Chronicling our 2019 into 2020
Hindsight’s 2020! Let’s welcome her by chronicling our chronic journey in full reflection.
Chronicling our chronic journey of advocacy with truth empowering us forward. Our warriors of decades gather to usher the end of 2019. We open 2020 with chronic chronicled hindsight, purposed intent for research, treatments,quality of life and care, while seeking cures for our chronic communities. Our motilities with paralysis varies as does our treatment plans to address our many varied symptoms. Our truth in mission always seeks the essential elements, regardless of our layers, diagnoses, or time in the chronic journey.
In the writing of this I think of trying to convey how many variables there are within a set circumstances I think of a slot machine in Vegas or a lottery. Still the odds of finding an exact match, even with the same diagnoses, same amount of time on the chronic journey, same/ similar symptoms, same treatments- yet different results. The one thing we each bring into the equation is our DNA. Even with family members diagnosed with the same diagnosis, it still will have variations in symptoms.Treatments and response will vary within the same family. The variables and variations are the consistency within the chronic journey.
Every single time a motility appointment was done between a patient and a doctor it produced a key finding. (if it was done well). Many Palliative Care teams continue to use this format including pain, nausea, vomiting, & fatigue scales.
A lot of us have filled out a chronic nausea, vomiting, energy level, pain scale page. All of our visits are entered into a data base. There are people who are only familiar with the pain scale.
Whereas there are others who have seen this chronic scale for over a decade. Some have seen an even greater detailed questionnaire which was being used to understand the “why” of an idiopathic gastroparesis/ motility digestive tract diagnosis. In my personal chronicling of chronic truth this journey was achieved in 2010 with dysautonomia- postural orthostatic syndrome POTS & Mitochondrial Disease. The initial diagnosis/es in 1999 left the idiopathic question opened-ended. The combination of symptoms, testing, labs, a decade of patient-doctor care after the initial diagnosis/es. The response to a medication verified the issue and a muscle biopsy confirmed the mitochondrial disease. Additional nerve testing confirmed the progression of autonomic neuropathy. Dysautonomia is a medical term utilized for a group of complex conditions that are caused by a malfunction of the autonomic nervous system Postural Orthostatic Tachycardia
Once you put all of these pieces together in a chronicle everything begins to make sense.
Every chronic warrior has a set of variables. We, as motility chronic warriors know the paralysis of the digestive tract, its symptoms, & treatments all have variations which contribute to a path necessary to find our best quality of life and care while seeking cures for our chronic communities. It is the research with its central data base which will begin to change the lives of all chronic communities.
The phrase we have so often heard of is “hindsight is 2020.” It is exactly 2020. We are beginning to chronicle in our chronic journey from a frame of reflection knowing this is an ever changing journey. #1ForAll_All4One every layer reveals an answer or new truth.
We breathe in requiring our lungs our bodies can’t function without out our heart.
So it goes with research. Brilliant, quality, informative research sitting in an office, unshared won’t help all of the millions suffering in a near failure to thrive situation.
A heart without an organ donor program would result in lives lost. We are the lives who need to be connected.
On the eve of 2020, our chronicles on the chronic journey provide hindsight, insight, into empowerment these are our truths.
Connected together all sharing and speaking with one voice our actions with communication/conversation become treatments!
We are the cures! Our chronicles in 2020 with advocacy!
Chronicling our chronic journey to research, treatments, quality of life and care while seeking cures for our chronic communities.