IVIG - take 2!

Last week was a big week!  I spent five days (as an outpatient) at the Cancer Care Center in Frederick hanging out with some awesome people and getting my IVIG on!  Those chairs bring back memories…they're the same ones that are in the hospital rooms.  This time around, I am strong enough to operate the chair myself!!  Needing to be in treatment for more than 4 hours means arriving early…which means getting your choice of chair (very important, once you learn that only 2 or 3 of the trays actually function)!

See that bottle?  This treatment is only made possible by generous blood donors (IG is a blood product).  It takes approximately 2,000 donors for one bottle of IVIG.  I had anywhere from 2-4 bottles each day during my 5 day treatment.  To those of you that are blood donors, thank you from the bottom of my heart.  You have saved my life. To those who have never given blood, please consider it!  What a beautiful way to show Christ's love to one another.  If I could donate myself, I would (I've always been anemic so they weren't interested in my donation).  :)

My sweet hookup for the week!  The stuff on the left is Benadryl, to prevent allergic reactions.  It made me SO sleepy, so I didn't really get a chance to do any of the cool activities I planned on (reading 3 books was a bit ambitious).

Still smiling! 

If you're really awesome, they let you keep the IV in your arm overnight at home so the nurses don't need to re-stick you in the morning!  That fancy net keeps it all nicely contained.

So the number one question I've been getting since the treatment is…how are you feeling?!?

My answer remains the same as always: today is a good day!  

IVIG works differently in everyone, but for me it is slow to show itself.  I don't feel any different for the first 3-4 days of the 5 day cycles.  The last day is when the improvements generally begin; last time it was with the ability to bend my legs again.  This time, I've noted my muscle pain is reduced, which was one of the outcomes I was praying for!  Because of the latest IVIG treatment, I am now able to do things like put my socks and shoes on with minimal pain and discomfort; a huge victory!!  In the last day or two, I have also noticed that it's getting easier to walk up the stairs - still not "normal", but definitely improved.  Although I know it is not a cure, I am excited to see how the IVIG will continue to work over the coming weeks!  Living with CIDP  is a daily reminder to be content.  There are still things I cannot physically do, but I choose to focus on the things I can do, celebrating even the smallest of victories.  Last night, I danced (badly…I can't dance) while washing the dishes.  A few months ago, I couldn't lift an empty pot out of the sink.  God is amazing!!

We are praying most especially that this treatment will prevent a relapse after our sweet girl is born in less than two months.  Thank you for joining us in prayer!!

Saying Yes

Today's post is part of a blog link-up with Blessed is She!  If you are looking for an amazing community of Catholic women and great devotionals, I really encourage you to check them out!  Today's #BISsisterhood topic is obedience.

I am a planner by nature.  I generally do very well with life, as long as whatever happens was part of my plan (I can hear God chuckling at me now).  By the time I was 15, I had the next ten years of my life beautifully laid out in a neat little timeline; I "knew" when I was getting married, when I would have my first child, when we would buy our first house, and how many children we would have.  My plan was beautiful, it was perfect, and it left no room for life to actually happen.

I spent the majority of my teen years and a good part of my twenties fighting God's will for my life.  I couldn't understand why He was allowing all of these seemingly terrible things to happen to me.  "Why me?" was a running track in my head, and it wasn't pretty.  I was depressed, anxious, and angry that my perfect plan wasn't working at all like I'd hoped.

I don't remember the exact moment, but at some point I woke up in life and realized that I wasn't in charge.  I knew, of course, that God was in control of my life, but I didn't believe that He was in control.  I was exhausted from trying life my way, and longing for something I just couldn't find.  It was time for a change, and that change was obedience.  It was time for me to humble myself and say yes to God's will for my life.

I wish I could write that the moment I said yes to God life became a garden of sunshine and roses, but that's not how He works.  God doesn't want us to suffer, He wants us to grow.   

Being obedient to God and saying yes every day is messy, but it is beautiful.  Several people have asked how I can remain joyful through all the sufferings of life, and I'm slowly learning the answer; obedience to Christ's will for my life.  When I submit to His will, I have nothing to worry about because I've stopped trying to make my plan work. It's freeing and brings me so much peace, in spite of whatever suffering is asked of me.  I can suffer with joy in my heart, because I know God is using every part of my life for His glory…every moment is an opportunity to grow closer to Him, to say yes and watch Him work.

The morning offering has become one of my favorite prayers because it reminds me to say yes every day.  I love to meditate on the words and soak them into my heart.

Morning Offering
Dear Lord, I do not know what will happen to me today. I only know that nothing will happen that was not foreseen by You, and directed to my greater good from all eternity. I adore Your holy and unfathomable plans, and submit to them with all my heart for love of You, the Pope, and the Immaculate Heart of Mary. Amen.

"Faithful you have been, and faithful you will be
You pledge yourself to me, and it's why I sing
Your praise will ever be on my lips." - Bethel Music

Trust with Pennies

Today's post is part of a blog link-up with Blessed is She!  If you are looking for an amazing community of Catholic women and great devotionals, I really encourage you to check them out!  Today's #BISsisterhood topic is trust.

I had to smile when I saw that this week's topic was "trust".  God knows exactly what we need, right when we need it.  I am reminded over and over again that He really does hear and see us.

My dad tried for years when I was a teen to get me to understand financial responsibility.  I understood on a surface level, but not a real-world-adult level, so I was not smart with the money I made working as a teen and young adult.  I cringe when I think of how much money I wasted on clothes and concert tickets, especially on days like today.

Thomas and I have been married for nearly 4 years (time flies!), and money has always been "tight".  By tight, I mean that we've gone through several periods of un (or under) employment, and two medical crisis that left Thomas unable to work, and me without a job. It has been stressful.  It has been humbling.  It has required so much trust.

These last few months have been good to us; we were just starting to pick ourselves up from the most recent medical crisis, and I had finally found budgeting software that was written in "Meesh" as we like to say.  It made sense to my brain, and as a result we actually had a working family budget.  It felt great!  I have just started reading Dave Ramsey's Total Money Makeover book, and we were beginning the first baby step: saving an emergency fund.  

Then Toyota called with a report on our car in the shop.  The brakes need to be replaced, and it's not covered in the warranty.

To quote Mr. Ramsey, "I am positive; it is going to rain, so you need a rainy day fund."  

I would also add trusting God in there as an essential part of your rain attire…just sayin'.

So now we pray, trust, and humble ourselves yet again.  Asking for help, and trusting that God will provide has got to be one of the hardest things I have ever attempted in my life.  As many times as we've needed the support and generosity of others in our life, it has not gotten any easier to ask for or receive it.  God has spent my entire worry-filled-the-sky-is-falling life telling me to trust Him.  I'm honestly amazed and oh-so-thankful He hasn't just given up altogether at this point.  Praise God for His mercy, compassion, and grace!!  He is so good to me; I know I am so undeserving.  Still, my heart wants nothing more than to please Him and live His will for my life.  

To trust in His will, not mine.  To know without a doubt that He will carry me through.  I am positive, He is with me, and He will take care of me, as He's done so many times before.

So we will continue to save our pennies, and trust that they will provide for our family's needs.  We will strive day after day to be excellent stewards of the blessings given to us, knowing that He sees us and our needs.

For an extra dose of trusting God this week, my neurologist informed me that my insurance denied my request for treatment (thats supposed to happen next week).  She is going to call them, and is confident it will be fine, so we're just trusting God with that situation, too.  Life is always exciting!

This song had me in tears during my morning praise and worship…before I knew about the car.  He put this on my heart today as a great reminder…He knows my name.

Days, Ayiesha Woods

"But what about those days

When you just don't understand
And just when you're getting up
It seems you're falling down again

What about those times
When it's not so easy to believe
When doubt causes you to only
Go by what you see

Don't you wish that every day was an easy day
And there was nothing that you couldn't do

But if every day was an easy day
You'd never be able to say that Jesus brought you through"

This is the day the Lord has made; I will rejoice and be glad in it.

Rejoice. Be Patient. Persevere.

"Rejoice in hope, be patient in suffering, persevere in prayer." - Romans 12:12

Yesterday was one of those days.  The days that God speaks loudly in your ear and says "I hear you, child. See how much I love you?".  An answered prayer in a very big way for our family.  He hears us…and oh, how He loves us!!  There were smiles, lots of cheering, and tons of gratitude.  There was also a fantastic trip to the park with my sweet boy, which filled my heart to the brim.  All that happiness and rejoicing.  My strength for today.

Today is one of those days.  The ones that force you to search yourself for strength you're not sure you have.  The days that push you to rely on something bigger than yourself…to admit that you can't do life on your own.

These are the days that bring me to my knees.  The days of rejoicing. The days of patience.

Today I am having a repeat EMG/NCS test to see how the first round of IVIG (prayerfully) improved my nerve health.  The test takes about an hour, and isn't terribly pleasant (it involves electrically stimulating my nerves and putting needles in my muscles).  It is not as bad as a spinal tap, but would much rather be snuggling my baby toddler.

Today, with even more intent, I choose joy.  I am choosing to rejoice in the hope I have been given.  I choose to be patient during the suffering of the tests, and to persevere in prayer that the tests show some improvement.

Today's goals:
-Rejoice
-Be patient
-Persevere
-Wear pink

Choose joy.

Don't you worry 'bout a thing

"Do not worry about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God." - Phil. 4:6

There are so many wonderful verses in the bible about trusting God in all circumstances.  They always bring me such hope, peace, and joy knowing that He is in control of my life and constantly working for my good.

I have officially been scheduled for another round of IVIG this month.  It will be the same 5-day treatment that I had in December, but this time it can be done as an outpatient.  I am SO thankful to not need to be admitted to the hospital during my treatment, even though I will still be gone and "hooked up" for up to 8 hours a day.  I'm planning on doing some reading, some blogging, and lots of praying.  I'm hopeful that I will not have many of the unpleasant side effects that can come from the treatment, and trusting that God will be with me as He always is.

I'm praying that this second round of treatment will help alleviate my remaining pain and other symptoms, and allow me to lead a more active life (Eli isn't getting any slower in the running department).  I'm also praying that this treatment will prevent a major relapse once Abigail is born (something that I've been very concerned about, and is common with CIDP patients).

Would you join me in prayer, friends? Pray that this treatment is successful, with minimal complications.  Please also pray for my emotional health, as I will be away from my sweet baby toddler which has become especially hard after being hospitalized.  Let us also pray in a special way for those who are suffering with illnesses that have no treatment, no sign of relief, and those that don't have access to the treatment they need.  May God comfort them and surround them with His unending love.

My treatment will begin the week of the 23rd, after my EMG/NCS are re-done (to compare with Decembers test results).  How may I pray for each of you?

The Sparkle Dress

Some days, I really struggle with feeling beautiful in my new CIDP skin.  The muscle atrophy, pain, and continued weakness has left me not recognizing the person I see in the mirror…a weak, tired version of the woman I once knew.

Friday night, Thomas and I had a date night (with our main man Eli of course) at the "Fancy" mall a little farther from home.  We walked around admiring clothes we'll never be able to afford (or want to spend so much money on), had a nice family meal, and discovered that the maternity clothes store has a play place inside it and they give out free apple or orange juice to the moms and kids!  On our way back to the car, we passed a store that had evening gowns in the window, and I knew I had to try one on.  

Sometimes, you just have to do something just because it will make you smile.  Be kind to yourself.

Knowing we weren't planning on buying a dress like this (even though I could totally wear it while doing housework and PT), I took a few pictures to look back on during the tough days.  

The dress fit!  FOr the first time in months, I was wearing an item of clothing that fit my new body.  I felt confident, beautiful, and "like me" again.  I twirled. I laughed.  I danced.

I need to take a moment and make something very clear, though.  Even though the dress was amazing, and I loved feeling so rich and luxurious for those few minutes, I know my beauty and confidence can never come from clothes, or any other material thing.  My identity doesn't come from my diagnosis, or my dress size, it comes from Christ.  Always and forever, my identity is in Christ, and I am His.

He makes beautiful things, even when we don't recognize them.

So I rejoice at the opportunity for grace.  Grace to love myself again, just the way I am today, no matter what the future holds.  I am beautiful, because I am His; and because of that, I will dance.

Sacrificing Control

Today's post is part of a blog link-up with Blessed is She!  If you are looking for an amazing community of Catholic women and great devotionals, I really encourage you to check them out!  Today's #BISsisterhood topic is sacrifice.

Sacrifice is defined as an act of giving up something valued for the sake of something else regarded as more important or worthy.

I let that definition soak into my heart as I thought about what to write today.  

Something valued for something worthy.

I thought about what others have sacrificed for me in these past few months, what our Lord sacrificed on the cross for mankind, what I've sacrificed for others…my mind wandered.

What have I sacrificed?  Comfort? Peace of mind? Health? Sleep?  Hot coffee? My body? Happiness?  No, not any of those things.  Control?

Control.  Something valued for something worthy.

"For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope." - Jeremiah 29:11

Control is a funny thing.  We really don't have any at all, but we love to pretend.  I have always been guilty of thinking I have control over my life (or at least some control), despite the fact that God has tried over, and over, and over to show me that I am seriously stubborn mistaken.  

This week's lesson?  You cannot control a toddler, and they are much more persistent than you will ever be.

What was that, Mom?  Don't climb on the table?

I sat with Thomas last night, complaining talking about how uncertain everything is, and how out of reach a "stable life" feels for us.

"I just never thought this is where we would be nearly four years into our marriage..." I carried on.

Lord, please bless this man.  He is so patient with me in my humanness.  But, You knew he would be, after all…You are God.

And really, isn't that the point?

God is God, and I am not.

God is GOD.  I am NOT.

Little old me, one of God's beloved children…I do not get to see the future, or know precisely how the sky will fall next (will I ever be physically capable of running and playing with my children? Is this pregnancy our last? Will we ever see the end of our financial struggles? The list goes on).  I am not in control.

I am not in control.

And for me, dear friends, that is a true sacrifice...and one of God's greatest blessings to me.

I don't need to worry about the future!  God has my story already written, and His will will be done!  Oh what a relief it is to rest in Him.  I can live with HOPE because that is what he has promised me; hope for a future.  It may not be the future I imagined, but His version of my life is so much better than anything I've ever come up with.

"There were scars before my scars
Love written on the hands that hung the stars
Hope living in the blood that was spilled for me
Oh, control, it's time
Time to let you go" 
- JJ Heller, Control

Praise be to God, I am not in control.

On Being Small

                                                           

I have an announcement…I'M PREGNANT!

Shocking, I know.  "But you don't look pregnant!" "WOW! You're so tiny; you don't show at all!" "I wish I were that small when I was pregnant; you're so lucky!"

Sigh.

What these kind, well-meaning people don't realize is that comments like these actually make me a little sad.

27 Weeks

You see, I've worked so hard on growing this baby…trying to stay healthy enough to make sure she thrives and grows.  I was doing well…the first 4 weeks of the pregnancy I gained the appropriate amount of weight.  Then my body went a little nuts.

If you're reading this blog, you know all about my CIDP journey and how that has affected my body; being bed-ridden for months results in muscle atrophy…I became the amazing shrinking pregnant lady (which isn't nearly as cool as it sounds). In addition to the CIDP, I also began experiencing the symptoms of Hyperemesis Gravidarum.  

Most women experience some degree of morning sickness during the first 12 weeks of pregnancy; HG is extreme morning sickness that often results in hospitalization from severe dehydration and malnutrition.  Women with difficult cases of HG are unable to keep any food down at all, and some suffer like this through their entire pregnancy.  I suffered with severe HG for 22 weeks of my pregnancy, unable to keep even plain cheerios or soup broth down.  The nausea was 24 hours a day, 7 days a week, and despite three different anti-nausea medications and IV fluids my symptoms did not improve.  I have never…ever felt that sick in my entire life.

Between the muscle atrophy and the HG, I have lost what little weight I gained in the very beginning of this pregnancy, plus nearly 30 pounds of pre-baby weight.  I now wear my wedding band on my index finger because my hands have gotten too thin.  At 27 weeks pregnant, I am finally starting to look pregnant, and I couldn't be happier about gaining weight.  

Finally, some maternity pants!

We have prayed for this baby; prayed that she would survive and thrive during my tests and treatments for CIDP, that my failing body would not fail her.  She is a miracle, a beautiful celebration of life, and I want everyone to know she's here!  I want to celebrate every pound, every stretch mark, every beautiful "imperfection" that happens to my body as a result of growing this precious baby.

I am still working on accepting my 'new' body; the one that reminds me I'm not quite healthy every time I look in the mirror.  It's a struggle, friends, but I am trying.  

So until my body more obviously reflects my current state, I will wear stripes, shirts that tell the world I'm so pregnant, and embrace being small.

Do these stripes make me look pregnant? ;)