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.

Premature Labor & Bliss: How A Healthy Baby Changed My Life

Premature Labor & Bliss: How A Healthy Baby Changed My Life

To my precious Wild,

I love you. Happy fourth anniversary of our first big hurdle together. I know we’ll have many, many more challenges because of the way your precious body works. I also know we’ll have many, many more wins because of the unshakeable faith that I have in our Heavenly Father.

To my friends,

Today I want to share a snippit of our adventure with Bliss. And how it was absolutely wild from the get go!

Four years ago today I was 32 weeks and 1 day pregnant with my second miracle baby. On March 13, 2013 I found myself sitting in a room full of health care providers and experts in maternal well-being. The theme of our time together? Preventing and supporting maternal mental health for those experiencing premature birth (and birth loss). I left that conference with a strange tightness in my chest. It was the same tightness that I felt while carrying my son… but I can only recognize that years later. In that moment, I just didn’t feel “right.”

I returned to my office, and sat down at my desk. After a few minutes, I asked a colleague if she would bring me to the hospital. Was it a heart attack?

I don’t remember much about the 24-48 hours that followed (I think that’s a protective boundary my sweet mind has gifted me), but I do remember two things: 1. the moment that my blood pressure crashed due to a medication meant to stop my contractions (No heart attack here! Just preterm labor. Again.), and 2. when I heard the words BED REST.

Millions and millions of women have no idea what it’s like to be on bedrest twice. But thousands of us do. Is it worth it for a healthy baby? YES. Is it pure torture while you’re on that particular path? Oh, friend. You can’t even imagine.

There I was, a mother with severe perinatal anxiety being put on modified bedrest (at home, Praise Jesus!) for 22 hours a day, every day. A mother still recovering from postpartum depression who now had limited contact with her two-year old son – let alone any other human being for weeks and weeks on end. (The second half was a product of living in the sticks back then.)

I will never, ever complain about those five long, medicated, darkest of dark weeks where I wept every day and pretended to be fine. Those weeks gave me a beautiful child of full health born on (wait for it…) her DUE DATE. We both proved our fight. (Thank you Bliss for teaching me how to be bold and brave then, just as you do now.)

My friend, the story doesn’t end with a healthy baby. It begins there. I’m reflecting on that right now because so very many women don’t experience this gift. Nothing can prepare you for all the feelings you learn about as you hold your first healthy baby. Nothing can prepare you for the joy you’ll experience. And nothing can prepare you for the longing and sadness that might rise up, too. When I gave birth to this baby, I realized how very disconnected I had been from my first…

Regrets? I have none. But I do have so much empathy for the woman I was. The woman who didn’t know what motherhood could be – who had no idea that she could fall madly in love with a child at first sight. Oh, how I fell in love with my Bliss at first sight!

In our short time together, Bliss has taught me gratitude. She has taught me big, scary love. She has taught me patience and kindness and loving-awareness and simplicity and balance. Bliss has taught me connection and reconnection and bravery and that it’s okay to not text back right away (life doesn’t stop) and that you can actually give birth to one of your very best friends… And we’ve only been together 4 years.

It feels simultaneously absurd and authentic to write this… but I can’t wait for the next four and the next four and the next forty. A mother’s job isn’t to raise her young and walk away – but to counsel the next generation in her wisdom as she grows old. This season is just the beginning of something beautiful. Today, I get to walk alongside moms who have experienced chunks of life that have look like my chunks. But there will come a tomorrow when I will get to walk alongside my Bliss, teach her what she has unknowingly taught me.

xox

Mama J.

 

She opens her mouth in wisdom, and the teaching of kindness is on her tongue. She looks well to the ways of her household, and does not eat the bread of idleness. Her children rise up and bless her; Her husband also, and he praises her, saying: “Many daughters have done nobly, But you excel them all.” Charm is deceitful and beauty is vain, But a woman who fears the LORD, she shall be praised. Give her the product of her hands, And let her works praise her in the gates.” -Proverbs 31:26-31

Acceptance In Motherhood

Dear Mama,

9 hours. Did you know that it takes 9 (interrupted) hours to take a 2 hour defensive driving course online at home on a Sunday afternoon? If this isn’t motherhood in a nutshell, then nothing is! Pretty much everything that we do – once we enter the realm of nurturing other little beings – takes at least double the time to complete. Are you okay with that?

Yesterday, I was not. I was not okay with the distractions and the interruptions and the crying and the screaming and the tattling and the nose-picking arguments. (You know the one. It starts with “please, sweetie get your fingers out of your nose,” and ends up with you raving over the 15 different reasons why you should not stick your fingers in your nose… to a three year old, who at the end of the conversation is still picking their nose. #JesusFixIt) Yes, yesterday acceptance was long gone and I was being hung out to dry by two precious miracles who sucked all of the love words right out of my soul and replaced them with responses like, “really?” and “I can’t even.” Please note, hands were being thrown in the air during both responses. Signs that you really have a frustrated mama bear.

But guess what? I have no guilt. I have no guilt that acceptance wasn’t even slightly on my radar. I have no guilt that I’m human. And that I’m okay with. Are you okay with your humanness?? Are you okay that sometimes your mission field is full of explosive mines and that sometimes, you’ll get struck – you’ll go down, down, down – and then you’ll reappear as Mommy Mary Poppins the next morning? Are you okay with that?

bliss
She’s okay with it. She is more than okay with my humanness. Because interestingly enough, she already recognizes HER humanness.

 

Mama, I want to know if you’re okay with that because our mission field might always be filled with tiny explosive devices – some that might be concealed for weeks or months or years – and then boom. You trip one, and you are no longer the magical mama bear you’ve worked overtime to become. You’re just a bear with limited maternal instinct, but your survival instinct is still on fleek, so you roar and you run… And then Monday morning comes and you gush over how blessed you are and it brings you so much joy to see your kids excited for school – and that bow, did you see that bow my wild is wearing today?

We’re an interesting bunch, aren’t we?

This morning, I imagine that Big Papa is rolling over our interestingness. I believe He finds enormous humor in our innocence – and not in a roll-your-eyes-at-that-mom-over-there kind of humor. A genuine, childlike Joe Biden meme kind of humor. Have you seen those meme’s yet? Mama, just x right out of this post right now and google it. Okay, okay, we’re mid-conversation – so check it out later at the very least!

He finds humor in how one moment we’re on cloud nine posting on every social media platform that our miracle child has a wonderful new skill (like peeing on the potty) and the next minute, we’re barricaded in the bathroom with a glass of wine and some chocolate, while Frozen is playing on repeat in the living room. We somehow believe that our “Frozen moment” is a sign of our weakness and our failure – meanwhile, we’ve got a savior that died for our sins so that our failures would be absolutely unrecognizable to our Heavenly Father!

Y’all, Jesus fixed it! Can we be okay now? Can we be okay that while striving for being more, we have a good, good Father that loves us the same even when we’re not? Can we accept that no matter how wobbly we personally feel, that we are always on solid ground with the One who loves us enough to have given us these challenging miracles? I hope so. I hope and pray that we can be okay with what is while working for what can be. Because I promise you, you are worthy of okay. Actually, you’re worthy of a whole lot more than okay.

“Let the words of my mouth and the meditation of my heart be acceptable in Your sight, O LORD, my rock and my Redeemer.” – Psalm 19:14

Let’s rock more than okay. Catch you soon, sweet friend.

xox

Mama J.

Why I Went Back to Facebook

Dear Mama,

For almost a week, I walked away from Facebook. If I’m completely honest, that was in part due to the upcoming election and the negativity that I found vomited all over my newsfeed day after day after day. {Still, I’m human.} Gone were the sweet pictures of new babies and old friends and crock pot recipes and family vacations. And I felt my excitement for the social media platform in general dwindle. Over the last three years, Facebook has been my space. It’s where I have connected with my yoga students off of the yoga mat – and it’s where I have stayed in touch with our team around the world! I was shouting it’s praises for building community. I loved Facebook.

And then I didn’t anymore. Yet, I still went back.

I went back after I spent some time in prayer over my hiatus. Five minutes here and there. An entire boat ride with the grandparents. A walk through Walmart, during which I’m sure I got looks as my mouth moved in silence. {That’s just how I pray, y’all.} Prayer about our family, our business, our sensory wild child and miracle mild one. Prayer over church and community and government. Praise over God’s goodness in every gap he’s filled. I still didn’t have the answer to whether I should be on Facebook, though. Then I wrecked my car, Wild in the back seat, and reality hit as I journaled. That reality is simple: we can’t run away from what isn’t working, if we’ve been called to fix it.

burn
It was risky business posting this. I’m not in love with how I look – but giving testimony where it’s due means showing messy, not perfect.

This thought or prompting, brought me to the moment many, many years ago when I gave up. I sat on my knees in a damp, stinky basement – and I prayed to be released from life. I was in a rough relationship, my best friend had just announced her affair, and I had decided to confront someone close to me about long time abuse. All of that isn’t what is important from this memory, though. What’s important is what I heard, which is this: “You are here to make other people happy.” Boom. Calling named. Now, back to why I can’t leave Facebook…

I can’t leave Facebook because I wasn’t called to watch change happen. I was and am called to make change happen. To be the change, as Mr. Gandhi said. And as I gave thanks in my journal for walking away from a pretty good {not good} accident, I realized that no one knew I had walked away with minor, minor injuries – and that my baby girl had none. Not a single one. If no one knows your testimony, it’s kind of like it never happened. It happened. And to give glory where glory is due – to over 2,000 Facebook family, friends, and business partners – isn’t optional. It is necessary.

here-%2f-used

At least it is for me. So, going forward – I’m back on Facebook. Will I take breaks here and there? Absolutely! It’s good for the soul. But I won’t leave until it is no longer a space where more love and light and laughter is needed. Project Change All The Lives has only just begun, because love can break through.

When love broke thru

You found me in the darkness

Wanderin’ thru the desert

I was a hopeless fool

Now I’m hopelessly devoted

My chains are broken

And it all began with You

When love broke thru

And it all began with You

When love broke thru

– When Love Broke Through, Toby Mac

Until we meet again – may love break through.

xox

Mama J.

Turnip Pasta

Dear Mild,

I’m supposed to be working on a new project to be released next month, but felt compelled to rock life The Mild Way – without limitations or time constraints, and with ease. I can’t say that you’re always an easeful child, but your perspective… oh sweet boy, your perspective is often easy and, come to think of it, light.

Praise God that you are resilient, because we both know that living with a sensory spectrum wild child little sister can be a hard experience to praise through. Though baby boy, we prayed through for sure!

turnip
Like turnips, praising through is an acquired taste. Fortunately, we have many, many teachable moments where turnips and praising through can be experimented with – and better yet – experienced. Especially, when you live on the wild side.

My son, I’m pausing today for an ah-ha moment. One I want to share with you, after seeing you praise through it all – the work and the play. The therapy sessions with your wild sister. The incredible gift of raising baby bunnies. So, here’s what I found myself stopping for:

Sweetness, in watching you, I have found is that there is a difference between praising through and praying through. Praising through means you’re eating up those Turnip Spirals and giving thanks for them and their provision and their provider and their nourishment – even if you don’t particularly enjoy the taste or texture. While praying through might mean that you’re asking Big Papa to take the wheel, possibly to avoid an experience or perhaps even to heal it (even if that isn’t in His will).

Praying through is good. Our prayers are important and God surely takes notice, whether or not it’s in His plans to change the course. But our prayers can sometimes miss out on an incredible experience: praising through the storm. I call it the truest healing space. To praise through pain is a battle I didn’t even put on the map recently.

But I am now.

Anyhow, since starting Kindergarten, you are filled to the brim with sheer enthusiasm over pretty much everything again – from coloring for hours to classic television shows (cue I Love Lucy as the highlight for an entire Sunday morning) to playing sports. Your world is how I want mine to be: passionate and sure. Even at the end of a wild day, you find things to give thanks for. Your trust is awe-inspiring.

YOU are awe inspiring. Example: Just the other day, we noticed that our bunny was falling asleep as you pet him. Your response, “Oh, I get it! He must have sensory processing disorder!” It’s funny that I didn’t even think of the impact her therapies have on how you look at the world! This path is making you someone it otherwise would not, sweetheart. And I love the person you’re turning out to be. A place for praise in the storm.

Now, let’s chat those Turnip Spiral’s you loved so much!

All My Love,

Mama J.

Turnip Spirals (Pasta)

  • 2 organic turnips, peeled
  • choice of organic cooking fat
  • garlic
  • basil
  • sea salt

Mama Friends, If you don’t have one, buy a spiralizer (here’s mine on Amazon)! Grab those turnips and turn them into medium or thin noodles in under 5 minutes. While grinding away, add 2-3 tablespoons of your choice fat. I love using duck fat for these! I highly recommend finding a local source so that you can always have some on hand. If you’re an autoimmune-paleo-approach mom, fats are a huge key to your success – and a staple in your house. Veggie mama’s can use coconut oil and produce the same results!

Add spices about halfway through. If you’re using fresh garlic you can saute it in the pan before adding the noodles. Saute your noodles in the pan until they become mostly transparent and slightly browned. (You’ll see what I mean.) Remove from heat, and eat!

I hope you enjoy!

 

I’m Not Doing the Dishes and Mama, Neither Should You

Dear Husband,

I keep imagining that one day, I will wake up and be like you. Stable. You can have a “full” day and not have a physical-emotional-intellectual set back that rocks you to the core of your soul. You can look at a pile of dishes and not worry that if you spend extra time cleaning them today, you might not have the energy to exercise later. And really, it’s the exercise that makes you (me) come back to life. The dishes… well, they’re dishes. And perhaps, just maybe, if they had a pattern it might stir my soul a little more than it does today. But as of 0900 on the first day of fall 2016, dishes do not stir my soul. But, hitting the mat does.

you-are-good-enough
I am thankful for a good, good Father who shows us through his actions that we are all good enough. Even though sometimes my good enough doesn’t feel good enough.

So, I want to apologize in advance – to my rock, and my more stable half – that the dishes can peace out. Just like the laundry did. I’ll get to it when I can get to it. But my mat, honey… I promise you, I will make room for that. Because then I’m a better version of me for you and for our mild and wild babies. I am worthy of self care. I am so worthy of it.

If there’s another mama out there reading this – so are you.

{insert picture of me rolling out my mat with a big, huge, happy smile}

Peace & Love,

Your Wifey

 

Labels

Dear Wild,

This morning I woke up and I read this amazing article. I knew that I needed to dive into our story, again. I instantly felt that others might need to know why I share our story (even if I know why I share our story). Too many people might feel that this is unnecessary, and it might be uncomfortable for them to read these posts – often with raw emotions and vulnerable hearts. Others might even feel like this is invasive. We’re opening the door into our private lives to share some of the experiences that we’ve had with you, my sweet miracle child. But to not share these, would be detrimental to our growth as people and as a family, and it would perhaps halt the impact we might make on other people going through something similar.

What I want other people to know, from the moment that they dig into our conversations here, is that you DO have a label! And I’m okay with that. But, what I didn’t realize until last night, was that you don’t know you have a label. It made me really quite sad to see your confused little face as I explained an outburst to your big brother. I knew in that moment, you weren’t prepared to listen, but one day very soon you will be. Listen, my sweet girl. Mama is about to tell you all about your label. The label that describes your quirks and disposition. The quirks and disposition that make you, you.

Let’s pause here. Some people might think that’s a great thing! That you, my wild child, have no idea that you have sensory processing disorder, or that you are most likely on the spectrum. But to me that means you don’t know who you are. And sweetheart, I will give everything I’ve got for you to know and accept the kind of different that you are. You are wild; you are funny; you are fantastically smart; you have the most interesting perspective on the world. You amaze me every single day… even as I dress you because you can’t quite do that without prompting; even as I feed you when we are on a timeline, because I know otherwise you’ll get distracted; even as I remind you to use the toilet, because I know that again there might be too many other sensations going on for you to process, and you won’t recognize the sense of urgency. You are amazing, even though I jokingly refer to you as my tiny Alzheimer’s patient. (Because let’s be honest, even though you’re amazing, you take work.)

bliss
One of those moments where I would do anything to see your beautiful face, but your comfort is in hiding behind a pirate hat – in your own sweet little world.

But it’s harder for you. And that is why I shout out your label(s) to the masses! It’s so much harder for you – and you should know that. Not because it’s a place for you to grow weary and complacent and weak, but because you need to know that you are a force to be reckoned with. Every day you face unseen battles that typical kids don’t face. I watch someone like Dr. Temple Grandin and her accomplishments, and I think YES. The obstacles you are navigating will allow for you to make a far greater impact on the world than I can.

Labeling allows for you to know – and one day soon process – how very strong you are, my sassy girl. And labeling allows others to “see” you. So often the world runs about without focus. When we share your label, we give them somewhere to set their sights on. Expectations change, and understanding begins.

So, I’ll end my ramblings here. I want you to know that you are different, because different equals powerful. I want others to know you are different, because all types of different have a place in our world. If we were all the same, no one would step outside of normal. Spectacular change comes from life outside of normal; and the greatest contributions that we can make come from being different! And you my sweet baby girl you are so different.

Have you heard yet, baby girl? You. Are. Different. And praise God for that.

“We have different gifts, according to the grace given to each of us. If your gift is prophesying, then prophesy in accordance with your faith; if it is serving, then serve; if it is teaching, then teach; if it is to encourage, then give encouragement; if it is giving, then give generously; if it is to lead, do it diligently; if it is to show mercy, do it cheerfully.”

– Romans 12:6-8 NIV

Love,
Mama J.

Beyond the Pain Story

Beyond the Pain Story

Dear Mama,

I am not the controversial type, but please hear me out. Too many mommy blogs and facebook page and twitter account owners out there chatter on and on about their pain, not realizing that 1) what you focus on is what you become, and 2) anything that you share from a space other than love fails to spread love. In my heart, I feel like these posts and articles and tweets and rants aren’t helpful. Not only are vulnerable and possibly broken beautiful souls not claiming greater wellness from reading the content, but additionally they are being dragged into the depths of a sorrow that they aren’t prepared to handle. Is it possible to have PTSD from carrying another’s hurt? I’m no psychologist, but it just might be. Follow pain story “content providers” for long enough, and get captured in the pain story.

I was captured in the pain story. Whether the pain is body, mind, or spirit – the journey feels so very isolating, and talking about it feels inclusive. You’re suddenly a part of something. Does it feel like a village? A tribe of support?? In some ways, it might be. Maybe. But maybe not.

I remember the first time that I typed #spoonie into my instagram search bar, hoping to find others like me who wanted more. Like, really, really, really wanted more. (Because we all know or have been the person that says that they want more but the actions prove otherwise.) My hashtag search results produced thousands of horrific pictures, with commentary below them that truly boggled my mind. Here and there, I would find a woman who had not claimed the pain story and had instead chosen to rewrite it. But there were far too few. And it crushed my soul to read those posts, or scroll through those galleries. So, I stopped.

Then I tried to volunteer for a few different organizations dedicated to a change-movement in women’s wellness. And it was like… ARGH! (Picture woman mentally running in the other direction.) Not only was it like diving into insta-spoonie-land all over again, but so much of their pain stories resonated with me. I have a history of abuse, addiction, poverty, an eating disorder, complicated pregnancy, autoimmune disharmony, and postpartum mood disorders. I’ve been a mess! And every time another pain story popped into my feed, I felt myself reliving history instead of searching for His story in it all. His story is so much more important than mine, than ours.

Chances are, you have experienced a pain or two and that’s why you follow my posts. But let me own something right here and now: I am not going to allow, nor will I ever allow, you to wear my pain. I am sharing from a space of having been healed and of daily re-healing. I stopped looking outside for support, and crept inside – into my relationship with myself and into the most important relationship of all: the relationship that I had (and have grown) with Jesus.

If you’re not a Christian, I hope that you won’t stop reading here.

raw
I am the girl in pink. I was released from 10 weeks of intensive physical therapy just two weeks before this hi-flying adventure in Cozumel last December.

And this is why… My soul felt weak. I was easily entrapped in pain. Living with a special child as an autoimmune mom… I had tapped out any resources left of my own. I needed fuel and nurture and security and most of all peace. After losing it (“it” being my mind), for what is hopefully the last time on my poor unsuspecting husband, I was one hundred percent sure I could absolutely not do mothering alone spiritually. Don’t do your mothering alone, please. The next best things to Jesus, are a good therapist (I’ve had three), chocolate (try raw and organic because you’ll feel less guilt – because really, do you need more?), and finding a community of vulnerable mom’s that refuse to be pain. Please.

The last few days, I’ve been putting together the blueprint for such a community. And if you pray, y’all – will you do me a favor and lift up the intention and the cause? Raw motherhood doesn’t mean we must always weep together. It means that sometimes we rise to the occasion in the discomfort and practice living through the discomfort, until it either becomes comfortable or joyful – or best yet, an experience to grow others from.

Claim what you want.

Rise.

Own where you are.

Rise.

Empower others to do the same.

Rise.

Please?

All My Love,
Mama J.

Diagnosis Not Unknown

Diagnosis Not Unknown

If you are here, you either know me or you know my mission – my mission being an advocate for women’s health and self-care practices.

Because of my activist-heart, I work daily to be transparent. Sometimes, my husband has to pull me from the depths of my habitual “overdoing” to do so – as I have the pattern of breaking before I remember to bend. I share the story that never ends. It is a story of being a woman and a mother who has fought for her health almost twenty years with more “possible diagnoses” than even I can count.

As I child, I had intense pains in my joints. It was labeled as juvenile arthritis and spondyloarthopy. In college, I caught a virus. Most likely it was mono or the like. I slept for a good month, but certain strange events happened as I healed. The most memorable being that every time I sat up from bed, I would black out. A year or so later, I was having regular bouts of pain, fatigue, nerve changes, dizzy spells – the list went on and on. At various points, I was diagnosed with seronegative rheumatoid, lupus, and often told that I had a high likelihood of a muscle or neurological disease like multiple sclerosis.

In January, after a decade crashes (or flares as I’ve called them) and easier times over and over again, I claimed Fearless Health. This would be my year of healing. And, well, I guess it has just recently become that! I was blessed to be one of 4 appointments a year that Mayo Rheumatology would consult on. Additionally, I was given consults with Integrative Medicine, Physical Therapy, and Podiatry.

Round 1. I don’t have any of the markers for a rheumatologic disease. I cry (again) because it sucks not knowing why you feel so awful. I am sent to Physical Therapy as they note I have severe hypermobility which has caused some osteoarthritis in my hands, knees, and ankles.

Round 2. Physical therapy is AMAZING. But more exhausting than I ever thought that it would be. Like crazy exhausting, where the next day I can’t function. Apparently, that’s not normal. I cry some more. I am HUGELY blessed to work from home with an incredibly supportive spouse – but I want a normal life. The normal life a post-postpartum depression and anxiety mama craves. Who doesn’t want a normal life?!

P.S. PT says I should fully recover mobility (like long walks and strength training) once we build enough muscle to support all of my hypermobile joints. That’s pretty cool… but…

Round 3. My world is turned upside down. All of my decade-long symptoms are read. Diagnosis is officially made through Mayo’s specialty departments. I am told that I have SEID or Systemic Exersion Intolerance Disease, formerly known as Chronic Fatigue, and now recognized as a neuroimmune disease. I’m not just tired.

The condition, which can render people housebound or bedridden and unable to work or go to school, is believed to affect between 860,000 and 2.5 million Americans.

The symptoms and signs of systemic exertion intolerance disease are relatively specific:

increased malaise (extreme exhaustion and sickness) following physical activity or mental exertionproblems with sleep, difficulties with memory and concentration, persistent muscle pain, joint pain (without redness or swelling), headaches, tender lymph nodes in the neck or armpit, sore throat, brain fog (feeling like you’re in a mental fog), difficulty maintaining an upright position, dizziness, balance problems or fainting, allergies or sensitivities to foods, odors, chemicals, medications, or noise, irritable bowel, chills and night sweats, visual disturbances (sensitivity to light, blurring, eye pain)depression or mood problems (irritability, mood swings, anxiety, panic attacks)

CDC studies show that CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD), and similar chronic conditions. For most patients, CFS significantly limits their work, school, and family activities for periods of time.

Welcome to my world.

A decade of symptoms and shame.

Ten + doctors.

Four states.

One diagnosis – NOT unknown.

I am pretty teary today… for so many reasons: I’m TIRED (let’s laugh about that symptom, for real!); I am thankful that I work on my time and not on someone else’s; and for the first time in my adult life… I know why I feel pretty dang awful. I am teary because of all the moment’s that I have been made to feel less than (by others and by myself – let’s give credit where it’s due) for my inability to do as much as they could. I am also teary because I know that God’s got this. He’s known all along how my body works and He asks me to pause time and again – which I childishly ignore. (I think I’m going to listen now – in case you are wondering.)

And finally, I am teary because I know that if God’s got this – I’ve got this. I have work to do. Big work on me and my relationship with life, big work to spread the message that we are ALL worthy of healing, and big work to teach that a “new normal” is OKAY. Actually, I bet it can be downright amazing.

Thank you for listening. I know that this is long. I also know that I couldn’t keep it in… how can you celebrate a moment this big (Diagnosis Not Unknown) if those you love aren’t celebrating it with you?

So, if you feel the spark… celebrate with me today. I’m not the only one out there on this road, and I pray to not be the only one spreading awareness either.

xox

Mama J.

The Summer of Self-Love

Last week, after watching a YouTube video by the inspiring Tony Robbins, I realized two things: 1. The day before might have been the first time in the history of my life that I had prayed specifically for myself; and 2. Everything – your entire world and what you co-create – starts with love. And love, starts with you.

These were pretty powerful realizations for someone who shouts self-love from the rooftops! Just because I offer myself random acts of kindness, which I do, does not mean that I am truly loving and honoring myself and my adventure every single day. In what I have claimed as “The Summer of Self-Love”, it means that YES, I am going to boldly love myself (I just bought myself my FIRST brand new bicycle of adulthood), and I will focus on the number 90. 90% that is. If my well is not at least 90% full when I wake up each morning, I will seek out ways to fill it. We best love others when we love ourselves, first.

So, in putting the 90 rule out there, I am stepping into a gray zone. What does it mean to be 90% full? Does that mean that I stop, drop, and yoga when I’m feeling less than? Do I pause to pray for myself as soon as I feel on the brink of 89? Do I cancel plans last minute, because healing is my priority – and I cannot serve well without being at my best?? I have to honestly say that I don’t know yet. I just know that I will be taking my “temperature” without being sick. I will be focusing on full instead of wallowing on empty. I believe that this summer is going to be absolutely amazing! This summer is going to be the best summer of my life. And next summer will be even better. And all the spaces in between and far beyond are going to look so very different than they have before.

As our pastor said this week, what if we just prayed and obeyed? This definitely applies to The Summer of Self-Love. It also applies to motherhood, entrepreneur life, and healing from autoimmune. Pray and obey. Simple, sweet, and extraordinary. Lives change when we are brought to our knees.

I look forward to sharing The Summer of Self-Love’s perspective with with my team tonight. It’s such a blessing to be on the path of fearless health, and feel completely supported. I have much gratitude for being allowed to support their adventures!

Peace & Love,

Jennifer

Please note that for years I have written “fighting autoimmune,” as I share my journey, but since my body already fights itself (that is what autoimmune IS – the immune system attacks itself), I have decided that it is time to take a different approach. I choose love. Love heals all. Let’s heal together.