Swatibee is back today with her second post for The Medical Project. You can read part one HERE.
Having sent the Filofax itself back to FFUSA I am currently binderless. As I’m sure many of you can relate to, it is difficult to try to complete a project without everything you want available all at once. I was very tempted to ask for an extension due to absent binder, but while the Temperley is my dream binder for this project the project itself needed to happen anyway so I’m using the time pressure of these posts as motivation to keep going right now 🙂
One thing that gets talked about a lot with Filofaxes is how to plan for the unexpected. The greatness of Frixon pens is expounded upon as they are loved for their erasability, the option to have more space for extra notes or to turn a page per day setup into a two page per day just by opening the rings and inserting blank sheets is highly praised by nearly all of us. People talk about leaving room in their busy schedules for the inevitable extra things that crop up and how to prioritize the mid-level urgent tasks.
My posts here are also a bit about the unexpected, but a less common (one hopes) sort of unexpected, the medical emergencies. I’m talking specifically about anaphylaxis since that’s my most severe unexpected emergency (I also get hives and things but those don’t merit their own binder thank goodness).
In between applying to join thus project and receiving the binder I went to the ER yet again and that really reinforced for me the importance of creating a working binder, so even without the Temperley in my hands I continue on. I have mocked up on index cards what my plan is
This will be the first page upon opening, the “If lost” page, then the general Filofax registration page. That is immediately followed by the “In Case of Emergency” page, as that’s rather the point of the whole binder. I’m hoping not to actually use those pages but they seem important to have all the same.
The actual plan is for me to have the binder on me (and be conscious enough to hand it over) and the binder (once it is a binder if course) will speak for me from admission through the basic medical history questions they always ask, for me anaphalaxis takes away all my thinking power so this is especially important.
I’m even working on a page so I can write down the most important bits of information while I’m still in the hospital, most important are my blood pressure readings (if I can get them before all the meds bring them back up to normalish range) and obviously the post hospital instructions, though generally that’s just to come back again if I’m doing poorly, and of course to try to avoid the thing that made me allergic in the first place (always good advice, and nearly impossible since we don’t know what all of those things are yet).
The sections themselves are a work in progress, so far I have nine of them. More than obviously needed since there are only a few things behind any given tab, but I want this to be easily read and referenced by anyone picking it up in the ambulance or hospital. Registration information (for hospital personnel), medication allergies, meds I’m on, typical symptoms (since I have a less common presentation for anaphylaxis its helpful for them to know that I’m disorientated), history, this ER, scratch paper, prevention (this may not be its own section I’m still deciding, more to follow a bit after in this post), call 911. So these are my tabs on post it notes
I had to have a scratch paper section since paper and pen are something of a security blanket for me, for someone else I might also suggest some crosswords or sudoku puzzles (a favourite of mine) but I’ve learned from experience that if I’m in hospital for anaphylaxis I’m too out of it to be bored and can sit quietly in a bed for quite a few hours (which is quite unusual for me in my normal life) so there’s no need to have anything with which to entertain myself.
The prevention section so far simply has one of the typed slips if paper I made up recently to give to to waitstaff at restaurants. I generally only go to a few places where I’m super familiar with the food and know what is safe for me. Added to that most of these places have no nuts on their menu so that is instantly less of an issue). I am however occasionally invited out or end up somewhere new, or I go traveling and I figured out the problem often came in conveying my exact allergies and the severity of them back to the kitchen, thus the card. I’m hoping to print these up on proper business cards, just the basic perforated ones that go through the printer at home, but for the moment at least they exist.
The last thing I wanted to show you isn’t going into the binder at all but will be used before the binder, this is my EpiPen (no needle showing I promise)
I designed and ordered these stickers that I’ve added to the outside of the case, the sticker reads “Call 911 / anaphylaxis / (see MedicAlert necklace)”. I made them after realizing that my plan of calling 911 and it being fine if I passed out after I’d dialled since they could just look up the address from my phone number and then send someone to me was based on old technology (when the phone to call 911 on still plugged into the wall) instead of my actual life (where I don’t even have a landline). In these days of cell phones I need someone more conscious than me to call and tell the operator where I/we are. My friends and family know to do that and they know what is wrong as well, but I worry about something happening if I’m not near anyone I know. This means I don’t have to explain what’s wrong and that’s comforting.
I have been among the first responders at enough car accidents to know that people, however well meaning they may be, freeze up in an emergency. Most people get scared and confused and forget the basic stuff, such as in any medical emergency call 911 they are trained to help you figure out if you need an ambulance and those ambulance workers are trained to figure out if you need to go to the hospital. Also since my wrist problems prevent me wearing my MedicAlert on my wrist its useful to point out that it exists, should I be truly passed out. The plan is that if I’ve got it together enough to get out my EpiPen and inject myself then after that all I need to get someone to help me is clearly written on the case itself (which should be essentially in my hand). I haven’t had to test this out yet but I expect it will work well enough as clear directions and once on the phone 911 operators are amazing at getting what information they need out of the people who have called so that should go fine. Still going to keep hoping I have reactions when I’m with friends however as the process is infinitely nicer that way.
Hopefully I’ll have the binder itself to show you by the time I next post 🙂
No binder yet but I get to practice patience 😉