Friday, March 30, 2012

ok let's review

Hello friends, just wanted to give you a pain update. Just because it's pretty much all I can think about. Well, that and sleep. This medicine doesn't seem to do much besides make me gain weight and need approximately oh, 15 or so hrs of sleep a day. Awesome.

Here you go though, the complete status report:
(All of this is one-sided, left side of my face)

1. Constant:
- aching burning pain along the cheekbone pretty much straight across the front of my face. Usually above cheekbone, or along upper edge, sometimes right under the cheekbone joins the party, too. Feels sort of like a dentist shot a hyperdermic needle through my face and . . . left it there. Forever.

2. Frequently, comes and goes:
- sharp needle-like pain up along the side of my nose. Sometimes it sticks around and aches for awhile too.
- aching pain around my eye orbit, eyelids, and above eyebrow, sometimes my eyeball seems to hurt too
- sharp ice-pick poking pain deep in my ear

3. Occasionally:
- ache down along jaw
- teeth and gums aching, top and bottom
- tiny needle pokes pain along my upper lip, kind of like stroking down a moustache, in that area
- pinching pain in one spot on the edge of my outer ear

4. Only fleetingly:
- sometimes tingling in that same spot on my ear, or a cold sensation
- tingling along the edge of my nostril
- tingling along one portion of my tongue
- strange taste sensation in that same part of tongue
- weird sensation on roof of mouth
- cold sensations on lips

Exercise, exertion, too much movement of my head or face all exacerbate the pain (talking, smiling, squinting).
Noise, chaos and stress make it hard for me to cope with the pain - but may not actually increase the pain level.
Lying down and sleeping tend to help. Or if I'm asleep I don't really notice the pain, so that's kind of nice I suppose.
The pain ebbs and flows in severity, but remains there to some extent constantly. All day long. Every single day.
I'm up to 400 mg Lyrica, which is an anti-convulsant, so it's supposed to calm down the errant trigeminal nerve that is freaking out and causing pain - but it's not helping. Dr prescribed Lortab for when the pain is making me climb the walls, but it doesn't do a thing at all. OTC pain meds are worthless for nerve pain.
And I think I am also getting occasional regular headaches as well as occasional one-sided migraine-ish eye headaches that make me sensitive to light and nauseous.


I think that's everything.

I have another appt with the neurologist next week. From my reading and research (including Striking Back, the Trigeminal Neuralgia and Facial Pain Handbook), I am fairly certain my condition would be called Atypical or Type 2 Trigeminal Neuralgia. Atypical because it is constant aching pain, and not the shooting, zapping episodes that are typical of TN Type 1. And if that's the case (and it almost certainly is, in my opinion), then it is a chronic condition, tends to get worse over time, usually managed by some combination of anticonvulsants.

There's some more I can write about the theories of what causes it and other treatment options (including major procedures, like surgically opening the skull to get to the nerve root), and how this is all affecting me mentally and emotionally (huh what? me, affected by this?! ha ha ha), but I think . . . probably most of you had had enough for now.;)
(Too much maybe?? perhaps?)

Thanks for reading.
Thanks for commenting.
Thanks for sticking with me through this really stinky time.
And yeah, thanks for everything.:)

Tuesday, March 27, 2012

Thoughts for today

Embracing my vulnerability and letting myself feel.

How about you?

Wednesday, March 21, 2012


“I want to know if you can sit with pain, mine or your own, without moving to hide it or fade it or fix it”

- Oriah Mountain Dreamer
So, I've actually had this quote sitting in my drafts box for 2 years now, waiting I guess for the perfect moment to share. I guess that moment has arrived. Because aside from the obvious physical pain I am being called upon to "sit with" and endure lately (and can't do much about), there has also been some rather personal emotional pain gnawing away at my heart.
And I am having to learn to sit with it. Just sit. This quote keeps coming to my mind and kind of mulling around with me and asking me to sit and feel the pain without moving from it. It's hard. It's kind of like what I've read about meditating, where you might feel the urge to scratch something that itches, almost irresistibly, on your back perhaps, just right there where you know you could reach it, and . . . you just observe the itch, feel it's itchiness, and you let it itch, and not move to scratch it.
Sit with pain, and not move to hide it, or fade it, or fix it.
Can you?
Can I?

Monday, March 19, 2012

Eight is Great!!

This boy had a birthday! He's 8 years old!!!

We had a party just for family on his actual birthday.

Then we had a friend and extended family party over the weekend.
He loooves the Paper Jamz guitar from Grandma.
Then we had a fun time skating, bouncing, climbing, playing arcade games, drinking "green" soda and all kinds of excitement.
All in all, I think Samuel had a fantastic birthday!
Love this little boy and his huge grins and loud laughs. He has so much energy and strong emotions, positive and negative. He knows what he likes and what he doesn't and expresses his feelings loudly and often! He adds a lot of life and excitement to our life and we wouldn't have it any other way.:)

Monday, March 12, 2012

March Photo-A-Day #1

Working backwards:
Day 11: Someone I talked to - that guy in the middle there.
Day 10: Loud - um yes. They are.
Day 9: Red
Day 8: window
Day 7: something I wore today
Day 6: 5:00 - pile of papers brought home by my first grader.
Day 5: Smile - vintage 70's doll my sister and I played with
Day 4: my bedside - I love my tiny drawers.:)
Day 3: my neighborhood (at 5100 ft)
Day 2: Fruit
Day One: Up
Some of those are really pretty boring, I know. But it's still fun for me to take some time and try to get a shot of the theme, somehow. Eh whatever.
I am having a hard time thinking about much besides my face hurting. I'm getting through the days a little bit better, but the pain hasn't changed much at all (even though I've been increasing the Lyrica dose by 50 mg every 5 days). I'm just counting the days until I can see the neurologist again (this week!), pester him into a better diagnosis and see what he wants to do next. I'll get the results of the EEG and bloodwork (I'm assuming it won't tell us anything though).
There are some other things I have wanted to blog about but I just can't seem to get myself to do it yet. I am still sleeping more than usual and struggling to do much of anything. So!!
But Birthday season is upon us (remember all our kids were born in the spring?!? yes. yes they were) so there is all sorts of busy-ness and planning and shopping and fun times ahead. That's about as far as I can get in my thinking. Face pain and birthdays. That's all I can deal with right now.
Oh - and Photo-A-Day. That, too. ;)

Sunday, March 4, 2012

Turning Around (thoughts on pain and truck driving)

I think we'd all agree that there are many varieties of pain. Pain varies in intensity, duration, quality and actual nature. I've come across checklists that include words like shooting, burning, shocking, boring, searing, throbbing, aching, constricting, exploding, stinging etc etc. You get the idea. There are lots of ways to talk about it.

Based on my experiences up til now, I have always thought of pain as being primarily 2 different types.
1.) The pain of something being wrong: injury, illness, etc. This is the body's alert system, a sign to fix something.
And then there is 2.) the pain of labor and childbirth. This is fundamentally different because the pain of contractions is a sign that the body is doing exactly what it's supposed to. You can't fix it. It actually means things are progressing! It's a good sign. Hooray.

I consider myself somewhat knowledgeable on the pain of Type 2, having delivered a 9 lb 5 oz baby completely naturally (and then in subsequent years, likewise delivering a 6 lb 15 oz and a 8 lb 1 oz. baby). And through those experiences, I learned a bit about how I deal with pain.

I learned for instance, that I mostly like to be left alone. I don't want other people giving me a lot of suggestions, distracting or bugging me, or even talking to me (Zac was allowed to touch me, but that was it). I deal with it by withdrawing inward and focusing. Deep breaths and conscious efforts to relax. Being aware of physical tension in my arms and shoulders and releasing it (because tension tends to increase the perception of pain). I knew it was temporary, no matter how eternally long it seemed to be. And I knew I could endure. If I could shut down everything else and just focus on getting through the pain, I could do it.

This sometimes works to help with the first type of pain, too. Sort of. Things like dental work, when you know you just have to deep breathe for a short while until the Novocaine kicks in, or having blood drawn, or those kinds of necessary but painful experiences. I can deal with those.

And bigger, deeper, longer lasting and more intense pain, I tend to need to be alone to deal with it. Headaches. Gall bladder attacks (before I had it removed). But again, I knew it would go away eventually. I just had to wait it out. I just had to let the pain take over for a little while until it ran its course. I had to let everything else go and just survive it, for a while.

But then there's this. This nerve pain. My usual coping mechanisms aren't working. Because it doesn't fit any other pattern. This will not go away. It may not be fixed. Or, if it does, I have no way of knowing how long it will be before it does. It's entirely possible it won't. So my natural instinct to withdraw and focus and wait . . . just won't work anymore. Because I can't function like this. I'm not functioning.

I know I can't keep going on like this. Somehow I need to change the way I am approaching this pain and dealing with it. I need to turn around and back myself out and try a different route because this road isn't taking me anywhere. I know this. I have to keep going and learn how to function in spite of the constant pain. In spite of all my impulses and all my experiences telling me to do otherwise, I have to learn to ignore it. Push it aside. Distract myself. Something. I don't know yet.

But I am not a compact little mini-cooper (or whatever) that can change its mind and flip around on a dime. Ohhh no. I've discovered that I might be a little more like a huge 18-wheel tractor trailer, hogging the road, needing some huge extra buffering space to maneuver around. I might have traffic blocked in both directions, cars honking, getting impatient because I'm in their way. I might even need someone (or a few someones) to get out and help direct me because I just might run into something if they don't. I might cry. A lot. I might get going forward and jerk, and go back and slam, and might stall the dumb thing and end up jack-knifed, get frustrated and use some colorful language that I wouldn't normally use, because 'what-the-crap!-I-don't-even-have-a-license-to-drive-this-thing!' Whoever thought I could do this must have been insane.

But here I am.
I will take this and get it turned around eventually.
Because I have no choice.

Be patient with me.

Thursday, March 1, 2012

Belated Leaping

In belated celebration of Leap Day, here are some interesting thoughts I uncovered on leaping:

The artist never entirely knows. We guess. We may be wrong, but we take leap after leap in the dark.

- Agnes De Mille

When in doubt, make a fool of yourself. There is a microscopically thin line between being brilliantly creative and acting like the most gigantic idiot on earth. So what the h-ll, leap.

- Cynthia Heimel

All growth is a leap in the dark, a spontaneous, unpremeditated act without benefit of experience.
- Henry Miller

I wanted to do something to celebrate Leap Day, but I struggled coming up with much of anything. Except our Girl Scout cookies were delivered - so we ate them happily. But perhaps it'd be easier to think about some of these things in a Leap Year sense, giving us this entire year to leap into growth, new things, creativity, taking chances, embracing change, accepting the unknown, moving past regret, forgiving, doing things more fully, more joyfully, more gratefully. What do you think? What would you do to "take a leap" this year?
Now's the time.

Happy Leap Year.:)
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