Hi everyone. How are you tonight?

It’s been a rough few months, and I wanted to share an update since I haven’t posted in a while.

A few months ago, I was officially diagnosed with Rheumatoid Arthritis, something we’ve suspected for a while, so it was nice to finally get confirmation. My rheumatologist started me on Methotrexate, and that’s when things took a turn for the worse.

I was prescribed 6 tablets once a week and took them for 6 weeks. But I started getting extremely sick with flu-like symptoms, worsened gastroparesis, painful sores all over my body, and more. When we looked up Methotrexate side effects, I had around 20 of the ones that say to seek medical attention immediately.

We later found out that, due to my other health conditions, I should never have been prescribed Methotrexate in the first place. I also should’ve been monitored weekly, which wasn’t happening. Things got so bad we nearly went to the hospital several times, but since I’m immunocompromised and Methotrexate suppresses the immune system, we were afraid I’d catch something in the ER.

We tried contacting my doctors, but no one responded. So we stopped the medication ourselves. It’s been about 3 weeks since I stopped, and I’m still recovering, but I’m slowly getting stronger. Unfortunately, my RA is flaring badly in my hands and feet since it’s currently untreated.

A few days ago, I did end up going to the hospital because I wasn’t improving. They found my blood sugar was dangerously high, diagnosed me with diabetes, gave me fluids, and discharged me. Ironically, I started feeling better the next day. Now we’re unsure if I truly have diabetes or if it’s a lingering effect of the Methotrexate, which can mess with blood levels.

I was so sick I had to take a C in my theology course because I couldn’t finish the final paper, and I had to drop the next class I was supposed to start. My next course begins August 25, and I’m doing everything I can to be well enough to take it.

This whole experience showed me how broken my care coordination is. My primary care doctor didn’t know what was happening and wasn’t communicating with my other specialists. No one was checking my chart to make sure treatments wouldn’t conflict with my other conditions. I have a meeting next week with my Medicaid service coordinator to talk about better coordinated care and possibly enrolling in dual Medicare/Medicaid, which I’ve been told I qualify for.

This could have killed me. I’m grateful to be alive and slowly healing, but I’m also angry and frustrated that this happened at all.

Thanks for reading. I appreciate all of you.

#ChronicIllness #disability #RheumatoidArthritis #Methotrexate #Gastroparesis #Diabetes #Medicaid #Medicare #HealthcareSystem #PatientSafety #CareCoordination #Immunocompromised #DisabledAndProud #Survivor #Spoonie #SpoonieLife #HealthUpdate #ChristianSpoonie

That's the dadgum truth, right there.

#disabled #disability #disabilityawareness #spoonie #accessibility #mentalhealth

Since this got so much attention, I'd like to use this moment of sunshine to invite you all to read with us next week:

inkican.com/gsbcw

Before you tell a disabled person that they need to “just make the healthcare worker mask”… please understand the imbalance of power that exists in hospital settings.

We can’t “just make them” do anything. If they refuse -our options are to take the risk or go without care.

There’s little recourse when a HCW refuses to mask - there’s almost NO recourse that exists in the moment.

You can file a complaint after the fact - but if the care you require is urgent or an emergency - that won’t help you

Imagine you’re taken to the emergency room with an urgent (or life threatening) issue. The doctor comes in and refuses to wear a mask.

Do you walk out? Throw a fit? These are not good options

Even if you manage to keep your composure and strongly advocate for them to reconsider - the longer you argue the more potential virus you’re being exposed to.

The more you “annoy” the staff - the greater the odds of retaliation or reduction in care.

This isn’t like telling a friend or a colleague to mask. The dynamic is completely different.

HCWs have the ability to help you or harm you. You want them on your side.

A note in your chart indicating you’re anxious, difficult, non compliant etc can follow you around and impact all your care going forward. Getting charts corrected and notes removed is a time consuming and difficult process

As a result many patients don’t push the issue. They delay medical care as long as possible and then just cross their fingers they will get a compassionate HCW when they do finally go.

These delays can also cause harm - and shouldn’t be necessary.

Hospitals have never been terribly safe places. They’re where the strongest and most resistant bugs thrive. They’re also where the sickest and most vulnerable people are.

At least before Covid it felt like hospitals were TRYING to prevent infection.

These days it’s as though any amount of infection control is seen as weak. People are actually bragging about how many times they’ve had Covid or about the risks they’re taking with their health. Staff aren’t masking even around babies, cancer & transplant patients

We have to change course. Our healthcare systems could barely handle the amount of chronic illness they were facing before Covid - they certainly can’t handle the constant influx of disabled patients and staff that Covid is causing.

This is why we need mandatory masks in healthcare settings. The responsibility to keep themselves and others safe should NOT fall on the vulnerable patient.

Many are unable to advocate for themselves - and others are unable to mask.

Mandatory masking protects everyone

Lastly - the solution to this problem should not be “don’t go to the hospital”. It’s not right to make ANY patient feel like they’re wrong for seeking care. Like they’ve somehow “failed” if they end up with Covid.

Until you’re facing a life threatening emergency or serious health challenges - you can’t possibly know what you would do.

Is it scary to go to the hospital right now? Of course. Is it also necessary? Absolutely.

Patients should never be blamed for needing care or for being unable to get HCWs to mask. The system is failing us - we aren’t failing each other.

If you need the hospital - you have all my love & support. It’s impossibly hard - and I will keep fighting to make it better.

As long as hospitals refuse to do what’s right to prevent COVID (hello clean air & mandatory masking)… the onus is unfairly on the PATIENT to avoid COVID.

My guide offers tips to reduce your risk of hospital acquired COVID (and other HAIs)

disabledginger.com/p/how-to-st…

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans

How to Stay Covid Safe When in Hospital

A guide to navigating the risk of hospital acquired Covid - as well as how to manage overall risk of nosocomial infections and hospital derived complications.

^{Broadwaybabyto (The Disabled Ginger)}

Ugly laws will be enforced in Louisville. Medical masks will be allowed at “police discretion”.

Police chief says: “We do have to look at behavior of person, what they're doing at time, those kinds of things."

I have a disability that makes me LOOK nervous. I “appear” like I could be doing something wrong. As a result these bans terrify me.

Disabled people have been begging others to mask for years because we were afraid of this exact outcome.

Failure to normalize masking means those of us who NEED to wear them are seen as outliers. Deviants. Possibly criminals. There’s a target on our back.

Medical exemptions are not the answer - they leave too many people behind.

Everyone should have the right to protect themselves from a deadly & disabling virus. Whether already disabled or not.

Banning masks and then saying that the police will determine who is “legit” in wearing one based on their overall behaviour? Its terrifying.

This is exactly HOW profiling occurs. These bans will disproportionately impact marginalized individuals and people of colour.

They could also impact someone with a condition like mine. I’m immune compromised and high risk for Covid complications - so I ALWAYS wear a fitted respirator when I’m outside my home.

I also have dysautonomia - a literal malfunctioning of my autonomic nervous system.

If I’m upright - I “look” nervous. I’m sweaty, shaky, twitchy and sometimes wobbling. I’ve been accused of being drunk in public on MANY occasions.

It’s not my fault - Dysautonomia means I can’t regulate my blood pressure, heart rate, sweating & even pupil dilation.

The things that cops are trained to look for and consider “suspicious” are all symptoms of my disease.

In the past - the worst thing I had to worry about was being accused of public drunkenness. Even THAT was scary for me.

Mask bans mean I could be arrested and charged with a crime. Just for trying to keep myself & others safe.

I tell this story to encourage others to speak up against mask bans. To mask up in solidarity and help us normalize them so they will be harder to ban.

To encourage people to stop assuming if you have a “legitimate medical reason” you won’t have to worry. We DO worry.

We need less judgement, assumptions and gaslighting and more allies. These laws are dangerous. They will lead to more death, disability AND division.

Many of us have difficulty convincing HCWs of our illnesses - what hope do we have with police?

Please - if you CAN mask - now is the time. You don’t have to wait for a mandate or permission. You can choose to say “enough is enough” & be part of the solution. Break chains of transmission. Protect the vulnerable. Don’t allow government to decide who is & isn’t expendable.

We all have power and agency and can choose to do the right thing. We don’t have to sit idly by and accept repeated covid infections & exclusion of disabled people from public life.

Let’s work together and stop these bans before it’s too late.

wdrb.com/news/louisville-polic…

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans #UglyLaws

I called EMS once and police showed up before paramedics (paramedics were busy).

The first thing they said? “You don’t look sick.”

They waited for paramedics who took me to hospital - but that initial response stuck with me.

It’s why mask bans are dangerous. Police aren’t trained to make medical decisions. They shouldn’t be the ones deciding who can and can’t legally wear a mask.

Many illnesses are invisible - you wouldn’t KNOW we’re disabled to look at us.

Most of us have experienced gaslighting from friends, family and even doctors - people are quick to judge and decide you’re “not that sick.”

So are we really expected to risk criminal charges by wearing a respirator & just HOPE police will believe we truly “need it”?

Not to mention that medical exemptions leave behind anyone who wants to mask to protect and preserve their health - as well as caregivers and family of disabled people.

We rely on them to keep us safe - we NEED them masking in public.

I sincerely hope more people join the fight against mask bans soon - because if we don’t fight against them - more cities and states will pass them and more people will suffer.

A good respirator is excellent protection against covid & other illnesses.

We shouldn’t be further excluding disabled and high risk people from public - but that’s exactly what these ugly laws do.

Call your elected officials - tell them medical masks can not and should not be banned.

Don’t embrace escalating fascism and eugenics just because you don’t think it will impact you.

Don’t celebrate it because you hold a grudge about mask mandates.

It won’t stop with disabled people. Help us now & your future self will thank you.

My full article on mask bans, medical exemptions and how we’re witnessing (and even welcoming) escalating eugenics and fascism: disabledginger.com/p/we-are-wi…

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans #bullying #CleanAirClassrooms #UglyLaws

Disability Rights New York has filed a class action lawsuit against Nassau County seeking an injunction to stop the enforcement of mask bans.

This is exactly the kind of action we need to see happen against discriminatory & ableist mask bans.

Law enforcement should not be the arbiter of who is “sick enough” to legally wear a mask. Many disabilities are invisible - and police are NOT doctors.

For more on the Nassau County mask ban and why it’s discriminatory - as well as why everyone (disabled or not) should be allowed to wear a mask - read my article here: disabledginger.com/p/nassau-co…

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans

med-mastodon.com/@luckytran/11…

Nassau County, NY Makes Masking Illegal - Why Medical Exemptions Aren't the Answer

Defendants of mask bans point to medical exemptions as proof that disabled people have nothing to worry about. They're wrong. A look at why bans are ableist, discriminatory and dangerous.

^{Broadwaybabyto (The Disabled Ginger)}

I urge everyone to read this post from Lucky Tran about a proposed mask ban in Nassau County that would see people fined $1000 for wearing a mask. As soon as North Carolina passed their mask ban - we began seeing other cities and states follow suit.

Mask bans are wrong. Period. We are in an airborne pandemic where one of our best and only tools remains a well fitted respirator. The idea that people should have to carry around a medical exemption (which not everyone can obtain) or face fines and/or arrest is ableist and discriminatory. These bans force disabled people out of society because they don’t allow us to exist safely in public spaces - and they will increase the spread of Covid.

Call, email, post… speak out against these bans. Let lawmakers know you won’t visit any city or state that doesn’t allow people to wear a medical device for personal protection and community care.

#CovidIsAirborne #CovidCautious #CovidIsNotOver #MaskBan #BoycottNC #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #NorthCarolina #NewYork #UglyLaws #NewJersey

med-mastodon.com/@luckytran/11…