Why Dysautonomia is Such A Hot Potato Diagnosis

After having spoken with many other patients I’ve noticed a commen theme in that nobody except a handful of experts in the medical community really wants to acknowledge, much less treat patients with some sort of Dysautonomia. I keep wondering … Continue reading

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.

Emory Turns Patient Away At Clinic; The Last Straw

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Butting heads

Just when I thought things couldn’t get any worse…on Thusday, June 30th they did. Transportation came late and my assistant and I were worried we’d get there too late to be seen at Dr. T’s office at Emory Sleep Medicine at  the 12 Executive Park location. The driver was confused and was about to take us to Clifton  Rd. (main campus) but I told him he was heading the wrong way and he turned around just in time stating his GPS was taking him the long way.

There was no time for wrong turns. I was on a mission to bring airline forms to Dr. T. and Dr. V. (whose offices luckily were in the same building) regarding my oxygen concentrator.

I’d printed out forms for both Delta and United figuring those were the most likely two that the GA. Medical Care Foundation might book the trips with. I would need one or the other of the two doctors to sign off on my need to bring my oxygen on board the plane so that I’d run into no problems when it came time to travel.

Document Signing

We got off the van and went to the 4th floor where Dr. T’s office was located. We arrived to find a packed waitingroom. There was a heavy-set black female patient at the front desk carrying out a lengthy transaction to reschedule an appointment. She was wearing a portable oxygen concentrator and the young receptionist behind the counter lingered, typing on her computer. It seemed as though I sat there for 5 minutes. I looked at my watch seeing it was 10:45 already and still not checked in. The last thing I needed was to be considered late on such a crucial day.

The night before I’d sent detailed messages via the Patient Portal to both doctors so that things would would go smoothly and hopefully the forms for the airlines would be signed and handed back to me while I was there, but no such luck.

As my assistant and I waited I saw Dr. T pass through the receptionist area. I waived expectantly to her and she made eye contact with me and smiled her acknowledgement on her way in and out of one of the adjacent rooms. All the while I had no idea what was to come. I thought she’d be coming out to see me shortly, but the next thing I knew a portly, middle-aged white woman with shoulder-length wavy blonde hair called me back.

“Hi” I greeted her. “Are you the nurse?”

The woman stammered a bit and explained that no she wasn’t but that she’d explain. I followed her to a room on the hallway to the left-side of the receptionist desk. As we entered one of the rooms she sat behind a small computer desk and I in my wheelchair, across from her. Not wanting to waste another minute I launched into my request about the airline forms that I needed the doctor to sign. I explained that I was due to travel on July 6th, just a few days away. It was clear from her response that she was fully aware of my Portal message from the night before, but she stopped me in mid-sentence.

“Before you get started, I need to tell you; I’m the Office Manager. Patient Relations has been calling us all morning telling us that you’ve been terminated from the clinic and that we aren’t allowed to see you. I was going to save you the trip over here but it seems you’d already left. Because of the termination I can’t give those forms to Dr. T. She won’t be able to speak with you or fill them out.”

I felt suddenly as though someone had punched me in the gut. I could hardly believe that after all this that Administration was still placing obstacles in my way. It was at this point that the full impact hit me. Tears began pouring from my eyes.

“Look”, I said. “This is what happened. I was abused in the ER in December and instead of doing the right thing and correcting the problem Administration is covering it up.”

“I don’t know the story” she replied.

“Well now you do,” I said looking her dead in the eye. “I am honest as the day is long! They called in a sadistic neurologist to scare me and he beat me with his hammer, then had his female resident come back into the room afterwards and plop her butt down on my foot. Then he put defamatory things in my chart to destroy all my doctor/patient relationships so I could never get help. This was an impaired professional with an anger management problem.

Goofy doctor

Think about it. If I were what they’re painting me as I would be in a mental hospital right now after the past 7 months of harrassment Administration has put me through since the incident. You have no idea the tactics I’ve been subjected to. I must be one hell of a strong woman to withstand all that and still be talking to you rationally as I am now! This is not right! I was the victim, not the perpetrator and now I’m being punished for something they did to me!

Vulnerability

“That’s all the more reason why you should probably get your care outside of here and start somewhere fresh” said the Office Manager.

Tears continued to flow down my cheeks. “This cannot be allowed to happen. This is not the time!”, I pleaded. “I’m actively ill! It’s not like I’m coming in for a routine check-up. I really needed this appointment. I’m so sick that I need to go out of town to these top level specialists to get more advanced testing than I can get here, but nevertheless, I still need my neurologists here locally to come back to afterwards. Dr. T treats me for the Myoclonus. and Dr. V  was fully intending to help me get these evaluations but Administration is sabotaging my trip!

Suitcase-travel

I’m supposed to leave on July 6th! I don’t have time to start over right now with all new doctors. Don’t you understand? I’m sick and need to go soon so they can find out why! I’m waking up multiple times a night choking and gasping for air. My hair is falling out. I’m Dysautonomic and nobody knows why. They can’t do it here in Georgia!” 

Plane in blue sky

“I’m not a clinical person”, said the blonde-haired woman. “I’m just an Office Manager so I don’t know what to tell you in regards to that.”

“Also, I need those sleep study tapes because the specialists need to see my abnormal movements for themselves. The reports don’t go into enough detail although they had some EMG leads on me. The report didn’t document the rate of the jerking, only said that they picked up the movements but that they weren’t PLM. They are some sort of Myoclonus but they don’t know what specifically. They present at the onset of sleep and only under certain other circumstances like when I’m lying on a hard surface or my upper body gets too cold.”

“The reports will be good enough. The problem with providing the tapes is that it requires a certain kind of software to view them that’s not compatible with anybody else’s.” On the face of it that sounded a flimsy excuse at best, and at worst it may have been a lie.

“These out-of-town appointments took months to get” I continued, “and if I have to reschedule it could be up to a year for me to get another appointment…And also…I need to tell you something. I have (condition that can’t be named at this time) which is a neuro disorder; not psych, and therefore I don’t do well with this sort of disruption to my life. What they’re doing is really not good for me.”

The Office Manager seemed to soften for a moment. “I understand, and I empathize, but there’s nothing I can do” she said lamely. “Because we’re not a private practice the doctors here have to go by what they say to do. It’s now in the hands of Patient Relations.”

“Patient Relations is just a mouthpiece for Administration”, I replied. “They aren’t going to do anything. Do you want to know what their idea of an investigation is? They ask the perpetrators what their side of the story is, write it up, and send it to the patient. That is not a fair and unbiased investigation! I used to work as a patient advocate. I was instrumental in designing the Protection & Advocacy system in the state of Georgia. I never did my investigations like that!

I pulled the forms from my white 3-ring binder. “Here. Give these to Dr. T. just in case. Without this I can’t board the plane with my oxygen concentrator.

Corporate

She needs to go to bat for me as my doctor! Have her tell Administration that blocking my care here and sabotaging my trip is putting the patient at risk. Have her advocate for me!” 

The office manager looked at me from across the desk. There was a sense of futility in her body language. I found it increasingly difficult to look at her.

It seemed as though tears came in waves and then in-between got stuck and wouldn’t come out. I felt as though the wind were knocked out of me. I covered my eyes and leaned forward in my wheelchair teetering on my seat. I opened my mouth and no sound would come out.

Somehow it seemed especially cruel knowing that Dr. T. was just a room or two away but could not come in and speak to me. They didn’t even have the decency to let me talk with her one last time.

Even that being the case, all they had to do was have her sign my forms and bring them back to me but The Almighty GD Administration was like a huge fart in the room, rancid and putrid and taking precedence over everything that was rational.

Death

The Office Manager was like a deer in the headlights, a lemming walking automatically over a cliff. Only one thought entered my mind at that moment. No job is worth casting a patient still in need of care out into the street to God-knows-what fate. The finality of it all fell like a thud to the floor.

Smashing an egg

After awhile she followed me out into the waitingroom, still packed with patients. I was still crying. My assistant was not where I’d left her. The Office Manager asked me her name, I told her and she said she’d try to look for her. At first she couldn’t find her but came back and took me back the other way to a waiting area that was less crowded.

“I’m just getting you more upset” she said turning to her right as if to leave.

“No you aren’t. It’s not you, it’s them” (meaning Administration). I reached out my hand and she took it. This was bigger than either of us. She asked if I could wait there for a minute and she’d try again to find my assistant. I nodded. In a few minutes she returned with her. The Office Manager explained to my assistant what she’d said to me about Administration not allowing Dr. T. to see me. I told her to ask Dr. T. to do everything she can to stand up for me.

My assistant turned to her. “So you’re basically saying that she needs to find all new doctors?”

“Yes, pretty much”, said the Office Manager.

“Let’s go call transportation” my assistant said to me, turning away from the woman in disgust. “We can do it from downstairs.”

“I need to give these other airline papers to Dr. V. on the 5th floor first and try to talk with her nurse before we go.” We headed toward the elevators in the main hallway. As we were leaving the Office Manager called out after us “It might be a waste of time for you to go down there because Dr. V. won’t be able to do what you need her to do, but you can try. Good luck with everything.”

The first one to arrive was too full, so we opted to wait for the next. Once on the 5th floor I approached the reception desk and asked to speak with J. Dr. V’s nurse and the receptionist told me she’d call her.

In just a few minutes J. came out and introduced herself. She told me Dr. V. was only here on Fridays. I told her the situation and asked her to ask Dr. V. to advocate for me and advised her to get in touch with the Union rep about this situation because Administration is putting pressure on medical professionals to act against the best interest of patients. She said she would and wrote some notes on a small post-it pad.

I handed her the airline forms and asked her to give them to Dr. V. The nurse said she’d call me. Once we’d gotten home I checked my phone messages and found both the confirmation of that day’s appointment and a later message from A.B. of Patient Relations stating the appointment was cancelled. The following is a sound file of the confirmation and the message from Patient Relations.

 By the time my assistant left at 3:30 PM on Friday no call from the nurse had come in yet to confirm that the form had been completed and faxed over. 

The next call on the tape is from a contact person at Medicaid informing me on June 1st that the GA. Medical Care foundation had still not received my paperwork from my doctor. Late last night I saw a Patient Portal Message. I logged in and it was a goodbye letter from Dr. V.

Corporate had prohibited her and any of my other doctors from seeing me. A message just underneath from the nurse which merely typed the instructions for the GA. Medical Care Foundation process implied that the paperwork had never been filled out or faxed, thwarted by the top brass at Emory Healthcare.

No reason was given to Dr. V for the “release” as Corporate so euphamistically referred to the expulsion (as the real reason; discrimination and retaliation for filing a complaint is against Federal law so they wouldn’t admit to that).

I wrote back to her telling her that I don’t think I can bring myself to start over again with a new neurologist, that I wanted to keep seeing her and that maybe she should contact the Union and tell Emory to take this job and shove it if they wouldn’t budge on this issue.

I left her my number and asked her to call me if/when she goes into practice somewhere else. I said that there is a shortage of good female neurologists in the Atlanta area and especially ones who really care about patients, and that I could tell she does. When you’re ill like I am and have been through what I have, being more than just a number, having a doctor who cares if you live or die and is truly invested in you is especially important.

Until I’d spoken with the nurse the other day I thought she’d worked there fulltime but in fact it’s only half a day on Fridays, so I guess it wouldn’t be any big financial loss if she decided to tell them to stick it up their collective posterior!

I cried most of the night and woke up crying again this morning.

We are not a bunch of chess pieces (patients and doctors) for Administration to move around at will!

Next Move

We are people with real relationships! To destroy those relationships which can even determine life and death for a patient is to do harm!

Logistically I don’t know what will happen to me now or who will fill out the forms necessary so that I can get the care I need.

Blood pressure

What the suits in the ivory tower fail to understand is that in order to do those kinds of things a relationship, a connection must be there and the doctor has to care about you. You can’t just find that in any doctor, and if a patient finds a good one it’s best to keep them.

I looked out there plenty before I saw Dr. V and after the first appointment (knowing Emory had her by the short-hairs) and I didn’t find it. Then as I got to know her I realised she was it. She would have done all that…if Administration hadn’t in effect held a gun to her head not to.

If you are a patient who has been mistreated at Emory please see this post; and contact me privately to give me your written signed statement. It’s never too late to make your voice heard.

 

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.

 

Emory Patient Banned for Giving Negative Feedback

“Please accept this letter as a formal notification to you that all the physicians at Emory Clinic are formally withdrawing from your care. We wish to terminate the physician/patient relationship that has been established because we are unable to meet your expectations.”

Emory Chief Medical Officer - Letter Banning Me Dated April 19th 2016

As I awaited Dr. V’s return from maternity leave it seemed like an eternity. The Dysautonomia continued to spiral out of control and still no treatment for it seemed forthcoming. My digestive tract took turns with my blood pressure and heart rate wreaking havoc on my body. The weight-loss continued, and my hair began falling out. I found it in my bedsheets, on my clothes, on the floor, in the bathtub and it even fell into my food during those periods when I could eat. The Patient Portal had grown eerily silent, and though I occasionally left symptom updates for Dr. V’s Nurse Practitioner it seemed almost as though the conversation had gone cold and for a time I wondered whether anyone was reading (except for Administration whose new pastime seemed to be keeping tabs on me). It became evident that nobody was going to fill in for Dr. V to write orders in her absence and to this day I don’t know why, nor could I get a straight answer to this question when I directly asked staff. I figured why waste all this time for the 3 months she was away when we could be actively working on the problem.

The Nurse Practitioner eventually told me she was forwarding my correspondence to Dr. V at home and that was some consolation. It turned out Dr. V was in agreement with my getting back on IV saline given the fact that there was not a whole lot else to be done about it other than to load me up on beta blockers which neither she nor I wanted. Even so, she held off on writing the order herself while she was home and nobody else wrote it either.

The Gastroenterologist, Dr. J.M. was reluctant to venture into that territory, viewing it as the job of Neurology, and though she was cordial enough she seemed to be very traditional and more in favor of treating the GI symptoms individually with a pill for each one. She did do a couple tests though, so it was a start. Other than the waxing and waning of my symptoms punctuated by several acute crises of near syncope, nausea, headache, and vomiting, everything else for awhile anyway was uneventful and I was grateful for that.

I thought maybe finally Administration had turned their attention to other matters,  but no such luck. Just when I thought it might be safe to go on with my life and my medical care and that maybe things would eventually iron themselves out I received a certified letter, then soon after, another copy of the same one in my mailbox with the dreaded logo on the left-hand corner in that severe, bold font in dark denim blue. I wondered what fresh hell they were cooking up this time and all the while hoped it was good news, but when I opened it, the audacity hit me full in the face like a mean left hook. It was an official letter from Emory’s Chief Medical Officer (not the male I’d been told held that position several months ago but this time, a woman whose name was unfamiliar). This was not long after I’d received the report from Patient Relations merely parroting Dr. B’s response and that of his direct supervisor who had not returned my call as she’d promised during the time before Dr. B officially bowed out. I’d called to follow up with Patient Relations and got their voicemail so I’d left a message telling them I was still sick and asked what exactly Emory was planning to do about that. For weeks I’d received no response. Although  irritating I wasn’t surprised considering how useless their “investigations” had been before. It now seemed clear that the letter was meant to act as a response, but instead of offering some sort of olive branch, concession, or compromise to come to some positive resolution the content of the letter pushed further in the opposite direction upping the ante from the once rather off-hand suggestion that I could always choose to go someplace else if I was dissatisfied to now directly telling me I was being kicked out by the Royal WE which was the entirety of Emory Healthcare. This is something that they don’t legally have the right to do because they’re considered a non-profit organization and the conditions under which they receive federal funding dictate that they cannot discriminate nor refuse treatment to patients who come to them asking for an appointment.  The doctors employed by Emory although technically employees are individuals, and some are better than others.

I have never maintained that every single one of them is crappy and I made that very clear to Patient Relations. I give credit where credit is due and I don’t blame those doctors who are genuinely trying to help for the shenanigans perpetrated by certain other individuals who choose to continue to exercise poor judgment or engage in malicious acts against me.

Despite the vicious nature of the corporate entity there are some good and caring doctors there and it is unfair for some corporate mouthpiece to be so presumptuous as to say she speaks for them. I’m sure that there are many doctors whom would blanch if they only knew how unethical those in the ivory tower behaved, and some might even decide they didn’t want to work for such an evil empire that so callously dismisses patients still needing care.

Hypocritically, Emory spends probably millions (possibly even billions of dollars) on patient satisfaction surveys, yet when a patient gives honest feedback that is negative about an experience there they are personally attacked. This information should be used to improve the system, not used against the patient, and nearly all federal civil rights laws have a requirement that the claimant not be retaliated against for filing a grievance, yet this is exactly what has been done to me.

If I were one of the decision-makers at Emory I would take that money currently spent on surveys that are used just to pump up their false image and all the new buildings being erected around town and put it towards hiring more doctors. More buildings will not make Emory better, that depends on the people in charge and it is incumbent upon them to earn the reputation they so badly want. More buildings cost money and it is highly likely that the care each patient receives will suffer and more rationing will result.

Not long after I had my colonoscopy I developed a horrible urinary tract infection and needed to call the Gynecology clinic to make an appointment since it had been awhile since the doctor there T.M. had seen me in the office, so although it was obviously e-coli she could not just call in a prescription before seeing me to culture it and make sure she was giving the right antibiotic. As it turned out, she had no openings for about 2 weeks and this thing was growing like a weed by the day, so it needed to be taken care of within the next day or two or I was going to end up back in the emergency room. That was how serious an infection I had! The weekend was quickly approaching and I wasn’t looking forward to being stuck with it until the following Monday. The call center informed me that they did have an opening at Emory St. Joseph’s location, but when the representative attempted to schedule me she kept on running into a wall.  

“This thing won’t let me advance to the next screen,” she said. “I’m getting a full stop!” I asked if the system were down and she said no, but she wasn’t sure why it wasn’t working now but thought it was a temporary malfunction. I told her in the meantime to have a nurse call me.

Not long afterwards I received a phone call from a nurse, M. whom it didn’t dawn on me until halfway through the conversation was Dr. B’s nurse. I wondered why his nurse in Primary Care would be calling when I had been trying to get an appointment with Gynecology, not her clinic. She told me “You’ve been dismissed from the clinic.” I calmly told her that they could not legally deny me treatment, that it was against Federal law, to which she got very nasty. This was odd that she would seem to have a dog in the fight, but then it suddenly occurred to me that most likely it had been she who had initiated the ban in the first place as revenge for my clearing the air with Dr. B. on the Patient Portal. Obviously there was gossip taking place behind the scenes (more unprofessional behavior than I’d known). Dr. B. was a big boy and it was petty that this woman was fighting his battles for him. She raised her voice, talking over me rudely, telling me I’d have to go somewhere else.  

“Where exactly do you suggest I go on a Thursday afternoon?” I asked.

I don’t know, you’ll just have to go somewhere else.”

” That is illegal” I reiterated. “Emory Clinics get federal funding so you have to accept patients who wish to make an appointment. You cannot discriminate or cherry-pick. I’m an established patient with this doctor and have been for several years”.

“Go someplace else!” She yelled into the phone and hung up. I called the call center immediately and reported what had just happened. A young woman in the call center apologized and said that I shouldn’t have been treated that way and gave me the name of a man who was the supervisor there and said she’d leave a message for him to call me, but he never did.

By the skin of my teeth I was able to get help from a mobile primary care service. Initially they were going to try to get home healthcare out here to get a urine sample to culture but that fell through and we found out that they didn’t do that kind of thing, so a Nurse Practitioner from the mobile service took mercy on me as she too was concerned about my having to wait through the weekend because of the severity of the infection. She called in a prescription for 14 days of Cipro. It turned out I needed all 14 days because the infection was pretty entrenched! Clearly my immune system is compromised, as it seemed to have sprung up overnight and became full-blown faster than normal and was affecting me systemically by the time Friday rolled around. Once I got the antibiotic it took awhile before I noticed feeling any better although slowly but surely the infection started to abate.

I looked up information on this Chief Medical Officer and discovered ironically that she’s an OBGYN herself! Surely she knows what untreated e-coli infection does to the human body, especially to someone chronically ill who is immune compromised. She should be ashamed of herself! What doctor with any sense of ethics does that! She needs to remove the block from my account immediately!

Then a few weeks later I began feeling severely faint and nauseated and ended up in the ER again. The ER doctor at St. Joseph’s wanted me to follow up with my Cardiologist in just a few days but he had no openings until July, so I searched out a Primary Care doctor and luckily was able to get an appointment sooner. She seems very nice and was open to my starting back on IV Saline infusion and was willing to order it but wanted my neurologist to fax her something saying she was OK with it first. She also thought I should see an endocrinologist as she said that there are certain endocrine problems that can cause Dysautonomia.

Dr. V. returned to work and I saw her on June 3rd. We had a long conversation and I told her everything that has happened and she was very understanding. I detected none of the pushiness I’d seen in the first appointment. I thought maybe she was feeling under pressure knowing she’d be giving birth any time, so maybe what I saw the first time wasn’t her usual personality. During this second appointment she seemed very warm and caring and I could tell she really felt for what I’ve been going through and wanted to set the record straight. She is in total support of my having these out of town evaluations and said that Emory is woefully lacking in the right equipment to do this type of autonomic testing. She told me she wanted to know how the two upcoming appointments with the specialists go. Then she ordered a number of blood tests related to various endocrine things to give the endocrinologist a head-start and one or two tests that could be done at their lab on mold. I left there feeling a sense of renewed hope, but then I got home and found that I couldn’t set up the next follow-up appointment with her. I finally have a neurologist who is invested in me and I want to continue seeing her, and make no mistake about it I intend to fight to do so.

 

 

Medicare Home Infusion Site of Care Act of 2015; S275 HR 605 – Your Support is Crucial

As we speak new legislation is being proposed which would help many people obtain IV Saline infusions at home; the Medicare Home Infusion Site Care Act of 2015 .

Bettemarie Bond, a patient with Dysautonomia including a malfunctioning GI tract, and Mitochondrial Disease, once able to obtain these helpful infusions, suddenly found herself unemployed and on Disability and at the mercy of the Medicare system for all her medical needs. No longer covered by her previous employer’s private insurance, the stark reality hit her full in the face as she realized that she was unable to obtain them.  

Her self-advocacy led to the launching of a grass roots effort in her hometown in Philadelphia to get Medicare to cover home infusions. Little did anybody know that her online petition would gain such traction on a Federal level and interest some key legislators!

Kendall Van Pool, Vice President of Legislative Affairs for the National Home Infusion Association,  wrote an article here which goes into more detail about this ground-breaking piece of legislation and a few other related bills.

The original bill, HR 2581 contained verbiage which would not have allowed infusion at home, as it would contain a change in method of reimbursement referred to as Average Sales Pricing (otherwise known as ASP). This is a reimbursement method that applies to physician reimbursement (and in particular applies to delivery in an “outpatient hospital” department). Falling short of true access by patients who are often homebound, several legislators were concerned that such legislation as the first version was too restrictive in not allowing patients the choice to be treated at home with this modality.

Next came HR 6, the 21st Century Cures Act. Chairman Fred Upton (R-MI) of the House Energy and Commerce Committee is hopeful that this version passes in the Senate.

To contact Kendall Van Poole you can call;

(703) 838-2664 or e-mail him at Kendall.VanPool@NHIA.org  

An election year; 2016 could be just the right time for Congress, and thus Medicare, to fully embrace this option if enough patients, families, and healthcare professionals come out in strong support of this exciting new legislation to give patients more choice and flexibility in their treatment and in what setting it’s delivered.

Those of you who follow this blog regularly know that this is something that has helped me when I was hospitalized in November and that my struggle continues to obtain regular IV Saline infusions at home for my Dysautonomia. As my gastrointestinal difficulties continue to increase I am finding it difficult to add any more pills to the growing number I must take by mouth. My GI tract really can’t tolerate anymore by mouth, so for people like myself and Bettemarie Bond, going the IV route makes better sense than to try to force more pills down one’s throat into a stomach which is already compromised and most likely not absorbing what it takes in.

For those who can get it IV Saline can make a notable difference and allow one to enjoy life despite one’s chronic illness, while those who cannot get it often suffer a long and agonizing medical decline and de-morale as they continue to find these infusions always just out of reach and at best short-lived while only receiving them in an infusion center or within an inpatient setting (insurance or money permitting).

Notice in her video clip above that Bettemarie says she had her heart rate drop during a procedure. This just happened to me today as I was having a Colonoscopy. I had a really rough time even before going under mild anesthesia; suffering chills, dehydration, and changes in heart rate, as well as Myoclonus triggered by the body’s inability to keep me warm enough.

Ironically the nurse who had hooked up my IV saline before I was taken to the room where I had my procedure had in her haste not secured the tubing to the IV and another nurse found me bleeding all over the bed and the Saline half empty leaking on the sheets. Having gone through drinking the prep (which invariably strips one of electrolytes) and then not drinking my usual 24/7 ice water in the few hours prior to the Colonoscopy left me all the more in need of all the Saline I could get. I had to fight to get the nurse to wait in recovery for the last bag to finish because she was in such a rush to hurry me out the door and to fill the bed with another patient. It was as though I were a car at the local Jiffy Lube rather than a human being in need of care after coming out of the Propofol.

It didn’t seem to matter how many times I reminded them of the fact that I am Dysautonomic. It was as though their biggest concern was for their employer and the dictates of the facility, not so much for my best interest. I found it crass that they were more invested in meeting a quota of patients served per day than in serving the individual patient with the dignity and care that all human beings deserve. (I will say that the one man in anesthesiology who mentioned my heart rate dropping was an exception to the otherwise high-volume/low quality workplace. He did go out of his way to make me as comfortable as possible given my complex medical fragility, and for that I am thankful).

Let’s all work together to make this legislation the law of the land. Leave a comment, share, write your representatives in Congress, and/or CMS and HHS, and sign the petition so that the Medicare Home Infusion Site Care Act can improve the lives of Medicare patients who need/benefit from home infusion. Although not a cure, these infusions can make life more meaningful and reduce suffering until cures can be found.

Managing Fatigue, and Conserving Energy

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Caramels – 50 Mg. each

                 25 Mg. Hard Candy     25 Mg.Capsules

With extreme fatigue I find it’s important to pace myself and to look for products, activities, and strategies that might at least over time increase my energy level or at least conserve it as much as possible.

One thing I am very interested in (especially since it has become more and more difficult to tolerate solid food) is Cannabis edibles. (I have been sampling a few that melt away to compare effectiveness, as all the pills I’m taking now are about to gag me).

While none of the products I’ve tried is the “real” stuff with all the elements of the plant, I know that as nutrients some of these products have at least some nutritional benefits of the hemp they are made from.

The above Fleur de sel Caramels with sea salt purchased from a small maker called Nutrient Bomb where I ordered on Etsy have an interesting flavor almost like black tea, and smooth and very stretchy texture. The seller also sent me a few of their other products as free samples. The pills I’m not really keen on (for the reason I mentioned earlier), but the hard candy squares were pretty good tasting and I couldn’t taste the CBD, although the flavor was hard to identify; somewhere between cinnamon, cherry, and mild menthol.

If nothing else, I’m trying to eat 1 caramel a day (I just got 9 to test out and see whether they improve my energy level or GI symptoms). So far I’ve only had 3 days to try them.

After seeing a new Gastroenterologist the day before yesterday I discovered that I have really lost alot of weight. I knew my pants were beginning to fall off me but it did’t hit me how extreme it really was until she mentioned it. I’ve started losing my hair too and it has on occasion literally fallen out of my head right in front of me without provocation! I have been finding it all over my bed sheets, clothing, etc., even on the carpet. I don’t know if it’s some sort of endocrine problem or what. It’s very strange, though. I hope it doesn’t continue dropping at this rate or I might end up bald!

My muscles often burn and even the slightest exertion takes everything out of m so I’m trying to conserve energy as much as possible.

I find that one of the best ways to do this is to literally sleep whenever I feel I need to and not force myself to stay awake because of the time of day or what I’m doing.

Sometimes I need to sleep alot more hours than normal in order to have the stamina to shower once a week, and since I currently don’t have anyone to help me I just can’t do it everyday as I would like to. I have to let certain activities go out of sheer necessity.

I find that alternating activities more often helps as well. Changing positions is very important if you are bed-bound because you are less likely to develop pressure sores, and if you have chronic pain and muscle spasm that’s triggered by sitting squarely putting pressure on your butt, then shifting to one side or the other can make things easier.

Being in pain in itself can wear down your energy and aggravate fatigue and it can make you irritable. I find sometimes pain creeps up on me before I realize it (because I’m so used to it), and all of a sudden I feel awful. I try to identify as best as I can when I’m starting to have pain and take my pain medication as soon as I notice it.

At times I have mistaken it for fatigue when it was actually pain starting up. I have now become pretty good at recognizing this pain aura and know when I need to take care of it to prevent a cycle of pain and fatigue from being set off.

As I also have some severe sensory issues I know about my body that I cannot tolerate any type of suffering for very long before I’m in all-out sensory overload. Symptoms I find are causing significant distress need to be taken care of expeditiously; no waiting around and procrastinating. They need to be treated now. This is something I was not able to get through to my GP, but it is absolutely crucial that any physician working with me understand this and respect it because it’s not that I’m being demanding or being a diva, but that I really can’t stand it. With the way I am wired, this is not a choice or a mere matter of convenience as some may assume, it is a need.

So if any of you readers are in the same boat it might be good to try to have a talk with your doctors about this as early as possible. If they are truly interested in helping you they will understand and try to accommodate you. If not, then it’s better to find out sooner than later after you’ve become invested in that doctor/patient relationship and find a doctor who will understand and meet you where you’re at on this.

Maybe I made the mistake of not telling mine this soon enough, but I think I was less aware of it almost 13 years ago when I began seeing him, so I’m not sure I could have made the connection back then. It has been a long process of self-discovery to fully understand how my brain and body works, but now I know alot more than I knew then and often learned things through rough trial and error.

It takes more energy for me to withstand protracted suffering (pain, stomach upset, near syncope, etc.) than it might be for somebody who does not have sensory issues. It’s as if somebody turned a dial way up and the longer I go with untreated symptoms the more excruciating it is. Someone who does not experience this themselves cannot ever fully relate, but a truly compassionate doctor will take your word for it and not expect you to jump through yet more tiring hoops that only make your life more difficult and deplete your energy.

My not being treated for my Dysautonomia since November, I’m sure, has taken a toll on me both physically and emotionally, and it occurred to me that it might actually be causing me to burn fat and muscle at an unhealthy rate. I suspect I’m probably in ketosis.

This state will deplete the little energy you have remaining very quickly. I’m trying to drink some Pomegranate juice I still have in the house in-between drinking my ice water, as Pomegranate is a super-fruit filled with anti-oxidants and has lots of nutrients in it.

When I need something from the kitchen I try to bring everything in there I need to at the same time, and everything back from the kitchen I need at the same time.

Although I’m in a power wheelchair I get fatigued very quickly just sitting in an upright position and the one I currently have has no neck or headrest so my neck can’t hold out unsupported for more than about 15 minutes.

Having the right adaptive equipment can make quite a difference. I’m working on getting a better chair that will support my body more equally and allow me to recline if I suddenly start to feel faint when I’m up.

Whenever possible I also try to put my forearms on the counter when preparing something, I now don’t bother putting dishes inside the cupboard like I used to, but keep them on the counter so that I don’t have to reach and strain to get a plate or a bowl after taking them out of the dishwasher.

Mental concentration for long periods of time tires me out, so I try to break up those activities and when I feel worse I stop and either lie down and totally rest or sleep, or I do something that requires less intense concentration.

I recently went onto Listia , (which for those who are unfamiliar with it is a site where you can get items for points rather than money), and bid on and won two adult coloring books. Being an artist who is used to drawing, painting, and making jewelry, when I saw these becoming popular my first impression was that is was a little bit wussy to color prefab designs.

However, as I have gradually lost some fine motor abilities in my hands when it comes to the type of art I have done for years and now find impossible and frustrating, I understand the appeal of these for adults with chronic disease.

I think what it is that is so freeing about these is that certain types of executive functioning such as planning out where to position an original design on paper, perspective, and composition require the artist to expend alot of energy.

When you are healthy you may not even be aware of it, but when you’re ill you definitely feel as though the act of creating (the very thing you love) becomes a chore of monumental proportions!

Not being required to do these things that tax your brain and attention gives those of us with chronic illness a break from having to plan things out to the 9th degree, an activity which can sometimes just be too much, especially on days when we have alot of pain and/or fatigue and brain fog.

I would love to hear from readers what you do to conserve or increase energy. Please feel free to leave a comment and to subscribe.  🙂

 

 

 

 

 

A Strange Irony

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Things have become increasingly precarious as time goes on. I am used to spending time alone and often prefer it but it doesn’t really hit me how alone I am until I find out I need help with certain things and can’t obtain it, yet can’t do certain functions myself either. Then all of a sudden it hits me that there’s nobody there but me, at least noone reliable. With my body becoming less and less reliable that is really becoming a problem.

The past few days have been unbearable with the dysautonomic symptoms out of control and nothing I can really do to stop them. The near fainting spells wake me up from sleep and along with them comes heart arrhythmia; my heart pauses and then beats weakly with a faltering type of flutter. I feel so weak now and just want to rest. I’m finding now that my GI problems are becoming more baseline and that I can’t tolerate much by mouth except yogurt and applesauce. Last night the applesauce didn’t even sit as well in my stomach as it had just the day before. The previous day I’d tried making a rice bowl with cheese and some sour cream and some seasonings and ended up in bed on my side clutching my stomach. It felt as though by the next morning my food was still up in  my throat. It was not digesting.

Because of all the stomach upset I have not been able to take most of my medications. It’s harder and harder these days to take anything by mouth but my ice water.

I’m now running out of things I can eat in the house anyway and have neither the money nor the stamina to go out and get more from the store.

There was one person who shopped for me occasionally but he has dropped out of sight for weeks now and I’m not sure what has happened to him. The few people I know locally seem to always have tenuous phone and internet connections. They either don’t receive messages due to a technical problem or else their services are cut off on any particular month for non-payment.

Today I got word that my application for the Independent Care Waiver through medicaid was denied. The Reason? Because I am “wheelchair bound and have no circle of support” both things I have no control over. I wonder what kind of people came up with those harebrained regulations?

So if someone is in need, is disabled, with limited mobility and has no support then the response is you don’t give them support? How much logical sense does that make? 40 hours of service a week is sure better than nothing! I would take that if that’s all they can offer, but somehow my voice doesn’t count. This is another example of the patient’s needs being totally and arbitrarily disregarded.

Two more weeks to go before I find out about the other waiver. That one gives you less hours but doesn’t have the requirement that some person in the community sign a form, so we’ll see where that leads.

So nobody’s regularly checking on me locally now and things are worse than they were several weeks ago both in terms of people coming around and in terms of my health.

I have also been unable to reach my son. His new phone contract is now long distance if I call him but if he calls me it’s free to him, but I now get a generic voicemail when I leave a message. Emails have also been unsuccessful. They go through but no response.

I need somehow to reach my aunt to let her know that I will likely need someone to go with me to some of these out of town independent evaluations. She would probably want to know but I have heard nothing from my cousin for months now from her Facebook account who had said she’d contacted her and a few of her children after I got out of Piedmont.

As for making new connections, it’s a bit late for that. I’m not much more than a pet rock at this point, lying in bed only able to sit at my computer propped up on pillows. Honestly, who locally would want to know me? I’m sure they’d be bored after a few weeks at best. I can’t really go places, I have no money to go out to eat these days, and if I did the food would make me sicker. Then there’s the fact that my underlying disease is untreated and totally out of control and this makes me not the best company because I have to first focus on saving my own life on a daily basis. That doesn’t make room for much talk of everyday things that others take for granted and are part and parcel of most friendships.

On my better days I can talk about art and politics, and animals, and if I don’t have to talk I’d much rather hear about their lives than talk about my own as answering questions in itself has become taxing and painful, but my better days are getting fewer and fewer now.

Bills are falling by the wayside because my brain can’t hold any more than what’s right in front of me right now. Processing is at a slow crawl.

I find it hard to do much at all today besides making sure my glass of ice water has enough ice in it. Going to the kitchen even in the wheelchair is exhausting to go get more ice, but I hope I can continue to do at least that because I don’t want to be further dehydrated.

Beneath the surface I am grieving a life lost and the realization that my days are numbered. This is not some sort of depression but a coming to terms with what is, and what could never be despite all my efforts. I never wanted it to end this way, but at least if it has to be I will die at home with dignity. If I don’t make it through then perhaps they will find out what’s really wrong at autopsy and if it’s genetic as I suspect these results will be shared with my son so that maybe he won’t have to meet the same fate as he gets older.

As with any disease, early detection and treatment are key, even in those without a cure. If my story ends up a cautionary tale then my life will not completely have been in vain.