Update on Doctor's appointment and first meeting with Case Nurse Manager.
 

I was seen by my doctor yesterday and "examined under a microscope" by my newly appointed case nurse manager. I understand that she is hired by the insurance company to help manage my "care", but it feels awkward having someone taking notes on my every moment, questions, etc.

I had a laundry list of things I needed to discuss with my doctor prior to my injection, and in the mist of things of course the case nurse piped in and asked about physical therapy. My doctor and I had already discussed physical therapy, but she didn't even give me a chance. Grrrr - it made me feel like I was a child and unable to seek or ask questions. While it was nice that the doctor stuck around a bit more before my procedure, it was clear that the staff was not too thrilled by her presence.

My doctor and I discussed the newest medication - Clonidine patches - that he had prescribed to help with the pain. I had broken out in a horrible rash and my husband had to remove it after 3 days. I found out that this could have been what lowered my blood pressure (one hundred and something over 44!), so he is going to prescribe the pills. I'm going to call my primary care doctor this morning and get scheduled for blood testing, and I will ask her if it is wise to continue with the Hydrochlorot that she had prescribed recently for my high blood pressure along with this new medication for pain. I felt awful with the patch on, and now I know why. I was super tired and extremely cold.

In my phone conversation initially with the case nurse, she had asked me about obtaining a second opinion. I expressed to her that I currently can barely ride to my doctor's now. I had told her that I also was concerned with my aftercare, would my current doctor still see me in case of an emergency, would they still help with the programming of my stim. I told her that my husband had discussed with my doctor that if they can't figure out what is going on, to refer us to University of Michigan. U of M will see me, but only with a referral from my current pain management doctor (a primary care referral will not work). She was speaking about the Cleveland Clinic which is much farther away. I told her that I had heard great things about Cleveland, but how would I get there right now? Who would see me locally, or would I have to make a trip there every time I had a problem or needed to be re-programmed? I also told her I couldn't just pick up and leave, as I have two teenagers (17 and 16) and I do not feel comfortable going out of state and leaving them alone.

So, while I was in being "poked", she was pressing my husband again about going to Cleveland. I understand her positioning on this, I know I sometimes doubt my doctor, but I also know what I am capable of doing right now. I wasn't home two hours, and I had an email from her with the hospital's phone number. I want to get better, who doesn't - but I also want to be assured that if I go, it won't be the usual "well, it's RSD - your current treatment plan is what we would do, blah blah blah. I will call them today, but I hate being "pressured". I had sent them information last week requesting an appointment, so she just needs to back off - it may be the insurance company's money, but it's my body.

So, I had a horrible time sleeping last night. I finally feel asleep on the couch at about 1:00, but was wide awake at 4:30 unable to go back to sleep. My doctor did forewarn me that this injection might make me unstable, more painful and could cause my legs to go out. He and I also discussed how I can still only use the stim when I am sitting perfectly still - any movement and it's all over. We also discussed the chest wall stimulation. Right now, we are going to leave the unit off and start the physical therapy to help de-sensitize my body. We are going to look at removing the stim in the future, but right now he and I both feel that another surgery would pose additional problems.

So, life is just great. I am sitting watching the world go by.