Author Topic: Elise's Diary  (Read 110420 times)

irish

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Re: Elise's Diary
« Reply #375 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

lynnmarie219

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Re: Elise's Diary
« Reply #376 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!

genko_b

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Re: Elise's Diary
« Reply #377 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

elise

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Re: Elise's Diary
« Reply #378 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

elise

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Re: Elise's Diary
« Reply #379 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

kimbo

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Re: Elise's Diary
« Reply #380 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
Diagnosed March of 2007. SJS/ RA Positive at 80  International-SSA strongly positive at 811-SSB 273
ANA positive at 1:1280
Hashimoto's
Gabapentin, propanol, Celebrex, Synthroid, Cytomel, vitamin D, B complex, Omega 3 complex, and multi vitamins; At 62, I seem to be a low maintenance sjog

elise

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Re: Elise's Diary
« Reply #381 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


lynnmarie219

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Re: Elise's Diary
« Reply #382 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....

elise

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Re: Elise's Diary
« Reply #383 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

ErinG

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Re: Elise's Diary
« Reply #384 on: July 06, 2009, 09:41:42 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

Scottietottie

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Re: Elise's Diary
« Reply #385 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  :)
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Never do tomorrow what you can put off till the day after tomorrow!

irish

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Re: Elise's Diary
« Reply #386 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

jonnell

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Re: Elise's Diary
« Reply #387 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

elise

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Re: Elise's Diary
« Reply #388 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  :)
« Last Edit: July 09, 2009, 01:52:37 AM by elise »

elise

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Re: Elise's Diary
« Reply #389 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