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!
Monday, August 18, 2014
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.
Wednesday, July 23, 2014
A Wink and a Smile
That's what I'm grateful for today. A small joke--- then a look my way, a wink and a deliciously big smile. Michael has re- arrived!
I know our situation is not nearly as devastating as so many. And in the moment when I acknowledge this, I feel an emotion of my distant Catholic past---- guilt! And then... I let it pass.
It's okay that I want Michael to have a better life. It's okay to be upset when the seizure beast returns during the day after a 5 year absence. It's okay to not want to settle for what I have but to want more, much, much more for my handsome, smiling son.
I know our situation is not nearly as devastating as so many. And in the moment when I acknowledge this, I feel an emotion of my distant Catholic past---- guilt! And then... I let it pass.
It's okay that I want Michael to have a better life. It's okay to be upset when the seizure beast returns during the day after a 5 year absence. It's okay to not want to settle for what I have but to want more, much, much more for my handsome, smiling son.
Tuesday, July 22, 2014
ONFI, Seizures and Cars
Let me just get this out of the way first--- ONFI SUCKS! Okay. Moving on.
I returned from working locally yesterday to a glum faced husband announcing it had been a tough day. Michael was sleeping upright on the couch. Barry related that Michael had a seizure at the gym in the morning. "A seizure? In the day? While awake? Was he climbing the wall?" All fired at him in rapid succession as I tried to control the urge to scream at the top of my lungs. I' m sure I managed to use the F word in some shape or form to vent my anger. "No, he was --- in between climbs--- so he fell on the floor, which is soft", he added. He went on to say the seizure was relatively short- a minute and a half, that he declined the gym attendants offers to call 911, that Michael recovered well meaning he was alert enough after the seizure stopped to stand up on his own and walk out of the gym.
A little bit of salt was added to the wound when they arrived home. Afternoon meds were taken as usual. Then Michael announced he was going to take some Advil because he had a headache. Fair enough. However, instead of Advil he took his nighttime meds. Hence the groggy, drugged up guy I saw at 4 pm.
I can 't lie. I panicked. We haven't had one of these seizures in over 5 years. I placed a call to Ray at ROC, then one to Michael's epileptologist (in that order). Ray was pretty certain it was the ONFI wean, later confirmed by the doctor and Cindy Mitchell who had pretty much broken it down to the day and hour the drug we started weaning a week ago Sunday would be out of his system, effecting a rebound seizure. This sounds so methodical and calm but trust that it was a flurry of texts, emails, Facebook messages and lots of hand wringing. What to do now?
This is our dilemma: Michael has achieved some degree of normalcy in his life. Though he has to be driven there he is able to attend classes at Cal State San Marcos and he is on a pathway to getting a degree in Mass Media. While he would like to take more than one or two courses a semester, the cumulative effect of 4 prescription seizure meds and nightly seizures during sleep prohibits him from doing so. Recently he took up rock climbing at a local gym. When he was more coherent last evening, bordering on fairly alert actually, he told me had some of his best climbs yesterday. No need to examine what was going through my head when I realized he could have been suspended mid wall.
Anyhow- so we want to maintain this degree of normalcy as we embark on our cannabinoid journey. I love the changes we have seen with THCA and look forward to adding CBD at some point in the future. We chose to wean ONFI because of the experiences of others. I wanted it gone or at a lower dose before we move to CBD. So---- what to do? We 've decided to add back that ONFI dose and wait till the full dose of THCA kicks in, things have a chance to settle, and by that I mean we're back to a baseline of no daytime seizures, and then --- we'll try again.
What have we learned from this latest incident? Well--- I know that ROC is aptly named. I truly felt cared for and it was ---well--- comforting and reassuring. I know that Michael's epileptologist is fully supportive of our cannibinoid journey.She immediately placed the blame on benzo withdrawal and discussed WITH me, not talked TO me, about the next step. Some may feel we should have continued with the wean but I'm not willing to take the risk right now. Timing is everything, right? Now is not the time. But when we DO tackle this wean again, we'll be doing so using a pediatric suspension so we can go REALLY low and slow.
It's the day after. The sun is shining brightly. We are keeping him "close" today as the neurologist advised. We are wounded , not beaten. We hit one of those "potholes in the road of life" my Dad used to talk about. Michael had two questions for me when he came downstairs a few moments ago: "When can we start the liquid ONFI? " Followed by, "IF not ONFI can we start weaning another drug?" And just now, "So yesterday probably eliminated a car in my future?"
Normalcy.
I returned from working locally yesterday to a glum faced husband announcing it had been a tough day. Michael was sleeping upright on the couch. Barry related that Michael had a seizure at the gym in the morning. "A seizure? In the day? While awake? Was he climbing the wall?" All fired at him in rapid succession as I tried to control the urge to scream at the top of my lungs. I' m sure I managed to use the F word in some shape or form to vent my anger. "No, he was --- in between climbs--- so he fell on the floor, which is soft", he added. He went on to say the seizure was relatively short- a minute and a half, that he declined the gym attendants offers to call 911, that Michael recovered well meaning he was alert enough after the seizure stopped to stand up on his own and walk out of the gym.
A little bit of salt was added to the wound when they arrived home. Afternoon meds were taken as usual. Then Michael announced he was going to take some Advil because he had a headache. Fair enough. However, instead of Advil he took his nighttime meds. Hence the groggy, drugged up guy I saw at 4 pm.
I can 't lie. I panicked. We haven't had one of these seizures in over 5 years. I placed a call to Ray at ROC, then one to Michael's epileptologist (in that order). Ray was pretty certain it was the ONFI wean, later confirmed by the doctor and Cindy Mitchell who had pretty much broken it down to the day and hour the drug we started weaning a week ago Sunday would be out of his system, effecting a rebound seizure. This sounds so methodical and calm but trust that it was a flurry of texts, emails, Facebook messages and lots of hand wringing. What to do now?
This is our dilemma: Michael has achieved some degree of normalcy in his life. Though he has to be driven there he is able to attend classes at Cal State San Marcos and he is on a pathway to getting a degree in Mass Media. While he would like to take more than one or two courses a semester, the cumulative effect of 4 prescription seizure meds and nightly seizures during sleep prohibits him from doing so. Recently he took up rock climbing at a local gym. When he was more coherent last evening, bordering on fairly alert actually, he told me had some of his best climbs yesterday. No need to examine what was going through my head when I realized he could have been suspended mid wall.
Anyhow- so we want to maintain this degree of normalcy as we embark on our cannabinoid journey. I love the changes we have seen with THCA and look forward to adding CBD at some point in the future. We chose to wean ONFI because of the experiences of others. I wanted it gone or at a lower dose before we move to CBD. So---- what to do? We 've decided to add back that ONFI dose and wait till the full dose of THCA kicks in, things have a chance to settle, and by that I mean we're back to a baseline of no daytime seizures, and then --- we'll try again.
What have we learned from this latest incident? Well--- I know that ROC is aptly named. I truly felt cared for and it was ---well--- comforting and reassuring. I know that Michael's epileptologist is fully supportive of our cannibinoid journey.She immediately placed the blame on benzo withdrawal and discussed WITH me, not talked TO me, about the next step. Some may feel we should have continued with the wean but I'm not willing to take the risk right now. Timing is everything, right? Now is not the time. But when we DO tackle this wean again, we'll be doing so using a pediatric suspension so we can go REALLY low and slow.
It's the day after. The sun is shining brightly. We are keeping him "close" today as the neurologist advised. We are wounded , not beaten. We hit one of those "potholes in the road of life" my Dad used to talk about. Michael had two questions for me when he came downstairs a few moments ago: "When can we start the liquid ONFI? " Followed by, "IF not ONFI can we start weaning another drug?" And just now, "So yesterday probably eliminated a car in my future?"
Normalcy.
Wednesday, July 9, 2014
It's Official: I'm Addicted
It's practically the first thing I think about after waking, second only to checking that Michael is NOT seizing and IS breathing. I definitely think about it often throughout the day and sometimes a family member points out smugly that they knew what I was just doing upstairs.
My name is MaryLou and I am a tapaholic. That's right- a tapaholic.
I have never in my adult life--- oh hell--- my entire life, been a fan of physical exertion otherwise known I suppose as exercise. I failed miserably at playing softball in my youth. My mother, an excellent softball player, so much so that all her contemporaries say she could have played professionally, told me I threw like a girl. Yes. She really did say that. As an adult I tried it again when Barry and I moved to Michigan. I wasn't recruited for a second season. There have been multiple gym memberships, home exercise programs from Jane Fonda to Janet Jones to wii Zumba, and multiple contraption purchases including a stationary bike. Nothing lasted. I either was ill equipped for the sport, bored stiff with the routines or sick of working out next to the toned and buff.
But tap--- ahhhhh---- that's a different story. One hour of mixed music that transports me back in time to high school dates, college concerts, broadway shows, my wedding day, my kids childhoods and keeps me current with today's music as well. One hour of constantly changed up dance steps. Shuffle- heel-heel-pull-heel-toe-heel. That's the one I have been obsessively thinking about and practicing the past few days. What has happened to me? FitTAP: "the benefits of fitness, the joy of dance". Indeed!
My name is MaryLou and I am a tapaholic. That's right- a tapaholic.
I have never in my adult life--- oh hell--- my entire life, been a fan of physical exertion otherwise known I suppose as exercise. I failed miserably at playing softball in my youth. My mother, an excellent softball player, so much so that all her contemporaries say she could have played professionally, told me I threw like a girl. Yes. She really did say that. As an adult I tried it again when Barry and I moved to Michigan. I wasn't recruited for a second season. There have been multiple gym memberships, home exercise programs from Jane Fonda to Janet Jones to wii Zumba, and multiple contraption purchases including a stationary bike. Nothing lasted. I either was ill equipped for the sport, bored stiff with the routines or sick of working out next to the toned and buff.
But tap--- ahhhhh---- that's a different story. One hour of mixed music that transports me back in time to high school dates, college concerts, broadway shows, my wedding day, my kids childhoods and keeps me current with today's music as well. One hour of constantly changed up dance steps. Shuffle- heel-heel-pull-heel-toe-heel. That's the one I have been obsessively thinking about and practicing the past few days. What has happened to me? FitTAP: "the benefits of fitness, the joy of dance". Indeed!
Sunday, July 6, 2014
Changing Paces
So Michael had a seizure yesterday at 5:37 AM---- in his sleep. Nothing extraordinarily different about it though it did come less than two weeks after the last. Once he was settled and sleeping I just went back to bed resisting the urge to write about yet another stupid seizure in some kind of violated and madder than hell state. Does all my ranting really do any good I asked myself? Am I preaching to anyone other than the choir of desperate, despairing and depleted parents who just want their kids to stop seizing and have a shot at living some semblance of a normal or just a better life?
I don't know the answers. I know I am beginning to think I need to do something different or do what I do differently. I know in our personal situation we have a long ways to go before we can determine if cannibidiol products and fewer pharmaceuticals will change Michael' s life. I remain hopeful though.
I'm thinking it might be a nice change of pace to practice "breathe in...............breathe out" as Michael has often instructed me. Or maybe, heed my father's long ago words, "MaryLou don't wear your heart on your sleeve". Maybe. I'm thinking.
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