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.

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Here in realityland – or, why “never say never” irritates the hell out of me.

Trigger Warning: Ableism and allusions to gaslighting and emotional abuse.

First, hat-tip to Kassiane of Radical Neurodivergence Speaking for teaching me the phrase “here in realityland.” It is a wonderful phrase and perfectly articulates what I want to get at.

Namely: That never say never, you can do anything you put your mind to, and all you need is determination and you can overcome anything, and similar cliches are a pile of steaming elephant dung.

Why?

Because the fact is, here in realityland, disabilities exist. Chronic illnesses exist. Poverty and oppression exist. Racism and sexism and other isms exist.

And all of those come with real limitations and effects on a person’s life. Which those cliches serve to erase.

Take me, for example: I have asthma and allergies and speech impediments and a variety of neurological/developmental thingies that haven’t yet been formally diagnosed but exist all the same and have always been attributed to my prematurity, which is probably right but actually means that I should’ve been diagnosed as a kid instead of using, “Oh, well, she’s premature so she’ll be behind on that” as an excuse to deny that my limitations exist.

I was born very premature. Very, very premature. Like doctors-gave-me-coin-toss-odds-at-survival premature. And told my parents if I survived, I’d probably be intellectually disabled. When it became obvious I was gifted (when I taught myself arithmetic and reading at 2), my parents called me their miracle baby and proceeded to fiercely deny any possibility of me having learning disabilities or motor issues. Even though, by two, I was already behind in some areas. Because that wouldn’t really fit with the cut of their miracle baby jib. There’s history and baggage to be unpacked there (including the fact that it is entirely possible to both be gifted and have a learning or developmental disability – the two are not at all mutually exclusive), but it’s not relevant right now. Anyway.

What is relevant is that prematurity left me with long-term consequences, my parents’ repeated and vocal insistence that it didn’t notwithstanding. My wonky immune system, which causes my allergies and asthma, is one of those consequences. My digestive nerves don’t work right, which results in something similar to IBS on steroids if I vary my diet too much or eat badly. I have coordination issues (I was 9 before I rode a bike and 12 before I could throw a ball in anything close to the right direction and don’t ever under any circumstances ask me to go to bat for your baseball team since my batting average is about 0.0suck), my brain likes to misinterpret ordinary stimuli so that sun makes my eyes want to explode and clothing tags feel like a million mosquitos bites all in one area, and I’ve always screwed up social stuff.

Throughout my life, I’ve plowed through the problems that I find I can plow through and developed workarounds for those I can’t. But, the fact is, some of the stuff is stuff I can’t plow through. I can’t overcome it. I might be able to figure out a way to go around it, but I can’t overcome it.

Stuff that is can-not-do: I can not write neatly. I can manage legible printing, but don’t ask me to do cursive, and don’t ask me to handwrite a sign for you unless you happen to like that “I think a kindergardener made this” look to it. I can not go for a run on a high pollen day and not expect to be reaching for my inhaler about a quarter of the way in. I can not do drive through work at a fast food joint. I tried. I was so spectacularly incompetent they never let me try again – and this is a place where showing up to work 3 hours late for every single shift would get you fired only after a year of doing it. What I’m saying is the standard of employee competence there wasn’t high. I can not sew or do most other handwork for the same reason I can’t do neat handwriting: Thanks to my utter lack of fine-motor coordination, it takes me a good half hour just to thread the damn needle.  Etc.

Now, stuff that I know is can-not-do, I have spent months – or, in some cases, years – trying to stubborn my way past them. I’m a stubborn person. I did a major martial arts test – so challenging that even one in ten CAB people in peak condition who take it drop out from sheer exhaustion – with 65% lung function and a raging case of bronchitis. I finished, and I passed. I refused to take any time off school when I caught mono (don’t do that, by the way – now that I’m more knowledgable, I wouldn’t take the risk of infecting someone else who could get seriously ill from it). I have finished writing university exams before going to the emergency room for an asthma attack, and I once was ordered home from class because I attended with a non-contagious case of pneumonia. My will to succeed is strong enough that it sometimes exceeds my instinct for self-preservation, is what I’m saying.

So, being that stubborn a person, you can bet your ass that if there’s a way to overcome something, I’ll plow right through it. It might take me longer, but if climbing the mountain in front of me is possible, that’s the way I’ll go. I’ve overcome predictions I wouldn’t ever be able to walk long distances or run because of my asthma (I do both regularly). I’ve overcome predictions that I’d never be good at anything physical by becoming good at martial arts. I’ve overcome assertions that I was destined for a life of crime and jailtime (Hi, elementary school teacher who knows who she is. I’m looking at you, here. Yes, I remember that. No, I haven’t forgiven you). That’s overcoming.

Sometimes, I can’t climb the mountain, but maybe if I’m lucky, I can find a way around it. That’s self-accommodation. I self-accommodate a lot. Case in point: I use electronic copies for my work whenever possible – don’t ask me to keep hardcopy stuff organized, I can’t. I can organize it, and put it away, and never have to look at it again, but if I’m taking stuff out on a daily or weekly basis, it will slooowly migrate from the bookshelf or my filing cabinet or wherever have you to any horizontal surface in my place. Don’t try to sell me on some organizational strategy: I can guarantee you, I’ve probably tried it and found it unhelpful. I can’t stay organized in meatspace. But I can – and do – bypass the issue of meatspace organization by working electronically. I could list off a few dozen other examples, but this is what I call self-accommodation.

And then there’s limits. Limits are can-not-do things for me. I can not stay organized in meatspace. I can not write neatly. I can not go from a luncheon to a conference gathering to a supper to a party unless I particularly like passing out from exhaustion in public or collapsing into a sobbing mess – if I’m very lucky, making it somewhere private before I reach critical mass, and if not having to deal with the social fallout of pushing my limits and having something inside me go snap. I can not expect no trouble if I go for a run on a smog day. Etc. Limits are things I might be able to work around, but not through. Limits are what makes me need self-accommodation.

That’s real-world, to me. It’s not pessimism or defeatism for me to say, “Don’t get me to hand write that, but I’ll be happy to type it up for you,” it’s a realistic assessment of my abilities and weaknesses. Here in realityland, as K would say, limits exist, and you can’t just “Work harder!” and “Willpower!” past everything. Some stuff, in the real world, is cannot do. Just like average sedentary Joe on the street can’t climb a cliff at the drop of a hat, there are things that I can’t do. And just like Average Jane might not think the payoff of months or years of training, thousands of dollars of equipment and equally expensive lessons is worth it to be able to say, “I can climb a cliff!” I don’t think it’s worth it to spend months or years, money on specialized equipment and coaching to learn how to bat well. I probably could learn, but that much expense to say, “I don’t have a batting average of 0.0suck anymore!” = not worth it.

And that’s even ignoring the fact that some stuff are just outright can’t ever do. For someone with paraplegia, that might be walking or running without assistive technology. For someone who’s Blind, that might be reading a small-print book.

For me? For me, one of them is cursive writing. I’ve done the months and years of training. My parents spent hundreds of dollars in specialized pens and pencils and grips and wrist braces and other gadgets. And I had coaching from parents, teachers and occupational therapists. Two hours a day, every day, seven days a week were stolen from my childhood for four years because it’s apparently unthinkable for someone in the world of internet and computers and typing to be unable to write in an arcane and obsolete script. I can’t do cursive. Deal with it. And I will yell at you if you ask me to try more and work harder to climb that particular cliff face because writing in cursive isn’t that hard and that writing doesn’t hurt so what am I complaining about?

No. Fuck you. I’m done. I’ve tried enough. I’ve worked hard enough. I’ve toughed it out long enough. And I’ve failed, every single time. Yes, for me, it is that fucking hard. Yes, for me, it does fucking well hurt. I can’t do it. I’m done punishing myself for it. And I’m done letting others punish me for it. I’m done letting others hurt me for it.  I’m done putting upr with your demands that I subject myself to more pain and frustration and wasted time trying to climb this particular cliff. No more.  I’m done.

That’s what denying limits does. It hurts people with the limits in question. It damages us. It might cause us physical pain. It might cause us mental pain. But it hurts, damn it. Stop pretending that never say never is an absolute. Here in realityland, it’s not.