“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!