Sandy's Lupus Web Page
Lupus is an autoimmune disorder where the body's natural defense system attacks the good cells. Lupus leaves the patient feeling very tired and achey.For more information please visit Click here for LFA
I am writing this from my prespective. I was diagnosed with Lupus 7 years ago. I first suspected that there was something wrong in late 1988. I was always regular with my menstrual cycle. And I started with unusual bleeding. I had gone to my family doctor and he suspected a cyst. Well several doctors and many tests later, I was still having the same problem. But no one could tell me what was wrong. I was beginning to think I was crazy and believe it or not some of the doctors that I went to made me feel this way, too.
>Finally, one night I had so much back and abdominal pain that I went to the emergency room. The doctor on call checked me out and gave me a shot for the pain and sent me home. Now, I was having these problems for two yrs. My boyfriend was getting really po'ed that these doctors were not helping me. By chance he had a doctor's appt. the next day. When he went to see his doctor, he told the doctor about the problems that I was experiencing. Well, three days later I had an appt. with a different doctor. Of all the doctors I had seen he was the only one who ever had me tested for Lupus. Up until this time I had never heard of Lupus. It took until 1993 to confirm the diagnosis of Lupus. Now I had confirmation that I wasn't crazy
It's spring 1990, I just completed courses for my GED and took the exam. Passed the exam. I'm going to apply to my local community college for the fall semester. I have been accepted at the college. But before the fall semester begins I start feeling pain in my joints, have low grade fevers, suffer headaches and constantly feel tired, even after sleeping 14 hours.
My first semester passes uneventfully as far as healh goes, although I was feeling the aches and pains. Passed my courses, but not with flying colors. I go on Christmas break. Thank good. reminds me of being back in high school.(LOL) The spring semester for 1991 arrives and its back to the books. Late night studying and getting up early for classe the next day. I'm still feeling the pain and aches even with the pain meds. I'm ta'king about 1200 mgs a day. I've pretty much learned to deal with the pain.
It's fall 1991, I'm back at school. It seems that my pain has increased some what. I feel achier and my joints are stiffer, making it harder to get going in the morning. I also developed a sever rash on my back. Doctor gave me all types of meds. to try and clear it up but it seems nothing helps. It only itches when I get warm or sweat. The rest of the year passes with nothing major happening. Christmas comes an goes with the usual chaos it brings with it. 1992 brings in a New Year. My spring semester goes by. I stll feel the same. No new problems. Summer goes by. I lost about 8 lbs over the summer. For some that doesen't seem like alot, but when you weigh 118 lbs. to begin with, it is. Then I start my Fall semester for 1992. One morning, about three weeks into the semester, I wake up and went to get out of bed. I couldn't get up. I actually had to crawl out of bed. This went on for about three weeks. I had called and told my doctor about this new devolopment. It was back to the hospital for more blood work and an MRI. Nothing showed up in the blood work but the MRI showed a spot on the brain. After this episode it didn't happen again. I was still taking all my meds.
The winter of '92 and '93 are rough for me. With colds and flare ups. In Feb. of '93 I developed an infection in my lymph glands. Some went away with antibiotics and some didn't. At this time, I was scheduled to go for a biopsy on the lymph glands. My doctor wanted to rule out Hodgkins Lymphoma. For awhile I was scared. On March 13, 1993. That's right, the year that Pa. was belted with a Nor'easter. Thanks to a good 4 wheel drive and a good driver, I was able to keep the appt. I had the biopsy done. Was relieved when the results came back neg. for Hodgkins Lymphoma. :-) By the end of May, thru more blood work that included DNA testing, I had the dx for Lupus.
Up until this point, I had been researching Lupus in the college library. And from what I was reading, it wasn't all that pleasant. I was frightened, by what I had read. I went through all the emotions one goes through when they are diagnosed with a life threatning disorder. I went thru "the why me stage' to the denial stage. Then for some reason, I accepted the fact that I have Lupus, and no amount of crying and self pity was going to change that fact. I adopted this motto for myself. I may have Lupus, but Lupus doesn't have me.
Since this time I have been in remission, but still have flare ups. I am adding things here that have happened to me but I can't remember the exact dates that they occured. This is the second time that I had this happen to me. Only this time, I'm visiting my boyfriend, who had just had emergency gallbladder surgery. While I was visiting, I had started to feel sick to my stomach and was slightly light headed. I got up out of my chair to go outside to get some fresh air. I made it as far as the nurses station and I watched myself go to the floor. I was totally concious the whole time, but I could not move from the neck down.I was taken out to the emergency room and checked out by doctor on call and he thought it was because my sugar was to low. He made me eat before I left the hospital. My second episode with these symptoms.I was at home snd it was late at night. For some reason, I couldn't sleep so decidedto do laundry. While the wash was going i was watching tv. I started feeling sick to stomach and light headed. Went to go up stairs but only made it to the bottom of the steps before I went down. My boy friend took me to the emergency room. I was admitted to the hospital for two days. I was hooked up to a heart monitor because they thought it was a mild heart attack. They also did a Cat Scan and ran an EEG to rule out Epilepsy. As of 1995. my family doctor has me on a Multiple Sclerosis watch, because I have been showing signs of MS. As of now , I still have flare ups. I guess that's par for the course. Although I have developed allergies and mild emphasema. Meds. help with these new problems. Although I am going through alot,I consider myself one of the lucky ones. Right now you are probably asking yourself "Why do I consider myself lucky?" The biggest reason is that I am alive and that, although I am disabled, I can watch my daughter grow into young adulthood. I will be able to see her graduate from Highschool. And want to watch her walk down the aisle at her wedding, if and when she decides to get married.LOL You see I have decided to fight my disorder. I will not let my disorder rule my life. The reason I chose to fight my disorder, is that I had family members who passed away and they really had no chance to fight for their lives. Even with today's medicine and technology, they still didn,t survive their illnesses. One in particular helped me the most. She was my second cousin. She passed away last summer. her name was Niki and she was born with a heart defect, that required a heart transplant before she was two years old. By watching her go through her problems, I realized that if she could fight for her life, then why couldn't I. So Niki became my inspiration. She gave me the courage to fight my disorder.
Best news I have to share with you is that after years of smoking, I finally quit. Christmas Day 2002 was my quit date. and so far I am doing great.
I have been doing fairly well the last few years. Have flares frequently but all in all doing ok. Have a new doctor and have been going to physical therapy. It seems that the Lupus is causing my muscles to stiffen. When I first started therapy for my back I couldn't come within 5 inches of touching my toes. But after , I was within 2 inches of touching my toes.
I have had more MRI's done and they are showing more damage within the brain. Will be going to see a Neurologist within the next month. My Doctor wants to rule out MS, I am showing signs of having it. Better to be safe then sorry. I still take one day at a time.
I recently recieved a letter from my Senator. To see a copy of the letter go to Letter From Senator
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