Monthly Archives: April 2015

Perspective

A to Z Letter P

(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.

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Overthinking

A to Z Letter 0

(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.

Nickname Shmickname

A to Z Letter N (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.

Misery Loves (Virtual) Company

A to Z Letter M

(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.

Lines In The Sand

A to Z Letter L

(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.

Know You’re Right (Not Your Rights – You Can Google That)

A to Z Letter K

(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.)

Just to be clear…nothing I am posting here has anything to do with the Patient Bill of Rights.  I suppose I could research that, but I already have 10 tabs open in Chrome.  When I say, “Know You’re Right” I’m referencing you, as the keeper of your castle.

When I was employed, I often had to make presentations to the big mucky-mucks at my company (I was a medium-sized mucky-muck).  Or meet with people whose knowledge of things like Finance and IT far outpaced my own.  I developed some skills (and learned some from mentors) that I think served me well when I later had to meet with doctors about my TN, especially Neurologists.  So here’s a few unsolicited (but hopefully useful) recommendations.

First and foremost, you are your own best advocate.  Take control of the appointment from the start.  Remember, doctors aren’t doing you a favor by seeing you – it is their job for which they are paid.  Handsomely, I suspect.

Declare your expectations.  Whether you’re a first-timer or a “regular”, tell your doctor up front your goals for the appointment.  Do you want to get a confirmed diagnosis of TN?  Do you want to discuss alternative treatment options?  Whatever it is, set the tone.  Say something like, “I was referred to you by Dr. So-and-So who suspects I have TN.  I’d like your opinion of this diagnosis or to understand the steps I need to take to confirm it.”  Or, “My current meds don’t seem to be working.  I want to discuss options for alternatives or more aggressive treatment.”

Make lists in advance.  Don’t be intimidated to ask questions – and lots of them – during your appointment.  Bring a list.  And tell your doctor up front that you have a list.  Make sure he/she knows that you don’t plan on leaving the exam room until all your questions are answered.  Don’t be a jerk or anything, just wave your list around a little and say something like, “I have a whole bunch of questions to ask you.”  Also, in the days/weeks leading up to your appointment, make a list of your symptoms and possible triggers.  When does your pain hit, how does it feel, etc.  We tend to think we’ll remember everything once we get into the exam room.  We don’t.

If possible, bring a buddy.  Doctor’s appointments can be daunting – especially for a diagnosis like TN.  If possible, bring someone along with you for a second set of ears.

Bring test results.  Usually people end up at a Neurologist office after traveling down a meandering path from their Family Physician to their Dentist to an ENT.  If you’ve had any tests taken, like a sinus CAT scan, bring the results. Help your doctor to rule out other conditions that could be causing your pain.

Wine before liquor never sicker.  One thing your new doctor might do is get you started on medication.  They all have side effects, so there’s no way around that, but some can be impacted by other meds you’re taking.  Write down everything – including OTC and supplements – with their dosages and bring it with you.  Make sure your doctor reviews these once he suggests a prescription.

Repeat after him/her.  Chances are you didn’t go to medical school.  You shouldn’t be expected to know doctor stuff.  And some doctors are too smart for your own good.  If he/she says something that you don’t understand, repeat what they’ve said to you in normal person language.  Listen to what they tell you, and if confused, say something like, “Let me repeat this back to you, so I’m sure I understand.”  Then restate what you’ve heard in your own words.  Non-doctor words.  Third grader words.

Do your reseach part 1 – Our first inclination when we hear we might have TN is to jump on the internet.  Do so thoughtfully.  Stick to sites like WebMD, the Mayo Clinic and and the Facial Pain Association.  News reports tend to go for the extremes.  Everyone is different.  Don’t buy into the hype or jump to conclusions.

Do your research part 2  – Doing some research before your appointment may help you come up with better questions to ask.  But my suspicion is that some doctors are a bit suspect of someone coming in with a self-diagnosis.  Try to refrain saying things like, “but the internet says…”

It’s not an appointment, it’s a date.  And you’re not going to just marry anyone.  If you don’t like your doctor – if he/her seems rushed, doesn’t make eye contact, doesn’t mesh with you personally – go to someone else.  Granted, getting an appointment with a Neuro is harder than getting an audience with the Pope, but you should feel comfortable and confident leaving their office.  If not, break up with him/her.

Be nice.  Okay, that’s not just my recommendation for doctor’s appointments, it’s my recommendation for life.  Being nice, maybe a little friendly even, goes along way.

Judging By The Scale

A to Z Letter J

(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 no longer weigh myself.  I think my scale is buried underneath two boxes of emergency Count Chocula in my pantry.  (Don’t judge.  They only sell it once a year now.)  All I know is that I’m down to three pairs of pants that fit.  And really?  That’s more information than I need at this point.

I do base my days on a different scale.  One that all chronic pain sufferers find all too familiar – the pain scale.  You probably know what it is.  It’s hanging in many doctor’s offices and on the walls of emergency rooms.  It features a happy face that goes from Mr. Delirious (0) to Mr. Depressed (10).

For me, a good day is around a five on the scale – slightly bothersome but not so much to distract me from activities.  An phenomenal day is a four.  I haven’t had anything lower than that in months.  But I have been at the upper end of the scale quite frequently.  I have at least two days a week when my pain settles at seven and a couple that are an eight or nine.  I’ve never had a pain scale ten day, because I get the sense my pain could actually go higher, so I want to have a way to rate it.

But therein lies the rub with the ol’ pain scale.  It’s completely subjective and because of that, I think the tendency of the medical community is to assume people overestimate their pain.  And honestly, how can someone dispute that philosophy?   I’d like to think that I’m a good little soldier, that I have a higher-than-average pain threshold, but I don’t really know.  What if I’m really a wimp?  What if I have the tolerance of a superhero?  That would be kind of awesome.  I could get a cool catsuit in leather or latex.  No…wait…that would just serve to validate why I only have three pairs of pants that still fit.  I guess I’ll just have to be content with where I am right now – like Mr. Indifferent Face (5) on the pain scale.

It’s All In Your Head

Metal letter

(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.)

True or False:  Trigeminal Neuralgia is all in your head.

Did you say True?  Right!

Did you say False?  Also Right!

Okay, it was a trick question.  It’s all in the interpretation.  Anatomically speaking, TN is all in your head.  I kind of think of it like this…imagine your head is the penthouse of the skyscraper you call “me”.  There is an electrical outlet toward the back of your head.  It’s the only outlet in the room and you have a lot of stuff to plug in.  So you hook up one of those orange industrial extension cords.  Then you plug in a bunch more little extension cords in varying lengths to reach your lamps, computer, TV, stereo etc.  Well when you have Trigeminal Neuralgia, one or several of those cords gets shorted out and goes haywire, spewing out random pulses of electricity that makes the lights flicker and fries your hard drive.  Medications are sort of the surge protector meant to keep the current of electricity running normally, but they don’t really work.  So yeah, Trigeminal Neuralgia is all in your head.

Then again, it isn’t.  It is not uncommon for people who have TN to be treated as if theirs is a psychosomatic condition.  Sadly, I have even heard stories of medical professionals who have this viewpoint.  I’m lucky.  I have a supportive family who never questions my disorder as not being legitimate or used as an excuse to bail on responsibilities.  But like I said, I’m lucky.  I know there are people whose family or friends look upon TN with suspicion – something you can just “think away”.  They view it as a “nervous condition” as opposed to a condition of the nerves – and that’s a big difference.

I’m a pretty open minded person and also somewhat pragmatic.  I view things from all angles.  So, I’ve asked all my doctors the same question.  “Is there really something physically wrong with me or am I crazy?”  I think my Neurologist put it best.  “The mind can do many miraculous things – both good and bad – but it can’t make your face swell.”  Case closed.

So is Trigeminal Neuralgia all in my head?  Yes, yes it is.

And is Trigeminal Neuralgia all in my head?  No, not it’s not.

Hello! My Name Is ____________

A to Z Letter H

(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.)

Major events – even good ones – change us.  Each one is like getting a new haircut. The person that walks in is different than who they are walking out.  Sometimes the change is for the better and sometimes you go in asking for a little trim and walk out with a crew cut (that actually did happen to me once).

That’s been one of the biggest challenges with having TN.  I don’t want the condition to define me, but it’s obvious that I’m not the same person I was before the diagnosis.  First there’s the obvious physical stuff – the weight gain, the loss of energy and of course, the searing pain that runs across my cheek every moment of every day.

In some ways, the physical changes are easier to accept.  But the immeasurable changes to my identity, my sense of self, are much more challenging.  I used to be sharp, quick on the uptake, and now I feel like I am perpetually walking around with a “Huh?” expression on my face.   The first drug I was put on threw me into an OCD spiral with some impulse control overtones.  I can remember dancing in the aisles of the grocery store with my mom when I was 3, but conversations from last week escape me.  If someone asks, “Hey, whatcha been up to?”  I scramble to find anything to say, no matter how minuscule.  I used to work at a Fortune 100 company for gosh sake, and now I feel an unwarranted sense of accomplishment if I take a shower and vacuum the floor on the same day.  Truth is, I’m not Trigeminal Neuralgia.  I’m just  not sure who I really am at this point.

Guilt – The Only Trip I’ve Taken Lately

A to Z Letter G

(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.)

Ah, guilt.  I’m so riddled with it I feel guilty for feeling guilty.  The rational side of me knows that sometimes I can’t make it to a family function or get to the grocery store.  But the other side of me, the side that’s worked since I was thirteen, that never missed a family event, that got stuff done is constantly whispering “not good enough” in my ear.  And then there’s the side (yes, that’s 3 sides – I’m a triangle) that knows I’m doing the best I can.

People with TN, or any chronic pain I imagine, are constantly in a tug-of-war between what we know we’re supposed to be doing and what we’re actually getting done.  I’m a worker bee, so not working has been really hard for me.  Yet I know if I was working, I’d be doing a lousy job.  It’s kind of a lose-lose situation. If someone says, “It would be great to see you this Sunday” my brain scrambles it and I hear, “You’ll really let me down if I don’t see you on Sunday”. (And honestly, sometimes I know that’s the truth.)

I can usually brush off the guilt fed by my perception that I’m not living up to someone else’s expectations.  I know that the people in my life have great capacities for forgiveness, even If I do disappoint them.  And, heck, I live alone, so nobody knows when I don’t take a shower or if I nap for four hours on any given day.  But I know.  The problem is, I can’t forgive myself.