a whole nother joint and several hours later, i can move and managed a shower! now to eat breakfast and then probably rest again. I've got schoolwork to do, laundry and dishes piling up... i will do what i can do today #spoonie#chronicillness
Hey! 😊 So, my partner and I have been together for 7 years. He’s at a job right now where he has insurance, but it’s a very unstable industry; he could be let go at any time, with no notice. #letusmarry
His insurance is crap; my medical costs over the next few years could potentially bankrupt us both if we got married. He makes decent money now, but not enough to financially support two people—one of whom is very sick—especially if he loses this job. #letusmarry
According to one neurosurgeon, my 2012 MRI (the self-same that my neurologist used to diagnose me with conversion disorder/hysteria) shows very clear signs of intracranial hypertension, most notably a pituitary gland that has been flattened into a pancake.
So when in #unrestfilm I say, "I can feel my brain pushing out my eyeballs" that is apparently true.
Of course I have been saying this for years, most notably when at the @GlendaleHosp ER last month, where I was diagnosed with "anxiety" and torticollis (tilting of the neck), even though the issue was that my neck COULD NOT TILT.
Sorry I had to shout but I sure didn't hear when I was one of the abled folk. I did what I THOUGHT would help, but in reality, I had to stop going to my favorite events, to protest, to marches because they are NOT ACCESSIBLE to me. #SpoonieChat
a9. Example of when an event is somewhat accessible but the instructions are not so much. I pointed this out and got dragged for it of course. #spooniechat
So after being in bed for almost 2 weeks with my foot elevated post-surgery, hubby & I had date night at the movies. We saw #ProudMary and loved it. We went to one of those movie bistros so that I wouldn’t have to do too much. BUT...1/? #spoonie
As much as our communities have become more “accessible”, they really haven’t. Let’s start with the walk from the car to the theater using my knee scooter. This is a new development and someone thought offset brick was a good idea. It ain’t 2/? #spoonie
Offset brick means that every 3 steps, the wheels of my scooter get pulled in the wrong direction. My crutches were even worse as the unevenness meant walking was uneven so scooter it was. But that’s not all. #spoonie 3/?
Today I'm going to tweet a bit on #mypainday about my experience with chronic pain, bc I think it can be hard to understand if you don't have it.
I'll add some drawings from my pain sketchbook too. Because pictures! ✏
I have chronic pain because I smooshed 2 arts of my spine - the lumbar part at the bottom, and the cervical part at the top (my neck). This affects the spinal nerves that control my legs + foot, & arms + hands. So those are the parts that hurt.
I manage my pain with the smallest amount of medication that is still effective on any given day, physio exercises, psychological exercises, & a supportive partner #mypainday