on a walk today

oh hi

just checking in.  I am horribly behind in my blog posts.  Easter, Samuel's baptism, spring break, more birthdays, lots of book thoughts, lots of random thoughts.  I have a list (you know I do!).  I am doing slightly better with dealing with the pain, although the pain hasn't gotten much better.  And I am not so terribly sleepy as I was for awhile there.  Still very sleepy, but not sleeping practically all day every day - so that's an improvement.  But, I'm still not . . . quite . . . myself (if I ever really was whoever I really am).  So . . . as in just about every other aspect of my life, my blog is also suffering.  My apologies.  I know it bothers me more than it bothers anyone else.  So I know I'm writing this little bit more for me than for you, just to make myself feel ever so slightly better, but so be it.
That's all, folks.

 I'm calling out into the echoing silence just to feel like I'm not alone.  The audience has gone dark and I can't see if I'm talking to myself or not.

Anyone still out there?  yes? no?  maybe?

ok.  I think I hear some rustling.  Carry on.:)

Reading Round-Up: Jan, Feb, March 2012 (Part One)

I have been asked a few times in recent months if the pain is still allowing me to read. I mean, I can still do that at least, right?! And, the answer to that is . . . well apparently yes.;) There have been a few times when the eye pain has been so unbearable I can't look at anything. But that hasn't happened enough times to put a noticable dent in my reading addiction. As you can see for yourself.

So here's the round-up with as many thoughts as I can muster right now. Bear with me! (and I have starred the ones I rated 5 stars on Goodreads)

Jan.

*1. True - Katherine Hannigan
nice young adult read. I'd recommend for grades 5-7?

*2. Six Thinking Hats - Edward De Bono
Interesting ways of thinking through issues using Six Different viewpoints or "thinking hats." I found it fascinating. Mostly geared for business/organizational behavior type problems but easily generalized to all interpersonal problems. Giving equal time and emotional space to looking at things from all angles. And giving different thinking types a chance to speak up without feeling pressured or squeezed out of the discussion.

3. The True St. Nicholas: Why he matters to Christmas - William J Bennett
ok, most of you already know about my Santa issues. I found it interesting to look into a little bit of the "history" (or as much as is really known) of St. Nicholas and how he has evolved into the Santa we know today. I have lots of thoughts and opinions about it. Not many people are very interested in hearing them.;)

4. A Girl of the Limberlost - Gene Stratton-Porter
hmm, Indiana swampland, lots of nature love, some romance, overall sweet story. Some over-moralizing.

*5. Raising Cain: Protecting the emotional life of boys - Dan Kindlon
Boys. Oh, where to begin. Lots to think about in terms of the whole nature vs nurture, what is innate "manliness" and what we try to instill as a culture. What is healthy and what is hurtful. How to relate to the men in my life and what kind of men I want my boys to grow up to be. Teaching Emotional Intelligence. That's the main point - and that's it is essential for all of us, regardless of gender.

6. Rogue Wave - Boyd Morrison
Action! Adventure! Disaster! Adrenaline! I don't read a lot of this kind of stuff, but it's not bad. I prefer the non-fiction kind though, actually.

*7. The Fox Inheritance - Mary Pearson
Part 2, from The Adoration of Jenna Fox. Not as good as the first but I still liked it.

8. Boundaries - Henry Cloud
Ahem. Well, you may find that I do a lot of research into various mental health issues and topics. Some relate very personally to things I am dealing with and trying to figure out. Some are just interesting to me and I enjoy reading about and researching. I may or may not reveal (intentionally or unintentionally) which are which. And I shouldn't really care what you think about that. So I won't.

*9. A Million Miles in a Thousand Years - Donald Miller
really enjoyed this, but no specific thoughts to share right now.

10. Boundaries and Relationships - Charles Whitfield
more research. This book wasn't as good as the other one.

*11. Believing Christ - Stephen E Robinson
good stuff.

12. The Amateur Marriage - Anne Tyler
sad and a bit frustrating. But also well-written and an engaging read.

*13. Loving Someone with Borderline Personality Disorder - Shari Manning
Biggest thing I learned from this is the importance of Validating someone else's experience. Even if they don't make any sense to you at all, anything else you try to do or say will be meaningless if they feel invalidated.

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NOTE: Blogger is being really weird and isn't letting me select and block a section of what I've written. So, although I wanted to save the list of books for Feb and March and actually write more about them another time and delete it from here, that's not working. So. I'm going to leave the list. And I will continue this post tomorrow and write more about the rest of the books then.

Whew!!:)

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Feb

1. Michael Vey - Richard Paul Evans
2. The Virgin Suicides - Jeffrey Eugenides
3. Extremely Loud and Incredibly Close - Jonathon Safran Foer
4. The Future of Us - Jay Asher
5. Crossed - Ally Condie
6. Please Look After Mom - Kyun-Sook Shin
7. Quiet: The Power of Introverts in a World that can't stop talking - Susan Cain
8. The Book of Awesome - Neil Pasricha

March

1. My Sister's Keeper - Jodi Picault
2. Boundaries: Where you end and I begin - Anne Katherine
3. Once Upon a River - Bonnie Jo Campbell
4. Under the Greenwood Tree - Thomas Hardy
5. River, Cross my Heart - Breena Clarke
6. Mind Wide Open: Your Brain and the Neuroscience of Everyday Life - Steven Johnson
7. Agnes Grey - Anne Bronte
8. Striking Back: The Trigeminal Neuralgia and Facial Pain Handbook - George Weigel
9. Thirteen Reasons Why - Jay Asher
10. Below Stairs - Margaret Powell

March Photo-A-Day: some more

I missed a couple days this time around. And this is the last batch of pictures (days 20-30) instead of the next batch (days 12-20). I was going to upload them all, but I'm tired and giving up. Bleh.

And can someone tell me why some of my Instagram photos get all streamed into my "Cloud" photostream automatically and some just don't and I can't find them anywhere but in my Instagram feed? I don't get it. Oh well.

Ok here we go:

Day 20: Before and After - Sunset

Day 21: Delicious - that moment just after all the kids have left for school when I can sit by myself in complete quiet. Ahhh.:)

Day 22: Kitchen Sink - um yeah, I deliberately skipped that one.

Day 23: Moon - my husband holding up our kids' toy moon outside in the middle of the night. Turned out pretty well I think. ;)

Day 24: an animal - pic of Leia the bunny that didn't get streamed into my stream and I'm just too lazy to get it from my phone to my computer right now

Day 25: Breakfast

Day 26: Key - our first house key!

Day 27: My name - on a birthday card from my mom:)

Day 28: Trash - there's a lot of it out in this field

Day 29: Feet - I wanted to get a cute pose of all my kids' adorable barefeet. But. It didn't happen. Some other time, I guess.

Day 30: Toy - I just love whales, that's all.

One more batch to blogify for you. Coming soon!!

And no, I'm not doing April photo-a-day. It's a pity, I know. I'm just . . . not.

happy things

Well, so somewhere around the beginning of Lent (even though I don't traditionally celebrate Lent), I decided to put up a Happy Things poster in my room and try to write something on it everyday. I started these on my mission. Just a visual reminder of things to be happy about, little simple things, things to be grateful for, small miracles, things that made me smile, anything really. Things specific to that day. And, even though I know it's really helpful for me to do this, it's been many many years since I've done one. But at this particular time, with this awful daily constant pain, and struggling with side effects of stupid medications, and feeling sleepy, worthless and depressed, I felt like I really needed to do it. And rather than just writing in a notebook or something, I need something very big, very visual and not easy to ignore. So this paper is about 24" by 24" and it's taped on the wall by my pillow. And I have a box of markers sitting near it on my dresser. Using markers helps. And I have no excuses for forgetting.

It's been good for me.

I posted this on my facebook, as many of you know, and I mentioned that I fuzzed out the particulars to protect my and others' privacy. But, since I was asked to maybe share some of my happy things, here are some of them:

- lemon bread

- visiting family

- my earplugs

- kind and thoughtful friends

- late night egg salad sandwich

- walking outside

- no cavities at the dentist

- someone's offer to help

- someone telling me they're praying for me

- finding what I was looking for at the store

- milkshakes

- watching Abigail's track meet

- getting kids homework done

- Zac bringing home dinner, as a surprise

- prescription for Lortab

- new library books

I have written at least one thing every single day. I still cry a lot. I am still in pain. And I still struggle a lot. But it has reminded me that I have things to be happy about. Lots of things. Big things and little things. And maybe each day doesn't seem like much. But looking at my chart all filled up with little happy things seems huge to me right now. It gives me hope.

And that's a lot.

my inspiration

Zac pointed out to me that my last post, where I went point by point through all my symptoms, reminded him of Isaac's Sickness Report that he very kindly wrote up for me a few weeks ago when he was sick. All the kids went through some type of sickness. Isaac is just very thorough and wanted me to have the full report on how he was feeling.


Maybe he was my inspiration in detailing all my symptoms to you.

Or maybe he gets it from me.
You never know.;)

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.

So.

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.:)