Before I begin my story, I would like to share with all of you that throughout the course of my disease, I have never been able to sit down and write my thought and feelings about this disease I have. I don't know exactly why that is--I guess it was just too painful. But now I know that is now or never, so here goes!
My name is Margie Ann Diamon. I am 43-year old wife and mother of three boys ages 20,17 and 11. My story begins in August of 1993. At that time in my life I guess most people would have considered me very successful. I had a good job working for the State of Michigan supervising 11 people. I was very active in my church, including playing the piano every Sunday morning. I also coached two soccer teams. Looking back on my life, I guess I was pretty "stressed out" but at the same time I was always looking to prove that I was the best at everything I did.
In the Summer of 1993 I began to notice that my right index finger was cold most of the time and the skin was tight. In addition to this, food began sticking in my throat and my hands felt like they were swollen all of the time. At the time, these things did not seem like much at all, but on August 23 I became horribly ill. It seemed to hit me all of a sudden. I became so weak and tired, with terrible joint pain, and I could scarcely move. I had diarrhea constantly and was unable to go to work. In fact, I never did go back to work.
I began by seeing my "primary care physician", a wonderful, compassionate doctor. He was uncertain what was going on, so he referred me to a Rheumatologist. Upon examination, he suspected Crest or Lupus. (By the way, years before this, I had a positive ANA test, at which time my doctor suggested that it may never amount to anything at all, so I had long since put it out of my head.) After running lab tests, my doctor finally diagnosed Scleroderma, but was unsure what kind I had.
My doctor prescribed Procardia for the Raynaud's, and an anti-inflammatory. I did not tolerate any kind of anti-inflammatory, because it only aggravated my sick stomach. Therefore, the pain continued. I visited the doctors on a regular basis, and the one thing I noticed was that they almost seemed sorry for me because of this horrible, incurable disease. My regular M.D. came right out and told me that I had to get used to the fact that I would probably be totally and permanent disabled the rest of my life. He even told me how lucky I was that my husband stuck by me because in many instances, the spouse cannot handle it and they have to leave.
Anyway, life went on and I tried to get used to my new way of life. One day my mother showed me an article that my uncle had found in the "Senior Times" Magazine. It was an article on ultra-violet light therapy. There was one small paragraph about how they were experimenting with a process called "photopheresis" for a disease called "Scleroderma". The process involved removing your blood in six cycles, each time spinning the blood in a centrifuge so that the white blood cells could be collected until the end of the treatment, at which time a medication called Psoralen was added and an ultra-violet light would be turned on to activate the medication. For some reason, this particular treatment sounded like something I would like to try.
During a visit to my Rheumatologist, he suggested that I might be referred to the University of Pittsburg because of their extensive work with patients with Scleroderma. He arranged for me to go there and my wonderful parents went with me. Dr. Virginia Steen examined me and my medical records, and she confirmed a diagosis of Diffuse Scleroderma. She suggested some possible treatments including D-Pennacillimine and Photopheresis. When I went back home, I asked my Rheumatologist about the Photopheresis, and he arranged for me to participate in a Research Study being conducted at Henry Ford Hospital in Detroit, MI.
In order to be accepted into the study, you have to meet certain criteria, such as having the diffuse variety of the disease, never having had any other treatments, and having been diagnosed within the previous year. It seems that I met all of the criteria, and I was accepted.
The study was a double-blinded study, and that meant that there was 50/50 chance that I would be getting a placebo. There were so many tests needed, including blood work, pulmonary functions tests, etc. Finally, my first treatments were scheduled. The most difficult part about the treatments was that I had to be blind-folded. I guess it was because I was not supposed to see if the ultra-violet light was turned on or not. Also, by this time my veins were not holding up very well, and each treatment required many attempts to find a vein that would hold up. It became quite painful, especially being blind-folded and not able to see what was happening.
Regular biopsies were taken as a part of the study, and my skin was so hard and thick, it was difficult for the needles to penetrate my skin. By the end of the research study, my skin had softened considerably and I felt a little better. Because I had participated in the study for over a year and had possibly received a placebo, the drug company sponsoring the study offered me a year of treatment for free. As it turned out, they went to my insurance company, Physician's Health Plan, and asked for them to pay for the treatments (at a cost of about $6500 per month). By the grace of God, they approved payment. In June of 1996, I began a second course of treatments, but not before they had attempted on three separate visits to find a vein that would hold up.
Each day they must have attempted 5-10 times, in various locations on my arms, to tap into a vein. The main problem was that the needles they needed to use were quite large, and my veins were impossible to find and/or sustain a blood flow. Anyway, they finally recommended that I have a shunt surgically implanted in my upper left arm. This allowed them immediate access to my blood in the same way as a kidney dialysis patients After this very unpleasant procedure, I was finally ready to begin treatments again. My wonderful husband and parents take turns driving me there and back and-- patiently wait for me. (I continually thank God for my family and friends who have helped me through this difficult time.)
Now, I continue to travel to Detroit (about 3 hours away) two days a month for my treatments. I have not noticed any improvement this time around, but I am beginning to think that a lot of this is because my attitude has changed. When I began the treatments initially, I just knew that they were going to cure me. I had no other choice but to think that. I never asked "why me, God", but instead, "Why not me". After all, I am no better or worse than anyone else. But lately I notice that I am much more discouraged. That is why I am writing this story. I am hoping that I can shake up my "bad attitude".
I still have a problem with cold hands and feet. I have terrible heartburn and reflux problems, which are somewhat controlled by medication. My body hurts so badly some days, that I am taking pain medicine and fear I am becoming addicted to it. In fact, I cannot get to sleep at night without taking it. I still am cursed with chronic diarrhea, which I can control with medication somewhat, but I never know when and where it will strike.
I have great difficulty breathing sometimes, especially after walking up a flight of stairs or exerting myself in any way. Pulmonary functions tests seem to indicate that I have a decreased capacity to diffuse my oxygen to the rest of my body, thus the shortness of breath. However, a recent chest x-ray does not show fibrosis in my lungs. For that I am very thankful.
My skin is softer than it used to be, but inside of me always feels tight and sore. In fact, I think I clench my teeth constantly because my jaw is so tight. I attend church most weeks, but aside from that all I have been doing lately is knitting--it hurts like heck, but it gives me something to show for my time.
I am receiving Social Security Disability and worry constantly that they will not continue giving it to me. A good friend of mine with Scleroderma and similar symptoms to mine has been unable to receive SSD even though she is unable to work. Other ladies in my support group have not even tried to apply for Social Security because they cannot afford to quit work. So all of these things weigh on my mind until I am almost neurotic about it.
In short, I am a physical and mental wreck. I do not want to be this way forever. I truly want to believe I can get better, but my heart is not in it lately. Most people believe I have a wonderful attitude, but they do not see me as I am most of the time. More than anything, I long to have my old positive attitude back and don't want to give up.
I have given a great deal of thought to the various treatments that have and are being tried to cure this disease. I have tried numerous this including "juicing and vitamin supplements", and even seeing a Shaman. I have come to the conclusion that perhaps there is no right or wrong answer for each of us. With the help of our friends, family and our heavenly Father, we must seek and find our own path to travel.
If you believe in your heart that a treatment will work, then I believe it can work. The secret is to keep on believing and never giving up. It is only when we give up hope that we resign ourselves to a life of pain and sickness. By combining our faith with a sensible diet and health regime that all people, healthy or sick should follow, that we can and will find a life that is truly worth living. The letters I have read on the Internet have given me much encouragement. From this day forward, I resolve to pray more ("Let Go and Let God"), worry less, and focus on the good in my life instead of on my Scleroderma and its many symptoms every waking moment. God Bless you all!! Margie Ann Diamon
The day I found the web-site, "I Have Scleroderma" was the day that my life took a turn for the better. As I wrote in the beginning of my story, I have never been good about writing down my thoughts and feelings. Although I dearly love to write stories, the thought of writing about myself was a little too scary for me. When I finally decided to write "my story", I typed it and sent it without even proofreading it so I could not change my mind. Since that day, my life has been filled with limitless possibilites via the Internet.
The website provided me an avenue to travel all over the world without leaving my home. I have talked to people in Australia, South Africa, and throughout the United States. All of these people have one thing in common with me--Scleroderma. The dreaded disease that once brought me so much pain, has now provided me with a wealth that cannot be measured. The friendships I have formed are such an integral part of my life that I cannot imagine what life was like before the Internet
I am still experiencing the same symptoms as I was when I first wrote my story. My battle to maintain my positive attitude has been won, for the most part. I have many more good days than bad, and when it gets too bad, I turn on my computer and begin my travels down the "information highway".
I continue my monthly travels to Detroit for Photopheresis treatments, and plan to do so as long as my insurance continues to pay. When they stop paying, I will begin to explore another option. As anyone knows who "surfs the net" there are options out there. The path I choose next is between me and God.
I am now very active in a local United Scleroderma Foundation Support group. I type the newsletters and am in the process of organizing a fund-raising event for June. My church has agreed to support our local Support Group much as they would a local missionary. They will sponsor a concert that is going to be put on by my good friend, Lynn, and myself. I love to play piano and sing, and this will be an opportunity to spread the word of God and the word about Scleroderma at the same time. What could be better?
I would like to say that life is very good. A diagnosis of Scleroderma does not mean that we have to quit living. It just means that we have to learn to adjust our lifestyle. I have learned to take one day at a time (sometimes one moment at a time) and to make the best of what I have. In so many ways having Scleroderma has been a blessing to me. I now have time to actually "smell the roses" not to not glance at them in passint. Some people never experience that gift because they are too busy.
The friendships I have formed because of my disease have become invaluable. I thank God for leading me to the net. The possibilites for me are now limitless. God bless all who read these words.
You can reach me at: diamon@net-link.net
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