Other things that are not right? Nolan Ryan looking real old, the Duchess of Alba, María del Rosario Cayetana Alfonsa Victoria Eugenia Francisca Fitz-James Stuart y de Silva getting married and me going into U of M/club med tomorrow to start IV antibiotics. Why am I going back in after just having them in August? My lung function is in the toilet. When I say toilet I mean seriously, I just about shat when I saw what my PFT's were on Friday. But why? Read below..
Last week I came down with what I thought was a cold/sinus infection type deal. I started on Cipro (yeah the same stuff for Anthrax) on Tuesday and thought I was on the mend on Thursday. On Friday I headed to NYC for a little vacay and speaking engagement but started to feel pretty winded and was coughing more on Sunday. As any noble CF'er would do I shrugged it off thinking the Cipro will take care of this for sure. I don't have time to be "sick!" After seeing a record 5 shows in 4 days, and hanging in the city with my brother, sis n law, uncles and friends I knew that things were not good. My lungs and sides hurt, I was winded and coughing anytime I would go out. What I would usually walk, I took the train or bus.
Tuesday night I spoke at the Research Update for the NYC chapters of the CFF and felt great for the 2 hours I was there. Because I am delivering such great news about VX-770/blue pill, my mind really gets into it and I forget that I actually do feel like shit.
In the past two months I have seen my pulmonary function at the highest I remember seeing it and then on Friday at the lowest I have seen it. I've felt the best ever, running 5 miles, biking 30 a day and yoga 4-5 days a week. This week my lungs and back hurt, I'm coughing up some crazy junk and the thought of running 1 mile is making me tired. Also I dropped about 5 pounds and eating is not something I want to do..this is a HUGE change because I normally want to eat everything and anything (healthy ;) all day long. I have seen the best and worst of my health in 1 month and have seen it slowly spiral..know what's keeping me together? My family and friends. Staying positive, laughing and not making this my main focus.
Of course I could be super pissed about this because I know that I've been off of the little blue pill for a month and my body doesn't really like that. Also I'm sure I wouldn't be writing this post if I were still on my blue buddy. So I did spend a few frustrating minutes this weekend swearing..actually a lot but that doesn't really matter...I was just reciting every word that my uncles taught me.
Everything happens for a reason and focusing only on positive things is what I need. My main focus is getting healthy and ready to start training for a spring half marathon and maybe even a fall half iron man (minus the swimming..I'm a Pisces but I hate swimming.) as soon as I am released from that place.
Tonight I will watch the Tigers take down Texas and the tomorrow I will watch the Lions handle da Bears on Monday Night Football!
Em
4 comments:
Em, You are the tip of my spear. I am thinking all the positive thoughts I can in your direction.
Did I understand, are you off the "experimental" drug?
Best wishes, you know we are all counting on you. Kevin Shumard
why did you have to stop VX-770?
Ok, I just caught up with you older posts and see why you stopped taking VX-770. Was it ever determined if it was causing your side-effects? Are you planning to start it again?
You know! I love this BLOG!!!!
Post a Comment