Daft Trek

Social Services, the Final Frontier.  These are the voyages of one unclassifiable nut-job.  Her ongoing mission: to explore convoluted government gobbledy-gook; to seek out new services that might actually help; to boldly leap over the cracks in the system where no one has leapt before.

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After I finished the Intensive Psychiatric Rehabilitation program in late June, the search was on to find some kind of support that might fill the gap.  IPR wasn’t therapy, but working with Aly for two hours twice a week turned out to be the best therapy I’d ever had.  How can you not go deep and actually problem-solve with that much one-on-one time?  Most participants in IPR spend half their time in groups, but we had trouble finding peers for me (I’ve got so much insight, you know), so Aly and I just met by ourselves.

We both knew no social service could provide what Aly gave me, so we looked at the kinds of support I might find.  She and my therapist thought Lutheran Services of Iowa might be a fit.  I went through two-hour assessments with both my caseworker and LSI, was approved, and started seeing a caregiver in July.

I have a caregiver.  To say I have mixed feelings about that is like saying Emmett is a little nervous (though, here’s a barely-related photo of both guys sitting next to me as I write this with Em combed and smiling).

Together

Anyhoo, it’s taken me all summer to get used to the idea of being a person who could benefit from a caregiver.  When I look at it in terms of what I need to stay out of the hospital, I get it.  But, like everything else concerning my mental health, I don’t fit in the usual categories, so we had to get creative.

Leanne, my caregiver, and I met for coffee once a week all summer at the new coffee house (Yaay! Marshalltown finally has a coffee house!)

Brew House

This was all part of my care plan—to get basic support.  It’s not therapy, but more than friends and family can provide.  For that hour, I get to talk without worrying about my social skills or being reciprocal in any way.  Most human interaction is two-sided.  Conversation is give and take.  And, while Leanne and I do converse, the point is we don’t have to.  For that hour, she’s there for me, and if I need all that time to process, I don’t have to feel guilty, or selfish, or worry about ruining our relationship.  Over the summer, we honed that process to where we’re both comfortable with it.  And it is a true and valuable tool.  Like my new soaking tub, I can relax with Leanne now and just let go.

The other part of my care plan is for Leanne to help me keep my apartment clean this winter.  Since I’m allergic to dust mites, I need a clean living space in order to avoid the asthma flares that lead to bad colds and, often, pneumonia.  And, since winter historically brings more severe depressive symptoms, cleaning (like anything requiring effort) flies out the window.

Halli, the LSI director, told me that their caregivers aren’t housekeepers.  They help clients set goals and work alongside them.  I’m expected to do the real work.  I like that concept.  I asked my sister to do that once, to come over and just help me figure out how to get my place cleaned.  I remembered what a huge help that was.  If I could get used to a stranger coming into my home, I thought that kind of support might help me avoid getting sick so much.

So, last Wednesday, Leanne came over and helped me replace the filters in my air vents.  It’s a big job, I even got the consultation from specialists of air duct cleaning in Kansas City, MO.  All the vents are in the ceiling.  I put filters in the ones I could reach by standing on a chair, but that was five years ago.  Last week, with a real step-stool, we replaced the black filters (ugh!) and got all the vents covered in the hour Leanne helped me.  I spent the rest of the day cleaning the grill on the intake vent (gross!) and laying filter material across that, too.

Intake Vent

Awesome!  Except I didn’t think to wear a mask.  Oops.  Now I’m fighting the very thing I tried to avoid—a bad head cold that will probably go south soon.  I should have known better.  I wore a red shirt that day, and we all know what happens to those guys.

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.

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