The Scarlet Letters: CF

I feel like I’ve been running from a monster most of my life. It’s the type of running you see in the movies when zombies are closing in on the humans or when Dustin Hoffman sprints away from the bad guys in Marathon Man. It’s called running for your life. And on day 18 of this hospital stay, half my ass is missing from where cystic fibrosis took its most recent bite.

Today is also the day when I had to let the company I work for know about CF. No more hiding it. I have certain protections now under the ADA, which is nice, but I’d rather not have to deal with it and be CF-free. My denial is over – I have CF. The HR department was very nice about the situation. However, as of today, I’m not allowed to work in the hospital until my doctor provides a letter stating it’s okay. In a way, I feel like a weight has been lifted off of my shoulders. I’ve been hiding CF and my hospitalization for over 10 years now. How many conference calls have I held in hospital bathrooms? It might be nice in the future not to have to do a dance every time I go in for IVs.

So, here I sit, wings clipped, and I can actually take the time to write a post. It’s such an odd feeling not to be working, not to be thinking about work. I don’t like it, but I don’t have a choice. And I may find a way around it. (Fox has many tricks he can share.) I have another call with HR tomorrow and I’ll know more about what I can do and I can’t do. And I realize that from this point forward I’ll be linked to CF at work. That bothers me. I might as well sew a big CF on my chest. It’s not about me anymore. It’s about us – me and my zombie pal CF. Someone send me a sawed-off shotgun, please. I need to blast its head off.

Please ignore my previous post

I spent most of Saturday playing the world’s greatest indoor sport – feeling sorry for myself. Today is looking much better. Not sure why the wheels came off for a day. My apologies. I thought about deleting the post, as I’m embarrassed, but it is what it is and part of a much longer record for my family. Even I have a breaking point.

Part of the problem may have been a virus. I’ve had chills and low-grade fevers and sweating like I’m detoxing from years of substance abuse – not that I know what that’s like but I have seen it in the movies. 🙂 At least one of the doctors believes I have a virus. That’s the easiest diagnosis for doctors to make. I didn’t have the heart to argue. She looked so happy making the diagnosis. Who am I to spoil her buzz? And in this case, I may have to agree. When I entered the ICU on Saturday, I remember the arrogant doctor there being sick. And there was one other staff member sick, though he denied it when I asked if he was sick. Liar, liar, hospital pants on fire. It was obvious.

Thank you for reading. Life is looking better from my knees today than from my back yesterday morning. Tomorrow will be even better.

Dark Thoughts Slither Back

Two weeks ago today I sat at my computer. With my airway clearance completed and a stomach full of McGriddle, I had the entire weekend ahead of me. Would we spend it at the beach? Any local events? What to do. Then I coughed and it was blood. Not a lot, but a surprise. I wasn’t exercising or doing anything that might create that result. But there it was in all of its glory. And I knew the weekend was gone and I needed to bother my doctor for some cipro on a weekend.

Today, I sit at the computer, an iPad, and my location is a hospital room. Day 14 of this unbelievable odyssey continues. And though I’ve done a good job up to now holding back certain thoughts I’ve fought with for 30 plus years, I feel like giving up, ending it. It’s all so overwhelming – the past two weeks and the future. I’m not sure how I am going to do it, balance everything, work, life and possibly oxygen for the first time. The O2 feels like the least of my worries. Just trying to keep my life as I know it presents the most fear. Do I have the energy to live it?

I used up all of my fighting-stress reserves the past two weeks. I have nothing left. I feel like a piece of safety glass fully cracked and splintered. One tap to it with a hammer is all it will take to shatter the glass into a thousand pieces, never to be put back together again.