Managing the Mental and Emotional Challenges of Life with RA

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My friends at Creaky Joints and Joint Decisions are holding one of their great Twitter chats featuring my personal (super) hero, Rheumatoid Arthritis Guy and Arthritis Introspective on Tuesday evening, August 25. The topic is Managing the Mental and Emotional Challenges of Life with RA. Please join in!

Twitter Chat 2 Promotional Graphic

Commenting on comments


One of the best things about this blogs is the input and support I’ve received over the years via comments and I welcome hearing from those who read the blog.

But I would like to point out that this space is a personal blog and, not to put too fine a point on it, it’s MY personal blog. It’s not an open forum where anyone gets to publish anything they want. While I generally just “approve” comments I receive, I have drawn the line on comments that want to use this space as a personal platform for politics, religion, and biased or bullying remarks. I have strong personal opinions on these topics (and others) but I don’t post them here and I don’t approve others’ attempts to post them, either. This blog was created as a conversation space mainly to share experiences about rheumatoid and related diseases and help connect people who have them.

I received a comment on my post about alternative and “recognized” therapies that was a rant very passionate discourse against “Big Pharma”. I recognize that a lot of people hold similar views. Heck, I have good friends who hold those views. And while the comment did contain some interesting information about an alternative therapy that was working for the commenter, after some consideration, I disapproved the comment. To me, it crossed the line on using my blog as a platform to further their personal attack on the pharmaceutical industry. Whether I agree or disagree, that’s not what this blog is about. Is this censorship? Yep. No doubt. But that’s the great thing about having a personal blog. You not only have the right, you have a responsibility to ensure that its content stays true to the intent.

Within moments of hitting the “disapprove” button, I got a second comment that was a wholesale, full frontal personal attack on me for disapproving the comment. I guess my not wanting this person to use my blog for her personal soapbox makes me a bad person.

If you want to bash “big Pharma”, debate politics, condemn people of other races, religions, or sexual preferences, there are plenty of other forums for you to do so. Or you can create your own forum by starting your own blog. It’s a wonderful thing.

Not because of the second “hate mail” comment I got, but because parts of the first comment were informative and did have relevance, I have posted the part of the comment with the information about the great results received with CBD patches (a cannabis-based therapy). This is the kind of information I want to share with my readers – things that might be helpful or supportive of others. All comments of this sort are welcome.

Thanks for checking in.

Therapies, personal choices, and labels

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I believe strongly in an individual’s right to make personal choices and this is particularly true when it comes to things like religion, politics, and medical treatments. And choices on medical treatments include whether you embrace what we’ve come to consider as “Western” (pharma) treatments or “alternative” treatments or some of both.

One of my friends (who also happens to be an outstanding voice in the RA community, http://thelifeandadventuresofcatepoo.blogspot.com/) embraces the Paleo diet as part of her overall health regimen. While controversial in some circles, it has provided amazing results for her. Another one of my friends is a walking encyclopedia of natural supplements and has a deep understanding of how many of them are metabolized and used by the body. They both see positive benefits of these “alternative” treatments.

I don’t normally discuss personal beliefs in a public forum (because they are, after all, personal), but I tend to come down on the side of Western pharmaceuticals. I bring this up now because there was a recent article in the New York Times by Aaron E. Carroll, MD, MS entitled, “Labels like ‘alternative medicine don’t matter. Science Does.” (http://www.nytimes.com/2015/08/11/upshot/labels-like-alternative-medicine-dont-matter-the-science-does.html?_r=0) This article states my views/concerns/beliefs more eloquently that I probably can. In this article, Dr. Carroll points out that we need to reframe the discussion. There aren’t therapies or “alternate therapies”, there are just therapies. They either work or they don’t.

The primary difference is that there are (usually) lots of scientific studies behind Western medicine and, while there might be thousands of years of anecdotal evidence behind “alternative” treatments and medicines, there often isn’t objective, scientific research done on them. This doesn’t mean they’re not valid. This doesn’t mean they don’t work. And this certainly doesn’t mean (in my personal opinion) that an individual shouldn’t incorporate them into his/her personal treatment plan if they believe they will help. But it does mean that a licensed physician may be unwilling or unable to prescribe something to a patient without documented evidence from recognized clinical investigation that it is both safe and effective. And while there are naturopath and homeopaths and other “alternative” health practitioners who do prescribe them, Dr. Carroll points out that “mainstream” doctors can and do regularly prescribe “alternative” treatments that have shown merit after clinical investigation including such things as diet, exercise, folic acid for pregnant patients, and even things like acupuncture and massage.

I’ve wandered a bit off course here, but Dr. Carroll’s point is that we need to quit separating therapies into mainstream and alternative categories and simply separate them into therapies that have been studied and proven to work vs. those that have not, regardless if the therapy has its origins from a pharmaceutical company or from historical practice. (As an aside, many pharmaceutical miracles have come about because scientists started with research into folk medicine, discovering the elements that were effecting the positive results and refining them.)

I take supplements. For example, on a daily basis I take lysine to help control the massive fever blisters I get and I also take cinnamon to help blood sugar levels. But the supplemental therapies I use have two things in common. First, they have been clinically studied and shown to be effective. Second, and very importantly, they do not interfere with the other therapies I’m on, which include things life-saving prescription blood pressure medications and powerful biologic medication for my RA.

My friend, who loves me, will occasionally send me information on a new supplement or natural product or other therapy for RA. Her goal is to make my life better and I am very blessed that I have someone who cares that much about me. (And yes, she subscribes to this blog so she knows I’m talking about her.) My concern is that neither she nor I have any way of knowing if one of these approaches will in some way interfere with the delicate balance of the drugs I’m on because it doesn’t have the clinical trials behind it. That doesn’t mean it doesn’t work, but it does mean it could have disastrous results for me.

Even with alternative/natural/homeopathic remedies that do work, there are issues. Generic drugs have, for example, time and time again, been shown to not always be the equivalent of the original. And generic drugs have met FDA standards and are produced in tightly controlled environments. Supplements and alternative medicines are not subjected to these standards. So if generics are a step away from the original, how far away are supplements that are produced without oversight or regulation? I am not saying that supplements are bad. I am saying that if you make the personal decision take them (as I have), then you need to also take the personal responsibility to do your research on who produces them and how they are produced. You want to get the safest most effective supplement you can.

I’m not a big fan of labels. Race, gender, age, sexual preference all tend to be labels that divide us, sight unseen. But some labels, such as the nutrition labels on food, can help us live better, healthier lives. So I’m all for taking of the “Western”/”alternative” labels off and going for the “proven”/ and “yet-to-be investigated” approach instead.

I hope whatever therapies you are on – Western or alternative, proven or yet-to-be investigated – that they help make a happier, healthier you. Thanks for checking in.

Crickets Without Legs


I first posted this in 2010. Unfortunately, some things never change.


 

It seems that recently I keep running into situations where people, that even when given an appropriate amount of input, come to distinctly incorrect conclusions. (Hopefully my doctors will be immune from this apparent epidemic.) Rather than get discouraged, I think back to the following anecdote first told to me by my friend Pat an eon ago. It helps me keep my sanity (and my cool).

A researcher was studying crickets.

One day she took a cricket and put it in a large box. She clapped her hands and the cricket jumped.

She then took the cricket out of the box, pulled off one of its legs, and placed the cricket back in the box. When she clapped, the cricket jumped, although not quite as high as the first time when the cricket had all its legs.

She repeated the process a second time; a third time; a fourth time; and a fifth time — until the cricket only had one leg attached. Each time the researcher clapped her hands, the startled cricket would jump.

Finally, the researcher removed the cricket’s last leg. She placed the cricket back in the box and clapped her hands. However, the cricket failed to jump. She clapped again. The cricket remained still. She clapped a third time and still no response from the cricket.

“Ah, ha!”, the researcher concluded. “Crickets without legs cannot hear.”

Thanks for checking in.

Joint Decisions Chat / Live in Phoenix!

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Just a reminder that the second Joint Decisions web chat is Wednesday, August 5. Also, they’re having a terrific live event in Phoenix with the wonderfully funny and insightful comedian Matt Iseman. Links below and more information can be found on the Joint Decisions website: www.creakyjoints.com/jointdecisions.Joint Decisions

  • Second Joint Decisions chat, “Shaping Your Story: Managing the Mental and Emotional Challenges of Life with RA,” taking place on Wednesday at 6 p.m. CT with Eduardo Flores (aka, Rheumatoid Arthritis Guy)! The chat will tackle the important issues around mental and emotional wellbeing for people living with RA, as well as other useful topics. Follow this link to register: http://po.st/8uwCyU
  • Joint Decisions’ first in-person event on August 12 in Phoenix! The event will feature Matt Iseman and a rheumatologist for a humorous night of RA-related comedy and education. You can RSVP by emailing: JointDecisions@toniclc.com or calling 215.928.2361.

Where does it hurt?

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We’ve all had those moments. Those transcendental moments between sleeping and waking in the morning. Those moments where we somehow slip seamlessly from the vivid reality of our dreams to the dozing slumber of our bed.

Lying there, still somnolent, I used to try to orient myself to the day. Was it a weekend? Could I roll back into the arms of slumber and ignore the clock? Was it a weekday with a calendar filled with deadlines where I had to leap up and fuel my adrenaline with caffeine? Was my husband still sleeping beside me or had he already gotten up or, perhaps, was traveling and hadn’t been in bed at all?

I no longer have those somewhat delicious waking thoughts in the morning. Thanks to RA, my first thought in the morning is now, “Where does it hurt?”. I’ve traveled well beyond the boundary of, “Does it hurt?”  …

Read the rest of the post on RheumatoidArthritis.net: https://rheumatoidarthritis.net/living/where-does-it-hurt/

Actemra(2)

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So I saw my rheumatologist today. She could tell that I haven’t (yet) gotten the anticipated results from Actemra, so she’s increased the dosage from an injection every two weeks to an injection every week. The good news is that I haven’t had any side effects and my labs look good, so it should be safe to increase the dosage.

I also got a steroid shot. I had asked that she inject my ankle. My ankles have never really been a problem but lately they’ve been very painful, especially my right one. But the bursitis is also back in my left hip. She said she’d inject my ankle if that’s what I wanted but she could only inject 40 mg of steroids in the ankle, whereas she could inject 80 mg in my hip, and therefore the overall effect of the steroid would be greater.

So we’ve upped the ante on the medication. Let’s just hope the insurance and the specialty pharmacy and all the other holders of red tape go along with the plan and, once that happens, that there are some good results.

I hope the things that increased in your life today made you happy.

Thanks for checking in.

Going Naked

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(Sorry, this post is not about skinny dipping …)

A few years ago Michael J. Fox, well-known for his iconic role in the Back to the Future movies, spoke to Congress about Parkinson’s disease, with which he’s been afflicted for a number of years. In preparation for his testimony he stopped taking his Parkinson’s medicine. His reasoning was that he wanted people to understand the reality of the disease — not the disease masked by drugs. He’s been both criticized and praised for this approach, but regardless, his actions struck a nerve with many people including me.

RA, for many people, is an invisible disease because it is controlled enough that they live relatively normal lives and they (that insidious phrase), “don’t look sick.” But it’s generally because, like Michael J. Fox’s Parkinson’s disease, it’s controlled by medication and sometimes just sheer will.

I go see my rheumatologist tomorrow. She recently started me on a new biologic (Actemra) because the Kineret I had been on stopped working (as did the Remicade and the Xeljanz and the Cimzia and the Enbrel and all the other drugs before that). While on Kineret I had also been taking leflunomide but had to stop because of liver enzyme problems. When that happened, she started me on the prednisone. Then when the Kineret also stopped working, she left me on prednisone to help phase me into the new drug. So I’ve been on prednisone since mid-March.

Well, I’ve phased myself off the prednisone, so I’m only on the Actemra. I did this for a couple of reasons. First, I don’t like being on prednisone for long periods of time. (I have 15 pounds of added reasons for getting off of it this time.) The second reason is that when I see my rheumatologist, I want her to be able to clearly judge how effective (or not) the Actemra is without the masking effect of the prednisone.

Prednisone has a wonderful effect on me. It makes me feel/look/act like a healthy person. It also makes it very difficult for me to go bouncing into my rheumatologist’s office claiming that my biologic isn’t working when none of my joints are swollen and I don’t hurt anywhere. Without prednisone, it’s a different story.

I’ve only had three Actemra injections — each two weeks apart, so (thanks in part to the delay in getting insurance clearance), I’ve only been on the drug for four weeks. And as many biologics as I’ve been on, I know that it can take up to three months for a drug to be effective. So while I’m not throwing in the towel on Actemra (yet), I can tell you that right now it isn’t working. And I want my rheumatologist to clearly see the (non) effect of Actemra.

It’s been a rough few weeks. I had high hopes for Actemra because the day after my first injection I felt really well. The day after my second injection I had one of the worst flares of my life and I’ve never fully recovered. I’m still flaring. Some days are better than others and some days it’s all I can do to get out of bed.

But my rheumatologist needs to see that so we can decide what we need to do. I won’t let my RA hide behind the mask of prednisone.

I hope whatever mask you’re wearing today comes with a smile.

Thanks for checking in.

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