16 Ways to Be a Smart Self Advocate.

[RobinN]

I found these suggestions to be quite helpful. I hope you do too.

When we walk into the doctor’s office, for many of us, the scenario looks like this: We list off our symptoms, the doctor asks a few questions, writes out a prescription and we go on our way.

From her work in primary care settings, Risa Weisberg, Ph.D, assistant professor (research) and co-director of the Brown University Program for Anxiety Research at Alpert Medical School, has seen “firsthand how a great many patients accept a prescription from their provider without asking many questions about it, or often, without even knowing for what symptoms/disorder it is being prescribed.”

Such a scenario can stall or sabotage your treatment. Confused, you’re likely left with tons of questions, unaware of what you’re taking and how it’s supposed to help. You may be feeling helpless — a spectator in your own recovery — and hopeless, if the medication doesn’t seem to work or has bad side effects. Your doctor likely is clueless about your real concerns, not having all the information to guide his or her decision-making process.

But you don’t have to feel like a powerless bystander, on the outskirts of your own treatment. In order to become a sharp self-advocate, you just need some information. Here’s some hints for for taking medication safely and effectively. At the end, you’ll also find a basic glossary of common medication-related terms.

http://psychcentral.com/lib/2009/tak...self-advocate/

[Meetz1064]

EXCELLENT article, Robin! EVERYONE needs to read this, veterans and newbies alike!! Some of us vets still need to be reminded of things, and newbies probably really don't know some of the things listed here.

EVERYONE READ THIS!!!

[Crystal11]

Excellent! I've read it and found it to be of help. I realized that my family doctor is so uneducated about Epilepsy. This is when I had to make sure to remember what my previous neurologist would tell me. She told me what I need to look out for, how to take my meds, how and why they worked etc. My new family doctor usually takes care of low-income familes and children or those on Medicaid (myself). He didn't even know how to dose my seizure meds when I moved back to Texas. I told hiim that I'm trying to keep my meds the same until I get a neurologist. So I brought my bottles with me and he entered info on some kind of electronic machine/PDA before writting a script. I thought it was odd, he kept asking "Do you shake a lot?" "What part of your body shakes?" I told he over and over, "I have Complex Partial Seizures, not Grand-Mals". He said, find me contact info and I will write a referal. So I called 60 places just to hear "No we don't accept Medicaid at this time." So here I am, been here a year now without a neurologist and just continuing my old med schedule the best I can. I am lucky that Medicaid is able to help me. Keppra XR alone is now $854 or so! When I asked for that med, or change from Keppra to Keppra XR, to see if it would help more, he said "We will start you out at 1000mg in the morning okay?" I said "Well shouldn't my dose stay the same MG? I am taking 3000mg per day, not 1000mg." He had to think about it and enter it in the PDA thingy.. Made me mad. I had to tell him how to dose my own meds.. crazy. But now I'm going to see neurologist soon.. someone who would know much more than my family doctor. I'm not mad becuase he doesn't know much about Epilepsy- but its scary at the same time.
I can't wait to have a long discussion with new neurologist and have another EEG to see how things are going. Had E.R. trip on the 5th of this month, so might be able to see neurologist sooner.
I hope..

Everyone take care and be safe.
Crystal

[RobinN]

I think this is going to be printed out and I will keep it in Rebecca's medical notebook. Lots of very good suggestions.

[Bernard]

These two books were recommended a long time ago by Ginny @ EFA:

Working with Your Doctor: Getting the Healthcare You Deserve (Patient-Centered Guides)

How Doctors Think

[Shelley]

The cdc has some info: http://www.cdc.gov/epilepsy/
Don't know if anybody has an opinion about the cdc, but the info looks reasonable.

[Shelley]

I was out sick today, and I decided to surf the web to see what I could see.
(And the bear went over the mountain.)

http://www.eeoc.gov/facts/epilepsy.html

[Shelley]

http://www.sciencedaily.com/releases...0917131544.htm
and maybe this one: http://erl.neuro.jhmi.edu/
http://www.growingstrong.org/epilepsy/
for Texans: http://www.dshs.state.tx.us/epilepsy/default.shtm
eek!: http://www.newscientist.com/article/...epilepsy-.html

[Shelley]

While the intro page has flash content, they do give a warning. And, yes, if you are even mildly sensitive, scroll down to the bottom of the page quickly, or engage your flashplayer block program.
It does have an interesting perspective, however: http://library.thinkquest.org/J001619/
I should have said that it is from a kids perspective, although it isn't half bad.

[RobinN]