I can't count on my leg
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- čas přidán 28. 08. 2024
- I'm still figuring out pieces of the emotional journey of amputation...its a roller coaster, and I'm not acclimated to this particular theme park just yet!
#amputee
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MY STORY //
Fourteen years of pain and failed ankle surgeries brought me to 2018, when I made the difficult decision to become a twenty-seven-year-old below-the-knee elective amputee. This channel is to document my journey of amputation surgery, recovery, and reclaiming my life.
MY PROSTHETIC LEG:
I use the Ossur ProFlex XC Torsion foot/ankle with a direct socket with passive vaccum suction.
MY AMPUTATION STORY - IN VIDEO:
Why Did I Lose My Leg? • HOW I BECAME AN AMPUTE...
How I Said Goodbye To My Leg: • COME WITH ME ON A GOOD...
Seeing My Amputated Leg for the First Time: • Seeing my amputated le...
Day in the Life of an Amputee: • A Day in the Life of a...
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![The day I lost my leg she ghosted me: the close friend who left me after my amputation [CC]](http://i.ytimg.com/vi/EhRA-B8LhSI/mqdefault.jpg)
As a therapist I so commonly see this same feeling, people making leaps and bounds in progress and then out of nowhere get randomly hit with a bad day and can barely do half of the things from the day before. It's frustrating and hard but tomorrow is another day!
Welcome to #amputeeproblem NO 1! I can’t wear my leg at the moment because my limb centre is closed due to lockdown and my leg needs repairing. So I have to wait until our limb centre reopens, been without my leg for 10 wks 🙄🦿Top tip Becareful in the sun if you have a black socket as you can end up with burn blisters with the sun heating up the socket, which can also make the socket crack. So just make sure to check your leg over if you’re sitting out in the sun. 🦿🤗
I always watch to the very end to hear "The more you love, the more you live".
Me too, Jo has the best outro song. Love it!
Daily affirmation ☺️♥️
The outro song is great, one of the only outros I actually looked up the full song for
me too!
Jo, look at the other socket if there might be an O-ring or something stuck in that that you need for the other socket. Just a thought.
Jo, thank you again for making this video! I honestly wish someone had told me about these highs and lows before my amputee journey. Thank you for mentioning in your video that what we see in social or news media is usually the high point of someone's journey but to get there they have had to struggle with ups and downs like all of our amputee peers have. And I'm discovering, the first year sucks the most! But (literally and figuratively) with every step, we get closer to converging on the solution that will have us realize our individual goals. Management of the emotional ride is just as important as overcoming the physical obstacles! I'm sorry you had to go through this setback from the other day but big thank you for sharing this with the community. Understanding just how much everyone else experiences and how they deal with these setbacks has helped me immensely! Best of luck to you and all of our community! -Avelino
Jo! I found your account a few days ago and I can already fee how changed my life is. I broke both of my ankles in a climbing accident a year and a half ago. I have 7 plates and over 2 dozen screws in my right ankle and 5 screws in my left. I have felt nothing but pain for the last 1.5 years. I am extremely active and find my peace being outdoors. I have never been given the option of amputation. I literally started sobbing the other night watching your videos. My future for my right ankle is hopefully good. I’m hoping after hardware removal I will have relief. But my left ankle (tailis) is deteriorating from joint fluid and needs significant work. I’m looking at ankle fusion or ankle replacements for the rest of my life. I’m 25. I can’t afford these surgeries. I’m going to get my hardware taken out and hopefully my mindset will be different. But I have literally been in a different state of mind thinking I don’t have to live the rest of my life in pain. Thank you for sharing your story.
I'm an amputee and you give me lots of advice and encouragment. You are so articulate and what a sunny disposition. Thanks.
Chop chop gang represent. We gotta stick together.
I’ve been through this. I call it “the universe humbling me” because no matter how good something is, there’s always gonna be bad and I have to learn to walk along side it instead of wishing it will go away
I just want to thank you for showing me the other side of being an amputee. I couldn't imagine being an am puttee, but the fact that you show the emotional and physical trials just makes me understand what being an amputee is about. I have a lot of mental issues, and I understand going from 100 to 0 within a day or within a couple minutes. What helps me is when that switch happens, I go and take a deep breath and remind myself that this is only temporary. You will understand what's wrong with your prosthetic soon enough and will be back to 100. The important thing is that you're not at 0 all the time. It's kind of good to have these ups and downs, because when you are at the top you can actually enjoy it. You are such an inspiration. You keep doing you. I believe in you!
I am also a below the knee amputee, in fact had my surgery 9 days after Jo had her second one. It definitely has its challenges that is for sure. Good and bad days. I try to make jokes as much as I can cause although it has not been easy its just another thing to deal with. A sense of humor helps a lot
4:10 The dog is like, "I want more than anything to help you, but I'm a dog."
It must be really frustrating for them because they know there is a problem, but they have no understanding of what the problem is, let alone how to help solve it.
Just look at the dog's face!
I too have been having prosthetic fit issues pretty much since the beginning. I received my first leg/knee this past halloween and today I was cast for my fourth socket. Yes, fourth. For those of you who read this, who aren't amputees, like Jo says in her video, an ill fitting socket can lead to all sorts of problems......like pain in my case.
i can't relate to the physicality aspect of it, but i definitely relate to the emotional whiplash effect i get while recovering from an eating disorder. highs and lows come by so fricking fast it's sometimes so hard to keep up. but progress isn't linear! wishing you the best
hope u feel better soon ❤️ sending love 💕
Old vid, I know, but this is so much a must see for people like me who work in the industry. We need to know the trials and tribulations of people who wear the things we make. We need to know what's wrong, what's not working and most importantly, we need to listen and understand. I've worked with prosthetics for 10 years. I still don't have a clue what's it's like to wear a prosthesis, since I have all my limbs... for now. Talk to your prosthetist or orthotist and get them to understand what you need. That's why we do what we do.
I met some neat people when I was in high school that were very different from me and I remember that's when I realized that I started looking at people differently in a positive way. I truly started realizing that when I see someone who has a handicap spot that they have had some potentially huge struggles and some have lived with it all their life and it wasn't necessarily as much of a struggle when they knew no other way of living life. My mom ended up with a broken ankle about 7 years ago and she has a handicap placard and that has only intensified my thought process when I see someone with one. It makes me think about all the reasons that someone could have one and makes me remember how many "unseen" disabilities there are and it always keeps my thought process in the phase of what struggle could they be going through instead of questioning why they "take up a space that someone visibly struggling needs" or any other thoughts that many people have. I always think about what kinds of things happen to people all around me that I don't understand and have never thought about or known about before. I teach my kids the same way I seem to have been raised to think about the struggles that people have that I have never known and not just assume anything about anyone.
Sling shot - perfect description for what I've had happen with my energy level having MS. I'll have a day where things are just flowing, falling into place, I finish something and have energy to go onto the next thing, I'm getting stuff done left and right but run out of day to get other stuff done. I go to bed thinking I'll work on the such and such the following day and then the next morning I awake lethargic and unable to get hardly anything done. It's such a downer.
Don't even get me started with handicapped parking - it's an issue because I look so "normal".
Virginia
Clearbrook MN
I can completely understand this I'm autistic, most days I can function 'normally' but there are those days where I can not do as well as I'd like
Not exactly the same, but I had a hip replaced a few years ago and while I'm extremely grateful for all of the things I can do, I still have days that hurt, or muscles that cramp, or general uselessness of that leg. I feel you, Jo. Keep pushing. You're a huge inspiration and you have a cute remaining foot. :)
Hey Jo
Not an amputee but thank you for your channel
I’ve been dealing with chronic IBD for the past few years, the highs of remission and the lows of a flare. Some days I’m back to my old self for weeks and then there are days I can’t be out comfortably because I have so much abdominal discomfort so listening to your channel is really reassuring that others have the same struggles just in different ways.
Feel this. Not an amputee, but have cerabel palsely. Some days I hardly feel it, some days even getting out of bed hurts. Or I'll be doing some house work, feel fine the suddenly my leg will go, or a muscle spasms and it just stops everything. That emotional swing and dealing with that fustration is something I'm still working on. 🤷
Thank you for sharing 💜
I can relate to this and I’m not an amputee, I suffer from anxiety and some days are ok, I have no problems, I feel I’m improving, but then comes a day where my anxiety comes back and I feel that I’ll never beat this, that my effort was a waste of time. It was really refreshing to see your video, thanks for sharing.
Mad is normal. As a lower limb amputee this sort of thing is absolutely spot on. Have to get limb repaired or replaced one or more times a year for last 5 years Feels good at first but end up wearing it out. Get frustrated then fix it and cycle repeats. Am on 7th socket and 3rd foot. Please take solice in that you are pushing technology forward. Having prosthetic is like having an old car. Always having to do maintenance and needing to take it into the shop. Keep up good work!
Haven really nailed it in that piece she wrote; she is such an amazing, young woman!
Don't know which valve you're using (guessing the one paired with the DSS), but sometimes it helps to tape the lower edge of the sleeve to the socket to get everything sealed up properly. It solves the problem a lot of the times with some valves, but not all. Or there's dust or something in the valve that messes with it. That's what I can come up with anyway without having the socket in front of me.
As a CPT your videos are super interesting and inspiring, so keep up the good work and keep being you.
I am not an amputee, but I have a neurological condition that can cause lots of issues and I relate. After avoiding my worst symptoms (muscle weakness that can escalate to paralysis) for a couple months I got excited that things were getting better, when one day I went roller skating (wow, who knew I could be active again!) and I got that weird feeling in my legs again... I straight up had a panic attack and it ruined my day, and I had heightened anxiety for a while.
But, I have since realized that recovery is a journey and the path goes up and down. Just because there is a road block today doesn’t mean you are back at square one, doesn’t mean you have to start over. Today, a few weeks after that day when the weird feeling came back, I got clumsier as I skated, my muscles stopped responding the way they ideally should, and I had to take longer breaks than usual and stop early to avoid injury. But it was still a nice day. I’m glad I got to skate for the time I did. The weather was nice. I got some sun. And I didn’t panic. It’s ok to experience bumps in the road every now and again, we have dealt with it before and we can handle it again. Things will change, that is the only thing we can count on, and it will be ok.
Gotta celebrate those steps forward, even the smallest ones, when we can. It can be easy to forget that. Yesterday was my first day of being able to get into my wheelchair and move around the house. I was so excited that I just wheeled laps around the kitchen for an hour.
As a wheelchair user myself I say: Let's hear it for the wheelchair! Let's celebrate the wheelchair!
I’ve very much had this experience, but with my mental health. I can spend a week or two feeling great and productive, and in an instant everything changes and I’m reminded that I have a chemical imbalance that will never regulate itself. It’s so frustrating because you can see it happening and still have no control over it.
I’m sorry you have to deal with this, Jo. Thank you for sharing both the ups and the downs of your journey ❤️
Thanks again Jo, for another excellent video. It drives me crazy when I get the air leaks. I still have trouble wearing my leg for more than four hours at a time.
Great shirt! I've just entered this 'topsy turvy' world as btk amputee of 4 mos. The excitement of walking is unparalleled. The low point of a bad day / days is beyond low - it robs ur soul.
This video is one EVERY amputee needs to see because, Jo, u tell it like it is.
Question Everything, it is not just an amputee or any other type of disabled person that needs to see this. I am an able bodied almost 64 year old and I get something out of every one of Jo’s videos. This one today especially is motivating. Btw, I first started watching Jo while I was volunteering in the Resource Centre at the Rehabilitation Centre attached to one of the campuses of the major hospital in my city. I am now with the ICU Family Lounge as they closed the resource centre for renovations and to change locations. Unfortunately, with the changes they are going to move more to computer access and less hands on, which I think is a mistake. Our Rehab Centre’s clients include amputees, para and quadriplegics, stroke patients, chronic pain management. I think I got most of the clients, but, I may have missed one or two. Info the resource centre could provide included things like: where to go for financial assistance; legal assistance; transportation; home adaptation (dated and basic, but, an engineer who was a client said to me, “while no bells and whistles that for most would just drive up the cost, what it does have is great because it still works for today.” He was in a wheelchair.); recreation and education. We also had biographies and inspirationals, disability specific books, parenting and sex with a disability. I also had a personal reason for watching, my mum was a right leg b/k amputee who never accepted her amputation. I tried to help by telling her that she wasn’t her amputation, nor was it her. I suggested that we name her artificial leg “Lucy” as it looked like the socket was made of lucite. That didn’t seem to help.
Do you think all the exercise and activity is building muscle in your leg and it fits differently because your leg is different.
i get it. i dont have joint/mobility issues now, but i used to. For me, the so high to so low i can relate the most when it comes to my adhd. I finally got diagnosed at age 33 and right out the gate found something that worked and i could finish in one night what would take me a month like taking out the trash, opening my mail before i would get a late fee, doing laundry and the dishes. I was still having issues focusing enough to get a job so i tried to up my dose to an actual doctor recommended dose for an adult, but the side effects were just too much. i just couldnt sit through the application process nor gather the information together to do it on the lower dose. i sadly had to go back down to a lower dose and regroup a new game plan. a year ago, i started looking for work from home and pushed myself to get my indeed profile back in order since i can apply in many places with minimal prime focus time. i am now proud to say i have been working full time for the first time in 2 years over the past 5 months. i dont make alot at the moment, but sometimes adaptation brings clarity. I dont think i have ever been as successful working in an office as i have been from home. I dont have to worry about being "normal" to my coworkers and can just be more focused on the task at hand. I know many people would be more distracted at home, but for me its the opposite. I try to do the most important things i ways that use minimal concentration, like use ridiculously large trash bags for the can its in so its not the end of the world if i forget 5 times, have multiple alarms for my breaks etc. i am trying to learn more tech skills so hopefully i can move into higher paying remote work. I'm glad to feel employable and not just be treated like a burden because I just can't function the way "i'm supposed to" since its hard to see why my brain has a hard time going from a to b while i have 10 other things going on all around me. working at home helps me focus on the most important part of my job; staying employed. Lean into what makes you different since it can give you clarity on a path forward.
Thank you so much Jo. I needed to hear this message today. It's been one of those days for sure. We have a very similar personality and drive. I can so relate. I can't even count how many times your encouragement and honesty and frankness mixed with a whole bunch of compassion and empathy have lifted me and I'm sure a lot of others as well. What a blessing to have found you. ❤️
I can completely relate. My leg had been doing well but then got a blister from my liner due to the fact that it is 109° and I was sweating. So no leg for a couple of days but my walking has been good. I cannot go out for walks outside due to the heat but I love wearing my leg and its frustrating when I cannot. Our lives are so different now but I am not at all unhappy that I am an amputee. We just gotta push through and know this is our new normal, some assembly required and all...💜💜💜
How about early morning walk, or it's just as hot then?
darkiee69 that’s the best way to do it, waiting until the temperature cools down a bit in the evening or first thing in the morning is the best way when going for a walk. Also watch out if you have a black socket in the sun you can get burn blisters from the sun cooking the socket (it can crack the socket as well) 🙄🦿
Raven, I wonder if you are in Arizona. We had heat of 109ﾟ in Phoenix area yesterday.
I'm a new amputee of 4 months. At physical therapy this week the therapist moved my chair while I was going to sit, and I fell right on bottom of my stump. Ouch, anyone??
I've had severe neuropathy before / after my amputation, so just wearing prosthetic hour and a half a day. Some days I can't. Like now, being sore from my fall. This is a slow process for so many of us. Will wear leg more as neuropathy subsides. On Lyrica. which helps. Had 6 pain shots, which did very little. Still happy I did the btk amputation, no regrets here.
@@cristers2332 yes I am in Phoenix actually. I am ok on the pain but not being able to wear my leg when its swollen makes me mad. I have had this leg since March 6 and am still only on between 0-3ply. Not that I am really complaining considering I was in a 15ply 10 days after getting my first one but still...who is your leg guy?
@@cristers2332 and who did your surgery? I was going to PT through Spooner but am high risk for this virus so I quit going. Can pretty much walk good except inclines absolutely kill me!!
Yes, I can relate. I have dyslexia and basically didn’t learn how to read until I was in 3rd grade. The school district put me a grade behind and when I was 1/2 through 8th grade I decided to homeschooled and start 9th grade. There was some days I Feld I could prove my bullies wrong, other day I felt I was never going to be able to do this.
I’m not an amputee, but I have several chronic issues, and can completely relate! My body fails me more days than decides to function, and the frustration is real! One step forward, two steps back. It definitely helps hearing I’m not alone in this crazy struggle called life. Love your videos!
Hi Jo, I’m three and a half years an amputee and know exactly what you are talking about with the roller coaster. Some days my leg feels great ,and the next day I have trouble getting it on and have discomfort for the entire day. Thank you for your videos 😊
You can describe this so eloquently with regards your physical health... so why do people find it so hard to understand this happens with mental health?!?! This can happen to me with my anxiety and depression! One minute I feel capable and on top of the world, the next minute completely hopeless, like I can’t manage anything and everyone should give up on me etc etc...! Thank you Jo, your videos offer great insights 💜
Hey Jo! I’m so proud of you! When you began expressing feelings towards this “slingshot” of emotions it resonated with me on a personally level. I relate to that feeling on a daily basis, and I just want to say thank you for letting me join you on this journey. I appreciate you sharing so much of yourself with us. It really helps me grow and change my ways of thinking on so many things! You are a beautiful soul.
Girl! I feel you, I have Spina Bifida and use a walker. I have had times when i'm leaving my house for a weekend, than BAM something happens to my walker, no problem, I call someone to come repair it.. they tell me they can come in a few hours. So here I am waiting and putting my plans on hold or changing them all together
I'm a blk amputee as well on the right leg. It's been 4 yrs so far and what you explained about the prosthetic not working to it's full potential is almost a daily struggle for me. I'm also hoping to have my left leg amputated this summer. Recently subscribed as well.
Thank you for posting, my boyfriend and I have been going through a lot, and your videos seem to help calm me down and keep going through the hard times. So thank you
i like how this felt like such a random moment of an everyday life that you just decided to share with the world to show how different it is when it comes to your day to day say from a person with two working legs. your smile brings such comfort knowing that you went through so much yet are able to -smile, and take on much more. such a delight to hear your voice jo, keep at it girl
Chronic illness that for the most part, rarely affects me any more. I feel like I get my life back together and I get to be a normal person again and then I one month later I end up in the emergency room due to pain and being unable to sleep due to said pain. Always just a ain't slap in the face that I will never be normal and that my body controls me.
My cousin Lauren had her arm amputated as a baby because the arm from her elbow down was serverly deformed and she does everything from sports to writing to cooking food and driving. She said it’s hard getting things on with buttons and tying her shoes but she said age doesn’t even remember what it’s like having two hands/arms but she deals with the sand thing. Some days she parks in a handicapped spot because carrying 15 bags of groceries is hard for her or if she’s getting a big box. People all the time tell her she has no right then she screams IM MISSING MY ARM WHST WOULD YOU LIKE ME TO DO. Then people usually leave her alone
Much like you, I am a lower limb amputee. However, I also have a brace on the leg that I still have. So, perhaps it's obvious as to why I am in need of a handicapped sticker. But I still do not understand why people feel the need to comment. How can one account for situations such as people with bad hearts or other health issues that cause difficulties with walking. People need to step back and step out. They can not know every reason for why someone would need a handicapped sticker, and they have no right in judging anyone anyway. Not really. And may I just say, I think you are a very brave soul for putting yourself out there as you do. Good for you!
Hey jo!! I’ve been watching your videos for a little over a year and following you’re journey. I just wanted to let you know that I love your videos and you are so inspiring. It’s not only your story but I think you have a great personality and you have such a positive energy. I wish you the best and will continue to keep supporting you and following your journey!!🤍
Thank you so much for your inspiring videos and great info. I've been dealing with surgeries and pain for over 4 years now and considering trans tib amputation due to continued ongoing issues. Haven't pulled the trigger yet as im going through all the mental steps.
I’m not an amputee. But I am VERY physically disabled . I have HEDS if you feel like looking into to it, I’m on the more severe side of the spectrum. I use mobility aids a lot. When I get moments of feeling “normal” I have to quickly remind myself that if I make one wrong move I could dislocate any joint. Any way, I loved this video because it’s shows the mental impacts of identifying as disabled. ❤️
Part of your mega down is because it was going so well, if youd had a week of sore days finding a day where your prosthetic wasnt in the mood would have been just another day
If I have learned anything from watching you over the past few years Jo it's that no matter what life is throwing at you just keep going! As an Australian Pharmacist I watch channels like yours to get a better appreciation for what my patients are going through so thank you for sharing your story.
I don’t have a prosthetic, but I do have a bad leg & foot on top of other chronic health issues. I can totally relate though! I can be having a great day, I’m able to do things then suddenly my body says “Nope! I’m done!” It’s frustrating, but it’s all part of having health issues. I have learned to pace myself & try not to over do it. I’m glad you got it figured out!!
Not an amputee, but I do have at this point several discs and vertebra in my lumbar that are each year getting worse and worse. They ( several vertebra) are already worn out because of my age I'm not a good candidate for fusing the spine to ease the pain. It affects how I walk, and the things I want to do, I have to go around what my spine wants and can do. At this point I just like about it what else can I do about it. I do own a corset it helps when I want to bake ( for special occasions) but is a pain in the ass to get into by myself. So I don't bother most of the time. I affects how long I can sepend time with my friends. The walking mostly. I just have to give up and go take a nap. I also have to very careful what I sleep on as that can lock up vertebra. This has happened several times, only got help the third time because I could go to physical therapy to reset my pelvis, whatever they did it worked. The first two time I got basically told to suck it. 🙂 I use video games as an escape while j wait for the pain meds to kick in on bad days. I do see a pain doctor at this point to help with well pain. So I don't have to use as much pain meds. Well that's my boo-hoo. 🙂 I'm not trying to be rude, but at this juncture I'm just very cynical. I'm might come across as rude, sorry if I did. Have a awsome evening y'all.
i dunno what magic youtube has used but i was recommended this video on a day where i was crippled with pain. i have fibromyalgia and half of my lower right leg is paralyzed due to an accident and it decided to just stop my whole lower leg from working for the day.
some how your video showed up and i just cried as you hit on every single feeling i was struggling with and couldnt put into words toward my friends who were worried and wanted me to go lay down all day but i felt like that would be me admitting defeat.
i know its an older video, but thank you. i was able to rationalize a lot for myself due to your words. so once again ty for sharing.
I haven't had an amputation, but I do deal with chronic pain (from numerous joint replacements - that still hurt, just not as badly and arthritis all over my bod). My pain isn't horrific by any stretch - but it definitely holds me back and I'm tired a lot of the time. I can understand completely how this (not being able to count on your leg) would be so frustrating and cause anxiety and anger - your feelings about it aren't irrational at all - especially considering how you've been through TWO major amputation surgeries and had complications on top of that! That's rough. We're here for you. 💞
I appreciate your honesty. I think there are so many things in life that happens with just to have someone state it so honestly.
I’m not an amputee, but I feel this IN MY SOUL. This is life with chronic illness and disability. I have Cerebral Palsy. If my power wheelchair doesn’t work, I can’t get out of bed. On bad pain days, I stay in pajamas and severely limit my activity. It does get better as you learn to manage symptoms and care for equipment.
I have definitely felt this emotional rollercoaster with chiari and all its symptoms. It's a surprise each day what my body will or won't be capable of, some days cause me emotional whiplash as I will have a great day with decent energy, low pain, able to talk and walk and think, and then the next day I will be in so much pain and fighting to balance. I am coming to terms with the disability of my conditions. I had purchased a shower chair for after surgery but had to start using it this past week. I am ordering a blood pressure monitor because a couple weeks ago I was couch bound almost all day due to severe fatigue and dizziness. If I could just know how each day was going to go when I woke up I could come to terms with it all better.
Thank you Jo, as usual you nailed it! You impress and inspire me with every post!!
Getting older and living alone I come across things I used to do and now have issues with. My mood can drop, my temper flares, maybe not as bad and I certainly haven’t been through the trauma you have, but wow I can over react like a pro! I know falling from that lovely high to despair can be devastating but you know that those good days will happen. Don’t be so hard on yourself. A lot of it is fear that that bad day will last, it won’t. You have done so good.
I totally relate. I have PTSD after being in an abusive relationship and I have moments when I an capable of holding my partner's hand and being so proud of how far I've grown; then to be triggered and then physically incapable of have a person near me since it feels like my skin is on fire.
Hi, Jo! Here is something I don't understand: why can't we as amputees not be able to have a spare socket (paid for by our very expensive medical insurances)? Instead, there is this constant nickle and dime game where an amputee has to wait 3 years before the insurance company will pay for another one. We should be able to have redundancy in our equipment, after all, they are mechanical devices that will fail at the least expected moment
I LOVE YOU JO!!! Ahem, also i understand as for pain management because it's like ... "I DID SO WELL YESTERDAY!".. etc" and then the opposite happens... i just get it. and i am not amputated, i just relate as something else in my life. I am also grateful for fusing my ankle when i did because i am doing so much better. but I LOVE YOU and I LOVE THIS video..
I go through the same exact cycle of emotions when my preferred wheelchair suddenly isn't able to perform like it usually will. It's a full reset of how I navigate Earth and I am quite vulnerable to getting impatient about it for all the same reasons you mention. It's frustrating for damn sure! I'm super grateful that I have this amazing wheelchair and it gives me the freedom to not be housebound like life used to be. But crappola DME is always a double-edged sword!! It also doesn't help that I'm STILL a Type-A Goal-oriented get it done NOW dude... I have to slow that guy down so he doesn't wear me out far too soon!
I’m so lucky to have the wheelchair I have. The VA takes very good care of us when we need prosthetics. I hope that your wheelchair will continue to perform like you need and want it to.
What kind of chair do you use? I've got one I bought on Amazon and customized a bit (replaced the left footrest with a platform to elevate my stump), but sometimes I'm concerned that it's not up to the constant use I put it through.
Papa Jefe I’ve got a tilite brand. It’s very comfy.
Papa Jefe I really hope you will find one that will be perfect for you. Like it being fitted and all that.
@@Jaggededge112 this Drive chair I've got is actually pretty great, except it makes a lot of noise and the handwheel has a lot of rough spots that tear up the skin on my fingers a little.
Do you powder your stump before you put the liner on in the morning to absorb sweat?
I am not an amputee however I can very much relate to what you're going through. I use a wheelchair to do everything, and most of the time I don't feel limited by it but as soon as something goes wrong with it I feel horrendous and like I am not capable of anything including getting out of bed. It's amazing how something that makes us feel so free can also cause us to feel incredibly trapped.
Jo, how long did it take for you to start feeling good?
Meaning not having pain anymore also adjusting
to your prosthetics leg without having pain?
i feel this a lot with mental heath and/or my adhd, especially when i have a few really good days in a row, but then i suddenly can't get my work done or i feel to anxious to confront people and communicate what i need to. it gets super hard and frustrating, but i just have to remember that ive been here before and ive grown and learned skills to make my life easier even with these moments.
My husband was born with a heart condition and ended up with a pacemaker at the ripe old age of 2. Most of the time he is completely fine. We were normal, he was normal. About 2 years ago the doctors decided he needed a revamp of...everything equipment-wise. It tore away this veneer of "normal" very quickly. We sat on the couch the night before a 7 hour surgery and 3 weeks later waiting for a second surgery because the first had gone awry and he had to grapple with the reality of his condition and its effect on our lives. His rollercoaster is a lot slower than yours Jo, but the emotions ring so true.
Jo, I think we all have stories like yours at one time or another. As a bilateral BKA I’ve certainly had my share over the years. Once I could not get suction on my left leg. I took it off and on several times when my 2 year old granddaughter came up to me and asked me if I knew what this is as she opened her little hand and in her hand was the exhaust valve that had fallen off my socket. Well, as you know, there was no way to get suction with that missing. Sometimes it’s the obvious things that you really don’t notice. I know you know this but you really need to have a personal relationship with your prosthetist. In addition to the amputations I also have Myasthenia Gravis and consequently have really poor upper body strength and have to depend on my prosthetist for something as simple as changing out a suspension sleeve.
I feel that - had complicated arm surgery and had to learn to use my hand again. And the first time making food for myself again I threw a pizza on the floor and was full of that rage (and sadness).
I am the 68 yo woman whose had an above knee prosthesis since 11.
Yes, there are highs and lows. However, prosthetics are going to fail just as real body parts have problems.
You really have to be positive consider problems as challenges to be solved.
It DOES get easier.
We have to be patient with our prosthses as well as ourselves.
What socket/suspension are you using? Are you using dynamic vaccuum? Elevated vaccuum? I see you've mentioned direct socket but in my region no one uses that term so I have no clue what this means, ughhhhhh. Help me understand your set up girlie!
I’m having a bad leg day myself it doesn’t fit rite and hurts I feel better watching your video thank you So much 😊
I can relate even though I am not an amputee, I have other issues with my legs. If I make a plan to do something like cleaning the house on a certain day, and instead I wake up at 4 am in tears from pain. I get upset with myself because I can't do what I had planned. Oh and I can't stand when people say something about parking in handicapped spaces. I had a man in the car behind me and flipped me off and everything. I am pretty sure he felt bad when I took the walker out of the back seat. I had the placard where it was supposed to be.
Ask about doing a pin upper leg system if the pump system isn't working out, I have to use a pin system, I'm so active and I mess up my upper carbon fiber piece on my left leg and am using a pin system with a WillowWood Alpha Smart Temp liner, actually I have four of them, two for my swim leg and two for my walking and running prosthetic and it stays on pretty much unless I sweat a lot, some times it slips loose. My prosthetic professional WifWick limb socks to pull off sweat but made my leg bleed at the surgical line where the scar formed doing so much. Now I got orders to change the WifWick socks on the stump switching them out three times a day. I have been dealing with extreme anger issues when i can not live with the leg correctly and more, due to organ transplant stuff, and know that aspect as well in depth and not very friendly with humans at all that mess with me lately, so definitely get what your point is for prosthetic leg issues... and thank you for posting this, been very negative lately myself iwth others that anger me tremendously, hammering them pretty hard for messing with me, and not the best thing but how I am at times with my personality. Thanks for posting this video about your issues, making me think it out differently for the anger issues I have a little bit tonight. Have a good weekend to you and your family... and doing simple things at times, like a light I changed out in the bathroom and I dropped and broke it and had climbed on the counter with the prosthetic on, took me twenty minutes to climb down trying to figure out how to get down, at home alone, with out cutting my good leg all to pieces on broken glass, I did it, but that pissed me off major time as well for chaning out a light bulb in my bathroom. Sleepless this evening, and thanks for showing me my anger issues with all this mess isn't just me being off the deep end as I think I am mentally some times for all the anger. Any way, thanks for this tonight and for the weekend. I tis not easy dealing with prosthetics and simple things like the light bulb inmy bathroom that made me angry when I dropped it and broke it and had to figure out how to deal with the mess with out getting hurt missing a limb climbing down on borken glass, and my emotions go ballistic... glad I'm not the only person that has issues with emotion, and for me lately, it is anger. Any way, appreciate your post for loosing a leg, Lost mine and it isn't easy, and I can not stand wheel chairs or walkers and such things. Later and wish you and your family the best and all your followers and friends on CZcams... and not sure if I ever shared with you and your friends, but the lady that died and saved my life loaning me her left kidney and pancreas, at age nineteen as she was in 2011 was a ballet and jazz dancer and this is her in the first video I ever saw of her... slammed me like a tidal wave to watch this video for the best friend of my life that saved my life when she died loaning me her left kidney and pancreas. Her pancreas survivied six and half years, and died and cost my left leg, but her left kidney is still alive in my body... so for her family I try to fight to survive this mess, and it isn't easy or fun at all but I am surviving still and thanks for your videos... my donor was a ballet and jazz dancer from age three to age nineteen... she would be 27 now... and her living left kidney in my body is 27... so loosing my left leg to stay alive, and she, loosing her life for the eight extra years I have, all of it isn't easy to think out, but for her family I have to fight at times to stay focused better... and I first saw this video of my donor in 2014 after her father wanted contact with me and I signed legal documents to have contact... and this hit me like a tidal wave to see her... for the price of my life, I lost it in tears for the lady that never spoke a word to me, but saved my life loaning me two of her organs... czcams.com/video/r6GIOo6gBGM/video.html ... none of these kinds of things are simple, or easy.
Sorry if this has been answered before, how often do sleeves need to be changed for a leg prosthetic?
Jo, do you think knowing what you know now about the difficulties of prosthesis and amputation, that you would have preferred to keep your leg and deal with the ankle pain? Or is it better now even with the added difficulties?
You're right, it's odd. My own mental health journey sounds similar. Good days and bad days, mood swings all over. It's odd but I think also normal 😉♥️
Ugh it same when my powerchair breaks. You get so used to it working and giving you independence & quality of life that when it breaks it is SO annoying...and it hard going back to a time where you didn't have it as you know how much better life is with it!
My main condition is ME. Trying to get stable is so hard and I still definitely have the sling shot moments, often several times a day! Sometimes I'm like "wow am I getting better?" and sometimes minutes later I go downhill and feel like crap and can't do anything. lol
This may have nothing to do with switching back and forth. I had endless problems getting my various suction legs to work. I finally just went to pin lock, which works much better.
Sadly, like the dog, I have no idea how to fix it.
Dealing with that "disabled" feeling though, just keep in mind, it's temporary. You'll get things sorted and be back on your feet soon.
My husband and I are both amputees due to motorcycle vs car accident. We call days like this “the peg leg life”.
the emotional rollercoaster is definitely something I have been dealing with more. I was diagnosed with ibs few years ago now. I have been on medication since then too which is great as when it works, it works great. i feel human, I am able to do things that I want to do like make short films work on gaming videos, make crafts, play ukulele, and any other hobby i have. however like today, I have days where i can do everything right but my body just gives me a giant middle finger and breaks me so much. I will be doubled over in pain waiting for ages for any kind of pain relief to work, if it even does decide to work. even after the pain might subside, I am left drained of energy and feeling so fed up. i can be happy and laughing one minute then 1 flare up later I am sitting in tears and feeling so angry with my body.
do patrons get perks / videos and pics
They do indeed!
I felt the exact same way today. I went on a boat for the first time since getting my leg and man I felt like it was all new again and I was angry for no reason that I wasn’t able to balance the way I feel like I should have been. Thanks for this video Jo!
Totally understandable why you would feel that way, you've got this ❤
I get what you are saying. Recovery is never a straight line. Sometimes it is three steps forward, five steps backwards. Just keep pushing ahead.
You are living a unique life which we can only guess what it is like. Your having to learn as you go but you will get there. With out the lows you would not know what the highs can be like.
❤❤❤ You have talked about the sleeve not sealing before...did you clean it differently?
Hello Jo, every good wish for you. A few months back I watched your recommended video and left you a 'critique' in my colorful way. You were kind in your response and I appreciate you not wasting any 'time' on a strangers commentary, truly.
But Id like to quote, _you dislike in others what you hate in yourself_
And explain that I stated my own 'dislike' in your video because your 'issues' made me look at my own and I literally never identified with a termanology like 'disassociated'. I researched it after my snarky comment to you and realized _exactly_ why...Keep doing what you are doing, you are appreciated and chosen, Peace to you
And when my donor's pancreas failed, on April 7th, 2018 and then because of the vein they removed from my left leg to plug in the two organs she loaned me ended up causing the loss of my left leg, her left kidney survives in my body, but her pancreas died in my body but survived past the expected survival statistics, don't think I ever shared with you guys her memorial web site, so wanted to share a bit more with you Jo and your viewers the site of the lady that gave me life and she is my best friend keeping me alive, and loosing my left leg is nothing compared to what her father and family and twin brother lost in her father's only daughter... it bother's me at times deeply, but also makes me fight for every day in ways I would not, for whom she was as an amazing ballet dancer and performer. Not easy, and I have anger issues, but survive, and this is my organ donor's memorial web site, her family hasn't updated in a while, maybe it isn't so easy for them, at all, for whom she was, but in those of us that survive, and myself personally, she is the best friend of my life and wish it never had to be this way to survive for those that wanted more time from me in this life, miracles are not at all simple things... morgansmiracles.com ... and hope you have a good weekend and all your followers.
my grandma had gotten a knee joint replacement 20 years ago and she often said that she couldn't rely on it too much, that it sometimes would slip away 😬😬
I'm really glad to see at the end that you've gotten things figured out! I've had a number of long-term illnesses and conditions where that roller coaster would cause many problems. I would go through a period of relative calm and 'normalcy' and then I would wake up a feel like I'd been run over by a tank. Most of the time there was no identifiable reason why things would suddenly change. I used to think that my body had someone else living inside who just liked to play tricks on my. Very frustrating! Anyway, I'm so glad that you are back on track! Take care.
I would reccomend the one with the sleeve with the pin. I've never had an issue with it and it's very comfortable. I also recommend a knee walker as a back up. I have balance issues so I can't use crutches or Iwalk and it works great. But I totally understand your frustration.
Its been 9 months since my left leg was amputated and I was walking but never off the crutches but these last 3 weeks I have gone backwards and spend my time in a wheelchair almost all the time. I do have a bad right foot which is fused and has nueropothy so basiclly I feel totally screwed. Yes I am depressed because the bad stuff just dont end so i do get it.
Great video jo
I definitely know the feeling of the ups and downs in the same day. Sometimes I’ll be having a really good day and then I try to do something I used to do without thinking about it, like walking through a tight space. Then my foot will catch on something because with my brace I’m a shoe size bigger and can’t just bend my ankle out of the way. Sometimes it’s easy to shrug off but other times I knock things all over the floor or fall. It takes a bit of being frustrated before getting onto the next thing.
To quote the late legendary Neil Peart of Rush, "one day I feel I'm on top of the world and the next it's falling in on me, I can get back on, I can get back on. One day I feel I'm ahead of the wheel and the next it's rolling over me, I can get back on, I can get back on..."
It’s Norm again how did you deal with life for the last 2 weeks before surgery I think I am tuff but not so much now
I have a pin lock system and so far (knock on wood) it is reliable. I have other issues, like I need to be measured and get a new socket, but my pin lock is great. Good luck!!
And yes emotions are crazy as an amputee. I do the best I can and sometimes I take it out on the people I love and they don't deserve it. Maybe eventually it will get better, but at the 2 1/2 year point it is still bad. RBKA 12-1-2017 from necrotizing fasciitis.
i try to remember that every day is a new day. its okay to feel sad and hopeless today, but remember to start tomorrow with a positive attitude. you can feel the feelings, just try not to get stuck in a rut