Thinking back on the past several months to trace the timeline of my fall from grace at Emory brings up uneasy correlations, ones I wish I didn’t have to see, but the truth is beginning to show its ugly face and boy is it ever ugly.
As awful as it is, I’ve always said that if a highly venomous snake is in the grass I’d rather know where it is rather than not and to step on it and have it bite me. This is one of those instances in which ignorance isn’t bliss; it can get you killed. I stepped on it and it bit me alright and now the venom is systemic.
It seems the electronic records are abuzz now with gossip, all of it unsubstantiated of course, but nevertheless treated as fact because of the fact it is couched as “professional opinion.” It is still libelous; make no mistake, and it is costing me in quantifiable ways.
After what’s happened to me I have to go on the assumption that there are some wolves in sheep’s clothing over there at Emory not acting in my best interest. There is plenty evidence now that bears that out. Now I know why Dr. B would not answer certain questions in writing and why he insisted I come in to his office before fessing up to his core beliefs, and at that it was just he and I in the room.
Perhaps he was the biggest false ally of all, but after 12 years one can’t so easily just shift gears and go “Oh well, so much for that” and go on unscathed. Of course I would have some feelings about that. Not crazy; just a normal part of the human condition when you discover that someone you trusted for 12 years has betrayed you in such a painful and treacherous way, somebody you trusted with your very health and life.
I went for 10 friggin’ years not asking for anything but to have my maintenance meds refilled, I’m not a frequent flier in the ER, and one year I literally couldn’t get my medications refilled by phone because I hadn’t seen him in a year. I came in at his request! He’s offered me stronger pain meds than Tramadol several times and I turned them down; so I’m not a “drug seeker”. There really is no valid reason for him to be managing my case as if he’s some sort of strange probation officer instead of my doctor.
And another case in point; just the other day when he’d stopped writing all orders it was he who wanted me to come in, saying I hadn’t seen him since my hospitalization at Piedmont.
I have not even really seen alot of doctors since the incident at Emory’s ER because they scare me now, but I forced myself to go to the follow-ups I had already scheduled months ago, and given the circumstances of my recent decline it is not unreasonable to increase the pace now. Very little in the way of testing or treatment has been done in the past 10 years, and even after I’d started developing new symptoms I stayed patient for the better part of a year and tolerated delay after delay, so how in the hell he is translating this into “You think you have everything” is beyond me.
I know now that in the context of his interactions with these 1-time neurologists that he was looking for things that would invalidate me. He just didn’t have the balls to come out and admit it and wanted the neurologists to prove his point that he harbored within himself for God-knows exactly how long.
I guess he was smugly self-satisfied when Dr. M tried to say I was completely out of my gourd with nothing neurologically wrong or faking it because then he didn’t have to do any work for me. That was why he didn’t seem to care that he was implicated by him as well, and why he had little or no emotional reaction when I told him what happened and how I’d been abused.
Maybe he’s one of those who also believes that waterboarding and the other atrocities performed at GITMO were OK because the ends justify the means. Maybe that’s why he failed to protect me when I went to him for help. Maybe secretly he thought I deserved what I got and that I must be a bad person.
And now that Dr. V (despite her flaws) is validating that there is an underlying neurological condition he doesn’t like that because he can’t just dispense with me and write me off as an “hysterical” patient. There is clearly an agenda to avoid doing his job. That is crystal clear after the conversation in his office the other day where he discounted my BP records from Piedmont Hospital when they were in black and white not subjective, but objective data!
He’s right about one thing. I am very intelligent (and because I am, people may fool me for a period of time, but they can’t do it forever). Eventually I will find out if they are screwing me around. All the evasiveness in the world isn’t going to give them a stone to hide under.
I carry several diagnoses already documented in their system that are incurable, chronic illnesses and conditions; Sarcoidosis, Fibromyalgia, Central Apnea, Biot’s Respiration, and Myoclonus. These have been confirmed and reconfirmed.
Gaslight as they may, Emory and its bad actors are not going to succeed at this bullshit forever. I am a human being, damn it! I deserve the same dignity as anyone else and I do not deserve medical neglect nor abuse! This is not unreasonable for me to expect.
So what if my case is complex! I never asked for that. I didn’t choose it. One can only play the hand their dealt. I can’t make my body do anything beyond its capacity and it’s not my fault they (the doctors) can’t figure it out and that it’s taking a long time. Beating me up over it sure isn’t going to solve anything. It only adds insult to injury.
When I think back on it, it seems that he started behaving differently toward me in September or early October when he was supposed to refer me to a specialty neuro clinic and oddly the department and the nurse from said specialty clinic told me there were things missing from the record. They made it sound as if pages were missing but it all makes sense now.
Dr. B had made a comment to me on the Patient Portal about what the nurse in the clinic told me about missing records “I find H.D’s explanation lacking. That’s all I will say.” I had a pang of visceral fear when he said that and knew something was up but just couldn’t figure out where it was coming from.
He must have set it up to fail because he thought these things about me then. Apparently he was a wolf in sheep’s clothing although I did not know it at the time. I’d told the other clinic that I trusted him after 12 years and that if he told me he’d sent a proper referral I believed him. Too bad that trust didn’t go both ways.
Interesting that Dr. T’s (temporary neurologist in the sleep center) referral sent to the same clinic had stuff “missing” too. Hmmm. For a time I’d wanted to see her as my regular neurologist since she did hit the nail on the head in treating my myoclonus with Keppra, but now I’m not so sure what to think. This is all beginning to look like a circuitous game of “telephone” but a very duplicitous one!
Somehow her reason for not taking on my case fully being that she was “this sleep person”, claiming she wasn’t qualified enough but then initially wanting to refer me to yet another general neurologist, though with her background in movement disorders they’d probably be less qualified than she, just didn’t add up.
I remember back in September I thought he’d written an appeal to Maximus, this external agency that handles 3rd stage appeals for Medicare Part D. I was applying for an off-label medication to be covered on my insurance and I asked him about it and he said he’d never heard back.
Then I sent a letter to the Secretary of HHS and told her how difficult to get off-label treatments covered and she said she’d contacted Maximus and that neither they nor Humana (the Part D private carrier) had any appeal in their system. I called both and spoke with representatives at great length and both agencies scoured their database and all they found was my earlier appeals that I’d filed myself.
That was when I started to suspect something wasn’t quite right about his story. Now I am almost positive he wasn’t honest with me about sending the appeal in at all.
I would sure like to see the clinical notes of these doctors. From now on I need to get a copy of all clinical notes when I leave each appointment. The only trouble with that is that these doctors can still chart on me afterwards and I don’t know whether I’ll have them all.They can also edit their notes after I leave (which is not good).
Having worked officially as a patient advocate I know alot of the “tricks” they use, and just how damaging irresponsible charting can be to patients. It can literally make the difference between getting necessary treatment and timely testing, or not.
This also brings me to another uneasy question. Why did doctor B stall on sending Shepherd Center his doctor’s notes? Was it because he’d been back-stabbing me in them and it would be clear to anyone who read them that he was not in fact really trying to help me?
Furthermore, why has he been leaving all the legwork to get these evaluations to me to do when he refuses to treat me himself and wants these other doctors to be the ones to take responsibility for my care?
Anyway you slice it, there’s something fishy in Denmark.
Maybe my original reading of the situation when I came into Emory’s ER was closest; that the whole Emory system had failed me, and still I sit here disabled and minimally treated, things still moving at a snail’s pace, but worse now because on top of it I am finding that I really have no support system. It was just an illusion.