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Welcome to the Self-Advocacy Page!
Hello all! We've had our site up and going for about two years now. This website has been very eye-opening to me. I've been able to talk with women from all over the world who have all different types of arthritis, all different types of health care, all different types of experiences. I get a lot of e-mails from women saying, "I'm on this medicine and want to get pregnant. What should I do?" I always feel bad because I can't tell them what to do. They're looking for answers, but I'm not a doctor, I don't know everybody's health, I can't give my opinion. Quite honestly, that has been very difficult for me as I hear from women who are struggling with these huge life-altering decisions (my health or a family!!!). Agh! How difficult this is for all of us!
Then, one day, we got a forum poster named Tomoko! Thank you, Tomoko! She was struggling with similar issues around medications and getting pregnant. You can read that forum thread here:
Enbrel or Predonisone
Anyway, I thought that Tomoko should print out some information on her meds, take it to her doctor (her doctor could determine whether or not the research was any good), and spark a discussion about her current concerns and treatment. Apparently, Tomoko and her husband did just that, had a wonderful discussion with her rheumatologist (who presented her own research), made some minor adjustments in their plan, and walked out of that appointment feeling well-informed and comfortable with their decisions. Horray!
So, that really got me to thinking about the focus for our site. I think I've been without a clear direction for sometime, but feeling that all of us getting together had to be a good thing, right? So, I'm finally starting to see where we need to go. We need to learn how to advocate for ourselves! The reality for us is that we don't know what the "right" decision is. There may not be a clear right and clear wrong. We do, however, need to be informed.
Do any of you fear your rheumatologist? I think most of us were raised that doctors are all-knowing and not to be questioned. Do you ever leave the office thinking, "I should have asked about blah blah blah"? Me too. I think we need to redefine how we think about our doctors. Not only do they manage our health, but they also are sources of information and a guide for our future health. On the flip side of that, doctors don't know everything (wouldn't it be great if they did, though?). I don't think there's anything wrong with making sure your doctor is well-informed with current research related to your care. When I first went to see my OB when I got pregnant, I took her tons of stuff about Enbrel. She was very receptive, and she should be! This day in age, with the internet and news, there's a lot of information out there that we, the patients, have access to. We need to take advantage of it. Spark that discussion with your doctor. Ask her/him what research she/he has. Don't be afraid! Imagine the satisfaction of walking out of your appointment understanding the reasons for your doctors recommendations. Think about the reality of when we don't (well, I read this, but my doctor said this... I'm so confused).
There's more than talking to your doctor though. Our poor doctors have to deal with the fact that there's not a lot of research out there on meds during pregnancy. There's lack of research for obvious reasons.... nobody wants to take risks when it comes to having a baby. The reality is that we all take those risks though. Some of us may stay on Enbrel. Some of us may stay on Prednisone. Some of us may take herbal supplements. It's all a risk.... even eating the food in our environment poses a risk when you think about it. Get online, ladies! Look for research studlies! There are studies out there that don't control what you do, but just follow what you have done and look at the results. Enroll! Find them and enroll! Imagine if we could make it so that these desisions aren't as hard for the next woman with RA because RESEARCH says THIS. Don't you wish you had more information to go on for your circumstance? Me too! Only we can make that happen!
The other thing you can do is to share your story. Share it with women so that they can help advocate for their own case. We are starting a thread on our forums for moms to post their stories. It will take some time to write the post, but will give other moms a person to talk to who shares their same medication decisions and struggles. Of course, mom should not follow a certain course of treatment because another mom did. It's still nice, though, to have a fellow mom who knows the same struggle.
You can read instructions for this thread here: Mother Stories
Ladies, if you have any other ideas on how we can be advocates for ourselves or others, please e-mail me. Check out the "contact us" page for my e-mail for information.
February 2009 Update:
Ladies, I am so upset lately with some of the stories I'm hearing about the "care" we are getting. I don't mean to bash doctors because I have a lot of respect for the profession, HOWEVER, I am hearing about these women with RA who WANT to become mothers. Some of their rheumatologists are YELLING and SLAMMING doors at them saying, "don't get pregnant!" I am so ANGRY about this, I could just scream. Whether having a baby is dangerous for you or not, your doctors have absolutely no right to speak to you this way. You are PAYING for their OPINION. Their job is to educate you on how to keep yourself healthy and the risks/procedures/etc.... with becoming pregnant. If you have a doctor yell at you in an inappropriate manner, my opinion is scream right back, make a loud stink in the waiting room, demand your money back, and get a new rheumatologist!
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