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

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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.

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“.

My friend Mike started a thing called “Mirror Mantras”, where he posts a positive or motivating phrase on his bathroom mirror to keep him inspired throughout the week. Here’s mine for the week . . . while I try to conjure up coherent thoughts on today’s senseless tragedy that arose from such a large celebration of sport in Boston.

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On the 12th of each month, a bunch of bloggers from around the world take 12 pictures of their day and blog them.  Here are my pictures for April 12th, 2013!

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9:33 am – vaughan. I was lucky to get my 12:30 doctor’s appointment moved up to 9:30 [also known as “come whenever” because the assistant loves me]. I’m always mildly curious about this store.

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9:36 am – doctor. I pointedly ignore this sign. One time, my doctor walked into the office and I put my phone down and took my earphones out of my ears, saying “You know, if I actually listened to those signs and turned my phone off whenever I came in here, I would never get anything accomplished.” My doctor just laughed and told me “That’s fine.”

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10:02 am – doctor’s office. I make faces while waiting, apparently.

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10:12 am – lab. Classy, Dynacare. Classy.

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10:13 am – lab. Doing a full check on the anemia today, apparently. I told the doctor “Okay, if they’re going to take blood, can we check more than just one thing?” Hemoglobin, platelets, ferritin (storage iron), iron and TIBC later. I think Complete Blood Count was checked off somewhere, too.

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10:16 am – lab. This process is all very quick after I actually saw the doctor. I got the grown up needle this time. And I got to tell the phlebotomist all about 12 of 12, and she tried to tell me good times to take the pictures so they’d be cool :]. She was awesome!

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10:24 am – vaughan. I honestly walked by this puppy in the window, thought it was fake, and had to turn around and do a double take to determine its realness. Verdict: real puppy!

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10:35 am – school. Bought my textbooks for my spring course so I could take one of them to Accessibility Services to be sent off to be made into an eText so I can audio-ify it. The AS assistant is awesomesauce, and we had a fun discussion about this course and how she wants to take my books and read them. :] (And Starbucks. And how it needs to be the weekend.)

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12:06 pm – boon burger. Best. Vegan burger. Place. Evaaaar. DINOSAURS.

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12:39 pm – car. If you have a tea reading done, do you get to drink the tea?

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4:14 pm – gym at work. “Miss Kerri! The chicken’s leg fell off! [Gym teacher’s name] puts them on top of her pens when that happens! Put it on your pen!”

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5:45 pm – front lobby. Out of work early. Pre-coaching dinner.