The Difference a Year Makes?

So, I've been thinking (a dangerous past time, I know.)  A year ago, I was getting ready to fly to Minnesota to go to the Mayo Clinic, where I would consult with doctors and determine the cause of my headaches.  First, I cannot believe it was a year ago.  Second, I cannot believe I feel essentially the same as I did then.

I have been off of the medication the neurologist at the Mayo Clinic suggested I try for about 5 weeks now.  After being on it nearly ten months, I had determined that it just wasn't working.  I do think that it decreased the pain by about 5 percent or so, but when all is said and done, that tiny amount of "relief" it was giving me did absolutely nothing for me.  When the days were bad, I still had to go to bed.  When the days were medium, I still had to try to function with an ice pick in my head.  When the days were good, I still had to operate with a lingering headache in the background.  It's just that it hurt a teeny bit less.  And the side effects just weren't worth it any more.  I was going through life feeling as if I had to drag myself through wet cement.  I was exhausted.  Not to mention the three times a night I had to get up to use the bathroom. (And that's not just cuz I'm old, Emily.) ;)

I decided I'd be better off without the medication.  It was a good decision.  I still am tired all of the time--a side effect of chronic pain.  But, it feels more like moving through mud or pudding than the hardening cement of medicated life.  And it's nice to not get as dizzy when I stand up.  Sure, my head hurts a tiny bit more, but not much.  And my lifestyle hasn't changed a bit since stopping.  (I'm still pathetic, just like I was before.)

So, what now?  Well, nothing.  There is no cure for my chronic condition, which is not caused by anything other than the condition I have, namely Chronic Daily Migraine.  To be diagnosed with true primary Chronic Daily Headache or Migraine, there must be no underlying cause, which is true in my case.  As it says on the Mayo Clinic website,

"The causes of many chronic daily headaches aren't well understood. True (primary) chronic daily headaches don't have an identifiable underlying cause. They may occur if:

• You develop a heightened response to pain signals
• The part of your brain that suppresses pain signals isn't working properly."

It's my brain.  It's how I am wired.  Lucky me.  And I think I can safely say that I have reached the point where I have exhausted my resources in trying to prevent the headache.  As the website puts it,

"Unfortunately, some chronic daily headaches remain resistant to all medications." 

So, now my focus has got to be on just living with the headaches.  (I should say headache--it never stops, so it technically is just one headache.  And I think it's been around long enough that it has earned a capital H, don't you?  Headache.)  Fortunately, there are things that can help the Headache.  I have some pain medication that sometimes helps (not very much today).  Ice packs, dark rooms, quiet, anti-nausea pills, massage, muscle relaxants, caffeine and my painkiller sometimes help.  Avoiding stress, being overheated, and strong perfumes can be beneficial.  Occasionally decongestants help.  The best thing I do to deal with the Headache is pray my guts out and change my expectations.
I have to expect less out of my day.  Expect to accomplish less than those long-ago pre-headache days, and learn to budget my time and energy.  I think I'm getting better at this all of the time, but, frankly, it kind of stinks. 

Imagine that I have a handful of tokens I cash in for my energy or time out of bed for each day--say, seven.  Well, some days, just getting out of bed and showering can use three or four.  Sometimes less.  But always at least one.  I must carefully weigh my options in "spending" these tokens.  Should I skip the shower and make-up so I can clean the shower?  Should I do the grocery shopping or cook dinner?  Can I meet someone for lunch and still have enough left in me to stop at Target on the way home and get dinner on the table?  Probably not if I shower.  Should I go jogging and use them all in thirty minutes?  (This never wins.)  And all this I decide in the morning when I am generally feeling my best.

If I overspend too early, I'm out of tokens and in bed before the girls are even home from school.  If I underspend, I have a higher chance of quality evening time, but I may spend too much time stressing about the things that I "should" be doing, which actually can deplete tokens as well, or at least contribute to the Headache.  Sometimes I can conserve tokens by having a power nap with my ice pack in the middle of the day.  (I think sometimes I fantasize about naps with ice packs like a pre-teen girl fantasizes about meeting Justin Beiber and his hair.)  I never know how I will feel from one day to the next, and sometimes even one hour to the next, so even carefully planned token spending can go awry.

If I want to do something like go to an evening polka dance, I must be careful about how many tokens I use that day.  Occasionally, I can borrow tokens from the next day, but I generally have to pay them back with a hefty interest--usually I'll have a horrid headache the next day and will probably spend the majority of the day in bed.  Also occasionally, I can count on adrenaline and my nifty "bag of tricks" (read: medications) to sustain a semblance of normalcy for a short amount of days.  But, again, I must usually repay these times with days spent in bed using all of my tokens to just wander to the kitchen for sustenance and a fresh ice pack, making a pit stop in the bathroom on my stumble back to bed.

The good news is I have a really comfy bed.  I have discovered a good ice pack that molds to my head and stays cold a long while. I have a fan in my room that blocks out noise from the outside.  And unlike some people that have Chronic Daily Migraine, I can usually read unless I am very, very miserable.  And most of the time looking at the computer doesn't bother me too much.  It's the pesky little things like thinking and retaining thoughts that are the hindrance to enjoyable reading while mildly miserable.  Which might account for the strange habit I have of checking books out at the library, reading them halfway through, and then coming to the strange realization that I may have actually read the book once before.  (Or twice--who knows?!)  

So, the game plan for now is living with a chronic illness.  Lots of people do it, and many do it well.  That's my plan.  Just because I have only a very few "tokens" of energy compared to many others, doesn't mean I can't be a positive, cheerful person.  It doesn't mean I can't accomplish anything, it means I will accomplish different things.  And, I am sure that there are still many who will wonder why they haven't figured out what is causing my Headache (they did: Chronic Daily Headache), and wonder why I don't do anything to try to get rid of them (I have: name a medication, I've probably taken it) (I do: see six or so paragraphs above) or even wonder why just a headache makes me unable to function the way they do (chances are they've never had a headache, and certainly not a Headache that has been non-stop for five years).  But, that's okay.  I know this is what I need to be doing right now. (In all thy ways acknowledge him, and he shall direct thy paths. Proverbs 3:6)

Where does this put me compared to last year at this time?  Well, I feel the same as far as the Headache goes, but I am a bit better at dealing with the pain.  Or at least managing my time and energy despite the pain.  I'm not perfect at it, and certainly many of you have seen me more than once not being cheerful and positive. But, I'm getting better.  I feel miserable most of the time, but I can (most of the time) feel at peace with that.   I certainly have many friends and family members that encourage me and lift me up.  We have generous people that bring us meals.  We have kind people that offer relief in many other ways.  And a God that offers comfort, guidance, peace and assurance.  What more could I need?

Finally, brethren, farewell. Be perfect, be of good comfort, be of one mind, live in peace; and the God of love and peace shall be with you. 2 Cor. 13:11

I can do all things through Christ which strengtheneth me. Philipians 4:13

  

Once On This Island

(This must be a record (at least of late)--blogging again after only three days.  I suppose insomnia has its perks.) :)

So, how about some musical fun?  We had a great time with Grandma B here to visit in mid-March.  She came mostly to see the girls perform in their musical, Once On This Island.  The girls think it is so fun to have someone in the audience besides Mom and Dad.  We also had some ward friends come see the play, which made their night. (The girls' night, not the ward friends' night--it was a great show, but this is middle school, after all.) ;)

I took some video at dress rehearsal, but then I found out because of copyright laws that I shouldn't have.  Whoops.  But now, somehow, I cannot find the videos on my camera or computer, so it looks like I obeyed the law after all.  Which is a little too bad because it would have been fun for you to see at least one song and dance.  Oh well. 


(These pictures really aren't great--I was sitting too far back and couldn't use a flash.  Plus, I have no idea how to use the settings on this camera.  But, you get the general idea.)

They're acting disappointed, is it working?

Celebrating the story in the finale song

Can you hear?

With their director

With Grandma

All three girls did a great job with their singing and dancing.  We are proud of all of their hard work! 

Besides the show, Grandma got to go to the after-show cast party with us, and we also went to church, did some shopping, went out to eat, and took her to the airport.  It was a fun visit, even though it was short. 

A Spring Surprise

It's Spring Break.  We went on a little four day get-away.  It was great, and will be reported on once I decide to download all the pictures.  But, do you want to hear a CAH-RAE-ZEE story?!?!  I thought so.

Last night, we traveled home from where we were.  We walk in the door.  We unload the groceries.  We start unpacking the suitcases.  Sleeping Beauty points to the floor and says, "Mom, did Dad drip paint on the floor, or what?"

"I guess.  Weird."  And I scrape it off with my fingernail.  (Thank you laminate floors.)

And then SB walks into the front room and says, "There's some in the entryway, but it's also yellow like the kitchen paint.  How'd it get in here?"  And I scrape it off with my fingernail.  (Thank you laminate floors.)

And then I'm really puzzled, and I say to King, "How do we still have drips of paint on the floor?  Did the ceiling get wet and drip spots or something?" looking up to inspect our newly painted ceilings.  Nope. They're fine.

King says, "Um, I've mopped the floor since we painted, where are the spots?"  And the girls keep finding more, and I'm getting a little creeped out, and then Snow White says, "This one has gray spots in it," just as King says, "Uh...could it be bird poop or something?"  Likely thinking of that one time I went to the doctor and a little bird found it's way down our chimney and scared the jelly beans out of me when I came home and it flew at my head.

But we had been gone for four days.  Was it alive or dead?  And then the girls are freaking out and we see all of these pale yellow to gray spots ALL OVER the kitchen and King grabs the broom and we prepare for a full-on war with the Alfred Hitchcock birds.  And I realize, I had scraped those spots off with my fingernail.  Ew.  (Thank you anti-bacterial soap.)

The girls move on to the family room and the living room, looking for spots and King and I start looking under couches and behind curtains for a bird the size of an ostrich.  (Okay, not really.  But, honestly, I was getting a little freaked out and was SURE that a bird was about to jump out from behind the book shelf and kill me or something.  Plus, what little bird could make such a big mess?  Think Big Bird crossed with boogie man and that is what this thing was growing into in my mind.)

And, from the front of the house comes Sleeping Beauty's little voice, "Ew, it got some on the piano, and on AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHH!!!!!  A BIRD!"  And all three girls come running to the family room and King runs in the opposite direction with his broom to protect all of us from the mighty intruder--which was actually a pathetic, sad, limping black/blue bird that was mostly dead and quite sickly.

He scurried the little birdy outside and once he was out of the view of the girls, he put the sorry thing out of it's misery and came back in to help inspect the damage.  Poor little thing.  Poor evil little messy thing.

The good news?

• I'm super anal about closing all of our doors when we go out of town.  Luckily, I was the last one in the house, so they were all actually closed.  So no bird in our bedrooms, pantry or the bathroom.  Phew.
• I am the only person in our house who likes all of the kitchen cupboards closed (seriously, why am I the only one who knows how to close those?!), and I was the last one in the house, so they were all closed.  Phew.
• I had put all of the clean clothes in my bedroom before we left.  In (lots of) piles and (lots of) baskets.  Imagine how much more laundry I would have had to do if I had left it in the dining room where it was the day before?  Yikes.  
• We found no bird droppings on our couches or large rug.  So that's nice.  
• Maybe our color of carpet hides bird dropping color (gross, gross, gross!!!) or it missed the carpet?  Am shampooing the carpet anyway.  Gross!
• Our washing machine and dryer work very well and we have lots of bleach and Lysol on hand. 

Because that is pretty much all I have done since we got home.  Everything that could be thrown in the washer has been washed.  I have sanitized all surfaces so many times, I might be wearing holes in the counter top.  I've mopped the floor twice, just to be sure.  Forget doing vacation laundry and unpacking those suitcases, I am not getting the bird flu or salmonella or whatever rare disease bird droppings might like to share with us.  Yuck.  No thank you.  I think before King made dinner, I had to wash every pan, just in case the bird happened to open up the cabinets and look at the pans.  (You never know.  I swear those birds on the Muppet Show had opposable thumbs.)

We are NOT ever having that fun surprise again.  So, guess what I'm doing tomorrow?  Buying new screen for the top of our chimney and climbing up on the roof to install it.   Even if I have to brave climbing on said roof in a snowstorm to do it.  (Which it looks like I will.  Welcome, Spring.  I just love Springtime surprises.)  And this new screen chimney sculpture will be my new monument to honoring the Springtime birds.  The outside ones.

(It occurs to me that perhaps I have read too much Daphne du Maurier of late.)

Conversations in the Car

You just never know what someone will say while riding in the car:

"Mom, did you know that so-and-so in 6th grade takes drugs and pierces her own ears and lips and nose?  I wonder what would posses her to do that.  Would you ever pierce your own ear, because if you did I think I would pass out.  Would you pass out?  Maybe you should try it...but don't let it stay or anything...let the hole close up.  That would be so, so gross.  Who would do that?"  Well, not me, that's for sure.

"Did you know everyone has a blind spot?  Mom, close one eye and put both your hands out in front of you, like this."  Um, not while driving, thanks.

"I SOOOO wish I was a puppy.  If I could have one wish, I would be a puppy.  They are so cute.  It would be so fun."  I pointed out that she would have to take a bath with her tongue.  But she pointed out that she could go to the bathroom wherever she wanted and wouldn't have to worry about toilet paper.  (I kind of think toilet paper is a good invention. I think the years of use have made me partial to it.  And the bathroom, for that matter.)

Really, sometimes I am nervous to get into the car and see what the topic of the day might be.  Scary.

Whew!

Another week has flown by!  I feel like I haven't had time to breathe, much less blog.  The bulk of the week for me was spent in a migraine fog, and shuttling children to and from play practice.  I think there were some other things, but I am having a very hard time remembering what they were. 

Speaking of play practice, we are finally almost at the end of those.  Yay!  This week is dress rehearsals and the girls are getting very excited.  They are all three featured dancers and SB and C are featured soloists in two of the songs.  The play this year is Once on This Island, and they have had a fun time preparing.  (For you local readers, you are welcome to come and see the play at their middle school on Friday or Saturday night at 7 p.m.  $5 for adults, $3 for kids.  Should be fun!) 

Cinderella has also had three Skill Bowl (Academic Competition) meets in the last week.  She's been a busy girl.  One more tomorrow, and two more next week.  My favorite question in the general knowledge category today:  "What classic show featured the characters Fred and Ethel Mertz?"  The two answers given by the teams:  "Umm...Seinfeld?" and "The Simpsons?"  So funny!  Too bad C wasn't up there at the time, she knows the answer.  (And if you don't, maybe you are too young to be reading this blog!)

Grandma B is coming!  She is joining us for the girls' show this weekend.  We're excited to see her, and the girls can't wait to have her see the musical.  Cinderella also has a piano competition this weekend, and it's good for Cinderella have someone to show off her piano skills to besides mom and dad. 

So, as you can see, not a lot is going on this week.  (Ha!)  And, since it is King's spring break from school, we decided to paint the house for fun.  Not all of it, just the ceilings and walls in all of the main living areas.  So far, it looks great, and King has done a great job.  (I'd like to say I've helped, but really, the 1/3 of the edge brushing I have done was not that helpful.  I'm a good cheerleader (translation: bossy wossy), though.)  :) 

To sum up, we are in over our heads, but that's not that unusual, so we're treading along.  We just don't have a lot of time to keep you updated on our craziness.  Hopefully we will have pictures and tales to tell from our weekend with Grandma next time I get around to making a blog appearance.  Until then...

Nice Week

You know how moms say, 'If you can't say anything nice, don't say anything at all.'?  Perhaps that could account for the reason I haven't blogged the last week.

Or probably not, since this blog typically leans to the sarcastic/cynical side anyway.  Perhaps it's just laziness on my part.  Or busyness.  Or neglect.  Or winter stinks and, for the love of peppermint hot chocolate, can't it just end already?! (Okay, that didn't have anything to do with not blogging, I just had to get it off my chest.)

So, let's have a little run-down of events of the past few days, shall we?

• Cinderella had her double ear infections.  And continued to have a cold and act like a bear for a week.  (Was it the ear infections, or is she just 14? was my constant question.)  She bravely stuck through a week of school but visited the Nurse's office at least once a day.
• Other school/bus issues that won't be detailed at this time, but can I just say, Can't kids just be nice?!
• We went to a nice New Beginnings program, that introduced Personal Progress to SW and SB.  They are excited to get started, and I am excited to watch them learn and grow in their relationships with the Savior. What an inspired program!
• We got six inches of snow and school was canceled on Friday.  Again.  Since the last time we had no school for a week, I was pretty much bedridden, I promised the girls that I would take them somewhere.  We went to lunch and the mall with a friend, and had a good time.  (We left the bear home, she didn't want to go.  I'll pretend I wasn't relieved.)
• Saturday, Cinderella and Sleeping Beauty had an all day choir convention.   But Cinderella felt too lousy to go, and King felt too lousy to go to the concert, so Snow White and I went to watch Sleeping Beauty and had a fun time.  The twins both loved seeing their former music teachers and principals and it was a lovely concert.  They always do such a great job.  And then we spent nearly $20 for dinner at Steak and Shake.  Blech.  Why do I ever go there?  (I'll give you a hint: Mint Oreo Shakes.) 
• Sunday, King and Sleeping Beauty stayed home from church--they were sick.  SB could barely talk after her long day of singing.
• We had a really fun thunder and lightening storm all night long that left us not only sleep-deprived, but with new lakefront property.  And no school.  Again.  It's fun to live on the lake, but it would be more fun if we had a boat, and if it were summer.  Fortunately, we won't have to see how much fun summer on the lake really would be, as our lake has pretty much receded and we can now drive out of our driveway without wondering if we will drown. 
• King, Sleeping Beauty, and Cinderella braved the driveway lake driving to make it to the doctor, where they found that King had a nasty sinus infection, Cinderella still had ear infections, and Sleeping Beauty had bronchitis.  Since I woke with a monster headache that day, poor Snow White sort of held down the fort and kept putting movies in for everyone to watch, and making sure everyone got the correct antibiotics.  It was a blessing we didn't have school so they could all get some rest.  
• Cinderella came home from school today announcing that she was dreading this year's State Standardized Testing, since one of her teachers told the whole 8th grade that Cinderella had the highest score in the entire school on two of the subjects last year, and how is she supposed to improve on that score?  Too much pressure, she thinks.  I think the pressure might be good for her. 
• I had lunch a couple of times with good friends.  Doesn't time with a good friend make all the other hours of tedium so much easier?
• A laundry monster exploded out of the laundry room and into the dining room.  I'm not really sure why I mention this, as this is not an occurrence specific to this week.  It happens all of the time.  (I think maybe when I typed 'tedium' above, my brain went straight to laundry?)
• Speaking of laundry, I bought my 14-year-old a "dry clean only" dress.  What is wrong with me?!  I don't even buy those for me.  (I'll tell you what is wrong with me:  I have chronic migraines and when I was shopping, I wanted to be home in bed, instead of trying on dresses and carefully reading tags.)  So, now she's not allowed to wear the dress so I won't have to pay to clean it. :)

And that is pretty much our week.  I am wondering if I should have gone the 'don't say anything at all' route.  It certainly would have been much easier on you, dear reader.  Well, to make up for all of the useless drivel, how about a nice quote?  We all have a bright (if still laundry filled) future!

     "The reason I am so confident about your ability to find a bright future in the midst of a challenging world isn’t because I know each of you individually, but because I know that the Lord lives and loves us. He is the real reason each of us has a bright future. We can do all things through Christ who strengthens us (see Philippians 4:13). Because we are children of our Heavenly Father and because of the Atonement of Jesus Christ, I know our futures are bright.

     "Yes, we live in challenging times, but so did Mary, Moroni, and Joseph Smith. We don’t have to be carried along in the current of the times.

     "I know that the Lord lives and loves us. He is the real reason each of us has a bright future."  Paul V. Johnson, "Make Yours a Great Life", Ensign, Jan. 2011, 38–40