My doctor and I hatched a plan, kidney function tests every 2 months, and to call him IMMEDIATELY if anything I've got going on comes back. We have high hopes of controlling this dragon before he grows into a fire breathing dragon. The goal is to stay two steps ahead of it, keeping me off the major toxic immunosuppressants.
Well ... You know what they said about the best laid plans.
I lowered my dose Thuraday afternoon. Friday morning? Boris was rumbling in my left hip. Friday afternoon? Boris was sucking the life from me (heat wasn't helping). Saturday? Boris bit me in the shoulder.
Today? Boris is gnawing on both hips, ankles, my right shoulder and moving up my collarbone and neck. He's poked me in the eye and lit the furnace in my head on low. (Fever)
I haven't called the doctor. Joint aching is a withdrawal symptom of prednisone. I'm hoping my eye and the fever are unrelated.
But, the truth is, ill be on the phone with them tomorrow. Boris apparently only took a cat nap. He's recharged and hurting me more than he ever has.
I don't exactly know what to feel. I go through so many emotions in a day. Sometimes, I hate what I hear myself saying in my head. Sometimes, I feel like I'm going to fight with everything I have. Sometimes I want to go lock myself in a room far away from everyone so they don't hear me whine, they don't have to hear about this. I am embarrassed at how I look, I'm embarrassed at how I walk, I'm embarrassed for my husband who has to walk beside me.
I want to be faceless in the crowd again. Nothing special. Nothing different. Just an ordinary person with an ordinary life.
I want to go back to saying "yes, despite how I'm fat I'm in excellent health".
I'm scared. I hate how I have to evaluate every ache and pain. I have to look at my pee, inspect my eyes. I'm scared that one day Boris could decide my time here is done.
I'm 33. I'm not a kid but I'm sure not ready to go anywhere. I still had dreams and things I wanted to do. Children? Yea ... I would LOVE to have a baby. Just one. But will I ever be well enough to try? And if my kidneys are at risk with Boris, will being pregnant risk my life? So it's a painful gut wrenching feeling to see babies and things. Such is life though.
I spent 95% of my day pretending there's nothing wrong. I don't want to burden anyone with me. I'm not my disease. One thing I have always been complimented on is my smile, so it's hard to not let that go anywhere. Just keep smiling. Don't let them know you hurt SO BAD. Don't let them know you can't hear well so music doesn't sound the same which makes you sad. Crack jokes, make people laugh. Don't bring them down.
Boris is here to stay. He's incurable. He's an asshole. I have to accept that he isn't going anywhere. This is my life now. It's an adjustment, let me tell ya and its not even as bad as it can be. I'm hoping that never happens but, it's a reality that must be taken into consideration.
However, a wise woman whose smile I miss at work told me I need to talk about things. So, B-Rook, I'm talking. Ill blog once a day to clear my head.
I blog for me anyway. It's not like people are forced to read my whining. But maybe, I can get my fears out of my head, ill shrug off the anger and frustration and be able to continue being a happy go lucky person.
For now, I need to go to bed. I feel absolutely abysmal, and I start with a trainee tomorrow. It's only fair that I bring the best me I can.
(Side note: this all started for me back when I started training Alex.... Thru Mike .... And now Eric. My apologies to them... Only Andy got me with my A-game.)
February 2012. The last time I felt like a regular person. I was down 30lbs. I was working out, signed up for my first 5k, eyes on the bright future I was gonna have. Now?