So not a whole ton of improvement breathing-wise.. I understand it takes more than 3 days... I'm not the most patient.. They have added IV Solumedrol to the mix. I was on the medrol (pill form of solumedrol) for 7 days prior to this admission and it didn't do a lot of good. So, I'm cranky, weepy, super sweaty, jumpy, restless, angry, hopeless and still full of nasty mucus, still short of breath and pretty downright temper-tantrumy.
I want to be better. I want to lace up my running shoes (literally) and just run. Not staying within a 2 mile radius of my house "just in case." I'm sick of paper masks and being bound to my kitchen. Don't get me wrong... I love my kitchen and the warmth of my home, but there is a whole wide world out there that I just want to take by the bootstraps and live...
I talked to my Tom tonight and he was joking around with me about the annual family easter egg hunt that he might give me a few clues about where the eggs were hidden (to digress-- even if ST told me, my sister Erin will take anyone in her path down for those eggs... so ... )-- but it got me to thinking... We have this one shot... this one life.... I just can't do it this way....
I want my baseline back.. I want running back 30 miles a week (ill take 50% of my peak), I want to read a FULL book to Alejandro at bed time and not have him ask me when my regular voice will be back.. you know, the one that doesn't run out of breath mid way through The Lorax....
Tonight Ale (he's 5) asked me why I am in the hospital so much. He knows I have CF. He knows I have mucus. He knows I'm sick. We re-explained to him all of those way too sordid details for a 5 year old to have to know... I told him that if he wanted to stay at home all day tomorrow (Sunday) with Mama (nitza) he could so that he could play with his lego table at home not the lego table we rigged up here and play with puppies and do those kind of things and he said, "No Tari (he calls me tari... Kind of like tara and mommy mixed) i want to be where you are." SLAM... I felt something really big in that moment... he's five and he understand more of life than I do at times... except when he is putting darth vader's light sabers into my mother's nose or mouth or ears.. (sorry mom.)
Wow, I'm all over the place but I guess I'll keep going... back to the life is short thing... I am not fulfilled entirely.. let me explain that..I am utterly head over heels in love with N... I would give my life for ale ... I have the greatest mother and tom and siblings ever...it's the other parts... there is a profound emptiness... and it could just be because I want to be better.. or normal--
so i'm sad and im lonely and Im drenched with solumedrol sweats and i want to go home and I want to get better... and the whining will cease now.
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