My Story

My story is a long one so I’ll try my best not to bore you. Not making any promises, though.

When I was 16, I came down with a severe case of pneumonia. It took me almost 2 months to get over it but I never fully recovered. I started having severe fatigue, muscle pain, sleep issues…you name it! I went through the whole gambit of doctors and no one could tell me what was wrong. After all, I was 16 so there couldn’t possibly be anything wrong with me! It was all in my mind, didn’t you know that? I’m psychotic! (Gotta love the medical field sometimes, ya know?) It took me 2 years to finally get a diagnosis of fibromyalgia, which didn’t calm my fears very much. My rheumatologist at the time, such a kind creature, told me to suck it up. Literally. She used those words. I had to hold my mother back from punching her in the mouth. (My mom is the best!) The doctor finally gave me some medicine to help with the pain: Vioxx and Celexa. The Vioxx helped me SO much! (Too bad it was taken off the market several years later.) The Celexa made me extremely moody, so I didn’t stay on that for long.

So I went along my merry way, determined to find out as much about this disease as I could. I holed myself up for hours in the health section of Barnes&Noble, hoping to find something that could help me. It took me a couple of years to come to terms with the fact that this “thing” wasn’t going away. And that was extremely difficult. When all my friends were going to a party on a Friday night and I happened to be having a “bad” day and couldn’t go…well, to be frank, that really sucked! Learning my limitations was trial and error. Being so young and always very active, I thought, “Well, if I just push myself a little bit harder…” That never turned out well. But I learned. I learned alot of things, actually. About myself, my family, my friends and the medical field. When you’re dealing with a chronic illness, or ilnesses, you find out who really cares about you and who doesn’t. And that’s an important lesson to learn. But that lesson was only the beginning.

By the end of 2006, when I was 24 years old, I finally switched rheumatologists. I felt like I was getting worse and my doctor was just blowing me off. (Which, when you’re young, you’ll find a lot of doctors will do that!) My hair was starting to fall out, I was getting sores in my mouth and nose and on my scalp. I had these really funky bumps on my nails. Lots of weird stuff! I also had this weird rash on my face. So I made an appointment with Dr. Matt, my new rhuem. In the mean time, I went to see my dermatologist about my rash. He took one look at me and said, “That’s a lupus rash.” I was like, “No way, I know I’ve been tested for lupus and it was negative.” He wanted me tested again and told me to mention it to my rheumatologist. I knew I’d been tested because to diagnose fibromyalgia, everything else has to be ruled out. So I called the old wretch to get my records. Turns out, she never tested me for lupus! I was aggravated, to say the least. So Dr. Matt tested me, even though he didn’t think that was my problem. Low and behold, the test came back positive! Wonderful! Now I had another illness to deal with. (Yes, he said I still had fibro, too.) For those of you who don’t know about lupus, I’ll give you the short version of it. We all have antibodies in our sytem that attack foreign invaders, such as viruses, bacteria, etc. My body thinks that my insides are foreign invaders, so it is basically attacking itself. Up until now, my organs have not been affected. It’s only attacking my muscles and it could stay like that, or it could get worse. Nobody knows.

So that was a harsh blow. To be brutally honest and open, lupus can kill you. That freaked me out. Alot. It freaked my family out, too. Along with the lupus, I was also diagnosed with Hashimoto’s Thyroiditis, which is autoimmune thyroid disease. Again, my body thinks my thyroid is an enemy and is attacking it. (My body LOVES making those antibodies!) Unfortunately, once you have one autoimmune disease, it opens you up to all the others. Lovely, huh? However, just like before, I was determined to fight this thing. About a year after my diagnosis, I started seeing a naturopathic doctor, Dr. David, who put me on a regime of vitamins, minerals and diet restrictions. That helped me SO much. I was feeling amazing! So I was dealing with everything and was going along with my life when I recieved another blow.

In December of 2008, I started having severe pain in both of my feet. I thought maybe I had pulled something, so I ignored it. Then the pain spread to my ankles. I still blew it off. (I hate going to the doctors, in case you didn’t notice.) Then, in March of 2009, I came down with a severe case of strep throat. After that, the pain spread pretty rapidly up my legs to the tops of my thighs. I started to get concerned when, while I was sitting at work, my legs went comepletely pins and needles on me. So, considering I work for my PCP, I asked our physician’s assistant what she thought. She examined me, left to make a few phone calls, came back into the room and said, “You’re going to the emergency room.” She was concerned that I had Gillian Barre syndrome, which is also autoimmune and can be brought on by a severe infection. My mom picked me up and took me to the local ER. My dad and my husband met us there. Before I knew it, they had put me in an ambulance and were transporting me down to Massachusetts General Hospital. I was in the hospital for a week, with severe pain and numbness/tingling in my limbs. I couldn’t walk. I was scared. I was discharged from the hospital with oral steroids and no answers. The doctors had no idea what was going on. They didn’t think it was Gillian Barre, they were leaning more towards Hashimoto’s Encephalopathy, which is when the antibodies start attacking your brain and spinal column. (It’s very rare.) They weren’t positive that it WAS that disease, however. So they wanted me to follow-up with the neurological clinic. A few days later I was back at the ER with worsening symptoms but they sent me home to await my appointment at the clinic. (I’ve been out of work for 3 weeks. Stressful!!) Oh, and I also have a benign tumor in my brain. Due to that, I can’t have a spinal tap because if I lose spinal fluid it could move and cut off fluid supply to my head and my brain would swell and…well, that wouldn’t be good. I had an EMG done (nerve testing), which came back normal. The doctor at the clinic said they really think it’s the Hashimoto’s Encephalopathy but they have never dealt with it before so they basically have to try and control my symptoms with medication and wait and see what happens. My PCP wasn’t too thrilled with that answer, so he is doing more research and trying to locate a doctor who has treated this successfully.

So that’s the latest on my story! I will keep you updated.