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  • Debbie 

Tuesday Thoughts

Advocacy during #GastroparesisAwarenessMonth is always multitasking on many levels. The chronic journey experience for chronic warriors since the pandemic has made the chronic journey even more of a challenge. Yet, every challenge, adversity, obstacle is an opportunity to overcome to grow, to empower ourselves and others towards a higher path. We have become stronger on each step through our journey by choosing to breathe through the storms with research, information, and weighing our options. We look at the facts, data, and then we pray, meditate and move forward with a common sense compassionate empathetic understanding course. Every person is unique and entitled to their own choice. We each look at our chronic journey differently and our human journey differently. I believe part of what has made the decisions easier during this coronavirus was the decades of choices with multiple incurable illnesses. I don’t gamble, play the lottery, nor place bets, go to any type establishment of chance. No, it’s a list of pros and cons with the set of facts available to us. While also acknowledging that everyone is human and this is a novel virus. When I was first diagnosed part of the diagnosis was idiopathic gastroparesis. Since we are in Gastroparesis Awareness Month, I thought I would share this thought with those who wish to read it. In 1999, colonic inertia, chronic intestinal pseudo obstruction syndrome, and idiopathic gastroparesis were the 3 motility digestive diseases diagnoses. It would be a decade or more later before the root cause of my gastroparesis and the motility digestive tract issues were found. In 1999, gastroparesis was either due to diabetes or an unknown reason-idiopathic. If we went back further? Then women were immediately assumed “nervous, hysterical, mentally gastritis “ Women still present gastroparesis in higher numbers than women. It was a blessing indeed to have doctors stand up and stop this path and begin to look for other reasons for very real symptoms. As they would later be justified in their persistence in fighting for their patients. Many patients had easily documented digestive tract diseases, disorders, malfunction etc. The answers were attainable by physicians willing to look for the possibility of a problem.

The diagnoses of POTS and mitochondrial malabsorption would complete my diagnostic picture. It wasn’t a conspiracy by any of my doctors nor a complete lack of competence. No, knowledge and understanding combined with rare disease plus each person’s DNA can account for a very slow process towards successful treatments, or cures. The research which is required to attain the answers which moves us towards a diagnosis then treatments, much less our highest goal of cures is truly a precious slow journey. In the field of motility digestive tract issues in the USA there are a handful of motility clinics which do research, treatments, and continual patient care. Another factor in our slow process is the rare disease category. We do have millions in chronic communities. Yet, not the same as cancer, diabetes, etc. We are not in competition with either of these two amazing groups of chronic warriors, patients, families, friends, and fellow advocates. Our diagnoses often overlap with each other, unfortunately. We are also, unfortunately, closer to motility digestive tract recognition with each advocacy year.

Yes, so much closer than we were a decade ago. In the past going into an emergency room required the presence of mind to teach whichever on call doctor and nurses were there about gastroparesis & motility digestive tract issues. Now, it isn’t necessary at all. The blessings and results of those who have advocated for us all. The warriors past, present, and future with their unconditional support for every chronic community touched by the remnants of incurable illnesses whatever or whichever way they impact our lives. The future generations will be giving a testimony different from the one we speak of in this moment.

The port-a-cath I have now to address nausea, vomiting and dehydration is my lifeline. The type of line would not have been an option in 1999. The constant research with new knowledge provides new insight in many forms. Whether we arrive with a better quality of life and care while seeking cures for chronic communities or other breakthroughs? The port-a-cath has kept me out of emergency rooms. Unless I have another type of problem, like a obstruction-surgical obstruction. A colon that does not function-paralyzed along with a motility digestive tract disease which is slowly impacting more of the digestive tract. I have approximately 7 inches of large intestine-colon. I am on my 8th port-a-cath. Living with certain facts and knowledge doesn’t create fear, rather quite the opposite. The unknown combined with the knowledge of what to do to stay hydrated to the best of my ability, knowing how to balance or feel/recognize the signs of constipation coming too close. Then addressing it very quickly and not allowing it to go on. The surgical obstructions in the large intestine were both after the colectomy in 2000. The last surgical obstruction in 2015 was in the small intestine (progression) the surgeon wasn’t able to remove all of the adhesions she wanted to remove. She couldn’t keep me under any longer with anesthesia. The insight provided was priceless. The point is that as we move through our chronic journey we gather our facts. Then we proceed one step at a time. We make our decisions based upon the which set risks outweigh the risks if e choose one path vs another.

While the coronavirus data has been unfolding along with the data with the vaccinations we weigh the risks of choosing one path vs another.

Many of us know we have very little room for a new diagnosis of any kind. Nor do we have any spoons to do unnecessary battle against an option which could be avoided entirely. Then we factor into this equation the lack of stress once we choose a path layered in common sense.

A flu vaccine, a pneumonia shot, shingles, and all vaccinations are all steps to risk aversion. Taking away the percentage of chance to allow illness into our chronic journey.

While the coronavirus vaccinations have not been studied as long they do fall into the risk averse column lowering the chance of becoming seriously ill or dying from coronavirus. It comes down to the data available and for that they have shown themselves to be very effective.

Thereby making the decision not one of chance or a roll of dice in any way. This is very much a fact based legal pad, research based decision. The peace of mind, analysis, pros and cons, common sense driven thought path which allows an open minded perusal towards the greater good of humanity.

We all benefit when we are each speaking and listening respectfully to each other.

Even when we appear to be at our very worst our compassion and empathy will prevail in the most peculiar of peculiarities in the human journey.

The way humans interact with each other, common sense, empathy, compassion, optimism, positivity, analysis, research, and awareness all benefit humanity. When the majority chooses to the “Do unto others as you would have done unto you” or “my brother’s- sister’s keeper” philosophy. We – humanity benefits from the collective good.

Our unique self and DNA can be addressed in each part of the chronic journey as well as every facet of the coronavirus and its vaccinations. I think addressing each part of this journey in small baby steps in an application of a legal pad for risks vs risks. Then research the facts from reliable sources upon each fact of concern. Let trusted sources be your application for documentation of facts.