It was no big surprise when I received the long, white envelope with the Georgia Composite Medical Board logo on it that the outcome was a bust. Georgia’s track record for disciplining doctors for infractions is especially bad compared to … Continue reading
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Trump Presidency Bad For People with Chronic Illness/Disabilities
Tuesday November 8th’s 2016 political upset was a wake-up call to all of us in the chronic illness community that we have our work cut out for us when it comes to our quest for respect, equal representation, and full inclusion (which includes having our medical needs met in a timely manner).
The worst of it is not just the opinions espoused by Donald Trump, but that these same bigotted opinions appear with such frequency among average citizens in modern society, and that they can and do drive the making of public policy; AKA…the rules that govern our real lives!
Despite that many are uncomfortable discussing and even thinking about politics, the reality is that where the rubber meets the road policy gets made with or without our input.
The challenge in the face of such a punishing blow as we saw earlier this week is to stay engaged and not give up the good fight for what we know is right. Better that policy be created with our input than without, and under our watchful eye than in the secrecy of smoky back rooms.
Ari Ne’amen, the President of Autistic Self-advocacy Network, calls the election of Donald Trump “a disaster” and predicts that if Trump actually follows through with the things he has stated he plans to do once in office the risk for people with disabilities is serious and very real.
We already know that one of Donald Trump’s big goals is to “repeal Obama-care” the Affordable Care Act. Along with this is the Medicaid expansion for people whose income is too low to qualify for the Affordable Care Act Insurance Market, large numbers of working poor who otherwise are cheated out of health insurance benefits by greedy big corporations who employ them often at starvation wages, cut their hours, and pull other ploys to avoid providing them any long-term job stability and financial security just to pay the top brass more. He has even stated that he’d like to do away with a minimum wage altogether! (Clearly he’s not looking out for the American worker’s best interest, but instead the interests of big corporations).
We already know that Donald Trump is unsympathetic/unempathetic to the plights of undocumented immigrants who have often had to flee deadly drug cartels and other terrorists on an emergency basis to come to the US for safe refuge.
His comments regarding Latinos are especially heinous referring to them in such derrogatory terms as killers and rapists , casting aspersions upon the Mexican Government as if to imply that infiltrating our country with unsavory characters were their intent!
He kicked a New York Times reporter of Latino descent out of an Iowa news conference and had him forcibly removed, and he has made derrogatory remarks about former candidate Jeb Bush implying that he was unfairly biased for Spanish speaking people because his wife was Latino. Most distubing of all anti-Latino comments was his response when confronted with a situation in which a Hispanic man was beaten in his own home by Trump supporters; stating that his supporters were “passionate”.
No, I’m sorry to break it to His Highness, but THAT’s not merely “passionate”. THAT is a HATE CRIME! “Passionate” is peaceful protest, or a civil debate of the issues.
His blithe response and gross minimization regarding this act of discrimination, hatred and violence is dangerous in that it has the effect of normalizing something that should never be socially acceptable in a civil society! It tells others out there who do not want to control their anger and who believe the rules and laws don’t apply to them that violence is OK as long as you are doing it in the name of a belief (however instrinsically immoral it may be). The now President Elect almost seemed to gloat over the fact that such violence could be passively incited in his name.
We must ask ourselves; if he’d turn his head to this sort of hate crime how many other civil rights issues will he turn his head to as President?
And it’s not only immigrants he disrespects. It’s women, too. I think most of us have seen at least a few off-color comments he’s made on the news or on Twitter, coverage of his intention to reduce a woman’s right to free choice and other equal rights issues for women such as opposing equal pay in the workplace, but you may not have been aware of this very graphic video which caught blatently sexist and denigrating comments he made about/against women here .
Notice here that Trump dismisses the severity of his salacious remarks and fails to take responsability for his clearly treating women as though they were objects to be conquered for his own narcissistic gratification. He only apologizes that anyone “was offended,” not that he did it. Sound familiar??? It’s the same sort of non-apology Emory Healthcare issued in their letters which stated “sorry you aren’t satisfied.”
And speaking of big corporations; Trump has on numerous occasions stated his intention if elected to roll back regulation on big corporations, so it is likely that what happened to me is not the last time this atrocity will happen to an innocent patient, and the offending healthcare corporations will get away with it. If anything our country is in need of more regulation of big corporations; not less!
They’re already running rough-shod over us individuals and the fox is charged with guarding the henhouse leaving big gaps in justice for those with little power in our society. Funding has already been cut to state and local programs such as Legal Aid, and to federal programs charged with going to bat for people who find themselves discriminated against and stuck out in the cold.
As I have outlined in earlier posts; people with Autism/Aspergers and other little-known and poorly understood conditions that frankly doctors and healthcare systems would rather pretend don’t exist than to treat receive short shrift when it comes to services. They are considered costly and time-intensive and therefore a bother to such corporations, so there is much pressure to down-grade the level of care to individuals with such conditions, and if that doesn’t fly they are dumped summarily with very little public outcry resulting and next to no real advocate.
Considering that the numbers of people with many of these (as corporate healthcare sees them) “nuisance” conditions are rapidly becoming the majority and (it goes with out saying) these are a formidable voting block. This is what we must impress upon the masses and upon Congress in our efforts to educate and consciousness-raise.
While our kind may still be considered less crucial/less important and our views less influential in forming our country’s priorities, we are a rapidly growing segment of the population and one day soon we will be a demographic that politicians wish to court.
Trump seems to have a penchant for insulting people with disabilities employed by the media. I guess deep down (well not so deep really, LOL) he doesn’t believe that people with disabilities can be strong contributing professionals of news agencies.
During an NBC News interview he slammed a columnist, Charles Krauthammer, who is paralyzed from the waist down specifically using his disability as the butt of his mean joke; “Then I get called by a guy that can’t buy a pair of pants, I get called names? Give me a break.” It wasn’t enough for him to insult the man’s stance on the war in Iraq and other topics, and to call him “underrated,” but to attack his having a disability and his needing help for that disability is beyond the pale.
If anyone has any doubt that a Trump Presidency is harmful to the interests of the ill and disabled you have only to watch this clip in which he mocks in one of his speeches the spasticity in a reporter’s hands, Serge Kovaleski who has arthrogryposis, a joint condition.
He later goes on to accuse him of “grandstanding about his disability.” Further, he questions “his level of intelligence”, painting him as a nobody that is too unimportant for Trump to remember. Nice attempt at gaslighting, Trump, but a big fail; the sarcastic impression shown in the above video speaks for itself.
Pretty appalling, huh! You might expect this kind of juvenile banter from a prepubescent hamming it up and trying to garner some street cred with his friends/peers by picking on those he views as easy targets, but not from the (now) leader of the free world (soon to be alot less free than before if we don’t stay on task in standing our collective ground steeled against the inevitable attempts to cut corners on those he deems not viable enough).
Trump’s assault on disabled people isn’t even limited to his liberal detractors.
Even veterans with disabilities have been subjects of his particular type of abuse, including John McCain about whom he openly stated that he didn’t understand why people considered him a war hero after being captured and held for years in a prisoner-of-war camp, forced to endure horrendous and permanently crippling torture. Trump’s audacious comment that he “prefers soldiers who were not captured” is another telling remark of honking disrespect and lack of empathy which gives a clear indication of his values, and motivations.
It strongly hints at his predatory and orwellian view of the haves versus the have-nots; the viewing of the underdog as somehow less viable, therefore less deserving than his more advantaged counterpart. His singling out of various groups to be badly regarded thus badly treated is another version of the concept of Untermenschen; a term coined in Nazi Germany during WW II; (translated: Under Man, or sub-human) made new again.
The type of thinking Donald Trump engages in is of the same mind-set espoused by Hitler and other such dictators who went on to carry out their horrendous bias in policy. It seems I am not the only blogger who sees that parallel!
Michelle Obama stated it very accurately in a speech made earlier illustrating why Donald Trump is wrong for America.
She says; “Maybe it’s easy for him to mock people with disabilities because he’s unable to see their strength and their contributions.”
That, my people, is the root of discrimination; the inability to see a certain demographic’s value and the inability to view them as bringing something important to the table.
This man clearly lacks the maturity and seasoned professionalism (not to mention the experience) required for the job of President of the United States of America, and much more than merely annoying, his rhetoric is dangerous to those who due to medical conditions require accommodations in order to have as much quality-of-life as possible. In politics, as in life, one might be able to con (or buy) one’s way into a job, but doing the job day in and day out is a whole other kettle of fish!
It’s appalling that anyone would want somebody like this to be President, and just as appalling to hear some of the excuses being generated for his prejudices and blatant disrespect for those who are less advantaged than he. (Note that he is constantly telling us how wealthy he is. And how does that at all qualify him to run the country which includes mostly people who are not wealthy and whose lives in no way resemble his?)
Maybe in time those who voted for him will see that this was a big mistake and that in the end this is not a man who represents their values, and maybe they will move for a reversal. (I hear that Michael Moore predicts he won’t last the 4 years). Only time will tell, but those of us who’ve known this all along must continue to shine a light on the humanity that is lacking and the restoration of which is so badly needed, and keep working to improve things for people with disabilities/the chronically ill.
For those who are interested in an update on me; I will get one up soon. For a number of reasons I have found it hard to write over the past month. I had a spoon left tonight and just felt that this topic was screaming to be put down on paper given the timeliness of the election, as its ramifications affects all of us.
In The Aftermath of Emory’s Wreakage; Still Sick and Essentially Untreated. What Now?
Despite that my son’s surgery and his doctors’ dedication to providing him the best care giving me some hope that there are doctors out there who are kind, ethical, and want to go the extra mile for you, there was still one pesky problem that wouldn’t resolve itself spontaneously; that of the tainted medical records from Emory.
Although I’d tried to put it out of my mind, the very real danger that the libel contained in these records may continue to do damage to my reputation outside the offending system and thus prevent my receiving care soon enough to prevent dire consequences was and is a very real danger.
As I sat across from Dr. P. the new GP, a woman of East Indian descent (most likely second generation) who was young enough to be my daughter I fought through the horrible flu-like aching in my muscles, weakness, and feverishness to engage her on the topic of my referral to Vanderbilt after having left numerous messages with the office to obtain the current status of the process and to try to find out if, and when she’d fill out the necessary paperwork. I’d recently been advised from one of the receptionists on the phone to obtain 3 release of information forms; one addressed to Emory for her to receive, one for Vanderbilt, and another for something related to Piedmont’s records.
The disjointed and partial communication via several different office staff when I’d called in over the past few weeks was hard to decipher and some was contradictory, merely stating that as far as they understood I didn’t need a referral and that I could refer myself. Now after given my latest instructions for these 3 seperate release forms I wasn’t entirely sure which records they needed released and what the doctor would think, and then do after she read what was inside. I had decided I didn’t want to do anything hasty and wanted to bring a copy of my own and discuss with her what she thought would be relevant and what not necessary before releasing such bombshells into Piedmont’s system, nor to the out of town specialists. While the poisoned pills contained are complete lies and have no basis in truth the infectious and alarming nature of such coded language passed on from doctor to doctor can and does put my future health and even my life at risk each time a new doctor might read such derrogatory comments written under the guise of “medical opinion”.
As I sat in my wheelchair facing this new doctor I wondered why now it was suddenly so imperative to her that she have these records which contained so little of clinical use and yet had so much potential to destroy my future. What was once a mere suggestion was now presented to me as an ultimatum, and I don’t take well to ultimatums. If this was her idea of forming a good solid doctor/patient relationship and inspiring trust she had a very strange way of showing it.
A feeling of extreme aversion came over me and with it an anger at myself for being so weak as to be at all pressured by it. I really wanted to just say “No way! Forget it! You can do the tests that have been done all over again but you’re not using these records!” but then what if this time she really was going to follow through? It was a total crap-shoot as to whether this would get me to where I needed to go or whether this throw of the dice was going to lose me the farm. It was a no-win situation, and in my estimation, a bad risk either way.
Now, even more ill than I was a few weeks ago I weighed my options and neither looked good. None of the other GPs I’d interviewed who seemed at all compatible were anywhere near writing the referral and one had wanted me to find yet another local neurologist and for him/her to be the one, tacking on God-knows-how-much more delay time onto my diagnostic process (and thus to my treatment).
Dr. P. waved the form from side to side in front of her. “You know” she prefaced, preparing for a fight with a rather aggressive offensive maneuver, “I don’t have to fill out this form.” Then testing the water further, “I could have said…Ya know what? No, I’m not filling this out…”
“Oh yeah?” I thought internally? “Well guess what, miss smarty-pants…then what’s my incentive to stay here one moment longer?”, the words flooding my mind so close to the tongue I could taste them. But the lack of any real incentive for me was exactly her game plan and it was more stick than carrot. Behavioral conditioning 101; that may gain compliance from the patient in the short-term but at much greater cost than benefit to the relationship as a whole. In some respects her approach was Machiavellian, yet Napoleonic in its delivery. “
…but I’m doing it because I care”, she finished. “That should show you something. You need to trust me” she pressed on. Somehow, actually it had just the opposite effect on me. The way I received her statement was more like the feeling one has when a person who has offended you apologizes and then immediately nullifies it with a narcissistic self-justification and the suggestion that it was you who made them do whatever wrong they’d done to you in the first place. At that moment I wasn’t sure which repulsed me more; her backhanded self-proclamation of benevolence, or my withering attempt to stand my ground.
Intellectually I knew that while not required by law, this was no extravegant favor she was extending outside her job description, but instead what any good GP should do for a patient (if it matters to her to deliver good care to her patients). Referrals and the paperwork that come with them are part and parcel of the routine work of a primary care physician being that they are charged with coordinating care across the various specialties that their patients need linkage to. However, her sense of her own power in this particular instance seemed to embolden her and at the same time shake my own self-confidence. I was back in that floundering zone again, the same one I’d been in the first time I’d met with Dr. V., and on that awful day in December when I was reduced to pleading for help at Emory’s ER, overcome by the uneasy feeling that I wasn’t “in Kansas anymore” but instead in an unfamiliar and quite scary place the parameters, and unwritten rules of which were near impossible to read nor comprehend. This is a place I don’t like, a brain-bending cause and effect that seems to make me lose all sense of time and space and send me down some weird rabbit hole. I grappled to regain my proprioception and perspective, losing my train of thought in my fluster to communicate.
Had it been true compromise I could have lived with that but it wasn’t that at all. Had it come from a place of partnership, strength and dignity then it would had been compromise in the true sense, but this…this was not free choice but something else entirely. I felt disgusting and at the same time manipulated. As bad as it was that signing a release of the Emory records could ultimately mean curtains for me if it closed doors crucial to my survival, even worse than that was how it made me feel about myself. I knew it was far from an even trade but this inner caving and shutting down process just seemed automatic, almost robotic.
I know what Bernie Sanders would have done. He would have stood firm on his position no matter his opposition. Suddenly I felt like a complete wuss and then hated myself for it just as quickly. What does one do in such a tough position? I really don’t know. Maybe there’s no easy answer. It was another one of those “Which do you want to keep? Your arm or your leg?” dilemmas, or rather “your life? or your reputation?” Without your life you cannot have a reputation, but without a reputation life isn’t worth living. Furthermore it could end up worse than a trade-off. I might lose both in the end. It seemed I knew what I really wanted to do but felt unable to do it, and no amount of logically thinking it through would help.
I’m trying to put a period at the end of these awful, incorrect, unethical, and libelous medical records but now I’m expected to drag them along from doctor to doctor. How could that possibly help anything?
I leaned forward in my chair, put my head in my hands and let out a pained grimace and groan, made one more attempt to make clear to her that such action might really cook my goose in the hands of the wrong doctor(s), and then the rest of my resolve deflated like a spent balloon. She claimed that her license was on the line if she were to for instance include Dr. Vs last doctors’ notes, and not her first (probably more hyperbole than truth), stating that if she included any of Dr. Vs neurological record she had to include it all. I found her reasoning very strange and illogical. No doctor I’ve ever met thought like that, not even Dr. H. at his worst. It more closely resembled Dr. Bs new locked down approach than any of the other doctors, but I’m not sure even he would have included material in a referral or entered it into Emory’s record if he thought in his heart of hearts that it might do more harm than good.
Therein lies the crux of the matter; to do no harm. The hippocratic oath was relevent when it was written and still is today. Although its wording has changed over the years the spirit of the message is very clear and unmistakable.
A doctor must not do anything he or she understands will hurt their patient. PERIOD!
Like I’d told Dr. Ps nurse, releasing libelous material written by those who are essentially your enemies is tantamount to volunteering a past supervisor as a reference at a job interview who has nothing good to say about you. “Would you do that?” I’d asked her, to which she had to in all honesty say “no”.
“Well, there you go!” I replied. “It’s the same principle!” The nurse looked back at me wide-eyed and dumbfounded knowing I had a very good point.
“Don’t you realize that every time I have to show these records to a new doctor I’m re-traumatized? Do you realize the gravity of the risk involved, and how upsetting that is? This is not an irrational fear, but very real” I told Dr. P.
“Yes, I know” the doctor responded, “There is the doctor/patient relationship but it comes down to choosing between what’s best for you and what’s best for me and I can’t do something that could place my license in jeapardy”she said. Although I’m sure her assertion that her license was at stake was a gross exaggeration, therein lay the ugly truth with all lame excuses stripped away; defensive medicine!
Realistically I knew that at least here in the state of Georgia nobody and I mean nobody is out to take doctors’ medical licenses (even in those instances in which they really should be revoked) so I know that state regulators are too busy to care about what parts of a patients’ medical record doctors are pulling to send to specialists and whether or not a doctor charts a patients’ symptoms. I wasn’t suggesting she break any laws but if in fact there is any truth at all to what she’s saying regarding this prohibition it is probably such small stuff that nobody would bat an eyelash, much less raise a major issue over it.
“My role is to look through and determine what’s relevant and what isn’t, and your role is to tell me your symptoms” said Dr. P. This, just after she’d told me that she thought it would be illegal for her to chart my symptoms since she could not verify them with hard proof, so then wouldn’t it be a waste of time for me to tell her symptoms if they hold no value in the chart? I went on to say that in many respects Dysautonomia is a clinical diagnosis anyhow, “and besides”, I replied, “how do you really prove near syncope and many of the other symptoms?” (short of completely passing out cold in her office at the appropriate appointment time). It was another impossible expectation, a bar that could never be met in the real world.
The look on her face told me that I was making valid points she could not dispute.
“It can take 8 years for a patient to obtain an official Dysautonomia diagnosis, precisely because these kinds of constraints make it next to impossible to diagnose anyone and everything’s so strict nobody wants to be the one to call it, and here in Georgia they don’t have the facilities for the few specialized tests that do exist, so what are you going to do? They could do a tilt table test but that won’t do much good unless it’s classic POTS (which I don’t think mine is). All you can do really is go on what the patient tells you.”
Dr. P. nodded in agreement. “I know.”
“I’m just so exhausted, I’ve been suffering alone with this already for at least 7 months, and then to add insult to injury it’s embarrassing to feel as though I owe each new doctor an explanation because of those people who took it upon themselves to sabotage my chart!”
“You don’t owe me an explanation. I believe you” she slipped in almost as an aside in the midst of our fast-moving conversation, her intonation lacking quite enough passion to be fully credible. I think I would have breathed a sigh of relief had I been convinced she meant it, but her painstaking caution throughout the office visit, and hesitancy to fill out the form until now was what gave me pause. The ER doctor in December told me that too, and then I found out she was only telling me those things to get some sort of compliance out of me; sort of a version of “You can catch more flies with honey than with vinegar”.
I kept looking for signs of the real reassurance I needed from Dr. P. yet it seemed that just when the conversation veered toward a meeting of the minds it whipped away like a boomerang and I was once again grappling to obtain some semblance of unity that conveyed that we were truly in this together in amongst all this chaos on top of my muscles aching unbearably, the severe fatigue, the weakness, the low-grade temp doing a slow and steady burn that was documented that day by the nurse, the histamine reaction that was assaulting my sinuses, its accompanying systemic inflamatory response, and the awareness all the while that I was being expected to throw myself onto a live grenade; to essentially kill myself in order to save myself. Odd dichotomy there!
She was pushing the trust thing pretty hard, approaching it more like a command than an invitation and it was precisely that method which made trust not possible. I told her that I couldn’t just snap my fingers and suddenly trust her, especially when she is insisting I do something I feel strongly is detrimental to me and could seal my fate and that after what has happened to me it will be a long time before I can trust any doctor. Trust cannot be a command nor an obligation I owe her as payment for something she does on my behalf in the course of performing her job. I’m a long way from convinced that she truly hears me and respects what I need, and pulling rank on me is not the way to get me to trust her. She has to earn my trust. “It’s a process” she said of the road from here to Vanderbilt. “You just need to have patience.”
“For how long?” I thought. It’s late and I’m not getting any better overall. Yes my symptoms wax and wan and different systems of the body switch on and off like a flickering lightbulb and alternate, but the truth is that my baseline is worse, and this “process” cannot be open-ended if I’m to have a good or even fair prognosis. I know that and I’m sure any medical professional worth their salt understands the concept of early detection and treatment and its impact on outcome.
When I see things working out in my testing and treatment, that she’s truly behind me 100%, and when I feel that our words are not merely whizzing past one another’s ears then and only then will I trust her or any other doctor, for that matter. The office visit ended like it did the previous time with my telling her what I needed to be reassured, and her telling me in one form or another she couldn’t give me that, and then her saying “I feel like we’re going round and round.” Well yes, it would feel that way because for the most part I think our priorities and beliefs about our roles are very fundamentally different. The distinction between where she sits and where I sit is that she can walk away from what’s happening in my body…I can’t. I’m the one with the most to lose if things aren’t handled correctly from here on out. I’ve got it all on the line. She doesn’t.
Maybe this is the closest I can get right now to a match from those local doctors available to choose from after my extensive search of the metro-Atlanta area, but I really question whether this is going to work out in the long-term. I hope I won’t come to regret doing what she asked before I left the office that day. I’m still not really OK with it.
I’m now in the process of filling out my section of the Vanderbilt form and in addition will fax her my BP stats from my November 2015 Piedmont hospitalization. Only time will tell what happens next.
Then the question still remains as to whether the whole thing actually gets submitted once I fax it back to her office and whether I’ll be accepted, and that’s still just the beginning towards coming home with a firm diagnosis.
Update on Seizure Surgery; Does He Or Doesn’t He?
Tuesday was a nail-biter with lots of buzz about collecting data and analyzing it with a fine-toothed comb. 5 or 6 Doctors and technicians filed into Quinn’s hospital room. Since the day before the mood was guarded, as the big concern was that during brain mapping that they’d find the area with the D-Net too close to the speech center of the brain and if that turned out to be the case it would be deemed too risky to attempt with the possibility that they could accidentally wipe out his ability to speak (and/or possibly to comprehend others’ speech).
Some were already scaling back their hopes, including his step-grandmother who has been a little leery about the whole idea of his going under the knife (well, laser, actually) from the beginning although she managed to keep that thinly veiled from Quinn, just dropping subtle and some not-so-subtle hints that she thought he should accept something less than a full cure. Just the day before some of the doctors began talking about other options and I could tell that it was swaying my son’s confidence. They discussed a neural pacemaker (which as it turned out would require alot of maintenence including uploading data regularly), and a few other possibilities which would involve some further monitoring to get an even more precise idea of all the tumor’s parameters.
The one big unanswered question was how deep the lesion goes, and there were not sufficient electrodes implanted to check it from all angles, but that would not be possible to arranage during this hospitalization and it could take several months to a year before they could even get to the point that they could determine the exact dimensions and how the brain-matter in the very close vicinity functions.
My son has been losing further brain function the longer his seizures are left to their own devices, and it’s no longer just a matter of inconvenience to him such as in his being unsafe to drive, but in recent years he has actually suffered increasing problems in certain cognitive areas. He just doesn’t think as well nor is he as equipped to care for himself as the average guy his same age, and often seems a little lost when trying to describe something to another person, and it can sometimes blunt his emotional reaction as well.
I knew that at this stage that medications aren’t stopping the damage to his brain nor are they adequately reducing the number of seizures enough so that the damage would not progress, so this has to work in order for him to have a chance out there in everyday life. The atmosphere yesterday morning before the mapping was thick with tension and uncertainty and though nobody came right out and said it, it was more what they didn’t say that made me uneasy. He’d already discussed other options with his doctors previously and none really gave much hope of adequate seizure control, so he came in here hoping for the new technique which would have the best success rate and the most permanent and safe results. Despite the deflated mood that was developing amongst the others I remained resolute that where there’s a will there’s a way.
As soon as he’d told me this new technique was available I felt that he could benefit from this and that the right doctor could make it a big success and I have never waivered from that philosophy. Dr. G. (according to Quinn’s general Neurologist) is one of the top Neurosurgeons in the world, and the minute I met him I felt confident he could do the job and do it right.
Success in treatment is a winning combination of factors on the doctor’s part; the skill, the will, and the ability to think creatively, and I knew that this guy had it. Sometimes you can just tell. Then the other half is the body’s ability to surprise us all. I encouraged Quinn not to give up hope yet. There was still the brain mapping. Nobody but his own brain at this point knew the outcome that was about to reveal itself.
Around 1:57 PM Tuesday several doctors and EEG Techs entered his room and introduced themselves.
They seemed a bit more upbeat than the group who had been in the previous day, and one of them (whom I am pretty sure was an Aspie and had a movement disorder) seemed to know what I was dealing with as his mother more than the rest.
The team began the mapping, testing one electrode at a time with a process involving delivery anywhere from 1-8 millihertz of electricity to a specific area of the brain. If he were to be deemed a candidate for the surgery there would be no or little interference with his speech as he was directed to identify objects and famous people and to read short sentences. If on the otherhand they discovered that stimulation of certain areas caused speech or comprehension to cease entirely then that would be of concern, indicating that these vital areas would be considered too close to the tumor which needed to be removed for surgery to be safely performed.
All waited with baited breath as the young blonde woman with her hair in a poneytail and what appeared to be about 1 Ct. diamond earrings (or CZs; I’m not sure) had her finger on the red button attached to a black box which delivereed pulsed electricity to a designated electrode. It made a ticking noise when pressed and Quinn was asked to repeat the sequence of instructions over and over as each electrode was tested.
Communication between the members of the team consisted of a number of fingers held up and and coordinates denoting particular electrodes and voltage. At first my son felt nothing or mild to moderate euphoria, but as time went on and they tested other parts of the brain he became violently nauseated and threw up several times. That was enough to send doctors and techs scattering, but after a few minutes he collected himself and resumed the procedure. It is quite possible that they hit something that tripped off his Autonomic Nervous System. It was nothing dangerous at that low a voltage, but it was scary nonetheless seeing him react so suddenly. The Vancomycin they’ve been giving him to prevent infection makes him nauseated as it is on and off, but there was no doubt that one of the stimulations triggered it this time…and very strongly!
A few other areas that were tested made him light-headed. The team paused in order to let his brain settle down and resumed where they left off.
As the mapping continued I could sense the exitement in the room growing and the clouds of doubt lifting.
One tall young man with dark wavy hair who was watchig the brainwaves on the monitor burst out at one point and exclaimed “This is incredible!” There was alot of nodding and thumbs up all around and I was pretty sure that meant it was a go! The team could barely conceal their excitement. Things were proceeding much better than predicted.
Next they tested an area that ventured into the visual area (I believe the visual cortex?) He noticed just a small area of vision that was fuzzy like an old fashioned TV going on the fritz, but it was a very small area restricted to the top of his visual field.
At the end one of the main doctors in charge of the mapping, a neatly choiffed and quick-whitted guy with GQ good looks asking him the questions explained to us that Quinn did very well and that it was encouraging that they ran into no problems with the area involved in speech or comprehension.
There were only one or two instances in which he had to search for a word, but other than that he zipped through it without hesitation. Thankfully the surgery was still on the table!
After this team left, the main Neurosurgeon Dr. G. came in wearing street clothes and in a very down-to-earth and personable way sat in a chair beside Quinn’s bed and began duscussing with us that he though Quinn would be right for the surgery. I could tell he wanted to make a way for this to happen and with the new data from the mapping his confidence had returned.
He recommended ablation with higher electrical current (possibly in addition to laser, but would think over the logistics that night when he got home). It was clear that the wheels were turning again and faith was renewed. Dr. G. was a man inspired to change lives for the better.
His fondness of Quinn was evident and it renewed my own faith that there are still some doctors out there who really do care and won’t leave you holding the bag when challenges present themselves, doctors who want treatment for the patient as much as the patient does. This is how all doctors should be and the right reason to work in the field of medicine. Quinn and I looked at each other and there really was no question that he should go for it.
Tonight (Wednesday, August 31st) at about 6: 10 PM when I had to leave because my transportation had been prearranged he waited in the que in pre-op for about 2 hours and then went into surgery around 8:00 PM after. I hated not being able to be there both before and after and had hoped to get a live report from the doctor when the surgery was completed. His step-Grandmother was able to go over there after I left, but Quinn and I have a special bond, even greater than many parents and children because he was sick as a baby and I saw him through several surgeries on similar tissue in his trachea.
For that first year he needed lots of special care and we were pretty much attached at the hip. He went everywhere with me and I rarely hired a babysitter because I didn’t feel comfortable leaving him with anyone else even for short periods of time.
I have always known when something’s happened to him such as an injury or accident or when he’s had a particularly bad seizure day intuitively even when he’s been geographically miles away.
Luckily it didn’t take long tonight to be picked up and the handicap transport vehicle got me home pretty quickly. I prepared some crispy hashbrowns and ate those with ketchup and while they were frying the phone rang. It was Quinn’s step Grandmother to say he’d just gone into surgery. She was waiting in the same waitingroom we’d waited in the first day when he’d had the electrodes implanted.
Apparently they are going to put him in another room when he’s out of surgery, so she had to take all his belongings out of there and keep them with her until they know where they’re going to put him.
He may get to go home tomorrow but I can’t imagine he would feel up to it that soon even though this surgery is less invasive than the open craniotomy style that they used to do most often. Judging by how much pain he’s had I really think that a discharge the day after would be overly optimistic.
It will be exciting to see the outcome; whether the surgery stops his seizures entirely. I know he really wants to be able to drive again without risking an accident. He’s had several in the past that completely totalled his cars and since then has been greatly limited in his ability to go where he needs to go, as the bus system in Athens is not great and most buses run no more than once an hour. His girlfriend’s car was having numerous problems and then hit a deer and was completely destroyed. She has not obtained another one since.
Service between Athens and Atlanta is not accessible by public transportation so when nobody can give him a ride he has had to take a commercial bus which operates regionally (sort of like Greyhound) which is more expensive than public transportation would be had it been connected.
Last year he wasn’t able to get here around the holidays or at any other time. The only exception was when he had the external seizure monitoring earlier that year and I came out to see him for that during the few days he was in the hospital.
I hope this surgery opens up many doors for him and that he will be able to drive again. It is likely to be at least 6 months before we know for sure if it’s done the trick, but there is a very good chance he may be seizure-free, and if it doesn’t rectify all of it then he has the option to come back and have it refined. I know that if he had not had this surgery chances are that he would continue to decline cognitively which would add to the limitations he already has. It came through just in time. He called me around 1:30 AM once the surgery was finished and except for some soreness in the areas where the electrodes were he’s feeling pretty good. So far it looks as though no collateral damage resulted. Time will tell whether all the seizures are gone forever. Thanks to all the dedicated men and women who made this a reality!
This is for you, Quinn, here’s to a bright future. I just know great times are ahead. 🙂 I’m proud of you for hanging in there even during the times you were in pain, persisting despite the nausea, in spite of the fear of the unknown to see this through.
Seizure Surgery Can Give Patients Their Life Back
I haven’t spoken much on this blog about my son and his situation (for obvious reasons) but I think now is as good a time as any to share the miracle that he may very soon be receiving due to advances in neurosurgical technique. This is a teachable moment that I believe will help those who do not understand to develop a more empathetic perspective and give hope to those, who like Quinn live with seizures that impact and impair their functioning every day of their lives.
First, I want to say that the individuals involved work for Emory, but they are their own entity in and of themselves as medical professionals, and without individuals who are willing to work on behalf of the patient no corporation can survive in the long-term.
The ultimate success of a procedure, any procedure, compliments of medical science in large part depends on the dedication and skill of those on the front lines who are carrying out the technique. This is why I always make the distinction between doctors at Emory and the corporation; Emory because there is a difference.
What makes up a good department is good people and the doctors working within the seizure clinic and seizure inpatient unit have been very good. So far I have found them and Radiology to be the best departments I have encountered as of yet. Today it has been 6 days since doctors implanted about 10 depth electrodes in my son’s brain and he is without a boubt feeling the effects of having a bunch of holes drilled in his skull and foreign objects jabbed into his gey matter, sleeping as much as he can to cope with the headache this causes, and not feeling much like eating due to the pain, but the doctors say that so far it is looking like he is a good candidate for the surgery which could return him to total ability again.
Now 32 and first diagnosed at arounf 14 years of age he has lived with a constant cloud above his head, waiting for the other shoe to drop; never knowing when the next seizure might come and throw off whatever he’s doing. For those who don’t know Quinn; he is probably the most generous and loving person you are ever going to meet. He has an innocence and purity about him that is often long crushed in others by the time they reach adulthood. He would give you the shirt off his back if you needed it and there have been times when he took personal risk to take odd jobs he really wasn’t safe to do so that he could support he and his girlfriend when she was out of work.
When he graduated from high school he tried a number of work settings and often got very good reports from his supervisors, especially those jobs involving customer service and sales. He was often viewed as one of the top sales people they had, but when his seizures eventually reared their ugly heads those same employers lost respect for him and either implied he was faking or they treated him as though he shouldn’t need accommodations for them and ultimately fired him.
There was the time he had a Grand Mal in a factory setting and sprayed adhesive from the automated hose he was using all over the floor, the time he stopped speaking when a lade behind the fish counter at a local grocery store was asking him a question and he could do nothing but stare back at her as she screamed and berated him for his inability to respond. Once he came out of it and regained his speech function he tried to explain it to his boss, who eyed him skeptically and told his that nevertheless this was unacceptable, leaving him a catch-22.
There have been many employers and many scenarios, somethimes he’d have to take the whole day off after waking with an especially brutal Grand Mal or a serious of Complex Partials because of residual disorientation. Unfortunately most employers don’t really get it that this is a valuable employee so one should nurture and accommodate because when he’s on he’s fantastic as an employee, a model one in fact! After many such experiences he finally had to face the fact that this wasn’t working and he had to apply for Social Security Disability.
Quinn knew that it would require that he re-enter the workforce on a higher level than the entry level he’d been used to working before he could be assured of the respect he deserved in the workplace, so after some brainstorming he decided to enter the Associates Degree Program in Computer Technology at Athens Tech. There were transportation hurdles to overcome because in Athens, GA. where he lives the public bus system is not great and he often had to walk long distances to get to and from schook in-between, but he made it and earned his Associates Degree! Now his dream is to go further and get at least his Bachelors at Southern Polytechnic (which is known for its quality in education in the computer sciences).
For most of his adult life he has been hindered from living a fully functioning life and was told his condition (referred to as a D-Net; a benign brain tumor made up of excess neural tissue) was inoperable.
He began to believe he’d have to just live with it but then back in June we got word from his doctor (Dr. E.) that there was a new laser surgery technique available that had a higher success rate and lower risk than the traditional re-section surgery which has been Gold standard in the past. Since then he has undergone all sorts of testing (imaging and monitoring) and had his case presented before a committee to determine whether or not he would qualify.
Until recently Emory referred most patients considering seizure surgery to Augusta. For many years it was the foremost seizure surgery and monitoring center in the state. I know in recent years they’ve suffered budget cuts, so that could account for why there have been more neurosurgeons coming here to practice.
Now with depth electrodes in place (a surgery that in and of itseld took about 5 hours) his next step is for them to test the functioning of various brain areas (called Brain Mapping). This involves hooking him up to a machine to see the resulting brain waves as he carries out certain functions (for instance they may ask him to prounce or spell a word, having him calculate simple math, etc, and see what his brain does in response. As we speak we are waiting for the doctor involved in doing this process to arrive and the nurse told me that he may come in either today or tomorrow depending on his schedule. They moved Quinn to a special room yesterday in preparation with certain hook-ups for the added machinery this requires. Now we are just waiting for some word on the doctor’s arrival.
My assistant and I arrived around 11:00 AM and there was a CNA with the hospital present from earlier this morning. Usually they leave once myself or another relative is in the room as we will be here for awhile. Quinn was in pain and not feeling much like talking but she was going on about some toddlers who were on the news the night before who had climbed the fence and “escaped”. I’m sure although it was somewhat interesting my son wished she would be quiet, as I know how it is when your head is really killing you. Sound can be bothersome, especially after an assault on the brain such as surgery. Yesterday the light coming through the window was hurting his eyes and his head and so I had a tech put a blanket over the blinds and that has helped alot.
I had my “ancient Chinese secret” from a guardian angel in this morning’s coffee and I am grateful for that over the past few weeks given that my condition is still not being treated and this is the only way I have been able to get through the long hours at the hospital with my son. I noticed more stamina and longer stretches between my pain since yesterday. I need to be sure and order more as soon as I can afford it.
Once my son’s brain mapping is complete and they know exactly the parameteers of his seizures and where vital brain functions are located structurally (what areas to avoid) they will have all the data they need to be sure it goes safely!
There’s just one more step after this is complete and that is for the whole group of doctors to agree on his getting the laser surgery. I know Dr. E (his General Neurologist) and Dr. G. (his main Neurosurgeon) are solidly behind his getting it, but apparently they all have to be on board with it. (I’m not even sure how many are involved total, but there are probably 5 or more).
They’ve all agreed so far that as far as getting the required number of seizures on tape he has met that criteria. Now comes the home stretch. If he can get through these last few preliminaries he will be on his way to the possibility of a total cure! This happens in only a small sub-set of patients and the best candidates are those whose seizures are only coming from one spot (such is in his case the tumor).
This is the best case scenario because it is very likely to get rid of all the seizures because they know which piece of tissue to remove and thus eliminate the problem. In Quinn’s case the doctors believe that his Grand Mals are a result of the Complex Partial Seizures, which is another encouraging thing because curing one will cure both types in one! Here he is with head bandaged like turbin. Beneath that is a mass of wires which thread into bolts in his head, concentrated on the left side of his head where the lesion is located.
Apparently the D-Net is pretty much the same thing as a hemangioma like Quinn had in his trachea as a baby, and I have on my spine (according to my spinal scan results). This excess tissue with excess vasculature can be genetic and usually is, despite Dr. H’s poo-pooing of the impact genetics might play in some of these medical conditions. It’s close to 2:30 PM and still no word about when the mapping will be taking place. We could hear something on the spur of the moment. Fingers crossed that this next part goes smoothly and that he can move on to have the surgery on Wednesday or Thursday.
A Heavy Truth; Don’t Want To Be Here
Where do I go from here? I honestly don’t know. Over the past few weeks there has been an inner struggle between gravity and momentum, and unfortunately gravity seems to be winning the fight. Hope seems to be fading as one barrier after another delays any forward movement and despite my best efforts I am losing more of my abilities. I decided I would attempt some new jewelry techniques that I thought would be easier for my fine motor functions, but now it seems as if something is going on cognitively as well as I am failing to understand how to translate what I see someone else doing on video into doing it myself, but after about 5 hours I found myself unable to even complete the first row of kumihimo beaded stitches. Sweating profusely from the energy used just to begin this task had me overheating like an old car in the dead of summer. Everything I attempt to do just seems inordinately hard and I feel as though I have to do these things but can’t no matter how much I have to. That is a terrible double-bind to be in and a scary place to find onesself and for the most part people don’t understand. I’m abundantly aware that sufficient supports aren’t in place and I’m floundering to stay afloat but sinking nonetheless.
I still don’t have any word of the referral to Vanderbilt, and obtaining the right specialists to put all the pieces together and help come up with a viable treatment plan seems to be a million miles away. I guess if you have some unusual condition(s) you really need to have lots of money because getting to the bottom of it requires travel and seeing the small handfull of doctors who really care if you get or feel any better (and often those don’t accept insurance). But then again, it seems they couldn’t care that much if they don’t accept insurance. Medicine has become more about business than helping others and that’s probably the crux of the problem and why the long lines of patients waiting for something to turn around in a positive direction leaving trails of broken dreams dashed upon the rocks.
The sheer logistics alone are prohibitive of getting the care I need for my various medical conditions and on top of that why would these new doctors care if I get anywhere in my treatment or not? They don’t know me nor do they have any attachment to me, nor I to them. The whole process is awkward and disjointed and it’s frankly not working.
I’m up against Mount Everest here and it just seems insurmountable for one woman alone to tackle. I’m seriously running out of steam and I ask how in the hell is any of this in my best interest? I’m no longer at Emory and have been hoping against hope that “when one door closes another door opens” but I just don’t see it happening. As time goes on I just feel I don’t want to be here. It’s not that I want to kill myself, but more a matter of feeling as though I’m ready to go now, that my time here is over, that my body no longer is of any benefit to myself or to others and I’m not happy on this earth any longer.
As much as I wanted to write something inspiring I can’t seem to think of anything and besides it wouldn’t be the truth at this point. It’s become increasingly hard to keep bloggong so in order not to stop I’m just going ahead and writing what comes out without censoring it.
Right now it would be entirely OK with me if I didn’t wake up tomorrow. Tomorrow, and tomorrow, and tomorrow….That’s the whole problem when you really think about it. It begins to seem as though tomorrow never comes.
Tomorrow my son goes in to have a procedure to have internal electrodes implanted in his brain to obtain more precise monitoring in preparation for surgery. Although this is encouraging, I had hoped that by the time he was at this stage that I’d have seen a number of specialists and been well on my way with my treatment so I could be more help to him. That was the plan. Now I’ll be lucky if I can manage to stay with him a few hours, as my health just isn’t allowing me to be up for long periods.
I woke early this morning with hot and cold spells. I’m trying a new cannabis oil product and at first the dose may have been too much because it was having anesthesia-like side effects although it did cut out the hot and cold spells. I had to reduce it by about half and though I no longer have the anesthesia-like symptoms the hot and cold spells have come back.
It’s not until October that I see the Endocrinologist and maybe she will find out something useful, but the hair-loss is beginning to really get to me. I’ve lost about 60% of my hair volume now. This morning I awoke with an ache in my gut (after waking up about 5 times with sweating and cold spells). This is becoming too much. The daily grind of it is just becoming more than I can tolerate.
Safety for People with Autism and Other Hidden Disabilities
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I missed a week of blogging due to the difficulty I’ve been having with my Dysautonomia and my ASD (Aspergers) and the effects of the trauma from what has happened at Emory. I’ve experienced several full-on meltdowns due to all the stress and the barriers I’m encountering in trying to get my healthcare back on track.
I’ve been having fitful sleep interrupted by nightmares which are clearly due to the bullying I’ve suffered. The theme is always some sort of sabotage. In the nightmares I’m trying to achieve some goal and somebody comes along and destroys whatever I’m doing and I end up in some sort of danger as a result.
In one such bad dream I had lit a match in order to relight the pilot light on a stove and someone came up behind me and knocked the match out of my hand.
It fell from my hand and behind a dresser. I tried pushing the dresser aside but it was too heavy. Meanwhile the room quickly burst into flames as the fire spread from the carpet to the drapes and soon everything was engulfed. I then found that I couldn’t move to escape it no matter what I did. Just as I was about to be burned alive I woke up in a panic. It took quite awhile before I could fully come out of it and realize it wasn’t really happening.
In another dream I was getting ready to mail a very important letter and I was in some sort of cabin in the wilderness that was at the edge of a steep canyon. In order to mail the letter I had to climb down somehow on the edge. There was a crack in the wall handmade from plywood overlooking the drop below and the letter got stuck in that crevice. I tried to pull it out and was relieved when I could do it, but as soon as I did, along came somebody from behind me who swiftly pulled it from my grasp and shoved it through the crack in the wooden wall. The letter fell and was gone hundreds of feet below, never to be retrieved again.
Alot of times the sabouteur comes from behind me and I don’t see their face. I can’t tell if it’s a man or a woman because they never say anything and I wake up before I can turn around and look.
In addition to the element of danger in these dreams there is alot of uncertainty.
All this got me thinking about just how crucial it is to build a plan for safety. People with Autism and other hidden or misunderstood conditions are especially vulnerable to abuse and neglect in a number of settings; for instance, police officers often mistake people with epilepsy for being publicly intoxicated,
and many people with such conditions as Autism, Dystonia, and Dysautonomia as well as other poorly publicised conditions are mistreated in healthcare settings just as I was.
This is something that is not spoken about nearly enough in the news or in other public forums but doing so may very well save lives.
Here are some things you can do to help prevent falling victim to those who might abuse, neglect, or exploit you thinking you’re an easy target because you’re in a wheelchair, you’re frail, have communication or cognitive difficulties, or have other disadvantages which may leave you in a compromising position.
1) Wear a medical alert bracelet;
Try to get as much pertinent information on it as possible that people would need to know in an emergency and/or if you are misinterpreted in the workplace, school, by medical personnel, or law enforcement, or in any other public place.
If you can, list a contact person you know who is willing to be contacted and can advocate for you to explain your needs. Nowadays there are many types of bracelets on the market that you can buy. Some of them are even nice looking! See some medical alert bracelets on Etsy .
2) Carry a medical alert card at all times;
You may be able to fit even more information on the card than you can the bracelet but you should try to have both since somebody may not think yo look in your wallet if you are unable to tell them to do so. This organization came up with some Autism Alert Cards you can customize. This company located in the UK sells bracelets that include cards with them.
3) Carry an official diagnosis document at all times;
this can be any official letter you have which proves your diagnosis (if you have this documentation). If not, you should speak with someone about obtaining one. This can be a testing report, a letter from a doctor or therapist written to whom it may concern, or if neither are available, something from your medical record with your official diagnosis on it.
Ideally you should have something not only listing your diagnosis but specifying what your limitations and special needs are, any medications or treatments which need to be given, etc. If you have a supportive doctor or other medical professional, his/her name and contact number should be on this paperwork if at all possible.
4) Bring a buddy with you to the hospital;
If you have some advance notice that you’re going to the ER or checking into the hospital on direct-admission try to arrange for somebody to come with you.
It should be someone whom you have spoken with in advance about your needs and limitations; preferably somebody assertive who will not have a problem speaking up to authority figures in your defense while still remaining calm and rational.
This person can keep an eye out for you and can also act as a witness in case anything goes wrong. If they have a cellphone they can also videotape if somebody is mistreating you.
If you don’t have anyone in your life to fulfill that role be sure to contact one or two people before leaving and let them know which hospital you’re going to (and if possible give them the phone number so they can call and check on you). Bring your laptop or some other mobile device that has internet access. That way you can give them updates.
One of the things I learned as a patient advocate years ago is that people who have someone actively checking on them are less likely to be abused or neglected because it’s more difficult for perpetrators to get away with it and the likelihood is that they’ll get caught. This is often enough of a deterrant and they won’t even attempt it. (I’m pretty sure that if I had had somebody willing to go with me or meet me at the hospital in December that my incident wouldn’t have ever happened).
Taking these steps can’t guarantee you will never be victimized but they can make it much less likely.
If you do find yourself in a situation in which you’re abused, neglected, or exploited, be sure to document as much as you can about exactly what happened. Take down names, times, dates, what they did that they shouldn’t have, and/or what they didn’t do that they should have, etc.
Then I would recommend contacting The Dept. of Health and Human Services and filing an Office of Civil Rights Complaint.
Filing with State regulatory agencies in my experience is often a complete waste of time, as usually doctors are automatically believed carte blanche by such decision-making bodies and therefore it is not a level playing field. Usually such investigations consist of review of the records to see if anything “not meeting the standard of care” is documented (and of course doctors aren’t going to rat on themselves or each other in a patient’s record), they write up the perpetrator’s side of the story, and send it to the patient.
In some of the more progressive states filing a complaint with the state medical licensing board might yield results if the malfeasance was committed by a doctor, but often doctors are reluctant to discipline their peers (the medical boards utilize doctors to investigate the claims and determine the outcome, if any). Generally they have the option of making any action taken either public or private. If they take private action they might keep that secret and not even let you know they are doing anything about it at all.
How You Can Help Now;
You can also send letters now to HHS asking that they make Institutional Bullying of medical patients/people with disabilities an added Civil Rights violation in the same way it’s interpreted in statutes for Institutional Racism. Please also ask that clear-cut consequences be specified in any new legislation and/or amendments.
Given that this is an election year this is the perfect time for you to send your letters! The more of us who write and make our voices heard the sooner we can make this type of abuse a thing of the past and prevent others from having to endure these atrocities in the future.
US Dept. of Health & Human Services
Attn: Secretary Sylvia Burwell
200 Independence Ave., S.W.
Washington, D.C 20201
Phone (Toll Free); 1 (877) 696-6775
Go here to file your official grievance if you have been discriminated against because of your condition and/or not given reasonable accommodations for your special needs. You can file by snail mail, email, fax, or via their online webform. (All communication options and requirements are explained on their website on the paged linked-to above).
Although this is covered under current law there are still many people who unfairly make allowances for it when this happens to people who are ill and/or disabled in a way they would not with other minority groups. There should be a zero tolerance policy for this type of discrimination and a recognition by all that this is every bit as heinous (in many instances even more so because this population is at a greater disadvantage than most other minority groups)
And now for a good protest song;
This Land Is Our Land
Unfair Ultimatums; Which Would You Like To Keep? Your Arm or Your Leg?
If a doctor forced you to decide whether to keep your arm or your leg which would you choose? This is a ridiculous scenario, but figuritively speaking, chronically ill patients are expected to do that on a regular basis, sacrificing one thing they need in order to have another they need just as much.
I found this out first-hand when I began receiving services through SOURCE, a Medicaid waiver program that provides personal assistant services to people with disabilities who need help at home. When I first began with them I was told that I had to utilize a primary care doctor off a list they provided but that I could also keep any other doctors I wanted to keep.
The primary care doctor I had chosen when Emory sent me the certified letter kicking me out was somebody affiliated with Piedmont Hospital and although I wasn’t sure whether she was going to be able to help me get the necessary referrals to out of town specialists a staff person from her office called last week to say that she was in fact working on a referral to Vanderbilt and just to give her some time to get it facilitated.
She was unable (because Piedmont doesn’t accept direct Medicaid payment) and unwilling (because she didn’t want to be inundated with Medicaid Patient referrals) to sign up to get on the SOURCE list but I had been told by the SOURCE caseworker that I could have one doctor through their list and also keep her if I chose.
Today I went to the appointment with the SOURCE doctor I’d picked out (whom I will call Dr. HA). Dr. HA had wavy brown shoulder-length hair and was a little taller than I was; maybe about 5 ft 4 or 5.5 and of medium build.
She seemed nice but I could see fairly quickly that there were going to be numerous problems.
First, she wanted the records from Emory. This was a non-starter right off the bat and it seemed there was no way to make it out of this minefield unscathed. She told me that she had privileges at Emory Midtown (where Dr. H, my Pulmonologist works) as well as at Piedmont, and (strike 2) that “Emory’s good.” Uhhhh…Not so much, I thought.
I told her I’d been going there for 13 years and that it used to be but this past year something has changed, but she wouldn’t leave it at that. This turned into a game of 20 questions. She wanted to know what the political stuff was and on, and on. I reluctantly told her that there are numerous inaccuracies in my medical record and that two very important consults out of town had been sabotaged at the last minute, so I was not comfortable signing a blanket release for that medical record to any doctor, but that I would give her the objective information from test results, vital signs, etc.
“I won’t judge” she said Dr. HA in her thick Russian accent. “I can just go in and pull it since I am affilliated with them.” She then said she would also like the information on my chronically elevated liver enzymes.
“No, the clinical notes are awful. I’d rather you not. I would rather just close the book on it and not re-open any of that. I don’t want this stuff passed on from doctor to doctor.”
“If you don’t want me to look I won’t look” continued Dr. HA.
I’d heard this song and dance before and no longer trusted it. Signing such a release would have given her the legal right to access the electronic record as a whole and it was too big a risk. “I can give you the objective stuff. I have some of it with me and the data on my liver enzymes I can get for you if you need those”, I responded.
This doctor utilizes students from the Carribean and often 3 or 4 heads are better than one, and could ultimately be helpful but these were not residents but medical students so they were not as far along in their training as I’d originally thought. They all looked of West Indian descent with dark straight hair and dark skin.
One woman typed my medical history while another checked my vital signs and… checked my reflexes (ick). This more irritated me than scared me this time. I resisted the urge to throw that hammer across the room, LOL. As usual I had spasticity/hyperreflexia in my legs. She did not check the reflexes in my arms; just strength.
When it came up as to whether I wanted her to be my primary care doctor I explained that yes, for Source, and that Dr. P was already working on referring me to Vanderbilt and that I didn’t want to further delay that. This was a sticking point with her and she also seemed overwhelmed with the referrals I needed. She asked why Emory couldn’t just have me seen in their Movement Disorder clinic at which point I had to further explain that the Chief Medical Officer had kicked me out and then she wanted to know why, yada, yada…and I said that besides, I had never been referred there even before all that happened and that that was a big part of my problem; that the proper referrals to specialty clinics had not been acted upon when they should have been and with all the politicization of my case it would not really be in my best interest to go to their Movement Disorder clinic now even if I had not been barred from going as it is doubtful that I would get a fair and unbiased evaluation.
I went on to explain that I have rescheduled the one at UF Movement Disorder Clinic for January but that I need a doctor to sign off on the necessary forms for my oxygen concentrator to be carried on the plane and the one for the non-profit to cover my travel expenses.
“Really you need to have a neurologist to do all those things” said Dr. HA. “I feel it would be better for me to have back-up in case there ever was a neurological problem I don’t know how to handle.”
“I had two; one in Sleep Medicine who treated my Myoclonus and one in General Neurology” (giving her their names), “but Administration came in and forbid them to keep seeing me. I trusted them because they were going to support me through this process, but I had a really bad experience with a male neurologist and after that I don’t know if I can go to another one here in Atlanta. I looked and there was nobody of the ones available that I was that impressed with, besides, that male neurologist in the Emergency room was out-and-out abusive. I just really am hesitant after that.”
“Did you report it?” she asked?
“Well I know one at Piedmont who’s good…Dr. _____” (I will call this one Dr. HAA to avoid a mix-up as there are lots of these doctors who’s names start with H), I’d heard of him and can’t remember what his reviews said, but still…he’s a male neurologist. The thought of going through this embarrassing explanation as to what happened at Emory with yet one more Atlanta doctor, much less a male neurologist, was more than I could stand.
The primary care doctor, Dr. HA had me describe my Myoclonus, then looked up something on her phone. “Tramadol could lower your seizure threshold”, she said glancing over at me.
“I know, but the neurologists I was seeing didn’t think my Myoclonus was seizure-related, they thought it was due to the underlying disease-process, so I don’t think that is an issue. Besides, I’d already tested going off it for a few weeks and it made no difference in my Myoclonus at all. It’s much better on the 1000 Mgs of Keppra than it used to be before I was on it. I used to be up all night with it until 7 AM.”
The two students stared ahead making slightly uncomfortable faces at her apparent lack of clinical knowledge regarding the several different etiologies of Myoclonus. I noted it as well.
“Dr. P is in the process of setting up the referral to Vanderbilt. I’ve waited 7 months for treatment already and I really don’t want to delay it any longer. The neurologist may or may not even do that.”
“Let me speak with your caseworker” replied Dr. HA. “I don’t know why she told you to keep both of us. That doesn’t sound quite right for me to be for Source and she wouldn’t sign up but she will get paid to see you too when I went through the paperwork to get on their list.”
I handed her the caseworker’s business card and she dialed the number. “Ms. N? This is Dr. HA”, she introduced herself. “Yes, I’m here with Ms. Carlington in the office. She has told me that she was told she could see a doctor through SOURCE and also this one that she’s already established with who is not with SOURCE. I don’t think that’s right that she sees her and also me. Why did you tell her that? I don’t really appreciate it.”
Both me and the two female students in the room looked at one another awkwardly.
She put the caseworker on speaker. “I just figured she could do everything dealing with the neurological referrals” said the caseworker, “since she was already working on the referral. We really just need a doctor on record and since she was unable to get on the list I told the client to just pick one on the list for our purposes in addition.” And then speaking to me “Ms. Carlington, I guess you’ll just have to take this one on faith so that you don’t lose the home help. I don’t know what else to tell you if she won’t do it along with Dr. P.”
My heart sank “I’m beginning to think this is becoming more trouble than it’s worth. She wants me to see a new neurologist for the referral rather than her to do it if I switch to her. I don’t know any neurologist I trust and who knows if the new one would even give the referral. This could go on forever and I might never get to Vanderbilt at this rate.”I told her I just didn’t know what to do at this point, as I have had to change way too many doctors in a short period of time.
Dr. HA thanked her for speaking with her. I started to ask the caseworker if she’d be in the office when I got home so I could call her later, but she’d already gotten off the phone.
Dr. HA wrote me a refill of my Tradadol (but just 1 month’s worth) and told me that she’d give me a month to decide what I wanted to do, that she wouldn’t bother making copies of my records I’d brought with me until she knew I was coming back, then I followed her and the students back out into the hallway.
I need the referral to Vanderbilt but I also need the personal assistant. It’s not an either or situation. I need both equally. This is a real double-bind, but it seems if I get rid of Dr. P she won’t be too thrilled after she’s gone to the trouble of working on the referral to Vanderbilt, and she’s a sure thing and will save me time if she does it.
This newer primary care doctor is a question mark at best, and whether a new neurologist she recommends will follow through with the referral (if I can even get up the guts to see a local neurologist) is a total crapshoot since she doesn’t want to do it herself. It also makes me uneasy that she’s invloved with Emory on any level. Somehow in all these people’s self-interest I, the patient got left behind.
So many don’t understand the magnitude of my loss. I had two good female neurologists and they were ripped away from me when I needed them most. This is killing me. I need time to grieve. All this not being seen or heard and being required to fit into other people’s boxes I don’t fit just makes my heart ache and all I want to do is withdraw from everyone. Step out on faith? I can’t; not again for the umpteenth time. I need to eat what I like, keep to my routines, pace myself and not make too many changes too quickly. For me that’s a necessity; not a luxury.
Why Dysautonomia is Such A Hot Potato Diagnosis
After having spoken with many other patients I’ve noticed a commen theme in that nobody except a handful of experts in the medical community really wants to acknowledge, much less treat patients with some sort of Dysautonomia. I keep wondering … Continue reading
Medical Record Inaccuracies and Doctors’ Personal Agendas
Good charting is a skill that can be learned, but when the basic ethical principles involved are not adhered to it can actually do patients more harmed than good. As they say “The pen is mightier than the sword” and that is so true!
Charting on a patient carries power, but with that comes responsibility to carry out this activity with grace and selflessness, never forgetting that you are commenting on aspects of that person’s life and this very act can influence how the patient is treated by others who read it. One must resist the urge to “think out loud” in a patient’s medical record where such conjecture might not be in the patient’s best interest and thus hinder their care.
Doctors, if you are using a patient’s medical record to further your personal agenda or hypothesis in conflict with the patient (or with another doctor indirectly) you are not benefitting your patient, so please stop it.
The medical record is not your personal journal, it is not the place to grandstand, to take shots at the patient, to show your ego, nor is it the place to take out your frustrations from home.
Given the fact that you assume the patient will not likely read what you’ve written it might be tempting to fill the chart with your own bullish rehetoric, but this says more about you than it does about the patient and therefore it does not belong there.
When I worked officially as a patient advocate under the federal Protection and Advocacy system devised in 1986 by legislation enacted by Congress I attended extensive training sessions on various aspects of the job and I learned alot about what a proper chart is supposed to look like.
We used to have an independent contractor evaluate all advocates’ charts on patients nationwide, and my charting was actually deemed the best in the country of all Protection and Advocacy systems.
There are certain principles that exemplify skillful charting on a patient.
1) Charting must be accurate and precise
2) It must be relevant
3) It must be written to benefit the patient
Accuracy and Precision
This is pretty self-explanatory but there is often confusion as to how to interpret what is “accurate” and what is “precise.”
Let me start by saying that you are only resonsible for charting what you know to be a fact. This does not mean that what you don’t know is not a fact; one to be disputed in the chart. For example; upon receiving my doctors’ notes last week, I discovered that my pulmonologist had written some things attempting to question my diagnosis of Sarcoidosis. Why he would do this when Emory has already confirmed the diagnosis seems suspect in and of itself and smacks of personal agenda.
My diagnosis was obtained by objective tests 13 years ago.
I had a Gallium scan and other test results such as labs which showed idiosycratic markers for the disease. That is a fact.
There is no disputing that, yet the doctor did. It is true that a follow-up gallium scan this year indicated it was probably not actively in flair now, but that does not invalidate the diagnosis itself. It only means it’s not in flair at this point in time and indicates that my current symptoms are coming from something else. It has not magically disappeared as it’s a chronic and incurable disease. It’s possible that this pulmonologist may be using outdated understanding of the disease (long ago it was believed to spontaneously “go away”), but this has been disproven with the advent of more understanding of the physiological workings of the disease.
Sarcoidisis was once thought only to be a lung disease (hence why it’s often treated by Pulmonologists), but now it is known to be a multi-system disease that can and does affect every part of the human body. It was once thought to be only characteristed by non-caseating granulomas, but has since been shown to be much more complex than that and its inflammation manifests in many more ways than once believed.
It is now undrstood by the top experts in the field to be associated and most likely caused by intracellular pathogens. It is not merely an autoimmune response after an offending pathogen has been cleared from the body, but instead the resulting inflammation is a response of the body detecting a pathogen it just can’t locate and effectively kill.
My Pulmonologist, Dr. H perpetuated further inaccuracies when he charted that my Dysautonomia was “self-diagnosed” and and in his insistance on continuing this assertion in the medical record pretty much accused me of lying given the fact that I’ve told him that this came from a doctor who treated me with IV Saline at Piedmont hospital; not from me.
It is a fact that I knew nothing about Saline as a treatment modality for Dysautonomia before the doctor ar Piedmont did a blinded experiment (unknown to me at the time) by putting me on Saline infusion, then taking me off for 24 hours or so to see what happened symptom-wise.
The doctor who tried this did not explain any of this until after he trialed this method on me. This prevents any bias I could have had and thus rules out placebo effect. The fact that I responded positively when treatment was given and negatively when it was withdrawn indicates that reduced blood volume is a factor in my Dysautonomia.
Dr. H glossed over this in his charting, disregarding what I’d told him. He made no attempt and showed no interest in verifying what I had told him, merely assuming it wasn’t true. Why? The answer to that lies in an area of his mind only Dr. H can answer, but one thing is clear; that the subtext in his charting conveys that he does not believe me.
How does this serve the patient? Answer: it doesn’t. It only serves to undermine the patient. He went on to state in the record that I was “suspicious” and “defensive at having my opinion challenged.” Hmmm. Sounds like projection.
During our last appointment he got very huffy and puffy that I wouldn’t just accept as fact his theory that my problem was psychiatric in nature and wanted to end the appointment because I wasn’t buying it. He said ” Do you really think Neurlogy is helping you?” Then was very offended when I told him I wanted to give Dr. V a chance, and his statement was “OK, I’ll take a back seat to Neurology” as he rolled his eyes and heaved a huge sigh with matching dramatic shoulders shrugged up, then down.
His charting reflects that he was agreeing to that course of action, yet he contradicts that with a lengthy monologue which tries a bit too hard to invalidate my seeking expert assessment out of state (which Neurology supports my obtaining).
He says that going for these assessments is “premature” yet he suggests I go to a psychiatrist” (which should be the last resort after everything else is ruled out, and it hasn’t been). There are alot more tests that have not yet been performed before throwing me in that dustbin. For all his talk about lack of “proof” and “evidence” he has not one shred of proof that this condition is in any way psychological. Besides, psychiatrists are generally in the business of prescribing medication (indicating a physiological cause for which medication is assumed to have a beneficial effect on a patient).
So which is it, Dr. H? Let’s stick to the facts.Let’s be accurate and precise rather than subjective and vague.
1) I have dysregulated blood pressure,
2) chronic constipation,
3) near syncopal episodes,
4) Muscle weakness and spasticity, and severe fatigue
5) Etreme thirst and need ice water by the bed at all times
6) GI upset; nausea, lower GI spasticity, inability to eat solid food for weeks at a time
7) I’ve been hospitalized and treated for such problems, and said treatment improved the symptoms without my knowledge of Dysautonomia at the time (I did not read up on it until after it worked).
8) Dysregulated sleep/wake cycle (evidenced by 3 sleep studies that he ordered and interpreted)
9) I have Central Apnea and Biot’s Respiration; both indicative of a “central process”. Patients don’t develop these for no reason. Idiopathic does not equal psychological or psychiatric. It just means the cause has not been found yet and it requires further investigation.
All the wild speculation about my condition possibly being in my head is a distraction from the task at hand and has derailed any unbiased investigation. Dr. H went way off-course with only the lack of an explanation for all my symptoms as his reasoning for wanting to send me to a psychiatrist. I don’t see how this is at all relevant, and seeing as he figured I wouldn’t see what he’d written, the intent could only be as a coded alert to other doctors who might be looking at my records to view me as less than credible. None of my sleep problems were addressed in that last appointment with him although I’d told him that the sleep attacks had returned. He was only interested in invalidating me along with all my symptoms and even my established diagnoses, as though in one fell swoop he’d completely come to revile my very core essence and viewed me as suddenly unworthy of even the most basic dignity afforded to patients because they are human beings who deserve compassion and empathy.
It was this “othering” that is unmistakably present in the room, that visceral feeling that makes the hair on the back of your neck stand up when you encounter it.
Written To Benefit The Patient
Charting on a patient must be written with the intent to do something useful for the patient.
What do you intend to accomplish?
What is your game plan?
How are you going to go about helping the patient?
These interventions should be developed in partnership with the patient, as the patient is the one who must be happy or at least content with their healthcare outcome since the patient is the one who must live inside their own body.
You, the doctor can go home and forget about the patients’ pain, fatigue, GI symptoms, movement symptoms, syncope, or other medical problems. The patient, however does not have that luxury.
Dr. H. stated in my record that he was going to go along with Neurology, but Neurology (Dr. V. to be specific) had changed course and was now on my side and no longer doubting that I have Dysautonomia. Dr. V had a very succinct plan which partnered with me to obtain the full assessment for my Dysautonomia, laid out in bullet points.
She did put the Aspergers assessment on my chart as a goal (which although I asked her at the time to keep this off the record she did not), but be that as it may, this was neuropsych; not psych as Dr. H was so blithely wanting to push.
Did he read her notes? I wonder. Perhaps he assumed that she would go in the direction he was heading and when she didn’t he lashed out using his charting as a weapon to defend his wounded ego.
Since I believe they can edit records later I have no way of knowing when Dr. H entered the voluminous material pushing the psych agenda. It may have been soon after I left his office or it may have been later once he’d seen that Dr. V. was not thinking that my problem was in my head.
Dr. V. commented on June 3rd at my last appointment that she had noticed my blood pressure had been running low. Although she did not know the underlying cause of the Dysautonomia she did not dispute it in any way, and was welcoming my going to these consults out of town, admitting that Emory does not have the facilities nor expertise to do full autonomic testing here.
Unlike Dr. H., her notes this time were constructive, laying out a plan that I was in agreement with, a list of numbered goals, (and sticking to the overall goal which was to find the underlying cause of my Dysautonomia and ultimately treating it). That is more like it.
To this day I believe that Dr. V. in her heart is sorry for how she misjudged me on our first meeting and truly wanted to make up for the scathing rush-to-judgement that is forever branded on my medical record.
I don’t know why she did not edit it when she returned from maternity leave, but maybe the reason was to show that sometimes doctors can be wrong and that they can also admit that they were wrong and can change later. It takes a bigger man or woman to admit when you made a bad judgment call and correct it than to stick to your story even once you realize your first impression was incorrect.
It did hurt to know that what she’d written the first time was the straw that broke the camel’s back and resulted in both my GP and Pulmonologist’s diverging from me and the impetus for the dissolution of those doctor/patient relationships, but she is not solely responsible. They have a part in it too, and it’s disturbing that either of them would so quickly dash my credibility on the rocks because of some other doctor’s opinion who had just met me. Those two had known me as a credible person; one for about 1 year, and the other for 13 years.
They should have known not to be swayed from my side based on some opinion espoused by a doctor that had no chance to know me as they had and had only a limited snapshot of the circumstances under which I came to the clinic.
In the final analysis Emory’s Administration didn’t allow things to work themselves out and to set the record straight once more data could be obtained. They were too invested in making sure it never would be worked out, too invested in keeping the record toxic and defamatory so that I could not obtain care in or out of Emory.
In their fervor to interfere between doctor and patient we may never know if all this might have ultimately been put in the past and whether the relationships that still existed would have become stronger once more facts were elicidated upon further testing.
Perhaps this could have been a model, a learning experience for other doctors to see how things can evolve over time and how things can be put back together after such a fire-storm of controversy sets the record on fire.
Maybe behind the scenes Administration thought such a mess had been made by their various employees that it was irreparable, but the most unfortunate thing of all was that by the time they started blocking people from working with me things had died down considerably, those who had openly turned against me were gone, and when Dr. V. returned it looked as though things might have a happy ending afterall.
Just as my care made a constructive turn, I encountered a brick wall; the corporation added insult to injury, swooped in, and never allowed the answers to play out.