Busy, Busy, Busy (Day +416)

Things are eventful here.  Life doesn't slow down and I've thankfully been able to keep up!

We've fixed our deck, helped my brother roof his house, taken the boys swimming...none of this would have been possible before my transplant.

Life is constantly moving.  

I still can't feel my toes.

I still have pins and needles on my feet.

I still have numbness that sometimes hurts.

Did HSCT work?  YES!

The goal of HSCT was to stop the progression of my CIDP.  Any improvement that patients experience after the transplant is considered a bonus.  

Thankfully, I have experienced a ton of improvements.  

-the constant electrifying feeling is gone.

-muscle weakness is gone.

-debilitating fatigue is gone.

-I no longer take any medications related to my CIDP or HSCT.

-intimacy has improved.  This was an area of life that I hadn't realized had changed from being sick from CIDP. 

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Thoughts:

We are in the throws of school prep here. Our oldest son, is going to kindergarten in a few weeks.  While most moms experience some feelings about their kids going to school, I've had some different emotions.  

-all that I missed out on in his life.  You see, I got CIDP soon after he was born.  When most new moms are dealing with curious crawlers and sleep deprivation, I was dealing with worries of why my legs weren't working, why I suddenly wasn't able to hold my son standing up, why my toes and feet were going numb.  The week before his 1st birthday, I had my first IVIG infusion in the hospital that lasted 5 days and made me soooo very sick.  His entire life has been mommy leaving, mommy throwing up, mommy not able to play.  I've missed so much and while I know sending him off to school is what he needs, I'm more than sad about all I missed.  And all at the same time, thankful for all the love my family and friends have shown him over the years.  When I couldn't be mom, he had grandparents, aunts, uncles and friends who cared and loved him.

With all of that, I'm trying to live presently.  Trying to be a better mom.  Trying to make new and fun memories with him that will show him that I'm well.

Here's to 2016-2017, a year of new experiences.