My Life on Speed—An Update

updates

Almost four months ago, I started treatment for Binge Eating Disorder.  Basically, that consisted of taking an amphetamine, journaling about the changes in my compulsive thoughts and eating, visiting my med provider (Sarah) more often, and fighting with insurance.

I’ll start with the ugly and work toward the beautiful.

Gorey1. Dealing with insurance is a nightmare of Edward Gorey proportions—decoding the telephone directory-sized formulary, shuffling piles of contradictory paperwork, making my pharmacy do what the insurance company tells me to tell them to do, stopping Sarah from following the pharmacy’s incorrect instructions, filing forms for an exception to the formulary, filing an exception to the prescribed dosage, discussing the exceptions with non-English-speaking Call Center schlubs who have no authority, resubmitting forms, getting Sarah to resubmit forms…

It took all four months to get it straightened out with me double-checking everyone else’s work.  This process would make a sane person stark raving (and has.  I’ve discussed this with lots of neuro-normal people who ended up screaming on the phone or curled up in a puddle at their pharmacies), so I had to tackle it one little piece at a time.

I’m well aware that insurance companies try to get customers to give up.  They don’t want to pay for anything.  But, I survived filing for disability.  I know this game.  And while it was stressful, and I used a lot of colorful language, I got the exact drug I needed and gained even more respect for Sarah.  She and my (new) pharmacy—these worthies—stood with me on the battle field.  Their loyalty and integrity will earn them a place in Valhalla.

Yield2. There’s a reason amphetamines are contra-indicated for people with bipolar disorder.  Luckily, Sarah and I both did our homework about how they might cause mania and insomnia.

When the zip I got from my pills crossed over into agitation, I stopped taking them.  Since I’ve never been very clear about that line (it feels so good to feel good), the symptoms got scary sometimes before I recognized them—like forgetting appointments, or tearing my apartment apart to find a photo I wanted to use, or getting completely overwhelmed by a movie, or driving too fast while texting.

Whenever I woke up to being scattered or dangerous, I stopped.  I made myself safe or quiet.  I notified Sarah.  And I waited.  The mania always receded.  This is one of the benefits of rapid cycling.  I can always count on my mood changing.  I just had to take my brain-skillet off the fire of the amphetamines to let it happen.

Double AhThose are the ugly parts of My Life on Speed.  The rest is pretty darn lovely.

3. I’ve experienced very little depression since May.  Historically, I suffer less depression and more hypomania in the summer, but not to this extent.  I checked my old journals to make sure.  I expected the Vyvanse to flick me into mania at times, but did not expect the overall shift up in mood.  Sarah and I are cautiously hopeful that this trend might continue into winter.

Oh!  I don’t want to pin any real hope on this, but what if the Vyvanse could keep my mood from sinking into that suicidal basement come February?  Since I’ll also have a caregiver for the first time in my life (from Lutheran Services of Iowa) to help motivate me to keep my apartment clean, this winter could be very different.

4. When I take the Vyvanse, all the compulsive thinking about food goes away.  Small amounts of food give me a sense of satiety.  I don’t need more.  I don’t want more.  There have even been times this summer when I forgot to eat.  I can’t express how weird that is.  I know there are people in the world who lose their appetites when stressed—I thought they came from Pluto.  I have wanted to eat while I was puking from the flu.

Brain That Wouldn't DieI’m seeing now how much space food occupied in my head.  The absence was unnerving at first—like walking into an abandoned house with just a few sticks of furniture left behind by the previous owners.  But, I’ve come to love all this room.  And I’m taking my time redecorating.

Whenever I stop the Vyvanse to let manic symptoms settle, the compulsive thoughts return.  I feel them crowd in—pushy, rude, overbearing.  But I can remember what their absence feels like, and somehow that helps keep me from bingeing as much as I used to.  And even then, I don’t punish myself anymore—for being weak, or gluttonous, or just wrong.  I have evidence now.  Binge Eating Disorder is real, not a character flaw.

5. The final sweet treat is that I’ve lost 30 pounds.

I’ll just leave it at that, because… you know…

I’m on an Adventure.

Life on Speed

CrackheadSay No to Drugs.  That’s been my mantra for the past five years.  After trying every psychotropic pharmacology had to offer, which either had no effect or made my bipolar symptoms worse, I chose to manage my illness drug-free.  I take a sleep-aide when insomnia pops up, because that can mess me up fast and hard, but that’s it.  I had to get over my dream of a Magic Pill.

A year or so ago, I also gave up the dream of losing weight.  I’d used every kind of diet and non-diet, mindfulness training and behavior modification, but compulsive eating always won in the end.  I felt it was time to shake hands with that old nemesis and accept it in the pantheon of players.  Better to accept all of me, I thought, than keep bullying the parts that didn’t behave well.

I’d never talked about my compulsive eating with the nurse practitioner at my psych clinic, but this spring I did.  It was part of my bi-annual check-in, a commentary on my relationship with myself.  But she had a different take on it.  Sarah said I was a poster child for Binge Eating Disorder, and that there was a drug that might help.

Was I leery?  Yes.  Skeptical? Of course.  One of the things I love about Sarah, though, is how conservative she is about medication.  She’s my loudest cheerleader, and our brief sessions usually consist of her grilling me on what new tools I’m using to manage drug-free.  I know to keep an open mind when Sarah makes a suggestion.  So, we talked about Vyvanse being a “clean” drug—it’s in your system or it’s not, no lingering effects, no weaning on or off it like the psychotropics.  Any side effects should present themselves right away (source: http://sideeffectsofxarelto.org/current-xarelto-lawsuits/).  We would start with the lowest dose and work our way up to find a level that would (ideally) curb the compulsion without throwing me into mania or insomnia.  I said, yes, let’s give it a try.

I tried not to have any expectations.  I turned down the volume on The Song of the Magic Pill.  I didn’t want to set myself up for another round of disappointment and failure.  Sarah encouraged me to focus on changes in the compulsive thinking and my feelings, not weight.  I created a chart for the back of my journal to keep track of those parameters.  I was ready.

Three weeks in and I’m cautiously, furtively whispering, It’s a miracle.

The first thing I noticed was the sensation of fullness.  I never felt full when I ate, not even after bingeing for hours at a time.  What allowed me to stop was a weird click in my head, like a timer that said I was done.  Feeling full was a totally alien concept, and I was astonished at the minuscule amount of food that produced the effect.

I also noticed when the Vyvanse wore off and the compulsion returned.  It was like fire ants scuttling over my brain, a swarm of nattering food-thought—What do I want? What do I need? Where? When? How much? What else?—that hadn’t been there a moment before.  It was fascinating.  And it helped me identify the compulsion more clearly.  I could see the difference between the frenzied drive and habit.

Habits are the things normal people deal with—popcorn at the movies, a snack with TV, a trip to Dairy Queen to celebrate.  I found that without the engine of compulsion pushing my habits, I could brush them aside.  I spent a couple of hours reading without eating.  I watched a movie without a snack.  Habit carries its own power, so I have to be intentional and mindful, but now mindfulness actually works.  I still overeat and make crappy choices otherwise.

With time and attention, habits can be changed.  This is my hope.  I went to Starbucks the other day and stopped before I ordered.  I thought my regular Venti latte might make my stomach uncomfortably full.  I was perfectly satisfied with the Grande I ordered instead.  I can’t adequately express how weird and wonderful that little triumph felt.  With nary a fire ant in sight.

I’m on an Adventure.

You Know It’s Bad When…

CrazyThis bipolar business has gotten to the point where the only thing my therapist can say is, “I’m sorry.”

I stretched out in the hot tub longer than usual yesterday, targeting all the sore places—the fibromyalgia that comes with the really deep depression—and a thought rose.  It’s been surfacing more frequently lately.  If there was a new drug for this, I’d take it.  That’s when I know it’s really bad.  Because I’ve tried all the drugs already.  Help isn’t coming from pharmacology.  But, I still dream of a Magic Pill.

I’ve been watching a lot of The West Wing.  Remember that show?  Martin Sheen as President?  In one episode some of the White House staff miss the motorcade and have to schlepp across Indiana on their own.  They meet a man in a bar who’s trying to make ends meet.  “Life is hard,” he tells them, not knowing who they are, “but it should be.  I don’t mind that.  I just need it to be a tiny bit easier.  Just a little bit.”

Boy, howdy, I get that.

I know living with mental illness is hard.  I don’t expect that to change.  But, if it was just the tiniest bit easier, I think I could…

I don’t know how to end that sentence.

…keep going.

There are days when I give up.  When the first whole thought that comes in the morning is “My life stinks.”  When I spend all my money on junk food and eat for hours at a time.  When the sound of a human voice hurts my skin.  When my thoughts are so ugly and poisonous that I just shut the door on thinking at all.  There are days when the only thing keeping me alive is my responsibility to my cats.  I’ve had a lot of these days lately.

I don’t want to post about this.  I don’t want to load the ether with ichor.  But it’s either that or nothing right now.

Right now.

That seems hopeful.

Zzzzz…

handmade greeting card, collage artMmmfrph.  This is my first morning after my first night on a sleeping pill in over three years.  Erg.  Still didn’t sleep through the night, but part of my brain seems to be unaware of this fact.

Speaking of drugs, my conversation with the hospital shrink was quite satisfactory.  She was the one three years ago who told me pharmacology had nothing more to offer me, which set me on my Bipolar Bad-Ass course.  I thanked her for that, which caused some wide-eyed blinking and mention of new meds I might try.  Thanks, but no.  But after two more nights of only three hours of sleep and no opportunity for a nap during the day, I agreed that a sleeping aid was in order.

Changes is one’s sleep pattern is an early warning sign of mental distress, but I wasn’t paying attention.  It’s too easy for me to just take a nap during the day if I’m tired.  I’d been doing this for so long, I forgot it wasn’t healthy.  So now I have to retrain my body and brain to the required eight consecutive hours.  It will take a little time and tolerance for the morning hangover.

Fatigue makes me irritable and intolerant.  Concentration splinters and I lose my sense of humor.  Sitting in group all day with other people jangles all those weary nerves.  I try to watch as my irritability bubbles up, take a deep breath, and wait for the froth to settle before speaking.  So far, so good.

It helps to be working with interesting material.  Tuesday we spent the day on self-esteem.  Yesterday we started on boundaries and anger management.  More on those topics today.

Here’s part of a video we watched from Jack Canfield, the author of the Chicken Soup for the Soul series. I managed to stay awake for this one.

Getting Better

handmade greeting card, collage art

I stood at my kitchen window yesterday, watching the morning come.  Prickly, my brain hot and sore, vague urges and angers surfaced in bubbles to pop, causing an instant of relief and splatter like a crime scene.  I felt the craziness in me like a wild animal, pluck-pluck-plucking at my soft tissue with one, long claw.

I watched a car go by on the street.  My mind mused:

I thought I’d be better by now.

And a Pandora’s Box opened.  Beliefs buried underground rose.  I expected my symptoms to lessen once I got off medications.  I expected my compulsions to ease as I worked on mindfulness.  I believed in a life where I’d be better.  I planned for it.  But, my symptoms are the same.  My compulsions are the same.  Mindfulness and being medication-free only help me See.  I’m never getting better.

I’m never getting better.

After a moment of self-pity, I looked back out the window.  Gray now.  The tree, the sidewalk, the patches of snow.  Another car went by.

Ah, the next thought settled on me.  That’s what all this has been about.

Revelations come in waves, for me.  They wash up over me, I get wet, then they recede.  I dry off and forget about them.  Except they leave sand in my shoes.  The next wave comes.  This one is stronger, knocks me off my feet.  But, it too, recedes, and I dry off again.  Each wave pushes me a little further up the surf line until, finally, I’ve altered my path enough to stay out of the water’s way.

The waves are coming fast now.

More and more, I’m being called to live Here and Now, to inhabit the person I am Now.  Not planning a life for someone who doesn’t exist.  It means respecting the fact that people exhaust and trigger me, accepting that food comforts and fantasy delights me.  It means embracing the changeable spectrum of my capacity, knowing that one day I can create a ritual full of symbolism and spirit for a group of 25 and the next day can only take a shower before going back to bed.  It means contemplating solitude and finding peace there.  It means respecting myself Now—the limits, the talents, the inconsistencies.  It means being willing to listen to who I am Now—what I need, what I want, what fills me up.

I don’t really know who I am Now.  I know who I was.  I know who I should be.  I know who other people expect me to be.  But, I’m willing to stand at my kitchen window until I find out.  Or until another wave nudges me in the right direction.

Withdrawal From Antipsychotics Can Cause Psychosis

This is vital information for anyone on psychotropic medication.

Manic Muses

For those who aren’t regular readers of my blog, I have been struggling to quit Abilify – a powerful antipsychotic medication – without success.  This has been a frightening, long and drawn out process for me, since the withdrawal symptoms I’ve experienced every time I have tried to quit this drug inevitably included a mild psychosis.  What is even more disconcerting is I never had any symptoms of psychosis until I started taking Abilify.

Last night I received a reply from a gentleman named Ed to one of my former posts: Abilify Withdrawal – Round 3: Abilify Wins and Antipsychotic Dependence. It is a very thoughtful piece from a person whose son had a psychotic break after trying to quit antipsychotic medication.  If you read Ed’s comment and follow the links he provided, it seems there is  now evidence  in a just published study that withdrawal from antipsychotics may lead to…

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Remembering in Dark Water

One thing I’ve learned about my particular flavor of bipolar disorder is to never take myself seriously—especially during an episode.  The musings, scrambling for Meaning, revelations, decisions and planning that go on while I’m the throes of my illness are, at best, untrustworthy, and, at worst, dangerous.  Like the other, darker thoughts that crowd in, these milder delusions are just flotsam—the foam churned up by my brain’s tidal changes.

So, I’m a little reluctant to pose anything my brain has spit out over the past few days.  These ideas always seem rational.  They feel reasonable, even helpful, but I know my judgment is faulty.  I won’t be able to see how much until the episode passes.

With that very large caveat, here’s the thought taking up space in my head.

I need to keep journaling.

During this episode, I’ve tried to do a little research for my next writing project.  Mostly, I’ve been reading my journals to get a sense of my illness before it was diagnosed.  Aside from the shock of seeing how ill I was, I was struck by my retroactive memory loss.  The months or years when I didn’t journal are gaps in my memory.  Sometimes I can conjure a vague image or touch a ghost of an emotion, but mostly the gaps are flat blanks.  That, I’m used to.  I’ve requested my medical and therapy records to try to piece together those times.  I’ll dig out photo albums and talk to people who knew me then.  I’ll be able to place something in those white spaces.

But even more disturbing to me is that I can’t remember the things I did journal about as recently as two years ago.  Some of the images are a little clearer, some of the emotion easier to touch, but the details of my life continue to slide into oblivion.  Once my days and nights leave the Now, they march like little lemmings off the cliff of Recall.

It’s hard for me right now to keep from making up stories about that, to refrain from following my Dark Brain’s search for the reason why, to not obsess about the possibilities thrown into depression’s sea-foam—electroconvulsive therapy, drugs, genetics . . .  

In truth, it doesn’t matter why my memory is so damaged.  What matters is how I deal with it now.  And aside from keeping my brain as healthy as possible, it seems keeping a record might be helpful.  If I ever thought journaling was self-indulgent, I don’t anymore.  It may be the only way to hang onto my days once they’ve passed.

While this current episode washes through, I’ll try to hold this idea lightly, try not to be frightened by what I’ve found, try to just breathe and wait.  If it still seems important on the other side, then. . . well . . . we’ll see.

The Best Version of Me

Maybe I’m manic.

That’s always the first thing that comes to mind when this much joy bubbles up—which reminds me to hold the glee as lightly as the depression, without grasping or identifying with either.  So, with caution in the back of my mind, I can enjoy this delight.

The source, of course, is the story.  I’ve been working on a rewrite of my novel, Callinda, for a year now, and as I get closer to the climax, it has picked me up and carried me.  Every day, I’m surprised by what the characters do, the turns in plot, the places they are required to go.  Even though I have the whole story outlined with detailed notes, they break through those fences and find new ways to tell their tale.  I’m awestruck.

When I am writing, I am the best version of me.  The Creative Energy moves through me like water, raising me up and floating me out to where the ideas drift across my skin like lotus blossoms.  I can feel my mind open like a bud in the way it unfurls and s-t-r-e-t-c-h-e-s toward the sun.  There’s a peace that settles in and a knowing—I am doing what I was made to do.

Even during the worst bipolar episode, part of me can still write.  Callinda taught me that when I wrote the first draft during the darkest of my dark days.  I was sick with relief that the ECT, the drugs, and the trauma didn’t take that from me, too.  I was changed in fundamental ways, but I was still ME.  I was still a writer.

And, wonder of wonders, I became a better writer.  No more writer’s block, no more fear of failure or of not being a good enough story-teller.  All those obstacles dropped away after I survived my suicide attempt.  I’m alive, so I write.  It became as simple as that.

There are still days when I futz about my contribution to society, my purpose, my reason for being.  Those are the days when the depression comes and yanks my thoughts off true.  I know why I’m here.  I know what my work is.  I’m doing it.

And it gives me joy.

Count the Blessings

I’ve been down with an intestinal flu the last couple of days.  Nothing to do but watch movies, drink ginger ale and ponder the year that’s about to end.  But pondering can be a dangerous exercise, especially when I’m sick and in the middle of an episode.  I’ve learned it’s never a good idea to give too much attention to the thoughts that swirl up then.  Too much darkness, too much regret, too much grief.  So instead, I’ll focus on a few of the blessings 2011 brought me.

A place to sell my art cards.  My last visit at The Perfect Setting was disappointing compared to all the other times I’ve sold my cards there.  Pam, the owner, placed another employee in charge of the greeting cards.  This person pulled a couple of mine as “inappropriate”.  It seems she and I don’t share the same sense of humor.  So, Pam bought only half of the bunch I brought in this time instead of all of them.

Even though I know better, I took it very personally.  I know every shop has to make careful selection and cater to the clientele, but it surprised me since Pam always seemed to love everything I brought in.  Every artist has to tailor their work to fit the market—I know and understand this.  It just caught me on a very bad day, and I haven’t been able to sit at my studio table since.

This isn’t sounding much like gratitude.  But I am extremely grateful to Pam for taking a chance with my work.  She hung my weird collages even though no one in Marshalltown will ever buy them.  She bought all my cards, even when her other employees raised eyebrows.  She let me be the square peg in the town’s round hole—no one else here has ever done that for me.  Yes, I’m grateful.  And eventually, I’ll start making more of the cards that the town will accept—along with a few naughty ones.

Healing.  This year I learned how to manage without psychotropic medication.  I developed my Bipolar Bad-Ass Training guidelines.  I graduated from the Silver Sneakers water exercise class to the deep water, high-powered, water aerobics class.  I pushed the envelope of my reading disability and actually finished eleven whole books this year.  I’m learning how to be a woman alone without being lonely all the time.  I’ve moved past my fear of cooking and can now fix supper for myself every night.  I’ve started again on the weight loss journey, losing 12 pounds since my visit with the allergist at the beginning of December.

It’s an important practice to remember all the healing this year brought, all the hard work and dedication I put into it.  The illness always grabs center stage.  The loss of Will, the scrambled routine, the swamping thoughts tear down self-worth and confidence.  It’s so easy to see only failure.  So, remembering the success and joy play a vital part in bringing reality back to true.

Saying Good-bye to my dad on my terms.  I am deeply grateful that I was able to spend so much time with my dad in his final days and participate in his funeral in a meaningful way.  It was a gift.  Just as easily, my illness might have flared like it did this past Christmas, incapacitating me and keeping me from any human interaction.  Frankly, I expected to be a nut case during my dad’s rituals, and the stress did eventually cause an episode.  But I was fully there when I most wanted to be.  A miracle.  A prayer answered.

These are just a few of the gifts the Heart of the Universe placed in my lap this year.  What treasures did you receive?

Big Brother Addiction

Hi.  My name is Sandy.  And I’m a Big Brother addict.

I believe Reality TV is the scourge of television.  It panders to our lowest animal instincts, serving up people acting their worst and getting famous for it.  But, America loves a train wreck, and watching people behave like two-year olds in dangerous grown-up bodies seems to be the wreck of choice.

I, alas, am no exception.

I started watching Big Brother the summer after I moved home to Marshalltown.  I was still loopy from ECT treatments I had that winter, and changing medications every two or three months.  I was not in my right mind, okay?  I couldn’t help myself.

Cast of Big Brother, Season 13

I don’t know about other reality shows (because I don’t watch them), but Big Brother puts people in a pressure cooker, then records the results for all the world to see.  Players start out with integrity and compassion, but over the course of the summer, lose that to the drive to survive in the game.  They forget they’re playing a game, and take the posturing and manipulation of others personally.

And then the stress just gets to folks, so emotional outbursts and fights become more common as the season advances.  Some players enter the game with every intention of lying and cheating their way to the end, but the surprising friendships they develop with other players completely changes their strategy.  Alliances form, dissolve, and reform.  “Show-mances” develop, romantic relationships squeezed out by all that forced intimacy.  It’s all very human.  And fascinating.

This past Thursday night, my favorite player got evicted from the Big Brother house.  Jeff Schroeder first played Big Brother two years ago.  He developed a show-mance with fellow player, Jordan Lloyd, which was chaste (Jordan would only let him kiss her on the cheek) and sweet.  He sacrificed plays in the game for her, and she faithfully supported him.  Their romance continued off-screen, and Big Brother invited them back this season.

Like the other players in the pressure cooker of Big Brother, Jeff lost his temper, took things personally, and fought hard in competitions.  But, unlike most others, he never lost his integrity.  He talked straight and kept his word.  He stayed loyal to those in his alliance, even when they didn’t act in his best interest.  He continued to treat Jordan with respect, acting as her protector and partner.  Jeff maintained his sense of humor and his perspective, and always found his way back to Center.

I imagine when players recover from the trauma of participating in Big Brother, they must be embarrassed, or at the very least see they’re not quite the kind/honorable/humane people they thought they were.

I imagine some of their parents must wear disguises to the grocery store.  But, when I think of Jeff’s family, I can only imagine how proud they are.  He’s an unlikely role model, a Reality TV version of The Hero.  He was a surprise treasure amidst the train wreckage strewn across TVland, and I wish him well. (Go, Jordan!)

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