Tuesday, April 8, 2014

Temptation and Being Defined

The last month has been filled with all kinds of emotion.

We've been {mastocytosis} sick, and then we've had days where we were surprisingly well; our life has felt much like that of a pendulum swinging back and forth.

Chelsea started having reactions and migraines and Gavin is showing signs that is stomach acid levels aren't stable anymore. He also had his first reaction today in a long time.

I started going into anaphylaxis on Sunday morning, probably because of the weather change, and thankfully, I was able to get in enough meds and IV fluids to calm it down without an epi pen...and in the process, I discovered my epi pen had expired.

OOPS. Praise God for rescuing me on that one....

We've been on vacation, and on that vacation, we celebrated Chelsea's 12th birthday with her best friends. {All the photos from her party at our happy place vacation spot will be in my next post}. :)

We've spent a lot of time homeschooling, going to doctor's offices, I have had more medical tests, we've run a million errands, had play dates, driving from here to there over and over, and I even re-started photo shoots since I have started having good days again.

We have read of suffering, cried over the loss of loved ones, and for the loss that others dear to us are experiencing.

Last, we are preparing for my mom's kidney surgery on Thursday and because she is an emotional wreck over the fear of something going wrong, it's making me an emotional wreck and scared that something will go wrong.

It's pretty much all the normal mom stuff with some extra added crazy due to our diseases and illnesses!

Last night, I had SO much on my mind just with my own body, my own disease, and what the last 11 months have been like since I got deathly ill and almost died. Then I started tripping out over how long it took me to find out that I almost died because I have no recollection of any of it....which led to me being dumbfounded that I can have no recollection of any of it.

And then when I realized that it will be a year in one month since it happened and that I still haven't recovered from it yet, I wanted to freak out. And then I started thinking about everything else I wrote about above, and it was all I could do to not explode.

So I read my Bible and I prayed and then I posted this on my Instagram and Facebook pages:

Happy, fearful, thankful, anxious, overwhelmed, grateful, sad, mad, relieved, regret, guilt, content, contemplation, humility, reminiscing, wonderment, shock, awestruck, reprieve, frustrated, discouraged, jealous, panic, pain, fatigue, weakness, energetic, excited, encouraged, rejoicing, crying, always trusting, always clinging to truth, and sometimes, all in the same day.  #mylifewithachronicillness

I am here, I am healed (not cured, healed). We have happy wonderful days filled with laughter and smiles and lots of snuggles. I have a lot to be thankful for and I AM thankful for SO much...so much bad that could have happened that didn't, so much that I have that I may not have gotten.

I love so much of my life and I love my family and friends that are in it....but I have to confess that I caught myself in the waiting for "the other shoe to drop" mode. I needed a heart-check because I felt my attitude giving more attention to all my "what if's"....what if we stop being stable, what if Gavin gets really sick again, what if Chelsea does, what if I do, what if this and what if that, and on and on.

That kind of thinking is something that should never get ANY of my attention. EVER.

But that's the way Satan tempts me the most.

Because we have had so many illnesses and rare diseases, serious reactions and some near death experiences, when things calm down, or when mild or even moderate episodes start re-appearing, I wonder when the next serious illness or reaction will occur.

It's horrible. The doubt and the fear are dreadful. I hate it.

While I am human and a sinner saved by grace, it doesn't make giving into this temptation okay.

However, it does make me think on this verse more often as I pray for more faith and less fear:

Mark 9:20-24 NLT
"Have mercy on us and help us, if you can.”
“What do you mean, ‘If I can’?” Jesus asked. “Anything is possible if a person believes.”
The father instantly cried out, “I do believe, but help me overcome my unbelief!”

I have to say that I think about being chronically ill a lot, especially when one of us isn't feeling well (which is kind of always in one way or another). So I have frequented many on-line forums and blogs, written by mostly women, who have chronic illnesses because I am either looking for support or for others to support, or sometimes I am looking for answers to questions that I have about my disease or I am wondering about any new treatments that work, etc..

And many a time, I have come across the statement, "My disease doesn't define me and I won't let it." Or "I won't let it change who I am" or "I won't let it control me".

Frankly, I just don't see how it's possible to have it not do all of those things but I decided after some contemplation that I personally don't see that as a bad thing.

Even though I am weak on my own strength, my disease does not define me as weak; on the contrary, in, through and because of Christ, when I am weak, I am defined as strong.  

My weakness also gives the Lord an avenue to display His work and His perfect power in my life, not only for my benefit, but for others as well so living with all of it is not for nothing. So having a chronic illness defines me as one that was created with that specific purpose in mind. 

Biblically, my struggles with a chronic disease defines me as "one who endures with perseverance, who has a strength of character, and a confident hope that doesn't disappoint". I love that. Without suffering, this endurance-growing, character-building, and confident hope-filling wouldn't be a part of my daily life.

Being chronically ill constantly reminds me that someday, I will be made new; I will be given a new body that doesn't get sick. Ever. Someday, when Christ returns, He will make ALL things new and we will be without all suffering for all of eternity. Thus, my illness makes me yearn for that new body and that eternity, and I don't think I would be doing that if I was without suffering.

Don't misunderstand; none of this makes me love my illness, or my son's, or my daughter's, or my husband's; I struggle to "rejoice in suffering"....in fact, I have to confess that I usually don't.

However, the Lord is sovereign and I know His loving hand is active in my daily {sick} life working out all things for good, according to His purpose for me, and so the many ways my illness defines me through Christ encourages me.

So while this "weeping remains for a night", I KNOW that "joy will come in the morning" and being transformed into one that clings to this because of her illness isn't something I am embarrassed of....

I actually like the way it defines me because of Christ.

2 Corinthians 12:9-11 NLT
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

Romans 5:3-5 NLT
We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.

John 9:1-3 NIV
As he {Jesus} went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”. “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him."

Romans 8:28 NLT
And we know that God causes everything to work together for the good of those who love God and are called according to His purpose for them. 

Psalm 30:5 NLT
For his anger lasts only a moment, but his favor lasts a lifetime!  Weeping may last through the night, but joy comes with the morning.

Revelation 21:5 ESV
And he who was seated on the throne said, “Behold, I am making all things new.” Also he said, “Write this down, for these words are trustworthy and true.


  1. Oh my goodness... You have a great faith. That is a lot to go through. I will pray for you!

    ~Sarah <3

  2. Re: The expired epi. Expired epi-pens aren't that big of a deal, a study found that they still have 99% efficacy at least 1 year after their expiration. As long as it's not cloudy I hold onto the expired ones. (I always have a pack of new ones too but will use the expired first)

    "My grace is sufficient for you, for my power is made perfect in weakness." Is my masto verse. I, of course, pray for complete healing from this disease. But I understand that God is doing great things through me while I have this disease. I would never have gotten to do so many of the things that I have if I hadn't have been diagnosed with masto. I wrote a blog post on 10 things that mastocytosis has taught me, and reflecting on that was such a good thing for me. It's easy to get bogged down in the day-to-day. But in the big picture this disease has taught me patience, and gratitude and has shown me the amazing capacity for compassion my children have.
    Praying for you and your family and your mom! Hope the surgery goes extremely smoothly


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