I’ve used the analogy of taking my health on as eating a whole elephant one-bite-at-a-time. I forgot to mention that the elephant is still alive, moving, and fighting back.
There has been a lot happening lately. There’s been a lot to process, plan, and problem solve. It frequently seems like the more I need to do, the fewer spoons I have to do it.
According to recent MRI’s, it’s not MS and I don’t have a CSF leak. Research says there’s a chance that these findings are wrong- MS can be in your spinal column, and not show up in the head/neck- CSF leaks are missed- but for now we’re going to cross these off the worry list. Dr. Handjob also assures me that the microhemorrhage is “usually benign.”
I’m still having symptoms though. The test being negative didn’t make the problem go away.
I have another MRI next week, for my lower back. This is necessary in order to pursue more extreme pain control measures. Life is pretty brutal when the drugs wear off.
My work hours have been reduced. I find myself floundering at home, not knowing what to do. The things I want to do will make symptoms worse, and the whole point of cutting back the hours is to get the symptoms under control. I feel guilty when I use my spoons off-the-clock. I feel guilty for having nothing left for my family. I feel guilty because I’ll be making less money. I feel guilty because I might make too much money to keep my Medicaid. I feel guilty when I have a good day. I feel guilty when the drugs are working. I feel guilty when I have nothing left. I know better, and I still feel guilty.
I feel guilty because I haven’t gotten this all figured out yet. I feel guilty because I used to have some of this figured out, but didn’t know why, and couldn’t defend it enough to keep it up. Health is experienced socially.
Bites I’ve already taken
I realized that something was going on in my body, researched the heck out of it for years, and have explored a variety of dietary options in addition to moving my body as much as possible given my obligations and my pain.
I initiated the medical oversight of my worsening pain. I take my meds religiously. I do a fully yoga routine at least once a day (or I really can’t use my body much at all). I use an amazing CBD cream, a CBD/THC salve, meditation, breathing, pressure points, showers, heat (cold hurts me!), and good old fashioned dissociation for my pain. Sometimes I smoke CBD but it’s pretty nasty. I smoke a lot of pot, never get high, and can function well for about 45 minutes after I smoke.
I’ve had 3 X-Rays, 2 MRIs and I have another MRI next week.
The Next Bites
I’m going to start micro-dosing mushrooms. Thankfully I live in a state where mushrooms have been decriminalized for personal use.
It’s looking like a lot of the pain is structural, and not super treatable. The scoliosis for example- I think my highest Cobb angle was 16*- Dr. Handjob says that a Spine Specialist won’t look at anybody with less than 40*. It doesn’t matter that being hypermobile exacerbates these structural problems.
I’m currently trying to get into Physical Therapy. I was referred to a PT that specializes with people with hypermobility and they don’t take my insurance so I can’t go there. They don’t take my insurance, which doesn’t pay for jack anyhow, and Medicaid has had to consistently pick up the bill. My insurance costs me $130 every two weeks, and it’s keeping me from the PT that I need.
‘Merica
So I’m working on getting into ANY physical therapist. I’ll see if I can film my first visit.
I want to get back into therapy-it’s time consuming. I want to seek out acupuncture and things I haven’t even thought of yet.
I’ll keep pursuing all of this, but I also need to start doing better and doing more (I know, I know- I also have to do less. It’s complicated).
I’m eating foods I shouldn’t be. Specifically, Splenda, heavy whipping cream, coffee, coffee creamer, low carb tortillas, Slim Jims, and nuts. I also need to cut back on the cheese.
These are all inflammatory in my system. Inflammation is a trademark of hypermobility syndrome. I’m already taking a heavy duty anti-inflammatory, but I need to stop putting these things into my body.
Have you tasted coffee? (Hold on, brb, I gotta go fill up my cup…)
I’ve lived without coffee before. I know it makes me feel better. I know that when I was dishwashing and my carpel tunnel syndrome was raging, coffee (and the Splenda and creamer I put in my coffee) made a tremendous difference in the severity of my symptoms. I suspect that this move alone will dramatically reduce the severity of sensations in my arm- as I expect that these symptoms are impingement related, given their similarity to the carpel tunnel sensations, and the EDS propensity for impingement related issues. This is easily as big a deal as taking my meds every day, or doing the yoga. Today’s bite is that I’m no longer purchasing coffee supplies. I can take my time in the supplies I have on hand until I run out. I think it has to be forever this time, and I’m sad. I think it’s utterly ridiculous that I’m sad, but I’m sad.
There is still so much to be said for Humans Healing Humans
Low carb tortillas- my easy food, my always good and consistent food. Have you ever seen the autism meme about “picky eaters” that explains that a blueberry might be juicy, or squishy, or bitter, or sour – but a Cheezit is the same every single time? Low carb tortillas are that food for me. It doesn’t go bad the way lettuce mix does. It doesn’t overcook the way a hamburger patty or chicken breast can. It’s comforting every single time. The texture is SO GOOD!!!! Leaving it behind requires time and spoons for food prep. It’s hard to stand in my kitchen for very long. Cooking uses my arm. This one is going to be hard but I need to be free of this. The number of them I eat stacks up my daily carb count (which doesn’t matter for everyone, but it 100% matters for me). My colon needs me to knock it off with the gluten already. At least the floor under my desk will be cleaner (they get flaky af when placed in the air fryer…). This is trickier, because I’m not the only person who eats them. So I have to keep buying them, or make other people go without them, and that’s really not how I work. I’m giving myself one more week- to get a food plan in place, and adjust the groceries to accommodate this.
A lot of cheese goes away with the low carb tortillas. The Splenda, creamer, and whipping cream all go away with the coffee.
Nuts and my bite of the James… my snacks that don’t make a mess, are portable, and dry. Also snacks that the whole house snacks on. This one is just gonna be will power- I’ll drop the nuts tonight- the Tiny Jims have one more week in my life.
It seems like an easy list to walk away from. Coffee has been my desert replacement for better than a decade. This leaves me with sugar free gelatin. At least it’s yummy, but it’s never what I want to pick.
I guess at least I know which direction the elephant is heading… I’m hoping to get it to fight me less. Maybe if I wasn’t trying to eat it…
I have to stop working against myself.
Operation **Reclaim** Loveland 
What do you think?