I decided to just bite the bullet. Write it and post it....no looking back. So here it is. A nice, neater version of my life. There is more details but you don't need to read them, not yet anyway. And I am only doing this because I believe this is cheaper than therapy. You are my therapist. My support system. You have my back, right? I can whine and complain and you will still love me, right? Gee, I hope so. We have a long couple months ahead.....
Remember in High School Health class when you learned about the Immune System? It's the part of your body that attacks outside stuff like germs, bacteria, etc. In most people it does a nice, quiet job and no one even notices it. But not me. I have an Auto-Immune Disease, which means my body attacks itself. I have Sjogrens, which is like Lupus's drier cousin. I say drier because it attacks your moisture producing glands first. In some (most?) people it stops there. Some people just have dry eyes or dry mouth. Not me. I hit the jackpot. Mine affects my entire body. And Sjogrens brought along its bald-headed step child Fibromyalgia to the party. Yay me! Ugh. So what does this mean for me. Pain, lots of pain and disabling fatigue. Think Mono....but WAY worse. In the 2 1/2 years since I got sick I now have slight eye damage, have lost 5 teeth (when your mouth is dry it decays your teeth at a very fast rate), arthritis in just about every joint, unbearable fatigue and pain. Muscle pain and joint pain. EVERYWHERE. I spend all day everyday in pain. It sucks.
Now....for my upcoming treatment changes. Currently I am on million and one different pills each day. ok, maybe not that many but close. I also take Enbrel shots twice a week. I started these back in September and they have helped. They have lifted a lot of my brain fog and eased the fatigue. I still have to nap everyday and pace myself but I can see a difference. Woo hoo...right? Wrong! My Rheumatologist is taking me off. My PCP jumped the gun when he put me on it and my Rhemy is NOT HAPPY. So next week I go to my PCP and stop the Enbrel. Then I have to wait nearly 2 months before my next appointment. Where I will be starting Methotrexate. Which is a cancer drug. And it scares me. I am hopeful that it might help. But I am still scared. Scared that it wont help. Scared that it will, but I will also loose my hair. And I am totally petrified of my nearly 2 months without Enbrel before I start the Methotrexate. Before Enbrel I could barely function. So what happens after I come off?
One more issue to throw in this mix. I have the big E. Which is mostly controlled. Mostly. But when I started Enbrel it threw my body for a loop....and I had 3 seizures. So now what? Will I have more when I come off? Will the Methotrexate cause any? So many questions.
- Denise @ Sunflowers, Chocolate and Little Boys
- Im a Christian Stay at home mom...that means I am a professional multi-tasker and I give all the credit to Jesus. I am married to my best friend and have 3 wonderful sons. God didn't promise days without pain, laughter without sorrow, nor sun without rain, But he did promise strength for the day, comfort for the tears and light for the way.