What is Seen and Unseen.

>> Sunday, December 27, 2015

This last week has been rough, not for Bug. Bug has been doing well. Averaging less than 2 seizures a day still, even with getting sick, this is great! He is smiling and engaged, following simple directions and he is playful. Playful in a way he was when he was very young. He has that: Oh yea? Look about him.

I will ask him to sit down and he will give me a wry little smile as if to say: Make me. If I force him to sit down so I can change him, it's a battle. If I smile back and tease him, he sits down. Tell me, is he yanking my chain or what?

So, what has been the rough part? Watching my father struggle with his...whatever it is. We know what is there: two masses where his stomach and his upper intestine meet and 'cancer' cells in his lymph nodes. They found the one mass a month ago and biopsied it. It was benign. They did NOT operate to take it out. Why? It 'seemed' to be responding to antibiotics. Seemed to, until last week that is. Then, the symptoms started up again and he went back to the Doctor. The week before Christmas. Oy. We know what that means: No action unless absolutely required. Sadly, we have seen that first hand with injuries before Christmas. It's as if the world stops and the misery continues unaided. It says: here have some pills to mask the pain, sorry if it makes you puke, take some more of these pills to help counteract the others. And sorry, neither one of them will remove the problem causing the symptoms, we will address that in a couple of weeks...have a good Christmas.

But, this time, they found another mass. He now has two. Two tumors. Having an additional intrusion in his stomach makes eating, sleeping, walking, and sitting unpleasant. Difficult. This makes life mostly miserable. Instead of staying home, the Doctor told him: Why NOT travel and spend time with your family? And he did. He toughed it out and made the airplane ride 1300 miles with one layover. He's my hero.

There have been joys, and there has been watching Dad be silently miserable for days. After spending 13 years watching our silent little boy go about his life, I have learned a thing or two about body language and a thing or two about what can be happening based on that body language. Dad's body language says: I hate life. But his mind and his mouth say: I'm ok, sorry to be a bother. As if. I re-assure him that it's not a bother, in any way, to love him and to help him. I get him drinks, ask him if he needs anything and he responds with the same thing: Don't go out of your way. I told him that it's OK for him to take it easy, to be miserable for a bit and to need help. I told him that we will be sure to take care of that causing all of his pain and misery as soon as we can, and until that can happen, he gets special treatment. I watch him hide so his pain is not our pain. His misery is not intruding on our Christmas. All I see is my Dad, being my Dad and needing to know he is a big part of our family and we are always here for him.

And so I asked him:

Would you ever consider Medical Marijuana?

What I expected to hear, I did not hear. I heard instead: Yes, I would.

I went into the bathroom and cried. I cried because he really would benefit greatly with just this ONE medicine. Medical Grade Cannabis would help with EVERYTHING he has going on. And that is FACT. NO ONE disputes that Medical Cannabis helps with nausea, would help increase his appetite, and helps shrink certain tumors. With this ONE medicine he could have a greatly improved quality of life and he could enjoy his grandchildren at Christmas. The toddlers who shriek with delight at the lights on the houses, the presents under the tree and taking pictures of Grandpa. He smiles for her, for his little granddaughter with the glowing red hair, who says: Smile! He sits on the floor and plays trains with his little grandson, while they both make train sounds...whoot whoot...chugga, chugga, chugga. I watch him pause, to gather his strength, which is lessened because he can't eat well, somedays he can't eat anything because of the pain and nausea. But even on those days he still smiles with his Grandchildren.

I have watched this play out every day since he came to stay with us the day before Christmas. He starts his day with Zofran and Hydrocodone, if he forgets the Zofran, he will throw up the Hydrocodone. Then he won't want to eat and he won't want to 'bother' anyone. All I can see is that he could have had Cannabis a month ago and been in a different place. Proven fact he would have been doing better with at least the pain and the eating even if it hadn't shrunk the tumor.

I sat in the bathroom and cried, as I have so many times the last two years. I have watched parent's bury their children, I have attended funerals of parents that have died too young, and I have watched 'broken' people be made whole.  I thought: it's my proximity to this reality of life among death, that makes Cannabis such an easy treatment option for me. I am in the trenches, I am talking to people wanting to die, and speaking with them months later living life after adding Cannabis to their treatment plan. It's this caring for the people that most would rather overlook that makes it so easy for me to see that there is NO decision here. It's a simple thing: if it helps, let it help, let these people suffer no longer. Those children you are worried about, the ones that want to hide from their lives in the drugs they ingest, they will NOT be made worse, but my Dad will be able to enjoy his Grandchildren.  You are telling me, and the rest of the world that MY Father, the man who fought for his country, who worked 3 jobs for his family and was a 44 year federal employee is not as important as your teenage drug user? Something is very wrong with this reasoning.

The decision to be made is not about drug use, it's about how best to ensure that we are helping those people that DESERVE help, those people who ARE contributing members of society and are dying while you cry tears for what MIGHT happen with NO proof that it WILL happen. Are you ignoring what is happening now as you sit far away and pass judgement on whose life is worth saving and who should die in pain? This, is all see. Because I have put myself in the position to see it, I open myself up to the pain of helping those that need help. And so, there is no decision for me. You make sure men and women like my Dad get the best medicine for what ails them. What I have seen, makes this an easy decision. Maybe that's the difference: what I choose to see.

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The upheaval of Christmas

>> Sunday, December 20, 2015


14 seizures in 18 days...not a bad average. Last night threw it off a little, 2 in 3 hours. :( But a restful night and he is getting sick, so we would expect at least 10. Holding my breath for the rest of the day.

Working on the KBG Foundation is very daunting and yet, has the potential to be very rewarding for a number of people. 60+ in fact.

I downloaded the abstracts for all 43 PubMed research papers and as I was reading through them, I got sad, and happy, and sad again and slipped into the: remember when he was typical?

This holiday season has been exceptionally brutal on that front. Not sure why. Maybe it started with a video Glenn found of the kids opening and playing with the Christmas presents and each other. I watched Bug tugging on Taylor and her squealing with delight. He would tickle her and let her get away, only to go grab her again. She loved it. We loved it. We were that happy, normal family. One boy, one girl and clueless.

Maybe it started with me listening to Ava and Aiden getting better at speaking, at swearing and being adorable and me...always looking for what may signal something is amiss.

It's the bane of having an oldest child with a different, more complex, medical need. Especially one that, seemingly sprang from nowhere. One year he was eating his birthday cake with a fork, very carefully, with little to no mess and then next...he wouldn't even look at the cake. Or his presents. Or his sister. Or me.

Every Christmas, I torture myself and think that maybe this is year he WILL open his presents again. Maybe this is the year he will hand people their own presents with a smile. I think MAYBE this is the year for....a Christmas miracle.

And then Christmas morning arrives, the littles gleefully jump up and down at their treasured presents (for hopefully at least a week or two) and then I go get dressed and cry. Yep, I admit it. Every Christmas since he was 5. I will try not to that this Christmas, I will try to keep my eyes on the joy of the children, the family, and Bug. I will try. I guess, that would be my Christmas miracle, the only one it seems I will get a shot at for the next few years.

Don't get me wrong, I love watching all of my children enjoying the magic of Christmas, and in the moment, it is all about their excitement, their happiness at watching people open the gifts they picked out for them, not just what they received. There are a lot of laughs. It's just that ever-constant ache at missing my boy still, the ache I haven't ever truly gotten over it seems.

video

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Call me a drip under pressure.

>> Wednesday, December 2, 2015

Christmas 2015
The last few days have been relatively quiet on the seizure front. We have, preemptively added back the .5 clonazepam at night to help with the nocturnal seizures. I hated doing it but he has gone seizure free a day or two with it so...trade offs.

We discontinued the Vyvanse. He was on it for 2 months and the last month he wasn't very happy. He was extremely quiet and not very engaged. 2 days off it and he is back to following direction, humming, kissing and falling asleep in my arms. We will see what happens as the week progresses but if we can keep him at this baseline, we will stay stable with changes until I can get him into a Smarty McSmarterson to help with the folate thing and the KBG.

I awoke this morning, after 4 hours of sleep, to Ava's feet on my throat and began to think about all that has happened the last 10 years and equate it to my current position at the Epilepsy Association of Utah and the KBG Foundation. Then I thought: how am I NOT considered an expert in the personal management of epilepsy?

( I have to throw this in there: Glenn's Dad used to love to ask people if they knew the definition of an expert. They would flounder a bit and he would say: an ex is a has-been and spurt is a drip under pressure. I always think of that when I use the term expert...I use it with respect and very carefully so as not incur his posthumous mockery.)

So I went through the numbers, as she was snoring and kicking her feet at my head, and they are pretty interesting.

7 month old Bug
Before Bug had his first seizure, my billable hourly rate was $175.00. I went from a Technology Executive to a Caregiver and Stay-at-home Mom. Somehow, that change of title devalued me and my time became everyone else's time. For what little comfort I found in it, I was able to advocate for him to get some answers, it took a little longer because I too had devalued myself and let someone else tell me what was best for him. Until I realized that NO ONE knows him, or Taylor, Ava and Aiden like I do. We wallowed a bit with no direction, trusting those we considered experts. But it was only when we told his medical team what WE wanted to see, what WE wanted to try, what tests WE wanted performed, that we found any answers.

When I attend meetings now, they are not multi-million dollar system integration meetings. I don't have a 7 figure budget to work with, and I am not being paid 6 figures. I am, usually, one of the ONLY unpaid people in the room. My motivation is true and focused: I am an Epilepsy Advocate. An unpaid but very professional person with no ego, no kingdom to build except that which raises awareness and services for people with epilepsy.

Aside from my business experience, and being a right pain in the ass at getting care for my son, what makes me an expert?

Let's use averages and tally a few things:

Bug has been seizing for over 10 years.
3,689 days to be exact.
In that time he has gone 14 weeks without seizing (not all at once, his first stretch was 60 days until his third seizure and since then he has not gone more than 3 weeks)
So let's take 98 days off that number.
3,591 days
He has had up to 20 definable seizures in one day and as little as 1. Let's be cautious and say he averages 2 clinical seizures a day.
7,182 seizures (at least)

I have personally witnessed and comforted him at least 7,182 times while he seizes. Varying times and length. Some with cognitive decline and others with a smile as soon as he was done.

7,182 seizures AT LEAST

At Disney VOD
So why, when I am in the room with someone that hasn't seen one, let alone one that day, do they tell me that I am unyielding? Why, when the EAU has been the only group to compromise to get it done are we treated like I am so difficult to work with?  Folks, I have seen more seizures in one week than most of you will see your entire life and now...because you are trying to devalue me and my experience again, I will remind you every time we meet that I am the expert in the room. If that pisses you off, that is your ego and not mine because I have been strategic in compromise to bring all parties to the table and to get a seizure plan that we can all agree upon. Even after you threw out completely, the one we brought that was approved by the Epilepsy Foundation of America and their Doctor/Educator Committee. In your arrogance, you presume to know more than EVERYONE active in the epilepsy community? That is the definition of egocentric, not me asking you provide the same support to students with epilepsy as you do students with Diabetes or Allergies. There is no ego in reminding you about how the Health Care Plan works or ADA compliance.

No, I am not getting paid to be there...and it's a good thing...you couldn't afford me.

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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