Wednesday, February 20, 2013

The Waiting Game, Confusion, Emotional Overload

This past few days has been a bit overwhelming. It started with blood test results from the Rheumatologist. My results are moving him to add a diagnosis of Lupus. He also mentioned Sjogren's could be changing to my Primary disease instead of being a Secondary Disease. This is based on major changes in results from when I was diagnosed 25 years ago with RA. I am still trying to process that information, it is not the first time Lupus has been suspected regarding me. In reality my life hasn't changed I feel the same physically. Emotionally I feel like I did 25 years ago when I was first diagnosed. A bit numb, confused, frustrated, alone and sad. I know I will get through those feelings as I always do. I just feel the need to write them down instead of shutting down. I have a tendency of hiding from the world and not talking to anyone when I'm in pain. This is my way of getting it out.

To top things off, I have been in a horrible flare since stopping the Leflunomide. The endless days of pain and swelling have been getting to me, I can almost feel the destruction happening to my fingers and toes. I feel uncomfortable in my body laying down, sitting up it doesn't matter I'm just uncomfortable and I can barely sleep at all. I'm playing a waiting game, waiting for my insurance company to pre-authorize treatment so my Remicade infusions can begin. In the meantime I'm struggling to function at any level. There is no pain medication, if I broke my leg I would be given relief from the pain. My body feels like my bones are broken yet I have nothing to ease this pain.
I am not a crier but this past few days I have cried a lot. That is when you know it is really bad. Some of it from frustration, more of it from the pain.

My husband has been trying to do whatever he can to distract me from this. It takes a toll on him as well. He gets very frustrated watching me in pain and being unable to help me. We spent the other night watching movies.Time like that helps me, it takes me out of my head for a few hours.  (If you haven't seen We Bought a Zoo, it is a wonderful family movie.)

I am trying to keep this blog as positive as I can but this is a blog about MY experience with Chronic illness. Right now is not a good time for me, and I'm going to be real about it. I believe in allowing myself to feel all the emotions I'm feeling and then move on to the next step. I will do what I always do, educate myself, be an active participant in my treatment plan and attempt to kick this in the butt. I have been here before and I will likely be here again, but in the end I will still be HERE.


1 comment:

  1. Keep up blogging! its getting through the tough times that make you stronger and then the good times will follow, keep working about your experiences and we should all pull unitedly.
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