Patients’ Lives Matter

Emory Do The Right Thing - Word Photo DSC_0009

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).

Preparing for the Transfer

22 Kt. Heart

I know nothing stays the same, but if you’re willing to play the game it will be coming around again. So don’t mind if I fall apart, there’s more room in a broken heart…Carly Simon

The day before yesterday was one hell of a day. The appointment with my pulmonologist was to some extent a repeat performance of my last meeting with my GP.

Some may think that because this blog’s focus is on experiences (often bad) in the healthcare system and on patient’s rights that I am just angry, but in truth I’m not. Emotions are part and parcel of the human condition and I don’t shy away from them, but what I feel is more frustration, fear, and grief that although it would be so easy in this situation for those in positions of authority to make things right, instead they make the decision not to at every turn, and in their opposition they prolong physical suffering unnecessarily.

Doctors, when you see signs of disease document them, don’t just have verbal conversations with the patient and not put down a diagnosis if treatment depends on it. If you discover later there were procedural mistakes, then for Godsake amend the record! Untreated disease will continue to tap you on the shoulder until something’s done about it. It waits for noone. Leaving the patient on their own with it to twist in the wind is never the answer. If I seem a bit on edge at times, then this is why.

If you’ve ever had a pet who is injured you will understand. They may bite if you try to pick them up, not out of anger but because they’re protecting the part of their body that hurts. It is just instinct; not intent. Humans as well become quite to the point when there’s little more time to waste. This is nature’s way of motivating us to stay on task to find a way out of peril so that we can survive. When the struggle for self-preservation stops then you really have to worry.

While I am an activist this is not all that I am. Some may view me as a radical but if that’s all they see then I haven’t communicated my point effectively. I’m a mother, an animal lover, an artist, and a writer.  (The broken heart at the top is a component I cast in 22 Kt. gold years ago from a mold of my own design. The line created from it was about regeneration in the face of adversity). Most of all at the core I am soft-hearted and fundamentally believe in the goodness of people and man’s ability to change and transform. I also believe that not everyone’s path is the same, nor should it be, as we are all individuals.

I am more apt to assume that people are with me when they aren’t than the other way around. It is actually because at the core I think positively that I am like this. This is why I often give people in my life maybe more chances than I should.

I try to stay on topic in this blog because the atrocities that take place within healthcare are what I’m trying to shine a light on so that there can be social change. While I am telling my story, this is not just about me, but about so many people who, like me, end up sidelined because of a broken system that leaves little room for tolerance of differences, individual needs, and those who don’t fit the mold of what doctors, insurance regulations, and levels of government who set the laws and rules dictate. There is no manual for the human body and yet there persists the false expectation that there is within the medical field.

The chubby black nurse with lots of tiny braids came in and took my blood pressure, charted a few stats on the computer and then handed me the standard sleep questionnaire to fill out, watching me impatiently.

“He’s running on schedule so I don’t want it to eat up your time. He can’t spend an hour with you” she blurted out rudely.

I narrowed my eyes at her not knowing what brought that on. I never knew how to fill those things out anyway as my sleep/wake pattern is all screwed up from day to day. She told me to average it out, her voice growing ever more impatient.

“Is Z here today?” (another nurse) I asked her.

“No” she replied. “She’s off for a few days.”  I thought back to our last phone conversation and suddenly had an uneasy feeling.  I’d told her what had recently transpired and told her that I was going to need the pulmonologist to take over all the order writing. She understood. There was no mistake about it. She’d been open and empathetic and she was hearing me in a way she hadn’t ever before. When I asked for verification she said “Yes Ma’am” in a way that conveyed that now she understood the gravity of what I was up against.

In the past she’d told me this doctor thought for himself and didn’t think he’d buy into the buzz, but in this last conversation I remember telling her I was glad he was not one to buy into group-speak and that he was the only one left, that I was glad that he at least believed me. On that she didn’t respond to reassure me as she usually had.

I never got a call back from her regarding his answer. Then about 4 or 5 days later (the day he’d refused to do the two referrals) another nurse had responded on his behalf on the Patient Portal. When I’d asked where Z was I was told she’d asked off.

Did she know what awaited me at my upcoming appointment? Perhaps she did and couldn’t bear to be there to watch what was about to unfold and didn’t want to go along with hurting me.

Once the nurse in the office left the room with the clipboard in hand I waited in anticipation that at least he was still with me as he’d indicated on the Patient Portal…or so I hoped.

Medicine is more than the mechanical fixing of bodies. It’s about a partnership between doctor and patient and when one is chronically ill this becomes even more crucial. Often along the way that human aspect gets lost in the process. Above all patients need hope when going through a difficult and long diagnostic process and they need to know that whatever happens their doctor is there for them.

The other day even though he’d refused to write the two referrals I’d sent him the information on (Vanderbilt and the Undiagnosed Diseases Network), I still thought positively that he hadn’t diverged from me. Maybe he just wanted to see me in-person before writing any orders or referrals, I reasoned, or maybe he just felt that it was the GP who should have done this. I tried to believe that there was a reasonable explanation in every way I could.

Not long after the nurse had left he knocked briefly and entered the room.

His face was red at the top of his cheeks just under his eyes. Because I am close with him I knew that was a tell. Even still I powered through, tried my best to ignore it, thinking maybe it was just a temporary bump in the road. I had a smile on my face because I was genuinely happy to see him and I still considered him a confidant until such time as I knew otherwise. I was willing to give him a chance, to hear him out before passing any judgment. Even with some weird vibes I was picking up I couldn’t switch gears that fast and suddenly be unhappy with him. There was a history there. He had helped me in the past, maybe more than any of the doctors at Emory. I had the impression he genuinely cared.

“How are you” he asked looking at me from across the room as he sat down in his chair. He made eye contact, but I just couldn’t block out the distracting reddening in his cheeks and kept looking there instead of his eyes.

“Not good. I’ve been feeling pretty bad with this Dysautonomia not treated for the past several months. I’ve nearly passed out several times in the past two weeks.”

“You’re smiling” he said, nodding. I didn’t exactly know what to say to this or why that was significant to him. I grappled as best as I could to find the words, but failed miserably in fully explaining. I communicate better in writing than I do verbally.

“Well things went well yesterday. The nurse practitioner told me that she didn’t think I was nuts, and apparently Dr. V validated my Dysautonomia, so that’s progress.”

“You’re smiling” he said again, a little louder this time, almost cutting into the end of my sentence. I wanted to ask him what his point was but I didn’t know how. It was as though my brain stopped for a moment. I could think it but the words wouldn’t come out of my mouth. In the time I’ve known him I have grown very attached to him and in the past he has always been willing to do whatever he could to help me. All I had to do was ask. I told him just the other day on the Patient Portal how much I appreciated that, and suddenly as if the rug were pulled out from under me all that was gone.

I tried to push the gnawing insecurities aside in favor of logic. How could a strongly positive doctor/patient relationship go from 100 to zero in just a week’s time, I wondered? As I sat there across from him something didn’t feel quite the same.

“What is your understanding of the situation right now?” he asked. “Do you think Neurology is moving forward in getting the answers?” It was one of those statements masquerading as a question. I could feel it yet was unsure exactly what he was going to say although I grasped that it wasn’t good.

“Well it’s too early to know for sure. I just started with them, but Dr. V. definitely picked up on something of the underlying condition. She just isn’t sure what it is yet. She’s only seen me once, so hasn’t even had time to investigate very far before going on maternity leave.”

The pulmonologist shifted in his chair from side to side, not a good sign. “She was hanging her hopes on it being the Sarcoidosis.”

“Yes, and it turned out not to be that” I answered the question for him. The red in his cheeks continued to spread outward. “The Gallium Scan was clean” he said with almost an eeriness in his voice.

That meant it wasn’t in acute flair but he seemed to have a much more ominous take on it.

The significance for him seemed to take on an almost supernatural quality to it and I could tell it scared him. We live in the bible belt here in Georgia and one always has to consider that doctors in this part of the country may read in a religious significance to explain things that as of yet are medically unexplainable. That is yet another variable that can and does interfere with trust within the doctor/patient relationship; the good vs evil dichotomy.

“It was the inconsistency in the exam that concerned me” said the Pulmonologist, his cheeks reddening further. At this point he was looking kind of ill himself. I knew what he was thinking because doctors are trained that way.

I felt the need to reassure him that I had not been taken over by some strange evil force and that there was and is a reasonable explanation, that we just needed to find out what that is. There is a confounding variable neither he nor Dr. V were taking into account which elicits inconsistency in an exam, but the growing sense of mistrust and feeling of utter futility held me back from telling him what it was. I opted for the simpler of explanations.

“This is just the beginning”, I continued. She’s just started with me. Sometimes it can take as many as 6-8 years for patients to be diagnosed. I sure hope it won’t take that long for me, but the point is that alot of people go through this. It’s not that uncommon for things like that to come out negative or inconsistent, but at least they can start by treating the Dysautonomia since they know that the Saline helped when I was at Piedmont. That would be a start.”

It was all he could do to stay put in his chair. He seemed to be grappling within himself pulling to one side, then the other. I could imagine opposing dialogue going on in his head.

“You keep coming up with that word; Dysautonomia!” his speech accelerating and growing in urgency. “There’s no evidence of Dysautonomia.” (pregnant pause) “that’s your perception. That came from you. She said by patient report.”

“What do you mean no evidence? “It came from Piedmont” I replied. “Didn’t you see the BP stats that were entered into the electronic records system? My blood pressure was all over the map for 11 days, measuring it 6 times a day!”

“That could be anything. A cardiologist would have to determine what that is….and you need to consider that this could also be…psychological. I would recommend seeing a Psychiatrist and a Cardiologist.”

“Well it sure isn’t in my head. Believe me, I went that route first, as I had problems on my left side a number of years ago. The therapist suggested I get it medically checked out because she didn’t think it was psychological.”

“It can reoccur.” he replied ignoring the fact that I’d said it had been ruled out.

“Blood pooling in my feet? Pictures I sent Dr. B. on the portal.”

There’s no evidence of Dysautonomia. That’s your perception. They have to do tests for that!” at this point seeing he was losing this argument but sticking to his story so as not to lose face.

“They should have done that testing 4 months ago. I’ve been telling people this since I was discharged from Piedmont in November. The doctor there had a conversation with me about this. It didn’t come from me, it came from him. He just didn’t document it and I didn’t know that until I got the records later. I believe it’s secondary and that it and the movement disorder are all part of the same syndrome. They need to find the underlying condition.”

“If there is one. Why not see a Cardiologist?”, he said.

“I could. That’s another reason to go to Vanderbilt. They have specialists there and I’m sure they have Cardiologists there as well as Neurologists.”

“You could see one here… or at any place locally. You don’t need to go out of town for that.” I wondered why he was so wedded to the idea that I stay here in town for such an evaluation.

“The thing is if I went to just any Cardiologist they may be too general to recognize this. Many Cardiologists are generalists and they have many other heart related disorders to focus on. I need an expert who knows what to look for.”

“I would recommend doing it here.” I’m sure he would, I thought, beginning to feel as though he wanted to control the situation. Odd, given the fact that just a few days previously he’d taken a hands-off approach.

“Then my chronic constipation, the fact that I’m thirsty constantly, how can you say there’s no evidence?”

“That could be dehydration. Dysautonomia is extremely rare statistically.” He seemed genuinely afraid and holding onto this denial for dear life, like a security blanket, although I wasn’t sure why. The whole time we’d been talking I was drinking water and sucking on ice cubes.

“Well why am I dehydrated? As you can see I’m drinking ice water constantly. I have a cup with me at all times and yet I’m still thirsty.” He was out of excuses and just looked at me seemingly frustrated. He asked about Dr. B. and I said “He’s gone.”

“Gone? What do you mean?”

“I mean out of the picture; gone” I did not elaborate.

“He’s not your primary anymore?”

“No, he was doing me more harm than good anyway. You see, nothing was moving. My treatment was going nowhere. I tried to tell him but he wouldn’t listen. I’ve been untreated for almost 4 months now and I can’t wait much longer. It’s getting worse.”

“Untreated for what?

Dysautonomia.”

“And you really think Neurology is helping you?”

“According to the Nurse Practitioner she is supposed to be good and I was told she thinks outside the box. I figured I’d give her a chance.”

“OK then, I’ll take a back seat to Neurology then and just follow what they’re doing with you.” he replied seeming somewhat offended or hurt, I couldn’t tell exactly which. “I still think you should see a psychiatrist” he threw in for good measure.

“I just don’t want to cloud the issue. I want this looked at on it’s merits. There are several problems in seeing a psychiatrist. Every specialty tends to look for what they specialize in and they can’t bill insurance for situational problems so that motivates them to fudge and give you a psych diagnosis when you really don’t meet the criteria. Would it make any difference at all if a psychiatrist wrote a letter saying that what is going on with me is not psychiatric but medical?”

“Yes” he said emphatically, “It would help alot”. Somehow his words rang hollow as soon as they’d been spoken. I found it hard to believe that he could ever go back to the way things were before. A line had been crossed and another rung of trust broken. Even if he could go back I couldn’t. It scared me that he could so easily go from supporting me 100% to being so determined not to support me. It was like the air let out of a balloon. Knowing that deep down he was not trying to rule it out but rule it in was what hurt most of all. The way he looked at me just killed me; a mix of irritation, amusement, and pity as though I had wasted his time.

“I feel like you don’t believe me” I said. I wasn’t smiling now.

His face clouded over and he looked through me rather than at me. “Ms. Carlington” he said with a forced new formality “I need to move on” he stated dismissively looking somewhere to my right, then avoiding my eyes and looking to my left.

The first level I perceived right away (move on as in to his next patient), but then I picked up something on a deeper level.

He was officially uninvesting himself in me and though I was still technically his patient I’d clearly been relegated to the cutting-room floor.

A thousand pieces of paper wouldn’t change anything now with his resolute mind-set and knowing, that psych is a soft science and based more on individual clinical opinion than provable fact, to take that particular piece of advice and gamble with my future could put the last nail in my coffin.

 As both of us exited, he to the left, and me to the right he called back over his shoulder that I should really get a new Primary Care physician to coordinate all these specialists and I told him that with managed care and heavy caseloads I really don’t know if one would, so I wasn’t in any great hurry to do that. It didn’t work out for me the last time. He said that’s what they’re supposed to do. Yes, I thought, they are supposed to.

I went to the front checkout desk where the young receptionist with the long wavy black hair and black-rimmed glasses greeted me with their customary “Did you have a nice visit?”

“No, not so much. Not this time. I feel a bit uneasy.” She got on the phone to ask the doctor when to schedule me for my next appointment.

“Six Months” she said as she turned toward me. I winced. (It was usually more like 2-3), but still feeling that sense of futility I didn’t ask her to make it earlier, only asked if I could if I needed to, and she said yes, that he was here 5 days a week and if need be it wouldn’t be hard to get an appointment should something come up.

Yesterday Dr. V finally responded through her Nurse Practitioner, but since she’d not heard of the IV Saline treatment she told her she wouldn’t authorize her to write the order “at this time”.  None of the other items on my list of priorities (other than the med refills) had been addressed, so I wrote back and asked if she had authorized her writing the referral to Vanderbilt, and provided her several pieces of information about the treatment and contact info for two specialists familiar with it.

Yesterday I got the name of a guy at another specialty clinic out of state and am waiting to hear back, as he is out for the week. The office is supposed to call when he returns. All the pre-registration was taken care of over the phone. If I don’t see some action out of Emory Neurology soon I’ll go that route, as he seems to have diagnosed lots of people who had the same experience I’m having now and there you don’t have to have a referral. As gut-wrenching as it is to be losing doctors I’ve known for years locally I wonder if maybe, just maybe with doors closing at Emory, another window is about to open.

Dare I Hope?

Hand drawing back branch

As Spring brings new buds after the thaw from the harshest of Winters sometimes one finds unexpected reprieve even at the 11th hour; maybe even because of it. Although I don’t want to jinx it today’s visit to Emory General Neurology was more hopeful than I’d expected. I’d prepared a list of things I needed help with, placed it in my soft briefcase, and after dragging myself out of bed having barely slept, back and core aching, dark circles under my eyes, feeling gutted and weak I forged ahead not knowing what lay ahead. 7 AM is not my best time of morning and I was holding it together by a thread. As I arrived on the 5th floor I was already starting to feel worse and sucked on ice cubes from a large styrofoam cup with a plastic lid on it in a rather ineffective attempt to settle my stomach. After about 20 minutes in the waiting room a nurse in a light green scrub outfit, red hair parted slightly to the side and flipped upward called me to come back. She had a Hispanic accent, so at first I thought she was the Nurse Practitioner  although the name of the woman I was to see sounded quite WASPY. I didn’t quite get a good look at her name tag as she sat at the small wraparound desk in front of her computer terminal. She asked me the usual mundane questions about my medications, weight and height and took my bloodpressure which as is usually the case at Emory appointments runs somewhat high. It seemed as though they were well versed as to what I was asking before I ever arrived and although it was a little unnerving, it didn’t appear that they were at all viewing it negatively. I wondered if they’d had a meeting earlier that morning. The nurse assured me that I was in good hands and that this was a “good team”. She informed me that the Nurse Practitioner would be in shortly.

In just a few minutes another woman came in. She had dark brown hair a little longer than shoulder length, but as bad as I was feeling I didn’t register much more detail than that. She introduced herself as the Nurse Practitioner and explained that Dr. V. was going to advise her and that she didn’t have a clear-cut idea about where to go from here. She told me that she could write orders but had to check with Dr. V. first although she was covering for her.

It was unclear whether she’d read the scan or if any of the doctors had but at that point I really didn’t care since it was the Dysautonomia that was most pressing. I handed her my succinct list which she was grateful for and she looked it over, commenting on several of the items favorably.

This was very different from my recent experiences with Dr. B. I felt comfortable with her enough to tell her what happened in the ER and told her they treated me like I was nuts, and what had transpired since, including the dumping by Dr. B after he failed to treat my Dysautonomia for so many months and she didn’t bat an eye.

“I’m not nuts; I swear” I said preemptively, but no opposition came.

“I don’t believe you are either” she responded looking me squarely in the eye. She seemed warm and genuinely open. She went on to tell me she’d heard alot about the Undiagnosed Diseases Network and that many of Dr. V’s patients asked for referrals there. Apparently Dr. V. liked to see patients 3 times before referring them so that she was familiar enough to write a good letter but that given my difficulty getting the help I needed until way late she would ask if there was enough in the file and from my interview with her (the Nurse Practitioner) to make the referral sooner. This was more like it! Finally, someone who really wanted to make some headway!

I told her about how my adoption yielded no medical history and that there was no documentation of my ever having been born in the State of Pennsylvania, how I’d had strange symptoms for years ever since early childhood and that I’d needed genetic testing for a long time.

I went on to tell her that it had mainly been brushed off. She thought my line of thinking made perfect sense and was intrigued by the possibility that I might have some genetic form of Dystonia or that this may be secondary to a larger genetic syndrome.

“I don’t know what so many doctors have against acknowledging Dysautonomia. It seems like this dirty little secret that nobody wants to touch with a ten foot pole.” She smiled in agreement.

“I don’t know what it is that makes people view it any differently than any other disorder.”

“I Don’t know either” I said. “It seems like the doctor at Piedmont who had that unofficial conversation with me at my bedside didn’t want to go on record for the diagnosis nor the IV Saline treatment, but when I got home I discovered there are quite a few doctors doing that for the condition. It’s really not that controversial.”

“Really Dr. V. is into controversial!”

“Really?” I had to hear this.

“Yes”, she continued. “She really likes that.”

“So I have the right doctor” I queried.

“Yes.” 

“I really hope she’ll do it because I’m absolutely miserable going for almost 4 months untreated. I don’t know how much more I can take.”

“I’m sorry”, she said looking a little sad.

The nurse practitioner asked a few details about my abnormal movements and noted these, then said she’d call Dr. V. at home and see if she could get permission to write these orders and that she’d get back to me once she got an answer. I got her card and headed out into the waiting room to call my transportation service. Then I went downstairs to wait by the front entrance. After sitting there awhile I got really cold and the near fainting spells hit me like a ton of bricks. My core ached from the spine inward and increased in intensity. I doubled over in pain and tried holding my head down but that wasn’t very effective and I began seeing stars and getting dizzy. I figured I’d better go back upstairs because if I fell and passed out in that downstairs lobby alone it could be bad.

Heading back upstairs I went to the front desk and asked if there were some coffee as there was in some of the other doctor’s offices. The receptionist said no, but that she might have some in the back she could bring me. I needed some sort of external heat source to warm myself up. As she went to bring me some coffee I lay down on the one couch they had in the waiting room and put my feet up on the armrest. Finally the faint feeling started to subside but the hot and cold spells continued to alternate every few minutes. I managed to drink the coffee but still felt very nauseated.

It took an inordinately long time to be picked up to go home, and even longer to be picked back up from the pharmacy after refilling my prescriptions.

Once home and situated in bed I called Daria. The woman answering at the front desk asked who it was and after giving my name I had the feeling that was why she was unavailable. I was told hastily that she’d call me back as soon as she could, but it was implied it wouldn’t be today.

I hope after all this that she isn’t tired of all the doctors not having followed through and that she’s not bored with me already just when I might be getting this treatment successfully.

I sent the nurse practitioner an email to follow up and send her the photos of blood pooling in my feet and a few other details I’d forgotten when I was in the office as well as filling her in on the fact that my condition has continued to get worse. Hopefully she called her today and didn’t wait, as I’ve waited too long already.

Tomorrow I have an appointment with my pulmonologist. I might have him do liver enzyme blood work, as it always seems to be elevated again when I feel this way.

 

Good News/Bad News, and Nearly Fainting

Ramp to front door

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 that I do best 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!

 

That’s Their Story and They’re Sticking To It; Emory Continues to Stonewall

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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.

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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.

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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.

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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.

 

 

The Dark Man

Shadow silhouette of a figure

Upon returning home on the evening of November 28th I was greeted by the strong stench of dog feces and urine coming from the kitchen. I had been under the impression that my son’s girlfriend’s father had been keeping Carmella, my dog, in Athens at a local dog spa and that she was being well cared for. I found her with a small dish of cheap dogfood  and what seemed to be a week’s worth of mess underneath the kitchen table. Near the garage door and laundry room was some bloody diarrhea that was nearly liquid.

Cleaning all this up while sitting in my wheelchair proved nearly impossible but I couldn’t just leave it there, so I did my best to stand and in doing so fell, almost landing in a puddle of urine. The smell was overpowering even after my best effort at cleaning, as the linoleum is porous unlike the type they used to make and absorbs like a sponge.

I was relieved to be home in my own bed, but the silence was deafening after the steady hum of conversation in the hallway at the hospital.

Sleeping was fitful and unrestorative between the residual odor emanating from the kitchen and my autonomic instability. 

Wires got crossed and home health didn’t show up until sometime later the following week, as apparently they had not been notified by the hospital that I’d been discharged.

By Thursday, December 3rd I was in a bad way. The night had been one of the worst since I’d been discharged from Piedmont and I called the home health agency as soon as they were open to ask that they send a nurse out, as I was feeling really faint along with nausea and the feeling that I was going to lose all bowel control at any moment. The Care Coordinator, Daria wasn’t in and somebody else was working that day in her place, and I was told they couldn’t get a nurse to my house on such short notice. The best this woman could advise me to do was to go to the Emergency room. I really didn’t want to but  didn’t know what else to do. The feeling was becoming intolerable and the woman on the other end of the phone was telling me I really should never have been discharged.

Reluctantly I dialed 911. Not long after, a black man and woman arrived. I was too ill even to get into my wheelchair so yelled for them to come in my back door. They finally heard me and entered the house that way.

I told them to take me to Emory since that was where my doctors worked, and I figured maybe I would give the place another chance even though their clinics had taken way too long to get me routed to the right care. I recounted how things had been moving at a snail’s pace, how surreal things had become on the Patient Portal with several doctors watching intently but none making a move to intervene, and how my GP had seemed at a loss, resorting to prayer now and saying very little.

The female paramedic seemed perplexed. “After that you want to go to Emory?”

“Yes, and don’t divert no matter what. Please hurry. I’m not feeling well at all” I responded.

 I’d tried going to another hospital and they’d spat me back to Emory anyway, so I thought maybe it was best that I have them follow through. At least my doctors were there and the ER could let them know where I was. Maybe, I thought, this nightmare was finally coming to an end. Little did I know, things were about to get alot worse.

The male paramedic began proselytizing about Jesus Christ and asking if and how I were “saved”, very inappropriate, but nevertheless I told him that given nothing else was working I’d tried that too and that wasn’t anymore effective than anything else. He went on about how you had to ask forgiveness and pray this way or that way in order to “be healed”. I thought this really must be hell I was in as the female was driving as though it were a Sunday and stopping at each light. It seemed as though I’d stumbled onto an alternate reality, or down some strange rabbit hole. I could hardly believe this was happening. I felt as though I were going to hurl and crap my pants all at the same time as the two paramedics immersed in their own world talked about eating pizza.

After what felt like ages we arrived at Emory’s ER. They took their time getting the gurney out of the back of the truck and wheeled me into the entrance.

After signing some paperwork and having blood drawn through what felt like a dull shovel crammed into my arm (an IV) by a middle-aged black woman with shoulder-length hair began making conversation with me. Other than the painful IV she was pleasant and made some small-talk noticing I had a birthday coming up and asked what I wished for,

“A new body” I half-way joked.

“Be careful what you wish for”, she replied cryptically. 

I quietly wondered why everything had to be assumed for the worst rather than for better.

Soon after she left, Dr. L.H. entered the room followed by a group of others. She was young with dark brown hair parted in the middle and an engaging personality. As the others milled around she positioned herself by the foot of my bed on the left side and asked what had been happening that brought me to the hospital. I struggled at first to get out the words but then they just sort of poured out of me, all the symptoms that had developed, how they accelerated recently, and how Emory seemed to be asleep at the wheel as I got more and more disabled until I could hardly care for myself anymore. 

“I’m so sorry” she replied. “We’re going to take care of you. I promise. We’re going to make this right. If there’s anything you need, food, water, or anything, just ask.” Her expression looked sincere, so I believed her.

I asked to speak with the social worker but she wouldn’t be in until around 10:00 AM. The woman filling in at the home healthcare agency had told me to have their social worker call them so she could advocate for me. Someone had put my handbag out of reach, I don’t remember when, but I couldn’t get to my laptop or a phone to call anyone, and I was so tired and agonized by the lower GI symptoms I was experiencing it was hard to process all that was going on. I needed to believe things were going to work out finally. They had to. I didn’t know how much longer I could take it.

It was nearly 2:00 PM before I was able to get the social worker and I asked for some food and medication for spasticity. She went to ask on my behalf and after she left it was quite awhile before a young, slim black nurse walked in with a pill in a small cup. I asked if it was Tizanidine and she told me no, (giving me a generic name I did not recognize), then when asked told me that it was some sort of Benzodiazipine. I gave her a  strange look and said I didn’t think that was an appropriate drug for my symptoms. She finally admitted it was Valium and I said, “No that that wasn’t going to address spasticity in my colon nor the spasticity I was having in the left instep of my foot. 

She told me that I couldn’t get an antispasmodic because those were “neurological medications” and had to be authorized by a neurologist. I wasn’t buying it. Never had I had such an experience in any ER in my life and I had an inkling something strange was going on although I didn’t yet know quite what. I asked to speak with the patient representative and she instead got the social worker again, who while she was understanding and admitted that I wasn’t being treated correctly, seemed to feel that her hands were tied, and eventually trailed off in frustration.

The young nurse returned with the Valium and insisted it would address the spasticity as it had muscle relaxant properties. Too tired to put up much of a fight I took it as it was all that was available at the moment. It didn’t help and I was so miserable with the constant fecal urgency that I felt like crying but my eyes were dry and I couldn’t shed a tear. An almost primal wail came out of me for hours until I fell asleep in utter exhaustion. No food came even after I called the nurse several times. She came in and asked whether the Valium helped and I told her no, that all it had done was put me to sleep but the spasticity remained. I asked again for an antispasmodic. Again she refused. Putting her hand defiantly on one hip she waggled her head and shoulder to try to defend her position, stating that although it might have put me to sleep it was not for sleep and that it does address spasticity. I told her that if that were so that only would it do so indirectly and that there are better medications for that; Tizanidine or Baclofen.

She left the room in a huff rolling her eyes and didn’t return for some time. No food was forthcoming but after ringing the buzzer about 3 times over a period of an hour or so more I finally got some water from another nurse or aid.

Sometime in the late afternoon a female resident, E.G., came to my bedside. She had a very pale face with dark circles and deep set eyes, almost  cadaver-like in appearance. At first she seemed cheerful as she told me she was doing her neurology rotation and somehow we got on the subject of my son (I can’t remember how), but I told her he had a D-Net tumor. She didn’t know what that was so I explained it was a benign clump of excess neural tissue that caused daily seizures, and said she would eventually learn that if she was planning on going into neurology. Then she took out her tools and decided she was going to do a neuro exam on me. This was where things started getting a little weird. At the time I really  didn’t know what to make of it but she started testing my reflexes in the right arm saying “You know the drill, you know the drill”, in an almost cursory yet condescending way. I remember thinking I wish they’d leave me alone already and practice on somebody else so I could go to sleep.

Then almost immediately after she was through doing that, in came a male attending ER doctor, T.T.J., MD (internal medicine) a stocky man with wavy brown hair tied back in a small poneytail who did his own neuro exam. He was glib and dismissive and seemed quite pleased with himself and couldn’t seem to understand why my not being able to bathe myself and care for myself would be bothersome to me, writing off my concern as “anxiety”, and attributing my chronic long-term constipation to the Tramadol although I’ve had it alot longer than I’ve been on the medication. I told him directly that I wouldn’t be minimizing this if I were him.

After he’d left the room I spoke with the social worker again, telling her I didn’t feel that this guy was being respectful and asked her to speak with my home healthcare agency. Again I asked for something to eat. She said she’d pass it on. I told her that with all that was going on and all I’d been through I didn’t know who to trust anymore. She told me I could trust Dr. H.

Finally Dr. H. came back in and told me I was going to be admitted at least overnight to their bridge unit, and that a female neurologist was going to be assigned to me. As she leaned her elbows on the bars of the gurney she said “We do care about you.” I could believe that she did but the royal “We?”, not so much. I was a long way from feeling reassured. Fighting through the pain and fatigue I was trying to make sense of it all.

After she left the room I waited for the female neurologist she spoke of to arrive but she never did. To this day I do not know why.

When Dr. H. came back she told me there’d been a change of plans and that there was going to be a different neurologist seeing me instead, a male whom she described as “an old traditionalist”. Just then a precarious feeling came over me. That didn’t sound like a good thing. I asked her if he had a problem with a strong woman and she told me no, that she was a strong woman.

Soon a transporter came with a wheelchair to take me to the unit. Once I was assigned to a room a nurse came in and took my vital signs. My blood pressure was somewhat high. I asked her to help me plug in my laptop so that I could notify some people as to what was happening. Once she left I found I was unable to connect to the network.

Around 6 or 7 PM, the neurologist Dr. P.R.M entered my room at Emory Hospital wearing a surgical mask (which I thought was bizarre anyway), accompanied by the same female resident who had seen me earlier.

Instantly I had a visceral feeling of dread. He looked tightly wound, with a mostly bald but oddly muscular head. Clenching his jaw seemed to isolate one muscle in his head at a time tensing and releasing in a strange pattern. He reminded me of a snorting angry bull on a hair trigger pawing at the dirt. He neither smiled nor attempted any niceties in his introduction.

Almost immediately he asked me rhetorically if I would turn off my laptop, and then actually reached over and closed it himself before turning off the overhead light and looking closely into my eyes with his pen light.

Dr. H. came into the room to the right of my bed. Dr. M. asked me some pointed questions about what I understood about why I was there, and asked me my symptoms. I replied that I had been in the process of work-up for a neuromuscular disease, possibly ALS or some sort of movement disorder and told him I had progressive weakness, fasciculations, myoclonus, spasticity, extreme fatigue, and had fallen a number of times back in August, and had been declining more quickly over the past month or so. That day and for the past few weeks I’d been having dysautonomic symptoms; i.e., nausea, faintness, hot and cold temperature dysregulation, gastric upset and constant spasm in my lower GI tract that felt like I had to poop urgently all day long. I explained that I had also had sharp muscle spasms in the instep of my left foot earlier in the day.

 When I used the proper names for my symptoms he made a rather pointed comment; “You know a lot of medical terms.” His tone sounded almost accusatory as though that threatened him in some way. I told him that there’s a whole new generation of patients out there who are highly educated and proactive, and that I was raised around science, as my father was a cell biologist, and since I tire easily I’d rather use 1 word to describe 4 or 5 as long as he and I both understand what it means. I explained that I do what I can to conserve my energy.

 Then he physically abused me under the guise of a neuro exam (started off pretty rough but on the border) testing my reflexes on some areas of the legs and then on my right arm, but when he got to the left arm he lifted his triangular rubber hammer above his head and taking full swings beat me with all his might several times quickly. When I cringed and yelled “Ouch!” he did not apologize. I have had neuro exams many times before and never in my life had I been hit this hard by any doctor; neurologist or otherwise. There was no clinical reason for that amount of force. It was obvious that he intended to intimidate me and inflict pain in such a way that it would not leave a bruise, in the pretense of doing his job.

 He had access to sensitive medical history information in my chart from a recent hospitalization at Piedmont hospital where I had been having tests and being worked up for ALS, admitted he’d read the whole thing, then lied to me that my EMG was completely clean when in fact it wasn’t, there were some findings not yet elucidated, and then proceeded to use other personal history information against me from the other hospital’s record about abuse I suffered as a child in a malicious way. He said “You had a mental health consult there, didn’t you. What did she tell you?” he again poked in a distinctly interrogative tone.

(I had merely spoken with a counselor about grief I was having about the loss of my function in the past few months). His motive was clearly to discredit the neuromuscular symptoms I’ve been having which have progressed to the level that I need help at home with daily living.  I was in shock and disbelief that a total stranger would come into my hospital room so hell-bent to attack me this way, especially a doctor who was supposed to be there to help me, and I couldn’t understand why all the vehemence. I told him briefly that the counselor had told me that she didn’t feel I had a psychiatric problem and agreed with me that it was entirely situational, and said that it was understandable that I was overwhelmed considering what was happening to my body. (I understand they cannot bill for grief so have to put something diagnostic down). Dr. M. used this in a malicious way to try to discredit my whole disease process that was currently being worked up, and these were just gross tests, just the beginning of the diagnostic process.

 His “professional opinion” (even after I had Babinski sign in both feet taken lying down and also with legs hanging over the side of the bed) was that I had “hysterical conversion disorder” and he told me that he had been “called in” (I don’t know by whom) for his “opinion” and therefore had to chart something about it.

 I told him I don’t know how he could jump to such a conclusion and that he better think long and hard about that because this could bias other doctors and result in me not getting the real treatment that could help my disease whatever it is. I said just because that was his opinion didn’t make it true and that a specialist might find the cause of my symptoms and I did not want him to poison the well with this biased opinion.

 I told him that there were well documented problems that indicated something neurologically wrong in the CNS such as Biot’s breathing, (similar to Cheynes-Stokes), and that my sleep studies were very abnormal (slow waves while awake, sleep myoclonus, etc.), and that many times I am awakened by fasciculations in my toes, and how on earth could my mind conjure up that when I was not even awake at the onset. He paused for a moment unable to counter that argument.

 It was quite clear by then he had his own agenda and did not have my best interest at heart, and what he did violates the Hippocratic Oath on a number of levels. He got defensive when I stood up for myself and told me, “Ms. Carlington, if you don’t want to discuss it there is no point continuing the conversation”. I reminded him once more that I did not want even a hint of this in my records. I told him that if he wanted to put in that he didn’t find anything that was one thing, but to enter such conjecture as he was proposing would be irresponsible. Pretty much everyone in the medical field knows what a stigma such a diagnosis holds and how damaging it can be to one’s credibility. When he shook my hand toward the end of the conversation it was a “dead fish” handshake and there was not an ounce of empathy in his demeanor.  I told him “I don’t mean to offend you” but no thanks. This was not helpful.

 He said there were no other tests he could think of to do and said that the neuromuscular specialist, Dr. G. didn’t come to the hospital, so I might as well be discharged, and said he’d refer me to him if I wanted. I said why not call in other specialists in the meantime and he asked me what specialists could be called in. I was exhausted and had been in the ER since morning with nothing to eat all day and no medication but a Valium to treat my spasticity so needless to say it didn’t occur to me to ask about a gastroenterology consult, but that shouldn’t have been incumbent upon me to initiate.

 Just a few minutes later, he sent his female resident, E.G. into my room, upon which she plopped her butt down squarely on my left foot covered by my blankets which was the one with the most weakness and dysfunction in it. The toes were pointing up, so that could have broken some bones if the muscles hadn’t been as weak as they are at the point between the foot and ankle and it flattened down. Again I yelled “Ouch!” as I do have sensation in it, so of course it hurt. She apologized as though it were an accident. There was a chair on the other side of my bed she could have sat in instead. It was not necessary to sit at the foot of my bed. This is a little known trick to see if you’re “faking it” but is considered highly unethical. This is NOT what residents are supposed to be taught as acceptable practice and places patients at risk of injury.

She made a few statements that I didn’t process because of the state of shock I was in. All I could think to do was to ask her to get Dr. H., but once she’d left the room and Dr. H. came back in I couldn’t bring myself to tell her what the resident had done because even though I felt as though we might even have been friends if we’d met under different circumstances the events of the day had happened on her watch and she hadn’t intervened, so as much as I wanted to I didn’t even know whether I could trust her 100%.

She sat in the chair opposite me, and looking back at her my eyes welled up with tears that wouldn’t fall. I was so tired, so existentially tired. I told her this made me sad, that this experience had seriously damaged my trust in Emory and in doctors, that I thought she was going to make it right, not make it worse. I told her that he was wrong and that I had nothing at all to gain, but everything to lose, that I had lost the one thing I valued most in myself all my life; my physical strength.

She told me that she believed me and saw me as an honest person of integrity, and that I should continue to pursue the source of these symptoms.

I told her that it was so unfair for him to imply that a patient was either faking or nuts just because he didn’t know the answer and I recounted the true story of a woman with chronic Lyme disease whose family wouldn’t believe her and was too poor to get treatment from the right specialists, that she’d begged for someone to help her get the treatment she needed. It never came, and the day after posting a video about her plight she walked in front of a train and committed suicide, and that I’d spoken with one of my doctors about what I wanted to be done if my suffering were to become unbearable with no relief in sight.

She responded that if I ever got to that point to come back to the ER.

“But then I’d have a record”. And anyway, why would I do that if I’d reached such a point that I wanted out? Just to be forced to endure that suffering longer? No, I thought. If I ever get to that point I will make the final decision with dignity. What I’d just endured was not dignity but humiliation and degradation. The whole point of Euthanasia is to end the suffering, not to prolong it.

Yes, that’s true,” she answered, knowing that my having a “mental health” record was what he wanted and I would never give him the satisfaction.

 I have an advocacy background (also documented in those records he used against me), so I’m able to recognize the signs of abuse and/or neglect when I encounter them, and what happened that day was highly unethical and out-and-out abusive.

When dinner finally came that night I couldn’t eat.

I had to call out to get the nurse because M had moved the call button to the countertop where I couldn’t reach it. The nurse came in and found it, shaking her head asking how it got over there.

“It was that damned neurologist”, I answered.

As I was given my discharge papers she started to hand me another Valium. I waved it away telling her I tried it earlier in the day and it didn’t help. Then she was going to hand me a prescription and I told her to keep it, as it was pointless. I would just take my Tizanidine when I got home later. I’m not sure why she was so intent on giving it to me; because she believed his take on things, or whether she thought after dealing with him and his abuse I was going to need a tranquilizer. Either way, I felt I was on plenty of medication already and didn’t need one more. Besides, there was no need to add to the stigma he was trying to make stick.

 This sadistic man is not only a danger to me physically and to my relationships with other doctors on whom my life may depend, but also a danger to other patients as well.

 When I obtained the ER record of his documentation almost a week later it was even worse than he had implied. This went way beyond rudeness or mere difference of opinion, but rose (or should I say sank) to the level of harassment and sabotage. He went way beyond the scope of his specialty and peppered it with psychiatric terms he had no business using that were the most stigmatizing mental health diagnoses he could think of, knowing that Emory doesn’t remove inaccurate, even libelous information but only puts a notation by it stating it’s incorrect. I will be utilizing their form for this, but, as his defamatory narrative will still be visible, and could bias other doctors, in perpetuity, this cannot be allowed to stand.

 In addition, he went so far as to question in the report the diagnostic process used by my other doctors who had diagnosed Sleep Myoclonus and Sarcoidosis and he implied it was all fake.

 He did nothing that would be beneficial to me as a patient, and his involvement was clearly designed to blacklist me from every doctor but those he had connections with in an attempt to manipulate me into confirming his “assessment”. He had gone too far by beating me under the guise of his “neuro exam” even though he’d admitted that he’d already formed his opinion prior to that based on the records from Piedmont hospital, and realized that I was not the easy victim he thought, so he tried to cover his behind by doing all that libelous charting as he exited.

 I have filed the various complaints that I’ve been advised to file given the types of improprieties that happened, one of them a police report with Dekalb County, GA.

 As long as he has full privileges at Emory he can tamper with my treatment, he knows where I live, and could possibly also endanger my son and his treatment whom is waiting for surgery for a D-Net tumor. That electronic records system states every appointment within the system I have scheduled, its time, and location, so I am in danger of further harassment and tampering with my treatment by him. He has shown his intentions to try to do that in that ER report.

 This rogue neurologist should have his license permanently revoked as he has clearly shown malicious intent toward a patient, (at least towards me, and maybe others), he abused his position and power differential in order to physically assault me in the process of his “work”, and followed that up by essentially attempting to blacklist me with other doctors now and in the future, something that may have life-long ramifications and fundamentally hurt or destroy healthy and beneficial doctor/patient relationships. If he would do this to me then it is reasonable to suspect he would place other patients at great risk in this way.

Who exactly is this dark man, and who sent him?

To what extent did he influence (and possibly orchestrate) the way I was treated in the ER earlier in the day?

As of yet these questions remain unanswered.