Guys, gals, and non-binary pals, I am struggling. I didn’t sleep for two weeks straight, I am behind on school work and college applications, my chronic pain has been hellish, and I am just overall exhausted mentally and physically. My friends and family are there for me, but they don’t have any clue what I go through. So I am coming to you all. Please just either respond to this or message me with some words of encouragement. I am a senior in high school, so this is an extremely busy time for me. But I just want to lay in bed and stare at a screen. 

Hi guys! I just submitted an essay for a scholarship for college. To have a chance at winning I need to receive votes for my essay. Because of my Ehlers Danlos Syndrome I reeeallly do not want to take out student loans in case I end up not being able to work, for if that happens I would never pay them off. It’d mean to world to me if you all repost this and possibly vote for me. The essay is about me wanting to become a doctor. Thank you!!

Here is the link to my essay: http://www.wyzant.com/scholarships/voting/154497

Today I was walking by a group of people and I hear “why does that girl walk so weird?” At first I wasn’t bothered; I do walk abnormally due to my Ehlers Danlos Syndrome, and people often question it. However, as I walked by again I notice a girl look me up and down and sneer. I asked if she was the girl who commented on my walking and she said she was. I proceeded to tell her that “I have a condition that makes me walk like this. It’s debilitating and deadly so I’d appreciate it if you didn’t make fun of it.” Then with the utmost sarcasm she goes “oh do you? I’m so sorry.” I was shocked. Normally when I tell people I do things weirdly because I’m sick they get quiet, apologize, etc. But this girl literally did not care. Now at this point I was very angry and I told her to shove her sarcasm up her ass. (Yes this was wrong I shouldn’t have said anything I know). Then with more sarcasm she goes “oh I’m gonna go cry” and I told her “good your tears will wipe off your ugly makeup.” Now I started to think clearly and decided I had to get away because honestly she could have like punched me or something and my body is way too weak for that. Anyway the moral of the story is please don’t comment on things that people can’t change. Whether it’s height, acne, skin color, etc. I acted tough to her face, but after walking away I proceeded to go into a bathroom stall and cry. If someone tells you something personal about themselves and makes themselves completely vulnerable, then don’t stomp on that. For anyone reading this, please be a little kinder today. Compliment someone on their outfit. Hold the door open for a stranger. The world is filled with too much negativity. Let’s spread some joy.

For anyone wondering, the girl was immediately removed from campus and expelled.

Hi yes please don’t play “Pain Olympics”. Everyone’s pain is valid!! Your headache, backache, or sore throat are just as valid as my chronic pain. Yeah overall my pain is a lot worse, but it’s all relative. A backache could be the worst pain someone has experienced you know? That is all thank you

chronicallyinvisible:

everything that chronically ill and disabled people might need to make life a little easier-

health and beauty-

- iHerb - reasonably priced herbs, supplements, vitamins, food, and beauty products - ships worldwide

-Skin Deep - tells you what’s in virtually every cosmetic product ever, and how harmful/safe the ingredients are

entertainment/education-

-JustWatch - tells you where to stream or watch any movie or TV show - worldwide

-sporcle - thousands of quizzes and games

-quora - interesting question/answer site

-duolingo - learn a new language in a simplified way

-whatismymovie? - tell it what you feel like watching, it’ll suggest a film

-Tastedive - tell it music, movies, TV shows, books, etc, you like, it’ll suggest similar ones

food-

-Green Chef - meal delivery kits - US only

-Blue Apron - meal delivery kits - US only

-seamless - food delivery - US only

-FoodByUs - homemade food delivery, kind of like Etsy for food - Australia only

-menulog - food delivery - Australia only

-Marley Spoon - meal delivery kits - Australia only

-SuperCook - type in the ingredients you have, it spits out a recipe

shopping-

-Catch - online discount shopping, including grocery items - Australia only

-livingsocial - discounted vouchers for restaurants, experiences, holidays, health and beauty, etc - worldwide 

-Groupon - discounted vouchers for restaurants, experiences, holidays, health and beauty, etc - Australia and US

-Scoopon - discounted vouchers for restaurants, experiences, holidays, health and beauty, etc - Australia only

-RetailMeNot - vouchers, coupons, deals and sales for virtually every retail website - worldwide

-GoodGuide - links you to the most/least ethical/safe products - worldwide (i think)

I haven’t had a chance to check these out, so I apologize for any broken links or sucky websites. These resources sound amazing though!!

Life Update #2

(I’m not even sure if anyone reads these, and that’s okay because I partly use this blog as like a diary in a way idk)

I’ve decided to divide this update into three sections to organize my thoughts and make this flow better.

Physically: The past few weeks my chronic pain hasn’t been nearly as bad as usual. For about a year straight I had this chronic butt pain (I know that sounds weird; the pain was near my sitting bones so not exactly my butt). It was to the point where I couldn’t sit, lay on my back, or lay on either side without being in excruciating pain. Like words can’t describe how bad it was. I had an MRI done and it was normal, but my doctors could tell I wasn’t exaggerating the pain, so they recommended physical therapy three days a week. However the closest one my insurance would approve is like an hour away and I simply couldn’t make that trip three days a week. Luckily I’ve discovered some things I can do to prevent the pain (certain stretches, walking around after sitting, changing sleeping positions, etc).Now that this pain is pretty diminished I’ve been doing a LOT better. On the downside, my digestive system is completely throwing me for a loop and my dysautonmia has been pretty bad. My cardiologist increased the dosage of my beta blocker though and I’m noticing an improvement. As for the digestive system issues I’m figuring out what foods I can and can’t eat and I’m doing better.

Mentally: My mental health has been a little up and down. Back in like late September early October I just couldn’t bring myself to do anything. I have the tendency to shut down when I’m overwhelmed, so I think that’s what was going on. I also found out I was deficient in B vitamins, which definitely could’ve played a role. Then I had a few really great days and accomplished a LOOOT of stuff that I had to get done. After that though I started to feel bad again. It’s like some weird cycle I’m going through. I guess that’s normal though- we all have good days and bad days. I think I do better when I give myself “tough love” and force myself to do something. Like I’ll force myself to shower or go hang out with friends, and I feel a lot better and get more done. It’s like I gotta force myself to break the cycle.

Personal Life (ie school): For those of you who don’t know I’m currently a senior. My course load is pretty simple this semester (AP English lit, AP government, dual enrollment human biology, and physics because my school doesn’t have ap or honors physics for some reason.) I’m glad my courseload isn’t too bad because of college applications, scholarships, and SAT prep. I’m taking the SAT one more time in November because I wanted to improve my score. So far I’ve applied to like ten scholarships so that’s good!! Honestly my main focus is my college applications. I’m applying to UCI, UCR, UCLA, UCSD, USC, Pepperdine, Yale, and Brown. Obviously the ivys are reaches but you never know!! USC is my dream though. I’m planning on majoring in biology (or something similar like human biology, biology with focus on medicine, etc depending on the college), and becoming pre-med. I know you probably think I’m wild to go into medicine with all my health problems, but it’s my dream man!! And in the twelve years of schooling/residency a cure or something might come out and I’ll be great! Or even if one doesn’t come out I can still try. I’d rather try and fail then never try at all (hence my applying to Yale and Brown).

clinicallychronically:

Some weird shit has been happening

I have some of the weirdest symptoms from the past few days now.

Super insane night sweats

Migraine

Slightly distorted vision from time to time

Going from super cold to insanely hot in the matter of minutes

Nausea

Suuuuper bad fatique

Neck pain

The base of my skull hurts

My hands are a little bit shaky

Night sweats that wake me up because I’m fucking freezing

NO FEVER ????????

WHAT THE HELL EVEN IS THIS MESS. I FEEL LIKE I CAN’T EVEN DO ANYTHING RIGHT NOW. THESE SYMPTOMS MAKE NO FUCKING SENSE. HALP. WAT EVEN IS THIS?????????

Same??? I thought I was just a mess?

Life Update #1

Hi everyone! I sincerely apologize that I haven’t been active lately. I’ve been in kind of a funk because I got sick, which made me stressed over school and my other responsibilities. I created this tumblr in order to educate others (including myself) about Ehlers Danlos Syndrome, invisible illnesses, Dysautonmia, and more; also to integrate myself into a community for emotional support. I really want this blog to succeed and thrive. I put a lot of thought into my posts, reblogs, and direct messages to try and be as relatable as I can, while also being accepting of all different types of communities out there. As a result, I’m not active on here unless I’m sincerely able to dedicate myself to it. (Does any of this even make sense???) Anyway I’m getting out of my funk, so I should be on here more!

As a child my teeth were really messed up. I had really bad overcrowding (due to my eds) and a SEVERE underbite. It was to the point where my speech was impaired (ex: I couldn’t make the “ch” sound), and I would need adult teeth pulled out once they attempted to grow in because there would be no room in my mouth.To fix this I went through five years of monthly othro appointments, two sets of braces, four sets of retainers, and a year of headgear. Not to brag or anything, but I have a beautiful smile now. I even get compliments on them often. After all the years of hating my teeth I’m serious about dental care. I brush at least three times a day, floss once or more depending on if I get food stuck in my teeth, drink coffee/tea through a straw, don’t drink soda or juice, don’t eat candy (besides some chocolate now and then), wait 25 minutes after eating to brush, drink lots of water, but I still have a multitude of pre cavities, two cavities, and one tooth that has a filling but probably needs a root canal. I’m crying right now at the fact that my teeth have cavities. I try my damn hardest to prevent them. The only thing I can think of is that my very severe acid reflux is causing this. Does anyone have any advice for what I can do to stop the acid from ruining my teeth? I really don’t want to end up with fillings on every tooth. Or maybe is there something I can do to strengthen my enamel? Btw I’m on omeprazole, tramadol, and atenolol. I heard medicatiom can cause dry mouth and that can lead to cavities. That’s why instead of mouthwash I rinse with water and have sugarless gum if I want minty breath.

shit-abled-people-say:

I got a rheumatologist tell me to wear uggs or crocs to help with my feet

Those are literally the worst shoes someone with flat feet and feet that literally seem to be collapsing and changing shape could possibly wear? They aren’t supportive at all

Then she told me to exercise wearing them!! You can’t exercise in crocs oh my god I couldn’t even respond I just stared at her I’d been waiting to see her for months because she’s supposedly an expert and just… wow

What the fuck. Honestly in my experience rheumatologists are the absolute worst for having no idea what the fuck they’re talking about. I’m really sorry that happened, it must’ve been really frustrating, especially because you’d waited so long to see her. Uggs…………..

-Rhys

I’m gonna try my damn hardest to go to college and medical school to become a rheumatologist. If I succeed I want you guys to come to my office. I will not let you down.

So far I made myself a healthy breakfast (a feat in itself), washed the dishes, unloaded the dishwasher (my back and wrists didn’t hurt!!), took out the trash, did three loads of laundry, cleaned out my fridge, cabinets, bedroom, and bathroom. God bless good days. I haven’t had one in weeks.

disabilityhealth:

All chronically ill people are cool as hell I’m sorry I don’t make the rules

amen

mychronicthoughts:

I’m astounded by the privilege of people who disdainfully look at me at say, “I don’t like relying on pills.”

Yeah, well, me either but I don’t have the luxury of being able to survive without them.

god bless atenolol

tinypastelunicorn:

thefibrodiaries:

to anyone who thinks those of us with invisible disabilities have “passing privilege”:

being denied access to resources you need is not a privilege.

being refused disability benefits at first glance because you look “healthy” is not a privilege.

getting dirty looks and having insults thrown at you for parking in a disabled space, using a disabled toilet or sitting in disabled seating is not a privilege.

getting accused of faking or exaggerating because “you look fine” is not a privilege.

being made to feel like you shouldn’t sometimes use mobility aids/wheelchairs because you “seem fine without them” is not a privilege.

having doctors not believe you’re sick and even refuse to give you any tests or diagnosis is not a privilege.

being denied treatment and medication because doctors don’t believe you really need it is not a privilege.

constantly being told that “you don't look sick” when you tell someone about your disability is not a privilege. 

being forced to do things that you really struggle to do because “you seem fine”and “you CAN technically do them” is not a privilege.

constantly worrying about how you look and if you should wear certain clothes, make up or do your hair because you’re afraid it might give people another reason to deny your conditions is not a privilege.

being afraid to even tell people about your conditions because you’re worried about how they’ll react and if they’ll believe you is not a privilege.

having your own loved ones question you is not a privilege.

questioning yourself and wondering if it is all in your head is not a privilege.

looking healthy does not mean you get the privilege that comes with a healthy body and mind. having an invisible disability is NOT a privilege and never will be.

Having people tell you your illness ‘isn’t even real’ is not a privilege.

Having people joke about your illness and how it’s all made up so you can be lazy or get money from the government is not a privilege.

Having people question why you need a service dog because you ‘look fine’ is not a privilege.

Having people ask who you’re training your service dog for because they assume it’s not for you is not a privilege.

Having people aggresively approach you and demand to know the details of your illness so they can ‘confirm’ you actually needa service dog is not a privilege.

Having doctors shrug and tell you there’s nothing they can do because there’s not enough research on illnesses you can’t see is not a privilege.

Being told you have to give up a disabled seat on the bus for someone else because you don’t ‘look disabled enough’ is not a privilege.

Having people give you the side-eye for sitting when there’s only so many open seats because they assume you’re fine is not a privilege.

Having someone look at you as if you’re disgusting when you openly admit ‘I’m disabled’ in public, despite how difficult it is to do so even in private, is not a privilege.

Having an invisible disability is NOT a privilege and never will be.

I was discussing my conditions with a friend, and she mentioned that it must be a good thing that they are invisible, for if I don’t look sick than people won’t look at me differently. I was honestly surprised at first by her way of thinking; however, I wasn’t mad because she is my friend and it really was just a bit of ignorance. I took the time to explain these reasons to her and she understood. So I thought I’d reblog this in hopes of spreading awareness.

In November 2014 I was diagnosed with Ehlers Danlos Syndrome (EDS), a rare genetic connective tissue disease characterized by joint hypermobility, chronic pain, and more.
My diagnosis was both a blessing and curse. At first I was thrilled because I finally knew what was wrong with me. Throughout my entire life it was clear that I was different. I couldn’t run like everyone else, I held a pencil strangely, my joints would constantly ache, and my fingers looked very odd due to their bendy nature. Most people, including myself, just thought I was weak. I tried exercising; I took swim, ballet, tap, jazz, hip hop, and gymnastics classes. However, I always ended up quitting because it hurt too much. At one point I was told I needed to see psychiatrists because the pain “was all in my head”. Based off of my appearance, I was a perfectly healthy young girl. So after finding out that I had EDS I was relieved. I already knew I wasn’t crazy, but now everyone else knew. My chronic pain and frequent excuses for not participating in “easy” activities were finally justified.
Nevertheless, my diagnosis terrified me. Upon being diagnosed I was quickly referred to a cardiologist, for heart problems are extremely common with EDS. In fact, EDS affects almost every part of the body, because collagen (the connective tissue EDS affects) makes up 30 percent of your body tissue and 70 percent of your skin tissue. After getting heart tests done, my doctor discovered that I had frequent premature ventricular contractions.That alone didn’t scare me; what scared me was that my problems got worse. My joint pain, my heart problems, my eye sight, my gastrointestinal reflux disease, they all got worse. And with my condition, a lot of it will continue to get worse. It is very likely that one day I will need surgery or that I will be in a wheelchair. And this is why this tumblr is so important. It is a call for awareness, and it is a call for research. Research that may lead to cures, so I won’t have to suffer any longer