Elise's Diary

[elise]

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!!   

[wordnerd]

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

*hugs*

-Lauren

[Poochie]

Aww Sweetie, don't you know "bald is beautiful" and no matter how much hair you have, you are BEAUTIFUL.

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

[ktfabian]

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. 

[craigmosley]

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

[harrigan]

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

[craigmosley]

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

[jonnell]

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

[elise]

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

[lynnmarie219]

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!

[craigmosley]

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! 

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

[elise]

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  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

[jonnell]

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

[Poochie]

Hello Lovely Little One, you are such a brave girl.   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.

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.   

Hugs, Love and God Bless,
Pooh

[elise]

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.