As my wrists just aren't up to a cartoon today, I'm going to post about something I've been thinking about lately: pharmacophobia, the fear of medication. Read any forum, list or blog on RA and a recurring theme is the tough decision of whether or not to take the nasty drugs needed to slow down or stop the body's attack upon itself. It all boils down to fear, and for good reason. Some of the listed side-effects of these drugs read like a horror story. However, the fear is also fed (rather ironically) by the drug companies themselves and their advertising, or at least the part of their advertising wherein they are required to list every single thing that could go wrong when taking the drug, and these ads are prevalent on TV and in magazines. Now, to illustrate my point, I went through a recent issue of a national arthritis magazine, which logically is going to have a lot of such ads; I just wasn't expecting as many as I found. Here are the findings:
In a magazine of 72 pages, a full 35% was taken up by drug ads and their pages of side effects and warnings. I didn't count any ads for braces, mobility aids, adaptive equipment, eating programs or supplements. Inevitably, these drug ads follow a pattern: a full page showing smiling people doing activities (I counted 14 wildly grinning folk and a whole crowd of smiling onlookers). Message: happiness will ensue when taking this drug. But then come the pages of extremely small print, and this is where fear can set in: everything from a risk of serious infections like TB to a higher risk of cancer depending on the drug...seriously; everything except spontaneous combustion, but that might have been in there, too. Hmmm...an RA sufferer must really do their research and find out just what the side-effect probability is, then compare this to the inevitable if one doesn't take the drug, which is further joint damage, complete impairment and the probable involvement of inner organs including the heart.
For me, it has become a matter of quality over quantity. I want to live my life with a reasonable degree of mobility and painlessness. I say reasonable because I know I will never be my old "normal" again, but my new "normal" wants to be able to walk, to drive, to be able to write and draw and to be able to perform everyday tasks like chopping veggies, getting things out of the fridge, putting on my socks or a sweater or putting my hair in a ponytail without assistance and without a lot of pain. Maybe it's too much to ask, but that's my goal. For this to be a reality I know I'm going to have to go down that road where the quantity of time I have left might be shortened a bit by improving the quality. It boils down to living a fulfilling life or just taking up space.
Right now I'm completely in limbo. I literally take each day as it comes. I seldom know what day of the week it is, just that it's another day, trying to be patient as I wait to see if this first-line drug is going to help me, trying to deal with pain and lethargy, taking up space....