About a week ago, I struggled with a decision. I knew in my gut what I should do. I knew what my beloved wanted me to do. Yet, it was still hard to get a grasp on the actual deciding to do it. I found out that a medicine I have been on for 9 months has a rare side effect risk of severe and permanent visual field loss. The eye doctor was cavalier about it saying "oh, if I had rheumatoid arthritis, I'd take it." Not bothering to read my chart to see that I, in fact, don't have RA. Not bothering to know what I have. Not taking any time to care about what the risk means to me. Just explaining callously that by the time they see damage in an exam or I see problems in my vision, it will be irreversible and untreatable damage which could get worse whether I stop the drug or not. Certainly, the longer I'm on the drug, the higher the risk just because of frequency of incidence in my body. So, I decided to go off of it. I can't tell that it has helped me in these 9 months. That is the really hard part about this disease. It is hard to measure. I do know that I came out of last winter's flare after I went on it, but likely, I might have done anyway. Also, my beloved reminded me, summer of 2013 was far better for me than this summer. We were geocaching every Saturday for at least 6 hours a day. This year, I only went once so far, which was 2 weeks ago. So, in general, I know I am not better than I have been. I know things are worse, or harder, if you will. The decision struggle is just in the dashed hope. I embraced trying this medicine after not having tried any for some years. It didn't pan out. It is unlikely that I will suffer any ocular damage from only being on it 9 months. Except for the disappointment. But, I delight in the visual world. For me to lose large chunks of my field of vision including everything else I have lost, would be too much. So now, I pray some young scientist comes up with the new, next treatment for me. Preferably chemical free, but not necessarily.
The irony is this. I have had better days since I went off of it 5 days ago. I didn't know how best to stop, so a call went out to my rheumatologist. The nurse returned the call and I informed her of my decision, my reasons, and my question as to how to properly stop. Cold turkey? Titrate down? Never got another call back about that so, it has been a cold turkey situation and it has been fine. In fact, better than fine. The last 2 days, it has stormed and rained here pretty consistently. And, wait for it, I have felt ok. (Two sentences which have never been written together.) It has been remarkable. I even had to go out to an appointment yesterday, and I did fine. Yes, I was uncomfortable, but, not in the same way I can remember being during chilly rainy weather. Makes me go hmmmmm.........
Grateful to even have the opportunity and the funds to try another medicine. Grateful to be able to make the decision to go off of it because of preference rather than finance or intolerance. Grateful that I did not plummet into a black hole of symptoms which would then make me question the decision. Grateful.
Have happy days.
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