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Thursday, May 1, 2014

A case of mistaken identity!

     I recently was looking over some previous blog posts and in so doing I discovered that one of the frequent issues we face with RA is what I call "reoccurring cases of mistaken identity".   Over the course of nearly 20 years I have had RA I realize that over and over I have, on many occasions, been either misdiagnosed or an issue has been falsely attributed to RA or it has been ignored.  
     For instance I noticed that I began posting about stomach issues back in 2011, three full years ago.  During that time the number of tests, suggested solutions, diagnoses, potential causes is mind blowing!  In one post I wrote in fairly certain terms, that the problem was being attributed to the many medications we take as part of our treatment plan and in my physician's opinion that was likely the culprit.  The irony of that was that the solutions only served to mask the real problem which came back with a vengeance as the years passed until finally this year we did the right test and the real issue was discovered and the surgery successfully treated it.
     One of the issues with a chronic disease is that often symptoms are masked or otherwise overlooked  because we are so wrapped up in the treatment of RA that we forget that other health issues, unrelated to RA, can happen.  That is exactly what happened with me.  I totally believed that my stomach issues were directly related to RA but they were not and the most distressing part is that it took nearly 3 years to figure that out!  Three long, uncomfortable, difficult years of feeling sick and not understanding why. 
     Why could no one figure this out?  I really think we need to be vigilant in making sure that if symptoms continue or worsen we advocate for a fresh look, more testing, or even a new doctor.  I wish I had not let this go for so long.  I do know why it happened though.  When you have a disease like RA that has so many potential side issues and accompanying secondary health problems, it is perfectly logical to attribute concerns to it.  And I don't blame my rheumatologist because he is trained and specializes in RA and so I would expect him to see that as primary cause and to make matters worse it sometimes is!
    If you stop and think about it, it makes perfect sense to wrap all of our health concerns into the neat little package of RA.  I even think we gravitate to it as do our health care providers since it IS sometimes the case and surely makes our lives easier to tie it all up in a bow and label it RA related.  
     Let's be honest, there are times when the pain, the discomfort, the fatigue and everything else is just too much to bear and we look for an easy explanation just to ease our tired minds.  When I was going through the stomach issues, I researched and researched but without the benefit of an objective professional I think I was just to immersed in the RA to see beyond it and so I would come full circle back to RA in some way or another.
     It took me reaching some level of critical mass, illness wise, to realize this could not possibly be a part of my RA. Even then, I was not certain they were not related!  Which just shows you how immersed we are in dealing with a chronic disease like RA.  I will be forever grateful to my primary care physician for seeing beyond the RA and doing the one last test (after probably 2 dozen were done over the three year period - some twice) that revealed the real issue. That test completely peeled back all the misconceptions for me and was a real moment of realization.
     That AHA moment of clarity has remained with me and will hopefully stick around so that in the future I will be able to see beyond the RA and not fall victim to that same case of "mistaken identity" again!  Now I have a new tool to add to my RA management toolbox - being able to see past the RA - and I know it will serve me well in future years.


Anonymous said...

Dear Nan:

My name is Kathleen Engel and I am an editor at Health Monitor Network in Montvale, NJ. My company publishes guides on various health conditions that are distributed free to patients through doctors’ offices. (You can see our site at

Right now I am working on an article for the next issue of our Guide to RA. (If you'll send me an email address, I'd be happy to send you a PDF of an older issue so you can see what the guide looks like.) The article is a roundup of tips from a number of contributors that I hope will be helpful for our readers with RA (who will pick up this guide in their rheumatologist’s office). The idea is roughly “Tips to help you cope with your RA around the clock.”

Are you able to contribute a tip or two, Nan? I would love to run your quote along with your photo. I am looking for self-care tips that you do that I can tag to some point of the day: Upon waking up, breakfast, mid-morning, Noon/lunch, afternoon, dinner, evening, bedtime, while sleeping.

Tips could be anything interesting that you do that helps with your RA, from meal prep tips, to a smoothie you always make at 10 AM, to meditation, exercise, a special pillow that helps you sleep, a stretching routine, warm bath with Dead Sea salts or whatever helps YOU. Also, tips can deal with anything that is a part of RA, not just the pain, but fatigue and brain fog, too. (I’d just ask you to tell me why you’re doing it. So, for example, the smoothie—maybe you’ve found it quells your mid-morning cravings, which is helpful for keeping your weight down.)

The only caution: I can’t include anything about medication.

Thanks, Nan. I look forward to hearing from you and do hope to include your comments. Once the guide is printed, I’m happy to send you a PDF and, if you’ll send me your mailing address, hard copies. If we put it on our web site, I can send you a link you can put on your blog, if you like.

Any questions, please let me know!

Kathleen Engel
Editor, Health Monitor Network

PS - Great blog!

Nan said...

Kathleen: I am happy to help. just send me your email address