“I dunno”

I used to say “I dunno” a lot as a kid. It was my placeholder. Depending on the situation, it usually meant one of two things: “I genuinely don’t know the answer to that question,” or “I do know the answer, but I don’t know how to phrase it.”

I got into the habit of “I dunno” to questions because other people – adults especially – wouldn’t give me time to construct my thoughts. They figured that if I could blast out entire monologs about weather, I should be able to answer any question instantaneously and intelligibly.

The issue was, for me then and now, it’s a situation of “Fast, coherent, and full – pick any two.” I can answer quickly and coherently if you want an incomplete answer. I can answer quickly and fully if you don’t mind what I’m saying coming out so garbled you can’t make heads or tails of it. But if you want a coherent, full answer to your question, be prepared to wait a while so that I can sculpt the words into what they need to be.

Adults didn’t get this, and they’d get angry if I took too long to answer. So I started saying, “I dunno.” This would also frustrate my parents, especially if it was a preference question or a question I definitely did know the answer to. “What do you mean you don’t know?” or “Yes, you do!”

It would frustrate me, too, because a lot of the time, my parents would take it at face value and then work of the assumption that I didn’t know. “I know that.” “You just said you didn’t!”

One of my teachers growing up had it figured out, though. She’d hear me say, “I dunno” and wait a beat or two. If I moved the conversation on, she knew I genuinely didn’t know, and if I answered fully a few seconds later, she knew I just needed time to process. It worked really well.

So, I’d say, if you’re dealing with a kid whose default answer seems to be “I dunno,” try giving the kid a bit of time to sort out their thoughts before you move on. You might be surprised by how they answer.

Astham Education Series: Asthma equipment. Part 1: Med delivery systems

As I hinted in my last post in the series, this is going to be a post about all the different gadgets an asthmatic might have. The post will include links and descriptions, but as I have none of the rights to images, I won’t be using them directly here. Instead I’ll link to an article or image of one somewhere else and direct traffic to the person who created the image.

There are a few major categories that I’ll separate everything into just to keep stuff organized and a bit easier to follow: There are medication delivery systems – nebulizers, spacers, metered dose inhalers, dry powder inhalers, and the like. There are at home testing supplies – peak flow meter, pulmonary function testers, and pulse oximeters. There are accessories – specialized ways of carrying around your meds and equipment. Lastly, there are bookkeeping tools for keeping a symptom log – I’ll explore both hardcopy and software options.

This post, for the purpose of length, is going to be split into 3 parts: Medication delivery systems, at-home testing supplies, and accessories and bookkeeping supplies. This is the first part: Medication delivery systems.

What I call a medication delivery system is just a tool that lets you get your meds where they need to be. For people with injected drugs, this would be needles and syringes and suchlike. For asthmatics, they tend to be things that help you inhale stuff into your lungs (although some asthmatics, mostly extremely severe asthmatics, do use auto-injectors and injection pumps, so I’ll include those in this post, too).

The most recognizable medication delivery system is the metered dose inhaler (MDI). MDIs are a way of turning asthma medicine into a mist of fine particles small enough to get into your lungs. A good description of how they work can be found here. In short, the canister contains a mixture of propellant (a liquified, nontoxic and chemically inert gas), medicine, and one or more stabilizers.* The canister is connected to a valve which can only dispense a certain amount of the mixture at a time. When you squeeze the inhaler, the valve is opened briefly and the propellant expands rapidly, forcing the medicine out and into the air as a fine mist, which is then inhaled. Taking an MDI is a bit of an exercise in coordination. Instructions on how to use them properly are provided in detail by reliable medical websites such as Medline, or you can speak with a doctor, nurse, nurse practitioner, respiratory therapist, or pharmacist, all of whom should be able to instruct you in proper inhaler technique. In short, take the cap off, shake the inhaler, hold it about the width of two fingers in front of your mouth, breathe out gently and completely, then squeeze the canister down into the plastic holder as you inhale. Then hold your breath for 10 seconds, and breathe out slowly. It will take some practice to get the hang of the hand-lung coordination.

If you have trouble with taking an MDI properly, or if you are prone to severe attacks, you and your doctor may decide it’s a good idea to add a valved holding chamber or spacer. These are long, hollow, antistatic bubbles or tubes designed to eliminate the hand-lung coordination aspect of MDI use. How to use a spacer varies slightly depending on the design and brand, but typically you insert the MDI into one end, and either put the mask over the face of the person using it (if it has a mask) or put your mouth around the mouthpiece, then the medication is taken as directed by the spacer manufacturer. Spacers tend to be bulky and obvious, so it will usually attract attention and questions if you have or use one.

Let’s say you need a medicine that doesn’t come in a metered dose inhaler, or that you can’t do the breathing necessary to use one, even with a spacer. This is where nebulizers come in. Nebulizers are machines designed to make a mist of your medicine, which you then inhale. Because they tend not to be airtight, they’re not nearly as efficient with the medicine as MDIs or spacers, and as a result, you will have to use more medicine for the same effect. Like with spacers, proper nebulizer use varies a bit from device to device, but if you have one, you can speak to your pharmacist about how to use it. They are fairly straightforward once you know how to set them up, but they’re noisy and time-consuming relative to inhalers.

Next up is dry powder inhalers (DPIs). DPIs are a good alternative for those who don’t like noise or those who find they’re sensitive to propellants or stabilizers (of which I am one – certain brands of rescue puffer have a stabilizer that results in my asthma attack getting worse, not better, so I have to be careful which rescue inhalers I buy). DPIs do not have stabilizers or propellants. Instead they’re use dry, finely ground powder compounded with a bulking agent (usually lactose) contained in a capsule. Using the DPI properly pierces the capsule, and then you inhaling medicine from the inhaler carries it into your lungs. For DPIs to be appropriate for you, you need to be able to make a certain minimum inhalation force because otherwise the powder won’t get carried into your lungs, and so your doctor will usually give you a practice unit which will make noise when you inhale properly. If you’re unable to inhale strongly enough, DPIs are not an option for you.

The last two medication delivery devices are relatively rare for asthmatics. They are infusion pumps and auto-injectors. Infusion pumps for asthma are only used by those with very severe asthma, who need a constant supply of bronchodialator drug (often salbutamol or terbutaline) in their blood system. Often, they use subdermal infusion pumps similar to those used by people with diabetes. I’ve never been severe enough to need one, so I don’t know what they’re like, but they come with many of the same hazards of an insulin infusion pump, and hygiene is very important to avoid infection. Auto-injectors are used by those asthmatics who are prone to status asthmaticus and anaphylaxis. These auto-injectors are exactly the same as those used to treat severe allergic reaction and use the exact same drug (epinephrine) because in many cases, severe asthma attacks are severe allergic reactions. Information on how to use these auto-injectors properly is available from any manufacturer or first aid course.

That’s pretty much it for medication delivery devices for asthma. I haven’t covered any of the out-of-date and obsolete forms of asthma medication delivery devices, though I might examine that history in a later post. In my next post of this series, I’ll talk about home testing devices.

*As an aside, a lot of MDIs contain ethanol as a stabilizer, and this has been known to cause false positives on breathalyzer tests when the breathalyzer is performed shortly after taking your inhaler.

The previous post in this series is here.
The next post in this series is here.

Asthma Education Series, Lifestyle for Asthma Control, part 2: Exercise.

So, I kind of got incredibly busy for the rest of June and had to leave my asthma education month stuff on its own for a while. Which is unfortunate. However, i don’t want to wait until next year to finish the posts I had planned, so I’ll just continue the asthma education series and post whenever I feel like it.

So. This post was a hard one to write without coming off as being elitist or body shaming. If I am, please let me know so I can rewrite it, because that’s not the vibe I want to give here at all.

Moving on: The other hand of the lifestyle coin, when it comes to asthma control, is exercise. Exercise is associated with improved asthma control, according to the best available data. Exercise has a number of other benefits, including healthier cardiovascular system, improved mental health, improved lung capacity, and improved exercise tolerance. For this reason, it’s been advised since the 1980s for people with asthma to exercise.

I will not lie: Exercise can trigger your asthma, and that can range from merely unpleasant to downright scary. However, if you work with your doctor, a plan can usually be devised to allow you to exercise without attacks. Some asthmatic people (myself included) have to take some medicine before we do certain types of exercise. Other asthmatic people find that just having a longer, slower warmup helps.

I will also not lie on the next point: If you are sedentary and you have exercise-triggered asthma, exercise will not be comfortable. It probably will induce symptoms. The best available evidence, however, suggests that if you keep at it, your exercise-induced asthma will gradually become less severe, your exercise tolerance will increase, and your overall asthma control will improve.

(note that this is not the case for exercise-induced bronchospasm, which is thought to be a type of lung repetitive strain injury from high-performance exercise and unlike asthma, is not inflammatory or chronic. EIB will tend not to improve without treatment, even if you push through it with your exercise)

Since exercise can be for many people a trigger, exercising with very poorly controlled asthma or during a flareup can be dangerous. As well, starting a new exercise plan without consulting your doctor might be dangerous. If you want to increase your fitness level, talk to your doctor about what to do and when if you want to exercise but are an asthmatic who is triggered by exercise. Get a plan for how much asthma symptoms are safe for you to tolerate and how soon you can return to exercise once a flare is under control.

There is no hard evidence on what, if any, exercises are better for people with asthma, though many asthmatics (myself included) find that sustained, high-intensity exercises like endurance running to be hard on us while exercises that vary in intensity or which require careful control of breathing like martial arts or swimming to be easier on us. Try out many things and see what is easier on you.

Exercise is not a silver bullet for asthma – it will not replace your daily control medicine, nor will you ever stop an attack in its tracks with some jumping jacks. However, evidence is mounting that regular exercise plays an important role in asthma control and quality of life for people with asthma. If it’s possible for you, starting a new exercise routine may be a good idea for helping your overall health and asthma control.

In my next post in the series, I’ll talk a bit about asthma gear – what gadgets people with asthma can carry, what they’re used for, and how they work.

The previous post in this series is here.
The next post in this series is here.

Yet more counter-productive antibullying efforts.

So. Yeah. I’m sure those in the autistic community are well aware of this, but an autistic boy recently was humiliated in a very specific and degrading manner by bullies in his community. His parents then decided to compound the humiliation by going to the news and sharing the story – and the video of the incident – internationally.

Neurodivergent K already has a good take on this incident, and I direct you to her blog. The gist of her post is basically this: If you’re trying to counteract bullying, then for the love of all you hold dear in this world, don’t do what the bullies want.

In my post, I’m going to say: if you’re trying to counteract bullying, don’t amplify the bullying. By which I mean: This boy was already humiliated. He was already going to be the subject of gossip at the school for the next approximately until he graduates (judging from my experiences growing up). Then, his parents – assumably with he best intentions in the universe, wanting to raise awareness of bullying – share the video internationally.

Do you thing people in the region (they gave their region, by the way) are not going to talk? Holy flying hell in a handbasket, people. From experience in my school: I was humiliated in a very specific and very embarrassing way by some bullies as a kid. I will not detail the experience, but suffice to say it happened (in more than one way, actually – bullies are terrible people). One time, I made the mistake of telling an adult when they asked about some jokes kids were making. Then an assembly was called at school, and the principle lectured the entire school on how it’s not at all okay to do [very specific thing that happened to me] to another person.

If it was possible to melt into my seat or burst into flames on the spot, I would have. Instead, what had been an isolated incident of bullying where the bullies hadn’t told anyone because they were afraid they would get into trouble became the talk of the school. And my humiliation was compounded.

That’s what those parents did to that boy. Except, instead of it being just the school, they humiliated him in front of their entire community. People will talk. They’ll find out who and how and where and when. That’s what they do. And if his parents think he was dealing with bullying before this happened, it’s got nothing on the number of pranks that will be done to see exactly how gullible and bullyable he is in the coming months. His parents just gave the fucking green light to every single nasty prank anyone in his school thinks of, and they painted a hugeass target right on his back.

And they probably don’t realize it.

But that’s not through this being an impossible-to-anticipate consequence. Even though autistic people are supposedly the ones with empathy deficits, it’s because the parents are displaying an extraordinary lack of empathy for their son.

Parents, think of it this way: Think back to when you were a teenager. Think about something someone else did to you that you found very hurtful and humiliating. Think about that. If it’s not an incident of similar severity to what happened to this kid, amplify the humiliation accordingly. Now, ask yourself, “When I was a teenager, would I have wanted my parents to share this incident internationally?”

I am pretty much certain that the answer to that question is “No. No, no, no, no, no. Not in a million years. No.”

Parents, your kids have thoughts and emotions and feelings, and not just about what their bullies do to them. They also have thoughts and emotions and feelings about what you do to them. Think about how you would have felt as a teenager about your parents doing something to you, then decide whether you want to inflict those feelings on your kid. Think about whether or not you would’ve wanted something shared before you share it. Better yet, ask your kid’s permission before you share something concerning them. And let them have the final say. Because you’re not the one who has to live with the fallout. They are.