tag:blogger.com,1999:blog-4863417462909147257.post8671370912909614195..comments2024-01-01T20:33:52.554-08:00Comments on a moon, worn as if it had been a shell: The Quarterly Tiny Little Mother Mind™ ReportElizabethhttp://www.blogger.com/profile/03313726816776097840noreply@blogger.comBlogger58125tag:blogger.com,1999:blog-4863417462909147257.post-55208541834990588752016-05-03T00:12:18.917-07:002016-05-03T00:12:18.917-07:00A new reader. I will stick around to read more ab...A new reader. I will stick around to read more about Sophie!Lisa Mhttps://www.blogger.com/profile/13555434600770366988noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-62953511467610279862016-01-11T18:56:26.716-08:002016-01-11T18:56:26.716-08:00If all the doctors that were "on the fence&qu...If all the doctors that were "on the fence" or silently supportive would step forward and speak up, wouldn't that make a difference? Anonymoushttps://www.blogger.com/profile/17533205834950854358noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-11878853371555908322016-01-09T10:45:57.079-08:002016-01-09T10:45:57.079-08:00Ha! If I had a nickel for every time I consoled my...Ha! If I had a nickel for every time I consoled myself with the "good fodder for writing" notion... Sometimes, that is all the silver lining that is available in the moment.<br /><br />You have absolutely hit a nerve. I wonder how most physicians would feel if they realized that their inability to be curious about their patients' experiences and "anecdotal evidence" (God, how I hate that phrase and the way it is casually and disdainfully dismissed as if it were a steaming turd on the table) inhibited the doctor-patient relationship. Every time I take my girls to the doctor I have to weigh the consequences of being brutally honest about the research I've done and our experiences and the practicality of being noted in the chart as "combative" or "unwilling to consider treatment." <br /><br />On a positive note, I think you should know that I think your writing talent and unique perspective on the world means that everything is good fodder for writing. I am so pleased that I get to read your words on a regular basis.kariohttps://www.blogger.com/profile/10150537989886423212noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-13108471203469266422016-01-08T23:09:13.509-08:002016-01-08T23:09:13.509-08:00Yeah. I feel, at worst, a quiet despair. At best, ...Yeah. I feel, at worst, a quiet despair. At best, I'm resigned. But it sure makes good fodder for writing. Apparently, I've hit a nerve here -- I'm sort of overwhelmed and gratified by the responses!Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-39156424813034557822016-01-08T23:08:03.443-08:002016-01-08T23:08:03.443-08:00I wonder about that, too. I imagine it's not w...I wonder about that, too. I imagine it's not what they'd imagined when they first had aspirations to be a doctor.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-37484213493148001972016-01-08T23:07:25.655-08:002016-01-08T23:07:25.655-08:00Thanks, Donna. Maybe I'll see you out there an...Thanks, Donna. Maybe I'll see you out there and we can paddle together.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-29465335757090081192016-01-08T23:06:51.197-08:002016-01-08T23:06:51.197-08:00Clever, clever!Clever, clever!Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-55882563486154343522016-01-08T23:06:34.609-08:002016-01-08T23:06:34.609-08:00Exactly. And yes. I'm pretty much resigned to ...Exactly. And yes. I'm pretty much resigned to it.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-77310128644619023902016-01-08T09:49:54.853-08:002016-01-08T09:49:54.853-08:00I am in awe of your ability to say your piece and ...I am in awe of your ability to say your piece and then sit quietly while they ignore it. I can't imagine not stopping the neurologist and pointing out the absurd facts for her in plain terms, even though I am certain it would change nothing and only result in me being branded an obnoxious mother who is combative. And then I would implode. And then they would lead me away in handcuffs and start proceedings to make my child a ward of the state because I certainly was not fit to raise her. Fuck. Fuckity-fuck. <br /><br />I am SO happy that the cannabis is working, whether or not anyone in The Medical Establishment bothers to ask you about it. Love.kariohttps://www.blogger.com/profile/10150537989886423212noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-59217994212813644642016-01-08T05:32:36.790-08:002016-01-08T05:32:36.790-08:00Sorry that you and Sophie have to go through such ...Sorry that you and Sophie have to go through such unpleasant "drill" for no reason other than to have drug prescriptions and insurance forms filled! I do wonder how the neurologists assess their work and commitment to medicine after these kinds of visits.Francescahttps://www.blogger.com/profile/01316361078052416731noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-30010370117123935862016-01-07T23:39:09.223-08:002016-01-07T23:39:09.223-08:00As always, I read your words and say "Amen, S...As always, I read your words and say "Amen, Sister!" I was just thinking today that in less than a year I will be able to say, with sorrow and pride, that I've been "rowing through the shitty" for a quarter of a century. Wow. So nice to feel like I'm not alone in my journey.<br />Donnahttps://www.facebook.com/donna.m.rayfordnoreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-62080182558484738332016-01-07T20:53:34.666-08:002016-01-07T20:53:34.666-08:00But can a bus is so int a restingBut can a bus is so int a restingAnonymoushttps://www.blogger.com/profile/10818795902981871173noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-58791095812578744322016-01-07T06:54:32.043-08:002016-01-07T06:54:32.043-08:00I have also had some infuriating encounters with d...I have also had some infuriating encounters with doctors treating my daughter but yours is a strange one. There was no overt rudeness, belittlement, discouragement or crassness. But being ignored - as you were both by the nurse measuring blood pressure and by the doctor who wasn't the slightest bit interested in your cannabis and drug weaning results - is equally distressing. Here's a bundle of commiseration from across the miles.The Sound of the Silenthttps://www.blogger.com/profile/09669598042879486343noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-52650483827969907372016-01-06T22:21:48.592-08:002016-01-06T22:21:48.592-08:00Sounds good. Thank you for reporting back!Sounds good. Thank you for reporting back!Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-22227087959808902332016-01-06T22:21:06.039-08:002016-01-06T22:21:06.039-08:00Thank you for reminding me of that again, Birdie! ...Thank you for reminding me of that again, Birdie! I had forgotten. It's so very true. I am definitely moonstruck and certainly mad. I am glad that you are drugged and hope that you're recovering nicely!Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-56490037301777603672016-01-06T22:20:10.297-08:002016-01-06T22:20:10.297-08:00I'll adopt that expression right now.I'll adopt that expression right now.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-11053491872789265092016-01-06T22:19:41.317-08:002016-01-06T22:19:41.317-08:00All is well, Liv. Thank you, as always, for your k...All is well, Liv. Thank you, as always, for your kind thoughts and words. They sustain me!Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-45224385187074178862016-01-06T22:19:05.340-08:002016-01-06T22:19:05.340-08:00Yes, absolutely.Yes, absolutely.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-12492602007041821712016-01-06T22:18:39.826-08:002016-01-06T22:18:39.826-08:00Hmmm. Not sure what your comment means?Hmmm. Not sure what your comment means?Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-3501645241613808392016-01-06T21:49:55.557-08:002016-01-06T21:49:55.557-08:00No thank you.No thank you.Maggie Worldhttps://www.blogger.com/profile/12578683202372124444noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-14953654346603382892016-01-06T18:04:54.377-08:002016-01-06T18:04:54.377-08:00My maybe generous guess is that she can't talk...My maybe generous guess is that she can't talk about it. Our whole team at Radys has been instructed to help w weans but no dosing! And that's what amazes me. That these brilliant people can't seem to think for themselves or challenge a system that prevents them from thinking. I mean COME ON. I dosed the CBD the same way I did the Keppra and Depakote. And the best part, it actually doesn't take a genius to heal epilepsy. It takes a plant and a mother.Allison Ray Benavideshttps://www.blogger.com/profile/10513628963796782490noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-20643749089842208682016-01-06T17:00:21.925-08:002016-01-06T17:00:21.925-08:00Glad the trip was so good, the pictures of your fa...Glad the trip was so good, the pictures of your family are heartwarming. Glad it's safely back too - but back to this same shit? no, no gladness for that.<br /><br />Praying for the day that one of them really take a quite moment and listen to you and respond with interest, you know, that leaning forward - tell me more kind of thing. Holding on to faith and loving you for that, ever Elizabeth, "cope with this shit" attitude. I would have wanted to, not too loudly but enough to shake her up...scream at that nurse, but that's just me - you are a far better woman. Hope you have something nice planned so that this reentry isn't so hard. livhttps://www.blogger.com/profile/00091094639074377780noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-82765027851284277082016-01-06T13:39:29.093-08:002016-01-06T13:39:29.093-08:00Actually, it went very well. Took detailed notes ...Actually, it went very well. Took detailed notes of seizure reduction and where we got oil from (not sure if she wanted to make sure if it was reputable or if she was passing along the info to others...), and then stated, "Unfortunately I can't prescribe the cannabis for you yet." I was shocked. I'm always ready for a veiled threat. Asked if I was content with everything, did we need anything, etc., and that was that. She did NOT check his reflexes! haAnonymoushttps://www.blogger.com/profile/17533205834950854358noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-83925392159684998752016-01-06T10:48:18.882-08:002016-01-06T10:48:18.882-08:00thank goodness you had a lovely respite in Yosemit...thank goodness you had a lovely respite in Yosemite. Now you're back in the bloody trenches. My go-to humor phrase when dealing with medical personnel: fook the fookin' fookers. Carry on, E.Tarahttps://www.blogger.com/profile/03052375488090209961noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-37208557173990245782016-01-06T09:04:51.078-08:002016-01-06T09:04:51.078-08:00Keep reminding yourself of that quote. "All p...Keep reminding yourself of that quote. "All pioneers are considered to be afflicted with moonstruck madness." You are a pioneer here and one day these Very Intelligent doctors will just take for granted that Cannabis works. Many years ago it was considered bad to have a clean surgical unit. Now nobody would dare argue that. Because someone out there kept declaring it right while getting ignored over and over. <br />It will happen for you. It will! (And I feel so silly this morning because of my own drugged brain. Hoping this makes sense.)Birdiehttps://www.blogger.com/profile/03479872783727855901noreply@blogger.com