It’s the same, that’s what. Better on the days when there is
sun. But today was a fail in that the med that doesn’t mess me up (hydrocodone)
was completely ineffective, so I had to resort to the wreck-me med (tizanidine,
a muscle relaxer) and I ended up in a deep, sad, garden-and-woods-avoidant sleep for most of the afternoon.
Next week I get my spinal cord stimulator trial put in.
YUCK!!! The last time I went to my spine doctor, everyone jumped all over me with enthusiasm about this procedure they think will be "a real game changer!". Last year, I'd investigated an occipital nerve stim for the back of my head only to find my
insurance doesn’t cover it. The spinal cord stim would run wires up the epidural column of my
spine, settling the leads in the upper neck across the nerves that send pain to my head. I’d have a remote control, and the
idea is when I'd start to feel pain, I would “cancel” it with an electrical jolt. A nerve can't transmit both pain and electricity at the same time, apparently. This could be awesome. Or it could cause a bunch of problems. The good thing is
that there IS a trial first, which I’ll have for about five days (no showers;
thank you, dry shampoo) to see if I get at least 50% pain reduction.
Otherwise, I’m still taking narcotics. Right now I take
long-acting hydrocodone, called Hysingla (which doctors seem to prefer), along with the short
acting version I’ve always taken. The Hysingla is basically useless. I take
just as much short-acting hydrocodone as I did before. And it’s less and less effective,
which means, truthfully, that I need stronger meds.
If you’ve been paying attention to the news, narcotics are having
a tough time right now. In response to the opiate overdose epidemic across the country,
the CDC has issued new physician guidelines that make it much more difficult
for chronic pain patients to get proper pain management. To me, they are draconian, even cruel.
Out of the 29,000 opiate deaths last year, it’s not clear
how many were from heroin and how many were from prescription drugs “An overwhelming majority of such deaths — more than nine out
of 10, according to data from New York City — involve mixtures of opioids with
other drugs rather than straightforward overdoses” (NY Post). Yet the popular belief is that most victims
were legitimate patients, prescribed narcotics for an injury/surgery, and then went
head and got hooked. Damn those doctors. Actually, this is a fallacy. Most pain
patients do NOT become hooked on their meds (it’s estimated that of chronic
pain patients treated with narcotics, only 3% will get addicted. For people
with no history of drug abuse, only 1% will get addicted). And most people overdosing
on narcotics did not get them with their own prescription; they either take someone else's pills or buy them on the street. Yet the CDC feels it needs to
drastically limit access for people with chronic pain who use their medication responsibly.
I am furious. Actually, I have great doctors and an extensive history of failed
treatments that mean I will probably never be denied pain medication. But so many others
will be. Some days I feel like writing a zillion articles as an activist,
making this my cause. But I just get so angry at the stereotyping, Anderson
Cooper shaking his head as he interviews addicts and addiction specialists. Pain
patients are not included in this conversation. I myself was interviewed by the
Philadelphia Inquirer a few days after the CDC guidelines were released. Read how my concerns were dismissed. I’m sorry people are dying. I’m
sorry Oxycontin was initially advertised as safe and way over prescribed, and then hit the streets like a tornado. But frankly, that has nothing to do
with me, or the millions of chronic pain patients who use our medication
responsibly.
Here’s the thing: I’ve been sober for 24 years. I’ve taken
narcotics pretty much daily for two years. I’ve never felt euphoric or had any
desire to abuse them. A successful day for me is a day where I don’t need pain medication (but those days are rare). Certainly I’ve known people with long-term
sobriety who relapsed on pain meds. But they are the exception, not the
rule. We just never hear about them. Am I just lucky? Or do I not in any sense
want to get high? Or are opiates just not my jam? Probably a combination.
Of course I don’t want to take them forever. While for me they
have the least side effects of any of the twenty-odd meds I’ve tried in the
last four and a half years, they are not what I want for my life.
I don’t worry about overdosing. While Prince’s death was a
punch in the stomach (and my own imagined narrative was that his pain was uncontrollable
and he was taking more and more Percocet and getting no effect), I can’t stand
the over-opiated feeling. I get nauseous, dizzy, and very irritable. In general, I worry
about what this is doing to my body long-term. Opiates inhibit the body’s natural
ability to process pain (basically decreasing dopamine receptors). Additionally, long term use can lead to
depression. Finally, opiates lose effectiveness (as hydrocodone has for me), and
patients “graduate” to stronger and stronger meds.
So I am always, always trying new thing. This week, it was
trigger point injections, needles into the knotted muscles in my neck that
compress the nerves that cause me so much distress. I was so jazzed about this
treatment that I almost called off the stimulator trial. When my doctor first
suggested the stimulator, I was all kinds of cheerful and funny about it—people
thought I looked like the Bionic Woman when I was a kid; now I’d actually BE a
bionic woman. But as the date for the trial implant draws closer I find the
whole thing much less humorous. This is my spinal column, for god’s sake. If
the trial works and I get the permanent implant, there is major scarring,
particularly where the battery would be implanted in my hip. There are all
sorts of things that can go wrong. But honestly, the biggest inhibition I have toward
this procedure are the physical limitations for weeks to months afterwards: no
swimming, no yoga, no bending or twisting (which means no camping)—basically,
bye, bye summer. So I was psyched to get the trigger point injections and
perhaps avoid all of that.
But the trigger point injections only lasted 36 hours. So I didn’t
cancel the trial. I’ll go ahead and get the temporary implant next Friday, try
it for a week, and if it works, I will think about when to get the permanent.
Summer makes me so damned happy, especially these last few days of sunshine,
which I spent in my garden, arms scraped bloody from pulling vines and muscles
sore from stapling up a deer fence to keep mister enormous groundhog from
devouring my Swiss chard. The previous weeks and weeks of rain were hell for
anyone with arthritis/join pain etc. Hydrocodone was not helping much. I spent far too many
hours in a tizanidine coma. Wish me luck next week—I’ll be awake for the
implantation, though “mildly sedated.”
So what else is down the pike? I have a consult with another
neurosurgeon next week about possible nerve decompression surgery. Then I’m getting
blood work to find out whether I have any nutritional deficiencies that might
inhibit the way my body perceives pain. I’m a well-fed vegan, but I don’t take
supplements or pay particular attention to vitamin b-12 or amino acids. I'm starting a new type of cognitive behavioral therapy that should help me develop new ways to think about pain.
And in about eighteen months, Pennsylvania’s medical marijuana
apparatus will be in place. While I have no issue with medical use of pot in
terms of my sobriety (i.e. I would not consider it a relapse), the truth is, I hate HATE being stoned. Always have. I
get anxious and unhappy. But I’ve read a lot about CBD oil and its applications
for pain, and how some strains are low in THC. I’ll definitely be in line when the dispensaries open.
In the meantime, I’m teaching a double class all summer,
basically great people with the exception of at least one potential problem
customer. I’m determined that the class will be enjoyable and relaxed (although
still an ass-kicker). The sketchy student added the class late, and I was
crossing my fingers that he might not get in, but he did. He is VERY high
maintenance, doesn’t follow direction, offers comments that go
wildly off topic, glares at me if I gently correct his work, and stays after
every single day tell me how serious he is about college. Luckily I usually quickly figure out how to handle students like this, keep him from hi-jacking the class and zapping all my energy, while still benefiting from the class.
My garden is growing, the pool club is waiting, new short stories
are brewing, and my tent beckons. I spent too much time on the couch last
summer, and I’m not doing that again, no matter what it takes.
