If some days are better than others, that means that some days are also worse than others. It seems like I’ve had a lot of those in my life lately.
I think it’s easier to tell that a new treatment isn’t working that being able to discern when an existing treatment quits working. For me, it’s a gradual process. Eventually I start to wonder if my RA is getting worse. Then I realize that I’m not getting the “feel better” feeling that often comes from the latest injection/infusion. Finally I get to the point where I don’t feel like I’m on anything at all.
All this takes weeks, if not months, which is a long period of time to feel crappy. New biologic treatments can take up to three months to become effective, so by the time you finally switch, you still have another 90 days of not feeling as good as you might.
Early last November my rheumatologist and I agreed to the switch to Simponi Aria. It wasn’t until several weeks later in December (due to some screw ups in getting the insurance approvals) that I got my first loading infusion which was supposed to be followed in four weeks by a second loading dose. Due to the New Year’s holidays and further screw-ups/confusion, I was a week late getting the second loading dose.
But thank goodness for prednisone. My husband took a Thanksgiving trip to Barcelona and Madrid, Spain and even though I had some tough days, I managed the 10-day trip fairly well. We’ve come to expect there will be days when I lay around the hotel and my husband gets “let off the leash” to go exploring on his own with his camera.
The good news is, I think I’m feeling better. I don’t know if it’s the Simponi Aria kicking in or whether it’s because I’m actually keeping my New Year’s resolution to get some exercise most days (right now it’s walking 30 minutes at least 4X a week). While I still have days (and especially nights) that are challenging, I have noticed more days where it feels really good to get out and walk.
I used to tell people there were some days I didn’t feel like getting out of the house. Then there were the days I didn’t feel like getting out of bed. Fortunately, those days seem to be getting fewer and further between.
I hope your day is good and that you’re feeling well. Thanks for checking in.
Having RA not only means adding a number of new terms to your vocabulary, it means learning how to effectively convey to those around you how you feel and what you need. Read my thoughts on the subject here: https://rheumatoidarthritis.net/living/learning-to-speak/
I’m more of a continuous improvement kind of girl rather than new year’s resolutions, but I found this list of 13 Things You Should Give Up to be Successful fascinating. https://medium.com/personal-growth/13-things-you-need-to-give-up-if-you-want-to-be-successful-44b5b9b06a26#.oma6euf8b I’ve often found that subtracting things (simplifying) often yields greater/better results than adding. Some of these I already embrace, some I need to do better on, and some I need to think about.
Somehow I’m always surprised when the New Year arrives. This is a bit strange as it shows up like clockwork on January 1. It’s not like it can sneak up on me.
I look back at 2016 and, if you can subtract RA out of the equation (wouldn’t that be nice?), it was a pretty good year. It was the first year since I was a teenager that I haven’t worked full time and I filled it with travel and books and learning new things. (More about that in this earlier post: here.)
But after so many years of a demanding career, it’s hard for me to feel like I actually accomplished anything. For a results-oriented, bottom-line, micro-managing kind of girl, that’s a strange and not altogether comfortable feeling.
I’m used to looking ahead at my calendar and seeing it filled with projects and deadlines and meetings (and paychecks!). 2017 looks like wide swaths of desert punctuated with the occasional oasis of a trip.
I have no doubt those calendar pages will get filled. For one thing, I have committed to increasing my advocacy. With all the changes coming to health care — from new treatments to new health legislation, it will be a very interesting 2017.
And while I’ve given up making New Year’s resolutions, I want to keep up the progress I made on improving my health in 2016. There are more pounds to shed; more miles to trek.
I know there will be challenges in the new year. My health insurance situation is going to change mid-year and that’s worrisome. I am almost out of options on biologics. I really expect this one to fail. I just started on Simponi Aria — the infused version of the injectable Simponi which I was on several years ago. While I loved the medication when I was on it before, it eventually quit working for me, so my hopes for the infused version aren’t great. I may be looking at a couple of surgeries — never fun, but if they make things better, it will be worth it.
Do I sound bleak? I’m really not. The unknown has always enthralled me and while my calendar pages may currently be blank, it’s just because I don’t know what’s going to fill them yet. And while that may temper my anticipation, it whets my imagination (which can be a dangerous and wonderful thing).
I do know that there will be many changes in 2017. I hope that those changes are good for all of us and that you and yours enjoy a year of both health and happiness.
Thanks for checking in.
As part of the results from the Rheumatoid Arthritis in America 2016 Survey, our friends at RheumatoidArthritis.net have compiled some (IMHO) thought-provoking statistics into the following infographic. Additional information is included in the news release issued today (in which I along with fellow contributor, Mariah Z. are quoted): https://www.eurekalert.org/pub_releases/2016-12/hu-isi121316.php
Thanks to the great folks at RheumatoidArthritis.net and everyone a Health Union for the great work they do for those of us with chronic diseases.
It’s a bit strange, I guess, but I’m always truly surprised when I find out someone reads or follows this blog. You can imagine my amazement, then, when the blog actually gets recognized. Healthline (www.healthline.com) has once again named Carla’s Corner, along with some of my most favorite other blogs, as one of the Best Rheumatoid Arthritis Blogs of 2016. I am indeed honored. Check out the entire list here:
As we enter the season of holiday craziness, I have reprised my Twelve Days of RA. Wishing you all the best for whatever holidays you celebrate this time of year (or avoid as I do). May the new year bring all of us health and happiness.
On the twelfth day of Christmas, RA brought to me:
12 joints a-flaring,
11 scripts a-filling,
10 toes a-throbbing,
9 copays pending,
8 workdays missing,
7 doctors billing,
6 X-rays to be taken,
5 hours sleep!
4 side effects,
3 new tests,
2 swollen knees,
And a new D-M-A-R-D.
“And God bless us, every one.” Tim Cratchit, A Christmas Carol by Charles Dickens
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.