Christmas 2007
Well, it's that time again! We did the annual Christmas picture this week. What a great time! The boys handle it so well. Even the Dylan the dog posed for the picture. Get out the camera and everyone poses! Usually Jeremy and Jermaine pose nicely while Aaron gets yelled at for making so many weird faces. His fake laugh is scary!
It's been a strange December. Teenage kid problems and health problems.
This week I was diagnosed with Sjogren's Syndrome which is an autoimmune disease. I may also have lupus, but the rheumatologist is running a few more blood tests to be sure. I have many symptoms of both diseases.
It's been a long road getting this diagnosed, but I feel relieved to have a name to go with everything I have been going through. But even though it seems like it took forever to get here, I was pretty lucky. Some people go years and years and years trying to get somewhere with a multitude of symptoms that are making them miserable.
My worst symptom--and "worst" is a relative term--is aching hands. For about eight years my hands have hurt. Writing is impossible for any length of time. When I was working, I had to do case notes on the computer because hand writing them was painful. I had xrays--they were clear.
Three years ago when I found my birth family, I found out that I have a family health history full of autoimmune diseases. My mother, her identical twin sister, their sister, cousins, sisters, brothers...all have some autoimmune dieases. Lupus, scleroderma, rheumatoid arthritis, celiac disease. My doctor ran some tests and came back with good news--no autoimmune diseases.
But at the end of the summer I started have strange aches and pains. My hands were both hurting (before it was primarily my right; I am right-handed). Sometimes the pain was so bad I just wanted to sit in a chair with my hands in my lap. At night it was hard getting comfortable because my hands couldn't find a comfortable position. Then my knees...my feet by my toes...my hips. Everythis was hurting!
Again, it wasn't excrutiating. Just uncomfortable and annoying. Hard to sleep when you sleep on your side and both hips hurt! I mentioned it to my sister Jamie who said the symptoms were similar to her own and I should see a rheumatologist.
First I had a regular check up with my internist. She assured me I couldn't have rheumatoid or lupus because my tests had come back negative. She sent me for foot xrays and a carpal tunnel nerve study (which is actually a pretty cool procedure-yes, there were needles but they were tiny and painless!). The feet xrays came back with heel spurs and I got a referral to a podiatrist. First of all, my heels don't hurt! And I'm not getting orthotics.
The nerve study came back negative for carpal tunnel and with the diagnosis of arthritis. The neurologist who did the procedure had asked while he was examining me if I had ever been to a rheumatologist.
Instead of going to the podiatrist, I went to see a rheumatologist. When I made the appointment they told me it would take an hour to do. And it did. I spent 20 minutes with the nurse going over my health history. Then the doctor came and he talked to me about symptoms. Then he did a physical exam. I had to grab his fingers, move certain joints, bend over. He told me he hopped I got my father's autoimmune genes and not my mothers. Gave me an order for blood work and knee and hand xrays and told me to come back in a week.
They took six vials of blood. I watched those tubes filling up and started to freak out. The xrays were interesting. I am so amazed with medical procedures. The equipment is so...scientific! And I am always impressed with the technicians. I wonder about their training and what made them get into the field.
The week after the tests I was afraid of two things: they would find something wrong or the rheumatologist would tell me I was a hypochondriac and send me on my way. I was relieved to find out I am not a hypochondriac.
So what is Sjorgren's Syndrome? It means that my immune system is attacking my salivary glands, tear ducts, joints, and can attack some organs. So far my organs are clear. I have mildly dry eyes and a mildly dry mouth. I have dry skin. I have the aching joints I mentioned earlier.
The good news I did get is that I tested negative for the RA Factor. Rheumatoid arthritis scares me and I am grateful I don't have that!
It's funny looking back and realizing that a lot of things I've complained about over the past years are all part of Sjogren's.
We've reacted as a family with humor. The twins are wondering who will have to vacuum me up when I finally turn to dust. I told them I actually have Showgirl Syndrome and will get great legs and begin dancing about the house non-stop. We went to the store and I handed them something I had touched and one of them grimaced and said, "But you have a disease!" I replied, "It's not a disease, dammit! It's a syndrome!"
If I say anything hurts one of the twins will whisper, "Stage 3 is happening." I've spiraled through several stages these past few days! Jim was appalled when he came home the day I was diagnosed to find us joking. "Didn't you read the website?" I assured him I had. Now he's joking along with us.
The best part is when someone is annoying me I get to tell them to stop because I have a syndrome.
I was prescribed Plaquenil which is an antimalarial drug. It takes a few months to start working but I've been reading that it's very effective.
Today I'm not freaking out. But when I think about my mother's and aunt's deaths from their autoimmune diseases I get freaked out. I'm relatively healthy and now that I know what I have I can work around it.
I hate the cold. Hate the snow. Hate Illinois. I need to move somewhere warm and tropical. Now!