I began having issues with my hands in April of 2011. I would wake up in the early morning hours and my hands would be asleep. I had to hold them in the air for it to go away. I thought I had Carpal Tunnel........
A couple of weeks later I noticed my feet, elbows, and knees were very swollen. I had swelling over most of my body, but the most swelling and pain was in my hands. Because most of my body was swollen, I had other issues. It was difficult to move my hands, arms, and knees. Kneeling was out of the question. My hands were becoming extremely sensitive and harder to use. Being swollen was causing me to be bloated and I could not fit in to clothse or shoes. I was down to wearing one pair of shoes that was comfortable on my feet.
In June, 2011, I began to see a general praction doctor who was very concerned and wanted to help me. We tried different things including drastically changing eating and drinking habits. Eventually we tried steroids, which immediately worked to reduce the swelling everywhere, but my hands. To me these were like a miracle drug. I felt somewhat normal again. The difference in my body was instantaneous and I could immediately notice when I did not take the steriods.
From June, 2011 until December, 2011 I dealt with different issues and tried different medication to determine what was wrong with me. In December I was able to get in to see a Rheumatology Specialist. Based on my symptoms, the Rheumatologist suspected Scleroderma, however, all bases had to be covered in determining the final diagnosis.
Since beginning to determine what was wrong with me, I have been through more medical tests, and seen more doctors than I thought was possible. Even though I was seeing a specialist, it was not until about February, 2012 that I was officially diagnosed with Scleroderma. My blood work kept coming back negative for Scleroderma, but all of my symptoms said this is what I had. I later found out I have a "suspicious" antibody, RNA Polymerase III. This antibody showed me my positive diagnosis for this disease.
Most people ask me what scleroderma is once I tell them what I have. I, also, had limited knowledge of scleroderma prior to hearing the doctor tell me this diagnosis. The only thing I knew was from a Lifetime Movie about a woman that had scleroderma. (This person was Sharon Monsky and she founded the Scleroderma Research Foundation.)
Scleroderma is a chronic, progressive auto-immune disease, similar to rheumatoid arthritis, lupus, and multiple sclerosis, where the body’s immune system attacks its own tissue. Scleroderma, which means “hard skin” can cause thickening and tightening of the skin, as well as damage to internal organs to include the lungs, heart, kidneys, esophagus, and gastrointestinal tract. The symptoms of scleroderma vary from mild to severe. For most people, scleroderma has a serious impact on daily life. Although there are medications that can sometimes help, there is not a cure or cause for the disease…………yet.
Scleroderma does have a daily impact in my life. It seems cliché to say, but things I used to take for granted are now difficult tasks to complete. Brushing my teeth, eating, tying Scout’s shoes, playing with Scout, walking, going up/down stairs, grasping something in my hand, getting out of bed, opening a lid/jar/pop (think about having to ask your 7 year old child to open a pop for you because you can not do it), grasping a cup, and many more I do not want to continue to name have now become obstacles to me. Although I push myself, they are difficult and painful for me to succeed at completing.
I go to physical therapy several times a week as I can not straighten my hands or fully bend my fingers. This is one of my big issues as I watch people make a fist and would really like to have that ability again. I have continuous pain and each day is different in it may be a good day or a bad day.
In my hands I also have Raynaud's Syndrome where not enough oxygen flows through my blood to all of my fingers. My fingers are very sensitive to temperatures especially cold. If my fingers get too cold, it can be very painful, they turn an irridenscent white, then possibly turn blue. If you see me wearing gloves indoors and in the summer it is because their protection helps ease the senstivity of my hands and keeps them warm. (Thanks Wendy for several pairs of gloves!!)
One other big issue with me is I get tired much easier than I used to. I used to work well on little sleep with a lot of energy. I used this energy in my work and volunteering for different things. Now my body requires more sleep and I still have a lower amount of energy. As a result, I have had to pay attention to the sleep I need and reduce things I volunteer for.
There are more issues I have and will continue to have with this disease, but my intent is not to go on and on making you feel sorry for me. My intent is to educate you about this disease and make people more aware of it to assist in finding the cause/cure.
I have joined and am a member of the Scleroderma Foundation which is available to help support people with Scleroderma and their families cope with the disease through support programs, physician referrals, and educational information. The foundation promotes public awareness and funds research to improve treatment and discover the cause/cure.
Through the local Scleroderma Support Group I have come to meet and know several people in Omaha with scleroderma. When I was initially diagnosed, my aunt got me in touch with a person who also has Scleroderma. Through this person I have found a new friend and a support group in Omaha. The support group is very positive and a great learning experience. Not only do I meet people with the same issues I have because of this disease, but also have people to discuss what I am going through on a daily basis as well as medicines and different doctors people recommend.
As I continue on my journey, I will have daily issues that may be good or may be bad. I am hoping if I spread the word, I will help to impact people, research, and build a good support network.
As a person still researching Scleroderma, finding things that can help me deal with my daily issues, and being new to the support group, I am hoping to have a large group of family and friends to show their support by participating in this walk.
Thanks for taking the time to read about how Scleroderma has affected my life.
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