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Please help raise awareness about a serious illness that hides in plain sight

My name is Ang. If you’ve been following my story then I’m sure you’ve heard about this, but I’ve come down with a chronic illness. I have severe-spectrum MECFS. Myalgic Encephalomyelitis, or cruelly called Chronic Fatigue Syndrome, which downplays how much of a devastating, horribly disabling and terrifying disease this is.

It is an illness that affects millions, leaving a good portion of us housebound or bedbound, some so sick they are paralyzed and need to be tubefed and others die from the illness or complications.

I’ve been bedbound almost 3 months now since my illness has been progressing (which is nothing compared to how quickly it can become years), so sick some days I cant lift a spoon to feed myself, talk, or tolerate light and sound. I can’t draw anymore which was my passion in life as an artist, let alone take care of myself. I can’t even tolerate watching TV or play games most days to distract myself from the trauma caused by being confined to a bed in this sort of agony.

I got ill like this after getting the flu in January, and it’s been downhill from there as I started having bizarre neurological symptoms and collapsing episodes where I was unable to move, the energy draining from my body as the days went on until I needed a cane to walk, then a walker, then I was housebound with a wheelchair, and now I am bedbound and the severity steadily worsens with no let up so far despite doing everything I can to stop or slow the progression.

It is a level of sickness that is overwhelming me and my life is uncertain, but it’s looking grim from this point. I’m in severe pain constantly, on top of having horrible dysfunction in every other part of my body. I’ve only been steadily declining.

I lost my entire life right as it felt like it was starting. I was an artist working my dream job at Cartoon Network, and now I may never be able to return to the animation industry or live out my dreams of telling the stories I wanted.

The worst part is this illness could have been treatable by now! But it’s not, due to a deliberate choice of abuse and neglect by medical institutions. Most doctors aren’t trained to treat or diagnose M.E. and it gets practically no funding. Most sufferers are told it’s all in our heads (wrongfully diagnosed with conversion disorder or functional neurological disorder) even with evidence coming out that it’s a physical neurological disease and the only treatment we are given is get told to take anti-depressants, see a therapist, and exercise (despite exertion intolerance being the hallmark symptom and dangerous).

So the only way people like me have any hope of getting better is if we get a surge in awareness and understanding, and hope it leads to more funding and research. With decades of neglect and lives lost, this can’t go on.

At first I asked for donations when I was trying to figure out what was happening to my body as I threw money at doctors appointments begging for help only to get turned away and given no help, dwindling away my savings from when I used to work. And while donations were loved and helped significantly in my financial situation, it will not give me access to effective treatments if they don’t exist.

That is why I am asking you to help spread awareness. Please educate yourselves and donate if you can to organizations that research M.E.

People like me are suffering with a monster illness as debilitating as late-stage AIDS or cancer, hopelessly sick and dying with little help and living in severe medical neglect. I can’t even get a caregiver which I need now because my family can’t care for me longterm, all because my illness isn’t taken seriously by health insurance companies!

We need help. People with M.E. need help so bad because a lot of us are even too sick to advocate for ourselves.

If you want to know more there’s a wonderful documentary on Netflix made by M.E. sufferer, Jennifer Brea called Unrest (2017). Please give it a watch.

Here’s the trailer:

https://m.youtube.com/watch?v=JvK5s9BNLzA

You can also see her speaking here on TEDtalk.

https://m.youtube.com/watch?v=Fb3yp4uJhq0

Here are organizations you can donate to:

https://solvecfs.org/donate/

https://www.meaction.net/donate/

Please share this. I am one of the #millionsmissing and while I have not been suffering with M.E. for very long compared to others, the trauma and destruction this illness brings is great and no one should have to go through this. I would not wish this suffering upon even my enemies.

We need awareness. We need advocacy. We need understanding. We need funding. We need diagnostic markers. We need research. We need effective treatments and hopefully one day a cure.

I may never have my old life back, and I don’t want anyone else to keep suffering the way I have since I’ve gotten sick. The pain is indescribable. I want one day for someone to get sick like I and others have, only to learn they can be diagnosed and effectively treated or cured.

Please help bring our stories to light. Please help save our lives.

Thank you.

futureblackwakandan-deactivated

me hanging out with black people in the summer: “aye, yall don’t forget to put on sunscreen”

them:

futureblackwakandan-deactivated

@flipflibberinflippinghell

Use the Walgreens Brand which is pretty cheap and it does wonders and doesn’t leave me with a white cast. And I’m dark as hell so I hate looking ashy but not all sunscreens are made equally and it’s one of the better ones I’ve used.

angelic-tokkii-deactivated20220

Wait cocoa/shea butter and coconut oil don’t protect you from the sun we really do need sunscreen??

futureblackwakandan-deactivated

Yea fam. All that “we don’t need sunscreen” shit is a myth. Combine that with the fact that most dermatologists don’t know how to spot skin cancer in Black people and it’s a nasty combination.

jamaicanblackcastoroil

Yeah, it’s harder for us to get it but when we do it’s deadly. I know two people who died of skin cancer, both were Black.

lo-cotidiano

“While incidence of melanoma is higher in the Caucasian population, a July 2016 study in the Journal of the American Academy of Dermatology showed it is more deadly in people of color. African American patients were most likely to be diagnosed with melanoma in its later stages than any other group in the study, and they also had the worst prognosis and the lowest overall survival rate.”

- https://www.skincancer.org/prevention/skin-cancer-and-skin-of-color

Sorry about the link, I’m on mobile. But this is from August 2016, which I know isn’t the most recent but it’s still SUPER IMPORTANT. Y’all please wear sunscreen. With Google it’s even easy to find smaller, Black-owned brands.

news-queue

‘HIV is not done yet,’ says expert as figures show 56,000 Filipinos now living with condition.

A drug-resistant strain of the HIV virus discovered in the Philippines has the potential to spark a new epidemic, scientists have warned.

HIV prevalence among Filipinos has risen sharply in the past decade, at a time when infection rates across the world are beginning to decline.

The United Nations estimates the number of new cases identified in the Philippines each year has risen by 140 per cent since 2010.

Researchers are concerned a new drug-resistant version of the virus, HIV subtype AE, could be fuelling the epidemic.

The strain is more aggressive, more resistant to antiretroviral drugs and progresses to Aids faster than the HIV subtype B generally found in western countries.

“The HIV virus has the potential to transform itself into a new and different virus each time it affects a cell,” Dr Edsel Salvana, director of the Institute of Molecular Biology and Biotechnology at the University of the Philippines told DW.

“There are nearly 100 different subtypes of HIV, with new subtypes being discovered every day.

“Most HIV infections in the Western world are of subtype B. Most of the research that we have on HIV is also on subtype B, though it accounts for only about 12 per cent of all global HIV infections.

“We have discovered that the explosion of HIV in the Philippines is due to a shift from the Western subtype B to a more aggressive HIV subtype AE.”

Dr Salvana added: “Those infected by the HIV subtype AE are younger, sicker patients who are more resistant to antiretroviral drugs. We are also seeing a faster progression to Aids under subtype AE.”

Around 5,000 people in the Philippines were living with HIV in 2006, compared to around 56,000 in 2016, according to UNfigures.

The number of new cases being diagnosed has also spiked in recent years, with some 10,000 new cases identified in 2016 alone, giving the country the fastest-growing HIV rate in the Asia-Pacific region.

Dr Salvana warned work done in recent decades to combat the HIV virus risked being undone if research was not conducted into the new strain.

“HIV is not done yet. We cannot think of HIV as a single virus but as a collection of viruses that are evolving, with a new mutation that can possibly set off a new epidemic.

“The gains that we have made in decreasing HIV infection rates will be short-lived without research and treatment for HIV subtype AE,” he added.

“This is urgently needed. Specifically for the Philippines, we need more scientists willing to do research work on HIV.”

gahdamnpunk

Her name is Callie Lou-Bee Haywood and here’s the gofundme link if you’re able to help!

#BlackTransLivesMatter

zoidmachine

Hi. Don’t forget about Chechnya. This LGBT concentration camp has been open since early 2017, maybe even earlier than that, and the UN has yet to acknowledge its existence. Hundreds of Russians in the LGBT community have died since the existence of this camp surfaced in news headlines in March/April. Educate yourselves. Figure out what you can do to help.

manor-deactivated20180406

https://www.generosity.com/emergencies-fundraising/shelter-for-lgbti-russians

donate to help shelter LGBT russians

https://help.lgbtnet.org/chechnya-en

donate to the russian LGBT network, or email them @ [email protected] for more information or ways to help

scatterbrainmathmatics

micdotcom

Black Australian teenager Francis Ose posted this video Tuesday of his experience at an Apple store in Melbourne that many are calling racial profiling. After the video hit the web, the teens and their principal went back to the store and demanded answers.

grizzlyblack301

A reminder that Anti-Blackness is global.

wildlyunlikelybabe

Fuck yall bruh

imoverallofit

I praaaay they got fired

Who is “they”.

THUG LYFE

This is actually what you should say to an ICE agent who has come to your house looking for an undocumented immigrant.

Specifically, do not open the door; tell them to slide their warrant under the door. Read it carefully and check to see if it’s a JUDICIAL warrant, which will have specific information like the time and location where they’re allowed to search, and a specific description of who or what they’re allowed to search for. ICE practically *never* have this; they’ll have an ADMINISTRATIVE warrant, which is just their orders from their boss telling them to arrest a particular person. It does not give them the right to enter your house.

ICE *can* enter your house if they have probable cause, such as if they see the person they’re looking for through a window or door (which is why you don’t open the door). Other forms of probable cause include kids telling agents that they were born outside of the US. Agents will trick people into chatting with them, especially kids who serve as translators for their parents, asking things like “What part of Mexico are you from?” Staying silent keeps the onus on them to prove in court later that they had evidence someone isn’t here legally.

It’s important to remember that for now, at least, every person ICE wants to deport has to go before a judge, and ICE has to provide evidence that they know this person is undocumented and that they were arrested without violating the 4th amendment (against unreasonable search and seizure). We know that cops lie and that judges usually side with them, but agents would rather go for a sure bet from a targeted raid than risk wasting their time and energy on arrests that could be thrown out. Knowing your rights and being prepared makes you a more difficult target.

“I do not consent to entry without a warrant.”

(This information comes from notes I took at a workshop on being an immigration ally. Learn more at welcomingamerica.org)

ithelpstodream

terefah

for those who aren’t aware, the australian government has abandoned the manus island offshore detention facility where it’s been indefinitely holding over 600 refugees. they have no food, water or electricity and are at risk of malaria. you can donate here to the RISE refugee welfare organisation, and here for the asylum seeker resource centre #bringthemhere

baapi-makwa

Thunderbird Strike is the latest from Indigenous developer Elizabeth LaPensée.

In Thunderbird Strike, a new side-scrolling game that launches at the ImagineNATIVEfestival this week in Toronto, players can control a thunderbird—a symbol in several Indigenous cultures—that destroys as much of the oil industry’s machinery and pipelines as it possibly can. And it’s so satisfying.

The game was created by Elizabeth LaPensée, an Anishinaabe, Métis, and Irish games developer, and assistant professor of media and information at Michigan State University. She told me in an interview that she wanted to create a game where Indigenous players could reclaim some agency around oil pipelines, even if through a video game.

“Especially when we’re talking in the context of pipelines, and the oil industry, there are some wins we can have. But ultimately protectors will be pushed out and the processes are going to move forward. It’s happening with mining and it’s happening with pipelines,” LaPensée told me over the phone.

ayellowbirds

The creator of this game is getting attacked and defamed by oil lobbyists and racists

(and let’s be honest, the venn diagram circle of “oil lobbyists” is just a small circle in the larger circle of “racists”) and could really use support and advocacy:

tweets via @nativeapprops on twitter. Here’s the link to that “Framing Indigenous resistance as terrorism” piece, and here’s the game’s creator’s twitter.

ftmprince

Insurances that cover hormones/gender reassignment surgery

Just a quick guide for all you guys and girls having trouble finding the right insurance. It’s incredibly difficult to find insurance that covers sex reassignment surgery, and even when then do, there’s a chance you’ll be denied.

Make sure you guys are informed so you can make the right healthcare decisions!

Aetna: [x] [x] Amerigroup: [x] AHCCCS: Covers T/Estrogen only Blue Cross Anthem: [x] Blue Cross of Massachusetts: [x] Blue Cross Michigan: [x] Blue Cross North Carolina: [x] Blue Cross North Dakota: [x] Blue Cross Rhode Island: [x] Blue Cross Tennessee: [x] Blue Cross Vermont: [x] Blue Shield CA: [x] Care First: [x] Cigna: [x] Emblem Health: [x] Excellus Blue Cross (NY): [x] Group Health Cooperative: [x] Harvard Pilgrim Health Care: [x] Health Net:[x] Health Partners: [x] HighMark: [x] Independence Blue Cross: [x] Medicare: [x] Obamacare: [x] United Healthcare: [x] Wellmark BCBS: [x] Wellpoint/Unicare: [x]

If you have any more, please add them to the list!

masons-transition

BLESS YOUR SOUL FOR THIS

lagonegirl

You should share this for people in DC and close to you!!

Black Community we have to be careful. Protect our Girls! Spread this!

fomysquad

IMPORTANT!!!!

Signal Boost!

workingitinportland-deactivated

Shelters for undocumented people

Via a friend:

Please spread the word: there are 3 declared sanctuary shelters where undocumented folks can find safety and assistance from the fires in the North Bay. This is from a reputable source who works with the local faith community for immigrant justice.

For those impacted by the #napafire #sonomafire First UMC Santa Rosa (1551 Montgomery Dr) is providing space for evacuees, and they are safe (non-government) harbor. Please send folks there if needed. Pacific Islander/Asian community already very present there.

Two schools are also designated sanctuaries by Sonoma County: Elsie Allen High School and Analy High Schools are sanctuary Shelters. Families cannot be detained or deported while on campus.

—–

Por favor, comparta con todos los traductores de habla hispana y de otros idiomas, tanto la Escuela Secundaria Elsie Allen como la Escuela Secundaria Analy son “Refugios Seguros”, y las familias no pueden ser detenidas o deportadas mientras están en su campus y son los lugares más seguros para estar en el Condado de Sonoma Sanctuary shelters!

dfjks74r78hdg-deactivated201603

a new law is about to be passed in Saudi Arabia that will allow the government to execute people for coming out or being openly gay online.

ignoring the fact that this is literally something out of some kind of dystopian novel, in the interests of safety i’ve emptied out my face tag and may temporarily deactivate or password protect this blog.

please reblog this and get the word out, and if you pray, please pray for me and my fellow Saudi LGBTQ+/MOGAI family.

nicenonbinarythings

ALSO, for those who need it [x]. its a post on erasing all traces of yourself from the interwebs.

kidspointofview

this is not something to read and keep to yourself. please spread this around. may Allah keep everyone safe.

nowatlast

Hello! My name is Adam, I'm 18 years old, and I'm breaking down and turning to the internet for help with paying for my top surgery...

hi ☀️

if you don’t know yet, i’ve scheduled my surgery to be on june 5th 2018 :D i’m incredibly excited for it even though it’s still pretty far away. i’ve lowered my surgery cost by paying $1500 down and i’m continuing to save up for it, but even still i’d like to just circle my fundraiser around to help me out. the total cost is still $6k, which i don’t expect from anyone, but a $5 here and there can really go a long way for me! thank you to everyone who’s donated so far, and please reblog ♥️

npr

Governments in countries across Africa have promised to deliver free menstrual pads to girls. But are they getting the details right?

Sanitary pads are expensive. And in some parts of the world, hard to come by. So why not give pads away for free?

While menstrual health researchers say it’s encouraging that more countries are talking about periods at the highest levels of power, some question the motivations. Others warn that giving away free pads is only part of supporting girls’ attendance in school.

passer-fringillidae

some important parts in this article. Disposable pads work if you have somewhere to dispose them- lots of these schools don’t. Distribution can also be a problem. In the hands of a male teacher, he may choose to exchange sex with his female students for hygiene supplies.

Reusable pads are good, but hanging it out to dry can be shameful if someone sees the stains; so they need to be made of stain hiding fabric. The bags to take them home in need to be simple, reusable and discreet. Again, girls and women get horribly shamed for bleeding. Access to information is also hugely important. There are women with children who don’t understand their menstrual cycles. This is where I give a shout out to Days for Girls. They provide reusable, discreet sanitary pads and education.

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