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Пікірлер
@kylereese9713 Ай бұрын
"May the force be with you"🙌💖😘
@Rushu770 Ай бұрын
great
@andreaf5432 Ай бұрын
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.
@TolisTolis-ho7zm Ай бұрын
I can smell the disappointment through my screen. Gtfo and find a real job.
@Luizgustavo-qu7nw Ай бұрын
Deus me livre 😮😮
@pwesiti Ай бұрын
It happens because healthcare is broken. No just in America but everywhere.
@pwesiti Ай бұрын
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. 😢
@Villainari_ Ай бұрын
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.
@TheCloverAffiliate12 Ай бұрын
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 🫂
@Villainari_ Ай бұрын
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.
@blevenzon 2 ай бұрын
I feel guilty I haven’t came to your streams for this exact reason, but I’ve been pretty sick
@Villainari_ Ай бұрын
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.
@dantedevilboy9817 2 ай бұрын
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.
@Villainari_ 2 ай бұрын
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?
@lukemeola 3 ай бұрын
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.
@Villainari_ 2 ай бұрын
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.
@juliaarambula3153 Ай бұрын
Have you lost a lot of weight?
@lukemeola Ай бұрын
@@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
@Villainari_ 9 күн бұрын
@@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.
@jamesgangmember 3 ай бұрын
😍 beautiful
@Dulcimerist 3 ай бұрын
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.
@LifeBloom12 4 ай бұрын
Nice video really helpt alot!
@Villainari_ 3 ай бұрын
I am happy to hear this, your comment truly made my day!
@nataliehaylock3290 4 ай бұрын
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!
@Villainari_ 4 ай бұрын
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. 😊
@blevenzon 5 ай бұрын
🤗
@nektariosandmagdalena4985 5 ай бұрын
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 😢
@peterfranks7619 6 ай бұрын
Dr Dianna Driscoll has a great video she made years ago on this exact diagnosis. Highly recommend for anyone with this condition.
@Villainari_ 6 ай бұрын
I have read the Driscoll theory. However, I didn't know there was a video do you have the link?
@Dulcimerist 3 ай бұрын
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.
@blevenzon 6 ай бұрын
You’ve met someone that has it, I have it
@Villainari_ 6 ай бұрын
That you do and I hope that you are hanging in to the best of your abilities!
@blevenzon 6 ай бұрын
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.
@Villainari_ 6 ай бұрын
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.
@dapokeguy2994 6 ай бұрын
Hi❤
@Villainari_ 6 ай бұрын
Hello 👋
@scarpru 6 ай бұрын
Were these symptoms all the time or just occasionally?
@Villainari_ 6 ай бұрын
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.
@houndsathome8464 6 ай бұрын
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.
@angelayoung8770 7 ай бұрын
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 ❤
@Villainari_ 6 ай бұрын
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.
@angelayoung8770 6 ай бұрын
Life is so unfair at times. Sending lots of love ❤️
@Villainari_ 6 ай бұрын
It can be for sure, finding things I can still do has helped me a lot@@angelayoung8770
@NERD-ROBOT 7 ай бұрын
I get that. Dec is difficult for me as well. Lost my folks in the 90's, estranged from my sister and my friends are in BC. It's just me.
@Villainari_ 7 ай бұрын
I am sorry to hear of the loss, it sounds like a tough situation. Thank you for sharing with me. Holidays can be hard when we are alone, but doing something for ourselves around this time of year I think is vital for showing ourselves self care. I game most of the holidays because I like my online community and I like gaming. I hope there is something you can do for you this holiday season, because you are worthy of good things.
@NERD-ROBOT 7 ай бұрын
@@Villainari_Oh yes, I have my rituals...junk food and some drinks Christmas eve and food on Christmas, and watching LotR's. :) I do have a game of Twilight Imperium set for New Years day.
@pipermarau 7 ай бұрын
i don't do anything for holidays because of celiac so being online is a new thing. i hope you like it and that it helps you enjoy this time of year.
@Villainari_ 7 ай бұрын
I have spent many years online and do streams for Holidays because I know I am not the only one alone this time of year. I am glad you are online and that we met through the internet! I appreciate your friendship.
@pipermarau 7 ай бұрын
you're awesome @@Villainari_
@jmrohcreations 8 ай бұрын
This is always very interesting to listen to. Thank you for sharing your journey. Wishing you the very best for the future. <3
@Villainari_ 7 ай бұрын
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.
@adrian19831983 8 ай бұрын
I thought Healthcare might be higher on the list
@Villainari_ 8 ай бұрын
Healthcare in Canada means waiting 2-3 years to see a specialist, our healthcare is not what it appears to be.
@annfuckantifa5973 8 ай бұрын
Bloody lunatics
@ogmc4152 8 ай бұрын
Get a life !
@dryaldibread2327 8 ай бұрын
Are you mentally ill?
@blevenzon 8 ай бұрын
❤
@darkmedina1510 8 ай бұрын
Congratulations...epic🤘😈😈😈🖤
@Villainari_ 8 ай бұрын
Thank you so much! Was fun to do!
@NERD-ROBOT 8 ай бұрын
Hope it went well!!!
@Villainari_ 8 ай бұрын
Thank you hoping to do an update video now!
@blevenzon 8 ай бұрын
Oh I remembered exactly how mine began too 😅
@Villainari_ 8 ай бұрын
Would love to interview you if you want to share your story, if not no pressure!
@blevenzon 8 ай бұрын
@@Villainari_ would be nice.
@Villainari_ 8 ай бұрын
@@blevenzon will send you a message and we can set up a time?
@blevenzon 8 ай бұрын
@@Villainari_ sounds good
@blevenzon 8 ай бұрын
❤❤ you’re awesome
@jmrohcreations 8 ай бұрын
Wishing you the very best!!!
@blevenzon 8 ай бұрын
Sorry missed this, covid got the better of me ❤❤❤
@mrsmokpiano 8 ай бұрын
Very good 😊
@Villainari_ 8 ай бұрын
Thank you so much!
@LordKojay 8 ай бұрын
lookin forward to seein you soon. lots of love & support always
@NERD-ROBOT 8 ай бұрын
We have had a conversation or two...you can always reach out and chat! Be curious to hear an update on your project. Also, what you're going through is brutal. I consider myself lucky and I admire your strength! It's very commendable! #f*ukcancer
@Villainari_ 8 ай бұрын
Awe thank you so much! I appreciate this greatly! My Documentary Project? Thank you for the kind words and the admiration. I agree cancer is a terrible thing and it should go away.
@pipermarau 8 ай бұрын
i help with cat pics =^.^=
@pipermarau 8 ай бұрын
thank you for talking about your experiences, fiona. big hugs.
@TheCloverAffiliate12 9 ай бұрын
I've been really feeling the appointment burnout this year-not only with my own appointments, but with others. All of us have some of the same chronic conditions that you do. I'm now trying very hard to strategize in hopes to prevent or at least lessen the effects. Hoping for all the best with your new doctor if that hasn't come to pass yet, and hope you get to do some makeup or video games before and after to hopefully cope with any possible re-traumatizing. Thanks for sharing, and take care 🫂
@Villainari_ 9 ай бұрын
I hope everyone is able to take a week off of appointments if possible and if not hopefully have a few days without appointments. Thank you. I appreciate it. Happy to share. It is a thing that happens to many of us for sure.
@TheCloverAffiliate12 9 ай бұрын
@@Villainari_ Thank you so much. We have, thankfully, before some major ones each of us have coming up, and we're trying to keep them more spread out where possible. Of course! And definitely agree-I don't even hear many chronically ill/disabled content creators talk about appointment burnout, so I think I've come to the right place.
@Villainari_ 9 ай бұрын
@@TheCloverAffiliate12 I hope you are able to do self care for you. I am happy to share my experiences as I have burnt out many times due to appointment burn out. Happy to have you here.
@carolharper268 9 ай бұрын
I also have fibromyalgia and I do exactly the same with my words. Also, I’m being diagnosed at the moment and you sound like me 🤗
@Villainari_ 9 ай бұрын
I hope the diagnosis process helps you to find some resources and relief from symptoms. I get tongue tied so much LOL
@carolharper268 9 ай бұрын
@@Villainari_ I have to write a list of what I want to know otherwise I’ll forget 🤗
@Villainari_ 9 ай бұрын
I do the same for all my appointments or I forget things@@carolharper268
@blevenzon 9 ай бұрын
🤗
@blevenzon 9 ай бұрын
Awesome as always
@Villainari_ 9 ай бұрын
Awe thanks! I enjoyed doing this one, everyone made me laugh at the end LOL
@blevenzon 9 ай бұрын
Sorry had to drop early
@Villainari_ 9 ай бұрын
No worries about that ever, I understand and appreciate you coming back when you have time. Never pressure to hang out in streams. It is always lovely to see you there, I support you in taking care of you!
@Buy_YouTube_Views_Gain_Fame306 10 ай бұрын
I love how real and true you are! Loved this vlog!
@Villainari_ 10 ай бұрын
Thank you so much!
@pipermarau 10 ай бұрын
thank youu!
@Villainari_ 10 ай бұрын
Of course, it is always lovely to chat with you! I appreciate your kindness and your openness