To the people who couldn’t get out of their bed today, I’m here for you…
To the people who skipped showering because they didn’t have the energy, I’m here for you…
To the people who cried in agony through their shower, I’m here for you…
To the people who suffer daily but no one believes them, I’m here for you…
To the people who feel like they’ve lost or are losing their youth to their medical issues, I’m here for you…
To the brave people fighting for their health every day, I’m here for you, I support you, I believe you. Your feelings are valid, you are loved, and I will stand behind you.
Hey guys, gals, and those who are both, neither or somewhere inbetween. I’ve heard there’s a legend that if you go to a mirror after midnight, but before three in the morning and chant “vaccines are real, my disabilities are valid, and wearing a mask helps stop the spread.” Karen will jump out of the mirror and try to sell you essential oils and peddle some pseudoscience about carbon dioxide poisoning in masks while her unvaccinated son (who has polio) asks if you have games on your phone.
Turns out my hernia may not be a hernia and is likely a gastrointestinal issue, as there’s Crohn’s disease in my family this has worried me a lot.
On the bright side, I’m now being genetically tested (properly instead of just talking to someone about it!) so I’ll finally find out about what type of EDS I actually have instead of their best guess. Looks like it might be classical but I’m cool either way. I’ll also be finding out about a lot of other things through this test so I’m pretty happy about it!
New website, new ordering setup, new HALLOWEEN LIMITED EDITIONS. Re-adding products every weekend for the rest of 2020.
Highly recommend if your in need of a binder and have EDS! Ligit every binder I tried before dislocated my ribs, I bought a sports bra from them and took an inch off my bust size and it’s the most comfortable chesticle prison I own. Was even able to do dance lessons and ride my tricycle in it with no issues!
If I were to create a proper fundraiser would anyone donate to help fund my transition? I have a lot of medical issues that can’t be solved but I can become more comfortable with my physical appearance if I can access medical transition. That’s all I can do I guess, become more comfortable
“It’s OK if your disability stops you from doing things. Not everything can be overcome”
This is just life. That’s what disability means - that there are things that are harder or impossible for you. You don’t have to be “overcoming” everything to be having a good life - do it whatever way works for you.
[Visual description: Cartoon picture of a road meandering over hills. The way forward is blocked by a roadblock with a stop sign on it. At the top of the picture is the above quote]
Please support my close friend, he is a trans man with unsupportive parents. He is also an incredible actor and works hard for what he wants more than anything in his life. He currently needs funds to be in a favourite show of his. Having chronic fatigue this is even harder for him and he has had too work so hard for this. Please support him in anyway you can!
Reblogging for the neck pain ones… whoa Nelly, do I ever get the most killer neck pains.
if youre hypermobile or have eds be careful with some of these
Having EDS and having no gauge for how far you’re meant to stretch.
“You’re telling me I’m not meant to touch my shoulders with my head during the head tilt? Next you’ll be telling me my wrists aren’t meant to click like this!”
I know it’s not the worst aspect of being disabled, but I loathe the sheer amount of rubbish I generate from all my medication boxes and blister packs, and a lot of it isn’t recyclable
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
(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).
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!
