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Is this for real

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4 replies to this topic

#1 Looking4answers


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Posted 30 December 2008 - 02:59 PM

I just wanted to wish everyone a very Happy New Year. I also wanted to ask....Am I the only one still wondering....is this really happening to me? It is really hard to believe that I have what they tell me is systemic crest. I have very few symptoms but suffer every day with terrible leg pain, tiredness and I am one cranky lady right now (my poor family and friends)! Does anyone watch House? I feel like that one female doctor who looks fine, feels okay, but yet knows the worst is yet to come.

I try to read the posts every day and feel sooo bad for what you all are experiencing. I am hoping to research this disease a lot and hopefully someday I can offer the excellent advice that all of you always have...it is impressive.

Have a wonderful New Year.

#2 Shelley Ensz

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Posted 31 December 2008 - 04:00 AM

Hi Looking4answers,

I think your wondering is a normal reaction, a bit of the phase of denial. Although I don't quite know why they refer to it as a "phase" as it is a very popular coping method. As it happens, scleroderma has a natural but unusual course of waxing and waning and sometimes it even stops progressing or even reverses itself! Plus occasionally there are treatments found to be effective for certain symptoms.

So, it is at least possible that you may actually be feeling the worst effects of the disease right now. Many of us had the most difficulty during the first 18 months of onset, and then things settled down a bit.

Crankiness can come from many things, including poorly managed pain, fatigue, medications, and not yet ideal emotional adjustment. All of those are largely things that we can improve upon, so that our family and friends can once more enjoy our happy go lucky personalities. Understanding each other, pacing ourselves, pain management, and laughter really are all healing mechanisms...so with any luck, we are all looking forward to a much jollier New Year!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Amanda Thorpe

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Posted 31 December 2008 - 12:53 PM

Hello Looking4answers

Remember the original and best black and white film "Invasion of The Body Snatchers? You closed your eyes, fell asleep and crossed over into the world of...SCLER O DERMIA!! If you listen carefully you can here the twilight zone music playing in the background, it builds to a crescendo as realisation dawns, you have become one of...THEM...a SCLERODERMIAN!! :lol:

You're in with the in crowd now baby so roll up for the magical mystery tour, step right this way! :lol:


*The concept and phraseology of sclerodermia/mian is reproduced here with the kind permission of the owner
*If you don't have a sense of humour go find one as it is the more effective at warding off the symptoms of scleroderma than garlic
*Happy New Year to all
Amanda Thorpe
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International Scleroderma Network (ISN)

#4 Jeannie McClelland

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Posted 05 January 2009 - 11:40 AM

Hi L4A,

Ayup, I'm still looking for answers 802 days after diagnosis. I like to think I've gone from denial to attack, though! I want to know everything I can about this miserable disease so I can a) stay as well as I can forever, B) be pro-active in planning for the possibility that things might go south and c) be an active and equal partner with my doctors in managing my care.

We have a page on Fatigue. And, I posted an article today on fatigue and pain in the Forum. In the partnership part of the list above, I worked with my doctor to find acceptable treatment for my pain and fatigue (and boy, does one ever affect the other.)

I think the post from Amanda (ohboyoklahoma) to you is the best I've ever read. The advice is too: start laughing, it really does help! No side effects and few "adverse events" from it, either. Well, I did spill tea down my front when I cracked up reading it, but it wasn't very hot~
Jeannie McClelland
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International Scleroderma Network

#5 canon


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Posted 07 January 2009 - 06:16 PM

Hi looking4answers,

Sorry to hear you are feeling so bad. Sometimes days are worse than others. Hopefully you'll have some good days to remember to get you through the bad like maybe your hands did not ache so much one day or maybe your legs felt alittle better. It helps me through the bad days. I look for small blessings and couint them as big. I get cranky too.

With gentle thoughts,

A happy heart is good medicine.