Orthopedic surgeon told me that pain can’t kill. I disagree. When chronic pain is the only reason for “opting out”, it is the cause of death behind the method of demise. But can’t tell a doc that, or someone gets their head shrunk. No relief for the reason behind the hopelessness.
And I’m more than bummed in some ways, but in other ways, I’m really OK with it. But, considering where I live, and my experiences with the medical folks here, it’s not that surprising that it’s been frustrating. It’s been 16 days since the nurse was here to meet with me for being on palliative. I was told that the chaplain and social worker would contact me, to set up a time to come and meet with me as well. I haven’t heard from anyone. When I called the nurse today, and asked to be taken off of the list, she asked if something had happened, and I basically said “Yeah- nothing!”. She told me people had been sick. Had I known that (COMMUNICATION), I would have understood. Why can’t someone just let a person know that they weren’t forgotten, and someone would be in touch as soon as they could. I can understand THAT. Even a 15 second e-mail… that would have been enough. I could have sent my well-wishes for the sick staff in a reply.
At the only meeting, I was basically told that there were much sicker patients than myself, and what did I want from palliative- which sounded like I didn’t belong. The next day on the phone, it didn’t seem to be an issue, so I didn’t bring it up. I know there are sicker people out there- I used to take care of them ! But this isn’t a competition ! When I mentioned knowing that they had sicker patients, she said that she didn’t mean it that way… OK. that’s fine. Good to know. *thumbs up*
Ended up OK- should I decide later on that I want to try palliative again. But for now, I’m on my own. Again… or is it still? I see the gallbladder surgeon on Friday (with a completely different healthcare system in town)… once the gallbladder is out, my days with doctors will be few and far between. Seems much safer like that, and if not safer, at least much less frustrating.
Well, that’s great ! I’m glad I don’t look like I feel... I’d have to worry about the dogs mistaking me for a fire hydrant or other excretory depository.
I’m not sure what THIS looks like:
– autonomic dysfunction: inconsistent regulation of blood pressure, heart rate, temperature
– diabetes w/complications on insulin
– degenerative joint disease (with one shoulder now having symptoms, both shoulders, both hips, and both knees involved- and no “elective” replacement surgeries because of my history of pulmonary emboli).
– degenerative disc disease, from cervical spine to sacral spine (or neck to butt)
– severe fibromyalgia
– carpal tunnel
– peripheral neuropathy (progressive sensory, diabetic amyotrophy)
– nocturnal epilepsy
– neurocardiogenic syncope/POTS (related to autonomic dysfunction/dysautonomia)
– GERD (fairly severe)
– epigastric hernia (vs. ventral- still getting worked up)
– sleep apnea
– diabetic nerve pain (feels like thighs are on fire, or hot needles in feet)
– defeated patient with little hope of getting anything addressed without some sort of support.
And I’m not sure how ‘visible’ my history is, either:
– APL (acute promyelocytic leukemia)
– acute, subacute, and chronic pulmonary emboli in all three lobes of my right lung and right pulmonary artery
– multiple concussions
– mild stroke
– hydration issues
– kidney injury (related to dehydration)
– sepsis (r/t pyelonephritis, cancer, and post knee replacement UTI)
– and I’m sure things I’m forgetting, including several surgeries.
Now add a doctor for nearly each of those, who don’t talk to each other. I’m supposed to manage it all, AND manage the communication (or lack thereof) between doctors. BTDT, and it ain’t working ! My job is to be a compliant patient. But how can I be compliant when decisions are being made without any input from myself, and the doctors not communicating with each other before ragging on me? I get to be a participant in my own life !! If not, I can’t work with that physician/NP/PA/XYZ. I can’t trust anybody who won’t hear MY concerns. The first part of assessment is focusing on the issue at hand- and that includes patient concerns. LISTEN- it’s cheap and used to be fairly standard.
Otherwise, if I’m not a part of my own healthcare, why should I go see those who have ME figured out without my participation?
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 !!
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 NO laxatives !! That is a minor miracle, considering I’d had to take the softener w/laxative since 1995 (last bad anorexia 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 USED to like Charlotte’s Web. Then I discovered the unclear labeling that looks like the capsules are 15 or 35mg of CBD, when it’s a total cannabinoid dose. This matters a LOT when titrating THC doses. I got VERY sick from this unclear labeling and only noticed the change when they added the actual dose of CBD to the info on their website, but NOT on the bottles of their products. I will no longer use Charlotte’s Web, and am moving to Plus CBD and/or Elixinol. I asked Charlotte’s Web about the lack of clear labelling on the bottles, and got no reply.
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).
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 !!). My current dose is 44 mg CBD (take 18 mg in the a.m., and 26mg in the evening) and 2.5-7.5mg of THC in divided doses per day.
EDIT: Because of dosing confusion on the Charlotte’s Web capsules, I’ll be changing to Elixinol and/or Plus CBD. I went through a lot of craziness with the THC dose because of the CBD dose not being clear- it was off by half. TOTAL cannabinoids are NOT the same as the CBD dose. Charlotte’s Web wouldn’t accept my product review.
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.
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.
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 😉