Hi! I’m new here, and wanted to say I’m extremely happy to see someone be so supportive and open minded about everything going on. As someone that has been diagnosed with autism since a young age, it’s really cool to see someone so open and positive. Definitely gonna do a binge watch.
Hi Jaquie, Watching this video was a bit of a mental game changer for me. I’ve been struggling “getting it together” and admitting my health is deterrent to traveling. I realize I need things like this to “get through” traveling long distances or staying nights away from home. I just ordered a more accommodating toiletry bag for meds and such. Thank you for sharing your life with us and I hope your out of the hospital soon. 💕
Your videos are very helpfull. For many years i suffered with unexplained health problems, some minor and some major. After finally being told that my immune system is the cause i studied for hundreds of hours to try to understand. I too could not travel without increasing my symptoms. I had thought it was related to my position in the vehicle or the vibrations. The vibrations were just aggravating my problem and not causing it. The reason my symptoms are increased is because of fine particle pollution. Inside a car the levels are constantly high and so is the case very often in motorway service stations for example. Equiped with a particle meter i was able to finally understand the real reason for my problems. Seven years of illogical findings became explainable. After wearing a ppm3 mask while driving i found a slight improvement,i was able to drive 50 kms without major problems. My flares were less frequent and only minor. I then built for about 50€ an active carbon filtration system which i plug into the cigarette lighter. I can now drive 1'000 kms without a problem as long as i stay in my car. Before this a 100 kms trip would allways result in a short or long stay in bed waiting for the flare to calm down. I can also put the filter in my house if needed. It is unclear what part particle pollution plays in my illness,studies on mice have shown that diesel exhaust allthough not responsible for triggering abnormal activity of mast cells has been the cause of a huge increase in the mast cell activity when activated by another cause. I do not know if particle pollution is the cause of my problem or just responsible for making it a hell of a lot worse but what i do know is that by avoiding it my problems have become managable and i have at last a life that is very close to normal. If anybody would like to know more i would be more than happy to help.
Great ideas. I tend to avoid traveling because of the pain. But,, I'm missing out and I don't want to miss out. I've got to get one of those car to electric converters. That would make a trip game changer for me. My DRs say to make frequent stops to get out of the car and get the circulation going in my hips and legs. So we try to incorporate those stops with site seeing, dog walking, pic taking or a quick shopping. Thanks for the tips. Love them
I’m flying tomorrow from NC to NY and with me having multiple sclerosis and anxiety issues I believe I’m prepared, it’s just exhausting remembering everything I need health wise I admire you Jaquie
Hi! I just wanted to thank you for posting your story, I was recently diagnosed with EDS and didn’t know what it was or what to do about it. You helped me figure out how to live with a chronic illness as well as find out that I also have POTS which I was officially diagnosed with as of 2 days ago. Just wanted to let you know that all your hard work is really contributing ❤️ it is so informative that I have my family members watch your videos to understand more too! Thanks again! -Jaden
thanks for this you are so good at doing info (information) videos. I have a travel neck pillow for road trips my one is convertible one so it can go around my neck or be rectangular.
First things first, I love that top. Second thing, I live in Alaska, roadtrips are a normal commute for a lot of us in Alaska, we've kinda become experts at it I guess you could say. All your tips and tricks are very handy because they are pretty much what all Alaskan's do for roadtrips. I never leave with out a blanket, pillow, added comfort objects, and pajama clothes on. So in a way, I'm saying thank you for letting everyone else know how to roadtrip comfortably, some people may not have known!
Hi Miss Jaquie, The information about traveling with your service dog, making sure to recheck that you have everything has been informative and helpful. Thank you. I have been trying to find a Service dog community during my research for information. I am not trying to be rude or invade anyone's privacy or anything I just need Someone to talk to who has a service dog. Information is helpful Thank you for y our time
ReLeaf neck pillow. With my EDS related cervical spine issues the ReLeaf is AMAZING. I use it for air and car travel. After 5 cervical fusions it's supportive, light, and well sized
I use a sheepskin on seats. It’s cushioning and provides either warmth or cooling if needed. I’ve found that natural fibers like wool, cotton and linen help regulate my body temperature better than synthetic fabrics. Electric coolers are great too. We got one from Amazon. Just plug into the car and it keeps things cool. It also plugs into the wall with the adapter it comes with. I’ve used mine for 4-5 days at a time. We do 3 day road trips from northern New England to Florida once’s a year. The stress of it is also hard and normally aggravates my MCAS. On top of GP challenges and body pain.
We call those handles oh S&#t handles. I have finally been approved for a port so I'm definitely buying the seatbelt cover and will get the car converter to bring my heating pad. I can't go even a half an hour in a car without getting more pain and having to stretch ext. This has been soo helpful. Thank you!!!
I definitely don't have nearly as much pain as you do, but I feel like a lot of this would be helpful for me traveling with endometriosis pain, scoliosis, and Celiac disease.
Do you happen to know the size of your converter that handles your heating pad? I bought one and it didn't work for my pad. I don't think it had enough power (or something). Figured I'd ask before I go out and buy another one. Your explorer is a much safer vehicle as well. I've seen accidents with Rav4's, not pretty. Glad you were able to go on your trip and visit family.
Does anyone have any tips for keeping medication/nutrition supplements cold during a looooong road trip? I am trying to find a better way than a typical cooler. I’m so worried about water leaking into meds and the extreme cold from ice aggravates a lot of my conditions.
StillSurviving You can get coolers that plug in to the car like a fridge, maybe you could find one that would work for you? They don't need ice in them but I'm not sure what temprature they usually go to.
I call them "oh shit handles" LOL!!! These are all great tips. I am waiting for my brave soles blanket to get delivered but I think it is going to be amazing for hospital stays and trips...
I got my weighted blanket last week and am LOVING it. I may have to get a lap pad for travel. I’ve been using a buckwheat pillow. I got my blanket during the promo you had when you got your blanket. Thank you❣️ 🐾💖🐾💖🐾
Yvonne Kass I don't fly but Amazon has USB heating pads that you could use a portable charger to power during flights if there are not USB charging ports on planes.
I LOVE That you said "conquer roadtrips "! That handle is something i wont say here lol and sometimes i use it to not slide. Sorry if this is personal, but can you feel your bum? I can't so my dad usually turns off the "butt warmer".
Jaquie, I find these types of videos very informative. You speak so well and the information that you share on your chosen topic is complete & concise. And,of course, you also have first hand experience and can share what has or hasn't worked for you. Great job!!! 🤗❤️
The vibration of the car really sets my MCAD off. I have tried some stuff but putting the wheelchair cushion on the chair does help a little. Doesn't eliminate it entirely but every little bit helps.
Hi , I’m going through a service dog program and the lady said these following dogs would fit my needs which one would you pick: German Shepherd Labrador retriever Labradoodle Golden retriever St brunard . Also I have A lot of the thing you do such as P.O.T.S ( Postural orthostatic tachycardia syndrome) Bartonella E.D.S (Ehlers-Danlos syndrome) M.C.A.S (Mast cell activation syndrome) Epilepsy Fibromyalgia C.R.P.S (Chronic regional pain syndrome) C.I.R.S (chronic inflammatory response syndrome) Hashimotos Vascovagal presyncope And a few other little things.
I am partial to golden's ;D But honestly you need to choose based on your needs and the dog's specific temperament. I would talk more with your doctor and organization, they will know best :) Sorry I cannot help more but I am not as close to the situation as they are and I do not want to mislead you. I do, however, want to wish you good luck!
German Shepherds can be really mentally and physically demanding. That in mind, I would recommend a Golden Retriever or Labrador, considering the Doodles I've met are also quite energetic! However if you have a lot of issues with allergens, even though it's not on the list, a pure bred Poodle might be a good choice. St. Bernards are prone to drooling and they are MASSIVE compared to those other breeds. Not to mention the grooming! I do think it really depends on what you can and can't manage with a dog as well, like exercise and grooming.
Cool love the heating pad. That might be a good idea to think about getting on our next road trip. By the time we got back from GA the weekend before last. I was in so much pain. Oh and I have a garbage bin also Jaquie. 🌸
Thank you for sharing! We go on long drives, sometimes a few times a week for doctor appointments and I have a lot of chronic pain because my EDS. Happy Harlow! So cute! Jaquie I hope your having a good day. And thank you for putting the links for those things. Thats very helpful!Continued prayers for you all! Also Jaquie why dont you wear Vogmask anymore? And for the Cambridge how is the sizing? Do you wear children size or M (adult)? Trying to figure out sizing for me.
My immunologist said I do not need it anymore (except places like hospitals, ERs, etc) because my IgG is in normal levels thanks to IVIG. I hate wearing it because it is uncomfortable so I am happy to be without a mask. I think I am a medium but not totally sure.
Waiting for the day w self driving vehicles as the norm..... Altho probably not in my lifetime. Altho I can drive, prefer not to due to health issues. Lucky you do have folks that can drive you! Cars....a necessary evil. ;)
Hi! I’m new here, and wanted to say I’m extremely happy to see someone be so supportive and open minded about everything going on. As someone that has been diagnosed with autism since a young age, it’s really cool to see someone so open and positive. Definitely gonna do a binge watch.
0:22 YOO ITS MY WHEELCHAIR! hehe well mines black not pink!
Hi Jaquie, Watching this video was a bit of a mental game changer for me. I’ve been struggling “getting it together” and admitting my health is deterrent to traveling. I realize I need things like this to “get through” traveling long distances or staying nights away from home. I just ordered a more accommodating toiletry bag for meds and such. Thank you for sharing your life with us and I hope your out of the hospital soon. 💕
Your videos are very helpfull.
For many years i suffered with unexplained health problems, some minor and some major. After finally being told that my immune system is the cause i studied for hundreds of hours to try to understand. I too could not travel without increasing my symptoms. I had thought it was related to my position in the vehicle or the vibrations. The vibrations were just aggravating my problem and not causing it. The reason my symptoms are increased is because of fine particle pollution. Inside a car the levels are constantly high and so is the case very often in motorway service stations for example. Equiped with a particle meter i was able to finally understand the real reason for my problems. Seven years of illogical findings became explainable. After wearing a ppm3 mask while driving i found a slight improvement,i was able to drive 50 kms without major problems. My flares were less frequent and only minor. I then built for about 50€ an active carbon filtration system which i plug into the cigarette lighter. I can now drive 1'000 kms without a problem as long as i stay in my car. Before this a 100 kms trip would allways result in a short or long stay in bed waiting for the flare to calm down. I can also put the filter in my house if needed. It is unclear what part particle pollution plays in my illness,studies on mice have shown that diesel exhaust allthough not responsible for triggering abnormal activity of mast cells has been the cause of a huge increase in the mast cell activity when activated by another cause. I do not know if particle pollution is the cause of my problem or just responsible for making it a hell of a lot worse but what i do know is that by avoiding it my problems have become managable and i have at last a life that is very close to normal.
If anybody would like to know more i would be more than happy to help.
Great ideas. I tend to avoid traveling because of the pain. But,, I'm missing out and I don't want to miss out.
I've got to get one of those car to electric converters. That would make a trip game changer for me. My DRs say to make frequent stops to get out of the car and get the circulation going in my hips and legs. So we try to incorporate those stops with site seeing, dog walking, pic taking or a quick shopping. Thanks for the tips. Love them
Watching this tueday morning
I’m flying tomorrow from NC to NY and with me having multiple sclerosis and anxiety issues I believe I’m prepared, it’s just exhausting remembering everything I need health wise I admire you Jaquie
Hi! I just wanted to thank you for posting your story, I was recently diagnosed with EDS and didn’t know what it was or what to do about it. You helped me figure out how to live with a chronic illness as well as find out that I also have POTS which I was officially diagnosed with as of 2 days ago. Just wanted to let you know that all your hard work is really contributing ❤️ it is so informative that I have my family members watch your videos to understand more too! Thanks again! -Jaden
thanks for this you are so good at doing info (information) videos. I have a travel neck pillow for road trips my one is convertible one so it can go around my neck or be rectangular.
I’ve been trying to find support cushions that are slightly
inexpensive. If I never saw this video I’d never find them , thanks Jacque!
Hi Jaquie, I really appreciate how thoroughly you convey different aspects of chronic illness and how it impacts everyday life.
You are a great inspiration to so many people and such excellent tips!! Many blessings to you and your family as well as Harlow 💗
First things first, I love that top. Second thing, I live in Alaska, roadtrips are a normal commute for a lot of us in Alaska, we've kinda become experts at it I guess you could say. All your tips and tricks are very handy because they are pretty much what all Alaskan's do for roadtrips. I never leave with out a blanket, pillow, added comfort objects, and pajama clothes on. So in a way, I'm saying thank you for letting everyone else know how to roadtrip comfortably, some people may not have known!
Hi Miss Jaquie, The information about traveling with your service dog, making sure to recheck that you have everything has been informative and helpful. Thank you. I have been trying to find a Service dog community during my research for information. I am not trying to be rude or invade anyone's privacy or anything I just need Someone to talk to who has a service dog. Information is helpful Thank you for y our time
I'm on a 6 hour bus trip, in agony with my EDS and this is a fantastic video with some tricks for my next journey. Thanks! ☺
ReLeaf neck pillow. With my EDS related cervical spine issues the ReLeaf is AMAZING. I use it for air and car travel. After 5 cervical fusions it's supportive, light, and well sized
I really enjoy my neck pillow. I feel like it makes all the difference
Hi Jacquie, thanks for the great tips! Definitely going to buy a converter for my heating pad. Where did you get your pink top? I love it!
Thanks for sharing! I’m starting to look into more and more tools to help my chronic pain. I love the heating pad and adapter!
I use a sheepskin on seats. It’s cushioning and provides either warmth or cooling if needed. I’ve found that natural fibers like wool, cotton and linen help regulate my body temperature better than synthetic fabrics. Electric coolers are great too. We got one from Amazon. Just plug into the car and it keeps things cool. It also plugs into the wall with the adapter it comes with. I’ve used mine for 4-5 days at a time.
We do 3 day road trips from northern New England to Florida once’s a year. The stress of it is also hard and normally aggravates my MCAS. On top of GP challenges and body pain.
Great video, Jaquie! xxxxx
We call those handles oh S&#t handles. I have finally been approved for a port so I'm definitely buying the seatbelt cover and will get the car converter to bring my heating pad. I can't go even a half an hour in a car without getting more pain and having to stretch ext. This has been soo helpful. Thank you!!!
I definitely don't have nearly as much pain as you do, but I feel like a lot of this would be helpful for me traveling with endometriosis pain, scoliosis, and Celiac disease.
If you go camping in the future, I'd love to see your take on camping with chronic pain/illness/restrictions
Road trips with celiac is hard, just recently got diagnosed before a 23 hour car time trip. 😥
Memory foam pillows. Water to keep me from vomiting and the seasick bracelets are life savers for me.
We call them the Dammit Handles! My husband used to grip it for dear life when I was driving, I think he's secretly happy I can no longer drive :)
Hey i found a video of you and Judd reuniting after deployment. Would you like a link to it
Do you happen to know the size of your converter that handles your heating pad? I bought one and it didn't work for my pad. I don't think it had enough power (or something). Figured I'd ask before I go out and buy another one.
Your explorer is a much safer vehicle as well. I've seen accidents with Rav4's, not pretty. Glad you were able to go on your trip and visit family.
Sometimes you need an inverter not a converter
"Oh crap handle" and "carbage"! Love the terms you developed 😂
Well to be honest, "oh crap handle" derives from Judd's more... colorful... terminology for it 😂 (Oh s*** handle)
Chronically Jaquie Lol! You two are great.
I agree...they make the cutest...best couple!!! Harlow enriches both their lives.
Does anyone have any tips for keeping medication/nutrition supplements cold during a looooong road trip? I am trying to find a better way than a typical cooler. I’m so worried about water leaking into meds and the extreme cold from ice aggravates a lot of my conditions.
StillSurviving You can get coolers that plug in to the car like a fridge, maybe you could find one that would work for you? They don't need ice in them but I'm not sure what temprature they usually go to.
Terri M
that’s a great idea, thank you!!
I call them "oh shit handles" LOL!!!
These are all great tips. I am waiting for my brave soles blanket to get delivered but I think it is going to be amazing for hospital stays and trips...
I remembered that you really like aquariums! I was wondering if you have ever been to Clearwater Aquarium?
I got my weighted blanket last week and am LOVING it. I may have to get a lap pad for travel. I’ve been using a buckwheat pillow. I got my blanket during the promo you had when you got your blanket. Thank you❣️ 🐾💖🐾💖🐾
Any suggestions for a heating pad for airline travel? I love your idea for the converter for the car. I plan on buying one.
Yvonne Kass I don't fly but Amazon has USB heating pads that you could use a portable charger to power during flights if there are not USB charging ports on planes.
Did you use your neck AFO's on the way back?
You’re so incredibly inspiring. You’ve literally changed my life. Thank you so much for being you!!💕
Did you used to use a neck brace for longer distances in the car?
When did Hippo get her drivers license? 😃
I have car slippers for long drives because the AC really affects the joints in my feet and ankles 👍
I LOVE That you said "conquer roadtrips "! That handle is something i wont say here lol and sometimes i use it to not slide. Sorry if this is personal, but can you feel your bum? I can't so my dad usually turns off the "butt warmer".
Jaquie, I find these types of videos very informative. You speak so well and the information that you share on your chosen topic is complete & concise. And,of course, you also have first hand experience and can share what has or hasn't worked for you. Great job!!! 🤗❤️
I love your channel!😁
I have the some heat pad I love love it.
The vibration of the car really sets my MCAD off. I have tried some stuff but putting the wheelchair cushion on the chair does help a little. Doesn't eliminate it entirely but every little bit helps.
I might need to make my own carbage can 😂😂
Where did you get your flamingo pjs? They are so cute and I want a pair!!
Walmart for SEVEN BUCKS best deal ever!
Jaquie they have pink zebra pajamas at Target!
Hi , I’m going through a service dog program and the lady said these following dogs would fit my needs which one would you pick:
German Shepherd
Labrador retriever
Labradoodle
Golden retriever
St brunard . Also I have
A lot of the thing you do such as P.O.T.S ( Postural orthostatic tachycardia syndrome)
Bartonella
E.D.S (Ehlers-Danlos syndrome)
M.C.A.S (Mast cell activation syndrome)
Epilepsy
Fibromyalgia
C.R.P.S (Chronic regional pain syndrome)
C.I.R.S (chronic inflammatory response syndrome)
Hashimotos
Vascovagal presyncope
And a few other little things.
ES 5689 I’d say go with labradoodle or golden retriever:)
I am partial to golden's ;D But honestly you need to choose based on your needs and the dog's specific temperament. I would talk more with your doctor and organization, they will know best :) Sorry I cannot help more but I am not as close to the situation as they are and I do not want to mislead you. I do, however, want to wish you good luck!
I recommend a Labrador or a Golden Retriever. They are the most loyal and friendly dogs. Also some people are scared of German Shepherds in public.
German Shepherds can be really mentally and physically demanding. That in mind, I would recommend a Golden Retriever or Labrador, considering the Doodles I've met are also quite energetic! However if you have a lot of issues with allergens, even though it's not on the list, a pure bred Poodle might be a good choice.
St. Bernards are prone to drooling and they are MASSIVE compared to those other breeds. Not to mention the grooming! I do think it really depends on what you can and can't manage with a dog as well, like exercise and grooming.
Chronically Jaquie thank you ! We have been researching for about a year. Lots of great information under my belt lol
Great tips. I’m going to get the heat blanket charger converter.
One of the best hacks I have for the car honestly!
Chronically Jaquie I never thought about going ahead and traveling more on the first day since our bodies pay for it on the second day.
I didn't even know the charger converter existed! I'm going to get a few things you shared.
This video was so incredibly helpful!
Thank you for these!
Cool love the heating pad. That might be a good idea to think about getting on our next road trip. By the time we got back from GA the weekend before last. I was in so much pain. Oh and I have a garbage bin also Jaquie. 🌸
Thank you for sharing! We go on long drives, sometimes a few times a week for doctor appointments and I have a lot of chronic pain because my EDS. Happy Harlow! So cute! Jaquie I hope your having a good day. And thank you for putting the links for those things. Thats very helpful!Continued prayers for you all! Also Jaquie why dont you wear Vogmask anymore? And for the Cambridge how is the sizing? Do you wear children size or M (adult)? Trying to figure out sizing for me.
My immunologist said I do not need it anymore (except places like hospitals, ERs, etc) because my IgG is in normal levels thanks to IVIG. I hate wearing it because it is uncomfortable so I am happy to be without a mask. I think I am a medium but not totally sure.
Chronically Jaquie Happy your levels are normal! Yay IVIG! Thank you for responding!
Waiting for the day w self driving vehicles as the norm..... Altho probably not in my lifetime. Altho I can drive, prefer not to due to health issues. Lucky you do have folks that can drive you! Cars....a necessary evil. ;)
First and you are so strong keep it up to what you and you will be a lot stronger then ever I love you and you inspire me
Harlow is so cute!!❤️❤️❤️
O crap handles haahaha
Do you have the seat cooler?
No, but Judd really wants one lol! We did not know about them when we bought this car but we had it in the rental car in Dallas. He loved it!
Hi!! I’m an avid watcher of you guys and I hope you continue to live a fantastic life!! Love you ❤️💛❤️
You're so cute!, i like you sweetie
Harlow drives