Educating Your Doctor

What do you do when your doctor has never heard of Relapsing Polychondritis?    

How do you educate a doctor in the 5 minutes you have with them and leave them enough time to come up with a treatment plan? Just imagine you have had all of these squirrely symptoms and you feel absolutely horrible. The people you love are telling you all of the things that work for them, but remember you are dealing with a whole new deadly monster that most have never dealt with. Trying home remedies are fine but with RP you are seriously in danger of losing your life if you don't get some treatment. You can't walk because your knees are too painful, your head constantly hurts, you are exhausted, your eyes are blood shot and blurry, your throat is sore and voice scratchy. You don't have any type of upper respiratory ailment. Then someone notices you have bright red ears and/or a bright red nose? Could you have Relapsing Polychondritis? See Three Ring Circus-Symptoms.

What do you do?

Go to the doctor's appointment prepared. Take a list of all of your symptoms, a time line if you can, pictures of when your body was flaring. Be prepared to leave the pictures with your doctor for their files. Then I always take a flyer with me. I keep them in my car in case I arrive at an appointment and realize I forgot to bring one. Don't be hard on your doctor if they have no clue about the disease. RP is so very extremely rare, that in all likely hood they never heard mention of it. And, be patient with their reactions. Doctors are so very busy and to throw something brand new at them and expect them to research it is a stretch. They may take the flyer, thank you and ask about the disease, they may take the flyer and set it down somewhere or give it to a nurse to go in your file.

Whatever they do BE YOUR OWN ADVOCATE!  

Don't let your questions get passed over. Did you know that most medical services have online profiles just for you, where you can read your test scores, doctors notes and imaging reports. Check them out and ask your doctor about them. I have a wonderful GP that has researched RP on her own time. We need more like her. Help your doctor think out of the of the box, or beyond the Z.

“So, on beyond Z!
It’s high time you were shown.
That you really don’t know.
All there is to be known.”
-:- Dr. Seuss -:-

These three flyers are good to take. They come from the Relapsing Polychondritis Foundation. The first one is just simple and the other two go into more detail. I send a pdf of them off to our little town's local printer and they make copies for me (less cost than my ink). I get the 3rd one printed on a slick thick paper and then I trifold it and bring it along to my doctor's appointments and introduce them to something they've probably never heard of before. It looks as official as if I obtained it straight from the foundation. Download these as a jpg or png. They are for you to use.

"Carry out a random act of kindness, with no 
expectation of reward, 
safe in the knowledge that one day, 
someone might do the same for you." 

-:- Princess Diana -:-