Eager to Meet With Palliative Care Folks

Surrender… it’s really not the same as giving up.   I don’t want any more diagnoses, specialists, medications, tests, procedures, etc.   It just isn’t important anymore.  I don’t have any need to push myself beyond the limits of “quality vs. quantity”, just to have a longer shelf life.  There are so many things worse than dying (and I’m not dying).   I need to be able to focus on ANYTHING that isn’t related to my health.   Especially when the doctors don’t want to hear what is concerning ME about any symptoms.  Why should I trust anyone who won’t include me in my own care?   I just want to be heard.  That’s it.  To feel like my perspective on MY LIFE matters.  And here, it mostly doesn’t with the doctors I’ve seen this year.   I’ll be glad to see 2019.  Not sure I could take another 2018.

Doctors don’t get to dictate my life.  I understand that they have to cover their butts (and that is what it is, as compassion is never “expected”; I go into most appointments in fear here).   I understand that they want various tests, and being an RN for 33 years, understand the rationale).  That is their ‘go to’ response to things- without input from the patient (me)  SO often recently.  It’s not about the entire person, or even any other body part than what they are paid to address.  I’m not a collection of parts… I am a whole organism, and when I am not allowed to come into an appointment I scheduled to show the doc something that COULD kill me quite easily if he doesn’t know about it, I don’t trust that “medical care provider”.  There is no way I can trust that type of “doctor”.  Mostly, it was a devastating blow, in my hopes to get some relief from the gallstones.  But I’m done. It’s time to focus on my emotional well-being…. and dismissive, patient-deaf doctors (and one nurse practitioner in the GI practice) are NEVER going to be part of that.  This year has shown me that over and over.  I won’t be their victim.

I’m not going to keep wasting time on a losing battle- and it’s not with my body as much as it is the “caliber” of physician an ‘armpit city’ attracts .   Now, there are some great folks here… but it takes a lot more time to find them than it should.  They shouldn’t be the exception. So, I’m expecting a call from the Palliative Care team associated with my doctor’s medical group (couldn’t get in to the one associated with the hospital I prefer, but can transfer later if I want to; my former high school classmate and primary doc is the medical director there).  I want to focus on what’s left that is good.  I want to focus on the living part of life- and not the constant troubleshooting, tests, specialists out the wazoo, etc.   I want to focus on symptom management and stress relief.  I NEED that.   And maybe if I have someone helping out with communication, I will once again be part of my own healthcare equation in the eyes of the tunnel-visioned doctors here.  I need that, too.  Palliative care is perfect… I’m not terminal, and palliative looks at anyone with chronic life-altering illnesses, to help improve quality of life.

The medical cannabis is a big part of all of this.  Without ‘stoner’ psychoactive effects (because of the dosing), the positive effects have gone beyond my initial hopes.  It has helped things I didn’t know it would (and most of that is because of the CBD, and not the THC- though they do work well together).  CBD is the ‘antidote’ for too much THC.   The few times I’ve overshot the dose, I’ve felt horrible in that “wonky head” feeling, and have no idea how that could ever be “recreational” or fun.  I hated it.  But the health benefits from the medical cannabis have been so worth it.   I never thought this ol’ detox RN would ever even try THC… but without having to smoke it, it has been the best option for numerous chronic disorders.   And, I’ve been able to get off of many medications that were NOT making a positive difference, or had such negative side effects.

So how is this related to surrender?   I’m doing what feels best given my circumstances, and I’m picking my battles according to what I NEED- not what a doctor without all of the information dictates.  I have no interest in dying- but I also know that being dependent and in need of 24/7 care is not something I’d agree to very easily, if at all.  I’ve worked in nursing homes, head injury rehab, and other “institutional residential” types of healthcare- and it’s not a life.  It’s giving in to the “life” so many others determine for the patient/client/resident.  Which means I’m irrelevant again.  “Flip, flop, fold, feed, and fluff”… that group of patients who can do nothing for themselves.  I loved being able to care for them, but  I don’t want to go out that way.  So, surrender, since making the decision to go on palliative care feels right.  It’s the most at peace I’ve been in a long time.  Grieving my dad’s death is still a complicating and major factor in my life, but I don’t have to ever get bad news from procedures I don’t want, and distances I can’t travel (making me “non-compliant” to those who don’t see the whole picture).   This is OK.  In fact, it’s good !   I’ll still take care of the various daily tasks that I have to in order to preserve what I have left  (or try to), like blood sugar testing, insulin, etc…. but I will also keep trying to get off of any medications that the medical cannabis allows me to discontinue.

I won’t NOT get temporary, acute things treated (bronchitis, or whatnot).  But no more screening for things that I will not get treated.  Enough is enough.   It’s time to focus on the things that make life worth living, not getting MORE  news that something else is falling apart.  That in and of itself is extremely stressful.  I’m not waiting for anymore shoes to drop.  In my head, I’ll be barefoot. ❤

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