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.

What You Do IS Enough- COVID-19 Has Tied Your Hands

To all of the essential workers- 

You can only do what  you can do.

You are making a huge difference .

You are helping keep things from getting worse.

You were not given any choice in how this virus works.

You can’t control how it impacts a specific person.

Even what feels like a small kindness might be the last kindness someone knows- and THAT is huge.  

This will not last forever, but your work will. Every time you hold a hand, or wipe a tear, every time you give someone news – good or bad- the way you do that will be what someone remembers about such a horrific time.  You make the ultimate difference in the healing of a family who wasn’t able to be with their loved one.  For those who are working in non-medical areas, your work keeps those at home safe. You keep more people from getting sick.

That is one incredible legacy.    This one ratty, disabled RN would be proud to stand with you any day of the week. YOU are redefining the industry where you work.  And you are not forgotten.

“What lies behind us and what lies before us are tiny matters compared to what lies within us.”
– Ralph Waldo Emerson

Your Words Matter, Lady I Knew From My Childhood Church

Written after a stunning and disturbing conversation with someone I’ve known for over 45 years.  The person I talked to that day wasn’t anybody I recognized, and it jarred me to my core. I’ve cried so much over this.  But sometimes, it’s time to wish someone well, and exit the toxicity.  I wonder how much of any of our past interactions have been masked to hide the intensity of the divisiveness.  It’s so sad.  I wrote the letter not with an intent to mail it (no point in sending something to an elderly woman with a healing husband in a nursing home (that has COVID-19) who sees nothing wrong with her views, and compares anyone with differing views as dirt on the bottom of her shoes that she wants to scrape off- there’s no reasoning with that).  Evidently I don’t have that same right to MY views as she has to hers.  I’m dirt on her shoes- not because I’m a Democrat (I’m not registered anything since mid-2016), but because I don’t tow the GOP line. She told me she doesn’t use the computer (which she’s said before), so this seemed the safest place to vent so I can sleep again.  And if she finds it, I hope it is something that gives her an idea of the weight of her words… not to be mean.

Dear W,

I hope you are well, and that H has been able to get the rehab services he needs- and has been safe.  I know this has all been so stressful. I can’t imagine the concern and sleepless nights.

Now, comes the painful part, but written in a tone of compassion and well wishes always. I’m not angry with you.  A bit stunned, and very hurt, but not angry. If I didn’t care, it wouldn’t be worth writing, even if just to blow off steam.

I will ALWAYS be SO very thankful for your friendship when I was younger.  You made a difference. I am truly grateful.  After one of our last conversations, along with one in early 2017, I am not sure I know you now. Maybe I never really did, as so much was formed on that when I was a kid.  When you said you considered Democrats to be the same as the dirt at the bottom of your shoes that you wanted to scrape off, and the 2017 reference to Mrs. Obama as the ’N’ word (I won’t use it- it’s vile and never justified in my view), I was stunned. I didn’t recognize you as someone I knew from the evangelical church I loved growing up. That was sad. It tore through my heart.  It made me question every conversation and interaction we’ve had.  How did I not know of such intense hate?

I may not like or respect Trump, but I don’t consider him to be “dirt on the bottom of my shoes”.  My specific prayer to God about Trump is “Lord, please help Trump be the president You want him to be.”.  Essentially, thy will be done.  I don’t consider him ‘dirt’, and hate takes too much energy; I have better things to do with my time. All I heard from you was what sounded like a hateful rant about something with no specifics other than a generalized view of  Democrats.  Nothing specific, just a tone of voice that was like a knife dripping with venom.  That’s not the person I grew up knowing.  And, I also thank you for that, because it’s made me more aware of my own views on a few things. And one thing is certain; I won’t initiate contact again. I won’t discuss this. It’s clear that it’s pointless.  You aren’t the only one whose blood pressure is a problem with stress. Mine can knock me unconscious. I won’t interact again with the comments I heard.  I don’t know where that came from, but it’s not from God.  I can see things I don’t respect without hate.  I don’t respect Trump, but I certainly don’t hate him.

I’m so thankful for the Bible, and the wisdom and guidance it so consistently provides.  I’m thankful that the Bible talks so much about love, and treating others with compassion and kindness. I love how it lets us know that God knows our hearts.  I love how it helps me when I feel like I’m completely alone.  I love how it is infinitely more important and stronger than humans in its influence in my life. I love how growing up at the old church shaped me;  those years were amazing, and have been the core of my being for as long as I can remember, as were my summers at camp on the staff.  

I’m not a teenager anymore, by a longshot. I have very specific reasons for my views, and base my decisions (as much as possible)  on compassion (and those who exemplify it), and mostly “as much as you’ve done to the least of my brethren, you’ve done it to Me.”.  I focus on “faith, hope, and love; and the greatest of these is love.”  I fail often in my goals of exemplifying the Fruit of the Spirit and the description of love in 1 Corinthians… but I am working on it daily. I have to focus on what God says. He’d never condone shunning people simply because of different views. HE gave us free will. Who are we to demand otherwise?  He uses all who are willing.  Face it, there were some sketchy folks He used for His purpose in the Bible. He sees our hearts.

I will always disagree about Trump’s “integrity” and I know you’ll never see any other view, so there’s no point in any discussion- and I wasn’t looking for one with a single comment that wasn’t an attack on your beliefs. And I won’t be a part of the hate towards any group of people. God created those people, too.  And what if they’re pushed away by Christians? How does that give glory to God?  I will always defend your right to your views. And I won’t be shut down with comments about your blood pressure; you’ve used that before.  If it’s that fragile, we shouldn’t speak. I don’t have any interest in  having to censor myself with someone who had been a close friend.  I guess I was expected to have your views.  When I made the very superficial, flip comment that led to that rant, I was caught off-guard with the intensity of your response- and yet it’s your view, so I have to accept that as how you truly feel. I respect your right to it. I don’t have to agree with or respect it. Or put myself in the position to be blind-sided again with the negativity of excluding anyone who thinks for themself.

I have met so many types of people as a nurse, and I am so thankful for that.  People are not simply labels or categories. They each have their own views that are not stereotypes- there are shades of gray, not just black and white. Many are surprising. Regardless, it’s not my right to judge them.  The plank in my eye is big enough to keep me busy; I don’t have time for the splinter in someone else’s. 

I’ve met Christians among the LGBTQ community. I’ve had good friends of many races. I’ve met “WASPs” who are some of the  most cold, superficial and negative people I’ve heard (often on TV).  I’ve known people who agonized over deciding to have an abortion, and felt such compassion for the magnitude of that decision. I’ve met people who I have nothing in common with who were kind and inclusive. I have family (biological & adoptive on both sides) who are mixed race, gay, and non-believers- and they have been incredible to know. I thank God for them, and the chance to be kind, and not the Christian they expect to find.  God meets people where they are… and I try to do the same, as best I can. He uses defective humans for His Divine plans… and I can only hope I am who He wants me to be, especially with my sponsor kids.  My purpose is to be used by Him… not to be a verbal punching bag for hate. 

I’ve met Christians who see love above all, and some who are basically in it for profit. I’ve met non-believers who have shown me great compassion.  I’ve known people (directly or ‘second hand’) who were pure evil.  And I’ve met one in particular who altered my life permanently when I was 23.  I’ve forgiven him. It doesn’t condone or excuse what he did, but it’s not my fight to punish him. Forgiveness is also an act of obedience. It’s the least I can do in gratitude to God for letting me survive that day. I focus on protecting others from Numbnuts every 3 years with parole protest letters- and I pray that the prison chaplain gets through to him.

I’ve met many people who were turned away from Christ by Christians.  My goal with my sponsor kids is that they see that they are loved (including the Muslim twins in Bangladesh). I am working hard to give them sound Christian support, and have gotten child and teen (boy’s and girl’s) study Bibles to use with little lessons in each letter I write to them. With that, I ask for the help of the Holy Spirit.  Kindness is free, even when the specifics aren’t clear. It costs us nothing but the desire to share it.  IF not, then the parable of the Good Samaritan was just a story, and not a lesson.

You said I only want to see “the bad”.  With the things I’ve been through, I’ve always tried to see the good, and apply Romans 8:28, because I do believe that God can make good out of anything, if we let Him.  I think that comment hurt the worst.  My greatest earthly happiness comes from people doing well, and doing kind things for others. I cry tears of joy when someone does well (I’m a mess during the Olympics, no matter who wins- their story and hard work led them to their dreams).  It’s amazing I don’t see only bad. The murders, rape, leukemia, disability and not being able to work as a nurse, and many other things would give me reason to do so.  But that’s not who I am. I wasn’t brought up to look for the bad.  But you think that of me? After 45+ years?  Then you don’t know me at all. I question everything about our ‘friendship’ with that comment. 

When one of my sponsor kids makes the drama team, my heart explodes with joy for him. When the twins start to feel comfortable asking me questions, I am so happy they feel safe to do so.  When another asks me to pray that his goats keep “reproducing well”, I’m overjoyed that he has a little ranch going (he’s 8).  When my sensitive one needs reassurance from me that I’m proud of her, my heart aches with gratitude that she is doing well.  I don’t see their ‘conditions’.  I see that God created these 8 kids with amazing potential. (Edit: sadly, I had to adjust my budget considerably, and have 5 of the kids that I still sponsor, but pray for all 8, and was assured the three I had to ‘give back’ would find sponsors- and that is my prayer). 

I don’t see conservatives or liberals. I see a country failing to see the big picture. We’re here together. Everybody has to make choices about what is worth destroying the country over. I don’t see anything worth that.  And prophetically, the US will fall. We’re on that path. And God will deal with things as He sees fit for His ultimate plans. In the meantime, I just want to be the best I can be with His help. His opinion is my beacon. HE has everything under control, even if humans have done their best to tear things apart.

I was hoping that hydroxychloroquine would be a ‘game-changer’, and it was no matter that the idea was pushed by Trump. What mattered was that it would be help to those suffering.  Like everyone, I’m so much more than my views on politics- and they vary by the issue-not the party.  Yet my non-GOP views have made me dirt on your shoes.  I can’t stick around for that. I have to let you go. I’m glad for the clarity. You said what you feel. Let the chips fall where they may.  I can respect your right to your views, even if my difference of opinion is in your crosshairs. But I won’t engage with venom. 

I will always wish you, H, and D all of the best in life. I will be glad to see you in THE place of no more crying or pain when we meet again.  It’s where so much of my hope lies. It’s where the people who gave me a life of church values are waiting.  It’s where the baby I lost is- in a place where its conception by rape won’t matter. It’s where a lot of people I’d expect to see will be, and very likely some I didn’t expect to see, and some I expected to see, but won’t… because I can’t see their hearts. But God can. He knows why I believe what I do, and why I think how I think, before I even think or believe anything. His omniscience and omnipotence blow me away, as does His undeserved Gift of grace, mercy, compassion, and great hope of everlasting life through  Jesus. Take care of yourself, and know that you will always be in my prayers for peace, health, and safety.  I absolutely did not intend for one flip comment to trigger such damage.  For that I deeply apologize. 

Until the time when the earth is long in the past, where a thousand years will seem to be but a minute, I say goodbye.  The pain of that conversation isn’t fixable. And I, again, wish you and your family everything good.

Message to Young Nurses Working With COVID-19 Patients

I saw the news of young nurses (those who graduated well after 2000)  impacted by the storm of COVID-19 patients. They never knew what it was like not to have Universal Precautions as part of daily ‘norms’ at work.  They’re scared and angry, and that is so very understandable.  In normal times, all of this would be absolutely unthinkable.  But these are not normal times.  This is a global situation that was not fully appreciated until it hit US. Many warnings had been issued over the last several decades.   Mistakes were made.   In the US, we tend to think that we’re immune to things that happen in other parts of the world.  While 9/11 erased a bit of that, it has never hit us in a medical battle like this, for the vast majority of people alive now.  Viruses don’t care about what country they’re in.  Every country on the planet is trying to get equipment, from PPE (gloves, gowns, masks, face shields, etc) to ventilators.  EVERY. COUNTRY.  There is little in the way of  inventory to purchase.  Add that the US government is outbidding states’ governors, and it’s a total cluster.  I’ve been an RN for 35 years, though have been disabled for many years now. I have the ‘luxury’ of watching this, but wish so much that I could be there helping. It goes against everything in me to not be of use during this time. So, I write. It’s all I have to offer.  My mom’s grandma died in the Spanish Flu of 1918. Pandemics influenced my family in how my mom’s mom did NOT cope with the death of her mom. Her father died a year later.  She stayed broken.  She raised kids as a broken mom. None of this is “just” the current situation… there will be collateral damage.  But we have to protect the caretakers AS BEST WE CAN with what PPE is available. Now. 

Time speeds up as you get older, so this may sound like ages ago, but it’s really not.  In the mid-80s, AIDS was still relatively new, not well understood, and another cause of fear and much discrimination. It was different, as there were higher risk groups. COVID-19 just needs a breathing body.  We didn’t have Universal Precautions until 1987. There was typically one box of gloves at the nurses’ station, and those were only for “Code Browns” (a poop situation beyond the ability of one person to deal with) or massive bleeding- and that was at the discretion of the nurse.  This is when I started nursing.  It’s just how things were.  We did have isolation carts for AIDS patients, with gowns and gloves.  Masks were only used for suctioning, and face shields weren’t even imagined. I don’t remember ever having protective eyewear.   We gave IM and IV meds with syringes that had needles. Not everybody had an IV pump… and Dial-a-Flows were rationed.   We were expected to be careful.  We also had up to 14 patients on an acute neurological/neurosurgical floor on the night shift PER NURSE.   It wasn’t until 1996 that Universal Precautions became “standard precautions”, and were considered part of basic care.  I taught infection control at a nursing home in the mid-90s.  Back then menstrual blood wasn’t considered a risk, and the guidelines were “if it has not saturated the pad to the point of dripping, it can be disposed of in regular trash cans”, which stunned me back then. Now, I can’t imagine putting any sort of blood in the regular trash.  Things change.

Governors are doing all they can to get enough PPE, but when it will arrive isn’t set in stone, especially with the “eBay” manner in which they are having to purchase supplies.  The feds aren’t  looking out for anybody on the frontlines. So it’s time for ingenuity and remembering that these are not normal situations.  Normal rules are out the window in a crisis.  This is more like M*A*S*H than 2020 hospitals.  Mentality has to adjust. Some conservation now may mean even more critical availability later.

It troubles me a lot that so many people who are dealing with this crisis are going to develop (if they haven’t already)  PTSD.  The repeated stress and life-altering/life-threatening situations does something to a person.  Please reach out to someone when (not if) you are overwhelmed.  Remember that this will not last forever.  The overall percentage  of people in the US who have this now is still statistically insignificant (a bit over 331,000 positive cases right now… with a population of 330M in the US, that is %0.001).  The folks who have this are not in any way insignificant, nor is their suffering or the loss felt by the family, friends, and coworkers of those who die from COVID-19… but from a pure numbers standpoint many, many more people are OK.  With that same 331,000, 9441 have died- that’s %0.03 of those who are positive. That’s 33 times less than %1.  Just of those who are positive.  The death rate is %0.0000000003 of the total population. I know you’re still swamped and getting slammed. But feeling like ‘everybody’ is sick can be another stressor.  For those in hotspots right now, I realize that how it feels is what is hard, because it seems so non-stop.  It will get better. Not today and not this week, or maybe not even this month… but it will get better.  We will know a time when this isn’t all over the news anymore.  And hopefully, we’re better for it.  This can’t happen in vain.

So, nurses who haven’t known a time without standard precautions, hang in there.  Bring your ideas to your managers about how to conserve PPE.  When all of the patients are positive for COVID-19, how many times do you need to change gowns?  I know reusing some things sounds absolutely counter-intuitive. I’ve seen some creative things on the news from the nurses in the thick of things.  You can change how this goes with your ideas.  Hoping for more PPE is fine- just don’t expect it on a timetable that is “normal”.  Nothing about this is normal.  Including what you have to do as a nurse or other caretaker.

Would I want to work with less PPE?  Absolutely not. But there IS no bounty of  PPE now- it’s all rationed, when it’s available.  And it’s because every corner of the country is going to see this virus hit close to home.  The hotspots need things now.  Until it gets there, what else can you use? How can you change the policies for a catastrophic influx of patients?  How do you stay safe?

Time Buffers… It Does Not Heal All Wounds

Four years ago this morning, my dad called me at around 8:00 a.m.  He knew I generally slept until noon (up all night), so I knew it was something different and serious before I answered the phone.  He told me he couldn’t walk right, and asked if I could come to the house and see what I thought (have been an RN since 1985, though disabled for the last 15 years- I keep up with medical stuff by keeping myself alive).  I asked him if I had time for a shower, anticipating we’d be going to the ER, and he said yes, but don’t take too long. Dad had been having back issues and some weird symptoms on and off since the November prior to March 3, 2016.  He needed a better work-up, and at this point, the ER was our best bet.

I took my shower and packed my meds/insulin figuring that I’d be away from home for hours.  Then I drove to the house.  I wasn’t really prepared for what I saw.  Dad stood up when I came down the hallway after letting myself in with the garage door opener I kept for checking his house when he was on vacations.  Dad was standing next to the bed, with ‘balance’ that looked like someone trying to stand on an inner tube in a pool.   He had no clue where his body was in space (proprioception problem).  I told him to sit down, and I’d get what he needed.  First order of business was breakfast, even though I suggested he wait because of any lab tests  that might be done, but if I didn’t feed him, he wasn’t going to the hospital.  OK… food first.  I don’t even remember what I got for him. I do know it was in a bowl, and doubt I made oatmeal, so likely cold cereal.

His lady friend (not going into detail about her, as she was a self-serving “care taker” who was handy on occasion) came over and got some of his belongings together to take in case he was admitted.  I wasn’t going to take him home in his condition, so started getting my speech ready for that conversation with the ER doc.   I got his electric shaver and warm washcloth, as well as his toothbrush- he wasn’t going anywhere ungroomed.  Then I told him I was calling 911, since I knew there was no way to get him in and out of the car safely with what I saw of his balance issues.   He didn’t argue.  I knew he was scared.

The ambulance took some time to get to the house, as his address was in the county (by one block), and the station responsible for sending emergency help was several miles away.  They came in and got him loaded up, and I told them in no uncertain terms that we were to go to a specific hospital that wasn’t the closest.  His vital signs were fine, and he was not in respiratory, cardiac, or any other distress physically.  They agreed.  I followed in my car (and lady friend took her car).

I told the folks at the ER that I needed to be back with dad, since he tended to downplay things to strangers.  They needed to know about the months of erratic symptoms.  They also needed to know that dad would not do anything medically unless he could ask ME if it was legit.  He used to say he was getting a return on his investment in sending me to nursing school.  They let me back as soon as they had him gowned up.  He was terrified.

As with any ER, it takes time to sort through everything and get testing done.  We were there for at least 9 hours, in which time he had several tests done, including an MRI that almost didn’t happen because of dad’s claustrophobia.  He almost changed his wishes for a traditional casket burial because of claustrophobia.  They sedated him (a Benadryl made him loopy for a couple of days, so the stuff they gave him IV really made him blotto, which is what he needed so the MRI could happen).  They found some strange lesions on his spine- not what we were expecting.  There was talk of sending him home (alone), and I pitched a semi-dignified fit.  They said that the ER was for finding problems – and not necessarily to admit people. I told them of his living situation, my disability in not being able to care for him adequately when he couldn’t transfer safely, and the other safety issues in sending him home.  They did admit him, and he never saw his home of 40 years again.

I’ll never forget that day, or the 19 hours on April 3-4, 2016, just a month after he was admitted, and going a rehab facility that repeatedly blew off his complaints of abdominal pain.  On April 4, 2016,  he died after a diverticula that hadn’t been diagnosed ruptured and caused catastrophic infections in his abdomen, extending into his bladder and  filling it with gas.  He was a great dad- and I’m so fortunate to have ‘landed’ with him when I was adopted at 10 days old.  He is still missed daily, though it’s easier to remember the good and goofy stuff.  My mom died in 2003, and I couldn’t anticipate the devastation of losing my last parent, and the one who was constantly looking out for me and my best interests starting from that first day in 1963. I didn’t grow  up with siblings.  My mom did things in her own way to show her love, but dad was more open about it. We had a great relationship when I became an adult, and I could tell him anything.  When I was younger, I didn’t appreciate his work stress, or the ways he made sure that all vacations included things just for me along with general sight-seeing.  He’d go out of his way to make sure I got something special out of each trip.

I now live in his house (was also my home for 9 years as a teenager through nursing school), and I’m so thankful.  I have him, and my mom, in every room of this house, whether it’s some trinket or photo, or memories of things that we did here.  I couldn’t live anywhere else.  It’s home.  It’s my family in a house.  It’s what I have left.

When Death Steals Justice From a Murdered Baby’s Mom

This week, the mother of murdered 4-month old Paul Villareal died after a very brief, and unexpected illness.  She was waiting for the trials to start in early 2020 in five murders, including that of little Paul.  She’d been waiting since 1981 for justice to be within grasp.  She won’t see that day.  Her son Paul’s killer will finally be held to account for what she did to Paul, his mother, and entire family.

Her family is now trying to find the way to pay for the burial their mom wanted, and Paul’s youngest sister is doing her best to make sure that happens, but she needs help. While she didn’t want to ask for help, doing a GoFundMe was the most likely way to get the funding as soon as possible, so she can bury her mom, who did not want to be cremated.  I’m now asking for help as well for this family.  They’ve been through so much.

No matter how much or little folks can help, it all matters, and I know personally that the family is extremely grateful and humbled for any help.  I’m in regular online contact with Paul’s sister. This is legit.

 Whether or not you can donate, please pass the link along : 

https://www.gofundme.com/f/mom039s-cemetery-expenses

For those who are unfamiliar with the hell Jones put dozens of families through in the early 1980s, I’m including an article by the author of a book by the same name, “The Death Shift”, which is considered by the families to be the most accurate book on the hell they went through. They were interviewed for the book.

https://www.texasmonthly.com/articles/the-death-shift-2/

Jones had been due to be released in March of 2018 because of the “mandatory release” law, that was amended in late 1987, and later excluded violent offenders.

By Elizabeth Zavala of MySA— after the death of Chelsea McClellan’s mom, who was fighting so hard for the additional indictments, and a huge support to the families.

https://www.expressnews.com/news/local/article/Moms-keep-up-fight-despite-loss-of-ally-14423719.php

More background on Jones and the alleged murders of 46 babies/toddlers:
https://abcnews.go.com/US/nurse-suspected-killing-46-kids-prison/story?id=19852141

https://www.tpr.org/post/evidence-destroyed-hospital-cover-needed-genene-jones-prosecution

Well, No More Palliative…

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.

“You Look OK… “

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
– TMJ
– 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
–  TIAs
–  falls
–  hydration issues
–  kidney injury (related to dehydration)
–  pyelonephritis
–  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?

 

 

 

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

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

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

 

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 that is the  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, Sunsoil, and ThoughtCloud- they have third party testing of their products, which I now view as mandatory for me.   I asked Charlotte’s Web about the lack of clear labelling on the bottles, and got no reply.  THC side effects can be muted by CBD – which is a good thing.  I thought I was taking 50mg of CBD/day.  I was getting half of that, with a THC dose of 30-50 mg/day.  The THC built up in my system, and ended up with symptoms (along with a dicey gallstone at the time) that required multiple medical tests, surgery consults, scans, ER visits, and ultimately caused the beginnings of hyperemesis cannabinoid syndrome.  I only puked once- and that was the clue that led to figuring out what was going on.  (THC has a VERY long half-life, so doesn’t clear for about a month- but if folks keep using it daily, like medicine, it just accumulates; it’s not dangerous per se, but causes a lot of GI distress). I had been scheduled for surgery… what I needed was accurate info on the CBD.

Most of the time, I use the CBD softgels.  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 cleared up by about %95; with less THC, it has come back somewhat.  The clearing 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. I hope to use them in an aromatherapy diffuser.

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 dog to that (or get her stoned), bug the neighbors, or stink up my house.   I also have distillates of CBD to use with cooking, should I ever get some culinary bug after my ankle heals.  Watch “Bong Apetit” on Viceland if you want some great ganja cooking tips.

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

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

2.5mg THC tablets.


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

CBN and CBG are also available now in ingestible oils. CBN is great for sleep, and CBG has anti-inflammatory properties.  I can’t take Aleve/Motrin because of kidney disease, so these have been great. I like the products from ThoughtCloud.  Not cheap- but worth the relief.

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.

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.