Day six The Hardest Thing

My days are longer than most.  That is okay.  I am okay with that.

What is the hardest thing I have ever done?

Come to terms with the fact that I may never enjoy a pain-free day, a short jog, surf, hike or bike again.

And I did.  I came to terms with it.  I accepted it.

It may seem to you reading this now, knowing that I was able to come through and enjoy most of those things (pain-free day aside) that it wasn't that bad.  It was.  It might appear that because the 'worst of the worst' only lasted 18 months and then the second 'worst of the worst' only another 18 months after that it wasn't really that bad.  Let me assure you that it was that bad.

I put everything on the floor of my pergo-covered home.  Diapers, clothes, wipes, snacks, etc.  I would scoot around with Lily on my stomach.  During her naps I would lay down flat.  ALWAYS.  I would never clean or craft or anything else.  Often I would play with her while I lay on the couch.
Lily slept in our bed. . .until she was 3.  I couldn't get up to nurse her,  and by the time she was weaned she was so used to it and I was so so so so so tired all the time, it wasn't worth the effort to retrain her.

When Lily was 18 months old I was watching a friends kid.  I was (of course) sitting on the floor with the kids as they played.  The other child stepped across my outstretched legs and little baby Lily cried out in alarm:  "DON'T TOUCH MAMA KNEE!"

Sheets touching my knee would send me through the roof.

I couldn't drive for several weeks.  I could not move my foot from the gas to the brake.  Even after I could drive it was excruciating.

I took a stroller everywhere.  I had someone in Paia once tell me off for putting my kid in a stroller while I shopped.  I was a bad mom apparently.  My mothering guilt was already so sky-high, I never took Lily out in the stroller again.  I trained her to sit on my shoulder bag and cling to me like a baby koala.  The pain was out of this world.  Lucky she was light.

I had 2 different doctors on 2 different islands tell me I was a 'medical mystery'.  One gave me a Rx for extra-strength vicodin (I didn't know it came in extra strength either!) the other game me Rx for gabapentin.

I did craniosacral, acupuncture, rolfing, dieting, creams, vitamins, stretches, praying, MRI's, X-rays, and lots and lots of research.

I lived in Hawaii but I couldn't do anything.  Even when I made myself, I could barely enjoy it.
I was depressed.  I wish I would have taken something for that.  I think even the docs on Maui could have given me something to help with the depression.

I went through all the classic stages of grief, some took a long time, some not as long and I finally accepted the pain as part of my life.  I knew I would never run, climb, surf, play like I used to but it was okay.  I learned to sew and do a few other little crafts and I tried to find some other talents or interests to pursue.

 I am still not where I was before I had Lily.  I don't expect I ever will be.  I still have pain as a constant companion but he usually remembers to use his inside voice these days.  I have learned how to keep him quieter and I have learned to live my life with him as a cameo rather than a director.  I don't think that because I am running a marathon in 3 days it makes my past experience any less real.  I honestly believed, no I KNEW, I would never feel this good, and coming to that acceptance is the hardest thing I ever did.


A little note on running. . .even though no one cares. . .

I have been reading some running blogs lately and they often refer to runs as 'good' or 'bad' depending on a lot of factors like time, how they felt in general, speed, etc.  Sometimes I want to laugh, sometimes I want to roll my eyes and sometimes I want to shake them depending on a lot of factors on my part.  Mostly, though, I just count myself lucky because while I have had blood blisters, joint pain, sore muscles, seriously slow times and even thrown up along the way, I don't think I have ever had a bad run.


***Please note that I use the word 'run' is a very generous adjective for what I do when I lace up my Saucony's.  


I should also note that it is only because of the sincere caring and brilliant mind of Dr. Vonk coupled with fairly strong weekly injection (yeah for me!) and a daily pill along with a strict gluten-free diet (and a string of other small habits, I will list if anyone cares) that I am able to perform my life at the level that I do now.  My disease never went away, and it never will and because of that I am grateful that I had to accept it at it's worst.  I know it could go there again.  In fact, I am told it is likely that it will at some point.  But that is okay.  I have already accepted that full bore pain.  I have already accepted not doing all the physical things I love.  Any day that I CAN do those things is just a bonus.  I have a strange feeling this super good attitude might go out the window and I will have to repeat the whole 'acceptance' process again if things ever get really bad again.  I guess we will have to see.

Five Things

Day Five is "list five things that make you happiest right now".

1.  Good Food.  I love food.  Good food.  If I had more money I would classify myself as a 'foodie'.  I think about food all of the time.  During breakfast I think about what I am going to eat for lunch.  I love different food, new food, fine food, food in a box and with a fox and all of that.  My friend's birthday was yesterday.  We met at the park for lunch.  She bought lunch for everyone.  So did I.  We easily had $60-$70 worth of food at the park for 3 adult women (we brought snacks for the kids but the taragon shrimp, sweet potato and grapefruit salad was all ours! )  and we ate it all.  Seriously.  It started raining and gusty gales blew through freezing us and threatening our styrofoam encased treasures, but we stayed.  We stayed until the food was gone.  It wasn't even a question.

It was my favorite birthday of all time.  And it wasn't even mine.


2.  Kids.  My typical day consists of waking up early, being tired, not wanting to clean up for preschool, battling through, then during preschool finding this surge of energy and elation and calm all at the same time.  Those kids save me.  Yes, I spend a lot of nights watching reruns of Scrubs while cutting cardboard in my bed.  Yes, I always have paint under my fingernails.  Yes, the ratio of carpet to glitter has shifted to the latter.  But, I love it.  I love those kids.  I love babies.  I love my kids.  My babies.  They make me laugh everyday and cry a lot of them too.  Now that the weather is warm I love that the neighborhood kids congregate in my front yard while the mom's chat.  I love that they all call me Miss Meg.  I love that people call me to watch their kids.  I am grateful that they trust me.  Kids make me happy.
There is a little kindergarten boy with bright red hair who is not even in Lily's class who says 'hi' to me every morning "Hi Lily's mom!" he shouts.  If I don't answer right away he says "It's me, PRESTON!"  I have no idea who this kid is or how he knows me or my daughter but I love seeing him every morning.

3.  Running.
I realize that living in Utah it is a little cliche to love running.  Everyone is doing it.  Ragnar blah blah and all that.  But for me, it is a miracle.  I remember only 5 years ago not being able to walk down to my mailbox.  I remember laying around all day in intense pain.  I remember taking a stroller into church to use like a walker.  I laid in bed writing in pain, freezing because even the pressure of a sheet on my skin sent me through the roof.  I know I am not the only one with chronic pain.  I know that there are many, many people with far worse situations than mine.  But I also know that fact doesn't lessen my own experience.  To have come from cortisone and knee draining and vicodin to two weeks away from completing a marathon?  That is huge for me.  It is a miracle.  I owe my current life and well-being to many but mostly to Dr. Vonk.  He didn't think I was crazy, he didn't write me off with a scrip for narcotics.  He took the time (hours on the phone and in the office) and he figured it out.  I know I am not healed.  I still have pain.  I may have a flare again that is just as bad as before.  I know this.  But the question was 'what makes you happy right now' and the answer to that is 'I can run'.  I am not fast or pretty but I can do it and it feels good and that makes me so so happy (even at 4 am, which is often the only time I can go!)

I tried not to make my marathon too big of a deal.  I haven't even told too many people 'in my real life' that i am doing it.  But if I was to be honest.  It is a big deal.  Not in the grand scheme.  Tons of people have run marathons and longer distances and have done it much better than I ever could.  But to  me, in my life,  it is huge.  I had written off exercise completely.  Now I will run a freaking marathon and I am not ashamed to say I will be an emotional wreck at the end.  Probably because I had peed on myself and thrown up and my thighs had ignited a small fire between them, but also because of what the whole thing means.

4.  TV time.  I realize this makes me sound like a slob.  I am just being honest.  I look forward everyday to that time when I climb into bed to cuddle, cut construction paper houses, or even close my eyes and put on one of my favorite TV shows.  I live a full life.  I am busy.  I wake up at 4 am more often than not and go steady all day long.  At the end of the day (which is earlier for me than most.  I am NOT a night owl) I don't feel guilty about vegging a little to the sounds of a funny or interesting show.

5.  I know I already mentioned food but I really love it so much that I am using number five as a subcategory.
What makes me happy right now?  New cafes opening in my town.  We have had several open up in the past few months with the refab of main street.  None have been ones I would frequent (gluten heavy) but it still makes me happy to have food available to the masses.  Seriously, I am obsessed.  But then, last week, I noticed a little cafe tucked between a quilting shop and a gift shop.  I crept in with Noli to do a recon.  Gluten-free tamales?  check.  Flourless chocolate cake?  Yes.  Live music venue for local musicians?  WHAT!  FINALLY!  Ever since moving here Chris and I have lamented that there is no live music/cafe in town.  I gushed and gushed at the owner (young peruvian guy who probably thought I was hitting on him) and then yesterday (birthday picnic) I called and ordered almost everything off of the menu.  When I went to pick it up the owner says "Oh!  I remember you!" but he was smiling and I had a huge order so I think it was in a good way.

Adding a sixth. . .

Noli getting herself dressed right now.  She just came out of her room (I should write these at night) wearing (i am not exaggerating):  shorts with jammy pants ON TOP, two t-shirts topped with a sundress on backwards.  Nice.  That makes me happy.



This is a picture of me training for my marathon (in my mind's eye. . .with long hair. . .when I am black).

Day 4 So appropriate for my mood, today.

It turns out Day Four is

List Five Things You Would Tell Your 16 Year Old Self

Ha ha. . .since i am feeling about 14 today. . .this is perfect.

1.  It is okay to like your own thing.  This goes for music, art, books, boys, friends and movies.  I was a follower, which is not bad, but it didn't really let me be me.  It took me several years into college before I really started forming original opinions about things.

2.  Take every opportunity to try something new.

3.  Keep trying even if it is hard.  I tend to not keep working at something if I don't see at least a glimmer of beginner's luck.  Even now.

4.  Be more involved with your siblings.  You will regret not being a better sister.

5.  Help your mom more.  Be nice to her.  You are not smarter than she is.  Seriously.

Going off-script

It was a tough day at the races.

You need thick skin to work with teens.

Erin, and any other high school teacher who may stumble upon this, my hat goes off to you (again, and for so many reasons).

How is it that someone so young can fill me with self-doubt even though I know I am giving all I can and putting forth all I have?

Yeeesh, I feel like I am back in seventh grade.  It is just as bad this time around.

Day 3 The Most Physical Pain of Your Life

I realize that my "days" are a bit longer than most.  But, in my world. . .at least on my blog. . .my "days" are as I set them to be.  And that often varies.

The most physical pain I have ever been in.  This was easy.  12 hours of pitocin induced labor with NO pain killers.  The nurse then telling me "I can call you a 1.5 if that makes you feel better".  It didn't.

One week overdue with my first child and unable to progress through labor left me feeling a little inadequate as a birthing mother.  I had thought I would rock it in the birthing department.  I thought I could handle the pain.  It didn't bother me that Maui did not offer epidurals.  I liked it.  I thought it would be awesome.  Truthfully, though, it came to a point where I was ready to accept the morphine injection regardless of any side effects to me or my child.  I was delirious with pain.  Even as I type this my back is clenching.  There was no breathing like TV, no mantras, not even any screaming.  I could not even dedicate energy to scream, I was in too much pain.  The immediate pain relief that came with the spinal block necessary for my emergency C-section was so shocking I began shaking uncontrollably.  The nurse had to strap my arms down during the surgery (which is nothing like TV, either.  Bright lights, green tile, chatting about lunch, John Mayer playing. . .)  I was so 'high' from the adrenaline, the experience, the meds, all of it, I did not sleep for the next 24 hours.  The nurses kept telling me to sleep but I was WIDE awake.

Fears

Day 2 (ish)

Three Fears

1.  Ruining my kids.  Either by my death or by my shortcomings, the fear is the same:  my kids suffer because of me.   Every time I roll my eyes, use passive-aggressive parenting or sigh in that cruel way I do when I am hungry. . .I realize this fear.
I am ashamed to admit, I ignored my daughter's plea for help until it got frantic while i typed the previous two sentences.   See?  My fear is legitimate.

2.  Crocs.  I know I didn't have to include an animal fear, but this is real.  Of course sharks are scary in that "I am paddling out and I saw a fin in the wave so I am going to make a quick 180 out of here even though it is probably a harmless one" kind of way, but crocs are scary all the time.  Even in Utah.  I am not sure why, but I think it has something to do with my perception of their intelligence.  Sharks, cougars and other scary predators seem pretty smart.  I mean, sure they will eat you if they are desperate or if you are bleeding, but most of the time I think they are pretty much just hanging out waiting for something more their style.  I feel like crocodiles will just barrel roll you because they don't know you from a 150 lb pile of bratwurst.  They stupid.  That why they scaaaaaarrrrry.

3.  Offending people.  After inadvertently offending several roommates in college (I am sure it happened all the time before I was just unaware of it) I realized that I say or do things that are taken the wrong way.  I can be callous without knowing it.  I am a narcissist and I don't realize that the way I say things are not always kind.  I know this now and am so over-conscious of it now that I am constantly over-analyzing every conversation I ever have and pinpointing every time I probably offended someone with my filter-less lip.  I lose sleep.  It is horrible.  You would think that my over-analysis would cure me of the core problem.  You would think.

For Erin

I got a text from a dear friend this weekend that said "you haven't blogged for over a year, you know".  I do know.  I just am busy.  And sort of boring.  It is hard to know what to write when you are busy, boring and not certain anyone cares about your blog.

But Erin does care.

So this is for Erin.

I have some very talented cousins who keep amazingly interesting and well-written blogs who have been doing a 30 day writing challenge.  Because of my aforementioned plights of being both boring and busy I have neither the time nor talent to come up with anything original to write.  At least my answers will be different (until I get really lazy and start copy and pasting their New Yorker worthy answers into my own blog. . .).

Day 1 (we will see how long this lasts. . .)

Ten Random Facts About Yourself

1.  I hate chicken pot pie.  It is really the only food I hate.  I actually really love food.  Good food.  I really hate chicken pot pie.

2.  I love to try new things.  Anything new.  I rarely stick with anything long-term but I am always up for a new experience.

3.  I love being outside.  Doing anything.

4.  I am not good at keeping my house tidy.  I wish I were.  I think this is tied heavily to #3.

5.  I get mean when I am hungry.  Someone once described the emotion as Hangry.  I loved that.

6.  I love having kids over.  All kids.  Almost any kids.  I love to teach, play, get messy and snuggle them.  Bring your kids over. . .my house will not be clean but I will have snacks.

7.  I do not like movies.  There are very few movies that I think were worth watching (for me).  I have some favorite TV shows that I will watch over and over but compared to most people, I don't like very many movies.  In the past 4 years I have been to the theater 5 times (Fantastic Mr. Fox, Harry Potter 7 part 1, Sherlock Holmes, Sherlock 2, Hunger Games).  I do love plays and have seen almost all of the local high school productions (and some professional)  since I have been in Utah.
Incidentally, my least favorite movies are super-hero or comic book adaptations and war movies.  Imagine my reaction when my husband put on Captain America one night promising me that 'you will really like this one. . .'  Hmmm. . .can't we just watch Scrubs again?

8.  I love words.  I love books with beautifully written sentences and new words.  I like knowing where words come from.  I love playing scrabble (even though I am not good.  At all.) and I love teaching my kids new words.  There is power in an expertly turned sentence.

9.  I often come upon jobs or opportunities by accident.  For instance:
9a.  I was recruited to the University pole vaulting team when the captain saw me diving at the pool.  I was very enthusiastic and couldn't wait to try.  It turns out I couldn't run fast enough to generate the speed needed to vault me over. . .anything.  
9b.  While searching for jobs for my siblings online one day (because I am nosey like that) I came across an ad that read something like "Need writer for my art book.  Not interested in your past publications or resume.  I will send you art.  You write snarky, Far Side-like caption.  I will pick the best one for job.  Cat lover a plus."   Seriously.  I submitted my entry along with 20-30 others and was hired to caption 85 paintings for a Japanese artist.  I am now working on book 3 for him.
9c.  I started exercising with a woman.  She signed up to run a marathon.  "I will just run with you until you start going over 8 miles" I said.  Then one day I ran 10 with her.  "I will just run with you until I don't want to and will walk and you can leave  me."  I never walked.  We just kept on running.  Then, one day she was joking with some people that I was training for an imaginary marathon.  One of the ladies said she had entered the Ogden race but didn't train over the winter.  I bought her entry for a fraction of the price (those things are PRICEY!  Who knew??? ) and now find myself running an accidental marathon in 3 weeks.  I figure with my health I may never be at this level of fitness again and I most certainly will never be able to run a race this cheap again.

10.  I can whistle on a straw louder than anyone I have ever met.  Drinking straw.  Ear-splitting.  I will show you sometime.