High Hopes, Low Supply

seedlingMy brief window of a seizure-free streak has broken.  It’s okay, I can still see through the window.  The seizure was mild, I only lost a few seconds.  I didn’t convulse or drool or do any of the other various embarrassing things a person might be prone to do during a seizure.  I was brushing my daughters hair when I felt a rising, vaguely familiar, sense of I’ve done this before.  l tingled.  Of course, I had done it before, I’ve combed my daughter’s hair thousands of times. I ignored it. Then the next thing I knew, my daughter was looking at me.  She told me I just had a seizure. I was surprised, like I always am.

“How do you know?” I asked.

“You stopped combing my hair and just stared at me.”  She responded. She’s an old hand at seizures by now. She has witnessed dozens, probably hundreds of seizures.  She recognized the signs. I lost the time, my brain was completely wiped. I never finished brushing her hair.

I asked her, “What happened?”

“Not much,” she said.  “You just looked at me with a weird face and didn’t respond.  You smacked your lips.”

I had to believe her.  That sounded like a seizure.  The problem with seizures is, you don’t remember.  That’s part of so many seizures, the loss of consciousness.  You don’t know what you don’t know. Time is fluid and I have to believe what other people tell me.

“It wasn’t severe,” she continued.  She was 13 and very calm.

“How long did I lose?” I demanded.

“I don’t know, twenty seconds, a few minutes.”  She was bored of talking about it already. It is just part of our life.  And it was not nearly as bad as last time.

January was a “bad month.”  I had a few clusters of seizures, culminating in three or four tonic-clonic seizures.  I can’t remember how many. Those ones hurt. They are the “bad ones.” This seizure wasn’t like that.

Simple and Complex Partial (also called Focal) seizures aren’t nearly as destructive.  They are the “good ones.” There is a broad spectrum of seizures I experience. The small ones can precede big ones, but sometimes I am lucky.  I will only lose a few seconds here or there. I can go on with my day, more or less. I’m not wrecked like I am after a Tonic Clonic (also called Grand Mal).  

I went almost two months without a seizure.  Which is as good of a stretch as any.  I often have multiple seizures monthly.  They cluster and I am wiped out for days or weeks after.  I can’t stay awake and sleep for 12 hours straight.  Weeks of postictal recovery stretch out.  I sleep and am unable to do simple things. I don’t leave my house.

A short complex partial seizure is like a walk in the park in comparison.  I felt fine-ish afterwards. I still felt like a person, not just a disconnected, neurological mess of burnt out circuits.

With every seizure there is infinite risk and fear.  I had been so hopeful.  Since January was such a wreck, I started a new treatment plan.  I added Keppra, an anti-seizure med, and medical marijuana.  I was hopeful that I could find that magic combination of meds that would keep me seizure-free.  I once went 7 years without a tonic clonic seizure. Those were the sweet days…  I dream of getting there again someday.   I had two months seizure-free and I didn’t have a seizure cluster.  That’s better than nothing. It’s a lot better.

I fell in love with my new Harlequin vape oil.  It is 1:1, equal parts THC:CBD.  I felt great. I had been looking for quality medical marijuana to treat my seizures for 21 years.  I have been a vocal advocate since I was diagnosed.  The culmination of Pennsylvania’s MMJ program was a literal dream come true.  I was driven 2 hours away to get my legal medicine as soon as my card was valid.  I don’t drive, seizures prevent me.  It was a big deal to get the ride.

I was ecstatic to get my new vape pen.  I bought a few different things to try, since I hadn’t tried vaping before.  Harlequin was just what I had been dreaming of.  I floated on a happy cloud and didn’t have any seizures.

Then I ran out…  And so did the dispensary…  I had two different rides set up, people willing to take the trek in the snow to get more medicine.  But the Harlequin was sold out. (It still is.) The next closest dispensary in Pittsburgh was also sold out.  It is a popular product. Thousands of people have been waiting for access to CBD oils. There is so much hope from the neurological community.  We all want CBD. I’ve contacted the dispensary dozens of times. They have been friendly and as helpful as a sold-out store can be. They keep me updated, but there isn’t the supply to fill the demand.  

There’s a small catch to our MMJ program.  Everything must be grown and processed in Pennsylvania.  That takes time. All the products available all over the country are unavailable to us.  We are forced to wait. A watched pot never boils or grows fast enough. It was great that they opened the first dispensaries, but only one company was shipping their precious products.  They have been highly popular. There are shortages all over the state. I can’t get to Philly even if they had some. An 8+ hour drive is out. It’s just not feasible for me. I have to wait until the supply is back and more grower/processors get online.  There is a dispensary that is slated open in my hometown, but the opening date is not exactly set. First it was “Late March.” Then it was “April 13th, subject to change.” It’s still nearly a month away, if all things go as they expect.  I’ve already contacted them to let them know I want to be first in line when they open.  I’m not fooling around anymore.  My mother-in-law has her card and Parkinson’s.  She is anxious to get the also-sold-out CBD capsules.  We have high hopes.

But I ran out of my medicine.  I had a seizure.  I was heartbroken.  It was a small seizure, and it was only one.  One seizure is always too many.  But you take what you get.  I felt frustrated.  I wished desperately that I could drive across town, or the state, to get some more vape oil.  The law says I can.  I had the ride.  It didn’t matter.  I considered going to Michigan or Canada.  They have MMJ and are actually much closer than Philly, yet still too far away.

I don’t blame the dispensary or the grower/processor or the state or anyone else.  We have the beginning, we have hope… But we are still having seizures and still waiting on our medicine.

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