“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!
In a Special Guest Blog Post, RA Guy answers the question he is most frequently asked by his readers: How does he manage to stay so positive, despite the challenges he faces on a daily basis?
“For me, a positive attitude doesn’t mean that I hope my pain goes away; it means that I hope to be able to cope with this pain even better.” —RA Guy
Over the many years of blogging as Rheumatoid Arthritis Guy I have received many messages from readers, more so than most people might be able to imagine. A majority of these messages can easily be divided into two groups. The first are from people who appreciate the sense of humor that I continually apply to my life with RA. (Because sometimes, a wicked sense of humor is the only way forward!) The second are from readers who tell me that they are inspired by my ability to maintain a positive attitude, despite the challenges that I face on a daily basis.
While I make it a point to respond to each and every email personally, I must admit that there are times—especially when my rheumatoid arthritis symptoms are at their worst—that some of these messages start to slip through. So I would like to take this opportunity to respond publicly to the one question that I am asked most frequently: How do you continue to stay so positive?
What advice would you give to someone who has just been diagnosed with RA?
I would tell them to have faith that they’ll be ok and to look for their family for support because they’ll be needing a lot of it. Also to look for help if they feel depressed because there are other ways out besides ending it all, and I say this because I have been there and at the time my only motivation was my newborn child.
Do you use any mobility aids?
How has living with RA helped to improve your life?
I take everyday as if it’s my last one and I enjoy every minute I can enjoy with my son without having to struggle.
Do you have any visible signs of RA?
No, well my right pinky is crooked and it is noticeable.
Can you please describe some of your favorite coping strategies for living with RA?
Watching my son grow gives strength and just hearing his laugh makes me feel better and makes ME want to smile as well. I love him to death and he makes me want to live long and hard.
Can you please describe your current medical (traditional and alternative) treatments?
I get an IV Infusion once a month I am not quite sure of the medication name, I think its tolanocitabe??? I also take Leuflonomide, Calcium and Alendronate.
Is there anything else about yourself that you would like to share?
I was on steroids for over a year after the birth of my son. You can imagine what I looked like. I used to be a skinny girl and I got so big in like 3 months that I didn’t even look like myself. Some of the pictures I sent you I still look a little swollen but I don’t have any when I was really fat. When I was on steroids is when I wanted to hurt myself but the only reason I didn’t was because of my son. It was hard at first and my pregnancy was with no doubt the most painful 8 months of my life. I’ve been through so much and still 4 years after people think it’s whatever, they don’t care to know that it’s serious and very painful to live with RA. I have been through so much and I really love reading the same stories others tell it helps me not feel like I’m completely alone with it in this world. Still now I get depressed and sometimes I wish I could find a cave very far away and just hide for the rest of my life, and when I feel like that I like to be left alone and I hide in my room and just cry because my life just started and RA is a lifetime of pain and suffering.
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!