Weightless, Nada Surf

About a month ago, my friends and I went wall climbing.  It is an awesome climbing gym, and we’re planning on going again sometime in the near future.  My friend Dan and I are big into incorporating DOING something into our get-togethers.  While eating is doing something, and we usually do that after, we kind of like getting something to be active about before we eat a bunch of food.  So we play ice hockey or ball hockey . . . or go climbing!

(On that note, at about 11:30 every night, my Fitbit tells me to CLIMB IT. And I tell it “Chill, I am going to bed”.)

Climbing is not an activity I am exactly good at [okay, let’s face it: I am the girl with the proficiency barrier. I do not move skillfully in the majority of regards].  But I really enjoy it, and not only is it a really good workout and my lungs are pretty okay with it–I really enjoy the aspect of being able to exercise AND breathe well at the same time, but I think there is a thrill in it and an amazing high associated with it [literally and figuratively] that is very unique–at least that is what I experience [I am pretty high on life in all regards . . . no drugs needed . . . but sometimes I just get REALLY stoked about things!].  Before the climbing event, the last time I climbed was in grade 12 PE, so it was due time I got up there again!  So, not only do I go out of my way to organize these sorts of crazy climbing events, I totally try to climb whenever I get the chance!  [This is probably totally the fault of my friend Steve at Living Vertical, who is climbing every day in 2012–props, dude! He is full of motivating, and he and his wife Stefanie are full of awesome in all they are doing!]

Tonight, our church’s youth event was to tour a new youth centre and try out their activities, such as an indoor skate park, a gym for basketball and volleyball and stuff, video games, and . . . a climbing wall!  So, of course, I was encouraging the girls in the small group I was leading to get up there!  And, of course, leading by example is the way to go, right?

“when you reach the top”

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“as you bottom out

but you understand what it’s all about”

–Love Just Is, Hilary Duff

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This is how I finish a rappel, apparently.

It. Was. Awesome.

When encouraging people towards living more active lives, I always try to stress that there is NO positive change that is “too small”!  I find people really minimize their accomplishments if they are starting slowly, and this is really unfortunate because small steps can lead to big change AND show others that anything is possible . . . and everybody has to start somewhere!

Today, my friend Clare from the UK [who uses all kinds of UKisms. I am a fan] shares her story of her journey with severe asthma and a downward spiral of negative choices with profound negative impact on her health . . . and her recovery.  Her recovery lead to the motivation she has found to keep moving forward with exercise following rehabilitation for steroid-induced myopathy [extreme muscle weakness/wasting]–her dog, Pip, and a marked improvement in her asthma!  Her journey began through walking: an activity that seems deceivingly simple . . . and has helped her go farther than she’d ever dreamed!

—–

clare%25201.jpgI have had asthma since I was small. I am now 27 and I’d love to say it hasn’t had an impact on my life at all but it’s basically dictated most of my life.

From a young age as well as asthma attacks I also had epileptic seizures frequently. I always had an inhaler on or around me and relatives also had inhalers kept at their houses for when I stayed. One of my earliest memories from childhood is not a happy one playing, it’s of me sitting in my buggy unable to breathe, my mum giving me ventolin syrup and yucky intal. Most memories seem to involve a time of fun times being cut short by an asthma attack or epileptic seizure. Apart from that I was quite a normal little girl!

I had lots of time off school. In my last year of primary school I had 6 months off school for repeated pneumonias and lung collapses that left me very ill in hospital. After that episode every cold or viral infection had me ending up in hospital. The attacks just got worse and worse, I began to need more and more drugs to control them and was often hooked up to IVS for a long time. At the age of 10 my consultant decided a home nebuliser was the only way forward. It didn’t help really just made me more reluctant to go to hospital. I could have nebulised steroids via it but that didn’t really help much. All through my teens it continued with me ending up in hospital every few weeks/months with a bad attack. My epileptic seizures had thankfully stopped so I was glad of a reprieve from them.

I just wanted to be like my friends and at the age of 15 rebelled big style. I tried smoking and would regularly get drunk on a school night and sometimes joined my friends in smoking weed staying out till all hours. I continued to have regular attacks, and in between my asthma never let up—I was constantly attached to my neb but hated to say I was feeling ill, so I’d wait until I could take no more before reluctantly asking my mum for help, I just hated the attention. One day just after I had started my last year in senior school I woke up having an attack, what was different was this one came on so quick, and within minutes of the ambulance crew arriving I was unconscious and had stopped breathing, my heart slowed down . . . if it wasn’t for the prompt action from the crew I’d probably gone into full cardiac arrest. When I woke up I was on a ventilator in ITU [editor’s note: this is what our friends across the pond call the intensive care unit].

I was in hospital for a month recovering, I was so scared at first to go home and that it would happen again that I kept making excuses not to go home, eventually they realised and I was able to talk through what had gone on and any worries I had. I wasn’t home long within 2 weeks I was back in hospital with a very bad attack that needed very high amounts of steroids, it lasted a long time and I was in bed for 2 weeks. That coupled with the high amount of steroids gave me steroid myopathy. I couldn’t walk at all it was quite scary, I went to get up after being in bed for so long and my legs just could not take my weight, they wouldn’t do what I wanted them to do. I had various neuro tests and finally an EMG revealed very weak and wasted muscles in my legs. I had intensive physio, at first I could only stand up straight using a special standing frame with the physio, we then after weeks of hard work moved on a rolator frame, basically a Zimmer frame. I couldn’t go home as we had too many stairs and I was too weak. I had missed so much school it was decided I’d fall back a year so whilst in hospital I started to attend a special school for people with problems. To cut a long story short I was in hospital for 6 months having physiotherapy. It was very strange being back home after so long! Due to the myopathy, for a while the doctors were reluctant to give me any oral steroids, if I needed them they would just hit me with tons of reliever and IV aminophylline.

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I finally left school aged 18, college wasn’t for me trying to be independent I moved out of home aged 19, I hated the fuss. I got a job as a care assistant, my long term goal was to become a nurse. I worked for 2 and a half years, struggling into work every day. I did have a bit of a reprieve from the life threatening attacks for about a year, no hospital admissions for a year! It didn’t last long, work understood when I was poorly I’d be off for quite some time. Then in February 2005 an attack that didn’t get better, all IV drugs failed I was getting worse they took me to ITU and I had to be put on a ventilator again. My family were told to prepare for the worst. After 10 days ventilated I pulled through, recovery was tough. I was in hospital for 6 weeks. I couldn’t return to work, just getting out of bed left me gasping for breath.

I got depressed not being able to work, I piled on the weight. The longer I was off the more scared I got, the more depressed I got, I lost all confidence and hated going out. I used a mobility scooter when I was brave enough to venture outside. Asthma did that to me! Still in and out of hospital the doctors didn’t know what to do with me. For 3 years I was a recluse, the safety of my flat was comforting. I stopped taking some of my medication, what was the point it didn’t seem to help. Around this time I also found Asthma UK, I thought I was alone in my suffering, suddenly I found all these people going through the same! In September 2008 I was in hospital on IV drugs so long and unable to get off them without getting poorly again, I was started on sub cutaneous Bricanyl. 4 months in hospital with 2 weeks at home. I was now attached to a syringe driver 24/7 but once I was home and had recovered for the first time in years I felt better!

My symptoms had improved; I could walk again without gasping for breath and needing a nebuliser. Feeling better I also sought help for my depression,

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finally revealing how down I felt. I was put on anti-depressants and within months I was slowly feeling like my normal happy self. I enrolled on an Open University course, went on a diet and started doing some gentle exercise. I got a dog and he helped me with my recovery. I had to go out to walk him! The walks got further and further, the weight was dropping off and I didn’t have a hospital admission for 9 months. Unfortunately a cold turned into a nasty attack whilst on holiday in Scotland, I was very poorly in ITU. I recovered quickly and was soon back to walking and losing weight.

2 years on I have lost 7 stone [editor’s note: 98 lbs! GO CLARE!] and have completed 2 open uni courses. It’s been over 6 years since I had to give up work and now I finally feel ready to get back out there! I’ve been told not to rush things, so I’m not. I am currently looking for work but have a voluntary job 2 days a week at my favourite charity, Asthma UK! I love it and am learning so much. It’s been a great way to ease me slowly back into the world of work. I exercise regularly now, I walk 3 miles every day and am constantly out and about doing something, a total opposite to my once reclusive self, who would sit and watch TV all day eating rubbish food hiding from the world. I don’t even have a TV any more—who needs one when there’s so much of the world to see and more interesting things going on! If I’m bored I’ll go for a walk. I love exercise now! I wouldn’t have said that a few years ago, I would do anything to avoid any form of it! I know my weight and lack of exercise didn’t help my asthma, I’m determined not to get like that again.

Thanks to the right treatment and regular exercise for the first time ever I feel like asthma is not dictating my life. I still require a large amount of medication and have daily symptoms my lung function is still only 60%, to some I might not appear controlled but for me this is the best I have ever felt. I have had some admissions but they are not as bad and I seem to recover more quickly. My last one was Christmas 2010. I had not been in hospital for 6 months and was on a roll, the week before Christmas I got a nasty chest infection and had to spend Christmas in hospital. Not the first time! And now I’m whole year out of hospital! A little lie there I had a brief admission to get off my subcut Bricanyl in August, which went very smoothly and I am now line free!

Who knows what the future holds but while I’m enjoying this spell of good health I’m determined to make the most of it!

—–

Thanks for sharing, Clare!

Clare’s story has also been featured in That’s Life! magazine.  Clare lives in the UK with her dog, Pip, and is studying Health and Social Care with the Open University.  She is a volunteer with Asthma UK, the UK’s leading non-profit benefiting people living with asthma.  Clare blogs at Clarebear’s World, sharing her story of getting back to work, fitness, school, asthma, fun stuff, and life!  You can also find her on Twitter.

I’m on the road of least resistance / I’d rather give up than give in to this.

Promises Promises, Incubus

Over the summer, I read The War of Art by Steven Pressfield [yes, please note: The WAR of ART, not The Art of War], on recommendation by my friend Drew.  As one of the reviews says, it is a kick in the ass.  Unfortunately, it seems that I have left my copy of the book at the cabin.  Fortunately, the website for the book provides the exact section of the book that immediately hit me the hardest and forced me to read it several times in a row to fully comprehend.  This is the section on defining Resistance with a capital R.

Late at night, have you experienced a vision of the person you might become, the work you could accomplish, the realized being you were meant to be? Are you a writer who doesn’t write, a painter who doesn’t paint, an entrepreneur who never starts a venture? Then you know what Resistance is. […] To yield to Resistance deforms our spirit. It stunts us and makes us less than we are and were born to be.

The War of Art, Steven Pressfield

(Read more here)

Occasionally, the thought of Resistance-with-a-capital-R comes to mind.  Resistance is the force within me, or the forces around me, that freeze me.  Every time I skip a day of push-ups, every time I have “writer’s block”, every time I start a paper 48 hours before it is due, every time I hesitate on sending that e-mail that might dig too deep for somebody, every time I don’t write down a thought . . . this is Resistance.

No benefit comes of Resistance.

Each time Resistance wins, I lose.  The benefit from acting now might be small, but the loss from giving in to Resistance all adds up.  Now could have added up to hundreds of pages of writing, hundreds of good conversations, and more minutes of time with a positive impact within it.

“I’d rather give up than give in to this.”

It is now that I have.

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 January 12th, 2012!

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6:58 am – bathroom. As you can see, I’m doing the 12 of 12 pictures on my BlackBerry this month.  Here’s one of those “I AM USING MY SMARTPHONE IN THE BATHROOM MIRROR TO SHOW YOU I HAVE A SMARTPHONE!” pictures.

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7:57 am – gym at work. This is my friend Jess!  We work together and take semi-blurry morning pictures in the gym apparently!  We played soccer this morning [by which I mean we WATCHED THE KIDS play soccer this morning].

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8:20 am – gym at work. I spent far too much time deliberating what CAHPERD stood for [I couldn’t remember the R and the D], so I eventually made a mad sprint over to the banner to read it.  Canadian Association for Health and Physical Education, Recreation and Dance.  I think these banners are like, mandatory or something.  Also note the ball thing that looks like a smiley face.

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8:56 am – bus stop. Nothing like being outside waiting for the bus before even technically being off work! [We’re scheduled till 9, but the kiddos are gone at 8:45].

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12:09 pm – cafe. BRAP!  (Can someone enlighten me on the lingo?) The cafe has these nifty clear signs so as not to obstruct windows and fit in with the design and such.  These caused me to abandon Sam in the cafe, run up the stairs to grab my phone which was sitting by Tara, and then run back down to the cafe.  And, I got back before my London Fog was even ready!

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12:26 pm – athletic centre nap area. London fog in hand, time to get a little reading in before class.  Fit & Well seems like way too fluffy of a name for a book for a course called Scientific Principles of Fitness and Conditioning.

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3:47 pm – mom’s office. I took the liberty of putting my mom’s gone for the day sign up in her office

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4:28 pm – superstore. Look at the pretty balloons in the produce section! :]

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4:35 pm – superstore. Frozen pizza for dinner.

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4:41 pm – superstore. I’ve been on this epic mission for Special K Protein Plus. I think it is an American thing, as I cannot find it.  It has 10 grams of protein, and protein is kind of important . . . being a vegetarian, a little bit more focus on protein becomes that much more important.  Unfortunately, Protein Plus still has an edge on this stuff . . . it has 2 grams of sugar while Satisfaction has 13.  Why they’re sugaring up a perfectly good cereal is a mystery to me.  It’s also pretty high in sodium . . . I didn’t realize the sugar content till later, so yes, we bought it. (It’s okay, but that’s probably thanks to the 13 grams of sugar.)

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5:03 pm – kitchen. My beautiful friend Sara Brown in TO sent me some info on Visalus shakes and some samples — gonna try one tomorrow I think!  And as I’ve told Sara, while I believe that nutrition should come primarily from food, I know that sometimes that’s tough–especially with that protein factor as mentioned above.

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8:53 pm – kitchen. Here’s my Fitbit! (Review to come in a few days as requested by Mike!)  While my steps have risen by a few since taking this picture, I am definitely realizing how much harder it is to get the 10,000 steps in without working out — even if I did take sixteen flights of stairs today!  I actually LOVE this thing.  [To compare, yesterday I was at 12,084 . . . so basically double what I’ve done today].  Today was a rest day, fitness gains come in letting the body heal!  Back at ‘er tomorrow!  Also, how cute is my belt?

 

12 of 12 was created by Chad Darnell — and even though Chad is no longer hosting 12 of 12, it doesn’t feel right to end without giving him some credit!

So, yes, I am a giant dork [if that wasn’t already COMPLETELY evident], and I geek out about things.  Long story short, Jay mentioned in his post that he was a premie, and I was a premie, and I geeked out,  and then we had a short how many weeks early discussion, since that is what that situation calls for . . . and now his mom has been checking out some other posts . . . how cool is that? [Yes that totally called for that many ‘ands’. Yes.]

Really, this definitely calls for one of these:  HI JAY’S MOM! [Totally reminds me of when I was in high school and people’s parents used to phone them and we’d yell “HI [so-and-so]’s MOM!” through the phone while they were trying to talk. Usually repeatedly.  In the case of my friend Amber’s mom, it was always “I LOVE YOU, AMBER’S MOM!”].

I realize at this point on the blog, too, I have yet to actually mention my prematurity.

NICU picture 2, Weighing 3 pounds.  June '91

June ’91 – sometime within the month or so after I was born, weighing in at about 3 lbs, in NICU.

I was born 10 weeks early, weighing in at 2 lbs 13.5 oz. Like most premies, I had significant lung problems and episodes of apnea [stopped or incredibly slowed breathing] and required intubation twice [if I read the records right, they are kind of not fully legible], and had recurrent episodes of bradycardia [slow heartbeat], along with a heart murmur [which is still slightly present] and a severe patent ductus arteriosus — a congenital heart defect that causes abnormal blood flow to the lungs, and is common in premies because the whole physiology of gas exchange is different prenatal — that closed on its own, meaning that is a done deal.  I developed a staph infection, that caused sepsis [kind of like shock caused by an inflammatory immune response to the infection that affects the whole body… thank you Wikipedia] and joint problems (which lasted).  I also had diagnosed hearing loss [not an issue now] and cerebral hemmorage [common in premies . . . hey, I DO blame being a premie for making me weird, maybe this is an explanation! I also blame it for why I can’t do math.]

So that’s where I’ve come from, but how does it affect me now?

I could probably say that my prematurity doesn’t have that big of an effect of my life, simply because this is just how my body has always been, so I just don’t know any different.  That said, it has probably caused me to adapt in ways that I haven’t even recognized–though, I can share a few examples.

For instance, I always walk with people on my right side [and do this by habit, as one of my friends noticed when we were walking back to school one day in grade eleven], because I have extremely little vision in my left eye due to the retinopathy–glasses don’t help on that side, and all I can see are lights and shadows.  And, I really quite like seeing the people I am talking to!  My right eye is corrected with [very strong] glasses to be fairly normal, but not perfect. I think I have “floaters” in my vision field more often than I actually realize, because they have always been there [for example, I noticed them hardcore on Friday when I was out in the freshly fallen snow, because it was so freaking WHITE out there, but usually can ignore them pretty good].

Long story short, the thought is that my retinas were damaged because the blood vessels did not develop correctly, and thus became scarred [I am in school mode apparently, I have just used the world “thus”], and I am at increased risk for retinal detachment. Additional theory involves the fact that I was mechanically ventilated/on oxygen, which may have caused damage to my retinas (I think this is a pressure related thing, but don’t quote me on that).  I am currently evaluated by an ophthalmologist specializing in retinopathy on a yearly basis, and get to deal with the fun eye drops and that thing that beeps and measures intraoccular pressure. That is fun.*/sarcasm.  See also: this whole vision issue is very likely a contributor for why I don’t like playing sports involving balls potentially flying at my head or whatever, because I can’t see them half the time [okay, I don’t actually like playing sports in general. Except maybe, you know, hockey with people who are not super intense].  And I have not yet investigated whether it would affect my ability to get a drivers’ license, because I am not exactly interested (or perhaps I’m just not interested in them telling me no).

Regarding my joints, I think this has been the biggest of the remaining issues.  They do not cause me any pain [except the hip with insane overuse].  The joint issues only affect the right side of my body–my right hip, elbow and wrist are affected, but as far as I have realized [and compared with my left side], my ankle is fine.  Interestingly, I did not even notice my wrist was significantly less flexible than my left until a year or two ago [I can’t fully remember, but it may have been while I was studying types of movement for the biomechanics chapter of intro kin last year and doing all the examples while sitting in the public library.  See also: first paragraph].  As for my right hip, I am not sure the technical terms for it, but you know the whole sitting “criss-cross applesauce” bit? Can’t do that. Or certain yoga poses, if we want to make this applicable to my current life that does not involve any more criss cross applesauce.  If I remember correctly, that caused several awkward moments sitting on the floor in class/gym class growing up [“Sit with your legs crossed and hands in your lap.” “I CAN’T!” . . . yes.).  Thanks to the hip, my right leg is also shorter than my left leg, as my hips are not evenly aligned [lost points on my postural assessment during seniors lab last term on THAT, by the way].  As is likely fairly obvious, my left leg is much stronger than my right.  I also seem to have developed some kind of irregular curve in my spine due to this [also causing lost points on my postural assessment, dang it, and also questioning from my pulmonologist whether I had scoliosis.  I have not bothered to follow up on this.]

Prior to 2002, my right leg was 6.5 cm shorter than my left, and “corrected” by the addition of a lift to my right shoe, which was accompanied by kids constantly asking why I was wearing two different shoes [I have to give myself props here, I believe I was fairly patient explaining this 4,000 times to every single new person I met].  Additionally, I still walk with a slight limp (see also: reported by other people).  In 2002 [age 11], I had an operation done on my left knee to remove four growth plates and slow down the growth of my left leg to allow my right to “catch up” while I was finishing growing.  By 2004 [I think], I moved from the outer lift on my shoe to one that is inside my shoe [which now allows me to own multiple pairs of shoes and any shoes I want to pending they, you know, cover my entire foot], and therefore I typically only get the “You’re limping, are you hurt?” question now, and not very frequently.  Currently, the difference between my left and right legs is 2.5 cm.  I was followed by a pediatric orthopedic surgeon and x-rayed incredibly frequently, especially in the planning stages before my surgery, because it had to be timed so exactly to correlate with my growth to avoid the chance of the difference in lengths just switching out.  I believe I was discharged from his care when I was fifteen or so, and it was honestly a bit sentimental as he had followed me my entire life.  I remember him telling me “Well, Kerri, you were a very sick little girl, but you are doing fabulous”, and then freeing me. [He was awesome, by the way, he and my mom were basically on first-name basis and he made frequent-flyer jokes sometimes when I came into clinic, and often came through the back door to x-ray looking for us when I had appointments].

In turn, obviously the joint issues affect my athletic ability.  I run slow [and did so even before the asthma became an issue, although that may have been present longer than recognized], and definitely believe that because these anomalies have probably caused my muscles to adapt a bit differently, I definitely get tired easier [I often wonder how much the differences in range of motion affect the amount of energy required by my muscles in my legs, and in turn how this affects the asthma [can I take this moment, once again, to redirect to the first sentence, please].  I throw [and catch] left handed because that arm is stronger, so baseball is actually hilarious.  I golf and play hockey left handed [and by golf, at this point, I mean mini-golf. Though I keep saying I am going to try golfing, and also because since I joked so often about joining the golf team in high school, maybe I should actually try it. I have clubs, who wants to go?].  As for badminton and tennis, I think I am actually STILL confused which hand I play with.  [Due to all of the above, I am also fairly useless in volleyball as my arms don’t line up].  On a positive note, because my right arm does not straighten fully, when fully extended it is perfectly angled for an upper-block in self-defense type things.

Day to day, I think the biggest way my joint issues affect me is in putting socks on and tying my shoes. Seeing as these are obviously fairly critical activities, I’ve adapted for that.  Think about how you put your shoes on and imagine not being able to put your foot on the side of your opposite knee, and THEN when you think of just bending forward to put your shoes on, remember that one arm does not extend fully . . . and you will kind of understand what I mean . . . it is doubly tough with socks!  [I will fully admit tying shoes can still be tricky considering I am fairly impatient. I think the most frequent phrase my friend Tara said to me in high school was “Your shoe is untied AGAIN”, it got to the point where she just grabbed my leg and retied my shoes daily and finally got me in the habit of double-looping and double-knotting.  Simple things = big difference.]

Currently, my biggest day-to-day challenge is, of course, the asthma.  My care team has mixed feelings on how the prematurity may have affected my lungs, considering I didn’t develop asthma until I was sixteen.  My allergist has thoughts that there may be a correlation, whereas my primary care doctor and former pulmonologist did not. A respiratory therapist/asthma educator I saw a few years back believes that my asthma, or at least the way my lungs behave and PFTs look, is likely related to my prematurity [example: increased reactivity in my small airways].

At this point, the why doesn’t really matter as much as owning it does!  For me, owning it happens through understanding it, treating it, and doing my best at dealing with the stress that may come along with chronic disease effectively [stress = increased airway reactivity = not good!] and keeping my body healthy through regular exercise in spite of the exercise induced asthma, working at the nutrition thing [I’m definitely guilty about things like not eating till noon and sucking at eating the good stuff . . . for a vegetarian, I kind of suck at the vegetables aspect sometimes] and doing my absolute best to avoid picking up any gems [a challenge that involves lots of hand washing when I work with 55~ elementary school aged kids, as well as pre-schoolers, and too many incidents where I’ve seen university students walk out of the bathroom without washing their hands . . . and this guy] which can make my asthma much worse.

I currently take three control inhalers per day–an anti-inflammatory corticosteroid inhaler [Qvar] twice a day, a combination corticosteroid + long acting beta-2 agonist bronchodilator [Symbicort] twice a day, and an anti-cholinergic inhaler [Atrovent, which is another variety of bronchodilator that works differently than the beta-2 agonists].  This is in addition to my blue rescue (short acting beta-2 agonist bronchodilator) inhaler [aka Ventolin] as needed and before and after exercise, and Ventolin via nebulizer when I feel really bad [not too often unless I am sick, fortunately!].  It’s a lot, and that sucks, and it took so long to come to this combination that WORKS, but at this point, I DO feel healthy most of the time, which is something I couldn’t say for at least a year and a half after my diagnosis in 2008.  So whether that is linked to the prematurity, especially now that I have learned I have family history of asthma [my grandma was diagnosed at 75, and her dad had asthma], who knows, but it is the more significant of the things I deal with on a day-to-day basis.

It is a ton better than it was.  I remember all-too-frequent occasions in my first year of university fighting to make it through class, often half hunched over my desk, holding out till we were dismissed to go take my inhaler. I still have the odd class like that, but they are few and far between. (While I am very okay talking about my asthma when I feel fine, I really struggle with letting people see/know when I am not okay. The only times I can remember taking my inhaler in public are all exercise-induced things when I wanted to keep going [during races/that time I crapped out at the gym [I did not keep going that time, I think I freaked my friend out too much]/that time I was riding a half marathon on the stationary bike and I refused to quit before the 13.1 were done. I’d say about 98% of the time I do the inhaler in the bathroom to avoid people staring/freaking out].

Out of all of the above, the asthma is evidently what affects me most in terms of what I blog about and advocate for, because it wasn’t there fromt he get-go, and I’ve had to consciously adapt for it.  In the day-to-day, inhalers, spacers [AeroChambers] and peak flow meters clutter my bathroom [drives my mom crazy]. There’s pretty much a permanent inhaler bump from my Ventolin in my pocket, usually the right one [in case you cared to know].  Often, the other inhalers spread beyond being contained in the bathroom–I keep a Ventolin inhaler by my bed [because there is very little more annoying than having to wander around to find one on the rare occasions my asthma wakes me up at night . . . and not being able to find one is the worst!]–there is usually one in my backpack too, but that one seems to have been transplanted elsewhere [I really need to replace that one before lab starts and my classes move into the gym!]. If I go out for more than a few hours, the Atrovent usually tags along.

In exciting news . . . I am working at scheduling a trip to Pittsburgh in August to be a participant in a research study led by world-renowned pulmonologist Sally Wenzel called the Severe Asthma Research Program.  Though my asthma is tricky, it is not severe–I am wishing to join as a comparative participant and hoping to contribute so that 1) people don’t have to go through what I went through in trying to increase control over my asthma, 2) I can use my silly lungs for good and 3) HOPEFULLY learn some more about my own asthma!  More on that to come . . !

Back to the prematurity bit . . . it’s been one heck of a journey from the note in my NICU record stating “this baby is a sick baby”, to where I’m at now.  And even if it hasn’t been all positive, it definitely helps explain me, and helps me to see things differently . . . Who wants to be part of the norm, anyway?