So Much For Medical Cannabis… I’m Done With THC

I gave it a go for a little over 2 years.  I had to try it to know I’d done what I could to avoid staying on opiates, but I can’t take the increasing pain of the progressive sensory neuropathy, degenerative disc disease, degenerative joint disease, fibromyalgia, and now gout, with THC.  I’ll still take the CBD as a supplement, as it helped me to get off of one anticonvulsant completely (I’ve got a seizure disorder), and %40 of another- along with the meds to deal with the side effects.  This week, I went back to the pain management doc that I’ve seen on and off for over a decade, and got pain meds (patch), as well as an injection in my neck. I kind of feel like I failed right now, even though intellectually I know that’s not accurate.  I have to be practical, and safe.  My quality of life and ability to get anything done around the house isn’t possible with the pain. My legs shake, and I become unsteady.  There are no brownie points for needless suffering. I don’t use the word ‘suffer’ lightly, as it feels like another way to play the victim. But it’s been bad.

Something else that made trying THC something to consider is the emphasis on those who use opiates as inevitable future junkies. It’s actually far from inevitable. Studies have shown for decades that those who use prescription pain meds as ordered are very unlikely to become addicted to them. The terms tolerance and dependence aren’t explained, and everybody gets lumped together.  People who use medications AS PRESCRIBED will likely develop dependence and tolerance if they take them for a while (ever had a caffeine-withdrawl headache? Same concept.)  Those terms are not the same as addiction. Addiction is driven by emotional issues, and the individual trying to relieve emotional pain with medication for physical pain. No amount of the wrong medication for any problem will ever relieve the real issue. This explains that addiction is a combination of behaviors and substances (that can be drugs, alcohol, food, the ‘high’ from gambling, and other things that trigger positive responses in the pleasure center in the brain).

https://www.mentalhelp.net/addiction/

There are now so many restrictions on who can prescribe what meds in medical groups, that the writing was on the wall- pain medication was the new ‘evil’.  Never ask a doctor for something for pain, no matter how many documented diagnoses there are.  I felt I needed an option if the restrictions got worse. I’d like to see the statistics for the increase in heroin users after hydrocodone was made a Schedule II drug (in the class with morphine, hydromorphone, and other very strong opiates). The ‘rules’ are always made because of the behavior of rule breakers. That ‘logic’ escapes me… it’s not like the rule breakers will suddenly jump on the straight and narrow. They’ll find a new way to break rules.   The rules don’t take into account those who do what they’ve been instructed to do. Should there be good follow-up with those on prescription pain medications ?  Absolutely.  But there is no reason to make anybody “live” with pain that limits their life to the point of decreased mobility to avoid more pain even within their own home.   This article has some good explanations about the differences between tolerance, dependence, and addiction.

Distinguishing Between Pain-Related Dependence and Addiction

Some of the issues I’ve had with the THC include the following  (I realize some folks have had good results with THC- this is MY experience):

–  I can’t know if the same strain is in each bottle of the stuff I got, as  no strain of cannabis is listed on the tablets/capsules/edibles containers that I’ve used (I don’t smoke the stuff- the stench is not welcome in my house. Dry herb vaping- no solvents at all- just the dry cannabis that vaporizes, not combusts- was also not going to work because of the coughing). There are literally hundreds of strains of cannabis.  Third-party testing is on the container (required by law), but not the strain, aside from a general sativa, indica, or hybrid.   I don’t know if it’s strain-consistent from batch to batch– just the number of milligrams of ‘whatever’.  Different strains are good for different things. And some have more likelihood to cause specific side effects- can’t know what might be causing what if no strain is listed.

I live alone. Some of the effects of THC are not safe on a mobility level.  My balance goes wonky if a strain is stronger than what I’m used to, and I’m already one fall away from needing help with more than just the lawn, snow removal, and grocery delivery.  I can’t risk that. My joints are already trash. It wouldn’t take much to finish off  my shoulders, hips, or knees. Or end up with compression fractures in my spine. That means my independence is at risk, and that is something I won’t even consider. If I can’t be at home with my dog, it’s over.

–  the dryness of my eyes was horrible. I was either dripping with tears (that burned) as my body tried to protect my eyes, or using artificial tears to not feel like I’d had cotton shoved into my eyeballs. That also caused blurred vision to the point of not being able to read anything without a 10x – 30x lighted magnifying glass (some print is tiny on a good day anyway… I couldn’t see individual words. Watching TV was lousy, and the computer (my lifeline) was nearly useless. A blue light filter helped a little- but not enough.

the ‘thought stealing’ sensation was too weird.  I could be thinking about something, then it would just be gone, and it was going too fast to get back.  That is unsettling, especially because the awareness of it was acute. Even harder to carry on a conversation with another actual human being.

there isn’t a consistent time when it takes effect.  I used it mostly to help ease the pain so I could sleep. If I waited too long to turn the lights out and drift off, I got a literal body ‘buzzing’ sensation (hence the term buzzed), or floating, or like I couldn’t move.  There was a sensation in my head that something wasn’t right – not necessarily bad- but not OK.  There’s a term called ‘couch lock’- and that’s what it feels like- being locked to the furniture, almost being part of it.  There was nothing about those sensations that will ever be desirable to me.

it’s useless for acute pain.  I broke my ankle a few months after getting my medical cannabis card.  I iced it, and had it wrapped (before getting an x-ray a week later- thought it might be a sprain similar to what I’d seen with adolescent patients who landed wrong while playing basketball).  I felt guilty using some Norco from 2014.  I used 3 full doses and 3 1/2 doses in 6 weeks.  And I hurt a lot more than was necessary.  I was diagnosed with gout a couple of weeks ago after a nasty flare that was a kind of pain I hadn’t felt before- tiny crystals in the joint felt like someone was sitting on a chair into the bone on top of my foot.  One urgent care a couple of months earlier, with milder but definitely ‘not right’ pain, thought it could be a blood clot (minus warmth, redness, swelling, or any other symptoms of a clot). The second urgent care a few weeks ago had a very astute nurse practitioner who knew to check my uric acid level, which came back very high.  I was on prednisone for 5 days, which jacked my blood sugars badly, but the prednisone did the trick to help that first flare. I’d already decided not to use the THC over a month ago, so was using my trusty ice packs, and the vintage Norco in 1/2 doses x 4 over a week.

Part of another disorder I have (dysautonomia) causes some similar symptoms to the side effects of THC, and I pay good money for the meds needed to help NOT to feel those symptoms. Why would I make it worse on purpose?   That is so bizarre and counter-intuitive. I don’t want to feel even a tiny bit stoned. I took microdoses after getting the CBD dose figured out (more on that in a minute), and still had side effects that are not acceptable to me.

I can see where it could be useful for severe PTSD, where escape is the only way to get any sort of relief from memories and flashbacks. I guess it could help with anxiety IF someone finds a strain that is consistent (those who smoke cannabis can get strains consistently, or those who want to make their own edibles and don’t care about consistent dosing). But for folks who are using that type of quantity, I’d hope they were housebound, and had access to someone to drive them anywhere they needed to go.  I never took a dose if I had to drive to an appointment.  I’d just have to hurt, and take a dose after getting home.  Once I did take a dose, there was never any desire to leave home.

There are people who have had positive experiences– and initially, my psoriasis was completely cleared up. Then came the hyperemesis cannabinoid syndrome, with months of nausea and eventual vomiting. I’m not a puker- that’s what put it together for me.  During 20 months of daily chemo for leukemia, I barfed once on day 8.   Because I didn’t have accurate info from a very well known CBD producer about the specific amount of CBD (not the total cannabinoid dose), I didn’t have the THC dose right- CBD helps counteract side-effects of THC. I also had a gallstone that was acting up, and that blended into the symptoms of the build up of THC because of using it daily, and I was SICK.  (The half-life of THC is very long, with some still showing up in drug tests more than 4 weeks after the last use, and with dietary changes that alter body fat percentages, more can be released months after the last dose- used to freak out the detox patients I took care of years ago).  I went through ultrasounds, CT scans, lab work, surgical consults, a bitch of a GI nurse practitioner, etc because it was thought that there was something going on besides the gallstone. I had THC continuing to build up, and  I didn’t know the accurate dose on that one brand’s product (if you use CBD, you want to see the exact amount of CBD per specific quantity of product- and third party testing). Everybody and their wombat is on the hemp bandwagon, and  saying how wonderful hemp oil  is, but non-CBD hemp oil (like on Amazon)  has no CBD, and is good for salad dressing- and you can get plain hemp oil for about $20 for a quart; the “therapeutic” hemp oil can be $50 an OUNCE- for essentially nothing). Hemp oil does have Omega 3 fatty acids, and hemp hearts (I like the ones without the little shells) taste a lot like pine nuts, but much smaller. Those are just flat out food- nothing specifically “magical” about it. Just another healthy fat source.

I’m a disabled RN; I’ve been an RN for 35 years, disabled for 15 years, where I’ve been my own full-time job.  Anything used to relieve symptoms MUST be consistent.  And I can’t get that with commercial medical cannabis products.  Some of the CBD companies out there are isolating other cannabinoids (CBG and CBN are two I’ve tried, and CBN has been good for sleep, though I only take it if I’ve been having trouble sleeping for a few days. Some brands of full-spectrum are out there- just don’t generally get the amount of each cannabinoid, so I’m not a fan of those). I don’t need a state-issued card for CBD. I get it online. Just like any herbal supplement.

And that’s what they are.  THC and CBD are not medication- which left me confused when talking to my pain doc during my visit. When I got home, I realized he hadn’t seen the way I’d printed out my list of medications and supplements, putting the CBD in the same area with vitamins and Co-Q 10, under a line of *****, separating the medications from the supplements.  The person who filled out their form with the list I’d typed up didn’t need to keep the typed one- so I agree with my doc, but I was scratching my head for a few minutes, as it seemed like he felt I considered THC and CBD to be actual medications. I agree with him on the characterizing THC and CBD as supplements. They are not medications. People use them like medications, but there are no studies proving efficacy, side effects, contraindcations, doses, longterm impact,  etc- and that’s what those of us who have used medical cannabis signed up for.  We knew it was an experiment, but desperation will lead people to anything that could be a source of hope.

I needed to try it. I wanted the hope of something different. And now I know.  For me, THC is unpleasant, and ineffective for what I needed it for.

The Life of Cancer

When I was diagnosed with acute promyelocytic leukemia (APL) in late March 2010, I didn’t realize that cancer has a life of its own.  I expected to go through chemotherapy, have regular follow-up care, and move on. Done.  I’m already disabled, so I didn’t really think that cancer was going to be all that bad. I had been told that the  permanent remission rate for aggressively treated APL was upwards of %90.  I’d be fine.  My standard reply to many of the reactions to my having cancer was “this is the least of my problems; they can fix this”, and to some degree that is still true. But overall, I considered myself very fortunate.  There was a treatment that could really fix me. Not everyone with cancer is that fortunate.

I’ve been off of chemo for about 1.5 years (after 19 months of constant IV or oral chemotherapy, including 50 doses of arsenic IV… 2 25-dose cycles when I’d be in the hospital on a cardiac monitor during the infusion and then go home).  Chemo itself took a toll on my body and the other disorders I’ve got (diabetes- my blood sugars were absolutely nuts on chemo- much higher than usual; fibromyalgia- chemo has side effects involving muscle pain; dysautonomia- my heat intolerance got worse, and my heart rate and blood pressure have been more irritable).  I’ve had ‘chemo brain’ where I’m foggy sometimes, have trouble finding the right words to express myself when I’m speaking, and some memory issues.  Some of that has stuck around, and I’m not sure if it will improve. The blood sugar situation is getting much better, but the dysautonomia is still not good. My memory and word-finding are still not quite right.  But I’m alive. That’s good enough.  I can figure out how to deal with the rest.

I hadn’t expected the ongoing low grade anxiety about relapse and potential metastasis (yes, leukemia can spread).  A few months after stopping all chemo pills, I was scheduled for my annual girly exam. During that, my test to check for blood in my BM came back ‘somewhat’ positive, so I had to have a colonoscopy and upper endoscopy to check for any problems there.  While they were at it, they snatched me up for a mammogram (I’ve never been good at going in for those with any regularity), and because of worsening headaches, I ended up with an MRI of my head.  I also had a weird skin lesion that I needed to get biopsied, and had my first full body skin check by a dermatologist.  A lot of me was scoped, scanned, scraped, or squashed.  Fortunately, everything came out OK.  That was a huge relief.  I have never been all that paranoid about my health (I’m to the point of not reacting much to another diagnosis- I’ve had so many of them), but after a cancer diagnosis, things are different.  It has its own life, even when it’s not there.

I’m learning to relax a little bit, but I won’t ever feel like I’m really ‘safe’.  It’s coming up on three years since the oncologist told me I had leukemia. Had I not gone in for my annual diabetic lab work, I never would have known that my CBC (complete blood count) was absolutely trashed. It took two weeks to get in to see an oncologist, and he scheduled my bone marrow biopsy for a week after that; APL is generally fatal within a month of onset if not treated… and I was sort of put off, even though my lab work had been sent to the consulting oncologist.  As it was, I went to the ER with some shortness of breath the weekend before the scheduled bone marrow biopsy; with a history of  severe blood clots in my lungs, I’ve been instructed to always have anything ‘odd’ in my chest checked out immediately. Had I not gone to the ER,  I would have been another statistic of those who are diagnosed on autopsy, or literally days before death (I know of two people who had that happen last autumn…a 29 year old anchorwoman for the local NBC station, and an 11 year old kid; both were gone within 2 days of being diagnosed).  I’m lucky, and I do realize that.  And, I also know that early detection is the key to the best outcome… so I’m a bit on guard.

I also hadn’t realized how aggressive APL is when it’s not treated until the death of the local news anchor.  I was stunned that I was alive, and she had died just 2 days after she’d been diagnosed.  That was a mind-blower.  I had sort of coasted through chemo and not asked a lot of questions about how bad things were. Looking back, and knowing what my blood counts had dropped to (I got daily updated counts on a card in the hospital to keep track of things), and the purpura (little purple dots of bleeding under the skin), I now realize how ‘in trouble’ I was.   I now realize why there was a sense of urgency during those first days in the hospital (I was there for 6 weeks after going to the ER for the shortness of breath).  I understand why the ear infection was such a big deal, and why it was monitored so closely when it started to spread into my neck, and I had a  moderately high fever but very few white blood cells to fight infections. I was put on vancomycin and gentamycin for five weeks... That’s a long time for any antibiotic, and those two are heavy hitters.

So maybe I’ve gotten a little scared.  I might be a bit late in finally getting spooked, but it is what it is.  At the time, I was more focused on just getting through it.  Now, I’ve got the luxury of having things being stable enough (for my normal abnormal  self) to look at what had gone on.   I hope and pray that I’m in that %90+ that will never have a relapse.  I’ve learned to appreciate life a lot more, and not sweat the small stuff… and what is considered ‘small’ has been redefined many times.  As long as I can get through something, it’s not worth the energy to freak out over. The unknown is another matter.  And I have absolutely no control over that.

I know that I’ve survived all of the stuff that has gone on in my life for some reason. I’m not sure I understand what that purpose is yet- but I’m working on it.  I see a fairly long future, even with the assorted medical issues I’ve got going on.  It’s not like I’m spending my days thinking I’ve got the cancer back again.  But, I do wonder about the life my cancer had…is it gone for good, or is it dormant and waiting to come back?  Some may see that as fatalistic.  For me, it’s just life after aggressive leukemia and the many months of chemotherapy.   I’ve heard others who have had all sorts of cancers have the same feelings of ‘what next?’… it helps that I’m not alone with that.