Quality Of Life

RA Guy Adventures of RA Guy 5 Comments

“If you don’t set a baseline standard for what you’ll accept in life, you’ll find it’s easy to slip into behaviors and attitudes or a quality of life that’s far below what you deserve.” -Anthony Robbins

Tree LifeSoon after Rheumatoid Arthritis Guy was diagnosed with rheumatoid arthritis years ago, he was introduced to a concept that was both normal and foreign at the same time. What I am referring to is Qol, or quality of life.

Whether I was researching and reading articles on line or responding to questions from my rheumatologist during my monthly visit, this one phrase continued to appear – over and over.

I was continually being told that one of the most important factors of my treatment plan was the need to maintain and improve my quality of life. The funny thing is, no one ever defined for me what this actually meant. Sure, I got asked lots of questions about the duration of my morning stiffness, about the number of joints that were currently affected, and the severity of my pain…but the conversation never seemed to move much beyond these terms.

I haven’t written much about the details of my first year of living with rheumatoid arthritis, partly because the treatment plan that I was on at the time caused so many problems that it actually made things worse. This was before the point where I realized that it was I who needed to take control of my comprehensive treatment plan, and that I was the only person who had the final choice as to what medicines I should introduce and not introduce into my body.

The primary component of my treatment plan was methrotrexate. From the start, it was obvious to me that my body was rejecting this medicine. Since I was new to the whole RA thing, though, I placed my trust in my doctor and continued to heed my rheumatologist’s advice that I give my treatment plan a little more time, that things would eventually get better.

Month after month passed. I basically crossed two days off my calendar each week. Both the day I took my methrotrexate and the day after were a complete loss – so much so that I had to move my dosage day to Saturday morning in order to not interfere with my work obligations. Just like that, my weekends disappeared completely.

During these two days, I could never be more than a few seconds from a bathroom. I had to schedule my travel around this cycle, as the last thing I could dare to do on these days was be on an airplane. On top of the stomach problems, the headaches and nausea were so severe that I couldn’t do much beyond lay in bed and pass the hours.

The other five days of the week were slightly better, but not by much. Just as I reached a point on Friday where I once again felt somewhat fine, I jumped back into the whole routine the next morning when I took my weekly dose of methrotrexate.

Each month, I begged my rheumatologist to please change my treatment, The response I received was always the same. Tough it out, things will get better.

This went on for an entire year. 12 months. 2 days lost each week for 52 weeks. The final price pain on my end: 104 days. Disappeared. And I was not one iota better than when I started. In fact, I was worse.

At I reached my one year anniversary, I asked myself: “What do I want my quality of life to be?” The answers that I came up with had absolutely nothing to do with any of the questions that I had been asked during the preceding year.

I wanted to have my weekends back. I was in my early 30’s, and it just didn’t seem right that my Saturdays and Sundays were being taken away from me.

I wanted to be able to have a mixed drink, or a beer, whenever I felt like it. I was tired of mixing grape juice with mineral water and pretending it was wine. I was tired of only being able to have a sip of champagne during holiday toasts.

I wanted the know peace that comes with not having to constantly be aware of the location of the nearest rest room. I wanted to break the tether to the rest room that I had been living with so long.

And above all I was tired of going, month after month, to a rheumatologist who refused to listen to my concerns and complaints. I wanted a rheumatologist who would work with me, and not against me.

So, I decided that my quality of life was indeed important to me – and that I had every right to define for myself what my quality of life should be.

I stopped taking methrotrexate, implemented dietary changes, and started taking various supplements. (By the way, I also stopped going to that rheumatologist.)

And you know what? I improved almost over night. My rheumatoid arthritis went into complete remission for more than an entire year. I was happier than ever, and every one around me commented on my sudden improvement.

Only by taking ownership of my quality of life was I was able to ensure that it did indeed improve. This was one of the biggest lessons that I have learned on my journey with rheumatoid arthritis, and is something that I will never forget.

How do you define quality of life?

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy

Comments 5

  1. Linda C

    Good morning,
    QoL is something I wish was discussed and practised more. It is sometimes referred to for the elderly and/or terminal patients, like cancer victims. Sometimes we cannot control our lives, but we can our attitudes.

    As for the methotrexate, that stuff almost killed me. I refuse to take any med that has a bad affect.

  2. Millicent

    QOL—my best guess at my definition: living day to day with a sense of peace & calm; staying in the moment; cherishing the “little” things. I guess that would be my ideal definition.

  3. Cathy

    I must have been one of the lucky ones because Methotrexate didn’t make me feel sick at all. It didn’t make me feel better either, but that is another story.

    I too believe that once we trust that we ourselves are the final decision makers in our health, life gets better. I believe we have an innate ability to know what is right for ourselves but we have somehow stopped trusting that ability. But, when it comes back, it leads us to where we need to be. This RA journey has taken me to many places and although it has been a tough road, it has also been a good road.

  4. Helen

    I started methotrexate when I was 11 after 9 years of taking only anti-inflammatories. It made me sick at first – for about 2 weeks, all I could eat were soda crackers – but since then I’ve been ok. Sometimes it seems crazy that I’ve been taking it for almost 15 years, though! I get my regular bloodwork, though, and I am doing well so far.

    Quality of Life is such an important issue for a rheumatologist to recognize. I’ve been very lucky that mine seems to trust my intelligence enough to listen when I say something is or isn’t working. Currently, I really believe my QoL (indeed, my functionality) depends mostly on Enbrel. Sometimes it’s scary that this one drug is so important in my life, but I use the reasonable fitness it gives me to make sure I exercise and stay healthy in other ways. I guess that’s all we can do!

  5. Lynn Rivers

    Your first year experience is so similar to mine! I had the same issues except it was diarrhoea not nausea that kept me within steps of a washroom for two days. I two re-arranged the days I took my dose so my two days off were recuperating. I only stuck with it for 9 months before I said “forget this, its not helping the pain anyways”. It didn’t go over well with my Rhuemy but I stuck to my guns and he was forced to change my treatment. I also asked my GP for another referral but was refused… apparently there aren’t that many of them in my part of the world. Of the ones my doctor could pick from, he was the ‘best’. Even if his beside manner needs some work. He even had the nerve to say to me “why don’t you stick to your job as a patient (which translates to ‘do what your told’) and I’ll do my job as doctor (which means ‘tell me what to do’)”… can you beleive that!

    “…my quality of life was indeed important to me – and that I had every right to define for myself what my quality of life should be.”

    You’re darn right… its our right!!!

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