Managing Unpredictability
What is the best tip you've discovered to manage the unpredictability RA brings? (Daniel shares his strategies here: https://rheumatoidarthritis.net/?p=40430).
Maybe it will sound cheesy, but I am learning to take one thing a time, and for an adult with ADHD it is like asking the impossible. I am learning to accept my vulnerability every time the unpredictabilities of RA knock at the door of my life or at my knees/hips/elbow/jaw 😀
Just today I was almost knocked down by one of these unpredictabilities when my gastroenterologist (one of the best you can get in Midwest) told in my face that he does not believe it is my RA that gives me trouble with my joints, and that probably I don't have RA at all but just elevated ferritin. I was in shock because my RA precedes of few years my last 3 months of elevated ferritin. I did not say anything anymore, because he is still the luminary of gastroenterology and I am just an engineer that does not know anything about RA.
Sorry for venting off.
He told me that a person with true RA cannot be full of joy and life! It was worthless to mention that the night before I could slept for no more than an hour because my pain in the knees and in the hips. I could not speak to him more because my jaw started to painfully remind me that it was time to let it go.
Nan Hart your article touched a cord that resonate with me on so many levels.
I look forward for your next article.
Giovanni Vecchio
Hi Giovanni (
). First, let me say that it is great that you have learned to roll with the ups and downs that living with chronic condition like RA can bring. Second, I'm more than a little surprised that your gastroenterologist would say that elevated ferritin may mean that you do not have RA, especially since it is considered to be a potential indicator and symptom for RA (please see this article from the Mayo Clinic: https://www.mayoclinic.org/tests-procedures/ferritin-test/about/pac-20384928). This particularly jumps out since you noted that the RA diagnosis preceded by a few years. I'm sure your rheumatologist used numerous factors to come to a diagnosis (physical exam of joints, x-rays, blood work, etc...). I'm not saying that misdiagnoses can't and don't occur, but I agree with that a conversation with your rheumatologist is very much in order before any change is accepted. Wishing you the best and please feel free, if you like, to keep us posted - I, for one, would be very interested in what your rheumatologist has to say. Richard (RheumatoidArthritis.net Team)
When something like that happens, I get out my telephone and give the nonexpert doctor the name of the specialist and ask them to please call immediately. Sometimes I even start dialing so they can tell my specialist the news that I am cured.
I have yet to have a doctor who will make that call.
Love that tactic,
! - Lori (Team Member)
It only takes one of those. My endo used to say hey your cholesterol looks great you should get rid of some of these medications. I pulled out my telephone and started dialing. I told him that he could deliver the good news to my cardiologist. I thought he was going to slap it out of my hand.
Love your sassiness!
I have learned not to mention my rheumatoid arthritis. For mel, I tell others I'm tired or I'm not up to going somewhere. This way I don't get oddball questions about my rheumatoid arthritis. Especially since so many people don't understand what RA is about. Replying this way takes pressure off of me, making it easier to manage my rheumatoid arthritis. m
Appreciate you sharing so honestly with us. This is a strategy many here use. Being very particular with who you choose to discuss your personal health struggles is smart when you don't feel up to it. I imagine it can help cut down on the unsolicited advice from well-meaning people. Thank you for being part of our community. best, Kelly, Rheumatoidarthritis.net Team Member
