Friday morning filled me with a sense of foreboding. I showered, dressed, and prepared some coffee, trying my best to distract myself and do comforting things so as not to be too terrified of the early afternoon appointment with the neurologist at Emory’s General Neurology Clinic.
As much as I’d gone over it in my mind what I was going to say, and telling myself I could always say no to things I couldn’t help but shed some tears as I waited in the kitchen with my dog, Carmella for the transportation van to pick me up and deliver me to some unknown fate; good or bad, I didn’t know. Despite my best attempts to stay calm I felt like poultry aware of its impending slaughter with every passing minute.
I told myself that at least by going in there even if just to talk to her I’d be established in case I needed one of the specialty clinics later on once the independent evaluations were completed over the next few months, and maybe I wouldn’t be as frightened when the time came to see the out of town Movement Disorder specialist.
It wasn’t long before the driver was knocking on my door, a heavy-set black guy who looked to be somewhere in his 30s. I rushed out in my power wheelchair dressed in black and white long-sleeve print shirt, bright red cotton pants, and a camel brown coat which had soft faux fur on the inside. In my hurry halfway down the ramp to the driveway I realized I’d forgotten my pillow and thought “Oh damn, now my neck is going to kill me by the time this is over” as my wheelchair doesn’t have a proper headrest or any neck support, but it was too late to go back and get it. I had my usual Styrofoam cup of ice water with me and everything else I needed, so I ventured out hoping for the best.
When I reached the waiting van another guy got out and let down the left and I loaded up, then positioned my chair so that they could secure it to the fixtures in the floor. Being that I have a Hoveround, these guys never know how to attach it, so I had to show them where the hooks could be connected so that the ride would be safe. With a little tinkering they got it hooked up and the second man who was chubbier than the first sat down on a bench behind and to the right of me. Halfway down my street as we pulled away I heard loud snores coming from the man behind me. I glanced over and he had dropped his cellphone, slumped over in a half-sitting-half reclining position. I motioned to the driver who seemed unphased though slightly amused and he remarked “Oh yes, he does this all day. All day. It’s just part of the package.”
As we neared our destination the man in the seat behind me was snoring so loud I thought he might have a stroke. I mentioned to the driver that he might want to look into having a sleep study done and said that if the company provided health insurance he could have it done in this same building, that for someone to be sleeping that much on the job wasn’t normal and there had to be something medically wrong. The driver said he was glad someone else noticed and that they’d have to look into that as it would be a good investment, given that he didn’t know whether this guy would keep his job if this continued.
I entered the building, then went to the 5th floor. The waitingroom was modern with a curved wooden front desk and a young woman with black-rimmed glasses and long black hair who appeared to be Indian or Pakistani descent sat behind it on the left, and a young man sat at another computer terminal on the right. A flat screen TV was on mounted on the wall on the left side of the room. There were only a few other patients there sitting in danish-style wooden chairs that were positioned in two rectangular formations on each side with a space for people to walk through in the center.
I went over to the woman behind the reception desk and checked in, and was told that the doctor was running a little late because of a meeting but would be out shortly.
It looked like a group of about 10 men and women filed in and down the hall to the rooms to the back just as I positioned myself near a small end table. I fidgeted a little, rubbed the inside of my furry coat, then decided to get out some pieces of ice to suck on. An elderly man and his wife sat down just to the right of me, and it never fails, when I want to be discreet something like this always happens. The ice had melted slightly and stuck together so a piece I was trying to break off flew across and landed on the carpet in front of me out of reach. Thee wasn’t much room to maneuver my wheelchair and I was afraid I might run over the wife’s foot if I went to pick it up, so I wasn’t sure what exactly to do. Luckily the woman asked if she could help me and got up and deposited it in the sink on the other side near the TV. I thanked her and then got a few pieces of ice, reached over to pick up a National Geographic magazine and began flipping through it to find an article that interested me. Finding one about wolves in Canada I began reading, anything to distract myself. 15 or 20 minutes later a young black woman with thing braided hair extensions called me back to one of the exam rooms. I followed her to one of the ones on the left off the main hall and she took my vital signs.
I asked her to take the BP in my left arm because my right was in quite a bit of pain. It was the muscle that runs near the inside of my elbow to forearm that I’d injured brushing my hair in October the morning before seeing Dr. Trotti, the temporary neurologist connected with the sleep center.
As is often the case my diastolic blood pressure was high. My new patient forms and medication sheet sat on the small nook-like desk by a computer screen. The room was small and minimally decorated with a flat table to the right of where I was sitting and cabinets and a small counter on the left near the door. There was a rolling chair by the computer.
The nurse asked me a few questions, two which I choked out a rather weak and breathy response, told me she hoped I’d feel better, and said the doctor would be in shortly. My arm ached, my neck and back ached, even the muscles in my legs ached and I wished I were home, safe in my bed. I realized my watch had stopped but there was no clock on the wall anywhere. I read some more of the magazine and fiddled with the fur on my coat some more trying to quell the panic rising in my throat. Each minute that passed seemed like an hour.
Then finally there was a knock at the door. It opened and in walked a rather plump woman with a round face who looked almost nothing like the profile picture on Emory’s website. In the picture she was slim and looked no more than 17, but here in person she appeared to be somwhere in her mid to late 30s, rotund, her hair, a streaked blond like in the picture but with more body and cut slightly shorter, a few inches longer than shoulder-length.
She extended her hand. “Hi, I’m D.V.” (gentle hand-shake); so far so good. Although the information on the website said shed been trained in Bogata, Colombia she had almost no accent. Taking a seat in the chair across from me a few feet away she proceeded to tell me she’d read my record. (“Oh shit!”) I thought, and wondered which ones she’d read. I dared not ask, not wanting to open a can of worms. She asked me what brought me in and I recapped my symptoms and referenced what I’d written in the new patient paperwork. I gave her a brief rundown of the history and progression over the past 6 months and after just a few sentences she moved towards where I was sitting in my wheelchair and asked me if I could take a few steps, which I did, then sat back down.
I had already decided all I wanted to do was talk that day, but apparently she had other plans. I watched her carefully to see what she was going to do.
Taking out a penlight she shined it in my eyes. After looking at my eyes she asked me to look at her finger from side to side, up and down.
I tolerated that but in my own mind told myself that was going to be as much as I was going to take of anything of a physical nature. I didn’t know her and didn’t know her agenda just yet and the man who had hurt me with such exam had left a nasty imprint on my limbic system that I couldn’t shake no matter how I tried. I knew only too well that women were capable of great treachery as well even if they seemed kind on the surface. Gone forever were the days when I took people at face value. I tried that and saw where it got me. I wouldn’t be so trusting this time.
She took out her tools in a small towel and laid them on the bench and that’s when I freaked!
“Could we not do that right now?” I said, trying to sound pragmatic, not wanting to show just how panic-stricken I actually was inside. My relative composure completely went out the window when she pulled out the hammer. It was a smaller one than the one Dr. M. had used, and more of a rounded type, but nevertheless it was still a hammer. I was having a bad pain day and was in no mood for this. Every fiber of my being, every strand of my muscle was screaming (“No absolutely not!”). If I could have jumped over the back of my chair and run I would have at that moment. I backed away as far as my chair would let me, but she made no move to put it down. “I had a bad experience with a neurologist!” I blurted out in a last ditch effort to get her to back off.
“I’m going to do it on me; not directly on you” she said placing her thumb between me and the hammer. I was shaking my head no knowing that still didn’t change anything. Then seeing there was no escape I braced myself. Her thumb was little buffer for the impact and although it wasn’t near as hard as what I’d had in December it didn’t exactly tickle.
The primal self came back and took over. I felt like a trapped animal, drawing up and cringing at each blow as though I was going to come out of my skin. It seemed as though she was trying to hurry it up but it was as though I left my body for fragments of seconds throughout although on one level I was aware of my body struggling. I’m not exactly sure where my consciousness was but it seemed as though it was receded tucked as far away inside as possible.
It seemed as though every nerve and neuron was on overload.
Once she finished with the hammer she went about putting her hand under at the back of each knee and jerking up sharply and something similar with my arms. This elicited severe spasticity in all 4 of my limbs, and eventually the back-bend arching movements I sometimes have.
After that and pushing and pulling on various muscles she commented after she went back to her seat across the room that she thought it wasn’t so much weakness but spasticity that is the problem. She recommended physical therapy “to relax the muscles” and said she wasn’t suggesting regular types of exercises, but stretching. When I said that massage also helps she said that’s because it relaxes the muscles “and the mind”. I made a mental note that she put that in and hoped that she wasn’t using that as a sneaky way to make it all in my head as Dr.M. (AKA The Dark Man) had said.
Then she told me it’s possible that my Sarcoidosis could be causing this and the Dysautonomia if it has reached certain parts of the brain or nerves. She also said that it can affect nerves in the hip. I have been having pain in that area, especially the left hip and gluteus muscle. She seemed to be leaning strongly on the hypothesis that it’s my Sarcoidosis in brain and/or hip nerves and didn’t think the spinal findings and TMJ would be interfering with nerve impulses.
Then her demeanor turned kind of intense. “What are you taking for your Sarcoidosis now?”
“Benicar, off-label every 4 hours; the Marshall Protocol” I replied.
“You realize the medication is not working” she said rhetorically. “Have you been on Prednisone?”
“And what was the result?’ she asked.
“It wasn’t good. Extreme rage. I can’t risk that” I replied.
“If we do find that your Sarcoidosis is active and affecting the brain you really need to think about going on immunosuppressants”.
By immunosuppressants the dreaded heavy-duty disease-modifying agents like Enbrel and Remicaid were what she was referring to. Her eyes seemed to drill into mine. Time slowed to a standstill. I fought back tears and told her how I’d outlived many people I’d come to know in the Sarcoidosis patient community because I’d not taken that route. I saw too many people end up with complications that were as bad or worse than the disease, some ending up requiring transplants and pacemakers because of the damage done to their organs, only to die a horrible death. These people died way too young.
I told her I was afraid that after the 10 years I had to go off the Marshall Protocol it might have been too late for it to be effective when I went back on it and maybe that’s why it isn’t working anymore.
“If it’s affected the brain on this level then probably so. We need to do a gallium scan to find out, and I want to look at your MRI film from Piedmont.”
“OK, but they didn’t see anything. I’ve heard it doesn’t always show up in imaging anyway.”
“Yes, but it doesn’t always just show up and say “See, here I am.” It occurred to me that this was the first time I detected her accent.”If it turns out” she continued, “that it is your Sarcoidosis, if the gallium scan lights up anything we won’t need to do more tests, but if not we will need to. If it is your Sarcoidosis then you really really need to go on immunosuppressants.”
I could no longer keep eye contact. This was becoming too much and I fell silent, just waiting for it to be over. She was still looking at me when I glanced back. “Okaaaaaay???”
The words wouldn’t come out. I was in total lockdown for what seemed like an eternity but was probably not more than about a minute in actual time. It was not OK at all.
I think she repeated it about 3 or 4 times. The pressure was like a thousand pound weight. It was the same feeling I had when the nurse practitioner in Gastroenterology kept pushing me to have a colonoscopy when I can’t withstand the stuff you drink and its effects because of my Dysautonomia. You just know you can’t do something and you find yourself unable to speak.
I knew then that beyond these tests it was not going to work.
This was further confirmed by the fact that she is 9 months pregnant and going on maternity leave until May starting next week, that she is somewhat lackadaisical about responding to her patients on the patient portal, and that sometimes a nurse practitioner or another doctor sees her patients.
She didn’t seem like she was exactly going out of her way to win me over, and damn it, after what I’ve been through any neurologist worth their salt better be!
I’m all for accommodation in the workplace for women who want to have children, but quite honestly I don’t need someone who is distracted and divided right now, whose head is not in the game. I need someone who has the time to devote because what I’m dealing with medically requires it in order to do the job right. I also need a neurologist who truly gives a damn and respects my boundaries. I wish I could see Dr. W. She did, but it seems like I’m caught in a terrible catch 22; those doctors I feel comfortable with for one reason or another can’t or won’t do it, and I’m left with the ones who don’t get it and don’t care to.
When I got back up to the front desk the man who was dealing with release forms and orders handed me the physical therapy order. It wasn’t until I got home and looked at it more closely that I realized it didn’t reflect the mere stretching she’d told me verbally she was recommending. The interventions said “Gait training, Functional movement”, and “Exercise” (not specifying stretching). I’m tired, and I don’t just mean this week, this month, or this year, but existentially tired, and I need rest. Rest and true, genuine kindness.
The cover picture I chose for this post is a sign I keep on my wall as an affirmation, visible from my bed. In the light of all that’s gone on lately I am struggling to hang onto my self-esteem and have periods of self-doubt in which I begin to wonder. You might have noticed that the letters aren’t straight; that they veer up from left to right. (More about the significance of that later).
First, I received a letter from Emory’s Chief Compliance Officer, A.A., stating they refuse to ban the offending doctors from access to my electronic records (she says “for purposes of billing”). I had to laugh at that one, as it seemed the epitome of irony that they should even think about having these morally sick and impaired “professionals” paid by insurance nor by any source for that matter after how badly they mistreated me. Emory is out of its collective mind if they think these people should be in any way rewarded for abuse and neglect! If the hospital wants to stand by these criminals then they can just eat the cost as far as I’m concerned, and I’m actually considering sending each of the 4 doctors a bill of my own for wasting 9 or 10 hours of my time, for the mistreatment (physical and psychological) and failure to render aid, and for the libel that still sits in my chart because of their malice and irresponsibility for which I will have to incur additional costs to seek specialists out of state.
Some patients have started billing doctors who are late just like they do with late patients, so that gave me an idea that I should do the same for how these people compromised my care and are now causing a delay in it because of their actions (not to mention the intentional infliction of emotional distress inflicted by Dr. P. R. M. when he administered his interrogative neuro exam). The guy is clearly a narcissist and scouted me as someone he thought would make an easy victim because he knew I’d been abused as a child through Piedmont’s social history record. Like any predator he saw an opportunity and he took it. He gave a phony (non)apology to the “advocate” to pass on to me, saying “I sincerely apologize that you weren’t satisfied.” Now that’s just gross!!!! Ewww… Why would I be??? He was beating me! Sorry bud, but take that somewhere else. I’m not into that!
What I hadn’t anticipated was just how much of this approach was being adhered to as a “team” by all 4 doctors and just how duplicitous Dr. H was in the organization of my “treatment plan” while in the ER that day and evening. I was not thinking “conspiracy” when I was there, believing that each person was acting separately on their own as individuals, but now after receiving the letters from the “patient advocate” and Dr. H’s manager I now know that’s actually what it was; a conspiracy to discredit me (probably because I was expressing that Emory had moved too slow thus far in getting me to the clinic that could help me, and now I was severely disabled, and I guess they didn’t like dissent). If I’d been the mental case they were trying to paint me as I would have been “paranoid” (in their eyes) and would have picked up on the fact that their approach to me was organized, but to the contrary, I was entirely too trusting. I believed everything Dr. H told me and totally fell for her trick; her phony kindness. I believed she’d prevent anyone from hurting me and the whole time unbeknownst to me she was setting the stage for me to be hurt. Trusting too much (and the wrong people) indicates something else (for which I am arranging an assessment as soon as a particular expert gets on the panel to accept my insurance in about 3 months).
To this day I have a hard time aligning my emotions with my logic when it comes to Dr. H, and that’s scary. The others I can work up a good firm anger at, but her; I just feel profoundly hurt by. What she did was so sneaky that it confused me. Part of me still wants to work it out with her but my logic tells me she’s not a safe person. She hasn’t emailed me again and I guess that’s just as well, although I wish I would have gotten an explanation from her directly (even if she was going to lie) instead of her hiding behind other people like a coward to do her talking for her. She owes me that at the very least.
I realize now that this vulnerability has caused me problems with others I’ve known in the past who were two-faced and in the end totally took advantage of me and tore my heart out. I need to close this gap as soon as possible, but how does one do that and still let the good people in whose kindness is sincere? How does one not become jaded and start questioning everyone’s motives? I naturally tend to take people at face value and I kind of like that about myself, but it has bitten me in the butt a number of times. I sure hope this is something I can do something about and that I’m not forever broken in my ability to tell the difference. Now that all false friends have left and I have a clean slate this is a big thing. I don’t think I can survive another hurt like this. I need to get it right the next time I do trust someone.
Getting back to the topic I brought up earlier about the sign I have on my wall; I am thinking that what I have may be generalized dystonia of some sort and possibly part of a larger syndrome. Last night I watched an interesting speech on Youtube by Dr. Steven Rich, a movement disorder specialist about Atypical Parkinsonian Disorders and found out that in several of those, people have Dysautonomia. He says that in early stages of Multi-system Atrophy for instance, people can have falling within the first 6 months of symptom onset, difficulty getting up from a sitting position, a stiff gate, and symptoms such as rigidity or spasticity, other upper motor neuron signs, and Dysautonomia. Apparently some people are misdiagnosed as having Parkinson’s disease or not diagnosed at all because brain scans can look normal. They don’t always show findings. Often these conditions are made by clinical diagnosis and somebody who knows what they’re doing can put 2 and 2 together from the group of symptoms a patient has.
I’ve been learning also that Dystonia can be primary or secondary just as Dysautonomia can. I’m finding out that my MRI findings may be alot more significant than doctors who read them knew; that C1 and C2 vertebra misalignment and TMJ problems are often indicative of Dystonia and that I may have had that since I was a child in my neck and then as I got older it progressed to the other areas of my body. I’ve noticed for awhile now that my head is often cocked to one side and the sign on my wall slanting upward corresponds with the way my head is positioned. It’s very difficult for me to write straight. I’m always needing to straighten my shirt collar so it is centered on my shoulders because it tends to slide over to one side because my shoulders are tipped one slightly lower than the other. Also tonight I notice that my whole face is off-kilter; jaw, mouth is crooked, nose, and the way my head attaches to my neck is off.
My eyes which I had surgery on a number of years ago because they wander outward are now slipping really badly. I definitely don’t look quite right.
This past year my Dysautonomia has been worse than ever before and I’ve had alot more near fainting spells than I’ve ever had, the colon spasticity didn’t start until 2015 but I’ve been chronically constipated for years, and then finally at Piedmont hospital they documented the blood pressure instability. I faxed those records to my GP that I had to obtain from another department, and they were quite erratic.
Something else odd I’ve noticed happening in the past few weeks is that there are times when my feet get purple or blue for no apparent reason. They don’t feel different, just change color, and it often happens when I’m sitting down on the shower bench. Here are some pictures of what it looks like but they were worse than that before I dried off and was able to get my camera. Also the flash makes it not show up as dark as it actually is, but you can see it somewhat.
In this picture you can see the left foot still pretty purple all over, even down the big toe before it started going back to a more normal color, but the top of the right one had already changed.
Over the past week I’ve had several episodes of urinary urgency which don’t seem related to a bladder infection but most likely are from Dysautonomia. One of them today came on when I was in the kitchen so fast I almost had an accident, but was barely able to get it to stop by squeezing it back upward with all my might and then strangely I didn’t need to go.
My heart was doing some weird things the other night too, as if it was beating very weakly but I was flooded with adrenaline at the same time.
I now have an appointment with a movement disorder specialist out of state but the doctors in the specialty clinic are highly sought after and so I’m going to have to wait 6 months to get in. They are going to put me on the list in case there’s an earlier cancellation just in case. This guy has written a ton of research papers and is currently funded by NIH to do a study on Kinesiology for atypical movement disorders, so he sounds pretty open-minded.
Home healthcare is about to end its certification period in just a few days (the 29th) and my doctor needs to recertify it soon. I have not heard yet that he’s done it. He needs to have a plan in order for it to be covered and I don’t think he knows exactly how to do that but is supposed to be talking with the Care coordinator about it and how it needs to be written.
I need to get some longer-term services in place like the Independent Care Waiver and an agency that does these kinds of things and more like cooking and grocery shopping, but for the Independent Care Waiver I need to have an evaluation for a better wheelchair so I know what specs to put on the application. Shepherd Center does these evaluations with pressure mapping so that you get things just right for your body. The Hoveround I’m using now is OK for inside the house but I really need one that will recline and has a head and neckrest for when I need to go to the doctor and have to be out a few hours.
So far only one person has contributed to GoFundMe. If you would chip in whatever you can afford I would much appreciate it, and also send your friends and family over to my page. My income is so low I’m not even making ends meet and there are more expenses coming up. In addition to this one trip I’m making in 6 months I most likely will be going to the Mayo Clinic which involves about a 2 week stay and from what I understand you have to stay in a hotel and I don’t think that nor meals are covered.
I’m hoping for some good news about something soon! There are so many barriers to things right now sometimes I start to lose hope for the future.