It was no big surprise when I received the long, white envelope with the Georgia Composite Medical Board logo on it that the outcome was a bust. Georgia’s track record for disciplining doctors for infractions is especially bad compared to the national average. The only hint at a smidgeon of humanity was two successive correspondences to justify why they were taking no action. I’d written a response and then received the following back;  

From: Hawthorne, Reginald

Sent: Friday, November 18, 2016 9:53 AM

To: Pippit Carlington

Subject: RE: Phone Not Working; Need To Speak To a Live Person Regarding Grievance

Hello Pippit Carlington,

     Re: Emory University Hospital

This letter is in response to your correspondence of November 14, 2016, regarding the disposition of your complaint against the above named facility.  The Board has received and reviewed the additional information concerning your case. 

Your complaint was thoroughly investigated. After careful review of the information, the Board concluded that there was no jurisdiction. The issues raised in your complaint cannot be addressed by the Board because the Board only has jurisdiction over physicians, physician’s assistants, respiratory care professionals, perfusionists, acupuncturists, auricular detox specialists, orthotists and prosthetists.  We do not have jurisdiction over facilities and are unable to proceed further. You may refer your complaint to the Healthcare Facility Regulation Division. The contact number for this agency is (404) 657-5726.

The decision of the Board is final with no administrative appeals process.  You may seek the advice of counsel concerning other options available to you.  Please follow the link for a copy of the Medical Practice Act, Board Rules and the Administrative Procedure Act.

http://medicalboard.georgia.gov/rules-and-laws

Thank you for contacting the Board.

Reginald A. Hawthorne

Enforcement Specialist

Office of Investigations & Enforcement

Georgia Composite Medical Board

2 Peachtree Street NW, 36^th Floor

Atlanta, Georgia 30303

My response is as follows; 

And that was how my letter ended, firm in my position but not very hopeful that my words even made a dent in that thick head.

That brings me to my next topic; what’s happened to me recently. To tell you the truth I haven’t been doing well. It has become increasingly difficult to keep up with everything I need to do and for some reason my brain just isn’t working quite right and no matter how hard I try I just can’t seem to overcome it.

I think there are several reasons for this;

1) Whatever underlying neurological/autoimmune process is going on that I’m trying to get to the bottom of may be progressing.

2) I am most likely experiencing an Aspie Breakdown due to the adverse circumstances thrust upon me by Emory and all the disruption and insecurity this has caused in my life in the midst of my physical decline.

Some of Emory’s doctors, some staff, and definitely Administration turned against me at a time when I needed their support most. They didn’t actively work to find out what was wrong medically, prolonging my suffering, and failed to protect me when I first went to those I thought I could trust and confided in them that I knew something wasn’t right and that I needed their help even more than ever before to make sure that I would be safe and my medical needs addressed in a timely manner.

I tried to communicate this to several doctors numerous times. In the hostile corporate environment subjected to months of harassment and questions and looks of recrimination and mockery from my own doctors something inside me just cracked and I could no longer compensate the way I had been able in the past.

 I seek out joy wherever I can find it, but I would not be honest if I said this hasn’t left its mark upon me.

As much as proponents of CBT and the power of positive thinking would like to think we control how we react to things and control our own destiny, yada, yada…the truth is really most of us don’t know how truly little control we do have until we’re faced with something really major that we can’t correct; that not all the power in our body and mind combined could conquer.

Disease seems to have a mind of its own…and the disease of corporate corruption does as well. No chirpie meme nor therapy is going to fix this, as this is a major situational/sociological problem that calls for a sociological perspective and solution and it’s bigger than one person alone can solve.

In someone with Asperger’s/Autism things need to be taken care of right away; pain, GI problems, sensory overload, Dysautonomia, and other medical issues, in addition to thirst, hunger, and justice! We as a general rule are less able to tolerate protracted suffering than neurotypicals, and the lack of fairness issue is something we just cannot bear, especially a large injustice such as this. This is not a matter of being “high maintenence,” it’s just a neurological reality. It’s how we are wired.

I am usually very measured and don’t start to get blunt until nothing else has resolved the problem and I’m at my whit’s end, but as time went on I found it more and more difficult not to get irritated and upset as my voice and my needs were disregarded day in and day out like it had become Emory policy.

Like a woman who has been raped goes to the authorities and because of how they treat her like the perpetrator or as an “hysterical female” she is in effect raped again through the justice system, this is what essentially has happened to me (figuratively).

A number of regulatory agencies have passed the buck looking for an easy way out of having to take real action to right these wrongs, and at every turn it was like a knife in my heart. After so much of this complacency shown me I wanted to scream “What about this situation do you not understand! What about this is OK to you? Would you like your mother treated this way, or your wife, or your son or daughter? I think not!”

Back months ago when I told Dr. B. the day he terminated me it was he, not I who had changed over the years, I was telling the truth. I had not changed…not yet. Only after I was forsaken and thrown to the wolves by everyone in my support system and left to my agony, both physical and emotional, did my defenses really start breaking down and my Asperger’s really came to the forefront and become worse.

It wasn’t as simple as it seems from the outside to just walk out of Emory and in to a new doctor (or group of them) without skipping a beat. You have to realize that when I walked out of that last clinic my stumbling blocks were not over; the ramifications of the libel contained in my chart continued to haunt me and it didn’t matter whether I was even thinking about it at any given time or completely engrossed in something enjoyable. Those malicious words continued to work against me like long-acting venom long after I had left Emory’s marble halls. The coded language contained therein continued planting wicked little seeds of doubt all along the path laid out before me into the future.

Anyone the slightest bit perceptive would be able to see that is clearly what they’d intended, yet so many whose job it is to protect patients from such abuses of power seem completely oblivious, or at least they pretend to be. There was no well-meaning blunder about the placement of those words. They were placed strategically like guided missiles or dirty bombs concealed under the sand only to mar and inflict pain over and over again like shards of glass deeply embedded in several layers of skin.

I have my good days now and I still look for a silver lining and try to make lemonade from the lemons I stumble upon along the way because I love life and there’s so much more I want to do on this earth, but the truth is, overall, I’m declining. Over the past month or so my motor function in my hands has become worse and I find it increasingly difficult to do things like address an envelope. Even typing is harder than before. There’s a lag between when I start to do some functions with my hands that requires fine motor skills, and often the result turns out very sloppy. Figuring my bills and lots of other activities have fallen by the wayside because I my processing is hit and miss; as though my brain is skipping information every so often and then things just don’t get done.

I’ve been through several different cycles of Autonomic Dysfunction alternating every few weeks or a month. Several weeks of GI problems, then in-between that I have alot of nasal congestion which triggers more systemic pain, sometimes accompanied by shortness of breath.

When these health problems happen now I don’t honestly feel that there is anyone consistent I can go to for help and I have felt myself withdrawing more and more because I don’t have the energy to stay on my treating professionals the way I used to, and I seem to have lost the belief that any of these new doctors have the will to truly be there for me through all of this in the long-term.

I waited over a month to hear back from the new GP’s assistant regarding what was going on with my referral to the Dysautonomia specialty clinic and it wasn’t until I received a letter from the out of state clinic coordinator last week that I even knew there were things they still needed from my current doctor and hadn’t received; namely 3 orthostatic blood pressures on 3 different occasions, and the records from Emory. I don’t know how she will handle this, but I hope in a way which is helpful and won’t shoot me in the foot right out of the gate. Things are becoming alot to bear once again. I made 3 appointments for later next week for the BP measurements to be taken, but as for the other, this new Primary Care doctor is going to have to figure out how best to handle the controversial medical records so they don’t do any further damage and that won’t be easy.

She probably had no idea just how bad they were until she requested them, looked for herself, and was shocked to find that my foreboding admonition was dead on, and that providing these could actually sabotage my chance for a truly independent evaluation and stand in the way of my getting the care I need. She may not have fully grasped what I was telling her initially about the gravity of this dilemma, but I suspect she gets it now and is pondering what to do.

It is only that I was at Emory for the longest period that these doctors feel they have to have those records, but I’m sure this was expected and intended by The Dark Man, and the others who fell in line with him later on when they dirtied them up. This was an act of hate disguised as “medical opinion” and I did not deserve it. And for what? Because I dared to be proactive in my healthcare and be an active participant? Because I read research papers and bring them to my doctors to discuss? Because I have the temerity to speak intelligently to them and then they feel threatened?

If you guys (and a few gals) who did this are reading this does this make you feel like a big man (or woman) to abuse your power against a chronically ill patient just because you can? Only a coward does something like this. Go ahead and try to rationalize this, but the truth is you can’t because this kind of behavior is predatory and indefensible. This is a real person’s life you’re messing with!

How long it will take before these heinous charted statements are considered “in the past” is anybody’s guess, but in the meantime I continue to have to answer questions, like “why aren’t you still seeing a neurologist?”, and “What happened at Emory?” Such questions continue to come out of the mouths of new doctors I meet. Each time it is traumatic and embarrassing, and this is unfair as this should not be my burden to bear, as I did not ask for any of what happened to me.

It’s already nerve-wracking to see doctors for the first time, but then to have this hanging over your head which could kill these new relationships before they have a chance to get started just rubs salt into the wound. Over time, this has resulted in my not wanting any relationships. I don’t know if that will ever go away, because something inside has changed. It seems my primal self has come through and I can’t put the Genie back in the bottle even when I want to. I am still the honest and true person I always was but there is a new edge to me that remains. It’s as if a layer of skin has been shucked off and beneath is the more reptilian self that I have worked for years to refine. Stripped back to my basic survival and subjected to months of attack and no soft place to fall has left me more primal than I can remember being my entire adult life. Out of necessity I have to be able to shift gears in an instant and I don’t do transitions well. I never have, but having the experience of being flanked on all sides and not being able to discern friend from foe and repeatedly having given people more benefit of the doubt than they deserved and been burned in ways I’d never imagined has given me the instincts of a wild animal.

I know now that the smiling face I see before me might not be what that person is really feeling, and what I read as friendliness may just as easily be a form of manipulation to get a desired response from me as it could be genuine. Learning that so much in life is not what it seems is a hard learning curve after living most of one’s life believing what I see and taking it at face value.

Some of the characteristic Aspie childhood reactions have returned but then some of my reactions are new and unfamiliar. I find myself in a world I don’t understand and am ill-equipped to navigate, unable to rely on my own body or brain from one day to the next, nor anything around me.

There is grief around this and it seems like it’s going to hurt for awhile. When Dr. V. wrote in her first note “she has cero (zero) insight” she couldn’t have been more off-base. At the time I saw her the first time I was being absolutely flooded with new and upsetting insight, almost more than I could stand. Right then I needed someone genuinely caring and compassionate to listen to what I was going through and acknowledge that what I’d endured (my health difficulties and the abuse around that recently, and in going so many years with unaddressed Aspergers) was alot for any one person alone to go through, and to understand that what I was saying was “the real story” and not feel the need to look behind my words for some cryptic meaning that wasn’t there. My motives are pure and they have been all along. It did not help that I was villified and pillaried again and again by one critical person after another and pounded into a pulp as I was because a select group of cruel impaired professionals decided to go after me to satisfy their own self-serving agendas. These wanted to view me as less than honorable and projected their own dishonesty onto me.

When I first walked into her office I felt completely cornered and terrified. Though my face may not have shown it, I was. After having that experience at the hands of a neurologist in the ER I lived in fear that nobody would believe that a senior doctor would do such a thing (especially after T.J. the faux patient advocate said as much to me). I feared that I’d suffer more of the same mistreatment, and it was all I could do even to stay in the room for the time I was at the appointment. Letting her touch me was too much to ask right then and she should have respected that when I told her not to.

I didn’t know it yet but I had good reason to fear because her initial judgment of me was not nice at all. To this day I don’t know exactly why she jumped to those conclusions having just met me; whether she purely bought The Dark Man’s take on things hook, line, and sinker, or whether something I said or did gave her the wrong impression. Ironically, we never even talked that first time about the ER incident nor her cynical thoughts. I wonder what other insight she expected me to have that day. All we talked about was what had been done in the way of testing, what testing to do next, physical therapy, and possible treatment. There was no way I could have guessed what she was secretly thinking. Other than her being kind of pushy the first time regarding doing the exam, and going on immunosuppressants if it were found that my Sarcoidosis was in flair it was the usual question and answer that goes on in any doctor’s office. The conversation really never “went there” to what she was thinking about me at the time so there was no real opportunity for me either to agree or rebut her intial impression. The note implies she was trying to convince me of something but in reality the subject was never discussed at all. In fact she went to great lengths to conceal it from me. I only surmised that what she’d written was pretty bad after my then GP and pulmonologist started behaving as if I was totally incompetent, sneering and not taking my word for anything. Even they didn’t come out and state exactly what she’d written but gave me a much more sanitized version.

If I’d known the exact nature of what she was suggesting then maybe I could have made another appointment with her and cleared it up before she went on maternity leave so it wouldn’t have continued to poison my long-standing relationships. Maybe then I might have made it in time to those out of state evaluations before Administration had a chance to sabotage them.

Maybe she would have been on the same page earlier if only I had had the opportunity to sit down and discuss this with her earlier (the discussion I had with her at the end) and who knows, maybe things wouldn’t have ended the way they did.

Maybe she would have gone to bat for me if and when Administration decided to pull the plug on her attempts to finally make things right once she realized she’d misjudged me.

Although she later went back and reevaluated her stance once she began to see first-hand some of the medical issues I was talking about and when we had the talk the last time I saw her in the office, the fact that she could ever have thought me illigitimate in the first place left a gash in my soul that I don’t know will ever heal. I’d like to think in time it would, but as I said, I’ve been changed by this whole experience and in some ways indelibly. 

Her initial doubts and her Nurse Practitioner K.S.’s even worse, horribly accusatory charted statements after just one meeting with her still sit in my medical record and no attempt has been made by those parties nor by Administration to remove them. They and other statements which similarly attack my very character continue to muddy the water and stymie progress towards diagnosis and treatment for this as-of-yet-unidentified condition (or conditions).

For an Aspie this is nothing short of a nightmare. To have such horrible and utterly ego dystonic labels bandied about with reckless abandon even when they could only legally speculate and not diagnose, have them branded there and assumed to be fact for eternity when the truth is far from what they wrote is excruciatingly painful.

Sometimes I wonder if these doctors who worked with me in the clinics ever think of me and when they do what they think in retrospect. Is it fondly, or do they remember me with bitterness in the final analysis, or both? I may never get to ask them nor get an honest reply because they are capable of a kind of treachery and duplicity I am not. I want to confront them sometimes with their own duplicity; “who now do you think is the one faking?” Sometimes I wonder if they ever regret how they handled the situation with all the runaway gossip; how they allowed it to drive a wedge into some important doctor/patient relationships and laid years of trust built between us to waste.

I sometimes wonder if they had it to do over again would they have listened to me and taken what I said seriously as more of my illness(s) have fleshed out over time, and maybe they have occasionally read my blog or heard how I’m doing from others who have. I don’t want to miss them but sometimes I do (not The Dark Man, of course, but the others). Some moment in time before all of this happened will come into my head at random times and suddenly I find myself crying. I used to think that no matter what happened there would be at least one or two doctors I had a long standing relationship with who would help me through it. That can make all the difference in the world when one is seriously choronically ill. Knowing there’s somebody pulling for you who considers your life worth saving and nurturing for as long as you can gives a patient the little extra energy they need to keep fighting whatever health problems they must face. 

The complete dissolution of trust and the betrayal aspect inherent in this experience has completely shaken my sense of safety in the world at a time when I still need at least one doctor to be working closely with me, and to know that no matter how bad things get they are going to stick with me and help me through it.

In the past month I have really begun feeling uneasy as other of my symptoms have progressed and interfered with my activities of daily living; notably I have found it increasingly difficult to sign my name or address an envelope by hand which is something I need to do pretty often in the running of my business.

There’s a lag when I begin to write. It seems to be a progression of the motor slowing I’ve had before at various times, but now it’s much worse on a baseline. It’s affected my jewelry-making severely already, bringing it pretty much to a halt.

I’ve been working hard to find some sort of jewelry or other product I can still make and sell but I find that Kanzashi flowers are taking much longer to create than they should. I found that using a lighter to shape the petals was nearly impossible, as I no longer have the dexterity necessary to get it to ignite reliably. After a few hours of trying I developed a big blister on my right thumb and finally had to use a candle instead. Even holding the petals in place in the characteristic origami folds is becoming more difficult from day to day.

At that rate there’s no way I can make the money I need to with the long hours of labor it requires for me to complete them, and then the effort expended requires that I literally take two days off due to the severe fatigue that results. And just putting together a salad also lays me up for a time thereafter.

Although I have long years of experience as a patient advocate, in recent years I have mostly been an artist by trade and an artist needs one’s hands to work in order to create things that can earn money. Not being able to do these things anymore is very distressing, as art and fine craft is something I really enjoy doing besides its marketability.

In addition to my hands, my brain in general just doesn’t seem to be doing well in terms of processing and executive function. (Believe me, I am struggling now to write this blog post and keep it organized and it’s taking me hours to get things just right).

I have the rescheduled Movement Disorder clinic appointment in early January, and now again comes the part in which the Primary Care doctor must fill out the form so that this non-profit organization can cover the travel expenses, and the airline form for me to bring my oxygen concentrator on the plane. There should be time if she gets right on it now, but then the application must be approved. I only hope she does not delay, or we’ll be behind the 8 ball once again. I had to wait 6 more months for this appointment after Emory sabotaged my first trip.

My nasal congestion is still going strong. The Immunologist wants me to see a Rheumatologist, as this could be caused by another autoimmune disease. It’s not really like an allergy and doesn’t seem to be related to any food or substance though is temporarily relieved somewhat by antihistamine but even more so by Ibuprophen. It has been pretty persistant, and unlike many of the other symptoms seems to be present pretty much every day each time the medication wears off. I am having to increase the antihistamine to see if that is more effective.

As for the official ASD evaluation; that is still up in the air as I’ve as of yet been unable to find someone who is qualified to assess adult women and accepts Medicare and Medicaid. There’s a non-profit organization trying to find someone who takes my insurance and/or a reduced fee, but most of these neuropsych people only want cash and aren’t willing to do a feasible sliding scale and I simply don’t have that kind of money. It’s going to cost around $2,000 in order to get the kind of iron-clad evaluation I need to protect me from further misinterpretation and mistreatment by doctors. For some adults getting this evaluation is just a matter of needing validation or closure, but for me it’s a safety issue. My GoFundMe account is still open but it’s been awhile since I’ve obtained any donations. Hopefully with the holidays coming things will pick up there and on Etsy. Right now I’m even having trouble paying all my utilities. There’s so much health-wise that needs to be done it’s overwhelming, as is everything else I try to do now.

I don’t know how much my son is going to be able to help me logistically in the foreseeable future. His surgery did reduce his seizures but didn’t get rid of them entirely, so he might continue to have cognitive issues of his own and I don’t know whether he’ll be safe to start driving again or not. It sure would be helpful if he could come up and help around the house and drive me to doctor’s appointments and that sort of thing, but at this point I just don’t know if that will be possible.

Right now the future as a whole looks very unsure. I can only hope that I can build something solid from the shambles that this domino-effect has left my life in. Every day I wake up and try again.