Reflecting On Past Asthma Experiences
This week I was on a mission for some information about my asthma: quantified self data. Thank goodness I keep fairly detailed notes because I am not sure where I would have found this data otherwise. This let me stroll through memory lane and across some themes in my asthma journal.
There seemed to be “secrets” (or at least secret to me). These included some ideas about feelings and experiences that I was not sharing with others--or at least many others. These themes reflect specific moments in my asthma journey, some I still deal with, some I do not. This is a great reminder that I am resilient and that I made it through the bulk of them just fine.
A quick rundown of my asthma experiences
Experiences with treatment and professional care
- Feeling frustrated that my medications were not working.
- The frustration of being told, “I don't have any more ideas,” from my specialist when I so desperately just wanted to feel better.
- The worry about the cost of my biologic, especially during times of insurance uncertainty.
- The lack of treatment options from 7 years ago. I am glad to say that improvements have been made to this and I have been able to benefit.
- Highlights from the 5 pulmonologists that I have seen, some experiences more successful than others.
Experiences with self-care
- The endless tracking of data. Even though I am super nerdy about science things, there is only so much data that one person really wants to keep. Then again, this is also how I found a few gems of information, such as adverse reaction trends.
- Seeing improvement in my advocacy skills and “owning” my asthma.
- My obsession with sputum and wanting to know everything about it.
Bad asthma experiences
- Missing out on activities, including a beloved spin class and catching up with friends.
- Mixed feelings about changes to my body and the sheer havoc that steroids have caused.
- That I knew that I should freeze my eggs because the asthma investigational drug road was long and then time just slipped away. This counseling should really be available for women of childbearing age.
- The internal doubts that I have had about my asthma being asthma. Don't fear, I have been evaluated many times and I can’t shake this diagnosis. This includes diagnosis by methacholine challenge, spirometry, and symptom reviews by world-leading pulmonologists to rule out masqueraders.
And good asthma experiences, too
- Meeting the most amazing friends through asthma.
- Pondering how long it might till my next exacerbation and recognizing that, in times of good health, these were no concerns at all.
- Being skilled at participating in clinical trials and wanting their design to be more patient-friendly. I am glad that improvements are being made on this front.
I used to feel hopeless that better days would not be in front of me. Now that I have been able to look back, I see that there were better days to come.
Here are some of my wishes for asthma in the future
- One day there will be a cure or at least treatments that do not circle around oral corticosteroids.
- For asthma patients to know they are strong enough to handle the ups and downs of this experience.
- Advances in phenotyping and endotyping will give asthma better street credibility and highlight the severities and impacts on people's life. It is not "just asthma" for many.
- Amazing researchers will keep at it.
- Everyone will feel comfortable participating in shared decision making.
- Patients know it is okay to “break up” with their doctors if they do not feel they are getting the care they need.
- I can stop begging for access to my visit notes and I can stay on the same page with my clinician. Patients need access to their clinic notes and not just summaries.
Have you recorded your experiences with asthma?That was a good trip down memory lane. While I am not always sure I want to experience all the challenging times again, these are the experiences I have been given.If you are heavily laden with “asthma secrets,” I highly recommended writing them down or journaling. I found this to be a very effective tool for me in managing my asthma. I use it for a range of purposes, including:Keeping track of all the clinical stuffGetting out all the feelingsAnalyzing data and setting goalsWhat methods do you use to manage your asthma? I would love to hear about them or see them shared in our community.
Do you keep a journal or another writing practice to manage your asthma?
Have you ever gotten "moon face" as a side effect of prednisone?