Advance Directives and Treatment Planning, Part 2 of 2: It’s YOUR Body and These Are YOUR Choices

[ estimated reading time: 3 mins 29 sec ]
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?

Cellphone photo #10
“I will live. we all one day will. but where’s the difference between life and living?” (Photo and text credit: Leni Tuchsen)

At what point is prolonging your being alive with the aid of modern medicine only going to promote your suffering?

a rainbow at night

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9 thoughts on “Advance Directives and Treatment Planning, Part 2 of 2: It’s YOUR Body and These Are YOUR Choices

  1. Way to go! I wish you a lot of success!

    I have bartonella, west nile, barbesia and lyme’s. Lots of pain, here, too.

    I am going to a naturopath. She said I should be done with those four in a month.

    Then we go after all the damage they are causing. All my body systems are not working.

    God bless you and all who suffer. Remember to read Job in the Bible, it is a great comfort.

    Bootstrap

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  2. Not having to do what doctors expect of you is such a revolutionary idea to most people. Especially people who have never been ill and not gotten better.

    I remember being in my college health clinic and asking to see another doctor when one told me the sinus issues I was describing (and had been to an ENT for who did CAT scans) were not possible. The next doctor listened to me, explained to the other doctor I was indeed correct, and gave me my damn antibiotics.

    I can think of many doctors who were annoyed at my bringing in peer reviewed journal articles when they’d tell me a certain treatment route (or lack of a treatment) was not an option…

    Then there are the good ones who respect our decision to do what we wish with out own bodies. :) I hang on to them with all of my might.

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  3. One of the hardest but most valuable lessons I have ever had to learn is that doctors don’t always know best and I don’t always have to do what they tell me too. It is one of the first things I now share with anyone that is newly diagnosed.

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  4. Thank you, i needed to hear that.
    I’m facing an invasive(for me) medical procedure. The spinal tap. This requires lying on your back for 24 h. This is something I can not do. The inflammation in my spinal cord is so severe that even just lying 1 minute on my back causes me horrible pain. If the spinal tap was a life and death emergency procedure but it s not. It is mainly done for research purposes.
    I had a difficult time deciding how I was politely going to say no. You gave me the courage to do so. Just because the want to put me through this for their reasons oes not mean I have to agree with them.
    It is my body, I know it best, I know how it feels, they don’t, if they knew they would not even suggest such a procedure. They don’t get to decide. I do.

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  5. There is a website called : http://www.caringinfo.org. My husband and I did our estate planning in 1997 and filled out advanced directives then. We are revising them now based on my failing health.
    I don’t know if you are in the US or not, but that website allows you to print out an advanced directive that conforms to whatever state you live in.
    You are also allowed to change the wording in the advanced directive (cross out, modify,etc.) to make it conform to your wishes. You may appoint a health care representative to make decisions for you if you can’t. BUT you can also place limits on what or how long or under what circumstances they can make decisions. In lieu of their decision making responsibilities, YOUR wishes must be carried out.
    I have my advanced care directive in my room at all times. It has many “alterations” that I made , signed, and had notarized and witnessed. I have asked for absolutely no interventions whatsoever except for pain meds to keep me comfortable until I pass.
    I don’t know what the rules may be for those outside the US, but the directives on the website are legal for each state in the US.

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