When a Follow-Up Appointment Leaves You Feeling Unsure
Did you ever have one of those appointments where you just were not sure what to feel and then when you left you were having all the feelings afterward? This is how I am feeling right now. I had a follow-up with my respirologist today and it was simply a weird appointment.
The wait
The clinic was very full today. It was strange to see a full clinic since most things during COVID-19 response have not been as busy. There was still physical distancing, however, every available space seemed to be just about occupied. It was combo clinic day, with lots of cross specialties clinics happening. I always think the cross-discipline clinics are especially cool, the combination of a whole team working together to improve the lives of patients and address tough diagnoses and treatments. This is a team that I would want rooting and advocating for me. While I saw the docs whiz by and call patients in, I was in a familiar waiting room, where I swear I saw someone that looked familiar and since I am not 100% sure it was them, I did the casual nod and that was about it. I feel like waiting rooms, make social interactions even more awkward at times.
It was finally my time to be summoned, however, only to a different waiting room since there were so many patients today. I was introduced to a Fellow who was going to do a portion of my visit for their learning, present to my specialist, and then he would speak with me. I had the pleasure of waiting some more, this time in a larger waiting room with a television and the daily news channel. A minor step up from my tiny waiting room but without the lovely autumn city view. I kept thinking “do I need to do Med Ed today?” I usually welcome the opportunity to be open to their learning but I honestly wasn’t feeling this love today. It was finally my time to be called, we covered the bases, ACQ, symptoms, review of my last visits, concerns.
My concerns
Interestingly, I have been losing lots of hair, I am on a dual biologic combo and I have wondered if this may be the issue. While I did not receive a definitive answer and it sounds like it was not a big deal to the clinicians unless I had actual bald patches, I will continue to carry on and my vacuum will continue to get an extra workout. We wrapped up the question and answers section and the Fellow went to present my case. More waiting for my specialist to arrive for our chat. It was only about 15 minutes, however, it felt like forever and I missed a golden opportunity to sift through my chart. There it sat unattended and I could have had a good read-through. I could kick myself for missing that opportunity. I was distracted with trying to purchase a ceramic mug from “a secret mug society” a story for another time.
The asthma specialist's report and my feelings after
I finally reconnected with my asthma specialist and while we had a good chat, their statement that “I am the best I can be and there isn't more they can do” really hit me. It hit me like a punch in the gut. I sat there a bit stunned. While they did go through all the positives that have happened: I am finally off of daily oral steroids, the improvement in my lung function, my pesky mucous situation is finally under control. I had a lot to be thankful for, yet I yearned for this return to a life where my physical activity was fantastic, my old life, my pre-severe asthma life. It also left me with a giant sense of loss. If I was indeed the best I could be, who was I? The other reality was the message that the steroids have taken a toll on my body. This disease occupied so much time, strength, mental space, energy and changed my body and I want my old self back. The reality is that I was going to have to find a new way to move forward. Time to plan for a future as my “best as I can be” self. I am not sure exactly what this will look like but I will keep you posted on my journey.
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