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.
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.
One of the most daunting things about having RA (and related autoimmune diseases) is the cost of healthcare. In an effort to better understand this important topic, RheumatoidArthritis.net is conducting a survey. Please consider completing it. It will only take about 15 minutes of your time.
You can find it here: https://rheumatoidarthritis.net/news/take-the-cost-of-healthcare-survey/.
Thanks for checking in.
I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.
While I am on a medicine-based treatment plan, there is a great deal of evidence for and I know people who have good success with a more natural-based approach to dealing with RA and other inflammatory or autoimmune diseases.
Life Beyond Chronic Pain is a short, but to-the-point “how-to” of approaching chronic pain from a holistic standpoint. Starting with some personal information about the author, it is then broken into four major sections that represents the steps of the process: Eliminate, Detoxify, Rebuild and Maintain. (This is one step beyond the standard detoxify approach of cleansing, rebuilding and maintaining.) Each section contains a liberal amount of specific, practical information along with links to research and articles that provide the background and science behind the information.
The advice presented in Life Beyond Chronic Pain is truly a holistic approach. As an example, in the Eliminate section, people are advised not only how to eliminate toxic food but also toxic cooking techniques and to rid themselves of toxic people. Each section delves into advise on healing the mind and soul — as part of helping the whole person.
I’ve explored a number of these types of guides and there are several things I like about this one.
- First, it’s short and direct with specific information. It doesn’t spend chapters on theory or feel-good filler. It’s designed to give you what you need to address the four steps.
- The author provides enough personal information that you can relate to her struggles — and her successes with this process.
- It gives practical information on how to find additional resources, e.g., when searching for yoga videos, include the keywords “for chronic pain” to help you find exactly what you need.
- It is broad based in that it doesn’t just deal with diet and it doesn’t just deal with eliminating things from your life. It gives you a rounded look at living your life in a way that may help you with your chronic pain.
I have very little negative to say but I’d be remiss if I didn’t mention a few things.
First, if you’ve done research along these lines in the past, you may not find a lot of new information. What’s refreshing about this guide is not necessarily new information, but the way the information is structured and presented in a holistic approach — not just detoxification. It’s succinct, well presented, and easy to understand with practical guidelines.
One thing I did find missing is that even though each section gave clear instructions, there aren’t clear “success” markers to let you know when you were ready to move to the next step.
While the author has apparently had health/pain issues for most or all of her life, very little is said about the investigation into other types of treatment — the guide is very focused on this one process.
Finally, in my opinion, the guide could also do with a bibliography or a list of suggested additional reading rather than just the links and references sprinkled throughout. From a structural standpoint, even though the book is short, my particular copy (which was a review copy and not the one from Amazon) could be helped by a table of contents, links or even page numbers. Several times I wanted to go back and review a section and the only way I could was to just scroll through the guide until I found what I was looking for. This may not be the case in the Amazon Kindle edition.
Overall, if you’re interested in investigating a more holistic overview to relieving your chronic pain, and/or you want the perspective of the patient rather than the medical community, this is a good place to start. The Kindle edition, which is available through Amazon, is $2.99 and is 65 pages long.
Once you have an RA diagnosis, it changes the way you look at things. Sometimes we attribute things to RA that might just be overwork or getting older. But then again, it might not. Below is a reprise of a post I did a few years ago. I think it’s still true and hope you enjoy it. Thanks for checking in.
If I Had a Hammer
There is an old saying that goes something like, “If the only tool you have is a hammer, then every problem is a nail.”
I have a good friend who, among her other amazing qualities, is extremely knowledgeable about hormones and has published a book that empowers women going through menopause toward self evaluation and self help (What About Menopause Don’t You Understand? http://hormoneguru.com/). In the past year that I have had both my hip and my shoulder replaced, she lost her husband to colon cancer and became a breast cancer survivor, so she has had more than a crash course. It is not uncommon that our conversations drift into medical discussions. When I comment on a new symptom or ache, she offers insight into which conditions might be causing it and which hormones or natural supplements might ease the situation.
While I certainly respect her knowledge, and I love her for caring about me, I know that not all things are hormone related, just like I know that not every one of my aches and pains is related to RA.
Or are they?
That’s one of the toughest things about this condition for me to deal with. It would be easy to define myself via RA, to scrutinize each new creaking joint and ache through the lens of the disease. However, I suspect the stiff, aching neck and shoulders has more to do with working 14-hour days on a computer than a sudden progression of RA. On the other hand, I also don’t doubt that working long hours, hunched over a keyboard aggravates already inflamed tissues, perhaps giving the disease an edge it wouldn’t have if I had a different life.
I recently read another blog where the author took umbrage about people flippantly saying their aches and pains were arthritis when those of us who truly have the disease understand the difference. On the other hand, how many of us had years of unresolved aches and pains before the disease manifested itself enough to be diagnosed? Who is to say that those minor aches and pains suffered by others aren’t the harbinger of something more insidious?
But back to the point. Having a diagnosis puts a different perspective on your life. Whether you want to or not, you evaluate any change in your joints as a person with RA, which is much different from a person without it. I have to decide whether the pain in my feet today is the onset of a flare, a result of the changing weather, or perhaps wearing a different pair of shoes yesterday. People who don’t have RA don’t think about those things. They have tools other than hammers and look at life through different-colored lenses.
I personally think that if you achieve remission, the first thing is a major celebration. The question becomes what happens after that? For most RA patients, a major part of our life is spent coping with the disease and managing it – including medications, doctors’ appointments, insurance claims, uncertainty in scheduling work and family life, and just figuring out how we feel every day. Does that all go away if you go into remission?
I found some interesting and somewhat unexpected things as I researched the current thinking of treating RA patients. Read the full article at RheumatoidArthritis.net.
Britt Johnson, aka Hurt Blogger (www.thehurtblogger.com) was a key panelist on Medicine X’s panel exploring pain management. Please read the story here: http://scopeblog.stanford.edu/2016/09/18/the-opioid-crisis-medicine-x-panelists-explore-the-complexity-of-managing-chronic-pain/
Thanks to Britt for being the patient’s voice in this critical discussion!