Those fleeting moments of feeling well

Today I read a very good post by Mandi at

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.


12 thoughts on “Those fleeting moments of feeling well

  1. I TOTALLY understand! I always look past the CF thinking what else could it be – research all over the internet… My dr does however look past CF as well – she’s good with that. You’re not insane – just human 😉

  2. You are insanely accurate! You just described my world better than I could. Always questioning, doubting, unsure of what does THIS symptom mean?? Take this week: intense headache I can’t shake. Is it the Celebrex the orthopod gave me? Is it the TOBI I’m using in sinus washes? Is it stemming from my bad neck and I need to see the chiropractor? Did chewing gum the other day set off my TMJ? It’s exhausting. I try to plow through and ignore it until I just can’t. Sometimes it’s nothing… but the last few years have been filled with big SOMETHINGS and that makes a person wary.

    • MAL,

      You’re funny. Tell me again why you don’t have your own blog where I could go and leave funny comments?

      Your comment sounded just like my mind every day. Do you ever wish you had a ton of your own testing equipment at home? I do. I’d love to have my own EKG machine or heart monitor. How nice would that be?


      • Thanks for the nice words. I need lots of encouragement… I’m hankering to begin a blog but alack and alas, I find I’m commitment-phobic. I’ve been resisting using my schtick on other blogs to save up for my own but maybe that’s the way to go?!

        YES, I wish I had my own equipment at home. I think I’m going to buy an otoscope so I can look up my nose. Not at others, but up MY nose. I can feel the sinus infection a full week before the ENT can see it! I swear.

      • The only rule if you start your own blog is that you still have to leave comments on mine. Wouldn’t be the same without them.

        I can’t wait until you have to go to the doctor to have him pull that thing out of your nose because you stuck it up to far. 🙂 Not that I hope you do that, but it might make for a great post for your future blog.

        I hope you use something to flush your sinuses with. It’s been a been help with mine.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s