The Battle With Autoimmune Disease

The Battle With Autoimmune Disease

It was just two years ago, when I decided that I was done having an autoimmune disease. Without digging too deep into history, I had been sick for a long time. A really long time. When I met my husband (at age 21), I had a decade of doctors visits and hospital stays under my belt; I was taking a powerful drug to keep my seizures under control; and I readily shared about my dis-ease. I shared because in order to do life with me, you would have to also do life with it.

Fast forward through learning that I had lumps in both breasts in 2008 and then living through one of the worst autoimmune crash/flares of my adult life in 2011 and, we were absolutely doing life with it. Life was a delicate dance of “living” to the max and then going days and days with an exhaustion so deep that I thought that I might die. Literally. Mentally, emotionally, physically, and spiritually, it is taxing to feel like a burden. I know this firsthand. And because I didn’t want others to know how much of life felt like a challenge to me, there was a constant chatter in my head of “I can go without this much sleep until…” and “I can have this much sugar today, but…” and “I can go out for at least…” Perhaps, dot dot dot.

By 2015, I had spent more time crawling through motherhood than experiencing it. So, I claimed change. I claimed laying it all at the Lord’s feet thanks to Matthew 11:28-30 “Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” I couldn’t quite imagine this easy yoke or less-burdensome existence that Jesus spoke of, but I was willing to search for it. These are my tips from that adventure:

  1. Ditch the label. When I picked up my bible and found Matthew 11:28-30, I wasn’t picking up the cross too. Jesus died to make us whole. Did you hear that? You Are Whole. You are not your disease. You actually aren’t any of the labels society throws at you – but especially this. You do not have a cross to carry (Jesus carried it already), and your disease does not define you. Unless you allow it to. Which brings me to my next tip…
  2. Pick up a micro-habit. Find something attainable and do it every single day. Your habits do define you. They build you up into the person that God wants you to be! You can only become this best version of you in two ways: 1. by slowing moving in the direction of who you want to become and 2. by beginning with the end in mind. Slow movement is easy to make into consistent movement. Goals make movement almost effortless. Example: Every teacher and holistic doctor that I’ve seen over the last two decades has reminded me that while rest is necessary with the disease that I do battle with, I must still exercise in whatever capacity my body allows – even a 2-5 minute walk each day counts. My goal this year? Exercise daily. My micro habit? 10 push ups a day (…keep the doctors away… is my 2017 motto). And guess what? Most days, I throw in some yoga, a plank, or some sit ups. And when I feel really good? I hit the elliptical machine. An object in motion stays in motion. Period. If you know nothing else about our Lord, know that His goal for you is to be blessed by the body that you’re in. For some of us, it’s recognizing that complete healing is an option (and then choosing micro-habits to move toward that). And for others, it’s seeing the good in what we – in our humanness – often want to label as bad or ugly. Whether you’re on either side of that path (healing or thriving with disease), it’s time to hit up my final tip…
  3. Get into gratitude. One of my favorite references to “praising through hardship” is in the bible. While many of us understand the power of a positive mindset, there is nothing that can mend a broken soul more permanently than belief in something or someone greater than yourself. I want you to know that wherever you’re at, Job most likely had it worse. But because of his faith, he was able to go through the agony of scraping itchy sores all over his body with a clay pot, yet still find goodness His perspective took into account that in his lifetime, he had experienced lots and lots of blessings from the hands of the Lord. And guess what – after his hardship, there were also lots and lots of blessings! Even during Dengue Fever (exacerbated by my autoimmune disease), I could praise through. Did I ask God to take me away? Absolutely! I’m human – and the worst pain of my entire life accompanied the mosquito-borne viral infection. But there were moments that I could see Papa’s great hand on my life (like the fact that during the illness, my husband was already a stay at home dad and could take care of our young kids). Back to Job. Read it. For real! I don’t care if you don’t have a believing bone in your body (okay, actually I do – because I love you, but still), grab The Message version of the bible and read this. If you don’t enjoy reading, watch this sermon. Then praise through with me.

My greatest prayer is that in reading this today, these tips will help you. Some of us heal from disease and others of us walk through it for a lifetime. If you’re on the latter end, know that you aren’t walking it alone. I am with you, and far greater than that God is with you. There are ways to go this path without the yoke and the burden. And all of them go back to a relationship with Him. If you’d like to learn more, contact me. I would be happy to partner with you as you grow in your wellness and faith, because truly, they go hand-in-hand.

So Many Blessings,

xox Mama J.

The 27 Day Crash

For those of you who are new to my blog, my take is that everything in life is a conversation. Some of those conversations we’ll have face to face, and some will be played out through pen and paper and clicking keys – because it’s just too hard to have this talk any other way.

Dear Mama,

You may be well or unwell or stable or… wait, are any of us really stable? Anyway, we need to be real with each other. I’ll start: There were 9 glorious months of well. And then an epic crash. Epic. As in, I put on my war gear and went into battle for 27 days. You can learn a lot in that amount of time. And by day 25, I was ready to visit my therapist… I needed to talk it out. Fortunate or unfortunate, I forgot that I needed to talk it out and life looked bleak on day 26 and 27. But there would be light (dear friend, there is always light).

After the 27 day crash of 2016 – I’ve found myself back where I started. On my knees. Chronic fatigue is real. And I spend hours of each month (because I usually have 1-2 challenging days each month), researching the why. I feel fortunate to not be Job, yet in these moments I “get” why I feel so compelled to use his story (The Book of Job) for the book I’ve started to write. I might even add some of this to my book. If you are living or have lived in the state of unwell or well, I’m going to remind you that BOTH are impermanent. I heard it ever so clearly as I prayer-walked this morning. Don’t grow roots here. With Chronic Fatigue, with postpartum depression or anxiety, with ANY pain story, you don’t just recover from it. But you aren’t allowed to wade in the mud forever either.

still-i-rise

My sweet mama friend. I encourage you to live your life to the maximum amount of “stable” you can, and then you give yourself grace for being human. You are human. So am I. Praise God for that, my dear. I don’t want that kind of responsibility – and I doubt you do either!

If you haven’t Chronic Fatigued, then I’m going to break this down for you. I wrote this recently on my personal facebook page, where I live out some advocacy on “atypical motherhood” with like hearts…

Most folks assume chronic fatigue means you’re just tired. When reading or responding to a text message from someone you ADORE feels exhausting, there’s something wrong. I’m not just tired. Physiologically, my systems don’t keep up with normal life. Most likely they’re fighting an invisible long gone virus. The worst fights are when a real virus or infection comes along though. It’s all out war. The World Health Organization has considered that CF should be renamed SEID: systemic exertion intolerance disease. Link those words together and you’ll get a glimpse into my world. My systems (all of them) get overused in any way, and I will crash. My body and mind will become uncomfortably slow. Read that again! I’m not slow. I am actually absurdly smart. A geek if you must!! But our conversations probably won’t be remembered or make sense when I’m in a crash. Sometimes I even slur my words. And my emotions? It’s not a good place.

I’ll end here. Sometimes, I’m not in a good place, but STILL God. Is. Good. And so is THIS adventure. It’s one where I get to learn from suffering and pain, and share what I’ve learned. I get to sit with others who have been on the pain path and I still get to experience long time periods of being pain free. I get to move with others who want to work it all out. (So thankful for the gift of movement – especially after 27 days of 5 minutes here and there.)

Ask me anything. You shouldn’t go this alone. We don’t have to go this alone. Bend; breathe; and let your soul be restored.

“But those who suffer he delivers in their suffering; he speaks to them in their affliction.” Job 36:15 NIV

Love,
Mama J.