Saturday, November 28, 2009

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.


  1. Personally, I think ASD is called a spectrum disorder for a reason, it's so many shades of grey, no two people diagnosed with it are going to be the same so why should their treatments be the same? If it works for you, great, but that doesn't mean it'll work for the next person and that is where the difficulty lies in treatment. Doctors so often want a one size fits all solution and with ASD it's just never going to be that way.

    That combined with the changes that children go through growing up means the goal posts are constantly shifting and we as parents have to move with it and struggle to stay ahead of the game. My girls needed the GFCF diet when they were small but now can tolerate the gluten and casein proteins which is just brilliant as the diet is so socially excluding. Bear still has her casein intake monitored and these days we also have to watch her phenol and amine intake...It's like standing in quick sand - you have to keep moving or you'll sink.

  2. Hi Lydia, I love your blog. You express yourself so well. I have a son on the spectrum and there is not a lot of material out there from adults on the spectrum. You help me understand my son better by sharing your experience.

    I never thought that the reason why my son might ask me the same questions over and over is to make sure that something is still true. And when I think about it, it makes a lot of sense. He's not just asking me over and over with disregard to the answer I am giving, my answer is important to him and he's waiting for me to confirm something that matters a lot to him. It's reassuring to him.

    Lydia, my son is almost 7 years old. We had a long drive home from Thanksgiving. The whole ride back, he must have asked hundreds of times "Is this a short ride?" sometimes accompanied by "How many more minutes? How many more seconds?" How would you handle this? We answered, we reasoned, we stalled, we answered. We set up the gps to show the screen as it counted down the miles to our destination and that helped. When you find yourself asking the same questions over and over, what helps you the most?

    I loved your list. Wishing you well and keep writing! Gimky

  3. I think setting up the GPS with the countdown was a great idea. Anything visual is a great help. So too is anything constantly updated, like the countdown. I love when we drive with Leigh's for that reason, because I can always look at it. One other thing I might have done was given him a phrase to refer back to. When you show him the GPS tell him, "And when it reaches 0, then the ride will be over and we'll be home." Every time he asked about how long the ride was, again show him the countdown and say, "When it reaches 0, the ride will be over and we'll be home." Pretty soon, he'll start answering himself, and calming his own anxiety. At least, it would work for me :) And that's the ultimate goal- to be able to calm my own anxiety. So you're not trying to get him to stop asking the question- he's going to ask and that can't be stopped- you're trying to get him to be able to answer himself and therefore calm himself. Does that make sense? It makes sense in my head!

  4. As someone who is struggling witrh the medication or not question your post was so meaningful to me. "If this makes me feel more even keeled I will deal with whatever I have to get to the other side of it." I will remember that - thanks.

  5. One other thing I would add, as the parent of girls with very limited communication skills, is to never ever rephrase things. Say it the same each time because different words could mean something different is happening. (feel free to correct me Lyd!)

  6. Hi Lydia, thank you so much for explaining it. It makes sense! You are such an amazing resource. There are a lot of 'experts' out there, but very few people I can ask firsthand about these kinds of things. As my son gets older, I find myself wanting more and more to know about his challenges from the perspective of someone who has been there and truly gets it. We're so lucky for you.

    I appreciate your input, too, Amanda. Thank you!


  7. Very interesting discussion glad that I came across such informative post. Keep up the good work friend. keep it up... good post.