To be specific, no, I am not writing again. I am so sick of badly edited (both traditionally and indie published–not casting shade on either side) books, I could chew tenpenny nails. I can't afford to properly [re-]edit my older books, nor do I foresee being able to do future books. Personally, I'm not an editor; I'm just as blind to my own errors as most people. It's a spot I don't need to go dance in. Personal choice.
The fact is, I need a survival-level job. I have multiple full body health issues, not directly lethal, but highly limiting. I don't mind working, but I'd have to do it at my own pace. Not negotiable. I wish it was.
Nor do I have socially acceptable education; nine hours of pre-veterinary studies done mostly by mail augmented by self-provided doesn't fly. Basically, it's a case of "no registration papers exist for this 'gelding' for sale".
I'll be 60 years old next month, and no, I will not be taking out student loans to go back to school. Sure, my family is graced with longevity, but in my case, it's a bad gamble. Ehlers-Danlos Syndrome is progressive: my body, plagued with poor genetic collagen management, is aging faster than "normal".
No, there's no cure. Treatment at best is palliative: braces; preventatives; things like heat/cold, Tiger Balm™️, and so on. The [full body–every tissue is affected] pain, according to the research message board I contribute information on, meets or possibly exceeds that of cancer (I don't want to know for sure, thanks). This is my genetic 'normal'. I have to live with it, if I live at all–which I am and do, leaving little energy for petty arguments. I have 29 individual body bracings, to date, not all of which I must wear at any one time, and [expensive] compression garments are a huge help.
It took me 58 years to get a diagnosis out of state and out of pocket. Medicaid doesn't pay out of state (or for expensive genetic testing); since my primary care says Cleveland and Toledo, Ohio, are the nearest places for adult genetic medicine "care", that neatly lets me and every other person with similar problems out of options.
Insurance companies are every bit as ignorant as Kentucky's medical community in general. I've tried to get in to see the state's sole neuro-opthalmologist** for two years; they're taking appointments by triage only, with a huge waiting list.
I stay out of emergency rooms if at all possible: NSAIDs, steroids, quinoline medications are all generally forbidden, as they mess with collagen. Narcotics? There's not enough anti-nausea medication in the world to stop me from projectile vomiting. Bad idea.
I missed a great writer's workshop because of complications. Not all of us are bendy (no, it's not growing pains and I'm not "double jointed"). There are 13 decidedly overlapping types. My mother was the kyphoscoliosis variety, or kEDS; cause of death might be directly attributed to a lifetime of misdiagnosis. My sister had heart problems listed as cause of death–on the list of comorbidities–and "Fibromyalgia Syndrome"*. And so it goes. I simply dug deeper into my symptoms and family history than the average person.
The geneticist I saw said "Fibromyalgia Syndrome" * is Ehlers-Danlos Syndrome–with Dysautonomia and Mast Cell Activation making up a "trifecta" (there's a long list of rather nasty comorbidities). I now have a sacroiliac joint brace; I had to ask for it from a sceptical orthopedic doctor (he was thoroughly embarrassed and did apologize after I gave him a gentle but unadorned talking-to). It helps. I didn't have it then. A long road trip wasn't possible.
Many have pointed out that I could resume writing. Yes, I could. Sure, I have a come-and-go blurry left eye**, but I'm doing what I can to work around it on a nearly invisible budget (using an [obsolete] cell phone, mostly). Sure, I could... and I'd still have no advertising budget. Disability income for a married woman (forget the Americans with Disabilities Act and Equal Opportunity laws–they don't legally apply) is extremely minimal, especially if you lost your Social Security points due to long term misdiagnosis. Medical and social services PTSD is, I assure you, quite real.
I have an extremely limited diet now. It's expensive. A half-size loaf of Schär bread is around $6. No wheat, barley, rye, or even oats. Limited legumes. Almost entirely fresh food, which is actually a good thing if costly. Dairy had to go, too. Additives like xanthan gum, some food dyes... nope. I had to add salt to my diet with steady fluids, a direct opposite to standard and long term incorrect medical advice: POTS (a form of dysautonomia) isn't forgiving, and I must function at least minimally.
I lost a lot of weight gathered mostly due to undiagnosed food sensitivities and intolerances that do not show up on allergy tests. Elimination dieting works! The paraspinal muscle spasms and other neuropathy symptoms were apparently gluten intolerant neuropathy; I no longer get them [unless I encounter cross-contamination]. (Sharing a meal at someone's home or just any restaurant is problematic at best.) I don't complain, except when I pay for food...
Whoever promoted the 8.7% Social Security raise was worse at math than I am. Prices are up, and pandemic food aid was shut down. I can no longer access highly helpful medical massage, after Medicaid dropped it. It's costly to be poor.
Thank goodness for a merciful, fast, and understanding chiropractor (thank you, Dr. Allen!), who puts my routinely subluxated joints back for me [it's partial dislocation]. ERs aren't able to help, though I've learned how to manage some of it on my own, mostly wrist and finger joints. Popping larger joints back (try it on a subluxated floating rib! not for sissies) is awkward sometimes.
I applied to the Kentucky Department of Vocational Rehabilitation for job assistance, and after an obscenely long wait, was told what I already knew: "You have multiple and complex disabilities." No help there.
The OVR folks tried to set me up as a work from home customer service employee! I wouldn't last long; one day of brain fog plus severe pain, and I'd alienate customers quite handily. Also, no flexibility of schedule exists when there's a regular paycheck.
Not to mention "AW" phone service that's a dead loss after the LTE/5G "upgrades"–I'm trying to change companies. No internet access beyond cell data is not good. Our area, along with being an unsupervised playground for petty theft, is not politically profitable.
[NOTE: We can't really afford to live elsewhere. Also, no apartments or housing projects need apply; I can't handle that much human interaction.]
I've gotten dirty letters from various social services offices (gotta eat, kids), over 1¢ USD monthly dividends paid out on a prior bank account (that's a whole 12¢ a year!), been yelled at, and told I was a liar over $6 book royalty payouts.
I'm not even kidding. Nope. I'm too tired to wool with jokes.
We had a home once, built to our needs. It went away because of greed, plain and simple. Everything we had, poof. Requests for Reasonable Accomodation? "We don't have to." And they didn't, thanks to an Obama-era bankruptcy law. We checked and rechecked.
My faith in a "good" humanity is thin and narrowed by experience. Watching the sheer b*llsh*it blithely pandered about on social media doesn't help. I miss a good many of you, our discussions and exchanges.
Unfortunately, greed is real, and the myths of "trickle down" prosperity or justice in a world set to "let's flush away everyone who doesn't fit the standard" are more influential. Money can buy a measure of happiness, but it only works right if it's a shared happiness.
I got nothin', y'all. It's beyond my ken. Putting one foot in front of the other is about as good as it gets. I choose my battles these days.
Miracles aren't tangible. Going home is better than any heaven preached up by the holier-than-thou tribe. I'd be happier working at the things I _can_ still do, at my own pace, to stay reasonably fed.
⭐ Please don't offer platitudes and clichés. I've tried many things, some I wasn't ever comfortable with, like GoFundMe. They were all long-term useless. Not interested now. Thoughts and prayers are also intangible.
Here's my one suggested working cliché: "Be the change you want to see."
Stay safe, friends.
No comments:
Post a Comment