Hi, my name is Becky. My diagnosis has been a long time in coming. I was diagnosed with CREST scleroderma in June 2002. When I was nineteen and pregnant with my first child I was diagnosed with rheumatoid arthritis, which they stated was brought on by the pregnancy. My rheumatologist says that it does not happen that way.
I was in a military hospital and they withdrew fluid from my joints, which had swollen to the size of baseballs. I was in tremendous pain. I never realized a person's bones could really hurt, even when they were sitting still. They put me on aspirin every two hours around the clock. That was fun; setting an alarm to wake up every two hours all night long every single night.
Then I found a book that said pregnant women should not take aspirin. I showed my doctor. So he then says, "Okay, well than we will put you on prednisone." Although Prednisone can be a real nasty drug, it worked wonderfully. I was pain free as long as I took it.
After I delivered my baby all this stuff just went away and I thought I was done with it.
Four to five years later, I tested positive ANA for scleroderma in a pre-op blood test. I was going to nursing school and had all the scary information to read and I started having major panic attacks. I went to see a rheumatologist and he decided I just had a strange blood makeup because, as high as my titre was, I did not show any symptoms of the disease. Again I thought I was home free.
A couple years ago I started having problems with swallowing and had to have my esophagus dilated. Then after another year, I started noticing that, at my son's football games, my hands would become numb and painful and looked like they belonged on a corpse. At first I just thought it was wild. I would say, "Look at what my hands are doing again." Well, it is not so cool anymore.
My primary physician has been taking care of me since I was a kid and he basically blew me off about my complaints that I had Raynaud's and did not follow up on any of it. Doctors do not really like when the patients make their own diagnosis, even if they are nurses.
Finally a new doctor came into the practice and took notice. He sent me to a rheumatologist again. I did not really give it much thought. I almost canceled the appointment because I had worked all night and was tired. I am a doctor's nightmare patient, like many nurses are. I never do everything they say and treat myself whenever possible. But I went to the appointment not really expecting anything new.
The doctor did a very thorough exam and said, "You have scleroderma. This can be a very scary disease and not much is known about it. We need to get you on the right medicines and prevent the symptoms from occurring. Most important though is that you check your blood pressure very regularly because hypertension is what kills people with scleroderma the most."
Remember that I am all alone at this appointment and I freaked out. I called my husband and told him to meet me at home right away! I asked the doctor if I needed should be scared and he just looked at me while I was standing there crying and he did not say a thing. That did not make me feel any better!
I started having panic attacks and began to search for everything I could on the disease. I dug into the Internet and every book I could find. I took all the tests they ordered. I was overwhelmed. Before this I did not even get a yearly physical on a regular basis. Now I had doctor appointments every week at least.
I also had a problem with swallowing and they were telling me to take more pills, which I still never remember to do very well. The pulmonary function test showed minimal lung involvement and they dilated my esophagus again.
Now after all the busy time of the initial diagnosis I am just dealing with the changes as they occur and trying to keep depression at bay. I have minimal involvement at this time, but I know what I have to look forward to. Things do keep getting a little worse as time goes by. I have doubled up on my reflux medicines and constantly battle the cold weather and the Raynaud's. But it definitely could be worse.
My pastor says, "What is the guarantee that any of us are going to be alive ten years from now? We've got to make the best of the good days we have when we have them."
I have two teenage kids and an awesome husband of seventeen years. I am still a nurse, though I am trying to work less and decrease my stress level. I am interested in becoming a pen pal with someone so that we can be supportive to each other as changes occur and compare notes.
New email address needed.
Old Email Prefix: haner97
Story posted: 11-25-02
Email note posted 01-20-05 SLE
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