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    • #17002
      Bailey Vincent
      Keymaster

      One of the things I love about the forum is how honest we can be with each other (with no judgment) and… well…. I am feeling like a “poopsicle”. (This is the word my youngest daughter uses when you feel like trash)

      The issue is… I don’t know why? I felt great last Thursday, dancing for hours with my company, and by Saturday I was out of breath just doing simple dance steps in my living room, and by today I am out of breath just sitting and doing work in bed. The reason it’s baffling is… I don’t have a worsening cough? Nor worse mucus production. Nor any of the other telltale signs of an exacerbation. I don’t even feel “terrible” in the traditional sense of fever and so on. It just doesn’t feel like my usual exacerbation. 

      I feel weird even messaging my CF clinic because I am so unconvinced that it’s lung related. In my mind, perhaps it has something to do with the cervical disc that’s messed up in my back and might need surgery… Maybe it got worse and it’s impacting how those nerves and muscles feel around my upper respiratory? (It feels very very very upper, not lower)

      Yes, I’m going to make some doctor calls and see what they think, but I already know they’re going to say: “Go to the ER.” Then, the ER won’t find anything because I can already tell it’s not my lungs, and my oxygen seems fine… and I will feel like I’ve wasted everyone’s time.

      First Question: Does any one else feel like it’s “your” fault when an ER visit is fruitless? (I avoid the ER to an insane level, for this reason)

      Second  Question: What was a medical mystery in your history that was eventually solved? 

      Perhaps something that everyone thought was one thing and it turned out to be another? In this case, I could be incredibly wrong, and maybe I have inflammation or something else going on that is leading to this decline in how I feel, but isn’t “classic CF infection” with increased cough. Or, maybe I’m right and it’s something not directly related to lung health. I’ll keep you posted.

      The point of this post was basically to say: Do you ever feel like one thing is wrong and everyone else is telling you it’s another? What do you do and how do you handle it? Let’s discuss. 

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