Lithotripsy Semi-truck

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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.

Healing Crohn’s Disease

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I’ve had Crohn’s disease for nearly twenty years. Even, at times, when the disease is in remission physically, it never lies dormant in my thoughts, emotions, or in my soul. It alters how I live my life in both the beautiful positive ways and the ugly and debilitating ways.

A chronic disease can be completely overwhelming at times. It can feel like being trapped in a prison cell. It never goes away. That piece of knowledge can haunt you and capture you. It can  make you feel alienated, confused and depressed sometimes. It can feel like nobody truly understands. Maybe they don’t.

I’ve had to get creative and find ways to escape the lifelong sentence of my chronic disease. I wasn’t made to be imprisoned. I force myself to look outside, make a plan and know that I will do great things once I’m free. I find ways to sneak past the warden, who I’ve  gotten to know pretty damn well over the years. It’s myself. No matter how many things in my body get scarred, altered, rearranged, or broken, I will forever hold the key to my freedom. Resilience, perseverance, humor, faith and hope help me dig the tunnel out. Sometimes, I force myself to follow the tiniest glimpse of light.

Healing is an ongoing process.

Healing is acknowledging my fears but not inviting them in for dinner. Healing is exterminating shame. Healing is letting myself feel the weight of it all: the unfairness, pain, loss, anger, and sadness. Healing is sharing my story and listening to other’s stories. Healing is giving myself the same extraordinary compassion I so freely give to others. Healing is forgiveness. Healing is changing, growing and evolving into a different person. Healing is allowing the hundreds of disease-related experiences to affect me. Healing is granting myself the permission to be different. Healing is acceptance.

Healing is always searching. Healing is often found in helping others. Healing is possessing a willingness to go back the opposite way through the tunnel I’ve dug, back to the darkness, to the prison cell of another. Healing is holding another’s hand, looking into another’s eyes. Healing is seeing a glimpse of myself in a hurting child, a lonely mother and a dependent elderly patient.

Healing is a gift that I open over and over again throughout my journey.

Healing is finding and seeing the beauty in the closing of wounds or watching the water run over the bright red flesh sutured outside of my abdomen. Healing is standing outside and staring up at the mesmerizing flight patterns of the barn sparrows. Healing is hearing my children’s laughter, holding their hands and answering their innocent questions.

Healing is my husband’s relentless, supportive, unconditional proud love for me. Healing is loving him.

Healing is everywhere.

Healing is found in accepting encouragement, love, support, bear hugs and help from those who surround me.

Crohn’s disease is healing.

I am healing.

 

 

 

I’m sorry, Brownies

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I’ve learned that when the hummingbirds migrate for the winter, brownies are my best friend. You know the Ghiradelli kind, of course, the ones with triple chocolate chips. They are unlike any other. Warm. Gooey. Messy in all the right ways. But lately, I feel I like I purposely lost my half to our best friends necklace. I’m sorry, Brownies. We have to friend break up because I learned that I have an amoeba infection. Apparently, the microscopic amoeba bastards like sugar. A lot. It appears that I have been providing them with the perfect environment for an orgy of sorts. They have been getting it on like rabbits. Or amoeba, I suppose. I don’t want my body to be a fancy vacation rental home for amoeba whose credit card is declined. I don’t want the pain of cramping, the annoyingness of diarrhea, sleeplessness and fatigue that amoeba tend to carry in their duffel bags.

So, I have now been eating a no sugar diet for ten days. I think. It’s not like I am counting the days or remembering every dessert that I have had to no longer leave room for in my belly. You see, for a girl like me, dinner has always been the home-town opening act of sorts. And well, dessert has always been the headliner. My Justin Timberlake.

Ever since I was a kid, my brain focused on one thing. “Must. Get. Dessert.” Do whatever you must do to get dessert. I would sneak food in my pockets, under my napkins, in my mouth (to go spit out in the toilet) and so on. One time, I remember cramming some food under the coffee mug at a Cracker Barrel restaurant on a family road trip because, “if you don’t eat your dinner, you don’t get dessert.” I should probably write an apology letter, decades later, to the waitress who had to clean that up. But, did I get dessert? You bet.

There are only a few sugary things I have missed out on this past ten days. Most of which, I have strangely chosen to make from scratch for my family. Similar to the weird and addicting trend to watch somebody play with toys on Youtube, I have found some amount of comfort in watching others eat sugary foods. I am also pretty competitive so I have inner dialogue with the amoeba folk. “You think I can’t make chocolate chip cookies without eating one? You’re on, amoeba bitches.”

Then, I show them who is boss. Self control, I need you now tonight. And I need you more than ever. Once upon a time I was falling in love, now I’m only falling apart.

There’s nothing I can do. It’s a total eclipse of the heart.

It’s me. Not them. I’m in charge. It’s my body. And my body belongs to me. The party is over, sugar addicts.

I thought I should jot down my sugar diary lodged in my memory into a bullet format:

  • I have baked brownies which is my go-to dessert move. But this next one was new, I made homemade caramel sauce for said brownies. Then, I scooped ice cream. Brownie sundaes. Duh.
  • A few days later, I made chocolate chip cookies. Holy hell. Do you know how hard it is to NOT taste-test the batter? Thank goodness, my five year old could do it for me. I should have YouTubed it.
  • To celebrate Mardi Gras, I made two cinnamon King cakes. We had friends over so there could be an even bigger crowd for me to watch eat the cake. Maybe I have a problem.
  • Later in the week, I thought we should use those free Lamar’s donuts coupons. And I may be in withdrawal and hearing things due to the lack of sugar, but I am pretty sure I heard several of my favorite donuts crying behind the glass. I turned my back on them.
  • Oh man, at a family birthday party, I even had the self control to skip out on my mom’s homemade strawberry cake with it’s best friend in tow, Costco vanilla ice cream.
  • Typically, when I pick up laundry in my boys’ rooms, I usually snag a piece or two of their candy (don’t get all judgey. It’s kind of like I imagine them giving me a tip in candy form for doing their laundry. “Thanks Mom, for picking up those clothes right next to the hamper. Here’s a snack size twix bar.”) I haven’t eaten any of their candy. In ten days. Doing laundry really sucks now. Maybe my husband will accidentally leave a five dollar bill in his jeans pocket. A girl can dream.
  • Enough of these bullets. This is getting more sad than I intended.

The point is, if I must have one, that it’s really hard to change behavior, make sacrifices, stand out or do things differently. It’s challenging to alter the way we think, feel and act. Eating is a huge part of our lives. Physically. Emotionally. Socially. Spritually. We plan our next meal, think about food, indulge in food and perhaps, as I have learned about myself, over-indulge in food. I have had my momentary pity parties, but for the most part, I have kept a great attitude because I truly feel better. Just don’t tell Brownies yet. It has helped tremendously that I have a supportive husband and sweet kids to cheer me on. Stevia, (the only sugar substitute I have approval to use) has not helped. That stuff is just nasty. I will take my coffee black, thank you very much.

When my 21 days of eating and drinking a no sugar diet are done, I hope to stay in tune and conscious of my sugar intake because I think it’s a healthy practice for my body, mind and soul.

In breaking fickle best friend news, my current new best friend is Bengal Spice tea. Celestial Seasonings doesn’t play around when they make their tea. They must have people on sugar-free diets in mind. All the flavor, no sugar. No caffeine either. Say what? Get ya some.

Undressed Emotions

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I guess I will get my emotions dressed up for you. You seem to handle them better with make-up on. All nice and pretty and seemingly unaffected by the storm of life happening around me. I don’t like to pretend but I can’t handle the pain of my feelings being used against me. So, I will disguise them in humor or unrealistic optimism and perhaps a bit of exhausted joy just for you. Then, you will feel better about me. And my diseases.

Every day I wake up, in the middle of the night, like tonight, and I live my life with diseases that let their presence be known. Always. Every single day. I don’t forget that I have them. Ever. My body won’t let me and neither will my heart and mind. That’s the definition of chronic. But I make a conscious decision daily: I choose to rise above the pain, the frustrations, the inconveniences, and the disabilities. It’s an extremely delicate balancing act which is difficult because I’ve always been a bit clumsy. If I talk about it too much, I’m perceived as letting the disease control me or define me. If I don’t talk about it all, I’m somehow resilient yet I feel ashamed, dishonest and like I’m denying myself of tiny, yet powerful everyday kind-of luxuries that I grant to those whom I love. When I say luxuries, I mean vulnerability, compassion, grace, forgiveness and honesty.

Most days, if you looked in on my life, you would never know the burdens that I carry. Because I probably don’t want you to. I don’t want your pity, your hopeless looks or your unintentional alienation. I also don’t want to feel so damn different that I become the chameleon who is awkwardly late to adjust to her new surroundings. I know I’m different. But I also believe that, thankfully, we all are. There’s no possible way that nearly twenty years of chronic disease cannot impact your physical, mental and emotional well-being. It affects who you are, how you relate to others and all the ways that you live your life.

If I show you or tell you about a horrible experience or a day that will make you want to cry, it’s because I trust you to handle my disease in a dignifying way. Or perhaps I’m willing to sacrifice a bit of my pride or privacy in hopes that you will grow in your understanding, compassion or sensitivity to others around you. I’m not trying to gain attention to boost my ego. But is it helpful when people who I value encourage me? Yes. Especially in the moments when I’ve been wounded so deeply that I’m tempted to never speak of this disease again.

I will pull myself back up again and remind myself that oftentimes I speak for a group whose voice has been muffled or lost or ignored. Or misunderstood.

I will write for the mothers who are too damn tired because I have strength in this moment. I will write for the daughters who are scared and hopeless and feel excluded. I will write for the boys and men who have been told they should keep fighting yet that they’re not supposed to cry. I will write for anybody who has ever been momentarily bullied by life. I will write for all those who feel the shivering, aching presence of grief. I will always write because the light, the good, and the extraordinary capabilities of the human spirit triumph all of the shit. Time and time again.

Life is rarely a bowl full of cherries but that doesn’t mean that it still can’t be something pretty great.

I guess I have changed my mind. And my heart. Again.

I will not dress up my emotions and feelings to make them prettier or easier for you to handle. They are real. Raw. Truthful. Difficult. They are joyful. They are powerful. And they are practically impossible to conceal. I spent many years pretending and hiding and being truly myself to only a handful of people. Fear had a tight grip on my shoulders. I didn’t fully trust God’s beautiful awesome power to use the bad to cast a spotlight on the good. Thankfully, I have adapted and evolved over the past twenty years. God continues to perfectly place people in my life who fill me and strengthen my soul with hope.

The beautiful, rare and unexpected gifts that accompany pain and chronic illness will always loosen the ever-present restraints. I breathe easier with an adjusted perspective, overwhelming gratefulness, a heightened awareness of mortality, and the undeniable presence of being surrounded by unconditional love. Thank God for the camouflaged gifts and for all of those who graciously give my heart more space to grow through it all.

 

Nobody Understands Land

It’s a dark and lonely land. You don’t go there often because you know that not much good comes out of even a brief visit there. It’s totally quiet in the house. After bedtime. Outside your window, you can hear the crickets and locusts talking nonstop to the moon but that’s about all.

It’s nighttime.

You’ve somehow managed to make it through another day, but you’re so tired. More like exhausted. You desperately need rest. You crave sleep because your body keeps borrowing calories from itself to fight the diseases. Your diseases.

You let yourself think about it momentarily. Living with chronic illness. Even when the physical symptoms subside, the emotional and mental drain persist. The disabilities you think you disguise so well in attempts to not gain pity or unsolicited attention, worry or that look in another’s eyes.

But tonight, you let go. You give yourself the freedom to temporarily think about all of the hardships. The many ways your life is different, more difficult. How even now in the dark, by yourself, you’re afraid to take the deep breaths that you need because you may start coughing. Damn lungs. Then, your guts will ache. Damn guts.

Your sad late night thinking helps you catch the red-eye flight. Destination: “Nobody Understands Land.” You’re on the plane. Without flight attendants. All alone.

You arrive.

Hello, there.

Welcome to “Nobody Understands Land.”

Only nobody is there to greet you. It does not feel like an all-inclusive vacation. Or a romantic get-away. It feels cold. Empty. Desolate. It feels like you’re standing in an uncomfortable place. A place where your thoughts and feelings chose to go. But strangely, your weary body knew better. You don’t have a jacket. Big surprise: all of your luggage got lost.

Everyone you were traveling with must have hopped on a different plane. A plane that you could have caught a long time ago before your life changed forever. Before you got sick.

Your life is different now. From all of theirs.

Tonight, you’re right. Nobody understands the pain of living with the daily physical reminders of your fragility. Your broken guts. Your struggling lungs. Your twisting kidneys. And all of the other parts that ache or quietly whimper. Nobody could possibly understand the isolation associated with the millions of different directions your diseased thoughts can go.

Yet, somehow their favorite guilty pleasure and escape is, “Nobody Understands Land.”

Only, it feels hopeless there. It should never be a final stop. A brief lay-over might be okay. A place to sit for a moment. “Alonely,” as one of your boys might say. You stop, sit down. You think and think until you feel a tapping on your shoulder. That nudging. Oh. God interrupts you, picks you up and carries you to catch your flight back home. As you’re in God’s arms, you look around. Ahhhh. You see. It’s not empty. It’s not so dark anymore. There are others. Tons of others. All of them are looking down as they hold their heads in their hands. You can’t leave yet, you need them to know too. They are not so different. They are not all alone. You see them. You need them to see you too. You jump out of God’s arms to tell them that you understand. Because you do.

Every single time, He gets you out of “Nobody Understands Land.” Because it’s not true.

Somebody always understands. Somebody sits in the chair and aches right next to you. Perhaps a different physical hurt but somehow the same feeling. A universally understood hurt. Empathy can be real. There’s always someone somewhere who gets it. Someone who truly understands or wants to try and understand. Someone who feels your pain, recognizes the pain in your eyes and wants to take it all away. But since they cannot, they sit next to you. Holding your hand so you can feel their presence or so that they can feel yours.

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You are not alone. You never have been. You never will be.

Somebody always understands.

Kidney Stones

Awwwww. How cute. What a kind and polite anatomically correct use of medical terminology. Stones are fun for kids and grown-ups a like to hold and collect. And kidneys, aren’t those your pee makers? Well, I have got news for you, when one of those sleeping little “kidney stones” wakes up and decides to go on a road trip, aka fly the kidney coup, they become, “mother fuckers.” That’s what us stoners call them on the street. I just made that up. I don’t have a support group of “stoners” that I ran this blog by first.

If you’ve ever had a mother fucker, you know what I’m talking about. You feel me. You got me. 100%. Solidarity.

Because there is just no nice way to put into pleasing-for-your-conservative-grandma’s ears the amount of pain they cause. Trust me. I’ve experienced a crud ton of pain in my life, too. I always think it’s funny when someone reports on a pain scale of 1-10 that they are a “10.” You’re a 10? Really? You’re so cute. The only problem is you don’t kindly say a 10, you fuckin’ look a 10. You moan. You’re on the ground. You think it’s absolutely ridiculous that someone is trying to get you to “rate your pain” when you’re obviously dying. How fuckin rude. Actually, you feel like you’re in enough pain that maybe somebody should just go ahead and kill you. Yep. That kind of pain.

When a mother fucker aka “a kidney stone” decides to head to the next rest stop, aka your bladder, you can’t deep breathe. You can’t visualize anything except a cruel heartless person repeatedly stabbing you with his shady pocket knife. Over and over in your left lower back region. And he just won’t stop. There is no negotiating even though you have told him that you don’t carry cash and your bank account has “insufficient funds.” Why would you tell him that anyways? That’s too much information for a robber. This cruel asshole will not take “no” for an answer. He is just going to keep on stabbing you. Don’t try to lay down. Get back up. Nope. Hunch over. Yell “FUCK!” Get in some weird unspoken, awkward yoga pose. Just try your hardest to NOT feel like you’re dying. Even though you know you are. Good thing you got that life insurance. Did you mail the check yet?

Drink water. Throw up. Cuss. Pray and promise God you will do anything if he will just make the son-of-a-bitch arrest the mother fucker. What? It’s confusing when you don’t use medical terminology. I am going to let you know right now this is how Web MD describes kidney stone pain:

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“Waves of sharp pain…” Really, Web MD? I like waves. You know, those sparkling sun-kissed ocean waves. They’re relaxing and beautiful. How dare you describe kidney stone pain as peaceful like the ocean. Who are you, Web MD? Do you think it’s funny to lie to millions of people. Oh, it’s not lying when you water-down or sugar coat the truth? Don’t send me a bill for this visit because my insurance will not pay for your lies.

Don’t you know that you’re never supposed to consult the internet to learn about a medical diagnosis. Come on.

My description is so much more realistic. If you or someone you know ever “passes” a kidney stone, I’m so freakin sorry. Having a baby is way more fun. And so is having surgery.  Just tell yourself or your friend in the most sincere and genuine way, maybe with a tear drop in your eye,”Congratulations. I heard you had a mother fucker. Holy shit. I am so sorry. I’m glad you’re still with us.” Now make sure you get that life insurance check mailed, ok? To my knowledge, Hallmark hasn’t come out with this sort of medically inappropriate line of cards. Yet. We can all hope for the future of expensive thoughtful cards, right?

Round Table Discussion

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A few weeks ago I had the opportunity to talk about living with Crohn’s disease in front of a small group of young adults in their twenties and thirties. I attached the link below to the discussion.

I have found a sense of hope and healing in sharing my story with others. Although it can be difficult, it’s quite therapeutic to talk about the journey including overcoming obstacles, my faith, the low moments,  my coping mechanisms, etc. I thought Chris asked great questions throughout this round table discussion. He sympathized with me, yet also encouraged me to share about how having this disease has changed me and affected me in positive ways.

I’ve had several friends who hoped to come to the discussion but weren’t able to. I thought if you wanted to to listen to me share a bit of my nineteen year journey with Crohn’s disease, you can click the link. I told Chris that he “went all Barbara Walters” on me when he asked me to talk about one of my lowest moments. Spoiler alert: it’s sad.

Even if you don’t have time to listen, I thought I would emphasize the enormous value, for both parties,  in sitting across the table from someone who truly wants to listen to your story. Whatever your story may be. We have so much we can learn from one another when we take the time to hear, see, and feel life from another perspective. We welcome the opportunity to grow intellectually, but more importantly, we invite in beautiful real-life moments that can change our hearts.

https://drive.google.com/open?id=0B3iCHKad_tV_a3NnaVhPNnFidzQ