I think by now the majority of my blog posts start with "I'm sorry I don't keep this up well enough, I'll do better, things have been hairy", but, well... I'm sorry I don't keep this up well enough, I'll do better, things have been hairy.
Illustrated with favorites from my recent photos, like this one of my daughter with a random kitty.
I don't even know how to put everything I should include in this catch-up post.
Some basics include that Ruby is now Sylvana; they had to pick their name years ago while still very young, and no longer feel that it really suits. So from now on I'll be saying Sylvana instead of Ruby.
I've re-done all the cartoons and I'll be bringing them out as a book soon; meanwhile, they can be downloaded for free on this very website: just click on "The Covid Cartoons" on the upper right.
I started having weird neuropathies and other symptoms that made me face that I drank to much - like way too much. I'm not an alcoholic, but I'm that person in everyone's friend circle with a strong and loving relationship with the [finer when possible, as varied as possible] magic arts of fermentation and distillation. So anyway I stopped, just over three weeks ago. I do miss it, just like I miss ibuprofen - I hate my ailments, I tell you.
Except that spring has sprung and I'll give that its own post really soon, I guess that's the simple stuff.
For this entry I'm going to talk about where we are in my kid's situation. They got sick in 2019 with a virus we all thought was covid which turned out after very thorough blood tests to not have
been, and was also not EB; we're assuming flu but we may never know. Probably flu though. After three months of horrible illness which kept seeming to wane and then came roaring back, which should have been better investigated at the time and would have been if we and the doctors weren't convinced it was covid because it was during that first period when everyone actually took it seriously and it was freaking everywhere, they got "better", but their strength didn't return. They should have rested but the system meant they had to do the exact opposite; the idea of going through an extra year of high school was understandably abhorrent to them - they're autistic and it was all awful, especially after covid started - so they pushed hard to do two years in one so they could graduate. The doctor sent them to physiotherapy too, during that period, and everything got worse. For their independent psychological symptoms, which they'd had for a long time, EMDR was tried and made all that worse too. Overall a bad bad scene. At the end of which we were able to get the doctors to start a new bad bad scene, a necessary one: the Diagnostic Period.
For months and months they got worse and we sought answers. At one point everybody was pretty convinced it would turn out be be MS or ALS, but a gruelling 2-hour MRI with an insane amount of injected contrast fluid
said otherwise, as did electromyography - but that revealed that there is old nerve damage, which has patched itself up. Lung function tests document impairment there too. They went from being able to walk for kilometers to a wheelchair to leg paralysis (a week now, supposed to be temporary; the mutism is, and lasted ten days the first time but never a full day since). I know that last point because we know now what it is: Motor Functional Neurological Disorder and I am an excellent researcher. It's a diagnosis of exclusion but it is a diagnosis, and it opens doors. Doors that don't fit us well, doors we're going to have to force and warp to get this case through, but definitely doors.
Treatment is complex and has a 70% chance of helping, to any degree. The tools available to us need to be played with. First of all, the system demands that we start with EMDR and graded exercise therapy, which both statistically and in our case make things quickly worse, but since we already did start with that and found that out the hard way, we can skip to step two. Which is a multidisciplinary team.
Neurologist, physiotherapist, psychiatrist, ergotherapist. Well, the neurologist is fine but seems very hands off: we do not feel guided. I'll be contacting her about options: does she want to guide us more closely? Would she prefer to send us to someone
who specializes more in this, or to a whole specialist clinic? And there's another rub. The clinics don't operate on wildly flexible hours and my daughter does. Even when they do have a relatively stable circadian rhythm for a bit, it's usually a nocturnal one. So we need to have ambulant care for the hands-on stuff, and we have to find a psychiatrist who is experienced in this, someone who can work with my daughter who has very specific psychological-care-related traumas, and work online or come here. An excellent ergotherapist we already have, but she does coping-with, not treatment. Physiotherapy will be hard to get because all the people who do the specialist neurophysio work are employed at those clinics. Sylvana can't stay somewhere anyway because places can't accommodate their dietary needs. The FND has also engendered an eating disorder: they can eat [again now], but barely enough despite very much wanting to eat a lot, and can only tolerate a few things which vary from week to week or day to day.
There is one thing we can do from here and I've researched it extensively now. Neurofeedback for restoration of motor function in all kinds of situations has shown good statistical success, and can be done with a home apparatus. I've found a lot of excellent source material, primarily recommending an alpha/theta protocol. I intend to start doing what the ergotherapist called "passive reintegration" by gently manipulating their legs and arms while using the alpha/theta protocol.
Our general practitioner and ergotherapist are enthusiastic about trying it. We're about halfway to having the machine; just need to raise another hundred and fifty bucks. If we don' have that somehow before then, I can use the bulk of next month's Patreon money (those amazing folks have got us through a number of squeaky periods).
On the practical side, it's been a fight and a long road but, with the help of a kindly contact person of skill, we finally have an electric wheelchair with a joystick, a perma-loan quasi rental from the municipality. A stairs lift (under the same scheme) will be installed in a couple of weeks. Now that they have the electric chair we can get out more, weather permitting, as I try to let my wrecked cervical nerves recover from pushing the clunky loaner around for hours at a time on jinky Dutch pavements. With the diagnosis, we were also finally able to apply for them to have their own disability pension, so some of the worst pressure has eased now that I don't cover all their insurance costs out of mine, and they can do things they never could before like get the occasional video game or sweater or ice cream (one of the things they can almost always eat, which is a relief because most of their favorite things are sadly not on that list).
So this has been the most-consuming thing thing, and also my health issues, and my husband's, and the taxes fiasco and the other stuff. You can see I've been on the utterly wrung-out side for a bit now. I'm going to sign this off here. I hope you'll look at the cartoons and I hope you'll help them get to people who need to see them. I hope you are having a wonderful spring, and I will share mine with you soon. Be well, and walk in peace.
Please enjoy this short video of birds on my garden table.
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