A little over a week ago, I not only found myself in the middle of a flare, but I also found myself quite surprised with the manner in which I reacted to this flare. Over the past couple of years, I’ve tried really hard to make each new flare a learning moment…an opportunity to put into practice many of the different coping mechanisms that I continue to explore and put into place. On this morning, however, the one nagging feeling that I just could not get rid of was one of doubt. Doubt is a bad enough feeling to experience; to do so in the midst of a major flare just seems to make everything a hundred times worse.
I still don’t know exactly why I was so focused on second-guessing myself, maybe it had something to do with the fact that I was in the back seat of a taxi, outside of my “normal” flare-coping environment. I started doubting my positive attitude. I started doubting the fact that I’ve somehow managed to incorporate exercise back into my daily routine over the past few months. I started doubting the fact that I’ve not taken meds in the past five months (a decision that, even while in the midst of this fog of self-doubt, is one that I knew is the right decision for me at this time.) I even started doubting the idea that I try to share all of my victories–big and small–here on this blog; although, come to think of it, I know that I’ve never tried to hide or underplay the struggles and setbacks that I’ve encountered along my journey through chronic pain and debilitating inflammation.
So as the flare passed, I find myself sort of shocked. Why hadn’t I just used all of the different techniques that have proved so helpful in the past? Was I really questioning the treatment plan that I’ve established over the past half year, a treatment plan that has focused on stress-reduction, positive thinking, mindfulness meditation, and regular physical therapy. I don’t think so. Was I unhappy with the results that I had seen so far? I don’t think so…but I decided that during the next few days, I would give this question a little more thought.
And that’s when the real surprise set in.
Looking back to the start of this year, during the time between January and March, my rheumatoid arthritis was in complete control. I had flares that lasted weeks. I continued to push myself past the limits of my body, as I went to the university every day to teach. Right around this same time, I had recently been given the green light to start my meds again, after being off of them for a few months due to liver damage. I started taking pill after pill, and shot after shot. Now, I’m not going to say that some of these pills (prednisone) and that some of these shots (corticosteroids) didn’t work, they did…but combine the stress of worrying about the serious side-effects of my medicines, with the stress of keeping up with my job…and it’s easy to see (now) how all of this stress just compounded the constant challenges of living with chronic illness.
At the end of last week, a former student asked to meet with me over coffee. As I walked to the coffee shop that afternoon, I noticed a small bounce in my step…and I smiled to myself. You see, the last time I saw this student was during the time that I described above. Then, I was barely able to walk, even with the help of my crutches. Now, I was not only walking with relative ease, but I hadn’t even used a cane or a crutch in how many weeks? A little more than a month, I answered to myself.
A couple of days ago, as I sat in the tub taking my morning bath (stand-up showers are now a thing of the past) I noticed a little more definition to the muscles in my forearm and upper arm. I did my best Popeye-muscle flex ever (blush), and was surprised to see that my arms were indeed stronger than they’ve been in years. And then I remembered back to a few days earlier, when I put on a pair of jeans that I hadn’t worn in a month. I was surprised with the fact that they were fitting more snugly than they once used to…not necessarily in the waist, though. As I stood in front of the mirror that day, confused, I realized that my upper legs were much larger than they have ever been. Sure, this past April when I started swimming on a regular basis I expected that it would help me maintain my flexibility, but I never expected that it would actually make me this strong, physically.
And then, I realized that the reason that I haven’t used my crutches or cane in the past month isn’t because my knees and ankles have been pain-free, but it’s because my legs have actually become much stronger than they’ve ever felt before.
As I continued to explore whether or not I was unhappy with the results of all of the major changes that I’ve made over the past half year, I had my answer. Even though I continue to have dips along the way, my entire personal health baseline has definitely been trending up, for the better. A couple of weeks ago I wrote on Facebook that living with RA makes everything ten times harder, but all that means is that I am now ten times stronger than I once use to be. Of course, I meant this in a figurative sense, and was referring to emotional strength. It’s nice to know, though, that this can also be applied to physical strength.
That morning when I reacted so uncharacteristically to my flare, I was indeed having a moment of weakness. I’m sure that these moment of emotional and physical weakness will always continue to be present. But that’s okay, I’ll continue to accept these moments of weakness in my life, for they’re actually little reminders for me to stop, step back and look at the big picture, and realize how much stronger I have been able to come, in both mind and body.
And to be honest, I’m still pleasantly surprised to see exactly how much strength can actually grow out of weakness.
(Oh, and since that flare a little over a week ago, when my thoughts were so full of doubt, I haven’t had another! That makes eight days straight without a flare. I’d have to go back to sometime last year, 2010, in order to find a similar period in which I’ve had such a streak. )
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
A Change of Plans With a chronic, incurable disease like Rheumatoid Arthritis, this is not the retirement I had planned. Sometimes I blog about RA. Sometimes I blog about the other 90% of my life – but RA is always there.
Read More: http://www.rachangeofplans.blogspot.com/
I am a middle school teacher that happens to have Rheumatoid Arthritis (RA). I was diagnosed about 5 years ago and have been taking a ridiculous amount of medication ever since. I have always felt fatigued and just generally yucky! With a recent change of rheumatologists and a decrease in medication, I started to feel a lot better! I then stumbled across some healthy living blogs and I started to wonder how my diet might me impacting my RA and other health issues I have been experiencing. As I did more research I realized that I drastically needed to change my diet. The first thing I did was go gluten-free! This blog will be a crazy mix of all things related to teaching, having RA, being gluten-free, and whatever else comes up in life!
Read More: http://noshingwithnatalie.wordpress.com/
oh frabjous day!
I was formally diagnosed with rheumatoid arthritis on my 23rd birthday, not too long ago, but a lifetime away. Some days I am fine, and some days I really am not. This week is a ‘really am not’ week.
Read More: http://momerath.wordpress.com/
My rheumatologist seemed truly shocked when on my last visit I told him that I hurt everyday. I’m not sure which one of us had the more confused look, him that I said I hurt everyday or me being shocked that he had not understood this before.
Even though I’m a strong advocate of open an honest communication–especially when it comes to my rheumatoid arthritis–sometimes I’m struck by the huge distance between the words that come out of my mouth, and what I’m really thinking or feeling.
And it’s not that I feel guilty about this…sometimes, giving non-specific answers just seems like the best and easiest thing to do. Take, for example, this question: “How are you feeling?”
How I answer this question depends not only upon how I’m actually feeling, but also upon who I’m speaking with. There are times when this question is being used as a generic greeting, so I respond with an equally generic response. “I’m doing okay, and you?” But if I’m asked by someone who really wants to know how I’m feeling, I try to provide a little more information and truth in my answer. “I’m okay, but my left knee is really acting up” or “I’m having a rough day.”
Which got me to thinking the other day: wouldn’t it be nice to have an RA to English translator, to do the work for us when we just don’t feel like filling in all the blanks? For example, when I say that I’m having a really good day, this rarely means that I’m anywhere close to being pain-free…it just means that my overall pain levels are lower than usual.
Such a translator could also prove very helpful with another common example of “social discourse: all of the suggestions that we are subjected to, usually while at social events. (You know what I’m talking about.) “I too used to have what you have, but I started taking bee pollen once a week and I was completely cured!” and so on, and so on!
I used to get upset at some of these comments. I used to feel the need to educate these people about the truth of my disease. But not anymore. Once again, there might be someone who is really interesting in sharing some insightful information…and I respond accordingly…but experience has shown me that a majority of these individuals don’t really care about what I’m going through; they’re solely interested in passing on something trivial that they heard a few days before.
So I smile, tell them that I’d love to hear more about whatever they have to say, and then feign the sudden need to answer my phone/go to the bathroom/check on something in the kitchen/etc. If I were to translate what I’m really thinking at such a moment, it wouldn’t be too–let’s just say–family friendly!
I posted one of my “RA to English Translations” (shown above) on Twitter earlier this week, and in response got some great translations such as the following two from Stephanie and Brandy. And I chuckled, because there have been multiple times in the past when I’ve said these words, and meant the exact same thing.
So I’d like to close this post by asking, what’s your favorite RA to English translation?
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Okay, when I first read this article I thought it was just someone’s idea of a bad joke…but it’s real!
Within the next 12 months, whether you like it or not, about 10 million Americans are expected to be scored — much like a credit score — on how likely they are to fill a prescription and take all the pills the doctor ordered, on schedule.
FICO, creator of the widely used credit score that predicts whether you’ll borrow responsibly, is now rolling out its new Medication Adherence Score.
Can someone please tell me what the benefit of such a system is, from a patient’s point-of-view? The company states that “those who score low can be targeted for extra reminders and educational efforts, with the goal of making patients more likely to complete their prescribed regimens.” My $7 plastic pill reminder box from Walgreens seems to be doing a good enough job, thank you very much.
What won’t happen, FICO says, is your insurance taking a hit because of a low score. “No decision is being made as to whether someone is getting access to health care,” says Shellenberger. That’s because companies can’t use the Medication Adherence Score when deciding whether to provide health insurance and how much to charge for it. “The score was not designed, tested or validated to serve as an underwriting tool. And, underwriting is not an allowable use of the score under the terms of our client contracts,” Shellenberger says.
FICO declined a request for a copy of the contract. FICO says consumers can find out if they have scores by asking their health care providers.
As a commenter wrote, if such a score is not going to be used for insurance purposes, what exactly will it be used for? Is this program opt in? If it’s not, how will a person be able to opt out ? For me, there are just too many questions, and not enough answers, to be comfortable with this idea.
Do we really need more ways for insurers to “justify” their continually increasing denials of coverage?