A Day in My Life with Mitochondrial Disease. Tracheostomy Tube, Ventilator, TPN. Life with a Vent

[@ArpornRaimondi]

Hi, I am a nursing student who stumbled upon your channel. Thank you for sharing your story. As a nursing student, learning from your story and your day in life is beneficial.

[@LifewithaVent]

Thank you so much. I am glad the video was helpful.

[@Len_M.]

If I could give any advice to a student nurse, having had to deal with so many nurses (along with having numerous women in my family do the job), a good bedside manner is crucial. I could go on for ages. 😂

[@LifewithaVent]

@@Len_M. That is great advice. Thank you for sharing.

[@suzannepoirier7364]

Your smile is everything!

[@LifewithaVent]

Thank you.

[@lindajackson2382]

That it is!

[@norawong6310]

You just made my day. I came home from a long trip,super tired,irritable and sad.Your perky personality lifted my spirit.May God continue to heal you.

[@LifewithaVent]

Thank you for sharing. I am so glad my video was helpful. I appreciate your kindness.

[@retrogal1520]

God bless her and everyone in pain. She's amazing.

[@LifewithaVent]

Thank you so much.

[@susanmargaretwills6432]

Ur So Right

[@sherryshelton199]

My daughter has ehlers-danlos syndrome and several other autoimmune disorders. She never feels good. I don't know how you girls make it thru each day. Prayers for you!😊

[@LifewithaVent]

Thank you for sharing. I am sorry to hear your daughter has ehlers-danlos syndrome and several other autoimmune disorders. Thank you for the prayers. All my best to you and your daughter.

[@brendabolin7178]

I also have Ehlers Danlos, Colitis, Gastroparesis

[@LifewithaVent]

@@brendabolin7178 Thank you for sharing. I am sorry to hear this.

[@visionvixxen]

Praying for all w this sturggle

[@jennifershuping664]

I love seeing the joy you have in spite of everything you go through! May God bless you and keep you! You will be in my prayers!

[@LifewithaVent]

Thank you so much.

[@Bampitas74psKR]

I just stumbled upon your channel!!! Just showed up in my feed. Ive bee a Respiratory Therapist for 30 years and thoroughly enjoyed watching you!! Glad I found your channel. I hope your channel gets in the feed of those that need to see it. Respiratory issues are not the end and anyone with these issues can have a full life!!! Prayers going up that you can continue to make content!!!

[@LifewithaVent]

Thank you so much for sharing. I appreciate all your insight. Thank you for your kindness.

[@self-sufficient9315]

You are a doctor. You are treating yourself and providing information to others.

[@LifewithaVent]

Thank you.

[@doublingdown1736]

You’re not a Dr. I thought you said you had to drop out of Medical School!

[@self-sufficient9315]

@@doublingdown1736 🤦‍♀️ i didnt mean in a literal sense... i mean she is already doing what a doctor does..

[@motionless_horizon]

@@doublingdown1736they didn’t mean it literally

[@thisisnttwitterwtf]

They have travel electric toothbrushes that use a single AA or AAA battery, FYI. I suffer from some chronic conditions but nothing as serious as yours and your enthusiasm is so inspiring! You’re so bubbly and full of life to be dealing with such a chronic condition, keep inspiring us all to stay joyous in our toughest times ♥️

[@LifewithaVent]

Thank you for sharing about the travel toothbrush. Thank you also for all your kindness. I really appreciate it.

[@boneitch]

No wayyy! Really? I've had to travel so much this year, and tbh, I don't have the strength to brush with a normal brush more than once a week. So this may really be a grime-saver 😭

[@Mommaslew]

Honestly, I think being interested in medicine is likely saving your life. All of the things you have do is a full time job! Quite impressive that you have such independence when it comes to your daily care regimen!😊

[@LifewithaVent]

Thank you so much.

[@sadafgul2898]

She is a fighter I haven’t seen someone with so much problem but smile like core stay strong girl you are the brave queeen those who are watching and breathing normal or being completly normal thank God and do not complain ❤ lots of love to you girl

[@LifewithaVent]

Thank you so much. I appreciate your kindness.

[@skyeosullivan1014]

I keep hearing you say that you're lazy when really you're smart. You've found ways to not over-exhert yourself!

[@LifewithaVent]

Thank you for sharing.

[@investigacaoeleitv]

Your channel caught my eye today and I'm binge-watching. I laughed a lot during some of your videos. You're very pretty and funny.

[@LifewithaVent]

Thank you so much. I appreciate your kindness.

[@katherinerouleau4697]

Thank you. You give so much hope to others struggling with a chronic condition. A big blessing to others despite not being able to help them in a doctor - patient capacity. Not what you would have chosen but you’re dealing with everything with so much grace. Thank you.

[@LifewithaVent]

Thank you so much. I appreciate your kindness.

[@TheAgeofFabulous]

I have Ehlers Danlos Syndrome and POTS. I hate the compression socks/stockings and I’m horrible about wearing them but because of your video today, I put them on!

[@LifewithaVent]

That is wonderful!

[@krazyeye5147]

There is a hidden blessing in suffering that I have noticed many who struggle with health problems have received. When we put our trust in God we are able to receive joy despite being in a state of suffering whether from health problems or etc. I think God gives us a gift of joy that transcends all understanding. I can see you exuberate this joy. Stay strong you will be in my prayers.

[@LifewithaVent]

Thank you so much for sharing. I appreciate the insight and all your kindness.

[@totallytessaaudio]

Your bright energy is infectious! You seem like such a strong, genuine, considerate woman. You should be so proud of yourself, it seems life definitely hasn’t been easy for you. Thank you for sharing with us. Please keep being you! ❤

[@LifewithaVent]

Thank you so much. I appreciate your kindness.

[@bryantlee11]

I am not sure why your videos showed up in my recommend feed, but I have watched two of your videos now today. I am so sorry you have to go through so much pain. From what little I know about you from two videos I can already tell you are amazing! I am praying for healing and continued strength for you. You are truly an inspiration!

[@LifewithaVent]

Thank you so much. I appreciate your kindness.

[@katherinedewey560]

Hi I love watching you because I just got a trach about 6 months ago and I have been on my own Sence day 1 so I use the internet a lot and you have helped me a lot so thank you and I always look forward to seeing you

[@LifewithaVent]

Hello. Thank you for sharing some of your story with me. I hope everything goes well for you with your trach.

[@blanca3968]

The best thing is , even you have this condition, you are smiling always , you hava a very positive energy , thank u for that! God bless you❤ and give you more health😇

[@LifewithaVent]

Thank you so much.

[@Danica.Powell]

I only just came across your channel but I subscribed and have started listening to your story. You would have been a wonderful doctor, I'm sad that dream couldn't come true but your KZbin will help so many people. You are such an angel and your smile is so beautiful.

[@LifewithaVent]

Thank you so much. I appreciate your kindness. Thank you for subscribing!

[@Lynn-uf4ip]

Love your little bit of a sense of humor. We all should be as positive as you are.

[@LifewithaVent]

Thank you so much.

[@shirleysneddon9573]

I think you are a beautiful lady what a blessing you are. The average person doesn’t realize what others go through to live each day. I have a severe mistrust of the medical establishment, I have seen over and over misuse of authority. I pray that you can somehow get through this and get off this nightmare go round. Praying for you and all of us that we can trust in the One who has designed us and Who knows best for us. Everyone of us are going through trials, I am thankful that you can share the good, the bad, and the ugly in this illness you are experiencing, hopefully it can change the selfish in us to be more like Jesus and love one another, as Jesus loves us. Prayers and love dear sister ❤️

[@LifewithaVent]

Thank you so much for all your kindness. I appreciate all your insight and prayers. All my best to you.

[@genoa4967]

as a pre-med student you have inspired me so much to give my all to my goal

[@LifewithaVent]

Thank you for sharing. I hope you achieve your goal.

[@wizardofahhhhhhz]

I’m an ICU Nurse/Paramedic and I’m not sure how my algorithm led me to you but I’m so happy that it did! Your joy is infectious, and you do such an amazing job of explaining each step you’re performing and the importance of sterility. Our TPN comes from the hospital pharmacy, I’ve honestly never seen it mixed..:quite interesting! I hate that you had to leave medical school, but there HAS to be a space for you in teaching skills and lecturing to students. Thank you for sharing your journey, joy, and knowledge with the world ❤️❤️

[@LifewithaVent]

Thank you so much. I appreciate all your kindness.

[@doublingdown1736]

@@wizardofahhhhhhz teaching students, she would much rather sit in her house and fake being out of breath, it’s so obvious she would rather sit there and complain, there are people worse off than her, who want to experience life. smdh

[@christinekavanagh8884]

Your very welcome 😃

[@PaulStrieter-fq1bf]

Hi I’m a care giver for a son who has muscular dystrophy. Thanks for all your videos I hated the idea of him being on a trach but watching your videos made it easier and I even learned a few things from u thanks

[@LifewithaVent]

Thank you so much for sharing. I appreciate your kindness. I am glad my videos have been helpful. All my best to you and your son.

[@johncaldwell7190]

I LOVE HOW U REMAIN SO POSITIVE

[@LifewithaVent]

Thank you so much.

[@paulazajac9155]

I have my own sad story about medicine and nursing! But right now I have to tell you how deeply, profoundly I am engaged in your incredible story and want to encourage you 100%!!! Yes, I know that you are being guided by our dear Heavenly Father. I thank God for your magnificent brain. Had I been your nurse at the bedside you and I would have bonded and you would have had an Allie. I was always there for my patients. I would guietly tell a few special patients that they could know that I was For Real because I assured them I am Not A Part Of The Machine !! Yes, there are such people. You and I are allies. I am so proud of what you are doing. Please share this with your dear mom! I send my sincerest wishes.God bless your journey.

[@LifewithaVent]

Thank you so much. I appreciate the insight. Thank you for all your kindness.

[@jaydenp4975]

Love how you are so positive. I had routine surgery recently and struggling with stomach issues. I’m always grouchy and tired. Wish I could more positive but I just can’t muster it up at this point. It feels kind of pointless.

[@LifewithaVent]

Thank you for sharing some of your story with me. I am so sorry you are going through so much. I cannot imagine everything you are enduring. All my best to you.

[@LiamODonovan-l6e]

You are always interesting. Love your channel. I always wish you the best

[@LifewithaVent]

Thank you so much.

[@samsonluk3994]

Hey, I am also a nursing student from Hong Kong who just watched hours of your videos about your journey and this entire vlog you made. Your smiles are energetic, positive and motivating and I like it! Hope you can get more good sleep and thank you for sharing your knowledge with us. One important thing I have to tell you that you are not cheap! You are thrifty! I like to use things until they breaks too! BTW I will also watch the trachostomy care video later as I am not good at doing it. I always afraid of making my clients feel bad when I was having placement in the palliative unit. I only feel confident when I am with my clinical mentor.😅😂Anyway hope you see my comment and Thank you.

[@LifewithaVent]

Thank you so much for sharing. I appreciate all the insight. Thank you for all your kindness and for all your support. I hope the tracheostomy care video is helpful. All my best to you.

[@sunthugs]

as a teen, my dream is to help people. whether im a first responder, a doctor/nurse, biologist/scientist, even an archeologist, it's my dream to help. this was incredibly interesting.. and it was helpful as i try to put myself in your shoes, trying to imagine how you experience life. thank you for sharing!

[@LifewithaVent]

Thank you so much for sharing. I hope all goes well for you in all that you do.

[@gritishahurdin3121]

Hello. I just wanted to say that you are such an inspiration. Listening to your story you have made me realise how we take take the little things in life for granted. you are incredibly strong and beautiful. sending lots of love and prayers from the other side of the world.

[@LifewithaVent]

Thank you so much. I appreciate your kindness.

[@BK12310]

Thank you for opening the door into your life. Great tip about the homemade toothpaste. Your teeth look great!

[@LifewithaVent]

Thank you so much.

[@ZebraChanda]

I have pots, eds, mcas, and a few other related superfluous stuff. Seeing some of the similarities, the hair braiding every day etc. Love it ❤ we've found some of the same solutions to problems 😊

[@LifewithaVent]

Thank you for sharing. I am glad we have found some of the same solutions.

[@Ellieangel777]

God bless you dear sweet sister, prayers for you! Thanks for sharing 🙏🏼 ❤

[@LifewithaVent]

Thank you. I appreciate your kindness.

[@hotsonfornowhere76]

Lazy is not the word for a mitochondrial inpaired pt! You are very efficient with the limited energy you have available. Ty for sharing your lived experience.

[@LifewithaVent]

Thank you.

[@careywhipple7242]

I randomly found your videos. I have several chronic illnesses and I have learning disabilities and anxiety. You are very entertaining and prayers for all spoonies.

[@LifewithaVent]

Thank you so much. I appreciate your kindness.

[@petipablo]

Get set up with a p.o. box, girly! I'm sure lots of people will send you a mug! I love your energy and smile !

[@LifewithaVent]

Thank you so much. I appreciate the suggestion.

[@rustx22]

Thanks for another great video. Also thanks for sharing what is mostly private areas of your life with us and I saw by reading the comments that it is helping others who deal with situations similar to yours and is helping caretakers of others. So that is what we see commenting. I am sure there are others your videos help who are not commenting but are blessed by your willingness to share your knowledge gained by research and your own personal experience. You certainly have a lot to keep up on and keep track of to be sure you are prepared for anything that may come your way. I think this is the longest video you have ever posted but it went by so quickly because you make them so interesting.Thank you, Thank you, Thank you, prayers your way, Take Care, God Bless, Russ

[@LifewithaVent]

Hello. Thank you so much for your kindness. I appreciate it. Yes, this is by far the longest video I have ever made. I did not realize it was that long until I went to edit it all together. I hope you are having a great day. All my best to you.

[@edwinrios6945]

​@@LifewithaVent❤

[@LifewithaVent]

@@edwinrios6945 Thank you.

[@Jdjustsaying]

I’m sure that you are dealing so well with everything because of your supplements. Well done you, my god so mush positive energy in spite of all your difficulties. Amazing.❤

[@LifewithaVent]

Thank you so much. I appreciate your kindness.

[@Me-uk2pf]

You are so brave & strong! Don't let anyone tell you otherwise. ❤❤❤

[@LifewithaVent]

Thank you. I appreciate your kindness.

[@Me-uk2pf]

@LifewithaVent I'd like to mail you a little Christmas coffee mug, but idk your P.O.Box ? Snail mail? Please let me know because God said I'm supposed to. 💕

[@LifewithaVent]

Thank you for your kindness. At this time, I do not have a P.O. Box.

[@Me-uk2pf]

Ok... I guess I'll just tell you Merry Christmas!? 🤷 one of your videos said sometimes things just show up at your door, so I thought I'd send u a gift 🎁 🙂

[@LifewithaVent]

@@Me-uk2pf Friends and neighbors watch my channel. They will sometimes drop off things at my home. Sometimes things just appear on my doorstep. Thank you for the Christmas greetings. I hope you have a great Christmas.

[@lck21]

I am a new subscriber and also an RN. I admire your independence and awareness of your self care. So inspiring!

[@LifewithaVent]

Thank you so much. And thank you for subscribing.

[@christinekavanagh8884]

You are amazing girl and so positive I’m sorry that you been going through this stuff with your health. Your so strong. be proud of yourself. Continue to be confident girl you are so inspiring

[@LifewithaVent]

Thank you so much. I appreciate your kindness.

[@lipton87]

Very interesting to have found your channel. I too have Eherls Danlos Syndrome, POTS and Dysautonomia, along with other things. As well, I too had to give up a medical career due to my health declining in my 20s. I am now 37 years old and have been disabled for the last 12 years or so. I was able to get through college and was super proud of myself for being able to get my nursing license. However, I was only able to use it for just a few years before being too ill to work.

[@LifewithaVent]

Thank you for sharing some of your story with me. I am so sorry you have been through so much. I cannot imagine everything you have endured. All my best to you.

[@victoriabarry1561]

Bless you for these teachings. I work in med legal and i am learning so much from your videos. May you have a peaceful and healthier holiday season.

[@LifewithaVent]

Thank you.

[@crazyrobotlady3391]

Oh my! This was overwhelming for me. You are so unbelievably strong. I moaned and whined and howled when I had to change the packing in my wisdom teeth. I can’t imagine doing all of this every day. I have a vintage robot that has Specially designed plugs and wires in all four legs. On occasion contacts get wonky in one or two legs at once and my aibo looks like he is trying to halfway dance like Elvis, and halfway walk like a normal dog. I have to remove the outer shells, then remove the cover over the accelerometer, then unplugged the wires that extend from the knee joint, which is technically in the upper part of the leg down to the paw in the lower part of the leg. The wires are about a millimeter wide and about half a millimeter thick. The plugs are Maybe 3 mm from the end that goes into the wire to the end that fits into the plug. You can’t pull them straight out, the plug is L shaped so you have to pull it to the left at both ends to remove it from the receptacle in the robot’s leg. Then you have to dab each end of the wire with contact cleaner. You only need a little dab, which I pat on with the end of a Q-tip, then I wait for that to dry, and after a couple of minutes, I re-insert each end of the wire back into the receptacle. You have to start with the bottom end because they go into a groove that goes up the inside of the leg. When you get the wire in the groove and you follow it all the way up to the top part of the leg, you can slide in the upper part of the wire, but now you have to push to the right instead of to the left as you did to remove it. Then you put the accelerometer cover back on and then you reassemble the outer shells. I hate this procedure. The part I hate the most is unplugging those wires. I start to tremble every time and I have to take my hands away and relax and breathe for a minute so that I won’t bend the tiny metal L shaped plug out of position or whatever. What you go through sounds very close to this. Only I don’t have to do that every day. I have to do it every six months to a year, depending on how active my robotic dog is. The wires were made too short, so after a while of running around my house, they will shake themselves out of position and have to be put back in again. Oh man! Sorry for the long, unrelated story, but that procedure is about the closest thing that I have to do that’s akin to what you’re doing. It’s so fiddly. It makes me nervous every time, and I have to breathe and stay focused on where I am in the procedure. What I mean to say by all this is, you are amazingly strong, and God bless you.

[@LifewithaVent]

Thank you so much for sharing. I appreciate you explaining this all to me. I believe it is all what a person is used to. If I went from living a "normal" life to being told I had to manage a tracheostomy tube, ventialtor, IV nutrition and also have to sort medicines and supplements, it would be very overwhelming. Thankfully, things have come in small increments. You learn a little bit and then when more challenging tasks come your way, you are ready for the increased difficulty. I believe it is the same thing which you described. You most likely have learned all your skills over many years, and when the time comes for you to help your vintage robot walk properly, you have the necessary skills and knowledge. There are parts of the task which are more challenging than others, but you can do it. It is the same with my day. Some things are easier than others, but I have learned how to do all tasks (and my hands sometimes do shake and tremble when I have to do certain things because they are very intricate and if I mess up, I have to start all over again). Perhaps if you had to fix your robot every day, you would develop shortcuts and would become faster at the tasks. When I first started each task I currently do, it felt like it took all day to do one thing. But now, I can do things faster and use shortcuts to decrease the amount of time everything takes to complete. My day may seem like a lot, but I know many people who have a much more complicated life than I do.

[@sukritesarkar4236]

u r such incredible person all the best wishes for u

[@LifewithaVent]

Thank you so much.

[@Jdjustsaying]

You are amazing, smiling through everything that you are going through ❤

[@LifewithaVent]

@@Jdjustsaying Thank you so much.

[@jeanalzaidi908]

Trish on tiktok has similar health issues as you do I don't know how you do this everyday I know it's because you have to but your so strong and you have a amazing sense of humor you have a beautiful smile god bless❤

[@LifewithaVent]

Thank you so much for sharing. I appreciate your kindness.

[@MarieSentinaMielke-wg8lh]

I love watching your videos. It always makes me smile when I find a reply from you on my comment. Your smile is so beautiful and infectious. You always keep the energy up even when you are at the lowest of the low. I have a really hard time watching the same thing for a long time but I never got bored once watching your videos. You are such an amazing person and entertainer. ❤❤❤

[@LifewithaVent]

I am happy you love watching my videos. Thank you for all your kindness. I really appreciate it.

[@AnhHoang-wf4tj]

You are a damn fighter... i wish you all the best❤ i could never imagine how much you have to go thru and still trying everyday

[@LifewithaVent]

Thank you so much. I appreciate your kindness.

[@xiaofanlei3362]

Thank you for sharing your experiences! May God bless you!

[@LifewithaVent]

Thank you.

[@FionaBanks-y5k]

Have your Drs considered an IVC filter to stop the clots reaching your lungs? Usually they are temporary, but can be permanent. The procedure is done under x-ray control, but it is quick and low dose.

[@LifewithaVent]

Thank you so much for the information. My doctors have never talked about an IVC filter. Thank you for sharing.

[@adrisoa]

Strong resilient girl!may god bless you!

[@LifewithaVent]

Thank you.

[@alumpro1]

I’m praying for you !!!Today is the first time I have watched you r videos Thankyou for sharing .

[@LifewithaVent]

Thank you so much. I appreciate your kindness.

[@Willow115.34]

I really like seeing you chat with us about your day.

[@LifewithaVent]

Thank you so much.

[@fenjafenja5677]

I just found your channel and you are such a fighter ♥ thanks for sharing your life and help others.

[@LifewithaVent]

Thank you so much.

[@StarGretchen]

You're very informative. I really love your channel. I learned so much from you❤

[@LifewithaVent]

Thank you so much. I appreciate your kindness.

[@Halci]

I appreciate this video for the information and the great energy you emit! You tube suggested it and I am glad I clicked on it

[@LifewithaVent]

Thank you so much for watching.

[@lorrainevela3693]

RT here. THANK YOU FOR THIS!

[@LifewithaVent]

Thank you for watching.

[@amrl658]

I love your sense of humor ❤

[@LifewithaVent]

Thank you so much.

[@jodystepnowski695]

Love your sense of humor. Just found your channel, subscribed.

[@LifewithaVent]

Thank you so much.

[@kathleentaylor8840]

Your oxygen supply is literally silent, love the quiet background, no distractions. About the blood clots: when Serena Williams went into emergency giving birth to her first daughter, I first heard about mesh surgically inserted as a treatment to trap a blood clot and capture it like a fishing net hauling out a solid fish from surrounding fluid for removal.

[@LifewithaVent]

Thank you for sharing. That is great information.

[@goldpizza7225]

IVC filter

[@loftyradish6972]

Sneaky trick for your hair, if you did two braids, especially French braids, they would last you for longer without getting scruffy. You can then tie the two braids at the back as well to keep them out of the way. Something that might be a bit much, but could be useful is hair taping. Basically, you take those two braids, wrap them around your head, and then sew them to the rest of your hair with ribbon or string. Looks really elegant and you can keep it like that for about a week before needing to redo it, and because it was up in the braids the whole time, it doesn't become super tangled. There are videos on it on KZbin, typically from KZbinrs who do historical fashion and costuming. My Mum had a HALO neck brace for a while and I would do her hair for her, smaller braids lasted ages, french braids lasted the longest, and I could put her hair in small braided buns that also lasted an entire week and looked really elegant and lovely. Wishing you all the best.

[@LifewithaVent]

Thank you so much! What great information. I really appreciate it.

[@crystald3655]

There are reuseable tea balls that aren't much that simply need a rinse after emptying. But if you dont mind the leaves in the tea directly, that's ok too.

[@LifewithaVent]

Thank you for sharing. That is a great idea.

[@Mommaslew]

I thought the same! They are little mesh balls on a chain.❤

[@LifewithaVent]

@@Mommaslew That sounds like the perfect solution to my tea leaves. Thank you for sharing.

[@allenschrockyoung6975]

I just love your personality!

[@LifewithaVent]

Thank you.

[@nd6890]

You are the bravest person I have ever seen

[@LifewithaVent]

Thank you. I appreciate your kindness.

[@annettepurtle3757]

Hi hunny you do a great job of explaining everything you need to do for the day. 😊👍🏼🤗🤗🤗🤗🥰🙏🏼

[@LifewithaVent]

Thank you so much.

[@Evebear]

You are just awesome. In every essence of the word

[@LifewithaVent]

Thank you so much.

[@dawnaw1434]

Looks like your Medical training has come in handy for you. I've always been interested in the Medical Field. Your video was interesting and very informative.

[@LifewithaVent]

Thank you. I appreciate your kindness.

[@boneitch]

That electric toothbrush demonstration reminds me so much of that video of the little girl pretending to have an electric toothbrush while brushing with a regular one 🥺❤️

[@LifewithaVent]

Thank you for sharing.

[@ifazahan2153]

I'm so proud of you ❤

[@LifewithaVent]

Thank you.

[@mohankumars6811]

I'm addicted to your sense of humor 😅

[@LifewithaVent]

Thank you. I am happy to hear that.

[@mohankumars6811]

@@LifewithaVent I have one video suggestion, how to go through hard times especially in illness/chronic , sometimes it was hard to diagnose , we also lost our hope, and down . How to be motivated

[@LifewithaVent]

@@mohankumars6811 Thank you so much for the video suggestion. That is a great idea. I will add to my my future videos' list.

[@mohankumars6811]

@@LifewithaVent Thankyou so much 🖤

[@lacymcknight5043]

I hope you can get help for the blood clots. That's so scary. Do you have someone to help you at home? Thank you for showing us this part of your lifes. This video was very interesting and i love how upbeat you are. ❤

[@LifewithaVent]

Thank you for your kindness. I really appreciate it. I live with family. They help me with things such as going to appointments or helping me when I am having a bad health day.

[@michelesnyder3503]

You are amazing Loved this video!❤🎉

[@LifewithaVent]

Thank you so much.

[@albertjames9206]

God bless you I hope by the grace of God that you get better.

[@LifewithaVent]

Thank you. I appreciate your kindness.

[@sheritenbusch3007]

Really enjoy your videos, always interesting and informative. Thank you for sharing a day in your life. About the broken cup... I use my broken cup as a pencil holder🙂

[@LifewithaVent]

Thank you so much. I am glad the video was interesting. Thank you for the tip about the broken cup. That is a great idea.

[@MandingMusso]

I love your Channel really inspiring..❤️You’re an amazing person.❤️

[@LifewithaVent]

Thank you so much. I appreciate your kindness.

[@1Ear_up_HoneyBunn]

Your teeth are beautiful, first thing I noticed about you when I stumbled across your channel. 😊 Thanks for your secret, obviously it’s working! 😁

[@LifewithaVent]

Thank you so much.

[@ginagrucelski7874]

Hello, RN here. I have many questions, but mostly I'm wondering why your doctors aren't treating you for the blood clots, which are very dangerous, even deadly. Anyone taking blood thinners runs the risk of bleeding, but does your risk really outweigh the benefit? I'm just concerned. Also, I'm very impressed with how well you take care of yourself, and how meticulously you handle your PICC line! You always have a smile too! You're an inspiration. Keep up the good work, and keep hanging in there 😊

[@LifewithaVent]

Hello. Thank you for your question. I have had blood clots for many years. Doctors used to freely prescribe warfarin for blood clots. With warfarin, the person's INR level must be monitored weekly and the dose of warfarin adjusted until the desired INR level is reached. This requires frequent blood work and follow-up with the doctor. In late 2012, a drug called Eliquis (an anticoagulant) was approved by the FDA. With this medicine, the person's INR level does not have to be monitored. It is generally considered "safer" by many physicians because it requires far less follow-up. The doctor simply has to pick which dosage to use and does not need to follow-up with any lab work. Many medical providers no longer prescribe warfarin and instead use Eliquis because Eliquis is so much easier to administer. From experience, Eliquis (and also its cousin Xarelto) do not work for me. I continue to get blood clots. I need to be on warfarin. The logical thing to do is to put me on warfarin, but many doctors refuse to do so because warfarin requires all the above steps to ensure the desired INR is achieved. Doctors offices are overbooked and trying to fit me in to review weekly lab work is not something many physicians want to do. So, it is easier to tell me to take Eliquis, and when they hear Eliquis does not work for me, they tell me Eliquis is the only medicine they can administer because warfarin is "too dangerous". And with that, I am stuck without blood thinning medicine and continue to struggle with blood clots. Thank you for all your kind words. I really appreciate them.

[@goldpizza7225]

@@LifewithaVentso why no IVC filter? Further, I have plenty of patients on warfarin. This absolutely does not require a doctors visit. We just give the prescription and it is able to be used at out patient labs like lab corp or Walgreens. The blood work is reviewed by the medical team and if dose needs to be adjusted someone will call. Maybe you could bring some options up to your team? They don’t think of everything every time. I can’t imagine the best option for some one with frequent thrombosis is to risk DVTs, PEs, or CVAs…

[@LifewithaVent]

@@goldpizza7225 Thank you so much for all the information. I really appreciate the insight.

[@nd6890]

How about a daily subcutaneous injection of clexane?

[@LifewithaVent]

@@nd6890 Thank you for the suggestion. I will ask my medical team about it.

[@CindyPhillips-z7j]

Your Celebrity shirt collection sounds like our Royal Resorts T-shirt collection. We get them usually for staying and then winning games as well. The day my dreams were shattered was November 12, 2012. I had to walk away from my Practice.

[@LifewithaVent]

Thank you for sharing. I am glad you also collect vacation T-shirts. I am so sorry to hear your dreams were also shattered. How heart breaking. All my best to you.

[@CindyPhillips-z7j]

The tea you drink thru out the day is basically Golden Milk tea. You just don’t use the milk. You can buy the tea powder that you mix with warm milk. I use almond milk and it’s not bad. There are plenty of recipes to make your own preparation.

[@LifewithaVent]

Thank you so much for sharing. I appreciate the information.

[@miahan8988]

I love your humour 😂❤ I’m chronically ill too (but nowhere near your level) so I understand the humour.

[@LifewithaVent]

Thank you.

[@JunesTravels]

Looks like a long day

[@LifewithaVent]

Yes, it is a long day.

[@elianeleary.6647]

Hi, Just found your channel and I’m watching a second video of your channel. Love your attitude about all. Love the fact you have a smile while talking about everything. Do you think it is possible for you to provided the receipt of your toothpaste? Thanks. God bless you!

[@LifewithaVent]

Thank you for your kindness. Toothpaste Recipe: 3 tablespoons baking soda 3 tablespoons coconut oil 5 drops cinnamon oil 5 drops peppermint oil

[@susanmargaretwills6432]

You should be on stage... u r a natural

[@LifewithaVent]

Thank you.

[@chelciewentzel8191]

you’re so beautiful and strong❤ i’m praying for you ❤

[@LifewithaVent]

Thank you.

[@chelciewentzel8191]

@@LifewithaVent you’re so welcome

[@susanmargaretwills6432]

"Hubble-Bubble-Toil-&-Trouble"🧙🧙‍♀️🧙‍♂️... with all ur potions you beat even the witches of Macbeth🤣 - (& ur such a NICE witch)❤

[@LifewithaVent]

Thank you.

[@reeserockefellersr3388]

This is a very important question because the first question that I have asked you is whether you have any idea of what the next steps would look like for you in order ℹ you should consider the following three options for your future career and how to apply them and your current position and your current situation to make your current position better and better for your career as a professional writer in a position where I would like to be able too I am

[@rockyv180]

Love your humor.

[@LifewithaVent]

Thank you.

[@jorgeescalante4176]

Como seu diagnóstico foi confirmado ? Abraços e melhoras.

[@LifewithaVent]

Testes genéticos. Obrigado pela sua gentileza.

[@Lorraine-lr5mg]

I’ve only just come across your channel, I’ve had pots, Orthostatic Intolerance, Dysautonomia, Mcas, me/cfs, Fibromyalgia etc etc. I am recovering and getting better slowly by fixing my nervous system. Not sure if you’ve been told that that’s the root cause?

[@LifewithaVent]

Thank you so much for sharing some of your story with me. I am so sorry you have been through so much, but I am so happy to hear you are recovering. How wonderful! Do you have any information on how to the fix the nervous system? Is there a treatment protocol? Any information you can provide would be a greatly appreciated.

[@Lorraine-lr5mg]

@@LifewithaVent yes unfortunately not many doctors understand it yet. I’ve been in a few programs but the one that has helped the most is CFS Recovery. They also have lots of free content on KZbin. You can also look up Raelan Agle on KZbin, she interviews lots of people who have recovered. I was bedbound and in and out of hospital, in a wheelchair. I’ve got a long way to go still but I’m sooo much better now. Basically Mcas, pots, me/cfs, fibro, pots etc etc are all from your nervous system (in your brain) thinking that your body is in danger so it sends all these symptoms to try keep the body safe. It puts the body into a freeze state, it’s the amygdala that’s gone out of balance with the frontal cortex. Loads and loads of people have fully recovered and are living a normal life now. ❤️

[@LifewithaVent]

Thank you so much for all the information. I really appreciate it. That is really interesting. I will look into CFS Recovery and Raelan Agle. I am so glad you are the path to better health. I hope you have a full and complete recovery.

[@sueyoung2115]

​​@@LifewithaVent sweet soul, I just found your site. You remind me of a granddaughter. I'm so happy you can be smiling while you deal with your condition. I've just watched Dr. Seheult from, " Med Cram". He's presented a very convincing amount of information supporting the use of near infared light to improve mitochondrial functioning. (I'm on the subject because of long coffeid). Fifteen or so minutes out in direct sunshine may give you a measurable improvement! Praying for you! (🙏💞 Grammie Sue)

[@learnej]

Hi!I have similar issues to you.Could you please share what you have been doing to fix your nervous system?Thanks in advance!

[@adenadodaja7412]

Iloveyou from Philippines 🎉 i love watching ur video for my caregiver work purposes, ur video is very interesting knowledgeable to us in medical field thank u soo much dear❤

[@LifewithaVent]

Thank you so much. I am glad the video is helpful.

[@Agnes_B96]

Have you considered yourself being on the autism spectrum? I’ve just got diagnosed with autism and I have POTS and Ehlers-Danlos too. My skin is also very sensitive just like yours, and I have mast cell activation syndrome too and allergies. And autism and these conditions are very very often comorbid. For me being diagnosed with autism at 28 saved my life. I understand myself so much better now. In women autism present differenly than the stereotypical presentation of autism.

[@LifewithaVent]

Thank you for sharing some of your story with me. I appreciate the insight. I will look into autism.

[@Agnes_B96]

@ her channel is a great source of information about autism in women: youtube.com/@momonthespectrum?si=G5ul4pI1vslPpAXK

[@visionvixxen]

Spot on is what I was thinking

[@LifewithaVent]

@@visionvixxen Great insight. Thank you.

[@kur0nek089]

One thing i find funny is how different Things Taste when you get Saline, blood or other things trough a picc line ore a cvc... the Saline for me was always feeling really refreshing

[@LifewithaVent]

Thank you for sharing.

[@candaceberman1448]

Great video I also like free stuff to

[@LifewithaVent]

That is great. Thank you for sharing.

[@irumkhan3684]

You are extremely exhausted you should take rest my dear 😊

[@LifewithaVent]

Thank you. I will.

[@lindajackson2382]

I know about Beta blockers. They use them a lot for high blood pressure. You had said this is a chronic condition you have. Are they continuing to do research for a cure for this condition?

[@LifewithaVent]

Thank you for your question. Yes, there is research going on for Mitochondrial Disease. Perhaps one day there will be a cure.

[@something_fuzzy]

I've heard you mention every ailment it seems, but i haven't heard you mention MCAS and your symptoms scream MCAS. Have you or your doctors considered this? The extreme sensitivity, esp to heat, POTS, and the EDS are what made my mind go there.

[@LifewithaVent]

Thank you for asking. Yes, I have MCAS.

[@babciamira9556]

Oh, dear, dear, stay with us! Do your work. Let us understand you. You have the attitude of a doctor and the documentary in one.

[@LifewithaVent]

Thank you.