As you may have notice by my lack of posting, I'm not doing so hot.
I have a marathon of doctor appointment this week and it just keeps getting more and more depressing. Cortisone shot in my knee on Monday, sign up for a endoscopy on Tuesday, Orencia infusion and an appointment for an injection in my TMJ on Wednesday and I'm only half way through the week.
I'm on my second infusion of Orencia and it doesn't seem to be doing very much. In fact, both my left elbow and my left knee are bothering me and I can barely get my mouth open. I'm feeling pretty lousy for having $8000 worth of meds running through my veins.
Dr Angry managed to, well...make me angry this week. When I went to see him about my knee and asked for a cortisone injection (my knee is sticking...it gets stuck in the bent position) he looked at me and gave me a big smile and said "You know I don't want to do this, right?"
I know it's stupid and petty to be upset about this but I really am. One of my first memories of dealing with my RA as a kid was when I was 10 years old. I had "fluid on the knee" and my rheumatologist was a real bastard. He told me to lay down on the table and that it wasn't going to hurt. He then proceeded to stick the biggest hypodermic needle into my knee to drain it as a nurse held my legs down.
As you can imagine that is not a fond memory. I wasn't much wanting to "do this" either. As Dr Angry was prepping the area doing figure 8's on my knee with betadyne I was doing everything I could not to panic. He joked "don't kick me" and I thought wouldn't he freak out to know that I was more worried about throwing up on him.
I have more and more joints becoming involved and I'm stuck between one doctor who says it's that doctor's resposibility and the other doctor who says the same. In the meantime I'm the one stuck in the middle.
My back still isn't fused, we'll find out about my ankle on Friday and my arthritis seems to be out of control. The one sure thing I know is that I can't handle to much more of this before I completely lose my mind.
My parents picked up Hope from school yesterday and when she got in the car she asked my mom if she had spoken to me. She said yes she had and that I was ok (she knows I'm doing a lot of doctoring this week). She turned and looked at my mom and said, "are you sure she's ok...sometimes mommy says she's ok when she's really not."
My 8 year old could see what an adult doctor couldn't (or didn't want to bother too). I hate that, I hate that my little girl gets it. I hate that she has to go through that. When we thought of having her we were concerned with passing on RA to her, it never occurred to us that my health would have so much effect on her life.
She sits by when I lose the ability to do things like cook dinner, walk to the bus stop or hold a book and notices them all. When she sits on my bed as I'm aching and says, "mommy when your body heals you and I are going to go to the mall" I wonder if I should lie and say "yup, it's a date" (and I do) or if I should just tell her the truth that I feel like I'm never going to get better.
I just want to find a doctor that is going to be aggressive and that doesn't mean 8 million surgeries or 500 cortisone injections. What is the point of living forever if I'm going to hurt every moment I spend alive? If I have to give up 10 years for a little quality time, that seems like a pretty decent compromise (remind me of that later).
So Dr Angry is going. I'm going to start with the office that I had my foot surgery through and see if I can't find a little relief with a whole less arguing and personal opinions.
So again, I start over....and I'm tired....I'm so very tired....