“Quality of Life (QoL) is a phrase used to refer to an individual’s total wellbeing. This includes all emotional, social, and physical aspects of the individual’s life. However, when the phrase is used in reference to medicine and healthcare as Health Related Quality of Life (HRQoL), it refers to how the individual’s wellbeing may be impacted over time by a disease, a disability, or a disorder.” http://en.wikipedia.org/wiki/Quality_of_life_(healthcare)
I think some people who have been reading my blog for a while, and who have gotten a sense of my personality, know that I am the type of person who marches to the beat of my own drum. In my opinion, life is way too short to continually be worrying about “what other people might think”.. even more so as a disabled gay Latino guy. Trust me, I’ve heard *everything* when it comes to how I should or should not be living my life. Ultimately, though, the final decision comes down to me.
This is the same attitude that I apply towards my healthcare treatment options: it’s my life, my body, and I am going to decide what treatments options I use at any given time. Sometimes I use medicines (and start hearing here on my blog and on my Facebook page that I am “poisoning” myself), other times I don’t use medicines (and start receiving comments that I am “irresponsible” and “anti-med.”) While I don’t necessarily put too much weight in these types of opinions that I receive (see above), apparently neither does my rheumatologist, as he has always completely supported whatever decisions I make regarding my treatment plans. I do find, however, that such a linear approach to discussing this topic is not only overly-simplistic, but it also is not very helpful.
I don’t look at different threads individually, whether they be medicine, diet, exercise, emotional health, etc. I think of the whole; I think of my quality of life…because how I treat my rheumatoid arthritis is not something that I only have to figure out in the short-term for the next few weeks or months. It is something that I have to figure out for ever.
It is something that I have to figure out for life.
During my most recent flare that lasted more than a month, I quickly not only increased the dosage of my meds, but I also added Prednisone and multiple anti-inflammatory and steroid injections. I did notice some immediate temporary relief, but no lasting relief. As my symptoms continued to spin out of control, even my doctor struggled with what we should increase, being that my liver still has not gotten the all-clear from it’s most recent elevated enzyme scare. At a certain point two weeks ago, however, I told myself that I had had enough meds (as in I would continue with what I was on, but I would not add any more.)
I made this decision because my quality of life is much more than just the amount of disease activity that I might be experiencing. It’s also about how my body feels, and what my mind thinks. It’s about whether I am running to the bathroom every few minutes because my stomach is taking a beating from the meds. It’s about no longer feeling that I know my body…not because of the pain and disability, but because all of the different medicines that are streaming through its systems.
It’s about wanting to drink a margarita. (There, I said it, and I’m not the least bit ashamed!) It’s about wanting to drink more than one margarita, without having to calculate which day of the week is furthest from Methotrexate day. It’s about having gone almost all of 2012 alcohol free, and wanting to add a dash of Kahlua or Bailey’s to my coffee every now and then.
Quality of life is accepting that my rheumatoid arthritis is not only present, but it’s also progressive. And while the goal of many treatment plans is to slow the progression of this disease (which in the end what does this really mean?), or even to reach the Holy Grail of remission, one (or at least, I) must ask: at what cost?
The answer to this question is as individual as we are different people who are living with this disease. We all make different decision, and we darn well should be doing. Some of us focus on the medicine aspect of treatment. Others focus on the diet aspect. Yet others focus only on alternative treatments. Some try a combination of treatments. Some go a decade without making a change to their treatment plan, while others like to mix things up every few months.
Who is to say what is the one right way to treat rheumatoid arthritis?
No one. Because no one right way exists.
What exists are lots of different ways that work for lots of different people.
Here’s hoping that everyone who lives with rheumatoid arthritis and other types if inflammatory arthritis are successful in finding what works for them. Here’s further hoping that people are able to talk about what they are learning and discovering, without judging others and without being judged themselves.
Here’s hoping that we *all* have the best quality of life possible, no matter what approach we use to get there.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Last night, I had one of my longest cries in a long time.
On Monday of this week, I called my doctor because my rheumatoid arthritis continues to worsen, even though two weeks ago we upped all of my medications and added a one-month Prednisone boost. One of the worst feelings in the world–even though I know that these meds often taken a while to produce the improvements that I’m looking for–is realizing that they are in fact not providing the help that they once used to. But this is not why I was crying.
As I wrote on Facebook last evening, I’m so far ahead of the game, on so many issues related to my rheumatoid arthritis. There is one thing that I’m still playing catch-up to, though, which is that fact that I am increasingly losing the use of my hands. My hands are in pure agony when they’re sitting still; wrapping them around the curvature of my computer mouse or trying to lift a cup of tea are becoming more and more of a challenge. I know that I need to start looking into more adaptive and assistive devices, both for my computer and for everyday tasks around the house. I also know that I am quite capable of making these adjustments, no matter how scary they may appear at the moment. Once again, though, this is not why I was crying.
My left leg is again randomly pulling itself into a huge knot. (This once happened while I was at PT, and my physical therapist flipped out…she had never seen anything like it!) In order to sleep I have to wrap a heating pad around it, in a last-ditch attempt to try to loosen some of the muscles. Of course, this doesn’t stop me from still waking up screaming, because–you’ve got it–my left leg decides it wants to look like a tangled-up slinky toy. (Just like “pain” doesn’t accurately describe what we live with, neither does “cramp” even begin to describe what is going on in my limbs at the moment.) Even as I was simultaneously experiencing all of these issues last night, and as it felt like my entire musculoskeletal system was crumbling to dust, I continued to ask myself why I was crying. All of the pain, spasms, cramps (whatever you want to call them) were still not the reason why I was crying.
I continued to look for an answer. Why exactly was I crying so much?
And then it came to me. I was crying because, at a certain point, the pain and the disability just feel like a box that is being erected around me, isolating me not only from the rest of the world, but also trying to isolate me from my own thoughts and my own body…and while for anyone else this box may be completely imaginary, for me there are many times when it becomes all to real. It is my mind’s way of trying to understand what is means to have no control over what is happening to my body; it is for the hundredth-, if not thousandth-, time once again experiencing the shock of not being able to move all or part of my body.
I reminded myself, though, that even if I feel like I’m trapped inside of a box, there is still a lot that I can do. I can–and must–punch holes in this box; doing so not only allows the light in, but is also lets everyone else see what is happening to me.
I’m not a victim, and I don’t want sympathy…but I *do* want people to see what it means to live with rheumatoid arthritis.
When I was a graduate architecture student at Harvard–almost a decade before RA entered into my life–I was completely fascinated with the concept of accessible design; where things such as ramps are an integral part of a building’s design and not just items that are added in order to meet accessibility requirements. I was so interested in this idea that I decided to make it the basis of my graduate thesis, and applied it to the design of a museum for prosthetic devices. I was excited by the thought of displaying these objects of beauty and design–both historical and modern–in the context of an “art” museum. (Eyeglasses, hearing aids, wheelchairs, artifical limbs, crutches, and the list went on and on…)
My excitement, however, left me completely unprepared for some of the comments I received during my thesis review, along the lines of I was showing things that were “supposed” to be hidden. I forgot some of the exact words that were used to describe my project, but I do know that they were not encouraging…and while much of the feedback had nothing to do with the actual design and execution of my project, it had everything to do with my basic concept. According to some on the panel, what I was doing was just plain wrong.
These words have stuck with me ever since, even more so now that I am disabled. (Who would have guessed that this entire issue would become much more personal than I could have ever imagined?) As I’ve gone through the many years of living with chronic pain and disability, though, I’ve made it more of a point than ever to not hide what is happening to my body.
I am not hiding it from others. Most importantly, I am not hiding it from myself. I am punching holes in the omnipresent box that surrounds me.
Which leads me to the present. Show Us Your Hands!, an international awareness movement that serves to unite and inspire people who live with inflammatory arthritis. Over the past few months, as this project has moved from its initial community collage to the nonprofit charity organization that it will soon become, I’ve heard some of the same echoes that I heard many years ago, back when I was a design student. “You’re not supposed to be showing things like this.” (Our hands.) “This is an aspect of our diseases that should remain hidden.” (Shame and stigma.)
Luckily, I am not alone in this challenge. We are all punching holes in the boxes that surround us. We are showing the world our lives, and we are showing the world our hands. We no longer hide.
As someone so eloquently stated in response to the Show Us Your Hands! Community Survey, “Show Us Your Hands! has created a unifying voice for those suffering from inflammatory arthritis, and provided a way for each of us to become advocates and to spread awareness. I am inspired to see that others are able to cope and remain positive.”
Or, “Normally I would not show my hands, in fact the opposite, I tend to hide them away as I sometimes get an adverse reaction from some people. This is an opportunity to say….This is me! I have to live with these hands! My hands show a journey of pain and survival!”
Let’s work together to continue to punch holes in the boxes that surround us, so that one day, such boxes will no longer even exist in the first place. Where instead of feeling trapped and isolated by our diseases, we can instead share our lives and share our challenges in order to unite and inspire one another.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
The mind is a powerful tool. It can either guide us forward on the path to happiness, no matter how “bad” things might be, or it can–especially when depressed–lull us into a false sense of comfort (which in reality is actually not comfortable at all, but instead is completely miserable). While many people know me as a super-positive superhero who successfully copes with the challenges of rheumatoid arthritis on a daily basis, I’ve never hidden the fact that just a few short years ago, I myself was stuck in a very dark place that was full of depression and suicidal thoughts.
I was miserable. I was isolated. I was angry. I was depressed. I was emotions that don’t even have a name. The pain and disability had taken control of my life, and my mind and body were just unhappy passengers on an endless ride.
No matter how confused I was and no matter how lost I felt, though, I am fortunate that there was a part of me, deep down inside, that always yearned for something better, even–especially–during these darkest times. I had absolutely no idea what it meant to combine “happy” and “chronic illness” in a sentence, much less what it meant to combine them in my actual life. Might it be possible to do so, I’d ask myself with trepidation? I mean, when I would venture into so many informational sites, blogs, and forums of discussion that I found on the Internet, there was often an overwhelming sense of doom and gloom. Stories of setback were commented on almost enthusiastically, whereas stories of acceptance and triumph–or even the desire to try to figure out how to do so–were either ignored or told to go away. (I know, having been on the receiving end of such comments.)
Luckily, I’ve always had the personality where whenever I’m told that something cannot be done, I immediately go about finding a way to make it happen…which means that many of the comments that I received years ago (and continue to receive to this day) rather than discouraging me, have had the complete opposite effect. I haven’t done this alone…thanks to my blog and to my Facebook page, I am now surrounded by thousands of other people who have the same mindset. Some welcome me from places of happiness that they’ve been occupying for years, despite their pain and disability, while others readily admit that they’ve not yet come as far as I have, but that they hope to get here sometime soon. In the end, what matters the most is not the specific location where we find ourselves at the moment, but the fact that we are all moving in the right direction, towards continued and increased hope and happiness.
Yesterday I received an email from a lady who told me about her “happy RA search” that she started a while back, as she looked for support groups that would be positive, funny, and that would make her have hope. According to her, she found nothing…that is, until she found my blog and Facebook page. She went on to thank me profusely, in a way that certainly made my day, if not my week.
So I in turn would like to thank everyone who follows Rheumatoid Arthritis Guy; to everyone who knows from personal experience that while the challenges that we face on a daily basis at a minimum are substantial and at the maximum sometimes tend to border on the “impossible,” also knows deeps down inside that each one of us has the ability to overcome them. They also know that as a group, that by sharing our stories, our lives, and our challenges, that were are not only helping ourselves, but that we are also helping others.
As Nic wrote on my Facebook page yesterday, “[When] living with a chronic illness sometimes understanding is all you need. Thanks for understanding.”
To everyone who understands the challenges that we face–whether you live with chronic illness or know someone who does–and who also knows that hope and happiness, and not doom and gloom, are the only way forward, thank you so much. Sometimes understand is all that we need.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
I’m not a big fan of superlatives, and rarely feel the need to always have to compare one thing to another (first, best, biggest, only, etc.), but I must admit that there are instances when it becomes necessary to use certain qualifiers, in order to better understand the item that is under inspection. So as I look back at my most recent flare–a flare from which I am still emerging–I can say, without a doubt, that it was my “worst” flare to date.
Why do I say so?
For days on end, I had absolutely no idea how I was still able to move. Honestly. I know–and live–the whole “mind over matter” thing, and remind myself as much on a daily basis. This is an absolute necessity, when one lives with chronic pain and disability. Over the past few days, though, I really had no idea how I was able to move…even as I, somehow, continued to do so.
In the past, it’s always taken weeks–if not months–to fall into a flare as severe as this one. This time around, it took just a matter of days. And during previous flares, I’ve usually topped out at two major peaks of disease activity, during my days of continuous pain and inflammation. During this flare, I entered into the unfamiliar territory of having three major peaks each day…just as I was coming out of one crisis, I was almost immediately going back into another one.
I think we’re all familiar with the snapping and cracking sounds that are constantly emitted from our arthritic joints, but never before had my bones produced entire musical scores that were almost as long as Beethoven’s third symphony. Even after I’d stop moving my right shoulder, it would still–almost magically–continue making sounds…and if I’d take a drink of water, my jaw would rattle for the entire duration. (And silly me, all I could think was that these sound effects would be so cool two weeks from now, on Halloween!)
When I finally got around to calling my rheumatologist Monday morning–a few days before having mistakenly thought that I could go at least another week without having to see him–my life had become a complete blur, with a few moments of clarity here and there. I really do think he lost count of the number of inflammed joints in my body (or maybe after a certain point, a specific number doesn’t even matter anymore)…and the time it took him to jot down notes after my physical evaluation, which usually takes just a few seconds, ended up taking minutes.
But despite all of the above, I’m reluctant to label this flare as my worst yet. In a weird sort of way, I actually consider it to be my best flare to date. “Best” and “flare,” how can these two words be used in the same sentence, especially from someone who doesn’t even like superlatives in the first place, you might be asking? Well, let me explain.
This was the first major flare that I’ve gotten through without an anxiety attack. (Enough said!)
I used every second of this flare to try to learn something, not only about the pain but also about myself. Instead of staying in bed and getting depressed, I decided to dress up and go out to a nice dinner. Instead of crying (and don’t get me wrong, I don’t think there is anything wrong with crying…in fact, I think it’s one of the best ways to work through certain emotions), I decided to smile and laugh…as much as I possibly could.
Whenever there was something that I could not do, I reminded myself that there was something else that I could do. When even holding my 7″ tablet to read became too painful, I listened to music…and I didn’t just listen to music that I already knew. I decided to explore something new. (And this is how, over the past week, I listened to more Jazz music than I’ve probably ever listened to in my entire life!)
I managed my expectations well. Even on Monday, after I received my corticosteroid injection, I continued to spiral downwards. I wanted to relief right then and there, but I had to remind myself that my doctor said it would take 24-48 hours to take effect. And sure enough, the worst of my flare started to subside the following day. And as I sit here two days later feeling an entirely different type of pain–the destruction that this latest flare inflicted on my body–I know that it’s going to take time to get back to where I was just a few days ago. So I’m giving myself an entire month, to rest and recover. I didn’t get here overnight, and I’m not going to get out overnight. I’m going to manage my expectations accordingly.
And during the most challenging moments of my recent crisis, I knew where to turn to for help and support, and did so without hesitation. Sometimes it was matter of making a phone call, or requesting a hug here at home, or posting something on my Facebook wall. Whatever it was, it all fell under the realm of not only knowing that I needed help, but also knowing that it was okay to ask for this help…and realizing that I was surrounded by more people than I could have ever previously imagined, who were waiting and ready to offer a helping hand and some kind words of support and encouragement.
And this is how my “worst” flare became my “best” flare ever.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Please consider making a donation to Rheumatoid Arthritis Guy.
- Canyons, Bridges, And WavesAugust 27, 2014 - 8:23 am
- I Thank My Rheumatoid Arthritis For…May 25, 2014 - 1:07 pm
- Visual Journal: My StoryDecember 18, 2013 - 12:31 am
- FreefallDecember 11, 2013 - 11:46 am
- My Decision To Not Use Medicines Right Now Is All About Personal ResponsibilityNovember 6, 2013 - 11:13 am
- Arthritis Broadcast Network: Spotlight On Arthritis SuperheroesSeptember 10, 2014 - 7:34 pm
- The New York Times: Actress, Artist, Sometimes Both At OnceMay 20, 2014 - 10:29 am
- The Columbian: Arthritis Not stopping 20-Year-Old Nursing StudentApril 15, 2014 - 3:25 pm
- Name My Cane!November 9, 2013 - 11:51 pm
- StælkenNovember 4, 2013 - 1:57 pm