He told me to go home, get my life in order as I had no more then 2 years to live. At the time of the diagnosis, I was a 46 years old single parent with an 18 year old mentally handicapped daughter and a very healthy, energetic 15 year old daughter. My two sons had `flown the coop' and were busy working. I didn't have a lot to get in order but did divide photos and decided who would get what of my personal objects.

I wonder if I had this disease long before I was diagnosed. Some of the reasons why I question this are:
1) In my 20's and early 30's I lost 4 baby girls and 1 baby boy. All of them were in my 7th month of pregnancy to full term and all of them for different reasons.
2) I joined a Curling team in 1978 but because my fingers became very painful and turned dark gray, I had to give it up.
3) In 1981, I noticed a lump on my neck. I also was losing weight, losing some hair and had a very rapid heart beat. I was diagnosed with Graves Disease. I was put in an isolated room at our hospital and given Radio Active Iodine to dissolve my Thyroid Gland.
4) The following year a calcium deposit settled on a nerve on my right shoulder causing excruciating pain. It eventually moved but left me with a frozen shoulder.
5) Shortly after this I got the same type of pain but this time in my left elbow. I worked hard at exercising my arm and eventually two small holes showed up in the elbow and calcium particles started coming out. I still have the two holes and when the calcium builds up, it comes out but there is no pain.
6) A few years ago I was told that I had Dry Eye Syndrome. I use Artificial Tears as needed.

I started going to a Rheumatologist in the summer of 1984. He put me on several drugs, two of them being D-penicilamine and Colchicine. Within two weeks of taking either of these drugs, I broke out in welts and had to stop taking them. I can't remember the names of the other drugs the doctor had me try but they certainly didn't help me.

Weeks went into months and then into years and I wasn't feeling too bad. I got on with my life doing what I love to do....volunteering for Special Olympics, visiting with friends and family and looking after precious grand children. In the cold months my finger tips got ulcers, discoloration and stiffness. The skin on my face stiffened but actually my health wasn't too bad for being in my fifties.

I was told when diagnosed with Scleroderma, that it is a stress related disease and that the symptoms will get worse if your life is not relatively calm. In the last 4 years, my life has been less then calm.

In 1991, one of my brothers was diagnosed with colon cancer and died in March, 1992. In March, 1993, my husband had a stroke and after two weeks in a coma, he died. March, 1994, my bowel perforated and in an emergency situation, I was operated on and given a colostomy. June of the same year, the doctors decided that they could reverse the operation and so, joined my bowel up.

By September, I was once again in a lot of pain so back to the operating room and another colostomy bag. Adhesions had formed on my colon and there was no opening. June 1995, was another trip to the operating room where once again the doctors were able to reverse the procedure and I am now, thankfully, colostomy bag free. When I was going through all of this, my twin brother was diagnosed with colon cancer and succumbed in September, 1995.

In the winter of 1995, my fingers became very painful with ulcers on all but my thumbs. The specialist I was sent to, had me put two cm of Nitrol 2% ointment (Nitroglycerin) at the web of each finger four times a day. He felt that if this didn't work, I would probably lose the tips of my fingers. Thankfully it worked. I used this ointment until the weather warmed up and have started to use it again as winter has begun.

In April of this year my breathing became labored and I was feeling very dizzy and light headed. I went to my family doctor and was told that my blood pressure was very high. He put me on Cardizem 180 mg (Diltiazem) twice daily. By July, my blood pressure had not come down and I still had many dizzy spells. I went to our hospitals emergency room where a Pulmonary Specialist examined me and gave me the news that I have Pulmonary Hypertension caused by the Scleroderma. He upped my Cardizem to 240 mg twice daily as well as putting me on Oxygen - 2 litres every second breath. The only time I can be without it is if I am sitting or lying down.

At the same time I was experiencing a lot of heart burn and was put on Cimetidine 600 mg (Tagamet) twice daily and Prepulsid 10 mg (Cisapride) four time daily. I have my esophagus checked every third month as I now have scarring in this area as well as a Hiatus Hernea.

I started getting angina in August and saw a Cardiologist. He has me taking Norfasc 5 mg (Amlodipine) once daily, Accupril 10 mg (Quinapril) once daily and a Nitro-Dur 0.8 patch (Nitroglycerin) for twelve hours of the day. I have had 2 Echo Cardiograms and I am on a waiting list for an Angiography.

I am also taking Furosemide 20 mg (Lasix) twice daily.

Because my disease at this time does not seem to be slowing down, my doctors, as a team asked me if I would be willing to try an immune suppressant drug. I feel that I really have nothing to lose so I am taking Cyclophosphamide 75 mg (Procytox) once daily. Other then a bit of nausea, there has been no real bad effects so far. My oxygen is now set at 3 litres every second breath.

I refuse to let this disease run my life. I have the support of a wonderful family and faithful friends who help me through any rough days I might have. My mentally handicapped daughter and I share a home and I am still volunteering for Special Olympics and really enjoying my grand children. The reason for writing all of this down is that it is good therapy for me and hopefully it will be helpful to someone else.

Thanks

Nora Cunningham: dcrawford@pinc.com

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Copyright © Nora Cunningham 1997