I have Ehlers Danlos as well, and most of the same chronic illnesses, 😂. Thank you for sharing how you're going through getting your wheelchair, I'm starting to need one as my hips keep dislocating and I have Diastasis pubic symphysis, and with my POTS, CF, and scoliosis, it's tough going for walking long distances 😅. A lot of people I know sort of consider wheelchairs as a last resort, and it's nice to be reminded by someone who understands that it's a tool 🙂
I made a Custom Wheelchair playlist so all updates will be there, in one place. :) So thankful my videos made you happy, I think WCs can be great tools!
I have symptoms of Hypermobile EDS and POTS yet my doctors won’t look into it. I get tired so easily and my joints constantly hurt and make me trip, as a dancer it’s not really fun to not be able to rely on your body to do its job.
Justed wanted to say that I had a rough day today and I was feeling really down. But then I thought of you and how you find something positive in every day and just something to be grateful for and that really helped me! So thank you for that! ♥️
OMG I was so thrilled that you already got a wheelchair based on preview but that was just your friend's :D It sucks that it has to take that long. Keep moving forward, we all believe in you!
Hi Jaquie, you are such an inspiration for me to continue my art!! Although you have chronic illnesses and have to use walkers/wheelchairs you still have to do what needs to be done and you don't let your illnesses weigh you down and keep you from doing what's important. I just started watching your videos recently but I absolutely love how much you live life like a healthy person. You don't sit around and just hate life you make the best of it!! I'm sure you see comments like this all the time but I just wanted to voice how I feel. Whenever I'm down I just watch your videos and they always make me smile and laugh and squeal at how cute Harlow is.. Thank you Jaquie!
You looked so much better after Judd came home from lunch. Your love for each other just shines through! I have been thinking about a walker/wheelchair too. I see it as a tool, I can walk, but also experience muscle fatigue and cramping with temperature extremes. More blood tests next week (I'm afraid it's either Muscular Dystrophy-ALS or Multiple Sclerosis, but I am going to ask about POTS), and we'll see what my doctor says. I hope you can get a motorized chair! You need it with the pain of POTS!!
Nice that your friend came over and you got a chance to try his wheelchair. You seemed like you could handle that size. And Harlow was awesome when you were in the chair. Oh no! Sorry to hear that you had a bad day with the heat. Sending prayers!
So glad you could sit in your friends chair! I'm really excited for you to get another tool! I'm not positive but every chair we looked at you could get in pink! Also my chair and power wheels were covered 100% surprisingly. We had met our max out of pocket that year which helped. There would have been no way we could pay for the chair if it wasn't covered. So holding out on lots of hope that everything gets covered for you. I also was bedridden for year and a half so my entire body was extremely weak. So my evaluation showed how weak I was which helped with the power wheels getting covered. I would also ask about SmartDrive. I think it's a little less expensive than my Alber wheels. Sending lots of healing thoughts.
Hey Jaquie, just wanted to thank you for teaching me to never give up and to never judge any book by its cover. You inspire all of your viewers so thank you so much. 💕
Best of luck with the wheelchair process. We made the honey garlic stirfry the other night. We're on a family vacation in Boca Grande, so we had to triple or quadruple the recipe. My mom didn't follow the directions correctly for the sauce, and we set off the smoke alarms since the vacation house doesn't have an exhaust fan, but I still think it came out pretty well.
I definitely agree on them being a tool not a last resort! I was too worried to get a rollator before I came across your channel but I got up the courage! I was so anxious about using my rollator at first but I can do more and get further and have a seat, and my POTS specialist thought it was a great idea too. Your vlogs really make a difference!
The apple version of the emoji you used in the title has the person pushing the wheelchair really fast, like they're in a race or something! :D I love the "battles" over who gets to do the outro XD
Lol.... You are so lucky to have Judd ... I love it when he stirs you up Jaquie and makes you laugh and smile... well actually he makes me laugh too, so nice to have someone to brighten the otherwise not so nice days when you are feeling poorly. Hope tomorrow is a better day for you. Hugs from Cairns Australia.. Yep gets hot here too ...lol
Hi from a SD team in NC! EDS & dysautonomia here, not to mention tube feeds 20/24. I also use my WC any time I'm out. Luckily my apt isn't large because it's too tight to manoeuvre a chair inside. Living alone, I have to take Kima to walk, something I can't do from the chair. Other than that, having wheels has made a HUGE difference in my quality of life. I hope yours will, too. I'm sure you've been told, but in case you haven't, expect it to take some time to be able to push yourself any significant distance or up any kind of incline. After awhile, you'll realise suddenly that you've made a lot of progress!! Also, EVERYONE flips at some point, it from goofing around or from hitting a crack, rock, or other obstacle. It can be helpful to know what it feels like and how to handle it when you're alone. I'm glad you have Julian; he's bound to be able to help you (Judd, too) learn how to deal with almost any situation you'll encounter. One suggestion - GLOVES!! I've found that those designed for BMX work best as they have grips on the inner part of the thumb. (Picture holding the handlebar of a bike) There are some decent VERY affordable ones through Amazon. And, yes, you can find them in pink, which is the best colour ever, if you ask me. ;-) If you ever have any questions about juggling being a WC & SD user, or if you just need to vent, I'll be glad to help. Enjoy the remainder of the weekend!~~Charli (and KimaBear, too, who sends a cold wet nose to Harlow)
I discovered your channel a couple days ago and I am in love! You guys are such a strong family and your positivity inspires me. I hope you get some relief from your pain soon!
It took me a second to warm up to your vlogs but now I really enjoy watch your videos and I've been watching some of your old ones. Love you both! You guys are awesome and inspire me so much ❤️
I really enjoyed this video! I love getting an insight into your daily life. You are such an inspiration for me to get a hand on my chronic illnesses and to use all the tools I can to help 👍🏻 See you tomorrow!
People judge. It's human nature I guess. So, Jaquie, keep doing what you are doing to help inform people about service dogs, wheelchairs, etc. What you are doing helps build a more empathetic public, person by person. There will always be negative responses to things people don't truly understand, so we just make the best of it and try not to take things too personally. Love your vlog.
I love this wheelchair! I have a quicke. It is a mix between this one and a transport chair. I first got it when it I was in middle school so it made since at the time for it to be more like a transport chair. Being 23 now and trying to be more independent the chair is really clunky for me handling by my self but the tylife brand might be a solution for the future! Sorry you're not feeling that great but I guess that's the thing with having POTS in the summer. I live in Texas so the heat isn't helping with my POTs either. On top of that I think I have a sinuses infection. I haven't been to my allergist since I have been diagnosed so today my adventure is to teach my allergist about POTS!
Jaquie your videos make me smile each day , & each morning I can't wait to watch your vlogs. You're such an amazing person who smiles each day and is so thankful. I'm so thankful for God putting you in my path. God bless you and your beautiful family. Even when something is bad you always smile and stay positive 💗 Thanks Jaquie
Amen. Chronic illness flare ups are rotten. I rode with my son to drop him off at work and was coughing and chocking on the mucus drainage. I wasn't that bad yesterday but today was a mess. I'm in Arizona so I understand about the heat. I do better in the heat normally my allergies and asthma improve. This year though, it's been bad. I have been on medical leave since April. I don't like it, but I am slowly getting better.
Have you looked into a cooling vest? There are some with water that run through tiny tubes against your skin to help with heat intolerance. I think they were created for people with MS but that could be another tool to keep you safe. The brand is coolshirt systems if you are interested.
If I saw you in public, Jaquie, I would give ya a big hug, with your permission, of course. I can't explain here how much you mean to me, but know that you mean so much to all of us! 💕
Ask about wijits if your getting a manual....google wijit wheelchair..they make using a manual chair so much easier on the arms n backs...they are covered by most insurance..
Something that has always helped my family (we're all from Florida) with the heat is tinting you car windows. It can help keep the car cooler when it's idle, because it doesn't allow as much sunlight to come in.
I completely agree with your reasons for getting a wheelchair. That's my reasoning too. I use a TiLite ZRA to help with POTS and ME/CFS. *Another potential tip for keeping the feeding tube out of the wheels, when I'm hooked up to my IV saline, I hook the tubing over the back of the wheelchair between me and the handle if that makes sense. Clothing guard helps for sure as well.
Hello Jaquie, have you and Judd ever thought about putting window tint or Solar Plexus on your SUV? It might help against the heat a little bit, and it could definitely be beneficial to Hallow in the back. Solar Plexus is kinda like hard plastic that you can remove too.
I bought a cooling vest this past year to help with my pots related to EDS. I have been happy with how much it helps. They are a bit expensive between $60-100 but it has been worth it for me, so I can brave the heat better. It might be worth trying. Blessings!
Jaquie, sorry you passed out😢I use a wheelchair for severe POTS/Dysautonomia that causes me to pass out several times a day. I'm in process of getting a new wheelchair and they are getting me something called a"smartdrive". It may be worth looking into. it's a motor that attaches to the rear of a light weight manual chair and only weighs 15lbs. it's controlled by a Bluetooth watch. Transport is easier because you can lift the motor and wheelchair separate. Hope maybe that will help a little! Thanks for sharing your life with us.
The power assisted wheels make the chair a bit heavier when folding and putting it in the car trunk. You could get the guard or use the strap part where your infusion tube goes then it wouldn't be so close to the wheel
Tip for heat in cars: Buy shades/blinders that go on the side windows and block the sun's heat out. They are fairly cheap, trust me they will cool you SO MUCH. Also you can get the sunblocker/reflector that goes on the front windshield so that when you come back to the car, it's not as hot. Lets say you go into walmart or a restaurant, when you come back, the car will be much much cooler than if you didnt have the sun reflectors on. They will help SOOO MUCH. Thumbs up so they see this, it will help her tremendously.
Hey Jaquie, I have a question. I have been training my dog a little, but I can't get him to sit pretty. He just won't lift his feet. Do you have a trick to get him to lift his feet? He is a golden Labrador. - Sofie 👍🤓🐕
It is longer distance that I find issue with manual or trying to get over uneven services, inclines or declines. I can't get round a shop without struggling with a manual so hope you can get power assist. 🙌
Was in Florida last year the heat was really bad,I understand the car gets really hot even with a/c on and pets can over heat so quickly,so glad Harlow is ok:)she is beautiful and you can see she loves you both so much,she is such a blessing to you.
it's awesome that julian can give you info on your chair! i really wish my insurance covered a custom wheelchair because my nerve pain is a ton worse after using my chair, even though it also helps a lot. does julian have a youtube channel too?
Just gotta say you're awesome! I have been subscribed for a bit but I don't often comment. Just want to say hi and keep up being awesome! Julian seems super cool, I hope he's in future vlogs or has his own channel.
Does Harlow know how to behave differently when her vest is on vs. off, or does she still try and perform her tasks when her vest is off? And also, does she greet people differently if they are in a walker/wheelchair can if they are standing up?
You still look great with no sleep! On the chair, DO NOT LET SOMEONE MAKE YOU UNCOMFORTABLE. When I made the decision to use my chair instead of walking, I knew it was the best for me, not because I gave up on walking.
Some people are saying I'm setting myself up for failure with POTS, I totally disagree. My illnesses are progressing and it is time for a new tool. I will still always do my best. I can be my best self with a WC. :)
Chronically Jaquie I definitely don't think you are setting yourself up for failure with POTS. I pass out way way less since my chair. I can go long distances and enjoy life much more without the dizziness and feeling light headed. You definitely know your body best and will find a good balance of exercise and using the chair.
Chronically Jaquie thank you so much for saying that and this video!! I've been using a cane for a few years now and my illnesses are getting worse and it's getting a lot harder to walk n stand even w the cane. tbh a walker prob would've been best in the beginning but I just didn't want to get one before 30yrs old I already had a hysterectomy at 25 😞 it's hard! I'm 32 now and most days I'm in bed it's very difficult n painful to do much else. I want to start walking more but I just dnt feel I can w just my cane. at supermarkets I have to get a cart asap or on very bad days use a chair there. I've been looking into walkers ect n I want to thank you bc your videos not only have been helpful but inspiring n encouraging. I still battle myself w the well maybe I just need to push harder or if I switch I'll never go back but I'm trying to figure it out still. thank you again so much n I hope you get the wheelchair you need that they cover everything n quickly! 😀❤
You're the ONLY person who can say if you need it or not. Your safety is the most important thing. People don't realize how DANGEROUS it can be to walk with some conditions. I was at the mall last weekend with my husband. Well unexpectedly I got some shooting pains in my abdomen on top of the excruciating pain that was already there... I could barely keep it together IN the wheelchair. Imagine if I had been walking?! (and yeah, I shouldn't have gone out, but I was being stubborn)
Thanks for sharing, I've been in a w/c for 11 yrs I can do almost everything for myself. May 9th 2007 I fell 17ft and cracked L1 vertebrae. I just got à new w/c last week it looks just like yours. It's 96 degrees in Tennessee and the humidity is kicking butt and it's just June so it's not cooling down till October.
Oh Judd made me laugh out loud with the comment "we have lots of fans out there!" Good luck Jaquie with the wheelchair approval. Wow that is a longer than I thought at 3 to 6 months. Praying it is faster for you!!
Gosh I just absolutely admire you!!! You're incredibly inspirational and you've actually helped me with my multitude of chronic illnesses (especially in your how to get answers when you're chronically ill video). Is there any way I could send a gift???
Jacquie i am a fairly new subscriber.. watching your videos makes my day! I am encouraged to live life to my fullest and enjoy the good and the bad about life.. Thank you so much!
Chronically Jaquie I've been looking into diff ones, This is one I'm thinking abt, not nesc this one but this type. I really get sick w the heat and it makes all my illnesses so much worse. unfortunately right now I just use the cooling towels which do help some. I'm not looking forward to this week! I hope it stays cool enough by you n that you can find a vest to help you! ❤
Chronically Jaquie I've been looking into diff ones, This is one I'm thinking abt, not nesc this one but this type. my husband actually wants to build me one and even in the reviews someone did that. but this just gives you an idea of the type bc the freezer pack ones aren't the most helpful for me either. www.amazon.com/gp/aw/d/B01DLSBIB2/ref=mp_s_a_1_30?ie=UTF8&qid=1501341652&sr=8-30-spons&pi=AC_SX236_SY340_QL65&keywords=cooling+vest&psc=1 I really get sick w the heat and it makes all my illnesses so much worse. unfortunately right now I just use the cooling towels which do help some. I'm not looking forward to this week! I hope it stays cool enough by you n that you can find a vest to help you! ❤
All the thumbs up for JUDD!👏 I know he'd pull the pickem up truck up to the house if he could (or your car). I think i look like Tommy from rugrats when i walk.😂 For your tube, can you maybe find a tape and tape it to your side?
I live in a hot area and also have POTS. What helps me is my cooling vest (which my POTS doctor got me for christmas; she's amazing) and basically its a vest with a ton of pockets that you put these ice packs it come with in. While it's not the best looking vest, it really helps because I don't have to hold ice pack all over me while the blood rushes down my hands. I just thought it would be good to mention what helps me in case that might help someone else with combating their illnesses :)
I understand how heat can get to you Since I live in a desert. If you are able to handle a cooling cloth or a bead cooling necklace it may be beneficial. They're so popular down here where I live but I know some areas they're more unfamiliar with them. If you check a sporting section in Walmart or other stores ask for cooling cloths. They stay wet for a while and are really nice when you're over heating because they are rather large so they can take up a lot of areas. If they aren't cool enough rubber bands for each end and ice you can make it into an ice cooling cloth, it's what I use to do at one of my old jobs because there was never any AC during 115-degree weather and the inside of the building was 120 at one time. If you want another method there are beads that absorb water that hold for HOURS at a cool temperature.
I have CP and i can walk a little but i really appreciated this vlog because i'm looking into a chair i can push myself and like you said use it for those long outings where i want to be self sufficient and that isn't a transfer chair where you have to be pushed and this was really helpful. Then you could choose to teach harlow to Pull maybe if you wanted to my SD never finished learning it but i am trying to reteach him that :)
Thank you, I needed this reminder :) Ihave a complicated illness that effects my vision. I can't handle much light for long, and looking at details is hard, often painful, work. I use a white cane for walking long distances. It is safer and faster, even though I can navigate without it if I work hard at it, but I get dizziness and pain pretty quickly out in daylight looking at things. The white cane really helps because then I'm not straining my sight, I can wear darker sunglasses, and I am fresh and comfortable for looking at things when I really need to.
Blowdryers are a hub for bacteria, I don't recommend using them. They blow hot air and once your done, the higher than room-temp environment is a great catalyzer for bacterial growth, and once you activate the blowdryers, it shoots out a wave of hot air and bacteria!!!! Stick with paper towels, if not available just air dry, safer.
I cannot stand blow dries in bathrooms. I was diagnosed with a processing disorder when I was a kid. For some reason I can tolerate my hair dryer but can't stand any bathroom ones. I usually leave with my hands wet or use napkins that I store in my backpack.
I have a TiLite Areo T, with a fold down seat back and removable seat pad. We looked at electric assist wheel, but I cannot lift them. Instead I have light weight wheels with Natural Fit rims and my service dog is training to help propel my 'chair. His harness helps with my balance also. The harness is made by Bold Lead Design, and is completely custom just like my 'chair. It is very expensive, but everyone I know who have one, will not go back to the other harnesses. Having a propulsion aid that gets into the car itself is handy. Due to repeated trauma my function is similar to a high functioning quadriplegic and this set up got me out of a full rehab electric.
I love you guys❤️ You're so awesome and inspiring! I hope the wheelchair is going to help you to get more independent and I don't think you gave up just because you're going to get one!!! Keep moving forward❤️❤️❤️
Yesterday was a bad day for me a transport service denied me to take my service dog with me while out in public withoutmy sd i had anxiety attack no dog to alert and it was awful but when I got home he came directly up to me started nudging me pawing at me and he calmed me down within seconds after I got home and I love your positivity on life and look forward to seeing your videos and you and Judd are so cute together perfect couple and Harlow makes your family complete and I use your just moving forward day by day thank you for being so great and sharing your life with us. And he's not just anxiety alert he's does other stuff too not going to get into that
Have you heard of or used frogg toggs? They're cooling towels that you submerge in water and when they evaporate it gets cold! I'm not totally sure the science behind it, but they really work and last about 4-5 hours. They're super useful!
Maybe look into the smart drive. I have heard that the wheels add more weight to the chair but a smart drive hooks on the camber tube and while it is 25lbs it is so much easier for me to load them separate. But everyone is different :) taking the wheels apart to load can be a pain if it rains or if I'm really tired so I really love the smart drive and I had arm and hand weakness as well as joint issues so I qualified under that condition. Sorry for the info rush, I had a very long and hard time getting my chair and learned a lot.
Have you ever thought about training two-four more service dogs and getting them to pull your chair like a sled? I've thought about it for mine when I end up there.
I have the Tilite Aero Z in hot pink!! I absolutely love it, and its amazing, my chair has a special back on it so it can support my sulfite more (my shoulders are horrible bc of eds) so it is around 20 pounds instead of 18, but
Just think! You might be able to go on grocery trips by yourself now if you discover that you need something or don't want to wait for someone to go with! Harlow and your wheelchair make it possible now because you don't have to worry about the standing and walking!!!!! I'M SO HAPPYYYYY
What are use frustrating that so many like most people seem to think that seems from in a wheelchair and they get the idea from a short conversation that I wasn’t as a child: that I was in a wheelchair accident and I have a spinal-cord injury. Not everybody in a wheelchair is a paraplegic! Especially if you can walk a little bit it is so hard to describe to other people (well it’s not hard to describe, but it can be hard for them to understand the whole situation)
your friend said he had a nero disorder too. I have MS is that what he has. I use a wheelchair to get around when that is going to be a lot of walking because my legs get very weak.
I get the same question about why I live in Israel, where it averages 95+ in the summer (which is around 6 months of the year). Same answers pretty much
I have a TiLite (I live in Germany) it was imported from the USA for me and I LOVE it. It's such a good, strong brand. I'm in a wheelchair for 9 years (I'm 27) and the opinion, that the wheelchair is the last resort is awful because having no wheelchair would tie me to the bed - "awesome" imagination (irony off). I also have an g-tube button - if you need any photos just leave a comment. I have kind of a spoke guard (it's a typical wheelchair component here) and you can put on a velcro to secure your feeding tube. Keeping my fingers crossed for a positive wheelchair examination!
I can always tell how jaq is doing by her eyes
I get told that a lot, apparently my eyes give away how I am feeling.
Got that right! ☺️ Love ya Jaquie
Jenna M as they say, the eyes are the window to the soul
I have Ehlers Danlos as well, and most of the same chronic illnesses, 😂. Thank you for sharing how you're going through getting your wheelchair, I'm starting to need one as my hips keep dislocating and I have Diastasis pubic symphysis, and with my POTS, CF, and scoliosis, it's tough going for walking long distances 😅. A lot of people I know sort of consider wheelchairs as a last resort, and it's nice to be reminded by someone who understands that it's a tool 🙂
I made a Custom Wheelchair playlist so all updates will be there, in one place. :) So thankful my videos made you happy, I think WCs can be great tools!
You have CF too!?!? That in itself is a daily struggle that many can't imagine. Stay strong.
I'm in your boat! You're not alone!
I have symptoms of Hypermobile EDS and POTS yet my doctors won’t look into it. I get tired so easily and my joints constantly hurt and make me trip, as a dancer it’s not really fun to not be able to rely on your body to do its job.
Justed wanted to say that I had a rough day today and I was feeling really down. But then I thought of you and how you find something positive in every day and just something to be grateful for and that really helped me!
So thank you for that! ♥️
That is wonderful! This makes me so happy (:
Silke Punt Same! Love you Jaquie! (Sorry if I spelled it wrong)
OMG I was so thrilled that you already got a wheelchair based on preview but that was just your friend's :D It sucks that it has to take that long. Keep moving forward, we all believe in you!
Oh sorry, lol! Did not mean to fool anyone :P
I did too! I thought it was a trial chair. :)
Hi Jaquie, you are such an inspiration for me to continue my art!! Although you have chronic illnesses and have to use walkers/wheelchairs you still have to do what needs to be done and you don't let your illnesses weigh you down and keep you from doing what's important. I just started watching your videos recently but I absolutely love how much you live life like a healthy person. You don't sit around and just hate life you make the best of it!! I'm sure you see comments like this all the time but I just wanted to voice how I feel. Whenever I'm down I just watch your videos and they always make me smile and laugh and squeal at how cute Harlow is.. Thank you Jaquie!
I am usually able to read all my comments, not always able to reply, but they each are SO meaningful to me. Thank you SO much for your support!
You looked so much better after Judd came home from lunch. Your love for each other just shines through! I have been thinking about a walker/wheelchair too. I see it as a tool, I can walk, but also experience muscle fatigue and cramping with temperature extremes. More blood tests next week (I'm afraid it's either Muscular Dystrophy-ALS or Multiple Sclerosis, but I am going to ask about POTS), and we'll see what my doctor says. I hope you can get a motorized chair! You need it with the pain of POTS!!
Nice that your friend came over and you got a chance to try his wheelchair. You seemed like you could handle that size. And Harlow was awesome when you were in the chair. Oh no! Sorry to hear that you had a bad day with the heat. Sending prayers!
So glad you could sit in your friends chair! I'm really excited for you to get another tool! I'm not positive but every chair we looked at you could get in pink! Also my chair and power wheels were covered 100% surprisingly. We had met our max out of pocket that year which helped. There would have been no way we could pay for the chair if it wasn't covered. So holding out on lots of hope that everything gets covered for you. I also was bedridden for year and a half so my entire body was extremely weak. So my evaluation showed how weak I was which helped with the power wheels getting covered. I would also ask about SmartDrive. I think it's a little less expensive than my Alber wheels. Sending lots of healing thoughts.
"we have many fans"
"yeah we have some in the guest room"
jaquie is terrible with sarcasm😂
Lol I really am! It's my autism :P
Hey Jaquie, just wanted to thank you for teaching me to never give up and to never judge any book by its cover. You inspire all of your viewers so thank you so much. 💕
Also I want to be a patron but my family can't afford it at the time due to the amount of school supplies I need this year. 😔❤️
Best of luck with the wheelchair process.
We made the honey garlic stirfry the other night. We're on a family vacation in Boca Grande, so we had to triple or quadruple the recipe. My mom didn't follow the directions correctly for the sauce, and we set off the smoke alarms since the vacation house doesn't have an exhaust fan, but I still think it came out pretty well.
I definitely agree on them being a tool not a last resort! I was too worried to get a rollator before I came across your channel but I got up the courage! I was so anxious about using my rollator at first but I can do more and get further and have a seat, and my POTS specialist thought it was a great idea too. Your vlogs really make a difference!
Any tool to help fight chronic illness!! Love you Jaquie! ❤️
I have multiple sclerosis and can't imagine a life without a wheelchair anymore. ♿ Greetings from Germany ❤ Love watching your vlogs 😍
The apple version of the emoji you used in the title has the person pushing the wheelchair really fast, like they're in a race or something! :D
I love the "battles" over who gets to do the outro XD
Lol.... You are so lucky to have Judd ... I love it when he stirs you up Jaquie and makes you laugh and smile... well actually he makes me laugh too, so nice to have someone to brighten the otherwise not so nice days when you are feeling poorly. Hope tomorrow is a better day for you. Hugs from Cairns Australia.. Yep gets hot here too ...lol
Hi from a SD team in NC! EDS & dysautonomia here, not to mention tube feeds 20/24.
I also use my WC any time I'm out. Luckily my apt isn't large because it's too tight to manoeuvre a chair inside. Living alone, I have to take Kima to walk, something I can't do from the chair. Other than that, having wheels has made a HUGE difference in my quality of life. I hope yours will, too.
I'm sure you've been told, but in case you haven't, expect it to take some time to be able to push yourself any significant distance or up any kind of incline. After awhile, you'll realise suddenly that you've made a lot of progress!!
Also, EVERYONE flips at some point, it from goofing around or from hitting a crack, rock, or other obstacle. It can be helpful to know what it feels like and how to handle it when you're alone. I'm glad you have Julian; he's bound to be able to help you (Judd, too) learn how to deal with almost any situation you'll encounter.
One suggestion - GLOVES!! I've found that those designed for BMX work best as they have grips on the inner part of the thumb. (Picture holding the handlebar of a bike) There are some decent VERY affordable ones through Amazon. And, yes, you can find them in pink, which is the best colour ever, if you ask me. ;-)
If you ever have any questions about juggling being a WC & SD user, or if you just need to vent, I'll be glad to help.
Enjoy the remainder of the weekend!~~Charli (and KimaBear, too, who sends a cold wet nose to Harlow)
I discovered your channel a couple days ago and I am in love! You guys are such a strong family and your positivity inspires me. I hope you get some relief from your pain soon!
It took me a second to warm up to your vlogs but now I really enjoy watch your videos and I've been watching some of your old ones. Love you both! You guys are awesome and inspire me so much ❤️
I really enjoyed this video! I love getting an insight into your daily life. You are such an inspiration for me to get a hand on my chronic illnesses and to use all the tools I can to help 👍🏻 See you tomorrow!
People judge. It's human nature I guess. So, Jaquie, keep doing what you are doing to help inform people about service dogs, wheelchairs, etc. What you are doing helps build a more empathetic public, person by person. There will always be negative responses to things people don't truly understand, so we just make the best of it and try not to take things too personally. Love your vlog.
I love this wheelchair! I have a quicke. It is a mix between this one and a transport chair. I first got it when it I was in middle school so it made since at the time for it to be more like a transport chair. Being 23 now and trying to be more independent the chair is really clunky for me handling by my self but the tylife brand might be a solution for the future!
Sorry you're not feeling that great but I guess that's the thing with having POTS in the summer. I live in Texas so the heat isn't helping with my POTs either. On top of that I think I have a sinuses infection. I haven't been to my allergist since I have been diagnosed so today my adventure is to teach my allergist about POTS!
Jaquie your videos make me smile each day , & each morning I can't wait to watch your vlogs. You're such an amazing person who smiles each day and is so thankful. I'm so thankful for God putting you in my path. God bless you and your beautiful family. Even when something is bad you always smile and stay positive 💗 Thanks Jaquie
Thank you so much for the support! I'm also a person of faith and truly believe he intricately arranges things for us right when we need them.
I recently came across your videos and now I watch them daily. You inspire me and my day is Always better after watching you!
Amen. Chronic illness flare ups are rotten. I rode with my son to drop him off at work and was coughing and chocking on the mucus drainage. I wasn't that bad yesterday but today was a mess. I'm in Arizona so I understand about the heat. I do better in the heat normally my allergies and asthma improve. This year though, it's been bad. I have been on medical leave since April. I don't like it, but I am slowly getting better.
All the babies in my family learned to stand using me as a way to pull up. My chair was very popular lol
Have you looked into a cooling vest? There are some with water that run through tiny tubes against your skin to help with heat intolerance. I think they were created for people with MS but that could be another tool to keep you safe. The brand is coolshirt systems if you are interested.
I have one but it does not help much.
If I saw you in public, Jaquie, I would give ya a big hug, with your permission, of course. I can't explain here how much you mean to me, but know that you mean so much to all of us! 💕
Awe thank you!
Ask about wijits if your getting a manual....google wijit wheelchair..they make using a manual chair so much easier on the arms n backs...they are covered by most insurance..
Thank you for the tip! :) I will look into this for sure.
Something that has always helped my family (we're all from Florida) with the heat is tinting you car windows. It can help keep the car cooler when it's idle, because it doesn't allow as much sunlight to come in.
We have been thinking about this!
I completely agree with your reasons for getting a wheelchair. That's my reasoning too. I use a TiLite ZRA to help with POTS and ME/CFS. *Another potential tip for keeping the feeding tube out of the wheels, when I'm hooked up to my IV saline, I hook the tubing over the back of the wheelchair between me and the handle if that makes sense. Clothing guard helps for sure as well.
Jaq your channel has 4.5 million total views 😍 awareness to the max!!! 4️⃣0️⃣0️⃣0️⃣0️⃣0️⃣0️⃣
Hello Jaquie, have you and Judd ever thought about putting window tint or Solar Plexus on your SUV? It might help against the heat a little bit, and it could definitely be beneficial to Hallow in the back. Solar Plexus is kinda like hard plastic that you can remove too.
I bought a cooling vest this past year to help with my pots related to EDS. I have been happy with how much it helps. They are a bit expensive between $60-100 but it has been worth it for me, so I can brave the heat better. It might be worth trying. Blessings!
Jaquie, sorry you passed out😢I use a wheelchair for severe POTS/Dysautonomia that causes me to pass out several times a day. I'm in process of getting a new wheelchair and they are getting me something called a"smartdrive". It may be worth looking into. it's a motor that attaches to the rear of a light weight manual chair and only weighs 15lbs. it's controlled by a Bluetooth watch. Transport is easier because you can lift the motor and wheelchair separate. Hope maybe that will help a little! Thanks for sharing your life with us.
I would love something like that, I hope I qualify!
Congrats on 50K! You deserve every one!
The power assisted wheels make the chair a bit heavier when folding and putting it in the car trunk. You could get the guard or use the strap part where your infusion tube goes then it wouldn't be so close to the wheel
Tip for heat in cars: Buy shades/blinders that go on the side windows and block the sun's heat out. They are fairly cheap, trust me they will cool you SO MUCH. Also you can get the sunblocker/reflector that goes on the front windshield so that when you come back to the car, it's not as hot. Lets say you go into walmart or a restaurant, when you come back, the car will be much much cooler than if you didnt have the sun reflectors on.
They will help SOOO MUCH. Thumbs up so they see this, it will help her tremendously.
You're amazing Jaquie. I learn so much from your videos!
Hey Jaquie, I have a question. I have been training my dog a little, but I can't get him to sit pretty. He just won't lift his feet. Do you have a trick to get him to lift his feet? He is a golden Labrador.
- Sofie 👍🤓🐕
Look at my training tutorial playlist, it is in there :)
Chronically Jaquie Thank you
It is longer distance that I find issue with manual or trying to get over uneven services, inclines or declines. I can't get round a shop without struggling with a manual so hope you can get power assist. 🙌
Omg so happy that your subs are rising! I've been subbed since 20k. I believe you'll reach 100,000 subs (a new milestone) ☺️💕❤️
Was in Florida last year the heat was really bad,I understand the car gets really hot even with a/c on and pets can over heat so quickly,so glad Harlow is ok:)she is beautiful and you can see she loves you both so much,she is such a blessing to you.
it's awesome that julian can give you info on your chair! i really wish my insurance covered a custom wheelchair because my nerve pain is a ton worse after using my chair, even though it also helps a lot. does julian have a youtube channel too?
I do not know but he has an IG positivelychilljulian
Chronically Jaquie thanks for your reply! happy to see that i follow him already 😷☺️
Julien is my favorite person ever! He is so wonderful!
Lysander W. Thank you!
You said good Tuesday morning at the beginning of the vlog, but I think you meant Wednesday!
Lol I think you are right!
There are just 2 Tuesday's 😂😂
Just gotta say you're awesome! I have been subscribed for a bit but I don't often comment. Just want to say hi and keep up being awesome! Julian seems super cool, I hope he's in future vlogs or has his own channel.
SereneChaos Thank you!
Hope you sleep better tonight! 💜💜
Does Harlow know how to behave differently when her vest is on vs. off, or does she still try and perform her tasks when her vest is off?
And also, does she greet people differently if they are in a walker/wheelchair can if they are standing up?
Watch my Harlow video for that first Q, and she does not greet people when working. :)
Chronically Jaquie thanks!!!
You still look great with no sleep! On the chair, DO NOT LET SOMEONE MAKE YOU UNCOMFORTABLE. When I made the decision to use my chair instead of walking, I knew it was the best for me, not because I gave up on walking.
Some people are saying I'm setting myself up for failure with POTS, I totally disagree. My illnesses are progressing and it is time for a new tool. I will still always do my best. I can be my best self with a WC. :)
Chronically Jaquie Exactly, so ignore those people. They don't know you. They don't know your body.
Chronically Jaquie I definitely don't think you are setting yourself up for failure with POTS. I pass out way way less since my chair. I can go long distances and enjoy life much more without the dizziness and feeling light headed. You definitely know your body best and will find a good balance of exercise and using the chair.
Chronically Jaquie thank you so much for saying that and this video!! I've been using a cane for a few years now and my illnesses are getting worse and it's getting a lot harder to walk n stand even w the cane. tbh a walker prob would've been best in the beginning but I just didn't want to get one before 30yrs old I already had a hysterectomy at 25 😞 it's hard! I'm 32 now and most days I'm in bed it's very difficult n painful to do much else. I want to start walking more but I just dnt feel I can w just my cane. at supermarkets I have to get a cart asap or on very bad days use a chair there. I've been looking into walkers ect n I want to thank you bc your videos not only have been helpful but inspiring n encouraging. I still battle myself w the well maybe I just need to push harder or if I switch I'll never go back but I'm trying to figure it out still. thank you again so much n I hope you get the wheelchair you need that they cover everything n quickly! 😀❤
You're the ONLY person who can say if you need it or not. Your safety is the most important thing. People don't realize how DANGEROUS it can be to walk with some conditions. I was at the mall last weekend with my husband. Well unexpectedly I got some shooting pains in my abdomen on top of the excruciating pain that was already there... I could barely keep it together IN the wheelchair. Imagine if I had been walking?! (and yeah, I shouldn't have gone out, but I was being stubborn)
Yay I was waiting to get a notification saying you uploaded a video, I honestly love your videos so much ❤️
Who's Disney tervis water bottle is that on the coffee table? I absolutely love it and I've never seen it before, it's so cute!
It is Julians (:
Marissa Jaskae It's mine! I got it from a Tervis store in Orlando near Disney but I'm sure you can get them online. Thank you!
Thanks for sharing, I've been in a w/c for 11 yrs I can do almost everything for myself. May 9th 2007 I fell 17ft and cracked L1 vertebrae. I just got à new w/c last week it looks just like yours. It's 96 degrees in Tennessee and the humidity is kicking butt and it's just June so it's not cooling down till October.
Hi! I love watching your guy's new videos.
Oh Judd made me laugh out loud with the comment "we have lots of fans out there!" Good luck Jaquie with the wheelchair approval. Wow that is a longer than I thought at 3 to 6 months. Praying it is faster for you!!
Ahh man it was 107 degrees here yesterday, my car a/c barely gets cold!
I really love your videos! They help me feel better when I am down. Love ya! Stay strong!
Gosh I just absolutely admire you!!! You're incredibly inspirational and you've actually helped me with my multitude of chronic illnesses (especially in your how to get answers when you're chronically ill video).
Is there any way I could send a gift???
That is really sweet of you! But I do not have a PO box for health reasons. I really do appreciate your support though, that means a lot!
Jacquie i am a fairly new subscriber.. watching your videos makes my day! I am encouraged to live life to my fullest and enjoy the good and the bad about life.. Thank you so much!
They make these amazing "jackets" that have you put in a freezer and keep in a cooler with u and when u need it u can put it on
I pass out from heat too. And it helps a lot!!
Is it an ice pack vest? I have one of those and it sadly does not work well for me. Is the jacket different?
Chronically Jaquie I've been looking into diff ones, This is one I'm thinking abt, not nesc this one but this type.
I really get sick w the heat and it makes all my illnesses so much worse. unfortunately right now I just use the cooling towels which do help some. I'm not looking forward to this week! I hope it stays cool enough by you n that you can find a vest to help you! ❤
Chronically Jaquie I've been looking into diff ones, This is one I'm thinking abt, not nesc this one but this type. my husband actually wants to build me one and even in the reviews someone did that. but this just gives you an idea of the type bc the freezer pack ones aren't the most helpful for me either.
www.amazon.com/gp/aw/d/B01DLSBIB2/ref=mp_s_a_1_30?ie=UTF8&qid=1501341652&sr=8-30-spons&pi=AC_SX236_SY340_QL65&keywords=cooling+vest&psc=1
I really get sick w the heat and it makes all my illnesses so much worse. unfortunately right now I just use the cooling towels which do help some. I'm not looking forward to this week! I hope it stays cool enough by you n that you can find a vest to help you! ❤
All the thumbs up for JUDD!👏 I know he'd pull the pickem up truck up to the house if he could (or your car). I think i look like Tommy from rugrats when i walk.😂 For your tube, can you maybe find a tape and tape it to your side?
I hate taping it lol, I am thinking that guards would be fine. Julian opted out of them but I would like them on my chair :)
I live in a hot area and also have POTS. What helps me is my cooling vest (which my POTS doctor got me for christmas; she's amazing) and basically its a vest with a ton of pockets that you put these ice packs it come with in. While it's not the best looking vest, it really helps because I don't have to hold ice pack all over me while the blood rushes down my hands. I just thought it would be good to mention what helps me in case that might help someone else with combating their illnesses :)
I understand how heat can get to you Since I live in a desert. If you are able to handle a cooling cloth or a bead cooling necklace it may be beneficial. They're so popular down here where I live but I know some areas they're more unfamiliar with them. If you check a sporting section in Walmart or other stores ask for cooling cloths. They stay wet for a while and are really nice when you're over heating because they are rather large so they can take up a lot of areas. If they aren't cool enough rubber bands for each end and ice you can make it into an ice cooling cloth, it's what I use to do at one of my old jobs because there was never any AC during 115-degree weather and the inside of the building was 120 at one time. If you want another method there are beads that absorb water that hold for HOURS at a cool temperature.
I have one but it does not work too well for me
I love watching your videos! They are so inspiring and uplifting. Oh, and Harlow just cracks me up! 😂❤️
I have CP and i can walk a little but i really appreciated this vlog because i'm looking into a chair i can push myself and like you said use it for those long outings where i want to be self sufficient and that isn't a transfer chair where you have to be pushed and this was really helpful. Then you could choose to teach harlow to Pull maybe if you wanted to my SD never finished learning it but i am trying to reteach him that :)
Thank you, I needed this reminder :) Ihave a complicated illness that effects my vision. I can't handle much light for long, and looking at details is hard, often painful, work. I use a white cane for walking long distances. It is safer and faster, even though I can navigate without it if I work hard at it, but I get dizziness and pain pretty quickly out in daylight looking at things. The white cane really helps because then I'm not straining my sight, I can wear darker sunglasses, and I am fresh and comfortable for looking at things when I really need to.
I just got my new chair this week. Its a more heavy o e than what you are going ti get and it has arm rests but its made my life so much Easier
Lmao I love your intro and outro idk what it is i just love it 😂
It was really nice hearing from Julian!
You and Judd are seriously relationship goals
I love how you take Jud's jokes so literally. "Yeah we have fans, in the guest room" it's so adorable and always puts a smile on my face 😂
CONGRATULATIONS ON 50K
i absolutely love jaquies eyebrows sooo much
I'm a new subscriber. How you are staying strong amazes me. I've been loving your vlogs. Keep up the great work and stay strong!!
I have POTS and use a rollator. If we were to go on a vacation that requires alot of walking - I would probably need a w/c. I am in PA.
Quick question: Does air blowing hand dryers ( like in public restrooms) bother you because of your sensory processing disorder? Just curious 😊
I do not like them but can tolerate them. That took a long time though!
Chronically Jaquie i always hated the blowdryers in the bathrooms!!
Blowdryers are a hub for bacteria, I don't recommend using them. They blow hot air and once your done, the higher than room-temp environment is a great catalyzer for bacterial growth, and once you activate the blowdryers, it shoots out a wave of hot air and bacteria!!!! Stick with paper towels, if not available just air dry, safer.
I cannot stand blow dries in bathrooms. I was diagnosed with a processing disorder when I was a kid. For some reason I can tolerate my hair dryer but can't stand any bathroom ones. I usually leave with my hands wet or use napkins that I store in my backpack.
Chronically Jaquie I don't like hand dryers either but I still won't use them when by myself 😂😂
Im waiting on pain management to get ahold of me so i can go in to get hopefully the fentnel pain patches
I have a TiLite Areo T, with a fold down seat back and removable seat pad. We looked at electric assist wheel, but I cannot lift them. Instead I have light weight wheels with Natural Fit rims and my service dog is training to help propel my 'chair. His harness helps with my balance also. The harness is made by Bold Lead Design, and is completely custom just like my 'chair. It is very expensive, but everyone I know who have one, will not go back to the other harnesses. Having a propulsion aid that gets into the car itself is handy. Due to repeated trauma my function is similar to a high functioning quadriplegic and this set up got me out of a full rehab electric.
You guys are literally goals ❤️😍✨😫
Never give up! ❤️ I love your channel thiiiiiiiiiiis muuuuuch and more!
I hope you felt good today Jaquie, I love you!! ☺️☺️☺️ PS I AM SO EXCITED YOU HIT 50K
I love you guys❤️ You're so awesome and inspiring! I hope the wheelchair is going to help you to get more independent and I don't think you gave up just because you're going to get one!!!
Keep moving forward❤️❤️❤️
"we have many fans" i loved this pun! You guys are adorable! Best of luck :)
I love his chair! I pray you get the best chair for you. You are absolutely right it's a tool for independence. Take care❤️
Oh hey Julian! We went to school together growing up. Crazy small world!
Yesterday was a bad day for me a transport service denied me to take my service dog with me while out in public withoutmy sd i had anxiety attack no dog to alert and it was awful but when I got home he came directly up to me started nudging me pawing at me and he calmed me down within seconds after I got home and I love your positivity on life and look forward to seeing your videos and you and Judd are so cute together perfect couple and Harlow makes your family complete and I use your just moving forward day by day thank you for being so great and sharing your life with us. And he's not just anxiety alert he's does other stuff too not going to get into that
Have you heard of or used frogg toggs? They're cooling towels that you submerge in water and when they evaporate it gets cold! I'm not totally sure the science behind it, but they really work and last about 4-5 hours. They're super useful!
I have one but it does not work too well for me
I love ur videos i stop talking to my cousins JUST to watch ur vids when they come out lol
I wish Julian could be my friend too, he is awesome. Go Julian!
Becky B Thank you Becky!
Look at smartdrive I use one it's amazing!!! It's a tap and go! Called smart drive mx2+ with pushtracker
Wheel chairs are a tool kids at school think it's for being lazy and some kids say" its not a tool it's a toy "
ROXY the proxy i remember kids coming in with crutches and people would litterally line up and go "can i use ur crutches?!!" There tools, not toys!!
Natalia yeah kids at my school do tHat and then get yelled at
Natalia I was riding my wheelchair and some one comes up and asks if they can ride it like seriously
Maybe look into the smart drive. I have heard that the wheels add more weight to the chair but a smart drive hooks on the camber tube and while it is 25lbs it is so much easier for me to load them separate. But everyone is different :) taking the wheels apart to load can be a pain if it rains or if I'm really tired so I really love the smart drive and I had arm and hand weakness as well as joint issues so I qualified under that condition. Sorry for the info rush, I had a very long and hard time getting my chair and learned a lot.
Have you ever thought about training two-four more service dogs and getting them to pull your chair like a sled? I've thought about it for mine when I end up there.
I have the Tilite Aero Z in hot pink!! I absolutely love it, and its amazing, my chair has a special back on it so it can support my sulfite more (my shoulders are horrible bc of eds) so it is around 20 pounds instead of 18, but
Just think! You might be able to go on grocery trips by yourself now if you discover that you need something or don't want to wait for someone to go with! Harlow and your wheelchair make it possible now because you don't have to worry about the standing and walking!!!!! I'M SO HAPPYYYYY
When I wake up I always. Watch you. I love you.
What are use frustrating that so many like most people seem to think that seems from in a wheelchair and they get the idea from a short conversation that I wasn’t as a child: that I was in a wheelchair accident and I have a spinal-cord injury. Not everybody in a wheelchair is a paraplegic! Especially if you can walk a little bit it is so hard to describe to other people (well it’s not hard to describe, but it can be hard for them to understand the whole situation)
your friend said he had a nero disorder too. I have MS is that what he has. I use a wheelchair to get around when that is going to be a lot of walking because my legs get very weak.
I get the same question about why I live in Israel, where it averages 95+ in the summer (which is around 6 months of the year). Same answers pretty much
I have a smart drive power assist for my wheelchair and it is purely AMAZING!!!!
I have a TiLite (I live in Germany) it was imported from the USA for me and I LOVE it. It's such a good, strong brand. I'm in a wheelchair for 9 years (I'm 27) and the opinion, that the wheelchair is the last resort is awful because having no wheelchair would tie me to the bed - "awesome" imagination (irony off).
I also have an g-tube button - if you need any photos just leave a comment. I have kind of a spoke guard (it's a typical wheelchair component here) and you can put on a velcro to secure your feeding tube.
Keeping my fingers crossed for a positive wheelchair examination!