I'm well aware that there are plenty of Lupus blogs out there. But, as I was lying awake last night- frustrated by a flare and the ineffectiveness of the Vicodin I finally caved in and took- I decided that I needed an outlet to discuss my journey, so here we are.
I began showing symptoms at age 12, while I was in middle school. It began with Raynauds (sensitivity to the cold with my blood vessels constricting) and fatigue. I was playing tennis and it began to interfere a bit. Wearing gloves and holding a tennis racket isn't exactly easy.
As I grew up my symptoms continued to evolve. Joint pain began eventually, along with muscle weakness. I began experiencing "flares"- periods of time over the course of a couple days to a week where I would be extremely tired and achey. But, I had no idea what they were. As a teenager, this was hard to deal with.
After meeting with a few doctors who insisted that I was a hypochondriac I was eventually referred to Shriner's childrens hospital in Spokane, WA. My doctor was Meredith Heick and she was the first doctor who actually explored why I was feeling the way I was. After some tests and a list of my symptoms was gathered she decided that I had "lupus-like" symptoms, but left me with a diagnosis of being ana positive and having some sort of auto immune disorder with a definite arthritis component. I was lacking the definite "butterfly" rash and Dr. Heick didn't want to give me a diagnosis that may make it difficult to get insurance later on.
Of course, lupus is what I had and what I still have. My current physician, Dr. Mansour of Cameron Park, CA (Marshall Rheumatology) basically told me "duh" when I told him that I hadn't been diagnosed but most doctors were leaning towards lupus. So here I am, 22 years old, with lupus.
I have been on a series of medications during this journey. To begin they were just treating my raynauds and my pain. I took niacin for a short period of time, supposedly to help my blood vessels. No matter how small the dose my body would flush bright red and I would feel warm to the touch. Not great for self-esteem in eighth grade, I can assure you.
After being referred to Dr. Heick I was placed on Vioxx. This was my miracle drug. Flares occured rarely and I could be a teenager. I played tennis, I exercised, I ran- it was like lupus never happened. Eventually, as many of you may now, Vioxx was pulled off the market. I hurridly switched to Bextra for as long as I could until the FDA realized that Bextra had the same terrible side effects. For awhile I lived off remaining Bextra samples I could find from friends' parents or family members. And then I ran out and was left with Tylenol.
Our next shot was with hydroxychloroquine. I'm still on this medication to this day. It works pretty well for me, most of the time.
So, this blog is going to be my journey and a way to share my progress and my regressions. I have chosen the blog title because of my recent struggle with my disease. Over the past year I have lost a lot of my strength. Each time I make progress- losing some weight, getting stronger, exercising regularly, keeping a clean house- it seems that I get sick or have a flare. I then back off, relax, and regress. Then I start at the beginning again.
DISCLAIMER: I should mention that everyone is welcome to read my blog. Friends, family, and strangers are all allowed to comment and to follow my posts. However, I am going to be frank with my symptoms and my beliefs. I may whine, I may swear, and I may talk about how lupus is impacting my life. As a warning to my family members who are squeamish about any discussion of sexual related matters- I may bring up if my symptoms are negatively impacting my marriage or if I'm having concerns about our future as parents. I'm not ashamed to share these things, I hope you won't be ashamed to read them.
I look forward to having an outlet.