Painful painkiller politics: the double standards of addiction

February 23, 2012

This week’s Chronic Babe carnival is about how prescription painkillers are handled in this country.  The article The War Over Prescription Painkillers got a huge response; many people feel strongly about this issue.  I am one of them.

The pain started when I was 12.  It was sporadic and manageable.  It changed when I was 16.  It became constant and severe.  On a good day, the pain was at a 6 or 7 on the now-familiar pain scale.  If only there had been more good days.  The pain was 24/7.  I learned to eat through it, sleep through it, go to school through it, be a teenager through it.  I did not learn how to properly manage it.  No doctors sent me to a pain clinic.  There was some vague talk about painkillers, but I was scared, and no one properly explained them.  No one offered coping mechanisms.  That was back in the 1990s.  I would have expected things to have improved by now.  I wish I’d been right.

I wrote before about my feelings about medical marijuana.  I think people (meaning politicians) need to get over the stigma of it, and accept that if it can help people while imparting relatively few side effects, then it should be prescribed like any other substance that helps people.  It all comes down to the stigma.  And that’s what’s happening with the current state of painkiller prescriptions.  There’s a stigma, and that’s stopping people from getting the medications they need.

The question is simple, really: is it worth risking the well-being of the many people who could become addicted to painkillers if it means helping those who are in pain?  Well, let’s examine a few similar situations.

  1. Plenty of people like to gamble.  I’m one of them.  From time to time, I’ll buy a lottery ticket.  Sure, I know I’m probably throwing my money away, but it’s fun to dream about what I’d do with the winnings.  Some people get addicted to gambling.  This can harm those who are addicted as well as their loved ones and society in general.  Far from making it illegal, more states are making it legal now, including my own state of Massachusetts.  And it doesn’t help people with serious illnesses.
  2. Many people like to drink.  Some people go out for a drink or two, then safely go home.  Some people are addicted to alcohol.  Many people are killed by drunk drivers.  The people who drink are harmed, and so are their loved ones, strangers, and society.  Is alcohol illegal?  Well, Prohibition really didn’t work out too well in this country, and even that wasn’t a full-out ban.  These days, drinking is embraced.  Social events often involve alcohol.  Religious events often involve alcohol.  Work events often involve alcohol.  And it doesn’t help people with serious illnesses.
  3. A lot of people like to smoke.  Some smoke a lot, some smoke rarely.  Some people are addicted to cigarettes.  Smoking can kill the smokers and also the people who are exposed to their smoke.  Smoking can even detract from some workers’ productivity (add up all those cigarette breaks, and the smokers at my office spend a lot more time away from their desks than I do.)  And so now smoking is illegal.  Oh, wait, it’s not?  Really?  Hmm….  And it doesn’t help people with serious illnesses.

I could easily go on.  The point is, we do not ban items or practices because they may be abused by a minority.  if the item or activity is deemed safe overall, we allow it.  [Note: Cigarettes don’t fit this category – if they were a new invention, free of lobbying, I doubt they’d get past the FDA, but that’s just my own guess.]  So why are prescription painkillers so stigmatized?  Why are they less socially acceptable than gambling, drinking, and smoking?  I think it’s precisely because gambling, drinking, and smoking are for everyone (who  is of a certain age) whereas prescription painkillers are only for “sick people.”  The majority want to believe they will never be in need of these medications, so it is easy enough to say that their primary purpose is for use by addicts and sellers.  These people don’t want to see the real need; it’s easier to turn away from it.  But that doesn’t change it.  The need is real, and it’s here.  There are a lot of potentially dangerous substances in this world and we can’t remove them all.  Let’s not allow fear to take away something that is so beneficial to so many.

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Gluten-free day 1: The merry-go-round

February 20, 2012

Drugs, physical therapy, hypnosis, more drugs, diet, tai chi, acupuncture, meditation, psychotherapy, herbal medicine, yet more drugs…. I’ve tried a lot of different “treatments” over the years, and so far some have helped a bit, but none has eliminated any of my symptoms.  At best, a couple have lessened the pain, but that’s about it.

Now I’m looking at what could be the holy grail of treatments: a gluten-free diet.  According to books, web sites, doctors, and the nutritionist I met with last week, this could be the key.  Of course, the logical, weary, tired part of me knows that this could be just one more false lead.  Still, I’d like to hold out a little hope.

If the books and experts and such are right, then gluten can triggers an autoimmune response in the body, and eliminating gluten and relieve that response and therefore the symptoms.  In six months I could have less pain, less fatigue, less nausea…. it’s almost too much to hope for!

I’m realistic.  I don’t expected to be “cured” or anything close to it.  But if I could get a little energy back, that would be the best thing I could imagine right now.  So I figure it’s worth a shot.  Even if this doesn’t work, it probably won’t hurt me.  I just had two days of worse-than-usual nausea from adjusting a medication dose.  Sure, going gluten-free is inconvenient, but if it works, I’ll gladly do it for the rest of my life.

So today was day 1 of being gluten-free.  It was what could literally be the first day of the rest of my new life.  I sure hope it is.

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Time to stop editing my health

February 14, 2012

“Can you come to brunch on Sunday?”  Gee, why does that suddenly seem like such a complicated question?

I was invited to a potluck brunch for this weekend, and as I was giving my answer, it occurred to me just how many different answers I constantly give to that same kind of invitation, depending on who’s inviting me and how I feel at the time.  Right now I’m starting to flare (well, a flare within a flare) and that makes this weekend especially unpredictable (or maybe just predictable in a way I’m refusing to believe at the moment.)  There’s always the question of how much to share, and what do I really want this person to know?  And then I realized the most important point of all.  But I’ll get to that.

Invitation: I want to be there, but I know I might not be able to make it.  What to say?  I need an excuse, in case I don’t show up.

Close friend: I’m starting to have some bad pain in my foot, so I don’t know if I can make it, but I’ll be there if I can.  I’ll let you know, but it might be at the last minute.

Everyone else (these answers hint at the truth for less-close friends, and are totally uninformative for acquaintances): I may have to [insert weak excuse here], but I’ll try my best to be there.

Preparing: I don’t know if I can go, but even if I can, it might be tough.

Close friend: The pain is worse.  If I make it, I won’t be able to bring anything for the potluck.  Cooking isn’t happening now, and I wouldn’t be able to walk through a store to pick something up.

Everyone else: Um, by the way, is there parking at your place?  Yes, I’d normally walk, but I, um, have to be someplace afterwards and I’ll need my car.  Oh, and what floor do you live on?  Is there an elevator?  Oh, just wondering.  I, um, have a bad knee.

Day of: If I can make it, then all’s good, and if anyone comments on my limp or other visible symptoms, I’ll just make something up.  But if I can’t make it…..

Close friend: Damn this fucking pain!  Hopefully I can make it next time.  I hope you have a great party – let me know how it goes!

Everyone else: [Short email] I couldn’t get out of that other thing [mention previous weak excuse].  I won’t be able to make it, but thanks anyway.  Hopefully I’ll be there next time!

How do you handle this kind of thing?  I do this because it’s the best I can think of, but what I wonder what other people do and if there’s a better option.  I hate hate hate editing myself.  In all other parts of my life I just say what’s on my mind and it’s so much easier.

And then the most obvious point came up and whacked me on the head: Why do I do this?  Why do I make up different stories for different people?  Why not tell everyone the truth?  Obviously I wouldn’t tell a stranger the whole truth – that’s way too complicated.  But why not just say that I have pain sometimes, and right now it’s acting up, so I can’t predict if I’ll be able to make it to the brunch on Sunday.  Sure, they may have a lot of follow-up questions, but if I’m not in the mood to deal with it, I can always brush them off.  I can say that I can’t talk about it now, but I’d love to set aside a time to go over it with them later.  Why not?  

I think that I may just have to try this from now on.  It may not be easy, but balancing out the different lies and half-truths isn’t so easy either.  Besides, I’m generally a very honest person.  People think I’m honest to a fault.  The one thing I lie about is my health, and that’s just stupid.  I don’t have the physical, mental, or emotional strength to deal with that kind of crap, so why am I wasting my precious energy on it?  So for the next few months I’ll try telling the truth to everyone.  I can’t wait to see how that goes.  And it’ll have a fantastic added bonus: I won’t have to worry anymore about when and how to broach the topic – everyone will already know!

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The best kind of pain

February 7, 2012

***Warning: I get a bit sappy when I talk about my friends’ kids.  But hey, that’s an auntie’s prerogative, right?

When I was a kid, every winter my family would go cross country skiing once or twice.  We built snowmen and went sledding throughout the long New England winter, but because we went skiing so rarely, it was a real treat.

Every trip was different, but they all had the same excitement: the drive out there, getting fitted for skis and poles and boots, relearning everything we’d forgotten since the last time, breaking in the middle for hot chocolate, falling over in the snow.  It was a magical time.

Until the next morning.

Going only once or twice each winter meant that my skiing muscles never got built up.  Every morning after a ski trip, I’d wake up sore as hell, and all day long it would only get worse.  The first time it happened, I thought something was wrong with me.  After that, I knew what it was, but it was still a tough couple of days.

The other day I woke up with that same feeling.  It was glorious.

A close friend had a baby recently and I drove across the state to visit them.  Before this I knew that the Plaquenil I started last summer
was working, but only because I could climb up more stairs before my knees gave out.  This day really proved it.  First, I held the baby.  A lot.  Much longer than I could with her first two kids.  There’s nothing like holding a sleeping newborn; they’re so incredibly peaceful.  My wrists and hands were sore afterwards, but I could tell the pain wouldn’t last long (thankfully I was right about that.)  Then I was playing with the older kids on the floor, and before I knew it, they were both climbing on my back at the same time!  I never thought I’d be able to do something like that!  It was fantastic.  I’ve always enjoyed being fun auntie Rants, but it was in a calmer way – coloring and building blocks and shaping clay and reading.  This was the first time in their lives that we’d been able to roughhouse together.  Did I mention it was fantastic?  Sure, I said no to them when one wanted to sit on my back and have me crawl around; I know my limits.  But having them climb on me while I wiggled around on the floor (on purpose – they loved it) was really…. am I overusing “fantastic” yet?  And what amazed me was that I really didn’t feel any pain.

Until the next morning.

Actually, though, I wasn’t really in pain the next morning, just sore.  Very sore.  Muscles hurt that I didn’t know I had.  After all, I had barely used them in many years, so I really couldn’t blame them for acting out at me.  It was a rough day, and the next day was even worse.  And I loved it!  I’d do it again in an instant.  Playing with the kids was a dream come true, but the soreness was good too.  Have you ever gone to the gym, done some great new exercise, then ached the next day?  You know how good it feels to know you’re building up your muscles?  That’s what this was!  Only I never thought I’d ever be able to work these muscles again.  I thought that for the rest of my life, they’d remain barely used.

Ok, this isn’t perfect.  My energy still sucks and I felt exhausted for days after that trip.  But this shows there’s hope.  For more than nine years, I was in pain all the time.  I mean all the time.  24/7.  It got to the point where I couldn’t remember what it felt like to not be in pain.  Now I have pain every day, but only for parts of the day, and to me, that’s magical.  It gives me hope that my energy could rebound too.

And yes, I’m realistic.  One day the pain will get worse in all the places where it’s now a bit better.  That could be in a year, or 10 years, or 50 years (longevity runs in my family, even with the autoimmune crap), but I’m sure it’ll return.  For now, I’m just living it up.  And for me, that means getting on the floor and letting adorable kids climb all over me.  And if I’m sore the next day, remembering their laughter makes it all worth it.  It’s the best pain I’ve ever felt.

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