Cystic Fibrosis Fatboy

A heck of a lot, and nothing at all. Lots of stress, though, plain old stressful!

Beautiful and I have been having a heck of month with her allergies after getting back from our Labor Day break in Ohio. She went off her allergy meds that week to prepare for her allergy test the next Wednesday (now last Wednesday). You can read about those experiences on her blog in much greater detail than I care to re-create here.  A quick synopsis that explains my absence is easy, though: she had a scary reaction during the testing and the visit, along with a previous balance, came out to a couple dollars short of $1,000! Thus, I’ve been a very, very busy and stressed Fatboy.

I’m sure we aren’t the only CFer family out there with these feelings, but perhaps I can lay them out for discussion since we’re all friends here. Do you or your spouse (going either way, regardless of who has CF) feel like they are giving up some portion of their life dream for a period due to CF in the family with a fear that the sacrifice will be permanent? We hopefully all have dreams and goals, but CF just seems to find a way to throw a monkey wrench in the works.

For us, this dream has been placed on hold until I can bring in some serious cash, and that really bothers me. It bothers me to the core, and those of you who know me in person may have an idea why. I am far from lazy and would likely be pegged as both an over-achiever and a workaholic. I can be a severe workaholic if Beautiful doesn’t remind me of my family priorities and obligations, not to mention not working myself into an early grave from exhaustion and infection. That sure won’t see our dreams realized! I work (previously work and full-time college) because I don’t want laziness to get the slightest grip. I could lay around all day and watch TV and become quite accustomed to that. I sure do enjoy that lifestyle on vacation, but I don’t want to give anyone the opportunity to label me as different or associate my activity level with CF.

It horrifies me to think that there may be a day in the future where someone will ask why I don’t work and don’t leave the house because I’m on “the list.” We have finally come to grips that it is a very real possibility that I will need a transplant someday, but the hope of keeping myself healthy with diet, exercise, and medicine is pushing me to prepare for that day so it doesn’t affect us beyond me being sick for a period of time followed by surgery and recovery and then get on with our lives with a renewed vigor.

Any idea how much that costs sitting where we are today? I am figuring that (as long as I can continue working from home up until surgery) it will come out to around $50k in lost wages and expenses for the 6 months surrounding surgery. That’s a pile of cash and it cleanly scares the junk out of my trunk. On top of that, there is the whole discussion/matter about having kids and how that will happen and how much that will cost.

So there you have it – that’s why Fatboy has been too busy to write or be on Twitter. It’s not just getting things done at this point. My mind is full of mush, muck, and more negative things than I would care to admit to. While I share a great deal of it with Beautiful, to dump all of what is in my brain on her at once would be unfair and unproductive, so I usually have my “down day” once every week or two now. I’m unaware of why I’m down half of the time, but the next day, I get an idea based on where my thoughts were for the previous 24-36 hours.

So… what’s up with you guys… on the inside, that you haven’t shared on your blogs or on Twitter?