Sunday, April 2, 2017

Emerging

We are creeping out of that deep, dark hole we've inhabited for fifteen months. For the past two months Michael has been seizure-free during waking hours. He has resumed many of his activities. He's back to doing his share of household chores. He's back to independently performing all his activities of daily living including showering behind closed doors. He just entered the house after taking a long walk in the neighborhood with Katie. He's clamoring to take some golf lessons and is anxious to get back out on the water to paddleboard. He's coming back-and so are we-but the climb out might be just a tad more difficult for the parents and sister.

It's hard, this letting go again. We're traumatized, I suppose, from the falls and injuries, the intubation and the severity and frequency of the seizures. My stomach still gets butterflies when I hear a siren. I have to have lengthy self-talks and keep myself madly busy when I hear the shower. If the neighborhood walk seems a little long I might check the mailbox several times to assure myself Michael isn't laying curbside in the street. It's difficult to push away the bloodied images; hard to forget the many, many seizures we were powerless to stop. But we will, because we MUST. For Michael. For us.

So, here we are. It didn't kill us. It did make us stronger. We're grateful that, for whatever reason, the seizures which overtook our lives have ceased. We are easing into a new "normal". There is more healing to occur-especially emotionally, but we are remarkably intact. So many fine people experienced this extended dark period with us- profoundly smart and competent professionals, my Mom and brothers, extended family including aunts, uncles, cousins and dear friends. There were many prayers, so many positive thoughts, countless encouraging words and lots of warm, loving hugs. If you ever doubt such gestures make a difference, think again.  They do.

Epilepsy sucks but it won't win. Here. We. Are.

Wednesday, February 8, 2017

Right Left and All Around

So---after numerous EEGs, a PET scan,  a MEG, a SPECT scan, multiple MRIs, genetic testing and frequent and thorough record reviews and examinations by some of the best and brightest epileptologists here and in our neighboring state of Arizona during a hellish fourteen months of seizures running amuck---after all this---findings are inconclusive.

We now know that Michael's brain has no lesions (we knew that via MRIs in the past). We now know via the various scans that he has multiple focal points in both hemispheres and medially involving several lobes. We now know that  surgery, laser and Neuropace are unlikely treatment options. We now have a plethora of information about Michael's brain---more than we can comprehend. It feels as though we have done everything we possibly could to come up with a more definitive diagnosis and targeted treatment plan. And yet---we're pretty much where we were before the most recent descent into seizure hell.

We may try a new medication while dropping a current one, once blood levels are completed and IF we can figure out why, since mid-December, Michael's seizures have decreased significantly. That's right---SIGNIFICANTLY. Why? We, and that includes Michael's MD, just don't know. I suspect we very well won't figure out why.

We're not quite back to where we were prior to that bloody night of November 3, 2015, BUT we are starting to feel more confident that we will get there.  I can't say we were surprised by the results of the battery of tests though we were disappointed they didn't point to a more defined plan of treatment. We certainly didn't need any tests to validate that Michael's brain while sleeping is a abnormally busy organ and while awake, as the Mayo doctor noted via the EEG readings, it was "perfect".  

I'll end on that note. Right, left and all around. Perfect.






Saturday, December 24, 2016

A Motto That Matters

The Mayo Clinic Hospital's admission packet notes this: "Our primary value-the needs of the patient come first-is a commitment made every day by every employee". This month Michael spent four and a half days as an in-patient there following a referral by his San Diego physician for a SPECT scan and an overall review of Michael's history in an effort to gain more insight and come up with a treatment plan that brings some relief from the seizures that have overtaken his life in the past year.

We don't know the results of the tests yet. We DO know this-our experience at Mayo was unlike any other we have had in navigating the health care system during the last few decades. I have been a part of health care systems that seek highly paid consultant groups advice and create new vision and mission statements rolling them out in glossy brochures and banners proclaiming this is what we believe NOW or for several years until a new regimen invites the services of yet another consulting group to reshape or shake up the temporary belief system. Employees typically don't buy into these administrative efforts to change an organization since they recognize this too shall pass.

Barry and I had numerous discussions while we were at Mayo. Why were we so impressed? What was so different? One day I said, "it's more than a motto. It is TRULY the culture of the organization; they walk the talk". Every  person we came in contact with exhibited via words and actions that Michael's needs (and ours as an extension of him) did indeed "come first". Registration staff, cafeteria cashiers, physicians, nurses, anesthetists, pre-op and recovery staff, housekeepers. Every. One. It's so simple, really. After all, hospitals and health systems exist for one reason don't they? Or they did. Once upon a time. The Mayo brothers and their father got it right many decades ago and their legacy lives on. Did you see when I posted the quote of Dr. William J. Mayo? "The best interest of the patient is the only interest to be considered". How did many of our modern health care systems stray so far from that basic tenet?

Lastly, I want to address the environment. I'm a nurse. I've been in many hospitals in all parts of this country. This hospital was the cleanest I've ever experienced. Spotless. Michael's room was quite large. The recliner provided for anyone wishing to spend the night was comfortable and easy to convert to a bed. The belt that was applied lightly to Michael's waist while in bed had a lock that only staff could access thus assuring there would be no venturing out of bed unmonitored. The Lift and Track system enabled Michael to walk and exercise and enter the private bathroom in his room ALONE while the staff who managed the lift talked through a crack in the door. Had he experienced a seizure while in the vest connected to the lift, a mechanism would have suspended him in air to avoid injury until proper placement. How did this make us feel? It made us feel safe. Safe and secure enough to enjoy dinners out and return to our OWN room until the next morning. First time. Twenty-seven years.

Our stay was not without a couple blips and mishaps. But nothing that overshadowed our overall satisfaction that we were cared for and cared for well. As we end what has been a very trying year, I wanted to write a post that felt positive and grateful and gave me hope for the future. I have a plan. I'm on a mission to improve services to epilepsy patients a little closer to home. Wish me luck. And Happy Holidays to you and those you love.


Sunday, November 20, 2016

Time Out


My friend Suzanne is coming up on a milestone birthday later this month.. She too has had a rough year---in fact, a rough couple of decades juggling some heady life issues and a busy professional life. Somehow, whatever she and I are going through we seem to find the right cord of caring and compassion to support one another-and that coupled with a very healthy dose of black humor helps us to get through some of the more challenging aspects of our lives.

So....the start of what I believe will be a protracted celebration (yay) began yesterday. Suzanne arranged a visit to a spa north of San Diego. She described it as the "Target of spas" so as to keep my lofty expectations in line, I suppose. Our friend Julie offered to drive and we set out at 7:30. Before I left, my Mom and Meaghan admonished me to relax and Barry asked that I not "boss from afar". The plan that I sketched for dealing with an emergency was that Barry would contact Meaghan and Meaghan could drive and get me if ANYTHING went awry. That plan was still on my mind when I got in the back seat of Julie's car. In fact, I was very excited to indulge in the day that Suzanne had mapped out from start to finish but there was that piece of me that couldn't let go of the what if. After we were on the road for 45 minutes, Suzanne announced we had another 45 minutes to go. I hadn't realized the spa was such a distance. That's the instant I resolved  to Let. It. Go. To intend and commit to relax.

We arrived at Glen Ivy at 9 AM. We were efficiently checked in by an engaging young man. I looked around at the great selection of clothing and beachwear in the adjoining gift shop. I could have spent some time there if I were not so eager to get to the  perfectly appointed locker room with the requisite marble and stone showers, dressing areas, make up counters, steam room and Jacuzzi.  A first impression-this place would be just fine-better than fine. Perfect. We changed into our suits and walked through the lushly landscaped grounds to the first stop---a Roman tub-like bubbling pool with epsom salts to soothe our muscles and warm our bodies for our upcoming massage experience. The beginning. Ahhhhh.

Next---my hot stone massage. Vanilla and tangerine scented lotion and the warm, soothing, smooth rocks applied with gentle vigor first to feet and calves and legs---then to all the dang stress spots all over my back and down to my fingertips. I think perhaps I let out a mini, low pitched sound or two but mostly I just lay still somewhere between an oncoming sleep and the wistfulness that this just would not end PLEASE. For several moments after my 50 minutes were up I didn't trust myself to get off the table. I was so relaxed my limbs felt like jelly. Ooooh.

Following another dip in the epsom salts we claimed our chaise lounges at one of multiple pools on sight to soak in some rays on what was a perfect Southern Cal day. Close to twelve, Suzanne announced it was time to hit the bar for a Pina colada and get a float for the shallow pool. We chose to float in beanbag-like "chairs" with an extra one in the middle upon which to rest our fully relaxed legs. We floated and floated in circles and every now and then touched the bottom to rearrange our sun and shade positions. We took in the plants and trees and watched a couple of very busy woodpeckers fly between several enormous palm trees. I tilted my head back and saw blue sky and mountains and those palms. Oh my.

Lunch was great-a little healthy, a little wine, a lot of chatting. Nothing serious really- but interesting. Julie asked "if you could take any kind of class what would it be"? The simple question caught me a little off guard. I first said painting. Then no---maybe flower arranging. Whoa. What would I really want to take? Some food for thought.

After lunch a little more lounging at our sunny spot by the pool and some deeper conversations about losses in our lives and how people aren't always what they seem but sometimes they ARE. Talk about our children--their plans. What we want for them. Sharing. Good for the soul.

Time for a dip in the mineral pool. The  sulphur smell permeates. It's warm but not my fave. It's a short dip and then we moved on to the mud pool. We stood knee deep in brown water and applied mud from a mound all over our bodies. The mud reminded me of dark caramel sauce and it was smooth and  cream-like going on. We all had that orange look we've become accustomed to seeing (can't resist) when we entered the  warm stone room where the mud baked on. Then -exfoliation with a towel and washing off in the shower. That was a LOT better than I expected. There's a bit of camaraderie with other spa-goers that perhaps is caused by the masking of how we really look or how we all look so much alike. Who knows? It was fun!

The finale of the day was our Grotto experience. I had worried about this when Suzanne initially arranged it. I wasn't sure I wanted to go underground in a Southern Cal mountain range. But as I announced on our way to the elevator to take us down, I was "too relaxed" to worry. Once in the grotto we were painted with a moisturizing lotion which had shea butter and coconut oil among an array of other ingredients guaranteed to soothe and smooth. We sat in a warm room to absorb the lotion then showered in another to wash it off. We sat in a cool room to close our pores while we sipped on hot tea and surveyed the room built underground many years ago as we each just seeped in the calm.

That would be the final treatment of the day. We went back to the locker room area, visited the steam room and showered and dressed to end our day. It was the end of the day at the spa, but not THE END. Thankfully, Julie drove home quite skillfully and pointed out when I remarked how dark it was, that perhaps that was an effect of the sunglasses I continued to wear. Relaxed. Have I mentioned I was relaxed?

We decided to forego a formal dinner and go to the bar of a local 5 star restaurant close to home. We scored a cozy corner table, ordered drinks and several dishes and continued to enjoy each other's company and bask in the prevailing feeling of the day: relaxation.

I wish this fleeting feeling of relaxation for all the caregivers I know. I hope they are lucky enough to have a support network similar to my own. Honor them. Not just this month---but all the days and months and years. Being a caregiver is at once the most demanding and enriching experience. Make no mistake. It takes a toll. May they all have some Julie's and Suzanne's in their lives.

Aaaaaaaah.


Friday, October 14, 2016

Customer Service

I talk to the great Customer Service Reps of my insurance company frequently. In fact, for the past few months I've spoken with them at least weekly, sometimes two to three times a week. But this week----well- this week, I have spoken with them  daily; sometimes multiple times per day. I want to clarify that when I say "great" it is not with tongue in cheek. The reps don't make the policies. The reps actually identify with a customer receiving bills of thousands of dollars from  providers after the insurance company initially denies to pay the claim.

This week:

We've been sitting on a $12,000 bill from a lab that ran tests ordered during one of  Michael's June hospital stays. When I inquired about why the insurer hadn't paid the bill I was told by Customer Service that the lab was "out of network". I reasoned out loud that we were in a network hospital of the insurance company when the spinal fluid was drawn and why on earth should we be penalized because the hospital's lab doesn't do said test. The Customer Service Rep (Mary) called me this week to assure me she is still working on this (it's been two weeks).Apparently the lab that sent us the $12,000 bill needs someone at the hospital lab to tell them to bill the hospital. Of course. I get it. The hospital pays the provider lab $12,000 then includes that cost (or more) as part of the hospital bill. The hospital will get paid. The out-of-network provider gets paid and the nice Customer Service Reps at the insurance company seem as outraged as I am by the amount of money billed to run 5 tests.

Another bill. This for three ambulance rides- just over $6400. It took the Customer Service Rep about an hour to sort through this one. Ambulance rides have a co-pay of $200. We're responsible for that-all ten rides. We're also responsible for what the ambulance company charged the insurance company beyond what the insurance company agrees to pay the non-contracted provider, in this case, the service that the SD Fire Department utilizes in response to 911 calls. We have no control, but we'll be paying the close to $400 not covered by our insurance for each ride. We're not going to go broke----but many could. I'm distressed once again by the shocking cost of getting to an emergency room seven minutes away---$2000 plus per ride. The Customer Service Reps are a bit astonished by the amount billed as well. What, I wonder, is the actual cost?

Barry called me the other day from CVS. He said, "they're saying the Felbatol will cost $2014-the insurance is denying payment". This one took several Customer Service calls, a preauthorization from the MD and numerous calls between the insurer and the pharmacy. I also needed to update the hospital system's registration as Michael is newly on Medicare with a supplemental prescription program from what is now his secondary insurer. (Note: this typing was interrupted by a call from the prescription drug plan leaving an automated message for Michael. Once his identity was ensured, an automated caller told us " the prior authorization request is approved for Felbatol"). Okay. Our co-pay will now be $3.60 per refill order once a month. Again I wonder, how does a drug that's been around for twenty-plus years command that kind of payment from the insurer? Their R&D money has long since be recovered. They just keep jacking up the price. And the insurance company keeps paying it.

I am truly grateful for the extraordinary medical care Michael has received during this hellish year but I have concerns that go beyond our frustration to get to the bottom of why Michael's epilepsy has spun exponentially out of control.

I am concerned that drug companies are charging ridiculous amounts for epilepsy drugs that have been around for over two decades.  I wonder as above, what those ambulance rides really cost to get my severely compromised, seizing son to the emergency room. I can only imagine the  charges billed for the in-patient stays. I'm pretty sure when I have a moment that I'm not dealing with Customer Service Reps, out-of-network providers, the remaining tests Michael is scheduled for and a little income producing work, that I just may ask to see an itemized bill or two. That should make for an interesting blog or ten!


Wednesday, October 12, 2016

Hanging on

I want to hang on to hope. I really do. We had a pretty good week---four evenings with no seizures whatever, one with three and another with seven. Then...Monday night. Twenty-plus seizures requiring a significant amount of Ativan to slow things down. It did.

Barry, Meaghan and I were running around to get the medication, the water, note the time of the seizures and wait for the moment of clarity in-between to give Michael the Ativan. Meaghan was muttering "PTSD" under her breath. She's right. The falls, the emergency calls, the ICUs, the intubation, the realization that no matter what we have done, we have been unable to stop so many seizure episodes during  this most heinous year. Yes, we are traumatized. I can hear it  in my voice, see it in their eyes. We are scared, we are scarred. We simply haven't had the time to regroup after one disaster before another occurs.

Most recently, we've had an eight week break from ambulances, ERs and hospitalizations. That's good and I'm grateful. But the dynamics around the kitchen table each evening illustrate the fragility of our psyches. Every dropped utensil, quick movement, bent head or even a throaty, hearty laugh results in high alert mode. When we realize it's not a seizure, conversation resumes but the fight or flight feeling lingers. It lingers and hangs over us, a storm cloud taunting above our heads.

We're a pretty tough group. We really are. We've learned a lot from Michael. He has persevered in so many situations, with so many obstacles. He remains hopeful, even adamant, that he will overcome this setback year as well.  And so....we too are hopeful. Always, all days-there is hope.

Sunday, August 21, 2016

Dedicated to Dick

First, I must apologize. I knew you as Dick for nearly forty years so I just couldn't quite get used to your request a couple of years ago to call you Richard. I mean--- I may have called you Richard while in your company, but you were, are, and always will be Dick in my mind and in my heart.

We share your belief in the hereafter- that it doesn't exist. So I surely don't expect to meet up with you again in that "better place" that some who will try to comfort Sonya, will say you're in. You're not.

You're here. In my adult children who learned the art of discussion and defending their opinions on a myriad of topics around dinner tables in Poway, Del Mar and Vegas.

You're here. When we uncork a fine wine find. We remember the man who introduced us to the good stuff.

You're here. When I see an impeccably dressed man in perfectly fitting tan pants and a colorful sweater.

You're here. When I remember the career saving advice you once gave me. "Take it with a grain of salt" and "consider the source" have not been part of my vocabulary since.

You're here. When I notice the mute button on the remote control. When I hear a hearty laugh. When I think of all the dumb asses in this world (you were right!).

You're here. In happy memories. Christmas Eve's and Easter Sunday's and the year I forgot to turn the oven on for our lamb feast. The Napa Valley trips- The Sullivan's, the wine caves, the gourmet meals.

You're here dear Dick. There will always be a part of you that is part of us.