Archive for the ‘finding doctors’ Category

REMEMBER THIS:

Don'tUnderestimateMe

Radical acceptance isn’t supposed to be bitter. It is supposed to bring peace.

So, I will now continue along my path, knowing, thinking, and noticing.

I don’t know what else to call this set of emotions that have lead me to say, “I’m done.”

I am just frustrated beyond words over  being marginalized by my healthcare providers, and really, just people in general.

I’m tired of the fight getting me nowhere.

I recently read something by Australian historian and author. Tim Flannery (The Eternal Frontier) that made me take serious pause: one person cannot change mass behavior that they believe to be inappropriate or immoral. By bringing such things to the attention of the majority, it creates hostility against the person. So, in other words, accept the bad/poor/inappropriate behavior and keep quiet. Accept it. That’s just the way it is. Morality never wins – the mob wins. (this is a paraphrase, not quote)

I have been unsuccessful at creating or joining a mob that can truly make a difference.

So, I am DONE.

Done doing my due diligence just to be ridiculed and then, ignored- not treated – told that I should “get used to getting older.”

Done doing this – what ever  you want to call “this.” Trying to gain acceptance as a human being, trying to get someone to care enough to try and help me, trying to teach people to advocate for themselves as I have tried to do… Maybe not forever, but for now, I am DONE.

WHY?

Maybe this is the straw that broke this camel’s back: I don’t think that the things that are going on with me now (like a sudden 10 lb weight gain; almost daily, debilitating migraines; hair loss; very easy bruising) are something I should just “get used to.” (Thanks for that sage advice, Doc.)  Just because simple blood tests show me as “normal” – isn’t it quite obvious things are far from normal? Example: I have had a bone infection for at least 4 months – it was discovered on a routine dental X-ray 2 weeks ago – but – it HAD been noted on an MRI in April. But, did ANYONE bother to address it – NO. I asked about the radiologists comment and was told not to worry. Who’s worrying? I just want such weirdness to addressed. Or should I just “radically accept” my conditions? (no, I’m not leaning towards the “church” of Mary Baker Eddy!)

Now, I am working on radically accepting that I am not going to get the care, attention, treatment, testing, concern and compassion others may be fortunate enough to get.

[If you are reading this, and are getting these things I listed in the previous sentence, please be joyous. Seriously.]

I am also trying to radically accept that my absence from the fight will not make one bit of difference on this overcrowded, selfish planet.

Now…I am DONE.

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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. 

 

After much contemplation, many rough responses from the hope-and-unicorns crowd, and watching yet another TED talk ( if you don’t know what TED Talks are – Google it!) given by ePatient Dave, I’ve decided that I want to shift my focus away from whining and ACTIVELY work change the face of health care as we know it today. I want to make a real difference.

I want to call doctors on their sarcastic attitudes about so-called “cyberchondriacs” and hold them responsible for dismissing patients as “horses” that think they are “zebras.” (We are are familiar with that quote.)

Let me fill you in on a brief example of 2 exchanges I had on an iPhone app called “HealthTap” that makes bold claims in their Mission Statement such as: “We’re dedicated to improving people’s health and well-being by providing our users personalized health information and free online and mobile answers from thousands of the best physicians in the U.S. Our goal is to help people better understand health, make more informed health decisions and find the very best doctors.”

(REALLY. Bullshit, not in my experience with any if their so-called experts.)

We’re also committed to our physicians. We want to help doctors better serve existing patients, find new ones and build their reputations by We’re also committed to our physicians. We want to help doctors better serve existing patients, find new ones and build their reputations by demonstrating their expertise online.

We believe that everyone has the right to free, reliable, and independent health information. We also believe that the most trustworthy health information comes from medical experts and that the best health decisions take into account unbiased expert knowledge, community insights and relevant data.

We’ve created HealthTap to reflect these beliefs, and to be available to you, anytime and anywhere.

Again – BULLSHIT,

I want to tell these so-called expert doctors that tell me things such as. “There’s an old saying in medicine that ‘common things happen commonly. The corollary to that wisdom is that ‘rare things happen rarely.’ Baroreceptor failure (a condition that has been postulated by my docs IRL that I MAY have.) is so rare, that you can forget about it. look for a different explanation .’
Wow. Really??? Telling a person to just forget about a diagnosis!!! bold move. Essentially telling a patient that they couldn’t possibly have anything rare (especially after providing this service with my entire recent health (or lack thereof) history. Not only ballsy, but incredibly disrespectful truly and downright inappropriate.
Same doc (lucky freaking me) – different query: I have bizarre BP readings. Very. I have a well-documented autonomic disorder, that primarily effects BP regulation and responses in the body. I write this service about a very strange reading I just got – just my luck – same snarky doc answers my question. This time, his words of cluelessness were insulting AND stupid: “it isn’t physiologically (possible) to have pulse pressures of 10-20.i doubt those pressures are accurate and that your cuff is mis-sizedor that your device is inaccurate, mist likely the former. A common cause of this is a large arm. Is your arm large?”
Keeping in mind that the docs that answer these queries have access to ALL of our health info, from age to weight (hint hint) and all of our most recent diagnosis, data and medications.
And this guy not only told me I don’t know how to take my BP, I don’t know how to accurately record my BP, but I’m also FAT,
This is just a tiny example of the poor quality, “allegedly” cutting edge medical help available me via an app on our awesome iPhones. I have had several responses from docs just as rude and horrible – I just cannot believe that people are using this app instead of going to valid, genuine medical websites (not WebMD or “support sites” sprouted like weeds on Facebook, for example) but sites like the Mayo, Medscape, NEJM, MedWhat, UpToDate, etc.
I want to have an effect on sites like this HealthTap – they make bold claims, then treat educated people in distress like dolts.
I have more stellar examples of rudeness and incompetence. But I won’t bore you,

I want to change things for patients. I want to make THEM the respected person in the doctor-patient relationship, I want patients to be keenly listened to as if they were the most important person in that doctors’ office.
Because they are.