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

health + fitness / life / nutrition / wellness

only part of the story: nutritional deficiencies

• by kerri

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I’ve had a really hard week, both physically and emotionally.  While I’ve had anemia caused by iron-deficiciency for over a year, it has never, ever, kicked my ass as thoroughly as it has this past week. And in reality, it snuck up on me. I knew I was feeling more tired; I knew I was having more problems keeping up to my life. But it very, very quickly spiralled into something I had never experienced–an unignorable feeling of exhaustion, of tiredness, and ultimately it has let me, for the better part of the last week, unable to function.

I would not be surprised if other nutritionally-based deficiencies were able to kick peoples’ asses the same way that my iron-deficiency kicked mine.  The problem with nutritional deficiencies, though, are that people automatically perceive that you are not eating properly. I have to be extremely clear here: I am in no way a vegetarian nutrition superstar, and I am NOT solely trying to defend myself. I know that I do not always make the best choices. But even if you see somebody’s nutritional choices for one hour, one day, or one weekend, you are not getting the whole story of what is going on in their overall life–or in their body.

Last Thursday, I hadn’t been feeling well–well, nor had I been as of Tuesday of last week, either. I was extremely tired, but for the most part was pushing through. Maybe I took a nap when I got home from work in the morning, and maybe I didn’t feel quite right, but I was functioning. It had happened before, and I assumed that eventually things would balance out as had happened before. I kept taking three iron supplement pills a day as I had been for the past six-plus weeks consecutively, and figured that I’d catch up on sleep over the next weekend, and that I was feeling run-down from spending the past weekend in the US with my coworkers.  I got home from work before 10:30 that morning after a typical 7:30-9 shift, took a nap for an hour, and felt okay. Not great, but okay. A couple hours later, though, I was feeling much worse and made the difficult choice to ask my boss if they were able to cover me for the afternoon.

And thank God I did, because by 6:20 on Thursday night, I experienced some intense dizziness while doing dishes, and for some reason wandered into the bathroom. Where I nearly passed out and pulled a towel rack out of the wall in the process. In a flurry of dizziness, I stumbled from the bathroom to my bed where I spent the next nearly five days.  I realize now that it is completely possible if I had pushed myself and gone to work when I wasn’t feeling right, I could have crashed at work.

I’ve slowly been recovering. Very slowly. I spent nearly five straight days in bed. Yesterday, I spent about eight hours simply sitting at my kitchen table on my laptop, and I was exhausted. I have never experienced tiredness like this, and the feeling of slowly coming back from a place where my body had become extremely depleted, of not only iron but potentially of blood. We’ve been in contact with my primary care doctor and my gynaecologist, both of whom I see tomorrow.  I am working really hard at timing the consumption of my iron supplements better with added vitamin C, like I have tried previously, I am working at increasing the iron in foods I am eating . . . I am trying.

My diet may not be stellar. But it is only part of the story. And it is seemingly the only part of the story that people seem to want to pay attention to.

Because it has a simple solution. Because I can make the choice to modify that part. Because it is easy to lay blame.

I have spent a year beating myself up over this thing. About how my hemoglobin keeps dropping despite the fact that I’m taking the pills that frequently make me feel sick, that I am trying to modify other choices I am making.  But the reality is, is if my body can’t keep up with the iron that it is losing, it is never going to be able to replace it regardless of how hard I try.

Regardless of how much I blame myself. How much I blame myself for not trying hard enough. How much I blame myself for not being more proactive in my medical care earlier. How much I blame myself for what has happened this past week.

Because it is easier to blame myself for everything, than it is to accept that I don’t have control over 50% of the problem. Because with any chronic disease, lack of control over the situation is half the emotional battle.

When you’re feeling physically exhausted, it is much easier to blame yourself and experience all the associated anger, guilt, frustration and sadness all that more deeply.

And it is much easier to lay that blame on yourself . . . when others are laying it on you too.  When they’re lecturing you about how wrong you’ve been in the choices you’ve been making for yourself. And when it’s coming at you from all sides: family, friends, coworkers–people who are trying to be well-meaning, but are the ones who are completely contributing physical, emotional and spiritual burnout unintentionally.

I am already blaming myself. I do not need another lecture or a reminder that maybe I’ve fucked up.

And neither does anybody else with symptomatic iron-deficiency, or any other sort of nutritional deficiency or medical condition–yet many of us experience it too frequently.

I’ve experienced too many full on lectures or related comments from well-meaning people this last week. People who I love deeply, who I know are just trying to help me be healthy.  But you know what? When my body is already feeling like shit, that means my mind is already feeling like shit: a lecture is not helping. What does help?

The support of my friends. I love all of the people in my world. But like most things, once the first couple days pass of being sick from whatever cause, people fade out. If you want to help, stick around–even if we are not too interesting laying in bed, we really do appreciate that you are taking the time to simply be there for us.

Being supportive doesn’t mean giving me a lecture on how to manage my health–you are not in my body, and you are not my doctor or dietitian. It can be as simple as talking to me about something completely unrelated to distract me from how I’m feeling, or shooting me a quick text. Or posting something goofy to my Facebook or tweeting at me. Or learning alongside me–it is so simple, but my friend Steve simply asked me “What foods in a vegetarian diet are rich in iron?”–not only was this in no way judging or condescending, it showed that he cared enough to want to learn more.

Support doesn’t have an agenda.  Neither does friendship or love.

 

Note: This post is not aimed at anybody in particular. Its more about the force of accumulation.