Making the bed (especially our California king beast) takes a lot out of me now thanks to my new buddy #cidp. Celebrating this #smallvictory by showing off our beautiful new setup! Feeling very #homegoodshappy with our Mr. & Mrs. Pillow! It used to live in my office, but I love the way it looks in our room with our awesome #IKEA pillows! Color makes my heart so happy. 😊 #choosejoy #chronicillness #awareness #invisibleillness
Words cannot adequately express how very humbled and grateful we are for the generosity of our friends today. You are truly the hands and feet of Christ and Thomas, Eli, and I are blessed to know you. Thank you from the bottom of our hearts for all of your amazing hard work; our house is finally a home (and we can finally see the floor)!! I will now return to the pregnant tradition of crying happy tears in awe of the amazing people in my life. Thank you all!!! #humbled #choosejoy #CIDP #chronicillness #theeverydayproject
Today was our first day on our own since Mommy came back from the hospital. We’ve been having a great day! I missed doing all these little things with you. My favorite part of being home with you now is watching all that you’re learning; you are so smart, sweet boy!! It’s Christmas Eve and I can’t wait to watch you tonight at mass…this is one of the most beautiful and joyous of the year! #theeverydayproject #thrivewhereistand #choosejoy #invisibleillness
We moved in the middle of my hospitalization (don’t ever do that if you can help it), so our house is still in boxes, but I knew if I made it home for Christmas that we would be putting up our tree. We were only able to take it out and “fluff” it before we were too tired to continue, but I’m thrilled either way. Maybe it will have lights by Christmas Day! #mrbigcheeks #theeverydayproject #latergram #choosejoy #CIDP
Being hospitalized for over a month results in great joy from small events. One of my biggest goals while in the rehabilitation hospital was regaining enough strength to hold my son. I can’t hold him for very long, but it feels so good to have him in my arms again…my heart is full! #mrbigcheeks #theeverydayproject #CIDP #chronicillness #invisibleillness #choosejoy
I’m about to blow up your news feed with events since I’ve been home…sorry about that. 😊
I have always wanted to try one of these things, and now I finally have a reason! Choosing joy with my zippy cart at the grocery store. #CIDP #chronicillness #choosejoy #theeverydayproject #latergram #mrbigcheeks
First full day and my biggest lesson is pacing myself. I am still having a pretty difficult time accepting that I can’t do anything the way I used to. My mind is so willing, but my body is so weak. I know it will get better, and I will wait with joyful hope. Time for a good nights rest and a fresh start tomorrow! #warrior #CIDP #chronicillness #theeverydayproject
"I’m coming home, coming home, tell the world I’m coming home…"
"I’ll be hooome for Christmas!!!" 🎶🎄❄️💕
Tomorrow’s the day!!! I’m leaving with a walker and a lot more work to do, but I get to do it surrounded with the people that mean the most to me. It’s been real, rehab. 🏥
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
Nighttime is always the most lonely here in the hospital, but after a trip downstairs to the Christmas tree, and some time alone to sing to my God, I am feeling the joy of the spirit again. Today, I am joyful and triumphant. #bestofover #advent #warrior #CIDP #choosejoy
I am going to miss this girl SO much after she goes home tomorrow!! We are convinced someone cheated when they put us together; we have so much in common it’s scary. Roomies and new amazing friends; so blessed to know you @hallie4rose!! #warriors #theeverydayproject
Visits are my favorite! My heart jumps every time you come through that hospital door, little boy. You and your daddy are my entire world. #mywholeheart #mrbigcheeks #theeverydayproject #happymama #CIDP #chronicillness #warrior
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
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.
Words cannot express how thankful I am to have such an amazing family. With my new (super awesome, remote controlled LED candles) advent wreath, I am now able to fully participate in the joyful anticipation of this blessed season of Advent while in the hospital. My heart is happy and full! #theeverydayproject #thrivewhereistand #advent #catholic #CIDP
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
The bible reminds us time and time again to hope. Hope continually, hope in His word, never lose hope.
Hope can be so difficult to hold on to when life takes a crazy turn, but I know that God will use my new life with CIDP for His glory. So I will wait with joyful hope for the coming of our Savior, Jesus Christ.
