Ever feel like you’re simply living in the wrong state to access the treatment you need for your condition? You may be right. There are lots of factors that enter into the equation which determine access to appropriate care; insurance … Continue reading
I haven’t written much here lately about how things have been going as far as getting to Vanderbilt Autonomic Clinic, because I was under the impression that it was just a matter of time and having my current GP fill … Continue reading
A well-known and respected Olympic doctor, Larry Nassar, was recently charged and convicted of numerous counts of sexual assault against his patients, mostly teenaged girls at the time of the incidents, some younger and some who are now college-age. It … Continue reading
For my second post for #Blogmas 2017 I came across a story that every mother and father should read! A mother, Mandy Drew in Alberta Canada was told her daughter, Cheyenne was hopelessly ill and that she should “take her home and create memories.” Doctors threw up their hands and gave up on the little girl after she continued to worsen in traditional chemotherapy. Tumors were wrapped around vital parts inside her body, making the situation that much more complicated.
Her mother, faced with no options from her daughters treating professionals considered medical cannabis given the fact that at this point there was really nothing to lose. If she’d done nothing death was a 100% certainty! Although a little skeptical at the outset, Cheyenne’s mother decided to give it a try, but she had no idea that her daughter would be medically blacklisted nor the level of hostility she would receive from the medical establishment. One doctor who during a phone call asked Mandy what she was doing in her alternative treatment literally hung up on her when the mother told her she was treating her with cannabis oil.
Despite the rejection and anger directed at her for this treatment choice, the Alberta mother reported that her daughter began responding with just 1 gram per day. She began to notice her apetite return, her mobility improve, and eventually it was discovered that her tumors were calcifying (a sign of apoptosis, the scheduled death of the cancer cells)! Now at age 4 and having already beaten the odds, Cheyenne functions like any other 4 year old, is symptom-free, and doesn’t even have any awareness of her diagnosis.
Her mother appeared on this radio show which was posted to Youtube on January 24, 2007 to speak about her experience. The host also gives some very interesting information from research suggesting that many illnesses may be caused by a deficiency in the body’s own cannabinoid system. Apparently there is a lab in the US offering a test to see whether your illness(es) are due to this deficiency or dysregulation. Watch the video for yourself to hear this woman and her daughter’s amazing story!
Yes, medical blacklisting happens to children too, even dying children, and it’s a shame that doctors and the corporations they work for are so arrogant that they would turn their back on someone like this when they have nothing better to offer. Corporate healthcare has in effect taken the patient out of the equation, when in fact the patient (or parent when the patient is a minor) should have the last word when it comes to treatment decisions, and more often than not, the patient is correct about what is likely to work.
Whatever a doctors opinion on cannabis or any other treatment for that matter, he or she should keep an open mind and support the patient’s treatment decision. Most patients who have decided on a particular treatment they want to pursue do so after alot of careful reading, research, and thought. Therefore they should not be treated as crackpots or loose cannons when approaching their doctors.
These patients are already suffering and it only increases their suffering for a doctor to work at cross-purposes with a patient that he has stopped or refused to start treatment on. It is not only heartless, but unethical for a patient’s treating professionals to ostracise a patient for doing what they have to do to save their life or the life of a relative who is in their charge. It may be OK with a doctor to throw in the towel, but it shouldn’t be, especially when there are other things to try which he/she either have not looked into or flatly refuses to consider.
A doctor or a healthcare system should never be a gate-keeper between a patient and the possibility of improvement, preservation of or quality-of-life. To do so is in clear violation of the Hippocratic Oath. Healthcare professionals must keep in mind at all times that they are in this field to help others. What they do in the course of any given day should not be about their own needs and biases, but should be undertaken for the sole benefit of the patient. Sometimes that means being willing to put your own opinions aside and giving the patient the means to reach further without impedence.
The practice of medicine should be a selfless act, not one whose primary motivation is to save face. In this day and age physicians are not expected to know everything, (and get a clue guys, the cat’s out of the bag! Patients are well aware that there is no way that a doctor seeing patients all day long back to back has the time to read up on all the latest research. Many patients now know how to read medical journal articles and have to become experts in their own conditions in order to ensure they get the best treatment available, so it’s high time that was acknowledged.
And medical professionals, The crackpot defense no longer holds water anymore. Instead of shutting patients out and shutting them down when they engage you in discussion about a certain treatment, or diagnostic possibility, instead of writing backhanded and snarky comments in a chart, why not treat them like the respected partner that they are and approach this undertaking as a challenge to be solved rather than a threat to your authority.
It’s not personal. It’s not about you. It’s about their best health, and their life.
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
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.
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.
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.
Attribution given; <a href=”http://www.freepik.com/free-photos-vectors/background”>Background vector designed by Olga_spb – Freepik.com</a>
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
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.