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Sunday, June 24, 2012

Finally...a diagnosis. Now what?

I think the hardest thing for me to hear from someone with RA is that they were just diagnosed. It's because I know. I know how scared they are. I know what's ahead on this journey they are starting. I know that every aspect of their comfortable, familiar world will change. Part of me just wants to sit them down and teach them RA for Dummies, Emotions101, Accounting with no Income, and Medications for Beginners. Hahahaha maybe I should be handing out degrees at the end of it!

All joking aside there is so much information that needs to be taken in. Unfortunately there is quite a bit of misinformation that can get in the way and cloud your judgement. So how do you know what to believe, what to try, what to stay away from?

I think starting off thinking logically and using common sense will go a long way. Many will say change your diet. They swear they started to feel better as soon as they changed their diet. Well of course you will! Anytime you start to eat healthier you body responds in a positive way and you will feel better RA or not. In the end you will still have RA. Foods do not cure RA, foods do not stop the progression of the disease either. Same rings true for those supplement drinks.

The earlier you start the medications the better. The side effects aren't fun I'm not gonna lie. Educate yourself on the different drug classes and what they will do for the disease. Remember as harsh as these medications are the overall benefits out weigh the risks.


One last thing. Only take medical advice from your doctor. They went to med school. You hired them for a reason. I know once you tell the world you have RA every one's the expert. Everyone has a cure. A remedy that will fix you. Stop and put things in perspective. Would you walk into a restaurant and expect the head chef to know how to fix the transmission on your car?

5 comments:

  1. Hello,

    As a non RA girl, I have to say all of the "experts" that come out, are there out of love and desperation to help. It feels helpless to not be able to take away your pain, and make you feel better. We wish there was a way we could help, not realizing our unsolicited advice harms. Take it as a hug...because that's how we mean it.

    Love,
    Kara

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  2. Everyone has a cure that is true, but I think it is vitally important for us to not just take advice from our doctors. Many doctors are behind on drug information, don't believe additional diseases like fibromyalgia exist, and fail to listen to very real reactions and complaints that go along with medications. Finding a support system that is accurate and not full of fake doctors is I think the saving grace for many people who are diagnosed - simply because doctors are human and cannot be infallible.

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  3. Great post Brigid, but I have to disagree with both the comments in some aspects. Its true that many people may want to take your pain away and help you. Unfortunately that can sometimes come across in a painful way, and at times in a dangerous way. I have seen newbies who have had there family demand they NOT take some of the medications.... a sure road to deformity and disability. I am sure, Kara, that you mean only the very best for your sister. Brigid is talking in broad terms from seeing a lot of this on the web. I do agree on how important a support group is as well, BUT there are also people out there who will take advantage of and even scam people with RA. I have seen it personally. Support from a site is one thing, medical advice from a support site is not a good idea in any way shape or form. If you find out info researching online, TAKE IT TO YOUR doctor! Let the professionals look over what you have found and help you make a smart decision. :)

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  4. I'm just speaking from experience with my connections to others with autoimmune arthritis. I have had 2 different docs fail to listen to my complaints about reactions with medications and the fact that my disease was still active because my labs were withing normal ranges. If I hadn't been able to connect with others who were dealing with the same issues and worse due to doctor idiocy, I would have continued taking medications that were clearly doing my body no good. I can see how if someone hasn't been in that situation that my comment might be misconstrued to mean something more about going on WebMD's forums and listen to crazy people talk about eating rum-soaked raisins. In reality, I mean connecting with small groups of like-minded and bodied people who are actually educated in their illness and smart enough to know that doctors do not know everything about these diseases and fail to recognize what the different communities of patients see as trends - heredity within autoimmune arthritis diseases was once a ridiculous idea. And I'm not talking about 50 years ago - I'm talking about as long ago as 20 years when I was first ill at the age of 5. Again, I stress that doctors are just like us, they are infallible people. They are not the sole authority on issues and often, sadly, do fail to see the struggles that people with these diseases go through because they are either uneducated on certain aspects or refuse to believe patients about pain and other things. Obviously the first choice is to go to them with issues, but when they fail or refuse to listen it is important to have other places to turn to.

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  5. I completely agree the the first announcement has mixed blessings written all over it....glad to finally know but terrified of what exactly a life with RA means. Once you get your head around that it does become the journey of a lifetime but one that can be joy filled and postive!

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