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. ❤

Four Months Using MEDICAL Cannabis… It’s About the CBD, Folks !!

OK, so it’s been 4 months since I’ve had my medical cannabis card.  I’m still learning, but have been amazed at the unexpected effects of using CBD and THC.   I’m now getting into terpenes, which is a totally different post for the future.  Chemistry was never my ‘thing’, but I’m having to adjust a bit with that !!

I actually have this poster in front of my gas fireplace in my living room !! No hiding it !

Some of this might get into the TMI territory- and I’m OK with that if it helps someone else.  I’ve written before about my battles with eating disorders.  I was a starving laxative abuser.  I didn’t binge much, but if “forced” to eat a ‘normal’ meal  with others, I’d load up on laxatives BEFORE eating, so things moved more quickly.  Long term effect of that?   Can’t poo without laxatives. At all.  Prior to using the CBD in particular, I was taking SIX stool softeners and SIX stool softeners with stimulant laxative EVERY DAY.   I’m now down to 2 stool softeners a day.  NO laxatives !!  That is a minor miracle, considering I’d had to take the softener w/laxative since 1995 (last bad relapse).  That’s right.  23 years.  Part of that is also due to being able to stop some of the medications that are constipating (opiates, anticonvulsants, nausea meds, etc).   But prior to being on any of those, I was taking three softeners w/laxative daily.   Something changed- and all that changed was  adding medical cannabis products- especially the CBD.

CBD oils are not all the same.  You need one with a good track record.  I like Charlotte’s Web.  Most of the time, I use the capsules.  I do have the oil for edibles, or sublingual use for faster onset of action.  CBD is the base of my medical cannabis ‘program’.  That might disappoint those who hope for using more  mind-bending THC as their primary medication.  But THC is more of an enhancer.  I don’t like the feeling of having too much THC (and that amount is different for everyone).  This is a core difference between medical and recreational cannabis.  I don’t find anything “recreational” about it.    This is about a better quality of life….not escaping it.

Since starting the CBD and THC,  my psoriasis is cleared up by about %95.  That was unexpected, and amazing after years of prescription and over the counter shampoos, creams, solutions, etc.   I’ve also been able to completely get off of carbamazepine (Tegretol), cut the gabapentin (Neurontin) by %60, and subsequently stop or reduce the medications and supplements to deal with the side effects of those meds (especially the carbamazepine).

Cannabis is great for chronic conditions, and some acute symptoms (nausea).  It’s not optimal for acute pain, as I found out when I broke my ankle a month ago.  I’ve needed opiates a few times this month (6 doses) to allow me to sleep with the acute pain.  But that’s still very little compared to most opiate consumption after something like a broken weight-bearing bone.  I was disappointed about taking the opiates, but I also needed to be practical.  Since I’ve never been addicted to drugs or alcohol, I have some leeway to use opiates, but the goal is not to use them.  It had been quite a while since I’d used the Norco 10/325, and the first dose was a doozy.  I could definitely feel it (not good).   After that, I split the pill in half.


As I mentioned, my next ‘thing’ to figure out is how to use the terpenes, which are compounds in virtually every plant.  They have medicinal benefits, and I want to learn how to use them.  I’ll post more as I learn more, and have a chance to use them.

So, there’s always more to learn, but it’s been an overall VERY good experience.   My primary form of cannabis is capsules, but I also use tablets, mints, candy/chocolate, other edibles, concentrates, occasional vaping, and occasional dry herb vaping.   I don’t smoke. No combustion = no products of combustion.  Vaping creates steam, so MUCH less likely to have toxins.  To me, smoked cannabis absolutely reeks, and I don’t want to expose my dogs to that (or get them stoned), bug the neighbors, or stink up my house.   I also have distillates of CBD to use with cooking, should I ever get some culinary bug after my ankle heals.  Watch “Bong Apetit” on Viceland if you want some great ganja cooking tips.

By getting the small dose products, it’s easier to titrate the THC dose. That’s one reason I love the Ascend THC tablets- they’re only 2.5mg each, and can be split if need be (I use a whole one).

These come in different ratios of CBD:THC… I like the 2:1. Ends up being about 12-14mg of CBD and 6-7mg THC in each capsule.

2.5mg THC tablets.

SO, if you aren’t getting the benefits from medical cannabis that you hoped for, I’d encourage you to take a look at how much CBD you’re using.   An example of the doses I use per day (and it is different for everyone, and you ALWAYS start low and go slow when increasing doses !!) :   CBD is about 100-120mg.  THC is about 30-40 mg.  But CBD is da bomb !!

The Ongoing Journey With Medical Cannabis

I’ve had my medical cannabis card for 6.5 weeks now.   It’s been a very educational and hopeful thing to find a natural product that makes such positive changes.  For so long, I have been tolerating life.   Now I have glimpses of actually having a better life (at least with the stuff I am taking the cannabis for).   It hasn’t been all perfect (takes some time to get the dosing right), but that’s operator error and inexperience).    For years, I didn’t believe that marijuana could have anything positive to give to the world, and wow… was I ever wrong.  

I had been cutting down one of my seizure meds because of kidney and liver issues, but had only gotten down to %50 of my usual dose, because of wide mood swings with getting off of the stuff (I’d dealt with it in the past, so knew to go slow).  With the medical cannabis, I’m off of it completely, and have cut down another anticonvulsant by %60- with no known change in the frequency of seizures (they are nocturnal, so I only know I’ve had seizures if I wake  up in the morning with the inside of my mouth chewed up).   I have only taken opiates two times in 6 1/2 weeks.  That’s it.  Before the medical cannabis, it was 3-5 days a week; the rest of the time, I just put up with the pain to avoid any sort of physical dependence or tolerance.   I’ve had chronic pain since 1995- so 23 years- and while I don’t expect to be pain free (gotta keep expectations reasonable), there has been improvement.   Also,  I am definitely  sleeping better and my mood isn’t as wonky. 

The sensation of using cannabis isn’t what I expected.  For medical cannabis patients, the goal is to find the dose that takes care of the symptoms without altering psychoactivity.  Getting ‘stoned’ is NOT the goal of medical cannabis.  It’s more like a ‘thing’ that I didn’t know I was missing, and suddenly feeling like life is more good than miserable.   With CBD oil (I use capsules and vaping more than the sublingual oil, but I have used it that way), I do feel a mild sleepiness, and I take the larger of two daily doses around supper time, so that I’m ready for bed at a decent hour.   With THC, the doses are very small.   CBD is the cornerstone of cannabis pain management.   THC is the enhancer.

Depending on the strain of cannabis, the effects are either more sedating (indica strains) or uplifting (sativa strains).  It’s %100 possible to customize pain relief with the level of relaxation desired, to make daily life less interrupted by the symptoms being medicated- or the side effects of the ‘treatment’.  With traditional pharmaceuticals, fatigue and sedation were the only options.

I have had a couple of times when I overshot the dose (homemade edibles usually), and the feeling of being ‘buzzed’ is not pleasant to me.   There is a literal, physical ‘buzzing’ sensation that isn’t painful, but noticeable.   The ability to form memories is altered- though there isn’t a sensation of being messed up.   It’s a very “aware” feeling, and initially it scared me- but it  is fairly easy to take care of with some CBD (I usually vape when I’m trying to counteract any ‘bad’ THC effects, as it acts faster than edibles).   But there is also a very relaxed feeling that is welcome after days when pain is really lousy (i.e. taking trash cans to curb, laundry, etc).   I’ve decided to buy most of my edibles because the consistency in dosing is better.

I don’t smoke.  Anything.   I used to smoke regular cigarettes, and did try a couple of puffs from a joint, but didn’t like the coughing fit that seems to be fairly standard for smoking the stuff.  I like vaping (steam, not  smoke), capsules (yep, just regular capsules), edibles ( gummies and chocolate, and an infused granola bar), sublingual sprays, concentrates and RSOs,  making my own topicals, and some homemade edibles (baked goods- easier to get the dose more consistent, at least when I’m making stuff).    I use cannabis 3-4 times a day; morning,  early afternoon, suppertime, and just before going to bed.  I don’t feel ‘altered’ with the dose that is working now.   There is no urge to jump in the car and drive all goofy.  There haven’t been a bunch of ‘munchies attacks’ (thank GOD).

Initially, it’s not cheap to use medical cannabis, since there is so much trial and error that goes on with finding the strains and doses that work the best.   I recommend saving up money (gotta take cash to the dispensary) while waiting for the medical card to show up (took me 113 days to get mine).

Bottom line:  this prior anti-weed snob is SO thankful for something that works so well, has few side effects (and those are dose dependent), and WORKS for so many things.  It’s not the evil herb that I was preached to about as a kid.   It’s not about being stoned, like I saw when I worked as a detox RN.  It’s about getting better, and having a better quality of life.   It offers hope.   It very well could be a lifesaver, as there is only so much constant pain a person can take.  I had a doctor tell me that pain doesn’t kill anybody.  Well, maybe not physiologically, but emotionally and mentally, it’s an absolute life-sucker.   I’m getting a bit of life back.