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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.
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”.
Prednisone it is, then. I know that’s the right decision, I realize that if I don’t then my day will be ending in the ER or curled up on the floor of my room. Not to sound all scary and morbid, but that is the current reality. As long as the pred does its job, then I will be good as new very soon 
If it doesn’t, I’ll take care of that too. And as soon as it’s a reasonable hour back home, I will call my mom to update her. See what a star I’m being?
Which leads me to my next thing, I CAN’T BELIEVE I DIDN’T TELL YOU THIS BEFORE! So you know how every family has its lingo, its “isms”? Yes, well my family has many many many of those. For example, cross-country skiing will forever be “cross-crunchy skiing”, no idea why. Well to my mom, prednisone = steroids = asteroids. Yes, that’s right, my mom has been known to refer to steroids as asteroids.
As in: “Honey, are you being all huffy with me because of the asteroids, or is there actually something bothering you?”
And to me that would sound perfectly normal. Oooooh geez.
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.
Well I asked y’all for some blog food (Kerri’s way of saying please give me something to blog about!). She suggested I write specifically on living away from home with asthma. Well it’s something I write about most days in one way or another. I’ve also written a guest post about it at The Asthma Mom, which you can read here. Still, I’ll share some thoughts about it, as I guess I’m becoming the unofficial expert on the subject! Haha just kidding, sort of.
From day to day, I don’t find it too challenging. I’ve outgrown reminders to take my daily meds anyway. There are a few added responsibilities like picking up my prescriptions and getting my own butt to the doctor’s office. All these little things are like brushing my teeth to me, in other words I don’t think twice about them.
There are times when it’s really, really tough. The hardest part of being so far from home is when I feel like I’m approaching That Critical Point. If you’re an asthmatic, you’ll be all too familiar with what I’m referring to: it’s the point when you’ve been severely short of breath for several hours and all of a sudden your chest gets even tighter. A sense of impending doom washes over you and you think you need a little help breathing, but you are just dreading the inevitable cafuffle caused by going to the ER. I always have good intentions, I try to be a star asthmatic, but my reasoning always seems to go out the window in my desperation to have this quietly go away. It’s when I’m reaching this point that I want my mother and I want her now.
It is an unspoken rule between my mom and I that I call her, if I am able, when I get to this point. I tell her I have been feeling very bad for x number of hours and she asks what I think I need to do, do I need the hospital? (I never specifically call her about my breathing unless I’m really feeling nervous about it). I usually waffle around about it, saying maybe, I don’t know, maybe I should, I don’t want to, I don’t know. More often than not, she’ll calmly tell me that it’s OK to go in and that I should just go. The motherly shove is all I need. Or, conversely, sometimes we’ll agree that I’ll try prednisone or see my family doctor first. As you can see, I may be a semi-independent, reasonably intelligent young adult, but I still need my mother to be my brain when I am having an asthma attack. I wish more than anything that I could have her next to me every time I’m feeling like this, but we make do over the phone.
The other side of this is that I know my mom worries about me alot, which is entirely reasonable I’ll admit. It can’t be easy at all to know your child is thousands of miles away, having trouble BREATHING, and may or may not be fully emplying her logic capacities. Amy, do you wish to chime in here? I know she doesn’t like getting those phone calls, but I can tell she really appreciates that I call her to check in before I go to the ER. I think she likes to be able help me brainstorm about what to do.
The second-hardest part of living away from home is the flip side of what I mentioned above: recovering from severe exacerbations. If you don’t have asthma, you probably don’t know that it can take weeks to return to your normal state (whatever the heck that is). Following a severe episode, especially if it has involved a hospital, I have very little energy and even little tasks continue to make me short of breath. At home, my family (I know I’m always talking about my mom but my dad and brother and sister also exist and are wonderful!) are really conscious of this, they don’t expect too much and help me out with the little things, like um, making me breakfast or carrying my bag or what have you. When I’m away in this situation and trying to get back into the swing of things and keep up with the rest of the world, it’s very tough. I just feel so tired helpless and I yearn for the help and understanding my family provides. This type of exhaustion would definitely be enough to make me cry.
I’ve read and re-read this post a couple of times now, and it kind of strikes me how unprepared I sound in it. Am I actually doing this right now?? I don’t sound ready to be taking care of myself whatsoever! Yet, here I am, thousands of miles away from my family just kind of rolling with the asthma attacks as they come (I wish they didn’t). I deal with each one differently, some more responsibly than others. In one week I turn 20 years old, am I taking care of myself like a 20-year-old should? Have I missed some sort of boat on the matter?
