To Sleep, Perchance to…Feel Better?

“Sleep is the interest we have to pay on the capital which is called in at death; and the higher the rate of interest and the more regularly it is paid, the further the date of redemption is postponed.” 
~Arthur Schopenhauer


Are you sleeping?
Man, I feel awful.  Some days are bad, some days are worse.  Headaches and stomachaches against the backdrop of fatigue.  My sluggishness began about five months ago and has become progressively worse.  Medication doesn’t help and caffeine only helps in the morning.  After listing everything I could possibly think of, my doctor pinpointed sleep – or rather, my lack of good sleep.

We all know that to be healthy, you need to get sleep.  But lack of sleep also impairs the body’s ability to digest food.  Melatonin is associated with our sleep cycle, but it also works to regulate digestion.  Sleep deprivation means that the hormones melatonin and prolactin, produced in the middle of the night, are not able to do their job of enhancing immunity.  Immunity clears up toxins in the gastrointestinal tract.

Ironically, my stomach pains wake me up in the middle of the night.  At least three times during a night.

What started my sleep problems?  Stress.  I may not feel stress in the conventional sense, but circumstance has added a whole new plate issues to learn to deal with, whether I feel stressed about it or not today.  Stress hormones lead to insomnia and sleep disturbances.  My attempt to regain sleep by focusing on and dealing with the emotions associated with my stressors – apparently causes more stress.  A study out of Tel Aviv University found that subjects who focused on their emotions and anxiety shortened their sleep cycles.

Ironically, lack of sleep, stress, and stressing about lack of sleep, have also caused vivid nightmares and sometimes night terrors, which also wake me up a few times during the night.  What wards off nightmares?  Getting good sleep.

When the morning finally arrives, I am exhausted and dealing with fresh headaches.

Months of exhaustion and just feeling sick can cause depression.  Guess what?  Depression causes sleep issues and digestive problems.

So, I am trapped in a vicious circle of cause and effect.  I am sick and tired of feeling sick and tired.

It will take time, and a lot of work for my body to return to a healthy balance.  But being healthy, and more importantly, being myself, is worth the work.



The 28th Year

“The years teach much which the days never knew.” 
~Ralph Waldo Emerson

My 27th year was filled with great change and new challenges.  I changed jobs twice, moved twice and got a puppy.  Oh wait, that last one is slated for this next year, along with moving out (again) of a one bedroom apartment.

I took every opportunity that God presented to me and took great risk.  I mark my birthday in the midst of getting on my feet and feeling secure.  This past year has brought adventure.  That would be an understatement, actually.  With the love of my life, I have put my wings to flight and found so much “new.”  New is exciting, adds to experience, but also adds challenges.

I know myself to be a tough cookie.  I have a strength to take on challenges that present themselves to me, with the repetition of “This too shall pass” in my head.  What I was not prepared for was that this past year presented unprecedented challenges to my family and the people I love.  New and recurring health battles for my family and myself, along with the stress of finding stability in the “new” has left me emotionally and physically drained.

I needed to take today to stop the whirlwind of worry around my head and try to find meaning in it.  When my mother was 28 years old, she married the love of her life, my father.  In the next year, I plan to marry the love of my life, and build a foundation with him.  I am so grateful for Fiance.  This past year has taught me that you can lose important pieces of your life in an instant.  Relationships can change, money can disappear.  I have learned that I must cling to the important people.  My family, my friends and Fiance, my partner in everything.  Even Dublin.  I’m not going to fret that a wild bird of prey will swoop down upon our tiny balcony (at the exact time that I let Dublin outside to hunt for pine needles) and grabs him with his giant claws and whisks him away to be devoured.  No, I will just hug Dubbers every day and not dwell on his feline fragility.

The same applies with everyone and everything.  I will appreciate what I have while I have it.  Each moment and each day of my 28th year.



Rebel Child

“Health food makes me sick.”
Calvin Trillin

My mom used to let me lick the beaters.  I really loved fluffy sugar butter back in the day.

After my dad was diagnosed with type 2 diabetes, my mom learned to cook healthier.  Then I learned as an adult to bake healthier.  But, it is always much more fun to cook guilty pleasure food.  The rich, the decadent, the “so bad it’s good” items.  Why?  Because people love you more.  Love and adoration for the cook comes easier when food is rich.  I speak truth!

In college, I decided to pursue a healthier lifestyle, starting with what I ate.  It came in stages, but my meals slowly became more organic, less meat, less saturated fat and full of whole grain goodness.  Then I became a veggie (lacto-ovo vegetarian is the more”annoying to other people” term), so I am on my own in most cases now.

My mother (see previous post) opened a true to form diner, so the food served is comfort food.  She serves healthy options, and you can actually order the food any way you want it (egg white omelette with fresh veggies, please!), but ironically, that’s not what people come for.  My mom sells a lot of gooey cinnamon rolls.

I had a dream I ate french fries from Sonic and woke up nauseated.  I savor my protein pancakes, my soy grilled cheese sandwiches and my baked tofu.  To me, deliciousness.  To others, I have hypersensitive taste buds, because everything I eat apparently to them tastes like newspaper.   I am the rebel child.

My mother creates rich decadence, pleasing to the eye and palate.   My mission is to create healthy food that tastes delicious, too.

Will I be successful?  I have had some successes in the past.  Check back for some of my experiment results.

The Geek in Me: My Summer of Star Trek

“Space… the Final Frontier. These are the voyages of the starship Enterprise. Its continuing mission: to explore strange new worlds, to seek out new life and new civilizations, to boldly go where no one has gone before.”
— attributed to various television producers, including Star Trek creator Gene Roddenberry

Needless to say, I blame my mother.  Needless to say for those who know my mother.  For those of you who don’t know my mother:  It’s her fault, and this is why.

When I was growing up, Mom demanded we watch her television shows.  I was held captive, and had no choice in the matter.  (My mother might argue that she deserved a few hours of her fave shows after hours upon hours of Disney movies on repeat, Animaniacs and Super Mario Bros.  Whatever Mom, this is my blog, I am the victim/hero.)

Mom loved Star Trek:  The Next Generation.  So, late in the afternoon, early in the evening, we would cozy up in our old recliners, and I would huff and puff.  The opening scenes and the opening credits would pass, and I was hooked.  Dad would undoubtedly walk in from working outside, ask if it was a “good one” and Mom would say, “Oh yeah…”  Before Mom could describe the intertwining relationships of the crew, the threat from strange new worlds and Data’s new step in coming more human, Dad would already be halfway back out of the door.  This was a ritual that never changed.

When the movies came out after the series ended in the mid-nineties, Mom would drag me to them.  I was held hostage.  Mom might counter, that she deserved to pick a movie once in a while because, like all mothers, she rarely got to see anything not labeled “kiddie.”  So she went with geeky, not kiddie, and my young mind was forceably molded by Gene Roddenberry’s vision of the future.

After the last Star Trek:  The Next Generation feature film, I remember we cried.  I know it was partly because of the storyline, but also because it also marked the ending of my childhood in a way, as it hit theaters when I was a bit older.  (Disclaimer:  I bawled during Toy Story 3 for this same reason, although I was way older than “entering adulthood” when that movie was released.  Omigod, I’m getting misty right now just thinking about Toy Story 3.  Andy saying goodbye…playing with them one…last…time…)

Well, all my television shows I became addicted to last year went on HuluPlus hiatus as the summer hit.  Nothing is not Netflix…EVER.  Then, I saw Star Trek:  The Next Generation.  I thought I would watch the pilot for kicks and giggles.  It was like watching a badly acted play.  Three months later, I’ve watched all seven seasons.

It’s funny how you don’t realize you’ve turned into your parent until moments like these.   Some episodes gave me flashbacks of sitting with my Mom, and I could even hear her gasp, or mention how beautiful Marina was, or whisper, “Poor Data.”  I felt like I was bonding with my mom this past summer even though she is hundreds of miles away.

I even recruited someone to join me in my Geekdom.  Smee* huffed and puffed when I started watching the series, but when I would ask him what he wanted to watch, he would say, “I don’t know, uh…just…whatever you want…just…let’s watch Star Trek.  I don’t care.”

Haha!  Busted, Smee!  Your geekiness now goes beyond gamer geek!

Instead of trying to be super cool, I decided to embrace the geek in me.  I am already super cool, and the geek part of me only adds to my well-rounded awesomeness!  The show is so much fun, I would be a total snob by denying it.  And if, Reader, you are thinking, “Omigod, you are so cheesy for watching that show” I rebut that NO, I am not cheesy for watching the show.  I get my cheesiness from Dad.  There’s a difference.  Mom is the reason I watch Star Trek.  Dad is the reason “Until the Last Teardrop Falls” by Freddy Fender is on my iPod.

So, now I have watched all episodes of STTNG.  I’ll give you time.  Did you get the acronym?  Okay, can we move on now?

Now that I have watched the series, I am a bit sad it is over for me again.  Now I’m watching the movies.

*Name has been changed to protect his geeky true identity. 

Until They’re Found

“Your life does not get better by chance, it gets better by change.”
— Jim Rohn

My last day of work at the JDRF office was incredibly weird.  It felt like I was cleaning out my locker after graduation.  For the first time in over six years, my inbox was…empty.  When I walked out the door after 5pm, the theme song from Cheers became stuck in my head.  I’m going from an office where everyone knows me to one where I’m the new girl.

Like high school, though, I had a case of senioritis at JDRF.  That feeling of needing to grow and learn more.  I didn’t make the decision to leave because I grew tired of the mission.  If nothing else, I am more excited about our progress and the future of diabetes management therapies and technology than ever before!  I simply had smushed my face against a professional ceiling (which becomes very uncomfortable after time) and then reached the conclusion that I would make a better impact on our mission as a volunteer than as a paid staff member.

There are so many things I feel I should know about my career, marketing, that I do not.  A chance to learn and apply can only be found through deliberate change.

Over my six and a half years with JDRF, I have met so many that have become family to me.  Whether they consider me family or not is moot.  They are the family I have taken hostage and claimed my own.  Expect me at family gatherings.  I’m the vegetarian holding a fruit salad.

Because of all the people I have met living with type 1 diabetes that are waiting for better until gone, I will volunteer and continue to be a part of an organization pursuing better treatments, cure therapies and a future free of type 1 diabetes.  That one shot cure does not exist, but steadily cure therapies will contribute to cures.  By no means soon, but by no means impossible.  I am one of the ones that believes in cures, and I am one of the ones that believe we need them.

One thing I have learned is that disease plays a different game in each person.  I can currently control my epilepsy with one type of oral medication and routine.  Others cannot, battling seizures daily and losing part of their independence.  Some with type 1 diabetes have blood glucose levels more in range more often, are able to accomplish much more than others who work equally as hard and cannot achieve “control.”  Disease can inspire you and it can burden you.  For those who are burdened more than others, we must continue to fight and not pretend that disease can be conquered only through positive thoughts and a lecture.  Quality of life must continue to get better for everyone, until there is no enemy to fight.

I pray this new career will bring growth and fulfillment.  What I know it will bring is new experiences, which are necessary.  I will be working with a reputable company to market nutrition, health and wellness.  Along the way, I hope to become more healthy in mind and body, and therefore able to give more back to my family.  All my family.

A Life in Yoga Pants

“Leisure only means a chance to do other jobs that demand attention.”
~Oliver Wendell Holmes, Jr

I must admit, I often envy the women in yoga pants.

You must be aware of the ones to which I am referring.  The ones sitting (in yoga pants) at a coffee place or cafe, on a weekday at 10am drinking iced coffee and smiling.  Probably just finished an invigorating yoga session (or yoga sesh) to begin the rest of their day…in yoga pants.  I glare at them from my car on my way back to the office.  I, wearing heals and slacks, with jealousy in my heart and curiosity in my mind.

What do they DO all day?  I know they strive for perfect posture, while I predict my future with a hump from sitting at a computer for most of the day.  Except when I run out for work errands or meetings and slouch in the car.  Will they exercise more later?  I do tricep dips from my office chair.  I usually stop after one, because my chair is on rollers, so this practice ends in minor head injury.

When I am driving on my way to work and I see them power walking in pairs, I wonder what I would do if I didn’t have to go to work?   My workouts would be later, I could volunteer, get all my domestic errands and chores done during the day, have another afternoon workout, read, write, plan vacations…all in my comfy yoga pants!!  (In my fantasy, I don’t have children yet because that would be the equivalent of multiple full-time jobs.)

But then…

How quickly would I get bored?  I would need projects and other things to do, and since I am not crafty, I would have to volunteer more, and then that would lead to me feeling tired after my days of volunteering in an office, which would lead to me reading, doing errands and chores and working out early in the morning or in the evening…so…

My yoga pants would eventually be folded up again for my 30 minutes in the early morning of  in home yoga.

But I can’t help it.  I still envy the women who wear yoga pants between 9am and 5pm on weekdays, and fantasize of a spirtual and physical rejuvenation (and better posture) achieved by a leisurely life in yoga pants.

Transforming Lives

Come unto me, all ye that labour and are heavy laden, and I will give you rest. Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. For my yoke is easy, and my burden is light.” — Matthew 11:28-30

I think I’m emotionally ready to write this post now.  Welcome to “Behind the Scenes.” 

Transforming Lives:  Diabetes Today and Tomorrow started out as an idea from a best practice from another JDRF Chapter.  That one large Outreach event that brings in as many people as possible because it only happens once a year.  It’s social, it’s educational.  When I heard it, I knew I wanted one for our Chapter.  Undertaking an event we had never done before was immediately deemed, “next year or the year after.”

Putting off a signature event seemed like a comfortable idea because we had never done one.  But it became apparent that we couldn’t know what it was like to host this event without hosting this event.  Also, well…people were not attending the other smaller events held in different areas throughout the year.  Attendance was dwindling…rapidly.  That pushed our Outreach Committee to say it was time. 

I found some great help in veteran conference Chapters, and they shared resources, gave great advice and followed up.  I started 13 months before the event actually planning it.  I had the go ahead from our volunteer Outreach Chair, our Outreach Committee, and I asked a few to be on the planning committee. I talked to National staff, recruited speakers. 

The initial excitement was…exciting!  I would get chills as our speakers were confirmed and as venue proposals came back lower and lower.  There was pushback because we weren’t charging people to attend…so no direct revenue.  This would be 100% giving back to the community.  Other events we teach people impacted by type 1 diabetes (T1D) how to fundraise effectively.  This one we would be bringing experts from outside our state into our city to teach people how to manage diabetes to the best of their ability while finding the motivation and support to do so.  Not to mention inspire hope in the research we together fund.

I knew this was a good idea.  I had people who believed in it (my committee and close volunteers).  I knew it would be hard, but I could see it!

As 2012 approached, I was burnt out.  The planning, the clawing and scratching for anything to move forward – it was weighing on me.  I was so over this event.  When I was asked, “How is conference?”  I would get this look on my face, as if they should know that I was building the locomotive that was about to run me over.  I thought this event was so logitically heavy, there’s just no way.

Thirty days out we had a committee meeting in which one of my dearest friends said, “Look how much you’ve done!”  This would be the healthy way of looking at things.  I was reassured many times that it would be great.  I love volunteers.  You have no idea, and looking back, I could not have done anything without the support of my committee, staff and friends.  At the time, my thinking was, I have 30 days to get a LOT done, or this conference is going to suck.  It’s going to be awful, and all of you will deny any affiliation with it.   Listen when I say, this is going to be AWFUL.  A-W-F-U-L.  So much, there’s just so much, omigod, so much.” 

My colleagues were buried under mountains of work with all our concurrent programs and responsibilities.  My committee – buried.  Everytime I had a call or meeting with a committee member we would talk about how tired we were.  I remember one meeting in which my friend and I just stared at each other blankly.  So much was happening at the same time for everyone.  It was insanity. 

I had to give it to God.  It wasn’t just task lists (I had about four pages a day), but the figuring out what my task lists SHOULD be that was stressful.  So, I prayed.  I started praying at my desk.  When my brain would turn off *click* I would pray and then keep going.  Suddenly, I could see my blessings and received new ones.

My number one volunteer spent countless hours with me.  Granted, he claims to be in love with me.  Wants to spend forever with me, but NO, I did not take advantage of his adoration.  Okay, I totally did.  To protect his identity, uh, let’s call…yeah. 

Smee started coming in every day after work to spend at least two hours doing paper assembly for 500 people.  I even gave him the task to checking the pen drawer.  We have hundreds (if not thousands) of pens in the office that lack caps or ink – we just didn’t know which ones.  Now, we do.  Thank you, Smee.  Smee also worked in the office with me on weekends.  He was there for the reception the night before and for the event.  He made airport runs, carried boxes, ran errands and told me he was proud of me.  He made sure I ate food and kept hydrated.  God must cherish my sanity,  because Smee is a blessing!

I had emotional support from my Twitter friends!  I even have one close to my heart that remembered the days until the “big day” and cheered me on!

A couple of weeks before the event, I had a list of volunteers, but just could not focus on this incredibly crucial aspect of an event.  I needed an expert, and my colleagues were even MORE buried!  Deadlines were tight around here.  So, one volunteer said that she had years of event planning experience and would be available to do more.  I met her at Starbucks, she took copies of everything and took it on.  I might have been the grande Starbucks, but right then and there I was euphoric.  I praised God.  This was a conference MIRACLE!

Tailoring a conference for one person 500 times over made me crazy.  Every single registration took time and focus, like a puzzle.  Finally, after what felt like years but was really 13 months, every schedule was customized, every printed material ready, lists assembled, staff trained and ready to go, and then Friday the 13th came and we welcomed our speakers and began setting up.  Lunch with a group of people I know by their books, stellar reputations and profile pics was surreal.  It’s quite a shame my brain was mush.  I would have asked so many better questions!  A committee member stopped me in the hallway and asked if I was okay, not in the way I was asked 5 bazillion times, but in a really concerned way.  “Yeah, just tired.”  I went to the bathroom and scared myself.  I looked awful!!  Bad enough to scare small children and to trick-or-treat for sure. 

The next day, in a suit that does not fit AT ALL (no time for tailors), I prayed God bless this event.  It would take the hand of God working through the hands of all our volunteers and staff to pull this off.  There were so many intricate moving parts happening at the same time. 

I knew each attendee by name.  I knew if they had emailed me, I knew if they had dietary restrictions, I knew their connection, their schedule, where they drove in from.  So, when less than half of the people that registered actually came to the event, yes, I was disappointed.  After the event, I was pulling all the unused schedules for recycling, and I felt their absence.  Each and every one.  But that day, for those that attended, I felt such a sense of community.  I felt part of something bigger than myself.  A coming together to laugh and inspire and LEARN.  I love to learn.  I got hugs from familiar faces and got to meet new people.  All the stress gained and sanity lost dissipated in one thank you.  And I got more than one thank you.  All of us that believed in it saw the gratitude conveyed for one or some or all of the small moving pieces. 

I felt His presence, saw His hand in it.  We made a good start.  My cup runneth over. 

No Politics at the Table, Please


“In every dispute between parent and child, both cannot be right, but they may be, and usually are, both wrong. It is this situation which gives family life its peculiar hysterical charm.”
–Isaac Rosenfeld

“Speaking of mashed potatoes, Obama…”

“No, no, no, no, nah nah nah NAH!!!  Clock it, Mom.  We made it 17.4 minutes before President Obama joined us for dinner.  New record.”

What is that saying about how it is impolite to discuss religion and politics at the table?  I’m on the same page religion-wise with my parents.  In fact, I love talking about our relationship with God, as it brings us closer together. 

Politics seems to have the opposite impact nowadays, and I feel serious political discussions should be avoided altogether for the sake of familial harmony.  So, when my parents, let’s narrow this down, DAD wants to talk about the presidential election, I have to stop him.  Dead in his tracks.  Sometimes he gets as much out as “O” before I know where it’s going.  I’ll find anything to distract.  From food to what that cloud looks like (I’ve been desperate).

Our political views have diverged a bit.  I’m more in the center of the political spectrum, Dad is a good 26,814 miles to the right of me.  How did this happen?

I was raised in a very political home.  Politics everywhere.  Mom was a chairwoman of the Republican Party, organizing events.  As a child, I remember it as a blur of Mom, red, white and blue, and “GOP.”  Buttons, buttons, buttons.  So…many…bumper stickers!  I don’t think I knew what GOP stood for until I was in my teens!  All I knew is that even though I couldn’t vote, the candidate my parents backed was the one that had my FULL support.  Which for me meant not complaining to much about attending all the meetings, and plastering my shirts and sweaters with stickers.   As vehemetly Republican as we sounded, my parents were never straight ticket voters.  They took their time learning about candidates and their positions.  That is what I took from them, even though I have left the elephant stickers at the family home. 

One candidate, unquestionably, was always the best person for the job. Dad.  Dad spent 44 years in law enforcement, and many a time in an elected position.   Wow, I remember the smell of spray paint for the yard signs, door-to-door campaigning, debates, parades, meetings, more meetings and speeches. I can even feel the bumper sticker glue on my fingers when I remember those times.  Dad won many, lost a few.  He always said, “You don’t demand respect, you earn it.”  And he was a man not of empty promises but of action and his compassion for others is still so immense that it baffles me.  Somehow genetically engineered by God for public service, my Dad was the best for the job every time.  Disagree with me?  I  have a fist waiting for your face. 

So, outside of Dad, there hasn’t been a candidate that I would follow to the ends of the earth.  I look at who best aligns with my way of thinking.  I’m not a liberal, not conservative.  I’m a voting American. 

When I go home to visit my parents, FOX News is on…all the time.  They wake up to it, and they fall asleep with it on, leaving me to theorize that they are hypnotized in the middle of the night.  The constant flood of conservative pundits pulling my parents farther and farther to the right while they sleep!  When Dad brings up national political news, my eyes bug out of my head, and when I rebut, his eyes do the same thing.  We can’t debate we are so baffled with each other. We just start words without finishing them and stare at each other with our mouths agape.   But if we talk about his role in the community, in local politics, I can see that Dad still doesn’t follow party lines, he follows his beliefs.  And for that, in the realm of politics we usually disagree in, he has earned my respect, not just as his kid but as a voting adult. 

With our differences in political opinion, my father and I handle it the same way we handle most things – a sense of humor.  I send Dad Obama cards for every holiday.  He chuckles when I scream, “Don’t talk about politics at the TABLE!!!”

When he talks about how great Sarah Palin is, and I recite my sonatas on President Obama, we look at each other and laugh.  During this presidential election, I will prepare a list of diversions and buy my Obama shirt solely for my visit home, as I’m sure he will have at the ready every possible segway to Obama.  Because I mean, mashed potatoes, you automatically think of Obama’s spending, right?

My Storm Cloud

“No head injury is too serious to despair of, nor too trivial to ignore.”
— Hippocrates

I remember my last seconds of my life before epilepsy.  My great-grandmother had passed away, and my parents and I were making the three hour drive to help organize her belongings.  We stopped  for food.  I laid down in the back of the car.  My parents got out of the car.  Got back in.  Mom first *click* door closes.  Dad *click* door closes.

The next thing I remember were the first few moments of my life with epilepsy.  My mother had moved to the back seat, Dad was driving, speeding and swerving.  Mom had panic all over her face, and she was crying.  I asked her what was wrong, where were we going.  She told me we were going to the hospital.  I was shocked.  Why?  She said I needed to go.  Why me?  I was fine.  My heart started to pound in my chest.  This was a nightmare, this wasn’t happening.  When they sliding doors parted at the ER, nurses had a stretcher for me.  A stretcher!  There was a mistake, not me, what was going on?  Why were my parents in on it?  As they moved me to a bed, my dad grabbed my knee and said everything was okay.  They explained that I passed out and had a seizure.  No I didn’t.  Yes, I did.  No, I didn’t.  The doctor asked my dad about family history.  He said my older half-sister, his daughter, had epilepsy.  What?!?  No, she didn’t!  Then all focus came back to me.  I was shaking I was so confused and scared.  My whole body vibrated.  I started to understand that something was wrong with me when I realized that I didn’t know where I was.  Why were we in the car?  Why were we in a different town?  We were traveling?  When did all of this happen?  I kept asking questions as if I had entered a parallel universe.  Mom became noticeably worried.  I knew she was wondering if I had forgotten Nana had died.  I remembered that.  The doctor explained that short-term memory loss was normal, and it would come back.  Dad said everything would be okay, I would be fine.  Well, I had had enough.  I hate hospitals, being the one in the bed was a new and unwelcome experience for me, so I would be leaving.  The doctor said I needed tests, but that I should be fine to go.  I swung my legs around and hopped off the bed.  My legs were wet spaghetti.  Dad had to hold my elbows.  In that moment, I felt the split.  My body wasn’t mine anymore.  It had gone rogue, without my consent.  The shock wore off and I felt it.  Every muscle in my body hurt, my head hurt.  I had bitten my tongue pretty bad, and it was sore and stinging in my mouth.  Dried blood stained the corners of my mouth.

I was 14.

The tests that ensued made me feel like I was on the path to death, and they were just confirming it.  I’ve been through numerous rounds of tests since then, but the first round I remember as being the most scary, the most annoying.  Dad and his sense of humor and his fatherly obligation to make me feel safe, lifted my spirits.  Then my first neurologist called us in.  I had three oral medications to choose from.  All had side effects, but not bad, he said.  Two were the same, except one was extended release.  The other could cause severe liver damage, fetal deformities, but at 14, I was most threatened by excess facial hair growth.  Extended release it was.  Dad smiled and said, “See, all you have to do is swallow a pill a day, and you will be fine!  No seizures!”  As we left, my next appointment was put on a business card with a brain on it.  I was normal teenager, and then looking at that brain, I felt like I had a brain problem.

Our family doctor said it was best that I and my parents not tell anyone about my epilepsy, because of the stigma of the disease.  Epilepsy’s reputation, not it’s physical effects, would have more of a negative impact on my life, was the message we got.  So we didn’t.

I was 20 years old when I realized what absolute nonsense that advice was.  Eating one of my last lunches in Edinburgh before returning triumphantly seizure-free to my parents in the States, I had a seizure in a restaurant.  I knocked out my two front teeth.  That, and the giant blue bulge on my forehead were my souvenirs from face-to-tile impact.  Yeah, I was really upset about my teeth, and the embarrassment of seizing in a public place, but the look on my friend’s face haunts me still.  She was in shock, and scared.  She never asked to be put in this situation.  I should have prepared her for the “just in case.”  I didn’t trust to tell her, I thought she wouldn’t feel safe around me, she wouldn’t want to me friend.

In all fairness to my young mind, I still deal with the stigma of the disease, as does everyone with epilepsy.  I am fortunate.  If I had been born in the 17th century, I could have been burned at the stake for being a witch or possibly exorcised.  As I was watching an episode of Mad Men, I admit to judging a character who seemed to be a swindler, possibly a drunk or drug addict, taking advantage of his poor sister. What a loser, I thought.  He had epilepsy.  Unable to get work, he was forced to take small change from strangers and live on the road.  No one to call a friend.  Fifty years ago, I might have had a different world to face as well.  Now, when I tell strangers face-to-face I have epilepsy, their arms cross.  I usually get either a couple of steps backward or at least a lean backward.  Some people try to compliment me and say that I don’t look like I have epilepsy.  A couple of people began talking to me as if I had a developmental disability.  All of them seemed paranoid, that I would drop to the floor that minute and they’d have to deal with it.  To be completely honest, writing this blog post is making me uneasy.

All my seizures have been tonic clonic (also known as grand mal) with no warning signs whatsover.  For me this means I wake up in a place I don’t recognize, no recollection how I got there or what I was doing, and with a bitten tongue, sore muscles and a migraine straight from hell itself.  In thirteen years, I can’t tell you how many seizures I have had, not because they are so many, but because I was never in the mental state to take notes after having them.  First comes denial where I battle whoever is with me as they try to tell me I had a seizure.  Not only do I not remember, but admitting I had one means that I failed somehow.  Which brings me to the second step:  guilt.  Having a seizure turns me detective – why did it happen?  My medication wasn’t taken, I didn’t get enough sleep, I did something wrong.  After guilt comes further investigation into what I did wrong.  Very rarely is a reason found, which depresses me.  I have absolutely no control.  Complete helplessness.  I can take care of myself, and still have a seizure.  Anytime, any place, without warning.  Then I’m angry, depressed.

After one particular seizure, I came out of it with my boyfriend wiping a wet washrag over my arms.  I asked him what he was doing.  It burned.  He said I had a seizure, I thought no, because that’s not right.  He took me to show me the kitchen as proof.  When I got up, my knees almost collapsed under me.  Dammit, he was right.  I hurt, too.  I found my kitchen floor covered in glass.  The door to the stove was busted open.  Apparently, I had a seizure standing up, fell backward and my head hit the stove.   He heard the noise and ran downstairs to find me seizing in a pile of broken glass and blood.  Well, we needed a new stove.  I didn’t tell him or my parents that every step of getting that new stove made me physically ill.  I was not ashamed of my illness, of that seizure, but sickened that he had to see me like that, lift me from the glass and  toggle the line of waiting for the seizure to stop or calling 911.

The first seizure he had witnessed was a close call.  He found me slumped over in the garage, behind the wheel of the car.  Car was turned on.  He told my years later that he cried he was so worried.  I remember coming to, arguing with him about me having a seizure.  Then, as my short-term memory came back, I remembered I was on my way to church, and the very last thing I saw was my hand going for reverse.  So many close calls, that even after time has passed, the fear of what could have happened or could happen could stay with me, but I don’t want to live in a constant state of paranoia.

Dad taught me to think positively, to have a sense of humor.  I do have a sense of humor about my epilepsy.  One time, a piece of tongue fell off as it was healing right as I was talking to my boss.  I spit it into a Kleenex and said, “Whoops, tongue.”  It gave her chills and made me laugh.  Also, the fresh scars on the edges of my tongue were great when you are waiting forever at a restaurant.  I could have just told the waiter how hungry I was and stuck out my tongue.  Mom didn’t think that would be funny.  Having a sense of humor about it not only put others at ease around me, but it put me at ease and reminded me that one thing I can control is my attitude.

I have been seizure-free for over three years, thanks to a new drug.  I give thanks to God and the fact that now over 20 anti-convulsive medications are available to those with epilepsy.  Thank you medical science.  The pills I was taking for over 10 years were eroding my bones and hurting my liver, plus all the medications I was taking to combat the side effects of the drug also put a cramp in it’s effectiveness.   The pills that have controlled my seizures now are a “cleaner” drug as my epileptologist would say.  I feel good, I feel confident.  It has freed me.

Because I have a type of epilepsy I cannot grow out of, this chronic illness will preempt every decision I make.  If I have to take a new medication to improve other areas of my health, epilepsy comes first.  Going out, lights, entertainment, sleep loss, stress, work, relationships, illness – all can trigger a seizure.  An epileptic seizure is an electrical storm in the brain.  The way I think of it is that epilepsy can cause lightening, but all other times it looms over me like a cloud, following me wherever I go.  I have to make sure I am prepared for any lightening that could strike.  Constantly trying to avoid getting hit.  But just like those unfortunate enough to be struck by lightening, you don’t know if you’re going to be hit.  You just have to just keep watching the cloud.

Epilepsy is a chronic illness, and there is no cure for me yet.  I’m reflective enough to know that epilepsy has given me lessons about the importance of taking care of myself, empathizing with others, and the strength of finding yourself under a disease with an awful stigma attached.  Would I refuse a cure because of the lessons?  Hell, no on that one!  First, epilepsy has been a huge burden for my parents.  I’m an adult now, but they hate the idea of me being alone.  It is a huge weight for them, one they have carried since I was diagnosed.  If my child inherits epilepsy, I will be the one holding him or her, watching the blood trickle down their chin and their lips turning blue, praying that each second be the one where they take a breath and it’s over.  My child will learn to share their gifts, strengths and compassion with the world, but that they also have to do it under the context of epilepsy, that they will have to tell others, and the reaction of the world is something they cannot control.  Now, just for me, the worst thing about not being cured is the “what if.”

I had my hand on reverse.  If that seizure had hit 10, 20 minutes later, I could have hit someone with my car.  That is something I can’t imagine trying to carry.  I am fortunate today that my cloud looms above me, and although threatening, it does not crush me or others.  Hurting someone else, even if I had no control, that complication from my epilepsy would crush me.

I am so blessed, and well, lucky, that I am seizure-free, and that epilepsy hasn’t stopped me from going after my dreams, but not everyone with epilepsy is so lucky.  I can take care of myself, some cannot.  I can think, read, write, learn, communicate, and some cannot.  Some have seizures, and some have seizures every day.   Our doctors need a better understanding of this incredibly mysterious disease.  Three million of us in the United States alone have it.  Chances are, you have met someone with epilepsy and just didn’t know it.

I have many blessings, and can give back by telling my story.  It’s tough, but my old family doctor is wrong.  We need to let people know that epilepsy is an awful disease full of fear, moments of helplessness and paranoia, but with medical advances we can conquer epilepsy day by day, and by talking about it, we can conquer the unfair stigma that this disease can carry, day by day, person by person…until the cloud disappears for good.

For more information on epilepsy, here is a good article.

The Worse One

Physical ills are the taxes laid upon this wretched life; some are taxed higher, and some lower, but all pay something.  ~Lord Chesterfield

I’m not a diabetes cop.  I’m not!  I’m a recovering diabetes cop.  Watching my father eat tamales makes me twitch.  I can’t look.  I have to focus on my own food, something else.  Anything else.  Anything to bite my tongue.

My dad appears in my posts quite often.  Poor Dad, I’m always talking about his diabetes.  I don’t remember his diagnosis, but I don’t remember him not having diabetes.  As a child, I didn’t understand his type 2 diabetes.  I knew there were types, I had heard doctors talk about it.  He went into a study when I was a kid to try to better control his blood glucose levels.  He was tired.  Tired from trying, and he wanted to be healthy.  I thought as a kid, whatever type he had, Daddy has to have the worst type ever.  It made him sad, it made him angry, it made him sick, it made his laugh go away.  It made him stomp out of the room in frustration.

My Dad still jokes that all his family left him was diabetes.  He could have prevented his type 2 diagnosis, yes, and if time machines were available, I would go talk to my Dad in his twenties and say, “Listen, I’m from the future.  Creepy how much I look like you, but forget that for now and focus!  Diabetes is awful, and you’re gonna get it!  Do everything you can now!  Find a doctor!  Eat less tortillas and exercise!  Cut out the drinking now, not later!  Go back to the doctor!”  Now having had it for decades, we as a family know that we have to do the best we can.  Dad doesn’t lack for exercise.  He is way more physically active than I am.  He landscapes constantly to this day, spending hours outside doing manual labor.  I remember as a kid, when Dad would have a high blood glucose reading, he would march outside to bring it down.  I’m maniacal with my diet now (another post, possibly), analyzing everything I eat, but Mom didn’t cook like Paula Deen.  We could have been healthier, sure, but everyone is allowed missteps in the form of an unhealthy treat now and then.  My Dad learned over time, what foods were going to spike his blood sugars, and he worked to avoid them.  Never more so than after his heart attack.  Before his heart attack, he had an A+ physical.  Cholesterol – GREAT, lower than mine.  Blood pressure – wonderful!  Boom, heart attack.  Then, he became as crazy as me, afraid to eat anything at first, without reading and re-reading and calling me.

“So, type 1…that is the worse one, right?  Or, er, is it the other way around?”

“Well, actually, they are two different illnesses, that share the same complications *enter elevator speech on autoimmunity*.”

With JDRF, my world became type 1.  I know more people with type 1 (include the care takers, the type 3s in there) than without it.  It boils my blood when people say you can prevent type 1.  It angers me just as much when people say that if only those with type 2 weren’t so lazy…

Dad has a healthy diet, Dad has oral medication, Dad has two blood glucose meters, Dad has insulin, Dad has a team of doctors.  We’ve been working at this together for a long time.  It hasn’t gone away.  Type 2 has a tendency to progress, and when it continued to do so despite our best efforts, Dad went back on insulin, and he’s been crashing in the middle of the night.  Sometimes during the day.  He shares short-term complications with type 1 now, too.  Dad’s insulin producing beta cells are tuckered out, but he still produces insulin.  Not enough, and his body is resistant to it.  It’s erratic, and we weren’t given a schedule to follow for that, so sometimes he’s high and sometimes he’s low.  One thing for certain, I’m consistently worried about him.  Just like anyone with diabetes, anyone who loves someone with diabetes. 

I know people with type 1 who are complication-free, active, healthy and I love hearing about it!  I know people with type 2 – same thing.  Some of these people work hard at managing their diabetes.  Some don’t at all.  So even though, a healthy person with diabetes makes me happy for them, I am still angered by the disease.  Not fair.  Diabetes doesn’t play fair.  Any type.  Everyone has their own, not just their own type, their own diabetes in general. 

I’m a cure crusader, I want type 1 off the planet, goodbye and good riddance!  I also get chills about the research in treatment and complications.  It means a great deal to me as the kid.  I want these things for my Dad, and pray that he will be able to benefit from them.  So he can dance with me at my wedding, and do it pain-free. 

Dad eats about one tamale a year.  The last time I witnessed Dad eating a tamale I also witnessed his blood sugars going through the roof and him feeling truly ill.  Then it’s the inquisition for him.  Did he take his pills?  When?  What else did you eat?  This quiz then moves forward into the second stage of what to do to correct the high.   A sacred culinary tradition, the tamale should be loved for its heritage, its incredible tastiness and its mystical ability to bring people together.  Instead, to me, the tamale = evil starch and fat vessel determined to KILL DADDY.  But Dad still thinks of the tamale in the old way.  So Dad ate his annual tamale at Christmas Eve dinner with the family.  He didn’t spike, not at all.  Why?  Have absolutely no idea.  That’s the world diabetes creates for us.  There is no worse case of diabetes.  Every case is the worse case.  Just because it’s ours.