In the Light

My mind gravitates towards bright, colorful images; the more light the better.  For years, I lived in emotional darkness that crippled me, but today I choose to live joyfully, in color and light.  Some days that's really, really hard, but nothing will keep me from trying!!

I'm excited to be writing again; I've learned that having a creative outlet (or maybe seven or twelve...) is so. good. for my soul.  Flexing my creative muscles makes me a better wife and mom, and fills my cup.  So i'm writing again, and taking pictures with my real camera again (!!), and singing more (even if it's only to the dirty dishes in the sink).  Life is good.

2016 is the year I will actually complete a 365 (366?) project!  I may not be the best at posting everything each day, but I am actually taking images each day, and that's the important part! Im excited to grow as an artist and document whatever this year decides to throw at us.  I am praying for a much less eventful year, but no matter what, I know God will be with us always!

Cheers to the adventures of 2016; may they be full of love, joy, and light!

On Being Relentless

Relentless, as defined by my good friend Merriam-Webster, is showing or promising no abatement of severity, intensity, strength, or pace.  In simple terms: strength that remains (see also, #cantstopwontstop).  Oh, to be relentless in joy. It's a beautiful thing.

But what about those days when the joy doesn't come?  when the grey clouds of the world drag you down and all you want is everything that isn't?

Those cloudy days have been my BFF lately, and it's tough.  And I'm here, being honest.  And terrified of the transparency of my weakness.  But what would sharing my story mean if it wasn't told with truth?

In the last year I have: 

- actually started feeling the death of my father (he passed away three years ago, but I think I was in shock), 

- nearly lost my mother to a brain aneurysm (surprise!), 

- quickly lost all physical strength and basic function in my body that I'm still working to regain, 

- carried and birthed a beautiful baby girl enduring a very difficult pregnancy full of complications, 

- had the possibility of future healthy (for me) pregnancies all but ripped from my (and my husband's!) fingertips

...and now I'm attempting to make major dietary and lifestyle changes that will hopefully bring healing, but are making me a very difficult person to live with (I like food).

As a result of this last year, I am a disaster mentally.  I struggled with depression and anxiety as a teenager and through college.  I was finally in a great place mentally when this last year happened, so I am struggling once again.  There are too many days that I'm terrified to go to bed (stress-induced nightmares), and too exhausted to get out of bed once the day begins.  I am angry that my body has betrayed me.  I spend most days lately waiting in worry, rather than joyful hope (what if it's not over?).  But there is something I have this time that I didn't have ten years ago; determined strength.

Yes, I am having a rough winter (I know many are thrilled with the warm days, but I am really not a fan of all the rain and gray skies...come on beautiful snow!!).  The introvert in me would like to stay in the house until spring, avoiding all the socializing that happens this time of year.  But then my heart dares to hope, just for a moment.  

What if...it's not over?

If I could go back fifteen years and talk to my teenaged self, I would hug her and say, "Don't give up! Don't ever give up! Those plans you have for your life?  God's plans are so much better, so much greater than you could ever imagine.  Cry, yell, but seek joy.  It can be hard to find, but with God it's never gone. Be relentless; seek joy."

I may be depressed and anxious, but I am also relentless.  I will not give up.  I will seek joy. I will jump on the couch and dance in the kitchen, even (and especially) on cloudy days. 

It's not over.

A Peaceful Home

Joining in with Blessed is She for another link-up!   This week's theme is Peace, and as always, God's timing is perfect.

Having a toddler forces you to take a long, hard look in the mirror every moment of every day.  As a stay at home mom, I've been struggling lately to be the wife and mother I had always envisioned myself becoming.  Insecurity, fear, and anger are robbing me, and my amazing family, of the love, peace, and joy Christ calls us to.  My negative emotions mean there is little room for peace in our home.  It's time to look in the mirror.

I recently came across an article that describes anger as the surface of much deeper issues.  With tears streaming down my face, I realized I need to do some self healing (and possibly...no, definitely, take a nap).  It isn't January 1st, but today is always a good day for a resolution!  Perhaps goals is a better title for this.  #lifegoals?  Alright, moving on...

Things I wish for this holiday season...

To love myself more
To forgive (both myself and others)
To speak, think, and act with love
To choose kindness, always
To choose joy each day
To let my children see the Mom I've always hoped to be
To show the love of Christ to all
To find more time for Jesus, even when I've already found plenty
To bring peace to my heart, and peace to my home

I know, with Christ, I can do these things.  With His help, all things are possible.  He has already changed my heart in so many ways.

I will end with my favorite prayer and song to St. Francis:

Make me a channel of your peace.  
Where there is hatred let me bring your  love.  Where there is injury, your pardon, Lord  And where there's doubt, true faith in you.  

Make me a channel of your peaceWhere there's despair in life, let me bringhope  Where there is darkness, only light  And where there's sadness, ever joy.

Oh, Master grant that I may never seekSo much to be consoled as to console  To be understood as to understand  To be loved as to love with all my soul.

Make me a channel of your peace.
It is in pardoning that we are pardoned,
In giving to all that we receive,
And in dying that we're born to eternal life.

Amen.

 

Grace, not perfection.

I am doing well, all things considered.  I can walk, and play with my babies. I can carry groceries and dance in the kitchen (albeit, awkwardly, but I can't really blame my disease for that one ;))....I even managed to complete a newborn session for a dear friend recently!  Yes, God is a healer, and is so very good!  

A comment I hear often now is "You look great! So you're better now?".  Well, yes, I am doing much better! But no, I am not cured, and will be dealing with my autoimmune disease for the rest of my life.  I just don't want to be the wet blanket at every social gathering forever.  Actually, I'm pretty sure being chronically ill has gained me major cool points!  Or at lease that's what I tell myself. :)

For those wondering, because I am asked often, I still suffer from neuropathy (pins and needles, numbness, and loss of sensation) in my extremities and in my back, and pain in certain areas (my entire face is still very tender: I can't rest my head in my hands, or snuggle into someone's shoulder, for example). Stress makes my symptoms worse, as does being too active, or not active enough. I have become an expert at walking the health tight rope!

Since I still have symptoms that effect my daily life, my last round of treatment put me back in the hospital, and I'd really like to stay out of the hospital for awhile (dream big, people!), I have decided to make some major lifestyle changes to help heal my body.  Enter, the AIP diet!

AIP stands for Auto Immune Protocol, or Auto Immune Paleo, depending on who you talk to.  I still have SO much to learn about it, and the details really aren't the point of this post, but is basically the opposite of the fast/frozen/convenience/carb food diet I've lived on my entire life.  More info on AIP here if you're interested!

When I'm having a good day and plan well, the food is amazing and delicious and I wonder why I haven't always eaten this way.

Most days, I hate the idea of chopping another vegetable, raw meat completely grosses me out, and I wonder why I'm torturing myself and killing our budget with attempting to set the house on fire cook.

Have I mentioned I've never really cooked?  My knife skillz could be replicated by my two year old. 

Enter, grace! NOT perfection.

"I will hold myself to a standard of GRACE, not perfection." - Emily Ley

Rinse and repeat.

Diets are not just for weight loss.  I am trying to save my life.  I am trying to add years to my living.  I am trying to make sure I'm there to sob hysterically at my children's weddings (God willing, of course).  I am trying desperately to stay out of the hospital.  

I'm also trying to forgive myself for the many times I fail and indulge in a now forbidden food.  Baby steps.  And perseverance. And grace upon grace.

BIS Sisterhood | Living Faith

It's that time again!!  I am SO excited to be joining back into the #BISsisterhood link-up with Blessed is She!   If you're a Catholic woman looking for an awesome community of sisters in Christ, check them out!  You can even get daily devotions right to your inbox each morning...life saver for this mama!

This week's topic is "Living Faith", which made me both excited and nervous.

"Faith is meant to be LIVED! How are you living it out today?"

Well, gosh...I spent all afternoon washing the dishes without complaining, does that count?

In all honesty though, I stole an idea heard on an episode of the Building Bridges podcast (seriously, those ladies rock; you should  have them over for digital coffee), and I try to make each part of my day a prayer.

Sometimes the prayer is a simple "thank you, God for this beautiful weather", sometimes it's a Hail Mary said as I load dishes into the washer, or try to match yet another pair of socks...and sometimes it's me face to the floor (or to the sky, depending on the day) saying "God. Help."

A more recent addition to living my faith is something so simple, I used to take it for granted.

I make plans.

A little over a year ago, I wouldn't have thought twice about making plans; of course I could go to that get together!  A concert? Sounds great!  But when my world was rocked with a life-long illness, I froze in my tracks.  Thinking about the next five minutes terrified me, never mind next week.  Would I feel well enough to attend that party?  Could I actually simon the strength to bring a dish, or help out?  Or my worst fear, would I even be home? Would I be in the hospital again?

These are questions that still pop into my head when anyone asks me to show up somewhere more than an hour from when they ask, but I am no longer paralyzed in fear.  Looking back on my life and seeing all the situations where God showed up and blew all my insecurities right out of the water...how could I not believe He would show up again?  I know He will, so I say yes to plans.  I say yes to my future, because I have complete faith in His perfect will for my life.

Play dates, kitchen dance sessions, and throwing joy around like confetti.  This is my living faith; my heart is full.

One Year

Yesterday marks one year.  365 days from when my first symptoms began and changed my life forever.  It's very bittersweet.

These last 365 days have been some of the most terrifying, exhausting, heartbreaking days I've ever known.  They have also been some of the most beautiful, and I am humbled that God chose me to walk this journey as part of my story.  

I have been changed in a most extraordinary of ways, and have never felt Christ's presence more than I do now.

Today, as I watch the leaves begin to change, I will continue to fight.  To choose joy, even when I want to cry out in fear.  To choose love, because each day I have with my family truly is a gift.  

On the days when I am spent, when the toddler listens "with his nose" as we say and the baby won't settle, I will thank God for being healthy enough to be home with and caring for my babies.  I will remember all those nights in the hospital spent crying and wishing for the strength to hold my son...and I will choose joy.

At the end of the week when I have reached the end of my rope, I will greet my husband with a smile and a kiss, because there were so many nights I longed just to see his face, or receive a hug without flinching in pain.

When I don't want to go downstairs to get something because I just came from there, I will choose joy, and remember that only a few months ago I could not even roll in bed, let alone walk.

When I unload the dishwasher, or complete any other household task that I used to dread, I will praise God for healing and strength, because I celebrated the day I could lift a small plate.

I see now more than ever how blessed I am in this life, and I intend to cherish as much of it as I can.  There are still difficult days...days that leave me wondering if I am at the beginning of a relapse, or if I will someday lose the strength I have worked o hard for months to gain back.  But on those days I try very hard to remember just how far I have come this year...just how far God has brought me, and how He continues to show up in my life over and over again.  

Trusting Him with my life over and over again...I consider it nothing but joy.

"…And so we wait in joyful hope"

This summer has been one of such joy!  Simple days full of family and friends, both near and far.  New experiences and new appreciation for re-learned skills.  We're working on jumping (like an inch) in PT now!  Watch out, bounce houses…I'm coming for you! ;)

Our sweet girl is growing beautifully, smiling and cooing, and the little mister is going to be TWO in less than 10 days!  God is so, so good.  

After to many phone calls and a few backflips through red tape, I will be starting another round of IVIG tomorrow morning (yesterday, I started writing this a few nights ago).  As nervous as I am (why do I still get nervous?), I am also excited because this round of treatment will be done from the comfort of my own couch!  Praise God for home care!!  Instead of spending the week lonely, I will be having "coffee dates" with amazing friends who have offered to be my hands and feet this week while I'm attached to an IV.  I am so beyond humbled every time I sit and think about the angels God has placed in my life.  There are no words…you are each more of a blessing than I could ever possibly explain.  Thank you is simply inadequate.

Attending Mass with a newborn is a funny thing.  Just when I think we have prepared perfectly (the baby is fed, the toddler is in the nursery, we actually remembered the checkbook for the offering and our clothes are clean), little miss proves me wrong.  Between feedings, diaper changes, and where is that pacifier again, I'm not sure I have actually heard the homily in over a month.  As a result, I have been trying to really meditate on the phrases that I do hear.  

"…and so we await with joyful hope the coming of our savior Jesus Christ."

What a beautiful reminder.  Waiting with joyful hope…not anxiety or fear...sadness or doubt, but hope…joyfully.  

Living each day with hope, knowing that this world is not our home, that He has something more beautiful than we could ever realize waiting for us.  Even in the midst of suffering and pain, I take comfort this hope for a future with Him.  Consider this life nothing but joy, dear friends.  For God's desire is not a perfect life on this earth, but perfect peace resting in His will.

Flashbacks and Better Days

This last week was filled to the brim with family togetherness and "festivities" as I like to call them.  Last weekend, our beautiful girl Abby was baptized and welcomed into the Catholic Church!  My mom, sister, her husband, my sister-in-law, and all their children traveled to MD from all over the east coast to witness the glorious occasion and meet E and A for the first time!  It was so wonderful, having the whole family together.  The last time this happened was at our wedding nearly four years ago!  The day before the baptism was spent walking around DC and playing tourist…something I never thought I'd have the strength for again.  The last day my mom was in town we went shopping for the entire day, which is another thing I never thought I would do (at least not without a wheelchair) after my diagnosis.  Praise God for better days!!

This weekend, I bought new shoelaces for my sneakers, and almost cried in the shoe aisle at Target.  The laces currently in my shoes are elastic, and were put there by my Occupational Therapist so I could put on my own shoes.  On really good days, I sometimes forget that a few months ago I couldn't even tie my own shoes (and it wasn't because of my big pregnant belly).  Today, I can not only put on my shoes without assistive equipment…I have the hand strength to tie them, too!

I still have flashbacks…little reminders of what I lost, what I could and couldn't do…and I am humbled.  I am humbled and amazed that six months ago I couldn't dress myself, couldn't walk without a rollator (a cool walker with wheels), and could only climb the stairs in our house if I held onto the hand rail and moved at a snails pace.  My blood pressure was so low that I was often one movement away from blacking out, and I struggled to brush my hair because my arms weren't strong enough.

But God.

Today, those flashbacks are reminders to choose joy, and savor every moment…even the hard ones, because they are a gift.  Every day I can wake up and care for myself and my family is a gift, and I want to spend every moment God has given me to praise and thank HIm for this life.  

Please take my life and use it, God.

Celebrating New Beginnings

Whew!  It has been TOO long, friends!!  The last few weeks of pregnancy kicked. my. butt. I was sure I would wake up one morning (if I fell asleep at all) to my body packing it's suitcase and heading for the tropics.  But, we made it!!  On May 23rd our lives changed forever…Miss A. Rose was born!!

I was blessed to be healthy enough for a natural, medication free labor and delivery.  It was a beautiful sunny day when little lady made her appearance, and I was able to spend the majority of my labor at home walking outside.  I'll write her full birth story some other time, but it was perfect.

The reason I have waited so long to blog about her arrival is that I wasn't sure how I would recover physically.  Miss A. is now 3 weeks old and I am, so far, relapse free!!  One of my biggest fears was not being able to come home with her right away, and I feel so fortunate to have been able to do that.  Recovery has been the normal wear and tear that happens after a woman gives birth, but my CIDP has remain unchanged from my last round of IVIG in March.  I still have symptoms that effect me, mainly muscle pain  and weakness, but I will be returning to physical therapy as soon as I am cleared by my OB.  I've actually kind of missed it!  The combination of IVIG and PT together have been crucial in my recovery and improvement.  I am still not as strong as I was pre-CIDP, but I am much stronger since my diagnosis.  I'm hoping to regain enough strength to run around with my little guy (who will somehow be TWO this summer).

Our coffee cups are empty, but our hearts are so, so full.  It is well.

Remission and Relapse

One of the things I try to accomplish with this blog is awareness/education.  Since being diagnosed with CIDP I've been presented with a unending list of questions (from my own head, from doctors, from friends and family).  It's funny, usually having a diagnosis brings answers, but this diagnosis is so rare that it seems to have brought more questions and confusion than anything else!  The beauty in this is that we all get to learn together, and maybe teach each other along the way!  I was sent home from the first hospital that I was admitted to because they simply didn't recognize my disease and couldn't figure out what was wrong.  If spreading awareness about CIDP helps even one person avoid that terrible situation, then it's more than worth the effort.

After completing my second "loading dose" (a five day high-dose treatment) of IVIG, many have asked  not only how I'm doing, but 'what's next'.  "So, are you in remission now? You seem like you're better!" has become a familiar conversation.  

The short answer is, firstly, thank you!  I am certainly doing much better than I was during my long hospital stay.  I am able to walk, function independently, and care for my son; God has been so good!  Second, no, I am not in remission.  I am still being actively treated for my CIDP.  IVIG is a slow moving treatment that continues to work for weeks or months after the initial dose, meaning that it's still treating me at this moment, even though there is no IV in my arm.  I make a conscious effort each day to get dressed in real clothes and attempt to fix my hair.  As my dear friend would say, just because I am sick doesn't mean I can't look fabulous!

"Whenever you fast, do not put on a gloomy face as the hypocrites do, for they neglect their appearance so that they will be noticed by men when they are fasting. Truly I say to you, they have their reward in full.  But you, when you fast, anoint your head and wash your face so that your fasting will not be noticed by men, but by your Father who is in secret; and your Father who sees what is done in secret will reward you." - Matthew 6:16-18

Whether remission exists for CIDP patients is dependent on who you ask.  Some will say no, that remission with CIDP is not possible.  Others say that if you have gone 1 year without any treatments you are considered to be in remission. In the spirit of hope, I will go with the second opinion and consider myself in remission when I have not needed any treatments for 12 months.  Right now, we're a long way off from that, so I will continue to fight!

The other R word with this disease is relapse.  As I've written about before, there is a very real possibility that I will relapse after this sweet girl is born.  My doctors are doing everything they can to prevent it, but ultimately it's up to my body and totally out of my control.  A relapse could mean many things; it could be as simple as starting to feel the same symptoms I had before (returning muscle weakness and pain, numbness and tingling, etc.), or as complicated as sudden severe weakness that lands me in the hospital again unable to care for myself or my sweet babies.  In talking with other mamas who were pregnant with CIDP (there's a small army of us out there!), every body is different, and each of their experiences was different.  So we really have no idea what my relapse (if it happens at all) will be like.  The most we can do is prepare for the worst, and pray for the best.  My greatest desire at this point is simply to go home with my new baby, and not need to stay in the hospital alone past her discharge.  That would truly break my heart, but I know God will give me the grace to handle it if that is what He requires of me.

So, to recap: No, I am not in remission, and I may never be.  We are unsure of how long I have before a relapse…could be weeks, months, or (God-willing) years from now.  We are preparing for the worst, but continue to pray for the best!  I hope this helps shed some light on my current situation; please feel free to reach out and ask me any other questions!  Comment below, or drop me a note by contacting me above…I would love to hear from you!

Today is a good day, and I will continue to fight and choose joy!

"You make me brave, You make me brave

You call me out beyond the shore into the waves

You make me brave, You make me brave

No fear can hinder now the love that made a way" - Bethel Music

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? ;)