perspectives on asthma: it’s a six-letter catch-all

To wrap up Asthma Awareness Month, I thought it would be interesting to vlog a day with asthma to give an idea of what things can be like. Though I’ve been sharing guest posts from my friends with asthma, they capture the big picture but not the finer details of the day to day intricacies of living with a chronic disease.

Asthma, though, can look immensely different from day to day and from person to person. I am extremely thankful for the willingness of some of my friends to rise up and join me in sharing what a day in their lives with asthma looks like (and, on very short notice)–and of course, if anybody else wants to contribute, by all means, please fire a video off to me!

Super special thanks to Steve for getting a video off to me on really short notice!

Steve and I filmed these in an overlapping block of time, so we really had no idea what the other person was doing. However, our perspectives really overlap in certain parts of these videos, which just blew my mind. Steve has really severe asthma, but if you know any part of his story, you’ll know that he truly rolls with it, does what he has to, and lives a really vibrant and active life regardless of his asthma.

However, despite “asthma” sharing a common name, and Steve and I having common passions . . . you will see that Steve’s day is dramatically different from mine.

(By the way, I’m convinced Steve is a pro video blogger in disguise. And I think he needs to do this more often. Also, Steve, I like your hoodie.)

Asthma: it’s a six letter catch-all.

It can have a host of symptoms from coughing, to shortness of breath, to wheezing, to chest tightness.

It can be asymptomatic, or relatively mild, or severe enough to require treatment in the intensive care unit.

It can be treated with inhalers and nebs, pills and injections.

It can affect somebody for two minutes a year, or twenty four hours a day.

It can be anything but simple, and there is no such thing as typical.

But most importantly . . .

It can be owned,

it can be lived with

. . . and it can be thrived with.

dia’s asthma story: square peg in a round hole

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!)

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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

http://www.amazon.com/Fishmans-Pulmonary-Diseases-Disorders-Set/dp/0071457399

http://www.ncbi.nlm.nih.gov/pubmed

The Asthma Society of Canada

breanna’s asthma story: give and take

A couple months ago, I connected with Breanna through the Asthma Society of Canada’s Team Asthma Facebook page. Breanna has severe asthma, and is looking into bronchial thermoplasty as a potential treatment option–today, she’s sharing a bit of her asthma story here for asthma awareness month. Thanks Breanna!

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breanna1.jpg

I am a 28 year old female and was diagnosed with mild asthma at the age of 19, to be honest never really thought much of it. I carried an inhaler when I remembered and used it as needed. In November of 2009 suddenly my asthma became severe. I realized that I had taken it for granted, started a controller inhaler and singulair. Unfortunately things didn’t improve and I started seeing specialist. I am currently on my third specialist, first one being an internalist and the last two being respirologists.

Every visit seemed to bring on new medication, new tests and frustrations. I went from going to emergency every 2 weeks to once a month and currently about every 6 weeks I have landed in emergency. I have been intubated, triedc-pap and many medications. Currently I am awaiting an appointment in Hamilton to see about possible bronchial thermoplasty. I have very atypical asthma, I cough continually and do not wheeze, however all tests point to asthma.

Asthma has taken so much from me, I am currently on disability from my job, it has taken some of my friends, some of the sports I played and activities I loved such as camping. However asthma has given me so much, I found out who will support me through all the frustrations and doctors appointment. It has also given me a new appreciation for those who strugglewith chronic illness.

I have made new friends and a new support system. As I am not working I am able to help friends out when I am feeling well and also slowly exercise to try to build up my lung tolerance. I am also able to take some university courses through distance education.

Asthma is a difficult disease it takes and gives and not many people understand the severity of the disease. On World Asthma Day I hope people take a chance to learn and educate themselves about the severity of the disease. It is even important to learn about triggers, I react strongly to scents, chemicals, smoke and weather changes. If you see me covering my mouth and hurrying away from where I am, please look at the amount of scent you are wearing.

Asthma is now a part of who I am but it does not rule my life.

–Breanna Harms

twenty-two.

As 2012 turned to 2013, I re-evaluated what goals i’d hit on in 2012, and which I had yet to accomplish. It’s a constant process, and it’s stellar to see it unfold. However, it’s true that I’ve never been about the new-year’s aspect of new years resolutions, and the reality is, I never hit up any goals for 2013.

So, instead of the typical new year benchmark . . . I’m using my birthday!

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Goals for my twenty-second year:

  • Get healthy. [It’s vague, it encompasses a lot of things, but is it ever relevant right now.]
  • Walk a 10K race. [Last year, wouldn’t have been a big thing. This year, after the asthma shenanigans and the anemia shenanigans, I’m starting from zero. And that’s scary–however, if it doesn’t scare you, it doesn’t change you.]
  • Active choices: Make them.
  • Visit new places near and far.
  • Pass anatomy.
  • Create more. [Writing, music, video: it all counts.]
  • Journal (at least) weekly.
  • Be more mindful–focus on the present.
  • Abandon apathy. [Special relevance in regard to asthma/sinus care, but also everything].
  • Learn more about learning more.
  • Trust the process.
  • Continue to recognize the Good Things.

 

i’m one year older now since the last time i saw you / in case you wanna know, i’m about to say what i’m up to […] / some peace of mind is what i want, but that will be the day.

[…] searching for the energy and the time to make a change / to make a change in my life / instead of watching it pass by / get something done while i’m alive.

i’m twenty two / don’t know what i’m supposed to do / or how to be / to get some more out of me. […]

afraid that i will be weak forever / i can’t stay in this shape any longer […] / i’ve been going with the flow for too long now / this must end / running ’round in circles / i’ve been so far from myself / i try to activate myself the best i can / so boredom won’t catch up with me / i got my daily plan.

twenty two, millencolin

twenty-one and invincible: looking back on the eve of twenty-two

Twenty-one. Here we are, three hundred and sixty five days later, on the eve of twenty-two. It has been one crazy year.

June

  • Working my way through anatomy for the 3rd time, so blogging is scarce.
  • A simple blood test tells me my thyroid is a bit messed up, and that I’m anemic [the thyroid, it seems, fixed itself.]

July

August

September

October

November

December

January

February

March

April

May

There’s a Something Corporate song called 21 and Invincible. And really, I think I nailed that this year (. . . partly because I am still alive).

Some days go by, I wish I were famous / Or maybe religious, so I could go to heaven just like you […]

Woah, we’re twenty-one and invincible / can’t wait to screw this up / And I’m in power for the hour / I guess today’s gonna blow us away.