Somehow, I have managed to let another month pass without posting. Writing about this crazy condition is vitally important to me, but the "basics" of my life have felt horribly overwhelming. I also think that either my narcolepsy is intensifying, or my amphetamine is diminishing in its impact. of course, there is actually no way to determine that. All I know is that I have continued to "cut back" what I do, and I still find it harder to do this lightened load - which I find horribly frustrating.
My school year is actually going well. I have been better about correcting and more prepared for my teaching. I am also doing a better job of limiting myself to my part-time hours, rather than spending excessive amounts of time at school (well outside of my contract time). That being said, the year has also been tremendously draining. Our teaching team was tremendously successful last year, but I think we are all feeling pressure to be "better." While I think we are doing that, we are putting stress on ourselves. We have also developed a new approach to homework. It works well for many of our students, but two groups are struggling. Our students with poor time management skills are not spacing out their work and turn in poorly done materials. On the other hand, our overachieving students have been trying to do two to three hours of homework each night. Our expectation is that student would spend two to three hours maximum per week. As a result, we faced a number of questions at conferences from parents and guardians. Thankfully, most of them accepted our explanation, but a few still felt like we should change what we are doing because their daughter or son was continuing to do two to three hours per night. I am empathetic, but fail to see how we are causing the problem.
The other thing contributing to my struggles is the bizarre course of events over the last two months in my house. Our September had more activities and events that I can ever remember us having. The worst weekend involved my wife getting me at school at 2:45 PM on a Friday. We spent the next three hours and thirteen minutes traveling to Duluth (a trip that should take about two hours). We arrived for a family wedding with two minutes to spare (literally). Then, we checked into the hotel and attended the reception. I then got up early the next morning to drive my daughter back to the Saint Paul for a voice lesson. It was her first lesson, and the directions given by the organization were flawed to say the least. We managed to arrive only two minutes late for the voice lesson, but the stress of it all buried me. My wife had stayed in Duluth. When she returned on Sunday, I was still recovering, but there was a tremendous amount of work that needed to be done. I pushed myself to do it, and I exploded at my family. Then, I got to school on Monday so exhausted that my team members sent me home. It has been rocky since then, but is finally beginning to level out.
In the midst of all of that, my relationship with Narcolepsy Network turned markedly sour. They let their web master go and cut those of us who were moderators from access to the primary tool that we used to help moderate the site. When I emailed to express my disappointment in the entire situation, I received two emails. One was heartfelt and personal, explaining that I was a valued resource. The other was a generic message to all of the current moderators, saying essentially the same thing. Unfortunately for Narcolepsy Network, they thought the first version of the generic message to me did not work, and thus they forwarded the template. Because of that I learned that they had sent the same message to two moderators who had done nothing for over six months. Both of those individuals had been alienated by the inaction and the rude comments of board members. I then wrote an even more terse email questioning how they could "value" my work when they clearly had no idea what moderators were active and which were not. The sad reality is that many of the board members STILL have not gone to the forums, even after the things that took place. As a result of it all, I have done little online posting - at Narcolepsy Network or on Facebook. I am even struggling to do work for my local support group (which I essentially help to run). I just hate the idea of spending hours working on things, only to have some uninformed baord member swoop in and yank it away. Much of my frustration with the Narcolepsy Network centers on a new website that the web master was developing. He had is essentially ready to go live last November, but the board would never approve it. I personally spent well over 20 to 30 hours writing and editing content for the site, but never heard anything from the board, particularly the ones who were supposed to be overseeing the site. The even more irritating part is that while the new site was constantly being labeled as "un-ready," the current Narcolepsy Network site was live and contained far more errors and inaccuracies than the "un-ready" site. Because the web master is my friend, I stuck with the process, hoping that we would eventually be given approval. Instead, they fired him. Certainly, there may be legitimate reasons for what they did, although I have serious doubts. Even more unbelievable is that after hearing nothing about my work for the site, or about the quality of my writing, I received praise from three board members and a couple of employees of Narcolepsy Network.
I still want to "help" others with narcolepsy, but my own struggles are making it hard. I am heading to the national convention for Narcolepsy Network at the end of this week. I do plan to touch base with one member of the board to see if I can learn more about everything that happened. At the same time I remain unimpressed by the things I continue to see from Narcolepsy Network. For instance, even though I have clearly stated that I am not "helping" them at this time, I am STILL receiving emails from the people planning the conference. Today's series of emails was wonderfully ironic. Since all of the forum moderators "resigned" (after we were cut off), the board is hoping to find "motivated moderators" for the forums. Someone came up with the line, "We want MM for NN" - with "MM" refering to "motivated moderators." Since my initials ARE MM, I was sorely tempted to respond to the email, "You had MM, but chose to get rid of him," but felt like it would be sour grapes. In the end, it drives me crazy that the one national organization for people with narcolepsy seems to be clueless when it comes to growing the organization and to helping the vast number of PWNs who are searching for a lifeline while they are online.
Showing posts with label Anger. Show all posts
Showing posts with label Anger. Show all posts
Sunday, October 18, 2009
Saturday, August 8, 2009
Travel Tension
On the whole, today has been great, but as was the case on the way down to Tennessee, narcolepsy did choose some choice moments to rear its ugly head. In an attempt to create a smooth departure this morning, we all packed last night. Ironically, that effort paid off for us (those things usually backfire in some way). We were on the road by 6:25 AM - a significant improvement from a week ago Friday (when our 6 AM departure turned into 8 AM). My wife was on edge as we left, but I knew that she was definitely sick still, and her angst quickly passed.
The problem, though, was that due to my wife's illness I needed to drive more than I had on the way down. I took my first driving shift right after we entered Kentucky. I managed to get us passed Lexington, which was over 100 miles of our trip. I drove for nearly an hour and a half. Unfortunately, I found myself in heavier traffic toward the end of that time (no doubt due to passing through Lexington). Still, I handled things well, but I could feel some tension building. My wife definitely gets worried as I begin to fade behind the wheel. Still, I was pleased that I drove that far and helped out that much.
Because it was so early, we continued to push on. My wife drove us into Indiana. We finally stopped for lunch at this great little restaurant in Scottsburg (Jeeves & Company). Our lunch was wonderful, and I took my second dose of amphetamine right after we ate. My wife definitely needed me to drive again. I knew that I was already exhausted, even with the stimulant, but felt I had no other choice. Thus, I got behind the wheel and knew that I would be fine in terms of safety. The problem was that driving would take all of my energy. My wife dozed during some of the time, but she woke up as we began approaching Indianapolis. Like Lexington, traffic began to get dicey as we approached the metropolitan area. Finally, a truck cut into the left lane (at 65 mph) when the car in front of me and I were both moving at 80 mph. Needless to say, I was furious. I then drove through the next 30 to 40 miles in rapid, lane-shifting traffic. I wanted to get us around Indianapolis before switching. But, the speed and my bad mood made my wife more and more anxious.
When we finally reached an exit that would allow us to switch, I was attempting to explain my awful mood to my wife. Sadly, the gas station we wanted to reach was not immediately at the exit, AND the bottom of the ramp was incredibly confusing. I did make the correct decision, but had no way to know that at the time. Because every ounce of energy that I had was going into keeping the car on the road safely, I derided myself for the rotten signage. This only upset my wife more. After the mile had almost passed, we were approaching a different interstate and could not see the gas station. Because I was so far gone, I cut my wife off as she was attempting to "help" me. I plead with her to say nothing and to let me figure out how to find the gas station. Seconds later, I spotted it just passed the other interstate, but she also saw it and chose to let me know where it was. That definitely sent me into a tailspin.
I got us to the station, and we snapped at each other about the situation. We soon reconciled, but as I got out right after the initial exchange, I was literally shaking aas I was pumping the gas. I had nothing left from the driving. In fact, I nearly exploded when the pump failed to print my receipt. Fortunately, my wife had already apologized to me. I managed to walk (or stomp) inside and nicely ask for a copy. I then apologized to my wife and again attempted to explain how hard such a situation is for me. It drives me nuts that my energy is so limited in moments like that. I truly did not have the ability to interact with her (or myself) civilly because I needed all of my mental accuity to keep us safe in the car. That is crazy, but it is also reality.
Fortunately, my wife and I are exceptional at sharing, listening, and forgiving. I know that she meant well, and she knows that I truly did not try to upset her. She also appreciates that I did much more of the driving today. She still did the majority, but I did drive for over 3 hours and handled over 200 of our miles. Narcolepsy will certainly continue to be a bane - in my travels, in my marriage, in my life. But, I must simply continue to accept what it gives me and make the best of each day. Gratefully, we got to our hotel by 3 PM and have had a slow evening to gather strength for tomorrow. We are all excited to get home. I hope that tomorrow goes well and that my narcolepsy lets me have enough strength to drive and to be kind even when the roads are tense.
The problem, though, was that due to my wife's illness I needed to drive more than I had on the way down. I took my first driving shift right after we entered Kentucky. I managed to get us passed Lexington, which was over 100 miles of our trip. I drove for nearly an hour and a half. Unfortunately, I found myself in heavier traffic toward the end of that time (no doubt due to passing through Lexington). Still, I handled things well, but I could feel some tension building. My wife definitely gets worried as I begin to fade behind the wheel. Still, I was pleased that I drove that far and helped out that much.
Because it was so early, we continued to push on. My wife drove us into Indiana. We finally stopped for lunch at this great little restaurant in Scottsburg (Jeeves & Company). Our lunch was wonderful, and I took my second dose of amphetamine right after we ate. My wife definitely needed me to drive again. I knew that I was already exhausted, even with the stimulant, but felt I had no other choice. Thus, I got behind the wheel and knew that I would be fine in terms of safety. The problem was that driving would take all of my energy. My wife dozed during some of the time, but she woke up as we began approaching Indianapolis. Like Lexington, traffic began to get dicey as we approached the metropolitan area. Finally, a truck cut into the left lane (at 65 mph) when the car in front of me and I were both moving at 80 mph. Needless to say, I was furious. I then drove through the next 30 to 40 miles in rapid, lane-shifting traffic. I wanted to get us around Indianapolis before switching. But, the speed and my bad mood made my wife more and more anxious.
When we finally reached an exit that would allow us to switch, I was attempting to explain my awful mood to my wife. Sadly, the gas station we wanted to reach was not immediately at the exit, AND the bottom of the ramp was incredibly confusing. I did make the correct decision, but had no way to know that at the time. Because every ounce of energy that I had was going into keeping the car on the road safely, I derided myself for the rotten signage. This only upset my wife more. After the mile had almost passed, we were approaching a different interstate and could not see the gas station. Because I was so far gone, I cut my wife off as she was attempting to "help" me. I plead with her to say nothing and to let me figure out how to find the gas station. Seconds later, I spotted it just passed the other interstate, but she also saw it and chose to let me know where it was. That definitely sent me into a tailspin.
I got us to the station, and we snapped at each other about the situation. We soon reconciled, but as I got out right after the initial exchange, I was literally shaking aas I was pumping the gas. I had nothing left from the driving. In fact, I nearly exploded when the pump failed to print my receipt. Fortunately, my wife had already apologized to me. I managed to walk (or stomp) inside and nicely ask for a copy. I then apologized to my wife and again attempted to explain how hard such a situation is for me. It drives me nuts that my energy is so limited in moments like that. I truly did not have the ability to interact with her (or myself) civilly because I needed all of my mental accuity to keep us safe in the car. That is crazy, but it is also reality.
Fortunately, my wife and I are exceptional at sharing, listening, and forgiving. I know that she meant well, and she knows that I truly did not try to upset her. She also appreciates that I did much more of the driving today. She still did the majority, but I did drive for over 3 hours and handled over 200 of our miles. Narcolepsy will certainly continue to be a bane - in my travels, in my marriage, in my life. But, I must simply continue to accept what it gives me and make the best of each day. Gratefully, we got to our hotel by 3 PM and have had a slow evening to gather strength for tomorrow. We are all excited to get home. I hope that tomorrow goes well and that my narcolepsy lets me have enough strength to drive and to be kind even when the roads are tense.
Thursday, July 23, 2009
Doctor Downer (and difficult decision)
Seven weeks ago, I got a letter from my sleep doctor's office. Bluntly, it told me I better get in to see him, or they would stop filling my prescriptions. I called immediately, and today was the earliest appointment available. Given the tone of the letter, I checked if an appointment today would suffice. The individual assured me that things would be fine, as long as I had this appointment on the books. And, she was right. I got my July prescriptions in the mail, and my Xyrem was renewed without any hassle. Now, I have been wondering what my doctor would say, since I was basically 5 months late in coming into my appointment. Also, given my current state of mind, I was not completely sure what I would hope to discuss with him. I am handling things well, but I certainly would be open to exploring a different med, or looking at how my days tend to ebb and flow.
Invariably, I was ten minutes late to my appointment. A nice physician's assistant brought me back and did the initial intake. I told her that things were about as good as I thought they could be. I did not go into significant detail because I figured that I would have to say things twice. My BP was a tad high 130/90, and my weight still remains far too high. Their scale had me at 198, and I was 195 at home this morning (wearing fewer items of clothing). I did mention that I might want to discuss a different med, but also noted that NuVigil might not be the right direction since I had a terrible time with Provigil. I mentioned the relative success of my two medication holidays. She then left the room to let my doctor know that I was ready.
She then returned less than 5 minutes later. My sleep doctor felt that "as long as things are working, we should not switch meds." He also told her that unless I "needed" to see him, I was free to go. Now, I debated briefly about asking to stay so I could at least see him, but quickly decided that there would be little purpose in doing that. After all, I was still unsure as to what I hoped to discuss with him, and I was late for the appointment. So, I gathered my things and took my leave of the office. In the ultimate irony, the physician's assistant ask ME when I was supposed to return. I informed her that I had stretched my previous six month check-in by five months. I then said six months might make sense. And, as happened the LAST time I was in that office, the receptionist informed me that they do not schedule February appointments now. I need to call in November.
Of course, my PWN brain managed to put off that previous November phone call until I got the stern letter. I also was a tad flabbergasted that after the nature of that correspondence, I was not even SEEN by my doctor. I am sure that the physician's assistant is a sharp young woman, but she is not a specialist licensed to practice sleep medicine. It also does not help my mood that I did have time when she left the room to flip through the clinic's latest newsletter. While they "might" have cover Dr. Mignot's ground-breaking discovery in their Spring newsletter, the Summer one that was in the room had NOTHING about narcolepsy in it. It had lots on obstructive sleep apnea and lots on restless leg syndrome, but nothing about this wacko disease of mine. Of course, the clinic only employs pulmonary doctors, so I should not expect much. Except I do! If a clinic is supposed to treat narcolepsy, shouldn't they know something about it? Now, my doctor is a good guy, and he does know a decent amount about narcolepsy, but I think today is strong indication that I need to find a new doctor/clinic. Unfortunately, there are not other options, at least not good ones. Most other places in the Twin Cities are also pulmonary clinics. The one that is not tends to have a ridiculously narrow view of narcolepsy, meaning that they might actually tell me that I do NOT have narcolepsy. The added complication is that if I go somewhere else, they might be worse and could possible change my drugs in ways that make it impossible for me to work.
Sadly, I don't feel like I have any good choices here. I can stay where I am, continue to figure out on my own (and with my many PWN friends) how to handle this condition, and ensure that I can at least receive drugs that seem to work for me. The downside is that I might not EVER talk to my "doctor" again. And, if I do "need" to see him, will he honestly have genuine suggestions for me? Of course, leaving presents the possibility of finding a great doctor who can help me better understand myself and my disease, but that does not feel likely. In fact, I am honestly more worried that my current options (other than my actual clinic and doctor) would likely do more harm than good. The idea of having to re-tell my story (or even to be re-tested) while possibly being disparaged because my diagnosis is narcolepsy without cataplexy (or possibly mild/abnormal cataplexy which the guidelines still call "without cataplexy"). In fact, if that happened, it might be far more disrupting than just the mental stress. I might lose the meds I have, and if I can't work, I would also likely lose the small chance that I would have of a disability situation (if I don't have "narcolepsy," I have some condition of unknown etiology which would mean in legal terms that people think I am lazy).
Fortunately, I am not freaking out over this, but I do need to ponder a next step. I am not sure where to start. I know that there is an excellent neurologist in Saint Cloud, but have been remiss to try to see him because I doubt that insurance will cover it. And, I have no idea of how I would prove to my insurance company that I can't get proper care in the Twin Cities when many other PWNs "do." I actually know that they don't, but we are such a small population that it is easy to make blanket statements, particularly for large companies. Perhaps I am most frustrated by the fact that this brief stop in my doctor's office has added yet one more level of stress to my already growing anxiety of late. I truly do not have the time or the energy to commit to the process of searching for a new doctor. I also know that I hate the idea of "popping" into this office once or twice a year to simply pretend that my doctor checked on me.
Invariably, I was ten minutes late to my appointment. A nice physician's assistant brought me back and did the initial intake. I told her that things were about as good as I thought they could be. I did not go into significant detail because I figured that I would have to say things twice. My BP was a tad high 130/90, and my weight still remains far too high. Their scale had me at 198, and I was 195 at home this morning (wearing fewer items of clothing). I did mention that I might want to discuss a different med, but also noted that NuVigil might not be the right direction since I had a terrible time with Provigil. I mentioned the relative success of my two medication holidays. She then left the room to let my doctor know that I was ready.
She then returned less than 5 minutes later. My sleep doctor felt that "as long as things are working, we should not switch meds." He also told her that unless I "needed" to see him, I was free to go. Now, I debated briefly about asking to stay so I could at least see him, but quickly decided that there would be little purpose in doing that. After all, I was still unsure as to what I hoped to discuss with him, and I was late for the appointment. So, I gathered my things and took my leave of the office. In the ultimate irony, the physician's assistant ask ME when I was supposed to return. I informed her that I had stretched my previous six month check-in by five months. I then said six months might make sense. And, as happened the LAST time I was in that office, the receptionist informed me that they do not schedule February appointments now. I need to call in November.
Of course, my PWN brain managed to put off that previous November phone call until I got the stern letter. I also was a tad flabbergasted that after the nature of that correspondence, I was not even SEEN by my doctor. I am sure that the physician's assistant is a sharp young woman, but she is not a specialist licensed to practice sleep medicine. It also does not help my mood that I did have time when she left the room to flip through the clinic's latest newsletter. While they "might" have cover Dr. Mignot's ground-breaking discovery in their Spring newsletter, the Summer one that was in the room had NOTHING about narcolepsy in it. It had lots on obstructive sleep apnea and lots on restless leg syndrome, but nothing about this wacko disease of mine. Of course, the clinic only employs pulmonary doctors, so I should not expect much. Except I do! If a clinic is supposed to treat narcolepsy, shouldn't they know something about it? Now, my doctor is a good guy, and he does know a decent amount about narcolepsy, but I think today is strong indication that I need to find a new doctor/clinic. Unfortunately, there are not other options, at least not good ones. Most other places in the Twin Cities are also pulmonary clinics. The one that is not tends to have a ridiculously narrow view of narcolepsy, meaning that they might actually tell me that I do NOT have narcolepsy. The added complication is that if I go somewhere else, they might be worse and could possible change my drugs in ways that make it impossible for me to work.
Sadly, I don't feel like I have any good choices here. I can stay where I am, continue to figure out on my own (and with my many PWN friends) how to handle this condition, and ensure that I can at least receive drugs that seem to work for me. The downside is that I might not EVER talk to my "doctor" again. And, if I do "need" to see him, will he honestly have genuine suggestions for me? Of course, leaving presents the possibility of finding a great doctor who can help me better understand myself and my disease, but that does not feel likely. In fact, I am honestly more worried that my current options (other than my actual clinic and doctor) would likely do more harm than good. The idea of having to re-tell my story (or even to be re-tested) while possibly being disparaged because my diagnosis is narcolepsy without cataplexy (or possibly mild/abnormal cataplexy which the guidelines still call "without cataplexy"). In fact, if that happened, it might be far more disrupting than just the mental stress. I might lose the meds I have, and if I can't work, I would also likely lose the small chance that I would have of a disability situation (if I don't have "narcolepsy," I have some condition of unknown etiology which would mean in legal terms that people think I am lazy).
Fortunately, I am not freaking out over this, but I do need to ponder a next step. I am not sure where to start. I know that there is an excellent neurologist in Saint Cloud, but have been remiss to try to see him because I doubt that insurance will cover it. And, I have no idea of how I would prove to my insurance company that I can't get proper care in the Twin Cities when many other PWNs "do." I actually know that they don't, but we are such a small population that it is easy to make blanket statements, particularly for large companies. Perhaps I am most frustrated by the fact that this brief stop in my doctor's office has added yet one more level of stress to my already growing anxiety of late. I truly do not have the time or the energy to commit to the process of searching for a new doctor. I also know that I hate the idea of "popping" into this office once or twice a year to simply pretend that my doctor checked on me.
Sunday, June 21, 2009
Sunday Struggles
Today is Father's Day, and yet the only real emotion I have managed is frustrated anger. We went to a Minnesota Twins game last night to see an old friend. The game was good, except that the Twins lost, but we got home late. Because I had food at the game past 8 p.m., I stayed up until 11:15. When I finally took my Xyrem and went to bed, I was overly warm. My wife and I were intimate for a time, but things just were not right. Plus, the Xyrem can make me more than a little goofy. I did finally fall asleep. I even managed to take my second dose last night, although I once again slept through my alarm.
When I awoke, however, my wife was missing. Due to her discomfort, she was sleeping on the futon in our basement. I checked on her and returned to bed. I awoke this morning at 8 a.m. While I had rested, I already felt the stress of the day. I am behind at MITY (my wonderful gifted and talented students are producing at record levels this year), and there is far too much that needs to get done around our house. Unfortunately, between my exhaustion and the Twins game on Saturday, I got nothing done. Thus, I climbed out of bed already wondering how I would get to everything on my mental list.
My wife and daughter eventually got up too. They had planned to play some tennis before the day got warm. When they left, I decided to use the time to get in some exercise. I had only done a tiny amount on Saturday and am feeling worse about my physical condition than I did a week ago when I re-started my exercise. While the exercise went okay, I was trying new yoga poses in the end. Invariably, my wife and daughter arrived back home in the midst of that. My daughter immediately plunked down to "watch" since Wii can become a bit of a spectator sport. Although I was self-conscious, I refrained from saying anything. Then, as I began to attempt the final yoga pose - which I was incapable of performing - my wife also arrived. At she sat down, a chair we have owned for thirteen years suddenly lost a bolt. My wife began to let me know that I need to fix the chair when I got done with my exercising.
Sadly, I snapped at that point. Things only got worse when I realized that the bolt that came loose was in a ridiculously difficult area. It literally took me over 30 minutes to fix this one bolt. AND, when I finally set the chair upright, one of the two washers that HAD been on the bolt, once again fell to the floor. Somehow, I had managed to let that come off in my efforts. Needless to say, that final insult did little to dispel my rotten mood.
Of all of the things that have happened today, I am most upset about losing my cool with my wife. I know that no one was trying to make me feel bad or undermine my day, but I lashed out because I felt like that is exactly what was happening. And, of course, I have allowed the majority of the day to slip away because I have been wallowing. I also exhausted myself between the exercise and the (literal) wrestling with the broken chair.
Days like today are the ones that truly infuriate me in terms of my narcolepsy. Consciously, I know that I am wiped out because I am trying to do too much by teaching these two weeks at MITY. Yet, I still consciously and sub-consciously expect that I should also be able to do "normal" things during the weekend. Our house needs to be cleaned, our finances need updating, our windows need staining, and our office needs organization. Even though I literally can't do even one of these things, I feel like I should be able to do something. Worse, I know that my wife needs me to get to some of these things. The state of our house is weighing on her too. But, I am unable to do it. Thus, I get angry at myself for letting her down too.
Which brings me back to the fact that today is Father's Day. Instead of relaxing and celebrating with my family, I have yelled at the two people I love the most. I have also pouted because the day has not felt at all like "my day." Lastly, I don't even feel like I can make things much better right now because I can barely think straight. My body is tired, and my internal turmoil is paralyzing even the remote chance that I will get anything done - including the massive number of pieces from my students (which will only make me MORE stressed out tomorrow).
I know this day will pass. I know that tomorrow will be okay. I know that MITY will be fine and that the class is good. I know that my wife and daughter still love me. I know that my physical fitness will be what it will be. But, I can't feel it, and I hate that. Days like this are horribly bleak. Yes, I can (and likely will) get at least one thing done, but I won't even enjoy that. More than anything, I just wish in moments like this that nothing was "my responsibilty." I know that is an impossibility, but I feel overwhelmed by the frustration and sadness that I have once again "lost" a day (and a bit of my sanity) to this rotten disease.
When I awoke, however, my wife was missing. Due to her discomfort, she was sleeping on the futon in our basement. I checked on her and returned to bed. I awoke this morning at 8 a.m. While I had rested, I already felt the stress of the day. I am behind at MITY (my wonderful gifted and talented students are producing at record levels this year), and there is far too much that needs to get done around our house. Unfortunately, between my exhaustion and the Twins game on Saturday, I got nothing done. Thus, I climbed out of bed already wondering how I would get to everything on my mental list.
My wife and daughter eventually got up too. They had planned to play some tennis before the day got warm. When they left, I decided to use the time to get in some exercise. I had only done a tiny amount on Saturday and am feeling worse about my physical condition than I did a week ago when I re-started my exercise. While the exercise went okay, I was trying new yoga poses in the end. Invariably, my wife and daughter arrived back home in the midst of that. My daughter immediately plunked down to "watch" since Wii can become a bit of a spectator sport. Although I was self-conscious, I refrained from saying anything. Then, as I began to attempt the final yoga pose - which I was incapable of performing - my wife also arrived. At she sat down, a chair we have owned for thirteen years suddenly lost a bolt. My wife began to let me know that I need to fix the chair when I got done with my exercising.
Sadly, I snapped at that point. Things only got worse when I realized that the bolt that came loose was in a ridiculously difficult area. It literally took me over 30 minutes to fix this one bolt. AND, when I finally set the chair upright, one of the two washers that HAD been on the bolt, once again fell to the floor. Somehow, I had managed to let that come off in my efforts. Needless to say, that final insult did little to dispel my rotten mood.
Of all of the things that have happened today, I am most upset about losing my cool with my wife. I know that no one was trying to make me feel bad or undermine my day, but I lashed out because I felt like that is exactly what was happening. And, of course, I have allowed the majority of the day to slip away because I have been wallowing. I also exhausted myself between the exercise and the (literal) wrestling with the broken chair.
Days like today are the ones that truly infuriate me in terms of my narcolepsy. Consciously, I know that I am wiped out because I am trying to do too much by teaching these two weeks at MITY. Yet, I still consciously and sub-consciously expect that I should also be able to do "normal" things during the weekend. Our house needs to be cleaned, our finances need updating, our windows need staining, and our office needs organization. Even though I literally can't do even one of these things, I feel like I should be able to do something. Worse, I know that my wife needs me to get to some of these things. The state of our house is weighing on her too. But, I am unable to do it. Thus, I get angry at myself for letting her down too.
Which brings me back to the fact that today is Father's Day. Instead of relaxing and celebrating with my family, I have yelled at the two people I love the most. I have also pouted because the day has not felt at all like "my day." Lastly, I don't even feel like I can make things much better right now because I can barely think straight. My body is tired, and my internal turmoil is paralyzing even the remote chance that I will get anything done - including the massive number of pieces from my students (which will only make me MORE stressed out tomorrow).
I know this day will pass. I know that tomorrow will be okay. I know that MITY will be fine and that the class is good. I know that my wife and daughter still love me. I know that my physical fitness will be what it will be. But, I can't feel it, and I hate that. Days like this are horribly bleak. Yes, I can (and likely will) get at least one thing done, but I won't even enjoy that. More than anything, I just wish in moments like this that nothing was "my responsibilty." I know that is an impossibility, but I feel overwhelmed by the frustration and sadness that I have once again "lost" a day (and a bit of my sanity) to this rotten disease.
Thursday, May 28, 2009
Sad and Surreal
Somehow, it is still May. Although I have not written for weeks, it feels like it has been a year. While I know that I have managed life, work, home, and health reasonably well, I am frustrated that I have not found time for me. I need to blog. I need to exercise. I need to practice yoga. Thankfully, summer is literally around the corner. My primary personal goal is to set clear patterns for those three things for me.
Even though I have coped with my narcolepsy well, many moments overwhelm me. One happened yesterday. I left home at 7:20 AM, and other than a brief 45 minute stop for dinner, I did not return until 10 PM. In the midst of it, I honestly worried that I would have a sleep attack. Gratefully, everything went well, and I found a second wind.
Today was a radically different situation. Even though I had Monday off, I found myself stunned this morning when I remember that today was Thursday. I honestly felt like Tuesday and Wednesday last for weeks. Yet, today was the longest day yet. Much of the morning went well, but in my afternoon class, I led a discussion during which MANY of my boys attempted to fault a female character in a novel for a rape. I was and am aghast. Although the group has certainly had moments of sheer male stupidity, this horrific scene was completely off my radar.
We are reading Speak by Laurie Halse Anderson. The book is tremendous, and most students can't put it down. The discussion began with some wonderfully insightful comments, but a boy in the class who has often made short-sighted comments then offered that the protagonist was at fault for her rape. Assuming that his peers would immediately reject his comment, I called on two other boys. Both of them agreed with the first. The ensuing discussion entailed young women respectfully and intelligently refuting the lunacy that these boys were spewing, but the boys chose to ignore everything that the young women offered. I know that I handled the situation as well as I could, but I regret that I did not simply reject the initial comments. Unfortunately, I all too often try to be "fair." Since my own biases tend toward feminism, I refrained from shutting down this boy. Hoping that the boys would "learn" from the discussion, I proceeded to allow tremendous pain to be inflicted on the young women in the room.
When class ended the boys strolled out the door without a care in the world. Many of our young women were reeling from the boys' remarks. One broke down immediately. Two others spent 15 minutes in dialogue with my co-teachers and me. Three more wrote lengthy emails upon arriving at home. I highly doubt that the boys even pondered the class period for more than 10 seconds. Thus, in an attempt to "help" the boys, I subjected young women to tremendous pain. That is male privilege in its most sinister forms.
Thus, my co-teachers and I will adjust our schedule for tomorrow. Instead of playing our trivia and knowledge game, we will separate into gender specific groups. Hopefully, the young women can be reaffirmed by the testoterone-free period. The boys, on the other hand, should be interesting. I definitely think that those boys need to hear in no uncertain terms that rape is an evil crime and that a rape is NEVER the fault of the victim. It should be interesting.
Even though I have coped with my narcolepsy well, many moments overwhelm me. One happened yesterday. I left home at 7:20 AM, and other than a brief 45 minute stop for dinner, I did not return until 10 PM. In the midst of it, I honestly worried that I would have a sleep attack. Gratefully, everything went well, and I found a second wind.
Today was a radically different situation. Even though I had Monday off, I found myself stunned this morning when I remember that today was Thursday. I honestly felt like Tuesday and Wednesday last for weeks. Yet, today was the longest day yet. Much of the morning went well, but in my afternoon class, I led a discussion during which MANY of my boys attempted to fault a female character in a novel for a rape. I was and am aghast. Although the group has certainly had moments of sheer male stupidity, this horrific scene was completely off my radar.
We are reading Speak by Laurie Halse Anderson. The book is tremendous, and most students can't put it down. The discussion began with some wonderfully insightful comments, but a boy in the class who has often made short-sighted comments then offered that the protagonist was at fault for her rape. Assuming that his peers would immediately reject his comment, I called on two other boys. Both of them agreed with the first. The ensuing discussion entailed young women respectfully and intelligently refuting the lunacy that these boys were spewing, but the boys chose to ignore everything that the young women offered. I know that I handled the situation as well as I could, but I regret that I did not simply reject the initial comments. Unfortunately, I all too often try to be "fair." Since my own biases tend toward feminism, I refrained from shutting down this boy. Hoping that the boys would "learn" from the discussion, I proceeded to allow tremendous pain to be inflicted on the young women in the room.
When class ended the boys strolled out the door without a care in the world. Many of our young women were reeling from the boys' remarks. One broke down immediately. Two others spent 15 minutes in dialogue with my co-teachers and me. Three more wrote lengthy emails upon arriving at home. I highly doubt that the boys even pondered the class period for more than 10 seconds. Thus, in an attempt to "help" the boys, I subjected young women to tremendous pain. That is male privilege in its most sinister forms.
Thus, my co-teachers and I will adjust our schedule for tomorrow. Instead of playing our trivia and knowledge game, we will separate into gender specific groups. Hopefully, the young women can be reaffirmed by the testoterone-free period. The boys, on the other hand, should be interesting. I definitely think that those boys need to hear in no uncertain terms that rape is an evil crime and that a rape is NEVER the fault of the victim. It should be interesting.
Friday, October 17, 2008
Wild Week(s)
I know I need to stop harping on the rapidity of my daily life, but somehow the first half of October simply disappeared. Amid the Narcolepsy Network conference, crazy days at work, two injuries for my daughter, a week long school trip for my daughter, and construction on my house, I literally turned around and discovered that half of this month simply disappeared. At least I can vaguely piece together the events of the last couple weeks. I also know that I have "done good work" in the first half of this month. Nonetheless, I sincerely hope that the pace of my life slows a bit.
I can't foresee that happening, though. We still have a great deal of construction that needs to happen. My wife is also heading out of town for a conference. That means that I am a solo parent for this next week. What I need to do is breathe and relax. I also need to take each thing one step at a time. Of course, I seem to struggle to even take a half step at a time right now. I have made progress on a few things each day, but I continue to not get enough done. Our house is a mess. My correcting needs to be finished. I also need to get a number of things prepared for our next unit at school. And, I feel exhausted.
One of the worst things is that I have been fairly snappy today at home. Neither my wife, nor my daughter deserve that, but I am having a tough time grounding myself. My wife has a ton to get done before she leaves town. She is tense, and I wanted to stay out of her way today. Unfortunately, I assumed that she was going to head into her office. Instead, she stayed around the house and organized many things. Thus, I waited to do things I had hoped to accomplish. So, now, I have more to try to get done tomorrow. My daughter is simply a wonderful, but loud almost twelve year old. She spent most of the day commenting on many things that frustrate here and declaring her intentions to do this, that and the other thing. It might have been funny if I had not been so anxious. Rather than laugh at her antics, each word out of her mouth clicked my blood pressure up another notch.
These are the moments that drive me insane about narcolepsy. Because I am sleepy and exhausted, I muddle through my own day, AND I get angry at the people that I love the most because I can't handle their moods. I need to get into bed and go to sleep. Tomorrow is another day, and I will make the best of it. Whatever I can get done will be enough. It might not be what I want, but it will have to do.
I can't foresee that happening, though. We still have a great deal of construction that needs to happen. My wife is also heading out of town for a conference. That means that I am a solo parent for this next week. What I need to do is breathe and relax. I also need to take each thing one step at a time. Of course, I seem to struggle to even take a half step at a time right now. I have made progress on a few things each day, but I continue to not get enough done. Our house is a mess. My correcting needs to be finished. I also need to get a number of things prepared for our next unit at school. And, I feel exhausted.
One of the worst things is that I have been fairly snappy today at home. Neither my wife, nor my daughter deserve that, but I am having a tough time grounding myself. My wife has a ton to get done before she leaves town. She is tense, and I wanted to stay out of her way today. Unfortunately, I assumed that she was going to head into her office. Instead, she stayed around the house and organized many things. Thus, I waited to do things I had hoped to accomplish. So, now, I have more to try to get done tomorrow. My daughter is simply a wonderful, but loud almost twelve year old. She spent most of the day commenting on many things that frustrate here and declaring her intentions to do this, that and the other thing. It might have been funny if I had not been so anxious. Rather than laugh at her antics, each word out of her mouth clicked my blood pressure up another notch.
These are the moments that drive me insane about narcolepsy. Because I am sleepy and exhausted, I muddle through my own day, AND I get angry at the people that I love the most because I can't handle their moods. I need to get into bed and go to sleep. Tomorrow is another day, and I will make the best of it. Whatever I can get done will be enough. It might not be what I want, but it will have to do.
Thursday, August 7, 2008
Feverish Frustration
I was supposed to go to the zoo today. I was supposed to enjoy the day with my wife, my daughter and my sister-in-law. Instead, I spent it on the couch, under a blanket, with my temperature slightly elevated. Even more annoying is that I am positive that today's health woe is directly connected to pushing too hard yesterday. I have been doing a good job of balancing things for the past week, but I went too far yesterday.
Since the weekend juggling a house guest, school prep, housework and mental health has been flowing well. We have had a great time going places with my wife's sister. I continue to grow in respect for my teaching team and in excitement for the coming school year. My yoga and exercise have not fit, but I have been breathing and have remained calm. I even have managed to get big and little projects done in the house. Best of all, though, I have done all of this while still taking care of my physical health.
Unfortunately, I started on another big project yesterday. We are hoping to have some major work done on our house and garage. As a result of that, we needed to remove a decent sized tree (10 years old or so) from behind our garage. I thought it would fairly simple, but I was definitely wrong. I took one look at the tree and realized that I needed to get onto the roof to remove branches. While I was up there, my saw died, but I got the branches off.
I was exhausted and wisely went inside to rest and to have lunch. I had already had a four hour meeting that morning, and we were hosting a family cook out that night. I sat for an hour. Then, I made a horrid mistake. I assumed that I could quickly finish the tree. Since I had a second battery pack and only the trunk to cut down, I figured the cutting would go quickly. Invariably, the trunk was thicker than I thought, the wood was young and hard to cut, and the battery died quickly. I also became fixated on finishing. I pushed through because I was worried (irrationally) that I would leave the job unfinished. Fearing that weeks from now my wife and I would be fighting about the tree truck, I got the hatchet from our garage. I also know that my "estimations" can often be WAY off. I truly believed that I could chop the remaining tree down fast.
The actual process tool much longer - on the order of a half hour. I flailed away at the trunk. The blisters that developed on my right hand still hurt today. In fact the one that popped while I worked made me nervous at first. I thought it might be infected, but I was wrong (thankfully). I did get the tree down, but my whole body was shaking. Somehow, I settled down and had a good evening. My wife did most of the work when our guests arrived, but I even did some cooking and cleaning.
What drives me insane, though, is that I didn't sleep well. Then, I woke this morning and knew that I was sick again. I felt lousy, just like I did last week after trying to play ultimate. I understand that I need to be careful with my exercise and exertion, but it drives me nuts that one bad decision can derail me for at least a day. I am worried that it might even be more than one day. It took me three to four days to "recover" from ultimate. I also know I felt WAY worse yesterday than I did last Wednesday. I will cope with whatever tomorrow brings, but my mood will be dismal if I feel this sick or worse. We are supposed to go see the Star Wars exhibit at the Science Museum of Minnesota. I want to do that with my family, AND I REALLY want to see the exhibit. I just can't understand how my body can be this frail. It's crazy, absolutely crazy.
Since the weekend juggling a house guest, school prep, housework and mental health has been flowing well. We have had a great time going places with my wife's sister. I continue to grow in respect for my teaching team and in excitement for the coming school year. My yoga and exercise have not fit, but I have been breathing and have remained calm. I even have managed to get big and little projects done in the house. Best of all, though, I have done all of this while still taking care of my physical health.
Unfortunately, I started on another big project yesterday. We are hoping to have some major work done on our house and garage. As a result of that, we needed to remove a decent sized tree (10 years old or so) from behind our garage. I thought it would fairly simple, but I was definitely wrong. I took one look at the tree and realized that I needed to get onto the roof to remove branches. While I was up there, my saw died, but I got the branches off.
I was exhausted and wisely went inside to rest and to have lunch. I had already had a four hour meeting that morning, and we were hosting a family cook out that night. I sat for an hour. Then, I made a horrid mistake. I assumed that I could quickly finish the tree. Since I had a second battery pack and only the trunk to cut down, I figured the cutting would go quickly. Invariably, the trunk was thicker than I thought, the wood was young and hard to cut, and the battery died quickly. I also became fixated on finishing. I pushed through because I was worried (irrationally) that I would leave the job unfinished. Fearing that weeks from now my wife and I would be fighting about the tree truck, I got the hatchet from our garage. I also know that my "estimations" can often be WAY off. I truly believed that I could chop the remaining tree down fast.
The actual process tool much longer - on the order of a half hour. I flailed away at the trunk. The blisters that developed on my right hand still hurt today. In fact the one that popped while I worked made me nervous at first. I thought it might be infected, but I was wrong (thankfully). I did get the tree down, but my whole body was shaking. Somehow, I settled down and had a good evening. My wife did most of the work when our guests arrived, but I even did some cooking and cleaning.
What drives me insane, though, is that I didn't sleep well. Then, I woke this morning and knew that I was sick again. I felt lousy, just like I did last week after trying to play ultimate. I understand that I need to be careful with my exercise and exertion, but it drives me nuts that one bad decision can derail me for at least a day. I am worried that it might even be more than one day. It took me three to four days to "recover" from ultimate. I also know I felt WAY worse yesterday than I did last Wednesday. I will cope with whatever tomorrow brings, but my mood will be dismal if I feel this sick or worse. We are supposed to go see the Star Wars exhibit at the Science Museum of Minnesota. I want to do that with my family, AND I REALLY want to see the exhibit. I just can't understand how my body can be this frail. It's crazy, absolutely crazy.
Sunday, July 27, 2008
Physically Failing
I wish I knew how to surf. If I did, I could honestly say, "narcolepsy is like riding a big wave - you know you are going to crash eventually, it just depends on how much it will hurt this time." Sadly, I don't surf so I have no idea how accurate that statement is. Still, I feel like the wave won BIG time this weekend. I have gotten some stuff done, but I was supposed to be cheering on my ultimate team and playing a few points. Instead, I awoke yesterday with a summer cold in full bloom. My wife and daughter both had it, but there was about a week lag between theirs clearing up and mine. I made the right choice and stayed home, but I hate missing the tournament.
I also know that part of me "getting" sick was trying to do more than I should when I practiced on Wednesday. I am "out of shape" and run down. Now, I can certainly still play ultimate decently even in this condition, but it comes at a price. The longer I live with knowledge of my narcolepsy, the more I realize how "good" I became at pushing myself well beyond my physical limits. I am sure that parts of my other health woes stem from me using up energy that should have gone to my immune system and digestion. Even now, as I have been generally healthier since starting narcolepsy treatment, I can feel my health slip when I do too much. The four weeks of full time teaching in a five week period was a terrible decision, but so is playing ultimate at full speed (or as full as I can go) when I am still recovering from that teaching.
I definitely need to do some thinking during this next week. Is it wise for me to try to practice two days a week right now? I definitely MUST start an exercise routine since my back and knees are not doing well and my weight keeps creeping up now that I am on blood pressure meds. But, are two to three hour intense practices a good decision? Beyond that, does it make sense to try to go to all day tournaments when I can't honestly function well in my own home for an entire day? The hard part in this is that I LOVE this team I am on. I love spending time with them and I do contribute in tangible ways. I need what my team gives me, but does that outweigh the potential negatives to my physical health? I just don't know.
I think I need to email my captains to see what they think. I also need to discuss it with my wife. She is incredible at helping me gain perspective. I, sadly, am terrible at limits. I need to block out my day so I have set periods for exercise and yoga. Without those, I shouldn't be thinking about doing anything physical (or much else for that matter). My endurance is WAY down. Part of that is the narcolepsy, but part of it too is simply atrophying due to not balancing my schedule and activities. I need to be stronger just so I can teach part-time effectively and still be present at home.
Even as I wrote that, it hurts. I know that the right thing is to see if I can still come to some practices, but plan to not play in tournaments. I am trying not to wallow in the idea that ultimate is one more thing that narcolepsy has cost me. I don't want to "quit," but I do think it is unrealistic of me to expect that I will be in any kind of condition to play well and consistently for extended periods right now. I just don't have that level of fitness. AND, I am not disciplined enough to control myself at a practice or tournament. I WILL play when I shouldn't - I always have. And, as a result, I will make myself ill. I still will have the conversations with people, but I need to be good to me. Hopefully, making a decision like this will also motivate me to create the space for exercise and yoga.
The final rotten thing about this weekend is that I haven't done much at home either. It is one thing to miss the tournament if I am being productive at home. It is another thing to know that much of the crap looming in my mind is still there, AND I am not having fun cheering on my teammates. But, pushing now will mean prolonged health issues. I just need to keep taking one step at a time. I can't finish everything at once - ever! There will always be work and there will always be more to do. I need to rest and get healthy. That way, I can exercise wisely and begin to build strength.
I also know that part of me "getting" sick was trying to do more than I should when I practiced on Wednesday. I am "out of shape" and run down. Now, I can certainly still play ultimate decently even in this condition, but it comes at a price. The longer I live with knowledge of my narcolepsy, the more I realize how "good" I became at pushing myself well beyond my physical limits. I am sure that parts of my other health woes stem from me using up energy that should have gone to my immune system and digestion. Even now, as I have been generally healthier since starting narcolepsy treatment, I can feel my health slip when I do too much. The four weeks of full time teaching in a five week period was a terrible decision, but so is playing ultimate at full speed (or as full as I can go) when I am still recovering from that teaching.
I definitely need to do some thinking during this next week. Is it wise for me to try to practice two days a week right now? I definitely MUST start an exercise routine since my back and knees are not doing well and my weight keeps creeping up now that I am on blood pressure meds. But, are two to three hour intense practices a good decision? Beyond that, does it make sense to try to go to all day tournaments when I can't honestly function well in my own home for an entire day? The hard part in this is that I LOVE this team I am on. I love spending time with them and I do contribute in tangible ways. I need what my team gives me, but does that outweigh the potential negatives to my physical health? I just don't know.
I think I need to email my captains to see what they think. I also need to discuss it with my wife. She is incredible at helping me gain perspective. I, sadly, am terrible at limits. I need to block out my day so I have set periods for exercise and yoga. Without those, I shouldn't be thinking about doing anything physical (or much else for that matter). My endurance is WAY down. Part of that is the narcolepsy, but part of it too is simply atrophying due to not balancing my schedule and activities. I need to be stronger just so I can teach part-time effectively and still be present at home.
Even as I wrote that, it hurts. I know that the right thing is to see if I can still come to some practices, but plan to not play in tournaments. I am trying not to wallow in the idea that ultimate is one more thing that narcolepsy has cost me. I don't want to "quit," but I do think it is unrealistic of me to expect that I will be in any kind of condition to play well and consistently for extended periods right now. I just don't have that level of fitness. AND, I am not disciplined enough to control myself at a practice or tournament. I WILL play when I shouldn't - I always have. And, as a result, I will make myself ill. I still will have the conversations with people, but I need to be good to me. Hopefully, making a decision like this will also motivate me to create the space for exercise and yoga.
The final rotten thing about this weekend is that I haven't done much at home either. It is one thing to miss the tournament if I am being productive at home. It is another thing to know that much of the crap looming in my mind is still there, AND I am not having fun cheering on my teammates. But, pushing now will mean prolonged health issues. I just need to keep taking one step at a time. I can't finish everything at once - ever! There will always be work and there will always be more to do. I need to rest and get healthy. That way, I can exercise wisely and begin to build strength.
Sunday, July 13, 2008
Hemispheric Wholeness (Holistically)
My Saturday was a nightmare, with the exception of two things. First, a dear friend sent me an amazing video clip to watch, which helped to save the weekend. Second, I spent Saturday evening (and most of Sunday) with my amazing wife, celebrating her birthday (and our anniversary) and reveling in her beauty and joy. What amazes me most, though, is that I easily could have thrown all of the good parts of Saturday right out of the window. I came home tired and frustrated; then, I rallied!
The day began when I awoke feeling worse than I had on Friday night - never a good sign. My bowels were screaming (a lovely treat that continued throughout the day). I also had no energy - even getting up to feed the cats wiped me out. Immediately, I started in on myself mentally. I had told my ultimate captains that I would definitely be at Saturday's practice. I had even blown off a friend's move to make sure that I could go. But, I also knew that, the way I was feeling, two hours (or more) of practice would destroy me. My wife and I had plans for the evening to celebrate our 17th anniversary and her 40th birthday. I wrestled with the guilt and the practicality and the irrationality and the frustration that plague me constantly, particularly when I am completely run down.
Gratefully, my wife saw this and asked me if I was beating myself up over ultimate. We had a good conversation, and I made the wise decision to skip practice. Everything else aside, playing ultimate would have been a terrible decision just for my physical health. Not only are my knees bothering me a great deal again, but the aforementioned bowel issues would have made me grossly uncomfortable at the fields. I even managed to pass more than gas in a few of my "better" moments in the morning.
Having made that first wise, but rotten, decision, I then tried to do something. I picked up a few things, started some laundry, and even got most of our door handles fixed. I also made myself late for the one other event I had scheduled. The MOONS group was planning on meeting on Saturday. The gathering was taking place in Maple Grove, MN at a coffee shop. I arrived 20 minutes late, but could find no one there that I remembered from the large meeting I had attended at the end of May. In variably I was angry at myself for being late. I also worried that I might be at the wrong coffee shop. As much as I wanted to be mad at others in the event that the meeting had been canceled or that not many people showed up so the first arrivals went home, most of my ire was reserved for me alone. I did attempt to log into my computer to see if I had missed a message if I got the info wrong, but I would have had to pay for access. I was able to discover that a second branch of the coffee shop was elsewhere in Maple Grove. I had no idea if it was on the correct street, though.
Thus, around 1:30 (ten+ minutes after my arrival), I set off down the street on which I knew the coffee shop was supposed to be. As far as I could tell there were no other branches on the street. At that point, I figured that I should cut my losses. I planned to stop at a few stores and then head home so I could enjoy my time with my wife. My disappointment and guilt had not abated, but I was proud of myself for still being productive, even as I beat myself up. Before stopping, though, I had to get gas. My warning light had been on since I had left home, and I had driven quite a ways.
Thinking I was getting away from the shopping areas, I made a turn at a light. Unfortunately, that turn took me into one of the primary shopping areas in Maple Grove. The entire region I was in was a store mecca, but this particular grouping seemed to be the major host of "Sidewalk Sale Days." No matter were I went, I could not get out of the lot. After forty minutes, I eventually got out. My car had been running the entire time, and I had regularly thought I had found a route out only to realize it was another dead end. I am quite sure that the only thing that kept me from ramming something with my car was a constant stream of self-talk. Much of it was me trying to calm myself, but it was also reprimands reminding me of the damage that I would do. Needless to say, I was immensely relief to escape that literal, personal hell.
I then called my wife so she could know things were not going well. I was already calming myself, heading back to the stores I wanted to visit, because I had seen gas pumps there as I was leaving (but figured it would be harder to get to those than find others - ha!). I was just finishing the call when I pulled into the pumps...only to realize that CostCo only lets their members use them. On the verge of tears, I told my wife that I would call my sister (who lives in Maple Grove) if I ran out of gas. I honestly thought I might, as much as I am prone to hyperbole. Thankfully, I found gas right away. I even had a gallon to spare - gotta love Hondas! I then did the shopping that I wanted and headed home. Even at home, knowing that I needed to get ready, I tried to do one last door knob. Not only did it not work, but I also managed to cut open a finger.
So, I feel horrid, have had an awful day and completely blame myself for all of it. I am supposed to go to dinner and then a hotel with my wife to celebrate her birthday and our anniversary. Part of me knew the entire situation was doomed. But, I rallied. I was still out of sorts in the car, but did my best to be pleasant with my wife. By the time we got to the restaurant my mood was decent. And, as our food arrived, I was genuinely enjoying myself. We had a phenomenal meal, bought some cool furniture for our home and had an amazing stay at the hotel. I was proud of myself, but I also recognized that I found a valuable lesson in my Saturday.
A kind friend shared a video with me on Saturday. I actually watched it before heading out on my disastrous trip to Maple Grove. The video can be found at TED Ideas Worth Spreading. TED stands for Technology, Entertainment, Design. In 1984 a conference was started to bring people from these areas together. Now, it is much more with science, education, the arts and business also being represented. Basically, the conference is help each year (along with many other activities) to allow great thinkers from all of these fields to share an eighteen minute story. Many of the talks are now available online.
The video my friend shared is Dr. Jill Bolte Taylor, a brain scientist, telling the story of her own stroke. The direct link to it is http://www.ted.com/index.php/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html. The story itself is breath-taking (and funny and sad and wonderful), but her insight from the experience stunned me. She nearly died, but what she found so remarkable is that the stroke afforded her the opportunity to realize that she could "live" in either her right brain (where everything is beautiful and we are all connected internally and externally) or in her left brain (where everything is ordered and tasked and categorized). She chooses the right side. Now, Dr. Taylor is not saying that the left side is bad, but she raises the issue that the left side is the one that most of us choose.
Having heard that message on Saturday, I then went out and lived completely in the left side of my brain. There were things to do, tasks to complete. I wasn't getting them done and that was bad. My left side pushed harder and I continued to fail. My left side knew I wouldn't and couldn't measure up so it drove into me as harder as it could. I nearly broke. Coming home, though, and knowing that my wife is why I had wanted things to go the way I had planned them (in my left brain), helped me to let go of it. I am not fully sure how I did it, but I handed power over to my right brain. I opened myself to everything around me that is beautiful. I let myself, even after the morning and afternoon insanity, appreciate everything that was good. I am glad I didn't have to have a stroke to see that.
The other important realization that came out of Saturday's near nightmare is that my wife is the most important person in my life. As she pointed out to me as we awoke in each other's arms on Sunday - "We are soul mates." While the two of us have radically different personalities, we come together beautifully. I don't want to overwhelm her with the stress of my condition, but I also can't hold myself back from her. NOTHING makes my world brighter and more complete than spending time with my wife. She ignites joy inside me everything we connect. I am grateful that I didn't blow our evening on Saturday - partly because it would have ruined her birthday, but also because I learned again how vital she is to my well-being.
I am not foolish enough to think that I will not be in my left brain often. That is part of who I am. But, I will be making a much more concerted effort to allow my right brain plenty of time to revel in the connections that I have to everyone and everything around me. I also know that my wife can't be the sole source of my support, but I do need to let her fill the primary role far more often than I have been letting her. I need to open myself, in general, to all of those people around me who do want to love me and help me. The finally irony of the video and the way things turned out this weekend is that I have been teaching my Ender and Bean course for a week. One of the major themes in the Ender books is the philotic connection that exists between people (and atoms and cells and everything). As I watched Dr. Taylor speak about the right brain, I thought - "that's the philotic connection!" Then, on Sunday morning when I realized that my right brain had taken over and saved the night, I knew that much of the love and joy I experience when I am present with my wife is also the philotic connection. Suddenly, my Orson Scott Card class didn't feel as much like SciFi any more. I may still wind up showing the class the Dr. Taylor video, but none the less, I now feel like I have a much better insight into my own class due to this weekend.
The day began when I awoke feeling worse than I had on Friday night - never a good sign. My bowels were screaming (a lovely treat that continued throughout the day). I also had no energy - even getting up to feed the cats wiped me out. Immediately, I started in on myself mentally. I had told my ultimate captains that I would definitely be at Saturday's practice. I had even blown off a friend's move to make sure that I could go. But, I also knew that, the way I was feeling, two hours (or more) of practice would destroy me. My wife and I had plans for the evening to celebrate our 17th anniversary and her 40th birthday. I wrestled with the guilt and the practicality and the irrationality and the frustration that plague me constantly, particularly when I am completely run down.
Gratefully, my wife saw this and asked me if I was beating myself up over ultimate. We had a good conversation, and I made the wise decision to skip practice. Everything else aside, playing ultimate would have been a terrible decision just for my physical health. Not only are my knees bothering me a great deal again, but the aforementioned bowel issues would have made me grossly uncomfortable at the fields. I even managed to pass more than gas in a few of my "better" moments in the morning.
Having made that first wise, but rotten, decision, I then tried to do something. I picked up a few things, started some laundry, and even got most of our door handles fixed. I also made myself late for the one other event I had scheduled. The MOONS group was planning on meeting on Saturday. The gathering was taking place in Maple Grove, MN at a coffee shop. I arrived 20 minutes late, but could find no one there that I remembered from the large meeting I had attended at the end of May. In variably I was angry at myself for being late. I also worried that I might be at the wrong coffee shop. As much as I wanted to be mad at others in the event that the meeting had been canceled or that not many people showed up so the first arrivals went home, most of my ire was reserved for me alone. I did attempt to log into my computer to see if I had missed a message if I got the info wrong, but I would have had to pay for access. I was able to discover that a second branch of the coffee shop was elsewhere in Maple Grove. I had no idea if it was on the correct street, though.
Thus, around 1:30 (ten+ minutes after my arrival), I set off down the street on which I knew the coffee shop was supposed to be. As far as I could tell there were no other branches on the street. At that point, I figured that I should cut my losses. I planned to stop at a few stores and then head home so I could enjoy my time with my wife. My disappointment and guilt had not abated, but I was proud of myself for still being productive, even as I beat myself up. Before stopping, though, I had to get gas. My warning light had been on since I had left home, and I had driven quite a ways.
Thinking I was getting away from the shopping areas, I made a turn at a light. Unfortunately, that turn took me into one of the primary shopping areas in Maple Grove. The entire region I was in was a store mecca, but this particular grouping seemed to be the major host of "Sidewalk Sale Days." No matter were I went, I could not get out of the lot. After forty minutes, I eventually got out. My car had been running the entire time, and I had regularly thought I had found a route out only to realize it was another dead end. I am quite sure that the only thing that kept me from ramming something with my car was a constant stream of self-talk. Much of it was me trying to calm myself, but it was also reprimands reminding me of the damage that I would do. Needless to say, I was immensely relief to escape that literal, personal hell.
I then called my wife so she could know things were not going well. I was already calming myself, heading back to the stores I wanted to visit, because I had seen gas pumps there as I was leaving (but figured it would be harder to get to those than find others - ha!). I was just finishing the call when I pulled into the pumps...only to realize that CostCo only lets their members use them. On the verge of tears, I told my wife that I would call my sister (who lives in Maple Grove) if I ran out of gas. I honestly thought I might, as much as I am prone to hyperbole. Thankfully, I found gas right away. I even had a gallon to spare - gotta love Hondas! I then did the shopping that I wanted and headed home. Even at home, knowing that I needed to get ready, I tried to do one last door knob. Not only did it not work, but I also managed to cut open a finger.
So, I feel horrid, have had an awful day and completely blame myself for all of it. I am supposed to go to dinner and then a hotel with my wife to celebrate her birthday and our anniversary. Part of me knew the entire situation was doomed. But, I rallied. I was still out of sorts in the car, but did my best to be pleasant with my wife. By the time we got to the restaurant my mood was decent. And, as our food arrived, I was genuinely enjoying myself. We had a phenomenal meal, bought some cool furniture for our home and had an amazing stay at the hotel. I was proud of myself, but I also recognized that I found a valuable lesson in my Saturday.
A kind friend shared a video with me on Saturday. I actually watched it before heading out on my disastrous trip to Maple Grove. The video can be found at TED Ideas Worth Spreading. TED stands for Technology, Entertainment, Design. In 1984 a conference was started to bring people from these areas together. Now, it is much more with science, education, the arts and business also being represented. Basically, the conference is help each year (along with many other activities) to allow great thinkers from all of these fields to share an eighteen minute story. Many of the talks are now available online.
The video my friend shared is Dr. Jill Bolte Taylor, a brain scientist, telling the story of her own stroke. The direct link to it is http://www.ted.com/index.php/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html. The story itself is breath-taking (and funny and sad and wonderful), but her insight from the experience stunned me. She nearly died, but what she found so remarkable is that the stroke afforded her the opportunity to realize that she could "live" in either her right brain (where everything is beautiful and we are all connected internally and externally) or in her left brain (where everything is ordered and tasked and categorized). She chooses the right side. Now, Dr. Taylor is not saying that the left side is bad, but she raises the issue that the left side is the one that most of us choose.
Having heard that message on Saturday, I then went out and lived completely in the left side of my brain. There were things to do, tasks to complete. I wasn't getting them done and that was bad. My left side pushed harder and I continued to fail. My left side knew I wouldn't and couldn't measure up so it drove into me as harder as it could. I nearly broke. Coming home, though, and knowing that my wife is why I had wanted things to go the way I had planned them (in my left brain), helped me to let go of it. I am not fully sure how I did it, but I handed power over to my right brain. I opened myself to everything around me that is beautiful. I let myself, even after the morning and afternoon insanity, appreciate everything that was good. I am glad I didn't have to have a stroke to see that.
The other important realization that came out of Saturday's near nightmare is that my wife is the most important person in my life. As she pointed out to me as we awoke in each other's arms on Sunday - "We are soul mates." While the two of us have radically different personalities, we come together beautifully. I don't want to overwhelm her with the stress of my condition, but I also can't hold myself back from her. NOTHING makes my world brighter and more complete than spending time with my wife. She ignites joy inside me everything we connect. I am grateful that I didn't blow our evening on Saturday - partly because it would have ruined her birthday, but also because I learned again how vital she is to my well-being.
I am not foolish enough to think that I will not be in my left brain often. That is part of who I am. But, I will be making a much more concerted effort to allow my right brain plenty of time to revel in the connections that I have to everyone and everything around me. I also know that my wife can't be the sole source of my support, but I do need to let her fill the primary role far more often than I have been letting her. I need to open myself, in general, to all of those people around me who do want to love me and help me. The finally irony of the video and the way things turned out this weekend is that I have been teaching my Ender and Bean course for a week. One of the major themes in the Ender books is the philotic connection that exists between people (and atoms and cells and everything). As I watched Dr. Taylor speak about the right brain, I thought - "that's the philotic connection!" Then, on Sunday morning when I realized that my right brain had taken over and saved the night, I knew that much of the love and joy I experience when I am present with my wife is also the philotic connection. Suddenly, my Orson Scott Card class didn't feel as much like SciFi any more. I may still wind up showing the class the Dr. Taylor video, but none the less, I now feel like I have a much better insight into my own class due to this weekend.
Thursday, July 10, 2008
Annoyance of Adulthood
Generally, I love being a "grown up." My wife and I have a good income, and we own our home. My age allows me to have a level of authority. Store clerks rarely look askance at my presence in their stores, unlike my younger days when they thought I might be a troublemaker or shoplifter. Certainly, I enjoy the privilege of enfranchisement, and although I don't drink, I like that I can purchase a bottle of wine for my wife or a friend. I even like that being an adult makes me less concerned about the anti-depressants that I take. The bad thing, though, is the feelings of responsibility that seem to accompany this stage of life.
Both my narcolepsy and my age continue to cause me to recognize more limits in my life. The latest came yesterday. I am in the midst of teaching my second class at MITY - The Enemy Gate is Down: The Stories of Ender, Bean & You. The class focuses on the Ender and Bean series of books from Orson Scott Card. I adore the books and LOVE teaching the class. The problem is that I simply don't have the energy to go all day any more. Even more frustrating is that I also need to start planning for my course at my school. Thus, my team has had two meetings already this week. We have a third tonight. I am thrilled and excited to work with them. I know it will be fantastic. I even find these summer meetings incredible. But, between MITY and the evening meetings, I went from 7:30 AM to 9+ PM the first two nights this week. THEN, I worked more on my MITY course. That will be my schedule again tonight.
I know now that teaching this Session B course was a mistake. Again, I love doing it, but I physically can't. Making the decision to only do Session A next year is the "right" one, but I hate it. I get so much out of working in this program, but it is irresponsible of me to do it because as much as I enjoy the work, I know the course could be better and that I am dropping the ball on everything at home and that I have no energy for anything but the course and that I will need a week or two (maybe more to recover). While some of those issues impact others (mostly my wife and daughter), I am more concerned about how much they impact me. Yes, I do wish that I could still function well enough to appreciate the joy of MITY, but I don't. The negative emotions are definitely outweighing the positive.
The bigger (and more immediate) "grown up" negative, though, has been my lack of ultimate. The sport has always been a vital part of my "balance," especially in the summer. Unfortunately, both my Session A and Session B courses and the narcolepsy have prevented me from making any practices for a month. I had hoped the slower pace of my second class would let me get to practice this week, but I realized Wednesday morning that if I did go to practice that night, it would mean FOUR days in a row (counting today) that I would be in high gear from 7:30 AM to 9+ PM. That is not just foolish - it is bordering on dangerous. I dragged my body out of bed this morning even without the physical exercise. My knees have also regressed in the last month because I have been putting literally 95% of my energy into my MITY courses. What little is left, I have tried to give to my wife and daughter. I honestly have no time or strength to do the PT exercises that I learned. Thus, practicing for ultimate becomes dangerous at another level.
All of this lead me to the highly responsible decision to not go to Wednesday practice, and I already told the captains that I would miss next Wednesday too. But, it makes me so sad. I NEED to have ultimate and my team in my life. They are a vital component of my sanity, but my "adultness" knows that at least this year, my commitments must take precedence. I agreed to teach this second class, thus I MUST be here every day. And, I MUST be prepared for it. Also, I MUST meet with my team for the next school year. That is not an option. We all have crazy summers, and the times this week were in the handful of dates that we could meet. There is NO WAY that I am willing to sacrifice that needed time.
So, some of my frustration is a result of things out of my control. Another piece is the result of my own inability to prioritize myself over the needs of others - that is neither good nor bad, it just is. I just wish it didn't hurt so much having to chose between so many things that I care about. One of the worst elements of narcolepsy is that I not only fear that I will have to give up other important things to me, but also that I already have had to give up vital pieces of myself and am well aware that my fear is actually my reality. I have to accept that. In fact, as I wrestled with missing more practice yesterday, the thought again crept into my head that I might have to give up ultimate, at least from a competitive club perspective. Honestly, how can I justify 1 or 2 three hour practices each week and three to five full weekends of time commitment throughout the summer and fall when I can barely do my part-time job and be present for my wife and daughter? I truly don't know. Am I being selfish? Or foolish? Or smart? Is what I get from playing with my team enough to counteract what it costs me in energy and emotional stability when I feel guilty for not doing more for my family?
Being an adult is a good thing, but it comes with a heavy price. So often as a child, I could afford to have my self-interests guide everything I did. I can't do that now. I am married and have a daughter and love my job and have a chronic illness. All of that means that I must prioritize and choose and eliminate. What is important to me? What do I need? Some days, those questions are easy, but often they are extremely hard. And, this awful condition means that I get to keep trying to cutting away at who and what I am. That is the reality. As much as my meds "help," they do not and cannot "cure" this. They make me functional in a limited way. I can still summon tremendous energy in limited windows of time. I can still be an excellent teacher because I feed off others as an extrovert, but pushing well beyond my boundaries costs me. Thus, the burden rests with me to decide what I should and should not do. It can't be any other way, but I also do not have to like it. And, I don't.
Both my narcolepsy and my age continue to cause me to recognize more limits in my life. The latest came yesterday. I am in the midst of teaching my second class at MITY - The Enemy Gate is Down: The Stories of Ender, Bean & You. The class focuses on the Ender and Bean series of books from Orson Scott Card. I adore the books and LOVE teaching the class. The problem is that I simply don't have the energy to go all day any more. Even more frustrating is that I also need to start planning for my course at my school. Thus, my team has had two meetings already this week. We have a third tonight. I am thrilled and excited to work with them. I know it will be fantastic. I even find these summer meetings incredible. But, between MITY and the evening meetings, I went from 7:30 AM to 9+ PM the first two nights this week. THEN, I worked more on my MITY course. That will be my schedule again tonight.
I know now that teaching this Session B course was a mistake. Again, I love doing it, but I physically can't. Making the decision to only do Session A next year is the "right" one, but I hate it. I get so much out of working in this program, but it is irresponsible of me to do it because as much as I enjoy the work, I know the course could be better and that I am dropping the ball on everything at home and that I have no energy for anything but the course and that I will need a week or two (maybe more to recover). While some of those issues impact others (mostly my wife and daughter), I am more concerned about how much they impact me. Yes, I do wish that I could still function well enough to appreciate the joy of MITY, but I don't. The negative emotions are definitely outweighing the positive.
The bigger (and more immediate) "grown up" negative, though, has been my lack of ultimate. The sport has always been a vital part of my "balance," especially in the summer. Unfortunately, both my Session A and Session B courses and the narcolepsy have prevented me from making any practices for a month. I had hoped the slower pace of my second class would let me get to practice this week, but I realized Wednesday morning that if I did go to practice that night, it would mean FOUR days in a row (counting today) that I would be in high gear from 7:30 AM to 9+ PM. That is not just foolish - it is bordering on dangerous. I dragged my body out of bed this morning even without the physical exercise. My knees have also regressed in the last month because I have been putting literally 95% of my energy into my MITY courses. What little is left, I have tried to give to my wife and daughter. I honestly have no time or strength to do the PT exercises that I learned. Thus, practicing for ultimate becomes dangerous at another level.
All of this lead me to the highly responsible decision to not go to Wednesday practice, and I already told the captains that I would miss next Wednesday too. But, it makes me so sad. I NEED to have ultimate and my team in my life. They are a vital component of my sanity, but my "adultness" knows that at least this year, my commitments must take precedence. I agreed to teach this second class, thus I MUST be here every day. And, I MUST be prepared for it. Also, I MUST meet with my team for the next school year. That is not an option. We all have crazy summers, and the times this week were in the handful of dates that we could meet. There is NO WAY that I am willing to sacrifice that needed time.
So, some of my frustration is a result of things out of my control. Another piece is the result of my own inability to prioritize myself over the needs of others - that is neither good nor bad, it just is. I just wish it didn't hurt so much having to chose between so many things that I care about. One of the worst elements of narcolepsy is that I not only fear that I will have to give up other important things to me, but also that I already have had to give up vital pieces of myself and am well aware that my fear is actually my reality. I have to accept that. In fact, as I wrestled with missing more practice yesterday, the thought again crept into my head that I might have to give up ultimate, at least from a competitive club perspective. Honestly, how can I justify 1 or 2 three hour practices each week and three to five full weekends of time commitment throughout the summer and fall when I can barely do my part-time job and be present for my wife and daughter? I truly don't know. Am I being selfish? Or foolish? Or smart? Is what I get from playing with my team enough to counteract what it costs me in energy and emotional stability when I feel guilty for not doing more for my family?
Being an adult is a good thing, but it comes with a heavy price. So often as a child, I could afford to have my self-interests guide everything I did. I can't do that now. I am married and have a daughter and love my job and have a chronic illness. All of that means that I must prioritize and choose and eliminate. What is important to me? What do I need? Some days, those questions are easy, but often they are extremely hard. And, this awful condition means that I get to keep trying to cutting away at who and what I am. That is the reality. As much as my meds "help," they do not and cannot "cure" this. They make me functional in a limited way. I can still summon tremendous energy in limited windows of time. I can still be an excellent teacher because I feed off others as an extrovert, but pushing well beyond my boundaries costs me. Thus, the burden rests with me to decide what I should and should not do. It can't be any other way, but I also do not have to like it. And, I don't.
Friday, June 13, 2008
Irritating Incompetence
I generally consider myself a patient man. In fact, I often forgive far too easily - which eventually results in a crazy "fist punching wall" moment. Certainly, though, having narcolepsy manages to challenge my kindness in a variety of ways. My least favorite, though, is the angst and irrationality the bubbles to the surface when I am forced to deal with screw ups by my pulmonary doctor's office.
If it seems odd that the primary person and clinic responsible for treating my narcolepsy is also one of my greatest sources of frustration, then you are beginning to glimpse why such moments make me crazy. My provider's practice has a convoluted system for relaying information. When I need to get my doctor a message, I can't call his office. There is no published direct number. Instead, I call a central nurse triage line. Now, I do understand why they adhere to this policy. If I were a pulmonary doctor, I would not want every person in the world calling my office attempting to get a prescription for the various stimulants that narcoleptics take. I would even happily call the triage line if my messages were conveyed correctly even 75% of the time. But, when even simple messages get garbled, impacting my daily health, I get irate.
Interestingly enough, this past week's problem was not caused by the triage line. Of course, in my mind, that makes the screw up even worse. As a result of triage line errors, I have been forced to live without any stimulant for three weeks, had to wait days to figure out how to handle possible reactions to medications and not gotten correct prescriptions. Still, if you have ever played "telephone" (the whispering game), you can see how my phone message, written down by someone, called to someone else, and eventually conveyed to my physician might get messed up. I still struggle to see how that could happen virtually EVERY time, but I can at least glimpse it.
When the error happens in a monthly mailed prescription, however, my tolerance diminishes greatly. Even more unbelievable, though, is the fact that the two prescriptions were correct the month before. There should have been NO reason for the screw up that happened this month. I get prescriptions for my two stimulants every month. This month, the prescription for my MUCH more important drug only gave me enough for 10 days. Now, I would assume that ANY organization that had goofed up a customer's items even once or twice would go out of the way to avoid issues in the future. Given that my problems are well past four instances, and the fact that we are talking about drugs that I need to function even at a minimal level, I can't understand how anyone would let the prescriptions leave that office without triple checking them. Yet, when I got the pills, something was seriously wrong.
While their incompetence is unfathomable, I am even more upset about the near paralysis caused by my own surge of emotions. Due to my previous issues with my own doctor's office, the exhausting effects of narcolepsy, and the bizarre reality that people with conditions like mine usually have to treat navigating healthcare like a full-time job, I found this minor issue shutting me down. I was ready to explode - at someone, on someone, near someone. The rage inside me swarmed and nearly burst. Fortunately, I managed to calm myself. I even left a terse, but controlled message on the nurse triage line. The situation has subsequently resolved itself, but I hate that my mood was devastated. Even more unnerving, it was actions by the people supposedly in charge of helping me the most that set off the cascade.
I don't know if I have many options other than this particular pulmonary practice. Beyond what my health plan will cover, I actually worry that I might not find another doctor as good as mine has been. Even though my interactions with staff at many levels has been less than disappointing, the pulmonary doctor that actually treats me has been decent. When I discussed the situation with my primary doctor (and the smartest physician that I see), he pointed out that I am the ONLY narcoleptic he has encountered in 18 years of practicing. It is possible that my pulmonary doctor has only treated a few dozen narcoleptics (or less), even though it is his "job" medically speaking. I am going to try to see someone who specializes in narcolepsy, even if it is just one visit, to make sure that I am being treated in the best way possible. As for the headaches and red tape getting messages to my doctor or help in handling my situation, I will work to stay balanced. I also know that I am nearing the point of no return. One or two more mistakes will force me to sever my relationship with this pulmonary clinic, no matter how much I like (or at least can tolerate) this doctor. As patients we all must advocate for ourselves. We are still consumers and agitating is often the only way we can force change.
I desperately want to avoid another day like this past Wednesday - when all of this took place. Getting that upset completely derails me, especially when the stress comes from agencies theoretically designed to assist me. I don't want to become bitter and jaded, but more and more I can clearly understand how folks with conditions like mine lose all sense of trust in Western medicine. The way medicine is practiced in the United States does not fit well with chronic illness, particularly when that illness is not clearly understood.
If it seems odd that the primary person and clinic responsible for treating my narcolepsy is also one of my greatest sources of frustration, then you are beginning to glimpse why such moments make me crazy. My provider's practice has a convoluted system for relaying information. When I need to get my doctor a message, I can't call his office. There is no published direct number. Instead, I call a central nurse triage line. Now, I do understand why they adhere to this policy. If I were a pulmonary doctor, I would not want every person in the world calling my office attempting to get a prescription for the various stimulants that narcoleptics take. I would even happily call the triage line if my messages were conveyed correctly even 75% of the time. But, when even simple messages get garbled, impacting my daily health, I get irate.
Interestingly enough, this past week's problem was not caused by the triage line. Of course, in my mind, that makes the screw up even worse. As a result of triage line errors, I have been forced to live without any stimulant for three weeks, had to wait days to figure out how to handle possible reactions to medications and not gotten correct prescriptions. Still, if you have ever played "telephone" (the whispering game), you can see how my phone message, written down by someone, called to someone else, and eventually conveyed to my physician might get messed up. I still struggle to see how that could happen virtually EVERY time, but I can at least glimpse it.
When the error happens in a monthly mailed prescription, however, my tolerance diminishes greatly. Even more unbelievable, though, is the fact that the two prescriptions were correct the month before. There should have been NO reason for the screw up that happened this month. I get prescriptions for my two stimulants every month. This month, the prescription for my MUCH more important drug only gave me enough for 10 days. Now, I would assume that ANY organization that had goofed up a customer's items even once or twice would go out of the way to avoid issues in the future. Given that my problems are well past four instances, and the fact that we are talking about drugs that I need to function even at a minimal level, I can't understand how anyone would let the prescriptions leave that office without triple checking them. Yet, when I got the pills, something was seriously wrong.
While their incompetence is unfathomable, I am even more upset about the near paralysis caused by my own surge of emotions. Due to my previous issues with my own doctor's office, the exhausting effects of narcolepsy, and the bizarre reality that people with conditions like mine usually have to treat navigating healthcare like a full-time job, I found this minor issue shutting me down. I was ready to explode - at someone, on someone, near someone. The rage inside me swarmed and nearly burst. Fortunately, I managed to calm myself. I even left a terse, but controlled message on the nurse triage line. The situation has subsequently resolved itself, but I hate that my mood was devastated. Even more unnerving, it was actions by the people supposedly in charge of helping me the most that set off the cascade.
I don't know if I have many options other than this particular pulmonary practice. Beyond what my health plan will cover, I actually worry that I might not find another doctor as good as mine has been. Even though my interactions with staff at many levels has been less than disappointing, the pulmonary doctor that actually treats me has been decent. When I discussed the situation with my primary doctor (and the smartest physician that I see), he pointed out that I am the ONLY narcoleptic he has encountered in 18 years of practicing. It is possible that my pulmonary doctor has only treated a few dozen narcoleptics (or less), even though it is his "job" medically speaking. I am going to try to see someone who specializes in narcolepsy, even if it is just one visit, to make sure that I am being treated in the best way possible. As for the headaches and red tape getting messages to my doctor or help in handling my situation, I will work to stay balanced. I also know that I am nearing the point of no return. One or two more mistakes will force me to sever my relationship with this pulmonary clinic, no matter how much I like (or at least can tolerate) this doctor. As patients we all must advocate for ourselves. We are still consumers and agitating is often the only way we can force change.
I desperately want to avoid another day like this past Wednesday - when all of this took place. Getting that upset completely derails me, especially when the stress comes from agencies theoretically designed to assist me. I don't want to become bitter and jaded, but more and more I can clearly understand how folks with conditions like mine lose all sense of trust in Western medicine. The way medicine is practiced in the United States does not fit well with chronic illness, particularly when that illness is not clearly understood.
Monday, June 9, 2008
Wish This Wasn't so Hard
Today I read a friend's post on a support group message board. She is likely having an allergic reaction to Xyrem, one of the best drugs available for narcolepsy. This great woman has already faced a number of struggles, and now she is forced to confront this heartbreaking issue. Sadly, she has already tried stopping the Xyrem once before after having a reaction, so it is likely that the Xyrem IS the cause. Unfortunately, many narcoleptics share similar stories. Rarely do two of us find that medications work in the exact same way. Often, what works incredible well for some folks is absolutely horrific for others.
I happen to be someone who had an awful reaction to the other standard narcolepsy treatment. The American Academy of Sleep Medicine determined in December 2007 that Xyrem and Provigil (modafinil) are the best way to treat narcolepsy. The Xyrem allows the narcoleptic to have a more restful sleep, while the Provigil helps to keep the patient more alert during the daytime. For many patients the combination works extremely well. Unfortunately, my friend is having trouble with the Xyrem, and I nearly lost my mind (and my body) taking Provigil. It made me incredibly anxious, particularly in the morning. I know that it worked better than either of my stimulants at keeping me alert, but I am convinced it simply worked too well. I am convinced that the half hour I spent each morning curled in the fetal position was the result of the current dose interacting with the previous days dose (all while coming out of my night time Xyrem dose). I also lost weight hand over fist. I am not sure what the total weight loss was, but I know that I lost 20 pounds in a six weeks period. For the final three weeks, I ate multiple times during the day, cramming in food until it hurt. I still dropped 10 pounds in the course of those three weeks. When I finally got in to see my doctor, he insisted that I stop the Provigil. The anxiety cleared within 36 hours, and my appetite returned.
Since then, I struggled to function on a sizable dose of methylphenidate (Ritalin) and now get by on 50 mg of amphetamine each day. Friends who know how much amphetamine that I take are stunned when I tell them that it simply lets me get out of bed. It does not give me a tremendous boost of energy. Instead, I simply feel like I can actually survive my day. In fact I fell back asleep and faded in and out during this past Sunday morning after taking the amphetamine. That is insane, but that is narcolepsy.
I know this frustration is on my mind today because of my friend, but learning of another narcoleptic's struggle regularly triggers these emotions for me. I would guess that others with the condition experience something similar. How can I not read about someone else's hardship with this bizarre condition and immediately have my own wounds reopen. Beyond the medication roulette that so many of us play, our physicians often are more troublesome than anyone could imagine. This disease is not well understood. As a result, only a handful of doctors (even those in the specialties that treat it - pulmonary and neurology) learn much about it. My first pulmonary doctor did have the insight to order the polysomnogram (an overnight sleep study) and the MSLT - Multiple Sleep Latency Test (basically, a series of naps). What he did NOT do is tell me to stop taking my antidepressant. I have no idea if my narcolepsy would have been identified three years earlier, but I certainly am suspicious.
In that same vein, many other narcoleptics have had doctors suddenly re-evaluate their conditions. They go to new physicians who question the old diagnosis. Some even have doctors who refuse to believe the obvious symptoms that the patients exhibit and will not order the proper sleep tests. As a result most narcoleptics feel like they are banging their heads against brick walls - ones with big, sharp spikes popping out at random intervals. Certainly, the only choice is to cope, but that can be so hard when fatigue is your constant companion. I am lucky. My narcolepsy, while a huge burden, is not accompanied with cataplexy (at least not yet). If I do develop cataplexy I will likely be unable to drive. Thankfully, I can still do my job, although only part-time. I can also help my wife and play with my daughter. But even today I am angry about what I did not do. I finished my grades and cleaned my classroom. I dropped off items for my summer course and did some shopping. I will even manage to do some cleaning, but it is NOT enough. My wife also had a rough day. She is now out playing ultimate Frisbee, which she needs to do. If I don't get the kitchen cleaned, I will be letting her down, but worse I will be creating more work for one of us down the road.
Narcolepsy is an evil and silent menace. Daily, I feel like I wade into combat with it. Today was hard because it seems to have the upper hand on a friend. Maybe that helped it have the upper hand on me too. I know I have been off today. Some of it is the lack of "teaching" in my day. Of course, I will likely write next Monday that my teaching drained too much from me. Darn, that balance concept keeps popping up. There is no magic pill for this condition. There is no special surgery. Narcolepsy just is. Thus, I will go to sleep at 10 PM and get up at 5:30 AM and do my best to find the routine that will help me stay as balanced as possible.
I happen to be someone who had an awful reaction to the other standard narcolepsy treatment. The American Academy of Sleep Medicine determined in December 2007 that Xyrem and Provigil (modafinil) are the best way to treat narcolepsy. The Xyrem allows the narcoleptic to have a more restful sleep, while the Provigil helps to keep the patient more alert during the daytime. For many patients the combination works extremely well. Unfortunately, my friend is having trouble with the Xyrem, and I nearly lost my mind (and my body) taking Provigil. It made me incredibly anxious, particularly in the morning. I know that it worked better than either of my stimulants at keeping me alert, but I am convinced it simply worked too well. I am convinced that the half hour I spent each morning curled in the fetal position was the result of the current dose interacting with the previous days dose (all while coming out of my night time Xyrem dose). I also lost weight hand over fist. I am not sure what the total weight loss was, but I know that I lost 20 pounds in a six weeks period. For the final three weeks, I ate multiple times during the day, cramming in food until it hurt. I still dropped 10 pounds in the course of those three weeks. When I finally got in to see my doctor, he insisted that I stop the Provigil. The anxiety cleared within 36 hours, and my appetite returned.
Since then, I struggled to function on a sizable dose of methylphenidate (Ritalin) and now get by on 50 mg of amphetamine each day. Friends who know how much amphetamine that I take are stunned when I tell them that it simply lets me get out of bed. It does not give me a tremendous boost of energy. Instead, I simply feel like I can actually survive my day. In fact I fell back asleep and faded in and out during this past Sunday morning after taking the amphetamine. That is insane, but that is narcolepsy.
I know this frustration is on my mind today because of my friend, but learning of another narcoleptic's struggle regularly triggers these emotions for me. I would guess that others with the condition experience something similar. How can I not read about someone else's hardship with this bizarre condition and immediately have my own wounds reopen. Beyond the medication roulette that so many of us play, our physicians often are more troublesome than anyone could imagine. This disease is not well understood. As a result, only a handful of doctors (even those in the specialties that treat it - pulmonary and neurology) learn much about it. My first pulmonary doctor did have the insight to order the polysomnogram (an overnight sleep study) and the MSLT - Multiple Sleep Latency Test (basically, a series of naps). What he did NOT do is tell me to stop taking my antidepressant. I have no idea if my narcolepsy would have been identified three years earlier, but I certainly am suspicious.
In that same vein, many other narcoleptics have had doctors suddenly re-evaluate their conditions. They go to new physicians who question the old diagnosis. Some even have doctors who refuse to believe the obvious symptoms that the patients exhibit and will not order the proper sleep tests. As a result most narcoleptics feel like they are banging their heads against brick walls - ones with big, sharp spikes popping out at random intervals. Certainly, the only choice is to cope, but that can be so hard when fatigue is your constant companion. I am lucky. My narcolepsy, while a huge burden, is not accompanied with cataplexy (at least not yet). If I do develop cataplexy I will likely be unable to drive. Thankfully, I can still do my job, although only part-time. I can also help my wife and play with my daughter. But even today I am angry about what I did not do. I finished my grades and cleaned my classroom. I dropped off items for my summer course and did some shopping. I will even manage to do some cleaning, but it is NOT enough. My wife also had a rough day. She is now out playing ultimate Frisbee, which she needs to do. If I don't get the kitchen cleaned, I will be letting her down, but worse I will be creating more work for one of us down the road.
Narcolepsy is an evil and silent menace. Daily, I feel like I wade into combat with it. Today was hard because it seems to have the upper hand on a friend. Maybe that helped it have the upper hand on me too. I know I have been off today. Some of it is the lack of "teaching" in my day. Of course, I will likely write next Monday that my teaching drained too much from me. Darn, that balance concept keeps popping up. There is no magic pill for this condition. There is no special surgery. Narcolepsy just is. Thus, I will go to sleep at 10 PM and get up at 5:30 AM and do my best to find the routine that will help me stay as balanced as possible.
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