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Bill T: Diffuse Scleroderma

During this time is when I noticed that I was having more and more difficulties with standing from seated position.

Logs by the Cabin by Shelley EnszWhen I became sick, I began the experience of severe heartburn. I was eating Rolaids like candy. I thought it was that I had given myself ulcers, from my partying. I would regurgitate to fit more into my system. I soon began to experience my first, so I thought, symptoms of scleroderma. My hands were swelling, which was making it more difficult for me to fully close my hands. This slightly hindered my profession, as I was a welder; and have partaken with some underwater welding, while in Commercial Diving School. My primary care provider, at that point in time cited the reason was because I, "use vibratory tools."

Maybe a year later I needed to have an abdominal hernia repaired. But prior to, I recall sweeping up the shop at the end of the work day and I'd felt out of breath and tired. When I was in OR, for pre-op testing, they discovered my hemoglobin level was so low: 5. I think they were surprised I was still walking around. I was then discharged and immediately taken in to the ER. That following week I underwent a barrage of testing. One of which was a secondary endoscopy. Initial one diagnosed, in error, a hiatal hernia. During second test they discovered the actual diagnosis should have been that there was a tear in my esophagus. They repaired it. Shortly thereafter they went back in to repair the abdominal hernia. This occurred between February and August 2008.

At the latter point is when I was discharged from work, from two periods of temporary disability, because I was no longer physically capable of enduring my job as a structural welder. My lack of mobility had already begun progressing, prior to my leaving for second operation - after returning from first. I was not as agile as I was before. That was back in August 2008.

I was diagnosed in July 2008 with Diffuse Scleroderma. I have consistently digressed since then, and have now been in my handicapped recliner, for the most part, since about July 2009. Around that time period my parents had gracefully come to visit, for my son's third birthday - as well as to help me here. My wife worked two jobs, thus being gone from house most of the week. I would be the one having to care for my son, basically on my own, as well as for myself.

While they were here, they came with me to my doctor's visit in June 2009. That time I fell to the floor. I was stepping out of the elevator to get to my appointment on time and unfortunately stutter stepped. I did not even have reaction time-mobility to attempt to prevent myself from falling. I made the attempt to brace my fall but, being so strength debilitated, could not prevent myself from crashing full weight-forehead first to the concrete floor. EMS attended me, but that would have been more expensive. So I elected to go right to my appointment, against her suggestion as well.

I am hard headed enough that I have sustained worse falls and nothing became of it, so I put an 'H' on my chest and handled that. They eventually left, going back to their country of Nicaragua, and were shortly thereafter called back, to grant me more help. During this time is when I noticed that I was having more and more difficulties with standing from seated position. I also noticed that I was having more and more difficulties with standing from toilet as well. I have a 4.5" riser-seat - with handles, atop of a 14" height of bowl rim. Now I have ordered a "Toilevator", a 3.5" base that gets placed under original toilet, thus adding more height. At this time said object is on back order with the company and I await its arrival. I have also ordered a grab bar, for the shower.

I cannot get myself up from a laying down position. Nor do I have the strength to stand from seated position, on edge of bed. I have either my wife or my mom help me with my medications, while I sit on the bowl. I cannot dress or undress myself, nor can I bathe myself. My boy helps me as he can, while he is here; Although he is a growing boy, thus being a hand full at times. My parents, mainly help me with him. My wife works now only one job. She has a difficult time dealing with what has occurred to my health. When she married me I was 5'7", maybe 205 lbs. - mostly muscle. Now I am down to about 150, last I was weighed - about one month ago; I can't even pick up my 35 - 40 lb. son. For the most part I sit at my handicapped recliner for most of the day into night. I can get myself to/from the toilet, hopefully on time or I leave trails. I can't cook for myself anymore, because I don't even have full strength to open a granola bar package for even just myself. My hands cramp up like crazy, when trying to open something that meticulous for me - now.

Recently my doctor informed me that my CPK reading has gotten better, since I have doubled on my intake of methotrexate: 2cc per week, self injected, with some difficulties. But now am hopeful to start on Enbrel, if allowed to/for me; so that I may possibly progress with my symptoms, instead of just sitting here like a "bump on a log".

To Contact the Author

Email: [email protected]
Story edited 10-17-09 JTD
Story posted 10-20-09 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
Diffuse Scleroderma
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ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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