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pain: chronic / words: iconic

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chronic painHealthcare / MedicineLife with chronic painMedical cannabisPersonal experiencewriting

Happy 4/21- Why I Didn’t Write About Medical Cannabis Yesterday

by Janet Jay April 21, 2022
written by Janet Jay
On a white background with cannabis leaves around the bottom and right edges, text reads "Happy 4/21-- why i didn't write about medical cannabis yesterday, janetjay.com"

Happy 4/21! I didn’t write about medical cannabis yesterday, even though I wanted to. Why? Texas, mostly.

On a white background with cannabis leaves around the bottom and right edges, text reads "Happy 4/21-- why i didn't write about medical cannabis yesterday, janetjay.com"

Listen, I’m happy that my sister in Seattle can walk down the street and buy anything she wants. (Really! I am truly thrilled at the spread of legalization, not being sarcastic.). But even though I’ve been in constant joint and nerve pain since I was 15, I can’t. I’m so glad my colleague’s state has such a thriving medical cannabis program that she’s fighting over things like insurance coverage. But there is no medical cannabis program in my state whatsoever. (“Medical marijuana” with no THC doesn’t fucking count. CBD alone does zilch for some people.) This means that anyone with chronic pain who wants to use marijuana for pain relief has to chance telling their doctor about it, and possibly losing that doctor, or not telling their doctor, technically breaking their ‘pain contract,’ also potentially losing that doctor.

I didn’t write about medical cannabis yesterday because it doesn’t matter if it helps your joint pain or muscle tightness more than anything else. Opiates or marijuana?  I certainly hope they don’t help you in different but still significant ways, because from everything I’ve heard from people in states like mine, it usually comes down to choosing one or the other.

Even if cannabis helps you take fewer opiates, it doesn’t matter. We’re not in the land of logic anymore. Even when doctors refuse to treat people who use medical cannabis, they no longer attempt a medical argument for the decision. Because there is no valid argument for keeping marijuana Schedule 1. That means “it has a high potential for abuse, no currently accepted medical use in treatment in the United States, and a lack of accepted safety for use under medical supervision.” Under current federal law, marijuana is more dangerous than cocaine, meth, or oxycodone.

Sure.

Vintage "Nancy" cartoon with her sitting in bed, saying "I've never been so frustrated in my whole life!"
“Nancy” panel from Ernie Bushmiller’s Nancy’s Aunt Fritzi Ritz

I didn’t write about medical cannabis yesterday because depending on what version of it you prefer, it’s a felony with a lot of jail time in my state. Prefer vaping or edibles to ruining your lungs by smoking flower? According to Austin law firm Guest & Gray: 

“Any edible or THC vape, no matter how small, is a felony in Texas. One THC cookie = felony. One THC vape cartridge = felony. It’s not like regular plant marijuana, where they have to show a usable quantity either. Any amount is enough; one crumb from your pot brownie = felony. Less than one gram is a state jail felony, which is the same penalty Texas has for meth, cocaine, and heroin. That’s right, the geniuses who wrote our state’s weed laws made pot brownies the same penalty as crack. Great job, guys! For an edible over 1 gram but less than 4 grams, the offense is considered a 3rd-degree felony. That means you are looking at 2-10 years in prison for EDIBLES.”

Prefer concentrates/dabbing? Also a straight felony! All forms of THC concentrates are illegal in Texas. And of course anything involving the mail is, you guessed it, a big honkin’ felony. That’s not even starting on county-by-county legislation.

Texas policy in a nutshell: Vape? Go to jail. You want some extract? Go to jail. One gummie? Right to jail.

Republicans are mostly to blame for this– Texas’s ridiculous laws are almost entirely based on Greg Abbott’s political maneuvering and bootlicking. But Dems have plenty of blame here too. Biden promised to– and could at any time!– change this landscape completely. It would be a massive win for Dems and polling shows widespread support on both sides of the aisle. Sooooooooo…

Snip of twitter post by 
Holding Biden Accountable @WaitingOnBiden
Happy 4/20! Today is the 456th day that Biden has refused to fulfill his cannabis campaign promises, which are still up on his website, hand emoji pointing at snip from website:
BIDEN
 HARRIS 
DEMOCRATS Decriminalize the use of cannabis and automatically expunge all prior cannabis use convictions. Biden believes no one should be in jail because of cannabis use. As president, he will decriminalize cannabis use and automatically expunge prior convictions. And, he will support the legalization of cannabis for medical purposes, leave decisions regarding legalization for recreational use up to the states, and reschedule cannabis as a schedule Il drug so researchers can study its positive and negative impacts.
6:00 AM - Apr 20, 2022. Twitter Web App
What the actual fuck, Dems.

I didn’t write about medical cannabis yesterday because in places like this, it can bite you in the ass. Someone I know was recently sent to a cardiologist. They mentioned cannabis use because they had read that it could affect heart rate, and the doctor noted it in their chart. When a different doctor saw it, that person ended up losing the pain management doctor they had been going to for half a dozen years. Despite saying it in confidence. “Always be fully truthful with your doctors” is usually the correct approach, but I don’t have the luxury of thinking it’s always true.

I didn’t write about medical cannabis yesterday because I don’t know what my future holds. I have to keep my options open. 

Happy 4/21. I’m truly happy that the landscape has changed so much and that most people can now access this vital medicine. But there are a whole lot of people still out here suffering. 

April 21, 2022 0 comment
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chronic painMental healthPersonal experienceWeight & chronic painwriting

Chronic Pain, Weight, and The Challenge of Getting Through The Damn Day

by Janet Jay May 13, 2021
written by Janet Jay
Chronic pain, weight, and the challenge of getting through the damn day
Chronic pain, weight, and the challenge of getting through the damn day

One thing that can be really hard to communicate to people that don’t have both chronic pain and weight issues is that it’s not just about hurting all the time,  it’s about the pain taking up so much of your being, so much of your energy, and so much of yourself that you just don’t have enough to deal with other things. Stuff like anger, stuff like weight gain, stuff like frustration, stuff like anxiety–  it’s all tied in together. It’s so, so much easier to keep your temper, or to keep from complaining about something, when you don’t have 90% of your self tied up in just being there and being out in public and interacting with people like a normal human being for a little while. It’s so much easier to eat healthy food when you’re physically able to stand at a stove to cook without it causing you worse pain, when you can walk around the grocery store and choose what food looks good. Because guess what: as much as we like to Protestant-work-ethic our way into “all you need is to work hard and believe in yourself,” it’s just not true. There’s only so much a person has to give; there’s only so much energy and self that a person can bring to a day. Can you rally and push through? Of course, but can you do that every day? No, absolutely not, and it shouldn’t be something that you try to expect of yourself.

Seriously, you should read about spoon theory! Click to read the essay that started it all

Pain, Pressure, and Pizza

I love tacos!! (and pizza) Too much!
It’s true. I do.

So when, again, 90% of yourself is dedicated to just getting through the day and doing the things that you need to do,  it’s so much harder to bite your tongue, or swallow a criticism, or to say, “I’m gonna force myself to eat a salad even though I hate salads” than to just say “fuck it I’m gonna order a pizza because my life is miserable right now. I know it is not good for me but damn that moment when I first bite into it sure is amazing no matter if I’m hurting or not.” And sometimes that’s all there is in a day, when you’re hurting so bad you can’t even sit up to watch TV, when it’s just a haze of pain flowing through the days and weeks like molasses. Sometimes that ten minutes of pizza is the best moment you’ll have in the day. Few people deal with days that shitty on a regular basis. They don’t get what our lives are like.

Weight as a function of pain 

When my pain and depression and anxiety were at their worst, I gained weight. When I finally found treatments and medication that helped enormously, suddenly I had more energy to spend on exercise, cooking, and trying to change habits in the long term. And I did! I’ve lost a lot of weight! It absolutely wasn’t easy, and certainly involved willpower and tough choices, but at the same time, it’s SO much more doable than it would have been when I was at my worst. People without disabilities have a hard time with weight loss, even with the full spectrum of exercise at their disposal. Take those options away, and obviously, you’re going to have a harder time. Adding a chronic condition on top of the normal weight loss struggle completely changes the equation. (And that’s true about things other than weight: take anything already difficult and combine it with chronic pain and it’s more than the sum of the two, it’s more like chronic pain acts as a multiplier. Weight loss squared. Temper keeping to the third power. …OK maybe not but you get the point. ) Forcing yourself to exercise is one thing, forcing yourself to exercise when you know it’s going to make you hurt more in the short term is entirely another.  

It can feel like drowning to think of all the things you know you should do, and it’s even worse when you are dealing with other stuff like depression, anxiety, and ADHD on top of your pain (like somebody I know whose name is Janet).  There is a path through the worst of it, but it’s a path that those cruel fat-phobic people have never even thought about, much less had to walk. People like that fundamentally do not understand what it’s like to be you or me. They don’t know what it’s like to trudge through a fog of pain, where every single thing you do requires effort, energy, exertion, and expenditure of pain from your finite supply.

There are some pretty great free image results for "drowning"

Pain, Weight, Jagoffs, and Finding Support 

“Weight and chronic pain” or just “weight and health and the medical establishment” is a huge issue that I’ll write a larger piece on someday– there is an enormous amount of prejudice and misinformation out there about weight and health. But until then: 

Please don’t let ignorant assholes make you feel bad about your weight or appearance.  Hating on fat people is one of the few semi-“acceptable” hates left out there, and some shitty people latch onto it. It can be incredibly hard to read some dude on Reddit screaming about CICO (calories in, calories out) and how you just need to get your ass off the couch.  But it’s important to remember that most people in the world are not like that. There are people who understand. There are people who don’t understand, but who are kind and who will listen and learn with empathy. You have to surround yourself with those people and treasure them when you do find them. In some ways, that’s just part of being an adult, but it’s so much more important for someone with a chronic condition that can frustrate efforts to get out or make new friends. I would have never gotten through the last few years without the help and support of close friends who just happen to live all over the globe. When the world around you sucks, create your own world. 

 

May 13, 2021 1 comment
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chronic painPersonal experiencewriting

My Life In Pain (TL;DR version)

by Janet Jay September 21, 2020
written by Janet Jay
Typewriter with paper in it reading: my life in pain: tl;dr version, janetjay.com

Who am I? Where do I come from, what have I been through, and why did I start this blog? I tried writing it out and it’s a damn novel. So I’m going to see how bullet points work out to get through it all.

Scan of Janet jay's spine, janetjay.com
I wish I hadn’t work a Victoria’s Secret bra the day this scan was taken…
  • Started getting dizzy at 14: nobody could figure out why
  • Hurt my neck playing soccer and hurt my neck wakeboarding, but walked away from each
  • Fall of sophomore year, began having horrible tension headaches that turned into debilitating migraines 
  • Mom took me to her chiropractor, who over-adjusted me and sent my whole back into spasm
  • I’ve been in constant pain since that day
  • Started going to doctor after doctor
  • Nobody had any idea what was wrong
  • “You’re too young to be in this much pain”
  • Kept going to doctors
  • Got depressed
  • Did PT that made pain worse
  • Did therapy that made depression worse
  • Started grasping at straws; tried one “alternative” or “complementary” treatment after another.
  • Biofeeback helped, a little.
  • Went to special doctors, special hospitals (Johns Hopkins, Scottish Rite Hospital for Children), still no diagnosis
  • “You’re too young to be on pain meds”
  • Did (water-based) PT that helped
  • Tried to plan a life in pain 
  • Went to college at Carnegie Mellon in Pittsburgh
  • The head of Pain Medicine at UPMC had no idea what was wrong either
  • Moved to Knoxville, Tennessee in the middle of the opioid panic
  • Learned to jump through hoops like a damn pro
  • Moved to Austin, Texas
  • Kept jumping through hoops
  • Got worse
  • Continued worse
  • Stayed worse
  • Finally, in my early 30s, something showed up on a scan: a bulging disc was rubbing against a nerve
  • Doctor brought up the idea of an implantable spinal stimulator
  • Became a cyborg; it helped some but not as much as I wish it did
  • Wrote about it for Popular Science
  • My L5-S1 herniated and I ended up in the ER, screaming
  • Emergency laminectomy
  • For months I couldn’t climb the stairs to get to my bedroom or pick something up off the floor
  • Got back to my normal crappy baseline, more or less
  • Landed an amazing part-time job doing communications work for the U.S. Pain Foundation
  • Switched pain meds from a lot of Schedule 1 stuff to Belbuca, a buprenorphine medication that’s schedule 3
  • Dropped from a constant 7-8 to maybe a 5-6 on the pain scale
  • Decided to start a blog

And here we are! I’ve now spent the majority of my life in pain and have spent 20 years learning to talk the doctor talk and walk the medical walk. Stay tuned to this space for all the doctor tips and tricks I’ve spent most of my life discovering, and some of the feels and fears I’ve uncovered as well.

my life in pain: tl;dr version, janetjay.com
September 21, 2020 0 comment
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