My story - where to begin? You don't really want to read the whole Lifetime Movie Network version (besides, if I wrote it here they might not accept the screenplay). Really, you just want to know about my illness.
I will leave out the plethora of illnesses, accidents, and surgeries and skip to when I first realized that something was really wrong with me. Oh, but first (I lied) you will need to know that I have been on medication for Hypothyroidism since I was 12 years old, I have had arthritis in my right ankle for about 10 years and have had minor edema in my right leg for about 8 years. Ok, now I can go on to Lupus and Fibromyalgia...I am sure I have had plenty of symptoms for years, but they all seemed to plague me at once in 2009/2010.
In April 2009, I began noticing that I just could not stay awake and that both my legs were swelling to the point of looking like tree trunks. Then I would have days that just touching my legs felt like someone was reaching into my skin with flaming fingers and just ripping my skin off of the bone. I was also noticing a cyst in my wrist and that sometimes my speech was slurred. I went to the doctor and was told, "Do you realize that you are obese?" I said that I knew I was overweight and he said, "You are EXTREMELY obese. Do you realize how obese you are?" He told me to lose weight and I would be fine. I left that appointment so upset. OF COURSE I knew that I was obese, but WHAT did that have to do with my wrist and slurred speech!?!? This happened with 2 more appointments and since I don't have insurance and I am at the mercy of the Indian Clinics, I chose to drive to another clinic in another town.
By that time I was having CONSTANT pain in my legs and constant edema, I had a very horrifying episode with split vision, and the fatigue consumed my life. I went to the Indian emergency room and found out that my thyroid levels were 157! (Normal is 1-3.) I thought "whew" I will just change my Synthroid dose and I am home free! Wrong.
I was back and forth to the out of town clinic every other week. In January 2010, I got an abscessed tooth and had to take 2 rounds (20 days) of antibiotics before the dentist could pull it. Once pulled, I got another infection and had to take 2 more rounds of antibiotics. Meanwhile, the pain in my legs continued to get worse and worse and I was sleeping up to 20 hours a day.
Now I started physical therapy and taking carbomazapine, that stuff made me sick to my stomach. So my nurse practitioner switched me to Neurontin, which made me like a drunk (but hey! No pain) - I hated it. During this time, I was also having labs drawn every 2-3 weeks to monitor my thyroid and to look for any other possible explanation for my symptoms. During one of these labs, my liver enzymes came back way too high. My doctor ordered a repeat of the test and an ultrasound of my liver. I met with my doctor and my nurse practitioner to get those results and was asked, "How much do you drink?" They would not believe me when I said that I don't drink alcohol. They kept insisting that I be honest with them about my use of alcohol. I said, "I drink a glass of champagne on New Year's Eve and I might get tipsy once a year, if at all." Convinced that I was being honest, my doctor told me I had cirrhosis and that my liver function was at 87%... Fabulous! What else? I can never regain full liver function, but I can stop it from getting any worse. And I am happy to say that I have maintained that level for 4 years!
At that point my doctor and my nurse practitioner decided to do the ANA test for Lupus and told me, "This test isn't 100% reliable and even if it comes back negative - I am telling you that you have Lupus." I have had 2 positive ANA's and one negative over the last 4 years.
Oh yeah - and about that obesity? I joined Weight Watcher's in 2013 and have lost 31.6 pounds as of March 2014. I am on my way to a healthier weight.
And the
doctor who said everything was due to my weight? He was fired.