I was diagnosed with Systemic Lupus Erythematosus in August 2008, while I was around 23 weeks pregnant. "SLE" is a chronic, inflammatory autoimmune disorder which can affect the skin, joints, kidneys, and other organs. Because it is an autoimmune disorder, this means there is a problem with my body's normal immune system response. Normally, the immune system helps protect the body from harmful substances. But with an autoimmune disease, my immune system can't tell the difference between harmful substances and healthy ones. The result is an overactive immune response that attacks otherwise healthy cells and tissue.
While in my womb, Hali'a's heart was attacked by the antibodies in my body and that is the reason she has a pacemaker. Hali'a has congenital heart block. The chambers of her heart cannot communicate with each other and cannot properly coordinate the pumping of her blood. The pacemaker does the communicating for her which allows her to live a pretty normal life.
Although there are many symptoms associated with this disorder, the ones the affect me include Arthritis, fatigue, joint pain and swelling, muscle aches, pleurisy, sensitivity to sunlight, hair loss & numbness.
Since being diagnosed, I've been off and on a variety of inflammation medications to help control the symptoms of this disorder, since there isn't a cure for it. Some medications have worked, some haven't, as far as easing the pain and helping with the fatigue and hair loss. About a month ago I was not taking any medications because I was feeling well. After my blood test results came back with a high inflammation rate, my Rheumatologist put me on very high doses of steroids and other medications to bring the inflammation down. I've been taking those high dosage medications for a whole month and the pain and symptoms only seemed to get worse. The high steroid dosage "helped" me gain weight and gave me a "moon face" and my joints seemed to hurt every day. After taking another blood test and seeing my Rheumatologist again to check if the inflammation went down, he said it got worse and took me off of all medications.
It's been pretty much a roller coaster when it comes to drugs and pain. I'm trying to be positive through it all, but sometimes it's just hard to keep up with Hali'a when I'm always tired and my muscles and joints hurt. Jon will jump in and take over play time when he sees that I'm having trouble though so that's been good. He's a great husband and father for our family. I'm hoping that things will just be okay with the pain killers I take instead of the steroids and anti-inflammatory drugs I was taking.
I just find it crazy that I've had two medical issues in my life that I can "blame" on my Asian heritage. I know that people of other nationalities get both of those disease/disorder, but my doctors told me that both is very common in Asian females. Don't get me wrong, I am glad and appreciative for my Asian blood, but Kawasaki Syndrome AND Lupus, that's pushing it, right?
Tuesday, June 22, 2010
We had a nice Father's day this year.
Hali'a helped me decorate Jon's father's day present...
I let her choose all the stickers and she was loving the butterfly stickers that morning so that's exactly what Jon got...
Hali'a and I have been blessed with good men in our lives. Jon is an AMAZING father and husband! Hali'a's great-grandpa and grandpas who are still alive are AWESOME!
We love all of you very much!!
Monday, June 07, 2010
The summer has gotten off to an amazing start this year! Seminary is done for Jon so he's been enjoying the sleep he's getting in the mornings. Hali'a and I are enjoying the sunny outdoors and have been on lots of walks and play dates with her friends. You've already seen pictures from her first pool party so here are a few pictures of her ready to go to the primary pizza party...
This is what Hali'a does when you ask her to "strike a pose"
This is what she usually does when she sees a camera, "CHEEEEESE"
She sat by the door while Jon and I got dressed--just waiting to get to that pizza party (which was really fun and yummy)