Thursday, October 9, 2014

The Pharmacy Dilemma

Hello! Yes, I know, I've been AWOL. All the usual excuses, etc. 

Anyway, there have been some changes to the way things are run at PMH pharmacy. I found this out recently when I went in to pick up some tobramycin for Victor. He'd had a cough and we decided to start him on a two-week course of nebs (totally cleared up now). The first change is that PMH staff cannot drop the scripts into the pharmacy for you any more...so I had to arrive at PMH, pick up the script from Respiratory, then head upstairs, drop it into pharmacy, and then hang around for ninety minutes while it was filled. Naturally, this caused some annoyance. 

Then when we went back on Thursday for our usual clinic appointment, I learned something amazing. Scripts no longer have to be filled by PMH pharmacy. That's right, I can take the script anywhere, to any pharmacy, to be filled.

What this means is that I no longer have to hang around for three hours, waiting for meds every few months. I can drop the script into my local pharmacy and have it filled there in just a few minutes. This is game changing! This is totally amazing!

But wait! Don't you know that if something sounds too good to be true, it usually is? Yeah, now for the bad news.

The problem with picking up CF meds from a regular pharmacy is that they don't generally have these types of meds in stock. I called our local pharmacy and asked whether they could get any Creon in for us. They said they could, and it would take about 24 hours to arrive. That sounded perfect to me.

However, when I went to pick up the Creon, they only had five bottles in stock...not twelve. They said the rest should arrive the next day. So I paid for the lot and took the five they had home with me.

The next day they called me and said that their supplier was actually out of stock.

Basically, this has turned from a three hour wait to an entire week of waiting, and just for one medicine.

I guess this is the reality of living with a 'rare' disease. Your local pharmacy pumps out thousands of boxes of antibiotics, contraceptive pills, antidepressants, heart meds, and various other remedies with speed and precision, every day. But we are living outside the norm. Most people don't even know what Creon is, let alone order it on a regular basis. 

I'd really like to establish a good relationship with a local pharmacy: pharmacists who know us, know the family, and understand our (apparently unique) medical needs. I could rely on them to have our meds in stock each time (and really, I don't think that's too much to ask: we order the same thing, more or less, every three months, barring the occasional order of tobramycin). Is this feasible, or am I reverting to some small-town dream?

Another factor which may be worth taking into consideration is that with the load taken off PMH pharmacy, perhaps the wait times won't be as long there? Ok, don't laugh. I think we all know that's just never going to happen.

So which is it: 3 hour wait after clinic, or the ambiguity of not knowing when/if the meds will be coming in closer to home? 

Hopefully we'll be hearing from them soon! 

Monday, May 12, 2014

I Was Featured on BlogHer

Did I tell you? A post I wrote, Mind Your Words, was chosen to be featured on BlogHer. The title was changed and a picture added, which is fine by me, because I can't think of titles to save my life. That's why all the titles I come up with are crap. I really struggle with it. Anyway, you can imagine how excited I was! VERY. I skipped around the house and was totally unable to do anything else for the rest of the night. I just bounced around and kept asking Phil, 'are you impressed? Isn't this amazing?' He agreed that yes, super impressive, yes, so amazing, now please calm down. I did not.

Eventually the comments came rolling in. Yes! People are actually reading things I wrote AND responding to it! Then I read the comments. Whaa...?

Ok, so, not everyone is going to like the things I write. I'm totally fine with that. I did feel that a lot of the comments missed the point of my post completely, but whatever. Some people got really angry with me. One person instructed me to run my computer over with my car. Don't think I'll be taking that advice. I mean, my computer is pretty clunky and slow, but how else am I going to unintentionally rile up complete strangers?

Still, I learned from the experience. I think it was probably posted in the wrong 'section'. It was posted under the Blogging/Social Media section, and I can see why that may have fit, but I think it would have been better received if it had been posted in the Family/Special Needs section. I think that the post really had less to do with how people conduct themselves over social media, and more about being sensitive to special needs families and considering your audience.

I also realised that most of the readers (all of the readers?) had not read my blog and did not know anything about me or my family. So the post probably came across as sounding quite weird. I also had commenters ask if I had a sick/special needs/disabled child. I think if I'd made it clear that I am the parent of a child with a chronic illness, it might have added a bit of context. I had originally written the post for this blog, and people who read my blog know about us. If they're new readers, I've made it simple to find out our background (Start Here). But when the post made its way to another platform, that context didn't follow along with it.

Ironic that a post I wrote about being careful what we say and who we are saying it to taught me the same lessons that I'd been trying to describe.

Of course, the comments weren't all negative. There were a lot of positive comments in there too, people who understood what I was trying to say and who could relate for a variety of reasons.

I welcome all feedback on my writing. The negative comments could have been a little more constructive, but it helped me understand my audience and improve my writing. And you know what? I have another post being featured this Wednesday!

Overall, though, I just hope that I can make a connection to others through my writing. Because that's really what blogging is about: community.

Wednesday, April 30, 2014

A Cystic Fibrosis Picture Challenge

Since May is Cystic Fibrosis Awareness Month, culminating with 65 Roses Day on the 31st, I decided to create a Picture a Day Challenge to raise awareness for CF!



I have posted this on Instagram, which is where I'll be posting my daily photos. The object is to take and post one picture every day, using the prompts, to illustrate a life with CF.

But I was careful to not only focus on the medical side of things. I want every person with CF to be shown as more than just 'someone with CF'. I tried to include prompts that people can use to show their lives outside of CF as well.

I hope this challenge will raise awareness of cystic fibrosis in a fun and interactive way. And I really hope that you join in! Feel free to share the challenge and let's give a peek into the world of CF!

Monday, April 21, 2014

Why I Quit Facebook

I've been meaning to write this post for a while, but my attempt to live intentionally and move away from the computer has worked a little too well, and I haven't sat down here to write for a long time now. Perhaps I'm compensating for too much time sucked away by this machine.

What do I mean by living intentionally? I'm not really sure. I don't think I could give an adequate definition right now. Maybe I'll need to write about it a bit more later on.

Anyway, as you can gather from the title, I quit Facebook.

The reasons are straightforward. And while there are a lot of reasons that I could explain, I just want to focus on the most important ones.



It was taking up too much of my time.
I'd sit down at my computer to look something up or to study, and I'd have Facebook open in another tab. Before I knew it, I'd spent 45 minutes on Facebook and zero time studying. I tried to cut down on my time on there, but it was useless. Just having it there was too much of a temptation for me when I had to spend time at the computer anyway. Having it on my phone was too much of a temptation for me the rest of the time. I'd wake up in the morning and check my notifications that had accumulated overnight, and by the time that was done, I'd wasted a good half hour of my morning.

It was taking up too much of my emotional energy.
I made a big effort to only have Facebook friends that were actually my friends. I would periodically clear my friends list, removing people whom I didn't want to interact with any more (or hadn't interacted with), and I carefully considered before adding any new friends to my list. Even with these precautions, I had over 100 people constantly updating their various actions every day for me to read. Over time, it became very overwhelming to me to take an active interest in the various happenings of over 100 people. That's not to say I don't care; I do care, and that's probably part of the problem. It was even more emotionally taxing to interact with strangers and to unwittingly become tangled in arguments, disagreements or even just lengthy conversations with friends-of-friends. I'm saying this as an extrovert, so I can only imagine how draining this must be for the introverted type.

It's not a genuine social interaction.
I realised that I had a need to connect with people authentically. And at the same time, I understood that everything written on Facebook is part of a facade. It's also a very lazy way of communicating, and I wanted to live in real life with other people. Whether that meant actually meeting up physically or writing emails, I wanted genuine social interaction and an authentic connection.

It wasn't making me happy.
This is probably the most important point. I was no longer gaining any happiness from Facebook, and in fact, I mainly just felt stressed from it. Waking up in the morning and seeing multiple notifications filled me with a feeling of dread. I didn't want this sense of obligation and responsibility of responding to messages and finding the time to read through all the notifications. At the same time, I could hardly look away. I felt as though I was tied to a treadmill that I didn't want to be on.

I was a very active user of Facebook and my numerous attempts to cut down on my time spent on there were ultimately futile. I understood that I was really no longer in control of the situation and that my Facebook habit was taking me away from my real life and from things that I actually wanted to do. Is it possible to be addicted to a social networking site? I'd say yes, given that I couldn't seem to limit my time spent on there on my own. It was too much of a distraction, it furthered my procrastination.

I'd actually been thinking about leaving Facebook for a very long time. It definitely has its place in society and I don't think leaving totally is the right choice for everyone. It was a lifeline for me when I lived overseas, as it enabled me to stay in contact with friends and family no matter which continent we were on at the time. And for a long time, faraway friends and family were the main reason why I didn't quit. It made it so easy to stay in contact with them. But, eventually my other reasons won out. I decided that I'd let everyone know my contact details so they could remain in contact with me if they wanted to. Are people really likely to send emails in the age of Facebook? Yes, actually, people do. If people want to remain in contact with me they will put in the effort and I will reciprocate.

And what is life like without Facebook? Freeing. Wonderful. Like I've reclaimed something I'd lost. Once Facebook was gone from my life altogether, I felt happy and calm. I was back in control of my life and could live in the present. I did feel a bit sad at first too. Six years of my life have been documented on the site, and I did have some great memories attached to it as well. But I knew the decision was for my own good and after a day or so of wondering what was happening on Facebook without me, I realised that nothing was happening there. Instead, I've filled my time with reading (I have read three novels since quitting two weeks ago), I have found the time to sew some projects I've been putting off for a year (seriously, a year). I've actually gone out and seen my friends. I have a better morning routine and it's easier for me to go to bed at a reasonable hour instead of sitting up, entangled in an online conversation.

I think that leaving the world of Facebook behind was a good step in the direction I want my life to go in, and I think it's something for other people to seriously consider if they feel the same.

Monday, April 14, 2014

Bronchoscopy, CT Scan and Annual Review 2014

The past two weeks have been insanely busy for us, as it's that time of year when Victor has his bronchoscopy, CT scan and annual review.

Our time started last Tuesday with a lung function test. He was given a sedative so he was asleep for the procedure, which went very quickly. He took advantage of the situation and had a decent nap afterwards!



On Friday it was time for us to head into PMH early for Victor's bronchcoscopy. We managed to be first on the list, which was great. Everything went really well and his airways looked great.

The next Thursday was our Annual Review, where we received all the results and had a more in-depth consult with the entire CF team. Basically, things are great. There were no bugs in his lungs at all and the CT scan looked wonderful. Just what we wanted to hear!

The doctor did find a little bit of pseudomonas in his throat, but it was confirmed that the bug was not in his lungs so we're in the clear. Of course, if his health changes at all, we'll be right back there to figure out the best course of action.

Aside from that, Victor is growing well and everything else seems to be on track!


Monday, March 24, 2014

Mind Your Words

I'm still here! After posting every day for a month, I needed to take a break. It ended up being a longer break than I intended and it's been nearly a whole month since I last posted!

We've been busy with life: school, playgroup, dodging library fines, and I'm back at uni.

However, there's been something weighing on my mind that's been sitting there for a while. It has to do with people spouting well-meaning platitudes that unfortunately come across as being condescending, hurtful, ignorant or even just cruel.

A few weeks ago a friend posted something on facebook along the lines of 'all that really matters is that the people you love are happy and healthy. Everything else is just sprinkles on the sundae.' Now, aside from the fact that this little saying is quite revoltingly saccharine (not sure how anyone could honestly say that with sincerity), what is it really saying about people?

At first glance, this cutesy little clump of words tells us what to truly value in life. It could be interpreted as saying that all our superficial worries are meaningless, because health and happiness are what's truly important. Now, on that point, I can agree. Society is wrapped up in meaningless little squabbles and places value in all the wrong things. But look again at how this is worded. It is essentially saying that happiness and health are the most important things in life. Well, are they?

While I think most people would agree that striving to live a healthy life is important, the fact is that not everyone can achieve the gold standard of 'health' that this little saying seems to be talking about. It seems to ostracize those with chronic or incurable illnesses. What do they get? No sprinkles on the sundae and maybe not even a sundae to begin with?

If this friend had simply posted about how happy she is that her family is happy and healthy, I would agree. I am happy for everyone who manages to attain this, whether through hard work or dumb luck. But the wording of the platitude makes it about other people. And you know what, it's actually not ok to make blanket statements that refer to other people. About anything. Even if you are a dead celebrity (because it's not my friend's original quote).

I get that this was well-meaning, but at the same time, it really stung when I read it. I couldn't help but feel bitter about it. You have your health? Well aren't you just fabulous.

It's almost as bad as the throwaway line that gets spouted by millions of smug, unthinking pregnant women. "I don't mind if it's a boy or a girl, as long as it's healthy."

Sorry, what? As long as it's healthy? And what if it's not? You'll send it right back to the baby store? I heard the stork doesn't have a good return policy.

Obviously everyone wants their baby to be healthy. You don't have to say it, we already know. We also like to assume that people love their children whether they are born practically perfect in every way or with some additional challenges to face. This little saying, though, makes me wonder. Think about it: we'll love a boy or a girl, as long as it's healthy. What's the unspoken part that comes after that? And if it's not, well...

Luckily, there's a very simple solution. Think about the words coming out of your mouth. If you can't think of anything to say aside from parroting a tired, patronizing line, then maybe it's best to not say anything at all.

Try this one instead: "I don't mind having a boy or a girl. I hope our baby is happy."
Or this: "I hope our baby is healthy, but if not, we'll still consider ourselves lucky to have them."

We have to take care of each other in life. It's no use spouting little sayings about the important things in life if they are not said with kindness and empathy. After all, no one knows what the future holds.

Friday, February 28, 2014

The Meaning Behind "Frozen"

The boys have been obsessed with Disney's new movie Frozen. For those of you who haven't seen this movie, you might want to stop reading now because this contains spoilers.

Art copyright believed to belong to Walt Disney Pictures. Origin

The story is basically about a princess, Elsa, who can magically create ice and snow, but after an accident she is forced to hide this ability away until she can control it. Her childhood motto, "conceal it, don't feel it, don't let it show" underpins her entire existence. She even hides from her younger sister, Anna, creating distance between them.

Eventually, Elsa's secret is revealed in a dramatic and negative way. She then runs away to live her life in freedom, in the snow-covered mountains. Anna goes after her, looking for a way to get rid of Elsa's magic ice that is now covering the town, and searching for a way to connect with her sister.

The ending, and moral of the story, is that love can melt a frozen heart. Anna needed an act of true love to fix her heart, frozen after being accidentally struck by magical ice, and she believed that she needed true love's kiss. But it was actually the love of her sister, Elsa, who broke the spell and restored their town to its correct season.

When I first saw this movie, I thought it was cute, although a little bit cheesy. But I guess all Disney movies do need that bit of saccharine, and showing the power of love in all its forms is a great message to send young viewers.

As I watched it more and more (and more....I told you, the boys love this movie), it finally dawned on me that Elsa's powers were actually metaphorical, and there were far deeper meanings present in the story than I had noticed at first. Yeah, I'm the best English student in the world. Only took me how long to work this out?!

I think there can be a few specific interpretations for Elsa's powers. One that seems to fit is that Elsa is gay. It's mentioned in the film that she is born with these powers. She is different, and she is instructed to hide her difference away by trying to repress it. I know that's a message that a lot of gay people receive. This never worked well for her, and eventually she ran away where she could be free to be herself. Subsequently, she was a lot happier for it, and created a magnificent ice palace (and somehow made a dress out of...ice?). When she finally accepted herself for who she is, she was finally able to control the powers that had ruled her for her entire life.

However, my first guess was that Elsa had a problem that could be seen negatively, but if she learned to work with it and accept it, could work to her advantage. I was thinking along the lines of autism, which society often labels a disability, but if it's viewed as just a different way of thinking rather than a disadvantage, can actually be more like a gift. Rather than trying to force people into perfect boxes, we need to learn to accept people as they are.

This interpretation can work with anything, really. Elsa is everyone's princess. She represents everyone who ever felt different, everyone who never fit in. She's the one who was told to conceal it, don't feel it, don't let it show. She's the one who tried so hard to "be the good girl you always have to be". The metaphor actually works better in a more general way. It's open so that people can freely make their own interpretation and relate to Elsa on a very personal level.

Elsa shows that being yourself is the best way to live. She learns to control and work with her power, bringing beauty and joy to everyone around her.

But, we can't forget another very important character: her sister, Anna. I think it's really important to notice that Anna always accepted and loved her sister. She never shunned her. She was never afraid of her. When Elsa physically hid from Anna, Anna never gave up trying to connect with her sister. When Elsa's powers were revealed, Anna wanted to help her sister. When Elsa ran away, Anna ran right after her. Elsa was so convinced that she had to hide away from people that she even hid away from the one person who loved her unconditionally.

Frozen is far from a simple cartoon for kids. It can teach us many things about love and acceptance. Acceptance of others, and acceptance of ourselves. And I love the Trolls: how many nuggets of wisdom do they come out with, and they're completely adorable! What a wonderful modern fairytale for today's children: catchy songs, stunning visuals and beautiful messages for them to internalize, making this film an instant classic.
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