Bite Size Blogging

Apparently, today is moving day! As I mentioned in my previous post, Bite Size Life is a promising, new location on the web for narcolepsy support. I have been intending for sometime to get my blog transferred there, but the stars refused to align. Suddenly, as so often happens in my life, everything came together within an hour of my previous post. Thus, Narcoleptic Knights can now be found at www.narcolepticknights.bitesizelife.com. Hopefully, I am bright enough that I can continue to have the posts I write there, show up here too. The good news is that ALL of my Blogger posts are already on the bitesizelife. com site! Hooray! I do hope that this change does not cause major problems, but I am excited for a new adventure. Also, I am more determined than ever to provide some live blogging from the Narcolepsy Network conference. Cheers!

Jetting to Jacksonville

I awoke this morning in a huge hotel room. The national Narcolepsy Network patient conference begins today in Jacksonville, Florida; I arrived late last night (technically, early this morning). While I remain uneasy about being here, I must confess that my beautiful view of the Saint John's River certainly makes me glad for the break from my daily grind. I also know that I will enjoy many aspects of the conference. Hopefully, I deepen some of the friendships with other PWNs that I began at last year's conference. And, many new PWNs await me as well.

At the same time I could not help feeling loss and regret as I ate during my layover in Atlanta. More than anything, I want to help and connect with other PWNs. While this blog does that, my primary outlet for the past year has been the Narcolepsy Network forums. At least it was until mid-September. I deeply believe that the work of some dear friends in those forums is a huge reason for Narcolepsy Network's recent upswing in membership. Certainly, the number of people using the forums exploded during the last year, but I also know that Narcolepsy Network saw tremendous growth in paid memberships during that time as well. Unfortunately, the people most responsible for making the forums a welcoming and safe place for PWNs will not be with at this conference, nor do they oversee the forums any longer. I remain utterly bewildered as to how the people running Narcolepsy Network could be so obtuse as to not understand the vital role that those forums and individuals have played in the organizations sudden expansion.

The crux of it all for me is that I see the internet as a PWN's most vital tool. Few of us are able to find doctors who truly understand our condition. Although many larger areas do have local support groups, most PWNs need far more connection than a few meetings a year can give. Those factors, added to the reality that many PWNs literally know no one who has their condition until they find a support group (if they can find one), mean that the internet is the one location that a PWN can interact with other PWNs on a consistent basis. Up until mid-September, I would have believe that such a reality was obvious to everyone associated with Narcolepsy Network. Now, though, I have serious doubts.

My experience at last year's national conference was incredible. Certainly, being some place where I knew that 300 other people truly "understood" narcolepsy was a primary component of my joy, but far more significant was meeting face-to-face with many of the people that I had meet online. I am guessing that I will have a similar reaction this year. But, what vexes me to no end is that I doubt that other PWNs will get to have that opportunity in years to come. Since things changed on the Narcolepsy Network forums, I do not see the same level of interaction and vitality there. In fact, it is strange to see that in August the forums were adding 20 new members within 2 to 3 days, but now it might take a week or more to add 20 people. My observation is not researched or vetted, but it definitely seems like the energy in the forums is diminishing.

Clearly, I would love to see my friends back running the Narcolepsy Network forums, but deeper than that I honestly saw those forums as a way to improve significantly life for other PWNs. So many of us struggle to interact with the world because our enery is so limited. But, going online takes far less effort, and one need not drive somewhere to do it. I left my position as a moderator on the forums because of the way my friends had been treated, but I also did it because I did not (and still do not) trust the decision-making of the current board when it comes to Narcolepsy Network's online presence. If they honestly had no idea how active and energetic their forums were, it is a sad reality. Certainly, many other online support groups for narcolepsy exist, but Narcolepsy Network's advantage was (and still is if someone can right the ship) that they are a federally recognized non-profit with a national convention. Adding a strong and lively online community to that would make them the best resource anywhere for people with narcolepsy. Now, I wonder what will happen.

Of course, I could be crazy. Narcolepsy Network might have thrived in the past year due to some other reason. Only time will tell. Also, the other support groups, particularly the Facebook Narcolepsy Support Group and a new site Bite Size Life, might adequately fill any void created by the changes at Narcolepsy Network's forums. Another definite possibility is a group in Second Life called Slumber Society. In the end, though, I need something for me. Selfishly (which I need to make a priority more often for myself), I need to find something that will give me the same fulfillment that my moderating on the Narcolepsy Network forums. Yes, I could "ask" to become a moderator for Narcolepsy Network again, but I will not work for the people currently "in charge" of the forums. As far as I am concerned, they haven't a clue about running a forum effectively. I also know that I can't afford to put in the energy that I did over the past year only to have it ripped away again. Thus, I find myself in limbo. I need to help other PWNs; it is something I do well. But, I also am struggling with my own energy so much that I do not have the time to figure out where to put my (currently non-existent) "narcolepsy support" energy. Time will eventually guide me in the correct direction, and I have learned enough to allow myself to trust the process. Unfortunately, that does not lighten my current mood, nor does it mitigate the hurt that I still feel from the events in September. Still, I know this chapter is just one more lesson that narcolepsy has for me to learn.

Regularly Random Routine

One thing I know helps me is a set routine. Unfortunately, I do not feel like that has happened since the previous school year ended. I have come to expect that my summers will be all over the place. Because I teach an intensive creative writing course and then we travel, summer tends to be an unending cascade of starts and stops. Since my profession allows me two and a half months of unpaid vacation, I usually handle the rudderless aspect of June, July, and August as well as I can. Usually, though, the arrival of September affords me the blessing of a fairly standard daily schedule. For some reason I have yet to find that rhythm this year.

Certainly, the crazy weekends that took place for my family in September exacerbated the situation, but it goes well beyond that. For the first time that I can remember, I had more of a pattern to my day in August than I do right now. Rather than getting easier, my days seem to be growing in complexity. I have no doubt that much of that is in my head and in my reaction to my narcolepsy. Nonetheless, my days feel much more fragmented. I am weathering them well, partly because I have come to accept the reality that I have a disability. Still, I find my anger and frustration rising to the surface far more often of late. I also know that my depression seems to be growing in strength lately. I also find it difficult to "be hopefully" while also "accepting my realities." As always life and narcolepsy seem to be a paradoxical and oxymoronic as the title of this post!

Excessive Exhaustion

Although I seem to be handling my struggles better, I find it infuriating that my narcolepsy seems worse than ever. I know that my condition moves in cycles, and I am clearly in a down turn at this time. Still, getting up in the morning is more difficult, and my evening peter out far sooner than they did last year. I am scared that narcolepsy is progressive. I realize that my amphetamine dose is likely less effective, but I also doubt that the drug's impact has curtailed to the extent that I am once again experiencing fogginess in my thinking and the possibility of micro-naps. Even today, my drive home from school felt much closer to the automatic behavior rides I remember from my pre-diagnosis days.

Adding to my concern is that I am at a loss as to where I should turn medically. Since my sleep doctor did not even both to come into the room during my last visit, I doubt he will be much help. While he definitely understands the basics of narcolepsy, he is a pulmonary doctor whose true focus is obstructive sleep apnea. What I need is a neurologist who is well versed in sleep. Sadly, such physicians are few and far between. The "premier" group in the Minneapolis and Saint Paul area apparently has a narrow view of narcolepsy. If you are not text book, then you do NOT have narcolepsy. Since I am functioning less well on my current medicinal routine, I highly doubt that "losing" my diagnosis would do me much good. I boggles my mind that I am NOT going to a doctor because I am afraid that the doctor might tell me I do not have narcolepsy. I KNOW that I have narcolepsy, but the fact that I personally have talked to people who have been to this group worries me enough that I am not going to take the risk.

In many ways my current situation underscores the ridiculous reality that far too many PWNs face - we have a disease that does not "fit" in the contemporary structure of medicine. Most specials focus on a specific body system, but sleep medicine covers an enormous range. Obstructive sleep apnea alone involves the throat, the lungs, the brain, and even the heart and other organs when untreated. So, one can find sleep doctors who are ENTs, pulmonary specialists, neurologists, and even cardiovascular physicians. And, the essential mechanism of OSA is fairly well understood. Narcolepsy on the other hand is an autoimmune disease in which an environmental trigger has caused a genetic predisposition to activate, resulting in the body attacking small cells in the hypothalamus. Thus, those same sleep doctors who treat OSA periodically get PWNs as patients. But, few of them understand narcolepsy (which is still in its infancy in terms of medical insight). The situation only worsens when one realizes that the limited number of PWNs and the extreme nature of our drugs (class II stimulants and sleep aides like sodium oxybate) provide little to no financial incentive for any doctor considering sleep as a primary area of interest. The one small ray of hope is that the recent discovers about narcolepsy may spark significant interest among immunologists - now that it is clear that narcolepsy is an autoimmune disease.

None of that rambling helps my overly sleepy state, however. I remain proud of myself for accepting my situation and for pushing ahead with the best attitude that I can muster. Nonetheless, I abhor that mowing my small lawn today completely did me in. That comes on the heels of a Saturday and Sunday that saw me accomplish little because I was drained from talking to my wife and from confronting another parent. All of that happened on Saturday, but I needed all of Sunday to recover. In fact, I would argue that some of my current lethargy is also linked to my mental and emotional exertion on Saturday. While I know that I am doing the best that I can, the rational side of my brain is screaming about how pathetic the reality is. Yet, I have no choice, but to breath and to accept my disability.

I am looking forward to the Narcolepsy Network conference this weekend. While my relationship with the organization feels shaky at this time, I am thrilled to be going somewhere where my "norm" IS the "norm." Sitting in a room, or even having a casual conversation with a fellow PWN, is tremendously empowering. It reminds me that I am not insane. It also underscores for me that this disease is awful, and yet it is also manageable. Granted, I need to keep working to accept my limits, but I can be productive even with narcolepsy impeding me much of the time.

Tired and Troubled

Somehow, I have managed to let another month pass without posting. Writing about this crazy condition is vitally important to me, but the "basics" of my life have felt horribly overwhelming. I also think that either my narcolepsy is intensifying, or my amphetamine is diminishing in its impact. of course, there is actually no way to determine that. All I know is that I have continued to "cut back" what I do, and I still find it harder to do this lightened load - which I find horribly frustrating.

My school year is actually going well. I have been better about correcting and more prepared for my teaching. I am also doing a better job of limiting myself to my part-time hours, rather than spending excessive amounts of time at school (well outside of my contract time). That being said, the year has also been tremendously draining. Our teaching team was tremendously successful last year, but I think we are all feeling pressure to be "better." While I think we are doing that, we are putting stress on ourselves. We have also developed a new approach to homework. It works well for many of our students, but two groups are struggling. Our students with poor time management skills are not spacing out their work and turn in poorly done materials. On the other hand, our overachieving students have been trying to do two to three hours of homework each night. Our expectation is that student would spend two to three hours maximum per week. As a result, we faced a number of questions at conferences from parents and guardians. Thankfully, most of them accepted our explanation, but a few still felt like we should change what we are doing because their daughter or son was continuing to do two to three hours per night. I am empathetic, but fail to see how we are causing the problem.

The other thing contributing to my struggles is the bizarre course of events over the last two months in my house. Our September had more activities and events that I can ever remember us having. The worst weekend involved my wife getting me at school at 2:45 PM on a Friday. We spent the next three hours and thirteen minutes traveling to Duluth (a trip that should take about two hours). We arrived for a family wedding with two minutes to spare (literally). Then, we checked into the hotel and attended the reception. I then got up early the next morning to drive my daughter back to the Saint Paul for a voice lesson. It was her first lesson, and the directions given by the organization were flawed to say the least. We managed to arrive only two minutes late for the voice lesson, but the stress of it all buried me. My wife had stayed in Duluth. When she returned on Sunday, I was still recovering, but there was a tremendous amount of work that needed to be done. I pushed myself to do it, and I exploded at my family. Then, I got to school on Monday so exhausted that my team members sent me home. It has been rocky since then, but is finally beginning to level out.

In the midst of all of that, my relationship with Narcolepsy Network turned markedly sour. They let their web master go and cut those of us who were moderators from access to the primary tool that we used to help moderate the site. When I emailed to express my disappointment in the entire situation, I received two emails. One was heartfelt and personal, explaining that I was a valued resource. The other was a generic message to all of the current moderators, saying essentially the same thing. Unfortunately for Narcolepsy Network, they thought the first version of the generic message to me did not work, and thus they forwarded the template. Because of that I learned that they had sent the same message to two moderators who had done nothing for over six months. Both of those individuals had been alienated by the inaction and the rude comments of board members. I then wrote an even more terse email questioning how they could "value" my work when they clearly had no idea what moderators were active and which were not. The sad reality is that many of the board members STILL have not gone to the forums, even after the things that took place. As a result of it all, I have done little online posting - at Narcolepsy Network or on Facebook. I am even struggling to do work for my local support group (which I essentially help to run). I just hate the idea of spending hours working on things, only to have some uninformed baord member swoop in and yank it away. Much of my frustration with the Narcolepsy Network centers on a new website that the web master was developing. He had is essentially ready to go live last November, but the board would never approve it. I personally spent well over 20 to 30 hours writing and editing content for the site, but never heard anything from the board, particularly the ones who were supposed to be overseeing the site. The even more irritating part is that while the new site was constantly being labeled as "un-ready," the current Narcolepsy Network site was live and contained far more errors and inaccuracies than the "un-ready" site. Because the web master is my friend, I stuck with the process, hoping that we would eventually be given approval. Instead, they fired him. Certainly, there may be legitimate reasons for what they did, although I have serious doubts. Even more unbelievable is that after hearing nothing about my work for the site, or about the quality of my writing, I received praise from three board members and a couple of employees of Narcolepsy Network.

I still want to "help" others with narcolepsy, but my own struggles are making it hard. I am heading to the national convention for Narcolepsy Network at the end of this week. I do plan to touch base with one member of the board to see if I can learn more about everything that happened. At the same time I remain unimpressed by the things I continue to see from Narcolepsy Network. For instance, even though I have clearly stated that I am not "helping" them at this time, I am STILL receiving emails from the people planning the conference. Today's series of emails was wonderfully ironic. Since all of the forum moderators "resigned" (after we were cut off), the board is hoping to find "motivated moderators" for the forums. Someone came up with the line, "We want MM for NN" - with "MM" refering to "motivated moderators." Since my initials ARE MM, I was sorely tempted to respond to the email, "You had MM, but chose to get rid of him," but felt like it would be sour grapes. In the end, it drives me crazy that the one national organization for people with narcolepsy seems to be clueless when it comes to growing the organization and to helping the vast number of PWNs who are searching for a lifeline while they are online.

Missing Month

Somehow, I managed to write nothing in my blog for over a month. While the vacation did require some post-trip recovery, a number of other things contributed to my disappearance. First and foremost, the lovely world of Wii sucked me into it. My daughter's purchase of Animal Crossing has definitely been a curse and a blessing. I love the game and have been quite successful, but WOW does it suck up time. Beyond that, I have been attempting to get back into some type of rhythm because I have already experienced two weeks of teaching. Certainly, doing my best to prep for the start of school also ate up time. Our strategic planning process was fascinating this summer, but taxed me beyond belief. More than anything, I have had a difficult time maintaining a consistent level of energy. On that note, I must get into bed. I actually had three nights in a row at the end of last week when I took only one dose of Xyrem. Such situations will not get me back into a regular routine anytime soon.

Before I go, though, I need to acknowledge to things. One, I have had a difficult and trying weekend due to moronic decisions made by the board of Narcolepsy Network. I will be attending their national conference in October, but sadly my relationship with them is likely ending. I have no doubt that I will blog about that soon. More importantly, I made a new friend on Facebook today. She actually knew me from Narcolepsy Network's forums, but we had never exchanged direct messages before. She shared some wonderful compliments with me, particularly that my blog had helped her when she was initially diagnosed. Although I had been working up the energy to get back to my writing, that interaction spurred me to post this. I love how PWNs can do so much for each other in such simple ways.

Happy Homecoming

We had a fantastic day on the road today. We experienced little heavy traffic, avoided any and all foul weather, and got from Hammond, IN to Saint Paul in LESS than eight hours. That includes two pit stops (one of which was also a re-fueling stop) and an hour long lunch at the Norske Nook in Osseo, WI. My wife did a bulk of the driving, but I also took a shift. While it taxed me, I handled the situations and my mood better than I did yesterday.

I drove from just across the Wisconsin and Illinois border until the first Dells exit. It turned out to be more than we had planned on me driving, but part of that was how frazzled I was at the end. Most of the stretch was good, but traffic got boggy around Madison (which frustrated me again). I also struggled with the argument that my wife and daughter had around the same time. My daughter is amazing, but she is also twelve (soon to be thirteen). She has a HUGE heart, but is prone to defensiveness whenever she is forced to confront uncomfortable issues. My wife was suggesting that our daughter start practicing her trombone soon. That did not go over well, and the ensuing conflict resulted in our daughter (once again) being disrespectful to my wife. I did not explode, but I wanted to do so. I fumed about it, though, which made my wife nervous. To her credit, she gave me space (and encouraged our daughter to do the same). My wife also confronted our daughter about the disrespectful language - in a calm and appropriate way. While I did wind up pushing 20 miles farther than I had initially planned (due to a cruddy set of circumstances - poor lane changing and an unhelpful exit configuration), we all stayed grounded.

Other than that one moment, the rest of the trip was fairly low key. All three of us were thrilled to get home, but also had a blast on vacation. I truly can't remember another trip that ended this well. My wife and I both got some work done tonight, and we created a rough plan for the week. She needs to get a presentation planned, so she is likely going into her office tomorrow even though she took the day "off." I am hoping to get one or two small things done around the house, but I am making a conscious effort to keep Monday and Tuesday light because I know I need to recover from the trip, particularly the realities of spending two long days in the car. Our daughter was scheming plans for herself three days ago. She even went to a friend's house tonight. I am looking forward to spend a least two or three days with her during the next two weeks. It should be fun to "goof off" with her even as I get myself into school mode.

Travel Tension

On the whole, today has been great, but as was the case on the way down to Tennessee, narcolepsy did choose some choice moments to rear its ugly head. In an attempt to create a smooth departure this morning, we all packed last night. Ironically, that effort paid off for us (those things usually backfire in some way). We were on the road by 6:25 AM - a significant improvement from a week ago Friday (when our 6 AM departure turned into 8 AM). My wife was on edge as we left, but I knew that she was definitely sick still, and her angst quickly passed.

The problem, though, was that due to my wife's illness I needed to drive more than I had on the way down. I took my first driving shift right after we entered Kentucky. I managed to get us passed Lexington, which was over 100 miles of our trip. I drove for nearly an hour and a half. Unfortunately, I found myself in heavier traffic toward the end of that time (no doubt due to passing through Lexington). Still, I handled things well, but I could feel some tension building. My wife definitely gets worried as I begin to fade behind the wheel. Still, I was pleased that I drove that far and helped out that much.

Because it was so early, we continued to push on. My wife drove us into Indiana. We finally stopped for lunch at this great little restaurant in Scottsburg (Jeeves & Company). Our lunch was wonderful, and I took my second dose of amphetamine right after we ate. My wife definitely needed me to drive again. I knew that I was already exhausted, even with the stimulant, but felt I had no other choice. Thus, I got behind the wheel and knew that I would be fine in terms of safety. The problem was that driving would take all of my energy. My wife dozed during some of the time, but she woke up as we began approaching Indianapolis. Like Lexington, traffic began to get dicey as we approached the metropolitan area. Finally, a truck cut into the left lane (at 65 mph) when the car in front of me and I were both moving at 80 mph. Needless to say, I was furious. I then drove through the next 30 to 40 miles in rapid, lane-shifting traffic. I wanted to get us around Indianapolis before switching. But, the speed and my bad mood made my wife more and more anxious.

When we finally reached an exit that would allow us to switch, I was attempting to explain my awful mood to my wife. Sadly, the gas station we wanted to reach was not immediately at the exit, AND the bottom of the ramp was incredibly confusing. I did make the correct decision, but had no way to know that at the time. Because every ounce of energy that I had was going into keeping the car on the road safely, I derided myself for the rotten signage. This only upset my wife more. After the mile had almost passed, we were approaching a different interstate and could not see the gas station. Because I was so far gone, I cut my wife off as she was attempting to "help" me. I plead with her to say nothing and to let me figure out how to find the gas station. Seconds later, I spotted it just passed the other interstate, but she also saw it and chose to let me know where it was. That definitely sent me into a tailspin.

I got us to the station, and we snapped at each other about the situation. We soon reconciled, but as I got out right after the initial exchange, I was literally shaking aas I was pumping the gas. I had nothing left from the driving. In fact, I nearly exploded when the pump failed to print my receipt. Fortunately, my wife had already apologized to me. I managed to walk (or stomp) inside and nicely ask for a copy. I then apologized to my wife and again attempted to explain how hard such a situation is for me. It drives me nuts that my energy is so limited in moments like that. I truly did not have the ability to interact with her (or myself) civilly because I needed all of my mental accuity to keep us safe in the car. That is crazy, but it is also reality.

Fortunately, my wife and I are exceptional at sharing, listening, and forgiving. I know that she meant well, and she knows that I truly did not try to upset her. She also appreciates that I did much more of the driving today. She still did the majority, but I did drive for over 3 hours and handled over 200 of our miles. Narcolepsy will certainly continue to be a bane - in my travels, in my marriage, in my life. But, I must simply continue to accept what it gives me and make the best of each day. Gratefully, we got to our hotel by 3 PM and have had a slow evening to gather strength for tomorrow. We are all excited to get home. I hope that tomorrow goes well and that my narcolepsy lets me have enough strength to drive and to be kind even when the roads are tense.

Craft Craze

I had an excellent time today going to look at crafters. Unfortunately, my wife was too ill to join us, so my daughter and I ventured out alone. We needed to exchange a shirt at the aquarium first, which was also an excuse for my daughter to get an awesome funnel cake (it looked like a pound of powdered sugar!). Then, we headed east for the eight mile artisan loop. Since it was hot, we knew that we could not go to many places, but we did check out a few shops.

The woodwork and art that we found blew my mind. I am glad that we made the trip because I will now push harder to make it a priority the next time that we come here. Gatlinburg has amazing talent in this eight mile loop. We did make a few purchases, but I was tempted to get far more. Wisely, I realized that my wife would need to okay the larger purchases. It simply means that we need to return here again.

The best part of the day, though, was simply getting out. My sinuses definitely seemed to be better today. I felt good being more alert and having the chance to connect with my daughter. I continue to worry that narcolepsy will prevent me from knowing as well as I might. Gratefully, days like today remind me that I can find windows. I am excited to head home, but feel like I had a great vacation inspite of my medical woes. We have already packed most of our stuff, allowing us to plan for a 6 AM departure. I hope that I can be ready since I was the delay on both days of our driving down here. Tomorrow is definitely the "longer" day, but we should hit our worst stretch (Pigeon Forge - 5 miles in one hour) before anyone else is actually awake. We will stay in northern Indiana again, but booked a hotel slightly closer to Chicago. I like that I am ending this trip on an upbeat note. That has not been my previous experience very often.

Slow Startup

Today is our last day in Tennessee. We will rise early tomorrow and hit the road. While I am not looking forward to two days in a car, I am looking forward to getting back home. I feel good that I still have two weeks before I am back at school. I have oodles of things to do - at home and for school, but I will continue to approach them at the pace that I can handle. Today definitely feels similar to that. My wife went on a driving loop last night by herself. She enjoyed it immensely, but came home even sicker than she was. Thus, I am the only one up this morning. Hopefully, we will still try to visit some of the craft shops today, but I love that we can have such a relaxed start to our "final day." Far too often, a day like this is treated frenetically, cramming in activities for each waking moment. Instead, we will take in what we can and simply appreciate the chance to spend time together.

I find myself grateful for the many opportunities to slow down my life and expectations. My brain continues to push me, but I am getting better at letting go. I am even able to appreciate the fleeting moments when I do achieve a level of balance. Those moments are not nearly as frequent as I would like, but the fact that success brings joy rather than regret is a huge improvement. For years, a moment of serenity would bring angst rather than relief. I would berate myself for my inability to "feel serene" more often - how screwed up is that? Thus, I am highly content to lounge this morning, at peace with my upbeat outlook.

That said, I do need to find a bit more structure to my days when I get back home. The start of school is still three weeks away, but I need to begin adapting my schedule and routine now, since I know that a radical shift will not sit well with my brain or physical health. I also need to find a physical routine. The hiking and rafting has been great, but my body hurts all over as a result. More than anything else, I need to strengthen my knees. They are hurting constantly these days. I must spend some time over the next three weeks to get them ready for standing frequently during the school day. If I don't, it will be a LONG year. I find juggling exercise, my family, my sanity, and my job one of the most frustrating aspects of narcolepsy. All of them take energy from me, but all of them are vitally necessary.

Internet Interruption

I love that I am constantly learning new things about myself. While a portion of that statement is facetious, I do like that I am open enough to recognize important factors about my mental and physical health. So, we are on vacation. Gatlinburg has been great, but my sinuses has not. I am also furious that my resort DOES offer an internet connection, but for a fee. I realized this after returning from McDonald's on Sunday. My rage only increased when I learned that the resort's internet is provided by Wayport. While Wayport has been around for a while, apparently the company is now owned by AT&T. The irony is that I am supposed to be able to connect to AT&T wifi because of my own internet connection at home. In fact, I used the Wayport connection at McDonald's! I finally caved in and paid for 24 hours on our room connection. I needed to do that.

My health woes have made for a long week, but it has also been hard because I don't do well when I have "unstructured" time. We have done some hiking, gone white water rafting, and visited the Aquarium of the Smokies. Those activities have been awesome. Unfortunately, those things drained me (because I have narcolepsy) and left me sitting around our townhouse at the resort. When I don't have ways to distract myself, I tend to get stuck in my own head. To avoid that I have watched a ridiculous amount of TV. I would have done far more productive things had I had an internet connection, but that was not possible. I also knew that trying to DO other things would be a disaster, since my limited excursions have left me wiped out. That might be the most frustrating aspect of this. This trip is the first long one that we have taken since I have begun to figure out how to live effectively with my narcolepsy. Unfortunately, I was not prepared for it. The lack of the internet connection, coupled with how much two LONG days in the car took out of me, has made it difficult for me to be upbeat. I also know that I am bring down the moods of my wife and my daughter. We are having fun, but my limited participation certainly impacts them.

I am now in hour 30 of a killer sinus headache too. It improves at times, but on the whole, the dull and constant pain in my left temple is getting old (to say the least). I skipped the hike this morning in hopes that I would feel better, but it made no difference. I am also afraid that I will get worse when we spend two days in the car driving home. Hopefully, tomorrow will be a good day. We plan to visit some of the shops on the craft circle - an eight mile loop of various artisans. It should be a blast, but all of us are under the weather. We certainly will not push ourselves, but it is definitely a burden on my wife. She clearly has a cold, but is trying to pick up my slack. I am doing my best to stay positive and engage with my wife and daughter, but there is only so much that my body can give. I will attempt to keep smiling and give everything that I can!

Wild (weird) Week

I am struggling to believe that I went aq week without posting. Sadly, that is in fact the reality, though. I found myself overwhelmed by meetings and events for most of the past week, and on Friday morning we departed on our trip. The strategic planning meetings on Monday and Tuesday were incredible, but they overwhelmed my body on Wednesday. I did still manage to get some housework and yard work done, though. Unfortunately, that effort coupled with more meetings and errands on Thursday left me FAR behind in my trip preparations. I stumbled out of our office on Thursday night around 11 PM, took one dose of Xyrem, and knew that I would need to get up as early as possible without a second one because I still had far too much to do. It was also the second night in a row with a solo dose.

I did manage to get up between 4:30 and 5 AM, but I still delayed our departure by nearly an hour and a half. Fortunately, my wife and daughter remained calm. I did do some driving (about an hour and a half in the middle of that leg), but it wiped me out. We also got stuck in ridiculous traffic around Chicago. Being the car so long and the fact that I was baking on my side of the car left me with a horrific headache. Fortunately, my wife and daughter still went and enjoyed the dunes on Lake Michigan. Unfortunately, I was unable to awaken for my second dose that night, thus it was three nights with only one dose of Xyrem. The trip from northern Indiana to Tennessee was even longer than Friday's drive. Again, my wife did a bulk of the driving, but I again took a 1.5 hour section in the middle. I was fading badly at the end, and we wound up snapping at each other, but reconciled over lunch. The worst part of the trip came at the end. After 550 miles of driving, we spent nearly two hours covering the final 30 miles because traffic into Pigeon Forge and Gatlinburg, TN is so awful. Again, I was shot and baking.

I did get an okay sleep last night, but am also frustrated because our resort only has ONE internet computer available for guests. At some of their other resorts, they at least make wifi available in the lobby of the clubhouse, but at this one they CHARGE for it! So, I am sitting in the parking lot of a McDonald's using my new Qwest WiFi (available through AT&T). Of course, it took forever to make the connection work right, so I am only going to get a couple of chances to write on my blog. Worse, I truly had hoped to do a little work while I was here. Hopefully, I will work something out. I certainly plan to enjoy our vacation, but this is the first long trip that we have taken with me trying to cope honestly with my narcolepsy. I functioned poorly today (at best). We are going hiking tomorrow and rafting on Tuesday. While I am excited about those activities, I am also worried that I will be unable to do much else. I know that will frustrate my wife and daughter. We will see what tomorrow brings, though. I need to run now. I need to get gas for our car and to get groceries.

Sleepy Sunday

The day was definitely low key at my house today. My daughter had a friend here over night, and the two of them had fun creating a movie on my MacBook Pro. They also played air hockey, goofed around, and enjoyed the Wii. My wife spent most of the day resting, but is getting to some of the chores now. She is definitely feeling some pressure because we are leaving on vacation this Thursday. Thus, we need to get the house cleaned and have a number of ducks in a row before we hop in the car. Not only is she thinking about the work at home, but also she needs to get a number of things done at her office. Plus, her husband with narcolepsy is not a big help in crunch times - oops!

I spent the day puttering, but I did get some things done. I washed some dishes and finally cleaned off our dining room table. I am still hoping to get a couple more things done before I head to bed. More than anything, though, I used the day to recharge a bit. I tried to let go of my worries, appreciating the things that I did get done. Hopefully, my lack of fretting will continue throughout the week, allowing me to maintain my energy and to accomplish a few more tasks in the process. I definitely need for that to happen, but sometimes my body and my narcolepsy make their own plans. It does not help that I have two six hour meetings on Monday and Tuesday up at school. In the end, though, things will be what they are, and we will still leave on our vacation regardless. Life is funny that way.

Sluggish, but Sane

I chose not to push myself at all today. While I desperately want to be more productive, I knew after yesterday that I would be a fool to drive myself today. Thus, I got up slowly and thoroughly enjoyed the long "talk time" with my wife. It amazes me each week how wonderful it is just to spend time in honest conversation with her. I also know that those exchanges are a huge part of why my love for her deepens every day. After we finished, I attempted the crossword and finished the sudoku in the StarTribune. Then, I played some Animal Crossing, which is rapidly becoming my favorite mindless past time.

My wife asked me today how I can enjoy it because there is no "objective" to the game. But, I think that is what I like about it. Before my narcolepsy became intolerable, I enjoyed fishing. What was good about it for me is that I could sit and do nothing, but not get stressed out. Ordinarily, lounging causes me immense amounts of stress because my brain wants me to do things. In fact, it uses quiet times to inundate me with a myriad of unfinished tasks, but fishing WAS something. I could be focused on the process of casting and retrieving, blocking out the normal litany from my mind. Animal Crossing definitely fills a similar role, partly because I spend a decent amount of my time in the game fishing. I will need to be careful of my time with this one, but it is a good way for me to use my downtime in a restful way.

I did manage to help clean our kitchen. I even put away a few of the piles from our dining room table. Hopefully, I will have a bit more energy tomorrow. The most important aspect of the day, though, is that I am at peace with what I did and what I left undone. Much of my stress earlier this week centered on what I have not finished yet for this coming school year. The reality is that I still have time to get things done, and I am a part of an amazing team. We made significant strides on Thursday and Friday. I am willing to guess we will have even more success on this coming Thursday. I need to remember that I have already been more efficient this summer than I have been at any point in my teaching career. I still want to do more, and I will. But, I deserve congratulations for the work I have done thus far. Plus, it will do me no good to make myself sick well before the school year begins. Summer has to be about me regaining energy so I can be effective during the school year. I truly do not know what tomorrow will bring, but I will do my best to get one or two things done, and I will make sure that I continue to take the breaks that my body needs to rebuild my reserves.

Pulsating Pain

My head feels like it is in a vice. The headache started around 3 PM today, and it is progressively building. Somehow, I managed to go get my daughter around 4 PM. Then, my wife, my daughter, three of my daughter's friends, and I went to a play at my school. Thankfully, my wife drove. I survived the play and even managed to laugh, but the pain is making it difficult to see at the moment. As always the pain is completely centered in my sinuses. I have no doubt that something rotten is happening in there. My ENT's office never did call with the culture results, but I am sure that they were negative.

I would guess that this headache is my body's signal to me that I have pushed far too hard at the end of this week. I have not rested much, even on my "off days," and for the past two days, I have had intense three hour meetings. My colleagues and I have been planning, which has been a blast. Because we are making significant progress, I have no doubt that this coming school year will be even better than last year. That said, though, I overtaxed my body during these past two days because I wanted to get even more done for school. Hopefully, a night of sleep and an extremely low key weekend will allow me to recuperate, so I can work toward a healthier balance next week. Of course, I have two all day meetings on Monday and Tuesday, a evening gathering on Wednesday, another team planning meeting on Thursday morning, and a road trip to Tennessee immediately after that Thursday meeting. I do not have high hopes for my body "settling" within the next week. Oh well, this too is just another joy of narcolepsy. I do get better at rolling with punches like this one (but I still don't like them).

Doctor Downer (and difficult decision)

Seven weeks ago, I got a letter from my sleep doctor's office. Bluntly, it told me I better get in to see him, or they would stop filling my prescriptions. I called immediately, and today was the earliest appointment available. Given the tone of the letter, I checked if an appointment today would suffice. The individual assured me that things would be fine, as long as I had this appointment on the books. And, she was right. I got my July prescriptions in the mail, and my Xyrem was renewed without any hassle. Now, I have been wondering what my doctor would say, since I was basically 5 months late in coming into my appointment. Also, given my current state of mind, I was not completely sure what I would hope to discuss with him. I am handling things well, but I certainly would be open to exploring a different med, or looking at how my days tend to ebb and flow.

Invariably, I was ten minutes late to my appointment. A nice physician's assistant brought me back and did the initial intake. I told her that things were about as good as I thought they could be. I did not go into significant detail because I figured that I would have to say things twice. My BP was a tad high 130/90, and my weight still remains far too high. Their scale had me at 198, and I was 195 at home this morning (wearing fewer items of clothing). I did mention that I might want to discuss a different med, but also noted that NuVigil might not be the right direction since I had a terrible time with Provigil. I mentioned the relative success of my two medication holidays. She then left the room to let my doctor know that I was ready.

She then returned less than 5 minutes later. My sleep doctor felt that "as long as things are working, we should not switch meds." He also told her that unless I "needed" to see him, I was free to go. Now, I debated briefly about asking to stay so I could at least see him, but quickly decided that there would be little purpose in doing that. After all, I was still unsure as to what I hoped to discuss with him, and I was late for the appointment. So, I gathered my things and took my leave of the office. In the ultimate irony, the physician's assistant ask ME when I was supposed to return. I informed her that I had stretched my previous six month check-in by five months. I then said six months might make sense. And, as happened the LAST time I was in that office, the receptionist informed me that they do not schedule February appointments now. I need to call in November.

Of course, my PWN brain managed to put off that previous November phone call until I got the stern letter. I also was a tad flabbergasted that after the nature of that correspondence, I was not even SEEN by my doctor. I am sure that the physician's assistant is a sharp young woman, but she is not a specialist licensed to practice sleep medicine. It also does not help my mood that I did have time when she left the room to flip through the clinic's latest newsletter. While they "might" have cover Dr. Mignot's ground-breaking discovery in their Spring newsletter, the Summer one that was in the room had NOTHING about narcolepsy in it. It had lots on obstructive sleep apnea and lots on restless leg syndrome, but nothing about this wacko disease of mine. Of course, the clinic only employs pulmonary doctors, so I should not expect much. Except I do! If a clinic is supposed to treat narcolepsy, shouldn't they know something about it? Now, my doctor is a good guy, and he does know a decent amount about narcolepsy, but I think today is strong indication that I need to find a new doctor/clinic. Unfortunately, there are not other options, at least not good ones. Most other places in the Twin Cities are also pulmonary clinics. The one that is not tends to have a ridiculously narrow view of narcolepsy, meaning that they might actually tell me that I do NOT have narcolepsy. The added complication is that if I go somewhere else, they might be worse and could possible change my drugs in ways that make it impossible for me to work.

Sadly, I don't feel like I have any good choices here. I can stay where I am, continue to figure out on my own (and with my many PWN friends) how to handle this condition, and ensure that I can at least receive drugs that seem to work for me. The downside is that I might not EVER talk to my "doctor" again. And, if I do "need" to see him, will he honestly have genuine suggestions for me? Of course, leaving presents the possibility of finding a great doctor who can help me better understand myself and my disease, but that does not feel likely. In fact, I am honestly more worried that my current options (other than my actual clinic and doctor) would likely do more harm than good. The idea of having to re-tell my story (or even to be re-tested) while possibly being disparaged because my diagnosis is narcolepsy without cataplexy (or possibly mild/abnormal cataplexy which the guidelines still call "without cataplexy"). In fact, if that happened, it might be far more disrupting than just the mental stress. I might lose the meds I have, and if I can't work, I would also likely lose the small chance that I would have of a disability situation (if I don't have "narcolepsy," I have some condition of unknown etiology which would mean in legal terms that people think I am lazy).

Fortunately, I am not freaking out over this, but I do need to ponder a next step. I am not sure where to start. I know that there is an excellent neurologist in Saint Cloud, but have been remiss to try to see him because I doubt that insurance will cover it. And, I have no idea of how I would prove to my insurance company that I can't get proper care in the Twin Cities when many other PWNs "do." I actually know that they don't, but we are such a small population that it is easy to make blanket statements, particularly for large companies. Perhaps I am most frustrated by the fact that this brief stop in my doctor's office has added yet one more level of stress to my already growing anxiety of late. I truly do not have the time or the energy to commit to the process of searching for a new doctor. I also know that I hate the idea of "popping" into this office once or twice a year to simply pretend that my doctor checked on me.

Meandering Moodiness

While today was slightly better than yesterday, I have yet to find any traction this week. That said, I did enjoy my day. My daughter and I continued to enjoy her new Wii game. Animal Crossing is ridiculously silly. You essentially fish, catch bugs, run errands for your neighbors, and dig up fossils. At the same time, it is hilarious. I must admit that the best part is spending time with my daughter. Although we did manage to limit the Wii time, it was still past noon when we "finished." We then went to lunch and took in a movie together. I do believe that things went well, but I still worry that I am not connecting with her enough.

I did manage to do one thing for my wife today. I got groceries, which we desperately needed. At the driving in the afternoon, I was a tad worried about driving again, but I rested for an hour before going shopping. Still, the trip to the store finished me for the night. I was able to let go of my anxiety over the things that I have not even started yet for my meeting in the morning. I think I can get a couple things done when I wake up, but I doubt I will have it all finished. Hopefully, my colleagues will understand and forgive me. I also have an appointment with my sleep doctor tomorrow. I need to pull together some questions for him. The appointment should go fine, but I also wish I had a firmer grasp on my current mental state. I am not sure how well my meds are working, but worry about trying to ask for anonther stimulant. We will see.

This needs to be short tonight because I need to get to sleep. I am painfully aware that my own inability to re-establish any sense of a schedule has been reeking havoc with my entire state of being - mentally, physically, emotionally. The good news is that I still have a week and a half of July. Then, I will get three weeks of August before school starts. That is a tremendous amount of time, but I must start moving in a better direction.

Deepening Depression

Today was hard. I had an okay day, but I truly felt paralyzed when it came to doing any work. There is so much on my plate, and I have no idea where to begin. Confusing the situation is the sensation that I have not done much just for me recently. Many of my actions have "helped" me and others, but I occasionally have this burgeoning sensation of selfishness. I feel like I need to take a few days and just do things for me - read books that I want to read, watch movies that I want to watch, and let everything else go. Unfortunately, such an option is as unrealistic as my desire to clean the entire house in a day. One, I cannot afford for me to take those days because I need to help my wife and I need to get ready for the school year. Two, even if I COULD take the days, my brain would not let me. I would still not be able to focus even if I was doing things just for me. Instead, I would question whether that "me time" was warranted. If that sounds crazy, I can assure you, it also feels crazy.

I know that my continued sleepiness is a major factor in my indecision. When I am this rundown, I do not do well with decision-making. Also contributing to my consternation today was the cool and rainy nature of the day. The atmospheric pressure was literally weighing on my mind. Sadly, tomorrow may be more of the same. I also MUST do a better job of putting some structure to my day. Without any, I meander all of the place. It is imperative that I make a daily schedule a habit for myself. By doing so, I will be able to manage my day and my sanity with far greater balance.

Of course, all of these thoughts must be framed within the reality of my narcolepsy. No matter how good I get at setting a schedule, or accepting the weather, or handling difficult days, in the end, I will always feel tired even with my medication, even with the best night of sleep that I can get. That is the hard truth. I also know that I will invariably encounter "off days" because of the nature of narcolepsy. It is impossible to believe that I will be able to accept the constant sleepiness that I will have every day for the rest of my life. Eventually, my frustrations will build to the point that I need to rail against my disease for a time. I do hope that I will spread out those rotten days at wider and wider intervals, but I must accept that they will never go away. I hate that, but it is my life.

To end on an upbeat note, I did have fun playing a new game on our Wii today. My daughter bought Animal Crossing: City Folk. The game is super cute, and she and I both have a character in the town. While I must be careful (because this type of adventure game could consume me), I loved playing and watching the game with her. It was a silly and light-hearted moment for the two of us. I am sure we will play a little tomorrow too, but we are also going to have an adventure. Hopefully, that excurision will provide some fun for the two of us AND some structure for me.

Trouble Tracking

Today has been odd. I know that I got things done, but I just don't feel like I did much. I had trouble getting going this morning. Some of that is residue from this weekend - I know that Mondays are hard when I have pushed during the weekend (and that definitely happened between the anxiety and the excitement of the play plus the physical exertion of striking the set). I also know that some of my discomfort today is connected to the numerous things that I feel looming in my life. Whether it is work for school or the multitude of house projects, there is much to do and the time is slowly dwindling. The hardest part is knowing that I probably can't get to everything that I would like to do. Well, that and the fact that I want to finish everything within a day. I do find it funny that my baseline is still, "I should be able to do that by the end of the day." At least I know it is ridiculous, but I still experience some emotional push back from my subconscious.

I did manage to take care of a few things for school today. Mostly, I got our writing curriculum books to two of my three colleagues. Hopefully, I will take care of the third person before the end of the week. I also did a little shopping for myself, and I had a great conversation with a couple of friends. While those interactions were unplanned, there were wonderfully refreshing. I just wish that I wouldn't do my mental calculus after them (I just spent 30 minutes talking to that person, which means I can only get to this now...). Just one more aspect of my anxiety and my narcolepsy having a little party in my brain. More than anything, today is reminding me that I need to set schedules for my days like this. As nice as it is that my daughter does not have rehearsal every afternoon, that event forced a small amount of scheduling into my days. Now, things are too open, and I run the risk of that paralyzing me. Hopefully, tomorrow will feel more productive. I also have some time tonight that I can use to my advantage.

Finally, I need to mention that I did advocate for myself today. My wife just scheduled her conference for October. While we knew that her annual medical writers conference is in direct conflict of my Narcolepsy Network, we have already planned that we are both going to attend our conferences. However, when she mentioned signing up for hers, I then asked if we could get things in order for my conference. I definitely hope that we can do that soon. While it is not much, knowing that I have a flight to Jacksonville and a hotel room will take some pressure off of the many things on my mind. Silly, yes, but real.

Slow Sunday

Everyone got up late in our house today. As always, I was the first one up - Xyrem in a midnight and 3 AM means I am awake at 8-8:30 am. Today was no different. Of course, the physical exertion of cleaning up last night and the emotional strain of watching my daughter left me completely washed out. My wife finally arose around 10:45, and we got my daughter up at 11:15. I have no doubt that the stress of the play drained both of them. While my daughter loved the entire experience, she expended ridiculous amounts of energy, especially in the last seven days. As Alice, she was literally on the stage every moment of the play, and she gave to the audience for the full 95-100 minutes both nights. For my poor wife, the drain can primarily from insane nervous energy. I have seen my wife stressed about her own presentations, but that is nothing compared to her fretting over our daughter's performance. Since our daughter has definitely been bitten by the performance bug, I am hoping that my wife's anxiety will start to settle down.

Once we got up, we did nothing. I don't think any of us had much motivation today. We did decide to check out Harry Potter and the Half-Blood Prince. We loved the film, but even that trip to the film depleted the minimal energy that any of us had. I got home and felt like collapsing. Thankfully, my wife was able to let go of her own concerns about getting work done. I definitely would have found it more difficult to shut down tonight had my wife tried to push herself to do more work, partly because she has done a bulk of the work that was required from parents for the play. I sincerely hope that I can get back into a better groove in this coming week. I certainly have done a decent job, but I want to find a healthier balance in my work efforts and my exercising.

Although today was incredibly low key, it is wonderful to realize that we were able to have a day like this as a family. Far too often, we have isolated on days like this one. Or, one or two of us will be frenetic, while someone else shuts down. Rather than begrudging each other, we celebrated our fatigue together. As the PWN in the family, I truly appreciate that. As I have said many times, my wife and my daughter are the two people who I still worry about disappointing. Thus, days like today can be dangerous for me. Instead, today was heavenly.

Magical Madness

The hour is late. We just got home from the set strike from my daughter's play. Technically, my wife and I got home just now from set strike; my daughter just got home from the cast party. Today was an insane whirlwind of activity. After having the first full night of Xyrem after three days of half doses, I was slow to rise this morning. I eventually got up and let my wife and daughter sleep. They were both wiped out after the stress and the exultation of yesterday's performance. I played a little on the Wii, did the crossword, and got a couple of things together for my MOONS-MN gathering. Then, when my wife did wake up, we had our weekly "talk time."

I truly enjoy our weekly ritual, but today was extra special because we basically talk about how much we both enjoyed seeing our daughter perform. Soon, though, I needed to get ready for MOONS. I got to the MOONS meeting early because we had to use a different room this time. Park Nicollet Methodist Hospital was doing maintenance work in our usual room. The new spot was tough to find. I did try to put up some signs, but then stood near the entrance to the hospital to make sure people knew where to go. I also wound up going up and down the stairs repeatedly because our usual meeting room is down one floor. Thankfully, I spotted most folks and got them to the room. The afternoon was a blast because we had 11 people there simply sharing their stories and chatting about life with narcolepsy. One of the best things was the age range. We spanned from 21 up to 80. I have high hopes for the direction that MOONS continues to take.

After the meeting broke up, I had to hop back in my car to get home. Traffic was rotten, so I got home at 5:05. Fifteen minutes later we were in the car heading for my daughter's show. My wife and I helped clean the floor before the performance because there was still popcorn crumbs in many spots. Then we did other odd jobs. The performance was even better tonight, and our daughter was radiant yet again. I am thrilled that this was such a good experience for her. Finally, our daughter got to hang out with her friends on the cast, while my wife and I helped get everything in order.

Although it is late, and I will definitely pay for the energy I exerted today, everything was worth it. The time with my wife and the MOONS meeting would have made for an awesome day if only one had happened. But the fact that both took place today, AND I got to see my daughter light up the stage yet again, makes this a day to remember. Crazy and chaotic though it was, the day was glorious.

Properly Proud Papa

I rarely post twice in the same day, but I needed to write this immediately upon returning home. My daughter was amazing. The entire show came together phenomenally well, but my daughter's performance took my breath away. Her acting already has impressed me in the past, but what she did on stage tonight blew my mind. She stayed in character the entire time, even though she is on the stage the entire time. She even created some ad lib when one of the performers was late to the stage. If I had only seen her act tonight, I would be walking on a cloud for weeks. She was that good! And, the fact that the entire cast pulled together as they did tonight is a true testament to the hard work these kids have all put into the show.

What I was completely unprepared for, though, was the stunning beauty of my daughter's voice. I have heard my daughter sing before. I have even heard her sing the songs to this show. But, my daughter apparently has a WHOLE different gear for "performing." She sang with power, grace, style, and energy tonight. Her range is impressive, particularly considering her lack of any formal voice training. Even more impressive, though, was the richness and strength in her tone. She injected tremendous emotion into her words. Her big solos are in the second half of the show, after spending a full hour under the lights speaking and performing non-stop during Act I. The fact that she could still speak is incredible, but her first song in particular literally made people cry it was so touching. And while the lyrics are a small piece of that, far more of the tenderness was due to the way my daughter sang it. I am awed by her.

Paying Penance

In the cosmic ebb and flow of my life, I knew a day like today was coming soon. Last night, for the third night in a row, I did not make it to my bed until "today" (meaning post-midnight). While it is summer, and I do not have looming deadlines, I can ill afford to get wildly off my regular schedule. The transition back would take me one to two weeks at least. That said, I am then faced with getting up after only one dose of Xyrem. That prospect is also rotten because I eventually get overly run down and cranky. I finally decided last night that I would actually do my second dose of Xyrem at 4 AM and would then be way off my regular routine.

Instead, I slept through the alarm until 5:15 AM. Since today is the opening show in my daughter's play, I figured I'd better not risk sleeping the entire morning away. Thus, I rose at 5:30 AM after only the one dose of Xyrem. Needless to say, I feel terrible today. My body is furious that I have not gotten nearly enough sleep of late. I also am feeling bizarre pains in the strangest of places because I have done little exercising this past week. I am so "off" that I actually had a sleep attack mid-morning while trying to do some work. I know it is bad when my sleep attacks are strong than 30 mg of amphetamine less than 2 hours after I have taken it.

Fortunately, the day has been extremely low key at our home. I had hoped to run some errands, but I realized mid-morning that it would be unwise for me to try. Instead, I simply plodded my way through some work for school. It was nothing more than data entry, but it will help us throughout the year. One of my greatest lessons from my narcolepsy is to accept the situation at hand and then to allow myself to adjust to it. Even a year ago, my day going sour would have derailed me completely. That would be bad on any day, but if I had lost my cool today, it would have been grossly unfair to my daughter (and my wife).

Underlying the normal zaniness of our home, a subtle (yet overt) pressure has been building all week. Tonight at 7 PM CDT, my daughter will perform with other children from her school - Wonderland! The Musical Misadventures of a Girl Named Alice. Given my daughter's personality, the tension would have been mounting even if her role was nothing more than a chorus member, but she is actually Alice in the show. She definitely has worked hard and is super excited, but her butterflies are likely the size of Mothra right now. AND, her mother (my wife) might be even more nervous. I have no doubt that she will be fantastic, but I also know that my daughter is like me, so she will dwell on every missed line and bad note. Our daugher will be on the stage for the entire performance, has approximately 300 lines, and sing the majority of two of the songs as solos. In other words, she is working her tail off the entire time. Having run lines with her, I know she will be spectacular and the show will be a hit.

But, even "knowing" that, it would have been unwise for me to risk coming unglued today. Beyond working on my few minor items, I tried to help my wife and to support my daughter. I also worked to keep the mood light. I suggested that we watch Shakespeare in Love. Not only is an "actor's movie" with all of the behind the scenes silliness, but also it is a great reminder that "it all works out in the end." As Henslowe says, we don't know why or how - it's a mystery. I think it is important for my daugher to have that in mind for tonight. The cast has first graders through graduated eighth graders in it. They also have NEVER had an uninterrupted run through of the play - the music director is a tad flaky. When the first "complete" run is on opening night, it can be unnerving. But I am hoping that my daughter can remember that as long as they smile, laugh, sing, and do most of their lines in order, everyone will adore the show.

My final regret in all of this, though, is that part of me wishes that I did not have to go tonight. Truth be told, I am too tired to appreciate it. Nevertheless, I would not miss this for the world. My daughter is far too important to me to let my narcolepsy get in the way. At the same time, I dearly hope that I will be able to forgive myself if I fall asleep at her show. I don't think that will happen, but anything is possible, especially the way I am feeling today. And, even as I write that I realize that I have yet to take my second dose of amphetamine for today - oops! I LOVE this crazy condition. I need to get those meds right now, but my error may just be the thing that keeps me awake through the entire show.

Fighting Frustration

I have not slept well (or much) the last two nights. While that is NOT a good thing, my mood today is surprisingly upbeat. I know a piece of that is that I had a good meeting with my psychiatrist today. He is quite down-to-earth, but has also challenged me in the past to be kinder to myself. I think he easily saw today that I am definitely making progress in that regard. I also know that in that same vein, I am accepting that I have been up far too late the last two nights. Thus, the things that I accomplish today will be "gravy." I have to take that approach. I needed to stay up two nights ago to get some things done for MOONS-MN. Last night, the priority was getting the kitchen clean. That I did get those things done is a huge step for me. Hopefully, I will begin to keep such efforts within the frame work of "normal" hours for me, but it is also good that I am making strides in such areas.

Far too often, I get completely lost in "unstructured time." I definitely function best when my schedule forces me to be certain places at specific times. The rub, of course, is that having a ful agenda each day drains me far more than a day of relaxing. A huge piece of the equation is the fact that my brain rarely "shuts down." Summers are usually the worst because it can be weeks of "free time," during which my brain tries to run in hundreds of directions. Unable to accomplish a fractional percentage of my mind's inexhaustible list, I would then wallow entire days away. Although my aspirations remain far to large, I am getting better and better at releasing myself from that cycle. I work to accept my limits, while challenging myself to get one or two small things done. Slowly, I am adapting. Hopefully, it will continue, and I will stay balanced and healthy. I still remember the lessons of last summer. Every time I pushed too hard, my body quit as I ran a fever. I would like to avoid being completely laid out.

Partial Productivity

The last day or so have gone decently for me. While I do still feel adrift, I am having spurts of success when it comes to knocking one or two things off my ever-growing list. Beyond the finances, I filed somethings in our office, and I managed to get some tasks done for MOONS-MN. Most importantly, I got invitations out to others for the MOONS-MN gathering this coming Saturday, July 18. I definitely hope that a few people can make it. We are trying to have a few gatherings that are more social in nature because we know that many people want to have MOONS be more of a support group.

The best part about getting the emails and the U.S. Mail sent is that I will not feel any guilt or shame now, regardless of the turn out on Saturday. Had I been unable to accomplish those tasks, though, I am sure that I would have blamed myself for any failures (real or imagined) that might have happened. I definitely wish at times that I did not have this overdeveloped sense of responsibility. The reality is that I can only do so much, and I am honestly putting forth my best effort. I also feel good that I am making progress in helping get MOONS more organized - many hands truly do make light work.

One goal that I do have for today is to put closer to one thing around my house. I am not sure yet whether that will be our office (or at least the clutter on the desks - since there is MORE to do than I can accomplish in a day) or cleaning the kitchen completely. I feel like I am slowly wrapping my head around the idea of chipping slowly away at my many tasks. That is just one more piece of the lifelong journey that living with narcolepsy gives to me. I also know that I will need to spend some time this afternoon resting. My sleep last night was limited. Although I intentionally worked late, I still managed to fall asleep (post-Xyrem) in our office. Fortunately, my wife rescued me and brought me to the bed for a couple hours of decent sleep.

Fading Focus

Summer is always a curve and a blessing for me. I LOVE that I actually have "free time" because I need it to recover from the frenetic pace of my school year. At the same time, I hate it because I am terrible with unstructured time. I have been doing better this summer, but I have struggled for the last two days. My problem is that I lack the self-discipline (or perhaps the energy) to create a modest schedule of tasks for the day. During the school year, I am forced to create some level of schedule because my work fills specific sections of my day. When summer truly arrives for me, though, I have such open swaths of time that I regularly fail to pre-plan what I will be doing on any given day.

I also get terribly gun shy of planning out specific days. I know that I overestimate my energy and abilities, meaning that if I plan out a series of days, I will likely be "behind" from the moment I set my schedule. At the same time, when I allow myself to "see where the day will take me," I find myself accomplishing next to nothing. Because so many things are a "top priority," I am often paralyzed by my own brain. Worse, my inaction causes me to begin berating myself, which makes my more tired, and I become even more inefficient.

As I said, I am getting better at managing these things. In reality, my learning style (concrete random) and my personality type (ENFP) do not lend themselves well to carefully planned out schedules. In fact, they are deadly for me because my "random" nature means that I will eventually fail, and the "concrete" aspect of my brain will condemn me for that failure. Thus, I need broad plans, and I must accept any step towards the completion of those plans as progress. For instance, our finances needed to get up to date. In the past I would have tried to get it completed in one day. Although I did manage to do that from time to time (by locking myself in our office for 8-10 hours), more often, I would get to a semi-acceptable point and then would leave the finances unfinished - possibly missing a bill. This time, I chipped away at the finances over a four day window. I not only got caught up, but I also managed to enter information for my wife, and I figured out some of the stranger issues in our investment numbers. I even got paperwork filed today.

Unfortunately, even successes like that do not completely sink in for me. I consciously know that I did a good job, but I don't truly feel it. Instead, the hypercritical portion of my brain berates me for taking so long. It also reminds me that the office is still a disaster, and the investment numbers are still not fixed. And, pushing those thoughts away (or should I say hearing them and then dismissing them as irrational) takes tremendous amounts of energy, leaving even more run down. As a result, I then spend a few days, like today and yesterday, wallowing a bit and trying to get into some sort of groove with my daily routine.

The other two challenges of summer tie into that last issue. This time off often results in a different series of events every day. I have clearly learned that I am at my best when I can get into a pattern and am able to follow that every day. Sadly, I am convinced that it will be years until such a thing is possible during the summer for me. My wife's job, my daughter's activities, my doctor appointments, and my work issues mean that summer will remain a hodge podge of starts and stops in each and every day. Summer also means a great deal of isolation. While I do get to spend time with my daughter, many of my days involve long stretches of time when I am alone. Although I have come to appreciate some quiet time when I am isolated, the reality is that I am an extreme extrovert. Thus, being by myself drains me. Sometimes, that alone can totally wipe me out. On the other hand, I can be having the worst excessive daytime sleepiness, but come to life as soon as I step in front of a group of people.

As in so many other things, I must be patient as I move forward living with narcolepsy. This condition is insanely bizarre. I can feel almost normal one day and horribly tired the next. Worse, so much of my day (each day) depends on my sleep, yet I have NO control over that. Even when I have been in a great pattern of going to sleep and waking at the same time each day, one thousand and one tiny little things can positively and negatively influence my rest. Thus, I must take a deep breath, do the best I can, and not fret about the highs and lows. I just need to ground myself in the present and stay with each moment.

Birthday of Beauty

Today is my wife's birthday. Hopefully, I have done enough (and will continue to do enough) to let her know how much I adore her. One of my greatest frustrations with narcolepsy is that it often keeps me from doting on my wife to the levels that she deserves. She is truly amazing. Beyond putting up with me, my wife manages to excel at an incredibly difficult job, to provide tremendous care to our daughter, and to maintain our household at levels that dazzle me.

I do hope that other people have been able to marry (or to be partners) with their best friend. My wife is an amazing blessing to me. She supported me throughout the awful journey that eventually led to my diagnosis, and she continued to keep my spirits up when I struggled to find the right meds. But, beyond those things, my wife provides me (and our daughter and the world) positive energy on a daily basis. She is quick to laugh and has a glorious sense of humor. She can even been childishly silly, which I love because I can too!

Yet, her magnificent intelligent regularly awes the doctors in the Department of Medicine at the University of Minnesota. My wife edits articles and grant proposals, particularly high level NIH grants. And, she is exceptional at what she does. Every physician, or other professor, who works with her raves about her talent as a writer and editor. My wife even has two published books. While multiple authors worked on the books, my wife did a vast majority of the "final" writing. The first book explored how to create a research productive department, while the second delves into effective mentoring.

The most amazing thing, though, is that my wife's great talent has nothing to do with her brilliance. Simply put, my wife is the kindest, sweetest, and most earnest person I have ever known. She goes out of her way to help others. She is also loyal to a fault. In fact, she is so loyal that she will choose honesty over self-preservation. She calls out injustice and dishonesty even when she knows that it may cost her social status. My wife exudes grace and class.

In the end, though, my wife is a person who deserves far more than the world gives her. I wish that my narcolepsy did not make it so difficult for me. I would love to shower her with gifts and affection. She deserves to be placed upon a pedestal. While I know I can't give her much, I will hold her tonight and whisper sweetly in her ear. One thing I know, simply letting my wife know how much she is appreciated will mean the world to her because she is a saint!

Stretched, Stressed, Stunned

I keep thinking that I might have a calm, low-key day. I continue to be wrong. Although yesterday was fantastic, it was also draining. As a result, I awoke exhausted and completely discombobulated. I spent the first part of the morning simply getting my bearings. Eventually, though, I remembered that my lawn needed mowing - desperately. Thus, I shook out the last of my cobwebs and tried to get some blood flowing.

I do continue to question my own sanity because it used to take me thirty minutes to mow my lawn. Now that I own a push-reel mower and a lawn sweeper, it takes significantly longer. The added bonus today was that I had not mowed for nearly two weeks. My grass was frighteningly long, particularly in our front yard. When all was said and done, it took me two hours to finish the lawn, and I know that a few spots could have used more passes with the mower. The physical effort drained me, but I remain committed to doing this. I feel good about helping the environment, and an unforeseen benefit is the fact that I am getting better at letting go of some perfectionist tendencies. The reality is that I will NEVER cut every blade of grass, even if I were using a power mower. Beyond the energy drain, though, the extend time I spent on the lawn meant that I needed to get ready immediately for my MOONS-MN planning meeting.

The MOONS-MN planning meeting went extremely well, but it served as a constant reminder of my many undone tasks. We have a social gathering planned for next Saturday, July 18, which will be a fun "snack potluck." We are hoping that the afternoon provides our members with the chance to talk and to interact with one another in a casual and informal way. We also got our September 12 meeting planned. It might the most productive planning meeting that we have ever had. But, that efficiency did not diminish the gnawing sense of anxiety in the back of my brain. I just need to remember that I will keep doing my best and accept what I cannot complete and celebrate what I can.

In many ways, the toughest part of my day was yet to come. As I was on my way home, my wife called. Thankfully, I was not driving because she definitely needed to talk to me. We were on the phone together for the entire twenty minutes that it took to get me home. Then, we talked for another hour upon my arrival. My wife had an extremely difficult interaction with another parent today. It is even more frustrating because this person was essentially attacking our daughter. While some of what this individual said might be true, the reality is that this person was only looking at the situation from one point of view, not taking any of the possibilities for our daughter into account. Even more remarkable, the other person dismissed comments from my wife about some of the struggles that our daughter has experienced. By the time I got home, my wife was seething. By the time our conversation ended, I had worked my own way through seething and was simply sad and disappointed. I think the great misfortune in all of this is that as a result of one parent being overly aggressive and overly involved, two children may lose a friendship. Hopefully, that will not be the case.

I have no doubt that tomorrow will arrive with its own challenges. I hope that narcolepsy will allow me the energy I need to keep working my way back to an even keel. If not, I will do what I can, take a breath, and work to let go of all of my challenges and disappointments.

Relaxed Reminiscing

I had an excellent day today. I wish I could say that I got done numerous tasks, or that I felt wide awake for the first time in years, but my definition of "excellent" is far more mundane these days. I did make progress on a few of the things weighing me down before my Friday ended, but that kept me up until nearly midnight. While that might have made for a rotten Saturday, the opposite happened.

I slept late (for me) and got up at 7:30 am. My wife and I had our weekly "talk time." It is always wonderful, but today was even better because we simply let ourselves enjoy the time together. We both got a chance to share some recent insights and passions. It was sweet, quiet, and fun, even watching the health care PR insider who was on Bill Moyers' Journal last night. After the time with her, I had a fun and exciting meeting with some folks from Narcolepsy Network. These folks are fantastic because they make the forums (and website) happen. Although I get support in many places, the people who I work with to moderate the Narcolepsy Network forums are some of the best people that I know - and they all have narcolepsy too. It is astounding to see the incredible work that they do. In fact, the new look of the forums (literally updated within the last two weeks) has brought in a decent number of new folks. Certainly, the Narcolepsy Network is far more than the forums (particularly if you become a member), but having a diverse way to connect to other PWNs is massively important. Our online meeting took two hours because we have such a good time interacting - even in a "chat."

The best part of my day was yet to come, though. My wife and I headed out to get our daughter. She was at an overnight birthday party on a lake. They even slept out in tents. Even the car ride was a hoot. My wife and I travel extremely well with each other. Once we added our daughter to the mix we headed from a spot north of the Twin Cities metro area to a suburb southwest of it. While that might seem awful, the traffic was relatively light - a huge plus. We were on our way to see some of my high school friends, particularly a friend who has been living in Great Britian for the past 12+ years.

The party was at his dad's house. The home and neighborhood are gorgeous, and the numerous children loved the pool in the backyard and the large game room in the finished basement. While ages ranged from 5 to 12, there were enough boys and girls at each range that everyone felt connected. The kids managed to keep themselves entertained, allowing the adults to interact as well. Even though it has been 23 years since we graduated from high school, these three friends of mine remain dear to me (and to my wife). While I do not see any of them as frequently as I would like, we always manage to pick up where we left off. It is also fun to reflect on the past and to learn about new adventures and activities.

Enhancing the entire afternoon, the weather was literally perfect. I often joke that many Minnesotans live in this state because we get three or four perfect days every summer. The sun shine was glorious, and a light breeze made the temperature, which hovered right at 80 degrees Fahrenheit, exquisite. Plus, we had fantastic food! My friend's dad made pulled pork for us, and my wife had homemade bruschetta and an amazing black raspberry cobbler. Both were a huge hit. Perhaps the best thing, though, was the chance to be present on this incredible day with a multitude of people who are good and decent. I simply sat around and chatted with a group of people who mean the world to me. The whole day reminded me that I am truly blessed. Narcolepsy drives me crazy, but it can't take a day like this from me. It thrilled me that I was not fretting about my "undone" tasks. Rather, I placed myself firmly in each and every moment of the day.

Groggy Gray Grumpies

I awoke today feeling like I had been run over by a car. There seems to be no definitive reason for this. I have not slept on any bathroom floors. I took both doses of Xyrem. I laid off exercising excessively for the last two days because I was feeling run down. Why in the world would my body be this sore? Then, I remembered - I tried to DO things this week. By that, I mean I had numerous meetings and worked on financial issues in our house. I also tried to do some housework and even spent quality time with my wife and my daughter. The most unnerving part is that all of that "work" resulted in me being even more wiped out AND the following:

• House is messier today than it was on Monday
• Lawn is still not mowed
• I need to make two phone calls - one to set up yet another meeting
• Our office is still not cleaned
• Our finances are not yet up to date
• Oodles of things need to get done for my job
• Oodles of things need to get done for MOONS-MN
• Oodles of things need to get done for our house - window stain, door paint, room touch up, blinds hung
• My wife is depressed, and more from me would help
• My daughter needs us to run errands and help packing for an overnight

I often find the hardest thing about narcolepsy is letting go of the shame and guilt that a list like this one can foster. I KNOW that I did a decent job this week, but it scares the hell out of me that my progress during the week resulted in everything getting further behind. I would love to pretend that I will just "work harder," but that is not possible. In fact, pushing too hard is what got me to this morning when I awoke feeling like I had been run over. It is a strange, sad cycle. And, if I am not careful, I can let it eat me alive. My baseline has always been an all or nothing approach. I throw myself into things, or I completely surrender. Unfortunately, that approach has never worked out super well. And, when it gets right down to it, it won't in this moment either. I will NOT get that list above done today, tomorrow, next week, or possibly even next year. I also will NOT give up my wife, my daughter, my house, my job, my health, or my sanity.

My favorite insight about life is that it is paradoxical at its core. There is always too much to do, that will never get done, and is always completed. If that makes little sense and complete sense, welcome to the world of paradox. Perhaps it is that one insight that lets my let go on days like today. I will not get all of those things, but eventually they will all get done (even if they don't). And, obviously, reactions and emotions like mine today are not exclusive to narcolepsy. It exacerbates the severity of my fatigue and my ability to do things, but each person has her or his limitations. Which is my second favorite insight - pain and struggle can never be compared. None of us will ever know what is like to be another person and face her or his challenges. Even if I met another almost 41 year old, male, English teacher, two years into his diagnosis of narcolepsy. While we might have some similar experiences, I could never understand his struggles. Thus, the challenge is to make peace with the good and the bad within our own bodies and minds. At the same time, it sure helps to have others in your life who at least "get it" when it comes to your own struggles. Thanks for reading and thanks for letting me vent a little. It might just help something get done today.

Fatiguing Fight

The thought hit me today that I expend tremendous energy battling my narcolepsy each day. Motivating myself to get up, pushing myself to exercise, forcing myself to bear down on a specific task, and stretching myself to be attentive to others (particularly my wife and daughter) are all doubly draining elements of my day. I truly want to do all of those things, but they not only take energy by their very nature, but also a second (actually initial) level of energy must also be exerted simply to overcome my inertia. Truth be total, my body and brain often seem to think that they would be most happy if I never left my bed.

Such a development would invariably be a disaster. I know my anxiety and depression well enough to know that even a couple of days of "nothing" would send me over the edge. My gray matter is constantly processing, thus with no outside stimuli, it would start to create its own. Having had a few other times in my life when my mind turned inward for "entertainment," I would like to avoid that FOREVER. Apparently, that big bundle of nerve cells in my cranium does fully get that it needs the rest of the body to keep functioning, since it has pushed the rest of me dangerously close to wanting to do something drastic. Fortunately, I am far more able to intervene when I can feel the irrationality starting.

None of that changes the situation, though, that narcolepsy not only makes my sleepy, but also it exhausts me because I have to push through it to "get going." I am sure it is the reason that I am an extrovert. I almost always dread starting - my day, my next project, a book, a conversation - anything. But, once I am engaged, I tend to gain energy for the interactions, even when it is something inanimate like a book. That is good because I think I would pass out if I did not draw energy from those activities. Of course, the catch for me is that when the stimulus is gone, my energy drops to much lower levels. My awareness to this reality has been heighten this week because I have been on the go a lot. I have had meetings and conversations for much of the past three days. When those have finished, though, I am always in a location that requires me to drive home (or to my next meeting). Certainly, I have felt tired other times when I have driven, but the fatigue this week has felt much more severe. It does not help that the burgeoning traffic in Saint Paul and numerous construction projects have made this the worst summer for traffic that I have ever seen.

I am not worried that I will fall asleep behind the wheel, but I am struck that each of my interactions have taken so much out of me. That happens at other times too, but I notice it less because I usually am not doing something as demanding as the driving that has followed each meeting or conversation this week. I definitely see it as another item about my narcolepsy that I need to tuck into my every growing file. I am also thrilled that this is my reaction rather than mentally beating myself up over something that is completely out of my control. Narcolepsy is something that I cannot "beat," but I also know that this is not about winning. It is about living and appreciating what I do have - every second of it.

Harsh Headache

Occasionally, I get horrid sinus headaches. Often, they come in waves - I will be fine for months and then bang, they are back. Thus, today made me a tad nervous. I have essentially had a fairly strong one all day. Offsetting my concern, though, is the fact that my wife and I were out with friends until late last night. Thus, I only had one dose of Xyrem and subsequently only got 4-5 hours of sleep.

Also possibly exacerbating the sinus pain was the fact that I had an early morning meeting with a colleague. She and I were planning to meet at a coffee shop at 9 AM. We needed to work on a document for school. Apparently, I should never schedule initial meetings for coffee shops. As was the case last summer, I again spent a significant amount of time searching for a coffee shop that I could not find. Although I was not trapped in strip mall hell like last year, I was in the bizarre downtown of White Bear Lake, Minnesota. The downtown is split by a highway, which already make travel inconvenient, but the side streets have insane one way offshoots and goofy layouts.

So, as was the case last year (on my way to the MOONS planning meeting that I never found), I drove around in my car for nearly an hour trying to find this stupid coffee shop. I did eventually discover it (it literally has MINIMAL signage). It was closed! Fortunately, my co-worker and I found each other. I was already a half an hour late when I discovered the coffee shop was closed. Assuming my colleague had left White Bear Lake, I headed to the Caribou to send a grovelling email, but when I walked in the door at Caribou, I immediately spotted her. We wound up having a highly productive meeting. I also did not lose my cool when I finally realized my initial "defeat." That is definitely progress.

Unfortunately, my headache intensified after the meeting. I tried to rest at home after that, but the pain would not leave. I took Tylenol before driving my daughter to her rehearsal. That made my afternoon meeting tolerable, but the drive back home once again helped to tighten the vice-grip feeling in my skull. I got little done this evening, but I know that is okay. I hope that a decent night's sleep will mitigate the pain. If not, I know that tomorrow will be a long day.

Awesome Acupuncture

Although I am still feeling the effects of my bathroom sleeping experience, I am in a significantly better mental and physical state today. While my massage yesterday is definitely a piece of the improvement, another HUGE aspect is that I had acupuncture today. I tend to look forward to my acupuncture anyway (I see my acupuncturist every two weeks), but today was phenomenal.

Two weeks ago, Sarah (my acupuncturist at Langford Chiropractic) used cups on me for the first time. Essentially, she created a vacuum seal in a cluster of places on my back. It made me feel significantly better. I was sincerely hoping that she might want to use those again today, particularly because the cups did wonders for the tension in my upper back. While I might get cups in two weeks, Sarah decided to stick (pun intended) with acupuncture today. She did "shake up" my treatment, though. She also had to wait to use electrical stimulation on the needles until half-way through my session (she had another patient "hooked up" when I started my treatment).

The different needle placement certainly grabbed my body's attention. She placed a four or five needles down the center of my torso. She also insert needles in my right ear and in a few spots on my legs and hands. Even before Sarah hooked up the electricity, I could feel energy moving in my body. While I often experience that to a small degree, today was radically different. I had not felt this level of energy movement for years. The moment that truly stunned me is that when Sarah did bring the electrical equipment into the room, I thought she hooked me up with it "on." As soon as she connected the electrodes to the needles in my left leg, I could feel the electricity jumping between them and through my leg. But, Sarah had NOT turned on the electricity yet. The energy I was feeling was the natural energy of my body.

I am positive that much of the reason for this heightened success is that I have been doing yoga frequently with my Wii Fit. When I had this experience before during acupuncture (in 2005), I was doing daily yoga. Thus, the fact that I had such a similar experience in 2009 at the first acupuncture session after I have begun to get into a yoga routine again seems like much more than coincidence. Even though the yoga on Wii Fit is simply a series of poses, probably chosen more for the stretching, it is clear to me that I am much more in tune with my body. The excitement of this experience has me looking forward to doing even more yoga and working my way back to doing Kundalini Yoga once again (as well as the Wii Fit). Although I know that I need the Western drug that help to offset the conditions of my narcolepsy, I am thrilled that I continue to use non-Western techniques to manage the disease. Acupuncture is an important part of my routine. It truly makes a major difference in the quality of my life.