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
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.
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 :)
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.
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
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!
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
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!
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
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!
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.
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!
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.
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!