Sunday, 2 June 2013

Keeping Track

One of the big issues with lupus is trying to keep track of everything: symptoms, medications, doctor's appointments, etc.  It gets especially complicated when we're suffering the dreaded brain fog, and would be lucky to remember how to put our shoes on.

So here's two alternative tools you could try to help you manage the barrage of information you need to keep track of to manage your lupus:

Purple lupus awareness ribbon

 The Lupus App

You can find this on Android and iPhone.

It's developed by super-awesome rheumatologist Dr Shashank Akerkar.  (What makes him so super-awesome, you ask?  Unlike the rheumatologist who charges me $160 per visit, Dr Akerkar actually believes in giving patients information.  And he doesn't just give information to his own patients, but puts it out there on the internet for the rest of us as well - for free.)
Menu options are patient, the lupus, doctor, about app.
Main menu of the Lupus App.

What you'll find on this app is:

  • General information about managing lupus.
  • A glossary of the terms your rheumatologist and other doctors are likely to use.
  • A place to track all your medications
  • A place to track all your doctors' appointments
  • A place to keep a summary of your medical history.
  • Useful links (including Arthritis Support Board - Dr Akerkar's own site.)
  • A place to note symptoms and health concerns to discuss with your rheumatologist.
  • An option to email your rheumatologist (if your rheumatologist is the kind that would accept patient emails.)

The "Doctor" page on the menu is about Dr Akerkar, and how to make appointments with him.  This bit I'm not likely to use, because he's in Mumbai, which is a fairly long way to travel from Brisbane for a rheumatology appointment. It does give the
Picture of Dr Akerkar
Dr Akerkar
option to contact Dr Akerkar on Facebook, Twitter or email, and I know a number of lupies from all around the world do contact him for information from time to time. (Let's not overwhelm him, though, he does have his own patients to take care of as well.)

Oh, did I mention you can get the app for free? That's another big plus.

Lupus Book

If you prefer to keep track of things on paper, the Lupus Book may be more your style.

I wrote this to track things for myself. The disadvantage with the book, as opposed to the app, is that it's bigger and bulkier and you need to remember to carry it.  The advantage is that you can tuck referral letters, prescription repeats, etc in between the pages, so everything stays together.

page has columns for drug/dosage/frequency and notes
Medication section of the book.
There are pages for medical history, contact details of doctors, next of kin.

There is plenty of space for tracking medication, so that as it changes, one line can be crossed out and a new one written in at the end.  It's not as neat as changing a line in an app, but you see what changes have happened over time.

The largest section of the book is for appointments.

Each appointment fits on a double page, allowing space for details of which doctor/therapist you are seeing, time and place, as well as things you need to do before the
Page includes details of appointments, things you need to do to prepare, new prescriptions needed, questions, changes in symptoms, etc.
Appointments page.
appointment, questions you have and things that have changed since your last appointment. It also has the all-important section for prescriptions you need.

The idea is to fill in things as the occur to you between appointments.  If you notice you're running low on repeats for a medication, write it in the book when you notice, so it's there when you go to your appointment.  If you notice a new symptom, write it in the book when it happens, so you don't forget to mention it next visit.

Because it's a book on paper, the publisher would have some problems with it being free, but I can tell you the cheapest place to get it.

You can buy direct from the publisher here: It costs $12.60 (Australian) plus postage.  Because Lulu is a print-on-demand publisher, they usually get the book printed for you in your own country to minimise postage costs and to save the environment the effort of shipping things huge distances.

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