Відео

Trust me last hospital visit i went they blew 7 of my veins , i wish i knew about a picc line.

Zofran is my friend. My doctor also recommended Pepcid for reflux. I thought he was crazy-how can reflux make me vomit?? But turns out he was right. I have cyclic vomiting syndrome.

I’m so used to it at this point I rarely try to stop people anymore. I’ve straight up had medical professionals move my Rollator to the other side of the room to make space without even letting me know first

I just want to hug you you are so sweet I ♡ u

I have pots, I’m autistic as well so the feeling of it makes extremely anxious and the fear of passing out does too, I would love a service dog like Simon but I don’t need one I’m so happy you have him :) sending lots of love and spoons

Its the little things in life that make it worth it. Like my best friend taking my bag from my wheelchair when i said i was struggling to push and telling me "no wonder, this is really heavy for you, it should be easier now", giving me running starts so i can go flying down a sidewalk even with her bad knees because she knows it makes me laugh and takes the pressure off of my weak arms and bad shoulders, and pushing me/helping me walk when i cant anymore. Sitting with me when i have seizures, letting me cry when it all becomes too much. My parents reminding me before a trip to tell the people at parking that i have a placard and that I need closer parking, telling me that theyll always be proud of me and love me no matter what on the days i feel disgusting for being their sick disabled kid (im always worried about 'dissapointing' them by being sick), being proud of my service dog when she does something new, being angry when my doctors dismiss me and mistreat me. When you get a text reminding you not to overdo it, when youve slept all day and someone says "you really must be tired, you can go back to sleep, its okay." The world is so cruel but when the people you love do little things like that it makes you feel like you are still important and belong despite it all.

I’m so sorry love that you have to go through this, chronic illness truly takes everything we have sometimes, I’m recovering from a bad flare rn so I relate. Sending love and spoons 🥄 ❤️❤️

I have a puppy and I am Training it to be a diabetes service dog but how do you give it access to be a service dog?

Hey Lindsay!! I have a quick suggestion. When wiping down, i reccomend using purrel wipes. They are a bit more expensive, but thats what they use in hopsitals. My dad actually works there, and they do different experiments which brand works the best to kill germs. Im not just saying that cause my dad works there lol. Purrel is the mainstream sanitizing company in healthcare. Hope that helps, i know keeping everything clean is essential for autoimmune issues ❤

Im 21 and also diagnosed with SMA syndrome, i lost weight which is a very bad thing for me, but my dr didn’t recommend the surgery he said u need a diet to gain weight but i its really hard thing to do

So sorry for you. How often do these happen? Hope its not daily.

I got diagnosed last year, and I don’t faint anymore. A lot of Gatorade and swimming later, all I have is a bit of lightheadedness 🤠

Thank you so much for this video! It honestly made me cry because it was like seeing myself going through a flare day. I hate that you have to go through all that but I’m glad you’re advocating for people with disabilities. I felt like I was alone dealing with doctors who think you’re full of bs and having to adjust your lifestyle to your body. All that to say thank you!

I’m 39 and recently was diagnosed with SMA syndrome in June of 2024. I had been suffering in silence for 2 months prior. Started losing weight, having major stomach pains,feeling nauseous all the time, getting full after eating barely any food. So I’m a Navy veteran so I request to see a nutritionist and I requested to get a CT scan cause I knew something was wrong. I had surgery July 3rd was in the hospital for over a week. Surgery went well and I’m gaining weight back and my appetite is back where it needs to be. I have a feeding tube as well to help with my nutrition but things are getting better each day. It’s nice to know I’m not alone. I’m about 4 weeks post surgery and I still have some ways to go when it comes to gaining weight back but that surgery definitely helped. I hope anyone who reads this doesn’t feel so alone and do what’s best for you.

So if you don’t mind me asking, what effect does the seizure medication have on you? Since you showed you still have partial seizures

I hope you see this because I am a conically ill because of one of my diagnosis and I still love to do every thing that normal person does im 18 years old and on words along with different diagnosis I’m still living life i have lots of different Medical diagnosis that keeps on appearing as I get older so I have too take 3 medicine prescribe to me lots of vitamins for different reasons that i have been in the hospital for many different reasons and some i have to stay in the hospital to heal from sugars and they hade me taking bad tasting medicine in the hospital and outside of the hospital for after sugars medicine doesn't taste good at home and hospital visits to get things done

OMG MINIONS LOL

This means a lot to me. I have no friends because I am always so scared of failing them bc I cant predict my symptoms. So I just stopped having friends altogether 🤷‍♂️

Thing is, its so multifaceted! I think part of it is that people with chronic conditions have highly sensitive, reactive, inflammatory bodily responses. EVERY environmental change requires the human body to respond in order to regulate. Warm up cold skin, skin tanning instead of burning... All these processes (ie regulating temperature, processing UV rays) involve the body identifying "problems" to "fix." A body that is sensitive, reactive, and inflammatory is more likely to process [and respond to] a "problem" as a "!!PROBLEM!!." And then a "fix" is more costly for an already taxed system which doubles down on that! 100% everything you said... and all of it down to a fine, cellular level. Being a spoonie isnt just a list of symptoms specific to a condition... it affects everything. Sometimes i could say all of my cells' responses are sort of like poking a bruise! Hope I'm making sense. You make awesome content :-)

maryland!!

this is a really beautiful video 🫶 i hope you had a lovely time!!

I have seizures too (epilepsy) and I have to cover my eyes when movies have flashing scenes and i always miss parts I want to see 😂 do you have to do that too?

Better to feed them wet food and let him not have the west indoors all the time. Your gf seem to be a wonderful support.

I got fully diagnose with pots recently and it sucks all the stuff you said about pots I get as well

That cane is so damn cute🥹

Omg I bet that's painful love

That’s me after every syncope and adrenaline dump ❤️‍🩹

What do you usually do after seizures?

That is 100% accurate! Thank you for spreading awareness :) I have a question if you don’t mind. Do you now have a portable oxygen tank? I am so sorry you have to go through this… sending spoons :) Have a great day :) 💙🩵🥄🦓🥄🩵💙

there is one, they’re in danger and i can’t tell yet

This is so cute and for some reason I almost teared up

Are you usually tired after? It looks pretty painful. I couldn't imagine the dystonia episodes after that, and I thought dystonia was painful, and it is

I know its old lol but does it also cause heartburn alot ?

Ideal summer outing! That 🥨 made my little POTSIE heart happy 😂

Drive-in movies were fun. Glad you got to go. As you said going with chronic illnesses n you have a partial seizure. Have you ever had a seizure free day?❤

Me fr

I used to go during the summer as a kid! Fun times ! Now they’re all closed cause it’s not as popular anymore, it’s sad

How fun!! I remember going to the drive in as a kid and we loved it! Mom would pack hot dogs and candy, we’d bring our fav stuffed animal and cozy up to watch the movie. Of course we’d fall asleep every time though 😂

Not trying to get to personal but I’m wondering if you are around Maryland? I have a Bengies drive in here in Maryland

aww this seems like such a fun idea to do with friends :)

I got pots last year after Covid, and I’m almost 50! I hoped it was just menopause 😂! I have a bunch of dysautonomia stuff already ( gastroparisis, bladder dysfunction, pain) , and my doctor laughed so hard with this pots one, because as he says, it’s usually a young girl’s problem 😩. Keep moving and keep laughing! 😂

Hey I just wanted to let you know I really proud of you for posing a s seizure on UA-cam I’m I had to skip it just because I’m really in a trigger day but I just wanted to let you know it probably helped a lot of people

Trying to explain this to my family. It's hard.

I know what growing pains feel like and I would always get them in my calves but in the fourth grade I got terrible knee pain and I was painful walking standing or even sitting with bent legs. After SIX MONTHES of complaining I was taken to a doctor and he said it was growing pains. I continued to have this pain for a year and a half constantly day, night, every second of every day. I’m now 14 and a year ago was diagnosed with hashimotos and they said,” oh it’s just joint pain, once you get used to the medication it should stop” The joint pain never stops, it in my knees, lower back, hips, anckles, and my wrists and elbows when I have a really bad flare up. I’m now going to a rheumatologist to see if I have juvenile rheumatoid arthritis because my pain should have stopped when I started taking my medication and it never did

I want to thank you so much, you have no idea how much you make my day better. Back in October of 2023 I was diagnosed with hashimotos, then in January I was diagnosed with 2nd degree AV block in my heart. I’ve had medication readjusted about 5 times since my hashimotos diagnosis and I constantly feel dizzy and like I’m going to gain as well as joint pain on the daily and headaches that last forever. Earlier this month my doctor referred my to a rheumatologist to see if I have JIA. My appointment is in the next few weeks and I keep feeling as if more medical problems keep getting thrown on me but you have always been there whenever I have a flare up or I’m in a lot of pain so thank you for being there. You are making a difference in the world. Love you lots and hope you have a good day today 🫂

I hope you have a great birthday!! 🥳🎂✨🫂🫂🫂🫂🫂🫂

Crying rn, thank you for the reminder ❤❤❤

Your cane is so cute!

Hope you have fun, im going on vacation myself with my mom and niece in a few weeks for my birthday too my bday is aug 23rd I’ll be 24, i just got myself a new suitcase that’s coming in the mail since my old one broke, happy bday btw 🎉

Hi Lindsay how are u feeling? I learned a lot from your packing video. Austin is coming in 3 days I'm getting really excited. Your channel is always been a safe place for me. Send me some spoons for my upper endoscopy. I'm really nervous about it❤❤❤❤