Important Seasonal Reminder, If You're On Meds For Chronic Or Mental Illnesses, They Can Cause You Problems

Would y’all be interested in a Suave and Cunning demisexual Villain x Himbo hero?

‼️please help me get a wheelchair‼️

hello, my name is leo, or more commonly known as ‘lav’ on here.

i’ve been dealing with debilitating chronic pain for over 10 years and i really need a wheelchair. i haven’t gotten much help from my healthcare system, being fat and afab has really fucked me over while trying to seek medical attention..

i am still fighting to completely figure out what’s wrong with me, but for now i know that i have several bulging discs in my lower back, as well as scoliosis. (as well as medically recognised POTS).

my pain is getting worse and worse, and i barely leave my home since walking and being upright in general hurts so much. a wheelchair would improve my life immensely, both physically and mentally.

i am currently on disability benefits, which pretty much is the lowest income group in sweden, and saving up for a wheelchair myself would take a very long time.. i will of course also be saving up as much as i can and putting into an account meant for wheelchair funds.

so i’m asking you to donate if you want to and if you are financially able to, and if not, please reblog this.

i have found a good chair that is also accessible to a fat person, and i need 7111 SEK (around 650$) to cover the cost of the chair & the shipping. i have started a gofundme that i’ll be sharing in this post, and i welcome all help, donating just a little helps, and reblogging and sharing the gofundme in general helps immensely too.

thank you so much for reading💜

gofundme.com

please help me get a wheelchair!, organized by Leo Noren

hey, my name is Leo and i am almost 24 years old. i have been dealing with chronic pain fo… Leo Noren needs your support for please help me

Hey y’all!

I’m about to make a website for an organization I’m creating to help those with hidden/invisible disabilities and illnesses.

I want to be able to make this website accessible for people with all types of conditions and wanted to reach out on here to get any suggestions from people with those types of conditions.

I also created an Instagram for the organization but it’s still in the very early stages so I won’t be sharing yet…

Let me know if you have any suggestions or questions!

So I have a question for others with diagnosed hypermobile ehlers danlos syndrome

When I was diagnosed, the doctor said to me that there are no pain meds that can help with my pain that he is willing to give me because the only ones strong enough to work are highly addictive or can make you “high as a kite” in his words.

Has anyone else been told this? I mean it’s true low level pain meds don’t work on my joint pain but still, is there anything?

Okay but can we talk about Clovis? Everyone always talks about what was wrong with other characters or like Hazel and Piper’s eyes or how Nico was outed, and yes, we should absolutely talk about those things, but no ones ever mentioned this?  I’m always really upset about how his character was distilled down to “hahaha he sleeps a lot” and how it was used basically as a humorous thing. 

Basically, Clovis was a character whose entire personality was a his disability, and it’s entire use was a bit of expose and comic relief.

I have chronic fatigue, and there is NOTHING funny about it. Not just in a “don’t make fun of disabilities way”, but also in a “it is just such a shitty way to live and if you don’t know what’s happening yet it’s terrifying” 

When I was in sophomore year of high school, I developed hahsimoto’s, my endocrinologist, one of the top in the country, said I had “one of the worst cases she had ever seen”, for reference on the severity. I would wake up and go to school, often oversleeping and not getting to school until 10 or 11, sleep through the ride over, go to class, sleep through a lot of those, sleep through lunch, get home, immediately go to bed and often sleep through dinner and until the next morning. I could not stay awake. and I felt the fatigue through my whole body. Doing even the simplest tasks like walking ten feet or microwaving food exhausted me, and my thoughts were cloudy and forming comprehensive sentences was incredibly difficult. I had no idea what was going on at the time, and I was terrified.

I got diagnosed and put on synthroid, so it’s not so bad, but I also have EDS other issues, so chronic fatigue will always be a part of my life. It’s not nearly so bad anymore, but it’s still an obstacle I face everyday and is incredibly difficult, especially as part of an “invisible disability”, and having Rick Riordan use that as a joke is just really annoying. 

Also, can you imagine what it would have been like for him as a child? To have such incredibly sever chronic fatigue, it would have made it near impossible for him to do basically /anything/ as a child, and he probably had a ton of trouble in school - if he even made it to school. 

The biggest thing, though, is that he would have no idea why this was happening. He probably would have been shuttled from doctor to doctor, given test after test after test, none of them yielding any results. No one would know what was causing it, because it wasn’t due to anything medical, it was because of his dad. Can you imagine how hard that would have been? 

Chronic illness isn’t a joke. 

I hate my love language

Hi I’m your local friendly AroAce.

And my love language is gifts. As I’m writing this I’m currently sitting on the floor making stuff for my friends for Easter.

I love to make gifts for people. Or even buying stuff for them. I will sew them a stuffie, draw them a picture, pain and item for them, make a piece of jewelry or otherwise.

But the issue is,

I like presents too.

That doesn’t sound like a problem except that the people in my life don’t really do gifts.

My parents will typically do something that I was already in need of as my present and my friends will typically just mass produce some sort of pastry for the group to share.

And I know it’s greedy and selfish to want something more, something with more meaning.

But I can’t help it. I don’t talk to them about it because I know I would sound greedy and selfish. I just need to rant about it.

I’m sorry.

i love you mr vinman

someone with speech difficulties is not "refusing to speak" to piss you off specifically. whether someone is able to speak or not is completely out of their control, and I can promise that you getting annoyed at them (or choosing to ignore their other communication methods) isn't helping

Idk if I've posted about this before, but the most important thing I've learned in 2022 (The Year Of Never Ending Doctors' Visits) is to leave every medical appointment with a clear-cut set of next steps. When you have a chronic health issue, it's not just as simple as telling the doctor what's wrong and letting them take it from there.

If you go in for an undiagnosed issue, your should leave with:

An investigative plan: Orders for labs, imaging, or specialist referrals to try and figure out what's causing the problem. If your doctor doesn't want to order tests, ask why. It could be an insurance issue (e.g. tests denied unless front line treatments have failed), or it could be a bias issue. If it's a bias issue, things get more complicated, but the first step towards adequate care is asking your doctor to note that you requested testing for the issue and they denied it on the basis of [whatever]. I have some tips for next steps in these situations, so feel free to shoot me a message.

A "what-if" follow up plan: Ask your doctor, "What if the labs/scans/etc. come back negative or inconclusive? What if this treatment plan is not effective after [preestablished length of time]? What's the next step?" and make sure the next steps are noted. This helps keep you on your doctors' radar until you have an effective care plan in place.

A symptom management plan: Really spell out the effect the symptoms are having on your daily life. Let the doctor know you're fully invested in long term recovery, but that you need something to help you live your life as "normally" as possible until the long term treatment plan can be established and take effect. This could be medication, assistive devices, FMLA or other documentation for work/school, etc.

If you go in for a diagnosed issue, swap out the investigative plan for a long-term treatment plan. The goal should be to reduce your symptoms or prevent progression, if possible. For some conditions, this looks pretty similar to symptom management.

This has been working pretty well for me lately. At the end of my appointments, I verbally summarize my understanding, like "Okay, so we're trying to figure out the cause of my [symptom], and you've ordered XYZ tests. If nothing comes back abnormal, you'll [order different tests, refer to specialist, etc.]. In the meantime, I can manage it with [medication, lifestyle change(s), adaptive device, etc.]. Is that a good summary of our plan?"

Rinse & repeat at any/all follow up visits.

i can tell i’m sleep deprived bc i just made myself cry about tutankhamun and i have, like, negative interest in the kid