Hello there, dear reader. I apologize for abandoning my books and blogs, social media and email contact having shrunk to the bare minimum.
I cannot see well now, one eye blurry, and other parts of my face affected. So far, I haven't been able to get any medical care whatsoever in regards to that. Supposedly, a neurologist is sending me to a neuro-ophthalmologist. My regular ophthalmologist didn't think it necessary, apparently, though I asked.
I'm what others deem as a lost cause, juggling health problems for most of my life, trying to get a reasonable diagnosis. I got a basic diagnosis a year ago this September. It's not good, but it's not lethal (in my case), and for that, I'm grateful. I had to travel out of state to get it, since my state health care is largely useless.
Unfortunately, Ehlers-Danlos Syndrome comes with a whole host of comorbidities. I landed a doozy in the genetic inheritance arena. One of the worst aspects is that the medical "miracles" pharmaceuticals can claim in others don't apply to me. I can't use them majority of drugs others take for granted, including analgesics. That means the full body potential for injury goes without much pain relief. Headache? I can't take acetamenophen or ibuprofen. Chronic tendonitis? Again, no OTC or prescription anti-inflammatories. Steroids and certain other collagen-affecting drugs are blacklisted. EDS patients are patient. Adaptability is a keyword; most of us have learned to adjust both outlook and expectations accordingly.
Every day, I see and hear ableist commentary. The sad part is, unless you have EDS or know someone who does, we all appear "normal" at a glance. Most doctors don't have a clue what to look for, either. It's hard getting medical support. Telling someone "It's just fibromyalgia!", "You're just lazy.", "Have you seen a therapist about your pain control expectations, or have you gone to a pain management clinic yet?" is the same as accusing someone of being a hypochondriac. It's verbal and emotional abuse, and completely wrong.
The pain is brutally real. Collagen is the glue that holds body tissues together. It's in every body tissue. As such, there are currently 13 overlapping types of EDS; every patient is different, often wildly so. I have a hypermobile type (hEDS), and as such, I have body bracings for about every braceable joint. None of my joints are unaffected. Nor is this the worst type: Vascular Ehlers-Danlos (vEDS) can be and often is, deadly.
I've dealt with aspects of this illness for nearly 59 years. I was told my pain was "normal" and so walked on subluxated (partly dislocated) feet from the start. That's a long path of pain. When my left knee subluxated walking down my hallway at home, I lay down, jammed it into the spokes of our bed's footboard, and yanked hard on the headboard... and painfully popped it back in place. No one was there but me, no phone, no help. I had no insurance and no medical care. My knees don't look alike, and now they never will. That was about 35 years ago.
Nor will comments like "Eat more fish. You'll feel better" or "Lose some weight. It'll help your arthritis." or "Just push your plate back." fix anything. Sure, I'm overweight. One of my comorbidities is being the next best thing to a Celiac patient, with sensitivities to wheat, barley, and rye, and a complete intolerance to gluten. Food sensitivites cause edema and weight gain. I have multiple food sensitivities and intolerances, and must eat something. It's a catch-22.
My old lifelong primary care told me, "You don't have edema. You're just fat." I lost 17 pounds the first weekend, when I went on a Celiac-safe diet. 35 pounds, total. I no longer believe the for-profit medical industry in terms of my own health. I do listen to serious healers among them.
Those "miracle" drugs have introduced me to new worlds and new words, among them a hard-earned pharmacophobia, presumably medical PTSD, along with dysautonomia, mast cell activation, and a lot more. The blowers of smoke get what they deserve verbally and when I don't return to fill their pockets, not because it's right, but because self-defense is legal.
I'd love to resume writing. As it is, I struggle to see my phone screen, a scant 3 inches in front of my nose. It will have taken several sessions for me to get this written. I don't own a printer, and we're struggling to get into better, more viable housing. Our dreams of off-grid life went down the drains with the inability to work or attend college. There are more problems than solutions. In short, supporting other writers has been a priority for a long time, my own ability to function pushing other efforts aside. I rarely do visual artwork or photography (can't see).
Please don't be that person who thinks "there's always a way", says so, and then shuts the door on opportunity for the disabled. That's what state and federal government have done from even before the Covid-19 era started. (Both wings!) It's difficult for fit people to live on poverty level income; if you have to buy almost everything (special/mandatory/expensive foods, certain clothing items, extra braces, alternative remedies, etc.) out of pocket, it's downright impossible. Doing it without doctors fully conversant in your condition is murderous.
I'd love to return to work as a farm worker... or pretty much anything else not requiring technological, environmental, or other adaption. I'm a client of the state Department of Vocational Rehabilitation, which fobbed me off on the Department for the Blind, then went dead silent. I need income, and would far prefer to work for it, as I did before. Instead, what I have is a donations link. At least it's not GoFundMe or Kickstarter, like so many disabled authors and artists must use. I am ashamed, nonetheless, to be using a state-run version. That shouldn't be necessary.
If you can help, here's the link.
Thank you for caring. If you choose not to help me, then help someone else, if it's just the little old lady who lives across from you who can't get groceries. I know how she feels. Please. Just be a good person to someone out there. Pay it forward. It doesn't have to be for me, ever.