I was officially diagnosed with Systemic Lupus in February 1998, but my story begins long before. I think that I have probably had SLE since 1979 when various, unexplained complaints began ~ facial rash, mouth ulcers, and neck pain. Then, in 1989 I had a Grand Mal seizure out of the clear blue, for which no cause could be found. During 1991 - 1993 I had a variety of symptoms that kept me running to the doctor.
I was screaming that I had Lupus but could not get anyone to believe me. I asked my PCP to do an autoimmune workup and he bluntly told me it was not necessary. After his refusal, I consulted an Allergist who did the autoimmune profile I wanted. I tested positive and was diagnosed with SLE. I was then referred to a Rheumatologist who said I did not have Lupus. I sought a second Rheumatologist for another opinion. This physician said I had DILE (Drug-Induced Lupus Erythematosus) produced by the medication I was taking for HTN (Hypertension). After stopping the medication and two dose-packs of prednisone, I was better. I basically put the Lupus diagnosis out of my head.
In November 1997, I began being extremely tired all the time. I came home from work and headed straight to bed. By Christmas I was blaming everything on the Holidays, the kids being home from College, and all the preparations that go along with Christmas. By February '98, I was very ill. I had drenching night sweats, low grade fever, 18 pound fluid weight gain, and hives. Everything was swollen: my eyes, face, feet, and ankles, and my eyes were constantly burning and tearing. Both, my red and white cell counts were low, blood complements were low, and I had a high ANA.
I was first sent to an Opthalmologist who started me on Prednisone. As long as I was taking 40 mg. a day, I felt great. Yet, as soon as I tried to taper the dose of steroids, all my symptoms returned. By then, the Rheumatologist was convinced I had SLE. However, since I had been previously told that I did not have SLE, I wanted another opinion. I consulted yet another Rheumatologist and I will never forget what he said before I left:
"Now Barbara, let me get this straight; In 1991 you saw two Rheumatologists that said you did not have Lupus and you just believed them?"
That was it in a nutshell! I believed them because I did not want to have this disease.
Since that time, it was discovered that I had a huge pericardial effusion. This necessitated a hospitalization and IV steroids. And then in September 1998, I had another Grand Mal seizure while at work. I could not drive for several months and missed 7 1/2 weeks of work. Now the good news: I have been off of steroids for a month and my last blood work looked somewhat improved. I am keeping my fingers crossed that this flare is finally coming to an end. I know now that I will have to deal with these symptoms off and on for the rest of my life.
I have had a tough time dealing with this diagnosis. I missed so much time from work and my whole life-style has changed. After the seizure, I was prescribed Tegretol, which is an anti-seizure and nerve-stabalizer medication. It helped me very much. I am starting to feel much more like myself and find that each day I seem to have a bit more energy. Friends and family have been helpful and my faith in God has also helped me cope with everything. I guess I have realized that I can't do everything, like I used to. I am worried that my memory will be impaired in the future, as I now sometimes have trouble finding the right words that I want to say. I hope it doesn't get worse, for I really want to continue my Nursing career.
I empathize with all of you who have had diagnostic difficulties. That was the most frustrating time for me. Unfortunately, there is no one test that tells if you have Lupus. I've certainly had my share of unsatisfactory medical care, but I now feel that I have found a good PCP and a good Rheumie. Best of all, I no longer have to try to prove that I am sick. I feel that I have so much to be grateful for. I truly appreciate the life God has given me. I was so happy to reach my 50th birthday in December, as I seriously had doubts at the beginning of last year. My husband has been supportive, though he wishes I was back to normal ( whatever that is). I'm thankful that I have been able to return to work and I'm doing my best to take care of myself physically and emotionally. God Bless each and everyone as we live each day to our own potentials.
