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(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.

(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.

(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.

(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.)

Yesterday I talked about overthinking and although it’s often a negative thing, thinking too much can also be helpful.  One of my oft uttered phrases is, “I am always seeking perspective,” and  for me that perspective boils down to five simple words:

Things could always be worse.

Now are there days when I think, “this is the worst”?  Yes.  I have bad days, really bad days and a lot of them, but I still know that there are others who have it worse than I.  I think about the fact that this condition affects children and how awful it must be – and how difficult it must be for their parents.  I am grateful that I live in a metropolitan area where many doctors know about TN even though it’s rare. Although my financial situation does worry me, I know I have it better than many people (at least for now).  And I can be selfish with my time.  I don’t work (at least for now), take care of a family or make it through a day of school.  And I have a supportive family who is always there when I need them.

Honestly, I wouldn’t like it if someone said to me, “You know, Sal, things could always be worse,” because compared to a lot of people, my “things” are worse.  But deep down I know that some day things will be worse, whether that’s due to my TN or something else.  In the meantime, I’m just going to count my blessings.

(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 overthinker.  I like to look at situations from all angles to figure how many ways things can go wrong.  It’s a blessing and a curse.  Overthinking may have served me well professionally, but personally, not so much.  I occasionally throw myself into a spiral of obsession about really stupid things like why my black stove is such a pain to keep clean. (But seriously, how do you get rid of the streaks?) And when I was first put on Tegretrol (the first TN drug I tried), my overthinking obsessiveness kicked into high gear.  And then I kicked the Tregetrol.

But here’s something interesting…I never spend a lot of time overthinking my TN.  I’ve never asked “Why did this happen to me?”  I wonder how it happened in terms of a root cause, but never “Why me.”

I know a lot of people view events in their life as “God’s Plan” and I mean no disrespect to anyone who finds comfort in that philosophy (or theology, I suppose).  But I don’t think God had anything to do with it.  It’s not like He’s up there in Heaven holding a giant remote control with channels set for every human.  I doubt He’s thinking, “Let’s see what’s going on with ol’ Sal down there. Maybe we can shake things up a bit.”  Nor do I believe it is in anyway punitive or penance for anything I’ve done.  The God I believe in doesn’t do stuff like that.

I just think, “It is what it is” and deal with it.  And the “why” is far less important to me than the “how did this happen” and “what can I do about it”.  Those are the questions I’d like to answer, although the solutions aren’t so easy to derive. And I’ve decided it’s healthier to let those answers unfold to me rather than trying to think of all the scenarios.

In the meantime, I’m gonna get the Windex and clean my stove.

(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.)

“The Suicide Disease.”  Now there’s a nickname that’ll stop you in your tracks.  It’s one of the alternative names for Trigeminal Neuralgia along with the more fancy sounding Tic Douloureux.  I dislike the name intensely, although I do use it from time to time.  In a world cluttered with brands, jargon, posts and tweets, “The Suicide Disease” gets people’s attention.

When I was first diagnosed and came upon this alias I kind of thought, “Well that’s just great…”  (I’m a pretty low key person.)  But it freaks a lot of people out. Big time.  And the lack of information on TN only adds to the fear because much of the anecdotal data out there is not only incorrect, it’s sensationalistic.  I’ve seen articles that imply that 20% to 40% of people with TN commit suicide within two years.  Not only is that wrong, it’s irresponsible on the part of whoever printed it.

Here’s what I know…do people with TN have a higher rate of suicide than the general population?  Well my take on it is “no”.  First, it’s important to note that suicide statistics for both groups (TNers and Gen Pop) are less than 1%.  Not twenty.  Not forty.  Less than 1%.  BUT, and this is a big but, I don’t believe that a suicide rate for TNers can be what is referred to as “statistically significant”.  Here’s why… when you’re dealing with a population such as that of the entire US (at 300 million), it takes a lot to move the needle in terms of percentages of anything.  But on a much smaller population – and the number of people in the US affected by TN ranges from about 100,000 to 400,000 – there simply aren’t enough people to draw a concrete conclusion that can be compared to the US overall.

In simple math:

If the population is 100 people and 1 person does something unusual, the rate is 1%.

If the population is 10 people and 1 person does something unusual, the rate is 10%.

The same number of people did something unusual in both cases, but the starting quantity makes all the difference.  Plus, you have to account for the people in the TN population who would have done it anyway which makes the number even smaller.  (I’ve not found a statistic that adjusts the TN number by removing who would have done it anyway.)  And since almost all statistical measurements have an error rate (+/- X%) looking at something with a total of less than 1% is pretty much moot.  (All that being said, I’m open to anyone else’s interpretations of the numbers.)

Additionally, it’s important to note that the name was coined decades, maybe even centuries ago when there were fewer treatment options.  That’s as compelling an argument against the comparison as the math.

Do people with TN commit suicide?  Sadly, they do.  Do people without TN commit suicide?  Sadly, they do too.

(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.)

The internet.  The cause of, and solution to, all of life’s problems.  Okay, I stole that line from Homer Simpson, only he was talking about alcohol.  But it’s kind of a valid statement.

Like most people, I’m on Facebook.  But having a chronic pain condition and perusing your FB newsfeed can be a pretty depressing activity.  Everyone is posting about trips and fun events and how far they’ve run today while I’m just happy when I make it to my mailbox.  I now do a lot of scrolling to find cute cat videos and I’m not even much of a cat person.  Okay, the cat in a shark costume riding the Rumba is a classic, but a lot of them are just cats being cats.  But it’s better than focusing on all the fun I’m not having.

Then I stumbled upon the Facebook groups for people like me.  People with TN.  The TN Family and TN Support Group in particular.   They have been a Godsend because once I was diagnosed, I “came out”to my family about my condition after living with it in silence for many years and my family has been great.  My friends, however are something of a mixed bag – some have really stepped up in ways I never expected, while others sort of drifted away.  (And honestly, I’m not so great at keeping in touch either.)  But nobody – no matter how sympathetic – really understands all the challenges TN creates.  It’s not just the chronic pain.  It’s the lifestyle changes, the roulette wheel of drugs, the fatigue, the boredom.

Finding people “like me” has been crucial to how I live with this condition.  We “get it” and relate to each other’s pain like no one else can.  We understand the frustration of well-meaning people who give us suggestions that run the gamut from unrealistic to downright patronizing.  We share our concerns, frustrations and sob stories and always jump to each other’s aid with kind words and wisdom because we have been there.  And if you haven’t been there, ain’t no way to pretend you have.

So today I say thank you to my TN Family.  It may not be a family that anyone wants to join, but I can honestly say I wouldn’t know what to do without you.

(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.)

When you have TN, life’s a beach – in the metaphorical sense.  I’m not a big fan of large bodies of water (for no particular reason).  So to me, TN is sort of like the ocean – something that frightens me and which is to be avoided.  The shore is my regular life.  Dry and nonthreatening.  Since first experiencing pain about six years ago, I was able to draw a line in the sand over which I would never cross. The problem is, the waves of TN would roll in closer and soon, that line was swept away.

When it all started, my pain was sporadic.  I’d have a few crummy days, then all would be well for a while.  I could deal with it without any interference to my work or life.  Then the painful periods became more frequent, and although I hated to do so, I had to start taking time off from work.

Woosh.  The first big wave just hit.

Then my pain became constant.  I couldn’t perform at my job well so with the generous assistance of my company, I took a leave of absence to figure out what was going on.

Woosh.  There’s another wave.

Eventually, since my pain was only increasing, I had to leave my job.

Woosh.

Once I became unemployed, I set certain expectations for my self.

I will write every day.  Woosh.  Gone.

I will get up and take a shower first thing every morning.  Woosh.  Bye bye.

I will do something social at least once a week.  Woosh.  Where’s the remote?

Every time I tried to reset that line in the sand, I was backing into the seawall because the tides of TN were coming in higher and higher.

So basically, I’ve ended up with one hard and fast line:  No matter how crappy I feel, I will never get back into bed during the day.  Ever.

So far I’m holding my own on the good side of that line.  But I’ve got to admit, the bed is looking awfully nice and dry to me these days.