Thursday, February 26, 2009

catchin' up's been a slow, I felt pretty good, but the first three days of the week were rough. I felt so incredibly weak, so drained of any energy to even think or read, that I laid in bed for most of those days. I slept hours and hours during the days, very light but very sweet sleeps.

I woke up in the middle of each night with pain nudging my eyes open, I didn't sleep well, pain kinda does that to a person, huh? I would get up early, feed the dogs, plug in the coffee, turn on the electric fireplace in the living room and then the TV to catch the morning news.

Shootings, stabbings, fires in Portland. Tagging on walls and churches. People driving into buildings (we've never lived anywhere that we see this reported so often. Buildings in Portland do not seem safe from errant vehicles!).

Monday, I took in the jug for the urine test for N-telopeptides. As you know, this is the re-test because the first time came out way too high. I told my husband, when I took the jug into the hospital lab, that this test was a big one. It either comes back showing the first one to be in error, and thus allowing me to schedule the surgery I've been waiting years comes back with some major problems and the fusion gets put on the back burner as we try to deal with what a 2nd test with the same results will throw us.

Today, well, You won't believe what happened.

I had an appointment with a new neurologist. She is in the same office as the neurologist I went to about 18 months ago. I did not feel this gal listened to me at all, I didn't feel a connection that I needed when I'm talking about MY skull base and my brainstem.

AND I went to this office a couple of weeks ago where I felt a bit "rudely treated" by the neurosurgeon there.

But, I feel I need a local neurologist. I don't have anyone close by who can tend to me when I come back from my fusion surgery in NY. If I have any problems, if I have any CSF leaks or problems with the halo, I need someone other than my PCP lined up.

AND I want to verify or rule out if I have Autonomic Dysreflexia. Dr. B, my surgeon, said I need to find this out before surgery. I don't think there are any tests for it, I think you just tell your symptoms to someone who knows what it is, and they can tell you if this is what you have.

So, in talking with my good PCP, we decided maybe I'd try this closer neurological office again, there is one more neurologist in there I haven't seen (the main doctor in the office), nurse wrote in for authorization from work comp, I waited a few weeks and it came back with the okay...set up an appointment, got up early and showered and had my notes all ready for questions for this NL (neurologist-- we sick folks just have to use abbreviations as much as possible!).

I walked in and the waiting room was empty. I spoke with the front desk gal, and was told that my appt was NOT with the NL I had not yet seen, but with the NL I had already seen! The new NL I was hoping to see was out all week.

It turned out that the medical asst arbitrarily scheduled me with the NL I'd seen two years ago and who did not listen to me at all and gave me a prescription for Topamax AFTER I told her (at same appt) that I have osteo and the pre condition to bone cancer. On the Topamax was a big black box warning to not prescribe this med to anyone with bone disease, and when I called my bone doc/cancer doc to ask, he called me right back, frantic, "No, I do not want you on that med! I know all about it and I do not want you on it."

It verified for me what I knew at the time, when I was talking to her, she was not listening. She had previously done an EMG on me, and also seen me in a "meet and greet appt" so I felt I had enough to go on. I see a lot of doctors. I know the ones who are interested in you and in helping you. She wasn't one of them.

So, there I stood in my CTO and feeling crappy, but had made the mental effort to to get myself UP to try to establish a good connection with this NL!

When the gal at the desk told me it was with Dr. #1, not Dr. #3, I said, "How did that happen?"

She said she didn't know, and she went to find the MA. I waited and when she came back, she said Tracy would be out soon to talk to me.

Frustrated and not afraid tos how it, I asked, "Who is Tracy and why do I need to talk to her?"

"She's the MA who made your appt."

And I said, "I'm not waiting for her. I hurt right now and I'm not up to waiting for her. But you tell her that she SHOULD NEVER DO THIS AGAIN TO ANYONE, ESPECIALLY TO THOSE OF US WHO ARE SICK! "

I walked out feeling confident in leaving. This office is 70 miles round trip for me to reach. And it looks like I'll have to talk to my PCP tomorrow about trying for a different neurologist in a different city, twice as far away.

In spite of this, we had a nice day anyway, together in town. The sun was out, a nice change from the weather the last couple of weeks. We ate lunch at "Skippers."

It seems like nothing about arranging this surgery is easy. I don't know why it has to be so hard.

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