The cover picture I chose for this post is a sign I keep on my wall as an affirmation, visible from my bed. In the light of all that’s gone on lately I am struggling to hang onto my self-esteem and have periods of self-doubt in which I begin to wonder. You might have noticed that the letters aren’t straight; that they veer up from left to right. (More about the significance of that later).
First, I received a letter from Emory’s Chief Compliance Officer, A.A., stating they refuse to ban the offending doctors from access to my electronic records (she says “for purposes of billing”). I had to laugh at that one, as it seemed the epitome of irony that they should even think about having these morally sick and impaired “professionals” paid by insurance nor by any source for that matter after how badly they mistreated me. Emory is out of its collective mind if they think these people should be in any way rewarded for abuse and neglect! If the hospital wants to stand by these criminals then they can just eat the cost as far as I’m concerned, and I’m actually considering sending each of the 4 doctors a bill of my own for wasting 9 or 10 hours of my time, for the mistreatment (physical and psychological) and failure to render aid, and for the libel that still sits in my chart because of their malice and irresponsibility for which I will have to incur additional costs to seek specialists out of state.
Some patients have started billing doctors who are late just like they do with late patients, so that gave me an idea that I should do the same for how these people compromised my care and are now causing a delay in it because of their actions (not to mention the intentional infliction of emotional distress inflicted by Dr. P. R. M. when he administered his interrogative neuro exam). The guy is clearly a narcissist and scouted me as someone he thought would make an easy victim because he knew I’d been abused as a child through Piedmont’s social history record. Like any predator he saw an opportunity and he took it. He gave a phony (non)apology to the “advocate” to pass on to me, saying “I sincerely apologize that you weren’t satisfied.” Now that’s just gross!!!! Ewww… Why would I be??? He was beating me! Sorry bud, but take that somewhere else. I’m not into that!
What I hadn’t anticipated was just how much of this approach was being adhered to as a “team” by all 4 doctors and just how duplicitous Dr. H was in the organization of my “treatment plan” while in the ER that day and evening. I was not thinking “conspiracy” when I was there, believing that each person was acting separately on their own as individuals, but now after receiving the letters from the “patient advocate” and Dr. H’s manager I now know that’s actually what it was; a conspiracy to discredit me (probably because I was expressing that Emory had moved too slow thus far in getting me to the clinic that could help me, and now I was severely disabled, and I guess they didn’t like dissent). If I’d been the mental case they were trying to paint me as I would have been “paranoid” (in their eyes) and would have picked up on the fact that their approach to me was organized, but to the contrary, I was entirely too trusting. I believed everything Dr. H told me and totally fell for her trick; her phony kindness. I believed she’d prevent anyone from hurting me and the whole time unbeknownst to me she was setting the stage for me to be hurt. Trusting too much (and the wrong people) indicates something else (for which I am arranging an assessment as soon as a particular expert gets on the panel to accept my insurance in about 3 months).
To this day I have a hard time aligning my emotions with my logic when it comes to Dr. H, and that’s scary. The others I can work up a good firm anger at, but her; I just feel profoundly hurt by. What she did was so sneaky that it confused me. Part of me still wants to work it out with her but my logic tells me she’s not a safe person. She hasn’t emailed me again and I guess that’s just as well, although I wish I would have gotten an explanation from her directly (even if she was going to lie) instead of her hiding behind other people like a coward to do her talking for her. She owes me that at the very least.
I realize now that this vulnerability has caused me problems with others I’ve known in the past who were two-faced and in the end totally took advantage of me and tore my heart out. I need to close this gap as soon as possible, but how does one do that and still let the good people in whose kindness is sincere? How does one not become jaded and start questioning everyone’s motives? I naturally tend to take people at face value and I kind of like that about myself, but it has bitten me in the butt a number of times. I sure hope this is something I can do something about and that I’m not forever broken in my ability to tell the difference. Now that all false friends have left and I have a clean slate this is a big thing. I don’t think I can survive another hurt like this. I need to get it right the next time I do trust someone.
Getting back to the topic I brought up earlier about the sign I have on my wall; I am thinking that what I have may be generalized dystonia of some sort and possibly part of a larger syndrome. Last night I watched an interesting speech on Youtube by Dr. Steven Rich, a movement disorder specialist about Atypical Parkinsonian Disorders and found out that in several of those, people have Dysautonomia. He says that in early stages of Multi-system Atrophy for instance, people can have falling within the first 6 months of symptom onset, difficulty getting up from a sitting position, a stiff gate, and symptoms such as rigidity or spasticity, other upper motor neuron signs, and Dysautonomia. Apparently some people are misdiagnosed as having Parkinson’s disease or not diagnosed at all because brain scans can look normal. They don’t always show findings. Often these conditions are made by clinical diagnosis and somebody who knows what they’re doing can put 2 and 2 together from the group of symptoms a patient has.
I’ve been learning also that Dystonia can be primary or secondary just as Dysautonomia can. I’m finding out that my MRI findings may be alot more significant than doctors who read them knew; that C1 and C2 vertebra misalignment and TMJ problems are often indicative of Dystonia and that I may have had that since I was a child in my neck and then as I got older it progressed to the other areas of my body. I’ve noticed for awhile now that my head is often cocked to one side and the sign on my wall slanting upward corresponds with the way my head is positioned. It’s very difficult for me to write straight. I’m always needing to straighten my shirt collar so it is centered on my shoulders because it tends to slide over to one side because my shoulders are tipped one slightly lower than the other. Also tonight I notice that my whole face is off-kilter; jaw, mouth is crooked, nose, and the way my head attaches to my neck is off.
My eyes which I had surgery on a number of years ago because they wander outward are now slipping really badly. I definitely don’t look quite right.
This past year my Dysautonomia has been worse than ever before and I’ve had alot more near fainting spells than I’ve ever had, the colon spasticity didn’t start until 2015 but I’ve been chronically constipated for years, and then finally at Piedmont hospital they documented the blood pressure instability. I faxed those records to my GP that I had to obtain from another department, and they were quite erratic.
Something else odd I’ve noticed happening in the past few weeks is that there are times when my feet get purple or blue for no apparent reason. They don’t feel different, just change color, and it often happens when I’m sitting down on the shower bench. Here are some pictures of what it looks like but they were worse than that before I dried off and was able to get my camera. Also the flash makes it not show up as dark as it actually is, but you can see it somewhat.
In this picture you can see the left foot still pretty purple all over, even down the big toe before it started going back to a more normal color, but the top of the right one had already changed.
Over the past week I’ve had several episodes of urinary urgency which don’t seem related to a bladder infection but most likely are from Dysautonomia. One of them today came on when I was in the kitchen so fast I almost had an accident, but was barely able to get it to stop by squeezing it back upward with all my might and then strangely I didn’t need to go.
My heart was doing some weird things the other night too, as if it was beating very weakly but I was flooded with adrenaline at the same time.
I now have an appointment with a movement disorder specialist out of state but the doctors in the specialty clinic are highly sought after and so I’m going to have to wait 6 months to get in. They are going to put me on the list in case there’s an earlier cancellation just in case. This guy has written a ton of research papers and is currently funded by NIH to do a study on Kinesiology for atypical movement disorders, so he sounds pretty open-minded.
Home healthcare is about to end its certification period in just a few days (the 29th) and my doctor needs to recertify it soon. I have not heard yet that he’s done it. He needs to have a plan in order for it to be covered and I don’t think he knows exactly how to do that but is supposed to be talking with the Care coordinator about it and how it needs to be written.
I need to get some longer-term services in place like the Independent Care Waiver and an agency that does these kinds of things and more like cooking and grocery shopping, but for the Independent Care Waiver I need to have an evaluation for a better wheelchair so I know what specs to put on the application. Shepherd Center does these evaluations with pressure mapping so that you get things just right for your body. The Hoveround I’m using now is OK for inside the house but I really need one that will recline and has a head and neckrest for when I need to go to the doctor and have to be out a few hours.
So far only one person has contributed to GoFundMe. If you would chip in whatever you can afford I would much appreciate it, and also send your friends and family over to my page. My income is so low I’m not even making ends meet and there are more expenses coming up. In addition to this one trip I’m making in 6 months I most likely will be going to the Mayo Clinic which involves about a 2 week stay and from what I understand you have to stay in a hotel and I don’t think that nor meals are covered.
I’m hoping for some good news about something soon! There are so many barriers to things right now sometimes I start to lose hope for the future.
Once home and in relative safety the veil was lifting little by little and the picture beginning to form was terrifying. Could I trust anyone anymore? Could I even trust myself? By Saturday, 2 days later, the initial shock was starting to wear off leaving in its place a sense of deep sadness and foreboding.
The incident left me feeling vulnerable and scared and as much as I tried to joke about it and not let it bother me what happened shook my self-confidence to its very core and there were many nights I cried myself to sleep as flashbacks and intrusive memories; the impact of what had taken place on December 3rd descended upon my consciousness.
It frightened me that I could be so slow to react and I wondered in retrospect why the cobwebs that clogged my brain that day and that evening were so pervasive that they prevented me from demanding to see somebody in a supervisory capacity and insisting they give me the antispasmodic medication that would relieve my suffering.
My advocacy background had prepared me for such obstacles but though I knew what to do I couldn’t access it when these skills were required most so that I could adequately protect myself. It was as though I had a veil over my executive functions and processing had slowed to a crawl and something primal had taken over instead.
Self-preservation hadn’t kicked in and I was left in a state of suspended animation, but I could not for the life of me figure out why. I’d found myself unable to do anything but wait and hope that somebody would see the mismanagement of my case, and intervene on my behalf, as time had stopped and my muscles and thinking dragged like an old car disconnected from it’s gas line in the middle of a busy intersection even though its driver put the pedal to the metal.
Ordinarily I would have asked for someone higher up after an hour of such mistreatment, but for some reason I was frozen at the mercy of those who were supposed to help me yet inexplicably didn’t. I was like a seashell on the water’s edge being dragged in and out by the tide and then away from the safety of dry land.
Though I struggled to communicate, something inside me was drifting further and further out to sea like a buoy cut loose from its anchor and all I knew was that I was in water too deep to retrieve myself. Unable to save myself I did the only thing I could which was to place my hope and trust in Dr. H. who had promised to set things right.
Surely she would tell Emory what she saw happen to me as well as the other regulatory agencies I’d filed formal grievances with, and the police. I hoped that she had filed a report of her own once she had the chance later even though she hadn’t intervened at the time of Dr. M’s interrogative “neuro exam”.
Initially, Emory’s internal advocate, T.J. sounded genuinely supportive but after just two conversations her tone changed from one of empathy to one of skepticism and irritation, and her choice of words became stilted and increasingly legalistic and robotic, lacking in the warmth and human compassion befitting an advocate.
She asked me on about the third phone conversation “How come Dr. H. didn’t intervene?” to which I told her I really didn’t know; that the only reason I could think of was that she felt outranked because she’d made a comment to me that she wasn’t a neurologist as though she lacked the confidence to directly challenge his judgment of the situation.
It was apparent as T asked this of me that the question was really a statement on her part conveying that she didn’t believe me and that she assumed that anytime violence occurred in life if it were in fact real that those in the vicinity would always intervene. I wondered how anyone in the field of advocacy could be so naive as to draw such a black and white conclusion.
There are many reasons why witnesses to crimes don’t intervene; fear of physical retaliation or the threat to one’s career, psychological reasons such as intimidation and lack of confidence in one’s own perceptions and opinions, and the avoidance of conflict.
Then there is the fear of being labeled a “snitch” and being ostracized by one’s peers, and finally, the possibility of collusion. The last scenario seemed unlikely to me given that Dr. H. seemed sincere when she said she believed that I was not faking, and that she encouraged me to continue pursuing further assessment and a diagnosis, and that nothing in her face suggested she was being disingenuous when she told me she was sorry and that she cared about me. She didn’t avert her eyes as she’d said these things, nor did she send any other mixed messages in her tone or body language.
As I struggled to overcome the aversion the traumatic experience caused and began looking for a female neurologist with the support of my GP, the one thought that gave me hope was that when the time came Dr. H. would do the right thing and turn him in for the abuser that he was. It was a little pilot light of trust in mankind that hung on in an otherwise dismal and devastating situation. As long as I knew she would support me I felt things would turn out alright in the end, and justice would be served. Maybe not all doctors would end up hurting me afterall and I’d overcome this; maybe this was just a bump in the road, and sometimes things are darkest just before the dawn. Although I was far from alright, I would be in time, I reasoned.
About a week later I wrote Dr. H. an email On Dec. 10, 2015, at 8:33 PM;
Dear Dr. H,
I still don’t know the whole backstory to why I was treated the way I was last Thursday in the ER, but I hope when you got the chance that you stuck up for me and filed a report on my behalf and I need to know that you will stand up for me now.
There were 4 people in that room that night, 3 women, and the man who committed both physical and psychological abuse on a patient (me) under the guise of doing his job. I do appreciate your being in there, because if you hadn’t been I’m sure he would have gone further.
I’ve had enough neuro exams to know about how much force they’re supposed to use and this went way beyond just heavy-handedness, especially as he went around to my left arm. There is no clinically valid reason to ever beat a patient like that under any circumstances. I was so tired by the time I was being discharged that when you came into the room again I didn’t tell you that his female resident had plopped herself down on my left (the weaker) foot soon after everyone had initially left my room.
I know this happens but it’s highly unethical and can cause patient injury. It was only because of weakness in that part between the ankle and foot that my foot flattened out and no toes were broken, although she sat on it pretty hard.
This is not the kind of thing senior doctors should be teaching their residents and I can only hope that he doesn’t have the chance to do any more damage to patients. I know you probably were dealing with an ethical dilemma that night and maybe during the daytime earlier as well, but no job is ever worth more than your patient.
Not every neurologist is fit to practice medicine and when one goes rogue if he’s allowed free reign nothing good ever comes of it and it ends up hurting everyone in the environment around him.
I guess you’ve read it too by now. He did his best to make sure that I would never have a chance for real, unbiased treatment here at Emory. Somebody who does that is a sadist. I will never be able to look at neurologists the same way after the other night. Good doctors don’t seek to destroy, they build patients up.
Look at the Hippocratic oath; at the most basic tenet. First Do No Harm.
He violated that one on so many different levels.
He violated it by denigrating me because I used the proper terms for my symptoms (as if that in itself was evidence of his whole sick hypothesis), that being a strong, educated woman with good command of the English language was evidence of some sort of mental illness, and viewed my lack of submission as something to be broken instead of viewed as a positive thing denoting self-determination in one’s healthcare.
He violated it when he came into the room wanting to cram that opinion down my throat and when his mind was already made up that he viewed me as less than a credible person, sub-human, and only wanted to command that it be done his way, not caring what I wanted or needed. This is my body. Most doctors now understand that gone are the days when the doctor lays down his decree and the patient meekly follows. Today’s doctors (most of them anyway) understand that in order to have a good doctor/patient relationship it has to be a partnership but in the end it is the patient who has the final say.
He violated it when he used that hammer as an instrument to instill fear and inflict pain instead of the purpose for which it was intended.
He violated it when he made the decision to cover up his physical attack on me with more lies to make the “neuro exam” look like it had a beneficial purpose when in fact it didn’t.
He violated it when he projected his dishonesty onto me, throwing all sorts of the most stigmatizing psych. terms around where he knew others would see them, while leaving out and/or trying to dispute the diagnoses made by other doctors who had way more standing to understand my medical situation. What he did in his charting is libelous and prejudicial, and it is malicious. There is no way that he helped me whatsoever. I do not want and never did ask for his services. Whomever he works for, it sure is not for me.
Who sent him?
I need to know.
I guess that answers the question that I asked you about whether he has a problem with a strong woman. Surely he does.
What happened to the female neurologist who was supposed to see me instead, and why was he wearing a surgical mask. That seemed kind of strange. And also, what is his relationship with Dr. L?
For a moment I asked myself, why me? Why was he so intent on sabotaging my medical care here at Emory? I thought Emory was going to make it right, not make it worse.
If you really want to do the right thing you must tell the authorities what you know about this man and how he factors into all of this. Everything, and don’t minimize it. This is serious. I think in the end if you do this you will be proud of yourself for keeping the profession an honorable one and you just might save patients a lot of needless suffering.
and her response on Dec. 12, 2015 at 8:07 AM;
I am very sorry for your experience in the emergency department last week. I have been informed that the hospital is investigating your concerns, and the patient advocacy group will be getting back with you shortly.
L.H, MD, MPH
Department of Emergency Medicine
Why she couldn’t just reassure me and answer my questions gave me pause, but I figured why buy trouble by worrying about it. I still didn’t know anything negative so maybe that was a sign that she’d finally make good on her promise to make it up to me. Only time would tell.
Then my response on Dec 12, at 4:45 PM;
Thanks so much for your understanding and for the apology.
I want to also let you know that the constant feeling of lower GI urgency I was having did in fact turn out to be spasticity, just as I suspected, because when I got home and took some of the Tizanidine my doctor already prescribes it helped quite a bit, although not having my daytime dose on that Thursday really exacerbated it so it took a few more days of regular dosing before the continuous spasm finally stopped. Normally I think these episodes don’t last as long because I’m taking it regularly.
I’ve found out since all this happened that Piedmont’s definition of “complete” medical record is not really complete, but actually an abstract, so there were some important pieces of data missing. I didn’t have a chance to read my copy until the following day before I realized important things were not included in it and over the next few days had to speak with people in their medical records department who told me some of the important stuff I needed was actually housed in another department. They are working on correcting their part in this fiasco and so far have been very cooperative and apologetic.
I hope to hear good news from Patient Advocacy soon and that you have the courage to stand up against that bully.
Even in a still very male-dominated field women can make a difference by refusing to go along with the “old boy’s club.”
What results is a kinder, gentler world. Maybe if more women specialized in Neurology these sorts of incidents would eventually become a thing of the past.
There was no response to that email. I waited patiently for the internal investigation to be completed while I continued to look into steps I could take to get to the bottom of my medical condition, determined not to let what happened stop me from getting the compassionate and respectful care each patient deserves.
I vacillated between despair and hope day to day, sometimes hour to hour, resting when I needed to, but inspired by the idea that sisterhood is a powerful thing and that it can move mountains. When women work together we are each stronger than we are alone and the glue that holds women together is something that men cannot ever fully understand, as women bring something to the table that cannot be duplicated nor replaced by proxy.
As Emory’s internal investigation neared completion my thoughts turned toward forgiveness and reconciliation; not for Dr. M, as I believed (and still believe) that he is too entrenched in his need to control his environment to change, but the two women doctors, on the other hand, whatever role they’d played in the past, had the capacity to use this as a positive learning experience, especially Dr. H who moving forward had another chance to make good on her promise.
Dr. E.G, the Neurology Resident may have been somewhat naive in following the errant instructions and mentoring of an aggressive senior male doctor. She was young, I theorized, and maybe, just maybe it wasn’t too late for her to come clean and get on the right path. I reassured myself that maybe this story would have a happy ending and that she could change and ultimately grow into a good female neurologist who worked for patients; not against them; not by using trickery, not by viewing them as “less than”, not as an object for her to judge and treat, not as a label but instead understanding her role as being that of a facilitator of healing.
Half-jokingly I thought to myself if she really wanted to make herself useful she could help me regain my strength and function through some sort of project in neuroplasticity through dance.
She could maybe over the next 6 months meet with me twice a week and spot me through some dance moves that could be tailored to my particular movement disorder and (not so jokingly) I could mentor her on what it means to be a doctor and to have that kind of responsibility in her hands without taking advantage, especially where it concerns dealing with neurological problems of the brain.
I am old enough to be her mother and on one level what she did in sitting on my foot was very disrespectful and immature, and in having to face me and learn humility from me as an elder woman would be fitting. She may have rationalized that she’d never see me again so felt there was little risk in doing what she did, but that is harder to do once that patient becomes a real person to a doctor and they have formed a relationship. Then there is more likely to be a sense of accountability for one’s actions.
I could teach her something about what patients are up against and that being a doctor is not all about control and obtaining “compliance” but about an ongoing relationship with the shared goal of seeking and working together on the outcome the patient wants. It cannot be the doctor’s agenda, as each patient owns their own body.
A doctor must never lose sight of the fact that the patient that sits in front of them is a human being first and foremost, and a patient second, and the only real difference between those themselves and their patient is one’s formal education; that the doctor can just as easily become a patient at any point and that they could end up on the other side of the fence.
The doctor must always keep in mind “if the shoe were on the other foot and I were the one who were ill is this how I’d like to be treated?” Follow the Golden Rule and you will be golden.
Then in such a project, she would write and publish in a medical journal a case study paper outlining the course of action that was taken, what she and the patient achieved while working together, and what she learned (not merely clinically, but in terms of her growing understanding of the doctor/patient relationship). My thought originally was for Dr. H to be her supervisor in all of this.
This creative form of conflict resolution sprung forth an idea for a whole program of sensitivity training which could be made a requirement on each rotation for all Residents at Emory and possibly other hospitals as well. I wouldn’t mind directing such a program and speaking in front of groups at hospitals too, as I believe it could be a powerful way to improve the field of medicine.
This idea inspired me and so I even ran it by T.J. and asked who I’d contact at Emory that deals with in-service training, but I received no response.
Last week she wrote me a brief email stating that she had lots of cases and took all cases seriously, and that I would receive a dictated letter on January 6th. I received it and a letter from Emory’s ER Director by snail mail over the weekend and what I learned from the two responses was heartbreaking; the most devastating part of all being that Dr. H. was found to be behind the whole (mis)treatment plan on December 3rd while I was in the ER, and that she had decided unilaterally to deny me the antispasmodic; even the one I am prescribed on a maintenance basis by my GP (which the neurologist at Piedmont hospital also agreed to prescribe).
It was also she whom had called in Dr. M., then covered his ass when interviewed by T.J., Emory’s internal advocate.
I wrote Dr. H. to let her know I knew and how let down I was at her insincerity, and told her it would have been a whole lot better if she’d just done the right thing from the beginning instead of following each mistake with a worse one. This sort of two-faced behavior is something I can never fully wrap my head around. Maybe I’m too idealistic, but I think women really hurt the sisterhood when they do things like that to other women.
This neurologist was a chauvinist and a misogynist of the worst sort and an abuser, and two other women just sat there and allowed him to hurt me and then covered it up. At least Dr. E.G. didn’t really pretend to be an ally (except early on and her thinly veiled disdain was pretty evident from her chiding tone) , but Dr. H. really fooled me as she looked me in the eye and claimed to care. That is the worst betrayal. I really thought she was on my side and Iactually liked her. I was all prepared to forgive her if she’d done the right thing going forward, but again she made the wrong decision.
If she only knew how much an unfair fight it was she’d be so ashamed of herself. Ever since the incident I have gradually become aware of something buried in my past and it all makes sense now why I don’t see the signs when I encounter that kind of deception.
I think I understand now what the neurologists were trying to tell me as a child but didn’t have the heart to name, and why my life has been so hard. In the 60s there was nothing they could have done even if they suspected. I just need to confirm my suspicions before I share it with anyone.