Month: October 2017

Lithotripsy Semi-truck

~ Amelia ~ 2 Comments

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“The Crohn’s is probably enough.”

A kind and sympathetic nurse conversed with me in (a semi truck)* lithotripsy procedure while my doctor figured out the best way to blast my sneaky large kidney stones. This nurse was right. The Crohn’s disease is probably enough. The extra specialists that I have added over the years sometimes feel like too much. The Crohn’s makes me prone to lung problems. The Crohn’s makes me prone to kidney stones. The Crohn’s depletes me physically yet somehow continues to recharge me emotionally and spiritually.

The Crohn’s also makes me prone to seeing the raw beauty amidst the unfair pain. The Crohn’s makes me more prone to routine feelings of overwhelming love and gratefulness for my concrete support system. The Crohn’s makes me prone to testing my faith and wearing my emotions on the outside, along with my bag. The Crohn’s makes me prone to being authentically myself because it’s too exhausting on my already-tired body to fake my way through life.

One of my boys worried about the medicine they would give me for my lithotripsy procedure. A few weeks ago, he wanted to learn how to do the moonwalk. We watched videos, listened to songs and talked about Michael Jackson’s life. Which also lead to a conversation on how he died. And so a week later, my son asked this question after he made this connection all by himself  (kids are so damn smart)

“Mama, will you get the same medicine Michael Jackson got?”

Ahhhh. I know this boy’s thinking all too well. An eight year old boy shouldn’t have to worry about his mama dying in a kidney stone procedure. We talked and I told him, “I will only be getting a little bit of medicine to help it not hurt. There will be nurses and a doctor to take care of me. Michael Jackson took way too much medicine.” I asked him if he was still worried a few days later. “No, cause you’re just getting a little medicine…for thirty minutes.”

I’ve had ongoing days and weeks and months of kidney pain. Some days are way better than others. On the hard days, it’s been me telling my boys too many times to count, “I can’t play right now. My back is hurting too badly.” I’m hopeful that I will get relief soon though I have unexpectedly acquired a pretty high tolerance for pain. Thankfully, I possess a stubborn, competitive spirit that keeps fighting back when one of the many side effects of my disease challenges me.

I’m convinced that yesterday my strong and worried mind kept me alert during my procedure, despite the valium, versed and fentynl, because I wanted to reassure my deep thinking and feeling son. Particularly, I didn’t want to die on a day that I had made the worst gluten-free waffles for breakfast. The. Worst. Though due to the nasty waffles, the breakfast dance party was pretty awesome.

After my procedure, all three of my boys came up to my room to check on me when they got home. They get me. Every single time. They have an abnormal amount of compassion for their ages, most likely learned through watching their daddy lovingly take care of me when I’m wounded. One of them brought me water and a pain pill. One of them asked if I would be able to come down and watch a movie and saved me a perfect spot, right next to him. He kept making sure he knew which side of me was hurting. The sweetest.

I woke up feeling pretty good today. I’m a little sore but it’s totally bearable without the obnoxious pain meds. I have to do these exercises where I drink a lot of water and then lay on an incline to help get the broken kidney stones out. My dog wanted to maul my hair, lick my face and then finally gave up and decided to lay down next to me. Moral support-ish. I’m not sure if his presence will help move the stones but it always helps my spirit to have a friend willing to hang out with me, right side up or upside down.

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As always, thanks for reading. Thanks for sending your prayers for my spirit to stay positive and hopeful. Thanks for supporting me and my family in too many ways to count. Thanks for caring, for dinner, for worrying, for checking in, or for talking with my husband or helping with our boys.

*Yes. Seriously. Who knew? Not me. I was raised up in my wheelchair onto a traveling semi-truck. The truck is cost effective in that it goes around from location to location doing lithotripsy procedures out back. Literally, out back, in a semi-truck. Crazy. My husband laughed when we arrived in the office and the nurse told us. Then, he didn’t believe her so I asked him to go take a picture of the truck. Here is living proof that you can pretty much do anything out of a truck. Anything. Buy tacos. Zap kidney stones. The mobile truck industry is strong. Just set your mind to it. Get going.

Forty Balloons

~ Amelia ~ 4 Comments
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I think it was right around 10:17 am when I looked at my van clock in near tears. I thought to myself, “you can’t give up on today. Not yet. It’s too early. Plus, it’s hard to blow up balloons when you’re crying.” I had to do something right. I had to blow up the forty balloons when I got home. For my husband’s birthday.
He doesn’t expect the crazy balloon and streamer decorations. He’s quite simplistic and grateful and rather content with a hug and a pseudo-shout of “Happy Birthday!”
But I needed to blow up the balloons for me, I think. I felt defeated. I had to accomplish a small victory.
My lungs felt great so I knew I could blow up the balloons if I only took some deep breaths. And turned on some music. One of my handy dandy Spotify playlists. My “churchy songs.” Then, while the music filled me, I let myself have a brief imaginary conversation with every impatient and apathetic front desk receptionist I’ve encountered in countless doctor’s offices. Over the past twenty years.
Keep it brief, Amelia. Nothing to see, folks. Just a brief imaginary one-sided conversation.
Because it’s not fair. And I don’t care if it’s a weather condition. It’s not fair that I can call my doctor’s office three separate times and ask for my records to be faxed, transferred, or copied. They can tell me they did it. Several times. Then, I can show up at my long awaited appointment and it hasn’t been done or somebody has misplaced my medical records. And it’s somehow my fault. Because I can’t go behind the desk and do it myself. It’s not fair that I have to drive from an imaging center to a specialist’s office and then I’m supposed to drive to another doctor’s office. It’s not fair that I could not be seen by the doctor because I left my insurance card at home. It’s not fair that everybody in the office has a driver or a companion or a helper and a good twenty to thirty years of age on me. Someone was snoring in the waiting room. Full on snoring.
Cue the off rhythm lap drum roll with cymbal finale. CRASH!….Life’s not always fair. One tear. Two tears. Three tears. Smeared mascara.
It seems like I wasted an entire morning. And I just want to go see my grandma.
But I can’t. Pause. Sit. Bend. And move forward.
I do what I can.
I’ve started to be more aware of how I talk to myself. My inner dialogue. I’ve tried to be better at treating myself like a friend. A good friend. A dear friend. I write the raw smeared ink thoughts down to myself. And for myself. I feel them. I read them. Then, I write down the motivational and encouraging ones too. Friends make mistakes. Friends forget things. And I readily forgive my friends. Should I not be so kind and compassionate as to allow myself to make mistakes from time to all-the-time too? I know the answer lies patiently in my heart. Well, it’s tossing and turning and restless sometimes too. In the fresh mess of my thoughts and emotions, I easily forget.
Be kind and patient and loving and forgiving of yourself. Then, you can be that way towards all those others too. All those others that you love so much. All those others who love you, too.
I did it today. Perhaps I can thank my husband’s fortieth birthday. Or God’s presence and all those churchy songs. I turned an upside down morning, a damn near sob fest, into a no-name small venue sort of opening act of tears. Then, I blew up all the balloons. The forty balloons. I wrote, I listened to music and my mood shifted. I inhaled and exhaled the air from my healthy lungs and transferred it into the brightly colored balloons. I escaped far away from the frustrations and uncertainties of my body’s physical malfunctions and the doctor’s office. ALL of the doctor’s offices. And it felt good.
I cleared my negative thoughts. Goodbye. They may have travelled into all of the balloons. I think when they’re airborne, they die pretty quickly. But I did it. I really did it. Later, I could have stayed home but I didn’t. I went and met a friend for a quick fifteen minute lunch before I picked up my son from kindergarten.
Today, I’m thankful that I chose to control the controllable. And cope using the best ways that I had in stock and ready to use. I’m grateful that I had the strength to blow up all of those silly balloons. Ahh. The healing power of latex. Balloons. Latex balloons.

Lucky #13

~ Amelia ~ 2 Comments

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I’m not going to go all Celine Dion song on you. I’m just going to say a few things about our “lucky number thirteen.” Wait. What! Thirteen years of marriage.

On the night of our wedding, you helped me get out of my beautiful dress and then you waited patiently for me and helped me as I handled the first of countless unpredictable effects of my chronic disease on our marriage. That’s what you have always done in the most loving and compassionate ways. You wait with me. You wait for me. You wait on me.

You willingly help me conquer some of my rational and irrational fears. Or you sometimes fight the tiny battles for me. You always do the weird gross things like reaching your hand down the garbage disposal when a super hero or spoon is stuck. Or some other strange object has journeyed to that fear-inducing land.

And you do other harder things too. You sit with me when I’m sad. You hold me. You hug me in the driveway. You gently help me find my laugh when I’ve misplaced it or purposely put it in a top secret hiding place. Why would I put it in the deep freezer? Weird.

You generously donated to the cause of procreating. And you let me love on, worry about and (over)protect our three most precious gifts in crazy unconditional ways. You create with them. Laugh with them and play with them in face-hurting-from-smiling kind of ways.

I don’t quite understand how you can love me as much as you do and show it in such heart stopping ways. You think I’m beautiful when I’m a giant slobbering mess. Yet, you sometimes forget to tell me when I get all cleaned up. You encourage and support me and think I can damn near do anything. You probably think I can fly. Or you would watch a YouTube video on “how to fly” then show me that I could. Probably with the help of some wings, that you purchase from Amazon prime.

You put up with all my scatterbrained tendencies. The oh, so-many creative projects going on at the same time. You play the piano while I load the dishes and make me cry. Your music frees up the restrained feelings in my soul. Your enthusiasm for explaining a song makes me crave music like chocolate.

Your contagious love for others, even complete strangers, makes me feel closer to Jesus.

You urge me to keep writing. You give me the gift of time, always sweetly yet sternly telling me how much my voice matters.

After thirteen years, you still may not understand certain ways about me like why I would need to make the hummingbirds their dinner before our own but you don’t put up a fight about it.

Sorry for all of the sweaters I have shrunk over the years. Sorry for all of the smoke alarm dinners I’ve burned. Thanks for always making me laugh. Thanks for all of the kitchen hugs. Thanks for the ways that you father our boys. Thanks for petting Gizmo. Thanks for loving on those around you in inspiring and contagious ways. Thanks for thirteen years of pure awesome chaos.

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You’re my favorite.

I believe if everybody had this kind of love, the world would be different. Better. A million times better.