I was diagnosed with Multiple Sclerosis in Sept of 2019. Since being diagnosed my goal has been to help others by sharing my story of what it’s like living with MS, Fibromyalgia and other super enjoyable autoimmune disorders. Whether you have MS or want to get filled in on what exactly MS is, you're at the best place.
I like to approach my story living with Multiple Sclerosis and other Autoimmune diseases UNFILTERED, because in all reality, hiding the truth doesn’t really help you guys. So here I go putting it all out there.
I’m a writer, blogger, motivational speaker, believer, Vocal Coach and Singer-Songwriter.
This is my story, what I strive to do with my new life and how I plan to inspire others through being warriors of this diagnosis.
For more info check out www.ahotms.com and don’t forget to SUBSCRIBE TO THAT BLOG
Thank you so much for this. I have new mobility aids and this (and your style, honestly) gave me the kick in the pants I need to embrace my better life with these tools. Thank you again 💖
I'm glad I came across this video I just turned 16 today is my birthday a few days ago my mom let me order some things online as my birthday gift one of the things being forearm crutches I have cerebral palsy I'm a tiptoe walker always have been surgery didn't work I feel like I walk fine part of me feels like I don't need a mobility aid which I feel like is true in most situations the reason why I thought considering one is because when I rest my hand on a table or the back of a chair for support well standing it takes pressure off my legs my right leg is weaker so I put all my weight on my left and also if i had crutches or something I'd be able to walk flat-footed I can't unassisted I never try to walk flat-footed but if I had something I could i have never used a mobility aid besides one time in physical therapy I was very little and the stereotype walkers are for old people freaked me out so I didn't tolerate it, the thing I'm worried about Is my parents approval they have told me in the past not to buy crutches I explained why I want to consider something and I was planning on doing with my own money my parents don't know that I've bought them behind there backs with there money... I'm not a rebellious kid this is the first time I've ever done anything like this and I'm terrified any advice? I've looked online and through reddit I can't find any situations similar to mine yesterday I sat down with my parents and told them I bought something they told me not to in the past and please don't be mad they didn't list forearm crutches I brought it up many months ago when walking and dealing with school was a struggle not just because of my mobility but the kids obviously when everything I ordered online arrives they will know but for now I'm not going to say anything I don't care that it's my birthday but I have some sort of guilt and spending time with my parents is hard knowing that they'll probably well there's a chance they could be mad or something I've never been the type to try and seek approval from anyone btw it might sound like that also regarding my safety of planning to use forearm crutches I've watched several videos I know how to size them correctly and have a well understanding on how to use them correctly use a railing when doing stairs the point of crutches is to help the weaker leg ect. Edit the more times I read this the more I feel like maybe some part of me does feel the need for approval and I'm in denial anywaysss I know this is really long the internet doesn't need to hear my whole life story but here's some important info I left out I have very very mild I believe spastic cerebral palsy I don't know for sure the only reason I know as much about my condition as I do is because of the internet I was diagnosed when I was 2 which seems to be when most people get diagnosed with cp I started to wear afos for my toe Walk up until I was 12 because my parents gave up I've asked them about it but I understand there like 2 thousand dollars per pair I'd need 2 and insurance doesn't want to cover them they don't think I need them (both insurance company and my parents) and or because afos are seen as a cosmetic aid or something I don't know what I'm talking about when it comes to insurance adulting and afos I've just been told this sorry if this is complete nonsense Edit i got the crutches my mom yelled at me when i first got them its been a few days they're still not happy but i use them around my parents i can walk flat footed and im working on trying to stand up straight its going great my mom claims she is concerned how the crutches will negatively affect my body so i walk for like 30-40 minutes a day but thats walking i haven't been able to do in years thats when i only use them im not aloud to bring them outside are house and cabin and to school i got my schedule for school recently if gym stays out of my schedule hopefully i won't have to deal with limping at all this year but im mostly worry that kids will try to push me downstairs again (yes that actually has happens to me a few times during last school year i don't get why people try doing it im terrified to fall down stairs) i can use the elevators but i use the stairs 99% of the time i hate school and my teachers no one cares that kids have tried to throw me down stairs and throw things at me one time i had to go to the nurse so they could tap my pinky and ring fingers together and give me ice because someone threw something at me it hit my pinky and it hurt so bad thats the first time i went to see the nurse because i got hurt they know me for being in sped and my lanyard that says i have cp that hasn't stopped kids from trying to make me fall down stairs unfortunately
hi, im 15 and i want to thank you for making this video, it helped debunk some fears... ive recently started using a crutch to help with my disability ((not ms btw)) and i love it, it feels so freeing !!! i cant walk properly without it and i was limping everywhere and it was just painful (+ exhausting), but with the crutch i feel like i can go wherever i want, like im on top of the world :D !!! But im disapointed, im disapointed and im mad that my doctors never recommended any sorta mobility aid, they've recommended amuptation before a crutch or cane.... ((idk what ill do in the future)) but for now, i feel free. but im still so dissapointed that years of pain could've been avoided if a doctor had just told me to use a crutch sooner... hell even just mention one. Im guessing its because im young, my mum ((whose a doctor btw)) says "its hard for a doctor to recommend to a teenager canes and crutches." even though in a sentance before she told me how she recommend old people canes ... Im just so dissapointed in the medical system rn. And the worst part is i got the idea for using a single crutch from an anime i was watching 😭 ((dont judge me im judging myself already))
Thank you so much for posting this. It's amazing to see and hear someone that I see myself in (power of visual representation is a real thing). I was diagnosed with MS almost 20 years ago and your video is the first video that really spoke to me. I am struggling with weakness in my right leg that makes it difficult to walk some days and I'm just starting to toy with the idea of a mobility aid. This has given me more encouragement to face my fears and get something.
I love that you had a brace customized by an auto shop! I was diagnosed with HEDS last year after being off work the past two years due to pain and fatigue, and then also getting a lovely tremor thanks to meds that were used to treat suspected fibromyalgia. I'm only 41, but that's almost old in the EDS community for mobility aids from what I've read. I tried a cane, but people don't move for young looking people on the bus. I got a 3 wheel rollator - the only one I considered cute and actually looked like I could do grocery shopping with it - but it's too wobbly when I have the tremor in my legs! It's so frustrating. I'm trying to be accepting that I need help like this, but it's so hard to find things that are stylish, functional, and that are affordable.
It can be hard to find mobility aids that work for YOU! There are many organizations out there that help with funding. Do your research! Ask around your area! I’m proud of you for taking the next step to protect yourself and better your quality of life. YOU GOT THIS. Give yourself grace. The ugly days are just as important as the beautiful ones!
I had to start using mobility aids when I was 22. I am 30 now and I've come to realise that I need them more than I need to worry about what I look like with it.
Hello..Blessings to you all. I am 81. I have relapsed from Lymphoma after 5 yrs. Found a small tumor on neck, under left ear. Biopsy then showed cancer in the tonsils. Started Feb 1, Rotuxin and having 6 Infusions. FEEL GOOD EXCELLENT Blood report. No side effects . I am 81.❤
I've been having a lot of hip pain lately and decided to buy a cane and I wanted to say thank you for having such a helpful guide for me! I really appreciate it!
I’ve people who are in my world who’ve compared me to both other people with disabilities and other non disabled people who they feel I should be equal to in life. I’ve been born with disability with chronic illnesses
What was supposed to be a part time mobility aid, my cane "Indigo" has now been my full time bestie because I need her around the house too. But I'm thankful I have a cane. I'm still getting use to it and its helpful.
Its so true, my brain hasn't quite caught up with my body yet. Many times my brain will say "come on, you can do it" But physically, my body won't let me. Not only has my brain not adjusted to this new way of life but also my family members too. Both are expecting me to do the same things and be at the same energy level I was at before I got sick with my autoimmune disease. I've just recently realized I have to change a lot around how I physically feel. Like something like grocery shopping, I can no longer spend two hours in the store, its too much on my body. I now have to either shop on the app and have it delivered or spend no more than 20 minutes inside the store just to preserve my energy, so that I'm not totally wiped out the next day. Its a lot to change and get use too but I'm learning to find resolutions.
Had a reaction my first round. Wheezing and shortness of breath. I didn’t feel like it was a huge deal, but the nurse did! Stopped it and I had to wait to restart. 2nd dose I had went well, but both of mine so far have been 6.5/7 hours long cause I have to have them low and slow. Next treatment is in June. Not looking forward to the days after again, I feel out of it/weird for almost a week
I added you to my public Playlist for it's NOT a big deal to those still trying to figure it out! I love babes with mobility aids too! Thank you for sharing! ❤
I just got this message from them- Well, short answer: Not directly. It is always a possibility from our webshop, but the shipment will most likely be the same pice as the rollator itself. Long answer is that we are working on finding an agent to help us explore the Indian market, since it is not very easy to break through due to their wish to keep to local manufactures. If we manage with a collaboration with an agent, the answer might be different in the future! 🤗
What exactly are you asking? Are you asking if they have a model to suit a larger framed individual? Or are you asking why they don’t have a plus size model?
This was such a useful video, thank you. I'm in my 20s and living with Ehlers Danlos Syndrome & Co, and I've been struggling a lot the past year with being TERRIFIED specific people (mostly from work) will see me using my walker or mobility scooter, rather than crutches. It's also weirdly comforting to see another young person with a chronic illness 😊
Thank you so much for sharing! Definitely takes bravery and courage to start incorporating additional mobility aids, and the majority of the time that’s really hard for others around you to understand. I found the transition to be a lot easier the more I was transparent to those around me about what was going on. The more information I gave them the better understanding they had, you got this!
I’m on my 3rd round of Rituxim! Hah! I get the itching! But really that’s the only side effect while infusing. It’s done wonders for me, I definitely feel better and no new lesions! Woo Hoo!! Don’t get me wrong, I still have the fatigue and other MS symptoms but they are not as intense. Oh and Everything they say about the weeks before your next infusion is true…”The Crap Gap” is real!! 😂
Have you used canes with a wider base so that it’s self standing? If not, where do you keep it when you’re at an event sitting at a table? I’m planning to use one for a wedding.
Great question! Ok So I love the question mark handle from NEO WALK because it can rest on your arm when you need it to. I also use one from Michael Graves Design that has a self standing foot base for this reason also. Nothing worse than dropping your cane a millions times and hearing it crash someone.
@@ahotms Oh yes I did. I've myself been kicking MS ass for 21 years now, but still there are times where the old me tries to creep back in and I just know that like you say I have to let him go and adapt and just keep moving forward. Thanks again for a great message and for sharing your story with the world. God bless you.
@@ahotms Oh you are amazing! Totally a fan! I am newly diagnosed so I am still in the learning and acceptance stage of MS. I just started with mobility aids but had to have cool ones too! Thanks for all you do!
Welcome to the family love! Neo walking sticks is by far my favorite canes. Byacre rollator is also my fav. Take it one day at a time. You’re not alone.
Thank you so much for this. I'm 37, diagnosed with MS in October and going through another flare. I bought myself a cane and you're psyching me up to go rock it at work. Thank you.
@@ahotms I'm replying again but on my work email. It actually went awful. I am a special education teacher in my 14th year teaching. I work at a charter school that is designed for students on the autism spectrum, and I love my job. Literally the moment I brought in my cane, a student walked by me and called me a cripple. It was awful. I pulled in the principal and our behavior specialist to talk with him. I haven't had a student hurt me to my core like that in years. I know he has a long ways to go as far as social communication and interactions go, but it really cut me to my core. I still believe in Maggie Smith's poem, "Good Bones," though. I'd highly recommend it if you haven't read it. "This place could be beautiful, right? You could make this place beautiful." I'm going to pick myself up and try again today. At least he said it to me instead of to a student with a physical disability. This world can be a hard and cruel place, but I refuse to give up. We can make this world better.
Brittany are you still taking Ritux? I saw your first infusion video but have not seen a video about you talking about this medication. Did it work for you?
Hey Marla! So I was on Rituxan during the onset of my diagnosis but a few months after we switched insurance companies then I started Tysabri. But since recently testing very very positive for the JC virus, we are switching me over to Kesimpta!
I got a four pronged stick because of my balance and weakness. I put it off for at least a year. It was the best decision. I can’t imagine not having it now. I’m still thinking about a rollator but they never look cool. Selma Blair has the Dutch bicycle style walker and I tried it but wasn’t comfortable enough for me. It’s a huge gap in the market, we need designers to make cool walking aids.
It’s been two and a half years since my diagnosis and I have come a long way but, I still struggle with self acceptance sometimes. When you mentioned theme parks it really hit home because I would love to take my son all day to Disneyland or Legoland but I know I wouldn’t be able to last that long. In other areas of life too such as dating or being intimate with someon, it’s hard.I am so glad you posted this video, I needed to hear this, Thank you
My biggest problem has been hanging on to my old self. I just miss her so so much. The grief has gotten better with time but it does sneak back in every now and then. Especially on bad days. Lately tho I have started using positive affirmations and meditation and have started trying to change my narrative and I am working on myself.
It’s easy to grieve harder especially on bad days. I remember when I could stay up until 11 pm. It’s 7 pm and I’m in bed haha and that’s okay! What works for you will continue to change as your condition does. Bend to the changes! Change that narrative love! Cheering you on!
@@ahotms thanks girl! 😊 Means so much! Looking forward to more videos ! Gonna watch the other ones now! Don't know how I didn't know you had a you tube!
I honestly like the question mark Handles from Neo walk the best. Second would be the foam grip. Neo Walk just came out with a unique handle also that forms to your palm! I just ordered one!
Thanks for this. Your video is both helpful and comforting. Wow... I don't have MS, but as a young, disabled, veteran this still resonates deeply with me.
In this video, Alan Macdonald, FCAP, A pathologist from Florida, and a well respected researcher goes over some impressive findings regarding Spinal Fluids of patients with Multiple Sclerosis. ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-EHVXJpDBcmU.html
Thanks for sharing this. I was just diagnosed with MS a couple of months ago and had my first Rituximab infusion last week. I was just curious to know how you are currently doing and has Rituximab been working for you? Thanks again!
Hi love. I have actually switched to tysabri but that was due to insurance switch. It’s been good so far!! Please don’t hesitate to reach out if you need someone to chat with. Always here to answer questions. I only have had 1 round of rituxan 2 1/2 years ago. I need to make a vlog on my current treatment.
@@ahotms That’s great that Tysabri is working for u! I’d love to hear more about your experience over the past couple of years on a DMT. It’s really comforting to hear other peoples experiences. I know MS is different for everyone but it’s nice to know I’m not alone! Because of Covid I haven’t yet had the opportunity to meet others who have MS. Take care! And love your tattoos ☺️
Hi! I also have MS and will be starting rituxan tomorrow. Not gonna lie... Scared a bit. If I have pain will they push pain meds through IV? Or if I am nauseas do they do phenergen? Did you have any bad bad side effects??
@@ahotms hmmm well as far as the rituxan im honestly not sure it’s working. I’m in the biggest and longest flare I’ve had yet. It sucks. The fatigue is real and is rough. How are you doing?
