Monthly Archives: October 2015

Unwelcome Bedfellows

*This is not my bed.

*This is not my bed.

(Today’s blog post is part of a continuing series of personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)

For the last week or so, my TN has crept into bed and layed beside me like a rain-soaked dog.  I say rain-soaked because generally, I’ll share my bed with any dog (and I mean the literal kind).  I once had a rescue dog who had a little gas problem brought on by his fearfulness.  He burped just like a human which amused me more than irritated me.  Digestive problems or no, he was welcome on the bed any time. He deserved it.  But a skunked dog?  Or a wet dog?  Sorry buddy, you’ve got to flop somewhere else.

Although I am in some level of pain all the time, I’ve always considered myself lucky that my TN starts to feel better around eleven pm.  It is atypical for even Atypical TN.  Whether it’s the cumulative effect of the boatload of meds I take each day or perhaps because my nerves get too tired to fire at night, I find a respite in the witching hour.  So I try to stay up to take advantage of the feel good moment, which for me means it’s at about a level five on the pain scale.  Fortunately I have some insomniac friends who keep me company either by text or online.  Last night I had a rather heady text conversation that ranged from conspiracy theories to Da Vinci’s scientific genius to Leopold and Loeb.  At around one-thirty I felt like I might doze off mid-sentence, so I bade my goodnight for the evening.  I now realize that was a gesture of wishful thinking.  It was not a good night.

Interestingly enough, I did nod off and had a memorable dream at about three this morning.  I don’t usually remember my dreams, so the ones that etch in my brain are usually pretty entertaining.  I was in a vehicle with Elvis.  The leather-clad, 1968 Comeback Special Elvis.  Only it was in present day and he wasn’t quite so Elvis-y.  He was updated for the times.  He had jeans on, but still wore his well-tailored leather jacket (because a good leather jacket never goes out of style).  He wss driving.  We were in a snowstorm and Elvis decided he needed a shirt, so we stopped at Sears.  The store was pretty empty due to the weather, but a few women came up to him all gaga requesting his autograph.  He graciously obliged.  I have no idea what our relationship was in the scenario but I was keenly aware that while he was the younger, cooler version of himself, I was pretty much who I am today.  I didn’t really question it much – I just went with it.  I’m not a huge Elvis fan, but I felt special to be hanging out with him.  And it was a dream after all.  

Anyway, so we get to the shirt rack at Sears and Elvis picked one out and then my previous job in marketing sort of kicked in and for some reason I told E that he had to buy a second, different shirt so that we could do an A/B test to decide which one people liked better.  It got all statistical for a moment, then we paid for the two shirts and exited the store.  I wanted to get into “my” car which had mysteriously appeared at Sears.  Only it wasn’t really my car.  It was an orange 1969 Dodge Challenger, or perhaps a Charger, neither of which is my all-time dream car.  Elvis was driving the untethered cab of an 18-wheeler.  “Mine will be faster, “ I said, but Elvis wouldn’t have any of it, so into the truck we climbed.  I remember enjoying the feeling of looking down on the snowy pavement from such a height and feeling safer than I would in a car.  We drove for a while, the headlights capturing the criss-cross pattern of wind-swept flakes on an otherwise dark road.  Then I woke up.

I remember the dream but I also remember the pain.  It was right there with me in my slumber, impacting my actions as it does when I’m awake.  My movements were more conservative and deliberate.  I wasn’t as verbose or animated.  I bent my head down and put my hand up in a vain attempt to shield my cheek from the weather.  And when I woke up, the pain was there on top of me, pinning me in to one corner of the mattress.  I stayed awake for awhile, trying the few little tricks I have to sometimes ease the discomfort.  I gently brushed my teeth with warm water hoping the massage of my gums might trigger my nerves to rest.  I applied gentle pressure with a small pillow.  I squeezed about half a tube of Orajel onto my tongue and worked it around the left side of my mouth until I was drooling.  Nothing worked.  

It has become a pattern now.  I’ll doze of lightly, then awaken, each time hoping the pain was part of an un-recalled dream.  But the pain is there, on me, in me and around me like the smell of a rain-soaked dog.  And Elvis has left the building.

Note:  I wrote this at about 4:15 am.  I tend to be a little over dramatic at that time.

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Counting My Blessings Instead Of Sheep

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(Today’s blog post is part of a continuing series of personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)

Today is October 7th.  Do you have the date circled on your calendar?  Probably not.  Up until recently, I didn’t either.  But today is International Trigeminal Neuralgia Awareness Day.  Oh there won’t be any parades, or mentions on TV, but that’s the reason why awareness is so important.

I was diagnosed with TN about two years ago, although I’ve had the symptoms for seven years or more.  This condition has not only caused me to be in constant pain, it has also robbed me of much more important things than just personal comfort.  I left a position with a company I loved after eighteen years because I was no longer able to perform at what I considered to be of the right caliber. Much as I want to be working, my health is not dependable enough to enable me to get a job. With the loss of my work-a-day life, I also lost much of my social life and a daily connection to people.  The meds I use to help take the edge off the pain have caused weight gain and drowsiness, which is a really bad combo.

So yeah, I have this extremely painful condition, but you know what?  I still consider myself blessed.  Here’s the thing…I’ve lived through much harder events in my life than TN.  And I know many people have it much worse than I.  Living in a large metropolitan area, I was diagnosed fairly quickly by doctors who knew about and already had patients with Trigeminal Neuralgia.  Many people don’t have that experience.  During particularly bad pain flares, even their emergency room medical personnel have never heard of TN.  And my hunch – and I must admit I’m a pretty good huncher – is that there are many more people living with TN than are diagnosed.

I also have a family that “gets it”.  They might not be able to empathize with the pain and I’m certainly happy for that.  But they believe what I am saying about my condition and I’ve never caught anyone giving each other fish eye of doubt.  Yes, I have lost friends because of TN, but I’ve also had people step up in unexpected ways. I’ve also met some great people, albeit virtually, who also live with TN. And at fifty-two, I’ve had a lot of good years where I didn’t have pain.  I can’t imagine being a child or the parent of a child diagnosed with this condition and learning that the vast majority of their best years will be lived under a cloud of pain (and meds).

Trigeminal Neuralgia is a curse which has led me to recognize the simple blessings – the love of my family, the support of a handful of good friends and the appreciation that any day, no matter how humdrum, is a good day when my pain level is low.  We in TN land call ourselves warriors and it’s an apt title.  Every day we must wake to an unknown fate, fight the pain, live with our losses, but we are still here and those good days are glorious.  And if someone reads this who learns about TN from this and other blog posts, well that’s just gravy.  Happy International Trigeminal Neuralgia Day to all.