Sick, Sad, & Sulky Sunday

The cold/sinus infection that has been lingering for weeks seems to be winning this weekend. I am sure that the stress and tension of the past month has only added to the poor job that my immune system is doing in fighting it off. I would love to say that my week got better since my last post. Unfortunately, that would be a lie. I am more accepting of the impending realities, but the grief has truly become palpable. To make matters worse, I did write a letter and give it to my administrators. I thought it wise to request the meeting in writing and to let them know what I wanted to discuss. My principal had the letter for less than two hours before he returned it to me. He hand wrote a note on it informing me that he had no idea what I was writing about. The associate principal waited until the next morning to return the letter. She also wrote her response on it, offering that I was making assumptions. Neither of them gave any indication of being willing to meet. In between those two glorious moments, I blew up at my men’s group and deeply offended one of the other members of the group.

Needless to say, it was not a good week. I muddled through, though. On Wednesday, I finally approached my associate principal and asked to speak to her. She agreed, and we met on Friday. To top everything off, my wife had to leave town from Wednesday through Friday. Somehow, I held things together. My meeting on Friday with the associate principal was nearly as frustrating as my letter experience, but she at least listened to me. I am mildly encouraged that my department chair and the chairs of the other two departments involved are beginning to look at creating some “process” for filling future interdisciplinary options. It does not help me, but it might mean that no one else will every go through what I am right now. The one other “good” item from my meeting with the associate principal is that I can now approach some social studies teachers in hopes of convincing one of them to come teach this class willingly. My two worst fears are that the administration will either assign a teacher to do it (which would result in an unhappy co-teacher or a firing – if the person refused), or that someone will “volunteer” with whom I cannot work. In the end, I will slowly move forward, but my sadness will continue to well up for weeks, if not months, to come.

One of the hardest things to accept in all of this is how much I will lose simply because everything has come so naturally to my current team. All of three of us are excellent teachers and truly “get” how to work with teenagers. As a result, magically things happen in our room on a daily basis. No matter how well I learn to work with my next team, I know nothing will ever recreate the wonder that currently happens. And, I am mentally and emotionally conscious of that fact every day now. Thus, I will get to have 2-3 twinges of regret each school day for the next two months. I also know that I will rarely see my two current co-teachers once the year ends. The nature of their new course, the course I will be teaching with a new team, and my narcolepsy will all prevent regular interactions with them. In some ways that is a good thing. It would be hard to establish a solid rapport with my new team if I was constantly getting to interact with my current co-teachers. At the same time, a decent part of my daily motivation to get to work over the past two years has been knowing that I would see these two amazing people. Yet, it is now the reality, and I must continue to work towards acceptance of that.

Beyond the glum mood that my job has brought me, I am also fighting through depression about my health. I truly have not felt well for the entire month of March. I have no doubt that I have some infection, or at least inflammation in my sinuses. On top of that, something bizarre is happening with my left eye brow. I occasionally will find an ingrown hair in it, but things have been out of control for a few months now. The hairs in my eye brow seem more brittle, and in the process of trying to pluck the ingrown ones, I have pulled (and lost) a great deal of that eye brow. To make things even better, the hair that is growing back is doing so slowly and incompletely. The brow ridge even feels slightly inflamed to me. The last goofy health item is that my sleepiness/fatigue has felt overwhelming since Friday. I am sure that much of that is my immune system being overtaxed, coupled with the school stress and being a solo parent. Nonetheless, it is unnerving to worry about my ability to drive a mere hour after taking my stimulants. That is what happened to me on Friday. Saturday and today have been no better. I know that my narcolepsy can move in cycles, but the timing of this recent swoon is less than great. Not only was the house a mess when my wife got home, but also she and our daughter are leaving again Friday morning. They will be away for a week, and I will need to get the house in order (AND get our taxes done). If my current state persists through this coming week, it will be more than a little scary to do much driving, or to think about the work that I need to get done.

In the end, I know that my life will be what it is. This past weekend has been filled with bright spots, even though my mood is so foul. My wife, my sister, and I saw an amazing concert on Friday night. Dan and Matt Wilson (of Trip Shakespeare fame & Semisonic for Dan) played as a duo for 2 and a half hours. It was incredible. We also got to see our daughter do an outstanding job in her prelim race on Saturday morning. Finally, we have had some great family moments throughout the weekend. I just wish that I could enjoy those moments more, but the narcolepsy and my current job woes keep getting in the way. Fortunately, I only need to limp through three more days this week. Then, I get a long weekend. I do have to go to the National Catholic Educators Association Conference next week, but it will at least be a break from the classroom for a few days. Perhaps, April and the true arrival of spring will bring a bit more joy back into my life.

Furious, Frustrated, Fuming, and Frightened

My last two weeks nearly rival the despair, anxiety, and confusion of the final years of my medical odyssey to find a diagnosis. Nothing will likely top the desperation that I felt when I knew something was wrong, but no doctor could find a cause. Yet, the previous fortnight has tried like heck to compete. I share that at the start of this post as a disclaimer – this entry has little to no joy and a lot of pain. I would love to say it has been my worst two weeks that have nothing to do with narcolepsy, but in the end everything in my life connects to narcolepsy.

As hard as life has been in trying to live with this condition, one area that has brought me tremendous strength has been my teaching team. The two teachers with whom I work have made the last two years amazing – professionally and personally. I truly believe that we create magic in our classroom by engaging and empowering our students in meaningful and thoughtful ways. Sadly, unbelievably, horribly that will not be the case next year. Both of my co-teachers have been pressured and forced into teaching something else next year. Although both of them would prefer to remain with me in our current course, they have been cajoled and forced into a place that they believe that moving to the other course is the only option. Simply watching them wrangle with their emotions around this decision has been awful, but I also know that my own turmoil will be far worse. Although no “official” decision has taken place yet, my co-teacher from our Social Studies Department has notified his colleagues that someone needs to fill the two sections of our course that he had been teaching. My colleague who has been the religion teacher in our class does not need to send an email because another religion teacher already wants to take the spot. Fortunately, that other religion teacher has taught this interdisciplinary ninth grade course before. The same may not be true of the social studies teacher we get. In fact most of the department does not want to teach in interdisciplinary settings, which is part of the reason that my current teaching companions were stripped from me.

More mind-boggling than stealing me amazing colleagues from me, though, is the fact that NO ONE (other than my co-teachers) has spoken to me about this situation. The only reason that I know this is happening is my co-teachers has been open and honest with me throughout this nightmare. At the start of the school year a discussion took place in each of our three departments (English, religion, and social studies). A senior interdisciplinary course focusing on social justice would eventually be looking for new staff members because one of the two teachers who had done it for 20 years was starting to move toward retirement – ironically, the English teacher. The idea was to let your department chair know if you would be interested in the course in the next 3-5 years. Although a few members of my department notified our chair that they would be interested, my two co-teachers were the only religion and only social studies teacher to express interest. As a result of that, the courting of my co-teacher from religion began in December. Soon after that, it became apparent that the senior course needed a social studies teacher for next year. Numerous discussions began taking place, and even though my colleagues repeatedly stated that they wanted to teach with me for the coming school year, circumstances seemed to dictate that they had to move to the other course. Thus, their casual expression of interest in this course for the future suddenly became an immediate shift happening now. It is entirely possibly that the only person remaining on that senior course’s team from previous years will be the English teacher who is supposed to be moving toward retirement (hence the irony).

So, while my two amazing co-teachers unwillingly move to a new course, I am left holding the bag for this ninth grade class. Again, the likely incoming religion teacher has done the course for many years, and I have no doubt that I can work with her. I am more worried about establishing some level of team rapport when there is likely to be some strenuous arm-twisting to get the social studies teacher even into the room. I also remain appalled that nearly everything is set to pull my two co-teachers away from me, and I have yet to have a conversation with my administrators. Because my current team has evolved some excellent elements to this course, I definitely want to see them stay, but that puts me into a leadership role that may or may not be possible. My health aside, I work part-time at the school, making it difficult to give guidance to students and my new co-teachers during morning study sessions. Plus, the reason for my part-time status is my health. And, it has not been great this year with a team that I trust and is capable of picking up my slack. How it will go next year with new team members who are relying on me for leadership is anyone’s guess. Although I have minimized my sick days in the last few years, they do still happen – far more frequently when I feel compelled to do “more” and push myself to hard. Yet, I will have a more difficult time opting to make the wise decision of resting my body when I am the guiding curricular presence in the classroom next year.

At one level it is that reality that eats at me the most. I am a person with a disability. I have numerous gifts and talents, but my narcolepsy limits me. Many moments of doubt about continuing in my job had been surfacing for me even before this current nightmare arose because even my limited schedule has been wearing me down. I honestly do not know if I can lead this new team, and yet that will be the expectation. The fact that I have not been consulted at all in this process of dismantling my team would be unprofessional even if I were fully healthy, but the fact that I am a person with a disability makes it unethical. Beyond the possibilities of it over taxing my system and dismissing my worth, I have no clue how accepting my new team members will be of my condition. When my current team first learned that we would be teaching together, we spent one lunch period each week eating together to share our thoughts, goals, concerns, and dreams (professional and personal) simply as a way to get to know one another. We also met extensively throughout the summer, both to plan and to deepen our understandings of each other. Even with all of that, we still need to pause at times to check-in and to apologize to one another. As a result of those efforts, I know (even when I doubt my worth) that my colleagues respect me and understand when my narcolepsy drags me under and keeps me from getting all of my work done. It is a gift that I have never taken for granted, but one that I will sorely miss as I attempt to find those connections with my new team.

It also angers me that I do not have the opportunities to start getting to know my new team in the same way that I did my current team. One reason is that everyone in the building knew for months that a change would be taking place in one of the ninth grade teams when I opted to become the English teacher. My current team had weeks before the start of trimester three to decide to use one day a week for a team lunch. In this current situation, we are already two weeks into the third trimester, and people in the Social Studies Department are just beginning to contemplate if they want to teach this ninth grade course. The lunch possibility is also out because I need that time to recover most days from our first class. Plus, the nature of this course and the energy that my entire current team puts into it daily often means I have nothing left to do “future” planning. Even the possibility of summer planning is diminished. Our school has a number of strategic planning meetings this summer that might pull one of my new co-teachers away from planning time for our team. And, my wife has planned a summer trip for us for the first time in a few years because I finally did NOT need to use much of my summer for curriculum planning (my current team has spent the last two summers meeting extensively, so we all agreed that this summer would be light on team meetings – oops).

The last frustration I will share today is that I don’t even feel like I can grieve, or at least grieve properly. At one level I know I have been blessed to have this current team for two years. Both of my co-teachers are amazing, and the opportunity to teach with them will likely be the pinnacle of my career. Nothing is ever the same from year to year in education, but a shift like the one I face is colossal. Rather than experiencing sadness each time I watch my current colleagues do something, I want to appreciate it for how amazing it is. I also find it hard to release my emotions because the magnitude of my turmoil could completely derail me, which I cannot afford if I have any hope actually doing my job and being present for my wife and daughter. I am struggling mightily as it is. I shudder to think what I wreck I would be were I not deflecting some of my darker thoughts. When I do plunge into the muck this is dredging up in me, I feel like I am experiencing all five stages of grief and loss simultaneously. The anger, denial, depression, bargaining, and acceptance swirl in a dizzy dance because I can’t afford the time to settle into them. For right or for wrong, I know that all of this will weigh on me throughout the coming months and into the summer.

I do plan to confront my administrators in this coming week. It enrages me that I must approach them, but I hope some good can come out of this. Although the school has had numerous interdisciplinary classes for years, we do not seem to understand that departments can’t make decisions in isolation when it comes to interdisciplinary teams. The other point that I hope this current situation underscores is the importance of team-building within interdisciplinary teams. I have team-taught many times and in many ways, but my current team is the only experience that I have had that feels open and honest in its approaches – both inside and outside the instructional work. I undoubtedly have many tears left to shed for this catastrophic loss in my professional life. I love teaching, and my students are often the motivation that I have to overcome the fatiguing nature of narcolepsy, but my two current co-teachers bring out the best in me and daily push me to be better at my craft. My morning inertia will require an extra effort next year, knowing that my current team will not be waiting to greet me.

Freaky February Funk

Often, I find myself commenting on the bizarre nature of time. Much of the past year and a half has perplexed me because time seems to fly by as it lasts forever, a truly insane paradox. While I know that my daily emphasis on living in the moment is a primary reason for this strange sensation, I still find things that give me pause. This entire month of February is a perfect example. Given how much has happened in this month, I find myself in disbelief that it is not April – let alone that four days still remain in February. How the shortest month of the year could still be “happening” astounds me.

Perhaps nothing underscores this madness more than the fact that I feel like it has been months since I posted here, yet only 10 days have passed. I also find a modicum of pride in this entire experience because my health remains less than great. Even though I continue to struggle daily with the many quirks of narcolepsy, I have found ridiculous amounts of work getting done. In fact, the productivity that dominated my previous post continued through that Monday. Those three days amounted to the most productive weekend that I have had in years. I then found a way to push through the following four days of school. Even this past weekend, which was dominated by the return of significant reflux issues, went decently. My wife and I had a nice date at the “Gala” – a fun, silent and live auction event at our daughter’s school. Then, Sunday brought the most efficient meeting that the MOONS-MN planning group has ever had. I returned home to get MOONS-MN work done and finished the minutes for a meeting just days after the meeting had taken place.

But even those experiences cannot do justice to my experiences of the last few days. On Monday morning, I found myself on the bathroom floor when my entire lower back had a spasm. Although my back can be problematic, something like this has happened only once before – years ago at my wife’s parents home. That time, I tried to simply “walk it off.” When it happened a second time, though, I spent the next two days in bed. Since I could not afford to be laid up for a few days with the end of our trimester looming, I wisely opted to stay home on Monday. Somehow, I found the ability to get some work done even then. My back is still sore, and I am being cautious, but I made it to school both of the past two days. I even did a ton of teaching and helped my team members with a fun skit today. So, even though I am exhausted, sore, unsettled, and reflux-y, I am hanging in there – somehow. And, February is still here. Weird.

Strange, Stretched Saturday

Life with narcolepsy seems to get weirder and weirder at times. My wife and daughter are gone for the weekend. Often, having our house to myself has meant that I watch movies and lay around the house, especially when I have been pushing myself. Even though I have been driving myself at work, today was ridiculously productive (although I am disappointed that I have not done any correcting yet – gotta love anxiety issues). Although I did watch a movie this morning and took a few breaks during the day, I made significant progress on getting our home office cleaned. Much is still in disarray, but I have many things sorted. I have even filed some of the material in the appropriate places.

If I had just made a dent in the chaos of our office, I would call it a productive day. But, I also managed to clean the fish tank, to do my laundry, and even to make our bed. I do need to make more progress tomorrow, and that progress must include getting papers corrected. At the same time, it is unnerving to realize that I have been productive and still have two days of my weekend remaining. I don’t even think that I pushed too hard today, but the real judgment of that will come tomorrow. I will be overjoyed to find that I am only mildly exhausted (which is my “normal” on any given day).

I also need to note that I even found time to get some gifts and cards for Valentine’s Day. Often, this holiday is one that I dismiss, but I am so grateful for both my wife and my daughter that I thought it would be nice to acknowledge them, particularly because I am missing them dearly. It seems odd to say, but narcolepsy’s twists and turns constantly make my daily life interesting and unique.

Weird Waves of Wonder

My week has been bizarre. My energy seemed to wane throughout the week with each morning becoming more difficult. Yet, in the midst of that exhaustion, I managed to do some cleaning, to help out my team members by correcting our students’ quizzes and homework, and to get somethings done for a church group and for MOONS-MN. Today, I genuinely felt pride in my accomplishments this week, even in the face of narcolepsy rearing its head. Now, I need to figure out how to sustain that sense of self-worth for the length of an entire day. I certainly did not feel anything but disdain for myself this morning, yet most of my major accomplishments had already taken place. I know that I can let my anxiety overwhelm me, and I need to continuing finding ways to mitigate my self-denigration when the “should have” list becomes overwhelming.

I am heartened, though, that I can feel contented tonight, even though I have a mountain of unachievable goals for my weekend. Simply the fact that I still have 26 of my 28 student essays yet to correct should have me in a tailspin, yet I know I will get through as many as I can over the next three days. I had an amazing moment in the late afternoon today. One of my teaching colleagues had just returned to the room. She gave me a hard time for correcting all of the homework, but I reminder her that both she and our other co-teacher have tons going on right now. Even though my narcolepsy seems to be peaking right now, helping out my co-teachers in that way was something quite feasible for me. We spoke for a time, and I found myself in a place of deep peace. The reality of my life is that, even with my narcolepsy, I am overwhelmingly blessed. I have an incredible job, dear friends, and a loving family. Yes, narcolepsy has been an awful burden of late, but I must continue to embrace each day and every situation remembering the many gifts that I am given in my life.

As hard as it was to arise this morning, my moments of awe today are astounding. Today I witnessed the beauty and love of my wife, the giddiness and brilliance of my daughter, the joy of students having a half-day filled with silliness and intellect, the courage and verve of a colleague who is teaching and coaching with a severely injured hand, the casual cool of another colleague who blends the art and science of teaching with ease, the reward of having a diverse department that sees our curriculum and pedagogy from a myriad of perspectives but always with our students in mind, and the deep peace of kindness and a job well done. And, that list is just the highlights. Certainly, my body still feels awful, and my fatigue is growing, and my anxiety is whipping my mind into a frenzy. Those frustrations are omnipresent in my life, yet I can choose how much power I give them. I do wallow at times, and I need to do that. More often, though, I am able to recognize and own those struggles, while opening myself to the ubiquitous wonders that seem to bombard me hourly. The road remains long, but each step brings my closer to enjoying the journey more fully.

Winter Woes

I fully realize that the eastern seaboard of the United States has received more snow than the Midwest (at least this year), but I must declare that winter in Minnesota is awful. We are in the midst of yet another snow storm, and my driveway is full of snow. Unfortunately, our snow blower is on its last legs, and my wife and I are both exhausted. Even worse, my city is not declaring a snow emergency until tomorrow night. That might not be too bad if most of the side streets were relatively clear before this snow began last night, but the reality is that our side streets are still a disaster from the ridiculous ice and snow that fell in December (not to mention the multiple inches and melting/refreezing that took place in January). Thus, I will likely attempt to snow blow my driveway between 5 and 6 AM tomorrow. It will take an hour and wipe me out for the day. Then, I will need to get ready for my school day and battle the side streets all the way to my job. I have had one other day this winter when I did basically the same thing, but without any teaching. Between my narcolepsy and my exhaustion, the last dance with my snow blower and messy streets needed two to three days for recovery. I can only imagine how a full day of teaching will add to the fun that awaits me tomorrow.

The reality of winter’s impact on me, though, goes well beyond a two and a half day snow fall. Amid the snow and slush, the lack of daylight, and the frigid temperatures, I actually think the biggest issue is an instinctual impulse to hibernate. Like most higher order mammals in colder climates, humans must have a hibernation instinct. If we did not, how could we have survived before the development of heating systems and insulated homes. Perhaps most people can shake off the added urge to sleep, but as a PWN I find it insane that my brain and body can do even more to make me feel like I should sleep. I will push through tomorrow and the doldrums of February, but it will not be easy. I keep hoping that living with narcolepsy will get easier, but more and more I recognize that such thoughts are sheer fantasy. I continue to learn how to accept the ups and downs of my daily life, but tolerance is not ease. Not by a long shot.

Nonetheless, we are slowly gaining more light. And, eventually all of this snow will melt (hopefully sometime in late April or May). I will continue to work on mindfulness – being present in the here and now. That has served me well, even as I have struggled with my energy this year. More and more, I am able to let go of what might have been and of what might come. Instead, I ride the ebb and flow of each moment and each event. Being a Type A planner, that is neither easy, nor comforting, yet it is the right course of action. More than anything else I have done, mindfulness allows me to stay sane in the midst of the madness of narcolepsy. Of course, mindfulness is more fun when temperatures are not below the freezing point of water and when precipitation does not accumulate in white, fluffy inches.

Fighting February Funk

Many of my colleagues at school subscribe to the following axiom, “Never make major life decisions in February.” The logic is fairly simple. As an educator (particularly in Minnesota), no month of the school year is more difficult than February. Cabin fever is settling in completely – both for adults and students – as your students are also reaching their breaking point in terms of tolerance for the tedium of the U.S. educational system. On top of that, at least in Minnesota, the weather is rotten and overcast. And, you often go the entire month with only one extra vacation day. I share all of that because I have the feeling that the next 27 days will require me to repeat the aforementioned axiom as a meditative mantra.

I have clearly felt the bite of my narcolepsy more strongly over the past week and a half. Clearly, I am pushing too hard again, yet I don’t know how else to handle the demands of my job, my family, and my sanity. I arrived at school today knowing that I had not only gotten some extra correcting done over the past weekend, but also I had even gotten two of the papers I received last Friday corrected already. That is a huge accomplishment for me. Unfortunately, I found little pleasure in it. The day was fraught with problems and concerns. Somehow, my colleagues and I need to fit the Middle Ages, the Renaissance, and Romeo & Juliet into the last three weeks of February. We also need to get our students registered for next year, fit in a couple of fun days, find space for chapel time, and still manage to keep them sane and motivated. All of that angst piled into the first 45 minutes of my day, as I also realized that both of my co-teachers are definitely fighting a cold.

Then, our students arrived. They had only one thing to do this weekend – read a fairly engaging piece of historical fiction to get a feel of an Ancient Roman city. Out of 41 students in our first class, at least 16 failed to do that. The numbers grew in our second class – 23 out of 42 did not read. Those numbers fail to count the students who said they did read that then failed to get more than 1 or 2 items correct on the 5 point reading check. Fortunately, we weathered that well and got the students going on some research. Although my students’ apathy bummed me out, it did not ruin my day. That would come after school.

As if my day had not drained me enough, I left school in a mild snow storm, realizing that I would have a long afternoon of driving. Picking up my daughter, I learned that she had been removed from her school’s gifted and talented program. Now, as an educator, I fully realize that many things need to be factored into how a gifted and talented program is run. The stunning issue today, though, was that my daughter was removed for her grades, but she had an “A-” average in the previous quarter. I also know that the supervising teacher firmly believes in multiple intelligences, which would make it strange that a student would be removed for “poor grades.” Nonetheless, I got to deal with a distraught thirteen-year-old on the way home. I could not even spend time in our house comforting her, though, because I had an ENT appointment. I was slightly late arriving there because of the snow, but they got me in immediately. Then, I had a much longer ride home (after a lengthy phone call with my wife regarding our daughter) because traffic slowed down even more with the snow.

Thus, I find my head already swimming, and February is not even 24-hours-old yet. The month does not bode well. I have no doubt that ups and downs await in the 27 days ahead, but I also know that my narcolepsy will make it that much tougher to bear those trials and tribulations. I will work to avoid major life decisions and to appreciate the experience of each moment. I also know that I will wallow at times because my energy level seems to be dipping again. In the end, though, I must remember how little I do control. Life and narcolepsy will be what they are. That is okay. I will work to accept everything that comes, and I will forgive myself when I rail against the injustice of my condition.

Somewhat Successful

Sadly, I am writing well past my bed time, yet again. That said, I am handling things decently. Over the last few years, I have struggled mightily when I have gone back to work after longer breaks. Regularly, my expectations are far too high. Needless to say, I worried that returning to school after not only a break, but also a medication holiday, would turn me inside out. Instead, I managed to lower my goals for the week, and I cut myself a break, knowing that my transition back never goes well.

I certainly have battled my anxiety since school restarted on January 4, but I have been far kinder to myself. I still have far too many papers to correct, but I have greatly minimized my self-abuse. While I know I need to get those done – soon – I am also doing a much better job of remaining focused on each moment of each day. Rather than torturing myself for not finishing my correcting, I am at peace that I have done a good job of developing new curricular pieces and being prepared for my daily work. Even more importantly, I have done a good job of helping my wife and daughter within our home. I take great pride in taking another step down the path of learning how to manage my narcolepsy. Invariably, I will spiral out of control numerous times as I continue this journey, but I will cling to the knowledge that I have plenty of day that are wonderful because I can embrace the chaos that narcolepsy brings without losing my mind.

I definitely need to continue improving my kindness to myself. I remain too quick in my self-deprecation. Beyond that, I must establish a routine of exercise and yoga. My increasing waist line demands that, but more importantly my psyche needs the peace that yoga and exercise bring to me. My short term goal for this week is to take the first step by doing one or the other before Sunday, January 17. It helps that I will have Monday, January 18, as a recovery day (since exercise tends to drain me completely of late). Nonetheless, as hard as things are and as rotten as I feel, my hope is high and my outlook good.

Doctor Disappointments

Yesterday, I had my last appointment with my current psychiatrist. He is retiring. Although I only see him for 20 minutes every 6 months, I will miss those appointments. My therapist has been a far better help as I continue to learn how to live with narcolepsy, but my psychiatrist definitely made an impact on me in our limited contact. Unfortunately, I have no idea who I will start seeing now. His position will remain vacant for at least 6 months, and the clinic is so overwhelmed that no one else is taking new patients for at least 3 or 4 months. Thus, I am adrift yet again. Fortunately, I have at least a year on my fluoxitene prescription, which is the med that my psychiatrist wrote for me, but I would like to continue to see someone.

Interestingly, my psychiatrist asked me about my “neurologist,” assuming that I see one for my narcolepsy. I tactfully said that I see a pulmonary specialist for my narcolepsy. We then chatted about how frustrating it can be with a disease like narcolepsy. Most diseases and conditions are handled by the doctors who specialize in that body system, but sleep issues affect MANY systems. Thus, the original sleep doctors were primarily psychiatrists. Certainly, some neurologists became interested, but there are so many neurological conditions that most neurologists have almost no experience with sleep issues (even narcolepsy). Due to the huge (and growing) numbers of people with obstructive sleep apnea (OSA), many pulmonary doctors achieved sleep certification, but most of them only handle OSA. They can diagnose more “classic” narcolepsy, but rarely recognize the wide variety of ways that narcolepsy can impact PWNs. Unfortunately, some pulmonary doctors have NEVER actually handled a narcolepsy case. One of my PWN friends was told by her initial doctor that he was transferring her to a different doctor because he had no idea what he should prescribe for her when her PSG and MSLT showed narcolepsy. Finally, the number of ENTs with sleep certification is also growing. Sadly, those doctors are also focused on OSA. The new research that has provided narcolepsy with cataplexy is definitely an auto-immune disease has raised hopes that immunologists will begin looking at sleep, but the bottom line is that most PWNs struggle to find a decent doctor.

My conversation with my retiring psychiatrist reminded me of my own frustrations with my current sleep doctor. Even though he is a pulmonary doctor, he does know a decent amount about narcolepsy, but he did not even talk to me the last time I was at his office. For him, it is all about getting me the right meds. I wish there was a decent neurologist in the Minneapolis/Saint Paul area who treated sleep issues, particularly narcolepsy. The only person I know of was not practicing until recently, and she could only begin working again recently in southern Minnesota. She is also a dear friend which would make it awkward for her to be my neurologist. A fantastic neurologist (almost as good as my friend) practices in Saint Cloud, but that is an hour and a half drive. Plus, I will likely have to pay for the appointments out of my own pocket. At the same time I desperately want to see a doctor who honestly gets narcolepsy. I must admit that my deepest desire would be to find a neurologist who specializes in sleep that is also a PWN. I firmly believe that many PWNs would travel across the country to such a doctor. Who knows, maybe someday!

Knightly Commentary

This blog is an adventure in discovering who I am, particularly as I learn to live with my friend, narcolepsy. While the disease has drastically impacted my life, this blog will also reflect the many things I do and love that narcolepsy won't and can't take away. More than anything, this blog will be about me returning to health. If that helps or entertains or amuses or upsets others, so be it. I just know that I need to write about where I am and where I'm going. Thanks.

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