Archive for the ‘about me’ Category

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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.

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. 

 

This is NOT going to be another rainbow, unicorns and bunnies post on using some natural substance, or some new form of yoga or meditation or voodoo acupuncture.

This post is about Transcranial Magnetic Stimulation (TMS). I will not bore you by droning about how it works and the successes it has had treating major depressive disorder (and migraines). You can do that here, an update here (this is a Medscape article – it may require signing in, but I’m sure that anyone reading this blog would have the sense and chutzpah to already be a free Medscape member! – or, here’s one last link from the company that made the machine used during my treatment course.

My depression is pretty much just the usual chemical state of my brain – BUT – this baseline depression has been grossly intensified by some exogenous events of late. My depression over the past year feels as if I was trapped inside of an F5 tornado.

An F5 tornado (photo source unknown)

An F5 tornado (photo source unknown)

Imagine that for just a moment. Try NOT to pay attention to all those things whipping around your head at impossibly high rates of speed – the heavy, black debris that keeps you from seeing anything but what is swirling around you – and try NOT to feel the fear, anxiety and despair about your precarious situation.

Now imagine someone trying to “snap you out if it” with platitudes, CBT, affirmations – or telling you to meditate to feel better. (I’ll bet you’d like to imagine crashing into them with that F5 tornado, huh???)

[Just a hint, people – never tell a depressed person to “snap out of it,” “grow up,” etc. It is a thoughtless, selfish act of cruelty to do so. See this link from psychcentral.com for a more complete list of things NOT to say to a depressed person.]

I have tried at least 19 different antidepressants over the past 30 years. I have tried every alternative therapy. Nothing has worked, or, I had horrid side effects  to many medications, or, how my body processes them (due to several genetic mutations I have known as “MDR” – multiple drug resistance). Hey, I didn’t choose my genetic makeup. My apologies to the medical community.

So, when it became obvious that I had to do SOMETHING about how depressed I had become over the past year, I was given 2 treatment choices (covered by insurance): TMS or ECT (electroconvulsive shock therapy). Of course, I chose TMS after much research into its origin, efficacy and safety. (And, I have never met a person that went through ECT that came out of the treatment course with their personality and intelligence intact. Nope- not the treatment for me.)

Bottom line: the TMS worked!!! I was a new person in about 4 weeks. Seriously, I can’t EVER remember feeling as good and as “normal” as I did – and it was awesome!!! My sleep and appetite improved. I wanted to do things and go places. I was even able to tolerate my chronic pain a bit better as well. And, I had much fewer migraines!

What is the treatment like???
It’s 36 sessions – 30 of them consecutive (5 days a week for 5 weeks), then 3 per week for the next 2 weeks.
I sat in a reclining chair, a cross between a big dental office chair and one of those used in blood-donor labs. I had to put those squishy ear plugs in my ears since the decibel level of the treatments can be loud. White paper tape was placed on my forehead to mark the positioning of the contacts. The portion of the machine carefully placed against my head was relatively small, and had 2 contact points, one on the left side of my head, the other a bit towards the right side.. A chime sounds to let me know the magnetic pulses were about to begin. (I liked that – with my startle response I would have jumped out of my seat if the pulses just started up sans warning!)  I will be honest. The treatments  – 4 second “trains” of magnetic pulses, followed by a 32 second respite in-between – were quite “uncomfortable” at first. It was not a “tapping” sensation as described in the research literature. It felt more like a repetitive bee sting – or a woodpecker with a large, sharp beak pecking at my head for those 4 seconds. As the treatments progressed, I grew accustomed to the feeling. Each session lasted about 50 minutes. Watching TV or chatting with the nurse during the treatments helped me acclimate to the weird feeling. I am grateful I had such kind, engaging nurses to monitor the treatments.

The issue with this treatment is this: the effects don’t “stick” with everyone. After less than one month of being without treatments, I already feel that tornado approaching again.

Twice weekly maintenance treatments are recommended by advocates of the therapy – and I now can completely understand why now that I feel the effects wearing off – but insurance doesn’t cover them. Of course not.

Each 50-minute treatment is $350 w/o insurance coverage. There is no way we can even consider maintenance.

Well, at least I got to know what it was like to feel “normal” for about a month. And, my husband had a happy, fun wife for a brief moment in time.

I’m grateful for that time, and to my TMS doctor for helping me decide to try the treatment, and helping to get the treatment approved by the insurance company

I honestly think the insurance company would just rather see me dead. There really is no alternative for someone like me. I CANNOT take any drugs. 30 yrs (off and on) of talk therapy hasn’t done much more than give me something to do on a regular basis.

As the tornado envelops me once again, I will try to remember what “normal” felt like. I imagine I will be way  too busy dodging self-hatred and anger at myself for being this “in-valid” person, like before. And – mustering the strength to “put on the mask” so others can’t see my pain.

If insurance companies would cover maintenance treatments, think of how much money they would save, not having to pay for the traditional care of someone like me…all that useless talk therapy/group therapy, etc….and all those medications that were useless or caused more problems… I think about how much better my life would be. And how much better my husband’s life would be. And it makes me even more depressed knowing that I make my husband miserable because of my health conditions.

Based on what I have read about others’ experiences with trying to get coverage for TMS maintenance treatments, the insurance companies pretty much stop short of saying they hope we will just off ourselves, as that will save them money.

If I can’t fight that tornado anymore, I hope that Harvard Pilgrim health insurance throws a party so they can celebrate how they selfishly helped one more person leave the planet. I want them to know that if they weren’t so ignorant about people with conditions like mine (just another zebra), I would be alive, and be a happy person with a happy family. But thanks to the judicial-esque decisions of their “death panels” (just an affectionate term for their grievance boards) – they will decide that I’m simply not worth it. My demise will be their fault. They left me with no other option. Oh, and thanks to the US healthcare system as well for supporting their ignorance.

Here we go again – something that links directly to doctor-patient communication, and doctors attitudes about their hard-to-diagnose patients impacts us in ways they never imagine. Perhaps the health community should rethink their approach to patients like us…and maybe then we won’t have the issues that this blog by Michelle of “Living With Bob” discusses.

If you have a chronic, but invisible illness, you may have noticed that there lacks (for most zebras) the rally and support experienced by those with more visible, well-known conditions.

Friends and family members makes passive-aggressive comments about your constant “issues.” Or, they stop including you in their lives, period.

Michelle, wrote an excellent post about this yesterday.
Please read it here

Regular readers of my blog will know this is something I’ve had to endure for several years now.

What baffles me is how ignorant the doctors are…you present with several bizarre, subjective (not objective!!) and tangible conditions, a history of hospitalizations, surgeries….yadda yadda yadda…and STILL they question you, almost implying you are imagining all the problems you have.
The day I can will my blood tests to be abnormal (as they are) is the day I’ll be Queen.

My support comes mostly from strangers I’ve only “met” through the interwebs – others just like me, with exactly the same conditions – or others that are wonderfully empathetic. But no one IRL.

So, what has your experience been?

Have you been abandoned by friend and family?
Do doctors constant question you about “really” being unable to work?

YMMV – I’d still love to hear your about experiences.

I just spent three hours researching the advances in pain neuromodulation technology, suitable for someone with my condition. I had a conversation with my anesthesiologist that had left me “hopeful.” (I will live to regret feeling this way. Just wait…) Based on what I found, perhaps they’ll have something suitable for my condition 10 to 20 years after BItcoin becomes the World currency – not in 6 months, and not in a couple of years like he had mentioned.

So much for “hope.” How dare I think positively about the possibility that there might be a treatment out there that would be helpful for me.

As I have always said, “there’s no room in medicine for hope or unicorns.”

I have reached the end of my rope.

These sleepless nights are complete hell for both me and my husband.

My pain doctor tells me that there are no options left for me – in the United States anyway, until the U.S. decides to catch up with the needs of patients like me, as have other countries in other parts of the world the recognize that patients with chronic pain need pain relief – other than drugs – so we can sleep.

I’ve tried every intervention, Eastern, Western, New Age, etc., all to no avail. I’ve had six surgeries just for this pain issue. And I am STILL left with miserable pain that keeps me up at night, that now, due to the fact I can only lay on one side, my L rotator cuff that has already been repaired twice is re-torn.

I am left without options. Basically, I am a useless pain generator that takes up space in my tiny condo and hurt myself somehow whenever I try to do more than walk across the room (i.e., laundry, vacuuming, emptying dishwasher, etc.).

I’m not even going to mention the other chronic health issues I have to deal with. Compared to this pain issue, those are soooo secondary.

Please don’t tell me to try this exercise or that therapy or meditate or pray or try yoga etc. I’ve done all that. Remember, it’s been almost 17 years now that I’ve been dealing with this. And it’s been almost 17 years that I’ve been misdiagnosed by doctors. I have FIVE pages of “interventions I have tried…and yes, I have seen a Shaman and had my Chakras cleaned. And had prolotherapy…I just know someone wanted to throw that one out there.

Most people are “new” to the chronic pain community…they have suffered only a few months or a few years. I’ve lost who I was  – my life, my career, my motivation, my friends – all because of being a person in chronic pain. Try 17 years of pain….multiple surgeries….countless treatments…and still being in pain.

And alone. No one wants to be friends with a person that has chronic health issues.

No one wants to help a person in chronic health issues,

[I’m not bringing up all the misdiagnoses that occurred since I was 12 years old…That’s a whole other set of stories for another time.]

My point writing this blog entry?

To illustrate that all the good intentions, the finding of promising research, and having a great PCP, really doesn’t make a difference when there is absolutely nothing out there, short of suicide, that’s going to take away this pain.

Those of you with chronic illnesses know that finding a support system is not easy. I don’t have a support system. Literally – well, other than my husband, that can take me to an OCCASIONAL pain management appointment. Since he is not allowed to take days off from his job without repercussions, he can only do this on work holidays. This means that the treatments that I’m able to receive are few and far between, and not in line with the recommendations of the doctor.

Nope, and there’s not a single soul on the face of the planet, that has the time, inclination, ability, desire or compassion to help me get to these appointments that I desperately need to go to to get the help I need.

I know. I had the pleasure of being humiliated when I’ve asked and watched them struggle to come up with excuses as to why they “can’t.”

Perhaps is just because I live in Massachusetts, and that’s the way people are here – too busy and too self-involved to help anyone else that’s in need.

My suggested solution?

How about a service, something like “ZipCar,” in which  you can “rent” a “responsible person” to accompany you to these appointments and drive you safely home after your procedure????

Hmmm… I wonder if TaskRabbit offers a similar service…I know that works on a bidding system. …

[Yes, I know there are medical transport services available now, but they charge exorbitantly high prices (minimum $250 PLUS mileage!!!!), and that is not exactly budget-friendly someone on disability.]

Ideally, some altruistic person or agency could open up a respite home for those in chronic pain like me. We could all be put together so we are no longer a burden, a hassle, an annoyance and/or exasperation to what family we have left. And, we would not annoy them when we can’t sleep through the pain that we are all in all night. We could all sit u together and try to distract each other from the pain we are in. (Like me, tonight.)

Oh, wait. That won’t work, either. This is Massachusetts. No such place like that could ever exist here. Never mind!! What was I thinking?

Remember the saying, “an ounce of prevention is worth a pound of cure.?” Well, I’ve recently discovered that an “ounce of prevention” doesn’t exist anymore. Must be inflation. You must wait until you need the “pound of cure.” Like loaves of bread for $1.00 and gas for less than $2.00/gallon, it’s a thing of the past. (I will offer a qualifying statement – perhaps that is just what the experience is here in big-city teaching hospitals, where doctors wear multiple hats and patient care is often not a priority but a minimal portion of their daily responsibilities – or that’s what I was told by a doc that works at one of these big teaching hospitals in Boston.) Even if this is true, the text below describes with much disdain my current experiences.

I’ve been absent from the blog world for a while. Why? I’ve had several bad experiences recently with the medical community. These have made me take pause to re-evaluate if all this blogging is really worth the effort I put into it.  And I am mad as hell about what I’ve ben put through these past couple of months. There is no “hope” and “rainbows” and “support systems” to fix these problems – and please – don’t dare mention anything about unicorns – there are NO unicorns in medicine. Only zebras.

What I have learned?:

– Doctor-patient communication is NOT the major problem we all think it is. It is DOCTOR-DOCTOR communication. Most docs make a respectable attempts to communicate with their patients during the office visit. It’s AFTER the visit that everything goes down the tubes. For example, one would expect the specialist that a PCP sent a patient to see to at the very minimum, to follow-up with that PCP in some manner. So far, I’m 0-4 in that category. Even phone calls from my PCP’s office are ignored. Pathetic. So, I’ve spent money and time and received nothing in return.  That’s $35 per visit x 4. Plus mileage, train fares, parking costs, time off from work that my husband had to take to bring me to these appointments. And we get – BUPKUS.

Hey – all of you exalted specialists in those fancy teaching hospitals – please remember that patients can’t get an appointment to see you on their own –  their PCP has to refer a patient to see YOU. Don’t you think they are there for a real REASON?

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– Major teaching hospitals are touted as “the place” to see specialists because they “work together” and “do research” on unique cases. Well, I’m proof that unique cases get kicked to the curb and get ignored.

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– Doctors within the same practice groups don’t communicate or read what is in the charts on the patient they are seeing. I was degraded by a “new” doctor that quite obviously didn’t take the time to talk to my primary treating physician at this particular clinic, and did not even peek at my SIXTEEN years of history of my condition in their computer system. The 6 surgeries and 5 pages of every type of modality that I have tried over the past 16 years was simply ignored. Just more waste of time and money and mileage. Of course, no resolution, or offer of any solution was presented, other than – get this – “have you tried “healing touch?”

– I was told point-blank that my “disease process” was not active enough to be considered treatable. This is in spite of all kinds of abnormal test results, objective physical symptoms (and I take pictures to document them) and bringing my husband as a witness to my appointments to basically say ‘ “do something – she needs help!” So, I’ll come back when my disease process is so advanced, I’m close enough to death – perhaps then I’ll be interesting.

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– Not one single doctor has taken the initiative to look at all my symptoms and noticed that they ALL fit neatly into a neat package. They are all related in some way. Yet, each is so concerned with treating just the right pinky finger or the left side of the pituitary gland, I am left to get worse and worse and worse. – Thanks to Obamacare‘s EMR mandate – every single hospital I go to has completely different medical history on me. And, there is NO POSSIBLE WAY to get this corrected. I have tried. Why?  Because the brilliant author of the ACA forgot to require reciprocity among hospitals’ EMRs…and completely closed up the ability for patients to correct mistakes they find in their health records. I got this info direct from the legal department of a VERY large hospital here in Massachusetts. Please don’t argue with me on this one – argue with them. I’ve been through hell and back with three different hospitals on this one. One of them has banned me from talking directly to the doctor I saw – I have to go through “Legal” – as THEY made an (honest to goodness) Federal case out of the fact that an incompetent tech they have employed at their hospital entered all of my meds, medical history and allergies incorrectly into their computer system, and silly me, I tried to have it corrected.  Bad Lori!! I just should let the hospital believe I’m on meds I’ve never been prescribed, not let them know I have some severe allergies to certain meds, and that I have some serious chronic health issues. How stupid of me. Thanks, Obama, for not letting patients be allowed to correct the mistakes that incompetent employees at hospitals make in their own medical records – and for making sure that was in your 2700 page book of rules, most of which have nothing to do with health care.

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So, what the heck is going on????

In my not-so-humble opinion???

The #1 problem: Doctors are NOT interested in communicating with EACH OTHER.

– They are willing to “play nice” with their patients during office visits (most do) – but beyond that, the paternalistic God complex still exists. (male or female docs can be afflicted with this – it is a term of art referring to the attitude that they think they are immensely better than others that did not attend medical school.)

– The strong belief that women are simply “attention-seeking” as they go from specialist to specialist looking for answers is a prevalent as ever.  Please, see my previous post, “Does Your Doctor Believe You?” for studies that evidence these pervasive and disgusting practices that continue to disparage patient after patient, causing more harm to each of them at every visit.

Will I continue to blog?

Is it worth it?

Does anyone care what is REALLY going on?

Your thoughts – I’d be interested to hear what others have experienced.