Idiopathic Gastroparesis, how I seek clarification and communication- I try to find tangible real life objects to compare.. onions if strong enough, can bring tears to a the strongest … I wonder if we could make a comparison to incurables, invisibles, to onions? You peel back a layer -then another/ these events occur over time with research. The first layer brings chronic pain then the next layer is chronic nausea and vomiting intermittently. The next layer is diarrhea and constipation. Then we arrive at dehydration, malnutrition, and the unique challenges of nutrition with malabsorption issues. We peel back the next level with trepidation and careful optimism because it is a day to day – person to person walk of weighing chances of sepsis, staphylococcal infections with the need to bypass a malfunctioning digestive system for hydration & nutritional needs with often a ZAP protocol of antiemetics & hydration to save lives at the risk of infection but it ends up being a very very fine balancing act of risk & reward (survival). We peel back another layer to find postural orthostatic tachycardia syndrome clinging to neuropathy. Upon further review we peel back the tightly melded layers of mitochondrial Malabsorption disease within these layers is hyperhomocysteinemia an independent risk factor for cardiovascular disease. There are layers interwoven into this process which are very chaotic like a blooming onion ready to implode at any given moment. Then at other times it is neatly organized and organized easily presented to the audience by the advocate. The blooming onion is on the horizon at any given moment when the facts begin to be misused misunderstood or misinterpreted by those seeking something other than truth, treatments, & cures. The layers, and its tears can be a therapeutic moment.
We just keep trying to survive & understand.