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 ❤ 

Suicide Secrets- Time to Spill It… Secrecy Just Makes It Worse

With all of the suicides of notable people in the last couple of weeks, it has stirred up my own battles with depression and suicidal thoughts.  Not to worry- nothing ‘serious’ has gone on for years.  When the physical pain becomes more harsh than usual, or there are more health scares, I do think about the ‘what ifs’ of a longterm and debilitating illness, but I’m nowhere near that.

“Flaws”  were never discussed in my home, even after I’d talked briefly with our pastor about suicide when I was in 8th grade. There were some hard times in high school.  An English teacher that I did not have as a teacher reached out to me, and did an old, quick depression assessment.  I didn’t do well, and she told my guidance counselor who’d known me since I was two years old.  He talked to my dad (the principal of said high school) , who was furious that I’d made some “not perfect life” comment to those outside of our house.   I was given strict instructions to never tell anybody that anything was wrong.  Verbatim:  “If someone asks you how you are, you say “fine”.  I don’t care if you have an arm dangling by a thread.  You are FINE.”  When I worked in psych and alcohol/drug rehab, “FINE” translated to ‘f-ed up, insecure, neurotic, and emotionally disturbed.   I guess I have been ‘fine’ a few times in my life 😉

Back to the suicidal stuff.   In my early teens, it wasn’t something I considered seriously (mostly because I was terrified I’d get in trouble, assuming I’d mess things up and survive). And I didn’t really want to DIE.  I just wanted to feel less confusion, fear, and emotional pain.  I felt a lot of pressure being the principal’s kid (some self-imposed, some overt instructions from my folks).  Then I went to the University of Illinois after a summer of becoming anorexic.  I was a mess.  That was the fall semester in 1981.  By the first couple of weeks  after Christmas break  in late January 1982, I was still a mess, with the anorexia getting worse, and being alive felt like torture.  With my brain starving, my thoughts were not ‘normal’, and dying seemed like the only way to make the eating disorder end.

By the first week of February 1982, I had a plan, a private dorm room, and the whole thing figured out- except I didn’t really want to die. Plan:  I would overdose on the tranquilizers I’d gotten to (presumably) make me less anxious about eating, involve some sort of booze, and go into my lockable dorm closet, lock it from the inside, and also make sure my dorm room was locked.   I had been mandated to see a university student health center counselor my first semester there, and I finally fessed up to her.  She had the university fire department take me to McKinley Health Center, where they ‘babysat’ me until an adult friend (for a long time, from church) could come and get me- I did NOT want to face my parents.  I was SO ashamed for not being ‘perfect’ enough.   There was a blizzard that made most of IL a skating rink that February, so it took a few days for everything to happen to get me to the hospital near Chicago.   Where my parents were waiting in the lobby (I hadn’t considered them needing to be there to sign me in, since I was on dad’s insurance).   They were allowed to see me, then ‘banned’ from any contact for a month until my assigned psychiatrist tried to sort out the family dynamics.

I wasn’t a teenage drinker.  I’d  tried a few things here and there, but I hated the whole going across state lines thing on Friday nights,  where the drinking age was 18 at the time.  But that fall semester of 1982, when I finally got to return to school, I was not coping well with feeling like  the designated nut job.  I tried SO hard to make it look like all was well, but it wasn’t.   I started going to bars and drinking 4-5 drinks in less than 2 hours, then stagger back to the dorm.  On September 2, 1982, I got  back from the bars, and was SO tired, but couldn’t fall asleep. I remember taking the prescription sleeping pills (from shrink I was assigned to at the hospital near Chicago).  I just kept taking them (there were 10 Dalmane 30mg capsules left, and I took them all), like some sort of automated prescription Pez dispenser was dropping capsules into my hand, that went to my mouth seemingly of its own accord.  I didn’t think about dying, but after taking the sleeping pills, I was told (and stomach contents confirmed) that I then went on to take 50 imipramine tablets.  No matter what was going on in my head, my body went into a 3 day coma.   My roommate didn’t notice anything alarming enough to call an ambulance until the day after I’d taken the meds on top of the alcohol.  I told her I was just tired until I couldn’t talk anymore.  I was told more than once that I physiologically shouldn’t have survived the type and quantity of medications along with the booze, and the length of time before my stomach was pumped.

I didn’t want to die.  I wanted the expectations to FEEL less intense (they weren’t imposed by anybody but myself at that point).    I’ve been in therapy for various things, starting with the fall of 1981.   I was stunned to wake up in the ICU at the same hospital where I’d been born prior to being placed for adoption.   The first thing I remember was someone putting an oxygen mask on me (then I fell asleep again), and a syringe going towards my crotch (at the time, I didn’t know that a syringe removed the water from the balloon of a catheter that keeps it from falling out.  I didn’t know I HAD a catheter… so that was awkwardly confusing).   I also remember not being able to follow the Saturday morning cartoons they’d put on the TV.

One therapist would ask me about suicidal thoughts, and told me she would NEVER ask me to give them up, since having that option helped keep people from feeling backed into an inescapable corner.  She would ask me to hang on just until she called me at whatever pre-determined day/time she came up with.  And that was helpful.   She never shamed me for essentially just looking for ways to not feel emotional pain.   I never liked “contracts” because I didn’t want to sign something I might not be able to uphold- but the simple verbal request to hang on was enough (everybody is different, and some folks need more supervision, so more formal contracts or even interventions and required hospitalization might be the first step some folks need).  At the very least, I knew that someone cared enough to take 5 minutes to call and see if I was OK the next day.  Sometimes, when things were chaotic in my head, that external reminder that I wasn’t alone was sufficient.

I hope someone reads this who is a survivor of someone who completed a suicide attempt, not surviving it.   You need to know that it isn’t about not loving family/friends enough to stay (or reach out).   In that state of mind, people truly do believe that the world (meaning their family and friends) would be better off without them.  It’s about not being able to imagine things ever getting better.  It’s a desperate, last-ditch attempt to find some peace.  But it’s not generally about not wanting to live.  It’s about not wanting to have to endure emotional pain that feels like endless torment.

Don’t be afraid to be blunt if you are concerned about someone.  Asking about suicide will not make someone suicidal !!   The best thing someone can do, especially if they don’t know what to do, or don’t have training in crisis negotiations, is just to listen.  Don’t judge.  No empty “it’s going to be fine”.   And NEVER “oh, it’s not that bad”- that just says “you don’t care enough to try and understand me”.    Let the person know that you realize that they are doing the best they can.  Let them know that you understand that their pain is overwhelming.   NEVER “I know how you feel”…. unless you are in a person’s head, and have had identical experiences and reactions to things, you have no clue.   Empty platitudes are not helpful.  Saying something like “how can I best help you?” is very helpful.   Letting someone know that you don’t have the answers, but will do what you can to help is SO much more helpful than someone who is clueless trying to help someone when they don’t take the time to really understand the situation, and can’t admit that they don’t know what they are doing.  If you feel like you are in over your head with someone who is suicidal, call 9-1-1.   If the person gets mad, they’ll either get over it or not- but don’t put yourself in a position to have unimaginable regrets if the person can’t hang on.

Parole Protest 2018… Here We Go Again

Carl Edward Chambers is up for parole again.  I don’t think there’s a lot ‘new’ to say.   He should never walk free. Period.   I understand the asinine rules of mandatory release that the state of TX didn’t think through when they allowed for first degree felons to be freed, even if on parole/”supervision”.  Repeat offenders and those who have caused bodily harm to another human being have no business being among law abiding citizens.  They lost that right with their CALCULATED  DECISIONS to hurt others.    The State of TX is complicit with what happened to me.  All they can do now is keep Chambers contained like the animal he is.

1.  He plea bargained to a 60 year sentence, and is not due for mandatory release (again) YET.   It’s time he does ONE thing positive, and complete his incarceration (as much as possible with “mandatory-freedom-to-hurt-more-innocent-people” still in play with this case).   He’s already botched one round of mandatory release, so why give him the chance to hurt someone else?   THAT is my primary reason for continuing to protest his release.   My life is trashed, and I’ve made sure I have plenty of options for defending myself.   He was very calculated with what he did to me, even stealing my address and phone number from the sister he was staying with, in order to target me.   I can’t be the only woman who reminds him of his first wife…. that’s what I was told- I looked like her.   I’m fairly standard-issue…. overweight, brown/gray haired middle-aged white woman.   Lots of targets in the ‘free world’.

2.  EVERY time he’s been on parole, he’s committed a more violent crime.   Murder is the only thing off of his resumé, that we know of.   Why give him the opportunity?

3.  I’m getting older, and have multiple medical issues, to the point of being disabled for over a decade.   Because of the severity of what Chambers (I refer to him as Numbnuts) did to me, NOBODY else has touched me.  I can’t stand the thought of being ‘handled’ and violated.  The sensation of having another human’s body heat and breath near me is nauseating.   So, I know I’ll die alone.   When I was younger, I always envisioned a life with a husband and house full of kids.   Normal. Happy.  Fun.  LOVE.

4.   My parents are both gone now, but they suffered in knowing what had happened to me.  My dad read the very graphic police statement I gave, when they visited  just  a few months after it happened.  There is always collateral damage when someone violates another human being.  My folks didn’t deserve to have to deal with what happened to me.  They lived 1200 miles away, and I didn’t want them to come initially since there was so much going on with statements, meeting with various legal folks and the rape crisis volunteer, etc.  I encouraged them to talk to their pastor, or even friends… but my mom’s close co-worker at the time took me to dinner the next time I flew home, and asked if I’d been raped- she had watched changes in my mom, and mom wasn’t talking about it.

Initially, my mom just wanted to know if I was pregnant, and I was- but thankfully the spawned little bastard fell into the toilet at about 10-12 weeks after the rape.  I’d never had sex before, so I know ‘what ‘ it belonged to.  I wanted nothing to do with it, but struggled with abortion.  I am adopted, so didn’t want to go that route… so when the cramping started that morning that I’ll never forget, I was SO relieved to see that mass of %50 sociopathic DNA swirl away forever.   Had I gone the adoption route, what could I ever have told that kid if he/she came looking for me ?  How could I ever have spun the tale to make that kid feel like he/she wasn’t one big fat felonious mistake?   And I wouldn’t lie to an adoptee who simply wants the truth about his/her ‘roots’.    That was the only baby I ever ‘carried’…. the impact of the wine cooler bottle that Chambers rammed up my vagina for many, many minutes tore uterine ligaments…. think about that.  What kind of force is required to rip internal, unseen ligaments?    I could not have raised that ‘thing’ without prejudice, and that would have been unforgivable on my part to do to a child.  SO, the toilet ‘delivery’ was a blessing.   And still traumatic.  Rape….the crime that keeps on giving.

5.  The person I was before January 10, 1987 is DEAD.  “She” died the minute I knew what was going on… the knife at my neck, and threats to kill me repeatedly did the job.  My body may have survived, but my dreams of a  husband and kids of my own was gone. For good.   I avoided having time available during ‘normal’ social times like weekends and daylight.   I worked a lot of nights and weekends for a nice excuse to never be alone on a date.   My view of the world was mutated to see ‘plausible risk’ everywhere.  I’ve managed to not be paranoid, but I know that safety is never a guarantee, and nobody really ever knows what someone else is capable of.  That is my worldview post-rape.   There is no ‘safe’.

6.    He still owes me a ‘why?’ answer.   He could easily send it through the Board of Pardons and Parole and it would be forwarded to me.  The lack of any sort of explanation tells me that he would do it again in a heartbeat, and has no remorse.   Just another day for him.  S.O.P.  for Numbnuts.   I used to have ‘revenge fantasies’ early on, involving a vegetable peeler, and Numbnuts restrained in a chair for me to ‘peel’ the part of him that hurt the most.  It’s been years since I imagined that, as revenge isn’t  ‘me’.  But it was a way to cope for a while early on.  Now, I just want what I asked for with the plea bargain.   Sixty years.  No more, no less.  He’ll be in the TX DOCJ system until he’s at least 88 years old.  He’s nearly 60 now- and there is nothing about being 60 that makes him less of a risk.  Last time he was out, he had a lawn-mowing business (enabling him to be alone with homeowners any time he was ‘mowing the lawn’).   How was that idea approved?   He even moved while on “intense” supervision.  So intense he moved without anybody knowing.   Seriously?  That’s “intense” supervision?   I was told he would have an ankle GPS monitor and have to give detailed daily activity plans to his parole officer.   I guess “moving today” didn’t make the list.    Convict + secrets = more crime.

7.    Last go around with parole, he had obviously lied his way into the life of some woman with no self-esteem,  and she married him.  WHILE IN PRISON FOR RAPING  AND BEATING ME.    He’s still manipulating women.  Couldn’t have been honest about what he’d done- or she’s just nuts and passively suicidal.    Her grandsons wrote notes on Chambers’ behalf that sounded like someone with an 8th grade education had dictated them.    I guess Numbnuts was allowed around kids because he opted for adults to violate.   NO WAY I’d let any kid I had be around someone like Numbnuts.  Same idea as letting John Wayne Gacy be a Boy Scout Leader.  Just not a good idea.

8.  I’m a lot more angry now than I was years ago.  Mostly it reflects the isolation and no family of my own.   Had I not been raped, I would have had a shot at “normal”.   Chambers killed me.  He killed my dreams. He killed my belief that most people are good. He killed my ability to feel whole.  He killed any desire to be physically close to another person.  He tormented my parents.   He impregnated me and caused weeks of torment until the spawn was flushed.   He’s shown no remorse that I’ve ever heard about (but he’s a sociopath, so not expecting much there).

Geez… just thought of this.  For  8 years more than half of my life, I’ve been a rape survivor.   Still dealing with the aftermath of someone who CHOSE to make his life useless and cause irreparable damage to mine.   My life stopped at age 23.  And yet 31 years later, I’m still having to justify keeping my “killer” locked up.

 

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.

Marijuana For the Pot Virgin

First of all- and this is very important- in the world of medical marijuana, it’s not ‘weed’, or ‘pot’.   It’s medication.  This is not recreational usage. For many of us, it’s our last hope for something to help with whatever our qualifying conditions are.   We don’t “use” marijuana, we “medicate” with marijuana.    Don’t ever imply that  a medical marijuana patient is looking for a buzz.  We just want to have a life that is a  little closer to what is considered normal.    This former detox RN would never have considered medical marijuana if smoking it was my only option (though many MMJ patients get good relief with smoking their mj).

Prior to getting my MMJ card, I’d never smoked marijuana.  I’d smoked regular cigarettes on and off for many years, starting in the hospital for anorexia when I was 18.  I’d quit for a few years, then start up again.   I quit for good the day I was admitted to the hospital for blood clots in my lung, back in April 2007.   Before my dad died, he asked me if I’d ever consider using medical marijuana, and I told him that if I didn’t have to smoke it, I’d be willing to try it.  I’m glad we had that conversation.  It means a lot to me that he would understand, and be happy if I found something that made my life better… he always wanted my life to be better, and even though he’s been gone for nearly two years,  I still feel his love and hopes for my life after he was gone.

Back to what it’s like to use medical marijuana…  The biggest factor is how it’s used.  Since I’m not smoking (using combustion to burn the product), my other options are vaping (no combustion- just convective heat to produce vapor), edibles, tinctures, sprays (under the tongue),  and using it to cook with in mainstream foods (like ramen, spaghetti, etc).   I don’t want regular meals to have MMJ in them… it would waste some of the MMJ since I’m not a fan of leftovers.  I know some people sprinkle the decarboxylated flower on foods… but I’m not there yet.

My first exposure was edible infused chocolate, before bed.  One little square of a hybrid, in one brand  of commercial chocolate bar has 18mg of THC (or the part of marijuana that has psychoactive effects, depending on the dose) which was perfect.  I slept incredibly well, and while I woke up with some pain, I went back to sleep immediately instead of tossing and turning for the rest of the night.

Since this is all new, it’s common to not quite get things right.  The next night, I tried some vaping along with a different kind of chocolate… and I was zonked the next morning, and while I got up to use the bathroom, take my other meds, and get something to drink, I didn’t get UP until 2:00 p.m.   Not the goal.   But, lesson learned.

During the day, I’ve tried some of the sativa strains (which are different than the indica, or hybrids).   Sativas are more ‘perky’…. my favorite edible for this is the gummy candies.  They have THC, but I had no “high” at all, but did have some relief from some pain during the day.    There are SO many strains.  Check out Leafly.com for more info on the hundreds of strains of marijuana.

I’ve also been using CBD oil for months, which enhances the effects of the THC, and minimizes any unpleasant side effects (which are all dose related).   The combination has definitely been helpful already, even only a few days into all of this.

Note to self:  don’t decarboxylate everything (heat to release the active components of the flower/buds) before knowing what I’m going to use it for.    There’s definitely a learning curve.   But I haven’t felt ‘stoned’ at all (just really tired that one morning).

I made my first candy bar today with Girl Scout Cookies (strain of marijuana) and mint chips.   Turned out that my math was a little off… but if I break each section of the bar in half, I’ll have a good dose- and it’s a sativa.  I’ve had hybrids at night- and now have some indica (more relaxing and sedating).

Bottom line- I feel much more alert and intact than with opiates.  I’m still learning a lot, and I’m sure I’ll make mistakes- but marijuana doesn’t kill people.  It’s safe to adjust and test to get the right dose.   In the meantime, I’ve taken no opiates since getting my MMJ card, and have no interest in them whatsoever.   And with the MMJ, there is no interest at all in getting into the car, and risking a low speed chase 😉

Girl Scout Cookies (strain) in Guittard Mint morsels and a few drops of peppermint oil (Lorann).

First Trip to The Medical Marijuana Dispensary

After nearly four months (113 days), my IL medical marijuana card came today.  I actually cried when I saw the envelope from the IL Department of Public Health, and felt the card inside.  It’s my  last hope for effective pain relief for severe fibromyalgia, diabetic neuropathy (made worse by chemo for leukemia), degenerative joint disease, and degenerative disc disease.  I’ve been on so many different opiates, been to chiropractors, physical therapists, used TENS units, had steroid injections, yadda, yadda, yadda.   This is it.   And I’m so hopeful based on what I’ve heard from people who are using MMJ for their qualifying conditions.

I called the dispensary (MedMar) before I started over there, to be sure there wasn’t a need to have an appointment.  The guy just asked that I be there an hour before closing so they could spend time with me.   I told him I’d be there in 15 minutes !   When I got there, I walked into the lobby area, where an armed security guard was in a glassed in corner of the room.  He was very polite as I gave him my MMJ card and drivers’ license.   He’s a retired police officer, and said it was a good job.   He told me that since it was my first time there, someone would be out to get me.   And soon, a kind young man came to the door and invited me in.   We had to wait between two doors, until the door to the outside had completely closed- no chance of anybody sneaking past.  It is all very secure and professional.

It isn’t weird inside.  It’s nothing like “Disjointed”.   It’s more like an old fashioned chemist’s office than a head shop (though they had some beautiful glass pipes).   There were photos of flowers, and various MMJ terms.   It’d didn’t smell particularly “weedy”.    Nobody was stoned.

Then there was an initial interview about  my qualifying conditions… and answering my basic questions.   I explained that I’ve never smoked marijuana before, and had no experience with it.  We then went over to where all of the product is stored (lots and lots of options).   I’d told the young man that I planned to make my own edibles for the most part, and really didn’t want to smoke the weed, but didn’t mind vaping.   I ended up with  a nice assortment of concentrated oils, ‘shake’ (ground up MJ that is good for edibles like canna butter, which requires processing), edibles (chocolates and gummies), disposable vape pens, and a bit of “flower” (or bud) to use in a dry herb convection vaporizer, or for cooking.  And, I got one package of joints (5 of them) , just for the heck of it- I can always unroll them and  use the dried MJ in something else if I don’t like smoking it.  The joints are factory rolled, and a lot bigger than I expected.  I’m hoping I can put them out after a puff or two, and not end up wasting any of it.

Anyway, that’s the overview of my first trip to the medical marijuana dispensary.  🙂

Initial Impressions of Cannabidiol (CBD) Supplementation and Hemp Products

My initial  desire to apply for a medical marijuana card is for severe fibromyalgia, PTSD, seizures, and some anxiety related to health issues, as well as the complete change in my life after the death of my dad.  My anxiety is  relatively mild compared to actual anxiety disorders, but it was still noticeable.    I’ve started with CBD products as I wait for the card.    I had no idea that our bodies have an ‘endocannabinoid’ system, and there are receptors in our bodies that make cannabis usable in therapeutic ways.

Years ago, I saw documentaries about Charlotte’s Web CBD and how it transformed the life of a 6 year old little girl (named Charlotte Figi) who had 300 seizures per week and was wheelchair bound.  Since Charlotte’s Web, her seizures are less than weekly, and she’s walking and developing much more like her twin sister who doesn’t have the same seizure disorder.   I liked that there were no psychoactive properties in CBD.  It’s the THC in cannabis that is the ‘stoner’ component.   CBD is useful for pain, sleep, anxiety, and a lot more.   The possibility of getting off of some of the regular pharmaceutical products that do an iffy job (especially with pain and sleep) was something I wanted to try.   But at the time, I didn’t know that CBD oil is legal in all 50 states, and is considered a ‘food supplement’, and not a drug, so the FDA keeps their nose out of it.   It’s legal to get online !

I got some Charlotte’s Web CBD Oil (in the olive oil flavor), as well as some of their capsules a few months ago, and it took me a while to get serious about consistent dosing.  It takes some finagling of doses before the right one ‘fits’, but the best part is that there aren’t any horrible side effects if the dose is a bit too high.  I just got really tired, and my blood pressure was a little low- but that didn’t last more than 1/2 a day- and I was very aware of it, so didn’t feel unsafe (unlike the effects of many prescription meds).   The sublingual oil is a good way to get it going in the blood stream without having to go through ‘normal’ metabolism when swallowed, but the capsules are nice as a “steady” dose.   When I do get my MMJ card, CBD can be used to cut down on any unpleasant effects of THC.  (I’ve never smoked pot, so have no clue how I’ll react to THC, and plan to use ‘non-combustible’ routes of use).    It will be another learning process to find out the best combination for me, to get pain relief without feeling spacey or ‘impaired’.

Since finding the CBD dose that seems right for me, I find I’m sleeping a LOT better- more soundly, and not waking up before dawn nearly as often.  I’m ready to hit the sack, and actually fall asleep within 10-15 minutes (I take my night meds around 6-7 p.m., and am usually out cold by 11 p.m. – this from someone who used to sleep until noon after being up until 4-6 a.m. EVERY night).    The intense PTSD symptoms re: my dad’s death have also eased enough to notice.  While I still miss him a LOT, I’m not crying nearly as much, and thinking about those last horrible 19 hours, (when he was absolutely incoherent and at best only understood very short, direct comments and questions) doesn’t bring on the same sense of absolute despair.   I made the promise to him that I wouldn’t leave his side, and I kept it- only to find that the symptoms of PTSD from that last day were worse than the symptoms from a six-hour rape when I was in my 20s (that I still deal with in the form of parole protests every 3 years).    I don’t have the  almost panicky feeling like I have to plan for every contingency for self-sufficiency, now that dad is gone.

I’m also taking fewer opiates for pain  (I detest methadone- a legitimate pain med- because of the rapid physical dependence that occurs- which is NOT the same as addiction).  I still have hydrocodone for bad days- which does not have bad interactions with the CBD, though I don’t take it more than a few times a week.  I could ‘justify’ taking it more often, but I want to use the CBD  as much as possible, and avoid the opiates unless it’s just too much for the CBD alone.  When I get my card, the hope is to not take opiates at all.

I’ve been able to get off of carbamazepine (one of my seizure meds, also used as an adjunct pain medication), which has always been very hard for me.  Granted, I  started weaning before getting the Charlotte’s Web, but it made getting off of the last of the carbamazepine less  ‘mood swingy’ and emotionally labile.     Since getting off of the carbamazepine, my brain feels less foggy.  I’m back to doing a memory/hidden object game on Facebook- and feel like my synapses are firing more quickly.   Three months ago, I was flirting with the terrifying  idea that I might be seeing the initial signs of progressive cognitive impairment… or dementia.   Having fibromyalgia and a history of intense chemotherapy for leukemia has left me with some word finding issues- but I was noticing some crazy short term memory problems as well.   I never know what causes what, but it was an unpleasant situation to KNOW that something was changing in a bad way.   I still have some word finding issues (worse when actually speaking; writing is somehow easier), but the memory issues for other things seem better.

There is another route of CBD that I wasn’t sure I’d enjoy, but I really do.  It’s ‘vaping’.  For those who don’t know what that is, it’s like e-cigarettes, but with CBD oil.  My favorite doesn’t have any glycerin or glycols, and is Limoncello flavored !   It’s a very smooth, tasty ‘hit’ of CBD oil that is a small dose compared to the capsules, but it’s very enjoyable.  There is NO combustion, so no soot/ash/etc.  It’s vaporized by a %100 convection heating element, to form the vapor.   I recently got a mint flavored cartridge that is a bit more ‘herby’ but still nice.  Again- no funky additives that aren’t necessary- just the pure CBD oil, natural flavorings, and ‘terpenes’ from the hemp plant.    I highly recommend Entourage CBD vaping oils.   There is no smell in the house with vaping.   That is a huge perk.

CBD edibles are also good.  Because any type of cannabis product is carried  by fat, it’s important that the chocolates, gummies, mints, etc are made with fat, or the CBD has been processed correctly so it blends with the other ingredients.  With chocolate, fat is built in (cocoa butter).   The flavor can have a bit of a ‘skunk’ background, but I’ve found that the chocolates with mint are the best at masking any type of weed flavor.   Some CBD edibles aren’t so tasty, but there are many brands that are quite nice.  Iris makes great gummies and small chocolates in milk and dark varieties.  Hemp seeds (I like the shelled ones) taste like tiny pine nuts.  They are very small, but a couple of tablespoons has beneficial Omega oils.  I usually eat them plain, but they can be added to cereals, yogurt, etc.   Hemp oil is a good alternative to salad oils.   I get my seeds and oil from Amazon.

I got one brand of CBD oil that is a decent oil, but the flavor (chocolate mint) wasn’t strong enough to combat the ‘weedy’ undertones in a sublingual oil (that need to be held in the mouth- under the tongue- for as long as possible to increase absorption directly into the bloodstream).   I managed to salvage the bottle by making truffles out of it, with semi-sweet chocolate.  I can have a consistent dose per piece, and though I could still taste a bit of ‘funk’, it was completely doable.  I added more mint which helped a lot.

Initially, I planned to only use CBD, but in all of the reading I’ve been doing, I’ve found that some THC is desirable to increase relaxation, and make pain control more complete.  There are dozens to hundreds of strains of cannabis that have varying degrees of THC, CBD, and the other related chemicals that each have a role in the management of medical symptoms.   Each symptom can be helped with various combinations of CBD and THC, and finding the ratio for each is a process. The ‘bud tenders’ in the dispensaries are very good at knowing what active ingredients do the most for each condition.   It is very possible to minimize the THC effects so that it’s possible to function.  Of course, it’s never recommended that a person drive after ‘medicating’ (that’s how MMJ is referred to)

I’m hoping that my MMJ card gets here soon, so I can go to the dispensary and get started on what feels like the last hope for increasing my quality of life.   Hope.  That is what all of the interest in medical marijuana is about.   I don’t want to feel wasted.  I want to feel some degree of relief just living in my own body.  I have enough qualifying diagnoses, and types of pain that the idea of living a long life without some relief is not something I look forward to- so I’m hoping to have a renewed sense of peace about having a life that is worth being here for.   I am NOT in any way suicidal or not wanting to live… I just NEED some relief.   I’ve had constant pain since 1995- and all of the things I’ve tried have been moderately effective at best, but not for any length of time.

When medical marijuana first became possible in my state several years ago, my dad asked me if I’d ever consider using it.   He knew that pain was a constant reason why I was limited in what I could do.   I told him that I didn’t want to smoke it (I’d smoked cigarettes on and off from 1982 until April 2007 (when I had the blood clots in my lungs).   At that time, I had no idea what forms would be available, but of course, I’d heard of pot brownies.   My dad was a fairly conservative person, but also considered context with the medical marijuana.   I’m so glad we had that conversation.  He was OK with my decision, and even though I’m a middle-aged woman, it mattered what he thought.

The more I read, the more I learn about the incredible benefits of cannabis.  I have no interest in ‘recreational’ weed.  I want some medical stability and relief.   I want quality of life.  I want something that actually contributes to well being without the side effects that make for more problems.    I am hopeful that medical marijuana will do that.  I’m already impressed with the benefits of CBD I’ve noticed so far.