It’s been three months already, so it’s time to make my trek back to Tampa General to see if I’m still improving with age. My numbers have gone up since going completely compliant in March, so that trend should continue unless I’ve just come down with something this week with Beautiful being sick. The goal this visit is to blow a 40% FEV1 and a 42 would make me ecstatic (it’s a “Hitchhiker’s Guide to the Galaxy” thing). She is coming with me on a very rare trip to clinic because she has to be at work at 8am and my clinic appointment is always at 7am. She just told them matter-of-factly that it is my clinic day and she is going with me. After work, she has an appointment with an ENT/Allergist to see what is ailing her.
I’ve seen a lot of clinic visits being posted and tweeted about with great results with my new-found friends with a couple of unfortunate hospitalizations and a bad case of c-diff. It almost seems like everyone is doing a better job taking care of themselves and the meds are working. Go figure!
It doesn’t come without sacrifice on one end or another, though. For us, it’s co-pays out the nose, making budgeting impossible. For others, it means being on disability (which means you darn well better be compliant if you’re just sitting at home, right, right?). For others, it’s just a hard life that I used to live with a split life of work, school, family, and treatments. I’ve only crossed off school from that list, but once you enter into the family part, it’s a whole new world.
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Careful, she may be gross...
This was by request from Beautiful after watching a Twitter conversation I was having with another CFer about our ENT visits. This conversation happened to be going on with a seemingly “cute and regular” young woman as far as her sinus surgery pre-op photo with pigtails and a big grin showed the world.
Before you know it, we’re talking about boogers and other gross sinus/nasal stuff. Quite a shock from the cultural norm, but CF girls aren’t like other girls that way. Sure, they don’t like to talk about this sort of stuff (at least I don’t gather that from our more normal conversations that happen every day), but they aren’t bothered by it. I haven’t found a guy yet who didn’t like to talk about bodily functions, so I’ve got that spectrum of the global population covered.
Topics CFers bring up that gross out others:
- mucus
- snot
- boogers
- polyps
- enemas
- blood (especially hymoptysis)
- injections
- puking
- surgery
- puss
- diarrhea
- particular things that happen that are gross as they happen
I think this should stand as a generally good reason why 2 CFers should not marry, aside from the whole issue of getting each other sick constantly and not being able to rely on the other person to be somewhat healthy enough to care for them if things should turn for the worse at some point. Can you just imagine the conversations that would go on in that house? Not to mention a number of other gross things that our spouses have discovered after moving in and realizing what they go themselves into. 
Sometimes you just have to say, “trust me, you don’t want to know, so you’d better stop the questions before you get details you don’t want.”
I put out a special request tonight for a topic about Fatboy or CF and got this one in from Jessica – a.k.a. @chronicuriosity:
“Fatboy…the Early Years” or more on why your illieus issues @ birth still cause issues (I’m a illeus baby, too – hot dog scar!)
I’ve promised to stop talking about my bellyaching for now, so here is another angle that I didn’t cover in my posts on my scar or any of my blockage posts. I’m turning this into a personal/community request for information and feedback.
I’ve always noticed that my scar (shown again for your benefit) seems to be directly attached to the abdominal muscles beneath it. You can try to grab my scar and pull it outward, but there is nothing to grab onto because it’s so tightly pressed to my muscles, which were totally raped by the surgeon. I have a 3 1/2 pack, even though you could roll a car over me with my strong abdominal wall. This photo was taken before I got a nice layer of fat from my additional 15lbs of weight, but all you can still grab is fat.
It has been cosmetically bothering me because my added weight gain has created a crease running across my gut that is visible to all because my shirts are all tight now. I look like a fat slob with two beer guts instead of one. I know it’s petty, but it is also uncomfortable because I know my stomach and intestines could expand more if they weren’t being held back by the scar.
Do any of you have an attached meconium ileus scar or do you have “freedom” between your scar and underlying tissue? If you have “freedom,” do you agree with my issue or do you wish you had my problem because your stomach just keeps getting bigger and having the scar keep things in check would be nice? Let’s get the CFers chiming in here, since only 10% of us are born with meconium ileus.
Tombstone Humor by ~MikeHungerford
I half-joked a little while ago about how mad I’d be if I add someone to my blogroll and they kick off – because I don’t handle death well. I know I don’t, but the reason is a bit strange and indecipherable exactly why.
Death has surrounded me, yet evaded me my whole life. It’s been in my immediate family with my sister, but I was too young to remember. It’s been in my surrounding family, but people I wasn’t really attached to. I’ve spent countless hours in the funeral home growing up as my grandparents’ siblings passed through.
Aside from that, there have only been two people close to me who have died. One in a car accident and one after 2-3 years fighting multiple myeloma. I think the accident was harder. He was 3 years younger than me and had just gotten engaged. The memorial service was literally gut-wrenching. Our church was packed with everyone, including full fireman detail since he was a volunteer fireman. There was no preparation for his death, he was in the prime of his life in perfect condition, and then he was gone.
Now that I’ve started this site, I’ve exposed myself to a high-risk population. Death was one reason I had insulated myself from CF people. I don’t like to lose things, especially people. I find it hard to make friends, so it’s a big investment of time and emotions for me to put myself out there. Click to continue reading this article…
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It’s been three months already, so it’s time to make my trek back to Tampa General to see if I’m still improving with age. My numbers have gone up since going completely compliant in March, so that trend should continue unless I’ve just come down with something this week with Beautiful being sick. The goal this visit is to blow a 40% FEV1 and a 42 would make me ecstatic (it’s a “Hitchhiker’s Guide to the Galaxy” thing). She is coming with me on a very rare trip to clinic because she has to be at work at 8am and my clinic appointment is always at 7am. She just told them matter-of-factly that it is my clinic day and she is going with me. After work, she has an appointment with an ENT/Allergist to see what is ailing her.
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CF Fatboy is a small business owner flourishing in Tampa, FL. He and Beautiful have been married for 3 years and are doing everything they can to ensure they have a long life together.
