Tag Archives: HB 1181

No Common Sense For The Commonwealth

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I have long been a silent supporter for medical marijuana.  But I was afraid to really speak out.  I was a Nancy Reagan’s “Just Say No” kid.  Would the moms shun me at the school if they knew?  It was safer to stay silent.  So what happened?  Charlotte Figi happened.  When Charlotte’s Web hit the news I cried.  I was so happy to see this beautiful little girl reclaiming a life that she almost lost due to seizures.  I was so happy for her and her family.  And then I cried for my children… They have to live with a mommy who sometimes screams and falls down.  That is the worst effect of my epilepsy: my kids have to see me have a seizure.  If you’ve seen a seizure you know, it’s pretty much the worst thing in the world.  If you haven’t, lucky you.  I hope you never do.  Unless you work in Harrisburg or DC: I would love to have a seizure in front of you.  You will be rightfully frightened.  Seizures change everything.

Parents in Colorado and New Jersey and Pennsylvania are fighting to get their children marijuana.  How could I stay silent?  It IS a matter of life and death.  Seizures kill.  Epilepsy is a terrible disease that holds us in a cold grasp until we die. People die from seizures and seizure related injuries everyday.  Over 50,000 Americans lose their life every year.  For me it’s all about seizures, everything in my life is about seizures.

Medical marijuana can SAVE lives.  The Epilepsy Foundation supports medical marijuana.  The nation’s largest epilepsy organization is advocating for marijuana.  That’s huge!  The seizure preventing effects are visible and undeniable.  ALL epileptics need access to this natural medicine that is recommend by Surgeon General nominee Sanjay Gupta and my personal doctors.  I’d like it if Pennsylvania would allow me that courtesy.  23 other states would.  I’m tired of my government treating me like a criminal.  I’m not a bad person.  I just want to have less seizures.  I want to stay conscious at ALL times.

The Pennsylvania Government denies that there is any valid information in the hundreds of studies not done in Pennsylvania.  All the scientific literature does not matter to them.  They insist that they would have to re-do the studies here.  But they won’t do the studies.  Science doesn’t matter to them.  The fact that the federal government has a patent on cannabis (Patent #6630507) means nothing to my so called Representatives.

I read the studies.  The information is there for the taking.  The internet grants us immediate access to governmental documents and scientific journals.  I am convinced.   Marijuana has been known for CENTURIES as a treatment for epilepsy.  Why should I suffer for being born in the wrong century and state?  I just want to be able to grow a plant and stay conscious.  Marijuana can help.  There is anecdotal evidence.  There is scientific evidence.  I’ve had too many seizures to just sit by and wait for Pennsylvania to grow up.  For years I suffered in silence.  I felt so alone in my unstable state of consciousness.  I thought that nobody understood me until I met other people living with epilepsy.  I need to educate the world about my deadly, deadly disease.

I was diagnosed with Temporal Lobe Epilepsy was in 1997.  I was 20.  I went to bed with a headache and woke up in the hospital, talking to my mother on the phone.  She asked me where I was.  I didn’t know.  I had no idea why I was on a phone.  The last I knew I was sleeping.  I could not believe that I had a seizure and was in the hospital brought by ambulance.  It was the first time, but not the last.

They kept asking me what kind of drugs I was on.  That made no sense.  I don’t take drugs. I had taken a biology exam and came home to sleep.  They tested me.  No drugs.  I was confused and angry.  I had another seizure coming out of the bathroom holding the warm container of my own urine.  I don’t remember much else.  Days later I saw a Doctor.  I can’t remember his name, he was just the first of dozens.  He told me I had Idiopathic Temporal Lobe Epilepsy.  It was a diagnosis that I could barely understand despite my years of college anatomy and physiology.  He also said Seizure Disorder but I liked that term even less.

I understood I had a seizure or I was trying to understand that. But I didn’t really believe it.  And I certainly didn’t believe that just because I had one seizure meant that I was going to have another.  I was wrong.  Poor Past Katie, she was so wrong.  That wasn’t my first seizure.  It was just the first time somebody saw me have a seizure.  Over time, as I learned more about my seizures, I realized I had hundreds of un-diagnosed seizures.  I have had seizures my whole life.  I will have them for the rest of my life.  Hopefully they won’t kill me.  I think that every day.

My diagnosis  has not changed over the years.  It’s still Idiopathic (Unknown cause) Temporal Lobe (part of the brain on the side, controls memory and emotions and so much more) Epilepsy (lots and lots of uncontrolled burst of electricity in my brain.)  There is still no reason, no cause, no warning when a seizure might happen.  My brain has too much electricity.  Yee-Haw!  It’s a rodeo!

I’ve gone years without seizures.  Ah, the good years; the sweet seizure-free years.  The longest I went without a Grand Mal (a massive, convulsive, secondarily-generalized seizure) was seven glorious years.  Now I am happy for seven days sometimes.  It’s been 14 days today.  I am finally feeling normal again.  My body has more or less physically healed from the last seizure.  The depression has lifted.  But who knows for how long?

This year the record is 42 days seizure-free.  Then I ended up in the hospital with gallbladder disease and had a cluster of seizures in June. They played fast and loose with my seizures in the hospital.  They gave me so many different injections and bags of saline and radioactive isotopes.  I don’t know what they gave me.  I had a seizure in the bathroom.  I bit my tongue and bled all over myself.  I wandered the halls and looked for my husband whom I had sent home.  I couldn’t remember doing that.  I was dazed and confused: lost in the hazy aftermath of a seizure.  At least I didn’t fall out of bed that time.  I woke up covered in blood and vomit and had no idea why.  Nobody in the hospital knew.  They don’t know how to treat me.  There is no way to treat me after a seizure.  All I can do is sleep and wait for my brain to reboot.  Seizures are exhausting, for days, for weeks at a time.  It’s not just the half hour that I lost, it’s everything that comes after.  My most recent seizure brought me a bruised rib.  But I didn’t fall down the stairs!  I fell into the banister instead.

I would try any plant that could help.  I’ve tried all sorts of minerals and supplements that I found referenced in the medical texts as a treatment for epilepsy.  Marijuana comes up again and again.  There is enough evidence for me and 85% of Pennsylvanians.  But I don’t have safe access to the strains that are curing epilepsy.  Charlotte’s web isn’t available in Pennsylvania.  The variety matters.  Think of marijuana like peppers.  You wouldn’t say that an Orange Sweet Bell Pepper was the same as a Ghost Pepper.  Jalapenos aren’t the same as Banana Peppers.  They are all different strains of the same plant.  Plants are like that.  When you are in a state with marijuana prohibition, there is no choice but one: whichever one your Dude has at that point in time, which changes all of the time.  Nobody else wants to consume marijuana that won’t even get you high. Children in Colorado are allowed to but I’m not.

The Commonwealth of Pennsylvania doesn’t trust me to live my adult life and make decisions about my body by myself with the advice of my doctor.  More than one doctor would prescribe me marijuana if they could.  I have been told more than once.  Neurologists talk about it with me at length.  We are all hopeful for “new” treatments.  But I am in the wrong state for that.

Is Pennsylvania part of the United States or not?  Nearly half the country would allow me medical marijuana.  It’s as free and clear as beer in Colorado and Washington.  But not Pennsylvania.  I am stuck here in the prohibition years.  No medicinal plants for me.  My seizures don’t matter to the legislators of Pennsylvania.

Seizures are being prevented. How can you allow us to go without treatment?  It is a cruel and unusual punishment.  

And that’s why they call us Pennsyltucky.

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Sick Pennsylvanians Hope Up In Smoke

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The Pennsylvania House of Representatives has failed me yet again.  The PA Senate took pity on me and a few of my sick friends.  The Pennsylvania Senate voted 43 to 7 to approve the Raymond Shafer Compassionate Use of Cannabis Senate Bill 1182.  It passed!  43 to 7 is a wide margin.  It represents Pennsylvanians’ beliefs.  We want medical marijuana.  But the House won’t put it on the docket.  They are stingy like that.  They want to wait until after the election.  Because they should.  Because this is a voting issue.  People’s votes will depend on the politicians’ stance on medical marijuana.  They might be able to keep their jobs if the House doesn’t vote first.  My Republican relative just switched his vote for the Democratic Gubernatorial candidate after watching the debates.  He switched because of Tom Wolf’s stance on medical marijuana.  We care!  We want our sick, loved ones to have access to medicine.  Marijuana is an herb, more natural than the grass that grows on your lawn.

This might be a minor midterm election for the rest of the country, but not in Pennsylvania.  It’s a high voter turnout year.  Our state government is up for grabs.  People are passionate about this election.  We all hate Governor Tom Corbett.  There are so many reasons why Pennsylvanians are united against him.  Number One: Education.  Number Two: Fracking.  Number Three: Medical Marijuana.  Number Four: Jobs.  I could go on.  Corbett has the lowest approval rating of all US Governors, wallowing in the mud at only 24%.

Let’s not forget the pending charges against our “Notorious G.O.V.” from his previous term as Attorney General.  Tommy chose not to prosecute Jerry Sandusky: The Rapist of Penn State.  Voting is essential.

I’ve been hearing a lot about reaching out to the millennials, getting them out to vote.  I wholeheartedly support it!  I wish Gen X would vote, but we’ve long since given up.  Thanks, Florida.  Thanks, Ohio.  When Bush stole the presidency, an entire generation of voters fell off.  I try to convince my friends to vote, but many, many, of them will not.  It always comes back to Bush.  We were bright eyed voters, and suddenly our vote did not matter.  Then the rest of Bush’s term happened.  Gen X doesn’t vote.  They aren’t even targeting us with Rock The Vote.  I am a poll worker.  I see the age gap.  The older citizens vote the most.  I thanked the few first time voters.  There were only two.

One vote does count.  I have my position at the polls due to one vote.  My husband wrote me in.  I’m elected!  Four more years, Baby!  We don’t have to let Bush happen again.  We can vote in other people, we can control our government on a local level.  We can vote out Tom Corbett and legalize medicinal marijuana ASAP.  I don’t want to wait until Tom Wolf is sworn-in.  Perhaps the Lame Duck Congress will see which way the smoke blows.  They won’t vote before the election.  There is one day of session scheduled between now and the election.  I like to pretend, but I know they won’t.  I watch them Live on TV.  The House of Representatives is a circus.  My Representative claims to support me.  Since they won’t vote on it, I can’t really know.  People are dying while the House does nothing.

I wish they could see me have a seizure.  Or at least ask my children.  THEY know how I suffer.  They have to take care of me sometimes.  They are the ones who tell me that I had a seizure.  There are safer medicines I could be taking.  I’m not making this up.  I dare you to do a Google search about Clinical Cannabis Studies.  There is plenty of scientific evidence.  I do my internet research, not just wikipedia.  I read the scientific journals online.  The good stuff might not be found until you dig through 20 or 21 pages of a Google search.  I check them all.  This is not new information.  These are reputable scientific publications.  Marijuana is found in Chinese medical texts from long Before Christ.

I had to defend my seizure meds to my insurance company.  They didn’t want to give me such a high dosage.  I don’t want to take it either.  I’m not okay.  It’s been a  week since I had a seizure, that I know of.  But deep bruises are still emerging.  Could these bruises still be from last week?  Have I had another seizure that I didn’t know about?  My ribs have not stopped hurting yet.  Apparently bruised/cracked ribs take a long time to heal. The last time, before this seizure, I gave myself a concussion.  I was glad that I didn’t break my nose.  This time I’m extra happy that I didn’t fall down the stairs.  I did run up and down the stairs to vomit a few times before I was fully conscious.  It is as scary as it sounds.  My laptop didn’t survive the seizure.  I found it on the floor, covered in coffee, much like myself.

So I’m voting for compassion.  It’s my issue.  It is not just my issue, 86% of Pennsylvanians agree!  We need medical marijuana!  Right after we re-fund the public schools and tax the oil and gas companies.  That oil is NOT going anywhere and neither is medical marijuana in Pennsylvania.  The only question is how long will be have to wait?  How many will have to die?  Any single seizure is a chance to die.

The Speaker of The House likes to mute his microphone.  Sam Smith doesn’t want to address the dying people who are waiting for medicine.  He doesn’t want to hear what we have to say.  He doesn’t want us to know what he says either.

Dear PA~ Rock The Vote!  Take Back The House!

I’m voting for Governor Tom Wolf and Lt. Gov. Mike Stack.  I’m on the border of two districts, so I support House Representatives Pat Harkins and Curt Smith; US House Reps Karith Strano Taylor and Dan LaValle.

I sure hope you vote out Sam Smith, Jefferson County!   #turnoutforwhat

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Filed under Current News, Living w/ Epilepsy, Living with Epilepsy, News, Non-fiction, Rant

All Medicine Should Be Legal

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Dear Honorable Members of the Pennsylvania General Assembly,

I am a life-long, tax paying, resident of Pennsylvania. I am a Penn State graduate. I am an newly elected Election Official. My Slagle ancestors have lived in Pennsylvania since 1747, before this state was a state, before this was a nation. I love Pennsylvania. Thirteen generations of Slagles have loved Pennsylvania. I don’t want to leave. I don’t want to be a medical refugee or a criminal. I just want to have less seizures.

I am an epileptic. I have Intractable Temporal Lobe Epilepsy. I have had seizures my entire life and it’s not going to get better. I have simple partial, complex partial, absence and “Grand Mal” Tonic Clonic convulsive seizures. My seizures are not controlled. I might have had a seizure today. I’m not quite sure. Sometimes I wake up on the floor and I know I’ve had a bad one. Sometimes I just wonder, did I just lose a second there?  I have them more than I can even realize. That’s the tricky thing about altered consciousness. I don’t even know that I’ve lost time. Today was one of those days. Now I have a headache, so there’s evidence that I had a seizure. I’m always glad just to have a day when I don’t throw up on myself during a seizure. Or fall down and give myself a concussion. Both things have happened to me, many times.

I didn’t believe cannabis could cure epilepsy. I don’t believe anything can cure epilepsy. I thought cannabis could make me feel better, but that it wouldn’t completely stop my seizures. Then I heard about Charlotte Figi. She was having dozens or hundreds of seizures a day and my heart broke. Her poor little body. I’m not sure if anybody can even comprehend that pain. Seizures HURT! But Charlotte started taking a Cannabidiol oil and has gone down to 1 or 2 seizures a week. That is a huge deal. HUGE. I cried. For her improvement and for myself and all the other people who would be denied this treatment based geographical circumstance. The treatment Charlotte received was so clearly working miracles. MIRACLES. Learning about Charlotte’s Web offered me a feeling of hope that I haven’t had in many, many years. Perhaps not since 1997 when I was first diagnosed and was told I would always have seizures; I would always be on medication; I would always suffer from the side effects that make me sick and dizzy and tired and unable to see straight for hours everyday.

I have tried dozens of medicines which have all ultimately come up short. I take poisonous meds twice a day to only partial success. I have several seizures every month. I can’t drive and I can’t work. I’m sick everyday. I live on the edge of danger everyday. At any second I could lose consciousness and scream and fall down and vomit. I can’t control it. I would do anything to make it better. My doctor considers brain surgery the next treatment option. She is reluctant to try any additional pharmaceuticals. I don’t want to crack open my skull and remove a piece of my brain.

There is another treatment accepted and recommended by the former US Surgeon General Sanjay Gupta. He believes that cannabis can help seizures. Why can’t I try that first?!  Why can’t all epileptics try this?  I function under my own 1% philosophy. If I feel 1% better, if I have 1% less seizures, that’s a success!  1% better is still better.  One less second lost is worth so much. Any single one less seizure is a blessing, a great accomplishment. “Any society, any nation, is judged on the basis of how it treats its weakest members — the last, the least, the littlest.” Disabled children are certainly the least of us, the most precious and unable to protect themselves.  Why are desperately sick children allowed to have 300 seizures a week and yet we withhold a viable course of treatment?  Cannabidiol offers a real hope to the 3 million Americans suffering with seizures.

Nearly half the country has already allowed their citizens access to a safe and natural medicine. 80% of Pennsylvania voters approve of medicinal cannabis. It’s time that Pennsylvania joins the movement. Right now our General Assembly has bills in both the Senate and the House of Representatives to allow the medicinal use of cannabis. (Governor Raymond Shafer Compassionate Use of Medical Cannabis Act SB 1182 and HB 1181)  Please represent me and all Pennsylvanians. We just want to have less seizures and more time in our lives. We need it now. People die from seizures everyday. 50,000 epileptics die every year. I don’t want to be one. These bills can save lives.

There is medical evidence. There is science. There are children having less seizures right now in Alaska, Arizona, California, Colorado, Connecticut, Delaware, District of Columbia, Hawaii, Illinois, Maine, Maryland, Massachusetts, Michigan, Montana, Nevada, New Hampshire, New Jersey, New Mexico, Oregon, Rhode Island, Vermont, and Washington. But not in Pennsylvania.

New York Governor Andrew Cuomo has stated that his state will be the next. Legislation to legalize medicinal cannabis is also pending in Florida, Kentucky, Minnesota, Missouri, Ohio, Tennessee, and West Virginia. I don’t want to live in any of those other states. Not even New York which is less than 20 miles away from my home.

Pennsylvania holds the bones of my ancestors and is the birthplace of my children. Please let me stay. I can’t move my family to California or Colorado or even New Jersey; but I absolutely could find a place in Ripley, New York, just across the border. I could sell my house and forever leave the Commonwealth. I would only be a few more miles away from my family. My husband could still drive to work everyday. But I don’t want to. I love Pennsylvania. We should not have to move to get treatment. Don’t make me into a criminal for wanting to have less seizures.

Please make the right decision for the children, for me, and for all sick Pennsylvanians who simply want to feel better. Please support and vote yes on SB 1182 and HB 1181. Please give us medicine. Thank you.

 Sincerely,

Kathryn Amanda Slagle

Medical-Marijuana2

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Filed under Essays, Living w/ Epilepsy, News