tag:blogger.com,1999:blog-4863417462909147257.post6480969911400814295..comments2024-01-01T20:33:52.554-08:00Comments on a moon, worn as if it had been a shell: An Open Letter to The Neurologist and Those Like HerElizabethhttp://www.blogger.com/profile/03313726816776097840noreply@blogger.comBlogger23125tag:blogger.com,1999:blog-4863417462909147257.post-79785964301083893562017-09-11T15:28:18.002-07:002017-09-11T15:28:18.002-07:00This may very well be (without having read your wr...This may very well be (without having read your writing I am at risk here but this was STELLAR)one of the most important things you've ever written. i say that because beyond your breathtaking ability to speak frankly and cuttingly to the point- this was honest. Brave. Out there. Honor to have made your acquaintance girl. jacquelinehttps://www.blogger.com/profile/10056411434561012994noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-14072837754992017522017-07-20T09:17:07.921-07:002017-07-20T09:17:07.921-07:00You're a hero, and are changing the landscape ...You're a hero, and are changing the landscape of the system, bit by excruciating bit. Thank you.Carrie Wilson Linkhttps://www.blogger.com/profile/01586157395539583862noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-21851111076974203422017-07-18T07:55:05.140-07:002017-07-18T07:55:05.140-07:00I do Hope that you have not taken down your most r...I do Hope that you have not taken down your most recent Post of your experience with the Systems of Care due to backlash from the Trolls that attempt to stifle the voices of those who speak Truth and are bold enough to name drop? When neg comments are made under the cover of anonymity I am always suspicious of who is behind that screen and their Agendas. If one's opinions are thought important enough to weigh in... own them with their true identity... if boldness can only come while hiding behind anonymity it is a cowardly ruse. Big Hugs. Bohemianhttps://www.blogger.com/profile/03743017084098726581noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-50309764615130338032017-07-15T04:04:23.146-07:002017-07-15T04:04:23.146-07:00Did your (former) neurologist ever explain why she...Did your (former) neurologist ever explain why she had said that thing about not being allowed to discuss the cannabis treatment with you? Or did she deny ever saying it? Elsewherehttps://www.blogger.com/profile/18205062128898300234noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-51615922107115167292017-07-14T21:51:39.070-07:002017-07-14T21:51:39.070-07:00Thanks! I will stop by periodically.Thanks! I will stop by periodically.Specialkhttps://www.blogger.com/profile/08964977886171074154noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-63660413929279498492017-07-14T20:53:28.810-07:002017-07-14T20:53:28.810-07:00Dear Specialk -- thank you so much for your though...Dear Specialk -- thank you so much for your thoughtful reply and for sharing your experiences with us here. I applaud you for your self-advocacy and hope that things go well or improve with your other chronic health issue. Like I said in the letter, I try now to NOT have expectations that our doctors, or anyone really who is trained in the western traditional way to do anything out of the ordinary. Medicine, it seems, like nearly everything else in this country, has become increasingly commodified -- it's just another business with us as "consumers." Sigh. Thanks again for coming here and reading and sharing a bit of your own life with us. I hope you'll come back!Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-69451499779628961832017-07-14T20:17:47.095-07:002017-07-14T20:17:47.095-07:00I came to this, via our mutual friend, Carl. I am ...I came to this, via our mutual friend, Carl. I am in awe of both your writing and *especially* your tenacity on behalf of your daughter. I wanted to tell you a little of my story. I do so, to explain how, from a considerably different history, I can still very much empathise with what you are feeling; regarding the state of medicine, in general, and that one neurologist, in particular.<br /><br />I am someone who has been able to lead a fairly normal life, despite a diagnosis of epilepsy at age 10. (I turn 67 on Sunday) I am fortunate that I have had very infrequent seizures over the years. In fact, I went without medication, from age 18 until age 32, because my seizures had been so infrequent. Also, my infrequent seizures almost invariably occurred when I was ill or there was some other fairly definitive trigger.<br /><br />Unfortunately, I had a seizure, while undergoing an unrelated diagnostic medical procedure, in 1982, so I was promptly sent to my HMO's neurologist. Predictably, I was back on medication and I have been taking medication, ever since… and been dealing with various side-effects and questionable efficacy, ever since.<br /><br />As in childhood, I have had very infrequent seizures (l or 2 per year, sometimes even less). That is, until 2009. I began experiencing multiple seizures and/or clusters of auras on a single day. Most frequently it began at night, when I'd awaken with severe heartburn and pain in the upper GI area. It was unlike anything I had ever experienced and was more frightening than at any time, since my first seizure at age 10.<br /><br />My neurologist decided to change my medication, since he knew the one I was taking, once again, caused double-vision when he increased the dose… just like the several times he had previously tried to increase the dosage in response to a seizure or two. We went through several different meds, with little improvement and various side-effects. Meanwhile, he basically ignored my mention of the nighttime triggering events.<br /><br />It happened, that I had a colonoscopy and endoscopy during that time, and an acute stomach ulcer was discovered. I brought that to the attention of my neurologist, but he still ignored my thought that there might be a connection. Yet, it wasn't until the ulcer began to heal, that the seizures became dramatically less and less frequent. My neurologist remained convinced the waning frequency of seizures was solely because he had finally landed on a medication that "worked" for me.<br /><br />I have been seizure free, now, for over 5 years (my longest seizure-free stretch by far). Yet, right until the day he informed me that he was, "no longer in the seizure control business," and told me I needed to find a new neurologist; he was insistent that it was the medication that had turned the tide. I have only seen my new neurologist once. I asked about perhaps weaning off the medication. She decided, however, that since it didn't appear to be causing any side-effects and it is a fairly low dose, that it would be "safer" for me to remain on the med. Reminded that driving privileges are always potentially at risk, I really couldn't argue with her. It is not a horrendous situation, but neither is it comforting to know that I am effectively forced to take a medication, that may not be providing any benefit, whatsoever.<br /><br />I am inspired by your intrepid advocacy. I am dealing with another chronic health issue, which has also put me at odds with some physicians and their "conventional wisdom," as I try to find solutions. Your letter reminded me to remain my own fierce advocate; to not bow to their "superior" knowledge, when my body and my experience is telling me something very different from what they can surmise during a 20-minute appointment.<br /><br />Specialkhttps://www.blogger.com/profile/08964977886171074154noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-57274107814737813912017-07-14T16:26:58.413-07:002017-07-14T16:26:58.413-07:00Why is this the norm? Why do physicians have to al...Why is this the norm? Why do physicians have to always be on a pedastal and act like their word is God?<br />Why?<br />This is a profession that is supposed to be based on compassion and helping others. Does it make doctors feel good that they have this "power" over everyone?<br />Is it the money? Are they obligated to the corrupt pharma ceutical industry?<br />You can answer, Mike you are retired now. Be honest, you chose this profession. Used to be doctors actually cared.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-32530232549438724122017-07-14T06:00:44.447-07:002017-07-14T06:00:44.447-07:00Risk Managment Department has be loling and rollin...Risk Managment Department has be loling and rolling my eyes right out of my head. <br /><br />I just spoke to a mom: they told her No to cannabis due to lack of research and then added a 4th medication and are pushing them toward surgery. She told me she doesn't feel like she has a choice. <br /><br />SHE DOESNT FEEL LIKE SHE HAS A CHOICE. <br /><br />I assured her she does and that her neuro will be able to provide ZERO rational or evidence for what he is doing. <br /><br />What does risk management have to say about THAT? <br /><br />We live in the upside down. So grateful to be here with you and Sophie.Allison Ray Benavideshttps://www.blogger.com/profile/10513628963796782490noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-10687370097023524282017-07-13T13:43:26.583-07:002017-07-13T13:43:26.583-07:00"There has not been a single instance where a..."There has not been a single instance where a drug or treatment recommended by a neurologist in over two decades has really helped my daughter." BOOM!<br /><br />Excellent letter, Elizabeth. You were rational and presented your case with such intelligence and strength. I will be interested to hear how the doctor responds, if at all, and I hope the letter moves "up the chain" in the hospital so other providers can consider its implications.<br /><br />I'm especially glad that you called the doc out on that obvious lie. It's one thing to say you won't discuss cannabis because it's unresolved science or because you're not comfortable with it as a doctor, but another entirely to blame it on your boss! What a cowardly thing to do.Steve Reedhttps://www.blogger.com/profile/11684120060438252945noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-85194259479600699262017-07-13T11:42:24.393-07:002017-07-13T11:42:24.393-07:00Wow! Powerful! Beautifully done!Wow! Powerful! Beautifully done!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-55757423491936007352017-07-13T10:56:55.903-07:002017-07-13T10:56:55.903-07:00This is a powerful statement, Elizabeth, and I app...This is a powerful statement, Elizabeth, and I applaud you for sending it. The lie she told was the most damning thing of all, worse, even, than her unwillingness to learn. As you say, she broke a sacred trust. I shudder to think that others will go to her, not knowing how closed she is, how unable to imagine a different way. I'm so glad you've moved on to a doctor who has Sophie's best interests at heart, and who is open to learning. 37paddingtonhttps://www.blogger.com/profile/12400464105403622384noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-62860660090721564652017-07-13T09:17:17.487-07:002017-07-13T09:17:17.487-07:00I read this letter and think BRAVO!! I too have a ...I read this letter and think BRAVO!! I too have a child who has epilepsy which started at 3 months of age, the neuro doctor is pushing surgery as the only option... added bonus...I live in Utah. Even though I have a Hemp Regestry card for my daughter I have no way of getting medical strength OIL or guidance for treatment for her....I'm madder then heck! Anonymoushttps://www.blogger.com/profile/00380872150072992761noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-382686005606063672017-07-13T02:12:58.452-07:002017-07-13T02:12:58.452-07:00Perhaps one day more Physicians will be more open ...Perhaps one day more Physicians will be more open minded about what WORKS for Patients and promotes Wellness, rather than what can most be profited from... until that day I remain suspicious of Western Medicine in general. That said, there are Thankfully some Wonderful Physicians who are courageous enough to have an Open Mind and desire to do exploration to learn whatever they can about what is showing a Positive Track Record in the Care of those with incurable illnesses and disability... even if their colleagues don't or refuse to. Bohemianhttps://www.blogger.com/profile/03743017084098726581noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-8271064302208375712017-07-12T17:35:39.903-07:002017-07-12T17:35:39.903-07:00You are a marvelous human being. You were polite, ...You are a marvelous human being. You were polite, professional, and tried to educate the Dr. I am in awe.Sheilahttps://www.blogger.com/profile/07060104462984070700noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-66061480643572041132017-07-12T16:17:53.629-07:002017-07-12T16:17:53.629-07:00Wow ���� brilliantly written. And good for you. Yo...Wow ���� brilliantly written. And good for you. Your tiny little mother mind is on fire. I think Sophie is a lucky young woman to have been born to you and yours. It really pains me that you have had to endure this horrid bullshit. It tears at my heart that many doctors and this country are in this condition. I love you.Joannehttps://www.blogger.com/profile/08015888228309968515noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-54711287485787688802017-07-12T16:01:19.056-07:002017-07-12T16:01:19.056-07:00As a retired physician, I applaud your letter, and...As a retired physician, I applaud your letter, and encourage you and others to do the same. Alas, it's not an outlier, it's more the norm. I'm sorry to say. <br />Best,<br />MikeShould Fish Morehttps://www.blogger.com/profile/13038376492887695725noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-88696000185615507162017-07-12T15:39:24.262-07:002017-07-12T15:39:24.262-07:00Every word of that. Every word of that. Jillhttps://www.blogger.com/profile/06671446238805535547noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-73414152181160769432017-07-12T14:13:51.320-07:002017-07-12T14:13:51.320-07:00After reading this I was moved to tears by your el...After reading this I was moved to tears by your eloquence and honesty. Having dealt with neurologists (maybe even THE NEUROLOGIST) when my own daughter was ill I was stunned by their narrow-mindedness and their unwillingness to learn about holistic alternatives. BRAVO, dear Elizabeth. Your letter is a clarion call to a profession deeply mired in its own BS. Whether THE NEUROLOGIST reads this, your roar will be heard far and wide. <br />Love, Linda Anonymoushttps://www.blogger.com/profile/05444418084581324683noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-42796006536349015372017-07-12T13:30:04.674-07:002017-07-12T13:30:04.674-07:00Dear Elizabeth, I salute you. You have done someth...Dear Elizabeth, I salute you. You have done something great here and I ask you to share it widely. Much wider than you may imagine right now. Sabinehttps://www.blogger.com/profile/09015827501648296977noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-69465951540661713872017-07-12T13:03:06.343-07:002017-07-12T13:03:06.343-07:00You, my friend, are a lion. Your roar is loud, pur...You, my friend, are a lion. Your roar is loud, pure, and true. We should all be so lucky to have you in our corner if need be. Brava, and Elizabeth, I am more than a little in awe of your ability to communicate an idea through writing. You. Leave. Me. Breathless.<br />Love<br />RebeccaRadish Kinghttps://www.blogger.com/profile/06534752971317927559noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-69699526062760596652017-07-12T12:45:55.982-07:002017-07-12T12:45:55.982-07:00Damn straight. She could have learned so much from...Damn straight. She could have learned so much from you and Sophie and she chose to hide. I hope she reads this letter over and over again and chooses to move forward in a different way. Good for you for taking the time to send this. kariohttps://www.blogger.com/profile/10150537989886423212noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-19372918633558612482017-07-12T12:37:43.926-07:002017-07-12T12:37:43.926-07:00Mic. Drop. CLAP CLAP CLAP CLAP CLAP!!! Bravo!! ...Mic. Drop. CLAP CLAP CLAP CLAP CLAP!!! Bravo!! <br /><br />Good for you! I hope she read it and it made her think. Maybe she will. But when the day comes when the pharma companies are able to make a buck on CBD as treatment for epilepsy, she will remember your letter. And I believe wish she would have done more. Deanahttps://www.blogger.com/profile/10695982965264794769noreply@blogger.com