Medical Summer


Summer is time I use to rest up from the academic year, engage projects that advance my skills and take care of any medical issues I put off during the school year. My expectation is that I exit Summer with completed projects, better health and an improved outlook. Summer ends for me in less than two weeks, and it has not been the sort of break I needed or wanted.

As extensively detailed here, there was the whole Xanax disaster, with the smaller disasters of Cymbalta and Ambien. There was the return to Physical Therapy to address the bulging disc at L5 in my lower back. There was the consideration and then rejection of the Medical Marijuana option. There was the unavailability of my rheumatologist and my subsequent decision to (mostly) fire him.

Last week, my PT did something that really affected my left hip badly. I could barely walk the next day, and finally after both my mother and my husband advocated that I do so, I called her. She had me come in, but then she started speaking uncertainly, saying how if she tried “A” it made me worse, but “B” seemed to make me worse, and, well, she just didn’t know…..

“Are you firing me?” I asked, “Because it sounds like you are firing me.”

Oh, uh, no, she said, “But, maybe you should fire ME, I mean, if it’s not helping.” Then she went on to detail all the options there aren’t for me. When was I to see my doctor? I don’t have a doctor, I have a harried, overwhelmed Nurse Practitioner and I don’t currently have an appointment. What about the Rheumatologist? Refused to see me until September, so: fired. What about steroid shots? Inadvisable for people with EDS as they are damaging to collagen and ours is already damaged/defective. Surgery is definitely not an option. Correct. Can’t imagine much beyond just splinting you, but I know you don’t want that. Is there someone who *does* want that? At what point was this about what I WANT? Also, my skin does not always tolerate splints, either. 

I left feeling really demoralized. We reconvened the following week and I pointed out to her that if she fired me, it would be closing another door, and there aren’t currently any more doors. I would have no team at that point. If that’s the reality, then I would have to accept that, but I wasn’t pleased about it. She decided that there might be some other things she can do for me and she also decided that maybe there really *is* something wrong with my hip (something she’s denied until now, figuring it was referred pain from my back).  So today I had an xray of my hips, which we have to do before the insurance will give us the blessing for an MRI, which is what we know we will need.

IF, however, it is what I think it is (torn labrum), we can refer back to the options there aren’t. Surgery isn’t an option. We can’t go too far with PT. I’m easily injured and slow to recover. Square one, the only spot there is.

At this point, then, I am worse off than I was in May. I am not taking any prescription medication. I have nothing for pain, nothing for sleep. My hip is worse than it was, my back is worse than it was. My “team” has gone from PCP, Rheumatologist, Psychologist and PT to a PCP out of ideas, a PT out of ideas and no Rheumatologist.  The Shrink is pretty much the whole team right now. I currently can’t sit comfortably for more than 15 minutes, I can’t walk very far without pain, I wake up at night due to pain from my hip or my shoulders or my back, and I’m about to go back to a very demanding  job.

I’m torn between going ahead and firing the PT, and then just flying blind until something unmanageable happens or sticking with it awhile longer even though I suspect it’s pointless and I’m just afraid to be alone with my reality. This is where I always find myself stuck, and it’s seemingly never ending. I am afraid work will be too hard for me, afraid I’ve lost too much ground, afraid it will not ever get better.

That’s not the place I wanted my break to end, yet in less than two weeks classes start again and we’re off and, well, not running. Off and limping.


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