Isolation at home

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One cold is all it takes to send me to the hospital these days. And when my daughter or my wife gets sick, it becomes a game of “stay away from daddy.” No hugs. No driving in the same car. We order take out. No eating at dinner table together. No touching cabinet handles or door knobs with a bare hand for me. My wife sleeps in a different room. The dogs pick sides at night, though they’re both rather sleep with my wife. Join the club, mutts. Join the club. What self-respecting Labrador would pass up a bed for a couch?

I’ve lived like this the past 10 days because my daughter caught a cold, then gifted it to my wife. Now I avoid both of them like we’re playing a game of tag and they’re it. I stay a minimum of 3 or 4 feet away and hope I don’t bump into a stray germ floating in the air, or stuck to a surface, waiting. It’s such an uncomfortable feeling to fight an enemy you can’t see. It creates a hyper-state of awareness in me-was that sneeze the first sign? Did that cough feel different? Am I feeling “off” today? Tick tock, tick tock.

So I wait.

How many times in the past have I thought, “I made it, I didn’t get” only to be fooled at the last minute?

I need someone to invent “germ-be-gone” glasses. They would include a powerful laser  to burn away bacteria and viruses. Now that would be awesome. Until then, I navigate the germ maze in my house and cross my fingers one of those little bastards isn’t going to latch on to me and send me to jail for two weeks. Tick tock.

 

How donald j. trump got under my skin

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Rich people who whine. Can’t stand them, especially when can buy their way out of the worry of health insurance bills, keeping their job, or paying their rent or mortgage on time. Enter fat cat donald trump. Listening to him bitch and moan all the time and bully others strikes a nerve. And the path he’s taken to riches by gorging on gold McNuggets and the misfortunes of others, burns another.

I usually don’t spend time talking about politics, but trump is different. He is billionaire trash and needs to go back to his gold-covered tower in the sky.

This is a man who blatantly lies to and cheats others, like working-class Americans. He has no regard as to how he treats these small business people. And everything about him crosses a mental line for me. He’s not Bill Gates who has now devoted his life to making the world a better place, or Mark Zuckerberg who, with his wife, is going to help improve the lives of children across the USA, and perhaps the world. trump? His foundation is a zero-employee joke he borrows from for his own self-interest. Not cool.

I’ve lost track of how many tweets I’ve written about trump lately. I know they won’t change anyone’s mind about trump-that’s not their purpose. “Cathartic release” seems like a better way to describe them. They must spring forth to cleanse the disgust from my neural pathways: pseudomonas-infected thoughts brought to the surface and released.

I just can’t believe trump is the best the republican party has to offer this country. I can’t. I really can’t.

 

Winter is coming

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Flu, colds, unnamed viruses, and hospital stays. Oxygen in public. The stress of working while hospitalized. Home IVs. Insurance deductibles and bills. Face down in bed with a fever. Shortness of breath. Lost lung function. Being uncomfortable. Telling people at work.

Yeah, winter is coming and I’m not happy about it. It’s not a matter of if I’ll go in the hospital, it’s a matter of when and how many times. And the pound of flesh it’s going to rip and claw from me.

If I had the money, I’d move my family to Australia when it’s winter in California.

Summers per year with this plan: 2

Winters: 0

Zero winters gives me goosebumps. How amazing that would be.

I wouldn’t mind winter as much if it stayed light each day until 8 p.m. I don’t like the lack of daylight. It piles on the misery when I don’t feel well, though I’m glad I don’t live Minnesota or Michigan, where snow clouds the ground and sub-zero temperatures ice your lungs. Not sure how other CFers do it.

So, winter is coming. Time to prepare mentally and combat it by enjoying every moment not spent in the hospital.

 

 

 

I have no shoes, but . . .

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I’m going to misquote a quote. I apologize to the writer, but it’s a great quote and helps me get through the day. Its source is mysterious on the web.

This is my version, “I felt sorry for myself because I had no shoes until I met a man who had no feet.”

It sounds silly writing it now, but it works like mental Valium for me. Be calm, peaceful. Be grateful for what you have. Stop your sniveling. 

The quote exposes the rolling tide of my thinking. The pull of the real world I live in-and try to keep up with-pushing against my insider’s knowledge that it can all come crashing down in a single breath.

Worry. Don’t worry. Worry. Don’t worry. 

But there’s a third POV to the quote, one buried deep inside, that makes me think to ask the man with no feet if he has any shoes I can borrow since he’s not using them anymore. Yes, that’s horrible, I know. I’m sorry.

Buried in my nature is the person who asks that question, who does whatever it takes to keep going. I can’t help it. I blame the fox.

 

2016: What goes down, might come up

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2016 is a big dog dragging me toward 2017. I’ll explain in a minute. First, some backstory.

The year didn’t start well. January, February and March, my arch-nemesis months, delivered days ripe with fresh/nasty viruses, leading to two separate hospital stays.  Bad hospital stays. Both were filled with fevers, chills, severe SOB, and raging headaches. I ate Tylenol and yogurt and worked each day, barely, waiting for my late afternoon crash and burn facedown on the plastic bed.

I spent 24 days in the hospital and 12 days on home IVs over the course of two stays, leaving with my lowest lung function and O2 readings ever. And a bloody nose from sinus surgery as a bonus.

I left the hospital sniffing O2 24/7. The CF Clinic called it a “milestone” stay, but not in a good way like you’ve reached something great in your life. I learned that milestones can work backwards, in a bad way, in the medical community. I like them the other way.

So I wore oxygen in public for the time. Me no likey. I hated it. One website compared it to any other physical limitation, like wearing a knee brace. Sorry, I didn’t see it that way and still don’t. The oxygen cannula lives on your face, for everyone to see. It’s hard to hide if you don’t want to talk about it.

I didn’t accept this O2 milestone as fact. I got lucky. I have to thank a wonderful member of the CF Clinic team for giving the right tool for the job of getting off oxygen. She gave me an Aerobika. I started using it for 3 hours a day, and the poisonous oyster scum rose from the depths of my lungs and I got better. Slowly, but better.

(The Aerobika reminds me of the Flutter, but is easier to use, and works during treatments, a real bonus of doubling up on time. End of Aerobika commercial.)

Skip ahead to July.

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We went island hopping. This is Salt Spring island with Vancouver Island in the distance.

My family and I went to Vancouver Island for 9 days and had the greatest vacation ever. Forests, ocean water, jellyfish, ferry rides, deer, snakes, one raccoon, sheep, crabs, birds and awe-inspiring dinners every night in Victoria . And high-tea at The Empress Hotel.

I felt great. I climbed city streets, stairs, hills. I went paddle boarding and zip lining. All with no to little shortness of breath.

A miracle. I’m grateful. As if I needed more proof I’m the luckiest guy in the world.

I flew on a plane with no issues, though I have to use O2 now.

Which brings me back to that big dog dragging me to 2017. I’m one bad hospital stay away from needing O2 24/7 again, perhaps permanently. It’s coming. It is. Something oxygen this way comes.

I’m milking every day and every moment until then. Summer can’t go slow enough because I know “winter is coming.” And somewhere out there is a virus waiting, lurking, ready to etch its name into my lungs.

It will happen. I’m not looking forward to it. I can’t slow the damn clock. It’s such a strange feeling knowing that beating is on the way and knowing there isn’t anything I can do to avoid it. I just have to make it through whatever happens because who knows what next summer will bring. Perhaps, something magical like this summer. I can hope.

 

Haven’t had much to say

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I’m not sure why I stopped blogging. And I’m not sure if this will be the first of many blog posts to come, or the last forever.

Or maybe I’ll start a new blog. I’ve thought about that.

I’ve been working a lot this year at the new job. It’s been over a year. Love the company, many of the people, but not all of the people. They is a clique of four people making my life there less enjoyable than it could be. It’s complicated. Regardless, as hard as its been, it has taught me a lot, and there’s value in that. Painful value, but value all the same. And personal growth.

We lost our yellow lab, Luna, this summer. Cancer. It started with a small sore on her lip, which was misdiagnosed by a vet, then grew daily – fast. I’ve never seen my wife cry as hard as she did at the vet when we put her down. Putting dogs down is a memory I could live without.

We have a new pup. A mutt we adopted. He’s part German Shepherd, Australian Shepherd, Collie, and pure happiness. That last part is the best part. He’s a happy little guy and puts smiles on our faces daily. My daughter loves him and he loves my daughter.

Luck rains down on us again.

The Universe slaps me

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I tempted fate with my last post. And fate punched back. Hard. And there was blood.

Sunday the Broncos lost; Monday I coughed up blood. What a surprise. Can I blame the Broncos for this?

I thought it was odd that I hadn’t sprung a leak in a long time. And bang, there it was. It started slowly and by Tuesday I was standing over the sink watching blood circle the drain. That night I checked into the Hospital California.

And, as a bonus, c diff infected my gut two days into my stay. Wow. Well done, Universe, well done. The 1, 2 punch I hate the most. Coughing up blood and endless amounts of sitting on a hospital toilet. It doesn’t get better than that.

I’m a human sprinkler head.

The bleeding subsided today and I will be going home soon with a DIY Home-IV kit. Nice.

I think one of the meds is causing my brain to recycle vivid memories. I close my eyes and select them like computer files. They’re so clear; I can almost smell them. I know, it’s crazy. Maybe. But the ones I like watching are of my wife when she was pregnant. Our chocolate lab across her lap next to the baby bump. Her belly sticking out beyond her pea coat as she filled her lunch bag with peanut butter pretzels. Driving to the hospital and yelling at the dogs to stop barking before dropping them off at my mother-in-law’s house. The long day of giving birth. And my daughter appearing on the scene, a black head of hair, stunning, perfect.

I have no complaints about life. It has given me more than most.

Why I stopped blogging at the end of 2014

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Superstition. That’s the one word answer. And my fear of breaking a winning streak of no CF hospital stays in 2014.

Every time I’ve been doing well in the past and gone to my blog to write it about it, the Universe has struck me down. A day later I’m coughing up blood or I get the flu and off to the hospital I go. Bang. Lighting strike because I tempted the gods of hospital stays or something.

So, like a pitcher pitching a no-hitter, I stayed quiet about the streak as the end of the year neared. No talking about my good luck, which is the first calendar year I’ve gone without IV antibiotics in . . . well, I don’t know how many years. 10 or more? Usually I’m in two or three times a year.

But not in 2014. With the exception of an overnight visit for a hernia repair, I did not see the inside of a hospital room. No CF exotic-animals floor for me in 2014.

I look back on the year in disbelief. Did that really happen? How?

Luck. And a lot of antibacterial hand gel. But mostly luck. Though I have to thank my treadmill desk and the six Chobani yogurts a day I eat. They get the assist.

So to my new pal, Luck, I thank you for a year away from IVs, nurses, doctors, RTs, X-rays, blood draws, and the general misery of being locked up in a hospital for weeks at a time.

Thank you, Luck, thank you. I’m grateful.

One month at my new job and the results are . . .

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1) A lot less email each day to deal with. This was an unexpected bonus.

2) Fewer hurdles to jump through to get work done. This killed me at my old job. Swimming up a waterfall is what it felt like to move projects forward. How many people does it take to make one decision?

3) Great people who are creative, talented and hard-working. This is similar to my old job. I did work with great people. It was the myriad processes that made it hard.

4) More time spent on work that matters = more writing of curriculum, research and proposals. No more constant rewriting of, and agonizing over, PowerPoints for the president to use one time. We called it disposable work. Or, writing on toilet paper.

5) Fewer processes, which is good and bad. There is no on-boarding manual at my new job. No roadmap or thick book of “rules not to trip over.” No one-day new hire workshop. Luckily, I feel comfortable figuring out stuff on my own. Otherwise, I would have been hosed.

So, that’s life at my new career. It doesn’t mean it’s been frustration free. Every new job comes with challenges, but I’m glad I made the move.

I haven’t blogged because I worked every day for the first three weeks to make a good first impression. But I enjoyed it. That was the best part.

I’m more engaged and the effort I give feels like it matters more. Whereas at the corporation, constant turnover at the management level meant starting over often and the complete destruction of past successes and sacrifices. Here, I think it will be different.

On the downside, my medical costs will be higher, but it seems like a small price to pay for a happier work life.

So far, so good. Luck is on my side. Knock on wood (I’m tapping on my head right now).

Major change is almost here

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I had my exit interview with HR today. I wish I could bottle up all the great things the wonderful woman said about my time at the company, especially that I’m welcome back anytime. It was a nice way to exit, but emotional. And it made me question my decision to leave.

But leave I must. And change I need. And growth in my profession.

Maybe I will return one day. I’ll be better and more knowledgeable if I do.

So, two more days to go.

I plan on starting my new job on Thursday, which I didn’t think was odd, but others have asked why I’m not taking time off. It’s not because I’m the super employee. I’m just excited to get started and to prove myself as soon as possible.

I’ll probably have to get Cobra for a month. If I don’t there could be a period of 5 to 6 days where I don’t have insurance. Hmm, in the worst season for me, Autumn, would I want to be uninsured? I think not. I can guarantee that would be the week I go to the hospital.

To be continued . . .