Jan. 1, 2011

Hello everyone!
I type this with swollen fingers and very tight hands. I have cut back my prednisone by another 2.5mgs starting this past Wed (Dec.29), so this now makes my prednisone intake 12.5mg a day. Wednesday was the same day that I had my 2nd Remicade infusion.

I'm going to just keep this post straight forward to my symptoms and how i'm feeling- sorry but my fingers and hands really do hurt.

• I have felt that I have had something stuck in my throat for the past 2 weeks or so. I went to the GI dr on Tuesday. I have to have a dialation surgery in Feb. This is mostly being caused by the prednisone. The steroid apparently relaxes some muscles (one of them being the top of my stomach) and is allowing acid to come up into my esophogus, causing scar tissue. great huh? so they have to go in and remove the scar tissue.
• I'm trying so hard to put up with the pain, swelling and tightness in my hands, feet and knees. The prednisone is the answer, but its not an answer I want to take. I want off this drug. I went to walmart the other day and literally started limping when walking in the store. Some people literally got mad at me bc i wasn't walking fast enough, so they ran into me! WOW. I was beside myself. When I got home, my knee was swollen twice the size of normal- atleast twice the size.
• My remicade infusion was on Wed. They gave me tylenol, benedryl and a steroid before the infusion. I slept for about an hour of the infusion. No headache like last time but I have had to take tylenol every 4 hours since (and now its SATURDAY!). OH, and the steroid- talk about a DOUBLE whammy of appetite. If I thought the prednisone was bad, a double steroid was HORRIBLE. I swear I ate FOUR dinners that night! and my appetite is just returning to "prednisone normal". lol
• Yesterday, NYE, I cooked all day and ran around. By the time we sat down and ate dinner at 8, I couldn't walk. My feet and knee were so swollen. I had to take a pain pill (tramadol) and a glass of wine.
• I met an older lady when I was getting my infusion. She has had RA since the 1980's. We started talking about how I couldn't wear my wedding rings because my fingers were so swollen. Then I looked at her hands. Her fingers were literally sideways. I almost cried. We started talking about how it happened. It just happened about a year ago, and it only took 3 months for her hands to get like that. WOW. She basically woke up one day and one finger was like that and then the rest. So, yeah, i'm afraid of that. I attached a picture of what her hands look like. :(

Happy New Year everyone. I hope this note finds you well.
Thank you for reading my notes and staying informed. I hope that my notes are helpful to you or someone you know. This journey has definitely been interesting.

PS. Marissa asked me yesterday if I'll ever get better and stop going to the doctor all the time.  I started to cry and said, " I promise honey, I will be better than I am now." My God how I wish I had my old body back.

<3
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