I finally heard back on all four referrals I was waiting on for new doctors, and the next couple weeks I’ll be getting set up with all of them. I actually already saw the new Neurologist yesterday. He was the only one I hadn’t heard back from in the expected time frame, and when I called my referring physician’s nurse to inquire, those two doctors just so happened to be on the phone with each other at the exact same time. I was instructed to call the Neuro’s nurse directly because he wanted to get me in there immediately instead of waiting until his first available new patient slot in October. That right there was impressive. I felt valued and special. True, it was a bit scary because it hinted at a confirmation of my suspicions, but it meant he knew enough to know how serious things are. It meant he was probably going to be different from all the assholes I’d endured thus far.

So, with an 8:30 appointment time, I arrived at 8:15 to what I thought to be a locked door. At 8:30 when I still hadn’t seen anyone come open the front door, I walked up and pulled on it to get someone’s attention. I was then ushered into an adjacent waiting room. Apparently, the people I’d seen enter through the neighboring door I believed to be a different office were in fact going to where I needed to be. Not off to a great start. I was supposed to be there before regular hours so that I’d be his very first patient of the day after returning from a conference, and the place was busy already. They finally call me back, I spend close to two hours with one nurse just getting all my information into the system and getting vitals. Then it was to the lab for blood draws, and a thwarted attempt to make me pee in a cup – this is a neurology and pain management office, and since I was there only for neurology and not wanting any sort of pain medication, there was no reason to make me prove what chemicals were in my body and charge me for it.

Finally, somewhere around 11:15, I get to sit down with the doctor. We started off with a bit of friction, but only because he assumed a couple things about me, and it just rubs me the wrong way any time someone makes an assumption of any kind about me instead of asking questions to see what I do know or have or whatever. In all fairness, his assumptions made sense because it was all essentially that I was not addressing spiritual influences on my physical state. That’s right, he understands and incorporates spiritual healing as well as the standard physical and mental aspects of dysfunction into his treatments. Most doctors don’t do that, and most patients think their medical issues are purely physical, so I’m sure he was sort of in robot mode, running through his “Welcome New Patient” program. Of course, I corrected his assumptions along with the contributions from the Nurse Practitioner who was there with us. I have no more tolerance for incorrect assumptions or for being told how to do something I know how to do or that I need to do something I’m already doing.

I’ve had this dialogue in my head for years where some authority is trying to tell me who I am, what I need, what my problems are and how to fix them, and other versions of “I don’t even have to work to figure you out. I know exactly what you’re all about because I’m better than you in some way”. My mother told a nurse once in an argument, right in front of me in the hospital as I was recovering from surgery, that she knew me better than I knew myself, and my ex-husband used to tell me he knew me better than I knew myself all the time. They were both very wrong, and most doctors have been completely wrong about my diagnoses. I almost died a year ago because of some arrogant fuck making incorrect assumptions, and I vowed then that I would not tolerate any more. It is actually a struggle now for me to not snap back with “You don’t know me!” and a detailed list of all the errors they’ve made. Now that I’m getting my chemistry back to a healthier level, having learned more about my MTHFR mutations and gotten all the bad medications out of my system, it’s much easier to reign it in and keep it polite and assertive instead of some hostile “go fuck yourself” type response. (Read a bit about MTHFR, and that’ll make a lot more sense if it doesn’t make much sense to you now. I’m hoping the Geneticist can help me get a better handle on all of it, and I’ll post more about it after that.) And guess what! He actually apologized for offending me as I was leaving. That’s a first. I’ve never gotten an apology from a doctor. Of all the disrespectful scenarios where an apology was warranted, I never once got one, and this time, really, his assumptions weren’t exactly unjustified based on the fact that most people really are not awakened enough to understand the spiritual basis for some of our medical issues.

Aside from all that, he is familiar with all my diagnosed or suspected conditions: EDS, syringeomyelia, Chiari malformation, craniocervical instability, dysautonomia, and MTHFR mutations. Finally, a doctor I don’t have to worry about educating. He didn’t have to ask me what anything was, which was a surprise and a comfort. He’s the first doctor to neither write me off as crazy nor ask me to tell him what something means. I wish I could express the kind of relief that inspires in me. I’m trying not to get my hopes up because I just don’t know that I’d have the strength to keep trying if he turns out to be a disappointment, but I can feel myself in a place where it might be ok to let my guard down and let some of that hope in. It’s like I haven’t seen the light at the end of the tunnel yet, but the voice that keeps telling me there is one is sounding more and more real.

Coincidentally, he’s a Captain in the Reserves, in charge of the physicians in service for our entire state. He and the Lieutenant Colonel Physiatrist (his commanding officer) who referred me to him both  fulfill their military duties at the armory my husband does. When I add that to the timing of everything and how I made it into this doctor’s office, there’s such a serendipitous air about yesterday’s appointment that has me looking up. I finally feel like progress is being made. I’m being heard. I’m being helped. Things are moving forward.

P.S. – I also had my first normal poop in I don’t even remember how long! Getting it to leave my body was still painful and not as easy as it should’ve been, but the doody itself was actually a textbook, perfectly healthy looking sample. It was a short-lived triumph, but for the issues I have with this fucking gut, a moment like that will boost my spirits for a few days. It was almost as invigorating as the day I was finally able to drive myself again after over a month of being barely able to walk around, feed, and clean myself.

Advertisements