Hope your recovery is going well. Take the time you need to heal and recover. It is so difficult to have chronic pain. There is a big mental health challenge in dealing with serious medical conditions and treatment. Or sometimes, no available treatment. Please take care of yourself regarding that as well. So hard for people to understand. Hope you have a good support system and wishing you the best. I'll miss your videos, but you take are of yourself first.
As a psychologist that specializes in chronic illness and pain I strongly recommend people also seek a therapist who specializes in this field. The psychological burden of illness is not to be underestimated. I have listened to hundreds of clients explain their pain and symptoms and have helped many of them advocate to get testing done for rare conditions that DOZENS of MDs ignored. I truly hope that now that you know what you are dealing with you will get the care you deserved all along. BTW, research and treatment options for EDS in Germany are ahead of us here in the US so if you have not looked into that, please do!
I've never seen a listing for psychologist with a specialty in chronic illness/pain! Before I was derailed by my own chronic illness(es), that's what I wanted to do. Recently, I've been looking into potential jobs as a peer support specialist, but they seem to all center around addiction as a specialty. I live in a small, mostly rural community in Georgia. We have such a need for mental health professionals in this area--even a support group would be nice--but therapists are hard to come by--and certainly no one with a specialty like yours! I have fantasized of going back to school for a Masters in psych, counseling, social work, etc., but I'm still dealing with debt from my undergrad and (all-but-thesis) Masters in Sociology. Do you know of any resources out there to help with education costs for those in the mental health field? Are there any resources for those specializing in pain and mental health? Do positions exist such as peer support (or any other doctor/therapist adjacent roles) that work within a chronic illness/pain framework? Whoa...I'm sorry to bombard you with so many questions!! I'm just excited and encouraged that this specialty exists. My community has such a need in this area, and I have so many ideas on how I could help my community in this regard, other physicians that may be interested in partnering on something like this, and so on. I'm just lacking the bona fides. I have considered trying to just start a support group for folks in my area with chronic illnesses, pain management, and the like, but I don't know how or where to begin. Discouraged, I gave up on this idea before, but coming across your comment today has really ignited that spark all over again! I clearly have a lot more research to do as you can tell from my questions, but if you do know of resources or programs in other parts of the country that l could check out for inspiration, please let me know. As it's your area of expertise, I figured you might be more tuned into this sort of thing than a Google search! Please respond if you have the time. Thank you so much!❤
Anyone living with chronic pain knows that invisible disability is unbelievably difficult to deal with in the world that can’t see it so make no accommodation for it. It’s heroic to walk through the world with a smile as you do. I’m hoping you can get some relief.
I agree. It took 22 years for my diagnosis, and the impact of my health reaches far and wide to every singe corner of my life. My therapist said I have medical ptsd. I wish people understood 😢
Agreed! I saw a clinical health psychologist after years of thinking I was mentally okay even though my diagnoses were multiplying. Best thing I ever did. He subscribed to Cognitive Behavioral Therapy.
My neighbor with EDS got the neck fusion surgery several years ago. We crowdfunded and sent her to Italy for it. Her quality of life since then has been AMAZING!!!
Ay! I KNEW it. I’m the brain surgery girl! I’ve talked about this before but your channel was the whole reason I went to neuro in the first place back in 2018! Like, I almost died and tell everyone that thataylaa saved my life back then! How serendipitous that you have the same EDS diagnosis! So glad that you’re sharing this, I doubt this comment will even be seen, but you have more of an impact than you realize. Thanks again for saving my life, my EDS caused a chiari malformation and I found it just before it became fatal. Thank you thank you thank you Taylor. I know it’s been hard for you to share, you’re so brave!
I knew it too! Funny how you can just tell when someone else has EDS. I started a YT channel to share stories so we can all learn together. We need to spread awareness 🦓.
@@MeganSchrag Thank you for sharing this! Wow. I also have health issues like Taylor, and being vulnerable is hard. I can’t imagine what she goes through from people who are ignorant whether that’s on purpose or not. So for her to read that even one person’s life was changed, let alone saved, makes all that so much easier to manage. Bless you!! I hope you live your life big!
Having an “invisible illness” can be so mentally taxing. Simply having a diagnosis and a name can be life changing. Fingers crossed for less migraines!
How this girl did not hit a million YT subscriber is the biggest mystery of my life 😅 been here since the white fondation mixer aka a loooong time. Love you the most 🤍🤍
She doesn't have messy drama. Lots of immature viewers, and it's just not just children. They'd rather hate watch Jeffree Star and whatever influencer is the loudest and most immature, it appeals to them
I can’t even imagine how it felt to have a name to so much of what you experience and have even a small part of the answer to the why. Wishing you the best always Taylor
Dear [future, post-surgery, recovery-bound!] Taylor, Having watched your videos for many years, I’ve seen you humbly endure the pain life has handed you with grace and optimism. While I know none of us share the darkest moments on the internet, or maybe even just the shadowy ones, the outlook that you seem to have on life has shed light on some of my dark and shadowy days. Watching you pocket your diagnoses and march out into the world to explore it regardless of how difficult it may have been, to this day inspires me to not let my limitations hold me back from experiencing what life has to offer. May the universe continue to bless you and give you what your heart desires. ❤ You truly deserve it. Thank you for sharing a part of your life with us.
IF YOU HAVE BEEN HERE AND SUPPORTING TAYLOR SINCE LEOPARD ROBE??? SENDING YOU HUGS! I just remember you filming in I think it was your college dorm and still watching it’s been and will continue to be pleasure rest take alll the time you need. We still be here. Also who remembers 14 days of foundation 1!!!!!!??? growing with you will continue to be a pleasure don’t hurry back take all the time you need and you’ve always been drama free in beauty world that just amazing to me! You are very humbling. Yet you’ve done so many amazing things
I’ve been here!! Roommates with Rachel, her old bedroom/office, getting her actual office space out of the house, moving and moving again.. her face on the body wash, Morphe brush sets, all of it. The postmates guy turned boyfriend. 💗 I still wear my 50 Days of Foundation sweatshirt. Happy to find a similar OG!! ❤🥳🫶🏼
@@NYandAZright when she got her first morphe set and how real she was with 14 days of foundation…I’ve always admired that she has kept it real. I can’t imagine having this many migraine issues the way she talks about it and I just feel terrible for her. I hope they can find somethings that helps
GIRL. You have no idea how much this means to me. I have EDS too, most likely hypermobile type. As much as it sucks, you help me know (and have helped me know for like a decade) that I'm not alone in this. We will be here for you. Take as MUCH time as you need. ♥️
Another EDS-er here, didn't get diagnosed until my late 30s. You are not alone! And it is such a releif to know there's a diagnosis that can explain even the mundane stuff.
I so happy for you to be getting a proper diagnosis and am sending you positivity and prayers for this surgery will be a healing experience for you ❤🙏🏼❤️Much love to you❣️
I'm crying. What a roller coaster. My mom has EDS and had to get her lower spine fused after years of chronic pain that worsened after a severe car accident. We love you Taylor, and sending you so much support. See you when we see you ❤❤
Don't know if it helps you to hear from people who have had fusions and it worked. I have had a lower back fusion for 25 years now, my mother had one on her neck when she was 40 and she is now 86 and still lives in her own home. Sending bundles of good energy to you. You already know how to dig down deep, you got this.
I worked my entire career as a nurse, and even still, it took me over 20 years to get diagnosed with Axial Spondyloarthritis (autoimmune) and EDS...the variety and severity of my symptoms was vast and finally became debilitating enough that I had to retire at 49. I am now 51 and my treatment regimen still is changed frequently. My liver, gi system, neurological and cardiac systems have been effected from chronic high levels of widespread inflammation. I don't rember a time in my life that I did not have pain. I have finally begun to get a little energy back. Each day has to be a new promise to myself that I am going to keep moving, keep experiencing life to the absolute fullest capacity possible. I also have had years of severe migraine pain. Chronic pain is no joke and is not something some can "see". I'm sending you big hugs and wishing for a very speedy recovery. I hope this surgery will be your solution to decrease an maybe even eliminate your migraine and other pain.
@@lauren1218 EDS is a connective tissue disorder and it is also an autoimmune disease. Many people with one autoimmune disease will find they actually have other autoimmune diseases as well. That is because like the other body systems, the autoimmune system directly effects every other system in the body. It is that state of dis-ease or lack of homeostasis within the body over an extended period of time that causes inflammation throughout the body which then begins to break down aspects of those other body systems.... Like a slippery slope. Not all people with one autoimmune disease (like AS) experience this, but it is common. Like everything else in medicine, it would depend on your specific body and genetic makeup as to how your body will deal with AS and its symptoms and severity. I hope that helps
i was diagnosed with hEDS this year as well as MCAS and lupus sle. it’s such a relief when you find drs that validate and listen to you! i also had neck surgery and my c5 c6 disc removed and infusion. it’s been such a relief honestly.
This video broke me!😭 I have an auto immune disease/chronic illness & it can & has literally sucked the life right out of me at times- It's a continual grieving process. I have a hard time speaking about it bc 1. Not many people fully comprehend the amount of pain you go through daily. They may want to, but until you're "living with it," there is no comprehension. 2. Speaking it out loud just confirms to yourself that your body isn't normal. A body that is supposed to protect you is instead literally failing you. You compare your body to the body of others & it can bring you mentally down . 3. It's incredibly emotional. It is something non curable, just at times, tolerable. Medicine will always be something you rely on just to live. It's good for my soul to hear you so raw & honest about it. It truly makes you feel like you are not alone, when most days, you feel like you are. The only thing that pushes me through daily is my children. I don't know where I would be without them as my motivation to just keep going. Thank you again for being so relatable to us spoonies.❤️ I'm sending you all the love & prayers as you heal from this.
Brandi, like you, I've I've been suffering with chronic illness and autoimmune issues. I've been unable to work since 2015 and I'm on disability. Now I'm in my mid-40s, and I grieve every day for the life I lost....all the things I dreamed of becoming and was on my way to do just that....but my body just gave out. What a betrayal! It's been almost a decade and I still can't seem to move past it. What do I do now? What's my next chapter....will I even have a next chapter or is this just it? Your comment about the continual grieving process really resonated and moved me... because that's me too. And it's something that I don't hear discussed. Ever. It is so reassuring to know that I'm not alone. I appreciate your bravery in sharing your experience and the frustration and sadness that comes with it. I've often thought about sharing that kind of thing in comment sections when chronic illness related topics come up, but I chicken out. After so long of being misunderstood from friends and family, health professionals who dismiss you, and so on, it is easy to get into the mindset that no one cares. You inspired me to open up--thank you. There is something cathartic about putting this out in the universe. Will anyone read it? Maybe it doesn't matter and the release *is* the important part. But while I'm feeling brave--and this may be kinda weird or forward--but if you'd ever like someone to talk to or commiserate with...I'm here. I can share contact info if you're interested. Chronic illness--especially when it is "invisible" can be such a lonely path. At any rate, know that you are not alone out there, my fellow Spoonie. I see you. ❤
I also have EDS!!! Welcome to the Zebra community! We are very low on spoons and our joints go out more than we do. I hope your journey from here gets better. Your pain is valid though. Don’t let any doctor, friend, family member, or stranger invalidate you. Your zebra family will always support you. ❤
I have EDS hypermobile type. I started a YT channel to share stories so we can all learn together. We need to spread awareness 🦓. I love sharing stories.
As a fellow “invisible” struggler, you have been such a beacon and force. What a relief to have an answer and at least one next step. We will be here when you return, I am hoping a smooth and calming recovery.
fellow EDS zebra here- sending you so much love and encouragement. i’m so sorry you’ve have to deal with so much pain and that it’s been so unbelievably debilitating, truly sounds like you’ve been through the depths of hell. thank you for sharing your story 🩷
I have EDS hypermobile type. I started a YT channel to share stories so we can all learn together. We need to spread awareness 🦓 I love sharing stories.
I feel so very seen in this. After years of searching for answers through multiple doctors, specialists, tests I finally got diagnosed with hyper mobile Ehlers Danlos Syndrome in March of this year. My ribs and spine hips, all of my joints shift and struggle to stay in place. I have severe chronic migraines all the time and I’ve always watched your content as you gave me so much strength. Now that you’ve been going through the same things, I feel even more deeply connected to you. I can’t tell you how many times I have had to sit and argue with a doctor that something is wrong. I don’t know what But please test me for something else. so many doctors and specialist said that I’m just crazy or that I am seeking attention. Come to find out after my EDS diagnosis, but I’m not crazy. My pain suffering all my weird issues all make perfect Clinical sense. I feel at 30 years old. I am just now trying to figure out how to help my body. Thank you for sharing so much of your life with us.
I didn’t get diagnosed with my EDS until January 2020 @ the Mayo Clinic by a Geneticist. Only 30 years after I started experiencing symptoms! I felt medically gaslit for the majority of my life! It sucks but I’m so thankful to finally have answers now!
I feel like I just read message I wrote myself - much the same experiences here. Am in my mid 30s with multiple failed spinal fusions and on diagnosed with EDS about 6 months ago. All of a sudden, the years and years of issues just made sense.
I actually think influencers and other well-known individuals with EDS have done a huge part of bringing the disease to the front of human awareness! It may not actually be as rare as people believe. That's my guess. Good luck to you!!!
I have it too! So glad to see more of us here. I even have a very small YT channel that I just started about it. Hoping to learn more together by sharing my experiences. I even have a video basically on this same thing. 🦓
I’ve been watching your videos on and off since before your accutane journey and I hope you’ve finally found something that will give you some well-deserved respite.
Hear me when I say, take ALL the time you need to recover! I've watched you for years and I so hope this brings you some relief. You work so hard and it's time to take care of you! Praying for you! ❤
I know this isn't your favorite subject to talk about but thank you for speaking up. It gives a lot of us chronic illness sufferers hope. Wishing you a speedy recovery 🙏
As a Neurology nurse and following you for years taking your time to heal is super important. I wish you the best and see you when you return. Heal well.
This brought me to tears. I’m so happy you never stopped advocating for yourself. I hope recovery goes as smoothly as possible and we’ll be here when you come back. ❤
My heart is broken into a million pieces for the pain you've endured for so many years. I'm praying steadfastly that this surgery will put you on the path to a full recovery for a full life. Love you!
@@PaulyDays-dg4nfwrong. As someone who was diagnosed with EDS 13 years ago, and have been living with debilitating symptoms for over a decade, this isn’t a healthy way to speak to a person with chronic illness. We don’t get healthy. Saying this to us is not only insulting but also hurtful because it’s something we are very aware we will never be. The language that you use with a person who has chronic illness is very important. Saying that you hope we have a good pain day, or that our surgery goes well, are great. There is no cure, EDS is genetic. It’s something we were born with. Asking if we have tried anything new lately that has helped. Or just to check in to see how we are feeling mentally is so kind, because your mental health is also drained from the pain. Over time it will actually require how the synapse fire in your brain. Its overwhelming. Please don’t ever just say to us about getting healthy.
Taylor, fellow EDS patient (with Chiari) here. Three of the best EDS knowledgeable doctors on the East Coast have refused to do surgery to fix a similar complication on me. I would be very interested to know who you ended up going to. I’ve emotionally tapped out from traveling, missing work, just to hit a brick wall. Manifesting healing, decrease in pain, and increase in functionality for you. 💜
As someone with an "invisible" chronic pain disorder (trigeminal neuralgia) thank you for sharing your story. Dealing with chronic pain on a daily basis can be so debilitating but like you, I don't let it define me. Being grateful for the little moments does so much to help keep me going. Take all the time you need to recover, we'll be here when you get back.
I watched my MIL suffer from this and it was heartbreaking. Meds stopped working for her, she couldn’t eat, brush her teeth, comb her hair or do anything related to the face without spasming in pain. After a lot of research we found an Endo Neurovascular surgeon in India who performed MVD surgery and she lived pain free for the rest of her life. I wish you the very best
Finished the video and wow Taylor, tears in my eyes as I type. Compared to you, I have had a miniscule fraction of dibilatating pain in my back, tried years of chiropractic care, decompression therapy, muscle relaxers, pain meds, dry needling, etc and I verbally said, "I can't live like this". Luckily, I was finally able to find some relief with PT. I say all of that to say, you are incredible! You have been dealing with chronic/debilitating pain for years and years and you still manage to put on a smile and make videos for your YT family. I remember you mentioning the huge disconnect between what we see on your videos compared to your daily life/struggles with migraines and such and how much of a mind F that was for you. This video really gave us a glimpse of what you go through. Please know we absolutely love you and will be waiting for your return, no matter how long that is. You don't need a stranger to tell you this, but please, please take more than enough time off. Your health is literally the only thing that matters! ❤️
I'm praying that your recovery is filled with peace and healing. I'm recovering from decompression surgery to treat my Chiari 1 Malformation. The last few years I've had neck pain slowly getting worse and so bad all I could do was lay in bed all day and cry. I finally went to a doctor who immediately sent me for a neck MRI where they found my Chiari 1 Malformation which was causing a build up fluid in my spine. Thankfully there was neurosurgeon in the next town over who had a special interest in treating Chiari. I had the decompression surgery about 4 weeks ago (long story short, they shaved down a bone in my skull to make room for my brain and to restore the proper flow of brain fluid). I'm healing well and back at work. It's hard to tell if the surgery "fixed" my neck pain since I'm still healing from the surgery and the incision on my neck, but I'm hopeful. I can't believe how I spent the last five years gaslighting myself about the pain like telling myself, "I'm just being over sensitive about the pain, it's not that bad, I'm just sleeping funky, blah blah blah." Instead of seeing a doctor.
Watching this video I’m reminded of what a strong, resilient woman you are. I wish you the best of luck in your continuing health journey! My thoughts and prayers are with you.
I'm amazed how much you've been able to accomplish despite living with chronic pain. I'll admit that this video brought me to tears. You are such a strong and positive person! Hope you have a smooth recovery. All your viewers will miss you dearly, but put yourself first before anyone else. Your health is a priority and we all support you! Sending lots of love and a big hug your way ❤ 🫂
Fellow Zebra here. I had disc replacement and atheroplasty between c5-c6 and c6-c7 a few months ago. I understand the struggle and I fully know how strong you are being for just surviving. I'm praying for you and a wonderful, easy recovery. You are a badass, I hope you find relief.
Taylor, I GET IT. People who don't have chronic pain have no clue how debilitating it can be, but also how much pain we are pushing through without anyone knowing. I call myself a "professional faker" because I can push through so much pain and fatigue that no one would suspect a thing. It's unfortunate that I've had to do that, but it's the only way that I can live. I'm on the same page as you! That's why you're my favorite RUclipsr and have been for 8-10 years (I've lost track of how long it's been) because you GET IT. Thank you for sharing about this. I know how hard it is to talk about. I am praying for you and hoping that this recovery will be different, in the best way possible. Sending a virtual hug your way!💕
Side note, I'm so happy you have an answer! I finally got diagnosed very recently and it feels good to know exactly what I'm facing. Such a relief in many aspects!
I think I speak for all of us when I say I’m so proud of you for taking this time to heal. You will not regret taking a few months off for your health and you will not lose those of us who have been your ride-or-dies. We’ll be sending you well wishes while you’re gone and celebrate with you when you’re back! Take care, Taylor ❤
Wishing you a smooth recovery and good for you for advocating for yourself and seeing so many doctors to get answers tou need. Rest take care of yourself and recover.
Fellow zebra here. I’ve been following your journey for years. I also had a neck injury as a teenager. Both of my children have EDS. I hate that you have this!!! Thank you for speaking about this. It only can help bring awareness to us. Sending gentle hugs and quick healing prayers to you 🫶🏼🦓💜
I have EDS hypermobile type. I started a YT channel to share stories so we can all learn together. We need to spread awareness 🦓. I love sharing stories.
Taylor, I've probably watched you for 10 years at this point. When you had your last neck surgery and described what you were going through, I had just gotten diagnosed with EDS. It crossed my mind back then that maybe you were a fellow zebra. I hope this surgery does everything it is supposed to and gets you real relief. Sending you love ❤️
It's funny how we can sense when someone else has EDS about her. I have EDS hypermobile type. I started a YT channel to share stories so we can all learn together. We need to spread awareness 🦓. I love sharing stories.
I’ve been chronically ill since 2008 and had to explain my health problems over and over, it’s exhausting but finally having a name to all the issues is so reaffirming. Finally getting an EDS diagnosis was life altering for me and everything started making sense, it’s like getting a sense of relief but also grieving all that time that you went undiagnosed and suffered. Sending you lots of love and healing, take extra care of yourself and come back only when you’re absolutely ready! ❤
Totally agree. Everything finally made sense and I was actually happy. I have EDS hypermobile type. I started a YT channel to share stories so we can all learn together. We need to spread awareness 🦓. I love sharing stories.
This is nothing like chronic pain or migraines but I’ve struggled with chronic fatigue my entire adult life and what you said about not being able to do things other people can is so real. It’s hard to not compare yourself to others. Your strength is very inspring❤
My sweet, sweet chronic pain sister!! I am watching this in a hospital infusion room while I get my umpteenth round of solumedrol (steroids-for my MS that is in a flare up). I feel so much for your situation! You are a warrior! Keep fighting!! 🖤🖤🖤
Oh my gosh Taylor, I almost started crying during this video. You are an absolute powerhouse to keep a career going for yourself through all of this! The art you create through all of this is absolutely amazing! Your videos are such a joy to watch for productive and creative inspiration!
You being able to just get out of bed truly amazes me and is one of the many reasons you’ve been such an inspiration for me. If you hadn’t pushed thru your entire life and fought to live, you likely wouldn’t be here today. Of course you’ll be missed but you take all of the time you need for yourself to heal. This seems to have happened at the perfect time having found “your person” to be by your side as you heal along with mom & dad. You deserve sooo many days where you feel amazing. You’re in my prayers for sure! Sending love and hugs your way❤️🙏❤️ (subscriber for 7 @ 7 years 😉)
I’ve had an autoimmune disease for 34 years, that took 22 years to diagnose. I spent years disabled and could only move my arms, and migraines also. The abuse I’ve been through in the medical system could be a movie. I’ve had the kind of pain that you think you might actually die, which I know you get that, but no doctors believed me and had no help. Doctors are very comfortable with the discomfort of women. I know several people with EDS. It’s such a complicated disease. From all the years I’ve known you and from what you’ve shared of your journey, just know you have what it takes to do this. You already have been. It’s a label and information. I understand. I understand so much. Ugh you got me crying there at the end. I can feel you get it and it makes my insides lurch. When you meet someone who has walked a similar path it’s so powerful, healing, and validating. I’m so sorry for what you’ve been through. Praying for you through this surgery and recovery. What you said about living life to the fullest, thank you, I needed to hear that today as I tend to isolate when it’s real hard and just think it’s not worth it. As you recover, and the low days creep in, remember your reasons why. For me, its being an auntie. Hold on to that. ❤🇨🇦
I have EDS hypermobile type. I started a YT channel to share stories so we can all learn together. We need to spread awareness 🦓. I love sharing stories.
@@DrReedB0928 I have a massage therapist with EDS as well as a friend. I’ve heard some stories, really tough ones. My friend is recovering from surgery, and like Taylor she is taking much much longer to heal. I’d be happy to share your channel with them. Thank you 🙏
My sister has EDS and POTS. Watching you deal with yours has helped me understand what she may be going though and talk to her about it. I hope you know you've made a positive impact! Good luck on your surgery ❤
I have EDS hypermobile type. I started a YT channel to share stories so we can all learn together. We need to spread awareness 🦓. I love sharing stories--definitely share with your sister.
made me tear up too LOL. As a fellow autoimmune girly, it can indeed feel lonely; I appreciated your hug and encouraging words. Youre amazing and I'm sure I speak for all of us who support you that we'll be here WHENEVER you come back! Wishing you a safe recovery.
I hope your recovery is surrounded by love, your favorite comfort shows, rest, scented candles, bomb teas, and peace. Wishing for the speediest recovery period for you 🙏🏼
Praying everything has gone well with surgery! I had disc removal and fusion of C5-7 2 years ago at 43 and I was on the younger end of people they recommend it for, but it has been amazing. I've gotten my life back. I was walking with a cane full time because my balance was so f'd up and i had constant migraines. I was terrified of spinal surgery and having a titanium plate in my neck, but it has made a world of difference for me. Migraines are down to 2-3/month, pain is almost toally gone, and all the numbness is gone. I hope this gives you your life back like it did for me.
I have never clicked so fast after seeing the notification. I struggle with very serious health issues like yours, where daily quality of life is severely affected. It is such a journey to find the right doctors to get a correct diagnosis and treatment. As I watch your videos, I am always encouraged that you are still pushing through your issues and have not given up on RUclips. You are an amazing woman, and I am sending so much hope and prayers for this next stage of your health journey. I appreciate you! 🥰🖤🖤🖤
Taylor, I had surgery on my spine in 2015. My disorder is so rare, there was only one surgeon in the US who knew how to perform the surgery I needed. My husband and I spent a month there and the recovery took almost a year. I fought so hard to find answers, and I'm so glad you have yours. I still live in chronic pain, but it is more manageable. I will be watching your old videos daily to keep your numbers up. I hope EVERYONE will do this too!!
Was thinking about you today so I wanted to leave you a message. I hope your recovery is going well. We miss you, but of course your health is the priority!
As a fellow migraine sufferer, this makes so much sense. So glad you are starting to get your answers. EDS and POTS (dysautonomia), Endo, autoimmune issues, and neurodiversity are somehow connected, but researchers are just starting to look into this from what I've read. So many in the chronic pain community I follow are starting to get these string of diagnoses... I hope with giving things a name, we can advocate further for ourselves and get the treatment and relief everyone deserves. Will keep you in my thoughts, and will be here whenever you return! EDIT: Just finished the videos and the end got me in tears too... sending so much love, seriously everyone here cares so much and will be here for you always
Taylor, from all that you have shared, you have championed a life worth living. We are all so proud of the courage you display, and the vulnerability. Your parents are so fortunate to have raised a well centered and inspiring person. We love you and pray for the best outcomes for you. We’ll be here cheering when you come back to us!❤
As a fellow chronic migraine sufferer, mine also seem to be from my neck and I have EDS as well. I’m just struggling to find a specialist in my state for it but was diagnosed by my rheumatologist. We will be watching and waiting for your next video! You gave me more confidence when I was younger with trying to find foundations as a pale person!
Taylor, you are a warrior. I've had migraines since I was a little girl. They are so debilitating that sometimes, even death feels like a better option. I can't even imagine having 20+ a month. I'm praying for your recovery and healing. Big hugs and get all of the rest you need.
I can't imagine having surgery with EDS. I've had 5 neck surgeries, plus many other surgeries, and regular recovery is bad enough. Hope you get better quickly.
Totally agree. Healing is so different with EDS. I have EDS hypermobile type. I started a YT channel to share stories so we can all learn together. We need to spread awareness 🦓. I love sharing stories.
I hope everything went well! You are such an inspiration to those with chronic pain. I am so grateful for you sharing and respecting yourself and your body while you heal. ❤ please take all the time you need. We will be here when you are ready.
I'm sending you my love and prayers for the surgery and recovery to go smoothly and easily!! You got this, thank you for being here reminding me I'm not alone ❤
As someone with chronic migraine, you have always been an inspiration, and I'm very happy that you are getting tangible help! Whenever you are well again and decide to come back we'll be here to support your work! And thank you for sharing
Omg I’m crossing my fingers your finally get some relief with this surgery!! I’ve been watching you for almost 6 years and have seen you go into things so hopeful, only to be let down so badly, and it was so heartbreaking to watch. I don’t think I’d be able to be so strong if I was in your shoes..man, I just hope you can finally live without being in so much pain. I’m going to miss seeing your videos, but your body and health are the top priority, always. Just know that I’m going to be thinking of you and wishing you the absolute best while you’re gone, and we’re ALL rooting for you, girl. I wish I could give you the biggest hug. Take care of yourself, ok? We love you! ❤❤❤
Wishing you a speedy recovery! I hope you get some relief and have the time you need to fully recover mentally and physically. We will all be here when you get back ❤❤
Taylor! 🥹❤️ my heart goes out to you and praying for a quick recovery. You are so calm and collected in this video while talking about an insanely complicated surgery. You are a warrior and we are all sending you virtual hugs and support. Please take as much time off without thinking of needing to upload for us. As much as we will miss your videos for this period of time we want nothing more than to see a happy and healthy, pain free Taylor. You’re amazing stay strong girl!
The ending made me tear up ❤🥹 Thank you for being so open and honest with us. My normal is pacemaker replacements every 7-10 years, so when you said neck surgery will become the norm for you I was like man I know that too well. Sending you all the positive vibes, prayers, and hugs! Rest up and don’t push yourself too hard, take your time to heal.
Wishing you healing and recovery. I’ll be rewatching your older videos to get some algo action going while you recover with family and loved ones. We wish you the absolute best, Taylor. Take care of you. You are an inspiration to us all. Thank you for sharing your story with us. 💗
Sending you SO MANY hugs Taylor. I'm happy to hear that after all the doctor visits, researching, and, honestly, constant aggravation, you've received some solid answers. Please know we're all thinking of you and wishing you a speedy recovery. Please, please, don't feel like you have to rush back. If your recovery takes more than a few months or even a year, concentrate on that. We'll be here waiting. ❤
I hate how much we women have to advocate for proper tests and doctors to take concerns seriously. I am also shocked and horrified that you had to explain to doctors what EDS was. I grew up with people around me in healthcare so I had heard about it many years ago. Girl sending you so many prayers and wishes for recovery!!!❤❤❤
As a fellow chronic illness warrior, I really hope this surgery and your new doctor(s) help you make progress towards normal functioning. Please take all the time you need. Your physical and mental health are invaluable and should be cherished.
So so so very glad you are finally putting yourself first and not trying to work instead of recovering. Wish you the best recovery sending love and good wishes xxxx
There are too many words I want to say but the first set is a HUGE thank you for opening up about your symptoms, diagnosis, and the experiences you’ve struggled with and powered through. You are saving so many people’s lives due to your openness. I pray for you and a healthy recovery. I tell all my patients that feel apprehensive or concerned about their health exactly what you stated, to advocate for themselves. I do my best as their nurse by communicating and documenting their comments/questions, objective findings, and my observations to their treatment team. PSA, please speak up for yourself so that you get what you need and the doctors can record your details, even if you think it could be “no big deal.” Maybe I’m just an over-worried nurse, but if your condition has been chronic and you haven’t received proper relief or do not remember what it feels like to feel like the real you, that’s a really big deal, and I will do what I can to ensure the doctors hear you too. Wishing you all great health and happiness. ❤😊
As a person who lives with chronic daily migraines since the age of 9 and a full time job, I get it. I appreciate your transparency rather than saying you are ill, click bate and then say it's personal. I also travel quite a lot globally because I'm very used to severe pain. Last winter I found myself in a hospital in Finland due to a migraine that I couldn't break on my own. It made me appreciate our healthcare in America. I've also been in the ER in Italy and denied boarding due to what happens when I get a migraine. I know a lot of people who get occasional migraines but having chronic daily migraines is a whole other life. Be well.
Taylor, I've been watching you for years now and it is so fantastic to see you get some kind of answers and, I can only hope, some relief. Thank you for sharing so much of your journey with us as well as so much of your life. Sending you good thoughts during your recovery!
Taylor, just want to echo all these comments and send you love and healing. And if it hasn’t been said lately, I hope you know that who you are matters to the world. The things you share, the things you keep private, the encouragement and fearlessness. It makes a difference. The community you’ve built here matters. Rest and recover 🤍
I haven't been able to keep up with your videos a ton lately, but I see that zebra there, and I think I know what that means... :) Welcome to the club none of us want to be in! I've wondered for quite a while whether you had EDS. I was diagnosed in January. ❤️
Sending you so much strength and love for your recovery. You have so much support here, and we will continue to wish you well until you feel well enough to work again! Take your time, and know how strong you are.
I have a loved one who struggles with EDS and it is an incredibly difficult condition to live with. I think you're inspiring and I hope wish you rest and healing with your loved ones. I hope you find relief after this surgery and I'll miss your videos. ❤
Taylor, as a chronic pain warrior I know how much this affects your every day functions. I have surgery in November to help correct my pain and I cry daily thinking about a life without chronic pain. I don’t fully understand how people go day to day feeling … “normal”. I hope so much for relief for you and know that we ALL support you and want nothing but the best for you, in whatever form that can be achieved. So proud of you for doing the damn thing !👏🏼
All my best, most positive vibes, thoughts, and prayers. I hope the surgery is successful and recovery is as smooth and fast as possible. You probably hear this all the time, and may even be tired of hearing it, but you are so strong and brave. I admire your positive outlook despite such a enormous challenges!
Hang in there, Taylor. We're all keeping you in our thoughts and prayers 🙏🙏. We'll miss you, but we know you'll return stronger and healthier than ever. Take care of yourself, and we wish you a speedy recovery! God bless you and your family!❤🧡💛💚💙💜❤🩹
@@taylorwynn I started watching you 9 yrs go while on bed rest with my son . I am a good 15 ish yrs oldest than you so I know it sounds mom like to say it’s been such a joy watching you grow and change lol. It’s corny but true. I relate very closely to your health struggles and watching you navigate life is inspiring. From my heart. I know the lows that come with being physically limited and it hurts my heart for you. Sending all my love, peace and healing vibes🥰
I've also had kidney stones and migraines and I gotta say they are worse too! Because at least with kidney stones you get waves of pain whereas migraines it's just like PAINPAINPAIN continually pounding into your skull like a sledgehammer.
Flyyyyyyying to RUclips! A Taylor vid and baby asleep, hell yeah! Even if the topic is not so fun. We are here for you and we will be! We support every desicion you make! Love from Germany 🖤🖤🖤
I was finally, FINALLY diagnosed with SLE - systemic lupus - after trying to explain to doctors for YEARS that my joints are painful and things just HURT.. the way I cried when I got the diagnosis, not from sadness but from relief bc there WAS AN ANSWER. It wasn’t in my mind. I remember as a CHILD my dad took me to get full body scans done and one doctor literally said to my dad “she may just want ‘a-t-t-e-n-t-i-o-n’” and SPELLED THE WORD (which I knew how to spell). It crushed me for like a solid decade. Take care of yourself friend and do whatever it is that can help you feel ok.
Fellow Zebra here!! Followed for years, since you had silver hair. I relate so hard to the teaching doctors about EDS and convincing them to run tests. For me it manifests with more leg/arm/finger dislocations than migraines. I actually discovered EDS through another RUclipsr called Jessica Kellgren Fozard. I watched her videos and was like, wait that isn’t how everyone lives? I hope everything goes well with the surgery 💕
Oh my gosh! What a journey for you. I sincerely wish you the best in your recovery and hope the surgery went well. You should really be proud of yourself for all you've been able to do while dealing with this kind of chronic pain. You've got a great mindset and spirit.
Oh my gosh, I love you girl!! Praying that the surgery and recovery goes well - we’ll be here for you whenever you get back!!!!!!
Love my two faves supporting each other 🫶🏼
Amen!
Yes to this!🙌
Same! Saying a prayer now. And we’ll miss you and we hope you take the time away that you need. No rush on my part! ❤
Hope your recovery is going well. Take the time you need to heal and recover. It is so difficult to have chronic pain. There is a big mental health challenge in dealing with serious medical conditions and treatment.
Or sometimes, no available treatment. Please take care of yourself regarding that as well. So hard for people to understand. Hope you have a good support system and wishing you the best. I'll miss your videos, but you take are of yourself first.
As a psychologist that specializes in chronic illness and pain I strongly recommend people also seek a therapist who specializes in this field. The psychological burden of illness is not to be underestimated. I have listened to hundreds of clients explain their pain and symptoms and have helped many of them advocate to get testing done for rare conditions that DOZENS of MDs ignored. I truly hope that now that you know what you are dealing with you will get the care you deserved all along. BTW, research and treatment options for EDS in Germany are ahead of us here in the US so if you have not looked into that, please do!
I've never seen a listing for psychologist with a specialty in chronic illness/pain! Before I was derailed by my own chronic illness(es), that's what I wanted to do. Recently, I've been looking into potential jobs as a peer support specialist, but they seem to all center around addiction as a specialty. I live in a small, mostly rural community in Georgia. We have such a need for mental health professionals in this area--even a support group would be nice--but therapists are hard to come by--and certainly no one with a specialty like yours!
I have fantasized of going back to school for a Masters in psych, counseling, social work, etc., but I'm still dealing with debt from my undergrad and (all-but-thesis) Masters in Sociology. Do you know of any resources out there to help with education costs for those in the mental health field? Are there any resources for those specializing in pain and mental health? Do positions exist such as peer support (or any other doctor/therapist adjacent roles) that work within a chronic illness/pain framework?
Whoa...I'm sorry to bombard you with so many questions!! I'm just excited and encouraged that this specialty exists. My community has such a need in this area, and I have so many ideas on how I could help my community in this regard, other physicians that may be interested in partnering on something like this, and so on. I'm just lacking the bona fides. I have considered trying to just start a support group for folks in my area with chronic illnesses, pain management, and the like, but I don't know how or where to begin. Discouraged, I gave up on this idea before, but coming across your comment today has really ignited that spark all over again! I clearly have a lot more research to do as you can tell from my questions, but if you do know of resources or programs in other parts of the country that l could check out for inspiration, please let me know. As it's your area of expertise, I figured you might be more tuned into this sort of thing than a Google search! Please respond if you have the time. Thank you so much!❤
Anyone living with chronic pain knows that invisible disability is unbelievably difficult to deal with in the world that can’t see it so make no accommodation for it. It’s heroic to walk through the world with a smile as you do. I’m hoping you can get some relief.
I fully agree. I had to take therapy because anxiety and depression from chronic pain went out of the roof
I agree. It took 22 years for my diagnosis, and the impact of my health reaches far and wide to every singe corner of my life. My therapist said I have medical ptsd. I wish people understood 😢
Agreed! I saw a clinical health psychologist after years of thinking I was mentally okay even though my diagnoses were multiplying. Best thing I ever did. He subscribed to Cognitive Behavioral Therapy.
My neighbor with EDS got the neck fusion surgery several years ago. We crowdfunded and sent her to Italy for it. Her quality of life since then has been AMAZING!!!
That’s amazing! ❤😊
Wow ❤❤❤❤
Amazing people y'all are.
Ay! I KNEW it. I’m the brain surgery girl! I’ve talked about this before but your channel was the whole reason I went to neuro in the first place back in 2018! Like, I almost died and tell everyone that thataylaa saved my life back then! How serendipitous that you have the same EDS diagnosis! So glad that you’re sharing this, I doubt this comment will even be seen, but you have more of an impact than you realize.
Thanks again for saving my life, my EDS caused a chiari malformation and I found it just before it became fatal. Thank you thank you thank you Taylor. I know it’s been hard for you to share, you’re so brave!
I knew it too! Funny how you can just tell when someone else has EDS. I started a YT channel to share stories so we can all learn together. We need to spread awareness 🦓.
I don't have EDS, but l had Chiari surgery in 2001. It saved my life.
@@MeganSchrag Thank you for sharing this! Wow. I also have health issues like Taylor, and being vulnerable is hard. I can’t imagine what she goes through from people who are ignorant whether that’s on purpose or not. So for her to read that even one person’s life was changed, let alone saved, makes all that so much easier to manage. Bless you!! I hope you live your life big!
Thoughts are with you. Best of luck to you. Take care of you!
My husband had his chiari surgery in 2021. It has helped him so much, but was such a stressful time. We’re both so glad he did have it
Having an “invisible illness” can be so mentally taxing. Simply having a diagnosis and a name can be life changing. Fingers crossed for less migraines!
How this girl did not hit a million YT subscriber is the biggest mystery of my life 😅 been here since the white fondation mixer aka a loooong time. Love you the most 🤍🤍
I remember those days.
Oh, jeez. Yes. The fair skin foundation videos. I forgot about those.
She doesn't have messy drama. Lots of immature viewers, and it's just not just children. They'd rather hate watch Jeffree Star and whatever influencer is the loudest and most immature, it appeals to them
I can’t even imagine how it felt to have a name to so much of what you experience and have even a small part of the answer to the why. Wishing you the best always Taylor
Dear [future, post-surgery, recovery-bound!] Taylor,
Having watched your videos for many years, I’ve seen you humbly endure the pain life has handed you with grace and optimism. While I know none of us share the darkest moments on the internet, or maybe even just the shadowy ones, the outlook that you seem to have on life has shed light on some of my dark and shadowy days. Watching you pocket your diagnoses and march out into the world to explore it regardless of how difficult it may have been, to this day inspires me to not let my limitations hold me back from experiencing what life has to offer. May the universe continue to bless you and give you what your heart desires. ❤ You truly deserve it. Thank you for sharing a part of your life with us.
IF YOU HAVE BEEN HERE AND SUPPORTING TAYLOR SINCE LEOPARD ROBE??? SENDING YOU HUGS! I just remember you filming in I think it was your college dorm and still watching it’s been and will continue to be pleasure rest take alll the time you need. We still be here. Also who remembers 14 days of foundation 1!!!!!!??? growing with you will continue to be a pleasure don’t hurry back take all the time you need and you’ve always been drama free in beauty world that just amazing to me! You are very humbling. Yet you’ve done so many amazing things
I’ve been here!! Roommates with Rachel, her old bedroom/office, getting her actual office space out of the house, moving and moving again.. her face on the body wash, Morphe brush sets, all of it. The postmates guy turned boyfriend. 💗
I still wear my 50 Days of Foundation sweatshirt. Happy to find a similar OG!! ❤🥳🫶🏼
@@NYandAZright when she got her first morphe set and how real she was with 14 days of foundation…I’ve always admired that she has kept it real. I can’t imagine having this many migraine issues the way she talks about it and I just feel terrible for her. I hope they can find somethings that helps
GIRL. You have no idea how much this means to me. I have EDS too, most likely hypermobile type. As much as it sucks, you help me know (and have helped me know for like a decade) that I'm not alone in this. We will be here for you. Take as MUCH time as you need. ♥️
Another EDS-er here, didn't get diagnosed until my late 30s. You are not alone! And it is such a releif to know there's a diagnosis that can explain even the mundane stuff.
I’m 38 and was just finally diagnosed with EDS last year. It is so helpful to know we aren’t alone in our struggles.
I so happy for you to be getting a proper diagnosis and am sending you positivity and prayers for this surgery will be a healing experience for you ❤🙏🏼❤️Much love to you❣️
Love seeing all the zebras in the comments
Love to see the EDS support! 💕 The migraines are a lot to deal with and one of the most frustrating symptoms. Much love!
I'm crying. What a roller coaster. My mom has EDS and had to get her lower spine fused after years of chronic pain that worsened after a severe car accident. We love you Taylor, and sending you so much support. See you when we see you ❤❤
Did the surgery help her?
Did the surgery help your mother?
@@paulachristie7807 it helped very much!
@@paulachristie7807 yes they did!
I’m a first year medical student and we learned about EDS week 2 of class. I hope this gives you and others hope for the future
Don't know if it helps you to hear from people who have had fusions and it worked. I have had a lower back fusion for 25 years now, my mother had one on her neck when she was 40 and she is now 86 and still lives in her own home. Sending bundles of good energy to you. You already know how to dig down deep, you got this.
I worked my entire career as a nurse, and even still, it took me over 20 years to get diagnosed with Axial Spondyloarthritis (autoimmune) and EDS...the variety and severity of my symptoms was vast and finally became debilitating enough that I had to retire at 49. I am now 51 and my treatment regimen still is changed frequently. My liver, gi system, neurological and cardiac systems have been effected from chronic high levels of widespread inflammation. I don't rember a time in my life that I did not have pain. I have finally begun to get a little energy back. Each day has to be a new promise to myself that I am going to keep moving, keep experiencing life to the absolute fullest capacity possible. I also have had years of severe migraine pain. Chronic pain is no joke and is not something some can "see". I'm sending you big hugs and wishing for a very speedy recovery. I hope this surgery will be your solution to decrease an maybe even eliminate your migraine and other pain.
I have AS and have been told I’m somewhat hypermobile as well! Are they related, do you know?
@@lauren1218 EDS is a connective tissue disorder and it is also an autoimmune disease. Many people with one autoimmune disease will find they actually have other autoimmune diseases as well. That is because like the other body systems, the autoimmune system directly effects every other system in the body. It is that state of dis-ease or lack of homeostasis within the body over an extended period of time that causes inflammation throughout the body which then begins to break down aspects of those other body systems.... Like a slippery slope. Not all people with one autoimmune disease (like AS) experience this, but it is common. Like everything else in medicine, it would depend on your specific body and genetic makeup as to how your body will deal with AS and its symptoms and severity. I hope that helps
i was diagnosed with hEDS this year as well as MCAS and lupus sle. it’s such a relief when you find drs that validate and listen to you! i also had neck surgery and my c5 c6 disc removed and infusion. it’s been such a relief honestly.
This video broke me!😭 I have an auto immune disease/chronic illness & it can & has literally sucked the life right out of me at times- It's a continual grieving process. I have a hard time speaking about it bc 1. Not many people fully comprehend the amount of pain you go through daily. They may want to, but until you're "living with it," there is no comprehension. 2. Speaking it out loud just confirms to yourself that your body isn't normal. A body that is supposed to protect you is instead literally failing you. You compare your body to the body of others & it can bring you mentally down . 3. It's incredibly emotional. It is something non curable, just at times, tolerable. Medicine will always be something you rely on just to live.
It's good for my soul to hear you so raw & honest about it. It truly makes you feel like you are not alone, when most days, you feel like you are. The only thing that pushes me through daily is my children. I don't know where I would be without them as my motivation to just keep going.
Thank you again for being so relatable to us spoonies.❤️
I'm sending you all the love & prayers as you heal from this.
Brandi, like you, I've I've been suffering with chronic illness and autoimmune issues. I've been unable to work since 2015 and I'm on disability. Now I'm in my mid-40s, and I grieve every day for the life I lost....all the things I dreamed of becoming and was on my way to do just that....but my body just gave out. What a betrayal! It's been almost a decade and I still can't seem to move past it. What do I do now? What's my next chapter....will I even have a next chapter or is this just it? Your comment about the continual grieving process really resonated and moved me... because that's me too. And it's something that I don't hear discussed. Ever.
It is so reassuring to know that I'm not alone. I appreciate your bravery in sharing your experience and the frustration and sadness that comes with it. I've often thought about sharing that kind of thing in comment sections when chronic illness related topics come up, but I chicken out. After so long of being misunderstood from friends and family, health professionals who dismiss you, and so on, it is easy to get into the mindset that no one cares. You inspired me to open up--thank you. There is something cathartic about putting this out in the universe. Will anyone read it? Maybe it doesn't matter and the release *is* the important part. But while I'm feeling brave--and this may be kinda weird or forward--but if you'd ever like someone to talk to or commiserate with...I'm here. I can share contact info if you're interested. Chronic illness--especially when it is "invisible" can be such a lonely path. At any rate, know that you are not alone out there, my fellow Spoonie. I see you. ❤
I pray that you both will be healed and comforted in Jesus name!
Look up the Lion Diet. It has helped people with autoimmune conditions.
❤ this. You described it perfectly. Making me cry just to know someone out there understands. Thank u
100% agree!
I also have EDS!!! Welcome to the Zebra community! We are very low on spoons and our joints go out more than we do. I hope your journey from here gets better. Your pain is valid though. Don’t let any doctor, friend, family member, or stranger invalidate you. Your zebra family will always support you. ❤
I have EDS hypermobile type. I started a YT channel to share stories so we can all learn together. We need to spread awareness 🦓. I love sharing stories.
Prayers for Taylor and for your speedy recovery!
As a fellow “invisible” struggler, you have been such a beacon and force. What a relief to have an answer and at least one next step. We will be here when you return, I am hoping a smooth and calming recovery.
fellow EDS zebra here- sending you so much love and encouragement. i’m so sorry you’ve have to deal with so much pain and that it’s been so unbelievably debilitating, truly sounds like you’ve been through the depths of hell. thank you for sharing your story 🩷
I have EDS hypermobile type. I started a YT channel to share stories so we can all learn together. We need to spread awareness 🦓 I love sharing stories.
How many of us were holding our breath during this update?
So much love to you Taylor ❤
I feel so very seen in this. After years of searching for answers through multiple doctors, specialists, tests I finally got diagnosed with hyper mobile Ehlers Danlos Syndrome in March of this year. My ribs and spine hips, all of my joints shift and struggle to stay in place. I have severe chronic migraines all the time and I’ve always watched your content as you gave me so much strength. Now that you’ve been going through the same things, I feel even more deeply connected to you. I can’t tell you how many times I have had to sit and argue with a doctor that something is wrong. I don’t know what But please test me for something else. so many doctors and specialist said that I’m just crazy or that I am seeking attention. Come to find out after my EDS diagnosis, but I’m not crazy. My pain suffering all my weird issues all make perfect Clinical sense. I feel at 30 years old. I am just now trying to figure out how to help my body. Thank you for sharing so much of your life with us.
I didn’t get diagnosed with my EDS until January 2020 @ the Mayo Clinic by a Geneticist. Only 30 years after I started experiencing symptoms! I felt medically gaslit for the majority of my life! It sucks but I’m so thankful to finally have answers now!
I feel like I just read message I wrote myself - much the same experiences here. Am in my mid 30s with multiple failed spinal fusions and on diagnosed with EDS about 6 months ago. All of a sudden, the years and years of issues just made sense.
I actually think influencers and other well-known individuals with EDS have done a huge part of bringing the disease to the front of human awareness! It may not actually be as rare as people believe. That's my guess. Good luck to you!!!
I have it too! So glad to see more of us here. I even have a very small YT channel that I just started about it. Hoping to learn more together by sharing my experiences. I even have a video basically on this same thing. 🦓
Prayers and hope for a strong recovery I had spinal fusion in 2011 at 41 best decision ever my quality of life is 1000% better
As someone who lives with chronic pain I appreciate you sharing your journey. Sending love
I’ve been watching your videos on and off since before your accutane journey and I hope you’ve finally found something that will give you some well-deserved respite.
Hear me when I say, take ALL the time you need to recover! I've watched you for years and I so hope this brings you some relief. You work so hard and it's time to take care of you! Praying for you! ❤
I know this isn't your favorite subject to talk about but thank you for speaking up. It gives a lot of us chronic illness sufferers hope.
Wishing you a speedy recovery 🙏
As a Neurology nurse and following you for years taking your time to heal is super important. I wish you the best and see you when you return. Heal well.
We will always be here for you Taylor!! 😊
This brought me to tears. I’m so happy you never stopped advocating for yourself. I hope recovery goes as smoothly as possible and we’ll be here when you come back. ❤
My heart is broken into a million pieces for the pain you've endured for so many years. I'm praying steadfastly that this surgery will put you on the path to a full recovery for a full life. Love you!
I’ll continue to pray for you Taylor. You’re so strong. We will be waiting for your healthy return. God Bless you!
Well said Jennifer
@@PaulyDays-dg4nfwrong. As someone who was diagnosed with EDS 13 years ago, and have been living with debilitating symptoms for over a decade, this isn’t a healthy way to speak to a person with chronic illness. We don’t get healthy. Saying this to us is not only insulting but also hurtful because it’s something we are very aware we will never be. The language that you use with a person who has chronic illness is very important. Saying that you hope we have a good pain day, or that our surgery goes well, are great. There is no cure, EDS is genetic. It’s something we were born with. Asking if we have tried anything new lately that has helped. Or just to check in to see how we are feeling mentally is so kind, because your mental health is also drained from the pain. Over time it will actually require how the synapse fire in your brain. Its overwhelming. Please don’t ever just say to us about getting healthy.
Taylor, fellow EDS patient (with Chiari) here. Three of the best EDS knowledgeable doctors on the East Coast have refused to do surgery to fix a similar complication on me. I would be very interested to know who you ended up going to. I’ve emotionally tapped out from traveling, missing work, just to hit a brick wall.
Manifesting healing, decrease in pain, and increase in functionality for you. 💜
As someone with an "invisible" chronic pain disorder (trigeminal neuralgia) thank you for sharing your story. Dealing with chronic pain on a daily basis can be so debilitating but like you, I don't let it define me. Being grateful for the little moments does so much to help keep me going. Take all the time you need to recover, we'll be here when you get back.
Oh my gosh I've had three episodes of this & it is mind bending how painful it is! I'm so so sorry you're suffering with this! 😭💜
I watched my MIL suffer from this and it was heartbreaking. Meds stopped working for her, she couldn’t eat, brush her teeth, comb her hair or do anything related to the face without spasming in pain. After a lot of research we found an Endo Neurovascular surgeon in India who performed MVD surgery and she lived pain free for the rest of her life.
I wish you the very best
Haven't watched full video yet, but just from the title.... we are all thinking of you, wishing you the best and ❤ you!! 😊
Finished the video and wow Taylor, tears in my eyes as I type. Compared to you, I have had a miniscule fraction of dibilatating pain in my back, tried years of chiropractic care, decompression therapy, muscle relaxers, pain meds, dry needling, etc and I verbally said, "I can't live like this". Luckily, I was finally able to find some relief with PT. I say all of that to say, you are incredible! You have been dealing with chronic/debilitating pain for years and years and you still manage to put on a smile and make videos for your YT family. I remember you mentioning the huge disconnect between what we see on your videos compared to your daily life/struggles with migraines and such and how much of a mind F that was for you. This video really gave us a glimpse of what you go through. Please know we absolutely love you and will be waiting for your return, no matter how long that is. You don't need a stranger to tell you this, but please, please take more than enough time off. Your health is literally the only thing that matters! ❤️
I'm praying that your recovery is filled with peace and healing. I'm recovering from decompression surgery to treat my Chiari 1 Malformation. The last few years I've had neck pain slowly getting worse and so bad all I could do was lay in bed all day and cry. I finally went to a doctor who immediately sent me for a neck MRI where they found my Chiari 1 Malformation which was causing a build up fluid in my spine. Thankfully there was neurosurgeon in the next town over who had a special interest in treating Chiari. I had the decompression surgery about 4 weeks ago (long story short, they shaved down a bone in my skull to make room for my brain and to restore the proper flow of brain fluid). I'm healing well and back at work. It's hard to tell if the surgery "fixed" my neck pain since I'm still healing from the surgery and the incision on my neck, but I'm hopeful. I can't believe how I spent the last five years gaslighting myself about the pain like telling myself, "I'm just being over sensitive about the pain, it's not that bad, I'm just sleeping funky, blah blah blah." Instead of seeing a doctor.
Watching this video I’m reminded of what a strong, resilient woman you are. I wish you the best of luck in your continuing health journey! My thoughts and prayers are with you.
I'm amazed how much you've been able to accomplish despite living with chronic pain. I'll admit that this video brought me to tears. You are such a strong and positive person! Hope you have a smooth recovery. All your viewers will miss you dearly, but put yourself first before anyone else. Your health is a priority and we all support you! Sending lots of love and a big hug your way ❤ 🫂
Fellow Zebra here. I had disc replacement and atheroplasty between c5-c6 and c6-c7 a few months ago. I understand the struggle and I fully know how strong you are being for just surviving. I'm praying for you and a wonderful, easy recovery. You are a badass, I hope you find relief.
Taylor, I GET IT. People who don't have chronic pain have no clue how debilitating it can be, but also how much pain we are pushing through without anyone knowing. I call myself a "professional faker" because I can push through so much pain and fatigue that no one would suspect a thing. It's unfortunate that I've had to do that, but it's the only way that I can live. I'm on the same page as you! That's why you're my favorite RUclipsr and have been for 8-10 years (I've lost track of how long it's been) because you GET IT. Thank you for sharing about this. I know how hard it is to talk about.
I am praying for you and hoping that this recovery will be different, in the best way possible. Sending a virtual hug your way!💕
Side note, I'm so happy you have an answer! I finally got diagnosed very recently and it feels good to know exactly what I'm facing. Such a relief in many aspects!
I think I speak for all of us when I say I’m so proud of you for taking this time to heal. You will not regret taking a few months off for your health and you will not lose those of us who have been your ride-or-dies. We’ll be sending you well wishes while you’re gone and celebrate with you when you’re back! Take care, Taylor ❤
Wishing you a smooth recovery and good for you for advocating for yourself and seeing so many doctors to get answers tou need. Rest take care of yourself and recover.
Fellow zebra here. I’ve been following your journey for years. I also had a neck injury as a teenager. Both of my children have EDS. I hate that you have this!!! Thank you for speaking about this. It only can help bring awareness to us. Sending gentle hugs and quick healing prayers to you 🫶🏼🦓💜
I have EDS hypermobile type. I started a YT channel to share stories so we can all learn together. We need to spread awareness 🦓. I love sharing stories.
We love you Taylor!!! Get well soon ❤ 19:20
Here’s to a speedy recovery Taylor! We will miss you but please take all of the time you need
Taylor, I've probably watched you for 10 years at this point. When you had your last neck surgery and described what you were going through, I had just gotten diagnosed with EDS. It crossed my mind back then that maybe you were a fellow zebra.
I hope this surgery does everything it is supposed to and gets you real relief. Sending you love ❤️
It's funny how we can sense when someone else has EDS about her. I have EDS hypermobile type. I started a YT channel to share stories so we can all learn together. We need to spread awareness 🦓. I love sharing stories.
I’ve been chronically ill since 2008 and had to explain my health problems over and over, it’s exhausting but finally having a name to all the issues is so reaffirming. Finally getting an EDS diagnosis was life altering for me and everything started making sense, it’s like getting a sense of relief but also grieving all that time that you went undiagnosed and suffered. Sending you lots of love and healing, take extra care of yourself and come back only when you’re absolutely ready! ❤
Totally agree. Everything finally made sense and I was actually happy. I have EDS hypermobile type. I started a YT channel to share stories so we can all learn together. We need to spread awareness 🦓. I love sharing stories.
This is nothing like chronic pain or migraines but I’ve struggled with chronic fatigue my entire adult life and what you said about not being able to do things other people can is so real. It’s hard to not compare yourself to others. Your strength is very inspring❤
My sweet, sweet chronic pain sister!! I am watching this in a hospital infusion room while I get my umpteenth round of solumedrol (steroids-for my MS that is in a flare up). I feel so much for your situation! You are a warrior! Keep fighting!! 🖤🖤🖤
Hugs and prayers.
@@debbysharer104 💖
Oh my gosh Taylor, I almost started crying during this video. You are an absolute powerhouse to keep a career going for yourself through all of this! The art you create through all of this is absolutely amazing! Your videos are such a joy to watch for productive and creative inspiration!
You being able to just get out of bed truly amazes me and is one of the many reasons you’ve been such an inspiration for me. If you hadn’t pushed thru your entire life and fought to live, you likely wouldn’t be here today. Of course you’ll be missed but you take all of the time you need for yourself to heal. This seems to have happened at the perfect time having found “your person” to be by your side as you heal along with mom & dad. You deserve sooo many days where you feel amazing. You’re in my prayers for sure! Sending love and hugs your way❤️🙏❤️ (subscriber for 7 @ 7 years 😉)
I’ve had an autoimmune disease for 34 years, that took 22 years to diagnose. I spent years disabled and could only move my arms, and migraines also. The abuse I’ve been through in the medical system could be a movie. I’ve had the kind of pain that you think you might actually die, which I know you get that, but no doctors believed me and had no help. Doctors are very comfortable with the discomfort of women. I know several people with EDS. It’s such a complicated disease. From all the years I’ve known you and from what you’ve shared of your journey, just know you have what it takes to do this. You already have been. It’s a label and information. I understand. I understand so much. Ugh you got me crying there at the end. I can feel you get it and it makes my insides lurch. When you meet someone who has walked a similar path it’s so powerful, healing, and validating. I’m so sorry for what you’ve been through. Praying for you through this surgery and recovery. What you said about living life to the fullest, thank you, I needed to hear that today as I tend to isolate when it’s real hard and just think it’s not worth it. As you recover, and the low days creep in, remember your reasons why. For me, its being an auntie. Hold on to that. ❤🇨🇦
I have EDS hypermobile type. I started a YT channel to share stories so we can all learn together. We need to spread awareness 🦓. I love sharing stories.
@@DrReedB0928 I have a massage therapist with EDS as well as a friend. I’ve heard some stories, really tough ones. My friend is recovering from surgery, and like Taylor she is taking much much longer to heal. I’d be happy to share your channel with them. Thank you 🙏
My sister has EDS and POTS. Watching you deal with yours has helped me understand what she may be going though and talk to her about it. I hope you know you've made a positive impact! Good luck on your surgery ❤
I have EDS hypermobile type. I started a YT channel to share stories so we can all learn together. We need to spread awareness 🦓. I love sharing stories--definitely share with your sister.
Sending you all the love and prayers. May this surgery be the weight lifted off your shoulders.
made me tear up too LOL. As a fellow autoimmune girly, it can indeed feel lonely; I appreciated your hug and encouraging words. Youre amazing and I'm sure I speak for all of us who support you that we'll be here WHENEVER you come back! Wishing you a safe recovery.
I hope your recovery is surrounded by love, your favorite comfort shows, rest, scented candles, bomb teas, and peace. Wishing for the speediest recovery period for you 🙏🏼
Praying everything has gone well with surgery! I had disc removal and fusion of C5-7 2 years ago at 43 and I was on the younger end of people they recommend it for, but it has been amazing. I've gotten my life back. I was walking with a cane full time because my balance was so f'd up and i had constant migraines. I was terrified of spinal surgery and having a titanium plate in my neck, but it has made a world of difference for me. Migraines are down to 2-3/month, pain is almost toally gone, and all the numbness is gone. I hope this gives you your life back like it did for me.
I have never clicked so fast after seeing the notification. I struggle with very serious health issues like yours, where daily quality of life is severely affected. It is such a journey to find the right doctors to get a correct diagnosis and treatment. As I watch your videos, I am always encouraged that you are still pushing through your issues and have not given up on RUclips. You are an amazing woman, and I am sending so much hope and prayers for this next stage of your health journey. I appreciate you! 🥰🖤🖤🖤
Taylor, I had surgery on my spine in 2015. My disorder is so rare, there was only one surgeon in the US who knew how to perform the surgery I needed. My husband and I spent a month there and the recovery took almost a year. I fought so hard to find answers, and I'm so glad you have yours. I still live in chronic pain, but it is more manageable.
I will be watching your old videos daily to keep your numbers up. I hope EVERYONE will do this too!!
Taylor, hugs to you. Praying for you to get some relief from your chronic pain. Thank you for sharing your story. Namaste.
Was thinking about you today so I wanted to leave you a message. I hope your recovery is going well. We miss you, but of course your health is the priority!
As a fellow migraine sufferer, this makes so much sense. So glad you are starting to get your answers. EDS and POTS (dysautonomia), Endo, autoimmune issues, and neurodiversity are somehow connected, but researchers are just starting to look into this from what I've read. So many in the chronic pain community I follow are starting to get these string of diagnoses... I hope with giving things a name, we can advocate further for ourselves and get the treatment and relief everyone deserves. Will keep you in my thoughts, and will be here whenever you return! EDIT: Just finished the videos and the end got me in tears too... sending so much love, seriously everyone here cares so much and will be here for you always
Yes! The comorbidity between these chronic pain conditions & neurodiversity is going to be groundbreaking when they finally research it all...
Taylor, from all that you have shared, you have championed a life worth living. We are all so proud of the courage you display, and the vulnerability. Your parents are so fortunate to have raised a well centered and inspiring person. We love you and pray for the best outcomes for you. We’ll be here cheering when you come back to us!❤
As a fellow chronic migraine sufferer, mine also seem to be from my neck and I have EDS as well. I’m just struggling to find a specialist in my state for it but was diagnosed by my rheumatologist. We will be watching and waiting for your next video! You gave me more confidence when I was younger with trying to find foundations as a pale person!
Taylor, you are a warrior. I've had migraines since I was a little girl. They are so debilitating that sometimes, even death feels like a better option. I can't even imagine having 20+ a month. I'm praying for your recovery and healing. Big hugs and get all of the rest you need.
I can't imagine having surgery with EDS. I've had 5 neck surgeries, plus many other surgeries, and regular recovery is bad enough. Hope you get better quickly.
Totally agree. Healing is so different with EDS. I have EDS hypermobile type. I started a YT channel to share stories so we can all learn together. We need to spread awareness 🦓. I love sharing stories.
I hope everything went well! You are such an inspiration to those with chronic pain.
I am so grateful for you sharing and respecting yourself and your body while you heal. ❤ please take all the time you need. We will be here when you are ready.
We will miss you, but we will be right here when you're all healed! Good luck, T! Hope you're recovering well.
I'm sending you my love and prayers for the surgery and recovery to go smoothly and easily!! You got this, thank you for being here reminding me I'm not alone ❤
As someone with chronic migraine, you have always been an inspiration, and I'm very happy that you are getting tangible help! Whenever you are well again and decide to come back we'll be here to support your work! And thank you for sharing
Omg I’m crossing my fingers your finally get some relief with this surgery!! I’ve been watching you for almost 6 years and have seen you go into things so hopeful, only to be let down so badly, and it was so heartbreaking to watch. I don’t think I’d be able to be so strong if I was in your shoes..man, I just hope you can finally live without being in so much pain. I’m going to miss seeing your videos, but your body and health are the top priority, always. Just know that I’m going to be thinking of you and wishing you the absolute best while you’re gone, and we’re ALL rooting for you, girl. I wish I could give you the biggest hug. Take care of yourself, ok? We love you! ❤❤❤
Wishing you a speedy recovery! I hope you get some relief and have the time you need to fully recover mentally and physically. We will all be here when you get back ❤❤
Taylor! 🥹❤️ my heart goes out to you and praying for a quick recovery. You are so calm and collected in this video while talking about an insanely complicated surgery. You are a warrior and we are all sending you virtual hugs and support. Please take as much time off without thinking of needing to upload for us. As much as we will miss your videos for this period of time we want nothing more than to see a happy and healthy, pain free Taylor. You’re amazing stay strong girl!
The ending made me tear up ❤🥹 Thank you for being so open and honest with us.
My normal is pacemaker replacements every 7-10 years, so when you said neck surgery will become the norm for you I was like man I know that too well.
Sending you all the positive vibes, prayers, and hugs! Rest up and don’t push yourself too hard, take your time to heal.
Wishing you healing and recovery. I’ll be rewatching your older videos to get some algo action going while you recover with family and loved ones. We wish you the absolute best, Taylor. Take care of you. You are an inspiration to us all. Thank you for sharing your story with us. 💗
Sending you SO MANY hugs Taylor. I'm happy to hear that after all the doctor visits, researching, and, honestly, constant aggravation, you've received some solid answers. Please know we're all thinking of you and wishing you a speedy recovery. Please, please, don't feel like you have to rush back. If your recovery takes more than a few months or even a year, concentrate on that. We'll be here waiting. ❤
I hope everything goes well and you can finally find some pain relief after recovering from the surgery!
I hate how much we women have to advocate for proper tests and doctors to take concerns seriously. I am also shocked and horrified that you had to explain to doctors what EDS was. I grew up with people around me in healthcare so I had heard about it many years ago. Girl sending you so many prayers and wishes for recovery!!!❤❤❤
Awwww Taylor!!!! I want to give you the most gentle but tender hug 😢 I will miss you but trust you have a forever viewer here.
As a fellow chronic illness warrior, I really hope this surgery and your new doctor(s) help you make progress towards normal functioning. Please take all the time you need. Your physical and mental health are invaluable and should be cherished.
Sending you love and healing vibes on this next chapter. ❤
So so so very glad you are finally putting yourself first and not trying to work instead of recovering. Wish you the best recovery sending love and good wishes xxxx
There are too many words I want to say but the first set is a HUGE thank you for opening up about your symptoms, diagnosis, and the experiences you’ve struggled with and powered through. You are saving so many people’s lives due to your openness. I pray for you and a healthy recovery.
I tell all my patients that feel apprehensive or concerned about their health exactly what you stated, to advocate for themselves. I do my best as their nurse by communicating and documenting their comments/questions, objective findings, and my observations to their treatment team.
PSA, please speak up for yourself so that you get what you need and the doctors can record your details, even if you think it could be “no big deal.” Maybe I’m just an over-worried nurse, but if your condition has been chronic and you haven’t received proper relief or do not remember what it feels like to feel like the real you, that’s a really big deal, and I will do what I can to ensure the doctors hear you too. Wishing you all great health and happiness. ❤😊
As a person who lives with chronic daily migraines since the age of 9 and a full time job, I get it. I appreciate your transparency rather than saying you are ill, click bate and then say it's personal. I also travel quite a lot globally because I'm very used to severe pain. Last winter I found myself in a hospital in Finland due to a migraine that I couldn't break on my own. It made me appreciate our healthcare in America. I've also been in the ER in Italy and denied boarding due to what happens when I get a migraine. I know a lot of people who get occasional migraines but having chronic daily migraines is a whole other life. Be well.
Taylor, I've been watching you for years now and it is so fantastic to see you get some kind of answers and, I can only hope, some relief. Thank you for sharing so much of your journey with us as well as so much of your life. Sending you good thoughts during your recovery!
Taylor, just want to echo all these comments and send you love and healing. And if it hasn’t been said lately, I hope you know that who you are matters to the world. The things you share, the things you keep private, the encouragement and fearlessness. It makes a difference. The community you’ve built here matters. Rest and recover 🤍
I haven't been able to keep up with your videos a ton lately, but I see that zebra there, and I think I know what that means... :) Welcome to the club none of us want to be in! I've wondered for quite a while whether you had EDS. I was diagnosed in January. ❤️
We're a bunch of EDS babes, it turns out. Hahaha.
Sending you so much strength and love for your recovery. You have so much support here, and we will continue to wish you well until you feel well enough to work again! Take your time, and know how strong you are.
I have a loved one who struggles with EDS and it is an incredibly difficult condition to live with. I think you're inspiring and I hope wish you rest and healing with your loved ones. I hope you find relief after this surgery and I'll miss your videos. ❤
Wishing you all the best and hoping for a speedy recovery ❤
Thoughts and prayers Taylor! We love you. Feel better. You are a strong kickass woman. See you in the future when your ready!!!❤❤
Taylor, as a chronic pain warrior I know how much this affects your every day functions. I have surgery in November to help correct my pain and I cry daily thinking about a life without chronic pain. I don’t fully understand how people go day to day feeling … “normal”. I hope so much for relief for you and know that we ALL support you and want nothing but the best for you, in whatever form that can be achieved. So proud of you for doing the damn thing !👏🏼
All my best, most positive vibes, thoughts, and prayers. I hope the surgery is successful and recovery is as smooth and fast as possible. You probably hear this all the time, and may even be tired of hearing it, but you are so strong and brave. I admire your positive outlook despite such a enormous challenges!
Thinking of you and hope recovery is going well. Will miss you but please take the time you need and we will be here when you come back 🫶🏼🫶🏼
Hang in there, Taylor. We're all keeping you in our thoughts and prayers 🙏🙏. We'll miss you, but we know you'll return stronger and healthier than ever. Take care of yourself, and we wish you a speedy recovery! God bless you and your family!❤🧡💛💚💙💜❤🩹
You came into my thoughts and just wanted to pop in and say you are still in my prayers. Much love and healing. 💖🙏
I’ve had 2 kids. One emergency c sec. A few kidney stones and currently have cancer. Migraine is still the worst pain I’ve ever experienced
I'm so sorry to hear everything you've dealt with and are dealing with. Sending so much love and healing your way.
@@taylorwynn I started watching you 9 yrs go while on bed rest with my son . I am a good 15 ish yrs oldest than you so I know it sounds mom like to say it’s been such a joy watching you grow and change lol. It’s corny but true. I relate very closely to your health struggles and watching you navigate life is inspiring. From my heart. I know the lows that come with being physically limited and it hurts my heart for you. Sending all my love, peace and healing vibes🥰
I've also had kidney stones and migraines and I gotta say they are worse too! Because at least with kidney stones you get waves of pain whereas migraines it's just like PAINPAINPAIN continually pounding into your skull like a sledgehammer.
Flyyyyyyying to RUclips! A Taylor vid and baby asleep, hell yeah!
Even if the topic is not so fun. We are here for you and we will be! We support every desicion you make! Love from Germany 🖤🖤🖤
What a wild ride. Praying surgery goes well, and that you have a good recovery. Be safe, take your time, and come back when you're ready.
I was finally, FINALLY diagnosed with SLE - systemic lupus - after trying to explain to doctors for YEARS that my joints are painful and things just HURT.. the way I cried when I got the diagnosis, not from sadness but from relief bc there WAS AN ANSWER. It wasn’t in my mind. I remember as a CHILD my dad took me to get full body scans done and one doctor literally said to my dad “she may just want ‘a-t-t-e-n-t-i-o-n’” and SPELLED THE WORD (which I knew how to spell). It crushed me for like a solid decade. Take care of yourself friend and do whatever it is that can help you feel ok.
Fellow Zebra here!! Followed for years, since you had silver hair. I relate so hard to the teaching doctors about EDS and convincing them to run tests. For me it manifests with more leg/arm/finger dislocations than migraines. I actually discovered EDS through another RUclipsr called Jessica Kellgren Fozard. I watched her videos and was like, wait that isn’t how everyone lives? I hope everything goes well with the surgery 💕
Oh my gosh! What a journey for you. I sincerely wish you the best in your recovery and hope the surgery went well. You should really be proud of yourself for all you've been able to do while dealing with this kind of chronic pain. You've got a great mindset and spirit.