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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.

I am a hater

I have complete respect for anyone who has the mental fortitude and positive attitude to be grateful that they have cystic fibrosis.

I am not that person.

I hate cystic fibrosis. I hate having cystic fibrosis.

I have a great life. Without cystic fibrosis I would have a spectacular life. Not just because I wouldn’t have it, but because the friends I’ve met on Twitter wouldn’t either. They or their children would be in perfect health and our tweets wouldn’t include words like “fever” or “antibiotic” or “nebulizer” or “new lungs.”

Fun in the ER

Today, I spent six f’ing hours in the ER. For weeks now, I’ve been having 6 to 8-hour episodes of not feeling well. I feel jittery, nervous, my heart doesn’t beat right, sometimes there’s SOB, chest pains and aches, and I have trouble swallowing. If I had a gun in the house, I wouldn’t be writing this. Trying to work at my job, which is high stress and requires a great deal of concentration and creativity, is the mental equivalent of working in a Chinese coal mine.

I know anxiety kicks in and is part of it. However, it starts with something else, not the anxiety.

I had high hopes for the visit. The ER is all-new and spectacular. Thanks to my SOB and chest pain, I was escorted to triage right away by the maitre d’hospital. They even surprised me with an immediate EKG, as the nurse took my vitals and looked over my drug list. Then they whisked me to my room and hooked me up to a monitor. Super service. All was great, like a Broadway musical, but without the singing and music.

Enter Mr. Killjoy

The musical ended quickly when I drew the short straw of ER docs and received a crappy one – the one assigned to Friday at lunch because no one comes in at that time. A coldfish of doctor with zero enthusiasm, who probably should have been a coroner instead. Usually, the ER docs are friendly and curious about CF and ask lots of questions, run tests. Not this guy.

After a very brief talk, he disappeared for five hours or so. Tick tock. Did I say how much I hate CF?

Finally, he showed up, hand sore from all of the paperwork he must have been doing, and told me he recommended that I stay overnight for observation and a stress echo in the morning. This was checking the box. It was “I haven’t spent any time talking to you because I’ve been busy for the last five hours, so the best thing to do is keep you here another 18 hours. And someone else will follow you and ask the questions I should have.”

I told him I had a stress test less than a year ago, which he wrote down. Hmmm, perhaps, he could have asked that question, had he thought it was a good idea to ask any questions.

Pucker up

That’s when I made a tough executive decision. I declined to stay. That’s the part where your balls get really big because you’re either stupid or brave – stupid in my case. But that was my medical decision. How could he base any decision on the limited information I gave him?  When he left the room, I called my doctor to confirm it was the right decision – he agreed the risk of leaving was low.

The nurse came in and hinted that the doctor was conservative and he had been really busy that day. Argh, if I bang my head against your new walls, will you make me clean the blood from them?

I left.

When I got to the car, I had a panic attack from leaving and had to text and talk to my doctor again to make sure I wasn’t going to die on the spot. This could be my last post, BTW.

My doctor thinks my thyroid might be out of whack based on what I told him. Why didn’t the ER doc think of that? Because he didn’t ask questions and wasn’t curious.

A silver lining

My first nurse requested that I be her patient when I arrived. She overheard that the guy in the mask, which still confuses them, had CF. She has a brother with CF. He lives in southern Los Angeles, is in his 30s and goes to the same clinic I do. It came up that I have a child. She said he wants to have a child but has the usual male concerns about if he can have a child. I explained how science helped me with a procedure she said her brother didn’t know about. During her lunch break, she called her brother and told him. She said he screamed with joy that he and his fiancée might yet have a child. There was hope.

It feels like the reason I went to that ER was for that purpose, to share that information with a wonderful nurse and her brother, who may have been at clinic on the same day I was there. However, he needs to do a little more research and not wait for a crazy man to show up at the ER to tell his sister what’s going on. So says Fox.  Oh, well. At least, something positive came from the visit – lemonade from lemons.

Stay well.