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