Posts Tagged ‘Autonomic nervous system’

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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Here’s some info- albeit not empirical – a good posting that describes a DYSAUTONOMIC’s experience (not just POTs patients). This was posted on another bloggers blog and I’m re-posting here. ..and, oddly, contains passages that I, (myself..me) had written in response to a posting on someone else’s blog months ago.
So I learned a lesson…always make sure you post your musings on your own blog to preserve ownership.
Regarding this “article” – It describes FAR more than POTS-which, is but a small percentage of those that have the symptoms described in this re-posting and apply to most folks with dysautonomia. (Disagree? I’ll let my dysautonomic specialists know.)
I often ponder why it is that most POTS folks seem to claim ownership of the dysautonomia diagnosis ….it’s as if the rest of us that have another, and often untreatable, form of the disorder just don’t matter at all….
A note to those that fit into this category (the non-POTS group) – you are not fighting this invisible illness alone. Medscape has a fantastic educational page on Autonomic Disorders in their education/diagnostic section. We do exist.

A letter to my illness…which one?

Dear Body,

What the hell is going on?
You got me through childhood fairly unscathed, but then, you start messing with me. Yea, yea, we’ve heard it over and over – “You’re a survivor – look at all you’ve had to deal with.” Then there’s the trauma theories – it actually changes the structure of the brain; trauma is stored in the body.

Wait – is THAT it?

I get the ulcers at age 12. Makes sense. The migraines at age 14 – got it. The autoimmune stuff – as I always said to myself – it IS the ultimate form of self-hatred – the body against itself. But, what is with the weirdness of late? Why is everything you throw at me have to be something that doctors can’t figure out? All you do is pile on the stuff and that just adds insult to injury? The struggle is OVER. No one paid attention back then, and it’s too late now for retribution or revenge or redemption.

Honestly, this dysautonomia is the last straw. I can’t take it anymore. My husband can’t handle the issues either. You’ve driven other people away, do you really have to try to destroy this relationship as well? Does 14 yrs of sexual abuse lead to an autonomic nervous system disorder that waits 35 years to reveal itself? If so, why? And why NOW? Isn’t the genetic anomaly stuff, the brutal sleep disorder that makes everything else much worse, the pituitary tumor , the bone spurs, the resorption of my teeth, the whacked out way my breast size keeps painfully increasing and my hair falling out – you know the list –  why do you hand me problems that require me to do all this research – and then I must haggle with my doctors just to figure out what is going on? Honestly, it feels as if YOU are torturing me all over again.

We are on the same team, in case you haven’t noticed.

I’ve done time in this bizarre prison camp for crimes I didn’t commit – what more do you want? Because I have nothing left to give.

WEGO Health