No cooking for me, and no good food either. I'm laid up in St Mary's Hospital in Rochester. My doctor called yesterday and asked me to come up and see him. He wasn't even taking clinic patients that day but was doing scopes, but asked me to come in at 5pm and see him at the end of the day. Seriously. He's a Mayo clinic Dr. Mayo clinic! And he still always takes that kind of time to see me.
My number one, all time most important piece off advice for anyone dealing with a chronic illness, get a great doctor. If you don't like your doctor, fire them. There is no reason what so ever for you to have to deal with a doctor that you don't like or don't trust. I have fired 4 doctors, but now I have one that calls me in person, and takes me in after hours because he wants to physically lay eyes on me to see how I look and how I am feeling. I like him, and I trust him, and that goes a long way towards going forward with my treatments, I'm not always 2nd guessing and questioning a doctor I don't think has my best interests at heart. So please, please don't be afraid to fire your doctors and find a new one, there a lot of them out there and someone is going to be a good fit for you. Don't be afraid to look for them, and it's OK to let them know up front that they are applying for a position to be your doctor, that just because you are there they don't just get the job. They have to earn it.
So today I am sitting in St Mary's waiting for a catscan of my belly to see why I'm having so much pain. They have done lots of blood tests looking for where the fever is coming from. They are also taking me off all steroids - at once. No weaning down. This scares me a little as I have always heard you can't do that, that you have to wean down gradually. They said beings I am in the hospital where they can monitor me they want to just take me off them. They want to see if I get my muscles back and they don't want to wait two weeks to be sure that I'm going to get my strength back. Also they think the steroids are just causing to many other things wrong with me, like the fact I also can't feel much of anything. Like I can't feel needles, which is good because my veins are turning to crap and they miss more times then they hit them. They can dig around in my arm all day and I can't feel a thing, but I also can't feel how hot water is, or if I have a sun burn so I have had a couple of burns over the last week.
I'm hoping to be out of here by Thursday but I'll keep you updated.