Goals Are For Losers

DeeDee newTime flies, fun or not. A week, a month, a year simply…vanishes. I graduated a year ago, and it has taken most of that year to recover enough to think about next steps. Another job search, and probably moving. Continuing efforts to improve my health. Things like that.

But then my therapist (a.k.a. Hippie Dude) started asking about long-term goals, after discussing the issue of career choices for ages and getting nowhere. So goals might help, right? I gave it a try despite my doubts and made lists of “goals” for various part of my life. At the following session, Hippie Dude told me that those weren’t goals per se. Goals focus on set outcomes, while I focused almost exclusively on processes. Out of two dozen items on the list, only four were true goals!

I hope someday that my extra-large pillbox will  be filled with only vitamins and supplements. And Adderall, because I'm realistic.

Filling my extra-large pillbox with only vitamins and supplements is an unrealistic delusion goal. Reducing prescriptions to a minimum is an ongoing process.

The rest of my Not-Goals were actually processes that will help me “live long and prosper”, which is my real goal and always has been. Hippie Dude says they belong in a Treatment/Wellness Plan – practicing mindfulness and yoga, minimizing Rx’s, getting and staying fit, knitting an Aran sweater, and hiking more long-distance trails. The only thing remotely career-related was “write a book”, which is also a process (publishing a book would be a goal).

So why must I have goals when they trigger anxious, neurotic behavior? DBT says I need goals. My therapist says I need goals. All of my professional mentors say I need goals. Goals seem to really help some people. But I’ve never been comfortable setting goals. A great blog post on ZenHabits, Achieving Without Goals, highlights what makes me so uncomfortable:

  • Goals box me in
  • I don’t know what the future will bring, so planning for fantasies goals is basically useless
  • Failing at goals makes me feel bad miserable and despondent but achieving them doesn’t necessarily usually satisfy
  • If I’m always focused on the future, I can’t live in the moment, nor be content with where and who I am

This is exactly why I find goal-setting so wrong-headed. I was a lot happier when I had no goals or ambitions beyond living a decent life. These days, practicing mindfulness helps more than anything else. Mindfulness is all about being here and now, and life is simply more enjoyable that way. The contentment that mindfulness brings is something I’ve come to cherish.

Goals don’t allow that contentment. The goal of getting my next job creates future-focused tunnel vision complete with crushing anxiety, dissatisfaction with my current job, and indecision ad nauseum. It steals my attention constantly; I obsess, fret, ruminate, and talk myself out of what I thought I wanted because others also impose their goals on me. But in reality, all my jobs have come to me, not me to them – so why do I keep worrying about it? Because it’s a goal, and I become practically possessed when I take goals. They turn me into an ambitious, anxious, twitchy wreck. They make me feel like a loser.

Left to my own devices, I rarely make specific goals. Backpacking is different: we make the goal of reaching the final trailhead when what we really care about is the journey. Signing out on the last trail register is indeed a victory, but that’s because our feet are tired — that moment is not why we go backpacking. It’s every step between the trailheads that matters. It’s a decent metaphor for life, because although I really want a hot shower when we hit the finish line, what I want even more is to keep going. That’s what a life well lived should feel like, right?

The Buddha taught that desire is the root of all suffering. I think he was right. Goals are desires, and they’re inordinately good at causing suffering – clearly more so for some of us than others. As time passes, principles become ever more important to me, while goals quickly become obsolete, over and over. Living according to principles rather than goals will never make me feel like a loser, and that sounds like good medicine to me.

© DeeDee and A Canvas Of The Minds 2013. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to DeeDee and A Canvas Of The Minds with appropriate and specific direction to the original content. This work is protected under a Creative Commons Attribution-Non-Commercial-NoDerivs 3.0 Unported License.

Writing a Safety Plan

DeeDee newWhen I started creating a Wellness Journal awhile back, I found I didn’t have some of the “required” ingredients on hand, including a Safety Plan and a Wellness Plan. Fortunately, plans can be developed as needed, right?

I started with a little research and quickly learned that there are a number of different contracts and plans meant to improve accountability and interventions in mental health crisis situations. I ended up putting together a Help Contract (which acknowledges that my husband sometimes knows better than I, and promises that I’ll accept help) and a Suicide Prevention Contract as separate free-standing commitments. They were easy to adopt almost as I found them, with very little personalization required.

“Plans are nothing; planning is everything.” Dwight D. Eisenhower

But the Safety Plan, that clearly needed some consideration and effort. The focus of a Safety Plan is on intervening in crisis situations; it lays out the plan of action for times when things get rough. That’s separate from a Wellness Plan, which sets up ongoing medical and behavioral management plans.

Plan Ahead by New York City Department of Transportation, CC BY-ND 2.0

Plan Ahead by New York City Department of Transportation, CC BY-ND 2.0

My therapist and I discussed the idea of a Safety Plan. He thought it was a good idea, and after a couple rough patches that got nasty quite quickly, I felt like it was a good idea too. I found a few templates and examples, and then sort of created my own by mashing up the most useful (for me) elements of them together. Actually writing it, however, was no easy task.

Pondering what to do if you totally flip out is something of a downer, if you know what I mean. As is thinking about exactly the behaviors that mean it’s time for someone else to start making decisions. I don’t relinquish control easily, even when I’m not in any condition to make rational decisions, but writing my own instructions means there’s a level of grudging acceptance because I wrote them this way for a reason.

It wasn’t a quick project, either. I didn’t try to avoid the discomfort by completing it as quickly as possible, but instead let it stew a little – making sure that I was doing it thoroughly, thoughtfully, and honestly. After about two months of slow processing and a little effort here and there, the final document includes contact information for all of my regular medical care team (plus my husband, of course) and facility preferences, as well as indicators of symptoms and appropriate interventions.

Reviewing the plan makes it glaringly obvious to me that depression is a much bigger problem than mania. But even more apparent is how much I depend on my husband to help me through rough times. If I really went off my rocker, he’s the one who would have to call my supervisors and let them know I need extended sick leave. If I’m not sleeping and am getting way too wound up, he’s the one who is supposed to remind me that I shouldn’t be drinking, not even a little bit. Providing this kind of support is a nontrivial thing to ask someone to do. I’m a lucky girl to have such a supportive partner!

I emailed the final draft of my Safety Plan to my therapist. He said it looks good, covers a number of different situations, and hopefully we’ll never have to use it. Well, actually, I did use it already, so I guess we’ll just hope I don’t have to use it again

————

Purpose

This document establishes responses to emergency situations when my decision-making capacities are compromised. It is meant to improve my accountability, and help others know when to intervene and how to help.

Care Team

Husband: Mr. Chickadee

Medication management: Nurse Nycta, NPP

PCP: New Nurse, NP

Individual therapy: Hippie Dude, LCSW-R

DBT group: Leader #1, PhD & Leader #2, LCSW-R

Preferred Facilities

Emergency: 911; Great Hospital ER

Psych ER: Psychiatric ER (walk-in 24-hour)

Inpatient psychiatric ward: Great Hospital Inpatient Psychiatry (by referral from PER, ER, MDs, etc.)

Pharmacy: Rite Aid #00000

Current Medications

My current medications and supplements are kept in my top left desk drawer and the left bottom shelf of my desk organizer. Spare/discontinued meds are kept in the psychedelic box in the linen cupboard.

My current medications & dosages are listed in the front of the red binder stored in the bin to the right of my desk. They are also available from MedicAlert (800-625-3780; member ID ########).

My Rx history since late 2008 is in the blue binder to the right of my desk, and in ~/Dropbox/Health/RxRecords.xlsx. My labs, gene testing results, and other patient records are also in the blue binder.

I have no known drug allergies, but have sensitivities to epinephrine and codeine. Should hospitalization be required, intake needs to receive a copy of my medication sensitivity testing results (CYP2D6 ultrarapid metabolizer, CYP2C9 poor metabolizer).

Baseline Wellness

  • Alert and functional within 30 minutes of waking
  • Sleeping approximately 7 – 8 hours/night
  • Normal level of engagement in work and leisure activities
  • Generally optimistic and rational
  • Good sense of humor, laughs and smiles easily

Depression Symptoms

  • Disrupted sleep patterns, always tired
  • Very slow to wake, never fully alert
  • Cognitive & physical slowing, reduced verbal skills
  • Sharp decline in productivity
  • Significant increase in anxiety, pessimism
  • Loss of interest, hopelessness
  • Crying – persistent, uncontrollable
  • Clingy, seeking reassurance
  • Nonfunctional/non-responsive/semi-catatonic

Interventions for Depression

  • Crying for 2+ days:
    • Take the day off
    • Call/email Hippie Dude for appt
  • Severe symptoms for 5+ days
    • Take 2-3 days off
    • Call/email Hippie Dude for appt
    • Call Nurse Nycta for emergency appt
  • Self-injury ideation
    • Tell Mr. Chickadee
    • Call/email Hippie Dude for appt
    • Tell Nurse Nycta at next appt
  • Self-injury
    • Tell Mr. Chickadee immediately
    • Dr. or Mr. Chickadee calls Hippie Dude on cell for emergency appt
    • Dr. or Mr. Chickadee calls Nurse Nycta for emergency appt
    • Evaluate taking leave or checking into Good Hospital
    • Mr. Chickadee removes knives, razors, & extra meds
  • Suicidal ideation
    • Tell Mr. Chickadee
    • Dr. or Mr. Chickadee calls Hippie Dude & Nurse Nycta for emergency appt
    • Evaluate taking leave or checking into Good Hospital
    • Mr. Chickadee removes knives, razors, & extra meds
  • Actively suicidal (have a plan)
    • Tell Mr. Chickadee and/or Hippie Dude immediately
    • Admission to Psych ER
    • Mr. Chickadee notifies Hippie Dude & Nurse Nycta of admission
    • Mr. Chickadee informs supervisors that I need sick leave
  • Suicide attempt
    • 911 or ER
    • Mr. Chickadee notifies Hippie Dude & Nurse Nycta of admission
    • Mr. Chickadee informs supervisors that I need sick leave

Self-injury history of cutting and burning; prior suicide attempts by cutting.

Mania Symptoms

  • Sleeping less than 5 hours/night for 2+ consecutive nights
  • Starting or agreeing to many new projects
  • Excessive, impulsive spending
  • Unusually talkative, sociable, physically active
  • Irritability, ranting, aggressive driving
  • Failure to record mood scores 3+ consecutive days (while on the grid)
  • Significant increase in alcohol consumption (3+ servings, 2+ nights)

Interventions for Mania

  • Under 5 hours sleep/night for 2+ consecutive days
    • Tell Mr. Chickadee
    • Stick to sleep schedule; use melatonin
    • Take breaks from overstimulating situations
    • Take Ativan before social events
    • Limit caffeine to 2 servings in AM
    • Limit alcohol to 2 servings (if no Ativan taken)
    • Stay offline as much as possible; save emails and blog posts as drafts
    • Avoid new projects, commitments, purchases
  • Under 3 hours sleep/night for 5+ consecutive days
    • Skip ADD meds
    • Take Ativan, not alcohol – no alcohol at all
    • Call Nurse Nycta for emergency appt
    • Call Hippie Dude for next available appt
    • Mr. Chickadee verifies adherence to interventions above

In an Emergency

If I am unable to conduct my own affairs, Mr. Chickadee has power of attorney and is authorized to make all decisions on my behalf; he knows my preferences. Under no circumstances is ECT permitted.

© DeeDee and A Canvas Of The Minds 2013. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to DeeDee and A Canvas Of The Minds with appropriate and specific direction to the original content. This work is protected under a Creative Commons Attribution-Non-Commercial-NoDerivs 3.0 Unported License.

When Do I Make the Call?

DeeDee newEveryone tells me I hold out too long. I don’t ask for help often enough or soon enough. I tell them that I don’t know when to ask; they don’t seem to understand.

I’m learning to recognize when things are going awry and when what I’m feeling should be considered “unacceptable” because it’s suffering, not pain. I’ve accepted, at least at an intellectual level, that everyone needs help sometimes, including me. That’s been no easy task.

My therapist says that I’ve lived with this for long enough that I should be able to recognize triggers and mood swings coming on. The truth is that I’m just now starting to be adequately self-aware to properly observe and describe my own emotional state, and feel utterly unprepared to make judgments about how to address problems. But this is something I must learn to do.

As I worked on developing a safety plan (post to come) it became painfully obvious that I really don’t know when to intervene. I know what the worsening progression of symptoms looks like, but somehow can’t figure out when I really need to reach out for help. As my therapist has told me several times, I have to own up and let others know when I’m not doing well. I’m willing to try to do that – even aching to at times – but I don’t know when to make that call.

Chickadees don't make very good cartoonists.

Chickadees don’t make very good cartoonists, by the way.

I’ve been told by all my doctors, and even a few friends, that I should call if I need anything – but I don’t. I always rationalize it by saying that the current crisis won’t last and by the time I could get in to see someone, it would be over. My therapist reiterates that I should call as soon as I recognize that things are going off and that early intervention is important. He gave me his cell number and personal email address, so I guess he means it.

But most often, the crisis state trigger is hormonal and I just have to wait it out, even though I can’t really function in the meantime. No one can do anything about hormonally-induced mood swings that I haven’t yet been able to get the medical services to address. So my thinking is, why call and waste everyone’s time? Neither they nor I can actually resolve the problem, so sounding the alarm just makes more of the issue than need be – and that is certainly a self-invalidating thought process.

Today (as of writing this, anyway) marks the third day I’ve been crying; it’s been getting worse and not better. According to my safety plan, I should take the day off and call or email my therapist for an appointment. But we already have an appointment for Tuesday, and I can’t take the day off – I have an important conference call in a few hours. I don’t know how to reconcile the ideal with the reality because I have always been my second priority.

And even as I wrote this, an offer of help that would let me take the day off arrived. Now the question is, can I set aside my pride long enough to accept the help that I know I need?

I told my boss I was ill, took the day off, and emailed my therapist. As agreed.

Addendum: Since I was still crying three days later, I made an emergency appointment with the psychiatric nurse, and I’m trying a new add-on antidepressant. I also added a therapy appointment next week. Everything will be OK, eventually.

© DeeDee and A Canvas Of The Minds 2013. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to DeeDee and A Canvas Of The Minds with appropriate and specific direction to the original content. This work is protected under a Creative Commons Attribution-Non-Commercial-NoDerivs 3.0 Unported License.

Medication Sensitivity: It’s In Your Genes

DeeDee newIn October I had genetic testing to evaluate medication sensitivities. This sort of testing only looks at a few specific parts of your DNA, the bits known to affect the way you metabolize a lot of medications, including most psychoactive drugs. It’s usually covered by insurance when prescribed – even for MediCare, as a matter of fact. There are a number of different testing providers and test structures; I had a full panel test against several classes of drugs.

I had hoped to get this testing since I heard about it. I’m fed up with constantly experimenting with drugs at the cost of my stability and productivity. Anything that helps give some guidance toward what should work and what shouldn’t – and why – would help reduce the misery. So I did a cheek swab in the psych’s office and took home a shiny but otherwise relatively uninformative brochure.

The good stuff came at my next appointment, when my PNP went over the results with me. The report came with several sections: Analgesics, Psychotropics (Antidepressants, Antipsychotics,) and ADHD medications. Sadly missing are anxiolytics and mood stabilizers; maybe someday? Still, this is enough to narrow things down a lot.

Each of the drug classes gives me a table of medications in the green-yellow-red-coded categories of “use as directed,” “use with caution,” and “use with increased caution and with more frequent monitoring.” Each drug is listed with a note to tell you why it’s in that list, which is based on results from scientific research.

For example, my analgesics report included three drugs under the green light: buprenorphine, fentanyl, and morphine. Basically, if I need a painkiller, it’s gotta be really strong. Everything else (hydrocodone, methadone, oxycodone, tramadol, and codeine) are in the other categories because my CYP2D6 genotype makes me an “ultrarapid metabolizer” and my body eliminates the drugs unusually quickly. Only codeine is in the red list, and Wikipedia tells me why:

Life-threatening intoxication, including respiratory depression requiring intubation, can develop over a matter of days in patients who have multiple functional alleles of CYP2D6, resulting in ultra-rapid metabolism of opioids such as codeine into morphine.

The report also lists the expected effects of that genotype on analgesic parent drug and corresponding metabolite levels, plus a list of pharmacokinetic drug interactions that can reverse the effect. Apparently although the expected levels of the parent drugs are decreased for some analgesics, the levels of their metabolites are increased. I’m not sure what that means in the end, especially because bupropion blocks the CYP2D6 enzyme and can completely reverse the ultrarapid metabolizing effect. It’s a lot of data to try to interpret, but I have the rest of my life to make use of this information and I expect health care providers will get better at working with it in the future.

On to psychotropics: under the heading of antipsychotics, I now know which four to try first if I ever must, and which to avoid. For antidepressants, Wellbutrin shows up in the green list (I’ve been taking it for over 10 years) along with three others I’ve never tried, which means I have a few other viable options if needed. In the yellow column, the 8 antidepressants to use with caution include Zoloft, which I’ve had in my pillbox since June. The footnote on that one?

Difficult to predict response because of multiple gene variations.

The red list antidepressants includes 7 drugs, two of which I’ve taken before; one caused psychosis and the other exacerbated mania, so the advice to avoid them and their kin is well heeded. For the most part, the reason reported for the mismatch is the ultrarapid metabolizer thing – I’d need higher doses, which brings risk of greater side effects, and that’s exactly what happened with Prozac and the auditory hallucinations. To further complicate the antidepressant situation, one of my genotype variations causes increased risk of adverse drug reactions with certain SSRIs. In fact, that particular allele variant is also associated with MDD, the diagnosis I was first given at age 13. Validating, but not particularly surprising.

In the summary of my genotypes and phenotypes related to psychotropics, it turns out that I’m a poor metabolizer on CYP2C9, the opposite of being an ultrarapid metabolizer: a normal dose of some drugs can induce toxicity. Of the 6 genes examined for psychotropics (CYP2D6, CYP2C19, CPY2C9, CYP1A2, SLC6A4, HTR2A), I metabolize the medications as expected for only half of them.

To supplement that profile, there’s a huge matrix of drug interactions for another allele (CYP450) showing whether taking a pair of drugs together will increase or decrease the blood serum level of the psychotropic. How awesome is that?!? I mean seriously, if you knew that taking cocaine and bupropion together might increase the amount of bupropion in your bloodstream, it might make you think twice about that cocaine, right?

Finally, ADHD meds: there are only two expected to work as expected – methylphenidate and Focalin. The rest will likely require higher dosages, again due to the CYP2D6 gene. Since bupropion and sertraline are strong inhibitors for this gene’s enzyme, they should counteract the effect to a fairly large degree. Nonetheless, I still need higher doses of amphetamines to get the desired therapeutic response, which has already been evident in several ways.

As a result of this gene testing, I can take these results to any health provider in the future to help refine treatment choices. It’s already led to a few adjustments, with a higher dosage on my ADHD medication and reduced Zoloft. I can already see benefits from these small tweaks. For now, the adjustments to my meds cocktail are really helping, but if other changes are needed in the future, I now have more personalized information to make smarter choices about medications.

© DeeDee and A Canvas Of The Minds 2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to DeeDee and A Canvas Of The Minds with appropriate and specific direction to the original content. This work is protected under a Creative Commons Attribution-Non-Commercial-NoDerivs 3.0 Unported License.

The Real Deal Versus Generics in Psychoactive Meds

DeeDee newRecently the FDA announced that Teva’s generic version of Wellbutrin XL (budeprion) was not in fact an equivalent medication, pulling it from the market. This is sort of a landmark thing; all kinds of authorities of various sorts (doctors, pharmacists, regulators, hobos) will insist that generics and brand name medications are the “same.” They are not. They are the same in some respects, but can be meaningfully different in other respects. I’m not going to go into those details at the moment, however, because I’ll go off on a rant and I do have another point to make.

Update: Here’s a great post explaining the US regulations around generics and brand drugs. In particular, check the criteria for FDA approval; the issue with budeprion is that it is not bioequivalent. In particular, tests showed that blood levels of the medicine were very different with budeprion when the FDA finally gave in and looked into it after several years of consumer complaints. I’ll let you draw your own conclusions…

In this case, Wellbutrin has a long history of generics being reported as having more side effects and less efficacy. I was keenly interested in the story from the moment I saw it mentioned on Twitter. I’ve been taking Wellbutrin (a generic version of it, anyway) for about 12 years, and it hasn’t always been smooth going. Perhaps this might explain some of the bumps in the road?

It’s not just that one of these things is not like the others. None of them work the same, despite having the “same” active ingredient.

I never realized it, but switching between manufacturers of medications could have caused many instances of breakthrough depression and overwhelming anxiety, leading to increased dosages and increased side effects without increased benefit. In the past, I’ve taken Teva’s and Anchen’s and god knows who else’s bupropion. I never would have guessed that the sort of mood and side effect variability I experienced could have been due to something as seemingly trivial as my pharmacy switching suppliers of my generic meds. After all, the generics are all the same, right? So it was just more depressive symptoms, of course. All in my head.

With somewhat ironic timing, a couple weeks after the announcement of the FDA’s big news, my PNP gave me a month’s worth of samples of brand-name Wellbutrin XL to try. For the first time since I’ve taken bupropion – over 12 years – I’m actually taking the brand-name drug. Insurance has never permitted it because it’s $300/month (or more). The goal of trying the brand drug was reducing anxiety and combating sexual dysfunction from the SSRI (that I’m taking because bupropion wasn’t doing enough for hormonally-triggered depression).

The difference was immediately noticeable, though in unexpected ways. First, it felt almost as if I were starting the drug for the first time or increasing my dose, not continuing at the same 300mg. Except that I didn’t have any of the headaches that I always experienced (with a vengeance) when increasing dosages of bupropion.

Wellbutrin vs. Anchen Bupropion? No contest.

Second, I wake up much more readily in the morning, similar to the difference between not being on lamotrigine and taking it. When I started lamotrigine, my ability to function prior to taking my meds in the morning improved by about 1000%. Switching to Wellbutrin XL makes it another 500% better.

The reason is that it’s a true extended release medication; there’s still some in my system 22 hours after taking my last dose, unlike the generics that left me waking up on empty. And wouldn’t you know, one of the problems the FDA found with Teva’s budeprion (ergo probably others) is that it’s not really an extended release drug. That alone is justification for going with the brand name drug – it will keep me more stable, for heaven’s sake! How could that possibly be bad for someone with bipolar disorder? Exactly.

Third, it has reduced my overall anxiety levels, which had been really high lately. Anxiety is sometimes a side effect of bupropion, and it was getting to the point of spawning OCD-like symptoms and disrupting general functioning.

Fourth, my attentiveness is a little better – enough that I can notice the difference, which is meaningful because it can be very hard for me to gauge how distracted I am. This time I’m judging it by the consistent difference over a period of several weeks, which is unlikely to be a spurious correlation. Bupropion can “boost” the (dopaminergic) action of amphetamines for ADHD, and it is also used alone to treat ADHD in some people.

Finally, my libido is back! With a vengeance, in fact. The numbed nethers from sertraline seem to be at least partially offset by the Wellbutrin. It doesn’t fix the rest of the SSRI-induced sexual dysfunction, but we’re finding ways to address that. ;)

So the Real Deal Brand Name medication is working better all around. I’m now quite curious as to how Lamictal proper would compare to Teva’s lamotrigine. According to my prescriber, Wellbutrin XL and Lamictal are the two drugs she most often sees problems with generics compared to the brand drugs.

Changing to brand-name Wellbutrin XL takes the monthly drug price from around $23 to $300, which means extra complications. Among them, I have to wrestle with my insurance company to issue “prior authorization” and then a second authorization so that they will actually pay for it. It also means that the price floor for prescriptions alone to keep me functional on a daily basis will skyrocket to around $7500/year to ensure that I can continue to be a contributing member of society. It might sound like an awfully high price tag, but it’s certainly worth it to me.

© DeeDee and A Canvas Of The Minds 2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to DeeDee and A Canvas Of The Minds with appropriate and specific direction to the original content. This work is protected under a Creative Commons Attribution-Non-Commercial-NoDerivs 3.0 Unported License.