One thing I have learned over these last 7 years of suffering with chronic illness is that everyones "hard" is different. In this post I'm not trying to say my "hard" thing is any harder than anyone else. We all are facing "hard" things. This is just my family's hard things at this time.
Let me explain what CRPS is and when it started for Abree.
CRPS = Complex Regional Pain Syndrome
It's exactly what it's name says, COMPLEX! This has been a new, eye opening experience for our family. I thought I understood chronic pain, but watching a daughter go through it changes my whole perspective of chronic pain. It's worse than I could have ever imagine and yet, I have an amazing angel daughter who deals with it and smiles! Most people would never know the type of pain she is in. The intense fire that burns throughout her body and hurts to even wear clothes. Yet she is a 15 yr old who wants to live life and has done amazing for the last year moving forward with the disease.
The disease is a disease of the nervous system. The nervous system begins to over fire to certain areas of the body and causes intense throbbing and burning pain. It can also cause discoloration and swelling in those areas and overgrowth of hair.
Abree first began to notice the pain last January after being diagnosed with a bone bruise in the foot. After the 8-10 weeks she was told she could go back to gym workout, but she kept telling me the pain was worse than when she was first diagnosed. I blew her off and took it as fear with gymnastics (this can happen a lot with gymnast and injuries). Thanks to an amazing God, who didn't blow Abree off, I woke up one morning with an urgent and extreme sick feeling that something was really wrong with Abree. For 2 weeks I told myself she was fine and I was over reacting, but her pain was only getting worse and the feeling wouldn't leave. To ease my mind I paid out of pocket and went and got another MRI. From that MRI we saw a foot specialist in Utah who diagnosed her with CRPS. Little did we know what the next year would bring for us.
Within a month of being diagnosed she began spinal injections the "restart" the nervous system. Over the next 5 months she had 8 spinal injections with little relief of the pain. During that time she also quit gymnastics to try and heal because the pain had become too strong. The light in my daughters eyes had left and though she was doing the best she could each day, she wasn't happy and she had no hope of getting better.
In August of 2022 she went in for surgery on her wrist (she had torn the right TFCC ligament). No one had prepared us for the fact that CRPS can spread, especially from invasive surgery. Within weeks of her surgery she was complaining about elbow pain and numbness. I told her it was just from the swelling and give it time it would go away. But 6 weeks when we started PT, her therapist notice a funny patch of hair on her wrist and let me know that it was very possible her CRPS had spread to her arm. Sure enough, but week 12 after the surgery the pain was now all over her body and she had to stop wearing shoes and socks. She began sleeping on top of her bedding because being under the sheets was too much. And then when we went on our family trip to Disney World, we ended up putting her in a wheelchair everyday because the walking and standing was too painful. During this time she also struggled to sleep, concentrate on school and work became a burden (she would be in pain just thinking about having to coach).
But luckily we found a place that gave her and us hope for healing and a more normal life. We found - The Spero Clinic . In November of 2022 we booked her for treatments starting February 2023. Her light immediately came back.
The problem for Zac and I was that the clinic is in Fayetteville, Arkansas and treatment is for a minimum of 12 weeks.
We had no clue how we were going to make this work. Zac and I both work full time. We needed to find a place to stay. And most importantly, I have 4 other children that need their mom and dad.
After much prayer and fasting we felt assurances that this was where Abree needed to be and everything would work out.
Zac and I began planning our weeks that we would be out with Abree while the other person is home with the other kids. We booked a trip out in early January to find a place to live. With a true miracle, we found a perfect place for us that feels just like a home within our price range. And then our last miracle, Zac received a raise within weeks of us leaving. It was just enough to cover our extra food expense. Everything was lining up and everything felt right! Now was just the actual therapy and the challenge of Zac and I being separated for the next 3 months.
Last Friday, February 18th Zac, Abree and I loaded the car up and took off on our 3 day car ride to Fayetteville. We had to spread it out for Abree and I to survive the pain.
To say we had miracles on our drive is an understatement. When God wants you someone, miracles really happen. We had amazing weather for all 3 days and for the part of the I-80 through Wyoming that did have snow, we had a tender mercy of being able to stay in control of the car. And most importantly, Abree's pain didn't flare.
Abree officially started at the clinic on Wednesday, February 23rd. The day was filled with learning and testing. Her pained flared from the poking and prodding that day. So the night was a little rough. Thursday she began therapy. Pain stayed about the same that it always is, but she was more exhausted this weekend than normal. We had to come home take a nap on Thursday and then Friday she just wanted to lay down for the afternoon and same on Saturday. Today she seems to be as normal as she can be with the disease. But today the homesickness kicked in for both of us. The house was too quite, the table too big, and there was only two of us at church.
It was definitely harder on me this week than I expected! Listening to everyone's stories, finding the intensity of the therapies was more than my momma heart could take. I spiraled downhill within the first 2 hours of being there. I wanted to take away her pain and my body started taking it all on. I had a migraine and the pain was making me want to shake. I was beyond antsy and began having a panic attack by lunch. At dinner, I finally broke down and cried and everything seemed to be better after that except for the fact that I was embarrassed that I was the one struggling and Abree was smiling and laughing with Zac through it all.
By Thursday a friend called and forced me to talk, which ended up being the best blessing I could have had. As we talked, I cried more. I want to support Abree to the fullest and yet I felt as though I was failing already because I couldn't keep it together for her. I wasn't trusting that she can bear this pain and work through the therapy. I was trying to save her, when the only person who can save is Jesus.
Last year I felt strongly to allow her to go through this trial to come to know Christ and yet, I want to so badly not to make her have to suffer. I want her to get better without having to go through the hard. One of the best lessons I've learned through my chronic pain is that having the "hard" times is how I've come to find Christ more in my journey. He will always be in the journey with us!
I know Abree can do this! I know she will find healing through Jesus Christ! I know as she invites him in daily to her therapy sessions she will receive the fullest treatment she can and she will become the person she needs to be!
Life is an amazing journey! I'm so thankful for the daily lessons God give me and my family through the "hard" things.
I know we got this!
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