Sunday, October 31, 2010


Things I missed about home:

Mom (although I talked to her 3-5 times a day, everyday)
Going places
Books (I ran out while there)
Did I mention Elsie?
Comfy couches and chairs
Good food

Things I won't miss about respite:

It being assumed that I smoke/drink/do drugs
Hearing "SMOKE BREAK!!!!!" 8 times a day, starting at 6:30 AM
The train that was a hundred? two hundred? feet from my room and going over a crossing, so it tooted. Loudly. Three or more times every hour, including at night...
Thus, I won't miss sleeping in earplugs AND headphones.
One option for each meal, and if you don't like it you go hungry
Not being able to take my meds exactly on time
Nurses forgetting to give me meds
Being almost made to go to NA/AA meetings every night
The guy that refused to shower or wash his clothes for 6 days
Bathrooms that smell so bad I gagged every time I went in

Anyway, I could go on. It was determined that my problem was never really depression, but rather OCD. Basically, I had obsessive, intrusive thoughts. With depression, people typically want to act on suicidal thoughts. With OCD, the thoughts overwhelm the person, and they might be compulsed to act but they don't actually want to. I was put on a low (about half the usual) dose of lithium, which is used for severe bipolar, schizoaffective, etc. I could tell the difference after about 6 hours of taking the first dose. Now, I only get scary thoughts about 3 times a day, and it's much easier to "change the channel" in my brain. I had a really good doctor!

I did quit my job, however, and will have to go back on cash assistance (which is only $205/month) until I either get SSI or go back to work. I'm not in a hurry. I'd rather be poor that that overwhelmed again.

I'm staying at Mom's until the time arrives such that I can get staff at my apartment. Not sure when this will be, but, whatever. I'm fine in the meantime.

During the day I have to find ways to stay busy.

Elsie is super happy that I'm home. I hope Mom is too. Don't really care if Bob's happy or not... well, okay, I do care a little.

Sorry for the vagueness of what I'm about to disclose, but: I've been prayerfully considering doing some sort of advocacy for a long time, and an opportunity has sort of fallen into my lap, but it requires nomination, application, interview, etc. I have no idea if I'm what they're looking for, but it would be pretty cool. If you could send up some prayers that maybe something would come of that, if that's what God wants, then that would be awesome. I'll let you know more about it if I hear anything.

Wednesday, October 27, 2010

Just checking in

This post won't be exciting. I'm limited on time.

I'm currently staying at a mental health respite center. Most of the people there are coming off drugs and alcohol as well.

Most people think I'm weird. One guy kind of makes fun of me for liking Disney. It's not a big deal, but it upsets me.

We have a computer and Internet access, but every. single. website. is blocked, so it's useless.

The problem turned out to be not depression but OCD, and I was put on lithium (a low dose, 300 mg). I'm honestly quite fine now.

I should be out November 5th. 9 days.

Thursday, October 21, 2010


I have a big decision to make, and I don't have long to make it.

I know I'm not safe at home. If I knew that, say, on Monday, I could go to respite, I think I could make it. But I don't know. It could be weeks.

So my only other option is the hospital, and I'm leaning toward going, but I'm still not positive. Mom said she'll take me down anytime during the day, just not at night, because the DEC (emergency) is a nightmare at night. She's going to call me when my aunt gets to the office (family business) for my decision.

I'm halfway packed.

If I knew I'd end up on a good floor (young adult floor, depression/anxiety floor) I'd go, but I don't know that. I could end up on the autism/MR floor, which is wracked with the stench of urine and has people screaming 24/7. Not a place to get better. Last time I went, they said I was too "high-functioning" (not my favorite descriptor) for that floor, but what if the person doing the intake doesn't say that this time? What if there are no beds on the floors I like? What if, by asking, I make her think I'm a beggar (as in, can't be chooser) and tick her off?

I don't know what to do...

Wednesday, October 20, 2010

Tea and things

Sometimes, I like to think that someone out there in Blog World is just sitting at the edge of her seat, biting her nails over what will become of the whole respite/hospital/home situation. I like to pretend that I'm interesting, sometimes...

But really, things move slowly. Today, George from the Bureau of Autism came to the house to do the SIB-R (an interview) about what I can and can't do, to see what services I need. It's funny how I can do some pretty complex things (provide a written report on an article from a technical journal, for example) but struggle with things like saying please, thank you, hello, goodbye, consistently and reliably. Mom's commentary: "That's the autism."

Reliable. That's my problem.

What I can do on a good day is so different than what I can do on a bad day. On good days I can definitely work. But then the bad days come, and I have to quit my job. So do I never work? It's not really fair to an employer to only be function 10 months out of the year, you know? Sigh.

In other news, Sister joined the junior board for Quality Services for the Autistic Community (or something like that) in NYC. She is also seeking to volunteer at the mental health ward at the hospital. Sister really tries. She's cool like that. I hope that I can take a page out of her book and do some volunteer now that I'm not really working.

I wanted to tell you that I have fallen in love with tea. Just regular, decaffeinated Lipton's, black tea. With milk and 1 1/2 big spoons of sugar (it's sweet, I know). It's delicious. I drink it multiple times a day, and it works just like a Klonopin. I swear. It calms me right down. So that's my new thing, tea. Now if my stepdad would stop yelling at me for slurping my tea, we'd be in good shape. Or if I could just get back in respite, where I could slurp as much as I want, and no one cares...

Sunday, October 17, 2010

Say it with me

I say: God is good!

You say: All the time!

I say: All the time!

You say: God is good!

Or if you're the founder of Emmaus House, Lorraine, you say what her aunt told her when she was younger: "God is good and He said He would!"

I have no idea in which direction my life is headed right now. All I know is that my funding ran out today and I'm back at Mom's with Elsie P. I don't know what tomorrow brings.

I do know that Lorraine and the head of the Autism Waiver, Dr. Sutton, are working very hard to pass my Waiver paperwork through ASAP and get me back to Emmaus sometime this week. But that's not definite... just what everyone is hoping for.

I don't know if I'll ever move back into my own apartment, as much as I love it. It might be manageable with frequent staff (like all waking hours), but not how it was. I just fall apart too quickly when I'm alone so much.

I don't know if I'll go back to work anytime soon. I'd like to stay on one day a week, but if I'm staying in respite for more than a few weeks at Emmaus, Mom's not sure it's a good idea to stay on at all. That would mean literally no income. None. Nothing. Nothing from the government right now, either. But then, in respite, how much money do you really need? Your food is paid for, gas is paid for, all the big things are covered. If I do quit, I hope it's on good terms so that someday, when I'm in my own place with staff, and Boss has an opening, she will hire me back. That's the goal.

The hard part is that what I'm capable of on a good day is so great compared to what I can do on a bad day. And there are different sorts of bad days. There are days where it is hard to move (I get anxious if I'm not in "my spot"). There are days when I don't eat much. There are days when I'm just horribly depressed. Regardless of the sort of bad day I'm having (autism bad day, anxiety bad day, depression bad day), it helps to have other people around, so respite is a good thing.

I'll keep you updated, and remember: God is good!

Thursday, October 14, 2010

Hoping for a miracle

Well, things can never be easy.

My funding for staying at Emmaus runs out Sunday. The Waiver, while approved, hasn't really been set up and so cannot pay for much at this time. They're trying to expedite the paperwork so that funding will come through. Insurance won't cover it because it's not mental health, technically (though they will cover a much, much more expensive hospital stay) and MR services won't cover someone with autism. I'm betwixt and between, just like always, and no one knows what to do with me.

So I probably go home, back to my own house, Sunday around 5pm. Getting me out of my environment helped a lot, and I'm safe here with staff. But can I really go from full-blown suicidal to ready to go back to my apartment in four days? That's what they're asking me to do.

In the meantime, it's wonderful here. There is no therapy, but I don't need therapy right now. I need to be safe and calm and let things blow over. Then, and only then, will I consider therapy. Maybe that's not the way "they" like to do it, but that's what works best for me.

Please send prayers my way. I know I just asked, but I need to ask again. I'm scared about what will happen, and I don't want to go to the hospital. I want to stay here for a week or two and then go home (with staff at my house). Why, why, why can't I just get what I need?

Wednesday, October 13, 2010

Good ol' Boss

I was super nervous about my job. Mom called my boss to give her a vague "she needs to be hospitalized, probably for about a week" (not that I'll be home in a week, but I can go back to work from Emmaus then). Took her a day and a half to call back, but Boss told mom that I'm a good worker and to take the time I need then just give her a day or two's notice and she'll put me back on the schedule. Mom said she couldn't have been nicer. I hope a week will do it.

I'm sooo nervous to go to Emmaus House. What if I don't fit in? I mean, I know I'll be more independent than a lot of what they're used to. They told Mom that they'll evaluate me to see what program to put me in, and that I might not be recommended to go back to my own house after respite, but rather a supportive apartment with staff. Time will tell. I'm fine with a different house, but I want to keep Elsie with me.

So basically, if you could send some prayers my way that I get to stay close to my kitty, I'd appreciate it. She'll stay with Mom (where she's totally fine and loved and everything) while I'm away. I'll miss her, but I won't worry about her one bit. At least, I'll try not to, because I know that it's completely unnecessary...

Tuesday, October 12, 2010

Emmaus House

Well, it's been 10 months. Last time I only made it 7, so this is good. In lieu of heading back to the hospital, I'm going to a respite center for people with MR and ASDs. It should just be for a few weeks. I can go to work from there and everything, although I'm hopefully going to take a week off and get my feet back on the ground. Elsie P will go go Mom's. Leigh will still come to visit before she leaves for California (and she will bring Felicity, the American Girl doll who is going away forever and thus I'll never get her because she's expensive, but I'm just over the moon to hang out with her for a while...).

I will have my cell phone, my regular clothes, access to a computer, my weighted blanket, Tigger, access to my own toiletries (trust me, this is huge, lol)... even my own room.

Will let you know how it's going when I get there!

Monday, October 11, 2010

For Amanda

Leigh and I making silly faces. Neither of us really knows how to do that, so it comes out even more ridiculous.

The street in town, where the parade came. I forgot I had my camera during the parade, though...

Disclaimer: I hate this picture of myself. But Leigh says I'm "really" smiling, and Chaos (the cat) looks fantastic, so I had to put it up. Chaos is one of the cats in the music store in town. He's 16 now and can't see very well, but I love him. I came in after not seeing him in 7 months and he ran over and let me pick him up and puuuurred and licked my face. Most of the day kind of stunk, but Chaos was good old Chaos :)

Saturday, October 9, 2010

Rules to live by

1. Don't post when you're angry.

2. Friends don't ditch.

3. Friends aren't mean.

4. Causing hurt does not fix hurt.

5. Pick a picker ball (see Jess's post here), not skin.

6. Pretty is as pretty does.

7. You can have more than one best friend.

8. Different, not less.

9. When in doubt, hold Elsie.

10. Leigh's not a jerk; don't treat her like one.

Wednesday, October 6, 2010

You're beautiful

As I was driving back from Mom's for the second time (I got home, and immediately she called with the 9000 things I'd forgotten), I heard this song on the radio. To be honest, I'm glad I had to get back in the car to meet Mom so that I could hear this song tonight. I'm not going to go into some big long discussion of it, because I think you'll be able to see why it meant a lot to me. I hope it blesses you, too.

MercyMe, Beautiful

Days will come when you don't have the strength
And all you hear is you're not worth anything
Wondering if you ever could be loved
And if they truly saw your heart
They'd see too much

You're beautiful,
You're beautiful
You are made for so much more than all of this
You're beautiful,
You're beautiful
You are treasured, you are sacred, you are His
You're beautiful

Praying that you have the heart to fight
Cuz you are more than what is hurting you tonight
For all the lies you've held inside so long
But they are nothing in the shadow of the cross

You're beautiful,
You're beautiful
You are made for so much more than all of this
You're beautiful,
You're beautiful
You are treasured, you are sacred, you are His
You're beautiful

Before you ever took a breath
Long before the world began
Of all the wonders He possessed
There was one more precious
Of all the earth and skies above
You're the one He madly loves
Enough to die!

You're beautiful,
You're beautiful
In His eyes
You're beautiful!
You are made for so much more than all of this
You're beautiful!
You are treasured, you are sacred, you are His
You're beautiful!
You are made for so much more than all of this
You're beautiful!
You are treasured
You are sacred
You are His

Sunday, October 3, 2010

Unsorted sorts

I hate that nagging feeling. It's been a few days. Come on. Write.

The truth is that I don't want to write. I don't want to process. I don't want to feel.

I want to be locked away to be alone until this thing passes. Heck, the way I've been acting, I fully deserve to be locked away. Throw away the key, even. Leave me there until I can be human, or something like it.

To top things off, work is complicated socially, and Elsie and I are forced to spend the week at Mom's because my car needs to be repaired, thus making me carless and dependent on Mom for getting to work. My computer is on the tiniest little too-low end table, and my back side is on a rickety old dining room chair from perhaps 1985. Elsie is handling things far better than I am.

It's probably in your best interest to stay far, far away from me right now. If you choose not to heed my advice, don't say I didn't warn you.