Health Battle

At twenty, I had a new anesthesiologist during my daughter's delivery. There were four epidural insertion attempts, and the pain in my legs immediately was worse than the actual labor. It wasn't until years later when I had my son, I realized that the epidural for my daughter's delivery must have only partially worked. There was a clear difference between the pain I experienced during both labors. Anyway, soon after I had given birth to my daughter, I looked at her father and saw he was exhausted on the little bench. The nurse had told us that as soon as I had given birth, we would move to a different room with a bed for him.

I asked the nurse, "When do we get to move to our room?"

"As soon as you can walk," she smiled.

I remember feeling horrified; I had been through so much pain in the last 18 hours with, predominantly, my legs. The painful tingling sensation I kept mentioning was confusing to the doctor and nurses and was really brushed off. It was weird to me; was this normal? Had they seen this before, I thought? I let out a yelp or a small scream every time they touched my legs. Two hours after delivery, I still could not feel how to move them, and the only sensation I had was definitely from irritated nerves.

Finally, hours later, I had little ability to move. I asked my mom, a tall six-foot-two woman, if she could help me get my daughter's dad to our new room. I walked down the hall with one arm on my mom's shoulder and one on my daughter's father's shoulder; they did all the walking for me. I eventually gained the strength to walk again, but I had a slight weakness.

A few months passed, and I had sporadic issues with weakness in my legs. I went to see my childhood family doctor, and she said, "Chels, let's check you for MS, just in case."

As soon as my legs felt a little better, I brushed it off and decided not to follow up on getting checked. This intermittent pain and weakness would come and go, but it would eventually improve. Fatigue was a new enemy in my life; however, like any good enemy, it was sneaky and disguised. As a young person, I just thought I was "tired." I didn't understand fatigue was a symptom, as I was so young, but this enemy was robbing my energy. I remember feeling extremely angry at myself, shaming and thinking I'm lazy.

Let me tangent for a moment; fatigue is the worst symptom of my illness. My brain and heart are not tired. I want to be free to go. My body slows me down and steals from me my independence. To anyone struggling with this symptom, I pray you get to where I did, which was hard to swallow at first, but it is accurate and good. Ready for it?

God gives you your limitations.

Here is the watered-down version of where I am at today.

At twenty-five, everything changed. My body shut down, and I knew something was wrong. It just took me out, and I didn't leave my bed for three days, and then shortly after that, I struggled with leg paralysis for an entire week. This time it was time to see the doctor.

Years and years of testing and new symptoms have happened. Things got terrible, but after the birth of my son, I haven't had one single day in almost four years without experiencing constant pain.

Here is a typical day:

The moment I open my eyes before I am even fully awake, the first sound I hear is my own partially conscious light gasp. My entire body feels like I was hit by a large bus. I feel pain in my muscles, my joints, and my nerves. I'll lay without moving for some time before I muster up the mental strength to choose to feel more pain by simply moving. First, I'll sit up and get my legs to move over the bed, and again ill sit there for a moment, this time mentally preparing to stand. The worst pain is in my feet because the only sensation I have in them is my nerves; they feel dead. I'll put my feet on the floor and stand, and for the first two hours of the morning, I will walk around like Ariel from "The Little Mermaid" after she has received legs for the first time. I'll walk to the couch first, read my bible or pray with a cup of coffee. But then I feel a nagging to unload the dishwasher. You see, fatigue hasn't set in, only pain, and morning is my go time. It's the times I can be physically most efficient by having my energy.

I drop and break dishes constantly because my hands give out. That can be irritating because, as a foodie, I've made sure my plates are stinkin' cute. After a few hours in the morning of moving, the stiffness starts to go away, and my balance gets quite a bit better. By afternoon, I'm pushing through and trying to teach my fatigue whose boss, although some days, scratch that, many, it wins. When I cave and rest, a difficult task with a toddler full of energy, it usually rewards me with a second wind. I get used to the pain throughout the day, and I'm cautious not to complain to my family, although sometimes, by the evening, without realizing it, I'm feeling slightly grumpy by dealing with it all day. By the evening, I'm just done, it's like I have a smaller tank than everyone else, and I've already spent all I was allotted for the day. I still have off and on leg paralysis during a flare up. There's some days I supplement with my wheel chair and nights my husband has carried me to the dinner table. When it's time for bed, I try to fall asleep, but the pain makes it hard, as I usually experience muscle spasms all over my body. When I finally sleep, I don't think I sleep very well because my husband says I cry all night. Then I wake up and do it all over again. Some days, however, aren't like this, I have some good days, but even my good days have an underlying level of pain; it's just so much easier to ignore when it's less. Those days I feel less like Ariel and more like Cinderella, having until Midnight to have a ball with the day. I usually even spend it like her, catching up on chores my body fights me to do during the more challenging days.

Let me tell you, the Doctors don't have a fancy explanation. I have secondary Raynaud's disease. My file says neuro-muscular condition (interestingly, diagnosed on the date my daughter was born), although no one has given me answers when I ask. I had one positive ANA test, which was negative the next time I was tested. I had CRP levels through the roof at one point (I'm not sure what that means; I assumed inflammation), but it was normal again the next time I tested. There's a small puncture in my L12 Lumbar, but the Dr doesn't think it's large enough to affect anything. I have an appointment to see the Dr again next month, but in the past, I have felt very tired of not having an answer, so it had not been very discouraging to go. I do, though, because I have a family and feel it's responsible to seek for them. However, I no longer care if I get an answer or fix my pain. I trust.

Here is where I have arrived, though. God has allowed this in my life:

My strength is perfect in weakness: 2 Corinthians 12:9–10. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.

Not independent, but dependent. God has allowed my limitations. When I sat back with them, I thought this: what an honor it is that He trusts me to deal with this. I still boast in His name. I have zero anger toward Him, even on the most challenging days. Should He give me answers or not, heal me or not, I choose Him and trust Him to use this struggle for His glory and pray it helps even one person find His strength. Even if it were cancer and I didn't know it, I am grateful for the perspective on "tomorrow is not promised" this health struggle has given me. It has caused deep thoughts about what I would want to leave my children should anything happen. Actually, my grandparents were orphans since they were two and never knew their parents. Not a memory or a single-family recipe passed. I get emotional thinking about how I wish I could be there when they meet their parents in heaven. Between these two thoughts of my health and my grandparents, God has used them to cause me to have more intentionality in preparation for when my kids will do life without me. Whether that be sooner or later. What I wanted to leave for my kids became a project. I want to leave them memories, joy, and wisdom.

Memories: Through this experience, I have purchased monthly memory books for each of my children to have their childhood memories. We love getting them in the mail each month.

www.chatbooks.com

Joy: Passing Joy for me came in the form of Christmas. Christmas brings me joy. Besides being the day, I am most grateful for because of how God sent his son to save the world, it is the day we are the most present as a family. Not worried about the past or the future, undistracted from life's busyness and temptations. It's wonderful. Our Christmas traditions include decorating for "Jesus' Birthday party," baking Him a cake, and singing him "Happy Birthday." I also teach the kids that they get gifts on Jesus' birthday to represent how Jesus shared His gift of eternal life with us. Hows it is a birthday for Jesus, yet they get gifts because of who He is and how He shares. So when trying to think how I would leave them joy, I started collecting Christmas decorations to bring joy to their future homes and families. I ask for Christmas decor on my birthday, even though it's July, lol.

Lastly, Wisdom: This is everything God has ever taught me. This was a tall task as there have been a lot. I realized I needed to write a book. Which was crazy because I had never really written. At first, I was overwhelmed, but a day came when I felt convicted to start. I wrote a book about all idols I chased or false ideas of things I thought would make me happy before finding Christ. Wouldn't it be like God to help you discover a new passion? Apparently, I really enjoy writing.

I finished writing the book of my personal God-given wisdom. I completed my project on memories, joy, and wisdom. Even if I hadn't, I knew God would care for them better than I and give them everything they need. Still, I was grateful.

Upon completing my book, I had a spontaneous thought I thought of writing a blog. I didn't know what I would write, and as soon as I started, it became my blog diary. God is moving the waves that guide my boat. I am grateful he put it on my heart to do this. My limitations have provided the time to reflect, pray and write. The time, I would have undoubtedly chosen to use to be too busy and distracted to have written in the first place.

Thank you for reading.

https://youtu.be/CoZ_Qe1nQWY