Category Archives: Uncategorized

If I cannot respond…

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This post is part of the Epilepsy Blog Relay™ which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!

It’s hard to take advice from a doctor younger than me.  I still feel young.  My new doctor was in grade school when I started my education on epilepsy, twenty years ago.  I am not a doctor, but I am a specialist.  I have the inside track, I live this seizure life.  I know the many treatments.  I have been on many medications and have read many texts on epilepsy.

Nobody knows why I have seizures.  After nearly 20 years, and well over 20 tests, they have no clue.  Doctors offer to run more tests to see if I am a good candidate for surgery.  I do not want surgery.  I’m not willing for you to idle around inside my brain.  I don’t accept that risk.  I will live this life with its ups and downs.  My brain will remain untouched.  I don’t want to lose the ability to write or speak or walk and still have seizures anyway.  Surgery is no guarantee.  

I speak to brain surgery survivors.  Many are still having seizures and are still on seizure meds.  I do not accept that risk.  It’s not enough for me.  I am unwilling to have someone poke and prod around in my skull.  I’m sorry, that’s not for me.  I’ve mentioned it many times, to many people.  My doctors still offer me every six months, “We could put you in the monitoring unit and do a surgery consult.”  Doctors don’t know why I have seizures or where they originate from.  How can you treat that with surgery?  I do not want someone to take a melon-baller to my head and scoop out a piece of my brain.

I have had many surgeries to remove many things: ovary, uterus, gall bladder, two c-sections.  But I will not let you investigate my brain, hoping that you will find the right spot where my seizures allegedly originate from.  The risks are not worth it to me.

How many times must I say no?  What will happen when I can’t say no?  There’s nothing scarier than hearing people talk about you and ask you questions and you can’t respond.  I want to respond.  I’m a good girl, a former straight-A student, the geek who sat in the front row and asked questions.  I will answer anyone anything.  Unless I am having a seizure…  Consciousness is a slippery fish.  I can’t hold it in my hands for long without it flipping out and smacking me in my face.

Once I woke up in the MRI tube, it was so loud and the gravity was making me feel like I was moving underwater.  The knocking pounded into my head like nails.  Even writing about it now hurts my head.  Sounds can HURT.  That time they only gave me Ativan and ran a few tests.  Nothing terrible happened.  They didn’t let my husband take me home until I could tell them why he wanted to take me home.  Which was because I wanted to go home.  Finally five hours later I could talk and remember my middle name and correct age.  It was five long hours when all I wanted was to be home in bed.  But I couldn’t tell anyone.  They didn’t listen to my husband.

When I could talk and begged to be sent home, I was given a one-page printout from Web MD about seizures.  They told to get some rest.  They didn’t not give me any new information.  20 years of tests have remained inconclusive.  Seizures are unpredictable and NO! I don’t want surgery.  Why won’t they stop asking?  I worry what may happen when I can’t say no.

#EpilepsyProblems

 

NEXT UP: Be sure to check out the next post tomorrow by Danielle Watkins at Bus Fair for more on Epilepsy Awareness. For the fullschedule of bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET

 

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The Fight Grows On

 

FemaleCannabisClusterThe buzz has not worn off.  Pennsylvania House of Republicans passed medical marijuana!!  This is really happening!!  So many people told me, “PA will be last.”  We proved them wrong!  We have won a great battle.  The war wages on.  There are many Pennsylvanians left out of Senate Bill 3.  Smoking is prohibited.  We can have oils and tinctures, liquids and edibles, but not grow our own plants.  It is not a perfect bill.  Some say it’s not as good as SB 1182, which was the first medical marijuana bill the Senate passed in 2014.  The House let that die.  I had serious doubts that the House would ever vote on SB 3.  I am happy to be proven wrong.  I am happy to have a new baseline to work from.  Things can only get better now!

Medical marijuana is one step closer to my ultimate goal of full legalization.  Chairman of the Health Committee Matt Baker argued against this bill in part because activists want a complete end to prohibition.  He would like to help the sick, but the risk that some people might want full legalization was too much.  Representative after representative got up and spoke about the heroin crisis our state is facing.  Matt Baker claimed that marijuana “primed the brain for heroin.”  He spoke over and over again attacking the bill from opposing sides.  He made me yell and cry and then laugh my butt off.  He told a dramatic story of a building collapse leading to the death of a man who was “diagnosed with marijuana.”

My blood boiled when he said that he had a letter from the “American Epilepsy Society” begging him not to pass SB 3.  I don’t know who the American Epilepsy Society is, but they sure as hell don’t speak for me.  They are not the voice of epilepsy.  The Epilepsy Foundation is.  They are all on board.  Anything that reduces one seizure, one second of one seizure, is a miracle.  A miracle!!

Matt Baker wanted you to believe that the epilepsy community is against medical marijuana.  He’s a liar.  I am active in the epilepsy community.  I know all the groups.  I never heard of the “American Epilepsy Society.”  They are not a real epilepsy advocacy group, just a name that sounds official.  Everybody who knows anything about seizures is 100% behind medical marijuana.  Anything that helps.  Anything.  I am so relieved to no longer be a criminal.  I’m just a patient who wants to feel better.

So what is next?  The bill is not perfect, no bill ever is.  The Senate has to agree to the changes.  The governor promises to sign.  Then the grass will start growing.  We can figure out things as we go. Currently SB 3 allows for treatment of HIV/AIDS, seizures, epilepsy, autism, sickle-cell anemia, Crohn’s disease, cancer, ALS, PTSD, MS, Parkinson’s Disease, inflammatory bowel disease, damage to the spine and nervous system, neuropathies, Huntington’s Disease, chronic pain and glaucoma.  I believe the list will eventually expand.

What does this mean for Erie County?  That depends on whether we want to be part of the party or not.  There will be hundreds, maybe thousands, of jobs created in growing, producing, and distributing marijuana oils.  I see no reason why we shouldn’t be at the forefront of this.  We have empty buildings just waiting for something to do.  We have fresh water and empty storefronts.  We have thousands of sick citizens of Erie County who will want medicine, as soon as possible.  It’s already too late.  We can’t wait any longer.  Permits will be given, licenses will sold.  Doctors will have to take a brief class on medical marijuana.  All this can start happening as soon as next week.  The movement isn’t over, it’s really getting started now.  All the years of hard work are finally paying off and the real work can begin.  Sow the fields and plant the hemp and marijuana that will grow our economy.

Now is the time to act.

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PA Goes to Pot!

 

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Wednesday, March 16, 2016 was a historic day for my Commonwealth!  Medical marijuana, which has been growing moldy in the House basement, was taken out and given the light of day!  Senate Bill 3, The Raymond Shafer Compassionate Use of Cannabis, was finally voted on in the House of Representatives.  It passed 149-43.  Medical marijuana IS coming to Pennsylvania!  The Senate has to concur with the changes the House made.  Then it’s on to Governor Wolf’s desk.  He promised to sign whatever time, day or night, that the bill hits his desk.  He was there for the vote and tweeted “Now is the time to act!”

Senate Bill 3 passed in the Senate with a vote of 40-7 in May 2015.  The House tried their best to kill it.  They sat on it and did nothing.  The head of the health committee was against it, so it didn’t have to get heard.  Rep. Matt Baker wanted to kill medical marijuana.  He failed.

I cried like a baby.  I bawled.  My cats gave me odd looks.  My kids didn’t quite know what to think.  Why was the boring political TV making Mom cry so much?  I felt relief like I have never known.  My state finally believes in me.  All these years, all I wanted were less seizures.  My state said no.  Yesterday, they said YES!  It has been such a long road, covered in seizures and bumps and bruises and blood.  So many activists died while waiting.  The end is finally in sight!  PA has been languishing in prohibition for far too long.  All of that is drawing to an close.  The light at the end of the tunnel is bright green!

A great pain rose off my chest when the vote came down.  The cloud lifted and the haze cleared.  I’m not a criminal!  I don’t have to  move to Colorado!  I can stay here and get the treatment I deserved.  I’ve cried about it so many times.  Now they are tears of joy and relief and happiness.  Treatment is within reach for me!  I am satisfied I will be able to get my precious medical card.  I’m an epileptic.  I can’t stay conscious!  We should all know this by now:  Marijuana reduces seizures.  This law is for me!  Of course, the fight is not over.  There are many people who are left out.  I promise you, I won’t stop fighting for you. Now we can be healthier while we fight.

As if all this wasn’t enough, Industrial Hemp Senate Bill 50 passed the Senate 49-0.  We are on our way to join only a few other states who allow hemp to be grown on large agricultural scale.  It is a legal crop.  Let’s grow some hemp!  It will be a lucrative crop for our state.  Hemp has a few more hoops to hop through.  They need to get a hearing in the House.  The House is a lot less friendly than the Senate.  They stonewalled medical marijuana for YEARS!

It may take years to get Pennsylvania’s programs running.  Not everyone is happy with SB3.  I’m giddy for the baby-step in the right direction.  Two steps forward and one step back is still one step ahead.  It has started.  It cannot be undone.  We are not a pioneer in this fight.  Pennsylvania is late to the game, but we’re here now~!

In the meantime, we need to educate our doctors.  We need to let them know they will be protected when they prescribe medical marijuana to their patients.  We need them to know why they should.

Today we celebrate!  The tides have turned.  They are green and foamy.  Pennsylvania will be growing marijuana and hemp.  Hemp was once our major crop.  (Why do you think there is a town named HEMPFIELD?!)

We are bringing hemp back to Hempfield!  

We are bringing compassion and cannabis to the sick and hurting!

Please remember who voted against compassion and vote accordingly.  Election Day is April 26th.  Many House seats are up.  You can check the vote here.

To all the Haters who said we couldn’t do it:  Put this in your pipe and smoke it!  Enjoy this picture of The Capitol Building lit up green in honor of SB3!

Th House goes GreenWe weren’t last!

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My Land of Confusion

leelas not sure

 My brain has this evil trick it plays on me.  I know the pattern well enough by now.  We call it temporal lobe epilepsy.  People are always asking me questions about seizures.  I answer to the best of my ability.  Sometimes I physically can’t answer, “Hey, I’m an Epileptic.  This is no big deal  for me and I want to go to bed.”  My brain is wired so damn weird.  Give me a little time to find my way out of the land of seizures and confusion.  I’ll swim back to full consciousness soon with another story from the depths of semi-consciousness.

Most of the time I am not trapped in my body and I like to talk.  I am a Chatty Kathy, even though I hate it when people call me that.  Ask me anything; I will happily ask you anything.  I don’t want to talk to anyone after a seizure.

Ambulances and hospitals are terrifying when you don’t know where you are.  I have had that happen to me enough times.  I am happy to go to the ER if I have a real emergency.  But not because I cannot remember my middle name or even if I am unresponsive.  I slur my words and bump into things.  I vomit.  Eventually I rewind and I can talk.  Look how well I am writing now.  Ask me anything!

I have had epilepsy my whole life, I have known for nearly twenty years. The diagnosis has been the same since 1997.  We don’t know why you have seizures.  It just happens sometimes.  The first time I woke up in the ER was the last time an ER doctor gave me information I needed.

The post-seizure ER experience is always the same, flying down the hospital halls, the lights piercing my brain like an ice pick.  I’m not claustrophobic, except when I wake up screaming in pain from the noise and I have no idea why I am in the Hell-Hole of a CAT scan tube.

Every seizure CAN be an emergency, but every seizure is NOT an emergency.  Please don’t call 911.  It feels like a punishment to me.  The sound is too much.  Give me time to come out of it.  It might be an hour or more.  That’s my normal.   It is a long climb out of the abyss.  It’s The E Life.  It’s My Life.  Epilepsy is a weird disorder or disease, whichever you prefer to say.   I know there is a risk of more seizures due to every single seizure I have.  Seizures beget seizures.  I also have a 100% Seizure-Free Tolerance.  Sometimes works out to be more like 80% Seizure-Freedom.  I’ll take what I can get.  30% of epileptics never gain complete seizure control.

Even when I’m not fully conscious, I’m still in there somewhere, lost in my brain.  I’ll be back soon.  I will eventually know what year it is.  (The last time a paramedic asked me that question while I was still coming out of a seizure, I said it was 2007.)  Please wait, my confusion will clear and my brain will land back in reality.  I hope.

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Dead Lines

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I am a Fool for the legislative process.  Or rather a FOOL for the dream of what it could be.  When I watch the nitty gritty what actually goes on I want to lose my mind.  It angers me.  I’m not even talking about the theft and graft and misappropriation of funds and political fighting, the entire process is just so painfully SLOW.  They don’t get anything done because they don’t ever work.  The Pennsylvania General Assembly is in session maybe thirty days a year, if we are lucky.  (I am being kind)  When they are in session it is bulky and slow.  NOTHING GETS DONE.  I have been watching my recent state government on-line and on TV.  Something I cared about got put on the docket.  SB 1182 The Raymond Shafer Compassionate Use of Cannabis bill.  I can’t stop watching, it’s my Sunshine Law Right to watch.  It pains me to watch.

They get nothing done.  I watch it LIVE as is my right.  It is live and it is ridiculous.  The PA House of Representatives starts with a prayer, which is not what I expected from a House built on “Separation of Church and State.”  I’m an atheist but I’m not opposed to prayer.  Still…  I don’t think it’s exactly appropriate.

They had a prayer first and then a long-winded roll call followed by a rundown of what they were supposed to do.  Then The Speaker of the House spent half an hour introducing the guests in the Rotunda for the day.  I don’t care.  You are there, good for you.  Then there was too much time spent on minutia like naming bridges and designating days and weeks in memory of people, places, and events.  And diseases.  Okay I admit I was happy when they gave my own disease Epilepsy an Awareness Day.  But it shouldn’t take so long.  Do we need to have so many?  And shouldn’t the Townships and local governments do the bridge naming?  At least speed it up.  It was frustrating to watch. Then they were done and went to recess for the week.

It was one and half hours of nothing done.  One and half hours, that’s it.  It was Thursday.  (Of course House Reps and Senators shouldn’t work on Fridays.  Not Wednesday either, since they are constituent days; the one day a week they listen to the will of the people in their local offices.)  Basically all of the time was spent on roll call and welcoming the guests.   And then The House was at rest until the next Tuesday. It was a huge waste of time and tax-money.

Nothing or matter or consequence was discussed during their one and half hours of “work.”  Of course I use the term “work” only in loosest sense of the word.

Fast forward to today, June 30, 2014, the final day of Session before the General Assembly has a nice, long, summer vacation.  It’s a Monday now and they have had spurts of activity, an hour or two at a time, ALL weekend long.  They are the premier procrastinators in the entire world!  Everything must get done by midnight!  Now is the last chance to do something of actual consequence until SEPTEMBER 15th.  I’m not against a long Fourth of July vacation, but September 15??  Isn’t that a bit excessive?

If they had worked just a few more hours sooner, worked until 4pm on a few days, they wouldn’t need to work on a Sunday like they did last night.  And again, I do mean “work” in the loosest sense of the word.  But it might actually have consequence today.  Maybe.  We will see by midnight I guess.

If not, all of my hopes and dreams for The Will of the People will be on hold until September.  No more discussion of Bills that could save lives.  Children and adults will die in the meantime.  I hope I don’t.  No really, I do mean “die” in the most stringent meaning of the word.  I’m not hyperbole and hype.  I’m telling you the truth.  Epilepsy kills 50,000 Americans each year.  Fifty thousand of my Epi Friends die because of epilepsy and seizure related deaths this year alone.  The first person I knew that died from epilepsy fell off a ladder when he had a seizure.  No more ladders for me.  Never.  I am bound to the earth and I must ask my kids to reach the top shelf.  It’s just one more risk to minimize.

I get Facebook posts nearly everyday from my many online Epilepsy Support Groups, reporting another death.  Children and adults of all ages are dying.  Babies, teens, adults, the elderly, we are all at risk.  We die in bathtubs and pools and car accidents and in our homes, falling down the stairs, or just sleeping in our beds.  Every seizure is a chance for death.  I hate to admit it.  But it’s true.

I just want the chance to try a medicine that is stopping seizures now and has been for THOUSANDS of year.  There is lots of medical evidence.  This is not new evidence.  One of the Queens of England (Victoria or Elizabeth I, you can google it) used cannabis for treatment of her own seizures.

And if SB 1182 doesn’t get passed in the Senate today, it won’t even get talked about again until September.  We don’t even have the Governor on board or all of the House, but the Senate keeps saying they will pass it, they can pass it.  Then pass it!~  Today!!!  That’s the next step and it needs to be taken TODAY.

When The Pennsylvania General Assembly says their prayer, I hope they pray for compassion and actually vote for it too.

 

 

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My Grandmother’s Deathaversary

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It’s been a year since my Grandmother died.  She died one year ago today.  She went into the hospital only a few days before.  She was lucky that way.  She was healthy and able up until the end.  I had seen her only days before; she was sitting in her home talking about the thirties.  I told her she was the strongest person I knew.  She brushed me off.  I’m glad that I got to tell her.  Then my grandmother and cousin and I talked about Christmas.  I asked about what I should bring to Christmas Eve.  Her answer was a wave of a hand and, “Whatever you want.”  Every year for my entire life, we had gone to my grandmother’s house on Christmas Eve.  Last year was the only year that we didn’t.  She was buried only a few days before.  I didn’t know that we had already celebrated our last Christmas with her.  I would have remembered more of Christmas 2011 if I had…  This picture is from then, I’m glad to have it.  My memories of the years of Christmas Eves at her home are all overlapping.  I can’t remember what year things happened in. But they always happened at Grandma’s house.

I am convinced that December is the worst month to lose a loved one.  It’s always terrible.  But right before the holidays is just brutal.  Last year I spent the days before Christmas crying, watching my Grandmother die.  It didn’t seem like a holiday.  I keep hoping nobody dies this December.  Even though she was gone last Christmas, it still somehow feels like this is the first Christmas without her.  It is the first Christmas that we know in advance that she will not be there.  No pierogies, no Christmas cookies, no tales of Christmases past.  We will actually have all of that.  Just not with her, and not from her.  I regret so much that I never made pierogies with her.  I cooked with her on occasion, she taught me to make her noodles.  But I should have written it down.  One of the first things I did in the weeks after my grandmother died was to copy some of her recipes.  How priceless they had become!  I never thought I would so acutely miss food.  What wouldn’t I give for one last Christmas cookie, a thumbprint or a pizzelle?  I wanted to go into her house and raid the freezer.  It is not her home anymore.  I no longer have freezer privileges.   There are no more frozen treats for me.  No more borscht or broccoli soup.  No more pierogies, made by the hundreds at a time and frozen for future use.  I have dreamed that there were pierogies still in the freezer.  There aren’t.  I am so thankful for all of the times she fed me.  She was an excellent cook and always put so much love and work into her food. She would cook for hours before we came over for dinner.  Every Sunday.  I didn’t appreciated it enough as a child.

Luckily for me, my grandmother lived until the ripe old age of 97.  I had many years of adulthood to appreciate all that she gave me just by being there.  Still, I thought I was going to have a few more years yet.  I thought for sure she would live to 100.  I thought she could someday be on the Today show, the oldest woman in America.  She was so strong up until the very end.  She went peacefully.  As peacefully as death can be.  She died in her own bed surrounded by her loved ones.  We held hands and hugged and wept and prayed over her as she died.  She would have been so proud.  My last gift to her was the Hail Mary.  What a lucky death.  If only everyone could live a long full life and die surrounded by family!  It is what she would have wanted, with so many of her non-Catholic “heathen” granddaughters praying for her.  “Pray for us sinners now and at the hour of our death.”  We did.

She is everywhere now.  I almost wrote her name down on my Christmas list.  I’ve nearly picked up the phone to call her more than once.  And I wish that she was here so I could ask her if my son was like her youngest son as a child.  Just for future reference.  So I can keep the matches well hidden.  (Wink wink to my uncle. She never held it against you.)

I am glad for all the stories she told me.  She was more than willing to talk about the twenties and thirties and forties like they were only yesterday.  She was quick to share any story you asked about.  Even the grimmer stories, she shared.  Perhaps it was the G or PG version of the past.  I now see that.  But she told me anything I asked.  Lucky for me I am an asker.  I always have questions to ask.  Some people find it offensive, or so I have been told.  I guess not everyone wants to reveal personal things about themselves.  But, if you don’t ask, you won’t know.  So I ask.  I like to know everybody’s stories.  My grandmother told me anything that I asked.

She actually told me a story that I hadn’t heard before on our very last visit in her home.  Or rather she told me a story I had heard many times before, but there was a revelation that changed everything.  I never knew that my eldest uncle was alive when my Grandmother’s first son died.  Somehow I never knew that timing before.  I always assumed he had not yet been born when Peter died.  When I realized my uncle was alive, it changed everything.  I knew now how she survived losing Peter.  I had wondered that for years.  My uncle, just a baby, kept her alive.  I thanked him for that at the funeral.  She was a tough old lady she really was.  She survived so much and truly kept an open heart.  I wish I had more time with her.  But we did have a lot of time together.  35 years.

I was lucky.  I lived in the same town as her for most of my life, college years excluded.  I am so thankful for that.  I have hundreds of stories and memories over the years.  She came to every single one of my birthday parties and my childrens’ birthday parties.  ALL OF THEM.  She had come to my son’s birthday party only a month and a half before she died.  She had to come in the back door since there were less steps.  She was never able to come in the front door of my home.  She had long since stopped going upstairs to her own home.  Years.  A decade or more?  She couldn’t handle the steps. She had no cartilage in her knees and her achilles tendons were shortened.  She should have been wheelchair bound.  She only rarely submitted to this horror in the end.  She used a cane, but should have used a walker at least.  She told me she was afraid if she used a wheelchair she would never stand up again.  I understood her fear.  I respected her resilience.  But I really wished she had submitted to some help.  For her own sake.  She could have been relieved of at least some of the pain involved in walking.  But nobody could tell her anything.  Why should we?  She far outranked all of us.  97 years offers you wisdom and respect.  Plus she was humble and pious and totally had God on her side.

She was what the Catholics call a saint.  No, really.  She should be a saint.  She made over 47,000 rosaries to be given to the children of the Roman Catholic Diocese of Erie.  47 THOUSAND.  That’s alot of prayer.  She met two Bishops.  Right before she died, she met the new bishop and he thanked her for her service.  He told her she was a blessing to the community.  She was at peace with her God.

Because of her I am here and so are my children.  Without her struggle and labor and love and salvation, I would not have been born. Because of a single woman there are now 26 new people in the world.  My grandmother had 7 children, 12 grandchildren and 7 great-grandchildren.  So far.  She was so proud of us all.  I am so proud of her.  I marvel at all that she lived through.  I miss her everyday.  Especially today, the day the world lost a saint named Helen Elizabeth August Trocki.  I like to believe in heaven for her.

Thank you for everything Grandma.

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