We Love My Boyfriend For Making This For Me :)

We love my boyfriend for making this for me :)

Felt like I might as well make an intro post to pin on my page so here goes…

Heyo! I’m Lia and I am a 20 year old disabled college student studying marine biology!

So some stuff about me:

- I swear A LOT so please keep that in mind it’s a big part of how I speak. I will do my best be respectful on other people’s blogs and posts when they request I not swear/curse but this is my blog and as such I will speak how I wish

- If I do ever say something offensive please please please let me know and I will adjust accordingly l want to learn and do better

- I am a saphic/lesbian/queer nonbinary/agender person (I have a wonderful girlfriend whom I love very much (they use they/them pronouns))

- I use any pronouns though people typically use she/they pronouns for me based on how I present though I do kinda want to try out ‘e/‘im/‘is pronouns as those resonate with me

- I am a mobility aid user (cane and forearm crutches)

- I am physically disabled and deal with a lot of chronic pain and hypermobility as well as POTS

- I am also autistic (relatively low support needs)

- I have a lot of special interests which I’ll list below

- I’m a massive nerd and bookworm

- I consider myself a bit of a maker (I like to recreate movie props for display and cosplay) and everything I’ve made I’ve made completely by hand (no 3D printing) out of cardboard and EVA foam and hot glue/superglue

- I am super open about a lot of things so you can ask me anything you want and of course if I don’t want to answer it I won’t and this section is always subject to change based on evolving boundaries and what not so if something ends up making me uncomfortable I will probably update this to ask that I not be asked about that

- I talk a lot about my struggles as a disabled person and a lot about accessibility but I am also very new to accepting that I am disabled so again if I misspeak or anything please correct me

The special interests I can think of right now are

- marine biology

- biology in general

- the ocean in general

- corals and jellyfish (Cnidarians)

- scuba diving and snorkeling

- stuffed animals

- books (especially fantasy and dystopian and science fiction)

- comics and graphic novels

- cartoons (specifically Scooby-Doo and Phineas and Ferb)

- TV (mythbusters and dirty jobs being the longest running ones)

- disability rights and accessibility (relatively new)

- marvel and dc movies

- recreating movie props

- Scooby-Doo again cause I feel like I need to emphasize that

- Access, equity, and equality in education

- weird facts about anything and everything (I know a little bit about a shit load of things)

- Punk music and culture (I don’t really “look” punk (to me though there isn’t really one way to look punk) but I definitely feel very aligned with it)

- D&D

Many of these interests I’ve had since I was a young child but some of my former interests include:

- construction (specifically construction equipment)

- physics (this one has been lost due to my disdain for physics classes I still find it interesting but geez I am bad at physics omg)

- Chemistry (I still like it I’m just not obsessed with it anymore)

- Baseball (I still love the sport and watch it when I can but again it’s not an active special interest)

7) languages are hard to learn so the fact you’ve done that is more than so many people (especially American English speakers) can say and also I don’t think I know a single English speaker who speaks “good” English it’s a MESS of a language

8) (this part goes for those who are native (English) speakers too and aren’t “good” at it it’s okay.) this language makes like no sense and the mechanics are difficult to get a handle of (especially if you have any kind of disability that inhibits language or speech or whatever) there is absolutely no reason to apologize for that but that’s not to say that if you don’t have a disability that makes it harder you have to apologize. there is never a reason to apologizing for communicating!!!!

my blog is, and always will be, a safe place for people who are not confident in their english speaking abilities. you will never be judged or mocked here.

You are not gross, or bad, if you struggle with hygenine. Its okay! Last night I brushed my teeth, which was a big achievement for me! Whatever achievement you made, I'm proud of you. And if you didnt make an achievement, I'm still proud of you. I love you so much, and your ability to take care of yourself is irrelevant to that love. /p

Why does so much stuff involve the use of my fucking hands?

I use crutches the majority of the time to get around cause hahaha pain and instability and what not so my hands are like always full so if i want to do something that involves my hand or both hands I have to stop moving to do it. It’s so annoying!

It's Disability Pride Month!! Let's talk about POTS!

Hello beautiful people. Since it's Disability Pride Month, I wanted to talk about my disability. I have a condition called POTS. It stands for Postural Orthostatic Tachycardia Sydrome, which is a very long name, and you can see why we just say POTS. Essentially, it means that when I change position or stand up, my heart rate gets too high. It is normal for your heart rate to go up when you change positions. But what makes POTS different is it changes too suddenly and much higher than average. The National Institutes of Health defines that a person with POTS has "an increase in heart rate of 30 beats/min or more when moving from a recumbent to a standing position that lasts more than 30 seconds". Which on its own doesn't sound all that bad. I would be a much happier human if that's all it was. However, POTS comes with its own host of symptoms. That swing in heart rate can cause dizziness, lightheadedness, blurred vision, and sometimes fainting. Other symptoms of POTS include:

Exercise intolerance

Headaches

Nausea

Fatigue

Anxiety

Dry mouth

Excess thirst

Leg pain

Blood pooling

Brain Fog

Swollen Extremities

Sleeping problems

Bladder problems

Digestion issues

Tremors

Shortness of breath or chest tightening

Memory issues

Poor temperature regulation

Chronic dehydration

Neuropathic pains

Increased sweating to the extremities

Loss of appetite

Light sensitivity

Dry eyes

Heart palpitations

Chest pain

Cold extremities due to poor blood flow

Heat intolerance

Hypovolemia (low blood volume)

And probably more that I've missed! Doesn't sound all that fun, and trust me, it isn't! POTS is a condition under the larger umbrella of Dysautonomia. There are several different types of dysautonomic conditions, POTS is only one of them. Here are some fun facts about POTS:

POTS effects around 0.2% of the world's population

It is most common in females, 75 to 80% of all patients are female

Though it can be diagnosed at any age, it is most commonly diagnosed between the ages of 15 and 25 (I was 19 when I got diagnosed!)

There is no cure for POTS and it's a chronic illness

Some teenagers will outgrow the condition in their 20s

The average time to diagnosis is 5 years and 11 months (took me almost a year, luckily)

According to Dysautonomia International, 25% of POTS patients are so disabled they cannot work or attend school

There is no singular cause for POTS, and many patients will likely not know what caused their condition

Research on POTS is incredibly sparse, making advocacy, treatment, and diagnosis even harder

The usual recommended treatment is increased fluid intake, increasing salt intake, wearing compression stockings, raising the head of the bed to conserve blood volume, reclined exercises like rowing, recumbent bicycle, or swimming, and a healthy diet

While there is no FDA approved medication for POTS, some medications such as beta blockers can be used to aid the condition

Though the heart is directly involved, POTS is not technically a heart condition. It is technically a nervous system disorder stemming from the autonomic nervous system

There's lots to be said about POTS! I don't think I could fit it all in one post if I tried. But if you made it this far into the post, thank you for taking the time to learn about it! Awareness is key, and the more people that know about the condition, the better we are. Happy Disability Pride Month!!