Merry Christmas!

 

 

Here we all are,

wishing a very Merry Christmas to all of you!

Best Wishes!

 

 

Love,

Kristen, Zac

Abigail (age 13), Isaac (age 11), Samuel (age 8) & Elisabeth (age 6)

 

not the kids' real names

fifteen

Zac and I just celebrated our 15th wedding anniversary! 

 

 And I know a lot of these pictures are repeats from facebook and Instagram, but I am making a (small) effort to get things back into the blog so I'm putting it here too.:)

 

 

First you have the privilege of witnessing the best wedding photo ever:

 

 The night of our anniversary we had decided to go out to eat at a "nice" restaurant, one requiring reservations, with tablecloths.;)  I stayed in bed most of the day trying to save up my energy, hoping my pain wouldn't be too bad that night and ruin my chance to enjoy a nice dinner.

 

I think it mostly worked.

 



 

 Of course I couldn't resist the chance to get lobster tails, yum yum (unfortunately I took this picture after I had slaughtered my mashed potato so it's not as "picture perfect", but oh well.). It was delicious.

 

 And I tried to catch a quick photo of Zac enjoying his meal, too.

 After dinner we walked around an outdoor mall for a bit.  But it was cold.  And the stores were closing.  So it didn't last long.  But we took an awkward pic in front of a pretty lit tree, so that was nice.;)  (Sometimes we are just very photogenic - haha)

Finally, the Instagram photoaday prompt for the day was pardon.  I was trying to be sneaky with my camera phone in the restaurant (just felt a little self-conscious in the fancy atmosphere) so none of them are very great photos - this one especially. But what I posted was that "15 years of marriage has required a lot of pardoning of many faults on both sides."

And that is the truth.

Happy 15th Anniversary Zac.:)

I will love you, again

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

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

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

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

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

(Oh, help...)

A fresh start with more of the same: Neurology update

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

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

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

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

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

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

Halloween 2012

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

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

Samuel and Elisabeth ran so fast from house to house it was hard to get any other pictures of them.

 

Isaac liked to exude an exterior of nonchalence, but underneath he was serious about candy.  And Abigail was just silly.  Dancing along the sidewalk, silly.

 

And finally, Elisabeth was a moody little witch. 

Here she is explaining, none too patiently, to Samuel that this picture was for her only.

 

And the picture, of her only:

Happy Halloween.

Nevermind

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

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

I give up.

NaBloPoMo

oh hey guys!

Remember this? 

 NaBloPoMo

National Blog Posting Month

where you post every day

for the month of November.

 

I've been doing it every year for a few years (even though not all of them are on this blog).

So I'd really hate to stop now.

Ehhh I'll give it my best shot, anyway.

 

Ready, set, NaBloPoMo!

 

STRONG

Last week I was struggling to get to sleep one night, still feeling queasy plus with a migraine threatening in the background, so I tried to find something to think about to take my mind off things.  I thought about how people with chronic illness and pain are often told they are so "strong" or told to "be strong." And it bothers me sometimes.  Because I'm not sure what that means exactly.  And if it means to never have breakdowns, or never complain, or never curse the situation, or anything like that, then I am fairly confident no one can be that strong.  But I do not believe those things are weakness.  So I decided to come up with my own definition of what it means to be "strong."  And to occupy my thoughts enough to drift off into sleep, I constructed a definition within an acronym.  Here you go:

S

I will stay. 

I know this may be hard for some of you to read or understand but yes, there have been moments when I have doubted my reason for being here.  There have been many thoughts of "what good can I do when I'm in bed all the time?" "can I really do this every day of the rest of my life?" etc.  And then when I start down that very dark path of thoughts, one that I hope most of you have never been down, I have found myself faced with the knowledge that I never really would be able to do it. Like a dead end, a wall before me, it just made me feel even more stuck, because it felt like I didn't even have a choice, really.  And so, for whatever reason, in my own twisted thoughts sometimes, I have decided that I have to look at it as a choice, even though the alternative may not be something I would ever actually do. 

Every day is a choice to live. 

I choose to be here.

I choose to do this.

I will stay.

 

T

I will trust.

I believe in God and I trust Him.

I do not understand all things (or anything) but I know He loves me.

I trust that although I may not be what I think of as "ok", my kids will be ok.  Somehow, they will be ok.

And I trust that my husband will be given the strength to help our family through this.  He will be ok.  Our marriage will make it through this.  Our family will make it through this.

I will do everything I can to find treatments etc, and then I will leave the rest and trust that there is more to life, my life, than I can see.  Somehow.

 

R

I will be real.

I will never be one who will put on a false face and pretend things are better than they are.  That is just not something I can do.  And I believe that by being real with others, others feel more free to be real to me.  I have had people email me with their own different struggles similar in some way to my own that they do not share publicly or freely, and I feel trusted and valued.  I think it's important that we can be real - open and honest.  I believe all our burdens are lifted when we can help share the emotional load.

 

O

I will remember others.

I will try to remember others who have struggles more difficult than my own, or lighter than my own, or equal.  The weight of their burden or trial does not diminish mine but it helps, so much, to not feel alone.  In this day of internet technology, no one should ever feel they have to endure something alone.  There is always someone somewhere willing to listen, someone who feels similar pain, someone who can just be there.  I sometimes feel so limited in what I can do for others.  But I am a good listener.  I can support and love and empathize.  This I can do.  Please come to me if I can ever help you in this way.

 

N

I will recognize my needs.

This is hard.  It is hard to listen to my body and do what it needs, when I feel a little bit conditioned to push through fatigue and a little bit of pain to get things done.  It is hard to not feel like I'm just lazy.  Or a wimp.  Or something.  It is also hard to recognize that I just can't do what I used to do (exercise a lot, triathlon, etc).  Or what I used to think that someday I would really be able to do (get through the day without a nap).  Here I am.  And I will recognize and honor the needs I have right now.  Physical, mental and emotional needs.  I need to be better to myself.  Perhaps the hardest of them all and requiring the most strength to actually do.

 

G

I will be grateful and look for the good.

Sometimes this is easier than others. We all know that. Part of the way I do this is by taking silly Instagram pictures and doing PhotoADay challenges.  Sometimes I make happy charts.  Sometimes I just hug and kiss my children (and my husband).  And sometimes all I see is darkness and I have to just sit and wait until the clouds pass.  But being strong means I will keep trying and keep looking for the good in my life and being grateful for the beautiful wonderful colorful life I have.

 

This is what being STRONG means to me now.

I think I can do this.

And when I don't think I can, I will fight my way back until I can think through this list and remember the small things that remind me I can.

I will be strong.

when it rains . . .

Funny how things just start falling apart sometimes.  Like we think we have things under control, but one thing after another just starts unraveling. 

Over the last 3 days, Zac and I returned from his business trip.  Then Samuel broke the neighbor's window hitting rocks with his baseball bat.  Then I was up til 2 in the morning with those awful painful esophageal spasms I get periodically (I might need to actually see a Dr for those again sometime - they are torture!).  Then the toilet in our master bath broke.  Then that night I got sick with some sort of terrible stomach virus.  I didn't get any sleep until about 5 am and had several moments when I considered having Zac take me to the ER just to give me something to make it stop.  I was talking in nonsensical gibberish syllables as I tried to just endure through each painful episode, which I've never experienced, so it was just bad.

Still sick today, but no more vomiting so that's good.  Zac installed the new toilet but the water pipe/tube thing is too short so we still don't have a toilet.  Zac also got sick (but not quite as bad).  And I was just thinking today how my tolerance for other illness-ailments-distress-pain (physical and emotional) has just become this very thin line since I have been dealing with the chronic face pain.  Everything feels worse.  I suppose that's understandable but it just makes everything hard, you know? Puking is terrible.  Puking with constant shooting pains across your face is almost unbearable.  Feeling lonely is bad.  Feeling lonely or rejected when pain has worn me down to tears already is just too much.  I think Zac is also treading a very thin line between handling things and losing it (such as over the cost of a broken window and new toilet in one weekend).  Having constant pain to deal with (or dealing with the me who is always in pain) means we just don't have the resources to cope with a lot else.  All of our resources, mental, emotional, and physical, are just stretched so thin.

Anyway.  Rough weekend.  I just can't wait until I can eat again, and not feel dizzy, puky, shaky etc.

I guess this is really just a plea (once again and always) for your patience with us.  We are just doing the best we can. 

On the good side, I am grateful for a husband who came in our room (he wouldn't sleep next to me as I moaned and tossed and turned) but he emptied my puke bowl for me many times through the night and bought me ginger ale in the morning. 
I am also grateful that most illnesses go away, and do not, in fact, last forever even when it feels like they will.
I am grateful for people who express care and concern.
I am grateful for my mom and Chelsea and Nathan (Chelsea's new hubby) who helped watch our kids so I could go on the business trip with Zac (more on that later, perhaps).
I have much to be grateful for. 

thanks for reading . . .

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! :)

Sometimes I may be a little prickly

But

sometimes,

so are you, dear.

So are you.

(just a little note to everyone. nothing personal.) ;)

The Sad Truth About Happiness (a book review of sorts) and other news

I read this novel recently and quite enjoyed it. It's a little strange and unexpected but some of that can be good now and then.

Here are 2 quotes that clung to me and wouldn't let go. They are long, but very pertinent to what I've been going through so stick through them.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

"Everyone's response to pain is different. There is no way to be sure that any two people feel pain in the same way. So much depends on our idiosyncrasies, how finely attuned our nerve endings are, how tightly or loosely our pain receptors are wired in to our brain and spine and fears. Our responses are entwined with our history and emotions, and are unmeasurable in any case. Even if we did all experience the same stimulus in the same way, there would be no way of knowing it. It is impossible to tease out the physical from the complex overlay of our motivations, anxieties, and tolerances. Pain has a limited and far from perfect vocabulary. I read once about an African language that must have arisen in a country with a great deal of experience with suffering. This language had a word for a malaise as specific as a painful pinching in the armpit. English is much less precise. Not much useful is conveyed by the words "sharp," "searing," "throbbing," or "dull."
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

"Life is perhaps after all simply this thing and then the next. We are all of us improvising. We find a careful balance only to discover that gravity or stasis or love or dismay or illness or some other force suddenly tows us in an unexpected direction. We wake up to find that we have changed abruptly in a way that is peculiar and inexplicable. We are constantly adjusting, making it up, feeling our way forward, figuring out how to be and where to go next. We work it out, how to be happy, but sooner or later comes a change - sometimes small, sometimes everything at once - and we have to start over again, feeling our way back to a provisional state of contentment."

- The Sad Truth About Happiness by Anne Giardini

Pretty relevant quotes there for me, wouldn't you agree?

In other news, I have weaned off the Zonisamide (yay for no more heartburn and crappy sleep!) and onto Tegretol, the gold standard anti-convulsant for Trigeminal Neuralgia. It's a little scary since I have to have bloodwork done periodically to check my liver and immune system function, which both can be affected on this med. Nice. But!!!! Come here, I'm afraid to say this too loudly . . . I'm gonna whisper (and if blogger were being nice to me this would be in teeny tiny font, but it's not) . . . but the thing is . . . I think it might actually be working!! Shhh . . . I don't want to scare it off. But yes. Amazing.

I got up to 800 mg, and was hit by carnival-funhouse-style dizziness, like everything was just a touch off balance, like someone tilted the floor just a little bit. Whoa there! Yikes. And . . . I started having moments where my face didn't hurt!!! It feels miraculous! It's not gone completely . . . but the pain comes more in waves instead of a very constant push. It feels amazing compared to what it's been like. I've been on this dose about 5-6 days now and the dizziness has faded quite a bit and I am feeling the best I have felt for nearly 6 months. If I stay very still, the pain is almostalmostalmost gone. The more I move around, of course, or exert myself in any way, shape, or fashion, the worse the pain is. But even that is more like a 3-4 on the 1-10 pain scale, instead of the very nasty 7-8 where I was hanging out before. So!! Very good news for the time being. :)

It's not a cure all, of course. But for now, I'll take whatever I can get.

a note to the father of my children

I don't often succumb to the temptation to get all sappy and gooey on my blog (or on FB etc). Or at least I try not to, usually. But this guy deserves some extra special commendation right now. He really does.

Because lately he has gone above and beyond what most dads are either willing or able to ever do for their families.

The last 6 months have been really rough on our family.

I have been mostly completely out of commission. Either dealing with the constant pain, or the side effects of all these crazy meds, or the increase in my depression that has been the result of both of those. There have been many many days (for weeks, and months) where I simply have not done anything at all. Where I haven't even gotten out of bed much at all. Ugh.

Zac has had to step in and be Superdad, filling in for both the mom and dad roles in our family.

He has gone to work full time, as usual.

Then he has come home and fixed dinner.

He has helped kids with homework.

Done the laundry.

Washed the dishes.

Straightened the house.

Given baths.

Done yardwork.

Led family scripture and prayer.

Given baths.

Gotten kids to bed.

Taken the kids to church.

Resolved fights and squabbles and arguments between kids.

Cleaned up hurts and put on bandaids.

Done the grocery shopping.

Supported and listened to me.

(and continued his crazy running schedule on top of everything else) ;)

Everything.

Everything to keep our household running.

He has done it all.

And I am beyond grateful to him for that.

He is not perfect.

I will not say he never complains, because that's ridiculous.

I will not say he has endless energy to do all this, because he does not.

But.

I don't know what we would do without him.

So Happy Father's Day, Zac.

Someday I will make this up to you.

And I will be able to give more to you than I have been lately.

More than just this little note for Father's Day.

I love you.

never again (nerve block saga, part three)

On Thurs before the procedure I got a call from the nurse who would be working in radiology with me for the procedure and she said that she had spoken to Dr B about everything and about the sedation etc and talked through what would be happening which I appreciated.

Then on Fri, Zac and I had Elisabeth's kindergarten graduation in the morning and we had to leave right after to get to the hospital on time. I was trying to rush and grab some pictures of her before we left and the last ones, Elisabeth was frowning impatiently at me because she wanted to go get some of her cake and not take pictures. Oh well. I'm grateful for a 13 yr old who could stay with her and eat cake with her, take pictures with her teacher, and walk home with the other kids.

I had to fast from midnight the night before for the sedation and the zonisamide anticonvulsant I'm on (for the pain) gives me heartburn - which causes nausea on an empty stomach. Combine that with some anxiety about having a 4-5 inch needle stuck in my face and I wasn't really feeling very well. I was already shaking and sweating. But Zac kept reassuring me that once I got the sedation going, I'd be ok. I tried to keep remembering that.

So, we checked in at the front desk. Checked in at the radiology desk. They gave me the order for he procedure. And it was the wrong order. It was the order for the Sphenopalatine Ganglion nerve block. THE ONE THAT HAD BEEN CANCELLED!!!!! AHHHHH!!!! ARE YOU KIDDING ME?!?! No, seriously. They don't have the order for the trigeminal nerve block. Not only that, but she tells me Dr B isn't supposed to be in that day. Um. No. I just talked to him personally on Wed and he said he's doing it. The nurse told me YESTERDAY he's doing it. Yeah, he's not on the schedule, yada yada, blah blah blah, have a seat, we'll see what's going on, etc etc.

So, then my nurse comes out and introduces herself to me and asks for the order. I tell her they have the wrong one. She talks to the receptionist. More talking. She takes me back and tells me they'll have to call around to the Drs and get a new order faxed over. Lovely.

Meanwhile, they get my IV started. I'm shaking and just thinking in my head that I won't let them sedate me until I know they've got the order for the RIGHT STUPID STINKING NERVE BLOCK. We're not off to a good start.

Then Dr B shows up. After more phone calls and confusion they get a verbal phone order for the correct nerve block. Dr B goes over the risks again and tells me there are 2 possible entries and they will look at my anatomy on the CT scan and determine the best way. Also, I didn't realize before that the CT scan is not exactly done simultaneously with the injection. It's a back and forth thing. So the needle goes in a little, they roll me into the CT scanner, back out to push needle in farther, back into scanner, back out to push needle in some more, etc. Oh. my.

Please please please just get me sedated . . . . . .

So. We go into the CT room. I lie down on the table, the radiologist puts me in the scanner to get my head right then tapes my head to table to I can't move it. I get my IV set up, blood pressure cuff on my arm, oxygen monitor on my finger, EKG tabs on my chest, oxygen cannula set up by my nose in case I need it. They scrub the side of my head. They've decided to go in the side of my head by my jaw, I'm not sure why. The nurse starts my sedation. She says I should start to feel relaxed and happy, and like I just don't care what's happening. Umm . . .

I start to feel just a little dizzy which I mention and she says that's probably the sedation. And then he starts to put the needle in. And it's like everything holding me together has just been punctured. It hurts so much more than I had ever anticipated. Excruciating. And why the crap don't I feel sedated?!?!? I start to cry. Reflexively, before I even realize it, tears just pouring down my cheeks, lips quivering, diaphragm convulsing.

They do the first CT scan and I try to breathe. I know I should try to stop crying. I know I should be strong. I know "people" endure so much more pain than this and are so much stronger than I am. But I just can't stop. I'm afraid of talking and moving my jaw and having the needle move and messing up it's location and causing a complication. I'm afraid of my tears leaking down onto the sterile injection site. I'm afraid they think I'm psycho. I just can't help it. I don't understand why the sedation isn't working. Why do I feel so alert? I thought I wouldn't care what's happening? Why does this hurt so much? No way on earth I'm not going to remember this . . . ..

The needle goes in deeper. They ask if I'm ok. I say no (and I remember thinking that I had no problem at all responding coherently - I thought versed made you say funny things?!?). They ask what's wrong and I say it hurts so bad. I can barely talk because I am sobbing so hard. He injects more lidocaine but I wonder why they don't give me more sedation. I don't know. It is the worst torture of pain I have ever experienced. They give me the oxygen. The injection seems to last forever. Back and forth. CT scan, more needle.

It's finally over. He asks me if I can see. So I open my eyes and say yes. He asks if I can swallow. I try to catch my breath enough to take a swallow and say yes. They detach all the monitors and help me climb over to a gurney and cover me with a blanket and I cover my face and sob as they roll me back to the recovery room. I don't stop crying for at least another 30 minutes. I look over and see the look of concern on Zac's face. He says the nurse warned him that I was "stressed." That's one word for it I guess. I feel shattered. Like the needle has gone in and just destroyed some essential part holding me together. Zac said the nurse told him my heart rate had gone down when they gave me the sedation so it had an effect on me, but then shot back up when they put in the the needle. I don't really know why the sedation didn't really work for me. Could the medication have had an opposite of its intended effect? Who knows. But that was truly truly awful.

They gave me something to eat and drink. I asked for a CD of the images from the CT scan (heck yeah, I wanna see this). One of assistants who had been in the CT room apologized for how awful that was for me as we left the radiology area. I didn't want to look anyone in the eye.

Here is one of the images. It's like a cross section of the base of the my head, looking up at my nostrils. It makes me look like I have a huge honker of a nose, but you can see the white line and gray shadow of the needle coming directly into my head there on the right side of the image. The report says the procedure took 20 min, so if you can imagine a needle being slowly inserted over 20 tortuous minutes right into the center of your head, well then, that's what it was. I have no idea what to compare it to.

But the resulting numbing on the side of my face (from the lidocaine) only lasted maybe a couple hours, unfortunately. It could take up to a week to know if the steroid is going to have any effect at all on my pain (nothing so far). My jaw has been tremendously sore. And I have been emotionally raw and worn out. Even if it works and provides some measure of relief, I don't think I will ever do this procedure again. I just can't imagine ever going through that again. Ever.

never again (nerve block saga, part two)

ok, so first on Tues May 29th I got a call from the hospital reminding me of my appt the next day for a sphenopalatine ganglion block. No, remember that's the one we cancelled?!?! Yeah. Seriously. It was CANCELLED!!! Arrrgggghhhh.

On Wed May 30th I went to the Pain Management clinic armed with my list of questions and with what I hoped was my biggest dose of strength and determinism. I wasn't going to leave. I would sit there all day. I would stare at her with my stare of death. I would chain myself to the chair. Oh I don't know. But I needed my answers.

She tried to show me a very poor illustration of the trigeminal nerve from a very old textbook that wasn't at all helpful. And I showed her the illustration that I had from my Striking Back book (the trigeminal neuralgia bible) and she agreed my book had a better picture. I had also found more informative graphics online, by the way. Ugh. And she really didn't know anything else. But she copied down my list of questions and called the Imaging Center to reach the Dr who was doing my procedure. No one answered the phone. She offered to walk across the parking lot to their office and see who was there and get some answers and I sat there and waited, feeling like maybe we'd finally get somewhere! But no. The Dr who was doing my procedure works all along the state, was not answering his cell phone (probably doing procedures) and no one else in the office was experienced with the procedure. But she left him a voice mail and promised she would call me when she heard back. She put her personal phone in her front pocket along with my list of questions and apologized for the mess and promised me to get my answers.

Ugh.

What was I to do?

I couldn't really sit in her office all day. It was 1:00. The Dr might not return her call until after office hours. My kids were at a babysitters. What was I to do?!?

So I left, feeling discouraged and defeated. Still no answers. Another wasted copay. Ugh.

Later that day I got a personal call from the Interventional Radiologist Dr who would be doing my procedure, Dr B. I had explained to the PA that one of my questions was how much experience he had in doing this particular nerve block (esp since no one seemed to have any idea at all about the other one they had proposed and I have a feeling that's why they changed it). So the first thing he told me was that he has lots of experience doing injected nerve blocks and doing CT guided nerve blocks, but as far as this particular type, doing a block into the trigeminal nerve root, he had only done one before in his career. One. Oh. But he said it went without complication and he felt confident in his ability to do it. Then he proceeded to answer my other questions. It wasn't really the experience I was hoping for, but it's just not something that is done very often. Crazy. But I was so nervous.

The trigeminal nerve root comes out in the middle of the base of the skull basically, so they either go through the cheek and straight through your face into your skull, or through your jaw into your head, and then kind of in the spot where 2 lines would intersect if you drew them from the front of your ear across to the other side and from your nose to the back of your head. That spot in the middle of your head? That's where the needle was headed. It was possible that it could "reset" the nerve and interrupt the pain cycle and cause relief for good. It was possible it would do nothing. It was possible that it could slip and mess up and cause permanent numbness. It could cause relief for a few days, a few weeks, or a few months.

I was supposed to be given conscious IV sedation, like what they give you for a colonoscopy (versed and fentanyl), so I would be awake and able to interact, but out of it and not really care. So I was told. I was so anxious, but I just kept thinking that once I was given the sedation I would be ok. I thought I would be ok. And I was looking forward to at least that amount of relief from my usual pain. At least I would have some sedation at last! ha. ha. He would be injecting 2 types of numbing agents that would wear off pretty quickly (but could last up to 8 hrs) and a steroid that would take up to a week to take effect.

He said this would help with diagnosing my condition more precisely. But it might not address all of my pain. It might indicate that I could be a candidate for surgery, if this was successful. He said that if I hadn't already seen so many other Drs and tried medications and things, then he might not recommend it, but given my history, this was the logical next step.

And so we decided to proceed.

never again (nerve block saga, part one)

For those of you who don't have the pleasure of following me on Facebook or Twitter and have missed the Saga of the Nerve Block, I'm going to try to summarize most of it and tell the remainder of the tale for you all.

I'm not sure if I'm up for it, actually. But I am hopeful that by writing it out, I can kind of recover from this awful experience. It definitely ranks up as one of the most awful experiences of my entire life and one that I hope to never repeat. I will never again willingly undergo this nerve block procedure, that much I know for sure. I've been shaking and dizzy and feeling terrible for the 2 days since; it's too early to tell yet if it was successful in terms of pain relief.

But anyway, here's the story:

So, Tues May 15 I saw the Pain Management Specialist. They decided to start out by trying a nerve block procedure. The PA, Dr and Intervention Dr consulted and decided a sphenopalatine ganglion nerve block would be the best place to start, I asked all the questions off the top of my head, I scheduled the procedure with the receptionist as I left (to be performed at the Imaging Center that they worked with) and I left thinking I would be having it done on Thurs! 2 days away! Hurray! Relief might be in sight! Unbelievable!

Got a call later that day that no, actually it had to be done with CT guidance which the Imaging Center does not have so it would have to be done at the hospital so the hospital would be calling me to schedule. Ok. This made me slightly nervous, as did the prospect of having a needle injected up the soft palate in the back of my throat. Ouch.

{ Side note: Wed May 16, I had an appt with a neurosurgeon who only agreed to see me after he looked over my MRI and notes and thought there might be something he could do for me. So of course I was a little nervous, not sure that I was ready to pursue any surgical options, but thought that I would like to know what those options were, in any case. I had told them all my symptoms and everything already, of course. Anyway. Got there. Paid $160 upfront. Met with the surgeon. He listened to all my symptoms. Very bluntly told me the only thing he could do for me would be to sever the nerve and leave half my face numb which he wouldn't do for me at this point even if I begged him. So basically there was nothing he would do for me. He said maybe after I've suffered with this for 15-20 yrs with no relief, then maybe we'd be at a point to consider it. And as long as I'm eating and sleeping, then I'm doing better than a lot of his facial pain patients (in a nutshell). Yeah. Thanks a lot. I sort of cried all the way home. It had just been such a complete waste of my time and money and stress and effort. And I was tired and I was hurting and I had worn myself thin with all of the emotion of my mom getting remarried and having all my family in town the previous weekend, then these 2 Dr appts back to back. It had been too much. Anyway.)

Thurs. May 17 I had a breakdown and I called neighbors to take my kids for the entire day.

Fri May 18 I called around and tried to figure out my nerve block order. I called the Imaging Center who didn't have the order. The hospital who didn't have the order. The pain management clinic to get the order. I was put on hold, transfered, etc etc something like 11 times before I finally got it scheduled it with the hospital for May 30th but then when I asked about getting sedated (since that would need to be part of the scheduling) no one knew what to schedule for. No one had ever heard of the procedure. Not even the specialists at the hospital. They were "looking it up." I was starting to freak out. And I started having a lot more questions I wanted to have answered. The hospital was calling the Imaging Center to figure out what I was having done and they were calling the Dr who worked with them but was not always there at the Center and I felt like we were playing neverending phone tag of the most frustrating kind ever.

The following week May 21-May 25 - I don't even know all of the dates or the sequence of events exactly. But at some point, the Drs all conferred and decided NOT to do the sphenopalatine ganglion nerve block but to do a trigeminal nerve block instead (one of my original questions had been why we weren't targeting the trigeminal nerve original anyhow since that's where my pain is originating, but anyway . . .). I got this message from the Pain Management PA on my answering machine just saying that this would be "easier." I guess I assumed this meant it wouldn't require the mess of needing the CT scan and sedation and needing to be performed at the hospital. I'm not sure why I thought that. All of the phone calls had become very confusing. Who knows what I thought. But I did call back and talk to her and had some of my questions answered. And somehow through the course of the week, I called the hospital and cancelled the appt for the nerve block and called the Imaging Center to schedule the other nerve block there instead for Tues May 29th. Phew! I thought, done at last! It's scheduled. Again. Yay.

Got a phone call from pre-registration at the hospital on Thurs and I said, no, I cancelled that procedure, I'm having a different one done now at the Imaging Center. ok. Taken care of.

I was still trying to reach the actual Intervention Dr, however and get my questions answered about the procedure, including, but not limited to, some simple things like, what are you injecting into my face and where exactly.

On Fri May 25 (a day when I had specifically been told that he would be at the office and I should call then to get my questions answered), I was put on hold for a long time, told there "had been some confusion" and transferred unknowingly back over to the pain management clinic where I was informed that the trigeminal nerve block could NOT, in fact, be done at the Imaging Center, but also needed to be done at the Hospital under CT guidance. At which point, I lost it again, explaining that I JUST CANCELLED THE APPT AT THE HOSPITAL THE DAY BEFORE!!!! They tried to calm me down. She offered to get it scheduled for me. And she said I could come in and get my questions answered the next week. Holy crap.

So it was scheduled again. For the 4th time, mind you. For June 1. At the hospital. But I still didn't know what kind of sedation they would give me, where exactly the injection would be going in my face (although some google research had given me some pretty good ideas), or exactly what medications would be used (the first Dr had said "usually lidocaine and sometimes a steroid" - um, NOT HELPFUL!).

Keep in mind also that, well, I tend to have a sort of high anxiety level (aw shucks, yes I have a diagnosed anxiety disorder, along with depression. So there you go.) And all this chronic pain, and stress and crazy Dr mess was just not helping any of it!!! Seriously. People. This kind of stuff is not good for me.

But I had the appt to go talk to the PA at the Pain Management place for Wed May 30th and I had determined that I would not leave until I had all my questions answered to my satisfaction about the trigeminal nerve block. Surely 2 days before the procedure they would have to find a way to get the answers for me, right?

Oh, if it had only been that simple . . .

just don't judge

{May is Mental Health Awareness Month and I am talking about it}

Saw this posted somewhere elsewhere and thought it tried to express some things that some people really don't understand:

on the way to school today

Isaac (age 11): I learned yesterday that you don't have an adult brain until age 25

me: oh yeah?

him: yeah so you think you know what you're doing but you really don't

me: hm that's interesting because a lot of people get married before age 25. Me and dad got married before then. Actually we even had Abigail before we were 25.

him: really? how old were you?

me: hm, we were both basically 23 when we got married and 24 when she was born

him: you had a baby only a year after you were married?!?

me: well, it was more like a year and a half . . .

him: wow! that must be like really unusual because 99.5% of the time the sperm doesn't get to fertilize the egg . . .

me: {chuckling a bit while pulling up to the curb to drop them off}


Yep.
This conversation brought to you by the 5th Grade Maturation Program.
Fun Times.;)

have a seat

**May is Mental Health Awareness Month and I'm talking about it**

"Those who feel the breath of sadness

Sit down next to me

Those who find they’re touched by madness

Sit down next to me

Those who find themselves ridiculous

Sit down next to me"

- James

Wellllll . . . life this week has been crazy. My mom is getting married tomorrow! Anyone else out there have experience with divorced and remarried parents? I'm not sure what's considered "normal", but it feels a little stressful to me.

Also, I've decided I don't care for my neurologist and have been looking for a new Dr. and/or new route or avenue to pursue.

In so doing, I have an appt with a pain management specialist and a neuroSURGEON next week. 2 big appts in one week! The neurosurgeon wouldn't even see me until he reviewed my MRI and decided whether or not he could help me. Yikes. So. I'm a little nervous.

But I'm off the lyrica and feeling much more alive, thankyouverymuch. Dealing a little better with the pain, but the pain hasn't changed very much.

Anyway. Those 2 things have been weighing on my thoughts quite a bit. I have a lot of other mental health topics I really want to write about, but in the meantime, just hoping there are others out there who are willing to "sit down next to me" and talk about some of this stuff. Don't raise your hand, don't stand up, don't make a fuss, or storm the castle, just come have a seat and maybe bring brownies and we'll talk. It's good to talk. :)

Questions:

1. Do you know someone who suffers from a mental illness? Depression, anxiety, bipolar, schizophrenia, etc?

2. Do you believe there is stigma surrounding these illnesses?

3. What can be done to reduce stigma, if anything?

4. What is your gut reaction when someone tells you, or what do you think it would be if someone told you they were suffering from a mental illness? Fear? Pity? Sorrow? Blame?

5. What do you believe you could do to help someone with a mental illness?

Think for a minute, and honestly respond if you feel like it.:)

More next week . . .

Thirteen Reasons Why (Part 1)

*May is Mental Health Awareness Month and I'm talking about it.*

All opinions are mine alone, based on my own very personal experiences, experiences of people close to me, many many years of my own reading and research, a few relevant college courses, some counseling, talking to lots of Drs, etc. I consider myself fairly educated and informed on mental health issues, but also just have my own unique perspective and opinion on things that you may or may not agree with. I hope to present my views respectfully and compassionately, keeping in mind that we are all different, and ask that you do the same! Thanks!:)

Let's first jump in with perhaps the most taboo of all mental health topics: suicide. I read this book in March and I could hardly sleep at all the night that I finished reading it, Thirteen Reasons Why, by Jay Asher. Partly was just that it was a topic and story that stirred up a lot of emotion in me, and then, as I always do, I had gone on Goodreads to add it to my list and I browsed some of the other reviews. My thoughts became even more tumbled and tossed as I considered and debated and wanted desperately to discuss some of the responses I had read. I've been thinking of writing this blog post ever since.

SPOILER ALERT: I might give things away. If you don't want any details spoiled, you may want to read the book first before proceeding. It may not matter. But it might. You've been warned.

Here is the plot summary from Goodreads:

--Clay Jensen returns home from school to find a mysterious box with his name on it lying on his porch. Inside he discovers thirteen cassette tapes recorded by Hannah Baker, his classmate and crush who committed suicide two weeks earlier. On tape, Hannah explains that there are thirteen reasons why she decided to end her life. Clay is one of them. If he listens, he'll find out how he made the list. Through Hannah and Clay's dual narratives, debut author Jay Asher weaves an intricate and heartrending story of confusion and desperation that will deeply affect teen readers.--

Hannah lists 13 people who had interactions with her, mostly negative, that impacted her decision to commit suicide. A lot of hot teen topics, like rejection, rape, spreading rumors, betrayal, etc. come into play. So, since Hannah lists her 13 reasons why she decided to end her life, I'm going to list my 13 responses to this book, responses to responses, 13 thoughts, 13 ramblings, things to think about, topics to discuss, reasons to read it, etc. Hopefully it will make some sense.

1. A lot of readers complained that the book seemed to make it seem ok that Hannah left a tape for these 13 people in her life blaming them for her suicide to make them feel guilty. I'm not sure what to say about that really except that the people left behind after a suicide will probably be looking for answers and be ridden with guilt (whether or not they ever should) anyway. I don't know for sure. I have never been in this situation. But I don't think the book makes this seem "ok" any more than any suicide is "ok." It's not. It's not ever. There is no way to get around the complexity and depth and confusion of feelings of those left behind, I imagine. I don't know if the presence or absence of a note of one kind or another ever makes that better or worse. I don't know.

2. There was also an idea that somehow presenting this idea of suicide makes it seem like more of an option to teens who might be struggling. I know that there is the fear of some "copycat" crimes, so to speak. But I am reluctant to think that a book like this might be impetus to put someone over the edge and have them suddenly think "hey this is a really good idea! I'm gonna do this!" Feelings of isolation, being misunderstood, and like there is no one to turn to seem like they are much more dangerous than reading a book like this. Addressing the topic and talking openly takes out some of the sting.

3. One of the things that is emphasized again and again in the book is the warning signs of someone feeling suicidal. Hannah displays so many of them it almost feels like an 8th grade health class movie at some points (this also gets some criticism). And no one picks up on them. And of course they wouldn't, because we wouldn't have this story if they did, obviously. The idea, of course, is for you to think of those around you and think hard and if someone ever starts showing any of those signs, to do something and not be afraid to do it. Seriously. Youth (and adults) need to know there are resources to get help and where to get it, for themselves or a friend. This book points some of them out. So Kudos for that.

4. There is some talk about poor Clay, the other narrator (besides Hannah herself) who finds the box and listens to the tapes and tries to figures out how he made this awful list of people who made Hannah feel like she wanted to end her life (which she did). It turns out Clay did nothing wrong. Hannah put him on there to let him know he didn't do anything to hurt her. I think it made him an effective narrator though because otherwise we would hate him and wouldn't want to listen to anything he says.

5. At the end of the book, the author points out that one of the things he wanted to get across is that what we do matters. What we say, or don't say, to another person, might matter more than we know. We matter. We matter to each other. Sometimes we like to think we are our own little islands. Standing strong and alone, not affected by anyone, making our own choices, doing what's best for us and letting everyone else do their own thing. But what we do to each other matters. Of course we are only accountable for ourselves. And no one "caused" Hannah's suicide - or anyone else's. That was her choice and hers alone. But could someone have helped her? Could one person doing differently have made the difference for her? Maybe. We can do so much good and affect people for good. Goes both ways. This is a tricky balance because then it gets into the guilt again, and whether or not we should be made to feel guilty when someone feels bad for something we've done (is that manipulating, or a natural consequence?). But I think in all the teaching we do in our children that no one can "make" you feel a certain way, we need to be careful not to inadvertently teach that we are not responsible at all for actions that result in feelings in others. Hm. More on that later, I think. But what we do matters. Big lesson.

6. And finally (for today, since this is turning really long) one of the most important things about this book, and this topic, that kept mulling around in my brain and kept me awake all night, was the importance of not judging anyone else. Ever. Ever. We will never know why someone has done what they have done. Not if they have left volumes of journals. Not if they left a note. Or 14 cassette tapes. Not if you were their best friend. Not if you were their therapist. And certainly not if we are observing from the outside as most of us are. We will never know someone so deeply that we could ever understand the depth of pain someone must have felt that they would take their own life. I leave that to God alone. Just please please don't ever judge. I saw so many comments like, how selfish it is, what kind of reason is that, I suffered more than that and I'm still alive . . . I mean, really?!? How could we ever understand? If you've never felt that way, or suffered from a mental health issue, then just be grateful, truly grateful. And don't judge someone else who is suffering in a way you will never understand.

PS - If you have felt that way, or are feeling that way, I hope you have gotten help, or will . . . please . . . find someone to help you. Email me at kbluedays at gmail dot com if you have any questions for me personally or if I can help you in any way. :)

(to be continued . . . )

Suicide Help Lines:
Lifeline 1-800-273-8255
http://www.suicidepreventionlifeline.org/

http://www.befrienders.org/