Just like my refrigerator which has finally gone caput after intermittantly working and not, my body has persisted in giving signals which cannot be overlooked forever. Finally, finally there has been a break in the case! I received a call from the referral coordinator at Vanderbilt that I’d been accepted into their autonomic clinic. It came nearly 6 months after the GP I’d seen after leaving Emory had bungled things so badly and I’d nearly lost all hope of ever getting help for my Dysautonomia. Thankfully the specialists there were able to see beyond all the bias and recognize a legitimate condition when they looked over my application and odd dysregulated blood pressure pattern and plethora of other body dysregulation symptoms. Despite the fact that the near syncope had again subsided by the time the call came enough of a pattern was emerging to make it to the next level. I have been assigned to the doctor I had hoped to see, one who understands that Dysautonomia isn’t all about blood pressure and isn’t merely in one body system. After all the time that had passed and no local neurologist yet to replace the two I lost it seemed almost a miracle.
Then, amidst the neurological symptoms have emerged yet another growing problem; the return of increased pain in bones and subluxation in joints I had last summer , only this time with some added and rather alarming features. When you wake up in the morning with your fingers bent back and touching the back of your hand in a way your hand is not supposed to bend, fingers locked up, elbows hyperextended, and at other times pinky on one or the other hand flaccid and hanging limply, you know it’s time to get some real answers.
Despite much trepidation I made an appointment with the GP who ran some preliminary bloodwork, then referred me to a Rheumatologist, a large, heavy-set man with a thick African accent. It took several tries to understand the questions he was asking me, not only because of his accent, but the wording of them was idiosyncratic and therefore the meaning was unclear.
There were some pros and some cons to this doctor. Initially he was unsure as to what was causing these symptoms; whether it was some sort of Arthritis, or whether it was something wrong with my tendons, or possibly caused by my Sarcoidosis, he was operating on some old information about how to diagnose certain conditions, and limited understanding of the systemic nature of the conditions while attempting to look at differentials.
He did a very abbreviated Beighton scale exam for Ehler’s Danlos, acknowledged the hyperextension in some joints such as elbows but stated he didn’t think I quite met criteria but that I “might have a variant of it” seemingly unaware that EDS is not merely 1 disease but has 15 or 16 types, but the tests he ordered at the end were a step in the right direction. He had some X-rays done of my hands, feet, and hips, and did uncover inflammation in both hands and both hips. As for where it was coming from; bone, joint, tendon, or all of the above, we don’t yet know, as they would need to do an MRI to pinpoint it more exactly. He had some bloodwork done related to Rheumatoid factor, and next will be ordering some genetic testing, something that is long overdue, and could answer some very important questions that other testing cannot.
If he orders testing for all possible conditions given the symptoms I’ve been having for the past year or two we’re bound to uncover at least some part of this mystery. I am operating at a distinct disadvantage being unable to know my family medical history.
They really should do genetic testing on everyone who was adopted in which records are closed or non-existant, as it could save them years of agonizing other work-up which tells them relatively little about why they’re ill, and spare them the scorn and chiding inuendo that goes along with the lingering of unknowns. The common practice of assuming a patient is crazy or making it up after a certain unspecified period of time without answers needs to be abandoned in the dustbin of history, as it does nothing constructive in finding the real cause for one’s illness. Punishing the patient because they are ill and continue to be and doctors just can’t figure it out never meets standard of care and doesn’t afford that patient the dignity they deserve. Too often such an approach is tolerated in the field of medicine when it shouldn’t be. Not only does it open the door to apathy and a lack of empathy toward the patient by others who come after, causing one’s healthcare to stagnate for months or even years, but can set up a domino effect of cynicism toward that patient, often the precursor to relentless bullying and outright abuse, sealing their fate where timely diagnosis is critical to outcome.
Those of us who are chronically ill must keep on searching even when others have given up on us, left us for dead, and thrown in the towel as it is only we here alone with our body at 4 AM when we awaken with pain or other symptoms. None of the doctors or medical staff comes home and helps us with our daily lives.
Doctors continue to notice my Myoclonus during their exams, but I have not yet found a suitable Neurologist for that yet. Perhaps following the thread via Rheumatology will lead all paths to meet in the middle and when the time comes the right Neurologist will have an unbiased view of the bigger picture and will be less likely to just dismiss my abnormal movements simply because they are not happening all day everyday. The Keppra is controlling it quite a bit and at least I’m not up all night with it like I was before I was on that medication. I had to put off the appointment at the UF Movement Disorder clinic once again because I have no way to get there, as I don’t have a doctor to fill out the form so a non-profit can cover travel and lodging, and I hope the Rheumatologist will fill it out for my trip to Vanderbilt. I have about a month and a half to get that set up, as that visit is in early October. I definitely don’t need to miss that one, as there are people waiting in line to get in there and I don’t want to forfeit this opportunity.
Little by little the dust is clearing in the aftermath of Emory’s attack upon my very being. Sometimes only time will elucidate the answers; time and distance, and the body will reveal its secrets. I can only hope it does not come too late for me. I continue to struggle each day to get the smallest of things done. The fatigue is immense and I rarely have the energy to work on projects for my Etsy shop, and I find each month I am still unable to stretch this little bit of money to cover everything I need. With the added problems in my hands now combined with my tendancy to fall asleep suddenly and unexpectedly I am realistically not able to produce much in the way of work no matter how much I want to. I seem to have short windows of energy and control of pain and then suddenly I just have to stop what I’m doing, rest, or sleep. Mostly my activities now are passive activities, difficult for one who is a doer by nature to step down to watching others do, but my body won’t let me do otherwise.
I’m still gradually plodding towards getting a hydro system set up for indoor produce growing but it seems there are always unexpected expenses nearly every month and not enough money to cover those and this too, so I have had to put off buying some of the necessary equipment.
I currently have lemon and tomato plants growing, some indoors, and some in pots on the porch, but the indoor plants were attacked by fungus gnats and I lost some of them. It rained almost solidly for a month or so here, so the ones on the porch were looking kind of pale and yellow from lack of sun and nutrient wash-out, but now that it’s been drier they’re nice and green again. Looking forward to their flowering and fruit soon. The tomato plants on the porch have gotten quite tall now and will need to be trellised. They are about twice as tall now than they were when this picture was taken.
I transplanted the lone strawberry plant I had in the hydroponic bucket I’d rigged up into a jar to clean the nutrients out and it’s looking kind of wilted now. I don’t know whether it will perk up or if it’s on its way out, but it’s the last of 5 that died (the roots of the other 4 I hadn’t noticed for several days weren’t long enough to touch the water).
I was able to finally purchase some microgreen/sprouting seeds this month by the pound (something I need less light and nutrients to grow than the full-term veggie seedlings), and slowly but surely I am making progress toward obtaining a ready supply of healthy fresh food. I bought 4 Lbs of seeds (Alflafa, Clover, Sunflower, and Sugar Snap Pea) all for under $30.00 and this will probably last me 6 months to a year. Compare that to what you would spend on a good stock of vegetables to last the month from the grocery store and you will save yourself lots of money! And yes, you can grow things like broccoli, turnip, beet, carrot, lettuce, spinach, and cauliflour as microgreens too. Produce at the grocery store has continued to go up in price, and this is one good way to cut the grocery bill. Microgreens, (young greens/sprouts), research has found, contain 4 to 6 times the nutrition of their mature vegetable counterparts. I eat sort of a macro-biotic/mediterranean diet already, and the microgreens will enhance that.
Some people go gluten free…while that might be right for some, I don’t think gluten is a contributing factor in my case, but I probably could use some immune boosters, which microgreens will provide me. I am a big proponent of juicing too. The closer to real food it is, in my opinion, the healthier it is. I’ve never been big on pills and synthetic powdered supplements. I do use powdered herbs in my cooking such as powdered Rosemary from the Farmer’s Market with no additives or preservatives in it.
The state issue food people get on Medicaid (here in Georgia) is basically nothing more than TV dinners full of goop and fillers, and contrary to popular belief it is not nutritious! I did an experiement and fed my dog nothing but that for a month and she lost lots of weight but it proved to be much less nutritious than the Rachel Ray Nutrish Chicken and Veggie dog food she normally gets. Her fur became dull, she seemed a bit lethargic, and just didn’t look so healthy. (This is an earlier photo; not taken during the experiment).
I was not going to subject her to more than a month of this for her own health and safety, but it proved what I had suspected, that such meals are a poor replacement for “real” food, and that Medicaid recipients are better off going the route that I’m going and growing their own food whenever possible. Hydroponics can be expensive but it doesn’t have to be depending on the type of equipment used, and I suggested to my caseworker that they 1) consider contracting with local mom and pop farms for fresh produce instead of their current TV dinner company contract, and 2) that Medicaid recipients be set up with a basic hydroponics system to grow their own food (teaching them to fish so they can eat for a lifetime), as these options are far superior to the chopped, processed and reconstituted mystery meats, and gooey, gloppy stuff the current contractors use in their food to make it appear more substantial than it really is. She did not sound interested, (but then she doesn’t have to eat the crap herself she is setting her clients up with. If she did I’m sure she’d have been on that phone to her higher-ups the day she received all the contact information I provided to switch contracts; in with the fresh, and out with the faux).
It has been a long and winding road, but finally there’s some forward movement in my medical care. Maybe, just maybe with a little help I can get things pinned down so that I can get onto the treatment phase and focus on quality of life.