advocacy / asthma / badassmatics / health + fitness / life

world asthma day 2013: catch my breath and go for it

• by kerri

World Asthma Day was last Tuesday, and I am extremely frustrated that I missed it being in the hospital. I missed my five-year asthma-versary being sick. As for my World Asthma Day post, here it is. Late and without the buzz surrounding World Asthma Day.

But you know what? The first Tuesday in May or not, it still matters. It matters as much as it did on the day that it was created, and it will matter as much as it does until this stupid disease is cured. I feel asthma as both a blessing and a curse, but the reality is, I would probably be a different person without it–and I honestly don’t think i would be a better person without it.  And I certainly would be missing a lot of amazing friends without it.

On World Asthma Day, though, at 3 AM PDT (5 AM CDT), from hospital rooms 3,035 kilometers apart in two different countries, through e-mails my friend Steve and I decreased the distance for moments at a time, as he dealt with a lot of hardcore shit at the same time as he was hospitalized yet again because of his asthma.  Steve is not only the guy who is half responsible for my perspective on living with asthma being how it is, because of all he’s taught me and all he’s walked through with me . . . but because it’s when he gets sick, it’s also when I get the angriest about this stupid disease and the reality of the impact it can have on people. Yet, Steve’s story also contains a lot of positivity. As does mine.

There are echoes of conversations I’ve had with many people in this video–with Steve, with Jay, with Natasha and Elisheva and many others.  And now, I’ll share them here.

Because I have the ability to change my own world. And having asthma doesn’t change that.

The guest posts will resume this week, and I am really excited to share them with everybody. Have an asthma story to share? E-mail me at kerriontheprairies [at] gmail [dot] com.

asthma / guest posts

elisheva’s asthma story: reflections and musings on asthma and world asthma day

• by kerri

My friend Elisheva is now on her third guest post on blogs I’ve written in the past, and her second here on Kerri on the Prairies!  Elisheva and I connected several years ago because of our asthma, and I think she is my furthest-distance long distance friend, living in Jerusalem, Israel.  Aside from being able to talk about our asthma, I love how much I learn about not only Israel, but the rest of the world from knowing her, as well as simply seeing how she has progressed through a variety of different life stages in the three-and-a-half (or more?) years since we’ve known one another!  And a fun fact . . . Elisheva is also known for hosting World Asthma Day (WAD) parties, something I think is extremely cool–thanks for guest posting again, Elisheva!

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Kerri asked me to do a WAD themed guest post.  And I love Kerri’s blog, so how could I say no?

I first heard of WAD… uh… maybe 6-7 years ago from a friend who loves checking what  special day each day is – cuz every day is something if you check.  Said friend is asthmatic too (tho since she’s been an adult, it’s become much more mild and she only needs the occasional Ventolin – lucky!  Although she also has deathly food allergies – not so lucky.), so we organized a party.  And since then, every year we’ve had a party.  This friend had a baby a couple of months ago and I’ve been busy with my own stuff (I just got back from a week in the Czech Republic – Fun!), so I think this year won’t be that exciting – tho there will definitely be some sort of party!  You can read about the one from 2011here (from back when I blogged).  Was pretty rockin’.
 
So… WAD.  I love WAD.  I love this time of year because the weather is generally nice and there are a whole slew of Jewish and Israeli holidays that are my favorites and also there’s Eurovision and Britain’s Got Talent.  (I’m easy to please.)  But WAD is great because on that day, asthma isn’t something that makes me weird and different – it’s something that makes me special.  And while it’s supposed to be about awareness, I just celebrate it.  Get together with friends who have also been on inhalers their whole lives or most of their lives or only recently or not at all and eat food and play games.  I love food.  And games.  I still have to come up with one by Tuesday.  Hm…
 
I actually have a lot of asthmatics in my life.  I tend to attract them for some reason.  And I come from a family of crappy lung gened people.  My mom, my brothers, my aunt and several of my cousins are asthmatic too.  In terms of living with it and in terms of WAD, it’s all about how you look at it, I think.  I keep inviting my brothers to WAD.  Every year.  One (asthmatic since age 16 or so) lives in the US now, so he can’t come, but he likes the idea.  The other (asthmatic since birth) thinks it’s lame and that I’m weird and keeps asking me why he should celebrate his lung disease.  I tell him (and anyone else who asks) that’s it’s not celebrating the disease itself.  First off, I love parties.  Any opportunity for a party is great.  I also love WAD because it’s turning something negative about me and making it almost positive.  Hanging out with other people who know what it’s like and share my experiences and who can make fun of it with me.  And eat food.  And play games.  Yay WAD!
 
Kerri marked her fifth asthmaversary last week.  I have no clue when mine is — just that it was at some point during fifth or sixth grade.  In Jewish culture, all trees have the same birthday – 15 Shvat.  Doesn’t matter when in the year you planted your tree.  On that date, all trees become a year older.  I hear in some cultures it’s like that for people too.  So I figure WAD is as good a time as any to be a collective asthmaversary for people who have no clue when theirs is, eh?  And on my fake/alternative/replacement/tiny-chance-that-it’s-actually-real asthmaversary, I’m gonna get all reflective.  Cuz that’s what birthdays and anniversaries, etc are supposed to be for, right?  Reflecting.
 
I’ve always wondered how life would be if various factors were different.  What if I was born male?  What if I lived a hundred years ago?  What if I wasn’t Jewish/Israeli? (That’s a pretty open one.  Cuz then, what would I be instead?  There are a billion alternatives.)  For many of those I conclude that I just wouldn’t be me in those situations.  My identity is built so strongly into those details of my life that if they changed, my experiences and beliefs and outlook on the world would be so different, I just wouldn’t be me.  What if I wasn’t asthmatic?  Then provided the rest of my life was the same and that was the only difference, I’d definitely still be me.  In this alternate reality, no one in my family would be asthmatic (since I’d already seen plenty of asthma before my own diagnosis) and we wouldn’t have any other chronic thing instead.
 
Okay, let’s run with this.  If I wasn’t asthmatic:
 
  1. I’d likely smoke hookah/nargila socially. I drink socially.  And in the Middle East, drinking socially generally goes with sharing a hookah.  I personally love the smell of hookah and honestly believe that smoking one a few times a year really is fine – if you have healthy lungs.  I believe that cigarettes are disgusting.  But so is drinking all the time.  Every time I get a whiff of nargila, I tell whoever I’m with that if I wasn’t asthmatic, I’d definitely smoke one.  Then again, this is all theoretical being as I was diagnosed as asthmatic years before I was ever offered a smoke.
  2. I’d probably be more of a bum in terms of physical fitness. I exercise 1-3 times a week when many of my friends don’t exercise at all.  I occasionally use asthma as an excuse to get people to join me (“I have an incurable lung disease and pump drugs into my body to breathe normally and more to exercise.  And I still do _____.”)  But most of my friends have either brushed me off as crazy or tell me I do it BECAUSE of the incurable lung disease.  Because I feel the need to prove myself.  I think there’s some truth in that second group of people.
  3. I’d be less compassionate and understanding than I am now. That’s something my friends really like about me and tell me pretty often.  I have several friends who have more severe/debilitating/life altering diseases than I do, and I adapt to their needs and treat them as normal without thinking twice.  As healthy as I am – and I am lucky and am able to have my health under control and feel pretty normal a lot of the time – I do know what it’s like when walking down the hall to the bathroom feels like running a marathon.  And even on a day-to-day basis when I’m feeling fine, I know what it’s like to monitor your health and take meds when your friends don’t.  (I’d say I don’t take breathing and good health for granted, but I mostly do.  I’m spoiled by modern medicine.  Which is why whenever my breathing craps up for days or weeks and actually disables me in any way, I turn into a huge baby and feel sorry for myself, because I’m used to doing the treatments and actually having them work and feel betrayed.  But whatever.  I know what it’s like to not have your body do what you want it to do.  It sucks.)
  4. I probably wouldn’t have a primary care doctor. I hate going to the doctor so freaking much — It’s not normal.  So much that when I was a kid I had high blood pressure every time I got it checked and the doctor eventually sent me to have my heart checked out – it was fine.  Turns out I have perfect blood pressure and it only goes up around doctors.  Having lung issues for most of my life has made it necessary that I see a doctor occasionally – to keep tabs on my breathing and to make sure I have a steady stream of prescriptions coming my way, but I STILL can’t stand going.  Every time I have an appointment, I spend the entire 24 hours beforehand dreading it.  If I didn’t have something I need to keep going back for, I’d probably never go, and when I did, it would be to whoever happened to be there and could see me that day.  Which is what a lot of my “healthy” friends do.  Lung specialist?  Hah.  I hate that even more.  I only end up there every few years when my GP nags me that it’s been a while and I should really get pulmonary function testing done.
  5. I could probably run/swim/do any and all physical activity much better than I can now. Provided I worked at it as much as I do now.  I’ve given up believing I can run and swim like everyone else.  Zumba yes, but running and swimming are just too hard for me and will always continue to be hard.  I still do them, but I don’t think any amount of any asthma drug can get me on par with everyone else.  Perhaps if the water wasn’t chlorinated or if running had breaks…
  6. I could freaking clean my house properly without coughing and without extra drugs. Then again, I could do anything and everything without any inhalers at all.  Ever.  I can’t even imagine that.
  7. Also I wonder what long term effects asthma and its treatment have had on my body. As far as I know, I don’t have any permanent lung damage.  I wonder if my body would be any different if it didn’t have ~16 years of asthma drugs pumped into it.  A friend of mine is a massage therapist and last week she was working on me and pointed out that in most people (i.e. anyone she’s ever worked on before), she couldn’t feel their accessory breathing muscles in their neck – which are really only used when someone is struggling to breathe.  In me, they were totally buff.  So I guess I wouldn’t have those.
  8. I wouldn’t celebrate WAD and I wouldn’t be writing this. I wouldn’t know Kerri or anyone else I have met and become friends with because of having this in common with them.
I dunno.  I don’t think my life would be that hugely different.  As far as I’m concerned I lead a pretty normal life.  The things on this list aren’t that huge in the grand scheme of things, yet they define a significant part of who I am.  Being asthmatic, doing the right drugs at the right times, taking the precautions, going through the motions are so ingrained in me that I take them for granted.  Hence when people feel sorry for me, I can’t stand it, cuz my life doesn’t suck.  But if there was a cure in my lifetime, it would take some getting used to.  (Though wayyyy easier to get used to than if I woke up male or Mexican or in the 19th century…)   I mean it would be awesome.  But life with no inhalers?  No getting out of breath or coughing ever?  Hah, what?
Have a happy and healthy WAD, everyone 🙂

 

asthma / guest posts

rona’s asthma story: persistent asthma lessons on world asthma day 2013

• by kerri

May is Asthma Awareness Month, and World Asthma Day is this coming Tuesday. This month, I am hoping to CHANGE as many perspectives on asthma as possible . . . by SHARING as many perspectives on asthma as possible!  I am blessed to have many people in my world sharing in the asthma journey with me, who are also willing to contribute their own stories over the coming month.

I am excited to introduce you to my friend Rona, an occupational therapist living in Chicago. Among the very first of my “online friends” I met offline, I was lucky to be able to meet her for dinner back in August 2011 during a whirlwind trip through the Windy City. Rona is such a sweet and compassionate person, and I am lucky to be able to share part of her story of HOPE today.  Thanks, Rona!

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I was diagnosed with severe persistent asthma in August of 2007 at the age of 52.  After a lifetime of seasonal environmental allergies, bronchitis, and pneumonia, my lungs never really were very happy.  I lived in three different areas of the United States, but ended up coming back to Midwest America for many reasons.  As it turned out, my lungs absolutely rejoiced here in Chicago, a large industrial city.  Living far from the industrial side of the city, the air is relatively clean here.

I went through all of the stages of anyone else with any chronic illness.  Denial that this could actually be happening to me progressing to truly accepting that I do.  I embrace the fact that it is part of me, but it does not define me.

If you should meet me, you might notice the effects of prednisone on my form, but other than that, you don’t see asthma.  Back in 2007, you may have.  This visual change, this lack of shortness of breath, is what has enabled me to move on with life.  Without saying, my less than loved rescue inhaler is an external hard drive for my lungs.  Always plugged into my pocket.

Armed with many drugs consumed and breathed daily, I still suffer with exacerbations every 2-4 months, depending on unintended exposures to my numerous triggers.  Still, those in-between moments are wonderful.  I never could have believed that I could have a full life and have severe asthma.  As I danced at both of my daughters’ weddings this last Fall, this is testament to my lungs playing a minor role in my life.  I write this to thank the doctors that nursed me back to health, regulated my recovery and always encouraged me to follow their multi-lined detailed “asthma action plans”.  I owe them my life, to be sure.

With this said, I know not all of us have the same quality of life. There are many worse and many better than I, however one thing is for certain:  Life goes on and each breath is hope for yet another one.  Let all of us take a moment to look forward and hope for a better tomorrow for the very young and the very old all suffering from asthma worldwide.

I’d like to take this opportunity to add my two cents as someone who has experienced asthma.  I, and so many others, know its impact on family, career, community, and the world.  It is time to continue to do more than limit exposure to the triggers.  What else can we do?  Looking to the researchers and the funders of this research to lead the way to the answers.  There are just too many suffering from this.  We need to look at education of both those bearing the burden and those in our communities who don’t understand, to take them and walk with them until they do.

Finally, I thank you “asthma” for joining me in my walk down my own path of life.  It’s been interesting, hasn’t it?  Although you took my furry pets, my dust-ridden stuffed animals, my spontaneity and many of my life’s choices, you have taught me persistence, and for that, I respect you.  Now leave me alone, will ya?  <3

asthma

the distance to here: find me at MyLifeMyLungs!

• by kerri

Next week is my fifth asthma-versary [is that a thing?], so it was perfect timing when my friend Jenni asked me to write a diagnosis-related guest post on her blog, where she writes about life with asthma, and a bit of a mystery joint problem, rolled up with what she dubs “the troubles of being a teenager”. Thanks for having me, Jenni!

Please join me today over at Jenni’s blog My Life My Lungs, where I’m uncovering a bit of “The Distance to Here: Five Years Later“.

asthma / badassmatics / life

assessment and asthma clinic updates

• by kerri

Got a slew of appointments over with this past week. While I hate having them all piled up, it’s nice to know that I get a bit more of a break. I had ophthalmology two weeks ago, and things are still the same–with ophthalmology, that is really all you want to hear.

Tuesday was asthma clinic. My current respirologist is awesome. I originally got into her to try to get into a research study, but the specific program folded (or so it seems), so she has just morphed into my asthma doctor. Did the PFTs, gave my list to the clinic nurse, and got herded into another room so the doctor could stick things in my nose (I’m on intranasal steroids, but they have been a bit less than perfect lately). Apparently there were issues in there, so I have to go to the Ear, Nose and Throat doctor–boo. I’m also supposed to start doing saline rinses before snorting the steroids [hah. Badassmatic at its finest].  I tried my first sinus rinse today and aside from spraying saline all over the bathroom, I couldn’t do it right and I hated it and it felt icky.

Nobody seemed to care too much about my exercise tolerance being kind of sucky, so I suppose I am working on that myself. Which kind of means I need to exercise.  We swapped my Symbicort over for a newer combination inhaler, Zenhale. It has a stupid name, but I hate the delivery device of Symbicort, so I am back in happy MDI+spacer land. The hope is that after a few more days on Zenhale I can start trying to [successfully] lower my Qvar, which has been my magic medicine. Fingers crossed!  My PFTs were good, but medicated I think they were my lowest to date. The numbers are still nothing to complain about!  My best PFTs ever, my FEV1 was 111%ish (how much air is forced out of your lungs on the first second of expiration), and my FEF 25-75% was 90% [this number is how well the small airways are working]. Tuesday’s PFTs, FEV1 – 95%, FVC (forced vital capacity) was 90%, and FEF 25-75% was 74%. Still excellent, still (aside from some indicated obstruction in the small airways) normal. But, especially that 74%, reminding me that things are not perfect. But . . . they are good! (FEF 25-75% becomes abnormal under 65% according to Googleyness).  I am doing really well on the Zenhale so far . . . so fingers crossed it stays this way!

Wednesday I was back getting tests of my head done–some Individual Achievement Test thing. I was outsted for not knowing my multiplication tables, and then I redeemed myself because I can spell well. This test will take about a month to score. And I still don’t know why they were doing that one. The ADHD assessment part is complete, so this test was something totally different [for what I have no idea], but with that the results are not pointing them either to a definite yes or a definite no. Thus, my mom is going in to answer questions or something soon to see if she can give them any information that I couldn’t.  Tuesday’s tests were also accompanied by some random school-related questions that I was not expecting (What’s your GPA? How many credit hours have you completed so far? Do you have any accommodations for tests? Are you distracted during tests? Do you have enough time? So, other than getting the big picture, I am not sure what that was about…).  It is a very long process, but, I think it will, in the end, be worth it and I am happy that it clearly appears that they are doing the most thorough job possible. It will probably be another month before I know anything more (I was hoping to know much sooner than that what the results of the assessment were). To everybody who has sent me some encouraging words about this process, thank you so much. I cannot tell you how much it means to me to have your words in the comment form, in tweets and Facebook messages and e-mails.

Thursday I saw my primary care doctor. Nothing new, especially since I just had asthma clinic. Re-running the blood work we were supposed to repeat months ago, told her my iron will be no better since I quit taking the pills when I went on prednisone in the Fall so as to not screw me up and also I lost the pills, and she just laughed. I guess if I am not 100% compliant, I am honest, right (She also thought it was funny that when she came in I was like “Sorry, need to put all my electronics away. If I turned my phone off every time I was supposed to in a waiting room, I would never accomplish anything.” She just laughed and was like “That’s fine!”). Anyways, once again, uneventful appointment. Except, I essentially got in shit because both my primary care doctor AND my resp doctor were like “Okay, you need to be back onto two puffs of Zenhale,” (slash Symbicort). I am not a fan of this business, to be completely honest. I was doing really well on one puff twice a day, or so I thought, I don’t know what led them to this decision but they seem to, possibly without even talking to one another, be in cahoots about it (because it seemed that the primary care doctor had not yet heard about how asthma clinic went).

So, just have to go get the vampires to take my blood on Monday, deal with the ENT whenever that happens, and . . . then all of the waiting continues.

mapped out my mind / trying to find / a place that don’t exist […]

things change / and they’re not the way you thought they would be.

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