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

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

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

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

Reunited and it feels so good!!! 💕💕😃😃 #mrbigcheeks #mywholeheart #theeverydayproject #CIDP #warrior

My nails are ready for Christmas!! I can’t wait to see my boys tomorrow morning!!! 💕💕🎄😄 #theeverydayproject #CIDP #youcantstopme #warrior #glitter #nails #choosejoy

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

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

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

The high schoolers at my parish are the sweetest!! Look at all these amazing happy cards and crafts! I love happy mail! Thank you so much @caite.shea and friends!! #CIDP #warrior #choosejoy

NRH Christmas party with Vic the mascot, and my awesome roomie Hallie! We are warriors! #chronicillness #choosejoy #warrior

Pink is my power color. @reachrecords is my warrior music. All I need is #116. #CIDP #warrior #chronicillness #youcantstopme

My blood pressure refuses to behave itself, so instead of going to PT today, I am spending extra time with Mary. How can I pray for you today, friends? #CIDP #chronicillness #catholic #warrior #choosejoy