Amputation side surgery didn't work (again)
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- Опубліковано 3 лип 2024
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It is officially six months since my last amputation surgery - a triple TMR (Targeted Muscle Reinnervation). How did it go? How's healing? Here's a little update, thank you all for being here!
Original Surgery Video: • This was the worst sur...
Allergic Reaction Video: • The SEVERE allergic re...
#Amputee #Surgery #FootlessJo
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My Amputation 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 has documented my journey adjusting to life with a visible disability as an amputee, and continues to be a haven to discuss physical and mental health!
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Seeing My Amputated Leg for the First Time: • Seeing my amputated le...
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You're 100% allowed to be angry and annoyed and have a pity party. But as your friends said, at least you gave it a shot and now you know. That shows huge bravery and dedication 💪🏻
Did she say her friends said that in the video? I think I spaced out for a bit and must have missed that nugget of info, but I literally just commented the exact same thing to her. I think it's some pretty damn good advice.
She's got you snookered never do what she's done .
Mentally ill, but at least the insurance companies are having a vulture's feast on this medical-addicted, pain-ho.
I've felt at times. Hack it off. The hackers handbook says exhaust all other alternatives. Doing that I guess who's gonna watch your channel ?
@@emilieloveskiwi here's some free advice. Never trade something painful by bidding adieu to a body part ever. Don't wanna explore regional anesthesia ? Fine but no complaints about pricey prosthetics nor any phantom pain issues.
"i'm walking out of spite" is such a mood when you have chronic conditons. All functioning I'm doing today is purely out of spite because eff this. I feel you; we press on because damned if we let this nonsense win.
100%. I gotta be disabled and sick, I gotta be in pain, I may as well do the shit I want to and find a life that's worth it. I'm never gonna be abled or have the life I thought I'd have, but damned if I'm not going to do everything to make the life I do have worth living.
I know my pain is going to get worse, so I feel like there's pressure to push myself too hard to do things before it's too painful...
I used to have a pin that said “Surviving out of spite.”with a little derby flower, but I lost it! 😢
@@karenneill9109 this. Sounds. AMAZING. I want one and may have to bug a friend to make something like this
@@cheea5 this was me this past weekend. Got to do something I’d been trying to do for months…and have been knocked flat ever since. NO REGRETS.
Jo, I almost never comment on the internet as a very private person and I realize you may never see this but, I wanted you to know that you are having a positive impact in the world! Watching your videos was one of the things that gave me the courage to get a diagnosis of PTSD and treatment for it 2 years ago. That has changed my life in such a big way! I don't really know you but I feel a connection to you because of the role your videos played in my life at that time. I am so sad to hear you are still having so much pain. I know you aren't necessarily religious, but I hope you wont mind me sending some prayers your way! I hope you are able to find joy even when happiness is hard to hold onto. Thanks!
I feel bad asking because you said you prefer to be private, but just in case there's a chance you answer can you tell me what PTSD treatment has given you positive results? I'm just kind of stuck and while talking with a T helps I'm wondering if there is a treatment I could ask about that I haven't tried. Sorry for asking
@@robincharles7057you didn't ask me but I've had success with my PTSD thru EMDR treatments. ❤I wish you well.
@@robincharles7057in case OP doesnt answer, I've had luck with emdr for trauma.
Figured I’d throw in my two cents if that’s alright!
For me talk therapy was essential, but medication wasn’t something I found any success with so I just stuck with therapy! What honestly helped me the most in the decade I’ve dealt with PTSD was finding friends who were kind and building a support system of people I could talk to alongside my therapy! My friends were very accommodating about my triggers and took my condition seriously, which gave me a space I could feel safe in a world where I lost that sense of stability. Almost 10 years later now and my triggers still make my uncomfortable, but they aren’t debilitating the way they used to be! Getting an ESA also helped me a lot with relearning how to be responsible as well as having a comforting presence to come home to.
What helped me may not be the answer for everyone, but I encourage you to try a couple different things and see what helps and what doesn’t! I hope at least reading that someone else made it through gives you hope that you can too. Also never be afraid to ask for advice, as long as you’re respectful about it you’re doing just fine! Keep going and have a good life, stranger 💕
@@SaritaEvarista Thank you so much! My support system is limited but not quite sure what to do about that. Tysm, I'm really glad you are doing better
I’m in a similar boat. It’s both heartbreaking and comforting to know I’m not alone. 🧡
Right? I don't want others to experience the hopelessness and dread of neverending pain, but it is nice to have someone who understands what I'm going through.
Same. 💜
zen hugs. i'm 65 and been in pain since 1981 to varying degrees i wish you the best
Same. I wanted to come to the comments and send love to folks who endure things like this and feel that despair, but I also felt guilty for feeling the comfort/relief in not being alone and in the validation of knowing someone else who I consider stronger than me thinks the same things I do when we hit the despair moments.
Despite that guilt, I still want to send hugs and love to Jo and anyone else who hits those points. You're not alone, even when it feels like it at times.
I'm possibly there myself. Had jaw surgery 2 months ago, and... the lower half of my face is numb. It's hard thinking through the possibility that being kissed will never feel as good as it used to, that I won't be able to tell if I spill something on my chin and I look like an idiot with a splotch of ice cream or soup or whatever on my chin that I can't feel running down it.
I'm a fellow chronic pain warrior and just bought myself a sweatshirt that reads "existing purely out of spite". Apparently it was intended for pre/teens who have been bullied, but it just fit me so well! ❤. Realizing how little control we really have in our lives is indeed frustratingly painful, and depressing. I'm glad you are finding positive coping mechanisms that work for you! Keep up the good fight! 💪🏻
Hearing this makes both hopeful and terrified at the same time. While I'm not an amputee. I have been suffering with back pain for almost a year now from a really bad car wreck I was in. I have surgery scheduled for Nov 16th. There's been days where I can't do anything except sit on the couch in pain. Living with chronic pain affects you in so many ways.
My neck surgery made me WORSE!!! Now I have PAIN forever. Best wishes. 🙂
Chronic pain just wears you down. A good day isnt one painfree but where the pain level that day let me do something I like to do. Been part of that club for 15 years now. I have tried cancelling my membership many times (operations not unaliving) but its the gift that keeps giving
I feel you. I was born with scoliosis. I didn’t learn how to walk until I was almost two because the nerves and muscles weren’t supported enough. Most days I’m good and don’t have any pain. But there are days that I’m so much pain I’m literally in tears. I have a really high pain tolerance. So if I say something hurts, it really hurts like hell. My spine has never been curved enough to require surgery. And I must say I’m grateful for that. I’ve known a couple of people who had the scoliosis surgery. Their curvatures were significantly worse than mine. One of my friends regrets having the surgery, the other does not. The one who does had her surgery two years ago. While her spine has straightened up, the pain has gotten worse. After seeing what she went through and knowing how my body reacts to things, I’m doing whatever I can to prevent myself from having the surgery. Even if it I feel later.
I feel for you! Last year in August I hurt my back. I live in a country where healthcare is very affordable and you don’t have to wait for surgery for a long time. Still, surgery depends on symptoms and the first course of treatment is conservative if your symptoms aren’t too alarming. So no emergency surgery for me. Other forms of treatment were tried first. I was put on sick leave. In January, I went in for surgery because of a severely herniated lumbar disc. I could walk (slowly) and leg function, despite pain, was still present. An hour after being returned from the OR I needed to use the bathroom. The nurse insisted on helping me, citing possible sudden drops in blood pressure. My right leg simply refused to bear py weight. But the pain was ok and the surgeon, who was called in immediately to check me out, thought it might be caused by swelling due to him having needed to dig around quite aggressively to remove the herniation around the nerve. I was monitored very closely, given exercises, and I managed to walk… but we remained very vigilant because there was more numbness than pre-op. Within 24 hours of me being discharged, neuropathic pains had me crying through my nights. Nerves can throw major hissy fits after having been pinched off for months. Patience. Two weeks later I was put on anti-depressants because those can help with nerve pain. It helped a little. Still, the months following were hell.
Now months later I’m still far from pain free, still only working half-time and we’re considering more imaging because the herniation might be back. I’ll probably never regain full functionality of my leg. I often have to use a cane. I’ve had second opinions called in, from different specialists at different hospitals. No mistakes were made. the course of treatment was correct. It’s just this perfect storm of me having an extremely high pain threshold and an uncanny knack for compensation that caused the extent of my injury to be masked for so long, that resulted in surgery to have been delayed for months, the herniation being extremely difficult to remove that caused more damage to have been done to the tissue surrounding the nerve in order to be able to free it, and months of the nerve being severely pinched causing what is probably permanent damage. Scans can only show so much. Surgeons are careful but work based on statistics where risk assessment is concerned, and every body heals differently. Now as the weather grows colder, we found out cold is a major trigger, it can completely incapacitate me, triggering pain and spasms going from my back down the entirety of my leg right down to my ankle. Just a few weeks ago I was hopeful I’d be able to increase my work hours. Nope. Two minutes outside and I’m in pain that can get so bad I want to rip off my leg.
I place no blame but it sucks. I hope my story helps you because it shows you are not alone.
Chronic pain sucks and nerve pain is (in my opinion) the worst. Your surgeon might be the best on Earth, he or she still has to work with what he sees when going in and can get ugly little surprises when going in. Chances of full recovery can be close to 100% and you can be one of those 0.01% who gets the short end of the stick.
I’ve got an extraordinarily ornery nerve and will probably have to live with that.
I sincerely hope things improve for you. Hang in there. Part of it is keeping tabs on what you do, how much you do, what your triggers are. I really hope you find what helps you and that things improve. A lot. Don’t give up. I hope your surgery goes well, and that you make a full recovery. Statistics are on your side. Go in with an optimistic mindset, listen to what they tell you afterwards, do the physical therapy afterwards, steer away from what they tell you to avoid. It really makes a difference. Because even though my surgery didn’t go as well as hoped, there was improvement. Even though my recovery wasn’t as smooth as hoped, almost everyone I know who has had back surgery came out of it with major improvement, and the majority fully recovered. You’ll be okay.
I have read that surgery for back pain is not usually successful and may increase the pain. I have heard that pain management is better. If you have the right pain management person-I know a guy that has had severe crippling back pain but now has a morphine pump and takes pain meds daily but he is able to be extremely active and able to do pretty much whatever he wants
TW chronic pain, mental illness
I think this is the first time I've had to stop watching a video part way through and it isn't even anything you've said here. I am so angry at our medical system for the horrible mismanagement of chronic pain. I was crying, furiously, hearing you talk about your hospital experience in that first video and again here. But the absolute bitterness I felt when you mentioned being back on pain medication in the evenings to be able to afford to do things that bring you joy after relating so hard to the difficulty of having to accept that this pain might be forever. I live in chronic pain too in this god forsaken country and have tried so hard, self-advocated just short of begging, to get pain medication for this exact reason. I miss going for walks, I miss being able to be active, I miss being able to go to concerts and hikes and strolls through the park. I feel like I'm not living, but I have to work full time, I have to go to school, and I miss, so desperately, being able to have comfort and joy in my life. I went for a 15 minute walk because I was depressed and dangerously overwhelmed and then woke up at 2AM in so much pain I needed to cover my mouth and nose until I could dissociate enough to stop screaming and it broke my heart that 15 minutes of walking stole 2 days of my life. Absolutely none of this is your problem but this video broke a wall I was holding up and I have no one else to tell except the internet. I am so sorry you are in pain Jo, I wish your surgery had worked and I hope medicine does better in our lifetimes. We deserve it.
Forgive me if this comes across as pretentious or anything, but I'll keep you in my thoughts and prayers. I hope you are able to heal in more ways than one. I wish you the best, you've got at least one stranger rooting for you.
Would you mind saying what chronic pain illness you have? I'm just curious
*hugs* I'm sorry, Jo. Here's to us folks out here living out of spite 🍻 We're with you the whole way and I do hope that you find out that your nerves are just as stubborn about healing as your skin is and that you'll feel a noticeable amount of pain reduction at some point. Much love
🍻 😊
I found your channel around the same time I started becoming physically disabled myself. My disability is one that will cause me pain for the rest of my life, and one that could get worse over time. It takes a lot of strength to acknowledge that the pain is here to stay, and I commend you for that.
Your channel has been a huge insight into daily living as an amputee, and I really appreciate you sharing the ups and the downs. I want to go into biomedical and rehabilitation engineering, and being able to hear the thoughts of people using those devices is so, so important.
It sucks that the surgery didn't help, and it's horrifying the treatment you received, but I'm glad you took us on the journey with you.
As someone who is headed into my 8th year of major nerve pain that the drs say, "sorry, we cannot do anything" I have the ultimate sympathy for the pain journey you are on. I cannot say that there has ever been one thing that helped me get over the hurtle of "this is just my life now", your family and support group is the best thing to lean on when your coping mechanisms are not working. Because no matter what, you will get through that low point and back to living to the fullest you can. Biggest of hugs from me to you. This is life altering pain that unless you have had it, people do not understand. I don't know if it help, but I truly understand. You are strong enough. You can do this. Give yourself comfort and rest when you need it to keep going forward.
Sorry to hear you're going through this, but as always, I admire both your strength and humor.
8:39 exactly!!! I would give it another 6 months, cos that allergic reaction just busted that whole healing process. That's my thought after watching all the videos you did on the surgery❤
I have been dealing with chronic pain for the past twenty-one years; I have fibromyalgia and widespread osteoarthritis. I've been on pain meds for the past eighteen years, and although it has some side effects, it works, and I'm grateful. I'm going to the gym for the first time after ten months of physical therapy and a complete knee replacement, and I'm nearly able to go for a walk again. My goal is to hike and bike; we'll see, but I am hopeful. Take care, Jo; you are in my prayers!!
Did you ever fast?
@neva.2764 what does that have to do with anything? It probably would be better to not start unhealthy habits when you are recovering healthwise.
@@neva.2764 No fasting due to my tendency for hypoglycemia.
Good for you, that's awesome. I hope all the stuff I do for my chronic pain (mostly injury stuff sprinkled with stuff I hope goes away with menopause) will at least keep it from getting worse but it's hard to stay motivated when everything hurts, I'm just glad physiotherapy seems to work so well for me that I CAN see the improvements. I sincerely hope you do get to hike and bike now that you're almost going for walks again!
I felt every word of that, very personally.
All of the above plus some ... and drastic action to get rid of others. Had some of it as a kid (looking back) but the 'decline and fall' started at 13 ... at 50 ... resilience is harder to come by, your world gets smaller, and some of your fears, greater.
Blah. Like I said, I felt that. 💜💜💜
I'm sorry to hear that. coming to terms with the fact my pain is never going to get better was one of the hardest things I've gone thru and I wouldn't wish that on anyone
hearing you talk about chronic pain is honestly the most I've ever felt understood. you put things into words for me that I've never been able to myself
My heart dropped when I saw the title. I'm so sorry, I know you were banking on this procedure to give you pain relief and increased mobility. I've been in a flair of my own chronic condition (CFS/ME) for a few weeks now and I've also been struggling with that "what if it never gets better?" idea. I'm very grateful for what I can do, I can still bake and crochet and play video games and do college classes, and I'm grateful that I'm not in constant or excessive pain. However, the medication that I thought was going to take me all the way to remission has plateaued and I've pretty much run out of treatment methods that aren't complete pseudoscience. I'm 22 so the idea of dealing with this level of functioning for 50+ years to come is something to grapple with for sure.
Same. I have POTS and EDS along with chronic pain and migraine. I have to constantly remind myself that I can keep going and that I’m lucky I have the ability to be in college leading a semi-normal life. But every time I flare I worry that things will never improve.
btw, have you heard of the October Slide? it might help explain your recent flares
I'm in the same boat. I'm still so young, and to think that there's a possibility I could feel even worse than I do right now is terrifying. I'm just holding on to hope and trying to keep fighting.
I know exactly what you mean - the thought of never getting better, that this is your best, and you have many decades left to live, is terrifying. My disabilities are psychiatric, but life-altering and chronic since age 16 and I'm 36 now, still unable to work and do a lot of the things I'd like. I've been in the constant mindset that "when I get better, then I'll do x", but I will NEVER get better than this. It's such a smack in the face. Other people can do SO MUCH, and you can hardly get by on a very much lower level, and there is NOTHING you can do about it.
In my next therapy I really need to talk about accepting my life, to not constantly see myself as a "failure" despite objectively being one. I can't read biographies about psychiatric illnesses any more, because they always end with on a positive note, that the person recovers. What about us with chronic illnesses? We'll never recover, we're stuck in this for the rest of our lives. I was very good at fighting against suicidal tendencies when younger, but now when I realise reality will never change I can't help but wonder if it's worth it. Why just keep suffering? It's not an impulsive thing, it's more logical and weighing pros and cons - is it really worth this severe suffering with so little joy and function?
@@sarahstambler3005 I hadn't heard of the October slide before this year but it's interesting for sure. CFS sometimes causes dysautonomia and is theorized to come from a similar source, and it seems like people with dysautonomia are most affected
@@rockercaterrorencountered4924 A medication not working as hoped for is so frustrating! I have Long-Covid and thought that I finally found out what's working for me after 1.5 years so that I could at least do some things at home.. but it got worse again and now I feel stuck. And the emotional toll it takes to hope and be disappointed over and over again is huge
My pain is not as intense as yours, but I can relate to the hopelessness of it being neverending. I, too, haven't fully come to terms with the fact that it isn't going to get better.
I wish you well, and hope you experience as much peace and happiness as possible with the body you've been given. ❤
Hi 👋🏽 Chronic lifelong nerve pain sufferer here. I definitely feel this. The angst I felt (and still harbor) when I finally realized that I had to grieve my old life bc this is as good as it’s going ever be again was/has been/is palpable. It hit the hardest, even though it still makes me giggle when I think about it, when my family & and would talk about me replacing some of my body with bionic parts, like Cyborg. One day, when my youngest was 12ish, we were discussing this while some random body part was killing me & he said “if your brain is misfiring signals, then you’d still feel that pain no matter if you have that body part or not, right?” Damn kid ruined my dreams of having superpowers, learning how to drop into a halfpipe, enjoying a mosh pit again, teaching my kids to ski/snowboard, etc. It sucks. The whole thing sucks. And I hate that you’re also dealing with some really shitty grim realities. Bc it just absofuckinglutely sucks. XOXO
as someone who is also constantly trying to battle the despair about probably being in pain forever, I'm sending lots of love your way 💙
Omg I am so so sorry Jo... I cannot imagine!! Especially with how hard this surgery was with pain and your reaction
Sometimes, Spite can be the best motivator to get through things. Though it can be exhausting as well. Sending good vibes your way, and hope things get much better, in the future!
I really hope that even if at the moment, there's nothing that can be done, that down the road there's medical advancements that can. I'm so sorry for everything you've been through. ❤
I deeply resonate with "functioning out of spite", and I am SO sad to hear that the TMR has not been successful. It's a powerful and terrifying thing to HAVE to shift your paradigm to the
'it's not going to get better" side of things. I hope SO HARD that you find healing in your various endeavors.
I'm so sorry to hear that the surgery wasn't successful Jo, sending you so much love! And I will now be using the phrase "functioning out of spite" in the future haha
I’m sorry to hear the surgery didn’t help. I’ve been a chronic pain patient for many years, so I know losing hope is devastating. I know this wasn’t successful, but I hope someday you can find a little relief through a different path.
I will never forget my mom asking why I told my home health nurse I was in 5/10 pain… because I am honestly it was probably worse. You can’t see chronic pain and I wish more people in my life understood that even with meds it is never below a 7 anymore. I would give anything to be pain free, as we all would too. I am sorry you had such a bad recovery but thank you for sharing the real part of recovery it isn’t easy or always pretty
I told my hubby recently I have come to the conclusion that I will never not be in pain. I have lupus and must just learn to live in some level of pain constantly because no amount of meds will make it go completely away. 😕
i have chronic pain too and it really sucks to hear that your surgery didn't help with the pain. Wish you all the best with dealing with that, physically and mentally and emotionally!
So sorry it didn't work. I'm on my 6th surgery after 4 turned out to be useless. Total wrist fusions in my 40s. The existential horror show of "this is the BEST I feel?" is so real and I'm glad you're talking about not "going there" because many of us are in a similar boat. My entire body is falling apart, I have multisystemic diseases, a lot of "you're too young for ...." but I'm glad your lil corner of the internet exists where you aren't pumping snake oil and pollyanna advice.
jo i’m not physically disabled but i am autistic and i relate to every single video you make one way or another. it’s crazy how our disabilities and experiences are so different but yet here we both are trying to accept the idea of It™️ possibly not getting better, like, ever. sending all my love, you are an incredible human💛💛
No where near the experience you are going thru, but the phrase "Pain Exchange" resonates with me, in trying to be active out of spite of the pain.
Chronic pain in my right knee (Grade IV deterioration of cartilage), in my left hand (ulnar nerve damage), my right shoulder (scar tissue from severe dislocation), left ankle (who knows, MRI this weekend).
That realization struck me as I turned 31 this year, the pain I'm feeling will likely not get better, will likely get worse, and at some point prevent me from doing things outright.
I will say, "learning" is a great way to deal with pain. You get yourself in the flow of study/learning, it removes your mind from the pain you carry.
Thank you for sharing your experience with us.
I was left for 8 hours after having a full knee reconstruction without any pain meds because I started bleeding from the surgery site and they rushed me back to the emergency and sat me there with no meds for over 8 hours after surgery. One of the worst experiences of my life.
I hope it gets better for you. You are brave and strong and you got this.
Thank you for sharing for the people who need to relate and understand. Hope it is life changing in the long term.
My leg was amputated in 1974 while I was being treated for it, a therapist gave me instructions on self-hypnosis. It makes a world of difference, especially if you have nerve problems that aren't related to physical damage to the stump. I would highly recommend it.
“Especially is you have nerve problems that aren’t related to physical damage to the stump”???? Pretty sure all nerve problems in one’s stumpy are related to physical damage in the stump. Cut nerves off and they’ll always be a problem and always related to damage to the stump. Not sure what you mean here (as a BKA here).
@@anniecastiel1632 I'm talking about the difference between phantom pain and irritative pain like from a blister or an ingrown hair. Some pain treatments will eliminate both when you definitely need to be aware of the latter.
As someone with chronic pain, your speaking your thoughts about it is comforting
Glad to hear you're working on this in therapy. It's taken me years to get there, but learning to accept that certain issues are permanent has weirdly lifted a weight for me. I hope in time it does for you too
Oh no! Jo, I am so sorry. I was really hoping that the surgery would have helped. I truly wish there was something I could do to ease the pain.
I have fibromyalgia and widespread pain specially in my legs and back and I honestly genuinely understand everything you said in this video. I personally don't have access to pain medication and also have to study alot if I wanna survive. I literally have no other option. I relate to alot of what you said here.
Have you looked into Ehlers Danlos Syndrome? It's often mistaken for fibro or causes fibromyalgia and it's often missed by doctors.
I know that despair (chronic pain, wheelchair user). Luckily I have one close friend with.similar experience (wheelchair bound, pain and loss of mobility) so when either of us get lost in the negativity we can talk to the other and remind each other that the truth is that we move forward (as slowly and as awkwardly as our bodies move) and unless we stop living we may as well just keep on trying to find things that make our lives more enjoyable, bearable, manageable and so we do. Bursts of self pity and anger are allowed, but serve little use, so do a meditation or go for a float (if you're able), cuddle the dog then back to the practical. Every time another medical intervention results in further negatives I'm left wondering how useful the existing medical system is when it comes to chronic issues...Take care Jo, sending positive vibes your way.
I’ve been left without pain meds before (broke my leg, put in a plaster cast that did not fit and put more pressure on the injury, and then sent home alone in a taxi without medication). It’s definitely traumatizing to be screaming in pain with no one around to acknowledge or help.
I was sent home from the hospital after debridement surgery from a third-degree burn with a wound vac without the proper seal and I had to rip it off six hours after surgery myself, I literally almost passed out from the pain! They also gave me pain meds that I couldn’t even take because they interacted with a medication I was on that the doctor was well aware of. That coupled with three days and nights of insanely weird and scary and actually pretty terrifying dreams from the anesthesia it was honestly one of the most traumatic experiences of my life and I’m absolutely petrified to have surgery again not only because of the actual surgery and healing but because of the terrifying dreams from the anesthesia
every time i've moved, i've seen a new orthopedist just to see if there's ANYTHING that could make my chronic pain better... and every time, i have to re-grieve the fact that this is the best it'll ever get because things will degrade with age. giving up on getting better is one of the worst feelings, and yet it's necessary.
That's so disheartening!
All the encouragement, good wishes, and support from an internet stranger. You did the best with the information you had in making the decision about surgery, and you're doing the best you can now. Be it activity or resting.
I totally know how you feel about not knowing an end date or not knowing what is happening or why feels.
Hope is within you.
I’m currently going through a similar mental process and I’ve had two emotional breakdowns in public.
Please know though that I hope we both get through this.
Thank YOU for taking the time to update us. Keep being you Jo!
I am so, SO sorry you went through all of that. you are so strong and brave, i hope you know that. i am so glad to be a part of your journey, you’re an inspiration and i mean that
I feel you. It’s incredibly hard when you’ve run out of realistic options for improvement. I hope your allergic reaction and other issues in the hospital just set your body’s timeline back a month or so.
Thanks for sharing your reality, Jo. There are a lot of folks here that understand where you're at and can relate. I take a medication called amitriptyline at 10mg daily that helps with my nerve pain. No idea if that's something you've already tried but just wanted to put it out there. Appreciate you ❤
Glad it works for you. I had the bad sleeping side effect which scares me silly and had to come off it…. And it didn’t work for the thing it was subscribed for. 🤯
Try Gaba
I personally prefer pregabalin to gabapentin.
That is a lot to go through, thank you for sharing. I'm glad you are trying out things that bring you joy while experiencing a lot of pain. I wish you the best, whatever the best for you might look like for you, now and moving forward.
Thanks for the update. I am so sorry about all the pain. That just plain sucks. ❤
This hit hard for me. It’s terrible but I feel you. Knowing realistic that maybe where we are - which is not good - is as good as it’s going to get because of our chronic pain is terrible. It puts me in a lot of despair sometimes too
I'm so sorry to hear that Jo... I don't know if it helps, but I'm really impressed by your attitude, by how positive you still are. I hope you can have many good experiences despite all the pain and setbacks!
You are A true Star! Please dont ever give up !
You are GLOWING! And a big smile. Best of luck to you!!!
Love you're videos lo you are always amazing
When you get to the point of "I will never get better. The best I can hope for is to stay the same as I do now but, realistically, I will likely only get worse" is one of the hardest things about being chronically ill in general, and, imho, it's even worse for those with chronic pain. Surviving out of spite, and my pets, are the only reasons I'm still alive.
Well, and finding a mental health medication that actually works for me. But even then, there's only so far I can go with that, right? Because staying at the same dosage, or going down, is almost unheard of when we're looking at long-term support. We will always have to up my dosage (even if it takes a long time in between increases). So what happens when I max out? It's a horrible equation to have to try and solve, but I'll have to do it eventually. I just hope that "eventually" is 20+ years from now. Or that there are radical improvements in both chronic pain and depression treatments, and the way doctors view those conditions, but I think it's more realistic to count on me waking up tomorrow and having no pain whatsoever.
You are awesome. Thanks for sharing this journey. I'm really sorry it didn't work. I'm happy for you for trying to move on and start new projects, reading and studying, and everything.
I'm looking forward to what future Jo will bring us! :)
I am so so sorry. You are so strong. Keep on keeping on.
This is tough, fam. I'm sorry that this didn't work so far and I'm glad that you've resolved to live life in spite of this.
Hi Jo, my top tip for not stabbing yourself with the pin is to just unscrew it from the liner and store it in the socket whilst you’re not wearing it. At least that way I never loose mine. Another thing you can do is get a shorter pin as they come in different lengths….
I’m so sorry to hear the surgery wasn’t a success, after everything you fought thru having the docs confirm it hasn’t worked is like a sucker punch to the stomach. I was looking into this surgery but over here in the uk, i was warned that the success rate wasn’t the best and after having way too many complications with surgeries in the past I didn’t go ahead. I have heard of some having Botox injections and ice therapy along with the IV Beirs blocks/ femoral nerve blocks as a way of dulling the pain - to allow your body a dulled pain holiday to recharge or to get some decent sleep.
By any chance do you still wear your compression socks as this can really help along with wrapping you leg with a heat pad or using those heated socks over your compression sock.
I like how you said I carry on in spite, trust me that’s how I do it too, 😁 I know for me having CRPS type 2 there’s no cure so I’m just doing as much as can for as long as I can. I know I’m going to have this for life so I focus on keeping my fitness levels up and I’ve found this really helps along with being creative with ways to distract my attention away from the pain. It’s not easy but at least this way I don’t have to constantly be poked and prodded trying out every new surgical idea, which wore me down with the complications that came with it. Yes I have to have more sofa days and it can get you down but at least I’m not always recovering from procedures and surgeries anymore. sending hugs and the best wishes your way Keep shining Jo, you’ve got this! 🤗🦿🤗 living out of spite club 😉😁
Thanks for being a brave person!
Also I just love you brutal honesty and willingness to be vulnerable.
I'm really sorry that you had such a horrifying experience and that it didn't result in improvements. Being okay with not being okay, without tipping over into despair and destruction, is really difficult. I know you'll find your way. ❤
7:25 I am the same way with my chronic pain. I know there's probably only so low I am going to be able to get my pain... It's sucks. I want to have hope that I will one day be pain free but most likely I won't and I've had to slowly come to terms about that. I hate it and it can be depressing sometimes
I wish I could just give you a hug. I hear your frustration in your voice. I am so sorry
You are a wonderful and kind human being, I admire your strength♥
I hope the pain gets better. Even if it is only a little bit. ❤
I have MS and Chiari Malformation and I learnt you have to shoot for manageable pain, maybe not pain free but pain you can deal with on a daily basis. Prayers and love ❤️
Have you looked into Ehlers Danlos Syndrome? I'm sure you know but it can cause both chiari and MS.
I'm so sorry that happened to you. I'll be going through my amputation after the first of the year and feel so blessed that I found your videos on UA-cam. I'm not nearly as scared as I was before. I just wanted to say thank you for your positivity.
I came across your video about going under and I began to see your story on your accident to all the hard and painful years you have so strongly went through. You are a brave and cheerful character is just incredible and I have incredible respect for you. You ROCK!!!!
I'm sorry the surgery didn't work for you. I hope someday you find something that helps even a little with the pain. I do not wish for you to suffer with this.
I'm sorry it didn't work Jo. :( I wish there was a way to disperse the pain between all your viewers. I'm sure we'd all willing take it on to help you out.
So sorry to hear that! I hope you can continue to have the wonderful life you deserve 💜
Love you, Jo. Continue to be strong and wonderful.
Sorry to hear it didn't work. As for not poking yourself with your pin: you could probably make something out of a pool noodle and duck tape, to put over the pin when you are not wearing the leg, to make it safe.
Maybe some kind a silicone cap for it?
As someone who had to come to terms with the fact that I will be in absolute agony for the rest of my life, my body will probably get worse as a grow older (it’s progressively worsened as I’ve grown but I know a lot of people who stop worsening when puberty is over so I’m not 100% sure) it’s terrifying, and it’s hard. I became disabled very young (12) and had chronic pain as long as I could remember (I only found out it wasn’t normal when I was in double digits cause I joked about it and got that stare*tm*) so for me, being disabled wasn’t an insane adjustment, it was bad, I gave up many things I loved (I’ve found new ways to enjoy them but it took a year or so) but it only took a year or two, and a couple years on I don’t know how’d I’d function able bodied (I’d have to learn how to walk, and read, and do everything differently) I’m very comfy with being disabled. But watching your body fall apart or worsen,is terrifying, I don’t know if I’ll lose something forever, idk if it’ll be my last day doing xyz, but even if I was able bodied that’d be true. My quality of life is not the norm, but it is not hopeless (rn it sucks, but that’s cause getting my medical equipment is hard to get and the American healthcare system sucks), if I lose something, I will gain something else, I will carve myself something new, it will not fill the void, but it’s not as scary. I am not an empty husk, and I won’t be, I have adjusted and changed, and I will do it again. I will enjoy life because I deserve to.
There may not be a light at the end of the tunnel, but i need light, so I’ll make a fire, or a circuit system, or chisel my way out.
You will be able to enjoy life, you will be able to enjoy new things, and you will be able to have fun, you will lose many things, but that’s life (although as a disabled person I’m a lot more aware, able bodied people will deal with it as well) your body will worsen with age regardless, your body will hurt regardless (I don’t often know adults or elderly people who aren’t in pain), you deserve to enjoy life, so find things now (while it’s not a major necessity) that you can do while in pain, that you can enjoy when you can’t walk, adapt the things you love to be even more accessible (you like hikes, find out wheelchair accessible trails, stuff like that). Realism is your best option, but remember, there will /always/ be good, it’s okay to be scared, but know, you will find enjoyment, and happiness, it exists, and you deserve to have it, so search for it, and if you can’t find it, make it.
I really needed this today. Thank you.
I am so sorry to hear this update from you, Jo. I’ve been following your channel for a while and I’m truly wishing the best for you❤
I’m sorry your second surgery didn’t help as much as anticipated. I know a knee replacement isn’t like an amputation, but it took a year before I was able to see the improvement. I pray you can get relief from your nerve and physical pain. Pain is so hard as people can’t always see your pain outwardly. However, pain is definitely a horrible thing to deal with day in and day out. My dad had horrible nerve pain from a back injury and underwent multiple back surgeries to try to solve the pain problems. The very best relief he got was from a dorsal column stimulator that was implanted. It’s like an interns TENS unit. He had many years of dramatic pain relief without narcotic pain meds. Unfortunately, when the battery pack had to be replaced, he got a staff infection and the whole unit had to permanently be removed. I don’t know your history with medical care for your pain, but I’ve heard of pain pumps that can be used to get more targeted relief from pain. I know that leading a life in a vicious cycle of pain medication can be very harsh on a body. Could be worth checking into, if you haven’t already, though see if it can help. Prayers that your body is still healing and the pain lessens more for you. (((HUGS)))
Oh Jo, I'm so sorry your still suffering from pain. You are such an inspiration to others, Karma could give you a break from the pain. It's a different situation, but I still get pain in my C-section scar, it's been 26yrs, not everyday, not every month, not horrible, just letting you know, don't forget about me. What a Warrior you are!
My sister finally discovered that her uterus had been sewn into the c-section scar, and had a partial hysterectomy. After 20 years of pain and bleeding, it was immediately gone.
In my case I had a hysterectomy right after the birth, I had Placenta Acreta. No saving the uterus.@@karenneill9109
@@karenneill9109 Wow, I've never heard of that. Thanks for sharing this. You learn something new every day. C-sections are so common now. I feel bad for those not knowing what could be causing pain
Virginia, sorry to hear about this
@@LivingWithChronicPain2 Yes. I hadn’t heard of it before, but it makes sense how that could happen. My sister had terrible bleeding, and they finally went to do a hysterectomy, and discovered it was entangled. The surgery was a little more involved than they planned, but she has had such relief since then. Your username kinda says it all… I get the chronic pain thing- I have EDS, MCAS and POTS, and chronic pain is definitely a pat of my life too. I hope today is a good day!
Sending you love and, as always, your transparency and candor are priceless treasures in this world. 💓
I'm so impressed with your commitment to life. I think over the years you will give so many blessings to people without realizing it. I'm 83 and I've seen so many people withdraw and be pain. You are multifaceted and supplying hope ....
If you're not including lots of trans people in conversations about gender, and not including lots of queer people in conversations about relationships, then your discussions will be hopelessly blinkered and reductive. I'm not trying to be disrespectful, but every time I've listened to or read what unqueer people say about gender and relationships, I want to scream at them because there's just so many implicit assumptions just left in place and not at all questioned or examined. I love your work but I haven't been able to bring myself to listen to the podcast because I know I'll just be wanting to scream.
Upvote? Interaction? This comment needs to be seen by more people.
That's a very good point! And it should absolutely be doable since they're bringing different people in every time anyway. 😊
I agree with your points in general and I believe as they have a lot of different panelists, it should be possible to invite a wide representation of gender/orientation. But the podcast was clearly inspired by the crazy stuff that is targeted specifically at cis hetero people (alpha male , trad wife etc.). So if that is the focus I think it is valid to initially focus on these issues. I mean an open view on gender and relationship types actually does a lot to counteract these crazy ideas but I feel calling them out for focusing on a specific topic for the start is unfair.
You can’t get pissed off at someone without even giving their content a chance.
I listened to the first episode and it was fun but there was a distinct lack of acknowledgement of queer forms of attraction. One of the panelists, who said later in comments that he might be on the ace spectrum, was told he just hadn’t met the right person yet. I know it was all said with good intentions, but it was still a harmful message. In my experience as a queer person with a lot of cishet friends and loved ones, having a queer perspective helps cishet people unpack their assumptions and allow them to examine what makes them happy in relationships, gender presentation, etc. Saying this not to say that queer people exist to serve the straight/cis, but to say that including queer people in a podcast aimed at a cishet audience is good!
Much love to Jo! ❤
Thank you. I cannot thank you enough for this video in particular. I’ve been dealing with sudden onset epilepsy for a year. The pain is intense and a couple other things are going on that are particularly draining. I don’t think it’s going to get better for me but hearing about how you’re choosing to live your life despite it all while also taking care of yourself really warmed my heart and gave me a glimmer of hope. So thank you. Thank you so so so much❤
That must be really hard to think about: that you had the elective amputation surgery, originally, to help alleviated the pain you had..and yet you are still in pain. You are a survivor!
I’ve been following your videos for quiet a while, and something that always stands out is how you just lay it all out there - the good, the bad, and the ugly :) Your videos have a way of pulling people into your world. It’s the realness in your storytelling that does it; you bring us along for the ride. It’s rare to find someone who can talk about life’s complexities without sugarcoating or overdramatizing. You could be anywhere in the world doing anything but you chose hang out with us for a few of minutes and we really appreciate it :)
Congratulations on your podcast! I’m looking forward to listening.
I’m so sorry for your terrible experience following your surgery. Sending you love… ❤
I haven't been in a mental space for months to watch this type of topic due to my own health struggles. But I watched this one through & it's very helpful to hear you say those fears aloud. Thank you for your openness with us 🤍
Sending you all the love.
I have just recently had a below knee rhs amputation just like you have and I’m going through the same shit that you are. I find that following your channel is helping my sanity because I can relate to you so I want to thank you from the bottom of my heart for everything that you’ve said as I see a different perspective on this stump and I’m waiting for my prosthetic leg to be made (1st fitting jan 30) . Please keep up with the vlog/blog as they are an insight to all amputees of what to look forward to and please know we all are there for you as much as you are here for us! Thank you x
jo, something that helped me with my avoidance behavior was radical honesty - mostly with others. i couldn't sit with myself in reality, but i found i was able to do it with others. so i did. i was very blunt with other people about my ass*ult, about my transition, about my illness, about my trauma, about my grief, about my emotions - and hearing it over and over and over again made it easier to be honest with myself. i'm not saying it will work for you, but i am saying that sometimes finding someone that is earlier along in the journey that you can just spit words at is the key to moving yourself along too. hugs.
I never thought in a million years that i would enjoy content like this so much. I think i saw one of your shorts and i was like wow shes really upbeat and funny... so i subbed... and ive been watching your videos like... all freaking day lol... i think i even teared up at one point... you have a gift.
Those of us who are familiar with chronic pain feel for you. That is a real character challenge. Thanks for the issues you discuss and the realities you discuss. Thanks, love your attitude.
Oh no, I'm so sorry! Thank you for sharing this with us.
And the podcast is great news.
LOVE YOUR PODCASTS....HANG IN THERE....KEEP THEM COMING!!
I admire your resolve.
Don’t ever except things won’t get better. I have lived with chronic back pain off and on for years. I hope some how some way your pain will let up. You deserve to feel better.
Thank you so so much for your honesty and vulnerability. There are so many people surviving in spite of chronic pain, it can be so isolating. I hope that sharing the dark space can help us feel less alone.
🫡🩷🐕🐕 Dear Jo, bless you. I wish you and your pups peace, love, true grit...and yes, that elusive miracle. In fact, several of them, keep 'em coming! 🕊🩷🌠
WOW! Good video. You are such a strong young woman! Thank you!
Knowing that it will never get better CRUSHES me. Absolutely CRUSHES ME. Thanks for sharing this. I hope your nerves do get better.
Thank you for your videos. I look forward to see your progress!
You are awesome for sharing your journey.