#SpiritualSunday #StrengthSunday #SpoonieSunday
#Gastroparesis is #GP #GP is among the many motility digestive tract issues which cause malfunctioning possibilities of varying degrees of diagnosis/es & symptoms many warriors have multiple diagnoses w/other incurable illnesses #POTS #Mito #Malabsorption #CIP #ColonicInertia #ChronicMigraines #Sjogrens
since the pandemic #coronavirus + #DeltaVariant many chronic warriors advocacy has expanded. Some have unfortunately lived as warriors home bound w/few visits except their dr appointments. Out of this pandemic pushed forth the long-awaited tele-visit for chronic warriors who badly needed an option for doctor appointments in their chronic journey. This new variant creates a new challenge while being vaccinated as well as practicing #CDC guidelines empowering each other is the calling for us all both online & offline. While having an opinion is easy & judging might be a brief release of emotions- it doesn’t serve any purpose at all. Really, it only divides us and uses too many #spoons We need to encourage each other w/facts towards helping each other. Every single person is unique, cherished, valued, priceless and unconditional love + support is extended whether we agree or not. A virus or an incurable illness doesn’t ask anything about us at all. We didn’t ask to have incurable illnesses nor does anyone ask for the coronavirus. I know this crisis has factors the first wave did not in 2019/2020 when we were trying to get our bearings around testing and working towards a vaccine. I know the way we interpret facts and information has a great deal to do with whether we trust the source. I would like for everyone to have access to all of the facts w/out any of the political issues or conspiracy theories involved or campaigns intermingled into this pandemic. This larger goal can only occur when we speak calmly, kindly, patiently to each other. Yes, we have freedom of choice. Yes, we have the right to choose our own health decisions. We all want our families, parents, grandchildren and grandparents & children to be safe from the virus. We want everyone who can’t be vaccinated to be protected from the virus and often the only option for doing this is a mask, social distancing and hand washing with regularly testing . We cannot send our immune compromised and children under 12 into a group of people unmasked to risk their lives. We must empower ourselves and others #research #treatments #QOL #QOC while seeking cures for our chronic communities
Side note: many chronic warriors have the additional benefit of insight of years with other chronic warriors in writing rooms, support groups, before there were support groups in their present form. We have the insight into listening to our fellow chronic warriors w/their diagnosis/es symptoms and understanding the DNA we each bring into the situation along with our choices/genetics/support teams/environment/external/internal factors all play a role into degrees/varying levels of dehydration and malnutrition/fatigue/pain on the chronic journey. Every single moment along the chronic journey impacts whether the input and output produce a varying degree time/negative or positive result to any one or more protocol/s or clinical trial/s on a chronic journey. Every single dehydration and malnutrition occurrence to our organ system changes the trajectory of a warrior’s chronic journey along with their future response/s and/or participation in all future protocol/s/clinical trial/s.
I have stated before in my share of my story about my last surgical obstruction in 2015, which required a transition to palliative care, my chronic expiration date.
A member of medical team was checking in with me after the surgery. They were going over everything in the present and past details. While I was sharing the details of my protocols which had allowed me to stay hydrated and control nausea and vomiting levels. Staying out of emergency rooms, away from dehydration crisis’ allowed my organs a reprieve from death. The medical team member told me they had just lost a friend in the last year from the consequences/results of -outcomes of gastroparesis. They said I truly was past my expiration date and doing a great job of managing my IV antiemetics with IV hydration fluids along with at home care on a chronic journey since 1999 diagnosis/es w/infusion/es. I was really surprised. It was a good to hear, while startling because the obstruction this time was in my small intestine. The last obstruction had been in my large intestine. It meant my digestive tract issues were progressing. While no one could tell me a time table of when or how long? It would in large part be dictated by my choices and an internal set of digestive tract issues I had no control of at all. I have long wanted an ultrasound wand which could be connected to my iPad or laptop with software for a reading giving insight to my internal situation when I feel the unmistakable pain which accompanies constipation/nausea and vomiting from an upcoming obstruction. Often the lead in to this situation can be addressed by a combination of RX, OTC and fluids. If it is caught soon enough and I don’t let fatigue override my instinct to act quickly!
The linzess and fluids mean I will be going back and forth to the restroom #spoons + #spoons + #spoons yet these spoons are much preferred to all of the #spoons triggered by an obstruction – a surgical obstruction can go sideways really quickly. Those who have asked how we tell whether this is a situation with chronic constipation leading to a life comprising degree? The pain of constipation associated with this type is quite unmistakable along with bile which begins back up in throat. It doesn’t happen to everyone- remember everyone is unique, but if you begin to vomit small amounts of green frothy bile? You need to be in an ER or close to one insisting they look at you and why. The combination of pain wrapping around your abdomen with intensity and nausea-vomiting bile are warning signs. My few days out warning sign is the spams of intense pain like labor pain but very different. If you are a woman, you understand. The few days out window is used to hydrate and break through constipation. Most of the time this is successful. As I said, this is a very delicate process of balancing our spoons for our chronic journey.