tag:blogger.com,1999:blog-4863417462909147257.post6510334666638968334..comments2024-01-01T20:33:52.554-08:00Comments on a moon, worn as if it had been a shell: PalimpsestElizabethhttp://www.blogger.com/profile/03313726816776097840noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-4863417462909147257.post-90857890151198304022016-10-20T16:09:11.114-07:002016-10-20T16:09:11.114-07:00This: We are unwitting Bodhisattvas.
For sure, fo...This: We are unwitting Bodhisattvas.<br /><br />For sure, for sure. Just getting caught up on your blog. I've had to be very quick-on-quick-off with the Internet, lately, as it's causing my GERD to act up. <br /><br />Unbelievably enough, I know of another young person with a seizure disorder, also hospitalized when Sophie was, for virtually the same thing. No accidents. I feel like the current political climate is too much for the systems of some, there is a palpable anxiety and fear, that is blowing my fuses, for sure. Carrie Wilson Linkhttps://www.blogger.com/profile/01586157395539583862noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-60065894414390699792016-10-15T20:27:40.134-07:002016-10-15T20:27:40.134-07:00Please know I am among your friends supporting you...Please know I am among your friends supporting you virtually at this difficult time. Nothing like stumped doctors to shake you up. (especially the ones who pretend they've got it all figured out).<br />But why a CAT scan of the skull? And why another EEG, for which I presume Sophie is patiently sitting and being prepped? The Sound of the Silenthttps://www.blogger.com/profile/09669598042879486343noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-36280488798064990592016-10-15T13:01:22.086-07:002016-10-15T13:01:22.086-07:00Once again, I am chilled at the similarity of our ...Once again, I am chilled at the similarity of our seemingly intertwined experiences. <br /><br />Nicholas has been suffering from a severe rash of unknown origin for now almost a full year. Urticaria, they said, which is, as you know, just another fancy word for "we have no f-ing idea". <br /><br />We saw dermatologists, allergists, endocrinologists, neurologists and the like. He was hospitalized 3 times with teams and teams of Harvard grads scratching their heads, shrugging their shoulders and telling me how brave I was....choke, cough, gag. <br /><br />After several EEG's (Nick has ESES) and many months of trying everything...from expensive creams, antihistamines and Tums, I began to see a connection between Nick's bouts of constipation and hive flare-ups. He became so constipated from all the antibiotics and antihistamines that his digestive system almost came to a complete stop and we were forced to use the dreaded enema. <br /><br />Surprisingly however, after these treatments, his rash seemed to improve. He was much better. Nick's gastro has always spoken of the important brain/gut connection that most physicians fail to recognize since they all "specialize" in only one area of expertise. <br /><br />We began to work with the "complex care team" at Children's who were very helpful in getting all of the physicians talking to one another. I have discovered that the "Harvard elite" may be high on intelligence and expertise, but most lack plain old common sense. <br />Nick is now scheduled for another 3 day hospital stay for tests to see if he is potential candidate for an appendicostomy but more on that later. <br /><br />I recognize your battle fatigue, it is an old friend of mine, especially after long hospital stays. I marvel at the words you use to describe this overwhelming monster.<br /><br />You are so fortunate to have such an outpouring of love and support that will always be there to fill your soul and soothe your spirit. Please know that I am one of them. L. Petershttps://www.blogger.com/profile/09495560962339948104noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-53933185506768165942016-10-15T11:24:39.530-07:002016-10-15T11:24:39.530-07:00I sit, mouth agape, at the wonder of your writing....I sit, mouth agape, at the wonder of your writing.Tarahttps://www.blogger.com/profile/03052375488090209961noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-19152650560195798662016-10-15T10:40:02.846-07:002016-10-15T10:40:02.846-07:00My God, Elizabeth, this is stunning writing, a poe...My God, Elizabeth, this is stunning writing, a poem, a cry, and raised fist, shaking, resisting, chasing down meaning. I am in awe of you, of this walk you make with your children, and I am glad you do not let it go. 37paddingtonhttps://www.blogger.com/profile/12400464105403622384noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-75875886027720185852016-10-15T07:22:04.236-07:002016-10-15T07:22:04.236-07:00Elizabeth, you lay out the truth here in writing t...Elizabeth, you lay out the truth here in writing that dazzles and also slices through to bone. I am continually in awe of every word, and of the life behind the writing. T. https://www.blogger.com/profile/16509409207991963533noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-31533175373752496272016-10-14T20:17:28.370-07:002016-10-14T20:17:28.370-07:00How can it be otherwise? Sending love.How can it be otherwise? Sending love.Denise Emanuel Clemenhttps://www.blogger.com/profile/10982725113569943337noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-32380057726727876102016-10-14T19:30:51.129-07:002016-10-14T19:30:51.129-07:00I used to describe Miel's situation as involun...I used to describe Miel's situation as involuntary enlightenment. As for resistance, a Chinese doctor once told me when people struggle and resist instead of accepting, it meant change is possible.Ahttps://www.blogger.com/profile/06318174928862120631noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-90555660552786438292016-10-14T18:41:33.309-07:002016-10-14T18:41:33.309-07:00She looks so patient, as if she is at the salon an...She looks so patient, as if she is at the salon and they are doing her hair in dreadlocks, hence all the colorful little beads. Resigned to the boredom of it all.<br /><br />No, I never thought for one second that you would let it go, would let anything go. But I hope something comes that helps you to stop thinking, for awhile.livhttps://www.blogger.com/profile/00091094639074377780noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-17692238084549840602016-10-14T16:33:46.697-07:002016-10-14T16:33:46.697-07:00I'm on my third glass of wine (been watching t...I'm on my third glass of wine (been watching the "trumpalumpadumpa" news so I'll have to come back and read this when I sober up. I will say that Sophie doesn't look like she's buying what neuro, etc had to offer.<br /><br />Best,<br />BonnieFrom the Kitchenhttps://www.blogger.com/profile/00789641912016566894noreply@blogger.com