A new label...

I melted down again today.  SIGH.

I thought that by not having counseling this week, by not adding anything "new," I would have a break.  But I did not.

Before my appointment, I opened the mail.  Yes, I was that foolish.  In it was a denial of the hospital's claim.  The pre-authorized pacemaker implantation surgery I had was rejected in whole.  I called the insurance company as I was getting ready and learned, among other  things, that the hospital charges had included Tylenol!  Tylenol is not covered by Medicare.  You have got to be kidding me!  The Medicare company representative actually said that hospitals have to write off things all the time so this will just get written off.

Yes, right.  What are the chances of that??

I asked her how it was fair or even legal to deny paying for the surgery I had in an authorized facility by an authorized surgeon in an authorized room (treatment room as opposed to an operating theatre)? She just sort of laughed and repeated that hospitals have to pay the price when their claims are not right.

It's a game, I thought.  It's all just a bloody game.

How in the world can I expect to have doctors treat me if they are not going to get paid?  This is actually the second claim that was decided.  I learned last week that the surgeon's biopsy from October was not covered.  I've had it done two other times.  It is a covered procedure.  All the company would tell me is that the surgeon's office would just have to try and resubmit the claim.  Personally, I think that part of the going-out-of-business plan of theirs is deny, deny, deny.

Upon my return tonight, I checked my disability payment.  Despite all the effort I made to ensure that the $35 monthly premium to the now defunct Medicare advantage plan company was not deducted from my payment, it was.  No, I do not expect ever to get that money back.  I do want to stop this from happening next month.

I learned that disability payments have three systems involved:  The Social Security Administration, Medicare, and the payment center.  The information was clearly not sent to the payment center even though Medicare and SSA assured me last month that the records showed the change.  The rub?  There is no public phone number for the payment center.  I cannot contact it directly.  There is, in fact, no way for me to stop the automatic deduction.  My SSA caseworker is going to try and get the change made, but she said it could take months.  SIGH.

The toilet/sewer line has never recovered from all the stopped up toilets whilst I had visitors.  So, a sewer company is coming on Friday.  Expensive home repair.  SIGH.

The stove has bad circuits on two of the burners.  I finally tracked down the replacement parts and ordered them.  The electrician is coming to install them on the 20th.  Second expensive home repair.  SIGH.

I need a break.

At my doctor's appointment, which I thought was fairly okay (A1C is lower; cortisol is higher), I tried to be brave to talk about something I have struggled with acutely since the pacemaker surgery.  Something that fells me and shames me.  I spoke because I am supposed to try and do so, a recovery step of sorts.  According the the HIPPA law, anything related to mental health is to be recorded separately and in a private location that is not accessible without special permission.  But when I was handed my visit summary, right at the top was what I had spoken.

It was the first time I saw it in writing.
I melted down.
In fear.
In shame.
In despair.

Having the label of sexual abuse victim (it is IMPOSSIBLE to get that changed to survivor) has significantly reduced the quality of my medical care.  I have numerous instances of where I was charted as "a hysterical female due to a history of sexual abuse" rather than what actually was wrong.  Once, it was an asthma attack that led to pulmonary arrest.  I was resuscitated, but only after a long time of begging for my inhalers which were back in my room (I was en route from an MRI).  My chart did not have asthma, but it did have the hysterical female comment so I was presumed to be lying about the asthma and coughing for attention.  It was absurd.  It was life-threatening.  It was humiliating.

The new label on my chart is not one I can even write.  Is not something I can share, and I was horrified to see it right at the top of my page.

I was weeping and shaking and started struggling to catch my breath.  Given that I have no ability to run, I was also trapped.  The nurse checking me out was concerned and the doctor saw me when I tried to leave ... or rather was leaving and became alarmed.  I know that she was not acting maliciously, but she did break the law ... and she broke my heart.  Broke my hope that things might get better in that regard given how I was treated in the hospital.

I sobbed my way to the car, concerning a whole host of folk I kept asking to stop touching me and to just let me leave.  Only, I couldn't leave for a long while once I was in the car.  The severe cold (made worse by the growing snowstorm) was making my glasses fog up with the heat of my tears.  I couldn't see to drive even if I were capable.

I have been shaking and weeping off and on for hours now, my eyes so painful I want to gouge them out.  I am so very afraid.  And ashamed.

I want to learn about shame, but have never gotten very far.  Through my tears, I watched a talk by a leading researcher on shame and then read an interview.  In the latter, Brené Brown states:  Shame is the intensely painful feeling or experience of believing we are flawed and therefore unworthy of acceptance and belonging.

Dr. Brown teaches that the three things that enable shame to survive are:  secrecy, silence, and judgment.  It's the latter that drives my ridiculous desire for time travel in which I would go back and never admit my past.  Even knowing how destructive that would be, I would remain silent.  For with the revelation of sexual abuse, there is judgment.  So too is judgment over the various and sundry ways folk cope with sexual abuse before they get help (if they ever get help).  As I have noted before, Bass and Davis (in The Courage to Heal) applaud any coping strategy that helps one survive and, without judgment, teach survivors to search and find healthy coping strategies to replace those that are, inherently, unhealthy, such as drugs, alcohol, and self-harm.

There is no way to escape judgement surrounding these things in our world.
For me, there seems no way to escape even my own judgment.

Dr. Brown, in her TED talks, discusses the difference between shame and guilt.  Shame is a focus on self; guilt is a focus on behavior.  Shame is: "I am bad."  Guilt is: "My behavior is bad."  Therefore, there can be positives in growth and change arising from guilt.  Destruction and even death is what stems from shame.

I felt such great fear.
I felt deep shame.
And I felt overwhelming revulsion ... at myself.

With labels that I cannot escape, how is my past (and my present) not my identity?  How do I ever find any worth in my life when I view myself with revulsion and shame?

I cannot take back the words I spoke today.  The words I have been speaking for a while now.  I first dared to tell the surgeon.  Her response was actually what I would dream of ... compassion and a lack of judgment.  She did not add the information to my record.  She did not label me.  She encouraged me to keep fighting it.  Knowing the integrative medicine doctor specializes in treating the whole body, looking at how everything is connected, I thought she should know because I have been ill coping with the challenges of the pacemaker.  I thought it would be ... still secret.  It is not.

Patient is a _________.

There is black and white.
Who I am.
What defines me.

Tonight, I have been thinking a lot about folk who are recovering addicts.  So often they say, "I am an addict."  Are they not, essentially, saying that is how they identify?  What frames them and their life? My counselor tells me that I am not defined by my past, but so very many people, those in authority and those who are medical professionals, do define me as so, filter their responses and treatment through the lens of that identity, even those in authority in the church.  They stop looking for anything wrong with me because this great flaw is already documented and, most of the time, is on full display before them in my unwillingness to be treated by male personnel and my reluctance to be unclothed.  If I were a muslim woman, those two stances of mine would be understood, would hold no judgment, and would not keep me from getting proper care.  They wouldn't be the line at which I stop being someone who is ill and instead be someone who is mentally ill.  Only, and here's the rub, a history of sexual abuse and the weaknesses that creates is actually not mental illness.  SIGH.

I did not think it even possible to be more heartbroken, but I am.
And I am ever so weary of weeping.