31. Waiting for Godot 

Борода не делает философом.

A beard doesn't make a philosopher.

Well, as in many things, we wait.  I am still waiting for something I thought was going to be a given for today - CHEMO. But in fact, have not yet had my smaller 'octo-port' installed and have a date to do that in surgery at 3 p.m., and then Dr. F arrived to say tomorrow, Saturday, will be the first day of administering Chemo. So we wait.

Have gone out to walk as far as my legs would go, which is pretty much to the hardware/housewares store, which had nothing I needed other than a bit of leg-stretching walking. Then stopped to pull more from that lucky row of Vegas-like Bankomats in the grocery store. Happy to report, the machine paid out for me each time I played (3 banks, 3 'wins').  STILL lucky!

Since I'm not puking yet and therefore cannot begin to whine much, allow me to blather just a bit.

This photo (below) was taken on the first weekend I was unable to use my legs (Feb, 2011). I'd taken the whole family to Denver for the weekend to enjoy snow, tubing, visit Scott and Amanda and get in our annual weekend of winter.  Here we are setting up a tandem run with all the grandkids (5 at that count), and it was the single tubing 'run' I did at Winter Park. I could barely walk up a step, and only the promise of the electric lift and 3 tall strong sons got me to do this run.   This is sad for me!  We do so much together as a family, and there is so much joy to be had in all the trips and events and 'going' we share. And suddenly, early Feb, 2011, I was losing ability to walk at all - and losing it VERY fast.  I fell twice at the airport, once in the restroom - I had zero deep reflexes, numbness all the way up to my hips - it had been only about 5-6 days since my pinky toes felt slightly numb).

I will admit, my cavalier 'science experiment' interest was gone and I was getting downright scared.  I'm a VERY active traveler, etc.. My life was full.  You wonder what your life is going to be like - what the hell is wrong - if it will ever be okay again. 

When you look at that photo, you probably see a normal family enjoying a normal fun day out together.


This is a point to be made:  There are many things that go on within, unseen, and one of the weirdest things about CIDP or MS, etc., is that it's pretty invisible to the outside viewer.  I look normal (okay, well, I've gained 30 pounds cause I'm unable to be as active as usual). If you met me but knew I had some weird rare autoimmune disease, you would probably think I was full of bull, frankly, because I look pretty much like me.  Which is part of why it's difficult for your friends, neighbors who have autoimmune ailments or disease to get 1. diagnosed quickly and accurately; 2. gain support of their family members and friends; 3. keep from losing a bit of their own sense of self.

Believe me, looks can be deceiving. And it's exhausting to have your immune system ramped up in high gear all the time, too. You might look normal, but your body feels like you're fighting pneumonia or a bad flu - exhausted quickly, sometimes not enough energy in an arm or leg to just lift the damned thing.

And for those of us whose nerves are affected, you might fall down a lot, get clumsy or lose abilities you didn't think you'd miss. I remember how strange it was that I couldn't skip. Told my brother, who has a kind of dry excellent sense of humor, and he simply said, "Well, Susan, no one wants to see a 60-year old woman 'skip' anyway". And of course he's right. But I wanted to know I could if by chance I ran across that rare one someone who begged to see me skip - you know, like a grandchild.

And then someone said something about their paltry broad jump.  You know, I wasn't able to lift a foot to climb a single stair step, and I could walk about 20 steps total, maximum, but something in my head, (which has no clue it's not getting messages to the feet) thought I could certainly jump.  I gave it my Olympic best.  Four inches!  And that was after I'd healed with IVIg for months. And, in fact, it was a best out of 3 jumps, to boot.  I knew I wanted to jump. My brain sent the message to my legs. My feet hadn't a clue there was an issue of distance to be had.  It was laughable but a bit hideous, as well.  I still can't jump.  Comes to an out of control dump truck careening down the road I'm trying to cross - I'm just a splattered bug.

Losing your body's ability to move at your silent command is a tremendous loss. Please don't ever diminish that loss to someone who has MS or CIDP, etc., by simply telling them they just need to try harder, get more exercise, eat right, take this or that vitamin you read about, etc., etc., etc.   Just say, "sorry, that just totally sucks!".  Cause there's really not much else to say.

Well, unless you start saying "HSCT!!!!!!!!"  That is a supportive constructive hopeful and healing thing to say to someone like me.  Give it a try - you never know if/when that next super-rare malady will land on your doorstep, in the lap of your active life.

Okay, that's about enough to say today. Almost time to go get that octo-tube stabbed into my neck.  More later.

Thank you for following. I still do not know how to add a 'follow' gadget. It's truly that I'm too lazy, pretty sure. I have not yet tested to see if those kind of nerve messages can get through, though.  Might cut me a break, say it's CIDP, and just click "BOOKMARK" to follow my blog.  Thanks.  Pass it on!