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In Need Of Encouragement


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#1 peanut

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Posted 06 December 2006 - 05:19 AM

I’ve been diagnosed for 4 months now and I feel like every month something new and major pops up. My hand is starting to curl, I can’t wear cute heals any more and despite wearing flats my feet ache most of the time, and now my eyes and mouth are drying out. I just got back from the ophthalmologist and he says my eyelids aren’t closing because the skin is so tight around my eyes. This is causing scratching, dryness and the pressure I’ve been feeling over the last month. So I get eye drops for the day and a salve at night. And if that doesn’t do it he’s going to write me a script for restasis. Another prescription? I feel like all I do is take pills. I don’t mean to be a whiner but its just one thing after another. I read somewhere that it takes three years from the diagnosis for the disease to stabilize. I was feeling rather optimistic about everything then this foot, hand, dryness hit all at once and now I’m rather discouraged, but I guess I’ll just have to get use to it for a while till things stabilize.

My husband says my disease is like an old, used car. You don’t want to look under the hood because you’ll find something wrong but if you don’t look the car won’t run.

Thanks for listening.

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#2 Claudia-DR

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Posted 06 December 2006 - 05:41 AM

Hi Peanut:

I'm so sorry to hear about your symptoms and have to agree with your husband's quote.

Sometimes it feels like everything is happening at once, doesn't it? I have also received "not so good news" from my ophtalmologist. I had huge tears running down my face after the appointment because I felt that I had too much to deal with as it was.

You know, I decided not to check my eye diagnosis on the Internet and just wait patiently until my 2nd opinion early next year.

The good news I have for you is that according to my Dr. it takes on average 1 1/2 years for things to stabilize with the sclero. Some patients are ill for even less than that.

It helps me to take it one day at a time. It's not always easy though. Try to take some time out each day to do something YOU like t do. Take a walk, go for some decaf, do some yoga, read, whatever you like to do. These moments help us unwind and give us the energy to go forward.

And remember, we're here for you whenever you need some encouragement.

Healing wishes your way,

Claudia

#3 Sheryl

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Posted 06 December 2006 - 06:02 AM

I have also had problems with the dry eyes and mouth. I used everything prescribed and after about 6 months the problem eased up. That was this summer. So far, I don't seem to be bothered with that perticular problem. Some people get it and keep it. Others, it will come and go. Hopefully, it will ease up soon or just go away. Sheryl
Strength and Warmth,
Sheryl

Sheryl Doom
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International Scleroderma Network (ISN)

#4 Sweet

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Posted 06 December 2006 - 10:45 AM

Hey Peanut - Big *hugs*

I'm so sorry you are feeling down right now. I'm glad though that you can come to us and express your concerns.

At times it does feel like "feast or famine" as my mom used to say. Just about the time though that things seem out of control and too much, things will settle down and I'm able to cope with it much better. Remember that some of these symptoms that you are having can come and go. Just because you have them now doesn't mean they are here to stay.

You may have already looked at this link, but I thought I would share it with you anyway.

Much love to you!!

http://www.sclero.or...adj/a-to-z.html

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 Heidi

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Posted 06 December 2006 - 11:29 AM

Hi Peanut,

I am so sorry you just keep getting more symptoms and things don't seem to be stablizing yet. I certainly hope that you get some relief soon!

I also wanted to share with you that Restasis is not another medication that you take orally....it is a medicated eye drop that is supposed to help your eyes produce their own tears. I have also struggled with dry eyes and my opthamologist had me try the Restasis about 2 years ago. I didn't find that it helped at all....even with it I was having to use eye drops 3-5 times a day. However, this past summer (about August) my eyes got better and I found I was only using the drops 1-2 times a day....and it has stayed that way since.

So, as others have said, many times our symptoms will come and go. I certainly hope this is the case with you and some of your symptoms start to subside.

Warm wishes,
Heidi

#6 Heidi

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Posted 06 December 2006 - 11:30 AM

Hi Claudia,

I am so sorry to hear that you got bad news from your opthamologist. I hope it isn't anything too serious! Please know that you are in my thoughts.

Warm wishes,
Heidi