Monday, July 30, 2018

Crashed and burned...


I felt like I crashed and burned today in my attempt to advocate for myself, but Becky noted that it was the radiology department personnel who did so.  Feelings can be tricky things ... especially when you inherently believe that you are always the one in the wrong.

I do have a difficult time advocating for myself, even though I rehearsed it with my therapist.  You see, I picked today as the day that I would approach the radiology department about three accommodations that I wanted for the spinal tap that is scheduled two weeks from today:


  • Female staff (if not available then someone to talk with the male radiologist about minimizing how he touches me and definitely no comfort touching, like the arm or shoulder)
  • Surgical underwear for beneath my gown (and really lots of blankets, but I am not sure there will be blankets in there).
  • Becky to accompany me.


I do not believe that any of the three are outlandish or even out-of-the-ordinary requests.  However, I also do not believe that I am worth the time and effort it will take for at least two of them.  And the third is probably against established procedure.  SIGH.

I want Becky there because I know that she will help keep me calm, should the need arise.  I mean, seriously, this is going to hurt.  The lidocaine shots alone hurt.  And I have those pesky nerves that overreact and have disproportionate responses.  I want Becky there because I will be struggling with shame and fear and pain.  I want her there to help me keep from melting down, because folk who melt down in hospital settings often calmed down medically.  I do not want that to happen to me.  Such drugs take me eons to metabolize and leave me tremendously vulnerable.  Plus, if Becky is there, perhaps I can be braver than I normally am, not wanting to embarrass her or unduly distress her.

And I don't want to be alone.

I called and asked to speak with someone about the spinal tap and this woman at the radiology desk said she could help me.  Only once I started talking, she was not interested in helping me.  She was busy.  She didn't know the schedule.  She asked me to call back next week or so.  Well, no, that would not be a good idea since I know that it will take time to check staff schedules and, perhaps, change my appointment, to fit the lone female radiologist on staff.  She finally just asked for my number and said that she'd call me right back.

She didn't.
I knew she wouldn't.

After thinking on the matter for a very long time (and posting on Facebook), I decided to try the patient advocate route.  At first, the woman who called me back from that department was suggesting that I simply have the ordering physician ask for the accommodations.  But that did not work so well for me with the colonoscopy.  Plus, the neurologist is outside of the Parkview system and it has taken her nurse more than a week at a time to get back with me on the two questions I have already posed.  I feel the direct route with the department is best.  I mentioned the lack of follow-through with the colonoscopy staff and how I wanted to try to avoid that scenario repeating itself by talking with the staff in advance.  Then, the woman sort of changed her tune and said she would start by talking with the head of the radiology department to see what could be done and how to go about it.  She started to say she would give me an update in the morning, but I told her that I understood that these things would take time and that I wasn't expecting a speedy response or was in need of regular updates to feel as if something was being done.  So, she then said she'd probably be able to get back with me with a plan in a few days.

You know how I like a plan.

For me, asking for female staff brings shame.  But I also struggle with deep shame over my response to male staff.  Shame and fear and flashbacks.  The same is true when I cannot wear anything beneath a hospital gown.  Underwear is safety to me, albeit a tenuous one.  I have a greater capacity to be ... normal ... when I have underwear on.  But I don't like being the person for whom this is true.  I don't like needing such things.

Because I don't like the response I normally get to such requests.

Being a bother.
Needing to get over things.
Being a head-case.
Being weak.
Being mentally ill.
Being troublesome.

Neither a history of sexual abuse nor PTSD is mental illness.  Folk seem to forget that.  But neither is something that you just "get over."  Would that they were.  SIGH.

With the woman in the radiology department and the patient advocate, I emphasized the PTSD and never once mentioned a history fo sexual abuse.  I focused on trying to eliminate triggers.  I thought that this might keep things ... well ... not mired in the idea that I am mentally ill or the sexual abuse.  I suppose I'll learn in two weeks whether or not the emphasis helped or hurt.

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