Posts Tagged ‘apathy’

The sun going down on me. Photo by Lori Schneider.

The sun going down on me… Photo by Lori Schneider.

 

 

 

 

 

 

 

 

 

 

 

 

 

The myriad of health issues I have are now battling for center stage with my failing relationship with my only real-life friend, my husband. OR it is most definitely contributing directly to it.

[But that is another topic in and of itself  – one that doesn’t belong in this blog. It just would be REALLY great of my husband, and alleged best friend would understand these things, and want to work on our relationship. But his lackluster responses to my pleas for us to work on this don’t give me much hope, nor reason to be. At times he acts as if nothing is wrong – yet I know deep down that he knows what our relationship has become, aided by my mysterious health issues and consistent issues finding medical care, is not much more than coexistence. BUT – what do you do when your partner in life doesn’t make the effort to try to improve your relationship? Ouch.]

These health issues stole my career paths and any options I had within my fields of expertise. I tried for years to do something from home – to use my  skills and experience to help others – for free.. But, no one wanted my help  – this devalued what I had made of myself, who I was, what I had accomplished, and what I thought I could do that would be meaningful.

Every day, I never know what symptom or issues will pay me a visit and hang out to make me question the validity of my existence.

Ahhh, and how these things – I mean things that used to annoy me, or cause me psychic discomfort – have changed me. I have lost myself. My raison d’être, my sunshine, is disappearing. The sun is going down – on my life.

For 40 years, things that got in my way were motivating to me. They made me fight, they made me strong,

Now, these things paralyze me.

Literally.

I often will just plop down on the floor where ever I am when these feelings hit me, and just stare at a fixed point.  (It is a grounding technique – in more than one way. Ha Ha.)

No longer can I throw myself into a project, a creative endeavor, a research topic. I find that these distraction techniques/coping mechanisms just increase my physical symptoms. And of course, these involuntary reactions just increase my doubts about my ability to survive this predicament.

What I need now is the me from 5 years ago – before I lost my self to this hell. But alas, she is gone. Yup – thrown in the thrash, compacted and burned. A deep “thanks” to all of you – you know who your are – all of you so-called patient advocacy groups that made promises that I could write for your website/journal, all of those false friends that hurled criticisms at me, and all of you “health care providers” that violated that basics of that all important Hippocratic Oath by failing to treat me as a human being – you all helped do this to me.

One person can only fight for so long – alone – before all these things take their toll.

“He who has a why can hear with almost any how.”
so goes the famous Nietzsche quote.

I have lost my WHY.

And that makes it hard to find that HOW.

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. 

 

I am a complex patient. I have lots of physical issues. I do not enjoy any part of my intricacies. It makes doctors dread seeing my name on their schedule.
Since I was 6 years old, it was clear that the illnesses I experienced frequently were not typical. I intuitively knew that doctors didn’t like to deal with me because I wasn’t a simple textbook case of anything. At age 12, I was diagnosed with ulcers. I sustained myself on instant mashed potatoes and plain macaroni with butter. Around the same time, a friend of my Mom’s noticed these odd rashes I would get on my face, and how my joints would sometimes be swollen, causing me to walk “gingerly.” A friend of mine from school had diffuse leg pains one day and left school early. It sounded like the kind of pain that my mom always referred to as “growing pains.” My friend returned to school back a month later with a diagnoses of Legg-Perthes.
Why was it that this pretty little girl who only had a few sick days from school, is now suddenly treated as though she is a princess? She got special hours at school – when she went to school. People donated crutches to her so she could get around when her legs hurt.
I was jealous. I had lots of pains too! I was often out sick because I was unable to breathe properly. It was unfair – I had suffered since I was age 5 with all sorts of strange and unexplainable illnesses. No one gave me days off of school. No doctors were going out of their way, running tests, taking x-rays, trying to find out what was wrong with me. It isn’t hard, even as a preteen, to notice that for some reason, my physical problems were just not that important to the doctors. They were not very nice to me when I saw them. Once a doctor told me I probably had cancer…then turned to my mom and laughed.
By the time I was 16, I had amassed a myriad of odd complaints. I was always given the same prescriptions: Afrin, antibiotics, and cases (24 bottles at a time) of Mylanta. I was in college at 16, And since I wasn’t old enough to hang out and drink yet (in the olden days, drinking age was 18), I immersed myself in books, spending all of my time in the medical periodicals and textbooks trying to figure out what was wrong with me. This research paid off when, at age 17, I became engaged. I went to my doc for the mandatory premarital RPR blood test (for syphilis).I was called back in to the doctors office for the results a few days later. Odd, since they gave my soon-to-be-husband his results over the phone. I sat in a room for several hours. No one would see me. Finally, a doctor came in I had never met before and explained what the problem was – my RPR was positive. This meant I had syphilis…UNLESS, he explained, I had something called an “autoimmune disorder.” I lit up, and excitedly related all of my “odd” symptoms no doctor ever cared about before: unilateral joint swelling; facial flushing on one side, not the other; a butterfly-shaped rash on my nose and cheeks, cyclical bouts of stomach distress and nausea…all symptoms I had read about in the medical texts about something called “lupus.” My second RPR thankfully came back as a “biological false positive,” which, at that point in history, was part of the diagnostic criteria for these autoimmune disorders. This doctor changed me – he listened to me, he believed me, he took knowledge I had found through my research, and showed me how it applied to my condition. This experience taught me that if I was to get ANY attention from doctors for my symptoms, I would have to do my own research, and bring this information to doctors so they could then test me for these conditions. And then, I may get the help I need!
Annnnnd, the rest, as they say, is history. I learned how to research medical journals at the local hospital library-it was free! (Keep in mind, this was way, way before the internet, back in the late 70’s and early 80’s.) My interest in medical stuff led me to become a volunteer EMT with IV, defib and trauma certifications. I taught CPR classes to doctors (prerequisite to their required Advanced Cardiac Life Support classes). I taught legal aspects of emergency medicine as part of EMT certification classes. I really should have tried to go to medical school…
Over the years, my self-acquired research skills helped me to get standard-of-care treatment for a large ovarian cyst, when I was only being offered sub-par treatment by the military (I was a military wife); I was able to obtain tests that confirmed I had several autoimmune and blood-clotting abnormalities, even after a “specialist” had labeled me as “just seeking attention;” I successfully and naturally treated my Raynaud’s Syndrome back in the 1980’s with supplements just now getting a plethora of media attention from Dr. Oz and his colleagues (enough to shock my rheumatologist into documenting my successes with his peers); I educated my ophthalmologist about why my vision was consistently changing (a multitude of autoimmune conditions effect the eye – however, the lens of the eye is made of tissue similar to the tissues that swell in joints, therefore, visual disturbance often correlates with cyclical joint swelling.)
I don’t wish to bore you with all of my research endeavors, but I am quite proud of two of my recent successes – the discovery of the cause of a major and painful change in my, ummm, boobs ( I call it my “Dolly Parton Syndrome”). Six doctors didn’t know why, and five of the six literally gave up and offered me no further testing, hope or inquiry. I uncovered the direct cause through a basic Google search. Within 15 minutes, I had several PubMed articles that provided a detailed description of the biological cascade causing my DPS.
In 2004, I found the research of a most intuitive neurosurgeon, Dr. Aaron Filler, whose reseach and developments in peripheral nerve imaging was astonishing – the type of “back and leg” symptoms I had been experiencing since 1997 were Dr. Filler’s speciality. I literally read every one of his research papers over the next few years. In 2009, I underwent one of his neuro imaging studies – the MRN. The results of this study made me so happy – the increasing pain I was experiencing had a visible cause. I wasn’t making it up. It was real. Not only did I have 2 genetic anomalies, but I had atrophied musculature, and four nerves adhered to each other. The sheer elation of being vindicated, even though I had a major physical issue, was an almost unbelievable victory for me. The thousands of dollars spent on many specialty physicians (orthopedic surgeons, physiatrists, neurosurgeons, interventional radiologists, low back pain “specialists” – many of whom were neither helpful nor kind – and the years of pain, the loss of my career…how much better could my life have been had just ONE of these doctors spent some time perusing some online CME activities, or read a peer-reviewed journal in their area of expertise, or did a PubMed search for the constellation of symptoms a young woman in obvious distress presented in their office one day…that is exactly how I found Dr. Filler. And, several others with symptoms like mine have found him incredibly helpful as well. He has made a difference in many lives world-wide.
Why DO I write about my health issues? I want other people to learn the cause of and solutions to their pain and health problems. I want their doctors to be a source of trust, hope and comfort, not the originator of humiliating comments, such as “what you claim to have can be managed with 800mg of ibuprofen,” or being called “immature and emotional” during a procedure involving multiple spinal injections – without the humane administration of mild sedation (protocol at most pain management centers). A patient shouldn’t be paying a physician to be the herald of public accusations of doctor-shopping “to obtain drugs to sell to your friends;” or the author of comments in their medical records accusing them of “attention-seeking.”
I write to educate people to advocate for themselves. If they don’t, no one else is likely to step up and do it for them. I use my real-world experiences to illustrate what is going on in Western medicine. Everything I relate about my experiences with medical professionals is FACT. It has happened to me. It shouldn’t be happening to me – or to anyone else.

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