*Warning* This is long and may be a little TMI for some...
About a month or two ago, I had lower back pain and joint pain so bad that it was difficult for me to walk or do everyday activities. I was always tired. My hair was shedding a lot and I was noticing the hair on my head thinning out. I had a scratch or something on the roof of my mouth. My eyes would get extremely dry and painful, and I couldn't wear my contacts more than a few hours. I would lose my train of thought and blank out on common words. I felt like my body was falling apart on me. I started wondering, "What is wrong with me?!" but I attributed it all to getting older (my 30th birthday was coming up, and I had heard that your body just goes downhill from there).
I had just started a new job after being unemployed for 5 months and was still stressed about my financial situation. The holidays were in full swing, but I couldn't get into the spirit of the season. I stayed up late on New Year's Eve to ring in 2011 and burn fireworks. I wasn't feeling great, but I was okay.
On January 2nd, I woke up and watched some football with the hubby. Suddenly, I got a horrible stomach ache. I went to use the bathroom, but the stomach cramps remained. I tried resting, but the stomach pains got worse. I ended up going through a cycle of extreme stomach cramping and short spurts of diarrhea. It got so bad that I was lying down on the bathroom floor between using the bathroom because going back and forth from the bed was too exhausting. Finally, the diarrhea subsided and I made it back to bed to try and get some rest, but I kept waking up due to the stomach cramps. I lost my sense of time, but I would say I'd get an extreme cramp about every half hour. President Obama was in town this week, and for some reason, I thought that every time I changed position was a matter of national security (does this count as hallucinations?), so I tried to move as little as possible. Hubby came to check on me and brought me some water to drink, but I couldn't keep it down. It was a horrible night. It was the sickest I have ever been.
At first we considered blaming it on food poisoning from the raw fish or raw oysters I had on New Year's, but the timing didn't work out and my husband had eaten the same things and was not sick. Then we thought I must have gotten some kind of stomach virus. I was afraid I had gotten the Norwalk virus that is common on cruise ships. I figured I just had to let it pass, so I stayed in bed the next few days to wait it out. I was so tired I could not do anything. Watching television was too much effort, and I ended up just sleeping all day. I had no appetite and the smell or thought of food made me nauseated. When I tried to eat a little something, it would just come right back up. I lost 10 pounds in just a few days.
After a few days, I was able to keep liquids down and managed a few bites of food. I still didn't have an appetite, and when I did eat, things tasted funny. The "scratch" on the roof of my mouth had turned into a big sore, and it hurt every time I tried to eat or drink anything. It had been almost 2 weeks and I had barely eaten a thing.
I was so weak and tired. It took all I had just to get out of bed in the morning. I tried to go back to work after a week since I didn't want to lose my new job. It was so hard to make it through the day. By lunch time I was so fatigued that just sitting at my desk was too much effort. My office doesn't have a lounge, so I considered crawling under my desk just to lay down. I ended up walking 15 minutes to my car just so I could lay down for a little while.
After a few more days, I still wasn't getting better, so I decided to go to the doctor. I had been putting it off because I kept thinking it would pass and I just needed to rest. The sore in my mouth was really bothering me, though, and preventing me from eating. I thought that if I could fix that, I could eat, and then I would get my energy back and be all better.
When I spoke to my primary care physician (Dr. C) and told her what was going on and all the symptoms I had, she had a suspicion that there may be some type of rheumatological issue. She decided to run some laboratory tests. The test showed that my white blood cell and red blood cell counts were extremely low. I also had an extremely high ANA (anti-nuclear antibody) count, which is a non-specific indication of autoimmune disease.
The next day we got more results back, and my anti-double-stranded DNA antibody count indicated lupus. Anti-dsDNA is a more specific test for lupus (SLE - systemic lupus erythematosus), as it is found in 70% of cases, whereas they appear in only 0.5% of people without SLE. At this point, Dr. C referred me to a specialist (Dr. K) who could confirm or deny her initial diagnosis.
In addition to the lupus, the laboratory tests showed my kidneys were only functioning at about 40%. Dr C thought it may have been due to dehydration, so she gave me an IV for the next 3 days. Kidney function improved to about 50%, but they still weren't where it should be. She also said I had a bladder infection and mild pancreatitis (inflammation of the pancreas) and wanted me to go in for a CT scan to make sure everything was alright. Unfortunately, I wasn't able to do the CT scan because of my kidneys, so she sent me to get an ultrasound. The ultrasound came back showing sludge in my gallbladder and lesions on my liver. I was then sent to get a HIDA scan for my gallbladder and an MRI to check my liver. Luckily both of those results were negative.
I couldn't believe that there were so many things wrong with me! From what I thought was getting old and a common stomach bug, I was suddenly a lupie. While I'm not happy I have lupus, at least now I have an explanation for all the things that are going on with my body. They say some people are relieved when they finally get a diagnosis, others go through a period of grieving. I was initially in shock and am in research mode to find out as much as I can about the disease. I'm still not sure what to expect and will just have to take one day at a time.
-a little lupie-
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