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My rant for the day

Most days, I'd say I'm a pretty positive person. I hate being grumpy and in a bad mood, and I don't like the person I turn into when I'm frustrated and upset.

If you sense a "but" coming, you're correct. This afternoon has been a downhill battle. You see, my cough has gotten significantly worse in the past week. In the morning especially, I feel like my airways have been cut in half. This isn't very unusual for me. My last round of antibiotics was in January, so I'm impressed I made it this long without needing medicine. Well, after going back and forth between the CF office and myself, the final decision was that I could start IV meds or I could start IV meds. No, that's not a typo. I literally had no say whatsoever in my healthcare, even though I haven't seen the doctor, done PFTs, or been evaluated. I just wanted to start on oral antibiotics, for crying out loud! Not only did I have no say in my treatment plan, but my doctor is constantly trying to get me to take charge of my health and be an active participant in my therapy. Why, then, were they treating me like I'm incapable of making important decisions? It is true that the bacteria in my lungs is very resistant and shows that it is only sensitive to IV meds. However, I've been on a combinations of oral antibiotics in the past, which has given me temporary relief, even though I know that doesn't make sense scientifically. I'm not ignorant. I know that oral antibiotics cannot fight my bacteria as strongly as IVs. But I also know I have absolutely NO time or energy to deal with IVs while I'm in school right now. IVs would be counter effective to my health because I don't have time to do the extra treatments, get the extra sleep, and eat the extra meals that I must fit into my life on a daily basis when I'm on heavy duty meds.

Eventually, my doctor agreed to start me on oral antibiotics. I'm still furious that I would be treated in such a demeaning way. This is MY body we're dealing with here. I should have every right to make the final decision about what treatments I do or do not do. And if the CF clinic is pushing me to become more "adult like" and be an important part of my care, let me take responsibility. Let me have a say in therapy. Talk with me instead of talking at me. I'm sick of just being seen as a patient. I'm a human being, with a life outside of CF. I have thoughts, ideas, and schedules. I know I didn't go to med school, but I have been living in this body for 20 years. I'm pretty sure I know my body best.

Thanks for reading my rant. I hope you're having a better day than I am!

Comments

  1. Sorry Emily, my day kinda sucks too, but that's a whole other can of worms! To the point - you may not be a doctor, but you are an impressively intelligent young woman with a real knack for getting your ideas across in writing. 1. I hope your health improves with the oral antibiotics. 2. I hope you are able to build a better working relationship with your CF medical team. 3. I hope you find a place in the world where your obvious talents can be put to good use and that doing so makes you happy. I'm going to try to enjoy the rest of my day as best I can - my 4th hope is that you do, too.

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