Mutations, Uncertainty & Aging

I am a Type A personality. Most of the time it works for me, but I think in my CF world it works very much against me. I see things in black and white. Things are either all good or all bad. The gray area is extremely uncomfortable. I do not sit idly by, or go with the flow. It's not in my personality...it's not who I am. It is often seen as my biggest flaw. I am fully aware.

My gene mutation/combination is Delta F508 and R117H. "Dr. Bob" has told me on numerous occasions that the "R" mutations are very unpredictable. He can't really give me stats, because everyone with this mutation presents completely differently. I like my stats! CF stats have been ever-changing since my diagnosis. I am fully aware that stats don't mean much to each persons individual case, but I like to know my odds. Should I take the over or under? Should I put my money on red or black? The only true stat I have to go on currently is that 50% of people with CF will live to see 37.4 years of age. Does that mean I have a 50% chance of being alive 2 years, 5 months and 7 days from now (I'm not sure my math is correct...I'm just a Social Worker)? What happens after that 37.4 mark? That fact is that NOBODY can answer this question for me individually. Nobody has this answer. Ugh...there's that uncertainty thing again!

The CF world is so interesting. Most of us have a habit of introducing ourselves with our name and age. I'm known as, Stacey~ 34 yo w/cf. Nobody does that in the real world. For those with CF, our age is extremely significant. The honest truth is that I'm an aging CFer. I am completely honored to be an "old" patient...to have reached an age where non-CF people think my story is inspiring for the simple fact that I will be turning 35. When the average person says to me that I'm still so young, I think in my head that they have no idea. I wonder what they would think if they knew that I have made a conscious effort to keep all of my assets liquid and not contribute additional earnings toward my 401K. My financial guy urges me to think of the future, that 30 years from now I'm going to need this money to maintain my lifestyle. Huh, I guess I've gone with the under when it comes to finances. There's that uncertainty thing again...

I completely realize that nobody is guaranteed tomorrow. I am completely appreciative that I have been able to live to (almost) 35. I am hopeful! Anyone who knows me in my "real" life knows that I am positive. I ALWAYS try to look on the bright side...I ALWAYS try to put things into perspective, if not immediately, then eventually. So is it possible to be hopeful, but realistic? Is it OK that I sometimes feel uncertain and frightened, while mostly being positive and thankful? If so, than I am. I think I lived happily in denial for many years...but that's over. This is a process. Some days are better than others. I think it's much easier to be positive and happy when your body is cooperating. I haven't yet mastered how to keep this feeling going every moment that my body is failing me. I have learned that I need the yucky days, to help make the great one's even more meaningful.

I have had a couple of really crappy days over the past few weeks, with some amazing days mixed in. That is what has inspired this post about uncertainty. So now I'm going to complain. Here's where you can tune out it you don't want to listen to me whine... Last night we realized after 2 weeks on IV Nafcillin that I'm allergic. I had a delayed allergic reaction, 2 full weeks after starting the drug. I felt like I had the flu 10x over. I haven't been quite that sick in a long time. My lungs felt great! Everything else hurt... So I had to quit. I am a quitter. I could only make it through 2 weeks with this poison dripping into my veins, until my broken body couldn't handle it anymore. Now I'm allergic to all sulfa drugs, along with Penicillin's and I am becoming resistant to Keflex. Gotta cancel out all of those options... On top of that I now most likely have C. Diff and am on Flagyl. Flagyl in and of itself can be cruel, but C.Diff is worse. I was hospitalized for a week in 2000 for C.Diff and it sucked. I'm susceptible every time I am on IV's or long-term antibiotics, due to my history with it. Thanks goodness we caught it early this time. I am still waiting for my mycobacterium culture results, which may take weeks if not months to process. That's just the nature of that bug. I KNOW it could be much worse. I've been reading the blogs of my transplant friends and the struggles they have been faced with just recently. The crap that I've had to deal with over the past few weeks it absolutely nothing compared to their experiences. For what it's worth, though, I think this CF stuff SUCKS! Whew...that felt good!

So now I'm moving right along... Now, I'm going to flip the switch and bring it back to the moment. I am going to try to forget that I was writhing in pain during this allergic reaction last night and I am going to try to focus less on the gray area, that being the future. Today is today! Today I feel much better!