Monthly Archives: August 2015

The Other Side of the Operating Table

It’s hard to settle into sleep tonight. It always is on nights like tonight. I’m not a stranger to these feelings.

It’s the evening before surgery. My mind is swirling with images and emotions that I subconsciously bury deep inside until I’m facing surgery head-on again. Only then do they reappear in detail, almost as if they occurred yesterday.

But tonight is different. This time, I’m not the one physically having the surgery.

Tomorrow at 11 am eastern, I will be on the opposite side of the operating table and it’s a place that I’m finding is uncomfortable to be. Especially because the person having surgery has been on the opposite side of my operating table since I was three months old.

surgery 11surgery 12  surgery 9 surgery 8 surgery 7 surgery 6 surgery 3 surgery 2

Tomorrow, I will watch my mom put her clothes and belongings in a plastic personal belongings bag in exchange for a ill-fitting hospital gown and light blue grippy socks.

I will watch as she climbs under the paper thin sheet of the cot and lays her head against the stiff pillow.

I will watch as the nurse comes in and asks if she’s cold and if she’d like warm blankets put over her. I’m guessing she’ll say yes. She doesn’t like being cold.

I will watch as they slide an IV needle into her vein and start the slow drip of antibiotics and pain medications that will flow into her blood stream.

I will watch as the surgeon and anesthesiologist come in the room and explain the operation. Then I know my dad will ask if we can all pray together, because that’s what he’s always done and we’re a family that believes in the power of prayer.

Then I’ll reach over and squeeze her hand. A hand that has held mine so many times.

I will watch as she gives me a smile and I’ll give her one back and whisper, “I love you very much and I’m proud of you”.

I will probably feel a warm tear roll down my cheek as they wheel her into the operating room and I know for certain that I will be wishing that I could take her place.

But then I don’t know what I will do because it’s a place I’ve never been in before.

But I do know that when she wakes up, I will be there to wipe the hairs off her forehead and tell her that she did a great job.

I will feed her ice chips because her throat will feel like sand paper.

I will get the nurse when the pain seems unbearable.

We will probably name her IV machine. Because that’s what we’ve always done.

I will be there to steady her when she’s forced to get up and walk for the first time.

I will catch her vomit if I need to. I know how nauseating anesthesia can make you.

Once she’s feeling a little better, I’ll bring her a peppermint patty from the gift shop, because that’s what she always brought me.

I will watch her sleep and while she does, I will read my Bible and pray. Because that’s what I’ve always seen her do.

surgery 4

Friends, please cover my mom in prayer tomorrow at 11 am eastern time. She is having a complicated cranial surgery performed to correct a rare condition in her inner ear. The surgery will take approximately 3-4 hours and the risks are many. She will be in ICU for 1-3 days and the hospital 4-8, depending on the severity of her condition once they are “in there”. Pray for full restoration of her hearing and a “better-than-expected” recovery. Pray for stamina for my dad. Pray for the surgeon and nurses. And I know my mom would want me to ask you to pray that whatever happens tomorrow would bring God glory.

Because that’s what she always prayed for me.

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(This verse has been a rock for my mom throughout these past 6 months)

-Adri

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False Guilt and Grace

Mom Guilt. Self-guilt. FALSE guilt.

I can’t fall asleep tonight until I get all of this out on “paper” because…call it whatever you will… this guilt has wreaked havoc on my day and my soul and I can’t help but think that there is another person out there tonight who needs to hear some of what God’s been telling me about this.

I also want to shatter any false notion that social media might have portrayed about me having this whole “living a life with chronic pain” thing figured out. I do not… I repeat, I DO NOT… have it figured out.

But I do have a God who is abundantly giving in both the areas of forgiveness and grace.

Let me give you a little backstory on how I spiraled into today. This past weekend we vacationed up in northern MI with my side of the family. We’re scattered throughout different states and we keep multiplying our offspring, so we rented a home on the water in order that we all could be together. During the course of trying to make good use of that waterfront access, I climbed (or rather crawled) over some pretty rocky terrain in order to then plop myself on a jet-ski, cozied up behind my husband, to take a little spin around the bay. (It’s important to note that part of my reasoning behind doing all this was out of GUILT that I had slept until noon that day because my body was tired and so I felt I needed to make up for that). We had a really fun time out on the water and I have no regrets about going.

But the next day, as my feet hit the floor, I felt a sharp pain in my ankle/heel. Shaking it off as “just nerve pain”, I strapped on my leg braces and limped about in the cute downtown area, filled with quaint little tourist shops.

The pain in my foot has persisted and it’s leading me to believe I strained a muscle in my foot while trying to get down the rocks and onto the jet ski. It’s frustrating because I was just attempting to do something “so normal” and I am paying for it in such a huge way.

It’s been painful to walk for two days now and the pain is starting to wear at me. I’ve spent the majority of today laying on the couch or in bed resting and sleeping, trying to give the muscle a chance to recover.

But it’s summer time and I have a six year old daughter at home that can’t fully comprehend why I need to take breaks. It’s frustrating to her that I’m always “resting”, which in turn exasperates my frustration with the situation even more. Even though it’s literally a perfect day out (the kind of day we wait 9 months to get here in WI), I find myself on the couch watching “Beethoven’s Christmas” out of desperation to “DO” something together with her. Once that’s over, we move on to crafts that I can do while laying down, but that only lasts so long. She’s restless. I’m restless. My foot is throbbing. My head is filled with so much pressure. Every complaint from her about “not knowing what to do” is like a hammer to my skull and I GET CRANKY. I get impatient. I get snappy.

And before I know it, my good friend GUILT is snuggled up all cozy next to me on the couch. “Why can’t you be like the moms you see on your instagram feed?” … “They’re taking their kids to the state fair on a beautiful day like this”…”You realize this is going to harm Promise FOREVER, don’t you?”…”You should get up and fight through the pain”… “That’s pretty pathetic that you can’t even enjoy a beach and sand without it causing you so much pain”… “If you had been able to have more kids, Promise would have someone to play with”… and on and on and on. All day the messages that guilt feeds me swirl and fester in my head.

I send my friend Dawn, a desperate text message asking if there’s any way she can pick up Promise for a few hours to play and she graciously and cheerfully obliges.

But guilt rages on. Guilt about sleeping…again. Guilt about not being at the park playing with them. Guild about not being up cooking dinner. GUILT ABOUT NOT BEING ENOUGH.

I’d like to say that when Promise returned home from playing, I had my attitude straightened out, but I didn’t. My pity party and self-induced guilt was RAGING and my cranky, selfish attitude continued. Only this time, Chris was blessed enough to be the beneficiary of it as well.

And that pretty much was my day. Pretty ugly, right?

But see friends, that’s where God steps in. I am so thankful for him and for his Holy Spirit nudging me. I’m so thankful that he doesn’t let me go to sleep without walking into Promise’s room, kissing her sleeping head and then apologizing to Chris for my cranky attitude.

As much as I hate that GUILT has controlled my day, I know that GRACE will redeem my day.

And while it’s tempting to let my physical pain be the excuse for being short, un-loving, selfish, and impatient with my family; the truth is that it is no excuse. I am human and sinful. I need to ask for forgiveness for those things, both from God and from my family.

Once I have that sorted out and taken care of, I can realize that there are also things that guilt has been telling me that I need to ask for forgiveness for that I actually don’t.

I don’t need to feel guilty that I needed a day of rest. I don’t need to feel guilty for climbing down rocks. I don’t need to feel guilty for watching a Christmas movie in August rather than going to the State Fair.

“God does not demand that we keep up with anyone else. God only asks us to be faithful with who we are [and what he’s given us]- with all our limitations…If we are accusing ourselves, we are outside of God’s will for us, for our Comforter wants us instead to find hope and wellness through grace. Whenever we are made to feel guilty about matters that are unrelated to our actual sinfulness, we know that this sense of blame does not come from God, but from the temptations of the accuser” – Marva Dawn in Being Well When We’re Ill

Tomorrow morning I will have to wake up Promise in order for us to drive an hour to see my podiatrist in IL. I know false guilt will want to buckle into the passenger seat for the drive down.

But I’m thankful for God’s grace. That his mercies will be new in the morning and that I can (through His strength) attempt to control my attitude, despite the pain that I cannot control.

-Adri


Ruth’s Wheelchair

“Sister Lea and Ruth sends you greetings and a very big thank you.” – Sister Lucy, Amukura Orphanage

It brings me so much joy to share these photos with you of Ruth in her new wheelchair. Thank you for all you did to aid in her being able to have this!

For the backstory on this precious little girl and our effort to bring her a wheelchair, click on Dinnertime Leftovers and Twelve Dollars, But God… But God… But God…, and Pennies with Promise

ruth wheelchair 2 ruth wheelchair 1

-Adri


“That’ll be a great day…”

Tonight I’m writing out of a place of a lot of pain and hurt. I wish I could tell you that I’ve spent the day reveling in the joy of a flawless blood report, but that just wouldn’t be true. This is the part of living with a chronic condition that is so hard. It’s hard for me to try to formulate all of my thoughts into coherent sentences, but if I didn’t try, I’d only be sharing half-truths with you. I’d be attempting to make myself look stronger than I am, when the truth is right now, I feel crushed.

But I know God can use my crushed state of mind, too. It’s all or nothing and for some bizarre reason, I’ve chosen to share it all with you. Maybe it’s because I keep hearing over and over how God is using it to encourage those of you who are struggling with something that is chronic in your own life. It doesn’t change. There doesn’t even seem to be an end to it.

So for me not to share these feelings with you would make it out to seem like I am not human, that depression is not still a reality in my life, and that I don’t desperately want to be free from this stupid human body. (It’s not stupid. While I am so frustrated with it right now, I know deep down that my time here on earth in this body is a gift and a privilege.)

Let me explain why today was so hard, because I’m sure a few of you are completely bewildered right now at how I could be feeling all of this when I’ve just been told that I don’t have cancer.

This morning at my hematology appointment we received great news. A perfect echo of my heart and a stellar blood report. I’m healthy as a horse as far as my blood goes. This should be AWESOME, right?! Yes. And No. It’s complicated. Obviously, I don’t want to have Leukemia. I feel like I shouldn’t even have to say that, but I will, because I don’t want you to misread this next part of what I’m going to say.

Every time I start experiencing a new symptom and then the test results come back “normal”, it means another part of my “normal” function has died. And that is HARD.

It is hard to hear that these constant night sweats are most likely a result of my autonomic nervous system continuing to decline. It is even harder to hear that if that is indeed the case, there is no way to treat it. A part of my “normal” is dying. Again. And as I’ve said before, that takes some grieving time.

At this point, you might still be confused and asking, “Couldn’t there still be a possibility of a treatable bone infection?” Maybe. But after a few hours of phone calls this afternoon to doctors and nurses both in Chicago and here in Milwaukee, the verdict is leaning toward not doing a bone scan or looking for infection. The chances of an infection three years after surgery is almost unheard of. Plus, we’re lacking a lot of “concrete evidence” of a bone infection (as one nurse put it). I am not having fevers, the sore spot on my spine is not red or hot, etc. So where does that leave us? Exactly back at where I started when I walked into my Primary care doctor’s office one month ago; with a high likelihood that this is another ramification of a nervous system that is shot and worn out and continuing to fail.

And so that is what I’ve been sitting with this afternoon and evening. The heaviness of THAT. My antidepressants have made my mind function well enough for me to know that depression is hovering. I know the signs. My antidepressants are doing their job. They allow me the grieving time that I need, staying crumpled up in my bed, letting the painful reality of this new loss wash over me. By God’s grace and beautiful love, my mind is able to separate and sort out that it is OK to feel like this for a while, that it’s OK to fall asleep for six straight hours in the middle of the day, but that it’s also necessary for me to wake back up at some point, even though every part of my flesh would just like to be home, forever asleep, being comforted in the arms of my sweet Jesus.

If you’re in a place where your mind isn’t able to think like this or sort out these confusing feelings, please tell someone. I remember the place you’re at right now, and on nights like tonight, I’m very aware of the enormous difference that telling someone can make.

You need to know all of this because if you are in a really dark frame of mind right now, it is possible to move to a point where you realize it’s OK to feel the hurt without trying to numb it. And then from there you might be able to move to a place of realization that not only are you allowed to feel emotionally weak, but it’s a good thing because it allows God’s strength to be poured into your weakness. Your dark moments will probably always come and go, but you’ll start to get into a rhythm of mourning and then being filled up with God’s redeeming strength for tomorrow. It’s a process, but it IS possible.

Chris gave me the sweetest gift tonight. As he gathered my crumpled self into his arms, he simply said, “That will be a good day when you’re finally home, won’t it?…no, actually that will be a great day.”. All I could do was nod my head as warm tears spilled off my cheeks onto his head. He gave me the gift of knowing that he understands that this life is hard for me and that there is an eternity waiting for me that will be so much better.

But God chose to wake me up again and I know that while I’m exhausted, his constant mercy and goodness will be there in the morning. And so that’s what I find deep joy in. Not acing a blood report, but in the fact that the blood Jesus spilled for me on the cross is allowing me to wake back up again.

-Adri


A Restful, Invigorating Inner Climate

Two weeks ago tomorrow Chris and I found ourselves walking into the Columbia St. Mary’s Cancer Center building in downtown Milwaukee. Having spent a considerable amount of my life in medical buildings, I was struck with how peaceful this particular clinic was. The east wall of the waiting room was solid windows that displayed an impressive stretch of the Milwaukee Lake Michigan beachfront. There was a courtyard with cascading waterfalls and fragrant flowers. As I walked through the “chemo area” I noticed boards on the wall where patients could post notes about things they were thankful for. I couldn’t help thinking that maybe all hospital buildings should embody this same concept.

The appointment went as well as it could have. My doctor was kind and personable and even has a seven year old child, to boot!There was nothing glaringly obvious indicating cancer but on the same token, he wants to look further into the cause of these night sweats and my elevated eosinophil count. The type of night sweats that I’m having are typically indicative of something awry with my immune system. We talked through our game plan, which is essentially a few months of lab work, scans, possible biopsies, and lots and LOTS of waiting.

Tomorrow (Wednesday, 8/5 at 10:15 am) Chris and I will meet with my hematologist, again, to discuss the results of a blood smear that he ordered at my first appointment. For the past two weeks, he’s been studying my blood under a microscope, trying to discern and observe how my white and red blood cells reproduce. I’m continually fascinated by the way God has created our bodies and the knowledge he has given doctors. Tomorrow we will find out if my cell reproduction is normal or if there are irregularities. This will be a good indicator of whether or not there is a blood disease or infection going on. If he has noticed something “off”, I will go in for a bone marrow biopsy that would be extracted from my hip, in order for him to then study my stem cells. If my blood looks normal, I will most likely proceed to seeing a bone specialist to try and determine if these night sweats could be caused by a slow moving, underlying bone infection.

I also had an echocardiogram about a week ago to ensure that “all is well” with my heart and the vascular system that moves my blood in and out. This was precautionary more than necessary. Precautionary, so as to make sure that no sneaky infectious bacteria has decided to settle in and set up shop in my arteries.

An echocardiogram can only show what is physically taking place in my heart, though. If someone could invent an echo that showed the emotional and spiritual well-being of my heart, the results would look a lot like the cancer building I described above. On my heart wall, you’d be able to see a large “Thankful Board” on which I’ve been mentally posting little notes. One of the notes would have a quote scrawled on it that says,

“I’ll be praising God for all eternity, but only during my brief time on earth can I bring Him joy through praising Him in the midst of pain.”

This is a quote from the book “31 Days of Praise” by Ruth Meyers. After reading it, I immediately posted it securely to my heart wall.

I really have no “gut” feeling about what tomorrow’s appointment will bring. But I do know that God has been conditioning me for over 20 years to praise Him in the midst of pain, so no matter what the results of my blood work show, that is what I’ll do.

“Even in troubled circumstances, or when God does not choose to work in spectacular ways, praise can help us view our situation through different lenses. It can help produce within us a restful, invigorating inner climate.” -Ruth Meyers


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