Those fleeting moments of feeling well

Today I read a very good post by Mandi at runsickboyrun.com.

http://runsickboyrun.blogspot.com/2010/07/you-feel-like-what.html

She does some nice detective work figuring out what’s it like to not feel well with CF. For me, she touches upon one of the hardest parts of having cystic fibrosis – just generally feeling under the weather a lot. It would be much easier if I felt great for three or four months after a tune-up. Then, bang, I start feeling bad and in I go for a tune-up. Now that I’m older, the stretches between I.V.s test me to a greater degree and are battles to see how long I can stay well and out of the hospital. And not cough up blood – my favorite CF event.

A few weeks ago, my coughing production quadrupled, which is the sign that I’m getting ready for another tune-up. I know the pattern well by now. It’s when I have days I lack energy, have strange chest pains and SOB, and feel like giving up. It’s made worse by the fact I have grind out work most days. But I hate going in the hospital more, though I sometimes think it would be nice to live there.

As I’ve gotten older, CF is complicated by other aging issues. I don’t know about anyone reading this and their experience, but when I don’t feel well the first place I look is CF – it gets blamed right away, villain that it is. However, it hasn’t been the cause of my health problems every time.

It’s a challenge to get my CF doctor, who is excellent at what he does, to look beyond CF. When I’m in the hospital or at clinic and it feels like I have more than an exacerbation, I have a hard time describing why I don’t feel well and the symptoms. This makes it harder for the doctors to comprehend. They think I’m crazy.

I’m embarrassed to say what illnesses I’ve thought I’ve had in the past. However, I have called a few right, one being a wheat intolerance. I thought it was CF causing the madness, but it was because of my diet and wheat. Once I reduced my wheat intake by 90 percent the symptoms started disappearing. I did rub in the fact at clinic that hell froze over and I was correct for once – lucky guess?

I haven’t been feeling well most days for awhile now, as usual, but I can’t blame wheat this time. It’s something else, and I can’t get it off of my mind.

Here’s how my thought process goes most days: Am I taking too much magnesium? Is it the chocolate? Testosterone? Is it my stomach or my heart? They said my heart was okay. Why did I get shoulder pains yesterday and some chest discomfort? What caused the bloating? Why am I getting shortness of breath lately? I’m back on Cayston. Is it not working? My peak flow is good. Pulseox down 1 percent. Is it a panic attack? I don’t feel anxious. How can I describe this to the doctor? Is it time to go to the gun store? Could I be eating something that affects my heart?

And it goes on and on like that for days, weeks, months.

Yes, I am insane.

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Random Notes and Photos Related to Past Posts

The front page of today’s L.A Times includes a section and articles under the heading, “The Future of Reading.”

http://www.latimes.com/business/la-fiw-0718-reading-20100718,0,2712081.story

Here’s an L.A. Times link with a podcast discussion of books and how they are evolving thanks to technology.

http://latimesblogs.latimes.com/readers/2010/07/future-of-reading-publishing-ereader.html

I include these links because of my recent post on the iPad. There is a lot of discussion going on right now regarding how technology will evolve the book, and whether eReaders will kill the physical book itself. Books have been around 100’s of years and have outlasted many past claims of their death. Yet, it’s exciting to witness this latest major transformation. My daughter may miss most of it because she may not remember what it was like before books transformed into digital files, though she’ll see plenty of reminders in the house.

Here are some random photos I’ve taken related to past posts.

Blind Pig on a Stick

This pink pig sits on a pole in Topanga Canyon. It must have been the figure head for a business at some point, though no business remains, or I missed it if it does. Now the pig stands guard as an oddity and mystery of old Topanga.

Fly little pig, fly

I decided to free the pig from its painful perch atop the pole. Thank you, Photoshop. I hope the lucky pig finds a new home now that it can fly away.

McDairy Queen or McDonalds?

When I saw the banner for smoothies at McDonald’s I almost crashed my car. I have yet to find out the ingredients and caloric count of these, but I suspect a plot of some kind. Healthy smoothies at McDonalds? Hmm, why am I suspicious?

Perhaps I am suspicious because “McDonald’s” isn’t printed on any of the advertising. Check out their web page and you’ll notice the use of “McDonald’s” is downplayed. “McCafe” appears more often. Interesting. Name change in the works?

Why do I feel like ordering a Frappe?

I believe subliminal advertising works. I’m not sure if this qualifies as subliminal, but it’s either brilliant marketing or overkill. How can you get through the line without noticing these on a conscious or unconscious level? The drinks look more tempting than anything else you might eat in your day. Let’s just eat desert all day long. No wonder my daughter wants treats all the time – the world works her over with tasty images of high caloric treats. Who can resist?

That’s it for today.

Stay well.

Saturday Funhouse – My Ideal Hospital Room

[Adult language]

My good pal @seanset, http://seanset.posterous.com/, wrote a comment here moaning and groaning about me not writing a Saturday Funhouse for awhile. How the hell did that happen?  Thanks, mate, for reminding me. Here you go. This one’s for you. And yes, I know it’s Sunday Funhouse where you live.

My Ideal Hospital Room

No jumpers, please. The first thing I’d add to my room is a balcony. I’d like fresh air each day without having to gear up with a mask and gloves and endure the fearful looks from people in the elevator (yes, idiot person who moved to the back, as if that will really help, I have the Bubonic plague, but they let me roam the hospital to drive up revenues with fresh patients).

Each morning I want to pop out of bed, I.V in tow, and take three steps to the great outdoors, yelling: Hello, World, I’m still here, ha ha ha ha ha ha, the joke’s on you.

Imagine cooking outside your hospital room. Rocking. How do you like your steak cooked, Fox?

How nice would it be to sit on the balcony in the morning reading while doing treatments? I could wave to my fellow CFers on their balconies. We could have a contest to see who could make the funniest voice with the vest turned to max. Then we could see who could spit farther, which might be the reason they don’t have hospital balconies in the first place. Not exactly the image the hospital wants to promote with a bunch of us sitting in our underwear spitting on the roof or gardens below.

Imagine people driving up to the hospital watching patients on the balconies doing nebs. Might be too much for them to take. Not us, cause we’ve been to places no one should have to go. So there. Roll up your windows when you drive by, people. BTW, I’d hang some laundry on the railing just to give it that old apartment-building look. And I want the BBQ in the picture.

You can’t make me go in there. I don’t take showers in the hospital. I look at that dark, nasty chamber and connect it to the thought of how lazy the cleaning staff can be. You’d need a team of football players to force me in there (or two drunk Victoria’s Secret supermodels). The shower is bacteria heaven.

Let's torch some bacteria, friends.

I read that some gas stations, or petrol stations in England (you’re welcome for that translation, Sean), have self-cleaning bathrooms. Perfect. That’s how I want my hospital bathroom to work. I want to be able to press a button and watch the entire bathroom sprayed down in bleach. Then I want flames to light it up like the “Backdraft” tour at Universal Studios, killing everything the bleach missed.

Finally, I want test swabs done to make sure nothing is living in there that I don’t want living in me. After all of that, I’ll take my shower with confidence. Girls, show me that pose from page 27 again.

Trying living in the Material Girl’s laundry basket: I want a room bigger than Madonna’s smallest walk-in closet. It’s amazing what a difference an extra 20 square-feet makes when it comes to your mood and health, and where you put all of your shoes if you’re a woman. How about designing a CF room that doesn’t make me feel like a caged animal gone mad during two weeks in the hole?

Come on, hospital bed, let’s do the wave. Have you ever awakened covered in sweat because of the plastic hospital mattress? Plastic doesn’t make the best material for temperature control. However, and this is true, when I was 16 I got a waterbed. And it rocked – and rolled. It was AWESOME to sleep on. It had a plastic mattress with temperature control and heated water. That was the trick. In Winter I was warm and cozy and could sleep with only the top sheet of my Spiderman bedding.

Now this is a waterbed fit for a hospital

Now as there are a ton of needles in hospitals, waterbeds may not be the best idea. Can you imagine pressing the “I want my nurse now button and saying, “my water bed just popped. Oh, and can you bring in some towels and fresh scrubs because my wife and I are soaking wet.”

Let’s hang in Unknown’s room. I cannot tell you how many times I have come close to going “rock star” on the crappy TV with no good channels and fuzzy reception. I came this close to ripping it off the bracket at Cedars-Sinai once and tossing it out the window. Had I been a rock star, they would have just billed me. If I had done it, I would have been fighting back the cons in the L.A. Jail. So, for us time-share hospital patients, let’s load up the room with the finest entertainment center available.

I want a 52-inch HD, 3D flatscreen with every f***ing channel in the world. That’s right, in the world. I’ll even watch those crazy-ass soap operas from Brazil. I won’t understand what they’re saying, and won’t care because everyone looks tan and pretty.

I should have taken a photo of the remote last time I was in. Here's one that looks and functions just like it.

Don’t forget the sound system. I need to block out anyone yelling “nurse, nurse” from the other room. I want people to think there’s an earthquake and it sounds a lot like the battle scene in Avatar.

Lastly, give me a remote control that selects channels up and down and that doesn’t make me want to inject Drano in my IV because I just passed the channel I wanted and now I have to go through 20 crappy channels to get back to the one I passed. Whew, that’s a mouthful.

To the joker who invented that piece of shit remote, I’m still looking for you and will one day take the reverse gear out of your car. They’ll be no backing up for you after that.

Some of us work for a living. I’ve said this many times – give me a desk and chair. I work when I’m in the hospital. This ain’t no holiday, people. I have a family to feed and insurance to keep. Help me keep it, hospital room designers. That way I can come back and use my insurance again, as opposed to doing my IVs while pushing a shopping cart on the streets of downtown Los Angeles.

Design a desk and have it pull out of the wall like a Murphy Bed or something. Get with the program of the digital world we live in – the one that doesn’t go away just because you’re in the hospital.

Here’s one from Fox: Thanks, Unknown, for giving me one, you generous bastard. Fox here. Look, my fox friends, nurses have heard every line you’ll ever come up with. There is nothing you can say with your golden tongue that is going to catch one of these intelligent, caring women. Even though they wear pajamas to work, which is cool, you have zero chance of getting them to change into something more comfortable – they’re already comfortable in their nurse PJ’s and Crocs. So, you have to trick them in a different, more subtle way.

This is what I look like without the bag over my head

The water bed is a great first step. Nurses love water beds and will want to test it. When she gets on, bump up the wave action and wait for the fun to begin. You say: “Look who fell into my arms. Que romantico. My name is Fox, and I come from an exotic land called Brazil. I will kiss you now.”

Second, and this is the bait of all bait, put a stripper pole in your room. Always say it’s for exercise and the docs won’t barf all over the idea. When the doc is gone, the patient will play. No nurse can resist a pole in the room (except the one in Louisiana who’s going to write Unknown a nasty comment for this post).

Now gents,  you have to stay cool and subtle and say it like this: “What’s a little spin around the pole going to hurt? It’s a great way to get over the barf storm Mr. Wilson just coughed up all over his room?” Be encouraging. “There you go. That’s it. I’ll just be sitting here reading on my iPad. You go ahead and get crazy. Oh, yeah. Wait, let me crank the AC/DC on this awesome sound system. That’s it. Did they teach you that in college.” [the rest of Fox’s post was censored because, well, you can only imagine what happened next – out came the beer and dollar bills. Then all hell broke loose when the nurse twins came in. Oh, my, Fox. What am I going to do with you?]

Last words . . .

I’ll be playing the lottery tonight, hoping I win big and can have my hospital build a wing just for us. We’ll party like it’s our last and live the rock star lifestyle with IV’s in our arms, a neb in our mouths and a cold beer in our hand. It will be the hospital of choice for those of us who value partying. Let’s drink shots from our Flutters. What the worst that can happen? We’re in the hospital, damn it. Code Yellow, drunk fox peeing off the balcony again.

Live the high-rise life.

I Heart My iPad

After three months of torturing myself about whether to buy an iPad – tweeting my agony to my friends – I purchased one. And it’s better than I ever expected. It’s a game changer when it comes to how we use computers.

Now I can wear an electronic bag over my ugly face

The iPad transforms the Internet experience into a book you hold in your hands while sitting in your most comfortable easy chair, or on the couch, or outdoors at night in a hammock. Its ergonomics when reading Internet articles and digital books blow away a laptop’s weight, size and physical design.

I can place the iPad in more positions due to its design than I can a laptop. And it boots up in an instant, which is a nice bonus when you want to check something quickly, like Twitter, your email or a web site. (Why can’t desktop PCs and laptops boot up like this?)

Then there is the bonus of all bonuses for me: reading digital books.

I don’t like the feel of rough paper e.g. grocery bags. If I were a captured spy, wrap me in a few Von’s paper grocery bags and all the Agency’s secrets will be spilled. I’ll talk, just don’t rub that paper bag on my chest again. I have never liked the feel of book paper either, or holding a book and trying to get comfortable with it for a long period of time.

Reading books on the iPad is my dream. I can read an iPad one-handed by propping it against something. I can read while eating without pages flipping over. I can read while using two hands to do my flutter. I love the (almost) hands-free reading. I only have to tap the screen to turn the page. And they turn fast.

A blog post within a blog post

When I go to jail next time, my iPad will make the terrible experience of being locked up better. I won’t have to sit in a crappy hospital chair with my knees hitting the bed’s framework, my laptop sitting on the bed. I will be able to kick back on the crappy plastic bed and tweet and read blogs and books, and watch movies streamed from Netflix – all with one device – awesome.

I waited three months to buy an iPad because I wanted to teach my daughter a lesson about not getting caught up in the hype of being the first to own new gadgets. (Now the lesson is to wait at least three months before getting caught up in the hype.) However, I did research it and talk to friends before buying it.

And with those conversations in mind and some hands-on time with it, I knew my daughter and I would get a lot of use out of it for a long time. I did resort to using the “Life is short because I have CF” excuse to help make the decision – just a tiny bit.

Other than fingerprints, which are annoying, my daughter stealing it and some software quirks, there is little downside.

I expect that one day in the future, my daughter will leave for school, but she won’t have a backpack full of heavy books hanging from her shoulders. She will have an iPad or other tablet computer in her hand. And it will contain all of her school books, notes, dreams, pictures of her parents, dogs and friends. And every book she has ever read.

I’ll stand by the door watching her skip down the walkway, love in my heart, thankful there won’t be chiropractor bills coming in a few years from her lugging 50 pounds of books each day. How nice that will be. And I’ll watch as the happy trees shake their leaves and wave and say to her, thank you, little girl, thank you. Have a great day at school with your paperless device thingy.

What a wonderful world it will be.

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The Pebble Game

“Whether you think you can or can’t, you’re right.” – Henry Ford

Who has ESP in the family? I do.

I schooled my daughter in the art of non-verbal communication last night. We played a game where she hid a glass pebble in one of her hands and asked me to identify the hand with the pebble. I went six for six until she got mad at me and quit.

At the point I was three for three, I hinted at how I was doing it by reading her eyes, facial expressions, and white knuckles around the pebble. However, revealing the magic didn’t help her fool me. And she did try to fool me by looking at the wrong hand on purpose, which told me to choose the other one.

It took awhile to get to six out of six because she threw little tantrums a couple of times and tried to fool me with no pebble in her hands, which I guessed she was doing, even though she fibbed she did have it in one hand. Then she got mad because I guessed she was fibbing.

Once she calmed down, I went through the techniques I used. I also explained to her that at the beginning of the game I said to myself  “I can do it. I can guess the correct hand each time.” I was confident of success. I also visualized in my mind being able to guess the correct hand. Zip, right over her head that last point went.

I’ve used the Henry Ford quote with her many times when she says “I can’t.” I reply, “I guess you’ll prove yourself right then,” which makes her blow a gasket. She tries to prove me wrong by doing it, which makes me the Reverse Psychology King. (It’s always good to be king of anything, even when you make up the title yourself.)

The pebble game made me think about how clairvoyant I am at guessing which hand a pebble is in but how bad I’ve been at predicting the future. In the past, I have thought, my lung function is screwed forever, or I’ll never make it off this plane alive, or my bacteria will never be sensitive again. I have been wrong so many times.

Why is it easier to visualize the worst case scenario and not the best case? I need to do a better job of practicing my own advice by saying “I can” more often. I can handle what CF has in store for me. Oh, how I’d like to prove myself right on that one. We’ll see.


Three wishes

[No medical advice is given in this post or any other post on this site. Please see disclaimer in left column.]

Last night I fantasized that I had three wishes for cystic fibrosis.

I wished for a cure for all CFer’s, our lung function and digestive issues restored to normal, and lost warriors returned to life. These wishes came to mind in a heartbeat. But as my mind soaked in the warm bliss of fantasizing that all of these could come true one day, I changed my mental game to think up more immediate and practical wishes. (There will be a cure one day.)

If only it were as easy as rubbing a bottle

So with my brain-game rules changed, I wished for the following:

1)  BITC gets tested, launched, and becomes the most effective CF treatment ever. What would be more fitting than Melanie Childers and Sharktank.org delivering the grassroots knockout punch to CF? Karmic justice at its finest. My fear here is that BITC with its great potential will take mainstream science and medical companies too long to get moving. Hello, CF Foundation or rich donors? Time to step up with some research cash and get BITC  fast-tracked, as you don’t want to say “would have, could have, should have” years from now on this potential game changer.

2) All CF clinics deliver a high-standard of care. Years ago, my clinic had really lax standards – they used a peak flow meter to test lung function. As a result, my numbers went down and I lost some of my lung function forever. In came a new, excellent team with mandatory quarterly visits, PFT testing at clinic, and I.V.s when PFTs drop 10 percent or more. I’ve read others’ blogs and discovered that some clinics sound like my old clinic and are not being aggressive in treating CF. Thank you to the CF Foundation for setting higher standards for CF Centers. My wish is for them to push harder and ensure all CFer’s get the same high level of care. Oh, yeah, how about getting trial drugs out sooner? Please.

3) Every state automatically enrolls its residents in the organ donation program. Individuals should have to opt out of the organ donor plan, not in. This would help a lot of CFer’s and others waiting for organ donations. It seems like such an obvious change and I read that some states may move in this direction. Yay. Move faster, please, as a country.

X) This one is complete fantasy. I wish CF had a physical presence and I could hunt it down and kill it. But I wouldn’t kill it right away. I would torture it. And I would have no guilt about doing so. Imagine the worst, most painful torture scenes you’ve ever seen. I would do that and more to CF and it would feel so good to make it pay for the suffering it has caused to CF’ers and their families and friends.

Those were my immediate wishes. Now all I have to do is find a genie bottle, rub it, and make my wishes. Don’t be surprised when you wake up one day in perfect health and you hear screams coming from the other room. It’s just me with an ice pick engraving names into CF’s flabby skin.

Stay well.

Letter To My Daughter – 7/11/10

Here is the actual auction picture.

Dearest,

I’m embarrassed to write that last year, while in the hospital, I watched a Barbra Streisand auction live on the Internet. I feel icky admitting it, and blame manapause and the fact they were selling old pine furniture, all too expensive for me. But something about owning one of them sounded cool, as it came with a good story.

When asked why she was selling so many prized possessions, B.S. said it was because our possession of objects is temporary. She was speeding up the process for charity. Not a mind-blowing thought, but simple, interesting and true.

So, honey, listen closely, and I speak from experience: Don’t fall in love with objects (or boys until you’re 30, which I know won’t be possible, but I can hope).

I think of all the stuff I’ve bought in my lifetime – the shirt I couldn’t live without or the expensive sneakers I had to have that eventually went in the trash or to charity. I could make a list that would unroll like a Greek scroll the length of a football field.

I have spent money and energy on garbage that provided a short-lived Red Bull jolt of happiness. Worse than that, I’ve wasted emotions and experienced anxiety on stuff I couldn’t afford but thought I had to have.

The next time you buy anything, close your eyes and picture the lifespan of that object from the moment you purchase it to its end. Are you going to use it for a long time? Will it end up hidden in a closet in two months and given to Goodwill in two years? Is there a way to buy it used, like the furniture we’ve found on craigslist?  (If you really want to see how items lose their value, look on craigslist, honey. It’s amazing and depressing what we spend our dough on and how much we pay for it.)

If you feel that your happiness depends on that object and you’ll absolutely die if you don’t get it, then walk away. Run away. It’s a losing proposition and it will never live up the hype you’ve given it. Take your time and reevaluate.

All of this stuff becomes baggage and a ball and chain. You have worry about it, lock it up at night, put an alarm on it. It gets scratched or damaged or breaks when your 8-year-old daughter drops it (sorry, you’ve been pretty good at breaking a lot of stuff over the years, especially Christmas ornaments). So, if it’s fragile, you’re going to have to worry about it twice as much.

storyofstuff.com

Know the true cost of an item. We watched Story of Stuff together. Watch it again. Cheap items from other countries aren’t cheap. They come with a long-term cost to world pollution that we don’t quite understand yet, but your generation will.

Know what is truly important in life. I wish I had had a parent to share some wisdom on this subject. It’s your family and friends that matter the most, not objects, unless of course they’re statues of me (couldn’t resist that one. Perhaps a small shrine. Joking. No shrines. How about a Play-Doh bust of me mounted on a pike in front of the house? Hmm, too gory.)

You’re on the clock. Your time is limited. Don’t worry about owning stuff. As they say, it ends up owning you. Make sure whatever you spend your money on will truly deliver happiness for the long term.  Otherwise, it’s not worth the price.

Remember, you had as much fun playing with a giant cardboard box as you did with that pricey collection of Webkinz animals. Find the boxes and save for a rainy day. Please.

Love to you and your mom.

“Oh while I live, to be the ruler of life, not a slave, to meet life as a powerful conqueror, and nothing exterior to me will ever take command of me.”

Whitman, Walt