Cheers To Quality Of Life!

RA Guy Adventures of RA Guy 9 Comments

“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.”

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!

Comments 9

  1. Carla

    No truer words have been spoken. RA is an individual journey and so are the treatments. I think when you’re first diagnosed, you really want someone to tell you what you need to do to “get well”. Unfortunately, there is no such roadmap and we each have to find the best path for our overall (mental as well as physical) health. Thank you for sharing your path with us.

  2. Lisa

    Glad to read this today. I’ve been in remission for a while. Beginning in the fall, I knew things were slipping. Couldn’t get into my rheumy whom I love. Tried prednoisone. Sleep well, eat well and exercise often. Teach yoga. Meditate. Doing all the non-medical stuff that “they” say works. No dice. Now I am in a severe flair, waiting to get in for Orencia. I think I’m just peeved that doing all I could didn’t keep things at bay. And definitely not appreciating all those days things were good. Your blog reminded me of that and gave me a little permission to be mad. For a bit. then it’s time to move on. And wait for Infusion Day. Thanks for writing, RA Guy.

  3. Kate@CookingwithArthur

    Great post. It’s good sometime not to feel like you are walking around rattling with pills, rushing to doctors appointments and cast as a permanent patient. I always feel so naughty when I don’t comply with my doctors medication regime but a little bit of me knows its also important I have control over my own self and get to choose what side-effects I put up with. And anyway, margaritas are highly therapeautic!

  4. Beth

    Thanks for writing. My 16th anniversary was last Thursday and my shot was Friday. My son takes MTX shots and doesn’t drink… cuz he’s 11… I forgot that you can’t drink on MTX. 2 bottles of wine and a late golf cart ride was so much fun for us. I have just been diagnosed and had 1 shot the week before. We needed that wonderful night. It was good to let go and not be mom for a night but to be a teenager on a wicked ride with my beau. Next morning I realized that I did a bad thing…seriously sound like a teenager getting busted. I was reminded about not drinking by a friend…already took my shot and worried most of the day. Ok…I did a NoNo. I’m hoping my liver and my labs won’t show and my Dr won’t give me a stern warning. UGH…..Nice site RA GUY
    Beth… mom to Bruce And fellow blogger

  5. Andrea

    Finding the treatment that will work for you at that moment feels like trying to balance on an ever changing gyroscope. I needed to hear all that you said today, and I’m thankful that you share your experience so honestly. It really helps to know I am not alone!

  6. Jennifer Dye Visscher

    I am so glad you wrote this. As a blogger sharing about Ankylosing Spondylitis I often feel the pressure of “doing it the right way” and what the heck is that anyway? I too have come to the conclusion that I will make the best choices I can but that they are mine and mine alone. If I share about getting Remicade it is because that is what I’ve decided to do and I will tell you how it has impacted my life. I will share that I also believe in diet approached and exercise and being positive. These are the things I do and I share them to help others and to help myself through a life with autoimmune arthritis and I am fine with discussing different views and different approaches I am not fine with people judging or criticizing one another for our personal approach. Goodness, don’t we have enough to deal with! When I feel support and when I give support it increases my quality of life exponentially but negative and critical comments hold no place in my life. I focus on the good and life is so much better. Thanks RA Guy for a great post! Love, Jenna

  7. Cathy

    I loved this post. One of the greatest learning experiences for me has been understanding that we each have our own journey to follow with this disease and with life in general. Following a path that is exactly right for me has helped me grow as a person and has kept me grounded, knowing no one knows me better than myself. So when it all comes down to it, I am the expert on myself. Cheers!

  8. Tanya

    I always appreciate your perspective and providing us with humor, understanding and compassion. I wish others would not be so quick to judge. I try hard not to let my RA get me down but I have been struggling more lately with depression to the point where I cried during my rheumatologist office visit before my last infusion. It is about quality of life and each person has to make that determination. Without these medicines, my life would be completely different and I wouldn’t be able to play and attempt to catch my 3 little boys. I know you and your readers understand and I turn to online support so often because although my family is concerned and supportive when joints flare, they don’t (nor do I want them to) know what it feels like for the simplest things to be impossible to do. Anyway thanks for providing a forum where we can share our successes and our fears and not be judged.

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