I was diagnosed with morphea in the first grade. When my mother first noticed the spots she thought someone at school was hitting me! But when they did not go away she contacted the family doctor.
Since then I have seen over forty doctors related to this. My spots have continued to spread over my abdomen and my back. In the past couple of years they have spread to my upper arm and are progressing downward.
I have had many medications prescribed to me. Anywhere from drinking Potaba six times a day to applying a topical ointment and wrapping my abdomen in plastic wrap overnight — talk about uncomfortable!
No one has ever done blood work or biopsied the areas, and this makes me wonder how they are so sure this is only a "cosmetic" disease. Only lately have I thought my chest pains might be related. We have only seen doctors in the Houston area so they have all been dumbfounded by "The Spots".
Going through school, I hated having to change in gym class. A snooty girl one time called attention to them by saying, "Oh, what a cool bathing suit you must have, with all of those holes in it." I guess she thought they were tan lines! I just said yes and changed as fast as I could.
I have not given much thought to it because my husband is the only person who sees them, and he accepts and loves me the way I am. Now that I have gotten one on my upper chest and one on my leg, I am getting a bit nervous. I would like to find something that will work towards at least keeping these silly things from spreading to my face. If you hear of anything new, feel free to e-mail me.
Two days after my story was posted, I was contacted by the local chapter of the Scleroderma Foundation. They sent me information on the disease and helped me contact a rheumatologist. I have an appointment in December.
I hope to finally get some answers to all of the questions. I hope everyone else out there can find the same help and support I have. The Scleroderma Foundation is there for a reason. They might be able to help you, too.
I went to my rheumatologist appointment yesterday. She confirmed the morphea diagnosis.
She says it is not internal and since I have had it for twenty years, there is very little chance of it crossing over. But, boy, I got one heck of a work over. They even checked under my eyelids! I never expected that.
I got a prescription for some pills called Plaquenil. Anyone ever heard of it? There is a chance of the Plaquenil affecting my eyesight, so I have to have my eyes checked about every six months now. There is also a possibility that the medication could affect my kidneys, but they are going to keep watch on that, too.
I will be starting cosmetology school in January, and the vain side of me wanted to know if we could lighten up the spots that cannot be covered by clothing. She is going to let me try some Retin-A. The doctor was very understanding. There is no guarantee, as usual, that this medicine will stop the spread of the spots. But anything is worth a try!
Thanks so much to all of you who have contacted me through this web site. I love the support, and the help you have given me to get in touch with the right people!
I want to sound upbeat about all of this, but in all actuality I feel helpless. I have since finished my education and am now a licensed cosmetologist. But that is not to say it was an easy road I traveled. I have had hand surgery for what the doctors said was a trigger finger. I had surgery on my foot which the doctors said I had heel spurs and nerve tumors in, neither of which I ever saw in an x-ray. This was through the middle of my beauty school. It is kind of hard to stand behind a stylist chair and work on someone's hair when you are on crutches. This 'wonderful' surgery that had me on those crutches kept me down for about a month in recovery time. And after all that was said and done and I started trying to walk again, I had running refills on pain medication and several electric massage therapy sessions, but the pain was not gone!
Because of the foot problems, my doctor said it would be best to lose some weight. (He said this in a very positive, "Please do not hit me," kind of voice.) I guess fatigue had caused me to put on a few unnoticed pounds, although I was the only one who did not notice. Since the start of the holiday season 2001, I have gotten rid of forty pounds of me. This did help me get off of the medication for pain.
I admit I have not done my part in keeping up with going to see a rheumatologist. But when you have to travel two hours to the city of Houston, find parking in the medical center, and have someone tell you, "Yep, still got it, and no we have not found a cure!" this does not make for a cheerful ride home. And I have been told to keep my stress levels down, so not to aggravate the disease!
The chest pains are still there, my family doctor says they are bones rubbing together. Maybe the bra is too tight!? I have trouble breathing when they strike. I can only take very shallow breaths. And they just come and go as they please, no rhyme or reason. My husband says I should go to another doctor for a second opinion. I know I should, but I am scared witless of what they might have to say. I want the physical pain to go away, but I also do not want the emotional pain.
Did I mention that my husband now says I need to have my eyes checked? He noticed how bad they were when we were taking a road trip and I was at the wheel. Hmmm…Plaquenil?
Therefore, I live my life everyday like an "average Joe". I have learned that the occasional detox wrap and herbal teas help mend moods. If I let it, it could bring me down quick. But when I feel like I am heading in that direction, I just take a look at my beautiful gifts I have been given, Madison and Morgan. And thank God I am still here another day. Things could be a lot worse!
New email address needed.
Old Email Prefix kellidoeshair
Story posted 10-13-00
Update posted 11-4-00 & 12-10-00
Update posted 6-22-02
Story edited 7-13-03 SLE
New email address needed 9-2-03 SLE
Story Artist: Shelley Ensz
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.