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Andrea

Hi, My name is Andrea and I'm 45 yrs old,from Moncton, NB, Canada. I was a nurse for 15 yrs and then worked for a publishing company for 5 yrs. Presently I am a sales and leasing consultant at a local Toyota dealer. I had been told many yrs ago that I have Raynaud's. Being a competitive swimmer, my finger and toes quite frequently were white. But it never went any further for yrs. Then about 5 yrs ago, the tip of my left index finger became very sore and started to turn black. Before I knew an ulcer developed on the tip. It was then that they realized that the raynauds was just the "R" in Systemic Schleroderma CREST Syndrome.

They had talked about Lupus. My niece has just been recently diagnosed with multiple sclerosis. Also a disease of the auto-immune system. Hmmmmm. Other things that had been happening to me over the years all of a sudden had become related. Dry mouth and eyes, reflux disease and rheumatoid arthritis. All of sudden they were tied it all together. Under the doctors care, the tip of my finger, within a just a few weeks, became necrotic. Very, very painful. The dr put me on heavy doses of adalat (blood pressure) and trental (Vasodilator). The pain was just unbearable at times. Couldn't sleep at night because of the throbbing and during the day had to keep my hand elevated or else the throbbing continued. And of course, Murphy's Law, what finger did I always bang.

After about 3 months, the finger started to heal, eventually the necrotic tissue fell off and the wound started to close. Thank god, I thought, it wasn't my right hand, as I am right handed. Well, before the wound had completely closed over, my nail bed on my right index finger started to get sore and turn black. Oh my god, here we go again, now its my writing hand. This one developed so fast and actually started to creep down towards my first knuckle. It was so bad that the only relief that I could get was when I was high on percs, just so that I could sleep the time away.

Anyway time has passed and both fingers and my mental being have healed as best they can, but my fingers remain very painful at times, especially since they will never completely heal. The dr's tell me I'm in remission right now, but they monitor my blood pressure frequently as it seems to be the trigger (high) and its detrimental that I keep my hands warm. The reason I'm sharing this with you tonight, is because of what I experienced at work today. When I started selling cars in August I was not told at all about having to go and clean the lot after heavy snowfalls.

I live on the snowbelt that comes thru NB. I have been dealing with it as best as possible wearing very warm mitts, sheepskin, but today it was -32 with the windchill, I refused to go out and stand around in the cold. Actually my dr told me not to. I have been slowly hinting around to my bosses that this is hard on me, but I am still usually the first one out on the lot to start the clean up. Today, it was just to cold. My better judgement. The next thing I see is my boss coming over to me and demanded that I go out on the lot. I tried to explain to him about my disease, but he would hear no part of it, and told me to do what I have to do, but I also had a job to do. Needless to say, I did what I was told and then suffered all day with a feeling of frostbite to 4 of my fingers. Ever since the snow has started to fall, now for about a month, I wake up with this dilemma every day. I know its part of my job (and I love my job), but I thought that just once they let me bow out. The rest of the staff understood. Anyway, I'm going to talk to my dr in the morning.

Its really neat that I found this sight. Is it possible there is chat room. I find it hard sometimes to talk to people about this as they don't understand. So, is there anyone out there that lives in the northern hemisphere that is faced with this dilemma and would like to chat, e-mail me.

Update - August 2003:

Alot has happened since I wrote that story. I haven't had a chance to join the chat for some time now. I have relocated to beautiful Vancouver, British Columbia where I might add, it doesn't snow or get cold. I brushed Toyota off and have now found employment in my field. I am an accountant and Office Manager. I've also joined my family, I have 2 brothers that live here. I was also very lucky in finding a doctor who has knowledge of Scleroderma. My well being is starting to improve, but like everything, it will take some time for me to regain my confidence. I look forward to Jan & Feb when I'll no longer have to shovel snow.

I took the initiative and drove across Canada and I must say, WOW, what a country we live in. I believe that you live in the states. If you ever get the chance you must see the Rockies. I haven't shut my mouth since I've arrived here.

THX Andrea - bonnabourque@hotmail.com