On the 40th Day

>> Thursday, August 20, 2015

These last few weeks have been rough. Bug saw an increase in seizures, for no known reason he was seizing so much at night, rescue medications became almost a norm again. Almost. He has slowed down the last few days, thankfully because the thoughts of SUDEP were creeping back in.

Remember SUDEP? Sudden Unexpected Death in Epilepsy.  SUDEP that kills more people than Breast Cancer every year. SUDEP, the always-in-the back-of-my-mind-reason that Bug will die.

During that bad time with 5+ seizures a day (still a far cry from the worst he has ever been) I watched him lose a few things. It was heartbreaking. He forgot how to unlock the door, release his seatbelt (which will keep him safer but still...) and he stopped coming to me when I called him.

It happens. We lose some things and gain others, it's horrible. I hate it. It motivates me and then...something happens that stalls that motivation.

The stall this time is exactly 39 days long. We have been working on federal legislation to help others get the High CBD treatment that Bug and so many of his friends are using successfully here in Utah. Things were going well, the federal legislators understood the message, they understood the need, they knew that this legislation is right and good and will change lives for the better. At least, those who took the time to listen and try to put themselves in the shoes of parents and adults across the country with chronic conditions like epilepsy knew. There have been a few that will not listen, that see anything from the cannabis plant as harmful, and then there a few that think that this rescheduling is not enough so they won't support it. That last one is really baffling.

Change cannot come fast enough, but change for the sake of change alone will not get anyone a positive, replicable direction. We need to be careful without being paranoid. We need to not say: let's only try it on the very worst patients. Because when we do, and those patients do not respond, they say: See? It doesn't work. Well, they were the worst for a reason, it was difficult to treat, almost impossible to treat, and no one expects the very worst to always respond remarkably. You don't throw away the treatment working for thousands because a handful of people didn't respond. You just DON'T. But for unknown reasons, some are saying: Let's maintain the status quo. It was the status quo that almost killed these children, it was NOT letting doctors and their patients make the decision on their own treatment choices, it was removing one of the most successful tools in their kit: cannabis as a pain reliever, anti-spasmodic and immune regulator.

This bill, is a good bill. It provides for state's rights, parental rights, patient rights and the ability to provide research. Research that can be considered pure, untainted by perception. Research that can provide long-lasting change and relief for millions, yes, millions of Americans.

So while I watch my friends and loved ones struggle with speech, wonder where they are, watch them wait while the Todd's Paralysis runs its course, while I watch and lament for their unnecessary struggle, some federal legislators are going home and enjoying their last days of summer with their families and friends with nary a thought about the people that live minute to minute wondering if it is their last days altogether. No, I am not exaggerating.  I am not painting that picture to rouse sensibility into action. I am miserable with concern and worry for those I love and I see the chance to make that better and some of your legislators are sitting by the pool smiling in the sun, watching their children or grandchildren laugh without care.

For 39 days the laughter of their children will ring in their ears while we hear our children scream at the onset of a seizure. 39 days of being a family for the sake of being a family and not just spending as much time together because you never know how much time is actually left.

And on the 40th day, when they all return, what needs to be heard are the words of the people saying: do what is right, Hear this bill. Send it to be debated, send it forward with your blessing, send it into the history books as the bill that helped save children with epilepsy, cancer, and other normally helpless conditions. Change the world on that 40th day.

Take action. Make that 40th day OUR day.

To help, contact your Senator and Representative and ask them to support, co-sponsor and move forward the federal effort to reschedule CBD and Hemp.



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What a Seizure looks like (Graphic Content Included)


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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