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!
Thought I’d provide some updates with what’s going on in my life at the moment:
- Somehow it completely slipped by me that I’ve been nominated by WEGO Health for “Best in Show.” (Darn that overactive spam filter!) Apparently it’s something that you can vote on, but there some other amazing advocates that have been nominated. For truly inspirational stories and to vote for someone really deserving, see the list of nominees here: https://awards.wegohealth.com/nominees. Thank you WEGO!
- I’m getting pretty discouraged. My current Actemra infusions don’t seem to be working well any more. My rheumatologist also cut back my methotrexate dosage in an effort to overcome some of the fatigue I’ve been having. I’m still fatigued but I am really missing the extra MTX. So overall feeling crappy. As I told a friend: there used to be days when I didn’t get out of the house. Now there are days when I don’t get out of bed.
- My refrigerator has been out of order for over a month. We’re subsisting on an “Plan B” apartment-size fridge in our garage. I’ve had three technicians visit. Still not working. Finally received a part today that will hopefully solve the problem. Now all I need is the technician to come install it. As it stands, they’re not scheduled back until next week but I am hopeful I can get someone to show before then. Sigh. It’s not only difficult to cook, both my husband and I have some very expensive medicine that needs to be refrigerated. If the “stunt fridge” fails, then we could be out a couple of thousand dollars. At least the fridge repairs are covered by warranty.
- Next week is my final check up on my gastrocnemius contracture surgery as well my one-year (and final) check-up on my second spinal fusion surgery. It will be nice to get both of those items checked off. I’ve recovered remarkably well from the gastrocnemius contracture surgery, although I’ve been having a lot of pain inside the ankle joint. I suspect it’s because the ankle is now moving differently/more freely than it was, but I’m planning on asking the surgeon to take an X-ray while I’m there just to make sure something hasn’t gone wonky. (“Wonky” is a highly technical medical term that many of you will recognize. Lots of people with RA have wonky bits.)
Other than that, life goes on here in Dallas. It looks like our highs will finally drop into the 80’s next week so I am hopeful that we will finally start getting some cooler fall weather.
I hope that whatever’s going on in your life brings a smile to your face. Thanks for checking in.
My claim for Social Security disability benefits was recently approved. I learned a lot about the process and share that information here: https://rheumatoidarthritis.net/living/learned-social-security-disability/
Thanks for checking in.
Lara Spencer is a well-known television personality. Among other things, she covers pop news and entertainment for the highly rated Good Morning America show and hosts the reality show Flea Market Flip.
An athletically trim, bubbly person, last Thursday Lara announced on national television that she would be undergoing hip replacement surgery at the young age of 47. She had the surgery over the weekend and I hope that her procedure and recovery are as wildly successful as mine were. (The first words out of my mouth after my hip replacement surgery were, “This feels so much better.”)
Near the end of the seven-minute segment (about minute 6 — see below), Lara spent some time talking about how all-consuming chronic pain can be. How pain can take over your life and how it affects you mentally, physically, and emotionally.
Thank you, @LaraSpencer.
It seems that the only time we hear about famous people and pain is when they’ve checked into a rehab facility because they’ve abused opioid drugs. Having a high-profile individual like Lara Spencer talking about the realities of chronic pain in such a public forum is amazing. It brings the incredible suffering caused by chronic pain to the forefront and makes it harder for legislators to undermine its devastating effects. (Thereby passing legislation that denies much-needed medication to those that desperately need it.)
The thing about famous people is that they are, in fact, people. Statistically, they should suffer chronic pain just like the rest of us. I understand that they work to have a “perfect” persona. But if we could get more brave, famous people like Lara Spencer to speak about chronic pain, perhaps we could reverse the travesty of the current environment that makes ongoing pain medication an endangered species.
Thank you, Lara Spencer. Sincerest wishes for a full recovery from someone who has been through it.
Thanks for checking in.
The segment can also be seen here.