It’s getting to be mid-September already and the weather has been cooler and less humid. However today it was a bizarrely balmy 95 degrees. What? Crazy Minnesota weather, I guess. Fall is my favorite time of year anyway, but I love it even more because the drop in temperature and humidity makes my body and aching joints feel so much better – especially my stubborn right ankle. Since returning from my trip to Europe a month ago, I admit I’ve been having trouble staying energized and motivated to get my life together and to get back on track with health stuff (diet, exercise, weight loss, doctor appointments, ankle). However, I did go on a long bike ride around Palmer Lake a couple days ago – twice around the trail! So that’s about eight miles total. My hardcore bicycling friends would probably find that distance rather wimpy, but it was the first time I ever did that, so I was pretty happy and proud. But, um, I haven’t been on my bike since then. Er. TOMORROW! I just can’t ride my bike or do any kind of exercise in 90 degree heat, and I think that’s understandable.
Speaking of tomorrow, I have two medical appointments: my therapist at the University and my much-needed Remicade infusion appointment. I hope both of them will make me feel better in some way or another. The Remicade infusion is about a month late because of my Europe trip and that I couldn’t get in right away when I made the appointment after I got back home. Surprisingly, I’m not doing too badly despite being late with the Remicade. I’m grateful to report that I’m now taking 2.5 mg of prednisone and trying to taper all the way off it. I was taking 20 mg the entire time during my trip (almost a month) and 15 mg for a couple months before that. So this is VERY GOOD news! I still would like to talk to my rheumatologist though about other treatment options. I wonder if I would do better and be able to stay off prednisone while taking one of the newer biologic drugs. Who knows – it’s such a guessing game, which is frustrating and rather frightening when I stop to think about it.
In other arthritis news, the Minnesota State Fair just recently came and went (the last day was Labor Day). My sister and I volunteered at our local Arthritis Foundation chapter’s booth in the Education Building. I’ve been volunteering at this off and on for several years now and it’s always a fun time. This year was my sister’s second time volunteering there with me, I think, and I was really appreciative of her wanting to come with me. As with any job that deals with communicating with the general public, working at the booth is a great place for people watching and meeting all types of people. I try not to laugh sometimes when people come up to us and ask health questions, wanting some kind of diagnosis. Look at my finger, does this look like arthritis? Er, yes, well thank you for showing me your finger, but I think you should ask your doctor that question. I completely understand people wanting answers though, especially when they don’t feel well and are in pain. But sometimes the questions people would ask us over the years were so ridiculous. Many people just wanted to talk to someone else about having the disease, which only enforces my view of arthritis being a lonely, emotionally isolating disease as well as a serious physical one. This year I talked at length with a friendly old man who told me all about his knee replacement surgeries and how he can’t eat gluten anymore and now shops at a co-op and is learning how to cook since his wife recently passed away and I can’t remember what else. He was a lovely, sweet guy to talk to but I also felt kind of sad, because I think despite his health problems, he was mostly just lonely for someone to talk to about them. But I am (almost) always happy to listen and I feel great empathy for people who need to talk to others who also have arthritis. I, too, often feel alone and isolated and like I live in this weird bubble-world where nobody else can understand what I’m going through on a daily basis. It’s important to have others you can talk to about it, and I went too many years after I was first diagnosed not having anyone to talk to other than my cold, emotionless doctor. I’m so thankful to have made new friends around my own age over the last few years who also have RA. And I’m happy I decided to change doctors five years ago.
But anyway, volunteering at the State Fair was really fun and I’m glad I did it again this year. Despite my diet, I had to eat some gross/delicious mini donuts as well as one of my favorite foods at the Fair – roasted corn on the cob! I think I did a pretty good job not giving in to temptation and scarfing down every disgusting fried food in sight (and it was available everywhere you looked).