Thursday, October 25, 2018

No going back...

I was neither triggered nor filled with shame when I left my appointment yesterday.  Nor did I cut.  Christ be praised! 

However.  However, I did learn, the hard way, that Sjögren's is ravaging another part of my body.  My flesh was torn with the sonogram.  And the exam was difficult.  Being single, I do not use my "lady parts," as my doctor said.  And I am middle-aged.  But I have a disease that ravages tissue that has moisture, amongst other things.  It was sobering to learn how severely another part of my body has been affected by Sjögren's.

The appointment, therefore, was truly bittersweet.
Victory mixed with defeat.

Today, though, was mostly more defeat.

I have an appointment for the MRI again.  Not, mind you, that I actually believe it will happen.  Not now.  Not after everything that has happened.

I received a voicemail whilst I was showering after the treadmill torture.  It was from the cardiology nurse who hung up on me, for the second time, a couple of weeks ago whilst I was at my GP appointment.  She said that I needed to check MyChart for information that I needed to agree to as a final element to getting the appointment.  She said to respond either by message or by phone.

I checked MyChart.  There was no message.  So, I called.  And called.  And called.  I did so because I kept getting dumped into voice mail.  When I did reach a nurse, she started to tell me what I needed to know and part of it was that the appointment had been moved back for a second time and was now to be at 9:00.

I just lost it.
Melted down to the nth degree.

All along, no one has consulted me about what I needed or wanted.  I have not been included in the processed of determining my own health care.  In fact, just this very second, it has dawned on me that all the processing has been about covering asses ... Biotronik's and Parkview's (or rather the MRI department).

The missing element was written documentation that I had been appraised of the risks and agreed to them.  I had and have.  But if there wasn't documentation, the MRI department was not going to give me an appointment.

First, my pacemaker was not approved.
Second, a neurologist to sign off on the scan.
Third, a spinal tap.
Fourth, documentation of the cardiologist's approval of the MRI.
Fifth, a peer-to-peer call between cardiology and radiology.
Sixth, my leads were not approved.
Seventh, documentation that I accepted the risks.

Seven objections (that I know of).  Three canceled appointments.  This has been more about saying, "No." than helping me as a patient.

The last thing that that cardiology nurse wrote to me in the messaging system was that she didn't think that I would get an MRI.  I wanted to just scream when I read that.  Scream and weep and wail. Did the cardiologist instruct you to write that?  I cannot see him sabotaging hopes of getting the MRI when he was the one who kept telling me that it was going to happen.  And the messaging system is there to communicate with doctors, not with nurses who hang up on you and are defeatist about your prognosis.

I melted down in such a profound way that I had real tears rolling down my face.  Water welling up from the dessert that is my body.  I ended up bewailing my misery to that nurse, including the hang-ups and the poor communication with nurses through MyChart.

I also melted down when I tried to leave a voice mail for the patient advocate.
I am deeply embarrassed.

It is not that I need to apologize.  At this point, I am not even sure that I want to apologize.  I just want to know if I have jeopardized my status as a patient of the cardiologist.  I did want to say something, but what could I say?

I just felt as if something deep inside broke and there is no going back ... for me.
That damn MRI.

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