Monthly Archives: April 2015

Zeligate Delegates – An Homage

Letter Z Tattoo

(Today’s blog post is part of the Blogging From A to Z Challenge during which writers all over the world blog each day in April based on a corresponding letter of the alphabet.  These are my personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)

Okay, “zeligate” isn’t actually a word, but “zelig” is and I didn’t want to close out the Blogging from A to Z Challenge on one of the obvious choices (e.g. zero, zany, etc.)

A delegate is defined as someone authorized to represent a group of people, and while I wasn’t exactly granted any kind of permission, I’ve used this month to talk about my life with Trigeminal Neuralgia.  I hope I have done so in a way that is respectful and relevant to all the TNers out there and I truly appreciate the positive feedback I’ve received.  Of course, I also hope that some people who have read my blog have not been familiar with TN, because one of our greatest fights is for more awareness.

A zelig is a person who is able to change their appearance, behavior, or attitudes, so as to be comfortable in any situation.  I contend that everyone with TN or any chronic illness, has a bit of zelig in them.  Most of us face every day by attempting to be as “normal” as possible.  We take our showers, put on makeup (okay, maybe not men, but then again…) and go out and face the day.  We cook, clean, spend time with our families and go to work.  Yet in some ways, we are playacting at being well.  We try not to let our condition, and the pain, take over who we are, when many of us would prefer just to be curled up in bed, not talking, not having to be anything.  We trudge from doctor to doctor, each time feeling hopeful that this will be the one who relieves us of the pain.

I have had the opportunity to meet people who have TN and even though we share a medical condition, I still look upon them with awe.  I am so thankful to have found people that really get it.  People with whom I do not need to change or fake it or pretend to feel better than I do.   Each of you are rock stars, inspirations, keepers of our fears, all while still being able to laugh at times about things like brain fog and weight gain (maybe not so much about the weight gain).  If I could share my spoons* with you, I’d do it in a heartbeat – and they wouldn’t be dinky teaspoons, either.  They’d be those ginormous decorative spoons people hung on the wall in their kitchens in the 70’s.

And I’ve had an additional dosage of “zelig” this month.  I pretended to be a daily blog writer.  It’s been a fun experience, but my life isn’t exciting enough for a daily update.  Oh, I’ll continue posting, just not so often and not about TN.  I’m sick of this disease – no pun intended.   (And if you want to receive email notifications when I post something you can sign up for it.  It’s over there – on the right side.)

Thank you for reading.

*Why spoons?  Learn about “The Spoon Theory” here:

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

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Youth And Consequences

A to Z Letter Y

(Today’s blog post is part of the Blogging From A to Z Challenge during which writers all over the world blog each day in April based on a corresponding letter of the alphabet.  These are my personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)

Looking back at my life, I never would have thought I’d be stricken with a chronic pain condition.  Heart disease?  Yeah.  Cancer?  Very likely.  And I still may not be out of the woods yet where those two illnesses are concerned.  You might consider that attitude to be morbid, but it really isn’t.  It’s realistic and keeps me vigilant as far as my health is concerned.

However, now that I have TN, there are some things I wish I had done when I was younger.  This is due both to the limitations of TN and also the fact that who I was and what I did had such an impact on the rest of my life.  So this isn’t a bucket list, but rather a mulligan list of things I would do if I could get a few do-overs in my life.  I don’t want this post to sound all narcissist, but perhaps someone reading, someone younger, will find some inspiration.

Don’t work so hard – or so young:  I started working when I was thirteen and never even took a summer off, or any time period over two weeks.  The upside was that I developed a very strong work ethic.  The downside is that I never learned how to slack off, and now that my life is basically all about slacking off, the transition has been challenging.

Travel outside my comfort zone:  And by this I mean, physically travel to more places but also take more chances with my life and my career.  I was into some crazy stuff in my twenties, but I always had this rigid sense of responsibility.  I took the safe route a lot.  I wish I had just said, “fuck it” more often and backpacked through Europe of something.  As much as I still want to do those types of things (although backpacking would be replaced with nice hotels), my TN kind of puts a damper on those plans.

Had a few more wacky haircuts:  I had a few.  The pink crew cut was pretty out there, and I shaved one side of my head long before Miley Cyrus or whoever has made it popular recently.  I should have gone to an extreme a little more often, because I’m dying to now (no pun intended) but I think it wouldn’t be age inappropriate.  (Granted, most people probably can’t relate to this one.)

Taken more pictures:  There were no selfies in my day.  There were not cell phones in my day.  But we did have cameras, like my trusty little Kodak 110 Instamatic, which wasn’t instant at all, but required that the film be developed at Walgreen’s.  Half the pictures were probably left undeveloped in a drawer somewhere at my parent’s house.  But I wish I’d taken more pictures – not just of places I’ve been, but of the people who were with me.

Be who I am now back then:  I am so much more confident than I was ten or twenty years ago.  I wish I’d had the same attitude and opinion of myself back then.  I wonder what my life would be like if I had been more assertive and stopped playing it so safe.

And finally…

Uhhhh?  Crap: I’m sure I had some really profound last point to make, but being a TNer, the fog has rolled in and I totally forgot it.  I hate it when that happens.  So I guess I’ll end by saying have more fun, be a little selfish and a little selfless, and never get someone’s name tattooed on you (unless it is your Mom’s).

Xanadus And Don’ts

A to Z Letter X

(Today’s blog post is part of the Blogging From A to Z Challenge during which writers all over the world blog each day in April based on a corresponding letter of the alphabet.  These are my personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)

Drama.  That word is getting overused a lot lately and it isn’t in reference to Arthur Miller.  Instead it is something people say with scorn.  “She’s got so much drama” or “I don’t need that drama in my life.”  But here’s the thing…life without drama wouldn’t be much of a life at all.  Sure we could all walk around glassy eyed and blunted like Stepford Wives, but would anyone really want that?  The reality is we can’t know success without sensing failure.  We can’t experience joy without understanding sorrow.  And we can’t feel passion without experiencing apathy.

Sure, we could live our lives in some idyllic wonder world – a Xanadu if you will – but we could never truly appreciate it if we haven’t, at some point, faced hardship.  Most of us will experience love and loss, good fortune and hard times, health and illness.  It is that spectrum of the human condition that makes us have emotions to begin with.  Granted, there are some people for whom every bump in the road is a cataclysmic event and that can be draining.  But most people – at least those I know – persevere through even the most difficult moments.  And those of us who have TN have our own unique mountains to climb.  But we do it.   And in some ways having those bad days makes the good ones seem ever so much more precious.  I supposed that’s the silver lining to the Trigeminal Neuralgia cloud (and I know it’s a bit of a reach).

I tend to use salty language at times.  And while “life” is on the list of four-letter words, “drama” isn’t one of them.

Where’d That Come From?

Letter W

(Today’s blog post is part of the Blogging From A to Z Challenge during which writers all over the world blog each day in April based on a corresponding letter of the alphabet.  These are my personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)

Today’s post isn’t quite about TN, but more my experience with aging.

I don’t think about my age often.  I don’t imagine many people do.  It’s not like we walk around with a track playing in our heads that says, “I’m forty, I’m forty, I’m forty, I’m forty…”  Sometimes I’ll see a news report pertaining to health, “Women over forty, blah blah blah…” and I think, Man, those poor women over forty.  Then a second later it hits me.  I AM a woman over forty.  And actually, forty is pretty far back in my rear view mirror.  Well, Fuckin’ A.

But in reality, the older I get, the more I realize that I don’t really feel different from a mental standpoint.  I still like my music loud and my car fast.  My personal style hasn’t really changed.  With the exception of ditching the mini skirts, I have no qualms about wearing my black leather jacket, skinny jeans and skull t-shirts.  It’s me.  It’s who I am.  And I think I’m honest enough with myself to notice that I look like a complete idiot.

But a strange thing did happen after I turned forty – literally the next day after I turned forty.  I was getting ready for work, and stood at my bathroom mirror.  I swear there was something – I don’t remember what – maybe a dark spot or a grey hair or a wrinkle, that wasn’t there the day before.  What the fuck is that? and where the heck did it come from? I thought.  And for the next year or so, things like that just started popping up.  A freckle here, a new wrinkle, even the slightest beginning of a turkey neck.  There was a lot of swearing at the mirror in those days.

Then I entered what I refer to as my renaissance period.  I’m gonna say it hit when I was about forty-three.  I grew more confident and more comfortable in my own skin.   I know I’m not a “10”.  I’d say I’m a solid “6” or maybe a “7” on a really good day, and that’s okay.  I no longer obsessed about what people thought of me and focused more on what I thought of me.  I’ve always been kind of a fixer.  I tried to make the people around me happy which is an impossible task, unless they are just as invested in their own happiness.  I realized that I couldn’t fix everyone.   That’s not to say that I became selfish, I just stopped being so selfless.

It was around this time that my TN emerged for the first time.  It would come and go so and didn’t became a major issue until a few years later.  In the meantime, when I was maybe forty-six, I started going through “the change” as my mother would say (usually in hushed tones).   I remember as a child when my gram was going through “the change”, the adults in the family spoke of it as if it was like “Invasion of the Body Snatchers” where her body stayed the same but her mind was somehow altered. I tried to figure out what Gram had “changed” into, but she seemed pretty much like the same person to me.  Yet there was a fear instilled in me from the experience.  The knowledge that I, as a female, would somehow “change” too, and when I did it would transform into an entirely different “me”.  Or so I thought.

My mom didn’t discuss it when it happened to her, and she passed away when I was forty, so when it came my turn, I just winged it.  Actually, I embraced it. What other option is there?  Yeah, I got the hot flashes and gained weight, but on the plus side, I don’t need to shave my legs as often and don’t have to deal with PMS. But I never lost my sanity, so overall, it was kind of a benefit and not a burden.

Then, as many of you know, my TN hit with a vengeance, eliciting a whole new round of Where’d that come from? questions that still haven’t been answered to this day.

In June I will turn fifty-one.  Do I like the number?  Not when I really think about it.  So I suppose the best thing to do is not think about it.  I’ll leave that up to the poor women over forty to worry about.

I’ve decided I’m going to live my life by the philosophy of my father.  “I’m not growing older.  I’m just living longer.”

Vying For Attention

A to Z Letter V

(Today’s blog post is part of the Blogging From A to Z Challenge during which writers all over the world blog each day in April based on a corresponding letter of the alphabet.  These are my personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)

This conversation has actually happened.  More than once.  I will use the abbreviation F which could stand for “family” or “friend”.

F:  “I’ve heard you’ve been sick.  How are you feeling?”

Me:  “Well, I’m not exactly sick.  I have a condition called Trigeminal Neuralgia”

F: “Tralalala…what?”

Me:  “Trigeminal Neuralgia.  It’s a progressive chronic pain condition affecting the trigeminal nerve system that sort of snakes its way around my head.”

F:  [blank stare]

Me:  “My face hurts.”

F:  “Ooooh!  Do you want a Tylenol?”

I don’t recount that common conversation with hostility.  No one has heard of this condition, so I really don’t expect not to have to explain myself.  But therein lies one of the biggest challenges of having TN:  no one has any idea what I’m talking about (unless they have it, also).

Having any chronic illness is difficult.  Having one that nobody has heard of adds a whole different level of complexity.  First there is the whole diagnostic process.  Some people just don’t have access to doctors who have even heard of this condition.  And for some of us, it is more a diagnosis of exclusion than an easily-verified disease.  Next, the “wheel of pharmaceuticals” we all spin.  There are no dedicated medications for TN and even those that work are often not eligible for insurance because they are prescribed “off label”.  Each of us go through an often lengthy process to find drugs that provide some relief.  And good luck getting disability.  Little data has been gathered on people with TN so some sufferers are received with skepticism by their doctors. There are several surgical procedures, but no definitive cure.  Heck, we don’t even have our own dedicated ribbon color – TN shares theirs with other conditions (it’s teal btw).

I’m pragmatic.  I don’t think funds should be diverted from say, breast cancer or brain cancer research, to studying TN.  In reality, our small numbers make that impractical.  Add that to the fact that TN is not a fatal condition.  Yet at the same time, it is frustrating that the “most painful diagnosis known to man” doesn’t get a little more attention by the medical community.  You’d think some med student or doctor would find some personal challenge in identifying a cure.

We need a spokesperson.  Someone famous.  Someone famous who is universally liked because they are a good person.  No…wait…I wouldn’t wish TN on aa person like that.  I wouldn’t wish TN on anyone.

(Note:  I realize there may be some redundancy between this and past posts.  It may be because I’m running out of things to say, or because my meds have fried my short-term memory.  Or a little of both.

Unchained Malady

A to Z Letter U2

(Today’s blog post is part of the Blogging From A to Z Challenge during which writers all over the world blog each day in April based on a corresponding letter of the alphabet.  These are my personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)

You know what I hate most about TN?  Okay, that’s not a good question because I hate everything about it.  But one thing in particular drives me crazy – the randomness of it all – and I’m someone who loves random.  A philosophical conversation while in the checkout line at the grocery store?  You just made my day.  Seeing someone in short shorts and flip-flips on a cold Chicago winter day? Where’s my camera.  You get the drift.

But TN, as insidious as it is, is just way too unpredictable.  You just can’t count on its behavior.  Days that should be relatively good are terrible.  Days when you gear up for the worst-of-the-worst aren’t too bad.  It’s sneaky that way, which make having it even more difficult.  There’s no way to prepare.

I keep a pain diary (I have a lot of free time on my hands).  I write how I feel morning, noon and night, what the weather is like, what and when I took my meds, what I did during the day, stuff like that.  I already know that wind and stress cause my pain to increase, but beyond that, there are no trends, no glaring neon sign that reads, “This is what makes you worse.”

Sometimes when I have a particularly good day, I use that as a model by which all future days are structured.  I now eat oatmeal every morning because that’s what I ate on a good day about three months ago.  I started taking my meds at eight-thirty instead of eight o’clock because that seemed to help one month ago.  I stopped drinking pop, and take a shower at night instead of morning because at some point it’s what I did on a low-pain day.

It’s an exercise in futility, but I still keep doing it.  I just wish that at some point I have a good day when I clean my house or do laundry.  At least that would be helpful.

Taking The Corners

A to Z Letter T

(Today’s blog post is part of the Blogging From A to Z Challenge during which writers all over the world blog each day in April based on a corresponding letter of the alphabet.  These are my personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)

I’m an analogy person.  I’m also a car person.  I love to drive – preferably very fast.  One morning, I woke up with this phrase on my mind:

All corners and no curves.

I sat on the edge of my bed and thought about it.  Then it dawned on me that this is how my life has been, especially the past ten years or so.

When you’re driving, the best kind of road is one that has straightaways combined with some curves here and there.  It makes the drive more exciting, but still allows you to keep your speed up as you head to your destination.  Sure, you might cover the brake just in case the curve is tighter than you thought, but you’re still able to move forward with momentum.

My life these days seems to be lacking in gentle curves but is awash with corners.  And corners are a completely different thing than curves.  They require you to slow down to a stop, take the turn, then speed back up again.  They are too abrupt and often you end up going in a totally different direction.  An argument with a friend?  Curve.  Minor car accident?  Curve.  Making a new friend?  Curve.  Fired from a job?  Corner.  End of a relationship?  Corner – or maybe a curve depending on the relationship, I suppose.  Then there are the moments in life when you hit a dead-end.  You can do a three-point turn and follow the pavement back again, but your trip is irrevocably changed because you realize that you can’t really return the same way yet you don’t quite know how to find the right road to move forward.  The loss of a loved is is like that.  And so is TN.

When my sister died, I looked at life in a different way.  Things that seemed important no longer really mattered.  I tried to focus on blessings I hadn’t even considered.  I looked at myself and realized I wasn’t living a life that was authentic to who I really am.  But mostly, there was one less traveler on the road ahead to help guide my way.  And honestly?  To some extent, I’m still a little lost.

With TN, I came upon the dead end and haven’t quite turned myself around yet.  Oh, I keep the car running and am trying to map out a new route, but so far my GPS has failed me.

Will I ever go back the way I came?  Probably not.  But my hope is that I find me a new road, one where I can manage the potholes while still appreciating the scenery.  One with more curves than corners, at least for a while.  I’ve maneuvered enough of those already.

Solitary Refinement

A to Z Letter S

(Today’s blog post is part of the Blogging From A to Z Challenge during which writers all over the world blog each day in April based on a corresponding letter of the alphabet.  These are my personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)

Question:  What’s the difference between living with TN and being in solitary confinement?

Answer:  TNers have better food and softer mattresses.

Oh, and most of us aren’t psychopathic criminals.

I tend to stay up late.  Unlike a lot of people with TN, I actually feel better around midnight, so I’m routinely up until around two o’clock.  One night I was noodling on the computer and flipping through the TV channels when I landed upon one of those reality shows about prison.  It might have been “Locked Up” or “The Women Of XY Prison.”  Something like that.

The show was describing the life of people who are in solitary confinement.  How they have little outside contact, only get to exercise for a brief amount of time per day, eat a crappy diet, etc.

Wow.  That would suck,” I said to myself (although I didn’t really feel sorry too for them).  That’s partly because I got the theme song for the old TV show, “Baretta”, sung by Mr. Sammy Davis, Jr. stuck in my head.  “Don’t do the crime if you can’t do the time…”

Then it dawned on me…their lives are a lot exactly like mine.   Sure, I can use the phone whenever I want and I don’t get my bedroom tossed by someone looking for a shiv.  But it is solitary.  And since I think I have a pretty nice home, it is refinement as opposed to confinement.  I’m not constrained by anything but my TN – but that’s quite substantial.  I suppose it’s a good thing that I’ve always been a loner to some extent because if I was a “pack animal” I’d be going insane.  Maybe I will commit a crime.  Something classy though, like a jewel thief.  Prison may look a bit “rustic” for my taste but at least I could talk to the guards.  And jumpsuits are in right now.

Remission

A to Z Letter R

(Today’s blog post is part of the Blogging From A to Z Challenge during which writers all over the world blog each day in April based on a corresponding letter of the alphabet.  These are my personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)

“Re-mi-sion.”  For some reason every time I hear that word, I hear it as being sung like the credits for “The Simpsons”.  Odder still is that when I hear “Trigeminal Neuralgia” I often hear it as being voiced by Peter Griffin of “Family Guy”.   Clearly I need to up the sophistication level of my TV viewing.

But enough about my quirks.  Remission.  Something that is unattainable for some, but desired by all who have TN.  The truth is, absolute cures are few and far between, but remission is a possibility.  Sometime it lasts for a short period of time and sometimes it lasts for months or even years.  The longest I’ve gone without any pain is probably about six months.  My current “flare” is going on a year and a half.  Eighteen months with non-stop, eye wincing, life altering pain.

But there is  hope.  There’s a woman who went into remission after having an eight-year flare.  Now that’s someone who earned her remission.  And although I am kind of a cynical person, I believe it can happen to me.  I’m not sure how, but it can – no it will – happen for me.

The only thing is…I’m not sure if I’ll know when I’m in remission.  I do have a good day here and there, but I’m gonna have to have a solid chunk of goodness before I start doing the happy dance.  Plus there will always be the lingering shadow knowing that TN, insidious as it is, will always rear it’s painful face again. And in a weird way, I’ve come to know myself as a person living with TN, so it will be hard to get accustomed to the “renewed and improved me”.

Don’t get me wrong, I can’t wait for the day when I look out my window and the sky looks kind of cartoony with big, puffy, child-like clouds.  And then I’ll hear it…the choir of angels and/or cartoon people singing, “Re-mi-sion”.

And when the remission ends, I will utter the one word that seems most appropriate, “D’oh!”

Que Sera, Sera

A to Z Letter Q

(Today’s blog post is part of the Blogging From A to Z Challenge during which writers all over the world blog each day in April based on a corresponding letter of the alphabet.  These are my personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)

Whatever will be, will be.

It’s an old Doris Day song.  The beginning lines are, “When I was just a little girl, I asked my mother what will I be?  Will I be pretty?  Will I be rich?  Here’s what she said to me….Que Sera, Sear…Whatever will be, will be…”

There wasn’t a line that said, “Will I be pretty?  Will I be rich? Will I have the most painful diagnosis known to man?…”

If my post on “Otherthinking” focused on the past and my post on “Perspective” focused on the present, “Que sera, sera (whatever will be, will be),” is how I think about my future.  Granted, I don’t spin around my house in a crinoline skirt and heels singing it like Doris Day, but it’s a coping philosophy I use.  It isn’t that I’m not aggressive in how I treat my TN, I just don’t really think too far in the future.

Here’s the deal…I’m fifty, single, have the most painful medical condition known to man and rarely leave my house.  Why pile on the angst of thinking about where I’ll be a month, year or decade from now?   Do I always succeed in living by the “Que sera, sera” credo?  Hell no.  I’m human after all.  But humans have the ability of compartmentalizing our thoughts.  I think of our brains as a file cabinet.  Some drawers are rifled through daily, like the recipe drawer or the laundry drawer.  Others are full of important knowledge that is only required occasionally.  The tax drawer.  The distant family “what is their name” drawer.

And once in a while, I goof up and open a drawer by mistake.   That’s when the future drawer gets opened.  I may try to close it before I glimpse what’s inside, but I usually spot something that sticks in my mind.  It might be about money or being alone or my condition getting worse, but I quickly slam that drawer and focus on what I’m doing now.   And after I slam that drawer, I make sure to dust off the label to limit the chance of opening it again.  Doris Day would have used a ridiculously fluffy feather duster.   She’d also be dressed in a stylish housecoat wearing feathered mules.  And again that’s where we differ.  I  wear pajamas and use a Swiffer.