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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!!
My morning and evening med routine isn’t all that rigourous. Two different puffers (sometimes three), one pill, and I’m golden. Four puffs and a swallow. Sometimes that simple action can really emphasize how the days are cycling round, I think about time, and how I don’t even remember what I did, but I find myself at my desk again, puffing and swallowing. And again, and again. That repetitiveness, that constant part of my day, makes time go faster. Sometimes, while puffing and swallowing, I get the feeling that I’ve been here a thousand times before, that I’ve let another day go by without doing something important to me, and I notice how the days pile up and the seasons change. I think about how I should make my day about more than gravitating from bed to meds to (daily business) to meds to bed. Of course, my days are about much more than that, but sitting at my desk taking my meds, I can get caught up in a bit of a world.
I wonder, will I be going through the same motions when I am an old woman? What about me will have changed?
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.
Things have gone pear-shaped again, despite the 50 mg pred. I felt great after my run yesterday but started to get really out of breath while doing my grocery shopping, of all things. It got worse as the evening progressed and last night was pretty miserable to tell you the truth. This morning is somewhat better but I’m still short of breath. I added 10 mg to my prednisone dose today, hoping that will do the trick. Tomorrow I will call my doc because I admit this is a bit of a pickle I’m in.
I don’t want to think about whether it was wise to run yesterday, it just is what it is.
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.
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.
I picked up my race t-shirt and bib!! The race is tomorrow and I’m really excited.
Hélène is my grandmother, by the way. She died of breast cancer when my dad was 18, at age 51. When I picked up my race pack, I looked at the t-shirt and bibs and had an unexpected wave of weepiness (maybe prednisone induced, I’ll get to this in a sec). Leading up to this run, I was thinking of it as a run, as a way to assess how I’m coming along with my running and how my lungs are holding up to it. Then I realized that this is a community event too, actually a damned big national community event, and that we’re all running for one reason. So many people have been touched by breast cancer, and everybody’s running for someone.
And while I hesitate to call the loss of my grandmother *my* loss, since I never met her, it kills me to think that if she had gotten sick 20 years later, she may have been a survivor. Then, my dad would have had his mother through his young adulthood, my grandpa probably wouldn’t have gotten so f-ing messed up, and I would have had the chance at a relationship with a very special (so I’m told) woman. So now that I am holding my “hope” t-shirt in my hands, I’m finding it a little overwhelming. I know that tomorrow, with everybody in their goofy pink race attire, will be even more overwhelming, but I’m sure that it will be in a good way.
Kerri is doing the Run for the Cure too, in her own city. Go Kerri! Steve of BreathinStephen is doing a half marathon in San Jose tomorrow. You rock Steve! I can’t wait to hear about how your guys’ day goes.
OK, so now on to my health, which has taken a turn for the worse in the past 24 hours. I got worse and worse from about 2:30 on yesterday afternoon, peaking at about 10 PM. I had a very hard time sleeping but fortunately I was able to sleep in some this morning. I was having trouble functioning this morning and feeling really really tight, so I cracked open a bottle of prednisone. I’m obviously in a hurry to feel better so I didn’t hesitate too much with it; I could hardly walk to the bathroom when I woke up. I told myself if there was no improvement by mid-morning I would go to urgent care and get some nebs into me. But I’ve been feeling much less tight for the past hour or so. I ran this plan by my friend XE, which helped tremendously. Thanks girl!
I’m still planning to do the run, as long as I feel well enough to run in the morning. If not, I’ll walk it. If I feel really bad, I’ll skip it and probably go to the doctor seeing as it will be 24 after starting pred. BUT, I’m still planning on running!!! I’m just really trying to get those lungs open today so that tomorrow will be fantabulous. Wish me luck! I AM being smart so please don’t worry.
Kerri’s blog has got quite the discussion going, under the comments section of her latest post. The topic? Prednisone, and home nebulizers, and differences in practices between countries. If you’ve got experiences to share, do join in!
Hi everyone, I’m here to tell you that the asthma drug Singulair was developed my Merck Frosst in none other than the Canadian city of Montreal! I thought you’d all like to know this piece of trivia. Also, the mont in Montelukast, the drug’s generic name, is a little homage to the city. How about that?
There’s actually a large billboard outside the Merck building in Montreal underlining this fact.
I’ve heard people with chronic health issues say things like “I hate my disease, but given the chance, I don’t know if I’d get rid of it”. So, OK, I get where you’re coming from. I know that hardships help you grow, and make you appreciate life so much more. And I know that living with something like that for a long time can start to define you and become a part of your personality. Yes, yes and yes.
My take on the hypothetical “if you could take it all away…” situation is that my asthma is not the end of the world and I certainly can cope but if my fairy godmother came along, I would say YES! I’m thinking of all the possibilities here. I could get a good night’s sleep every night, I could wake up and feel like an actual human being in the mornings, I could dance and run without having an excuse not to, I wouldn’t have to take (and pay for) so many meds, I could go anywhere without having to run the list of potential triggers through my head. And most of all, there would be none of this life-threatening asthma episode stuff, no more scaring myself and everyone around me. Doesn’t all that seem like a good enough reason?
Of course, I can also appreciate the parts of having asthma that have been good for me. Number 1 is that if I hadn’t known what it’s like, I would never have learned to appreciate being able to run like the wind. Now, when I’m healthy, I’m extra-happy, and my smile shows it. I try to remember everything else about my health that is good, like having full mobility, no muscle or joint pain, no stomach issues, no headaches or neuro problems. Hey, I’m a healthy girl.
The other thing that’s been good, and which I really do appreciate is that I have a pretty good angle on what it’s like to be a patient and that will help me very much in my career. I’ve met a lot of doctors and I know which ones are able to communicate effectively and compassionately and I’m starting to model myself after these people.
So yes, every cloud has a silver lining! But I could still really do without the asthma attacks.
My 2 cents for the day, a little peek into my crazy brain. I’m away for the weekend, have a good one!
