totally-i-chronic

[totally-i-chronic]

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

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Wishing all undiagnosed/partially diagnosed people a very doctors listening to you and providing you with more testing than a blood draw and even possibly providing treatment 2024

[totally-i-chronic]

Today, 02.26.25, I received my official Ehlers-Danlos Syndrome Diagnosis.

For the past month, I've known it was coming. When all the bloodwork we did to test for autoimmune diseases or inflammatory conditions that might be causing the constant pain and instability came back normal, I knew it was around the corner. Yet I still had to book an appointment just for the doctor to say "Yep! You've got it!"

Now obviously they gave a treatment plan and prescription on top of the diagnosis, but i think selfishly there was a part of me that hoped it would be simpler than it is. Yet at the same time, it's almost too simple.

"Know your limits. Don't push them, but don't just do nothing." sounds so incredibly difficult and so incredibly simple at the same time. I've been doing the same thing to manage my POTS anyway, and I still can't find my goldilocks "just right". Now I have to fully consider the physical pain piece, too?

How many passions of mine is this going to force me to give up? Am I still going to be able to work with children? Can I still sing and dance?

Will I become a shell of who I am now, who is already kinda a shell of someone I used to be?

Sure, I've blossomed a little bit, but I've lost so much more of myself than I care to admit.

And I guess I'm scared to lose even more.

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There’s no such thing as work-life balance for neurodivergent & chronically ill people.

This is because everything in my life requires work:

maintaining friendships

keeping up with my hygiene

managing bills

making money

remembering my basic needs

sleeping regularly

outputting creatively

All requires some aspect of work for me.

And when everything in your life requires work, your balance goes out the window.

If you're neurodivergent and overwhelmed — I see you.

If you're chronically ill and overwhelmed — I see you.

You're not dysfunctional.

You're not incapable.

You're doing your best.

[totally-i-chronic]

I ran into this a lot while publicly insured. I firmly believe most if not all my current diagnoses would’ve been found and treated earlier if I had just been given the same respect and time as I am now through my current insurance.

When I presented my OB/GYN with my concerns prior to my PCOS diagnosis, she asked why I waited so long. I immediately told her I spent 3 years trying to find somebody, anybody, who would be willing to take me on my public insurance with available appointments without putting me on a waitlist for an endless amount of time. This was after being told basically “It might be PCOS but wait it out” at 15. 7 years between when I initially raised concern and finally got seen and believed and treated. I failed to tell her I had been on a waitlist at one point, but that I told them to take me off after 18 months of no updates or anything from them.

Sometimes, treatment and diagnosis is inaccessible. And that’s just not right.

Make it make sense: to make an appointment at a clinic specialised in dysautonomia, I need a referral from a neurologist. I can’t get an appointment with a neurologist because nobody in my area takes on new patients. Therefore I can’t get a referral and can’t go to the dysautonomia specialist. There’s a couple more leads I have but if none of them pan out I will cost my parents even more money because my only option will be paying out of pocket for private healthcare that’s not covered by my insurance. For some reason, appointments are always available for privately insured patients and people who pay for themselves, but people with public insurance have to wait months or even years to get an appointment.

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Still genuinely baffles me every time I remember that the average person isn’t in some form of pain all the time.

Like..not even a tiny bit???

It’s actually crazy to me every time I remember that most people actually don’t experience pain outside of injuries.

[totally-i-chronic]

Just a quick reminder for you out there:

If something works for you, wonderful! Keep doing what works for you as long as it does so and aligns with the advice of your medical teams.

However, be mindful enough to present the information as just that: something that works for you. Not every solution will work for every person, and sometimes it can be overwhelming or upsetting to people to present the information as though it’s gospel.

For example:

People tell me frequently that cardio works wonders for them and they “cured their POTS” with XYZ vitamins and exercise, etc. Wonderful! I’m so glad your symptoms became easier to manage (or potentially even went into remission) with solutions that worked for you! The sprinting you’re suggesting I do, however, will cause me to immediately pass out. It WILL NOT work for me. Believe me, cardio and exercise is a part of the work I’m very privileged to be able to do.

And I had to cut it down by A LOT to make it work with my condition due to the fact I was nearly passing out hourly each day.

TLDR: be mindful when you present information and ideas to people. Your lived experience, while valid, is not the same as theirs and should not be regarded as gospel or benchmark for success.

[totally-i-chronic]

I think I misunderstood the song because my leg bone is NOT connected to my hip bone.

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just because you had one good day or even several good days, doesn’t mean you’re faking everything you went through / go through btw

you are still in pain and deserve accommodations and support even if you are not in pain every single second

[totally-i-chronic]

So, I had a birthday recently.

I turned 23 on Thursday. Right before Valentine's day.

And honestly? I was surprised by how well I was able to manage my symptoms and enjoy the fun even with the pain.

I got all dolled up, went out with some of my best friends, and still managed to make it through the night without overthinking every little decision I made.

Unfortunately, however, health got in the way the day after, even moving into today.

I had a pretty rough flare day yesterday and nothing I did could keep my heart rate at a decent resting rate (for my body). It was elevated and exhausting all day, which made me very grateful that I took the day off.

Then, today, I experienced possibly some of the worst pain I've ever felt. It was immobilizing. I was sobbing on the floor. No meds helped, nothing. Honestly, based on how bad it was, most people would've told me to go to the ER. But I was pretty sure I knew what it was, and by now the pain has subsided enough that now it's just the normal manageable amount of pain.

I know that as my symptoms increase and things get harder or easier I'll get more used to it. I've only been managing (with medical professionals and intervention) most my chronic conditions for about 4 months. The longest I've been managing one with the doctor's advice is still less than a year.

I'm new to everything, and I still have so much to learn, but I know I'm going to use 23 as a chance to continue to expand my knowledge.

And advocate for other young disabled folks.

And be the example I wish I had going through this.

If anyone out there needs someone to listen to or lean on going through something like this, just know I'm here.

None of us are fighting this alone. I just learned this, so now I'm making sure you all know.

[totally-i-chronic]

"Living with chronic illness means constantly adjusting, constantly guessing, constantly dealing with a body that doesn’t always cooperate. Some days, it’s frustrating beyond words. Some days, I just feel... ugly. And I hate admitting that because I know my worth isn’t tied to my appearance. But when your body changes so quickly, when the person staring back at you feels unfamiliar, it’s hard not to feel lost in it."

- by @lynkinchronicles

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I appreciate those posts that say “it’s ok to struggle with the simplest things.”

But most of the time I’m not in pain bcs I think it’s not ok. I know it’s ok. I’m in pain bcs I want to be able to do those things. I’m crying in my bed bcs I want to get up and dance and run and jump. I know it’s ok to not be ok. I know it’s ok to take time, I know it’s ok to be slower, I know it’s ok to need help, I know this is just a form of normal for many people.

I guess I just haven’t accepted it all yet. Bcs all I want is to be able to do more. I don’t feel I need to or have to - I want to. I desperately want to.

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“I think I’m just faking it. Nobody irl really knows. Am I really that disabled?”

Reminder that everybody isn’t constantly aware of their joints

Nor constantly assessing whether they should sit down or put on/use a mobility aid or take ibuprofen

[totally-i-chronic]

Anyone else with a chronic illness get freaked out when your pet shows you more love than usual? Like the oh shit is something really bad about to happen to me and they know type paranoia? Or is that just me?

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My PCP (Primary Care Provider) said when I got my POTS diagnosis that the symptoms, based on my history and descriptions of my experiences through my journal, sound like they’ve been there and an active bother since before my teenage years.

However, because I had experienced chronic migraine that frequently caused dizziness, nausea, lightheadedness, vertigo, etc. that the symptoms managed to fly under the radar. That I’ve likely had this condition for far longer than I knew and completely disregarded it because I assumed it was associated with my chronic headaches and migraines that I’ve been experiencing for more than a decade.

It wasn’t until that appointment that my five failed asthma diagnoses throughout my childhood actually made sense: it was actually air hunger. No wonder doctor’s thought I was fine— I thought I was dealing with the wrong thing.

Now as I continue to pursue other diagnoses, I worry about how often a doctor’s going to hear my complaints or concerns and simply brush them off due to my POTS or PCOS diagnoses.

This is a gentle reminder to advocate for yourself. Take care of yourself. Love on yourself.

Because YOU, my friend, are precious, loved, and worthy.

Other disabled people who are diagnosed with multiple (potentially similar/overlapping things) was it ever a problem where a blatant symptom of one undiagnosed/focus thing was overshadowed by another diagnosed thing that just so happens to cause that symptom as well??

I feel like I would’ve been diagnosed with a few things ages ago if I didn’t have my first one

[totally-i-chronic]

on the topic of mobility aids i just want to throw out a non-comprehensive list of tips from someone who's been using mobility aids for 10 years

everyone has different needs and responds differently to certain mobility aids

if a cane isn't right for you, it doesn't mean you shouldn't look into other aids to see if they help

neurological conditions and things like strokes and brain aneurysms can cause someone to struggle with balance for life and are more than welcome to try out mobility aids

it doesn't matter if it's a genetic condition or an injury- consider an aid

wearing braces and using walkers, canes, and so on is very normal after injuries. please use them if you are in pain for a long time after an injury. injuries are serious too

if you buy a cane and it didn't work out for you, you're hurting no one

folding canes are helpful but have a lower weight limit generally speaking

crutches may be a good idea for you if you really struggle with balance and stability

your mileage will vary with each type of aid. you may benefit more from one aid at one time, and more from another in other situations. you may need several different kinds

if you need a rollator, wheelchair or scooter, it really is okay to get or try one. if your insurance won't cover it it's okay to buy or crowdfund one

walkers and rollators require low upper body strength, unless they need to be lifted up on to a curb in which case the user may need assistance

even the lightest and most well constructed wheelchairs are still heavy. they require a lot of upper body strength and mass to propel if you are doing it completely by yourself. you may also need assistance transporting them, getting them up or down hills, on to curbs, and so on

if you struggle to walk for extended periods of time (30+ minutes uninterrupted) you probably need some type of aid. if you have poor balance you may need some type of aid.

you're not hurting anyone if you end up not needing the aids. it's fine to try them

it doesn't matter if the pain or exhaustion or bad balance is related to your weight. you deserve to be as mobile as you want to and can be. its okay for fat people to use mobility aids. it's not embarrassing. being a fat person using a mobility aid in public isn't embarrassing. the people insinuating that are. fat people deserve quality of life

[totally-i-chronic]

going from being an independent child to a disabled adult who relies on other people everyday, it is a big change to say the least.