Author Archives: unknowncystic

And the decision is . . .

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I stepped off the cliff and quit my job Wednesday. It’s the first major decision I’ve made that I didn’t second guess.

I’m all in.

It’s a risk, but I took it. Two weeks to go at my current job and a great 15-year chapter of my life closes.

What is there to say? © ArtFamily - Fotolia.com

What is there to say?
© ArtFamily – Fotolia.com

After I told some of my work friends, it’s been a draining experience. First, telling them was hard. Then hearing the very nice things they had to say about me – well, some tears and choking up.

The part that surprised me most was the respect people had for me jumping ship at this stage in my life to improve my skills and try something new. It caught me off guard. I work for a great company with fantastic people, but it’s full of processes to be followed and is rigid. For some, I believe they would like to escape and do something else too.

Again, I’m grateful for my luck in life.

So that’s it for tonight. I’m tired because I haven’t been sleeping well. The stress of this situation keeps me up late and wakes me up early.

I am so lucky. Thank you, Universe, for my good fortune.

 

One of the biggest decisions of my life

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I’m stressing. I have to decide whether to change jobs. My answer is due Tuesday.

I’ve been with the same company for 15 years. It’s a large global company and one of the most recognized brands in the world. And it’s been great to me. I’ve worked out of my house and the pay and benefits have been fantastic. With cystic fibrosis, it has been the perfect job.

In return, I’ve worked hard for the company. It’s been beneficial for both of us.

But . . .

After 15 years in the same position, and because the headquarters is located on the east coast, and I’m on the west, the work has become tedious. And the process to innovate is painful. Creativity grinds to a halt. That’s the downside. It’s also not much of a challenge.

A few months ago, one of the smaller companies we hire to help us with large projects, approached me to work for them. As I was working on a major event at the time, and didn’t want to leave and hurt my current team, I postponed the conversation.

Well the project ended and they made me a formal offer this week. I have until Tuesday to decide. The pay is better and I get a nice signing bonus. And I can work out of my home. And the work is exciting and envelope-pushing. And they want me for my creativity, which appeals to me a great deal.

Yes, I have a tiny bit of ego in my head, I guess.

If it weren’t for cystic fibrosis, I’d jump ship right now. Take the risk. But the overall benefits are not as good as I have now. I still need to check out the health care in detail this weekend, but I do know the prescriptions will cost twice as much. And I have a possible pension I’m giving up by leaving now.

Will I really live to see that pension? Can I grind out the years it would take to get to retirement?

I’ll stop there. I like change. I hate big decisions.

To be continued . . .

My Daughter, version 12.5

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Strategy.

That’s the word my wife and I use most these days when discussing our 12-year-old daughter. We read parenting articles and strategize how best to deal with angry responses and other “tweenerisms.”

We do our best to stay calm when she ramps up and relives her toddler days, but with a greater mastery of the English language.

She is a missile. And we, at best, have a slim chance here and there to nudge her and redirect her flight path, helping her miss buildings and mountains – and us.

Gone in the explosion is my fantasy of having control over her direction – of logical father/daughter talks and sharing any wisdom of life I think I might have.

Nature vs. Nurture? Nature is winning. And hormones.

Don’t get me wrong, we love her and feel grateful to have her. But for me this stage has been the hardest.

As I’m an idiot, I thought it would be different – smooth – we’d talk out things. I underestimated the emotion of youth, her brain still forming, resulting in firecracker responses and logic crushed to death.

Delusional, I was, that we would get a pass on this stage.

Worst of all, she’s more like me than my wife. That scares me. All of the mistakes I made in my youth. I hope she can steer clear of the same behavior.

Oh, Universe, don’t let her be the same. Let her be smarter.

Despite the more challenging moments, there are the ones that remind me that it’s all worth it. For those, I’m grateful. Because without them, we’d let the wolves raise her – I’m kidding. Wolves would eat her. Kidding again.

One day, she might read this and I’m going to get my ass kicked. Oh, well, I’m used to it.

 

Pure luckiness

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Recently, while backing up in a parking lot, my foot hit the brake and the accelerator at the same time. My SUV lurched backwards quickly before I could step on just the brake. Luckily, no one was walking in back of me and I turned the steering wheel enough to miss the cars in the row behind. I was more worried about hitting people.

Luck. 

I wish my luck tranferred to Vegas and the Lotto. © Maksym Yemelyanov - Fotolia.com

I wish my luck tranferred to Vegas and the Lotto.
© Maksym Yemelyanov – Fotolia.com

It’s an uncomfortable feeling to look back on that event even though no one was hurt. The mental nausea of the moment overpowers, forcing me to think about something else.

What if there had been people there? How would my life have changed because of that mistake?

Sometimes near-misses from my past gang up on me, and I am forced to remember how lucky I am to be here, alive.

A heaping mug of gratefulness I gulp from.

I have a wonderful, brave and caring wife. A fantastic and intelligent daughter. A house. Two dogs. A job that allows me to work from home, knock on wood. A stocked refrigerator. Friends in person and online.

Clearly, I am living proof that life isn’t fair if I got this much.

Oh, there’s the cystic fibrosis. Yeah, that’s been, well, not good. No doubt. But I inherited a variation of it that’s allowed to me have everything and more in life. I have no right to complain about CF* – or anything else.

That’s it. Clearly today, I’m feeling pretty lucky and grateful to the Universe that bestowed it on me.

I know all of my good fortune could change from this point forward. However, looking back on my life, there’s no arguing that I’ve been a very lucky man.

****************************************************************************

*I reserve the right to complain during hospital stays.

One year of using a treadmill desk

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I rotate through shoes each day. So far, they've lasted a long time. Walk, walk, walk.

I rotate through shoes each day. So far, they’ve lasted a long time. Walk, walk, walk.

Here’s the fact I like most about the past 12 months of walking 50 to 70 miles a week while working: One hospitalization.

Yep. In years past, that number would be two or three hospital stays in a 12-month period. And the only reason for the last visit in November was because I caught the virus from hell.

Luck? Perhaps. But isn’t luck something we make ourselves?

There’s no doubt my conditioning is much better. I don’t get tired when we’re out and I walk a long distance. I can stand while others with normal health sit. I can stand all day now.

(Knock on wood to all of this, as life has a way of punishing me when I write good things here. I’ll risk it.)

So, in the last 12+ months, I estimate I’ve walked across the country – 2,500 miles or more. I average 10 to 14 miles a day, and 50 to 60 a week. Sometimes more than 70. My record for one day is 18 miles.

Total steps in the last year: I’m in the millions. I wish that total was in dollars.

I do my treatments while I walk. I eat M&Ms Minis while I walk. I eat and spill yogurt while I walk. I’m writing this post while I’m walking. And so far I’ve done all of these without wiping out, though I’ve had close calls.

The one downside created by the miles is planter fasciitis. The reality: my feet hurt. It’s hard to walk barefooted now. But it’s been worth the benefits to my lungs and the endurance I’ve gained in my legs.

I’ve lost about 10 pounds, a lot of it around my gut. And I’ve done it without eating less.

I’m grateful I read the New Yorker article a year ago and learned about walking on a treadmill while working. It had never occurred to me that there was an alternative to sitting all day at a computer. Lucky me, I say. Lucky me.

 

I fly again, and live to blog about it

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I can’t remember how long it’s been since I was on an airplane. 3 or 4 years? Last week, I left the state for the first time since we drove to Las Vegas. And it went smoothly. Too smoothly, as if the air-travel gods were luring me back to the sky.

It did help that I took an Ativan before leaving for the airport. But security was a breeze, though I did receive the usual X-ray rescan of my compressor and cold pack for my Cayston. Snowpiercer and the sequel to 300 kept my mind occupied on the flight, and I touched down in New Jersey ahead of schedule. Too smooth.

The rented O2 concentrator was at the hotel when I arrived. Smooth.

This is the O2 Concentrator to own. It's quiet as a fan and doesn't weigh as much as bulkier units. I'm looking into swapping my noisy home unit for one of these.

This is the O2 Concentrator to own. It’s quiet as a fan and doesn’t weigh as much as bulkier units. I’m looking into swapping my noisy home unit for one of these.

After a brutal week of intense 12-hour days of work launching our training event, and an episode of A fib one stressful morning, I flew home. Okay, so the A fib wasn’t very fun, but I know how to deal with it now. I told everyone I was car sick and waited for the double Ativan dose to kick in.

With the exception of some blood on the day following my return, I’ve been okay, knock on wood. I wonder if the blood had anything to do with my falling asleep on the plane and possibly destatting? Question for my doctor.

Though I didn’t cough up blood on the flight, or at my destination, I have no interest in getting on a plane anytime soon. I still hate the whole process of flying. And I only flew this time because it was summer. Flying in the winter? No thanks.

But at least this time I made it back without any stories of hospitals. That, my friends, is cause for celebration.

 

 

Giving it all to my job right now

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I’m leading part of a large training event at work right now and its sucking up all of my creative energy to complete it. And I’m working long days and putting in hours on weekends to finish all of the deliverables on time. Luckily, I’m working with a good team.

I traveled by car last week and was so tired on day 2 of the training session, I looked right at someone I’ve known for 12 years and couldn’t remember his name. Just blanked. Name gone. Later, I had to Google, “fatigue and memory loss.” Yep, it can happen.

My memory improved with a good night of sleep. But why I was so tired was something most of my co-workers didn’t understand. What they didn’t know was when I go back to the hotel, I have 90 minutes of treatments to complete before sleeping. Then I get to wake up early in the morning to knock out another 90 minutes. So, working long hours and having CF is a bad mix on the road and equals limited sleep.

And I have more travel coming soon – on a plane.

I don’t remember the last time I was on a plane. It must have been at least three or four years ago. I’m going to give it a try again for this project that has consumed much of my time these days. I’m not looking forward to flying, and a small nugget of fear in my head grows larger as the day approaches. I will self-medicate for the flight.

One worry I have is that I now use O2 at night. I need to find a place that rents O2 generators in the other city. My center couldn’t help. So, I’m going to call the CF center where I’m going to ask if they can help.

That’s it for now. I miss blogging. But there are bills to pay and a 12-year old to send to college. No rest for the weary.

Working in the USA defies logic sometimes

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I haven’t been blogging due to work. But that’s good and bad.

It’s good because we have a new manager who doesn’t require the bandwidth of our old one. I’m no longer supporting a nice guy, but Senator-type, with ADHD. So now I can do the job I’m paid to do and not admin support prepping the manager. In return, I’ve been doing a lot more writing and creative work.

Happiness.

On the flip side, I work at the speed of light. I’m the Pizza Hut Express of creative training development right now. Churn and burn. Thus, I’m doing my part to keep unemployment in the USA high. That’s a joke on my part, but not far from the truth.

How are USA companies reporting record profits right now?

Well it’s not because they’re hiring the number of people they need to get the work done.

My least favorite management motivation pep talk: We’ve got to do more with less. The business schools need to can the class where future managers learn this motivation-killing tool.

Bring in the book that got me riled up.

Overwhelmed: work, love, and play when no one has the time, by Brigid Schulte.

It’s a great book, but I must admit it feels like it’s meant for the smarter sex.

This feels like an important book and a must-read for my daughter when she gets older.

This feels like an important book and a must-read for my daughter when she gets older.

If you’re a guy, don’t read it because you’ll probably feel guilty about how much work your wife and the mother of your children does. I gained a much better awareness of this, and I’m now picking up my socks and putting them in the laundry basket. I cleaned out a cabinet and vacuumed yesterday.

However, beyond the facts showing how great women are, which I 100% agree with, there are other facts in the book about how we work here in the USA – longer hours, but not as productive per hour as many European countries, very few worker rights, fewer rights for parents, health care challenges, limited flex time, etc.

It’s an eye-opening read about the way we work in this country, which so many like to tout as the best in the world. The numbers just don’t support that anymore. We’re not as progressive as we once were. Heaven forbid we pay someone a minimum wage they can live on. Sad.

I’m not here to criticize the USA. It’s our corporations and rich politicians pulling the strings. I just hate the illogical idea of supplementing companies that pay a low wage to workers with government funding to help these people survive. And I don’t like the manipulation of the exempt worker who is paid for 40 hours but works far more than that every week, helping to keep companies from having to hire more workers. It doesn’t make sense to me.

Work/life balance. Hmm.

Or, are we living in the Matrix? Have we become interchangeable batteries without rights?

Those are the questions that keep me up at night.

 

 

 

Hernia Surgery – Part Two

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I was rabid when they wheeled me to a non CF-Floor. Tasmanian Devil, I was.

The “normal-people” floor meant I’d be forced to explain my meds and condition to a nursing staff lacking in CF experience, which is a pain worse than surgery. It’s one thing to be a mutant, another to have to explain it to others.

And being admitted late on a Friday night? God, no, not the back-up staff.

Having not anticipated the overnight stay, I was missing my med list and usual survival pack of enzymes, nebulizers, and other meds it takes the hospital a couple of days to get me.

The Universe spoke: “Let’s see how you do when I drop you into the middle of Hell with just an iPad mini, five bucks in your pocket, and a catheter in your bladder. Have fun.”

Survival mode entered. Not because I thought the hospital would kill me overnight, but because of what it might give me in the short time I was there. Or, what I like to call a medical “parting gift,” like C Diff or a blood clot. Or a new exotic bacteria. Or a virus. MERS anyone?

My mind swirled with the possibilities of what an open, oozing wound would earn me this time. Flesh-eating bacteria? Staph? MRSA?

Nurse, can you get me some scuba gear, a wet suit, and a spear gun, please?

Early that morning, they removed the catheter and gave me a window of six hours to urinate. If I didn’t, my pal Foley was going back in. Hell no.

I started drinking bottle after bottle of water, one after another, filling up. If another catheter was in my future, I was going to make sure that when they tapped me it was a Yellowstone geyser, not a trickle.

Luckily, the floodgate opened within the first hour and opened and opened and opened again, making me regret drinking so much.

Then it took another 5 hours to discharge me because once the hospital has me in its clutches, it doesn’t want to let me go. I’m one of its favorite patients.

*      *      *

It’s been two weeks since the surgery. I went back to work on the Monday after the surgery and learned why some people get a week off, which I declined. It was a grind of a week and each afternoon ended in a face-down nap.

I think I tore the outer incision a bit because it’s been oozing and I have to place gauze over it daily. Fingers crossed that it doesn’t become an infection.

I’ve been very happy since the surgery. And it’s not because of the giant supply of painkillers they gifted me – I’ve taken two. No, it’s something else.

It’s shockingly clear image of the man across from me who had cancer and a blood pressure so low I can’t believe he was living. And the person next to me who had cancer. And the woman in the waiting room whose husband had cancer.

I’ve been really happy just to be alive since then. Every day is a gift. Sometimes the Universe reminds me of that in the strangest of ways. But the signs are always there.

 

 

Hernia surgery – part one

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The least exciting picture I've ever placed on my blog. Cork in a swollen tummy.

The least exciting picture I’ve ever placed on my blog. I call it, Cork in a blowhole. (I forget why the doctor in training wrote something on my stomach before the surgery. It’s not like I have a left and right belly button.)

Hernia surgery rule I didn’t know: you must be able to pee before they’ll let you go home.

Surprise.

So, for about four hours or so – time was a blur – I walked the floor of post-op, now completely void of other patients, and visited bathroom after bathroom, where I’d turn on the hot and cold water in the sink, then flush the toilet over and over, and hope to wake my bladder from its medicine-induced slumber.

At one point, while looking down at my left hospital-sock covered feet, a large puddle of water approached. The sink had overflowed and filled the bathroom. Oops. I blame the painkiller shot they gave me after surgery.

Hanging over me was the threat of a catheter insertion and overnight stay in the hospital.

Thus, with the clock ticking and the staff filtering out for their weekends away from patients with cancer and other surgery-required aliments, which made me once again realize how thin the thread of life and good health is, I drank bottles of water and juice boxes and talked to my bladder as if it were God, begging it to come through in the clutch and save me from having a rubber hose inserted in my penis.

Luckily, I had a heroic nurse who stayed after hours to give me a fighting chance. But despite that good luck, there was the opposite, like the fear tactics a less sympathetic nurse thought would help, like telling me how thick the rubber hose of the catheter was, and the giant poster in the bathroom stating how catheters are one of the leading causes of hospital infections.

In the end, I could not pee.

Urine fail.

Commercial Break: [Announcer Voiceover] “Say “hello” to Foley, the rubber snake plumbing pal you’ll wish you never met. He’ll enter what you always thought was a one-way pipe. You’re going to wish you were still asleep on the operating table because no amount of lube is going to help you ignore Foley’s presence in your most sensitive of body parts. You’ll scream like a baby every inch of the way.”

Yes, put down “Foley insertion” on my list of least favorite medical procedures – and the one that made me cry out loud.

But, best of all, thanks to my buddy Foley, I earned a night in the hospital, my favorite place in the entire world.

Thanks, Foley.

(Foley: You’re welcome, Jackass.)

To be continued.