Wednesday, 17 December 2014

Grown Up

It's been a little while since I last posted. Sorry about that, but I've been very busy!

My life has been non-stop since September when I went off to university. Yes, your little girl with arthritis is all grown up! Sort of. Kind of. Not really. Regardless, my life has been flipped upside down and I couldn't be happier- I'm studying at a wonderful school, surrounded by wonderful people in a wonderful city. It's wonderful. I've enjoyed the past few months very much, and am excited to return again after Christmas.

I've only just returned home for Christmas the other day, and thankfully have a few weeks before my next semester. Though I love my busy life, I need time to unwind and relax. Quite a lot has happened, lots of great things but a few other things that are not so great. One of them was my rheumatologist leaving to work at another hospital.

My new rheumatologist shred me to pieces. In only five minutes he told me I was in remission because my hips were so well controlled. He told me that whatever other pain I have is in my head. Then he did the unspeakable: He decided to stop my Enbrel. In a matter of five minutes, this man decided to destroy my life.

I've been fine for the past few weeks thankfully. Once you've begun Enbrel and had a positive response to it (like I had), you can usually retain you're current state for a few weeks before the arthritis flares again. The past two weeks I've been taking ibuprofen to control the inflammation and pain. Unfortunately, it's not ideal with my kidneys but it's the only choice I've had. Especially as my tramadol does not reduce inflammation, and I've found lately gives me awful side effects like dizziness and anxiousness.

But its really caught up to me now, six weeks Enbrel free. Everything hurts or is tender, even joints that didn't hurt so much before. I can now add in shoulders and elbows onto the list of joints that hurt. I've really lost my appetite, and I'm getting the flank pain I got when my kidneys weren't happy.

With Christmas coming, I'm trying to remain positive. Though I mainly hung out on my couch today, tomorrow I would like to clean, wrap some presents and make some cookies. I don't really want to concern anyone at the moment, so I've been quiet and haven't talked about how I really feel. Though I suppose this post ruined that effort with my mother (hi Mum), it just feels good to let it out. Here's to a better tomorrow.

4 comments:

  1. It's so good to hear from you again, Elizabeth! I missed your thoughtful posts, and I was worried that you were ill. Instead, I learn that you've been having a wonderful time as you start your new life as a university student! That''s SO great! Here's wishing you continued success and happiness in your endeavors.

    I was dismayed to read that your new doctor stopped your meds. And angry on your behalf that he said your pain was "all in your head!" How dare he? RA is a serious disease that's hard to control and does terrible damage to the body, even when it's "under control." I'm flabbergasted that he would stop treating you.

    Have you considered asking for a change of rheumatologists, or talking to your primary care doctor about what to do? This is just awful. My heart goes out to you.

    So, I've said my piece. In the meantime, I wish you and your family a very Happy Christmas, with all the joy the holiday offers. And here's wishing you a joyful and engaging New Year.

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    1. Hi Wren! I'm in the process now of looking for a new rheumatologist. Even though I'm in school not far away from my hospital, I had to wait to come home because I want to talk to my primary care first. I'm hoping she can refer me to an ideal rheumatologist. I really need someone who is used to dealing with juvenile onset as well as psoriatic arthritis- unfortunately very few deal with psoriatic arthritis properly.

      Happy Christmas Wren! And a very happy new year!

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  2. Hello,

    I love your blog! It seems like you have such tenacity and spirit in all your posts! I am 28 with JRA since 1 year old and just started my own blog. I know know college was one of the hardest periods for me physically and I wish I had had the guts, like yourself, to share my experiences. I look forward to reading more! Check out my blog at allgrownupwithjra.blogspot.com

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    1. Hi! Thanks so much!! I've read your blog and I like it- definitely keep writing :)

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