Список из самых популярных хештегов по теме #EHLERSDANLOSSYNDROME

I’m vlogging everyday this month! First day of May has just been posted over on my YouTube channel. Day two will be up tomorrow and it is quite fun! I did the special effects make up for an EMT simulation! I can’t wait to show y’all the videos! It looks CRAZY! Haha Stay tuned for tomorrow’s vlog! #ehlersdanlossyndrome #ehlersdanlossyndromeawarenessmonth #classicaleds #ceds #lifewithstripes

For anyone who feels like a burden, this message from psychotherapist @themindgeek might be the advice you need today: ••• "Small Steps We Can Take • What Is The Real Feeling? When we think about it, the saying “I feel like a burden” isn’t a feeling at all; it’s actually a thought. OK, OK. I hear you: “Great Sarah. So I THINK I’m a burden instead. Why are we arguing semantics?!” But it’s important. Acknowledging the thought “I think I’m a burden,” creates some distance from it. It creates space for us to examine what the actual feeling is which may have triggered this thought. Perhaps we feel overwhelmed? Or worried? We may feel confused, despair, lonely? Getting to the feeling underneath enables us to address what is really happening, instead of getting stuck in a distracting thought pattern.✨ • Solution Or Support? When we worry we may burden someone by talking to them, we can ask ourselves a question to ‘reality test’ this thought Am I looking for this person to support or solve what’s happening for me? Looking for someone to solve what’s happening in our internal world is asking the impossible. This is a change that can only come from within ourselves when we’re ready, BUT it is a process an empathetic ear can support. Remember -- looking for support does NOT make us a burden. It makes us strong. Seeking support models for those we love that they also deserve self-care and self-respect. Who in our lives would we deny that of? We are not burdens for having burdens. Seeking support is truly an unselfish act. It not only supports us, it supports those around us + those we can be there for in the future. ✨” ••• #mentalhealthawareness #chronicillness #chronicillnesswarrior #spoonie #raredisease #disability #invisibleillness #mentalhealth #health #mentalhealthwarrior #spooniecommunity #anxiety #depression #edrecovery #suicideprevention #selfcare #ehlersdanlossyndrome #themightysite#spooniecommunity #themightysite #mightytogether

It is National Ehlers-Danlos Syndrome (EDS) Awareness month! Here are some facts: 1. I have Ehlers-Danlos! I was diagnosed in 2016. Since then, I have been working to compensate for my symptoms with the help of several doctors. 2. EDS is a group of inherited disorders that cause connective tissue issues. 3. Common Symptoms: hyper-mobility and instability of joints, frequent dislocations of joints, abnormally soft skin, prone to bruising and slow healing, irregular heartbeat, chronic pain, fatigue and other neuromuscular complications. 4. Currently, there is no cure for EDS; however, there are methods to limit the effects of symptoms. 5. See https://www.ehlers-danlos.com/what-is-eds/ or your doctor for more details! Feel free to ask questions. #ehlersdanlossyndrome #ehlersdanlos

ER VISIT So yesterday my mom and I decided it would be best to get fluids in me because I was not eating or drinking and my POTS was actively getting worse and worse so I knew I would end up there eventually for fluids. The reason why we went with it is because I will be going to UCLA for medical which means flying and traveling. We first started out with going to our nearest ER which I had a horrible time with last time I went there, so when we heard the wait time just to check vitals was 2-2.5 hours. So we went to a different ER which was about 20 minutes away and the care there was so much better. Vitals were checked immediately along with an EKG, once I went back I met with the nurse and then met with the doctor before any treatment was done. The ER was SO much better then my usual one so I will definitely keep going there. You know it is not an ER visit if something doesnt go wacky! So when trying to place an IV the nurse went for a vein that ended up having so much scar tissues that she had to wiggle it in and it hurt so bad, this ended up blowing my vein. The worst/weirdest part is that when they were taking blood for blood work, the minute the blood entered the vial, the blood clotted! and not just some of it ALL OF IT! The iv itself also had blood clots in it so it works out that they had to switch veins anyways. After I got two liters of fluids I was released, of course when I got released I started feeling shitty again, aka tremors, shaking, lack of focus, restlessness, and the minute i get home im throwing up bile (sorry TMI)... Not my best night thats for sure but definitely looking forward to UCLA which is in a day! ❤️

#Repost @lara.bloom ・・・ I am not my diagnosis, that I spent years trying to find. I am not the burden, that I wish I could leave behind. I am not the pain, that comes and goes like the dancing breeze. I am not weakness in my hips, wrists and knees. I am not the frustration, that I feel with every deep sigh. I am not the exhaustion, that pulls me down when I want to soar high. I am not the tightness that I feel when breathing in, I am trying to fight, and the rope I balance on is thin. I am not failure when the day is to hard to bare, I am not as fragile as the tissue that lives under there. I am not excuses, or labels and reasons why not. I am defiant and brave and I won’t fade and rot. I am a zebra dancing with horses in a world not built for my fragility, I am fierce and determined and my disease won’t stop my ability. I am strong. I choose life. I choose to fly despite my fragile wings. I am not my diagnosis and all that it brings. Lara Bloom #myedschallenge . . . . #eds #ehlersdanlos #ehlersdanlossyndrome #hsd #myhsdchallenge

This literally made me laugh out loud!!! #nocolonstillrollin #nocolon #ostomy #ostomylife #ibdawareness #ibdlife #ulcerativecolitis #crohns #mastcellactivationdisorder #autoimmunedisease #chronicillness #potssyndrome #ehlersdanlossyndrome #cancer #multiplesclerosis #invisibleillness #mentalhealthawareness #lupus #fibromyalgia #chronicpain #rheumatoidarthritis #invisibledisability #pcos #hospitallife #patientadvocate #professionalpatient #chemotherapy #ms

Today is day 5 of #EDSAwarenessMonth and I wanted to talk about mobility aids. In my years I have used a variety of methodologies to get around; crutches, braces, a wheelchair, a walker, some pretty amazing robot legs, and my own two feet. Lately I have had to start using a cane (both for balance and for when the waves of pain hit.). So much for an “invisible illness, am I right? Sometimes I could not feel MORE visible ➡️I am not ashamed though! I will never be ashamed to have to use a mobility device. Before I had to use one, even I fell for the, “Confined to a Wheelchair” phenomenon. ➡️ I think most people, even some doctors, view mobility aids and devices as some sort of huge downgrade in quality of life. I get it, sometimes medical supplies aren’t SUPER glamorous, but what some really fail to consider is the FREEDOM that they can supply for those who truly need them. ➡️So I will continue to use my cane. I will continue to wear my braces. I will continue to answer questions, but I will continue to do my best to live my life to the fullest. ➡️ Tomorrow I begin an intensive outpatient physical and neuro therapy program here in PA. (Furthering my superhero training). Little apprehensive, it’s going to be a lot of work, but I’m most definitely excited. ➡️Bonus: Me “Zaching” against cancer on #zachingday

I’m so so excited to be posting this!!! (There have been so so many times I honestly believed I wouldn’t ever be able to say this!) but here we go! I CAN FINALLY WALK!! It’s taken 127 days (according to Siri) of hard work, set backs and many breakdowns but I’m finally here! Today I managed to walk around my whole ward with my physio (and a few breaks) and I couldn’t be happier! I don’t think I ever would have got here without my friends, family and some of the amazing staff here (especially my physio and a couple of my HCAs/nurses!) I can now also say that I have discharge planned for mid-end of May which is super scary and exciting!! - - - - - - - #paralysis #ehlersdanlossyndrome #paralysisrecovery #hospital #hospitallife #eds #heds #fnd #functionalneurologicaldisorder #chronicillness #chronicfatigue #chronicpain #babewithamobilityaid #walking

I’m struggling. _ I’m struggling to leave my house without overwhelming anxiety. I’m struggling to sleep. I’m struggling with feeling trapped in my house. To smile. To laugh. To pick myself up. _ It’s been a week filled with losses, traumatizing medical procedures, and lots of confronting my past. Like I’m staring down a dark endless hole. _ It’s scary having one of the worst feelings I’ve had in a long time. The soul crushing type. The type of mental pain that manifests in your chest and whole body. _ I know that I’ll climb out. I know I can get back to thriving. But this is the reality right now— and that’s okay. You have to let yourself feel all of it: all the pain, suffering, wondering, joy, sadness, nostalgia. You have to let yourself cry and go through the motions. It’s knowing you’ll see the sun again that’s what counts. And I just keep picturing it. A beautiful bright light, pouring from my head... traveling down my body into every vein, crevice, my heart and soul. And I wait for it every day to fill me.