My name is Donna and I live in New York. After reading many other posts online, I want to share my story, because maybe it will give hope to some of you...and a laugh to others. Just a warning....I tend to inject dry humor into my writing, so if I seem sarcastic sometimes, please smile.

I'm 54 and have had systemic scleroderma for about 34 years now. I spent years going to doctors, specialists, hospitals, undergoing zillions of tests, but nobody ever came up with a clear diagnosis. Instead, they treated me symptomatically....a pill for this, a med for that, and God-knows-what for whatever else they didn't know. Modern medicine really is a miracle, all right....it's a miracle they don't kill you.

In February 1997, my husband (63) died very suddenly; he suffered a pulmonary embolism at home and was dead 4 hours later in the ER. A few months later, I was feeling worse than usual, so I went to my PCP, who said it was probably from the trauma and stress of losing my husband of 23 years so suddenly. I told him that this was not stress....my fingers had swelled up from a ring size 6 to size 9 inside of a week.

I underwent a bunch of tests, but everything was normal. Well, maybe the tests weren't looking for the right thing.

I started doing some research in autoimmune diseases, because I had been tested for lupus several times in the past but to no avail. I had seen "For Hope" on TV with my husband just a few weeks before he died; I remembered that many of my symptoms were similar, but I wasn't going to run to the doctor because of a movie. But I was tired of being perceived as a hypochondriac, when I knew something was very wrong with my body.

I contacted the Scleroderma Foundation, took all the info to my doctor, and told him that I had self-diagnosed systemic scleroderma. He said that it's very rare and that I was wrong; then he admitted that he had never seen the disease before, and didn't feel confident at being able to give a definite diagnosis. I told him that I wanted to see a rheumatologist who specializes in scleroderma. Guess what? I saw him and he confirmed my diagnosis; I think both to the embarrassment and relief of my PCP.

The prognosis was very bleak: I'd probably advance very quickly, and would need a nursing home or 24/7 care within 2 years or so (this was December 1997). I was advised to get rid of my dogs and plan to sell my house. Yeah, sure...48 years old....not me! However, being a fighter, I demanded that I be part of the treatment team, that I have equal voice in planning, and that I would call some of the shots. (Yeah, I'm a doctor's dream.....nightmare!) To make a long story short (well, at least a few volumes shorter than the Encyclopedia Britannica, anyhow), I was on methotrexate for 5.5 years; pills for the first year, followed by weekly injections for the next 4 years. (I stopped methotrexate in October 2003, and so far, so good.) After hearing about minocycline on the Internet in 1998, I convinced my PCP to prescribe minocycline for me when my rheum would not do it (it's just a form of tetracycline, an antibiotic). My rheum wasn't thrilled that I had circumvented him, but since it's my life and body suffering with this nasty disease, I feel that I have the right to request unproven and/or unapproved treatments, because with the gloomy prognosis I was facing, my mantra became "If it can't kill me, I want to try it."

Not too shabby.....it only took me 27 years to get a proper diagnosis....and I'm still hanging in there and doing much better than they ever anticipated. I now take 21 meds a day, but no more chemo....I weaned myself off of 31 years of oral Prednisone (1970-2001)....still have hands that are mainly for show (ugly, gnarled, can't grasp or straighten out).....but I've reclaimed as much of my life as possible.

What really blew my doctors away was when I started dating, in late 1998, and then.....SIT DOWN.....I remarried! My rheum was amazed anyone would date me, what with scleroderma doing its number on me....and I thought he was going to faint when I told him that I had gotten married a year later (1999).

Getting married was a present I gave to myself, and probably the smartest choice I could have made. My husband knew that the future was uncertain but he's in it for the long-term. He knows that some days I can do OK, others I can hardly do anything for myself. I'm as independent as I can be, but I've learned to ask for help when I need it. The frustration of no longer being self-sufficient brings me to tears sometimes, but then I count my blessings for what I do have.

My body will never get any prizes, but I'll keep it as long as I can. At least it works fairly well. OK, on "good" days, it works fairly well...."good" being the days when I can swallow without choking, pick up a glass of water without dropping it, dress myself without too much assistance, and take care of all my dogs and bunnies before they start picketing for their food.

I maintain a positive attitude, rely on my sense of humor to get me through the good and bad times, and avoid people who are negative or bring me down. (Yes, I've ended certain relationships because I need UP people in my life, not those who only see the down side of life.) I think most importantly, I don't preceive myself as "sick" with scleroderma; if I say I'm sick, I'd be curled up in a corner crying all day. I choose to say, "I have medical problems and I'm dealing with them the best I can, period."

Hey, I don't know how long I'm going to live, but neither does anyone else on this planet. I'm going to live my life the best I can until I die.....which I hope is another 30-40 years. Life is for the living....and I'm living each day!

I'd like to hear from those who want to share. Being able to talk about this disease with others makes the burden a bit easier to endure. Wishing you blue skies and bright sunny days.

When contacting me, please type SCLERODERMA in subject line.
Otherwise, your email may be deleted as spam/junkmail. Thank you.