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Update on Me

Posted by barefut , 04 July 2010 · 980 views

After 4 1/2 years on it, I took my last dose of Cellcept this morning. I started Azathioprine (Imuran) a few months ago and doctor said it's time now to quit the Cellcept since my lungs have remained stable and my skin "looks good". Its nice to be eliminating a med for a change.

The Azathioprine is supposed to be able to do a better job at handling my myositis - or at least that's what the plan is. Hard to tell any difference yet since I am still (again) tapering off of Prednisone and am currently at 3mgs. I started tapering from 5mg and am going down by 1mg a month. I think I may need to taper even slower as I wake up every morning feeling like I've been run over by a bus.

Today my hands are painful, stiff and swollen. My fingers swell up to the point where the skin around my nail folds cracks and bleeds. Amazing how such a tiny thing could hurt so much. The rest of me is in hobble mode and battling some killer fatigue.

In mid August I am having an upper gastrointestinal endoscopy with a possible esophageal stretch done at the same time. Some of my meds have been getting stuck and dissolving in my throat.

I discovered that I am not eligible for SSI due to lack of "work credits". I must have worked at least 5 out of the last 10 years and I have been stay at home mom most of that time, only working or I should say, only having an employer, for the past 2 1/2 years.

I have 4 months left to appeal my long term disability denial from the private insurance company my employer provided. I have an attorney willing to take my case on contingency but they will take 40% of any monthly payments (a minimum of $10,000). My approximate monthly income would be 60% of my gross wages and then 60% of that, leaving me with about $800/mo. I guess its better than a poke in the eye, especially since I am still receiving no child support and most likely never will.

I do hope that you will appeal the denial. I think I would also look for another attorney, that's pricey. xoxoxo
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