After years of dealing with punishing deadlines, I’ve finally found the rewards in setting and working toward goals instead. Just setting them a bit higher than what I normally achieve has paid big dividends in how I feel.
Read the entire article here: https://rheumatoidarthritis.net/living/finally-embracing-goals/
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.
2016 was a momentous year for the biosimilar market as the first of these drugs were approved for use in the US. Of the four biosimilars introduced, it’s notable that three of them are RA medications. Inflectra, a Remicade biosimilar, was approved in April; Erelzi, an Enbrel biosimilar was approved in August; and Amjevita, a Humira biosimilar, was approved in September. The fourth biosimilar, Zarxio, is prescribed for cancer patients.
It’s important to understand that these drugs are not identical copies of the original like a manufactured generic drug is. Most medications are chemical compounds that are created through a specific process. Aspirin is a great example and the aspirin compound created in a high school chemistry class is identical in structure to the aspirin you can buy off the shelf at your local store.
Biologic drugs, however, are animal-based proteins that are grown in a lab. This applies to both the original biologic as well as the “similar” drug. While similar, just as two fingerprints are similar, the biosimilar can never be an exact match to the original. To illustrate the complexity, if aspirin (which has about 20 molecules) is a one-room log cabin, then a biologic is the Empire State Building.
Read the full story here: https://rheumatoidarthritis.net/living/biosimilars-not-generics/
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.
RA gives us a lot of things – aches, pains, medical bills and aggravation. But it also affords us the ability to use our creativity and ingenuity to overcome obstacles. I share some of my personal life hacks and tips on RheumatoidArthritis.net here:
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: