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nikpik

I'm New to the Site, but have had scleroderma for 20 years.

4 posts in this topic

Hello~

 

I have had lupus and scleroderma and Raynaud's and CREST and pulmonary fibrosis and now I've been hit with pulmonary hypertension. I started Remodulin sub-q last month. I've been off of work since then.

 

I'm looking to join a support group, or find friends, or anything to help me through this.

 

I am 37 years old, been happily married for 11 years, have a daughter who is nine, and a son who is 7. I am a bank officer at a small community bank, and manage the bookkeeping dept. I love my job. I intend to go back.

 

Thanks!

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Nikpik,

You have found a great place to come for support and answers. It is reassuring to hear that you have had scleroderma for 20 years. I have diffuse scleroderma and have had it for five years. It is not aLways easy to deal with so I admire your determination.

 

miocean


ISN Artist

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Hello Nikpik (Love the name!)

Welcome to the Sclero Forums. WOW - 20 years - yes, that is reassuring to all of us here! I'm sure you have a lot to offer. Hopefully, we can help you out as well.

 

I'm sorry to read about your recent diagnosis of Pulmonary Hypertension (PH). I was diagnosed with PH fall of 2006 and was started on Bosentan immediately. My PA pressure dropped back into the 20's (basically normal) within a year. I started at a pressure of 45 which isn't that high comparatively. My O2 levels still drop when I exercise or exert myself too much, so I do use oxygen for those activities. Otherwise, the medication and oxygen seem to have allowed me to manage quite well. I'm retired but I have my own home business and work 20 - 25 hours a week in and out of the house (a few meetings with clients here and there). So life does go on even after scleroderma and PAH diagnoses. We do have a section on Coping with Scleroderma. You seem to have done that quite well, but we all need to revisit some ideas for stress management and anxiety reduction once in a while.

 

Also, there is an organization called Sure Steps that is a support website for pulmonary hypertension patients. I have found the site to be quite helpful. Lots of good information. Please click on the link I provided and check it out. I hope it helps.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hello Nikpik,

 

Welcome! We'll you've found the right place! I'm sorry you have numerous aspects of ill health. Sure makes life a challenge. You'll probably have a lot of great information, and experience to share with us here. I look forward to knowing you better.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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