Friday, January 28, 2011


DBT (dialectical behavioral therapy) is a widely used therapy program that was developed by Marsha Linehan for use with patients with borderline personality disorder. It is now used with mood disorders, abuse survivors, and substance abuse issues. The mood and anxiety program I'm in as my outpatient treatment program post-hospitalization is solely DBT-focused. At first, the worrier in me wondered if the fact that I knew DBT worked well for me meant that I had BPD (a diagnosis I really fear)... but using my wise mind (a DBT skill!), I know that correlation does not imply causation and that I should not worry about that.

Basically, DBT is awesome. It has four modules (mindfulness, distress tolerance, emotion regulation, and interpersonal effectiveness). Today, as skill practice, we played a game called Moods in which you choose a card with a mood on it and a card with a totally random saying or phrase, and you say the phrase in the specified mood. The moods aren't all easy ones, either... they include bashful, indignant, and hopeful. Try saying "there's gold in them there hills" indignantly. Go ahead. It's not easy!

Think about how much these skills can help a person with ASD. Distress tolerance? Emotion regulation? Interpersonal effectiveness? Mindfulness? I mean, come on, this is huge. Why aren't people using this for people on the spectrum?! The study I'm in uses a cognitive therapy, CET (originally developed for schizophrenia), to treat ASD, and it's not even as helpful as DBT is for me. These skills are also hugely helpful for someone with an ED, I might add. We focus a lot on disrupting the cycle of emotion dysregulation which leads to engaging in problem behaviors (for me, that's restricting calories and overexercising).

I'm so excited to finally be in a program that might actually WORK. That would be new. In a good way.

Tuesday, January 25, 2011

Just getting my feet wet

Deep breath.

I'm not sure I'm ready for this, but here goes...

It's been 3 weeks since I went into the eating disorders unit at the hospital. My blood sugars, which were as high as 700 and as low as 39 (both really, really scary), are now in decent control. I'm off my insulin pump and back on at least 5 injections a day. My feet and legs are no longer swollen to double their size. I was on an IV for 3 days, because I was so dehydrated that I didn't pee for 24 hours. I had every GI issue imaginable, including 15 days of constipation. Yes. Days. My blood pressure was as low as 80/44, but it's solidly 120/80 now. My electrolytes in my blood were messed up and my I had starvation induced even-worse-hypothryroidism, but all of that is back to normal.

That's the difference between a diet and an ED. A diet is usually good for your body; an eating disorder can kill you, and, if left alone, will. Not everyone with an ED is at a scary-low weight, either.

So where from here? Well, first of all, I'm on a balanced 2200 calories a day. I got the go-ahead from the dietician at the hospital to work out for an hour 4 times a week in an attempt to lose one-half to one pound per week (as opposed to the 1-2 pounds a day I was losing before). I'm going to join the gym tomorrow when I get home from partial. Speaking of partial, the doctor at the hospital refuses to let me go to ED-focused partial. I have to go to general women's partial which focuses on depression and anxiety. Now, I'll give you that I have my share of anxiety, but I've had so much therapy for it, I'm not sure what else I can learn. I'm a little frustrated because I don't feel like I'm getting the treatment I actually need. But, it's not up to me, and I'll take whatever structure I can get. I start tomorrow at 9 AM.

This leaves one big question, which is the study I'm in. It's next door to partial, and it's from 3-6:30PM on Wednesdays, while partial runs 5 days a week from 9-3. It would mean one very long day (well, there will be several other really long days due to doctor's appointments and things like that). Basically, I'm strongly considering dropping out of the study. I don't see that I can continue with it right now, and it'll probably be a month before I have time and that's too long to keep skipping.

Elsie P and I are thrilled to be back in the apartment. Mom took me grocery shopping and I now have more food in my house than I've ever had... I'm stocked! It's neat to have options about what to eat instead of just one or two choices. I spent $80 on groceries this week, which I can't afford to do every week, but... well, we'll see how that works out.

Well, that's all I got for now. I'll let you know how this partial thing works out... I'm trying hard to be optimistic about it. They almost sent me to residential, but my insurance refuses to pay for it. Then they were going to send me to a month of respite, but there's a long waiting list so it's kind of pointless. So, praise the Lord, I'm HOME.

Monday, January 3, 2011

Lydia speaks

Usually, when I sit down to write, I have things written out in my head and I simply turn them into type for all of you to read. At the very least, I have a mental outline.

Not this time. There's nothing up there. I don't know where this post is going...

Here's what I'm thinking: I have different worlds. You all belong to my autism world. That's probably my biggest world, because autism and Lydia are inextricably entwined with one another. You can't say, "Oh, that autism," or "Oh, that's Lydia." I am it, and it is me.

But at the same time, there's more to me than autism. There's more to me than Lydia. There's this pesky, leaching, deadly thing... and while I'm not sure this is the right thing to do or the right time to do it, I'm going to tear down the wall. I have an eating disorder. I've had it for 10 years in March. A lot of physical damage can be done in 10 years.

The surviving-on-500-calories-a-day thing really isn't so bad, in itself. But when you add 10 miles of running or skipping the majority of the insulin I'm supposed to take, things get rough. You'll never hear me say this twice, but I feel horrible.

So, after losing 20 pounds in 3 weeks (that, this time, I could actually afford to lose... other times I haven't been so lucky), my therapist wants me to head to the ER sometime this week. Everyday I go without insulin is another step toward kidney failure, blood toxicity, heart attacks, blindness, you get the idea.

Before you make a snap judgment and say, "Just do it! It's not that hard!" I ask you this: would you say that to me if I were plugging my ears at the movie theater? If I were crying in a crowded, noisy room? If I snapped when someone tried to hug me? No, you wouldn't. But many people who don't understand autism would, and do, and have to me. So, just because you may not understand EDs, it doesn't make the struggle any less real.

If you don't hear from me for a while, it's because I'm at the hospital. If something big happens, I'll have Leigh update you (er, I haven't exactly asked her if she would, but...hehe).

If you want to help me get better, please send cat pictures to They go a looong way.

I think I should rename my blog to Lydia Speaks, because that's what is is from now on. It's all of me. I hope that's okay.