A “New Normal”

IMG_4126I keep hearing those words. I’ve heard those words since January 2012. If you know any of our story, you know my husband was admitted to the hospital (twice) in Jan of 2012.  He had excruciating abdominal pain. Isn’t that like the worse symptom to head to the ER for when you’re looking for serious answers? They did EVERY GI test that’s ever been administered. I’m. Not. Kidding. He swallowed a pill that had a CAMERA in it…incredible technology we have these days. Not quite incredible enough to actually find out what was wrong with him for a while or to bring him any relief. Fast forward…they did find some thoracic disc issues. Big ones. Turns out, no one will do surgery in your thoracic spine (or really even do much for you…ahem…Mayo Clinic…yeah-expensive and unproductive trip). So his discs cause radiating nerve pain to his abdomen. Who knew…I wish we didn’t.

But do you know what he preached about today? (That’s what he does…he’s a pastor. More than that, his life calling and career is about loving people and MY GOODNESS he does that SO well). He discussed what a disciple is and looks like.

1. Humiliation

2. Adoration

3. Education

The absolutely most attractive thing about my husband is what also challenges me to the core of my existence. He is the most humble person I know (and I’m going to hear about this post because, although he’ll appreciate the words of affirmation, he’ll be too humble to deeply enjoy all this doting).

I nearly melt into a puddle of tears and conviction when I think about the countless conversations, trips to serve, & selfless ways he continues to love others and our family so passionately. He just wants us to know Jesus. To love Jesus. And to become more like Jesus.

The challenge at the end of the message today what to look to these areas and really ask what is keeping us from experiencing these 3 areas full on?

It was so easy to just say “humiliation”-yep definitely need more of that. Then I thought, “really? you love JESUS enough you don’t need some adoration?”. Okay, got it…I could love Jesus more. Then, in a convicted, yet full of grace, mess…I thought, man, I need to KNOW Jesus more and know more of Him.

The last….well, I was going to say 6 months, but being completely honest, the last 3 years have been the most physically demanding and challenging years of our lives. So along with medicines, injections, blah blah blah that he has tried in order to heed doctors (and his loving, encouraging, and never nagging wife’s) suggestions he has also been hospitalized for rabdomyolsis in October 2013 (I’m not even googling that spelling!) which we have NO idea how that came up (they actually said it was an unknown virus that his body couldn’t kick but the symptoms were too similar they kept calling it “rabdo”) and kidney stones this last spring. He has been THROUGH it. You wouldn’t know it though. The man never complains and works his tail off and never shows weakness or frustration.

In December of 2014, I was hospitalized for the loss of vision in my left eye. I know! Who knew that would send you to the hospital?! Well, turns out I needed a STIFF dose (okay a LOT of stiff doses) of steroids through an IV). I was in there through Christmas and I missed my grandmother’s funeral. Totally lame and such a bummer. There were comments about this being a “classic sign of MS in women your age”. I definitely kicked that to the curb. NOPE. I do not have MS. That sounds serious and like a lot of work and like a lifetime of fighting. I am not signing up for that one!

This picture was taken in the hospital on Christmas Eve when my thoughtful husband brought garland, twinkling lights, a mini tree and my Christmas present to the hospital room to decorate for Christmas.

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So, I get out of the hospital, totally filled to the rim with steroids (that will mess you up!). When I came down off of those, they wanted to do a spinal tap (lumbar puncture they call it to trick you so you don’t think it’s the same). Well, I wasn’t hydrated enough and it took HOURS and was terrible. Then I had the worst headache of my life for 5 days. (side note, this is when I became SOLD on essential oils because peppermint essential oil saved me from a blood patch being the end of the road for that spinal headache!)

There were MS markers but the neurologist wasn’t confident giving me a diagnosis yet. And, like I said, No thank you! I don’t have MS.

So I rock on for a year with no episodes (so I thought). In February of this year I lost vision in my left again. It was only for 2 hours but my husband turned the tables on me! Ahhh..changing the rules and the game. He told me to call the ophthalmologist. Yes sir :/ So I went in a few hours later (vision returned) and his full eye exam showed everything to be fine. Awesome! He told me he was making an appt with my neurologist. NOOOOOOO. My heart knew where he was going with this.

Wouldn’t you know the Lord works…He knows when He’s handing us something hard. But He knows us so intimately that He sets His plans into motion in such a way that it’s manageable for our hearts so long as we find our hope in Him. He knows what He’s placing before us will rock our world…that will break our hearts….that it will take us deeper than we’ve ever been before….and that it will cause us to come to our knees. However, in the midst of allll of that heartache, He is gentle and compassionate.

So in the few weeks between my eye exam and my neurologist appointment, I lost feeling on my right side. I continued to deny what I really expected to be coming. I mean, isn’t it TOTALLY common to lose vision or lose feeling in your limbs?!? Turns out, nope, it’s not normal.

Neurologist orders MRIs. Brain, neck, and thoracic spine (I’ve learned a LOT about those taking care of my husband!) The MRIs took sooooooooooo long (3 1/2 hours) without contrast that I wimped out (well, later found out that amount of time is SO not normal!) and had to go back for MRIs with contrast.

I have a few more symptoms waiting on appt to hear results of MRIs. I laugh at them, again, thinking…eh, I’m 33. Things are just going a little downhill?!

Follow-up::he takes us out of the exam room and into his office to show up images on a computer. Then he spews the word “lesions” which I’ve only heard from precious cancer patients. He says, this is definitely MS.

I do what I always do, by God’s grace. “okay Lord-you’re in control. this is going to be hard but you’re going to use it and it’s going to bring your glory and it’s going to help me help others cope with their experiences and life circumstances”

He offers to refer me to UT Southwestern and we say Yes Please!

I CONTINUE to act like we’re still working towards answers until my visit 2 months later at UTSouthwestern.

We visited with an incredible doctor. He explained my MRI images to me and even found more issues in my spinal cord that had not yet been seen/discussed. He told us that this disease is not curable and it’s not predictable. He said if we wanted to extend our family that pregnancy is great therapy for MS (something about what happens in the body during pregnancy and the hormones) and that now is the time especially for my age.

Then he said “gluten free, dairy free, and look up the autoimmune diet”. So, by look up, I started with Pinterest. My husband said, “I’m all in”. We immediately stopped drinking Dr. Pepper (just typing that I want one right now). We’ve been on this protocol for 9 days.

Speaking of that adoration of Jesus is a sign of a disciple, my newest prayer is that I would hunger and thirst after Him like I long for some of the foods that our diet doesn’t allow for right now. I am not a picky eater (which is the only way I’m surviving this diet), but when you go to a movie….no soda and no candy and no popcorn. Food is so much a part of our experiences and pleasures. I have told my husband for so long that I don’t LOVE food, but I tell you one thing, I love CONVENIENT food! I wish I could say this was at least saving us money, but what we haven’t spent eating out we have spent 3 fold on expensive healthy alternatives to help me cook from scratch so that we can have one morsel (oh … a morsel… a chocolate one….haha) of something savory and comforting.

I long for my heart to crave Jesus as much as my brain is craving a delightfully non-AIP meal or drink right now.

My normal is shifting quickly as I recognize that my meter for loving and serving Jesus has been off kilter. My normal is shifting as I realize I have limitations that are new and painful and, if allowed by the enemy, will steal my joy from what beautiful blessings I’m here to enjoy today. My normal is shifting as I hurt because I would rather care for my husband than hear myself whine about my diagnosis or this uncomfortable diet. My normal is shifting because…there is no normal.

Our lives have crashed into a yucky storm of chronic pain & autoimmune disease and we are content that He’s in control and He loves us.

It doesn’t mean I don’t cry sometimes for fear of what the future may hold and my husband wipes my tears and reminds me “don’t borrow trouble”. It doesn’t mean that I don’t ask him how his pain is today and try to find an essential oil or an ice pack to help ease the remainder of his pain. It doesn’t mean that we don’t work so very hard to love others and serve them fervently to help ease a little of the selfishness that the enemy tries to wrap us up in on a daily basis. Most of all, it doesn’t mean that we don’t love each other so deeply and richly because Jesus is that to us—and we look at each other when our boy ask to do something that we’re pretty confident may wear us out/hurt us to the brink….but we don’t care because we trust the Lord and we LOVE our boys and their memories! We desperately long for their memories to be filled with a momma and dadda who fought hard to be with them and to enjoy life with them.

Normal doesn’t exist. Humiliation, adoration, and education are where it’s at for a believer who wants to be like Jesus. In those we find His grace to pour into us who and what Jesus was….LOVE.

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4 thoughts on “A “New Normal”

  1. Proud of your diligence to fight for joy, branching out and trying new things (and you always say you’re not a cook- look at you now!) and continuing to point yourself and others back to Christ! Love you friend!

  2. Wow Melissa I knew you had suffered with Brady’s health challenges but I had no idea you were facing this. We will be lifting you up. Thank you for sharing.

  3. Hi! Shae Moore sent me the link to your blog. I was diagnosed with MS this summer also, and am also a pastor’s wife. I’d love to connect with you as a fellow sister in Christ who is walking the same road.

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