CIDP And Me - You Take The Good, You Take The Bad

Let me start by stating, for the record, that CIDP sucks. I do not like it and wish it would go away. I have had a rough few weeks. That said, it is certainly not all bad and I have a lot to be happy about. My mobility continues to improve and, at the end of the day, the more easily I can walk, the better. Independent walking (or walking with minimal aid) is the goal after all and I continue to get closer to it.

Not to be too happy-clappy, let me elaborate a bit on the rough stuff. My last post mentioned my first allergic reaction to IVIG. Unfortunately, that was not a one-off blip, as I had my third reaction in as many treatment weeks today. I will spare the details but assure you that I am fine and have the best nursing staff and neurologist on the case, not to mention the most supportive husband around. I left today with a new regimen and schedule that will hopefully work out and nip this in the bud. I am tired of the hippy hippy shakes and looking like a 'smurf' (as my nurses so poetically put it).

OK, happy clappy time, wherein I get a little preachy about the great outdoors... I managed to step onto the deck this past weekend! This is where the pic was taken. I am looking forward to spending a lot of time out there once the weather warms up a bit. I cannot stress how important it is for me to get outside whenever I can (and I recommend you do too). Whenever I am feeling down I try to get out for a breath of air and it is amazing how quickly my spirits lift. Friends of mine took me down the road for a dog walk following a really rough week recently and it was so uplifting! I wheeled myself one way with my friend there to push me off the road when traffic came along. She also wheeled me back when I got tired. We had so much fun that we started scheming about getting me an adult-sized running stroller and doing a 5k race. I had a smile all night and the following day. It doesn't really need to involve exercise, even sitting outside waiting for a ride can do the trick. Unfortunately my 4-wheeling adventures are on hold until things get a little less muddy, so I am finding new ways to get out and commune with good ole nature. You can't take the granola out of this girl!

So there you have it. The good, the bad, the ugly. No one ever said this would be an easy or straightforward journey. I will continue to roll with the punches, do what I'm told, and play outside as much as possible.

Cheers!