Wednesday, September 15, 2010

Reposting this note I put on Facebook today:

It first started just over 10 years ago. A couple of weeks after David & I got married I was in and out of the doctor’s & ER with chest pain. I had several tests done, my heart & lungs were normal, so there was no explanation for what was going on.

One month after it all started, I was talking with my mom & she asked if they had tested me for Lupus. At that time Lupus was a disease my mom had, that is all I knew. So I went online and did some of my own research. I learned that I had 7 of the 11 symptoms, the only thing missing was a blood test to confirm the diagnosis. I headed to my doctor’s armed with new information and the request for a blood test. I was surprised to find that it took her some serious convincing to get her to order the test. She told me I was too young and that even if the test was positive it was highly unlikely that I have this disease (I was 22 at the time).

The ANA test takes a week to come back and I anxiously awaited. When I got the call that it was positive I immediately made an appointment with my mom’s rheumatologist, the best in the state . We discussed my symptoms and took more blood and moved on with the treatment.

During the first 3 years I took drug after drug, none worked. At one point I was on such heavy doses of steroids that my liver started to have issues- not to mention the weight I had gained. So I finally stood up and said enough. The put me on oral metho and the side effects were so bad, but at that time I lost my medical insurance, so I was on my own.

I then took a couple years off with no treatments for my lupus, I was in severe denial. Someday I may regret that denial, but for now I am learning to live on medication. Learning that pain is a constant and to stop blaming my pain & to stop making excuses for every little pain, or side effect to the disease I face. I know I can survive this, and I know I will survive this but it is only with God’s strength & love that I can get out of bed each day

Now I am back on trying new meds and seeing what works and what doesn't. I still refuse steriods, even though my doctors always mention them as a first step to whatever is bothering me. I am living my life trying not to make "Lupus" define my life. Yes, I should probably slow down, yes I should learn to say no more often. But for now I am going to continue to do what my heart wants with the amazing support of my husband and family.

So today I post this note because on October 16, 2010 is the annual Seattle Mad Hatter, Walk, Run & Roll for Lupus. This walk is importnat to me on so many levels. One, I am on the planning committee and it's something I am passionate about. Two, It is an amazing feeling to see so many friends & family come together for me and Gracie. The support I feel on that day gets me through so many bad days. and three, it's a good cause. One that doesn't get much attention but needs it. There hasn't been a new drug to treat Lupus in over 50 years! It's time to start standing up and making a difference in this disease!!

I hope you can join our team and walk with us on Oct 16th. if you can't, would you consider donating to our team