Blessed Be to the Blessed To Be
We are humbly blessed to be blessedly blessed by our blessings. May we share blessings be unto all uniquelyuniqueness flow upon our humanity. William Shakespeare born today, blessed us with the gift of a timeless language. Therein the title of “Blessed Be to the Blessed To Be” language- words- creativity- creation of words through art it is a beautifully timeless forever gift! Sometimes it feels like God places certain people & their gifts of extraordinarily unique, beyond measure, talents in this earthly journey to be inspirational. Whether you are a believer or not you can feel the extraordinary gifts/talents of Willam Shakespeare.
As I turn the pages of our advocacy on our chronic journey. We seek to convey the details of motility digestive tract issues along with mitochondrial, & POTS (also chronic migraines). All of these ingredients on the chronic journey are contributing factors to the malnutrition & dehydration of this chronic journey. While I have been extra, extra, extra, extra, blesssssssed to have had IV antiemetics along with IV hydration protocols since 1999.i am not immune to the facts. My digestive tract has progressively worsened overtime. My colectomy in 2001 was a true lifesaver for me. I received a quality of life and care which made my life livable both physically, mentally, emotionally, spiritually. It saved me, yet my gastroparesis, chronic intestinal pseudo obstruction syndrome remained. How do I know this?
In 2003, I required another surgical obstruction to remove an impacted bile and an internal hernia. My 7 inches of colon- large intestine which was left from the 2001 colectomy, a direct resection to my rectum, was still paralyzed. I live with a malfunctioning/ progressive digestive tract issues which are like trying to manage a high wire act from the inside. Always trying to do the exact set of goals/tools/input to output. We do this all based upon our broken guts. People with high blood pressure have blood pressure cuffs. People with a fever have thermometers. People with erratic heart beats can measure their pulse rates. Someday we will be able to measure our emptying rate/motility of our digestive tract system. Rather than relying upon our diaries, while absolutely necessary & extremely helpful not a complete reflection upon our motility. We should be able to do a hand scan from esophagus, upper intestine, stomach, lower intestine to rectum while linked to software on a device which immediately gives feedback to a patient about their digestive tract top to bottom. This information is just as important as blood sugar, blood pressure, & temperatures! It is life and death for motility patients.
In 2015 another surgical obstruction was required, this time in the small intestine. The surgeon removed as many adhesions as she could, but they couldn’t keep me under any longer. I was also told the state of my digestive tract wouldn’t allow a g-jtube placement. It was during this hospitalization I was told how much of an impact the IV antiemetics-hydration fluids had made to my chronic journey.one of my medical team members had lost someone a year prior to my being admitting with very similar issues. They didn’t have access to IV antiemetics-hydration fluids. The doctor shared how the ZAP -zofran and phenergan protocol with hydration fluids had allowed me to live past my “expiration date.” While it seems stark it is also true. Every time we – our organs are repeatedly put through dehydration they are irreparably harmed. Our brains are scarred, hearts, lungs, internal organs are all scarred. The way we used to “bounce back.” The chronic journey along with age gradually takes the flexibility away from us. It is extremely important to stay on top of our nutritional needs as well as our hydration for as long as possible. The cracks, every single one of them, all matter! The dehydrations, every single one of them, they are all being tallied by our bodies. Even if we lose track of how many have occurred our bodies do not forget. Our brains are being harmed by its lack of nutrients and hydration.
PLEASE, PLEASE, PLEASE, take this seriously if you are at the beginning of a chronic journey. Standup for your best health care. It is your life, your quality of life and care. It is difficult to find a good motility digestive tract physician. Yes, it is not easy. You are worth your time and effort. You are worth your quality of life and care. You deserve to be heard and deserve to be seen for yourself not as a “statistic.” You deserve the time and effort of a face to face where you do not feel as if a quota is being managed more than your patient to doctor treatment of do no harm.
Part 2
You are not alone on your chronic journey if your memory & mental clarity is creating problems for you.
Recently you may have seen my searches for mushroom powder & manuka honey. These are both a byproduct of my recent frustration with short term memory loss and to some degree long term memory loss issues. Those on the chronic journey know the frustration of trying to have a conversation and within each sentence you cannot find words or names you know you know.
If you were unaware of these facts, it might be less frustrating, but I, like many others, are very aware of the gaps or “holes” in trying to communicate with an increasingly foggy – “brain fog.” We – by we- I mean the gastroparesis- malnutrition- dehydration community initially. This became larger as advocacy became clearer, then the brain fog became foggier along with the predictable chronic health issues. Mitochondrial malabsorption,POTS, & 3 motility digestive tract issues along with chronic migraines isn’t anything rare or unheard of within the chronic communities. There are advocates fighting, seeking recognition for all chronic communities when they have the energy to do so each and every day. There are strong, beautiful, amazing, wise, inspirational,motivating, educational, loving, empathetic, compassionate, supportive, advocates lifting all chronic communities, this is who we refer to 24/7/366 in 2020.
P.S.
A day late post from 4/23/2020 completed on 4/24/2020
The mixture of William Shakespeare & advocacy;-)