My name is Farrah and though I have not been diagnosed with lupus, I was asked to share my story for those who are going through what I have. I am 20 years old and since I was born (or so it seems) I have been sick. The main sickness I keep getting is tonsilitis. At one point, I had it four times within a two-month period. My temperature usually goes up to about 104. Yet, I've always had a "normal" temperature of around 100. Being that I nor my family has ever had much money, I was on the "Healthy Kids" program, which did not allow for removing my tonsils. The medications seemed to only make me sicker.
Several years ago, I developed some type of rash on my face. I was told by the physician that it wasn't an allergic reaction, yet they couldn't explain it either. It was suggested that I use "Cortaid .5%" on my face, but that just made it worse. I had a lot of problems with this "rash" for about 3 years. Then one doctor told me NOT to use the Cortaid ever again. I went to a dermatoligist who said it wasn't a skin condition, but that it was under the skin and there wasn't anything she could do to treat it. I was referred to another dermatoligist and he tested me for a few things, one of which was Lupus. But as I remember, the test came back negative at the time.
I do know that the doctors I've seen throughout my life have believed I was making up most of my symptoms. I have been to many doctors and one of them even said, "The $6,000,000 question is: 'What do you want me to do about it?'" Another doctor said, "Put some make-up on.. that will stop the redness." But it's not that simple. To this day, I can't put anything on my face. When I am out in the sun, my face turns almost to a purplish color and burns.. it literally burns. It feels like I am on fire. Sometimes it happens just in regular light. But I've given up on doctors -- I would rather not go to them anymore because they tell me it's all in my head.
As I said.. I have been to many doctors and for a number of unexplained things. I was once told that I had swollen ovaries, but no one knew why. I've had recurring urinary tract infections. It seems when I don't have cramps that put me in the fetal position, my stomach is queezy. I get bloated very easily and even after eating only a few bites, I feel as full as if I'd eaten a seven-course meal! I throw up at the drop of a hat. I get these headaches that hurt so bad I cry. I sometimes have very sharp, intense pains, which come on suddenly, last a few minutes and then go away. No one seems to know what causes those either. I believe I have recently developed asthma. Sometimes I wake up in the middle of the night unable to breathe, and I have to sit up. Whenever I am near any kind of smoke or sprays, I get this dry, whooping-like cough that doesn't go away for days. I also sometimes get little bumps on the tips of my fingers. They are about the size of mosquito bites. They don't hurt all of the time, but just when touched at the right spot. Sometimes I am so fatigued that I don't even get out of bed and I KNOW I am not just lazy. I just don't have the energy. And sometimes when I get up, my knees hurt or occasionally my elbows. The point to all of this is.. I have still not received a diagnosis, but wonder if I might possibly have Lupus, and if there is any hope that I might one day be taken seriously.
~Farrah~
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