So having POTS means lots of information, paperwork, and running around to doctors. The easiest way to stay organized is to create a POTS Binder. Get a 3 ring binder, and either buy or make dividers. Keep it clean looking and undecorated, because doctors already tend to think POTS patients are a bit whacky, and you don't want your Spongebob sticker collection (or any others!) adding to that.
You can put whatever you want in it, but here are some suggestions for info and categories you may need when going to a doctor, the ER, or dealing with insurance or disability (in no particular order):
*Medical Records/History: I'm starting to gather these for two reasons;
a) I can't always remember everything, and it's handy to have things like lab results available when you need them.
b) I've seen that my experiences in the ER or with a hospital stay can be quite different than what the doctors report, and they sometimes need to be corrected. It is a good idea to keep copies handy both for review and to reference when with other specialists.
*Symptom List: and I suggest including ALL of them, not just the targeted ones you think that doctor deals with. I had an ENT first mention Dysautonomia to me many years ago because I brought up all the whacky stuff that I was dealing with outside of just my ears. He just happened to be familiar with Dysautonomia, and made the suggestion that I look it up. So - you never know! Many doctors do fellowships at specialized hospitals like Mayo or Vanderbilt, and may know something extra that will help.
*Medical Journal Articles: see the other post with links to these here. Instant cred with your doc that you have done your homework, and provides them much needed research info and resources if they don't have them (and chances are they don't).
*Your official diagnoses: Who, what, where, and when.
*Any standing orders or instructions in case you end up in the ER: If you have a good primary care doc that knows you need IV fluids when you crash sometimes, they may be able to write or sign a standing order or recommendation for the ER docs. I've had very little luck with the doctors listening to me when I end up in the ER, and sometimes lay there for hours waiting on lab work, and all I need is a bag of fluids. This is also where having an explanation of hypovolemia vs dehydration comes in handy as well!
*If you are going to a specialist, a list of questions for them. I always forget something if it isn't written down (gotta love that brain fog), and in the weeks leading up to the appointment I keep a running list with me to jot things down as I think of them. Have extra paper in this section to take notes on your visit.
*Don't forget a pen!
That's it! I think of going to a new doctor or the ER as going into battle (how sad!), and this is your weapon. It shows them that you are not just having a panic attack, and are not crazy, and that they need to listen to you because you are prepared and educated about your disease. Doctors take an oath to do no harm, and you are a paying customer, and if they give you a hard time or have an ego about being offered information, it may be time to find a new doc!
Good luck and I hope this helps!
- About Me/Contact Info
- POTS: An Overview
- LIBRARY: Medical Journal Articles
- Upcoming Events/Support Groups
- Physicians Treating Dysautonomia in VA/DC/MD
- Resources for Family and Friends / "In The Press" Links
- Web and Resource Links
- Tools / Tips for Patients
- An Open Letter To Doctors (Regarding the Anxiety Bias)
- Silly POTS Stuff
- FIND YOUR POTS CAUSE
- Personal Posts (My Journey)
- POTS, Pregnancy, and Parenting Oh My!
- Dysautonomia SOS: Searching Out Solutions - A New Nonprofit!