Revisiting the Diagnosis

It's been more than two years now since I was diagnosed with Complex Regional Pain Syndrome. The road has been wrought with pain, and the pain has unearthed challenges in our parenting, rock-bottom valleys in our marriage, and scars beneath the surface that had prematurely healed over them. We've had close calls, almost-gone's, and so much unpredictability.

But we've also seen restoration in places we never would have imagined it, and God has given us new dreams in the place of the ones that are no longer ours to reach for.

In every step, through every heartache, and with every uninvited change, God has been present, faithful, unchanging, and good. He has been our strength, our hope, and our constant joy. He has provided for us, stretched us, and revealed our hearts. He has loved us with everlasting love. He has poured out undeserved and overflowing grace. And He has carried us through it all.

And, my friend, I know that you're not unfamiliar with pain. Because it comes with the territory of the soil we walk on. None of us avoids suffering in this life. But God sees you, wherever you are, wherever you've been, and wherever you will go. He knows just what you need, and He is strong to save. Nothing you walk through is outside of His reach, and none of it is for nothing. He makes beautiful things out of the ashes in our broken lives.

Pain comes with the territory_CRPS_Choose Joy

I never saw myself being a blogger.

But when we first got home from the four-day hospital stay during which I was diagnosed with CRPS, so many people had been pouring out love and support and were wanting to know how I was doing. It was incredible, but Sean was answering the same questions again and again and again, and I wanted to give him an easy place to point people to. A place where they'd be able to look to know what was going on with my health, in our home, and in my heart. So, I threw together a blog, and wrote a post to keep our loved ones in-the-loop. And that's when To Choose Joy began.

Today, I wanted to take you back. To remember what God has been doing from the beginning and to offer you hope that no step on your own journey is wasted. You are part of a story that is so much greater than what you can see from where you stand. So, here, my friend, is the very first post I wrote on my original To Choose Joy blog, shortly after we got home from that first hospital stay...

The Diagnosis, Part 1

(First published here)

My husband always says that dancers are the most graceful people on stage and the clumsiest people on the ground.

Choose Joy_CRPS Diagnosis_Walking through Pain_Dancer

Not one to try to prove him wrong and shatter his confidence, I rolled my ankle two Sundays ago. Walking. On flat ground. 

As a dancer and dance teacher, I am quite familiar with my feet and legs.  When I couldn't bear any weight on my right foot, but there was no swelling, I assumed that I had just injured a ligament or tendon, and I limped on until Tuesday morning.  I paid a visit to my primary care physician to play it safe (I need these feet for my job, and balancing three little munchkins on my hip while hopping on one foot was quickly exhausting my good leg).  The doctor said that it looked like I had torn a tendon and ordered x-rays to rule out a minor fracture, but while I was in the office, my leg began to turn uniformly purple from hip to toe.  I began to feel (and haven't stopped feeling, since) as though ice was being poured through the veins in my leg.  The doctor affirmed that the exterior of my leg matched what I felt on the inside: as cold as ice (can anyone else hear Kristoff from Disney's Frozen echoing his words?).  Strange.  So, he made me a follow-up appointment two days out.

We call this zombie-leg. And this photo was only the beginning. You're welcome.

We call this zombie-leg. And this photo was only the beginning. You're welcome.

By Thursday evening, the pain in my leg had increased exponentially, and the odd color and temperature remained.  My bones ached, my skin was chilled and felt like pins and needles, my tendons and muscles felt like they were being twisted, and my knee felt like it was on backwards.  Sean helped me hop painfully into my follow up appointment, and when my PA looked at my leg, she told me that we were going to need to head straight to the Emergency Department.  This had the makings of something much worse than a minor ankle injury. 

The idea of leaving our four-year-old, two-year-old, and 9-month old baby at home with a sitter overnight was the most difficult thought on my mind as we headed towards the hospital.  I had only been away from the older two once at night, and I had never left the baby, who was still nursing. 

At the ED, I was seen by two nurses and one of the residents, none of whom could locate a pulse in my right foot.  I had a venous ultrasound, an arterial ultrasound, and a CT scan.  The tests found an abnormal wave running through one of the arteries in my right leg, and what they suspected to be an AVM (arteriovenous malformation) in my upper thigh.  The attending physician said that this was beyond what he deals with in the ED, and we were discharged at 7:00am on Friday, with instructions to "come to the Emergency Department immediately if your leg turns purple in color or begins to feel cold."  These were odd instructions, considering that my leg was purple and cold the entire time we were there, but we were at least excited to get home to our kids. 

At home, my pain worsened and my toes turned from purple to snow white.  Worried that I might lose my leg altogether, we called a good friend to watch the kids again and then we headed back to the ED, this time in an ambulance. 

Within a few hours of arriving, I was admitted to the observation floor.  I remained in the same bed there for the next three days and nights.  I was seen by vascular surgeons, neurological surgeons, orthopedic surgeons, and physical therapists.  I had a second CT Scan, more x-Rays, an MRI, and lots of blood work. 

Finally, my diagnosis was confirmed.

First of all, I have an AVM somewhere in my upper thigh.  It's a connection between the artery and the vein that's not supposed to be there.  The artery spills oxygenated blood into the vein, and it causes congestion of blood to the area beyond it and can cut off circulation. They do not believe that this AVM is life threatening at this time, but should that change, I will need a very invasive surgery with, according to the vascular surgeon, "lots of cutting and muscle damage" because of its location.  The prayer is that the AVM will seal on its own, which is not unusual for an AVM to do.  We found out last week in a final report from Vascular that one of the three arteries in my leg is not functioning at all.  We will know more about that after an appointment this coming week where they will do a full ultrasound of all of the veins and arteries in my body.

Secondly, apparently unrelated to the AVM, and on a much more life-changing scale, I was diagnosed with Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD).  It is an extremely painful neurological disease, and it has no cure.  On a medical pain scale of 1-50, CRPS patients experience a constant 42.  Here is an image to give some perspective:

Choose Joy_CRPS Diagnosis_Walking through Pain_Dancer

CRPS is typically is set off by a minor injury or trauma (like rolling your ankle).  It starts in one area of the body such as a limb, and can spread throughout the entire body.  CRPS is expected to worsen with time.   If treated early enough, it can into remissions, or possibly in cycles of remission (i.e. three months on, three months off). The brain tells the body to stop using whatever part of the body is in pain, and, as a result, the bones and muscles begin to atrophy, often resulting in permanent damage and loss of functionality.  The effects of the disease can be potentially lessened by constant physical therapy and pain medication to work through the pain and keep the body moving so that if the disease goes into a remission, that part of the body can still function.

I currently can't walk, and can only sit upright for an hour or two at a time.  I am unable to drive, and we don't know if I will ever be able to drive with my right foot again.  I cannot be in a standing position for more than a few minutes at a time, because of the immediate congestion of blood to the leg.  My physical therapist has me taking approximately ten steps an hour with crutches, putting less than 10% of my weight onto the right leg.  I have to spend most of the day right now laying down and elevating my leg, and I have a wheelchair for the rest of the time.  I can't lift up my kids, or play with them on the floor.  I had to stop nursing Jack because of the necessary medications.  (After six days, he began taking a bottle and formula like a champ, praise God!). Sean is absolutely amazing, and has been working incredibly hard to take care of all of us.  We've been surrounded by love and blessing and help from family and friends and the church in unbelievably beautiful ways (more to come on all of this in another post). 

Because we caught the CRPS early, we will hopefully be able to minimize permanent bone loss and muscle damage through therapy.  And God is good.  I trust Him, and I will choose joy.  Because He is joy.  I know that He loves me, no matter what is happening.  I love how Job puts it when he is suffering, "Shall we accept good from God, and not trouble?" (Job 2:10b, NIV).  I know that I can do all things through Christ, my strength, and that my husband and kids can, too.  I know that God knows, and will supply, exactly what I need (Philippians 4:19), and what my husband and kids need, so I don't have to worry about how this is completely changing my ability to take care of them and do life with them.  He loves them so much more than I ever could.  Life is going to look different, and my God will be glorified!  We will pray for healing, and we will still praise Him if His desire is that we walk through this, instead of out of it, for His glory and our good.  He will be our strength.  Our hope is in Him.

"And we know in all things that God works for the good of those who love Him, who have been called according to His purpose," (Romans 8:28).  

And that was only the beginning of what has been and continues to be an incredible journey to choose joy. A journey that has been filled, step-by-painful-step, with the strength and hope of the very Source of joy Himself.

  • Where, in your own life, can you look back and see the way God has carried you through painful circumstances?
  • What did strength and hope look like for you there?