Friday, June 26, 2009

Bill's MRI finally made it to MDA today. That is two weeks since I sent it. But that happens every time I send something there. I always think, I'm in Kansas, there is only Oklahoma between me and Texas!! What can possibly take so long.
But anyway, it's there now and we can get on with the business of setting up surgery. This sounds really stupid, as it was only about a year ago I did this for the kids, but I really can't remember how this all works. I can't remember what tests need to be done pre op. Guess I'll find out.
Lately I keep looking back over this long Cushing's journey we've been on. My feelings change - a lot. Mostly, I'm thankful that we've come as far as we have. Other times I just get angry and wish that none of this had never happened. Then I think of all the knowledge I've gained. Of course most people go through their whole life and have no need of this knowledge!
I've changed in so many ways. Probably the best is that I have learned to stand up for myself, or in this case for my family, pretty much the same thing though. I couldn't do that even three years ago.
At the moment I'm writing a letter in my mind. I need to send it to our (now) PCP. He was our PCP back when I was first looking for answers for Justin's health problems. He was the first doctor to dismiss the problems. He had a comeback for everything. So we moved on, as I was determined that someone would take us seriously.
Through a turn of events in the medical community, we recently had to change PCPs again and are right back where we started. Dr. M may be on the way to redeeming himself. He did pretty good with Jess while she was in the hospital. And is following up with her.
During one of her hospital stays, the subject of Justin came up with Dr. M. He asked how he got a diagnosis and if he (Dr. M) had missed anything. I couldn't really say much when he asked as he was making rounds and had all the troops with him. It just didn't seem like a good time to tell him that he missed all the obvious, central obesity, moon face, stretch marks. And those were just the physical symptoms.
Also, I have a hard time saying things like that in person. But if we're going to continue to be in his care, I really need to get this off my chest. I want him to know that he really should have paid more attention to Justin and me. Please, don't be so dismissive of your patients.
I have to get it on paper and then actually mail it. I think we'll have a better "working" relationship once I get it off my chest. Of course an apology from him would go a long way but I won't hold my breath.
Another thing I learned through all this, I no longer just follow the doctor. Funny, I did for years with my own health though.

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