"Becoming Incurable" - Disability & Chronic Illness Documentary

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  • เผยแพร่เมื่อ 5 ต.ค. 2021
  • Becoming Incurable is a documentary feature film that explores the transformation of three individuals who became diagnosed with chronic, incurable illnesses.
    The film’s mission is to empower, educate, and surprise viewers through three affecting narratives shaped by their chronic illness journey.
    Support the filmmaker by donating!
    Paypal: paypal.me/victoria1000?locale...
    Venmo: @Victoria-Suan
    Film Website:
    www.becomingincurable.com

ความคิดเห็น • 157

  • @963ag
    @963ag ปีที่แล้ว +50

    The United States needs to completely reform its SSI and SSDI system - the disabled struggle with a pittance; with today's inflation it is nearly impossible to provide for even basic needs. The young and the healthy often judge, saying things like " prepare for retirement early." " go to work." and " you get what you have put into it over the years, etc." But a catrastrophic illness/ disability can happen to anyone - young, old, professional, educated, and devastate them economically and emotionally. And not every one has family who are willing or able to help- many of the disabled are childless and single, their parents have died, or are older and have health issues themselves, siblings may be too involved in their own lives, live far away, and providers only do so much - it is a horrible existence.

    • @ellen3883
      @ellen3883 ปีที่แล้ว +8

      I understand this wholeheartedly

    • @jenniferbowie2773
      @jenniferbowie2773 4 หลายเดือนก่อน

      You don’t want more government control over heath issues it will only mean more disability and death. So not a good idea

    • @YAHWEH_TSIDKENU
      @YAHWEH_TSIDKENU 4 หลายเดือนก่อน +2

      💯💯💯💯💯💯

    • @lynnjudd9036
      @lynnjudd9036 23 วันที่ผ่านมา

      The amount that people on SSI and SSDI can earn through work without loosing some benefits needs to be raised to encourage working rather than penalizing it.

  • @bingflosby
    @bingflosby 5 หลายเดือนก่อน +11

    Multiple sclerosis and fibromyalgia
    Life is so difficult

    • @eviefittell2937
      @eviefittell2937 หลายเดือนก่อน +1

      Sending love and prayers. ❤

    • @jodisoakenwolf1950
      @jodisoakenwolf1950 หลายเดือนก่อน +1

      Try looking into carnivore diet.

    • @tracywatts1459
      @tracywatts1459 หลายเดือนก่อน

      @@jodisoakenwolf1950. I’m seeing a lot of doctors today promoting carnivore and keto diets. Watch. Hope for MS. Can be found on TH-cam. Or google. The cure.

  • @QurVgn
    @QurVgn ปีที่แล้ว +93

    I have late stage Lyme - no family or close friends, which is the hardest part. My family disowned me when I became ill. Thank you Victoria, for making this. 💕

    • @maryhelen1011
      @maryhelen1011 ปีที่แล้ว +12

      This is so sad. I hope you've found peace and help through your illness. I pray your good days are more than your bad days. Sending unconditional love to you. ❤

    • @eileenwatt8283
      @eileenwatt8283 ปีที่แล้ว +6

      I hope today is better than yesterday for you if it isn't keep hope that tomorrow will be better than today.

    • @Robin-lh9wr
      @Robin-lh9wr ปีที่แล้ว +5

      Praying for you ❤️🙏

    • @chryspersons2336
      @chryspersons2336 ปีที่แล้ว +6

      Oh Harriet I am so sorry this has happened to you! Some people can’t accept reality and end up hurting those they love the most. Know that you are loved and I will be much in prayer for you. And praying for you and your families reconciliation!! It does get better! Stay in the fight! ❤🎉

    • @duketta
      @duketta ปีที่แล้ว +4

      God bless you. Some people are finding relief through the carnivore elimination diet.

  • @andidreyes5323
    @andidreyes5323 10 หลายเดือนก่อน +24

    I wish I had my old body back...I wish I had my brain working correctly. There are bouts of depression that I am better at keeping away. But I can't get my family to fully understand the feeling of being a stranger in someone else's brain. Some times I'm better but still I will only get worse. Accepting that I am not nor can I ever be...who the girl from before was...that's complicated. Sometimes you have to learn to say goodbye to your own reflection of who you were.

    • @Crrly
      @Crrly 9 หลายเดือนก่อน +6

      It's hard, isnt it?! I feel exactly the same way. ❤ to you.

  • @eileenwatt8283
    @eileenwatt8283 ปีที่แล้ว +34

    Every healthy person watching this be grateful for the gift of good health. Don't take it for granted.
    It's sad that health care professes are still using old assessments to evaluate pain fresh holds.
    We need to listen to the patients and not judge. Pain is what the patient says it is and not what the text book says.

  • @Sorrynotsorry47
    @Sorrynotsorry47 7 หลายเดือนก่อน +32

    Watching this as I'm on the edge. My heart breaks for everyone going thru debilitating chronic pain. Ive been 95% bedbound since june, no pt-no-home health care etc, all ordered but nothing. Last time I worked was 2012, applied and denied for disability. Could not reapply because I had no more work credits, and I'm married with my spouse making too much at 45k. Just mentioned that in hopes someone knows something i don't. I take an opioid but ive been cut off multiple times for no reason, literally from 90mgs for 2 years to dropping cold turkey with no explanation and no tapering. The withdrawal almost killed me. I'm in fear every month that it will happen again, it's not even enough, if it happens again it will kill me one way or another. I have a Tethered Spinal Cord, detethered but it retethered. What people do not understand is that NO ONE WANTS TO LIVE LIKE THIS! No one deserves chronic pain.

    • @doveseye.4666
      @doveseye.4666 5 หลายเดือนก่อน +6

      Sorry @Saggy91, I know what your talking about and the bed bound is scary, do you have some sort of contact since your mostly in bed?? I never heard of a tethered spine, not sure I want to know because I have a problem visualizing things since you say cut and I get visions. No, no one deserve chronic pain, it’s something you bolt from not bring along side of you and withdrawals are the ugliest thing to feel and when you know you will face them and they inevitably build makes me so angry.
      I have severe AS and severe damage from inflammation of AS by now being hunchback in a wheelchair though I can walk I am a caregiver to an adult child who is severely hypotonic, I gave up 10 years of opioids, NSAID and Fentanyl and went off cold turkey, that nearly killed me. I’m old and in Canada, it’s better here, I hint your in the states, can’t believe people don’t have healthcare.
      Hope your better today.

    • @Mckenna12502
      @Mckenna12502 4 หลายเดือนก่อน +3

      I wouldn't stop trying for disability if it's a different diagnosis like a depression on say a bipolar level of severe depression due to the illness but not caused by....As for your pain control they can NOT legally just cut you to nothing even though it's beyond WRONG taking away the only bit of relief they have to taper you i forget what you say to the doctor but you can probably find it on anything regarding the question of your overall health care .Also if your not seeing a pain management specialist bord sertifed i really hope one is close enough and taking patients they are trained in pain control And a orthopedic doctor i know it's alot but you don't no one deserves to live a life of that level of pain...

    • @jhemnes1
      @jhemnes1 4 หลายเดือนก่อน +2

      I'm sorry you are going through this😢

    • @lisae6725
      @lisae6725 3 หลายเดือนก่อน

      @@Mckenna12502people have to know that they will almost deny everyone initially so you have to do the appeals every time but make sure you get a lawyer who does nothing but disability cases and have them help you with all of this. I tried doing it without a lawyer and it was getting so upsetting. The lawyers who do disability won’t need to be paid unless you win, then I believe you will have to pay them 6% of your award. Don’t give up. You also need to focus on the fact that you’re not reliable anymore due to the fact that your symptoms come and go and change every day or even several times a day. There’s things like the sweating, nausea, heart racing, etc that make any pain conditions worse so think of everything that makes you feel bad. Sometimes a person can’t tolerate heat or cold and many work places have constant air conditioning. It’s ridiculous that we even have to worry about how we’re going to care for ourselves when we live in the richest country on the planet.

    • @pursedelighted
      @pursedelighted หลายเดือนก่อน

      So sorry u are going thru that

  • @Crrly
    @Crrly 9 หลายเดือนก่อน +21

    8 years ago I was diagnosed with Ehlers-Danlos Syndrome (classical type) . My life is now mostly spent in my bed. For all that suffering with chronic conditions: big, warm hugs to you. ❤ For all healthy people: don't take your health for granted, and a hug to you as well. ❤
    Such a great but heartbreaking documentary!

  • @lj9524
    @lj9524 ปีที่แล้ว +38

    As a human being these stories break my heart💔 As a RN these stories break my heart 💔 As a cancer survivor these stories break my heart💔 I wish everyone on earth would watch this documentary and understand 🙏🙏🙏🙏. Thank you!

  • @Chelle1214
    @Chelle1214 2 ปีที่แล้ว +50

    Leo's wife, kids and mother are complete rocks. As someone who is severely disabled and incurable thanks for making this but thanks also for highlighting carers, they are the real unsung hero's.

  • @kristineanderson4983
    @kristineanderson4983 7 หลายเดือนก่อน +9

    I have Fibro, ME/CFS, RA, and all that goes with those. In addition, my spine is a mess so I'm in a motorized wheelchair. No pain meds! No family support! Friends can't understand (maybe someone could if willing to listen). Fortunately, I am an introvert and love my time alone, however, I would like one person willing to listen, one time.

    • @pursedelighted
      @pursedelighted หลายเดือนก่อน +1

      Awww.i hope you feel better. I do understand. Take care

  • @jhemnes1
    @jhemnes1 4 หลายเดือนก่อน +5

    I've have Rheumatoid Arthritis and while I hurt and struggle with crooked hands and joint pain all over I just can't imagine going through what these people have.
    Those video shows how important it is to vote blue. We need Medicare for all

    • @tracywatts1459
      @tracywatts1459 หลายเดือนก่อน

      That’s the one thing I am great-full for as a Canadian. Having full healthcare coverage. Our taxes are over half our income but everyone is covered accept medication. We pay for meds. One thing the Canadian College of physicians and surgeons do not recognize Lymes disease. I even heard a doc say there is no Lymes disease in Canada. I call bullshit. If it’s south of the boarder it’s here too. As if birds and wildlife packing the critters don’t cross boarders.

  • @bellaseymour8604
    @bellaseymour8604 4 หลายเดือนก่อน +6

    I have AS, I was diagnosed at 18 after 8 years of fighting for my right to be taken seriously by doctors (who told me I was fine). I'm turning 21 in two days and even after an invasive hip surgery two years ago, I'm struggling to cope with the continuous pain. It never goes away, it's always there. This is the first time I have ever seen a video of someone recounting their experience with AS, and I feel so seen. Thank you Victoria, from the bottom of my heart

  • @intherockies
    @intherockies ปีที่แล้ว +19

    It's sad and makes me mad that people who need pain medication have to jump through hoops and word things just the right way because of those who abuse the drugs.

    • @teridoyle2120
      @teridoyle2120 8 หลายเดือนก่อน +3

      Not only that but most prescribers are following “DEA Guidelines for Prescribing Narcotics”even tho they are only a suggestion not required which says 90 ml morphine equivalent is the maximum dose. That is equivalent to one 15 mg oxycodone 4x daily which is a VERY minimal dose for chronic pain patients, especially if they have been on narcotics for an extended period of time. Many patients’ narcotics’ doses were decreased from much higher doses down to the 90 mg morphine dose daily. This was done way too quickly for most patients who then unfortunately went into withdrawal and turned to the streets for pain relief and are now either on heroin now (cheaper) or committed suicide because they couldn’t live with the pain. So sad.

    • @kristineanderson4983
      @kristineanderson4983 7 หลายเดือนก่อน +3

      @@teridoyle2120 It's the CDC 2016 guidelines that messed everything up, no thanks to PROP.

    • @pennyc11
      @pennyc11 5 หลายเดือนก่อน

      Yes. My life has been greatly reduced because I can no longer get regular vicodin. I had to give up driving and so much of my life is spent waiting to get somewhere or get home.
      Vicodin has negative effects on some people but for me? It brings my pain level down enough so it won't upset my brain and improves my concentration. It is so sad how ignorant so many doctors are and chose to be.
      Our medical records should be enough proof that certain meds are wotking for us.

    • @tracywatts1459
      @tracywatts1459 หลายเดือนก่อน

      I have thoracic stenosis with a benign tumour attached to the cord. 3 slipped disks and 4 more with spondylosis . I’m Canadian and yes my doc prescribes me ZERO! Anything because of the ones that abuse opioids and the abusers have ruined it for a lot of legitimate pain sufferers. I have right knee infusion and right shoulder has all 3 of my main ligaments with complete calcification. Pain in my middle name. The quality of life is badly compromised. I feel my doctor has no compassion

  • @nikkiejones4606
    @nikkiejones4606 ปีที่แล้ว +25

    I also live in unbearable chronic pain 24/7 the pain is far to intense for me to cope with most of the time reducing me to crying and beside myself. I take lots of medications yet still I'm in excruciating pain over every inch of my body. I have uncontrollable spasms and nerve pain that runs up and down my arms and legs. It feels like my veins are on fire! The spasms can happen anywhere in my body, like I can feel like I'm being stabbed where ever it wants to stab me! I can't carry on with this hideous pain that's far to intense for me to cope with. I used to be a very active person. I ran every day and worked out. But now I can hardly move without pain, unbearable pain. I can relate to this documentary so much! I am thankful I have my faith and know Jesus is watching over me.

    • @enterthebruce91
      @enterthebruce91 ปีที่แล้ว +5

      God bless you. Jesus Christ is still Lord in spite of our pains (I have level 1 Cerebral Palsy and wonder the older I get whether I'll lose my abilily to walk and if that ever happens I honestly wouldn't want to live and in all honestly the majority of the time I don't want to live even now (I'm 32 and dread to think where I'll be in 10 years or so). I might not be here at all to be honest. Please stay as strong as you can for as long as you can. Jesus is the way, the truth and the life and the only way to the Father (John 14:6 KJV)-Every blessing from the UK,
      Sean

    • @KiwikimNZ
      @KiwikimNZ 8 หลายเดือนก่อน +3

      I'm so sorry you are living this way. I understand, I was also a fit, healthy, bubbly, hardworking person and the life tipped upside down after an breaking multiple vertebrae, I've had multiple surgeries that failed and I suffer from 24/7 pain also, muscular, nerve pain, joint pain and other things. It's a very lonely experience, no one understands, you become a prisoner in your own body and you would give anything to escape it for just an hour someday. You loose your purpose, your friends, life is spent trying to survive another day. Until you experience e chronic disabilites/disease you have no idea how tough it is, it changes you as a person, you feel useless. I'm so sorry, it's sad when I see that others are going through what you are going through and I truly hope you can one day have an improvement in you health and wellbeing. It becomes a mind game in the end and acceptance does help, but I know that is a hard place to get too. Good luck xx . Thinking of you.

    • @kavitadeva
      @kavitadeva 8 หลายเดือนก่อน +2

      Nikki do you know what is your diagnosis? There may be none I get that. I am Chronically Ill, bed-bound in agony. Nikki this is a sincere question as a Believer myself. If you can't take it, what keeps you from getting Dr assisted dying? How is the Lord giving you a reason to continue on? I hope you get this.

    • @gracekitchener1694
      @gracekitchener1694 8 หลายเดือนก่อน

      ​@@enterthebruce911:23:51 stay strong

    • @yvonnekneeshaw2784
      @yvonnekneeshaw2784 3 หลายเดือนก่อน

      Me TOO! My faith in Jesus gives me purpose & fulfillment. I also taking ACT right now…helps. 🇨🇦 ❤

  • @dare2bdifferent1
    @dare2bdifferent1 6 หลายเดือนก่อน +6

    My heart goes out to the chronic illness and chronic pain warriors who are struggling to cope on a daily basis. Not being able to have control over your body and mind is a terrifying experience. I pray for strength and healing for all those who are suffering, and their loved ones as well. 🌹

  • @maryhelen1011
    @maryhelen1011 ปีที่แล้ว +20

    Wonderfully uplifting and heartbreaking. I've suffered chronic pain from lupus. I've also been through a double mastectomy for breast cancer and I lost my left lower leg a year ago from an infected sore. Phantom pain is the worse for me. It makes us stronger in a sense, but the episodes of pain are unbelievably hard. Love and hope and peace to these three and any other suffering from a chronic disease. One of the things usually taken for granted in life is health, until it isn't. ❤

  • @eviefittell2937
    @eviefittell2937 หลายเดือนก่อน +2

    This documentary and this subject deserves so much more public attention. So many people are suffering. And the government and the ignorant doctors are completely letting so many of these poor people down. It's a complete disgrace and a total indictment on all the arrogant and ignorant doctors who put these poor people through hell. They shouldn't have to prove over and over again that they are suffering, just because doctors can't always find a clear diagnosis. The way doctors treat these people makes me sick.

  • @chewygal69
    @chewygal69 7 หลายเดือนก่อน +6

    This movie really moved me because I am on disability for chronic pain and fatigue.

  • @Boxerluver
    @Boxerluver ปีที่แล้ว +17

    Leo and his family are amazing! I cannot imagine the difficulty they deal with on a daily basis yet they have such a great outlook. They are strong and close family.

    • @Robin-lh9wr
      @Robin-lh9wr ปีที่แล้ว +3

      It was great to see the progress Leo made ❤️

  • @elodieleaf
    @elodieleaf ปีที่แล้ว +19

    Thankyou so much for this documentary 🙏🏼💗I live with ALS. It is so incredibly important to hear the stories of people who are ill. Sending love to all the people in this documentary ❤️

  • @sugarvp6
    @sugarvp6 ปีที่แล้ว +19

    This was so incredibly well done! I was looking for videos to help me feel less alone in my chronic illness and this definitely hit the mark! ❤

  • @silverkiss37
    @silverkiss37 ปีที่แล้ว +16

    I have chronic Lyme. I am 47 and got bit when I was 8... Never treated. Not even since they've found it. I am currently getting off the pain meds drs put me on before my diagnosis. Then I will be put on Low Dose Naltrexone. I have heard SO MANY success stories of people with Lyme and fibromyalgia (which I also "have") and Hashimotos (which I also have). I refuse to let this disease consume my whole life. The pain in my body would be unbearable most days if I didn't have Jesus. Some days it still is. To keep moving is a must. I finally just got out of a house with tons of mold and I live in Washington so mold? I'm not going to get away from it. I know about those headaches she's talking about. I have them almost all the time. It would be nice if doctors out there had even a clue about Lyme. They don't. Only Naturopaths do and they only know a little. And if you're not rich? Well then I'm sorry cos you're really unfortunate. I could never afford to throw my blankets away and get new ones or have a infared sauna. And supplements cost a fortune and aren't covered. So yeah... I am glad I have God cos I can get by that way instead and if I die young... It's all good.

    • @nancyjaynes2868
      @nancyjaynes2868 9 หลายเดือนก่อน +1

      @silverkiss37: if you have Hashimoto’s you most likely have a sensitivity to gluten and to dairy products; eliminating them may possibly improve how you feel…may take 3 weeks or so to see results. I speak from experience.

    • @racerx4152
      @racerx4152 หลายเดือนก่อน +1

      thank you for your faith in God (jesus). it encourages other christians.

  • @jimbim4405
    @jimbim4405 ปีที่แล้ว +9

    I just can't watch this. As an ex BBC-trained documentary maker myself, I am drawn to these types of programme. As a sufferer of Ankylosing Spondylitis, seeing how bad this will become is just too much to handle. Many thanks to the medical crews around the world who are trying to deal with this. I wish any sufferers well, strength and a positive outlook!

  • @tanyahart2396
    @tanyahart2396 2 ปีที่แล้ว +15

    Their strength is so admirable. They made me see life in a totally different. Thanks for the documentary.

  • @yvonnekneeshaw2784
    @yvonnekneeshaw2784 3 หลายเดือนก่อน +2

    Figuring out how to present to the Dr’s is a huge deal. Giving is SO IMPORTANT it just looks different than it used to be. I take ACT and my faith in Jesus and great support system help me. 🇨🇦 ❤

  • @emmaputt2183
    @emmaputt2183 6 หลายเดือนก่อน +3

    I have several Chronic illnesses and disabilities . Thank you so much for doing this

  • @NoNopeAndNo
    @NoNopeAndNo 2 ปีที่แล้ว +17

    Great video. Hate to see people hurting. Glad they have some support

  • @shoshannafachima1306
    @shoshannafachima1306 2 ปีที่แล้ว +11

    Thank you so very much for this extraordinary documentary
    I live with chronic severe pain and neuromuscular disease and fully understand what these people deal with bo the physically and emotionally.it is wonderful that their families are supportive and understanding.
    Again,thank you for sharing and God bless🙏❤🙏

    • @yougotaluvme
      @yougotaluvme ปีที่แล้ว +3

      Life shouldn't be so painful😔. God save us from the torment🙏🏿

    • @jimbim4405
      @jimbim4405 ปีที่แล้ว

      @@yougotaluvme Why would god save you from this? Was it not him/her who gave it to you in the first place?

    • @yougotaluvme
      @yougotaluvme ปีที่แล้ว

      @@jimbim4405 Sorry, God doesn't torment or torture people. I used to think that until I got a better understanding.

    • @jimbim4405
      @jimbim4405 ปีที่แล้ว

      @@yougotaluvme I am honestly NOT looking for an argument, however your logic TOTALLY defeats me. If you think that god could or would save you - and is actually able to - then why did he give it to you in the first place? Relying on false hope when you're suffering from a chronic degenerative disease (I am an Ankylosing Spondie sufferer (badly) myself) is simply crazy, IMHO!! The ONLY things you can do and hope for are a strong and positive outlook, and trying to keep your friends and family as close to you as possible. The medical establishment is studying this in increasing amounts (most of these ailments have only relatively-recently been identified and diagnosed) and I am pretty sure that in the world of science an d research god does not pop his head in too regularly. Keep your feet FIRMLY on the ground - and then maybe we'll "SliceThatLikeButton!! Cheers and good luck.

    • @carabiner7999
      @carabiner7999 ปีที่แล้ว

      @@jimbim4405 Fellow sufferer of a collection of chronic illnesses and debilitating pain here. For what it's worth, it has been shown that having some sort of faith/spiritual outlook *can* be beneficial in physical ways, much like having a pet, supportive network, etc. So, s/he cleaves to faith and hope? That is far better than hugging anger and bitterness.
      You should and DO know there is NO logic in faith; it is the mystery of the Divine beyond our mere mortal comprehension. So, being dismissive of what works for her is rather rude and patronising.
      Frankly, whatever we do to get us through the week, day, hour, minute or whatever and doesn't hurt others is legit to me. That said, my heart to you, lovie. Best wishes, and cheers.

  • @karencarney7595
    @karencarney7595 3 หลายเดือนก่อน +2

    As someone w Ehlers Danlos Syndrome, a rare genetic progressive illness that cuases us to breal & sublux joints, severe chrons ans bowel problems, dysautonomia & over 50 symptoms including chronic insomnia, hypersensitivity to foods and chemicals..i live in NJ where medicaid only covers below the standard of care. It is sickening how little resources there are. I became a Reiki mastee. A holistic health ans nutrition coach while learning the power of internittent fasting , keto diet & strength training w red light therapy can reduce symptoms 50% or more.
    We can heal.

  • @Sushi2735
    @Sushi2735 3 หลายเดือนก่อน +1

    Oh my goodness! Just horrid! Leo and his beautiful family!! And precious Sophia, tears your heart out.and darling Clarice. My God my heart breaks for this lives that are simply ripped apart by illness. We don’t know what lies ahead in ours lives. I had bad Cancer 18 yrs ago. Now I’ve found out the chemo that saved my life has destroyed my heart. Congestive heart Failure. We must continue to press on and find love and joy where we can 🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼

  • @calliopivogiatzis2235
    @calliopivogiatzis2235 8 หลายเดือนก่อน +2

    I remember watching documentaries like this in the 1970s. I think it's important to document a loved one's progression of their condition to bring awareness to others

  • @GrandmaBev64
    @GrandmaBev64 2 ปีที่แล้ว +9

    I woke up on April 6, 2013, with severe leg cramps and I never walked again. I wasn't even given a chance!! No physical therapy or Anything! Six years in, I Finally got physical therapy approved. Of course, by then, I kept pulling muscles and injuring myself. Why couldn't I get it when it mattered? When I had strength? I don't get it! Now, they took my pain meds away and I've turned to heroin. I'm Lost!

    • @GrandmaBev64
      @GrandmaBev64 2 ปีที่แล้ว +3

      @@wheniamhome Thank You. Arizona has started giving people back their meds. Hopefully, other States will follow. Actually, I'm doing a lot better, physically and mentally, with the H. The buffer in the pills was Killing my bowels. It was like passing cement. I'm scared to death to run out though. Hasn't happened yet, but, I know there is going to be a time I won't be able to get any. I'd like methadone and to be able to control my own pain management. I Know My Body. We deserve better than to be just hung out to dry and suffering.

    • @963ag
      @963ag ปีที่แล้ว +3

      Are you able to ask your primary care doctor to send you to pain management? They would be able to find the exact right painreliever for you... Also, there should be methadone / suboxine maintenance centers in your area to help you with the heroin. For those on disability, Medicaid/Medicare covers prescriptions - street drugs you have to pay for yourself! I am not judging, I was married to an addict and have issues with pain myself - spinal stenosis, herniated discs, degenerative disc disease, endometriosis.

    • @kavitadeva
      @kavitadeva 8 หลายเดือนก่อน +1

      ​@@963aghi I KNOW you mean well. However it isn't so black and white. I have been to six pain management Drs.They all acused me of being a drug seeker. What the ef does that mean? It's not how you described it. Like they will find exactly what works. NO!!

  • @fredbiscuit...413
    @fredbiscuit...413 ปีที่แล้ว +6

    Hello from London, UK. That was a brilliant - and first-class - documentary... Thank you so much for sharing it... :) x

  • @supernova44
    @supernova44 ปีที่แล้ว +12

    Very touching documentary. We need more of them living in a Tik Tok laden superficial world consumed by likes and and appearances. Been living with chronic spine pain despite surgeries, RA, fibro, and HS which is an autoimmune skin disease that is disfiguring and very painful. Just had surgery to remove deep abscesses and scarring all across my stomach skinfold but it will come back. I also have it in both groin, genitals, buttocks, and breast. Surgery is for when it gets very severe and there is no cure. Pain management allows me not to be bedridden.

  • @rainylaviana4659
    @rainylaviana4659 2 ปีที่แล้ว +11

    God bless you ♌ Leo and your family your story touched me keep thriving keep reaching for the stars

  • @isabellegarcia9205
    @isabellegarcia9205 9 หลายเดือนก่อน +3

    I have reamatoud arthritis since i was in my 20, pain all over, got worst with age, im 56 now, took humira, injections,prednison, whats working for me now is rinvoc, has acary aide effects on bottle, but if i dont take this pill, ill be like an old 80 year old lady, may god bless you all.🙏🏼

  • @jennyverreault7552
    @jennyverreault7552 2 ปีที่แล้ว +11

    Wow such a powerful documentary. Made me cry and think of life totally differently. Thank you so much ☺️. P.S. please do a documentary about mental health also

  • @Turkeyinthehay
    @Turkeyinthehay ปีที่แล้ว +4

    Such great stories of the power we all have to refuse to be defeated without a fight! I hope everyone featured here lives a full and completely blessed life!

    • @kavitadeva
      @kavitadeva 8 หลายเดือนก่อน

      You hope everyone here lives a full and Completely blessed life. I am sorry, but why would you say that? It's comments like yours that makes sufferers like me feel completely un heard and unseen.

    • @Turkeyinthehay
      @Turkeyinthehay 8 หลายเดือนก่อน

      @@kavitadeva Um...I can say that because I have a genuine wish that those featured here have a full and completely blessed life. Not sure what puzzles you. I don't have the power to give anyone that life, but I can hope the best for people. Welcome to public forums where people are allowed to make comments, whether you find them good enough, genuine or valid. Good of you to assume that I myself don't sufferr from anything. Maybe learn to state things in a more enlightening way rather than attacking people.

    • @kavitadeva
      @kavitadeva 8 หลายเดือนก่อน

      @@Turkeyinthehay you mean as You're Attacking me? You certainly had alot to say about my intentions and how I Should say things. I actually would like to have a dialog with you regarding my reply to your comment. The only problem is when you get Defensive like you have shown here with your response to my reply to you, I have learned that people like you are unable to have curiosity
      and strive for self awareness.

    • @Turkeyinthehay
      @Turkeyinthehay 8 หลายเดือนก่อน

      @@kavitadeva I did not attack you. I responded to you. Again, welcome to public forums. This now ends our discussion.

    • @kavitadeva
      @kavitadeva 8 หลายเดือนก่อน

      @@Turkeyinthehay you are one mental case. You keep accusing me of what you are doing. It's called PROJECTION. It's an open forum. But you keep blaming. NOW discussion Over.

  • @KiwikimNZ
    @KiwikimNZ 8 หลายเดือนก่อน +3

    So proud of these beautiful people. It's easy to give up when going through something like this. Hugs❤

  • @shinekarlsson6948
    @shinekarlsson6948 2 ปีที่แล้ว +10

    Wow and thank you for this. A very touching, sad and happy documentary. It all comes down to support and awareness.

  • @jenwhitehead4092
    @jenwhitehead4092 7 หลายเดือนก่อน +2

    How awful. What a terrible pain to go through. 😢

  • @pennyc11
    @pennyc11 5 หลายเดือนก่อน +2

    Doctors need to hook up with therapists. Patients do not know how to manage life after finding out you now have a chronic illness that will leave you disabled for life.
    I had three children to support. Divorced and feeling so lost. Trying this and that. Taking the long way around in life because I didn't know how to maneuver well as a disabled person, let alone parent.😢

  • @carrieh2409
    @carrieh2409 2 ปีที่แล้ว +10

    thank you for putting this incredible documentary on youtube!

  • @visionvixxen
    @visionvixxen 6 หลายเดือนก่อน +3

    I wish they knew what was happening w Leo.
    A lot of his movements remind me of Huntingtona

  • @Christinesobsevations
    @Christinesobsevations 7 หลายเดือนก่อน +3

    How can ones belly tolerate this all ❤❤❤

  • @roxanneherrman2107
    @roxanneherrman2107 5 หลายเดือนก่อน +1

    It's so sad your Dad had to suffer for so long, and that surgery is giving him a great chance to fight back! God bless you , your Dad and family

  • @logicrealitytruth
    @logicrealitytruth 7 หลายเดือนก่อน +4

    The 1-10 pain scale doesn’t work for me either. 25 sounds more accurate. 👍🏽

  • @bekkatheman
    @bekkatheman 7 หลายเดือนก่อน +2

    I have a similar 'brain pacemaker" called a Vagus Nerve Stimulator. I have it for my seizures. It sends pulses via my vagus nerve to my brain to control my seizures.

  • @jimlawson9580
    @jimlawson9580 2 ปีที่แล้ว +6

    Thank you so much for sharing this!

  • @expectingthebeach2368
    @expectingthebeach2368 9 หลายเดือนก่อน +2

    thank you 💗💗

  • @Medietos
    @Medietos 9 หลายเดือนก่อน +2

    About A.S. it's not supposed to be deadly, I feel annoyed taking resources to watch (computer not being good for my disease...) and would like to get good, full info to understand.They all have better than mew in their social lives and psychical state. Maybe I shouldn't watch this in case I get depressed at seeing the contrast to how bad I have it and what I have been exposed to ( mistreatment andtheft, withheld healthcare and social life.)
    Wow, to have a boyfriend a dog and an outdoor space!
    What kind of IR sauna does Sofia use, NIR or FIR ?
    How good thatt she gives ashes and blessings!
    Gosh, fantastic improvements of Leo's! So glad for him, and for her who went on desert therapy. I wish I had support like they do. About Charis who got disability in the end; - what did she live on before??
    How does one find and get in touch with.. health advocates? I have got so much worse from getting abuse, deception and denial and aLoneliness instead of fairness, openness, honesty and adequate examination, Personal Assistance, body-psychotherapy and physical treatment.

  • @LeeSeneca
    @LeeSeneca 7 หลายเดือนก่อน +1

    Obama Care came in and my two Grandsons have more difficulty getting the testing and treatment needed. It wasn't like that before. One Grandson has Spina Bifida and the other has Neurofibromatosis type 1.

    • @annedodgson8677
      @annedodgson8677 5 หลายเดือนก่อน

      That’s socialized medicine…

  • @robinsnest68
    @robinsnest68 ปีที่แล้ว +7

    How can she put the stuff up to her face, take a deep whiff and NOT EXPECT to react? I'm not getting that one...

    • @sarahtiferet9025
      @sarahtiferet9025 วันที่ผ่านมา

      LOL! You must be Trolling for attention with that ignorant comment . I'm sure she would use another way if she could , But you know that don't you? Well you're welcome for the attention ! poor pathetic Troll

  • @veevintage2619
    @veevintage2619 7 หลายเดือนก่อน +2

    The next time I complain about cellulite, a period cramp, a new grey hair, a bit of flab here and there or a small ache due to whiplash... I will remember these three, and stop whining.

  • @Gina-dn6xm
    @Gina-dn6xm หลายเดือนก่อน +1

    I was diagnosed with lyme 2 years after symptoms. I have been on 29 to 30 antibiotics, numerous supplements and other medications. I have since the been diagnosed with ME/CFS. There is no cure for lyme that has been found late.

  • @tristanmason7405
    @tristanmason7405 ปีที่แล้ว +4

    Leo getting up to take a walk was the best part of the video! He had US ALL fooled 😆🤣😂

  • @shashankp891
    @shashankp891 17 วันที่ผ่านมา

    Im from India the health care system here dosent even know chronic pain exist its so hard fighting thiss disease when we are in 3world countrys its even worse hope one day our health care system an our people build such attitude to fight against pain an help an understand each other.

  • @kathleenodonnell7800
    @kathleenodonnell7800 10 หลายเดือนก่อน +2

    Nothing wrong with taking classes online if it gets the job done!

  • @dotsyjmaher
    @dotsyjmaher ปีที่แล้ว +1

    Wow....

  • @soniachambers6460
    @soniachambers6460 7 หลายเดือนก่อน +1

    I have marfan syndrome. I have had all the symptoms of AS for years , yet with no change in my bones on xray.

  • @Robin-lh9wr
    @Robin-lh9wr ปีที่แล้ว +3

    It would seem so much of the population is severely unwell. What is wrong?

    • @eileenwatt8283
      @eileenwatt8283 ปีที่แล้ว +1

      I asked the same thing too. I know young people in their 20s and 30 with breast cancer.

    • @Robin-lh9wr
      @Robin-lh9wr ปีที่แล้ว +1

      @@eileenwatt8283 Yes, also many autoimmune disorders, autism (mostly males), so many things! 🤨

    • @ey67
      @ey67 3 หลายเดือนก่อน

      Everything is wrong. Predatory capitalism turned people into commodities not humans. The Almighty dollar.

    • @user-pv4vq8ni4q
      @user-pv4vq8ni4q 2 หลายเดือนก่อน

      It's all in the food .u never heard of cancer in young people

  • @hurryslow1
    @hurryslow1 ปีที่แล้ว +3

    These sweet brave souls really break my heart, as well as some of those in the comments.
    Healthcare globally is steadily declining into a shocking and pitiful state.
    A support network is critical.
    I live on my own, struggling with a genetic liver disorder that already killed two generations before me, some autoimmune issues that cause chronic inflammation as well as a rare genetic form of hemochromatosis.
    Any of these will eventually kill me.
    My life has declined to a pathetic level of existence compared to what it used to be.
    I have to carefully consider what I eat or not, and I rely on +-25 different herbs, tinctures and supplements to try and maintain optimum health.
    My family is aware of my condition(s) but do not grasp the extent of my daily struggle or the toll on my emotional well being. My children are engrossed in their own lives.
    Most of the time I just wish I could just die quickly as life makes no sense anymore.
    I wish I could live at the beach and just sit there every day for some peace and calm until I die.

    • @Crrly
      @Crrly 9 หลายเดือนก่อน

      ❤❤❤

  • @ldd7781
    @ldd7781 10 หลายเดือนก่อน +2

    The reason why they don't test is cause they get paid if they do or don't and do not care

  • @barbaranicholls666
    @barbaranicholls666 5 หลายเดือนก่อน

    Have you tried The natural Herb Mugwort and CBD, this must be exhausting, I hope you get through this Stronger and Healthy. Best of Luck.

  • @dotsyjmaher
    @dotsyjmaher ปีที่แล้ว +4

    Everytime I see tattoos over large areas..I really wonder what that junk does to the health...
    Leo's wife is SO sweet..poor darling she really broke my heart...thank God he has her...

    • @eileenwatt8283
      @eileenwatt8283 ปีที่แล้ว

      I was thinking the same thing too.
      It has lead in the paint and it's in the bible not to tattoo or cut one's body. Tattoo parlor are unregulated. Possibility of infection exposure is real.

  • @annberlin5811
    @annberlin5811 7 หลายเดือนก่อน

    I had black mold in an apt. Its a weird smell

  • @beago0810
    @beago0810 9 หลายเดือนก่อน +1

    i wonder what her CPK levels were...the one who went to the Rheumatologist. My CPK was as high as 3,500. The doctor thought with my CPK numbers I would be in a wheel chair. The normal level CPK is no higher than 150. I never got a clear diagnosis from any doctors over 20 years... just a whole lot of tests. My muscle weakness hurt so bad all over. I handled my condition with "mind over matter." I refused to go on disability. I kept telling myself i dont time to be sick...i have too much to do. I went in to become a Volunteer Firefighter and trained with the State of New York.

  • @janeh5949
    @janeh5949 6 หลายเดือนก่อน +1

    Nikkiejones, I plead the blood of Jesus over you

  • @annedodgson8677
    @annedodgson8677 5 หลายเดือนก่อน

    Is tattoo ink toxic…red, blue, yellow food dyes are better avoided…

  • @YAHWEH_TSIDKENU
    @YAHWEH_TSIDKENU 4 หลายเดือนก่อน

    ❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤

  • @susankolenda1734
    @susankolenda1734 2 หลายเดือนก่อน +1

    I like the fact that Leo and his family give everything to the lord instead of putting the whole gay pride thing in there. People in this country need to put God first. I have MS and I get up everyday and go to work. I thought this was a story about disease not gay pride

  • @doveseye.4666
    @doveseye.4666 6 หลายเดือนก่อน +1

    I am sorry for all of this suffering and limiting but it can be put on a scale, don’t call this a 10, lets slide this over to severe, than lets move it further over to damage, little more to permanent damage, now a big push to permanent severe damage, now lets include reality, say being alone and the scale gets pushed further t 10, now lets move the scale more, severe permanent damage while being alone and being a caregiver, slide screeching screech, Ok lets move that scale now and lets get it all the way to 10, severe permanent damage while being a single caregiver to a disabled person who is carrying there own scale, almost most there, now you are severe permanent damage person caring for the same different familiar.
    I don’t have anywhere else to push this scale except push it over!

    • @aparnakuppachi4599
      @aparnakuppachi4599 5 หลายเดือนก่อน

      Feel for you. Wish for better days for you, soon

  • @supernova44
    @supernova44 ปีที่แล้ว +5

    The only thing that went away was the $600 penalty for not having Obamacare. She’s eligible for SSA benefits that includes Medicare and Medicaid which is better.

  • @Blackraregem
    @Blackraregem 5 หลายเดือนก่อน

    The most saddest thing is racism towards Black people

    • @doeeyes2
      @doeeyes2 2 หลายเดือนก่อน

      Wow

    • @e.williams13
      @e.williams13 17 วันที่ผ่านมา

      Omg please stop