Self Control

On Monday I had the early mission of driving around to figure out what good flower shops I could find that were open before 9AM to get some birthday flowers, and today I left early because Nefarious wanted to get to school as soon as the doors opened, because the first kids to get there get to play chess before class starts. I’ve been waking up early to the sound of quite abrasive beeping from the device below, which I’ll digress a little to explain.

When doctors ask you to rate your pain, you get to respond with a 0-10 ranking, often along with smiley-face pictures, “0″ being “none” and “10″ being “worst possible pain”. I’ve mentioned before that one of the great cruelties of the pain treatment industry is that the doctors are instructed to try and get their patients to a response of “5″, not zero. What kind of person out there can deal with constant moderate pain? Even dealing with constant mild pain can be debilitating — a la a water drop wearing down the Grand Canyon. Knowing that you are in moderate pain, and that you will be in moderate pain tomorrow, and the day after, and the day after that for the rest of your life, can drive you mad. And knowing that the only reason you’re not getting full medication is because the government is worried that you might sell your desperately needed medication on the black market to folks who want to shoot it rather than temporarily lift their head up out of the fire, drives you even madder.

I’m sure it’s frustrating for the doctors as well, because the government audits them aggressively, and doctors can — and do — lose their ability to prescribe narcotics not just for making the mistake of prescribing to a con artist, but if they, say, aim for reducing people to “mild pain” via these simple and relatively side effect-free medications (in comparison to Lyrica and other non-narcotic pain killers). A friend was telling me that their own doctor’s entire clinic lost their ability to prescribe any opiates, so they can’t even prescribe T3′s for an injury! It’s crazy… and like I said, just really really cruel. That puts into context why I’ve had doctors tell me to buy street drugs I suppose, and really, you know something is seriously wrong with the system when doctors are so afraid of government harassment that they surreptitiously send their patients into the hands of drug deals — not that Big Pharma isn’t the biggest drug dealer of all.

Anyway, being underprescribed is difficult, because it means that every day you’re in more pain than you can deal with, so you’re left with the choice of taking some of tomorrow’s pills — a condition that snowballs and leaves you in a couple days of hell as your prescription renews — or being in pain (assuming you don’t take the dubious advice mentioned above). And when you’re in pain, and have been for a long time, you’re not thinking straight and you’re desperate to find a solution, and if you have tomorrow’s pills accessible, you’ll see them with tonight in mind, not tomorrow… I’ve struggled with this a great deal, and a secondary problem to running out before you renew is that doctors see taking your pills too quickly as a sign that you might be getting addicted, not that you’re undermedicated (which I would have thought was obvious).

To try and solve this issue I just picked up a convenient electronic locking pill container. It has 28 containers for pills that you can program however you’d like — I have it set up as two per day, so it’s got two weeks per refill for me, but you can do literally anything. For me, in the morning it serves as a wake-up alarm, beeping before it allows access to the next set of pills — and the beeping means that in addition to controlling access, it acts as a reminder (because I tend to be forgetful about parts of my prescription. The whole thing locks with a key, so these keys need to be left with a friend or, perhaps better yet, with the pharmacist (which is a little embarrassing because you have to admit to them that you need help, but that’s what they’re there for). It’s battery powered, with a small home base that it sits on during the day, perhaps to recharge. I have the basic version so the base does nothing, but you can get versions that are internet connected and send a report (I assume this feature is more for checking that old people have taken their medication). Nice feature set, and compact and portable as well.

Anyway, I got it to help me keep my medication on a regular schedule, because as much as it’s horrible — really horrible — to be undermedicated and know that every night you’re going to be in pain, it’s even worse to spend a few days with nothing at all.

pillbox

15 Comments

  1. chris wrote:

    I fully know where you are coming from. I have SMD and it has caused my back to degenerate to something that resembles a Jenga game. Along with the joint and muscle pain. I haven’t been pain free in 5 years. My pain clinic says if my pain level is between 3 and six I’m doing good. I have the same tormenting choice each day. Do I take an extra pill or two and go through a few days of hell or do I take them as prescribed and try and deal with the constant burning, throbbing and mind numbing pain? I usually send my pills with my wife because, like you said it’s to great a temptation. People who don’t live each minute of their life will never fully understand what it’s like and how much of a mental strain it is every day. I have never seen one of those machines but am going to look them up right now.

    Thursday, May 13, 2010 at 9:36 am | Permalink
  2. MissJanet wrote:

    Shannon and Chris,
    that sounds so awful. I once had back/shoulder pain due to a dislocated disk. I was in constant moderate pain for 4 months before the 3rd doctor found the reason and corrected it in seconds. Not that my body realized that the pain was gone for another 48 hours, I had become simply used to it. During the 4 months I turned into a depressive mess, it was like you say Shannon, that level of pain for an hour would have been no problem, but all the time without a foreseable ending was unbearable. I needed weeks to recover from that on an emotional level.

    You have my deepest sympathy and respect for going on and on in the way you do it.

    Thursday, May 13, 2010 at 10:27 am | Permalink
  3. JonnyButts wrote:

    Would pot not be an option for the pain and possibly help along with the opiates?

    Thursday, May 13, 2010 at 3:45 pm | Permalink
  4. Pademelon wrote:

    It’s awful that, even with all the documentation, you can’t get properly medicated. I could understand if they would medicate you as you need it but not do refillable or long-lasting scrips. For instance, requiring you to go in every 2 weeks for a new scrip so you could be monitored for drug abuse. It’d be annoying but at least you wouldn’t have to play the trade-off game, choosing between being in constant pain now or being in constant pain when your meds run out. You just can’t win with that. It’s a really good way to turn a genuine patient into someone who buys black market drugs, which is supposedly what they’re trying to prevent. Anyway, you posting that pain chart reminded me of this revision I saw a while ago. It’s slightly more accurate!

    http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html

    Thursday, May 13, 2010 at 4:36 pm | Permalink
  5. Shannon wrote:

    Jonny, pot is an option, but if I were to take it, it would have to be night time only because I don’t like the mental effects and find the side effects a little debilitating.

    Thursday, May 13, 2010 at 6:20 pm | Permalink
  6. Zandelion wrote:

    The obvious problem here is that there is currently no way to directly communicate phenomenal experience to a third person, hence the doctor’s likely disbelief that you really need additional medication (and I presume, their recommendation of the dispensing device. I wouldn’t be surprised if they told you that you had ‘an addictive personality’). It is something I think about a lot, as phenomenal content is one of the areas of philosophy I study. Pain is the defacto example case, whether it be Wittgenstein or more contemporary philosophers of mind.

    Thursday, May 13, 2010 at 8:44 pm | Permalink
  7. Cid wrote:

    I was diagnoised with Fibromyalgia 3 years ago. Lost my Medicaid a year and a half ago and have never been able to get pain meds for it. Even though I have a clear diagnosis, because of the way I look and where I live, every single doctor I’ve been to has denied me.

    So I’ve dealt with pain for a very long time. It’s difficult for me to understand why I get treated the way I do, and I have offered on several occasions to let these “medicaid” doctors drug test me to prove just because I look the way I do, dosn’t mean I’m a “Drug Dealer” or “Convict”.

    I’ve just accepted the pain and do a lot of meditation. I mentally accept the pain and allow my body to feel it, and then absorb it. Sometimes it works and I can get through it on a daily basis, sometimes it does not.

    Friday, May 14, 2010 at 6:06 am | Permalink
  8. Shannon wrote:

    Zandelion, I thought that at first that was the main issue. However, enough time has passed now, and I have enough test results back to show the doctor it’s all “real”, so I am quite certain that my doctor appreciates that there’s accuracy in the experiential picture that I’ve painted for them. At this point I’m 99% sure that their reluctance to prescribe an appropriate amount is due to fear of the government, not due to worries about me gaming them.

    Friday, May 14, 2010 at 12:00 pm | Permalink
  9. R. wrote:

    Have you thought of keeping a detailed daily journal of your pain and your interventions? conventional or otherwise (shows you’re actively seeking help and trying all kinds of remedies.)
    You would include how the pain affects your activities each day, starting with the physical aspect; your mobility, ADL’s etc. You would also share the impact it has on your psyche, as mentioned in a previous comment.
    I believe a reasonable, educated physician would find no reason or objection to prescribing the appropriate drugs/dosages were they presented with that sort of evidence.
    Here in the US there are pain management specialists, it obviously is an important aspect of wellness. Unfortunately, those who con the system know all the tricks. Doctors don’t trust, true pain sufferers don’t ever find relief.

    Friday, May 14, 2010 at 1:44 pm | Permalink
  10. What about “lying”? Or rather, apply your own personal translation to their pain scale. When you feel a “3″, call it a “7″. Call a “5″ a “9″, etc. If it’s all based on your description of the pain then in theory you can figure out what they need to hear to prescribe correctly.

    This of course would lead to pain-scale inflation where eventually you have to pretend to moan and writhe in agony to get even mild pain-killers.

    Any flaw in that theory? I’m certainly not speaking from experience. In fact, I’ve always been prescribed far more pain-killers than I’ve felt the need for. So I feel your pain, but only metaphorically!

    Friday, May 14, 2010 at 2:59 pm | Permalink
  11. Dave Smith wrote:

    Shannon, here is a better pain scale that CrimsonMane found:
    http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html

    Friday, May 14, 2010 at 9:47 pm | Permalink
  12. Elizabeth wrote:

    I was wondering about that, if you couldnt say your pain is pegged at 10 or higher, although higher isnt possible.

    Saturday, May 15, 2010 at 5:59 am | Permalink
  13. JonnyButts wrote:

    Shannon: I cruised back looking for references of side effects when you were using pot. Couldn’t find any posts (could be the lack of my interweb skills) Would you mind explaining what side effects you are referencing? It is very sad to see someone who is really sick go thru this b.s. to get medicated but with the long line ups at the methadone clinics and the rage in street use of opiates I can see why the gov’t is attempting to do what they are (ofcourse in the wrong way but it is the gov’t) Which also leads me to ask why put up with the pain when the drugs you need are readily availble on the street?

    Saturday, May 15, 2010 at 6:33 am | Permalink
  14. piercednpainted wrote:

    pain i live with pain 24/7 in my legs sensory neuropathy. the doc gives me a prescription of cymbalta that puts it down to about a 5 but living day in and day out at 5 is still painful. the doctors here dont believe in pain meds i use to self medicate with pot which would bring it down to a 3 but cant anymore due to hunting for a job so its back up to 5 5s suck

    Saturday, May 15, 2010 at 7:36 am | Permalink
  15. DTM wrote:

    you sure do like that shirt :)

    Saturday, May 15, 2010 at 9:43 am | Permalink
Wow Shannon, that's really annoying! What is it, 1997 on Geocities? Retroweb is NOT cool!

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