“Just do yoga! Your health care team don’t know what they’re talking about!”

Me after trying yoga:

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

I thought getting an Ehlers Danlos Syndrome diagnosis would be straightforward because of the Beighton Scale, but boy was I wrong. 

My rheumatologist said that my skin matched the criteria for EDS, but she didn’t think I was hypermobile and didn’t think I had EDS after examining some of my joints. 

A few months later my pulmonologist, who sees a lot of POTS and EDS patients, examined my skin and my joints and said I was hypermobile. He said I probably had EDS and referred me to a geneticist. 

I mentioned my hypermobility to my cardiologist, who also sees a lot of POTS and EDS patients, and he examined me and agreed that I’m hyper mobile. He went on to say, though, that I “don’t want an EDS diagnosis” because the symptoms of EDS are hard to deal with. I wanted to tell him “yeah, I know, because I’m dealing with them” but I kept my mouth shut.

Three doctors shouldn’t have three different opinions about what my diagnosis should be.

We’ll see what the geneticist says in August. 

Sooo I had sent my friends a video of my leg having a big shaky shaky (aka party mode aka leg spasms) aaaaand this is what happened.

This is my first attempt at making a beaded bracelet! It was really fun, didn’t take too long, and I was able to do the pattern that I wanted to do! I guess it’s my version of a medical alert bracelet

Hey! Welcome to this account, you’re welcome here! Whether you have questions about the condition, questions about treatments, or just need to rant or vent about your condition, feel free to do so! Asks are open and anonymous. Stay strong zebras!

thechronicchillpill:

if you are not wheelchair bound, and need to step out of your wheelchair, please do it.

even if youre in public, dont worry about what people will think or say, if you need to get out of your wheelchair, do it.

you dont owe them an explanation, you dont deserve whatever stares or comments youll attract, and you are still disabled, you still need the wheelchair even if you dont need it constantly.

dont let what people might say or do stop you from getting out of your wheelchair.

I get weird looks when I’m out on a walk and have to get up to fix my smart drive motor, when I cross my legs, when I pull my own chair out of the trunk and put it together. But none of those things mean I’m not disabled and don’t need my chair. Use your mobility aids!

If you would like to hear my diagnosis story, please watch my video, but allow me to give you a brief explanation as to why I am trying to raise money. I have been diagnosed with Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, chronic migraines, sleep apnea, Raynaud’s, chronic fatigue, and chronic pain, along with a yet to be fully diagnosed GI problem (basically I can’t eat anything without severe pain, bloating, and running to the bathroom every 10 minutes.) 

My mom has been doing everything she can to take care of me, but the unpaid bills are piling up, and I am now needing a power assisted wheelchair, a new set of ring splints, and I am trying to get a service dog for mobility assistance and medical alert. Being that we are already in debt from medical bills, our only option is to try crowdfunding.

I would greatly appreciate it if you would share my story.  I am trying my hardest to keep fighting this condition, but I need some help to get some very important aids that will greatly improve my quality of life, and my ability to participate in life again. 

Ihttps://www.gofundme.com/f/gqqv9b-help-me-fight-my-rare-disease?fbclid=IwAR2o-6qxbbGFA27n9CQhcxBv8TrlC8OILGFfVN8oyG0aFlh1Xd3OTQ7nWlI

overexcitedneurons:

mamoru:

imagine if shoes cost $2,000 a pair for ones that do not actively hurt you and are designed to be walked on for more than just a few steps. $2,000 at minimum for the luxury of being able to move around without being injured. that is what wheelchair pricing is like

While 2k is the average, I found a $200 one. Not that I’ve spent that on sneakers, and I used to go for nice Nikes too. And this doesn’t add in shipping and customization. But maybe your physical therapist could do the customization adjustments for you.

The problem I have here is that, yes, manual wheelchairs can be found relatively inexpensively. However, powered, or power assisted chairs are INSANELY expensive. I have Ehlers Danlos Syndrome, and as a result, both of my shoulders sit pretty permanently out of socket. I can’t safely use a manual wheelchair without causing myself more irreparable damage, but insurance won’t cover a power chair because I can walk, although it is painful and I cannot walk for very long.

Medical equipment should be affordable! It doesn’t cost $3000+ to manufacture a power chair, and no one can convince me of that. And while we’re at it, give ambulatory people power chairs! A wheelchair would help me so much, I would be able to go out and actually enjoy going places instead of turning down friends because of the inevitable pain I’ll be in if I say yes. I’m so tired of saying no to my sisters when they have plays, concerts, etc, because I can’t spend 4 days recovering.

Ahem. Sorry. Rant over.

My mom is suddenly mad about “having” to go to my GI appointment tomorrow? She always wants to come to my appointments, plus it’s better to have someone with you, especially being a young woman. And this is the first time ever going to this doctor/ practice.

Also, she wants to make me take an uber to the doctor so she can go out with her boyfriend. How fucking childish.

curlyspoonie:

Calling all fellow Zebras…

Yesterday I was diagnosed with EDS type 3, and during that appointment my doctor said that it is likely I will develop further complications within 10 years. Currently I have chronic pain (joint and nerve), sublux/dislocations, migraines, sleep apnea, heat intolerance, intermitant gastric upset, and soft delicate skin, but no POTS or Gastroparesis, ect. Try as I may, I have found nothing on the progression of this condition, and I was hoping the vast spoonie community might have some insights.

This condition has already taken my independence, my college degree, and my active, pain free life from me, and I want to have a heads up if I’m going to lose more. The hope is obviously that I will not get worse, and that meds will help my pain so I can ditch my cane and get back to a semi normal life, but I’m a little too cynical for that right now.

Bringing this back, since I’ve been diagnosed with POTS, am looking for a GI because of worsening digestive problems and weight issues, and am getting a cervical and thoracic MRI tomorrow to look for structural issues that may be causing worsening migraines, skull pressure, and drooping during migraines. My tremors are also worse, and I may have periarticular osteoporosis (whatever the fuck that is, can someone enlighten me? My shit ass rheumatologist lied to me, told me I was fine, and then a year later I found out that she had lied and discharged me)

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. 

heatherwitch:

Reminder!!!

It’s getting to be that time of year where sickness is rampant. If you have a friend or acquaintance with health issues - particularly a weak or compromised immune system: ALWAYS check in with them before meeting up if you’re feeling sick, even if it’s just a tickle in the back of your throat!

(The last time I was around a friend that was sick I got a cold that lasted for 3 months and a chronic infection from it)

When I get sick I get SICK. And antibiotics completely DESTROY my digestive system. When I was on antibiotics last year I couldn’t keep anything down (not even water) for an entire week! I ended up being in the hospital for four days. And this happens every time I get bronchitis/pneumonia. So if you even have the slightest flu symptom STAY THE HELL AWAY. Thank you!! 

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!