Can you tell us a bit about your journey with RA – going back to how it all started and what your experience was getting diagnosed?
I was diagnosed with RA in 2000, and there were really two significant events. First, my son bought a brand new, beautiful car, a TransAm, and he was so proud of it. Naturally, he wanted to take the family for a ride, but I couldn’t get in the thing! There was no physical way I could get in it, so I missed out on the ride.
Then a few months later my younger son was looking at colleges and we went to my alma mater, the University of Indiana, and I couldn’t do the tour. When I saw my endocrinologist a few months later I told him what was going on and they did some tests and he referred me to a Rheumatologist. The Rheumatologist told me that I have RA, and that actually, I have it pretty bad, and I’m in bad shape!
So I was really fortunate in January of 2001 to start a biologic, which I’ve been on one ever since. Sometimes it’s been better and sometimes it’s been worse, but mostly I get along okay with it.
I’ve tried 6 biologics but I’ve always been lucky because they keep coming out with new medications. When I was diagnosed, there were only 2 biologics on the market and the doctor said he was going to start me with one. But he reminded me that there is another one, and the good news is, there are a lot more coming. That’s a huge deal because your body can build a tolerance to the medication, and it eventually stops working. I’ve been so lucky that whenever a medication stops working for me, something else has been on the market. For instance, my first biologic worked really well for 5 years and then it completely stopped working. Then I had a rapid series that really didn’t work. The current medication I’m on though, I’ve been on for 4 years, so we’ll see. That’s almost as long as I was on the first one! You know, our systems are so unique you can’t predict what will work and for how long, you just have to give them a fair shot.
We have been, my doctor and I, very patient with the medications, giving them as complete a chance as possible to work or not work. That’s important. We do talk about medications every time I see him, even if one is not necessary – we always talk about where we’ve been and where we’re going. These are big dollar drugs and we don’t want to burn one too soon or stay too long.
What motivated you to start blogging about your health and become an advocate?
Well, it started after I stopped working in 2008. I had to quit working and I was really not very happy about it, so I went back to college and got a doctoral degree in education! That kept me busy until I graduated at the end of 2012 and then, again, I was looking for something else to do and really not very happy. My wife said I couldn’t do more school so I figured this would help me improve my writing skills, and why not?
I guess it really started when I found a community with diabetes. I’ve had Type 1 diabetes for 30 years now, and they had a platform that would allow me to post blogs. True Diabetes, that’s where I started. Some of what I wrote was good and some of it was terrible and that was okay.
I think I wrote 200 blogs that first year and another 100 the second year and that year I started my own site, RA Diabetes. I’ve slowed down considerably. But yeah, I have RA and Diabetes and the logo works cause I’m RAD- I like to say on twitter let’s get RAD.
Then the next big development for me was RA blog week. Blog weeks actually are a thing that started in the knitting community, and one of my friends who is a blogger is a member of that community started it in the diabetes community and she now has 100 bloggers a year that participate. It’s fun, it’s something cool to do, so when I opened my own site I thought you know, no one’s doing RA blog week so I’ll carry it over to the RA blogging community! I get between 20-30 bloggers to participate. But RA is a different kind of disease than diabetes and just in total there are more people with diabetes then RA, so it’s its own niche.
When it comes to managing RA symptoms and flare-ups, are there any strategies or resources that have been game changers for you?
Exercise is good for arthritis of any kind. I’ve lost a considerable amount of weight over the years to make my body leaner – I’m not there yet, but I’m doing better. Of course emotional, mental support is always very important, and getting involved in these communities has been huge. It’s important to make friends, to contribute – for instance in October I’ll be riding my bicycle in tour de care at the Annapolis motor speedway not many laps but a few. I participate with the arthritis association it gives me a sense of purpose and I feel better with a sense of purpose.
The other thing is just anchoring on my motivation, my family. My wife, she gives me the stability that makes my life possible, and then, of course, my two sons and three grandchildren.
You know, my Mom was a frequent research subject for diabetes back in the 60s and 70s. She was a control subject in one of the first pump studies, and now I wear this tiny pump on my belt. I like knowing that her contribution to science is part of the reason I enjoy the benefit of being alive.
God forbid either one of our children or grandchildren every gets diabetes or arthritis, but if they do they’ll know grandpa didn’t sit back and wait for advancements, he contributed, just the way I’m able to say about my Mom. And we’re very close to a cure with diabetes, we are going to beat it, and the day we beat it, it’ll be for my grandchildren or their children. I don’t know any other way to express a life well lived then to say that you gave your children/child a better life than you had!