I keep forgetting Jaquie lives in Florida. Because in the northern states there’s already snow! I keep wondering why aren’t they wearing coats?! xD glad the IVIG went well! Also great job Harlow! Whoo!
It's snowing in the Nederlands to. Yesterday first snow of this year. And last year and the year before that we only had 1 day snow and now already 2 and Tomorrow it's going to snow even more!!! I love it. Will it snow ever where Jaquie lives?
I've watched all your videos. I think you're such a huge inspiration to everyone who has chronic illnesses and even those like me who don't. Watching you makes me appreciate the simpler things in life. Thank you for everything you do. I love you Jaquie!
Hey Jaquie, have you ever thought of looking into rechargable batteries for your infusion or your feeding tube? I don't know what kind of batteries you need but I would suggest looking on Amazon
So glad your doing better with IVIG !! How's Judd's arm doing ?? I see its still wrapped :/ did his cultures come back yet ?? Hope you guys are doing well and enjoy the cold front :)
I was just gonna ask the same question!!! Especially with having to do more infusions before and after IVIG, I imagine that you would have to pee more often.
Hi guys, most people Intake 2-3 liters of fluids a day.. the only difference with intake is how.. iv or feeding tube can be cycled by the body much quicker so you may have to pee more, but since we often don’t Intake much by mouth, dehydration will make it so it’s about normal output as people who don’t do iv/feeds
Hi Jaquie, I suffer from sciatica which is chronic pain . I know how you must feel too. It's definitely tough day to day . Hello to Judd and Harlow and may you have a terrific Christmas
It's good to see you again. I've been wondering about people with your disorders a hundred years ago before the inventions of medical equipment and medications that are available now.The prognosis now must be light years ahead of a hundred years ago. Anyway, it's great to see the three of you again. I'm impressed with all three of you but today I realized how intuitive Judd is about knowing just how far to go in helping you without "babying" you as he put it in his comments on a video. Bravo Judd, Harlow, and Jaquie!
Caroline Honse not to sound grim, but people just died a hundred(s) years ago if they were sick. Also as we evolve and healthcare is better.. sick gene people are surviving and passing on the defective genes to the next generation and hence more illnesses but also more medical discoveries too. Just a general scenario not pin pointing any particular disease (condition) I am talking from a strict scientific point of view.
Sending you love and light. Thank you so much for sharing your life with us. You always help me with my anxiety for some reason. I was wondering do you recycle all those batteries and other medical supplies? If so where? Hope you feel the benefits of IVIG soon, keep on fighting!
Yay for handy husbands! Snowing in Ohio right now so it's it's time to see the idiots come out of the closet when they drive. Still praying that the symptoms were less this time. Have a wonderful day Jaq!
Hey jaquie I just wanted to say how amazing you are and that you really inspire me. Every day I wake up thinking I wonder what Jackie did today. I may not be battling the same illnesses as you but I do have some mental illnesses that are in my life. I don’t know what I would do if I couldn’t listen to your voice and watch your blogs everyday. You keep me going.
Off topic from the vlog, but I really hope your bracing appointment goes well. I’m looking into a brace for my right hip because it’s ALWAYS sliding out of place. Living that EDS life haha! :) I’m looking forward to seeing how that turns out for the both of us!
look online for a "hip belt"! i have one and while it's not a cure all because it's very small and only goes around the main part of your hip, not around your thighs and lower abdomen like a normal hip brace, it's really helpful! it's velcro and it velcros one strap across and two straps on either side, but they overlap one another so it looks like one straight line. but you can tighten it to your body and it's very helpful. bit pricy though, mine was about $50 on amazon. but if you look up "hip brace belt" on amazon, it's a dark-ish blue color. if you can't find it, let me know and i'll go look up the name for it. good luck!
both of my hips sublux EVERY SINGLE TIME i take a step😩😩 each side just goes click, click, click, click 24/7. the brace really helps to hold them in place
Judd is being a handy man just like Paul. What a nice hubby Judd!! How long does Judd need to have that bandage on his arm? I hope he's getting better.
That's a good point! I noticed the shortage of fluids when I was in my last clinical in the hospital for nursing school! The hospital that I have my clinicals at no longer runs meds with full bags of fluids, they just mix it with sterile water and do an IV push instead. Great question!
Does your mouth ever get dry from not drinking? I know you drink sometimes, I’m just curious. I didn’t know if the fluids also keep your mouth from getting dry.
You may of addressed this already, sorry if you have, my memory isn't great. How do you not get your hair caught in anything, as notice you always wear your hair down, I know you move it out the way when infusing, just wondered if you ever get ya hair caught in anything, and btw how do you always have flawless hair.. Thanks for taking us on your journey x
What about the smart drive? Does it still work with the shelf? Also, if you’re interested in other wheelchair gadgets you can check out prettysicksupply.com it is basically a compilation of different shops that sell stuff for chronic illness supplies
I have a lot of the same medical conditions you have but was wondering what the IVIGs helped with as I wasn’t sure if it would be something I may want to look into as well.. but not sure which specialist I’d even talk to about it. I’m assuming a mix of the cardiologist and gastro doctor? Sorry if this was in another video! I’d love to be more informed on it though! Hope your doing well!
I’m glad that you have a good support system!!! Do you know any good tips about muscle stiffness in dogs? My middle aged lab is getting stiff and im not sure how to help her she seems to be in a lot of pain!
Did the anodizing (purple bits) on your wheelchair cost you extra personally? I’m getting the exact same chair and I want matte black with sapphire anodizing but if we have to pay I can’t afford it so I’ll get navy blue instead
What brand facial mask are you wearing? Or what’s that kind called? I just got back from UAB’s Dysautonomia clinic and I noticed some people wearing them. I just forgot to ask them about it.
Hi i love your videos I have watched them all and I love your family I have a ? What do you do with your empty syringe I'm all about recycling I'm a crafter and I use the for crafting things if you can ship them I'll pay the fee thank you for sharing you story
its nice to see judd again. your wheelchair is awesome. If you think something would improve your life. I wouldn't feel bad about it or apologize for it. Bible says take care of your self first.
Hey I love your videos. I have golden har syndrome and I used to have scoliosis but it got treated when i was 2 so I only have to deal with bad back pain now which I guess is better than what you have to deal with xx
girl, you made me really nervous when you were out at night by yourself, even though you were only in the parking lot, it's still too dangerous so get a small LED flashlight and have Judd the wonder man, figure a way to clamp it onto the underside of the armrest so it points the way ahead. Please?
Does jud ever feel like his youth is taken from him because he is held back from doing as much ?I bet he just gets frustrated and exhausted somtimes. Can you talk about some of those things that might go along with families with chronic illness? Were you this sick when you gpt married etc...etc..
xoxo lover her symptoms started to go crazy about half a uear into their relationship while they were in highschool. She gave him a chance to leave her because of it. When you love someone, it doesnt matter what they are struggling with and how it affects your life. You just want to be with them and care for them.
They have covered this in a bunch of their videos. I don't really see what he could be missing?? It appears their home is spotless, the laundry gets done, she cooks for him, they go on adventures, and they spend time binge watching tv together. I have been married 15 years, seems like they have everything covered!
I keep forgetting Jaquie lives in Florida. Because in the northern states there’s already snow! I keep wondering why aren’t they wearing coats?! xD glad the IVIG went well! Also great job Harlow! Whoo!
it's snowing in the mid Atlantic now! 👍
It's snowing in the Nederlands to. Yesterday first snow of this year. And last year and the year before that we only had 1 day snow and now already 2 and Tomorrow it's going to snow even more!!! I love it. Will it snow ever where Jaquie lives?
Haddock And Bentley It probably will unfortunately. I say unfortunately because of global warming. It has snowed in Atlanta and Texas.
I've watched all your videos. I think you're such a huge inspiration to everyone who has chronic illnesses and even those like me who don't. Watching you makes me appreciate the simpler things in life. Thank you for everything you do. I love you Jaquie!
Your positivity is infectious 💞thank you
I still watch these videos. I miss Jacquie so much. I now have a diagnosis of hEDS and am so grateful for all she did. Xxx
There are MANY reasons Judd is amazing.
Eric Taylor
Judd is a police man
Hey Jaquie, have you ever thought of looking into rechargable batteries for your infusion or your feeding tube? I don't know what kind of batteries you need but I would suggest looking on Amazon
So glad your doing better with IVIG !! How's Judd's arm doing ?? I see its still wrapped :/ did his cultures come back yet ?? Hope you guys are doing well and enjoy the cold front :)
Weird Question: Do you need to pee more during/after your infusions? Also, whenever you call Judd a trooper I imagine him as a stormtrooper!
I was just gonna ask the same question!!! Especially with having to do more infusions before and after IVIG, I imagine that you would have to pee more often.
I was thinking this also- I can only imagine with that much saline/fluids, it would run straight through me!!
Me, too! Every time I have iv's the second bag makes to start to pee. Like every 20 minutes!
I’m wondering the same. She’s not ingesting it so you wouldn’t think it’ll go to her bladder ?
Hi guys, most people Intake 2-3 liters of fluids a day.. the only difference with intake is how.. iv or feeding tube can be cycled by the body much quicker so you may have to pee more, but since we often don’t Intake much by mouth, dehydration will make it so it’s about normal output as people who don’t do iv/feeds
Hi Jaquie, I suffer from sciatica which is chronic pain . I know how you must feel too. It's definitely tough day to day . Hello to Judd and Harlow and may you have a terrific Christmas
It's good to see you again. I've been wondering about people with your disorders a hundred years ago before the inventions of medical equipment and medications that are available now.The prognosis now must be light years ahead of a hundred years ago. Anyway, it's great to see the three of you again. I'm impressed with all three of you but today I realized how intuitive Judd is about knowing just how far to go in helping you without "babying" you as he put it in his comments on a video. Bravo Judd, Harlow, and Jaquie!
Caroline Honse
not to sound grim, but people just died a hundred(s) years ago if they were sick. Also as we evolve and healthcare is better.. sick gene people are surviving and passing on the defective genes to the next generation and hence more illnesses but also more medical discoveries too. Just a general scenario not pin pointing any particular disease (condition)
I am talking from a strict scientific point of view.
Sending you love and light. Thank you so much for sharing your life with us. You always help me with my anxiety for some reason. I was wondering do you recycle all those batteries and other medical supplies? If so where? Hope you feel the benefits of IVIG soon, keep on fighting!
Yay for handy husbands! Snowing in Ohio right now so it's it's time to see the idiots come out of the closet when they drive. Still praying that the symptoms were less this time. Have a wonderful day Jaq!
Hey jaquie I just wanted to say how amazing you are and that you really inspire me. Every day I wake up thinking I wonder what Jackie did today. I may not be battling the same illnesses as you but I do have some mental illnesses that are in my life. I don’t know what I would do if I couldn’t listen to your voice and watch your blogs everyday. You keep me going.
Sorry watch your vlogs
I hope your bracing goes well I have special braces for my knee and ankle that I wear
My brother walked in and said you’re watching chronically jac-k-wee again and I felt the pain when people get your name so wrong 😂
Off topic from the vlog, but I really hope your bracing appointment goes well. I’m looking into a brace for my right hip because it’s ALWAYS sliding out of place. Living that EDS life haha! :) I’m looking forward to seeing how that turns out for the both of us!
look online for a "hip belt"! i have one and while it's not a cure all because it's very small and only goes around the main part of your hip, not around your thighs and lower abdomen like a normal hip brace, it's really helpful! it's velcro and it velcros one strap across and two straps on either side, but they overlap one another so it looks like one straight line. but you can tighten it to your body and it's very helpful. bit pricy though, mine was about $50 on amazon. but if you look up "hip brace belt" on amazon, it's a dark-ish blue color. if you can't find it, let me know and i'll go look up the name for it. good luck!
both of my hips sublux EVERY SINGLE TIME i take a step😩😩 each side just goes click, click, click, click 24/7. the brace really helps to hold them in place
Can Harlow get any cuter!?
Glad IVIG went well ❤️
"Hippo.. sandwich." Sorry, Judd. It doesn't work that way. 😂😂
Judd-how is your arm?
Awesome wheelchair gadget!
Harlow-adorable as always!
Jaquie-always an awesome inspiration!!
Hope you are feeling better today and didn’t have too bad of a night.
So glad IVIG went well for you. Exciting news! London has been threatened with snow tomorrow!! ⛄️ ❄️⛄️❄️⛄️❄️⛄️
Wally is one my husbands favorite Walt Disney movies
'Hippo.. sandwich' hahaha best part 😂
IVIG was the worst experience of my life. Watching how well you handle it really humbled that feeling.
I've always said that, too. I have book smarts, but no common sense.😂
Cool shelf. We have a little black bag that fits over the handles of a transport chair but that is neat!
Judd is being a handy man just like Paul. What a nice hubby Judd!! How long does Judd need to have that bandage on his arm? I hope he's getting better.
Happy holidays sweet Jaquie
You’re almost at 100,000 subscribers! You are such an amazing and strong woman! ❤️
I had infusions yesterday too (for a relentless migraine) and on my birthday no less.
how is judds arm doing? i see he still has the wrap on it. i hope yall are having a good day!
6:57 I have something like that, only with 2 compartments. 1 with a zipper, and 1 with velcro.
You’ve got such clear skin!
Jaquie, have you heard about the IV fluid shortage? Does that worry you being that you rely on IV fluids?
That's a good point! I noticed the shortage of fluids when I was in my last clinical in the hospital for nursing school! The hospital that I have my clinicals at no longer runs meds with full bags of fluids, they just mix it with sterile water and do an IV push instead. Great question!
I wish you and Harlow were in youtube rewind that would've been so cool
Now, if you just avoid meningitis and the other ivig side effect crap, this time it seemed to go really well!!!
JP JP Last time she pretty much nailed it at home!
I get what you mean when you say that you don’t want to take up allot of room. It’s just easier to deal with when you are in small spaces and crowds.
I love you and Judd. Harlow is so cute and funny. Praying for you family.🙏❤👃
Iv toradol is a wonder drug! I have had it for migraines before..... but just be careful with it because it is rough on your kidneys....
Does your mouth ever get dry from not drinking? I know you drink sometimes, I’m just curious. I didn’t know if the fluids also keep your mouth from getting dry.
Lizzie Hill I was wondering the same :)
A dry mouth is how your body says you're dehydrated. She stays well hydrated so I'd assume not.
Clicked so I can hopefully make it easier to shop in a wheelchair. I'm a child and my arms are weak so my mom pushes me and it's hard.
Maybe get a wheelchair like hers? So you can get around easier? Idk, just a thought
+Jules’ Pets it's not having enough room. The wheelchair is rented because pots can go away not likely but can. (20-25)
Is so different how you seem this time after IVIG, do you think ketamine helped with pain?
Wow, what a huge day. I wonder if having the Ketamine so close to IVIG helps any with the body pains? Hope your day of recovery is going well.
Love you Jaq. Hope after effects aren’t too bad. How tall are you, Judd, and Harlow?
Good luck, it’s starting to get cold in Florida.
I LOVE the bit of purple you have on your wheelchair😍💜💜
You may of addressed this already, sorry if you have, my memory isn't great. How do you not get your hair caught in anything, as notice you always wear your hair down, I know you move it out the way when infusing, just wondered if you ever get ya hair caught in anything, and btw how do you always have flawless hair.. Thanks for taking us on your journey x
What about the smart drive? Does it still work with the shelf?
Also, if you’re interested in other wheelchair gadgets you can check out prettysicksupply.com it is basically a compilation of different shops that sell stuff for chronic illness supplies
Emma Lis the smart drive hooks on the back, the basket isnt hard its squishy.
How is Judds bobo? Great video as always. Love you guys :-)
I have a lot of the same medical conditions you have but was wondering what the IVIGs helped with as I wasn’t sure if it would be something I may want to look into as well.. but not sure which specialist I’d even talk to about it. I’m assuming a mix of the cardiologist and gastro doctor? Sorry if this was in another video! I’d love to be more informed on it though! Hope your doing well!
Desiree Schwartz she has a playist for ivig!I believe she's using it mainly to hell with her mast cell activation disorder
I’m glad that you have a good support system!!! Do you know any good tips about muscle stiffness in dogs? My middle aged lab is getting stiff and im not sure how to help her she seems to be in a lot of pain!
I love your videos! Thank you so much for posting!
Amazing couple with such a lovely dog..god bless u
I love how you have such an amazing support system
"the sound of our people" lol
Did the anodizing (purple bits) on your wheelchair cost you extra personally? I’m getting the exact same chair and I want matte black with sapphire anodizing but if we have to pay I can’t afford it so I’ll get navy blue instead
Love you Jaquie! and Harlow is such a cutie!
I have mine in the morning. Hope your feeling well tonight.
Hope the rest of your day is lovely!
i live in Florida and its been pretty cold! hope you have a merry Christmas!! :D
Since you get so many fluids do you still need to drink water?
Can you eat baked sweet potato mashed up with butter and a little cinnamon? One of my most favorite side dishes.
Never thought of it yet but how old are jaq and Judd? Thanks!
What brand facial mask are you wearing? Or what’s that kind called? I just got back from UAB’s Dysautonomia clinic and I noticed some people wearing them. I just forgot to ask them about it.
😆 the video thumbnail kinda looks like you’re flying first class!
Glad everything went well! Does the ketamine not work for pain after IVIG? I like that shelf!
Hi i love your videos I have watched them all and I love your family I have a ? What do you do with your empty syringe I'm all about recycling I'm a crafter and I use the for crafting things if you can ship them I'll pay the fee thank you for sharing you story
its nice to see judd again. your wheelchair is awesome. If you think something would improve your life. I wouldn't feel bad about it or apologize for it. Bible says take care of your self first.
Yall are so cute Harlow and all lol :)
I don't understand why you bring Harlow to the Hospital?
Judd
How do you defrost Harlow's raw food every day?
Hey I love your videos. I have golden har syndrome and I used to have scoliosis but it got treated when i was 2 so I only have to deal with bad back pain now which I guess is better than what you have to deal with xx
Ow Judds now got moustache😛😛
Where do you get your masks?
Why is gastrectomy not an option?
The sound of our people! If that ain't the truth haha
Yay for handy man husband's!
Hey Jaquie I love yall and your videos
You always get so pale after IVIG... I love the shelf thing!
I like your video!! Have a nice day!👍
I’m going crazy I’m in class rn and right when you said “oh we are watching Wallie” my teacher played wallie.
i hope that the next few days arent too hard on you Jacquie
I'm 130 pounds and 20 grams is it.
Good 😀
girl, you made me really nervous when you were out at night by yourself, even though you were only in the parking lot, it's still too dangerous so get a small LED flashlight and have Judd the wonder man, figure a way to clamp it onto the underside of the armrest so it points the way ahead. Please?
Does jud ever feel like his youth is taken from him because he is held back from doing as much ?I bet he just gets frustrated and exhausted somtimes. Can you talk about some of those things that might go along with families with chronic illness? Were you this sick when you gpt married etc...etc..
xoxo lover her symptoms started to go crazy about half a uear into their relationship while they were in highschool. She gave him a chance to leave her because of it. When you love someone, it doesnt matter what they are struggling with and how it affects your life. You just want to be with them and care for them.
They have covered this in a bunch of their videos. I don't really see what he could be missing?? It appears their home is spotless, the laundry gets done, she cooks for him, they go on adventures, and they spend time binge watching tv together. I have been married 15 years, seems like they have everything covered!
Harlow wonders you you are so bald. If you had fur like her you wouldn't need a blanket.