Chiari

Content Fatigue and Chronic Illness

/ Regina Walker / Leave a comment

I first wrote about content fatigue here. Be sure to catch what I had to say about the over-consumption of media there.

Another area in my life where I got bogged down with content fatigue was in regard to chronic illness. I was trying to read every diet plan, exercise plan, healing plan I could get my hands on. One thing would say “eat this raw” then the next would say to never touch it. One would say cook everything in butter, another would say never butter, always oil.

My heart and mind were being pulled multiple directions as I sought answers and healing for my hurting body. I had to really face that I can only try one plan at a time – and that any plan that will bring healing or lasting pain relief to my body will take time. It won’t happen on the first day, the first week, and maybe not even the first month. So I have to really pick one plan and follow it for at least 90 days if not 180 days. This is hard because I want to fix all of the problems NOW.

I don’t want to be sick anymore. I don’t want to hurt anymore. And the one that jams me up is that, while cellular health is crucial, and I’m starting to wrap my brain around eating and exercising in a way that moves fluids around, toxins out, and oxygen to and from, so that my cells are the healthiest possible – one of my conditions is a malformation of my skull. I don’t think I can eat enough of the right stuff for that to change.

I do think some of my pain is from inflammation. I do believe my asthma can be greatly controlled with diet and exercise. But I don’t think Chiari just goes away because of kale smoothies or triple servings of blueberries.

If you’re facing a chronic illness, and you’ve started researching how to support your body, I think you can relate – a lot of people have answers, and they come with a pretty price tag, and this notion of a quick fix. The content alone can be exhausting, and the conflicting messages make it sound like it’s our fault for being sick.

Don’t let that seep into your heart. If you know you need to do something better, take steps to do so. (This is me all the way.) But blaming yourself won’t make you well. And getting completely overwhelmed in the content you can read/watch/hear about chronic illness can be consuming and depressing.

Take one approach at a time, and give it time. Be aware of detox symptoms, go slow, give your body and cells a chance to adapt. Follow sound medical advice and go to a practitioner you can be honest with, open with, and that you trust. Sometimes you’ll know right away if a way of eating isn’t right for you. I feel terrible on High Fat/Low Carb within the first week. But it takes more than a month to see improvement from some of what works for my body.

Stick with it. Consistency matters. If you are eliminating a problem food, you have to really get it out of your system and leave it out of your system. Not slipping is hard. But don’t let one meal/snack turn into 3 weeks of consuming something that adds to your inflammation and pain.

You can make changes that will make you feel better. I think food plays a tremendous role in health. I think finding an exercise you can tolerate is important too! Stretching, walking, swimming, seated weight lifting, elliptical, dance. Moving your body moves fluids and gasses around so your cells aren’t swimming in toxic soup and they get a replenishment of nutrients. Start with a few minutes if you need to. You aren’t going for a marathon here. Just 3-5 minutes of movement. In a week, add 3 more minutes. You might find in 6-8 weeks that you can tolerate 30 minutes of slow, steady, deliberate movements.

None of this is medical advice – this is just from one chronic illness patient to another.

I think there is a spiritual component to all of this that needs a post of its own, so I’ll work on that in the coming days. I couldn’t face the worst days without the hope of Jesus. Sometimes I’m in so much pain I’d rather die than keep hurting like I do. But spending time in the Word (whether listening via the bible app or reading in my bible) helps me cling to Jesus and remember that this world, and this life, are temporary. He will remove all my pain and wipe my tears.

Until next time,
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September for Chiari Awareness

/ Regina Walker / Leave a comment

A few years ago, I joined a life group and met some really amazing people. People who are still my friends to this day. The leaders of the group have a darling little boy, and he has Chiari Malformation. When it first came up, I told them about my husband’s boss’s wife having Chiari, also. It deeply affected her life. I couldn’t help but to hope and pray that their little boy wouldn’t face the same symptoms that she faced, but the future was and is unknown.

Unfortunately, we’ve lost touch with Jimmy’s former employer and therefore his wife, too. I don’t know how she is doing, but I do think of her often.

In honor of my friend’s little boy and my husband’s boss, I often shared graphics and changed my profile picture in September. I knew Chiari was a huge part of their story – maybe not the biggest part, but a very real and serious part.

What I didn’t know was that on June 13th of this year, I would be sitting in a neurologist’s office, hearing that same diagnosis for myself. Multiple migraine types and Chiari Malformation I. After my MRI and reading the wording and googling it, I had my suspicions. My dear friend did, too. She was a light to me, always reminding me that Jesus is enough even when our health is faltering.

I was nervous, reserved even, what if it wasn’t Chiari, what if it was something else? I searched and searched for different explanations to “cerebellar tonsillar ectopia” but I always landed right back on Chiari.

I know God was working things out for me long before I was googling my MRI findings, and long before that neurologist confirmed the findings. I knew God put specific people in my life to help me walk through life and to keep me focused on Him. I am so thankful for His careful and thoughtful orchestration. Don’t get me wrong, I don’t think God afflicted me with Chiari. But I do know He is already in our future and aware of what is coming, and that He works all things together for the good of those who love and serve Him.

Chiari may be part of my story now, but it is not my whole story. Chiari may give me some really bad, really hard days, but it can’t take away all of the good that God has given me.

I will keep pressing forward, day after day, trusting God to work in me and through me, no matter how healthy or sick my body may be. And in September, I will share about Chiari, not only for me, but for all of the people learning to live with the challenges that come with Chiari.

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(Affliate Link)
Help spread awareness for Chiari Malformation with this coffee cup from Amazon.

Do you have an invisible illness? I’d love to hear more about it in the comments below.

It Changes Things

/ Regina Walker / 3 Comments

We all have moments in life that change things. Things that happen over time, or things that happen in an instant, but they change our perspective, our attitude, or even the entire course of our life.

I had one of those moments this year. After finally discussing with my doctor some of the things I experience that aren’t quite within the range of normal, she sent me for an MRI. I guess when I shared the reading with a friend, and googled some of the terminology, I realized what it said, but the truly defining moment happened with doctor officially said it:

Chiari Malformation I.

I told myself in the days following that appointment that learning I have Chiari changes nothing. I’ve had it my whole life, and our God is mighty and protective and He had carried me through all of the things that I’d done in life.

But the truth is, when she said to watch jarring or bouncing activities, and to be conscious of anything that could cause a brain injury, it really changed a lot of things.

In some ways, it feels like finding out I have Chiari changed everything. Some times it is empowering to be learning what can trigger my headaches (which she classified as migraines, but I still have a hard time calling them that). Some times it is disappointing to know that it’s not in my best interest to ride roller coasters or go sky diving.

I even drive differently. I’ve always been a cautious driver, but even more so now. I don’t want to find out what whiplash means to my brain hernia. I just don’t.

Having a name for it, really being able to tell myself there is a reason for the bad days has helped ease my guilt over those days – so just because naming it changed everything, some of those changes are good changes. Before I knew, I beat myself up when I couldn’t get something done, when the pain was too much, and I had to give in. I pushed through the bad pain days and didn’t give my body the rest it needed, which just resulted in worse days.

I’ve been actively working on giving myself permission to rest when I need it. To listen to the start of the pain, and ease up a little, slow down a little. It’s not easy, I’m a work in progress.

I’m also learning to rely on Jesus more and more. His strength is made perfect in my weakness and this isn’t permanent. This world is not my home and I know whether I see healing on this side of Glory or not, when I enter in to Heaven’s Gate to worship my God and my Savior, there will be no more pain, no more suffering, no more brain hernia.

One of my favorite things about this journey this year is seeing how God was working years ago, leading up to this point. He put some very specific people in my life to speak words of life, healing, and love over me and to me. He sent me friends that would point me ever toward Him, reminding me to praise, helping me see the good, lifting me up, and never letting me feel alone.

It’s a pretty big thing to say I learned my brain is falling out of my head this year, and to also be able to say, “But I haven’t felt alone on this road.”

I remember telling myself as I sat down in the seat of my car after my doctor’s appointment, “I’ll never write about this. It doesn’t get to change my writing. It doesn’t change anything.” Cue writer’s block, because writing is how I process life. So I’m writing about it, and I’ll mention it when it’s relevant I’m sure, but that’s not all I’ll write about. In fact, of all the things Chiari could change for me, it doesn’t take writing away, and that is a great relief to me.

Chiari wasn’t the first thing that ever changed everything for me, and I doubt it will be the last. It’s just the most recent, the thing that I’m learning about in this season of life.

Have you ever had a “changed everything” moment in life? Tell me about it in the comments.