What made me even more motivated to do all of this is a situation I’m in with my pain management doctor. Words can’t express how thankful I am for his help, but the office is crowded, and sometimes they are more interested in swiftness than quality time. You’d think adequate communication was fairly important when discussing things such as burning away your nerves as a type of “treatment”?
The conversation has always been, We’ll try to numb the nerve, then if it works, we’ll burn it. Never once was I asked how I’d feel about this, or if I wanted to do it. So much so, that I nearly forgot to contemplate it, myself!
Because of the side effects I got just from the “trial” shot, doing something semi-permanent like radiofrequency ablation–or radio frequency nerve lesioning as it’s also called–would probably result in the same bizarre side effects, only forever: Never being able to recognize myself in the mirror, and never being able to keep my balance even with my eyes OPEN.
Does that sound AT ALL how I want to spend what could be my last stretch of life able to truly function? NO. I still don’t know why those odd side-effects accompanied my injection, but that’s what happened.
They were very willing to work with me when I discussed how I absolutely cannot have the steroids that usually accompany the nerve block/make it last longer, but I’ve still had a lot of anxiety about discussing how I don’t want to obliterate one of my nerves in an attempt at “relief.” That’s the exact opposite of what I view as self-care and treating my body kindly. But I don’t want to seem like I’m not wanting to help myself, something everyone with chronic illness has been accused of at least once but more likely a dozen times.
I also don’t want to come across as just wanting pills and nothing else, and get some unwanted reputation as a pill-seeker. As much as pain management advocacy groups make it sound like everyone has the right to pain control, I’m sorry, but being mislabeled still happens. A lot. Part of the reason it took me so long to seek pain management in the first place is because in the past I was always denied at the ER: They didn’t believe me and unjustly assumed I was only there for drugs because my conditions (Fibromyalgia, at the time) were so poorly understood. I know my anxiety has stemmed from all this, because what if my current doctors also don’t understand? But I’m at the point now where I’m too frustrated with the fact that my opinion over what I want to do with my body was never even requested, so they will either understand, or I’ll have to find a new clinic. We have to talk about how I do not want to do that to my body.
My point in this two-part entry, is this:
You don’t have to do what’s “expected” of you, when it comes to your health. Whether that concerns end of life care, medical treatments, or prescription options: If you want them, and you think they’re worth the risk–and they all have risks–then try to get them. But don’t feel pressured to get them just because someone else thinks it’s right, because your doctor thinks it’s right, or because other people wish they could have it, if it’s not really what YOU want for YOUR body and YOUR life.
For a long time I even felt guilt over turning down my Lyme etc. treatment because there are people who want to get treatment, that can’t… But that doesn’t do anyone any good at all. It doesn’t make sense to kill myself with antibiotics just because someone else wishes they had any antibiotics at all.
And don’t forget to consider what it means for you in the long run. Many people want to stay around for as long as possible, no matter what the cost; for their children, spouse, best friend, others who need them, without stopping to think of how those emotionally-charged decisions are actually going to affect their life. It’s worth the extra thought.
Are they still getting “you” if your attempts to stay alive rob you of your body and mind? Is it in the best interest of your values and morals? And are your morals and values in your best interest?
At what point is prolonging your being alive with the aid of modern medicine only going to promote your suffering?
♥ a rainbow at night