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Chronic Love
United States
Приєднався 18 жов 2020
Essential discussions on living with and beyond chronic illness to make it easier for those who follow.
More About Our Discussions: At Chronic Love, in collaboration with our generous featured guests, we share candid discussions about living with and beyond chronic illness with the intention of showing the humanity, the wholeness of life impacted by chronic disease and chronic conditions. We hope that these conversations can offer a needed counterpoint to the often sterile portrayals of illness and treatment in the service of helping those living with illness to feel less alone; to offer supportive others a lens through which they may more sensitively meet the needs of their fellow humans with illness; and to raise awareness, curiosity, critical thought, and contemplations of change as we lean into issues that impose further hardship on humans living with illness.
To stay tuned and show us love while supporting our effort, subscribe to our channel! We appreciate you!
More About Our Discussions: At Chronic Love, in collaboration with our generous featured guests, we share candid discussions about living with and beyond chronic illness with the intention of showing the humanity, the wholeness of life impacted by chronic disease and chronic conditions. We hope that these conversations can offer a needed counterpoint to the often sterile portrayals of illness and treatment in the service of helping those living with illness to feel less alone; to offer supportive others a lens through which they may more sensitively meet the needs of their fellow humans with illness; and to raise awareness, curiosity, critical thought, and contemplations of change as we lean into issues that impose further hardship on humans living with illness.
To stay tuned and show us love while supporting our effort, subscribe to our channel! We appreciate you!
Overcoming Guillain-Barré syndrome | From paralysis to climbing mountains | Holly's GBS recovery
Holly details the process of her recovery from sudden paralysis due to Guillain-Barré syndrome (GBS). Join us as Holly inspires hope and reminds us all of the power we can find when we focus on one challenge at a time, when we celebrate each and every win on our path forward.
To stay tuned and show us love while supporting our effort, subscribe to our channel at www.youtube.com/@chroniclove?sub_confirmation=1 We appreciate you!
About Our Discussions: At Chronic Love, in collaboration with our generous featured guests, we share candid discussions about living with and beyond chronic illness with the intention of showing the humanity, the wholeness of life impacted by chronic disease and chronic conditions. We hope that these conversations can offer a needed counterpoint to the often sterile portrayals of illness and treatment in the service of helping those living with illness to feel less alone; to offer supportive others a lens through which they may more sensitively meet the needs of their fellow humans with illness; and to raise awareness, curiosity, critical thought, and contemplations of change as we lean into issues that impose further hardship on humans living with illness.
We welcome you to connect with us:
Website: www.chroniclove.org
Facebook: groups/chroniclovegroup/
Instagram: chroniclovenyc
Twitter: @chronicloveorg
TikTok: @chronicloveorg
Holly's UA-cam: @hollyaftergbs
UA-cam: Stay tuned @ www.youtube.com/@chroniclove?sub_confirmation=1
Apple Music Podcast: podcasts.apple.com/us/podcast/chronic-love-discussions/id1587998457
Spotify Podcast: open.spotify.com/show/6sZJOOH6pXyVGpwY3YWlaw?si=07EuRTj9QI-3S5vltIepog&nd=1
DISCLAIMER: Chronic Love, Inc. content relates to wellness topics with a particular focus on living with and thriving through chronic illnesses. By listening to our content, you acknowledge and agree that the following warnings and disclaimers apply to all of our content, and that you are listening to the content voluntarily and at your own risk. Chronic Love, Inc., Robin Herbst-Paparne, Psy.D. (hereinafter collectively, “Chronic Love”), and any other individual who may participate in the production or distribution of Chronic Love content do not hold themselves out to be your medical or mental health care provider. Our content is provided for informational and educational purposes only and is not to be perceived or relied upon as medical or mental health care advice, diagnosis or treatment. Always seek the advice of your qualified medical and/or mental health care provider with any questions you may have regarding a medical and/or mental health condition. In case of an emergency, call 911.
Chronic Love is not liable for any advice or information provided in our content by Robin Herbst-Paparne, Psy.D. or any other participant, all of which is provided on an “as-is” basis, without any expressed or implied warranties. All participants are voluntarily sharing their experiences with chronic illness with full knowledge that these recordings are to be used for this public content, and their opinions and statements are theirs alone. Guest participants are not clients of Robin Herbst-Paparne, Psy.D. Chronic Love does not endorse any specific care providers, treatments or other information discussed in our content. By viewing our content, you agree to indemnify and hold harmless any individual involved with the production or publication of Chronic Love content in any way for any and all losses, injuries, and damages resulting from any and all claims related to your use or misuse of the content. While Chronic Love is intended as a safe and supportive space, some of the topics discussed may be explicit or otherwise “triggering.”
#gbsawareness #gbsrecovery #rarediseases #guillainbarresyndrome #adaptiveparenting #motherhood #paralyzed #paralyzedmom #paralyzedmother #guillainbarre #Guillainbarresyndromestory #Guillainbarresyndromesymptoms #Guillainbarresyndromerecovery #gbssyndrome #gbsparalysis #Guillainbarrepatient #GBS #GBSsurvivor #gbssupport #Guillainbarresurvivor #gbswarrior #GBScommunity #paralysis #Guillainbarreparalysis #disabilityawareness #vlog #autoimmunedisease #autoimmunediseases #neurologicaldisorder #neurologicaldisorders #ventilator #ICU #chronicillness #HollyFrances #RobinHerbstPaparne #chroniclove #chronicloveorg #chroniclovediscussions #personalstory #medicaljourney
To stay tuned and show us love while supporting our effort, subscribe to our channel at www.youtube.com/@chroniclove?sub_confirmation=1 We appreciate you!
About Our Discussions: At Chronic Love, in collaboration with our generous featured guests, we share candid discussions about living with and beyond chronic illness with the intention of showing the humanity, the wholeness of life impacted by chronic disease and chronic conditions. We hope that these conversations can offer a needed counterpoint to the often sterile portrayals of illness and treatment in the service of helping those living with illness to feel less alone; to offer supportive others a lens through which they may more sensitively meet the needs of their fellow humans with illness; and to raise awareness, curiosity, critical thought, and contemplations of change as we lean into issues that impose further hardship on humans living with illness.
We welcome you to connect with us:
Website: www.chroniclove.org
Facebook: groups/chroniclovegroup/
Instagram: chroniclovenyc
Twitter: @chronicloveorg
TikTok: @chronicloveorg
Holly's UA-cam: @hollyaftergbs
UA-cam: Stay tuned @ www.youtube.com/@chroniclove?sub_confirmation=1
Apple Music Podcast: podcasts.apple.com/us/podcast/chronic-love-discussions/id1587998457
Spotify Podcast: open.spotify.com/show/6sZJOOH6pXyVGpwY3YWlaw?si=07EuRTj9QI-3S5vltIepog&nd=1
DISCLAIMER: Chronic Love, Inc. content relates to wellness topics with a particular focus on living with and thriving through chronic illnesses. By listening to our content, you acknowledge and agree that the following warnings and disclaimers apply to all of our content, and that you are listening to the content voluntarily and at your own risk. Chronic Love, Inc., Robin Herbst-Paparne, Psy.D. (hereinafter collectively, “Chronic Love”), and any other individual who may participate in the production or distribution of Chronic Love content do not hold themselves out to be your medical or mental health care provider. Our content is provided for informational and educational purposes only and is not to be perceived or relied upon as medical or mental health care advice, diagnosis or treatment. Always seek the advice of your qualified medical and/or mental health care provider with any questions you may have regarding a medical and/or mental health condition. In case of an emergency, call 911.
Chronic Love is not liable for any advice or information provided in our content by Robin Herbst-Paparne, Psy.D. or any other participant, all of which is provided on an “as-is” basis, without any expressed or implied warranties. All participants are voluntarily sharing their experiences with chronic illness with full knowledge that these recordings are to be used for this public content, and their opinions and statements are theirs alone. Guest participants are not clients of Robin Herbst-Paparne, Psy.D. Chronic Love does not endorse any specific care providers, treatments or other information discussed in our content. By viewing our content, you agree to indemnify and hold harmless any individual involved with the production or publication of Chronic Love content in any way for any and all losses, injuries, and damages resulting from any and all claims related to your use or misuse of the content. While Chronic Love is intended as a safe and supportive space, some of the topics discussed may be explicit or otherwise “triggering.”
#gbsawareness #gbsrecovery #rarediseases #guillainbarresyndrome #adaptiveparenting #motherhood #paralyzed #paralyzedmom #paralyzedmother #guillainbarre #Guillainbarresyndromestory #Guillainbarresyndromesymptoms #Guillainbarresyndromerecovery #gbssyndrome #gbsparalysis #Guillainbarrepatient #GBS #GBSsurvivor #gbssupport #Guillainbarresurvivor #gbswarrior #GBScommunity #paralysis #Guillainbarreparalysis #disabilityawareness #vlog #autoimmunedisease #autoimmunediseases #neurologicaldisorder #neurologicaldisorders #ventilator #ICU #chronicillness #HollyFrances #RobinHerbstPaparne #chroniclove #chronicloveorg #chroniclovediscussions #personalstory #medicaljourney
Переглядів: 851
Відео
Guillain-Barré syndrome, overcoming paralysis to bond with baby as a new mom | Holly's GBS story.
Переглядів 1,2 тис.Рік тому
Paralyzed by Guillain-Barré syndrome (GBS) as a new mom, Holly shares with us the heartbreak she felt when physical bonding with her baby would suddenly change as well as the beautiful ways she and her daughter were able to find paths to communicate and bond, despite her paralysis. To stay tuned and show us love while supporting our effort, subscribe to our channel at www.youtube.com/@chroniclo...
Surviving emotions of cancer | Advice to younger self from beyond a decade after Hodgkin lymphoma
Переглядів 759Рік тому
Justin shares advice he would offer his younger self on overcoming the most emotionally challenging moments of a cancer diagnosis and treatment, now more than ten years in remission from stage III Hodgkin lymphoma. In this episode, Justin offers powerful and insightful advice on connecting with the present moment, on the impermanence of emotions, and on what we can learn when we give space to t...
Dating, relationships, finding love during cancer treatment | Justin’s Hodgkin lymphoma story, ctd.
Переглядів 2 тис.2 роки тому
Dating, relationships, finding love during cancer treatment | Justin’s Hodgkin lymphoma story, ctd.
Paralyzed and on a ventilator to breathe, this is what it felt like | Holly’s GBS story.
Переглядів 2,5 тис.2 роки тому
Paralyzed and on a ventilator to breathe, this is what it felt like | Holly’s GBS story.
Newly sober, out, and ready to live when diagnosed with cancer | Justin shares more of his story
Переглядів 1,8 тис.2 роки тому
Newly sober, out, and ready to live when diagnosed with cancer | Justin shares more of his story
When your body turns on you | The misunderstood reality of cancer and treatment
Переглядів 1,7 тис.2 роки тому
When your body turns on you | The misunderstood reality of cancer and treatment
Guillain-Barré syndrome, from early symptoms to diagnosis and treatment | Holly's GBS story
Переглядів 26 тис.2 роки тому
Guillain-Barré syndrome, from early symptoms to diagnosis and treatment | Holly's GBS story
Hodgkin lymphoma, from symptoms to diagnosis | Justin shares the beginning of his cancer story.
Переглядів 27 тис.2 роки тому
Hodgkin lymphoma, from symptoms to diagnosis | Justin shares the beginning of his cancer story.
Quick tips for loved ones of cancer patients
Переглядів 1,9 тис.2 роки тому
Quick tips for loved ones of cancer patients
5 life-saving tips every patient needs to know | Advocating to overcome hurdles in healthcare
Переглядів 14 тис.3 роки тому
5 life-saving tips every patient needs to know | Advocating to overcome hurdles in healthcare
When illness forces our lives to change, our loved ones face change too
Переглядів 6 тис.3 роки тому
When illness forces our lives to change, our loved ones face change too
Jaymie discusses self-advocacy, driving 2 hours out of state to get the medical care she deserves
Переглядів 1,8 тис.3 роки тому
Jaymie discusses self-advocacy, driving 2 hours out of state to get the medical care she deserves
Jaymie shares on removing liters of fluid from her lungs while waiting for treatment to work
Переглядів 17 тис.3 роки тому
Jaymie shares on removing liters of fluid from her lungs while waiting for treatment to work
This is what it feels like | On the trauma of living with breast cancer
Переглядів 5523 роки тому
This is what it feels like | On the trauma of living with breast cancer
A short one on how we found our breast cancer tumors
Переглядів 1,6 тис.3 роки тому
A short one on how we found our breast cancer tumors
On choosing to "go flat" vs. reconstruction after double mastectomy: identity, well-being, survival
Переглядів 12 тис.3 роки тому
On choosing to "go flat" vs. reconstruction after double mastectomy: identity, well-being, survival
Tips to manage the overwhelm, guilt of support during illness
Переглядів 8433 роки тому
Tips to manage the overwhelm, guilt of support during illness
On delayed diagnosis & self-advocacy in cancer treatment | Jaymie's stage IV lung cancer story
Переглядів 1,9 тис.3 роки тому
On delayed diagnosis & self-advocacy in cancer treatment | Jaymie's stage IV lung cancer story
When supportive others got it right during our most difficult moments
Переглядів 3333 роки тому
When supportive others got it right during our most difficult moments
When a diagnosis put a time clock above her head, achieving dreams required adjusting expectations
Переглядів 1,3 тис.3 роки тому
When a diagnosis put a time clock above her head, achieving dreams required adjusting expectations
Stage IV lung cancer from symptoms to diagnosis | Jaymie shares the beginning of her cancer story.
Переглядів 890 тис.3 роки тому
Stage IV lung cancer from symptoms to diagnosis | Jaymie shares the beginning of her cancer story.
On cancer and food | Eva, Laura share on navigating complexities of diet and illness
Переглядів 8293 роки тому
On cancer and food | Eva, Laura share on navigating complexities of diet and illness
Managing the emotions of stage IV lung cancer | Jaymie's lung cancer story
Переглядів 1,3 тис.3 роки тому
Managing the emotions of stage IV lung cancer | Jaymie's lung cancer story
Don't ask a cancer patient about this! | Questions about work and finances can be tough
Переглядів 5993 роки тому
Don't ask a cancer patient about this! | Questions about work and finances can be tough
do you still have fluid on your lung
Hi. I'm live near Edinburgh, Scotland. I developed in June 2022. My symptoms started in both my calf muscles and spread up my legs, then hands/arms and rest of my body. Similarly to the lady in the video, I thought i had a pinched nerve at first. I've recovered but still have weird sensations my leg and haven't fully regained my strength, but I'll get there. Good luck to everyone going through this!
Brave lady you will WIN this battle 🙏❤️
my dad got it it lasted 3 years his legs were affected only
So sorry for u may the Lord bless u.My mom lived with treatment.
I totally been their but mine collapsed Icy 5 days tube left side.My lungs are full of tares in it. Understand how Drs differ.
Going through old emails,saw a notification re a comment i left. Really hope this lovely lady is still ok 🙏🏻🙏🏻🙏🏻🥰
She is! Her update will be coming soon 💛
@ thats great news ♥️
Beautiful story! Sending love!!
dont go to new doctors. "go to patient first" clinics like that . They will take care of you right away. Then send you to the ER.
I'm currently going through testing... but shocked to hear that a plant based diet was prescribed.
Her reaction is raw real!!
The minute the doctor says it must be the exercise. And you know it's not that.
The moderator is way too distracting.
👩🏽🦱 When Jaymie said the doctor told her that her left lung was full of fluid, I instantly felt said. The medicine seemed to work. Hopefully, medicine will obliterate all the cancer. 🙏🏽 Godspeed
U guys should know that GBS can take yrs. 20yrs ago i woke up paralyzed- my feet, legs, hips & had no way to get to the hospital. I was stuck in bed & that my husband who had built 2 steps so i could get i to our bed. I had to use my hands to climb done the steps & drag my body behind me. After getting to the floor i use my fore arms to drag myself to the bathroom. I used my hands & arms to climb up the toilet & sat. Same thing back.after 3 weeks i went to the ER & got a diagnosis of bakers cyst & sent home. That was 20yrs ago & w/in the past 3-4 yrs my arms went flaccid & the pain was horrendous. My hands have given out & i suddenly dropped pots of boiling liquid all over the cooktop, drawers & floor & am lucky i didnt burn the skin off my legs. Ive had times where i made it downstairs to the couch & my legs, feet, hips gave out. My husband tried to hold me up & i collapsed. He got me back on the couch & laid me out. Ive had problems where my legs,feet,hips, hands, arms gave out. Just the end of oct my neck gave out & i was n screaming pain, that lasted about 48hrs. But guess what? Ive been to a gbs neurologist who couldnt help me! Ive been to many neuros & no one knows whats wrong w/me! Even my own family dr. I guess im going to have to stop breathing since everything Else has given out.! By the way i was told by another dr that there is no pain connected to GBS! Really! Because the pain is the worst pain ive ever experienced including 48hrs of labor & emergency csection. Everyones GBS is different, so ive read. Id like to say always go to the ER because gbs can turn serious. Luckily mine didnt kill me, yet.
You gave me hope. My story is so much like yours. I'm 43. Never smoked. Never drank. Never did drugs. I started "coughing/wheezing" in April and was diagnosed in December with stage IV EGFR after the doctors too thought it was asthma. It really is bizarre to walk around with stage 4. We don't necessarily look sick and we see other cancer patients (especially those who obviously are getting chemotherapy) who probably wish they were in our shoes, but truth be told that we are worse off in the long run. I had Non-Hodgkins lymphoma back in 2003. I never got to know the staging but my doctor said at the time that it was aggressive and did I now receive treatment immediately that I'd be dead within a year. The doctors now believe that the lung cancer is due to the radiation I received back then. I have not once after the 5 year remission date been asked or checked up upon despite that the medical professionals KNOW that there are long term consequences of their treatments. That's what infuriates me most. Some days I live a normal life, and somehow forget that I have stage IV lung cancer. But the future is still very uncertain. Thank you for this video.
Very true ❤
I have had constant pneumonia they found fuzzy spots on my lungs at the hospital today on X-ray and ct scan I need to go back for another ct scan. I absolutely adore Jaymie she so well spoken positive optimistic God bless you
Thank you for your story bless you and I hope you are doing well ❤ love always
Black mold causes wheezing then turns to cancer...parasites are from stacchiboccus mold which is a form of black mold that turns to cancer
Hi Robyn, could you please tell me what part of your book hurt? Thank you
Absolutely love these tips! She's awesome!
🙏🏽🙏🏽 you're not sounding privileged. You're blessed & I'm happy for you. Wishing You many more years 💙
The 12th of this month my family lost our 23 year old cousin whom was diagnosed in 2022 with a rare lung cancer stage 4, a few months ago it spread to his brain and spine. We lost a beautiful soul, his name "Tylee Craft", graduate and wide receiver for the UNC Tarheels. #Tyleestrong #13 #keepswinging
She is absolutely amazing xx
My dad has gbs. We are trying to read his lip but are unable to. We can catch a few words. We have flash cards and an abc chart to make words on a white board. I just wonder what worked best for any of you? He has total paralysis and a trac tube
Sending ❤
God bless you all..how brave you are Your story is so humbling..my brother going through a big deal of challenges right now…but God is great 🙏💔
🙏🏼🥰
I don’t smoke if rather eat weed then smoking it because it last longer
Thank you for sharing Jaymie. What is the name of the medication the four pills that you took twice a day? Also did you get radiation or immunology treatment?
Kudos. Insightful experience.
People think if you have stage 4 cancer, you must be unable to do anything. But that’s not true at all. I was teaching until I basically passed out after school one day. Three weeks later I started a strong chemo treatment for stage 3/4 large diffused B cell lymphoma. You can be that sick and still be functioning cause us woman are strong beings!
God bless her! Praying for healing in her body!
Thank you for sharing God Bless you
I’m having this procedure done tomorrow. Doctors seem to minimize the surgery and the affect the catheter will have on me. I have late stage breast cancer. Getting this fluid drained is really uncomfortable. I hope the catheter will bring me some relief.
Your story is so similar. Everyone kept saying it’s migraines and heartburn. Medical professionals rolling their eyes at me and wanting to end the conversation. Went for an X-ray 2 days ago.. they found a mass in my lungs. The dr said it’s a clot at first. I haven’t told anyone how bad it is, and it is just a clot that needs to be treated. How do you tell people without making things worse? I’m already getting life advice and lectures from every single friend. I am their emotional support and comfort right now. They’re not ready to hear I have cancer. Sending you all love.
How is Jaymei doing now?
Ty for checking in. Jaymie is thriving. Feel free to check out her channel, @wjmsmedia for more.
@@chroniclove Yeah but it's been MONTHS since she's updated her channel and we need to know what's going on and that she's ok!
Jaymie is, in fact, ok. If you don’t see updates, it’s because she’s enjoying life 💛
God bless you and may you live long life?
Another thing to add, is that if you are a woman over 50, doctors will love to blame your symptoms on menopause, or tell you that you are having typical aches and pains that come with aging. You have push HARD for diagnostic tests. Don't leave the office until they give you a referral. Something else that really helps, is to always bring someone with you to every appointment. Doctors can try to BS one person, but it makes it a lot harder to BS two people. There is a witness as to how you are treated.
If you smoke pot lung cancer is likely. You hold it in longer. Much worse than normal cigarette smoking. So many I grew up with who smoked pot every day in the 80s-2000 Are now getting lung cancer.
I have made my decision it was tough but it makes life simpler for me
Okay so this comment section is so amazing. I mean so much inspiration. I am dying from health anxiety thinking I have symptoms which I know probably aren’t even cancer symptoms! And here people are living for over 40 years with multiple advanced stage cancers! Truly! I really should stop worrying and thank god for all his blessings and live my life! ❤ Also my prayers and well wishes to every single person fighting this everyday! Really, I need to learn more about mental strength from you guys!!❤
That’s what cough I’ve got.
Loved the video...brave Lovely woman - god bless ...from the 🇬🇧
CT Scans show the lungs and is the gold standard for diagnosing the lung structures.. She had pleural effusion at X-Ray that led to her hospitalization. Young athletic women are increasingly getting ALC Positive Lung Cancer with genetic deletions and insertions. EXXON-19 and 20 are the two I have some knowledge about. Thank you for whating your story, Jaymie.
I just prayed for you!
Is atelectasis a sign if lung cancer?
That's sad! I was a heavy fan smoker most of my life. I don't have cancer. Smoking is dumb I do it as a coping mechanism PTSD I loss a lot of people in this lifetime. I know that's still a bull💩 excuse
This is 2 years later - how is she doing?
Hi, Robin here! Ty so much for your care to check in on Jaymie. Jaymie has been stable. If you’d like to follow Jaymie more closely, we encourage you to check out her channel @wjmsmedia. Sending 💛