A Chronic Warrior’s Advocacy w/Gastroparesis Motility Disorder Awareness Month
While many of us are warriors with multiple diagnoses/incurable illnesses. Our personal advocacy decisions has made the #Advocacy over #Adversity dance of 2019-2021 chronic journey growth experience altogether type challenge. The choice to vaccinate is a personal one that I pray each of you make while not in an ICU nor living with chronic long-hauler chronic illnesses.
Every chronic warrior’s journey is just as unique as our DNA. Our similarities, varying degrees of symptoms and paths with diagnosis/es often allow us to relate to each other with similar compassion/empathy for empowering for ourselves and others.
The chronic journey we experience has many challenges, each of those vary too. When we are diagnosed and even that itself can be a true hurdle too! Not like it was in the beginning.
My diagnosis/es in 1999 averaged approximately 8-12 years at that time. The work, advocacy, motivation, education, empowerment, enlightenment, encouragement, and unconditional support — all has truly been a priceless gift of dedicated advocacy over adversity.
The chronic warriors, patients, families, doctors, nurses, friends, and supporters who gathered and lent their spoons toward the common goal for research, treatments, quality of life and care while seeking cures for our chronic communities has been a blessing for all chronic communities. Thank y’all for every #CureGP #Gastroparesis #GastroparesisAwarenessMonth #CIP #ColonicInertia #MotilityDisorders
#Spoonies #Chronic #Warriors #Research #Treatments #QOL #QOC #Cures #ChronicCommunities #AdvocacyOverAdversity
Whether we have been blessed by not being exposed to the coronavirus or making it to the vaccination, we still follow all our fellow spoonies offline and online.
When listening, reading, updating, and seeing data through compassionate empathetic understanding everyone of us is part of our human community. Whether they are a part of the chronic community/ies I hope they are not. This is one group/club you really don’t want to be a member of for life incurably.
If you, on the other hand do find yourself requiring support- unconditional support and groups willing lift you up in a myriad of ways regardless of your diagnosis then just type your description of need. These are the blessings of truly dedicated advocates and many doctors who understood the holistic value of patients whilst unconditionally supporting each other and advocating for their own health. While I will spare everyone a lengthy chronic historical advocacy moment, I must mention Association of Gastrointestinal Motility Disorders | AGMD & IFFGD, the International Foundation for Gastrointestinal Disorders both non-profits founded in 1991 by patients struggling with their illness.
While there are many more non-profits, these are the two which hold a foundational link of unconditional support towards our common goal.
As I return to our current situation of coronavirus and living our lives with chronic illnesses.
Many of us live in areas where high transmission rates are an issue. The map showing substantial to high over our state or possibly your state.
The way my palliative care doctor addressed this situation was very calming. She said, “wearing our mask, even if your looked at as if your crazy, like she was, wash your hands (even though they begin to crack a little-she is seeing a lot of patients & hand washing a lot)& social distance. We take care of ourselves and immediate family stay safe and calm. Those of us who have family members who are vaccine hesitant, it isn’t our job to change their minds. It is up to them to be comfortable with their decision and hopefully they are doing the mask, hand washing, and social distancing. We also pray that our family, friends, or anyone else doesn’t become seriously ill or die while being vaccine hesitant.
The stories of young people and others begging for the vaccine in the ICU, as the doctor has to tell them it is too late, is too heartbreaking. The relatives then getting the vaccine and telling their story with the hope that it will help others.
The legacy of a vaccination testimony being passed on to help save lives is for the greater good of us all.
We want to save all families from experiencing grief. We do not want to hear about another family losing their mother, brother and then begging their father and remaining family to vaccinate because they do not think they can mentally, physically, emotionally manage anymore grief. She is a nurse who has begged her family to take the vaccine.
The crossing of advocacy over adversity sometimes allows for greater empathy. Yet, our spoons must still be carefully managed.
At the very beginning of the chronic journey experience with incurable illnesses the amount of unknowns is not the fault of bad doctors. Nor is it because of a conspiracy. The lack of knowledge, answers, the use of clinical trials to try to find answers requires control groups, and trial and error. While participating in one of these I became too sick to continue. I was pulled out of the trial study.
The insight gained though was priceless.
During the year of 2006, I took the leap of choosing path to lessen symptoms. There is not a cure available and while I was able feel life, all be it briefly, with limited nausea and vomiting. The trade off was a great deal of pain. Weighing pain, electrical shocks, and mental anguish, a slow repeating
Advocacy is about unconditional love and unconditional support for all – all chronic warriors- all chronic communities- all chronic incurable illnesses.
The chronic warriors on the Gastroparesis Motility Disorder Awareness Month will do the amazing advocacy today and all of this month.
We also know advocacy for chronic warriors in all chronic communities with incurable illnesses is 24/7/365
#POTS #Mito #GP #CIP #Sjogrens #ColonicInertia
Motility Disorders + Mitochondrial malabsorption + chronic migraines