Since I last blogged lots of stuff has been happening. My job at TCH ended because I could no longer do my job due to physical demands of working in the ICU setting and on night shift. I was devastated; felt like a failure. But I knew that I had to make a change or my nursing career would be short lived. In December I was hired for a position at MD Anderson Cancer Center. To be honest, I never thought I would work in oncology nursing but it was an available position and so I took it. I am working on the Stem Cell Transplant unit. I have been learning so much and have met some really great people. So, so far so good.
Last night as I was lying in bed having a full body RA flare and a migraine when a level of frustration hit me that I knew had been fast approaching. I was exhausted from a days work, disappointed that I yet again could barely walk up right, in pain of course, but mostly frustrated. I was frustrated that my head was pounding and I was fatigued from a treatment that is suppose to make me feel better. Frustrated that I was no longer in control of my body and needed help. And frustrated that it was yet again another bad day. You know the kind of frustration that makes you want to throw something.....but wait, my arms hurt too bad to be throwing anything. And in that moment, lying there in the dark with my body in just the right position to cause the least amount of pain and promote the most comfort, I knew there was only one thing that would help me with the way I have been feeling lately. And that thing is to write. I knew right then I needed to let it out with words on a page, or screen for that matter. A common term for a stress reliever is an "outlet", and it is clear to me now why this term applies. For me, writing is my chance to finally exhale after holding my breath and pretending to be OK in front of others. So I have set a goal to blog once a week. Because I need to learn to exhale more often. Lately all of my joints have been an issue. Mainly my hips. The pain is awful and constant. I have honestly lost count of how many treatments I have tried and failed in the last 3 years. I recently started a new treatment called Orencia. You may have seen the overly corny commercial on tv about it with the slogan, "O yes I can!" That commercial makes me want to say some not so nice words. The Orencia treatment is by IV infusion. I had 3 loading doses all 2 weeks apart. And now I will get a treatment once a month. This drug takes a particularly long time to reach a therapeutic level that is effective. So I am not expecting any results any time soon. My rheumy said it will be about 4 months before we know if it has started to work. So again I wait. I could lie and say that I am still in "keep hope alive" mode. But I am not. I have my doubts; can you blame me. Only time will tell and for the record waiting sucks !!
To start off a new song playlist I have chosen Be OK by Ingrid Michaelson. I find myself singing this little simple song in my head as I get up in the morning. As if it were a prayer, a plee that I just might be OK today. That maybe only a few joints will hurt and that the pain will be minimal. I sit up on the side of the bed, close my eyes and say Lord just help me to get through this day. Or sometimes it comes out more like Damn it please just let me be OK for once. I am still waiting, impatiently waiting for the day when everything will just be OK.
"I just want to be ok, be ok, be okI just want to be ok todayI just want to be ok, be ok, be okI just want to be ok today
I just want to feel today, feel today, feel todayI just want to feel something todayI just want to feel today, feel today, feel todayI just want to feel something today
Open me up and you will seeI'm a gallery of broken heartsI'm beyond repair, let me beAnd give me back my broken parts
I just want to know today, know today, know todayI just want to know something todayI just want to know today, know today, know todayKnow that maybe I will be ok
Open me up and you will seeI'm a gallery of broken heartsI'm beyond repair, let me beAnd give me back my broken parts
Just give me back my piecesJust give them back to me pleaseJust give me back my piecesAnd let me hold my broken parts
I just want to be ok, be ok, be okI just want to be ok todayI just want to be ok, be ok, be okI just want to be ok today
I just want to feel today, feel today, feel todayI just want to feel something todayI just want to know today, know today, know todayKnow that maybe I will be okKnow that maybe I will be okKnow that maybe I will be ok"
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