Dec. 19, 2010

Hello everyone! I can't believe its been 9 days since my last note.

So here's the run down of the week...

Tuesday was my first remicade infusion...and let me tell you, I think I had close to every single possible reaction that was on that side effect paper. UGH. I was fine for the first 90 mins of the infusion, the last half hour was pretty rough. I got a KILLER headache and then my arm started to get really cold, and then chills all over my entire body. I was not given any medication prior to the infusion. I had not eaten since breakfast and it was 1:30 by the time I had finished. So, with my head screaming, I ran to the mall to get some food, thinking maybe that was the partial cause of my headache. I inhaled my sandwhich on the way home and took some tylenol when I got home and took a 2 hour nap. When I woke up, I was operational but still very groggy.

Wednesday was a different story. I had a low grade fever all day, nausea and dizzy spells. It was not a good day. I stayed in bed much of the morning and tried to work in the afternoon. I did call the Arthritis clinic Dr. She said that they will give me medication (tylenol, benedry and a steroid) before my next infusion. I WAS EXHAUSTED on Wed too. I would have to say that the exhaustion from this disease is one of the worse parts. When your body is constantly fighting itself, it gets fatigued. And that's why someone with an autoimmune disease (like RA) gets so sick all the time. Our immune system is always fighting other things (like our body) instead of the bad stuff that's trying to get in (like germs and colds and other serious illnesses).

Thursday was better but still not feeling anything from the medication. My wrists have been flaring for about a week and a half now. I went to a local coffee/gourmet lunch shop for lunch. I literally broke down in tears because my wrist hurt so bad that I couldn't pick up my fork. One may ask, how did this get bad so fast? Honestly, when you have a flare- that's how it goes...it comes and goes- the pain and swelling that is. My wrists are getting worse though. My right much more than my left. It hasn't been normal size for about 2 weeks now and I can't even open pop bottles, or put Marissa's gloves on. :(

Friday was a somewhat "normal" day. We had date night, which I love! We went to Stan Hewitt Hall and then to Luigi's for dinner. YUM-O! ;)  (That's a shout out to my girls!)

Saturday was a VERY busy day. I did so much "stuff" that I haven't been able to do without getting exhausted by 5 or needing a nap by 12. I cleaned, swept, put plastic on the windows, shopped, dishes, washed all the sheets and blankets in the house... It may be a normal Saturday to you, but I have not had the energy to be able to do that in over 8 MONTHS- atleast. I don't know if it was from the Remicade infusion or what, but I welcomed it. I was SOOO happy to be able to feel "normal". I almost wanted to tempt fate and go play soccer but I thought maybe that was pushing it a bit too far on the first night of feeling good. My BFF Jen came over and we exchanged presents too! She got me SO many things to help calm and destress me. I LOVES her. :)

Today, I felt a bit tired. BUT, I did only get 5 hours of sleep. I'm learning that sleep is ESSENTIAL for me. I've read a couple of places that RA patients need 10 hours of sleep a day. If you can get it all at night, fine, but 8 at night with a 2 hour nap is good too. When I'm working, I don't see a 2 hour nap happening but I can try to get some good sleep with my Ambien... Ahh ambien. lol

<span>A couple of other things I have noted since my last blog...</span>
I think that I can tell what joints will have a flare next... I'll be interested to see if my assumption is right. I THINK the joint starts clicking. ie. my left ankle started clicking yesterday. I have had LOTS of time in my life when my joints click. My right wrist is still clicking sometimes, even though its swollen right now. We will see if I'm right. I'll let you know.

I have started to put a stretching band next to the bed for when I wake up. The worse time for most RA patients is right when they wake up. I am slow moving for about 90 mins after I get up. Stretching while in bed before I get up has helped some.

I have been sick with a cold for 2 weeks now. I know the remicade dose is just going to make this worse (my immune system that is). I know that I shouldn't take anything to boost my immune system because that's the whole problem with RA- an over active immune system. That's what Remicade is supposed to rid my body of, so I don't want to ruin that. Oh well, I'll just keep fighting the good fight and I'll kick this dreaded cold sooner or later.

Take care everyone. I hope this Christmas season finds you happy, healthy and wise. :)
As for me, I just want 2010 to be over. 2011 HAS to be better!!!

t