60. An Otherwise Bad Hair Day - 4.5 Months Post-HSCT and Healthy!
Бу́дет и на на́шей у́лице пра́здник.
There will be our turn to triumph.
I'm going to be uncharacteristically brief. I meant to do this celebratory update at the 4-month point, but I was busy traveling and enjoying a vacation with my husband. Awesome, huh! ; )
Let's get this part out of the way right up front:
I have one predictable but negative issue to mention: joint aches and pain. I have read enough blogs and stories & posts from other post-HSCT patients who also mention a bit of an uptick in this pain in the months after their HSCT and know that it is a predictable post-chemo condition that hits after the effects of the post-HSCT steroids have worn off (that period some call their steroid honeymoon). I'm not worried by it, but I am finding it a bit bothersome and, well - pain hurts. Worst in my joints of fingers and in my hips, I think, but it shows up here and there. Okay, that is my one complaint to lodge - and I know it will self-resolve in the upcoming months.
I know Caravaggio's Medusa (which hangs in the Ufizzi in Florence, and which "no flash" quick photo of which was clicked by me, shown here) might be the ultimate image of a truly bad hair day, and yet what for me might otherwise represent my very worst hair days ever (below) are shown with pride.
At just 4.5 months post-HSCT, I actually have some. And it's almost all dark! YAY! Go, hair!
No, wait - let's get right in there and see what I've got going - all sticking up on top, swirling like a newborn in back and growing up at the hairline, at least it is actual hair and it's mine - all mine. WOOHOO! I'm no longer a baldie.
Okay, so I can't take a selfie to save me. But you get the idea. I'll be trotting off to my hairdresser soon to get started on the 'growing it out' series of haircuts, measured off in millimeters. Meanwhile, sans Caravaggio, Medusa me!
But now for the good stuff:
- I feel great! AMAZING, huh, for someone who went through chemo and bone marrow transplant only recently.
- NO NEW NERVE DEMYELINATION. No side comment necessary
- I no longer have CIDP! Wow, huh! THIS PART IS ALMOST A MIRACLE except we all know HSCT is the only way to get rid of it.
- I have tons of energy - none of that sluggish exhaustion stuff CIDP is known for THIS PART IS TOTALLY AWESOME!!!
- I have no side effects from Rx because I'm not taking anything other than 0-1 Tramadol for old nerve damage pain. THIS PART IS HUGE!
And that's not all. Look! @) @
I've been doing light renovating and heavy redecorating to my old stone house, spent a month away from home to do so - didn't get sick at all and had energy to spare. I'm doing SO well it's thrilling! And the 170-year old 2-story limestone house with 20" thick walls is coming along, too. We're both built to last and we're tough!
I want you to know I painted those ceilings and walls - me, the one who USED to have CIDP! Planned and purchased all the furnishings, put them all in place (with some initial help from my strong son). I would never have had the energy to even consider doing this pre-HSCT. Those of you who have a chronic autoimmune illness can fully understand how monumental this is. AND I worked my business while away, too. Wow, huh! Normal sleeping hours, no meds or side-effects. Doing things I always loved to do before CIDP side-railed me.
So, I just wanted to stop in and tell you who are still thinking over whether you can go through chemo or who are a bit afraid of all that, or who are still bemoaning the loss of your former healthy life and listening to your Neuros. . . HSCT not only works, it's not horrible to get through. Your hair grows back. Your energy and healthy life count for far more.
For those who have just found this blog, written by this happy post-HSCT and ex-CIDP person, you will want to drop back and read my journey to wellness. I think the most valuable post is #50, meant to help you understand how HSCT works and why you aren't going to get better until you finally get it done.