Treatment has hit another snag and it’s precisely because of those medical records from Emory; both what they say that is false and what they don’t say that is true. The worst of both worlds. What good are medical records anyway? Isn’t the whole point to help the patient? And if they actually sabotage a patient and prevent them from receiving the care they need then what?
I wonder how long I can go without treatment before this again becomes an emergency. I am so overheated there isn’t enough ice water in the world to relieve it. I can’t seem to stay cool enough and I sweat around the hairline and in other specific areas of the body. It’s strange because it’s not my entire body that sweats, just certain parts of it such as lower back and my face and scalp get spontaneously oily. I change positions but that only helps temporarily. Holding my glass in my hand helps to a certain extent but it also melts my ice faster. Although I have my wheelchair next to the bed even getting in it to go to the kitchen is exhausting especially given the fact that I still have no neck support and am sitting upright. Me and gravity don’t exactly get along.
The weekend was absolute hell with cardiac events waking me up two nights in a row, several times each night with my heart pausing and then straining to beat slowly and haltingly. The only way to prevent it is to stay awake in the wee hours of the morning and even that doesn’t always keep it from happening. It often flairs really badly at around 3:00 AM – 6:00 AM.
My gastrointestinal symptoms have been quite erratic lately and I have noticed loose sticky stool yesterday and more urinary retention. Oddly when I peed it was as though I really wasn’t feeling it coming out. It wasn’t numbness in the usual sense, just lack of sensation or greatly reduced so I was unaware of just how much was actually in there. I had to consciously push with my abdomen to get it out but it was quite alot.
Then later I started noticing some fecal odor and leakage from the back end and have had to change underwear on a number of occasions. It’s not diarrhea but some sort of brownish greenish clear liquid. Sometimes I see it when I wipe myself on the toilet paper too.
I’ve been waking up each morning with headaches that are so debilitating I can’t move sometimes for an hour before the pain lets up enough even to sit up and get more ice water with which to take my pain medication.
My eyes continue to be dry and the skin on my arms is taking on a distinctly crepe look. I must still be dehydrated. The water I’m drinking and salt intake just aren’t processing through the GI tract.
Momentum is building within the chronic illness community and as the numbers reach epidemic proportions we are rapidly becoming the majority and becoming a formidable voting block as well.
As patients we are taking our health into our own hands and insisting upon the respect and dignity we deserve in forging our own path to wellness…and on our terms. As we become more and more educated the traditional medical hierarchy is increasingly proving to be outdated and non-applicable given the current state of affairs.
This is our life and our body that we live with 24/7. The doctor who treats or fails to treat can go home and turn his mind to other things, whereas whatever treatment decisions are made will follow us, the patients, when we return home. These decisions and the orders or lack thereof surrounding them often determine our level of relief or suffering. Our doctors, (while well-meaning in the best case scenario) cannot fully ever grasp what we deal with on a day-to-day-basis, so in fairness they need to acknowledge and give reverence to the truth that nobody can know the workings of our selves better than we ourselves.
There are many things no medical textbook can teach you.
In the real world organs in the body don’t always work that way, and to insist on believing they must is to deny the patients’ very humanity. One cannot approach the human body the way a mechanic approaches a car. We are much more complex than that. Human beings are both consistent and inconsistent. That is what makes us human. Unlike machines we feel everything that is done and not done to our bodies and to our minds. This in turn adds to our physiology for better or for worse.
A good and wise doctor understands that he/she must not ever eclipse the patient, but instead be a good facilitator and advocate for that individual and always fulfill a supportive role throughout the course of the patients’ life, not to decree, mandate, or gate-keep, but to pave the way for their patient’s own individualized path to healing to the best of their ability, to remove obstacles and never to create them. The patient, especially the complex chronically ill patient’s life is hard enough. The goal should always be to make it easier.
Ethics demands that the doctor/patient relationship in today’s modern society be one of equals, a partnership toward a common goal, while always remaining mindful that the patient has the final say in the body which the patient alone owns. This philosophy must also extend further than the office of the primary care physician and carry over into all areas where medical professionals exist.
Doctors, healthcare systems, medical schools, conferences, and regulatory decision-making bodies can no longer afford to shut us out, put us off, nor deny us an equal place at the table. We are becoming a force to be reckoned with and a strong source of information not only of help to ourselves and our fellow patients but also to doctors, residency programs, and continuing education programs. It is often we, the patients who dig up the research papers, find the links, and connect the dots our doctors don’t have the time or interest to seek out.
We, the patients notice shifts and changes in our bodies that provide clues the doctor might otherwise completely miss. Without clinical symptom monitoring and record-keeping a doctor often has no way to know even what tests to run or where to start looking. Listening to the patient is probably the most important partof reaching an accurate diagnosis. This is why it’s so much more difficult to treat animals and small children because they can’t tell you what’s wrong.
This is also why perceiving a patient as an unreliable source is so dangerous. They are capable of telling you what’s wrong but if you don’t believe them on a core level you are dismissing and/or throwing out important information you need in order to assess, diagnose, and treat them.
For true equality to happen first doctors and the institutions that train them must acknowledge the need for change.
It is one thing to be ignorant of new knowledge, but quite another to refuse to allow it in and instead stubbornly hold onto one’s ignorance.
“First they ignore you. Then they ridicule you. then they fight you. And then you win.”
This saying has often been attributed to Ghandi but some version of it has been repeated by a number of people in activist movements the first of which is believed to have been Nicholas Klein of the Amalgamated Clothing Workers Union said in 1914.
It is especially fitting now for as I’d suspected the offending parties are in fact reading my blog. I got confirmation of it today in a letter dated March 21st, the envelope of which says “Administration”, and inside top left-hand corner says “Office of Quality & Risk”. Apparently T.Js Supervisor decided to write and tell me to shut up, himself. He says and I quote; “This is a response to the various concerns you have continued to raise to several individuals within the Emory system regarding your medical care and treatment at Emory University Hospital on December 3, 2015. At the outset, I emphasize that we thoroughly investigated your complaints properly considered your requests, and responded in writing to them. I direct you to the response letters from Emory regarding these matters. Further, we have performed additional reviews after learning you were not satisfied with our response.”
Interesting he should say they’d done “additional review” as all I was told by TJ in her nasty, unsolicited and retaliatory phone call was that she’d already finished her “investigation” and that “nobody is going to call you back”, (before talking over me and rudely hanging up). There was no chance to ask any questions or raise further concerns, and it was clear she in no way wanted to accept any more nor to help solve any. That was the last correspondence I had from anyone in that capacity.
I received no letters showing any evidence of further investigation nor were any of the gaps addressed in their investigation that I’d pointed out. Many questions remained unanswered and he never returned phone calls I’d made to him when I got the initial response showing that his subordinate had not done a fair and complete investigation. Then he goes on to say;
” While we remain apologetic that you have been dissatisfied, please know that our conclusions and decisions regarding your aforementioned complaints and requests have not changed since the time of the response letters. Please also understand that you continuing to raise the same complaints and requests to different individuals within the Emory system will not change our conclusions and decisions regarding these matters.”
So in other words he as agent for Emory will not remove the libel from the ER record, amend the record, bar the offenders from accessing my record, nor take any other actions to protect me as a patient, nor take any disciplinary action against those who participated in the abuse and neglect even if the CEO himself were to insist on it. (That was who’d I’d written by the way; the head of the corporation. I did not know at that time there were two; one for the University side and another for the medical side, so I mistakenly wrote the wrong one first and then was directed to the one for the healthcare side).
Then he goes on to say this…”If you have any new or additional complaints or requests regarding any medical care provided to you at Emory at any time, please let us know. As we have done with your complaints and requests up to this time, we will thoroughly investigate the complaints, properly consider the requests, and respond in writing to them. We have assigned Ms. T.J., Manager of Patient and Family Advocacy, as your point of contact regarding your complaints and requests. Ms. J can be reached at (phone number).”
As it will be when pigs fly before I ever enter their ER again, Ms. T.J.s “services” will not be needed. She is not allowed to tamper in other areas and if I catch her doing so it is a further violation.
He goes on to say;
“We do ask that you focus and limit your communication to Ms. J so that we can ensure none of your concerns go unnoticed and so that we can manage your communications with us in an efficient and effective manner that does not detract from our goal to provide quality medical care and services to our other patients and families.
We are aware that you have posted and discussed online at patientsrigtsadvocate.com your complaints and requests regarding your medical care and treatment at Emory. While we respect your right to express yourself, we request that you remove the specific references to Emory and our personnel. We also encourage you to direct your complaints and requests to Ms. J in lieu of posting them on your online blogs.
Moreover, as we have stated in previous correspondence to you, it is our expectation that our patients have positive experiences while under our care, and we deeply regret that we disappointed you. If you truly remain dissatisfied and feel that we at Emory have not appropriately met your expectations, please know that you can always seek out your medical care and treatment elsewhere. We do thank you for reaching out to us to express your concerns and for giving us an opportunity to look into them and to continue respond to you.” He then signs his name, LOL.
OK…Now let me get this straight…
First they neglect and abuse me in their ER, then libel me in my records, then refuse to correct their rights violation, turn my own doctors who I’ve known for years against me, play all sorts of dirty tricks to cover it up and sabotage my treatment at Emory and out and because I write about my experience in my blog he wants me to remove it? Aaaah…Nope, I don’t think so. After a full and complete investigation I find everything to be correct and complete as is.
So sorry you aren’t satisfied.
But hey, if you really did nothing wrong then what are you worried about? I stand on my principles.
One has to wonder why little old me, one patient in the entire Emory system has that much power that he implies to warrant that sort of extreme knee-jerk (sorry for the pun) reaction (just a strong reflex, I guess).
Me thinks maybe there’s something a bit deeper going on which has nothing to do with me and that even I do not know.
Oh, and the best part…I’m starting my treatment very soon! (from someplace else that is taking me seriously despite all the dirty corporate tricks and unprofessional attempts to distract, dispute, and derail me from my goal).
Phrases and affirmations for and about the chronically ill or disabled can be healing or they can be insidiously hurtful. A recent video I watched about society’s shift in perception of the chronically ill got me thinking about just how we got here and provided some insight into those factors that have eroded empathy and created a cynical public perception of those whose illness or disability does not go away in an allotted “socially accepted” period of time. In the video The Slow Death of Compassion for the Chronically Ill a number of sociological factors are discussed which over time have affected how the general public views those who don’t “overcome” their disease or disability.
The media bombards us everyday with messages and stereotypes of people who have overcome and “beaten the odds” while the subtext beneath the surface suggests that those who don’t are somehow weak, not trying hard enough, not positive enough, or are undeserving of understanding and acceptance. The underlying message is that “if this worked for me it must work for you, and if it doesn’t then there’s something wrong with you!” This message is so woven into our culture that we may not even recognize it when we see it, and may pass it onto others without even knowing it.
Consider these phrases for a moment. When you really pay close attention how do they make you feel?
“It could be worse”
“Are you still in bed?”
“You just need to change your attitude“
“You need to change how you think about your disease”
“A pity party”
“Suck it up“
“Don’t let it bother you”
“We can’t change what happens to us but we can change our reaction to it.”
“You’re doing it to yourself.”
“Complaining is only hurting you.”
“Stop being so negative”
“You don’t look sick”
“You just need to exercise more.”
“Pain is unavoidable, suffering is optional“
“Don’t give illness your attention by repeating the story of it over and over again. Focus your attention on other positive areas and often illness will get the hint and go away.” J.J. Goldwag
I highlighted the key subtexts in red to signify that while these statements may appear on the surface to be supportive they in fact contain messages that undermine one’s sense of self-worth, leave the person feeling inadequate, wrong, or as though they brought the condition on themselves or are somehow to blame for it or are not doing their lives “right”.
These are words of judgment, not of support, and we need to recognize what’s being passed along and the messages they contain which are toxic to others who are going through legitimately hard life circumstances. Platitudes are not what people need when in pain, when symptoms are at a fever pitch, and on those days when everything’s just too much. To family, friends, and supporters; Just giving the person a hug or acknowledging the validity of their struggle goes a long way. Don’t tell them to stop, because if they could they would. This is what they’re going through in real time.
There is no such thing as a good or bad way to feel about one’s illness or disability. Feelings just are and no they’re not like a water faucet. Only sociopaths can turn them off at will. For the rest of us we get over them when we get over them…in our own time-frame, and that’s OK.
Sometimes achieving a greater sense of peace requires better medical treatment for the condition and when the pain subsides the irritability or fear subsides. Sometimes other factors are keeping the person in a state of unrest and it won’t let up until those factors are ameliorated. Things are not always as simple as they appear.
Anybody who tries to tell you that you should just make up your mind “not to feel this way or that way” and tries to imply that when and how they think you should and if you can’t do that then you’re not good enough is not being truly supportive.
Anyone who tells you that you need to change to see or do things their way in order to be acceptable is not loving you unselfishly and they’re not valuing you for who you are. Your process is exactly that; yours. People need to respect that.
The image of the impenetrable stoic ill or disabled person is a hollywood image that no real person can ever live up to.
The person who never cries, never lets them see you sweat, never shows you their down days, the days when they can’t take it anymore, who only lives and speaks in positive affirmations, never gets irritated, never asks for anything, and never gets scared, and always gets things done yesterday simply doesn’t exist. Not being that completely mythical person doesn’t make you weak, it makes you strong because you’re authentic; not hiding behind a mask just to make those around you comfortable.
Chronic illness and the societal expectations that go along with it are hard. Whether it takes you 1 day or 6 years to feel better it is not your fault. You’re doing the best you can with what you have to work with. Let them see the pain you live with because that’s the only way to make the invisible visible and believe it or not it helps all of us and helps the non-ill to understand and to develop empathy. This in turn will make the world a kinder and more compassionate place, not only for us but for the generations that come after.
The best gift we can give to others in this community of chronically ill/people with disabilities is not to pass on those harsh judgments and expectations we get from the rest of the community at large, not to project them onto our bothers and sisters, because to do so leaves others in a very desolate place and in the end hurts everyone.
There are those among us who are the soldiers in civilian life, those who live out loud in order to make things easier for the next chronically ill person or person with a disability. While the harder aspects of our private lives are not pretty these are individuals who sacrifice so that others who feel more comfortable playing it safe won’t have to. They are not complainers. You never know when you might receive a badly needed medication, service, test, or treatment because of the efforts of activists within this community.
On a personal note; I heard today from the nurse doing assessment for one of the Medicaid waiver programs and also got an unexpected phone call from a mobile doctor’s office affiliated with another program I’d applied for and both will be out tomorrow. It sounded as though there’s a possibility that the mobile doctor’s office could order the IV Saline treatment. I told the woman on the phone my situation about having gone untreated for the past 4 months and that I’m a little leery of doctors right now. Apparently there are two doctors, I believe, one African with a name that was nearly unpronounceable and one Hispanic, and several nurse practitioners working for the company which is a mom and pop operation. I didn’t even know there were places like this anymore that made house calls. The husband and wife owners are the ones coming out here around noon to get me established.
Today I’ve been having quite a bit of pain and pressure in my jaw. The TMJ seems to be getting worse, and so do the GI problems. Now it’s as much upper as lower GI upset. It’s taken all day before those died down enough to eat. I need to really have the Gastroenterologist to check me for Gastroparesis. More and more frequently my food is not digesting and instead sitting and fermenting in my stomach.
Maybe at some time in our evolution the Darwinian principle “survival of the fittest” made sense for the continuation of a strong gene pool, but as human beings in modern society we should be more evloved than that, yet it continues to permeate our culture, or work, our healthcare, and even our relationships and when we as humans no longer meet the criteria of viability we are discarded like yesterday’s garbage.
For those of us with severe chronic disease this baser nature in those around us can prove fatal, be it a spouse, a friend, a relative, even a doctor who has been charged with treating us for these conditions for a long time.
I found out yesterday that at some point my GP decided he didn’t like me, and I guess that makes my life worthless and my not being liked is punishable by death. The “pink slip” was coming. It was just a matter of time, I sensed, but nevertheless it hurt to know that he was just barely tolerating me for God knows what length of time.
Apparently the straw that really broke the camel’s back was the “tone” of my message, but I had reached the limit of my patience after so much mistreatment that I was one raw nerve, and after 3 months of being left to suffer I was like a tormented animal in a trap. It wouldn’t have mattered what I’d said, he didn’t want me as a patient and was just looking for the nearest trash can to throw me into.
Because he didn’t like me he was impervious to my pain, my near fainting spells, my unquenchable thirst, my need for home healthcare, and the worst thing of all is now I know without a doubt exactly why he didn’t like me. It in truth was not what I said, or really anything I’d done, but most of all my very failure to thrive and the secret I continue to keep to myself which is part of the reason why. I almost told him, but after the last appointment when it became clear he was being mean to me I knew that secret would only be used against me, so I thought better of it.
The evaluation for that unspoken thing is stalled, like most of the other independent evals; there’s a long wait. In this instance it’s Medicare holding it up; some arbitrary limit on the number of providers in the state of Georgia. It could be 6 months before I can fully make it official and safely disclose it to any of my doctors.
It is this very condition that Emory is really discriminating against that which makes so many others a target of bullying and abuse. This thing has no curb appeal when you’re no longer a cute 5-year old. Even so, one can only do what one can with the tools available and I have lacked all the supports and resources I’ve needed all my life in order to cope with all my disabilities much less this doozie, and I know in my heart I’ve done the best I could given the fact that I’ve had to do it alone. That is all anyone can really expect, but they don’t care. They expect more anyway. It is only when I’m backed into a corner that I become the hellcat only after having been way too patient and way more tolerant than anyone should have to. Why is it only me who should be tolerant?
He says he’ll be available only for emergencies, isn’t that a laugh. What good could he be as he has no admitting privileges and besides what’s been happening has been a slow emergency that festers and worsens with each passing day. It is in the emergencies that I’m most vulnerable and why would I trust myself in such a condition to someone who despises and in his heart wants to hurt me? Perhaps they (those in the ER) are lying in wait for me to hit the floor so that they can finish me off. I will not give them the satisfaction.
I wanted him to understand me but he didn’t want to. He’d already made up his mind and nothing I could say would ever change it. It was as though every atom and every cell within me was rotten in his eyes and there was nothing in it worth saving. With a double-bind like that it leaves you no hope.
He said that he was highly offended by my saying he wasn’t honest, but the truth is he wasn’t. On a very core level he didn’t like me but he pretended he did and he led me on to believe he would act in my best interest, but he didn’t. What is that other than dishonest? His actions gave him away. If you care about somebody you don’t just stand there and allow them to suffer.
Besides, it’s in the Hippocratic Oath; First Do No Harm. Doctors seem to think that there’s a loophole, that they can get away with it as long as it’s passive-aggressive, but the truth is that medical neglect is doing a patient harm! He’d have handled it better just to put me out of my misery than to subject me to this Chinese water torture of a death by a thousand cuts.
On yet another level, maybe it was too easy for him not to like me as a convenient excuse for poor judgment the cause of which was something even more disturbing. I have my suspicions because this is not the man I knew for the larger part of nearly 13 years. It seemed almost as though his soul had been taken over by someone else. The last sentence I wrote to him was that he must be going through something and that I hoped he got healing for whatever it is going on in his life that would cause him to do what he did.
Hopefully those whose job it is to hold him accountable will do that and not let him just pretend nothing’s wrong, as I do not believe this only affects me, but other patients now and in the future (if his superiors fail to insist he take care of his problem).
There are times when I truly wish I wouldn’t wake up the next morning. I’ve been able to sleep less and less the past few days, and last night I only slept in catnaps because the last thing I ate didn’t digest. I can feel it still sitting in my stomach, yet it has upset my whole GI tract from top to bottom. Also, I’ve been overheating almost continuously now with just short periods of normal temperature sensation and cold spells in-between. I feel like I am truly in hell. My autonomic nervous system has turned on me and I can’t make it stop. I need that saline ASAP!
As for the referrals to Vanderbilt and Undiagnosed Disease Network the only thing I can do now is to ask General Neurology to do them and hope some random person filling in for Dr. V will do it. Also, they need to get a message to her as to what’s happened. She won’t be back until May, but I think she sees through the bullshit going around and really might actually care (based on what the Nursing Supervisor said on the phone) and my being able to read people on multiple levels. Despite her being a bull in a china shop I could decipher something else; something underneath. It took awhile to fully process but nonetheless it was there and I knew she had no ill intent. That energy was very different from The Dark Man. My first reaction was not to like her because she forced herself onto me, but I read that it was not malicious like he had been, and that something underneath was good.
Maybe in her mind she was thinking she wanted to get it over with now because she knew she wouldn’t be here for several months to do the exam if she’d waited. It’s too bad that she didn’t get to read the films from Piedmont or the Gallium Scan herself. She sounded as though maybe she was better than some others at looking for Sarcoid lesions. If they are there and someone else misses them, then what will happen? Will they want to take the extra time and effort to be sure?
I was glad that Dr. B. didn’t try to touch me when I saw him the last time. I could read enough just in his body language and tone of voice to know he was not on my side. To read it in his touch would have been like being clubbed over the head with it.
On Monday when I go into General Neurology I may be a mess but at this point I don’t care. Maybe they need to see how it really is for me after I’ve been targeted so callously and viciously by the system that grinds people up and spits them out in the name of healthcare, how I’ve been left a mere shadow of my former self. In some distant corner of my being I remain strong even now. I’m trying to hang on to the shred of dignity that still remains.
People who haven’t experienced this cannot imagine what it’s like to be branded with such libel in their medical record and then told it will sit there for eternity assumed to be accurate even though it’s all lies because of “policy”. Imagine someone took a piece of shit and put it in your clothing and you had to wear it going around stinking for the rest of your life. It wasn’t a part of you yet anywhere you went people would assume it was.
And then to be sick on top of it and not treated feels like I’m being punished for something I didn’t even do wrong. All I did was ask for what I needed. All I did was stand up for myself.
All I can do with this awful feeling is sit here and lick my wounds at home at the moment. It is the weekend, and on top of that I really trust no one right now.
I’m still talking but I fear that might end soon. When it happens I can’t will my brain to do it. Sometimes it just happens for a few minutes when the stimulus is short-term, but when the stimulus is longer-term I have been known to go for days and even weeks.
On the practical side I have gathered the names of some attorneys who are in the right specialties to right the wrong and have emailed one of them. I hope someone will help soon. That stuff cannot stay there if I am to have a chance for the treatment I need.
If you have been discriminated against in your healthcare at Emory I would be very interested to hear your story, especially if you have had a bad experience in the ER there.
There is a particular practice referred to as “gaslighting” or “psych-shaming”; in effect calling you crazy and undermining your credibility which is particularly damaging to one’s reputation and it can have the effect of slowing down or stopping your testing and/or treatment for your very real medical condition! When this is entered in your chart (even if it is not an official diagnosis but implied) it can cast a shadow of doubt like a black cloud above your head anytime a doctor in or out of that system requests your records.
To those of you just tuning into this blog I’ll recap briefly; this happened to me at Emory’s main Campus’s ER on Clifton Rd. on December 3, 2015.
I was medically neglected for most of 9 hours while in the ER, then abused physically and psychologically by an on-call neurologist,Dr. P. R. M., and then defamatory verbiage was charted implying that I had some sort of mental illness and/or was “feigning” my condition. His resident a few minutes after leaving the room came back and plopped her butt down on my weaker left foot. (See my archived post The Dark Man to read the whole story).
This atrocity was a malicious form of organized bullying and exploitation and I strongly believe violates Federal anti-discrimination laws; Federal Hate Crime statutes, The Americans with Disabilities Act, and The Protection & Advocacy Act of 1986.
Just yesterday the “patient advocate”T. J.” who actually is internal (employed and paid by Emory) made a harassing call to my home in an attempt to shut me up. She informed me repeatedly that “no one will be calling you back” and implied during the call that she has been tampering and interfering with my right to seek redress from her superiors and others within administration to get the complaint properly resolved.
This too is a violation of Federal law. Retaliation and intimidation against a patient for filing a complaint is strictly prohibited and is an added violation. If she were a true advocate she would know that.
I was instrumental in writing the 5-organization contract in Georgia when the P&A Act was first passed and have had extensive training in both individual and systems advocacy, have worked alongside attorneys, and used to be paid to investigate abuse and neglect complaints from patients in a whole range of facilities.
My agency Alternative/Atlanta; Center for Patient Advocacy covered the metro-Atlanta area. Due to funding cuts the original contract was taken over entirely by the organization whose job it was to manage the funding and disburse it to the 5 organizations.
Advocacy is not like it used to be anymore, and sadly patients have suffered because the demand far exceeds the supply of good advocates. This was my line of work before I became too ill to do it fulltime and before Georgia lost most of its funding.
When I did this officially I advocated for my clients as though they were family. I worked late to make sure they got what they needed, was on call nights and weekends, and it was not uncommon to see me show up at a hospital to meet a patient who had been placed in restraints or who had been physically, emotionally, or even sometimes sexually abused by staff.
I understood that in order to properly advocate for a patient one has to look deeper than “he said, she said” and deciding whom to believe. There was never any question as to whose side I was on; the patients’! There were no divided loyalties or conflicts-of-interest and I pursued the course of action and outcome the patient wanted.
I also participated in annual reviews of all advocates nationwide by an independent evaluating agency, and my charting was deemed best in the country of all advocates employed by this Federal Protection and Advocacy system.
I had hoped to one day make a good living at it, as it has always been my passion to help those who need someone to stand up for them to level the playing field. I have a saying;
Old Advocates Never Die;
They Just Lose Their Funding!
Since my funding was cut I have continued to advocate wherever I saw a need, lending my skills on a volunteer basis to a variety of worthy causes. I believe I have been called to do this and that my life experience is in a sense a test-case which has led me to understand many different populations and their needs.
There is nothing more devastating than fighting for ones’ rights alone, but every cause worth fighting for has its true allies. One just needs to find where they are. I believe that very rarely is anything just an “isolated incident”. Most incidents are a microcosm dictated by pattern, and if you look beneath the surface you find what the pattern is and usually the motive as well.
For every complaint you officially get there are likely many more that never reached the official grievance stage for one reason or another. Patients are often too ill or too busy, or they are too upset by what has happened to them to go through all that’s involved in filing an official complaint, compiling the evidence, and following up (sometimes numerous times) to obtain the outcome. If the complaint is denied, then they are required to complete numerous other formal procedures, fill out forms, call and leave messages, and keep documentation of names, dates, places, and other events relevant to their grievance.
This is precisely why good advocates are needed, especially in instances in which the victim/survivor’s credibility is under attack.
All the self-advocacy in the world will not save you if at the very core those you go to for help do not believe you.
When authorities see one patient with a complaint they might not take it as seriously as when there are 5, 10, 50 or 100 such incidents because now we are talking about a pattern of conduct that raises the antennae of state and federal regulators on multiple levels.
Remember that even when things feel hopeless and you feel like the only one, most likely it’s not and you aren’t. There are people floating around, maybe closer than you realize who have been through something very similar. You just need to locate them, come together, and organize to affect social change!
Maybe you have had an experience at Emory in which you have been discriminated against in your healthcare because someone didn’t believe your symptoms were real, you may have been accused of “feigning” or making them up, “exaggerating”, being “dramatic”, being a “hypochondriac”.
A doctor may have called your condition “functional”,“psychogenic”, “emotional”, “psychological”, “psychiatric”, or “Hysterical Conversion”, “Factitious Disorder”, “Somatoform Disorder” (see my earlier post The Dark Man).
Then you noticed a lack of concern from your treating professionals, their treating you as if you were a minor child and not respecting your boundaries or wishes (seeBull in a China Shop General Neurologist), irritation directed at you, your symptoms ignored or directly disregarded, and ultimately a slowdown or stoppage of care. (For examples of this see my blog post Not Being Believed).
The above terms are buzzwords that are designed with maximum shock value to sabotage a patient’s credibility and an implicit warning to doctors to steer clear.
Let’s just be honest; there is nothing helpful in charting such things about a patient and this can only indicate malicious intent. It is fear-mongering of the highest order and one of the most vindictive acts a doctor can level against a patient because its effects follow the patient long after the doctor is gone. Any seasoned investigator will recognize this immediately and people who work in the ER (if they are honest with you will know the subtext they imply).
If any of this sounds familiar to you please get in touch with me by posting on this blog in the comment box below and I will give you some ways that you can submit a signed statement to me about your experience. If you can also get the statement notarized then that’s even better than just your signature alone.
I’ve included some links to articles written in peer reviewed medical journals that suggest that patients given this label even when it is given as an official diagnosis do in fact have a real neurological problem.
These citations will help you make your case should you decide to take legal action or even if all you want to do is to get your doctor to stop viewing you and treating you in this stigmatizing way. The post A Few Lateral Moves, but an Ace In The Hole provides you several avenues by which you can file external grievances such as with the Office of Civil Rightsand Health And Human Services’ Secretary Silvia Burwell. These are the branches of government most powerful in righting these types of wrongs committed in healthcare settings.
If you are a news reporter and are interested in doing a print of TV story on this or an expose on a longer show, feel free to get in touch with me. I am ready and willing to do interviews and as time goes on there most likely will be others who would speak publicly about their similar experiences.
As Emory has been consistently refusing to take responsibility and to correct this problem I feel it’s imperative now to use all available platforms to exert pressure on the corporation to ensure that they put the best interest of patients first and to stop these unprofessional and corrupt practices. I will be drafting a press release shortly.
–>You can make a statement to The Powers That Be now <—to have legislation drafted that would stop and prevent this from happening to patients on a national level! Several of us organized and have created a petition which will address Institutional Bullying in Healthcare Settings as a unique and enforceable unlawful act treated as particularly heinous because of the extreme power differential between medical professionals and patients and the inherent vulnerability of those of us chronically ill/disabled.
We must rely on doctors to look out for our best interest when we’re ill at a time when we’re at our most vulnerable, and when they don’t they must be held accountable.
It’s only fair, so please sign the petition and add your personal account detailing what abusive/neglectful/reckless, or malicious behavior healthcare professionals and/or healthcare administrators have done to you where it says “Reasons for signing” below the body of the petition on Change.org, and be as precise as possible. Each signature and letter will be auto-forwarded by the site to Secretary Burwell for consideration by her committee and Congress as a whole.
Don’t let these unscrupulous people get away with this type of cruelty any longer! It’s time for the patients to rise up and insist that we be treated as valued customers with the authority to choose what happens to our own bodies, not treated as minor children, the “village idiot”, trouble-makers, nor common criminals for exercising that right!
It seems my case has been made into a political football, and the Dysautonomia, a hot potato. Although I do think some headway has been made it is far from over and there are still some elements that wish me harm who are trying as hard to have thingsnot work out as I am trying to make things work out.
I don’t think my GP is going to treat me no matter how many diagnoses I get. Once I meet that bar I can pretty much bet he will produce another one. If obtaining a diagnosis were his intent then I truly believe he’d have been actively facilitating these independent evaluations.
Earlier today the woman answering the main switchboard informed me that my pulmonologist and GP were talking. I don’t know if it’s possible for my pulmonologist to talk sense into him and since by the end of business I’d heard no new news I had to conclude that any attempts must have fallen on deaf ears.
There is something going on that I’m not privy to, and probably neither is my pulmonologist; probably something of a systems nature and maybe Dr. B’s also burned out or has some personal problem he’s not willing to admit. None of this adds up. He himself has enough proof to diagnose me with the Dysautonomia 10 fold. They can sort out whether it’s Primary or Secondary later.
I can tell you that there are some political things going on behind the scenes that I’m becoming aware of now. I was informed today by the “patient advocate” who deals with main campus ER (and I use that “advocate” word loosely) that “nobody will call you back.”
She is making rude harassing and unsolicited calls to my house now to try and intimidate me because she knows she’s handled things very unethically and people are now aware of it. I don’t respond to threats and intimidation no matter how ill I get and this corruption will be rooted out. T. J. is no patient advocate. She is a wolf in sheep’s clothing. She’s most likely logging into the messages that come in and reading and violating patient confidentiality.
I’ve already caught the Head of ED doing exactly that. He’d admitted it in a letter he’d sent me in which he tried twisting around something I’d said in confidence to my GP on the Patient Portal. Since he did not treat me that is by Emory’s own regulations a violation of privacy!
There are some people at Emory who are not connected with T.J’s office that have not called me back today either, people who ordinarily would, so I wonder whether that has any connection to her. She implied in what she said to me by phone that she was messing around trying to block things she has no business blocking. Emory does not need to employ people like that.
I finally received the certified letter from Emory Medical Records. They have officially refused to even amend the ER record and are claiming it’s “correct and complete”. With a position like that these people are really throwing the dice that I’ll roll over! They clearly don’t know me. I’ll die before I ever let myself be defamed in such a malicious way. If they think this will run me out of town they have another thing coming. This is where I live and I’m going no damnwhere!
A woman fighting for her life is nothing to mess with. I have my warpaint on and I am ready for them! Clearly I have threatened to unearth something much bigger than my individual incident. Although I am not entirely sure what that is, I suspect the hospital may be hiding some malfeasance involving care rationing of low income patients. This is discrimination! Emory is a high volume hospital with a mix of patients from one end of the spectrum to the other. The only exception to this is that they don’t take totally uninsured patients and don’t write off charges.
As a high volume hospital they would have a vested interest in limiting time and resources given to low income patients while concentrating more time and resources on higher-income, better insured patients. They are not ethically supposed to do this, but it often happens in such health systems. People just don’t openly admit to it. If they receive Federal funding they can lose it if found to be discriminating based on income, disability, or any other minority status.
That could account for why when my disease accelerated my care did not also accelerate. One would think that care would be expedited to match need, but in an instance where there is care rationing it actually is just the opposite. That would also explain why my GP and several other doctors waited until I totally crashed in November and I had to make the decision to go to the ER. That way they incurred no costs and instead Piedmont admitted me (saving Emory even more money). Then 4 days after I was discharged from Piedmont too early I ended up at Emory’s ER and they found every possible way to cut costs on me.
* They put in an IV but didn’t use it for fluids even though it was indicated.
* They ordered but never offered nor gave me Maalox and Ibuprofen
* They ordered and offered only Valium (2 in a 9 hour period to be exact and I only accepted the first).
* They saved money for the hospital by not feeding me for 9 hours and only issuing 1 meal at the very end.
* Nursing care was minimal so they spent almost no time/money on that. I was mostly left unattended.
* They didn’t officially admit me other than moving me to their bridge unit for about an hour and I was discharged without an overnight stay.
* They had the ER doctors and the resident do a neuro exam on me (3 to be exact) which they figured they could bill for and gain a higher reimbursement rate because the skill level was higher than nursing. They had better not, but in case they do, Medicare might think something looks funny that 2 doctors felt the need to test my reflexes one right after the other (except that Macdonald came in to do it later). Overkill nonetheless!
Then after all that the 4 of them (Hudak included) couldn’t manage to put their microcephalic heads together and come up with a real diagnosis!
Yup! Sure looks like care rationing to me! You can bet that ER will get no more business from me no matter how sick I become! The other day when I almost fainted twice I could have gone 2 blocks down the street but refused! That’s how much I can’t stand that place.
I’m already working on a letter to Secretary of Health and Human Services Silvia Burwell to appeal Emory’s Dept. of Medical Records’ refusal even to amend my records from that awful ER experience and I will be asking for a full-scale investigation not only of the mishandling of my case but systemically. Some staff have shared with me that the ER has alot of complaints. While I’m at it I can have her check and see how many of T. J’s complaints are ruled “unfounded”, and how often records are not amended as requested. I’m sure that will be quite illuminating.
Tuesday I have an appointment with the Nurse Practitioner at General Neurology to go over various scans and come up with a “plan”. With all the internal politics going around this place I really feel uneasy about meeting total strangers at Emory and discussing my case. Piedmont was supposed to be FedExing a disc to them so that doctors there can read the films themselves but I was not able to reach a live person there in Piedmont Radiology. Nobody at Emory General Neurology got back to me today to confirm the shipment on their end as promised yesterday. Dirty tricks? One has to wonder.
I think it’s time to order some more CBD chocolate covered Pistachios and maybe other edibles, as it could be a while before I see treatment from a doctor. I didn’t order enough really for 2 weeks the first time around as I found I needed about a quarter of a pack per day to feel improvement in my pain (probably about 125-150 Mgs/day). Nonetheless when I did reach a high enough dosage I got some relief. Maybe also the sweetness will get rid of this terrible taste of salt in my mouth that is now present nearly constantly.
Some have called me an idealist and did not mean it as a compliment, but there is something within me that in spite of all the negative experiences; all that can (and does) go wrong in life, still believes that the 100th time’s the charm.
Years ago I had a friend who had left an abusive husband who beat her repeatedly. To escape him she had to leave her son behind (something she hated to do, but there was no way she could have taken him with her with no money and no place to go, sleeping in laundromats, and staying in homeless shelters, and her husband would have probably found her before she’d had time to leave town and would have killed them both). In fear for her life she fled from Alaska to Georgia to start a new life, then obtained a divorce by mail. It was interesting how she healed from this toxic relationship, the process by which was partly healthy and partly not. She drank too much, slept around in an attempt to validate she was lovable and for a reliable place to live, and often had rocky relationships in which men sought to control her because of their higher status in life.
Even with all these unhealthy coping mechanisms she had some that were quite healthy and quite transformative. She was a heavy smoker and devised a way to systematically cut down her use of tobacco until she successfully kicked the habit.
She also had a wry whit part of which she’d honed from reframing phrases used by her abusive ex that (ironically) helped her to find humor in some of the must un-humorous circumstances. One of these phrases was
“First you gotta find somebody that cares…Then you gotta tell ’em.”
While these words were used as a sarcastic message to tell her he didn’t care about her, once she’d removed herself from his life she was able to take this phrase and change the connotations from those he’d meant to discount her, turn them around and use them herself to empower her.
It occurred to me that taken literally this is exactly what she did. She found somebody that cares and she told them…and low and behold they listened. She left a place where her husband had all the control and influence and she held no credibility and widened her circle to find those who did not have split loyalties and who could truly support her.
In my 20s I took lots of people into my home struggling with difficult circumstances and she was one of them. I knew how it was to feel that nothing you said would make a difference, to feel powerless at the hands of your abuser, to have one’s whole environment completely controlled, and I wanted to do what I could to extend any street cred I had and share it with others so that they could have a soft place to fall and to heal at their own pace, in their own way.
Sometimes this process starts by one’s groping in the dark, but one must be allowed to do this without another removing their free choice even when it may appear from the outside that the person has no idea where they’re going. Anthropology suggests that man does what one can to always right ones-self no matter what. It is an instinct we all possess and I truly believe that the best outcomes are self-directed and will believe that as long as I live.
The phrase used by my friend’s ex and reframed by her is a model by which one can find their way out. When I first started this blog I made the difficult decision that I was going to make my process public because I felt (and still do) that much of what allows atrocities, stigma, and discrimination to continue in modern society is that those who are targeted are often beaten into submission and into closets where they hide in fear and shame while those who commit these crimes against them prosper and go on with their lives as though nothing happened.
All too often society is more concerned with maintaining the reputation of a perpetrator than they are the survivor. These nameless, faceless people who remain in the shadows die silently and are sometimes even vilified when they do speak out. Their truths are not considered positive enough to be discussed in polite company and attention is focused on their “telling” instead of on the act that was committed against them, and the important message gets lost in the translation.
Native American culture places alot of importance on the story as a transformative modality, while Anglo culture tends to dismiss it as overly sentimental or even “circumstantial”, yet who can really judge what is and is not relevant. It depends on the beholder and whether he or she values the teller and the wisdom the story imparts.
Those who do transform and reinvent themselves usually do so because they never allow shame to define them and they tell, and tell, and tell until they find their supporters who are loyal to them and not to their abuser(s).
When one does this an amazing thing happens. It takes the power away from the abuser and creates change both inside and out. Sometimes you have to go through 100 who don’t hear your message before the tide turns and it resonates, but trust your own process that it will. If we fail to trust our own judgment then the abuser wins and gets to define us by his yardstick. It is natural and human to have moments of self-doubt, but at our core if we believe in ourselves we will find those who believe in us and will accompany us to the finish-line.
Yesterday even as sick as I’ve been feeling, I began to notice a shift. I think it began when I saw the physical therapist. Although she couldn’t help me (with physical therapy) in some unexpected way she actually did help me by validating that I knew what was right for my body and what wasn’t. She recognized without my saying anything in the first few minutes that the plan that had been laid out for me was all wrong. If the shoe didn’t fit I could not wear it and sooner or later this fact would reveal itself. Although this shift was long overdue I began to see that the professionals charged with helping me would eventually see for themselves what I’d been saying all along, and those that didn’t would be replaced by new supporters even without my actively replacing them.
Today I faxed the material to my pulmonologist about Vanderbilt’s Autonomic Dysfunction Clinic and instructions for referral and information about the Undiagnosed Disease Network and its multi-site NIH-funded study. This innovative clinical trial seeks to help people who are having difficulty getting a diagnosis for their persistent symptoms and are often vilified for their doctor’s inability to put a name with the disease-process robbing them of their function, peace-of-mind, and even their lives. Its plan is to map the genome of these people with unusual and unnamed diseases that don’t fit the mold as well as to use other state-of-the-art methods to quantify what other tests commonly used in clinical settings don’t or can’t. Yesterday my pulmonologist sent me an unequivocal reassuring message that in no way was he going to back away from me and on the Patient Portal that is a big show of support. He had the courage to do what my GP couldn’t bring himself to do and it meant alot to hear him say that.
Knowing that he had access to the full electronic record that I could not read I knew that he probably read whatever Dr. V. had written and that most likely it was not the ominous sign my GP had implied. This validated further my growing sense that it was more a matter of how my GP was taking what she’d written than what she’d actually written. Further still, the Nursing Supervisor of General Neurology returned my call today and shared with me that Dr. V. had validated my Dysautonomia even though she’d charted it “by patient report” in the context of her saying she wanted to do the Gallium scan to find out whether the Dysautonomia was secondary to my Sarcoidosis (important point being that she believed it/me). While the Nursing Supervisor couldn’t guarantee that the Nurse Practitioner or a doctor covering for Dr. V. would write the saline order, she did say that she’d speak with the Dept. Head, Dr. G.E. tomorrow morning and find out whom I should make an appointment with and that the reason they wanted me to come in is because they want to carve out enough time to go over all my comparison MRI and CT scans and my Gallium scan and then advise. I’m thinking they may have found something, as she mentioned it may make a difference whether the Dysautonomia is primary or secondary. She did say that the Nurse Practitioner knew something about Dysautinomia and was patient-centered and so was Dr. E. Maybe, just maybe this will finally happen.
It was one of those light-bulb moments when I realized that when my GP had told me in the office that he “could not take any of” my “patient reports at face value” and that Dr. V’s validation that I have a real underlying neurological condition “wasn’t good enough” (in his words), what he was really telling me was that he (not she) was looking for reasons not to believe me (despite the fact that she did!)
While I still don’t understand his personal motive for doing this to me after 12 years I thought he’d supported me, I know now for sure that it was his issue, not mine and not hers. I don’t know if I’d ever get the truth out of him as to why he’d throw me under the bus like this, but it is comforting to know that other doctors I see do not share his cynicism.
I believe that his supervisor knows the truth about why he’s doing this and that’s why she (unlike he Neurology Nursing Supervisor) hasn’t called me back. I’d left a message on her voicemail saying I needed to know the status of the situation and whether he’s through treating me like a ninny or not because I need to know whether to count on him for anything in the future because I cannot go on like this with his foot-dragging and passive-aggressive behavior.
If he is dead set on treating me this way and viewing me so unfavorably then I won’t bother wasting my time with him, and will transfer everything over to other doctors, whereas if this is a temporary issue due to something going on in his personal life then maybe it could be remediable. The longer it goes without a phone call from her the more I begin to suspect the worst.
If nothing else I’d like to get some closure even if it turns out his “support” for the entire 12 years was merely an act of deception on his part. That would hurt, but at least I could proceed based on the truth rather than going in with rose colored glasses just to have all my goals tanked at the worst possible time. I’m not one to jump to conclusions and just throw people away and I prefer to work things out with them if their intentions are good, but having illusions that intentions are good when in fact they aren’t could ultimately do me more harm than good. As my health is declining it is becoming ever more imperative that every doctor on my team be working for me and not against me if I am to have any chance of getting what I need to have the best quality of life.
Eyes on the prize, everyone. All hands on deck. I guess we’ll see when I go in for this consultation whether they actually will support me in my plan for my treatment for my bodyand just how patient-centered they are in supporting my process.
I awoke again at some odd hour with stomach still rumbling and a burning inflammatory pain in my muscles accompanied by an intensely salty taste in my mouth. It was the same way I felt before ending up in Piedmont and I knew it wasn’t a good sign. I had an appointment yesterday morning for a physical therapy evaluation and hoped this feeling would pass and that things would go smoothly, but all I really felt like doing was going back to bed to sleep this off.
Transportation called to say they were coming between 8 and 9 AM and as I got dressed I noticed that my throat felt a little strange but I couldn’t quite put my finger on how. It was almost as if I had some sort of acute allergy, but I have actually been lucky in that department and have never been prone to allergies, so I figured it must be something else.
Before 8 there was someone at the door. I opened it to find a middle-aged black woman dressed in what looked like a blue scrubs outfit and wearing an ID badge like they do in hospitals.
My mind must have not been fully alert yet because for some strange reason I got a little mixed up and wondered if maybe this had something to do with my search for a personal assistant. I thought it was a bit too early for the nurse’s visit from Medicaid, but really couldn’t place anyone I knew in this type of clothing. She identified herself as being with the transportation company and I told her I’d be out in just a few minutes once I’d gathered my ice water.
In my hurry to get out the door I totally forgot my pillow, something I rarely do and always regret. This power wheelchair is hard on my butt and the back of my left leg especially and it wasn’t long before muscle spasm and a growing stiffness started to set in there and in my shoulders and upper arms on both sides. A slim elderly woman with dark denim jeans sat in the back of the van and we dropped her off at a day program downtown. She clambered past me saying hello and squeezed past to exit through the right-hand door on the passenger side.
The pain continued building to about an 8 and I was beginning to really need some medication by the time we started heading in the direction of Emory Rehab. Hospital. When we finally arrived at our destination I got off the lift and entered through some automatic glass double doors and into the lobby where a young and chic light-skinned black woman sat behind a circular desk at a computer terminal. She was smiling with a pleasant fine featured face and nicely quaffed hair that looked as though it had been straightened or as though she was mixed with Caucasion or possibly Somali though she reminded me of Shirley Jones, who played the mother on that old show The Partridge Family that was popular in the 70s. She greeted me as I passed by and I spoke briefly but was mostly focused on taking something for the pain before I got into any exercise, so I entered the room where I obtained my paperwork, signed it and then headed upstairs to the 5th floor via elevator.
The building was old with hard floors and wooden paneling that had been painted over and some of which had chipped and I didn’t feel entirely comfortable there but couldn’t figure out exactly why. Maybe it was because the lighting was dim and the place seemed outdated as though it were Emory’s step-child, a far cry from the slick danish design utilized in most of its other buildings (not that I like that decor either, but somehow the building seemed neglected).
Although the office staff seemed very kind I picked up an uneasy energy. Usually I am right about such things even before the feeling is validated with hard data. The clerk gave m some more paperwork to fill out some of which had questions on it I had never encountered in physical therapy before, questions about making social conversation and expressing oneself, which was kind of uncanny because I was having just exactly those types of problems in addition to my muscular problems. My cognitive processes seemed stuck in a mire this day and I really didn’t feel like talking. It wasn’t depression but more a matter of just feeling overwhelmed and maybe a little out of my element.
Soon a woman approached me introducing herself as Beth. She seemed kind of wooden and mechanical and there was a pushiness about her personality that seems common in the physical therapy field, not in the same way that Dr. V. is pushy, but more a type of edginess as though there was an anger hiding just beneath the surface.
I found myself distracted by all the sounds in the building and had trouble focusing enough to finish filling out the form. She brought it and me into a large dimly lit atrium with lots of padded benches in it. It felt a little too public to me but I tried to block out all the people working out on various machines, benches and parallel bars and watched to see what she was going to say or do next.
First she launched into a mini lecture about how this isn’t for everyone and that she had to warn me that after the evaluation she might determine that it would not be of benefit to me.
She began going through the rest of the questions to get as many answers as she could. I tried my best to answer but the time-frames asked were just too hard for me to remember and finally she put down the form and turned her attention to asking me some things such as did I live alone and whether I had pets. I told her about my dog Carmella and my Ball Python, Velvet. She reacted with a strong aversion to the very thought of a Python stating that she knew that Pythons “squeeze you to death” and seemed very hypervigilant based on what she’d heard about those pets released into the Everglades.
This is something I know about and those poor animals have a much undeserved bad rap perpetuated by ignorant and fear-mongering people, but seeing how Beth was positioned to strike at little or no provocation I thought better of engaging in further discussion with her on that topic after saying how innocuous Ball Pythons are and how they are more likely to hide their head than to attack people, and that what she most likely heard about were the really big constrictors such as African Rock Pythons, to which she said, “A python is a python. You can’t convince me to buy into that. They’re an invasive species!” Honestly, if the truth be told I felt she was the invasive species in my personal space and in my life whereas my sweet little Velvet was a comfort who posed no such threat. I wished at that moment I was home with my pets where I felt safe and at peace.
This felt all wrong and I thought if I have to work with this woman I don’t know how honestly I will get through it without a snag. Her irritation was like her skin turned inside out with all her internal organs exposed for the world to see. It was more than I wanted to know.
She engaged in some sort of nitpicking with one of the other physical therapists across from the bench I was lying on. I could not hear the words but it was clear that the two disliked each other and were barely tolerating working together. I sat up and looked over at the two, at which time Beth said “I need you to wait. I’m having an issue with someone.” Again, I thought TMI for the workplace. This unprofessional display only intensified the uncomfortable atmosphere and I wanted to leave. The pain medication and antispasmodic I’d swallowed before the session started had yet to take effect, and overall the day was not off to a great start. I’d told her briefly about my waiting for the movement disorder specialist at UF and how far in advanced they were booked up. She seemed genuinely shocked.
I explained to her that I have alot of fatigue and thatI dobest in the water, so I would like to have that be the focus. She commented that we couldn’t do that today and seemed to have an overall fatalistic demeanor about it as a whole. I’d brought a swimsuit just in case and wished I could just submerge myself to remove the huge weight hanging on my frame, but no such relief was forthcoming. As for massage I didn’t feel comfortable with her touching me with the type of energy she emitted, so I didn’t bother asking about that.
The evaluation that followed was one of the strangest I’d ever encountered among the numerous evaluations I’d had at various PT practices around the city of Atlanta. She had me lie down on the padded bench and pushed my legs into various positions. She did nothing with my arms although I have significant pain and spasticity in those too. She pressed and pushed and prodded my feet and legs in various lying down and sitting positions to see what my muscles would do. There was alot of jerkiness. Then she had me take a few steps on the parallel bars. I was completely exhausted after just a few steps, muscles in my upper body burning and inflamed as I supported my weight on my arms and shoulders.
As I got back into my wheelchair and we came back to the padded bench her expression had taken on a sad appearance. I knew that look well as I’d seen it before when I’d tried CPAP in the sleep lab and failed miserably, and the technician had been so saddened by the significance her experience had taught her about patients in my condition that she could barely keep her composure. It was clear that Beth too was ascribing an ominous meaning to my prognosis based on whatever she’d learned about body mechanics and that it wasn’t good. She didn’t elaborate, but she didn’t have to. I got the gist of it.
“I’m sorry” she began with a grave look on her face as if a close relative had just passed away and she was delivering the bad news. “I really don’t think you’ll benefit from physical therapy. Your condition is unlikely to improve with exercise. I think you should just do what you’ve been doing. And other than that pressing down on your feet when you are able since the spasticity seems to be less when you apply counter-pressure. It seems to be much more jerky when you’re moving your legs in the air.”
This came as no surprise to me and actually under the circumstances I was rather relieved. I guess you could say it was a good news/bad news scenario. I have honestly been in no shape to do much of anything strenuous and thought Dr. V. was being a bit overly-optimistic in issuing such a referral, especially given the fact that aquatherapy was not being offered to me. Beth wished me well at UF and I told her that my impression is that my brain was probably sending the wrong messages to my muscles and that maybe the clinic in Florida would identify a medication that will reduce this to a low roar. She agreed and we said our goodbyes.
Once back downstairs I called transportation and told the driver I was ready to go home. She stated that she’d be by in about a half hour. I sat in my chair patiently waiting and drinking my ice water. Suddenly out of nowhere I began to feel severely faint. Leaning down to hang my head between my legs it seemed started to reduce the onslaught but it was short-lived, followed by a stronger wave which was worse than the first and this one threatened to take me down, my vision became swimmy and then began to turn black. Then my hearing started to go. When I realized that sitting in my chair with head down wasn’t resolving it I waived over the receptionist to the left of me and asked if she could help me lie down or find a gurney. She replied that there were no gurneys but that she could help me to the leather couch at the other side of the room. I told her to prop up my legs in a position elevated above my head and she did. It took quite awhile before it died down and it was touch and go before things subsided enough for me to get my bearings. A nice woman came over to help me and she offered to call transportation back since a half hour had long passed and no ride yet, but the phone was rolling over to another number with just a voicemail, so I had her call quality assurance with the broker system to let them know I needed to get home and into bed ASAP. She did so and once we thought they were close to the entrance two women helped me back into my wheelchair and out to the driveway, but it turned out to be someone else’s transportation van, not mine.
The second woman who had helped me call quality assurance went in and brought out some saltine crackers which I was really grateful for. I ate several and in a few minutes began to feel a little more solid. Finally my ride appeared and the driver told me that she’d been tied up with another crisis; an elderly woman needed to go to the ER she’d scheduled to pick up for a doctor’s appointment. She had family but apparently they couldn’t take her themselves so that tied her up there at her house longer.
When I arrived home I immediately wrote my pulmonologist on the Patient Portal telling him what happened and that I really need his help. He’d answered my message from the night before asking if one of the doctors from Piedmont would refer me to Vanderbilt or put down the official diagnosis. I explained to him that they were hospitalists only and that they probably would not since I’d been out of their hospital 3 months already. I’m trying like hell not to end up back at an ER.
I never heard back from Dr. W. a week ago after the message I sent through her receptionist. I plan to call her back but have an MRI today on my TMJ at 8:00 AM. Will get on that as soon as I get home. Just want to get this appointment out of the way and then stay in bed until we can get treatment on board.
I fear after how I was abused and charted on at Emory that any ER in the city most likely would treat me badly, not treat me at all, and it would be a wasted trip anyway. All ERs are hooked up electronically and the first records they look at are your last ER visit. That would not be good. I wonder how long Emory will let this go on and how severe it will get.
My GP never lined up a hospitalist to work with for direct admission in such an event and it’s getting dangerously close to my needing hospitalization once again. I need to call his supervisor back and get her to find out why and tell her about these episodes becoming more frequent now. I need to let her know how important this is and that I cannot safely go to an ER and that to do so would surely put me at further risk. Things are getting really crucial now. Someone has to do something, and soon!
Friday came and went without an order written. Dr. V. was “with child” as she so aptly put it at my appointment with her two weeks ago, and wasn’t much help, and so my Dysautonomia rages on. Even with her baby’s untimely birth she was able to tell the nurse to have me “follow up” with the nurse practitioner when she could just as easily just given them permission to write the order for the saline and maybe I’d be starting to feel better right about now, but that would have been too simple. It seems that every time I start to “think positive” I am let down and I find out things aren’t looking up afterall.
I told the nurse who had delivered the message that the nurse practitioner was welcome to call me and write the order but there was no need for me to waste a trip to go out there just so that I could tell her what Dr. V. already knew herself. I reiterated that this has gone untreated for 3 months and my patience is reaching my limit. If Dr. V. was so concerned about my “stress” level then why stress me out further by making things unnecessarily hard for me. This runaround I was getting was BS and everyone, especially Dr. V. herself knew it. It was high time they put this condition down in my chart officially, quit monkeying around, and get down to business.
“Look” I told the nurse, trying my best not to hit the roof, my irritation level already approaching 10, “I’m chronically ill. I have 3 appointments next week and I can hardly withstand being out of bed in an upright position for 15 minutes. I’ll be lucky if I can even tolerate the appointments I’ve got, so I sure can’t afford to make more trips out that aren’t absolutely necessary. That’s the whole point! I need this treated at home. All she has to do is authorize the order written by the nurse practitioner or whichever doctor is covering for her. It’s not that difficult. My GP was going to treat it until Dr. V. dragged extraneous stuff into the equation and he backed out, so in all fairness, she is responsible now. Number one; this should have been entered officially in my chart among my diagnoses. Dr. V. acknowledged that she was aware of it when I saw her. All the data and pictures of my purple feet are there for any doctor to see anytime they want, and number two; we already know that saline works for me, so why go back to square one and reinvent the wheel?”
“Yes, Ma’am” the nurse replied sheepishly. “I understand. I’m just passing on the message. There’s nothing I can do.”
Then an ugly truth occurred to me. The reason they wanted me to waste an appointment was so they had another reason to bill my insurance (which I’m sure doesn’t pay much), but that’s not supposed to make a difference in the level of care I get. Right???…Right???
“Let me speak with Dr. L. Isn’t he the head of the department?”
“No That’s Dr. E.”
“OK, then could you please let me speak to him? This is becoming too much to take. It’s time they did something about it.”
“No I can’t let you talk with him or any of the doctors. I have to have you go through the Nursing Supervisor.”
“What? I can’t speak to any of the doctors? That’s ridiculous! Look, it’s fine with me that Dr. V. is on maternity leave but if nobody on the team can call me to do anything about this then what good is this clinic? She assured me that I would not be left uncovered in her absence, but that’s what’s happening. One would think they’d prefer treating this earlier than later so it doesn’t become another emergency. I’ve already been hospitalized and in the ER in just the past few months. I can’t let that happen again. Things are already getting worse again.”
“That’s not how this clinic works. I have to have the Nursing Supervisor call you.”
“OK, if you absolutely must then please ask her to call me today so we can get this resolved. The weekend is coming up and I’m really not feeling well. I don’t want to waste anymore time.”
The nurse took my name and number and told me she marked the message high priority, but by the end of the day no call had come in.
Saturday I awoke from a sound sleep with a weak, irregular heartbeat and feeling woozy. There was an adrenergic feeling in my chest and in my muscles as though lactic acid had built up and I’d overdosed on it; a horrible feeling I know all too well (and there was nothing I could do to make it go away and nobody to call). All I could do was wait it out until Monday when doctors were back in the office.
At times like these it’s easy to start wondering why you’re being allowed to suffer. Do they dislike you? Are they that clueless about this condition as to think it’s minor and doesn’t need treatment, or do they just think your insurance pays so little you’re not worth it. None of these rationales is good because the long and the short of it is that you’re being neglected no matter how you look at it. That fact cannot be denied. Seriously, my dog gets more compassion at the vet’s office!
Sunday rolled around and I awoke early, several different times; first with fasciculations in the toes of my right foot, and then followed by a horrible rumbling in my stomach and the realization that the acute flare had hit once again with a vengeance. It felt as though someone was literally twisting my intestines from the inside. I gripped my lower abdomen in agony and the pain was so piercing I could hardly catch my breath, burping, lightheaded, and feeling slightly to moderately faint, with hissing in my ears. I then started getting nauseated. It literally felt as though my guts were going to explode! Then I began overheating. Every minute felt like an hour as I lay there waiting for the pain and gastric upset to subside.
Tonight I’m still not feeling well. I’m a little concerned about the appointments that got jammed up this week after the care slowdown because I feel like I really don’t need to be up out of bed. My stomach is rumbling, and I’m overheated but sort of feel like I’m having a cold sweat at the same time.
Yet another weekday has gone by and after a few more calls to follow up still no help from General Neurology, Nursing Supervisor or otherwise. Message is still pending according to the switchboard operator as of late this afternoon.