>The price I pay

>In the world of autism, so much is controversial. If you go trying to address questions like what causes it, how best to treat it at any given age, or whether to use medications, you’re going to hear people shouting from either side of the fence. I try to stay away from the controversial stuff on here, because I don’t want to go dividing anyone, but today, I’m going to breach one of the above topics. So, here we go, on why I use daily psych meds.

I have anxiety. Not just the kind that makes me worry and ask the same reassurance questions seven times, either. The kind that hits physically, that makes me feel like I just got startled half to death, all the time. It makes me feel like I’m going to through up. Okay, I have the other kind too… I’ll ask you over and over again the same question, because I’m afraid it’s not still true. I worry obsessively about certain things. About my cat. About my surgery. About Leigh going to Mexico, is the big one right now. I’ve had this anxiety since I can remember, although I never knew what to call it. I knew that when I went out too much, I didn’t feel good afterward and needed to stay home and stay quiet for a while. I thought that I was crazy for being that way, and that I was surely just like everyone else, that it was all in my head, so I pushed and pushed myself until I missed days of school at a time because it was just too much socialization, causing anxiety. Starting in second or third grade, I started to miss school like that. I got overwhelmed. I was first put on meds for the first time after having to leave my freshman year of college because my anxiety had gotten so bad that I was having one panic attack after another. I was at the end of my rope and didn’t know what to do. My mom came and got me, and I took the semester off while I got settled. I’ve been on meds ever since.

I started with just SSRIs. I was on Prozac until a year or so ago when my mom said she thought it wasn’t working as well as it good. She asked my psychiatrist, who at the time was an idiot, to put me on Paxil since it worked really well for a number of other people in my family. Buspar was also added for the anxiety, at a very low dose, which helped me. I did better on Paxil, but I slowly but surely gained weight. AWe switched psychiatrists last Spring, to someone who specialized in ASDs. This doctor was cold and uncaring, barely able to carry on a conversation. She took me off Paxil and put me on Celexa. I went through withdrawal and chaos ensued. That’s what let to my hospitalization from July 9th-17th of this year. While I was in the hospital, they increased the dose of Celexa a bit to 20mg and increased the Buspar to 30mg twice a day. That’s a high dose of Buspar, but I needed it, and it works for me.

Upon leaving the hospital, I learned a new word: frustrated. Once I realized what “frustrated” felt like, I realized that I felt this way much of the time. The doctor in partial did a novel thing, too. He listened to me, finally, for the first time. He put me on a brand new medication: Geodon. Geodon is an atypical antipsychotic that is used in bipolar and schizophrenia patients at higher doses, but in low doses it works well to curb frustration and ups and downs in people with ASDs. Although it raises my blood sugar (I’m type I diabetic, by the by), this medication has changed my life. I can stop and say, “I’m frustrated.” I can use my words instead of hurting myself to say that something is wrong. The dose has slowly gone up and up to get to a more therapeutic level, and we’re now settled on 60mg twice a day.

The price I pay for this even keeledness is sheer exhaustion. I sleep 12-15 hours a day. If I wake up at night after 10-11 hours of sleep, I’m like you might be on 4. I am exhausted. Luckily I don’t have to do much right now, but to do anything in the morning is awful. My mom has to drive to early doctors’ appointments because I’m just so tired. By early, I mean before noon. It’s very easy for me to get overly dependent on caffeine, too, because that keeps me going so well. It does help to eat regularly and enough, which I tend to let go by the wayside. Sticking to a minimum-acceptable calorie level gives me more energy than I would otherwise have, but it’s still tough not to turn to that one extra Diet Coke. Mom keeps me on the straight and narrow though; I get 2 12-packs a week. One caffeinated, one not, and that has to last me. That gives me 2 caffeinated beverages per day, which should be enough. It’s tough.

So that’s my story. I pay a price for the peace, but to me, it’s worth it. My life has been in turmoil for 21 years. Finally, for the first time, I am at peace. The difference between wanting to hit your head or tear at your skin and being able to say, “I’m really frustrated. I want to hurt.” is so important that I’ll deal with whatever I have to deal with to get the better side of that. Exhaustion or not, it’s worth it.

>Blessed x 10

>I thought I’d take the opportunity, it being Thanksgiving on this side of the pond and all, to tell you all some of the things that I’m thankful for. Maybe I’ll surprise you. Probably not. So, here we go, with 10 things to be thankful for:

1. Cats

2. Elsie, specifically

3. health insurance

4. my mom

5. Leigh

6. new friends and old friends

7. the OVR for my medical transcription courses

8. my good doctors

9. Diet Coke

10. texting

I can think of more things that I’m thankful for, too, but those are the first ten that came to mind. I’m not going to go trying to prioritize and make one more important than another, because that’s too hard. I couldn’t pick a “most important 10 things.” I went to Justin’s for Thanksgiving today and enjoyed spending time with his family. I got to meet his grandma’s five cats, each of whom was sweet as can be. Tomorrow, we’ll celebrate here with my sister, her fiance, Justin, and my parents. Later, after we’ve all eaten, my aunts and uncles will come over to spend time together since this is the first Thanksgiving without my grandma, and it’s hard on everyone. Even without her here, I’m thankful for the 21 years I got with my Daw. She was truly one of the most unique, special people I’ve ever known. I’m grateful to be her granddaughter.

This year has been a hard one. I’ve gone through so many changes, graduating from college and leaving what had become my “normal.” I’ve been through a hospitalization and another near one. I’ve struggled to get and stay healthy. I’ve dealt with uproar with my medications and adjusting and readjusting to changes in those. I started a new job and got used to going to work, only to end up out of work temporarily and not know what’s ahead. I’m facing a surgery that scaring me. Hard year or not, I’ve been so blessed by the good things in life. God and my family are taking care of me, and with both of them on my side, I know I’ll be okay.

>Big news!

>My Medicaid is open today! Praise the Lord!

I was about the lose my health insurance as of December 1st, and I need surgery, so I was really getting scared. But God came through and brought me health insurance! I’m okay!

Next order of prayer business, if you have a moment: I need to get through until January with no job. I was supposed to start a job in the beginning of December, but there’s no point in starting it just to have to take off because of the surgery for a few weeks. So, I’m not going to start in December. I’m going to wait until January. Mom is going to call the family friend I was going to work for and see if she’ll still have work for me in January. If not, I’ll have to go on a job search again. I hate job searching. I’m hoping and praying that the job is still available in the beginning of January. Would you hope and pray too, please?

>Ugh. Again.

>The anxiety monster is coming out again. I know, I know– again.

Here’s the problem. I’m having surgery on my cyst in a few weeks. (In case you want the update, here it is: It’s being slow to heal, so I’m back on antibiotics for another week. I go back to the surgeon for another check in 2 weeks and to schedule surgery.) I’m worried about the pain after the surgery. I’m also worried because I was originally supposed to transition from my photo lab job to new job right away. Well, it turned out that the manager didn’t have work for me until the beginning of the December. Now, with the surgery, I have to wait until after Christmas to work again. I’m worried about the money. I’m losing my health insurance as of December, and Medical Assistance hasn’t picked me up yet. I’m worried about needing surgery and not having health insurance. There’s a lot to worry about.

Every time I worry about one thing, the fact that Leigh is going to Mexico next year hooks onto that and I worry about that. I worry about that a lot. We’ll have email a few times a week, but it’ll be different. We won’t have texting, which I’ve gotten so used to, and I won’t see her very much. I just don’t like her being away. I even get weird when she’s home instead of at school. I just really don’t like change. Although, I need to share Leigh with all the Mexican orphans who need her too. I know that. I think I need to talk to my therapist about it, though, because it’s starting to get to be a lot anxiety to deal with. I’m starting to randomly cry a lot, which isn’t like me at all.

The good news is that, factually, things are actually in a pretty good situation for when Leigh leaves. I realized that I needed to make some other friends, so I started working on that over the summer. Unfortunately, I’m not the greatest friend maker, and I needed a little help. Leigh talked to two girls that she’s friends with and I knew but not extremely well but wouldn’t mind getting to know better. She asked if they might consider intentionally getting closer to me in the next months before she leaves. They could spend some time with the two of us and learn a little bit about how I work, what works, what doesn’t… some of the things Leigh has learned on her own. So, in the past few months, I’ve talked to Megan and Heather more. Megan is great at e-mailing with me and always, always remembers that a cat will solve almost anything. She’s Leigh’s suitemate, so I see her frequently enough when I go up there. I’m really comfortable around her. Heather has always let me just be myself and been more than okay with that, and she’s great about texting and helping me hang in there through anxious times. Nobody will ever be Leigh (we wouldn’t want another Leigh walking around here anyway…), but it’s good to have other friends and be comfortable with them.

So, like I said, things are looking good, objectively. It’s just somewhere in my mind that I’m still all in a panic about it. I’m going to go find my cat.

>Texting: AKA, meltdown avoidance

>I think whoever invented texting must have had me, or at least people like me, in mind. Oh, so you need a socially acceptable way to escape from a situation and connect to someone miles away from you? Here you go! Cumbersome though I thought it was at first, over the past year or so, I’ve really gotten used to it. It’s become one of my top few meltdown-avoidance tools, right up there with cats and Magic Words.

I text when I’m stressed and want out. When it’s loud, when I’m upset, when I’m overwhelmed, when I’m inevitably melting for whatever reason, I text. Usually, that person is Leigh. Sometimes I know she’s busy and try for someone else, but it helps if that person understands how I use texting. The point of the conversation, for the most part, is the conversation. Sometimes we talk about what’s upsetting me or how to fix whatever is going on, but the most important thing is that as long as I’m texting, I’m not losing it. I’m focusing on something else.

It happened in the car just tonight. Justin and I met up with two other couples to walk around downtown for Light Up Night. I’m still pretty sore from my cyst, and I wasn’t sure if I wanted to go. The jury’s still out, and probably forever will be so, on whether or not it was a good idea. I’m glad I got to see the fireworks with my new headphones, but I was sore and a little cranky the whole time, and my bandage worked its way off (I can’t fix it myself… need Mom for that). By the time we got into the car to leave and the parking garage wasn’t. going. anywhere., I started to get frustrated. “Leigh’s going to Mexico for a year” picked up on that little bit of frustration and soreness, and it was enough that I wanted to cry in the car. I was, objectively, perfectly fine, but I was starting to melt, and I knew it. I didn’t want to do that with Justin in the car…

So, I whipped out my phone. Leigh didn’t answer pretty quickly and I was getting tears in my eyes, so I saw if Emily was around, and she was watching a movie with friends and asked if I needed to text for a bit. We talked about autism, about dealing with people with autism, about blatantly autistic behaviors and dealing with those, we talked about cats, we talked about ice cream, about “Leigh’s going to Mexico for a year, about the fact that I don’t have to worry about that yet, we talked about are you sure I don’t have to worry about that yet?, and, finally, I made it home in one piece. Sometimes, even just holding my phone calms me down.

Other times that I’ve gotten out of meltdowns by texting include:
Disney World’s fireworks
the mall
many, many restaurants
city crowds
storms at home
grocery store with Mom
sitting 2 feet away from Leigh but not having any words to verbally tell her what’s wrong

My phone is a beautiful thing. Sometimes, I probably seem rude by texting when I should be “engaged,” but you know… I’ve thought about that. I’m not engaged. At all. I’m barely holding it together. And if my options include 1. text or 2. meltdown… I’m going to pick appearing rude to my family or close friends over engagement. Anyone who matters, also understands (or will, now that I’ve thought this through and realize that I should explain it to them).

And yes, I hear you bugging me about those fireworks. You want to know how they went. Well, I held my phone the entire time, but other than that, they were absolutely beautiful. I could see some of those again.

>I haven’t forgotten about you…

>I’ll post within the next few days. This whole pain thing is wearing me down. But I haven’t forgotten about you, I promise. I’ll be back.

>A wonderful, wonderful weekend

>I went to hang out with Leigh this weekend at school. After the craziness that happened a few weeks ago, I was really missing her. She’s a constant source of calm in the midst of any storm. It was so, so good just to hang out with her for the weekend. I can’t think of anything in the world I’d rather have done.

My weekend was slightly clouded over by some pain. Warning that if you get grossed out extremely easily, you may not want to read this paragraph. I’ve always had to sit “just so” or I’d get a shooting pain in my tailbone. Well, that little spot got bigger and swollen and super painful. I went to the ER Thursday night, and it turned out to be a pilonidal cyst that had to be drained. That would have been fine (I just had to sit on a cushion for a few days and take Tylenol). I was getting better on Friday and for part of Saturday, but by Sunday I knew something was wrong. My marble-sized lump was the size of a golf ball and extremely painful. I went to the doctor today and got sent immediately to the surgeon. Only stop to pick up Percocet and antibiotics. The surgeon drained the cyst, which hurt like HECK this time (luckily, my mom stayed with me and that helped) and will have to be removed in a not-so-little surgery in a few weeks. I’m not thrilled, at all. I’m scared.

Anyway, aside from that little interlude, do you want to know what I did on my wonderful weekend with Leigh? I knew you did. I think I can remember it all! Well, when I got there, she was in class for a few hours and I hadn’t slept due to the ER trip the night before, so I collapsed in her bed and slept. I got up and we went to the music store in town where the owner keeps three cats. I love these cats and have visited them many times in the past couple of years. We played with and pet the cats. Chaos, the big, fluffy kitty, was so thrilled to see me. I love that he still remembers me. Then we got Chinese food (mmm, beef and broccoli!) and took that back to the room to eat. Leigh had to go to a Young Life meeting, so I went to find us Dove Bars (the ice cream ones, since Leigh had never had one and they’re heavenly) and hung out with another friend on campus. After that, we met up for the annual big dance show. The show was great. I had never gotten to go in all my years at school because I was so worn out from classes and being social all week that I couldn’t handle doing things on weekends too… it felt really good to be able to go this year.

Saturday, I woke up early (8AM) because of the pain and stayed up. I messed around on my computer while I waited for everyone else to wake up. Then, we got ready and went out to a local Mexican restaurant with a mutual friend, Heather. She’s the sweetest girl, and we had so much fun talking and laughing and eating good food. We stopped at Heather’s on the way back to campus to see her two dogs. They’re both chihuahuas. One is 15 lbs and one is a little, tiny, 3-lb puppy. After hanging out with Heather, we went to Leigh’s friend Lee’s (oh, yeah, that’s fun) senior saxophone recital. He was really good. I only made it through the first half with the sitting, but what I saw was great. We just kind of hung around for the rest of Saturday. We found out that our good friend Jen got engaged that day, so that was exciting news! We planned to make her a poster the next day. We ran out to Walmart to get me Tylenol and Tylenol PM then, because I wasn’t sleeping very well. I finally slept through the night that night.

I even woke up late the next morning, at 11:30. We went to Walmart again to get supplies for Jen’s engagement poster. We made it about the TV show The Office and analogies, since Jen loves The Office and English. Leigh did most of the poster making while I laid on the couch. I slept on and off all afternoon, worn out from hurting for the past ten days. We went to church and I got up and down the whole time, and not always with the rest of the congregation. I love church, especially that church. After church, we went to Jen’s to bring her poster and congratulate her. I’m SO excited about her engagement! Then, we stopped at Sheetz for a milkeshake to split (mmm, milkshake!).

We got back and I was really, really hurting. Even laying down wasn’t relieving it anymore. I finally broke down and cried. Worried that I wouldn’t be able to drive the next morning if I waited, I drove home at 10:30PM that night. It’s just an hour’s drive, but it was super dark. I was up most of the night again, crying, until my mom came and laid down with me. Given that that wouldn’t do anything for the pain, it makes me think that I was as upset as I was hurting. Moms can fix everything, though, don’t you know?

So, that was my wonderful weekend, pain aside. I couldn’t have asked for a better time or a better friend. I wasn’t positive I was going to go, but I’m so glad I did. It even included cats!

>How to (narrowly) avoid a melt down

>Some people think noon is pretty important. We base our day on “before noon” (aka morning) and “afternoon.” We eat at noon. Noon is a big deal. Not in my world. In my world, it’s all about the mail.

My day hinges upon the mail coming. I depend on the mail. I need the mail. It’s an essential part of my routine each day. I wait for it to come starting at about 2PM, waiting by the front window, waiting, waiting, waiting… and inevitably, sometime before 4PM each day, the mail comes! I run out in my barefeet (unless there is snow on the ground) to get the mail the second the mail truck goes on to the next house, so I can avoid small talk with the mailman. There’s never anything for me. My grandmother, who died in May, easily gets ten times more mail than I do. But I’m the first one to see what comes. I get to see who got what. I get to see if maybe, just maybe, I got something. I need the mail.

Yesterday, I was anxious for the mail to come. It was 4PM and it hadn’t come yet. I thought I’d check out if the mail truck was down the street, so I put on some shoes and decided to take the trash cans back to where they belong after trash day. I didn’t hear the mail truck. This was getting ridiculous, I thought. Then it occured to me. Veterans Day. No mail. I felt the anxiety building. No mail on Veterans Day. The mail isn’t going to come. I headed back to the house, making my hands into fists. It’s not coming. The mail isn’t coming today, because it’s Veterans Day. I almost started to cry. Why do we have to celebrate holidays by not having mail? That’s a ridiculous way to celebrate. We need the mail. I need the mail.

Elsie greeted me with a paw and a squeak as I come back through the door. She was concerned that I was crying, sweet kitty that she is. She doesn’t like when I cry. I knew that Leigh was busy, but I knew she’d tell me to find cats, so I picked Elsie up and fussed over her. I took her into the kitchen and give her a treat, just because I can. She loves her treats. I started to feel a little better. Elsie

In the time I spent with Elsie, something miraculous happened. UPS came and brought my noise cancelling headphones. You see, my boyfriend (yes, folks, it’s official) and I are going to Light Up Night next week and there will be fireworks (and you know how I feel about fireworks: not good). The ‘works themselve are beautiful; it’s the noise that gets me. As an early birthday gift, Justin got me “extreme isolation” noise cancelling headphones so that he and I can enjoy the fireworks together. I know, I know, I found a good one, eh? Headphones plus earplugs, and I should be able to watch the fireworks without tears for the first time in my life!

Anyway, first good thing that happened was that my headphones came, and they work wonderfully. They block 25 decibels, and my earplugs block 29, so between the two fireworks should be brought from approximately 110 decibels to approximately 60, or the level of normal conversation. That’s about what I can handle without getting agitated, so, we should be in business!

Next, my mom said that she would stop at the video vending machine outside of the grocery store and look for UP, the movie (I clarify because people kept asking “up what?”). Well, instead of renting it, Mom bought it! We never, ever buy movies, but now we own UP! I was so excited to watch it, and watch it we did!

After the distractions ended, I did start to get anxious again and talked to my friend Emily online. She understood that I was uncomfortable about the mail and didn’t tell me that I was being stupid or anything like that, like it might be easy to do. I understand that it’s just a small change of routine, but it’s so hard to deal with. I like my days to be the same. Emily and I talked for a little bit, and then I went to bed.

Luckily, I woke up to a new day… a day with mail! Today will be a good day. I’ll work on my medical transcription, work on my book, and this evening, I’m going to the mall with Justin and one of his MHMR clients. I’m excited to meet the client, as I’m thinking this could be a future career for me. I still don’t like unexpected no-mail days, but maybe they’re not all bad. At least they’re over pretty quickly and onto something else! It will pass. It always passes.

>Why my cat has autism

>

I had to get up at the crack of dawn this morning (7am) to take Elsie to the vet with my mom. She has to get steroid shots every few weeks to keep her muscle-wasting, which causes her throwing up, under control. So off to the vet we went. On this brief trip to the vet, I discovered something huge. My cat is autistic. It’s no wonder we get along so well.

It came to me when we were in the car. Elsie is afraid of the cat carrier (it took her to the vet once, after all), so we take her in her harness and pretty pink leash. She didn’t want to be held to get the harness on, so I gave her a treat right after she got it on and that made her feel better. I planned to give her another treat in the car, to let her know what a good girl she was being, but… I couldn’t engage her. She was so involved in looking out the windows that I couldn’t engage her, couldn’t get her eye contact, even to give her a treat. This has happened when I took her outside on her harness and leash, too. You can’t get her eyes to look at your eyes. She’s in her own kitty world. The lack of engagement and lack of eye contact is what made me realize wow, Elsie is acting like she has autism.

We got to the vet and she absolutely hated the noise of the cars outside. Kitties have super-sensitive hearing, of course, and our vet is on a busy street. The cars passing outside were so distracting to her that she didn’t even feel it when she got the shot. Hmm, sensory integration issues?

Then there’s the issue of her food. Elsie is o.b.s.e.s.s.e.d. with eating. Obsessed. It’s all she thinks about, I swear. She starts meowing for dinner around 2:30 in the afternoon, and she doesn’t eat until 5! She’ll do anything to get you to feed her. That’s her number one goal. Elsie loves food more than I love cats, I think!

Did you ever think a cat could have echolalia? Mine does! Sometimes she has conversations with you, but other times, she just repeats what you say (by meowing in the same tone that you speak to her in). “Elsie?” “Me-ow?” “What’s up kitty?” “Me-ow meow.” You get the idea. She’s got it down pat. Kitty echolalia.

There’s a book out there called All Cats Have Asperger’s Syndrome. My first diagnosis was Asperger’s, and when I got my diagnosis, I got this book. My mom said that the author must have known that I was out there somewhere. If you know someone with Asperger’s who loves cats, this book is adorable. And so true!

Elsie recovered just fine from the shot she never felt

>About blogging

>It took me a while to get this up here (it often takes me a while to get anything done… I get distracted rather easily), but one of my readers gave me this blog award. I thought it was pretty and that I would put it up, even if I don’t read enough other people’s blogs to know who to pass it onto. I guess I’m kind of messing up the game, but that’s okay. I never did play games the right way. Why should I change now?

I’ve come to really, really like blogging. It gives me a chance to put things in writing before I have to talk about them, which makes them easier to talk about. It gives me a way to say, “well, did you read my blog post?” instead of having to tell the same story or explain the same thing to multiple people, since I wear out really quickly from telling and explaining. It allows people to know what’s going on in my life. It’s an outlet for when I need to write but don’t have a place or purpose for writing. And, I hope, it has allowed you to learn a little bit of what it’s like to live with autism. That’s my goal. That’s why I started this thing.

So thank you, Annicles, for the award, and thank you everyone, for being along for the ride with me. Now get those seatbelts back on! We’re not finished yet!