This video is amazing! As a teenage girl who suffers from multiple chronic illnesses, I find this video really helpful because I always forget something.
This video and the part 1 has been a life saver, I suffer with endometriosis, ovarian cysts and cdiff, I’ve always been trying to find things to help with the symptoms. So thank you! Xx
You have my sympathy as some who took care of his mom in her later years when she got cdiff. Also I have been recently been diagnosed with lupus. Thanks for this video.
I have the Purple company's Ultimate Seat Cushion. It's heavy, it's expensive, and it is great for sitting and not winding up in a ton of pain. I won't go in a car trip without it. I only wish I could take it on an airplane. They do make two lighter weight travel versions so I'm considering getting 1 of them.
I have to always have a Berkey water filter, because I can't drink tap water (the last time I had tap water, I got a horrible sore throat from contaminants that lasted 4 days, and I'm not supposed to have tap water anyway) - I have a water bottle with one, so I can still get water anywhere, and a slightly bigger one for when I get to my destination (an additional benefit is that it can make even bad-tasting tap water taste perfectly fine). When I'm on a plane, I have to use a log-shaped pillow and shove it down in the crack between the seat and seat back (I thoroughly clean the entire seating area first), because if I don't, my SI joints complain bitterly (I think I might have scoliosis, though not entirely sure, and any support on my lower back really hurts unless it's right over those joints); I use it for my head for sleeping on road trips; it also means that my short legs aren't as much of a problem, since it makes me sit slightly further forward in the seat. I like to use Banana Bag Drink for electrolytes, since there's almost no sugar but still high in sodium and other electrolytes - I especially like it when flying, because it's a packet of powder, so I can take as much as I want on the plane, but still means basically no sugar. I always take my Cambridge Mask with me, and wear it in the airport and on the plane (the entire time except for eating/drinking) - I credit not getting sick last year until months later to wearing it the entire time I was in the plane and and in the airport.
I love you videos!!! My essential for any type of traveling is my pillow and blanket. I must have my own blanket and pillow in order to be comfortable and be able to lay in a position that work for my body
i have multiple chronic illnesses too and i used to travel before i became sick and I want to do it again Ive been so scared to go on a plane as I am now but I am hoping to get passed my fears soon...i am def going to be getting some of the items you mentioned also this was a great video I dont have pots but my illnesses give me.very similar issues
I have neurofibromatosis my travel essentials are - heat pads -pain meds -(my supplements vit D and turmeric) -wraps for my joints (incase of flair up) - hard candy for nausea but don't often need it - salty snacks for my orthostatic hypotension I'm lucky that i don't have it that bad I'm traveling by train from Glasgow to London in summer (takes 6 hours) thanks for tips
I have P.O.T.S (Postural orthostatic tachycardia syndrome) E.D.S (Ehlers-Danlos syndrome) C.R.P.S ( Chronic regional pain syndrome) Fibromyalgia Bartonella vasovagal presyncope Dysautonomia Hashimotos Seizures Asthma And Chronic fatigue , and it’s so difficult to travel. Especially with my wheelchair and sd
also so good about the Clorox wipes. When I am in the hospital my family brings wipes and re cleans the room. I have watched videos about how a room should be cleaned, and not one hospital has done it right.
I have Lupus and Ankylosing Spondylitis. Thank you for sharing your travel essentials. My conditions have recently taken a turn for the worse and I'm trying to not let my illnesses stop me, so having aids / tools to help are a big deal. Thanks again!
Hi, I just wanted to say that you are very inspiring. I have some chronic illnesses as well. I like the idea of wearing a mask on the plane. I never thought about it before. I am allergic to all antibiotics so if I get sick I have to be hospitalized which is no fun. I just wanted to say this was very helpful and I subscribed and I'm sending you positive vibes! ♡♡♡♡
It really is not a joke. My parents tell me I'll be fine but I know that if I don't plan ahead and take what I need I won't be OK . Hope you're hanging in there!!
Yes! I have pots and last year I ate pretzels as soon as I got to the airport and while I was on the plane when I started feeling the slightest bit dizzy. Also I drank tons of water before heading to the airport, and then after security filled up my water bottle again. I’m going on a trip in a few days again so I’m watching this to see your tips! Looking beautiful and gracious as always, keep fighting!
I have had a chronic illness all my life, but since Christmas when I got sepsis, I have been much iller than before. I am going on vacation next month to somewhere I have been wanting to go for years and I am really worried that my illnesses will get in the way of me enjoying my time away. How do I not let my illnesses get in the way of me having a good time?
I just found you on UA-cam. I have been searching for more youtubers that have chronic illnesses that can maybe help me out with some advice on travel and living with multiple chronic illnesses like me. You may not have the same chronic illnesses I have but some of yours have similar symptoms as mine so your advice could help me tremendously. Like your pots has similar symptoms as my syncope. Your gastriparesis has similar symptoms as my multiple chronic gastric issues I am just beginning to start the whole gastroparesis problem my stomach is only 10% paralyzed at this point so I can still eat but I have lots of nausea issues with it. My entire intestinal tract is inflamed and I have a hiadal hernia, I am also allergic to gluten. I have epilepsy and hydrocephalus. I have an autoimmune disorder called Hidradenitis Suppurativa which has to do with my skin. I am pretty much allergic to everything and I need help understanding how to make the best of life with all of this.
I'm glad that you are getting answers! With EDS that is half the battle. It took them 33 years to find my hEDS and even longer for the POTS, MCAS and IBS. It has been a long road for me, and I wouldn't wish that upon anyone! Good luck!
You want a nano facial mister, you fill it with mineral water and a small amount of toner, it mists cool water over your face for about 60 seconds. Look on Amazon, the one by skg or kingdom cares are the best. I've got one for my sister, she's epileptic and suffers from seizures if she gets too hot, the nano facial mister has been a life saver.
This helped a lot, thank you so much! I’m going to go travel for the holidays and I needed a guide :) Also, I have to keep my injections cold, does anybody know an efficient way to pack them? Edit: Omg thank you so much for highlighting this!! It made my day :D Sending love 💕
One way might be to put them in an insulated bag with ice packs. If they can't be directly against the ice packs, maybe wrap the medication in a washcloth/towel/whatever's big enough but not too thick before putting them in. Just one idea.
Ahh, travel is never fun...add in chronic illness, and it’s even harder! Actually planning on getting this same vogmask! If you need to wear a mask, you might as well be able to have some style while doing it! I love my zebra stripes and purple paisley 😷
Honestly, vog masks aren't my favorite anymore. They're kind of uncomfortable and I prefer hand made ones from like etsy! They tend to be less expensive too!
Is their generic versions that look like types of vogmask. So does anyone know if their are cheaper brands that are still good quility... I hate trying be cheap when come to tCONSANT cost of stuff adds up. Thanks for video
My personal favorite is the Cambridge Mask (Pro is $30 on Amazon, Basic is less) - a lot like a VogMask, but they're adjustable, and if worn *constantly* in "normal" quality air, will last 6 months (longer if not worn constantly and stored properly). It also filters out all sorts of things, including cig. smoke, VOCs, wood smoke, perfume, as well as dust, mold, and a lot of other things (speaking from experience); they were designed to be used in very polluted cities, so they're N95 (basic) and N99 (pro). They have a website, too, so check that out for more information (just google "cambridge mask" and it should come up). The last time I flew, I wore mine constantly (except for eating/drinking) from the time I got out of the car at the origin airport until I walked out of the destination airport, and I didn't get sick from the travel, even though I started college the next day (nb, I'm not immunodeficient, only immunosuppressed, but I still noticed a difference). Hope that helps at least a little bit.
I love Vogmask. They are an awesome company with a great product as well as customer service that without equal. They do so much for us transplant recipients. Thanks for this video! Wonderful advice.
I noticed when I wear it on airplanes, I don't get sick but honestly I wouldn't recommend getting the brand vog mask as they're expensive and kinda uncomfortable. You can find tons of cuter and cheaper ones on etsy!
Ah you have c.diff too 😐 i have it also, got it from my grandmother before she died aaand i am non stop on probiotics (not a bad thing but..) btw penicillin g, the one that they put it in your but cheak doesnt seem to mind tbe c.diff. I got a strep and told them to put me on 10 day penicilin g and yes they shot me everyday in my but cheaks but i did not get the c.diff, and i got the strongest probiotic that i could find. Just dont take oral cefalosporins and you will be ok... Btw does cocacola and sweets make your stomatch worse?
I'm so sorry you have to go through all of this. Fortunately, I haven't needed any antibiotics yet for any other infections. Almost anything upsets my stomach, so I stick to bland foods as much as possible.
Simply Hannah i found out a diet that suits me the most and i eat that almost every day and only at home. Everytime i eat something outside it makes my stomach weird. It mostly consist of at the morning good quality yogurt (european that liquid stuff) with home made bread and cheese (high quality). Supper is meat only with salt and always fried on a pan with olive oil. Salads i loved before now only green papers with olive oil and salt. Olives (black ones) seem to do good on my stomarch. After supper i take the probiotic. At night i always eat again that healthy yogurt with (don't know the English word for it) those frozen doug of a thing that when baked enlarge 4 times.. with white cheese..so I mostly eat non seasoned solid foods and every day different kind of meat. Always like always the ibs kicks in after eating meat but my stomatch got used to it..its hard to find probiotoc that is actually working, they die over 25c (celsious) and most of the time you get nothing from the probiotic and i think most of people c.diff problems come from non efficient probiotic. Remember c.diff can not be killed, you can only outgrow it with healthy bacteria.
This video is amazing! As a teenage girl who suffers from multiple chronic illnesses, I find this video really helpful because I always forget something.
This video and the part 1 has been a life saver, I suffer with endometriosis, ovarian cysts and cdiff, I’ve always been trying to find things to help with the symptoms. So thank you! Xx
You have my sympathy as some who took care of his mom in her later years when she got cdiff. Also I have been recently been diagnosed with lupus. Thanks for this video.
I just found out about you from inside addition
I have the Purple company's Ultimate Seat Cushion. It's heavy, it's expensive, and it is great for sitting and not winding up in a ton of pain. I won't go in a car trip without it. I only wish I could take it on an airplane. They do make two lighter weight travel versions so I'm considering getting 1 of them.
I have to always have a Berkey water filter, because I can't drink tap water (the last time I had tap water, I got a horrible sore throat from contaminants that lasted 4 days, and I'm not supposed to have tap water anyway) - I have a water bottle with one, so I can still get water anywhere, and a slightly bigger one for when I get to my destination (an additional benefit is that it can make even bad-tasting tap water taste perfectly fine). When I'm on a plane, I have to use a log-shaped pillow and shove it down in the crack between the seat and seat back (I thoroughly clean the entire seating area first), because if I don't, my SI joints complain bitterly (I think I might have scoliosis, though not entirely sure, and any support on my lower back really hurts unless it's right over those joints); I use it for my head for sleeping on road trips; it also means that my short legs aren't as much of a problem, since it makes me sit slightly further forward in the seat. I like to use Banana Bag Drink for electrolytes, since there's almost no sugar but still high in sodium and other electrolytes - I especially like it when flying, because it's a packet of powder, so I can take as much as I want on the plane, but still means basically no sugar. I always take my Cambridge Mask with me, and wear it in the airport and on the plane (the entire time except for eating/drinking) - I credit not getting sick last year until months later to wearing it the entire time I was in the plane and and in the airport.
I love you videos!!! My essential for any type of traveling is my pillow and blanket. I must have my own blanket and pillow in order to be comfortable and be able to lay in a position that work for my body
Thank you so much! I appreciate it! 😄
i have multiple chronic illnesses too and i used to travel before i became sick and I want to do it again Ive been so scared to go on a plane as I am now but I am hoping to get passed my fears soon...i am def going to be getting some of the items you mentioned also this was a great video I dont have pots but my illnesses give me.very similar issues
I have neurofibromatosis my travel essentials are
- heat pads
-pain meds
-(my supplements vit D and turmeric)
-wraps for my joints (incase of flair up)
- hard candy for nausea but don't often need it
- salty snacks for my orthostatic hypotension
I'm lucky that i don't have it that bad I'm traveling by train from Glasgow to London in summer (takes 6 hours) thanks for tips
I have P.O.T.S (Postural orthostatic tachycardia syndrome)
E.D.S (Ehlers-Danlos syndrome)
C.R.P.S ( Chronic regional pain syndrome) Fibromyalgia
Bartonella
vasovagal presyncope
Dysautonomia
Hashimotos
Seizures
Asthma
And Chronic fatigue , and it’s so difficult to travel. Especially with my wheelchair and sd
I really like Liquid IV for electrolytes
Thank you!! Am probably gonna travel for the first time since my EDS got real bad in a bit over a week, and this was rly helpfull!
Hope you feel better soon and be happy 😃
also so good about the Clorox wipes. When I am in the hospital my family brings wipes and re cleans the room. I have watched videos about how a room should be cleaned, and not one hospital has done it right.
I have Lupus and Ankylosing Spondylitis. Thank you for sharing your travel essentials. My conditions have recently taken a turn for the worse and I'm trying to not let my illnesses stop me, so having aids / tools to help are a big deal. Thanks again!
I'm so sorry you have to go through this! Sending positive thoughts and prayers your way! 💕
Great Video 👍. Thank you for posting.
Definitely salty snacks for POTS.
I use hand sanitizer all the time. I get sick very easily so that is a must. I'm going to be getting vog masks in the next 4 weeks.
Is there any non scent hand sanitizer? I can't stand the ones with scent.
I'm new here because I found out about you on inside addition and I think I will be back because your so inspiration and because I love your room.
Hi, I just wanted to say that you are very inspiring. I have some chronic illnesses as well. I like the idea of wearing a mask on the plane. I never thought about it before. I am allergic to all antibiotics so if I get sick I have to be hospitalized which is no fun. I just wanted to say this was very helpful and I subscribed and I'm sending you positive vibes! ♡♡♡♡
This definitely helped me. I'm traveling and trying to pack with all of these illnesses! Ugh! The struggle is REAL!
I'm so happy!! Traveling with a chronic illness is no joke!
It really is not a joke. My parents tell me I'll be fine but I know that if I don't plan ahead and take what I need I won't be OK . Hope you're hanging in there!!
Thank you! I hope you are as well!
Dr Scholl’s at Walmart have $10 compression socks and there are Walmart’s everywhere even on vacation
Hello Simply Hannah How are you? is that mask is useable and washable and do you need to buy a new one after the date run out?
You have a Vog Mask? Me too! I wear it whenever I leave the house.
Yes! I have pots and last year I ate pretzels as soon as I got to the airport and while I was on the plane when I started feeling the slightest bit dizzy. Also I drank tons of water before heading to the airport, and then after security filled up my water bottle again. I’m going on a trip in a few days again so I’m watching this to see your tips! Looking beautiful and gracious as always, keep fighting!
Thankyou for your video
thank you so much for the video!
I have crohn's disease and literally can not travel anywhere without mini baby wipes, my RADAR key and a little bottle of aftershave.
I have had a chronic illness all my life, but since Christmas when I got sepsis, I have been much iller than before. I am going on vacation next month to somewhere I have been wanting to go for years and I am really worried that my illnesses will get in the way of me enjoying my time away. How do I not let my illnesses get in the way of me having a good time?
Wow, you are really ready. Your bag must be quite heavy tho. Thanks for sharing 🙏
Woah! I have a whole in my heart too!
I have JIA that’s it but should I wear a mask
Wow it must be tough having to deal with all those conditions i only have crohns disease and IBS and i always HATE traveling or planes lol
I have a hole in my heart,too!
I just found you on UA-cam. I have been searching for more youtubers that have chronic illnesses that can maybe help me out with some advice on travel and living with multiple chronic illnesses like me. You may not have the same chronic illnesses I have but some of yours have similar symptoms as mine so your advice could help me tremendously. Like your pots has similar symptoms as my syncope. Your gastriparesis has similar symptoms as my multiple chronic gastric issues I am just beginning to start the whole gastroparesis problem my stomach is only 10% paralyzed at this point so I can still eat but I have lots of nausea issues with it. My entire intestinal tract is inflamed and I have a hiadal hernia, I am also allergic to gluten. I have epilepsy and hydrocephalus. I have an autoimmune disorder called Hidradenitis Suppurativa which has to do with my skin. I am pretty much allergic to everything and I need help understanding how to make the best of life with all of this.
I'm confused. A lot of the time POTS and IBS are interrelated with EDS. Have you mentioned whether you have been checked for EDS?
I was recently diagnosed with EDS, and I actually found out that I have gastroparesis instead of IBS!
I'm glad that you are getting answers! With EDS that is half the battle. It took them 33 years to find my hEDS and even longer for the POTS, MCAS and IBS. It has been a long road for me, and I wouldn't wish that upon anyone! Good luck!
You want a nano facial mister, you fill it with mineral water and a small amount of toner, it mists cool water over your face for about 60 seconds. Look on Amazon, the one by skg or kingdom cares are the best. I've got one for my sister, she's epileptic and suffers from seizures if she gets too hot, the nano facial mister has been a life saver.
Omg...3 years later everyone on earth is using face mask and hand sanitizer! Thanks so much for all your tips!
This helped a lot, thank you so much! I’m going to go travel for the holidays and I needed a guide :) Also, I have to keep my injections cold, does anybody know an efficient way to pack them?
Edit: Omg thank you so much for highlighting this!! It made my day :D Sending love 💕
One way might be to put them in an insulated bag with ice packs. If they can't be directly against the ice packs, maybe wrap the medication in a washcloth/towel/whatever's big enough but not too thick before putting them in. Just one idea.
Ahh, travel is never fun...add in chronic illness, and it’s even harder! Actually planning on getting this same vogmask! If you need to wear a mask, you might as well be able to have some style while doing it! I love my zebra stripes and purple paisley 😷
I tried buying a Vog mask from the official site but the large sizes were all sold out...
Honestly, vog masks aren't my favorite anymore. They're kind of uncomfortable and I prefer hand made ones from like etsy! They tend to be less expensive too!
Is their generic versions that look like types of vogmask. So does anyone know if their are cheaper brands that are still good quility... I hate trying be cheap when come to tCONSANT cost of stuff adds up. Thanks for video
My personal favorite is the Cambridge Mask (Pro is $30 on Amazon, Basic is less) - a lot like a VogMask, but they're adjustable, and if worn *constantly* in "normal" quality air, will last 6 months (longer if not worn constantly and stored properly). It also filters out all sorts of things, including cig. smoke, VOCs, wood smoke, perfume, as well as dust, mold, and a lot of other things (speaking from experience); they were designed to be used in very polluted cities, so they're N95 (basic) and N99 (pro). They have a website, too, so check that out for more information (just google "cambridge mask" and it should come up). The last time I flew, I wore mine constantly (except for eating/drinking) from the time I got out of the car at the origin airport until I walked out of the destination airport, and I didn't get sick from the travel, even though I started college the next day (nb, I'm not immunodeficient, only immunosuppressed, but I still noticed a difference). Hope that helps at least a little bit.
What size is your vog mask? and does it fit well size wise? I was reading reviews and can’t decide which size to get 😅 x
I got a medium and it's really snug on me. If I were to order another, I definitely would get a large!
I love Vogmask. They are an awesome company with a great product as well as customer service that without equal. They do so much for us transplant recipients. Thanks for this video! Wonderful advice.
Where you get your mask?
Amazon!
why are you so pretty??😍😍
Do the vogmasks help? I don’t wanna spend a lot of money if it doesn’t :/ xx
I noticed when I wear it on airplanes, I don't get sick but honestly I wouldn't recommend getting the brand vog mask as they're expensive and kinda uncomfortable. You can find tons of cuter and cheaper ones on etsy!
Simply Hannah okay thanks x
They also do not actually protect against allergens and bacteria
Ah you have c.diff too 😐 i have it also, got it from my grandmother before she died aaand i am non stop on probiotics (not a bad thing but..) btw penicillin g, the one that they put it in your but cheak doesnt seem to mind tbe c.diff. I got a strep and told them to put me on 10 day penicilin g and yes they shot me everyday in my but cheaks but i did not get the c.diff, and i got the strongest probiotic that i could find. Just dont take oral cefalosporins and you will be ok...
Btw does cocacola and sweets make your stomatch worse?
I'm so sorry you have to go through all of this. Fortunately, I haven't needed any antibiotics yet for any other infections. Almost anything upsets my stomach, so I stick to bland foods as much as possible.
Simply Hannah i found out a diet that suits me the most and i eat that almost every day and only at home. Everytime i eat something outside it makes my stomach weird. It mostly consist of at the morning good quality yogurt (european that liquid stuff) with home made bread and cheese (high quality). Supper is meat only with salt and always fried on a pan with olive oil. Salads i loved before now only green papers with olive oil and salt. Olives (black ones) seem to do good on my stomarch. After supper i take the probiotic. At night i always eat again that healthy yogurt with (don't know the English word for it) those frozen doug of a thing that when baked enlarge 4 times.. with white cheese..so I mostly eat non seasoned solid foods and every day different kind of meat. Always like always the ibs kicks in after eating meat but my stomatch got used to it..its hard to find probiotoc that is actually working, they die over 25c (celsious) and most of the time you get nothing from the probiotic and i think most of people c.diff problems come from non efficient probiotic. Remember c.diff can not be killed, you can only outgrow it with healthy bacteria.
What size vogmask do you wear
Medium but it's pretty snug on me. For reference, I'm 5'8 and 110 lbs.
I just found outon inside edition
This clorox wipes isn't bleach????
I have a hole in my heart found out when I was 18 now I'm 24 . so far that the only health issue I have
5:47 I know these masks thanks to Jaquie from Chronically Jaquie.
7:58 I would only say that you lied if you *purposely* said it wrong.
A holl in your heart
This girl was ready for corona
try this Mexi rican mommy
cutie
hmmmm I see a hot pink wall there
I told you! Hahahaha thank god it's gone
What is the infection you have? My mom wipes down everything when we get on the plane
I have a c. diff infection but I also have an immune deficiency