Monday, 29 December 2014

Three Months Post Enbrel

I hope everyone had a great Christmas. I certainly did.

Though I've had so many new experiences in the past few months, I don't feel as if I should write about them until I address what's gone on healthwise.

 With the last rheumatologist I saw telling me I was in perfect remission and perhaps the pain was just normal muscle ache, I've been a little confused. I even began to question whether the pain I've felt is real or not. Maybe I am normal and I have a very low pain threshold.

 But with my Enbrel (which kept my joints very well under control) being discontinued, my body has steadily given more 'proof' that it is indeed not in my head. I never use to notice swelling on my joints, so I'm not sure if I ever did swell before, but I certainly swell now. My ankles are now cankles. My jaw swells a little as well- my professor once excused me from lecture because she noticed it and didn't want my jaw to suffer in class. Pain in my joints has become sharper more frequently now. I notice myself limiting movements in my shoulders, and my elbows become very stiff and painful quickly. One time I wanted to break down crying it hurt so much. Drawing with an easel has become challenging, but I have found new ways of propping my arms up. On top of all of that, I'm so much more tired.

To sum it up, I just don't feel good. I don't want to go shopping. I don't want to climb the stairs. I don't want to entertain company. I just want to lie down and sleep and be warm.

I try not to talk about this much and just suck it up. I feel bad because lately I'm often in a bad mood. It's just that when you feel like your back is a metal rod, it's hard to act pleasant. I'm guilty that I've put others in a bad mood because I've been bitter. It's hard to tell (or warn) someone that you're hurting, because we're all hurting. But honestly, I just want to scream out that I don't feel good.

2 comments:

  1. Oh, Elizabeth! I can't believe that your new doctor just discontinued your Enbrel, just like that! How could he not understand that if your disease seemed under control, it was BECAUSE of the Enbrel, not in spite of it??

    Unbelievable. Can you request a different rheumatologist? Can you get in touch with your old one for support or help in having this changed? I feel so bad for you. What a miserable way to start the New Year--in pain, and without much hope of relief.

    My heart goes out to you. Please don't take this idiotic doctor's abuse. Talk to your family doctor, at least, for some help? In the meantime, I'm sending a warm hug your way, along with calm, comfort, and peace. Please let us know how you're doing soon?

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    1. Thanks for the warm hugs Wren, I certainly need them. Fortunately I am able to go see a new rheumatologist, and will be going to see her in the coming weeks. I'm praying she works out. I'm also praying your elbow feels better soon! I hope the band and salve is helping. :)

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