The Downside of Blogging

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Never listen to a fox

“You’re not who you think you are, you’re who others think you are.”

I love that quote. I think of it everyday. And it has new relevance now that I’ve put my thoughts down in a blog. There is who I think I am, and the person I am perceived to be online, on this blog. I’m not sure they are the same person.

Here’s why . . .

Today, I received an email from a friend about a post I’d written a few days ago. In it, I stated that my doctor thought I might have thyroid problems. In thinking out loud, I wrote that I thought there might be a connection between the large amounts of broccoli, cabbage and broccoli sprouts that I had been eating and my thyroid levels. I had researched it on the Internet and there were some articles on the connection of cruciferous vegetables and thyroid levels.

I was excited because I thought I had uncovered what had been ailing me for three weeks and which had driven me to the ER on a Friday afternoon.

In the hospital this week, my thyroid was fine. The doctor did tell me to stop eating the excessive amount of broccoli that I’ve been eating, as nothing in excess is good for you, and to make sure it was cooked to ensure the thyroid limiting part got destroyed. (Do not interpret this paragraph as medical advice.)

My friend pointed out that she had people who were concerned because of what they read and their consumption of broccoli sprouts and thyroid issues. She asked me to post something more on the subject and clarify.

I was torn on what to do. First, I’m very grateful for anyone who shows up at this blog and reads it. We all have limited time in our lives and the fact someone reads what I write, well, I don’t take that lightly. I care about the people who visit.

However, and I think I’ve said this before and state it in the disclaimer, this is an entertainment site, arguably, depending on your taste in humor. It is NOT a site where one should look to find medical advice.

I think out loud a lot and share what is going on in my life as it is happening and in the heat of the battle. I never give advice, unless it is by accident, which it seems, in this case, it was.

I have cystic fibrosis and feel the stress of trying to stay alive, maintain my health and heath insurance and work in a high-stress job in a cut-throat environment where I have to perform at a high level to maintain my ability to work from my home and support my family. It is a tenuous existence.

I constantly feel the walls closing in on me. And, yes, there are times when I feel like giving up and I share those moments on this site. I worry a lot, but this site allows me to blow off steam.

So, again, I’m torn. I feel bad that anything I wrote would cause anyone to be concerned or afraid. That is not the intent of this site. I removed that part of the original post.

I know I will repeat this type of situation in the future and write something that someone takes too seriously. Please don’t. Remember the source. My only expertise is in insanity. And, I am barely hanging on to what modicum of sanity I have left these days. There is no combination of symptoms I can type into Google and not get the answer I’m looking for to confirm my own diagnosis.

The best source of information on any medical condition is your doctor. That is one of the few times you’ll ever hear me offer anything close to advice.

This experience has also made me rethink posting anything on my upcoming experience with BITC. I don’t need the stress of trying to walk the fine line of stating what I’m going through and having someone follow in my footsteps. Nor do I want to receive another email that someone is afraid. I feel sad I can’t share it now.

This situation reminds me of how those of us with cystic fibrosis search for anything that can help us, and the position it puts each of us in to become our own doctors. This is not a site to find that type of information. Clearly, some CF bloggers relish the role of advising others with cystic fibrosis. I admire and respect them. After all of these years, I have learned how much I don’t know and to keep quiet. Or at least I thought I did.

I post this post due to the great respect I have for my friend and readers. And the support I received this week while I was in the hospital made me get choked up. I truly appreciate the good wishes from wonderful people fighting CF or with children fighting CF. Respect to all of you.

This will be, most likely, the last time I pull something I wrote and write a post like this. I feel like everyone has been warned more than once about the following:

Crazy person under extreme pressure at the helm. Consult your doctor regarding any medical decisions or advice.

This is one of those situations when I wish I had told my wife about the blog. I’d like her advice, but I know what she’d tell me: “Take it down. Take the whole thing down.”

Stay well.

22 thoughts on “The Downside of Blogging

  1. I think that people should avoid taking seriously any posts here that include the below words:

    broccoli, nurses, fox, bunny, fury, fuzzy, fuck, fucking, torture, fucking torture, beer, cabbage, mcgriddle.

    Thank you. This has been a public service announcement on behalf of anonymous CF bloggies.

    -Cystic Gal

    • OMG,

      You have a mouth like someone waiting for new lungs. 🙂 As the very least, your mouth is worse than mine. But that’s what I like about you. We should write a joint post that is really nasty and full of language like that. Of course, we’ll have to post it on your site because mine is G rated.

      UC

  2. Share away. Let scared people be scared. Let paranoid people be paranoid. This is the Internet and people need to figure out what is medical advice and what is personal experience or… I’ll just stop there.

    I simply took your comments on eating that much broccoli as insane and moved on and decided to not do so myself. I eat it, but I don’t eat any more of it than any other veggie. I think we all need to make those decisions – PLUS you do have the disclaimer in the sidebar.

    Bottom line in both of our cases should prevail, though: listen to our wives. I just finished a post that I’m not sure will still be there after I wake up in the morning in Beautiful doesn’t like it.

    • CF Fatboy,

      Do you want to know the kicker? I just found out that one of the people who read my original post actually misread it. They read into my comments more than ever should have been read into it. Un-fi’ing-believable. One day . . . if I get super powers, I won’t be Superman, I’ll be the Superman who seeks revenge.

      I read your new post. Why would Beautiful object? I thought it was excellent. You revealed some very personal details about yourself and the way you think. My bet is that she doesn’t ask you to pull it. Is is who you are.

      Thanks for the comment, as always.

      UC

      • I was right. She thought it was too disjointed to follow and asked if I was asleep when I wrote it. “It’s not your writing – rewrite it.” I seem to have very high wifular standards now that I have that diploma coming in the mail.

      • Listen to the wife. She seems like a good editor. I don’t know about mine. There are times with the some of the stuff I’m writing that I think she would want to put the brakes on it. I already to that to some extent, believe it or not. I don’t want to have to worry about how far I go. Otherwise, it may not be fun anymore.

    • You make me smile. Thank you for that. I’ll send you a check. 🙂 Even though you love the Saints, I still think you’re swell. 🙂 Please move to L.A. and work at my hospital.

  3. *Cue sappy music & over exaggerated emotions*

    You can’t change the way you post. Seriously. I’ve been battling CF with my daughter for a whole year now; and there have been countless nights, like tonight, when I want to bang my head upon this fine keyboard until I have nothing left to give the world.

    It’s hard fighting this disease, and insurance companies, hospitals, Doctors, state agencies (which by the way, I discovered this week, exactly why they have security guards in those places…if there wouldn’t have been one, I would’ve hopped over the desk, and made this case workers head, my permanent paper weight) *end sappy music*….and blah, blah, blah…we’ve all heard it all a million times….

    My point, is something that we all know….CF fucking sucks. I literally can’t take it some nights, and I’m usually all alone when it hits. I found your blog a month ago, and with the exception of the past week, I literally don’t go a day without checking it several times. The comedic relief, and just knowing that someone (or in this case, an unkown and a fox) is walking around with their finger in the air toward this damn disease, is really what keeps me going some nights. I can literally feel like I’m ready to just give up, but I’ll stumble into one of your posts, and feel like I could whoop CF’s mortal ass, like some super jedi ninja.

    Don’t change em, or I’ll crack (as if I already haven’t)!

    My follow-up comments include, but are not limited too:

    Is it weird that I will read your posts in one voice in my head; and When Fox comes in, switch to a sadistic, smooth criminal sounding one? Anyone else do that?…

    And

    I agree with Fatboy. If someone doesn’t have the intuition to know that this blog is coming from a point of insanity…then maybe they SHOULD be following mysterious advice from an unknown person online…

    That is all.

    • Chelsea,

      I truly thank you for taking the time to write your comment. You were my inspiration for last night’s post. Though you’re also the reason I stayed up until 3 in the morning writing and was wound up like small thermal bomb. 🙂 I’m a little irritated at myself for that one, but sometimes I can’t get off of a moving train. I think your comment is one of the nicest I’ve ever received *cue sappy music and choir singers. If my wife knew about the blog, I’d print and post it in my office along with some others. Thanks for playing the role of muse. I’m feeling like my old self again.

      UC

      • Well it’s about time someone started listening to me! Now if I could just get my husband to realize I’m always right! 😀

        Seriously though – I’m glad I could be a source of inspiration. No one should ever change themselves to fit into the mold of what someone else thinks they should be. (By no means am I singling out your friend…this is just a general life lesson.) You are who you are, and I think it’s pretty darn obvious that a lot of people are just fine with that!

      • As a husband, I will say that it’s a very hard skill to master. 🙂 The post Fox wrote last night is one of my all-time favorites and pulled me right out my funk. For that, I will always be grateful to you. Have a good weekend.

  4. UC – I don’t know how people could miss the rather large and very visible disclaimer on your site already that says nothing on this blog is intended to be medical advice and so on and so forth.

    It’s one of those time honored sayings: Never take medical advice from a madman with a bag on his head. To do so might be foolish, one would think.

    I also am a strong supporter of CG and her comment/public service announcement. In all seriousness, there is no need to apologize. You have been more than conscientious to your readers. Keep writing what you write. It lightens things up in a CF world full of insanity.

    Peaceful things.

  5. I know you like this…

    “Be who you are and say what you feel because those who mind don’t matter and those who matter don’t mind.” ~ Dr. Seuss

    Just so you know…I don’t mind. I LOVE your blog. It’s very raw and real, which I appreciate. Keep it up and don’t you dare start deleting parts to satisfy others. I just started blogging, so I’m going to need this same advice when I get someone who bitches about my ramblings…

    Stacey

    • Stacy,

      I love that quote. I think I left you a comment on your blog about how much I love that quote. I wish I had used it on my blog. Thanks for writing it on mine.

      Thank you for the kind words and motivation. This was a tough week thanks to my own doing. Would you mind if I placed your blog on my site? Don’t hesitate to say no if you’d rather not. I’d like to have the link for all to see, including myself.

      UC

  6. Don’t change your writing! As we take your writing with a grain of salt, so should you take our feedback with a floweret of broccoli…

    • Very funny, MAL. 🙂 It’s a double-edged sword. I can’t eat as much broccoli, but I still have to eat it. What a week. I put myself through some nutty adventures. I hope all is well with you.

  7. Hallo everybody,
    I’m the one who posted on Melanie’s Blog the “stuff” about you and your brocco adventures.
    You know, reading your stories for a bunch of times, I appreciated what you ever said. I’m a 28 y old CF. CF has not even destroyed me, and never will. I kindly identified myself in you. Reading the stories about Cf living on other planets and having special powers, or reading the color of the junk we get out every day and reading the future. I even thought about selling my junk for 1 buck /g. Anyway, I’m not desperate. I work in “science field” and so, reading Melanie’s blog, especially a comment by philippe (from alaxia pharmaceuticals, developing meveol” i tried to figure out what the hell iodine could fit with thiocyanates. It all had a sense when I read about you and thyroid.
    Try googling “goitrogens”. U ll find Thiocyanates. And on my own I just posted her to prevent this kind of side effect by somministrating some iodine with Salt, during meals.
    That’s it.
    Anyway go on with your posting, we’ll drink together in the skull of CF in 10-15 years.
    Just a question, which mutations do you have? I apologize if i ask things not on my business.
    I guess i clarified my position. 99% of the funny things i read here it’s like reading-wondering-thinking-cleaning from my mind.

    Francesco

    • Francesco,

      I’m really glad you chose to comment here. I’m happy we’re on the same team and it would be a pleasure to whack the shit out of CF with you. Because there is nothing more I’d like to do than just that. I won’t drink from its skull, however, because that will be smashed into a thousand pieces and covered in fox urine.

      I had an interesting week last week. The email hit me at just the right time. Overall, it was a positive experience because it showed me that I have to choose my words carefully.

      I look forward to more conversations with you and applaud you for your research. As to my mutations, we’ll have to date for awhile before I share my intimate secrets.

      Best to you.

      UC

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