It’s been 2 weeks since my kidney transplant. Here’s a nice long video in which I ramble on and on about whatever pops into my head. Enjoy!
XOXO, Ashley
Two Weeks Post-transplant Update
XOXO, Ashley
Medullary Cystic Kidney Disease
XOXO, Ashley
He is who He says He is.
Y’all. This is my jam right now. It’ll be playing on repeat. Forever.
“I am who He says I am.
He is who He says He is.
He’s not just reviving.
Not simply restoring.
Greater things have yet to come. “
I have been experiencing so many emotions over the past few months; they’re all tumbled and jumbled inside my head and my heart and it’s kinda overwhelming. I haven’t been able to completely process them all. And in truth, I may never be able to make total sense of this experience. Because it’s not really my experience. It’s a small part of God’s story. I’m not in control of this and no worrying or stressing will change that. Every day I see a new way He is my provision. Yesterday I was experiencing the tell-tale signs of a cold. And right now I’m seeing that illness diminish more each moment because God provided me with friend after friend after friend who brought me tea and meds and oils and diffusers and allthethings. Today I was worrying about my position at work {I don’t qualify for FMLA because I’m PRN}; and yet God provided an answer through a compassionate and fierce boss who went to bat for me. This afternoon a sweet friend brought me a hospital care package full of goodies and funny little notes to lift my spirit. And just this evening {literally as I was typing this} a friend brought Chris and I a beautiful card and money, which are so appreciated, but they also shared wise words when I was feeling guilty about how this is going to impact my children. God provides.
With only 7 days until transplant day, things are certainly becoming more ‘real’ in my head. I’ve noticed so much more anxiety creeping in. This. Is. Happening. I don’t want anxiety and worry to be my focus right now though; so I’m making sure the things I read and listen to and see are reflections of God’s goodness and light, not the darkness I want to focus on. If we want something to flourish in our life, we need to feed it. If we want to be more generous, then we must spend our time steeped in the one who demonstrated ultimate generosity. If we want to be joyful, we must surround ourselves with the one who created joy. I want peace in this stressful time, so I’m being purposeful in filling my mind (with what I see and listen to and read) with things that highlight God’s goodness and love for me.
I am no victim
I live with a vision
I’m covered by the force of love
Covered in my Savior’s blood
I am no orphan
I’m not a poor man
The Kingdom’s now become my own
And with the King I’ve found a home
(And with the King I have a home)
He’s not just reviving
Not simply restoring
Greater things have yet to come
Greater things have yet to come
He is my Father
I do not wonder
If His plans for me are good
If He’ll come through like He should
‘Cause He is provision
And enough wisdom
To usher in my brightest days
To turn my mourning into praise
I am who He says I am
He is who He says He is
I’m defined by all His promises
Shaped by every word He says
I hope it brings you encouragement and hope when you listen to it. I hope it gives you a glimpse of our God and His love for you. He is provision. He is wisdom. His plans are good. What relief that we don’t have to wonder about tomorrow. I’m defined by His promises.
Xoxo,
Ashley
Choosing Joy {in chronic illness}
It’s very easy to slip into some form of depression when you have a chronic illness. Battling discomfort or pain every day, week after week gets really old, really fast. It’s a constant presence in your life; one which you didn’t invite in and can’t seem to get rid of. There are many different types of chronic illnesses and many types of depression, and I don’t claim to know much about it all except what I’ve learned from my own, very limited experience dealing with chronic kidney disease. Please read these words through that lens; with the understanding that your illness and your depression is yours, and coping and healing looks different for each person. I’d label my depression as extremely mild in comparison with the other types of depression out there. I’m not minimizing my struggle, just acknowledging that while I have been able to combat my depression on my own, some depression requires heftier interventions, such as medication and counseling. But I do believe we can all improve how we cope with the negative things going on in our lives.
Lately I’ve been hearing a lot of “You don’t look sick” and “I forgot you were sick”. Those comments always take me by surprise because, while I guess I don’t always look sick to others, I sure do feel sick. Every morning it’s a struggle to get up. It’s a struggle to stay up. I struggle with nausea and headaches and with forcing myself to eat something. I want to stay in bed. I don’t want to go to church. or small group. or work. or to the grocery store. I don’t want to stand at the school bus stop with my daughter. I don’t want to do the dishes. I don’t want to shower.
And yet I do {except I usually ignore the dishes} despite all of the yucky-ness this illness brings me. How? I choose to. That answer seems so simplified, but it’s ultimately all there is to it for me. God offers JOY in this day. He offers PEACE in this day. And I choose to cling to that rather than allow my focus to remain on the yuck. The yuck isn’t going anywhere right now. I have to wait for my transplant in order to escape it, and even then this yuck will be replaced with a different kind of yuck during recovery. So instead of letting the yuck make my life completely yucky, I choose joy.
I absolutely believe God is generous in providing us with all of the fruits of the spirit {love, joy, peace, patience, kindness, goodness, gentleness, faithfulness, and self-control} just as He promises in Galatians. However, it’s not that we automatically become more patient or kind or joyful as soon as God flips the magic ‘Holy Spirit’ switch in us. We have to choose to seek that change in ourselves. When I find myself asking “Why am I restless, where is my peace?” and “where has my joy gone?”, It’s then that I need to actively pursue seeking to change that in my life. That seems so simple, but it is very difficult to look for peace and pursue joy when you are chronically ill.
In depression, it’s difficult to get up, get out, do things. But that is absolutely what I have to continue doing in order to battle back those feelings. I go and I do, when all I want is to stay and sit. And in return, I experience joy and peace in this time of my life where I am scared and nervous and so uncertain of my future. Did you know that God created us to laugh? He gifted us with a sense of humor because laughter truly is the best medicine. I’ve learned a lot about the concept of ‘brain over body’ this past year. I’ve had to train my brain to respond ‘yes’ when my body cries out ‘no’. Yes, I will go to that meeting because I know that when I get there I will find my purpose {and laughter}. Yes, I will go to small group because I know when I get there I will find comfort {and laughter}. Yes, I will play with my kids because I know they will give me snuggles {and laughter}. And experiencing laughter is one of the ways I find joy in my life right now. Laughter is the greatest distractor; it allows me to get through tasks that are otherwise overwhelming and exhausting. I will choose to experience joy and laughter each day rather than simply bide my time while I trudge through these murky waters, hoping for a different tomorrow. Each day that I wake up feeling sick is still a day that counts towards my life’s total days. I don’t want even a single day to be a waste. God is generous with providing me with opportunities for joy and laughter. It’s up to me to recognize those moments and choose to experience them.
And one more thought, simply because I don’t want you to leave this conversation thinking “Wow, must be nice to just choose happy and then everything is rainbows and unicorns” {insert eye roll here}. It’s absolutely not. There are many days where I am in the murky water and I stay there. Choosing joy doesn’t mean the yuck goes away. It simply means you recognize that God is there too. Right there with you in the yuck. And he is offering you peace and joy in so many different ways so you can actually live while in the yuck, rather than simply exist. But you have to reach for it. Choose joy.
xoxo,
Ashley
That time I knocked over a grocery store display. And also {slightly less important}, that time I needed a kidney transplant.
This has been an interesting season of life for me. I’m actually the healthiest I’ve ever been. I’ve been working out so I am the strongest I’ve ever been, which makes me feel invincible and fierce. Unfortunately, I’m also the sickest I’ve ever been, what with my kidneys being wack and all. If you’re just tuning in, you can read about my genetic kidney disease here and its more recent progression here. So unfortunately, I’m not invincible and only sometimes fierce. But even in my moments of failure and weakness and fear, you guys…. God is SO good.
I had begun feeling stressed about this whole process recently, mostly due to a lot of wait time and unreturned phone calls and miscommunications and just a whole lot of ‘not great feels’. But God delivers what I need, when I need it. This week I was needing my phone calls to be returned from the transplant center and I just wasn’t getting the responses I needed and it was frustrating and stressful. But my prayer warrior mom and her prayer warrior friends prayed big prayers for immediate call-backs for me one morning. And I got those call-backs. Immediately. As in within the hour. Prayers answered.
You know what else God has given me? Breath in my lungs and the ability to place my feet on the floor and get out of bed each morning. This is not what I thought kidney failure would look like for me as I approached transplant. Granted, some days I am so tired I can barely make it to 1pm before laying down. And my appetite is a crazy rollercoaster that takes me from eating all the things one day to forcing a smoothie down just so I don’t pass out the next day. The nausea is annoying and the metallic taste in my mouth is disgusting. The headaches are debilitating and are the result of iron deficiency and not being able to eat enough. And the foggy brain makes me fear for my sanity, since my short term memory seems to be non-existent.
All that laid out, it’s still just headaches and nausea and exhaustion and foggy brain. I endured all that and more while pregnant with Charlie so I can endure it again on a larger and more severe scale with kidney failure, no big deal. Somehow God provides me with enough energy to sustain me when I need it. And on those days when I am not able to do all the things, He has provided an amazing support system who picks up the slack. My mom comes over often to help me stay on top of laundry and cleaning and life in general, my co-workers let me ask them redundant questions when my brain fails me, my job schedule is flexible, I have my own personal workout coach who gently prods me to come and work out, and my husband allows me to sleep when I need it without a single complaint.
Somehow, things still get done. For instance, on Thursday this week:
I worked {as a pediatric speech pathologist}, and
got a flu shot {which caused the hypochondriac in me to start feeling flu-ish aches by mid-afternoon}, then
had a phone conference {which zapped some of my mental energy allotment}, then
vacuumed my floors and got a load of laundry started when I got home {with kids hanging on me like little leeches}, then
worked out at the YMCA {total beast mode}, then
went grocery shopping with both kids, and
gave in and let the kids have the ‘car cart’ {for once not being mean mommy by saying no}, then
crashed the big dumb ‘car cart’ into a display of sunflower seeds {because its turn radius is nonexistent}, knocking the display over and scattering the packages all over the aisle, then
finally got out of the store and put all the groceries away when we got home, then
put the kids to bed by myself because Chris was at band practice, then
fell into bed.
The end.
Evidence of the ‘car cart’ ruckus pictured below:
Not every day is that successful. Honestly, most of them are not. If I get a load of laundry washed and into the dryer each day then that’s a success, even if the load never makes it out of the dryer. I’m just too tired most of the time.
But I can still have adventures with my family and workout and handle toddler tantrums and play with my kiddos and supervise homework and work at a job which I love and volunteer at church and hang out with friends.
I’m sick, but I’m alive and life is still good. I can’t believe I’m able to do all the things I can do as my kidney’s fail. Each day I’m thankful for the joy and love and happiness that wrangle more space in my mind than the fear and anxiety and depression. Ain’t nobody got time for yucky vibes. God offers me peace and comfort daily, so I’m clinging to that as things progress.
Yesterday I spent all day at the hospital having tests completed (Echocardiogram, EKG, ultrasound, lab work, and x-rays), then Chris and I met with the transplant team and the surgeons.
The next step will be to try and find a living donor match before I have to go on dialysis. That’s where you all come in. The deceased donor wait list is approximately 5 years long, with nearly 100,000 people in the US waiting for kidneys transplants. I am praying bold prayers that God will provide me with a living donor kidney before I have to go on dialysis. Please share this post for me. Please pray for my future donor.
And please consider donating, even if it isn’t to me. You can read about “non-directed” organ donations and “paired” donations from UNOS { www.unos.org}, in which you can donate a kidney to someone who is waiting for a kidney transplant in the US, even though you don’t know them.
Potential living donor candidates for me must have Type O blood {positive & negative factors do not matter}. You can fill out the Health History Questionnaire if you are interested in finding out more and want to begin the process to see if you are a candidate.
{You’ll need my birth date, which is 05/04/1985}
If more than one living donor becomes available to me, further medical testing {lab draws and health exams} will determine which match is optimal for all parties involved.
Thank you for rallying around Chris and I on this journey. Sometimes I hear from people that they’ve forgotten I was sick, which I believe is a testament to how God has sustained me. I know He will continue to sustain me and will provide a living donor kidney for me. I’m speaking it out. And God hears and He will deliver. amen.
XoXo,
Ashley