Ray Asher

I guess I forgot to post this here but, they found the faulty genes. It IS FMF.

They did this with me once, a medication with the same main ingredient but a formulation that worked in a different part of the body.

One of the worst parts of having FMF is the prodromal period when you’re stuck wondering “Am I having another attack or am I overreacting?”

I was not over-reacting.

Thank fuck for prednisone. Just waiting for it to kick in.

#rarediseases #chronicillness

If you wanna know what it’s like to get diagnosed with a rare illness in the US I got this message this morning.

I gave my sample a month ago. The test is supposed to take 14-21 days.

I dunno. The fact that they gave it as intervals of 7 makes me think it’s week weeks and not work weeks.

That feeling when your genetic test is supposed to take 14-21 days and it’s been 24.

#chronicillnesslife

I can’t qwhite put my finger on it.

Amazing.

@chronicillness.bsky.social make my dreams come true 😂

Golden doesn’t shock me one minute. I’m so grateful I’m in ME-1.

Jeffries hurts.

Please meme my dumb child. I took these photos of her when I moved a desk. She didn’t like the change.

#cats #kitties

—when I turned down spaghetti carbonara.

It took me not eating for them to realize I wasn’t just complaining.

We’re not believed because other people can’t imagine what it’s like. And our pain is written off as being unpleasant.

I told my family not to make me laugh because it hurt to breathe.

I was wearing a dress because I couldn’t stand pressure on my abdomen.

It didn’t matter what I said because they couldn’t fathom what I was feeling on the inside.

They finally realized I wasn’t well—

OP at 17, wearing a yellow dress, sitting on a small ledge at a cathedral in Venice surrounded by standing tourists.

This photo sums up what it’s like to have a chronic illness.

My mom snapped this photo of her sullen teenage child being cranky.

I wasn’t cranky.
I was in pain.

… and their “formulary” suggested medication with the same generic name.

Except, it was formulated to work in the colon, not the small intestine.

It’s almost like insurance companies are practicing medicine without a license.

During my long autoimmune journey, I spent a period of time misdiagnosed with Crohns.

During that time I was prescribed a medication that was formulated to act in a specific part of my small intestine.

UnitedHealthcare denied that medication…

oh this is bad. far right dictatorship is back on the menu. welcome back Syngman Rhee

TWO percent of voters saw "issues related to transgender people" as one of their top three issues and Kamala won them by nearly 40 points. The narrative around this issue is backward.

No wonder I’m tired all the time —
I have anti-mitochondrial antibodies.
—my body is literally attacking the powerhouse of its own cells.

Be my pal, Austin!

Honestly. I just want to pee and leave. That’s the only reason I’m there.

Gonna need to find a new doctor because my current one won’t adjust vital medications because I’m on T.

Remember

Don’t give money to the Salvation Army

Not one thin, red cent

The doc insists that my testosterone is the reason my liver is getting worse… even though most liver damage from T comes from much older oral meds, not injections. And I’m on a relatively low dose (50 mg/week).

Medical Transphobia Update:

One of my doctors is resisting putting me on an add-on treatment for my liver disorder because I’m on T.

Mind you my untreated liver enzyme levels from last year are the same as my *treated* levels this year.

Today is a good day to learn more about @workingfamilies.org

The working class includes Black people.

The working class includes trans people.

The working class includes indigenous people.

The working class includes women.

The working class includes seniors.

The working class includes disabled people.

I really am tired of people who cannot comprehend that the dose makes the poison fearmongering about what is in our food supply.

The nomination of Gaetz for AG should establish once and for all that Republicans have a bigger problem with kids being trans than they do with child rape. They view teenage girls as sex objects and want to ban transness because it reduces the number of teenage girls they can use as sex objects.

As a 36th birthday present to myself I decided to come back here lol.