Your Arguments Don’t Make Sense and I’m Still in Pain

I’ve been in a funk for the last month. Which is an extension of the funk I’ve been in for the last six months, which is an extension of the funk I’ve been in for the last few years.

I’m in pain.

This isn’t new, of course — pain started for me in my early 20s with my ulcerative colitis, increased with my diagnosis of ankylosing spondylitis in my late 20s, jumped higher still in my late 30s with the development of Crohn’s fistulas, pushed even higher in my 40s with degenerative disk disease in my neck and the spread of my AS to my shoulder joints, then reached what I thought was a complete tipping point a few years later with the development of peripheral neuropathy from my diabetes. And then I developed fibromyalgia, which although not present every day of the year, comes in several-month long waves where it takes over every. single. joint and muscle. Add that to the everyday pain I was already suffering and I thought I was going to lose my mind (spoiler alert: I’ve already lost my mind and I don’t have any more to lose).*

IMG_0583

I hear the gallop, gallop, gallop of my heart.

My pain was so bad that beyond my subjective reports of how bad it was (which, to be honest, don’t amount to a hill of beans in the medical world), that my blood pressure had gone from its previous normal of about 110/70 to about 140/100 and rising. We were starting to have conversations about blood pressure medications.

Instead I convinced my family doctor to refer me to a pain specialist and in the meantime, we switched my pain medications to a different and more powerful narcotic.

Suddenly my blood pressure was normal again.

This isn’t a coincidence. Blood pressure is a pretty standard measure of pain in hospital settings: It’s one of the reasons they take your blood pressure in the ER and then ask you if it’s different compared to your ‘normal.’ About five years ago I had pancreatitis and refused pain meds and my blood pressure started going so high that they gently but firmly insisted I accept morphine. It settled back down. My pain decreased. Until the fibro started and things got tricky again, of course, and I asked for more help.

Pain causes stress on your body. That emotional stress causes stress on your heart. This is one of the reasons why it is so important to manage pain. In spite of that, there has been a growing movement in the pain management community to turn away from narcotic painkillers in chronic pain management care.

The goal of this new movement is to focus on the quality of life of the patient and the changes which can be made to accomplish that (rather than focusing on completely extinguishing pain). These options include non-narcotic drug options (in the case of neuropathy and fibromyalgia – anti-depressants such as Cymbalta or anti-seizure medications like Lyrica), exercise, psychotherapy (cognitive behavioural therapy), group talk therapy and a variety of other techniques. The goal of the non-drug therapies is not to eliminate pain, but to learn to live with the pain.

Actual advice from my pain doctor:

NON-DRUG THERAPIES

“Stronger pain medications exist, but since they are unlikely to work, we will not give them to you.

Narcotics have the potential for abuse and have withdrawal symptoms.

“If you talk to others about your pain, at least you won’t feel alone.” But you will still feel pain.

“Physio, massage and talk therapy are temporarily helpful but some people still appreciate them.” Of course the benefits are completely defeated by the stress and pain of the ride there and ride back, and emotional stress of dealing with yet another doctor.

DRUG THERAPIES

Anti-depressants don’t work for everyone, but they might work for you so you should at least try them.

Reads black box warnings: Lyrica has the potential for abuse. Use with caution.” “Many Cymbalta users experience serious withdrawal symptoms.

“Yes it’s possible that taking Cymbalta could send you into a manic episode, but we can deal with that when it happens, and maybe give you other drugs to counteract that.” “No I can’t see you every few weeks to monitor you.”

“Yes some patients on Lyrica gain weight, but not all and it’s not that big a deal.” Except that doctors check your weight and BMI every visit, so clearly they think it is important. Zyprexa made me gain 40 lbs. I have diabetes. And joint pain that is worsened with weight gain. And I also suffer from body dysmorphia triggered by weight gain. But no big deal.

*

Doctors: You are not making sense. Get your arguments straight, stop applying double-standards that are associated more with the stigma of prescribing narcotics than they are with the actual risk (or benefit) of narcotics to the patient. You can’t use one argument against narcotics and then ignore the exact same argument when it suits you.

All you are telling me that it creates an easier standard of care for you.

/rk

*This roadmap of pain doesn’t include all the other little side trips along the way like pneumonia, asthma, costochondritis, bursitis, general fatigue of autoimmune disease, vitamin D, B12, and iron deficiencies, pernicious anemia, bipolar disorder, anxiety, OCD, major depressive episodes, schizoaffective episodes, Achilles tendonitis, brain fog, POTS, possible Sjogren’s (still waiting on that one), yadda yadda yadda.

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Pot Meet Kettle

WHEN HIPPOCRATIC AND HYPOCRITICAL COLLIDE:
How NIDA’s anti-marijuana bias is hurting the people it professes to protect

There is a long history of negative propaganda associated with the use of marijuana dating back ~80 years to the film Reefer Madness (1936): A movie which was so comical in its representation of pot-smokers as murderers, rapists and generally depraved individuals, that it enjoyed a re-branding as an exploitation film in the 1970s and was even remade into a musical satire in the 1990s. Not so comical is the continued reticence of federal governing bodies to objectively (and fairly) examine both the negative and positive effects of the drug.

The use of marijuana as a psychoactive drug and for medical purposes is hardly new; evidence shows cannabis use dates back at least as far as 2727 BCE. in ancient China, as well as historically in ancient Rome, Greece, the Middle East and Northern Africa. In fact, cannabis’ history of cultivation both as medicine and for pyschoactive effect closely mirrors that of two other crops: the coca plant (cocaine) and the opium poppy (morphine, codeine, heroin and oxycodone). Unlike those other crops, there has been a persistent stigma associated with marijuana use and cannabis research that has stood in the way of extensive unbiased research.

http://www.drugwarfacts.org

This is curious, considering that the potential negative effects (addiction and withdrawal properties specifically) of cannabinoids compared to cocaine and opioids/narcotics are significantly lower.

Research into the coca and poppy plants has been thorough and extensive (in spite of the higher risks associated with their derivatives) and the results have yielded numerous medical advances, with applications in multiple areas of medicine including pain management, eye and nasal surgery and anaesthesia.

Objective research of cannabis efficacy is harder to find. This is not to say that there has not been any research performed, or that those studies in themselves are unreliable. The issue is moreso that studies are forced in large part to make use of anecdotal evidence and patient self-reports, due to limited availability and access to medical marijuana for research.

The National Institute on Drug Abuse (NIDA) currently holds a federally-granted monopoly on the U.S.’s medical marijuana supply, with a laboratory at the University of Mississippi being the only facility permitted to grow medical marijuana. They also oversee an estimated 85% of the world’s research on controlled substances. The effects of this on the research of marijuana both domestically and abroad are complicated: NIDA exerts control both over what studies are approved for research, as well as what types of studies are approved.

[… read the rest of my essay at Medium.com]

/rk

Going to Extremes

I am an addict.

Managing my addictions is not quite as simple as managing my ‘drug of choice.’  I can turn anything into an addiction.  Drugs and alcohol?  Certainly.  Been there, done various kinds of that.  But I can turn anything into a drug.

It’s not an intentional thing, but I am vulnerable.  I am blessed with a genetic pre-disposition for both addiction and mania.  And even when I try to manage the known enemies — when I try to avoid excesses of drugs, alcohol, coffee, sugar — my brain has a way of filling that void.  Of turning interest into obsession.

Anything to turn up the charge.

I am never clear on whether it is the mania that grows from the obsession, or whether obsession breeds mania.  I only know that the second I become immersed in a thing and once it captures my undivided attention, there is no turning back.  I become consumed.  I cannot pace myself.  I can’t not do it.  Time away from that thing is an irritation and makes me anxious.

I do it with people.  I do it with activities and projects.  Until the inevitable day that I crash and burn.

Some of these episodes are short-lived, like the time I pulled an all-nighter in my early 20s determined to build a scale model of my boyfriend’s motorcycle for his birthday.

Others can go on for months:  What started out as a half-hour on my exercise bike a few times a week rapidly became spinning for 5 or 6 hours a night, anorexia and a 30-lb weight loss in the space of a few months.  And then there was the time I renovated a rental house from top to bottom, including ripping out all the carpets, tearing down wallpaper, refinishing the floors and ripping out the kitchen cupboards.  I was also rescuing, (hoarding) and refinishing furniture at the same time as part of what I imagined to be my way of making the world more beautiful and solving the landfill crisis.

I have done this with people too, and it’s one of the things that keeps me from forming close friendships.  Whether romantic or platonic, when that rush of adrenaline starts, I am prone to go to extremes.  I struggle to hold back my feelings.  I have made mix tapes, sent flowers, bought gifts and written long elaborate letters.  In my overzealous determination to get to know everything about the other person and drink them in, I can be (I imagine) quite intimidating.

And so I have to take care.  I have to take care not to take notice.  Not to over-examine.  I struggle to remain casual about things.  Not to check my weight on the scale.  To move, but not to exercise.  To be crap at housecleaning.  To let people take the lead in relationships.  To not keep lists.  Because focus becomes hyper-focus and it tips the scales into obsession and mania.  And mania can kill.

But.

There is always a but.

Writing is an obsession.  And it’s when it becomes obsession that I get results.  Where I suddenly have drive.

I don’t know how to resolve those two things.  

I know that mania is unhealthy.  I know that obsession breeds mania.  But the high that comes from writing is what keeps me going.  Writing gets me high.  Writing is the high.

And it’s more than that.  Writing at this point is both necessary and inevitable.  I have been writing for decades even when I wasn’t writing.  Even when I resisted putting my thoughts down on paper out of fear and some misguided deference to my journalist father, the words were still writing themselves in my head.

The obsession was still there.  It didn’t disappear or waver.  I wasn’t controlling anything by locking it inside.  The dam had to burst sometime.

So now I write, and play a dangerous (and dangerously satisfying) game of control — letting the stories out one-by-one, controlling the rate of flow, so none of us drown.

/rk

The Apartment

After my father’s book sold, he suddenly had money.  A lot of money.  According to him he was a millionaire, and while I suspect that this was likely an exaggeration, the book did make it to #10 on MacLean’s Magazine‘s national bestseller list.  He spent money like it was in endless supply.  He rented a large office (with a shower!) to work on his next book (a spy novel, which he never finished), and from which to work out various investment deals.  He only carried 20s or 50s in his wallet and dished them out liberally.  He bought a half-million dollar house to live in with his wife and new baby (my half-sister).  And he rented an apartment.

We never discussed why he needed an apartment, but he told me not to tell my step-mother about it.

He also started drinking heavily and using cocaine.

I first found out about the cocaine during a conversation in his car, where I expressed some concern that my brother was smoking (cigarettes).  My father started to grill me:

cocaine“What about drugs?  Is he doing drugs?”
“I – I don’t know.  Maybe?”
“What do they look like?”
“Dad, I said I don’t know if –”
“Do they look like this?!!
And he pulled out a bag of cocaine.
“What?  Dad, no.”
“You can tell me.  You can come to me.  I’d rather you come to me than get it off the street.”

I’m a little fuzzy on the rest of the conversation*.  I think I just changed the subject.

~~~~~~~~~~~~~~~~~~~~~~

During one of my visits to him in Toronto, my father took my best friend and I out to a nightclub.  This was clearly designed to impress us:  he made a point of telling us that it was a member’s only club.  He bought our drinks (we were underage) and we got very, very drunk.  Afterwards, he offered us his apartment to sleep at.  But on the way there, he wanted to stop by his office to grab the keys.

When we got there, he showed us around.  He then proceeded to pour out lines of cocaine on his desk and snort them in front of us.  I think he offered us some (again, my mind gets a little fuzzy here*), but we both declined.  He then dropped us off and we spent the night sharing the apartment futon, where I don’t think I got much sleep between the room spinning, and my low-level anger and resentment stewing in my mind.

~~~~~~~~~~~~~~~~~~~~~~

In the summer after my first year of university I needed a place to live.  My father invited me to stay at his house in Toronto.  There wasn’t technically space for me (It was a two-bedroom), but since my dad was sleeping on the couch, my toddler sister shared the bed with her mother and I slept in my sister’s bed on the floor in her room.  This was intended to be a temporary stop-over to my living for the summer at his apartment (which I still wasn’t supposed to mention to my step-mother).  But my dad kept putting me off.  For one reason or another, I couldn’t move to the apartment yet, until he sorted some things out.

In the meantime, I was looking for temporary work.  After a short stint in telemarketing (ugh) I found a fairly well-paid (but gruelling) job at a meat-packing plant, but they wanted me to start on Monday.  Something I couldn’t do without a pair of steel-toed rubber boots.  They weren’t expensive (about $25) but I was strapped for cash.

In my wallet, I carried with me an American Express card that my father had given me for birthdays and emergencies.  For birthdays he would tell me how much I could charge and I’d shop for myself.  For emergencies… well, there hadn’t been any emergencies.  Except this.  This felt like an emergency.  I needed the job and it was a small amount.  I knew I’d be able to pay it back to him.

I tried to contact him, but he didn’t answer.

So I charged the card.

When I finally got through to my father he exploded.  His American Express account was in arrears.  He wasn’t supposed to be using it.   We screamed back and forth at each other over the phone.  I knew I shouldn’t have charged the card, but any feelings of remorse in that moment were superseded by a sense of fury at my father for overreacting and not being straight with me in the first place.  He was in dire straits financially, but he had pretended to me and everyone that everything was fine.  He just kept screaming and blaming me for the situation as if my $25 credit card charge was solely responsible for his world falling apart.

I told him to go fuck himself and hung up the phone.

We didn’t speak for a long while after that.  He declared bankruptcy and had to sell everything.

Needless to say, I didn’t get the apartment.

/rk

*I’m not trying to obfuscate here:  Under moments of great stress, I sometimes retreat into my head as a safety mechanism.  Because of this it’s sometimes easier to remember feelings and thoughts rather than tangible memories of actual events.