1) Everyone, everyone is always in charge of their own health in all circumstances.
2) When we are speaking about a deadly disease/virus – we would hope everyone would see their options clear eyed.
3)Viruses aren’t red/Republican and/or blue/Democratic nor are their vaccines red/Republican or blue/Democratic. Just as Polio vaccines were not a party issue, but a human issue. Flu vaccines are not a party issue, but a human issue. When our children are told they must receive their full and complete vaccines before beginning their school year, or finish their vaccinations they must go through their vaccines to keep us all safe. I hope we all take a moment to be our empathetic and compassionate selves for ourselves and others while exercising our personal freedom on this human journey. (As I was rereading this writing for edits I remembered the related issue smoking. The slow transition of choices we all experienced over decades. The topic of personal freedom in relation to cultural changes were like tectonic shifts in the universe with smoking and non-smoking. Anyone of a certain age knows how much of a change has occurred in the last 20++years. The lawsuits regarding cancer in regard/leading to disclaimers on the cigarette packages. The iconic Marlboro woman ads which no longer exist along with the entire campaign to make smoking cool and sexy. Decades ago we didn’t know anything about 2nd hand smoke and now we do. The person smoking usually has a filter the close contact to the smoker doesn’t. If they have space and room to exercise their personal freedom I pray they can. Sometimes options are not available.)
We do all of this together for the greater good of humanity.
We are in the process getting us all on board for the greater good of our country, as well as humanity. We would hope our empathy extends to seeing, hearing, feeling, and being a part of understanding everyone’s vaccination’s process and each person’s personal freedom.
Because at heart Americans care about our fellow Americans!
Just as when we realized seat belts saved lives, slowly each of us began to make the necessary changes. At the beginning many didn’t appreciate these changes. Yet, overtime it was shown how many lives were going to be saved then the statistics began to be shown for the children. Then head on collisions. In the midst of all of this Americans do what they do best. They rally around each other and begin to speak to each other and share their own stories, their own truths. When the time came for it to be passed as a law- state by state… the bumps were still being worked out. We take our personal freedoms very seriously! It is the bedrock of who we are as Americans. Yet, the truth of saving lives, our children’s lives began to grow from community to community. The testimonies of lives being saved by seatbelts along with statistics became the wildfire of truth sparking change. We eventually had enough support to passage. It is now a foregone conclusion that if you are in a vehicle your seatbelt is on, because you would prefer to live than die.
We can’t step in and override personal freedoms for each person. Yet and still, whose choice will prevail in no country for old men/women stepping out of COVID-19 in and out of a silence which waits upon us. The chronic journey experience interpretation of long & short is often misinterpreted by ineffective counsel. When blanks are filled in on the simplest of topics, example-“Row,Row,Row Boat….” A memory, malnutrition, dehydration failure, biofeedback technique used repetitively suddenly goes blank in the early dawn hours….. so much so… on the verge of seeking Google to stop frustration. Then viola! The gap, memory, malnutrition, dehydration, search,biofeedback, search wall being hit in the early dawn hours at the verge of migraine symptoms is eliminated…peace restored? PeaceBoat intact! Biofeedback can resume! All is well! Thank you Jesus!!!
Personal freedom and Healing can sometimes collide while advocacy doesn’t align itself to any party nor does it choose to assign a position on one side or the other!
We are human beings with feelings sharing our lives on this chronic journey! As a chronic warrior diagnosed in 1999 with (idiopathic) gastroparesis, colonic inertia, chronic intestinal pseudo obstruction syndrome. It would be a diagnosis of POTS , Mitochondrial malabsorption in 2010/2011 sjogrens as well which took my idiopathic gastroparesis away. It was no longer a big mystery anymore! I was absurdly relieved by the medical science answers. Every single person who lives with gastroparesis and motility digestive tract issues like colonic inertia and chronic intestinal pseudo obstruction syndrome with any other multiple incurable illnesses understands EXACTLY why answers are sooooo very important!!! Even without successful treatments or cures! Having the information is a huge step forward! How do you solve a puzzle if you don’t know what you are trying decipher? You need to know your starting point, strategy, protocol, clinical diagnosis and clinical trials and plans. Dr Thomas Abell has given me my diagnosis and dedicated his life to research. Which can be difficult with trial and error but it is the only way to learn what works and what doesn’t. The need for the blind assignment in some patients receiving a placebo in a testing case of new treatments or devices would be the only way to bring new medication or devices onto or into our communities. Where certain testing could be done with non-human at a certain point it would get to us. Dr Abell was initially, I believe, the only motility specialist using a temporary gastric electrical stimulation. In 2006, I had received and agreed to participate in the group study. (I still have my small booklet of papers signing consent to participate in the temporary gastric electrical stimulator with both the doctor and patient being blind for control in research & documentation) The choice again of the information of an acceptance that the doctor didn’t know whether the device was on or off was an added layer of documentation with authentication. (An additional piece of information in this narrative example- the device had an emergency use FDA approval, just as the vaccinations do. While it isn’t absolute apples to apples analogy? It does put it into the nearer than far ball park) Dr Abell did a patient check-in by phone. We were staying at a local hotel room which did discounts for all patients at the hospital. Since our home was approximately 5+ hours from Dr Abell we decided to stay there during the temp trial period. We had a direct number for Dr Abell, if something happened where we had an emergency. I had an emergency. I woke up with one of the wires shocking me in my throat. We called him with a description of the issue. He said to come in first thing in the morning if I thought I was okay for the night. We did, he stood in front of me, said this is going to be uncomfortable, but it will be quick. Dr Abell, “I am going to turn the wire counterclockwise like screw and give a tug.” He did it exactly as he said and it was over really quick. He went over what had occurred while I had the temporary in and he said “here is what we are are going to do, you are too sick, too underweight, to redo this and take a chance of a maybe on or maybe not. If you agree, we can turn it on put it back and see how it does.” I agreed. We did. We then went on to schedule the permanent GES. I should have paid closer attention to the details looking back with 20/20 hindsight, but BUT that is all after the facts. I had to try it to know, I would have never ever known if I had never ever tried the gastric electrical stimulator. It would have always been a question mark of what if? I am the kind of person who has to have questions answered and situations solved as much as possible. The colectomy was the best decision I ever made in my life at the recommendation of Dr Abell. Dr Abell was recommending the permanent GES well that was a rough moment.
A lesson tried, it was a success in what it was meant to do for nausea and vomiting, but my body completely rejected it! Failure!
Success and failure it has to be said correctly when every person with a motility digestive tract issue is different even with the EXACT SAME DIAGNOSIS AND THE EXACT SAME TIME ON THE CHRONIC JOURNEY!
We should always approach our healthcare decisions on what is best for our quality of life and care while seeking cures for our chronic journey. I don’t know how long this will take, but I would prefer to live a high quality of life and care with advocacy for myself and others.
This isn’t pressure for others to do the same, but my truth. If you feel the same and wish to empower yourself and others with unconditional love and unconditional support with actionable advocacy – I applaud you & celebrate your chronic journey growth experience in whichever way you choose to empower ourselves and others towards seeking cures for all!
When a gastric electrical stimulator allows you to live a life without or with manageable symptoms of nausea and vomiting while having motility digestive tract issues it is the right decision for you. If your body is in too much pain, physically, neurologically, or otherwise after an attempt at pacer relocation & wires replacement. When you have done all you can physically with the pacer and wires leaving no other options to salvage the GES. The mental & physical pain pain begins to deteriorate your well-being so after living the chronic the chronic journey experience for this many years it becomes an equation of pro and cons. Then add out options medically with the GES. This turns out to be easier once a final decision is settled upon. The GES is turned off for 3 months and I continue with my protocols as I had been doing all along. Then fast forward to removal and healing the best decision was made all of the constant physical, neurological pain begins to lessen. Slowly the daily, hourly, moment by moment pain is erased. When pros and cons are weighed out into a column it helps greatly to use the chart for nausea, vomiting, pain, energy. Then determine benefit analysis for which protocol is beneficial in quality of life.
Personal freedom and choice is as unique as each of us