First post: Feb 11, 2020 Latest post: Aug 8, 2022
In 2015 I began my journey down the rabbit hole and have been primarily bed-bound for several years. 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 still don’t understand. I can drink by mouth now, as well as eat simple foods, for which I’m grateful! I still have the J-tube to take medications that I can’t swallow. At my lowest I was 82 lbs, had a PICC line and was being fed IV TPN every day. I had a nurse who took care of me 3 times a week. I barely survived a very serious month-long bout of Sepsis for which we’re grateful. I battle chronic migraine, MGUS, POTS, have a loop monitor in my chest to track assorted cardiac arrhythmias and have dysautonomia among other minor diagnoses. We changed to a focus on the quality of life two years ago and I was placed on palliative care, which has improved my health as well as my comfort! Thank you for being part of our journey. We will keep you posted! I have an incredibly supportive family, a faithful husband who acts as my primary caregiver, fabulous kids, and spiritual community that spans the globe. Most of all, I have Jesus. He will never leave me and has secured my future. I cannot speak to the value of that with mere words. It is priceless. As are your prayers. It doesn’t seem that long ago that I had an athletic, busy life in ministry with my family and church. Everything is different now. I am deeply comforted knowing my Savior is SO well acquainted with suffering and promises that, “momentary, light affliction is producing for me an eternal weight of glory far beyond all comparison. (2 Cor. Ch. 4) YAY for that, for me, my family, and for all who are suffering. Take heart, it is not without reward in the time to come, for those who know and love God. I love you all and thank you for everything you are to us, have been, and are yet to be. Blessings upon you and all who you love ❤️

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