A Tale of Advice

RA Blog Week; Day #5: WILDCARD  #1- Advice column -What is the best advice you’ve ever gotten, or advice you can give about how to live well with chronic disease and pain.



Today, I am going to share some of the advice that I have received. I have lived with RA for over twenty-five years, so I pretty much have heard it all. I am however, going to concentrate and share with you, something practical. I have always believed, that experience is our best teacher, as well as watching those who live by example. My late mother was a great one, in that regard.

I had the wonderful pleasure of meeting and working with one of the best patient advocates, who happens to also be my friend, Seth Ginsberg, who is the Co-founder and President of CreakyJoints.

It was in April of 2012, when Seth came to North Dakota, and helped me, with my work advocacy day.
We had a chance to spend some great quality time together. We talked about how it felt good to help others. I have since used his quote many times. "Helping others, really does help us feel better."

I don't know if you have ever had the pleasure of working with Seth, but he is one energized person, and you cannot help, but let that kind of energy flow to you. I even told him, that I felt so much different that day, as we had a lot to accomplish. It turned out to be a great day.

It was to commemorate my taking a biologic, my 11th Anniversary of taking Enbrel. I even got to pick the date, when he would come and work with me. Of course, it was April 20th, because that was also the same date, that I had my first injection of Enbrel in 2001.

It was a day filled with meetings, a local TV interview with NBC North Dakota News, and also a local newspaper interview, with the Bismarck Tribune.

We discussed that by helping others, we are really helping ourselves, something I had alluded to, up above. It can help to get our minds off of the pain, or any chronic illness, that we may be dealing with.

I realized that living with RA was going to be for life. It took me a long time to reach that point of acceptance. It did not happen overnight. As I said before, seeing others out there and the wonderful work that they are doing, spoke volumes.

Yes, I was told if I took this joint supplement, that all of my pain would go away. That was not the case. I decided that after working with Seth, that this was something that I wanted to dedicate my life to, and that was becoming a true patient advocate.

So my best advice that I ever received was not really through words, but rather through action. That my friends, is powerful!

I want to share a photo that was taken right before my local TV interview, with NBC ND News. It has become one of my favorites and a great memory of the day, I truly started my path to advocacy.


Trevor & Brenda

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