Self Advocacy

Rheumatologists:

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 and 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).  You still need to be mindful of the doctor’s time, so keep that in mind, but also make sure your questions get answered!

Lack of Research:

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 or rheumatoid disease at all for that matter. Most rheumatoid research is combined with osteoarthritis, which is nothing at all like rheumatoid. There’s a lack of research for obvious reasons too…. 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.

The other piece is who is funding research.  At this point in the 17 year course of my disease, I think I can control a lot through diet and exercise.  Is there medical research to support this?  Not much!  Why?  I believe it is because the pharmaceutical companies fund most of the research with the end goal of wanting to sell us another expensive drug.  Changing your diet and exercising more isn’t going to get them money.  Sad, but true.  And what about these poor folks who aren’t responding well to even the expensive biologics?  Where are they to turn?

We need to be helping each other, banding together.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 decisions 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 have 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

Dealing with a bad doctor:

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/options, 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!  Ok, enough of that tirade!

Knowing your body:

I have found that a lot of my 5 autoimmune conditions can be controlled through listening to my body.  I’ve tried several different diets (gluten free, Vegan, etc…) to no avail.  I started Paleo (extremely restrictive: no grain, dairy, legumes, white potatoes, sugar, or alcohol).  Guess what!  I got answers then.  My body is much more readable now, and I know the following things set me off:

    Tomatoes
    MSG
    White potatoes
    Grain
    Dairy
    Ibuprofen (short term gain, long term loss)
    Not taking Vitamin D
    Alcohol
    High histamine foods (many fruits,balsamic vinegar, green tea)
    Not enough exercise
    Too much exercise
    Chickory root?

Think about trying to tease all of that apart at once!  It was hard and is still an ongoing process.  The bottom line is that there is no substantial medical evidence to support that these things help me, but they do.  And my blood tests show that improvement.  The cool thing is that I told my doctors what I did, and now they want more information and support me in this diet.  How great is that?

Disclaimer: This site is designed to inform and support those with Rheumatoid Arthritis. It is not a comprehensive medical guide to the disease. This information is taken from many different resources. The writings on this site are not intended to diagnose nor treat. People write from their own personal experience and knowledge.  Their ideas are not to be substituted for the medical advice of a practicing physician.

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