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    • #17283
      Bailey Vincent

      Yesterday I posted about having a Telehealth appointment (which turned out swimmingly as the surgeon is so kind, methodical and patient), but I did hear news I didn’t want to hear: I will have to have surgery.

      Basically, I’m out of options with the disc in my upper back, and it’s either live with this pain forever (which would sort of mean eventually giving up work, as it’s making work incredibly difficult) and risk it becoming an emergency (like with my lower back, which stopped my feet from moving… twice), OR have the surgery.

      Because it was not an acute injury (like, “Oops! I herniated my disc lifting this heavy thing, now I must rest so it can heal”), and was caused by bones degenerating, this means we have to completely replace the disc with a fake disc, in order to move forward.

      I wanted to be upset after the appointment because 1) I just had surgery a couple of weeks ago and I really want to “catch a break”, and 2) This greatly impacts my dance company’s season [which kicks off in a couple of weeks] and my ability to dance in the show… But then I tried to tell myself: “How would you feel if he had said, ‘We can’t do anything to help’?” And the truth is: I would have felt worse.

      Knowing a doctor can do something to help is always (for me) better than nothing… so I am trying to turn my “whoa is me” around and find the upsides.

      My question is a bit of an emotional one: Do you ever feel guilty for being upset about something medically? Or for wanting to throw a temper tantrum for a minute?

      I have enormous guilt when I don’t find the bright-side right away. To the point where, sometimes, I almost feel like a “bad patient” or a “difficult person” and shame myself whole heartedly. I know we can say “don’t feel that way, silly”, but even when I know I shouldn’t… I still feel it?

      Why? I don’t know. Is there a pressure put upon patients, from the outsider or close-circle perspective, to always be good sports? I’d love to know your thoughts or experiences with this, if willing to share. 

    • #17285

      This struck a nerve with me. I have just recently had a significant CF exacerbation; which I managed .However, I am in whine mode as I was stung by a hoard of yellow jackets ( anaphylaxis) and a bunch of bizzaro complications thereafter. It just feels like the storm won’t move !

    • #17287
      Tim Blowfield

      Sorry Bailey to hear of your distress. Your reaction is very normal but that is also something  to be grumpy about. How we deal with the disappointment is an issue – do we let it cause issues with family and friends – esp in your case your daughter. It is difficult.

      The great thing is today surgery has a great prognosis compared with 30 years ago.

    • #17288
      Jenny Livingston

      I’ve felt this pressure you speak of, but I am proud to say that in recent years I’ve felt it far less. I reject the notion that everything needs to be sunshine and rainbows. Even though I am relentlessly optimistic, I believe we need to feel and have respect for the difficult things, too.

      I’m a big fan of throwing temper tantrums or even the occasional pity party. Although here’s the thing: I joke about it in these terms, but I think that your feelings (and everyone’s) are completely valid. We’re allowed to be upset. We’re allowed to cry. We’re allowed to fall to our knees, throw our hands up to the sky, and shout that life just isn’t fair. I think giving ourselves the space and grace to feel these things is important. There doesn’t need to be a bright side or silver lining. Sometimes things are just hard.

      What’s more important, I believe, is what we choose do to after the temper tantrum. What comes next? We pick ourselves back up, wipe the tears and snot off our faces, and we move forward. Feel what you need to feel and then go from there.

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