oh hi blog

just curious - is there anyone reading this who isn't on my facebook or twitter?

well, just in case there is here is the update:

I am not well. Still lots of pain.

Well, sometimes I am almost well. I can appear very well. But then I almost always regret it (by having more pain) later. That really stinks.

Not much more to say, really.
I'm trying to get in with a new neurologist.

I just can't seem to get a good grasp on things. Today was particularly hard.

Things are busy. Soccer, piano, violin, running club, scouts, Nutcracker rehearsals, homework. I count myself doing pretty well just getting the kids where they need to be each day. Then I have my appointments for me and/or the kids - it seems to average about 2 a week, taking about 3 hrs out of my day each time. I have to nap every afternoon.
And that's about the sum of my life.

But, really, in reality it's not enough. Those things alone are not enough to build and maintain a successful household and family. It feels like things are just crumbling away beneath my feet.

Anyway. Ohh . . . sigh.

Let me end with one good thing: I had dinner last night with a very good friend whom I haven't seen much of for a few years (?). It was nice to be able to talk to without censure, and feel compassion and caring, listening, understanding from her. I hope I was able to offer the same in return. I really really needed that.

Cheers, friends . . .
I know I'm a scarce presence around these parts lately but . . . you're always on my mind {cue music} . . . ;)

("maybe I didn't love you . . . quite as often as I should . . . .. . . ")

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.

Important Correction for: Help Matt & Tricia Adopt!

Ack! Regretfully, I posted the website for their adoption page wrong!

It is actually:
www.matthewandtricia.com

I hope you will all still consider giving!

help Matt & Tricia adopt!

Tricia is the daughter of my dad's ex-wife. I met her when we went out to visit my dad and we then became more connected through our blogs and facebook (you know, the usual). :) And although I only met her in person a couple times, for not very long, I consider her a friend and I know her to be a wonderful, sincere, and loving person. She and husband are working very hard to fundraise to be able to adopt a baby and I admire them so much for all these efforts. They deserve this more than anything.

You can help them! If you want to do something good in the world today, consider contributing even a small amount directly to their fundraising account on their website. Or there are other merchants you can buy from and a portion will go to Matt and Tricia.

(and AN EXTRA BONUS - until tomorrow, you can be entered to win a raffle for an ipod or itunes gift cards just by sharing this! Spread the word!)

Go to www.mattandtricia.com to check it out!

Thanks:)

well . . .

I seem to be struggling with some writer's/blogger's block with these trip posts. Everytime I think about doing it, I just feel . . . stuck. Lots of pictures, from multiple devices, and I can't seem to think of how to organize them all to present in blog posts. I don't know what my deal is. I think I will tackle it eventually. Just please be patient. :)

One thing I can answer is how my pain was during the trip. Hm. Zac drove the entire way, thankfully. So I could sleep and take my drugs as needed. The ends of the day were the hardest for me. Pain levels the highest, kids getting cranky, Zac getting drowsy. Good times all around I guess. We drove about 12 hrs each day (3 days there, 3 days back) so it was just long. At the beach, as expected, the sun and heat exacerbated my pain. I had to lay down each afternoon to nap, which put a damper on how much we could do (Zac couldn't manage the kids by himself with too many crazy things. Neither could I, for that matter.) So, sometimes I felt bad about that (putting a damper on things). I think the kids were content to sit around the condo and watch the Disney channel (something we don't have at home), but of course I felt guilty because we did not drive all the way across the country to sit and watch more TV. Ugh. Oh well. We did the best we could. And we had a lot of fun, all things considered, I think.

I am grateful that my medication was helping somewhat, and reducing my pain to manageable levels for a lot of the time. Without that, I don't know how I would have survived.

And it was so great to be with all Zac's siblings and parents and nieces and nephews (excluding his brother in Alaska and his family, unfortunately). I think everyone was remarkably patient and considerate of each other and it made everything wonderful to be there as a group.:)

So! If anyone has anything to help motivate me to blog more about the trip, send it my way!! I want to do it.
I do.

let's start at the very beginning

This recent trip reminded me of my first visit to Ocean City, NJ in May 1994 with Zac. Ohh, this guy. What would I do without him.
Here he is this time:

And here we were then:I visited him there, his hometown where he lived from the time he was 11, before he left for his 2 yr missionary service. So this visit I felt a lot of nostalgia, mixed in with remembering having to say goodbye to him. Boy oh boy! Emotions!

And then in 1997, after I had returned from my mission, we again went to the boardwalk when I came up to see him. The very first night I saw him again (after 3 yrs of only writing letters), we rode on the big ferris wheel. I think he held my hand.

So Ocean City holds a lot of significance for me. It was his hometown. But it was the place I said goodbye to him, not knowing what the future held for us. And then hello again, and figuring out what our future was going to be. Crazy stuff!!

We hadn't been back there since his parents moved to Indiana in 2001 (?) and we moved back to Utah. It's been a long time! And we hadn't seen his sister and her family either who still live in NJ, so it was a trip long overdue.

His family had decided to arrange a sort of family reunion there with his parents and all his siblings gathering there. It took over a year in planning, reserving the condos, making the required payments in advance etc, so it was kind of a big deal. One brother and his family moved to Alaska mid-planning and decided they couldn't make it. But his other 2 brothers, their families, us, his parents and his sister and family ended up sharing the 2 condos. It was quite the adventure!

Beginning, of course, with our road trip. Are you ready for this?!? haha . . . here it comes! :)

oh hello again

This is where we've been. :) We went on what the kids referred to as "the vacation of our lives." Meeting up with most of Zac's family in his hometown of Ocean City, NJ. We shared 2 next-door neighbor beach condos. I have a lot of posts to come! Oh boy.

Zac didn't want me to post anything about us leaving (either here or Fb, etc) so that I wouldn't "announce to the whole world" that our house would be vacant and available to rob or plunder. I'm not sure that we really have anything of interest to any potential thieves, but I guess I see his point so I tried really hard to comply (it was so hard!!!). But anyway - we are home now after 2 crazy weeks (3 days driving there, a week there, and 3 days driving home). The good thing about driving is that there isn't much vacation blues afterward - after 3 days in the car, you are just so glad to be home again!! Our own beds! Our own toilets! No more crying and whining and fighting from the backseats. Ahhh it's good to be home! :)

I've done 7 loads of laundry so far. I stepped on the scale this morning and my jaw literally dropped. But I exercised yesterday and today and didn't have *severe* pain, just moderate (haha), so that's good I suppose. And I just wanted to check in and say hello.

By the way, if you aren't already you should follow me on Twitter and Instagram!! That's where al the good stuff is (most of it copied over to FB to my personal friends and family, of course). But on Twitter and Instagram, I am Kristenj_C and I would love more followers. Come find me! :)