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Villainari_
Canada
เข้าร่วมเมื่อ 13 พ.ย. 2016
Find me on all my socials linktr.ee/villainari
My name is Ari. My life forever changed in 2008. I am a cancer survivor I have Ehlers Danlos, postural orthostatic tachycardia, and mast cell disease.
I am not my diseases. I am a survivor, a rare disease fighter and I live with invisible illness. My channel is about me and my journey and how disease tries to rule my life, but I continue to be resilient.
Check out my coloring books on amazon
Blind Contour Coloring Book tinyurl.com/mr3macv7
Horror Reverse Coloring Book tinyurl.com/3s9z9m93
Ink Blot Coloring Book tinyurl.com/mrxf9j6v
Coffee Artist Coloring Book tinyurl.com/y838rtb4
Blind Contour Coloring Book 2 tinyurl.com/44td8bc7
Meditative Coloring Book tinyurl.com/ms27hn36
My name is Ari. My life forever changed in 2008. I am a cancer survivor I have Ehlers Danlos, postural orthostatic tachycardia, and mast cell disease.
I am not my diseases. I am a survivor, a rare disease fighter and I live with invisible illness. My channel is about me and my journey and how disease tries to rule my life, but I continue to be resilient.
Check out my coloring books on amazon
Blind Contour Coloring Book tinyurl.com/mr3macv7
Horror Reverse Coloring Book tinyurl.com/3s9z9m93
Ink Blot Coloring Book tinyurl.com/mrxf9j6v
Coffee Artist Coloring Book tinyurl.com/y838rtb4
Blind Contour Coloring Book 2 tinyurl.com/44td8bc7
Meditative Coloring Book tinyurl.com/ms27hn36
Feeling Super Stuck Lately
**Please note this is not to be used as medical advice, Chronic Heart 2 Heart is a Podcast where people with complex, invisible diagnosis share their stories with the internet. It is simply a podcast of information sharing and caring**
This is a call to anyone in the community who has mental health diagnoses/chronic health conditions or who is considered to be disabled, if you or anyone you know would be interested in being interviewed for my TH-cam channel and sharing about your life with your diagnoses please message me I would love to have anyone wanting to participate in my new podcast Chronic Heart 2 Heart.
Posting new podcasts at least once a month for now due to the documentary filmmaking that is happening.
I aim to raise awareness for rare conditions and bring about hope for others living with chronic health conditions. I live with Ehlers-Danlos syndrome, hyperPOTS, and MCAS. I want to help others share their stories Rare and complex illness needs more awareness, and people living with complex health conditions matter too.
Feel free to join me on social media
linktr.ee/villainari
This is a call to anyone in the community who has mental health diagnoses/chronic health conditions or who is considered to be disabled, if you or anyone you know would be interested in being interviewed for my TH-cam channel and sharing about your life with your diagnoses please message me I would love to have anyone wanting to participate in my new podcast Chronic Heart 2 Heart.
Posting new podcasts at least once a month for now due to the documentary filmmaking that is happening.
I aim to raise awareness for rare conditions and bring about hope for others living with chronic health conditions. I live with Ehlers-Danlos syndrome, hyperPOTS, and MCAS. I want to help others share their stories Rare and complex illness needs more awareness, and people living with complex health conditions matter too.
Feel free to join me on social media
linktr.ee/villainari
มุมมอง: 22
วีดีโอ
I am exhausted and state of burn out
มุมมอง 42หลายเดือนก่อน
Please note this is not to be used as medical advice, Chronic Heart 2 Heart is a Podcast where people with complex, invisible diagnosis share their stories with the internet. It is simply a podcast of information sharing and caring This is a call to anyone in the community who has mental health diagnoses/chronic health conditions or who is considered to be disabled, if you or anyone you know wo...
Podcast about podcasting
มุมมอง 19หลายเดือนก่อน
Please note this is not to be used as medical advice, Chronic Heart 2 Heart is a Podcast where people with complex, invisible diagnosis share their stories with the internet. It is simply a podcast of information sharing and caring This is a call to anyone in the community who has mental health diagnoses/chronic health conditions or who is considered to be disabled, if you or anyone you know wo...
It is so draining to be on the phone
มุมมอง 16หลายเดือนก่อน
Please note this is not to be used as medical advice, Chronic Heart 2 Heart is a Podcast where people with complex, invisible diagnosis share their stories with the internet. It is simply a podcast of information sharing and caring This is a call to anyone in the community who has mental health diagnoses/chronic health conditions or who is considered to be disabled, if you or anyone you know wo...
Being Single and Positive Forms of Communication
มุมมอง 42หลายเดือนก่อน
Please note this is not to be used as medical advice, Chronic Heart 2 Heart is a Podcast where people with complex, invisible diagnosis share their stories with the internet. It is simply a podcast of information sharing and caring This is a call to anyone in the community who has mental health diagnoses/chronic health conditions or who is considered to be disabled, if you or anyone you know wo...
Cavernous Malformation This is In my Brain
มุมมอง 132 หลายเดือนก่อน
Please note this is not to be used as medical advice, Chronic Heart 2 Heart is a Podcast where people with complex, invisible diagnosis share their stories with the internet. It is simply a podcast of information sharing and caring This is a call to anyone in the community who has mental health diagnoses/chronic health conditions or who is considered to be disabled, if you or anyone you know wo...
HyperPOTS decided I shouldn't sleep sleepy rant
มุมมอง 292 หลายเดือนก่อน
Please note this is not to be used as medical advice, Chronic Heart 2 Heart is a Podcast where people with complex, invisible diagnosis share their stories with the internet. It is simply a podcast of information sharing and caring This is a call to anyone in the community who has mental health diagnoses/chronic health conditions or who is considered to be disabled, if you or anyone you know wo...
We all have multiple parts to our personality
มุมมอง 83 หลายเดือนก่อน
We all have multiple parts to our personality
Didn't realize asking you to be fragrance free was a big ask
มุมมอง 263 หลายเดือนก่อน
Didn't realize asking you to be fragrance free was a big ask
Life in the Bubble Documentary Film Trailer Release 2025
มุมมอง 1803 หลายเดือนก่อน
Life in the Bubble Documentary Film Trailer Release 2025
I hate MCAS and how people don't care about anything but themselves...
มุมมอง 343 หลายเดือนก่อน
I hate MCAS and how people don't care about anything but themselves...
2am Sleepy tired but not tired concerns about medication changes
มุมมอง 333 หลายเดือนก่อน
2am Sleepy tired but not tired concerns about medication changes
Find it within you The Happiness You seek
มุมมอง 145 หลายเดือนก่อน
Find it within you The Happiness You seek
I am so exhausted having to advocate myself
มุมมอง 525 หลายเดือนก่อน
I am so exhausted having to advocate myself
Chronic Heart 2 Heart Podcast Episode 8 Chris MCAS Story
มุมมอง 33ปีที่แล้ว
Chronic Heart 2 Heart Podcast Episode 8 Chris MCAS Story
Chronic Heart 2 Heart Podcast Episode 7 Fiona Mastocytosis
มุมมอง 22ปีที่แล้ว
Chronic Heart 2 Heart Podcast Episode 7 Fiona Mastocytosis
Chronic Heart 2 Heart Podcast Episode 6 Piper Interview Fibromyalgia
มุมมอง 12ปีที่แล้ว
Chronic Heart 2 Heart Podcast Episode 6 Piper Interview Fibromyalgia
FX Make Up and Conversations Trypophobia Episode #22
มุมมอง 11ปีที่แล้ว
FX Make Up and Conversations Trypophobia Episode #22
Holy smokes. I did not know this… I’ve never had allergies my whole life but these past few years I’ve been struggling with my mental health and have had crazy bad allergy attacks. 🤯
@@daisyadowen6617 ya its something my immunologist and I chatted about how they are connected. When my metal health is bad I am way more allergic reactive. Happy to share info as a patient living the MCAS.
You’re overthinking, When you have a creative mind and you don't do anything with it, it turns against you and you start creating problems, While a part of you says to yourself, “Actually, everything's fine”. Even if it's hard to hear it when you've got all that pollution in your mind and body, Try to find it anyway, You're stuck when you're in a kind of circle, But thinking about it means you're out of it, Nothing is really wrong with you or your situation, Nothing is bad, Everything is what it is, What's next? Get out of it, Put new energy into your body, Try something new, with yourself, Something you once said, “No, it's not for me”. Or something you're afraid to do,
No one could know about that, unless they have experienced it... anyways, keep it up girl, if you´re still here, you´re handling it like a pro
I know this is unrelated- but I LOVE what you did for the background, did you do that yourself?
@@shadowcat2895 thank you. It is a background I got years ago for my stream set up. I am an avid horror fan.
You got all of us minions tho 😂😂😂 miss ya 😊
@@blevenzon which I am immensely grateful for you guys mean the world to me.
The number of times I’ve explained my partner’s health condition to a doctor as their advocate and been met with a blank stare or outright disbelief. 😔
@@stephenie44 this sound incredibly frustrating. it is for sure. Very frustrating to explain something that’s going on in your life and then have people not believe you find it to be very disheartening. This is why I believe more awareness and more conversations around the topic is vital, thank you for sharing with me your experience. I hope someday that doctors and will understand more and be more supportive of their patients and their family members.
hello I have a hyperadrenergic pots and I suffer for four years. my nervous system is overexcited I breathe quickly I digest poorly and especially in a standing position my heart rises high , and walking ca gets worse. My blood pressure also rises in a standing position. I live in France and here the doctors do not know much about it however my orthostatic tachycardia and my tension are visual and the doctors recognize them . I tried a beta blocker (propanolol) but my body has very bad it my heart went down to 28 bpm. Since I refuse to take any beta blockers. A doctor found out how to calm my nervous system by prescribing me Paroxetine, which is a drug that is basic prevu for panic attacks but in my case it acts quite well on noradrenaline. Unfortunately there is still the problem of the pots and tension. I can’t walk for long because I always move around with my wheelchair in the present, as a safety net in case I am exhausted by walking. It’s psychologically very hard. As much as physically . And above all, this heart problem that is overflowing prevents me from working or doing some physical effort . I don’t know what to do with my time especially. I know that my autonomic nervous system is out of order so the pot is only a symptom. I try to drink lots of water. But what to do.... it’s sad ... good luck
Damn Ari, im sorry youre going through this hun. Im thinking about you and sending positive thoughts/energy. Keep ya head up. And Your makeup is fire as always. 🔥🔥
@@LFROSTVEVO no thank you so much. I appreciate the kindness and the support and encouragement. I hope you’re also hanging in there. Doing the best that I can for sure I definitely get a lot of headaches and have for quite some time and this cavernous malformation makes sense.
You cannot police the world dear, stay at home if you system is so weak..maybe see an allergist to see what food you are allergic to then you can strengthen your body
Is that make-up, or do you need help?
@@jessierhinelander9894 I do fx make up and stream art, games etc on twitch. Halloween month I do spooky looks everyday.
Wtf happened to u where r u
@@lim0n333 it is my set up for stream LOL. I am a horror content creator. I do fx make up and stream horror content, its always Halloween on my channel.
first
True. We eat shit in this USofA
❤❤❤❤❤❤
Hi Ari
@@blevenzon 👋 how are you!?
great
I too had thyroid cancer, at age 25..."the good kind"...and ha e not been the same since. Fast forward 20 years and now I have abnormal tilt table results and my lab work shows elevated norepinephrine and others. My primary care doc thinks EDS is likely (but not diagnosed) as well as Sjogrens (but not diagnosed). No focus where I am in WA (hard to believe they have all gone to cash only) so I am being sent to California. I feel so alone in all of this. I am also being sent for evaluation of a possible CSF Leak...the hits just keep coming.
I can smell the disappointment through my screen. Gtfo and find a real job.
It happens because healthcare is broken. No just in America but everywhere.
Hi, just stumbled onto your channel. I’m glad I did. I’m sorry you’re struggling. Advocating for yourself should not be so frustrating but I know that it is. 😢
It is for sure frustrating and exhausting at times. Welcome to my little corner of youtube. The struggle at times makes me feel alone but knowing that others feel similar helps me to keep going.
I know I'm not anyone from the medical system, but as someone who can relate to your experience in some ways, I just wanted to say that I see you and hear you. Thank you for saying the things that need to be said, and may you encounter the people that you need to see you and hear you most in a timely manner. Take care 🫂
This is very kind of you, thank you so much for this. I hope to be seen and heard and help others to be seen and heard along the way. Thank you for the kindness and the supportive words.
I feel guilty I haven’t came to your streams for this exact reason, but I’ve been pretty sick
Do not feel guilty this is about people making promises to hang out. I understand you are sick and appreciate what you do when you can. I am here for you! You matter, your health matters.
Thank Allah i dont have thee extreme condition with blood pressure and heart rate, mine normally go up when standing up or when i climb a stair, usually it gets normal within 2 to 4 minutes, but i have migranes, indigestion, chest pain for over an year now, and 2 months back i was having trouble breathing when walking, also had fatigue and loss of apatite. also 2 weeks ago was having trouble swallowing saliva, saw an ent doctor, he did a barium swallow x ray and said there is no issue. I have symptoms of heart faliure, throat, and lungs cancer. Last year saw a cardiologist and he did blood and treadmill test and everything was fine, he told me clearly he has no idea why its happening. He gave me Ciplar La 40mg. This medicine works, it controls tachycardia by 60 to 70 percent.
I am happy to do here that medication works for you. I am not sure if it is available where I am at. Have the doctors helped you get relief from the other symptoms you are having?
I have this too and am untreated. It usually is brought on by viral illness. Then will decrease in severity after a few months. I just got COVID and am dealing with severe symptoms. I have constant panic attacks, SOB, can’t sleep (sleep apnea now, I think), blurry/grainy vision, etc.
I am sorry to hear you are untreated. I am not sure why youtube did not notify me of your comment. I hope you have found some relief for your symptoms.
Have you lost a lot of weight?
@@juliaarambula3153 no. I am looking into EDS as a possible cause. I think eagle syndrome and TOS might be what I’m currently dealing with - which brought about the symptoms
@@juliaarambula3153 I go through periods where I lose a lot of weight, but the weight is mostly swelling, so I swell and my face looks bigger than it is and when the swelling goes down I look thin again. I can gain from 10-20 pounds while I am in a swelling phase. I have been weighed by the doctors in two weeks and have gone up or down 10-20 pounds due to swelling.
Compression calf sleeves and saline infusions can help. The Alpha-2 agonists (Clonidine or Guanfacine) specifically target hyperadrenergic POTS by signaling the body to not dump so much norepinephrine and adrenaline into circulation. They've been wonderful for me. I have hypermobile Ehlers Danlos syndrome. I also have digestive motility issues, which have been eliminated by Mestinon (Pyridostigmine) - plus this medication can help a bit at mitigating POTS symptoms.
Nice video really helpt alot!
I am happy to hear this, your comment truly made my day!
As an introvert I hate my phone going off, it's permanently on silent, people hate me for not getting back to them quick enough, which bothers me but i also find things like that draining, glad to hear I'm not the only one!
I find it draining also. Responding when I can is what I do also. If it bothers others that is on them, I am introverted also. Having one’s space and peace of mind is important. I am glad we can relate on keeping the sounds off. 😊
🤗
My bp as of yet only spikes sometimes but spikes drastically. It can last minutes hours or days, but in between bp low 80s/60s so idl what can help me. I think a bp medicaton will make me bottom out. Its hard to live like this i can not evem go 5 min away from my house as a passenger in a car without spiking hypertensive 😢
Dr Dianna Driscoll has a great video she made years ago on this exact diagnosis. Highly recommend for anyone with this condition.
I have read the Driscoll theory. However, I didn't know there was a video do you have the link?
Dr. Diana Driscoll is who recommended Mestinon (Pyridostigmine) to treat POTS by stimulating the vagus nerve. She made an OTC supplement version of this medication, called Parasym Plus. I've had a lot of success on the Mestinon, although I primarily take it to treat my digestive motility issues.
You’ve met someone that has it, I have it
That you do and I hope that you are hanging in to the best of your abilities!
Because no one cares. People live their lives as long as they’re not affected, chronically ill people are ok as long as we are out of sight out of mind. On the flip side people will ask how you are just as a checkmark. Again I’m well aware you can’t expect others to be like I am and I can’t expect them to care. But it sucks nonetheless.
I think there are people that care and people can learn to care. For sure sucks to be ignored or forgotten but I have hope that there can be change.
Hi❤
Hello 👋
Were these symptoms all the time or just occasionally?
I wouldn’t say occasionally, it really depends on a lot of things. In a flare it can be often. I experience symptoms regularly but do what I can to cope with them as they arise.
Thank you for your videos. It is so hard to find information on HyperPOTS (and even harder to find a good doctor). I’ve been struggling for years.
Thanks for sharing and I’m so sorry for what you’re going through. I am going through some stuff at the moment and can relate to a lot of what you talked about ❤
I am sorry to hear you are also going through hardships also. I hope things improve for you. I appreciate the kindness. Glad we can relate it helps me heard and seen and understood.
Life is so unfair at times. Sending lots of love ❤️
It can be for sure, finding things I can still do has helped me a lot@@angelayoung8770
This is always very interesting to listen to. Thank you for sharing your journey. Wishing you the very best for the future. <3
Thank you so much. Happy to share my journey of the things happening with rare and complex illnesses. I will continue to share. I wish you the best with the future also.
I thought Healthcare might be higher on the list
Healthcare in Canada means waiting 2-3 years to see a specialist, our healthcare is not what it appears to be.
Bloody lunatics
Get a life !
Are you mentally ill?
❤