Just Because You Are Paranoid…

Does not mean that they are not out to get you.

One of the many pieces of paper I have received since engaging with the medical bureaucracy assured me that they would not retaliate against me if I disagreed with their decisions or actions.  Now the only reason that I can think of for a bureaucratic entity to inform their clientele in writing that they will not retaliate is that the resolution of some legal conflict included informing future clients that the company has a history of retaliation. Unfortunately, the context in which I received this notification included my discovering that:

  • despite the fact that I have tracked my thyroid function for forty-five years, which included regularly testing my blood glucose levels without any indication of any abnormality with my blood sugar ever ,
  • that I have no family history of diabetes, and
  • that no doctor has ever even mentioned the word diabetes to me

I have been categorized as a diabetic.

The only faint indication I have ever had that there might be something resembling  even a  remote possibility of that distant relative of diabetes, fatty liver disease, was a casual statement  on my first liver ultrasound that speculated that  that the, to them, inexplicably  ‘gravelly’ texture of my liver might possibly be due to fatty liver disease. Despite numerous requests to have my liver function     tested, it took almost a year and four different primary care physicians to find one who would run a metabolic panel that would rule out that out.

The tests, of course, came back normal, because what I actually have is a textbook case of traumatic biliary cirrhosis (TBC).  Besides the original trauma as a toddler, the lightning strike ran a billion volts through my body for 5-10 seconds before I fell over. The reason my liver looked like scrambled eggs in the ultrasound was for the same reason scrambled eggs look like scrambled eggs:

  • As both eggs and liver are mostly lecithin and albumin, when they are heated up and shaken around, they turn into lumps of semi-coagulated fats and proteins

Which might make for a great breakfast but seriously hampers liver function. I, of course, have disputed being misdiagnosed as a diabetic.  However, TBC is not a remunerative diagnosis. Diabetes, on the other hand, is big business and HMO’s get big bucks long term for managing diabetics. That patient welfare means nothing compared to corporate welfare was made all too clear when I wrote to my insurance company telling them that I was concerned about the quality of health care I was receiving:

  • My patient care coordinator informed me that there was nothing she could do to help me
  • My medical records suddenly became politely inaccessible

I ended up asking a friend to help me as I was getting far too frustrated and all told it took 3 months, 2 requests from the state agency, my signing 3 different versions of the same  release form, and countless phone calls to numbers that had nothing to do with medical records, some of which were not even part of the correct corporation. My favorite response was ‘Why are you calling me about this?’ as that was what I myself would like to know.

As an added twist, the brand new building that the medical group’s office built is environmentally toxic. My reactions when I enter the building run the gamut from rashes to full on allergic shock. When I decided to give up on my patient care coordinator, I ask the main office telephone operators from the company what they had to offer for a patient with severe environmental sensitivities. She said she did not understand what I meant.  Therefore, I repeated the statement in words of one or two syllables:

  • Your building makes me sick. I cannot go inside it. What other choices do I have?

When I refused to take ‘I don’t understand plain English‘ as an answer she referred me back to the same patient care coordinator who had originally told me they could not help me. I decided that I had had more than enough problems with these people. I thought that perhaps a primary care physician who contracts with the company, but is not a direct employee would be more helpful. Turns out that the first appointment I could make is January 25, 2017, nearly five months from the date I called. Patient care is not a priority, but apparently the bureaucracy can move quickly when it wants to as only a few days after I made the appointment:

  • I got a piece of paper informing me I no longer qualified for care level 2  (whatever that means) or
  • for having a patient care coordinator, and
  • I was reported to Adult Protective Services for ‘self-endangerment’

Now the only people in my circle of activity that even know that Adult Protective Services exists, never mind know who to contact and how to file such a report is the very same company that pays my patient care coordinator. Apparently insisting that my actual health issues be recognized and refusing unnecessary operations and medications while avoiding environmentally and emotionally toxic environments is seriously dangerous to my well-being. So far, I have refused:

  • A completely uncalled for gall bladder surgery that the next doctor actually called ‘crazy’
  • Prescriptions for statins, which are both unnecessary AND counter-indicated for someone with myofascial pain syndrome as they raise levels of CPK, which is associated with muscle damage
  • Prescriptions for Gabapenten and Cymbalta prescribed without an exam and according to Google, primarily used for peripheral neuropathy found in late-stage diabetics
  • To stay in buildings and/or around people who are out-gassing such relentless and large amounts of toxic fumes that they make me seriously sick
  • To return to offices whose staff are verbally and physically abusive

 Meantime, I’d still like to get a CT scan and see what is happening inside my skull as oozing enough bloody serum to leak out my tear ducts and fill my mouth if I bend over perturbs me just a wee bit more than is comfortable. The reality of the situation is that I have been unable to get in to see a primary physician willing to order even the low cost blood tests that would help me to manage my health issues and perhaps get me an accurate and useful diagnosis.

  • CBC and WBC to track the possibility of dehydration, anemia, and/or low-grade infections
  • Bilirubin, Alkaline phosphatase, and liver enzymes which might show that I do actually have TBC and could help me manage my environmental sensitivities
  • Blood sugar-which would rule out diabetes
  • TSH, T4, and T3 which would help me track my ability to metabolize the thyroid I take
  • DHEA and/or cortisol which would give me an idea of how stressed my adrenals are
  • B-12 and B-12 and D which I have problems absorbing
  • CPK which would help me track how well low-dose-naltrexone is handling my myofascial pain syndrome and my level of activity

The latest episode in the bureaucratic tangle was a brief appointment with an independently contracted psychologist to assess my mental status. Now, how someone is supposed to do an accurate assessment in 30 minutes is beyond me, but I decided to see what this encounter would entail anyway.

  • Insisting that I tell my life history without mentioning my medical issues was an exercise in frustration. I finally told him that what he was asking for was impossible because every major life decision I have made has been predicated on my physical limitations.
  • Taking a deep breath in order to calm myself set off another batch of adhesions around my heart, diaphragm, and liver ripping and another batch of intrahepatic stones moving. I was impressed that I was able to track the conversation and respond coherently even if I was weeping with pain.
  • He told me I was hysterical and needed to learn pain management techniques. Thankfully that was at the end of the session so I could leave without daring him to sit up and make sense while passing even a single gallstone
  • I did tell him that he epitomized the dilemma I face with the medical industry as if I do manage my pain I get told that it is obvious I have no physical problems, but if I show any sign of how bad I actually feel, I get called hysterical.
  • We did agree that I was suffering serious stress from my circumstances. We just did not come to any agreement on what those circumstances actually were.
  • But the kicker was his telling me that by putting my symptoms and experiences in writing I was pitting the bureaucracy against itself and that either I was insinuating that there was widespread malpractice and insurance fraud or I was delusional  since my record illustrates just how thoroughly and obviously I am incapable of working the system well enough to defraud it myself

My intention has been to get the information I need to manage my health issues, but apparently, what it takes to get that done is taking on the quixotic battle against the modern mainstream medical industry.  For myself, I am not sure that that is a wise or constructive path to take. Managing chronic health issues through mainstream medicine is a laughable prospect and I have managed to wrest enough information out of the system to assure myself that I do not have either MS or cancer. All the same, I have been put in a lose/lose situation:

  • If I do nothing at all, I will be misdiagnosed and mistreated
  • If I speak up, I will be mistreated and misdiagnosed

When I told the staff psychologist at one office that there was no other circumstance on the planet where I would voluntarily shut myself up in a small room with a stranger and let them insult and abuse me, she informed me that the medical industry was a hierarchy with the patient at the bottom and I should just get used to it.  Apparently, she was simply being realistic because I received a phone call from one of the (unidentified) staff at the next office I visited who informed me that:

  • My real and only health problem was that I was taking ‘too much’ thyroid despite the fact that my blood tests showed my thyroid levels were low normal

When I told the woman that I had an appointment with my endocrinologist to discuss my post-thyroid nodule surgery thyroid prescription, she basically called me a liar, and informed me that she would have to check for herself.  Now, I tend to side with Mark Twain who claimed he told the truth because he did not have a good enough memory to keep track of any lies he might tell. I have way too much that is actually going wrong with my body to bother making anything up. Even more insulting was her intimation that I was stupid enough to lie about something as easily checked as a doctor’s appointment that the very same corporation where she worked was paying for.

For the most part malpractice suits require that you let the doctors cripple or kill you before the lawyers can take action.   On the other hand, iatrogenic or doctor caused illnesses are one of the top three causes of death in this country and it seems there is good reason for that. I am reasonably well spoken, well informed, and willing and able to defend myself (except when unconscious on the operating table, but that is another blog). If I were on line enough to track the results, I would poll you, my readers, for your take on the situation:

  • Should I confine myself to blogging about my surreal experiences in the dangerously dysfunctional mainstream medical industry?
  • Should I pursue some sort of legal action against it?
  • Should I shut up, sit back, and cover my own ass as best I can?
  • Are there enough people out there concerned enough about the healthcare situation to demand change?

2 thoughts on “Just Because You Are Paranoid…

  1. Sara – wow…
    Talking (blogging) about it at least helps to inform others, and is possibly some amount of unburdening for you. As for legal action, unless you know someone that you trust to help you that’s going to get VERY involved and unfortunately may spend more energy than you have right now. Never shut up when you are being wronged. I don’t know about “enough people”. I for one stay out of the bureaucracy myself, however my mother must be in it to some extent so I deal with it for her sake (and can certainly relate to a small part of what you have experienced).. My thoughts and prayers are with you, never give up.

    • Thanks Sarah! I have taken a respite from the medical industry and do feel better for it. On the other hand, I have talked with people dealing with the same bureaucracy who are being now treated better than I was… I am not sure how direct an effect I have had , but it is looking like speaking out is making it a little easier for others to get their needs met.

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