Wednesday, September 29, 2010

Today I met a man

His name is Steve.

Born with cancer, Steve's leg had to be removed at the hip two days after birth.

Steve knows what it's like to be a child with a missing limb.

Steve also knows how difficult and expensive it can be for these children to get a good prosthetic.

So Steve is walking for these children.

He is walking from Salt Lake City to Saint George, UT (that's 365 miles, for those of you counting) and he's doing it on crutches!

He is walking to raise money to help cover the costs of prosthetics for children and to show amputees that while losing a limb is definitely challenging, it doesn't have to be disabling.

Maybe it's because I've recently experienced what it's like to lose the use of a limb (thank goodness my loss is only temporary)...

Maybe it's because I know what it's like to fight for a cause you believe in...

Maybe it's because I was so incredibly touched by this amazing man who is "Walking For Kids Who Can't"...

Maybe it's because I felt indebted to him personally for the Humble Pie and tall glass of Inspiration he'd just served me...

Whatever the reason, I HAD to donate. I really didn't have a choice. I probably donated more than I can afford to right now, but in the end I'd regret it if I hadn't. I am so happy to have had the opportunity to meet Steve today and I can certainly tell you that I am done making excuses for myself - I am getting back into my walking routine TONIGHT!

Walk, Steve, walk!
I am so grateful and truly honored to have been a even a tiny part of your incredible journey!


If you'd like to learn more about Steve Wahlquist, please visit his website Walk Steve Walk or check out his blog here.  

Wednesday, September 22, 2010

My energy account


For an awesome analogy about living with chronic illness, please read The Spoon Theory  by Christine Miserandino over at butyoudontlooksick.com

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"Why don't you ever hang out anymore?"

"What do you mean you're too tired to cook dinner?"

"But you don't look sick."

I find myself having to answer these questions more and more as time goes on. It's hard to tell your friends or family that you need to stay home, especially when what they've invited you to do sounds like it'd be a total blast. It's hard to turn down the simplest church calling because you're plate is already full with every day tasks - and even then, sometimes you can't seem to accomplish everything you intend to. It's hard to tell your co-workers that your medication upset your stomach and you need to go lay down in the break room for a few minutes.

It's difficult to explain how exhausted, frail, or sick you feel when you appear to be just fine; when you look so... normal. For the most part, cystic fibrosis is an invisible disease. I've seen some who, even in the very end stages of their fight, appear to be just fine.

My husband has been to countless doctor visits with me, has spent time with me in the hospital, has gotten tangled in my oxygen tubing when I'm wearing it at night, helps me prepare and sterilize my nebulizers, watches me spend two hours a day doing breathing treatments, knows how many pills I take, and has gotten used to waiting with me while I catch my breath after walking across a parking lot. He lives with me and my CF every single day, but he still doesn't know exactly how I'm feeling unless I tell him.

So, here is how I've started trying to explain things to those who ask questions:

We all have an energy bank account. My account, much like that of anyone living with chronic illness, functions on a fairly low balance. (A doctor once told me it is estimated that the extra work it takes for someone with CF to breathe - to simply exist - increases their energy requirement to about 10% more than that of a healthy person.)

Balancing this energy account is much like balancing a checkbook. Over the years (and especially during the last 10 months or so) I've learned how much I can expect to pay for certain things, which things are necessary and which ones are luxuries. Every day, all day long, I keep a mental register of my transactions.

Some of the everyday things:
Waking up and rolling out of bed - minus $1.00
The five or ten minute coughing fit that usually follows - minus $2.00
Showering and getting myself ready - minus $2.00
Caring for a thirteen month old - minus $20.00 (give or take $5.00, depending on the day)  
Breathing treatments - minus $4.00 (keeping in mind that if I skip them my account will be overdrawn by the end of the day)
Going to work - minus $10.00
Making dinner - minus $2.00
Washing dishes - minus $2.00
Folding laundry - minus $3.00

Some of the fun things:
Visiting family members- minus $3.00
Meeting friends for dinner - minus $3.00
Spending an afternoon at the mall - minus $6.00
Going to the museum, zoo, ball game, etc. - minus $5.00

Some other things I must consider:
Fighting a lung infection - minus $12.00
Running a fever - minus $10.00
Sinus pain - minus $5.00
Shortness of breath - minus $8.00
Increased cough/coughing fits - minus $3.00 (give or take $1.00, depending on the severity)
Chest tightness/pain - minus $4.00

Everything costs something, nothing is free. Sometimes what seems like the better option (grabbing fast food for dinner- minus $1.00 vs taking the time to make a decent dinner - minus $2.00) actually ends up costing me more in the long run (forgetting to take enzymes with the fast food, suffering from an upset stomach for the rest of the night - minus $4.00) so it's very important to think everything through. I have to wake up each morning, determine my energy balance for the day, then make a plan from there. Some days I can afford a few luxury items, other days I can barely afford the necessities. And when my account balance reaches zero, I'm done. It doesn't matter if there are dirty dishes stacked in the kitchen sink, multiple loads of laundry on the couch begging to be folded or friends I'd like to go visit. I simply can't afford everything, so I MUST prioritize. As Christina says in her spoon theory, "When other people can simply do things, I have to attack it and make a plan like I am strategizing a war."

So, if I choose to stay home instead of joining you in some fun activity, if you come to my house and it's a disaster again, if my child is in dire need of a bath and a change of clothes, or if you find that you always have to come to my house and I never seem to make it to yours, please don't take it personally or judge me too harshly. Chances are that my energy account has been drained for the day and I simply can't afford anything else.

Or maybe, just maybe, I have a tiny balance left over and I'm stashing it away into savings so I can be sure to join you the next time you ask.

Saturday, September 18, 2010

"The bird war, the bird attack, plague - call it what you like."


When I was in the ninth grade, we watched Alfred Hitchcock's The Birds. I'm not sure what the connection was between a movie about birds taking over the world and freshmen English class, but I'm sure my teacher had a valid reason for showing the movie. Unfortunately, whatever message she wanted it to convey was lost somewhere among all the stifled laughter and insulting comments from my classmates (I would never do such a thing). I suppose the movie just didn't seem quite as terrifying or cutting-edge to a bunch of 14-15 year old kids in the year 2000 as it did to the American population when it was released in 1963. It did, however, remind me of a story my family tells about an old, homeless-looking man we once encountered at a Wienerschnitzel. He was feeding the pigeons that had flocked to his side and advised us to do the same because "one day, pigeons might rule the world."

Screwy old man.

-----------------

Last week, Adam and I came home to find a single pigeon sitting on our roof. Pigeons aren't extremely common in this area, so we both found it interesting that this cute little guy had chosen our house as his new perch.

Before we knew it, our pigeon had a friend. And there they were three. Three completely harmless and kinda cute little pigeons just hangin' out.



We began noticing that each time we went outside, there was another one. There were four when I ran a diaper out the the garbage can, then six when Adam went to lock up the cars for the night. As we sat there watching, every few minutes another pigeon's head would pop up, seemingly out of nowhere. The mysterious pigeons were odd indeed, but rather entertaining to watch.



A couple days after the first pigeon appeared, Morgan and I were playing outside in the yard. I happened to look up at our little pigeon community (that had now reached a population of ten) and I noticed that every single one of them was watching Morgan attentively. It reminded me of a nature show on the Discovery channel where the lioness and her cubs lie waiting in the weeds, crouched down, watching a herd of zebras in the distance, trying to pick out the smallest and most vulnerable target.


Keeping my eye on the increasingly ugly pigeons, I scooped Morgan up and slowly started walking towards the house. That's when the biggest, fattest black pigeon - whom we had cleverly started calling Big Fat Black Pigeon - swooped down off the roof and flew directly over my head. I'm pretty sure I caught a glimpse of bared fangs as I ran into the house screaming.



Each time I look at these not-at-all-cute creatures, I get the feeling that they're plotting something. Adam insisted that I was just being over dramatic -- that they weren't that creepy -- until he saw The Pigeons at night.  


He now agrees that Big Fat Black Pigeon is most likely the devil.



We aren't sure what to do about our demon pigeon infestation. We've tried spraying them with a high powered hose nozzle, throwing rocks at them, and we've even done a little target practice with Adam's pellet gun. No matter what we do, the hideous things keep coming back... usually with another side-kick in tow! On Monday we are calling the city to see if they can help rid us of this feathered pestilence before The Pigeons have a chance to execute their plan for world domination.

That is, of course, if we make it through the weekend. I suppose if you don't hear from me again, you'll know what happened.  



------------------

I'm beginning to believe that old man may not have been as dilusional as we thought.

Thursday, September 16, 2010

Wake up call (or text)

At 5:43 this morning I was awakened by an incoming text message from my sister that read:


Just letting you know I thought about you as we just passed the vacuum cleaner factory outlet and museum.

The only thing I can think of that would have made that message better is if she had attached pictures for me to swoon over.

Tuesday, September 14, 2010

When a little "crazy" comes in handy

I have a tendency to be a bit obsessive.

My husband prefers to use the term "crazy" (this coming from the man whose greatest wish as a child was to own a pet maggot) while I prefer the term "passionate" (it just sounds less... well, less crazy).

For instance, I'm passionate about vacuums. The very act of vacuuming is therapeutic for me; the steady back and forth motion, the fresh vacuum lines that appear on the carpet, the fact that all other noise is completely drowned out and everything else in the world goes away while I focus on this one thing for a few minutes. And don't even get me started on the high I get when I empty all that dirt out of the canister and realize that it's no longer in my carpet. Who needs cocaine when you've got dirt in a bucket?

Since I love to vacuum so much, it just makes sense that I also love vacuums. I currently own three of them, which is something that my husband never fails to use as ammunition in the Who's Crazier war. Which is okay because I still have that time the cops showed up to your parents house during a Father's day celebration because your dad and brother were blowing stuff up again in my arsenal for when we get into Whose Family is Crazier.

What he just doesn't understand is that I NEED each of these vacuums. Not only do I develop an emotional attachment to them after a while, but they each have a specific job they are assigned to do that none of the other vacuums do quite as well. The blue one reaches deep into the grooves of the couch and the edges where the carpet meets the wall, the yellow one has the pet hair attachment and the telescoping, self cleaning duster while the pink one is best at getting the dirt hiding deep under the surface of the carpet.

Plus, a pink vacuum? That's just good sense; every woman should own one.

The obsessions don't end there. In fact, often what I obsess over isn't an actual item, but more of an idea. Like the time Dixie went missing for three hours and I was just so sure that we'd eventually find her dead, limp body lying in the street and all I could think about for the entire three hours was how I would never, ever get over the trauma of seeing her that way. Turns out that she had just followed me into the bedroom and I'd accidentally locked her in there when I'd left the room. I also tend to think that everyone has Cystic Fibrosis and have actually been known to lick the neighborhood kids to see if they have the classic, salty CF taste to their skin. Then there are all those times that I've watched a TV commercial and been totally convinced that I have the condition, disease and/or adverse side effects of whatever it is they are advertising. More than once, Adam has had to hold a hysterical me in his arms, run his fingers through my hair and console me by gently saying something like "Honey, I'm almost positive you aren't suffering from an enlarged prostate."

So you can imagine his skepticism when, last week, he greeted me with a friendly hello followed by a quick kiss and I simply said "I think you have a disease."

But here's the thing: I don't think I'm being ridiculous... this time.

I won't go into the details right now, mostly for Adam's privacy (see, I really do have boundaries) but I will say that he has suffered from some very strange and often painful symptoms his entire life, and they have never been explained. In researching this particular disease, I'm finding that EVERY SINGLE ONE of his symptoms could be explained by it. But since I may have gone a teeny bit overboard with similar things in the past, he's having a hard time taking me seriously. The more we talk about it the more he is starting to see my point, but we are now entering the battlefield known as Convincing My Husband To See a Doctor which means that things might get a little ugly 'round these here parts.

While it may be true that I take the trophy when it comes to "crazy", when it comes to "stubborn" he may just have me beat. And there's just no telling what can happen when those two traits collide.

Consider this your fair warning.

Saturday, September 11, 2010

September 2010 Newsletter: 13 months

Dear Morgan,

Today you turn thirteen months old. That means that your dad and I only have two hundred and three months left until we can start charging you rent. Maybe then you can finally pay us back for all the phone chargers we've had to replace due to your sucking on them. In related news: we've finally discovered where you're getting all your energy. We've joked about you secretly plugging yourself in to some unknown energy source, but until recently, we had no idea it was actually true.


Morgan, my dear, this month you've perfected something I like to call PUSHING MOMMY'S BUTTONS. I hear parents talking about The Terrible Two's, and I can't help but wonder what happens when your child has been acting like a Terrible Two since before her first birthday. Does this mean you'll be an incredibly well behaved two-year-old because all the defiance will be out of your system? Or does it mean that I've been given a preview of what's to come and I might as well ship you off to Grandma's and start shopping around for a good institution now? Because I don't want it to be a last minute decision, you know. If I'm going to be committed, I want to be sure it's a nice place where there's a masseuse on staff, they'll let me eat pudding in bed, and the doctor will be sure to concoct a dynamic cocktail of meds just for me.


This month, I've constantly been amazed by your uncanny ability to open things. Especially things that shouldn't be opened or that have been locked shut with the specific intent of KEEPING YOU OUT. You are a mastermind when it comes to getting things opened: cupboards, drawers, DVD cases, bottles, baby food jars, packages of gum, ziplock baggies. Although this talent of yours is usually one of those things that drives me absolutely crazy, the other day when I was struggling to open a jar of jam, I found myself silently wishing you would wake up from your nap and come help me. That's how it goes around here: one minute you're making me insane with all the weird little things you do like taking off your diaper and running through the house naked or tearing through the freshly folded laundry looking for who knows what! But later that same day I find myself thinking what I wouldn't give to see you walking around with my camera slung over your shoulder like a purse, a pair of your sister's underwear on your head, holding a hairbrush to your ear saying "Hi! Mom! Hi!".


You inherited your dad's love of all things outdoors and love spending time with him out in the yard. You also inherited your mom's love of music and dance. (Although, as I've already explained, our affinity for these things does not mean we have the ability to do them well, unfortunately.) Last Saturday, we spent a great deal of the afternoon simultaneously watching and dancing to  Billie JeanDancing at the Movies and Evolution of Dance over and over. Each time a clip would end, you would point at the computer screen and clap for more. Little things like this make me so incredibly happy and grateful to be your mom. While you are very much your own soul, I see parts of mine and your dad's personalities coming out more and more as you grow and I just couldn't be more proud of what we've created.


Right now as I sit here typing this, I'm watching you and Shylee playing on the living room floor together. You just threw yourself into her arms and are now lying on top of her giving her kisses. You adore your big sister and watching the two of you together is nothing short of magical. I've worried at times that I may not be able to give you more siblings. I always wanted a big family, but at this point in my life, I'm not sure it's something my health will allow. Sometimes I'm okay with that, other times it breaks my heart. But when I see you and Shylee laughing and playing together so well, all those worries and concerns just go away. You already have a sister - someone to laugh with, to get dressed up for dances with, to argue with, to stay up late playing silly games with, to call up years from now and talk about the crazy thing your mom did this time. And she'll know exactly what you mean, because she's been there too. You made me a mother, Morgan, but I have to credit Shylee for showing me that the instinct was there all along. Your sister will be one of the most important people in your life, just as she has been in mine. I hope you always treasure your relationship with her and that years from now you're still tackling her to the ground to give her kisses.

 

That's another thing I love about you right now - you love so freely! You are very affectionate and, might I say, even passionate at times. It's not uncommon for you to grab my face firmly with both hands, pull me to you and give me a long, noisy kiss. I'm often awakened in the morning by you giving me sleepy, sloppy, lovey kisses like this. You are also a hugger and have recently started giving the back pat when you give hugs. What surprises me most about your affection, is that you know how to express it properly. For instance, when you see your baby cousin Ryan, you softly pat his back and head, then gently kiss him; when your dad is holding you, your kisses are playful and happy; and it is only me - who I like to believe you love the most - that gets your passionate kisses. I'm so proud that you know how to love. It lets me know that you feel loved and that you recognize what love is.


And that tells me that maybe... just maybe... we're doing something right.

Love,
Mama

Wednesday, September 8, 2010

A lil' guessing game


Can you guess which leg has been immobilized for the past month and a half?

Tuesday, September 7, 2010

Who knew doctors blush, too?

Behold, the boot:


I had a dream last night that rather than cutting my cast off today, the doctor simply wrapped another layer of fiberglass casting tape on my leg and told me to come back in three weeks. What upset me the most about this was not that I'd still have to be in a cast, or even that he wanted to schedule my appointment three weeks out (which would be the longest I've gone without seeing him). No, the part that upset me the most was that my cast was red and he used a yellow roll on top of it. One roll isn't enough to cover the entire cast, so there were huge pieces of red poking through the yellow. My cast looked like it had been modge-podged with clashing colors. Did he really expect me to go three weeks with a cast that DIDN'T MATCH??? How could he even suggest such a thing?

(Thanks, Mom, for that little personality quirk. Also, we can both rest easy tonight knowing that I finally got around to rearranging all the children's books in the girls' room according to size.)

Fortunately, the first thing my doctor said when he saw me was, "It's graduation day! Let's get you out of that cast and into a walking boot!"

I wasn't absolutely positive that he was serious until we walked into the procedure room and there wasn't a single roll of yellow tape to be seen. After he cut the cast off and inspected the surgery site, he told me to try to flex my ankle just a little. I anticipated a lot of pain, but you guys, it felt SO GOOD to move that foot! Sure it hurt a little, but it was that good kind of hurt. Like when you're really tense and your husband gives you a back massage and you start shouting things like "Ow! That's the spot! Ouch baby, don't stop!" And you don't even care what the neighbors think because it just hurts so good!

I was so excited that as soon as the boot was on and he gave me the go-ahead to stand up, I tried to do so without the help of my crutches. I'm sure you can imagine what happened when, after six weeks of bearing absolutely no weight, I attempted to put all my weight on that leg. Let's just say that it's a very good thing I'm not easily embarrassed, because although my doctor grabbed me by the arm and picked my body up off the tile floor, I'm pretty sure that every last shred of my dignity is still sitting on that floor in a pile.

Needless to say, I'm not quite ready to be walking unassisted. I'll have to use the crutches for a few more days as my body re-learns how to move and bear weight. I firmly believe that talking to my tendon will help this process, so all day I've been saying things like "It's okay, little guy. You're doing great! Look at how much weight I'm putting on you. You're doing an awesome job!"

I told you: NO DIGNITY.

My doctor assured me that the muscle I lost will return pretty quickly once I begin using that leg more. I asked him if that included the muscle in my butt, then went on to explain how I'd never noticed how much your butt works when you walk, but since I haven't been walking, I've lost a lot of butt-muscle! And on top of that, I've recently been struggling to maintain my weight. In fact, I'm losing it from places I'd like to keep it. Why is it that when I lose weight it comes from the places I'd really don't mind having a little some'n-some'n, like my butt and my boobs?

And when I heard the words "boobs" come out of my mouth, I suddenly realized that I'd said too much.

He doesn't care. In fact, I'm sure he'd rather NOT know anything about my boobs or my butt (or rather, my lack of butt). He is a FOOT doctor, for cryin' out loud! Not only that, but he's a professional. A male professional. I know there's something in your head that, once you start approaching the line between appropriate and inappropriate, tells you to STOP TALKING. Apparently my achilles tendon is not the only thing in my body that has been disabled...

Ugh! I can just see it now; my first brush with the tabloids: LAWNMOWER GIRL SEXUALLY HARASSES DOCTOR!

Sunday, September 5, 2010

Because if it's possible, it'll happen to me

I've been wanting to post for a few days, but Morgan and I have been fighting a raging cold/flu bug (I can never tell the difference - both make me achy, feverish, tired, and nauseated) so I haven't had much energy to write. I'm a little frustrated that I started feeling crappy 3 DAYS after I finished IV's... but WHATEVER! I'm happy to say that we are both feeling much better now. However, I stayed up way too late last night talking with some friends so I'm not much for energy today either, which means this post should be pretty short and sweet.

Earlier this week, I took Morgan in for her one year well-child check-up (a little late, I know). I'd mentioned previously that I'd been concerned about the amount of CF testing we'd had done on Adam, and possible symptoms that Morgan has shown. (I won't go into detail here, but I did here if you want to take a look.) Well, we finally got a look at the results of Morgan's newborn screening, and it was a big fat NEGATIVE! It is my understanding that this is an extremely sensitive test, and quite often comes back irregular if the child is simply a carrier (which, of course, Morgan is). Since it didn't pick up any irregularities at all, I feel like a weight has been lifted from my shoulders and I can stop worrying about it... for now.

It's very likely that in the future, I'll question the accuracy of that particular test. Maybe their equipment wasn't working exactly right that day. Or maybe hers got mixed up with that of another baby. Because that's what I do: I worry. When I was pregnant, I went through a phase where I was absolutely certain that the lunch meat I had eaten was going to cause me to give birth to a hermaphrodite baby with no ears. It's insane, I know. But can you blame me for worrying about the bizarre? I mean, I am the woman who - six weeks ago, today - was walking out of a Home Depot thinking only of how excited I was to get home and wear those super cute black high heel shoes I'd purchased just minutes before, and ended up in the emergency room with a major tendon severed completely in two at the hands of my husband and his lawnmower.

I still haven't worn those shoes, by the way.

Wednesday, September 1, 2010

Star status


I once heard a DJ from my smalltown country radio station refer to himself as a "local celebrity". I'm actually fortunate enough to have brushed hands with him a few times over the years -- while handing his food through the drive-up window when I worked at a fast food joint in high school and now, while exchanging money at my current place of employment. As if that's not enough to make a girl's heart go pitter patter, last month when Adam and I went to the movies we had the pleasure of seeing a boy from my class who went on to join the NFL and while standing in line for concessions, I accidentally bumped elbows with one of the Osmond brothers!

I know, right? Please try to restrain your jealousy.

Well my friends, long gone are the days of my starstruck wonder, because in a crazy turn of events, I too, have become a bit of a "local celebrity". Ladies and gentlemen, please give it up for The Lawnmower Girl!

Apparently over the past few weeks, my story has spread like wildfire. One day, at the grocery store, the teenage cashier asked what happened to my foot. I had barely uttered five whole words when he interrupted me by saying, "Wait, are you that girl who got hit by a lawnmower?" When I nodded my head, he turned to his coworker and said excitedly, "Hey Kara! SHE'S The Lawnmower Girl!" and before I knew it I was surrounded by people, young and old, asking me all sorts of questions and looking at my cast with awe, as if it were dipped in gold and bedazzled with rubies.

People stop me at Wal Mart, the post office, while I'm putting gas in my car -- literally everywhere I go -- always with some sort of commentary about Home Depot, lawn mowers, my crutches or my cast. This week alone, I can't even count the number of people who have come into my work and said something along the lines of "You're that Lawnmower Girl, aren't you? I've heard about you." A high school boy even asked if he could take a picture of my foot once I get my cast off. I told him for a small fee we may be able to work something out.

Before you know it, I'll be running over paparazzi in my drive way and having to file restraining orders against the crazies I've found peeking through my windows. And who knows... maybe soon, rather than accidentally rubbing elbows with an Osmond, I'll invite them out to lunch. You know, just a friendly meal amongst peers.

Then after lunch, we'll head over to Johnny Depp's yacht for drinks.

And just think, years from now when you're reading my name in lights, you'll be able to say that you knew me way back when...