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.
I’ve often wished for a test that could help predict if a specific drug or treatment plan was going to be successful. I was encouraged recently when I read that certain biomarkers could be used to help predict if a popular biologic, rituximab (Rituxan) would be successful.
Read more about what I learned, including a link to the study at RheumatoidArthrtis.net, here.
One of the things I’ve enjoyed most the last few years is the connection I’ve made with other people in the RA community. Not only do I have the privilege of having a number of people who follow my blog (thank you!), I’ve been able to make the acquaintance (either virtually or physically or both) with other bloggers.
One of my favorite cohorts is Pollyanna Penguin who lives in the UK and has an expectedly and wonderfully British perspective on life, RA and the health system in England. In her post today she provides some excellent, universal advice for people who have been diagnosed with RA. Among her tips (which includes the admonition of “DON’T PANIC” ala Hitchhiker’s Guide to the Galaxy) is the important reminder that everyone’s journey is different. Just because one person’s path/treatment plan/experience includes certain challenges, doesn’t mean that yours will.
I am somewhat of a poster child for some worst-case scenarios due to the many surgeries I’ve had as a result of RA. But trust me, I know far more people with RA who have successful, productive non-eventful lives with successful treatment plans than I do who have had even one joint replacement. And my surgeries have greatly increased the quality of my life, relieving pain and allowing me to continue to lead a full and active life.
I think that part of the trap (if that’s the right word) that we bloggers (and other journalists) fall into, is that we tend to write about dealing with the challenges of a situation — in this case RA. It would be a pretty boring post to write that I got up, went to work, took a walk during lunch, met my husband for dinner after work and then got a good night’s sleep. (Repeat as necessary.) But that’s exactly what my routine was for years both before and after my diagnosis. Treatment plans and surgeries have been (for me) just sidebars in an otherwise pretty busy life. However, reading through my blog that documents all these experiences could be a pretty scary experience.
As bloggers, one of our goals is to help our readers deal with the challenges we’ve faced by relaying our personal experiences — so our blogs tend to focus on those events, perhaps at the expense of what “normal” means on a day-to-day basis.
But to underscore Polly’s invaluable point, everyone’s experience is different. RA affects each of us differently, we all react to medications and treatment plans differently and we all have different beliefs and fears. If I, as a blogger diagnosed with RA, can help you by sharing my experiences (including the good stuff as well as the scary), then my time is well spent.
I wish you the best on your journey with RA. Thanks for checking in.
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!
I have a love/hate relationship with prednisone. If you have RA or similar inflammatory condition, you will very probably become acquainted with the drug. Read more about it here: https://rheumatoidarthritis.net/living/youve-got-to-lovehate-prednisone/