Broccoli, Wasabi. Wasabi, Broccoli. Cabbage, Wasabi. Wasabi, Cabbage.

[This is not a medical advice site. But webmd.com is, and where you should go for medical information, please. This is a “guy wearing a bag on his head thinking McGriddles cure everything” site. Can you say “nutty biscuit buns”?  I knew you could. And you liked saying those words, didn’t you?]

I’ve written about my love of broccoli and cabbage and how they’ve benefited my digestion. Gots to have my daily dose of Isothiocyanates or papa turns into a grouchy bathroom bear. But is it the Isothiocyanates or just the benefit of eating more vegetables that helps my gut?

Here’s what I do know: I used to have stomach problems, or the mystery ailment known as Irritable Bowel Syndrome, which is a terrible name and one doctors use for stomach problems they can’t’ figure out. (In a Foghorn Leghorn voice: Yes, sir, yes, sir, that there’s something irritating and in your bowels. That’s right. And it’s a Syndrome. I am, I say, I am gonna call it Irritable Bowel Syndrome. Catchy sounding, ain’t it?)

Then, I started eating broccoli and cabbage and voila, much better and stable. And fewer visits to the stomach doctor. So, I’ve continued to this day. Sometimes,  I’ll eat something different like bad deli meat and things go sideways, but I recover much faster with the power of my gut pals, Mr. Broccoli and Mr. Cabbage, which were the original names of the characters in Reservoir Dogs by Quinton Tarantino, but got changed after the Vegetable Growers of America complained it showed broccoli and cabbage as ruthless killers and no one would want to eat them anymore.

Cough, cough. Bullshit.

Boys, give her some space before she gives you an ass-kicking you'll never forget

And now the boys have a new pal: Ms. Wasabi. Yep, I’ve added her to the mix and she packs a punch like Uma Thurman’s character in Kill Bill. I eat it to the point my eyes water and my nose burns. Occasionally,  I can’t breathe for a second and have to grab the table. Oh, Ms. Wasabi, why do you hurt me so?

Today, I dipped peanut-butter pretzel crackers in it. I’ve also mixed it in tea, which I don’t recommend, as it gets lumpy and doesn’t taste very good and just plain looks bad in the teacup.Think layer of barf.

The strange part is that my breathing seems pretty good this week. Really good. Wasabi? It does have horseradish in it, which is in the Isothiocyanate family. Very interesting. It makes for quite the ITC cocktail with Mr. B and Mr. C. Or, it could be my imagination. And, as many of us know, sometimes that’s all it takes to make a positive difference.

Stay healthy.

[Note: The original title of this post was “Isothiocyanate Threesome.” But after reading Lizi’s excellent post about search engines and key words, I thought it best to change it.]

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.

Monday Musings – Lawyers, CF Doctors and the Truth

[This is an entertainment site. No medical advice is given. All readers are responsible for their own actions. All medical decisions are best made with a doctor’s advice.]

I read an article recently about a murder trial in New York. The author described the evidence in the trial as something each side, prosecution and defense, turns into a narrative they tell to the jury. The jury believes the side that tells the most compelling story with the evidence they have. I’m not doing justice to the eloquent way she described it, but that’s it in a nutshell.

Today I ask the following question: In creating a narrative from evidence, is what lawyers do that different from what CF doctors do?

Read the forums on cysticfibrosis.com. Different treatment methods fill the virtual pages, causing confusion and discussion. Some doctors prescribe steroids; some don’t. Some prescribe Pulmozyme before HTS; some don’t. Some prescribe Cipro three times a day; some don’t. You get the idea.

The Truth?

Remember Jack Nicholson in A Few Good Men – “You can’t handle the truth.” You’re right, Jack, I can’t. That’s because, as I’ve written before, the truth does not equal fact. Truth is a myth, often overrated and sometimes a lie. To tell you the truth, it is one’s interpretation of the evidence. When a witness offers to tell the truth and nothing but the truth, they do, but it doesn’t mean they were accurate. Witness accounts are often proven incorrect.

@CFFatboy wrote an excellent post last week describing how his doctor was going to put him on Cayston every day with no off-months and with alternating months of colistin. Cayston everyday? Not one month on, one month off? My doctor coughed up a hairball with I suggested two inhaled meds at once, even though my logic was that we do it with IV meds, why not inhaled? I’m not saying one method is right or wrong. It just shows the challenge of deciphering competing CF narratives.

If I had a dozen CF doctors taking care of me, I could cherry pick from their treatment plans and create one of my own.

Treatments for this disease vary to the same degree our genetic defects do. Each doctor works from their evidence: the medical papers, case studies and patient files.  From that, he or she creates a treatment plan. And, many times they come up with something based on . . . well, who knows sometimes.

Many years ago, I told my doctor that I felt really good taking Ibuprofen. He said he didn’t think it would make any difference but if I liked it “what could it hurt?” which is “doctor talk” for “you have CF so WTF – live it up.”  Now there is a page on the CF Foundation web site about Ibuprofen as a possible treatment for CF. I asked him about low testosterone. He said mine was probably fine and no supplementation was needed. Look what we know about cystic fibrosis and testosterone levels now. Treatment may be required.

As patients, we may be ahead of a trend because we have Internet access to the evidence, too. With it, we can create our own narrative or truth. And many times we discover it sooner than our doctor who hasn’t read what we’ve read or lived what we have lived.

And though I don’t recommend any therapies here, I see that situation developing now with BITC. Once again a potential treatment may be ahead of the curve. What is the truth about this chemical and its potential as a CF treatment? I don’t know. Once I figure out how to get some, I’ll discover what my truth is, so help me God.

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PFTs, Body Blows and Advice from the Fox

Sometimes a CF punch doesn’t knock me down.  Sometimes its a good punch to the body and takes my breath away,  but I regroup.

That’s why I hate PFTs.

Today, at my post hemoptysis appointment, I took a punch. Not a terrible punch, but I felt it.  PFTs were down a bit but not terrible. Not enough to warrant a jail sentence.

The psychology is tough though: Can I regain the lost lung function?

What would the fox do?  I ask.  “Benzyl Isothiocyanates,” says the fox.

Oh, well. I’m still in the fight. That’s the good news. Not sure what I’m going to do about the hemoptysis in the long run. Got the “1% chance embolization can cut off blood supply to your spinal cord” speech.

Wet my pants and went home. Ate my broccoli and slaw and strategized my next punch.

Monday Musings – Looking back in the future

Someone once thought it was a good idea to hire me as a junior high English/literature teacher. LOL. I still can’t believe it but I thank them for their trust.

The good news is that I don’t think I harmed any young minds. I thought I was great teacher.  Now, in hindsight, I’d say I was good at best with potential. Not great.

I enjoyed teaching, but gave it up because of the parents and pay. The kids were great and getting paid to discuss language was pretty cool. However, dealing with some parents reminded me too much of my “eating sh** days” in retail sales. Add that to the small paycheck and I gave it up.

During my days teaching I made exactly one comment I thought was interesting – one that is also relevant to cystic fibrosis.

Here it is: What is happening in the present day that we will regret in the future? Past examples: slavery, the red scare and the internment of Japanese. How did these happen?

And that’s my question today: When we look back years from now, and hopefully we’ll all be alive to do just that, what will we regret about cystic fibrosis in the future? The fact we lost so many before the cure was found comes immediately to mind.

Other thoughts: Why didn’t scientists know sooner that cruciferous vegetables held those secrets? Why did we bother taking a certain medicine?

Or will be there be no regrets in the future?

That’s what I’m thinking about tonight. What do you think?

Genie in a Bottle? No, Broccoli in a Bottle

Thanks to a twitter friend who told me about vegetable tablets, I discovered my dream supplement – broccoli in a bottle.

Found these little goodies at a health food store today and started taking them with real broccoli tonight.

Soon, I will fill large vats with broccoli and stamp them like grapes into a green paste, which I shall rub all over my body.  Then the Isothiocyanates will overwhelm my cf and I’ll be cured.  Nice.

“Say hello to my little friends – broccoli and coleslaw”

If you read my earlier post on broccoli, then you know I’ve been shoveling in tons of the stuff.  I also added cole slaw for the cabbage and occasionally cauliflower.  Soon, I will find broccoli sprouts and start eating those, too.

All in the name of searching out sharktank.org’s mysterious Isothiocyanates.  That’s why I’m eating cruciferous vegetables.

I won’t repeat my earlier post.  But here’s the latest. After 40 plus years of taking enzymes, first the powdered form with applesauce when I was a child and now capsules, I can’t find the correct dosage. I’m constipated a lot and my digestion and the results of it have been smaller and perfect.

Last week on a business trip, I forgot to refill my enzymes for dinner and had only three for a large meal.  I thought I would pay the price, but all was fine.

I don’t get it and don’t know if it has anything to do with the Isothiocyanates.  I’m not used to this level of good digestion over such a long period of time.

I’ll be calling my CF Center this week to discuss enzyme dosages.  It’s been a long time since I had that conversation.