I Think I’m Maybe 86 Rather Than 46

Standard

Also: 46? Geez, I was getting along just fine with 45 although it was an extended period of adjustment. Let’s slow the roll here, aging.

Ongoing Medical horse-shittery:

The PCP is sending lots of info to the insurance and they are not responding except, I think, that they called me at work yesterday. What’s problematic about that is I work in a very fancy schmancy concrete building and cell phone calls mean I have to shout into the phone “JUST A MINUTE I HAVE TO WALK OUTSIDE” and then run outside to find they have hung up. Also I have a new phone and my voicemail isn’t set up. And it may never be so, that’s one of those chores I loathe.

In the meantime, the PCP and I agreed that he would call the local rheumy and smooth things over so that I could see him as a fall back for when the insurance refuses to let me see the one in Albuquerque. Except, the local rheumy regrets that he cannot help me, so he declined the pleasure of a little catching up. Instead, he and the PCP, after having a mutually supportive hand-wringing session about how hard it is to treat me, decided I should see a Physiatrist. WTF is a Physiatrist, you ask? So did I.

A Physiatrist is sort of the MD who offers everything short of orthopedic surgery. It appears that their understanding of EDS and practices vary wildly, so there’s no telling if this guy can help or not. My PCP called him and they agreed that “EDS cases are difficult” and that the Physiatrist would like to help me with my “misconceptions” about steroid injections. Um. I am well-informed about steroid injections for EDS patients, so maybe I can help him with *his* miconceptions? Except: I don’t really have time to pay you AND educate you about my care. Also, there’s something like a 3 month waiting list to see him. OH, and, he works with the tiny pocket India man that I have already fired as a physical therapist. So, yeah.

At the same time I have ordered the Kevin Muldowney book. The problem being that it is intended for the Physical Therapist, not the patient, and it has to be a PT who is a manual adjustment-focused therapist, not an exercise-focused therapist. The tiny pocket India man is an exercise sort and utterly rigid about his program from the get-go. I mean, he does x, y, z, and isn’t even interested in whether or not you are getting better.

Back-To-Work and Collision of Life Update:

I allude a lot to a problem person in my life, and I’m going to allude again and say this: Walking into my office the first day back at work to find manipulative voicemail messages on my office phone from someone whose last telephone message threatened me should I ever contact them again (even though there had been zero contact from me in over a year) really sucked. I’m not sure why this person didn’t get the message when they spent 15 minutes ringing my doorbell and hammering on the door earlier this summer and I a) didn’t answer the door and b) called the police (who just missed this person, but rumor has it that she knows that’s what I did) but, GO AWAY, PERSON. I am pretty sure I don’t have enough for an order of protection, but, still. I would like one.

Work is hard, already, and my body is not the wondrous instrument I would like. I cannot carry anything on either shoulder, and pushing that weight to my elbows is going to backfire at any moment. My back and hips hurt all the time. When I get home from work, the muscles in my shoulders/upper back seem to sort of crawl up toward my neck and clutch me in a very painful way. I’m chilling on ice (ha ha) and then sleeping on a heating pad to try to settle all that down. The results are minimal.

The emotional soup at work is one of uncertainty, resistance and naked agendas as we have a new department chair who is ready to make lots of changes. Our former interim chair was so bad that we devolved into tiny clusters of people vomiting anger and vitriol in corners, attacking each other and gossiping like a bunch of hens on meth. Uncertainty does not bring out the best in most people, I have found. My goal is to navigate this shit soup like a graceful sailing vessel that moves easily through, and above, the fray.

In Summation:

I have a condition that few people are even willing to understand or support.

Someone needs to stop with their obsessive stalking.

I just need to survive until Thanksgiving, when I’ll have a week off.

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2 responses »

  1. This was a spectacular rant, and well written, considering your life is one big picnic. I understand the frustration of not being supported very well. I know all about hens on meth. I work with some of them. My brain filters them out as background noise. How you manage to stay calm, I can never understand. However, it is important to educate others on your condition, and I believe that you are doing so to the best of your ability. You will get through to someone, I promise. I really hope you can make it to the end of autumn. x

    Like

  2. Thank you sabiscuit. Like many, I do believe the greatest comedy comes from tragedy. I know many people with EDS go through this insane process in the quest for care, so at least I am not carrying the banner alone, and that counts for something.

    Like

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