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.

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