Everyone knows the best fashion accessory is a blood pressure cuff! #choosejoy #chronicillness #CIDP #spoonie
Saturday, January 31, 2015
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.
Lost and Found
A few years ago, I participated in a drama piece with the amazing church I was then attending. It was simple…people were asked, in two words, to describe their lives before and after Christ. We were then asked to write the words on a poster, one word on each side. We gathered together and one at a time, stood on stage to share our words…our story, with the church.
I was placed last in line. Holding my poster and sharing my story, I wept in front of everyone.
"lost".
"found".
Those words are my story, even today.
It’s funny, most days I feel both lost and found. Lost in a sea of medical terms and tests, fear of the unknown and depression from the known…but found in His embrace and love, found in a peace that I can’t possibly understand, found in hope for the future and joy everlasting.
"May the God of hope fill you with all joy and peace in believing, so that you’ll abound in hope by the power of the Holy Spirit." - Romans 15:3
Thursday, January 29, 2015
Tuesday, January 27, 2015
One of the things they tell you is that often with a life changing diagnosis, you will go through the five stages of grief. As prepared as I think I am for this reality, I never am. Having your body completely betray you day after day is so difficult. Making the decision to #choosejoy is never easy, and fighting for a normal life every hour is exhausting.
Holding onto my faith today knowing He is with me.
“You make beautiful things out of the dust.” - Gungor #chronicillness #CIDP #ChronicInflammatoryDemyelinatingPolyneuropathy #remarkablyrare #warrior
Friday, January 23, 2015
"Growing getting better you’re not the person they see
Can’t be mad at the things you been through cause they built your muscle
Now you’re stronger than you’ve ever been they can’t stop your hustle
Your faith ain’t never small that’s what brought you this far
See you got your dreams and you got your prayers and you got your God He gone take you there
See everybody has a season and I believe this one’s yours
Cause you been workin, waitin, this what you been prayin for
Go get it, go get it, Go get your blessing”
Thursday, January 22, 2015
Our very first picture of our sweet baby girl. Only 8 weeks, but already a fighter with a strong heartbeat and dance moves. This is life. Every life is a gift. Marching in spirit with thousands today in DC. #iStand4Life #whywemarch #marchforlife
I am 22 weeks pregnant today! I was extremely sick for the first 19 weeks of this pregnancy (I couldn’t even eat plain Cheerios). Thanks to three different anti-nausea medications, I am able to enjoy food most days now. I will celebrate today by eating this out of the jar with a spoon. 🍴💕😋#imsopregnant #boltonsbecomefour #choosejoy
Thursday, January 15, 2015
Happy mail today!! I fell in love with @remarkablyrare from the first moment I found them and read their story. Those of us with a rare disease and the friends and family who care for us are so beautiful and strong! We celebrate that we are fighters and #remarkablyrare!! #fighter #CIDP #chronicillness #choosejoy #ChronicInflammatoryDemyelinatingPolyneuropathy
Day 15/365 - today we are celebrating another small victory! Eli and I managed to go on a ten minute walk outside all by ourselves!! It does t seem like much, but after being unable to even roll over in bed, I realize I have come a long way. Today and every day, may God be praised. #choosejoy #CIDP #chronicillness #theeverydayproject #365daysoflight #mrbigcheeks
Tuesday, January 13, 2015
Monday, January 12, 2015
Not feeling so great today, but I still have #joy because I got to try out the “Hot Tator” that my mom got me! Cooks potatoes beautifully in the microwave, so I’m having a sweet potato and stuffing for lunch! #choosejoy #chronicillness #CIDP #projectblessed
Sunday, January 11, 2015
Friday, January 9, 2015
One of the frightening things about CIDP is not knowing how I will feel on any given day. Some mornings, I wake up and wonder if I will have the energy to care for myself or Eli. But then I remind myself that God is in control, that I can do all things with Him, and that he’s told me time and time again not to worry. So today, I will drink my tea, meditate on His truth, and carry on. #CIDP #chronicillness #choosejoy #365daysoflight #theeverydayproject
Thursday, January 8, 2015
Oh. My. Gosh.
Vera Bradley makes BABY CLOTHES (in amazingly cute packaging)!! I also have the BEST roommate from rehab (@hallie4rose) EVER!! God knew exactly what He was doing when he put us in the same hospital room. This little girl already has nicer clothes than I do! #boltonsbecomefour #theeverydayproject
Wednesday, January 7, 2015
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
Tuesday, January 6, 2015
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
Sunday, January 4, 2015
The first verse from one of today’s readings really spoke to my heart. In the months leading up to my hospitalization and diagnosis, God placed an intense desire for Him and His word in my heart. I really don’t know where to begin with His #writtenword but I believe God will meet me right where I am and show himself to me. Upon reading this first verse, I broke into the song “rise and shine and give God the glory”, and was also reminded of the way my mother would greet me each morning with the phrase rise and shine (even if I didn’t want to hear it). Oh, how He loves us! #projectblessed #blessedisshe
Saturday, January 3, 2015
There have not been nearly enough baby bump pictures this time. Sweet girl, you and I have already had such an incredible journey together. I’m so glad you were there with me through all the scary hospital procedures and unknowns. You and Jesus make me brave. 19 weeks and the smallest bump. #theeverydayproject #boltonsbecomefour
Friday, January 2, 2015
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
Day 1/365 - For awhile there I thought we were done with teething…ha. You are currently getting about 4 teeth at once, so everything is for chomping once again. Have I mentioned how much I love your cheeks? ‘Cause I really, really do. #mrbigcheeks #365daysoflight #notiphone
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