salt baby

just me and my doctor advised compression tights, saltstick supplements, and water bottle

[salt-baby]

if anyone (disabled or not) seeing this ever has any questions about my disabled experience that they'd like to ask, my DMs and my asks are open

genuinely, please feel free to ask - I might not get to it right away, and I want to preface I won't answer questions if they make me uncomfortable, but I will do my best to answer as much as I can!

[vacuously-true]

Look I hate to do this but I feel like I don't have a choice. I usually don't agree with call out posts. But this is a call out post. DNI if you support any of these bitches:

My ulnar nerve

My plantar fascia

My fibroblasts

My tibialis posterior tendon 

My tricuspid valve

My interphalangeal joints

My basophils

My peroneus longus

My bronchioles

My C4 & C5 vertebrae

Receipts in MyChart. Stay safe out there.

[salt-baby]

Hello!! I (dx hEDS) just found your blog and don't have time to look through it, so asking now. Do you have craniocervical instability? if you do, do you have pain from it? What joints are weak/painful the most?

Welcome!

I do have craniocervical instability, my beloved PT identified it, but it doesn't seem to be particularly symptomatic. I get frequent headaches, but for lots of different reasons, and my spine x-rays are normal. I can feel the joint shift out of place a bit if I turn my head to far so i just. Don't. Considering everything, not really a problem for me.

My bad joints tend to be my knees and my wrists, but I've been having issues with my ribs and back recently, which is fun.

Hopefully that answers your question? Don't be afraid to ask follow-ups if not.

[salt-baby]

in the latest of a series of divine challenges that prove that my life was never going to be easy, I'm allergic to the fucking sun

[salt-baby]

k so I am allergic to both the heat of the sun and the sun itself (aka UVA I think). fun fact.

[salt-baby]

after only 448 days, I've finally received the first dose of my medication!

a list of steps I had to go through to get Xolair (a life-saving medication, for those at risk of severe allergic reactions):

have a severe reaction, and an IgE blood test shortly after to prove it

submit for a prior authorization under allergic asthma (which I have) and get denied

trial singulair and pepcid for a month, which we knew wouldn't work for my symptoms, and gave me severe acid reflux and depression

get gaslit about the acid reflux by my doctors trainee (thanks! just what I wanted!)

submit another prior authorization and get denied

confirm with my doctor that I'm "in fear of having a severe reaction" to my food allergen

submit for a prior authorization under food allergy and get denied

submit again under a different dosage and get denied

document my daily hives

submit for a prior authorization with that extra documentation, and get denied

purchase a second insurance plan with a more favorable drug plan

let the clinic know I have new insurance once the coverage is active

submit for another prior authorization for the SIXTH TIME to the first insurance company, at this point why not, and get approved

call a specialty pharmacy to get it delivered, who say I don't exist in their database

wait a week and call again, only the cover sheet was sent over, and they have no clue how much the drug will cost

contact the clinic and ask to have the script itself sent

there's no prior authorization record on the second insurance, so call the clinic again and ask what's up

give up, get called by my insurance in the middle of work

get set up in the patient copay program, and give my ID numbers to my insurance

wait a few days and call the specialty pharmacy, who say they see the request but refills aren't covered

call back my insurance, have a conference call with the insurance, specialty pharmacy, and delivery program, who assured me it's a miscommunication

call delivery again, refills aren't covered

call insurance again, it's because delivery took so long the prior authorization is almost expired, but they'll extend it

conference call with the insurance, specialty pharmacy, and delivery company AGAIN

get called back by the delivery company, once again, refills not covered, but they figure it out

schedule it for delivery but it has to go to my hospital

call back the next day to confirm they're actually delivering it, they confirm

the day before my appt, get called by the clinic, the pharmacy, my insurance, and a patient care coordinator, they can't deliver to that hospital

call and set up an appt and delivery for another location

get called again, they're out of stock, call and reschedule the injection and delivery

call to confirm they can receive and hold the medication at that clinic

call to confirm they did receive the medication

an hour before my injection appt, they text and ask me to come in two hours before my appt, apparently 10:30 AM is simply too late to give the injection because of the two hour monitoring period. god forbid I sit in their waiting room past noon

reschedule my appointment again

come in as soon as the clinic opens, check in, and proceed to wait 45 minutes in the waiting room while the medication warms up to room temp

get injected 🎉🎉🎉

spend 2 hours in the waiting room again

Thankfully, no side effects or adverse reactions so far! can't say I really see a difference yet tho.

in total I had to tell the pharmacy that they made a mistake and the medication absolutely did have a valid prior authorization SEVEN FUCKING TIMES

It's only half what my doctor prescribed, as well, I think that's all the insurance would approve. Can't wait to go through this whole ordeal again next month!

[salt-baby]

today in my doctors appointment, my doctor explained my new diagnosis, then suggested I participate in their clinical trial for an experimental drug for 9000$... before mentioning any other treatment options

in case you're unaware, that's grossly unethical and a massive red flag

[disast3rtransp0rt]

You can put your ribs back in place on your own??

I call them my "slippy ribs" and sometimes you just gotta pop those fuckers back into place.

Ehlers Danlos is a bitch but it's MY bitch.

[irrepressible-domovoy]

I really don't think people understand just how much harder it is to be disabled

I don't mean it as "oh, woe is me" but I mean it as "society is malicious and hostile to disabled people"

[salt-baby]

in the latest of a series of divine challenges that prove that my life was never going to be easy, I'm allergic to the fucking sun

[salt-baby]

fun fact, @ rubin_allergy on Instagram and TikTok is an allergist who seems to have made it his personal mission to help replace the now-banned US government health agency announcements on recalls and infectious disease outbreaks

[salt-baby]

gentle reminder that human health does not fit into a binary system and nothing is ever really fully a mental or physical disability

stress can have significant effects on physical health, more than you'd think

and the basis of any mental disability is still physical, that's why it's possible to develop medications for it

[lifeafterpsychiatry]

Fake claimers are a much bigger threat to disabled people than fakers ever will be.

[tritiyum]

they put me on beta blockers because they knew i was meant to be an alpha

[currentlyfreebleeding]

me mentioning to someone that i’m pretty nauseous and them asking me if i need to stay home from an event. girl if i stayed home every time i felt like vomiting i would literally never leave my house ever

[salt-baby]

the screening questions at the beginning of the doctors appointment always go like:

"any headache?" "yes but it's normal for me"

"any nausea?" "yes but again normal for me"

and my coworkers comment on how it's unusual I'm drinking coke and yeah it's because it's a little better for nausea, and for some reason the nausea is shocking? homie I am SICK

[null-and-void-and-gone]

hello my fellow hypermobile people, any of you who have dealt with slipped ribs how the FUCK do you get through it? i’m worried it’s gonna be one of those things where i go to urgent care or whatever and end up waiting 7 hours just to be told “you’re just anxious. if you lose weight, you’ll be fine. fuck off and that’ll be $1,000.” but the amount of pain i’m in is also becoming unbearable and i can only ingest so much ibuprofen and cannabis 🤠

[salt-baby]

I wasn't previously familiar with slipping rib syndrome, but for dislocations and subluxations in general, one of my posts may be helpful

[poppyknitt]

does anyone know if theres a way to tell if u have a very mild form of pots vs some other health issue? I can talk more abt it in dms

[salt-baby]

so, I'm NOT a doctor, but I can connect you with some resources. you can't conclusively rule out or diagnose pots at home, but you can do a quick test that might give you some hints:

borrow a smart watch or a friend to keep track of your heart rate, and lie down for 10+ minutes to let your blood pressure and heart rate settle. in that position, you should have a relatively normal heart rate (60-100, most likely around 80). you want to have an idea of what this number is before you move on.

stand up suddenly from that lying down position and measure your heart rate immediately. this should trigger your symptoms, because when you stand suddenly like this, gravity pulls the blood in your body down to your legs, and people with pots have difficulty circulating that blood back up to your heart and brain. as a result, your heart rate speeds up to try and compensate for the low blood pressure, and either it works and a high heart rate is the only symptom, or it doesn't and you get pre-syncope (seeing spots, nausea, chills, dizziness, tunnel vision) or syncope (passing out). your heart rate may not spike right away, so keep measuring for a few minutes after standing up.

if your heart rate (and this means any one measurement, not the average of a few minutes) spikes to over 100bpm, and is also more than 30bpm over your baseline when lying down, then it would be suggestive of pots.

You can't diagnose pots this way because another diagnostic criteria is that your blood pressure does not drop during this test - the heart rate increase is enough to compensate. If your blood pressure were to drop, it would suggest a different dysautonomia. at home, it's very difficult to measure blood pressure at all, much less accurately.

you still need to get checked out regardless, even if you're very sure it's pots, because a lot of other conditions have very similar symptoms. you also need to get checked out before you try things like a high salt diet, because that's designed to increase your blood volume and blood pressure, which can be counterproductive if it isn't actually pots.

what you can do is try some light exercise, especially something like walking or recumbent biking, and you can keep hydrated, ex. one electrolyte drink a day. you can also try to avoid rapid position changes, and instead take it slow and take breaks to let your blood pressure return to normal.

feel free to dm me, reblog this, or send an ask if you have questions - I'm always happy to talk about stuff like this!

[the-sleepy-eel]

i just got diagnosed with pots! any tips for reducing pain, fatigue or just general pots tips?

[salt-baby]

two of my posts may be helpful:

https://www.tumblr.com/salt-baby/670821019144077312/pots-pro-tips-obviously-this-is-not-medical-advice?source=share

https://www.tumblr.com/salt-baby/751421360802234369?source=share

you're also welcome to reach out and ask if you have any specific questions, I'm always happy to talk about it