I don’t have any interest in it to be honest. I don’t care if others use, but it’s never been for me.

So I just do the best I can to stay healthy and minimize the ill effects of my poorly constructed Frankenstein’s monster body.

There's an argument to be made that if you're gonna be in pain regardless, you might as well have some fun as well. And that's a fair enough argument, I just wish weed was couched in those terms instead of the constant "it will fix you" line...

Well first, a person must live in a place that isn’t trash. So, Tennessee won’t work.

Very much so.

I’m a party pooper. I’ll just sit here dealing with my lifetime of chronic pain and all those well meaning types can get blitzed on whatever they want.

Are you speaking from experience, or is this just wishful thinking?

<rant>

It's fairly effective for some very niche things, like specific types of seizures, limited pain management without the impact of opiates or the ever popular "getting cancer patients to actually eat something". Unfortunately people tend to forget that in those cases it's a prescription medication, and that weed isn't some magical exception where self-prescription of strong psychotropic drugs suddenly becomes a good idea because of it's inherent groovy properties. Counter to the widely held belief, weed can indeed have unpleasant or downright dangerous side effects (ex: in my case it's a reliable trigger for my seizures, which makes constantly being recommended weed to treat my seizures Very Tedious) and it's not a good idea to prescribe it without exception.

It's a perfectly fine recreational substance, but much like alcohol just because it's used recreationally doesn't make it safe.

</rant>

Was surprised to hear that come from my father. And I would have gladly tested it if I hadn't heard a ton of anecdotes that it doesn't work or might be harmful for our case.

Missing the "have you tried using marijuana" people, imo the most irritating. At least the essential oils smell nice.

Is that salami organic?

"Do you eat wheat gluten?"

I just want one of my diagnoses to be normal and not both rare and underresearched, tyvm.

You mean it actually filters without conscious effort for people?

100%. I have had Crohn's since I was 15. I had ten inches of my small I testine removed at 16. Managed to hold it in check with double the normal dosage of Humira until I was 36, after years and years of trying different pills. The, the Humira stopped working. Basically, every moment of every day was some level of pain. Ranging from being punched up to being stabbed.

Then, I started Skyrizi. And for the first time in my life since high school, I had no pain at all. It was damn near miraculous. I have severe Crohn's affecting both large and small intestine. And the last round of scans I had showed no active bowel disease anywhere. It astounded me every single day for a long time. I was suddenly a regular person. Pooping once a day and everything. I really don't think i could survive going back. Not mentally. Now that I know what being normal is like.

From our experiences it's how the appointments go the pharmacy insurance says no

"I still can't do anything for you, but insurance demands that I see you every quarter."

Yasss! Long covid sucks! Since 2022!

Hey, at least you get something named after ya.

Me to the malevolent djinn: I want to be famous, I want everyone to know my name.

Djinn: ::smiles:: granted, you now have a new and novel disease that everyone will soon have to study.

oof i just got put on methotrexate today

Phenomenal cropping

Methotrexate instead of steroids because docs think steroids have a greater risk, yet only one has ever killed anyone.

Ah, the (internationally widespread) corruption of decades ago is still on a repeat course.
Vague figures keep popping up again and again to lay claim on funds earmarked for solid and proven research only to divert the money to vague psychosomatic control programs that only serve to enrich those enforcing the non proven programs upon patients. That side still attempts frantically to ignore evidence of covid-19 overlapping simarities with ME/CFS

Definitely worth looking into. There are some risks to treatment, so it's not for everyone, but if you're immunoglobulin deficient it seems like probably the only real chance at recovery short of just riding it out indefinitely.

Apparently the link between immunoglobulin deficiency and COVID severity has been known for a long time. https://pmc.ncbi.nlm.nih.gov/articles/PMC8057306/

Even fully vaccinated and boosted there's a chance that you won't be fully protected if you're already deficient in the first place, and may need to have your antibodies monitored along with a tailored vaccine procedure to ensure you're adequately protected.

It seems like that's something that more people should really be aware of. I would have been much more careful about exposure had I known I was at a higher risk.

https://pmc.ncbi.nlm.nih.gov/articles/PMC9203263/

https://pmc.ncbi.nlm.nih.gov/articles/PMC12808491/

https://www.sciencedirect.com/science/article/pii/S1201971225002140