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.

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.