Feb 11, 2020 Latest post:
Jul 23, 2021
5 years ago I began my journey down the rabbit hole. I have gastroparesis and intestinal disynchronization (my stomach and large intestine are barely functioning) and my small bowel is in overdrive. This is likely due to vascular Ehlers Danlos Syndrome and the failure of Collagen 1 genes throughout my body. My bones are also very hard hit. I have several atypical fractures in my back as well as missing bone in my shoulder. This is due to pre-menopausal Osteoporosis they don’t completely understand yet. I can drink a little, and occasional spoonfuls of food by mouth, but my weight is sustained now by TPN after a year of failing to thrive on a J-tube. I still have the J-tube to take medications that can’t be given through my PICC line. At my lowest I was 82 lbs. I have chronic migraine, MGUS, POTS, a loop monitor in my chest for assorted cardiac arrhythmias and dysautonomia among other minor diagnoses. We changed to a focus on the quality of my life a number of months ago and since I am still pursuing treatment, palliative care was deemed most appropriate. Thank you for being part of our journey. We will keep you posted! I have nursing at home twice a week and an incredibly supportive family and spiritual community. Most of all, I have a God who will never leave me and who has secured my future. I cannot speak to the value of that with mere words. It is priceless.