What Price Sleep?

Terrific. My last few days of being able to sleep in before I start my new job, & I'm up at 6am. Actually, I woke up around 4:45, tossed & turned until 5:30, then said, "the hell with it, I'm hungry" & got up.

Welcome to the wonderful world of GAD, where insomnia rules...

Although I have to admit things aren't as bad for me as they were a few months ago. Back in April/May my anxiety was so bad that I would just lie awake until 3:30am. It didn't matter how physically exhausted I was. As soon as my head would hit the pillow, I'd be wide awake.

But things are slightly better now. In May I participated in a study at a major university which studied the effects of a drug called riluzole on treating GAD. Riluzole is normally used for treating patients with ALS (Lou Gehrig's disease). It works by inhibiting a brain chemical called glutamate. The brain makes glutamate when you're anxious or nervous. However, too much glutamate can literally excite your brain cells to death. Therefore, when a person is under a chronically stressful situation, it can literally cause brain damage.

The study required me to be on riluzole for 8 weeks, during which time my symptoms improved. Riluzole didn't make me well, but it made me better. In return for my participation in the study I've been entitled to 3 months of follow-up treatment. I continued to take riluzole after completing the study. Unfortunately, 3 weeks into the follow-up phase I started to have an adverse reaction to the drug. One of riluzole's potentially dangerous side effects is that it can cause liver damage. I had to have blood work done routinely while I was participating in the study. One day my blood work came back & my liver enzymes were up. That's a sign of impending liver damage, so I had to stop taking the drug.

So then the question was which drug should I start on now that I can't take riluzole? I absolutely refused to take an SSRI (more on that in another post), so that sort of limited my options. My doctor wanted me to go on Wellbutrin, but after I did some research on Wellbutrin I wanted to ask my doctor what kind of drugs he was using. Wellbutrin is a drug commonly used to treat depression. I'm dysthymic, so that was logical. It's also common for some antidepressants to be used as anti-anxiety medication, so that was logical, too. The problem was that 2 of the common side effects of Wellbutrin are anxiety and insomnia. As I said to my doctor, "Why don't we just find an alcoholic with a head cold and give them Nyquil?"

A side rant here: If you're receiving medical treatment, whether it's for mental illness or anything else, it is CRITICAL that you take responsibility for your own treatment!! NEVER just blindly accept whatever your doctor tells you! While it's true that there are many doctors out there who are just plain idiots, even the gifted and competent doctors can make mistakes. And even if they're not prone to making mistakes, YOU know your own body better than any doctor does. A doctor can prescribe treatment, but you're the one who has to undergo the treatment. If it doesn't make sense or it isn't working for you, SPEAK UP!! Again, you MUST take responsibility for your own treatment. If your doctor has a problem with that, find another doctor. You're the one paying the medical bills--that means your doctor works for YOU, not the other way around. If your doctor seems threatened by you taking an active role in your treatment, take your business (and your insurance money) elsewhere.

Having said all this, I do need to say that my doctor is not an idiot. I like him, and there aren't too many people in the medical profession about whom I can honestly say that. There are many reasons why I like him, but the biggest reason is that he is not afraid to be challenged. He not only accepts my taking an active role in my treatment, he welcomes it.

Anyway, back to my treatment. We ended up deciding that I would go on Effexor. DISASTER!!! It made me so loopy that I couldn't function properly. I was a zombie. I couldn't walk a straight line. It was like I was drunk. And it made me a weepy mess. So as I sat in the clinic blubbering to my doctor, I asked if there were any other drugs out there that inhibited glutamate. He said that there were, & to make a long story short we decided on Lamictal. Lamictal is typically used to treat epilepsy and is currently being tested on patients with bi-polar depression. However, since it's a glutamate inhibitor and since I responded to riluzole, which is also a glutamate inhibitor, we both felt this would be a good way to go.

I've been on Lamictal for almost 3 weeks (25 mg/day), and it's working well. I'm not completely asymptomatic, but I'm better than I was while on riluzole, and a hell of a lot better than I was when I first started the study.

As I said before, I start my new job on Monday. I'm going to be a receptionist at a VERY prestigious financial firm. It's a temp to perm job, but I already know I don't want it permanently because the hours are 8-6. That's a 10-hour day, folks. That's not a job, that's jail. I'm a World Trade Center survivor. Life is too short to slave it away at a job. So I'm going to try & ride out this job till January. If I don't have something else lined up by then, I'll go back to the tax firm where I was working up until yesterday.

8-6...this means I'm going to have to get up at the crack of ass every morning. Thank God for Dave Price. I have a feeling he'll be the only good thing about this whole job aside from the paycheck. (For those who don't know, Dave Price is the weather guy for the graveyard shift newscast on Channel 2. He's funny, he's smart, and he's a cutie patootie. ;) )

Actually, that last take on the job isn't entirely accurate. My boss seems cool, the work isn't going to be that difficult (all I'll be doing is answering the phone), and it's a friendly environment from what I've been told. I'm just not liking the thought of not seeing daylght for the next few months.

I think I'm going to try to go back to sleep now...
- posted by Pat @ 9:03 AM | 0 comments

 
An Open Letter To Brian McNaught

Dear Brian,

More than a decade ago, you graced my humble little college campus with the honor of your presence and moved me profoundly with your eloquence. That night I purchased your book “On Being Gay”, the first chapter of which was an open letter to Anita Bryant. The letter was a pleading for understanding to someone who was at best grossly misinformed about homosexuality and at worst hateful and hostile to the GLB community. You tried diligently to show that by being gay, you were not someone to fear; that by being human, you had more similarities with Ms. Bryant than differences. You tried (in vain, I suspect) to appeal to her sense of empathy by describing what it was like to grow up with what you thought was a horrible secret inside of you, to wonder how your friends and family would react if they knew that secret, and ultimately to hate yourself so much because of that secret that you tried to quash your pain by quaffing a bottle of paint thinner.

Like you, I have a secret. Like you, I now wonder how my friends and co-workers would react if they knew that secret. And like you, I have flirted with suicide. Unlike you, I didn’t end up in the hospital. I merely ended up with the equivalent of a paper cut on my left wrist when I was 12. Stupid me, it never occurred to me that slitting my wrists would hurt. Of course, I was in so much emotional pain at that point in my life that I didn’t think I was capable of feeling physical pain. And unlike you, I write my open letter to you not because I think you are misinformed or hostile about my kind of secret, but because the thoughts I am going to share in this blog are painful and difficult for me, and it helps me to imagine that I am writing to an understanding soul. I have no idea what your thoughts are on the matter, but I suspect that you would be very understanding about it. I have often turned to your books when I have been upset or unhappy because I find your words comforting.

And unlike you, my secret has nothing to do with my sexual orientation.

For a very long time, I have known that I was different from other people. I wasn’t sure why. But I didn’t seem to make friends or keep them as easily as others. I was an academic overachiever who constantly worried about her grades. My self-esteem revolved around my GPA. When I was in junior high, the other kids hated me and openly taunted me. Once I got into high school, they left me alone. That was the good news. The bad news was they left me alone. They just didn’t want to be around me. I’m highly intelligent with a strong work ethic, yet I can’t seem to hold down a job for very long. I’ve never had a real boyfriend, unless you count the abusive asshole I dated for 5 months when I was in college. I’ve constantly been accused of having an attitude problem for no real reason that I could perceive.

I’ve also felt really bad for a long time. And until recently, I blamed feeling bad on all these other things listed above. I also blamed it on other things that have happened in my life, things that I’ll discuss in later entries. But within the past year, I’ve come to realize that I often feel bad even when bad things aren’t happening. And that I overreact to bad things even when they’re minor. When I got to the point where I couldn’t sleep at night because I was worrying so much, I realized that something wasn’t right. Or maybe I knew all along that something wasn’t right, but was now able to admit it to myself. And by admitting it, I was able to bring my horrible secret out into the open and try to do something about it.

My secret? I am mentally ill. I have a condition known as Generalized Anxiety Disorder (GAD). Basically, that means I spend an inordinate amount of time worrying about stuff even when there’s seemingly “nothing” to worry about.

Here’s how it works: Let’s say you’re confronted with a crisis situation—you get a phone call saying that your mother has been rushed to the hospital with chest pains, you hear your partner’s been in a car accident, whatever. When you’re hit with that crisis, your brain activates the sympathetic nervous system, which is kind of like a “crisis switch” in your head. Flipping this “crisis switch” causes you to exhibit certain physical symptoms. Your heart rate increases. Your mouth goes dry. You get “butterflies” in your stomach. You may need to urinate more frequently. (Ever notice how animals tend to pee when they’re scared about something?) You might feel as though you’re on “hyper-alert”. Eventually the crisis passes—your mother just had heartburn, your partner’s accident was just a fender bender, and your physical symptoms subside and you return to your normal self.

I have GAD, which means that my “crisis switch” doesn’t work the way it’s supposed to. For one thing, it’s got a hair trigger. Things that normally aren’t cause for concern to most people can cause me to stress big time. For example, let’s say that my boss calls me into his office: “Can you come here, please? I need to talk to you.” The first thing that will hit my mind is: “OMG, I’m going to get fired! What did I do wrong?” When that happens, I am now at the point where I can say to myself, “Calm down, it’s just your anxiety. He probably wants to ask you about the phone message you took for him this morning.” But by then it’s too late. The switch has been flipped.

The second problem with my crisis switch is that once it’s on, it has a hard time shutting off. Think about the way you feel when you’re in “crisis mode” and you’re feeling the symptoms I’ve described above. I feel that way at least 60% of the time.

Researchers are still trying to figure out what causes people to have GAD, but it’s believed that the cause is a combination of biological and environmental factors. What we do know is that nearly everyone with GAD has another mood disorder to accompany it—Social Anxiety Disorder, agoraphobia (fear of public places), depression, panic attacks, and/or Post Traumatic Stress Disorder. I’m lucky. Out of all of those, I only deal with mild depression. There are several different types of depression. The type I have is called dysthymia. Dysthymic people are able to function normally, but we’re often thought of as unhappy, negative people. I’m not suicidal, I’m just not the happiest, perkiest person in the world.

GAD is generally treated with a combination of drugs and “talk” therapy. However, because we still don’t know the cause of GAD, we’re still trying to figure out how to treat it. Treatment is a long, arduous, frustrating process of trying different drugs until you find one that works and whose side effects you can tolerate. I’ve been in treatment since May 2003 and yesterday I started on my third drug.

There’s another reason why I address this open letter to you. There are a lot of parallels between homosexuality and mental illness. (And NO, I am not suggesting that homosexuality IS a mental illness! Keep reading.) As a gay man, you probably understand a lot about stigma. About experiencing scorn and derision from family, friends, and co-workers because of something you didn't choose to be. About how pathetically little some people understand about being gay. And about how some people just refuse to understand. I’ll bet that numerous times you’ve had the experience of hearing people make “fag” jokes in your presence, not realizing that you were gay.

Right now, I’m very much in the closet with my condition. I told one friend shortly after I was initially diagnosed and I’ve regretted it ever since. Now whenever I’m in a bad mood or I get angry with him he throws it back in my face—“Sounds like your anxiety is acting up again.” I often heard my co-workers in higher education make cracks about students with psychological problems—“Psycho”, “wack job”, “Sybil”, etc. (And these were people with COUNSELING degrees!! People who should have known better!) Just as many people wrongly assume that all homosexuals are pedophiles, there are many who assume that those who are mentally ill are out-of-control maniacs who are a danger to themselves and others and who need to be locked away in a mental ward. You’re not a pedophile, and I’m not a threat to anyone, including myself. I just worry a lot and spend an inordinate amount of time hating myself for being such a failure.

How many times have your gay brothers and sisters heard the exasperated cry “Why can’t you just be straight?” from “friends” and family members? I wish I had a nickel for every time someone has said to me: “Smile!” “Cheer up!” “Relax!” “Don’t worry!” “Stop being so sensitive!” Oh God, if ONLY it were that easy! No one would ever say to a paraplegic, “Your problem is that you need to get out of that chair and walk.” Yet it’s considered perfectly acceptable to tell someone who’s depressed or anxious that they need to “snap out of it”. It doesn’t work that way.

I’m hoping to use this blog as a means of chronicling my struggle with GAD. I also hope that others who have it will find it and read it and know that they are not alone. Brian, I have no idea whether you will ever see what I have written here. But just imagining you reading these words has helped me to write them. Thank you for allowing me to use you as a literary device.

Sincerely,

Jain Dough (Of course it’s a pseudonym! I’m still in the closet, remember? :) )

- posted by Pat @ 8:29 PM | 1 comments