I love how you view a wheelchair as a tool to assist you, because that's what it is. Many people see wheelchairs as a last resort if they literally cannot walk and they also see using wheelchairs as giving up. I love your mindset and your determination to decrease the stigma.
I also think its a mindset tho. The minute my g. grampa got a wheelchair he immediately stopped walking because he just gave up. Now he is so bad that he cant even stand because he didn't take the time to keep trying, it was just easier with a chair but now his muscles are too weak to hold him. So, just depends on the individual and their mindset a lot of the time. If they aren't determined to keep walking then they just wont walk anymore.
It's going to blow you away how much easier it will make your life! At least if you have the strength to propel it. Even with an ultralight, you will still have a lot of repetitive movements with your arms, and I don't know how your joints will handle that with the ED. You might want to consider a power chair if that's likely to be a problem - and they do make folding ones that will still fit in your car, although I don't think insurance is likely to cover those. At least you are tiny and lightweight yourself, so you will not have as much mass to propel :-) I *had* to get a power chair because of a bad neck and back, and arthritis in both as well as in my shoulders, plus problems with my elbows and wrists. It took me almost 20 years to finally bite the bullet, and I cannot tell you how glad I am that I did! My only regret is not having done it much, much, much sooner. You are absolutely right that it's just a tool, and one you definitely ought to take advantage of. There is simply no point in suffering and putting yourself at risk when the technology exists to make your life easier. Sabrina, you are also dead right that it's a mindset, and that it is really essential to not just give up walking while one still can. Still, having been dealing with increasing chronic pain and debility for close to 60 years now, in hyperdrive for over 35, I can also totally understand the impulse to just give up, especially for older people who have also had increasing issues over a long period of time. The relief is just **so** great by the time they do finally get the chair... And especially with elderly people, they may just not feel that the extra effort is worth it at their age, rightly or wrongly. I have to respect their decisions, because I get it. It really might not be. It may be that it allows them to do things they haven't been able to do in a long time, and just getting out is more desirable than *how* they get out at the end of the day. Exercise can be obtained in many ways. I know I use mine to do things I have *never* been able to do, or haven't been able to do in *decades* - and many of those things I wouldn't have even attempted at all without the chair, so what am I losing by using it instead of walking? Nothing! But I *am* getting out and about, and actually *doing* more, socializing more, doing more fun things again, etc., because I finally *can*. It's a net gain. I find that I'm using mine more than I had expected to, and that is both a good thing and a bad one. It's such a relief to be *able* to do even routine things like grocery shopping (and indeed *any* shopping in a big store) and not be knocked out for days that I now pretty much use it as a matter of course when I am doing something like that - and then I make sure I walk for everything else I'm doing that day, unless, of course, I am having a particularly bad day. Sometimes I go weeks or months without touching the chair, and then I'll end up using it all day every day for 3-4 days; it all depends on what is active and how active *I* need to be, and with what. I'm still trying to find the right balance and pattern for my own needs; that's obviously something that every person needs to sort out for their own self. There's a great book that helped me make the decision, and which really helped put the whole notion of the necessity (or lack thereof) of continuing to walk vs using any sort of mobility device in perspective for me that I highly recommend to anyone contemplating this move, especially if they are reluctant, and to people just trying to understand *why* someone would choose such a device while still ambulatory - and why they might use it more often than not. It's called "When Walking Fails: Mobility Problems of Adults with Chronic Conditions", by Lisa Iezzoni. www.amazon.com/When-Walking-Fails-Mobility-Conditions/dp/0520238192. It's a real eye-opener on a lot of levels.
Hi Jaquie!❤ I've been watching your vlogs for about 5 months now but I've gone way back and watched really old vlogs. You're getting so healthy and I'm so proud of you when you get up and are productive!
Hey Jaq! Love all your vlogs. I have a video idea! I think it would be awesome if you did a "Myths and Misconceptions" video, such as the wheelchair misconception. I think it would be in line with the message you're trying to spread.
fellow POTSie here. it is keeping me in the house too. I am also wondering when I should start thinking about a wheelchair. It helps me to see how somebody else manages life with illness. Already got some good lifehacks from you. thank you!
C M I am a POTSie too that is newly diagnosed and this Vlog has helped immensely. It's hard to admit I need a walker sometimes and I feel guilty but I'm learning its more important to listen to my body!
If you can't leave the house, it's time! I started off using a wheelchair at the mall and 6 months later I have my own custom Tilite ZRA. It's made my life 100x easier and I WANT to leave the house because I'm not in agony when I get home. (I have severe chronic pain from Tourette Syndrome and endometriosis + chronic fatigue)
Dang, that's some serious ticcing then! My sympathies. (Fellow TSer here, but my tics are more occult.) I also started out by renting scooters, actually, when I was out of town on a couple of trips, and thought that was what I was going to get. My local Center for Assistive Technology impressed upon me why an actual power wheelchair would be better for me overall, and I haven't looked back. The point is to get *anything* that will help - and it will in fact make the world of difference! I was actually mostly housebound for a few years before I got my chair, so it's taken some time to try to just change the patterns, but what a difference.
Jaquie! I just tried the Walmart grocery pickup service today for the first time and it was so cool! You order everything online or through their app and then just go park and they bring everything out and even load it for you! You should really check into it! I don't know if I'll ever go back INSIDE walmart with 2 kiddos ever again lol!
Candace Gray That's awesome! I was at Walmart last night and I saw a sign that they offer a discount if you order things online and then come and pick them up. I'll have to check it out and see if groceries are included in the discount! Even if they don't, it's a REALLY cool service that they offer!
I would do this BUT the only walmart that offers it in our area is outside of my driving radius... And in a not so great area. So it is a bit difficult at the moment but I think our walmart might start it up. I can hope!
Of course, totally understandable! We have another walmart about 20 minutes away in the next town that sometimes will have more in stock as it is a much bigger city but still i do not like to take my kids there as it isnt a great area. And obviously your driving radius is in place for your safety so that is also very important! Thumbs up for staying safe :) and here is to hoping your walmart soon adds the pickup option for the days when you dont feel up to being in the store!
I just happened to find your channel yesterday. I almost cried. I have several chronic illnesses and unfortunately my friends have fallen off a over the last few years. I was diagnosed with POTS recently. I was working as an RN for 15 years. I was changing position within my career. My last position was an office position. I miss my career, but I miss my patients the most. I have about 15 Chronic conditions. I have a small dog that my physician and I are trying to find out what we need to to so he is a Therapy Dog. He knows when I am going to pass out, if I am not feeling well. He stays in the bathroom with me when I am showering and he sense it is a bad day. Sometimes just showering wipe me out for the day. This week has been hard. I had to go to one of my doctors that is 2.5 hours away. That was Thursday And I feel better, but not back to my base line. I am SO glad there someone out there that understands. I hope you have a blessed ans wonderful day.
Jaquie, I'm a fellow POTSie and EDSer. I am a part time wheelchair user, and it took me a long time to accept it as a tool. I cannot explain how much it has helped me get out and have a more normal life
Hard cPTSD day already and I'm going to see Planet of the Apes in a few hours. So much sound, sights and motion; it's gonna be rough. Good to see your posts on days like this, not because misery loves company, but *challenge overcomers* love company.
I asked my daughter to try your orzo recipe. She loves to cook! She is 17 and has several chronic illnesses, as well. We will shop for the ingredients tomorrow. We are really looking forward to adding this to our side dish rotation! Thanks for being so transparent and awesome. You're an encouragement even to those of us without chronic illnesses!!
I love the summer because I can watch your vlogs at about 10 am my time every day without having to be in school. These videos are what I look forward to.
Have lupus and I've had to re learn how to walk last year.. First I got really weak so I started to use a wheelchair.. The hard part was accepting when I needed it. But it was a big help.
Jessica Ortega I really wish people wouldn't judge when someone uses wheelchairs just because they don't have a visible illness. I have cystic fibrosis and when I'm admitted into the hospital I always use a wheelchair for two reasons 1 because I'm hooked up to so many different antibiotics and people are rude and bump right into to (they could pull out my catheter 2 because I'm so exhausted it's nice to get out but I get tired just going down the elevator. When I'm out in public I sometimes use the motor carts and I get so many comments stares or people will confront me face to face. Some times it pisses me off and sometimes I know some don't know better. But I just wish people would have open minds about things
TiLite is the best wheelchair brand for custom manual wheelchairs! It's very light and easy to load! I also have a SmartDrive power assist wheel! You may want to ask about those two things when talking to a wheelchair distributor.
Ashley Keen Wish smart drives were available here. I'm a powerchair user but would be nice to have something that fits in a car for those situations lol
I have a custom wheelchair and I really love it and it helps me so much. I use it for long distance. I have to have an electric chair now because of the EDS but I have a mobility van and a carer so it isn't a problem. But for years a normal manual custom wheelchair was really good for me :)
💓💓💓 I don't have chronic Illnesses, but I have had Bronchitis and the flu 11 times each. It's insane how strong you are and how amazingly take care of yourself so great. Some people have to stay at the hospital to get that done.
Hi! I also have POTS and just got a wheelchair this week. It has been really helpful and I was able to go to the store for much longer than I used to. It's really been a big help!
I'm a wheelchair engineer and a user. We purposely design them for all kinds of people and their unique disability. That definitely includes people that can walk. Good luck with your appointment with the ATP (the person that says what type of wheelchair will be good for you).
The Oreo Os! It was my favorite cereal as a kid! I told my grandma about how they are back after watching your other video of you getting them and she got me two boxes so thank you for bringing my attention to it. So grateful for you and happy that your new walker is working so well!
😄 You're mom was funny in the car! Glad the doctor went well. I have a wheelchair (which now my grandmother is using she lives with us, but if needed we rent one for me) I'm supposed to walk as much as i can to but for example Disney.... No way. It will also give Hippo those breaks, and keep you safe.
The best wheelchairs are Quickie!!! THEY ARE AMAZING!!!! I currently have a TiLite and it is JUNK!!! I am due for a new chair in August (eligible every 5 years) and I am going back to a Quickie!
I'm just loving having the parents hanging out! Good decision on the wheelchair, dear! Each additional tool adds more benefit. You are in my prayers daily -
I got my custom Tilite ZRA two weeks ago and.... I'M IN LOVE!!! Now that it's adjusted, pushing myself is sooo easy. The chair is ridiculously light and simple to take apart and lift. I HATED pushing myself in a 35+ lb wheelchair, unless it was on 100% flat/smooth floor tile. My husband and I hated lifting it in and out of the house. I couldn't get over curbs by myself and now I can. RESEARCH like crazy before you go to a DME. I love my chair because I knew exactly what I wanted and the only way I knew was by learning everything I could. I trialed a couple chairs then we put the best parts into one chair. I read the CareCure forums, watched UA-cam videos, and Google'd a LOT. You can cut 15 lbs off a chair just by choosing the right parts. I have a rigid titanium frame, Jay3 solid back instead of a seat sling (ick), Roho air cushion, upgraded footplate and brakes, 5" soft roll casters, solid tires instead of air, and standard hand rims. I want better hand rims, but I'm waiting until I'm *ahem* more "spatially aware" of my chair. ;) FWIW, I have severe upper back and shoulder/neck/arm pain. Surprisingly pushing doesn't make the pain worse. I am sore but it just feels like I worked out.
I also have a walker but I only use it if I'm grocery shopping alone. Yes the walker helps with preventing falls, but it doesn't relieve the STRESS of feeling like you're gonna fall. For weeks, I wouldn't leave the house without my husband. Well, now that I have the wheelchair neither of us worries about it. I feel relaxed and can focus on the task at hand vs. how much pain I'm in, whether or not I'm gonna fall etc With your POTS and EDS, a power chair may be more suitable.... but talk to your doctor. :)
I love your vlogs. You are so confident while out with Harlow, you have boosted my confidence with being out with my service dog. I look forward to your vlogs everyday and I hope everything gets better for you, I'm praying for you.
I understand your need for a wheelchair! I an a fellow POTS patient. Some days I can't walk due to POTS so I have to use a wheelchair so I can do things with my family. It's way better than passing out multiple times in one outing. I'm glad you looking in to this option with your doctor! It's been real beneficial for me
Jaquie, there's no shame in getting a wheelchair at all. I live on a wheelchair and they asked me if I wanted to start walking, and I never saw a benefit in the long run. I'm proud of that. Keep strong, Jaquie.
You always make me smile!! It's so nice to not be alone in my fight. I don't have knowledgeable drs here and it's been frustrating ang as hell!! Like I'm feeling like this for some some else to do.....😰
hi jaquie!! i am a PT wheelchair user!! i have a lightweight one as well, and it has given me soooooooooooooooo much independence. its all black and has a patch on it that says 'leave me alone'!!!
Because of you and Janeine we are doing a raw diet for our dogs and cat! I did a huuuuuge prep day and really enjoyed portioning food and making their meals myself. :)
U are so inspiring. With my chronic illness almost every time i go shopping at the mall have to use a wheelchair because i wouldn't be able to shop. it also helps because after I don't feel tired.
I haven't been a viewer for a long time, only a few days, but I totally freaked out when you said Orlando because I also live in Orlando xD. I myself suffer from narcolepsy, diabetes and extreme schizophrenia, and your videos have really helped me! Thank you!
I've found a huge difference in how my body has been coping since I got a rollator. It means I always have support and a seat. They are amazing things! We have a wheelchair for those bad days but I've found its my POTS that affects my walking more than my EDS sometimes. The crash after the walking is the worst. Its important to help your body as much as you can and if a wheelchair is that, then so be it! Another great vlog! (I also have a pink rollator too)
I am a dyalisis patient and have a prosthetic. My doctor suggested a wheelchair for me because walking long amounts of time on most days is difficult for me.I just don't have the stamina to do so.The custom wheelchair is nice because it is made for my needs.I know I get stares sometimes because at the grocery store if I can't reach something I stand up put of the chair to get it.I don't personally care what anyone thinks because it helps me be able to get out and do things. I really enjoy your videos. Take care.
I can't get enough of Jaquie saying "blueberries" and "vitamins". My grandma used to pronounce them that way as well, so it's weirdly satisfying to hear.
My daughter has a ' power assist' wheelchair. You still push it with your hands but it gives every push the power of several.. less fatigue and stress on body. Just a thought if you look at chairs. Great for long distance, mall, etc
I am a partial wheelchair user. I had paralysis on my right side and while it still isn't great I am able to walk around more now with an afo. The dr recent suggest POTS could be some of my problem with my heart. I have had a wheelchair before this suggestion but I have a rigid light weight chair and when I need it it's great. I'd suggest looking at a power assist like Smart Drive. I never wanted one but with my lack of strength at times it really helps. Also the tires. I have flexrims I believe and they have a little rubber grip between the handrim and tires and it really helps with my dexterity issues :)
My self n my granddaughter have Dysautonomia I my self have a mild case not so my granddaughter glad to hear about ur vloging on this thanks for sharing
I have two custom wheelchairs. One is manual and the other is power. My power one is broken right now which sucks! The best manual chair I have found is the quickie 2.
Obviously this isn't even nearly as bad as your condition but wth my arthritis it's awful I can't stand or walk for too long I can stand maybe 5 minutes before my ankles give out and 15 before my knees start to ache it's horrible
If the HCPS code for the custom wheelchair is K0013, the request will most likely have to be sent for review because they usually also ask for some units of K0108 that definitely have to be reviewed. But your complete medical records with the doctor will go a long way in that process. :)
Definitely look into power assist wheels! I have POTs along with Lyme plus a few other diseases that causes horrible chronic pain. I am a full time user right now. Regular wheels are hard to push for us who are weak even if it is an ultra light weight chair. I have Alber Twion wheels that I can't live without. Smart drive is another option that others love. Once I got my custom chair my independence changed drastically. Wheelchairs are awesome tools. I have a Quickie 7R that I love along with the power wheels. Please message me if you have any questions.
And oh my goodness, I would so geek out on getting new tech! Get a glow in the dark paint job, maybe something like they do with Pandora Land and black lights!
I have had a custom wheel chair sense I was in 8th grade. That is when I started showing symptoms of pots but of course no one knew what what is was.I was thankful to have that wheelchair while finishing my degree I couldn't have finished it without it. ps. It's hot pink!
physical therapy and mobility aids have helped my crashing so much! it still happens (esp after grocery shopping) but i've learned how to control and build stamina to the best of my ability x
Jaq!!! I love your videos!!! You have been such an inspiration to me! I just want to let you know how much these blogs mean to me!! Hang in there! Sending love ❤️❤️
Hey Jaquie, I have orthostatic hypotension. I use compression stockings and they really help keep the blood where it needs to go (not extra in my legs). I helps prolong my standing and especially walking time without passing out and with those symptoms that go along with it. I have commented this before, but with how things are going i wanted to make sure you saw this. Just thought it might help along with the wheelchair, and even on the better days. Good luck and prayers!
I'm having a minor surgery today, and I'm really nervous. Anastasia sets off my digestive symptoms in a very painful, debilitating way and it makes my POTS flare. My allergist thinks this is mast cell related, so I'm loading up on antihistamines this time. Hopefully it works. I'm savings today's vlog for something to watch when I get home from the hospital. Thanks for being there for all of us when we're down and out. Even though it's just a UA-cam video, it makes me feel like I'm spending time with a friend who understands my chronic illness struggle.
Glad you got the x-rays. I've seen an annoying comment on here several times about her walking and I knew you were a considerate dog carer and this just proves it lol
Hopefully you can get a custom-made set of wheels - I have my "Küschall K4" (a swiss company) for a couple of months now and it has been THE ABSOLUTE game changer concerning my mobility and pain relief. It's a light weight, wonderful tool for my MS. Better have one sooner than later. My quality of life changed drastically for the better. Feel free to ask anything you want to know, ok?
Hi Jaquie! Do you use compression wear for your POTS sypmtoms? I'm curious because I was told to wear them, but I find that they make my circulation worse.
Also I have decided to use a wheelchair until I can get a diagnosis on why I am sooo lightheaded while walking thanks to u for giving me the confidence!
I have back issues where fluid builds up in my spine and it makes me struggle to walk. Wheelchair has saved my life. its not a last resort its a tool like you said!
Hi jaquie as a full time wheelchair user I'm really happy for you and I'm on tri care and I'm pretty sure they would cover it it also should help with people doubting the need for the chair because it is costume made people know you need a doctor to proscribed it before when I was younger and didn't have a costume one people were like oh she to young and faking so I think it will really help you also you'll need a wheelchair clip for Harlow bold lead designs makes a good one or you can do what me and Luca (my service dog) do and use a big hiking clip ps. Thanks for posting the fridge training video Luca and I learned it from that and now Luca is 2 as of June 4 and completely done with training though we find new things to work on every day
I use the electric carts at walmart. EVERY TIME! I used to try and not and use either my walker or just sit on the floor 😀 (locally all the stores don't even look twice at me on the floor anymore hehe). Every single time I'd get to the car after shopping I'd throw up. Once using the chair that stopped (mostly). In the winter I have the same issue because we have so many Snow birds. We more then double in population. Sometimes I just sit and wait until one is ready.
Good luck with the wheelchair. My insurance told me I had to have 5 documented falls prior to authorization. The Muscular dystrophy association set me up with one that my husband pushes me. I hope everything goes well!
Every time I get up & do anything, I have a near syncope spell. I also sit when that happens. I've passed out once from a hypoglycemia episodes, I'm considering a walker like the new one you have. I don't think I'm ready for a wheelchair
Chronically Jaquie I have an appointment with my primary doc for the purpose of ordering it for me. It's warranted & my insurance covers it; but apparently need a face-to-face visit just for this to satisfy insurance. Thanks Jacquie
I realize this I am older video, but I'm just not watching it. After hearing you describe pots, I realized my doctor thought I might have it as well. I didn't realize what it was fully until you explained it and showed the effects. I have suffered from undiagnosed vertigo the last two years. One of my last doctors visits showed evidence of possible pots. They tried to send me to a cardiologist, but I never made the appointment because I thought they were wrong. But, given that for the past few months it has been increasingly harder to stand and walk for long distances at certain times, my legs feel like jelly and I feel a pulling as if I need to sit down. My vertigo doesn't help, and I need to steady myself when walking or standing. Ugh, the reality is hitting me. Maybe I will go make that appointment...
I have a Quickie ultra light weight chair and I love it! I also use the SmartDrive MX2+ which I think would be a great option for you! Don't hesitate to reach out if you have any questions!
*May be helpful for Jaquie* I'm in literally EXACTLY the same position with my PoTS and I've been using crappy, heavy rental wheelchairs for about 3 months which is killing my joints. I've been scared to buy a custom one as I wasn't diagnosed with anything yet and I thought maybe they'd make me better. But my pain and fainting made (crappy) mobility devices necessary. But I've now been diagnosed with EDS and PoTS so we're going ahead and ordering a custom one and I'm SO looking forward to having it. I thought I should mention it because we have very similar issues and reasons for needing the chair. So I wanted to suggest you look into Ki Mobility Rogue wheelchair as it's the one I've found is best for my needs. I need the lightest possible chair, with special hand rims to minimize joint pain in wrists and fingers, and this is the best option out there (I've been researching my butt off). It's ALL completely custom and has great reviews. I would definitely recommend looking into it :) Loads of love and spoons! 💜
I've got an electric wheelchair because of my EDS, my hips dislocate as soon as i stand up, I've tried physical therapy, it didn't work for me, hope you figure out what's best for you.
What about a portable mobility scooter for your bad days? I use a transport chair for my 9 year old son with autism when we go on big outings. Whatever makes it easier to live your life!
Hi Jaquie! I have a question if you don't mind. Does your POTS cause you issues when showering? I have a horrible time with showering. If the shower is too hot, I become faint, my heart starts racing, and when I get out of the shower I can barely walk. I become extremely sweaty and thirsty (FYI I drink 60-90 oz of water daily--I use one of the 30-ounce hospital mugs for water intake and drink 2-3 of them daily, so I don't think I am dehydrated). I have two Autoimmune conditions (Hashimoto's Thyroiditis, with multiple enlarged Parathyroid glands and also Antiphospholipid Syndrome-specifically Lupus Anticoagulant. The Hashimoto's comes with cold intolerance so I am confused as to what could be causing the heat intolerance. Just wondering if you experience these reactions with showering. I am thinking of discussing POTS with my Dr. on Aug. 2. Thank you, I hope you are feeling better today!
I currently am in the process of going to get evaluated by my doctor for a wheelchair and an insurance covered walker. I find that using a cane right now is more for my valance and safety, but it does little to nothing compared to a wheelchair and a walker.
I think with a manual wheelchair if you have upper body issues try and get something powered or power assist as for me it kills my shoulders and wrists/hands to self propel and it also triggers my post exertional malaise as it is like cardiovascular exercise lol
I love how you view a wheelchair as a tool to assist you, because that's what it is. Many people see wheelchairs as a last resort if they literally cannot walk and they also see using wheelchairs as giving up. I love your mindset and your determination to decrease the stigma.
I also think its a mindset tho. The minute my g. grampa got a wheelchair he immediately stopped walking because he just gave up. Now he is so bad that he cant even stand because he didn't take the time to keep trying, it was just easier with a chair but now his muscles are too weak to hold him. So, just depends on the individual and their mindset a lot of the time. If they aren't determined to keep walking then they just wont walk anymore.
Exactly, it is an additional tool! Some days I need it, other days I do not. I think it will be very helpful, particularly for long distance!
I use mine about 3x a week and it's made it easier to walk on the days I don't use it because I'm in less pain.
It's going to blow you away how much easier it will make your life!
At least if you have the strength to propel it. Even with an ultralight, you will still have a lot of repetitive movements with your arms, and I don't know how your joints will handle that with the ED. You might want to consider a power chair if that's likely to be a problem - and they do make folding ones that will still fit in your car, although I don't think insurance is likely to cover those. At least you are tiny and lightweight yourself, so you will not have as much mass to propel :-) I *had* to get a power chair because of a bad neck and back, and arthritis in both as well as in my shoulders, plus problems with my elbows and wrists.
It took me almost 20 years to finally bite the bullet, and I cannot tell you how glad I am that I did! My only regret is not having done it much, much, much sooner. You are absolutely right that it's just a tool, and one you definitely ought to take advantage of. There is simply no point in suffering and putting yourself at risk when the technology exists to make your life easier.
Sabrina, you are also dead right that it's a mindset, and that it is really essential to not just give up walking while one still can.
Still, having been dealing with increasing chronic pain and debility for close to 60 years now, in hyperdrive for over 35, I can also totally understand the impulse to just give up, especially for older people who have also had increasing issues over a long period of time. The relief is just **so** great by the time they do finally get the chair... And especially with elderly people, they may just not feel that the extra effort is worth it at their age, rightly or wrongly. I have to respect their decisions, because I get it. It really might not be.
It may be that it allows them to do things they haven't been able to do in a long time, and just getting out is more desirable than *how* they get out at the end of the day. Exercise can be obtained in many ways.
I know I use mine to do things I have *never* been able to do, or haven't been able to do in *decades* - and many of those things I wouldn't have even attempted at all without the chair, so what am I losing by using it instead of walking? Nothing! But I *am* getting out and about, and actually *doing* more, socializing more, doing more fun things again, etc., because I finally *can*. It's a net gain.
I find that I'm using mine more than I had expected to, and that is both a good thing and a bad one. It's such a relief to be *able* to do even routine things like grocery shopping (and indeed *any* shopping in a big store) and not be knocked out for days that I now pretty much use it as a matter of course when I am doing something like that - and then I make sure I walk for everything else I'm doing that day, unless, of course, I am having a particularly bad day. Sometimes I go weeks or months without touching the chair, and then I'll end up using it all day every day for 3-4 days; it all depends on what is active and how active *I* need to be, and with what. I'm still trying to find the right balance and pattern for my own needs; that's obviously something that every person needs to sort out for their own self.
There's a great book that helped me make the decision, and which really helped put the whole notion of the necessity (or lack thereof) of continuing to walk vs using any sort of mobility device in perspective for me that I highly recommend to anyone contemplating this move, especially if they are reluctant, and to people just trying to understand *why* someone would choose such a device while still ambulatory - and why they might use it more often than not. It's called "When Walking Fails: Mobility Problems of Adults with Chronic Conditions", by Lisa Iezzoni. www.amazon.com/When-Walking-Fails-Mobility-Conditions/dp/0520238192. It's a real eye-opener on a lot of levels.
Hi Jaquie!❤ I've been watching your vlogs for about 5 months now but I've gone way back and watched really old vlogs. You're getting so healthy and I'm so proud of you when you get up and are productive!
Hey Jaq! Love all your vlogs. I have a video idea! I think it would be awesome if you did a "Myths and Misconceptions" video, such as the wheelchair misconception. I think it would be in line with the message you're trying to spread.
Vanna Banana such a good idea! Hope something like that goes viral and educate people!
That's very good idea!
That is an awesome idea! I will add it to the list (:
I'm finally accepting that I'm super weird because I always skip the opening scene as fast as I can cause I don't want to watch spoilers! 😂
fellow POTSie here. it is keeping me in the house too. I am also wondering when I should start thinking about a wheelchair. It helps me to see how somebody else manages life with illness. Already got some good lifehacks from you. thank you!
C M I am a POTSie too that is newly diagnosed and this Vlog has helped immensely. It's hard to admit I need a walker sometimes and I feel guilty but I'm learning its more important to listen to my body!
So happy my story has helped fellow POTSies!
C M I'm a POTSie too ❤️❤️ I love watching Jaquie
If you can't leave the house, it's time! I started off using a wheelchair at the mall and 6 months later I have my own custom Tilite ZRA. It's made my life 100x easier and I WANT to leave the house because I'm not in agony when I get home. (I have severe chronic pain from Tourette Syndrome and endometriosis + chronic fatigue)
Dang, that's some serious ticcing then! My sympathies. (Fellow TSer here, but my tics are more occult.)
I also started out by renting scooters, actually, when I was out of town on a couple of trips, and thought that was what I was going to get. My local Center for Assistive Technology impressed upon me why an actual power wheelchair would be better for me overall, and I haven't looked back. The point is to get *anything* that will help - and it will in fact make the world of difference!
I was actually mostly housebound for a few years before I got my chair, so it's taken some time to try to just change the patterns, but what a difference.
Jaquie! I just tried the Walmart grocery pickup service today for the first time and it was so cool! You order everything online or through their app and then just go park and they bring everything out and even load it for you! You should really check into it! I don't know if I'll ever go back INSIDE walmart with 2 kiddos ever again lol!
Candace Gray thats a good ideal! but i think she like to walk around a little and get some exercise
Candace Gray That's awesome! I was at Walmart last night and I saw a sign that they offer a discount if you order things online and then come and pick them up. I'll have to check it out and see if groceries are included in the discount! Even if they don't, it's a REALLY cool service that they offer!
I would do this BUT the only walmart that offers it in our area is outside of my driving radius... And in a not so great area. So it is a bit difficult at the moment but I think our walmart might start it up. I can hope!
Of course, totally understandable! We have another walmart about 20 minutes away in the next town that sometimes will have more in stock as it is a much bigger city but still i do not like to take my kids there as it isnt a great area. And obviously your driving radius is in place for your safety so that is also very important! Thumbs up for staying safe :) and here is to hoping your walmart soon adds the pickup option for the days when you dont feel up to being in the store!
Chronically Jaquie how about just order online and get it delivered at your home? They have free delivery service after I think 50 bucks.
I just happened to find your channel yesterday. I almost cried. I have several chronic illnesses and unfortunately my friends have fallen off a over the last few years. I was diagnosed with POTS recently. I was working as an RN for 15 years. I was changing position within my career. My last position was an office position. I miss my career, but I miss my patients the most. I have about 15 Chronic conditions. I have a small dog that my physician and I are trying to find out what we need to to so he is a Therapy Dog. He knows when I am going to pass out, if I am not feeling well. He stays in the bathroom with me when I am showering and he sense it is a bad day. Sometimes just showering wipe me out for the day. This week has been hard. I had to go to one of my doctors that is 2.5 hours away. That was Thursday And I feel better, but not back to my base line. I am SO glad there someone out there that understands. I hope you have a blessed ans wonderful day.
Jaquie, I'm a fellow POTSie and EDSer. I am a part time wheelchair user, and it took me a long time to accept it as a tool. I cannot explain how much it has helped me get out and have a more normal life
Hard cPTSD day already and I'm going to see Planet of the Apes in a few hours. So much sound, sights and motion; it's gonna be rough. Good to see your posts on days like this, not because misery loves company, but *challenge overcomers* love company.
I asked my daughter to try your orzo recipe. She loves to cook! She is 17 and has several chronic illnesses, as well. We will shop for the ingredients tomorrow. We are really looking forward to adding this to our side dish rotation! Thanks for being so transparent and awesome. You're an encouragement even to those of us without chronic illnesses!!
I love the summer because I can watch your vlogs at about 10 am my time every day without having to be in school. These videos are what I look forward to.
Have lupus and I've had to re learn how to walk last year.. First I got really weak so I started to use a wheelchair.. The hard part was accepting when I needed it. But it was a big help.
Jessica Ortega I really wish people wouldn't judge when someone uses wheelchairs just because they don't have a visible illness. I have cystic fibrosis and when I'm admitted into the hospital I always use a wheelchair for two reasons 1 because I'm hooked up to so many different antibiotics and people are rude and bump right into to (they could pull out my catheter 2 because I'm so exhausted it's nice to get out but I get tired just going down the elevator. When I'm out in public I sometimes use the motor carts and I get so many comments stares or people will confront me face to face. Some times it pisses me off and sometimes I know some don't know better. But I just wish people would have open minds about things
TiLite is the best wheelchair brand for custom manual wheelchairs! It's very light and easy to load! I also have a SmartDrive power assist wheel! You may want to ask about those two things when talking to a wheelchair distributor.
Ashley Keen Wish smart drives were available here. I'm a powerchair user but would be nice to have something that fits in a car for those situations lol
They are available but I don't have a spare few grand lol
Sarah Smith where are you located?
I have a ti lite and mines in no way light or easy to load lol but I do love my chair
kpopfan forever77 mine is very light! I think it depends on style and model!
I have a custom wheelchair and I really love it and it helps me so much. I use it for long distance. I have to have an electric chair now because of the EDS but I have a mobility van and a carer so it isn't a problem. But for years a normal manual custom wheelchair was really good for me :)
💓💓💓 I don't have chronic Illnesses, but I have had Bronchitis and the flu 11 times each. It's insane how strong you are and how amazingly take care of yourself so great. Some people have to stay at the hospital to get that done.
Hi! I also have POTS and just got a wheelchair this week. It has been really helpful and I was able to go to the store for much longer than I used to. It's really been a big help!
I'm a wheelchair engineer and a user. We purposely design them for all kinds of people and their unique disability. That definitely includes people that can walk. Good luck with your appointment with the ATP (the person that says what type of wheelchair will be good for you).
The Oreo Os! It was my favorite cereal as a kid! I told my grandma about how they are back after watching your other video of you getting them and she got me two boxes so thank you for bringing my attention to it. So grateful for you and happy that your new walker is working so well!
😄 You're mom was funny in the car! Glad the doctor went well. I have a wheelchair (which now my grandmother is using she lives with us, but if needed we rent one for me) I'm supposed to walk as much as i can to but for example Disney.... No way. It will also give Hippo those breaks, and keep you safe.
The best wheelchairs are Quickie!!! THEY ARE AMAZING!!!! I currently have a TiLite and it is JUNK!!! I am due for a new chair in August (eligible every 5 years) and I am going back to a Quickie!
your mom is so awesome. Harlow does the cutest thing
I'm just loving having the parents hanging out! Good decision on the wheelchair, dear! Each additional tool adds more benefit. You are in my prayers daily -
I got my custom Tilite ZRA two weeks ago and.... I'M IN LOVE!!! Now that it's adjusted, pushing myself is sooo easy. The chair is ridiculously light and simple to take apart and lift.
I HATED pushing myself in a 35+ lb wheelchair, unless it was on 100% flat/smooth floor tile. My husband and I hated lifting it in and out of the house. I couldn't get over curbs by myself and now I can.
RESEARCH like crazy before you go to a DME. I love my chair because I knew exactly what I wanted and the only way I knew was by learning everything I could. I trialed a couple chairs then we put the best parts into one chair. I read the CareCure forums, watched UA-cam videos, and Google'd a LOT. You can cut 15 lbs off a chair just by choosing the right parts.
I have a rigid titanium frame, Jay3 solid back instead of a seat sling (ick), Roho air cushion, upgraded footplate and brakes, 5" soft roll casters, solid tires instead of air, and standard hand rims. I want better hand rims, but I'm waiting until I'm *ahem* more "spatially aware" of my chair. ;)
FWIW, I have severe upper back and shoulder/neck/arm pain. Surprisingly pushing doesn't make the pain worse. I am sore but it just feels like I worked out.
I also have a walker but I only use it if I'm grocery shopping alone. Yes the walker helps with preventing falls, but it doesn't relieve the STRESS of feeling like you're gonna fall. For weeks, I wouldn't leave the house without my husband. Well, now that I have the wheelchair neither of us worries about it. I feel relaxed and can focus on the task at hand vs. how much pain I'm in, whether or not I'm gonna fall etc
With your POTS and EDS, a power chair may be more suitable.... but talk to your doctor. :)
Aww the feels. Harlow following you out the door. So sweet.
I always know it's really time to sleep after I watch your video because it's always after 1am 😂😂
Mines at like 8 am 😂
Mine is at 9AM
Kayla Egan 6 pm here😂
Haha same for me too im in Melb Aus, I usually watch before I go to sleep ☺😂
I love your vlogs. You are so confident while out with Harlow, you have boosted my confidence with being out with my service dog. I look forward to your vlogs everyday and I hope everything gets better for you, I'm praying for you.
I understand your need for a wheelchair! I an a fellow POTS patient. Some days I can't walk due to POTS so I have to use a wheelchair so I can do things with my family. It's way better than passing out multiple times in one outing. I'm glad you looking in to this option with your doctor! It's been real beneficial for me
Using the wheeelchair sounds like a good idea. I know a lot of friends who use a wheelchair for going out with pots. Gives them new quality of life!
Jaquie, there's no shame in getting a wheelchair at all. I live on a wheelchair and they asked me if I wanted to start walking, and I never saw a benefit in the long run. I'm proud of that. Keep strong, Jaquie.
Nope, no shame at all!
You always make me smile!! It's so nice to not be alone in my fight. I don't have knowledgeable drs here and it's been frustrating ang as hell!! Like I'm feeling like this for some some else to do.....😰
hi jaquie!! i am a PT wheelchair user!! i have a lightweight one as well, and it has given me soooooooooooooooo much independence. its all black and has a patch on it that says 'leave me alone'!!!
Because of you and Janeine we are doing a raw diet for our dogs and cat! I did a huuuuuge prep day and really enjoyed portioning food and making their meals myself. :)
Fainting and fainting spells sound really scary. I'm so glad you've got two walkers plus a wheelchair soon 💜
U are so inspiring. With my chronic illness almost every time i go shopping at the mall have to use a wheelchair because i wouldn't be able to shop. it also helps because after I don't feel tired.
I haven't been a viewer for a long time, only a few days, but I totally freaked out when you said Orlando because I also live in Orlando xD. I myself suffer from narcolepsy, diabetes and extreme schizophrenia, and your videos have really helped me! Thank you!
I've found a huge difference in how my body has been coping since I got a rollator. It means I always have support and a seat. They are amazing things! We have a wheelchair for those bad days but I've found its my POTS that affects my walking more than my EDS sometimes. The crash after the walking is the worst. Its important to help your body as much as you can and if a wheelchair is that, then so be it! Another great vlog! (I also have a pink rollator too)
I recently bought my first wheelchair and just going grocery shopping in it was such a joyful experience and I was actually able to enjoy things again
I am a dyalisis patient and have a prosthetic. My doctor suggested a wheelchair for me because walking long amounts of time on most days is difficult for me.I just don't have the stamina to do so.The custom wheelchair is nice because it is made for my needs.I know I get stares sometimes because at the grocery store if I can't reach something I stand up put of the chair to get it.I don't personally care what anyone thinks because it helps me be able to get out and do things. I really enjoy your videos. Take care.
You are a strong person. I will be praying for you to get better.
I can't get enough of Jaquie saying "blueberries" and "vitamins". My grandma used to pronounce them that way as well, so it's weirdly satisfying to hear.
Notification was late but I'm still here 😁
My daughter has a ' power assist' wheelchair. You still push it with your hands but it gives every push the power of several.. less fatigue and stress on body. Just a thought if you look at chairs. Great for long distance, mall, etc
Yes I truly want that!!
Appreciate how fast you upload!! We love following your life
I am a partial wheelchair user. I had paralysis on my right side and while it still isn't great I am able to walk around more now with an afo. The dr recent suggest POTS could be some of my problem with my heart. I have had a wheelchair before this suggestion but I have a rigid light weight chair and when I need it it's great. I'd suggest looking at a power assist like Smart Drive. I never wanted one but with my lack of strength at times it really helps. Also the tires. I have flexrims I believe and they have a little rubber grip between the handrim and tires and it really helps with my dexterity issues :)
I love Harlow's name it is so unique!
Harlow's little tongue out at 7:15 is so adorable! At least I'm pretty sure that tiny little bit of pink is he tongue!
My self n my granddaughter have Dysautonomia I my self have a mild case not so my granddaughter glad to hear about ur vloging on this thanks for sharing
I have two custom wheelchairs. One is manual and the other is power. My power one is broken right now which sucks! The best manual chair I have found is the quickie 2.
I love when Judd is involved in the vlogs
Buy a wheelchair..... put a HEMI V8 in it.
Lanx991 GT3 😂😂😂😂 Judd would be the fittest Sheriff!
Disney Gamer She wins a street race on 1320Video 😂
Lanx991 GT3 😂😂😂😂👏
I always give Jaquie's videos a thumbs up before watching it 😂💕
You are so sweet!
I love the pink wheelchair. Super cute and will match Harlow's pink accessories.
I see that double chocolate ice cream and now that's all I can think about
Obviously this isn't even nearly as bad as your condition but wth my arthritis it's awful I can't stand or walk for too long I can stand maybe 5 minutes before my ankles give out and 15 before my knees start to ache it's horrible
That sounds hard, I am sorry for your struggles! I hope you find helpful tools.
If the HCPS code for the custom wheelchair is K0013, the request will most likely have to be sent for review because they usually also ask for some units of K0108 that definitely have to be reviewed. But your complete medical records with the doctor will go a long way in that process. :)
Definitely look into power assist wheels! I have POTs along with Lyme plus a few other diseases that causes horrible chronic pain. I am a full time user right now. Regular wheels are hard to push for us who are weak even if it is an ultra light weight chair. I have Alber Twion wheels that I can't live without. Smart drive is another option that others love. Once I got my custom chair my independence changed drastically. Wheelchairs are awesome tools. I have a Quickie 7R that I love along with the power wheels. Please message me if you have any questions.
I have chronic fatigue and fibromyalgia and I use a wheelchair occasionally if there will be lots of walking it's helpful
And oh my goodness, I would so geek out on getting new tech! Get a glow in the dark paint job, maybe something like they do with Pandora Land and black lights!
You're so awesome❤️
I have had a custom wheel chair sense I was in 8th grade. That is when I started showing symptoms of pots but of course no one knew what what is was.I was thankful to have that wheelchair while finishing my degree I couldn't have finished it without it. ps. It's hot pink!
OMG I would love pink, if possible!
A wheelchair sound like a really good idea
physical therapy and mobility aids have helped my crashing so much! it still happens (esp after grocery shopping) but i've learned how to control and build stamina to the best of my ability x
Jaq!!! I love your videos!!! You have been such an inspiration to me! I just want to let you know how much these blogs mean to me!! Hang in there! Sending love ❤️❤️
Hey Jaquie, I have orthostatic hypotension. I use compression stockings and they really help keep the blood where it needs to go (not extra in my legs). I helps prolong my standing and especially walking time without passing out and with those symptoms that go along with it. I have commented this before, but with how things are going i wanted to make sure you saw this. Just thought it might help along with the wheelchair, and even on the better days. Good luck and prayers!
Unfortunately they do not work well for me
I'm sorry that's not an option for you. I hope you find one that does work!
I'm having a minor surgery today, and I'm really nervous. Anastasia sets off my digestive symptoms in a very painful, debilitating way and it makes my POTS flare. My allergist thinks this is mast cell related, so I'm loading up on antihistamines this time. Hopefully it works. I'm savings today's vlog for something to watch when I get home from the hospital. Thanks for being there for all of us when we're down and out. Even though it's just a UA-cam video, it makes me feel like I'm spending time with a friend who understands my chronic illness struggle.
*reads title* YES. I HAVE ONE TOO AND ITS FREAKING AMAZING AND BEAUTIFUL AND COMFY AND I MADE IT SO IM SUPER PROUD AND NOT ASHAMED TO USE IT ANYMORE
Also- congrats on 222 videos
As in I designed its look sort of. Its blue with silver *highlights* if u will. Its just annoying to have ro maintain so often 🙄
Glad you got the x-rays. I've seen an annoying comment on here several times about her walking and I knew you were a considerate dog carer and this just proves it lol
Lol! She walks with sass :P
You guys are AWESOME! Just love you guys😝💗
Hopefully you can get a custom-made set of wheels - I have my "Küschall K4" (a swiss company) for a couple of months now and it has been THE ABSOLUTE game changer concerning my mobility and pain relief. It's a light weight, wonderful tool for my MS. Better have one sooner than later. My quality of life changed drastically for the better. Feel free to ask anything you want to know, ok?
Happy almost-Friday, everyone! Remember, no matter what happened, we all survived the week!
As a potsie I use a wheelchair when ever I go outside (especially for doctors). It is very hard to go over door ways and up hills but it's worth it.
Hi Jaquie! Do you use compression wear for your POTS sypmtoms? I'm curious because I was told to wear them, but I find that they make my circulation worse.
I love your headband!!!!
Hey I keep seeing those Oreo cereal that you get so I decided to try them for myself and there AMAZING 🤤
Love your channel I'm subscribed and my notifications are turned on. Hope your chronic illness gets better😀
My bffs last name is Potts and every time you mention your chronic illness I get confused 😂😂😂
Hey ! I had a question. When did you decide to go to a geneticist for different diagnoses? Thank you!
Also I have decided to use a wheelchair until I can get a diagnosis on why I am sooo lightheaded while walking thanks to u for giving me the confidence!
I do not really remember, just whenever I felt I needed more answers I guess!
Hallie Osborne This is happening to me! I don't know what is happening though
Harlow eats very well. I would get the custom wheelchair. Another tool in your arsenal.
Way to go Harlow!!
I have back issues where fluid builds up in my spine and it makes me struggle to walk. Wheelchair has saved my life. its not a last resort its a tool like you said!
Har was so dejected looking when Jaquie left with out her!
She definitely loves to work!
Chronically Jaquie OMG!!! YOU RESPONDING JUST MADE MY DAY!
That's so sweet!
Puffyton 6
Hi jaquie as a full time wheelchair user I'm really happy for you and I'm on tri care and I'm pretty sure they would cover it it also should help with people doubting the need for the chair because it is costume made people know you need a doctor to proscribed it before when I was younger and didn't have a costume one people were like oh she to young and faking so I think it will really help you also you'll need a wheelchair clip for Harlow bold lead designs makes a good one or you can do what me and Luca (my service dog) do and use a big hiking clip ps. Thanks for posting the fridge training video Luca and I learned it from that and now Luca is 2 as of June 4 and completely done with training though we find new things to work on every day
I use the electric carts at walmart. EVERY TIME! I used to try and not and use either my walker or just sit on the floor 😀 (locally all the stores don't even look twice at me on the floor anymore hehe). Every single time I'd get to the car after shopping I'd throw up. Once using the chair that stopped (mostly).
In the winter I have the same issue because we have so many Snow birds. We more then double in population. Sometimes I just sit and wait until one is ready.
Just wanted to let you know that my family and I are moving back to the Tampa Area :)
Good luck with the wheelchair. My insurance told me I had to have 5 documented falls prior to authorization. The Muscular dystrophy association set me up with one that my husband pushes me. I hope everything goes well!
Every time I get up & do anything, I have a near syncope spell. I also sit when that happens. I've passed out once from a hypoglycemia episodes, I'm considering a walker like the new one you have. I don't think I'm ready for a wheelchair
I love my walker! I take advantage of anything that can help me in my battles. Hang in there! I know pre-syncope stinks.
Chronically Jaquie I have an appointment with my primary doc for the purpose of ordering it for me. It's warranted & my insurance covers it; but apparently need a face-to-face visit just for this to satisfy insurance. Thanks Jacquie
Lol! That was like my wheelchair appt. My doc was all for it, but formalities. I was able to get some questions answered though :)
Jaquie you look beautiful with your headband. :)
Thank you :D
Late notification :( but is the earliest i have ever been to see a video 4 u! Keep up!
I realize this I am older video, but I'm just not watching it. After hearing you describe pots, I realized my doctor thought I might have it as well. I didn't realize what it was fully until you explained it and showed the effects. I have suffered from undiagnosed vertigo the last two years. One of my last doctors visits showed evidence of possible pots. They tried to send me to a cardiologist, but I never made the appointment because I thought they were wrong. But, given that for the past few months it has been increasingly harder to stand and walk for long distances at certain times, my legs feel like jelly and I feel a pulling as if I need to sit down. My vertigo doesn't help, and I need to steady myself when walking or standing. Ugh, the reality is hitting me. Maybe I will go make that appointment...
Love Harlow!
I have a Quickie ultra light weight chair and I love it! I also use the SmartDrive MX2+ which I think would be a great option for you! Don't hesitate to reach out if you have any questions!
*May be helpful for Jaquie* I'm in literally EXACTLY the same position with my PoTS and I've been using crappy, heavy rental wheelchairs for about 3 months which is killing my joints. I've been scared to buy a custom one as I wasn't diagnosed with anything yet and I thought maybe they'd make me better. But my pain and fainting made (crappy) mobility devices necessary. But I've now been diagnosed with EDS and PoTS so we're going ahead and ordering a custom one and I'm SO looking forward to having it. I thought I should mention it because we have very similar issues and reasons for needing the chair. So I wanted to suggest you look into Ki Mobility Rogue wheelchair as it's the one I've found is best for my needs. I need the lightest possible chair, with special hand rims to minimize joint pain in wrists and fingers, and this is the best option out there (I've been researching my butt off). It's ALL completely custom and has great reviews. I would definitely recommend looking into it :) Loads of love and spoons! 💜
Thank you for the info! :D
Another tool for another normal unique people!
I've got an electric wheelchair because of my EDS, my hips dislocate as soon as i stand up, I've tried physical therapy, it didn't work for me, hope you figure out what's best for you.
What about a portable mobility scooter for your bad days? I use a transport chair for my 9 year old son with autism when we go on big outings. Whatever makes it easier to live your life!
Starting with a manual and we will see if I need extra help from there :)
Hi Jaquie! I have a question if you don't mind. Does your POTS cause you issues when showering? I have a horrible time with showering. If the shower is too hot, I become faint, my heart starts racing, and when I get out of the shower I can barely walk. I become extremely sweaty and thirsty (FYI I drink 60-90 oz of water daily--I use one of the 30-ounce hospital mugs for water intake and drink 2-3 of them daily, so I don't think I am dehydrated). I have two Autoimmune conditions (Hashimoto's Thyroiditis, with multiple enlarged Parathyroid glands and also Antiphospholipid Syndrome-specifically Lupus Anticoagulant. The Hashimoto's comes with cold intolerance so I am confused as to what could be causing the heat intolerance. Just wondering if you experience these reactions with showering. I am thinking of discussing POTS with my Dr. on Aug. 2. Thank you, I hope you are feeling better today!
I only shower every 3-4 days because of my POTS (and port). I use shower wipes in between. I use a stool in the shower and cold water only.
when you were pointing out the leggings, I kept thinking of Mary from The Frey Life. she loves the cheap leggings from Walmart lol!
I currently am in the process of going to get evaluated by my doctor for a wheelchair and an insurance covered walker. I find that using a cane right now is more for my valance and safety, but it does little to nothing compared to a wheelchair and a walker.
I hope you will get a lot better and doesn't hurt you as much🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏
Can you do a draw my life
It is on the list of to do items
I think with a manual wheelchair if you have upper body issues try and get something powered or power assist as for me it kills my shoulders and wrists/hands to self propel and it also triggers my post exertional malaise as it is like cardiovascular exercise lol