My (Very Long) Story-Part 1

Alot of people that have been in my life know some or part of my experience with autoimmune diseases. To start I need to say that what has happened to me is still going on within my body and is still somewhat of a mystery. This is a really long story, so I will be breaking it up into several posts. Please feel free to post comments or questions. My hope in sharing my story is that it will give some insight into the mysterious world of autoimmune diseases.


Okay, deep breath, here goes...

It all started in December of 2006. My husband and I had just returned from a trip to Germany with my in-laws. I should probably mention that the last two days of the trip I was stuck in our hotel with fatigue, nausea, and stomach cramps. Once I got home, I already had an annual exam scheduled, so I decided to ask my doctor about my symptoms. Of course she had no idea, but sent me upstairs (our insurance was with Kaiser Permenante at the time) to a family physician. This doctor didn't have a clue what to test for, sent me to get a chest x-ray, and sent me home with some medicine to help with possible inflammation. By the time I got home, by throat and jaw area were killing me. So much so that it hurt to open my mouth wide enough to eat anything. My husband and I had plans with friends that night to see a movie at the Fox, but since I wasn't feeling well, I told him to go ahead and go without me. By the time he got home, the left side of my face was horribly swollen. The next day we went back to the doctors office to get things figured out. They decided to do some blood work, which ended with me almost fainting, then getting an IV for fluids, then heading to the hospital because they couldn't figure out why my blood pressure was still so low.

Well, my hospital stay lasted a week and my diagnosis was that I had a viral infection. "WHAT?!" Was my reaction. That was it-nothing else-not even a doctor to follow up with. So, I went on with my life.

Here is an example of what my Vasculitis looked like.
(These are not my legs)

The next month I notice a weird rash on my lower legs. I just attributed it to the fact that I worked, then went to school and wore pretty high heels most days. My husband convinced me to go to the doctor. That doctor did some tests and immediately referred me to a rhuemotologist. I was a little worried considering that my blood tests indicated that I had something in the autoimmune family (lupus, rheumatoid arthritis,etc)! Anyhow, this rhuemotologist put me on prednisone, did more blood test, and this went on for a while. I was also sent to a dermotologist, who took a biopsy of my leg (which resulted in henoch purpura). The doctors still couldn't figure out why my blood tests were showing that I should have all the symptoms of Lupus and Rheumatoid Arthritis. Keep in mind my only symptom at this time was the rash.  Throughout the whole summer of 2007 I dealt with this. Sometime during that summer (can't pinpoint when), we figured out that the rash was an autoimmune disease called Vasculitis. My Rheumatologist still didn't know what to give me for it except steroids (which I didn't accept-they didn't help and the side effects were horrible). Not only was the rash horrible to look at, it hurt extremely bad. Most of the time, after the rash appeared, it was very hard for me to walk for a couple of days. I didn't want to wear shorts, but pants just irritated it. As the summer went on, the rash got worse. It was raised and very sensitive to the touch. I was getting really worried that it wouldn't ever go away.

Next week-Vasculitis and Pregnancy