Liste des hashtags les plus populaires par sujet #CRANIOCERVICALINSTABILITY

I’ve been resting/recovering for the past couple of days Also I thought this picture was hilarious because I took it when everyone was waiting for fireworks and I was in the front row and all the people (they stand during the fireworks) Since getting home, my mind has started going a million miles a minute again and I’ve had to get back to medical things In a couple of weeks I am supposed to be having Autonomic testing. Well the instructions came and I have been instructed to not take any of my medications (including for pain, allergies, digestion) for 3 days prior to the testing. If we go through with it, that is going to suck My dad thinks we should just cancel the testing because the doctor didn’t think my Autonomic system was the problem (thought it was Neurosurgical). But I don’t know if canceling the test is a good idea because we have canceled testing in the past and later we will be questioned why we didn’t do it Something kind of new is that with increasing intensity I have been getting this indescribable feeling in the back of my head/neck and I don’t know what is causing it or how to help it. The only way I can even try to describe it is that it itches while also feeling like it is disappeared, while being stabbed and burned. So really every feeling and no feeling all at the same time Also got really sad yesterday when I went to do my symptom book and can hardly write (equally as difficult with each hand, still writing with right hand). My right hand is around 45-50% functioning again and left is at about 65-70%. Both hands it looks like I wrote it during an earthquake with my mouth (AKA super hard to write and it looks terrible) And then my mom pointed out that I mostly use my left arm again and my right arm hangs most of the time My right arm is having such a struggle time. I can only raise it about 4/5 of the way up with it straight, but if I bend it so my hand is on my shoulder I can make my arm in a more up position. That doesn’t help me reach or actually able to use the arm for much It feels like it is 100 pounds and is all twitchy/shaky, but somehow I write using my most controlable fingers - pinky and ring

i’m back with my person! we weren’t meant to be apart. here’s us enjoying the front porch swing. p.s. yes those are dinosaurs on my shirt #reunited

Fashion Statement much (but my pants are soft, REALLY soft) I know I will appreciate looking young when I am older but in the moment it is kind of awkward At the restaurant we went to for lunch my mom asked for a table for 2. And when the sat us they brought 1 adult menu and 1 kids menu (the kids menu is for 9 and under) I didn’t think I looked that young (but my mom is also a 3rd grade teacher and some of her kids were bigger than me and they were 8/9) With my bod and it’s bod tantrums, there are something’s that I choose to do as a calculated risk. Like coming to Disneyland and since it is summer I choose not to wear my VogMask (because it makes my face even hotter and I am less likely to be directly coughed or sneezed on - or at least that is what I tell myself) We don’t know what is going on but my spontaneous allergic reactions are happening more and more and we don’t know the cause of them. The past 2 days I have been relatively okay, no facial swelling, rash, or worse. But today ‍♀️ I have had a couple rounds of lip swelling and itchy face and took Benadryl Between the allergic reactions and the whole peeing situation (now I really need to explain myself because I keep talking about it and not explaining what I mean by it), I feel like I am loosing my Mind. Because I didn’t eat/touch/didn’t notice anything around me that could/should cause this so I didn’t handle the lips swelling so well, there were some tears but I am okay the Benadryl worked Also not such a great update (just it has been weighing on my mind and racing my brain) my right arm is sitting in a really curled in position and I have to make a conscious effort to use it And this is probably completely unrelated but I keep having this popping/clicking in my right side. I assume the feeling is my floating ribs popping in and out of place. It hurts but just when it is happening a lot and it hurts like I can’t breathe (but definitely not the worst pain I have ever felt) Also this could be coincidence or me actually picking up on a pattern of my body but It seems like things start happening on my right side or at least affect my right side more dramaticall

Thank you for your time ✌️

Disability Inclusion• - -When it comes to activism, we as people with disabilities, are often left out of popular social justice movements. Not only are we left out, but we are often forgotten. Today I want to talk about the “no plastic” movement and why it’s important to INCLUDE us in these movements and discussions. - -This is the amount of paper and plastic i have to use every other day to keep me alive. This amount of plastic/waste is NON NEGOTIABLE. It keeps me alive. It needs to be completely sterile, and on top of that- because it’s medical waste it can’t be recycled. There are no alternatives to these materials. - -The plastic straw debate was HOT last summer, and showed many peoples ableist thoughts around inclusion and disability. Not only are many cities banning plastic straws or plastic all together, but they are also making people who use plastic pay FINES. As I said before, some of us don’t have a choice and have to use plastic. We should not be made to have to pay fines in order to survive, that’s discrimination and morally corrupt. - -If you are able to cut plastic out of your life? That’s awesome and you’re doing great things for the planet. But that’s no reason to shame or fine those of us who have no choice but to use plastic in order to live our lives and SURVIVE. We cannot make these sort of sweeping bans and laws before first considering and discussing them with the disabled population and how it will affect our lives. - -Yes protecting our planet and being more environmentally conscious is SO IMPORTANT, but in doing so we cannot forget about and discriminate against an entire population of people. This is just a reminder to make your activism inclusive to everyone, including those of us with disabilities! Don’t forget about us! ✌♿️ #thespooniesisterhood

“You may not realize it when it happens, but a kick in the teeth may be the best thing in the world for you” - Walt Disney Before the post we all need to take a moment to appreciate how much randomness I have attached to Wheelie and the fact that my face actually looks symmetrical (AKA the right side was moving pretty well) Hanging off the back is my backpack, on the right arm rest there is a hair tie, VogMask, and lights, on the left arm rest there is more lights, my “I can’t hear you” earphones, GoPro, and hand sanitizer, and out of frame there are more lights (driving and tail lights). And on the seat with me is the hydro flask, PB, Marty, and my phone We are headed home now but spent a couple more hours in the park this morning. And PB (bunny) accidentally came along (which is probably not helping anyone to not think I am a little kid - but no security check because they don’t wand kids) because I forgot to put him in the car before we went Another fashion statement outfit (pants are made of the same material as the doggy pants and I got some with kitties on them - Christmas and birthday gifts/gift cards). I’m not sure if this one looks like pajamas or not but I am sure it does not blend in with people very well. We were laughing when I was getting dressed because if my shirt had a big castle instead of Minnie Mouse, I would for sure look like I was wearing kid pajamas as clothes This morning we were looking for the Disneyland Band (they are my favorite part of Disneyland) We ended up getting a later start to heading home because I begged my mom to stay and watch them one more time. And we stayed and I loved watching them again My balance and walking is still getting progressively worse and it doesn’t help that I haven’t walked much in the past few days. Now that we are going home, I should walk more, it is just that at Disneyland there are too many factors which could lead to *timber* (uneven/slanted surfaces, ground that is not hard/has some spongeyness, moving walkways, and/or lots of people) From not walking much my legs are awkwardly tight but loose at the same time. So they feel tight but I can feel them slide around when I walk

here’s a win for you: today we met my dad at the park during his lunch, which was basically my first “outing” in over a month. the weather was perfect , and i really enjoyed being outside this was one of those times where pushing myself was worth it. family and nature are big #reasonstokeepfighting for me. i just wish this cool weather would stick around!

It’s a Small World I hadn’t realized but a few rides at Disneyland actually have the option to not transfer out of the wheelchair Which was fantastic because I can transfer into the ride car, if they stop the ride from moving completely and there is not a huge difference in floor levels (ex: Midway Mania - although that was a bit to turney for my back) As for rides like it’s a small world (huge height difference), it is easier and not so dangerous for all involved if I just stay in Wheelie I don’t know if I prefer when it is really awkward and kids are starting at me or when parents yell to their enchilada to watch out. Neither are preferable because the staring is really awkward and I don’t/won’t just start chatting them up It is awkward and gets kind of rude with the whole staring thing, but I get it. When people are out of the usual and look different they are going to be started at. It is human nature and I know I probably do it too Over the past few days I have had a reaction I have never had before, where parents are like “Son/Daughter (or thief name) WATCH OUT” and then try to not so obviously (depends on how old the kid is) gesture in my direction In really crowded situations, this is kind of helpful because that is one less person who might knock into me and everyone else kind of looks around and then don’t crash into me too But on the other hand, by looking at the kid who was directed to watch out, you can see they were scared/alarmed by the interaction which is the opposite of being a positive experience. And probably explains why so many people seem to fear disabilities and wheelchairs and braces Total side note but something I thought I would say is that my feet/ legs (mostly my feet) are kind of swollenish. I don’t know if it is because of increased salt (increased my salt a little while ago but probably ate more than “usual” today) or the sun or what or maybe a combination of all I have been sitting with my feet up/curled up to my chest as much as I can and soon after this picture was taken ditched the shoes and just didn’t walk anymore after that. Which helps with the purpleness of my feet and hips not to slip out

chronic illness can take a lot, and i mean a lot from us. it can feel lonely, heartbreaking, and impossibly hard. but yesterday, my friend @hopethroughthestorm sent me a photo of her paddle boarding in the ocean—and it made me so incredibly happy to see her doing something she has missed so much. to see someone that has gone through way more than her share enjoying something like that was absolutely heartwarming—because she’s so deserving. that photo gave me hope, and immediately something popped into my head: “reasons to keep fighting”. i’ve been in the hospital struggling all week, and i’ve started to think about why i keep fighting. with chronic illness, sometimes there is a fine line between hope and being realistic. there are things i’ll never be able to do again BECAUSE of my illness—of course that makes me sad. but i will have fun. i will keep smiling. i will find ways to enjoy myself even if i have to keep doing it in pain. i would love to know, what are your #reasonstokeepfighting ?