I have taken quite a long hiatus from writing here. It wasn’t intentional, at least not on my end. In January of 2021 I heard God telling me to be still and be quiet. When I first heard that, my first response was I heard Him wrong. I mean, doesn’t He realize who I am? I’ve never been quiet a day in my entire life.
I wish I could say I listened to Him straight away. But this girl has never been one to catch on quickly.
Eventually, I gave in and headed His prompts. I was still and quiet. I knew if He was telling me this, there was a good reason for it.
A month later my Dad got sick. The next month I had my third brain surgery. I got meningitis. My sweet, sweet Dad passed away. And I had another abdominal surgery.
God was preparing my heart for the hardest season of my life. I needed those quiet, still moments. I craved them. And in those moments, I found myself continually throwing myself at my Father’s feet.
I felt today, finally, God telling me it’s time. It’s time to get back on here and share.
I have anticipated this day for months. I worried about how I would make my entrance back. I worried if I would still be able to write. I stressed about what words I would say. I was so anxious about this post. But, now that I’m here, the words are flowing. That’s all Him y’all, not me.
While I was writing this a song came on that made me sit up and listen. Again, a God moment without a doubt.
There’ve been times I felt so all alone
But in my lonely hours
Yes those precious lonely hours
Jesus let me know I was his own
Through it all
Oh I’ve learned to trust in Jesus
I’ve learned to trust in God
I have always felt as if my biggest testimony comes in my medical journey. I think that is where He wants me to begin.
In the fall of 2011 I went in for a routine laparoscopic hysterectomy. One of the first cuts the doctor made hit a main artery. A 9 inch incision, 2 units of blood, 1 unit of plasma and 1 unit of platelets later I woke in ICU. I had nearly died during the surgery. And during the surgery the doctor also missed a huge cyst on my left ovary. Four months later I went in to have that removed.
During that surgery, the same doctor put a clip on my ureter and put a hole in it. Three days later I had emergency surgery for a kidney that hadn’t drained in days. They installed a stent, hoping that would help the ureter heal.
Over the next 7 months, I had 8 surgeries to replace the stent. Each one would get corroded and calcified and cause a kidney infection, which would knock me down. Finally the doctors at the Cleveland Clinic determined I needed a ureter reconstruction.
In October of 2012 I had a 14 hour surgery to repair my damaged ureter. While they were operating, they also found I had a partial bowel obstruction from adhesions and that was fixed as well.
The surgery was a success! But sadly, my kidney had too much damage done to it. It was no longer functioning at all and was causing more harm than good. In February of 2013 I had my kidney removed. It was a routine surgery but unfortunately I had a small stroke during it, awaking to a completely numb face on the left side.
Because of all the prior abdominal surgeries, adhesions were growing rampant in my abdomen. And we found out I have Adhesion Related Disorder. I’ve had five robotic lysis of adhesions, and it’s a surgery I will need for the remainder of my life every year or so. I’m having another one next month.
I found out in March of 2018 that I was born with Ehlers-Danlos Syndrome, a diagnosis that explains so much of my medical journey thus far. The EDS has caused Intracranial Hypertension (my body produces too much cerebrospinal fluid (CSF) and the pressure within my skull is too high). The Intracranial Hypertension had also caused stenosis of a vein in my brain, a partially empty sella, hearing loss, the loss of eye sight, memory issues and horrible daily headaches. And the stenosis of my right transverse sinus also increased my stroke risk (and explains the stroke I had during the 2013 surgery).
In June of 2018 I had a stent placed in my right transverse sinus, hopeful that it would reduce the pressure inside my skull but knowing it was up to my brain to see it as a solution. It didn’t. And in October of 2018 I had a Ventriculoperitoneal (VP) Shunt placed in my brain.
But because of having EDS, my body doesn’t heal quite right. And the incision in my abdomen from my shunt surgery didn’t heal correctly, and it created an incisional hernia. Not only that, but the hernia also pulled my shunt tubing up out of the right side of my abdomen and had it laying on my liver. I had surgery to correct the incisional hernia and a shunt revision.
In the winter of 2021 I realized many of my high pressure symptoms had returned. Through some testing and a visit with my neurologist it was determined I needed a new VP Shunt placed.
A week or so later, my Dad got sick and entered the hospital.
I had surgery in March of 2021 to replace my VP Shunt. The surgery went well, praise Jesus! But a week later I began to feel extremely sick. It seemed to get worse each day. It took me weeks to convince an ER doctor to do a bedside spinal tap. As I was afraid of, I had meningitis. I was transferred back to the hospital where my shunt surgery had been. I had three days of some heavy IV antibiotics and was released. Before being released, a CT scan was done. And they saw all of my abdominal shunt tubing was out of my abdominal cavity and sitting below my skin. Surgery to fix that was scheduled for a month later.
This was the same time my Dad entered a nursing home. At least now we would be able to go visit with him. Because of the hospitals Covid protocol, only my Mom could visit him there. My kids, my husband and I got to spend some precious time with him. Time we will always treasure!
My Dad was placed on hospice care the Friday before my scheduled abdominal surgery. He went home with Jesus two days later. I somehow was able to call on a Sunday, get the right person at the hospital, cancel my surgery for the following day, and get it rescheduled for the following week. Another God moment!
To say those months were hard, and scary, and taxing is putting it mildly.
But, God.
And as I’ve said numerous times, God has me on this journey for a reason that is precious and perfect. And while I may not know His reason, I will praise Him in the midst.
Throughout this entire journey I’ve been reminded time and time again of God’s extravagant love for me. In the darkest places, I found Him there with me. Speaking to my heart. Speaking life into the hurt places. I’ve learned what it’s like to seek and find Him. I’ve thrown myself at His feet in a teary heap, time after time. Sometimes moment by moment. I’ve learned that even in the hard times, He gives us enormous blessings. I’ve learned joy doesn’t come and go with our circumstances. But joy can be experienced despite our circumstances. Joy is a fruit of the Spirit, second only to love, it flows from God, not circumstances. We have a fundamental need for joy in our lives. Life without joy is overwhelming, depressing and just plain sad.
God loves all of us extravagantly. And He’s not finished with a single one of us. The fact is, He has a sovereign plan that is for good and not evil. For joy and not sorrow. He is writing a story of on-going redemption with each of our lives. Our lives are woven together through seasons. It’s one person’s season to experience this. And another person’s season to experience that. Neither is loved more. Neither is more dispensable.
Ecclesiastes 3:11 sums up what I’ve felt in my heart in a few simple, powerful words: He hath made every thing beautiful in his time.
His time. His time. His time. HIS TIME.
Joy comes in knowing Jesus, experiencing His presence and trusting His timing. Joy comes when we fall more in love with the One who loves us most. To experience joy is to experience Jesus.
So many times we want joy, but not trails. We want faith, but not testing.
Y’all, I’m going to be honest, I’ve thought many times how much easier my life would be without pain, without surgeries, without loneliness, without heartbreak and without financial hardships. As crazy as it sounds, I wouldn’t change a thing.
God often uses the hard to refine us. To transform us into the person we were created to be in the first place. More like Him.
If you are going through a hard season of trials, I encourage you to find joy in the midst of the hard. While it isn’t always easy, it is always worth it!
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