Chronic Roadtrip / friends / health + fitness

chronic roadtrip – #hawmc day 8

• by kerri

HAWMC_2012_dayprompt-8.png

As I was tweeting with Mike earlier about the difficulties he and I were having with this prompt, I was blank. I was so, so blind to the fact that I have been having an amazing conversation for the last twenty-four or so hours with friends, new and old, on Twitter. The thing about Twitter conversations is that there are so many that are so full of goodness, I often find myself lost in the ideas and not present in the conversation that builds these ideas.

I cannot recapture all of the conversation from last night with Jamie, Larry, Tom and Carrie Lynn, because there were too many ideas, too many tweets, and too long of an amazing discussion of an eruption of tweets, rapid-fire, between two countries–one state and two provinces, Twitter, the facilitator hepling to make our big, big world just a bit smaller. It spawned from my mention of trying to get myself to Toronto in August . . . and then the volcano erupted.

Chronic Roadtrip was born.  A journey being discovered, a plan being determined, a purpose being ignited. A spark we want to spread into a flame of empowerment for people with chronic diseases, like Jamie, Larry, Tom, Carrie Lynn and I.  Except they [ahem: Tom] are going to steal my pancreas as mine is kickass [read: I don’t have diabetes], whereas I’m going to cough while their pumps and meters beep, and Larry’s guide dog Keeta barks.  It’s gonna be an epic chorus in our adventure, wherever it goes.

There is very little solidly determined to formulate a road map, and very little I can say, especially at this point in the journey.

If we are even to make it happen it may involve August, an RV and plenty of adventure with a purpose: education and empowerment.

Ready, set, go, go, go!

asthma / badassmatics / health + fitness

knowing when to step back: i could use a little break.

• by kerri

Along with knowing how hard you can push yourself, there’s also that fine line of knowing when to step back.

Throw chronic disease in the mix, and that line blurs even more.

For me, it’s evident that I don’t exercise when I’m not breathing at 80+% of my best peak flow [aka in my yellow zone]. Especially right now when I’m not even doing anything and am breathing in my yellow zone. Something earlier compelled me to attempt some push-ups. Because I’m a genius. Three of them and I was on the floor, and not in push-up fashion [granted right now I am doing modified push ups. But that is 1) better than no push ups and 2) another story for another day].

Oh right, and the whole mom quote of the day saying “Yeah, you don’t sound healthy when you cough.” Thanks, Mom. Thanks. [That said, I have a normal, baseline cough. It is not as brutal sounding or feeling as this sick cough is. Sick cough you can totally tell there’s rattly gross junk in there.

And it sucks. I’ve essentially gone from almost 30K last week to zero, which will remain zero unless I get better. I threw some bicep curls in tonight while printing an assignment because really, 3 x 10 with five-pounders = not terribly taxing on the lungs and at least I did something a little good. YES, if I’m just flaring mildly, I often do throw a workout in there. I probably shouldn’t but I do. I catch a cold though, and everything gets put on hold, because my lungs don’t take that well.

That’s what’s brutal. That I may actually end up backtracking having to take a week [or more] off of working out. I’m averaging about six hours of physical activity per week, probably about four or so of those in actual workouts, and the rest in commutes and stuff. I’m 21 kilometers behind where I was in October for November, which is something I definitely would have caught up with this week if I wasn’t sick. Thank goodness i’m not training for anything [training? What’s that?]

It’s brutal when I was so excited to tell my doctor on Thursday that I’m doing fantastic and exercising for like four hours a week and so on. And now I get to go in and tell her I’m burnt out on the asthma shit and can we please get me in and out as quickly as possible so I can go on with my life outside of my currently screwed up lungs.

Oh, Mom and Grandma, if you’re reading this, consider this your disclaimer on the fact that I’m about to give asthma The Finger in this picture and drop an f-bomb in the next paragraph:

Last night, today, THIS is how asthma makes me feel. Pissed off and exhausted and angry. Fuck asthma. Screw the nebs and the inhalers, the jitteriness, the coughing, and the not being able to clear this shit out of my lungs. I’m waking up several times a night, and have done so multiple nights this week, and then I have to be awake and think about how while this flare and this cold are temporary, this disease is forever. And how I will have to do this again at some point after I get better. And that’s something that’s hard to think about. It’s much easier to deal with when I feel okay and I can just not have to deal with thinking about it until I get sick or flare again. I realize I have no idea how I went through months at a time of feeling like shit without a burnout. I have no idea. The intensity of it increases and decreases, but this intensity is what some of my friends with asthma face every single day and then some [also, to break the seriousness for a moment here, totally starting a giving asthma the finger project over here on Facebook. Because it’s therapeutic].

Last night I was burning out on the asthma stuff hardcore; it was honestly the lowest I’ve felt in years about something in my own life. Today I started out rough but have been trying to step back in a different way; push it out of my head, focus on one doubled-over coughing spasm at a time, one inhaler or neb at a time, one breath at a time.

Yeah, I need a break from this. That’s not going to happen, and I’ve accepted that. I know I will get better from this, but I also know that it will happen again. Because you can never let your guard down — you can’t just stop the inhalers, the doctor’s appointments, the germs, the nebs, the medication-induced jitteriness and tachycardia, the frequent hand-washing, the thoughts of every little step involved in taking care of yourself. And you know what, this is my reality. Nobody gave me a choice in the matter of having to share my body with asthma, but I do have the choice in how I perceive it [own it] and how I fight it with every last thing I’ve got.

And if I can have even just one more little piece of control in this that is in my control and doesn’t come off of a prescription printout, I want that. I want to throw all the fight I have into this disease — not just for me, but for everybody. And being able to share that with everybody–that your healing, inside and out, your body and your heart, doesn’t have to come from a pharmacy. That little piece is a big piece of my life: exercise.

But for now, it’s nebs and Watch The Sky on repeat.

Trying to remind myself that: even if today was a good day wasn’t true for today, it can be true for tomorrow.

i’m lost at sea. the radio is jammin’ but they won’t find me. i swear it’s for the best, and then your frequency is pulling me in closer until i’m home. and i’ve been up for days, i finally lost my mind and then i lost my way, i’m blistered but i’m better, and i’m home

i will crawl, there’s things that aren’t worth giving up, i know. but i won’t let this get me, i will fight. you live the life you’re given with the storms outside — some days all i do is watch the sky.

this room’s too small, it’s only getting smaller, i’m against the wall. and slowly getting taller here in wonderland, this guilt feels so familiar and i’m home

i will crawl. there’s things that aren’t worth giving up, i know. but i won’t let this get me, i will fight. you live the life you’re given with the storms outside — some days all i do is watch the sky. some days all i do is watch the sky

i think i, i could use a little break. today was a good day. i think i, i could use a little break. but today was a good day. and it’s a deep sea in which i’m floating, still i seem to think that i must crawl. there’s things that aren’t worth giving up i know, when you can’t bear to carry me, i’ll fight. you live the life you’re given with the storms outside. some days all i do is watch the sky. today was a good day. today was a good day.

watch the sky, something corporate

asthma / badassmatics / health + fitness / wellness

exercise and chronic disease : sharing my asthma story

• by kerri

I’ve written exactly one blog post about the intersection of exercise and asthma.  Given the fact that asthma management is a pretty big modifier in how I exercise, and that both topics are really important to me from a personal standpoint, maybe it deserves a little more attention here.

So let’s start at the beginning. In grade eleven, the year I was diagnosed with asthma, gym class was not mandatory. This is likely both a blessing and a curse in that 1) My asthma was not managed well; 2) I did not have a family doctor, thus contributing to point 1; 3) I had not done anything more than a 1K walk since grade ten; 4) Being required to be physically active would have likely made me catch my asthma earlier and receive proper treatment sooner [Read: for me, “take your blue inhaler and you’ll be fine” is not proper treatment].

Fast forward to August 2008 — I’m using my rescue inhaler three to four times per day every day, and was symptomatic between doses finding myself awaiting the four hour mark so I could take my inhaler again (in that regard, I’m sort of a badass now and will dose more than two puffs every four hours if necessary).  Two months into my mandatory grade 12 phys ed classes I finally got put on additional asthma medicine (FloVent), which didn’t help as much as it should.

Fast forward to January when something made me decide to take dance of all things (how rad is it my high school had a dance class?).  Yeah, still got the uncontrolled asthma going on, still winter (my bad season), and now I’m basically going from zero to sixty in terms of exercise.  That’s gonna go well, right?  I spent more time than I care to sitting on the sidelines on days that i just couldn’t do it.  I started up on Singulair midway through the term, which was later discontinued as it was decided it wasn’t doing anything.  Towards the very end of my grade 12 year, I was started on Symbicort in place of the FloVent, and things finally started feeling a little bit better.

Around this time, midway through the term, I think, is when I connected with Steve, who has since become an amazing role model and friend. Steve was imperative in helping me get the asthma sorted out better and totally awesome in encouraging the physical activity. I strongly believe that if it weren’t for Steve that I probably 1) wouldn’t be a kinesiology major right now, and 2) would likely have just started sitting on my ass again after dance ended in June.  I started fitness walking around this time until it because freezing.

Fast forward again to midway through first year. It’s the winter, early 2010, the asthma sucks, and I start going to the gym. In no way was my asthma controlled, but it was better than it was nearly two years later, and I was sick and tired of waiting around for something good to happen. So I go to the gym. Take my inhaler beforehand, whatever, go give’r.

Here’s the deal: I went to the gym again today, and the issue is kind of just the same.  Especially in winter (granted, it is currently unseasonably warm, so I’m doing better than expected) I just cough a lot. It doesn’t really matter what’s up, good day/bad day, I just cough a lot, especially when I’m exercising. It’s one of the reasons I hate going to the gym, because I hate people staring when I cough like the guy beside me was today, and I hate grossing people out.  I hate freaking people out.  I’ve had enough of those experiences too–grade 12 gym when I crashed on the bleachers following running the last two minutes of the twelve minute run after walking the bulk of it because i was so freaking tight and didn’t know it was okay to take my inhaler again since I’d just taken it.  Then, in like, 2010 or something pushing myself way too hard and getting way too tight on the elliptical and having to stop, use the wall to support myself and take my inhaler. My friend who was beside me basically had no idea what was going on as she’d never seen my asthma get that bad before.  So the freaking out people thing? I’ve done it, and I hate it, and I try really hard to avoid that kind of stuff.  Like, at the start line of my first 10K, I took my inhaler and my coworker, standing beside me, didn’t even notice.

It’s why I prefer to work out alone, because then I can cough and cough up shit and nobody is there to get grossed out, and not have people staring at me every time I cough like the dude in the gym yesterday on the bike beside me. Like, sorry? [Related: No, I wasn’t breathing great at the gym, or before for that matter, so I was awake at 6 AM and don’t feel so good today, but in my mind it’s worth it.]

Since then my medication regime has switched up and things are better. It takes me three inhalers daily and usually a daily hit or two of the rescue inhaler (at least). But you know what? I’m doing it. It’s hard and it sucks sometimes, but it’s worth it.  It’s even more worth it when on occasion I can kick my non asthmatic friends’ butts endurance-wise, or in that ‘yeah, i have kinda shitty lungs and still do this, so . . . what’s your excuse for not taking care of your body?’

So yeah, exercise is still a current issue. That may never change. I just basically don’t care anymore, I try not to let myself be limited, and if this is as good as it’s getting, then I’m just gonna keep pushing unless I’m having issues when not exerting myself.  I’ll probably never be a great athlete, but what counts is that I’m getting out there and doing it and trying.  My current goal come spring will be training to walk a half marathon in Fall 2012.  Maybe I’ll feel like an athlete after that or something.

Yeah, chronic disease sucks. And yeah, it makes stuff in general way harder. But your body can only give you what you give it.  So what choice are you making on that?  Grab your goal, make your plan, and go for it. Whether it’s being able to run a marathon or walk up your stairs or play with your kids . . . you can do it. Own it.

What’s your story? Leave me a comment, or e-mail me about how you’re kicking ignorance through fitness.  Because unlike asthma, CF, MS, COPD, diabetes, heart disease or something else you may be facing . . . ignorance is a curable disease.  I’d love guest posts on the subject, so if you’re comfortable and would like me to share your story here, I’d be honoured — just let me know.

advocacy / guest posts

guest post! | “my name is . . .”

• by Awesome Guest Blogger

I always get really excited when I meet people who are named Kerri(-with-an-I).  Yesterday, I received a request on Twitter from another Kerri to guest post [the second one this week, actually.  We Kerris are into advocacy, it seems!].

Kerri has Myasthenia Gravis, an incurable autoimmune disorder that affects the neuromuscular system, and uses social media to educate others about the condition.  In addition, she leans on the Eternal Rock to help her cope, and her faith in Jesus shines through in both her blog and her guest post here.

Thanks for sharing, Kerri!

—

Kerri Sweeris

I am shocking.
I can hurt you.
I will devastate your life, and change it in ways you could never imagine.
I can be the worst thing to ever happen to you, OR
I can be the best thing to ever happen to you.
I might take away your ability to work,
or walk
or laugh
or breathe
or see
or think clearly
or even live.

My name is chronic illness.

I will damage the connection between your nerves and muscles.
I will effect your ability to speak,
to swallow
to walk without falling
to hold your own head up
to breathe on your own
to go out alone
to be independent
to live a “normal” life.

My name is myasthenia gravis.

I will save your life.
I will cause you more trouble.
I may make you gain weight.
I may make you grumpy
or tired
or weepy
or hungry
or sad.
I usually help more than I hurt, so you keep me.
I may make you feel trapped.

My name is medication.

I can save your life.
I can give you a reason to go on.
I can bring you back from the edge.
I can make life bearable.
I will never give up.
I will help you fight when you just don’t want to.
I will help you go when you just want to stop.

My name is HOPE.

“I am the Way, the Truth and the Life.
I am Freedom.
I am Emmanuel.
I am the Prince of Peace.
I am the Healer.
I am Wonderful.
I am your Counselor.
I am your Savior.

My name is JESUS.”

—

Kerri Sweeris is a wife and mother of one miracle child, a 5 year old named Jacob.  She gets through life with the encouragement of good friends, a lot of humor, and by the grace of God.  Kerri blogs at Sick of MG – Living with Chronic Illness.

advocacy

coexistence

• by kerri

I walk across the loop between the athletic centre and the main campus building. The cold fall breeze blows my hair in front of my face.  As I push it away, I look at the people around me, people I don’t know.  I then look at the people i know: my friends, my family, my classmates, my instructors, my coworkers, the kids at work.  How many of them, like me, have an invisible illness?  How many of them have an understanding of the rigorous schedules, symptoms and unrelenting attention required to manage their disease?  How many of them fight their body day in and day out and still, like me, look totally healthy on the outside despite what may be going on inside or behind-the-scenes to keep them healthy?

And I will never know.  Some of the above people share their stories with me.  Some of them choose to keep their stories silent and invisible.  And some I will never even speak to or see again.

Yet all of us, possessing an anomaly settled inside, move forward–awaiting the day where our elusive cures will come.