Better and better
“But I will restore you to health and heal your wounds,’ declares the Lord,”
It’s been a month since Cindy went to the Dr. and time for a Cindy update.
Pain. The new pain caused by the piriformis syndrome has diminished to near zero! Once or twice a week it will reappear, but is manageable with normal pain meds.
Walking. Cindy has walked every day over 8,000 steps (Google estimates it to be about 3.5-4 miles).
Bone Stimulator. Cindy has achieved 100 % compliance in wearing the device two hours each evening. It’s hard to tell if it is doing anything as it makes no discernible noise, heat, movement. We, however, did go to Wal Mart while she was wearing it and it interacted with the check out system and confused the computer (see the video below).
Back Brace. Today is Liberation Day, the last scheduled day she is supposed to wear the brace. Just 2 hours to go. The pain in her back muscles has increased as she begun to wean off her brace. Each week she has been following the scripted plan to reduce its use and to increase back strength.
Physical Therapy. Next week she is supposed to start PT to strengthen her core muscles and help protect her back.
Sleep. Most of the discomfort still happens at night making sleep more elusive. That is our prayer main prayer.
Next update. June 27th following her next Dr visit.
Cindy’s last x-ray shows a slight unevenness in her hip height creating a slight curve in her back. Not sure what she will do about it.
Listen to the clicking caused by the bone growth stimulator when Cindy gets close to the register.
This cat often sits at the entrance to the Cain Center where we frequently walk. Lance gave here the name” Marmalade” on one of our walks. We have gotten to expect her to sit and greet us almost every day.
When ever Cindy approaches she tends to act as cute as possible.
On the opposite fence occasionally another cat appears. We call her Apricot.
Growing Strong
Cindy at Oak Alley, Louisiana
It’s been 12 days since Cindy’s last Dr. visit. Her back continues to grow strong. Her nerve pain in her leg is growing more quiet. It returns after long days and at random moments like a strong wind on a clear day, but it is slowly retreating and life seems to be returning.
I wrote on March 3, “Applying the same logic to Cindy’s pain, it appears that while the pain keeps returning, it returns at a lower value. If we plot the pain, the trend is that it is halving approximately every 14 days. If that trend continues, it will reach a “nominal” range in about 6 weeks. That means she still has lots of suffering, but with a glimmer of hope.”
The lots of suffering was correct. The diminished pain was also correct.
The accumulation of time, treatments, and tablets and the miracle of God’s healing has brought Cindy to this moment.
She is walking 2 miles a day, if not more. She has fully returned to work. She wears the bone stimulator every day for two hours. She is growing stronger every day, She is a champion.
Assuming the trends continue the next report will be in a few weeks.
Late night in Alexandria, LA trying to get in our steps before bed.
This possum came running out of the bushes and I saw Cindy move really fast.
Deviled Eggs for Cindy’s birthday.
More picks from our step journey.
The dogs discover geese for the first time.
This is the way Oak Alley looked, in 2021 before hurricane Ida ripped through the area.
It is going to take years before the “alley” is full and lush again. Cindy looks like she is going to do it in just a few months.
Three Prayers
Cindy had a follow-up visit with the Doctor on Thursday here is her healing update.
Pain. She woke up on Thursday with no pain in her left leg, but it returned later in the day. The pain has not spiked above a 4 for about a week, so the projections are still looking good that she might become pain-free in the next few weeks.
Our prayer is that she can go a whole day with no nerve pain in her left leg.Healing. In four weeks she will have a detailed follow-up x-ray to check on the progress of the fusion and the alignment of her back and hips. In one of the early X-rays there was a slight tilt that we are praying was just an artifact of alignment during the imaging.
The doctor was encouraged by the strength of her walking and was complimentary of the amount of walking she has been doing. “You are doing way more than most of our patients.”
Our prayer is that the bone stimulator will help increase bone growth and strengthen the fusion.Meds. She has dramatically decreased her meds. She is only taking a few now, but sleep continues to be elusive. If she turns the wrong way the pain returns and then sleep is difficult. The doctor reviewed her meds and was amused when Cindy told him about the trouble sleeping. The meds she has been taking generally knock people out - she has a very high tolerance for them and pain. The smile on his face was priceless as he grappled with understanding Cindy a little more than he had before.
Our prayer is that she begins to sleep uninterrupted through the night and use nothing but over-the-counter medicines by her next Doctor visit.
The best walk since surgery. Lance came in for the day and the 6 of us got to spend time walking through the Cain Center.
Don’t Count your Chickens
Cindy in the Unitas Mountain Range on the way to Kings Peak, the Highpoint of Utah.
On Monday we traveled to Frisco to take some steps for Cindy’s healing.
First, we picked up the bone stimulator.
We had a simple orientation on how and when to wear the device.
Then we headed for the pain injection.
After a brief visit with the Doctor said he was ready to schedule our return appointment to get the treatment. We were a little stunned. The referral paper clearly showed that the was to get the shot on the first visit. It is a 5 hour round trip. I sat on my hands and breathed deeply. Cindy tried again pointing out the plan and her communications with the office.
The Doctor explained that there was no anesthesiologist available or x-ray technician to help. Cindy again then appealed to the Dr. who looked again at the papers. Then he said, “Let me do some checking.”
Cindy and I discussed that while we were frustrated It didn’t look like we had any choice.
Then the Doctor came back and said he had a plan. They had been cross training their staff and the man working the front desk could operate the x-ray. Unfortunately, there was no anesthesiologist, but she could get the shot with just local numbing. It would be uncomfortable.
Cindy chose the shot right then and there. She is so much braver than me.
After quick preparation and a numbing shot he put the injection in the piriformis. I waited in the other room.
He said that people normally get numbing impact of the anesthesia that Cindy would not get, but in 4 days it should help.
We got home, took a walk and then Cindy put on the bone stimulator. We read the book and for the first time understood the routine. Wear it 2 hours every day for 270 days. I means that she has to wear it until January 1, 2026. The statistics of the medical trial for the device are very convincing that it makes a huge difference in long term healing.
Sleep did not come easily for Cindy. The shot had not yet alleviated the pain. The shot had brought new pain at the injection site. Her leg hurt worse than usual, mostly form being int he car so long.
We are praying that eventually it will have been worth it.
Click the image to read about the treatment
Crawl, then Walk
Cindy meets a new friend at Gülhane Park in Istanbul.
Last Saturday, we were waiting for the next steps in the healing journey. We woke up each day hoping that the process would move forward. The week has ground past with phone calls and waiting for others to decide if they want to help.
This has been a discouraging learning process for us - we can’t imagine what it must be like for people without insurance, without voices, without resources to fight back against the “machine.” Cindhy has been a champion and has kept her cool and me far away from the phone. I feel a lot of sympathy for Jesus turning over tables in the temple and am ready when Cindy calls me.
Our Doctor ordered an injection that could help Cindy - it is finally scheduled for Monday the 17th. Why have to suffer 11 more days of pain?
Our Doctor ordered a bone growth stimulator - she was supposed to start it 3 weeks ago. She will finally get it on Monday the 17th. Think of how much further along her healing could be if we had those 21 days back!
Our Doctor ordered a back brace that Cindy must wear for 2-3 months. It was delivered to us in the hospital. We were told that we owe $4,000 for it because the doctor’s office didn’t code it correctly. I could buy the same brace from Amazon for $150. Why does insurance pay $3,850 over the normal price for this item? What a mess!
PAIN. On Thursday (3-13), Cindy woke up, and we followed our morning ritual.
“How is your pain?” I asked,
“If I stay completely still, it is ZERO.” She whispered, not wanting to awaken the sleeping beast.
It would be impossible to stay in bed the rest of your life, but after 44 straight days of pain, Cindy was considering it.
Eventually, biology, life, and responsibility prodded her out of her protective cocoon.
The beast awoke but crept around at about a 3 on the pain scale - irritating but making it possible to function.
All this week, Cindy has begun returning to work. Each day staying longer. On Thursday, she worked 9 hours, and her work ethic tendinces were showing. Each day has had its challenges, but there seems to be light at the end of the tunnel.
FOOD. A host of people have fed our family over this journey. Since the food train reached the depot and we have returned to our normal responsibilities, it is amazingly clear how powerful the simple gift of a meal is. Thanks to all who helped carry the load for us.
MEDICINE. Cindy has been weaning off most of the medicines. She is now taking mostly Tylenol instead of the more serious pain meds. This is a relief because we have heard so many terrible stories that begin, “The got hooked on pain meds after back surgery . . .”
DRIVING. On Friday, Cindy was given clearance to begin short forays behind the driver’s wheel. This afternoon, she will put the pedal to the metal.
“I’m just laying in bed resting & enjoying not hurt in this morning.”
Cindy has been walking each day at the Cain Center.
The dogs have been constant encouragers in this process. They do seem aware and a sensitive to Cindy as she is laying on the couch. They nuzzle her tenderly.
The signs of Spring!
TWISTING IN THE WIND
Cindy watching our family play Pickleball because her back would not let her play.
The last 10 days have been complicated.
Most of the days have been fairly good. Cindy has been able to get to work for a little of each day. Her pain has been present but not debilitating. We were hopeful. I have been gone, and lots of people stepped up to help. We were hopeful.
Cindy had a doctor’s apt on Thursday. The wind shifted.
Recovery from the back surgery is way ahead of schedule. Her walking is in the 95%. Her incision is healed. Her back seems strong.
Her new left leg pain. We got a revised diagnosis.
While the situation looks like piriformis syndrome, they have returned to the original diagnosis—swelling caused from the surgery is constricting the sciatic nerve, causing pain to scorch down her leg. (On the positive side, if general inflammation is the problem, then recovery will follow a decrease in the swelling. If it is piriformis, then the recovery process is more complicated. Both are treated the same).
Since rest and medicine have not brought it into control, the next step is an injection. It needs to be administered by a doctor using a specific type of imaging to be precise in the placement. We are awaiting a call from the Doctor to whom we have been referred.For some people, the shot brings immediate relief. That is our new prayer.
Friday was the worst day Cindy has had in two weeks. The pain spiked as was significant all day. We tried all our methods: rubbing, pain meds, walking, resting, but we could never get it under control. Lots of tears and discouragement. It felt like a huge step back.
Saturday. The pain has been better today, but never zero.
“When we long for life without difficulties, remind us that oaks grow strong in contrary winds and diamonds are made under pressure.”
Return
I’ve been traveling, and Cindy has been managing at home with the help of Logan and a host of friends.
We wish that we could say that her progress has been consistent and positive, but it has been uneven and twisting. Some days, she is marginally better; other days, the pain forces her into retreat. In my dissertation 30 years ago, I applied trend line analysis to column inches of the Journal of Pastoral Theology in an attempt to discern predictive patterns based on a previous work, Megatrends.
Applying the same logic to Cindy’s pain, it appears that while the pain keeps returning, it returns at a lower value. If we plot the pain, the trend is that it is halving approximately every 14 days. If that trend continues, it will reach a “nominal” range in about 6 weeks. That means she still has lots of suffering, but with a glimmer of hope.
“But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”
I did not grow up in a Bible memorization home, though I did begin that process while I was in High School. So it was fascinating when Cindy and I started dating and she shared her “life verse” was Isaiah 40:31. It speaks of hope, struggle and effort. Right now we are in the walking phase. Cindy has been walking every day, thankfully volunteers have come to walk with her because we are not ready for her to walk alone,
It is hard to believe right now that she might run. That seems far away, but are trusting in God’s timing and the miracle of healing and that one day she again might run.
That continues to be our prayer.
Tension
Sat night Sleep score. B- good sleep until 5AM. Then high pain until about 11, but never over 6.
Watched church on TV
Spent the day getting ready for Kyle to be gone for 11 days. Going through the meds. Rearranging furniture. Going for a long walk.
We are both nervous.
We saw geese on the pond for the first time in a long time.
This yellow cat has greeted us in the park the last two days and followed us. Our dogs have been curious. The cat tries to hide behind things but they are never big enough.
Step by Step
Last night B-
(Low level pain, disturbed sleep)
Friday: Two walks one really long in the park.
She went to work and began the on-ramp process, then some lunch and pain meds which meant back home and a nap.
We spent the morning trying to figure out a new med schedule that will give her more alert hours during office hours so she can start back next week.
I’m preparing to be gone for 11 days on 3 back to back ministry trips. We are both a little nervous.
Uneven
Cindy in Wadi Rum, Jordan
Friday morning
Last night was a C+ (the score has gone down each of the last three nights) -consistent pain to the level of sleep interruption. If it keeps going down we will be headed to another bad attack. Praying that it does not get that bad again.
One cold walk this morning (we had a friend go with us yesterday! See photo below). Talked to the mailman and the gas workers. Fiber is coming to the neighborhood!
I took Cindy to the office so that she could try to resume some work. Mostly getting back into the information superhighway of church happenings. We started so she could have about an hour and a half during the day while she is at her most alert in her medicine regimen.
Not sure if she will come back after lunch, but some progress.
Ready for the Thaw
“Weeping may stay for the night, but rejoicing comes in the morning.”
Cindy in Cappadocia, Turkey - Indiana Cindy
Morning report.
Restless sleep, some pain. If we gave the night a grade it would be a B-, but way better than an F.
Ready for better days, praying for full recovery. Thankful for the beauty around us in the world and in the people that God has put in our lives.
We go to sleep each night wondering if the next morning will be the change we are praying for.
Will it happen all at once or will be gradual?
Will we know when it has happened?
What do we need to do to get her out from under this?
We wake up each morning with questions and hold on to the bright moments of each day, like the intricacies of a snowflake, the patterns of frozen water, the warmth and crackling of a fire, the expectant looks of our dogs and the delight of holding hands and walking down the road.
Not Consumed
“Because of the Lord’s great love we are not consumed, for his compassions never fail.
They are new every morning; great is your faithfulness.”
Cindy Kayaking in Alaska
Just an early morning report.
The second night with only about an hour of pain disruption. 8:30 of sleep on 9:30 in bed.
But the pain has surged this morning to about a 5.
It seems to be pressure sensitive and trigged by sitting. So as long as she does not sit its is able to be kept at bay.
Unfortunately, there are times in life in which sitting is required.
We are headed for walk #1.
19° but feels like 3°
the Cindy Coaster
Cindy in the front seat of a small plane flying us to the Masa Mara in Kenya.
The roller coaster has been real the last couple of days and it’s been hard to get our hands on the situation.
Sun Night-Monday Morning was not great. Lots of pain, lots of sleep interruption.
Cindy got up on Monday at 4:30 AM I got up at 6:00 AM and tried to help by massaging her ankle (the pain sinks to that spot and she can’t reach it).
We have finally figured out that one of the muscle relaxers she is taking helps the best and after she takes it she frequently enters a low pain high sleep zone.
Later in the morning, she asked through the pain, “What is my goal?”
That was a triggering question. Right now we are just tying to survive, but that is not a good plan.
Slowly through the day we have come up with 2 daily goals:
Cindy gets 10 hours of sleep. This seems to be the #1 thing right now. While she is asleep she is not hurting and her body can give most of its energy to healing.
Cindy walks around the block in our neighborhood 3x a day (2,397.22 ft - about half a mile each time). To get the excess blood and swelling out of her body, we need her to move.
We have readjusted her meds and are following a better evening distribution to help accomplish the sleeping.
The other thing we decided was to learn more about Piriformis Syndrome. We read several different medical sites and then we watched over an hour of teaching videos. Of course, we know to evaluate the sources and try to weigh the different information. Lots of doctors have shared information and they agree about most things. So that feels good. It helped us get a sense of what we might do to help the healing process.
On Monday night we got ready for bed early as Cindy was tired and worn out.
She fell asleep at 9:30 AM and got out of bed at 9 AM. During the middle of the night she was awake at 4 AM for about an hour.
It was the best night of sleep in about a week.
Today, Tuesday, we have had a good day. We met the walking goal twice, but the rain interrupted the 3rd lap.
The pain has been manageable. On a few occasions, it has hit about 7, but mostly 5 or below. Twice during the day, Cindy thought that it was at 0.
We have tried not to celebrate, not sure what it means, but thankful for the fleeting mercy.
I’ve been watching this Tulip Tree. I’m worried about it. I think it has overestimated the spring.
Another tree in the neighborhood. It’s really confused.
In an unwatched moment I took this of Cindy. The pain was about 6 at this moment, but she was walking through the pain.
Flowers, notes and prayers have been so encouraging.
The pink has begun to appear and the freeze is coming tonight.
Another one even more opened.
This is the furthest she has been away from us, the dogs got distracted and she kept walking. The pain was about 2.
Square One
Cindy at Baylor Homecoming. Our first date was there, 16,220 days ago.
I keep trying to find ways to give people updates without it being just a depressing rehearsal of the day. I keep praying that I will have loads of good news to share.
This is not that post.
Yesterday (Saturday the 15th) started very early with a pain siege. Cindy was up by 3 or 4 in the morning. We tried everything that has worked in the past, but nothing seemed to work. We felt very thankful that the pain never reached the highest levels it had last week, but it was still terrible to watch.
Last Saturday it had gotten so bad that we headed to the ER in Dallas and the pain broke just 15 min before we arrived. We got new meds and end up with a couple of good days. We thought that it might be the sign of things improving.
The pain siege that started yesterday lasted all through the day never yielding to zero pain. She is faithful taking the meds, thought both of us are worried about addiction and dependency. At times she has chosen not to take some of the pills. In an attempt to be brave and strong she did not take the maximum dose each time, but then the pain would increase and we would get on a bad spiral. So the rest of the day she took the full does each time.
At the lowest point of pain she got up because her body is so sore from lying down. She walked, she stood, We got a mattress topper of memory foam to see if it might relieve the pressure points.
We have a puzzle set-up on our tall table to give her something to do and a reason to stand and a distraction from the pain.
In the evening I was getting dinner out when I heard a sharp sound and then her voice calling for help. I rushed to find her slumped against the wall trying to keep from falling to the ground. I was able to get to her and stabilize her. Logan came rushing in from the other room and brought over the walker. We got her upright and then slowly together moved her to a chair. All of our hearts were racing as we took inventory. It did not appear that there was any damage, but we were all shaken up.
Cindy’s left leg was so weak from the pain that it just gave way under her.
We eventually had dinner and then began preparing for the night. We don’t know why, but it is always worse at night. We were both dreading the darkness. Since the pain had never gone away we were certain that it would try to take her while no one was looking.
Sure enough she took the hydrocodone at 10 which would knock a normal person out for hours, but only dulled the pain for about an hour. She woke up and tried to hide from the pain by not moving or acknowledging it, but it kept coming. She finally woke me and I got ice packs, and began rubbing her calf and ankle. I turned on the TV - giving her something else focus on has helped some, so we have been rewatching all of the Crown, it also keeps me awake because it is easy for me to fall asleep. After about 45 minutes we got the pain down to about 4 and she thought she might fall asleep. It was about 2AM.
I fell asleep within seconds thinking she would do the same. The alarm went off for her 3AM meds and I woke up. She had not fallen asleep- she was crying from pain and fear. What if this never gets better? This is way worse than any of her back pain? Have we ruined her life? What can we do?
She was able to take two pain pills. In the past they have usually taken about 20 minutes to dent the pain. We watch some of the Crown, we rubbed her legs and prayed for relief. At 45 minutes nothing had changed. After an hour she got up, She took a hot shower to see if it might help. At about 5AM she got back into bed but sleep never came. At 6AM we moved to the couch where I can sit with her foot in my lap and massage her ankle. She ate some food, took more meds and about 6:30AM she finally fell asleep while I held the Theragun on her calf and rubbed her ankle. At about 7 AM the Theragun gave out. At about 7:30 AM I slid her foot out of my lap and cuddled up on the love seat next to her covers up with a quilt and listened to her sleep.
At about 9:30 AM I woke up and heard her voice. She had missed her 9 AM meds while we both slept. She took that dose. I fed the very confused dogs who keep trying to touch her and are wearing out the carpet near us making endless circles trying to find the right place to rest. Thankfully she slipped back into a fitful slumber.
I’m sitting next to her watching her and praying for her. Somehow this is the place and posture where she is able to find some relief. It is a drug induced haze. It is not good. It is still very scary.
“When I was in distress, I sought the Lord; at night I stretched out untiring hands, and I would not be comforted.”
Psalm 77
1 I cried out to God for help; I cried out to God to hear me.
2 When I was in distress, I sought the Lord; at night I stretched out untiring hands, and I would not be comforted.
3 I remembered you, God, and I groaned; I meditated, and my spirit grew faint.
4 You kept my eyes from closing; I was too troubled to speak.
5 I thought about the former days, the years of long ago;
6 I remembered my songs in the night. My heart meditated and my spirit asked:
7 “Will the Lord reject forever? Will he never show his favor again?
8 Has his unfailing love vanished forever? Has his promise failed for all time?
9 Has God forgotten to be merciful? Has he in anger withheld his compassion?”
10 Then I thought, “To this I will appeal: the years when the Most High stretched out his right hand.
11 I will remember the deeds of the Lord; yes, I will remember your miracles of long ago.
12 I will consider all your works and meditate on all your mighty deeds.”
13 Your ways, God, are holy. What god is as great as our God?
14 You are the God who performs miracles; you display your power among the peoples.
15 With your mighty arm you redeemed your people, the descendants of Jacob and Joseph.
16 The waters saw you, God, the waters saw you and writhed; the very depths were convulsed.
17 The clouds poured down water, the heavens resounded with thunder; your arrows flashed back and forth.
18 Your thunder was heard in the whirlwind, your lightning lit up the world; the earth trembled and quaked.
19 Your path led through the sea, your way through the mighty waters, though your footprints were not seen.
20 You led your people like a flock by the hand of Moses and Aaron.
I filmed this walking along the shore of the Bosporous in Istanbul. I did not intend to walk with this boat, but as I started, it came into my frame. The slow thumping of the engine we intriguing. At first I was walking with the boat, then next to it, then eventually it outpaced me. That is a lot like our faith journeys. Sometimes we are ahead, sometimes right in step, sometimes it is our ahead of us.
The Psalms have long guided God’s people. We need the psalms in times like this. When you pray and pray and nothing happens. When it feels like God is letting us down. When Satan has the upper hand. I relate to the charge - has God forgotten to be merciful?
I’ve been wondering if this is a consequence of my new job. I just helped found a new Global Evangelism Coalition with other leaders from around the world. Satan would like nothing better than to derail the emphasis of telling the whole world about the love of Christ.
But we have not forgotten the cross, the resurrection, the miracles, the parted waters. We have not forgotten the many joys, the answered prayers, the years of faithfulness and while we wear God out by asking for relief we ask in faith.
Cindy and I still are playing Pokemon Go. My buddy in the game right now is Eevee. It was an encouragement to have him come and sit with Cindy.
What Kind of Day
I was cleaning in my office and trying to shelve my books when I came across a children’s book that somehow had gotten into my library.
I sat down and read it again. Alexander and the Terrible, Horrible, No Good, Very Bad Day is a classic children’s book written by Judith Viorstand illustrated by Ray Cruz. It tells the story of Alexander, a young boy who wakes up to find that everything is going wrong.
From the moment he gets out of bed with gum stuck in his hair, his day only gets worse. His breakfast is disappointing, he loses his best friend, he gets in trouble at school, and even his lunch and shopping trip with his mom don’t go as planned. Throughout the day, Alexander complains and repeats that he wants to move to Australia, believing things would be better there.
By the end of the book, his mom reassures him that everyone has bad days—even in Australia. The story humorously captures childhood frustrations and teaches that bad days happen to everyone but things eventually get better.
Inspired by the book I made a few images of our own.
Cindy woke up in the morning and had tons of pain. When Walmart opened I went and bought a few things that the Dr. thought might help with pain, Lidocane patches, and Voltaren. We tried them both along with a long session of leg massage. Finally, about noon she was able to fall asleep.
21 Hours
Cindy on the top of St. Peters in Rome
On Thursday afternoon we took a long walk and made a plan.
We have several values we were trying to balance:
Sleep - the #1 healing activity for Cindy
Less Stress - this one is for Kyle
On-Time - we needed to check in at the Frisco hospital at 7:45 AM
Therefore, we decided to drive back to Frisco on Thursday night and stay at the hotel near the hospital. There was less traffic at 8 PM and that would make a more pleasant, less stressful journey. Even if there was bad traffic and slowdowns on the roads, we would arrive eventually at the hotel with a lot less chaos. Cindy could get in bed a little after 10 and then did not need to get up until 6ish to be ready to be at the hospital right at 7:45 AM. We executed the plan.
The morning broke bright, clear, and cold. We both dressed in Valentines red and put on our best smiles.
We arrived at the hospital with high hopes.
We were first on the schedule so we only waited a few minutes in the lobby before they came to get Cindy. Gosh, this day is going great!
I sat on a couch and my mind drifted and I listened to all the sounds around me. There was a TV in the waiting area, but too far away to hear distinct words. It sounded like a Charlie Brown cartoon. There was a door about 20 feet away that sounded like a rifle cocking every time it flung open, which was often. I tried to get my body not to react, but I never could get the tension reaction to stop. Several times the squeegee-like sound of wheelchair tires came sliding past me. All in the area where the whispered conversations of fear, concern, and conspiracy. Then there were a nurse’s shoes that made the sound of dying balloons each time they touched to floor.
The rifle went off again and Cindy appeared out of the starting gates. Cindy pulled out a yellow post-it note and with triumph in her voice, she said, “The MRI has been approved! I just need to call this number and talk to scheduling.”
We dialed the number and talked to a very confused woman. She did not have the approval. She tried a few things and still no approval. The people who gave Cindy the Post-it note were sealed behind this big metal door. It looked like another dead end.
We were supposed to take a copy of the scans and X-rays to the Doctor and so we had to go through the process again to find the check-in nurse to get the disks so we could leave.
The meds make Cindy a little loopy and she forgot to tell me that the scan tech had shown her a piece of paper with the approval on it. We needed to get to that document. We called our Dr. office and told them we would be late, they said they would be waiting for us.
We started over at registration. They took us to a cubicle. We told the story again. This guy started making calls. Talking to the people we had talked to already. He called our Dr. office. No one seemed to know anything about this sudden approval. After an hour we gave up without anyone ever talking to the scan techs.
With a scan and an x-ray on a disk, we headed to the office. We were late, we only had partial information, but we were ready for some answers.
We turned in the disks and waited while they looked them over. They brought us back to an exam room. The monitor was aglow with pictures. Sasha carefully showed us the site of the surgery and that the “cages” and screws were all in place. The bones were all in alignment. Everything looked great.
Then we turned to the left hip and leg. Sasha was a little hot. They had not done the correct X-ray. They were supposed to cover the hip area, but they only got pictures of the back. The X-rays were useless.
We all gripped. She showed us the orders. The word “LEFT HIP” jumped off the page. No medical jargon, no unclarity, just simplicity. The techs had ignored or overlooked the order.
We went forward with the appointment. Looking at Cindy’s movement, strength, and flexibility. She passed all those with flying colors. We reviewed her medicines and made a revised plan. Then we turned to the new pain. After the physical exam and the scan, they feel confident that it does not have to do directly with the surgery.
It is most likely blood pooling putting pressure on the nerve and it should resolve with time OR
It is Piriformis syndrome which has a similar profile.
Other GI problems are a result of the general trauma of the surgery and again will work themselves out in a few more days or weeks.
We asked lots of questions and felt better about most things, but still have that nagging feeling of uncertainty.
We left the parking lot and got a call back from the Dr office we had just left because we had all forgotten to check on our refill status. We stopped in a random parking lot and sorted through the pills, thankful that no police drove up next to us and wondered why we had so many pills.
We headed back to the hospital. We checked in at the desk and showed them a copy of the printed orders. There was some head-scratching, but no apology. Eventually, she disappeared back into the fortress and they took more X-rays. Again we got them on a disk.
We decided it was Valentine’s Day so we stopped for a late lunch (it was now 12:45 PM). I took her to a great BBQ place (high-protein) inside the HEB (only the best for my girl). Then we headed to the doctor’s office to drop off the X-rays and started the long journey home.
While on the road home, the pharmacy called to say they did not have the medicine to do the needed refills. So we called around to find the meds, get new contact information, called the doctor’s office again, and gave them a new place to call in the prescription.
We got back to Athens at about 4 PM.
We had a few good answers
We had tried to laugh at all the Keystone cops moments
Cindy has not had any pain meds since 3 AM!
The fortress door partially opened.
The fortress door slammed close.
Things in Dr Cattorini’s office
Things in Dr Cattorini’s office
Baby Steps
Cindy in Iceland. We wish this Viking could sort out our insurance woes.
On the bright side.
Cindy walked around the block holding my hand. We went slowly, but the Dr said it was OK if she was confident in her steps.
The Occupational Therapist came and evaluated Cindy and said she was at the very top of all the measures in her recovery.
On the dark side.
If we could only figure out how to solve the new pain in her left leg.
It has taken me nearly 24 hours to cool off enough to write about this.
On Wednesday afternoon our insurance company denied the request for scans.
They called after 5 which made it nearly impossible to appeal the decision.
We talked up the chain, they want more X-rays, more evidence that we have tried other things, and to wait 30 days.
They said they might reconsider if our Dr called one of their doctors “Peer to Peer.” It seems laughable to me that some person sitting in a cubicle at an insurance company is going to tell our Doctor what is needed for our treatment. Beyond that, our Dr. is at the top of the profession and has very few peers. If you are interested see this write up about him.
On Thursday after lunch, the insurance called and said they were going to give us permission for 1 but not both of the scans that our Dr wanted to do. Instead, we need more X-Rays and to stand on our heads and whistle “Please, please, please” by James Brown and The Famous Flames (1956) before they will consider looking at the area where the massive amount of pain is occurring.
I told the insurance non-helper that I wanted them to come spend the evening with us while Cindy was in pain and tell me why we don’t deserve help. They declined.
So now we are headed back to Frisco for a scan at 8 AM on Friday, an X-ray to follow, and then to meet with at the doctor’s office (he will have to zoom in because he will be with his family dealing with his Father’s Funeral. (We are both so mortified that our insurance continues to treat our medical team with such dishonor).
“Woe to those . . . who issue oppressive decrees, to deprive the poor of their rights and withhold justice from the oppressed of my people, making widows their prey and robbing the fatherless.”
Bundled up before our walk.
Limbo
Cindy on a snowmobile in Iceland
The night was not great, more pain.
The weekend had been great and now the leg pain when it comes creates anxiety as we ask, “Is this going to get worse and go all the way back to 10?”
Cindy was visited today by a nurse and a physical therapist.
We had chicken pot pie for lunch. It was amazing comfort food. Why are we not eating this every day? Well there is the crust and carbs, but WOW. Thanks to the food pixie that dropped it off for us.
There are many other problems with Cindy’s recovery and we can’t tell which ones are temporary, which ones are connected to medicine, which ones will need further intervention. Each day we feel like we are being tumbled in an industrial dryer.
We just talked to the Doctor.
Found out that his Dad died the day before the surgery. It’s been a difficult time for him as well.
He thinks the problem is post-op bleeding. We had sent pictures of Cindy’s abdomen and he said she was bruise prone, which we knew. Assuming this is the problem it will take some time for the bleeding to dissipate. It is what is likely putting pressure on the nerves. He said he was fairly confident due to three things. When it happens it happens on the left side, it occurred 2 days after the surgery and her bruising profile. He said, “You are going to get through this.”
We are going to do the scans, but they are still all tangled up in the insurance/approval gears. He said for our peace of mind and his.
Due to his funeral schedule & the scan plan we will probably not go to see him on Friday, but it will have to move to next Wednesday. That is disappointing.
The Doctor is very good even on the phone - confident, compassionate and caring. We were so touched by the reality of the grief in his own life and yet he kept the surgery on track. It explains several things and we have lots of grace for moments when it looked like we were being overlooked when in fact he was just trying to survive his own life complications.
“Therefore encourage one another and build each other up, just as in fact you are doing.”
Cindy loves puzzles and it helps keep her mind off the leg pain.
I needed a tall table so my chairs gave me a lift.
Cindy was cleared to walk without the walker.
Home again
Cindy during Snowmegedon
We arrived home in time for a late lunch. The dogs were thrilled.
Scanned the chaos in our bedroom we had caused by packing in such a fury, but decided to tackle that problem later.
Checked the mail and then rushed to get something in the mail that we had intended to send on Monday.
Cindy started a puzzle on our very tall puzzle table as a we to incentives standing up and not going to the bedroom to fall asleep.
Struggling with bouts of pain, but none like last week.
Lots of other distress as her body sorts through the whirlwind of surgery, travel, medicine, and anxiety.
Both walking on eggshells praying that we have crossed an important line of recovery.
Retreat
Tuesday, Feb 11, 2025
8AM
Cindy at Paddington Station, London
Short of a miracle this morning, we will be heading back to Athens today.
We have been trying to asses if coming to Frisco on Saturday was a good idea since we were not able to get the tests we think Cindy needs.
When we left Athens on Saturday Cindy’s pain was off the charts and had been for hours. It only relented 15 minutes before we arrived at the ER. Did the drive help? Did action help? It certainly helped both of our minds. Taking dramatic forward steps to solve the problem felt so much better than the black hole of suffering at home. So that was a success.
Every time we wavered we could look out the window and see the hospital. This gave us so much peace of mind that if the terrible pain came back, we could act immediately. This is still the reason we have lingered here - we just don’t want to be so far away from this medical system. It’s the biggest hindrance to us leaving.
When we got here the Doctor did radically revise Cindy’s medicine. We had called and nearly begged them for help during the week and had only gotten minor changes in the medicine. By coming here they dramatically shifted her meds. It seems that our coming here changed their response to us (maybe took us more seriously?). The change in medicine has been effective in keeping us out of the ER and from losing our minds in the pain.
We have had very little to do but rest, and rest is good medicine.
We went to the store and bought a puzzle and worked it in the lobby of the hotel last night.
We went to Andy’s Frozen Custard
We played PokemonGo on Community Day
We watched the Super Bowl Commercials and Game
Cindy walked for exercise in the hotel and Target
Cindy got back some of her appetite - We ate at Canes, HEB BBQ, Pie Five, Spring Creek
