Monthly Archives: November 2014

Words from the Valley

Sometimes I hesitate to write from the dark places. It’s not natural and it’s not what I feel like doing. I’d prefer to “get to the other side” first, or in this case, out of the valley and up onto the mountain top, before I write about it.

There is one question women often ask and it always gnaws at me, whenever I share my story publicly; “In the midst of your depression, how do you find hope and comfort? When medications don’t work, what do you do?”

I feel like my response to the desperation I see in women’s eyes is always too trite. Too easy, because I’m speaking from the mountain top. I’m speaking from a place where medications have worked. I’m speaking from a place of healing.

So in order to better help formulate an authentic response to that question, tonight I’m going to attempt to share from my present journey in the valley.

Someday… maybe in a week or maybe in two years… I will write a wildly humorous post about what life after an ileostomy is REALLY like. It will be witty and comical and will entail all of the details that none of the medical websites, or even your doctor for that matter, will tell you. If you get uncomfortably squirmy at the mention of the word “poop” I will advise you to skip that post. I might even decide to write a follow up post to that post, titled, “The Top 15 Ways That Living with a Disability Prepares You for Motherhood”. Then we will laugh some more.

That day, however, is not today. Today everything is horrible, confusing, and discouraging. Almost every night has been spent in tears. I’ve never felt like a “mistake”, but these last two weeks, it’s taken every ounce of mental strength that I have to believe otherwise. I’ve lost 6 pounds in two weeks; partly from stress and depression I’m sure. It’s mentally draining trying to figure out how this revised body that I’m living in is functioning. I’ve had to face, head on, realities that starkly contrast the illusions if how I thought life would be for me, post surgery. I’ve had to hear the disappointment in Promise’s voice as she says, “I wish you had never had this surgery AND I wish you never had to take senekot.” I couldn’t agree with her more. I’ve been frustrated with God, wondering how this can all be “good” in my life? I’ve felt exhausted realizing that PHYSICAL HEALING MAY NEVER COME. Suddenly turning 30 years old in January might as well be equivalent to turning 90. I’ve been disappointed in my body and the time that it’s taking to figure all of this out. I’ve spent countless hours on the phone with medical suppliers, ostomy nurses, and the like, trying to find supplies that my body is not allergic to. At times, I’ve wanted to rip everything off, including my skin, because it just itches so bad! I’ve felt completely defeated as my Chiari has flared up, despite getting rid of the straining; as the burning at the base of my skull has gripped me, the pressure in my head resumes, and my arms and joints are too sore to even blow dry my hair (priorities, people, priorities)

I’ve wondered why God would allow me to be pushed to this extreme, after all I’ve already been through.

Tonight, my eyes fell on the title of one of my loved and worn devotionals, “My Utmost for His Highest” by Oswald Chambers.

“Utmost” by definition, means “pushed to your limit” or “extreme”.

And I was reminded, without even opening that little book, that that is the wonderful mystery of suffering. Somehow, by God allowing me to be pushed to my limit, to my extreme range of emotions, He is lifted higher in my life. It’s a mystery that I hope He will someday explain to me, but for now allows me, by His grace, to experience.

So what is my prayer tonight in this darkness? How am I taking another step forward?

“My utmost for your highest, Lord. My utmost for your highest.”

-Adri

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A Different Kind of Battle

It’s been one week. The highs have been high and the lows have been pretty low.

Each of my twenty one surgeries has been so different, bearing lessons that have become invaluable to me. They’re invaluable because they’ve demanded patience, faith, and an abundance of silent tears as I’ve waited for them to unfold. Suffering requires so much, but gives even more in return.

This surgery is no exception. It’s already taken on a completely different nature than it’s predecessors. It’s scars are not brave, heroic ones that I’m proud to show. The damage is not internal, but in contrast, the most physically altering of them all. Instead of healing on my back or beneath a cast, my healing is happening smack dab in front of me every time I look in the mirror. Except the healing is different. There will always be blood, tissue, and fluids. It’s never going to heal. It’s not supposed to. And as much as I can cover it up and disguise it from the world, I can never hide it from myself.

Physically, this surgery has been a breeze. The pain, while definitely there, is minimal. Mentally though, it’s been a battle. A unique battle and one that’s starting to get to me a bit. Thankfulness and joy intermingled with sorrow, embarrassment, and confusion.

One of my greatest fears is that my depression will creep back in. That scares me more than anything. Today I noticed some of my tell-tale signs and I could almost hear a little voice in the back of my mind say, “ha! and you thought you had me beat. I’m always going to be here”.

It isn’t uncommon to experience some depression after having an ileostomy (at least according to my hand out) and I know I need to give myself time. But you can pray for me as I’m in the midst of this; as I reach out to the professionals who love God dearly and have brought healing to this area of my life. Pray for wisdom on their part and mine. Pray that God would give me peace when I start to feel panicked about slipping back down that slope. Pray that I recall and remember what God has done, already in my life. Pray that I hold firmly to the truth that HE WILL NOT LET ME GO.

Last night I cried, sobbed actually, because I miss my stomach. It itched like crazy and it was all I could do to keep myself from tearing off the bag and all the glue that was making me itch. It’s a loss for sure, although it sounds a little silly when I say out loud, “I miss my stomach”. Especially in light of the losses that dear friends around me are experiencing. It is not a loss of a spouse, marriage, or child, but still it is a loss and I know I need to allow myself time to grieve it.

But the moment my bag starts to feel too big, is the moment I know my view of God is too small. 

He is here. He has not left me. He will work this for good far greater than I can imagine (again). So in that I’m resting tonight. He will give me the strength that I need tomorrow. Strength and determination that I certainly don’t have.

“You are my strength, I watch for you; you, God, are my fortress, my God on whom I can rely” Psalm 59: 9&10


Highs, Lows, and Where I’ve Decided to Land

One week ago today, we were still in Jacksonville, FL, rounding out a colorful and robust trip to Disneyworld with my side of the family; 8 adults, 4 tinys, and 1 teeny tiny. We flew home from my brother’s house in Jacksonville, last Monday evening, and life has been a whirlwind of teaching, work, kindergarten, grocery shopping, clean ing, laundry, surgery, and now recovery.

I think I’m finally just starting to breathe.

And when I breathe, it hurts, because I’m sitting here with my small intestine bulging out of my body. When did that happen?!? Oh…Thursday…that’s right.

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These past four days have been filled with highs and lows. That is normal for every surgery. I should know that after 21.

The Highs; No more laxatives…EVER. The money we will save on “no more laxatives…EVER”. The donuts we ate this morning (with a candle in it, I might add) to celebrate “no more laxatives…EVER”. My husband who tells me that no matter what, he will still find me very attractive. My daughter who is tremendously excited to have her Mimi and Papa here, caring for her. My parents who are here, caring for Promise, giving tirelessly of themselves, and (as always) helping me find the cracks where humor can be found in all of this. Friends upon Friends who have dropped off delicious, home cooked, gluten-free meals for our family. The emails, hand written notes, texts, and calls from friends offering encouragement and giving of their own mental energy to pray for myself, my family, and my doctors. The 2 pre-op nurses, both named Diane (I had to double check that because it was really early in the morning) and one of the Diane’s 40 years of experience putting in IV’s (you don’t want a Newbie). A surgeon who is so proficient in this surgery that it only took him 20 minutes. An anesthesiologist who listened and took into account my horrific track record with general anesthesia. Being able to spend my entire time in the hospital on a non-narcotic pain regimen. My digestive system waking up 2 days earlier than “normal”. Kind nurses who act like it’s “no big deal” to touch and handle the small intestine sticking out of my stomach. Medical technology. Being discharged one day sooner than anticipated. A high pain tolerance. Being home for family movie night on Friday night. Seeing the surprise on Promise’s face when she walked in the door from Kindergarten to find me home instead of in the hospital. For waking up this morning and realizing that there are NO MORE LAXATIVES….EVER. The first time, post-op, that I was able to drink coffee. Seeing in Chris’s eyes, post-op, that he really does still find me attractive. Promise bringing me a pink, tiny, sparkly elephant with HUGE eyes, that I know she probably deep down wanted to keep for herself. The two hours that I was able to spend in the Bible this morning, soaking myself in the truth of who God is and how small this trouble is in comparison to him. My first post-op shower and hair washing. Being told I have the flattest and easiest ostomy stomach ever (even though the compliment was given by people who work with 90+ year old patients…at this point, I’ll take it!). Seeing Promise’s excitement as she dragged her entire stash of Barbie “stuff” out to play Barbies with my mom. Our first fire in our fireplace. A home nurse who graciously engaged Promise in the inaugural “changing of my ileostomy bag”. Seeing, not a look of horror and fear on Promise’s face when she saw my stoma, but a look of compassion, curiousity, and love. The kiss she gave me on my cheek after I saw that look in her eyes. The card that came in the mail from my 17 Sophomores in my Fashion Drawing class. Eating solid food again. And last but not least, because I don’t think I’ve mentioned it yet, NO MORE LAXATIVES… EVER!!!

The Lows; The pre-op prep and clean out. The 72 hour liquid diet. Waking up at 4 am for surgery. Telling Promise goodbye the night before surgery Almost blacking out the first time I saw my ileostomy bag changed in the hospital. The gas bubbles trapped in my shoulders. The cramping, swelling, and soreness. Seeing my small intestines sticking out of me for the first time and realizing that they were [probably] never going back in. Some of the phrases in the “How to live with an Ostomy” handbook that the hospital gave me. Being called an “ostomate” after the handbook clearly states that an “ostomy does not change who I am” 😉 The nagging thought that I might never really be able to get used to living with this. Having to push Promise off of me mid-air, as she went to jump on my abdomen out of excitement and forgetfulness, and seeing her dissolve into tears from hurt feelings and frustration.  Having horrible aim and completely missing the toilet bowl when emptying my ostomy bag on one of my first tries at home. Hearing the pity in people’s voices when they say, “so you have to wear a bag?”. Compression socks. Being told by a nurse that I have skinny, tiny legs. Hospital food and footies.

One of my favorite shows at Disneyworld is “The Lion King” show at Animal Kingdom. There is one act where “monkeys” come out. The acrobats are dressed in bright yellow spandex suits with orange stripes and yellow feathers coming out of their heads. Despite their circulation-constricting apparel, they are able to move seamlessly in the air, doing flips high and somersaults low. They don’t miss a beat and they always land firmly grounded on their feet. I’m sure if I talked to one of these “monkeys” they would tell me that it wasn’t always like that. They had to practice. They probably got stuck by their legs, upside down in the highs, and knocked flat on their backs in the lows. But they knew where they wanted to end up; on their feet.

As I was reading through the Psalms this morning, because I’m not yet brave enough to face crowds of people at church and it’s still sore to walk, I came to Psalm 116:7

“Return to your rest, O my Soul, for The Lord has been good to you.”

I know where I need to land and I’m asking God to take my soul back to that place of rest that he’s brought it so many times before. Resting in his peace and joy, his love, his strength to take on another day.

This new act might take me some more practice.

But I know where I need and want to land.

-Adri

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Surgery Day!

This post will be short and sweet.

I am physically wiped and literally cleaned out. I’ve been on a clear liquid diet for over 24 hours. Last night, I took my LAST EVER dose of Senekot-S and Linzess. This morning I had my first round of cleaning out, went and taught my portfolio class, then came back and started chugging that nasty stuff you drink before a colonoscopy. At this point, I feel like the prep is actually going to be worse than the surgery. I’m so weak, light headed, my Chiari is MAD, have a horrible headache, and I am extremely hungry.

But tomorrow is surgery day! I have to be at the hospital in 6 hours. At this point, nothing sounds sweeter than having them knock me out cold.

What exactly am I have done? A Laparoscopic Keyhole Loop End Ileostomy. They will be creating a stoma (new opening) at the end of my small intestine (my ileum) in which my intestinal wall will be brought to the surface of my skin and flipped backward, creating almost a “cuff”. This will remain outside of my body permanently. The ostomy bag will then attach around the stoma.

I’ve spent the last few days in pre-op festivities, one which involved meeting with an ostomy nurse. I can’t even get into the emotional aspect of the physical change that is about to happen to my body. I’m too exhausted, so that will be reserved for a later post.

I do feel at peace, though, and I am doing OK. More than any previous surgery, I know that not only will this surgery dramatically improve my own health, but also the “health” of my family. That is what’s driving and pushing me right now.

My surgery is being done at Aurora St. Luke’s Medical Hospital in West Allis, WI on November 6th, at 8:30 am. My parents are here (Thank you, Lord!) so Chris and I will get to the hospital at 6 am and my parents will join Chris after taking Promise to school in the morning.

For now, we’d specifically appreciate prayers for post-op recovery. The procedure is about 2 hours and I will most likely be on a morphine pump, post-op. Given my history with anesthesia (It took them 3 days in the ICU to wake me up last surgery) and the nausea that I experience, prayer that both of these things can be avoided would be on the top of our request list. We will add more requests tomorrow.

As of now, we do not know how long I will be in the hospital, but at least one night minimum.

Thank you all for praying and GOOD NIGHT!:)

-Adri


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