Living with Chronic Illness: A Path Forward | Realities of the US Healthcare System
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- Опубліковано 29 вер 2024
- There are millions of people affected by chronic conditions in our country, but so often the healthcare system and the people working within it seems ill equipped to provide care that is patient centered to those who are affected most by our healthcare system. Today, I have the privilege of sitting down for an interview with a frequent panelist on the channel, Melody. She will be sharing her experience living with chronic health conditions, and providing invaluable insights of how to make a better path forward. Both for patients and healthcare providers who help patients navigate chronic illness. As a healthcare system we tend to do well with illness we can see. But the invisible illness, that is where we tend to come undone. Together we can fix that. This is a start. Chronic disease is not new, so we need to help our healthcare system work with patients to tackle it.
Melody's UA-cam Channel: / iamtwirling4joy
Twitter: @twirling4joy1
Email: twirling4joy@gmail.com
Original Song: • If I Die Young-The Ban...
Melody's Version: • IF I DIE YOUNG / From ...
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I started this channel because I wanted other working moms, nurses, nurse practitioner students, nursing students, and whoever else to know that you CAN do school, life and work! I'd love to hear your stories of how you combine your personal interests with your family life! You are doing great things, and I hope you remember that!
As Covid Vaccine mandates become more popular, I have a few thoughts as to what is ethically the right move here. Covid vaccination decreases spread of illness, and will decrease likelihood of transmission to patients. However the vaccine mandate may cause more nurses to leave already short staffed units, making working conditions more unsafe. And costing more lives in the end.
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Thank you Liz for providing this forum for nurses. I wanted to say, I applied for a teaching position and the pay and health care insurance were horrible compared to the hospital.
Nursing IS HARD, but IF you can find a speciality you love, and work with great people, PERHAPS it's possible to ignore the RUTHLESS company you work for. It's not easy to be alive in 2022.
Also would you consider hosting a show on Covid-19 and allowing nurses to chime in? I would be very interested to hear about nurses' experiences. We could use a reality check and time to heal/move on.
Thank you again!
I have been a RN for 10 years. Went from super healthy to realizing I had Ehler’s Danlos Syndrome at 28 now I have been diagnosed with 5 major chronic illnesses in 4 years. My illness effects me so much that I can’t beside nurse anymore and there is huge grief. I almost hate how I am treated and the fact that I am also a part of the medical field. I always tell people you have to advocate for yourself because others won’t.
So sorry to hear about your illness. I have several chronic conditions and have been reinventing myself over the years as my limitations allow. As with you, the grief is huge. But I focus on what I can do and advocate fiercely for myself. Have met very few healthcare providers who listen with either sensitivity or respect. Wishing you the best on your journey.
Similar. Nurse for 20 years, turned down Music scholarship and also philosophy and psychology, but I still use it all. I was fine, healthy, etc until I got covAIDS on the frontline in March 2020 and got NONE of the care I was giving at urgent care (worked the hospital for 15 years but Obamacare made me need to re-route), and I"m a disabled longhauler now and severe autoimmune diseases now, BUT I went outside the system to IV ozone, HBOT, and just found out I have a bacterial infection in the upper root of a tooth that a horrible dentist screwed up, and I learned that a lot of my chronic issues are coming from that!!!! Soooo much exploring. What a learning curve. I'm done with the bedside. I miss it. I loved it. But I was dying to help others live.
How were you able to get diagnosis so quickly?
I’ve been ill since I was 15/16 years old and have been ignored and gaslit all these years. I’m 38 now and bedridden and still don’t have a diagnosis and still am not taken seriously.
@@Pari_Pixie I went to a geneticist to get my dx which was not until 28. I also had waited a long time to find out what was going on with my body.
This is Melody. Thank you, Liz, for allowing me to share my thoughts & my music with you & your audience 🎶 I am overwhelmed by the kindness from you, others on the panel who have chosen to attend, and your community. Blessings to you all 😇
Always appreciate your input Melody
Thank you! I don't know what I did to earn the respect of you and others, but I cherish it@@nurseadrianern Thank you
love her channel
THANK YOU!!!! this was all you lady!
❤️❤️❤️❤️❤️❤️
What I find difficult is trying to address heath issues in a 15 minute appointment with a doctor
When they spend time charting while in appointment. Which gives less opportunity to address health issues.
Waiting 2-3 months for a 15 minute appointment that can only be used for 1 health issue
The way the health system is set up
Is wrong !
Fixes small band aids vs fixing issues
Wish the system could change
We’re we invest in our health prevention to solve health issues
Thank you so much for this conversation! I related to so much of it. I am a nurse & have endometriosis, and it took me 15 years to be diagnosed. The last two years of that 15 I was actively searching for a diagnosis and saw 19 doctors in that time, and so many of my symptoms were dismissed and I was told I was just stressed and depressed. Things got even busier for me after I had excision surgery (gold standard treatment), and I was going to 3-4 appointments a week and working. I had to stop physical therapy because I didn’t have the time to even do the exercises between appointments. It was two hours away from my house, so 4 hours round trip. And I was already super exhausted- I used to be a marathon runner. Now I can barely keep up with my days.
I never understood the ins and outs of chronic illness until my experience with endometriosis. It’s definitely made me a better patient advocate as a nurse!
And melody, your comment that “you can suffer a long time and not be dying” really hit home! There’s also a lot of grief that comes with losing yourself, but still being here. Chronic illness changes you. But when you aren’t physically gone, it’s hard to explain to others that loss of self and future self that’s felt.
Thank you Melody for sharing your perspectives on healthcare. Thank you Liz for assembling the most amazing humans here on the tubes. Many blessings 💜
This is Melody. Thank you for watching. I appreciate it!
Thank you doing this! I have chronic pain and disabilities Its not exactly chronic illness but yeah
This is Melody. Labels are just that - labels. It's your experience that matters; not what it's called or how it compares to the situation of another. Your experience is important.
@@IamTwirling4Joy thank you 💜💙 and you did great in this live by the way!
Thank you Melody and Liz for bringing up this topic. I had Covid early 2020 and it triggered two auto immune diseases. So I am new to having chronic illnesses. Thank you for bring these topics up. My friends struggle to talk with me sometimes like my illnesses are the elephant in the room. I am also a nurse and I want to be a better nurse for my day to day patients.
Hi Linda. This is Melody I'm sorry you're going through this difficult time. Several of my dx are autoimmune in nature, so I can relate.
I think it helps to start difficult conversations by just acknowledging that it is uncomfortable to discuss but even more uncomfortable to leave so much unsaid; That you are going to make yourself vulnerable out of respect for the relationship, and check in frequently about how the listener is interpreting and feeling about the information you are providing .
From the stories I've heard, your suffering will increase your empathy as a nurse. Thank you for choosing such a challenging profession.
Hugs Linda, not easy living with a chronic illness. You sounds like a truly wonderful nurse. Bedside compassion is probably the most important quality to a sick patient.
@@IamTwirling4Joy Thank you so much for taking the time to share tips on how to start a. discussion that is comfortable for both my friends and I. Thank you for your talk last night. It opened my eyes to a lot of things I have never even thought about. Also thank you for being so open and transparent about your healthcare decisions you have made about increasing your quality of life even if it shortens your length of life. I agree quality is much more important and valuable than quantity! Especially, If you are forced to choose between the two or at least which is your priority between the two. ❤️
Am I the only person whom feels Kovorkian cocktails should be available for chronic conditions that have run there course(s)? And, all options for treatment/remedy are exhausted or declined.
I think some states allow people to decide (Oregon). I also have seen a lot of suffering and believe a person with sound judgement has the right to die. I have observed folks just quit eating. I once had a patient voluntarily be taken off the respirator knowing her future was grim.
@@montanagal6958 Agreed!
Hi. It's Melody. No, you are not alone. As I mentioned in the stream, people can suffer greatly and not be terminal, and this is another situation where I feel taking into consideration the totality of the circumstances, not solely the diagnosis and prognosis, is appropriate.
@NurseLiz If you really want to take on a controversial topic, this is a much needed conversation!
I truly believe they deep down like to see us people suffer daily constant Life ruining Pain, keeping the one Medicine already proven to work for some of us Severe Chronic Pain Illness people, but they care for the lives of drug addicts, and we Severe Chronic Pain Illness people are treated as if we don't even exist, and yet also they treat us as criminals for nothing, punishing us for the illegal wrongs of drug addicts. Also negatively lying about Opiate/Opioid Medicine. I no longer believe there is a real united states country. It's actually one big evil con/lie, they must worship Lucifer to do such evil unto people who have done nothing wrong, do not deserve such evil, nor should proven to work Opiate/Opioid Medicine be kept from us by these wretched actual communist-Nazi-Luciferian evil ones- who rule this North America.
Repeating what I listed above. But people of this earth need to know the actual truth about this. A true cruel, inhumane evil which rules this FAKE-united states.
I’m glad I listened to this. I am an RN high risk inpatient case manager and I have been thinking about switching to disease management to hopefully help with some of the interdisciplinary challenges. Not sure if that possible but there has to be a liaison for patients and providers to manage this. There has to be an easier way to do this. Thank you Melody for your insight!
This was a great ..thank you Liz and Melody
My pleasure!
I’m watching this live for the first time today and man 46:42 Melody’s throwing shade over here! Spittin all the facts! Girl you didn’t have to burn me 😅 Absolutely love Melody 💕 and I definitely love her personality and story! She is ONE TOUGH COOKIE! I just recently had a bad IBS episode this afternoon and can definitely relate to a few of her points. This was a very much needed conversation that needed to be had! Love this live! And we love Melody! 🥰
This was so informative and thoughtful. Thank you both!
This is Melody. It is such a blessing to be included in the discussion. Thank you for listening!
It was so awesome to have Melody on, I'm glad it was helpful!!
Good day to all. I'm shan I just saw this video and it's really captivating because it touches on all the topics I have been struggling with my from teen to adulthood. I was told not to go to school and apply for Ssi. I went through so much discouragement. Thank you for sharing ❤
long and miserable is my preference.....life is worth living regardless of the challenges you face......those who think otherwise are suicidal
Hospice nurse... Viewing after live show.
? How much do you talk (frankly) about death & dying ? Friends/ medical personnel and social media
I was awed to discover this poem. I hope that Melody can appreciate this poem. I hope that many can appreciate this lecture. As in palliative care, this story resonated with me.
Epitaph
by Merrit Malloy
Original Language English
When I die
Give what's left of me away
To children
And old men that wait to die.
And if you need to cry,
Cry for your brother
Walking the street beside you.
And when you need me,
Put your arms
Around anyone
And give them
What you need to give to me.
I want to leave you something,
Something better
Than words
Or Sounds.
Look for me
In the people I've known
Or loved,
And if you cannot give me away,
At least let me live on your eyes
And not on your mind.
You can love me most
By letting
hands touch hands,
By letting
Bodies touch bodies,
And by letting go
Of children
That need to be free.
Love doesn't die,
People do.
So, when all that's left of me
Is love,
Give me away.
I'll see you at home
In the earth.
-- from My Song for Him Who Never Sang to Me, by Merrit Malloy
Nurse Liz and Melody, thank you for sharing this important message. I work in the field (when I work) and I have a 1:million disease + several AI friends. It took many doctors, misdiagnoses, land mines of dismissals by misogynists and bad doctors to even get where I am now. You both spoke of knowing your disease/kid’s dz better in these instances, but I can tell you that not every provider is ready to listen to what you have to say. They think they know everything because they read the paragraph in Med school or from Up to date. 😂 The result is bad care, sometimes disastrous results and patient mistrust of the health care system.
I’m in the process of rebuilding my team after my Wizard left the state. 😢 His replacement tried to do a neuro exam via virtual 🤦🏽♀️
Health care just sucks because it isn't ! Why does the patient have to do all the research and detective work and protective work ?????????
I have given up completely on the traditional medical system for my chronic illness. 99% of the doctors I have been to either tell me it's all in my head, tell me they don't know what to do, or say, "No patient of mine will be diagnosed with_____."
The others make my condition worse.
And I have to pay them for my wasted time.
Thank you so much for all your insights. Wish I could have found this 20 years ago.
Yeap this is my life awful and Dr said get disability and was turned down still fighting it with a lawyer horrible
This was wonderful! Thank you.
Why does your name tag say Liz, she her?
Honest question
Thank you, Melody, for sharing your insights and using your precious energy to help us.
You are a very strong person who has faced extreme life challenges and made the best of them.
May God bless you.
Melody, there is no cure for Fibrillaryglomular Nephritis 🐿❤️
Liz, I have Fibrillaryglomular Nephritis. I too was a nurse. 🐿❤️
2:02:45 Dear Lord Melody 🥺 Truly beautiful. When you sung that you’d be a rainbow, I felt that. You already are Melody ❤️
Keep doing your Music, Music is good for the Soul.
Liz, a needlestick caused this disease 🐿❤️
Please ! Someone research Fibrillaryglomular Nephritis. I have it,was a nurse, got stuck with a needle. I’m stage 4 severe kidney failure🐿❤️
Fibrillaryglomular Nephritis 🐿❤️
Liz, like and follow!
Thank you Melody. My mom had chronic illnesses all of her life. I was too young to understand then, but I understand why she was tired, why she couldn't work, why jobs abused her, why it took years to get approved for disability. The doctors and specialists that overlooked her. Didn't educate her, called her non compliant, but she barley knew what diseases she had (denial is strong), how can you expect her to manage her meds, doc appointments, blood sugars, pain ect, when you don't educate in a compassionate way? She died at 62 yrs young, I watched her take her last breath. She fought for everything her whole life and all she wanted was community and love.
Thank you for advocating, thank you for being 'the difficult patient.'
Thank you for refusing the 'life saving infusions' to live your life.
My mom would have loved you.
- Kayla