Unfair Ultimatums; Which Would You Like To Keep? Your Arm or Your Leg?

Treatment or Healing

If a doctor forced you to decide whether to keep your arm or your leg which would you choose? This is a ridiculous scenario, but figuritively speaking, chronically ill patients are expected to do that on a regular basis, sacrificing one thing they need in order to have another they need just as much.

I found this out first-hand when I began receiving services through SOURCE, a Medicaid waiver program that provides personal assistant services to people with disabilities who need help at home. When I first began with them I was told that I had to utilize a primary care doctor off a list they provided but that I could also keep any other doctors I wanted to keep.

The primary care doctor I had chosen when Emory sent me the certified letter kicking me out was somebody affiliated with Piedmont Hospital and although I wasn’t sure whether she was going to be able to help me get the necessary referrals to out of town specialists a staff person from her office called last week to say that she was in fact working on a referral to Vanderbilt and just to give her some time to get it facilitated.

Good idea

She was unable (because Piedmont doesn’t accept direct Medicaid payment) and unwilling (because she didn’t want to be inundated with Medicaid Patient referrals) to sign up to get on the SOURCE list but I had been told by the SOURCE caseworker that I could have one doctor through their list and also keep her if I chose.

Today I went to the appointment with the SOURCE doctor I’d picked out (whom I will call Dr. HA). Dr. HA had wavy brown shoulder-length hair and was a little taller than I was; maybe about 5 ft 4 or 5.5 and of medium build.  

She seemed nice but I could see fairly quickly that there were going to be numerous problems. 

Untrusting Woman

First, she wanted the records from Emory. This was a non-starter right off the bat and it seemed there was no way to make it out of this minefield unscathed. She told me that she had privileges at Emory Midtown (where Dr. H, my Pulmonologist works) as well as at Piedmont, and (strike 2) that “Emory’s good.” Uhhhh…Not so  much, I thought.

I told her I’d been going there for 13 years and that it used to be but this past year something has changed, but she wouldn’t leave it at that. This turned into a game of 20 questions. She wanted to know what the political stuff was and on, and on. I reluctantly told her that there are numerous inaccuracies in my medical record and that two very important consults out of town had been sabotaged at the last minute, so I was not comfortable signing a blanket release for that medical record to any doctor, but that I would give her the objective information from test results, vital signs, etc.

“I won’t judge” she said Dr. HA in her thick Russian accent. “I can just go in and pull it since I am affilliated with them.” She then said she would also like the information on my chronically elevated liver enzymes.

On Disc

“No, the clinical notes are awful. I’d rather you not. I would rather just close the book on it and not re-open any of that. I don’t want this stuff passed on from doctor to doctor.”

“If you don’t want me to look I won’t look” continued Dr. HA.

I’d heard this song and dance before and no longer trusted it. Signing such a release would have given her the legal right to access the electronic record as a whole and it was too big a risk. “I can give you the objective stuff. I have some of it with me and the data on my liver enzymes I can get for you if you need those”, I responded.

This doctor utilizes students from the Carribean and often 3 or 4 heads are better than one, and could ultimately be helpful but these were not residents but medical students so they were not as far along in their training as I’d originally thought. They all looked of West Indian descent with dark straight hair and dark skin.

One woman typed my medical history while another checked my vital signs and… checked my reflexes (ick). This more irritated me than scared me this time. I resisted the urge to throw that hammer across the room, LOL. As usual I had spasticity/hyperreflexia in my legs. She did not check the reflexes in my arms; just strength.

When it came up as to whether I wanted her to be my primary care doctor I explained that yes, for Source, and that Dr. P was already working on referring me to Vanderbilt and that I didn’t want to further delay that. This was a sticking point with her and she also seemed overwhelmed with the referrals I needed. She asked why Emory couldn’t just have me seen in their Movement Disorder clinic at which point I had to further explain that the Chief Medical Officer had kicked me out and then she wanted to know why, yada, yada…and I said that besides, I had never been referred there even before all that happened and that that was a big part of my problem; that the proper referrals to specialty clinics had not been acted upon when they should have been and with all the politicization of my case it would not really be in my best interest to go to their Movement Disorder clinic now even if I had not been barred from going as it is doubtful that I would get a fair and unbiased evaluation.

Doctor in the office

I went on to explain that I have rescheduled the one at UF Movement Disorder Clinic for January but that I need a doctor to sign off on the necessary forms for my oxygen concentrator to be carried on the plane and the one for the non-profit to cover my travel expenses.

“Really you need to have a neurologist to do all those things” said Dr. HA. “I feel it would be better for me to have back-up in case there ever was a neurological problem I don’t know how to handle.”

“I had two; one in Sleep Medicine who treated my Myoclonus and one in General Neurology” (giving her their names), “but Administration came in and forbid them to keep seeing me. I trusted them because they were going to support me through this process, but I had a really bad experience with a male neurologist and after that I don’t know if I can go to another one here in Atlanta. I looked and there was nobody of the ones available that I was that impressed with, besides, that male neurologist in the Emergency room was out-and-out abusive. I just really am hesitant after that.”

“Did you report it?” she asked?

“Yes.”

Well I know one at Piedmont who’s good…Dr. _____” (I will call this one Dr. HAA to avoid a mix-up as there are lots of these doctors who’s names start with H), I’d heard of him and can’t remember what his reviews said, but still…he’s a male neurologist. The thought of going through this embarrassing explanation as to what happened at Emory with yet one more Atlanta doctor, much less a male neurologist, was more than I could stand.

The primary care doctor, Dr. HA had me describe my Myoclonus, then looked up something on her phone. “Tramadol could lower your seizure threshold”, she said glancing over at me.

“I know, but the neurologists I was seeing didn’t think my Myoclonus was seizure-related, they thought it was due to the underlying disease-process, so I don’t think that is an issue. Besides, I’d already tested going off it for a few weeks and it made no difference in my Myoclonus at all. It’s much better on the 1000 Mgs of Keppra than it used to be before I was on it. I used to be up all night with it until 7 AM.”

Time

The two students stared ahead making slightly uncomfortable faces at her apparent lack of clinical knowledge regarding the several different etiologies of Myoclonus. I noted it as well.

“Dr. P is in the process of setting up the referral to Vanderbilt. I’ve waited 7 months for treatment already and I really don’t want to delay it any longer. The neurologist may or may not even do that.”

“Let me speak with your caseworker” replied Dr. HA. “I don’t know why she told you to keep both of us. That doesn’t sound quite right for me to be for Source and she wouldn’t sign up but she will get paid to see you too when I went through the paperwork to get on their list.”

I handed her the caseworker’s business card and she dialed the number. “Ms. N? This is Dr. HA”, she introduced herself. “Yes, I’m here with Ms. Carlington in the office. She has told me that she was told she could see a doctor through SOURCE and also this one that she’s already established with who is not with SOURCE. I don’t think that’s right that she sees her and also me. Why did you tell her that? I don’t really appreciate it.”

Both me and the two female students in the room looked at one another awkwardly.

Rolling the dice

She put the caseworker on speaker. “I just figured she could do everything dealing with the neurological referrals” said the caseworker, “since she was already working on the referral. We really just need a doctor on record and since she was unable to get on the list I told the client to just pick one on the list for our purposes in addition.” And then speaking to me “Ms. Carlington, I guess you’ll just have to take this one on faith so that you don’t lose the home help. I don’t know what else to tell you if she won’t do it along with Dr. P.”

My heart sank “I’m beginning to think this is becoming more trouble than it’s worth. She wants me to see a new neurologist for the referral rather than her to do it if I switch to her. I don’t know any neurologist I trust and who knows if the new one would even give the referral. This could go on forever and I might never get to Vanderbilt at this rate.”I told her I just didn’t know what to do at this point, as I have had to change way too many doctors in a short period of time.

Dr. HA thanked her for speaking with her. I started to ask the caseworker if she’d be in the office when I got home so I could call her later, but she’d already gotten off the phone.

Dr. HA wrote me a refill of my Tradadol (but just 1 month’s worth) and told me that she’d give me a month to decide what I wanted to do, that she wouldn’t bother making copies of my records I’d brought with me until she knew I was coming back, then I followed her and the students back out into the hallway.

I need the referral to Vanderbilt but I also need the personal assistant. It’s not an either or situation. I need both equally. This is a real double-bind, but it seems if I get rid of Dr. P she won’t be too thrilled after she’s gone to the trouble of working on the referral to Vanderbilt, and she’s a sure thing and will save me time if she does it. 

Dismembered Body

This newer primary care doctor is a question mark at best, and whether a new neurologist she recommends will follow through with the referral (if I can even get up the guts to see a local neurologist) is a total crapshoot since she doesn’t want to do it herself. It also makes me uneasy that she’s invloved with Emory on any level. Somehow in all these people’s self-interest I, the patient got left behind.

So many don’t understand the magnitude of my loss. I had two good female neurologists and they were ripped away from me when I needed them most. This is killing me. I need time to grieve. All this not being seen or heard and being required to fit into other people’s boxes I don’t fit just makes my heart ache and all I want to do is withdraw from everyone. Step out on faith? I can’t; not again for the umpteenth time. I need to eat what I like, keep to my routines, pace myself and not make too many changes too quickly. For me that’s a necessity; not a luxury.

 

 

Advertisements

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!

 

Lower GI Spasticity Wreak’s Havok – Dysautonomia Untreated

Lower GI Spasticity DSC_0008

Friday came and went without an order written. Dr. V. was “with child” as she so aptly put it at my appointment with her two weeks ago, and wasn’t much help, and so my Dysautonomia rages on. Even with her baby’s untimely birth she was able to tell the nurse to have me “follow up” with the nurse practitioner when she could just as easily just given them permission to write the order for the saline and maybe I’d be starting to feel better right about now, but that would have been too simple. It seems that every time I start to “think positive” I am let down and I find out things aren’t looking up afterall.

I told the nurse who had delivered the message that the nurse practitioner was welcome to call me and write the order but there was no need for me to waste a trip to go out there just so that I could tell her what Dr. V. already knew herself. I reiterated that this has gone untreated for 3 months and my patience is reaching my limit. If Dr. V. was so concerned about my “stress” level then why stress me out further by making things unnecessarily hard for me. This runaround I was getting was BS and everyone, especially Dr. V. herself knew it. It was high time they put this condition down in my chart officially, quit monkeying around, and get down to business. 

“Look” I told the nurse, trying my best not to hit the roof, my irritation level already approaching 10, “I’m chronically ill. I have 3 appointments next week and I can hardly withstand being out of bed in an upright position for 15  minutes. I’ll be lucky if I can even tolerate the appointments I’ve got, so I sure can’t afford to make more trips out that aren’t absolutely necessary. That’s the whole point! I need this treated at home. All she has to do is authorize the order written by the nurse practitioner or whichever doctor is covering for her. It’s not that difficult. My GP was going to treat it until Dr. V. dragged extraneous stuff into the equation and he backed out, so in all fairness, she is responsible now. Number one; this should have been entered officially in my chart among my diagnoses. Dr. V. acknowledged that she was aware of it when I saw her. All the data and pictures of my purple feet are there for any doctor to see anytime they want, and number two; we already know that saline works for me, so why go back to square one and reinvent the wheel?”

“Yes, Ma’am” the nurse replied sheepishly. “I understand. I’m just passing on the message. There’s nothing I can do.”

Then an ugly truth occurred to me. The reason they wanted me to waste an appointment was so they had another reason to bill my insurance (which I’m sure doesn’t pay much), but that’s not supposed to make a difference in the level of care I get. Right???…Right???

“Let me speak with Dr. L. Isn’t he the head of the department?”

“No That’s Dr. E.”

“OK, then could you please let me speak to him? This is becoming too much to take. It’s time they did something about it.”

“No I can’t let you talk with him or any of the doctors. I have to have you go through the Nursing Supervisor.”

“What? I can’t speak to any of the doctors? That’s ridiculous! Look, it’s fine with me that Dr. V. is on maternity leave but if nobody on the team can call me to do anything about this then what good is this clinic? She assured me that I would not be left uncovered in her absence, but that’s what’s happening. One would think they’d prefer treating this earlier than later so it doesn’t become another emergency. I’ve already been hospitalized and in the ER in just the past few months. I can’t let that happen again. Things are already getting worse again.”

“That’s not how this clinic works. I have to have the Nursing Supervisor call you.”

“OK, if you absolutely must then please ask her to call me today so we can get this resolved. The weekend is coming up and I’m really not feeling well. I don’t want to waste anymore time.”

The nurse took my name and number and told me she marked the message high priority, but by the end of the day no call had come in.

Saturday I awoke from a sound sleep with a weak, irregular heartbeat and feeling woozy. There was an adrenergic feeling in my chest and in my muscles as though lactic acid had built up and I’d overdosed on it; a horrible feeling I know all too well (and there was nothing I could do to make it go away and nobody to call). All I could do was wait it out until Monday when doctors were back in the office.

At times like these it’s easy to start wondering why you’re being allowed to suffer. Do they dislike you? Are they that clueless about this condition as to think it’s minor and doesn’t need treatment, or do they just think your insurance pays so little you’re not worth it. None of these rationales is good because the long and the short of it is that you’re being neglected no matter how you look at it. That fact cannot be denied. Seriously, my dog gets more compassion at the vet’s office!

Sunday rolled around and I awoke early, several different times; first with fasciculations in the toes of my right foot, and then followed by a horrible rumbling in my stomach and the realization that the acute flare had hit once again with a vengeance. It felt as though someone was literally twisting my intestines from the inside. I gripped my lower abdomen in agony and the pain was so piercing I could hardly catch my breath, burping, lightheaded, and feeling slightly to moderately faint, with hissing in my ears. I then started getting nauseated. It literally felt as though my guts were going to explode! Then I began overheating. Every minute felt like an hour as I lay there waiting for the pain and gastric upset to subside.

Tonight I’m still not feeling well. I’m a little concerned about the appointments that got jammed up this week after the care slowdown because I feel like I really don’t need to be up out of bed. My stomach is rumbling, and I’m overheated but sort of feel like I’m having a cold sweat at the same time.

Yet another weekday has gone by and after a few more  calls to follow up still no help from General Neurology, Nursing Supervisor or otherwise. Message is still pending according to the switchboard operator as of late this afternoon.

Not Being Believed

Baby Duckling Quacking

I had what may be just the first uncomfortable conversation with my GP yesterday, and it kind of went like this;

Patient: I brought you a whole folder with bullet points and everything.

Doctor: Oh Great! (looks through the list of requests) Can do this one – send doctors notes to Shepherd Center. Now what exactly do you need in the way of accommodations; just so I can document (I’d told him in great detail already via the patient portal. Clearly he missed the part where I said it took too much energy to remind him over and over again because I’M ILL, OK????).

Patient: You can see here that I have to prop a pillow in my wheelchair and there’s really no neck support and that doesn’t really work so well, the center of gravity in this chair is very small focused all on my butt and my weight needs to be evenly distributed because sitting in this thing aggravates the spasticity and my gluteus muscles and trapezeus muscles, the muscles in my legs, and neck and back get really stiff and I really need to be able to be in a reclining position because gravity just kills my muscles and it’s agonizing.

Doctor: OK. Well here’s the thing. There’s the objective and the subjective (this is when he pulls out a piece of paper and starts drawing a circle and then another circle around that one with a bunch of s shapes floating in the larger one). Dr. V. did feel you have something wrong neurologically (motioning to the inner circle).

Patient: Finally.

Doctor: But…(as he starts to motion towards the outer circle), she feels that you have emotional stuff too going on out here. So since several neurologists have said things about emotional stuff I really have to only look at objective data like tests and that kind of thing. With these neurologists feeling there’s emotional stuff going on your patient reports of symptoms; things such as nausea, spasticity, pain etc. can’t be taken as a given now. The fact that Dr. V. says that you do have something neurological going on isn’t enough. Until you have a neurologist that says there’s nothing emotional going on I can’t accept your word about these things. That is the challenge (he interrupted himself) No I really don’t know if that’s possible (implication being he would never believe me no matter what). She doesn’t know how much of it is one and how much is the other to be able to tease that out.

Patient: Aren’t you setting up an impossible standard here? My Piedmont vitals record clearly had objective data showing the Dysautinomia. What’s wrong with that?

Doctor: Well that’s subjective. I have 40 pages of blood pressures from home health here that have normal ones (which I kind of doubt since the nurse was taking it just once or twice a week and the period was about 6-8 weeks I think). The only test I know of is a tilt table test (he wrote down “will consider tilt table test”).

Patient: How is that subjective? It’s raw data! That’s ample proof! I gave you another copy with asterisks to the left of everything flagged! (It became crystal clear at that point that what he really meant is because it was mailed to me and provided by me it must not be legit. Well he can order his own copy sent directly to him if that’s what he was implying. Things were becoming insulting at that point in the conversation). Taking blood pressure one time once a week isn’t going to pick it up!

Doctor: I know. Modified Barium swallow; I can do that. TMJ MRI; can do that. What kinds of problems are you having that you need the MRI for? (also a repeat of what I put in writing on the patient portal).

Patient: It’s dislocating to one side or the other and sometimes cracking when I open my jaws.

Doctor: OK. IV Saline; No can’t do that since there again the other symptoms besides blood pressure you’re reporting are subjective. I’ll contact Daria myself to see what home healthcare can provide. Vascular testing and testing for Mast Cell Activation is pretty much bogus; No. IVIG; your IGG level was OK so insurance probably wouldn’t pay for that.

It went on like that for awhile; the upshot being that he was nitpicking on every single thing and as far as treatment absolutely nothing new came out of it.

I still can’t get over the fact that he made that statement saying he couldn’t take my word for any of my subjective symptoms now that he thinks I have some emotional thing on top of the neurological thing.

So in other words I’m being considered mentally incompetent? Last time I checked that was considered stigma and discrimination and that’s a human rights issue!

I had told him that yes I may have secondary trauma due to being abused throughout this process, but it’s nothing that necessitates this sort of gate-keeping and not a reason for him to not take me at my word.

In that case I guess I can skip all the paperwork I’m supposed to fill out periodically asking about my symptoms since he doesn’t believe me now. Apparently it’s not valid because it comes from me.

I came home and have been really crushed by this whole thing and I don’t know how much longer I can tolerate this. He is going to give me a mental illness pretty soon at this rate. I’m through proving myself. If he wants any more proof he can order more tests. Otherwise I expect these things done.

This is totally humiliating and I have done nothing to deserve this level of cynicism.

 

Bull In A China Shop General Neurologist

Girl Stop! Oh No You Didn't! DSC_0001

Friday morning filled me with a sense of foreboding. I showered, dressed, and prepared some coffee, trying my best to distract myself and do comforting things so as not to be too terrified of the early afternoon appointment with the neurologist at Emory’s General Neurology Clinic.

As much as I’d gone over it in my mind what I was going to say, and telling myself I could always say no to things I couldn’t help but shed some tears as I waited in the kitchen with my dog, Carmella for the transportation van to pick me up and deliver me to some unknown fate; good or bad, I didn’t know. Despite my best attempts to stay calm I felt like poultry aware of its impending slaughter with every passing minute.

I told myself that at least by going in there even if just to talk to her I’d be established in case I needed one of the specialty clinics later on once the independent evaluations were completed over the next few months, and maybe I wouldn’t be as frightened when the time came to see the out of town Movement Disorder specialist.

It wasn’t long before the driver was knocking on my door, a heavy-set black guy who looked to be somewhere in his 30s. I rushed out in my power wheelchair dressed in black and white long-sleeve print shirt, bright red cotton pants, and a camel brown coat which had soft faux fur on the inside. In my hurry halfway down the ramp to the driveway I realized I’d forgotten my pillow and thought “Oh damn, now my neck is going to kill me by the time this is over” as my wheelchair doesn’t have a proper headrest or any neck support, but it was too late to go back and get it.  I had my usual Styrofoam cup of ice water with me and everything else I needed, so I ventured out hoping for the best.

When I reached the waiting van another guy got out and let down the left and I loaded up, then positioned my chair so that they could secure it to the fixtures in the floor. Being that I have a Hoveround, these guys never know how to attach it, so I had to show them where the hooks could be connected so that the ride would be safe. With a little tinkering they got it hooked up and the second man who was chubbier than the first sat down on a bench behind and to the right of me. Halfway down my street as we pulled away I heard loud snores coming from the man behind me. I glanced over and he had dropped his cellphone, slumped over in a half-sitting-half reclining position. I motioned to the driver who seemed unphased  though slightly amused and he remarked “Oh yes, he does this all day. All day. It’s just part of the package.”

As we neared our destination the man in the seat behind me was snoring so loud I thought he might have a stroke. I mentioned to the driver that he might want to look into having a sleep study done and said that if the company provided health insurance he could have it done in this same building, that for someone to be sleeping that much on the job wasn’t normal and there had to be something medically wrong. The driver said he was glad someone else noticed and that they’d have to look into that as it would be a good investment, given that he didn’t know whether this guy would keep his job if this continued.

I entered the building, then went to the 5th floor. The waitingroom was modern with a curved wooden front desk and a young woman with black-rimmed glasses and long black hair who appeared to be Indian or Pakistani descent sat behind it on the left, and a young man sat at another computer terminal on the right. A flat screen TV was on mounted on the wall on the left side of the room. There were only a few other patients there sitting in danish-style wooden chairs that were positioned in two rectangular formations on each side with a space for people to walk through in the center.

I went over to the woman behind the reception desk and checked in, and was told that the doctor was running a little late because of a meeting but would be out shortly.

It looked like a group of about 10 men and women filed in and down the hall to the rooms to the back just as I positioned myself near a small end table. I fidgeted a little, rubbed the inside of my furry coat, then decided to get out some pieces of ice to suck on. An elderly man and his wife sat down just to the right of me, and it never fails, when I want to be discreet something like this always happens. The ice had melted slightly and stuck together so a piece I was trying to break off flew across and landed on the carpet in front of me out of reach. Thee wasn’t much room to maneuver my wheelchair and I was afraid I might run over the wife’s foot if I went to pick it up, so I wasn’t sure what exactly to do. Luckily the woman asked if she could help me and got up and deposited it in the sink on the other side near the TV. I thanked her and then got a few pieces of ice, reached over to pick up a National Geographic magazine and began flipping through it to find an article that interested me. Finding one about wolves in Canada I began reading, anything to distract myself. 15 or 20 minutes later a young black woman with thing braided hair extensions called me back to one of the exam rooms. I followed her to one of the ones on the left off the main hall and she took my vital signs.

I asked her to take the BP in my left arm because my right was in quite a bit of pain. It was the muscle that runs near the inside of my elbow to forearm that I’d injured brushing my hair in October the morning before seeing Dr. Trotti, the temporary neurologist connected with the sleep center.

As is often the case my diastolic blood pressure was high. My new patient forms and medication sheet sat on the small nook-like desk by a computer screen. The room was small and minimally decorated with a flat table to the right of where I was sitting and cabinets and a small counter on the left near the door. There was a rolling chair by the computer.

The nurse asked me a few questions, two which I choked out a rather weak and breathy response, told me she hoped I’d feel better, and said the doctor would be in shortly. My arm ached, my neck and back ached, even the muscles in my legs ached and I wished I were home, safe in my bed. I realized my watch had stopped but there was no clock on the wall anywhere. I read some more of the magazine and fiddled with the fur on my coat some more trying to quell the panic rising in my throat. Each minute that passed seemed like an hour.

Then finally there was a knock at the door. It opened and in walked a rather plump woman with a round face who looked almost nothing like the profile picture on Emory’s website. In the picture she was slim and looked no more than 17, but here in person she appeared to be somwhere in her mid to late 30s, rotund, her hair, a streaked blond like in the picture but with more body and cut slightly shorter, a few inches longer than shoulder-length.

She extended her hand. “Hi, I’m D.V.” (gentle hand-shake); so far so good. Although the information on the website said shed been trained in Bogata, Colombia she had almost no accent. Taking a seat in the chair across from me a few feet away she proceeded to tell me she’d read my record. (“Oh shit!”) I thought, and wondered which ones she’d read. I dared not ask, not wanting to open a can of worms. She asked me what brought me in and I recapped my symptoms and referenced what I’d written in the new patient paperwork. I gave her a brief rundown of the history and progression over the past 6 months and after just a few sentences she moved towards where I was sitting in my wheelchair and asked me if I could take a few steps, which I did, then sat back down.

I had already decided all I wanted to do was talk that day, but apparently she had other plans. I watched her carefully to see what she was going to do.

Taking out a penlight she shined it in my eyes. After looking at my eyes she asked me to look at her finger from side to side, up and down.

I tolerated that but in my own mind told myself that was going to be as much as I was going to take of anything of a physical nature. I didn’t know her and didn’t know her agenda just yet and the man who had hurt me with such exam had left a nasty imprint on my limbic system that I couldn’t shake no matter how I tried. I knew only too well that women were capable of great treachery as well even if they seemed kind on the surface. Gone forever were the days when I took people at face value. I tried that and saw where it got me. I wouldn’t be so trusting this time.

She took out her tools in a small towel and laid them on the bench and that’s when I freaked!

“Could we not do that right now?” I said, trying to sound pragmatic, not wanting to show just how panic-stricken I actually was inside. My relative composure completely went out the window when she pulled out the hammer. It was a smaller one than the one Dr. M. had used, and more of a rounded type, but nevertheless it was still a hammer. I was having a bad pain day and was in no mood for this. Every fiber of my being, every strand of my muscle was screaming (“No absolutely not!”). If I could have jumped over the back of my chair and run I would have at that moment. I backed away as far as my chair would let me, but she made no move to put it down. “I had a bad experience with a neurologist!” I blurted out in a last ditch effort to get her to back off.

“I’m going to do it on me; not directly on you” she said placing her thumb between me and the hammer. I was shaking my head no knowing that still didn’t change anything. Then seeing there was no escape I braced myself. Her thumb was little buffer for the impact and although it wasn’t near as hard as what I’d had in December it didn’t exactly tickle.

The primal self came back and took over. I felt like a trapped animal, drawing up and cringing at each blow as though I was going to come out of my skin. It seemed as though she was trying to hurry it up but it was as though I left my body for fragments of seconds throughout although on one level I was aware of my body struggling. I’m not exactly sure where my consciousness was but it seemed as though it was receded tucked as far away inside as possible.

It seemed as though every nerve and neuron was on overload.

Once she finished with the hammer she went about putting her hand under at the back of each knee and jerking up sharply and something similar with my arms. This elicited  severe spasticity in all 4 of my limbs, and eventually the back-bend arching movements I sometimes have.

After that and pushing and pulling on various muscles she commented after she went back to her seat across the room that she thought it wasn’t so much weakness but spasticity that is the problem. She recommended physical therapy “to relax the muscles” and said she wasn’t suggesting regular types of exercises, but stretching. When I said that massage also helps she said that’s because it relaxes the muscles “and the mind”. I made a mental note that she put that in and hoped that she wasn’t using that as a sneaky way to make it all in my head as Dr.M. (AKA The Dark Man) had said.

Then she told me it’s possible that my Sarcoidosis could be causing this and the Dysautonomia if it has reached certain parts of the brain or nerves. She also said that it can affect nerves in the hip. I have been having pain in that area, especially the left hip and gluteus muscle. She seemed to be leaning strongly on the hypothesis that it’s my Sarcoidosis in brain and/or hip nerves and didn’t think the spinal findings and TMJ would be interfering with nerve impulses.

Then her demeanor turned kind of intense. “What are you taking for your Sarcoidosis now?”

“Benicar, off-label every 4 hours; the Marshall Protocol” I replied.

“You realize the medication is not working” she said rhetorically. “Have you been on Prednisone?”

“Briefly”

“And what was the result?’ she asked.

“It wasn’t good. Extreme rage. I can’t risk that” I replied.

“If we do find that your Sarcoidosis is active and affecting the brain you really need to think about going on immunosuppressants”.

By immunosuppressants the dreaded heavy-duty disease-modifying agents like Enbrel and Remicaid were what she was referring to. Her eyes seemed to drill into mine. Time slowed to a standstill. I fought back tears and told her how I’d outlived many people I’d come to know in the Sarcoidosis patient community because I’d not taken that route. I saw too many people end up with complications that were as bad or worse than the disease, some ending up requiring transplants and pacemakers because of the damage done to their organs, only to die a horrible death. These people died way too young.

I told her I was afraid that after the 10 years I had to go off the Marshall Protocol it might have been too late for it to be effective when I went back on it and maybe that’s why it isn’t working anymore.

“If it’s affected the brain on this level then probably so. We need to do a gallium scan to find out, and I want to look at your MRI film from Piedmont.”

“OK, but they didn’t see anything. I’ve heard it doesn’t always show up in imaging anyway.”

“Yes, but it doesn’t always just show up and say “See, here I am.” It occurred to me that this was the first time I detected her accent.”If it turns out” she continued, “that it is your Sarcoidosis, if the gallium scan lights up anything we won’t need to do more tests, but if not we will need to. If it is your Sarcoidosis then you really really need to go on immunosuppressants.”

I could no longer keep eye contact. This was becoming too much and I fell silent, just waiting for it to be over. She was still looking at me when I glanced back. “Okaaaaaay???”

The words wouldn’t come out. I was in total lockdown for what seemed like an eternity but was probably not more than about a minute in actual time. It was not OK at all.

I think she repeated it about 3 or 4 times. The pressure was like a thousand pound weight. It was the same feeling I had when the nurse practitioner in Gastroenterology kept pushing me to have a colonoscopy when I can’t withstand the stuff you drink and its effects because of my Dysautonomia. You just know you can’t do something and you find yourself unable to speak.

I knew then that beyond these tests it was not going to work.

This was further confirmed by the fact that she is 9 months pregnant and going on maternity leave until May starting next week, that she is somewhat lackadaisical about responding to her patients on the patient portal, and that sometimes a nurse practitioner or another doctor sees her patients.

She didn’t seem like she was exactly going out of her way to win me over, and damn it, after what I’ve been through any neurologist worth their salt better be!

I’m all for accommodation in the workplace for women who want to have children, but quite honestly I don’t need someone who is distracted and divided right now, whose head is not in the game. I need someone who has the time to devote because what I’m dealing with medically requires it in order to do the job right. I also need a neurologist who truly gives a damn and respects my boundaries. I wish I could see Dr. W. She did, but it seems like I’m caught in a terrible catch 22; those doctors I feel comfortable with for one reason or another can’t or won’t do it, and I’m left with the ones who don’t get it and don’t care to.

When I got back up to the front desk the man who was dealing with release forms and orders handed me the physical therapy order. It wasn’t until I got home and looked at it more closely that I realized it didn’t reflect the mere stretching she’d told me verbally she was recommending. The interventions said “Gait training, Functional movement”, and “Exercise” (not specifying stretching). I’m tired, and I don’t just mean this week, this month, or this year, but existentially tired, and I need rest. Rest and true, genuine kindness.

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

DSC_0001

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.

Face off kilter DSC_0011

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.

another headshot but eyes drifting DSC_0012

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.

Close up of purplish right foot and ankle DSC_0008

Color Zoning on Feet and Right Ankle DSC_0014

DSC_0006

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.