It is time for me to write, because I know things are swimming around but haven’t flushed through them yet and need to do so.
I have started my inhaled antibiotic as of three days ago. It seems strange to be doing the antibiotic when I don’t feel I need to.
That is one of the funniest, peculiar phenomenon’s about cystic fibrosis. I sit here and do my therapies daily, twice daily; tick-tock, tick-tock. I write, like I am doing now; I listen to music, I pay bills, I check Facebook, sometimes I read; however, that task is always a little hard, because my body bubbles, thus so do the words. Sometimes my mind goes off to space. Some people would say this is meditating, I guess it sort of is.
Some people say I over-think things, well, I have a lot of time to think; an hour a day really. I don’t think people sit down, stop, and breathe, for an hour a day much anymore. I am forced to, so here I am.
I have been thinking about a fellow CFer lately. She has a blog, is a pathologist, and has done P90X. If you don’t know what P90X, it is a crazy work-out program for 90 days, an hour a day. You do a muscle group, cardio (Plyometrics – crazy! – Kenpo, and some other exercises I haven’t gotten to yet), then another muscle group or two the next day. Six days in a row, while the seventh day is for rest or stretching.
She did it 4 years ago, and she raised her PFT’s 39%, and her small airways, nearly 70%. She is fairly fascinating. I like the way she writes. She seems very common sense oriented, determined, and a bit of warrior herself. She is after all 51 years old.
I kept hearing, reading P90X, P90X, P90X! Ok, ok, ok, I get the point! So I have taken this endeavor on, crazy as it is. I am also going to swim with my Ziggy Stardust goggles soon. I almost did last week, but my body couldn’t achieve what my mind wanted – I think.
I am not sure what I got myself into. I am feeling it. I had to skip my rest day because my cycle is a little off. I want my break day between my Friday, Saturday shifts where I work 2 12 hours.
I know I am a little crazy, with a lot of stubbornness and determination inside of me – and this here is driving all these forces to the max.
I am almost 34 years old. I am striving, literally striving to get into the BEST shape of my life. Thirty-four rings high and settles deep in me. A friend of mine, Mark, had CF and passed away at 34.
He passed away on August 25th, 2008. He had b. cepacia, and he kept it to himself. Unsure if any of friends of his knew but his wife did not. It was only in the hospital – his last days – that she was informed officially, readily told as if she was in the know.
We met at a CF conference and we became instant friends. Mark and I had a short-lived relationship, cause well, I am gay. He was probably the closest I ever got to a “real” boyfriend. And yet, it just didn’t seem right. I broke things off, as he was getting closer to me emotionally. He was a great guy who deserved to be with someone who felt the same way about him. It wasn’t fair to him. Three months after I broke things off he met his future wife. They got married that following year.
It is frowned upon to be with another CFer as I could have gotten his b. cepacia if he had it then. I don’t know when he got it specifically, and if he could have actually given it to me. Nonetheless, there were quite a few GOOD reasons we broke things off, but we remained friends.
We lost contact for a while, by me mostly since I moved out here to Boston. I dug around to find him, since I busted one of my phones, thus lost all my phone numbers. His last name was also very common. I dialed his number, left a message, and his wife called me back and told me Mark passed away three months prior. She and I spoke for an hour, as she proceeded to tell me the details and how she was the one to take him off of life support on Mark’s brothers’ birthday – a shitty ingredient to this very sad moment; one that makes you stare into space longer and harder, shaking your head. He went down fast, in two weeks time. He was admitted, ICU, life support and then . . . peace.
The heat combined with humidity hammered Mark down, and his b. cepacia took over. His wife bawled on the phone, as I remained in shock and comforted her best I could. She sent me pictures of their last trip together. Mark was always so skinny; maybe 5’5″ and 140lbs, at his best weight.
Mark was an inspiration, because he handled his CF with such grace – or at least it seemed. He did enough to get by, not enough at times. I remember when he was diagnosed with diabetes and his weight got down near 120lbs; he just looked so sick. I visited him; this was when we were purely friends. The physician was a bit of an asshole to Mark. He threatened him that if I remember correctly, “If you don’t stay here – meaning the hospital – you will die.” Mark told to get the F out of his room, and bring in someone who can talk to him like a human being. The physician was speechless and walked out. The physician had a huge ego, so I could see it.
Mark stayed in the hospital over the weekend after speaking to a few compassionate nurses. The physician actually came back and apologized to Mark. I don’t think this physician apologized too many.
Mark proceeded to get better. He started taking insulin and gained 20lbs back. Mark had spunk and was known for it – a little mischievousness too.
So I remember him as this time as I hammer out P90X, and continue on for myself but for him too.
Thirty years old was the year to achieve, now it is 34, maybe even 35, 40 alike; but not just to reach it successfully – but to reclaim it, turn it on its’ head, and to SMASH it.
I am thankful, blessed to have known Mark. Breathe easy, always.