Insomnia

Well, hello. It's 4:05 am and I'm not even sure if I've been awake all night, tossing and turning, before I finally got up out of bed at around 3:45, or if I fell asleep for a couple hrs before waking up at about 2 am (when I looked at the clock), and have been unable to fall back asleep. Either way, it really stinks to be awake and it's been happening more often lately. I don't know exactly why. I know my mind is full of a lot of thoughts. I know I have anxiety that often keeps thoughts running through my head. I review things that have happened, and think of things I need to do, or things I wish I could say to people, or whatever else. Sometimes I just feel bad. And even though I know I should relax and not worry, or let things go, or get over things, or not ruminate, sometimes it feels impossible. I don't know how to get my brain to stop. Sometimes I don't even realize how bad it is and that I'm really having trouble sleeping until suddenly it's 3:30 am and I realize I haven't really slept at all. Ugh.

This is a relatively new thing, too. I used to have trouble falling asleep sometimes, but never like this. Sometimes I'll take something. Tonight I just took 2 Benadryl and I'm waiting for it to kick in. I have anti anxiety medicine and a muscle relaxer I sometimes take. Sometimes with the benadryl, other times just together or one alone. I haven't figured out the magic pill yet. Although I'd rather not have to be taking something to sleep. Sometimes the pain is a culprit in keeping me awake, but right now my pain isn't even too bad. I'm just awake.

Anyway - I thought that maybe if I tried to write a little bit, it would help me. I'm not sure if it has. But that is what is going on in my life right now, so why not write a blog post about it, right? I suppose. So, hello to any fellow insomniacs. I am sad and stressed to be joining your ranks. If anyone has any tips, I'd love to hear them. I'm going to try to go to sleep here soon, again....

the unraveling

It's a dreary day here today but I have my window blinds up and light blocking curtains open, which is unusual for me.  And I have music playing (my ipod on shuffle, always an adventure) and I'm determined not to fall back asleep. I want to write, so here I am. I don't have anything in particular in mind to write, I've just had so much on my mind I've wanted to write, and I finally looked here yesterday and was shocked to see that the last date I posted was in January.

So many things have seemed to come to a head. Not that things ever go along in straight line progressions, lining up neatly along graphs, building along, to come to some perfect conclusion, or resolution. No. But some things seem to be stretched until the breaking point. Or explosions. Or build into toppling block towers.
I don't know.
But there seems to be a a misconception out there of the "right" way to be sick. There is some unspoken, mystified, noble way to get sick, remain sick, and then, if you're going to be "really sick" eventually heroically either overcome your sickness or stoically die from it. I think I am breaking an invisible code by speaking of this, but I feel it. I feel it in the memes I see floating around the internet and in little things I hear and from things that I hear from other people in support groups, that they hear from people. That the "right" way to be sick, is to not complain about our ailments. And if we're in pain, certainly no one should ever know it. It is far better to suffer through things for everyone else's sake and hide our pain.
That's what everyone will want to hear about at the funeral, right? How they put everyone else first. How they never complained about the pain. You never even knew. That's the noblest way to die. The best way to be sick. That's doing "right."
But that's not how it happens for everyone, is it. That's like the storybook version.
You won't hear the storybook version from me. And I'm not even dying, so you don't get the heroic ending here.
There won't be people standing up at my funeral saying how I never complained. hahahah!!!

No, here things fall apart. Here you will find the wells of patience running dry. You will find the 8 year old crying that she didn't get as many years of me healthy as the older kids did and how that isn't fair. You will find me locking my bedroom door and telling the kids they can't come in - because they are just too loud and every sound hurts. You will find Zac losing his patience with the kids because he worked all day long and came home to make dinner and then deal with the messy house and kids who need attention, and then trying to gather the kids for scripture study and family prayer, and then getting them all to bed all by himself, while I am locked in my bedroom the entire time curled in a ball, and he hasn't even had a chance to say hello to me yet. Then after the kids are in bed and the house is finally quiet, and I come out to say hello to him because I finally can, I find him asleep on the couch because he's exhausted, And we find days go by without being able to hardly talk because these are our days now and we are both becoming completely depleted.

Here you will find me driving myself to the emergency room because Zac is in the middle of cooking Easter dinner for the kids and he just can't face it because it's too hard. Here you find us facing things we've never faced. Together and alone. Voicing things we'd never thought we'd say. Like, I couldn't come be with you. And, I don't know if I can do this. And, I'm so sorry this is our life.

Things aren't always bad. Don't get me wrong. But like I said, something just reached a point and things just started unraveling. And my neurologist gave up on me. That's a long story in itself. I've found myself grasping at the unraveling strings, trying to hold everything (and myself) together. Sometimes I wonder what will be left.
It's a funny thing sometimes, watching yourself and your spouse as you go through something unexpected like this. Neither of you can anticipate how you will react. You never can. You think maybe you can, you think you can prepare spiritually, emotionally, whatever, for hard times that might come your way, and you think you know someone, and you think you can advise someone else on how they should be acting or what they should be doing in a situation, but unless you are in it, and unless you are them, you cannot know what you would do.  You just can't. And you just won't know what you do, and how you would act, until you are in it. Like in a plane crash, some people freak out, some people are calm in crisis. Some people naturally help others, some the survival instinct kicks in so strong they only think of themselves. They say many people can't even remember how to unlatch the seat buckle because it's different than a car seat buckle. That's how much muscle memory and panic sets in. So don't think you'll know what you'll do. You don't.

And sometimes, it's hard seeing yourself and someone you love as you go both go through this together.
You're both getting a crash course in survival. And you don't know what to do. And then things change, and you start over again.

On a final note: in our house you will also find 4 kids growing fast and becoming their own fascinating individuals and trying to learn to get along. A husband who is giving all he can to his wife and family, who worries about providing financially for all of their needs, and does his very best to keep on top of everything that his wife can't do. A wife who receives loving and thoughtful surprise packages from a group of high school friends who are unbelievably kind. And a beautiful world all around us to notice and take photos of. Life is good.

As I saw in a quote today: "The world is larger and more beautiful than my little struggle." - Ravi Zacharias

It is.

keep me here

(I was writing on facebook that I was struggling but that I have a wonderful husband and kids and that sometimes they are all that keep me here and I was reminded of this poem I wrote in 2010, before any of this other pain stuff started. It was just when I was struggling with depression, as I have for many years.  And anyway, I just thought I'd share it. I don't often share my poetry but now is as good of time as any I suppose. I don't feel a lot of hope right now.  But time passes anyway. It just keeps going. Here's the poem.)


(Nov 13 2010)

keep me here

I am tethered
to the earth
by these strands tied to me
gratefully knotted
around my wrists
and knees
keeping me
from disappearing.

I am bound
to this life
by seeing your face
and knowing the pain
I could cause
if I were to go
and leave you

But I can feel the tug
and pull
and strain
as something else fights to
drag me away
I can feel the
strands digging into my
flesh
and wonder
how long they will hold

and sometimes I
wish
I were not bound
and did not feel
the love
which holds me
So that I could go
and drift away
because sometimes,

you are all
that keeps me.

treading water

You know that feeling in a swimming pool when you think you've reached a point where you're at a depth where you should be able to reach the bottom so you stretch your feet down, and then all of a sudden you can't find the bottom, and your chin dips under the water, the bottom isn't where you thought it was at all, and all of a sudden there's that moment of panic, disorientation, almost of falling, sinking? For a moment you keep going down, how far down it is to reach the bottom? You don't remember the water being this deep. And you can't find it. You bob back up to the top, gasping for breath, looking for air. Are you where you thought you were? Everything looks the same. But everything underneath your feet has somehow changed.  You look around you and everyone seems to have not had any trouble navigating this new depth. Did they grow somehow over time and you missed it? Are they all taller and breathing easily over these inches of water that are suddenly over your head? They glide easily through the water where you are left treading water.

I feel like I am perpetually stuck in a moment like that. That feeling of losing your footing and not being able to find the bottom of the pool. The water feeling too deep somehow.

And yes, I see it. I know how to swim. Of course I can do this. I can get through this. But it takes so much more out of me to tread water and swim everywhere, when I used to be able to walk easily through these depths. And sometimes, I can hold my breath and pretend to be the same as I used to be. I carry rocks in my pockets and walk along on the same ground as everyone else, underwater, and I try to smile. But I can't for long. I have to come back up to the surface to catch my breath and stop and tread water again, while you go on ahead without me. Or I bob up and down, in a crazy lopsided way, grabbing my breath and coming in and out of the water, and you will wonder what in the world I'm trying to do, but I'm just trying to stay doing what I remember I used to do. It's not at all how I remember doing things. I don't remember everything shifting below my feet like this. I don't remember how everything looked so much easier to everyone else. Did I really used to glide so easily like that too? Just doing things? Was it really ever easy? I might have always been somewhere on that edge, slipping and sputtering with water at my chin.

This is what it's like living with chronic pain. Some days are harder than I ever think possible, in ways I never expect and I never feel like anyone truly understands. I feel like the ground under my feet is constantly being pulled out from under me and I can barely tread water and keep going on the bare basics.  I don't know if anyone, even Zac, can ever really grasp how overwhelming it all can become in some moments. Pain and depression coupled together are nasty nasty unrelenting beasts.  They are like underwater serpents grabbing my feet and trying to pull me under. This water is perilous. There are too many ways to go with this metaphor. Let me just suffice by saying please help me along the way, if you see me struggling to stay afloat.  There are monsters swarming beneath my legs, and I cannot reach the bottom, even though it seems like I'm tall enough that I should. And sometimes I've been treading water for far longer than you may realize and my arms may just be at the end of how long they can hold out and burning and screaming for rest. Please be patient with me and I will try to do the same for you. Forgive me when I am tired and overwhelmed. There are no excuses for poor behavior ever. But maybe understanding can be a salve for hurt sometimes. That's all I ask.

Things You May Not Know About Me (Bonus Edition)

If you've been on Facebook lately, you've seen the thing going around where someone gives you a number and you post that many things about yourself that not everyone may know about you. But not all of you may be friends with me on facebook and some of you stalwarts may not even be on facebook at all.  I know. 

 So, I am reposting the 8 random things that people may or may not know about me. And then, as a BONUS for those of you that already saw this on my facebook page, I am going to give you some extra stories that you may not have already heard!! So keep reading, you won't regret it!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
  Alright I was given the #8 so - 8 things people may not know about me. I've made a lot of new pain buddies and many people who have only known me since all of that started so there are some things that people may not know about me before all that started such as: 

1. Right as my pain was starting I was training for and completed my first and only sprint triathlon. I miss really exercising. 
2. I read approx 100 books a year on average and I will read books about just about anything.
3. I've written in over 50 journals.
4. I birthed 3 of my 4 children naturally and breastfed for a total of ... approx 6 1/2 yrs - lol.
5. I never figured out what I wanted to be when I grew up. I was interested in too many disparate things. This still really bothers me. I'm a stay at home mom, which is what I really wanted. And now I am mostly bedridden with pain anyhow. But if I wasn't those things, what would I be? I don't know.
6. I consider myself a half expert in ultra marathon running since my better half is an ultra runner. It's a funny thing being a spouse of a crazy person like that. 
7. I play the violin but it's another thing that is aggravated by the facial pain. I haven't really been able to play.
8. One thing I love that not many people know is bread making. In another life I think I'd like to live in Germany and own a bakery. Yummm.

One thing I learned when my older sister did this on her facebook is that when she and I were quite little (I was 1 or 2, and she was 4 or 5), my parents apparently picked up a hitchhiker and had him sit in the backseat with us. He proceeded to threaten my sister and I with a knife to rob my parents or something. My sister remembers this happening to her. I obviously do not - but I'm still kind of disturbed to learn about it.

Another thing that happened to us when we were very little is that my mom was traveling alone with us by train to visit relatives once and when the train was crossing a bridge over a river it crashed and tipped over and everyone had to walk along the windows to evacuate. I was a baby and so my mom was carrying me. My sister was 3 yrs old and my mom was holding her by the hand. This was in the middle of the night, so it was dark and she could only hear the river rushing below them. I imagine this must have been terrifying.

One thing that I do remember happening when I was little was when we had a copperhead snake on our back patio. This must have been in the somewhat early 80's. Our neighborhood had it's own police force so my mom called the police and the officer came to our house and blew the snakes head off with a rifle. I'm not exactly sure why this was the best course of action, but it saved the day!

We had a lot of snakes around our semi-rural neighborhood when I was little. I remember a time when I was riding my tricycle around my driveway, I must have been around 3 or 4, and I came around to the front of the house to our sidewalk and there was a huge black snake in the middle of the sidewalk and it reared it's head up at me. I have no idea what kind of snake it was but I was absolutely terrified and I just jumped off my tricycle and ran away.

It seems that we also somehow had snakes that got into our basement somehow. I don't know how it happened. Mom? Dad? Someone might be able to tell me how we got snakes into the basement. It might have had something to do with flooding. I'm not sure. But then I developed quite an irrational fear of having snakes in the basement. I had nightmares about it for years.  In fact, it's entirely possible that this didn't really happen and it was all just dreams but I really hope that's not the case because that would be really freaky.  I really think it did happen once and that's what started the nightmares.  And my new neurologist is also a sleep specialist and he asked me a lot of questions about my sleep and dreams history and he says that it's really not normal to become confused between what is real and what you have dreamt. So. Yeah.

I also had fears of seeing Giants looking at me through our second story windows. No idea why.  And tornadoes.  I had a huge paranoia of tornadoes. I had heard that they sound like trains so I would lay in my bed at night, listening to the wind and straining to hear if it sounded like a train approaching, my heart pounding.  I also slept on the top bunk of a bunk bed and I was so afraid of a tornado coming, I would move to the floor to sleep, because I thought that if our roof blew off I'd surely be the first to go with it and I didn't want to get blown away by myself.  This was when I was about 9 years old. I know this kind of fear is developmental as children learn about the world and become afraid of all the bad things that can happen but I'm not sure if all kids are as afraid as I was or for as long as I was. I don't really know.

Anyway - so hmm there's an interesting collection of stories about me that you may not have already known. Some interesting little traumas I don't even remember which reminded me of some little weird memories and some of my early fears. What were you afraid of as a child? Do you think my fears were unusual?  Do you have things you dreamt that you can't remember if it really happened or not? Do you think early traumatic experiences that you can't even remember can still affect you? 
Anything else you feel like commenting?  Please do.:)

Fourteen: a "blogging-as-therapy" post

If you're a long-time reader of my blog, you may remember that I went through a stage when I was very self-conscious of who I was in my youth. I was kind of embarrassed by it, in a way I guess. I had issues with integrating who I was with who I am. Yeah, I just had issues.  We all have issues, right? It's no big deal. And I am mostly through with it. I've worked through it, partly through writing some great blog posts on here where you guys helped me come to terms with who I was and who I am and that it's all ok and no one really cares and it all works together to make me who I am and I can like who I am and like who I was, even though I may not like parts of who I was and still not like parts of who I am now and still want to become better even though I accept where I'm at and everything will all be ok.  It really will be ok. I don't judge you and you don't judge me and we try to create a safe space here on my blog where we all have our own stuff, right? Because we're all imperfect and we're all just doing the best we can. Ok.  So we're all clear on that.

So. But sometimes I still like to use my blog as therapy. Writing is a great therapeutic tool.

And so you see my daughter, my oldest daughter, my firstborn, this one that turned me into a mother . . . she turned 14 in May . . . 14?! How can this be? Yes. 14.  And this turned my head around and whipped my mind around in circles and kind of kept me up at night in reflective thinking, flashbacking to some kind of memories and aching and wondering how such silly old memories could still seem to hurt so much, remembering and wishing I didn't remember some things. Then wondering how she and I are so different and our experiences will be so different (of course, because we are different), but then how we might be the same, and how can I be her mother, how can I best help her through these years, and why were they so hard for me, why were they just so hard and what was I supposed to learn from them . 14 was a transformative year for me. A hard year in a lot of ways. Much of this was through my own dumb choices which I recognize, but which I was blind to at the time, I guess. Who knows. What do we really know at 14.
14. Ugh.

I turned 14 in the middle of 8th grade. I had already had 5 so-called "boyfriends" (eeeeek, please please remember that little clause about not judging too harshly). I'd had a boyfriend attempt suicide. A friend who had been raped. A few friends who used drugs (although I had never had it offered to me). And one of these so-called boyfriends who did clearly only want "one thing" - he asked for it as his Christmas present. Nice. I had my older sister call and break up with that one for me - because I was very clearly mature enough to handle this on my own. hahahahahahah.

 I also got mono at the end of 8th grade which meant I was very sick for what felt like forever. I ended up in the hospital  for 3 or 4 days with abscessed tonsils that had to be drained. Then towards the end of that summer when I was 14 I had to have my tonsils taken out, which was awful. So it felt like I was very sick that entire summer.

Anyway, I don't know how others would have described me at that time. I guess I was shy? Insecure? Self-conscious? That sounds pretty typical of a teenage girl, but I think maybe it went beyond that.

You see, I had a problem with talking.
Let me explain.

My first "boyfriend" was in 6th grade, but I've told my kids that we didn't even talk, so it hardly even really qualified as a relationship.  And that's no exaggeration.  I mean I did not exchange words with this poor boy, ever. I even called him one night (our one and only phone conversation) and we said hello and then sat on the phone listening to each other breathe for 20 minutes. I kid you not. I'd like to say we share equal blame for this, which I suppose must be true to some extent.  But I just don't really understand it.  Why didn't we say anything to each other?!? How did that even happen? I don't know. And then the thing is, this kind of thing kept happening throughout my relationships.  So I began to see that it must be me.

It was excruciating.

 I think all of my so-called boyfriends had given me lines at some point such as "you should talk more" "why don't you talk" "you're too quiet" "what are you thinking" (except for the boy who I never actually talked to).  These words would swarm around my head like bees and buzz so loudly I couldn't hear anything else until I couldn't even hear any of my own thoughts anymore and I would clam up even more than I had been before.  Teenage Kristen Rule #1: If you wanted me to talk, don't bring attention to the fact that I wasn't talking.  Some of the time, until they brought it up I wasn't even aware that I "wasn't talking".  It was just comfortable quietness or listening to them talk, or laughing, or whatever.  But then.  Once I was aware.  Then it always became awkward self-consciousness. Which I hated. Was I talking enough? What if I wasn't? What if I was too quiet? Was it not ok to be quiet?  Other times, usually when I was very emotional, I would have so many thoughts and feelings and something would happen where I would physically shut down and I could. not. talk.  I could not make words come out of my mouth.  It is very hard to explain - but it's almost like standing at the edge of a high diving board and just not being able to make yourself jump off. I would be frozen. Shut down. One of those things.  Anyway.  And it just kept happening.  So I knew it just wasn't one other person who felt like I didn't talk enough.  It was me.  As a 13 and 14 year old girl I felt very acutely that something was wrong with me.

Summer after 8th grade. 14.
My first church youth conference. I had a boyfriend who was going. This was a boyfriend who would take the phone and play basketball with it sometimes across the room sometimes when I wasn't "talking", just throwing it into the trash can over and over, and I would sit in silence.  I remember that. Why did I sit there? I don't know.  I can't remember if we had broken up officially at that point when we went to youth conference, maybe we had. Maybe we were kinda sorta getting back together.  I don't remember all the details.  We were riding in big charter buses to drive several hours to a college campus for the conference.  I sat next to him. He leaned his head on my shoulder and slept. I really liked him. I thought I did. I had a heart that liked too much too early and yearned to be liked - and I mistook all sorts of other things for being liked in return.  How could I have protected myself? This is what I ask myself. Maturity would have helped. Self-confidence... Why didn't I have any?  I don't know.

At any rate, as things went on at the youth conference my 14 year old self felt like I was being given very clear signals that this boy still liked me and we were very much still together.  There were unmistakable signs. Clear actions on his part.  At least the first night there were.  And then the next day there were various workshops to attend etc and I felt like he ignored me completely. We didn't go to workshops together like we could have. Or go eat meals together at the cafeteria. I didn't see him anywhere, although I tried.  He didn't try to see me. I felt discarded.  He didn't talk to me again for the next 2 days of the conference.

The last night of the 3 day conference there was a dance. I was tired of feeling so confused and sad and used.  I waited around at the dance for him to show. He did.  He didn't ask me to dance.  I gathered every bit of courage I had and asked him to come with me for a walk outside so we could talk.  Because we needed to talk . . . . didn't we?  Because I needed to know why he'd been ignoring me.  I needed to know where we stood.  I needed to know why he had acted (very clearly) that first night like he liked me if he really didn't.  Oh my poor little 14 year old heart.

So we walked down a sidewalk and sat down on a bench. I had words in my head that I wanted to say. So many words. Like a huge puzzle of words. I had to say them. I had to. They were exploding out of my head, but it felt so hard so hard to get it out of my mouth.  And we sat. We sat. The silence. The longer the silence built, the harder it became to say anything at all. What was wrong with me? What was my problem?!? He started picking flowers off of a nearby bush and dropping them on the ground and crushing them beneath his shoe.  I watched. Agonizing.  And we sat in silence. And I felt paralyzed. I wanted to speak. I wanted him to speak. I couldn't get any words to come out of my mouth. Nothing.  I felt like I couldn't even move. I don't know how long we sat there.  How long could it have been....?  Finally he said something like "well, if you're not going to talk, I'm going to go."
And he stood up and walked away.

I sat.

I looked at the crushed flowers on the sidewalk by my feet.

The next morning we boarded the buses to go back home. All of my friends, including this boy, somehow ended up on a different charter bus than me. I don't remember how that happened, as we had all been on the same bus when we had come.  As if I wasn't already feeling crushed and heartbroken enough (and also hating, hating myself), for some reason this added to it.  I sat in a seat by the window, overwhelmed by such overpowering feelings I could not even deal with it. It wasn't just the sadness, although there was that. It was the self-loathing - this not being able to believe what had happened, not wanting to accept this part of myself, this way that I was, this thing I did. Then the rejection. And feeling alone. And the happy noise of the bus all around me but not being a part of any of it. And it was too much.  It was too much for some part inside of me that just broke into pieces.  And it was then, on the way home from youth conference on that bus, there in that window seat, sure that no one was paying attention to me (and they weren't), that I first self-harmed. I won't go into details because you really don't need to know. But I feel like this was the age (if not before) when I began having depressive episodes.  This was definitely the beginning of one. I feel like they continued ever since although I didn't recognize it as such until much much later.

And I hope you don't feel like I am placing any blame on this particular boy or what he did, although rejection can certainly play into triggers for this kind of thing. My goodness, I can only have very vague and compassionate views of what goes on in any 14 year old boy's head. And certainly I am very forgiving of any poor boy who did his best to like/love me back in my teenage years. Sigh.

14.
And so, that was one of the defining turning points during the summer after my 8th grade year.  Along with having mono/being hospitalized with abscessed tonsils and then getting my tonsils taken out. It was just a bad summer.

My problems with talking, by the way, continued to plague me well throughout my dating years, even into my marriage, although Zac has been able to patiently work that out with me when I would shut down over the years.  It's been a hard long process even with him, which I am somewhat embarrassed to admit. But he never told me I didn't talk enough or that I was too quiet. So that is to his credit.

So, you may think I am making a bigger deal out of all of this than I should. I certainly don't see any point in comparing what should be a big deal and what shouldn't. And this is just my story, one part of my story - I can only tell my own and what it meant to me. I look at my sweet daughter, my 14 year old daughter, and I know she will have her own story to tell, which will not be like mine (in the time since I first started this post, she has gone to her first youth conference!!).  And I hope I will be able to help her navigate through her own. I hope she will not have to suffer in the same ways I did. I hope she will be confident and will be loved and love when she is more ready. (So far there has been no mention of any boys (fingers crossed).) But I also hope that there was some purpose to what I have gone through. That there is some reason for it all in helping me become who I am.

This is only one little story of me being 14.
It is hard sometimes to think about.
But it takes out some of the sting to tell it out loud.


(me second from left, a couple days before I was hospitalized with the abscessed tonsils. I got very sick very quickly. This is pictured with my siblings and visiting cousins)

"If I don't write to empty my mind,

I go mad."

- Lord Byron

how does your garden grow

The other night I was kneeling in the dirt of our little garden looking at what has come of the seeds we have planted, what has grown and done well, and what has not, pulling out all kinds of very prickly noxious weeds, and weeds that had worked their twisty ways around the stems of my dear little plants. I knelt there weeding and weeding and weeding and and I got to thinking, as I am wont to do. Oh, thinking. My brain. It's a doozy. And I thought about life and summer and the trip I just went on and my kids and the things we've been doing and all of what we've been up to.  (I know it's hopeless to even tell you about the posts I still have in my drafts that I really am still going to finish and post. I really am.) But anyway.  Gardening. Weeding.  Thinking.  And I thought I'd check in here and give you a little update and let you know how things are going, or growing, as the case may be, beginning with our experimental garden plot, and maybe expand on this as little metaphor because metaphors are always fun.  And here I am.

1. So we've lived in our house 11 years and through these years we have had a little plot in which we have sometimes  on and off experimentally gardened.  Nothing has been very successful and it has mostly been discouraging and has mostly grown an amazing amount of weeds.  This year we are trying again. We bought some manure and peat moss and turned the soil and even designed and installed a watering system (which we determined to be our main failure in the past. Turns out things don't grow so well without water. Hm.)  We bought seeds.  We started some seeds from little seed starter peat pots indoors.  And eventually (later in the year) we bought a few tomato plants and a red pepper plant. The younger kids also brought home some carrot seedlings they had started in yogurt cups at school.  So, at this point, our watering system has failed - our sprinkler system turned out to have main water valve leaks that Zac has tried to fix at least 3 times and it is still leaking and so the branch leading the garden and back yard are still not functioning.  And yeah, it's over 100 degrees and our backyard is not being watered.  If you're not from Utah or the West you may not understand the significance of this. Oh well. We are watering the garden from the hose but we are more committed to keeping things alive and I think it is working.  We have some tomatoes starting to grow. Some lettuce. Some peas look good. One carrot from the kids school seeds. Of my little herb garden that I started from seeds, only basil looks like it will grow into something that can be harvested.  I am disappointed not to have any dill or chives but not much can be done. Of the seedlings we started indoors, marigolds were the only ones to make it after we transplanted outdoors.  We have some green bean plants growing (haven't seen any fruit yet) and some zucchini or yellow squash (not sure which).  The pepper plant died and we don't know why.  We are learning through trial and error.  Probably mostly though error. We don't really know what we're doing. Just hoping to enjoy some of our harvest.

(all below photos taken in Humboldt, CA)

2. My trip: I went to CA for my oldest sister's wedding.  I drove 2 days there with my mom and her new husband and my niece/sister and her husband and we stayed there 3 days in a rental house with the 5 of us plus my brother, his wife and their 2 yr old and my youngest sister, then drove 2 days home again.  We spent time with my sister, her son, her fiance, and his 2 daughters, plus the best man, another friend, my sister's fiance's parents. Did I forget anyone?  There were a lot of people, which meant they were surrounded by a lot of love and support which is wonderful, but for an introvert like me who needs a little time alone to recharge, and a person like me with chronic pain who needs daily naps to kind of function in a normal fashion, all the busy running around kind of drained me in a significant way.  I mention this to try to explain to myself why this trip felt so difficult to me in some ways.  Family.  We grow up together.  Are we like a garden? We are seeds somehow sown together, we think we are getting the same experience of sun and water and soil and yet each of experiences it all so differently.  This is something that always seems to come up when I am together with my siblings.  We experienced our childhoods so differently.  We remember even the exact same things so differently.  We experienced our parents differently.  It is hard sometimes to come to terms with the differences of our experiences.  Our memories.  Our childhoods.  And even now. We continue to experience things so differently.  It is hard sometimes to respect and come to terms with the differences of our experiences.  We are in the same garden but experiencing differing shade and sun and water. Sometimes we forget that it's not the same. And not all of us are flourishing in the same way.  Anyway.  I'll just quickly also bring up the issue of being an adult when your parents divorce and remarry. I must have been naive or maybe I just didn't want to think about it - but I didn't think this would affect me as much being older.  I was 21 when my parents got divorced.  And I will just tell you that I was wrong. And if you are one of the people who somehow think or thought the same, I just want to disprove that myth for you once and for all.  And I just have to say that having your parents remarry at any age is still hard.  There just is no way around it.  There were weeds I found on this trip cropping up in my mind that I didn't even know existed.  Not the "bad thought" weeds that we're typically taught to weed out of our minds in that sense, but just things growing in the back of my mind, thorny prickly uncomfortable feelings that needed to be dealt with. Painful thoughts that had to be grabbed with both hands and yanked on and brought to the surface and untangled, even though they dug into my palms and left me scraped and bloody.  I came home from the trip having accidentally unearthed some prickly thorny weeds and it wasn't necessarily any one's fault or any particular incidences or anything. It was just the circumstance of what is and that I need to deal with my weeds. It was a wonderful trip, all things considered. It is so beautiful there and I love it.  The wedding day was beautiful and I loved it. I love my family and I loved spending time with them.  Gardening is just such hard work.  We work at it the best we can and sometimes we aren't so good at it.



3. Summertime and my kids: we started a new chore system and it seems to be going well. The kids are actually doing chores!!  Hooray! This is going well for the most part because I am doing well enough to enforce it - ta da! Magic! ;)  And Zac and I are both actually amazed at how well it is going.  It took a couple weeks to get some of the complaining to stop and to not have to drag certain children from step to step but after 4 weeks, it seems to be going somewhat smoothly. They have a room for the week to clean and maintain everyday and then "deep clean" once a week and we have incorporated doing the laundry and some extra things into the basic rooms. They have a printed list of what they are expected to do every day.  I help Samuel and Elisabeth as needed.  That's basically it.  They seem to be proud of their work, happier throughout the day, they keep things cleaner because they take some ownership in it. Ahh finally seeing some growth in this little garden!!  We are also taking steps to limit screen time and that seems to be helping the overall tone in our home.  Other than that, we've made our list of "fun things to do" and we're trying to do them.  Except Elisabeth wants to do things like "make hats" and I'm really like, really? do we have to make hats?! I'm not crafty and I don't really want to sit and make hats but there it is, sitting, staring at me on the fun list, wanting to be done. Crap.  So yeah.  There's things like that.  I'm more into the "make homemade ice cream" - lots of it.  Let's make lots of homemade ice cream, and popsicles, and smoothies, and cookies .... and forget all about counting calories .... ever . . . again.  Ugh.  It's too hot here.
We are also doing lots of pooltime and hopefully growing lots of great family memories. Summertime...

4. Finally, because I haven't updated in a long time, I'll just give a quick pain update.  It's still there. The beastly trigeminal neuralgia and chronic migraine. I added another medication that is supposed to be helping the migraines and could also combine to work with my other med to help my TN. I started in April and have been increasing the dose. April I had 17 migraine days.  May I had 14. June I had 10.  So you could say perhaps it's working. It could be coincidence. It could be any number of factors.  You could say any way you look at it, 10 migraine days in a month is still an awful dang lot of migraines!!!  I was disappointed when I counted it up because it felt like it had been such a better month for me.  hahaha.  That's still an awful lot of days.  And then I still have the daily TN pain.  But I'd have to say that pain is mostly down a notch.  So instead of generally being at a 6-7 on a 1-10 scale, it is mostly at around a 5-ish most of the time.  And I have some small hours at a time when I am almost without pain, which is glorious.  I have been able to exercise, or I am able to force myself to exercise most of the time, which I am grateful for - and I have been counting calories, which is miserable.  But it is a necessary evil, because I hate the weight I gained on the meds and being bedridden that first year and a half with the severe pain. It is/was a definite contributor to my depression.  I never know if or when I may be at that point again so I need to do all I can to become more physically healthy while I can or whenever I can.  It's been hard but worth it to see even small results.  So my pain is a little bit better.  Mostly now I get the ache  and stinging pain across my cheekbone, occasionally aching in my upper jaw, occasional aching and shooting pain in ear, pain around eye and in eye, tingling along tip of tongue, feeling like someone is pinching my ear - then the migraine either in my left eye and left side of forehead and head, or on my right side of head (I know that's
weird).  So that's the strange garden of my brain (these messed up neurons).  Just leave it alone - only the professionals can tell what's growing in there (metaphorically).



And there you have it.  Lots of growth and weeding and watering and fertilizing and nourishing and waiting and watching and hopefully harvesting.  All of it.  That's what life is, right?  Gardening. :)

yesterday was a good day



I know I post a lot of doom and gloom around here.  Things are just . . . hard.  And it just happens that some of that spills out into here, as I am prone to share just about anything and everything, as long as I feel well enough to do it.  haha.

 

But - yesterday was a good day.

 

And just what constitutes a good day in my life these days?!  Let me tell you.;)

 

1. I woke up to find that my profile was featured on an Instagram group called NothingIsOrdinary.  They do a Meet New Friends Wednesday and if you post a self portrait with an introduction they might choose you to feature.  And they picked mine as one of them! So, throughout the day I had dozens of nice people liking my photos and leaving sweet comments and encouragement and introducing themselves to me.  Silly to say, perhaps, but it completely made my day. 

 

 

2. I scored these impressionist painting prints (from the National Museum of Art) from an online yardsale site.  That painting on the left is Child in a Straw Hat by Mary Cassett and is my very favorite painting.  So I am very very happy about that.

 

3. The date of my high school reunion was confirmed so I can start looking at plane tickets to fly back to my beloved VA this summer.  Kind of excited about seeing some of my friends again that I've known since kindergarten (they better be there!!!). :)  And, despite the crazy awful traffic and oppressive summer humidity, I always love and crave a chance to be back in my homeland.  It's still home.

 4.  I stayed awake all day long.  That never happens.  I usually start to lag around 11 am and am struggling to stay awake at least by 1.  I nap every day.  But yesterday, although I did rest in bed for awhile, I didn't sleep!!  It was kind of amazing.

5. It was the First Day of Spring and I made lemon bread to celebrate.  It is sooo good.  I've also started counting my calories these last couple weeks and it was absolute torture to realize how many calories are in this stuff and to tryyyy to have self control.  That was hard.  But I managed to make my cake and eat it too, or stay within my goal anyway. Phew, that was difficult!!

(I will try to post the recipe for this for a few of my facebook friends who have asked for it.  Really, I will try).

6. Speaking of which, I have also started making myself exercise (which I also did yesterday).  In fact I did my very own zumba routine at home.  I can mostly remember the routines, and I've collected a nice bit of a zumba playlist, so that was kind of fun.  Exercising hurts me.  Hurts my face, esp my eye. Sometimes my head.  It's not easy.  But I'm just making myself do it.  My muscles just need it, plain and simple (and this past year of meds and fatigue and pain and not moving have just not been kind to me, at all).  Ugh. 

7. The pain was bearable yesterday, which made everything else better.  Or vice versa.  Who knows. It is almost impossible for me to tell if medications are working or not. I've been stable on a dose for a while and the pain still kind of flares up worse sometimes than others.  I have a neurology appt next week so we'll see what the next step is.  But for a lot of the time this week, the pain has been at a tolerable level.  Hurting all the time, but lower level or with stabs and stings that come and go.  It's so hard to explain.  No migraine yesterday either.  That's always a plus, since I am averaging about 18 migraine-pain days a month.  Sheesh.

 

But there is a little bit about my good day.

Along with random photos I've taken and posted on Instagram.

Hope you enjoyed it.

:)

 

anniversary brain dump

otherwise entitled: Welcome to my Brain

or, otherwise known as: Brain, Sometimes I Hate You.

This month marks the One Year Anniversary since this crazy pain started. This is the month I went to my Dr, thinking for sure that since my ear had been hurting for a few weeks, I might have an ear infection. But then he treated me for an ear infection, and my ear still hurt, radiating down into my jaw and in my teeth. And thus began this fun journey of Dr after Dr: dentist, ENT, ENT nerve specialist, neurologist, neurosurgeon, pain management specialist, etc. But I'm getting ahead of myself. At first it was just the Dr, dentist, and ENT. And then after 2 months of ear/jaw/tooth pain, it seemed to go away. Then 2 months later, it was back again, along with the face pain that has now been my constant companion for 8 months. Pain in my ear, cheek, around my eye, along my nose, along my jaw and in my teeth. Every single stinkin' day for 8 months now.

I don't need to rehash the entire story. The point is just that I am sitting here at the ONE YEAR mark and I am just not happy about it. In fact . . . well, in fact I am struggling quite a bit. So I guess I thought I'd just dump some of my thoughts out on you. haha. This will just be totally random, unorganized babbling. I hope you'll read it anyway. {and the side notes in brackets are some of the intruding thoughts that try to fight through the muck, but aren't very successful. I usually just feel worse.}

I have read/heard a lot about how we need to control our thoughts, and the thoughts behind our pain bring us more pain than the pain itself, and we need to let go of negative thoughts, and turn them around, reframe, etc etc etc. Just look at Pinterest and you will find about a million positive thinking quotes, all done up with pretty fonts and pretty colors and pretty backgrounds. And it's all well and good. It is right. I don't disagree. But really, when your thoughts are coming at you like an avalanche, or a rock slide, or more accurately, a mudslide . . . I don't know how to stop them all, or look at the positive, or change them all into pretty helium balloons and watch them float away.

{and then I hear that I should change all my metaphors to be able to see things differently} yes, yes, I know.

The hardest thing is that I am fairly certain that this pain is not going to go away. It is more probable that it will get worse as time goes on, or as I age. Medications are iffy. The one I'm on now has taken me from absolute constant 24/7 pain, to pain that comes and goes, but is still present, coming and going, many many times through each hour throughout the day. And the side effects from that med have been getting worse, I think. They are pretty awful in and of themselves. I don't know if I will ever reach a state of 100% relief. And that is hard to come to terms with. I am physically tired, mentally worn down, and emotionally frayed. {realistic or pessimistic?}

I've also been diagnosed with migraines, as a separate issue from the trigeminal neuralgia pain. I'm experimenting with abortive medications for those. Since I've been tracking it, I've gotten them about 4-5 a month. And then just regular old headaches frequently too. I haven't been tracking that pain. My neurologist has me keeping a pain log, 3 times a day, rating my pain (but only the trigeminal neuralgia). I've been doing it since Feb. And I'm sort of tired of it. Really tired of it. Sick of it. But they want to see how my pain levels change with new meds etc, so I know it makes sense to do it. I just don't want to.

My children need a better mother. I know this just sounds like the trite exclamation of an exhausted depressed mom. But, seriously. This summer has felt more disastrous than much of anything else. My kids are a little out of control. And I cannot do much about it. And then I am filled with the guilt of thinking, if I had taught them better before now, before I came down with the pain issues, then things would be better now. But I have failed. And what will the coming years be like, will they hate me for being the mom that is always sick in bed? {one day at a time . . . see how my trying to see into the future makes me feel worse?}

{and have we mentioned the "what you dwell on is what you get more of" philosophy . .. or that we have brought everything into our life by our own choices, our thoughts, our intentions? So, I've done this to myself. Is that right? Is that what you're trying to tell me?}

A year ago, I was doing a mini-triathlon. I felt strong and healthy. I was so proud of myself for doing that. Perhaps more proud than I should have been. In December as I was thinking of New Year's Resolutions, or things I wanted to do this year, I was planning to do another mini-triathlon and maybe a mud-obstacle race. Then I was hit with pain that got worse with activity, medications that made me so slow and sluggish and sleepy I could barely get out of bed at all, and worsened depression from both the pain and the meds that just made everything feel impossible. Not surprisingly, I have gained weight. My clothes don't fit. I feel discouraged everytime I get dressed. I can't bring myself to consider buying clothes in an even bigger size than I have ever worn in my life. I know I need to diet to even maintain, but I just don't have the self-control when I am depressed and in pain. I hate all of this. I hate it passionately. And it just does not have the simple fix that it used to (eat less and exercise more - not that it's ever simple anyhow). I just don't have it in me. When I compare where I was a year ago to where I am now, it is almost unbearable. {but I know I need to accept my life for what it is now, today. acceptance. Oh boy.}

I have made myself exercise. I miss going to Zumba and have tried to go, even though it hurts a lot. I even went to another class - some mix of aerobic kickboxing or something. But there were only about 5 of us there and the teacher, although a fantastic teacher, was trying to push us with the pep talks "you can do better than that, c'mon you gotta push yourself, you decide how many calories you burn by how hard you work!!!!" and I imagined her eyes were settled on me as I just tried to do what I could, which wasn't much. She didn't know. I guess I could have told her. {I am probably just self-conscious and shouldn't care so much about what I imagine other people are thinking, which they probably aren't even thinking.} Oh well. I kind of hated it.

It is hard for me to be around people. It's hard if they ask how I am and I'm not sure if they really want to hear (again) that I'm not really doing too great. I'm not sure if I should lie (just a little) and say I'm fine. It's hard if they don't ask at all because then I feel like they don't care. It's hard to be around all the happy shining people who have no idea what it's like to be hurting all the time. It's hard to stay home because I don't have the energy to go out and about and deal with the inevitable lights and noise etc that are anywhere and everywhere.

Really. I can't believe I'm saying these things. Thinking them is bad enough.

And have I mentioned how talking and smiling make the pain worse? Um. Yeah. Sometimes as much as I want to talk and smile, I just don't want to put myself through it. So sometimes I may steer clear of people because chances are I just might talk and/or smile. Either that or break into tears without warning. So you see how this becomes problematic, don't you?

And then there comes the whole, "I wouldn't be given this if I weren't strong enough to handle it" or I must be learning something from this, or somethingsomethingsomething. I don't even know what to do with that sometimes. I'm not sure what "handling it" means. I'm still alive? I get out of bed? I've survived another day? Sometimes I just think, is this really a good thing? What good am I doing here?!? {and then I know, I mean a lot, more than anyone can ever express, to my husband, my kids, my extended family . . . I know. But . . . sigh. But. who am I here for? me? them? what role do I fulfill, really, right now? I'm not sure.}

Anyway. This blog post has been really long. And I've started it, set it aside, added to it, closed it several times throughout the day. I don't know what the point is, really. And what I want from it. I don't know. Do I need help? yes, sometimes. Do I want sympathy? yes, sometimes. Do I need someone to listen? yes, definitely. Do I miss my old days of happy skipping frolicking blogging? yes, more than you know. I miss a lot of things. I am grieving for a year that feels lost. And feeling frightened and panicked and unstable at the prospect of who knows how many years to come, more like this. {again, I just need to take one day at a time. One moment. I know. But I am a thinker and a planner and I am more than overwhelmed with these thoughts.}

Part of me feels sorry for dumping this on you. There is nothing really any of you can do. So perhaps I have burdened you unnecessarily with my pain. I hope that I can trust you not to be harsh with me for doing so. I hope that perhaps by scattering these thoughts out to you, you can help diffuse the pain and help carry the burden just by knowing. Just know and understand that sometimes some thing might trigger one of these thoughts, and then that "pang of sadness" becomes like "the engine of a train, pulling all the other sadnesses after it" (paraphrased from Belong to Me, by Marisa de los Santos). I will try, in time, to help my brain keep one thing at a time and keep the mudslide at bay. I will try. Then the negative thoughts will be like balloons, I can hold in my hand, and accept and appreciate, and let go.

clarification

on that last post

the title

and the first 3 lines

were the entire content of the post of 4 years ago that sat in my drafts

and which I decided to go ahead and finally post

the rest of the post

was an introduction to Mental Health Awareness month

and the future posts I will be writing

beginning with a review of the book

coming soon

!!!

:)

stigma, depression, mental health, misunderstanding, medications, and how to deal with it all

yeah.
someday I might talk about that.
but not today.

------------------------------------------------------------

This post has been sitting in my post draft box since 2008. Yes. For 4 years. 4 Years. And I have not had the courage to even post this. Crazy, isn't it?

May is Mental Health Awareness Month.

So I'm just going to go ahead and finally post it. Now. Today.

I've been following a Talk Out movement with the goal of reducing the stigma of mental illness by letting people know it's ok to talk about it. So, here we go! We're gonna talk about it on my blog this month. WATCH OUT!! hahaha.;)

It's good though too, because it will give me something else to talk about besides my constant pain (oooh, goodie!).

Coming up first will be a review of the book Thirteen Reasons Why by Jay Asher that I read a little while ago and have not been able to get out of my head. Really good book. If you have a chance to grab the book, it's Young Adult Fiction, really quick read, then we can discuss it together. If not, I'll discuss it anyway.;)

I'll try to keep catching up on a lot of other blog postings as well (so much to post!! ahhh!). I just feel like now might be a good time to "talk out" on some of this other stuff mulling around in my brain. Don't you agree?!

Ok. Hold on tight, folks. This could be quite the ride! Wheeee!!!!

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.:)

sitting

“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?

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.

what I need

ok. So perhaps I have been too public about all this nerve pain stuff. It is true I am not one to hide my feelings. I will not say I am ok when I am not (generally - although I will laugh compulsively even when I'm not very happy. Nervous habit). Truth be told, I've been struggling. Quite a bit. I am not one that deals very well with constant pain, apparently. I am not good at "bucking up" and "being strong" or whatever you want to call it. I guess maybe I'm a wimp. I can probably admit to that. At any rate, I saw the neurologist yesterday and I will write soon about what I do and do not know from that visit. But I'm going to write this post first.

I've had a few people ask to let them know if I need anything. The problem is, I feel like I need so much it goes beyond what anyone can do to help. And I have angry, judgmental, sarcastic voices in my head telling me that what I need doesn't matter anyway. There are even some that try to convince me that what I think I need, isn't what I really need. Sometimes I hate my brain.

[Well and I just wrote 2 more entire paragraphs that have now mysteriously disappeared. So. Maybe that's my clue that I shouldn't post what I had written. ugh. hm.]

So anyway. I guess what I really need is to accept the reality of what is. I need more strength and energy and motivation to do things even when I don't think I can. I need to know that I matter somehow, even if all I can do is get through the day spending most of the day in bed. I need caring and supportive people around me who won't tire of continually expressing their caring and support (haha - yes, that's you, my faithful friends). And more than anything, I guess I just need to know I, and my family, can get through this. Even if everyday hurts, even if it never goes away or gets better. That's what I've been struggling with the most. And what no one can help me with.

But thank you for your offers to help. It helps to know you care.

(and ps - yes, I am a believer in faith and prayer. But . . . it's still hard. That's all.)

And a final quote (relating mostly to emotional pain, but applicable to more, I think. And I have actually felt a bit of both lately, so it seems to apply):

"Many of us spend our whole lives running from feeling with the mistaken belief that you cannot bear the pain.

But you have already borne the pain.

What you have not done is feel all you are beyond the pain."

- Bartholemew

the good news is . . .

Look! I have a brain!

Proof even, in case there was ever any doubt. ;)

(no comments on the funny shape of my head or anything, please. I just think it's sorta cool to have a picture of my brain. It's normal, I promise. Or so they tell me. Or at least I think that's what they said. Mostly. haha.)

Anyway.
The bad news is there is something going on in there that is causing me trigeminal nerve pain and I am not completely sure what it is. As far as I know right now, it could be some kind of small tumor, or it could just be neuritis, which is inflammation of the nerve.

I spent Mon and Tues in the most frustrating process of getting the MRI results that I could have ever even imagined. Ugh. And the Dr is now retired. ugh ugh ugh. I can't even think about it all right now, but I might write about the whole experience sometime soon. Just to vent.

I hope to have more definitive answers very soon.
Just thought I'd give the short version update.

So, I've mostly been a wreck this week. I'm finding it hard to concentrate on much of anything (even reading! ack), or do much of anything, or anything really. The combination of the constant pain, the many frustrations, this new medication he gave me to try causing excessive sleepiness, the worrying about what's really going on . . . well, it just hasn't been a good week at all.

And that's all.

MRI playlist

well . . . what to listen to and think about when you know you're going to be confined in a tight tube and can't move or open your eyes for possibly as long as an hour?!?

hmmm . . . I'll let you know what I come up with.

(yes, going in for an MRI for my headaches/ear/eye pain tomorrow morning. Hoping to find some answers. They told me I could bring music. They're also giving me Valium. That could be interesting . . .)

more later . . .

the back side of the moon

Well, you know how when the astronauts orbit the moon in the movies, they start coming around the back side of the moon and they count down as they are about to lose communication with earth. And then the command central waits for the amount of time that the orbit should take until they come back into signal range and communication is restored.

I am orbiting around the back side of the moon.

For those that don't already know, I have temporarily deactivated my facebook account and most probably permanently deleted my twitter account (haven't decided yet). I am coming around onto the far side. Maybe just to see what it's like over there. Maybe just for some quiet. Maybe just to see if I can. Maybe because it is something I really need to do. My reasons are varied and deep and personal.

I have no doubt that I will come out on the other side and "reestablish communication." The signal will pick back up. I'll be back on Facebook. I'm not sure when though (to quote Eyeore, "days, weeks, months, who knows"). I need the time and space and distance to feel comfortable in my own silence again. I don't know how long that will take. And I deactivated it just to make it harder for myself to get back on (because I know I have no self-control) and I wanted it to be completely clear to anyone else trying to find me or get in touch with me that FB isn't going to work for awhile.

I am just hoping there are still people who read this blog without waiting for the posts on FB. I hope. But I guess it doesn't really matter. I will still be blogging . . . for whoever reads it.

So. No need to worry. I trust FB and everything I really do love about it (because I really do love it) will still be there when I come back. I just need to trust in my own ability to navigate this orbit without any feedback or FB news feeds.;) I need to learn to trust myself.

(And I know there is no need for me to feel like I should explain myself, really, but it felt like a big and drastic step to me, for whatever reason, so I wanted to offer at least something to those who may wonder why.)

ok, enough of that.

Keep in touch! Comments here, email, phone calls, old fashioned snail mail, iphone texting, knocks on my front door . . . there are still lots of ways to contact me, so no excuses!;)
Catch ya on the flip side FB friends!

ouch

ok, so I don't technically know if what I'm experiencing is migraines. But man. That illustration is a pretty accurate description of what it feels like. Especially behind my one eye. And it hurts even more when I move, so I try to lie very still in bed when it strikes. And sometimes it seems to come and go for days and days. Which means I spend a lot of time in bed, for days. Which means I then feel guilty for all the time I am spending in bed. Which, argh, just isn't very much fun all around. I don't even feel like writing in complete sentences (gee, can you tell?). I don't feel like blogging. Or doing much of anything, really. But I'm considering going to see a Dr, perhaps. I'm debating it. I'm also still getting that crazy nerve pain in my left ear, which the ENT thought was most possibly Trigeminal Neuralgia, but I never did really figure that out. It comes and goes but hasn't "worsened" per se, so I have mostly just tried to ignore it as much as I can. But sometimes, I have the awful one-sided headache, plus the eye pain, plus the ear pain. And I pretty much want to curl up and die. Well, not really. But sort of.
So.
That's me right now.
Off and on for the last week or so.

Someday I really will catch up my Christmas posts and all the end of year summations and all of that. I promise. I just need to not be experiencing this monster headache in order to do that. Ugh.

Any advice on headaches, with eye pain in particular? Anyone? Or anyone have some really good jokes or stories or something to distract me from the pain? Anyone out there at all? hello?! haha. ok.
love to you all. Thanks for listening to me moan and groan and complain.