Lots of introductory posts this week! Here’s another one, from Swatibee, who will be using the gorgeous Temperly Compact as an ER Binder for a medical condition she is facing. Personally, I am hoping that Swatibee is able to find answers soon, and that this awesome binder idea can help others in similar situations!
I’m Swatibee and I asked to join this project to create what I am calling my ER binder. I have a condition where I have life threatening anaphylactic reactions unexpectedly. I’m not actually being vague on purpose, at the moment the doctors aren’t sure what is causing the reactions and both skin and blood tests have proved unhelpful, suffice to say something or multiple somethings can kill me, we just don’t know quite what they are yet. I’ve always had headache inducing sorts of allergies and an increasingly severe reaction to bees caused me to start carrying an EpiPen years ago, but that felt like mainly a precaution (bring your umbrella and it won’t rain sort of thing), so my more recent stuff has taken some adjusting. And what’s better for adjusting to new life things than a new Filofax I say 😉
Okay on to the binder! What I want to create is something that can essentially speak for me, from admission into the hospital, through my basic medical history and current medications, and continuing with space to record how that ER trip went and what I need to do to follow up about it. Previous to this I’ve had some bits of information behind a divider in my everyday Filofax (pocket sized and stuffed full of everything all in tiny print) but after three trips to the ER with anaphylaxis in less than a year I’m realizing this isn’t sufficient as only I can read my usual Filofax plus it’s private and I prefer not to hand it over.
If the past is any indication then along the road to better understanding what’s going on with me will be more ER trips and EpiPen injections (my EpiPen is on my person attached to my belt at all times when I’m out of the house, there is a second one in my purse and another backup on the fridge at home, I’m prepared for an injection at any time. Okay, I’ll try not to get very graphic with the needles from here on out and I promise pictures of Filofax related things only 🙂
The thing is, while I’ve got the medicine on me always, once you call 911 (or get driven to the hospital depending on how bad my reaction is) there are things the doctors want to know, and I can barely remember my name if I’m having a reaction. For me anaphylaxis makes me essentially very stupid. Instead of the more often shown in the movies version where the person’s throat closes up first and they are struggling for air but totally aware, for me my blood pressure drops first depriving my brain of oxygen and making me quiet and calm and still and very very out of it. I get disorientated and dizzy so at the time I most need help I’m least likely to be able to ask for it. For example at my most recent trip to the ER I couldn’t even remember the first digit to my phone number.
I was so excited to be chosen for this project, and even more excited when I opened the package (and now chagrined that I was too excited to remember to take a picture with the green envelope, pictures are sadly not my string suit). I received the Temperley for Filofax Violet compact and oh my goodness did I fall hard for that binder. The leather is so smooth under my fingers while having cool texture and pretty yet seems like it could take a beating in my purse (which after all is the idea since its going to be with me all the time).
Here she is all closed up
And open (she doesn’t lie flat so those are my remote controls holding her flat)
Isn’t she just amazingly stunning! The downside is Janet was not kidding when she said the rings were in bad shape, the bottom most ring isn’t even vaguely oval, let alone round, anymore, it’s more like the shape you get if you’re me a d try to draw a circle without a guide, it goes round but the end never quite matches up with the start.
Here is a picture that gets close to conveying the level of skew these rings had
And another, sorry for the blurryness my camera and I have never tried to photograph up close shiny things, I tried the paper inside the rings trick to show things but it’s amusingly even more obvious without the paper)
I have such plans for this binder, I’m going to use the outside zip pocket for prescriptions and cards and such given to me in the hospital that I need to take home with me (this being Canada we don’t get a big envelope of paperwork each time we go to the hospital so it’s surprisingly easy to lose the one small slip of paper). I thought of this after a recent specialist appointment when I spent a panicked couple of minutes looking for the requisition for bloodwork he’d given me and that I had of course tucked somewhere “safe”. This back pocket shall be my somewhere safe.
The inside change purse pocket will hold a tourniquet as the ones used in my area I’m allergic to (they’re non latex but vanilla scented which makes me break out in hives which is obviously bad, medical personnel have used a nitrile glove tied around my arm before but that’s less than ideal). Also some Tegaderm as I’m allergic to most kinds of tape. You’re beginning to see why I need an entire organizer for medical emergencies aren’t you 😉
On the rings will go sections for various stages of ER information and I think also my basic contact information at the front in case it should get lost. I’ll go more into those bits in the next installments.
Back to the binder itself. I tried some of the ring fixing techniques that have been discussed and recommended by Steve as well as other people such as opening and closing the rings a few times. I also tried holding the mechanism open (with the levers pressed down) while forcing the offending rings inward, but since a whole set of three was bad with the bottom most being the worst, I wasn’t too surprised when this didn’t fix it enough.
In the end I admitted that these rings aren’t fixable and the mechanism needs replaced. I emailed FFUSA customer service, having had good interactions with them in the past, and sent some of the pictures you see here and very quickly got a reply to mail the binder to the along with a case number to put on my package. Now I wait for them to receive it and assess the damage, if they could swap out the ring mechanism that’d be grand but I don’t think FF does that so I expect I’ll get a whole new binder. Hopefully it won’t be too long until I have a lovely Filofax in my hands once again 🙂