After 10 months of being sick, a girl can learn a few things.
Not just about life, but about process...when to hold 'em, when to fold 'em. I can't tell you how many times I've said to myself "MAN, I wish I would have known that sooner" regarding doctors/treatments/paperwork. So, in an effort to spread the wealth, here are a few things I've learned along the way or wish I would have done differently.
Gotta new rash? Strange stuff coming out of your body? Take a picture and save it (in print and on line). I swear...I'd give ANYTHING to have photos of some of the things I've shown previous doctors...especially stuff from the VERY beginning (rashes, secretions, etc). I know...it's weird...treating yourself like a potential CSI case. But trust me...if things go nutso...you'll WISH you had bothered to save the evidence.
Stop Doing Double Work
If you go to more than one doctor, you will be asked to fill out the same information over and over and over again. Easiest way to avoid that? Make up your own patient history form that includes a list of past surgeries, hospitalizations, accidents, traumas, insurance info, treating doctors, emergency contacts, medications/dosages, allergies, lifestyle habits, and other relevant information. When you get to that section on the patient history form write "see attached." Such a time saver (She says after recreating her patient history for the umpteenth time). Why didn't I think of that sooner?
Copies of doctor's notes, copies of research articles you find, copies of bills. Copies, copies, copies. My friend Delores prints a copy of every internet article she finds related to Lyme Disease and puts it in a binder. Another friend, Cindy, gets a copy of notes after each visit. To get lab results quicker, write your fax number on the order form...that way they will come to you--not just the doctor.
Write Things Down
Keep track of what's happening, when it's happening, and how it relates to outside factors (medications,* monthly cycles, activity, etc.). To view, how I keep track of my symptoms, go here. Have a question that pops up between visits? Write it down (trust me, you won't remember). Then, date the list and take it with you to your next appointment.
Keep Your Cool
This was the hardest lesson for me...especially when dealing with a disorganized or incompetent staff. Initially, I wrote off many offices for lack of getting a return call. One time, I stormed out of a cardiology office after getting booked with a PA instead of the doctor. While I am not suggesting you settle for poor service or rude behavior, I am suggesting you spend your energy wisely. My new motto? I am here to get well -- a job that may require navigating a broken system. Can't get your phone call returned? Fax or have a healthy friend call for you. Need a question answered, but don't want to pay for another appointment? Show up (uninvited) before the office opens. I've had lots of great consults in parking lots or by catching people on the way to the bathroom. Bottom line? Don't let your ego (or temper or righteousness) get in the way of your treatment.
Find a Mentor
After months of being sick with no diagnosis, I felt bonkers. COMPLETELY CRAZY!! The only thing that saved me was connecting with smart, competent people who'd been there before me. When I didn't know what was happening or what to do next, I'd ask them (still do). Then I had to learn to trust their answer (hard for a control freak). Educate yourself. Make your best choice. Then move on. You'll learn who to respect, what makes sense to you, and what path to follow. Just Listen ...to yourself and others.
Have more advice on how to be a smart patient? Please email or comment. I'd love learn from you.
Altered Today: Sharing my secrets, asking for yours.
*6/9 UPDATE...Just got this really great note and med tracking sheet from my friend Pete Smith who can be found on line at raisinglymeawareness.blogspot.com. To see how to use it, Go Here. To access the spreadsheet... Download Pete Meds_Sample. THANKS Pete!