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Feeling Down

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#1 rlbrussell


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Posted 27 November 2006 - 08:42 PM

I was diagnosed with Diffuse Sclero in Jan 2005 after being symptomatic for 5 months. I was encouraged to get a quick diagnosis and was hopeful that I could manage this. Well it has been 15 months now and I have skin involvement that covers my entire body. I have had two rheumys now tell me I am the worst case they have ever seen. My right hand is almost completely frozen. I have developed watermelon stomach and polymyositis. It did not expect to lose my independence so quickly. I was working on my graduate degree before I got sick. I have tried to continue with no success. I have no income and lots of student loans and I am just feeling so down and unproductive. I do see the group at Hopkins every six months and I take a lot of meds. I hope things turn around soon.

Thanks for Listening
Diffuse Sclero
dx Jan 2006

#2 LisaBulman


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Posted 28 November 2006 - 02:20 AM

Hi Rosa,
I am so sorry your disease is so progressive. It is totally understandable that you would feel down. Have you applied for disability? We are all here for you.

Lisa Bulman
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#3 Heidi


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Posted 28 November 2006 - 03:17 AM

Hi Rosa,

I am so sorry that your disease has been so aggressive and progressed so quickly and the meds don't seem to be slowing things down. I am glad you have a good group of doctors watching you closely. Have they talked about you doing one of the stem cell transplant studies since your disease seems to be so aggressive?

Please do keep us posted and know that I am sending you lots of soft, gentle hugs!

Warm wishes,

#4 scleroguy


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Posted 28 November 2006 - 03:18 AM

Hi Rosa,

You are not alone, there are a lot of friendly and helpful people on this board who wish you well.

My diffuse scleroderma and dermatomyositis went through a more progressive stage early on. The progression slowed a lot after I stopped working and the doctors found the right meds. It was difficult accepting that I could no longer work, but it was important to adjust.

We are all here for you.

Updated 8/10/07: Mixed Connective Tissue Disease (dx 03/2002). Diffuse Scleroderma, Dermatomyositis.

#5 barefut


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Posted 28 November 2006 - 04:07 AM

I'm so sorry.

I'll keep you in my thoughts.

Take Care,

#6 janey


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Posted 28 November 2006 - 07:45 AM

I am so sorry that the meds haven't slowed the progression of your sclero and that you continue to develop more and more symptoms. You have every right to feel depressed Darling! I'm assuming the rheumatologists that you seeing are sclero specialists. If not, please go see one now! Here's are listing of scleroderma expert centers. Maybe you could find a specialist near you. Please keep in touch with you friends here.

Lots of big hugs,

Janey Willis
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#7 emmie


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Posted 28 November 2006 - 06:24 PM

Welcome, Rosa.

I'm so sorry your disease has taken such an aggressive course. I hope finding this forum will help you find information, encouragement, support and a sense of understanding.

Please post often with any questions, thoughts, ideas, or vents...we all do! Glad you found us.

xoxo emmie

#8 kiwimum03


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Posted 28 November 2006 - 07:38 PM

Hi Rosa,

I am so sorry your disease is progressing so rapidly, please know you are in all of our thoughts. Sending out Big Hugs to you.


#9 Dee


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Posted 30 November 2006 - 10:56 AM

Dear Rosa,

My heart goes out to you! Your body is suffering and you have had dramatic changes in your dreams. I'm very glad you found us because info and support are so important. Everyone here is willing to help you. Heidi's suggestion to check out disability is a good idea.

It is very natural that you feel down. Your life has changed dramatically. But, you still have a lot of potential! You are much more than just your body--your mind, personality, and friendship can still be productive.

Give yourself time and permission to adjust, but also look to stay busy with things you enjoy. Do you enjoy reading? Music? Sports? It is very important to stay connected to people. Do you have someone you can share your feelings with? I would suggest a counselor--perhaps through community social services or your place of worship.

It is great you have such wonderful care as Johns Hopkins! Perhaps a social worker there might have suggestions of resources for you? Maybe they can direct you to a scleroderma support group in your area. That is a good place to network with others. Take good care of yourself.

Sending many hugs and blessings your way,