a "before" and "after" kind of thing................its been hard at times.............dont know what i would have done without you guys and all your help.......... :-*
Title: Re: Elise's Diary
Post by: Pooh on July 31, 2008, 05:37:31 AM
Oh Craig, you made me "cry for happy" this morning.  Elise on a trampoline, what a wonderful way to start my day.  ;D

Who says prayers don't work?  I am so happy for our little courageous Elise.  She is surely "bouncing back" in a big way. :D

Please give her a big hug for me and I will write to her real soon. 

WAY TO GO ELISE!!!

Hugs and God Bless,
Pooh
Title: Re: Elise's Diary
Post by: craigmosley on August 22, 2008, 03:32:20 AM
Hi all

Had a great time on holiday..................Elise was swimming in the sea  :o
We had our picture taken on the Log Flume.................the one and only ride Elise went on... ;D.........you should see her face !!

All ready for Tuesday now  :-\

She is doing great.................only on 2mg Pred now........

 
Title: Re: Elise's Diary
Post by: Pooh on August 22, 2008, 10:54:36 AM
Oh Craig, what a difference from last summer. :o  It makes me so happy to hear how well she is doing.  ;D Every night when I go to bed I see my little angel and think of her.  :)

Please give her a big hug for me and tell her I hope she has a great school term. 

Hugs and God Bless, Pooh
Title: Re: Elise's Diary
Post by: Scottietottie on August 22, 2008, 10:57:23 AM
Hi Craig  :)

It's good to know that Elise is doing so well. Thanks for keeping in touch about her. Good news stories are so nice to read.

Take care - (((((( hugs )))))) to Elise - Scottie  :)
Title: Re: Elise's Diary
Post by: itssue on August 22, 2008, 12:56:42 PM
Craig,  That is wonderful news!!!!   :)

Elise,
I am so happy for you, it sounds like you had a great summer.  I hope your school year is lots of fun and that you learn lots of new and exciting things.  You bring sunshine into my life. :)   :-*   God Bless you and tons of (((((((((((((((((((((((((HUGS))))))))))))))))))))))) coming at you.

Sue
Title: Re: Elise's Diary
Post by: craigmosley on August 22, 2008, 01:18:54 PM
Had a letter from the postman today..................saying that one oF Elise's short stories (about 20 or 30 words)............has been chosen to be published in a childrens book of short stories.........#


HOW PROWD IS DAD !!!!!!!!!!!!!! ;D ;) :) :D
Title: Re: Elise's Diary
Post by: Pooh on August 22, 2008, 03:55:52 PM
WooHoo!!!!  Elise, way to go little one.  That is so cool.  Congratulations on the publishing of your words. 

Don't puff up to far Dad, you don't want to float away. ;D  You be as proud as you want, she is a great girl.  :D

Hugs, Pooh
Title: Re: Elise's Diary
Post by: YICKelly on August 22, 2008, 05:16:44 PM
What a wonderful double dose of GOOD!  Happy as happy can be.  Prayers coming for next Tuesday.
Title: Re: Elise's Diary
Post by: craigmosley on September 09, 2008, 10:53:50 AM
Hi All......... ;D ;D...............its out and Elise is doing great
She is back at school...................so dad dosnt have a playmate any more  :'(

We dont use the wheelchair any more and she chased me round the car today.......................i did have a bar of choc in m pocket though !! ;D

Title: Re: Elise's Diary
Post by: Linda196 on September 09, 2008, 11:37:02 AM
What great news, and what a delightful picture you paint!

Give her a bug hug from me...if you can catch her!
Title: Re: Elise's Diary
Post by: lynnmarie219 on September 09, 2008, 12:29:09 PM
WOW...I am just catching up on all of the good news!! This is wonderful!! Thanks for keeping us updated Craig and how proud you must be of Elise!!


Elise...you are having a short story published??? That is so cool!!!! Way to go girl......I am so proud of everything you have accomplished!


(http://www.freesmileys.org/smileys/hug008.gif) (http://www.freesmileys.org)(((((((((((((((((Elise and dad)))))))))))))))))(http://www.freesmileys.org/smileys/hug008.gif) (http://www.freesmileys.org)

You both are an inspiration to us all!!!


Keep the good news coming!!! 
Title: Re: Elise's Diary
Post by: Pooh on September 09, 2008, 03:21:49 PM
This is wonderful news!!  No wheelchair................WOW!!  I bet she could catch you regardless of the chocolate bar. :D

I am so happy to hear she is back to school and doing well. 

Sorry you lost your playmate Craig, but I bet you are the happiest person alive at the moment. ;D

I hope all of this continues and things go well forever. 

Hugs, Pooh
Title: Re: Elise's Diary
Post by: mim on September 14, 2008, 02:03:49 AM
Congrats to Elise....

My son had a short story published last year and I know how proud we were of him so your dad must be a bustin with pride well done...

Mim xxx
Title: Re: Elise's Diary
Post by: craigmosley on September 14, 2008, 03:07:11 AM
Im happy just seeing her up and about..............VERY HAPPY.

I can remember first stumbling on this forum.................and how Elise was then.............
The help and support from the members here gives me a big boost.............im glad i found you all xx  :-*

Got go go.............Elise is dunking her biscuits in a cup of tea.................and one has just dropped in........well half has..........the other half is on the floor  :D :D
Title: Re: Elise's Diary
Post by: Pooh on September 14, 2008, 08:06:14 AM
Craig, you need a dog if you don't already have one.   :D  Nothing ever hits the floor from the table around here.  I have 2 magic butlers that will gladly grab it before the mess is made. ;D :D

Give Elise a hug for me, I am so glad to hear she is doing so well.  And it's been a two way street for us too.  We have loved having you and Elise as part of our family.  I don't think any of us will ever forget her and her Dad and how they formed a remarkable team to get her well.  You are one in a million. 

Take care and keep an eye on that girl, she will catch you when you aren't watching.  :D :D

Pooh
Title: Re: Elise's Diary
Post by: genko_b on September 14, 2008, 01:08:42 PM
So happy to hear how well Elise is doing these days. How great she can be back in school and getting around. And what a wonderful support you have been to her all this time.

Take care.

Genko
Title: Re: Elise's Diary
Post by: ktfabian on September 16, 2008, 12:05:31 AM
Craig and Elise-

I am SOOOOOOOOO happy for BOTH of you.  I still have Elise's picture on my board in "my" room - where I do my crafting and such, and I think of her every time I see the picture.  Now I'll be seeing a healthy, happy girl chasing her Dad and jumping on trampolines.

Thank you so much for sharing Elise with us.  I can't speak for the others, but when I see the improvements she's made, I feel like my Sjs is getting better, too.

Way to go Elise!!!!!

Love and Hugs, Tracy (ktfabian) ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D
Title: Re: Elise's Diary
Post by: craigmosley on September 25, 2008, 12:45:51 PM
Well...........its happend  ???

Dad is on Methatrexate now............ :o

Elise thinks its sooooooooooooo funny.......... ;D

I just hate having blood tests  :'(

Maybe i could share Elise's "Emla" cream............ :D
Title: Re: Elise's Diary
Post by: Scottietottie on September 25, 2008, 01:06:07 PM
Aw - sorry to hear that Craig. That's a bummer. hoping you're feeling better soon. I bet Elise looks after you the way you loo after her!

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: Pooh on September 26, 2008, 08:54:58 AM
Oh my, the tide has turned, now the care giver, is the care receiver.  I'm sure your little one will look after real well.  When she finishes teasing you. ;D  I'm sure she remembers her Dad being there for her and she will be there for her Dad.

You two can compare needle pokes. :D  I'm with you and Elise, I don't like needles either.  Needles are for sewing, not for sticking in people. :(

Take care and give Elise a hug for me.  Ask her if she will say a prayer for my PoohBear next Thursday.  She was dx'd with a rapid growing cancer on her left front paw and they going to try to save her leg.  If it has gone to far, she will have to lose her leg.  PoohBear is my best buddy and friend and I don't want to lose her.  Tell Elise she is the doggie I sent her the pictures of. 

Hugs and God Bless,
Pooh
Title: Re: Elise's Diary
Post by: genko_b on September 26, 2008, 09:25:43 AM
Craig:

Sorry to hear you are getting to have treatments as well. I'm sure Elise will look after you.

And Pooh, so sorry to hear about your Pooh Bear's paw. I will keep her and you in mind while on retreat this week.

Genko
Title: Re: Elise's Diary
Post by: craigmosley on September 26, 2008, 09:50:34 AM
POOH.................im sorry to hear that...............i may have someting to cheer you up a little..........

I bought myself a new scanner................if you send me your email address............i can send you the picture of me and Elise on the log flume...........you should see her face.........

By the way...........my old computer went up in "Batman" type smoke and i lost all your email addresses..........if you send your address to im sure Elise would like to send a letter.........
Title: Re: Elise's Diary
Post by: pudmott on September 26, 2008, 01:11:17 PM
Hi craig,
Sorry to hear you have joined the band wagon. At least you have anexpert on hand to guide you through the process.......lol
You need to buy her a little nurses uniform. im sure she'd love to be the nurse rather than the patient for a while.

Pooh,
Im really sorry to hear about Pooh Bear. Myself and cassie and shadow and misty are sending all our good doggie thoughts with you guys


Pud
Title: Re: Elise's Diary
Post by: Katybarstool on September 26, 2008, 01:26:39 PM
Pooh

A hug and a prayer from me and Jaffa too.

Kathyx
Title: Re: Elise's Diary
Post by: Pooh on September 26, 2008, 04:15:18 PM
Thanks everyone, didn't mean to compromise Elise's Diary.  I had sent her some pictures of PoohBear when she was so sick. 

Oh Craig, I know the headache of losing all those addy's, both e-mail and snail mail.  I backed all of mine up on a disk, so now if anything happens to them, all I have to do is upload them from the save disk.  However, now that I have backed them up, they will probably never get lost again.   :D  Isn't that always the way.

Take care everyone.  I would love to see those pictures Craig, that gal of yours is a cutie pie.  I have the picture she sent me stuck on my shelf edge over my computer. 

Hugs, Pooh
Title: Re: Elise's Diary
Post by: lynnmarie219 on September 26, 2008, 07:24:17 PM
Hi Craig.....So sorry to hear that you have to be on the Methatrexate now.....and I'm sure that as the others said...Elise will be a wonderful caretaker to you. She knows how much it meant to have her daddy by her side through everything and she will be there for you too! You both can compare notes!


Please take good care and keep us updated on how you are doing!


Lots of hugs to Elise......I'm so glad that she is doing better these days! 
Title: Re: Elise's Diary
Post by: craigmosley on December 19, 2008, 10:14:45 AM
Hi all...............sorry i havnt sent any cards out yet...................iv been very busy...........my dad has had 2 strokes  :(


Elise is well and looking forward to Santa................


Best wishes...............and a happy Christmas to you all ..............

From Craig and Elise..................xxx :-*
Title: Re: Elise's Diary
Post by: Pooh on December 19, 2008, 01:31:03 PM
A very Happy Christmas and a Peaceful, Happy, Healthier New Year!

Hi Elise!  Happy Christmas little one.  I'm so happy you are doing well and back to school.  I know you must have been busy catching up. 

I think of you every night as I get ready to lay down in my bed.  Your little gift is right there on my headboard, next to my humidifier.  I turn it on and say "Good night Elise, stay well" to the little Angel. :) 

Take care little one and have a great holiday.

Craig, you deserve a break my friend.  I pray God gives you the strength to get through this latest event.  Happy Christmas!

Hugs and God Bless,
Pooh
Title: Re: Elise's Diary
Post by: eyeamdry on December 19, 2008, 02:39:33 PM
I wish a Merry Christmas to you, Elise, and your wonderful Daddy.  May the new year bring better health and happiness to the whole family.  Lucy
Title: Re: Elise's Diary
Post by: ktfabian on December 21, 2008, 04:30:54 PM
Craig-

I'm so sorry to hear about your Dad.  He'll be in my prayers for a full recovery.

I'm behind on my cards, too.  But please be sure that you and that special little girl of yours and all of your family are in my thoughts and prayers, especially during the holidays!

Merry Christmas to you and your family, Craig!
Tracy
Title: Re: Elise's Diary
Post by: elise on January 08, 2009, 04:59:16 AM
Hi guys sorry i havn't posted for quite a while. well, were do i start?
i have been having this stomach pains and bladder pains so i have been wuite hungry and dad took me to the doctors and guess what he said? i have a flu virus......... i had to starve myself for 24 hours no biscuits no hot drinka no fizzy drinks ,,,, just juice you ought to of saw my face!!!! dad promised me at six o' clock in the morning i could have something to eat and set the alarm for six. mum said that i kept asking her "is it  time yet?" and she got up and sneaked down because her throat was hurting so she went down for a hot drink then when she came back up my eyes were wide open and it was about ten to six and straight away i asked "can i have two slices of cheese on toast ?"  ;D :Dshe went down and got me a cup of tea and i ate it all mum  was laughing as i was pigging my food. I have started with a bit of flu because my back and legs are aching so we have decided to go to the doctors on friday and i am expecting them to take some blood. All i want is to know that uim ok and what i have . From Elise xx
Title: Re: Elise's Diary
Post by: Pooh on January 08, 2009, 05:44:06 AM
Well Hello There,
So happy to hear from you again, but so sorry you aren't feeling well again. :(  I sure hope this flu thing is over really quick so you can feel good.

Did you have a nice holiday?  I hope so.  I ate to many cookies, but they were so good. :D  Now they are gone so I guess I will have to go back to eating the right foods.

Say hello to Dad the rest of your family.  I hope you will come back more often and let us know how you are.  We would love to hear about school too. 

((((Hugs)))) and more ((((hugs)))),

Pooh
Title: Re: Elise's Diary
Post by: Scottietottie on January 08, 2009, 08:55:22 AM
Hello Elise  :)  how nice to see you again. Having a flu virus is not nice. It can make you ache something rotten. In a way - I hope that is what it is because it will go away on its own - and that would be good.

Well done managing to 'starve' for that long!   It's a good sign that you want to eat though. If the flu really gets a hold it stops people feeling hungry!

I hope you feel better relly soon. Do let us know what the doctor says tomorrow!  Oh - and how is your Dad? It sounded like you would maybe have to look after him a bit now too!!

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: elise on January 09, 2009, 03:09:39 AM
Thanks Scottie and yes i did have a good holiday thanks pooh,, i had flu on christmas though lol.
did you all have a nice christmas?

dad is a bit better with his elbow but it still hurts him and yesterday he had a really bad back.
i am going to the hospital later so i'll either reply later on or tomorrow
Take care,

Elise xx
Title: Re: Elise's Diary
Post by: elise on January 09, 2009, 10:49:20 AM
Well i've been to the hospital.

They checked my vital signs and for anything abnormal and all was ok.
she felt my organs as well and she couldn't feel anything abnormal there either.
but apparantly i have bowel infection.
They gave me three bottles to fill my poo inside so they could check it and some foil bowels to catch them in .
They also wanted a urine test so it was a good job that i needed the toilet!
i have had to have a blood test . 2 yellow small bottles and 3 purple little bottles.
BUT ....... THE BAD NEWS IS......... The first time they could see my vein and as soon as my nurse [liz] Sprayed the cold numbing spray the vein dissappeared and she couldn't get the vein!!! so they tried the other hand and FINALLY it worked but im just sore lol  From

Elise xx
Title: Re: Elise's Diary
Post by: Pooh on January 09, 2009, 11:05:22 AM
Oh dear, you had all that good YUCKY stuff today.  :D So glad to hear all is okay though. ;D  I have those veins that like to hide also. :-\  I have a real good tech that takes mine though and he finds it right away so it doesn't hurt much.   :)

I hope your arm feels better soon.  ;D  Take care and let us know what the rest of your tests show.  We all have to have those from time to time. 

Sure hope your tummy infection clears up quick. 

((((Hugs)))) Pooh
Title: Re: Elise's Diary
Post by: elise on January 09, 2009, 11:09:58 AM
Thanks Pooh [[[[[[[[[[Hugs]]]]]]]]]]]]]




Elise xx
Title: Re: Elise's Diary
Post by: Scottietottie on January 09, 2009, 11:51:08 AM
Oooooooh those needles are not nice!  Vampires!!   Taking our blood!  It's amazing what they learn from it though. I hope you find your urine is OK and that they sort that bowel infection out soon.

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: elise on January 10, 2009, 03:48:36 AM
Thanks Scottie you take care too!!!

I'm okay today i just have these pains in my hand when i try to lif things....... it is very weak but i havn't had it before....

does anyone know what it could be?

Could it be my flu?


Elise xx
Title: Re: Elise's Diary
Post by: Scottietottie on January 10, 2009, 12:12:01 PM
Hi Elise   :)

Flu can make you ache all over!  The other thing it could be is a touch of arthritis maybe. I'm not a doctor so I really don't know. I hope your blood tests give you the answer you're looking for.

x x Scottie  :)
Title: Re: Elise's Diary
Post by: elise on January 10, 2009, 12:21:55 PM
Thanks...... I'll look out for that i also have cramps a lot but i have been doing a lot of writing lately lol .



Take Care


Elise xx
Title: Re: Elise's Diary
Post by: craigmosley on January 12, 2009, 06:49:09 AM
Hi All..................

Sorry i havnt been around for a while..............iv been looking after Elise  ::)

Sorry for Elise's graphic detailed posts.............hope you wasnt eating when you saw them....... :D

All is fine here......now.............just waiting for the results.............

Hope you all had a good holiday.............
Title: Re: Elise's Diary
Post by: elise on January 12, 2009, 08:19:27 AM
Monday 12th January 2009

This weekend we has thinking about going to school again but we decided that i'm not ready for school yet.
I asked dad when he thought i would be ready to go to school again and he said when im better. When the doctors know what i have and when they are treating it. The question is now how long? I am beginning to miss school and my friend Ellie.
Ellie was looking forward to it when i told her at the weekend i was coming to school today.I shouldn't of said.
I have a new teacher and Ellie told me that he's really kind..... better than out last teacher she said. My last teacher was horrible.... she didn't let me go to the toilet when i needed it and wouldn't let me have a drink when i wanted one. One day i forgot to bring my juice bottle home so i bought in a fruit shoot. When i went to get a drink i noticed that it had gone .......  i then looked into the bin and found it there!!!! my mouth was open in shock and i was so angry! I went to my teacher and told her . She said "Drinks that are left overnight go in the bin " so i said "it wasn't left overnight it was new this morning " "nothing we can do about it now " God i hate that teacher!!! Her Name was Miss Bowness and my new teachers name is Mr Tronauldan.
Earlier on i started getting belly pains but it went half an hour after. I was in really bad agony with them.
How is everyone?

Take care

Elise xx
Title: Re: Elise's Diary
Post by: Scottietottie on January 12, 2009, 09:59:47 AM
Hi Elise  :)

I think its a really good sign that you are wanting to go back to school because it must mean that the flu is on its way out. I'm sorry your belly is sore. It can take a while to settle.

I hope your teacher knows that you have Sjogren's. Even if no one else in the class is allowed a drink - you ought to be under the circumstances. It's good you have a new teacher. I agree the last one sounded horrible.

I hope you get answers to questions soon and get back to school with your friends!

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: elise on January 12, 2009, 11:38:21 AM
Thanks Scottie.

I hope that my teacher has told him that information too.

If not i think dad will tell him and if he hasnt done it then he will tell him again. ;)
I think that they should have a meeting to go through all my needs and what i need help with.
I will also remind dad to tell him that i need to sit on chairs because when i sit on the carpet i feel too clostiphobic [however you spell it  :D] and i get back pains and my legs start to ache...... I think im getting worse!!!

Take Care,

Elise xx
Title: Re: Elise's Diary
Post by: ktfabian on January 12, 2009, 03:58:16 PM
Elise-

I've been thinking about you lately and here you are, though I'm sorry that you're not feeling well.  With my son going to Iraq tomorrow night, I've been submitting a lot of worries to my Little Angel!

I hope your Dad can work out the special considerations you need in school.  Certainly, if one of us Sjoggies needs a drink, no teacher should be allowed to stand in the way! And I'm with you, sitting on the floor hurts my back and legs, too.  It sounds like this year's teacher is much nicer and hopefully will be willing to work with you and your Dad.

I hope by now you've gotten your blood work back (though I'm sorry they had to stick you with their needles :P) so they know what you have and can get rid of it.

Take care, Sweetie, and feel better,
Tracy
Title: Re: Elise's Diary
Post by: elise on January 14, 2009, 04:10:10 AM
Thank you for your advice Scottie.... Sorry that i didn't reply yesterday i was kinda upset that i couldn't make a new post because dad has this PC game and he has printed cheats for it . It is this war game called Age Of Mythology - Gold Edition.
He was on it all day so i was just listening to my ipod lmao. It was really boring though because i enjoy reading the replies and i enjoy making new posts too. This tummy ache is really annoying me and starting to get me down. Its every time i want something to eat ........ i enjoy sitting at the table having my dinner and half way through i have to stop to go to the toilet. I get bad belly ache until i have a number 2. [not to be mentioned] We are now waiting for the results of my stool samples. I noticed that they were a light  coulor for a number 2. I thought i saw a bit of a crisp in the bottle and it was!! Haha! :D I have this bowel infection and my stomach isn't digesting my food enough so i poo it straight out. i am only on one tablet called omeprozol and it is to stop me from producing too much acid. [im on my injection too.] i had my injection this morning [ by dad]. So dad thinks that i am producing too less acid and is hoping for me to come off my omeprozol. i have had this for over a week now and im sick of it. i just feel like not eating [even though i do get hungry] . But dad said that i have to eat or i will be straight back in hospital.
Want some more news? Well my two sisters have a step mum and they went to her house over the weekend and yvonne [their stepmum] has some sort of virus. she was being sick and was very weak. but she isnt balemic. im not allowed to catch it so emma and linsey go to mums house and mum comes to visit me but she isnt allowed to get too close because she could have it and give it me. i am eating but pooing some of it out and if i get the sick virus i will be straight back into hospital because i not be eating at all i would be puking it all back up.  :'( the thing is im not allowed to kiss my mum ;[. Well today  mum came round but not for long. she stopped for a couple of hours. Sorry for the long post lol.

Take Care,,
Elise xx  [
Title: Re: Elise's Diary
Post by: Pooh on January 14, 2009, 06:07:02 AM
Hello Elise,
My goodness you are having an awful time with your tummy.  I'm so sorry you have something else making you sick. 

I'm glad you have a new teacher and don't have to go back to that horrible one.  Sounds like a teacher I had in when I was going to school.  (Long, long time ago. :D)

I hope you and your Dad feel better soon.  I also hope he lets you use the computer more.  We love hearing from you. 

Reading your posts always make me smile (except when you are feeling bad).  I hope you get to go back to school soon.  I know how it feels when you miss your friend Ellie.  I have a best Carolyn and when I don't get to see her for a while, it makes me sad. 

Ut oh, I am about to have very warm feet. :D PoohBear and Paddy are both trying to lay on feet at the same time.  It's gets very crowded under my desk when this happens.   ;D

Take care little one and I hope you feel better soon and get back to school.

Hugs, Pooh
Title: Re: Elise's Diary
Post by: elise on January 14, 2009, 06:42:20 AM
Lol. I would love a dog........... I used to be scared of dogs. I went on holiday and my grandads friend called harry had a dog called Jake. It is ever so small and cute.Heis 12 years old and dead tiny!I started stroking him and feeding him and giving him water. Then i went to my nana's and they have a massive Labrodaur Called CoCo.His Skin is a chocolate coulor.He is six years old and Huge!! Lmao They're All Opposite.


Take Care Pooh,,
Elise xx
Title: Re: Elise's Diary
Post by: Scottietottie on January 14, 2009, 09:32:10 AM
Hi Elise  :)

I'm sorry your stomach is causing you so many problems. I'm glad your docs are trying hard to get to the bottom of it. I take Omeprazole too - for the stomach acid.

It could be that your diet needs to change and that there are some foods it's best not to eat. The doctors will be interested in the number 2s being an odd light colour. I hope you get the test results back soon.

I have a friend whose daughter had to try to cut gluten out of her diet. She was having awful stomach aches but when she went on a gluten free diet she felt ever so much better. I'm not suggesting that for you but I'm sure the doc will try different things till they get you sorted out.

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: peacefulstorm on January 14, 2009, 10:14:21 AM
Quote from: elise on January 14, 2009, 06:42:20 AM
I went on holiday and my granddads friend called harry had a dog called Jake. Then i went to my nana's and they have a massive Labrador Called CoCo.His Skin is a chocolate color.He is six years old and Huge!! Lmao They're All Opposite.

This hit my funny bone because my son's name is Jake and I have a Lab mix named CoCo as well! Thanks I needed a lil chuckle, I hope you are feeling better soon!
Cortnee'
Title: Re: Elise's Diary
Post by: elise on January 14, 2009, 11:05:03 AM
Lol thanks Scottie and Cortnee.
I know i have been moaning a lot about my stomach lately.
Sorry For being a "moaner" lol.
i had my methetrexete injection this morning and it usually makes me tired and i am tired lol.



Take care ,
Elise xx
Title: Re: Elise's Diary
Post by: craigmosley on January 16, 2009, 02:37:00 AM
Friday 16th January 2009.

Today i got up and i made the beds and i drawn the curtains and i did a bit of tiding up.
We have someone to view our house later at 2PM.
This morning i started getting belly ache again.....

The good news is.... Yesterday we got a phone call from my doctor Jane Ellis and she said that i can come off my 20mg of Omeprozol.... so hopefully my stomach will be getting better....... its 10:35Am and dad is doing me some spaggetti [ tin one with tht sauce with it ] he was going to do me spagetti on toast but i said " I want it on its own " . haha.
Take Care

Elise xx :-*
Title: Re: Elise's Diary
Post by: elise on January 16, 2009, 02:39:19 AM
Sorry i thought i was signed inn as me and i was signed in as dad.... oops lol :o
Title: Re: Elise's Diary
Post by: Pooh on January 16, 2009, 05:42:46 AM
Good Morning Elise,
Wow! spagethi sounds great.  That's what I'm fixing for dinner tonight.  Did you enjoy it? 

Did you have a good day today?  Here mine is just starting and yours is way ahead of me.  I find the time differences really awesome.  Even here in the US it's 3 or 4 hour difference from the West coast to the East Coast. ::)

Well, you have a great day, I'm just getting up and started so I guess I'd better feed PoohBear and Paddy. ;D

Hugs, Pooh   

Title: Re: Elise's Diary
Post by: elise on January 20, 2009, 11:14:43 AM
Lol thanks Pooh,

Make sure those dogd dont nibble your fingers!  ;D I did enjoy it thanks  :D

I went to school for the afternoon today and my new teacher is really nice. When you first saw the big grin on his face we knew that he was great!!!!!

He said to me that if there is anything else he can do for me then just tell him and he'll do it.
I enjoy my lessons but when i come home i am tired. I enjoy having fun with my best friend Ellie...... BUT she got told off today for running round the computer hall  :D it was really funny because when he went away i said to her " naughty ellie!!! you shouldnt run in the computer hall " she just laughed and said "shut up and pulled a funny face..... thats out way of fun.... i started getting quite hungry too and i told ellie and ellie told the helper Mrs Marsh. i lied and said that i wasnt hungry but then i told the truth and said i was. its just i get scared because people stare at me and ask for some food and i get embarrased. People might even think that im a greedy pig!

I had P.E For my next lesson. Me and another disabled child called Ethan was throwing these 3 little bean bag toys into hoops and i kept scoring and ethan wasn't very good at it. He kept moving the hoops because i was winning and he was loosing but i kept scoring and scoring. BUT something quite funny happened... He threw his bean bag up into the air and it was on the ceiling but a bit down onto the shelves with curtains at the top.... i couldn't stop myself from laughing. Ethan fell in love with a teddy and didn't want to throw it because he liked it.... he then said that he and the teddy was going to get married.... how scary!!! Lmao

Take Care,,

Elise xx
Title: Re: Elise's Diary
Post by: Scottietottie on January 20, 2009, 01:36:36 PM
Hi Elise  :)

I can feel the smile and laughter in your writing! Sounds like you had a fun day!  ;D

That's what you need - lots of fun days. I'm so glad you like your new teacher too.

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: elise on January 21, 2009, 12:44:57 AM
Thanks Scottie.

It was actually really funny because ellies face when she was getting told off was bright red !  ;D

I woke up this morning, so scared of my injection im like dad can i have it later? he said yes lol.  :D

I am going to the hospital in a minitue or two. I am going to see Jane Ellis at Kingsmill.

Take Care,,

Elise xx
Title: Re: Elise's Diary
Post by: elise on February 02, 2009, 03:57:42 AM
Monday 2nd January 2009.

Last night i woke up to go to the toilet and i couldnt see anything in the dark...
and i felt my leg twist so i have sprained it really bad.... so now i am struggling to walk and sometimes dad has to carry me!

Whats the best thing to do to make it go quick?

Thanks xx

Elise xx
Title: Re: Elise's Diary
Post by: Cynde61 on February 02, 2009, 06:50:22 AM
Aww Elise, sorry to hear you hurt your leg.  I wish I knew what to tell you to fix it, but I'm afraid I am not smart enough with things like that. 

I do hope you are feeling better soon and you are a lucky a girl to have a Dad that will carry you about. 

C
Title: Re: Elise's Diary
Post by: Scottietottie on February 02, 2009, 07:06:34 AM
Hi Elise  :)

I'm afraid twisted ankles just take their own time to heal. They can't really be rushed. Casualty could maybe lend you a pair of crutches to help you get about until you can put some weight on it.

I hope its a lot better now - I see it was a while ago you posted. Sorry I missed it.

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: elise on February 02, 2009, 11:21:17 AM
Thanks you two . :)

Im going to the hospital on Friday so we will ask them then for some cruches because i can hardly walk .

I've been out in the snow and threw snowballs at dad.

Dad said " Theres a snow angel " and i said "were?" and he layed down in the snow and said " There!"

LMAO!!!  ;D :D
Title: Re: Elise's Diary
Post by: ktfabian on February 02, 2009, 06:26:13 PM
Hi Elise-

Are you going into the hospital to stay on Friday or just for an injection or tests?  I hope it's just for a quick visit and not an overnight stay.

I hope your ankle is healing.  Even tho I'm old (48year old) I have to have night lights in most of the rooms of my house - especially the hall going to the bathroom, because I'm very much afraid of falling and twisting or bruising something.

Do take care - I suspect you are your Dad's Angel!

Good luck at the hospital Friday,
Tracy
Title: Re: Elise's Diary
Post by: elise on February 06, 2009, 12:47:29 AM
Thanks kt fabian...

I am just going to the hospital today for a quick check up...
 
The people at queens medical centre go to kingsmill monthly .
so i will be going to hospital every month for a check up.

Sometimes they say that they will need a blood test though.  :P

Lets just hope i dont have to have any tests lmao!!

From elise xx
Title: Re: Elise's Diary
Post by: elise on February 14, 2009, 01:15:41 AM
Saturday 14 febuary 2009

Today i am aching [ my hips and legs]. I am just going to take it easy lmao.

HAPPY VALENTINES DAY EVERYONE!!!!

Take care,

Elise xx
Title: Re: Elise's Diary
Post by: lynnmarie219 on February 14, 2009, 01:49:42 AM
((((((((Elise))))))) I have missed your posts....and just now got caught up on them! I'm sorry for all you have been through recently!

Hows the ankle and stomach doing?? Better I hope!

Happy Valentines Day to you too!! (http://www.freesmileys.org/emoticons/emoticon-object-099.gif) (http://www.freesmileys.org)

Rest and enjoy yourself and I hope your aches and pains go away soon!


Title: Re: Elise's Diary
Post by: Pooh on February 14, 2009, 07:26:04 AM
Hi Elise, sure hope you are feeling better.     

Hugs, Pooh

HAPPY VALENTINE'S DAY!!! :D
Title: Re: Elise's Diary
Post by: genko_b on February 14, 2009, 12:44:20 PM
Happy Valentine's Day to you, too, Elise, and to everyone else here as well. I am relaxing in bed today.

Genko
Title: Re: Elise's Diary
Post by: elise on February 14, 2009, 01:14:04 PM
Thanks everybody.

My stomach is okay.. just the same really lol.

Hows everybody?

Take care,,

Elise xx
Title: Re: Elise's Diary
Post by: elise on February 15, 2009, 01:55:56 AM
Sunday 15th febuary 2009

i have only just woke up x im having fried egg, beans ,bacon , 2 slices of bread with butter on and sausages for my breakfast! YUM YUM!  :P

tuesday i am going to the hospital for some bloods and to make an appointment for an ultrasound scan.

Take care,

Love Elise xx
Title: Re: Elise's Diary
Post by: pudmott on February 15, 2009, 02:54:37 AM
Elise that breaky sounds so yum. my tummy is rumlbing just thinking about it.
I went to a concert the other night to see the Veronica's i dont know if you know them they're an Aussie girl group. Man my throat is so sore from singing at the top of my lungs...........lol.
 
I hate to think what my throat is going to be like when i see P!NK.

Hows our ankle going? I hope itis getting better.

take care and keep us update with those funny stories from school

Pud
Title: Re: Elise's Diary
Post by: elise on February 16, 2009, 01:03:32 AM
lol i hope your voice getts better and yes thanks my ankle is better :]

Hows everybody?

Take care,,

Elise xx
Title: Re: Elise's Diary
Post by: Pooh on February 16, 2009, 09:10:34 AM
Hi there Little One how you doing today?  So glad to hear that ankle is getting better, let's not do that again.   ;D

Did you get any of the snow that hit Great Britain?  I think our real cold weather is over, I hope. :D  PoohBear and Paddy don't mind it because they have thick fur coats, but I'm not partial to it at all.  I love spring the best of all seasons.  I can't wait for the green and the flowers. 

Take care and stay safe,

Hugs, Pooh
Title: Re: Elise's Diary
Post by: elise on February 17, 2009, 02:58:04 AM
thanks pooh,

the pain in my ankle has gone now x
yes the snow did come ... it was blooming freezing!! Im glad its gone though.  :D
i Went to the hospital today and had a blood test... my blood was going really slow and they was counting each drop from the syringe. i needed a lot of blood!!! on the syringe i needed to get seven and a half!!!!

Im glad its over with now x

Thanks Pooh,

Take care,,

Elise xx
Title: Re: Elise's Diary
Post by: lynnmarie219 on February 17, 2009, 05:33:27 AM
Elise....

I'm so glad to hear that your ankle is better.....I have had an ankle problem going on for many months, but its slowly getting better now with physical therapy. I'm glad that yours didn't hurt that long! ;)


So good to hear that the blood tests are over too......those are for sure no fun!

Take care Elise.....sending lots of hugs to you too! (http://www.freesmileys.org/smileys/smiley-hug008.gif) (http://www.freesmileys.org) And tell dad I said hi....hope he is well!!
Title: Re: Elise's Diary
Post by: elise on February 19, 2009, 06:13:05 AM
Thanks Lynmarie ;]
Title: Re: Elise's Diary
Post by: elise on February 27, 2009, 10:41:50 AM
Heya Guys,

it is six o clock right now. Tonight me , mum dad and my sister are going to a line dancing club called triple S.

we are getting there for eight o clock. so its eight till late  :P

i have no idea what time i will get back lol.

So Byes everyone xx
Title: Re: Elise's Diary
Post by: Pooh on February 27, 2009, 11:44:06 AM
Hi there Elise,
I hope you have a great time and get to dance.  Take care and let us know how it goes.  :D

Hugs, Pooh
Title: Re: Elise's Diary
Post by: Scottietottie on February 27, 2009, 11:47:31 AM
Line dancing can be fun!  Do tell us all about it after you've had a good night's sleep!

It's so encouraging to hear you're doing so well.

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: elise on February 28, 2009, 02:58:58 AM
It was sooooooooooo great!!!!!!! i had a birger and kept knicking linseys scampi XD

i didnt get up to dance bcz i dnt no the dances lol

i got back at half eleven :D

hows everybody?

elise xx
Title: Re: Elise's Diary
Post by: Scottietottie on February 28, 2009, 12:59:48 PM
I'm so glad yopu had a good time. Do you feel like learning the dances? Maybe there's a beginners line dancing class somewhere near you!

Hope you've survived your late night!   :)
Title: Re: Elise's Diary
Post by: lynnmarie219 on February 28, 2009, 02:22:20 PM
Hi Elise!

Wow you had a late night out...but it sounds like you had a lot of fun! Maybe you can learn the dances like Scottie mentioned and pretty soon you will look this....(http://www.freesmileys.org/smileys/smiley-dance011.gif) (http://www.freesmileys.org)   
Title: Re: Elise's Diary
Post by: genko_b on February 28, 2009, 02:40:16 PM
Hi Elise:

It's great to hear you are doing so well, going out to dances and so on. You are an inspiration to us all!

Genko
Title: Re: Elise's Diary
Post by: elise on March 01, 2009, 11:27:31 AM
Thanks for all the replies everybody.
I wasnt expecting so many that soon!

Im okay today thanks but i miss my mum lol.

Lynmarie that dancing banana is soo funny!!
Yes i do like line dancing thanks scottie ;]
Im having corn on the cob for my supper!! yummy yummy ! oh dads calling bye x

Elise xx P.S i only just survived  ;D :D
Title: Re: Elise's Diary
Post by: pudmott on March 01, 2009, 12:30:27 PM
Elise if you begin to look like lynnmarie's Banana you might wanna get it checked out hey...... :D :D :D

Line dacing is quite big here in country Australia. Each year there is a big festival a few hours from me and each year they try to break the record for the longest line dancing effeort in one place. they usually get it too

Glad you had a good time

Pud
Title: Re: Elise's Diary
Post by: kimbo on March 01, 2009, 06:01:04 PM
Elise, I just want to thank you for inspiring Lnnmarie to bring out her dancing banana.

I love to watch the line dance. A few times I have thought I would love to join in. Then I get a visual of me being the begining of the domino factor, I would probably bring the whole line down.

Happy dancin, kimbo
Title: Re: Elise's Diary
Post by: elise on March 23, 2009, 09:47:33 AM
Hiya people and thanks for your replies ;D

Well ive had a school meeting, Hopefully i not get measles,mumps,chicken pox etc egen. They are not sure. Tommorrow i am having a full day at school. i Feel quite confident actually.

Sorry i havn't replied much recently, ive been quite busy  :D

So how is everybodyy??


Elise
xxxxx
xxxx
xxx
xx
x
Title: Re: Elise's Diary
Post by: Scottietottie on March 23, 2009, 12:52:56 PM
Hi Elise  :)

You are sounding good! I hope your full day at school went well. It's great to hear when someone is doing better.

Someone has joined the forum recently who has a four year old with SjS. I suggested she come and look on your thread to see how well a young person can cope with this.  You're an inspiration!

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: kimbo on March 23, 2009, 04:52:05 PM
SCHOOL DAZE  :)  Great fun, I hope you stay healthy so you may enjoy your friends and all the activities. Keep us posted on your highlights and lowlights. We love to keep up with you.

Blessings kimbo

X
XX
XXX
XXXX
XXXXX
 :) :) :) :)
Title: Re: Elise's Diary
Post by: elise on March 24, 2009, 12:50:30 PM
Thanks  Guys  ;D

P.s  Scottie..... a four year old? i bet thats hard! Wishing all my luck for Her/Him.
Well i went to school at half past ten today and it was fine!

im just a bit tired and achy.

Take LOTS and Lots Of Care  ;D

Elise xxxxxxx
Title: Re: Elise's Diary
Post by: elise on March 25, 2009, 03:54:15 AM
I Hope that your all okay x

i'm going to school just for the afternoon. ill tell you howit goes laterr ;]


Take Care,

Elise xx
Title: Re: Elise's Diary
Post by: Linda196 on March 25, 2009, 04:47:44 AM
You always brighten my day, Elise. It's so good to hear of you getting back to a "normal" life, just as a young woman like yourself deserves.

Title: Re: Elise's Diary
Post by: ktfabian on March 25, 2009, 08:31:28 AM
You always brighten my day, too, Elise.  It's SO good to hear you sounding full of energy and getting back to doing all the things a girl your age should be doing.
Have fun and enjoy every day, you deserve to!
All my best to you, Tracy (aka ktfabian)
Title: Re: Elise's Diary
Post by: elise on March 26, 2009, 02:11:07 AM
thank you guys... well yesterday was fine. But the worst part WAS: i had to go to bed at half past eight because im going at half past ten to half past three todayy  >:(

Im a bit worried  :-\


So ill tell you what happens...Again ... when i come home,, i think i will feel a bit tired. and Tommorrow i am having physiotherapy...... Instead of school!!  :-\    Phew!  I Would Love A Break!!!

Take Care!!!,

Elise xx
Title: Re: Elise's Diary
Post by: kimbo on March 26, 2009, 11:54:59 AM
Elise,

It sounds like everything in your world is half past.  ;D

I hope they make your physiotherapy fun for you. Maybe like with music or something to give you a beat to move your body to. :)

Hope you had a great day today,  kimbo
Title: Re: Elise's Diary
Post by: lynnmarie219 on April 05, 2009, 06:49:37 AM
Elise,

I'm glad to hear how well you are doing lately.....you sure are keeping yourself busy and that's good! Keep up the great work and thanks for keeping us updated!

(http://www.freesmileys.org/emoticons/emoticon-object-027.gif) (http://www.freesmileys.org)
Title: Re: Elise's Diary
Post by: Pooh on April 05, 2009, 11:32:47 AM
Hi Elise,
Gosh, it sounds like you are having a busy time of it.  If I remember correctly you have a big day coming up this month.  Maybe a birthday? ;D

I hope you are having some fun with all the rest of your activities.  That line dancing sounded like fun.  I've never tried it, but my grandson is a great line dancer. 

Take care little one and have a great spring.  :D

Hugs, Pooh
Title: Re: Elise's Diary
Post by: Bucky on April 17, 2009, 08:41:37 PM
Hi Elise,

I had written down "somewhere" when your birthday is . . .now, I can't find the paper!!  Grrrrrrrrrrr   But . . . I'm thinking it might be today??  If not today, than it was within the last week.

Anyhow . . . HAPPY BIRTHDAY ELISE!!   ;D

I hope you have/had a great birthday day!! 

Take care,
Bucky
Title: Re: Elise's Diary
Post by: jonnell on April 18, 2009, 05:29:07 AM
HAPPY BIRTHDAY Elsie Hugs and Kisses from Jonnell and Jenna
Title: Re: Elise's Diary
Post by: kimbo on April 18, 2009, 06:55:09 AM
  HAPPY BIRTHDAY ELISE !!!!!!!

 XOXOXOXO

kimbo
Title: Re: Elise's Birthday
Post by: Bucky on April 20, 2009, 04:52:31 PM
Hi Elise,

I finally found the piece of paper that had your birthday listed.  It was yesterday, April 19th.  HAPPY 10TH BIRTHDAY ELISE.   ;D

Hope it was a happy one for you!!

Bucky
Title: Re: Elise's Diary
Post by: elise on April 22, 2009, 11:59:17 AM
lmao thanks...  ;D

how is everybody



Take Care,

Elise xx
Title: Re: Elise's Diary
Post by: craigmosley on April 22, 2009, 01:59:29 PM
Hi all................Sorry i havnt been on for a long time.........My Dad and Elises Grandad passed away :'(


I bought Elise a Digital Camera for her birthday..............she has become obsessed with taking pictures of.............................................................FEET !!!!!  :D :o ::) ;D..................Dont ask me why lol

I made sure she had a nice day and also got her a cake...................in the shape of a monkeys face.........ha ha

 
Title: Re: Elise's Diary
Post by: jonnell on April 22, 2009, 03:43:57 PM
Hi Craig sorry to hear about your dad.  My thoughts and prayers are with you and Elsie.  Wanted to let you know they put Jenna on Plaquinil and also diagnosed her with joint hypermobility syndrome and asthma.   Now she has to see a pulmonoligist.   I hope you are okay.   Hugs and Kisses Jonnell and Jenna
Title: Re: Elise's Diary
Post by: Bucky on April 22, 2009, 04:53:32 PM
Craig - my condolences on the loss of your father.   I know how hard it is to lose a parent.

Elise, sorry about your Grandad.  Grandads are real special people and I'm sure you will miss him.  Cherish the times you spent with him and always keep his memory in your heart.

A monkey faced cake???  How cute!!!  I love cake.   ;D

Why are you taking pictures of FEET?  Cute smiles are soooooo much more fun than pictures of feet!!   LOL  :)

Bucky

 
Title: Re: Elise's Diary
Post by: Scottietottie on April 22, 2009, 04:58:05 PM
Hi  :)

I'd like to add my condolences. A difficult time for any family. How are you both?

never thought about photographing feet but that could be really interesting actually!  Going to make a foot collage????

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: kimbo on April 22, 2009, 05:33:48 PM
Hey Craig and Elise,

So sorry for the loss of father and granddad of Elise.  I am sure you both have a heart full of memories.

A monkey face birthday cake.... hmmmm.  Elise, I hope your planning your daddy's birthday cake.  ;D

Those pictures you take could come in really handy. The bakery can use your picture to place the image on a birthday cake.

Just a thought  :)

blessings kimbo



Title: Re: Elise's Diary
Post by: KYMOM on April 22, 2009, 06:42:14 PM
Craig and Elise, Just found the diary and will have to find the time to come back and read through it.  Want to send my sympathies to both of you on your loss.  You are in my thoughts.  Roxanne
Title: Re: Elise's Diary
Post by: Linda196 on April 23, 2009, 03:52:30 AM
So sorry for your loss, but I'm glad to read how you are carrying on, and I bet your Dad/Granddad would be proud of both of you!

A monkey faced cake, is it? Brings to mind active, mischievous and full of fun! Must the meant for both of you! I'm sure that there's a symbolism in the fascination with photographing feet, must mean something like "walking on", getting active, and possibly dancing through life? I must admit, feet can be quite attractive, but then there are some (like mine) that are just downright funny looking!
Title: Re: Elise's Diary
Post by: ktfabian on April 23, 2009, 04:12:17 AM
I'm so sorry to hear of your loss.  You are all in my prayers.

Elise, Happy Birthday! a bit late.  A monkey face cake sounds unusual, but you're a very unique young lady.  As for pictures of the feet, why not?  It's easier than taking pictures of your own hands with your own camera, right?

My best to both of you, Tracy
Title: Re: Elise's Diary
Post by: JannaLee on April 23, 2009, 07:30:54 AM
Elise,

I want a piece of cake right now!

Happy birthday pretty girl!

My best to you and your Daddy who loves you so much!

Janna



Title: Re: Elise's Diary
Post by: itssue on April 23, 2009, 02:36:02 PM
Hi Elise,

It's never too late to wish a Happy Birthday, so HAPPY BIRTHDAY SWEETIE!!!! 

I'm so sorry to hear about your granddad, always cherish the wonderful memories you have of him and he will remain close in your heart.

Take care and have fun taking pictures of feet.  ;D

Sue
Title: Re: Elise's Diary
Post by: lynnmarie219 on April 23, 2009, 07:05:31 PM
Hi Elise!

HAPPY BELATED BIRTHDAY from me too! Sorry that I'm late...but better late than never right? 

I'm so sorry to hear about your dad Craig and your granddad Elise....its hard to lose someone we love...but we always keep their memory alive in our hearts...so they never really leave us.

Hugs to you both!
Title: Re: Elise's Diary
Post by: craigmosley on May 02, 2009, 06:24:43 PM
Hi All............

Elise's pancrias isnt working right at the moment...........there is a possibility that it may be liver trouble but they think its more likely to be the pancrias.......another tablet at meal times..........i hope

How is everyone ?

Elise is now onto noses with her camera............lol..............she makes me howl with laughter....... ;D



Title: Re: Elise's Diary
Post by: lynnmarie219 on May 03, 2009, 09:50:40 AM
I'm sorry to hear that Elise is having more problems...I hope they are able to figure out what is going on soon and that they are able to help her with whatever she needs...she has been through enough.

Noses now huh? Oh well...sooner or later maybe Elise will get to photographing the whole person....maybe not....she may be an artist in waiting and have her own photo exhibit someday of feet and noses and you will be proud! lol


You go Elise! (http://www.freesmileys.org/smileys/smiley-hug008.gif) (http://www.freesmileys.org)
Title: Re: Elise's Diary
Post by: JannaLee on May 03, 2009, 10:10:27 AM
I love nose pictures!  Wish I could be in one of her photo's!

I sure hope Elise will be able to get relief from pancreas problems and also that this is NOT an indication of liver problems!

Love to your family, love to sweetie Elise!
Janna
Title: Re: Elise's Diary
Post by: TerriJ on May 03, 2009, 11:00:10 AM
I'm so sorry to hear about the loss of your dad Craig and your grandpa Elise.  Cherish the memories!

I hope the doctors will figure out the problem with your pancreas soon and that you can get the treatment you need.

Photography is a little hobby of mine.  I think pictures of noses and feet are very cool!!!  I also happen to think that the monkey face birthday cake is cool too!  We have to find fun in life wherever we can! ;D

Take care.
Terri
Title: Re: Elise's Diary
Post by: craigmosley on May 13, 2009, 03:46:34 AM
Hi all.............
Elise had a hospital appointment yesterday...........

Her Pancreas has shrunk........but only the bit that controls the stomach acids and NOT the sugar side.
They want to do a liver biopsy.........just as a referance point incase they need to do further checks later on in life...............dont think im too keen on that...............what do you all think ??
Title: Re: Elise's Diary
Post by: Scottietottie on May 13, 2009, 06:39:19 AM
Hi Craig  :)

Poor Elise - not something else!! Life just is not fair! I'm not sure exactly what a liver biopsy involves. I believe its a relatively simple procedure

but I can obviously understand you not wanting anything unnecessary done as Elise has been through so much already. What does the young lady think about it herself?

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: jonnell on May 13, 2009, 02:06:38 PM
Hi Craig give Elsie a hug from me and Jenna.  I am sorry for what she and you are going thru ,  your in my thought and prayers.   
Title: Re: Elise's Diary
Post by: craigmosley on May 31, 2009, 01:00:40 PM
Hi all.................

Just come back from a holiday...........Elise not very good...........

She is very tired and off her food..............it may be a bit too much sun.................

Creon tablet (for her pancreas) seems to be working (when she is eating)...........im just glad she forgets to take her camera when she "goes" !!......... :D :D
Title: Re: Elise's Diary
Post by: jonnell on May 31, 2009, 03:28:16 PM
Craig sorry to hear about Elsie,  thoughts and prayers are with you both.  Hugs and Kissess   Jonnell and Jenna
Title: Re: Elise's Diary
Post by: lynnmarie219 on May 31, 2009, 04:40:49 PM
Sending lots lots of positive thoughts, hugs and prayers your way.....you have both been through so much and I hope for some more "feeling better times".

Keep us updated.....
Title: Re: Elise's Diary
Post by: craigmosley on June 10, 2009, 04:27:30 PM
 :'( :'( :'( :'( :'(

Im sorry to inform you all........................Elise is seriousely ill in hospital  :'( :'( :'(

Some how this horrid disease has got into her brain and caused it to swell   :'( :'(

As you can guess .............. im not in good shape and would be great full if the moderators of this forum would be able to email me a copy of "Elise's Diary"..

Please could you all say a prayer for my little girl ??

my email is craig.mosley@sky.com
Title: Re: Elise's Diary
Post by: lynnmarie219 on June 10, 2009, 04:39:54 PM
Oh Craig...I'm so sorry to hear this news about Elise.

And yes....I'm sending a prayer up right now for her and you as well...please know that you both will remain in my thoughts.

Let us know how she is doing when you are able and please try to take of yourself as well during all of this!

Sending lots of hugs to you my friends ((((((((((Craig)))))))))) ((((((((((Elise)))))))))) 
Title: Re: Elise's Diary
Post by: dbab on June 10, 2009, 08:22:37 PM
I'm so sorry Craig.  I'm sending prayers for Elise and to you and your family.
Title: Re: Elise's Diary
Post by: Poochie on June 10, 2009, 09:46:17 PM
Oh Craig, I am so sorry to hear our dear Elise is so very ill.  Please know that I will keep her and you and your family in my thoughts and prayers.

Please do let us know how she gets on.

Hugs and God Bless,
Pooh
Title: Re: Elise's Diary
Post by: wordnerd on June 10, 2009, 11:05:51 PM
Craig, I am just so so sorry to hear this news!  I will be keeping Elise, you, and your family in my thoughts.

*hugs*

-Lauren
Title: Re: Elise's Diary
Post by: Katybarstool on June 11, 2009, 05:27:15 AM
Craig

My prayers and thoughts are with you and Elise.

Kathyx
Title: Re: Elise's Diary
Post by: Linda196 on June 11, 2009, 05:51:55 AM
Oh my Dear Craig, my thoughts and prayers are with you both and the rest of your family. Please keep us informed, when you feel like sharing, and know that we are here for you when you need us.
Title: Re: Elise's Diary
Post by: Scottietottie on June 11, 2009, 09:32:44 AM
Craig - I don't know what to say. I'm really sorry to hear that Elise is so ill. She's proved she's a fighter. I hope she fights her way through this.

Positive thoughts to Elise and to you.

Take care - Scottie
Title: Re: Elise's Diary
Post by: quiger on June 11, 2009, 07:00:30 PM
I'm so sorry to hear that she is so sick. She is a strong girl and I know she will fight hard to get better. Hopefully the doctors have a good plan to ease this.

Please give her our best wishes and know we will all be thinking of you both.

quiger
Title: Re: Elise's Diary
Post by: kimbo on June 11, 2009, 07:32:14 PM
Craig,

Give Elise Our regards , and hugs to you all.

And please keep us posted.  Elise is so special to us all. You are a champion father to her.  :)

I pray for her strength, healing, comfort, and peace to you all,  kimbo
Title: Re: Elise's Diary
Post by: eyeamdry on June 11, 2009, 09:53:09 PM
I have this "little sweetie" and her dad and extended family in my prayers.  Lucy
Title: Re: Elise's Diary
Post by: ktfabian on June 11, 2009, 10:29:41 PM
Oh Craig,

I'm so sorry to hear that Elise is so ill.  I will most definitely be saying a prayer for her and for all of you. 

My very best to you and Elise,
Tracy
Title: Re: Elise's Diary
Post by: harrigan on June 11, 2009, 11:15:10 PM
Thoughts with you both and the rest of your family. xx Ailsa
Title: Re: Elise's Diary
Post by: Chickpea on June 12, 2009, 02:19:12 AM
Thinking of you today and hoping that it's a better day for Elise. 

You must be overwhelmed by what's happening but if you get a chance to let us know how things are going we'd be so grateful.

You're in our thoughts - Chickpea
Title: Re: Elise's Diary
Post by: Bucky on June 15, 2009, 02:35:31 PM
Craig & Elise,

I've been out-of-town and just now getting caught up with news on the forum.  I am so sorry to hear how ill Elise is. 

Sending prayers to all of you and your family and the doctors so they can help our fellow little feet/nose photographer get back on her feet doing the things a littlle 10 yr. old girl does.

Please take care of yourself too Craig, so you can be there for Elise.

Hugs to your family,
Bucky

Title: Re: Elise's Diary
Post by: itssue on June 15, 2009, 02:49:48 PM
Craig and Elise,

Craig, my prayers are with you and the family.  Keep the faith.

Elise, keep being that strong girl, like you've been in the past.  We all love you and pray you'll be out of the hospital and home feeling good real soon. 

God Bless and lots of {{{{{{{{{{{{{{{Hugs}}}}}}}}}}}}}}},

Sue
Title: Re: Elise's Diary
Post by: elise on June 18, 2009, 03:57:18 AM
thank you for all of the replys , i wasnt expecting so much. thank you for all of the supports. when i wasnt very well i forgot some of my memory. when i had a needle for my vein dad knew i Wasnt well cause i usually cry and i didnt i was just sat there not feeling a thing and i am usually paranoid but i waas rolling around with it And things. i am writing from the hospital becAuse i have intwenet connection.

elise xxx
Title: Re: Elise's Diary
Post by: Linda196 on June 18, 2009, 04:12:54 AM
It's so good to hear from you, Elise. Thanks so much for remembering your SjS family and letting us know that you are feeling better...I'm sure we will all let out a big sigh of relief!
Title: Re: Elise's Diary
Post by: Scottietottie on June 18, 2009, 09:09:07 AM
hello Elise  :)    (((((((( hugs )))))))))

How nice to see you here. We were all so worried as you will have seen. You're a good fighter girl!  I hope you feel a lot better soon.

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: wordnerd on June 18, 2009, 11:24:13 AM
Hi Elise!

I'm so glad you are feeling well enough to write to us!  I've been keeping you in my thoughts everyday!  You've been through so much, but you are so strong and I know you will get through this too.  Also yay for internet in the hospital!

Love,
Lauren
Title: Re: Elise's Diary
Post by: Bucky on June 18, 2009, 01:35:13 PM
Hi Elise,

Nice to hear from you.   ;D  I agree, yay for internet connection at the hospital.  :)

Do you have any idea how long you will remain at the hospital?  Hope you get to go home soon.  Like Dorothy in the Wizard of Oz . . . . "there's no place like home!".   :D

Keeping you in my thoughts & prayers.

Take care . . . get well.

Bucky
Title: Re: Elise's Diary
Post by: Poochie on June 18, 2009, 04:07:04 PM
Hi there Little One, so sorry you are having a rough time of it again.  I pray your stay in hospital will be short and you can go home. 

I told PoohBear and Paddy that you were back in hospital and PoohBear picked her paw up as if to wave. :D  So from PoohBear and Paddy, biggggggggggg huggssssss and hopes for a speedy recovery.  ;D

You are such a brave girl and we are all so very proud of you.   :) :-*

Hugs and God Bless,
Pooh
Title: Re: Elise's Diary
Post by: lynnmarie219 on June 18, 2009, 06:05:22 PM
((((((((((((Elise)))))))))))))

I'm so glad that you were able to type us a note to let us know that you're feeling a bit better! I hope you continue to feel a little better each day so you can go home very very soon! 

(http://www.freesmileys.org/emoticons/emoticon-object-080.gif) (http://www.freesmileys.org)
Title: Re: Elise's Diary
Post by: kimbo on June 18, 2009, 08:11:59 PM
Hi Elise,

Thank you sooooooooo much for your reply to us.

I hope your stay in the hospital is as good as it can be. 
Maybe you can make new friends there.
And I certainly hope you are having a speedy recovery, so you can return home.

Like Bucky said.....There really is no place like home.   :)

Please keep us posted, if you feel like it.  :)

Luv, Prayers, and Hugs..... kimbo
Title: Re: Elise's Diary
Post by: elise on June 24, 2009, 04:08:25 AM
thanks everyone, i am having chemotherapy today, but just this one drug, just for today,  then a month again, then again in three months.

just scared of loosing my hair. i have been in hospital for three weeks now, well this is the third week. i need to stop over today to make sure im ok with the drug, it makes  you tired and feel sick.........

i am having hospital school-work given to me. i do it all in the same day so they have to send some more. i also got sent a certificate for " the best work in school".

how has everybody else been going on?

elise xxxxxx
Title: Re: Elise's Diary
Post by: Poochie on June 24, 2009, 09:16:42 AM
Hey there Sweet Little girl. :-*  I hope that chemo makes you feel better and not sick.  If you lose your hair, you will still be beautiful so don't worry.  Besides, maybe you will get a wig and you can get any color you want.  8)

I've always wanted pink, or maybe green hair. :D  You hang in there and those wonderful doctor's and nurses will have you up and out of there in no time.

Say hi to Dad and tell him we are still saying prayers and sending wonderful thoughts your way.  

{{{{{{{{{{Huggles}}}}}}}}}}  The Pooh ;D
Title: Re: Elise's Diary
Post by: wordnerd on June 24, 2009, 09:25:40 AM
Hiya Elise,

I'm so sorry you are still in the hospital.  I've been in the hospital for long periods sometimes too and I know it's not fun at all.

I also just started a chemotherapy drug for my Sjogren's (and brain inflammation).  I don't know if it's the same one (mine is Rituxan), but the good news is I didn't loose my hair!  It did make me feel tired and sick, but nothing too horrible.  I hope it goes even easier for you today!

I am so proud of you doing so well in school despite everything you are going through!  You are an inspiration to me!

Stay strong honey!  I hope the new med has you feeling better in no time!

Love,
Lauren
Title: Re: Elise's Diary
Post by: craigmosley on June 25, 2009, 03:36:28 AM
Hi all...........................

Lauren..........................its nice to know someone else has been through this......and yes...........it is the Sjogrens that caused it all..........

Thanx to you all for your much needed support.

We are going home today...........yaaaaaaaaaaaaaaaaaaaaaaaayyyyyy.

Elise is loads better and giggles every time you say the word "wiggly"...................its better than "hickman line though......lol

Elise has been in the QMC at Nottingham
Title: Re: Elise's Diary
Post by: Poochie on June 25, 2009, 09:34:07 AM
WOOHOOOOOO!!!!!!!
Welcome Home Elise!!!  I am so happy you are home.  I told PoohBear and Paddy you were home and they started jumping around chasing one another up and down the hall. :D  They get happy whenever anyone comes home. ;D 

Take care Little One and I pray you get to have a great summer without anymore of this stuff. 8)

{{{{{{{{{{{{{{{{{{{{{{{{{{Huggles}}}}}}}}}}}}}}}}}}}}}}}}}

Pooh
Title: Re: Elise's Diary
Post by: Bucky on June 25, 2009, 11:17:12 AM
Welcome home Elise!!   ;D

Did those ruby red slippers like Dorothy's work??   ;D

I hope you feel better each day.  Maybe now you can get back to your photography!!   :D  What's your favorite thing to take pictures of now??

Take care and enjoy sleeping in your own bed tonight.   ;D   ;D

Bucky

Title: Re: Elise's Diary
Post by: lynnmarie219 on June 25, 2009, 07:12:03 PM
WELCOME HOME ELISE!!!
Title: Re: Elise's Diary
Post by: elise on June 27, 2009, 10:23:46 AM
thanks everyone.
sometime next week i have to have my dressing changed from my "Wiggly"              >:(

i dont like it, it hurts,  underneath there it shocked me to see a big pipe coming out of my skin with a stitch to hold it in place so it dont move or come out.  i have to have it changed once a week.

It's easy for me to catch infections as well with the treatment im having.

Dads like a nurse to me, he does my temperature (we bought one for home to check my temperature for infection)
he injects me every sunday.   he changes my dressing, he flushes my wiggly at home  ;D
to be honest, id rather him do it than  the nurses, i know he will try not to hurt me.

your dogs seem very clever, jumping when you say things good.
hows everybody else?



Elise xxxxxxxxxx

i love him to bits.
a doctor saud "good boy" to me. im a girl!! so me and dad joke about it saying good boy to me, i say good girl to dad.
No more hospital for a month, YAAAAYYYYYYYYYY!  ;D :D
Title: Re: Elise's Diary
Post by: wordnerd on June 27, 2009, 10:36:05 AM
Yay Elise I'm so glad to hear you are home!

I've had a "wiggly" too.  It is weird to see them sticking out like that!  But I think I preferred having it to being poked for new IVs all the time.

How are you feeling on your new treatment?  I think we might be on the same one, so I'm very curious to hear.

Take care honey bunch!

Love,
Lauren
Title: Re: Elise's Diary
Post by: elise on June 28, 2009, 02:04:52 AM
thanks, :D

i am feeling a bit tired and a bit frustrated because im not allowed many visitors because im proned to infections easily, we cant go nowhere or do anything because i have nurses to come round, doctors and things like that. i have to keep rubbing my hands with disifectent that doctors use that  rub into your hands and kill germs. i asked dad if i could have a bottle for myself (he has loads) and he not let me  :( ??? dad bought an ear thermometer to keep track of my temperature so he knows if i  have an  infection or not. i enjoy playing with it , in peoples ears  ;D

did your wiggly ever feel uncomfortable or feel like its moving, or move? mine feels like that all the time, its frustrating me, its sent me a little bit paranoid of people banging it or touching it and it always lingers  on my mind. but now i am poorly it means i get what i want  ;) :) :D ;D :P


elise xxxx      :-*
Title: Re: Elise's Diary
Post by: Poochie on June 28, 2009, 09:02:14 AM
Hi there kiddo, I sure hope you are feeling better. 

It's no fun being in hospital for so long.  I thought you were going home?  Did something happen? 

I know how you feel with the "wiggley".  I once had to have these stainless steel "stop cocks" in both my arms at the inside of my elbows.  (couldn't bend either arm) This was a long, long time ago before they had the canula's.  I was on a blood thinner for a blood clot and they couldn't stick me every 4 hours with a needle because it took that long to stop bleeding.  So these were placed so the nurses didn't have to use the needle part of the syringe.  They just opened the "stop cock" and screwed the syringe right onto it.  It's great that medical care has come a long way since then. :-\

Take care "Ms Wiggley",  Good job you are doing and that Dad of yours is very special. 

{{{{{{{{{{{{{{Huggles}}}}}}}}}}} The Pooh  ;D
Title: Re: Elise's Diary
Post by: elise on June 28, 2009, 10:42:11 AM
haahaa, i bet that hurt then pooh!!    i am home not in hospital, i was saying when i was in hospital, when i was in hosp they woke me up in the middle of the night to take my observations!!!

so distractiong and annoying, most nurses just do it whilst i am asleep but no  Carley had to wake me up  :o How daree she disturb my beauty sleep!!!

How're you Pooh? And Hows Your Dogs?
Title: Re: Elise's Diary
Post by: wordnerd on June 28, 2009, 10:51:11 AM
Hi sweetie!

Fortunately my wiggly never felt like it was moving, but it was uncomfortable sometimes... felt irritated or itched around it sometimes.

Sorry you can't have many visitors!  I know it can get lonely and boring sometimes... do you have a webcam that you can use to chat with your friends who can't see you in person?  I do that when I'm too sick to see my friends. My friends even kept my company via webcam during my last Rituxan infusion!  (Check with your dad about it first of course.)

I'm so glad you're home where you can get a decent night's sleep!  So hard to get sleep in the hospital sometimes lol  *hugs* 

Love,
Lauren
Title: Re: Elise's Diary
Post by: elise on June 29, 2009, 05:27:00 AM
ok and mine (wiggly feels itchy too. i once chattted to linda ( Linda196 ) on msn. with webcam. it was great meeting someone new.

i have a slight problem.....whenever i run my fingers through my hair, it comes out, sometimes not a lot sometimes in big clumps, everynow and again i see strands of hair on objects that ive touched.

i hope i dont loose all my hair!!   :o
Title: Re: Elise's Diary
Post by: wordnerd on June 29, 2009, 07:47:26 AM
Aww honey I'm so sorry about your hair!  I hope there rest stays in, but if it does fall out I bet you can get an awesome wig (in whatever color you want) until it has time to grow back.  If mine fell out I would get a shockingly pink wig like this one I wear when I dress up as Tonks from Harry Potter :P

*hugs*

-Lauren
Title: Re: Elise's Diary
Post by: Poochie on June 29, 2009, 10:00:07 AM
Aww Sweetie, don't you know "bald is beautiful" and no matter how much hair you have, you are BEAUTIFUL. ;D

And think of all the money Dad will save on shampoo for a while.  It will grow back, honest.  Sometimes it even comes back real curly.

Don't fret about your hair, just get well then you can worry about it.  Please. :-*

Hugs, Love and Giggles,
Pooh
Title: Re: Elise's Diary
Post by: ktfabian on June 29, 2009, 10:34:23 AM
Hi Elise-

So sorry to hear about your hair.  I've had a similar problem with mine, though it's never come out in big clumps.  Mine goes through cycles where the hair will fall out for a couple of months  - I notice it most around my bangs - then it grows back in.  I constantly have little wisps of hair around my face of new hair.

So, when I get my hair cut? I explain to the stylist that I have this problem, and they cut my hair in a way the makes it the not show as much. And as Poochie says, mine grows back curly sometimes, or curly on one side and straight on the other.  In any case, though, my stylist is able to make it look ok.

My doctor did tell me that the hair loss in my case is related to my Sjogren's but I would definitely ask your doctor about it the next time you see him or her.  In the meantime, I would try different hair styles that make the thinner areas less noticeable and hopefully it will cycle back to growing in again. 
Title: Re: Elise's Diary
Post by: craigmosley on June 29, 2009, 10:37:09 AM
thanks pooh. i guess it should be okay, its better than going bald in hospital and everyone staring at you. ill get a wig anyway so im ok. its just a  bit depressing. hows you anyway?

Elise xxx P.S the nurse hasnt phoned up yet - were having a home visit from her/him for teaching dad to flush my wiggly. hes gonna ask her to change the dressing of  it instead of dad doing it even though he's trained, probably because hes nervous cause its his first time. i also have a very sticky plaster on my neck. its see through an i have a cutt {big} that its protecting. dad wants me to take it off - and the nurses, so once he tryed and it was really sticky, dad told me off and said its like having a normal plaster off, it isnt its worse, more painful, its like having a pin in you 67 times! i know its over reacting but it hurts that much. so i try to get the corners off by rubbing them slowly, my arm aches with trying and im scared, it reallly hurts!!!!!

Thanks ktfabian :) its just depressing
elise xx
Title: Re: Elise's Diary
Post by: harrigan on June 29, 2009, 12:44:14 PM
Oh Elise, really feel for you with that plaster!  Can you (or Dad) rub the edges with olive oil?  That always worked for me.  I know how much it bugs me trying to get a plaster off - good luck and really hope you are starting to feel better XX Ailsa
Title: Re: Elise's Diary
Post by: craigmosley on June 29, 2009, 01:23:21 PM
Im not sure weather to touch it or not.....................as far as i can tell..............the more i touch it..........the more chance of infection there is...................i sooooooooooo want to help her to remove it.............i just dont know xxxxx
Title: Re: Elise's Diary
Post by: jonnell on June 29, 2009, 03:43:27 PM
Hi Elsie, First of all let me send hugs and kissess from Jenna and I.  I havent been on the forum for awhile,  Jenna had a very bad flare the last two weeks really high fever, vomiting and very exhausted, nothing like what you have though.  We are both praying for you you are such a trooper and I talked to your dad today I know he loves you a lot and will take good care of you.   I have a sjogrens site on facebook sure like you to put up a post for me your dad knows the site.  This disease is so scary and frustrating and I hope you get to feeling better quickly.  Love  Jonnell and Jenna
Title: Re: Elise's Diary
Post by: elise on June 30, 2009, 02:52:37 AM
jonnell, i, im  so sorry to hear about Jenna, hope she gets better soon!!!!!! 

Today its 10:26 and dad got a phone call that the jnurse is coming today in the morning . so he was gonna ask her to change my dressing as well as flush my wiggly. But i wanted it over with cause im scared. dad got trained to change my plaster for my wiggly. I told him i cant wait any longer,i want you to change it! i felt sick with worry. i also felt scared. so dad got everything ready and slowly peeled off my plaster. i helped him by pressing down my skin whilst he peeled because it was that sticky.most of it had already came off so it needed changing anyway. when the plaster came off, he asked me to hold a ttiny bit of the corner, so i did. i saw the little tiny dot of spaghetti bolognase sauce on it so i laughed. he began peelin-g back the back of the huge square plaster and stuck  a side onto a strip of skin near my wiggly. then he pulled back the other back-bit of the plaster and stuck it past my wiggly so the cushionn bit in the midle of the plaster was covering my two wiggly pipes with a stitch covering it so it not fall out or if anyone yanks it it'll protect it a bit. once this girls brother yanked her wiggly and she was crying because it hurt her. the nurse came and checked her wiggly and said "thats fine" im like "wow" because he tugged hard and it was still in place. im now glad i have a wiggly and have started using my arm more, the side of the the wiggly, i stiffen my arm up and not use it much because  im scared of my wiggly. i have started  using it now, i have trouble lifting it though, i can put it out to the side, so thats a start.

i'd better go now, ive done too much writing, take care and P.S how is everybody?


Elise xx
Title: Re: Elise's Diary
Post by: lynnmarie219 on June 30, 2009, 04:42:09 AM
Elise,

Its so nice to hear from you again...I'm glad that you are home and that dad is helping you with your wiggly....you are both very brave!

Sending lots of hugs and love to you and your family....keep being strong!

(http://www.freesmileys.org/smileys/smiley-signs055.gif) (http://www.freesmileys.org/smileys.php)
Title: Re: Elise's Diary
Post by: craigmosley on June 30, 2009, 01:07:49 PM
thanks lynnmarie,
nice to hear from you again, i have just been out in the garden and had meted chocolate with raspberries. dad said i wasnt allowed any so i went on and on and on so he melted me a FULL BAR of Galaxy!  :o ;D

I then decided to help him fish out some plant leaves that had come off  this plant ( they was thousands and tiny and all over the place) i got a net and fished them out, dad wants me not to move thee lillypads or put any water on top of thembut the leaves are right near the corners of the lillypads and on top! dad soon gave up but i carried on. why do i have to do all the dirty work???  >:( :-\ ???

Tommorrow we are going out for a meal at Fox & Crown. It is for fathers day as i didnt get dad a present but i didnt havee time, i was attatched tp a drip a lot in hospital. Theres an offer going on there. Buy 2 meals get the cheapest free. One meal is usually ?7.99.I''m Paying, i have ?20.00 is that enough?

Oh by the way, the nurse came, flushed it, she did say something that she needed bloods but didnt take any.  ???
She wouldnt stop talking non-stop.   ::)

anyway, better go, trying to be quiet and hide cause its bedtime and the keys from the keyboard  are making a sound.

Hugs, Take Care And Buhbi.




Elise xzxxxxxxx
Title: Re: Elise's Diary
Post by: elise on July 01, 2009, 06:07:23 AM
sorry im on dads computer and when i come onto this sjogrens forum it automatically signs in as dad and i didnt realiise, i just sent a post without llooking, take care. today i went to take dad out for a meal. you ought to have saw how big MY meal was, it was a big trayful! i had loads of chips with 2 big cheeseburgers and 6 onion rings with beans and coleslaw! wow!
dads was tiny, he had steak and ale pie with a little bit of chips, gravy and garden chips. lmao. for pudding i had a scoop of ice cream with baileys in the same cup. yummy  :D ;D I have now started walking up the stairs and walk around the garden, i did  it once yesterday, need to do two today but instead i did walk 4 times  around the garden, i feel much stronger but i dont know whats enough for me to do and whats too much walking, its not simple. its guess work all of the time.


Take Care,

Elise xxx
Title: Re: Elise's Diary
Post by: jonnell on July 01, 2009, 09:40:04 AM
Elsie,  You are  a very brave little girl,  I can only hope Jenna will be half as brave as you.  The heat is really bothering her this year, but she has a swimming pool shes like a fish.  Your dad is also very brave.  I hope you get to feeling better real quick,  I know your dad takes good care of you and you of him.  We are all praying for you,  I got a prayer group going for you and your dad on my sjogrens site on facebook.  Enjoy your day with your dad,  lots of hugs and kissess from Jenna and I
Title: Re: Elise's Diary
Post by: Poochie on July 01, 2009, 03:40:17 PM
Hello Lovely Little One, you are such a brave girl. ;D  I too detest those plasters, but I have found when I need to remove a large one, (like the one they put on my leg after my catherization), if I lay a warm wet washcloth on it for a while, it comes off much easier.  Must be the warmth that loosens the sticky. ;D

Take care and don't overdo the walking, although I know you must walk to gain your strength.  I am so happy to know you are home and you and your brave Dad are working so well together.   :D

Hugs, Love and God Bless,
Pooh
Title: Re: Elise's Diary
Post by: elise on July 02, 2009, 01:32:48 AM
thanks you lot.

BUT tomorrow i have to go to school for a meeting about my wigglys and how they work to show miss Carter, my school Teaching assistant.
 Liz me and mum and dad will be there too .
 thats at 12:30AM.

Then we will go home and have some lunch.
THEN  we will go to Kingsmill Hospital To see Dr Helen Venning And Jane Ellis About My JDM - Juviniele Dermato Myositis.
And THEN we will go on holiday for the weekend. im going to skegness but i will be taking my laptop so i'll contact you iif i get internet connection.
im going to try to bragg dad for a Mcdonalds Today.
Title: Re: Elise's Diary
Post by: irish on July 02, 2009, 10:21:00 PM
elise, I haven't been doing as much on the computer lately and just took the time to read your posting for the past month. My goodness but you have been one sick girl---so sorry to hear what a rough time you have had. It also sounds like you have had some good care from the doctors and nurses though. Even though they do wake you up during the night and stick you with needles.

Unfortunately we have to get stuck with the needles in order to get better sometimes. How long do you have to keep "wiggly" in??? Are you getting antibiotics for the pancreatitis that you had??? Somehow I missed out on that part. Hopefully you will get wiggly out very soon. I will continue to pray for your recovery. Good luck. Hope you dad is getting some rest now. Irish ;D
Title: Re: Elise's Diary
Post by: lynnmarie219 on July 03, 2009, 08:26:33 AM
Elise,

WOW...it sounds like you had a great meal with your dad for your Fathers Day celebration and I'm sure he appreciated it so much...it doesn't matter what day you celebrate things on...its the thought and love that you put into it that counts!


So glad to hear about your walks around the garden. It's good to walk but remember to listen to you body so you don't overdo it! Have you ever thought of taking pictures in the garden? Taking close ups of some of the flowers might be very pretty! (http://www.freesmileys.org/emoticons/emoticon-object-027.gif) (http://www.freesmileys.org/emoticons.php)
Title: Re: Elise's Diary
Post by: genko_b on July 03, 2009, 09:51:23 PM
Dear Elise:

It's so good to hear you are out of the hospital and home again. I have been gone from Sjogren's World for a while but am getting back now and just read your dairy to catch up. You and your Dad have had quite a time of it, haven't you? Have a really good summer vacation - in spite of everything you have done so well in school. We are all so proud of you!

Take care and let us know how you are doing.

Genko
Title: Re: Elise's Diary
Post by: elise on July 04, 2009, 02:32:55 AM
okay, yesterday we went to skegness, i fell asleep all the wayy there! and today to get interrnet connection dad bought me a dongle so i can get internet connection anywhere i go. my hair is staying thin at the moment , not incredibly thin , its not noticeable, but I can tell that somes came out. Today we are going to have a steady walk to country meadows, the shops there. i am prone to infection so i can't touch anything, just point and ii cant go into the amusements either, you dont know what kids have been doing and then touching the arcade games. I don't mind, im not very fond of arcades at the moment. im typing from inside my grandads caravan, he lets us come and stop whenever we want. I have started getting shakes  of my hands, i am on steroid, could it be possible of them making me have shakes or could it be the sjogrens?

thanks, elise
xx
Title: Re: Elise's Diary
Post by: elise on July 04, 2009, 02:39:09 AM
I am not having any tablets for my pancreatic problems. i am getting better with my organs now because i am taking this tablet called creon 1000, i have it before food, if its really fattening then i have two. It works, i feel a lot better with my tummy now i'm on creon. I will have to keep my central line/hickmanline/wiggly for 2 years, i am having two years of chemotherapy.

thanks for yor interest, elise x
Title: Re: Elise's Diary
Post by: kimbo on July 04, 2009, 06:56:21 AM
Elise,

I hope you had a good time with your family.

I have a mild tremor of my hands also. I think I always have, so I don't think its sjogrens. If I take an Excedrin, it makes it worse because of the caffeine in it. I try to stay away from caffeine.

But I probably make up for it in my chocolate intake!

You know Hannah Montana wears a wig. So if your hair annoys you to much, All you have to do is get a Hannah Montana wig.   :)  Or...... Her friend that wears that little pink wig, with the wedge cut.   :) There are all kinds of possibilities when you think about it.  :o

I am enjoying my 3 grandkids this weekend. Its our 4th of July holiday in the USA. Independence Day. My youngest 6 month old grandson 24 pounds worth of joy he gifted me with about 3lbs of nasty diaper a few minutes ago. UUUUUGH!  The little cuttie pie.

You are in my prayers. And I am so glad you are out of the hospital and enjoying your family. I am sure you bring great joy to your family.

I am going to ask my husband if I can have one of those dongles for my lap top. Your Dad looks after you very well.

Thank You for blessing us all here with your adventures.

Blessings and Prayers....Hugs and XXXXXXXXXXX, kimbo
Title: Re: Elise's Diary
Post by: elise on July 05, 2009, 12:53:24 PM
hmm, a pink wig..... interesting!!. Me and my dad with my mum went to Skegness. we went to some shops andi bought a lot and still have ?15.00 left!!!! i did have ?25. here is a list i can't resist to make to tell you what i have brought.

1) Chinease Top
2) 2 Bracelets, one with 2 lovehearts and one with dolphins at the front.
3)dad brought me a ring, its kind of him, im always gonna wear it and when it gets too small  im gonna buy a chain to put round my neck with the ring on it.
4)hair dye, pink , blue and yellow (a;ll bright)
5)dad a rock saying i love you on it
6) dad a certificate
7)glitter art
8)Colour in , one of those cardboard thingys where you get a pack of felt tips to colour it in attached to it.
9) how to be a millionare game book in 2006, there was a choice of 2005 or 2006 so we chose 2006. i asked dad some XD
10)A cap that sunglasses are attached to and ypu have to pull this slidything down and they come out. its in pink.
11)lots of sweets: lime hard boiled  sweets.lollypops, pink  shrimps,fruit flavoured hard boiled sweets
thats all the list for now lmao. i have co,me back home cause tommorrow we dontt know if the nurse is coming. shes coming sometime in the week, and when she does phone up to come round to teach dad to flush my line then we will wait for my medication and go to skeggie afterwards the treatment, dad said give it a few days though. before the nurse comes, he changes my dressing of my line (OUCH!) and waits for the nurse. i trust dad more tha the nurse.

take care,     
elise xxxxx

Title: Re: Elise's Diary
Post by: lynnmarie219 on July 05, 2009, 12:57:52 PM
Wow...you are a good shopper...you bought a lot of nice things and still have money left over!   :o That's great!


I'm so glad to hear that you had such a nice time.....keep enjoying yourself...you deserve it Elise!!

Hugs to you and your family....
Title: Re: Elise's Diary
Post by: elise on July 06, 2009, 02:18:59 AM
thanks lynnmarie,


Lauren, thanks so much for your card, its lovely!, i like it how you did the letters and the pattern/design of the card, its wonderful!

whats everyone been up to recently, are you okay?

elise xx
Title: Re: Elise's Diary
Post by: ErinG on July 06, 2009, 09:41:42 AM
Quote from: elise on July 04, 2009, 02:32:55 AM
I have started getting shakes  of my hands, i am on steroid, could it be possible of them making me have shakes or could it be the sjogrens?

Hi Elise,

I am on steroids too (prednisone), and I have had the shakes since first starting them.  It is the worst in my hands, but I've noticed when I'm really still that I have it all over my body.

Erin
Title: Re: Elise's Diary
Post by: Scottietottie on July 06, 2009, 12:15:37 PM
Hi Elise  :)

My oldest son (he's grown up now) recently has had to take steroids and he says they make him feel all 'jittery'. I think that includes hand trembling. He doesn't like the feeling but will put up with it because it will make the pain he was in go.

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: irish on July 06, 2009, 05:46:48 PM
Elise, Boy, you sure got a lead of stuff when shopping. I bet you had a biggg sack full. Glad to hear that you had a good day. It is so grand that you are home now and the nurse comes to you. I would bet that you still have to do your homework. Do you take the summer off or just keep at the homework all year round?

I have taken the prednisone also and it can make you tremble inside and hands shake. Some times it isn't bad and other days it is moreso. I don't know why it varies sos much. Maybe it depends on how much a person drinks???? I know that when I take it by mouth I have to take it with food.

Glad to hear that you tummy is doing better with the new medicine. You and your dad sure keep on the go don't you!!! TAke care now and take good care of dad also. Irish ;D
Title: Re: Elise's Diary
Post by: jonnell on July 07, 2009, 06:57:53 AM
Hi Elsie, hope you are doing good and u r taking good care of your dad.  Hope your enjoying your summer.  Hugs and Kissess  Jonnell and Jenna
Title: Re: Elise's Diary
Post by: elise on July 09, 2009, 01:47:30 AM
thanks everyone, today i am waiting for the nurse to come home and then we are going somewhere.......i don't know where  ??? but dad is gonna tell her that he wants to get trained to flush my wiggly so we are not waiting every week at home for the nurse to come and flush it, we can just whizz of to Skegness for a month or two. For some reason he's planning on living at skegness, right near the beach, its a good idea , but what about my Special best friend Ellie?  ??? :-\

Erin, that's exactly like me, i'm on Prednisolone and as soon as i started taking them i get shakes, today there not as bad though. Hows your shakes going on?

Scottie, I don't get in pain, just sometimes with my wiggly, but it don't usually work as a painkiller for me, i have to have some codine, i can't have paracetamol because of the medicine im taking at hospital (the chemotherapy). The nurse said that it'd not worth taking Paracetamol anyway, all it does is lower your temperature when your hot.

Irish, we do take the summer off, ( 6 weeks) but we have a piece of homework thats kinda like 10 pages of things to do , like a little booklet of things to do, to hand in after the holidays.

Jonnell, yes thanks we are enjoying it, I am just sick of being stuck in the house , i feel like a prisoner.



My sister Emma is moving back into the house, shes 16, she got kicked out   cause we h ad family problems, bad arguing, hitting etc. So emma got to come back to our house to live cause she seems a little better now, she comes and visits me but i get upset when she leaves, i couldn't stop howling yesterday, when she leaves we do this thing  in the street where she shouts bye and i shout bye at the doorstep and we carry on until our voice fades off , i enjoy that  :)
Title: Re: Elise's Diary
Post by: elise on July 10, 2009, 04:27:10 AM
today raymond and jenny have come to visit me. they gave me a dress, sweets & a bath fizzer. :)

nothing new to report now,


elise
Title: Re: Elise's Diary
Post by: jonnell on July 10, 2009, 08:52:07 AM
Hi Elsie hope you are doing good, been thinking about you.  I know all about being stuck in the house,  We try to keep Jenna in as much as possible she gets so sick with the heat and it is so hot and humid here in Jersey.  Hope you are having fun with your dad and family.   Hugs and Kissess   Jonnell and Jenna
Title: Re: Elise's Diary
Post by: elise on July 11, 2009, 06:08:42 AM
thanks Jonnell
Title: Re: Elise's Diary
Post by: kimbo on July 11, 2009, 07:58:05 PM
Hi Elise,

What is Skegness?

Emma sounds like a fun sister.
She is at a tough age, at 16. Life offers so much stuff and at 16 , its hard to sift through all the troubles the world has to offer. Parents have lived it and they really do have advise on cautions.

Glad your able to stand at the door and shout. I have a picture of that in my mind.  :D

blessings kimbo
Title: Re: Elise's Diary
Post by: wordnerd on July 11, 2009, 07:59:31 PM
Elise - I forgot to tell you how glad i am you loved the card!  Hang in there sweetie!  I'm thinking of you :)

<3 Lauren
Title: Re: Elise's Diary
Post by: elise on July 13, 2009, 09:13:20 AM
thankyou you two,

skegness is a holiday place.
today i had my dressing changed for my wiggly, dad did it and had to curl this bit of pipe up again if anyone tugged it, the pipe circle will come loose, not the wiggly itself. he stuck it down and i felt it a little uncomferatable this time. I have also changed my wiggly bag.

There was this plaster stuck to my neck and it is really sticky, i have a big scar underneath, i have always been scared of ripping that off, so i keep soaking it, most of it come off and i was crying my eyes out , dad offered to do it with the tweezers and i said "no". but eventually i got fed up of going slow and asked dad to come and rip it off, he did and i was gripping my legs everytime it hurt.

I looked in the mirror and looked at my neck, there was this pipe sticking out underneath my skin, i was so scared and upset because of the state they've made me, i shown dad and he said " if they did it any deeper then your lung could of collapsed again".  but im still scared, i have been all my life.

I have the hospital tommorrow. we might go in the car or take the taxi , dad and me want to take the taxi but mum wants the car. 
we got a phone call, we have to go to queens medical centre, the nurse wasnt coming because they may as well do it at the hospital, so we've been waiting all day for nothing.   

we dont know why we are going to Queens medical.



Elise x
Title: Re: Elise's Diary
Post by: elise on July 17, 2009, 11:36:18 AM
well last night i was running around the garden playing bat and ball and football and it was great to be active like i used to be, it was so funny because dad threw a tennis ball over the roof and it landed on the front so we ran to the front to see it near the car.. it was sooooo funny! and throwing pebbles at mum whilst she was watering the plants!!  tonight my mum is going out 8:15pm till 12:00am.  Me and dad are gonna watch the whole collection of austin powers, we have crisps and sweets while we eat them! theres this big poufe, a bit like a bed and dad is gonna bring it down whilst mum is out, mum says that we cant have it down but dads gonna do it whilst mom is gone XD. were sneaky like that as you can work out lol.  :P

also, theres swine flu going about my school , about 2-8 causes now so i cant go, there is 2 cases at my big sisters school and i went to the doctors and she said not to worry, at the end of the day, we think that everybodys going to get it , so get on with your life......... so should we be worrying about swine flu or not?

elise x
Title: Re: Elise's Diary
Post by: kimbo on July 17, 2009, 08:58:51 PM
Hey Elise,

You caused me to think of a game we played when I was young.  Called annie over. Kids would split between the back yard of a house and the front yard. With a big ball that you could throw over the top of the house after you shouted ANNIE OVER. then the other side would return it when they shouted ANNIE OVER. Simple child hood memory fun.  :D

I am so glad you had such fun in your yard.

Yeah...... I think I have figured out that you and your Daddy team up in your adventures.   ;)

Swine flue  :-\  These things come and go. But it is wise to be cautious. Best not to worry to much. I am sorry to hear that it is in your schools. So I am sure your mom and dad are being watchful of you.

XXOO  kimbo

Title: Re: Elise's Diary
Post by: elise on July 18, 2009, 08:06:37 AM
thanks Kimbo, ill see if dad will let me play annie over with him  ;D
Title: Re: Elise's Diary
Post by: Poochie on July 18, 2009, 10:23:03 AM
Hey there Little One, it sounds like you and your Dad are having fun.  Just please be careful and don't hurt yourself.

Kimbo, we use to play the same game, Annie Over.  Only we had to give up a team member to the other side if we didn't get the ball over the roof.  The team with the most members usually won.   :D

Take care Elise, I'm so happy that you feeling better.  You really had me worried a while back when you were in hospital.  I hope you have a great summer.

Hugs, Love and Smoochies,
Pooh  XXXXOOOO ;D
Title: Re: Elise's Diary
Post by: lynnmarie219 on July 18, 2009, 11:20:25 AM
Hi Elise!

So glad to hear that you are able to get outside and play in the fresh air and that you are keeping dad hopping and active as well!!(http://www.freesmileys.org/smileys/smiley-chores001.gif) (http://www.freesmileys.org/smileys.php)

I can definitely see that you and dad enjoy the sneaking around behind moms back when you can....that is too funny....but I'll bet she knows you two better than you think....(http://www.freesmileys.org/smileys/smiley-laughing012.gif) (http://www.freesmileys.org/smileys.php).

Take care my little friend.....enjoy your time off of school!

Title: Re: Elise's Diary
Post by: elise on July 19, 2009, 08:29:41 AM
thanks, thursday we have to go to queens medical centre at 9:00 but setting off at 6:30.
i am going to have some cyclophoxamide and some methyl prednisolone......
prednisolone is 1hour
cyclophoxphomide is 6 hours.

dad is gonna cchange my plaster then to show the nurses to see if its okay.

hows everyone?

elise
Title: Re: Elise's Diary
Post by: kimbo on July 19, 2009, 01:52:27 PM
Wow Elise,

You are a very courageous young lady. I hope you can play video games or something while you endure your treatments.

And Pooh, you helped me remember with Annie over, because we also had to send a team mate to the other side of the house if the ball failed to make it over.


hugs kimbo
Title: Re: Elise's Diary
Post by: jonnell on July 22, 2009, 06:54:38 AM
Hi Elsie been thinking about you, hope you are okay and in good spirits.  Hugs and Kissess from Jenna and me.
Title: Re: Elise's Diary
Post by: elise on July 24, 2009, 02:18:35 AM
thanks, today i am at hospital. i am writing whilst im having medication through a drip.
i am having methyl pred.. 1 hour
then cyclophoxphomade.. 12 hours but its usually six  ??? :-\
i had to get up at half 5 , im sooooooooooo  tired

elise x
Title: Re: Elise's Diary
Post by: Scottietottie on July 24, 2009, 06:38:27 AM
Awwwww

Can you nap while the treatment is going on? Sounds like you could do with some sleep. I hope it all goes smoothly.

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: lynnmarie219 on July 26, 2009, 01:57:07 PM
Hi Elise,

  :o Wow, that's a long time for a treatment....how did it go for you?

I hope you are feeling ok today....just wanted to check in and say hi to you. You are such an inspiration to so many of us!

Sending lots of gentle hugs to you my little friend....
Title: Re: Elise's Diary
Post by: Poochie on July 26, 2009, 10:04:15 PM
Hi there Elise,
I hope you finally got some sleep and all the "drips" are over with. :D  How did Dad do with his plaster changing?  Did he pass?  ;D

Take care Little One and I hope you are feeling much better.

Hugs, Love and Smoochies,

Pooh  XXXXXOOOOO
Title: Re: Elise's Diary
Post by: kimbo on July 27, 2009, 04:46:00 PM
 ;D  Smoochies from Poochie,

Elise you are blessed, you are loved by many. :)

And I think Pooh should sign off on all her posts  "smoochies from poochie".... just a thought  :)

hugs from kimbo, can't think of anything to rhyme with mine  :)
Title: Re: Elise's Diary
Post by: SassieCat on July 27, 2009, 11:40:47 PM
Hi Elsie,

This is the first time that I have written to you.  The last time I read the posts and today I see that  you went shopping and are a wise spender.  If I have $25 I think I would spend it all.  It's sweet of you to buy the gifts to give with your money.  You are on special kind hearted little girl.

Ah, you were outside playing ball too.  How wonderful is that?  Good thing the ball didn't fly through a window, I just hate it when that happened. 

My youngest son loves to watch the Austin Powers movies.  He will repeat the part that make him laugh the most.  I cannot help buy to laugh at watching him laugh so hard.  During the winter, we would have Austin Power days and sit together and laugh. 

I am so happy to hear that you are not in the hospital anymore and it made me smile that you call your new friend "wiggly".   :D 

Take care little one, I'll keep you in my thoughts.

Sassie Cat
Title: Re: Elise's Diary
Post by: elise on December 31, 2009, 01:00:03 PM
Thanks Guys :) Yeah dad can't stop laughing at austin powers... well where do i start? My Chemo that i were having once monthly by 12 hours. Its Stopped! and my injections from dad have also stopped! im on a tablet instead! And also my wigglys will be coming out... i couldnt ask for a better christmas present!! anyway, how was christmas for you all?? and have a happy new year too:)

New year, new start :)

Elise x
Title: Re: Elise's Diary
Post by: Bucky on December 31, 2009, 02:01:35 PM
Hi Elise . . it's been a very long time since we've heard from you.  Glad to hear that your shots have stopped and you are down to taking a pill now.  Yay!!  Hard to believe today is the last day of December and 2009!!   :o

Wishing you a healthier New Year filled with lots and lots of good times and many, many blessings.

Happy New Year Elise!!   ;D

Bucky
Title: Re: Elise's Diary
Post by: elise on December 31, 2009, 02:44:36 PM
 :D I can say the same for youu too. sorry about not hearing from me all this time :) And i know! 2010. im gobsmacked, this year feels only like yesterday!
Title: Re: Elise's Diary
Post by: SassieCat on December 31, 2009, 07:56:46 PM
Elise,
I could not have imagined a more wonderful way to end a year and start a new one.  Yes, that is terrific news and you've been so brave through it all. 

May you have a blessed and WONDERFUL year ahead of you!  ;) 
Honeygirl you deserve it.   ;D

Marianna
Title: Re: Elise's Diary
Post by: Shari on December 31, 2009, 11:27:32 PM
You all have been so wonderful in our education here and allowing us to share in the ups and downs of life with Sjobrens with your daughter.  Allto I have not kept up with the trials and joys i have thought of your entire family. My grandson , two years old and exhibits some troubling signs that i have yet to express to his parents completely.  I want to ask if there were any signs of irregular heartbeat as this is one of the things I have noticed along with dry eye, skin, and mouth...and in generall ill health...thank you....love
Title: Re: Elise's Diary
Post by: elise on January 01, 2010, 04:09:10 AM
thanks guys. :) not long until im having it out. Just hope that i don't get unwell again  ???

Quote from: Shari on December 31, 2009, 11:27:32 PM
You all have been so wonderful in our education here and allowing us to share in the ups and downs of life with Sjobrens with your daughter.  Allto I have not kept up with the trials and joys i have thought of your entire family. My grandson , two years old and exhibits some troubling signs that i have yet to express to his parents completely.  I want to ask if there were any signs of irregular heartbeat as this is one of the things I have noticed along with dry eye, skin, and mouth...and in generall ill health...thank you....love
shari, ill get my dad to post an answer for that :) it will be later on today.....

he's cooking a new years eve dinner for us. he always cooks for us :)
Title: Re: Elise's Diary
Post by: Shari on January 01, 2010, 06:07:47 AM
So what did he cook??!!  We had lobsters last night.  Happy New year!!
Title: Re: Elise's Diary
Post by: elise on January 02, 2010, 02:01:34 AM
he cooked:
Mashpotato, Gravy, Broccoli, Chicken & Brussel sprouts hehe.
Title: Re: Elise's Diary
Post by: Shari on January 02, 2010, 05:43:17 AM
Well, that sounds VERY good!!!  I have a Grandaughter who is 13.  Her name is Sadie.  She does not care for brussel sprouts but when she was 6 we told her (in Joking) that we would pay her a quarter for every one she ate.  Well, she ate 8 of them!!  Now she eats a couple at a time.  I love them!
It is snowing here and has been since thursday.  The weather report says it will snow through till sunday.  The snow is getting deeper and deeper.  I put out grain for the deer and bread for the birds to snack on during the storms.
Hope you are having a good day!!!!   Shari xx
Title: Re: Elise's Diary
Post by: craigmosley on January 02, 2010, 06:06:24 AM
I love the sound of feeding the deer.......... :)
Today is hot roast pork cobs with stuffing and apple sauce............lol..............your all invited. :D
Title: Re: Elise's Diary
Post by: Shari on January 02, 2010, 06:25:24 AM
Oh my!!  I will be there!!  I love applesause with pork!!  This is the first year that I have put out grain for the deer and it is taking them a bit to not be afraid of coming to close to the house to get to the feeder which is actually a bird bath on a pedistal.  I have to keep going out to clear away the snow.  Each morning i look out the window and see so many tracks from them in the snow.  There must be at least 6 that come visiting in the night.

Someone told me that after awhile they will come right to the window if the feeder is empty wondering where the frain is..I'll try to keep it full tho.  When they start coming in the day light I will try to get a picture to send you.

A number of years ago a deer came into the yard and went right up to my orange cat and touched noses!!  I was amazed and felt lucky to be looking out of the window at the right time.  I do have a photo of that somewhere but it is not very good as it was a distance from the house to them.  If I come across it i will share it with you!!

I still have my christmas tree up..maybe time to take it down today...I will set it outside in the snowbank..maybe put peices of bread on the branches for the birds..they will have shelter while they eat!!
What are you going to to today??

Title: Re: Elise's Diary
Post by: Shari on January 02, 2010, 12:29:21 PM
I took the decorations off the Christmas tree and put it outside in a snowbank...I put slices of bread and cranberries on the branches.  I hope the birds enjoy!!
Title: Re: Elise's Diary
Post by: genko_b on January 02, 2010, 01:07:22 PM
So good to hear from you and your dad at the new year! I certainly hope you continue to get stronger.

Let's wish for a healthier happier year for everyone!

Genko
Title: Re: Elise's Diary
Post by: lynnmarie219 on January 02, 2010, 01:21:01 PM
Elise and Craig,

So good to hear from you both!

Elise...It is especially good news to hear that your treatments and shots are done and you are just taking a pill now...is your wiggly out too now? I hope so.....

Wishing you and your family a Happy and Healthy New Year!
Title: Re: Elise's Diary
Post by: craigmosley on January 02, 2010, 02:11:07 PM
wiggly comes out at the end of January.........YIPEEEEEEEEEEEEEEEEEEEEEEEE
Title: Re: Elise's Diary
Post by: lynnmarie219 on January 02, 2010, 02:26:02 PM
(http://www.freesmileys.org/smileys/smiley-happy105.gif) (http://www.freesmileys.org/smileys.php)Wooooooooooooo Hooooooooooooooooo!!!!!!!!!!!!!!!  (http://www.freesmileys.org/smileys/smiley-happy105.gif) (http://www.freesmileys.org/smileys.php)
Title: Re: Elise's Diary
Post by: SassieCat on January 02, 2010, 03:15:21 PM
 :o :o :o  We'll all do the WIGGLY-SQUIGGLY dance with you!!!

The only extra mouth I feed is the stray tom cat I call Rosco, been feeding him for 2 years now! 
Title: Re: Elise's Diary
Post by: elise on January 03, 2010, 08:44:14 AM
Quote from: craigmosley on January 02, 2010, 02:11:07 PM
wiggly comes out at the end of January.........YIPEEEEEEEEEEEEEEEEEEEEEEEE

Yep :D Im worried about it coming out though incase Anything Happens.
Title: Re: Elise's Diary
Post by: Poochie on January 03, 2010, 09:30:14 AM
Hello Elise our Little Miss Courageous, ;D I've missed you.  I am so happy to hear you are doing so well and the wiggly is coming out. (or is out by now)

We had a great holiday here although it was a bit cold and messy.  Snow, sleet, rain, then more snow. :-\  But when we all got together it was wonderful.

I finally got to see and hold my 9th great grandchild on the day after Christmas.  He is getting so big.  He's 9 mos. old now and smiles just about all the time. 

Take care, stay well and say Hi! to your Dad.  Happy New Year!

Hugs, love and smoochies,  :D

Pooh  ;D
Title: Re: Elise's Diary
Post by: elise on January 06, 2010, 06:07:04 AM
Thanks  Poochie :D

Yesterday, me and dad went sledging to the shop and back. Guess who were in the sledge? Me. It was very fun! i want to do it again  :)

School was closed due to heavy snow. YIPPEEEE!!!!

Hopefully, school will be closed all week and i will be able to go sledging tomorrow again :D


From

e l i s e xxxxxx
Title: Re: Elise's Diary
Post by: craigmosley on January 06, 2010, 06:15:46 AM
When is it my turn on the sledge ??????? ???
Title: Re: Elise's Diary
Post by: elise on January 06, 2010, 06:19:10 AM
Quote from: craigmosley on January 06, 2010, 06:15:46 AM
When is it my turn on the sledge ??????? ???



Now if you want or tomorrow  :D
Title: Re: Elise's Diary
Post by: SassieCat on January 06, 2010, 07:10:24 PM
 :D :D :D  Hey you two are having too much fun!!!!   :D :D :D :D   Can there be a thing as 'too much' fun!!!  Glad to hear you're having a good time!
Title: Re: Elise's Diary
Post by: elise on January 08, 2010, 03:24:22 AM
Thanks :)

Yesterday was funny because i kept falling over off the sledge and i got freezing lol.

Dad sat in it with me and we were pushing it :D

It were really fun.

Elisex
Title: Re: Elise's Diary
Post by: lynnmarie219 on January 09, 2010, 11:14:39 AM
Elise,

So good to hear that you and dad are having so much fun....and no Sassie...there is no such thing as "too much fun".  ;)
Title: Re: Elise's Diary
Post by: elise on January 18, 2010, 09:10:58 AM
i have really bad aching in  my back and legs, it hurts everytime i standup. i think its because the seats too low down. im scared because dads taking  me to the hos[ital tomorrow morning. What if i have to stay in? im really scared  :'( just as i thought things were right again.
Title: Re: Elise's Diary
Post by: Poochie on January 18, 2010, 10:12:51 AM
Oh Little One, don't be afraid.  I know what you have been through and I know you are strong. 

I am so happy to hear you and your Dad had so much fun sledging.  Try to think of all that fun and don't dwell on the bad stuff.  :D

It could be you are feeling the aches and pains so many of us feel after having these outings.  I know how the cold makes me ache.  ;)

Good luck and think happy thoughts.  Remember that we are all praying for you as we always do.  We love you Elise and think only happy, good thoughts for you.  :-*

Hugs, Love and Smoochies,
Pooh  ;D
Title: Re: Elise's Diary
Post by: genko_b on January 18, 2010, 05:06:47 PM
We will all be thinking of you and hoping it is nothing much. Just let us know what you find out.

Genko
Title: Re: Elise's Diary
Post by: lynnmarie219 on January 18, 2010, 07:15:50 PM
You are always in our thoughts Elise...hang in there...you are very brave!
Title: Re: Elise's Diary
Post by: SassieCat on January 18, 2010, 11:33:45 PM
I know you are so brave in spite of all that goes on.  Try to not be afraid, when I was little my legs hurt too from growing pains.  I will pray that it is something so simple as that for you!  Keep us posted and let us know how you are.  We all love you sooooo much!   :o
Title: Re: Elise's Diary
Post by: elise on January 19, 2010, 07:16:50 AM
Thanks , well it's tomorrow so ill keep in touch with what it is tomorrow.  Im a bit better today, just really tired because i only had 3 hours sleep last night.
Title: Re: Elise's Diary
Post by: Poochie on January 19, 2010, 12:19:53 PM
Ooooomph!!........BIG HUG, but gentle. :)

Good luck tomorrow Little One.

Hugs, Love and Smoochies, Pooh
Title: Re: Elise's Diary
Post by: elise on January 20, 2010, 11:50:52 AM
Been to the hospital.......... where do i start?

Im having a flare up again. im weak.

The new tablet im on that replaced methetrexate (injection by dad) isnt working properly . It only works for my sjogrens and not my JDM. so my muscles and bones are no good.  I will have to have cyclophosphamide monthly over 12 hours again. the next one is tuesday by the sounds of it.... More injections by dad weekly again.  .... just as i thought things were going right again.  :(  i not expect that next time..
Title: Re: Elise's Diary
Post by: Katybarstool on January 20, 2010, 01:17:56 PM
Elise, sweetheart

I'm sorry to hear you are back on the injections, but if they make you feel better, they will be worth it.

Thinking about you.

Kathyx
Title: Re: Elise's Diary
Post by: craigmosley on January 20, 2010, 04:56:22 PM
Elise is realy down and upset.............so if you can offer any support...........im sure she would love to hear from you all xxxx

Dad can only do sooooooo much.......... :'(.......wish i could do more  :'( :'(
Title: Re: Elise's Diary
Post by: SassieCat on January 20, 2010, 05:26:17 PM
Oh Elise, after all you went through last year(s), having injections should be a piece of cake for you.  I know that the flare up's are annoying and they drain so much out of a person, but keep your beautiful little chin up, they will let up.  Try to think of the "FUN" stuff you will be doing again. 

Take care HoneyGirl and know that you are in my thoughts constantly and I pray for the best for you.  Love you and I'm sending some big soft furry hugs from my cat Sassie.  She said to tell you MEOW!   :D :D :D :D
Title: Re: Elise's Diary
Post by: elise on January 21, 2010, 03:25:07 AM
Quote from: SassieCat on January 20, 2010, 05:26:17 PM
Oh Elise, after all you went through last year(s), having injections should be a piece of cake for you.  I know that the flare up's are annoying and they drain so much out of a person, but keep your beautiful little chin up, they will let up.  Try to think of the "FUN" stuff you will be doing again. 

Take care HoneyGirl and know that you are in my thoughts constantly and I pray for the best for you.  Love you and I'm sending some big soft furry hugs from my cat Sassie.  She said to tell you MEOW!   :D :D :D :D
hehe. thanks  :) i cant hardly move, dads got to do everything to move me. i feel sorry for him, its always him that looks after me. i just want to be better for once and
actally go uphill and not down.
Title: Re: Elise's Diary
Post by: Scottietottie on January 21, 2010, 08:30:46 AM
Hi Elise  :)

I don't know much about JDM. I'm sure you know loads more than me. I looked it up on a website anyway because I was interested to know what it was when you mentioned it. I was encouraged to read that it usually goes uphill rather than downhill as you get older.

I, too, hope you get some uphill time soon!  I hope it wasn't all that downhill sledging that brought it on!!  :o   That sounded like so much fun. Hold on to the fun thoughts and I'm sure you'll make it through. You have a wonderful Dad!

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: Cricket on January 21, 2010, 12:23:25 PM
Dear Elsie
I've been reading your posts and wanted to jump in on the conversation.  You are one very special young lady.  You are stronger than you think in many ways.  Your spirit uplifts me to read how courageous you are in your battles.  To say that you have a wonderful dad in understated, I think he is your hero, and I think you are  his hero.  You are so lucky to have him.

I will keep you in my daily prayers.
Cricket
Title: Re: Elise's Diary
Post by: harrigan on January 21, 2010, 12:40:29 PM
Hi Elise, just wanted to say hope you start to feel better soon.  It is frustrating after feeling better for a while and being able to do fun things again.  Take care of your Dad and make sure he knows how precious you both are xx Ailsa
Title: Re: Elise's Diary
Post by: genko_b on January 21, 2010, 04:20:04 PM
Thanks for letting us know what's up. It can be discouraging when you have to go back on the stronger meds. At least they have something that can help. Take care, Elise. You are so lucky to have a dad who takes care of you  You know you can count on each other, and that is worth so much.

Genko
Title: Re: Elise's Diary
Post by: lynnmarie219 on January 21, 2010, 06:36:12 PM
((((((((Elise)))))))) Thanks for keeping us updated on how you are doing!! We all care about you so much and know that you can do it! Hang in there little one and give dad a big hug....you are both special people and so need each other.

(http://www.freesmileys.org/smileys/smiley-hug008.gif) (http://www.freesmileys.org/smileys.php)
Title: Re: Elise's Diary
Post by: SassieCat on January 21, 2010, 11:07:51 PM
Elise

I sure can relate to how you feel, once you start to feel better you want to go-go-go!  Va-Room and she's off!  :o  I wish this for you too. 

It's nice that your Dad is there for you.  Once my grown up son had to keep going to the hospital for terrible headaches.  I spent my birthday with him in the hospital and he felt soooo bad.  But I'll tell you the truth, it feels good to be needed by  your children.  I don't think there is a time when taking care of my precious little ones made me feel bad.  It does show what a kind and good heart you have to think of others!!!! 

Rest up honey girl, your Va-Room days are probably right around the corner and you'll have sooooo much fun!!! Hugs! ;D
Title: Re: Elise's Diary
Post by: elise on January 23, 2010, 11:01:42 AM
Thankyou all. Yesterday dad went and picked up work from school for me. it is three SATS papers. ive done them already so i've asked if i can have a whole lot next week.
im more weak than  i usually am and i always need help from dad. i feel sorry for him because i bet hes sick of helping me every five minitues. i had my injection last night, it stung but it wernt that bad.
Title: Re: Elise's Diary
Post by: elise on January 26, 2010, 02:11:31 AM
Today i thought i wernt as bad but when dad helps me get up its my back, and my legs feel really heavy.

I feel as if dad is getting sick of helping me because sometimes he just sighs, i dont blame him but i feel down all day then because i feel he is being nasty.

I feel sick but i know im not going to be, its a horrible feeling though.
I also keep getting indigestion and its really horrible at times. it is usually when i want to go to sleep.

All i want is to get rid of everything and be as i were a few week ago.
Title: Re: Elise's Diary
Post by: lynnmarie219 on January 26, 2010, 04:46:12 AM
Oh Elise,

I'm sure that Dad is not getting sick of helping you...so please don't feel down. He may be tired some days or not feeling well himself at times...but that does not mean that he doesn't still love you with all of his heart and would do anything to help his little girl. And you will always be his little girl...no matter how old you...even when you're a grown woman...that's just the way it goes with kids and parents....we are always their "little girls".  :)

Hang in there Elise....better days will come for you again! 
Title: Re: Elise's Diary
Post by: SassieCat on January 26, 2010, 02:08:05 PM
Elise,

I'm sure your dad wants you well and healthy too.  He probably feels a little but hopeless because he wants to make things better for you.  But it's true, you're still his darling little girl and the apple of his eye and he is still your hero. 

Sometimes I think when we don't feel well we all have a tendency to be a little down in the dumps.  But you have to remember that once you get down then there is no other way to go but UP.   :) 

You've made it through so much and you can and will make it through again.  Just hang in there!!!!   :-*   Hugs!
Title: Re: Elise's Diary
Post by: SassieCat on January 27, 2010, 01:44:22 AM
Elise,
I have a funny story that I though may bring a chuckle.  I have two cats in the house, Sassie (my siamese) and Weasley (my red hair cat - like in Harry Potter)  I was bored and decided to tie one of their play mice to the ceiling fan in the bedroom.  Weasley is lazy and only wants to bat it, but he bats it hard enough that the ceiling fan moves around too.
Sassie sees the flying mouse and jumps almost 4 feet off the ground to try to tag it, scaring the daylights out of Weasley who is trying to watch the flying mouse and doesn't know why that evil cat is jumping at him.  So he squats down and the next round when Sassie jumps in the air, along flies air-Weasley (not Air Bud) and both cats puff out, collide into each other and take off running like their tale was on fire. 

I laughed so hard, it was so funny. 

Hope that puts a smile on your face!!!! Hugs!
Title: Re: Elise's Diary
Post by: elise on March 21, 2010, 12:47:17 PM
Where do i begin?

Dad took me to the ward because im not getting any better on the 1st feb. a few days after...... i went on the commode and back into bed.... i couldnt breathe so my lungs were going weird and i couldnt breathe. The doctors got rushed to hospital and they injected me to sleep and paralysed me. And put me on a ventilator for a month.

They then drained the water in my body..... my  body were really swollen.
i had a operation, well a few. ....... a massive tube in my neck.(plasmaphresis).. my red cells came out and so did my white cells and i got new white cells. i had a trachy put in. and a tube put into my mouth. 15 days later i woke with a trachy and 2 tubes in my nose. the tubes have came out because im eating normal again. all was going well until today, i got a chest infection. so i have to wait another week for the trachy to come out.

Title: Re: Elise's Diary
Post by: Linda196 on March 21, 2010, 01:02:44 PM
Oh Dear Elise, I had hoped that we weren't hearing from you or Dad because you felt well and were busy with your school and life and just didn't have time (and I wouldn't have minded a bit)

I'm so sorry you had to go through all of this, but it sounds as though you've overcome some massive hurdles and are on the road to recovery, again!

Let us know when the trachy comes out, and how you're doing generally. You and Dad give each other a big hug from me and all your SjS World friends.
Title: Re: Elise's Diary
Post by: harrigan on March 21, 2010, 01:25:48 PM
Hope you are soon better from your chest infection and everything else Elise.  What a horrible time you have had.  I hope you really start to pick up soon and can get out in some spring sunshine and look forward to Easter.  Thinking of you and Dad XX Ailsa
Title: Re: Elise's Diary
Post by: lynnmarie219 on March 21, 2010, 01:26:59 PM
(((((Elise))))))

I was hoping the same as Linda...that we hadn't heard from you because you were busy having fun and going to school and doing all kinds of good stuff!

I'm so sorry for all that your little body has been through the past month...you are one of the strongest little girls I know and you inspire me and so many others! I am so glad to hear though that you are slowly on the  mend...if anyone can get better and back to normal (whatever that is....lol) ...its you my dear Elise!

Stay strong...keep smiling and you will be back to your old self soon!

Hugs to both you and your dad....
Title: Re: Elise's Diary
Post by: Katybarstool on March 21, 2010, 01:54:45 PM
Elise

It's lovely to see you posting again. I'm glad you're feeling better than you did, and I hope the chest infection clears soon.

Hugs
Kathyx
Title: Re: Elise's Diary
Post by: eyeamdry on March 21, 2010, 03:23:33 PM
Elise, thanks for writing to let us know how you are.  Dear girl, I hope you get well very soon and will be up and running around in the summer time.

Lucy
Title: Re: Elise's Diary
Post by: Scottietottie on March 21, 2010, 05:17:26 PM
Hi Elise  :)

Welcome back. Wow! What a horrible time you've been having. I hope you beat that latest chest infection soon and get the trachy out. You are a real inspiration you know. You tell us what's been happening to you but you never moan about it. I do so hope the future is kinder to you! (and your Dad. How is he?)

Take care - (((((( gentle hugs )))))  Scottie  :)
Title: Re: Elise's Diary
Post by: ktfabian on March 22, 2010, 02:06:34 AM
Hello Elise,

I was just thinking of you the other day as I still have your picture that your Dad sent a few years ago on the bulletin board in my craft room. I was hoping that you were doing well and playing with all of your friends and such.  I'm so sorry that you aren't doing those things and that you are feeling so bad.  I hope by the time your read this that the trachy is out and that your chest is feeling much, much better!!!

You continue to amaze me,  young lady, with your strength and courage! You truly are an inpiration to all of us here, and so is your Dad.  You've been through so much and have bounced back with good humor and a strong spirit and I know you will from this current battle, too.
You and Dad and all of your family are in my prayers.  Get well and get your strength back, cutie, and get back to the fun things in your life.

(((((((((((((((gentle hugs)))))))))))))) Share some of those hugs with Dad, ok?
Tracy
Title: Re: Elise's Diary
Post by: Bucky on March 22, 2010, 02:33:26 PM
Hi Elise,

Sending you some sunny get well wishes today.   8)  I'm sorry you haven't been feeling well.   :'(

I hope your infection goes away quickly so you can get back to being a 10 yr. old, soon to be an 11 yr. old next month!!   ;D

Gentle hugs to you & your family.

Bucky

P.S.  Do you still take pictures with your camera?

Title: Re: Elise's Diary
Post by: elise on March 23, 2010, 05:34:17 AM
Dads ok... looking after me lol.he had his birthday when i was asleep. how horrible that must of been for him.

i dont use my camera because its at home......... it sounds like im gonna spend my birthday here. im just fed up. been here for 9 weeks now
Title: Re: Elise's Diary
Post by: jonnell on March 23, 2010, 07:14:51 AM
Im sorry your not feeling good,  I am praying that you will get well soon.  Jenna and I send our love and best wishes to you and your dad.
Title: Re: Elise's Diary
Post by: elise on March 23, 2010, 08:07:41 AM
Just had physio...............sitting on the edge of the bed was fine but when they started helping me move from the bed to a board to my wheelchair......my sides pulled so i had to get back into bed. i feel as if im letting dad down because he really wants to go home because he keeps going on about me trying for the physio and thats how i will get home quicker.... i know that and im trying my best. it can get quite frustrating at times because im trying my best and its as if dads pushing me to do more.

the hospital foods are absolutely horrible. with the trachy i have to have tape change daily...around my neck so it holds the trachy in place. dad does it... which makes me more calm its just worrying when he cleans it.

how are you all?
Title: Re: Elise's Diary
Post by: elise on March 24, 2010, 04:19:34 AM
ive just been told that my trachy is  going to get taped over for 24 hours. see how i cope with that and if its ok then it can come out! im worried though because its being
taped over in a minitue.
Title: Re: Elise's Diary
Post by: Linda196 on March 24, 2010, 07:53:11 AM
Elise, have you been able to hold your finger over the trachy to say a few words yet? If that's been working, then taping over shouldn't be a problem, and you'll be constantly watched while it's covered anyway, and the tape can come off in an instant if need be...sometimes even being worried about it is enough to ask to have it opened sooner than expected, and it's nothing to worry about. When the time is right , you'll tolerate it just fine, and that's one more step to getting rid if it!

I must say young lady, you've been sounding very grown up in your recent posts! I do believe our little girl is growing up...fast!
Title: Re: Elise's Diary
Post by: elise on March 24, 2010, 01:09:48 PM
yep i can do the speaking with my fingeer on the end and i can do speaking valve. we are being moved into a room on our own because i have a bug.... only some sort of cold and they dont want other patients to catch it. been speaking about my birthday in here. then ill have two birthdays lol. im not bothered about stopping in anymore. becasuse i know ill soon be out.
Title: Re: Elise's Diary
Post by: elise on March 25, 2010, 09:13:53 AM
today i woke up..... had breakfast and visitors came  :)... it was a surprise because im not expecting anyone this week. i dont really have much news . the doctors are on about weening me off the trachy slowly and the physios came twice today. if theres any more news ill keep you posted.
sending all my love.
Title: Re: Elise's Diary
Post by: elise on March 29, 2010, 05:15:56 AM
Today i got up, got dad up and we started getting ready as usual. The physios have only just came and theyre wanting to get me sitting on the edge of the bed. i asked if they could wait till dad gets back and she were saying stuff like your a big girl now, your dads not gonna be here all the time. i refused to do as she said and its upset me.
Title: Re: Elise's Diary
Post by: elise on April 04, 2010, 05:20:14 AM
Pooh. Thankyou very much for the guardian angel and the little pin badge with it. I look at it every time i worry about someone or something. I also look at it before i go to bed. Your little note made me smile. Thankyou.

Im just getting to that point now where i am fed up all of the time. Its better when i have visitors but i hardly have any, and they dont stop for long so when they have to go i cant help myself, tears leak out my eyes. It cheers me up while there here though, its just thinking of things to say to them. When they bring presents is the best though hehe.
Its nearly been a week since ive had my trachy out. I can talk from when they took it out and im just worried about when they change the dressing, wont my scar be stuck to the pad or something? its just so worrying lol.

It were getting to that point where there were nothing else they could do so dad were getting excited and i were for going home but its just the physios wanting to keep us in longer so we were gonna discharge ourselfs the next week if it were just physios coming and nothing were said. He seeked advice first though but a couple of days after the doctors came for a meeting with mum and dad, mum came back, her eyes red raw and dad looked upset, my bones are weak as well as my muscles, but they will come back with my muscles and mum and dad can fix that too at home. There wanting to keep me in another 4 month and all it is is physio.

Im sick of the physio now, there wanting to get me standind which im not confident enough at yet and i dont feel i can do it. id rather just do leg excersises. I want to swear at the physios and tell them to leave me alone. This is endless torture. When will it stop?
Title: Re: Elise's Diary
Post by: genko_b on April 04, 2010, 07:35:51 AM
Oh dear Elise - 4 more months in there? That does seem like a very long time. Since I'm not a doctor it's hard to know why you would need that, but I imagine they think it will be easier for everyone for you to get enough physio if you just stay there rather than traveling back and forth. They really must think it will help you so you can be strong when you get out. But I'm sure it is discouraging for you and your family.

We will be thinking of you every day and hoping you are getting better and stronger so that when you do get out you will feel like doing things and being out and about. All of us here just want you to feel better and be stronger and we think you are such a fine young woman. You are so lucky to have a family that takes such good care of you as well.

Our best to you all on this Easter Sunday.

Genko
Title: Re: Elise's Diary
Post by: lynnmarie219 on April 04, 2010, 09:00:06 PM
Elise,

My oh my....you sure do have so much going on and you just keep hanging in there...you are so very strong!

I can also understand what you mean about having visitors...it must be very nice to see different people now and then instead of the same old people at the hospital every day...even though I'm sure they are very nice and want to help you! I mean...how can they not just absolutely love our Elise and her family??  ;D 

Hang in there Elise.....you are in my thoughts....sending you lots of hugs!(http://www.freesmileys.org/smileys/smiley-hug008.gif) (http://www.freesmileys.org/smileys.php)
Title: Re: Elise's Diary
Post by: Poochie on April 04, 2010, 11:30:53 PM
Hi there Little One, how you doing?  I'm so glad you like the gift I sent you.  I just had to buy it the minute I saw it.  I love mine so much and it reminds me of you all the time.

I pray every night that you will be well and happy real soon.  I also ask that you be given some extra courage to overcome this latest set back you are going through.  I can't imagine how you are feeling, but it must be so horrible. 

I wouldn't recommend you swear at the physios, but I know exactly what you mean.  When I was going through it with my legs and the therapist was turning and bending and stretching them I just wanted to scream and punch her lights out. ;D But I knew I shouldn't, so I behaved myself.  However, it wasn't at all easy. :D

Please try to do what the doctor's tell you, so you can get released with good grades.  I don't want to hear that you and Dad broke out and are on the lam.   :D 

Maybe with the nice weather setting in with the sunshine and warm air, you could persuade the doctors to let Dad wheel you outside for some fresh air. 

Hang in there my little heroine, you have made it this far, you can do it for a bit longer.

Hugs, love and smoochies,  Pooh
Title: Re: Elise's Diary
Post by: elise on April 05, 2010, 12:30:39 PM
Thankyou everyone.

Well at the moment i have shingles and ive been put in another side room ........ it is ever so painful and im scared to go to the toilet because of the soreness.
We have been given some creams for it but they dont seem to be working, it seems to irritate it more.... my aunty suggested a cold compress... something cold always helps but dad not allow that......please could anyone help?

Thankyou :)
Title: Re: Elise's Diary
Post by: elise on May 27, 2010, 02:52:27 AM
Well just as i were getting sick of being in the  hospital, we were told we could go home 2 weeks ago on thursday!! We all cried with joy. Im at home now & it just feels so much better than being in hospital. My mood has picked up and i am laughing and joking again. What it was, they tried me on a new tablet  December instead of my cyclophosphamide and Methetrexete injections, it could be a miracle type of thing, but i got all of the side effects, like water in lungs, muscle weakness, strugling to walk, bad back ache and all my muscles swelled up. It was like water in the body. When we were staying in the hospital , we made great friends with the receptionist Anna, She was easy-going and you could have a joke with her. She just made my life better whilst i was in hospital.
The day we left, I made a friend in the hospital, i were talking to him because he was worrying, he had to have some wiggly's put in, he had two lumps on his lungs, so i were explaining that its nothing to worry about and what happens and things. The week before i went home, id had my own central line out and i was perfectly fine! in fact, i had a chinese on the same day! it was delicious! .......I went to the hospital school and we made biscuits and in the afternoon, i played on harry potter on PC. Then at 3 o' clock my school teacher John said "you know what this means doesnt it?" because i was going to go home! i was sad and happy at the same time because  i really enjoyed the school at hospital.


We got back to the ward to say our farewells, the receptionist said "youve been in hospital for 101 Days! " it shocked me and made me laugh because she'd obviously been counting! LOL. When i got home, Emma (my sister) was there, she did welcome home banners and balloons, thre was a little Buffey on the table. i was so happy to be home!




Now at school, im having problems with 3 people, Demi, Christie & Ellie. Ellie is being complete nasty to me an it upsets me, she were kickig my wheelchair and then the enxt day she were trying to show off saying look at my tiara! ad it wasnt a tiara, it was a headband so i said ellie.its a headband and she went no it isnt, and even holly and mrs stafford agred with me and said its a headband and ellie said elise you wouldnt know, so basically she was saying that im thick :l and yeerday we had a massive arument, because i posted my horible day at school on facbook. an she swore at me and things back, so dad told me to delete it becauseit was causing arguments, so i deleted it.... i know dad wasnt being funny. but then elie came online and said why have u deleted that post? i said because i wanted to and the argument grew bgger and bigger then she said elise why don u go and boil r head i ur wee like  alwYS Do/ hat made me laugh beause a 5 year old would come up with something like that and i dont even boil my head in my wee.... so i said to her that shes acting like a 5 year od and she went and yor not? when actually i wasnt oing calling her ames and telling her to boil her head in wee! LOl. then she said lets just forget about it and ignor each other, so i said okay, and did happily....butthen she emailed me saying if u think ur so clever then right a paragraph ou me go on, dint think so and i messaged her back saying ellie im not foolish, your saying that s you can show your mum and she an go to school and tell the headteacher. but ie already told the headteacher mr loker, once about her annoying me and he sorte it out, then christie called me bald or somet like ive ardly got o hair, i thought christie i could rely o, but obiously not.....that really upset me and i started crying, s dad went to shool yesterday morning and told the headteacher,he said that he will sort it out and that f she does ne more, she will get expelled. now i have no frieds,,,, theres one boy thats disabled too. i chat with him... theres onthing wrong with having a friend thats a boy is it? mr loker said i can keep off school till after half term to calm down..thats nice of him ;) .

Next friday ive got to go to hospital for my cyclophospamide and there gonna change my plasters. worried lol because its back to canulas and i havnt had one for such a ong time! i know i will be fine though :)

This saturday me dad and mum are going shopping and then on sunday we are having a meal and tonight im having a pizza! arnt i spoilt? lol :)

From elise xxxx
Title: Re: Elise's Diary
Post by: genko_b on May 27, 2010, 08:31:08 AM
Hi Elise:

It's so good to hear from you here again, and great to hear that you are out of the hospital and everyone can be at home.

But that's too bad about the kids at school being bullies. At least the school is taking it seriously. It can be very hurtful when people say mean things, even if you know they are not true. By the way, it is fine to have a friend that is a boy. The most important thing is to have friends who understand you and treat you well, otherwise they are not real friends. Those of us who have illnesses like we do can understand each other pretty well, so that's a good start. I hope you think of all of us at Sjogren's World as friends too.

Well take care and have a great weekend with your family. It sounds like you have some fun things planned. And come back and visit us here - we always love hearing from you.

Genko
Title: Re: Elise's Diary
Post by: Cricket on May 27, 2010, 09:47:12 AM
Dear Elise

I am so glad to hear that you are home from the hospital, they are no fun.  Iam sorry to hear that you are getting bullied.  I used to get bullied alot in school, but my school did nothing about it.   I know it is very hard to stand up to bullies, but if anyone could get past this it is you.  You are strong, courageous, have a sense of humor and are a great person.  You have been through more than they will ever go through, and that makes you a fighter and a strong young woman.

I will pray for you.
Love
    Cricket
Title: Re: Elise's Diary
Post by: Dolly Dimples on May 27, 2010, 10:17:24 AM
  Well done girl!!
                Hey after what you been through, whats a couple of bullies?
                                    Stay strong,  all our Prayers are with you.
                                                      Hugs Dolly


















Title: Re: Elise's Diary
Post by: elise on May 29, 2010, 12:49:15 PM
thanks everyone :)
Title: Re: Elise's Diary
Post by: lynnmarie219 on May 29, 2010, 07:58:00 PM
Wow! 101 days in the hospital....I can certainly understand why you wanted to get home but also how you will miss some of the friends you made there after all of that time!

As far as the bullies...I'm glad that you and your dad stood up to them....and I'm glad that you didn't stoop to her level when Ellie was being mean to you in school and on the computer. Don't back down to bullies but don't act like them either...that will make them the maddest of all....lol!

As far as having a friend that is a boy...yes indeed...that's not a bad thing...nothing wrong with that at all. I have had a friend that is a boy (well a man now) for over 25 years. We know just about everything about each even though we now live far away each other. We have been through so many good times and bad times together and are very close. It's a wonderful friendship and very special...so no...nothing wrong with having a boy for a friend!  ;D

Hang in there Elise...and IM glad that you are home now! Enjoy your weekend and  your pizza. I absolutely LOVE pizza! (http://www.freesmileys.org/emoticons/emoticon-object-085.gif) (http://www.freesmileys.org/emoticons.php)
Title: Re: Elise's Diary
Post by: elise on July 31, 2010, 05:11:32 AM
Yesterday i had my chemotherapy, it made me anxious because last time i had my chemo, the fith time they thought they had the canula in and my whole hand puffed up!

But Dr Dan, Well he got the canula in first time :) and i got home at half 7 !! :)

im getting more stressed than usual :( im just really worried, i dont know whats happening to me!? :(
Title: Re: Elise's Diary
Post by: elise on July 31, 2010, 05:14:41 AM
i left my primary school last tthursday, was so upsetting , we were all crying [ the girls] and the boys were just looking arund in assembaly laughing XD
But i had my t-shirt signed :)
i cant wait to start my new secondary school!! i love the uniform :D mum and dad were like " i cant believe your growing up so fast" im just  like " i know :) "
On facebook, i sent an email to my friends to send them letters to keep in touch [ to the ones that arn't going to the same secondary school as me" and they havnt replied yet lol :)

im making my own book too ! I keep posting for my story to be in magazines but they arnt publishing them!?! :(
Title: Re: Elise's Diary
Post by: Scottietottie on July 31, 2010, 07:50:58 AM
Hi Elise  :)

It's a big step going from primary school to secondary school but I really think you will take it in your stride! Liking the uniform is a good start!  ;)

I'm sure your friends will get back to you too. Real friends do. You'll meet loads of new people at the secondary school too and make friends there.

Lots of writers get rejected before they finally get things published! Good luck with that too.

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: SassieCat on July 31, 2010, 07:33:24 PM
Elise,

I have to agree with your parents, my you are growing up so fast.  I think you'll like secondary school, after a few weeks it will seem like you've been there forever. 

I can understand the stressing part too, I think that comes with getting a little older and growing.  Knowing that you'll be able to get a little bit of a grip on it and deal with things.  Just look at all you've been though already, you're such a brave little gal already.

A "BOOK", how sweet is that!  I am so happy that you're giving it the effort.  How many fans have you already?  I know I've read every thread and still enjoy hearing how you've come along.  You're my own little personal heroine.  When it gets published, please save some to sign for your fans!  lol 

Many hugs  ;)
Title: Re: Elise's Diary
Post by: elise on August 01, 2010, 10:01:20 AM
thankyou guys :)
Title: Re: Elise's Diary
Post by: lynnmarie219 on August 01, 2010, 12:23:52 PM
Hi Elise,

Oh yes....moving on to new school is both scary and exciting at the same time...but you all of a people will be able to do it just fine! You will keep some of your old friends and make many new ones...its all part of life and growing up!

Hang in there my friend...and save me a copy of that book when you write it too....I would also like to buy a "signed" copy of it!

Hugs to you.....

 :)

Title: Re: Elise's Diary
Post by: elise on September 01, 2010, 05:32:16 AM
Friday was my chemo... its my last time next month!!!!!!!!


im so excited to go to my new school :)
Title: Re: Elise's Diary
Post by: Scottietottie on September 01, 2010, 07:16:50 AM
Hi elise  :)

That will be nice - seeing the back of your chemo!

I hope you thoroughly enjoy your new school and make lots of new friends. Not long now!

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: elise on September 01, 2010, 07:54:56 AM
Thanks :)

my sister and cousin is in the same school so it eased my mind a little bit. 

me and dad are baking the cake at the moment, haha.

im having my injection tomorrow :(
Title: Re: Elise's Diary
Post by: Bucky on September 01, 2010, 12:40:39 PM
Elise . . . . how exciting going to a new school.  Having your sister and cousin there will help too. 

Cake? . . Yum . . . I love cake!  Eat a piece for me.   ;D

Hope your injection doesn't hurt too much for you tomorrow.  Although, you are a strong young lady and have been through so many shots, etc. that this probably won't bother you at all.  You're very brave.  We're proud of you!

Take each day, one at a time. 

Make new friends, but keep the old - one is silver and the other gold.  (This was a little song we use to sing in Girl Scouts.)

Hugs,
Bucky
Title: Re: Elise's Diary
Post by: SassieCat on September 01, 2010, 02:49:46 PM
New School, Wow that does sound like fun!  I hope you're looking forward to all the new adventures being in a new school can have.  Lot's more fun than those shots for sure!  I'm happy that there will be a few people there that you know. 

Let us know how it goes!

ummmmm cake..... I love chocolate cake myself.  You're making me hungry... lol 

Hugs
Sassie
Title: Re: Elise's Diary
Post by: elise on December 08, 2010, 03:31:48 AM
Thanks,

 I still have to have my chemo, but the best thing about it, is that they've changed it to every 3 months!  :D

My new school is great, I enjoy it more than my other school I used to go to.
I love every subject, there not even one that I don't like.

I don't use my wheelchair at school, its just incase.

I made loads of new friends, Charlie is my best friend :). shes always there for me.




From
Elise xx
Title: Re: Elise's Diary
Post by: Scottietottie on December 08, 2010, 08:23:58 AM
hi Elise  :)

Delighted to see you are doing well and I'm glad you are enjoying your new school. Charlie sounds like a good friend. I bet YOU are always there for her too!

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: lynnmarie219 on December 09, 2010, 05:18:33 PM
Hi Elise,

Nice to hear from you and to know that you are doing well at your new school!

So glad that you have a good friend in Charlie....isn't it nice to have a best friend that you can talk to and be honest with? I think it's great! 

Hope you are getting ready for the holiday season coming up.....take good care!
Title: Re: Elise's Diary
Post by: genko_b on December 09, 2010, 05:32:21 PM
Happy Holidays, Elise!

It's so good to hear from you and hear you are doing well. And great to hear you have a new friend.  All the best to your family.

Genko
Title: Re: Elise's Diary
Post by: elise on January 05, 2011, 06:57:46 AM
Thankyou,

A few days ago was a downfall (New-Years Eve).
I decided to watch 'Remember Me' with mum. Dad decided to take my temperature and it was 38.4, high. So dad phoned QMC,E8 and the nurse said I need a blood count test. Dad took me to the hospital, but mum couldn't come because she has flu like all of us. So dad set off in the car, and we got there at 10:30PM. We went straight to E38 and we were waiting up 12AM. The doctor came at 2PM and were talking to me etc. After another hour, they moved us up to E17......The nurse came and the doctor did the same, they tried to find Entanox for me, while I had my needle, and they couldn't find any, so I had the needle without anything......
They then gave me some tablets but in liquid form, I hate liquid form, I was nearly gagging. We eventually went home at 3AM. The worst bit is, in the car, I was throwing my medicines back up. We arrived home at 4AM. I went straight to bed! :D
Title: Re: Elise's Diary
Post by: Scottietottie on January 05, 2011, 08:53:18 AM
Awww poor you Elise!  :(

What a way to spend Hogmany (what New Year's Eve is called in Scotland)

I hope you and your family are feeling a bit better now and that 2011 turns out good for you after such a bad start!

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: sewandsew on January 05, 2011, 11:27:45 AM
So sorry to read about your unfortunate event.  Your year can only get better.  Keep believing!
Title: Re: Elise's Diary
Post by: JannaLee on January 15, 2011, 05:07:02 PM
Darling child!

I hope you are better now and everyone is well in your house!

Sending you a hug!
Janna
Title: Re: Elise's Diary
Post by: Sha on January 15, 2011, 07:47:08 PM
Sweetheart~ I hope you are feeling better....that is NO fun! Hope mum is feeling better also!

Sha :-*
Title: Re: Elise's Diary
Post by: lynnmarie219 on January 15, 2011, 08:30:26 PM
(((((((Elise))))))

Hope you got all of the bad stuff out of the way now and your New Year gets better and better!  :)
Title: Re: Elise's Diary
Post by: craigmosley on January 16, 2011, 04:59:53 AM
We are all ok here............Elise has another injection on monday for pneumonia and she is upset by it.....its nice to see old friends still giving us support xxxx
Title: Re: Elise's Diary
Post by: genko_b on January 16, 2011, 08:12:27 AM
Hang in there. We don't want to hear Elisa has been sick, but still always are thinking of you and wishing you well.

Take care,

Genko
Title: Re: Elise's Diary
Post by: JannaLee on January 23, 2011, 07:30:29 AM
Well, It's been a few days since the injection.  Are you feeling better, honey?
Title: Re: Elise's Diary
Post by: elise on January 24, 2011, 12:08:23 AM
Thanks,
Yeah, my bones got a bit stiff but i'm ok now. I wouldn't let anyone go near my arm because it was bruised lol.
Title: Re: Elise's Diary
Post by: eyeamdry on January 24, 2011, 12:25:16 AM
Hi Elise, I am up very early in the morning, or in the middle of night and I think you just posted this.  I am in the US and wonder if you're now getting up.
I should have been in bed a long time ago!! lol

I am glad to see that your arm is better and you know darn well how to take care of yourself!  You are a very positive and wonderful gal and we all love you on here.  Stay well.  Lucy
Title: Re: Elise's Diary
Post by: dbab on January 24, 2011, 07:01:01 AM
Just thinking of you Elise... I hope you are doing much better today.  Love you sweetie... dbab
Title: Re: Elise's Diary
Post by: JannaLee on January 24, 2011, 11:12:50 AM
Glad to hear you have improved and I know how bruised your arm gets from antibiotic injections! 
Title: Re: Elise's Diary
Post by: elise on May 05, 2011, 02:41:04 AM
5th May 2011

Ive been in the hospital since 25th May , with innflammation of the brain, ive been having methyl prednisiolone, chemotherrapy and immunoglobulins, i also had a lumber puncture. im going home midday tomorroow.
Title: Re: Elise's Diary
Post by: Scottietottie on May 05, 2011, 08:02:11 AM
Hi Elise  :)

I'm sorry to hear you have been having a rough time again. It's good to hear you are going home tomorrow. I do so wish you could get some time in without illness. Life is so unfair sometimes. I hope all those meds do their job!

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: kimbo on May 05, 2011, 04:26:18 PM
Hey Elise,

So good to see you here. I was reading up on your adventures.

And thinking about how courageous you are. Your cute spirit shows through the cyber space of miles.

I will be thinking and praying for you and your family.

You are an inspiration of strength.

I am sorry you are having to endure so much health issues.

I am curious, what kind of television programs you watch in your country, and do you watch any American programs.

I love to watch American Idol here in America, and also Dancing with the Stars.

Do you play video games?  Do you have any pets?

I have a dog, named Elroy. He thinks he is in charge of the house. I am afraid he might be. My husband and I raised two Daughters successfully. But our Dog seems to be in charge here. We call him our baby.

I hope you are feeling better. Thank you for keeping us updated.

Hugs and blessing, kimbo
Title: Re: Elise's Diary
Post by: elise on May 10, 2011, 02:53:57 AM
Quote
I am curious, what kind of television programs you watch in your country, and do you watch any American programs.


I watch the simpsons, hollyoaks, celebrity juice, josie gibson , judge judy , doctor who and family guy.

American - I think the simpsons is american, and true blood.

Yep i love to play video games and nope i don't have any pets, just goldfish. -Twenty, i named them all!
Angelina, Lexie, Martin, Lucifer, Stewie, Peter, Fred, Mary, Jason, Lewis, Kerry, Nina, George, Ben, Owen, Reece, Kelly, Rosie, Rubie and Julie.

Elroy, I like that name.

Monday i had my injection (yesterday to me) it really hurts on my left leg but doesnt on my right leg  ???
Title: Re: Elise's Diary
Post by: kimbo on May 10, 2011, 05:55:21 AM
Hey Elise,

Sorry the injection hurt. I hope it helps all that it is meant to.

I love that you have 20 gold fish and named them all. Can you identify all of them with each name? If you can!!!! I am really impressed.

Yeah the Simpson's are American, I don't know about true blood.  ;D  I have a daughter who quotes Homer, like he is an Einstein figure.

I think we should put Judge Judy in charge. She could bring King Kong under submission!

Did you watch the wedding? Kate and that Prince William?    I did!    Big EVENT!

I hope you have a GREAT day.

Hugs and Blessings, kimbo
Title: Re: Elise's Diary
Post by: elise on May 10, 2011, 11:58:49 AM
I can identify most of the goldfish.

Homer is awsome  ;D I agree with you about judge judy, she soon sorts things out!

Yeah i did watch the royal wedding, i hated her dress though

Thanks :) my sister has just been to visit me :) Im not going to school till august, because it will take that long for my brain to recover, and even then im doing half days. My sister comes to visit every sunday and comes every tuesday to do some work with me, and she sets me some work and sets me some reading.

Ive got the hospital thursday, im really scared because its the first time im having a needle under the skin for half an hour in each leg for immunoglobulin infusion :( i heard you get a red lump thats really itchy and im really not looking forward to it.
Title: Re: Elise's Diary
Post by: kimbo on May 10, 2011, 04:53:59 PM
You know that dress you hated, was over $400,000 dollars. ( I know the $$ translates differently to you, in England)
Any way, I am thinking spend $700 and pocket the rest.   :)   Or give it to a good cause. Silly money!  >:(   ::)

I am glad your sister is there to help you. Sisters are GREAT.  :)  I have one and we look after one another.

I am sorry you have to have those awful injections. I am sure you have done this stuff so long, you have developed coping skills when you receive care.
I am sure it is good care, just wish it was painless. Maybe you can think of each gold fish, or focus on a favorite program while you are in this leg procedure?
Title: Re: Elise's Diary
Post by: lynnmarie219 on May 10, 2011, 08:15:50 PM
Hi Elise!

So glad to hear from you...but so sorry for all that you have been through recently! You amaze me at how you just keep going on with such a positive attitude...there are a lot of people who could learn from you!

Hang in there my friend....and I hope you start to feel better very soon.

I am also amazed that you named all 20 of your goldfish and can identify most of them....very cool!

Stay strong.....
Title: Re: Elise's Diary
Post by: Bucky on May 10, 2011, 08:43:14 PM
Elise,

You are such a strong young lady.  I hope your hospital infusion goes quickly and as pain free as possible for you.

By the way - didn't you have a birthday in April?  Are you now 12?  Time goes by so quickly and you are growing up before our very eyes.   ;)  Belated Happy Birthday!!!

Bucky

 
Title: Re: Elise's Diary
Post by: elise on May 12, 2011, 09:34:02 AM
Quote from: kimbo on May 10, 2011, 04:53:59 PM
You know that dress you hated, was over $400,000 dollars. ( I know the $$ translates differently to you, in England)
Any way, I am thinking spend $700 and pocket the rest.   :)   Or give it to a good cause. Silly money!  >:(   ::)

I am glad your sister is there to help you. Sisters are GREAT.  :)  I have one and we look after one another.

I am sorry you have to have those awful injections. I am sure you have done this stuff so long, you have developed coping skills when you receive care.
I am sure it is good care, just wish it was painless. Maybe you can think of each gold fish, or focus on a favorite program while you are in this leg procedure?
Wow what a lot of money to spend on a dress.... especially to say it was hideous!  : :P

I think the wedding was over the top really, yeah they're royal and famous, but they're still people , like us at the end of the day.

I've only just stopped looking at what happens. I used to have to always look at what dad was doing, but i just cant even think about anything else, i just squeeze mums hand and have a little cry afterwards - sometimes i end up getting mad though because i start thinking that i have to have this every week and im getting to the verge of being sick of it.
Title: Re: Elise's Diary
Post by: elise on May 12, 2011, 09:40:36 AM
Quote from: Bucky on May 10, 2011, 08:43:14 PM
Elise,

You are such a strong young lady.  I hope your hospital infusion goes quickly and as pain free as possible for you.

By the way - didn't you have a birthday in April?  Are you now 12?  Time goes by so quickly and you are growing up before our very eyes.   ;)  Belated Happy Birthday!!!

Bucky

 

Thankyou :) Yes i am now twelve and it was my birthday and the 19th of April. - About the hospital - i got there and i missed breakfast because i was worrying that much. Really there was nothing to worry about! i didnt even feel the needle! A lump did form in my legs though- and it feels really bruised and tender :( the doctor did my left leg-

Best about it- Guess who did my right leg-?
DAD! . im so proud of him :) Hes very brave because i know it upsets him when he has to hurt me. Well done dad xx
Title: Re: Elise's Diary
Post by: kimbo on May 12, 2011, 05:30:05 PM
I am glad it is over.

Your dad is a Super HERO! So thankful that your Mum and Dad take such great care of you.  :)

Hugs, kimbo
Title: Re: Elise's Diary
Post by: elise on May 13, 2011, 04:43:03 AM
Quote from: kimbo on May 12, 2011, 05:30:05 PM
I am glad it is over.

Your dad is a Super HERO! So thankful that your Mum and Dad take such great care of you.  :)

Hugs, kimbo

I don't know what i'd do without them. My legs are still very tender today but they have gone down from being puffed-up.
Title: Re: Elise's Diary
Post by: lynnmarie219 on May 14, 2011, 04:49:06 PM
And I'll bet mum and dad feel the same way...they dont know what they would do without you either! You sure have a wonderful family...you are all very blessed!


((((((Elise and family)))))))
Title: Re: Elise's Diary
Post by: elise on October 26, 2011, 09:03:41 AM
Just having  my immugobulins , I used to be on the verge of crying every time i had it done, but now i'm getting used to it, I worry at first but then at the point where dad puts the mini-needles in, i just get it over and done with.

Once, one of the needle sites leaked. It wasn't funny at the time but It's funny now .

Dad had to take it out and it took over two hours for it all to go in.
My leg was like a balloon!!  :o

I have started seeing a psychiatrist at the hospital, i didn't like the one i seen before because she talked to me like i was a baby. But this psychiatrist is different, she listens to me and we have a laugh together, she keeps everything i say secret, and tells me some of her secrets. I really enjoy talking to her. She told me to keep a feelings book and write in it every time i feel happy, sad etc.

Having my flu jab Monday, i get to go off school :D!

my chemotherapy is on the 11th November, and mum said shes taking me trick of treating 'cause my chemos not long after that.

Title: Re: Elise's Diary
Post by: Scottietottie on October 26, 2011, 12:04:52 PM
Hello Elise  :)

How nice to see you again!

Your positive attitude is a lesson to us all. There are quite a few new people in here since you last posted. Good luck with your treatment. I hope one day there will be light at the end of the tunnel!

How is school going?

Take care - Scottie  :)
Title: Re: Elise's Diary
Post by: elise on November 11, 2011, 01:36:21 PM
Schools fine, im full time now, got science exam and maths exam next week.

Been for my chemotherapy today.
Got there half eight, waited an hour for a doctor to come... i'm not complaining , we got sorted at 12pm once before.

Everything went smoothly, but the last hour of the flush... i noticed a white long patch on my arm where my vein was spreading, and I told the nurse, she took my cannula out and we finished at 6.... at half eight we got ONE TABLET sorted, wasn't allowed to go until i got that tablet, and every nurse knows i can only take tablets, and they gave me this medicine in the syringe, it was disgusting, i actually thought i was doing to throw up.  I'm home now though, and that's all that matters I guess x I'll keep you informed what goes off.
Title: Re: Elise's Diary
Post by: elise on November 15, 2011, 07:30:48 AM
I've been to the doctors today, because my chest has been feeling tight when i cough and laugh.... and they gave me some Gaviscon to take as needed.

I still feel quite rough and weak. But i don't know if dad believes me.
Title: Re: Elise's Diary
Post by: kimbo on November 27, 2011, 07:53:41 PM
Hi Elise,

I hope your feeling better.

Sometimes when I feel rough, I want to squeeze my husbands face between my hands, grit my teeth and says, " I feel like YUCK".   But I don't , I try to understand that others have a hard time understanding.

I like that you journal your illness and feelings. Its a good idea.
I have been trying to journal, also, sometimes I get behind and I try to remember back. Remembering back is not as easy as keeping up.
:)
Hugs, kimbo
Title: Re: Elise's Diary
Post by: craigm on June 19, 2018, 02:05:38 PM
Hi All.... Elises dad here..Craig

Its been a while...

well.........all has been good until end of April.....elise is now 19 and just had Cerebal Vasculitis

treatment started June 1st Rutiximab.........no improvement as yet

Title: Re: Elise's Diary
Post by: Scottietottie on June 19, 2018, 03:22:40 PM
Oh Craig - so sorry to hear that. Elise is an amazing young woman who has been through so much. We know she's a fighter. Here's hoping she fights this one too!

Thoughts with you - Scottie
Title: Re: Elise's Diary
Post by: craigm on August 20, 2018, 01:19:59 PM
Sorry to say...??..

My best friend and Daughter....Elise Amy Mosley.....Passed away on Tuesday the 14th August 2018 at 10.30pm aged 19 years.

Sleep well my Angel xxxxxxxxxx :'( :'( :'( :'( :'( :'( :'( :'( :'(
Title: Re: Elise's Diary
Post by: Linda196 on August 21, 2018, 03:16:11 AM
Dear Craig, you have my deepest sympathies. Elise was a delightful ray of sunshine, with an incredibly courageous heart. I cherish the lovely little wishing dolls she sent me many years ago.

Title: Re: Elise's Diary
Post by: Scottietottie on August 21, 2018, 04:16:37 PM
Craig - I don't know what to say. I'm so sorry. You had the most amazing daughter - wise beyond her years. She always seemed to look for the positive and such a fighter. She helped me put things in proportion as I have never had to contend with the things she has battled and overcome.

Thank you for letting us all know. I'll keep you and your family in my thoughts.

Take care - Scottie  :'(
Title: Re: Elise's Diary
Post by: Carolina on August 21, 2018, 04:53:15 PM
Dear Craig,

All my sympathy and love, to you and in honor of your lovely brave daughter.

Hugs, Elaine
Title: Re: Elise's Diary
Post by: Cheryl on August 21, 2018, 06:11:49 PM
Craig,
I'm very sorry to hear of your loss.  Elise was (and will continue to be) an inspiration to many of us.  She was blessed with loving parents, and she obviously appreciated and loved you unconditionally.

May God bless and keep you.
Prayers for healing and peace,
Cheryl
Title: Re: Elise's Diary
Post by: Liz D. on August 22, 2018, 06:30:09 AM
Please accept my deepest condolences.  My heart is aching!

Liz D.
Title: Re: Elise's Diary
Post by: irish on August 24, 2018, 07:52:02 PM
Craig, I remember Elise and all the posting she did. She was such a strong girl and endured so much while having such a good attitude. I am so sorry to hear that she succumbed to these diseases. You and your family are in my prayers during this difficult time. Thank you so much for telling us. Irish
Title: Re: Elise's Diary
Post by: genko_b on September 08, 2018, 08:22:54 AM
So sorry to hear of Elise's passing. She was such a brave girl and you both were an inspiration to us all. Our hearts and prayers go out to you.

Take care,

Genko
Title: Re: Elise's Diary
Post by: Bucky on October 11, 2018, 07:32:06 PM
Craig - my sympathy to you and your family.  Elise was such a special young lady.  She knew more about medical procedures than any young person should have to know.  She handled all the doctors appointments and procedures with such maturity from a very young age. 

You can be proud of your daughter and her courage to deal with all the medical issues she's had to deal with through the years.  Both you and your wife were such a blessing to Elise.

Rest in peace, Elise . . . we will always remember what a special young lady you were.

Craig, may you find peace in knowing you did everything you could to help Elise on her medical journey through all these years.  Elise knew she could depend on you and loved you dearly.

With sympathy & prayers,

Bucky
Title: Re: Elise's Diary
Post by: susanep on October 12, 2018, 05:07:18 PM
I have been reading Elise's Diary, and I am so sorry to hear of her passing. She sounded like a real trouper in all she endured, and she loved so much.

susanep
Title: Re: Elise's Diary
Post by: Confused on October 21, 2018, 01:40:27 PM
Craig,

I do not know if you still read this but on the chance you do have you thought about a book?  You have alot of information dealing with emotions, actual events and so much that perhaps you might be able to reach out to someone who will see what you have down and it could hit the right person and may be the push on the right Dr., scientist and set someone to go after this disease the right way.

There was a good purpose for all of this and I do not know what it is/was/will be.

Just a thought
Title: Re: Elise's Diary
Post by: craigm on March 01, 2019, 11:33:45 AM
A book sounds like a good idea,
would probably help me to get through this.....but I wouldn't know how to even start.

Any ideas would be greatly received.

Craig xx
Title: Re: Elise's Diary
Post by: Confused on March 03, 2019, 09:49:52 PM
You might start by writing your memories of Elise and her battle with Sjogren's in the form of a journal.

As you put your memories on paper, more memories will, no doubt, come to mind.  I suspect once you get started, the floodgates will open and you will fill many pages.

I have heard of groups of new authors who meet to share ideas and experiences and have also seen announcements in local newspapers advertising meetings similar to those of other types

of clubs.  I don't know whether England has similar venues for new authors but it is worth investigating.  I will keep looking here and pass on ideas I come across.
Title: Re: Elise's Diary
Post by: irish on March 04, 2019, 08:22:55 AM
I am going to suggest that you make headings to your journal entries. Just a thought but maybe a short journaling of Elise prior to diagnosis...when she wasn't sick and then the symptoms that precipitated a doctors visit. Then a section of journaling or telling the story of the doctors visits that took place and led up to diagnosis.

The next step could be the treatment the first number of years and how they worked. You can put down your feelings and Elise's feelings and attitude during this time. You could then divide the journaling into the times of certain treatments or during certain years of her life. She started out a youngster and then a teen so there must have been so many challenges in those many years that were not only medical but emotional and coping for you and for here.

I think this is a start for you or something you can bounce your ideas off of. So hard to write sometimes, but I think once you get into it you will just have ideas thoughts flowing that need to be written down. Good luck with this endeavor. Elise will be proud and you will do this well. I will keep you in my prayers. Irish
Title: Re: Elise's Diary
Post by: ktfabian on March 07, 2019, 02:56:58 PM
Craig,

I am so sorry, I just heard of Elise's passing today. She was a very special, very strong girl. I still have the glass Angel and worry box she sent me when I'd sent a package to her. She told me to put my worries in the box when they got to big and I still do it to this day.

While I know this doesn't make it easier for you and your wife, your beautiful daughter touched many lives, including many of us here, and she continues to do so. I hope you find some peace in your memories.

My very, very deepest sympathies,
Tracy Fabian
Title: Re: Elise's Diary
Post by: Confused on March 08, 2019, 08:40:08 AM
bump
Title: Re: Elise's Diary
Post by: craigm on March 08, 2019, 09:58:42 AM
Thank you all so much for your kind words....it really does mean so much...

I has been just me and Elise for the last 5 years or so.....Mum ran out on us so me and Elise became best friends too.

I always felt as though I was helping Elise......But at this moment in time..and the way I am feeling I think she was helping me more.

I am only too pleased for anyone to help in anyway at all

thank you all

Craig xx
Title: Re: Elise's Diary
Post by: araminta on March 09, 2019, 03:13:07 AM
Craig, I am so sorry about your loss.   I really can't imagine what you must have gone through in the past years.

I agree with others that writing can be very therapeutic, but would add that perhaps it might be an idea to also consider other ways to help yourself.   There is a lot of good advice online, and of course everyone reacts differently in these situations, so not all the advice would apply to you.   But things like looking after your physical wellbeing (getting out of the house, good diet etc), not being afraid to ask for help, noticing things that might lift your mood and making sure you do them  - even little things like having a shower, gardening, they all can help.

I think taking one day at a time is probably a good idea too, and not expecting too much of yourself.   Treat yourself with kindness.

The book idea is great, and I think it's possible to self publish online now, though I don't know the details of that.

I hope you keep posting here, this is a very kind and supportive community.