Being a good patient

As many of you know, I am a chronic pain sufferer due to the herniated discs in my neck and back, as well as my fibromyalgia [you can view some clips from a documentary about Fibromyalgia here].  


Today, I came across an awesome post from Kathy, a fellow 'professional patient' about how to be a good patient - you can check out that great post here.  Some of the ideas that Kathy had include the following, and I've added a few of my own, in random order:

Compliments of St. Vincent's Hospital

-Document all your symptoms with photos and written word so you don't forget when you finally get to the doctor's office


-Make lists of all your meds, procedures, who you have seen and when, so that when you go to a new physician, you can just give them a copy instead of writing it all out again


-Get copies of everything!  I now have a huge 4" binder [which I upgraded to as my 2" binder was getting too full].  In there, I have copies of my doctor's notes, all the medical correspondence between my physicians, the application that I submitted for disability, brochures and info I receive from the pharmacy about new meds, as well as copies of all my prescriptions so I know what was prescribed when.  I have another binder for all my fertility stuff, applications, receipts, med info, BBT charts, procedures done when, where and why, ultrasounds , etc.


-Keep track of your symptoms.  I enter all this info onto my computer calendar.  I track really bad days, I track bad 'episodes', I track abnormal cramping, in addition to all my medical appointments/physio/acupuncture, etc.


-If you are attending an important appointment, feel free to take notes during the appointment or  bring someone with you who will have a 'clearer mind'.  Freddie went with me to see the neurosurgeon as I was worried that I wouldn't remember all the info.  In lieu of that, bring a tape recorder or a video camera and tape the appointment [someone on Kathy's blog posted that one :-) ]


-Prepare for your appointment by making lists of all your questions and things you need to talk about.  If I don't prepare appropriately, sometimes I miss or forget about something I wanted to discuss and we all know how difficult it is to call a specialists office for more info.  Also, make sure that you ask WHY something is being recommended, WHY this treatment is sought after, WHY this drug might help....and don't forget that you have the right to refuse treatment if it doesn't make sense to you.


-Talk to folks in the waiting room. Many of them are there to see the same doctor or another similar specialist in the practice. They may have great advice about meds that have worked for them, treatments that are helpful and things to consider.


-Be on time.  It's hard to demand your doctor's full attention if you arrived late and are cutting into someone else's time.


-Be honest with your physician. They can't help if they don't know exactly what is going on with you.  This is no time to be ashamed or shy. If you are taking supplements or herbs, or practice some alternative therapies, tell them.


-Be nice!  I realize it's hard to keep your cool when you first see a med student who asks for your entire history, then the resident arrives and you answer all the same questions, and then finally your doctor enters and you repeat yourself for the third time.  I have often thought "You have my chart - can you read??"  If you are at a teaching hospital, this inconvenient practice will come up often. Just think, you are helping shape future doctors...and it unavoidable.


-If you don't feel comfortable with a resident or med student doing a procedure, SPEAK UP.  You have the right to being treated by a professional.  I can recall the last epidural that I had for my herniated discs a few years ago.  I had had this procedure done by my physician twice before, with very short lived results, so when I was asked if I wanted it again, I said sure, why not.  A student came in to do it with whom I didn't feel comfortable at all, but was scared to speak up as I didn't want to offend this person.  The injection was supposedly done correctly, but I immediately had excruciating pain, my blood pressure dropped down to 60/40 and I immediately regretted the decision.  I lay on the gurney for over an hour and was finally released when my blood pressure rose to 90/60, but the pain lasted a long time.  So speak up!  Don't be afraid to ask for what you need.


-Get a second opinion if you feel one is warranted.  Sometimes, as patients, we feel that we have to trust our doctor, but at times, your gut tells you that you are not happy with what you are hearing. GET A SECOND OPINION!  Your doctor won't be offended - and if they are, then they have something to hide.


I know there are things I haven't thought of, but feel free to add to the list.