That Awkward Moment

(100% true) At my work, years ago. Along with several coworkers, I'd just walked into "Steve"'s closed office. "Michelle" was already in the room talking to Steve about some project. 

The Jellyfish Debacle

I was at the beach with friends and my wife. Strangely there weren't that many people in the water. Lots of people on the beach though. I waded into the water, went out far enough that I was up to my neck. Was really nice. Pretty summer day. Peaceful, had the ocean to myself. 

I had the nagging sensation of having to pee. People keep telling me that its okay to urinate in the ocean, there were no restrooms anywhere near by, so I decided to give it a whirl. I didn't want to pee on my swim trunks (nasty!), so I pulled them down. Later, my wife would ask "why the hell did you pull your pants down? You're in the ocean!". She doesn't seem to see the difference between peeing in the ocean, the urine being dilute, and directly hosing down your shorts. 

What Happened to My Star Wars Toys

I had almost every original Star Wars toy. Most of the action figures. The Millennium Falcon, Tie Fighter, XWing, YWing, Cantina, Death Star, AT-AT (Snow Walker). You name it, I had it. My parents weren't well off, but somehow I scored most of the Star Wars stuff.

One Saturday morning, age 17, I wake up, Mom comes into the bedroom and says this: "Hey Eddie, I had a yard sale this morning. You know all of those Star Wars toys you don't play with anymore? I got you a whole $20! Here ya go honey."

All of it. Gone.

Geek Boy's First Kiss

Watching an episode of Big Bang Theory triggered an embarrassing flashback.

My first kiss.

I wasn't very good at social cues, norms, knowing what to do in situations just by instinct, etc. Always had to learn things by studying people's behaviors and practicing. I was terrible in my drivers ed course. The driver's ed teacher almost strangled me because I was constantly asking the exact angles that I needed to turn the steering wheel.

My Hero Says: "You Need to Get Your Head Out of the Clouds"

In high school, I had this teacher that I really looked up to, a hero. He taught history, made it really interesting and exciting. He was an ex army coloniel. He looked and acted like he had stepped right out of a movie.  He exuded charisma. He told all of these stories of incredible things he'd done and seen. A truly larger than life personality. The students all hung on his every word. I was impressionable, I thought of the man as a mentor, and in my eyes he could do no wrong. All I wanted to do was impress this man.

When I was about to graduate high school I was in his office, he asked me what my plans were. I was a techie, geeky kid and I'd been programming computers since I was 9 and had a dream of having a job at NASA. I told him I wanted to work there. He laughed, and it wasn't really a nice laugh. It was a "you're being a fool" kind of laugh. He said "Eddie, you need to be more realistic, set your sights lower. My sons are top of their class at Virginia Tech, and even *THEY* probably won't be able to get a job at NASA. You need to spend a little less time with your head in the clouds." As you can imagine this was devastating.

Chronic Pain - The Experience

This is for you out there that are in chronic pain..

An endless expedition up Mt. Everest in a blizzard. No glorious photo-op moment at the top. No way anyone can understand your herculean efforts in this impossible mission. An honest person, you find yourself lying everyday. "How are you?" "Fine". You shield those around you from what you are going through, not wanting to spread the misery. You compartmentalize the pain (Spock-like) as much as is humanly possible, but sometimes it overwhelms you.

I'm One of the Only Living Adults in the World with Cystic Fibrosis

Cystic fibrosis almost always kills before a person reaches adulthood. You wouldn't be able to tell that I have a killer genetic condition by looking at me. I have an almost impossible genetic mutation of this already rare condition where my lung damage is mild. Has Johns Hopkins and NIH scratching their heads. They told me they would "learn more from me, than I would from them". They said I would probably have a normal lifespan. 

I spent my childhood trying to tell my parents and doctors that something was wrong with my lungs and they said everything was normal. Doctors said lung xrays were normal. I remember thinking that maybe the xrays weren't sensitive enough to see what was wrong. My dad, a tough military man in the south, would tell me to quit my whining, and I did. I kept the observations of abnormal sensations to myself. Dad so wanted me to be good at sports. Would yell at me "You aren't even trying!" when I'd have to stop because my lungs were on fire or because I would feel suddenly dangerously dehydrated. (20+ years later, I would learn that cf can cause sudden potentially fatal dehydration. Really? No sh!t..) Despite what authority figures were telling me, I knew I had to be very careful and sensitive to the important signals my body was giving me. 

When I got older I was trying to figure out if my odd symptoms and the lung issues were connected or separate issues. I knew that since doctors couldn't figure anything out, I was in constant risk of being labeled a hypochondriac, which would add yet another obstacle to figuring out a seemingly impossible puzzle. I got misdiagnosed multiple times. At one point I saw notes from a specialist (a nephrologist) to my family doctor suggesting that I might have psychogenic polydipsia - a mental disorder where I imagined I was dehydrated and was engaging in excessive water intake. Nice, huh? This particular nephrologist got frustrated with me and announced that he "had REAL sick people to deal with." 

I diagnosed myself specifically with cf years before the doctors did. I'd had a variety of strange symptoms, lung issues, pleurisy (strange for a 30 year old), low vitamin D. Throughout my life my colds almost always turned into lung infections that wouldn't go away until I took antibiotics. Common with cf. This and many other signs pointed me to the possibility of cystic fibrosis. I asked my family doctor what he thought about cf. He chuckled and said I'd have "clubbed fingers" and would've been long dead before age 35. At the time I accepted this, but he was wrong.  Since then, I've encountered many doctors who think the same way.

The variety of emotions that I felt when they verified years later that I did indeed have cf - I can't even begin to describe. No doctor made the brilliant diagnosis. A doctor stumbled on it by accident. My wife and I weren't conceiving. A fertility doctor discovered that there were no sperm in my semen. From an exam of my testicles he said I had 'bilateral absence of the vasa deferentia'. In English, I was missing the tubes that deliver sperm, I basically had a natural vasectomy. There's one main reason a male is missing the vasa deferentia - cystic fibrosis. Then the tests started, but I didn't need them... I knew. I'd always known. A quick and easy sweat test showed my sweat was extra salty, another major sign of cf. A test my family doctor could've easily run years before if I'd just been more stubborn, but doctors hate it when you diagnose yourself. You're supposed to let the experts do their jobs, right? This seems to be a frequent pattern in my life. Having a contrary opinion to experts, but being the polite southern boy dutifully listening and obeying, only to be burned in the end. I think it may be time to start believing in myself a lot more. I've always tried to avoid coming off as arrogant, maybe it's time to stop worrying so much about what people think. The genetic test showed exactly which cf gene mutations I had. They were going to do a test for 300 genes but I pushed for the "complete" gene test (around 2500 mutations) with the assumption that at least one mutation would be an extremely rare one. I was correct. The smaller test would not have caught the second almost unheard of mutation. I even had to pay out of pocket for the extensive gene test, I think it was a couple grand (will verify this info). Hopkins lung CT (more sensitive than a lung xray) picked up the minor lung damage. When I was a kid and thought the lung xrays didn't have good enough resolution, I was right. Simultaneously an ego boost and a nightmare all wrapped in one. As a kid, I'd ID'd what was wrong, but just didn't have the technical name. A bone density scan showed that I had minor bone density issues, another cf symptom. I also highly suspected that my mom had had this atypical cystic fibrosis. She'd died years before, age 67, from respiratory failure. They'd thought she had some atypical form of asthma, and had been on a nebulizer machine for years. I asked the Johns Hopkins doctors "my mom had it too didn't she?" They nodded, and said almost certainly. With women with mild cf it was even harder to diagnose because they don't have the natural vasectomy to give it away. They told me to never smoke, because it would accelerate the cf and be a guaranteed death sentence. Advice my mom could've used because she would smoke from time to time when she got stressed out. If the doctors had accurately diagnosed her, she'd probably still be alive today.

Being a real life case from House is the sh!ts. Especially since nobody like Greg House actually exists to save you. Trust me....  I've looked.

[This is a stub. Will be writing more about cystic fibrosis, my unusual case, and medical mysteries here soon.]

What I Learned in Europe

On my first European backpacking trip, I learned that they really frown on you exploding cars in France. 'Don't blow up your cars S.V.P.' Just noticed, apparently they also hate trumpets.