Diagnosis is a Winding Road; Finally Getting Somewhere!

Just like my refrigerator which has finally gone caput after intermittantly working and not, my body has persisted in giving signals which cannot be overlooked forever. Finally, finally there has been a break in the case! I received a call … Continue reading

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

Treatment or Healing

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

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

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

Good idea

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

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

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

Untrusting Woman

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

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

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

On Disc

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

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

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

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

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

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

Doctor in the office

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

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

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

“Did you report it?” she asked?


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

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

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


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

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

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

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

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

Rolling the dice

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

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

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

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

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

Dismembered Body

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

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



Medical Record Inaccuracies and Doctors’ Personal Agendas

Doctor in the office

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

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

Hot idea

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

Stubborn as a mule

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

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

Buffalo in winter cold

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

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

Taking notes

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

1) Charting must be accurate and precise

2) It must be relevant

3) It must be written to benefit the patient

Accuracy and Precision 

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

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

My diagnosis was obtained by objective tests 13 years ago. 

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

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

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

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

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

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

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

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

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

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

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

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

Field of Medicine

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

1) I have dysregulated blood pressure,

2) chronic constipation,

3) near syncopal episodes,

4) Muscle weakness and spasticity, and severe fatigue

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

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

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

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

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

Solving the puzzle


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.


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.

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!


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

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


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

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.


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

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

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

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

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


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

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.

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.

Yummy Treats that Treat What Ails You; Not Waiting For Hell To Freeze Over

500 Mg. CBD Infused Chocolate Covered Pistachios and Free 50 Mg Hard Candies DSC_0010

 Made from hemp with no THC content to make you high, many CBD edibles are not considered an FDA-regulated substance and are legal in all 50 states!  CBD (Cannabidiol) is basically considered a  neutraceutical or nutritional supplement. Medical cannabis is growing in acceptance each day offering another natural alternative to traditional medicines. Many patients find they need less narcotic pain medication when using this regularly.

I decided when things began to go south that it was finally time to take things into my own hands obtain some medicine that doesn’t require a prescription from Dr. Slow-as-Molasses.

This has been on my to-do list for some time but with everything I’ve had on my plate and all the evaluations to set up and all the fires to put out around Emory and testing and orders, etc. I just now have gotten around to putting in an order for some edible CBD (Cannabidiol) Cannabis infused items.

I bought 2 packages 500 Mgs. each of CBD infused chocolate covered pistachios. The woman who made them, Carrie, of CBD The Healthy Choice on Etsy was very helpful and recommended I start out with 2 or 3 nuts (which is about 5 Mgs.) and work up from there until I notice relief. I started with 3 yesterday. I even got 3 free hard candy hearts, each of them 50 Mgs. a piece as a bonus for my purchase!

500 Mg. CBD Infused Chocolate Covered Pistachios - 1 starting dose in hand DSC_0011

This is my first time trying edibles and I must say they are delicious! I couldn’t even taste the CBD! For those of you thinking of trying this option I’ll continue to post in my blog how it goes as I ramp up.

It was hard for me to limit myself to just these 3 because they were so tasty, but it’s important to remember that just as with any other medicine they can have some side-effects if you overdo it. Depending on the strain used some types can be adrenergic, especially the Sativa strains, and patients who were overzealous have on occasion ended up in the emergency room. Indica has a more calming effect, but at the time of this writing I’m not sure what variety was used in the making of these I purchased. I’m in the process of obtaining that information so that if this relieves my symptoms I’ll really know what works and can keep track. Eventually I’d like to compare several strains.

Since I don’t know yet how my body will react I think I’ll just increase it one nut a day. Today I’ll take 4.

This is very hopeful, and I could really use some hope right now. Since I haven’t been getting much in the way of real treatment other than pills to control the individual symptoms this powerful medicine just might make what I have to face alot easier, both physically and emotionally. Maybe in addition to helping my movement disorder it will help reduce my fear so that by the time I see the movement disorder specialist in July I won’t panic when he does his exam.

I want to wait a little for the jitters to die down after seeing the one at Emory but have a possible lead on a local neurologist outside of Emory. I’m also working on getting something set up with Vanderbilt too in order to get my Dysautonomia officially diagnosed and finally put all this controversy to bed. Emory just seems to bring more drama and it’s really exhausting. I hope I can find my way out of that system soon, at least except for seeing my pulmonologist and maybe for a few targeted services.

There is a center in Texas I contacted as well that does the Tilt table test and while it sounds like they do a fairly state of the art one, they don’t seem to do many of the other autonomic tests that Vanderbilt or Mayo does, and Texas is an 11 hour drive, so if they miss it that’s a long way to go for nothing. I’ll have to see how feasible that will be in terms of logistics. Which ever clinic I choose to do the assessment I really need to come home with a piece of paper for it to be worth my while.

I’m beginning to have a pretty clear idea now what the global underlying condition is encompassing all my symptoms, (Myoclonus, Dystonia and Dysautonomia included). It has been a long process of narrowing things down but I think I’m closing in.

I guess most of my current doctors will feel disgruntled that I figured it out before they did and have bruised egos having been outdone by a “mere” patient, but the truth is if they really care (or ever did) they should be happy to have somebody figure it out and start treating it sooner rather than later whether it’s me, or the local home repair guy. I’ve always been several steps ahead of them and when you’re suffering and most of the doctors are sitting on their hands, sometimes you’ve just got to take the bull by the horns and work with what you’ve got.

Given that I may not have complete control of what my body does, now or in the future, at least there are a few things I can control and that is some comfort.

Another blog called The Cannabist reviews various such products. The writer, Brittany Driver, lives in Colorado, home of one of the first states to fully legalize. In her blog she documents her own experience in using edibles for her back pain. Hers did contain some THC though (approximately 53%), as Colorado’s laws are more lenient about that than many states.

Stay tuned to see the results of my little experiment.

Please leave a comment below even if just a sentence or two to let me know what you think. I hope my experiences will help and empower others struggling with chronic and hard-to-treat diseases and disorders.

Sometimes our greatest challenges generate opportunities we never expected.  🙂

May you all find your silver lining.

Power to the patients!


Emory; Slow As Molasses; Treatment Still Stalled

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I sit here trying my best to brush out the mats from my hair that have been developing because I have to sleep more than I used to and the fatigue and muscle pain some days are just too much to brush it. Such is life for those with chronic disease and no caregiver at home to help with these types of things.

I get through each day on a wing and a prayer, hoping every day that something positive I’m working towards will come to fruition. If I could write all my own orders and prescriptions I would, as it seems now that getting everything I need depends on some MD’s name on some form or another and my doctor has decided somewhere along the way to become one more obstruction along this already bumpy road I’m traveling on. He finally wrote me back on the patient portal today to say that he couldn’t go along with the continuous saline infusion, and that he’d done all he could with home healthcare.

I can barely bathe myself although the shower bench helps somewhat. I still can’t reach everything on my body, and that’s not me, and its not laziness either. I’m very meticulous about getting clean and I don’t like it being half-assed and I like to shower everyday, but without help I simply don’t have the stamina, and because of my stiffness I find it hard (and on some days impossible) to reach my toes to wash them. I can’t reach my back even with the long handled sponge thing I got through a local non-profit organization because my arms just won’t bend in the right ways to reach where I need to reach.

Daria, the Care Coordinator told me last week on the phone that they would be glad to pick up my case again and are just waiting for my doctor to write the order and submit a plan, so the obstruction isn’t coming from them, nor from my insurance. It’s coming from my GP. Why does it not bother him that I am home alone without proper help so that I can do the activities of daily living? After 12 years you’d think he’d care that I’m here struggling and using up precious energy reserves I don’t have just to do the simplest things.

Nothing has really improved in my functionality, so why is that call to discontinue services? If anything it calls for increased services, as this disease isn’t going away in 6-8 weeks. I don’t want to deal with it either but I don’t have that luxury of just ignoring the whole thing. I still cannot do my own grocery shopping and the guy who was helping with that is getting more and more lax, getting 1 item when I ask for 3 of something, 2% milk when I asked for whole milk, fully cooked low-sodium bacon when I asked for the applewood smoked bacon that he got the last time, and running out of things and being SOL because I don’t have things needed to complete a recipe.

I find myself time and time again having to prostrate myself just to have the basic necessities and get through life. I have no family to speak of to take care of these duties, and in order for the social worker with the home health agency to help me apply for longer-term help my doctor needs to get me recertified with them. I really need a personal assistant and in order to get the Independent Care Waiver through Medicaid so I can get one he needs to send his doctor’s notes to Shepherd Spinal Center so I can get the pressure mapping evaluation for a wheelchair that will support my whole body properly. The paperwork for the Independent Care waiver asks for the wheelchair specs (in addition to other help I need) and it has to be specific, but Shepherd can’t schedule me until he sends the doctor’s notes.

In addition, the Modified Barium Swallow Test he ordered in December must be updated because the December prescription is too old. I have asked several times yet he has not done that. I told him that it’s becoming too much to have to give these constant reminders and that I need him to take some initiative and go to bat for me as my GP.

What the hell have I done to deserve this? I’m trying not to have any more medical neglect and make things come out better for the second half of my life but nothing I say seems to make a difference. No amount of self-advocacy does any good anymore. It’s bad enough not to have any control over the physical processes in my body, but then to have no control over everything else is just too demeaning for words.

It seems that these doctors see me as a non-entity and my voice is of no consequence in anything that happens in my care. They just do whatever the hell they want whether I like it or not and I’m not supposed to have any say in the matter. Well, fuck that shit! I’m a grown-ass woman and it’s my decision what is done with my body and not! They are only consultants (I like that term better than doctor and I think Australia and the UK has that about right). Who died and made them king!??? These doctors are supposed to be working for me, not the other way around. I’m getting really fed up!

I asked my GP what exactly happened that one minute he was ready to treat my Dysautonomia with the continuous Saline infusion and now he’s not and I asked if anyone at Emory had scared him out of it and if so I wanted to know whom.

If I find out Dr. M. and/or his buddies have anything to do with this I will be a ball of fire and will not rest until justice is done. I don’t need this right now as I’m trying to get to the bottom of my underlying condition and get help for it.

Just like I said to Dr. H., if a patient is suffering then treat it! It’s as simple as that. There is no excuse to sit there and allow someone to suffer when there is something that can be done to alleviate it and it’s relatively safe.

I found that this mode of treatment works for me so I should have access to it if that’s what I choose. I’m well aware that it won’t cure it, but if it will give me more energy, help my bowels move more regularly, improve my appetite and reduce GI problems, make me less thirsty all the time, stabilize my blood pressure, and make me feel faint less often then it’s worth it to me! He has given me not one good reason why he should not.

The port can be put in at Emory’s outpatient center, and home healthcare can do the infusions with their nurses, so frankly what’s the problem??? It’s not like I’m asking for a breast augmentation, this is something medically necessary so I can have some quality of life and it may even prevent an emergency down the road!

He has not come up with a better idea and unless and until he is willing to go out of his way to do the amount of reading and researching I do each day to help come up with something better then as far as I’m concerned he just needs to defer to me.

Besides, I always see the trajectory of things. It’s one of those special perceptual talents I have. At this rate I will probably end up back in the hospital. That is not the preferred way to do this. This method is supposed to be proactive, but left untreated, persistent dysautonomia can be dangerous and cause all sorts of complications. With the blood pressure readings they documented at Piedmont it would be medically irresponsible not to treat it at this point. Maybe in the past it wouldn’t have been as crucial, but now that we have that information from my hospitalization records (and I assume it’s been entered into the electronic records system at Emory) it is really indisputable.

If Dr. V’s hypothesis is right about this whole thing being caused by my Sarcoidosis then I will most likely be considering other treatments that are given by IV such as antibiotics or IVIG, and having that central line will take alot of the demand off my stomach and GI tract in addition to being useful for the Saline treatment. I’m taking about enough pills by mouth right now. If I need to switch from Tizanidine to Baclofen for my spasticity that is the quickest delivery method there is to have it work immediately. They can draw blood from it and do a number of things that will make life easier for me.

If it’s not my Sarcoidosis that is the underlying condition differentials could be one of several Atypical Parkinsonian Disorders such as Multiple System Atrophy (MSA) or Corticobasal Disease (CBD). It was uncanny how many of the symptoms I have that fit the description of either. It was also interesting that the neurologist who gave the lecture in the Youtube video said that they have some symptoms in common with ALS. If I have one of those then it makes perfect sense as to why one might think it was ALS initially. Apparently these other two are even less publicized so they can often go longer than ALS to be detected and diagnosed. These can cause Dystonia, Dysautonomia, and Myoclonus.

Today I was in such agony I could hardly stand being conscious. It was one of those days one would have to die to feel better (and I’m sure those of you reading who have chronic illnesses know how that is).

My face and body were hurting really badly (that same “feel the burn” feeling I had back in August along with inflammation), I had alot of nasal congestion, the roof of my mouth ached, I was nauseated and had colon spasticity. I had to take Tizanidine and my Tramadol and Ibuprofen and sleep it off before it finally let up. I also had more fasciculations in my big toe on the right foot that lasted quite awhile after my nap.

It’s Wednesday and still no call from Radiology to schedule the Gallium Scan. I called and left a message for the nurse to call me and let me know what’s going on and when I can get this done. I hope Dr. V. didn’t go on maternity leave and forget about it.

Yesterday I got stuck lying on my back and couldn’t turn myself for at least 10 minutes and nearly had another fall when I finally managed to roll my bottom half off the side of my bed. This happened alot in the Summer and Fall and I thought it had stopped but looks like it was just taking a temporary break.

I’ve also noticed my jaw dislocating, and cracking in my jaw and in my cervical spine over the past week or so. That needs to be looked into. I asked him to order an MRI of the jaw and sent him exact specs for how that order should be written to get the best view of it. We’ll see what he does with that. I also asked him to get a copy of the first imaging that was done 10-12 years ago by the oral surgeon at Emory which showed I had TMJ so that we can compare and see if there has been further degeneration.

If I take the time and energy to go in to see him and come up empty-handed I am going to be pissed! I expect these orders to be done, and I think he should also have reached out to the movement disorder specialist I’m seeing in July to help facilitate and give him some history and try to make this as easy for me as he can so that the experience will be fruitful and so I’ll be treated with respect.

If my GP conveys to the movement disorder specialist that he’s behind me 100% then it is likely that I’ll be treated well and that the specialist himself will put 100% into diagnosing and truly helping me so that I can come home and not have to continue to prove myself ad nauseum as I have had to up until now. That is probably the most tiring thing I deal with on a day-to-day basis and its high time that my condition be given the credence it deserves. I did not ask to be sick nor to be poor and I believe everyone should have access to the care they need for their conditions no matter what their station in life. It’s just a matter of dignity and humanity. At the very least these doctors should take care of these medical problems expeditiously and give me the best quality of life possible under the circumstances of what my limitations are.

Tomorrow I am seeing my liver specialist. My liver enzymes have been elevated chronically now for about 8 or 9 years. I think at this point they need to do more than monitor it. A test result doesn’t keep cropping up like that for that long for no reason. It’s there to tell us something of significance. If it’s not my Hepatitis B reactivated then they need to find out what else it is. Maybe my liver can elucidate some useful clues in solving the other stuff.

I’ve pretty much run out of patience with all the diddling around and delay tactics. I’m quite sure if I had money and top of the line insurance I’d have a diagnosis by now and would have been on treatment for years by now, and maybe I wouldn’t be near as disabled as I am currently. There’s alot of rationing the doctors never tell you goes on which determines how aggressively (or not) they treat a condition.

The poor die silently of medical neglect every day and for the most part it never makes the news. I do not want to become one of those statistics.

The Big Picture; Goals, Plans, and Support

Drawing of Girl In Windowsill

The past week has been a series of gains and losses, trying to get as many things in order as possible, but having to wait for others to do their part, and aside from my pulmonary function tests, it’s going nowhere fast. I’m trying not to lose hope but it feels like just when some progress is about to be made it stalls because some key piece isn’t done (and it’s always something I can’t do myself, such as writing an order).

Updated paperwork for the Barium Swallow test My GP ordered in December is on hold, doctor’s notes faxed to Shepherd Center for my Wheelchair pressure mapping is on hold. Home healthcare is on hold until my GP can get a plan written, and somehow between the last two times we talked something changed and now he’s taken back his promise to write the order for the IV Saline to treat the Dysautonomia. Based on what? The documentation from Home Healthcare; nurse’s notes from taking about 1 blood pressure a week; only based on that, which of course isn’t enough to show anything. He has the records now from Piedmont with BP readings that were wildly dysregulated for 11 days, and I’m not miraculously cured, so I wonder, what gives?

Is he afraid that Dr. M. and his saboteurs will attack him for treating me when every symptom is not going on every minute of every day? Or does he think that Dysautonomia isn’t that big a problem and patients should just suffer through it? The constant fatigue, weakness, exercise intolerance, chronic constipation, constant thirst, pain, and getting cold 10 times a day and then hot when I add a layer of clothing, waking up feeling faint, intermittently purple feet, and unsettled GI tract beg to differ.

He says we’re at an impasse and I need to come in (which I’ll gladly do but his first long appointment isn’t until March and there’s lots to talk about so I don’t want to have it cut short and then have to come back). It’s alot to demand of my body to go to the doctor’s appointments I’m attending this week.

My GP thinks a neurologist could handle this better than he, but the truth is most of them don’t know anymore about Dysautonomia or Dystonia than he does. These are two orphan disorders that exist in a sort of no-man’s land. I seem to be cursed with these damned things. Why couldn’t I get something common and well-researched, but no, I always seem to get the health problems that nobody really gives a crap about.

At this point I would almost welcome a diagnosis of Parkinson’s Disease since everybody wants to work on that. Right now I’m laughing at the irony of it all, but give me a minute and I’ll probably be crying when it dawns on my just how screwed I am. I’m in the wrong part of the country for what’s wrong with me. The foremost experts are not at Emory.

I fear tomorrow like the plague. The very thought of seeing another neurologist, especially a general one I don’t know and has no reviews scares the hell out of me. She’s a woman and one would think women are more gentle and generally kinder than male neurologists but one can’t be too sure, as there are always exceptions, and as we have seen from Dr. H., sometimes women doctors can be very deceptive even when they seem to be on your side.

If any more harm comes to me at the hands of these doctors I don’t know if I can take it. I’ve been through enough already and it’s time that I get some support from a neurologist that values me and won’t treat me like I’m making this up or crazy, or some hypochondriac and doesn’t feel threatened because I can think for myself and be an active participant in my own healthcare. I do all this researching because nobody else will and if I don’t look out for me then who will? I have no spouse to have my back, no family that makes sure I’m safe, nobody else to go down to Emory’s Administration when I’m not treated with respect and dignity and demand that something be done. There is just me here, and a dog and a snake.

And now my GP is becoming paralyzed with inertia. My pulmonologist is being very supportive, but there are things he can’t do that my GP can and should do as the doctor who has known me for 12 years and has seen me at death’s door and knows that can happen again if too much in my body malfunctions. I am teetering on a very sharp edge between stability and instability and my body is still unpredictable. The only reason I’m somewhat stable right now is that I’m seriously hunkering down in my bed. We are just treating the symptoms with medications; none of which are disease-modifying, so there’s no telling what might happen. I don’t want to end up in the ER again and get abused or neglected like last time. They won’t understand, most likely, and I can’t take the risk.

The whole idea of Saline infusion is to be proactive and to stabilize the Autonomic Nervous System over time; not just to put out fires when someone is in dire straights like I was in November and December. This can prevent the need for emergency hospitalization if maintained. In an article written by Dr. Santa Maria, a Boca Raton, Florida doctor who regularly treats Dysautonomic patients in his clinic he says; “It is best to give saline preemptively on a regular schedule instead of on an emergency basis when a patient is already in the depths of their worst symptoms. Regular hydration can provide a sense of stabilization and normalcy for patients, allowing them to have more control over their bodies, health and ultimately—their lives.”

Dr. T., (the temporary neurologist I’d hoped would be permanent several months ago) has now agreed to see me for my Myoclonus and will refill my Keppra prescription but I had to make a follow-up appointment which isn’t until July; just a week before my consult with the out-of- state movement disorder specialist. I wrote and told her I wish it wasn’t so far away because I would like to discuss alot of these neuro issues with her.

Maybe there is something she can do to bridge the gap even if she doesn’t feel she has the skills to manage all the neuro conditions. Perhaps she can speak with the specialist on my behalf and help pave the way so that I won’t waste a trip up there and leave empty-handed.

I downloaded and took a closer look at the report of the cervical spine MRI she had ordered and interestingly it showed some foraminal narrowing at C5 – C6 and C6-C7 due to the bulging discs, and the one done at Piedmont hospital just a month later did not show that but had alot more degenerative facet findings on C2 through C6 on both sides. It just goes to show that alot of these test results are dependent on who is interpreting them, but it also makes me wonder whether degeneration can really progress that quickly in just one month (or maybe this is something other than degeneration they’re seeing and dismissing). To look at the two reports you’d think you were looking at two different patients.

The thoracic spine scan says “bulging discs  noted @ L1-L2 w/compression of disc sac”.

Seems to me that with all those spinal findings and the TMJ it shouldn’t be hard to deduce that I have Dystonia. We’ll see whether this neurologist tomorrow figures it out. If she knows anything about Dystonia it should be evident to her. If not, then most likely she is not the right doctor for me.

As for the Dysautonomia it will be a miracle if she’s versed in that, as most general neurologists’ knowledge is limited to classic POTS at the very most.

I’m still looking for a silver lining in all of this but it’s getting hard to find one. I can only hope that some benevolent force greater than myself is watching over me tomorrow.