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Monday, December 22, 2008

Finallly...A Diagnosis...

Hi Friends and Family! It's been crazy around here and I've hardly had time to breath let alone post. We'll see if we can get that taken care of now.

As most of you know, I've had some chronic health problems for years now. I've been told that I have everything from chronic sinusitis to Epstein Barr to chronic gum disease. While I have the symptoms of most of those, that didn't explain the low-grade fevers, hair loss, swollen hands and feet, joint pain, and ever-present and debilitating fatigue. I've been a real pest to my family doc and had all kinds of tests but nothing definite came up.

Aaron's company does annual blood testing as part of their wellness program. We go every year, get our blood drawn, and then get the results soon after. When I tell the nurse that I have heart disease in my family they do a test for C-RP or Cardio Reactive Protein. It's a protein the liver produces when there is inflammation in the body. It doesn't tell you where the inflammation is, just that it's there.

Healthy people should have a C-RP level below 1.0. Low to high is 1.0 -3.0. Mine was 5.8 This is the third year running that my C-RP level has been really elevated so I got online and started researching C-RP and found several mentions of Lupus as a cause. (The Lupus arthritis causes the high C-RP level.)

I really wanted a correct diagnosis finally, but I know too much about Lupus to want it be that. Long story short, it is that. I told the doctor I wanted a blood panel done for Lupus and after getting the results he called back saying I have the early stages of SLE or Systemic Lupus Erythematosus.

In a nutshell, Lupus is an autoimmune disorder. Here is the definition from the National Lupus Foundation:

"Lupus is an autoimmune disease that can affect various parts of the body, including the skin, joints, heart, lungs, blood, kidneys and brain. Normally the body's immune system makes proteins called antibodies, to protect the body against viruses, bacteria, and other foreign materials. These foreign materials are called antigens.

In an autoimmune disorder like lupus, the immune system cannot tell the difference between foreign substances and its own cells and tissues. The immune system then makes antibodies directed against itself. These antibodies -- called "auto-antibodies" (auto means 'self') -- cause inflammation, pain and damage in various parts of the body."

I keep trying to link to the site, but I'm having technical dificulties. Here is the address, you all can copy and paste it to your browser.


It's been really helpful to me to understand the disease and to know how lucky I am to have such a mild case of it. I don't want anyone to freak out or anything when they read about Lupus, keep in mind that my case isn't too bad right now.

What this diagnosis means for me is finding out all I can about the disease, getting to know some new doctors, lots of tests, and hopefully managing the disease and my life better. I've been living with this undiagnosed for many years now, so this is really a good thing! I want to be proactive and be as healthy as I can be under the circumstances and now I will have the tools to do that.

To all of you who've been so patient and supportive of me when I had to drop out of life for a while (now I know that those times where the Lupus flaring) I want to say THANK YOU! Also, I told you I was sick! Just kidding. :) I know how hard it was for you to rely on me and me not be able to fulfill me obligations at times. Thanks for loving me anyway!

I'll keep everyone posted but I hope that life will only improve for me and for our family.


Julienne said...

Wow, I am so glad you were able to figure out what was going on. In a way it is empowering, knowing what your body is fighting and how to deal with it. I am sorry you have these struggles. I am amazed at what an amazing mom you are despite your struggles. Keep it up!!

Sean, Jen and Carson said...

It was so fun to spend some time with you today and to catch up! Love your blog, I've linked it to mine so that I can keep in touch!

christy said...

You've always been such a trooper and so positive! I remember many times over the years, you saying you had more tests done. I'm glad that now you finally know. Not know is always the hardest. I'm not too far away, please let me know if you ever need anything.

I hope that you had a very Merry Christmas!!!