I’m Not an RA Newbie

Having a diagnosis of rheumatoid arthritis for 11 years now makes me a little impatient with on-call doctors. They ask questions such as, “Are you sure it’s RA related?” or “Could it be an injury?” and hold off giving you what you know you need.  Honestly, I find it irritating.

For a good two weeks or so, I’ve had a constant pain in my hips.  I get it off and on and as my beautiful teenage daughter reminded when I had a meltdown on Saturday, “It always goes away Mom.”  However, I haven’t been able to sleep well or sit comfortably and I think I had just had all that I could handle. I woke up early Saturday morning knowing that I needed something for the pain.

Calling for something to control my pain levels in VERY RARE for me. In fact, I can only remember one other time I did it.  I just deal with the pain.  So when I made the call, I felt vulnerable.  When I am in a bad place with pain, I don’t like to discuss it.  I ended up crying as I told the doctor my symptoms and then found myself getting irritated that she had to go through a million questions. (I know she doesn’t know me and it is protocol, but by the time I called, I just wanted her to get me what I wanted.)  The on-call rheumy ended up recommending that I take four Advil every eight hours rather than two every four hours and calling back in 2-3 days if not better. I hung up, cried, and in my vulnerable state felt angry. “Obviously, this gal doesn’t know what RA pain can feel like.”  But, I followed her directions.  However, within two hours, I knew I wasn’t going to feel any better. Turns out taking four Advil doesn’t do much more than taking two. So, I called back and asked for predisone after frantically searching through all my cupboards for a backup bottle and not finding it. I don’t know about the rest of you, but I have a hard time asking for medications, especially when I am in the middle of lots of pain. With more questions, she finally said she would call the prednsione in for me but it would be a while.

A day later, I’m feeling slightly better. Well, at least I have a grasp on my emotions again anyhow. The pain will go away in time. That’s one thing I have come to rely on with rheumatoid arthritis. The pain comes and the pain goes. My irritation at myself and the on-call is still there though. I’m frustrated with myself for not keeping the necessary medications on hand for situations like this. It’s really my own fault. When I think of the on-call rheumy asking me basic questions, I still want to roll my eyes. I’m not a newbie at this. After eleven years, I think it is safe to say I know what I need. I guess what also burns me up is that I am not a patient that will ask for extra meds so when I do, it’s bad.  It’s too bad we can’t earn some type of badge in our records after we have been dealing with rheumatoid arthritis symptoms long enough that we can skip the initial questions and the rheumy takes our opinion into account from the start.

 

4 thoughts on “I’m Not an RA Newbie

  1. I think that's an excellent idea! There should be a space at the top of the chart for a notation on length of dealing with the disease your and level of engage/empowered/awareness (in other words, as is someone who asks for medications all the time, or only when absolutely necessary).

    So many thoughts that sparked by this. Although I agree with you that it's a really good idea to always have a backup prescription of the good painkillers and/or a bit of prednisone, I don't think you can blame yourself for it. When you are generally doing well and have done well for a really long time, it's okay to assume that you will continue to do so. Also: be thankful for children who remember your patterns.

    Have you managed to get a hold of your own rheumatologist on this?

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  2. Cathy, so many of our doctors anymore seem reluctant to prescribe pain killers to those of use who have chronic pain disorders. Like you, I do not complain much, I deal with it, I cry sometimes, but my family can look at me and tell if I am hurting, no matter how much I smile. Sadly, due to so many drug abusers, those of us that need something are frowned upon. I can't do the Advil without getting sick to my stomach. I am so glad you stood your ground and called back! I am sorry you had to go through this!

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  3. You're right, there are a lot of people who have abused the system and docs need to be careful. However, when I'm in lots of pain, I just want to throw a little tandem and for them to give me what I need. 😫.

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