Living with CIDP - Jason & Patti's Story
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- Опубліковано 3 бер 2020
- To learn more about GBS and CIDP, please go to:
www.gbscidp.ca/
/ gbs_cidpfoundationofca...
/ gbscidpcanada
#cidp
#cidpawareness
#livingwithcidp
#cidpsupport
#cidpadvocate
#patientadvocacy
#cidpfamilies
#cidpwarrior
#gbs
#invisibleillness
#autoimmunedisease
#chronicillness
#IVIG
#ivigtherapy
#gbscidpfoundation
#gbscidpawareness
#peripheralneuropathy
Thank you so much for sharing your story, it gives us hope.
Beautiful couple. Amazingly inspirational story. Thank you for sharing.
Thank you for sharing and giving us hope. We are rare
I went through this crap, remind you I’m 12. I was in LeBonheur Childrens Research Hospital in Memphis, TN, and let me tell you, it sucks. I had chronic weakness in my arms and legs, on top of not being able to feel them, I got so weak I stopped being able to breathe well and was in the ICU for a night. The treatment I got is called IVIG, and takes about 8 hours to complete. The treatment made me worse for a while, it caused migraines and I vomited every day, even after I went home, I was in the hospital for 8 days and got readmitted for another 2 days soon after, physical therapy helped me a lot. For anyone else who has this condition, I’m sorry-
Thank you Sophia, I'm so sorry for you too.
Your sharing is appreciated,
Tara
I was a dancer juggler and stunt performer. I also helped my parents around the house at 27 I developed this condition and I can’t work or walk well. And no one knows enough about this condition
Raymond, I am with you on this. I am now a miserable person.
6yrs and still fighting this illness
GBS MMNCB is hell Physically Socially Mentally Financially
You need to keep on to Doctors Neurologist Physio otherwise get lost in the system
Its a Myth to say you was physically fit before you will beat this in 5/6 months or a year
Meself 50 at the time
Played Rugby Cycle 🚲 Gym
Then hell
Without my partner and kids life would taken a different road
🙏🏴
My wife wanted to put a bed oin our first floor office because I had so much difficulty getting up stairs. Ugh. Thank god for her. Not sure what would have become of me.
Good news: treatable
Bad news: incurable
All of these stories are similar but different. The health care community needs to be woke. I’m in awe of the Hero care givers and true grit survivors . What resonates with me is the determination and the power of love. 👍 ❤️ thank you 🙏
I was diagnosed with CIDP in 1999 and I was told there was no cure for it. Since then, they’ve been treating my symptoms and I’ve used everything from infusions, nerve stimulators, surgeries, and a bunch of pharmaceuticals. 😖
yes no have you feel .took 2 years to find out wot was wrong with me
it was a night mere
no one believe me.
Andy, no one has believed me either. For the most part I'd never really had to go to Doctors, I'd had a very healthy, strong and vibrant life prior. Then everything began to change, a list of narly symptoms, Doctors disbelieving and nonchalantly responding "well you're getting older"..... I've had many insights to who I view as incapable medical practitioners and those I feel are brilliant, reseptive, proactive and caring. Sadly some friends and family have revealed their lack of integrity, compassion or love, being that my roll as "the giver" for them has faded because of pain and being less mobile. Then with new/refined perspective I recognize those that actually live authentically with compassion and aspects of hope and optimism. Socially it's been a process of "cleaning house in a way", minimizing to an authentic wonderful core of friends and family, less yet real. Four years of mobility loss now after years of exhaustion, pain, chronic infections, aspects of denial and gaslighting and a whole lot of loss and grieving.
Moving ahead with optimism and determination for now and hoping to begin infusions in a week or so....
I was diagnosed with advanced cipd today
I was diagnosed with the same, this past Monday, just three days before the fourth of July. Yesterday was Independence Day, it was rough as I was feeling the least independent of my whole life and alone as our whole town (a resort town) was celebrating. This year's fireworks show for me was merely the background to my tears, I've always delighted in them, yet this year I wasn't even able to glance....
I do hope that you're receiving therapeutic relief, healing and support, now that you know.
Thank you for your sharing.
@@TEPO--I have CIDP too. Did you try the Wahl's protocol yet?
The suck part about this cidp is that your friends treat you differently!
Yes, I've done some "shedding" of family and friends. Although it's been rough and I've had to grieve, process the lack of kindness, some heartbreak and let go of some shallow relationships, now I value truth and authentic relationships more and there's more room for respect, joy and happiness along this odd journey.
Why was ars an option, do you mean acute radiation...