Thursday, December 19, 2013

Lupus and the past 10 months

One of my last posts in December 2012 was about having Shingles. I was home from work for quite a while sick and had a slight rash on my back. The doctors thought I had shingles and that's why I constantly felt feverish, achy and like I had the full blown flu. I started feeling bad around December 5th, 2012, yes I remember the date, that's how bad I felt. I didn't really feel like I could function and get out of bed until early January. I worked at a job in which I was made to do a lot of physical work (stuff I didn't sign up for) like rearranging bankers boxes in a musty, gross basement for days on end. I constantly felt tired and exhausted and just thought it was my age and that I was out of shape. I was only supposed to be an administrative assistant but the job quickly spiraled into a full blown stressful job. Let me back up and say that for the past couple of years, I would wake up in the morning and feel like I had a really strange, sweaty, feverish feeling. I always remember it would hit me by the time I got to the coffeemaker in the kitchen. I would stand there thinking how out of shape I was and that I felt like I was starting to break down. Late thirties and early forties were killing me. Literally - or so I started to think. I put off going to the doctor because I assumed they would tell me to exercise and watch my sugar or something like that. This past summer, after my Mom had gone through heart stent surgery, it really scared me and I started exercising everyday for about two months. I lost about 20 pounds and was so proud of myself. Then I started feeling flu-like again. Ugh. Right after July 4th, it became unbearable. I couldn't be out in the sun or I would feel as if I was going to either throw up or pass out, I was unbelievable tired, as in two naps a day tired and my body hurt so bad. I went to my regular doctor and he put me on the antibiotic for Lyme disease. That panicked me. They tested me for Lyme disease. Negative. I called back telling them I still felt horrible. They tested me for other tick-borne illnesses. Negative. They tested me for thyroid, vitamin levels, blood counts, etc, etc. All negative. After the doctor I was seeing told me, "Well you look good, you don't look like your sick." I lost it. I felt completely helpless. I thought no one would ever help me and they all thought I was crazy. The doctors even asked if I was happily married, maybe I was depressed. Nope - very happily married and not depressed. Well, hold on, kind of depressed because no one will acknowledge that I'm suffering and something very horrible is wrong with me. I finally switched back to my previous doctor who'd known me since I was eleven years old. He knew I was never sick so this had to be something. He did a lupus and some other test. Negative. Complete frustration. I turned to Facebook. I simply put my symptoms out there and asked if anyone had ever experienced this before. I lot of people commented back that I needed to desperately see a Rheumatologist. cousin chimed in and said, "You really need to check for auto-immune disease, every female in your Moms side of the family has one." Bingo. There was my clue. I immediately called my doctor who referred me to a Rheumatologist. This doctor was immediately interested when I told him about my family history. He did the "real" Lupus test and inflammation tests and they came back with my inflammation rates two and three times the number they should have been. Score! Something finally says I'm sick. The odd thing is, in 2008, my inflammation markers were very high. There was a blood test my dr. did then that came up as suspect but I was so healthy, he never went further with the testing. So....long story short. I now have medicine. It has made a tremendous difference in my life. I finally feel as if I can function everyday. Granted, I can't have a huge, fun filled day without feeling super tired. I have to really rest in the morning if I'm going to go to a big event that night. That's ok. Small sacrifice for feeling good. I was beginning to panic. I felt like I was missing most of my kids and husbands lives. But, they were nice about my sickness and felt bad for me. My son was even googling my symptoms trying to help. Poor thing. I know it's going to be a struggle I'm going to have to deal with, but I'm willing to fight for my good health. You don't realize how much you take for granted until you can't do it. It gives you a new perspective on life.

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