I solemnly swear that for the next two weeks I will not think about cells, DNA, or anything generally smaller than a peppermint candy.

Holy smokes I’m done!!

This has officially been, hands down, the HEALTHIEST exam season so far. No oral steroids, pneumonia, doctors or anything. I am very proud of myself.

Now, I have to madly pack as I haven’t done anything yet and I have to get up at 4:30 tomorrow! It’s totally worth it though. I can’t even tell you how excited I am to be going home to see my family and friends, and to go SKIING in the Rockies.

SHAMELESS BLOG FOOD THEFT

So Amy gave Kerri some Blog Food, and now I am stealing this Blog Food and writing about it. It’s a good topic, and hopefully it will be helping Amy out (and any others parenting little lungers). The topic in question is:

what you find hardest about taking care of your own lung health, what’s most challenging as a hs student? College? What your parents still help with/what you wish they’d help with more—can you sense my ulterior motive here

I’ll tackle these systematically.

Hardest about taking care of my lung health: deciding which step in my action plan to step to. It’s not that I don’t have a well-defined action plan, or that I haven’t discussed this endlessly with my doctors, it’s just that I have a hard time perceiving whether or not I’m “bad enough” to take a certain action.

In high school the hardest part was: seeming normal and cool. I kid you not. I went to an extremely small high school, where teachers knew everything about you and you knew everything about them. My class (14 kids) was extremely tight. I felt pretty self-conscious that every last person in the school could recognize me by my cough alone, although I dealt with this by laughing it off and letting a joke be made of it. I didn’t like slipping in late to class after my 10th appointment in a row, or explaining why I had been absent for a week. Although it’s not rational, these things WILL bother a teenager. I think it’s important to validate the feeling a little if your kid is struggling with their asthma image.

In university the hardest part is: Getting enough study time when I’m flaring is a big one. I deal with this by allowing for more study time than I need so that I can afford to flare (wow that sounds sad). Like I mentioned above, just learning to perceive how I’m breathing, what I need to do, and then convincing myself to actually do it.

What do my parents still help me with: Well, I don’t live with my parents 8 months out of the year, so they don’t do a whole lot at this point. I know I can always call my mom if I’m worried about my breathing and need to discuss what to do. Usually she’ll just tell me that it’s OK to start pred/go to the clinic/hospital etc and this is just the nudge I need to take action. When I’m at home during breaks, my mom helps me out just by doing supportive things if I’m flaring (from getting me a glass of water, to picking me up from work, to driving me to the ER, you get the idea). Although my dad is a supportive guy and interested in my health, my mom got stuck on asthma duty at some point in time and it’s never changed.

What I wish they’d help me with more: Umm, I wouldn’t mind if they took care of my medication co-pay. Even with my student insurance, asthma meds can add up. Oh, adulthood… Other than that I’m at a point where I’m perfectly happy managing my own health. Not that I like it, but it makes me feel like responsible and I’d probably despise it if I had someone looking over my shoulder.

Another note: I acquired the responsibility of scheduling doctor’s appointments and noticing when I needed refills in about 10th grade. When I learned to drive, I was allowed to go to my “minor” appointments alone. I think this is a perfect time to start doing these things as you’ve still got your parents around as a backup.

Soooo, as another young adult, I think Elisheva should tackle this one next!!

LWTL is one year old today!

Yep, it’s my one year blogoversary! I remember starting this blog last year during exams, I was in much the same position and frame of mind I am in now. I have no idea why I just decided to start it up one day but I’m glad I did. I can’t believe I kept it up for a year, that I was able to write about breathing for a whole year! Thanks to everyone one who reads and to those who faithfully comment and offer advice!

You know one thing I like about asthma blogging? It makes me accountable, and makes me take better care of myself. I stopped doing really dumb stuff that might cause me to have an asthma attack because I think about how embarrassed I’d be to have to say “oh yeah, I just got back from the hospital because I decided to go to my friend’s horse show”. (Ok, I never was so dumb as to go to a horse show, but you get the picture). 

In other news, it’s only six sleeps until home! Two more exams to go, Saturday and Monday. I’m feeling pretty good about these exams but have lots of studying to do yet. It’s verrry snowy here but when the sun shines I take a break to go running. Running in snow is like running on the beach: although the snow is packed down on the sidewalks, I still feel like I’m going at half speed but getting twice the workout!!

Breathing is still VERY good. I think I mentioned that I increased my inhaled corticosteroids so I’m at two puffs of symbicort and two of pulmicort twice a day. It’s really doing the trick, I think. I feel way less twitchy these days. Whenever I up my inhaled steroids, I get a sore throat. After the last time this happened I improved my routine so that I always brush my teeth after I take my puffers and I’m doing a good job of rinsing, but it’s still happening. Any other suggestions to minimize this? Anyway, I’ll take this scratchy throat over unpredictable breathing any day.

Oh yeah, and it’s six sleeps until home!!

Classes = done!

Classes are done for the semester, my last lab report is handed in, now all I have to get through is finals. Piece of cake right? NOT, but I’m sure I’ll be fine with some mad studyness.

Despite my best efforts, I can feel a cold coming on. I can tell because my throat is fuzzy and my cough actually hurts. I’m still breathing pretty good, I bet there’s still time to salvage the situation! A little orange juice, a few pots of tea, a few power naps here and there and I should be golden.

I have a doctor’s appt later today and I’m actually nervous about it. It’s funny because when I am well controlled and have good news to report, I look forward to seeing my doctor(s). When I have to tell them that things aren’t working and that I haven’t been well, I get nervous and I find it really hard. To be honest, I would say that my asthma control has declined in the past 6 weeks or so and that’s what we’ll be discussing today. I promised myself I would be honest and not sugar-coat anything but I’m getting butterflies in my stomach just thinking about it! Bah, I should be over this type of thing by now, I’ve been communicating with doctors for years! Well, wish me luck. I hope my favourite nurse is in the clinic at least.

Oh yes, and it is finally snowing and this makes me happy. I know that snow is a hassle but it warms my heart. <3

Clarifications

Recently, my doctor decided to give me a prednisone stash to use as I see fit. I mentioned that I have exacerbations often enough to require prednisone every 1-2 months (at least during the winter/spring). And although it’s my constant reality, I know that on a computer screen this can seem extremely drastic. Excessive. And I realize, in an effort to make light of my situation and not worry anyone who might be reading, I often talk about taking prednisone in an offhand manner as if it’s no big deal. I feel that this is misleading and I apologize.

While I live an extremely full and wonderful life, the truth of the matter is that my asthma is a bit complicated. It’s not normal to have exacerbations so often, I’m fully aware of this. Most of the time I have trouble identifying any trigger at all for those severe attacks. My pulmonologist and I actually are working to dig a little deeper and I hope to have something to report very soon.

So, with my newfound responsibility of being the one to decide when I need prednisone, I do have limits and don’t use it for any old flare-up. I kind of hesitate to start justifying it but here goes nothing. First, I consider how long the symptoms have persisted. If I’ve been steadily getting worse for 24 hours, I usually take that as a sign. I consider how much relief I’m getting from my ventolin. If I’m barely getting any relief or if I find myself using my inhaler every 20 minutes, then I know it’s time. If I’m thinking about prednisone, it’s because going to the bathroom makes me out of breath, applying mascara requires pursed lip breathing and I have energy for little else than leaning on a table. When my thoughts change and I start to see the emergency room as the place I’d like to be, I take prednisone.

I don’t like taking prednisone, just like any other asthma/IBD/lupus/cancer patient out there. I am well versed in the long term side effects. But it helps me breathe. It quickly gets me back to Danielle, and I can start doing Danielle things again.

I know I’m normally Queen Positive, and this post is a stark contrast to my norm but God it felt good to be honest. Scary, but good.

Danielle’s tried and true tips for working around asthma during exam period

Yikes! I’m headed into my fifth exam period of my university career! I’ve dealt with asthma exacerbations in one form or another at pretty much every exam period so far.  If you are fanatic student like I am, you’re going to want to maximize your time studying, minimize your time spent dealing with your asthma, and NOT miss any exams. Here are some things that have helped me:

1. Study away, but don’t compromise your sleep. The less you sleep, the more susceptible you are to colds and infections, which can create big asthma problems. Sleep is a priority, I mean it.

2. Become a germophobe, especially during this H1N1 outbreak. Avoid your sick friends, wash your hands and use your head. It’s worth it if you can avoid getting sick.

3. Make a study schedule, and arrange it so that you are pretty much prepared for your exam the day before you actually need to be. This way, if you are suddenly flaring the day before your exam, you won’t be in trouble. Less stress for you. I bet it’ll improve your mark too.

4. Know your school’s policy on absenteeism from final examinations. Know what kind of documentation you need if you are to miss an exam.

5. If, 24 hours before your exam you are flaring and are unsure whether or not you’ll be able to write the exam, contact your professor to let them know what the situation is. They appreciate this.

6. Don’t be afraid to step up your meds as per your care plan if you think it’s what you need to get you through.

7. Be aware of potential triggers in the exam hall. For example, every year I seem to have at least one exam scheduled on the rink of the hockey arena. Arenas really set me off due to a mix of cold temperature and fumes from the zamboni. Therefore, I pre-medicate for these exams. Another thing to look out for might be a really old or dusty building.

8. If you think you’ll need it, and even if you don’t, have your ventolin out on your desk. In most cases, you’re not allowed to do so much as reach into your pocket during an exam so have it in plain sight. If a proctor gives you a hard time, be firm and tell him/her that it’s absolutely necessary (I’ve only ever gotten one comment about this).

Does this make me sound neurotic?? If it does, it’s only because I really care about school and because I’ve run into a lot of problems in the past. I know a lot of you are students so tell me: how do you deal with the asthma beast during exam period?

EDIT: I just checked my exam schedule and I have no exams scheduled in the hockey arena. Score!!

Feeling much better

24 hours after starting the prednisone, I feel like me again. I went for an easy 3 km run this morning. Some people might say that is a ridiculous thing to do, but don’t worry I did use my brain. I rolled over in bed this morning, and didn’t feel any pain, and instead of taking in a half a breath before coughing my brains out, a nice full breath just glided into my lungs. Now THAT’S improvement!! I couldn’t believe it, so I jumped outta bed, took my puffers, had some water, got dressed and went. I took it easy and I was fine. It felt so good to be outside and active! I’ll be back to my regular distance/intensity in no time!

Now I am chowing down one of my favourite breakfasts : oatmeal with cinnamon and raisins with milky Earl Grey tea on the side. yummmm

I have THREE good reasons to get and stay healthy for next week: I have a midterm on Monday, I have an appointment for my H1N1 vaccine next Tuesday, and I am giving blood on Friday. Yes, yes I know I’m fairly certain I already had swine flu back in June and that I’m probably immune to it (especially since my rockin’ immune system fended it off when my roommate had it) but really you can never be too safe!

I’m so happy to be feeling better and that I didn’t spend all that much time in the crappy zone. I must say (though pride is supposedly a sin) that I think I handled this flare-up pretty well. I didn’t waste any time in doing what I needed to do and as a result I’m already better. Oh, and what did my mom say when I called her? “OK, well good luck with the asteroids sweetie”.  

 

On prednisone and my treatment plan

I’ve been bouncing around the respiratory clinic for the past week, conferring with my pulmonologist and getting  full PFTs and simple bloods done. I also checked in with my gp this week. And the concensus is: it would be best for my asthma control if I had full control of my prednisone usage. In other words, I get a nice fat supply of steroids and decide when I need them.

Woah. This is different. In the past, I have had one course on hand to use in a pinch, like if I was travelling or something. The conditions are that I have to see my pulmo regularly (which I already do) and tell him exactly how I’m adjusting my treatment. The plan here is to sidestep the germy walk-in clinic and hopefully avoid emerg altogether. In case you didn’t know: I’m NOT on prednisone longterm, but I have an exacerbation every 1-2 months that requires treatment with oral steroids. For the past couple years I have averaged 9-10 courses a year. When I say it like that, it sounds shocking. This is TOO MUCH PREDNISONE and I wish it wasn’t like this but the flares come and avoiding taking it only lands me in the ER. That is not where I like to be.

I am kind of wary, will I know how to use it appropriately? Am I a responsible enough patient to be given full control? My pulmo says yes but I have my doubts. True, I know a lot about asthma and I certainly am used to how my own asthma presents itself. I was teaching the med student in the clinic a thing or 2 today. Poor guy was only second year and was sooo confused about asthma meds.

Here’s hoping I just stay well and won’t have to make too many executive decisions.

My personal perception of my asthma at this point in time

It is really difficult to define and describe both the notions of asthma control and severity. I think it’s difficult for patients to articulate what their level of control is, and it’s also difficult for physicians to assess it in their office. In addition, people can be bothered to varying degrees by the symptoms they are experiencing. A new asthmatic will (appropriately) be distressed by mild bronchospasm whereas the most seasoned asthmatics can carry on with severe breathlessness.

There are several guidelines out there which aim to define asthma control in an objective way. Some measure by how many times a bronchodilator is used in a week, or how many ventolin puffers are used per year. Other measures include days of missed school/work, frequency of unscheduled doctor visits/ ER visits, etc. There are all good things to assess, but no one criterion will give the whole picture. Asthmatics are just too darned variable!

I think that most asthmatics have skewed perceptions of how they are doing. We see ourselves as less sick or more in control than we actually are. That’s human nature and that’s how it goes for most things, not just illness. As bad as the bad times are, they can be forgotten when considering the big picture. I’m trying to take an honest look at how my asthma has been recently, just for kicks.

When I saw my doctor last week, I said that things were good, that’s what I would say if I saw him today. When he was asking me his questions, I could tell that he was less than satisfied with my answers.

Despite feeling good overall, I still need my ventolin every day. On some days, I will need it frequently, and if I’m running, you can bet I’ll be using it a lot. Do I wake up at night with asthma symptoms? Yes, especially if I’ve exercised that day, but that doesn’t mean I’m having a “bad night” every night. And YES, my asthma did get out of control last week, to the point where my inhaled medications were not helping and I had to resort to prednisone. BUT the point is that I took the pred early-on-ish and I had my asthma back in control within 2 days (this is a good thing).

I’m not a short-sighted-silly, and I’m not stuck in denial. I know, when I think hard on it, that these are not signs of mild asthma, nor signs of asthma which is particularly well-controlled. I know that your average family doctor wouldn’t be too pleased when presented with the above. But the thing is, I feel like my asthma is good right now, I really do. I’m living a really normal life, doing everything I want to do, and I AM RUNNING. So I’m not fussed about it, I’m in control.

This brings me to my next point: the runnning. I feel great when I run, the adrenaline I get from it is beyond compare and my body is thanking me a thousand times over. But I still get tight, I still cough and I go through a lot of ventolin. As I said above, it also makes my nighttime symptoms a bit worse. The gist I get from people is that they assume that now that I can run, I must not have asthma symptoms any more. I have told a few people that I do in fact feel my asthma get worse in the hours after a run, and their response seems to be then why the heck do it???

Cause I can. Plain and simple. I told myself I could do it, tried it, and realized that I can do it. I seem to have asthma symptoms whether or not I’m physically active, so I might as well take the route that is actually good for my body.

So, all these convoluted ramblings to say that my personal perception of my asthma at this point in time is that it is actually quite good. Also, I love to run.