If you know me from elsewhere on the internet, you know I post a lot about Mast Cell Activation Syndrome (MCAS)
Mast Cells are a type of immune cell that contain a lot of chemical messengers, which they can send out to other cells to signal that it's Inflammation Time
In #MCAS, mast cells are overactive for some unknown reason, and they basically cause havoc
Today I want to talk about a genetic mutation that may cause MCAS
Please boost
🚨🚨100/1300🚨🚨
Behind on rent. I'm still in the homeless program and they've given me a couple days extra to get the back rent or I'll be kicked out. I got life changing news a few days ago and I'm months away from moving out of here and right on the edge of stability. Sick and disabled. Need housing for survival. Refuse to accept outside assistance
A "return to normalcy" is impossible in our current world.
We are in a pandemic world fueled by #ClimateChange that is causing massive fires, deadly warming of the oceans, mass extinctions, heavy pollution, record-breaking hurricanes and tornadoes and droughts, and we should be fighting against the "normalcy" that is allowing this all to happen.
All of these are CHOICES human beings made, and they can be fought against. We can CHOOSE to stop doing the harmful things, to do instead something that saves lives, that mitigates the pandemic and climate disasters to avoid further loss of life and biodiversity.
We can choose to do this. It is not impossible to choose to stop the cycles of harm.
But I don't know how to get folks to CARE about other people. To CARE about their own lives even. To care about the environment, which is also crucial to our survival.
And it's not my job to convince people to value life.
I tried so many times with various arguments from as many angles as I could think of, and shared it here and on other posts of mine, but some people just don't want to admit that their values do not include valuing the lives of others.
One of the most common arguments is masks.
Not wearing masks? That isn't at all like choosing tea or coffee. That's an ideological difference in how you value LIFE.
So people who don't mask regularly?
You are telling us you don't value LIFE. You don't value your own life even. Your comfort and denial mattered more than saving lives.
And that's an ideological difference that cannot be reconciled.
"We can disagree and still love each other unless your disagreement is rooted in my oppression and denial of my humanity and right to exist." -- Robert Jones, Jr.
The disagreement over masks is a denial of our right to exist. Not wearing masks makes you a vector in spreading a deadly, rapidly mutating vascular immuno-suppressive virus that kills and disables people on a mass scale. It denies other people's ability to exist in society, especially as society abandons us to death and extreme poverty.
And not wearing a mask? Not fighting for better air filtration/ventilation? Not fighting against the abandonment of millions of disabled and newly disabled people? Not fighting against this tide of eugenics?
That's denying the humanity of so many of us. It's treating us like trash to be thrown away.
All so the person can run around without a mask in a crowded venue in some sort of weird alternate reality.
Then when the person inevitably gets sick, and sometimes gets #LongCovid, and they come to us and ask how could this happen? Why don't we do more to stop this?
And I, and many others, look at them and say:
"We told you. We warned you. We gave you the tools. But you did not value life. You did not even value your own life.
We do not leave anyone behind, because our ideology values life and keeping each other alive. So we won't abandon you either.
Yes, this was a choice you made for yourself and all the people you were a vector to, so take the time to grieve and learn. So you don't continue the cycle of harm."
This is a nonnegotiable line in the sand. I cannot be friends with people whose ideology values comfort over saving lives, whose ideology denies the humanity and right to exist of others.
How do I ready myself? I was going to eat/drink more for the past week but got a long migraine and health problems bc of hot humid weather. So I drank more but eating more didn’t work out much.
I also have low blood volume so that makes it even worse. I’m generally wrecked for at least a few days after a blood draw.
Absolutely urgent UK based request re face masks. Pls help share?
My mask co. is going insolvent (🤯) & they make the only ffp2/n95 mask I have so far been able to find that doesn't spark hellish nerve pain for me.
I need soft material, fishbowl shape, no pointy edges, certified safety. Ear loops preferred but some head bands might be OK? The material the loops/bands are made from really matters, though. They've gotta be soft! Prefer UK/Europe made, for cost.
Can we build better mutual aid networks on the Fediverse?
We need to build better communities of care. @Tinu has been building an amazing network on Twitter for years, but now that's being shredded by the growing abuse and fascist queerphobic racists. But the network still sort of exists there, and it's why some people end up stuck over there, because the network here is scattered and unreliable.
If we want to build a more just, accessible, equal, and equitable future, then we MUST build up a supportive mutual aid community. One of care, where we leave no one behind.
Disabled folks rely on mutual aid and a network of support.
When people mock or demand people not "beg" for money or mutual aid, when you report our posts? That's all harmful and ableist. If people don't want to see our mutual aid posts, then use the tools within the fediverse softwares to create filters to block that content. Otherwise, leave us alone to build up or help us build up.
Disability payments often aren't enough to survive on even if we are able to get on it. (Some get trapped in endless reapplying for years despite having qualifying disabilities because the system is set up to deny, not aid us.)
So we rely on mutual aid to help keep us alive.
So either help us set this up or shut up and get out of our way please.
tbh, and this is not a shitpost, everyone should have basic medical equipment at home. get that pulse oximeter, get that blood pressure monitor. it's time to take medicine back from doctors.
90% of my ER visits could have been avoided if I had an EKG device and troponin and blood sugar tests tbh, and with 500% less being snarked off by abled EMTs and doctors who don't care about disabled patients.
seriously, disability turns you into your own doctor whether you want to or not. empower yourselves. take your health back from lab coat wearing arseholes who don't deserve your trust because they don't care to earn it.
If you are a Twitter friend and I'm not following your handle, let me know please 😊 especially those in #NEISvoid. If I don't know you from Twitter, down to connect with other sick/disabled folks!
Sooo, in 2015, after 15 years of trying, I finally got on duloxetin. And it was the first med that makes me not cry and not wanna off myself all the time. Yay!
But: since I started the duloxetin I can't sleep. Like, at all. I fall in a weird vegetative state, but no sleep.
So I got put first on one, then two antipsychotics wich act as sedatives.
Without the one I can't fall asleep, without the other I can't stay asleep.
How many days meant to wait after stopping #opiates before starting #LDN? Have prescribed LDN. It used to be 3 days standard but now? Dosage? I got 1.5mg but can pull apart capsules.
What happens when start LDN?
Your experiences also help. I know many out there been through this.
System has pretty much abandoned me. Don’t ever live in wrong postcode.😔
The Social Security Administration has been acting like a for-profit insurance company when disabled Americans apply for benefits: deny, deny, deny.
"In the last two fiscal years, federal judges considering appeals for denied benefits found fault with almost 6 in every 10 cases and sent them back to administrative law judges at Social Security for new hearings"
I'm really glad that I can crochet with just using my hands/arms and don't have to move a lot.
Been dealing with a major pain and body ache flare the last few days which makes doing anything with movement hard. Even watching tv makes the migraine angy.
So some soft music and crochet from a printed pattern is how I've made it thru.
I would like this pain to stop now. I have other things I'd like to do!!
Today is the 2 month anniversary of the death of my partner, Beth Mazur, and it's also the publication day of an NIH study on ME/CFS that I took part in as a patient & that Beth was involved with as an advocate. She supported me during the 21 days I was at the Clinical Center & pushed the scientists to work faster & do better. I'm very happy reporter Jennifer Couzin-Frankel mentions Beth in her #Science article today.
On May 12–the day after the US Public Health Emergency will lapse—#MEAction & #BodyPolitic are holding a protest at the Washington Monument in DC to demand action on #LongCovid#MECFS & related diseases.
Inspired especially by the January #NichtGenesen protest in Germany, it will have rows of cots w/pillowcases decorated by patients & allies.
I literally don't know what to do to convince the Disability Lords in America that my disability is real.
Not even losing my job due to LongCovid and its complications is enough for them. They keep throwing out evaluations that prove my condition and denying my claim.
Now I have to push for an appeal before a judge, and wonder how the hell to get through that without ending up collapsed and worsening my condition.
It shouldn't be this hard to get support and care, but apparently it is.
Every step of the way is covered in red tape, requiring health that I simply don't have to keep up with the increasingly impossible demands to prove I'm ill enough to get disablity. And yet I'm too ill to do it all.
I expected the betrayal and backstabbing red tape from the government because that's what the system is designed to do.
The system is set up to KILL us.
And there's only what... five or so people in power (progressive democrats) who for the first time last year tried to fix all this shitty red tape (plus the fact disability payments isn't enough to live on or the fact we can't marry and other shitty restrictions that hurt us), but mostly Democrats killed it (we all expected Republicans to kill it, because they are ableist white supremacists mostly).
So yeah, excuse me that I don't trust any politician in America to give a shit about us.
But that's not the true source of why I'm angry -- sure I'm upset and angry I got the denial.
But I'm even more angry at how the majority of #Leftists and #Anarchists who OUGHT to be building communities of care that include disabled people....
.... just aren't doing it. They are leaving us to fucking die just like the rest of America. The futures they keep depicting? The meetings and conferences they make? Most aren't accessible AT ALL. That glaring lack of access tells folks like me how content these people are with throwing us away as useless for their future and movements.
So is it any wonder that disabled people are pissed off? Is it any wonder we lack trust in abled bodied people? Because y'all don't give a shit about whether we live or die. Your actions keep showing it.
I'm so angry.
Just so damn angry, because it's not just that I could lose my shelter and ability to exist in my own space.
But it's also because I know too many people who can't get on disability. Who can't get any help, who are losing their homes and jobs and who are dying.
And the fact that people claim to be for justice won't include us in their future? In their solidarity? Because they can't even bother to wear masks or do any pandemic mitigations or an accessibility to keep us safe? Because apparently being accessible is "too much work?" (A bullshit reason I've heard one too many times, plus the whole blaming their inability to do access on 'money' even if I offer solutions that was little to no cost).
Yeah. That is a big sign of how much these people don't care. How much they ate up eugenics.
So yeah. I'm angry.
I'm that angry disabled person at home too sick to go anywhere, who is homebound, who is isolated, who doesn't get to see people in real life for weeks unless it's a medical appointment (and even then I've often had to go virtual).
Society throws away disabled folks, and with each denial in my attempt (and the attempts of my fellow disabled folks) to get help, it's just another stab in the back, another blatant abandonment/neglect. Another reminder of how my life has no value because I can't produce for the Lords of Capital. As hurtful as this is at times, it's never as hurtful than those who claim to be allies to disabled people and yet do the same abandonment.
It's glaring and painful to see Leftists not engaging in community care that includes us. That is by far the worst betrayal of all.
I expected the government's betrayal.
But I foolishly keep having hope that Leftists or even fellow anarchists won't betray disabled people, and yet, they keep consistently doing so with the lack of pandemic mitigations, lack of other accessibility needs, and a lack of even checking in and supporting homebound disabled folks.
So yeah. I'm angry. Just so damn angry.
And it's so damn hard to hold onto hope when there's a whole country hellbent on yelling in my face that I have no worth unless I produce (which I can't right now).
Anyway, that's my rant of the month I guess.
Just please be accessible. Check in with disabled folks. Give a shit about us. And stop leaving us behind in your justice and solidarity and equity movements. Thanks.
I’ve tried every level of government and they simply won’t help. Ask people in real life if they have somewhere for me to go. Is anybody an #advocate? I need help.
I thought I was over this pain flare, and that yesterday's icky feels were just a pain-hangover. But today I woke up in monster pain again. So, you know, that's super fun.