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What Is it Like to Be Different Because of Cystic Fibrosis?

Traveling OverseasOne of my little CF buddies is down about his being different because of CF. I’ve been working a lot on empathy recently, and I can super-relate to how he feels. Growing up with CF wasn’t easy for me. In fact, growing up wasn’t easy at all, and many who know me really well would argue in fun that I still haven’t grown up even though I am 32 now. Why, just tonight I make a crack about beans and musical fruit in mixed company. /sigh

This is going to be a rough ride, but I want to let every single CF kid who reads this or has this read to them to know that I understand some, most, or all of what they are going through – because I’ve been there, done that, and now I wear the t-shirt. Am I over all of it? No, not even close. I could probably still spend another 2 years in weekly counseling to get over my past. It still haunts me and it makes Beautiful very sad to hear me speak of it. Reading all at once will probably make her cry.

My intent is not to make anyone sad, place blame, or bring up old stuff as a way of making people feel bad about any of it. People did their best with what they had, most of all my parents who had to deal with financial issues having two kids with CF and losing one and having quite the impossible one who survived. While I’d change a million things about my life, I wouldn’t change my family.

The key is to not wallow in it all of the time, forever. I don’t. I shouldn’t even think of it as often as I do, but social triggers are everywhere.

School

School was especially difficult for me for a variety of reasons:

  • In a class of 72, I was one of the 2 or 3 smallest boys (and girls) every year.
  • I had glasses. Not just any glasses, but the plastic ones because I was always breaking them by playing rough or getting roughed up.
  • I was really smart, which got me disliked, so I switched to acting up, which just made my life miserable with my teachers and parents.
  • I was in the hospital a handful of times during school, but usually 2 weeks every summer and I started with the sinus surgeries around the 4th grade every couple of years. I remember one year, my entire class drew an outline around someone on a roll of paper and everyone signed it with a “get well” note. We kept it for years, and I wouldn’t be surprised if Mom still has it.
  • Because of antibiotics and a couple of colds, I had managed to have a couple of unfortunate accidents of a #2 variety at school when I had the misfortune of not recognizing that the pressure was not gas. Those memories stuck in everyone’s mind forever and was something that wouldn’t have happened if I wasn’t different and I was smart enough to know that.
  • Because of school policy from kindergarten to my senior year, I had to go to the school nurse every day for my enzymes. For 3 long years, that meant walking 200 yards to the newer elementary building from the old building that was 4th-12th grade in the rain and snow. I was singled out every day without exception. Constantly reminded that, “no, you are not normal, and you never will be.”

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Just As Things Go Up, They Also Go Down

ThermometerMost of you know that starting on February 1st, Beautiful started working from home with me. Things were really tight because February absolutely sucked on the income front. We had to take out of savings to pay our obligations and I was feeling like a one-income failure, mainly because January rocked so hard that I was sure we could do this on one income.

Finances

March started out okay, but just okay. Beautiful was still quite concerned about how it was going to work because it wasn’t going to just be enough to make our bills for the month, we also needed to put money back into savings. We had a $3,000 hospital bill  (for our annual out-of-pocket max) from my surgery to pay and both taxes for 2010 and our 1st quarter estimated taxes were looming. This is why a $1,000 emergency fund is laughable for us – we really need to be on top of things to not sink, and she does an absolutely fabulous job keeping us afloat. She is succeeding where I failed for many years. She is my better half.

We started getting testy with each other because we were both stressing out, and I was beginning to consider her working part-time to create a buffer just to reduce the stress, even if we didn’t need the money from here on out. I was really torn because her allergies would make most jobs so difficult, she’d be more tired because just the housework is a fair amount of labor, and all of that would be risking having the same thing: a stressed and cranky wife. It would be a method of last resort.

After our 2nd or 3rd week of having a tense lunch, we finally worked it all out. The issue for me was that she was bringing it up at almost every meal. Sometimes we were spending precious work time just endlessly discussing our situation and never doing anything to improve it. That is a big red flag to anyone who is doing it. Stop it and start looking for ways to actually make things better. Here is how we did it.

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Using Cystic Fibrosis As a Crutch

CrutchThe opportunity to allow people to think I’m using cystic fibrosis as a crutch is the main reason I don’t let people into that area of my life too early. I discussed the topic of when to tell others a while back, and while I have decreased my incubation period significantly since starting this site, the principle remains in effect for a large part.

The words found below do not apply to CFers who are home-bound, hospital-bound, or confined to their bed until a transplant donor can be found. They have our utmost respect and compassion. I will be very thorough in my explanations to avoid any ill feelings, as this is a reflective, introspective topic for discussion.

I have lived two separate lives, each of which has been made up of various compartments. I believe that compartments are a highly effective method of coping and thriving with a chronic disease that can not only cause suffering conditions, but death at a progressive rate from normal life-expectancy averages. Before I move on, I want to be clear about this point as well: suffering conditions does not mean that each CFer is forced to live a life of suffering, as we discussed recently. If you’re too busy to read it now, the summary sentence is: “we don’t suffer from CF, we thrive despite it.”

One life: before I “had” CF

It wasn’t much more than a year ago that I didn’t “have” CF. That life consisted of two CF-related compartments:
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Guest Post: Continuing Life

Today’s guest post is brought to us by Bo Butler. His Ashley had her double-lung transplant in 2007. They go to Pittsburgh for her care and she is doing great! I trust that you’ll find this as thought-provoking as I did.

FamilyThere’s something I haven’t talked much about on my blog, so I’m grateful to Fatboy for the chance to guest-post-it-up. It’s something very important to both myself and to Ashley. Something, in a larger way, becoming increasingly important to a CF community that, for the first time in human history, has the medicine and the technology to stay alive longer. Long enough to want and to deserve more from life than simply breathing.

What is the goal of continuing life?

Continuing life.

Since she was very, very young, Ashley has asked little else from life than that she be able to have a child. Initially the problem was that no one thought she’d live past ten. Once she passed that they thought she wouldn’t live past twelve. And so it went. Until she got old enough that her body – hampered by lowered lung-function though it was – would be able to conceive and even carry a child to term.

And so of course worried doctoral hearts palpitated with warning. Blood pressures went up beneath blindingly crisp white smocks. Social workers were brought in. Discussions had. Fingers wagged.

Ashley’s a smart girl, though. Smart as she is tough. [Read more…]