Relief … Date Set for Palliative Care Assessment

It’s amazing the amount of power that ‘choice’ offers.  For decades, I’ve been fighting every medical diagnosis and disaster, and in the end, that is what my life has become. I just wait for the next shoe to drop…and that is exhausting.   With the chaos of trying to get my gallbladder removed, and the negligent degree to which the doctors didn’t hear a word I said (or cancelled an appointment, so I couldn’t tell them), I’m done dealing with “professionals” who don’t have the basic assessment skill of simply listening.  On August 6th, I’ll officially have more options.  With “palliative” listed, it will help so I’m not seen as non-compliant.  The armpit of medical science that is this town will have far less control over what does or does NOT happen to this body.  There’s a person attached to it that is tired of being irrelevant in my own care.

With palliative, I can get things diagnosed and/or treated- or not.  I don’t ever have to have tests for more bad news.  It’s unlikely I’d go through with much in the way of treatment with no dad in the picture.  So why spend any more time wondering, worrying, and waiting?  It doesn’t make sense anymore.  And with that comes a bit of calm.   I’ve also tried some different types of medical cannabis, which is acceptable in palliative care.   If nothing else, I can get some sleep at night.   But knowing that I can ditch a bunch of doctors, and live life on MY terms is empowering, and gives me a bit of hope in a city where ‘hope’ and ‘medical care’ are seldom associated.

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. ❤

Going on Palliative Care

And the biggest reason is that I can’t get specialists to listen, and am no longer willing to put this much energy into trying to maintain as much as I can of what I have left that works.   This week, I wasn’t even allowed to come to an appointment with MY concerns,.  I own the body.  I’ve been in it for nearly 55 years.  I get to have a say in my own health.  YOU do not have the final word- ESPECIALLY if you can’t bring yourself to just listen, or LET me come in to my scheduled appointment.  Help me see your view (I understand the surgeon’s need to know more- but it’s not about those two tests that are not needed- they were done, with no current changes in how that is going- there is a diagnosis; what is going on now is different).   That doesn’t seem to be part of medical practice in many of the specialists offices I’ve been in this year alone,  I’m done with the medical shit show in Northern IL.

I’m “complicated” on a good day.  Starting in January of this year, I started having some symptoms suggestive of gallbladder disease.  I got an ultrasound ordered by my primary doc, and yup. Big gallstones, but not inflamed.  OK.  Off to surgeon.  Saw him, then had some stuff come up with my kidneys, and because of nausea, I’d become dehydrated- so had to postpone gallbladder surgery.  Off to GI doc, whose nurse practitioner became absolutely rabid when I APOLOGIZED for coming across bitchy (I felt really lousy that day).  She went off on EVERYTHING I said after that, so I guess she assumed I was there for an old problem and proceeded to order tests already done TWO YEARS ago, for something that hadn’t changed, and it all seemed very punitive.  She didn’t even let me finish. The constant berating shut me down.  She chewed me out for not seeing the nephrology guy, when I’d been told they would call me.  Ended up the order got messed up, so they didn’t know to call- NOT MY FAULT.  Finally got kidney issues figured out after weeks of putting a tube in my own nose into my stomach to help get more fluids in (but not on good reflux meds because of kidney issues, so not flawless).  Then I broke my ankle on June 2nd.  I’m still healing from that.  I’m pretty sure my 5th metatarsal (toe) got whacked pretty well, also.

On Wednesday of this week, I was supposed to go see the surgeon again per MY request.  They called three hours before the appointment to tell me that the surgeon wouldn’t see me until I had the GI tests done.  I’d waited for weeks for that appointment. The nurse wouldn’t even let me explain MY side of things, and that I wanted the appointment to show the doc a possible epigastric hernia in case HE wanted to think for himself and order a test to see what was going on structurally…. nothing down my throat or inside of my stomach has changed, symptom wise, in two years.  A CT could be useful- if that showed something in my stomach, then of course I’d agree to repeat the EGD.  I also can’t do the follow-up that the GI folks wanted before because of transportation issues (my dad died- he was my transportation), so why do it all again, just to not be able to follow-up again?  Makes no sense to me.

I’ve been an RN for 33 years (disabled, but I keep my license and CEUs current).  I’m not stupid. But I am very frustrated.  I  absolutely understand the surgeon wanting to know what he was getting into, but I’d think that actually SEEING what I was talking about at the appointment I’d waited weeks for would have been useful.   I won’t see him again.  I was gutted after that phone call (no pun intended).   I was trying to be responsible by letting him see what was going on.  It hadn’t been as pronounced when I’d seen him before.  While spending weeks mostly in bed with my foot up, I’ve had to get up and down more (bathroom closer  in bedroom vs. living room), and that’s when it really popped up.  It’s been there before- but now it’s just weird.

If I have to fight this hard just to have a physician LISTEN, then I’m done.  I’m not in any shape to move somewhere with better medical care, and I think if I had to leave this house (last part of my parents left), I’d just die anyway.   No more specialists (except one required by Medicare for CPAP supplies). No more procedures. No more consultations.  Only simple lab work.  No more bad news. No more assholes.   No more being berated by unprofessional “professionals”.   No more having to fight to stay as healthy as possible.  I’ll be compliant with what I agree to with the palliative team, but otherwise, the less I have to have anything to do with the medical community in Rockford, IL, the better.

Thank GOD for the nursing care manager at my primary doc’s office.  She has been exceptional when all of this overwhelming stuff just becomes so crazy that I just fall apart. I’m still having issues with grieving my dad’s death.  The health issues, and never knowing what else is falling apart is exhausting.  I’m doing the best I can, but there are a lot of days when I’m really struggling.  Laura has been wonderful.  And she LISTENS.  If I feel heard, I can settle down pretty well.  None of the specialists even seem to think that there might be a lot more going on in someone’s life than the issue they seek help for.

Palliative care focuses on comfort, stress relief, and symptom control.  People don’t have to be terminally ill.  It’s also for life-altering chronic disorders… and I have several.   I can have things fixed if I want to (unlike hospice), but I really don’t see the point.  I don’t want to know if anything new is messed up. No more Pap smears or mammograms- I won’t go through cancer treatment again.    I. Am. Done.   Thankfully, my primary doc and case manager have been amazing.   Everyone in that office has been great. And, the doc is leaving, so will have to see a new one (gotta have a primary doc), but have some continuity going on there, and with the palliative folks getting on board, that should also help with the transition.

NOTE to Doctors who only see one body part:  You are part of the problem for any patient you see- not just me !   You need to talk to patients to get the whole picture before writing them off.  That other doctor whose ‘side’ you cling to has spent 10 minutes with me.  How is that very useful?   If you don’t HEAR patients, what good are you?   How much of your life do you expend just by listening? I’m guessing not much. In the meantime, shutting a patient down matters in every future healthcare decision they make. Nobody wants to put themselves in a painful situation on purpose- and YOU are a painful situation.  And any other medical people who are in contact with actual humans, take the high road if a patient is having a hard time.  It’s not personal (but can get there very quickly).  If you’ve only had 5 years of being an RN, and are a nurse practitioner, that sounds like you have ZIPPO clinical experience with more than one patient’s ‘stuff’ at a time.  It shows.  If you didn’t get laid last night, don’t take it out on me.   If your life sucks, don’t take it out on me.   And don’t blow off the patient’s ENTIRE history.  It is all connected.   Be civil.  Not cruel.

This is what you ignore, just with me:  psoriasis (autoimmune), nocturnal seizures, degenerative disc disease, degenerative joint disease (shoulders, hips, knees), dysautonomia, POTS, diabetes, GERD, history of multiple pulmonary emboli (at one time), gastro-esophageal outlet obstruction, acute kidney injury from dehydration (repeatedly), chronic pain from various causes, arthritis, history of leukemia,  peripheral neuropathy, carpal tunnel (bilateral),  progressive sensory neuropathy, severe heat intolerance, limited mobility, fibromyalgia,  limited ambulatory ‘distance’, bone spurs (neck, shoulders, hips, thoracic spine, lumbar spine), abdominal hernia of some sort (reminds me of ventral hernia I’d seen in the early 90s in a nursing home patient, but it’s a bit higher), sleep apnea,  and I’m sure I’m forgetting something.    It all effects everything else, so even if you don’t have to fix it, you MUST know about it to be prudent (i.e. not negligent).

I have had some great doctors here, but they are few and far between, and they leave.  Nobody wants to stay here if they can get away.   A couple have stayed.  I wonder about them 😉

For patients out there- the doctors work for you. Don’t put up with shoddy “care”.  Move on.   Cut your losses and run.  You deserve better- or at least to be heard.  They get paid for that.  Don’t be their victim.  Survive in a way that works for you ❤ 

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 !!

Not Personal

I simply don’t trust people  anymore.  Even many I’ve known for decades. After the 2016 election,  I have no faith in the capacity of humans to discern evil or the myriad of other negatives that the UNpopular vote put into the formerly respectable Oval Office.   I have no capacity to understand ANY reasoning that supports “it”.   It’s proven itself repeatedly to be a lying, xenophobic, ignorant, delusional, racist, PROUD crotch grabbing, family splitting, heartless buffoon.  I will NEVER understand how that is acceptable !!  Granted, the choices were limited in 2016, but the SCOTUS nomination ‘perk’ wasn’t enough for me to sell my soul to the devil.  Das Tweetenführer (<– saw that term originally on a comment section online; not original).  The Hitler of America.   SCOTUS nominations are a lame excuse… just because something is legal doesn’t mean those who don’t like it must participate.  

SO, I’ve cut out most people from my life.  Either they’re in the  “it”-lover camp- and tell me I’m overreacting, “It’s not that bad”, etc.  I’m JUST as entitled to my feelings and beliefs as the it-philes are to theirs.  Do NOT tell me what I “should” believe… I’m not any of you.  I don’t CARE what you think about me.  If you refuse to “let” me have my beliefs and feelings, then I refuse any relationship that has to be censored.   I will never (nor do I want to) understand the line of reasoning that goes into a  vote for ‘it’.   But, I do understand that it is the right to choose a buffoon, if that’s who best represents whoever voted for it.   Does ‘it’ represent YOUR values?  Really?

I used to vote GOP the vast majority of the time  (I don’t care what party the County Clerk or Coroner belong to – if they keep their noses clean, they could be from the Generic Party for all I care).  NEVER again.  They allowed this national disaster.  They allowed an absolute douche on the ballot.  I honestly think that suicide is a rational option if ‘it’ would get re-elected in 2020 (should ‘it’ not be in prison).  I can’t stand this Divided States of UnAmerica.  This is not the country I grew up in, and if I weren’t physically limited, I’d be gone.  Canada, UK… somewhere civilized.  I would NEVER choose this as a place to live.

The divisiveness FROM the GOP during the Obama years was just as nasty- and likely racially motivated (so worse)  based on comments from people I actually know.  That sickens me.  Something changed on January 21, 2017… and I don’t think the US can recover.  That would fit in prophetically with Revelations (the US wasn’t ever intended to be the Boss of the Planet).   This little experiment of the USA is done.  It failed.  Gonna be like the Berlin Wall coming down, or the break up of the USSR.  A bunch of complainers in England thought things would be better here. What fools !   I resent the lot of them.  Should be the Pilgrim statues torn down- not the Confederate ones that erase part of our history that is uncomfortable at best- and downright painful for those who were treated as property.  Do we want to negate THEIR reality?

I resent this “era” of treating the world like crap.  Our allies are leaving like rats off a sinking ship.  And they are right to do so.  Guilt by association.  I don’t ‘do’ that either.  I don’t blindly follow humans, like the GOP seems to do.  Tow the party line = don’t think for yourself, or check the accuracy of comments/accusations.   Take the easy way out- and just be told who to vote for… that will NEVER be me (and never has been).

I sincerely think about when would be the final blow for me, that would make me consider ‘opting out’.   The separation of those little kids from their parents was bad for my ‘opting out’ thoughts. It’s a MISDEMEANOR to crossi the border  illegally (non port of entry) though when entering at a port of entry, it’s legal to request asylum. A MISDEMEANOR means losing one’s kids?  How is that American?   This country is based on immigrants (who trashed the indigenous people and treated them much like property, by telling them where they could live and lead their lives per their beliefs).  The settlers in this country STOLE it.

I’m at the point that I really don’t give a shit what people think of how I think.  The people I grew up around (evangelicals) weren’t as rabid as they are now- but I don’t trust them.  My love for God is unchanged, as is He.  It’s the humans.  Many actually cause physical pain. and in the remainder of this term, it’s hard to tell how much more damage “it” will do.  And now “camps” are being set up to house the families (the ones lucky enough to ever see their kids again)… arbeit macht frei.  Dachau anyone?

Am I proud of my intense feelings?  Absolutely not.  But I understand the ‘why’ of them. And it’s not malicious.  It’s humiliation and horror.  It’s compassion for the targeted (our own citizens as well).  It’s everything “they” stand for by condoning ‘it’.  This isn’t home.  This is a nightmare.  And the MAJORITY POPULAR voters are hostages. This is the first time that I remember that the person in the Oval Office actually vilifies anybody who disagrees, and creates it’s own alternate universe- where its followers genuflect and drool in its presence, and hang on its every word or tweet.  I don’t think ‘it’ has ever read the Constitution, and has no idea how to ‘uphold, defend, and protect’ it. This has been one huge paid golf game for ‘it’.  And the crimes perpetrated against non-it followers are celebrated by “its” Kool-Aid consumers.

This isn’t “normal”.  It’s great that we have diversity in politics… but it should never be cruel.  It should never have a “f-you” attitude towards any of our allies, or the brutality of “zero tolerance”.    What happened to moderates?  What happened to “United”?    And for the “Christian” voters…. how is cruelty something Jesus would support?  What about the serial affairs?  What about ‘it’ not believing in asking God for forgiveness?  That should have been a  huge red flag for actual born again Christians who claim to support this evil. Read Matthew 6-7… does that sound like the GOP?  Nothing in the GOP reflects Biblical principles.  Compassion and charity aren’t in their wheelhouse.

Thank you to Call The Midwife, for hours of reprieve.

DIVIDED?  We’re gonna fall like lead through tissue paper.   I already mourn the death of the United States of America.