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.
Friday, January 28, 2011
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.
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 autisticspeaks@gmail.com. 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.
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 autisticspeaks@gmail.com. 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.
Friday, December 31, 2010
just life.
this writing thing sure isn't getting any easier. but i want to do it, so i'm going to give it a shot. forgive the scatteredness?
the first thing that comes to mind is new year's eve. it's probably my least favorite day of the year. i mean, i "went out" to a movie with a guy when i was 16, but other than that, i haven't ever gone anywhere or seen anyone. for quite a few years, i've either been crying because i'm yet again by myself or sleeping when the big time comes. today, i'll babysit from 6:30-9 (seven children; two with autism and one i highly suspect has asperger's) so wish me luck. it's been an uncomfortable, antsy week, so it should be interesting.
christmas was mostly really good... my dad gave me a sewing machine to make my doll clothes, my mom got me some cute odds and ends even though she already got me my laptop, and my sister got me my coveted, no-longer-available felicity american girl doll. she's beautiful and she goes even from room to room with me. so far she has a christmas dress and bonnet, a blue button-down shirt and brown polka dot skirt, a blue flannel nightgown and mob cap, and i'm just starting to work on a patchwork quilt for her. i can't say i'm anything wonderful on the machine yet, but i'm getting better and enjoying it.
i'm quite frustrated at myself for not being able to write any sort of cohesive blog post anymore. all i can do is kind of update and go over what's been happening. what happened to real posts? is it that nothing happens anymore, or is it that i just can't write about it?
the first thing that comes to mind is new year's eve. it's probably my least favorite day of the year. i mean, i "went out" to a movie with a guy when i was 16, but other than that, i haven't ever gone anywhere or seen anyone. for quite a few years, i've either been crying because i'm yet again by myself or sleeping when the big time comes. today, i'll babysit from 6:30-9 (seven children; two with autism and one i highly suspect has asperger's) so wish me luck. it's been an uncomfortable, antsy week, so it should be interesting.
christmas was mostly really good... my dad gave me a sewing machine to make my doll clothes, my mom got me some cute odds and ends even though she already got me my laptop, and my sister got me my coveted, no-longer-available felicity american girl doll. she's beautiful and she goes even from room to room with me. so far she has a christmas dress and bonnet, a blue button-down shirt and brown polka dot skirt, a blue flannel nightgown and mob cap, and i'm just starting to work on a patchwork quilt for her. i can't say i'm anything wonderful on the machine yet, but i'm getting better and enjoying it.
i'm quite frustrated at myself for not being able to write any sort of cohesive blog post anymore. all i can do is kind of update and go over what's been happening. what happened to real posts? is it that nothing happens anymore, or is it that i just can't write about it?
Tuesday, December 14, 2010
Take 5
For nearly 18 months (17 and some odd days, to be exact), I have faithfully, every 2-3 days, written a blog post. It's rare that I go more than 3, though I'm sure it's happened.
Before you panic about where this is going, let me explain. This is not a signing off, but rather just a break. I'm facing some demons in my life right now that require my full attention. It's stressful to constantly be thinking about the next blog post. I'll be back. It might be days, or weeks, or months; I might pop back in when something big happens and update you. But for the time being, I'm not going to look for things to write. I'm going to let the writing come to me. Fair enough?
Will you be here when I get back?
Before you panic about where this is going, let me explain. This is not a signing off, but rather just a break. I'm facing some demons in my life right now that require my full attention. It's stressful to constantly be thinking about the next blog post. I'll be back. It might be days, or weeks, or months; I might pop back in when something big happens and update you. But for the time being, I'm not going to look for things to write. I'm going to let the writing come to me. Fair enough?
Will you be here when I get back?
Friday, December 10, 2010
Birthday surprise
After a wonderful trip for ice cream with friends, a visit to Mom's office, and a pot roast sandwich at Eat n Park, I headed home so that L could pick me up and we could go to the party (my Esther Bible study was showing One Night with the King at the leader's house). I was freaking out, texting about how nervous I was, when L texted me to say that she was really sick and just couldn't make it. I wasn't at all mad at her, but I started to bawl, because, well, I don't handle changes in plans well.
I had about a half hour to decide if I would still go. The answer seemed obvious. Go to a new place, at night, in the dark, all by myself, with no one even to meet there? I've been studying with these women for months, but I really only know H and L (who wouldn't be there) and the two women in charge (K amd M), a little.
But it was my birthday. I'm 23 now. I don't want social anxiety and autism to get the best of me all the time like it awlays has. Granted, this would be a huge step, because I don't go anywhere besides the church and the library without someone to keep an eye out for me. This would be the first time I truly flew solo maybe... ever?
So I called K, the women whose house the party was at. I asked if she had a pet, kids, or a spare room to escape to. She had all 3. K knows that I have autism and knows a little bit about what I deal with, so when I explained that I typically don't do parties, and never by myself, that this would be really unusual if I came... she said that she had some birthday things for me and would love it if I went, but understood if it was too much.
So I went.
I got here 15 minutes early. I can't walk into rooms full of people, so I get everywhere I go significantly early, and I think people are used to it. As L said, "I noticed that!" K introduced me to her dog, Ruby (a red lab!) and her kids, who are beyond sweet. I hung out downstairs with the dog while people filtered in. When I did go upstairs, I kind of wandered around by myself and didn't talk to people. There was over an hour of free time before the movie started. Finally, a woman who I actually ran into at Dr. J's office a few weeks ago after Bible study (she was there for her sons who have ADHD) came over and started to talk to me. While I can't approach people to talk to them, I'm just fine when people come over to me to talk... sometimes, maybe even a little too friendly.
So I talked for 10 minutes, which was good, for me. K gave me a birthday gift and said she had a birthday cake for me, which was so sweet. She asked if I wanted everyone to sing to me, and I said please no! I hate to be sung to, even by family.
I left around 9:15, an hour before the movie was over, but I was pretty tired. K and M saw me out and said that they were so impressed that I came. I like that they get it and understood how difficult it was. M really kept an eye on me and made sure I was alright. I emailed them both, thanking them for being so accommodating and helpful. I'm honestly kind of proud of myself for facing such a big fear. I can't say that I'll attend Bible study (80 women as opposed to last night's maybe 12) without someone, but it's a big step in the right direction for being 23!
I had about a half hour to decide if I would still go. The answer seemed obvious. Go to a new place, at night, in the dark, all by myself, with no one even to meet there? I've been studying with these women for months, but I really only know H and L (who wouldn't be there) and the two women in charge (K amd M), a little.
But it was my birthday. I'm 23 now. I don't want social anxiety and autism to get the best of me all the time like it awlays has. Granted, this would be a huge step, because I don't go anywhere besides the church and the library without someone to keep an eye out for me. This would be the first time I truly flew solo maybe... ever?
So I called K, the women whose house the party was at. I asked if she had a pet, kids, or a spare room to escape to. She had all 3. K knows that I have autism and knows a little bit about what I deal with, so when I explained that I typically don't do parties, and never by myself, that this would be really unusual if I came... she said that she had some birthday things for me and would love it if I went, but understood if it was too much.
So I went.
I got here 15 minutes early. I can't walk into rooms full of people, so I get everywhere I go significantly early, and I think people are used to it. As L said, "I noticed that!" K introduced me to her dog, Ruby (a red lab!) and her kids, who are beyond sweet. I hung out downstairs with the dog while people filtered in. When I did go upstairs, I kind of wandered around by myself and didn't talk to people. There was over an hour of free time before the movie started. Finally, a woman who I actually ran into at Dr. J's office a few weeks ago after Bible study (she was there for her sons who have ADHD) came over and started to talk to me. While I can't approach people to talk to them, I'm just fine when people come over to me to talk... sometimes, maybe even a little too friendly.
So I talked for 10 minutes, which was good, for me. K gave me a birthday gift and said she had a birthday cake for me, which was so sweet. She asked if I wanted everyone to sing to me, and I said please no! I hate to be sung to, even by family.
I left around 9:15, an hour before the movie was over, but I was pretty tired. K and M saw me out and said that they were so impressed that I came. I like that they get it and understood how difficult it was. M really kept an eye on me and made sure I was alright. I emailed them both, thanking them for being so accommodating and helpful. I'm honestly kind of proud of myself for facing such a big fear. I can't say that I'll attend Bible study (80 women as opposed to last night's maybe 12) without someone, but it's a big step in the right direction for being 23!
Thursday, December 9, 2010
Birthday dreams come true
What's different about 23? Let me tell you a story, not for any sort of sympathy, but so that you understand the importance of today.
When I was 16, my mom and my best friend threw me a huge Finding Nemo surprise party. It had family and friends from all my different activities... school, dancing, color guard, camp. Everyone was there. I was quite sick, but that aside, it was amazing.
Several months later, that same best friend and I were talking online, and she told me to stop talking and quit responding to me (I was confused). We were supposed to go to a party that night, and she didn't pick me up. My best friend that I had spent every day with (vacations aside) for 12 years, for the next year and a half, never called again. When I called her a year and a half after the initial incident, she (frighteningly calmly) said the meanest thing I could ever imagine a person saying, and then meaner. I was bawling, and she hung up on me. That was the end of that.
My closest (and only) friend in college knew this story and promised that it would not repeat itself. It didn't, until she broke up with her fiance and got a new boyfriend and just... went away. Walked away from me on the sidewalk one day (I was on crutches, going slow), with the boy, and never walked back. When asked what was going on, also said some extremely mean things. Again, that was that.
If you're wondering why I don't think Leigh will do the same thing, you don't know Leigh. I mean, there's a lways the tiniest fear in the back of my mind (like, I fear checking my email because I might get a "I don't want to be friends with you" email... but Leigh just would never do that and it's illogical to think she would).
Anyway, back to my story. I think birthdays are the greatest thing in the world. It's a day to celebrate... me! I'm not a big fan of celebrating myself, because I'm shy and rather uncomfortable in my own skin, on other days, so I take full advantage of my birthday. I'm bad at waiting for people to call and give me birthday wishes... instead, I tend to call them because I'm so excited that it's my birthday! Not everyone, but definitely immediate family (just called Dad: "Hey, I'm supposed to call you on your birthday!"). It's a day I can drink as much diet soda as I want, eat whatever I feel like, and bug the kitty as much as I wish. It's my day.
My last 6 birthdays have been spent with my mom, mostly. Last year I actually had surgery on December 8th, so I was drugged and laying on the couch. But I had invited my whole Mom's side of the family over to celebrate, and they all sat on the floor and fussed over me, and I thought life couldn't get any better than that birthday.
Until this year. This year, today, I am going out with friends. H and L, two women in my church, are taking me to an old fashioned ice cream shop downtown. Then, tonight, my giant Bible study is meeting at someone's house to watch a movie (L is curbing my anxiety by picking me up and going in with me and staying with me, so I'll be fine). In between, I will go to Mom's work to be with my mom on my birthday, because that's the most important.
I don't know how to explain the gravity of this event. Friends. I have friends. Friends who are used to melt downs because their kids have them, who are used to anxiety, who don't mind my oddities and social awkwardness. Friends who seek me out and invite me over. Friends who take me out on my birthday. Although ice cream is a huge plus, I almost don't care what we do. Just being with my friends is more than I could hope for.
When I was 16, my mom and my best friend threw me a huge Finding Nemo surprise party. It had family and friends from all my different activities... school, dancing, color guard, camp. Everyone was there. I was quite sick, but that aside, it was amazing.
Several months later, that same best friend and I were talking online, and she told me to stop talking and quit responding to me (I was confused). We were supposed to go to a party that night, and she didn't pick me up. My best friend that I had spent every day with (vacations aside) for 12 years, for the next year and a half, never called again. When I called her a year and a half after the initial incident, she (frighteningly calmly) said the meanest thing I could ever imagine a person saying, and then meaner. I was bawling, and she hung up on me. That was the end of that.
My closest (and only) friend in college knew this story and promised that it would not repeat itself. It didn't, until she broke up with her fiance and got a new boyfriend and just... went away. Walked away from me on the sidewalk one day (I was on crutches, going slow), with the boy, and never walked back. When asked what was going on, also said some extremely mean things. Again, that was that.
If you're wondering why I don't think Leigh will do the same thing, you don't know Leigh. I mean, there's a lways the tiniest fear in the back of my mind (like, I fear checking my email because I might get a "I don't want to be friends with you" email... but Leigh just would never do that and it's illogical to think she would).
Anyway, back to my story. I think birthdays are the greatest thing in the world. It's a day to celebrate... me! I'm not a big fan of celebrating myself, because I'm shy and rather uncomfortable in my own skin, on other days, so I take full advantage of my birthday. I'm bad at waiting for people to call and give me birthday wishes... instead, I tend to call them because I'm so excited that it's my birthday! Not everyone, but definitely immediate family (just called Dad: "Hey, I'm supposed to call you on your birthday!"). It's a day I can drink as much diet soda as I want, eat whatever I feel like, and bug the kitty as much as I wish. It's my day.
My last 6 birthdays have been spent with my mom, mostly. Last year I actually had surgery on December 8th, so I was drugged and laying on the couch. But I had invited my whole Mom's side of the family over to celebrate, and they all sat on the floor and fussed over me, and I thought life couldn't get any better than that birthday.
Until this year. This year, today, I am going out with friends. H and L, two women in my church, are taking me to an old fashioned ice cream shop downtown. Then, tonight, my giant Bible study is meeting at someone's house to watch a movie (L is curbing my anxiety by picking me up and going in with me and staying with me, so I'll be fine). In between, I will go to Mom's work to be with my mom on my birthday, because that's the most important.
I don't know how to explain the gravity of this event. Friends. I have friends. Friends who are used to melt downs because their kids have them, who are used to anxiety, who don't mind my oddities and social awkwardness. Friends who seek me out and invite me over. Friends who take me out on my birthday. Although ice cream is a huge plus, I almost don't care what we do. Just being with my friends is more than I could hope for.
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