What are HNPP and MCTD? // My Disabilities [CC]
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- เผยแพร่เมื่อ 2 ต.ค. 2024
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Here's a bit about my disabilities, Hereditary Neuropathy with Pressure Palsies (HNPP) and Mixed Connective Tissue Disease (MCTD), and what it's like living with them.
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I've got POTS (recent diagnosis, not sure yet if it's due to puberty or an underlying issue) and it's gotten to the point where my boyfriend just walks behind me everywhere to catch me if (when) I pass out. He's gotten very good at explaining it to other people when they inevitably start panicking.
Is MCTD similar to EDS?
Jessica you are a super queen! and i love your makeup could you do an everyday look video?
You look really different with brown hair.
Thank you so very much for this!!! My daughter (13 years old) FINALLY got diagnosed. we searched youtube and we got blessed when your channel popped up. My daughter also came out as a lesbian a bit over a year ago so she explained that she relates to you on so many levels. I know you gave her hope today after watching this, hope she desperately needed. thank you from the bottom of my heart, somehow it was like you were speaking directly to her right when she needed it the most. we are faithful new subscribers, absolutely cannot wait to enjoy more of the content you make and decide to share. I'm so glad she found this inspiration in you when it was most needed!! much love, Emily & Layla
Thank you so much for this lovely comment! I'm really pleased your daughter was able to find hope from my videos- I make them because I was a frightened 13 year old once who didn't have someone to show me I could live with my illness and still have a happy life. Best wishes to you both xxx
not only do i relate to jessica, im also a 14 year old lesbian with ehlers danlos syndrome (chronic disorder than can cause the usual chronic crap and im bad at explainations sorry) so hey! i relate lol
Layla Wolf i
Emily Wolf :)
I almost cried reading this
"But now, I'm married, and I own a house, and I have these two little doggies who I really, really love" was my favorite part of this video. Because I feel now like these are not unattainable goals. Thankyou
It's so refreshing to hear people like her talk about simultaneously being sick and having fulfilling lives. 💜
And... A baby on the way 💕
I’m not sure why I️ almost cried. Maybe because it is incredible difficult to get out of bed this morning. But this video motivated me. Thank you for sharing and encouraging us.
+Kluermoi you’re so welcome! I hope your day got easier 😘
Me too! I almost cry in the last few minutes when Jessica said those amazing words, I don’t know why but the words really makes me feel happy and I started to see lights in the end of the tunnel😍Everything will be alright😊
Yeah, I'm in a wicked flare up, all my autoimmune illnesses.
I'm watching videos with my pug, trying to get my mind off of the pain. (Bone,muscles,organs and stomach. Haven't eaten in 3 days. Slept 3 hours.)
I have two pride days this week and next. Of all weeks to get a huge flare up.
(Big day for my daughter. Her first Pride Fest. My husband is driving us all, thank goodness.)
I hope you have a better day.♥️♥️♥️
I have type 1 diabetes and nerve damage. Life sucks some times, but for me what is worse is how a lot of people accuse me of being lazy when I'm just sick, fatigued, and tired. Ugh..... If I didn't have a son idk if I would keep going.
PhatDookie 420 ,
I feel that way at times, going on for my kid.
People who tell people who aren't well, that they're lazy. Have no clue what we go through.
(My Gran, step Grandpa & Uncle are diabetic.)
Every flare, im supposed to be on bedrest. I listen to my specialist and my body.
I hate being called lazy, when clearly they saw me before my illnesses got worse and I had my hip replaced.
(I've dealt with it a few times.)
Hang in there.❤
“I thought I had to get better before I could have any of that.” Man, that hit me deep. Especially when I’m constantly getting messages (and telling myself) “you need to get better before...” all the time.
"It's also why I'm blind in this eye." OH HONEY. Oh my.
im a 22 y/o lesbian who uses a wheelchair and this gave me hope that maybe someone will love me someday
MYxTOURNIQUET someone definitely will, a wheelchair shouldn’t change anything. you are still 100% love-able!
Same except I'm not as old as you and I don't know my sexuality.
Being in a wheelchair won't stop people from loving you
@Phoenix Rutherford no, but it will probably make people reject you but then again those people aren't worth it.
I'm Bi and have been married 20 years and I'm a wheelchair user.
My disability is C-PTSD. I really relate to your comment of "Your goals will adapt to you".
I'm sorry to say that I started watching your video and thought "oh my God, with all of that, how come she's still so positive???" and then you said "Find the fun, find what makes you happy, give yourself a break, but keep achievable goals and just go for them. You'll be ok. Everything that you achieve from here on is going to feel much more sweeter and it's going to feel so much better than anything you've achieved before!"
This makes total sense!
You are an inspiration! It's so amazing the way you think and see life! I'm just blown away! This could've been a Ted Talk!
Going blind is one of my worst, rational fears.
I hope neither of us have to go through that.
Also, my friends/family forget I'm visually impaired all the time.
Mom says "what are you, blind?!!"
Me: "YES."
It's hilarious.
Hahaha That exchange between you and your mom made me laugh! Family is the worst soemtimes 😂
I do have eye trouble and wear thick lenses. Anyone can just think back to times they were in total darkness trying to find something. To think that would be permanent!
Me: *fails to see something because I am visually impaired*
Mum: are you blind?
Me: funnily enough, yes.
(This is a joke I'm not actually blind I just have shit vision lmao)
For a woman with so many disabilities she sure is positive and happy, I like that about her. Here I am basically with nothing wrong but still a sad sack
Skeptical Eye if it’s a significant issue (ie major depressive disorder) then you should seek help but it’s okay to be physically healthy but not mentally. everyone has their own struggles
Same actually some mental health problems
Why would disabilities make her sad?
Please don't fixate on how happy she _appears_ to be or compare yourself to her. Everyone goes through rough times and it can be easy to project a false appearance of positivity every when you feel like crap. My point isn't that she's presenting fake positivity, it's that no one ever knows what anyone else is going through, so we should all be kind to one another. Please be kind to yourself and find someone to talk to, a professional if need be.
yep. Love the Foz x
As someone with MD, asthma, vocal chord disfunction, scoliosis, rigid spine syndrome, and chronic fatigue I cried at the end of this video. I’m only 14 and all I used to think about it how I was never going to be a nurse. This past year I have turned my life around. I used to get Ds and Fs because I thought a future was unachievable so there was no point in trying. I decided that wasn’t true and now I have all As. I’ve already started preparing for college. Sure sometimes my life sucks but I get through those parts and start again. I cannot believe I have found another person like me. We have different disabilities but the same outlook on life and I think that is the best kind of similarity. Thank you for making my day.
Superrandomperson ! I don't know what country you're in but I wanted to encourage you to work hard in school and then University and get your nursing license!! It's the best accomplishment you'll have. The best part about being a nurse is that you don't have to be on your feet working in a hospital. You can be a traveling nurse, a visiting nurse that goes to someone's home, you could work for a registry and pretty much make your own hours... So many options that I didn't know about. I have multiple sclerosis and because I didn't know about those options, I stopped working.
Best of luck to you and Merry Christmas!
From California, USA
I also have a vocal chord disfunction, in my case chronic and permanent musculoskeletal dysphonia. I was mute when I was young, and even when I could speak I wasn't used to it so I didn't start speaking to others until the first grade. I'm fine now and I haven't thought about it in years. I can get an operation to fix it but I don't want to relearn how to speak when I already made so much progress. I also have learning disabilities. I'm 20 now and in a STEM field, and one of the top students at my university. I believe that you can be a nurse and I think we need nurses like you, who get what it's like to be a patient with a scary condition.
prove them all wrong kid
Superrandomperson ! so proud of you!!
You are amazing, that is the best outlook to have! Congratulations on getting good marks in school, you've clearly worked hard & deserve them! I used to feel down on myself & hated my "broken" body because my life wasn't working out how I'd originally planned. BUT life is what we make it & we can change or adapt our plans to fit in with what we need and that's ok! Sometimes, things take longer but that's ok too! Like they say in Alice In Wonderland, sometimes I do six impossible things before breakfast. Well, for me, that may be eating, showering, getting out of bed, putting clothes on etc - I celebrate everything because my conditions make existing so difficult that I now view it like no achievement is too small to be proud of or celebrate 💕
I love your ending words on how everything is going to be ok! I have Crohn’s disease which has mainly led to me being exhausted and staying in bed for most part of the day. But I have an amazing girlfriend and pets, a beautiful garden that we created ourselves, trying for a baby and starting a publishing business. I feel so lucky and loved but some people have a really hard time getting that because I take these really long naps.. It’s so comforting hearing your words, it helps me to stay grateful. So happy Stevie linked your channel yesterday, damn you’re badass. Hugs from Scandinavia
Hi! I have Ehlers Danlos Syndrome but I also have POTS! It's really cool finding someone else with one of the same conditions as me. I'm eighteen and I found out when I was about fifteen, so I'm still relatively new to this. I somehow didn't know about the caffeine thing, so I'll have to remember that. Thank you for being here and making videos, it's really nice to know that there are other sapphic people with disabilities on this planet.
Hi Cat! I'm just here to share a bit of happiness, so pleased you liked the video. Stay strong x
Cat Hitachiin Hi!!! Do you watch Simon and Martina? Martina also has EDS and is such a wonderfully optimistic, motivating person. Check them out maybe? Best wishes!!!!!!
I also have eds and POTS!! I found out about my eds about three years ago when i was 12, and i found out i had pots only about three weeks ago (im now 15)! This coment made me really happy since its really hard to find people w these conditions (except for my mom haha). I hope you are having a wonderfull day!
Try the caffeine carefully! It makes mine worse.
Cat Hitachiin I have both of those also! I’m 21 now, but was diagnosed at 16
Thank you so much. I am a woman that has a laundry list of chronic illnesses. Your videos help me so much when I struggle to find the light in all this muck. You are awesome.
as a medical student I am extremely fascinated by this! you explain this so well! really great coming across your video! you're great!!
Thank you x
same here
You’re a legend, like an absolute angel legend ❤️
The pep talk at the end made me cry, in a good way. I've been going through a really rough patch with my health (and, subsequently, my mental health) and you managed to say exactly what I needed to hear! Thank you 💗 (and since you're a hugger, ::hugs::)
Your conditions are fascinating. Well, I find pretty much all conditions academically fascinating. They also sound horrendously frustrating, and I'm in aw with how you're always so positive about things!
They have a lot of symptomatic overlap with several of mine as well (though, yours seem to be more intense), which is why I was so curious about them! (I have too many conditions to list here, but I can give you my blog link if you want and you can see what they are.)
I also have some sort of dysautonomia... I was diagnosed with POTS two years ago, but my new cardiologist suspects I may have something else (I have always had orthostatic hypertension, never hypotension, and my diastolic bp is impossible to control). The temperature misregulation is by far the most frustrating part for me!
Anyway, thank you so much for making this video! It satisfied my nosey little curiosity :-P and that pep talk was just what I needed this morning!!! Best wishes 💗💗💗
Sorry I missed replying to this earlier lovely, I'm really glad this video helped you to feel better. I'm here whenever you need a pep talk! ::hugs:: x
Your speech at the end made me cry. While I personally do not have physical disabilities, I struggle with chronic mental health problems. What you said about adapting and that you don't have to be 100% healthy to achieve your goals, find happiness and love, gave me so much hope. I needed that, thank you so much.
Geez Jessica why didn't you pick better parents!?
I jest because when I took a metabolic disorders class in my undergrad, the professor would always say "...and they should have picked better parents!"
Ha ha ha, my own parents say that! x
Jessica Kellgren-Fozard I just found your channel and I have to say you are really incredible and brave to talk about your conditions. I have some questions: Did your parents previously know that they are carrying these "wrong" genes or did it only became known when the doctors diagnosed you??? If they didn't know how they reacted???
I'm sorry if my questions are too personal....This video just made me wonder :)
I have ulcerative Colitis, POTS, endometriosis, and Hyper-mobile Ehlers Danlos Syndrome which has really made me worry about my life. I’m 23 and had to leave university due to my health issues and have been struggling to stay positive. These health issues cause CFS and new issues seem to keep popping up every so often. Thank you for being so visible, positive and showing the world that people with disabilities can still live a happy, successful life ❤️
I have POTS too. I'm on a medication called midodrine that helps to constrict my veins. I used to not be able to stand for more than 5 mins without getting all weak and dizzy and almost fainting. And I always had no energy. The medication does help. Its good that you're educating people. You seem to have a very positive attitude.
Thank you! Glad you've found something that works for you xxx
For someone who has cognitive issues, you are incredibly quick. To have to process what everyone is saying both in SSE and BSL and through lip reading, that takes so much incredible brain power. I've been binging your videos for the last half hour or so, and honestly, I think you're an absolutely remarkable person. You need more followers, you are absolutely a champion of your own life, and it's so amazing.
I now see that as a writer, I need to write more people with disabilities that are just a part of their normal life, because you are the antithesis of what people normally think of disabled people are. You are a beautiful, wonderful, and strong woman, Jess. Thank you so much for sharing your story and helping spread the word, because without this, I wouldn't have known how incredible you are, and how incredibly rewarding it can be to suffer with a disability and power through it.
"don't let me hug you.. i'm a hugger.. i will hug!!!!! ... DON'T LET ME HUG"(4:46)... lmao!!!
haha! I'm a hugger what can I say...
julius p I read this comment as it was said so weird!😂
That made me smile as well 😀
Id will hug Jessica🤗
You, my dear, are an inspiration! I don't mean in the "disability porn" sort of way. Your open, frank discussions of your issues, and other disabilities, opens peoples' minds to the others around us. When I first started watching your videos, it was about Autism, which both of my sons have. (And, if I were growing up today, I would probably be diagnosed with it, as well.) I didn't even realize you yourself were "disabled". You are so bright, cheerful, and beautiful, that I thought that you simply made handicap awareness your own personal crusade. (One of the 1st merit badges I received in the Boy Scouts (way back in the 80s) was "handicap awareness", and I did volunteer work at a local nursing home in my teens. There were 2 Autistic boys in my scout troop, and a boy with CP in my church who I helped with acolyte duties. Both of my parents and my wife are hearing impaired. Perhaps because I was exposed to disabled people from an early age, that's why I never really thought about it very much. It didn't freak me out when a classmate had tourette's, which my older son has, even though many of our classmates were terrible to him. Keep up the great work, and keep your cheery, angelic disposition!
So not only are you deaf, you have also experienced being blind AND paralysed (maybe just arms but still PARALYSED) and you are still so positive, I love you and I am so glad I found your channel today.
JUST her arms? For a year and a half?
DolliLoxz I am completely paralyzed in one of my legs 🦵
I have no idea how I stumbled upon your videos but I absolutely love how you just seem to want to live life to the fullest and not let these disabilities affect who you are or how you live.
You have a really lovable, authentic personality and a wonderful ironic sense of humour and seeing a few of your videos has really brightened my morning.
Thank you for being awesome and sharing this with us. :)
Definitely cried when you said that dreams and goals will adapt with you. Thanks for this.
I hope you understand that you are a hero. I don't complain often about my medical conditions but sometimes I do feel sorry for myself. I shouldn't, though. Life is a gift and I should never let my mind wonder off in negative directions. You and your positivity are an inspiration.
Just found your channel today, and I'm hardcore binging.
I freaking love you gurl, your spirit is so inspiring! And also, your accent!!!!! I DIE
Thanks lovely! x
Asmita Dasgupta literally same ong
I needed to hear this... especially in the middle of (what my mom and bf call) a disabled breakdown. This made me cry happy tears
I admire you greatly!
Thank you x
I don't have your chronic illnesses / disabilities but I have IBD, I had such big plans as a teenager but was 16 when I got ill. I tried for 3 years to do my a levels, eventually had to stop and have lots of treatment and surgery, but now I've nearly finished an Access Course (only one year course, two days a week) and have an unconditional place at my first choice uni! I may be a few years behind my friends but life finds a way! I started watching you for the vintage, but subscribed for your personality and because it's so refreshing to watch someone else with a disability
Best medical explanation of deafness! I laughed out loud. Each of those disabilities can be a struggle on their own to deal with and the combination just can make it that much worse on any given day. I'm so glad you have adapted to the new life and have made it your own! You have a lovely wife and I'm so glad you are happy!
Ha ha, glad you enjoyed it! I definitely have an amazing wife and she always pulls me through x
Thank you
for giving heaps of hope, giggles and faith in possibilities
When you you said don't need to be cured to reach for goals a💡 went off in my head
THANK YOU
proved your own rule : "the internet can save you"
They told me I had "a very common condition in women your age which basically means your blood reflexes are slow. Get more exercise and you'll be fine." and then the doctor left. Only thing I've found that helps is chocolate/soda. I was so weirded out by this! I was like "why do I have to eat chocolate to not faint? And isn't sugar rising and falling going to make it worse? My main doctor thinks it's sugar intake. I shouldn't be doing this! But I have to go to class..." So I kept doing it not knowing why just knowing it works. THANK YOU FOR CLEARING THIS UP FINALLY. Omg I thought I was going mad.
Definitely not going mad! Make sure you talk to your doctor about PoTS x
I stopped eating sugar for a couple of years.. I started again because i got sick and tired of crawling around blind on the floor. Pepsi max and caffeintablets works wonders to.
I could seriously listen to this lady talk all day. She has the most amazing soothing voice!
Your issue with your blood vessels sounds mildly similar to something that is have, but mine is that my blood vessels all dilate when I remain upright and still for long periods of time. it's caused my heart to stop at least once.
but you are made of awesome. You are also goals
+Ailin R Well that sounds nasty! I hope there's something you can take to help with that 💕 also, you are lovely and thank you xxx
Your videos keep making me cry. You're an amazing, inspirational person and I will do my best to take a lesson from your joyful and happy acceptance of chronic illness.
You have the most beautiful voice 😍
Sad part is she cant hear her beautiful voice
@@shyannemarie7585 from what i understand she can but not what she's saying and it basically just sounds like really foggy noise
I suffer from mental illness rather than physical disability (unless diabetes counts), but this video inspired me, and helped make my crappy day brighter.
Jessica, there is only one word to describe you and it is lovely. Everything that is “wrong” with you is what is also "right" about you; it forms part of who you are. I am not thinking in any spiritual sense simply that illnesses are life experiences and through them we, as you say, learn and adapt. Health is often assessed in purely medical terms but what is the benefit in being a sports car if one has no destination. You strike me as a Morris Minor, it may take longer to get there but by golly it will get there and everyone will enjoy the views along the way. Just keep doing what you do so well, being you x.
That is an excellent way to describe me and ill people in general: "it may take longer to get there but by golly it will get there and everyone will enjoy the views along the way"! Totally nabbing the Morris Minor idea for future explanations to confused people. Thank you x
You are welcome. Is there any connection between MCTD and EDS (Ehlers Danlos Syndrome)? I ask because I read something about POTS and EDS and some of your symptoms sounded a bit similar to EDS.
Yes there is a link in that they're both connective tissue disorders- we share a lot of symptoms!
I was going to ask this question! My roommate has EDS and I attend a lot of her appointments with her. It was great to hear your perspective.
I was listening to (for lack of a better word) your list and trying to understand how each thing affected you and picture how it changed how you interact with the world compared to how I do and how it may affect the way the world interacts with you and then you got to chronic fatigue and I just started crying. I have that. Thanks for the pep talk at the end. You can’t keep waiting to get better, you have to adjust your goals and adapt your life. 8 years in and I still need to hear that. Thank you.
Just found your channel, and binge watched a ton of your videos... you are truly inspiring and beautiful, inside and out!
Thank you so much and welcome to the channel! x
Aside from the interesting material, one of the many reasons why I watch your videos is that your accent is so soothing
Hi, thanks for sharing. I was just diagnosed EDS type 3 with some overlaps, genetic testing still on going. I also have PBC, autoimmune attacking my liver. Amazing how the body works. I wish you all the best.
Amazing isn't it! Wish you all the best as well x
That was the most beautiful message you could possible give to someone who was recently diagnosed or fighting with something, what an amazing women!
I live in the usa so different words are used fpr different things but this video is the closest thing i have ever found to my symptoms in my life i have rsd and a unidentified auto immune disorder and have struggled with these things forever with no relief and my mother just told me she tested slightly positive for hnpp and that her family has a very dominant hemochromatosis trait as well. i feel like my years of suffering have all come full circle and I am so thankful you made this video, I will defiantly be bringing this up with my neurologist😄😄
Aw, you're welcome. I hope you get the answers you need soon! x
Your videos are so helpful both on a personal and professional level. It's so good to have someone telling you to perk up a bit because life is what you make of it, not matter what the universe throws at you. It's also so important to be reminded, as someone going into the medical field, (A) to just be a decent person and treat EVERYONE who shows up as an individual worthy of respect, and (B) not to rule out rare conditions just because you're not likely to see them. MCTD has been discussed in lectures at medical school as something nebulous and only relevant in how it will be tested on licensing exams, so having someone to humanize these kinds of conditions the kick in the ass all of us need to think about why knowing about them has real life importance. Thank you for being so open and willing to share your experiences!
PS I have been binge watching your videos. You and Claudia and your fluffy children are so sweet and entertaining :) You guys are seriously my relationship goals lol. How did I not found your channel earlier??
Thank you for sharing something so personal about yourself! You are so positive in spite of and I admire that!
Thank you 💗
You seem to be such a great person. The last two minutes almost made me cry 🙈 One of my best friends was born blind and he's a great pianist. I'm always amazed how he manages life.
I was diagnosed with cancer at 21 and am struggling since. Now I started immune therapy and it's really not nice. Watching your video gave me hope. This is part of who I am, but at the moment I can't think of anything else... It has been 5 years now and it scares me that the disease can always come back and surprise me. It takes so much patience.
Love your style! And the attitude 😊
Where do I begin? The last 2 minutes of this video hit me hard. I've recently been diagnosed with Ehlers-Danlos Syndrome and I'm losing my ability to walk and becoming more dependent on my wheelchair. I'm really struggling to find a job (over 300 applications in 7 months) and I was close to giving up on everything. I should give myself a break because I've been so hard on myself about everything since I finished university and having my disability at 23 years old (not that disability discriminates against age), but I had all these plans and now they're just gone... Nobody plans for a life where they become disabled, but if I've learned one thing, it's that you can still have a life!
Thank you for your inspiring words :) They mean more than I can express. I love how you try to make light of your disabilities and use this platform to inform and educate, all while looking absolutely fabulous :)
im also 23 and been bedridden for 18 months and sick since 17 ( made it a couple years into college before leaving but wish i kept gong bc i got so so so much worse). I've been diagnosed with eds as well, pots, 4 autoimmune diseases?, but they cant ecpain neurologic problems or sight or twitching or anything.its a struggle... i feel so alone. you rock, I'm glad your still going for it and i wish i had tried harder before ( to be fair i did try work, ect but was already sick disabled and undiagnosed ( listened to a couple doctors that just shrugged and assumed i was exaggerating i had tumor remove surgery at 15 and learned to walk again and was fine i don't tend to exaggerate). thanks for sharing.
@@kookoo4pandas grr. I have a doctor as well who doesn't take me and my symptoms seriously. I am changing him soon.
Hello. Fellow Ehlers-Danlos and POTS person.
I know this is an older comment, but you should look up Simon and Martina here on YT. Martina has EDS and she often talks about her experiences. And she has a community that also often talk about how they build a ladder every day to give themselves the tools to be happy.
I have so much respect for you, my goodness. You are one strong lady.
I consume a LOT of caffeine, and sometimes I notice when I stand up quickly, I feel like there's too much pressure inside my head for a few moments. After you explained about caffeine being a vasoconstrictor, that makes a lot of sense.
Malaise "you body tells you something is not right, but it does not know what.."... so right!
I really needed this today, thank you sooo much jessica!!! I'm so glad I found your videos. You are like a little fairy of positivity I can call everytime I feel down❤🌹
The advice you give at the end can be used by anybody. Thank you.
I'm so sorry, sweetie!!!! You are SUCH a beautiful, wonderful & amazing person. To be so up-beat, positive and - even if you have to push to show it - B-R-A-V-E, is a huge task. But you have figured out how to deal with it (an understatement, I know) the best you can and go on from there. I know that life's not what you had planned but, as you said, you are "really proud of how far you have come". And that is what is important. And look at you now.... encouraging & inspiring others across the globe!!! What a blessing!!! I know & understand what it is to be thankful for what others so easily take for granted: sight; hearing; not hurting so much you want to just lie down on the couch, cradle your head and sob all day every day; not having yet another (fill-in-the-blank-body-part here) fall out/swell up/just QUIT because of (fill-in-the-stupid-blank again) autoimmune disease. But we can't give up. Even tho sometimes we want to, we really REALLY want to. You are beautiful. And you are such a cute couple!!! Thank you for sharing your struggles with the world; you could have just whined about it but instead you show up with your usual sweet smile in all of our in-boxes! You are a ray of sunshine and you need to know that. Thank you for your incredible personality, which has been made all the more lovely by all of this. Good wishes from Texas!!
Thank you for such a lovely, lovely comment! You've made my day 🌞
Wow girl you are dealing with a LOT! I literally just found your channel and I am in LOVE with your style, your accent, your personality. You’re very strong and I am so pleased that your still going along, happy as Larry. I hope one day to be as together as you are, you’re an inspiration x
Sometime I find life hard with my mental illness but when I see you, it really show me a new perspective on life.. And you're so positive about all of it!! Much love ♥
jessica, i discovered your channel recently and have been really enjoying your videos but as soon as you said you have POTS, i almost burst into tears. i have it too and i've never encountered anyone else who does. you seem to have it more severely than me (which, that sucks - i know how difficult it is to deal with even lesser symptoms) but even so. nobody seems to know about it, not even doctors apparently as it took about 5 years for me to get diagnosed, haha (not)! it's incredibly difficult to deal with and i feel really alone with it, as the bloodflow issues in particular mean getting up and out of bed in less than about an hour without keeling over is near impossible, and it makes me constantly exhausted, and my school can't make any adjustments to my schedule to be able to accommodate for it apparently! good times! paired with anxiety/depression i feel very alone in this condition so discovering you, someone who has it and still is beautiful and full of personality and in a happy relationship and seemingly managing quite well considering your health circumstances and is vocal about your disabilities is incredibly comforting and encouraging. thank you for speaking out about POTS. i think you just made my year.
Izzy Frost I completely understand the struggle with pots. I’ve had pots since I was 12 and I’m still trying to get used it.
I have the the subs on all the time... I don’t have any hearing loss that I know of, but it helps me catch everything people are talking about because I have problems concentrating and it helps me to concentrate on what people are saying.
I love your attitude. I also love that you can make POTS and chronic fatigue syndrome sound fun lol
ha ha, thank you! x
I’m honestly so awestruck at how amazingly you handle life and how positive you are and even though I just discovered your channel, and I just want to say I love you and your content and I hope many great things come your way. :)
She's so lovely.
But my question is.... Who are the 13 twats who gave this a thumbs down??
Ashlyn Ashlyn maybe people gave it a thumbs down to show they dislike all of what Jessica is going through. Just because someone dislikes a video doesn't mean hate.
Wow! Huge respect for your story and humble attitude towards the difficulties in your life. I wish you much happiness and comfort! You are inspiring!
I always assumed you had EDS (because I’m an asshole who makes assumptions 😂). I’d never heard of MCTD. Thanks for this. Very informative.
My best friend has EDS and hearing her describe her MCTD makes me want to look that up to see if my friend has that as well or if it's just familiar circumstances. Gah.
A lot of people with POTS have EDS
She's now been re-diagnosed with EDS because she meets the criteria and it's a more helpful diagnosis because _some_ doctors have heard of it.
Coming back to this video after a long long time... Stroke me the first time I watched it and still at this moment.. So strong, so inspirational, so positive.. She makes lemonade out of sour lemons of life, and if she can do it, there's no reason why any of us cannot. Jessica, I hope you will forever stay strong and your conditions will be stable as you have control over, lots of love.
Your eye makeup is HELLA fine, damn girl!! Also as a young gay girl watching you and your wife is the best, y'all are a gorgeous couple
ha ha, thank you on both counts! x
All my issues are just my brain being unhelpful in creative ways, but I think I needed to hear this. Thanks.
So here I am almost crying. That motivational part at the end got me.
I have bipolar disorder, and although it's an invisible disease it is very serious. You get a lot of physical symptoms: insomnia, you sleep and don't feel rested, back pains, lots of other pains, weight gain, lack of memory. And of course the mental ones: depression, anxiety, suicidal ideation, self destructing habits, guilt, lack of accomplishment, panic crisis. I kinda know what you feel, in a much smaller proportion, because living with bipolar is also trying to build a castle in sand. Your castle seems to be holding on really well.
Oh my god, you are a genuinely amazing person. I’m in awe of how you don’t let all this crap make you bitter or resentful. I don’t even know what to say. You are a beautiful human.
I really love how most medical conditions are just like yeah my body just kinda feels like being mean.
As someone with Fibromyalgia, I totally get the 'new symptoms popping up randomly' thing. I also understand the sudden loss of mobility as I get weird attacks that make movement nearly impossible it hurts so badly. It's like my body is suddenly rusty and moving breaks the crusty rusted bits and sqeaaaaaks. So much crap is comorbid with it that I've lost count and staying motivated takes so. much. energy. I really do try to think of ways to keep me happy but sometimes days are very dark up there in my brain. Add to that my increasing loss of vision and an incredible fear of being eventually unable to draw or make jewelry and I'm sure you can relate. Thank you for being such a wonderful source of inspiration.
Health issues aside, I'm very glad you've found a way to find your happiness. God bless♥
I’m just an average 14 year old girl who is looking thru random videos for her own amusement. Somehow I found the words you said on the last part of this video to be the most uplifting and motivating thing I heard of and I just ಥ_ಥ bless your soul-
I have chronic illness and I really really needed to hear this, thank you so much❤️
Jessica: you are so classy, beautiful, intelligent and inspiring I am absolutely in awe of you whenever I watch your videos! You've got yourself a fan in Spain 😊 Also, you are the most feminine lesbian/bisexual I have ever seen, so thank you for putting yourself out there so that people can realize not all of us are butch! 😂
Much love x
You're welcome and yes we LGBT women come in all shapes and styles! 😉
Catalina Velasco she’s really the most feminine bi sexual you’ve ever seen?
Catalina Velasco she’s not even bi lol she’s lesbian
It is heart warming to see that are able to experience so much love and joy despite of your disability, and that you are taking the time to create these videos to inspire us all. Thank you!
I tried getting tested for POTS (due to having a lot of the symptoms and people who I know have POTS said I seem like it's highly likely that I do) and idk why but my doctor's just refuse to let me get any testing at all and it's so frustrating. Their main excuse was that I was too young (I'm 16) despite being able to develope it from like 14/15 or something like that and these problems started actually appearing when I was 12ish and just got worse but like yeah. My doctor's just refuse to do anything. Like one year (I was 11 I think, in Y7) I got tonsillitis about 14 times and a lot of the time developed into strep due to my body not accepting the medication and I missed over half of the school year and my mum still had to fight for me to have my tonsils removed (I got it eventually and I've never had tonsillitis again).
find a different doctor. I just turned 17 and I was diagnosed with POTS a year ago. age is a factor but it can manifest in teenagers, though the diagnostic criteria changes slightly if you're under 20.
@@notebeans3134 I don't really get a choice in doctor. We just get whoever is available at my doctors office when I go
@@dinothepenguking8824 you need to find a dysautonomia clinic, general practitioners aren't able to diagnose it and most won't even know what it is. they also don't have the equipment needed to test for it (tilt table, for example)
@@notebeans3134 aye - I know they tend to have it at hospitals and stuff and like I was mainly just going for a referal to get tested properly although a doctor won't do that unless they HAVE to because it goes out of their wage for some reason. I couldn't even get them to prescribe vid D tablets when a blood test showed I was severely lacking (and ended up having like 18k UI twice a day - idk how much that is but it seems like a lot)
Same thing happened to me. I started getting symptoms around 12 or so. I wasn't officially diagnosed until 18 by the only doc I actually liked. He put me on Midodrine (which will NOT for every case of POTS. It just happened to help my kind of POTS). My faith in doctors was completely destroyed. I'm so sorry that you can't find a good doctor, but a couple things that may help you deal with POTS:
Drink caffeine, like she mentioned. Caffeine helped me SO much.
See if you can get your hands on some compression stockings. They are ugly, but they can help.
EAT SALT. Normally, too much salt is a bad thing. But omg, do NOT take salt out of your diet for some reason. In fact, you should probably have more! Salt helps retain water in your body, so have salt, drink water, feel better. Just don't completely overdo it.
Avoid milk? And dairy. I can't remember why this was an issue, but for some reason, milk and dairy would throw me into POTS Hell.
Excercise!! Don't overdo it, and don't hurt yourself, but going on walks will help keep your blood flowing. I did ballet, which helped me. It "trains" your blood to keep pumping in your body.
Things to look forward to:
I grew into POTS. I don't have it anymore. For me, it went away halfway through pregnancy. I still have some anemia-like symptoms and an occasional headache, but everything else is gone.
If pregnancy isn't in your future, there is a very high chance that you will grow out of POTS as you get older.
Thank you so much for being so honest. I have non epileptic seizures due to a whiplash injury 6 years ago. For 4 of those years we had no diagosis and it was so so scary. But just as you said making smaller achievable goals I too managed college and Uni. I was in a wheelchair on and off the whole time and often used a walking stick. When you spoke about how lucky you are, it really struck a chord. I too am fortunate to have a very wonderful support network especially my boyfriend and mum. Thank you for helping make disabilities ok!
You're so freaking hilarious! I'm glad youtube recommended you so I could subscribe. ❤️😎👍
I have both ME and M.S. Jessica, and like you I live life to the full within my limitations and choose to be cheerful. I also share your love of vintage fashion.I hope you have more good days than bad days, but your advice and experience of adapting to what life throws at you is truly inspiring. Having chronic illnesses is no excuse to look frumpy or go around with a miserable face as that isolates you and pushes people away. I'm older than you with two daughters, but I love your videos. Take care of yourself, as I know you do. I will now look up your medical conditions, so I can be more informed .
“*Sudden moment of realization* Deafness! I’m deaf! I forgot about that!” Honestly me too, sometimes I forget that it’s a result of my conditions
I don’t have any of the disabilities you taught me about, however I do have Multiple Sclerosis. The amount of similarities between MS and all of the disorders that you mentioned are absolutely astounding. My body attacking itself, myelin being shot to hell, chronic fatigue, paralysis, blindness, deafness, heat sensitivity, stumbles/falls, esophageal issued and literally everything. I help run a local support group in my area for those impacted by MS and I will be sharing this video with those who attend. Yes, my disability and your disabilities are different but the way you talk about keeping on with your life and how it will all be okay is wonderful! I try to keep that mentality, but as you know from you living with your disabilities, we have our days and it’s hard. I’m currently in the middle of a relapse, where my symptoms are getting worse, and I needed to hear that. Thank you.
Also a pots sufferer took a long time to get that diagnosed along with chronic fatigue. This was really really comforting. Thank you *hug*
sophie johns me too!! I hope you are doing better now!
This was so interesting! I have Ehlers-Danlos and have relatives that were diagnosed with MCTD in the long long ago and now I can see why. So many similarities. Thank you for sharing. The message at the end is beautiful.
It's always hilarious hearing other disabled people talking about their genetic syndromes/disorders/whatever with sarcasm and humour :') I have Ehlers Danlos Syndrome, which is a connective tissue disorder that is eerily similar to MCTD. Actually, they are EXACTLY similar with all their symptoms and what have you; I'm wondering if they're connected (ha!). Including the neurological problems, because with EDS you're 10% more likely to have neurological problems and my brother with EDS developed Multiple Sclerosis because EDS affects the collagen and do you wanna know what myelin is made of? COLLAGEN.
I also have hypermobile eardrums which can warp how I hear sounds, so I have hearing issues and auditory processing problems which my neurological problems contribute to, cheers.
I also have POTS and chronic fatigue and I dislocate or partially dislocate my joints every day and I have general autonomic dysfunction which gives me random fevers also... so it's really nice haring another person taking the complete mick out of it!
Dear lord, we have so much in common! Glad you liked the video, I always think that finding the innate humour in being disabled is a very good thing (it certainly makes me feel better) I like your take on life too! x
You are such a trooper... Your parents really set you up to win with these genetics my dear! But you’re still here!
I love your humour and comedic timing ahaha subbed!
"....and that's also why I'm blind in this eye." Girl! This list! I'm blown away. You're an incredible human being and you inspire me so much! I've developed a couple disabilities in my life recently (won't disclose them) and it has definitely taken a toll on my confidence in the future I once strived for. I've definitely been struggling against it more than trying to live with it. It just feels like someone has dangled my dreams right in front of me and right when I was about to grasp them, they were yanked away, never to be seen again. So I guess what I'm saying is that this video has been a nice kick in the rear for me. Thank you. Because it is going to be okay.
I have CF, asthma, CFRD (CF related diabetes) CFS, (OMG, that is a lot of the letters c and f.) and liver disease. Your videos have helped me so much! Also, unrelated, you remind me of Mary Poppins😂😘
@Briana Finian - That is such an apt comparison!
This video is so inspiring. I love to see how happy you are despite these struggles, it's so uplifting.
that sarcastic tone whenever you mention a symptom and you’re like “it does it’s own thing lol” that is the epitome of being disabled tbh I felt that
By best friend and I both have chronic migraines and this just made me cry
I feel like I can never complain again 😭😱
Please don't feel that way! Just because someone doesn't struggle with health problems doesn't mean their problems are invalid. As someone with it a disability, it makes me sad when my friends treat me as if they can never complain or talk to me about their problems. It makes me feel like I'm not a whole person, like I'm so delicate I must be treated with care. Your problems are important too! (Obviously, this doesn't mean saying things like, "Well, if you think THAT'S BAD, let me tell you about the one time I did " That's one-upping, which no one likes, disabled or not.)
Star, I totally agree! I have a few disabling conditions and some people in my life will start explaining about their problems and then abruptly stop when they remember about my issues. They say things like “Oh, but it’s nowhere near as bad as what you have to deal with” or “I don’t want to burden you when you have so much to cope with”. Burden me! You’re not disallowed to have problems, with your health or otherwise, because I have a disability! In some cases you can wallow for a little while together, and then boost each other up. I know they do it because they care, but I’ve been dealing with this for years now, I can cope with others having a tough time and telling me about it ❤️ xxx
@@gamergrill4956 Exactly! Friendship is about supporting each other. But if you decide you don't want to burden us, it's rather infantilizing because we can decide for ourselves what we can do. Obviously it's well intentioned, not malicious! And it's always ok to ask if a certain subject is too heavy for us to talk about at that moment- it doesn't mean a moratorium on it forever. Basically, it's all about good communication and treating us like adults, which we really should strive for in every relationship!
The best response I’ve heard to that line of thinking is: “Misery is not a competition”
It will sound weird and maybe not good, but this video was like a punch in my face to wake me up. I suffer from depression and I see everyday in horrible colours, I put myself down, and even tho I know mental illness is not my fault and its far different from pchisical conditions, it has shown me that I am incredibly lucky to be healthy and that I have many opporutnities to use. But im wasting it because of my mental problems. Your videos make me appreciate it more and I couldnt be more greateful for that. Its so refreshing watching you being happy and full of energy even tho your life is for sure way harder than any other ordinery one.
Admirable in every aspect.. 💕
I also have autonomic nervous system disease and really think you did a great job describing it. Thank you for helping people understand ANSD.
I’m 37 and you’ve taught me a lot. I am crying. You are so lovely and hilarious. Thanks for just being you and sharing your story and wisdom with us. I’ve been telling my rheumatologist about how my legs and feet go numb if I’m sitting with my feet on the floor for years. I’ve sprained my ankle multiple times because I couldn’t feel my legs or feet at all and didn’t even realize I was standing with my ankle turned until the feeling (and pain) came back in them. I also pass out or fall right back down if something wakes me up and I stand up from a previously prone position. I was previously on a treatment that caused symptoms that mimic MS. I’ve had people ask me about if I had POTS many times but my doctors have not done anything else besides increasing my dosage of Gabapentin many times and put me on a medication for restless legs. Sometimes I feel like my doctors are just kinda waiting for me to die. I have been to soooooooooo many different doctors over the past decade but it’s always like they are interested in doing as much as possible to help my quality of life when I’m a new patient or serious new symptom starts and then they just go back to “Come back in 3 months for a follow up.” Do they not realize these 3 months keep adding up to years and decades of progressively getting worse and meh. I’m sick of writing about it. Anyway, thanks for your beautiful outlook on life and living with disabilities. You are sweet and refreshing.