Hello friends and family, it is with deep regret and a heavy heart that I write these words. This ma
Hello friends and family, it is with deep regret and a heavy heart that I write these words. This may be the hardest thing I have written in my entire life. As many of you know I have struggled for the past 5 years with complications of Ehlers Danlos syndrome, a genetic connective tissue disorder. In June, I was hospitalized when my entire digestive system shut down and I am now fed with intravenous nutrition (TPN). I had hoped that this would give me quality of life and help me accomplish more things and enjoy my time. However, an inherent risk of TPN is infection. I have been hospitalized with a blood stream infection 4 times in the last five months. During my most recent hospitalization, I decided with the help of my family and close friends that my body could not go on like this. I have chosen to stop treatment for these infections and go on hospice. My body simply cannot continue like this, nor do I really have any quality of life. I am not living I am simply existing. I want to make the most of the time I have left by spending it with all of you. The timing of when things will start happening is very unclear but it will be fairly soon. Don’t hesitate to contact me to see if we can find a way to see each other one more time.I want you to know that this was A very difficult decision for me to make and that I love all of you very much. Thank you for being there, giving me support, lending a hand, and showing me kindness. I would have not made it this far without all of you. I love you so so so much. I hope we all meet again someday.#digestivetractparalysis #hospice #gastroparesis #ehlersdanlossyndrome #endoflife #death — view on Instagram https://ift.tt/2PRhcKR -- source link
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