I went to Las Vegas last week with two of my colleagues to teach a seminar about starting a home health agency. If you hate Vegas and want to stop reading now--- don't! This is a good one. Not so much good as extraordinary.
During a break prior to the start of my portion of the session on Thursday morning I was approached by a gentleman who had a question regarding something one of my colleagues had said. He prefaced his question by sharing his motivation for wanting to enter the home health field. He told me he had a disabled daughter who received home care but he knew that it could and SHOULD be better. I don't know why---- I don't often share with strangers--- certainly not in a professional seminar, but I told him I have a son with intractable epilepsy. "So does my daughter" he replied.
In whispered tones in the front of the classroom he related his family's struggles over the previous 13 years. Countless medications, the diagnosis of LGS, the plummet into seizure and pharmaceutical hell. The physicians who recently told him there was nothing more they could do. The recommendation to place his beloved 13 year old daughter in hospice care. The desperation to find something to help. I was at once transfixed and horrified. My mind jumped to Charlotte and Zaki--- also placed in that hopeless, heartbreaking, hellhole of modern medicine's failures.
We whisperered breathlessly then. Me asking if he had considered Charlotte's Web CBD oil. He saying he knew about it. He was willing to move his family to Colorado. ( he shared he lived in Southern California.) He had made contact with RoC Colorado but was unclear what his wait list status was. I told him there was no need to go. Realm of Caring CA was up and running. He was unaware. Last he knew was when the center was shut down. By then I was in the I'm on a mission mode. "I will put you in touch by the end of the day!" Finally he told me that his daughter's Orange County physicians were against CBD even saying that it had done harm in some cases. No need for
me to name the hospital--- anyone in the know...knows. I said simply " you must go elsewhere".
The next hour was a flurry of activity. I did my portion of the presentation of course and then proceeded to text and email Cindy Mitchell and Ray Mirzabegian. I just had to be sure that this desperate father was thrown a life preserver. A life preserver----- a potential life SAVER for his dear daughter. It didn't take long. The preserver was tossed. A chance for healing and ultimately, perhaps saving, offered and accepted. Chris (Dad) is, so to speak, on the way to ROCCA.
Chris said he almost didn't make it to the seminar. He'd never been away from home that long and he vacillated about attending until the last moment. I texted Cindy," he came for a reason----- he just didn't know what it was".
I went to Vegas for a reason. I just didn't know what it was until I was there.
Sunday, October 12, 2014
Monday, September 15, 2014
Hey Adrian
It wasn't discipline. It was abuse. You broke his skin. You bruised him. You stuffed leaves in his mouth. You hurt your son. What could he possibly have done to deserve a beating from an NFL football player? Sorry---- that's rhetorical. Nothing. He's 4 years old. 4!!
Your team purports there is a delicate balance they must navigate regarding disciplining children. C'mon Vikings. You just got your butts kicked by the Patriots so you're putting your star back on the field next week!
Hey Adrian. Hey Vikings. I repeat. It wasn't discipline. It was abuse.
Your team purports there is a delicate balance they must navigate regarding disciplining children. C'mon Vikings. You just got your butts kicked by the Patriots so you're putting your star back on the field next week!
Hey Adrian. Hey Vikings. I repeat. It wasn't discipline. It was abuse.
Friday, September 5, 2014
The Quiet
It's so quiet after a seizure. We've all retreated to our corners. Me, in my bed, down the hall, making sure the post ictal period is a restful sleep. Well ---- I can't really " make sure"--- just hope and listen. Meaghan getting ready for work. She'll carry the image most of the day. It'll probably color her interactions, observations. Will she grow impatient with some client's whining? Maybe. Barry's reading the newspaper downstairs. He recorded the seizure in the calendar we keep. The calendar. Me: " how long since the last?". He: "three weeks". Quiet.
I read a comment on Elizabeth Aquino's post on Facebook today. It said "fuck a duck". I was so surprised. I have never heard anyone say that except for me when I am just exasperated beyond --- beyond.
Fuck a duck.
I read a comment on Elizabeth Aquino's post on Facebook today. It said "fuck a duck". I was so surprised. I have never heard anyone say that except for me when I am just exasperated beyond --- beyond.
Fuck a duck.
Friday, August 22, 2014
About Them Buckets
I like the ice bucket challenge. I'm happy that ALS is getting so much exposure. And I'm thrilled they are bringing in so much money! Do I wish that someone had thought of this for epilepsy? Sure I do. But no one did.
I watched the short video of Pete Frates, the young Boston College graduate and baseball player who got this started for ALS when he challenged a couple of friends to do the challenge ( which had been around for sometime with athletes doing it for various charities). Well---- they did it for Pete and ALS and so it went.
I just can't get worked up and cynical about this. So what if celebs are getting their mugs all over social media? So what if some people are "showing off" ? It's fun to watch for the most part and the end outcome is that it IS spreading awareness and raising more money than The ALS Foundation dared to hope for even in their wildest dreams.
ALS is horrific. It's described as a progressive neuro degenerative disease that affects nerve cells in the brain. As I often think about all the neurological disorders such as MS, Alzheimer's---- wouldn't it be wonderful to unlock the mystery of one so that perhaps we could eventually unlock the mystery of all the pathologies of the brain and cure some of these monsters?
Such as ---- epilepsy?
I watched the short video of Pete Frates, the young Boston College graduate and baseball player who got this started for ALS when he challenged a couple of friends to do the challenge ( which had been around for sometime with athletes doing it for various charities). Well---- they did it for Pete and ALS and so it went.
I just can't get worked up and cynical about this. So what if celebs are getting their mugs all over social media? So what if some people are "showing off" ? It's fun to watch for the most part and the end outcome is that it IS spreading awareness and raising more money than The ALS Foundation dared to hope for even in their wildest dreams.
ALS is horrific. It's described as a progressive neuro degenerative disease that affects nerve cells in the brain. As I often think about all the neurological disorders such as MS, Alzheimer's---- wouldn't it be wonderful to unlock the mystery of one so that perhaps we could eventually unlock the mystery of all the pathologies of the brain and cure some of these monsters?
Such as ---- epilepsy?
Monday, August 18, 2014
A Brother A Friend A Seizure
We had such a nice visit with my brother Gerry. The day after he arrived we took in a Padres game. They won! They played well. We were more than mildly surprised and especially pleased with how the current management is supporting local restaurants and breweries. We just may go again before they end the season--which will be soon given that it appears they will not get into the post season. Nope--this year the Pads are truly "Boys of Summer" (only).
The rest of Gerry's visit we explored various lunch and/or brunch spots, studied the Racing Form, went to the track and stayed up late into the night sipping (oh okay---drinking) red wine and trying to figure out the craziness going on across the world, in our own country in Ferguson and within our circle of family and friends. No solutions---just discussion.
Michael was especially looking forward to the week-end because his childhood buddy was returning home after an absence of several years. He was so looking forward to getting together. Maybe it was the late night discussion, maybe it was a restless night anticipating seeing Trevor the next day, maybe it was just the capricious nature of this stupid, vile condition. Whatever the reason , at 8:13am Sunday Michael had an unusually violent seizure. It lasted less than a minute (good) and cast a pall on the household (bad) and warranted the inevitable discussion about altering plans. I wasn't for altering. I moved a brunch reservation back a half hour and I woke Michael an hour later and filled him in about the seizure. Michael soldiered through. No seizure, no headache, no aches were going to keep him from proceeding with his day. We thoroughly enjoyed a brunch with family friends and their baby and Trevor arrived at our home later to get his friend and enjoy a day at the track. It was a good, good day. Seizure be damned!
A family dinner. Gerry's last night until he visits again in December. More wine, more discussion. A restful sleep for all.
Take that epilepsy. Take that!
The rest of Gerry's visit we explored various lunch and/or brunch spots, studied the Racing Form, went to the track and stayed up late into the night sipping (oh okay---drinking) red wine and trying to figure out the craziness going on across the world, in our own country in Ferguson and within our circle of family and friends. No solutions---just discussion.
Michael was especially looking forward to the week-end because his childhood buddy was returning home after an absence of several years. He was so looking forward to getting together. Maybe it was the late night discussion, maybe it was a restless night anticipating seeing Trevor the next day, maybe it was just the capricious nature of this stupid, vile condition. Whatever the reason , at 8:13am Sunday Michael had an unusually violent seizure. It lasted less than a minute (good) and cast a pall on the household (bad) and warranted the inevitable discussion about altering plans. I wasn't for altering. I moved a brunch reservation back a half hour and I woke Michael an hour later and filled him in about the seizure. Michael soldiered through. No seizure, no headache, no aches were going to keep him from proceeding with his day. We thoroughly enjoyed a brunch with family friends and their baby and Trevor arrived at our home later to get his friend and enjoy a day at the track. It was a good, good day. Seizure be damned!
A family dinner. Gerry's last night until he visits again in December. More wine, more discussion. A restful sleep for all.
Take that epilepsy. Take that!
Monday, August 4, 2014
Insurance Incompetence Ineptitude and So On
I like health insurance. I'm all for everyone having it. I hate the rantings about Obamacare that suggest everything was just fine until it came along. The private sector was doing just fine we are told. Well--- let me tell you---as a provider and a consumer the private sector has never gotten it right folks.
I'll take you with me on a little journey through our experiences with the insurance company my employer chose for us retirees and our dependents since January 2014. The company isn't new to the insurance business. They just happened to land the contract for my former employer.
January : Imagine our shock when we arrived at the pharmacy to pick up Michael's meds, to be told he was no longer covered on our plan. Heart palpitations, hyperventilation. Gasp! What happened? I signed Michael and Barry and I up during Open Enrollment in November 2013. I am excruciatingly detailed, timely and accurate about doing so. I KNOW the importance of insurance.
I call the insurance company concierge line. Yes, a special line just for me and thousands of others! No sign of a Michael Connolly under my name/plan. So sorry. You'll just have to contact your employer's HR Department I was told. OK. Dial. Hold. Menu. Person!!! Of course Michael Connolly is on your plan. We'll get right on that. OK. Confirmation call: it's done. This four sentence recounting took about half a day to accomplish. No matter. Done. All set.
February : Yours truly has an ophthalmology appointment to rule out glaucoma. Insurance information given. Eye clinic bills insurance company and receives notice the "plan not in effect when service provided". Eye clinic tries multiple times to straighten situation out but has to call me to explain to the insurance company I am not on Medicare as they maintain. Make no mistake. I'm not that far away from being covered by Medicare but I know the year I was born and the fact I am not eligible and I KNOW I did not receive nearly constant reminders by multiple insurance companies to
" sign up for Medicare" as my husband did last year. So....I called the insurer. Another two hours of hold, menu, hold. Person. Wait. Clarification. Account righted. Or so I thought.
May -July : Second ophthalmology appointment on May 9. July 31 I received letter from the eye clinic. " Dear Mrs. Connolly..... (Insurance co) still has not paid for the visits you had in Feb and May. They (ins co) explained you were automatically enrolled in Medicare...tried calling (ins co) three different times...tried whatever I could..... including hours on the phone with (ins co).... They said nothing else we can do and must be resolved on your end......." And on and on. They tried. I appreciate their efforts. More on this one later. Just one more little glitch.
July: received letter from insurance company informing me my dependent Barry Connolly "reached the maximum age for coverage as a minor dependent under the terms of ... Current policy. ..... coverage will be cancelled on 01/01/14! Yes, that 's the date. Yes, letter dated 7/17/14! Yes DOB under Barry's name reads October 1948. The letter goes on to explain all Barry's options now that his insurance was cancelled 7 months ago.
Today: Barry begins the process by calling the number on his cancellation letter. After holding for about 10 minutes he speaks to someone. Explains he received letter. Explains HE IS covered by Medicare since last October. Receives another number to call. Calls number. Puts phone on speaker. Hold. 20, 30, 45 minutes. Person!! Tom: "Sorry , you're not in our system at all". You'll have to straighten that out with the HR department of your wife's employer". Barry: "Let me put my wife on. She has another problem. I take the phone. I relate my billing issue. ( see Feb - June above). Me : "I do not have Medicare. Do you see my birthdate?" Tom: "Yes. You are not eligible for Medicare. Let me look at another screen. Oh yes, they did say you had Medicare. I'll have to change that and send the change to that department" . Me to Tom: " I've been through this once before Tom. No offense intended but should I be talking to someone with more authority?" Tom assures me he's taking care of this as we speak. I hear the click , click , click. Is that his computer keys? Or is he just pretending to fix my problem as in that commercial. I almost laugh. We spend another ten minutes Tom assuring me he'd make this happen. Me obtaining his phone number and extension. Tom remembers something : "oh if you call after next Friday I'll be on vacation for a month" . I encourage you to get to know one of our other representatives. Anything else can I do for you today? " Whaaaat?
Almost the end I promise. So by now I am starting to doubt myself just a teeny bit. I go to my former employers website and look up my family's health coverage. Under Michael: Medical-Yes. Dental-Yes. Medicare-No. Under Barry: Medical-Yes. Dental-Yes. Medicare-Yes. I briefly describe our situation and look forward to them intervening with the insurance company.
Curiosity propelled me to look up the salary of my nonprofit insurance company's CEO. Last year: a cool 4.2 mil. BS! Pun intended.
I'll take you with me on a little journey through our experiences with the insurance company my employer chose for us retirees and our dependents since January 2014. The company isn't new to the insurance business. They just happened to land the contract for my former employer.
January : Imagine our shock when we arrived at the pharmacy to pick up Michael's meds, to be told he was no longer covered on our plan. Heart palpitations, hyperventilation. Gasp! What happened? I signed Michael and Barry and I up during Open Enrollment in November 2013. I am excruciatingly detailed, timely and accurate about doing so. I KNOW the importance of insurance.
I call the insurance company concierge line. Yes, a special line just for me and thousands of others! No sign of a Michael Connolly under my name/plan. So sorry. You'll just have to contact your employer's HR Department I was told. OK. Dial. Hold. Menu. Person!!! Of course Michael Connolly is on your plan. We'll get right on that. OK. Confirmation call: it's done. This four sentence recounting took about half a day to accomplish. No matter. Done. All set.
February : Yours truly has an ophthalmology appointment to rule out glaucoma. Insurance information given. Eye clinic bills insurance company and receives notice the "plan not in effect when service provided". Eye clinic tries multiple times to straighten situation out but has to call me to explain to the insurance company I am not on Medicare as they maintain. Make no mistake. I'm not that far away from being covered by Medicare but I know the year I was born and the fact I am not eligible and I KNOW I did not receive nearly constant reminders by multiple insurance companies to
" sign up for Medicare" as my husband did last year. So....I called the insurer. Another two hours of hold, menu, hold. Person. Wait. Clarification. Account righted. Or so I thought.
May -July : Second ophthalmology appointment on May 9. July 31 I received letter from the eye clinic. " Dear Mrs. Connolly..... (Insurance co) still has not paid for the visits you had in Feb and May. They (ins co) explained you were automatically enrolled in Medicare...tried calling (ins co) three different times...tried whatever I could..... including hours on the phone with (ins co).... They said nothing else we can do and must be resolved on your end......." And on and on. They tried. I appreciate their efforts. More on this one later. Just one more little glitch.
July: received letter from insurance company informing me my dependent Barry Connolly "reached the maximum age for coverage as a minor dependent under the terms of ... Current policy. ..... coverage will be cancelled on 01/01/14! Yes, that 's the date. Yes, letter dated 7/17/14! Yes DOB under Barry's name reads October 1948. The letter goes on to explain all Barry's options now that his insurance was cancelled 7 months ago.
Today: Barry begins the process by calling the number on his cancellation letter. After holding for about 10 minutes he speaks to someone. Explains he received letter. Explains HE IS covered by Medicare since last October. Receives another number to call. Calls number. Puts phone on speaker. Hold. 20, 30, 45 minutes. Person!! Tom: "Sorry , you're not in our system at all". You'll have to straighten that out with the HR department of your wife's employer". Barry: "Let me put my wife on. She has another problem. I take the phone. I relate my billing issue. ( see Feb - June above). Me : "I do not have Medicare. Do you see my birthdate?" Tom: "Yes. You are not eligible for Medicare. Let me look at another screen. Oh yes, they did say you had Medicare. I'll have to change that and send the change to that department" . Me to Tom: " I've been through this once before Tom. No offense intended but should I be talking to someone with more authority?" Tom assures me he's taking care of this as we speak. I hear the click , click , click. Is that his computer keys? Or is he just pretending to fix my problem as in that commercial. I almost laugh. We spend another ten minutes Tom assuring me he'd make this happen. Me obtaining his phone number and extension. Tom remembers something : "oh if you call after next Friday I'll be on vacation for a month" . I encourage you to get to know one of our other representatives. Anything else can I do for you today? " Whaaaat?
Almost the end I promise. So by now I am starting to doubt myself just a teeny bit. I go to my former employers website and look up my family's health coverage. Under Michael: Medical-Yes. Dental-Yes. Medicare-No. Under Barry: Medical-Yes. Dental-Yes. Medicare-Yes. I briefly describe our situation and look forward to them intervening with the insurance company.
Curiosity propelled me to look up the salary of my nonprofit insurance company's CEO. Last year: a cool 4.2 mil. BS! Pun intended.
Hey Roger
Roger Goodell states, "The league is an entity that depends on integrity and in the confidence of the public..." Per Merriam- Webster integrity: "Firm adherence to a code of especially moral or artistic values".
Well Roger, as a member of the public that you depend on and as a woman---you know-- that segment of the public you want to attract more to your game/league----THIS woman has little confidence that you actually value integrity before--- well--- let's see--- the health and well- being of your players who are routinely sent back on the field post concussion or injury; or the health status of countless retired players who have physical, mental and emotional issues ranging from loss of memory, seizures, depression, suicide and multiple severe and debilitating physical ailments. It took years and lengthy and costly legal haggling to get the league to assume any responsibility for these unfortunate outcomes and even then, not nearly enough to account for the suffering and loss of life! It's a well known fact that players are routinely injected with Toradol before games so they can play pain free through their injuries. After all, what value are they on the side lines? It's not a narcotic. It's legal. Therefore it's okay. Integrity?
And now Ray Rice. While we don't know for sure exactly what went down in that casino elevator most of us out here in the public that you depend on believe an NFL trained and conditioned football player knocked a woman around then dragged her limp body out of that elevator seemingly without regard. In the court of public opinion Roger you are being slammed because the measly 2 game suspension SEEMS to send a message that in the scheme of things (domestic abuse-wise) if it's a first offense and you're thought of as a "good guy" you'll get off a little lighter in your system that you claim strives for "consistency" in the fines and suspensions (sentences) that you the commissioner (judge) hand down.
The list goes on and on about incidents off the field of play. Ray Rice's woman- bashing will be replaced by the next shooting, murder, DUI or domestic violence case. Integrity? Nah.
Well Roger, as a member of the public that you depend on and as a woman---you know-- that segment of the public you want to attract more to your game/league----THIS woman has little confidence that you actually value integrity before--- well--- let's see--- the health and well- being of your players who are routinely sent back on the field post concussion or injury; or the health status of countless retired players who have physical, mental and emotional issues ranging from loss of memory, seizures, depression, suicide and multiple severe and debilitating physical ailments. It took years and lengthy and costly legal haggling to get the league to assume any responsibility for these unfortunate outcomes and even then, not nearly enough to account for the suffering and loss of life! It's a well known fact that players are routinely injected with Toradol before games so they can play pain free through their injuries. After all, what value are they on the side lines? It's not a narcotic. It's legal. Therefore it's okay. Integrity?
And now Ray Rice. While we don't know for sure exactly what went down in that casino elevator most of us out here in the public that you depend on believe an NFL trained and conditioned football player knocked a woman around then dragged her limp body out of that elevator seemingly without regard. In the court of public opinion Roger you are being slammed because the measly 2 game suspension SEEMS to send a message that in the scheme of things (domestic abuse-wise) if it's a first offense and you're thought of as a "good guy" you'll get off a little lighter in your system that you claim strives for "consistency" in the fines and suspensions (sentences) that you the commissioner (judge) hand down.
The list goes on and on about incidents off the field of play. Ray Rice's woman- bashing will be replaced by the next shooting, murder, DUI or domestic violence case. Integrity? Nah.
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