Things That Make You Go..... Huh?

Hello again! Yes, it's been three years since I have blogged, but, have some grace. I've been a little distracted.

Truthfully the only reason I am writing this blog today is that I figured it was the best way to get a large amount of information out on the latest developments of what I call the "Hiccup of 2015." Basically, I have some test results for you.

Turns out that I am one in 750,000. My cousin's wife, Malinda, told me that she thought I was one in a million, but turns out I'm just one in 750,000. I have a genetic deficiency that showed up in my cerebral spinal fluid. It is called Tetrahydrobiopterin Deficiency, and is mostly associated with infants who have PKU. I do not have PKU, but, I also do not have tetrahydrobiopterin. My level was undetectable. From what I understand, tetrahydrobiopterin is a cofactor of amino acids in the brain that are essential to the biosynthesis of neurotransmitters. Without this cofactor, my brain cannot keep up with the demands of making these precious neurotransmitters, which, I think, is why I looked like a Parkinson's patient this summer. Here's some interesting tidbits that I have put together:

1) The treatment for Tetrahydrobiopterin deficiency is Kuvan or Leucovorin. Leucovorin is high dose folinic acid. It is also what Clay and Kylie take twice daily and has made the biggest improvement with their neurological health. So I am hopeful and a little curious to see if it will help me, too. Their genetic deficiency was inherited on my side (sorry kids) so it makes sense that I have some sort of it as well.

2) PKU infants and children who are not treated properly have four main deficits in their intellectual abilities. Interestingly, this spring and summer when I was at my worst, I exhibited severe deficits in those same four areas. In fact, my cognitive evaluation that I underwent in August confirms it.

3) Leucovorin costs $1400 a month, and our insurance doesn't cover it. Clay and Kylie receive it because they have secondary insurance that does cover it. I still haven't figured out how I am going to get it approved but I'm working on it.

4) Lastly, my new diagnosis of Tetrahydrobiopterin Deficiency doesn't answer all the questions that we have. It does answer a lot of the cognitive and motor skill questions, but it is not associated with Erythromelalgia, Levido Reticularis, or any of the other auto-immune concerns that I have. It doesn't answer why I continue to experience joint and muscle pain and fatigue. It does answer so many concerns, including that I probably do not have MS, ALS, Parkinson's or any of those other scary diagnoses that we were looking into.

I will be seeing my Rheumatologist this Wednesday, and I am interested in what he thinks of this little new development. My Neurologist contacted my Rheumatologist last week, and, because I am having symptoms again of Lupus, they decided that I should be on plaquenil again. This Wednesday I will find out if I will also start methotrexate along with the plaquenil. I have also restarted low dose oral steroids.

One thing I really wanted to say is thank you to all the people who have prayed for me and my family. This makes me really teary to think about. I know many people who I have never met, many churches where we have never attended, and Christians in countries where we have never visited have been praying for me. And not once in a blue moon. Like living in prayer and walking this walk WITH us. Just this past Sunday I spoke with a visitor from another congregation who told me how she and her church family have been praying for me. She knew all about my illness and my family. And I had never met her before. She has family who worship with us, and my dad and stepmother worship with her. And that's just one story of many.

God has really amazed me with the amount of love He has given to me through His people. I feel that He is using His people to show me how active He is in our lives, a concept that I knew before but am seeing in a different light now. I have had complete strangers encourage me in the Lord, and their encouragement to me is an exact answer to a doubt that I had voiced in prayer and told no one about. I have been blessed to meet and make friends with many who work with KLRC, the Christian radio station here in NWA. They have dedicated prayer time to me and my family. They email me and keep in contact with me, always asking how they can pray for us.I know that many of their listeners have heard our story on the radio, and have prayed for us. Complete strangers to me. But they are praying for me and my family. I know they are, because I am getting better again. And that is only because the power of prayer.

When I think about how He has worked in the lives of my children I drop immediately to my knees, just thanking Him over and over for how He has protected their hearts and built their faith through the events of the last three years.

It has been three years. Three years ago September 2012 was the first hospitalization. My symptoms started way months before that, dating back to Fall 2011. Oh my goodness I just can't believe that I have been dealing with this for half of Kylie's life.She was four years old when I was hospitalized. She'll be eight in December.

I know that I am not the only one in this world who has ever been through hard times. Give me a break, right? EVERYONE has a story. EVERYONE has plans, only to have them changed. Tragedies much greater than mine happen every day to people who were least expecting it. There are orphans and widows in many countries who are facing greater trails. And young Christians are being murdered for confessing Christ, both in other countries AND here in our own. My trials pale in comparison to theirs. But one thing I cling to, I have seen how God has gone on before me in my own life. I see Him as this strong provider who is not hindered or even flustered with my hiccup. He did not ignore an event that changed my whole life, as well as Keith's life and the kids' lives just because He did not have an answer or He did not know what to do. No, He showed up BIG time, strong and protective. I know that I am not extra special to Him; He loves each one of us the same. So if you are facing any trial and wonder where He is, I can assure you that He is there, active in the midst of your struggle, and that He has gone on before you, protecting you in ways you may not see.

Oh God, please give us eyes to see how you are working in this world, and hearts to follow you.

To the wonderful people that I know- thank you for all the encouragement, love, support and prayers that you have given to me and my family over the years. And to the ones that I haven't met- thank you for the love, support, encouragement and prayers. I can't wait to hug your neck in Heaven some day if we do not meet before then.

Grace, peace and much love.
Michele

If I Only Had A Brain

I love the Wizard of Oz. By far, my favorite character is the Scarecrow. I have always loved him. Maybe because we share a similar build and klutziness. He is so lanky, so happy, so ready to help. You just gotta love the Scarecrow.

But he is brainless. Even though it is apparent to everyone watching the movie that the Scarecrow really has the most smarts of anyone, he thinks he needs help in that area. Why can he not see himself the way he truly is? If he could, then he would realize that he always had a brain to begin with!

Four weeks ago, almost to this very minute, I was scaring my poor wonderful colleagues to death. They thought I was having a stroke. I thought I was having a stroke. And all I could think about was that I did not have time to have a stroke, because the Women's PowerWALK Wednesday Fall 2012 Kick-Off was that night, and there was NO way I was going to miss it. Not even for a stroke.

Brainless. 

It seems so silly now, four weeks later. Not the illness, because this has been a difficult four weeks, and I am still recovering from it. My family has been put through the ringer, and I would not wish that upon any family. No, what hits me when I think of that moment, is that, truly, in that moment, when one may be thinking how their life would change post-stroke, I was thinking that I would not miss the fall kick-off. 

Nice wake-up call, Lord.

My health situation is getting better every day. There are still a few more tests to run and evaluations to occur, but most likely I have complex migraine disorder and am just waiting for the medicine to kick in. I will meet with a neurologist who specializes in demyelination diseases in two months and he will follow-up with the changes that were noticed on my MRI. I will also meet with a rheumatologist for autoimmune concerns. I did not have a stroke, and I do not have MS. My outlook is great.

Except for one big thing. I have to make a major life change. Again. Really, Lord? It seems that You call on me to make some change like.... yearly. Will I ever not be changing? Don't answer that.

Like my friend the Scarecrow, I suffer from not using my brain. Oh, I use it, don't get me wrong. I overuse it.  I just don't use it wisely. I actually had a friend of mine tell me to "Shush my brain." I suffer from Unrealistic Expectations and Over-Achievement Syndrome and am an Affirmation Addict. The thing is, I don't know any other way to be. You need a Pediatric Nurse Practitioner? I'll be the best one around. A Preacher's Wife? I'll have a smile for you. The Mother of Kids On The Spectrum Who Also Have Food Allergies? Don't worry, my children, mommy will make sure that not only do you have a cupcake available at your class party, but that it will be the best looking and tasting cupcake in the room so that all of your gluten-filled friends will look at you in envy and you will not feel left-out or freakish in any way. The list goes on and on, unfortunately. 

What God has shown me more in the past four weeks is that I am going to have to make some major life changes in how I approach my life. In some ways, that will be much harder than dealing with an illness. I mean, seriously, I am a PNP and mother to two special needs kids. I can handle illness. But, allowing God to change who I am and how I respond to life? That's a much harder pill to swallow. 

I am going to have to learn to "Be still and know" and not "be active and go". I am going to have to rely on others more. That will be a hard one. I am going to have to go to God with my insecurities on how I am spending my time and not seek affirmation from others. I am going to have to let my kids feel the pain of failing. I am going to have to listen to my body. What happened four weeks ago was not a fluke. You see, I have been having some combination of severe headaches, double vision, right-sided weakness and numbness for months. MONTHS. I just chose to ignore the symptoms because I thought I did not have the time to deal with them. And I bought flat shoes so that if I fell, I would not fall far. Seriously. I did that. Instead of thinking, maybe I should slow down and check out why I am having these symptoms, I bought some shoes to be a band-aid that would cover my boo-boo. 

Totally brainless.

We all have those experiences in life when something totally unexpected happens that turns your life upside-down. Unfortunately there does not seem to be a limit on how many times this can happen to one person or family. Nor does there seem to be some kind of time restraint, as in, only this amount of turmoil can occur to this person/family during this allotted time. We have the reassurance that God is not going to give us more than we can handle. That He was fully aware of the impending situation and is with us during that time, and has moved on before us, guiding us through it, preparing the way for His glory to be revealed to us and through us. And we think of Job. I say that as a joke, but I am being a little serious here. Job's life comes to mind as we struggle through our whirlwind, trying to make sense of it all.

In the past four weeks I have spoken with many friends who are currently struggling with some life-altering changes. Some of these changes are occurring in their lives and some are taking place in the lives of their loved ones. These are not small changes. Some of my friends have lost loved ones this month. Some are facing major health concerns. Some have lost jobs and do not have any prospects in sight. Some are divorcing the ones they thought they would spend the rest of their lives with. Situations that drive you to your knees before our Lord and ask for help. 

What I would say to them now is to Be Still and Know. That you are dearly loved by God. Your life situation may have totally shocked you, or, maybe you are like me, and chose to ignore the warning signs. Either way, God has already gone before you in this situation. He has a plan. This doesn't mean that you won't be making some major life changes, just like I am being called to do. It doesn't mean that the end results of these situations won't be life-altering or difficult. But remember that the same hands that made the stars are holding you in this time. That the same power that raised Jesus from the dead is at work in your life. That Satan would love to confuse your mind to think that God would not allow such things to happen to you if He loved you. But we know the truth: that these trials that come will only draw us closer to Him if we are honest with Him and ourselves. 

Hold close to this promise found in Micah 7:8 "Do not gloat over me, my enemy! Though I have fallen, I will rise. Though I sit in darkness, the LORD will be my light."

The World Did Not Come To An End

Well, it has been one year and one month now since our family began eliminating gluten and dairy from our diet.

It seems like such a daunting task at first. I mean, just the very mention of being gluten or dairy free brings about a negative response, such as "I'd die first." Yes, someone actually said that to me. And I use to feel that way about our lifestyle.

However, last Spring, under the advice of some really smart medical providers, we went GFCF, and do you know what happened?

The earth kept spinning and the sun kept rising every morning. The world did not come to an end.

It was overwhelming at first. It still is sometimes. The hardest part of being GFCF is that it makes you have to plan ahead for meals and snacks. No more fast options for hungry kids. No more McDonald's (even though Chick-Fil-A has become my best friend!). No more opening a package for a snack. Now, when one of the Kilmer kids whines "I'm hungry" my response is "Go eat some fruit." I know that may sound like a healthy solution, but the problem is that the kids get hungry more often and we are all still having a hard time believing that we don't need a bunch of starch-filled artificially-flavored preservative-packed food in our systems. GFCF snacks tend to be lower in carbs, meaning the kids are hungry more often.

I have to actually plan for meals and snacks. Sometimes I get on a roll with it and I am so proud of myself. I will spend hours in the kitchen preparing fruit and GFCF protein snacks for the entire week. Then my proud moment fades quickly as the Kilmer kids ransack the entire stock of GFCF goodies within one day, leaving me to scrounge around for more snacks.

They are growing kids, after all.

But that is the thing. They are growing. They are taking less medicine than they were before. Clay and Kylie's skin looks much better. Kylie has no more eczema at all. Kenzie and Kylie do not complain as much about abdominal pain. Kenzie is actually much more active and participated in track this year.

And I have gotten pretty good at making some yummy GFCF snacks. I have pinned a lot of recipes on my pinterest board. I know that I should be writing them down here in blog-land, but, let's face it, that's just not happening. But I actually enjoy cooking GFCF meals now. I'll be honest, it is much harder to be dairy free than gluten free, but I lately I have found some amazing vegan cookbooks that have really helped me out a lot in that area.

So, what piece of advice could I share with anyone who is contemplating going GF or dairy free, or both?

I would want you to know that you can do it. You will not die :) Take it slowly, get some help from emeals.com, and read some great blogs. Enjoy the sunrise the next morning. The world will not stop spinning, I promise!