Safety for People with Autism and Other Hidden Disabilities

Red Medical Cross Picture with White Medical Symbols Inside It

Attribution given;  <a href=”http://www.freepik.com/free-photos-vectors/background”>Background vector designed by Olga_spb – Freepik.com</a>

I missed a week of blogging due to the difficulty I’ve been having with my Dysautonomia and my ASD (Aspergers) and the effects of the trauma from what has happened at Emory. I’ve experienced several full-on meltdowns due to all the stress and the barriers I’m encountering in trying to get my healthcare back on track.  

Meltdown

I’ve been having fitful sleep interrupted by nightmares which are clearly due to the bullying I’ve suffered. The theme is always some sort of sabotage. In the nightmares I’m trying to achieve some goal and somebody comes along and destroys whatever I’m doing and I end up in some sort of danger as a result.

In one such bad dream I had lit a match in order to relight the pilot light on a stove and someone came up behind me and knocked the match out of my hand.

Closeup of a business man with his hands behind his back and fin

Closeup of a business man with his hands behind his back and fingers crossed. Torso and hands only, man is unrecognizable.

It fell from my hand and behind a dresser. I tried pushing the dresser aside but it was too heavy. Meanwhile the room quickly burst into flames as the fire spread from the carpet to the drapes and soon everything was engulfed. I then found that I couldn’t move to escape it no matter what I did. Just as I was about to be burned alive I woke up in a panic. It took quite awhile before I could fully come out of it and realize it wasn’t really happening.

Burning Up

In another dream  I was getting ready to mail a very important letter and I was in some sort of cabin in the wilderness that was at the edge of a steep canyon. In order to mail the letter I had to climb down somehow on the edge. There was a crack in the wall handmade from plywood overlooking the drop below and the letter got stuck in that crevice. I tried to pull it out and was relieved when I could do it, but as soon as I did, along came somebody from behind me who swiftly pulled it from my grasp and shoved it through the crack in the wooden wall. The letter fell and was gone hundreds of feet below, never to be retrieved again.

House at Edge of Cliff

Alot of times the sabouteur comes from behind me and I don’t see their face. I can’t tell if it’s a man or a woman because they never say anything and I wake up before I can turn around and look.

In addition to the element of danger in these dreams there is alot of uncertainty.

Out-On-A-Limb-450x322

All this got me thinking about just how crucial it is to build a plan for safety. People with Autism and other hidden or misunderstood conditions are especially vulnerable to abuse and neglect in a number of settings; for instance, police officers often mistake people with epilepsy for being publicly intoxicated,

Glowing brain

and many people with such conditions as Autism, Dystonia, and Dysautonomia as well as other poorly publicised conditions are mistreated in healthcare settings just as I was.

This is something that is not spoken about nearly enough in the news or in other public forums but doing so may very well save lives.

Here are some things you can do to help prevent falling victim to those who might abuse, neglect, or exploit you thinking you’re an easy target because you’re in a wheelchair, you’re frail, have communication or cognitive difficulties, or have other disadvantages which may leave you in a compromising position.

Safety First Life Preserver

1) Wear a medical alert bracelet;

Try to get as much pertinent information on it as possible that people would need to know in an emergency and/or if you are misinterpreted in the workplace, school, by medical personnel, or law enforcement, or in any other public place.

If you can, list a contact person you know who is willing to be contacted and can advocate for you to explain your needs. Nowadays there are many types of bracelets on the market that you can buy. Some of them are even nice looking! See some medical alert bracelets on Etsy .

2) Carry a medical alert card at all times;

You may be able to fit even more information on the card than you can the bracelet but you should try to have both since somebody may not think yo look in your wallet if you are unable to tell them to do so. This organization came up with some Autism Alert Cards you can customize. This company located in the UK sells bracelets that include cards with them.

3) Carry an official diagnosis document at all times;

this can be any official letter you have which proves your diagnosis (if you have this documentation). If not, you should speak with someone about obtaining one. This can be a testing report, a letter from a doctor or therapist written to whom it may concern, or if neither are available, something from your medical record with your official diagnosis on it.

Taking notes

Ideally you should have something not only listing your diagnosis but specifying what your limitations and special needs are, any medications or treatments which need to be given, etc. If you have a supportive doctor or other medical professional, his/her name and contact number should be on this paperwork if at all possible.

4) Bring a buddy with you to the hospital;

In the ER

If you have some advance notice that you’re going to the ER or checking into the hospital on direct-admission try to arrange for somebody to come with you.

Emotional Support

It should be someone whom you have spoken with in advance about your needs and limitations; preferably somebody assertive who will not have a problem speaking up to authority figures in your defense while still remaining calm and rational.

This person can keep an eye out for you and can also act as a witness in case anything goes wrong. If they have a cellphone they can also videotape if somebody is mistreating you.

On Cellphone

If you don’t have anyone in your life to fulfill that role be sure to contact one or two people before leaving and let them know which hospital you’re going to (and if possible give them the phone number so they can call and check on you). Bring your laptop or some other mobile device that has internet access. That way you can give them updates.

Making Plans

One of the things I learned as a patient advocate years ago is that people who have someone actively checking on them are less likely to be abused or neglected because it’s more difficult for perpetrators to get away with it and the likelihood is that they’ll get caught. This is often enough of a deterrant and they won’t even attempt it. (I’m pretty sure that if I had had somebody willing to go with me or meet me at the hospital in December that my incident wouldn’t have ever happened).

Taking these steps can’t guarantee you will never be victimized but they can make it much less likely.

If you do find yourself in a situation in which you’re abused, neglected, or exploited, be sure to document as much as you can about exactly what happened. Take down names, times, dates, what they did that they shouldn’t have, and/or what they didn’t do that they should have, etc.

Then I would recommend contacting The Dept. of Health and Human Services and filing an Office of Civil Rights Complaint.

Filing with State regulatory agencies in my experience is often a complete waste of time, as usually doctors are automatically believed carte blanche by such decision-making bodies and therefore it is not a level playing field. Usually such investigations consist of review of the records to see if anything “not meeting the standard of care” is documented (and of course doctors aren’t going to rat on themselves or each other in a patient’s record), they write up the perpetrator’s side of the story, and send it to the patient.

In some of the more progressive states filing a complaint with the state medical licensing board might yield results if the malfeasance was committed by a doctor, but often doctors are reluctant to discipline their peers (the medical boards utilize doctors to investigate the claims and determine the outcome, if any). Generally they have the option of making any action taken either public or private. If they take private action they might keep that secret and not even let you know they are doing anything about it at all.

How You Can Help Now;

You can also send letters now to HHS asking that they make Institutional Bullying of medical patients/people with disabilities an added Civil Rights violation in the same way it’s interpreted in statutes for Institutional Racism. Please also ask that clear-cut consequences be specified in any new legislation and/or amendments.

capitol-diagram

Given that this is an election year this is the perfect time for you to send your letters! The more of us who write and make our voices heard the sooner we can make this type of abuse a thing of the past and prevent others from having to endure these atrocities in the future.

 

Sylvia Burwell 1250x650

 HHS HeadQuarters                                                                        

US Dept. of Health & Human Services                                

Attn: Secretary Sylvia Burwell                                                  

200 Independence Ave., S.W.                                

Washington, D.C 20201

Phone (Toll Free); 1 (877) 696-6775

Go here to file your official grievance if you have been discriminated against because of your condition and/or not given reasonable accommodations for your special needs. You can file by snail mail, email, fax, or via their online webform. (All communication options and requirements are explained on their website on the paged linked-to above).

Safe place .svg

Although this is covered under current law there are still many people who unfairly make allowances for it when this happens to people who are ill and/or disabled in a way they would not with other minority groups. There should be a zero tolerance policy for this type of discrimination and a recognition by all that this is every bit as heinous (in many instances even  more so because this population is at a greater disadvantage than most other minority groups)

And now for a good protest song;

This Land Is Our Land

 

Advertisements

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.

 

 

Medical Record Inaccuracies and Doctors’ Personal Agendas

Doctor in the office

Good charting is a skill that can be learned, but when the basic ethical principles involved are not adhered to it can actually do patients more harmed than good. As they say “The pen is mightier than the sword” and that is so true!

Charting on a patient carries power, but with that comes responsibility to carry out this activity with grace and selflessness, never forgetting that you are commenting on aspects of that person’s life and this very act can influence how the patient is treated  by others who read it. One must resist the urge to “think out loud” in a patient’s medical record where such conjecture might not be in the patient’s best interest and thus hinder their care.

Hot idea

Doctors, if you are using a patient’s medical record to further your personal agenda or hypothesis in conflict with the patient (or with another doctor indirectly) you are not benefitting your patient, so please stop it.

Stubborn as a mule

The medical record is not your personal journal, it is not the place to grandstand, to take shots at the patient, to show your ego, nor is it the place to take out your frustrations from home.

Given the fact that you assume the patient will not likely read what you’ve written it might be tempting to fill the chart with your own bullish rehetoric, but this says more about you than it does about the patient and therefore it does not belong there.

Buffalo in winter cold

When I worked officially as a patient advocate under the federal Protection and Advocacy system devised in 1986 by legislation enacted by Congress I attended extensive training sessions on various aspects of the job and I learned alot about what a proper chart is supposed to look like.

We used to have an independent contractor evaluate all advocates’ charts on patients nationwide, and my charting was actually deemed the best in the country of all Protection and Advocacy systems.

Taking notes

There are certain principles that exemplify skillful charting on a patient.

1) Charting must be accurate and precise

2) It must be relevant

3) It must be written to benefit the patient

Accuracy and Precision 

This is pretty self-explanatory but there is often confusion as to how to interpret what is “accurate” and what is “precise.”

Let me start by saying that you are only resonsible for charting what you know to be a fact. This does not mean that what you don’t know is not a fact; one to be disputed in the chart. For example; upon receiving my doctors’ notes last week, I discovered that my pulmonologist had written some things attempting to question my diagnosis of Sarcoidosis. Why he would do this when Emory has already confirmed the diagnosis seems suspect in and of itself and smacks of personal agenda.

My diagnosis was obtained by objective tests 13 years ago. 

I had a Gallium scan and other test results such as labs which showed idiosycratic markers for the disease. That is a fact.

There is no disputing that, yet the doctor did. It is true that a follow-up gallium scan this year indicated it was probably not actively in flair now, but that does not invalidate the diagnosis itself. It only means it’s not in flair at this point in time and indicates that my current symptoms are coming from something else. It has not magically disappeared as it’s a chronic and incurable disease. It’s possible that this pulmonologist may be using outdated understanding of the disease (long ago it was believed to spontaneously “go away”), but this has been disproven with the advent of more understanding of the physiological workings of the disease.

Sarcoidisis was once thought only to be a lung disease (hence why it’s often treated by Pulmonologists), but now it is known to be a multi-system disease that can and does affect every part of the human body. It was once thought to be only characteristed by non-caseating granulomas, but has since been shown to be much more complex than that and its inflammation manifests in many more ways than once believed.

It is now undrstood by the top experts in the field to be associated and most likely caused by intracellular pathogens. It is not merely an autoimmune response after an offending pathogen has been cleared from the body, but instead the resulting inflammation is a response of the body detecting a pathogen it just can’t locate and effectively kill.

My Pulmonologist, Dr. H perpetuated further inaccuracies when he charted that my Dysautonomia was “self-diagnosed” and and in his insistance on continuing this assertion in the medical record pretty much accused me of lying given the fact that I’ve told him that this came from a doctor who treated me with IV Saline at Piedmont hospital; not from me.

It is a fact that I knew nothing about Saline as a treatment modality for Dysautonomia before the doctor ar Piedmont did a blinded experiment (unknown to me at the time) by putting me on Saline infusion, then taking me off for 24 hours or so to see what happened symptom-wise.

The doctor who tried this did not explain any of this until after he trialed this method on me. This prevents any bias I could have had and thus rules out placebo effectThe fact that I responded positively when treatment was given and negatively when it was withdrawn indicates that reduced blood volume is a factor in my Dysautonomia.

Dr. H glossed over this in his charting, disregarding what I’d told him. He made no attempt and showed no interest in verifying what I had told him, merely assuming it wasn’t true. Why? The answer to that lies in an area of his mind only Dr. H can answer, but one thing is clear; that the subtext in his charting conveys that he does not believe me.

How does this serve the patient? Answer: it doesn’t. It only serves to undermine the patient. He went on to state in the record that I was “suspicious” and “defensive at having my opinion challenged.” Hmmm. Sounds like projection.

During our last appointment he got very huffy and puffy that I wouldn’t just accept as fact his theory that my problem was psychiatric in nature and wanted to end the appointment because I wasn’t buying it. He said ” Do you really think Neurlogy is helping you?” Then was very offended when I told him I wanted to give Dr. V a chance, and his statement was “OK, I’ll take a back seat to Neurology” as he rolled his eyes and heaved a huge sigh with matching dramatic shoulders shrugged up, then down.

His charting reflects that he was agreeing to that course of action, yet he contradicts that with a lengthy monologue which tries a bit too hard to invalidate my seeking expert assessment out of state (which Neurology supports my obtaining).

He says that going for these assessments is “premature” yet he suggests I go to a psychiatrist” (which should be the last resort after everything else is ruled out, and it hasn’t been). There are alot more tests that have not yet been performed before throwing me in that dustbin. For all his talk about lack of “proof” and “evidence” he has not one shred of proof that this condition is in any way psychological. Besides, psychiatrists are generally in the business of prescribing medication (indicating a physiological cause for which medication is assumed to have a beneficial effect on a patient).

Field of Medicine

So which is it, Dr. H? Let’s stick to the facts.Let’s be accurate and precise rather than subjective and vague.

1) I have dysregulated blood pressure,

2) chronic constipation,

3) near syncopal episodes,

4) Muscle weakness and spasticity, and severe fatigue

5) Etreme thirst and need ice water by the bed at all times

6) GI upset; nausea, lower GI spasticity, inability to eat solid food for weeks at a time

7) I’ve been hospitalized and treated for such problems, and said treatment improved the symptoms without my knowledge of Dysautonomia at the time (I did not read up on it until after it worked).

8) Dysregulated sleep/wake cycle (evidenced by 3 sleep studies that he ordered and interpreted)

9) I have Central Apnea and Biot’s Respiration; both indicative of a “central process”. Patients don’t develop these for no reason. Idiopathic does not equal psychological or psychiatric. It just means the cause has not been found yet and it requires further investigation.

Solving the puzzle

Relevance

All the wild speculation about my condition possibly being in my head is a distraction from the task at hand and has derailed any unbiased investigation. Dr. H went way off-course with only the lack of an explanation for all my symptoms as his reasoning for wanting to send me to a psychiatrist. I don’t see how this is at all relevant, and seeing as he figured I wouldn’t see what he’d written, the intent could only be as a coded alert to other doctors who might be looking at my records to view me as less than credible. None of my sleep problems were addressed in that last appointment with him although I’d told him that the sleep attacks had returned. He was only interested in invalidating me along with all my symptoms and even my established diagnoses, as though in one fell swoop he’d completely come to revile my very core essence and viewed me as suddenly unworthy of even the most basic dignity afforded to patients because they are human beings who deserve compassion and empathy.

Grass Roots Political Organizing

It was this “othering” that is unmistakably present in the room, that visceral feeling that makes the hair on the back of your neck stand up when you encounter it.

Written To Benefit The Patient

Charting on a patient must be written with the intent to do something useful for the patient.

What do you intend to accomplish?

What is your game plan?  

How are you going to go about helping the patient? 

These interventions should be developed in partnership with the patient, as the patient is the one who must be happy or at least content with their healthcare outcome since the patient is the one who must live inside their own body.

Stress and Strain

You, the doctor can go home and forget about the patients’ pain, fatigue, GI symptoms, movement symptoms, syncope, or other medical problems. The patient, however does not have that luxury.

Dr. H. stated in my record that he was going to go along with Neurology, but Neurology (Dr. V. to be specific) had changed course and was now on my side and no longer doubting that I have Dysautonomia. Dr. V had a very succinct plan which partnered with me to obtain the full assessment for my Dysautonomia, laid out in bullet points.

She did put the Aspergers assessment on my chart as a goal (which although I asked her at the time to keep this off the record she did not), but be that as it may, this was neuropsych; not psych as Dr. H was so blithely wanting to push.

Do the pieces fit

Did he read her notes? I wonder. Perhaps he assumed that she would go in the direction he was heading and when she didn’t he lashed out using his charting as a weapon to defend his wounded ego.

Since I believe they can edit records later I have no way of knowing when Dr. H entered the voluminous material pushing the psych agenda. It may have been soon after I left his office or it may have been later once he’d seen that Dr. V. was not thinking that my problem was in my head.

Dr. V. commented on June 3rd at my last appointment that she had noticed my blood pressure had been running low. Although she did not know the underlying cause of the Dysautonomia she did not dispute it in any way, and was welcoming my going to these consults out of town, admitting that Emory does not have the facilities nor expertise to do full autonomic testing here.

Unlike Dr. H., her notes this time were constructive, laying out a plan that I was in agreement with, a list of numbered goals, (and sticking to the overall goal which was to find the underlying cause of my Dysautonomia and ultimately treating it). That is more like it.

Perfect

To this day I believe that Dr. V. in her heart is sorry for how she misjudged me on our first meeting and truly wanted to make up for the scathing rush-to-judgement that is forever branded on my medical record.

I don’t know why she did not edit it when she returned from maternity leave, but maybe the reason was to show that sometimes doctors can be wrong and that they can also admit that they were wrong and can change later. It takes a bigger man or woman to admit when you made a bad judgment call and correct it than to stick to your story even once you realize your first impression was incorrect.

It did hurt to know that what she’d written the first time was the straw that broke the camel’s back and resulted in both my GP and Pulmonologist’s diverging from me and the impetus for the dissolution of those doctor/patient relationships, but she is not solely responsible. They have a part in it too, and it’s disturbing that either of them would so quickly dash my credibility on the rocks because of some other doctor’s opinion who had just met me. Those two had known me as a credible person; one for about 1 year, and the other for 13 years.

They should have known not to be swayed from my side based on some opinion espoused by a doctor that had no chance to know me as they had and had only a limited snapshot of the circumstances under which I came to the clinic.

In the final analysis Emory’s Administration didn’t allow things to work themselves out and to set the record straight once more data could be obtained. They were too invested in making sure it never would be worked out, too invested in keeping the record toxic and defamatory so that I could not obtain care in or out of Emory.

In their fervor to interfere between doctor and patient we may never know if all this might have ultimately been put in the past and whether the relationships that still existed would have become stronger once  more facts were elicidated upon further testing.

Perhaps this could have been a model, a learning experience for other doctors to see how things can evolve over time and how things can be put back together after such a fire-storm of controversy sets the record on fire.

Burning Up

Maybe behind the scenes Administration thought such a mess had been made by their various employees that it was irreparable, but the most  unfortunate thing of all was that by the time they started blocking people from working with me things had died down considerably, those who had openly turned against me were gone, and when Dr. V. returned it looked as though things might have a happy ending afterall.

Androgynous Black Woman

Just as my care made a constructive turn, I encountered a brick wall; the corporation added insult to injury, swooped in, and never allowed the answers to play out.

Running into a wall

Instead of becoming a teachable moment for other physicians watching it this case became a prime example of how not to do conflict resolution when you discover that agents of your company have engaged in unethical charting on a patient.

Misunderstood and Misconstrued; That is the Real Crime

Woman Upset on Phone

Aspergers and other forms of Autism were once thought to disappear once a child reached adulthood, but now experts are discovering that’s not so. Many people reaching the age of majority who were diagnosed as children who may have had services while growing up and an increasing number of undiagnosed Autistics have now “aged out” of the social service system and find themselves at a loss as to how to fully function in society.

Quiet shy woman

While Autism exists on a spectrum with each individual presenting differently in both strengths and defecits, there are certain traits that people with this condition generally have in common;

* Difficulty in reading social cues from others in their environment.

* Difficulty in communicating their thoughts, feelings, and intentions to others in a form others can understand.

* Trouble in processing and making sense of the world around them.

Doing the math

* To some degree feeling uncomfortable making eye contact.

Woman Not Wanting Eye Contact

* May have sensory issues, and some don’t like being touched, certain tastes, textures, sounds, and/or smells.

Girl Putting The Puzzle Together

* Literal thinking and impairment in one’s ability to decipher sarcasm, lying, disingenuousness, deception, trickery, two-faced behavior, and in some instances out-and-out meanness.

Pensive girl

* Tend to take people at face value.

Hopes and Dreams

* A strong moral sense of honesty, right and wrong, and justice.

Anger

* May come across as odd or accentric.

Accentric Older Woman Cooking

* May have trouble regulating emotions (either appears emotionless as in showing lack of affect in voice or facial expression, and/or the opposite may present itself in that the person may get very upset at times).

Emotional pain

* May have inflexibility in changing one’s routine.

*May have very specific and sometimes narrow interests that are focused on very intently, and difficulty “switching gears” to transition from doing those activities to doing other activities.

Woman Photographer

* May speak long-windedly and circuitously especially about those topics that interest him/her, often unaware of when others lose interest.

* Difficulty conceptualizing opinions widely divergent from their own (once believed to be a lack of empathy, but now recognized as difficulty with a particular type of abstract thinking).

*Repetitive behaviors; known as “stimming”(some of which have the function of self-soothing).

*Co-morbid conditions can include ADD/ADHD, Anxiety and/or Depression (usually situational), sometimes Obsessive-Compulsive Disorder, and more recently a variety of medical conditions are recognized as being associated with Autism such as GI conditions, Dysautonomia, allergies, Multiple Chemical Sensitivity, Mast Cell Activation Disorder, Ehler’s Danlos Syndrome, and other Autoimmune Diseases.

*Often these individuals are vulnerable to bullying by not-so-nice people who pick up on the fact that something is different about them and take advantage of their “blind spots.” This does not only happen to children in school settings, but can happen to adults also in the workplace, the community at large, and even in healthcare settings.

Devastation

There are a growing number of cases documented of abuse and/or neglect in ERs and in other hospital settings. Staff often lack the training and patience necessary to accommodate such populations and therefore handle the situation very badly.

Treatment or Healing

(Note that these symptoms in people with Autism often become worse when they are hungry, thirsty, or have medical issues that are not addressed in a timely manner. This is why it is especially important to pay attention to these clues and take them seriously. They are not a sign of mental illness nor of the individulal just being “difficult” nor are they a defect of character, but indicate that something is legitimately wrong that needs addressed ASAP).

Medical doctor in white coat

It was once believed by experts that boys were affected at a 4:1 ratio to girls, though some believe the ratio is actually 16:1, more recent data suggests that the accurate statistic is likely 2:1 (male to female) or may be even more evenly matched between the genders.

Dr. Judith Gould of the Lorna Wing Center and Center for Social and Communication Disorders believes that current statistics about the prevalence of girls with Aspergers are under-representative citing a 2.5:1 ratio.

Tania Marshall did her docturate in Asperger’s in females, has published a number of books on the subject, and is currently practicing in this sub-specialty. She has found that it’s quite common for girls to fly under the radar until at least secondary school when communication and interaction among girls becomes more emotionally-based and a social hierarchy begins to develop. Females are better at concealing it and emulating those behaviors that are socially acceptable (referred to as masking).

Masks

For those adult women on the spectrum who are now in their 40s and 50s virtually no diagnosis of girls existed in the 1960s and 1970s when females of this age were children, so many women are just now obtaining official diagnosis and having to make up for a lifetime of struggle, misunderstanding, and riducule from those who mistake their condition for something else.

Back in those days nobody believed that girls could have Autism, so other euphemisms were used in lieu of official diagnosis when they were taken to neurologists and/or neuropsych tested. (I have miraculously managed to keep a report I had when I was tested at age 5). 

This is in effect what happened to me. Neurologists have been telling me for years between the lines with statements such as “Your brain is wired differently” and “Your brain’s not hooked up quite right” and when I asked what I could do about it they were at a complete loss as to what to tell me.

In those days there really were no effective interventions or coping mechanisms. With all the stigma attatched and ignorant people out there confusing Autism with mental retardation, I really didn’t want to “go there” having been given the message that this was a family secret that shouldn’t be explored any further and was better left alone. I pushed it to the back of my mind telling myself it must not be true because all the media images of Autistic people were of children wildly out of control and non-verbal 24/7, 365 days of the year. That was not what I was like, but I had some of those problems at one time or another under certain circumstances and alot of the other quirks I had and still have I didn’t know were actually indicative of it.

When things went South at school due to my inability to focus my parents just switched me to a different school to avoid the inevitable questions that would ensue.

Throughout my educational years I was luckier than most in that I didn’t run into much bullying except for at a new private school in 5th and 6th grade in which the girls were especially snooty.

Trapped

Then in high school I just tried to remain as invisible as I could and other than appearing a bit shy, nerdy, and separate, nobody really suspected nor bothered me.

Sporty Academic Woman

I really thought this was something I would take to my grave as I figured things couldn’t get any worse with my just going on with my life and I was used to coping the best I could. It worked fairly well for awhile and I managed to “pass” except for a period mostly in my late teens and 20s when it was mistaken for other problems for which neither therapy nor medication did much good.

Been there, done that, so thanks but no thanks in case anybody’s thinking of suggesting that, LOL. Good old Dr. H. was and he couldn’t have been more off-target. I received some highly disorganized medical records in the mail at the end of last week which included doctor’s notes.

He and Dr. V’s Nurse Practitioner both floored me with their outlandish interpretation of what was going on with me medically; cynical verbiage that I won’t even dignify here because it is so judgmental and unkind that it’s unbefitting anyone who calls themselves a”medical professional.”

Crucified

Dr. V’s first entry was pretty bad too, but she seemed as best as I can tell to reverse her opinion once more data became available about my Dysautonomia and I had a chance to disclose to her about the AS. (She did officially diagnose my Dysautonomia after our last visit on June 3rd, by the way, so that’s progress).

I’m pretty sure she’d just automatically gone into the first visit with a bias from what The Dark Man had charted. Even though she’d changed her mind later, it really scares me how easily influenced these doctors are to think the worst of a patient.

It appears that Dr. T steered clear of the pile-on and kept her notes constructive; good woman! ♥

Thumbs Up

These other people were in actuality seeing symptoms of my Aspergers and charting tidbits about my little quirks here and there and interpreting and/or knowingly misconstruing those traits as something almost willful on my part, poking and prodding at it as one would bat at a pinata!

Jester

Now I know why they were treating me like some sort of criminal or dangerous individual to be feared and loathed.

Misconstrued as not human

Such is prejudice in its ugliest of forms. And now it all makes sense why the spin they put on it is so ego-dystonic to me, because not only were they proposing something I don’t have in me, but it’s the very antithesis of who I am.

Dirty Rat Creeping In The Dark

It is they who are dishonest and have duped me into believing they were actually trying to help me, smiling and pretending to like me and creating this ruse of positive relationship that I was unable to see through because of my Aspergers!

Corporate hiding behind

I find myself now unable to trust another doctor and I don’t know if I will ever be able to, at least not for a long time, because how can I trust when people are being genuine when they can so easily lie to me with a straight face? How can I know that they won’t write these terrible things again that are so untrue and unfair about me?

Girl Covering Face

When I became really ill with the most recent illnesses, the protracted suffering and stress due to the institutional bullying, slow-down, and stoppage of care that I was subjected to over the past year (especially the past 7 months) caused my AS to become much more obvious.

Crying - close up

I am now at a stage in which I don’t think I can put the Genie back in the bottle. Now there is one more problem that I need to do something about and find services for soon. Try finding services for a 55 year old adult woman in Georgia on Medicare. It’s not easy, and in fact nearly impossible.

Elder Woman Holding Face in Hand

Because of what’s happened at Emory it is no longer stable and manageable and I’m pretty sure this destabilization is permanent. People have no idea what I’m dealing with at home.

You Don't Know

Now that I’ve decided to come out publicly I am trying to embrace it as best I can and use the positive aspects of it with which to cope. Although I didn’t want to open up this can of worms initially I am trying now to make lemonade from these lemons and educate the public so that this won’t happen to others who have to go to the doctor for some medical problem and risk falling victim to such atrocity. Maybe others can learn from my process and together we can make the world a safer place.

In 2013 A UK study published in the medical journal “Brain” began uncovering the differences between males and females who have Autism, not only in how they present symptom-wise, but in terms of brain structure.

The Cambridge research published in this esteemed neurological journal used MRI (Magnetic Resonance Imaging) to compare males with and without Autism, and females with and without Autism.

Light-bulb Moment

What they discovered is that overall, males had greater tissue volume, but that females’ brains with Autism more closely approximated the male brain than did Neurotypical females (those without Autism).

However, males with and without Autism did not show structural differences from one another.

Sadness and Shyness

A growing number of experts feel that testing remains behind the times, having been devised to detect Autism in males and that this may account for the under-diagnosis of females on the spectrum.

Many females present with symptoms often mistaken for mental health conditions such as eating disorders, drug abuse, etc…

Women with this brain orientation come from all walks of life. Some are unemployed,

Woman Looking Away

some are professionals,

Health Professional Woman

some are single,

Stay Weird T-shirt

and others are married and/or with children.

Mother with child

They come with all different combinations of skills and challenges. Some look obvious and others, you’d never know unless they told you.

Despite the fact that adult services remain hard to access, there is hope in that more research is being done with adults, and more is being learned about how to cope with it in addition to a growing advocacy movement by and for people with Autism. I will leave you with this beautiful music video by a fellow Aspie woman. Her voice is absolutely lovely. Please share and raise her up.

More Delays on Out-of-town Specialist Appointments

Ain't It The Pits - Photo for WordPress Blog DSC_0023

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 has to! I don’t think I can wait another 3,6, or 12 months to reschedule and arrange this over again.

Last week some nice person in one of my chronic illness groups sent me the link to another woman (this one in Colorado who had received a letter very similar to the one I received from the Chief Medical Officer. This patient is a civil rights attorney.

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.

Cease and Desist Letter Sent To Emory Healthcare

Blue Medical Scales of Justice

I found out that mercifully Dr. V had written the order for the IV Saline and faxed it over to my new primary care physician (outside of Emory), but apparently the new PCP needed her to do a physical examination. We’d had so much piled up from Dr. V’s 3 months away that there wouldn’t have been time for that even if we’d known it were needed, but I had no idea. It wasn’t until a nurse responded to me on the Patient Portal that I knew there was any hold-up.

On Thursday, June 16th I attempted to set up my next follow-up appointment, and was thwarted from doing so because of the block Emory’s Chief Medical Officer had placed on my account. Yesterday (Friday) I tried again after leaving a verbal message of Patient Relations’ voicemail that Emory was violating Federal Civil Rights Non-descrimination laws, and that they need to remove the block on my account immediately. I received no response Thursday, nor Friday, and on Friday when I again attempted to schedule an appointment with Dr. V for sometime in the last two weeks of June or for once I’d have returned home from Cleveland Clinic and UF from the two specialists in mid to late July, I found that the block was still in place. Today I decided to submit a cease and desist letter via Emory Healthcare’s Patient Relations Department on Emory’s website. Here it is below; 

Letter to Patient Relations Sent Saturday, June 18th Via Emory’s Web-form

 I called Patient Relations and got only a voicemail at your phone number (I believe it was on June 16th around noon) at (404) 778-3539. I left a message regarding the fact that Administration, (specifically P. Z. C., MD) has issued a block on my ability to schedule future appointments with any of my doctors at Emory. A licensed physician who does such a thing, superseding and thwarting care by a patients’ own physicians is violating the Hippocratic Oath by maliciously standing in the way and creating barriers to access when the patient is in need of medical care.

 Because of her actions I was denied care for a severe urinary tract infection at Emory Gynecology when I attempted to set up an appointment with my established doctor there. A nurse by the name of M. (at Emory St. Joseph’s Clinic which had the earliest available Gynecology clinic appointment) called me back to inform me I had been “dismissed from the clinic” and rudely talked over me, stating I’d have to go someplace else. When I informed her that refusing care by a non-profit organization is a violation of federal law she yelled into the phone that I’d have to go somewhere else, and then hung up on me.

 I believe this is the same M. that is a nurse of my former primary care physician at Emory St. Joseph’s Clinic, but in Primary Care. The Clinic I was trying to get an appointment with was Gynecology so I do not know why a nurse from Primary Care was calling me.

 Gynecology could not call in the needed antibiotics without seeing me first, so I had to make cold calls to outside physicians on the spur of the moment in order to catch it in time and even then it took all of 14 days to clear it up. I have chronic susceptibility to e-coli infections of the urinary tract. If a mobile physician group had not stepped in to write the prescription for Cipro ASAP I would most likely have had to go to the ER because it was already beginning to affect me systemically. Being an OBGYN herself I am sure Dr. C. is aware of the effect untreated e-coli has on the human body.

 I informed Patient Relations that this is against federal law and that therefore this block must be removed immediately or the corporation risks federal discrimination charges. My call was not returned by the end of business that day nor the next full day (Friday, June 17th). On the 17th I again attempted to schedule my follow-up with my neurologist at the Executive Park location who fully intends to help me and wants to see me on an ongoing basis. She has been away on maternity leave and there was alot that was backed up needing to catch up on when I saw her last on June 3rd and she needs to examine me to start certain services I need. Although I am scheduled to see some out of town sub-specialists I still want and need to keep her as my local neurologist.

 Such decisions should be between me and my doctor and therefore Administration needs to stay the hell out of my confidential relationship with my doctor. I do not know this corporate executive Chief Medical Officer and although she might be a physician she does not have the standing to make medical decisions above the heads of me and the doctors that I choose to enter into a doctor/patient relationship with. This is a malicious and retaliatory act on the part of Administration to prevent me from proving my condition and setting the record straight. Their actions show clear-cut manipulation of my care and an attempt to prevent my obtaining the true diagnosis of my disease-process.

 Retaliation for filing a grievance is an added violation under federal law from which no Emory regulation will provide them immunity. The further they push this agenda the more violations they’ll accrue.

 I don’t know if certain petty individuals consider this their idea of fun or what, but it is a very dangerous game they’re playing, I do not find it amusing and I intend to defend my civil rights to the fullest extent of the law, as a patient with several already established serious autoimmune diseases, I consider their acts of obstruction, patient-dumping, and medical neglect as a corporation a threat upon my life.

 In addition to having the ban lifted, I would like to know exactly who initiated it, why, and how this top executive was brought in.

 This harassment of me has gone on since December when I was abused in the Emergency room and reported it, and it is very clear now that the corporation is attempting to dispense with me as a way to further cover it up.

 Obviously, the corporation is corrupt all the way to the top brass and uses strong-arm tactics to silence those who speak honestly about incidents such as what happened to me (and it is a matter of public record that they’ve resorted to dirty tricks against their own former employees whom have had the courage to stand up and become whistleblowers to report corporate corruption when they saw it at Emory).

 When sending a man to scare and beat me into submission didn’t shut me up, they decided to resort to kicking me out.

 Clearly they underestimate a woman fighting for her life. Given my advocacy background it would be in their best interest for them to cease and desist any further interference with my medical testing and treatment, get out of the way and allow me to pursue my medical care in peace with those doctors with whom I have a good rapport; with those whom genuinely want to help me, whose motives are pure and are in the field of medicine for compassionate reasons.

 I do not bother anybody who doesn’t attack me first, and I am only interested in justice, maintaining my freedom to choose my medical relationships, to obtain my care in a timely, respectful, and compassionate manner, to be allowed to give honest feedback without fear of reprisal, and to be afforded my civil rights to healthcare without interference and impedance, my care plan determined jointly between me and the doctors of my choosing without any sort of conflict-of-interest, pressure or duress from “above”.

 There is absolutely nothing unreasonable about that “expectation” and nothing that justifies my being blocked from scheduling appointments at Emory Healthcare nor anyplace else.

 I am writing you on Saturday, June 18th and I look forward to hearing from you on Monday, June 20th that the block has been lifted and that I can resume scheduling appointments with doctors I wish to continue working with.

Pippit Carlington

***********************************************************************

The letter was submitted at 6: 55 PM, Saturday, June 18th, 2016. I hope this will get through to them that I am serious and that they need to stop these vicious and irresponsible games. What I’ve been subjected to over the past 7 months is institutional bullying and I don’t take that sort of cruelty lying down. If this corporation intends to kill me either actively or passively it will continue to be documented in as close to real time as possible and sooner or later they will be caught and the full weight of the law will come down on them.

Just as Administration is watching this blog, so are others whose job it is to protect patients like me, and I’m sure that I’m not the only patient this type of thing has happened to at Emory. It may be that I’m the first patient to make it public, but a good background search will reveal that Emory has a long and sordid pattern of vicious and underhanded attacks against dissenters, and of discriminatory practices (mostly on the University side), but there have been documented incidents of corruption starting with antisemitism, and others ranging from research study manipulation and NIH funding fraud to Medicare/Medicaid billing fraud some of which included double-dipping; billing Medicare and Medicaid for services which had already been paid for with research funding.

In each of these cases the entity sought to discredit the whistleblower who had exposed the particular malfeasance by exploiting whatever vulnerability in that individual they could, be it their work reputation, going after their medical license with lies about them, assassinating the person’s character, and/or painting them as mentally ill.

Dr.Charles Nemeroff, a psychopharmacologist and former head of Emory’s Dept. of Psychiatry who is mentioned in numerous reliable media source’s articles and investigative reports as having committed research and medical journal publishing fraud and that he was in bed with major pharmaceutical companies and getting promotional funding from them while employed by (and with the blessing of) Emory. He also falsified safety claims on Abilify stating it was safe when in fact it was causing Tardive Dyskinesia.

Nemeroff himself conducted some of those psychiatric evaluations on whistleblowers, (proving my point that Emory does have unofficial hatchet-men to do their dirty work for them in order to cover up their corrupt practices).

After leaving Emory and Georgia in disgrace, Dr. Nemeroff went on to become employed at University of Miami and officials there seemed strangely unconcerned about hiring somebody who had committed illegal and unethical acts in the process of his career activities.

Apparently the reason for this nonchalance according to the Chronical for Higher Learning was that NIMH Director Thomas Insel owed Nemeroff for a favor he’d done for him when he’d lost his position and put in a word for him with Pascal Goldschmidt, MD, UM’s Medical School Dean, convincing him that the benefits in the man’s skill at fundraising outweighed the risk he carried. Meanwhile Insel quietly revised the NIMH conflict-of-interest regulations, and Nemeroff sits on two advisory boards that decide or influence which scientists get research funding.

Nemeroff’s current department is back in the Medicaid business overseeing a multi-million dollar contract which oversees 900 providers 30 hospitals, and 100 CMHCs (Community Mental Health Centers) trusting him with state funding again even after his HHS/CMS violations here in Georgia. While Nemeroff sits on easy street the whistleblower has spent years of his life fending off numerous frivolous legal challenges thrown at him by a judge who was in Emory’s pocket, unfairly placing a gag order on him while not evenly applying the same constraints on Emory whose various officials have given a number of media interviews about theirs and Nemeroff’s side of the story.

Emory holds a tremendous amount of power in Atlanta and throughout the state of Georgia so it’s no wonder that its top-level executives feel they’re above the law. It’s bad enough that they feel free to tamper with research and NIH/NIMH funding and go after people to cover up the skeletons in their closet, but the epitome of low-down and dirty that they’d resort to such tactics against patients! To attack a patient may prove to be their undoing. That is a bridge too far. Here’s one porcupine they’d best leave alone. I’m sure this is just the tip of the iceberg.

 

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.

 

The Politics of Hate and Social Dawinism

Padlocked

Maybe at some time in our evolution the Darwinian principle “survival of the fittest” made sense for the continuation of a strong gene pool, but as human beings in modern society we should be more evloved than that, yet it continues to permeate our culture, or work, our healthcare, and even our relationships and when we as humans no longer meet the criteria of viability we are discarded like yesterday’s garbage.

For those of us with severe chronic disease this baser nature in those around us can prove fatal, be it a spouse, a friend, a relative, even a doctor who has been charged with treating us for these conditions for a long time.

I found out yesterday that at some point my GP decided he didn’t like me, and I guess that makes my life worthless and my not being liked is punishable by death. The “pink slip” was coming. It was just a matter of time, I sensed, but nevertheless it hurt to know that he was just barely tolerating me for God knows what length of time.

Apparently the straw that really broke the camel’s back was the “tone” of my message, but I had reached the limit of my patience after so much mistreatment that I was one raw nerve, and after 3 months of being left to suffer I was like a tormented animal in a trap. It wouldn’t have mattered what I’d said, he didn’t want me as a patient and was just looking for the nearest trash can to throw me into.

Because he didn’t like me he was impervious to my pain, my near fainting spells, my unquenchable thirst, my need for home healthcare, and the worst thing of all is now I know without a doubt exactly why he didn’t like me. It in truth was not what I said, or really anything I’d done, but most of all my very failure to thrive and the secret I continue to keep to myself which is part of the reason why. I almost told him, but after the last appointment when it became clear he was being mean to me I knew that secret would only be used against me, so I thought better of it.

The evaluation for that unspoken thing is stalled, like most of the other independent evals; there’s a long wait. In this instance it’s Medicare holding it up; some arbitrary limit on the number of providers in the state of Georgia. It could be 6 months before I can fully make it official and safely disclose it to any of my doctors.

It is this very condition that Emory is really discriminating against that which makes so many others a target of bullying and abuse. This thing has no curb appeal when you’re no longer a cute 5-year old. Even so, one can only do what one can with the tools available and I have lacked all the supports and resources I’ve needed all my life in order to cope with all my disabilities much less this doozie, and I know in my heart I’ve done the best I could given the fact that I’ve had to do it alone. That is all anyone can really expect, but they don’t care. They expect more anyway. It is only when I’m backed into a corner that I become the hellcat only after having been way too patient and way more tolerant than anyone should have to. Why is it only me who should be tolerant?

He says he’ll be available only for emergencies, isn’t that a laugh. What good could he be as he has no admitting privileges and besides what’s been happening has been a slow emergency that festers and worsens with each passing day. It is in the emergencies that I’m most vulnerable and why would I trust myself in such a condition to someone who despises and in his heart wants to hurt me? Perhaps they (those in the ER) are lying in wait for me to hit the floor so that they can finish me off. I will not give them the satisfaction.

I wanted him to understand me but he didn’t want to. He’d already made up his mind and nothing I could say would ever change it. It was as though every atom and every cell within me was rotten in his eyes and there was nothing in it worth saving. With a double-bind like that it leaves you no hope.

He said that he was highly offended by my saying he wasn’t honest, but the truth is he wasn’t. On a very core level he didn’t like me but he pretended he did and he led me on to believe he would act in my best interest, but he didn’t. What is that other than dishonest? His actions gave him away. If you care about somebody you don’t just stand there and allow them to suffer.

Besides, it’s in the Hippocratic Oath; First Do No Harm. Doctors seem to think that there’s a loophole, that they can get away with it as long as it’s passive-aggressive, but the truth is that medical neglect is doing a patient harm! He’d have handled it better just to put me out of my misery than to subject me to this Chinese water torture of a death by a thousand cuts.

On yet another level, maybe it was too easy for him not to like me as a convenient excuse for poor judgment the cause of which was something even more disturbing. I have my suspicions because this is not the man I knew for the larger part of nearly 13 years. It seemed almost as though his soul had been taken over by someone else. The last sentence I wrote to him was that he must be going through something and that I hoped he got healing for whatever it is going on in his life that would cause him to do what he did.

Hopefully those whose job it is to hold him accountable will do that and not let him just pretend nothing’s wrong, as I do not believe this only affects me, but other patients now and in the future (if his superiors fail to insist he take care of his problem).

There are times when I truly wish I wouldn’t wake up the next morning. I’ve been able to sleep less and less the past few days, and last night I only slept in catnaps because the last thing I ate didn’t digest. I can feel it still sitting in my stomach, yet it has upset my whole GI tract from top to bottom. Also, I’ve been overheating almost continuously now with just short periods of normal temperature sensation and cold spells in-between. I feel like I am truly in hell. My autonomic nervous system has turned on me and I can’t make it stop. I need that saline ASAP!

As for the referrals to Vanderbilt and Undiagnosed Disease Network the only thing I can do now is to ask General Neurology to do them and hope some random person filling in for Dr. V will do it. Also, they need to get a message to her as to what’s happened. She won’t be back until May, but I think she sees through the bullshit going around and really might actually care (based on what the Nursing Supervisor said on the phone) and my being able to read people on multiple levels. Despite her being a bull in a china shop I could decipher something else; something underneath. It took awhile to fully process but nonetheless it was there and I knew she had no ill intent. That energy was very different from The Dark Man. My first reaction was not to like her because she forced herself onto me, but I read that it was not malicious like he had been, and that something underneath was good.

Maybe in her mind she was thinking she wanted to get it over with now because she knew she wouldn’t be here for several months to do the exam if she’d waited. It’s too bad that she didn’t get to read the films from Piedmont or the Gallium Scan herself. She sounded as though maybe she was better than some others at looking for Sarcoid lesions. If they are there and someone else misses them, then what will happen? Will they want to take the extra time and effort to be sure?

I was glad that Dr. B. didn’t try to touch me when I saw him the last time. I could read enough just in his body language and tone of voice to know he was not on my side. To read it in his touch would have been like being clubbed over the head with it.

On Monday when I go into General Neurology I may be a mess but at this point I don’t care. Maybe they need to see how it really is for me after I’ve been targeted so callously and viciously by the system that grinds people up and spits them out in the name of healthcare, how I’ve been left a mere shadow of my former self. In some distant corner of my being I remain strong even now. I’m trying to hang on to the shred of dignity that still remains.

People who haven’t experienced this cannot imagine what it’s like to be branded with such libel in their medical record and then told it will sit there for eternity assumed to be accurate even though it’s all lies because of “policy”. Imagine someone took a piece of shit and put it in your clothing and you had to wear it going around stinking for the rest of your life. It wasn’t a part of you yet anywhere you went people would assume it was.

And then to be sick on top of it and not treated feels like I’m being punished for something I didn’t even do wrong. All I did was ask for what I needed. All I did was stand up for myself.

All I can do with this awful feeling is sit here and lick my wounds at home at the moment. It is the weekend, and on top of that I really trust no one right now.

I’m still talking but I fear that might end soon. When it happens I can’t will my brain to do it. Sometimes it just happens for a few minutes when the stimulus is short-term, but when the stimulus is longer-term I have been known to go for days and even weeks.

On the practical side I have gathered the names of some attorneys who are in the right specialties to right the wrong and have emailed one of them. I hope someone will help soon. That stuff cannot stay there if I am to have a chance for the treatment I need.

 

 

Call To Action: Wronged at Emory? Contact Me

Pen on white paper - Call to Action DSC_0001.JPG

If you have been discriminated against in your healthcare at Emory I would be very interested to hear your story, especially if you have had a bad experience in the ER there.

There is a particular practice referred to as “gaslighting” or “psych-shaming”; in effect calling you crazy and undermining your credibility which is particularly damaging to one’s reputation and it can have the effect of slowing down or stopping your testing and/or treatment for your very real medical condition! When this is entered in your chart (even if it is not an official diagnosis but implied) it can cast a shadow of doubt like a black cloud above your head anytime a doctor in or out of that system requests your records.

To those of you just tuning into this blog I’ll recap briefly; this happened to me at Emory’s main Campus’s ER on Clifton Rd. on December 3, 2015.

I was medically neglected for most of 9 hours while in the ER, then abused physically and psychologically by an on-call neurologist, Dr. P. R. M., and then defamatory verbiage was charted implying that I had some sort of mental illness and/or was “feigning” my condition. His resident a few minutes after leaving the room came back and plopped her butt down on my weaker left foot. (See my archived post The Dark Man to read the whole story).

This atrocity was a malicious form of organized bullying and exploitation and I strongly believe violates Federal anti-discrimination laws; Federal Hate Crime statutes, The Americans with Disabilities Act, and The Protection & Advocacy Act of 1986.

Just yesterday the “patient advocate” T. J.” who actually is internal (employed and paid by Emory) made a harassing call to my home in an attempt to shut me up. She informed me repeatedly that “no one will be calling you back” and implied during the call that she has been tampering and interfering with my right to seek redress from her superiors and others within administration to get the complaint properly resolved.

This too is a violation of Federal law. Retaliation and intimidation against a patient for filing a complaint is strictly prohibited and is an added violation. If she were a true advocate she would know that.

I was instrumental in writing the 5-organization contract in Georgia when the P&A Act was first passed and have had extensive training in both individual and systems advocacy, have worked alongside attorneys, and used to be paid to investigate abuse and neglect complaints from patients in a whole range of facilities.

My agency Alternative/Atlanta; Center for Patient Advocacy covered the metro-Atlanta area. Due to funding cuts the original contract was taken over entirely by the organization whose job it was to manage the funding and disburse it to the 5 organizations.

Advocacy is not like it used to be anymore, and sadly patients have suffered because the demand far exceeds the supply of good advocates. This was my line of work before I became too ill to do it fulltime and before Georgia lost most of its funding.

When I did this officially I advocated for my clients as though they were family. I worked late to make sure they got what they needed, was on call nights and weekends, and it was not uncommon to see me show up at a hospital to meet a patient who had been placed in restraints or who had been physically, emotionally, or even sometimes sexually abused by staff.

I understood that in order to properly advocate for a patient one has to look deeper than “he said, she said” and deciding whom to believe. There was never any question as to whose side I was on; the patients’! There were no divided loyalties or conflicts-of-interest and I pursued the course of action and outcome the patient wanted.

I also participated in annual reviews of all advocates nationwide by an independent evaluating agency, and my charting was deemed best in the country of all advocates employed by this Federal Protection and Advocacy system.

I had hoped to one day make a good living at it, as it has always been my passion to help those who need someone to stand up for them to level the playing field. I have a saying;

Old Advocates Never Die;

They Just Lose Their Funding!

Since my funding was cut I have continued to advocate wherever I saw a need, lending my skills on a volunteer basis to a variety of worthy causes. I believe I have been called to do this and that my life experience is in a sense a test-case which has led me to understand many different populations and their needs.

There is nothing more devastating than fighting for ones’ rights alone, but every cause worth fighting for has its true allies. One just needs to find where they are. I believe that very rarely is anything just an “isolated incident”. Most incidents are a microcosm dictated by pattern, and if you look beneath the surface you find what the pattern is and usually the motive as well.

For every complaint you officially get there are likely many more that never reached the official grievance stage for one reason or another. Patients are often too ill or too busy, or they are too upset by what has happened to them to go through all that’s involved in filing an official complaint, compiling the evidence, and following up (sometimes numerous times) to obtain the outcome. If the complaint is denied, then they are required to complete numerous other formal procedures, fill out forms, call and leave messages, and keep documentation of names, dates, places, and other events relevant to their grievance.

This is precisely why good advocates are needed, especially in instances in which the victim/survivor’s credibility is under attack.

All the self-advocacy in the world will not save you if at the very core those you go to for help do not believe you.

When authorities see one patient with a complaint they might not take it as seriously as when there are 5, 10, 50 or 100 such incidents because now we are talking about a pattern of conduct that raises the antennae of state and federal regulators on multiple levels.

Remember that even when things feel hopeless and you feel like the only one, most likely it’s not and you aren’t. There are people floating around, maybe closer than you realize who have been through something very similar. You just need to locate them, come together, and organize to affect social change!

Maybe you have had an experience at Emory in which you have been discriminated against in your healthcare because someone didn’t believe your symptoms were real, you may have been accused of “feigning” or making them up, “exaggerating”, being “dramatic”, being a “hypochondriac”. 

A doctor may have called your condition “functional”, “psychogenic”, “emotional”, “psychological”, “psychiatric”, or “Hysterical Conversion”, “Factitious Disorder”, “Somatoform Disorder” (see my earlier post The Dark Man).

Then you noticed a lack of concern from your treating professionals, their treating you as if you were a minor child and not respecting your boundaries or wishes (see Bull in a China Shop General Neurologist), irritation directed at you, your symptoms ignored or directly disregarded, and ultimately a slowdown or stoppage of care. (For examples of this see my blog post Not Being Believed).

The above terms are buzzwords that are designed with maximum shock value to sabotage a patient’s credibility and an implicit warning to doctors to steer clear.

Let’s just be honest; there is nothing helpful in charting such things about a patient and this can only indicate malicious intent. It is fear-mongering of the highest order and one of the most vindictive acts a doctor can level against a patient because its effects follow the patient long after the doctor is gone. Any seasoned investigator will recognize this immediately and people who work in the ER (if they are honest with you will know the subtext they imply).

If any of this sounds familiar to you please get in touch with me by posting on this blog in the comment box below and I will give you some ways that you can submit a signed statement to me about your experience. If you can also get the statement notarized then that’s even better than just your signature alone.

In my post Educating Doctors of the Future; Affliction as Strength you will read some cogent points arguing against the assertion made by doctors that a patient’s condition is “functional” or “psychogenic”.

I’ve included some links to articles written in peer reviewed medical journals that suggest that patients given this label even when it is given as an official diagnosis do in fact have a real neurological problem.

These citations will help you make your case should you decide to take legal action or even if all you want to do is to get your doctor to stop viewing you and treating you in this stigmatizing way. The post A Few Lateral Moves, but an Ace In The Hole provides you several avenues by which you can file external grievances such as with the Office of Civil Rights and Health And Human Services’ Secretary Silvia Burwell. These are the branches of government most powerful in righting these types of wrongs committed in healthcare settings.

If you are a news reporter and are interested in doing a print of TV story on this or an expose on a longer show, feel free to get in touch with me. I am ready and willing to do interviews and as time goes on there most likely will be others who would speak publicly about their similar experiences.

As Emory has been consistently refusing to take responsibility and to correct this problem I feel it’s imperative now to use all available platforms to exert pressure on the corporation to ensure that they put the best interest of patients first and to stop these unprofessional and corrupt practices. I will be drafting a press release shortly.

–> You can make a statement to The Powers That Be now <—to have legislation drafted that would stop and prevent this from happening to patients on a national level! Several of us organized and have created a petition which will address Institutional Bullying in Healthcare Settings as a unique and enforceable unlawful act treated as particularly heinous because of the extreme power differential between medical professionals and patients and the inherent vulnerability of those of us chronically ill/disabled.

We must rely on doctors to look out for our best interest when we’re ill at a time when we’re at our most vulnerable, and when they don’t they must be held accountable.

It’s only fair, so please sign the petition and add your personal account detailing what abusive/neglectful/reckless, or malicious behavior healthcare professionals and/or healthcare administrators have done to you where it says “Reasons for signing” below the body of the petition on Change.org, and be as precise as possible. Each signature and letter will be auto-forwarded by the site to Secretary Burwell for consideration by her committee and Congress as a whole.

Don’t let these unscrupulous people get away with this type of cruelty any longer! It’s time for the patients to rise up and insist that we be treated as valued customers with the authority to choose what happens to our own bodies, not treated as minor children, the “village idiot”, trouble-makers, nor common criminals for exercising that right!

 

Moved An Inch – Just Maybe Help Is On The Way

Moved An Inch DSC_0001

Today started out like so many others, with a plethora of delays and a whole lot of question marks, but I finally made some headway with transportation so that I could schedule the Modified Barium Swallow test Dr. B. had finally updated. It has taken nearly an Act of Congress to get these few tests and the physical therapy evaluation in place and trips scheduled with transportation, and the wheelchair pressure mapping evaluation set up. I’m not happy that I am going to have to attend all these appointments in a chair that puts all this strain on my muscles. If he’d followed through when I’d asked him to in late November or December I might have already had the evaluation, had filled out the Independent Care Waiver form, sent it in, and the better chair could already by in the works. Knowing that getting these things through Medicare and Medicaid can take up to 6 months, this procrastination on my doctor’s part has only made life harder for me.

I tried calling Daria again and she was in a meeting. All the woman answering the phone could do was take a message and email her. At around 12:30 I still had no answer as to whether Dr. Baird had written the order for home healthcare, yet another day gone by that I was not receiving the help I need. Maybe he had called her today but I had no way to know and she couldn’t tell me, but chances are he still hasn’t given his recent track record.

Finally I received a call from a woman at the agency I’d called yesterday saying that Medicaid had approved me for services for the in-home help. I gave her my history and told her how much trouble I’ve been having getting what I need and that I am really drowning here trying to do all this when my GP now treats me as irrelevant and thus is under-reacting.

In tears I told her that I am a little nervous about trusting new people because of how things have been grossly mismanaged in every possible way this past year, and that I don’t want my dignity taken away by some “best-interesty” social worker and to be forced from my home and placed at the mercy of God-knows-whom, whatever this disease turns out to be. My home is really all I have, where I feel safe with my pets and familiar surroundings, my own bed, and my own type of foods, and that I would just die if people continued as many have been proceeding at Emory in taking away my freedom bit by bit. I see it happening before my eyes and it’s terrifying and it needs to stop. She said she understood.

Viewed from a sociological and humanistic perspective it is entirely understandable but often doctors live in the land of autocracy and it’s the patients who suffer because of their abuse of power. The Lord Giveth, and The Lord Taketh Away. This is really a matter of medical ethics. No doctor has the right to withhold treatment or other services just because he can. I don’t care how stressed or irritated they are, or how much they’re tired of their job. They do not have that exalted a status to wield that kind of power as a weapon. They may get way with it for a period of time, but sooner or later they will have to account.

I told the woman from the agency that I’m still waiting to hear back from Shepherd Center regarding a social worker and that I’d heard the ones they have over there are very good and would be less likely to do that sort of stuff to me. They deal with alot of people with spinal cord injuries, so they are more used to people staying in their homes and having the assistance there.

The next step is a nursing assessment through Medicaid through another agency called Faith Services. The woman on the phone today told me that when the nurse contacts me to tell her every need I have so that I can be given the maximum amount of time per week possible. I hope I can remember and verbalize everything at the time because I communicate better in writing than verbally and invariably leave a few things out when speaking, especially if the person rushes me and doesn’t wait for me to finish everything I need to convey. I will try to make a list and print it out just in case.

After noticing on several print-outs that my diagnosis of Myoclonus was missing I realized that this may also be adding to my credibility problem. Apparently it was charted as my diagnosis by Dr. T. in my record in her notes but in order for Emory to “officially” recognize it it needs to be entered into a particular list of all my diagnoses and it wasn’t. For Godsakes, I’m on Keppra for it (which works quite well), but it is not cured, just less severe and frequent than before! But in true Emory form this clerical oversight among other bungles has been used to the hilt to paint me as if I’m making it up or imagining what’s happening.

I swear to God, this record will be set straight, and my good name restored. I will not go down like this!

Dr. T’s nurse called back and read back to me some goblety gook a clerk had jotted down which said absolutely nothing. I guess she couldn’t spell Myoclonus, so just decided to say “the patient needed something changed in her record and for the nurse to call her”. I had to explain it all over again and the nurse got it right away the way I explained it. So hopefully soon that piece will be set right.

So if any doctors or other medical professionals are reading this; the lesson is think before you chart!

Things that do nothing to help your patient and may even hurt their care should not be charted, and things that should be and are not charted both can cause the patient to be misunderstood and these messages, omissions, even the lack of documentation in a patient’s chart can be and often are misconstrued by other doctors! This can cause a damaging slow-down or stoppage of care and can harm and in some instances even kill the patient because of the late intervention that results.

When I hear people say they’ve gone for 8 years being told their medical problem’s all in their head this is why! It has everything to do with spin and everything to do with bias! Those two things translate into actions (or lack therof). The writers and those who read what’s been written each bear some responsibility in what happens next.

While theoretically the electronic record can speed up diagnosis and treatment and improve continuity of care, there is a huge potential for abuse if not all professionals use it responsibly. As it currently stands, the patient who has been the victim of reckless and even malicious charting has little defense against a gaggle of medical “professionals” who see fit to sideline a given patient. I would be willing to bet this happens at a much higher rate to women than it does to men.

I would really like to see laws changed to require health systems to make all material in the chart visible to the patient, as well as printable, and would allow patients to respond to this material by entering their own entries without a board to decide whether or not they get to do this.

Since when did doctors become custodians of our bodies?

The old adage, “nothing about us without us”  is apropos here.