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Signs & Symptoms of EDS **swipe for more graphics

Something that i never regret in life is trying thats my spirit,"Dreams comes true for those who wake up early to pursue"💪#Woman(Mungu wetu sote)#Veds

Veds' face when he found out he was going to be a dad.. baby zlatan Zoraja on the way #Melbourne #veds #Swedish #ikea

backstage at #VEDS for @ceciliarosellofficial

@vedaakeenan is feeling the aloha spirit at Lahaina park🌴🌺😍 #wcw #girlswhoskate #veds

Zaman sekolah 'dulu'

@lifeoflace_ Wanted me to share the following with all you on insta, "hello to all I am doing well sorry I am not online anymore but I have decided to spend my time outside" #ehlersdanlos #veds #zerbastrong #warrior

Bit cold #veds

"We'll meet again, don't know when..." #zebrastrong #veds


Good news: I went from 52% body capacity to 64% body capacity! Not the improvement my doctor inspected but I'm happy I didn't get worse! Bad news: With the amount of albumin I've been getting my numbers should be much higher, so I'm not holding it for some reason. Also bc of symptoms and other reactions to meds my doctor thinks something is really wrong with my bladder. Back to the urologist I guess! We will also be trying to find meds that will work better for me then the Albumin, once we figure out the bladder issues. So hopefully I won't need to get the port! It was an Emotional day but ik God has a plan and I'm not fighting alone! #dissingdysautonomia #dysautonomiasucks #dysautonomia #pots #potsy #potsie #potssyndrome #posturalorthostatictachycardiasyndrome #eds #veds #vascular #ehlersdanlossyndrome #zebra #mcad #mastcellactivationdisorder #allergies #stresstest #albumin #bladder #godhasaplan

Signs & Symptoms of EDS **swipe for more graphics

Another #throwback to when I was 14. My boyfriend took this pic on our first night date. I refused the date 3 times because of my poor health, despite I was literally craving for the meeting. All my life I kept thinking I was revolting, a girl to avoid because of her being wacko. Being honest I still don't like the person I see in the mirror but I can see now how beautiful I was just being myself: real smile, real shiny eyes, just a real girl in the world. No judgement. 😊 #ehlersdanlos #ehlersdanlossyndrome #zebrafamily #vasculareds #veds #vascularehlersdanlos #smiletherapy #smilethroughthepain #findacure #helptheresearch #saveme #cureme #spreadtheword #ehlersdanlossyndromeawareness #ehlersdanlosawareness

It's never a bad day on the lake. A few days at the cottage is just what the doctor ordered. And how can you not smile with this much love ❤️. #puppykisses #rescue #potcake #longweekend #lakevibes #lakemuskoka #feelinglove #sunset #cottagelife #ontario #discoverMuskoka #muskoka #cottage #potcake #rescuepup #TCI #livinthegoodlife #butyoudontlooksick #vEds

@lifeoflace_ Wanted me to share the following with all you on insta, "hello to all I am doing well sorry I am not online anymore but I have decided to spend my time outside" #ehlersdanlos #veds #zerbastrong #warrior

What type of doctor 👨‍⚕️ is most helpful for you?

Yesterday was a doozy for me. I started feeling really light headed, dizzy, nauseous, and just down right crappy/drained about an hour and a half before work. I forced myself in the shower leaning against the wall just so I didn't pass out or throw up. I debated on calling out of work, but I've taken so much time off for my current back injury that I just couldn't do it. I made the 20 min drive with cold air blasting on my face while forcing myself to eat an apple. (I thought maybe my blood sugar was low and that's why I was feeling so crappy. (I don't have diabetes I have been tested multiple times)). Luckily I work in a dr's office bc as soon as I got there I almost passed out. They took me back to an exam room and let me lay down. I explained to them that sometimes I just feel this way/ have this type of flare with EDS and it usually goes away if I lay down. At first my bp was 120/90, but I was breathing heavily, super dizzy and nauseous, and I was seeing spots and flashes of light every time I would blink. A little later my bp was 100/60 and I still wasn't feeling well. About an hour and 45 min later I was finally able to sit up without feeling like I was going to fall off the table. My dr thinks that it might be POTS, Postural Orthostatic Tachycardia Syndrome, which is somewhat common in EDS patients. They did blood work to check my blood sugar levels just in case it wasn't my heart, but I am going to follow up with a cardiologist to do further testing. I'm really not feeling down or super upset about it; I'm just excited to get answers so I can stop feeling this way... or at least manage it so I have fewer episodes like this. It was definitely somewhat embarrassing to be going through it at work and to expose my chronic illness, so to speak, to my coworkers and bosses. However, I think it shined a light onto the battles I fight everyday with my chronic illnesses and maybe allowed my coworkers to understand me a little better. What better place to get sick than at a dr's office anyway, right? I feel really lucky to work in such an understanding place and I'm so thankful that my mom, brother, and his girlfriend all came to pick me up❣️

This is reworded from a post shared on @strongerthanpots page. Amazing page with great info.

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