It was a big step for me, in confronting this new phase of my health. While cystinosis (and therefore, the muscle wasting associated with it) is progressive, I believe in fighting and being proactive in the avenues I can be. Although I cannot reverse what is happening or undo the damage that has been done, I can work hard to give my body assistance and do what I can to stay strong. he is going to give me a regimen of exercises to do to aid muscles that are connected to swallowing and also voice. I'm jumping in and taking action. and even if it doesn't help, at least I can say I did it.
At the suggestion of my awesome, inspiring, courageous friend Jessica, I purchased these cool tension balls to exercise my hand and arm muscles. There are some jokes there that I won't make, ha but... I'm excited! Knowing that I'm taking an active part of fighting back is oh so good for my heart and soul.
I've been living my life in fear the past several months: fear of the unknown, fear of Sookie growing up without me and not remembering me, fear of losing my voice, fear of having to eat nothing but puréed foods because of esophageal muscle wasting, etc, etc, etc. But a few nights ago during bath time, I watched as Sookie became so overjoyed with glee that she was screaming YAY at the top of her lungs and smiling so wide, shaking with utter happiness. Okay girlfriend, I get it. Life is short. Splash in the tub until the floor is as wet as the ocean, take your monkey for a walk on a cold day, eat your soup on the kitchen floor, slam the bell from pit while singing 'Elmo's world' as loudly and obnoxiously as possible... live it up, always bite off more than you can chew, grab fistfuls of life and suck the marrow out of each day because this is all there is.
That is where I am and what is happening.
How are you?
xo.
tahnie
