THIS IS ABLEISM @thisisableism - Tumblr Blog

Some people want to ignore your chronic pain after awhile. They want to treat it like an acute injury, old news. But it’s not. It’s your life. So, don’t feel bad asserting yourself when someone tries to ignore the pain you feel. It took me many of years to understand this, but someone erasing your disability is not someone being kind. Or someone complimenting you. At best they are ignorant, at worst they’re a dick. Either way, correct them. Make them see you, see your pain. Even if your disability is invisible to most people, don’t let them take your voice. No, you aren’t lazy because you haven’t been able to leave the house. No, getting a job doesn’t have to be your biggest priority at the moment. You are in this much pain and you are still kind, resilient, and amazing. I think able-bodied people can stand to acknowledge you without ignoring a huge part of your life.

psychoticallytrans

I think we don’t talk enough about how many disabled people in the United States would be able to leave poverty, or never be poor in the first place, if we had unconditionally free and accessible healthcare. There are people that have confessed to me that they can never leave poverty because then they would lose their healthcare and die. The cost of their care outstrips the income cutoff by several orders of magnitude.

I need more blogs to follow since most of the people I follow are inactive. If people could rec some good disability/ableism/chronic illness blogs that would be appreciated.

#orig.txt #ableism #disability #chronic illness #chronic pain

chronicallytiredofeverything

The problem with being chronically ill is that when you become more sick, with more symptoms, people do not understand why its so upsetting.

"But weren't you in pain before?". Yes but this is a new pain that I haven't dealt with before.

"I thought you already had stomach problems?". Yes but this is a new symptom of it that scares me.

"Arent you used to this by now?". No, and I never will be.

Symptoms that have been had for months or years are hard enough to manage in the first place. Developing a new one is scary, and trying to find ways to cope while still juggling everything else is even more so. We are allowed to be upset at our symptoms progressing. It doesn't mean it wasn't bad before. It just means now its bad in another way we arent familiar with. And that sucks.

#chronic illness

takeawaythepain

can society please stop acting like not taking pain medicine is some kind of moral victory?unnecessary suffering is not a badge of honor you should expect people to wear proudly.

#chronic pain

my mom as chronic pain and has emergency pain pills of tramadol and the bottle will last her like half a year but whenever she goes in to get a refil perscribed from her doctor he tells her she's drug seeking adict (also when i was having a super bad flare she called me drug seeking when i asked if i could have one(bc my dictoor has said if im yaving rly bad pain i can have 1))

Hey I’m sorry to hear that your mother is facing mistreatment from her doctors. Fear related to the opioid epidemic and the 2016 CDC guidelines for prescribing opioids for chronic pain has resulted in many pain patients receiving this sort of treatment from their physicians. People with chronic pain are often regarded with undue suspicion and disdain for needing pain medication, so unfortunately your mother’s situation is not unique. I am also sorry to hear that you seem to be struggling with chronic pain yourself.

I know I’m late in responding to this, but I did want to respond because of what you mentioned in the second half of your ask. Your mother legally cannot give you her pain medication. Even one pill, regardless of your pain level. Tramadol is a scheduled substance so sharing medication is illegal, even when you’re related and even if it’s for the same condition. I am sure your pain is severe, but asking her to share her medication puts her in a bad position. I know you are in a bad position yourself, but if she gives you her pain medication she is at risk of legal consequences, being tapered or completely cut off from her pain medication, and being discharged from her doctor.

I’m really not sure why your doctor would tell you that it’s okay for you to take some of her pain medication. If your doctor feels this way then they should prescribe you pain medication. Many doctors are now reluctant to prescribe pain medication, but this does not make it okay for a doctor to suggest sharing medication. Frankly it’s wildly inappropriate for your doctor to suggest that your mother do this rather than simply prescribing you pain medication. I’m sorry your mother called you drug seeking, that’s not okay. I’m sure you legitimately need pain medication. At the same time, she can’t be the one who provides you with it.

If your doctor refuses to prescribe you your own medication and you feel that your pain is not controlled I would suggest getting a second opinion or seeking out a pain management specialist. However, this is not a for sure fix as many doctors simply refuse to prescribe and switching doctors in the hopes of finding someone who takes your pain seriously can lead to accusations of “doctor shopping.” There is no easy solution and it is way harder than it should be for chronic pain patients to receive treatment, but unfortunately this is really the only viable option. For me personally, it took 7 years before I was able to find a doctor that took my pain seriously enough to even consider prescribing pain medication.

#asks #anon

kelpforestdwellers

Ehlers Danlos syndrome and dystonia (muscle spasms/involuntary contractions)

do you have ehlers danlos syndrome or know someone who does?

do you or they experience painful muscle spasms or involuntary muscle contractions? or severe muscle tension?

it turns out that many people with EDS may have dystonia, which is a condition that can cause painful muscle spasms, involuntary muscle contractions, and unusual muscle tension.

there's not a lot of information around about this and only one study exists so far in terms of research. but based on the sample in that study, up to 60-80% of people with EDS may experience dystonia.

the good news is that this type of dystonia is treatable, with a readily available medication that is more typically used for Parkinson's disease. the medication is levodopa. it is a precursor to dopamine, meaning that the body converts it to dopamine. it's usually combined with carbidopa, which makes more of the levodopa available for the body to use. one of the US brand names of this combination is Sinemet.

in other words, if you can't make enough dopamine yourself, storebought is fine!

we don't yet understand why levodopa helps with this type of dystonia in EDS, or why this type of dystonia even occurs in EDS. we also don't have a real protocol for dosage - you will likely have to play around until you find the right dosage for yourself.

it's a good idea to start on the lowest dose and go from there. if your dose is too high, you may experience even worse spasms/contractions than you got without the medication. this is a good sign - it means your dystonia is indeed related to dopamine, and you just need a lower dose.

the hardest part may be finding a neurologist willing to help you by prescribing a Parkinson's medication off label on the basis of one study. but if you have EDS and are experiencing these muscle symptoms, it's worth pursuing if you can, since it is so treatable.

i would be grateful to anyone who would be kind enough to reblog this, because this information is unknown to most people, including most people with EDS, and most doctors. i stumbled across this information by chance through a Facebook patient group and it completely changed my life - i was experiencing debilitating dystonia that was causing severe pain and mobility limitations.

now it's fully treated, and for now at least (🤞🏼🧿) causing me no problems. i hate to think what would have happened if i hadn't learned about this. so i would love this to reach other people in that situation.

heyatleastitsnotcancer

It's also important if you have eds and dystonia to check your cervical spine. I got dystonia from instability in my spine. Addressing that almost completely resolved my dystonia (and it was disabling before doing so). Many people with eds develop dystonia for unknown reasons and respond to this med but for some others, it stems from the spine and brainstem. It's always good to get checked out if you're having these symptoms.

#good information #cervical instability #eds #dystonia

heyatleastitsnotcancer

Let's talk medical alert bracelets. I know it's tempting to try to list all your conditions and medications on an alert bracelet, but it's unnecessary. You only need to include what would affect your care during a medical emergency if you were unconscious or unable to communicate. That means stuff like common medication allergies, if you have intubation issues, medical devices that may affect imaging, and conditions that may cause a medical emergency. You don't want 100 things listed because the EMTs are not going to have the time to read all of that while they're trying to save your life. If you really need more information, include a card in your wallet and use the medical info app most phones have to add extra.

Also, you want an ID that is easy to find, clearly a medical alert bracelet, and easy to read. It's tempting to get something super cute or discreet but you want it to be visible! Emergency workers need to recognize it quickly and easily in an emergency so that you can get proper care. A cutesy medical alert bracelet or necklace could be easily mistaken for something decorative and missed.

Along the same lines, the medical alert bracelets that are flash drives or electronics that plug in or that you have to look up are most likely going to be overlooked or ignored in an emergency. Once again, they aren't going to be able to take the time to plug in a flash drive and look you up in the medical alert company's system while they're trying to save your life. Save the money and go low tech.

Tl;dr stick to simple, easy to find, easy to read, obvious medical alert IDs so that emergency workers can find it and understand it quickly.

heyatleastitsnotcancer

Do these people understand that getting on disability is not a cure-all? Like, it automatically demotes you to a second class citizen in this country, and it ensures you'll be in poverty. I'm not saying people don't benefit from it, but it's not like if the govt gave you a checkmark all your problems would magically end

No, most don't understand this because people are led to believe that's how disability works. That it doesn't take years to win if you "really need it" And that you have access to Healthcare once you get it. And that it pays at or above the poverty line. Pays enough to live.

People often don't understand that receiving ssi or ssdi isn't a cure all because they are not educated on the massive problems that exist within these programs.

fittingoutjane

People think that because there’s been a massive disinformation campaign about the entire “safety net.” People vote against generous programs that have never existed, or haven’t existed in decades, while believing the net will be there to catch them if they fall. Most middle class folks have no idea how little help there really is.

#ableism

disabledprincesses

If you take pills and also go places, bring an extra container with your meds in it in case u remember your meds after getting to class/work/etc.

miqueerla

Further note: if you take a controlled substance (ie many prescription painkillers, Adderall, Xanax, many other meds you have to show proof of ID for), please carry them around in an actual prescription bottle with your name on it! (I use an old bottle of the same meds)

I know a lot of us are marginalized in other ways, and cops are. you know. On the off chance something happens, or your symptoms are mistaken for intoxication, you've got proof right there that the medication is actually yours.

(But also fuck every single law that makes having the medication we need to exist automatically suspicious)

chaotic-diabetic

Just because someone has a chronic illness doesn’t mean they are always required to be advocates, educators and spokespeople. Sometimes we just want to live our lives.

zetabrarian

Something to add to the long list of things I wish able bodied people wouldn't do:

Please don't wrap decorations on the railings of stairways.

It's a common practice for the winter holidays, and a museum I visited today had fake autumn leaves wrapped around the metal railings running down their very steep steps.

Here's the thing: I can't safely go down steps without relying heavily on the handrail. This is ESPECIALLY true when the weather is cold and icy. If there's clutter between my hand and the rail, I'm way more likely to slip and fall.

Please save your festive decor for the architecture that isn't vital to the mobility of others.

maverick-werewolf

IMPORTANT: Wolves under review for endangered species relisting in the US - ACT NOW!

Hello, everyone! I hope everyone is doing well!

I have an EXTREMELY IMPORTANT ANNOUNCEMENT.

Wolves are currently, until December 16, under review by the Fish and Wildlife Administration of the United States to be relisted as an endangered species. The Trump administration delisted wolves, and since then, there have been so many sickening slaughters in multiple states - trapping, hunting, aerial hunting, every single method of death humane and inhumane (many extremely inhumane) are being used to kill wolves by the hundreds. This species cannot take that many deaths and so much senseless hate. The War on Wolves bill needs to be stopped.

NOW IS THE TIME TO ACT. Click here for more, and you can find a link to the site to send in comments here on this page.

Please, please, PLEASE take even just a few minutes to send in a comment and make our voices heard - we must save wolves and we must save them while there are still wolves to save!

NOTE: You can do this regardless of whether you are a US resident!

I cannot emphasize how important this is, to me and to the entire planet. Wolves are a keystone species and are an integral part of the environment, in addition to being beautiful and incredible animals on so many levels (many of which I discuss often on this blog).

For more info on just how important wolves are, even just looking up the wolf reintroduction to Yellowstone National Park highlights just a few of the many ways wolves are so necessary for the greater health of our planet. There are many good videos about it on youtube alone.

Wolves have been, and it seems they always will be, victims of senseless hate. Now we have a chance to do something.

Please share this, spread the word, and let’s make our voices heard!

Raise your voice for them and maybe we can save the wolves!

cockroach-queer

Some things it is A-OK to say to your doctor:

No

Wait

Stop

(These are full sentences! You do not need to say any more)

I am not comfortable.

I am not comfortable, I would like…

you to wait a moment.

another person in the room.

everyone else out of the room.

a doctor/nurse of my same gender to preform this test/procedure.

the person who came with me to this appointment in the room.

you to explain everything before you begin.

you to tell me what you are doing as you go.

to do this another day.

I want to get a second opinion before we proceed.

I don’t understand, please repeat that.

I don’t understand, please explain more simply.

Please say that slower/spell that, I want to do some research myself.

I would like to talk to [someone in my life, ie my parents to SO] before making this decision.

No, I do not need to talk to [anyone] before making this decision, I am confidant on my own and am ready to proceed.

What are the side effects of this medication/procedure? What are the potential complications?

Why are you recommending/prescribing this specific thing?

What other treatment options are there? Why are you choosing this?

Would your treatment plan be different if I were a man/woman older/younger had kids, etc? Why are you choosing this one then?

IS there anything I should know about this treatment you have not yet told me?

I understand you say not to, but If I choose to do X, against medical advice, what risks am I running? (ie taking recreational drugs while on medication)

How much will this cost?

Are there any less expensive options/tests we can run first?

Is there a generic of this medication you can prescribe instead?

I think you are not understanding me, I said…

You are not listening to me, please let me finish describing my symptoms.

You are not understanding how much pain I am in, let me clarify…

I do not think it is anxiety/depression/my weight/etc, what else could it potentially be?

I think by assuming it is anxiety/depression/my weight/etc you are ignoring some symptoms. Please listen again and let’s discuss what else it could be.

Please write in my chart that you are not testing for X and why not.

I am in enough pain/this is detrimental enough to my life that non-treatment is not an option. If you can not treat this/figure out what is wrong, to whom can you refer me?

Please write (or help me write) a summary of what we did today so I don’t forget

What are our next steps?

If [what you are recommending] is ineffective, what would my next steps be? What other doctor should I talk to?

What is the best way to contact you if I have additional questions or issues?

Remember, a doctor is a person YOU pay because they know a lot about bodies in general, to help you figure out whats best for YOUR body. It is still your body, not theirs! They know about medicine but you are the expert in your body. Don’t let them act like they own you. Don’t leave if you’ve still got questions, don’t stay if you’re uncomfortable, and feel free to insist on ANY information you want.

that-catholic-shinobi

ask questions, advocate for yourself. Be aware!!

candiikismet

Y’all don’t understand how important this is. In this last month I’ve had to pull out every one of these. And it’s no joke, you have to be alert and active in your care at allllll times.

hashtagloveloses

Also:

“No I would not like to be weighed today.”

“Please face me away from the scale.”

sexme-donthexme

“please document your refusal of treatment”

kelpforestdwellers

this is really important and helpful, and a lot of these are good scripts that are unfortunately very necessary.

but i have to ask - has anyone actually used the “please document your refusal of my treatment” or “please write in my chart that you are not testing for X and why not” lines and gotten the results they wanted?

cuz i hear this advice a lot. but i don’t hear it backed up with someone’s personal experience of it going well. and i honestly don’t understand why a doctor who’s being obstructive would comply with this request, or become more helpful because the patient said it.

like… they can just lie about writing that in your chart and then continue to deny you treatment/testing. i’ve had doctors falsify records in all kinds of ways and i just don’t understand how asking them to document their negligence is going to help, when they can just. continue to not document it without any consequences.

bittersnurr

Yeah the biggest reason why doctors get away with a lot oft shit is because it is nearly impossible to improve harm caused by them not doing something. Also I have had doctors write what amounted to “patient asked for tests and I refused cuz their just delusional lol” and had nothing come of it. The only time it mattered was when I was specifically applying for disability and needed to prove I was sick before x date to qualify for meaningful benefits because it’s calculated based on age and how many hours you’ve worked in the past x years based on when you become sick. So a doctor saying that in my record meant I was seeking help 5 years before anyone actually did anything… But even if the government recognized I was validly ill even then and now have testing backing me up, I generally still can’t get doctors to do their job.

Like I literally had one outright admit they thought i was bullshit an injury they had visually confirmed existing being infected in a way that implied they only did the actual more thorough exam for the insurance money, and that was after I had Official Diagnosis for everything doctors had tried to claim wasn’t worth testing me for.

Idk most of the advice for doctors feels similar to the stuff for dealing with cops about knowing your legal rights. It’s worth sharing as an option and maybe worth trying, but they don’t have consequences for breaking the rules so you can’t rely on fear of getting caught.

#yeah #I can't imagine any of the crap drs I've dealt with actually complying with that request #I've had a dr essentially fake an EMG study #and he wasn't even close to being one of the worst Dr's I've encountered #at most they'll likely tell you that they wrote it down and then just not...#also many are comfortable with writing that the patient requested a test that they denied because they felt that it was 'all in their head'#like sure you can give it a shot #but I highly doubt this will produce the desired result #medical malpractice #medical negligence #doctors #patient rights