WHAT HAPPENED TO ME? RARE DISEASE CAUSED ME TO DROP OUT OF COLLEGE
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- Опубліковано 10 лют 2025
- I hope this video clears up any questions you might have had regarding what happened to me and why I was diagnosed with a rare disease... Sorry I get emotional in this video, it has been 3 1/2 years that I've struggled with this disease and up until now I've dealt with it pretty much alone (with the exception of my family). I hope you can find the value in me telling you my story and help shed some light on the real struggles people face behind closed doors.I love you guys and thank you to anyone who has reached out to me - You are why my life is so great now. Sometimes setbacks become our greatest stories. xx
If you or a loved one suffers from a chronic disease/illness please check out "The Spoon Theory" by Christine Miserando - butyoudontlook...
More information about Cyclic Neutropenia - rarediseases.o...
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Frederico Aldinucci - "Paradise"
• FREE MUSIC - Backgroun...
Not many people admit to being a mean person in their past. It was refreshing to hear ❤️
Discovered you a couple years ago because of your mlm videos, and I just stumbled upon this video today. I never would’ve guessed that you were once the way you describe here, because you actually seem so compassionate and emotionally intelligent now.
New sub here! I came to watch your anti-MLM videos after you were recommended by Hannah Alonzo. Even though this is the first video of yours that I chose to watch, I wanted to comment because hearing you talk about losing everything, even your identity, really resonated with me. From when I was a young child, I was always the 'super talented musician'... I practiced every day for hours because I loved it and it was me. I was one of the people going to university knowing exactly what I wanted to do and even left school a year early because I got accepted at 16. I was doing incredibly well and my future looked exciting. I never thought I would be stripped of that identity, but two years into my degree I started getting chronic pain through my hands and arms which prevented me from playing piano, using my computer, or handwriting. I was a composer so that meant I lost all modes of expression. It's a long complicated story but the brief version is that at the beginning of this year (almost 7 years later) I finally decided I had to let go of my dream. That the pain wasn't something that would ever go away, and that if there was a cure I would have found it by now. It's also been incredibly difficult holding onto the hopes I had because I was always reminded of the path I was on before I got sick. I decided to go back to university for psychology and hopefully eventually do research into the psychological links of pain & trauma (or something along those lines!). Well... a few months ago I found a good GP and when she heard my chronic pain symptoms in passing she mentioned it sounded like something she had just recently been made aware of by a radiologist she knew. LO AND BEHOLD I have a diagnosis (as of only a couple of weeks ago!!!) I'm still processing but it's made such a significant change in my mental health I can't even tell you. Having the hope that I could wake up every day and not be hit with immense pain, let alone the feeling of sitting at the piano again and being able to play (wow I don't even think I'm ready to think about that one yet)... I don't know what I would have done if I had gotten to this point before I changed my career path but I'm seeing it as a sign that I made the right choice for me, and I could cry just from writing this right now because I really haven't even spoken about it to many people. Here I am spewing my entire life story out in the comments section! Thank you for reading this far if you did and I can't wait to keep watching your content xx
I Have Rheumatoid arthritis. I got it when I was 29. I'm now 44. I take a lot of medication I take a shot every week just to walk and I doubled my size over the last 15 years. But as long as I'm walking I'm happy. Could be worse I could be in a wheelchair. Praying for you and glad you're getting better. 🙏✝️❤️
Any other spoonies out there?!?!
P.s. I love you guys. My DM's are always open if you need someone to listen xx
Kiki Chanel spoonie over here!!! ❤❤❤
Kiki Chanel you are so awesome! I'm a spoonies as well!!! I commented on the Christmas drill video, my husband and I were both in the army ng, and deployed to Afghan, and when I came home I found out I had gastroparesis. they thought I had mono at the beginning 😂 I'm so malnourished that I can barely walk up the stairs, I've had it for 4 years now, and I'm learning more, but I've learned to A: not trust western medicine and B: completely trust my instincts. keep your chin up, you're so awesome! us spoonies gotta stick together ❤❤❤
spoonie over here! being told over and over again by doctors "its just this" "your fine" when deep down you know something is wrong....the most irritating! thanks for sharing your story! stay strong!
i have always had bad back issues and doctors always say that its nothing and im overreacting until recently i had xrays and ultrasounds done and the found arthritis that has come early and i also was diagnosed with melanoma last year in july luckily i caught it early it was melanoma 1b , if it wasnt for my husband being in the army with great medical coverage i probably wouldnt of been diagnosed with it. goes to show you that everything happens for a reason now i dont go out withoout some sort of SPF . i am really fortunate and even tho the depression was there and i felt like life wasnt worth it i have realized life is to short to mope around and not be kind and open minded . hope you are okay you are really inspiring so glad i came across your channel
Kiki Chanel good videos
I'm dealing with a chronic illness now, myself. (Been watching your mlm stuff and this one popped up) there's nothing on this planet that will humble you more than when your body starts fighting against you. I like how you think of it as the catalyst to becoming a better person. I mean...same. thanks for sharing.
You totally made me cry. I'm so glad you're doing better. I'm not sure if you remember me, I knowyou get alot of comments. I have stage 4 breast cancer and going through chemo indefinitely. it's tough sometimes. I actually went for chemo today. I go every 3 weeks.
Thanks for sharing your story. I'm glad you're in a good place now. I'm going to check out that theory you mentioned. :)
Of course I remember you, Miss Jeann! I've spent a lot of time in hematology/oncology doctor's offices and I know that what you are going through is EIGHT THOUSAND times harder than anything I've dealt with! You always remain positive and supportive in my comments - Don't know how you do it!!! Wish the best for you and you've been in my prayers xx
Although I am just a subscriber, I remember you! :) Stay strong!!!!!
SweetJeann, also from me.. i wish you all the best, stay strong as you must be, when youre motivating other people here and i think also in your blog, thats awesome!!! Sry, for my bad g-english, hope you understand what i mean!;) glG from austria, kathi :**
SweetJeann ❤🙏🏻
SweetJeann I hope you get rid of it
Wow! The self-awareness and growth that you've demonstrated is impressive!
I think it says SO much about you that you can admit to being egotistical when you were younger (honestly, most people are guilty of that). Not many people can admit it though. I really respect you for that and I've just subscribed to your channel bc of it
.
Lol
I feel this video so much, I have type 1 diabetes and chronic migraines. Some days I feel normal and some days it's s struggle to go to work and complete day to day tasks. I wish I could save my spoons on the days I feel normal and share them with my fellow chronic illness people, I hope everyone can stay strong!
omg girl... I so feel for you. my son had neutropenia as a baby. he would have zero neutrophils to fight infection, we lived in the hospital. he was admitted at least once a month and I was told he'd either die from it or grow out of it around age 2. thankfully, by the grace of god, he outgrew it. scariest time of my life! it's the reason I went to school for nursing. good for you for talking about this. gives people hope. you didn't have to share and you did, thank you. hugs- xxoo 💜
Mandi DC I've had it since I was 3 and they said I would outgrow it but I haven't and my counts were zero for the longest time too(Autoimmune neutropenia)
It's really amazing that you are able to reflect on your old traits and improve yourself like you have. I'm sorry that your first doctor dismissed you and didn't take your symptoms seriously, thank goodness you found the right doctor. Thank you for sharing your story, you're a lovely person inside and out!
I'm a nurse and I actually take care of a kid with cyclic neutropenia! Every 3 months his WBC would go down, I actually took him to his hematology appt a few months ago and after several years of doing blood work they discharged him from the office because he has maintained his WBC over the past few year. His level is WNL but still on the lower end. If he has a temp we have to do a stat CBC as a precaution but just wanted to share this story with you! I've never heard of anyone else having it.
I have an undiagnosed serious illness. I have severe pain in my lower quadrants of my abdomen, generalized malaise and fatigue and pain, peripheral neuropathy type symptoms, and trouble walking & generalized weakness.
Fibromyalgia? Endometriosis? Multiple Sclerosis? Lyme Disease?
All of these 4 things are very likely. They're all so horrible yet I hope to get diagnosed soon. It's been 6 months of near constant pain. I'm 23, was a Charge Nurse at a skilled nursing facility. I now use a walker and have to be on narcotics every day. I feel like I'm dying.
I identify with you and your struggle. Thank you for sharing your story. It gives me hope that maybe one day I may have a sort of happy ending too.
You seem like a sweet person. I subscribed.
I hope your flare ups of your disease are very few and very far between 💘
Vicious Vee I have chronic lyme disease & your symptoms sound very very similar to mine. you've probably researched it, but there is a HUGE difference in chronic lyme and regular lyme- the treatments are different, the symptoms are different, the doctors are different, etc. i'm in extreme chronic pain every day, can't walk down my stairs, and have to have my parents basically do everything for me because I can't anymore. I just started treatment though, so hopefully I'll heal soon. but please look more into chronic lyme and co infections! it's a rapidly growing epidemic that doctors and the government are trying to cover up. while the internet has so much information, try joining a lyme disease facebook group just to get information, see real life stories, ask questions, and see if you can relate with any of these people. My prayers are with you! please look into it, it only gets worse with untreated time!
Vicious Vee also, the western blot test (the general lyme disease test that doctors give) are only 40% accurate IF tested within weeks of being bitten by the tick, mosquito, or horse fly. so research, and if you think you have it, find a LLMD (lyme literate medical doctor- a facebook group can help you find a good one hopefully) and they can either properly test you (if you have the money) or diagnose & treat you off of your symptoms.
Vicious Vee try googling Ehlers-Danlos Syndrome type 4.
Katie Horan - can I ask why specifically type 4? I have EDS with various crossovers and have all those symptoms plus many more, but it's not vascular type. Was just interested at to why type 4 and not just EDS?
+haley thank you so much for your message. My first Lyme test came out borderline and the second came out "negative". They even tested me for syphiis because it could give a false positive but the syphillis test was of course negative. I will look up everything. I found an LLMD in Los Angeles (30min away) but it's so expensive and I will need at least a month to save up. Thank god I'm getting disability payments. I will push kaiser to let me see a rheumatologist in the meantime. Also my moms friend said I can ask kaiser for an out of kaiser network 2nd & 3rd opinion. I need to explore this. Maybe then I can see that LLMD for $5 (my Kaiser co-pay) versus $300.
Thanks everyone for your help xoxo.
Not gonna lie, it's so hard to focus on what you're saying because your makeup is so perfect😂😅 Honestly you look like you have permanent photoshop
Now that that's outta my system I have to rewind to actually listen to what you're saying lol
saame:) i want to what eyelashes shes wearing:)
yes what are those lashes?!
Same 😂💗
right lol i keep looking at her highlight and lashes
Why don't you try respecting her as a person instead of just judging her physically?
most chronic illnesses are invisible and it's so hard trying to get someone to listen.. a doctor, friends and even your own family most are incurable and some progress as you get older. That's why I have a UA-cam channel.. connect with others that are feeling alone and spread awareness through videos so thank you so much for opening up and sharing. I'm happy you are in a much better place now 💜
It just goes to show you that you never know the battle that someone else is dealing with. It is so important to treat each other with kindness. We all have something that we are going through, some just hide it better than others. I applaud you for your courage and strength in sharing your story. You never know what impact it can make. You are making a difference. Much love. Xoxo
This is so heartbreaking to hear! I ended up having to go to a different college than i wanted to go to because i was getting sick over and over again for years, and it ended up being some type of immune issue as well(which i did get fixed). I am still fighting health problems and graduate soon, but i combat a sleep disorder as well as autism.
It's a shame when you know something is wrong with your body and not your mind... (Doctors) mostly don't believe you when you repeatedly tell them the same thing over and over!. Still going through the same damn thing...right now!!!! So happy you are better now that you have a diagnosis. Always be in good health!😍😘😗
Rare diseases like yours is what inspired me to change my major to cellular & molecular biology in hopes of doing genetic research. So many rare genetic diseases are not spoken about or researched for cures. Stories like yours touch me and let others know you're worth fighting for as well! Keep on sharing your story girl!
First off I just want to say that this came off as incredibly genuine to me. I am sitting here and actually crying because as someone whose been struggling with depression for about half a year I really do feel like I am at rock bottom right now. Holy shit, I really cannot stop crying. In this exact moment you are such an inspiration to me and I can’t thank you enough to have made this video. Really, just thank you.
This is the first time I have seen one of your videos. I am a 61year old mother of two older children. I have to tell you that you are wise beyond your years. There are people who live to be very old and never learn the things you have learned about yourself. I know a women who is 94years old and still believes she is better than anyone else and treats people horribly. You are a beautiful person inside and out and I believe you will go very far in whatever you chose for yourself. Always be true to yourself.
I'm so glad you made this video. I can relate a lot because I've been at rock bottom before because of a different disease. I'm glad you found the silver lining. I definitely did. Wishing you all the best. Xo!!
Neal & Nicole Ploudre girl congrats! I will have 5 years in April! One day at a time! So proud of you!
Congrats girl! I have two and a half years. It's such a better existence. XO
Neal & Nicole Ploudre me too! 15 months clean here daily reprieve
That is truly AMAZING.so much respect to you and love❤️
1 year 5 months
Wow. I’ve been getting more into your channel over the past few weeks and went way back. What a story. You’re awesome!
It takes a lot of courage and inward reflection to identify and correct our flaws. I commend you for being so transparent, honest and down to earth. You're a lovely human being.... I'm proud to be a subscriber and I will support you 100%. I see you doing great things with a bright future!!
Thanks for the open video. I really admire you. You are very strong and have a super outlook. We subscribers are all behind and support you all the way.
I have Vascular Ehlers-Danlos Syndrome and POTS I dropped out of high school half way through my 11th year but between hospital visits and taking care of myself I'm getting my high school diploma, I have a part time job, an internship, and starting college classes this fall. I've learned that yeah my health keeps me from going through with all the dreams I have had forever, but I can still do things and be deeply happy again. Your videos inspire me and you're so gorgeous.
God bless you Kiki, I’m sorry that you went through all of the suffering, and at the same time can be very thankful with you that you are such an honest person telling your journey to who you are now, and you’re still so young, and so wonderfully, uniquely you.
Love and prayers ❤️
You are so brave! So brave for admitting the mistakes you made when you were in high school AND for sharing your story. I have even more respect for you now because of that. So proud of the woman you are today! You should be so proud of yourself for how far you've come. I'm sure you still have bad days, girl you're human! But just know that you are an amazing young woman and should be proud of yourself!! 😘
I've been struggling with fibromyalgia, arthritis and degenerative disc disease. I found a Dr. that listened to me and we found a drug that has changed my life. It's important to have a support system and drive to find what makes you feel better. Best wishes for you 💜
This deeply touched me. Thank-you for being so open and honest with your audience.
I’ve never heard someone describe their change from being “shallow” as you say it to bring a whole person. I’ve been watching your anti MLM videos and I would NEVER have thought that you had EVER been anything other than introspective, passionate about good causes, caring of others and generally a very articulate, kind young lady. I experienced something similar; quick and easy success young- and then the “great fall”- does a lot to wake us up and give us pause, forcing us to say “WHOA. Life is more than ____. I need to change myself to make life MEAN something.” This made me cry. I was bullied in high school many moons ago and one of the bullies wrote me a letter saying “I grew out of that mentality, I’m so sorry for what I did to you”- and I find that people like her and you are better people than the ones who are “easily kind”; who don’t have to go through adversity to change. I knew I got a good aura from you, and I wish you well young lady. What a beautiful soul. (Are you polish!? You look a lot like me and all my sisters and cousins!!)
I'm so proud of you for making this video... we all have battles that people know nothing about so glad you learned something from it. happy for you
Love this -such a powerful message. Simple kindness costs nothing, yet means everything. Lived with physical disabilities my whole life, and have 4 college degrees, but working in oncology/hematology taught me the most rewarding parts thru my patient's who all went through so much. Love you, and am so thrilled you found ur passion, in spite of it all. Thank-you for sharing xx
This video was so helpful. Rock bottom is not a place anyone wants to be, but a place we all know about. I'm there now & I feel like I'm never getting out. But I just have to be patient & look for the message in the situation that I'm going through, like you said. Thank you for being brave & making this video! xx
Wow I’ve been following you for a while now & just watched one of your recent videos. Decided to sort your videos by “Oldest” to see where you started out & I am SO glad I found this from you! I have so much more respect & love for you as a person now & I can so appreciate your candidness about all of this. I deal with multiple chronic medical problems & I can only imagine getting diagnosed with something like that especially during that time of your life. You are so strong & so right! God has a message for you in everything, you just have to look for it. He brought answers to your life & helped you to become a much more loving & special lady 🙏🏼💜✝️ God bless you Kylie!
I’ve been watching you for a couple weeks now and thought you were so approachable. Now after watching this I think you are absolutely incredible!! You have a beautiful face but you have a beautiful soul also!! Many many prayers for you!!
I am sorry to hear about your struggle but happy you're in a better place now. I understand your pain because I've been through a similar situation where my life was threatened by a rare disease and I literally had to stop everything I was doing, all my music projects because I became very ill. I was lucky I had finished school and was not working a regular job at the time, because otherwise I would have had to drop out of school or quit my job. I was spending most of my time indoors, in bed and I could not go out because I would immediately get sick. I had flu symptoms eveyday for almost 15 months in a row, among other very serious symptoms which included my eyes, heart, neurological symptoms ( sensorial symptoms), digestive, thyroid, hepatic, kidneys problems, chronic sinusitis, even my menses were effect to the point that my estrogens were extremely low for a young adult. I developed eye floaters and tinnitus, symptoms I will have to live with for the rest of my life, because there is no cure for that. That affected my hearing and vision, hearing is an issue because I am a singer I could not go to the mall, movies, parties, literally no place with a lot o people. Sometime I would get a recurrent cold just because I opened up the window and some virus found it's way into my room. I live in Los Angeles area, which means we don't get harsh winters. The doctors did not know how to help me, I was literally left to die, just because what I had was so rare and they were scared and not prepared to deal with a patient like me. My diagnosis was finally confirmed: I was poisoned and the intent was, as one of my doctor's admitted, criminal. My immune system was compromised and I could not fight any infections, the mercury, uranium, tin, barium, strontium and other heavy metals collapsed my immune system. Now, today, I am in a better place, I am not completely healed, but I feel a lot better. My immune system is getting stronger and I can breath. Nasal congestion was a huge problem back than, when I could literally not breath at all for more a year. That was really hard to live with because I could not eat, nor sleep, nor sing and I am a singer. You cannot sound nasal in front of a $10,000 mic. My producer was waiting for me in the studio but I could not deliver and I had to postpone indefinitely all my projects. My husband was affected too by the high levels of uranium and he's also getting recurrent infections. Blood tests show the decrease in white blood cell, lymphocytes and neutrophils. I am thinking to make a video and share my story and how I managed to remove most of the poisons from my body, when the doctors did not know how to address my case. First doctor refused to further investigate me when she saw all the poisons in my hair, nail test results, she got scared because she did not wanted to be witness for my suffering in court and 2nd doctor I went to helped me confirm my diagnosis through testing but said there is no treatment for what I have and literally left me to die. I had to do my own research and find a natural way to remove these toxins, since my body was crashing and there was no way I could live with those poisons and symptoms. Not to mention that me and my husband were preparing to make a baby and now that has been delayed. Nobody whats to give birth to a baby with birth defects, dementia or other issues. Sometimes I get sad looking back where I was, how close I was to see my career goals achieved and how my projects and life have been delayed and how much money we wasted on doctors, test results and everything we had to do to remove the heavy metals from our bodies but I keep the faith that God will make us justice and the person responsible for this will be held responsible soon and our lives will
I think my angels have guided me to this video today. Thank you so much for your spirit and positivity. Many blessings to you! 💖💖💖
A year later and still random fans are crying to your videos. I'm 21 and this helped me a lot. We need more strong role models like you in the world. Please never stop being your incredible self. ♡
I just started treatment for Behcet's Disease. It's difficult and makes living even harder. For me, fully online degrees helped me get back to school so I could continue my education. Now, I'm working on my Master's. Despite courses being fully online, the pain and fatigue make anything difficult. Hang in there. Your strength in this helps me see there is still a silver lining somewhere.
I just wanted to comment and say that I have been watching your videos for years, and this one really resonated with me when you posted it 4 years ago because I have some autoimmune issues that I struggle with, and I appreciated hearing your story. I am in nursing school now and we are studying hemology and one of the medications we need to know is Neupogen. I remembered you talking about it in this video and searched for it to rewatch! Now that I know more about disease processes I understand what you have been going through with this disease. I hope you're doing well, and thanks for sharing your life and story - it sticks with people! ❤
I have HS ( rare disease) PCOS, endometriosis, osteoarthritis, and other things. I went from being able to do anything to NOW not being able to work or pay for doctors OR my medications... getting sick IS humbling... it will be ok sweetie. God bless you. I'm sad that you're sick...but glad a lesson was learned.
Ananka Brand HS... Hashimoto's? A youtuber named Kendall Rae has that and PCOS. I love her.
Are you coping with it I just found out about mukagel look into it I'm not sure if I spelt it ryt but if u reply maybe I can help more take care and be strong sweedy ..I know it's easier said than done x
Manuka Honey. I’m looking into that as well.
Ananka Brand
Ananka Brand CDC
I'm also living with a chronic illness and REALLY appreciate you opening up about yours! Your story is SO similar to mine and it definitely resonated with me!
I would love to see more videos on how you deal with your illness on a day to day basis and how it fits into your life. I LOVE the positivity you bring into your story, into your life❤❤
I so understand what you've been through / are going through. I was diagnosed with lupus about half a year ago and it was so rough at the beginning. You're so strong and I'll be praying for you!
Brooke H I'm so sorry that you have lupus 😢 my grandma has it (she was diagnosed in her late 50s) and it's been really hard for her. It makes me terrified because I have some of the same symptoms that she had in her 20s and it's hereditary. I hope your pain is minimal and that scientists can find a cure so people like you and my grandma are pain free 💜💜
Brooke H 💜
GirlBlog thank you for the kind words 🙂 the pain now has actually been very manageable compared to what it can be and has been in the past and I'm so blessed for that. I hope you never have to go through this and that you keep your health. Prayers coming your way 💜
Aw Kylie, thank you so much for sharing your story! You're more inspirational than you may think. I had a similar realization a few years ago after a very different disease of mine came to light. Thank you for using your platform for good.
Sending you love girl! I'll keep your health in my thoughts, I hope you continue to improve and get stronger xxx
@Kiki Chanel ...Thank you for your honesty and for sharing your story. ❤️ I’m at rock bottom with Bipolar Disorder Type 1 & Anxiety...I feel stuck. Some days I can’t get out of bed. Meds that work well for others, often do nothing for me. I was diagnosed at 19, and am in my 30s now. I did manage to go to school and have a career, and then 5 years ago, everything fell apart. All the meds and therapy haven’t “cured” me or put me back to a functioning level like I used to be. But you said something important that I needed to hear-to see the message in what happens. Thank you for your kind video. 💕
so proud of you. you are so strong and such an inspiration, here for you.
When we are young we all make mistakes, sometimes act out of pocket and have things we regret doing but also learned valuable lessons from.
What tells me you are a GOOD HUMAN overall is that you COULD have (and MANY people would have) told this story WITHOUT mention the parts where you were egocentric etc etc. some people MIGHT have copped to some, maybe a few to all of it, but dismissed their role in it and given excuses. I felt like you actually took accountability for your actions and genuinely came from a place of~ I want to be honest and I want others to learn from this!
So KUDDOS TO YOU!!! You see someone’s true character not when they are doing well and life is great. You see people clearly when there are mistakes made, tough times, their back against the wall or life is all around tough. You showed who you were today and shouldn’t get too hung up on the person you were BECAUSE of the person you became and truly where underneath all the teenage mistakes and angst.
I’m sorry you had to go thru this and specially during such a tough and transformative time for young adults. Injections every two weeks are a real killer. I have Ehlers Danlos Syndrome and Psoriatic Psoriasis pretty severely and have to inject every other week w two syringes of Hum!ř@. And that was before they took all the yucky stuff out and it hurt like a bïťçħ! I’m glad you were able to find a diagnosis “quick-ish” tho. Good luck and good health ❤️🩹💖
Yes I'm happy your strong and your getting better. I got diagnosed with lupus 7 years ago when I was a senior in high school. So I can relate ! Keep your head high and continue to do enjoy the things you love ❤️
I notice so much growth in this video. Never lose that. It takes a strong person to admit your faults, and to desire a change in your life. You are beautiful on the outside, but now you are beautiful inside as well. That's where true beauty emanates from.
notification squad ❤ .. I love you so much, you're beautiful & one of my inspirations! Stay strong please, God will see you thru! 🙌🏼❤
you're sweet thank you!!! xx
This is the first time I’m seeing this video, though I’ve been watching you for a couple months now. You’re the first anti mlm person I found and the first person to tell me what an mlm even was lol. I NEVER would’ve guessed you went through any of this, you seem so together and sure of yourself. And I realize it probably took time for you to get there, and get back to yourself. You are honestly so inspiring, thank you so much for telling your story. You’re beautiful and I’m so glad I subscribed 💜
You are seriously amazing. Stay strong! I'll be praying for you!
Thank you for posting this
Donna here.
Kylie, I am so proud of you. Thank u 4 sharing a part of u with us that can be so painful to discuss. I can't imagine how many lives u touched today.
God bless u, Kylie.
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I’ve been watching your video all year and decided to go through some of your old ones. I’m so moved by this, because I had very similar health problems in college and in my adult life. There’s always “why me?” moments, but more so all of these challenges have made me who I am as a person. I knew I liked you and your heart, and this video solidified what a wonderful person you are. Thanks for sharing your wisdom, Kylie!
thank you for your story. I have a condition were my stomach acid doesn't dissolves all my food so I get extremely painful stomach pain in my ribs that keeps me in bed for weeks at a time which has also made me gain a lot of weight which had been hard it took me over five years of doctors and er visits and them telling me I just had a bladder infection before really finding the cause it sucked crying just from breathing cause it hurt so bad for that long but now I rarely get that pain. so happy I found someone else who knows how hard it can be thank you so much
Can u contact me?i have same..no cure for me
Aw I’m so sorry to hear you went through this and go through this❤ you are so strong. I have been through my fair share of learning disabilities and mental illness. As you grow you find yourself and except yourself and learn to love yourself.
I was diagnosed with ms after experiencing traumatic brain injuries from abuse. It has been difficult to adjust but I am so grateful for all I learned from the experiences. I believe in sharing these difficulties and how we cope with them so I made a video about it as well if you want to check it out on my channel. I really love this video and hope you make more like it!! ❤️❤️❤️ I also totally identify with people not believing what I knew in my heart to be true, there is something so dismissive about it and it hurt my heart.
Holy crap! Thank you for telling your story and using your platform to teach tens of thousands of people about your disease. One of the hardest things to deal with for people with chronic diseases is that you can't see anything wrong on the outside. Keep up the good work!
I understand...I have chronic fatigue syndrome and am I guy. there is a huge stigma against being male, gay and having a chronic illness.
Faizal Alladina how did you get diagnose with that? I know this comment is from three years ago lol but I swear sometimes I think I have cfs but I don’t even know how to go about finding out or getting diagnosed
I'm so sorry you've been through so much, but you have persevered! I'm so glad you are happy now, and also dealing with your disease. You are beautiful on the outside, and after life's lessons a beautiful person inside too. I can see your sincerity. I wish you all the best.
It's very strong to admit you used to be a "bad" person. We live, we grow. Big hugs!
You are so sweet ! You are growing! I suffer with depression and I am at my worst ! I am praying for you and everyone else that has commented with problems ! Thank you for this video
omg that is so crazy. I am so sorry to hear this happened to you and you got it so young. I can't wait to learn more about this rare disease. You are extremely beautiful. I hope you last forever!
I have undiagnosed illness that affect between adrenal gland and kidney. Only symptom I have is chronic hyponatremia, low renin, low aldosterone, and sometimes high cortisol. My doctor tried millions of test head to toe and saw all of specialist out there and they still don't know answer. They always call me I'm a mystery and It's so annoying sometimes. It's been a year and I'm junior in high school. I know how u feel about going to college when ur sick and trying to make it to class. I'll pray for u and hopefully u can get better soon😄
Kylie - I randomly stumbled upon your channel and first watched your Sephora one and then was curious about what this one was, as I've been struggling with unknown health afflictions for several years. First of all, I just want to say you are a beautiful person inside and out. It's very courageous of you to not only share your health story, but to humble yourself and talk about your past, and how you've changed as a person. Our greatest obstacles often lead to the greatest callings. I'm sorry for the struggles you've had, but I see how you've learned from it, grown from it and become better from it....and now you're sharing your story and inspiring others. I'm glad you're feeling better! I''m also glad that you're finding your identity in something so far beyond surface level, athletics or even outer beauty. Most people cannot even admit that they were once shallow or thought they were better than others...and hearing you talk about this and seeing you get emotional, I can tell how very sincere you are. I too have had some fairly unusual successes in my life, and I too have struggled with some health issues that leave me not feeling well most days. I had to learn what's truly important at the end of the day. I felt that even as a 32 year old woman I was able to relate to you and what you're saying. I too used to have my identity in something else - it once seemed like self-glorification and self-seeking for me at one time. Now it's all about Christ....he's who defines me and he's my identity. Anyways, I know we've never met...but I just wanted to tell you I've really enjoyed your channel today. I also wanted to encourage you to keep up the great work and to keep your beautiful heart! God bless you, sweet girl! All the best! -Holly
Kudos to you for reflecting on your negative traits. Life has a way of kicking the pedestal out from under you, the trick is learning from the experience...I can tell that you have!
First of all, I am so sorry that you had to deal with this. I applaud you for finding the positive and learning to deal with/handle this disease. Bravo for finding your way back to yourself and for making the best out of a cruddy situation. Thank you for sharing.
Thats awful. im so sorry you have to go through something like this. I got really sick 5 yrs ago. kept going to docs. Finally was loosing feeling in my face and long story short I have Lymes disease. It really sucks when you know something is seriously wrong and people keep dismissing you. I thought I was loosing my mind
exactly :( i'm sorry that you relate to my struggle but I'm glad you found a diagnosis! xx
Feels strange to 'like' this video since it actually made me teary-eyed. I have a rare disease as well and it took one year and 9 months before I was finally diagnosed. Every doctor told me it was in my head. Doctors sometimes just don't want to bother digging deeper and it's an awful, awful experience to go through that.
I really hope you are doing so much better since making this video. I've only just discovered your videos an hour ago and I've watched 3 and subscribed as well. You are a remarkable young woman and you should be proud of yourself. If I had a daughter, I'd want her to be like you.
Kiki; seems, without really knowingly trying, you've learned a lot of life's lessons in a short period of time. Bless you for figuring things out, finding your place and sharing your experiences. Tenacity
I really needed this today. I'm not dealing with anything serious like chronic illness (btw you are awesome and strong) but there are random negative things that keep happening and I'm at the end of my rope with it all. but this video has helped me think about it and to see something like this from someone who I wouldn't expect (since your videos are always about positive things and beauty and stuff) has helped me. thank you!
Hugs💗 undiagnosed. The dark moments came down to quality of life here too. Thank you for sharing
I’m super late to the party here, I know, but I just saw this. You may never see the comment but I really hope you do. My mom is going through chemo and had to get the same shot for her white blood cells with the same side effect of intense bone pain. Oddly, what fixes that almost completely is if you take Claritin. It can be OTC non-brand name but if you start taking a few days before and keep taking it, the bone pain is lessened significantly. It’s helped her tremendously. Maybe you already know that, or don’t need the help now, but in case you do see this or if others do, know that this is recommended by doctors and nurses (usually to chemo patients who typically go through this). And thank you for sharing your story. That can’t be easy and you’re an incredibly brave person for being so open and honest. Since finding your channel I’ve really appreciated these videos. So thank you.
Awwww.. I am so sorry! Stay strong! You are a beautiful young lady!! Love ya
it's okay!! :) don't be sorry!! love you 2!! x
Kiki Chanel God Bless You!
I don't know how I missed this video! I know *exactly* what it's like to be sick but not "look sick." (I actually made a long comment in your "Spoonie" thread. But you are so beautiful. I'm really glad you've chosen to focus on what good has come out of everything. And the fact that you can look back & see that maybe you weren't the greatest person as a kid, just shows what a beautiful heart you have *now*. I wish you all the best, & I will always be here watching your videos! ❤️❤️
I had a very similar experience being a soccer player my whole life then quitting freshmen year of college at a d2 school. that really was all i was known for and was my only identity too. i've dealt with depression and this is now my 3rd semester out of school. I have really discovered a new identity too and new passions since dealing with my mental health. I plan on going back to school and studying something im ACTUALLY passionate about. Thank you for sharing your story 💖💖
omg :( we have almost identical stories... how crazy! I wish I knew that other people were going through the same thing at the same time that I was.. would've made it so much easier! but anyway... we are are strong and happy now and that's what matters :) xx
Kiki Chanel when i first found your channel and found out you used to play soccer i was like yes girl! a lot of people struggle with their identity after sports, not having a cookie cutter path through college, and a lot of people really aren't self aware in their late teens early 20's. Going through something tough really does make us stronger, better people. thanks again for putting your story out there because it can really help girls who are struggling!
Lauren Frey r BBB
b;n.@uuhuuhuyyhhh GGG
Lauren Frey same except not being a nurse. My whole family are nurses and doctors and i always wanted to be one. Got to college couldn't do the work got behind when switching my major and almost flunked out. Went through major depression. I still do honestly like tonight but I do believe everything happens for a reason. Maybe god was saving us for something greater.
This world is enough to depress anyone. On top of all that the high expectations from the parents and the pressures in schools from day one.Who has a normal life,is it even possible anymore?
You are such a beautiful soul. I've never felt like I've known someone through a computer screen, but I can tell you are just such a good person. Thanks for sharing your story. We all suffer from something and it's nice to hear from others that we aren't alone. You're amazing.
How sad that all it could have taken was a CBC(complete blood count) to find out you have a low WBC(white blood cells)count I'm so sorry girl stay strong
Spoonie! I hit rock bottom when I went got to college. But going through that has made me a better person and it really helps hearing from people who have gone through a similar experience. Thank you for sharing. You are so strong. ❤️
Thanks for sharing such a personal story.
My 4 yr old was watching with me and he kissed you on the video lol he said "she needs a kiss, she's pretty"
Keep strong!
I feel your pain doll. I have a similar story and we are still working on pinpointing the actual autoimmune disease. It's been years and I'm 46 years old. I'm glad they figured your's out early. I believe everything happens for a reason and in God's time. You have a platform to help a lot of people in many ways. I'm new to this entire UA-cam thing and I believe I was meant to see your video for whatever reason. I'm sending positive thoughts and prayers your way doll. Much love!
I know how you feel. I was born with neutropenia and still have it today. Just remember to take everyday at a time. ♥️
Thank you for this video. My daughter has mutation spherocytosis gilberts syndrome cyclical vomiting and abdominal migraine. We watched this together and thank you for your bravery. The more people talk about rare diseases the more awareness we all gain
thanks for sharing your story!! xx
Just came across your MLM vids, love them, and I saw this and had to watch. Thank you for knowing you were worth a second chance and thank you for being brave enough to share your story with all of us. It will undoubtedly help more people than you know!!
I am also a spoonie 😉 Diagnosed at 19 with Endometriosis and Ovarian Cysts, and in the 22 years since, I've also been diagnosed with Interstitial Cystitis, Fibromyalgia, Myofacial pain, Chronic Pain, Degenerative Disc Disease of the Back and the Neck, Arthritis and have had 20 surgeries and a knee replacement. I'm 41 now, my body feels 80 though! And its hard to explain to friends and family why I may not be able to do something, but I try to keep going. Thank you for posting this, it has helped me a lot! Keep believing in yourself, you're a beautiful person inside and out!! 💖
You should be extremely proud of yourself!!! You have grown up and owned up!!!
You are so well spoken, beautiful, and inspiring. I was diagnosed with an autoimmune disease at 12 years old, my body attacked and ravaged my platelets. It took 10 years of treatments, chemotherapy, and finally a surgery to combat the issues this disease caused. It changed me. It made me more aware of other people's feeling and struggles. I taught me to be sympathetic towards others in a whole new way. Your story was so genuine, thank you for sharing it with us❤️
i have lupus disease i know how hard it is to goo through an autoimmune disease it really sucks! love your channel love your make up please do a tutorial on the make up you are wearing on this video💚💚💚💚💚💚
My husband asks me why I watch your videos...and I always tell him you are so down to earth. Never judge someone without knowing the whole person. So glad that you came out of this a new person.
You are fortunate to be so bright and philosophical about this experience. Many people would just come away bitter and angry. But you were able to learn and grow because of it. You were able to benefit from it and become a better person with an appreciation for life and other people you didn't have before you got sick. Listening to how sensitive and insightful you are it's hard to believe you were ever shallow. I wish you all the best and thank you for inspiring everyone who hears your story.
The upside is that you really grew from this, beauty and brains is an admirable thing. I think I lot of young, beautiful, talented women have a bit of an ego complex that gets broken down over time one way or another, myself included. I got a wakeup call at age 17 that I was very sick, no cure, then another hit at age 26, a second illness with no cure. Really changed my perspective on life and turned me into a very selfless, empathetic, kind and loving young woman. You're doing great, and I hope you continue to do great ♡ sorry to send this from my anon account, I forgot I wasn't logged into my main account :X
I was tearing up, like for real. This was so touching and inspiring! I love these videos so much! You honestly seem like such a great person, thank you for sharing❤️
i cant stop looking at you makeup and skin.. its so flawless. You stunning. so sorry you had to go through this. im not even finished with this video. i just know its gonna make me tear up.
It's a pleasure to meet you Kylie! My name is Emily, and I have a Mystery illness at this point. I deal with Chronic Widespread pain and fatigue every day. My story is long, but to summarize; I've been a singer/performer my whole life. I was singing at paying gigs, asked to audition for The Voice, and was a happy 17 year old. Then, the pain came. I can't work anymore, and thank God my boyfriend supports me. I know most are not as lucky.. At this point I a lot of my time is spent in my bead, because doing anything hurts me. In a way I feel like I'm losing the performing part of myself..so I started making videos on this channel. They mostly revolve around Chronic illness, Mental health, and Makeup (More makeup to come ;) I go to multiple specialists and I have a kind pain management team that helps me juggle my medications. Life is not perfect, but I try to see the beauty in everything, and I know one day I'll find a treatment that really works for me, but until then, my job is to take care of my body. Thank you so much for making this video, and I would love for you to check out mine in your free time
Decaf Drugs I had chronic wide sprain pain too and I tried going on a paleo diet and it really really helped! Maybe try this out! Much love
Decaf Drugs Have you ever looked into chronic lyme disease? not lyme disease, but chronic? I have it, and have had it (unknowingly) for about 3 years now. it was my mystery disease. i saw over 40 specialists, went to the mayo clinic twice, was constantly told it was just anxiety, costochondritis, chronic fatigue syndrome, fibromyalgia, but it wasn't. one day I stumbled upon a documentary called "under our skin" and instantly realized, wow, this is what i have. the common test for it- the western blot test- is only 40% accurate IF tested within the first couple weeks of being bitten by an infected tick, mosquito, or horse fly. it can remain dormant in the body for years, or not at all. over time, the bacteria move from the blood into the body's tissues (muscle, cartilage, ligament, etc) and form cysts around themselves- thus making them even more undetectable. it sounds stupid, but the doctors and government are trying to hide and cover up this fast growing epidemic of a disease. please, watch the documentary! if you don't want to, at least join a lyme disease facebook group for a day. just read people's stories, questions, advice, or even ask questions yourself. it is SO helpful. if you end up thinking you do have lyme disease, try to find a LLMD (lyme literate medical doctor) in your area because they are the only ones who will take you seriously and/or treat you. my prayers are with you! and again PLEASE look into this, i have been living with it for 3 years, i had to drop out of high school & college, lost all of my friends, and am 98% bedridden now because I went so long without a diagnosis or treatment. i'm on treatment now, so hopefully i'll see improvement soon, but this is a real disease that doctors are trying to hide. it's an epidemic, there are hundreds of thousands of people across america living with this (knowingly and unknowingly). so i'm begging, please look into it because if you do have it, it can and will destroy your life
Thank you so much for reaching out to me, my heart hurts to hear about your long journey with this. I can't believe how strong you are to go to so many doctors, and do so much research. You sound like you really know your stuff, and I would love to know more. Please DM me on instagram @OveractiveDreamer so I can learn more about this. I am currently being tested for lyme, and my doctor know's we will have to do it multiple times, so that's a good start. Never stop educating people and sharing your story. Your comment alone inspired me today to make a to do list.
Have them look into CRPS
Decaf Drugs have you found a diagnosis yet? You sound alot like me. I keep being told I have fibromyalgia but I'm convinced it's chronic Lyme
I have CRPS/RSD (Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy). I was diagnosed a few years ago (I'm now a senior in high school). I homeschool now and don't have a social life (at all), but I try to focus on school and what I want to do growing up. It was so hard for me, and I really want to make a video about how I'm getting through it and coping with the chronic pain, however I feel like not many people would watch my video and I don't want to tell my story for the 100th time when no one is really listening, ya know what I mean? But I'm glad you made a video about your rare diagnosis, and it really helps to raise awareness about all types of chronic pain. You're giving a voice to so many who feel like they can't be heard. Thank you!