Bedridden at 13 Years Old
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- Опубликовано: 29 июн 2024
- Claire shares her deeply personal journey of her battle with POTS (Postural Orthostatic Tachycardia Syndrome) along with the terrifying health scares she faced since the very young age of 10 years old with no understanding or answers.
Claire's Links:
IG: @canyoncreationsjewelry
Website: canyoncreationsjewelry.com
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Dev, thank you for having me on your podcast to share my story and help spread awareness ❤
You’re one bad ass bitch. I also have emetophobia and feeling nauseous is absolutely intolerable to me. I cannot fathom feeling nauseous every day of my life. You are so brave.
as a fellow POTsie who also deals with stomach issues and nutcracker thank you so much for your story 🩷 its nice to not feel so alone~
@@Amanda-kx9stthis made my day 🥹🥹 I’m so glad it helped. I’m always here for you!
i had very similar experiences and feelings. mine was non-Hodgkins's lymphoma. i believe it's so important to have psychological after care for sick children. i have diagnosed post-traumatic stress disorder today and have had many troubles to overcome in life due to childhood trauma. i've only now finally found a good doctor to start healing.
I'm super curious, do you have Ehlers Danlos syndrome as well? I have POTS and MCAS but also I have EDS. They call it the dark triad 🥹
I'm about an hour into the video so if you talk about this later in the video just ignore me haha
looking forward to listening! Dev, could you turn comments back on on the other episodes? I really enjoyed reading the comments on my episode, but aside from that, discussion is so important when it comes to such a wide variety of stories. Discussion can be to share helpful advice or to help prevent the spread of misinformation potentially shared by guests.
edit: Claire, thank you so much for telling your story! I have chronic stomach issues and can sympathize with many of the things you described. Sending you all the encouragement in the world to keep finding what works best for you
Thank you for hosting someone who has POTS and can bring more awareness to it. As someone who suffers from POTS, among other things, it is great to get more exposure and understanding.
I have an appointment for August to hopefully get a diagnosis, and I’ve been watching your videos lately, it means SO much to me that this is a topic of discussion on your channel. Thank you so much for giving so many people a platform. 💖
As someone who’s been dealing with debilitating health problems the past 3+ years, thank you for sharing these kinds of stories and experiences. It gives me hope that I’ll find the right answers and get treatment that helps me properly!
I have relapsing polychondritis and was blown off and misdiagnosed for 18 years with lupus. I was even given a permanent tracheostomy after a month long coma. I relate to so much of your story and your feelings what you went through with friends and family and the way people look at you. I understand ❤
I have pots. Glad it’s getting more talked about
Doctor in training here! Thank you for sharing your story and spreading awareness, you are helping other people suffering from this as well as healthcare workers understand this complex disease. I hope you are doing well, you are so strong❤
Chronic crypto infection s eg Lyme disease, chylimdma pneumonia you need to look up Dr Bob bransfield microbes and mental illness , Dr Richard Horowitz , Dr Shannon Delaney , this woman had tick Bourne illness you need ilads Dr for full tick Bourne illness work up , it's a cover up in medical system
It’s refreshing to hear in-depth discussion about the stomach issues caused by POTS. Since developing severe POTS I have experienced excruciating stomach pain that has brought me to tears. Investigations led nowhere but a simple “IBS” diagnosis, medical documents simply refer to my problems as “bloating” and I have been discharged from gastroenterology with no further care.
I have POTS and Lupus and the judgment I get because it’s invisible. Thanks for bringing awareness.
I’ve been waiting and hoping for a pots episode!! I knew it as soon as I saw the title. so nice to hear pots be more talked about! As someone who was healthy my whole life and developed pots overnight from covid in 2021!
What a brave girl! I’m sorry that lady at the airport was so awful to you! I hope you continue to heal. Thank you for sharing. I’m sure you helped a lot of people.❤
i have ankylosing spondylitis, and while our conditions may be completely unrelated, i resonated with so much of what she talked about in her experience with feeling invalidated and even gaslit about her pain. auto immune diseases and others alike, such as POTS, are “invisible” to others, and i think eventually with chronic illness we just learn to mask the pain as a coping mechanism and to try to live as close a life to others as possible. i think that people can’t fathom the amount of pain that we experience on a day to day basis, just because they can’t see a physical ailment. and i think if we really showed the amount of pain that we’re in externally, we’d get the constant questions of, are you okay, etc., and the reality is is that we’re not, but this is how it is.
It’s important for us to refer to the different parts of our bodies correctly, especially when we have an established diagnosis. Most people in general refer to their bowels and entire abdomen as their “stomach” or “tummy” because they’re uncomfortable or embarrassed to openly talk about their bowels. Bowels = Poop. It shows your doctors that you understand your anatomy and secondly, they’ll be able to get an accurate description of where your issue is.
The stomach (upper center-to-left quadrant of abdomen), bowels aka the “gut”(primarily below the bellybutton), and then our female bits in the low pelvis.
Agreed 100%!! My pain has always been all around my bellybutton pretty much occupying my entire mid-section, which made it hard to decipher between the 2!
OMG I HAVE POTS! Can’t wait to listen to the full podcast 😮 my mom also has chrons
This was extremely helpful. Thank you for sharing your story. My husband has Crohns and my daughter sometimes complains that her stomach hurts (she’s 3 1/2). Obviously, this doesn’t mean she has a similar condition but being aware is nice to know for the future. Thanks again! And I hope you’re doing better ❤
Thank you for listening! I am sorry to hear about Your husband's Crohns, but I am glad that you are aware for your daughter! Thank you so much.
This was so inspiring and so informative. Claire is absolutely amazing and brave. I know this will touch a lot of peoples hearts and make many people feel comforted if they are going through anything similar. Thank you so much for sharing your story Claire ❤️
This has been so soothing to listen to. Been a survivor of a brain tumor at age 9; chemo, surgerys, and radiation have these stupid long lasting effects, fatigue, motor functions to a degree, deficiencies, headaches, migraines, short term memory, spent 7 years trying to convince docters that i need growthe hormone meds, some misdiagnosing, gaslighting is very common, the depression, new cancers. I sympathize with having to deal with so much and for so long to finally get major parts of medical issues sorted so its been very cathartic to hear this story
I’m sorry that you relate to this on such a deeply personal level, no one should have to. ❤ I hope you are doing better now.
I’ve had IBS since high school. I went to so many doctors and was let down time after time then I started doing my own research. I also talked to people that have that illness. I changed my whole diet started exercising and now feel so much better!
I’m so happy you had her on I just got my diagnosis confirmed with a cardiologist this last Wednesday!
Ahh this is so crazy to see as a fellow POTsie. Looking forward to listening to this one!
Functional medicine doctors will follow you on the whole journey they look at the whole body not just one organ system
so so proud of claire !!
Claire your an amazing young lady you told us your story perfectly. I’m sure you made a lot of viewers aware of Potts that never even heard of it. I’m glad you’re doing better and I pray you will wake up pain free. Thank you again for sharing.👌❤️👍
Such a sweet comment, thank you so much! I appreciate you listening.
Any illness when u look fine is annoying I got bipolar anxiety and depression and who knows what else I’m funny I look fine I make friends I used to work thru my pain headaches and everything u gotta do it but not fun when ur ill all the time
*SO HAPPY TO SEE POTS REPRESENTATION!!*
Thank you for coming on *Claire* and opening up to use your story for advocacy! 🫶
thank you so much for this space Dev 🫶 you’re doing amazing work and we see your growth as an interviewer in every video girlie, KEEP ON!🖤
Thank you for sharing your story and informing us. I learned a lot today. 💚
That’s the goal! Thank you.❤
I was diagnosed with MS at 21, so on the dating thing I can understand , because I haven't had a girlfriend until after the progression of the chronic illnesses.
Yes! Saving this for my drive tomorrow morning! Lol ❤
I have pots!! Excited for this one!!
It sounds almost made up the way it manifests with such mystery. I hope your nausea and chronic pain becomes easier to deal with❤
My bestfriend has MALS and its such a debilitating syndrome, the corrective surgery she had didn’t work so we are still seeing if something else could fix it.
Amazing story, but also amazing marketing because I'm about to place an order for some rings lol
Yesss I got you!! Thank you so much! I specialize in custom jewelry as well so if you're looking for something specific, let me know!!
Watching this pregnant with dizziness , morning sickness , nausea yeah that made me take another pill so i can hear these symptoms without feeling them in my body 😂😂😂❤
I've been doing a lot of research about POTS and elder danlos syndrome EDS.... there's a documentary about a young girl with similar symptoms to what you describe called Bend or break I think... I'll double check and edit this comment. But Elder danlos society here on RUclips has lectures about the relation between the two. I'm seeing a genetic counselor Tuesday to talk about this and my psychiatrist asked me to come see them in person to test for POTS after telling him how much my symptoms bother me. I'm 30 and been having issues my whole life but because I look fine no one is really listening.
Yes that was the name of the documentary. "Issues with my tissues" was also a good one.
Thank you for sharing!! I’ll have to check out the documentaries!! so interesting how they’re both connected, I know my EDS symptoms were some of my first songs!
I have hEDS and have had similar symptoms as POTS since I was a kid. I can't remember the exact issue, it has a long medical name that I can't remember and it's been a while since I looked at my records. But any time I stood up, I'd get dizzy and see black or stars and have to fall back down and wait a while before trying again. Other people have told me that means that I fainted, but I don't ever remember losing consciousness...just being wobbly and not seeing clearly. I saw a cardiologist for a while to make sure there was nothing wrong with my heart, and he just told me to eat salt more often because of my low blood pressure. I'm in my 30's now and still have low BP, but the dizzy spells have gotten better (not entirely gone away though).
I’ve had heart surgery when I was young and my mom told me that too I had a hunch back for a long time
I’m 100% sure I have pots and with my pregnancy when I started to get big my legs swole sooo bad and I got preeclampsia at 32weeks and I’m wondering if pots had contributed to it
God this poor girl.
Never been soooooo early!!! 🎉
Gave up quit going to the er for my stomach pain still don’t know what it is lol had all the scans praying it’s my gallbladder and they remove it next week we will see lol
i have pots!! very cool video
I LOVE ZOFRANNN
I’ve had heart surgery when I was young and my mom told me that too I had a hunch back for a long time well I got a new slogan punch people in the throat for pots lol I hate that u get a migraine people say u look fine ooo that makes me so angry
Oh lol I’ve been trying for a baby hopefully I can get pregnant when I get healthy and either get diagnosed with something now or when I get pregnant
Have you looked into medical medium Anthony William? He’s had a lot of success stories with mystery illness. Focus is on food as medicine. He’s the celery juice guy.
I’m super curious- I’ll have to look into this! Thank you!
currently dealing with this ☹️ it’s so bad i can’t walk or stand for more than 5 minutes. i have no advocates
Dealing with sick people is not for the weak lol
Chronically ill does look a certain way
The guest’s posture is horrible!! Gosh
That happens when you aren’t getting enough blood flow to certain areas of the body or are in pain. Someone in pain constantly is hardly going to be sitting with the posture of the queen. Be more emphatic and cop on.
I love your pods, and the awareness of some of these peoples stories ❤❤