Grateful for Your love

Yesterday we got almost a foot of snow. Today it was 45 degrees (beach weather!) so this happened...

The first time it snowed this year, I was laying in a hospital bed unable to move. I could barely see the snow from my position in bed, and I remember crying thinking that all I wanted was to play with my son and watch him discover the beauty of winter; a season I cherished when I was young.  It has snowed a few times since that day, but I was still not strong enough to bundle us up and head outside.  Each time I wondered if that was the last snow of the season, if I had missed my chance to make memories with my boy.  But God is so faithful, and hears our cries, no matter how small.  He blessed us with this beautiful day, warm enough that we didn't need hats, but cold enough for a big blanket of soft white snow.

Today, I was strong enough.  It was warm enough.  We are all healthy enough.  Memories were made.

Thank you, God, for the gift of today.

My body is tired, but my heart is so full.

Today…I cried tears of joy.  May God be praised.

"You chase us into the dark and Lord we're grateful, oh we're grateful
You captured our hearts with Your love, oh Lord You're faithful, you are faithful
We're grateful for Your love" - Ellie Holcomb

There have been a lot of tears today. They are tears that I’m sure are exacerbated by pregnancy hormones, but tears just the same. Tears of loss.

I have lost so much of my identity in these last few months, but I am not without hope. I have lost my job, we have lost income, I have lost my independence and sense of adulthood. It is humiliating. It is humbling.

I have accepted the tears much more quickly than accepting help. But if I may have a moment of honesty, I am struggling. And so there are tears.

“You make beautiful things out of the dust. You make beautiful things out of us. You make me new, You are making me new.” -Gungor #CIDP #warrior #givemeJesus #awareness #spoonie #chronicillness

Pain. On of the many symptoms of #CIDP, and one that isn’t talked about. I am one of the fortunate ones who does not spend every moment of every day in pain, but there are still many things I cannot do without pain. I dread simple tasks like getting dressed, or getting in and out of bed. Still, I try to choose joy each day, and remember all the things I am able to do. I am blessed in this suffering; there is beauty that comes from it, goodness that comes from knowing that God sees me and has asked me to be a light in the dark. I pray every day that sharing my story helps just one person. This crazy life is a gift. “Consider it nothing but joy” #choosejoy #CIDP #chronicillness #awareness #spoonie

To the average person, this isn’t much to write about, but for someone with #CIDP its huge. This is the first time since September that I’ve been able to sit on the floor with my legs “crossed”. I won’t be able to get up without help, but being able to get my legs bent this far is such a huge milestone. Thank you to all the physical therapists and doctors that have made this moment possible, cheering me on and believing in me every step of the way. #choosejoy #chronicillness #ChronicInflammatoryDemyelinatingPolyneuropathy #spoonie #warrior

Everyone knows the best fashion accessory is a blood pressure cuff! #choosejoy #chronicillness #CIDP #spoonie

The Future Freaks Me Out

That was one of my favorite songs ten years ago, and the title still holds true.

I’m going to be honest…I genuinely strive each day to choose joy, and remember God’s goodness and how truly blessed I am.  But some days I fall short of that, and fear wins.

There is so little research on CIDP, and for someone like me who really needs knowledge to keep from panicking, well…it’s rough.  The little bit that doctors do know about this disease doesn’t provide much comfort…they know just enough to scare me.  CIDP is rare.  CIDP during pregnancy is almost unheard of.  I have been so fortunate to have “met” a few women online who have gone through this journey, and their willingness to share has been invaluable.  

One of the few things doctors know about CIDP in pregnancy is that relapse is common in the third trimester, or in the weeks following delivery.  Unfortunately, there doesn’t seem to be a treatment plan in place to help prevent this, so I’m left waiting for the other shoe to drop.  I spend my days choosing joy and living in the moment because that is all I have, and I’m so incredibly thankful for these days.  While I am not healthy or normal by general standards, I am much better than I was in the middle of my first flare up.  I like to think of this time as being in a remission of sorts, and I try to spend each day thankful for the ability to move, walk, and hold my son.

But in the back of my mind, I am waiting.  Waiting for the morning I wake up and can’t get out of bed.  

I have been very emotional this pregnancy.  I mean, crying-over-not-having-the-right-snacks-in-the-house, and sobbing hysterics over my 17 month old one day growing up and moving out kind of emotional.  The phrase “you are so pregnant right now” is on repeat in my husband’s vocabulary, and we both laugh at how many feelings I have over everything.  Part of this is, of course, the hormones of pregnancy and carrying a girl.  But I’m starting to think that part of my crazy emotional roller coaster is being simultaneously excited to meet our sweet baby girl this spring, but being terrified of advancing in the pregnancy not knowing how my body will respond.  I’ve told a few friends that I wish I could have a home birth, not because I actually want that experience, but because I’m terrified of being re-admitted to the hospital.  I’m afraid I will check in expecting a 24-48 hour stay, and end up weak and useless in bed for over a month again.  The fear is real, friends.

The days that the fear stops me in my tracks, I allow myself to feel the weight. I let myself cry and grieve for the normal pregnancy and anticipation I long for.  And then I fall to my knees and pray.  Pray like my life depends on it…because it does.  Those prayers are often of few words, because the emotions are so strong that words will not come.  But I know God knows my heart, and I trust He hears my cry.  He is my comforter and my healer.  I trust in His will for my life, even though I do not understand it.  And when I forget to bow down in prayer, and have lost the strength to hope, I have an amazing community of friends that remind me to hold on.  Friends that remind me it’s ok to grieve, it’s ok to cry and get angry.  Friends that remind me I am not alone; that He never leaves me.

I don’t know why, but this is His will for my life.  My God has called me to suffer for His sake, to be striped of many worldly things so I am reminded constantly that I am not in control.  But He has not given me a spirit of fear.  He is with me always.  Each day is a new chance to give Him praise, to fight in His name, and to show the world His unfailing love and power in my weakness.

Day 7/365. Mommy was super tired from our adventures in the snow yesterday. I think you knew, because you have been so sweet all day, snuggling and playing independently. How did I get so blessed to have such a sweet little boy? #mrbigcheeks #choosejoy #CIDP #spoonie #theeverydayproject #365daysoflight

Last year you were too young to care about the snow, but this year I was ready. We’ve been waiting all winter for snow to play in, and today it finally happened. I bundled you up in so many layers you look twice your size and could hardly walk, but I know you were warm. Watching you discover snow made my heart soar. You are my greatest adventure, little boy. I used most of my spoons to take us outside to play, but I’m so glad we have new memories together. #theeverydayproject #mrbigcheeks #spoonie #chronicillness #choosejoy #CIDP

New Year, New Normal

Being home from the hospital has been so wonderful in so many ways.  I am there when my son wakes up in the morning, and when my husband arrives home from work each day.  I am there to fix my family a real dinner (with two boys in the house that’s how we show love!), and to make sure they have clean clothes.  Thanks to my handy shower transfer bench, I’m able to shower and wear real clothes (no more hospital gowns for this girl!).  

Being home has also come with a whole new set of adjustments…I’m in a land of self discovery.  Before getting sick, I never thought twice about things like climbing the stairs, standing at the stove to cook a meal, or making the bed.  These were things I did as a housewife and mother to provide for my family.  

Now, they are things I need to chose between.  Do I make the bed or shower?  Do I cook a real lunch, or a real dinner?  Do I do the laundry, or clean the playroom?  I must choose, because my body will no longer let me do it all.  This is the life of a #spoonie.

The concept of counting spoons, or being a #spoonie was introduced to me as a hashtag on Instagram when I began following other people with CIDP.  I was of course confused, so I did a little research.  The basic idea of The Spoon Theory is this: each person with an autoimmune disease (or any illness really, but for simplicity’s sake…) starts the day holding a certain number of (imaginary) spoons.  Each task that they complete (getting dressed, showering, completing a morning routine like combing your hair and brushing your teeth, fixing a meal, walking up a flight of stairs, etc.) costs them one spoon.  Once their set of spoons is gone for the day, it’s gone.  If they attempt to use a spoon for something once they have spent today’s portion, it will come out of tomorrows set and they will begin tomorrow already short a spoon.  For the full story, read here http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Now that I’m home and trying to live life the way I used to I can safely say that I too and now a Spoonie.  I now start each day with a set of spoons, and can only do that many things.  Once my spoons are gone, I have no choice but to rest, and have others do things for me.  This is particularly difficult when you have a toddler who doesn’t talk yet, and can’t understand why he has to walk himself to his room because Mommy just can’t carry him anymore.

It would be very easy for me to feel sorry for myself, and I do find a good therapeutic cry is sometimes necessary, but as often as I’m able, I choose joy.  I choose to be thankful for this new life, for this opportunity to let others serve me, and to find new ways to serve others.  I have a chance to find new ways to say thank you, new ways to say I love you, and new ways to be the hands and feet of Christ (usually from my bed, the couch, or my desk).

I do not have many resolutions this year…I would love to stay out of the hospital this year (except to welcome our baby girl later this spring), but other than that…

I have been doing a LOT of research about how to keep myself as health as possible, and will be beginning an elimination diet called AIP - it’s the autoimmune protocol for the Paleo diet.  Normally, I hate the idea of changing the way I eat…I love food, and most of the food I love isn’t the healthiest for me.  But when faced with making a lifestyle adjustment in exchange for potential good health…not much contest there.  If changing what I eat keeps me at home with my family, then it’s more than worth any cost or hardship on my part (though I’m pretty sure eating out just got really difficult).  If anyone reading this has heard of/done the AIP diet and has any recommendations, feel free to comment!

So my new normal includes accepting help even when I’m SURE I can do it myself (keep telling yourself that…), taking naps when my son does so I have the strength to make it to dinner time, having a MOUNTAIN of laundry (it’s not just a pile, trust me) when I can only do one load a day, needing to plan ahead when I go upstairs because I won’t have the energy/strength to go back down if I forget something, and having in home therapy (physical and occupational) four days a week.

My new goals include doing a one photo a day 365 project so my camera equipment doesn’t get dusty, learning how to hand-letter, learning how to make all kinds of yummy AIP recopies that 1) won’t put us in the poor house, and 2) can be done in the crockpot, and being OK with not being Supermom/Superwife anymore. Oh, and taking full advantage of using those cool electric carts in stores, and my spiffy handicapped parking sticker!

My body and mind are exhausted.  My heart has never been more full.

Welcome, 2015.

"Please take my life and use it, I’m ready." - The Rocket Summer

New Expectations

Suddenly having your health taken from you really makes you think (often by force…hospitals don’t leave you with much else).  Last week officially marked one month from when this hospital stay journey began, which made me sit and reflect yet again on my new normal.

I’ve learned quite a bit about CIDP since I suspected that was what was wrong (about 2 weeks before my actual diagnosis), and continue to educate myself daily.  One of the slightly scary things about CIDP is that so few doctors really have experience with it, and the prognosis of the illness is so varied from person to person that it’s really impossible to know exactly where I will be in a few months or years.  Some patients go on to make a complete recovery, while others are walker or wheelchair dependent for life.  There is also the real probability of relapse with CIDP (the C stands for chronic), which can be triggered by something simple like over working yourself.  

I don’t say all this to frighten anyone, but more to say that learning all this has forced me to adjust my expectations of what I am now able to do.  Even if I do make a complete recovery and learn to walk without any assistance and can finally pick up my son again (could someone please tell him to stop getting heavier?) :), I will still need to pace myself (doing laundry and going to lunch with a friend is probably too much), really listen to my body, and avoid stressful situations (stress is another relapse trigger).  Here at rehab, they have been very careful in therapy to push my body so it gets stronger, but not push me to the point of overdoing it and causing a relapse.  It’s a fine line.  Avoiding situations that could trigger a relapse of my CIDP has very real implications on how I live my life!  Time for some new expectations, and learning to be ok (and even happy with) my new normal.  The time frame for that potential full recovery is about a year, so I still have quite a ways to go, but I will never stop fighting!  I will be able to independently care for my son someday, I will walk again, and dance in the kitchen again!  I am a FIGHTER wearing the armor of God.

"YOU CAN’T STOP ME!" #116

Today was my first day at the Rehabilitation Hospital, and I am completely exhausted. Even having a conversation is exhausting. But this beautiful tree reminds me of the amazing love of Jesus and the life he gave for us. I love the joyful anticipation that comes with the season of Advent. I may be exhausted, but I know He is giving me strength. #CIDP #chronicillness #fighter #givemeJesus #spoonie

"Let us run with perseverance the race that is set before us." - Hebrews 12:1

So today was the last day of my first round of IVIG treatments.  Overall, treatment so far has been a huge success, though I did not initially see any improvements.  In the last two days I have regained the ability to bend  my legs on my own (though it takes a ridiculous amount of effort still), and with the help of a walker and two physical therapists, I am able to take a few steps!  Today was the first time in weeks that I have been able to stand up and walk.  It was an amazing feeling!  

Tomorrow, I will be discharged and transferred to an inpatient rehab facility.  We’re still not sure exactly which one I’ll be going to, since getting me accepted into a program has been a challenge.  Prayerfully, I will be going to D.C., but we won’t know until tomorrow.  Fingers crossed!

While part of me is excited to begin PT and get my strength back, there is another part of me that is nervous about how difficult re-learning all basic functions is going to be.  I’m ready to put in the work, of course, but I know it;s going to be the biggest challenge I’ve ever faced.

So tonight, I am preparing my heart and mind for the race I have been called to.  Tomorrow, it’s time to hustle.

Two days ago (and for the last month), I was unable to bend my legs or lift my foot off the floor.

Today is treatment day 5/5…just out WALKING in the hallway…no biggie. 😉