Comments on: Quality Of Life

By: Lynn Rivers

Lynn Rivers — Thu, 16 Jul 2009 21:32:39 +0000

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!!!

By: Helen

Helen — Thu, 16 Jul 2009 13:45:15 +0000

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!

By: Cathy

Cathy — Thu, 16 Jul 2009 13:24:59 +0000

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.

By: Millicent

Millicent — Thu, 16 Jul 2009 13:11:41 +0000

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.

By: Linda C

Linda C — Thu, 16 Jul 2009 11:58:42 +0000

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.