Happy Halloween

Ready for the scariest aspect of my Halloween post? I "started" it on October 31. Basically, I typed a title and went to bed because I was exhausted that night. The NEXT time that I even looked at the post, or this blog, was today - November 18! The added irony is that my previous post (which I also finished today, but had written most of on October 30) commented extensively on the strange sensation of days lasting for weeks in October. Needless to say, November has been another story.

I can't believe how long it has been since I have written here. I know that I have been feeling that loss within my stress levels and my physical well being. I know I need to set better patterns, but it gets hard when my energy keeps dropping while my workload never ceases to build - yuck! My depression/anxiety have definitely been heightened, but I am still managing to stay balanced, most of the time. I do beat myself up in some capacity daily. What has grown in strength, though, is my ability to stop my inner tirades and to own the reality that I am doing the best that I can.

We had a weird Halloween this year. My daughter spent the whole weekend with a friend. My wife was horribly sick. I announced a football game. I think it was the first time that at least two of us were not together for the evening. I find that scary too. It is the direction that I should expect things to move. My daughter is definitely growing into a young woman. Still, it is hard to realize that soon my middle schooler will be on her way to college. That being said, I know that I have many days ahead with which I can challenge both of these amazing women in my life. I also must add that my daughter went trick-or-treating as a sandwich. She made "bread" out of foam. She also had lettuce, tomato and swiss cheese in the sandwich. It was brilliant. How lucky am I to have a daughter who WANTED to be a sandwich, and a year ago she was a crate of oranges. I love it!

Odd October

So often, I feel like time's relativity only increases in speed. Somehow, though, this past month has not only flown by with exponentially increasing acceleration, but also it has lasted an eon, or two. If that sounds completely paradoxical, imagine what it must feel like. Usually, I am wondering where the month went, but for the past week, I have had to remind myself that it is not yet November. While a portion of me does wonder where the past four weeks went, another section can seem to grasp that there is still one day left in this month - October. All of it seems complete bizarre.

Surreal as the month has been, I know that some of my confusion results directly from my narcolepsy. I find each day so exhausting that each one honestly can feel like a week. Yet, even with that, the memory issues that tend to accompany my sleepiness do make it seem like I have lost a day here, or a week there. Beyond the condition, though, the month has been bizarre due to the multitude of activities in my life.

I am trying to reduce the stresses in my life, but feel like I am losing that battle. My responsibilities to my daughter's school seem to be growing, as are my commitments to my various narcolepsy communities. Beyond that, my job is far more demanding from a physical standpoint this year. I am a great deal happier, but am also finding myself far more drained than I did last year (when I sat around and watched movies most days). Finally, the extensive renovations taking place at my home, coupled with the conferences that both my wife and I attended (one apiece), have made for a wildly rich and diverse month. I do find this sensation strange, but I love that for once, I do NOT feel like I lost every other day (or more).

Still Spinning

While I do feel like I am on more of an even keel, my life continues to vex. I am exhausted constantly of late, but I am still managing to get through each day. Our house remains a disaster, but a huge piece of that is the ongoing renovations. The new windows and doors are in, but the new siding was just started today (Wednesday - even if the post says that I wrote it last Friday). Hopefully, things will be done soon. We will need to stain the insides of the windows and paint the doors. We will also need to fix the plaster that broke apart during the window installation. But, once that is done, it will be wonderful to get our house back in order - literally.

I am hoping I can accomplish the same thing at work. School has had its ups and downs, but I continue to love working with new team. Our students continue to do good work. I also am enjoying the energy of my two colleagues. The problem remains keeping up with the correcting, but I continue to remind myself that I am doing the best that I can. We have just started a novel this week, and I am thoroughly overjoyed to teach literature again. While teaching has many aspects that I adore, nothing gets me more excited than pulling apart a book. Thus far, the students seem to be deeply engaged by it. I just hope that continues.

I need to get to sleep, but I also know that as I work to get more structure in my life, I MUST do three things. One, I need to be more rigid about "bed time." I need to get to sleep at 10 PM every night. I have not been doing that, and I am getting close to the point that I will wind up paying for these late nights. Two, I need to begin exercising and doing yoga on a consistent basis. Those are vital to me truly becoming balanced in my life. Finally, I MUST plan time blocks each day. I need to limit my expectations, but I also need to define clearly the time chunks of each day. Without that I won't make small amounts of progress on the multiple responsibilities in my life. Time to rest needs to be a part of that, but setting the habit of doing small amounts of work daily will allow me to be more successful.

MOONS Madness

This past week I twice tried to get decent photos of the full moon. The pictures from the first batch are okay. I have not actually looked at the second set yet. I want them because I am helping get the Midwest Organization of Narcolepsy Support - Minnesota chapter (MOONS-MN) organized. We have set up a new website with a new address - www.moonscentral.net. We are also trying to get the names and addresses for the group organized into a database. That way, we can generate all kinds of good data and be able to help each other more.

Beyond the website, I also traveled to the Minnesota Secretary of State's office to see if the Minnesota Narcolepsy Association could become "re-established" and have the name changed to MOONS. Turns out, it can be done. I filed the appropriate paperwork and now need to get the other planning group folks organized so we can adjust the by-laws appropriately. I also think that this move will help with the dues issues. As nutty as the past few weeks have been, I am proud of myself for taking care of this. Not only is MOONS-MN a non-profit in the state of Minnesota, but I also plan to check with the federal government to see if the Minnesota Narcolepsy Association (now MOONS-MN) still has federal nonprofit status under 501 (c)(3). All around the situation is excellent.

I have high hopes for our group. The two people who got us started are as committed as ever. We also have at least six other people deeply driven to see this group thrive. Now that we know that we are a non-profit for sure, we have a lot of fantastic avenues available. I truly think that MOONS can do awesome work. It gives hope that I will help all of these folks make a difference in the battle against narcolepsy.

Wild Week(s)

I know I need to stop harping on the rapidity of my daily life, but somehow the first half of October simply disappeared. Amid the Narcolepsy Network conference, crazy days at work, two injuries for my daughter, a week long school trip for my daughter, and construction on my house, I literally turned around and discovered that half of this month simply disappeared. At least I can vaguely piece together the events of the last couple weeks. I also know that I have "done good work" in the first half of this month. Nonetheless, I sincerely hope that the pace of my life slows a bit.

I can't foresee that happening, though. We still have a great deal of construction that needs to happen. My wife is also heading out of town for a conference. That means that I am a solo parent for this next week. What I need to do is breathe and relax. I also need to take each thing one step at a time. Of course, I seem to struggle to even take a half step at a time right now. I have made progress on a few things each day, but I continue to not get enough done. Our house is a mess. My correcting needs to be finished. I also need to get a number of things prepared for our next unit at school. And, I feel exhausted.

One of the worst things is that I have been fairly snappy today at home. Neither my wife, nor my daughter deserve that, but I am having a tough time grounding myself. My wife has a ton to get done before she leaves town. She is tense, and I wanted to stay out of her way today. Unfortunately, I assumed that she was going to head into her office. Instead, she stayed around the house and organized many things. Thus, I waited to do things I had hoped to accomplish. So, now, I have more to try to get done tomorrow. My daughter is simply a wonderful, but loud almost twelve year old. She spent most of the day commenting on many things that frustrate here and declaring her intentions to do this, that and the other thing. It might have been funny if I had not been so anxious. Rather than laugh at her antics, each word out of her mouth clicked my blood pressure up another notch.

These are the moments that drive me insane about narcolepsy. Because I am sleepy and exhausted, I muddle through my own day, AND I get angry at the people that I love the most because I can't handle their moods. I need to get into bed and go to sleep. Tomorrow is another day, and I will make the best of it. Whatever I can get done will be enough. It might not be what I want, but it will have to do.

Insightful Info One

My plan is to post on topics from the conference throughout the next few days. I need to do this in small chunks or I will never get it done. Please feel free to use the comments section of each post as a place to ask questions. I feel like I learned something in every session that I attended. Part of the reason the weekend overwhelmed me is that information kept buzzing around my brain. All week, I have been trying to remain mindful of each moment, but the thoughts and insights of the conference continue to bombard me. Hopefully, getting some of them out of my head (and into electrons) will allow me to function a bit better at work and around my house.

The most incredible scientific/medical moment of the weekend was the keynote address. I figured listening to Dr. Emmanuel Mignot would be a powerful experience (he is one of the two leading researchers of narcolepsy in the world. The other is Dr. Masashi Yanagisawa at the University of Texas Southwestern Medical Center). Dr. Mignot heads up the Center for Narcolepsy at Standford. He is once again on the verge of a major break through. Here are the basics from his talk:

1. They are using the Human Genome work and Affymetrix 6.0 Array Set: Genome Wide Association to look for other common variants within the genomes of people with narcolepsy with cataplexy. The Array allows blood samples to be tested against 906,600 Single Nucleotide Polymorphisms and 946,000 Copy Number Variations. Thus, with massive sample groups, a research can find common variants within common disease groups. This same testing is being used for a number of other common diseases (including many autoimmune diseases) like Celiac's Disease and Irritable Bowel Syndrome. Basically, the researcher wants to find a high p-value.

2. The paper published by Japanese scientists and Dr. Mignot at the end of September found a couple of genes in a study in Japan that had a smaller population sample (222 PWNs w/ C vs. 389 Control subjects). The two genes involved in the common variant both have roles in the sleep cycle. The study was repeated using a Korean group, a Caucasian group and an African-American group. The correlation was present in the Korean group, but not the other two. So that variant is likely only in Asian populations.

3. Dr. Mignot did a much larger study in the U.S. He tested 809 PWNs w/ cataplexy against 1120 Controls (all who had HLA-DQB1*0602 - this is the autoimmune factor that is definitely involved in causing narcolepsy). While Dr. Mignot did not tell us the name of the gene that they found, he did say that they found one. He also said that the protein that it controls is a part of the immune system and works with HLA like a hand and glove relationship. Needless to say, he is extremely excited about this. The p-value was 10 to the 12th power (which is insanely high). He still must replicate the results before he can publish, but he believes that this is a major discovery. While he still needs blood from 400 more PWNs w/ cataplexy in the U.S. to finish the replication, he is also doing a study in Japan with 800 PWNs and 800 Controls.

4. Finally, he has had the chance to work with five PWNs within a few months of symptom onset. As a result, he has done a western blot on them from their liver and found the same triplet of results. The five also all had recent viral infections and corresponding anti-infection antibodies. There needs to be far more research done, but he believes that Immunologists could devise a way to interrupt the disease process/autoimmune response that leads to narcolepsy.

The only part that is hard in all of this is that it is focused on Narcolepsy with Cataplexy. I might have abnormal or rare cataplexy, but am not sure. Even if I do, I am grouped in the same catagory of Narcolepsy without Cataplexy. As a result of that, my version of this disease might be highly different than what Dr. Mignot has discovered. I hope not. He certainly believes that figuring out Narcolepsy with Cataplexy will provide insights into the full spectrum of Narcolepsy. Nonetheless, it is unnerving to think that what I have is MORE complex than what his YEARS of research have uncovered. Still, it is exciting. The part that gives me the most hope is the clear link to some type of infectious agent having a role as a potential trigger. Even the remote possibility that this condition might be connected to my four bouts of Mono and/or my chronic toncillitis and/or my chronic sinusitis is thrilling.

Here is a link to a published Google Doc of my notes - http://docs.google.com/Doc?id=d6qf3b7_613mp98wg8. Folks should feel free to check them out. The talk was amazing. Perhaps the funniest thing is that Dr. Mignot completely seems like the absent minded, but brilliant, professor type. His clothes were fairly rumpled and a friend of mine told me that he reminds her of Dr. Oliver Sacks (whose life story was made into the movie Awakenings - Robin Williams plays the Sacks character, Dr. Sayer). Dr. Sacks is also brilliant, but can't seem to button his own clothes correctly. I always find it refreshing when "ordinary" (or even odd-looking) people prove to be extraordinary. Dr. Mignot certainly fits the bill!

Disgusting Delay

It is pathetic that I had an amazing experience at the Narcolepsy Network Conference, and THEN I don't write anything about it for almost a week. I also know that I won't actually be able to "catch up" tonight. Still, I knew that I had to relay at least some of the magic that the weekend brought. The weirdest thing is that the "slump" I was in the few weeks before the conference, definitely continued this week. In fact, my co-teachers sent me home on Monday. I was glad that they did, and I now know that I will need to ask for the day after the conference every time that I attend it (which I hope will be a yearly occurrence). Sadly, though, I have remained "off" the entire week. Some of it is simply fatigue. The other problem is that our grades were also due this week. Thus, I killed myself on Tuesday night (and Wednesday morning). I am glad, though, that other than one meltdown, I did hold it together. Much of that should be attributed to the residual joy of the weekend!

As I predicted, nothing could have prepared me for how much I would enjoy the weekend. I knew it would be incredible, and yet the it exceeded my wildest expectations. The amount that I learned in the keynote session alone blew my mind. Mr. Mignot, who runs the lab at Stanford and has had a hand in every major narcolepsy discovery in the last fifteen years, presented preliminary data that points to a clear understanding of the mechanism of narcolepsy's cause. It might not do much good for people who already have narcolepsy, but it will help in developing treatment. It could also mean a reduction in cases. Basically, Dr. Mignot has found a second gene that is involved in narcolepsy. The protein that it controls works in the autoimmune system like a glove to HLA's hand. Researchers already knew that HLA was involved in the destruction of the hypocretin producing cells in the hypothalmus. If Dr. Mignot is right, and this other gene is also involved, he may have proven that narcolepsy is an autoimmune disease. The other element he seems to have undercovered is that a person with these genes needs to experience an intense viral infection for the genes to be activated. Since I have had mono four times, I find that fascinating. I will definitely write more about this in a later entry, but suffice it to say, my knowledge of narcolepsy grew exponentially every second of the conference.

That said, the best part of the conference was meeting other PWNs. The information paled in comparison. Some people at the conference, I have known for quite some time. There were four people from the Minnesota MOONS group also attending the conference. I loved the chance to spend time with them over the three days. I also knew a number of people at the conference from spending time on narcolepsy forums through Facebook, MySpace and the Narcolepsy Network site. To meet them face-to-face, though, was truly breath-taking. Individuals who have been a major part of my life (some of them daily) during the past seven months suddenly appeared before me as flesh and blood. It was glorious. Even better, they are now even more firmly my friends. Even better, though, I made a number of friends who had never been a part of my life before Friday night. Whether it is the young man from Great Britain who battled his government to get the medicine that he needs or the loving dad from Wisconsin who wants to manage his narcolepsy so he can love his children as best he can, I found myself awed by the stories, the people, the love and the determination. People with narcolepsy live lives of meaning and purpose. They treasure each second because sleepiness is always around the next corner.

Having said all of this, the highlight of my weekend was getting a chance to have a much better understanding and insight into someone I deeply respect. The physician who co-leads our Minnesota support group is brilliant. She had to be one of the most sought out people throughout the weekend. I don't know if I have ever met a physician who more clearly personifies compassion and commitment. What made my time with her so wonderful, ironically, is that we interacted as friends. While I have no doubt that she is the best neurologist in Minnesota (and likely the midwest), particularly in terms of sleep issues, I don't want her to be my doctor. I would much rather have her be my friend. The entire experience made the weekend phenomenal. I am grateful for every second.

Better Before Beginning

I have arrived! The morning was insane because I didn't pack last night. I tested both my wife's and my daughter's patience. Somehow, I only forgot two things, and my wife was kind enough to go home for them before she drove into work. My in-service at work was good, but it wouldn't end! My wife called my cell twice before calling the school to have someone come get me. I had to walk past my boss as he was starting an announcement because I knew that I needed to get going. While my wife was more than a little irritated, I didn't completely goof up her day. My flight was fine and ridiculously fast. I am far more conscious of the "speed" of air travel after this flight. I have driven to Milwaukee many times. It is nearly impossible to get here in less than 6 hours without grossly violating the speed limit. We landed less than 45 minutes after we took off. That is wild!

I rode to the hotel on its shuttle. There were three airline employees in the van, two other people and me. I think the woman in the van is one of the people I have "talked" to a few times on the Narcolepsy Network forums. The man is one of our presenters. After checking in, I unpacked in my room then figured I would go hang out in the lobby to see if I would fine anyone I know. I checked in for the conference and sat down to check email and blog. Soon, people were arriving in droves. The energy and enthusiasm electrified the air with each passing moment. It is clear that attendees to this conference genuinely care for one another. I could feel my own excitement growing and I didn't know anyone.

Soon, I was approached by another attendee. He and I chatted for quite a while. This is his third conference. As a 63 year old PWN, he has lived much of his life with this disease, but for the last ten years he has given up Western medical treatments. He doesn't like pills. I think that is incredible. We discussed acupuncture, chiropractic and dietary issues. It was amazing. Truly, that one conversation would make this trip worthwhile, yet the conference hasn't even started yet! I knew this thing would be better than I imagined, but even knowing that I am still stunned.

I can't wait for my Minnesota friends to arrive, but I am also excited to meet some of the folks with whom I have interacted online. As the nice gentleman and I were talking, another PWN started giving him a hard time. Turns out this second PWN and I have traded messages in the Facebook group. He immediately mentioned another person from the Facebook group and said, "we were just talking about you." This is incredible. And, as I was typing this, the Minnesota car arrived! Hooray!

I know this weekend will blow my mind. It already is. This might be the first time I am honestly excited about having narcolepsy. Having it means I have a connection with these wonderfully cool people. MUCH more to follow.

Bursting Brains

I need to get to bed, but my mind has been spinning all night. My day at school was insane and an emotional roller coaster. I have not packed yet for the narcolepsy conference. The VP debate enraged me in every conceivable way. And, I feel like I should do everything I can for my wife before I go. That being said, I know that all of these things are out of my control, except maybe the packing. Although, having taken my Xyrem, I doubt that my packing would be effective at this time.

Writing late night certainly helped my mood. I honestly believe that openly owning the realities of life frees me from many of these issues. Rather than pretending that I can do everything, unloading as I did last night provides me the grounding that I need to accept my life. I have a chronic illness. It causes me to be fatigued and exhausted every moment of every day, even when I take large doses of stimulants. As a result I can NOT do more than I am. My work and efforts as a husband, dad, teacher, friend, person, citizen and PWN are good enough. The fact that I accomplish anything is awesome because I have narcolepsy.

I need to head to my bed, knowing that tomorrow will bring its own challenges and realities. I do think I am getting better at the "acceptance" thing, but it still drives me nuts at times that I can't do what I want. Sleep is in order though. In fact it is imminent since the Xyrem is reaching full force. Tomorrow, I am bound for Milwaukee. I can't wait!

Late Lounging

Somehow I am still awake. My "plan" is to be in bed at 10 PM, but for the umpteenth night in a row, it is nearly 11 PM and I am still doing things. The good side is that I am connecting with my wife and daughter, corresponding with my friends (particularly my sleepy PWN friends), blogging on a more frequent basis, AND getting some school work done. The bad? Well, I am not sleeping - which would qualify as VERY bad. I also know that part of the reason that I have been "off" is that I am not even getting the mediocre sleep that I usually get. I am pushing too hard, but I don't know if I am okay with doing "less" than I am right now.

I want to pull my fair share of the work in my classroom. I think I am doing that, but I am still behind in my correcting. The craziest part is that I am not nearly as far behind as I usually am at this point in the school year. I think that is a good sign, but I am also scared. If I can't get "caught up" when I am doing the best job that I have done in years, what does that mean? The situation forces me to wonder and worry about how viable this career path is. I LOVE teaching, and I know that I would be miserable without it. At the same time, I can't correct in the way that my peers can. Sitting and reading papers makes me more tired (see I have narcolepsy). I also know that teaching even part-time wipes me out for at least a few hours when I get home. Then, I also feel the pull to be with my wife and daughter.

Thus, I started correcting "for real" around 9 PM tonight. I did get through a few papers, but I was also exhausted. Thus, I moved, thought and responded slowly to my students' work. I also am not nearly as good at "shutting out" the hyper-correcting voices. Those would be the impulses to correct EVERY minuscule error that I find. As a result, it can take me 20 minutes to go over three paragraphs. I am not exactly efficient. Still, I am heartened by the fact that even in the face of futility, I am still trying to do some work.

I am heading to bed now, but needed to write this. I find myself in such strange and reflective places these days. I know I need to get through student papers more rapidly. And, while I can occasionally do that, I find that I am more at peace with my slow pace. I don't know if this acceptance of my "reality" is good or bad, but I do know that it just is. Daily, I find myself more at peace with the notion that I have done the best I could on that particular day. While that might eventually lead to my team members stringing me up (or my boss tossing me out on my ear), I firmly believe that I am on the proper path in my journey. Who knows, I might even come to enjoy this constant, mind-numbing fatigue... Yeah, probably not - but, a boy can dream can't he?