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.