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.
I’m embarrassed that it’s taken me this long to post about the wonderful experience afforded me by attending this year’s Joint Decisions Empowerment Summit. This is my third Summit and it brings together some of the bloggers and advocates I admire most, including:
- Wren from Rheumablog
- Angela from Inflamed: Living with Rheumatoid Arthritis
- Mariah from This Point Forward
- Cathy from The Life And Adventures of Cateepoo
- Kirsten from Not Standing Still’s Disease (and Chronic Sex)
- Molly from And Then You’re At Jax
- Kenzie from Life According to Kenz
- Rick from RADiabetes
The conference is supported by/brought together/made possible by the great folks at Joint Decisions, Creaky Joints, Janssen Biotech, and Tonic Life. This year’s theme, was “Love” as it was held in Philadelphia, the City of Brotherly Love.
One of the main things I get from the Summit is, indeed, empowerment. Having RA is exhausting. Having RA and writing about it can be overwhelming. But coming together with this great group of people, exchanging ideas, learning new things is amazingly energizing.
Part of the Summit was spent on what Joint Decisions has on tap for 2017. I applaud the work Joint Decisions does to support people who are living with RA, so if you aren’t already following Joint Decisions on Facebook you can do so here to stay in the know – and at the Summit they also announced the launch of their Instagram!
But there was a special treat for attendees this year. We were given a look behind the scenes with a BioTour of Janssen’s facilities. Learning about the complexities of researching, developing, getting approval for, then manufacturing and distributing biologics was amazing. The most incredible part was being able to spend time with Janssen scientists and executives who were very generous with their time and very open to answering our questions and discussing patient-centered concerns.
I am a strong proponent for the patient’s voice being heard throughout the medical profession. Because of initiatives like Joint Decisions and the sponsorship of Janssen, our voice is gaining volume and attention. I can’t thank you enough.
Janssen Biotech, Inc. paid for my travel expenses for the Summit. All thoughts and opinions expressed here are my own.
IMHO, patients’ voices should be a part of the medical conversation. I am delighted to see that our friends at RheumatoidArthritis.net are doing a survey of how patients might help develop clinical trials. Even if you’ve never participated or even thought about participating in a trial, I encourage you to take this quick seven-question survey. You can find it here: https://rheumatoidarthritis.net/clinical/patient-voice-clinical-trial-development/.
The results of the survey will be published on the site once the results are compiled.
Hoping you’re having a great day. Thanks for checking in.
I was supposed to have my latest Actemra infusion in a few days. I say “supposed to” because as we all know, plans tend to change when you have RA.
I first started on Actemra injections the middle of last year and switched to infusions about a year ago. In January, we maxed out the infusion dosage and added methotrexate to the mix and, for the first time for some time, I felt like something was finally working (again).
Like everyone, I love it when a treatment makes me feel better. But unlike most people, my system tends to build up a resistance to the treatment over time and it quits being effective. This has now happened to Actemra as it has eight other drugs before it.
I moved up my rheumatologist’s appointment to before the infusion because I couldn’t see undergoing that expensive treatment if it wasn’t going to help. I guess the good news (perhaps bad news?) was that my joints were visibly swollen and tender when I went in for my appointment yesterday. I hate it when I go in whining and both my joints and my labs look perfect.
I took my list of past drugs in with me to discuss. About the only thing not on the list is Rituxan, an infused biologic and my rheumatologist has been hesitant to recommend this for me. We talked through those reasons which I understood. And then we talked about Simponi Aria, which is the infused version of the injectable biologic, Simponi.
I had been on injectable Simponi in 2009, shortly after it had been introduced and I did well on it. However, the effects didn’t last the entire time between injections, so we moved on to the next drug. Since then Simponi Aria has been introduced giving additional treatment plan options. The plan is to keep me on the injected methotrexate and oral meloxicam as well. While we’re waiting for the insurance approval for Simponi Aria to percolate through, I’ll do a low dose of prednisone to help keep things calm.
I’m excited for the change because what we were doing wasn’t working. The only fly in the ointment is that I’ve “failed” on every other TNF-inhibitor I’ve been on (and I’ve been on all of them). There is discussion in the medical community and some evidence to indicate that failing on a TNF is an indicator that subsequent TNF inhibitors will also fail. That being said, every biologic drug is different. There are even differences within the same class of drug. Of all the drugs I’ve been on, I liked Simponi the most, so I am hopeful that Simponi Aria will work well for me this time.
If for some reason it doesn’t, I still have a rheumatologist that listens to me and is committed to my care, which is a major blessing in itself.
So those are the changes brewing in my life. I hope whatever changes that are in store for you bring health and happiness to you and yours. Thanks for checking in.
There are limits, even in medicine. That is, until we break through those barriers. Read more about my recent enlightened experience at: https://rheumatoidarthritis.net/living/reaching-limits/
“It’s the engine, not the caboose, that kills you,” is actually a saying that’s used in Alcoholics Anonymous as a warning against taking that first drink – which can lead to the second, and third and so on. It was also used by Jack Cush, MD, a preeminent rheumatologist in a recent article. One of the themes of the article is that in focusing on the potential side effects of treatment, we forget that the greatest health risk is the disease itself.
Read the rest of this article at: https://rheumatoidarthritis.net/living/its-the-engine-not-the-caboose-that-kills-you/
I ran across an interesting study the other day on pain in America that was reported by Rheumatology Network. While there is some very interesting data about pain in the US, a major focus of this discussion was Non-Steroidal Anti-Inflammatory Drugs, better known as NSAIDs.
NSAIDs are a major weapon in the battle against pain as they not only help relieve pain, they also relieve inflammation. As you can imagine, a lot of people with arthritis (of all kinds) take NSAIDs. They’re available as a prescription but there are also many forms available over-the-counter (OTC) including such brand names as Advil®, Aleve®, and Motrin®1. The most commonly available NSAID is aspirin. NSAIDs are in such widespread use that in 2014, 123 million prescriptions were filled for them in the United States, according to an audit from IMS Health and one-third of the general population have used over-the-counter NSAIDs.
Even at the lower-dose OTC levels, these are powerful drugs and, as such, can have powerful side effects. While the most common are associated with stomach issues, NSAIDs also carry warnings for more serious complications including heart and kidney problems.
I found a couple of very interesting things about this study:
Read the rest of this post at: https://rheumatoidarthritis.net/living/he-said-she-said-nsaid/
I want to thank RheumatoidArthritis.net for first doing the survey, then publishing the results in this great infographic concerning how we search for health information. Not surprising, nearly all of us (98%) use the internet or social media. Many of us search for people with similar conditions and experience.
It’s that time of the year when scary things happen. I’m not talking about Halloween. I’m talking about open enrollment into insurance and Medicare plans. Read more on RheumatoidArthritis.com here: https://rheumatoidarthritis.net/living/two-scary-words-open-enrollment/
Thanks for checking in.