Thursday, October 4, 2012

Trusting in the system

Author in 2009 bellydancing. Photo is black & white, with short hair, black long sleeved crop top, tiger print hip shawl, and black flared pants with tattoo showing on pale skin, performing a standing layback.
Pic taken in 2009 by Dave Stagner
A "comrade in spine crap" of mine started going to the same orthopedic clinic that I've been going to for pain management.  I've had a pretty decent relationship with my nurse practitioner there, so he started seeing her as well.  I saw her in the beginning of August, and he saw her towards the end of the month.  He found out that she was leaving at the end of the month, and I think my jaw hit the floor.

I felt like I'd hit the jackpot with this person.  I was able to be frank with her about symptoms and pain, to express my Health At Every Size standpoint, to let her know that I was a bit of a medical geek and had done a lot of research about my various spinal conditions as well as my birth defect-related minefield.  When I was trying to figure out if I should pursue spinal fusion, she gave me some markers of impairment that she thought were appropriate signals to revisit surgery.

So I found out from my friend that my NP left at the end of August, and that she didn't tell me at the appointment.  My first feeling was betrayal, then mourning, then panic.  I take narcotic pain medications and muscle relaxers daily (up to four times a day depending on the medication & how much pain I'm able to tolerate).  She understood that I usually refused to medicate my pain enough because of the side effect problems (want to try to do deep sociological analytic work while on narcotics?  For me, it's extremely difficult).  She also didn't treat me poorly because of my deep understanding of my various medical conditions.

You see, when your physiology is complex enough that general practitioners won't see you ( university's student health center has told me this recently, which makes life more difficult because my insurance requires me to use them for "general health" needs), there can be this tendency to latch on to any professional that doesn't treat you like a freak of nature.  I latched on to her fiercely.

Now?  I'm feeling lost.

I wouldn't even be seeing her for another month or two because of my prescription refills and our mutual understanding that I might just get slowly worse.  We both knew that I'm losing function and feeling.  We both knew that there was no literature about spinal fusion success in people with pituitary abnormalities, and that I wasn't willing to be a case study (well, if someone would put me as second author maybe...just kidding).  She was forthright but gentle, and had one of those faces that always seemed to tell me that life sometimes sucks but it's worth the fight.

She never told me to quit school.  She never told me to quit my job.  She told me to keep being as active as I could.  She affirmed my athletic identity.  She did tell me to quit powerlifting (I didn't initially listen...I'm stubborn when it comes to something I love).

Now I have to either trust whoever takes over her position or find a new clinic.  I have to trust that, whichever option I chose, the provider will treat me with respect, will respect my knowledge of my physiology, and that will understand that my pleasant face is many times just a mask hiding pain and uncertainty.  I have to hope that I won't be shamed for my fat and that my broken spine won't be pinned on my size.  I have to hope that the person knows that sometimes my medication noncompliance is due to my scholarly work that I refuse to give up even though it becomes more difficult, both because I'm a doctoral student instead of a masters student and because the pain seems harder & harder to manage.

I have to trust in the American medical system to help make it ok, and I'm petrified.

No comments:

Post a Comment