Liste des hashtags les plus populaires par sujet #MUSCULARDYSTROPHY

I’m sorry, what’s that? I radiate assertiveness and ooze self confidence? Haha, don’t let me fool you. It’s mostly a defense mechanism. For me, being in a chair meant I had to stand out in someway other than just the 300lbs of metal underneath by butt, and doing that with my face was a good option. I guess that’s why kids in H.S here in the U.S. used to open doors for me and call me ma’am. And I was barely 17 then (and definitely looked like it lol) Anyway, as you all know, Spinraza dose #9 is on the books so now it’s back to work. I’ve got a lot of DMs from a lot of people asking me questions about the procedure, how I feel, etc... I’m going to try and get back to all of you individually, tho I might just do another short little video where I answer the most common questions. For now, I’m going back to my spreadsheets. They need me. Kick ass, kids. . . . #wheelchairdontcare #wheelchair #rollmodel #iamenough #selfcare #selflove #disabledmodel #ootd #disabledandcute #instafashion #disabledandproud #disability #disabledpeoplearehot #disabilityawareness #mslife #musculardystrophy #stillalive #disabilityblogger #wheelchairfashion #inclusion #diversity #disabledbodiesmatter #instacute #wheelchairgirl #longhair #model #fblogger #fbloggerstyle #diversidad

Its Friday! This will be a quiet weekend. Tomorrow (second Saturday in August, as tradition) at sunset we light a candle for all of those who lost their battle to SMA and hope for those who are still alive and fighting . Maybe you can join us? You can do this from anywhere in the world. Light a candle, post it with hashtag #smacandlelighting2019 It would mean a lot to me Then Monday is #Spinraza day! Gotta make sure I’m well rested so no partying for me. Have a great weekend, kids! What are you up to the next couple of days? . . . #spinalmuscularatrophy #wheelchairdontcare #wheelchair #rollmodel #iamenough #selfcare #selflove #disabledmodel #legs #disabledandcute #disabledandproud #disability #disabledpeoplearehot #disabilityawareness #mslife #musculardystrophy #stillalive #disabilityblogger #wheelchairfashion #inclusion #diversity #wheelchairuser #disabledbodiesmatter #wheelchairgirl #longhair

Let’s talk anxiety. Specifically, surgerical anxiety. ⁣ ⁣ Anxiety is not a subject I often broach. Many with rare medical disorders go years without a proper diagnosis—years with doctors imposing mental illness accusations simply because they don’t posses the knowledge necessary to pinpoint what is going on in our bodies. I am long past that phase. However, I hate to bring up ‘anxiety’ or anything that could be misconstrued & compromise my diagnoses with unknowing medical professionals. ⁣ ⁣ Tomorrow I am having surgery. To put it bluntly, I am anxious as heck. GI surgery & chronic intestinal pseudo-obstruction are not friends. The idea of surgery stirs up the unpleasant memories of my colectomy surgery which was almost a year ago now. Hypovolemic shock. C.diff. Intussusception. Pseudo-obstruction after pseudo-obstruction. Honestly, I never quite recovered. ⁣ ⁣ Going into surgery is petrifying...for both parties. I have multiple complex conditions. There are factors like tissue fragility, reactions, & steroids that mean I am not the optimal surgical patient. Nobody is necessarily keen on operating on me considering what I’ve been through since my last operation. Addressing the risks, with the first one the doctor mentioned being death, doesn’t quell my anxieties. However, the surgery has to be done. If not, the end result is sepsis, & then death. ⁣ ⁣ This gallbladder operation cannot be avoided, as it is impacting my liver, pancreas, & causing infection symptoms. Still, that doesn’t reduce my anxiety levels leading up to 8AM tomorrow. It is similar to when you are about to give a big presentation—your legs are shaking, your face is turning red as you approach the podium, & all you want is to hurry & get it the nervous anticipation over with. Except surgery is much, much worse, & the aftermath is always traumatic. ⁣ ⁣ But that is when we give it all to Him. “Cast all your anxiety on him because he cares for you.” - 1 Peter 5:7⁣

It’s hurricane season. ⛈⛈ And while there’s nothing on the horizon (yet) this time of year is a bit unnerving for us power wheelchair users. I’ve lived in Orlando since 2000 so I’ve had the pleasure of this experience more than once. Being hit by a hurricane usually means no power for any number of days, which means a loss of independence due to us not being able to charge our chairs. Yes, I know there are other things a lot more important and devastating and I’m by no means saying this is the end of the world, but, it’s still a problem. It’s been raining a lot here in Central Florida lately... let’s hope it’s as bad as it gets. What tips do you have and have you lived thru a hurricane before? . . . . . #wheelchairlife #wheelchairproblems #wheelchairlifestyle #wheelchairuser #permobil #wheelchairdontcare #rollmodel #wheelchair #disabledandcute #disabledbeauty #hurricaneseason #centralflorida #rainfordays #orlando #disabilityblogger #model #wheelchairmodel #disabledmodel #disabilityawareness #disabled #emergencypreparedness #spinalmuscularatrophy #musculardystrophy #multiplesclerosis #mslife #wheelchairfashion #wheelchairgirl

It's okay to be different❣ It took me a while to accept my Disability and whilst I tried to be as positive as I could, I found it hard to fit in. My friends were doing activities I felt I was no longer able to do because I had a Disability! Looking back now I realise that Disability is only a word it will never stop me doing what I want to do in life if anything it has learned me who I really am. Be who you were meant to be and own it #disabledandproud#disability#musculardystrophy#fightmd#limbgirdle#disabilityfashion

There was an unexpected rain storm on the drive to the ER tonight. In a way, it was a reflection of my mood. Chronic illness is unpredictable—even more so than the weather forecast. Sometimes, I’m angry about being sick...angry to be at the hospital yet again...angry to suffer...and angry to miss out on the regular activities of life. I try to remain positive, but the reality is, I don’t have a smile on my face every second of every day. During these moments, I don’t want to brave the tempests that are my symptoms. And that’s okay. Because just as suddenly as the storm appeared, the sun will rise to take its place. ☀️

Meow! Are you ready for a bad girl duo!? Me and the gorgeous @amberarden teamed up to bring two of @hannah_alexander_artwork amazing artwork to life!!! It was such a wonderful time hanging out with Amber yesterday @animeexpo and I got to meet so many amazing friends and people! I can’t wait to get there again today and show you all my next fun cosplay!!! • • • photography by @fatmanphotography • • Contact Lenses from @uniqso (Use discount code Kokochan) • • • • #catwoman #cosplay #dccomics #poisonivy #wheelchair #disabledmodel #musculardystrophy #cosplayersofinstagram #cosplayers #animeexpo #ax2019 #animeexpo2019

Gaining weight, or at the very least not loosing weight can actually be a challenge when you have SMA I don’t eat very much and I feel that it can be challenging to eat right - in my case right means food that’ll help me gain weight but also provide me with the vitamins I need to keep my body healthy. I’ve tried different weight gain products and protein ice/shake/juice, but they all taste yucky imo My dietitian recommended Nutricia Compact Protein with vanilla flavoring and it’s actually pretty good I add it in my cup of hot cocoa which makes it both tasty and nutritious If you have any advice for gaining weight or getting enough vitamins please share it so we can help each other

Never thought a man would cry just because I rolled down the aisle ❤️ he always was and will be my mush