Day +56: where did 60 days go?

Days I've been back home:45

It blows my mind a that its been almost two months since transplant.

Latest Symptoms/Status:
Not much to report over the last week. Still riding the roller coaster, definition: good days and tough days. Lots of joint and muscle stiffness and pain this week. The right hand and foot are still difficult to control. If I had a type correction tracker on this post it would require a typing class I am sure. :)

While nerve pain is still present, I am gaining stamina. Meaning, I can stand/walk for longer duration over this last week. Depending on the activity I might have an extra 5-10 min. on my feet in a day, which doesn't seem like a lot.  But to someone with nerve pain, it's monumental.

Noticed beau lines in my nails (white lines across nail beds). This is caused by chemo toxicity in the nail-bed. Pretty common post chemo.. they will grow out with my nails and eventually fade

I heart Skype
I am really enjoying my Skype conversations with friends across the country (and even in other countries - Australia and England in the books)! If you have a Skype account, lets schedule a chat!

Weekly highlight

My new wig. I invested in real hair wigs, which don't fit quite right and I can't seem to style to look un-wig like. I get this bright blue synthetic one and it fits like a glove. I even had several comments from strangers about how good it looks. Random!!

real hair wig

Synthetic blue 

I will let you be the judge of which is better. I actually want to hear feedback about the blond one....I am not a fan.

I did pay a hefty price for taking the wig trip and doing a bit of walking that day. We walked 1.7 mi. versus the typical 1.1 mi. in the neighborhood. It's hard for us with CIDP, GBS, MS and the like to explain the fatigue that can hit after such a simple adventure. Its debilitating.





Fatigue is a stupid-meany -head and I don't like it

I did pay a hefty price for taking the wig trip and doing a bit of walking that day. We walked 1.7 mi. versus the typical 1.1 mi. in the neighborhood. It's hard for us with CIDP, GBS, MS and the like to explain the fatigue that can hit after such a simple adventure. Its debilitating.

Another transplant vet and friend and i were discussing the difficulty of explaining to friends/family that one day you have loads of energy and low pain and the next you can hardly function. We also discussed fatigue and our "limits" in a day. Someone posted this spoon analogy the other day in our support group, I thought I would share. If the range is from 6-12 spoons of energy a day, you see how that is gobbled up quickly.

My Noggin
The hair is growing in, and fast! I look like a baby ostrich, and I'm okay with that.

I do wish I could bring back the Mohawk. It was a one time experience.......memories....I see where my love for blue hair came from. :)

Perhaps next week there will be more updates. My nuero-specializing outpatient Physical Therapy got approved today, so I will schedule that ASAP (I hope to start next week). I'm sure it will be challenging at best, but much needed.

Have a great week!