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.
Showing posts with label MOONS. Show all posts
Showing posts with label MOONS. Show all posts
Saturday, July 18, 2009
Wednesday, July 15, 2009
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.
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.
Sunday, July 12, 2009
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.
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.
Saturday, May 30, 2009
Many MOONS Memories
Today was wonderful (and exhausting). Approximately one year after making it to my first MOONS-MN meeting, I presented my story. I also shared the many online resources that have been such a tremendous help in my journey. I honestly feel like the presentation went extremely well.
Initially, the attendance looked to be low, but by the end of the meeting, the entire room was full. Even better, we had some returning members who had been unable to make the last few meetings. We also had two brand new people. One member informed me that he had been present when the Minnesota Narcolepsy Association was formed in the late seventies. I am super excited to work with him to get others from the earlier group re-connected to this newer version of the Minnesota support group.
I also must confess that I enjoyed sharing my own story with other PWNs. I find such power in speaking about my condition with peers who truly "get it." The many nodding heads throughout the entire presentation definitely affirmed my experiences. Because MOONS, this blog, the Narcolepsy Network, and Facebook are so intertwined in my journey, all of my comments brought floods of memories into my head. I found myself quite emotional as I reflected on my initial experiences with the support group on Facebook. The knowledge that only one year had passed since I first attended a MOONS meeting stunned me.
I have made great connections online, but the core people at MOONS at so dear to me. My head spins trying to remember coping with narcolepsy without having them in my life. Yet, that was the reality for me during the first nine months after my diagnosis. Those months were so dark and difficult, but I survived. That initial meeting inspired me to join Narcolepsy Network and to attend the national conference. While I still know that narcolepsy challenges my patience and limits every single day, I have so much more hope. My online support is part of that, but MOONS itself has done more for me than anything else. I am blessed to know these other persons with narcolepsy.
Initially, the attendance looked to be low, but by the end of the meeting, the entire room was full. Even better, we had some returning members who had been unable to make the last few meetings. We also had two brand new people. One member informed me that he had been present when the Minnesota Narcolepsy Association was formed in the late seventies. I am super excited to work with him to get others from the earlier group re-connected to this newer version of the Minnesota support group.
I also must confess that I enjoyed sharing my own story with other PWNs. I find such power in speaking about my condition with peers who truly "get it." The many nodding heads throughout the entire presentation definitely affirmed my experiences. Because MOONS, this blog, the Narcolepsy Network, and Facebook are so intertwined in my journey, all of my comments brought floods of memories into my head. I found myself quite emotional as I reflected on my initial experiences with the support group on Facebook. The knowledge that only one year had passed since I first attended a MOONS meeting stunned me.
I have made great connections online, but the core people at MOONS at so dear to me. My head spins trying to remember coping with narcolepsy without having them in my life. Yet, that was the reality for me during the first nine months after my diagnosis. Those months were so dark and difficult, but I survived. That initial meeting inspired me to join Narcolepsy Network and to attend the national conference. While I still know that narcolepsy challenges my patience and limits every single day, I have so much more hope. My online support is part of that, but MOONS itself has done more for me than anything else. I am blessed to know these other persons with narcolepsy.
Sunday, April 19, 2009
Fabulous Friends
I continue to struggle with my energy, but I had a great boost today. Even though the early afternoon was filled with drizzle and clouds, I found sunshine in a Perkins in Edina! Four of us met there today to do some MOONS planning. While I had many other things that needed doing, I know I made a great choice today. Seeing my friends from the MOONS group made my heart soar. Even better, we actually got somethings done. Typically, we banter and chat so much we rarely get anything decided.
Today, we generated ideas for some social gathering. We also decided to vary our meeting times. In an interesting irony, when MOONS-MN first started, most PWNs present wanted to meet at 10 AM. While that seems crazy to me (and the other planning folks - we barely make it to the meetings on time), we wanted to serve the group. Lately, though, we have heard that some would like a later meeting time. Thus, we will still meet at 10 AM on May 30, but our meeting on September 12 will begin at 4 PM. The plan will then be to alternate between the two times. It should be fun.
As for the "social" ideas, we are hoping to have a yoga session (that could become a PWN yoga class), a bowling event, a family picnic, and another movie session. All of the events should be great, but the best part is that we are striving more and more to provide opportunities for PWNs to gather with each other and to share stories about this crazy condition. I also love that we spent time thinking about bigger issues, including suggestions for both Narcolepsy Network and for physicians who treat people with narcolepsy.
Still, the best part of the afternoon was spending time with friends who honestly understand the difficulties and frustrations of this disease. It is so hard to explain to people why I seem to be dragging or how hard it is to form a thought at times. With my PWN friends, we don't even owrry if someone drifts off, and we all regularly ask to have things repeated because we missed them. One of the strangest realizations of my day is that I "knew" none of the people I met with today one year ago. I still marvel at how much has changed in just 365 days!
Today, we generated ideas for some social gathering. We also decided to vary our meeting times. In an interesting irony, when MOONS-MN first started, most PWNs present wanted to meet at 10 AM. While that seems crazy to me (and the other planning folks - we barely make it to the meetings on time), we wanted to serve the group. Lately, though, we have heard that some would like a later meeting time. Thus, we will still meet at 10 AM on May 30, but our meeting on September 12 will begin at 4 PM. The plan will then be to alternate between the two times. It should be fun.
As for the "social" ideas, we are hoping to have a yoga session (that could become a PWN yoga class), a bowling event, a family picnic, and another movie session. All of the events should be great, but the best part is that we are striving more and more to provide opportunities for PWNs to gather with each other and to share stories about this crazy condition. I also love that we spent time thinking about bigger issues, including suggestions for both Narcolepsy Network and for physicians who treat people with narcolepsy.
Still, the best part of the afternoon was spending time with friends who honestly understand the difficulties and frustrations of this disease. It is so hard to explain to people why I seem to be dragging or how hard it is to form a thought at times. With my PWN friends, we don't even owrry if someone drifts off, and we all regularly ask to have things repeated because we missed them. One of the strangest realizations of my day is that I "knew" none of the people I met with today one year ago. I still marvel at how much has changed in just 365 days!
Saturday, April 11, 2009
Suddenly Sunny
I awoke this morning with a bit more spring in my step. I am still exhausted, and I need to work on balance, but the world seems brighter today. It doesn't hurt that the sun is out in Duluth today, but the bigger reason is that once again fellow people with narcolepsy have lifted my spirits. Last night, we went to see my mother and my grandmother. It was good to spend time with them, but everyone is also struggling. My grandmother's health has both of them concerned and on edge. Thus, my stress level was higher when we returned to the hotel around 9 PM. Fortunately, I remember that a friend of mine that I met through the Narcolepsy Network had planned to chat with me on Yahoo Messenger. Sure enough, she was there, but soon others joined us.
The webmaster for the Narcolepsy Network is fantastic, as a person and as a web guru. As a result, he has been able to garner the assistance of a number of quality individuals around the country to help moderate the forums and to improve the site. I feel lucky to have been included. Thus, my "brief" chat with a friend transformed into a full-fledged planning session involving people in Minnesota, Michigan, Washington (state), and Ohio. We were discussing ways to promote and aid local/regional narcolepsy support groups by providing them space on the overall Narcolepsy Network site. The group out in Portland, Oregon (and Vancouver, Washington) already has material up in this fashion for their P.A.N.E.S. & V.A.N.E.S. group. The idea is absolutely thrilling because it will raise the profile of these groups (including the MOONS group I help organize), and those groups will also be more prone to connecting with each other.
Beyond the support group planning, we also discussed ways to make the overall site and forums better. While it is a team effort, the driving force IS our webmaster. Seriously, the guy is a saint (and a rocking musician). One element that he raised last night is trying to get the doctor who runs our Minnesota group onto the forums on a regular basis. I think it is brilliant. She is likely one of the best neurologists in the country, particularly for sleep medicine. But, more impressively, she genuinely cares for PWNs and wants to do everything she can to help them, even when they are not her patients. Hopefully, she will be open to establishing a presence on the Narcolepsy Network Online Forums. We shall see.
Even these stunning ideas did not raise my spirits the most. The best thing about this impromptu meeting was the love and respect that my friends sent my way. They have all been working like mad to improve elements of the Narcolepsy Network sites, while I have done a few things here and there. Rather than be frustrated that I am not doing more, all of them were overwhelming grateful for what I have done. They all get that I am doing the best I can while balancing family, work, volunteering, and my own health. Since all of them are also PWNs, they also know that the condition ebbs and flows. Each person was overjoyed that I was "back" in more of a groove, rather than chastising me for what had not been accomplished. I am certainly blessed to have both the Narcolepsy Network and these quality people in my life.
The webmaster for the Narcolepsy Network is fantastic, as a person and as a web guru. As a result, he has been able to garner the assistance of a number of quality individuals around the country to help moderate the forums and to improve the site. I feel lucky to have been included. Thus, my "brief" chat with a friend transformed into a full-fledged planning session involving people in Minnesota, Michigan, Washington (state), and Ohio. We were discussing ways to promote and aid local/regional narcolepsy support groups by providing them space on the overall Narcolepsy Network site. The group out in Portland, Oregon (and Vancouver, Washington) already has material up in this fashion for their P.A.N.E.S. & V.A.N.E.S. group. The idea is absolutely thrilling because it will raise the profile of these groups (including the MOONS group I help organize), and those groups will also be more prone to connecting with each other.
Beyond the support group planning, we also discussed ways to make the overall site and forums better. While it is a team effort, the driving force IS our webmaster. Seriously, the guy is a saint (and a rocking musician). One element that he raised last night is trying to get the doctor who runs our Minnesota group onto the forums on a regular basis. I think it is brilliant. She is likely one of the best neurologists in the country, particularly for sleep medicine. But, more impressively, she genuinely cares for PWNs and wants to do everything she can to help them, even when they are not her patients. Hopefully, she will be open to establishing a presence on the Narcolepsy Network Online Forums. We shall see.
Even these stunning ideas did not raise my spirits the most. The best thing about this impromptu meeting was the love and respect that my friends sent my way. They have all been working like mad to improve elements of the Narcolepsy Network sites, while I have done a few things here and there. Rather than be frustrated that I am not doing more, all of them were overwhelming grateful for what I have done. They all get that I am doing the best I can while balancing family, work, volunteering, and my own health. Since all of them are also PWNs, they also know that the condition ebbs and flows. Each person was overjoyed that I was "back" in more of a groove, rather than chastising me for what had not been accomplished. I am certainly blessed to have both the Narcolepsy Network and these quality people in my life.
Tuesday, March 10, 2009
Sleepy Savings
Somehow it is already March 10th. Time seems to spin wildly out of control, particularly when my life gets stressful. Fortunately, I survived the end of yet another trimester. I also thoroughly enjoyed Suddenly Sleepy Saturday. The movie Wide Awake was decent, particularly when one remembers that it was made for Lifetime Network. The main character is a PWN and a narcolepsy researcher. She is swept up in a thriller when someone sabotages the labs research. Much better than the film was spending time socially with other PWNs.
Interestingly enough, though, I feel like I am the one who needed a stronger reminder about the impending time shirt with the arrival of Daylight Savings Time. I had a tough time going to sleep on Saturday night. Sunday morning and evening were even worse. As a person with narcolepsy, I try to have a firmly established sleep routine. The shift of even an hour can radically alter that process. I still did not feel right today. I honestly think that I should start with my new sleep pattern the week before Daylight Savings Time. In fact I am likely going to do that for both the end of Daylight Savings Time and for next year's Sleep Awareness Week.
What shocks me in this realization is how dependent my schedule, and my life, is on routine. I have always known that I function better with structure, at least until my obsessive tendencies cause me to implode. But, the bottom line is that a set routine and pattern IS the best way to cope with my narcolepsy. I still need to be flexible enough to accept the waxing and waning of energy, but I know I need to find some semblance of structure in my standard day. That seems far-fetched given the chaotic nature of our household, but it is definitely an important goal that I must pursue.
Interestingly enough, though, I feel like I am the one who needed a stronger reminder about the impending time shirt with the arrival of Daylight Savings Time. I had a tough time going to sleep on Saturday night. Sunday morning and evening were even worse. As a person with narcolepsy, I try to have a firmly established sleep routine. The shift of even an hour can radically alter that process. I still did not feel right today. I honestly think that I should start with my new sleep pattern the week before Daylight Savings Time. In fact I am likely going to do that for both the end of Daylight Savings Time and for next year's Sleep Awareness Week.
What shocks me in this realization is how dependent my schedule, and my life, is on routine. I have always known that I function better with structure, at least until my obsessive tendencies cause me to implode. But, the bottom line is that a set routine and pattern IS the best way to cope with my narcolepsy. I still need to be flexible enough to accept the waxing and waning of energy, but I know I need to find some semblance of structure in my standard day. That seems far-fetched given the chaotic nature of our household, but it is definitely an important goal that I must pursue.
Saturday, February 28, 2009
Many MOONS Moods
Today was wonderful. We had a fantastic MOONS meeting. I find it incredible that gathering with other PWNs can provide me such joy. Some of them I know, but many are still strangers to me. Yet, simply being a room and knowing that a majority of the people there experience some of the same ridiculous struggles that I endure makes me smile.
I also find it fantastic that I learn something new every time we gather. Today, Dr. Eve Rogers shared her Narcolepsy Basics talk. Invariably, she need to cut some sections of it, but everything that she was able to present was riveting. One of the most stunning pieces of information for me was the connection between hypocretin/orexin (the protein missing in PWNs' CSF) and temperature regulation. My night sweats can be unreal, and I also have periods of time that I feel feverish or chilled. Suddenly, it seems that I might have yet another aspect of my health that is connected to and undermined by my narcolepsy.
The other super cool thing is that I get to see some of these folks again next week. Tomorrow is the start of Sleep Awareness Week. It culminates with Suddenly Sleepy Saturday. The National Sleep Foundation decided to connect sleep awareness with the beginning of daylight savings time. Thus, when we "spring ahead" on Saturday night, March 7, everyone has a chance to glimpse briefly some of the fatigue and sleepiness of narcolepsy. To celebrate the day, our MOONS groups has decide to hold the first (annual) Suddenly Sleepy Saturday. We are going to bring blankets and watch a movie. We will also have some pizza and a cake (Dr. Rogers' birthday is the day before our event). While I am thrilled that we are having an "event." Much more importantly, this gathering will be the first purely social MOONS activity. I am definitely hopeful that we will continue to provide both educational and social events.
I also find it fantastic that I learn something new every time we gather. Today, Dr. Eve Rogers shared her Narcolepsy Basics talk. Invariably, she need to cut some sections of it, but everything that she was able to present was riveting. One of the most stunning pieces of information for me was the connection between hypocretin/orexin (the protein missing in PWNs' CSF) and temperature regulation. My night sweats can be unreal, and I also have periods of time that I feel feverish or chilled. Suddenly, it seems that I might have yet another aspect of my health that is connected to and undermined by my narcolepsy.
The other super cool thing is that I get to see some of these folks again next week. Tomorrow is the start of Sleep Awareness Week. It culminates with Suddenly Sleepy Saturday. The National Sleep Foundation decided to connect sleep awareness with the beginning of daylight savings time. Thus, when we "spring ahead" on Saturday night, March 7, everyone has a chance to glimpse briefly some of the fatigue and sleepiness of narcolepsy. To celebrate the day, our MOONS groups has decide to hold the first (annual) Suddenly Sleepy Saturday. We are going to bring blankets and watch a movie. We will also have some pizza and a cake (Dr. Rogers' birthday is the day before our event). While I am thrilled that we are having an "event." Much more importantly, this gathering will be the first purely social MOONS activity. I am definitely hopeful that we will continue to provide both educational and social events.
Saturday, October 18, 2008
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.
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.
Thursday, October 9, 2008
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.
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.
Saturday, September 27, 2008
Starbucks Success
Once more into the breech, dear friends, once more. Taking my sanity into my own hands, I ventured forth today, returning to the nightmare of Maple Grove's shopping insanity. Wisely, I brought back up, another MOONS group member who lives in Saint Paul. The sky loomed ominously of my car during the entire trip, but I had no fear. My gas tank was full and my faith high. We arrived at the Elm Creek Blvd Starbucks, knowing full well that it was THE ONLY one on that stretch of road. Almost immediately, we spotted friendly faces. Turns out, MOONS was having a planning meeting!
The afternoon was fantastic. We certainly got sidetracked at times, but people with narcolepsy should be allowed some latitude. Plus, it was wonderful to have only a handful of us with Dr. Rogers. She is wonderfully intelligent, and I can easily see why her patients in the group adore her. Often, a topic would come up, and Dr. Rogers was more than willing to share what she knew about that particular medication or treatment. Even more rewarding, though, was the collegiality among the MOONS member there. We can all see the potential of the group, and it felt awesome to lift some of the organizing weight from the shoulders of Dr. Rogers and Charlie. Those two have bent over backwards to get everything going. Now, some of us can provide assistance to help the group become even better.
Even though the next meeting is not until November 15, I am already excited. This group, along with the online resources that I have found, has been vital to my own acceptance of my narcolepsy. I feel such joy getting to know other people with narcolepsy. It is glorious. I feel blessed that I can have a chance to help others in the same way that I have been aided. I also know that my joy as stems from the reality that I will see some of my MOONS friends in less than a week. Milwaukee approaches rapidly, and I can not wait. We will theoretically have another MOONS planning meeting there because we will be doing some MOONS work at the hotel - making web site changes, working on the database, planning a group presentation for the next meeting. I love it!
I knew that today would be significantly better than my last trip to the madness of Maple Grove, but once again I am stunned by how incredible MOONS has left me. It truly is magical to be with a group of people who implicitly understand the bizarre frustrations of this disease. Nothing can compare to it. And to think, in less than a week, I will not be with a few other PWNs like I was today, or even the 30-40 PWNs that are at MOONS meetings. In Milwaukee, I will be with over 100 other people with narcolepsy. That boggles my mind!
The afternoon was fantastic. We certainly got sidetracked at times, but people with narcolepsy should be allowed some latitude. Plus, it was wonderful to have only a handful of us with Dr. Rogers. She is wonderfully intelligent, and I can easily see why her patients in the group adore her. Often, a topic would come up, and Dr. Rogers was more than willing to share what she knew about that particular medication or treatment. Even more rewarding, though, was the collegiality among the MOONS member there. We can all see the potential of the group, and it felt awesome to lift some of the organizing weight from the shoulders of Dr. Rogers and Charlie. Those two have bent over backwards to get everything going. Now, some of us can provide assistance to help the group become even better.
Even though the next meeting is not until November 15, I am already excited. This group, along with the online resources that I have found, has been vital to my own acceptance of my narcolepsy. I feel such joy getting to know other people with narcolepsy. It is glorious. I feel blessed that I can have a chance to help others in the same way that I have been aided. I also know that my joy as stems from the reality that I will see some of my MOONS friends in less than a week. Milwaukee approaches rapidly, and I can not wait. We will theoretically have another MOONS planning meeting there because we will be doing some MOONS work at the hotel - making web site changes, working on the database, planning a group presentation for the next meeting. I love it!
I knew that today would be significantly better than my last trip to the madness of Maple Grove, but once again I am stunned by how incredible MOONS has left me. It truly is magical to be with a group of people who implicitly understand the bizarre frustrations of this disease. Nothing can compare to it. And to think, in less than a week, I will not be with a few other PWNs like I was today, or even the 30-40 PWNs that are at MOONS meetings. In Milwaukee, I will be with over 100 other people with narcolepsy. That boggles my mind!
Saturday, September 6, 2008
Mighty MOONS
I just got back from my second MOONS meeting (I figure I can't count the Planning Meeting/suburban shopping nightmare). Even though I knew it would be better than I was expecting, the experience blew me away again. The group interacted even more and is clearly beginning to connect on deeper levels. In fact, the meeting devolved at the end into a series of small conversations which was beautiful to see. Lots of people were having "A-ha" moments throughout the room. The weirdest part is that we never got to the featured speaker. A member of MOONS was going to tell her story, focusing specifically on her pregnancy. But, I think even she would say that things went great. Actually, she is excited to have two more months to use for further development of her material.
Dr. Rogers opened the meeting with a plug for the Narcolepsy Network National Conference being held in Milwaukee, WI from October 3 to October 5. Since I am already registered to go, I brought my flier for it and was able to give it to a wonderful woman sitting next to me. She is now in her 80s, but didn't learn about her narcolepsy until she was 60. She spent most of her life battling this disease and didn't even know it. That is incredible. I was also thrilled to see that a number of the other MOONS folks are considering the conference or are already planning to go.
Dr. Rogers then made an earnest pitch for assistance. She and Charlie, the narcoleptic who has been helping her, know that they can't do this alone. In fact, both of them felt under prepared for this meeting simply because life in general can move too fast. I did find out that the "planning meeting" in July did happen. Dr. Rogers and one other person made it. Turns out I was in the right place, but either got there after they left or before they arrived. The good part is that lots of people are excited to help now. We do have a planning meeting scheduled for three weeks from now. I plan to go and brave shopping madness again. This time, I will work to arrive early and stay until someone shows up. We also set a new date for the next large group meeting. We didn't know it at the time, but we will listen in November to a group member speak about her life with narcolepsy and her pregnancy (that of course is the tabled speaker from today's meeting).
What got us "off track" was some incredible information from Dr. Rogers about tracking your own medical records. It is a good idea to have your own set no matter what your health is like, but it is imperative for people with chronic conditions. By doing so, you can catch errors and be able to clarify your condition for new doctors. Many of us had input as we moved through the material. I have kept my own records for the past four years, but I learned tons of new things to include. I also got to plug (a couple of times) acupuncture and my favorite chiropractic clinic in the whole world - Langford Chiropractic! Apparently, Dr. Rogers has been taking an acupuncture course and realized that Chinese medicine has treatments for narcolepsy, but discuss it as chronic fatigue syndrome. I shared my experiences as did others.
Once again, though, the best part of the meeting was chatting with others at the end of it. Two of my former students were there, and it was great to connect with Charlie again. I wrote a note to Dr. Rogers offering my assistance. Slowly, some people trickled out, but a group of us stayed until nearly 1 PM. Then, we decided to go get food together. We ate across the street and continued sharing stories and insights until nearly 3 PM. As I said earlier, I knew the day would exceed my expectations, but even in my wildest dreams, I never saw myself at lunch with five other narcoleptics (and one spouse and one baby). I only have to wait three weeks for the planning meeting. AND, it is only four weeks until the conference in Milwaukee. If lunch with five other narcoleptics is this cool, my brain reels with the possibilities of having a meal with two hundred narcoleptics.
I also feel great today because I know that I can help. I have no plans to try to do everything, but I certainly will be an asset and benefot myself and others. Just talking to the older woman and her husband today, I gave them some new ideas. I also provided some insights to another woman whose husband has narcolepsy. With school starting well and feeling managable, my wife getting her new job, and me working to stay balance, I am filled with joy at the potential for a good year ahead. I certainly know that my narcolepsy and fatigue will not go away, but I am more hopeful than ever that I can take each day as it comes and appreciate the upside, rather than dwelling on the mishaps.
Dr. Rogers opened the meeting with a plug for the Narcolepsy Network National Conference being held in Milwaukee, WI from October 3 to October 5. Since I am already registered to go, I brought my flier for it and was able to give it to a wonderful woman sitting next to me. She is now in her 80s, but didn't learn about her narcolepsy until she was 60. She spent most of her life battling this disease and didn't even know it. That is incredible. I was also thrilled to see that a number of the other MOONS folks are considering the conference or are already planning to go.
Dr. Rogers then made an earnest pitch for assistance. She and Charlie, the narcoleptic who has been helping her, know that they can't do this alone. In fact, both of them felt under prepared for this meeting simply because life in general can move too fast. I did find out that the "planning meeting" in July did happen. Dr. Rogers and one other person made it. Turns out I was in the right place, but either got there after they left or before they arrived. The good part is that lots of people are excited to help now. We do have a planning meeting scheduled for three weeks from now. I plan to go and brave shopping madness again. This time, I will work to arrive early and stay until someone shows up. We also set a new date for the next large group meeting. We didn't know it at the time, but we will listen in November to a group member speak about her life with narcolepsy and her pregnancy (that of course is the tabled speaker from today's meeting).
What got us "off track" was some incredible information from Dr. Rogers about tracking your own medical records. It is a good idea to have your own set no matter what your health is like, but it is imperative for people with chronic conditions. By doing so, you can catch errors and be able to clarify your condition for new doctors. Many of us had input as we moved through the material. I have kept my own records for the past four years, but I learned tons of new things to include. I also got to plug (a couple of times) acupuncture and my favorite chiropractic clinic in the whole world - Langford Chiropractic! Apparently, Dr. Rogers has been taking an acupuncture course and realized that Chinese medicine has treatments for narcolepsy, but discuss it as chronic fatigue syndrome. I shared my experiences as did others.
Once again, though, the best part of the meeting was chatting with others at the end of it. Two of my former students were there, and it was great to connect with Charlie again. I wrote a note to Dr. Rogers offering my assistance. Slowly, some people trickled out, but a group of us stayed until nearly 1 PM. Then, we decided to go get food together. We ate across the street and continued sharing stories and insights until nearly 3 PM. As I said earlier, I knew the day would exceed my expectations, but even in my wildest dreams, I never saw myself at lunch with five other narcoleptics (and one spouse and one baby). I only have to wait three weeks for the planning meeting. AND, it is only four weeks until the conference in Milwaukee. If lunch with five other narcoleptics is this cool, my brain reels with the possibilities of having a meal with two hundred narcoleptics.
I also feel great today because I know that I can help. I have no plans to try to do everything, but I certainly will be an asset and benefot myself and others. Just talking to the older woman and her husband today, I gave them some new ideas. I also provided some insights to another woman whose husband has narcolepsy. With school starting well and feeling managable, my wife getting her new job, and me working to stay balance, I am filled with joy at the potential for a good year ahead. I certainly know that my narcolepsy and fatigue will not go away, but I am more hopeful than ever that I can take each day as it comes and appreciate the upside, rather than dwelling on the mishaps.
Thursday, September 4, 2008
Fast Fun
I can't believe it is Thursday! My week has flown. In large part it is due to the crazy pace of my school day. While that has been a bad thing at time, it is wonderful this year. I am enjoying my new teaching assignment more and more every day. Our students are wonderful, and I have never felt better about the way our team is functioning. We truly complement each other and support one another. I also love that we are modeling good behavior and attitudes for our students.
Another stunning aspect of the year, thus far, is the enthusiasm that I have had upon arriving home. I am not only enjoying my time in school, but also I am enjoying the work that I am doing at home, even the correcting. It is still a pain, but I feel like I am providing good (and timely) feedback for the first time in years. Just today, I connect with a student and believe that it made a real difference for him.
I still need to achieve a better balance to my days, but I am spending time each day focused on me. It needs to be more of a priority, particularly so I can write more frequently on my blog (rather than finishing three posts started the previous Sunday and one new post all in one sitting). New curve balls come every day, but I am handling them better than ever. I need to remain vigilant, but I am hopeful that I can thrive by keeping myself, my family and my job in balance.
That said, I know that many rough days are ahead. But, a bad day does not need to become a bad week or a bad month. That has happened far too often in the past. I need to remain attentive to the here and now. Mindfulness remains my mantra. By restricting my frame to the present, I can allow myself the opportunity to exist rather than to drift between regretting the past and dreading the future. I know that my narcolepsy will never go away, but I certainly can find ways to maximize what I can do with what I have.
Best of all, this crazy pace means that my MOONS meeting this Saturday will arrive even sooner. AND, the National Narcolepsy Network conference is only a month away. I can't wait for either one. As much as I enjoy interacting with other narcoleptics online, I am anxious to talk with folks in face-to-face settings!
Another stunning aspect of the year, thus far, is the enthusiasm that I have had upon arriving home. I am not only enjoying my time in school, but also I am enjoying the work that I am doing at home, even the correcting. It is still a pain, but I feel like I am providing good (and timely) feedback for the first time in years. Just today, I connect with a student and believe that it made a real difference for him.
I still need to achieve a better balance to my days, but I am spending time each day focused on me. It needs to be more of a priority, particularly so I can write more frequently on my blog (rather than finishing three posts started the previous Sunday and one new post all in one sitting). New curve balls come every day, but I am handling them better than ever. I need to remain vigilant, but I am hopeful that I can thrive by keeping myself, my family and my job in balance.
That said, I know that many rough days are ahead. But, a bad day does not need to become a bad week or a bad month. That has happened far too often in the past. I need to remain attentive to the here and now. Mindfulness remains my mantra. By restricting my frame to the present, I can allow myself the opportunity to exist rather than to drift between regretting the past and dreading the future. I know that my narcolepsy will never go away, but I certainly can find ways to maximize what I can do with what I have.
Best of all, this crazy pace means that my MOONS meeting this Saturday will arrive even sooner. AND, the National Narcolepsy Network conference is only a month away. I can't wait for either one. As much as I enjoy interacting with other narcoleptics online, I am anxious to talk with folks in face-to-face settings!
Saturday, May 31, 2008
Moony for MOONS
One of the problems when you are overly effusive in your praise is that you have no linguistic outlet when something grossly outpaces your frame of reference. Thus, you return to simple statements. Today has been the best day I have had in a long time. The MOONS meeting I attended today was better than I could have ever expected. While I was excited at the prospect of meeting others who "get it," I figured that the event would be good, but not life-changing. I love it when I am this wrong.
In typical fashion of late, I was...late. I once again missed my 1 AM dose of Xyrem. I took it at 2:30 AM. The irony this time is that I know I woke up to the alarm. I even took my methylphenidate ER tablet. But somehow, I passed out before getting to the Xyrem. As a result, I struggled to get up and still needed to pack for my trip to Osakis. I also made the decision to swing by ultimate practice to drop off my check for jerseys. Brilliant! I know that I will some day realize that humans without sleep disorders don't try to cram all of those things into a morning, and I will finally cut myself some slack. Sadly, it was not today.
Even with all of that chaos, I made it to the meeting by 10:15 AM. Things had not started, and I was met in the hall by a wonderful woman who turned out to be Dr. Eve Rogers, the physician who is co-organizing the group. We started and the young man who has been the driving force behind this effort outlined the ideas and basics. He also provided us with a great survey to explore what we want out of the group. Then, we moved on to our featured speaker, Elizabeth Nager - a therapist who specializes in patients with chronic illness. She only manages to get through a fourth of her prepared talk because people were so engaged with what she said and wanted to explore every idea more. I could feel the relief in the room and in myself as each of us realized that we were not crazy. In fact, we all heard, some folks for the first time, that the emotions and experiences of our lives with narcolepsy were normal and natural, specifically because narcolepsy is a chronic and invisible condition. The best thing is that she is willing to return to "finish" her talk. While I have know for years the importance of my own therapy, it was glorious to watch others make that same realization.
Although we had almost reached the end of the meeting, Dr. Rogers presented a plethora of fascinating material relating to new discoveries about sleep and an upcoming sleep conference. She also shared that the American Academy of Sleep Physicians declared in December of 2007 that modafinil (Provigil) and sodium oxybate (Xyrem). That is a vital piece of information that many narcoleptics can use to leverage their insurance company to pay for the meds that they need. I was in the presence of a physician placing patients well ahead of insurance and financial needs. Amazing!
Finally, as the meeting broke up, a few of us still hovered. A young woman and I shared our connection with Dr. Rogers and the organizer. We each chatted a bit about our own experiences and histories. We continued the dialogue in the elevator and all of the way to the parking ramp. The meeting ended just after Noon and the three of us didn't break up until 12:45. Then, the organizer and I traded more stories standing in the parking ramp until 1:25! I definitely made a new friend. I am also ecstatic to have found a genuine outlet for my desire to help myself and other narcoleptics. I can't wait until the planning meeting in July. I also think that MOONS can become a fantastic outlet for many of the narcoleptics in the Twin Cities.
As I drove away, I knew peace. I felt a deep satisfaction that I know will provide me energy and strength in my darker moments. I also know that it helped on my drive from Saint Louis Park to Alexandria. Two plus hours in the car - alone - is not always the best idea for narcoleptic, but I made the trip without a hitch. My friends the Barenaked Ladies and Mike Doughty helped me a great deal, but I also know that the energy filling me from MOONS factored in as well. I even know that I will be going to the September 6th meeting - even if it means that I need to miss the Heavyweights Tournament for tba (and it does). While I will be sad to miss out on a great ultimate tourney, I would be even more disappointed to not be a part of this incredible organization. I am even hoping to convince folks that we should offer smaller monthly gathering around the Twin Cities at which people can share their stories and simply connect. Heck, after today, I might even consider join the Narcolepsy Network and attending the national convention in October - it is in Milwaukee.
I am blessed in many ways, but the gift of today has been beyond the pale. To top it all off, I am in a hotel in Alexandria, MN hours away from watching one of my all time favorite students and friends graduate from high school. I am not sure why, but clearly God has decided to shower me with love (of course, I might have passed on the whole having narcolepsy part, but heck even that has its moments). In case you did not guess, I will likely write more (MUCH more) about MOONS. Just though I should warn you.
In typical fashion of late, I was...late. I once again missed my 1 AM dose of Xyrem. I took it at 2:30 AM. The irony this time is that I know I woke up to the alarm. I even took my methylphenidate ER tablet. But somehow, I passed out before getting to the Xyrem. As a result, I struggled to get up and still needed to pack for my trip to Osakis. I also made the decision to swing by ultimate practice to drop off my check for jerseys. Brilliant! I know that I will some day realize that humans without sleep disorders don't try to cram all of those things into a morning, and I will finally cut myself some slack. Sadly, it was not today.
Even with all of that chaos, I made it to the meeting by 10:15 AM. Things had not started, and I was met in the hall by a wonderful woman who turned out to be Dr. Eve Rogers, the physician who is co-organizing the group. We started and the young man who has been the driving force behind this effort outlined the ideas and basics. He also provided us with a great survey to explore what we want out of the group. Then, we moved on to our featured speaker, Elizabeth Nager - a therapist who specializes in patients with chronic illness. She only manages to get through a fourth of her prepared talk because people were so engaged with what she said and wanted to explore every idea more. I could feel the relief in the room and in myself as each of us realized that we were not crazy. In fact, we all heard, some folks for the first time, that the emotions and experiences of our lives with narcolepsy were normal and natural, specifically because narcolepsy is a chronic and invisible condition. The best thing is that she is willing to return to "finish" her talk. While I have know for years the importance of my own therapy, it was glorious to watch others make that same realization.
Although we had almost reached the end of the meeting, Dr. Rogers presented a plethora of fascinating material relating to new discoveries about sleep and an upcoming sleep conference. She also shared that the American Academy of Sleep Physicians declared in December of 2007 that modafinil (Provigil) and sodium oxybate (Xyrem). That is a vital piece of information that many narcoleptics can use to leverage their insurance company to pay for the meds that they need. I was in the presence of a physician placing patients well ahead of insurance and financial needs. Amazing!
Finally, as the meeting broke up, a few of us still hovered. A young woman and I shared our connection with Dr. Rogers and the organizer. We each chatted a bit about our own experiences and histories. We continued the dialogue in the elevator and all of the way to the parking ramp. The meeting ended just after Noon and the three of us didn't break up until 12:45. Then, the organizer and I traded more stories standing in the parking ramp until 1:25! I definitely made a new friend. I am also ecstatic to have found a genuine outlet for my desire to help myself and other narcoleptics. I can't wait until the planning meeting in July. I also think that MOONS can become a fantastic outlet for many of the narcoleptics in the Twin Cities.
As I drove away, I knew peace. I felt a deep satisfaction that I know will provide me energy and strength in my darker moments. I also know that it helped on my drive from Saint Louis Park to Alexandria. Two plus hours in the car - alone - is not always the best idea for narcoleptic, but I made the trip without a hitch. My friends the Barenaked Ladies and Mike Doughty helped me a great deal, but I also know that the energy filling me from MOONS factored in as well. I even know that I will be going to the September 6th meeting - even if it means that I need to miss the Heavyweights Tournament for tba (and it does). While I will be sad to miss out on a great ultimate tourney, I would be even more disappointed to not be a part of this incredible organization. I am even hoping to convince folks that we should offer smaller monthly gathering around the Twin Cities at which people can share their stories and simply connect. Heck, after today, I might even consider join the Narcolepsy Network and attending the national convention in October - it is in Milwaukee.
I am blessed in many ways, but the gift of today has been beyond the pale. To top it all off, I am in a hotel in Alexandria, MN hours away from watching one of my all time favorite students and friends graduate from high school. I am not sure why, but clearly God has decided to shower me with love (of course, I might have passed on the whole having narcolepsy part, but heck even that has its moments). In case you did not guess, I will likely write more (MUCH more) about MOONS. Just though I should warn you.
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