And then there were meds

I last wrote about this in 2012 when the very expensive sleep study I underwent showed “nothing remarkable.” That was pretty devastating to me, and I just gave up hope at that point. I couldn’t afford another sleep study, and was afraid it would come to the same conclusion anyway. And I wrongly thought that was the only avenue for help for me.

Nearly two years later, I was at dinner at CodeMash and talking about the symptoms that have plagued me since I was a kid. My friend Zach (@theotherzach) gave me a little quiz about what it was like for me in school. I daydreamed a fair bit in class, fell asleep, tested very high, but always performed far worse than my test scores indicated I was capable of. He told me to read “Driven to Distraction” ASAP and felt that I would find myself in that book. Another of my symptoms is that I fall asleep about 10 minutes into reading a book. It seems to have gotten worse over the years. So I barely read more than social media snippets these days. I put it on my list and looked it up to see if it had a version on Audible.com. I find that I can only manage to consume book-length information by listening to an audio version while also doing something else like driving, mowing the lawn, shoveling the driveway or cleaning the house. Without another activity to occupy my body, I will fall asleep about 10 minutes in, just like reading. At that time, I couldn’t find it and forgot about it for a few months. I think I ran across a reference to it somewhere and gave my search another try.

driven_to_distractionThis time I found it. There was a 13+ hour unabridged version and a something like 1.5 hour abridged version. I got the unabridged version. Glad I did. I did find a lot of myself in that book. I was the daydreaming girl in the back of the class who occupied my mind with other things and couldn’t focus on tasks in class. I was just smart enough to compensate. It was easy enough in elementary school. As I got older, it got harder and I focused most of my energy on cleverly skipping class and missing as many days of school as I could without having to make them up in the summer. I finished high school with around a 2.75 average and headed to college. I tried harder and did better there, but dropped out after changing majors and schools a few times and never looked back.

After listening to that book, I felt I likely had ADD [Note: Apparently ADHD is the official term for all things under that umbrella right now. I don’t like it since the H stands for Hyperactive, which I’ve never been, so I just use ADD]. Narcolepsy had been ruled out by the sleep study, so that’s what it had to be. I also watched Greg Baugues’ (@greggyb) excellent talk on Devs and Depression from Steel City Ruby. That really resonated with me. The chronic procrastination, things starting out well at a job, but ending the same way after a year or so… Anyway, I got health insurance for the first time in a couple years and made an appointment with my GP for the day after it took effect. He updated my shots and did a wellness check for me, but said that he couldn’t test or diagnose me for ADD, and that I’d need to see a psychiatrist for that. Great… since my insurance does not cover specialists.

I looked online and found a psychiatrist that specializes in ADHD and adult anxiety disorders in my area. Made an appointment for the following week. One of the things I liked about him is that he prioritizes new patients so they’re not stuck waiting without help for months after they finally decide they need help.

I made it to my appointment. I struggled to make it on time, as I pretty much always do. Thought I’d be a half hour early, but it was only 5 minutes. Went in and he asked me some questions about my past. I told him about reading Driven to Distraction and the parts that resonated with me. But I also told him about what brought me to the sleep study in 2012 and how surprised I was by the results I was given. He said that he’d like to see my actual results as the interpretation of sleep studies can be quite subjective. After awhile, he said he could set me up with a study at a place he felt did a better job, but based on my symptoms alone he felt fairly sure it was narcolepsy. He continued on to say that he has seen many ADHD patients, but he has never encountered somebody who had the falling asleep type symptoms to the extreme that I did. And I had to fight back tears.

I felt vindicated. Finally, a doctor understood me and was willing to help me. He said that there was a newer drug he wanted to try me on that was only approved for narcolepsy, but that had also been known to treat ADD symptoms for some people. He felt it would help treat my primary problem (narcolepsy), and also help with my ADD symptoms. I wasn’t sure how to react. Inside, I was doing a dance of joy. FINALLY!!!! I was afraid that I’d somehow find my way out of that office with just another bill and no help, though. I did my best to play it cool. And I left the office with a script and a coupon for a free month of the medication. He also warned me that it’s prohibitively expensive otherwise and could run upwards of $500/month, because of course it is. I put that out of my mind for the time being and just focused on seeing if it helped or not.

I filled my script and took 1/4 dose right then. I think I felt it take effect about 20 minutes later. I just felt kinda better. Lighter. Maybe even a little lightheaded. Went home and did some work. And I kept at it until the evening. I was worried about getting to sleep, because difficulty falling asleep was one of the side effects. No trouble there. Fell asleep fast and got about 8 hours in. Better than usual! Felt awesome in the morning. I woke up at 6am, took half a pill and was working a half hour later. Completely unheard of for me. I usually have trouble getting up in the morning, and then just mess around till after lunch without doing much. Then I’d feel sleepy after lunch and doze a bit until my boyfriend got off work and do something with him. Days just slipped by.

But this first day on my new meds, I was a whole different me. I’d think of something on my to-do list, and then I would just DO IT. Without hesitation, without distracting myself with a bunch of other stuff… I would just DO IT. And that was amazing. I was able to stay heads down in a task from start to finish. And I just kept doing that all day long. Just ticking boxes off my Wunderlist… It felt great. And when it was time to go to sleep, I felt tired and ready for bed. And I slept.

Unfortunately, I was so focused on what I was doing that I forgot to eat dinner. Appetite suppression is one of the side effects, and I didn’t feel hungry or like I needed to eat. Normally, that was an easy distraction for me, and I’d snack a lot throughout the day. I didn’t eat breakfast in the morning, either. Just noticed I had a headache. And I freaked out about that. Thought it was a side-effect and was afraid I’d have to be all Flowers for Algernon after just one great day on the meds. But I did eat some food eventually and started to feel better. But the headache persisted. And then I realized I was going through caffeine withdrawal.

Before my appointment, I had been self-medicating with caffeine as much as I could. Took in anywhere from 200mg-400mg a day. I keep track of my sleep with the Jawbone UP, and was keeping track of my caffeine intake with the UP Coffee app on my iPhone. It didn’t matter if I had my caffeine in the morning or in the evening, my sleep was still pretty good. I was getting 7+ hours a night. But I was told not to drink caffeine or alcohol with the medication, so I stopped cold turkey after my appointment. Yes, good old caffeine withdrawal. Maybe the last time for that one… But it made for a very unpleasant day.

The third day was far better. Felt like I got through withdrawal by that morning for the most part, and I had been eating decent and regular meals. The headache went away, and my ability to focus and accomplish things returned. I was overjoyed to realize that the awful I felt the previous day was just due to a lack of food and withdrawal, and not side effects of the medication. That afternoon, I even had an amazing moment where I realized I was sitting outside on the patio of a loud bar/restaurant, coworking with friends who were talking loudly right next to me while a football game blared near my head, and yet I was able to write an email and do some work with little trouble. Again, that is completely unheard of for me. Pre-meds me would’ve been completely distracted by all the noise the whole time and struggling to drown it out with my headphones up as high as I could manage them. I might’ve even fallen asleep due to all the activity around me. But there I was without my headphones on and just able to focus on what I wanted to rather than everything all at once all the time.

Tomorrow marks my first week on meds, and I’m so grateful to be starting this new chapter of my life. Not that I haven’t been distracted at all this week, or that I’ve done what I should be doing every waking moment. I haven’t. I’m still me and still human. But I have abilities that I did not have before I started the medication. And I spent a lot of my life feeling damaged for things that were beyond my control. Falling asleep at inappropriate times can be pretty embarrassing and humiliating. Not being able to focus on learning or doing things for work has definitely held me back in both school and my career. I had so many people tell me that I just needed to try harder or buckle down. But that wasn’t the case. I couldn’t. And for a long time I believed that I probably could if I really wanted to. But I proved myself wrong on that time after time as well.

I finally have the tools I need to be successful. Now I’m working on learning how to use those tools. Some days will be better than others, but I’m excited about this next phase. And I suppose part of my point here is not to let a sleep study or just one doctor or just one person tell you they can’t help you or that there’s nothing wrong with you when you really feel they’re wrong. Keep looking and keep asking. Don’t give up on yourself. You deserve to live the best life you can. <3 <3 <3

The curious habit of my girl, Harold

Harold on my head

Early morning bird-head.

I have this 16 year old female blue crown conure (a small parrot) named Harold. My friend Joanna who loaned me the $400 to buy her when she was 10 weeks old was the one who named her. This breed, like most in the parrot kingdom, is not sexually dimorphic (both sexes look the same), so naming them is just making a guess anyway. So for the first 8 years of Harold’s life, she got male pronouns. And then, to my great surprise, she laid her first clutch of eggs. It took awhile, but I figured the least I could do would be to give her proper female pronouns. And sometimes I call her by her full name, Haroldina. That’s usually reserved for when she’s being a jerk.

She is my only pet at this point, and will likely be my last. Statistically, she’s probably at mid-life, so I’ll likely have her a good while longer yet. She’s been with me through a lot, and like me, she did not emerge completely unscathed. She has been a habitual feather plucker only slightly longer than she has been known to be a “she.” It’s a nasty habit for birds, and a product of captivity. They simply do not do that at all in the wild. If a parrot’s missing feathers in the wild, it’s likely due to a fight, or a quarrel with their mate. But Harold does it, and rather than make her even more miserable by attempting to discourage the habit, I just let her be. We all have our vices, after all.

After Harold first laid eggs, it was several years after that before she laid more. I hoped she was only going to do it that once, let me know she was a girl, and be done with it. Since she’s the only bird, the eggs are unfertilized (like the chicken’s eggs you eat in your omelets). The process is hard on her little body, so it’s really best for her not to lay eggs, especially being older.

But she has laid eggs again several times in the past few years. And when she starts nesting and getting ready for eggs, it correlates more with times of massive change in my life than it does with the seasons. The typical time for birds to nest and lay eggs is in the spring. The time of sunlight gets longer, and that lets them know it’s time to raise some babies. Not Harold… She has laid eggs in the fall, middle of winter and now in summertime.

In September 2011, I had just broken up with my boyfriend and moved out of his house, my time trying to be a programmer had come to an end and I was staying with my parents briefly until the house I’m living in now was ready for me to move into. Harold was acting so strange the whole time she was at my parents’ house. I forgot that what she was doing was nesting. She tore up the newspapers at the bottom of her cage, and would hide under the papers. She seemed lethargic, and also took to making an awful sound much of the day.

Haroldina

Haroldina

I moved us into my little old lady house, and the night I put her cage in the room she’s in now (my office), she laid her first egg in awhile. It was an odd time of year for that, but that’s how it went.

Last November, my last contract as a DBA ended and I got back to the business of trying to figure out what I want to do for a living again. I got really sick with bronchitis (or something like it) just before Thanksgiving, and stayed that way for a few solid weeks. Again, my feathered friend laid some eggs. I went through a lot of changes that aren’t so easy to describe. Digging through stuff in therapy changes. Significant changes to the core of who I am… Or rather, peeling back layers of the onion to reveal more of that core.

So far this spring, she had been fine. Perhaps a bit more noisy than usual, but that comes and goes. I had a brief contract doing UX work in May, and I worked on a startup for a few weeks after that. A few weeks ago, I felt like I needed to let the startup go, and I did. Since then, I’ve been quietly reassessing. And I feel that something big is coming. I felt like I had a good idea of what that was, but now I’m not so sure. It just feels like another major shift. And sure enough, my little bird is nesting in the next room.

I wish I could stop her from doing that. I’ve read plenty of blogs about how to discourage breeding behavior in pet birds. I’ve done everything they’ve suggested except for getting her hormone injections of some sort. Unlike cats and dogs, you can’t easily spay or neuter birds. They’re not generally prolific enough breeders to warrant such a thing, anyway. I just don’t want her putting her non-spring chicken body through that for nothing. But it does make me wonder what’s coming up next thanks to the bird who lays the golden change.

Trial Periods

I’ve been thinking a lot about trial periods lately. I’ve been unemployed since November and getting by with help from my friends and family. During this time, I’ve tried lots of things with free trial periods. As soon as I start them, I carefully mark their expiration date in my calendar so I don’t incur any charges when I can’t afford it. When that date comes up, I cancel whatever it was, and make a few notes about what I thought of it so I can decide if it’s worth paying for later.

There’s another side to it, though. The things I paid for after the trial period expired… Some of these are monthly services I could cancel at anytime if I’m not using it or stop liking it for some reason. I’ve had many experiences where I kept putting up with something long after I stopped liking it, or it stopped being useful, because I felt I passed the decision-making portion of that transaction already. I tried it, liked it enough to buy it, and that’s it. I didn’t have to think about it anymore after that. The evaluation period was over, so I tended to discount the input I received after that time.

I’ve done this with many things and situations. Not just software and apps. I’ve done it with cars, jobs, houses, relationships… everything, really. There’s some perceived “point of no return” where I felt that once I passed that point, my opinions were somehow invalid. Actually, I don’t think I ever even get that far in the thought process. I think it’s more a matter of thinking about more pressing things, and just letting other things go; not wanting to give them my mental energy anymore.

Illustration of evaluation periods

One evaluation period vs. many

Evaluation can be exhausting, after all. Really looking at things and scrutinizing them… it’s not easy. I think a lot of us have a tendency to just settle for “good enough” and leave it at that. “Sure, I’m miserable at my job. I dread waking up and going there every day. But it pays the bills.” “I suppose I do feel kind of trapped in this relationship. I’d like to do a lot more things on my own, but I don’t want to rock the boat. It’s nice to have the security of knowing that other person is always there.” “I hate having this hour commute to work each day, but I bought the place when I had a job that was closer, and now I’m stuck. I don’t want to move.”

There are hundreds of lies we tell ourselves that keep us stuck in situations that no longer serve us. We are comforted by things that are familiar, secure and stable. We live in a society that rewards the latter two quite a bit. “Oh, that’s good. You stayed in the same job for seven years. That means you have a good work ethic.” In my case, that’s more like “Good job dying inside every day for more than five years while you were too scared to leave and thought that you couldn’t do any better.” I suppose that also describes a few of my relationships. Yikes.

It’s not good, though. I’m not saying it’s bad to stay in a job or a relationship for a long time. I’m just saying that bad things can happen if we eliminate evaluation periods from our lives when we think we’re comfortable. For the most part, I think we do that out of fear. We’re afraid we won’t like what we see if we really look at it. “Don’t lift that rock, thar be creepy crawlies! I lifted it once and there were creepy crawlies, and I never want to see those again!” There is also “I’m fine. Everything’s fine. We’re fine. EVERYTHING IS FINE, OK?!” If that were true, taking a closer look wouldn’t be so scary.

A lot of good can come out of evaluation periods, too. Especially in relationships. So many relationships fail when one person starts to feel like things are falling apart or going awry, but they don’t talk to the other person about it. They assume that they’re alone in their feelings. The level of communication decreases, rifts appear and widen to chasms. It’s usually at the point where that person feels things have become irreparably damaged that they finally let the other person know they can’t do it anymore. And quite often, the response they get is “You were feeling like that the whole time?! SO WAS I!” More frequent and honest evaluations and communication of the findings can go a long way to keep a relationship healthy.

Jobs are easier to check. If you’re living for the weekend, and get a crippling sense of dread as Monday morning looms near, you could probably stand to make a change. I’ve referenced Switch before, and I’ve been listening to Drive on Audible. Both are great tools to help you get unstuck.

I was walking with my friend, Andrew, the other day and he mentioned a Steven Wright quote: “Everywhere is walking distance if you have the time.” It got me thinking… Trial periods don’t ever really expire. Sure, there comes a point when the consequences for quitting change and make that less appealing, but most perceived points of no return are an illusion. And maybe you can’t go back to the way things were before you started. But you CAN go on to see what’s next. Even when that part is unclear.

I’ve been living like that for over a year now, and I’ve never been happier. I’ve done some things that worked really well for me. Those things I’ve incorporated into my daily life as much as possible. I’ve done other things that didn’t work out so well, and I let those go relatively quickly. I note what I like and don’t like in situations, and move toward what I like. Sounds simple, but the results have been quite dramatic. In the past couple years, I’ve met and befriended some truly amazing people. That never would’ve happened had I not let go of the things and people that weren’t working in my life to create space for them. It’s that knowledge that propels me forward. If I’m holding onto something I don’t like, what am I preventing from coming into my life? Odds are that it’s something better. And that notion is good enough for me.

So take a look around at your life. What situation would you cancel before the trial period expired? What would you gladly keep? The answers might surprise you. I know they’ve surprised me.

My Horse Friend Charm

Before I was a member of the board of directors at Serendipity Stables, I was just a person who went to workshops there. One such workshop was in December 2011. It was one of the several Native American Energy Balancing workshops I attended, and it was just Michele Davis (Serendipity’s founder and President) and me for this one. It was cold out, so we did most of the workshop inside Michele’s house. She showed me how to do some energy balancing on her cat, Ruby, who quickly went from purring to napping. Then Michele suggested I go out to the stables and do the same work with Sere (pronounced “SAE ree”), the oldest and most experienced healing horse. I went out, but couldn’t find Sere. This was before she had her cataract problem, and she was roaming the grounds freely. There were a few of the horses huddled in the stall behind Sere’s. I walked up to the gate and asked out loud “Who wants to work with me?”

Before I finished that sentence, one of the smaller horses with big, soft eyes had made her way over to me and looked right at me. It seemed clear that she had volunteered. She didn’t nose around for treats, as is often the case. She just looked at me, and I said “Well, thank you…” and as soon as I started to wonder which one she was (several of them look very similar) I felt like this must be Charm. She dropped her head and her breathing slowed. It seemed like she was in what Michele referred to as the “healing stance.” I felt like instead of practicing on her, she was doing healing work on me!

Charm

Charm

Michele came out to see how I was doing, presumably with Sere. When she saw me with Charm, she said “She’s doing healing work on you. Don’t worry about practicing. She says you need some help.” I did. I had been diagnosed with a 4cm ovarian cyst a few days prior to that. The doctor told me that she would let it go for a month and see if it got bigger or smaller. And if it got to 5cm, she would decide whether I needed surgery or not. And as Charm stood there in front of me, I felt an odd sensation around the area where the cyst was. It felt kind of like popcorn popping inside me. Lightly. It wasn’t uncomfortable. Just unusual. When that sensation subsided, she brought her head back up, and Michele gave me a couple treats to give her for her work. She let me practice on her after that, and I felt great when I left that day.

About a month later, I went back to the doctor for a follow-up exam. I didn’t have any expectations. I figured it would probably be the same size, or maybe a little smaller. I was pretty surprised when she told me that my ultrasound was completely normal. The cyst was completely gone, and everything looked as it should. This is not unheard of, or even terribly uncommon. Most women have a few ovarian cysts over the years. They generally come and go without even being noticed. But I was thrilled, regardless. That meant no surgery for me, which was great because I was losing my health insurance at the end of the month, and that appointment was the last one I went to that was covered.

I feel that Charm helped to heal me. And she did it asking for nothing in return (except for a couple horse treats). That was my first of many good experiences with her. A few months later in July, I became a board member. The horses help people. They are incredible beings and wonderful healers. This is just a small example of the many things they’ve done to help people, and especially children. Many times people come to the stables after they’ve exhausted most other options. They figure “Why not? It won’t make things worse.” and often they leave surprised by the help they received. And they often return again and again.

We had an unfortunate event take place this past Friday in the wee hours of the morning. While Charm was lying down sleeping in the pasture, a coyote attacked her and mauled the left side of her face. Thankfully, both her eyes were spared, but there is a lot of damage on her face from her ear to her nostril. It was a hugely traumatic event for her and the other horses.

Many of you have sent healing energy to Charm and the other horses during this difficult time. We appreciate it so very much. She is responding well to the treatments, and it looks like she will recover from the attack. It is going to be a long road to recovery for her, though. She is such a sweet, gentle and giving soul. Please keep her in your prayers and send healing energy if you are able to do so. Also, if you would like to donate, please click on ReDonate and either make a one-time donation, or sign up for the reminder service and just give what you can each month. You’ll just get a reminder email with a link that you can click on to donate, change the amount, or ignore it. Completely up to you.

There is something very special about Serendipity Stables and Charm. I know many of you who have been there have experienced it firsthand. Those of you who haven’t yet owe it to yourselves to come and check it out. We have an open house on the Second Sunday of every month. We hope you’ll come and join us at 21721 State Route 47, West Mansfield, OH, 43358 between noon and 4pm.

Update 4/20/2014: Charm made a full recovery and is doing very well now. She’d still love to see you at any of our Second Sunday Open Houses! 🙂

A little bit about intuition

I used to be a lot more of a gamer than I am now. I always enjoyed games, especially video, board and card games. I think somewhere around 2005 I started hosting board game nights with a group of guys I worked with a couple times a month. I only owned a few games, but I lived in a big house with a nice place to play, so the guys would bring their duffel bags full of games and 6-packs of good beer and some energy drinks. We’d play for hours and practice the fine art of trash-talk.

A few years ago, I was hosting a game night and I won at Alhambra again after having my ass handed to me in some other games. I was wondering aloud why I usually won certain kinds of games like Alhambra (some strategy, but lots of variables left to chance). My die-hard gamer friend turned to me and said “It’s because you play intuitively rather than strategically.” Huh. I must’ve looked confused, because he then offered further “It’s why you rock at Alhambra, but you suck at chess.” OH!

That applies to a lot more than gaming in my life. In fact, I think it applies to every aspect of my life. I feel like I’ve always been that way, but it’s only been in recent years that I started to accept and understand that about myself. Before that, I feel like my intuition was always there, but it was crushed beneath my mountains of logic, rationalization and justification. “This and this, therefore that.” In thinking and acting along those lines, while largely ignoring my intuition, I put myself through a vast world of pain.

You're entering a world of pain!

If only my intuition was as clear…

Back up there for a moment. Re-read that last sentence a time or two. The key phrase there is “while largely ignoring my intuition.” I am NOT saying that rational thinking is bad. Rational thinking is great! I have tremendous love and respect for amazing people like Albert Einstein, Carl Sagan and Neil deGrasse Tyson. The problem comes in when that rationality is divorced from intuition. They should be dancing together. Daaaahnnnssiing, dahlingk!

In recent years as I’ve opened back up to my intuition, things have gotten infinitely more interesting, weird, bizarre, embarrassing, and awesome. [random: I say “Oxford comma” in my head whenever I decide to use one, which kind of answers that song by Vampire Weekend.] I’ve made some big life changes and pulled 180’s with eye poppin’ G-force. This is not for the faint of heart and comes with all sorts of warning labels. But as with most warning labels, I peel them off and stick them somewhere inappropriate that makes me giggle, and then I do my thing anyway.

I watched the movie, Jeff, Who Lives at Home when it came out in the theater last year, and really identified with it. If you haven’t seen it, here’s the trailer. Jeff has all these random coincidences and sees signs everywhere. But which ones should he pay attention to or act on? Well, pretty much all of them. Doing that takes him on this crazy journey. He gets hurt a lot along the way, and at best people think he’s a lovably kooky slacker. At best. But people also think he’s straight up nuts, incredibly lazy, gullible, [Oxford comma] and useless. He doesn’t know why he’s being prompted to do these things. But he is and so he does them (often against his judgment and the judgment of those around him). He doesn’t have any real clue what it’s leading up to. There’s no goal he’s working toward or something he’s trying to attain or acheive. He’s just doing what feels like the thing to do in that moment and going with it.

And more and more, that is how I’m operating in my life. I’m currently unemployed with no clear idea of what I’ll be doing next for a living (well, I’d like to do UX and user research work, but it’s not like I know where, when, how or if it will happen). I know many people who would be terrified in my position. The uncertainty, instability, etc… But I’m not. I feel pretty good, actually. I have a robust support network of friends and family right now, and I’m just doing what feels right in each moment as it presents itself. I’m figuring it out as I go and playing it all by ear. And I feel like everything is working out just fine.

If you’re reading this, I love you

If you’re reading this, I love you. It’s that simple.

If you know me and we’re friends and enjoy each other, of course I love you.

If you know me and you’ve hurt me in some way that you’re ashamed of or feel guilty about, I hope you can forgive yourself and let that go. Because I love you and forgave you for it already.

There are no caveats or conditions. Nothing you need to do to earn it. No flaming hoops to jump through. I just love you.

All of us are flawed. All of us are doing the best we can with what we’ve got at any given time. That thing you did that you look back on and cringe… You did your best at the time. Try to feel what you would feel if it happened to your best friend or partner instead. What advice would you give them? Forgive yourself, love yourself and let it go.

And if you’re not ready to do that yet and it just seems too hard, be kind to yourself and understand that it will come in time when you’re ready for it.

Thank you for being part of the world and adding your unique perspective and experience to it.

I love you. <3 <3 <3

“I was looking for a job and then I found a job,

and heaven knows I’m miserable now.” ~The Smiths

I’m generally a pretty happy person for somebody whose life is often narrated by old Morrissey and The Smiths songs. But this one has played in my head a lot this year. And it was exactly what happened in my most recent foray in the land of the gainfully employed. But more than that, it’s also a form of “Wherever you go, there you are.”

As a people, we focus on problems. We obsess and crank away on them during sleepless nights when we just can’t get a handle on the stuff of the day or our perceived tomorrows. Thoughts along these lines come from the book Switch: How to Change Things When Change is Hard which I read recently and is awesome. We skip right over most of the good stuff that’s going on and hone in on whatever we perceive to be problematic. It’s how we’re wired. But we don’t have to BE our natural tendencies.

That song kept me in check a lot during my months of unemployment early this year, and then my months where I wasn’t making enough at my job to make ends meet. Of course it was tempting to think “When I get a job making more money, everything will be great.” But I knew that was a lie. The truth is closer to “When I get a job making more money, there will be a few financial concerns that I no longer have while I’m at that job. And that will free me up a bit for other challenges that can emerge once those financial concerns are alleviated.” And that is pretty much what happened.

I was only unemployed for two short weeks between these last two jobs. I visited friends in Cincinnati, we baked some s’more cookies, I came home and got right into my next job. And at this job I made over twice what I did at the previous job. Cha-ching! It was pretty nice to go from not being able to scrape by on my own (thank you Mom and friends who helped me through all that) to being able to pay my bills that had piled up. Within 5 weeks, I was pretty much alright again financially. Still in debt from the previous months, but more financially comfortable than I had been all year.

I had taken a job doing database work again. It was a solution to my problem. I needed to make a bunch of money fast so I could afford my recent trip to California (which was life-changing and deserves its own series of blog posts), and so I could afford to live, basically. And so came this job where there was zero on-call support, which is pretty much unheard of in DBA work, and I got to clock out at 5pm every day. “Sweet! I can do database stuff for 8 hours a day, and then go home and do other stuff and make good money. It’s a reasonable trade-off. I can handle this.”

And I had a stellar attitude about it for the first three weeks or so. And just as I figured they would, the challenges presented themselves once the sting of my financial situation had been sufficiently mitigated. I realized it wasn’t so much 8 hours out of my day. It was more than 11. I spent 9 hours in the building every week day, and 2 hours a day in the car commuting. There was no place to go for lunch that was anywhere near any of my friends, or even a restaurant that was much higher caliber than fast food. I sat in a gray box for 9 hours with people who had been there for years and planned to retire from there. Lifers. Not that there’s anything wrong with that, it’s just not a mentality I relate to well. And to me it was feeling a lot like “doing time” instead of doing a job that I sort of liked and was somewhat good at.

And when I got home from work, I was too exhausted to do anything that required much brain power. I’d watch some TV, read a little and go to bed early. My time socializing went down considerably, too. Doing things much later than 8pm just wasn’t feasible for my getting up at 5:30am schedule. And so I got a bit depressed. I didn’t really know what to do. The trade-off was seeming less reasonable day by day. But I felt like I should at least finish out my contract there. So I kept doing my thing until they let me go last Friday without warning or notice.

And so, the Universe balances itself out. It always does. Of course I was upset and shocked initially. That has never happened to me before. But I wasn’t happy there, and the two days I’ve had so far where I didn’t have to go there have felt like a gift. I don’t feel like I need to scramble to find another job just to get by right now. I want to take some time to regroup and get back in touch with what’s important to me.

I am not my job. I am not my résumé. There is no event I’m waiting for before I can be happy again. No future pie in the sky that I’m just waiting to bite into. I am here and now. I inhale and exhale. Sometimes with purpose, sometimes automatically. Things that happen to me only define me if I choose to allow them to do so.

And so far this week, I’ve made lunch plans on the fly and eaten at places I enjoy with people I like. And sometimes being happy is just that simple. I’m grateful for the times when I recognize that.

When I Grow Up – Part 1

I don’t know what I want to do when I grow up. I say that often enough. At 37, it might seem like a funny thing to say, but it’s true. It’s always been true.

I remember how I felt as a little kid being asked that question. I’d think, “I don’t know. How could I know that?” And often enough, that’s the actual answer I’d give. My cousin would say she wanted to be a nurse, like her mother. My mom was an elementary school teacher, and I never wanted to do that. Stand up in front of a classroom every day and talk? Try to get a bunch of kids to sit and pay attention to school work when it was the last thing they wanted to do? Be around kids all the time? No, thank you. Not for me.

I remember when I was really little and out with my mom somewhere, I saw somebody typing. I don’t remember who at all. I just remember the sight of their fingers tapping away at the keys, effortlessly. Like those fingers had a mind of their own. How did they know where to go like that? How did the person’s brain work to tell their fingers what to do? They moved so fast and they typed the letters in the right order somehow. And I was fascinated by that. I wanted my fingers to do that.

In fifth grade I bugged my mom enough to let me take a typing class. She let me use her old Smith-Corona. It was a pale turquoise manual typewriter with white keys. It came in a black hard suitcase. A portable model. I couldn’t lift it, but it was portable. And I loved my typing classes. I didn’t really like making pictures out of X’s and such. A 4 leaf clover for St. Patrick’s day, a bunny for Easter… The instructions like “space 4, X 10, space 8, X 19” etc. That was just tedious counting. The pictures were neat at the end, though. I liked learning to type the sentences more. “Mary jumped over the fox and ran around the frozen pond.” Over and over again.

After a few years, I became a decent touch typist. I had no aspirations to be a secretary, so my parents didn’t really get why I wanted to do that so badly. And for me, it was never really more than wanting to make my fingers move like that. I had no larger aspiration at that time. I had no idea that the keyboard would become the doorway to the Internet one day. I just thought typing fast seemed pretty neat and that was it.

Around the same time, I decided I wanted to play the oboe. I had to fight for it as there were already two oboe players in the band and that’s all there could be. I took lessons on my own and petitioned to challenge the current oboists for their chair. Eventually I got it, and I became first chair oboe in the Perry High Symphonic Wind Ensemble, which was the finest band I ever played in. I enjoyed it and that was well and good. I didn’t think about it being what I wanted to do when I grew up, though.

But suddenly it was time for college, and I didn’t really like anything else yet. I wanted to take a year or two off to figure things out, but got pressured into going immediately, and thus became a music major. My high school grades weren’t good, but my test scores and oboe playing got me a couple scholarships and so that’s what I did. And I did it until I found myself not enjoying listening to music anymore. Always trying to figure out the chords, intervals, tonalities and time signatures sucked the fun out of music for me. It took several years before that dissipated and I once again heard music instead of a collection of notes.

Next I worked in the Juniors department at Kaufmann’s at a mall back home. Then I sold carpet there for a year. And after that I went to OSU for design. That was an interesting year. I really applied myself for the first time. I had several classes that were art and drawing-centric. I drew hundreds of chairs in my industrial design classes, shapes with perfect line weights for my Engineering Graphics class… I was so good at my orthographic projection homework, and loved messing around with AutoCad.

I got the best grades of my entire educational career that year. I remember a talk given by a guest speaker for one of my design classes. He was a product designer and brought shower caddy he had designed with him. He talked about the considerations that went into making it. The places for the razors, soap, shampoo bottles, etc. And then he talked about noticing how his wife would turn the bottles over when they were nearly empty and store them upside-down to get the last bit of shampoo or conditioner out. And so he adjusted his design to accommodate an upside-down bottle and keep it from falling over. Again, I was fascinated by this. He had the power to change things and make them work better. I wanted that power, too.

In that, I am a designer. I notice things like that. I appreciate the consideration that went into the design features of most things I come in contact with. Some brands have really impressed me. Like Breville, an Australian company that mostly makes small kitchen appliances. I really love my Breville juicer. It is well designed from top to plug. I once saw a $200 hot tea maker of theirs in action. It was so beautifully designed, I got a little choked up as it brewed me a perfect mug of herbal tea. I’m telling you, it was amazing.

Back to 1997 for a minute. I was at the top of my classes and doing well. I was also working part time as a transcriptionist at Harding Hospital (a full service mental hospital). I was working hard and doing really well. I had signed up for my next semester of classes and was working on my portfolio and getting professor’s recommendations to vie for one of the 14 spots in the Visual Communication Design program. I was between that and Industrial Design. At the time, I thought I wanted to be a graphic designer and was headed toward Vis Com, though my heart was more into product design.

Anyway, I had a 4am moment of clarity in the thick of it all, and decided that it wasn’t what I wanted to do with my life. At the time, my argument felt well-reasoned and justified. I stuck with the transcriptionist gig instead and just went full time at Harding. Looking back now, I am pretty sure I chickened out.

To be continued…

I’m fine, then?

I had my sleep study a week ago last Wednesday. It wasn’t the most fun I’ve had, but it wasn’t awful. I went in around 8pm and they had me hooked up to electrodes, breath tubes and all manner of sensors and ready for sleep around 9:30pm. I slept on my back, kind of afraid to move. They assured me that everything was latched onto me securely, but I didn’t want them to have to hook anything back up again. I had to flag down the attendant a couple times to go to the bathroom in the night. It was her job to watch me on night vision camera, so I just waved my hand and she came in. Yeah, kinda creepy.

In the morning they unhooked the breath tube, the electrodes on my legs and the sensor belts around my torso and let me sit in a recliner and mess around on the internet while I waited for them to tell me to take a nap. When they did that, I got all hooked up again and calibrated the equipment by moving my eyes and grinding my teeth on cue. And then I tried to sleep. This is not how my narcolepsy symptoms manifested at all. They didn’t have me listen to a lecture, sit in a meeting or read a book until I blinked out. But I suppose they checked the order I went through the sleep stages when I napped (narcoleptics hit REM sleep first unlike most people). And I took 5 scheduled naps. I think I actually fell asleep for 3 of the 5.

At 5pm after the daytime study, they unhooked me and sent me home with electrode goo (the consistency of Vaseline and sand) all through my hair and still on my face and body. Unpleasant, but not awful. They made it a point to tell me several times that they wouldn’t discuss any of their observations with me, and that I’d have to wait for the doctor to look over my test data and get the results in a consult within the next couple weeks. OK, fair enough.

On Friday, 8/10/12 (aka “yesterday”) I got a letter in the mail from a neuroscience lab. I figured it maybe contained the date for my consultation to go over the results. Finally, I was another step closer to getting my diagnosis and then treatment. I was giddy as I opened it. And this is what I read:

“Your sleep study was rather unremarkable. Your nighttime sleep was normal and your daytime portion of the test failed to show evidence for narcolepsy. He might have an idiopathic hypersomnia but overall this sleep test seems to be normal. Certainly, if your symptoms persist and no other cause is found, then we could reevaluate this in the office.”

My first thought was that my results got mixed up with somebody else’s. I think it was because he used “He” instead of “She” and I also just didn’t know how to wrap my head around those results. That thought was fleeting and was gone in a second. So my sleep study was “unremarkable” and “seems to be normal.” So what does that mean? Before I could think much more about it, I just started to cry.

I’m not a hypochondriac, nor have I made these symptoms up. I’ve dealt with this crap most of my life. And now there’s no diagnosis and therefore no treatment. Huh.

My mind spun through all the stories of all the times I’ve fallen asleep inappropriately and at inopportune times. “But what about THAT and there was THAT and oh man… that…” It’s normal… I guess. Yay?

It just made so much sense to me that I was narcoleptic. That answered a question. And then that answer evaporated into the ether.

When I was 23, I went through a lot of changes in my chemical makeup. I guess. Basically I went from being 5’8″ and having to eat a ton to just keep 117 lbs on my frame to gaining weight and starting to experience mysterious health problems. In a matter of weeks, I went from sleeping 6 hours a night to 13+ hours. I had experienced that during a bout of severe depression when I was 20, but I didn’t feel like I was depressed when I was 23. I was just going to work and doing my thing. Felt relatively happy. But as my need to sleep increased to the point where it was hard for me to function, I felt less happy.

I went to the doctor and got all kinds of tests run. They all came back perfect. Like “Do you run? You’re in great shape!” (note: I was a couch potato with a high metabolism and ate a lot of fast food. Never understood how my blood work was so great.) I was a transcriptionist at Harding Hospital (a mental hospital) and had learned about things that caused symptoms similar to mine via typing up psychiatric evaluations and patient histories. I was sure it was a thyroid problem after everything else came up normal or better. When they tested for that and it also came up perfect, I felt so lost.

At that point, I was sleeping 13-18 hours in 24, and could not force myself to stay awake at work. I was foggy headed, couldn’t think clearly and missed most appointments regardless of how many reminders I set for myself. And yet… I was fine according to the tests. But I wasn’t. I wasn’t fine at all.

Eventually, I walked to the outpatient side of Harding and talked to a psychiatrist. I didn’t know what else to do and I just couldn’t continue like that. He tried me on Prozac first. For about a week I was able to get out of bed in the morning. I also developed a ravenous appetite, yet I began to lose the weight I had gained. Didn’t make sense, and after a week I stopped being able to get out of bed in the morning again. He tried me on something else. It didn’t work either.

And when I had completely given up hope, he tried me on Wellbutrin. And that was the magic pill for me. Within 2 days of first taking that, the fog had lifted completely and I went back to only sleeping about 8 hours a night. I got right out of bed in the morning and felt “normal.” I also started to sweat about 3 times as much as I used to and had crazy vivid dreams, but hey. It was a miracle to me. I was a functional human being again. It was amazing.

I had to take that for the next 5 years. Every time I stopped, the excessive sleep problem came right back. When I was 27, I got far more sick and gained far more weight. Then I turned to fasting and a primarily raw vegan diet, stopped taking all my medication and got really healthy. I did that for a couple years, and while my arthritis, allergies and all that other unsavory stuff went away, my narcolepsy symptoms persisted. Which is why that diagnosis made so much sense to me. And yet somehow, that’s not it and I’m “normal” again.

We’ve all got our stuff. And as far as things go, this isn’t anything debilitating or life threatening. And I’m very grateful for that. Most of the limits I operate under at this stage in my life are self-imposed. I’m grateful for that as well. This is just something to process and deal with. I don’t think I’ll pursue this any further (via another sleep study, etc). I’ll continue to self-medicate with caffeine and such as long as what I do for a living requires it, and I suppose that’s about it for now.

Smells like Narcolepsy

Hey, friends. Since my last post about my battle with sleepiness, I have been to a sleep consultation and talked more to people with sleep disorders. I have a sleep study scheduled for the beginning of August, so I will finally get to explore treatment of this problem I’ve dealt with nearly 30 years. After spending 10 minutes talking to a sleep specialist and explaining my symptoms, he said it definitely sounded like narcolepsy without cataplexy. That last part is something I’m extremely grateful for. Narcoleptics with cataplexy lose motor control and faint when experiencing strong emotions like being startled or really happy. Basically, their brain gets tricked into thinking they’re asleep when they’re not. I don’t have that part, and I’m really glad about that.

My narcolepsy is more mild, and that’s part of why I’ve gone so long without getting it diagnosed. It can be really annoying and inconvenient, but it’s not life-threatening in my case. Since I first wrote about it, I’ve been improving my sleep hygiene by getting 8 hours of sleep most nights and trying to keep to a regular sleep/wake cycle that centers around my day job. And my symptoms have improved a bit, but they haven’t gone away. I’ve explained to my managers that I’m working on getting treatment for it, and they’re understanding to a degree, but still get frustrated with me when I fall asleep inappropriately. Sometimes I can stay awake and sometimes I can’t. I suppose that’s what it boils down to. And sometimes I can get 8+ hours of sleep a night, and the next day feel sleepy. I’ve improved my diet again, and that helps, too, but there are still a lot of factors that are beyond my control. And that’s where the treatment comes in.

Watching things like Lissa Rankin’s TedX talk has helped me to understand some of the deeper implications of the problems we experience with our bodies. I’m working on a more holistic approach to… life. It’s all part of the journey. Bumpy though it may be from time to time.