It seems incredible that it’s been a year since I left full-time employment (thank you, RA). People often ask me what I’ve been up to in the past year. Honestly, I’ve wondered myself, so I’ve done an accounting. Even though I haven’t completely lived up to my goals of finishing my second novel, learning to Tweet, and learning Spanish, it appears that I’ve been pretty busy:
- Medical appointments. I’ve had 96 medical or dental appointments in the last year. Some of these were simply things like labs that don’t count for much, but there was also Achilles tendon surgery. This just covers the actual “have a appointment” times. It doesn’t cover all the times filling prescriptions, managing medications, taking injections at home, and dealing with insurance issues. It’s amazing how much time a chronic disease can steal from your life.
- Books. According to my Amazon account, I have read 61 books in the past year. (This is what I do when I am in a medical waiting room so I had plenty of time!). One of my goals was to expand my narrow reading habits of popular fiction and, taking cues from the New York Time best-sellers list, I’ve discovered some amazing authors.
- Advocacy. I’ve been a bit more active this year, with 93 posts here, on RheumatoidArthritis.net, and Mango Health. Thanks to the generosity of Janssen Biotech who sponsored my travel expenses, I was able to meet up with other health advocates at HealtheVoices in Chicago and Joint Decisions in Philadelphia. I’ve signed up for the 50statenetwork.com to get more involved in 2017.
- Travel. This has been a busy travel year for us. Since I “retired” last year, I’ve been to Las Vegas three times, Austin (TX), the UK (London, Edinburgh, Glasgow, and Norwich — to meet the great Penguin), New York, New Orleans, Arkansas, Chicago, and Philadelphia. Between now and the end of the year, we have upcoming trips to Spain and back to New Orleans and Las Vegas. We actually canceled trips to Jamaica, Miami, and a second trip to New Orleans.
- Weight. One of my main goals was to improve my health and central to that goal was losing some weight. I’ve lost 25 pounds this year. Actually I’ve lost more than that because prednisone and Lyrica keep putting the pounds back on and I have to lose them all over again.
- Jam. I’ve made about 32 pints of homemade jam. After the first batch, I learned about making sugar-free jam, which has helped with the weight-loss goals above.
- Spanish. I actually just started learning some Spanish via the Duolingo app on my phone, but I am at 8% fluent — which is a lot better than I used to be. I am embarrassed at having spent so much of my life in the Southwest and to be as “unfluent” as I am. (Right now I can say such useful phrases as “My duck eats bread” which I am sure will be very handy for my upcoming trip to Spain.)
- Disability. I fought through a disability claim as well as filing for disability via Social Security this year. It’s hard to overstate how time-consuming and taxing that was dealing with all the red tape and frustration. But it worked out in the end. I think that once RA becomes a more recognized disease, people who can no longer work due to their health will have a better opportunity of receiving the benefits available to them.
- RA treatments. I was on Actemra injections. Then I went on Actemra infusions. Then we increased the Actemra infusion dosage and added methotrexate. Then we added Mobic/meloxicam. Since none of that seems to be working, now we’re moving to Simponi Aria with a bit of prednisone to tide me over until that happens. Sigh.
- Tweets and novels. Okay, so I’ve sort of dipped my little toe into the Twitter pool, but I’m a long way of saying that “I Tweet.” But I am better than I was. However, the second book is still sitting on the virtual shelf continuing to gather dust. I need a goal for 2017, so perhaps I’ll roll that one forward. If you haven’t already read my award-winning first book which is basically a trashy paperback novel with no socially redeeming qualities whatsoever, it’s not too late to order it for those questionable people on your Christmas list here. You can apparently buy it for $2.99 on the Kindle version.
So it’s been a busy year. I hope that your year has been good to you and that the upcoming holiday season will be filled with peace, love, and health. Thanks for checking in.