Chronic disease

Coronavirus helpers

~ Amelia ~ 4 Comments

I felt like I should write about the pandemic although I don’t really want to because I just feel so tired and I worry that I won’t have enough energy to use proper punctuation perhaps this will be one long run-on sentence and my english teachers will haunt me saying, “period. exclamation point. comma. comma. comma, amel-i-a.” you know like the song. i did it. i used a period but i will no longer use capital letters because i can’t. what day is it? i just want to go to target. or somewhere. anywhere.

me and my littlest breathing treatment buddy…a fave pic from years ago

but i am vulnerable. and i don’t choose to be. i have a lung disease and an auto-immune disease and so i have been staying home for weeks. almost 4 weeks. but who is really counting? oh, me. i am a busy body. i like to go. ever since i quit working weekends in the hospital years ago, i dreaded the medical paperwork. the “occupation” box highlighted my insecurity because i hated filling in “stay-at-home mother.” because i don’t. i am a “go wherever i’m needed mother.” like most of my mama friends.

oh, man. my heart just keeps aching for my fellow hospital working sisters and brothers. i wish i could sneak into the equipment rooms and give them all a big hug. a long one. or an iced water. or something substantial. i cry for them. those with grieving exhausted eyes. those who hold their pee all shift long. those who have the tenacious capacity to hyper focus on the patient: the daughter, the sister, the mother in front of them and care for her in the most extraordinarily compassionate and self-sacrificing ways.

when you have been the patient far too many times to count, like me, its all too easy to imagine the pain. the terror. the sufferering. and yet, the tangible love and beauty winding its steady way through every hospital room, hallway, stairway, waiting room. the helpers have carried me through my darkest moments. they have showed up in the wee hours of the moon morning when i needed to get out of bed but i couldn’t do it all by myself. the helpers have brought me my medicine. my iced water. an extra gown to cover up my ass. they have taught me it’s ok to be the weak kind of strong, the scared kind of brave and that healing is a journey not a moment. they have listened to me moan, laugh, cry, and they have recognized my silence.

i read about them. i know them. i worry about them. we pray for them. i squeeze my eyes shut to hold my tears inside when my precious eleven year old boy pleads for God to care for those working in the hospitals. please, God, please, hear his heartfelt prayer. please make this all end soon. please help us all to do our part. give us the courage, the strength, the love and place your hands on top of ours as we grow weary yet still hold onto hope.

40 Year Old Pearls

~ Amelia ~ Leave a comment

After having an amazingly simple birthday without parades or “over the hill” signs, one of my twin boys came to me crying at bedtime. He sobbed and said, “what did you mean when you said that this morning?” I quickly tried to remember what I may have said in a hurried morning state of mind. My son responded, “You said you were happy you made it to 40.”

Oh. That. I still felt a bit confused as to why my tender-hearted boy couldn’t contain his sobs beside me. Through his snot and tears, he continued, “What does that mean? That you made it to 40.” I began to understand that he may have thought I had an expiration date. And I got it. I understood his worries.

One of my biggest fears as a woman and mom who has Crohn’s disease and has experienced countless surgeries, procedures and complications is that I will not live to see my boys grow up. All the way up.

I’ve been in many hospital rooms in a desperate, totally dependent state. My boys have happily visited me, sat gently on my bed, and eaten the nurse-issued hospital popsicles. Still, it tears a hole in my mothering soul not being able to care for my children when my own health takes center stage. I’m pretty certain it’s because of those difficult times that I play harder, hold on longer and love the best and most that I can. When I can.

I worked for years in the pediatric emergency department, an environment where you can’t help but learn how terrifyingly fleeting and fragile life can be. In an attempt to somehow honor those who died too soon, I try to live my life without regrets, albeit imperfectly. It’s not possible to do this every moment of every day because bills, stress, mean people and life can get loud and my inner voice doesn’t like to scream.

My youngest boy studied my pearl necklace at dinner last night. He asked, “How do you make a pearl?” My husband and I explained how a piece of sand gets into the oyster shell and how the oyster works hard to get the sand out. In the process, the oyster makes a pearl. We explained how it’s rare, but it creates a beautiful masterpiece. In the process, I’m sure the oyster isn’t stoked about the dirt in its cramped space. (As it turns out, after some five minute Wikipedia pearl research, it’s more of a microscopic parasite or tiny crab invasion that makes the mollusk work to protect itself, thus creating a pearl to envelop the invader. Still, pretty dang awesome)

One of my hopes and life goals is to find the pearls amidst the pain. I’m aware that my life and perspective has been altered time and time again by laying on too many doctor’s tables to count and waiting to get better. I fight. I grumble. I cry. Then, I guess I try my best to envelop these intruders in something beautiful. Like a mollusk. Who can forget those paper sheets and backless hospital gowns? We cannot control all that happens to us in life. Sometimes it feels like we can’t control much at all. But I do believe in the great power we hold to choose our perspective. Make our pearls.

If we can take the time to recognize the tiny moments filled with so much beauty and love, it’s impossible to deny the gift of the life we have. Our lungs. Our breaths. Our hearts beating. We get to live amongst belly-laughing, freckle-faced kids, hummingbirds and weird mushrooms. If you buy a pair of binoculars, and use them correctly, suddenly you can feel like you’re riding on the wings of a great blue heron. We live in a amazingly simple yet fascinatingly complicated world. If you look gently and persistently, you will find that beauty often surrounds the pain.

Last night, I held my ten year old boy, snuggled up to him. I apologized if I made him worry. I helped calm his fears and my own and I tried to help him understand the best I could how extremely grateful I felt to turn 40 yesterday. I let him know that I hope to live forty more years. I cannot begin to enunciate the echoes of love in my heart for the life I get to live. I am so deeply grateful for those who hear me, see me, love me and cushion the blows that sometime come my way. No matter the extent of my pain, God has always provided me with the greatest, most supportive human pain relievers, helping me create funky shaped pearls.

Here’s to a new decade of playing in the water and probably falling repeatedly on my ass. And getting back up, over and over again, whole-body laughing all the way.

Heavy Pretty Trees

~ Amelia ~ Leave a comment
I’ve spent hours plowing the snow this weekend. I feel strong and productive when I can hurl, shove, and carry the snow across the driveway. It’s rather hard work, yet mostly calming for me. This snowfall landed hard and heavy. It knocked our power out. My boys got to experience how many of our luxuries require electricity. All. The lights. “The TV?” Yes. “The heater?” Yep.
Looking outside, my old tree loving self had conflicting emotions. It was gorgeous yet sad. The beautiful mature trees in our neighborhood looked exhausted as they held up the weight of the snow on their branches the best that they could. All the neighborhood creatures hid silently below the pure white blanket of snow. Interupting the winter silence, I could hear the tree branches crack, snap, fall and I often heard them land on the hard surfaces below.
After one large tree branch fell, my son asked me,
“Mom, should we go tell (our neighbor) that tree just fell?”
When we embrace the life that surrounds us, we all have the tendencies to snow coat our hardships or dwell on how heavy our branches feel. It’s a difficult balance to hold the beauty and acknowledge the pain. Sometimes, I hide from people because I don’t like faking how I feel. Sometimes, I do my best to show that my branches are purely beautiful not heavy. Just like yours, right? But that’s not the truth. If I can be honest and vulnerable then I put out a welcome mat that allows those around me to do the same.
I wanted to share a picture of myself feeling confident and proud of braving the storm. It’s been a rough couple of weeks. Or maybe longer than that. I’ve got a pocket full of hope though. And we’ve got a shoveled driveway and my boys got the sidewalks. We’ve also got our power back on. Lights and heat and dishwashers and dryers are pretty darn nice things to have.
Hold on, heavy pretty trees, I think you’re going to be alright.

Staphylo-(you’re a)-COCC-us

~ Amelia ~ 5 Comments
If I could grow a rainbow mustache, I would do it. It would be beautiful, sparkling and shiny and super clean. Then, people would be fascinated with my colorful mustache and I would be less insecure about the impetigo sores on my face.
Call me crazy, nonsensical or ridiculously impractical (same thing) but I’ve got a problem. With the natural bacterial world. It’s with the seemingly annoying small things like impetigo, cracks in my fingers, and winter diarrhea bugs. Ughhh. Small things. That exist without sharing much great love. Perhaps, having part of my small intestine coming out of my body makes me feel like I should have some sort of super immunity Captain America type shield to the petty peck, peck, pecking away at my immuno-compromised body. It’s quite the opposite though.
Do you know who gets bright red, itchy, burnt pus filled sores on their bodies, faces and under their tiny noses? Children typically do. Sweet little babies who don’t understand. Oh, yes, and my grown ass adult face gets impetigo too.
Oh, how I understand the heinous contagious sores. I tend to them like a diligent gardener. Even though I’m unsure of how to diligently garden. I clean and clean and ointment the painful tender blisters that feel more like burns. OUCH! Mother@&$!€r! Who put their cigarette out under my nose? Who would do that? And in my sleep.
I’ll tell you who. An opportunistic staphylococcus bastard. If I could have negotiated with the bastard before he infected me, I would have said, “Hey, again. Listen, I already have Crohn’s disease and a big ass kidney stone camping out in my left kidney. Can you just leave me the hell alone? For today. Why don’t you go play with C-diff. Just don’t take advantage of my overly-snotted-on broken-down skin under my nose. Please. I beg you.”
Fine. Be that way. I hate you. Yep. I said it. And I do teach my kids not to say the word, “hate.” It’s a bad word and you’re a bad bacteria.
Who am I kidding? Then, I would probably get some aloe-infused Kleenex for Staph because I’ve taken the imaginary conversation too far.
But I’m pretty sure Staph doesn’t listen anyways. Bacteria can be so egotistical. Or is it narcissistic? Thinking they can go wherever they want. Infecting people, surfaces, whatever. It’s cool. They’ve got a confident “don’t fence me in” mentality. You’ve got to hand it to them. Just make sure you wash your hands after you do.
The redness under my nose makes you accidentally make that “ouch, what happened? Did a Kleenex try to kill you? That must hurt face.” You know the one. It’s fine to do it to babies but not so much grown-ups. I feel a bit better and I promise I won’t touch you. Unless I really don’t like you. You should be suspicious if I start doing awkward double face kisses like I’m from another country. Just kidding, I don’t think I’m contagious anymore.
Or am I? Insert evil laugh.
Whatever you do, just say no to “staphylo-(you’re-a)cocc-us.” And wash your hands for crying outloud. I see you, winter. Now, stop it.

 

91d0996a-7b4b-4a27-829d-e853de42aed2

Pinkie Rings

~ Amelia ~ 2 Comments
301A1984-A8AD-4A71-8183-1AD19F754415As we sit together in the waiting room, I hand him my wedding rings. It’s our pre-surgery ritual of sorts. He delicately slips them onto his pinkie finger. Well, not really, he shoves them down over his knobby knuckle. His fingers are strong and wider than mine, probably from playing all of the instruments.
He will proudly wear my wedding rings as I fall into an anesthesia-induced sleep. He will wait and pace and drink bad coffee and then wait some more for the surgeon to be done. He will anxiously wait for me to come to the recovery room.
Over the years, he has unexpectedly become an expert hospital cafeteria food critic. He has gotten lost in far too many hospital hallways. He has spent hours upon hours in the waiting room. And I know he would do it all over again.
He would choose me. Complicated old me. He would marry me all over again tomorrow.
I slowly open my eyes. I’m confused. And sleepy. He is there. I relax and close them again because I still feel so sleepy. I’m awake. Again. I’m hurting. So badly. He quickly gets the nurse. I hear him talking to her. He knows I’m not one to complain. He knows me. He knows that I need more pain medicine.
He is hurting, too.
In a different way than me.
He gets no narcotics.
He won’t leave me. He stays right beside me in all of the tiny hospital rooms. He holds my hand. Or he rests his arm gently on the bed because he doesn’t want to hurt my fragile body.
This is hard. This is selfless. This is not me dancing in a silk wedding dress. This is me writhing in pain in an oversized unisex hospital gown. It seems that there is nothing in this for him.
I’ve lived long enough to know that this kind of love is rare.
This is a small glimpse of my husband’s love for me.
When I’m more alert and my pain is not controlling my mind, I tell him that he can go. He doesn’t want to but I need him to make sure our kids are doing okay too. He is pulled in a million different directions but he manages to handle the uncertainty, the chaos, and the unfairness of it all with an unearthly amount of patience, and the most delicate form of kindness and grace. Gut-wrenching grace. I love him every day of the week but the days I spend in the hospital and in recovery, I somehow love him so much more.
He fills me up when I am empty. Tired. Worn out and in too much pain to be mad. When all of my dignity has been scattered throughout that hospital, he searches patiently and always finds it. Then, he secretly delivers it back to me without making a big scene.
I can try but his faithfulness and his love for me is hard to describe in words. I feel it. He carries me through, somehow without ever needing to lift my aching body.
Could the greatest gift to our marriage be this never-stopping, forever humbling, life-altering, soul-shaking disease? I don’t know. It’s probably not fair for me to answer for the both of us.
I’m not the one wearing the pinkie wedding rings.
What I do know is that God has these sneaky beautiful soul-capturing ways to show his love and tenderness through the worst and most unfair situations. Failed surgeries. Complications. Loss. Pain. Uncertainty. But yet, Hope with a capital “H” has taught us how to be honest, forgiving, humble, patient and ever grateful for the days we get to spend together.
Fourteen years of marriage. Together. A twisting, turning, chaotic, unpredictable, beautiful and hard journey that we have learned to embrace together.
I’m forever grateful and proud of the husband he is. I’m honored that he is willing to wear my wedding rings on the days when I can’t.
Oh, how I love you, Cory. The morst. To the moon and back. To infinity and beyond. A million billion.

Humor Poncho

~ Amelia ~ 2 Comments

I flung open the door and reached into the overcrowded laundry room closet of my brain. I grabbed my humor poncho and then ran out the garage door. I’m always running late. I hear it means I’m optimistic. I read that in an article on the internet: a most reliable source, so it must be true.

I thought I might need a lightweight, easy-to-carry coping mechanism for my doctor’s appointment.

Better to be safe than soggy.

I’ve cried in front of many doctors and nurses over the years. I don’t like to do it. Especially not in those awfully patterned, poorly designed oversized hospital gowns. It’s just that I’ve had so many difficult appointments. It’s awkward. Most of the doctors I’ve had don’t quite know how to handle the slow trickle of tears or a sobbing mess of a patient.

Although, one time, my favorite surgeon sat down next to me on my hospital bed. I could tell that she hurt for me by the look in her big brown sympathetic eyes. That kind of response helped ease my sadness, my pain and frustration and oh, the crying weirdness. Crying in front of medical strangers? I highly don’t recommend it. But, sometimes, you can’t prepare for how your mind, body or spirit will handle certain settings, unexpected pain or the news of a failed procedure or a delayed discharge date or another surgery.

I recently met with my new urologist. Bad news. After a $20,000 lithotripsy procedure, straining my urine for a week (so fun!) and hanging upside down two times a day, my kidney stones didn’t budge. Unphased. Because, of course, my kidneys grow what I call “strong ass kidney stones.” The kind you would want to make a wedding ring out of. If you wanted to stay married forever. I knew I needed to go to a funny place. I thought about bringing a couple of rocks from our backyard garden to my appointment. “Here, Doctor, I passed these bad boys.” But, there’s nothing like doctor’s office stage fright or the potential for an audience of one to lack a sense of humor. Or perhaps, walk in unprepared for the “comedic patient” or be afraid to laugh. The list goes on. I get it.

Humor tends to be my buffer, my go-to move. It helps me momentarily cope. It’s my fast-acting short-term ability. It acts as a cheap, easy-to-carry poncho to temporarily protect me from the harsh realities of life. It’s lightweight, easily accessible. No phone booth necessary. “Ha. Ha. Ha. You’re making truly fluorescent light of the situation.” My funny self talk. Humor: it’s typically well-received. Because people like to laugh. Laugh, don’t cry. Repeat. Just laugh, don’t cry. People like funny. Don’t bring any of that sad shit news, right? Don’t go around ruining people’s sunshiney days.

But sometimes, life rains down. Nope. It pours. Sadness. Frustration. Loss. Disappointment blows and anger and fear strike hard. A poncho can only offer brief protection. Most of us don’t want to feel the chilling hard rains of life seep into our bones. Yet, you can only ignore it for so long when you’re sopping wet.

I walk to the car or get to my house and I peel that humor poncho off. I let it dry out on the garage floor. Dare I let myself go to the ugly crying places? Dare I let myself ask, “Why?” and “Why?” and “Why?” again. I texted my husband. He helped me laugh. And process. Dry off.

IMG_8596

I remembered all of the ways my stubborn, strong-willed spirit and body has helped me over the years. I remembered my perseverance. I remembered my three sons and how it took two doctors to get my third boy delivered because my body was so damn strong. And stubborn. God gives me this crazy strength from time to time and I’m certain it’s contributed to who I am and what I’m capable of today. Naturally, my self-manufactured kidney stones will not be moved. They will put up a good fight. They’re not quite pearls but that doesn’t mean I can’t pretend they are when they surgically remove them.

Perhaps you could say a few prayers for my surgeon and the nurses and crew. They have a difficult job especially when it comes to a well-seasoned stubborn patient like me. You may be so kind as to include my husband and my tender-hearted boys. While you’re at it, you might as well pray for me, my kidneys, especially the right one, and my weary anesthesitized soul. Thank you for caring.

Also, be on the lookout for my Etsy shop. “Strong Ass Kidney Stone Jewelry” I may work on the name a little. Limited supply, factory closing down. They won’t be cheap so you may want to start saving your change.

Clean Bathroom Rug

~ Amelia ~ 6 Comments

IMG_9718

I laid my head down on the rug of my bathroom floor. Only because I had just washed it. It had not gotten all smushed down from repeated post-shower use. Yet. It was still fluffy and clean. And that worked out well because I was exhausted. Sad. Confused. Emotional. Beyond repair. Boggled thoughts. Unable to articulate what exact thought or event had triggered my current “distant” and sensitive state.

“What’s wrong with me?” I thought.

I emotionally scanned myself. It’s always difficult to determine what may be the exact reason for a sudden onset of the blues. Parenting exhaustion. Disease fatigue. A wave of grief. The grumps. A negative outlook. A sour face to go along with a curdled disposition.

My husband knows me well. It’s as if he immediately saw my thoughts escape somewhere else, away from the rowdy dinner table. I couldn’t tell another boy to sit down and eat. So I sat there apathetically. I knew that a glass of milk would soon surely spill but I was prepared to not react. My husband asked what was wrong.

“It’s complicated,” is what I thought.

So, I said nothing. One of my boys waved his hand across my eyes because I stared out the window. Apparently, I had not blinked or changed my facial expression in long enough for him to notice.

Occasionally, I get a bit overwhelmed. Maybe we all do. By life, in general. Or every little and big thing from the laundry to a busy next week to aching kidneys. And all the changes. The big adjustments. And the little ones, too. The future. The unknowns.

I can overthink. Overfeel. I can beat myself up but that doesn’t ever help. There are so many days. Juggling life’s moments scattered with a lot of relationships can be tricky, especially if you’re not so graceful like me. Balls drop. I sometimes bend over to pick them up quickly. Quick! Nobody saw that! Other times, I can’t get to them before my little people hand them to me. Then nights like tonight, I just plop myself down on the ground. I take a break from all of the juggling because I’m tired. And sad. It feels like one of them nailed me smack dab on my face, right on that sensitive part of my nose. Ouch.

Shhh. Be very quiet.

There is a hidden great grandma introvert rocking away inside of me. There are times when my extroverted self needs a break. I need to retreat to a serene, distraction-free place. All by myself. It doesn’t matter the place. A bathroom floor or a secluded overly full closet will do. I just want to curl up like a baby or a tired long-legged child. I don’t want to answer any questions. I don’t want to be touched. I don’t want to worry about the present or the future. I need to release a swarm of tears. Alone. I don’t want anyone to worry about me because I will be okay. I really will.

I promise.

I will get up off of the clean rug. I will say goodnight to my big boys and cuddle my six and a half year old baby boy. I will wake up to a new day full of life, hope and endless possibilities. I know that the same three energetic boys who hugged me as tight as they possibly could when they said “goodnight” will wake me, tickle me, wrestle me and laugh me out of bed when the sun rises again.

Tonight, I told myself that it’s okay to be sad, grieving the past and overwhelmed at the future from time to time. Here you go self, sadness permission granted. I think I do a pretty damn good job of being genuinely happy and grateful most of the days. Some moments or days are just harder for whatever reason. However big or small.

I’m not giving up, just taking a moment to recover. I try my hardest to cherish most of the days, even the challenging ones. I typically push myself to find the good. The sparks of light or the gigantic sunset in front of my face. I try to recognize and embrace the fleeting moments.

But there are some moments that come at me like a fall off the monkey bars. They knock the breath out of me. They arrive quickly and unexpectedly. Wind escapes and it’s just so hard to breathe. I try not to panic, or overreact, so I can just get through them. Wait. Don’t try to breathe yet. Oh, dear Lord, see me, hear me and help me. All the time but especially during these hard overwhelming moments. And help others like me.

Slowly. Gently.

Breathe in, and breathe out.

There. I did it.

I step out of the bathroom and think,

“Goodnight, tonight. Welcome, tomorrow. It will be so nice to see you.”

 

“He heals the broken-hearted and binds up their wounds.”

-Psalm 147:3

 

Favorite Doctor Thank You note

~ Amelia ~ Leave a comment

IMG_9661I walked out of a new doctor’s office today with two discrete green bags. It looked like I had just bought several new pairs of shoes. Feeling all-Julia Roberts in “Pretty Woman,” I walked out to my car. Where did I park again? I drove to the bakery because I had pre-determined my post-doctor’s appointment destiny. I told myself that I could go get a pastry and a coffee after my appointment. Yes, an incentive or grown-up prize motivator for completing a dreadful task.

I love this certain bakery because there is a kind woman who works there who accidentally shares great stories with me. I thought if she’s working today then that will be an extra prize for me. I have too many -ologists. Pulmonologist, endocrinologist, gastroenterologist, urologist. But, I do have pretty spectacular health still. I can drive myself to my appointments. And by golly, I can drive myself to the bakery following my appointments if that’s my Thursday destiny.

This past year, I received two letters in the mail. Letters from two of my different -ologists that he and she would no longer be practicing medicine at a certain location. This can be somewhat disheartening, discouraging and all-together overwhelming for an un-administrative assistant like me. I stink at meeting new doctors. I hate new patient paperwork, new doctor small talk, the waiting. The medical history. Blah. Blah. Boringdy blah. Blah.

But I got to thinking, what if doctors could send a pretty or funny or sympathetic greeting card when they left? I know they’re super busy and have a lot of patients but if they could, I thought of some meat for the card.

“I’m sorry. It’s not you. It’s me…..I’m moving. I’m leaving the practice. I’m retiring.”
“You’re a really awesome patient. I will miss our medical and non-medical talks. P.S.-Sorry for all of the waiting.”
“I’ve seen a lot of patients in those weird paper gowns, but you always looked the best.”
And so on. Oh, wait. One more.
“I wish I could fill out all the new patient paperwork for you. And fax all your records the first time you call, too.”

Ack. What if my doctor left because I never wrote him or her a proper thank-you note? I thought I should do that.

Dear Favorite Dr. or Doctor,

We, experienced patients, get rather attached to our good, old worn-in and perhaps worn-out doctors. You’re the courageous messengers of difficult-to-hear information. You’re the sympathizers, the cheerleaders, the healers, and the gardeners of hope.

You’re with us in some of our darkest, most difficult moments. And you gently help us reach the light switch with that fancy tiny rolling doctor’s stool of yours.

I keep forgetting to write you a thank you note for all that you do. Is it too late? Will you stay now?

I know that you carry your patient’s worries, fears and hopes and dreams with you in that genius brain of yours. How do you remember so much life-saving information?

Your mom must be so damn proud of you. I would have liked to know you under different circumstances, when perhaps, you weren’t wearing your work cape. But I feel honored and privileged to have someone like you taking care of a complicated person like me.

Thank you for seeing me as a “me,” not a disease or a diagnosis or a case study. Thank you for all the times you handed me one of those cheap hospital grade kleenex. Or thanks for sitting next to me on the bed when you had to deliver bad news. Thank you for doing the jobs that you could have had somebody else do. Thank you for being honest in the most respectful and delicate ways. Thank you for handling me and my precious family with compassion, patience, kindness and never-ending care.

Thank you for all of the sacrifices. Please thank your family, too. I know you have spent time away from them helping all of us. Thank you for coming back in the middle of the night. Thank you for your willingness to learn, to adapt, to grow and do the things the right way, which is rarely the easy way.

Thank you for helping me. You’re famous to me.

I will miss you.

And I would fill out the new patient paperwork a million times for a doctor like you.

Love,
Amelia

I don’t always need a self-pep talk or (several)post-doctor’s appointment treats, but today I did. Did I mention that I don’t like filling out all of that new patient paperwork? When I complete it, can I consider it a memoir of sorts? Hooray, I’m a published author. You will have to check my medical records. Boring much? Bonus: There are so many signatures that you won’t even need a signed copy.

Cheap paperback only.

Overcoming

~ Amelia ~ Leave a comment

IMG_9649I’ve spooned many dark nights with sadness. I’ve arm-wrestled with anger. I’ve sobbed on the bathroom floor with disappointment. I’ve had one too many drinks with resentment. I’ve hand-cuffed myself to shame. Apathy and I have stared outside my kitchen window. I’ve shared a tarnished best friend’s necklace with inadequacy. Fear has driven me home many nights.

Uncomfortable. Miserable. Trudging. Falling. Bargaining. Despising. All-consuming. Short-lived. Neverending.

I will allow you a brief cameo in my life. On my stage. In my thoughts. Then, I will close the curtain on you.

I recognize you. I’ve met you. I know exactly who you are. And what you are. You’re necessary. Yet, you’re one dimensional.

But I am not.

Goodbye for now. The unknown. My temporary struggles. I have made long term plans with peace. Joy is on my speed dial. My soul patiently holds her hand out for me. Grace knows the code to my garage door. Self-compassion opens her arms wide to hold my truths. Because I have love and mercy overflowing, I will not run dry in the midst of pain, uncertainty and my struggles. My discomfort and questions and lack of answers will not consume me. My faith will steady me.

I will be watching the setting sun before me admiring the gorgeous colors of the sky as they change every day. I will hear the giggling boy beside me. I will push on his left-sided dimple and I will point to mine. I always will be healing. I will never stop growing. As long as I am living. I will stumble. I will fall. And I will get back up again.

Struggles and strengths. They will lead me through this complicated world filled with hope.

God has never left me. He hears my sighs, my laughter and my tears. Jesus feels my pain. And He willingly fills my love tank. The Holy Spirit revives me, recharges me, inspires me. Time after time again.

I am overcoming.

Lithotripsy Semi-truck

~ Amelia ~ 2 Comments

4AE7928E-01BA-4FEF-B947-A927A419508F

“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.

2728815E-1ABF-4488-B650-130F262BCF1A

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.