"…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.