My name is Finicia Compton. I am 21 years old. I am a full-time college student majoring in Secondary Education in Mathematics at Pikeville College, in Pikeville, KY. I unfortunately am a Stillís Disease sufferer. At the beginning of this disease I asked many times, "WHY ME?" But after all said and done, "Why not me?" I am lucky to be alive. We donít realize how lucky we are in life, how lucky we are to be able to talk, hear, walk, and to breathe until it is taken away. We all are faced with struggles in life that we have to deal with and try to overcome, and if we canít overcome them, we must learn to adapt to them. The struggle in my life has been Stillís Disease, and I guess I have adapted to this disease. I have had to make a lot of changes in my life and some for the better.
It all happened so quickly and with no warning. I was on my way home for the weekend from college (at this point I attended Morehead State University) and on my drive I noticed my right leg was itching terribly. When I arrived home I showed my mom and we both thought it was an allergic reaction to a lotion or soap of some sort. Later that night the rash had spread to the other leg. By morning the rash was all over my shoulder, legs, and arms. Mom rushed me to the emergency room and the doctor asked if I had been taking any new medication. The only thing new I had taken in the last month was the Excedrin Migraine medicine, because I always got real bad headaches. This doctor seemed to believe that I was allergic to this Excedrin Migraine medicine. Therefore he gave me a shot, some benadryl, and an antibiotic and sent me home.
By the next day, I couldnít even get myself out of bed due to the fact I was sore and stiff. My throat was sore, I was freezing, had the rash, and had a fever, not to mention all the pain I was in. I couldnít even put my clothes on, get myself out of bed, or walk without assistance. Nevertheless, my mom called the doctor that I had previously seen in the emergency room and he told me to come right over and stop the medication that he had given me the day before. When I arrived, he examined me for the second time and said that the rash wasnít due to an allergic reaction. He phoned another doctor to examine me. To sum it up, these two doctors said they didnít know what was wrong with me and told me to see a dermatologist by Monday--- What a joke!
Later that night I kept getting worse. My mom said we couldnít wait till Monday. We drove 3 hours to a hospital in Lexington, Kentucky. I was admitted into the emergency room and examined at first by a Physicianís Assistant, who said that she thought I had Scarlet Fever. They did a few blood tests and then I was examined by an internal medicine doctor. The internal medicine doctor admitted me into the hospital for observation. I had to spend my 20th birthday in the hospital. I was in so much pain all I could do was cry and beg for some type of help to get rid of the awful excruciating pain. I stayed that night in the hospital while nurses came in every hour injecting steroids in my body.
On the next day I was examined by an infectious disease specialists, who thought I had Lupus. I was given more steroids and pain killers for the time being. I was put in his care for some further testing and released from the hospital. I lost 20 lbs. in one week. I was put on 40 mg of Prednisone a day, which seemed to help me a lot. However it was a steroid pack, which means you lower your dosage each day. Well by the weekend I was back in the same shape as I was at the beginning. When I was on large dosages of steroids I was okay, the low dosages had me back at start.
The whole month of March and middle of April I was visiting this infectious disease specialist about twice a week for some testing. Every time we went back we were given no diagnosis. One time he said I had Rheumatic Fever. He then said he thought it was Lupus. He did 6 extensive tests, because he was almost sure that was it. Rheumatic disease mimic each other, so they all have the same symptoms, which make them hard to diagnose.
After a month and a half of testing he finally said I had Stillís Disease. My mom and I were both puzzled, "What is that?" He said I had a very severe case of it, that is why he didnít suspect that it was Stillís before. During this month and a half the rash had left and reoccurred again, but this time all over my body. I have always had constant muscle and joint pain. I would run a fever of 103 to 104. I would also take spells where I would shake to death because I was freezing so bad. My throat would be sore off and on. I would wake up in the morning with my shirt soaking wet from sweat--- It what they refer to as "night sweats", a symptom. I had to get assistance to walk, rise from a chair, or even put my clothes on. I had missed so much school I had to withdraw for the spring semester at Morehead State because I was unable to return. He said that doctors donít know how you contract this disease, and really donít know the cure either. He referred me to a Rheumatologist who specialized in the disease that I had.
On the first visit to this Rheumatologist in May of Ď98 I had already gained 50 lbs., due to the Predinsone, which is a steroid and steroids cause you to gain excessive weight. I was starting to feel a little better, until my rheumatologist started weaning me from my Prednisone. She said that a steroid was a band-aid , because the problem was still there even though I was feeling better. She explained to me that my immune system was attacking my own tissues in the joints and muscle, which is why I was in pain. The rash was caused by all the inflammation in my body from the white blood cells attacking joints and muscles. My liver was inflamed, my white blood cell count was sky high, my sed rate was high, and my protein count was high. She said they had caught my disease early and luckily no organs were damaged, My liver could be repaired by antibiotics, but I had a severe case of Stillís Disease. I guess my mom and I made a good decision by coming to Lexington.
In May of í99 I found out through an MRI that I also had Avascular Necrosis, which is where the blood supply is cut off to the bone. I have this in both knees, and the only cure for it is a total knee replacement. My rheumatologist doesnít want me to have a knee replacement right now, due to my age and my diseaseís status. Knee replacements could set up infection in the body and since my meds lower my immune system to control the disease, my body couldnít fight off infection or even a simple cold for that matter. So temporarily we are just treating the pain and I have to walk on crutches or a cane to keep the weight off my knees when rising from seats. Stairs are prohibited. Water exercises are good because they take the weight off your body.
Throughout this disease I have been tried on Voltaren and Naproxen, which didn't help. I am currently on Prednisone, Plaquinel, Ultram, Relafen, Loratab, Folic Acid, Methotrexate, Calcium supplements, and Vitamin E. I guess thatís a pretty long list, but I have seen some improvement with all these combinations. I have also seen a Physical therapist to help with my strength and walking, but no good results. The thing that has helped me the most is the water exercises in my heated pool, where the water is about 101 degrees. Warm bath water or pool water seems to loosen up my joints and relieve the pain for a few hours. My jacuzzi helps a lot because it is warm and massages the joints. The doctor said any kind of warm water and massaging would help relieve the stiffness.
As of right now, I am still on a low dosage of Prednisone, along with all the other medications. I still have some trouble going up stairs, rising from my chairs, bending down, etc. , but I am walking better. Some days are worse than others. For all you who suffer with Stillís I know what you are going through, and God Bless You. Having this disease has made me learn to appreciate what God has gifted me with. I never knew what it was like to be dependant upon someone else before I got Stillís. All I can say is that I couldnít have made it without my mother, father, sister, dear friends, and the Stillís Disease Support Group by my side offering support and affection. But most of all, I couldnít have made it without God by my side. I relied on God to give me strength and help me through this and he did and he is still giving me the strength to battle it everyday.
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