at the edges where things fall apart

when life starts to feel like there is nothing beautiful to see
I step closer
I look down
I find myself kneeling on my cold sidewalk in 16 degrees taking pictures without gloves on
and feel like, yes,
ok
I can find beauty
here
in the edges
where the snow and ice begins
to rot
leaving spaces and openings
where it used to feel solid,
where it is fragile and uncertain,
where whatever there was unresolved underneath peeks through again
and begs to be looked at.
I will sit and look.
It can be beautiful here.
It's beautiful when I look
close enough
even though it's all falling apart.

hey why don't you start all over and do it all again?

Here is a somewhat oversimplified list of how my Dr visits have gone since my pain started, highlighting the most frustrating incident of the process (that took place over a year's time) .  Just for your enjoyment.;)

Dentist - go see --->

General Practioner --->

Ear, Nose Throat Dr --->

Ear, Nose, Throat Nerve Specialist --->

Neurologist --->

Neurosurgeon --->

Pain Management Specialist ---> why don't you go see your dentist . . . . . .


. . . my thoughts: um, you're joking right?!?

This is Fun

Here is another example of the great fun that is my life:

So, as most of you know, I have dealt with depression for a long time.  "Officially" (with diagnosis) for about 10 yrs, unofficially for much much longer.  I know from many years experience that, for me personally, medication is the most effective treatment for my depression.  It allows me to feel normal, most of the time (I really don't want to start a conversation on the most appropriate treatment for depression - just hear me out and listen to me vent).

The interesting thing (from what I've read) is that the centers in the brain that deal with emotional pain (depression) also deal with physical pain, so much so that one can trigger or aggravate the other and they can play this nice game of circling round each other and blaming each other and chasing each other's tails.  You know those Cymbalta commercials, "Depression Hurts"?  That's because depression can actually cause physical pain (but according to my Drs, this is usually a diffuse or vague pain, achiness etc - NOT usually a distinct pain pattern along a nerve route that fits a specific disorder, such as my trigeminal neuragia. Just in case you were wondering.;).  The flip side is, of course, that physical pain can cause, or aggravate, depression.  Not only do you have the obvious loss of meaningful and pleasurable activities, and adjusting to a new kind of life, and fear of what the future holds, guilt for not being able to do as much, fatigue and other fun side effects from meds, etc etc etc - but biologically, the center that lights up and says "holy crap our body hurts!" also flips the nearby switch that says "oh crap now we're dealing with depression too."  And then feeling depressed also makes it so much harder to cope and deal with the pain.  The perception of pain is intricately subjective and entirely individual. You could subject 2 people to the exact same pain and they would perceive it, and feel it completely differently.  And how we "feel" plays into how we feel.  Things really do hurt more when we feel vulnerable, alone, discouraged, and hopeless.

So then, here we are.  As the pain continued for months and months . . . and months, I began to notice that my meds for depression just didn't seem to be cutting it, even though I'd been feeling rather stable and well for a couple yrs before this developed.  And frankly, I needed to be feeling a bit uh, perkier to even begin to feel like I could cope with the stress of constant Dr appts and tests and the normal life of 4 kids while being in pain all the freaking time.  So I saw my Dr and we increased my dose.  So far so good.  Not sure it helped a lot, but I still held a lot of hope for finding a solution soon to the pain. 

Then more time went on and I continued to feel like, oh my goodness I could deal with this constant pain-that-may-never-go-away perhaps just a little better if I weren't already depressed.  And now my Dr tells me that we just need to wait and get my pain under control and that will help my depression.  He won't increase my dose.  Yet.  And so I'm stuck in another circle.  Feel like I can't cope very well with the pain on top of depression, can't get help for the depression until the pain is well controlled.  The meds for the pain take a really long time to even begin to help, in the meantime I have nothing to help me deal with it.  Not dealing well with it makes it hurt even more.  Hurting physically makes me feel even worse.  Feeling worse makes me hurt more physically.  Umm . . .

Really?!?!

This.

So, my neuro put me on a new anticonvulsant awhile back. But I had to titrate up on the dose and it would take about 6 wks to be up to a dose that would even begin to be effective (if it even worked at all). So, in the meantime I was having a really hard time coping with the pain. I felt like I needed something else to try to at least alleviate it a little so I could endure. Sometimes I feel like I'm begging to be flown to the moon....

I called my neuro hoping she could help me. My next appt with her wasn't for 2 months.

Medical assistant calls back to tell me:

"Sorry she won't prescribe anything for pain. You just have to be patient and wait for the anticonvulsant to start working. It will take awhile for it to work. You'll need to see another Dr if you want something for pain management."

So, after a few calls to my regular Dr and trying to find something to help with the pain, I get a call back from my Drs nurse:

"He's not going to keep prescribing pain medication for you. You need to see the neurologist who is treating you for this condition to get help for your pain since she is the one treating it."


Seriously.
This is my life.

just back into the normal routine

So the kids went back to school yesterday post-Christmas break.  I know I haven't even written about the joys that were our holiday break celebrations, but I will now present to you what these last 2 days of getting back into the "normal routine" have been.

Yesterday, first day back:

First Abigail's alarm didn't go off in the morning as she expected so she was just a bundle of cheerfulness, as you can imagine.  Then Samuel couldn't find his shoes.  Like no shoes, anywhere. There were lots of tears and screaming and crying about the loss of said shoes (I may have joined in with some yelling). How could we not have any shoes?!?  Isaac joined the search, I searched.  No shoes.  I texted Zac who told me to look in the car.  Why his shoes would have been left in the car when they normally would have joined his feet into the house, I have no idea, but lo and behold, there were the shoes. 

Then I got the younger 3 kids to school and drove back to find that Abigail's middle school bus had not arrived.  It was about 15 min late but I told her I was sure it would come soon and I left her standing in the cold at the bus stop.  About 20 min later, there was a knock on my door and there was Abigail and her friend frozen into popsicles telling me school already started about 5-10 min. ago and the bus had still not arrived and begging me to drive them.  So I did.  Wearing my polka-dot pajamas that Samuel gave me for Christmas.  Based on the line of about 20 cars dropping off kids (15 min after school started), it looked like we weren't the only ones that had waited for the bus-that-never-came (apparently they had some issues with buses not being able to start - nice).

In the afternoon, I picked up Elisabeth to take her to her gymnastics lesson.  She was showing me her very slightly wiggly front tooth and was convinced that it was coming out - today!! She wanted me to wiggle it and get it out.  It was clearly not ready to come out, but I gave it a good wiggle and we got in the car to go.  As soon as we pulled into the gymnastics parking lot, she wanted me to twist it,  sure that I could get it out.  No dice.  And she was getting mad that I wasn't helping her get this tooth out.  If you don't already know, when this girl gets mad, she gets mad.  She is the kid who still has hour long tantrums if, perhaps, she didn't get to go first in the bathroom.  Ugh.  So we're walking in and I'm trying to diffuse the ticking bomb.  I tell her, hey I wonder what you're going to do in gymnastics today?  What?!? she says.  I say it again. No! She says, that's not what you said before, tell me again!!  (this is a common explosion she has).  We're walking into the locker room where she has about 5 min. to change into her leotard before her class begins.  We don't really have time for a lot of dawdling.  But she's still stuck on this idea that I didn't repeat what I said verbatim and is now in full blown tantrum mode over it and refusing to change her clothes.  I help her out of her clothes, trying to tell her what I said, and then she goes back into the wiggling tooth, etc etc, crying and screaming in the locker room.  And she starts the "I'm not going to gymnastics!" spiel.  Sigh.  So I've manually helped her change all her clothes and I gather up all our stuff and walk out and over to the gym with her trailing behind me, still in tears.  We go in the gym and she's clinging to my legs, still crying. I explain to the teacher that she's "just a little grumpy." And one of the other teachers comes over and peels her off my leg, telling her how good she is at gymnastics, and I leave her in tears.  Wonderful.

The rest of the afternoon and evening, I have a killer migraine that has migrated to both of my eyes and both sides of my head.  One of the worst ever.  I go to bed with a headache, dream about my head hurting, wake up several times in pain and wake up, of course, with my head still hurting.

In the morning, as I am trying to direct everyone getting ready for school and trying not to move very much because me head, face, eye hurt like the dickens, all of a sudden I hear a lot of yelling coming from the kitchen area.  "There's a bird in the house!!!"  "Whaaaaat?!?!"
yeah.
There was bird - from outside - in our house - freaking out and flying around.  Elisabeth was screaming at the top of her lungs.  Isaac was reminding us that we certainly didn't want the bird to poop in our house (so helpful).  Samuel was yelling.  Abigail grabbed her video camera and recorded the whole chaos, along with a whole lot of "oh my goodness!!!"  And about all I could do for several minutes was groan and hold my head.  How were we going to get a bird out of our house.  Turned out that turning off all the lights and opening the back door wide and getting everyone to be quiet, was enough for it to get it's wits together and fly out.  Thank goodness!!!  I'm not sure how it came in, since I missed that part, but I think it must have been in the garage and flew in when someone opened it (it was -6 F outside, guess I can't blame it).

Anyway. After all that excitement, my head was about to explode so I loaded up on good meds and slept the rest of the morning.  In the afternoon when I was going to pick up the kids, I realized that our garage door was frozen.  This happens sometimes.  And someone has to push the garage door opener button while someone else simultaneously pushes the garage door up to get it open.  Well.  There was no one else to help me push the button.  So, after several minutes of panicked texting to Zac, I realized that I could go outside and use the keypad and push that button and be able to reach the garage door and push it up at the same time.  So I went outside.  But I slipped on our snowy and icy back steps and slipped all the way down, falling on my back and landing in the snow at the bottom.  Yes, I screamed and laid for awhile in the snow crying.  It just wasn't really what I needed.  You know?

But I got the door opened.  Picked up the kids. I think my coat had provided a good cushion protecting my back from serious injury.  But still. I went back to bed afterwards to nurse a killer migraine, face pain, and a nice sore back to top it all off.

Just getting back into the normal swing of things...
No big deal.

(oh and Elisabeth has just come into my room as I write this telling me that her tooth is definitely ready to come out now.  Seriously....)