How does one cope with having supportive, helpful doctors? No, really. I have no experience with this. My mother didn't believe in taking us to the doctor unless we fulfilled her arcane venn diagram of "people will talk," "this kid is one of the ones I like right now," and "idk, did jesus tell me to let you die in your sleep or not?" so there's no early childhood experience there. Except for dentistry, because she did take us to the dentist, but he caused me a lot of fear and pain so I have a phobia about it now ✌🏽

Then I spent my first eleven years of adulthood asking every doc I saw to: a.) help me diagnose my debilitating menstrual symptoms, b.) achieve sterile, childfree dream, and c.) send me to PT & give me a macromastia diagnosis so insurance will pay for a breast reduction to fix my awful, chronic pain.

My experience in this was terrible. Legitimately, terrible. I was told to have kids. I was told to lose weight (even though I am not and never have been 'medically' overweight). I was told the process of being diagnosed with endometriosis was more traumatizing than living with mystery symptoms. I was told I was too young to have anything seriously wrong for me.

Getting my current primary caregiving physician changed everything. I've only seen her once, but she knows exactly who to refer to, and believed me when I rattled off all my physical complaints and fucking referred me when I asked for referrals! She is the reason I got referrals to rad specialists. I have never gotten anyone to refer me before! I never even got to the point of dealing with shitty specialists! And it keeps throwing me that I haven't been having to deal with that step.

There was an insurmountable barrier to medical care where there should have been a step, and I keep expecting every subsequent step to be a similar barrier and being emotionally thrown when instead, it's another easy step.

*this post was brought to you by the bluescreen I experienced when the reduction surgeon looked me straight in the eyes and said in the most comforting wisconsin accent "I want you to know your experience is valid and all the things you experienced are real, but everyone I see has the same symptoms so I'm just going to list everything I'm going to tell insurance and you can add anything else at the end."

STUFF I DIDN'T KNOW WHEN I WAS STILL ABLED...

It's not always obvious what's wrong.

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Hi, Doctor. I'm tired. Like, all the time.

No. All the time. I wake up exhausted. I fall asleep at work. I fall asleep in the shower. I'm scared to drive.

No, Doctor. You don't understand. I'm not 'sleepy.' Not 'drowsy.' I'm tired in my bones. My blood feels heavy. The weight of my head hurts my neck. I can't think sometimes--I forget how to read--i get lost in familiar places! I say 'tired,' but I mean that 80% of my life, I feel like a sloppy heap of mud splattering and crumbling from too much moving, too much thinking, too much feeling, too much light, too much noise, too much everything. I'm confused and disoriented and like I'm in a terrible dream.

Oh.

That's a symptom of a lot of things?

Anemia. Migraine. Sleep apnea. Vitamin deficiency. Thyroid dysfunctions. Brain diseases. Heart diseases. Neurological disorders. Blood disorders. Autoimmune issues. Depression and other psychiatric conditions. Lifestyle choices: sleep, food, activity level. Environmental factors: mold, pollution, allergies.

There's a lot of testing to rule things out, huh? Could take years? Yes, I know it will be expensive. Yes, I accept that some of the tests will hurt. Yes, I commit to rearranging my eating/sleeping/exercising habits and seeing every recommended specialist.

Doctor, you don't understand. Either we find an answer, no matter how long it takes, or I am trapped outside of the world forever for no reason. Not testing won't make these horrible feelings stop.

Can you imagine feeling this way? Always? During your friends' birthdays? When your boss demands work? When you're home alone in the middle of the night trying to remember how the sink works? During the commute. During the shower. Taking out the trash. Feeding the cats. Staring at your bills. Talking with your family. For years... weddings, funerals, holidays, weekends, 4am, 4pm, when your loved ones need you, during every emergency, while you fail at your job, at your hobbies, at your relationships, at being your basic self?

Fuck, Yes! Doctor! Run! The! Tests! We are burning daylight!! Let's get this ball rolling! Journey of a thousand miles, begins with single step, etc!

I do want to feel better. This is not my imagination. It's not my fault. I am a reliable witness to my own life and I don't care how many tests 'come back normal.' Those must be the wrong tests to find what's haywire. I know something is wrong and even if we can't fix it, I must understand it.

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I'm now in year 7 of trying to improve my situation. I know so much more about my conditions than I did. I am getting help. I still don't have a full picture. I'm still disabled.

But it's not like it was.

Please. Don't give up. Diagnosis can take years. Some people never get a firm answer. Regardless, you will learn ways to cope. You will meet people who help you cope. Don't give up on yourself. You are worth the effort.

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Seems like something we should all know.

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Disability happens to people without our control or consent. Every single disabled person has strong feelings about their own situation and I would not presume to talk about anyone’s thoughts but my own. But none of us chose to do life on hardmode, so if the world could listen this month, there’s a lot to say.

i wish abled bodied people and doctors would stop saying shit like "you know how to walk, just stand up and try" like its not that straightcut. i *can* walk on good days, but its painful, exhausting, hard. and on bad days i just cant walk. and thats ok. but when i ask people for help its "come on try it yourself first, you can walk", like yes technically i can but it doesnt mean i should/have the ability too right now. if that makes sense

i sometimes just wish abled bodies folks and doctors knew what it was to exist in a body like this

In what fucking world is a flu shot and a covid test $334???? Like????

I figured Id be paying like $150 MAYBE for the nurse's time. But no. Fucking $334.

Hell world.

Medicaid is apparently afraid I will abuse my hormonal birth control, and despite the prescription calling for skipping the placebo pills and immediately starting the next month, they won’t allow me to fill the prescription in that manner.

I am, fortunately, not using it as a contraceptive, but instead to manage several medical conditions.

Which maybe isn’t fortunate, given that my choices are limited on this shit and having an actual period could cause major problems, especially with my autoimmune disease. Anyway, it couldn’t be filled until today.

They’re also freaked out about the minuscule dose of a controlled substance I take. This morning I took the last dose and called to check on my refill (which I had sent days ago) only for the pharmacy system to claim they didn’t have it. The nurse at my doctor’s office, when I called, told me it was because I can’t get it filled til tomorrow because it’s a controlled substance.

Me: I guess I’ll spend tonight really high to cut the pain, then, because I took my last dose this morning.

It’s legal in my state and I’d still do it if it wasn’t.

She paused, then said I should call the pharmacy and explain but lol then I’d be treated with suspicion of being an addict, which I told her point blank. I thanked her for looking into it and wished her a nice day.

Apparently she got that fixed somehow because half an hour later I got the text that it was ready.

I had to drive 45 minutes to pick up the birth control because the system wouldn’t let me schedule Instacart (usually how I have them delivered) and I need it tonight, and then picked up the second at another pharmacy on the way home.

I’m going to pharmacy A to save Medicaid some money, as I got my meds there when I was uninsured for cheaper, but I’m thinking of slowly switching everything over the pharmacy B because it’s like 5 minutes from home.

The moment I got home, I crawled into bed and slept for 3 hours and the prospect of actually getting out of bed again is unpleasant because my pain is not good today so I need the weed anyway. And so my spoons have used calling doctors and going to get my meds and I have accomplished fuck all else.

Man, I just want my meds. I want to take them on time and not feel like maybe I should skip doses to make them last longer because of this sort of thing.

Yay, America.

What's crazy to me is that my family doctor doesn't take 3rd party payments, so because I was in an auto accident (which would be covered by my car insurance, not my medical insurance) they won't accept my insurance. Meaning I'd have to pay for the visit myself. Even though I've already been to the ER. Even though I'm still having complications. Even though I was specifically told to schedule a follow-up appointment with my family doctor.

Now, I'm disabled already so that makes this a fuckin shit ton worse, but friendly reminder that this could happen to *anyone*. If you NEED to go to the doctor because something is wrong, the first thing you hear shouldn't be "you'll have to pay for that out of pocket".

How some people perceive the medical industry: hello I am your doctor you have a splinter so I will give you 10000 mg of drug that will make your insides rot

How the medical industry actually works: yeah you broke your wrist but the hospital is really busy today so we’re not gonna put a cast on it sorry :(

The pharmacist I talked to on the phone tonight was wonderful and helpful in every way and I wish every good thing upon him in his life

...but is was incredibly satisfying when he warned me my prescription would cost $800 and I was able to instantly respond:

"I have a coupon that says I can get it for $11.”

I wasn't trying to set up a gotcha. I was used to a different pharmacy where the coupon wouldn't come into play until checkout, and he was doing the right thing warning me beforehand

But in that moment I felt So. Powerful.

Okay so far in my venture to get my first wheelchair I have:

Asked my doctor to give me something that would let me do that. I do not know what they are supposed to look like. It looks sketchy but since I have no idea how this works and don't expect it to be easy I don't ask.

When I asked my doctor where to go she gave me a medical supplier that only has the standard medical grade chairs... no. I want this chair to be active in and its not temporary by any means.

Checked insurance to see how they'd cover chairs, I have two insurance plans. The hmo requires an in network supplier and would fully cover it if so, but won't pay a cent otherwise. Other ppo plan would cover 70% of the cost with preferred providers and 50% with others.

There is no way online to find the in network suppliers on my HMO. When we called the insurance and med group for a list, they did not know which ones had what type of medical equipment. Out of the list of about 10 suppliers there were 2 that had wheelchairs anywhere near us. Some of the names given were of suppliers that were permanently closed. Of course this was found out by searching each one. The one my doctor named was not given as in network by the insurance.

We went to one of the two and they also only had the standard medical chair, but the main thought of going there was to get help more than anything. The store was run by a couple who were incredibly helpful in explaining what to do. The paper I got from my doctor was a prescription, not a referral, and I still need to contact my doctors office to tell them I need a referral or authorization to be able to get coverage.

They also suggested to look at used chairs to starting a gofundme. To their knowledge and to mine, there are no outside sources from the government or local services to help with these costs. And I have looked.

The PPO I have not looked more into because most new good chairs cost 2-3k and paying 30% of that is still not affordable to me.

I'm going to keep updating this to show abled people and people outside the US just how bullshit all of this is.

When you or a loved one leaves the hospital

Before they start the discharge paperwork, ask "What is going to be thrown away" and "Can we take it with us?" The answers are likely to be 'everything but the furniture and linen' and 'yes'. Then strip everything they say they would throw out. Double check with the nurses if you have doubts, then take it all. You may be shocked at what was going to be thrown out. Sure, things like bottles of cleanser, plastic bedpans, bins, and pitchers are obvious. But the oxygen tubing, the foam wedges or foam booties used to prevent bedsores, the lift sheet used to move the patient up in the bed may also be designated to be thrown out. So you can take them home. Once you get it home, look at your storage options and decide what you can use now, what you can keep, and what you should donate. Plastic bins and pitchers have obvious utility but also keep the bedpan (hope you never need it, but if you do it's better to already have one). Hospital cleansers tend to be either super strong or super gentle, and both are useful in first aid kits. Oxygen tubing can be reused on aquariums and the drama department at your local school might be able to use that lift sheet. Check if local charities will accept donations of things like the foam wedges before dropping them off. In the age of MRSA and COVID, hospitals cannot reuse many things for liability reasons. But that doesn't mean they have to go straight to the landfill or incinerator. You're going to be charged for them anyway, you should get what use out of them you can.

Man the US medical system is fucked up. I lose my vision coverage tomorrow (bc my 21st birthday), and had my last covered vision exam (and chance to get glasses while covered) today.

But my optometrist didn't have any frames that fit my face. At all. Like literally.

I have a wide face and all of the fully covered glasses they had were for narrow faces- and outside of full coverage, my insurance only covers $75 on frames. Everything but the pull coverage frames would have me paying at least $50 out of pocket that I literally don't have.

So I had to go somewhere else.

But we called 7 different places (including three that do take Medicaid) but no one took general Medicaid. All most of them took was a particular third party coverage provider that I wasn't signed up through (and couldn't sign up online or in time to go through them today).

We finally found one that took my insurance thirty minutes before they closed, and booked it down there (after asking if that would be okay).

I just. I have nowhere near as bad vision as some people have. I can go without glasses if I can't get them (with headaches and depth issues) but man. I can't even imagine having to deal with this shit and not having insurance or having terrible vision.

Thank God for Medicaid. I got a notice from the hospital that mercifully said "not a bill" in big letters, but it was still an invoice for what my five day, intestines-trying-to-kill-me stay at the hospital bill would be if I didn't have Medicaid.

Thirteen thousand, seven hundred sixty-eight dollars and ninety-nine cents

My neurologist today straight up stated that the reason it's so hard to get an EDS diagnosis is because the doctors straight up don't want to diagnose it (in part because there isn't really a treatment for it)

He even acknowledged that he'd like to look into a diagnosis for himself (he dislocates very easily) but knows that it is such a difficult diagnosis to get that it hasn't been worthwhile for him to take the steps yet

Like... Y'all that is so bad and so abundantly concerning (like for me this is funny and accurate and everything, but at the same time...) Doctors that don't diagnosis EDS are straight up saying that doctors who do diagnosis simply do everything in their power to avoid actually providing diagnosis, like what if they did this for cancer?

"Oh well, that type of cancer isn't treatable so we are just going to keep avoiding diagnosis and bumping you around from doctor to doctor, but will never acknowledge that you have cancer because that's better for us!"

Absolutely fucking ridiculous

Not being American, I have to ask: what's this about legally having to update your prescription? who requires it and why?

So, I don't think it's a federal law, and I don't know about other states, but in Massachusetts you cannot order corrective contact lenses without a valid prescription. And prescriptions expire here after a year. So, every year, I have to go get checked out by the optometrist before I can order another year's supply of contacts.

As far as who's requiring it...the state government, I guess? Again, I have no idea if other states have similar regulations. The only other state I've ordered contacts in was Tennessee, and since I was still on my parents' health insurance at the time, I went in for a yearly check-up just because it was a good idea and I could. No clue whether it was required or not.

It does seem that our FDA- Food and Drug Administration, in charge of regulating medicine and medical aid devices -requires anybody selling corrective contacts in the States to verify customers' prescriptions with their doctors. And contact lens prescriptions- also glasses prescriptions, I learned while googling just now -usually expire here after two years, maximum (one year minimum, per a federal law passed in 2004). So while regulations may vary from state to state...it seems like you'll end up having to update your prescription in most of the country, one way or another.

Granted, I'm almost certain there are ways around this. There are ways around most laws, if you really try- or if you're desperate enough to have to, given the shitty state of healthcare in this country. As long as I have the ability to do so, though, I'd rather play by the rules when it comes to pieces of plastic floating on the surfaces of my eyeballs.

If you just wear glasses, though, you don't need a new pair every year the way you need to restock contact lenses. So unless you have problems with said glasses, you wouldn't necessarily need to keep your prescription up-to-date.

(Much like dental checkups, though, it's something I personally can't understand not doing if you have the wherewithal. Sure, it's not a barrel of laughs, but they're both parts of the body where things going wrong can too easily go REALLY wrong. Pays to be on top of it if you can, in my view.)

So yeah. Here in the States, the aboveboard, legally-sanctioned way is to go in for an optometrist visit every year or two- whenever your prescription expires -get an updated prescription, order your next year's supply of contacts, and repeat in 12-24 months.

i like going on medblr sometimes, but i never see anyone like ME on there. its all aesthetic pics and casual mentions of sleep deprivation and constant studying. i wish i knew more health students who are managing disabilities and chronic illness and neurodivergence and poverty and multiple marginalizations.

Finally Searching Out An Official Diagnosis

Well, I found a doctor that takes cash paying customers at an economical rate. Shockingly he listened to me when I told him I am hypermobile and possibly hEDS. The primary reason for the appointment was for a Celiac test, though. So glad to finally be off the gluten and waiting for test results. I plan to see him again with the goal of being officially diagnosed for hypermobility syndrome or hEDS. Need resources to explain how that works for him, though. He seemed confused that ordering a blood/genetic test wouldn't work. One step closer. First doctor who actually listened to my issues rather than just fat shaming me.