Monthly Archives: June 2015

(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.)

I’ve got a wedding hangover.  No, it’s not the good kind you get after a fun night of celebrating someone’s nuptuals, drinking too much and dancing to “It’s Raining Men” or “Love Shack” with your shoes off (I’m dating myself).  It’s the kind we TNers have when we once again have to bow out of a fun activity.  The wedding yesterday was that of my cousin’s son and I haven’t seen my cousins in ages.  I was really looking forward to it.  I had my fancy dress ready, found a good “party purse” (you know, not too big, not too small).  I even had a victorious moment when I saw that my feet hadn’t gained any weight and could still fit into my shoes.

But when you have TN you learn how quickly things can change.  I felt pretty good in the morning, but had already decided going to both the church and the reception might be too much of a risk. So my plan was to only go to the reception (of course I chose the part that offered food).  Well, around 1:00 I started to feel it.  I was at about pain scale 5, which for me is my best case status, when the poking sensation started.  Only it wasn’t like something was poking in from the outside, but rather poking out from the inside, sort of like that scene in the movie “Alien” when the monster baby pops out of Sigourney Weaver’s stomach.  Only I had no monster baby (and I totally would have taken pictures if I did).  The Trigeminal Nerve was making its presence known.  I took my second round of meds and a bonus Vicodin with fingers crossed but before long I had the familiar yet unwelcome feeling like there was a balloon in my cheek.  A balloon which was being filled with water, putting pressure on my eyes, nose, teeth, heck everything on the left side (except my forehead – my forehead always behaves).  That was followed by my newest symptom – the feeling as if there is a flame being held up to the outer corner of my eye, not so close as to scald but definitely enough to singe my skin.

“Well,” I thought once I realized the wedding was a no-go, “At least it happened before I took a shower.”  I mean, why waste a perfectly good shower to lay on the sofa for yet another evening?

It’s s vicious circle when someone with TN has to cancel out on something important, and this wedding was something important.  If it was a casual get-together, I wouldn’t be so bummed about it, but this was special.  After my mom passed away, my sisters and I kind of drifted away from her side of the family and spent holidays and whatnot with my dad.  But I miss them.  Plus it was probably a fun wedding.   Then the more I thought about not going, the more stressed I got, which increased the pain, which made me more stressed.   And so it goes.  It isn’t really a shame spiral – I can’t help that I have this condition.  I guess it’s a disappointment spiral. And yeah, a guilt spiral. I hate making commitments and backing out.

I don’t know if everyone feels this way, but I was actually kind of happy that today brought no relief.  It sort of validates that I made the right decision not to go. But I’m still bummed about it.  I even missed out on eating a piece of delicious wedding cake with buttercream icing.  Although, I guess a good thing is that missed out on eating a piece of delicious wedding cake with buttercream icing.   I really do like wedding cake.

(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.)

I’ve come to know many people with TN in the past months (warriors one and all) and each of us have made certain accommodations in our life because of our condition.  Some are clearly significant such as quitting work or moving to a less harsh climate.  Yet others are little things that we do each day to try and minimize our pain.  Taking showers at night instead of in the morning to ensure no splashing destroys our day.  Not eating or drinking certain foods that seem to trigger pain.  Always carrying a scarf just in case a wind – or heck, even a breeze – kicks up to aggravate our delicate nerves.

One of the changes I have made has to do with my hair.  I’ve heard several female TN sufferers indicate that they have cut their hair to make their lives easier and possibly more pain free.  I, on the other hand, have been growing mine out.  It is now just past my shoulders.

For many years I had sort of a bob/China doll hairstyle.  The longest I ever let it get was about chin length.  It wasn’t one of those perfectly smoothed bobs shown on the Vidal Sassoon commercials – I am a person who appreciates jagged edges. The problem with the hairstyle was that I would often wake up with bedhead that could only be described as sculptural.  My hair would be standing up in some places, shifted in different places and sort of bent in a way that could never be reproduced even if I tried.  And due to the gobs of product I use, no amount of combing or flat-ironing could get it any closer to presentable than maybe “crazy bag lady”.  So in order to go out, or even get the mail, I would have to wash and restyle my hair requiring that I aim the blowdryer toward my face to get the bangs right.  And if you’ve got TN, you know that just wasn’t gonna happen.  Plus, if I’m being totally honest, I just got too darn lazy to do it.

So, I’ve grown my hair.  And I gotta say, it feels weird.  It’s like this alien entity has taken residency on my head.  There’s a weight to it that I’m not quite used to.  It looks fine, I think, but it is somewhat distracting.

And therein lies the problem.  I’ve become a flipper.

Okay, there are many definitions to that term, so for specificity’s sake, I’m referring to flipping my hair. I am constantly manipulating it; brushing it back off my shoulders, sweeping it over to one side, twisting it up in a momentary chignon.

And today, while scrunching my hair up on top of my head in a wad while staring at a blank canvas (I take a painting class), I thought, “My God.  I have become Jan Brady.”  I remember watching The Brady Bunch as a kid and seeing Jan, and yes Marsha, constantly flipping their hair.  Jan even had this peculiar gait when she walked; kind of a zigzag motion that made the hair down her back sway back-and-forth with each step.

As I kid, I probably thought it was cool because, even if she was the whiny, attention-seeking middle daughter, she was on TV.  But now that I am 51 and perhaps more self-conscious, it is so not cool.   In face, I think it’s pretty darn annoying.

So I’ve gotta figure out how to handle this situation.  Do I cut it now?  Wait for it to be long enough to donate to “Locks Of Love” then whack it off?  Just keep growing it until it’s long enough where it doesn’t fall forward on my shoulders?

Hmmmm…this is going to take some serious consideration.  I’m just gonna have to move my hair out of the way so I can do some thinking.

(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.)

Question:  What’s even better than finding out you have the most painful medical condition known to man?

Answer:  Knowing it will only get worse.

Well, aren’t I just little Sally Sunshine today?  Actually, I’m in a pretty good mood, but the future is definitely something I think about.  Or rather I think about not thinking about.  I prefer to be in the moment – in the “now” if you will.  That isn’t some kind of philosophical crap about living each minute to the fullest.  It’s self-preservation.  See, if I really start thinking about where I’ll be in a year or five years, it’s pretty damn depressing.

Let’s look at my facts:  I’m a single, fifty years old female and I rarely leave my house, so, you know, men are really beating a path to my door.  (And if you buy that, you are clearly NOT a single, fifty year old female who rarely leaves her house.)  I’m not saying the path to personal fulfillment lies only with finding the right man, but it would be nice to be meandering through the days with someone.  I can’t have a job at present due to the TN and trying to fill my days with something – anything – I can do to help from turning my brain and body into mush is a challenge.  Please know that I am aware that a lot of people wish they were in my position of “early retirement” if only for a little while.  But it’s harder than it seems.  First the financial aspect is frightening, but moreover the psychological impact is even worse.  I’m used to working, talking with people, solving problems, heck, moving.  I don’t need a FitBit thing to tell me how much I’ve walked each day.  I can just count how many steps it takes for me to walk from the living room to the kitchen and multiply that by eight or so.

Okay, I kind of got off topic.  I started out talking about the future.  But that’s what happens.  When the spectrum of the future is laid out before me, I mentally change channels.  My short-term future consists of deciding whether or not to put more ice in my glass of water.  I don’t think of the long-term unless long-term can be defined by how many days the watermelon I bought will stay good in the fridge.

Is it unhealthy for me to not think about the future?  I’m gonna say no.  The reason being that I would probably imagine the worst possible outcome and that just may not be what happens.  Maybe there will be new advances in the treatment of TN. Maybe I’ll go into a remission and be able to work again.  Maybe when I’m out buying watermelon I’ll bump into a single man who has the looks of Kevin Bacon and is as much of a goofball as I am.

So I’m not going to think about it.  I’m just going to go put more ice in my glass of water.

(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.)

It’s 10:15 pm and I’ve been stood up.  I’ve waited for over an hour now.  I wish I could say that I’m talking about a date, but I’m not.  I’m talking about my meds.  It’s been over an hour since I took my nighttime combo and so far, nothing.  I blame myself.  I got wrapped up in reading and took them almost an hour later than usual.  And if there’s one thing people with TN know is that we must take our meds with an accuracy of time similar to that used for the Olympic fifty-yard dash.  One second off and baby, you’re a loser.

So now I wait.  Wait and hope that my delay won’t result in a night spent moving from one room to the next, milling around in the dark, sleepless because of the pain.  I wish it was a date that I am waiting for in vain.  At least then I would have a different focus for my anger.  But it’s me I’m mad at.  Me and this stupid condition.  Me and my reliance on medications no matter how necessary.

And the clock keeps ticking away…

(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.)

This week I have embarked on a difficult and emotional project – I am cleaning out my closet.  Not just cleaning it mind you, but brutally decimating it one sweater at a time.  I have found myself looking away as my hands stuff a pair of pants or a cardigan into a large black garbage bag.  Truth is, I’m not an overly sentimental person when it comes to material items.  I do keep books of course, and my vinyl (I knew it would come back one day), but I don’t have a lot of trinkets that serve as token reminders of past experiences.

Yet, I do keep clothes.  For years.  Decades even.  My wardrobe serves as a scrapbook of my life.  Those black Converse high tops with the bleach splatters?  I got them in high school (30 years ago).  I also wore them in Florida when I was there during Hurricane Andrew.  The white splotches are from tossing chlorine into a pool in gale force winds.  That fabulous vintage beaded top?  I wore it to a concert where I met Johnny Rotten* (appropriate name).  Those Donna Karan pants?  They were the first “expensive” pair of pants I ever bought.  And the tweed blazer?  My aunt passed that down to me when it no longer fit her.

And that’s where I’m at.  Due to inactivity and medicinal side effects, many – actually most – of my clothes no longer fit me.  The weight gain came on so strong that I even outgrew items before I had a chance to wear them.  I ended up with four sizes of pants in my closet – enough to open my own boutique right there in the bedroom.  Heck, just the amount of black pants I packed up was kind of embarrassing.

So far, I have five giant trash bags and one sizable box filled with clothing and I have yet to finish.  It’s like a clown car in there.  I keep pulling items out and yet it never seems to end.  I have prudently knotted the handles of the bags in case I get the urge to start pilfering items back into my dresser.  It is on one hand a good feeling to streamline my possessions (and donate them) yet also sad to see that once again TN has impacted every facet of my life.

So if you’re at a Salvation Army store in Northern Illinois in the near future and see a plethora of like-new black pants or an influx of sweaters sized from XS to L, they are probably mine.  Wear them in good health.  But if you’re trying to find those beautifully decrepit high tops, it ain’t gonna happen.  Some things are too precious to ever give away.

*Johnny Rotten was the lead singer of The Sex Pistols, a completely untalented yet remarkably influential punk band in the late 70’s.