A good reminder

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FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/2/2008 6:50 PM (GMT -7)   
To advocate for ourselves:
http://www.cnn.com/2008/HEALTH/10/02/ep.evan.handler.patient.advocate/index.html
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/2/2008 7:10 PM (GMT -7)   
quite true!
But he pointed out a very good question, what do you do when you just become so exhausted to advocate for yourself?
What do you do if you have no one to advocate for you? and your patient rep sucks.
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/2/2008 8:46 PM (GMT -7)   
Hey Fitzy,

Thanks for the great article. I hope you don't mind, I'm going to highjack this thread for the Lupus forum.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 10/2/2008 9:16 PM (GMT -7)   
Couldn't have been written better! A great message for all of us.
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-yr-old girl


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 10/7/2008 3:08 PM (GMT -7)   
GREAT article Fitzy
Thanks for sharing

LYN
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
                                    Donate at  www.healingwell.com
 
Moderator @ Alzheimer's,Co Mod @ Anxiety/ Panic,Co Mod @ Crohns 
 
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CrohnieYogi
Regular Member


Date Joined Oct 2006
Total Posts : 367
   Posted 10/7/2008 7:58 PM (GMT -7)   
Great article! It's amazing how long we will stick with physicians that we need to fire. It's also amazing how willing we are to sit back and blindly let physicians make decisions without our input. It's time people stand up, learn all they can about the disease that afflicts them, and take part in their care.

Sorry, I'll get off my soapbox now!
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