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.