Abandoned...like a polar bear on an ice floe

This is me.

I’ve literally been abandoned by my last remaining health care providers.

This is exactly how I feel as another boot strikes the edge of my ice floe. I float out farther into the icy waters, towards a slow and certain demise.

Each of those boots belong to a health care provider – a staff member of a hospital – even a “Patient Advocate” at a world-famous hospital in Boston. Names will follow. I will not go silently into that good night. They will be decloaked. Stay tuned.

Who put me on the floe?  I was forced there by the medical “professionals” that refuse to be proactive. They can’t be bothered to pick up a phone and call a colleague to see if they can help me or even ask, perhaps, if they know someone who might.

They can’t be bothered to do a simple internet search to find out how to treat someone with my rare and complex conditions.

(I’ll even tell them where to look…Medscape, Mayo Clinic, NCBI, Vanderbilt University, Google Scholar.)

It takes seconds.

If I do that, I will be labeled and ostracized (remember the “Seinfeld” episode where that happened to Elaine Bennis?) and my fade-out into black be hastened by their turned backs.

They forget I’m intelligent. They forget I have medical background and medical training and decades of experience advocating for myself and my mother.

[How tragically sad it is when I think about how poorly she was treated. I am being treated just like she was, so she ended her suffering. She too was shoved onto an ice floe. And suffered for 9 years despite of everything i tried to do to help get her some “care.”]

These so-called experts don’t and won’t even pay attention to any of the recent FDA approvals for treatments that could help me.

They won’t pick up the phone and reach out to specialists in the area to dee if they are interested in helping me.

They mindlessly throw out referrals to random places that I have already been (they don’t bother to read my record – to learn about ME), They tell me to “learn to meditate” or “do yoga.”

I have. I did. I am unable to do so.

Then, they insult my counselor. They tell me to talk to her – or that I need to find a new one.

Read my file. (Oh no – that would take time! Doctors are far too important and busy to read a patient’s file. “Only 5 minutes” – “only 2 questions” – “what ONE condition do I want to talk about today?”

Learn about my medical conditions. Read my file. Care about me. Please. Someone just CARE.

Don’t treat me as if don’t matter, as if I am a waste product – isn’t the first line of that all important oath that you take, “First, do no harm?”

Well, your acts and omissions ARE doing harm. Wake up. Pay attention. Realize what you are doing.

Every time your shove me further out into the icy waters, away from you so you won’t have to deal with me, you hurt me. You hurt my husband.  You hurt human beings.

As in the excellent movie, “Gattaca,” I am reduced to the status of being an “in-valid.” One that is not worth the time to help; to waste resources on; to listen to; to treat. A lesser part of society. Disposable.

Shove my floe again. Go ahead. Perhaps you will get lucky and YOU will be the one to cause me to wither and die sooner and the you will not have to be bothered with another patients like me. You can spend your time treating sniffles and GERD and Type 2 Diabetics. Tell them to meditate their problems away and be mindful to help their conditions improve.

But one day, your inattention to patients like me will catch up to you. I promise.

I intend to be on that list of those that YOU ignored and let languish on our ice floes.

Any talents and contributions I had the ability to make to the world will vanish as my floe heads farther out to the horizon – out of sight, out of mind. Good riddance.

I will expose you for your acts and omissions –  that will be my last act. That will be my legacy.

TOO harsh?  Well, that is too bad. This is how I feel.

I have been kicked out of the human race, shoved out into the cold, icy world alone to slowly die. All the boots that have shoved my ice floe farther into the icy waters – my former PCPs, my PCP’s practice, my former orthopaedic surgeon, my anesthesiologist, my former autoimmune doctor, my former cardiologist – all have turned their backs on me and returned to their warm and spacious mansions and forgotten about me. I am just an insignificant blip in the world. After all, there are 7 billion others (and counting – God help us…) Why care about just one?  Especially another one over 50. The world belongs to GenX and the Millenials. Those of us that are Boomers, well, we are just wasting the resources that should be reserved for THEM. the sooner we perish, the better.

I am disposable and useless.

At no time in my life have I felt this hopeless and alone.

I have been forced to return to scouring the web to find any information about my chronic conditions and any doctors that may be interested in seeing a 51 yr old with 4 chronic issues and multiple drug resistance genes. No one is interested. Not a single doctor in the Boston area.

You would think I live in Antarctica. No. I live in Boston. Great medical care?  Cutting edge medical care? Bullshit. Not when I actually have to explain to a physician what an :Autonomic Nervous System dysfunction is, and I watch them blink-blink-blink with wide doe-like eyes during my explanation. Are they even listening to me? Or are they just thinking about buying another Berkin bag or the color of their next Bentley.

Angry, arrogant doctors not interested in listening to a patient with tangible and complex conditions? Yes. Boston is their Mecca.  Don’t believe the hype. Listen to the patients that suffer because of their omissions and arrogance.

I am a compliant patient  – but there reaches a point at which it should be (SHOULD be) apparent these “conservative” (seems to be the latest buzz word) treatments aren’t working. I think 17 years should be good enough. No matter how many times I repeat these “conservative” treatments, costing me thousands of dollars, I get no better. In fact, I often get worse. . But that doesn’t matter. The quicker  I get out of their office – out of their sight – the doctors feel as if they can justify their actions – they have done their job. (Yes, I see you looking at the clock and glancing at your watch every few moments. Thanks for the disrespect. If you would take the time to read my file, I wouldn’t have tor repeat myself very single time I see you. If you would communicate with specialists before you refer me, I wouldn’t be wasting their time, boring them with a life story they don’t want to hear.) HOW RUDE.

Thank you, dear physicians,  for hastening the arrival of another cadaver for the next entitled overachiever to pick apart and insult in their gross anatomy classes. 

 

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Comments
  1. Would it be possible for you to get to Cleveland Clinic in Ohio? We traveled there from Arkansas and met the most wonderful neurologist, Dr. Rebecca Kuenzler. Young and sharp. She tested me for all kinds of things, came up with some possible new answers. That was in 2010 and I had to leave so didn’t get to finish looking at what she found. I have 11 autoimmune diseases including dysautonomia. If there is ANY way for you to see her, please go. The whole hospital/clinic is beyond great. They treat you like you are the only patient they have. Good luck, dear. Nancy Gordon

    • Lori says:

      Hi. Thanks for your comment. I may have to try. I go for more testing next week in Boston. They haven’t been able to figure anything out yet – this will my 4th round of autonomic testing. I do have the “diagnosis” of some type of autoimmune disorder – have had manifestations of whatever it is since I was 12. Evolves as I get older, and with the high incidence of lab errors, docs always ignore the tests that show an issue and focus on the tests that show me as “normal.” My genetics aren’t going to change, nor is my blood type.
      I’m pretty close to giving up and just letting nature take its course.

  2. If you can get away from Harvard Pilgrim, so much the better. I have heard nightmare stories about them. Getting care from HP providers can be extraordinarily difficult. If you can get Blue Cross Blue Shield of Mass., things may improve for you. I have heard stories of “miraculous” turnarounds after years of pain and suffering, once people got away from Tufts, Harvard Pilgrim, or anyone other than BCBSMA. Good luck.

    • Lori says:

      If I ould, I would. It’s my husband’s only choice though. We has BCBS — his employer too it away and left us with HP. I found that it is the system, not the insurer that is problematic. Fir instance, having a Steward PCP is a death sentence – all they are allied to refer to us inferior hospitals and providers. They aren’t even a healthcare company-they are a for-profit venture capital company. I have heard first-hand horror stories directly from docs that are literally held prisoner within their systems-they ties their hands and don’t let them treat patients as individuals.
      I am now affiliated with a BIDMC PCP. He will refer anywhere, they just prefer to keep things in BI, but put the patient care first. I was just given a referral to a BU geneticist – not a single system in Bston has geneticists that work with people like me – with weird conditions and no cancer history. I can’t take MANY meds – the choices are dwindling. We need to know options for drugs not metabolized by the genetically mutated pathways in my body.
      I have learned a lot from healthcare providers since writing my original post. I had a helluva time getting a new PCP. Many refused me. Also,Obamacare has tied the hands of providers in so many ways – if you read the entire act like I did, you would understand why the treatments that were once available to all, are not even allowed anymore. Also, a lot of docs don’t like not knowing the answers to my problems. They simply don’t want patients that they can’t treat easily.
      It is a rare doctor that wants to take on a complex patient like me.

      • Ah, that’s unfortunate. A friend of mine has a daughter who’s a doctor in the Boston area, and they tell me the variations in quality of care are extreme. They recommend that people connect with teaching hospitals because that’s where the most cutting-edge work gets done. Beth Israel. Brigham and Women’s, Mass General, and if you’re farther west, UMass Memorial in Worcester. Not sure where you’re located relative to these, but you may find more help there. Are you on disability/Medicare? I know there are horror stories about it, but my friend (who is over 65 and is on Medicare now) says that part of the money for Medicare goes directly to teaching hospitals to further research, so they are actually more open to recipients than other providers. It’s a rathole, I know, and I don’t know all your details, but I just wanted to share what I’ve learned. Good luck to you & your husband.

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