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Jewell: Diffuse Progressive Systemic Sclerosis

My goodness, I wish I had known about this web site a long time ago!

Mountain Scene by Ione Bridgman, ISN Artist When I think back, I had been getting sick for a long time. I just did not know it. I put the fatigue, headaches, joint pain and body pain down to, "I am just working too much."

For years I would be sick off and on but prided myself on not missing a day of work. However, I started doing a fair bit of contract work which meant I would be working for anywhere from a day to eleven or more months and increasingly, at the end of the contracts, I would just crash. Again, I put it down to working which I loved to do. Looking back, those were the, ?taps on the shoulder? I should have been paying attention to. Instead I just kept on going; sometimes work-sharing or working shorter contracts. The reality was, I loved my work and I think that helped me to stay in denial.

I then took a position where I would no longer be doing ongoing contract work all the time although I still did some and was in the midst of forming a consulting company with some friends before I got sick. This would mean taking contracts while still working a full-time job. In fact we just got our first big contract when I got sick. I cannot tell you how disappointed I was over this. I knew I was getting older and it was time to stay in one place and settle down some, but I still wanted variety in what I did and that is what I hoped having a consulting company would serve. Yet I would still have a position with regular hours as well as holidays and benefits.

Where I had prided myself on never missing a day of work from sickness, I now caught everything that was going around and for the first time ever I was not only missing days, I was missing many days, sometimes using up a lot of sick days. This was just not like me. I often felt awful but did not want to tell anyone as somehow I felt it made my life more vulnerable. I did not want someone telling me that it was time to find a new line of work.

One day in April of 1996, I woke up and literally could not move. I phoned into the office and told them that and then said I would be there by the afternoon. I remember thinking about how much work I needed to get done. By the time the afternoon rolled around, I knew I would not be able to work and phoned into work again. To make a long story short, I did this for three days in a row before I knew I was not getting up at all for awhile.

I saw two specialists, a dermatologist and a rheumatologist, in the beginning, one referring me again to the other. I was diagnosed with chronic fatigue syndrome (CFS), fibromyalgia and Raynaud's. At the time, I could not understand why I was not being diagnosed with lupus as my symptoms were so like those I had heard of with lupus sufferers and I had a positive ANA. (I still believe I have a lupus overlap but no one has agreed with that yet.) Both of my doctors were very good, but one retired after I had been seeing him for some time and the other became ill with cancer, so unfortunately, I found it was time to look for another specialist.

In the meantime, I had been doing some research on the Internet and came across a page that spoke about silicone breast implants and the illness attached to them. I had mine put in shortly after nursing my last child (somewhere like twenty years prior) and had been told that they would last a lifetime. I became very interested in 1992 when the United States Food and Drug Administration banned breast implants. (They have never actually been approved. The plastic surgeon told me that they would last forever and that I could even nurse a baby if I chose to.) I was wondering then if I should get mine taken out, but when subsequent stories by the manufacturers came out denying the evidence, and women came out in groups using my buzz word, "choice," I thought that maybe I had been overreacting as well. I certainly did not want to lose my breasts so I comfortably drifted into what I now know was denial.

Then I came across one web site that mentioned the symptoms most of the affected women were having. Seeing the symptoms all listed at one time like that and being only too acquainted with my own symptoms, my jaw dropped and I found myself sobbing for the first time since I had become ill. I had far more symptoms than what I saw on that page and had all but three of the symptoms on the page.

I went to see another specialist that I had heard was experienced with breast implants. In addition to what I had already been diagnosed with, he diagnosed me with a particular kind of arthritis called arthropathy. I had it pretty much throughout my whole body, including my backbone and my breastbone. He also diagnosed me with Sjogren's Syndrome, irritable bowel syndrome (IBS) and gastro-esophageal reflux disease (GERD). I had a bone density exam that showed I also have osteoporosis which was a result of having had a complete hysterectomy in my early thirties. I had the hysterectomy to counteract symptoms I had been having back then. The symptoms never went away though, and now I see the hysterectomy as being totally unnecessary at the time. In fact, prior to getting sick at all, there was a doctor who I saw for a short time who diagnosed me with emphysema. I did not believe it. In fact, at the time, I thought he was just trying to get me to quit smoking. I was a fool. Since then I have been diagnosed with chronic obstructive pulmonary disorder (COPD). I have also quit smoking after thirty-six years. It has been about two and a half years now of not smoking.

Around the time of having my breast implants taken out, the skin on my hands, arms, the front of my shoulders, chest, face, back, various parts of legs and hips, buttocks, sides, ribs and stomach became, itchy, inflamed, bloody in places from scratching, and hard. By that time, I had been so downtrodden by illness, questions and problems with an insurance company, and just everything, that I did not even want to get it checked out. It was my neighbor, who is an intensive care unit (ICU) nurse who said it was important and that I should get it checked out.

I was sent to a dermatologist whom my primary doctor, who has been wonderful throughout this process and I cannot imagine going through all this without him, respects very much. He took a look at my laboratory tests and history and just kept on asking question after question, not allowing me to swerve off even a little bit. At the end of his examination he told me that I have progressive systemic sclerosis of the diffuse variety. He said it was very serious and that I should not take it lightly at all. He told me that if I developed any other symptoms, I should jump up and down and scream until I got attention if I was not being taken seriously. He also said he was going to phone my primary doctor right then (whom I was on my way to see) and tell him how important this was, and recommended that I be referred to a highly regarded rheumatologist/internist.

I went to see him and he agreed with the diagnosis of the dermatologist, and also said the echocardiogram indicated that there is slight thickening on the pericardial sac of my heart and possible pericardial effusion. From there, he referred me back to the rheumatologist I had been seeing prior to him. I am still due for another echocardiogram and I have just finished getting a high-resolution cat scan of my lungs.

When I had the breast implants "ex planted", sure enough, they were both ruptured and a calcinosis was found in the breast tissue, something that people with scleroderma know a lot about.

I have had attacks that have landed me in the hospital at times that were both esophageal and angina. I am starting to get to know the difference between the two of them (I think). I get these attacks, though, at rest so MIBI scans will not show up what is happening as they rely on activity and stress on the heart. Both kinds respond to nitroglycerin. I have found that if I wear a nitroglycerin patch to bed at night, I get fewer attacks. This is the patch I am suppose to be wearing during the day, but the way I see it, I am more protected with Verapramil during the day. I also use nitroglycerin during the day if I feel something coming on. If I am woken up by one of them it is usually well along and much more painful as well as much more scary. What I am trying to say here is that I made up my own mind to put the nitroglycerin patch on at bedtime as opposed to during the day. I believe this choice of mine has significantly cut down the amount of attacks I have been getting.

Not that long ago I was put on a course of Cyclophosphamide. My blood was being closely monitored during this time and I got a call from my rheumatologist at one point saying that he was concerned about my white blood cell count and suggested that I get off the Cyclophosphamide for three days completely, and then start again at another dosage. That went on until the next blood tests came back and my doctor phoned me again and wanted me to get in and see him as soon as possible. The problem was that I was too sick to go! In fact, I am often too sick to go to the doctor. That is why I build up my energy so that I can make my doctors appointments! During that time my doctor was scared that my kidneys were going to fail.

It was ISN's Sherrill Knaggs who helped me throughout this period of time. I would have been so scared without her. We emailed each other back and forth as I went through my blood tests. Because Sherrill's kidneys had failed, she knew how to handle me. I say as often as I can, "Thank you, Sherrill." She held my hand throughout the whole, awful and scary ordeal. The ISN's Sclero Forums Message Board has helped me immensely. People are kind and knowledgeable. I keep on learning and feel as though I am even more up to date on the latest research than most doctors.

I find that the worst part about this disease is the unpredictability of the symptoms from day to day. Then the times in between when you are nearing a new diagnostic part of the disease and the uncertainty of tests or whether they will show up something specific to scleroderma. For example, sometimes things do not show up on tests, yet you know something is wrong. Many doctors know so little about the disease, so we, as patients, have to really keep on top of what is happening regarding this disease with the research and with other people. That is why this forum of scleroderma patients from all over the world is so important! We keep ourselves well informed and well supported to boot! There is no cure yet, but by working together we can make it happen, if not for ourselves, for the younger people.

I think this forum is very important in advocating for and helping each other that we learn enough to advocate on behalf of ourselves during these very uncertain times although when and how to treat the disease is still somewhat of a mystery.

My goodness, I wish I had known about this web site a long time ago because whether one is diagnosed with scleroderma or not as there is a lot of ambiguity in diagnostic efforts in Autoimmune Diseases and/or connective tissue diseases. It seems you know you are supposed to be here (the ISN web site) when what is happening to people here is also part of your own story. I am also grateful that technology is upon us. This is how technology should be working: People all over the world helping other people with the same challenges, again, all around the globe. For those who are too ill to even make it on a continual basis to support groups, which are rare for such a rare disease, this is a wonderful alternative. Thank you,

Lastly, I would like to state very firmly that it is my belief after a good deal of research that the scleroderma I have has been caused by silicone implants. It is also my belief that in years to come, this will be as accepted as cigarettes causing cancer and asbestos causing asbestosis/cancer. The same public relations campaigns have been run with all of theses agents. There may be genetic predispositions. But how can we not have genetic dispositions? We have human bodies that are healthy and wonderful in their complexity, but many toxic agents can hurt that body only because it is human flesh; how can we possibly be immune to all that poison?

I am glad to be part of a scleroderma community because it has helped me so much! I am just not glad about the way I got here. I pray these implants are not let back on the market. If they are, I pray for the lives of the women they will impact.

To Contact the Author

New email address needed 08-06-09 SLE
Old Email Prefix: jeweltara2000
Story posted 10-9-03
Story edited 10-31-03 SLE

Story Artist: Ione Bridgman
Story Editor: Judith Devlin
Autoimmune Diseases
Chronic Fatigue Syndrome (CFS)
Diffuse Scleroderma
Irritable Bowel Syndrome
Sclero Forums
Silicone Breast Implants

ISN Artist: Ione Bridgman

Ione BridgmanISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our Voices of Scleroderma Book Series.

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!

Go to Jill: CREST Scleroderma and Sjögren's

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

International Scleroderma Network (ISN)