If a doctor forced you to decide whether to keep your arm or your leg which would you choose? This is a ridiculous scenario, but figuritively speaking, chronically ill patients are expected to do that on a regular basis, sacrificing one thing they need in order to have another they need just as much.
I found this out first-hand when I began receiving services through SOURCE, a Medicaid waiver program that provides personal assistant services to people with disabilities who need help at home. When I first began with them I was told that I had to utilize a primary care doctor off a list they provided but that I could also keep any other doctors I wanted to keep.
The primary care doctor I had chosen when Emory sent me the certified letter kicking me out was somebody affiliated with Piedmont Hospital and although I wasn’t sure whether she was going to be able to help me get the necessary referrals to out of town specialists a staff person from her office called last week to say that she was in fact working on a referral to Vanderbilt and just to give her some time to get it facilitated.
She was unable (because Piedmont doesn’t accept direct Medicaid payment) and unwilling (because she didn’t want to be inundated with Medicaid Patient referrals) to sign up to get on the SOURCE list but I had been told by the SOURCE caseworker that I could have one doctor through their list and also keep her if I chose.
Today I went to the appointment with the SOURCE doctor I’d picked out (whom I will call Dr. HA). Dr. HA had wavy brown shoulder-length hair and was a little taller than I was; maybe about 5 ft 4 or 5.5 and of medium build.
She seemed nice but I could see fairly quickly that there were going to be numerous problems.
First, she wanted the records from Emory. This was a non-starter right off the bat and it seemed there was no way to make it out of this minefield unscathed. She told me that she had privileges at Emory Midtown (where Dr. H, my Pulmonologist works) as well as at Piedmont, and (strike 2) that “Emory’s good.” Uhhhh…Not so much, I thought.
I told her I’d been going there for 13 years and that it used to be but this past year something has changed, but she wouldn’t leave it at that. This turned into a game of 20 questions. She wanted to know what the political stuff was and on, and on. I reluctantly told her that there are numerous inaccuracies in my medical record and that two very important consults out of town had been sabotaged at the last minute, so I was not comfortable signing a blanket release for that medical record to any doctor, but that I would give her the objective information from test results, vital signs, etc.
“I won’t judge” she said Dr. HA in her thick Russian accent. “I can just go in and pull it since I am affilliated with them.” She then said she would also like the information on my chronically elevated liver enzymes.
“No, the clinical notes are awful. I’d rather you not. I would rather just close the book on it and not re-open any of that. I don’t want this stuff passed on from doctor to doctor.”
“If you don’t want me to look I won’t look” continued Dr. HA.
I’d heard this song and dance before and no longer trusted it. Signing such a release would have given her the legal right to access the electronic record as a whole and it was too big a risk. “I can give you the objective stuff. I have some of it with me and the data on my liver enzymes I can get for you if you need those”, I responded.
This doctor utilizes students from the Carribean and often 3 or 4 heads are better than one, and could ultimately be helpful but these were not residents but medical students so they were not as far along in their training as I’d originally thought. They all looked of West Indian descent with dark straight hair and dark skin.
One woman typed my medical history while another checked my vital signs and… checked my reflexes (ick). This more irritated me than scared me this time. I resisted the urge to throw that hammer across the room, LOL. As usual I had spasticity/hyperreflexia in my legs. She did not check the reflexes in my arms; just strength.
When it came up as to whether I wanted her to be my primary care doctor I explained that yes, for Source, and that Dr. P was already working on referring me to Vanderbilt and that I didn’t want to further delay that. This was a sticking point with her and she also seemed overwhelmed with the referrals I needed. She asked why Emory couldn’t just have me seen in their Movement Disorder clinic at which point I had to further explain that the Chief Medical Officer had kicked me out and then she wanted to know why, yada, yada…and I said that besides, I had never been referred there even before all that happened and that that was a big part of my problem; that the proper referrals to specialty clinics had not been acted upon when they should have been and with all the politicization of my case it would not really be in my best interest to go to their Movement Disorder clinic now even if I had not been barred from going as it is doubtful that I would get a fair and unbiased evaluation.
I went on to explain that I have rescheduled the one at UF Movement Disorder Clinic for January but that I need a doctor to sign off on the necessary forms for my oxygen concentrator to be carried on the plane and the one for the non-profit to cover my travel expenses.
“Really you need to have a neurologist to do all those things” said Dr. HA. “I feel it would be better for me to have back-up in case there ever was a neurological problem I don’t know how to handle.”
“I had two; one in Sleep Medicine who treated my Myoclonus and one in General Neurology” (giving her their names), “but Administration came in and forbid them to keep seeing me. I trusted them because they were going to support me through this process, but I had a really bad experience with a male neurologist and after that I don’t know if I can go to another one here in Atlanta. I looked and there was nobody of the ones available that I was that impressed with, besides, that male neurologist in the Emergency room was out-and-out abusive. I just really am hesitant after that.”
“Did you report it?” she asked?
“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.”
The two students stared ahead making slightly uncomfortable faces at her apparent lack of clinical knowledge regarding the several different etiologies of Myoclonus. I noted it as well.
“Dr. P is in the process of setting up the referral to Vanderbilt. I’ve waited 7 months for treatment already and I really don’t want to delay it any longer. The neurologist may or may not even do that.”
“Let me speak with your caseworker” replied Dr. HA. “I don’t know why she told you to keep both of us. That doesn’t sound quite right for me to be for Source and she wouldn’t sign up but she will get paid to see you too when I went through the paperwork to get on their list.”
I handed her the caseworker’s business card and she dialed the number. “Ms. N? This is Dr. HA”, she introduced herself. “Yes, I’m here with Ms. Carlington in the office. She has told me that she was told she could see a doctor through SOURCE and also this one that she’s already established with who is not with SOURCE. I don’t think that’s right that she sees her and also me. Why did you tell her that? I don’t really appreciate it.”
Both me and the two female students in the room looked at one another awkwardly.
She put the caseworker on speaker. “I just figured she could do everything dealing with the neurological referrals” said the caseworker, “since she was already working on the referral. We really just need a doctor on record and since she was unable to get on the list I told the client to just pick one on the list for our purposes in addition.” And then speaking to me “Ms. Carlington, I guess you’ll just have to take this one on faith so that you don’t lose the home help. I don’t know what else to tell you if she won’t do it along with Dr. P.”
My heart sank “I’m beginning to think this is becoming more trouble than it’s worth. She wants me to see a new neurologist for the referral rather than her to do it if I switch to her. I don’t know any neurologist I trust and who knows if the new one would even give the referral. This could go on forever and I might never get to Vanderbilt at this rate.”I told her I just didn’t know what to do at this point, as I have had to change way too many doctors in a short period of time.
Dr. HA thanked her for speaking with her. I started to ask the caseworker if she’d be in the office when I got home so I could call her later, but she’d already gotten off the phone.
Dr. HA wrote me a refill of my Tradadol (but just 1 month’s worth) and told me that she’d give me a month to decide what I wanted to do, that she wouldn’t bother making copies of my records I’d brought with me until she knew I was coming back, then I followed her and the students back out into the hallway.
I need the referral to Vanderbilt but I also need the personal assistant. It’s not an either or situation. I need both equally. This is a real double-bind, but it seems if I get rid of Dr. P she won’t be too thrilled after she’s gone to the trouble of working on the referral to Vanderbilt, and she’s a sure thing and will save me time if she does it.
This newer primary care doctor is a question mark at best, and whether a new neurologist she recommends will follow through with the referral (if I can even get up the guts to see a local neurologist) is a total crapshoot since she doesn’t want to do it herself. It also makes me uneasy that she’s invloved with Emory on any level. Somehow in all these people’s self-interest I, the patient got left behind.
So many don’t understand the magnitude of my loss. I had two good female neurologists and they were ripped away from me when I needed them most. This is killing me. I need time to grieve. All this not being seen or heard and being required to fit into other people’s boxes I don’t fit just makes my heart ache and all I want to do is withdraw from everyone. Step out on faith? I can’t; not again for the umpteenth time. I need to eat what I like, keep to my routines, pace myself and not make too many changes too quickly. For me that’s a necessity; not a luxury.
Just when I thought things couldn’t get any worse…on Thusday, June 30th they did. Transportation came late and my assistant and I were worried we’d get there too late to be seen at Dr. T’s office at Emory Sleep Medicine at the 12 Executive Park location. The driver was confused and was about to take us to Clifton Rd. (main campus) but I told him he was heading the wrong way and he turned around just in time stating his GPS was taking him the long way.
There was no time for wrong turns. I was on a mission to bring airline forms to Dr. T. and Dr. V. (whose offices luckily were in the same building) regarding my oxygen concentrator.
I’d printed out forms for both Delta and United figuring those were the most likely two that the GA. Medical Care Foundation might book the trips with. I would need one or the other of the two doctors to sign off on my need to bring my oxygen on board the plane so that I’d run into no problems when it came time to travel.
We got off the van and went to the 4th floor where Dr. T’s office was located. We arrived to find a packed waitingroom. There was a heavy-set black female patient at the front desk carrying out a lengthy transaction to reschedule an appointment. She was wearing a portable oxygen concentrator and the young receptionist behind the counter lingered, typing on her computer. It seemed as though I sat there for 5 minutes. I looked at my watch seeing it was 10:45 already and still not checked in. The last thing I needed was to be considered late on such a crucial day.
The night before I’d sent detailed messages via the Patient Portal to both doctors so that things would would go smoothly and hopefully the forms for the airlines would be signed and handed back to me while I was there, but no such luck.
As my assistant and I waited I saw Dr. T pass through the receptionist area. I waived expectantly to her and she made eye contact with me and smiled her acknowledgement on her way in and out of one of the adjacent rooms. All the while I had no idea what was to come. I thought she’d be coming out to see me shortly, but the next thing I knew a portly, middle-aged white woman with shoulder-length wavy blonde hair called me back.
“Hi” I greeted her. “Are you the nurse?”
The woman stammered a bit and explained that no she wasn’t but that she’d explain. I followed her to a room on the hallway to the left-side of the receptionist desk. As we entered one of the rooms she sat behind a small computer desk and I in my wheelchair, across from her. Not wanting to waste another minute I launched into my request about the airline forms that I needed the doctor to sign. I explained that I was due to travel on July 6th, just a few days away. It was clear from her response that she was fully aware of my Portal message from the night before, but she stopped me in mid-sentence.
“Before you get started, I need to tell you; I’m the Office Manager. Patient Relations has been calling us all morning telling us that you’ve been terminated from the clinic and that we aren’t allowed to see you. I was going to save you the trip over here but it seems you’d already left. Because of the termination I can’t give those forms to Dr. T. She won’t be able to speak with you or fill them out.”
I felt suddenly as though someone had punched me in the gut. I could hardly believe that after all this that Administration was still placing obstacles in my way. It was at this point that the full impact hit me. Tears began pouring from my eyes.
“Look”, I said. “This is what happened. I was abused in the ER in December and instead of doing the right thing and correcting the problem Administration is covering it up.”
“I don’t know the story” she replied.
“Well now you do,” I said looking her dead in the eye. “I am honest as the day is long! They called in a sadistic neurologist to scare me and he beat me with his hammer, then had his female resident come back into the room afterwards and plop her butt down on my foot. Then he put defamatory things in my chart to destroy all my doctor/patient relationships so I could never get help. This was an impaired professional with an anger management problem.
Think about it. If I were what they’re painting me as I would be in a mental hospital right now after the past 7 months of harrassment Administration has put me through since the incident. You have no idea the tactics I’ve been subjected to. I must be one hell of a strong woman to withstand all that and still be talking to you rationally as I am now! This is not right! I was the victim, not the perpetrator and now I’m being punished for something they did to me!“
“That’s all the more reason why you should probably get your care outside of here and start somewhere fresh” said the Office Manager.
Tears continued to flow down my cheeks. “This cannot be allowed to happen. This is not the time!”, I pleaded. “I’m actively ill! It’s not like I’m coming in for a routine check-up. I really needed this appointment. I’m so sick that I need to go out of town to these top level specialists to get more advanced testing than I can get here, but nevertheless, I still need my neurologists here locally to come back to afterwards. Dr. T treats me for the Myoclonus. and Dr. V was fully intending to help me get these evaluations but Administration is sabotaging my trip!
I’m supposed to leave on July 6th! I don’t have time to start over right now with all new doctors. Don’t you understand? I’m sick and need to go soon so they can find out why! I’m waking up multiple times a night choking and gasping for air. My hair is falling out. I’m Dysautonomic and nobody knows why. They can’t do it here in Georgia!”
“I’m not a clinical person”, said the blonde-haired woman. “I’m just an Office Manager so I don’t know what to tell you in regards to that.”
“Also, I need those sleep study tapes because the specialists need to see my abnormal movements for themselves. The reports don’t go into enough detail although they had some EMG leads on me. The report didn’t document the rate of the jerking, only said that they picked up the movements but that they weren’t PLM. They are some sort of Myoclonus but they don’t know what specifically. They present at the onset of sleep and only under certain other circumstances like when I’m lying on a hard surface or my upper body gets too cold.”
“The reports will be good enough. The problem with providing the tapes is that it requires a certain kind of software to view them that’s not compatible with anybody else’s.” On the face of it that sounded a flimsy excuse at best, and at worst it may have been a lie.
“These out-of-town appointments took months to get” I continued, “and if I have to reschedule it could be up to a year for me to get another appointment…And also…I need to tell you something. I have (condition that can’t be named at this time) which is a neuro disorder; not psych, and therefore I don’t do well with this sort of disruption to my life. What they’re doing is really not good for me.”
The Office Manager seemed to soften for a moment. “I understand, and I empathize, but there’s nothing I can do” she said lamely. “Because we’re not a private practice the doctors here have to go by what they say to do. It’s now in the hands of Patient Relations.”
“Patient Relations is just a mouthpiece for Administration”, I replied. “They aren’t going to do anything. Do you want to know what their idea of an investigation is? They ask the perpetrators what their side of the story is, write it up, and send it to the patient. That is not a fair and unbiased investigation! I used to work as a patient advocate. I was instrumental in designing the Protection & Advocacy system in the state of Georgia. I never did my investigations like that!
I pulled the forms from my white 3-ring binder. “Here. Give these to Dr. T. just in case. Without this I can’t board the plane with my oxygen concentrator.
She needs to go to bat for me as my doctor! Have her tell Administration that blocking my care here and sabotaging my trip is putting the patient at risk. Have her advocate for me!”
The office manager looked at me from across the desk. There was a sense of futility in her body language. I found it increasingly difficult to look at her.
It seemed as though tears came in waves and then in-between got stuck and wouldn’t come out. I felt as though the wind were knocked out of me. I covered my eyes and leaned forward in my wheelchair teetering on my seat. I opened my mouth and no sound would come out.
Somehow it seemed especially cruel knowing that Dr. T. was just a room or two away but could not come in and speak to me. They didn’t even have the decency to let me talk with her one last time.
Even that being the case, all they had to do was have her sign my forms and bring them back to me but The Almighty GD Administration was like a huge fart in the room, rancid and putrid and taking precedence over everything that was rational.
The Office Manager was like a deer in the headlights, a lemming walking automatically over a cliff. Only one thought entered my mind at that moment. No job is worth casting a patient still in need of care out into the street to God-knows-what fate. The finality of it all fell like a thud to the floor.
After awhile she followed me out into the waitingroom, still packed with patients. I was still crying. My assistant was not where I’d left her. The Office Manager asked me her name, I told her and she said she’d try to look for her. At first she couldn’t find her but came back and took me back the other way to a waiting area that was less crowded.
“I’m just getting you more upset” she said turning to her right as if to leave.
“No you aren’t. It’s not you, it’s them” (meaning Administration). I reached out my hand and she took it. This was bigger than either of us. She asked if I could wait there for a minute and she’d try again to find my assistant. I nodded. In a few minutes she returned with her. The Office Manager explained to my assistant what she’d said to me about Administration not allowing Dr. T. to see me. I told her to ask Dr. T. to do everything she can to stand up for me.
My assistant turned to her. “So you’re basically saying that she needs to find all new doctors?”
“Yes, pretty much”, said the Office Manager.
“Let’s go call transportation” my assistant said to me, turning away from the woman in disgust. “We can do it from downstairs.”
“I need to give these other airline papers to Dr. V. on the 5th floor first and try to talk with her nurse before we go.” We headed toward the elevators in the main hallway. As we were leaving the Office Manager called out after us “It might be a waste of time for you to go down there because Dr. V. won’t be able to do what you need her to do, but you can try. Good luck with everything.”
The first one to arrive was too full, so we opted to wait for the next. Once on the 5th floor I approached the reception desk and asked to speak with J. Dr. V’s nurse and the receptionist told me she’d call her.
In just a few minutes J. came out and introduced herself. She told me Dr. V. was only here on Fridays. I told her the situation and asked her to ask Dr. V. to advocate for me and advised her to get in touch with the Union rep about this situation because Administration is putting pressure on medical professionals to act against the best interest of patients. She said she would and wrote some notes on a small post-it pad.
I handed her the airline forms and asked her to give them to Dr. V. The nurse said she’d call me. Once we’d gotten home I checked my phone messages and found both the confirmation of that day’s appointment and a later message from A.B. of Patient Relations stating the appointment was cancelled. The following is a sound file of the confirmation and the message from Patient Relations.
By the time my assistant left at 3:30 PM on Friday no call from the nurse had come in yet to confirm that the form had been completed and faxed over.
The next call on the tape is from a contact person at Medicaid informing me on June 1st that the GA. Medical Care foundation had still not received my paperwork from my doctor. Late last night I saw a Patient Portal Message. I logged in and it was a goodbye letter from Dr. V.
Corporate had prohibited her and any of my other doctors from seeing me. A message just underneath from the nurse which merely typed the instructions for the GA. Medical Care Foundation process implied that the paperwork had never been filled out or faxed, thwarted by the top brass at Emory Healthcare.
No reason was given to Dr. V for the “release” as Corporate so euphamistically referred to the expulsion (as the real reason; discrimination and retaliation for filing a complaint is against Federal law so they wouldn’t admit to that).
I wrote back to her telling her that I don’t think I can bring myself to start over again with a new neurologist, that I wanted to keep seeing her and that maybe she should contact the Union and tell Emory to take this job and shove it if they wouldn’t budge on this issue.
I left her my number and asked her to call me if/when she goes into practice somewhere else. I said that there is a shortage of good female neurologists in the Atlanta area and especially ones who really care about patients, and that I could tell she does. When you’re ill like I am and have been through what I have, being more than just a number, having a doctor who cares if you live or die and is truly invested in you is especially important.
Until I’d spoken with the nurse the other day I thought she’d worked there fulltime but in fact it’s only half a day on Fridays, so I guess it wouldn’t be any big financial loss if she decided to tell them to stick it up their collective posterior!
I cried most of the night and woke up crying again this morning.
We are not a bunch of chess pieces (patients and doctors) for Administration to move around at will!
We are people with real relationships! To destroy those relationships which can even determine life and death for a patient is to do harm!
Logistically I don’t know what will happen to me now or who will fill out the forms necessary so that I can get the care I need.
What the suits in the ivory tower fail to understand is that in order to do those kinds of things a relationship, a connection must be there and the doctor has to care about you. You can’t just find that in any doctor, and if a patient finds a good one it’s best to keep them.
I looked out there plenty before I saw Dr. V and after the first appointment (knowing Emory had her by the short-hairs) and I didn’t find it. Then as I got to know her I realised she was it. She would have done all that…if Administration hadn’t in effect held a gun to her head not to.
If you are a patient who has been mistreated at Emory please see this post; and contact me privately to give me your written signed statement. It’s never too late to make your voice heard.
Nothing about this diagnostic process has gone smoothly, but transportation was the one thing I thought was wrapped up. I’d called Southeastrans (Medicaid’s transportation broker for this area) a month ago to find out what the process was and was told that they’d schedule these out-of-town trips just the same way as they did the in town trips; that I just needed to call their main scheduling number and they’d set it up.
Meanwhile I set about requesting all the necessary medical records (two discs for each of the two doctors).
The sleep study tapes were elusive and I found out that Radiology nor Medical records has those accessible; that they were handled by another records department connected with Sleep Medicine. After about a full 2 days I finally got routed to the right department, but initially only the latest sleep study (July 2015) was showing up in the computer database. I had 3 sleep studies in all (each of which yield important data that any top level specialist will be able to see the significance of in the diagnosis of multi-system disease). Researchers who are up on the latest medical knowledge understand that sleep studies are often the first sign of such disease processes and they give important markers that may not be fully detectible via other tests for years. Finally after much searching around somebody suddenly located the other 2 tapes and I was told they were being copied onto dics as we spoke.
I suddenly found that people who answered the phone in the various departments and call centers were greeting me in an uncharacteristically friendly and helpful way, asking if I were “having a good day”, some almost as if they knew who I was, and this time when I called to schedule my follow-up appointment with Dr. V. the appointment went through! Suddenly people were actually returning my calls again and they were not proxys but those whom I had asked to call me back!
It remains to be seen whether or not everything is unblocked now since they received my cease and desist letter. I hope it is and that I will have no further blocks on my scheduling from here on out. I have since received no explanation via Patient Relations nor from Administration directly as to whom initiated the block and the circumstances under which their Chief Medical Officer was called in.
Good old Dr. H. the pulmonologist may have helped me much more than he knows. Even if he (the subjective human) has or had doubts in the short-term about my underlying condition(s), his objective data reveals important tuths that can’t be denied. Within these studies could lie the key to my underlying condition(s) and when viewed by the right specialists who understand patterns and correlations it could be my salvation, and will very likely get my treatment back on track.
Maybe in time he will come to understand that his hunch about a central process in the Pons and/or Medula was correct all along. (Afterall, that was one theory as to why I had the slowness of muscle transmission in my left leg EMG results). Not that anyone would want something to be wrong there, but sometimes a doctor’s admitting he was wrong in his doubts of his first instinct and the patient’s instinct is the best thing for the patient and for the doctor/patient relationship. If the underlying condition(s) can be identified, caught early enough, and treated with the best science has to offer, maybe all’s well that ends well, and all of us can go home satisfied.
I have always and will always maintain that my team of doctors need to keep their eye on the ball and avoid becoming waylayed and distracted by other agendas. The doctor/patient relationship is paramount, and anything that stands in the way of it must be removed. Such distractions are exactly that; distractions, and must be put aside if one is to serve the best interest of the patient. This is an ethical and moral imperative above all else.
There is enough evidence now that something serious is going on in my body, and so I hope from here on out my doctors can dispense with any questions they may have had in their own minds as to that reality, so that we can put our collective effort into finding out what that is.
Well, back to the transportation issue which pulls all this together; I called Southeastrans last week to set up the trips to these two out-of-state specialists and suddenly got the response from the scheduler “We don’t do that.” The scheduler got her supervisor on the phone and she told me that even my Florida trip was too far for Southeastrans to travel; that their broker system only takes people within a 50 mile radius. She did not know of anything else. My heart sank. Knowing that this is a major consideration and that I cannot afford to cover transportation out of pocket with my tiny Disability check amount, I persisted, asking what the process is to get it authorized, as I knew I’d heard from other patients that they were covered for longer-distance trips, especially when their home state did not have the proper testing facilities and specialists and were at an impasse. Surely they couldn’t just leave indigent patients up a creek without a paddle.
The hotel in Cleveland Ohio has been booked, appointments have been made, and records have been ordered on disc, along with many hours of logistical telephone calls, blood, sweat and tears on my part. I have done the majority of the work myself to facilitate these independent evaluations and I was going to be damned if a technicality so idiotic would stand in the way now. I called the Medicaid Commissioner’s office whose aid then put me in touch with another department and there I spoke with a man and a woman who basically told me it was not going to be a problem; that all I had to do was have my doctor fill out a form with a foundation affilliated with Medicaid that would cover airfaire, lodging, and food for my trips, but advised that my doctor start the process right away since time is running short.
I’m supposed to be boarding a plane bound for Cleveland, Ohio on July 6th, come home Monday afternoon the 11th, and then head out to Gainesville, Florida early the morning of July 13th to arrive there at 9:30 AM for a full day of testing. It required my scheduling the Cleveland Clinic appointment 3 months in advance, and the one in Ganesville, FL, 6 months in advance. All their other doctors were booked a full year in advance, so I was lucky to get an opening in 6 months as it is!
I couldn’t imagine there would be any problem in having Dr. V. fill out the certification form so that this non-profit organization could ensure these evaluations came to pass, but I was wrong in that assumption.
My detailed message containing the process, foundation’s phone number, and my necessary information sat on the Patient Portal for about 2 days un-forwarded (Dr. V. was unaware of its contents since somebody else needed to forward it to her first). As soon as I realized the doctor had not received it herself I called by phone and was told by a representative in “Brain Health” that she would then mark my message “high priority”.
Soon afterwards I received a reply with a nurse’s name on it as though she were forwarding a message from the doctor asking me to ask my new GP to fill out the form instead (the new GP who does not work for Emory). I could not believe this! There is no time to waste, and besides, why would Dr. V. not fill out the form when she herself wanted me to have these consults? It didn’t make sense. This is one delay that could throw a monkey wrench into the whole thing, and I don’t know how long it takes to process once the doctor does fill it out and submit it through the proper channels. My first date of travel is about a week and a half away (not counting weekends), and nothing is nailed down yet! I wrote back saying I would ask the new Primary Care doctor (Dr. P), but that if she says no and feels it’s the job of my neurologist to do since these are neurological consults, then I will still need Dr. V. to do it. I impressed upon her that time is ticking away and I can’t afford for anything to go wrong. I have not put in all this work and effort just to lose this opportunity.
With no local autonomic clinic close by, and my abnormal movements being not your average garden variety movement disorder, these doctors (if they care about me) should move heaven and earth to see that I make it to both appointments and do everything they can on their end to make it happen. It’s just the right thing to do.
After I got off the Patient Portal I immediately wrote a letter to my new PCP with the same request I’d sent Dr. V and faxed it to her. I have since found another fax number on some other paperwork from her office and am faxing it to that number as well (to make absolutely sure she receives it).
I hope to God that when I follow up on Monday that I’m told it’s been done and being processed by the foundation that issues the funds and makes the arrangements and that all this will be in time for it to go off without a hitch! It hasto! I don’t think I can wait another 3,6, or 12 months to reschedule and arrange this over again.
It seems as though these big healthcare corporations are devising boilerplate FU letters to send patients when they’ve messed up and mismanaged somebody’s care and want to shift responsibility. Such letters are very unwise. The thing is, they will not hold up under federal non-discrimination laws and patients will prevail. Any legal department will clearly see that and advise the corporation to retract such actions.
It’s always a wiser tactic to do the right thing when you realized you’ve F’ed up a patient’s care and do something to correct it and satisfy them from that point forward than to follow one bad decision with another, follow one lie with a bigger lie. In the end no amount of money or image is worth covering up wrongdoing and throwing the patient under the bus. This is the care of human lives we’re dealing with here, not inanimate objects. Earn that image and you’ll have no problems.
There really is something to be said for going that extra mile for the patient rather than doing the least you can do or standing in their way. In healthcare even more than other businesses, true customer satisfaction is very important.
I sincerely hope that Dr. V. will come through when all is said and done and that she will have safe passage to help me maximally, unfettered by competing interests and unbeholden to her employer. As I said earlier; the doctor/patient relationship is paramount. I want to trust that in the end she will put my best interest first no matter what comes. I cannot be let down by one more neurologist.
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.
The cover picture I chose for this post is a sign I keep on my wall as an affirmation, visible from my bed. In the light of all that’s gone on lately I am struggling to hang onto my self-esteem and have periods of self-doubt in which I begin to wonder. You might have noticed that the letters aren’t straight; that they veer up from left to right. (More about the significance of that later).
First, I received a letter from Emory’s Chief Compliance Officer, A.A., stating they refuse to ban the offending doctors from access to my electronic records (she says “for purposes of billing”). I had to laugh at that one, as it seemed the epitome of irony that they should even think about having these morally sick and impaired “professionals” paid by insurance nor by any source for that matter after how badly they mistreated me. Emory is out of its collective mind if they think these people should be in any way rewarded for abuse and neglect! If the hospital wants to stand by these criminals then they can just eat the cost as far as I’m concerned, and I’m actually considering sending each of the 4 doctors a bill of my own for wasting 9 or 10 hours of my time, for the mistreatment (physical and psychological) and failure to render aid, and for the libel that still sits in my chart because of their malice and irresponsibility for which I will have to incur additional costs to seek specialists out of state.
Some patients have started billing doctors who are late just like they do with late patients, so that gave me an idea that I should do the same for how these people compromised my care and are now causing a delay in it because of their actions (not to mention the intentional infliction of emotional distress inflicted by Dr. P. R. M. when he administered his interrogative neuro exam). The guy is clearly a narcissist and scouted me as someone he thought would make an easy victim because he knew I’d been abused as a child through Piedmont’s social history record. Like any predator he saw an opportunity and he took it. He gave a phony (non)apology to the “advocate” to pass on to me, saying “I sincerely apologize that you weren’t satisfied.” Now that’s just gross!!!! Ewww… Why would I be??? He was beating me! Sorry bud, but take that somewhere else. I’m not into that!
What I hadn’t anticipated was just how much of this approach was being adhered to as a “team” by all 4 doctors and just how duplicitous Dr. H was in the organization of my “treatment plan” while in the ER that day and evening. I was not thinking “conspiracy” when I was there, believing that each person was acting separately on their own as individuals, but now after receiving the letters from the “patient advocate” and Dr. H’s manager I now know that’s actually what it was; a conspiracy to discredit me (probably because I was expressing that Emory had moved too slow thus far in getting me to the clinic that could help me, and now I was severely disabled, and I guess they didn’t like dissent). If I’d been the mental case they were trying to paint me as I would have been “paranoid” (in their eyes) and would have picked up on the fact that their approach to me was organized, but to the contrary, I was entirely too trusting. I believed everything Dr. H told me and totally fell for her trick; her phony kindness. I believed she’d prevent anyone from hurting me and the whole time unbeknownst to me she was setting the stage for me to be hurt. Trusting too much (and the wrong people) indicates something else (for which I am arranging an assessment as soon as a particular expert gets on the panel to accept my insurance in about 3 months).
To this day I have a hard time aligning my emotions with my logic when it comes to Dr. H, and that’s scary. The others I can work up a good firm anger at, but her; I just feel profoundly hurt by. What she did was so sneaky that it confused me. Part of me still wants to work it out with her but my logic tells me she’s not a safe person. She hasn’t emailed me again and I guess that’s just as well, although I wish I would have gotten an explanation from her directly (even if she was going to lie) instead of her hiding behind other people like a coward to do her talking for her. She owes me that at the very least.
I realize now that this vulnerability has caused me problems with others I’ve known in the past who were two-faced and in the end totally took advantage of me and tore my heart out. I need to close this gap as soon as possible, but how does one do that and still let the good people in whose kindness is sincere? How does one not become jaded and start questioning everyone’s motives? I naturally tend to take people at face value and I kind of like that about myself, but it has bitten me in the butt a number of times. I sure hope this is something I can do something about and that I’m not forever broken in my ability to tell the difference. Now that all false friends have left and I have a clean slate this is a big thing. I don’t think I can survive another hurt like this. I need to get it right the next time I do trust someone.
Getting back to the topic I brought up earlier about the sign I have on my wall; I am thinking that what I have may be generalized dystonia of some sort and possibly part of a larger syndrome. Last night I watched an interesting speech on Youtube by Dr. Steven Rich, a movement disorder specialist about Atypical Parkinsonian Disorders and found out that in several of those, people have Dysautonomia. He says that in early stages of Multi-system Atrophy for instance, people can have falling within the first 6 months of symptom onset, difficulty getting up from a sitting position, a stiff gate, and symptoms such as rigidity or spasticity, other upper motor neuron signs, and Dysautonomia. Apparently some people are misdiagnosed as having Parkinson’s disease or not diagnosed at all because brain scans can look normal. They don’t always show findings. Often these conditions are made by clinical diagnosis and somebody who knows what they’re doing can put 2 and 2 together from the group of symptoms a patient has.
I’ve been learning also that Dystonia can be primary or secondary just as Dysautonomia can. I’m finding out that my MRI findings may be alot more significant than doctors who read them knew; that C1 and C2 vertebra misalignment and TMJ problems are often indicative of Dystonia and that I may have had that since I was a child in my neck and then as I got older it progressed to the other areas of my body. I’ve noticed for awhile now that my head is often cocked to one side and the sign on my wall slanting upward corresponds with the way my head is positioned. It’s very difficult for me to write straight. I’m always needing to straighten my shirt collar so it is centered on my shoulders because it tends to slide over to one side because my shoulders are tipped one slightly lower than the other. Also tonight I notice that my whole face is off-kilter; jaw, mouth is crooked, nose, and the way my head attaches to my neck is off.
My eyes which I had surgery on a number of years ago because they wander outward are now slipping really badly. I definitely don’t look quite right.
This past year my Dysautonomia has been worse than ever before and I’ve had alot more near fainting spells than I’ve ever had, the colon spasticity didn’t start until 2015 but I’ve been chronically constipated for years, and then finally at Piedmont hospital they documented the blood pressure instability. I faxed those records to my GP that I had to obtain from another department, and they were quite erratic.
Something else odd I’ve noticed happening in the past few weeks is that there are times when my feet get purple or blue for no apparent reason. They don’t feel different, just change color, and it often happens when I’m sitting down on the shower bench. Here are some pictures of what it looks like but they were worse than that before I dried off and was able to get my camera. Also the flash makes it not show up as dark as it actually is, but you can see it somewhat.
In this picture you can see the left foot still pretty purple all over, even down the big toe before it started going back to a more normal color, but the top of the right one had already changed.
Over the past week I’ve had several episodes of urinary urgency which don’t seem related to a bladder infection but most likely are from Dysautonomia. One of them today came on when I was in the kitchen so fast I almost had an accident, but was barely able to get it to stop by squeezing it back upward with all my might and then strangely I didn’t need to go.
My heart was doing some weird things the other night too, as if it was beating very weakly but I was flooded with adrenaline at the same time.
I now have an appointment with a movement disorder specialist out of state but the doctors in the specialty clinic are highly sought after and so I’m going to have to wait 6 months to get in. They are going to put me on the list in case there’s an earlier cancellation just in case. This guy has written a ton of research papers and is currently funded by NIH to do a study on Kinesiology for atypical movement disorders, so he sounds pretty open-minded.
Home healthcare is about to end its certification period in just a few days (the 29th) and my doctor needs to recertify it soon. I have not heard yet that he’s done it. He needs to have a plan in order for it to be covered and I don’t think he knows exactly how to do that but is supposed to be talking with the Care coordinator about it and how it needs to be written.
I need to get some longer-term services in place like the Independent Care Waiver and an agency that does these kinds of things and more like cooking and grocery shopping, but for the Independent Care Waiver I need to have an evaluation for a better wheelchair so I know what specs to put on the application. Shepherd Center does these evaluations with pressure mapping so that you get things just right for your body. The Hoveround I’m using now is OK for inside the house but I really need one that will recline and has a head and neckrest for when I need to go to the doctor and have to be out a few hours.
So far only one person has contributed to GoFundMe. If you would chip in whatever you can afford I would much appreciate it, and also send your friends and family over to my page. My income is so low I’m not even making ends meet and there are more expenses coming up. In addition to this one trip I’m making in 6 months I most likely will be going to the Mayo Clinic which involves about a 2 week stay and from what I understand you have to stay in a hotel and I don’t think that nor meals are covered.
I’m hoping for some good news about something soon! There are so many barriers to things right now sometimes I start to lose hope for the future.
PatientsRightsAdvocate.com 