Sunday, November 25, 2012

I will love you, again

“to love life, to love it even
when you have no stomach for it
and everything you've held dear
crumbles like burnt paper in your hands,
your throat filled with the silt of it.
When grief sits with you, its tropical heat
thickening the air, heavy as water
more fit for gills than lungs;
when grief weights you like your own flesh
only more of it, an obesity of grief,
you think, How can a body withstand this?
Then you hold life like a face
between your palms, a plain face,
no charming smile, no violet eyes,
and you say, yes, I will take you
I will love you, again.”
- Ellen Bass

Last night I found this poem that I copied into my journal a couple years ago, I think I may have even posted it here on my blog, and I was reminded of it again today as I read a talk about enduring trials and having hope.

Ironically, I identified with these words then when I was "just" dealing with depression, which certainly seemed hard enough. Now I have this chronic facial pain crap, along *with* the depression, which uh, well sometimes makes me want to swear and throw things. And sometimes leaves me sobbing on my floor.

And I struggle. I struggle to take life between my hands and look it in the eye, this life, these trials I have been given, and say, yes I will take you. I will love you, again.
I will take you. I will love you. Again.

That's what I am reaching, hoping, praying, struggling and striving for.

(Oh, help...)

Monday, November 12, 2012

A fresh start with more of the same: Neurology update

Awhile back I decided to switch neurologists.  I wasn't very pleased with the actual Dr, although the Physicians Assistant I saw was ok.  Then the office staff really ticked me off, giving me a hard time about faxing a form over for me with a medical excuse for releasing me from jury duty.  Anyway - called and set this appt for 2 months out.  Eventually cancelled my follow-up at the other Drs.  And today I got to see the new Dr.  Hooray.

Last night I spent a few hours scouring over my planners and prescriptions writing down appt dates, and medications/dosages I've tried, names of all the Drs I've seen etc.  I couldn't find or remember the name of the neurosurgeon I saw - but I think I got everything else.  Handed this new neurologist, Dr Z, this 3 page chart I put together.  haha.  I'm really hoping that was helpful for her to see everything I've already done, tried, gone through, endured etc.

And so she did a full neurological exam, reflexes, balance, sensation, etc. And then she suggested switching to a different anticonvulsant. She said we have tried a lot of meds, but have by no means exhausted all of our options.  Yeah.  So I'm going from carbazepine (tegretol) to oxcarbazepine (trileptol) since I was hating the side effects on tegretol.  Trileptol typically has less side effects AND doesn't require blood work to monitor liver function.  Duh!  She also prescribed a lidocaine ointment I can try (yes on my face) to try to numb out the pain a little when it gets bad.  It's not always effective but worth a try.

She also said that my reflexes are a bit "brisk" (or overreactive) which can sometimes indicate a spinal cord compression, in my case in the cervical spine.  The trigeminal nerve also goes through there in its path out of the brain (or something) so she recommended an MRI of my cervical spine (neck) to check that out.  She also wants to do an MRA of the brain which shows the arteries and can show if there are any arteries pressing on or twisted around the trigeminal nerve (finally!!!!).  And then, also she wanted to follow-up on that little tumor (schwannoma or meningioma) that showed up on the first MRI but on the other side of my head (so not causing my actual pain).  She said these need to be monitored to make sure it hasn't changed or grown.  And since it's been almost a year since my first MRI, she'd want to follow-up on that regardless.  And it's not clear on the report whether a neuroradiologist or a regular radiologist looked at my MRI and wrote up the report, so this time she wants to be sure we have it done at a hospital where she knows there's a neuroradiologist to take a look at it.  Good idea.

So, after waiting about 30 min while the nurse called hospital to schedule it for me, I have the 2 MRI's and MRA scheduled on Wed.  It will take about 3 hrs total (with my nice friend Valium)!  And then I go back to Dr Z in 2 months, giving the new meds a chance to start working (such a slow process). 

And that's where we stand now!  Not much has really changed . . . but hopefully a new start with someone who is making sure we are really not missing any pieces of the puzzle.  Phew.  I am really hoping we can figure things out ...

Wednesday, November 7, 2012

Halloween 2012

 This year we had a zombie DJ (?), Clifford the Big Red Dog (for the 2nd or 3rd time), a witch (who insisted on the green face), and a cat faced tutu-ed teenager (?).  I don't know.  I hate halloween.  I hate coming up with costumes (or not) and I kind of give up and don't care... very much.  Especially this year.  Just . . . whatever.  Get candy.

 We made it to see our fantastic neighborhood "Thriller" flash mob which was pretty dang cool (except Elisabeth started whining, "can we go trick or treating nooow?!").

Samuel and Elisabeth ran so fast from house to house it was hard to get any other pictures of them.
Isaac liked to exude an exterior of nonchalence, but underneath he was serious about candy.  And Abigail was just silly.  Dancing along the sidewalk, silly.
And finally, Elisabeth was a moody little witch. 
Here she is explaining, none too patiently, to Samuel that this picture was for her only.

And the picture, of her only:

Happy Halloween.

Sunday, November 4, 2012


After missing posting 2 days and probably spending today in bed again, I have decided that NaBloPoMo is just unrealistic for me right now. I know it's early in the game to give up already but I would really feel better if we could all just pretend that that last post about posting every day was just a funny little typo, ok?

I hurt so much.
And my mind is a mess.

I give up.

Thursday, November 1, 2012


oh hey guys!
Remember this? 
National Blog Posting Month
where you post every day
for the month of November.
I've been doing it every year for a few years (even though not all of them are on this blog).
So I'd really hate to stop now.
Ehhh I'll give it my best shot, anyway.
Ready, set, NaBloPoMo!

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