Hanging Onto Dignity in the Face of Chronic Illness

Dream Cloud Stud Earrings - very nice on blue DSC_0001

Today I am struggling with something I can’t define. I want to make jewelry but it seems that this has gradually been slipping away from me ever so slowly that I hardly even noticed that it’s been since Summer that I’ve done any metalwork. Something with my fine motor abilities wasn’t quite right even back then but I couldn’t quite put my finger on what was wrong. These earrings were ones I hand sawed out of sheet sterling silver for a technician in the Sleep lab who had been especially kind to me. I wanted to thank her and give her this gift because I had the sense even back then that I didn’t know how much longer I’d be around.

A person knows these things through some sort of internal clock and the mind prepares even when the exact source of the decline remains elusive.

I remember clearly how difficult it was to make this simple pair of earrings and thinking it shouldn’t be so hard and shouldn’t have taken me as long as it did. I’ve been making jewelry for years. I know how, or so I thought. It was something I’ve been classically trained in and I have a certificate from jeweler’s school to show for it, yet this has been slipping away from me insidiously, not with a bang but with a whimper over a period of the past 7 months or so.

Up until now I mainly just thought it was fatigue (both muscle and systemic) that prevented me from making new pieces but now I think it may be even more than that. My activities of daily living are being increasingly impacted.

Something happened this morning when I went to the kitchen to make myself a simple cheese omelet that made me think about this again. I was dropping eggs on the floor and freaking out and becoming really primal unexpectedly and every bump or loud sound sent me into a frenzy, and cleaning up the slimy mess was further triggering. Absolutely any stimuli was severely aversive to me and I couldn’t stand anything. I tried to push on to make my breakfast and found that for all practical purposes I’d forgotten how to cook the egg in such a way so that it wasn’t translucent and lumpy and sticking to the bottom of the frying pan.

I could not figure out why I couldn’t do this, but oddly I’ve been gradually developing difficulties in doing this over time, but today it was worse and I felt it was not edible and by that time I’d kind of lost my appetite anyhow, so I gave it to the dog whom I knew would enjoy it and whose stomach could tolerate it even if undercooked in parts. I didn’t want it to go to waste. The realization that I really can’t do this anymore was awful and terrifying and later it also caused me to go back over the events of the past few months for some clues as to what’s happening to me.

This brought me to another scary window into the progression of this disease and what others are noticing different about me but aren’t fully telling me. I know the doctors are watching me very carefully (while at the same time discounting me) and they may still be misinterpreting this as “emotional” or some sort of psych thing, but then again I still think I haven’t been fully told all that they have charted and possibly discussed amongst themselves and there may be some differentials they’re considering and haven’t shared with me, maybe because of the sensitive nature of those possibilities, diagnoses which have a far worse prognosis than any emotional or psych thing.

After my freakout this morning I tried again putting 2 and 2 together and the overarching theme is irrelevancy. I had to reverse-engineer this to get a clearer picture. In a number of interactions I’ve had lately with these doctors it has felt as though they’re not relating to me but looking past me almost. At first I thought maybe it was just the classic reaction like you see in the movies; the way people behave when they think you’ve gone insane (such as in a mental illness), but upon closer inspection I’m not sure that’s quite it, at least in the instance of Dr. B. and Dr. V. It seems more as though they’re thinking this is organic but manifesting itself in certain cognitive ways.

Trying to look at this logically piece by piece  I came to wonder several things;

1) Why does a doctor stop communicating with you and stop reciprocating?

A) They decide they no longer like you, that you’re a pain in the ass, therefore not worth their time and energy; they’ve lost interest and motivation to help you anymore.

B) They are overworked, sick, or gong through emotional problems of their own and it just gets taken out on you.

C) They feel that you have something so profoundly wrong with your cognitive processes that nothing you say is valid or relevant at this point.

The next question I pondered was;

2) Under which circumstances do doctors force things onto a patient (such as the neuro exam Dr. V. did after I’d asked her not to)?

A) They’re just insensitive as a general rule

B) The patient is a child and legally unable to give nor withhold consent.

C) The patient is thought by the doctor to be unable to give or withhold consent because of poor judgment and perception due to some cognitive impairment so severe it renders them unable to make their own decisions (even if not deemed legally mentally incompetent in a court of law).

Generally Option C of both questions indicates that the doctor believes the patient either to be psychotic or demented.

Even if a patient were either of these things I don’t think it’s proper to strip them of their dignity by rendering them irrelevant and treating them as a non-entity.

I’ve had extensive training (even before becoming certified as a jewelry artist) in patient advocacy and I know that this is not a respectful and dignified way to interact with patients, and that physical force is a violation of that person’s human rights (even in the case of what I would call a boundaries violation that was not malicious or overly rough as Dr. M’s exam had been) although it is insensitive.

A patient nevertheless should still have the right to say no to something that is done to their body, as they retain ownership of their own body regardless of diagnosis (or suspected diagnosis).

Dr. B. as my primary care physician seeing I’m in a vulnerable state should have told Dr. V. not to force things anymore and to always ask first before doing anything physically to me so as not to traumatize me further. If I do not feel safe and don’t feel comfortable at any stage of an exam and told her no, then no has to be respected. If she feels so strongly that something needs to be done it is incumbent upon her to gain my trust and put me at ease and not to force the issue until I am ready to go ahead with something. I don’t give a damn how long that takes. It is just the ethical way to treat a person. In addition things should not be kept from me.

Pontificating behind a patient’s back without including them in the discussion is a guaranteed way to make damn sure they will never trust you again!

Whatever she or Dr. B. think is going on with me I am well cognizant enough to know when I’m being violated and that in itself shows that taking away my autonomy in such ways has the capacity to do more harm than good to my psyche as well as the hard-wiring of my  brain. If I should become further impaired in the future, my limbic system will retain this information on a visceral level and it will be that much harder for me to trust them when even more necessary things may need doing down the road.

They need to think of the long-term, and if they don’t treat me respectfully now, then I will not feel safe enough later to accept anything they might propose in the way of testing and treatment if I come to a point at which I can’t process much and am left with predominantly reptilian brain functions.

I am still awaiting this other independent evaluation to elucidate the other piece of this puzzle, the part I became acutely aware of while at Piedmont, but still have not heard back from the woman as to whether she’s filed her papers to become a Medicare provider. I hope she follows through because it will be a very important piece of information and I need proof since Dr. B. would probably not believe me right now if I told him that part of what’s going on, and it’s possible other doctors might not either.

I present well and to some extent that works to my disadvantage because often those in the medical field don’t take me seriously when I tell them how hard it is for me to do certain things and ask for certain types of help.

Just how do people with such a condition gone undiagnosed since childhood manage aging?  Are they more prone to developing certain neurodegenerative diseases than the general population? Most likely there haven’t been enough studies to know yet. This is something that has long been thought to go away once a person reached adulthood, but there are increasing numbers of people who bear out that it does not, and there really are no services in place to serve this population (or only a handful in more progressive states).

Because I’ve never really had the level of help I need I got into the habit of doing things myself from an early age even when I fell flat on my face and failed miserably over and over and over again. I never felt secure that anyone had my back, and felt if I didn’t do it, it wouldn’t get done. Often I was correct.  When I didn’t meet external expectations people accused me of not trying hard enough, yet I was trying so hard I was literally burning myself out. They have no idea! I had nowhere to go and nobody to tell because they just didn’t see it, as I looked fine on the outside, articulate and intelligent so in their mind “what’s the problem? You must be overthinking it.” The sad truth is that I wasn’t overreacting and my requests no matter how clear and logically presented only sat there, unmet. For years I suffered in silence and just coped the best I could.

Things have fallen through the cracks for so long I am in a constant state of vigilance with an almost OCD quality to it to make sure that I don’t end up up a creek without a paddle because there is no spouse, no family member, and no friend there who comes to visit and help me in my home throughout the week and make sure that food won’t run out, and that meals are fixed, able to bathe, and that somebody vaccuums the dog hair off my carpet regularly, etc. Someone went grocery shopping for me just a few times and came back with things on my list missing, low-fat when I specified full milk, one of something when I’d specified 3, 3 granny smith apples and 1 red apple when I’d specified 12 granny smith apples, the goat cheese not included in the bag to eat with said apples and crackers, etc. and even then it was not a permanent arrangement.

Because of this lack of enough of and the right help sometimes things just don’t get done. Maybe in previous years I’ve barely managed to get by but this is working less and less nowadays and I really need a personal assistant as soon as possible. This is becoming a crisis.

In the interim I called an agency today that provides some help through Medicaid but the woman on the phone was not very positive in the way she presented how it works, and I was fighting to make my way out of a paper bag to process the muddled mess of what she was telling me. I have really had about as much frustration as I can handle and being expected to do more on my own than I realistically can.

This woman set about telling me “You just can’s sign up. You have to be qualified for Medicaid”. I told her I have Medicaid. She said a few more negative statements that sounded more like she was trying to prevent my receiving her services than she was trying to help me, and I got royally irritated. It turned out all she had to do was ask me some information and present it to Medicaid, and I told her she should just have asked me those questions in the first place rather than making it so difficult. She finally admitted she didn’t even know what criteria Medicaid uses to approve people. That’s odd. If I were in that line of work I would make it my business to find out the criteria! She told me it would take a few hours to a few days to get an answer, and we got off the phone. This is the kind of obstructive crap I deal with day in and day out, and I’m becoming less and less able to do it.

I’m still waiting to hear back from the social work department at Shepherd Center so that hopefully I can get some of this taken off my shoulders. It’s really too much.

All the support services I told Dr. B. I needed are becoming increasingly time-sensitive now;

* A doctor for direct admission in the event I need to be hospitalized (so I don’t have to go to the ER and risk being further abused and neglected).

* A Personal Assistant

* Recert for Home Healthcare

* The Dysautonomia treated in my home with IV Saline

* Advocacy

* Help with Paperwork

* Vascular, Autonomic, and Genetic Testing (to find out what’s wrong ASAP since they got on it too slowly in the first place and now I am really struggling to function).

Daria, the Care Coordinator with the home healthcare agency I’m trying to get recertified with was out all day and I need to know if my GP did anything about recertification because if not I’ll have to get my pulmonologist to do it instead.

Only today was the TMJ MRI properly submitted to Radiology, and I had a total of 5 appointments to book transportation for (1 of which they couldn’t book because the zip code did not bring up the address I’d given them). Calling the facility I learned that it was correct, but the Supervisor never did call me back from the transportation broker system in order to straighten this out. I will have to pick up where I left off again tomorrow and hope they will schedule the trip, as all trips to medical appointments require giving 3 days notice.

If you have not had to do these kinds of things don’t ever believe the misconception you hear from people that this kind of life is easy. It’s a subsistence, at best, and you spend more time and energy just trying to survive on top of the challenges of your medical condition than its worth, so those stories about “fraud, waste, and abuse” are total hogwash.

To have to fight every step of the way just to get the bare minimum of what you need is not my idea of living, and then to be treated by providers as though you’re irrelevant or that you’re asking too much takes away our dignity further. Sooner or later all of them will be where we patients are now. God forbid that they are SOL when that time comes that they need this help for themselves and are at the mercy of people who feel it’s simply not their job or their concern.

Beware of False Allies

Velvet - sneaky hiding snake DSC_0007

I’m sure you’ve heard the phrase “beware of false idols”. Well same could be said of those people in your “inner circle”; those in your support system.

As chronically ill people we are often too tired, depleted, and focused on obtaining the practical help and services we need to feel better and to get better to clearly discern whether those in our support system are truly supportive and whether they are helping or in fact hindering or hurting us.

We may in our quest to feel better not see (or ignore) signs that others who seem to want to help in reality have agendas that run counter to what we want for our lives, and their attitudes and biases might even throw a monkey-wrench into our goals and plans.

When that person is a doctor or other medical professional, while such people may have been helpful initially there may come a time when they cease to be or when their true colors come out and show you who they really are versus who you thought they were at a very crucial time in your life.

Be kind to yourself: Sometimes for various reasons you may not recognize when someone in your inner circle is hurting rather than helping you, not respecting your wishes and boundaries, or otherwise acting in ways that end up detracting rather than adding to your health, well-being, and happiness.

You may start to see (or feel) that something isn’t quite right but brush this off as paranoia, telling yourself not to look a gift horse in the mouth, and you might find yourself hanging onto people longer than you should because you’re afraid you may be going from the frying pan to the fire.

A false ally can violate your trust, jerk you around emotionally, and leave you confused between what your heart versus your head tells you. At best they can be ineffectual and unhelpful, but at worst, a snake-in-the-grass who has the capacity to sabotage your health and your life. If this person is a doctor or other health professional and their actions are significantly hurting your life you may want to report them to their supervisor, the head of the department or facility, and in some cases, the medical licensing board. You might also decide to report them to the Better Business Bureau.

Impaired professionals are sometimes very toxic people and not fit to practice due to their own personal biases and problems and are unwilling to voluntarily work on them. In such cases repeated attempts to work things out with such a person are unsuccessful and continuing the relationship becomes untenable and anti-therapeutic.

Each person has to use their own judgment as to what to do when they begin to see signs that interactions with these helpers are not going well and put the necessary replacement infrastructure in place, but if the situation becomes so injurious that these people are doing more harm than if you had nobody fulfilling those duties/needs you may need to cut them out of your life for your own health and sanity even before you have better supports in place, then look for those afterwards.

Here are some distinctions between true allies versus false allies

True Ally Versus False Ally

  • True ally: you feel empowered and supports your confidence in making your own decisions. You feel happy, relaxed, inspired, comforted, and hopeful for the future.

  • False ally: you feel deflated and/or defeated, powerless, intimidated, and/or irritated after speaking with them and begin to doubt your own perceptions, feelings, and decisions. 

  • True ally: you feel secure in the fact that they’re there for you and will be for the duration.

  • False Ally: you have the growing feeling that their support could end with little or no warning or provocation, and it begins to feel conditional, they become increasingly unreliable, passive-aggressive (what I refer to as “weasel meanness”); they “forget” to do tasks they promised, do them very slowly, need repeated reminders, or don’t keep their word, let important tasks like writing orders fall through the cracks, and leave you in a jam.

  • True Ally: Communication is two-sided and the person gives you confirmation that they agree and are supportive of your game plan, is happy for you (and may even offer to help unsolicited).

  • False Ally: What they say to you directly doesn’t seem to add up with what others hear from them about the same interactions with you, or you find evidence that they didn’t do what they said they’d do to help or support you.

  • True Ally: Their written and verbal communication seems warm and open, they smile, make eye contact, and answer questions fully and directly, seem interested in what you have to say, and respect your wishes. They point out and focus on your strengths and assets and seem happy to see or hear from you.

  • False Ally: Their written and verbal communication is evasive, stilted, legalistic, guarded, incomplete, needs repeated clarification, and communication with them seems inordinately hard even after repeated attempts. They don’t remember important facts, and seem uninterested or irritated by your requests/questions, and/or body language seems inconsistent with what they say verbally; i.e. they like you and want to help yet roll their eyes, cut you off when you talk, or under-react to, gloss over, or minimize the importance of your pain (physical or emotional).

  • True Ally: Willing to go to bat for you, recommend you, stick their neck out, defends you against attacks, takes steps to keep you safe, unequivocally “on your side”.

  • False Ally: Seems luke-warm or lack-luster in their endorsements of you to others, unwilling to stand up for you, conveys they believe others over you when you’ve been wronged or says directly they don’t believe you, questions your credibility directly or indirectly.

  • True Ally: Understands and appreciates you more over time, positive interactions increase, thoughtful and seeks to make thing easier for you given your individual circumstances, makes statements that convey that they care and feel warmly about you.

  • False Ally: Appears tired of you, less empathetic, seems uninterested and even annoyed about your individual needs, unwilling to put much time in, seems under-concerned about your condition and does nothing to reduce your work-load and stress level, and makes insensitive or sarcastic remarks referencing you in a bad light, takes an outright oppositional stance to helping with things in ways you request, even walks out of a room while you’re still talking.



Emory; Slow As Molasses; Treatment Still Stalled

Mollasses coming out of bottle - showing level inside bottle DSC_0004

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.



The Dark Man

Shadow silhouette of a figure

Upon returning home on the evening of November 28th I was greeted by the strong stench of dog feces and urine coming from the kitchen. I had been under the impression that my son’s girlfriend’s father had been keeping Carmella, my dog, in Athens at a local dog spa and that she was being well cared for. I found her with a small dish of cheap dogfood  and what seemed to be a week’s worth of mess underneath the kitchen table. Near the garage door and laundry room was some bloody diarrhea that was nearly liquid.

Cleaning all this up while sitting in my wheelchair proved nearly impossible but I couldn’t just leave it there, so I did my best to stand and in doing so fell, almost landing in a puddle of urine. The smell was overpowering even after my best effort at cleaning, as the linoleum is porous unlike the type they used to make and absorbs like a sponge.

I was relieved to be home in my own bed, but the silence was deafening after the steady hum of conversation in the hallway at the hospital.

Sleeping was fitful and unrestorative between the residual odor emanating from the kitchen and my autonomic instability. 

Wires got crossed and home health didn’t show up until sometime later the following week, as apparently they had not been notified by the hospital that I’d been discharged.

By Thursday, December 3rd I was in a bad way. The night had been one of the worst since I’d been discharged from Piedmont and I called the home health agency as soon as they were open to ask that they send a nurse out, as I was feeling really faint along with nausea and the feeling that I was going to lose all bowel control at any moment. The Care Coordinator, Daria wasn’t in and somebody else was working that day in her place, and I was told they couldn’t get a nurse to my house on such short notice. The best this woman could advise me to do was to go to the Emergency room. I really didn’t want to but  didn’t know what else to do. The feeling was becoming intolerable and the woman on the other end of the phone was telling me I really should never have been discharged.

Reluctantly I dialed 911. Not long after, a black man and woman arrived. I was too ill even to get into my wheelchair so yelled for them to come in my back door. They finally heard me and entered the house that way.

I told them to take me to Emory since that was where my doctors worked, and I figured maybe I would give the place another chance even though their clinics had taken way too long to get me routed to the right care. I recounted how things had been moving at a snail’s pace, how surreal things had become on the Patient Portal with several doctors watching intently but none making a move to intervene, and how my GP had seemed at a loss, resorting to prayer now and saying very little.

The female paramedic seemed perplexed. “After that you want to go to Emory?”

“Yes, and don’t divert no matter what. Please hurry. I’m not feeling well at all” I responded.

 I’d tried going to another hospital and they’d spat me back to Emory anyway, so I thought maybe it was best that I have them follow through. At least my doctors were there and the ER could let them know where I was. Maybe, I thought, this nightmare was finally coming to an end. Little did I know, things were about to get alot worse.

The male paramedic began proselytizing about Jesus Christ and asking if and how I were “saved”, very inappropriate, but nevertheless I told him that given nothing else was working I’d tried that too and that wasn’t anymore effective than anything else. He went on about how you had to ask forgiveness and pray this way or that way in order to “be healed”. I thought this really must be hell I was in as the female was driving as though it were a Sunday and stopping at each light. It seemed as though I’d stumbled onto an alternate reality, or down some strange rabbit hole. I could hardly believe this was happening. I felt as though I were going to hurl and crap my pants all at the same time as the two paramedics immersed in their own world talked about eating pizza.

After what felt like ages we arrived at Emory’s ER. They took their time getting the gurney out of the back of the truck and wheeled me into the entrance.

After signing some paperwork and having blood drawn through what felt like a dull shovel crammed into my arm (an IV) by a middle-aged black woman with shoulder-length hair began making conversation with me. Other than the painful IV she was pleasant and made some small-talk noticing I had a birthday coming up and asked what I wished for,

“A new body” I half-way joked.

“Be careful what you wish for”, she replied cryptically. 

I quietly wondered why everything had to be assumed for the worst rather than for better.

Soon after she left, Dr. L.H. entered the room followed by a group of others. She was young with dark brown hair parted in the middle and an engaging personality. As the others milled around she positioned herself by the foot of my bed on the left side and asked what had been happening that brought me to the hospital. I struggled at first to get out the words but then they just sort of poured out of me, all the symptoms that had developed, how they accelerated recently, and how Emory seemed to be asleep at the wheel as I got more and more disabled until I could hardly care for myself anymore. 

“I’m so sorry” she replied. “We’re going to take care of you. I promise. We’re going to make this right. If there’s anything you need, food, water, or anything, just ask.” Her expression looked sincere, so I believed her.

I asked to speak with the social worker but she wouldn’t be in until around 10:00 AM. The woman filling in at the home healthcare agency had told me to have their social worker call them so she could advocate for me. Someone had put my handbag out of reach, I don’t remember when, but I couldn’t get to my laptop or a phone to call anyone, and I was so tired and agonized by the lower GI symptoms I was experiencing it was hard to process all that was going on. I needed to believe things were going to work out finally. They had to. I didn’t know how much longer I could take it.

It was nearly 2:00 PM before I was able to get the social worker and I asked for some food and medication for spasticity. She went to ask on my behalf and after she left it was quite awhile before a young, slim black nurse walked in with a pill in a small cup. I asked if it was Tizanidine and she told me no, (giving me a generic name I did not recognize), then when asked told me that it was some sort of Benzodiazipine. I gave her a  strange look and said I didn’t think that was an appropriate drug for my symptoms. She finally admitted it was Valium and I said, “No that that wasn’t going to address spasticity in my colon nor the spasticity I was having in the left instep of my foot. 

She told me that I couldn’t get an antispasmodic because those were “neurological medications” and had to be authorized by a neurologist. I wasn’t buying it. Never had I had such an experience in any ER in my life and I had an inkling something strange was going on although I didn’t yet know quite what. I asked to speak with the patient representative and she instead got the social worker again, who while she was understanding and admitted that I wasn’t being treated correctly, seemed to feel that her hands were tied, and eventually trailed off in frustration.

The young nurse returned with the Valium and insisted it would address the spasticity as it had muscle relaxant properties. Too tired to put up much of a fight I took it as it was all that was available at the moment. It didn’t help and I was so miserable with the constant fecal urgency that I felt like crying but my eyes were dry and I couldn’t shed a tear. An almost primal wail came out of me for hours until I fell asleep in utter exhaustion. No food came even after I called the nurse several times. She came in and asked whether the Valium helped and I told her no, that all it had done was put me to sleep but the spasticity remained. I asked again for an antispasmodic. Again she refused. Putting her hand defiantly on one hip she waggled her head and shoulder to try to defend her position, stating that although it might have put me to sleep it was not for sleep and that it does address spasticity. I told her that if that were so that only would it do so indirectly and that there are better medications for that; Tizanidine or Baclofen.

She left the room in a huff rolling her eyes and didn’t return for some time. No food was forthcoming but after ringing the buzzer about 3 times over a period of an hour or so more I finally got some water from another nurse or aid.

Sometime in the late afternoon a female resident, E.G., came to my bedside. She had a very pale face with dark circles and deep set eyes, almost  cadaver-like in appearance. At first she seemed cheerful as she told me she was doing her neurology rotation and somehow we got on the subject of my son (I can’t remember how), but I told her he had a D-Net tumor. She didn’t know what that was so I explained it was a benign clump of excess neural tissue that caused daily seizures, and said she would eventually learn that if she was planning on going into neurology. Then she took out her tools and decided she was going to do a neuro exam on me. This was where things started getting a little weird. At the time I really  didn’t know what to make of it but she started testing my reflexes in the right arm saying “You know the drill, you know the drill”, in an almost cursory yet condescending way. I remember thinking I wish they’d leave me alone already and practice on somebody else so I could go to sleep.

Then almost immediately after she was through doing that, in came a male attending ER doctor, T.T.J., MD (internal medicine) a stocky man with wavy brown hair tied back in a small poneytail who did his own neuro exam. He was glib and dismissive and seemed quite pleased with himself and couldn’t seem to understand why my not being able to bathe myself and care for myself would be bothersome to me, writing off my concern as “anxiety”, and attributing my chronic long-term constipation to the Tramadol although I’ve had it alot longer than I’ve been on the medication. I told him directly that I wouldn’t be minimizing this if I were him.

After he’d left the room I spoke with the social worker again, telling her I didn’t feel that this guy was being respectful and asked her to speak with my home healthcare agency. Again I asked for something to eat. She said she’d pass it on. I told her that with all that was going on and all I’d been through I didn’t know who to trust anymore. She told me I could trust Dr. H.

Finally Dr. H. came back in and told me I was going to be admitted at least overnight to their bridge unit, and that a female neurologist was going to be assigned to me. As she leaned her elbows on the bars of the gurney she said “We do care about you.” I could believe that she did but the royal “We?”, not so much. I was a long way from feeling reassured. Fighting through the pain and fatigue I was trying to make sense of it all.

After she left the room I waited for the female neurologist she spoke of to arrive but she never did. To this day I do not know why.

When Dr. H. came back she told me there’d been a change of plans and that there was going to be a different neurologist seeing me instead, a male whom she described as “an old traditionalist”. Just then a precarious feeling came over me. That didn’t sound like a good thing. I asked her if he had a problem with a strong woman and she told me no, that she was a strong woman.

Soon a transporter came with a wheelchair to take me to the unit. Once I was assigned to a room a nurse came in and took my vital signs. My blood pressure was somewhat high. I asked her to help me plug in my laptop so that I could notify some people as to what was happening. Once she left I found I was unable to connect to the network.

Around 6 or 7 PM, the neurologist Dr. P.R.M entered my room at Emory Hospital wearing a surgical mask (which I thought was bizarre anyway), accompanied by the same female resident who had seen me earlier.

Instantly I had a visceral feeling of dread. He looked tightly wound, with a mostly bald but oddly muscular head. Clenching his jaw seemed to isolate one muscle in his head at a time tensing and releasing in a strange pattern. He reminded me of a snorting angry bull on a hair trigger pawing at the dirt. He neither smiled nor attempted any niceties in his introduction.

Almost immediately he asked me rhetorically if I would turn off my laptop, and then actually reached over and closed it himself before turning off the overhead light and looking closely into my eyes with his pen light.

Dr. H. came into the room to the right of my bed. Dr. M. asked me some pointed questions about what I understood about why I was there, and asked me my symptoms. I replied that I had been in the process of work-up for a neuromuscular disease, possibly ALS or some sort of movement disorder and told him I had progressive weakness, fasciculations, myoclonus, spasticity, extreme fatigue, and had fallen a number of times back in August, and had been declining more quickly over the past month or so. That day and for the past few weeks I’d been having dysautonomic symptoms; i.e., nausea, faintness, hot and cold temperature dysregulation, gastric upset and constant spasm in my lower GI tract that felt like I had to poop urgently all day long. I explained that I had also had sharp muscle spasms in the instep of my left foot earlier in the day.

 When I used the proper names for my symptoms he made a rather pointed comment; “You know a lot of medical terms.” His tone sounded almost accusatory as though that threatened him in some way. I told him that there’s a whole new generation of patients out there who are highly educated and proactive, and that I was raised around science, as my father was a cell biologist, and since I tire easily I’d rather use 1 word to describe 4 or 5 as long as he and I both understand what it means. I explained that I do what I can to conserve my energy.

 Then he physically abused me under the guise of a neuro exam (started off pretty rough but on the border) testing my reflexes on some areas of the legs and then on my right arm, but when he got to the left arm he lifted his triangular rubber hammer above his head and taking full swings beat me with all his might several times quickly. When I cringed and yelled “Ouch!” he did not apologize. I have had neuro exams many times before and never in my life had I been hit this hard by any doctor; neurologist or otherwise. There was no clinical reason for that amount of force. It was obvious that he intended to intimidate me and inflict pain in such a way that it would not leave a bruise, in the pretense of doing his job.

 He had access to sensitive medical history information in my chart from a recent hospitalization at Piedmont hospital where I had been having tests and being worked up for ALS, admitted he’d read the whole thing, then lied to me that my EMG was completely clean when in fact it wasn’t, there were some findings not yet elucidated, and then proceeded to use other personal history information against me from the other hospital’s record about abuse I suffered as a child in a malicious way. He said “You had a mental health consult there, didn’t you. What did she tell you?” he again poked in a distinctly interrogative tone.

(I had merely spoken with a counselor about grief I was having about the loss of my function in the past few months). His motive was clearly to discredit the neuromuscular symptoms I’ve been having which have progressed to the level that I need help at home with daily living.  I was in shock and disbelief that a total stranger would come into my hospital room so hell-bent to attack me this way, especially a doctor who was supposed to be there to help me, and I couldn’t understand why all the vehemence. I told him briefly that the counselor had told me that she didn’t feel I had a psychiatric problem and agreed with me that it was entirely situational, and said that it was understandable that I was overwhelmed considering what was happening to my body. (I understand they cannot bill for grief so have to put something diagnostic down). Dr. M. used this in a malicious way to try to discredit my whole disease process that was currently being worked up, and these were just gross tests, just the beginning of the diagnostic process.

 His “professional opinion” (even after I had Babinski sign in both feet taken lying down and also with legs hanging over the side of the bed) was that I had “hysterical conversion disorder” and he told me that he had been “called in” (I don’t know by whom) for his “opinion” and therefore had to chart something about it.

 I told him I don’t know how he could jump to such a conclusion and that he better think long and hard about that because this could bias other doctors and result in me not getting the real treatment that could help my disease whatever it is. I said just because that was his opinion didn’t make it true and that a specialist might find the cause of my symptoms and I did not want him to poison the well with this biased opinion.

 I told him that there were well documented problems that indicated something neurologically wrong in the CNS such as Biot’s breathing, (similar to Cheynes-Stokes), and that my sleep studies were very abnormal (slow waves while awake, sleep myoclonus, etc.), and that many times I am awakened by fasciculations in my toes, and how on earth could my mind conjure up that when I was not even awake at the onset. He paused for a moment unable to counter that argument.

 It was quite clear by then he had his own agenda and did not have my best interest at heart, and what he did violates the Hippocratic Oath on a number of levels. He got defensive when I stood up for myself and told me, “Ms. Carlington, if you don’t want to discuss it there is no point continuing the conversation”. I reminded him once more that I did not want even a hint of this in my records. I told him that if he wanted to put in that he didn’t find anything that was one thing, but to enter such conjecture as he was proposing would be irresponsible. Pretty much everyone in the medical field knows what a stigma such a diagnosis holds and how damaging it can be to one’s credibility. When he shook my hand toward the end of the conversation it was a “dead fish” handshake and there was not an ounce of empathy in his demeanor.  I told him “I don’t mean to offend you” but no thanks. This was not helpful.

 He said there were no other tests he could think of to do and said that the neuromuscular specialist, Dr. G. didn’t come to the hospital, so I might as well be discharged, and said he’d refer me to him if I wanted. I said why not call in other specialists in the meantime and he asked me what specialists could be called in. I was exhausted and had been in the ER since morning with nothing to eat all day and no medication but a Valium to treat my spasticity so needless to say it didn’t occur to me to ask about a gastroenterology consult, but that shouldn’t have been incumbent upon me to initiate.

 Just a few minutes later, he sent his female resident, E.G. into my room, upon which she plopped her butt down squarely on my left foot covered by my blankets which was the one with the most weakness and dysfunction in it. The toes were pointing up, so that could have broken some bones if the muscles hadn’t been as weak as they are at the point between the foot and ankle and it flattened down. Again I yelled “Ouch!” as I do have sensation in it, so of course it hurt. She apologized as though it were an accident. There was a chair on the other side of my bed she could have sat in instead. It was not necessary to sit at the foot of my bed. This is a little known trick to see if you’re “faking it” but is considered highly unethical. This is NOT what residents are supposed to be taught as acceptable practice and places patients at risk of injury.

She made a few statements that I didn’t process because of the state of shock I was in. All I could think to do was to ask her to get Dr. H., but once she’d left the room and Dr. H. came back in I couldn’t bring myself to tell her what the resident had done because even though I felt as though we might even have been friends if we’d met under different circumstances the events of the day had happened on her watch and she hadn’t intervened, so as much as I wanted to I didn’t even know whether I could trust her 100%.

She sat in the chair opposite me, and looking back at her my eyes welled up with tears that wouldn’t fall. I was so tired, so existentially tired. I told her this made me sad, that this experience had seriously damaged my trust in Emory and in doctors, that I thought she was going to make it right, not make it worse. I told her that he was wrong and that I had nothing at all to gain, but everything to lose, that I had lost the one thing I valued most in myself all my life; my physical strength.

She told me that she believed me and saw me as an honest person of integrity, and that I should continue to pursue the source of these symptoms.

I told her that it was so unfair for him to imply that a patient was either faking or nuts just because he didn’t know the answer and I recounted the true story of a woman with chronic Lyme disease whose family wouldn’t believe her and was too poor to get treatment from the right specialists, that she’d begged for someone to help her get the treatment she needed. It never came, and the day after posting a video about her plight she walked in front of a train and committed suicide, and that I’d spoken with one of my doctors about what I wanted to be done if my suffering were to become unbearable with no relief in sight.

She responded that if I ever got to that point to come back to the ER.

“But then I’d have a record”. And anyway, why would I do that if I’d reached such a point that I wanted out? Just to be forced to endure that suffering longer? No, I thought. If I ever get to that point I will make the final decision with dignity. What I’d just endured was not dignity but humiliation and degradation. The whole point of Euthanasia is to end the suffering, not to prolong it.

Yes, that’s true,” she answered, knowing that my having a “mental health” record was what he wanted and I would never give him the satisfaction.

 I have an advocacy background (also documented in those records he used against me), so I’m able to recognize the signs of abuse and/or neglect when I encounter them, and what happened that day was highly unethical and out-and-out abusive.

When dinner finally came that night I couldn’t eat.

I had to call out to get the nurse because M had moved the call button to the countertop where I couldn’t reach it. The nurse came in and found it, shaking her head asking how it got over there.

“It was that damned neurologist”, I answered.

As I was given my discharge papers she started to hand me another Valium. I waved it away telling her I tried it earlier in the day and it didn’t help. Then she was going to hand me a prescription and I told her to keep it, as it was pointless. I would just take my Tizanidine when I got home later. I’m not sure why she was so intent on giving it to me; because she believed his take on things, or whether she thought after dealing with him and his abuse I was going to need a tranquilizer. Either way, I felt I was on plenty of medication already and didn’t need one more. Besides, there was no need to add to the stigma he was trying to make stick.

 This sadistic man is not only a danger to me physically and to my relationships with other doctors on whom my life may depend, but also a danger to other patients as well.

 When I obtained the ER record of his documentation almost a week later it was even worse than he had implied. This went way beyond rudeness or mere difference of opinion, but rose (or should I say sank) to the level of harassment and sabotage. He went way beyond the scope of his specialty and peppered it with psychiatric terms he had no business using that were the most stigmatizing mental health diagnoses he could think of, knowing that Emory doesn’t remove inaccurate, even libelous information but only puts a notation by it stating it’s incorrect. I will be utilizing their form for this, but, as his defamatory narrative will still be visible, and could bias other doctors, in perpetuity, this cannot be allowed to stand.

 In addition, he went so far as to question in the report the diagnostic process used by my other doctors who had diagnosed Sleep Myoclonus and Sarcoidosis and he implied it was all fake.

 He did nothing that would be beneficial to me as a patient, and his involvement was clearly designed to blacklist me from every doctor but those he had connections with in an attempt to manipulate me into confirming his “assessment”. He had gone too far by beating me under the guise of his “neuro exam” even though he’d admitted that he’d already formed his opinion prior to that based on the records from Piedmont hospital, and realized that I was not the easy victim he thought, so he tried to cover his behind by doing all that libelous charting as he exited.

 I have filed the various complaints that I’ve been advised to file given the types of improprieties that happened, one of them a police report with Dekalb County, GA.

 As long as he has full privileges at Emory he can tamper with my treatment, he knows where I live, and could possibly also endanger my son and his treatment whom is waiting for surgery for a D-Net tumor. That electronic records system states every appointment within the system I have scheduled, its time, and location, so I am in danger of further harassment and tampering with my treatment by him. He has shown his intentions to try to do that in that ER report.

 This rogue neurologist should have his license permanently revoked as he has clearly shown malicious intent toward a patient, (at least towards me, and maybe others), he abused his position and power differential in order to physically assault me in the process of his “work”, and followed that up by essentially attempting to blacklist me with other doctors now and in the future, something that may have life-long ramifications and fundamentally hurt or destroy healthy and beneficial doctor/patient relationships. If he would do this to me then it is reasonable to suspect he would place other patients at great risk in this way.

Who exactly is this dark man, and who sent him?

To what extent did he influence (and possibly orchestrate) the way I was treated in the ER earlier in the day?

As of yet these questions remain unanswered.