I've been busy. Working more, taking care of the boys, and working on our house are the things that have consumed my time.
We've decided to sell our home of 9 years and move somewhere that has a great backyard for our boys.
Before HSCT, this dream was just that, a dream. It was beyond possible with my treatment schedule.
Things I've realized in this process:
-when you're sick all the time, you don't have energy to go through stuff. We accumulated 5 years worth of stuff in our basement that we are finally able to deal with.
-when you're sick all the time, you don't have energy to do simple repairs and maintenance. We had let a lot of little things that needed fixed that we didn't have the energy or capacity to deal with. Those little things add up over time.
-I had way too many sick clothes. You know what I'm talking about. Those grungy, around the house, baggy, hole filled comfy clothes. Half of my wardrobe consisted of these clothes. I quickly realized, I didn't need so many sick clothes anymore and got rid of over half!
Thoughts on life:
-I've been living like a sick person for the entirety of my children's lives. They've never known me, not sick. Changing this view has taken time and lots of conversations. We are finally to a point where my oldest son isn't asking all the time where my nurse is or if I'm still sick.
-The damage that my CIDP caused was not just to me and my body. It effected my entire family. The freedom we are all experiencing from the openness in our calendars has been amazing. Not having the burden of IVIG and then the sick week recovery is something I won't take for granted.
We are so excited about getting a home that's better for the boys and what they need. It's no longer always about me but about them and their futures. I love that!
Onward and upward! Post 9 months is feeling great!
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Overall symptoms:
The only CIDP symptom I still have is slight numbness in my toes and fingers.
THAT'S IT!!!
The muscle weakness is gone.
The electricity feeling is gone.
The chronic fatigue is gone.
I'm amazed by my new body and the new things I can do.
I did get a sinus infection that knocked me on my butt for a week but antibiotics cleared it up and I'm all back to normal.
Our boys celebrated their birthdays in the last month and we had a great time decorating and making memories.
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