Later that year I married John and continued leading a normal life. That is, until about March of 1993. That was when I finally received a diagnosis of scleroderma from a dermatologist. I never stopped checking with miscellaneous doctors because I knew something was not right. My skin was itchy, my fingers were swollen and my joints began to ache.
One of my biggest concerns, at that time, was that I was losing control of my leg muscles. They felt weak and I actually had trouble sitting on the toilet without using hand rails. Fatigue followed, and then I had trouble breathing. I was put in the hospital to check out the breathing problems.
This was when they found excessive fluid in the sack around my heart. The abundance of fluid that was not draining as it should have been was constricting my heart, hence, the breathing problems. I believe they called this pericarditis. I was immediately sent for surgery where some tubes were attached to the sack with the hope that once the fluid was drained, it would not accumulate again. Unfortunately, it did and I stayed attached to the tubes for 12 days until the doctors felt it was safe to allow my own body to take over.
Since this major surgery, I have found that my kidneys have sustained some damage and have been advised not to attempt a pregnancy. My kidneys and body probably could not handle the stress and there were concerns that I could not carry a fetus to full term. This was very discouraging as my husband and I planned on having children. We married each other later in life and did not have a lot of time to wait. Now, we do not plan to have our own. This was a hard blow for both of us.
The major problems with my kidneys began with high blood pressure. This is now controlled with Vasotec, however, the damage has been done.
My right hand has some deformity because of problems with the joints, but the deformity is minor. My left hand has escaped this as I began taking Prednisone, Methotrexate, and Colchicine in time. They have helped me fight this disease and I no longer take the Colchicine nor do I have muscle weakness any longer.
I also suffer with Raynaud's Phenomenon but seem to have a better handle on that and take Procardia to help. I never leave the house in the winter without warm clothes and gloves. When I really need to, I put my hands and/or feet in hot water and that feels soooo good! The problem there is I can tolerate very hot water and cannot feel a burn very quickly. I have to be careful. The same holds true with small cuts on my hands. I can cut myself but not know it until sometime later when it begins to sting because dirt or something has gotten to the wound. These are things I live and deal with because of my skin involvement.
Other than that, I take Prilosec for stomach problems and may be having some surgery soon to help dilate the opening to my stomach. It closes easily and sometimes I have trouble eating.
Needless to say, I have dealt with some depression through all of this and have taken Zoloft for awhile. Honestly, though, I really have a good outlook, work full time, have a good life in Lexington, KY with my husband, pet dog and friends. I do not dwell on the negative and accept this cross to bear.
I exercise some what regularly (when the fatigue does not stop me) and I try very hard to take care of myself. I do not want to have any more setbacks (do any of us?), but I know there are no guarantees with this disease.
I would like very much to correspond with anyone that is interested. I do ask, however, that we not only share our stories and lives, but continue to stay positive. There is a lot of research and subsequent answers to our questions. We are getting closer to a cure and need to keep getting information about scleroderma out to those that are not familiar with it. Education and awareness is very important and, in numbers rather than one, we can make a difference! I hope the best for you and look forward to hearing your stories.
Update, November 1998
It has now been over a year since I shared my story and I have a lot of positive news to share.
First, the excessive fluid around my heart has not come back and I have not experienced further problems with this. I still take the same meds to keep me stabilized - procardia, prednisone, methotrexate, zoloft and vasotec. I also now take minocycline for skin rashes on my face and supplements to help keep me strong - iron, multi-vitamin, calcium, and garlic. My kidneys are functioning well, my stomach is "normal," and there have been no great skin changes in the last year. About the only discomfort I occassionly feel is joint pain in my hands, knees, and feet. This has been basically a nuisance but nothing worse. Because of my good fortune, I have tried to get off some of the meds, mainly methotrexate and prednisone. Unfortunately, I had an immediate drop in strength and felt fatigued. I just could not go backwards as I have been doing so well for so long. I don't know what the future with my medications holds for me. I'm just taking care of today right now.
I do exercise almost daily and, although have gained some weight in the last year, I try to keep it under control with the exercise and a healthy diet. I think the meds make losing weight a tougher challenge for me right now, I'm not sure.
The best news of all, however, is the addition to our family. My husband and I adopted a beautiful baby boy a year ago. He has been such a joy for us and I don't know what I did without him all those years. His name is Daniel and he is now 14 months old. Because of this blessing, I am more determined than ever to keep up my strength, hence, my hesitation to experiment with stopping the medications.
I am not working outside of the home currently but am working on a master's degree in education and plan to graduate next May. This has been a fun program and I look forward to teaching again when Daniel is a little older.
So, in a nutshell, you can say that even with the challenge of scleroderma, I am living a normal life. I am a wife, mother, student, teacher, and a determined woman. That is, determined to succeed and be as healthy and happy as I can. I do this not only for myself, but for my husband and son. This is not to say that every day is easy and I would never try say otherwise; however, there have been very good days, weeks, even months and this reality gives me hope for a bright future. I pray every day that my good fortune will continue and that the worst part of having scleroderma is behind me. I pray the same for all of you.
Please continue sharing your stories and writing to me if you so desire. Together, we are getting through this.
Denise LaFave: dlafave@mail.gcnet.net
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UPDATE!
Hi, my name is Denise and this is the second story I have shared about my illness. I was 39 the first time and am now almost 49, so you can consider this an update. Please take some time to read the first one, which gives a lot of information about my early days with scleroderma. Life has not always been easy with scleroderma, but I do feel blessed that I have done so well all this time. My son, Daniel, is now 9 years old. I love him beyond measure and he keeps me going, but I don't know how I would do it without my husband, John. I work fulltime as a junior high teacher right now and I don't know how much longer I can handle it. I get so tired, even with going to bed at 9:00 most evenings, I still wake up fatigued and have little energy for anything other than work.
As mentioned in my last sharing, I never had children of my own. I was advised against it due to potential complications from scleroderma. Adopting Daniel was the best thing we could have done, but I have always wished we had adopted a sibling for him. This is my one regret, but my husband was afraid. He knew that my illness was unpredictable and was afraid of being left a widower with 2 children. He just didn't feel he could handle it. I can understand this. He definitely does more than his share of cleaning, cooking, taking care of the house, his job, our son and me. I always do what I can, but there are times when I just have nothing left. I am going through that right now. When I get sick, like a cold or something, it gets ahold of me and won't let go. I am going on my 3rd week of one of these right now and am very frustrated. I also get very depressed during these times. I am writing this now as a release of some of these frustrations, hoping for a better day tomorrow.
I was diagnosed in 1993, but began having symptoms a year earlier. I was very sick for that year and could not get any doctors to help me. No one would commit to stating that I had scleroderma; it was always just mentioned as a possiblility. I finally received a diagnosis from a dermatologist who recognized some of my symptoms because his mother had the disease. That's when things began to change.
I have been on many medications throughout the years, some not so helpful, others very much so. Right now, I take methotrexate (overall illness), prilosec (GERD), vasotec (high blood pressure), nifedipine (reynaud's), enbrel (for pain and the disease) folic acid and a multi vitamin, and 2 meds for depression. I had dealt with depression even before being ill, and it has continued to be a problem for me. I no longer take prednisone and I'm happy about that. Prednisone caused me to gain weight and I was very uncomfortable with that. The enbrel is an injection that is normally used for rheumatoid arthritis and my doctor felt it may help my scleroderma. This is really an experiment, but it has helped ease some pain.
Some of the more recent changes I have noticed this past year are: the fingers in my left hand have bent (the right hand has been like this for many years), the skin on my hands is very, very dry, to the point of hurting, I have spots on my face which are small broken blood vessels. I'm told these will not go away and I am very self-conscience about them when I do not wear make-up. I also am noticing some numbness in my right hand, some back pain due to problems with the arthritis in my feet, slow healing of cuts on my skin and knee pain that comes and goes. Of course, the fatigue I have experienced for years never goes away and gets even worse sometimes due to my job.
There are so many people who live with illnesses that I hate to feel sorry for myself. I try very much to live a normal life and not focus on being ill. I do work fulltime, like I said before. Teaching is a demanding job, junior high even more so. I can't imagine doing this for too many more years. I'm just too tired. The problem is that I want to work. I don't know what the future holds, but I am hoping to find a well-paying part-time job down the line.
When I think about some of my internal problems, I really wonder how long I have. I have some kidney and lung involvement, a lot of joint pain and tightness of skin, and a slow gi tract, which causes discomfort at times. On a positive note, my heart is great, I do not have trouble swallowing. My biggest concern is with kidneys. I am really afraid of that becoming a bigger issue. So, I pray for strength and many more good years.
I am going to end this story with stating that, regardless of how low I feel right now, I am living a good life. I have a family that loves me and that I love dearly, many friends, am intelligent and possess many skills. I have faith that God is with me, always helping me to go forward. I normally walk around with a smile on my face and make the best of my situation. I do not like dealing with the symptoms of scleroderma, but I do not focus on the negative either. What can I do, but my best? Living with illness is like a roller coaster. Sometimes I feel up and ready for anything, other times I am down and scared. I think this is normal and the good times always help me through the bad. I think that's how I navigate my life around this illness.
I would be very happy to hear from others who are dealing with similar issues. Or, if you just need to "talk" with someone else who understands scleroderma, please write.
November, 2006