I have been a wheelchair user my entire life. That is the quickest approval I have ever heard of! Congrats! That's truly amazing to get approval that fast!!
Jaime Hooker-Alexander. Yeah and for an ultralight with power assisno less. I hope she's getting a TiLite as everyone I know thinks theirs is exceedingly better than their Quickies and such. Its true in my case. As a high functional partial quad, the TiLite got me out of my rehab electric. I went without the power assists since I wanted to be able to put it in a vehicle myself. So now I have a SD who aids me on my weakest side.
Hi Jaquie! Love your channel. I too have chronic illness but manage to drive a bit. I had a chance to educate my dentist about his granddaughters feeding tube. She is 2yrs old and since he is a doctor they ask for help and he doesn't know crap in this area. I showed him one of your videos and gave him the link. He was very moved and now knows where to start. Thank you so much for dedication and love! Also thank Judd for his service! He is American Strong!!
Yea! So happy your wheelchair has been approved! I also wanted to thank you for posting everyday. My hubby has several chronic illnesses and I know how very difficult every moment of every day can be. But you keep moving forward and we try to do that as well...even if it's only half a step! 😘💙💛💚😘
Good morning to you, Judd and Harlow 🐶 I used to use my wheelchair before my Hemi-Laminectomy lumbar spine surgery done 6 weeks ago........ And now only use my walker just like yours, only it's blue😀 because my feet are still numb from my hammock accident August 1, 2014.😢 I have parasthesia--temporary paralysis.🌷 I also have Bailey 🐶 my service dog in training. Hugs to you, Judd and Harlow 🐶🌼❤
I have a bright pink walker that I use quite a bit. I use mine for my POTS and EDS but it feels like my pots is worsening (even with now being on meds). But my POTS Doctor said my walker is a great idea. It's fantastic when your doctors are so informed and helpful. Congrats on the wheelchair being approved! Every tool helps :)
I'm so happy things are falling in place for you!!! It can be so difficult for people like us to not only get everything right but do everything we want to and fit in so many Dr appointments.
The gangster music with the feeds-prep is always my favorite part. It makes me laugh because it is cool/tough music during medical prep. But hey, you've made it seem cool, so very nice! 🎶
Just sounds like music you'd put on in the background when you're playing sped up clips or things you've cut the sound out of. Interlude music, if you will. Doesn't sound gangster. I liked it.
I started physical therapy yesterday, gave me some pointers, found out that I can only stand for two minutes with support. Today my mother forced me to wash my dishes while standing up, I had almost no support holding me up and almost fell back multiple times, and when she decided to support my back, it was already time for me to sit back. If she wants me to eat again, she has to promise me to not push me pat my limits. I'm in a wheelchair, and just recovered from a hip fracture, standing up is hard and I just started therapy for me to stand again. I mean, it feels great to do things by my self seeing as I'm an independent and all, but I have limits. If she keeps putting stress on my I might have a heart attack.
Tear Drops I also have medical challenges and have finally learned (I hope) that pushing my body to hard does more harm than good. Stand up only when and for how long you can, and follow your PT direction and you will get better!
That's so wonderful that your wheelchair has been approved It's going to be such a helpful tool Hopefully you'll get your formula around this week or next week
Thank you for being so open and explaining everything so well! You have really inspired me to stop putting off getting help for increasingly inconvenient autonomic and digestive issues. They've often been sidelined by my mental health, but as you've said being healthy is about treating all issues to have a better life. So glad Judd is back, looking forward to seeing your adventurer tomorrow! :)
I haven't commented before on your videos, but I really wanted to after watching this one. The holistic approach you and your medical team take to your health care is really inspirational! It seems like you've got your doctors on board with addressing root causes rather than treating symptoms and you seem really on top of keeping all of them in the loop and working together. I have chronic illnesses and I am managing my mom's health care as well, and it gets really tiring and disheartening to struggle constantly to get appointments, testing, answers, treatments, keeping things managed properly, etc. So watching you describe your health care and your team gives me hope that I can achieve that for my mom and maybe even for myself. Thank you!
Hey Girl! Just wanted to tell you that you inspire me so much, as I’m going through a hard time with getting the treatment and diagnosis I need, so I have to go on home study, which is super disappointing but watching your videos and how optimistic you are, plus what you’re doing with doctors for self advocation is so cool and informational to see! Love you! Keep doing what you’re doing!
I love watching these videos and seeing your resilience constantly through whatever you get thrown at you! I have tn and chronic migraines which is not fun but particuarly insignificant compared to other people but its nice to see the light shown on chronic pain and illnesses and how you personally deal with it all :)
So happy for you! On Friday I have an appointment to try and start getting diagnosed and getting help. So glad you might be starting the new formula soon!
I'm glad your wheelchair got approved by insurance. I love it when you say 'I played Tetris' I guess that what it must be like. You always smile when you are with Harlow. Hi Judd.
This made my day Jaquine. I had a few fainting spells the night prior and this morning with severe stomach cramps. I love coming to your channel and watching your videos. Stay strong as always fam.
Jaquie taking a break from her feeds made her glow so much more in this video. I know it's not a good thing to be happening but I'm glad she got a break and felt better for a little while
Woo hoo on getting your wheelchair approved. I am so sorry the formula is not working and causing you so many issues. Hopefully the new natural formula will work better. And I am happy you have Amber to take you places. That Harlow is so sweet. Kisses for her!
I have recently started watching your channel. In 2005 I started fainting. My bp would shoot up extremely high when I stood up, causing me to have multiple syncope episodes. Took years but finally found an amazing dr in Ohio who treats patients from all over the world with similar issues. I was diagnosed with POTS/ehlers-danlos syndrome vascular. I also have a sister who has been diagnosed with gastroparesis which drs believe is related to my autoimmune disease. She has had a feeding tube but now has a gastric stimulator. Just want you to know you are not alone! Keep going! I realize this video was made awhile ago but was watching your others and decided to comment! Don’t have Instagram but I do have Facebook and will try looking you up. Take care and God bless!! ❤️❤️❤️
Congratulations Jaquie!! I am also waiting for my customize wheelchairs, you are right it will give us more independent to enjoy life. Can't wait for my, i have to wait around 3 to 6 months 😔 but it worth the wait. Hope you enjoy your too!!! My wife and i are fans of your videos!!! We love Harlow, can't get enough of watching her. We wish you all the best health. Peace and joy to you and Judd.
Getting down on Harlow's level means playtime! She is adorable. I'm so glad you can get your exercise done when you feel up to it. It's a struggle for sure with Chronic Illness.
Hey Jaquie! I just wanted to say hi and thank you for the videos you make!! For the past two years I've been struggling with my own chronic battles and your videos are some of the only things that helps me stay positive through the rough patches 😁
Oh poor Judd he's been working so hard he looks exhausted bless him! I'm sorry you are struggling right now too, but it looks like you have lots of things coming soon that will help you xx
I'm looking into a custom wheelchair for my postural orthostatic tachycardia syndrome but none of my doctors believe me when it comes to me being so fatigued. They think that I won't walk ever again when I have a wheelchair. I'm trying to figure out which doctors to ask
So very happy for you. Congrats on getting your wheelchair approval but I am a bit ticked off because the insurance won't approve a necessary medication. I don't understand their position. Who the heck works there and what can they be thinking. I hope it all works out for you. Harlow is so funny. She must think you are playing with her when exercising lol. She brightens your day I'm sure. Take care luv.
I have a new Euro style walker and I love it. I have MS and although I can walk with a cane I can't walk very far. Maintaining balance takes a lot of energy. My walker is the next best thing to a supermarket buggy. The only problem is the condescending way well-meaning people treat you. I would like a t-shirt that says "Weak legs don't come with a weak mind." I took it on vacation and did really well but several people told me how 'brave' I was. I smiled but cringed inside. I've decided to be nice and appreciate the good intention, but I wish people would see the 'ability' before the disability. You have such a good relationship with your hubby. I see help and encouragement when you need it and respect and space when you don't.
Jaquie do you watch the Frey life? Mary was just talking about an enzyme cartridge that goes at the end of her feeding tube to help with malabsorption. Is this an option for you?
carissameer I could always ask my doctor but I'm almost certain our malabsorption is caused by different things. If it was an option for me I think I would already be on it, but it never hurts to inquire (though I doubt it is meant for my issues). However with a more broken down formula we are expecting to see improvements (:
Chronically Jaquie sorry for that, I had problems with cramps/diarrhoea/sickness before I discovered my lactose intolerance, I'm sure you've been checked for nutritional intolerances like lactose or fructose, gluten, what about artificial sweeteners - they're not good for the bowel either, and what about the old formula, was it not compatible with the new tube? or wasn't it good either? because I thought you had to switch it for other reasons (tube/insurance?) maybe I mixed it up
Jacquie I'm in so much pain😭 my legs hurt so bad and I bashed my elbow really bad when I was getting off a bus and tripped😬 and I'm in so much pain.... My legs are too bad... your videos take my mind off the pain... It so bad... it's too bad... I want it to stop.... I ache so much...
I don't mind all the medical talk AT ALL! We're currently on our own #bfam #edsadventure. Neurology today. I totally get it. ;-) you just keep doing you and keep being #chronicallyfabulous ;-P as always 💞
So glad your wheelchair got approved! It's going to help you so much! I have the TiLite Aero Z and it's helped me so much! Also, I just got my travel pump for my infusions! I'm pretty sure it's the same as yours and I'm excited to be able to infuse on the go!
Hey Jaquie, I also wasnt able to tolerate my first feed formula at all and experienced a lot of pain from it (bloating, diarrhoea, cramping), and it was a bit struggle to change feeds. Although my new feed (which is semi-digested and thus easier on me) is better tolerated I still have diarrhoea and bloating, just less of it. I think it's just something we have to accept because feeding in this way will take a long time to adjust to, which makes sense because it isn't the natural way of feeding. Just wanted to tell you this to forewarn you that whatever new feed you might try might not be perfect because most feeds share similar ingredients. It's likely you'll still experience the bad side effects for a while, but I hope whatever one you get isn't as bad. Good luck!
With your new 'chair, paratransit (Hartflex and Hartplus) may be an option for solo treks. I didn't understand how much of an effect returning to independent transport would have. Your system is better than mine with your Hartflex. Everything here requires a previous day reservation but our general transit system is one of the best in the US and profoundly accessible. Just an idea regarding a mobility option that you haven't mentioned (yet).
I'm SOOOO HAPPY your wheelchair got approved! :D And that it won't cost too much! I'm really curious to see how it's going to work for you and change your life. I'm also curious how you'll like the power assist wheels.
Haha I bet when you were on the floor doing exercises, Harlow thought that you were going to play with her like Judd does while on the floor, especially because you were moving a lot
Chronically Jaquie good for you 😊 acupuncture was helpful too but couldn't afford to go as often as I should have. You are such an amazing person and such the inspiration to so many, including me. Keep up the fabulous work.
Even if insurance approves your medication after appeal, you should check out the PAP anyway. They often have financial assistance and might help with your out of pocket maximums for that drug next year.
I love your spirit. I watched today's blog and as I also watch the Frey life too,Mary has a feeding tube similar to yours. I thought I might mention that she adds "relizorb.com" which is a digestive enzyme cartridge to her feeding tube. I hope it might be a new tool that would help,please have a look.
my dog used to do the same thing when i first started at home pt but now after 3 years he just lays there like “.....are you done yet weird human??” 😂 YAY for insurance approval, it’s such a rare relief!! 💕🥄
Harlow, reminds me of my cousin's late Golden Retriever, who wanted attention, when she didn't get any. Must be a Golden Retriever trait, because her Golden Retriever mix she has now does the same thing and she has a new Golden Retriever puppy.
My mobility is getting worse. My legs dont work as well as they used to. And since i have severe RA the weather is also a factor, so the changes we have had in the weather has been killing me lately.
I hope your bowel movements improve soon, I couldn't think of much worse, fingers crossed your pain lessens soon. Loved harlows cuteness during your exercise lol
Are you on daily infusions again? I feel like we see infusions daily but maybe not and my daily episodes run together. Hope you are doing better every day! Love seeing you smiling and not in pain from the feeds (hoping the new formula works well)
No, not daily. My typical is 3x a week. :) Doc wants me to start daily again due to dehydration from the runs, but hoping I do not have to with the new formula coming in.
Chronically Jaquie good luck with the injections too! I am looking for a way to get some sort of systemic relief of inflammation and was thinking about ketamine. Can't wait to hear how it goes and I may bring it up to my doc because I heard about them here :)
Skyzze FinCham Oh that's horrible! I hope that the doctors have given you good advice and pain relief that helps. I'm not sure what caused you to fall? Is that why you need a wheelchair because you fall?
No I don't need a wheelchair thank god because i can still canl walk. but at frist is was bad could not bent down just hurting and i was in a lot of pain but am get better thanks
Jaquie could you possibly explain/make a video on how you came about getting your diagnoses. Like what steps you took, specialists you saw and how long it took. I suffer from chronic pain and am currently on my diagnoses journey and it's really hard, drawn out process made all the harder by specialists trying to encourage me to give up my search and just take pain meds ( which im already doing anyway). Im pretty sure I have EDS and fibromyalgia but the dr told me there's no point going to a specialist or genetic testing to diagnose it as there's no cure and the only treatment would be pain meds and physical therapy anyway. Just feeling a little disheartened by it all and you always are so positive and give me strength to continue my fight.
I am having the hardest time getting my insurance to cover a wheelchair!! My cardiologist is working hard to get it approved and he is disgusted by insurance mess!!!
Love the pair of leggings you have on. I've started wearing leggings again after years of not wearing them. I feel more comfortable wearing them again now that I found a few brands that fit me right. I have issues due to my weight in the past year due to gastritis changing my waist size. I also wanted to mention Dollar General has some really nice and soft feeling legging.
Oh hun, I am so sorry the feeds have caused all these problems!!!! MEGA blergh!!! I am happy you have such a fantastic medical team on your side, and today's appt went as well as it did! I'm super excited for you!! You deserve some relief and stability! Btw, I have done 10, 5, and 3 day (at different times) outpatient high dose ketamine infusions (in Clearwater actually!) for my CRPS/RSD. I benefited from them immensely, and had the bonus perk of experiencing improvement to varying degrees with many of my other conditions . If you have any questions feel free to ask away! Also congratulations on the wheelchair approval!!! ps- can I have your POTS doc? Not only do I not have one here (OU has a great dysautonomia dept, but, that's halfway across the state) he also sounds AMAZING!! 😅
Do you take a betablocker for pots? Or ivabradine? I'm trying to decide which to take. Weighing the positives and negatives of each... I've tried them both so I know what I'm in for.
I hate when insurance won’t pay for things we need . I’m on Medicare and Medicaid and neither wants to help pay for me to get massages which drastically helps my neck pain (I have 2 herniated discs in my neck and 2 in my lower back) even my chiropractor knows it helps and he can’t do anything. :/ For your care plans , how did you go about figuring that out ? the er doc from last night suggested I get a care plan in place because of my gastroparisis and my million other issues
If you live in a large city that has a School of Massage as I do, massages are $25.00. The only other alternative is try to save up for a few and have someone who is willing to learn it go with you and observe the technique. Many years ago living in another state I was in a couple of car accidents and had tons of massage. I could not have recovered without. I had about 100 in my lifetime so I am very good at it but wouldn't want to do it for a job. It takes a lot of strengthI have sold MAPD's and Medicare Supplements for many years and it is not covered by any of them. I do not expect to ever be covered because of Medicare regulations which are getting more stringent every year.
Have you ever inquired about Relizorb by Alcresta Therapeutics? It is an enzyme that connects to the end of your feeding tube before entering your body. Maybe, having this, will calm things down a bit. ☺ Just a suggestion.
Insurance can be very frustrating. I'm at an impasse with mine about my TMD. They won't approve a dental splint but said if I try a dental splint and it doesn't work they will approve surgery. Well I can't afford the dental splint out of pocket. :/ so I just deal with popping and stuff from my jaw.
What are those copper things hooked to your bed? Even tho your body isn't liking the formula, your skin looks great. Plus that elephant pillow is cute!
Ps you won't be waiting 3 months. It only takes Ti Lite like 10 days to build typically the clinic tells you 3 months for the insurance process not the building/ ordering process
iamwhoiam absolutely ridiculous that US doesn't have public health care!!! Jackie shouldnt be waitibg for her meds to be aproved by a private company. Here its the government that pays 80% or more from of the cost, and of course you can buy them right away!
White Dove I totally agree. Supposedly we are the greatest and wealthiest country, yet health wise people are treated like crap by health coverage, maternity leave, etc. Maybe people whose job it is to approve things should personally go live with people for a few days. Maybe they will grow a heart and see a person who has needs and not a virtual patient on the computer. Our pharmaceutical industry and health care systems are crooks. It is so political really and all about money. Jaquie has soooo much patience.
Hopefully you reply to comments 🙏. Ok so I just thought of this. If you're shopping or something with a service dog that alerts things, and a random person has the same thing as your service dog is trained for, will the dog help the other person or just stand there because those are not their orders?
Hi! Firstly, I'd like to say that this is a wonderful thing you're doing. I've been watching your videos for some time, and I'm always struck by how actively you advocate for chronic illnesses and invisible disabilities et cetera! Just wondering, but are there any sites or shops we can visit to support these causes? I've watched your blanket vlog, so I know about that, but is there anything else we can contribute to? Thanks!
Do you know which version of the Kate Farms formula you're getting? I bought some to try to get some nutrition in orally because solid food has been giving me extreme stomach pain over the past few months, as well as some other symptoms, and I was upset to notice that the formula that I bought has carrageenan in it which is a really bad stomach irritant that can cause some pretty intense symptoms. The unflavored peptide plus 1.5 is the only formula that doesn't have it.
You could always try underwater therapy or whatever it's called- I've heard it helps with weaker joints because water density makes you feel lighter, but it's good exercise. The bills you get are probably so high even with insurance it's insane. America has super overpriced medicine and stuff like that.
Hi Jaquie, Does your POTS Dr specialize in that field? My POTS is overseen by a Electrophysiology Cardiologist, since he diagnosed me with Neurocardiogenic Syncope via Tilt Table Test 20 years ago (I also have separate EP cardiac issues, plus other chronic illnesses). I just wonder if there are doctors more specific to POTS that I'm not aware of, that could find better working treatments for me. Thanks!
Patreon question! Did any of you guys "pay" in €? Reading stuff from vat and so on, does anyone know how much they cost? And did any of you supported only once (and maybe a higher sum) how did that happen? Are there any costs for jaq?
Forgive me if you've answered this before. Why do some people choose a transport chair over a regular wheelchair? Is it purely cost-related or are there functional reasons?
I have been a wheelchair user my entire life. That is the quickest approval I have ever heard of! Congrats! That's truly amazing to get approval that fast!!
Jaime Hooker-Alexander. Yeah and for an ultralight with power assisno less. I hope she's getting a TiLite as everyone I know thinks theirs is exceedingly better than their Quickies and such. Its true in my case. As a high functional partial quad, the TiLite got me out of my rehab electric. I went without the power assists since I wanted to be able to put it in a vehicle myself. So now I have a SD who aids me on my weakest side.
Hi Jaquie! Love your channel. I too have chronic illness but manage to drive a bit. I had a chance to educate my dentist about his granddaughters feeding tube. She is 2yrs old and since he is a doctor they ask for help and he doesn't know crap in this area. I showed him one of your videos and gave him the link. He was very moved and now knows where to start. Thank you so much for dedication and love! Also thank Judd for his service! He is American Strong!!
Yea! So happy your wheelchair has been approved! I also wanted to thank you for posting everyday. My hubby has several chronic illnesses and I know how very difficult every moment of every day can be. But you keep moving forward and we try to do that as well...even if it's only half a step! 😘💙💛💚😘
Good morning to you, Judd and Harlow 🐶
I used to use my wheelchair before my Hemi-Laminectomy lumbar spine surgery done 6 weeks ago........ And now only use my walker just like yours, only it's blue😀 because my feet are still numb from my hammock accident August 1, 2014.😢 I have parasthesia--temporary paralysis.🌷 I also have Bailey 🐶 my service dog in training.
Hugs to you, Judd and Harlow 🐶🌼❤
I have a bright pink walker that I use quite a bit. I use mine for my POTS and EDS but it feels like my pots is worsening (even with now being on meds). But my POTS Doctor said my walker is a great idea. It's fantastic when your doctors are so informed and helpful. Congrats on the wheelchair being approved! Every tool helps :)
I agree, every tool helps! And I love when we can get them in our favorite colors!
💖
Chronically Jaquie exactly! If we have to have these tools, it's great they can be customised to patterns and colours we love!
I'm so happy things are falling in place for you!!! It can be so difficult for people like us to not only get everything right but do everything we want to and fit in so many Dr appointments.
The gangster music with the feeds-prep is always my favorite part. It makes me laugh because it is cool/tough music during medical prep. But hey, you've made it seem cool, so very nice! 🎶
Charlene B I
Just sounds like music you'd put on in the background when you're playing sped up clips or things you've cut the sound out of. Interlude music, if you will. Doesn't sound gangster. I liked it.
I started physical therapy yesterday, gave me some pointers, found out that I can only stand for two minutes with support. Today my mother forced me to wash my dishes while standing up, I had almost no support holding me up and almost fell back multiple times, and when she decided to support my back, it was already time for me to sit back. If she wants me to eat again, she has to promise me to not push me pat my limits. I'm in a wheelchair, and just recovered from a hip fracture, standing up is hard and I just started therapy for me to stand again. I mean, it feels great to do things by my self seeing as I'm an independent and all, but I have limits. If she keeps putting stress on my I might have a heart attack.
Tear Drops I also have medical challenges and have finally learned (I hope) that pushing my body to hard does more harm than good. Stand up only when and for how long you can, and follow your PT direction and you will get better!
Karen Bonham, Thanks! I can walk again but I need a cane. Though recently I h acct been getting chest pains.
That's so wonderful that your wheelchair has been approved
It's going to be such a helpful tool
Hopefully you'll get your formula around this week or next week
Thank you for being so open and explaining everything so well! You have really inspired me to stop putting off getting help for increasingly inconvenient autonomic and digestive issues. They've often been sidelined by my mental health, but as you've said being healthy is about treating all issues to have a better life. So glad Judd is back, looking forward to seeing your adventurer tomorrow! :)
Well done Jaquie. I am very happy for you. It will be a big help
I haven't commented before on your videos, but I really wanted to after watching this one. The holistic approach you and your medical team take to your health care is really inspirational! It seems like you've got your doctors on board with addressing root causes rather than treating symptoms and you seem really on top of keeping all of them in the loop and working together. I have chronic illnesses and I am managing my mom's health care as well, and it gets really tiring and disheartening to struggle constantly to get appointments, testing, answers, treatments, keeping things managed properly, etc. So watching you describe your health care and your team gives me hope that I can achieve that for my mom and maybe even for myself. Thank you!
Congrats on the wheelchair approval!! Mine is bright yellow. 🌞♿️
I love how open and honest you are and that you share every aspect of chronic illness :).
Hey Girl! Just wanted to tell you that you inspire me so much, as I’m going through a hard time with getting the treatment and diagnosis I need, so I have to go on home study, which is super disappointing but watching your videos and how optimistic you are, plus what you’re doing with doctors for self advocation is so cool and informational to see! Love you! Keep doing what you’re doing!
I love watching these videos and seeing your resilience constantly through whatever you get thrown at you! I have tn and chronic migraines which is not fun but particuarly insignificant compared to other people but its nice to see the light shown on chronic pain and illnesses and how you personally deal with it all :)
So happy for you! On Friday I have an appointment to try and start getting diagnosed and getting help. So glad you might be starting the new formula soon!
I'm glad your wheelchair got approved by insurance. I love it when you say 'I played Tetris' I guess that what it must be like. You always smile when you are with Harlow. Hi Judd.
This made my day Jaquine. I had a few fainting spells the night prior and this morning with severe stomach cramps. I love coming to your channel and watching your videos. Stay strong as always fam.
Yay I'm so happy you can get your wheelchair! Love you so much thank you for showing us your everyday life❤❤❤
So glad you got your wheelchair approved. I hope your POTS meds get approved too.
Jaquie taking a break from her feeds made her glow so much more in this video. I know it's not a good thing to be happening but I'm glad she got a break and felt better for a little while
Woo hoo on getting your wheelchair approved. I am so sorry the formula is not working and causing you so many issues. Hopefully the new natural formula will work better. And I am happy you have Amber to take you places. That Harlow is so sweet. Kisses for her!
I have recently started watching your channel. In 2005 I started fainting. My bp would shoot up extremely high when I stood up, causing me to have multiple syncope episodes. Took years but finally found an amazing dr in Ohio who treats patients from all over the world with similar issues. I was diagnosed with POTS/ehlers-danlos syndrome vascular. I also have a sister who has been diagnosed with gastroparesis which drs believe is related to my autoimmune disease. She has had a feeding tube but now has a gastric stimulator. Just want you to know you are not alone! Keep going! I realize this video was made awhile ago but was watching your others and decided to comment! Don’t have Instagram but I do have Facebook and will try looking you up. Take care and God bless!! ❤️❤️❤️
Congratulations Jaquie!! I am also waiting for my customize wheelchairs, you are right it will give us more independent to enjoy life. Can't wait for my, i have to wait around 3 to 6 months 😔 but it worth the wait. Hope you enjoy your too!!! My wife and i are fans of your videos!!! We love Harlow, can't get enough of watching her. We wish you all the best health. Peace and joy to you and Judd.
Getting down on Harlow's level means playtime! She is adorable. I'm so glad you can get your exercise done when you feel up to it. It's a struggle for sure with Chronic Illness.
Hey Jaquie! I just wanted to say hi and thank you for the videos you make!! For the past two years I've been struggling with my own chronic battles and your videos are some of the only things that helps me stay positive through the rough patches 😁
Thank you so much for sharing your life. This helps me know I am not alone, and that there is still life outside of these diseases.
So glad we have taken another step to get you what you need!
Oh poor Judd he's been working so hard he looks exhausted bless him! I'm sorry you are struggling right now too, but it looks like you have lots of things coming soon that will help you xx
love you jaquie, been binge watching all your vids. Stay strong we are all rooting for you and supporting you
I'm looking into a custom wheelchair for my postural orthostatic tachycardia syndrome but none of my doctors believe me when it comes to me being so fatigued. They think that I won't walk ever again when I have a wheelchair. I'm trying to figure out which doctors to ask
So very happy for you. Congrats on getting your wheelchair approval but I am a bit ticked off because the insurance won't approve a necessary medication. I don't understand their position. Who the heck works there and what can they be thinking. I hope it all works out for you. Harlow is so funny. She must think you are playing with her when exercising lol. She brightens your day I'm sure. Take care luv.
frances D Insurance companies often don't approve expensive medications when you haven't tried a less expensive alternative.
I have a new Euro style walker and I love it. I have MS and although I can walk with a cane I can't walk very far. Maintaining balance takes a lot of energy. My walker is the next best thing to a supermarket buggy. The only problem is the condescending way well-meaning people treat you. I would like a t-shirt that says "Weak legs don't come with a weak mind." I took it on vacation and did really well but several people told me how 'brave' I was. I smiled but cringed inside. I've decided to be nice and appreciate the good intention, but I wish people would see the 'ability' before the disability. You have such a good relationship with your hubby. I see help and encouragement when you need it and respect and space when you don't.
Jaquie do you watch the Frey life? Mary was just talking about an enzyme cartridge that goes at the end of her feeding tube to help with malabsorption. Is this an option for you?
carissameer I could always ask my doctor but I'm almost certain our malabsorption is caused by different things. If it was an option for me I think I would already be on it, but it never hurts to inquire (though I doubt it is meant for my issues). However with a more broken down formula we are expecting to see improvements (:
Chronically Jaquie praying you have some relief! I'd love to see what your team thinks and if they feel you could benefit from it. ❤
Chronically Jaquie sorry for that, I had problems with cramps/diarrhoea/sickness before I discovered my lactose intolerance, I'm sure you've been checked for nutritional intolerances like lactose or fructose, gluten, what about artificial sweeteners - they're not good for the bowel either, and what about the old formula, was it not compatible with the new tube? or wasn't it good either? because I thought you had to switch it for other reasons (tube/insurance?) maybe I mixed it up
Yay, all good news! Hope Amber faired ok in the hurricane, so great to see judd home😊
Hi, Jaquie, I wanted to let you know that when I am watching your daily vlog and my husband is in the room, he hums along with your opening music!!!!
Jacquie I'm in so much pain😭 my legs hurt so bad and I bashed my elbow really bad when I was getting off a bus and tripped😬 and I'm in so much pain.... My legs are too bad... your videos take my mind off the pain... It so bad... it's too bad... I want it to stop.... I ache so much...
YAY IM SO HAPPY FOR YOU JAQUIE
Hi hun, hope your doing somewhat well. I had to get up at 4:00am from pain. I totally get it. Always luv! I so luv your interaction with Harlo!
I pray that the new formula comes soon,, and that it is accepted by your body. Also thank you so much for encouraging me!
the song played at the 4 min mark is dope. nice job as always, Jaq
Jaq it makes me so happy to see what a great care team you have behind you! I hope to have that soon. ❤️
I'm so happy for you!
I don't mind all the medical talk AT ALL! We're currently on our own #bfam #edsadventure. Neurology today. I totally get it. ;-) you just keep doing you and keep being #chronicallyfabulous ;-P as always 💞
Im so happy for you!!😀😁😁
So glad your wheelchair got approved! It's going to help you so much! I have the TiLite Aero Z and it's helped me so much! Also, I just got my travel pump for my infusions! I'm pretty sure it's the same as yours and I'm excited to be able to infuse on the go!
Hey Jaquie, I also wasnt able to tolerate my first feed formula at all and experienced a lot of pain from it (bloating, diarrhoea, cramping), and it was a bit struggle to change feeds. Although my new feed (which is semi-digested and thus easier on me) is better tolerated I still have diarrhoea and bloating, just less of it. I think it's just something we have to accept because feeding in this way will take a long time to adjust to, which makes sense because it isn't the natural way of feeding. Just wanted to tell you this to forewarn you that whatever new feed you might try might not be perfect because most feeds share similar ingredients. It's likely you'll still experience the bad side effects for a while, but I hope whatever one you get isn't as bad. Good luck!
Love your videos I watch every day #notification squad
SO happy for you Jaquie!!
I love lil Miss Harlow's frog legs when she lies down... aside from being a wonderful service dog, she is so darn adorable!
With your new 'chair, paratransit (Hartflex and Hartplus) may be an option for solo treks. I didn't understand how much of an effect returning to independent transport would have. Your system is better than mine with your Hartflex. Everything here requires a previous day reservation but our general transit system is one of the best in the US and profoundly accessible. Just an idea regarding a mobility option that you haven't mentioned (yet).
I'm SOOOO HAPPY your wheelchair got approved! :D And that it won't cost too much! I'm really curious to see how it's going to work for you and change your life. I'm also curious how you'll like the power assist wheels.
Haha I bet when you were on the floor doing exercises, Harlow thought that you were going to play with her like Judd does while on the floor, especially because you were moving a lot
Harlow is such a good doggo.😂❤️❤️
Yay! I'm so happy for you, congrats on the wheelchair progress!
so happy you got approved for wheelchair. I gave up on ins. paying for massage or chiro. they wouldn't pay for daughters hearing aid either.
W Westbrook they don't pay for my massage either which is why I had to stop. But now we worked it back into our budget.
Chronically Jaquie good for you 😊
acupuncture was helpful too but couldn't afford to go as often as I should have. You are such an amazing person and such the inspiration to so many, including me. Keep up the fabulous work.
Even if insurance approves your medication after appeal, you should check out the PAP anyway. They often have financial assistance and might help with your out of pocket maximums for that drug next year.
I love your spirit. I watched today's blog and as I also watch the Frey life too,Mary has a feeding tube similar to yours. I thought I might mention that she adds "relizorb.com" which is a digestive enzyme cartridge to her feeding tube. I hope it might be a new tool that would help,please have a look.
marilyn valin Mary's malabsorbtion is due to her Cystic Fibrosis which causes her pancreas to not work properly and produce the enzymes she needs.
my dog used to do the same thing when i first started at home pt but now after 3 years he just lays there like “.....are you done yet weird human??” 😂 YAY for insurance approval, it’s such a rare relief!! 💕🥄
Harlow, reminds me of my cousin's late Golden Retriever, who wanted attention, when she didn't get any. Must be a Golden Retriever trait, because her Golden Retriever mix she has now does the same thing and she has a new Golden Retriever puppy.
Toradol worked really well for my migraines and abdominal pain. I really hope it helps you.
My mobility is getting worse. My legs dont work as well as they used to. And since i have severe RA the weather is also a factor, so the changes we have had in the weather has been killing me lately.
I hope your bowel movements improve soon, I couldn't think of much worse, fingers crossed your pain lessens soon. Loved harlows cuteness during your exercise lol
Are you on daily infusions again? I feel like we see infusions daily but maybe not and my daily episodes run together. Hope you are doing better every day! Love seeing you smiling and not in pain from the feeds (hoping the new formula works well)
No, not daily. My typical is 3x a week. :) Doc wants me to start daily again due to dehydration from the runs, but hoping I do not have to with the new formula coming in.
Chronically Jaquie good luck with the injections too! I am looking for a way to get some sort of systemic relief of inflammation and was thinking about ketamine. Can't wait to hear how it goes and I may bring it up to my doc because I heard about them here :)
I FELL DOWN AND BROKE MY ARM FIRDAY JUST WAS IN A LOT OF PAIN BUT AM GETING BETTER THANK GOD . GALD YOU GOT A WHEELCHAIR JAQUIE
YES AND IN A LOTS OF PAIN THANKS
Skyzze FinCham Oh that's horrible! I hope that the doctors have given you good advice and pain relief that helps. I'm not sure what caused you to fall? Is that why you need a wheelchair because you fall?
I hope you feel better!
No I don't need a wheelchair thank god because i can still canl walk. but at frist is was bad could not bent down just hurting and i was in a lot of pain but am get better thanks
THANK YOU AM GETING BETTER
Great news! Judd looked so tired and Harlow is too funny
I do the same exercises for the bulging discs in my lower back!
Yayyy!!! That is awesome! Congrats! 💜
Harlow during your exercises!! ❤️😂
I hope you feel better!
I hope you find something that works. Everyone is different so hopefully they can find something that works for you
Jacquie, those exercises aren't fun! Let's play with the dragon!! Listen it squeaks and it's the best fun!!!! Come on! ---Harlow
Jaquie could you possibly explain/make a video on how you came about getting your diagnoses. Like what steps you took, specialists you saw and how long it took. I suffer from chronic pain and am currently on my diagnoses journey and it's really hard, drawn out process made all the harder by specialists trying to encourage me to give up my search and just take pain meds ( which im already doing anyway). Im pretty sure I have EDS and fibromyalgia but the dr told me there's no point going to a specialist or genetic testing to diagnose it as there's no cure and the only treatment would be pain meds and physical therapy anyway. Just feeling a little disheartened by it all and you always are so positive and give me strength to continue my fight.
Nrg Bunni I have a chronic illness video that goes into detail on this (:
I am having the hardest time getting my insurance to cover a wheelchair!! My cardiologist is working hard to get it approved and he is disgusted by insurance mess!!!
I hope the new formula helps. So sorry about the runs. I have had c.diff. so i understand.
Love the pair of leggings you have on. I've started wearing leggings again after years of not wearing them. I feel more comfortable wearing them again now that I found a few brands that fit me right. I have issues due to my weight in the past year due to gastritis changing my waist size. I also wanted to mention Dollar General has some really nice and soft feeling legging.
Oh hun, I am so sorry the feeds have caused all these problems!!!! MEGA blergh!!! I am happy you have such a fantastic medical team on your side, and today's appt went as well as it did! I'm super excited for you!! You deserve some relief and stability! Btw, I have done 10, 5, and 3 day (at different times) outpatient high dose ketamine infusions (in Clearwater actually!) for my CRPS/RSD. I benefited from them immensely, and had the bonus perk of experiencing improvement to varying degrees with many of my other conditions . If you have any questions feel free to ask away! Also congratulations on the wheelchair approval!!!
ps- can I have your POTS doc? Not only do I not have one here (OU has a great dysautonomia dept, but, that's halfway across the state) he also sounds AMAZING!! 😅
Do you take a betablocker for pots? Or ivabradine? I'm trying to decide which to take. Weighing the positives and negatives of each... I've tried them both so I know what I'm in for.
I hate when insurance won’t pay for things we need . I’m on Medicare and Medicaid and neither wants to help pay for me to get massages which drastically helps my neck pain (I have 2 herniated discs in my neck and 2 in my lower back) even my chiropractor knows it helps and he can’t do anything. :/
For your care plans , how did you go about figuring that out ? the er doc from last night suggested I get a care plan in place because of my gastroparisis and my million other issues
If you live in a large city that has a School of Massage as I do, massages are $25.00. The only other alternative is try to save up for a few and have someone who is willing to learn it go with you and observe the technique. Many years ago living in another state I was in a couple of car accidents and had tons of massage. I could not have recovered without. I had about 100 in my lifetime so I am very good at it but wouldn't want to do it for a job. It takes a lot of strengthI have sold MAPD's and Medicare Supplements for many years and it is not covered by any of them. I do not expect to ever be covered because of Medicare regulations which are getting more stringent every year.
Have you ever inquired about Relizorb by Alcresta Therapeutics? It is an enzyme that connects to the end of your feeding tube before entering your body. Maybe, having this, will calm things down a bit. ☺ Just a suggestion.
Insurance can be very frustrating. I'm at an impasse with mine about my TMD. They won't approve a dental splint but said if I try a dental splint and it doesn't work they will approve surgery. Well I can't afford the dental splint out of pocket. :/ so I just deal with popping and stuff from my jaw.
You were able to exercise! That's so good!
What are those copper things hooked to your bed? Even tho your body isn't liking the formula, your skin looks great. Plus that elephant pillow is cute!
Ps you won't be waiting 3 months. It only takes Ti Lite like 10 days to build typically the clinic tells you 3 months for the insurance process not the building/ ordering process
Hey I was wondering how would have Trump's Healthcare changes affect you specifically if it had been passed? especially with insurance coverage.
She'll be screwed over by it, as will many.
iamwhoiam absolutely ridiculous that US doesn't have public health care!!! Jackie shouldnt be waitibg for her meds to be aproved by a private company. Here its the government that pays 80% or more from of the cost, and of course you can buy them right away!
White Dove I totally agree. Supposedly we are the greatest and wealthiest country, yet health wise people are treated like crap by health coverage, maternity leave, etc. Maybe people whose job it is to approve things should personally go live with people for a few days. Maybe they will grow a heart and see a person who has needs and not a virtual patient on the computer. Our pharmaceutical industry and health care systems are crooks. It is so political really and all about money.
Jaquie has soooo much patience.
Hopefully you reply to comments 🙏. Ok so I just thought of this. If you're shopping or something with a service dog that alerts things, and a random person has the same thing as your service dog is trained for, will the dog help the other person or just stand there because those are not their orders?
Fantastic news! Did you get approval for the power assistance too?
Hi! Firstly, I'd like to say that this is a wonderful thing you're doing. I've been watching your videos for some time, and I'm always struck by how actively you advocate for chronic illnesses and invisible disabilities et cetera! Just wondering, but are there any sites or shops we can visit to support these causes? I've watched your blanket vlog, so I know about that, but is there anything else we can contribute to? Thanks!
Do you know which version of the Kate Farms formula you're getting? I bought some to try to get some nutrition in orally because solid food has been giving me extreme stomach pain over the past few months, as well as some other symptoms, and I was upset to notice that the formula that I bought has carrageenan in it which is a really bad stomach irritant that can cause some pretty intense symptoms. The unflavored peptide plus 1.5 is the only formula that doesn't have it.
lol harlow does a great job of cheering you up!
I lve the paisly/elephant pillow! Us that from wall mart? Also, I hope you get the formula you need. And thank you Hippo, 4 making me laugh
You could always try underwater therapy or whatever it's called- I've heard it helps with weaker joints because water density makes you feel lighter, but it's good exercise. The bills you get are probably so high even with insurance it's insane. America has super overpriced medicine and stuff like that.
Hi Jaquie, Does your POTS Dr specialize in that field? My POTS is overseen by a Electrophysiology Cardiologist, since he diagnosed me with Neurocardiogenic Syncope via Tilt Table Test 20 years ago (I also have separate EP cardiac issues, plus other chronic illnesses). I just wonder if there are doctors more specific to POTS that I'm not aware of, that could find better working treatments for me. Thanks!
XD my walker is red. XD sometimes Chenoa pulls me around in it
I found with my knee trouble that once I gave in and used the wheel chair, I never got out of it. It sort of goes down hill from there. Sorry
Your hair looks so good in this video! Is your hair naturally this straight or do you straighten it?
did you get the power assist for your wheelchair?
Patreon question! Did any of you guys "pay" in €? Reading stuff from vat and so on, does anyone know how much they cost? And did any of you supported only once (and maybe a higher sum) how did that happen? Are there any costs for jaq?
Puppy says if mom is on the ground and the ground is fun it must be play time...... toyssssssssss!!!!!! Lol
Forgive me if you've answered this before. Why do some people choose a transport chair over a regular wheelchair? Is it purely cost-related or are there functional reasons?
Glen Hunt I would assume both (: I can't push myself in a regular WC anyways, only custom, so transport chair made sense when we bought it years ago
And of course, I am so happy that your insurance approved the custom chair!