"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”

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

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 a tough day. The hospital is a very lonely place, and CIDP is a pretty frightening diagnosis. But in the midst of all the crazy, I get to spend a little time with the men that hold my heart and keep me going. If you see them, give them a hug for me…they are warriors, too!! #CIDP #chronicillness #mrbigcheeks #mywholeheart #fighter

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

First time riding in an ambulance! We hospital patients get transferred in style. Look out DC…I’m coming for you. #youcantstopme #fighter #CIDP

Check it out…I’m wearing normal clothes!! I feel human again!! I also made my awesome nurses a thank you card with crayons…coloring makes me happy. Goodbye hospital, hello in-patient rehab! #CIDP #fighter #chronicillness #theeverydayproject #youcantstopme

"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. 😉

commit2pray:

Embrace conflict through #prayer. You will strengthened for the journey. 💪

I love this! “…the scenes we want to skip produce the endings we all love to see.”

Today marks two weeks of being at this hospital, and 2 1/2 weeks of generally being hospitalized. Today, I am thankful for all the amazing nurses and techs who make it possible for me to shower and feel like a human. There is a special place in heaven for these people…they are amazing. #theeverydayproject #CIDP #fighter

I think I may have a new hobby…God is using my time in the hospital for His glory! I can’t wait to fill the halls in the new house with more of His word.

The fruit of the Spirit - Galatians 5:22-23

Made this print last night while in the hospital.  I can’t wait to hang it on my wall at home!

"My brothers and sisters, whenever you face trials of any kind, consider it nothing but joy, because you know that the testing of your faith produces endurance." - James 1:2-3

Oh, hey there treatment. I’ve been waiting for you. Day 1/5…let’s do this. #CIDP #IVIG #fighter #theeverydayproject