Despite the fact that my online friends and I often live thousands of kilometers apart, sometimes we are lucky enough to meet one another in person when the right series of events occurs. Back in the Fall of 2011, Dia (who I really hardly knew at the time!) happened to be in town for work . . . and then we clicked so much I ended up skipping Issues in Sport to continue hanging out with her in Second Cup due to the effects of #kinwin (kinesiologists: we get it).
On occasion, Dia blogs at Respiratory Situation. Today, I’m stealing her and she’s sharing her story here! (And, if you have any questions on the science-y things, I’m going to have to refer you to her!)
A big thank you to Kerri for asking me to guest post on her blog
Happy Asthma Awareness Month everyone!
Here is a bit about my asthma story; I had what has been described as childhood asthma but the experts have debated that it might have really been some kind of bronchiolitis. I was asymptomatic for decades until I got a cold, which became pneumonia in 2008 and things were never the same. My family doc mentioned that my “asthma” was exacerbated and I remarked ”…but I have not had symptoms in decades” how can this be asthma?” That question began a journey of tests, doctors, meds, more tests, more doctors ( world renowned docs), 2 counties , different meds, participating in research, novel treatments, becoming a more informed patient and developing an excellent working relationship with my doctors.
The heterogeneity of asthma
The asthma umbrella incorporates tons of different shapes, sizes, and abnormalities…etc. We are not all round, trying to fit into a round hole. I know for sure that I am a SQUARE! My respirologist once told me that none of his patients were the same. They all have variances from each other. This is one of the things that makes asthma so complex. Some patients are coughers, wheezers, produce sputum and others don’t. Some respond to certain kinds of treatment and others respond to something else. ( There are lots of journal articles on asthma phenotypes, endotypes and personalized medicine , you can also speak to your Respirologist about this topic.)
My “Square Peg was finally identified after wading through a sea of “ its just asthma, use your rescue inhaler and we don’t really have any ideas, why you are not getting better so, lets just keep you on prednisone.” Btw: I am yet to be convinced of the wonderfulness of long term prednisone use, much to the chagrin of my Respirologist , even though we are trying everything to get me off that posion.
My Peg involves a significant eosinophilic component, mucous hyperseacretion and severe airway hyperresponsiveness. There are limited options for my specific abnormalities. Name the inhaler, add on therapy and I have probably tried it. I have also tried a few out of the box therapies with mixed success. It does get discouraging but you just have to keep pushing forward. This fall was the most ill that I have been in nearly 2 years and it was scary, but you get through it.
What to do as a “Square Peg”?
Arm yourself with knowledge, read everything you can, ask questions, be willing to try something different, participate in research, be pushy but also be respectful of your care team (they are people too and are often just as frustrated as you are), be an ACTIVE participant in your care. Keep pushing for better treatment, better awareness and find/develop a network of asthma peeps to help you through the journey.
A network of Asthma Peeps
There are times when asthma and lung disease suck beyond belief. When you don’t bounce back, despite all the treatment under the sun, when people don’t understand what you are doing, is the best you can with what you’ve got. Be responsible for yourself, change your perspective and be willing to try.
Remember that people are cheering for you to be successful (get better, push new limits…etc) I encourage you to find a group of people who understand (speak to your doc about speaking with a therapist who deals with chronic illness or directing you to a support group). There are also online communities that are awesome and you can meet some wonderful people (Like Kerri!) through them but you should be willing to be an active participant in that relationship. Why not start a grassroots based support network?
To my support network and asthma/lung team, THANK YOU for everything.
You can find me at http://respiratorysituation.wordpress.com
Resources that I find helpful (Of course nothing can replace human contact!).
Badassmatics on Google+
PURR at FIRH , Pulmonary Research Registry
Severe Asthma Research Program
The Asthma Society of Canada