Medicaid’s website disaster put many things behind schedule and just as I had feared one of them was my trip to Vanderbilt. Although my current GP did fill out the necessary paperwork this time it was Medicaid that dropped the ball. We are still trying to sort out exactly where the paperwork ended up and get a time-frame as to when we’ll get an official response from them. It had to be rescheduled and I fear that by the time that date comes I may be too ill to travel. It has come to a point now that it’s difficult even to be up long enough to go to my local doctor’s appointments.

Making meals in the evening and on weekends when the assistant is not here has become laborious and often so slow that it takes several hours and by the time I have the task completed I am completely exhausted. There are so many things I want to do and during a better moment I start to do some art or craft type project, something with my plants, or even cleaning or organizing and suddenly find I’m in over my head. Somehow I always go into it assuming I can do it and it always comes as a surprise to me when I find out I can’t.

Just yesterday I was making label sticks for my new pepper seedlings and was merely adding Mod Podge (a type of glue/varnish) to the surface over the label that I had printed on an inkjet printer so that the name of the plant wouldn’t run and become unreadable once everything was planted and I needed to water them. Painting on this stuff seemed like it would be easy enough, as it wasn’t as intricate as wirewrapping but once I started doing it my hand was shaking in sort of a jerky, spastic way. This was not my usual myoclonus nor was it a tremor exactly either, but it seemed like something in-between. It was really irritating because it was tiring me out quickly and making a relatively simple motor task much more difficult than it should be. I really didn’t know what to do so I tried every possible way to hold the stick and paintbrush I could. I found that switching hands every so often helped interrupt this abherent movement and I had to also brace my hand on something and alternately the stick in order to get it done. Even though I finally got all the sticks covered it was neither neat nor efficient and I kept getting the glue all over the hand that was not painting and/or dropping the stick periodically.

Then as if that wasn’t enough, when I went to take the seeds (5 each that had soaked for 8 hours) with their respective stick labels over to the little pots where they were to be planted, the sticks and their corresponding baggies fell out of my hands onto the floor and the sticks scattered everywhere. As most pepper seeds look very much alike I had to guess which was which variety by very slight size differences. I have no real idea if I was correct when matching up the fallen sticks with seed packs. I won’t be able to know now until they bear fruit.

I finally got them into the soil in the little pots, but leaning over to plant them for the 15 minutes required put alot of strain on my stiff back and neck.

This sort of thing is what I have to contend with on a daily basis. I do the best I can but more tasks fail than succeed, and those that do take a very long time to complete.

Last time I saw my Rheumatologist about a week or so ago he continued to bring up the movement disorder and push me to go to another neurologist. After what happened to me at Emory I am still very leary of them. I don’t know if I will every be able to trust one again, especially not one here in Georgia where Emory has so much power and influence. Even if a neurologist is finally able to identify what kind of movement disorder it is now that things have progressed, I don’t know what they would really do about it other than monitoring its course. It’s not like there’s a cure for these things, and I’m getting tired of medication that just controls disease (somewhat). Most of the time one deals with it alone at home anyhow and alot of dealing with it is trial and error. I don’t really think there’s a road map on how to do that, and care sheets are usually greatly lacking, as what works for one person, doesn’t always work for another. I’ve been there, done that too. Exercise just wears me out and makes me worse, so I don’t think that’s really a viable option, and I do my own elaborate stretching routine that I can manage every morning and changing position numerous times so that I can get myself unstuck enough to make it to the bathroom.

I wake up very stiff, in pain, and groggy each morning nowadays and it’s usually a several hour process before I can partially sit up in bed, then pull myself with one arm to the edge of the bed, then pull my legs over the side using gravity to my advantage, then pull myself up to a standing position, hold onto my art table hand to hand, to the wall, then the bathroom doorway.

Some days this stiffness is a little better and some days worse to the point that I can hardly wipe my bottom. Reaching behind me is not as easy as it was before. Some days I really have to work at it. Thank God so far I get it done eventually, but I don’t know what I’ll do if one day I try and try and find that I can’t. I may need to look into getting a bidet, as the thought of asking anyone else to do such a personal thing for me is just too embarrassing.

The Rheumatologist recently put me on Plaquenil for the increasing bone pain I’ve been having and one of the side effects is stomach upset and diarrhea.

Luckily I don’t exactly have it to that degree but since the Dysautonomia causes me to be chronically constipated the effect of the Plaquenil just makes me have to poop multiple times per day and it makes my lower intestines kind of unsettled. I haven’t been on it long, but I hope it doesn’t throw me back into that lower GI spasticity I had before for various episodes. Right now I am probably going more often than the normal person although it’s not overly loose. It is I’d say slightly looser than it should be, but not extremely. (This may be TMI. Hopefully you readers are not losing your lunch right about now, LOL). 

Speaking of side effects, when I last saw my liver specialist he seemed to be leaning away from his first theory about my elevated liver enzymes being due to an inactive ingredient in one of my medications and more towards thinking it’s a byproduct of whatever inflammatory process is at work in my body and that the liver is alerting to it by showing elevated liver enzymes. He thinks it is something rare, and has agreed to submit my case to the Undiagnosed Diseases Network. If it’s related to the movement disorder in some way then maybe Vanderbilt will identify it, but it could just as likely be a seperate condition from the movement disorder and/or the Dysautonomia. In any case the Undiagnosed Diseases Network might be the best chance I have to find out some or all of what is making me ill since they are not operating on the same one-dimensional disease model as most doctors in clinical practice do. They look at all systems that are not functioning and try to put their heads together across different specialties.

This article that appeared in Huffington post talks about the Undiagnosed Diseases Network and another option for people with unusual cases called CrowdMed, a trouble-shooting service I hadn’t heard of until now.

Most doctors in clinical practice nowadays treat patients as if they are just one body part operating in a vaccuum. More and more scientists on the research end are coming to view most diseases as multi-system rather than just bone, just lung, just endocrine, just brain, just heart or vascular, etc…That model seems to make the most sense given the fact that in nature bodies of animals and even plants are designed as a whole integrated system to ensure the survival of any plant or animal. Humans would be no exception.

I do hope I find out what is making me sick and that something can be done about it once that answer is (or answers are) found, because there are still so many things I still want to do, but in recent months I have for the most part made peace with the very distinct possibility that I may not live more than another few years. I can face dying, but what I can’t deal with is my steady loss of function in daily living, each ability falling by the wayside one by one. The harsh reality is life stops and waits for no one, regardless of circumstances beyond one’s control.

I’m beginning to think about putting my affairs in order (as much as I can). Not that I have alot of money or assetts, but whatever I can plan to leave as my legacy. I’m trying to complete my “bucket list” and among other things, my plan is to get as far as I can with the sustainable indoor garden and to start a Ball Python breeding project as a small investment that I can leave to my son. If I am still able, I would also like to get a few more art and fine craft projects off the ground. I’ve been learning everything I can about acrylic paint pouring. Jewelry using the techniques will be put up for sale online, and paintings in local galleries if the right shops in the vicinity will accept my work.

Hopefully this blog and my other advocacy activities over the years will inspire others to affect social change and pick up where I leave off. I hope that patients in the future won’t have to go through what I have and so many others of my time have endured and that not fitting into a recognizable diagnostic category will no longer be viewed as a reason for scorn, but instead impetus for doctors to learn and grow. One should not be stripped of their humanity simply because they are ill and doctors don’t know with what. This is in no way a moral failing nor should it invalidate the patient in any way.

And last but not least; this should be a cautionary tale that illustrates why corporations should not dictate healthcare decisions. There is an inherent conflict-of-interest that pits doctors against their patients to directly benefit the corporation. Corporations should not be given the power to decide who lives and who dies.

As time goes on I am prefering peace and quiet and the concentration required for human interaction and talking is becoming very taxing to me. I’m finding that I need more time alone in order to re-charge and I am focusing now mostly on enjoying the time I have left. Many days I’m not well enough to do much but absorb knowledge watching videos online, learning about art and animals, and watching far away places I may never have the chance to visit but can live vicariously through the footage and imagine what it would be like to travel to Africa or Indonesia,

or follow the adventures of another on the road to a reptile or art show. I fill my life with beautiful images; color, pattern, music. For awhile I can forget about the constant ache in my bones, the stiffness in my body, and the periods when I can’t keep my eyes open and fall into a deep almost hibernation-like sleep with long and strange dreams, waking briefly, stiff and inert, all the while vaguely aware in the back of my mind that one day I won’t wake up.

Sometimes I wonder if this sort of suspended animation I find myself in as I drift into that odd slumber and lucid dreaming is what it will be like when this life comes to an end.

Maybe instead of coming back like we normally would each morning we just continue to drift in these long, involved dream stories after our soul has left our bodies.