Learning From my Life as an Asthma Patient

I think that sometimes I get so preoccupied with lung things, other health issues take a back seat or become less of a concern.

Mystery symptoms, not related to the lungs

It all came into focus for me when I needed to attend to another health issue. I had been having some symptoms in another part of my body and I finally decided to make an appointment to see my doctor about them. I am willing to confess that I most likely waited way too long to get this checked out. My symptoms were initially only slightly outside of the normal, they fell in line with what is considered a byproduct of taking prednisone so I chalked it up to that. My symptoms intensified and I finally made an appointment to be seen. After a series of appointments, ultrasounds and a referral to a gynecologist I was finally on a path to figuring out what was causing my symptoms.

After waiting months for the specialist appointment, I went in prepared, or at least I thought I did. I had my symptoms notes with an 18-month time frame. I honestly walked into this appointment thinking that I was going to be received as a smart and prepared patient. This is not exactly how it went. The specialist was quite nice but I felt like my concerns were somewhat dismissed, from what I understood, because I was not symptomatic at the time of my appointment, we were going to watch and monitor the symptoms over the coming months. I know that I should have felt relieved that it was not something dire but, I felt deflated. I knew that I wasn’t feeling quite myself and I am fairly confident that I should not have pain but also understand that the body is ridiculously complex and that I am ummmm….aging… but I thought there would be more of an action plan. My journey as a respiratory patient has seen that we have to cultivate relationships with doctors. I forgot about this very important step. I have not yet built this relationship with this specialist. I have a follow-up appointment booked in a couple of weeks and we will reevaluate then. I am vowing to come to that appointment more prepared and with more realistic expectations. I had forgotten my medical notebook with my other data in it. Even though I had what I thought was extensive notes, she did ask me questions about the last decade, yep, decade. I didn’t have those handy. I will also go in with new expectations that this is a new doctor that I will have to get to know and who will have to get to know me.

Focus on lung health vs. overall health

I have spent so much of my time managing my lungs with what I think is a degree of success that I was thrown off and ended up not being on top of another medical situation. For the last eight years, I feel that my lungs have been all-consuming; I’ve been busy tracking things like clinical trials, advocacy, research and also meeting amazing people, discovering my own strength and to a certain degree, it has helped me grow and even redefine what I thought my priorities were. I am starting to realize that this has been an important part of my life story, although it is not the whole story.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Asthma.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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