What a difference a day makes! I knew that I would pay a price for staying yesterday (and for not worrying about the energy that I was expending), but I had no idea that level, extent, or immediacy that the payback would affect my entire family. Narcolepsy reared its ugly head and brought along some other friends as soon as my day began today. We all got up slowly because we had gotten home so late. At the same time, I knew that my wife desperately wanted to get us all to Church - we have missed Mass far too often of late. Even though my body had NO interesting in getting going, I was determined to get moving so we could get to Mass.
Our daughter was far less enthusiastic about the prospect of Mass, but she did hope into the shower after my wife's quick shower. Unfortunately, my daughter stayed in the shower until minutes before our agreed upon departure time. My wife, who was rightfully cranky given our late night and the horrid traffic on the way home, let us both know that she was frustrated that we were likely not leaving at the agreed upon time. Hoping to mitigate the situation, I decided to forgo a shower (since there was NO way I could take one and have us leave on time), but I also resented that fact and that my daughter was not being respectful of the time or my wife. Nonetheless, we were ready to go at 9:35 AM which had been the agreement. Unfortunately, I could hear my daughter and my wife still exchanging comments before I even left the house. Since I was already frustrated and upset, their fighting only exacerbated my own angst, but I knew that my wife needed me to stay "upbeat" so I stuffed those emotions too.
My daughter continued to push my wife, even after my wife said the discussion was over. As a result, we had gone now more that a quarter of a mile and were sitting at a stop light. My wife then chose to mutter more negative and general comments under her breathe. I, of course, heard them. I had already been fighting the urge to scold my daughter for her behavior, and the reality is that I had not wanted to go to church in the first place. In fact, I was struggling to understand how we could be on our way to church when we were clearly being extremely UNchristian to each other. Finally, my fury over the fact that we had stayed late because of my daughter (which she had already forgotten) boiled over. Rather than blow up in the car (and make things worse), I got out of the car and said that I was going home. Of course, that action only served to make things worse, particularly for my wife, who was already feeling unsupported and disrespected. By the time I had gone a block and a half, my wife had turned around and had returned to get me. Her tone and behavior told me that she was not going to let me walk home, so I got back in the car.
We were then silent all the way to Mass. My nerves were a tad frayed because my wife's driving was a bit aggressive, but I was also furious because I did not want to be there and because my daughter's behavior had been at the core of much of this, yet she was oblivious to that (as she should be at age twelve). As my wife shut off the car, she asked us to go into the church without her. I said, "No." She then told me she needed the time, and I still declined because, "I am only here because you want me here." The statement was true, but was not fair to my wife. I also realized later that a deeper concern was also behind the response. I was worried both about what my wife might do (she was horribly upset) and what I might say to my daughter.
I have struggled a great deal in the last few years with how to talk to my daughter, particularly when it involves my narcolepsy. She has actually told me, twice, that I use my narcolepsy as an excuse. She, of course, has NO idea how hurtful that comment is, but my mind reels at what might have happened had I gone towards church with my daughter, but without my wife. If I had tried to talk to our daughter about how her behavior (and ours) had led to the fight, particularly the fact that we had stayed so late because our daughter was bent out of shape when we tried to leave at a reasonable time, I know that she would have lashed out at me. Given where I was at, I have no doubt that awful things would have ensued.
Fortunately, Mass was wonderful, as it so often is. Both my wife and I noted that the opening song was all about forgiveness. We did have a long conversation when we got home. At one level, all is forgiven, but the tenor of the conversation also impacted me in another way. Clearly, I hurt my wife today, and she hurt me. We also need to do a better job of helping our daughter understand our expectations of her and of her comments to us. But, we have been trying to do that. My wife and I both know that we need to do "more," but neither of us knows where we will find that "more." Certainly, we will work through our fights and forgive each other and our daughter. That does not change the reality that sitting in the middle of all of this is the narcolepsy. My wife DOES do more of the housework and planning. She is already tapped out by full-time work, ful-time parenting, and full-time partnering. I, too, am doing my best, but I have a chronic condition that limits my abilities. If I put too much into my work, everything else suffers. If I neglect myself, everything else suffers. If I dote on my wife or daughter, everything else suffers. Such is the nature of a chronic condition.
The deepest lesson out of today is to continue to let go. I control little of what happens in my life. Bad days come, sometimes sooner, sometimes later. I knew that having fun yesterday would exact a cost, but I was unprepared to face it when it arrived because I didn't think it would come like this. I need to be more honest with myself and my wife. I should have voiced my concerns about church the moment we got up. Even better though, I should have helped my wife figure out what might or might not happen if we stayed late yesterday. Better still, would have been for all three of us to agree to a plan well before the Fourth of July ever arrived. By doing that, we would have all had clear understandings of how the day would play out. What I con't do is let a day like today cause me to only worry about what might come. I also need to keep pushing myself to enjoy the moment. I think my realization of that is progress in and of itself. I have no doubt that if something like this would have happened even a year ago that I would have sworn that I would never stay out past ten PM. That is, of course, unreasonable and irrational, but it tends to be my baseline reaction to "mistakes." I have made numerous mistakes in the last two days. I need to own them, ask for forgiveness, forgive myself, and appreciate the good things that happened in between my errors. I am not "feeling" that yet, but at least I "know" that it is a far more appropriate response. Hopefully, I will continue to learn as my journey continues with my narcolepsy in tow.
Today, though, that attitude is hard to maintain. I am wiped out in general, and then I got way off my current sleep schedule and spent tremendous amounts of energy wrestling with my thoughts and emotions today. Things will get better, but I feel like I am once again muddling through a Sunday, barely doing anything productive, and wondering how I will find a decent groove to be healthy and mildly productive in my life while not grossly upsetting my wife and daughter on a frequent basis. I deeply dislikes days like this!
Showing posts with label Rage. Show all posts
Showing posts with label Rage. Show all posts
Sunday, July 5, 2009
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.
Sunday, September 7, 2008
Depressing Dangers
I find it fascinating how a weekend can spin on a dime. Yesterday was fantastic, while today is not. My day has been alright. I actually held to some scheduled times that I set for myself (which is progress), but my mid-afternoon and evening fell apart. In some ways I got swept up in "drama," as my students would call it. Of course, the reality of the situations is far more than that. One of the ugliest aspects of narcolepsy is the depression that it can cause.
In recent days a friend (one of many I have met in online narcolepsy support groups) has written a few things that have me deeply concerned. She is definitely depressed. The disease alone can do that. Imagine the reality of it. Narcolepsy doesn't allow you to sleep well (often even if you are one a medication to help you sleep). As a result you spend your entire day exhaust (often even if you take some type of stimulant). Beyond feeling exhausted, you might have cataplexy and lose control of certain muscles at times (making you feel clumsy and awkward), but even if you don't have cataplexy, the fatigue drags at you. You can't do everything that think think you should. Others wonder why you aren't getting your work done. Many narcoleptics are called lazy by their colleagues and family. They are told to get more sleep or to drink some coffee. In many ways the disease is a nightmare. Narcoleptics look and (generally) act like able-bodied persons, but they actually have a debilitating disease. One that forces them to perform far below what they (and others) think should be the case. How could that cause depression?!?
My friend, though, has even more going on in her life. She recently moved in an attempt to get her life back on track. The move has left her in a new place with few friends. Worst of all, she is among the millions of U.S. citizens without health insurance. She is running out of narcolepsy meds and can't see a doctor. Needless to say, I am worried.
One of her posts, though, caused another narcoleptic a great deal of stress. This second woman saw my friend's post, and it cut this woman to the core. My friend's post in my eyes is a cry for help, but due to events and stress in this other narcoleptic's life, she saw it as counterproductive and giving up. Much angst ensued, including two other friends getting involved and responding with posts. In the end I wound up trading a number of messages directly to the narcoleptic woman who got so upset at my friend's message. It still bothers her, but I think she simply appreciated being able to tell someone her story.
In all of the consternation, I kept reminding myself how fragile all of this is. Narcolepsy truly is an insane condition. I take drugs to help me sleep at night and others to help me stay awake during the day. That is wrong! It is a complete paradox. Even more amazing is the fact that so many narcoleptics fight like mad to continue to function. A good friend offered the thought to me that we narcoleptics have to have this condition. If we didn't, we would wind up taking over the world. It sounds funny - until you meet other narcoleptics and realize how hard we all drive ourselves (and yet still feel inferior).
While all of this has been happening around my friend's post, I also had the chance to read up on the life of this amazing sixteen year old, narcoleptic girl in Singapore. This young woman realized that something was wrong with her health, disregarded every message that she got that it was in her head, researched like mad on the Internet, read about narcolepsy, dialogued with a number of us online, made her own appointments with a sleep doctor, and eventually got diagnosed. She also managed to do this within a month or so. Yet, in the face of this, her parents still think that she is lazy. She is in trouble at school because she is not performing well academically (they allow her no excuses), and she thinks she is letting people down. How sad is that? For any sixteen year old to be that resourceful is amazing, but add in the fact that she has narcolepsy, and she should be receiving medals not insults.
I wish there was some way to explain to people that narcolepsy is incredibly hard. Even as I learn to live with it, I daily fight my own messages that I "should" be doing more. The fact of the matter is that without medication my brain function would be comparable to a non-narcoletic who had not slept for 72 hours. With medication it is better than that, but I am still wiped out most of the time. AND, my narcolepsy is not nearly as severe as others. It saddens me so that many of the narcoleptics that I know face scorn from the people closest to them - parents, siblings, friends. How is that just? I hope that all of the people who are on my mind tonight - my depressed friend, the upset woman who is my new friend, the two others who engaged in the dialogue, the young woman in Singapore - are all able to find some peace and strength in their lives. I am blessed to have the family and friends that I do. I am also fortunate to have a local support group that is growing stronger. Plus, I get to go to a national convention for narcoleptics in less than a month, or at least I think I do. Amid the other stressors today, I learned that my account on the Narcoleptic Network Online Community is not working. When I couldn't log in, I tried to use the help functions, only to be told that "no member has that information." So, I either did something very wrong, or it is some computer glitch. I sent off a couple of requests for help, but have heard nothing yet. Invariably, I am already blaming myself, and a part of my brain is convinced that I have gotten myself thrown out of the group before I ever got to go to the convention. While the thinking is completely irrational, it starts to sound pretty accurate as the depression creeps in. Let's hope that I am totally wrong and am able to access my account again soon.
In recent days a friend (one of many I have met in online narcolepsy support groups) has written a few things that have me deeply concerned. She is definitely depressed. The disease alone can do that. Imagine the reality of it. Narcolepsy doesn't allow you to sleep well (often even if you are one a medication to help you sleep). As a result you spend your entire day exhaust (often even if you take some type of stimulant). Beyond feeling exhausted, you might have cataplexy and lose control of certain muscles at times (making you feel clumsy and awkward), but even if you don't have cataplexy, the fatigue drags at you. You can't do everything that think think you should. Others wonder why you aren't getting your work done. Many narcoleptics are called lazy by their colleagues and family. They are told to get more sleep or to drink some coffee. In many ways the disease is a nightmare. Narcoleptics look and (generally) act like able-bodied persons, but they actually have a debilitating disease. One that forces them to perform far below what they (and others) think should be the case. How could that cause depression?!?
My friend, though, has even more going on in her life. She recently moved in an attempt to get her life back on track. The move has left her in a new place with few friends. Worst of all, she is among the millions of U.S. citizens without health insurance. She is running out of narcolepsy meds and can't see a doctor. Needless to say, I am worried.
One of her posts, though, caused another narcoleptic a great deal of stress. This second woman saw my friend's post, and it cut this woman to the core. My friend's post in my eyes is a cry for help, but due to events and stress in this other narcoleptic's life, she saw it as counterproductive and giving up. Much angst ensued, including two other friends getting involved and responding with posts. In the end I wound up trading a number of messages directly to the narcoleptic woman who got so upset at my friend's message. It still bothers her, but I think she simply appreciated being able to tell someone her story.
In all of the consternation, I kept reminding myself how fragile all of this is. Narcolepsy truly is an insane condition. I take drugs to help me sleep at night and others to help me stay awake during the day. That is wrong! It is a complete paradox. Even more amazing is the fact that so many narcoleptics fight like mad to continue to function. A good friend offered the thought to me that we narcoleptics have to have this condition. If we didn't, we would wind up taking over the world. It sounds funny - until you meet other narcoleptics and realize how hard we all drive ourselves (and yet still feel inferior).
While all of this has been happening around my friend's post, I also had the chance to read up on the life of this amazing sixteen year old, narcoleptic girl in Singapore. This young woman realized that something was wrong with her health, disregarded every message that she got that it was in her head, researched like mad on the Internet, read about narcolepsy, dialogued with a number of us online, made her own appointments with a sleep doctor, and eventually got diagnosed. She also managed to do this within a month or so. Yet, in the face of this, her parents still think that she is lazy. She is in trouble at school because she is not performing well academically (they allow her no excuses), and she thinks she is letting people down. How sad is that? For any sixteen year old to be that resourceful is amazing, but add in the fact that she has narcolepsy, and she should be receiving medals not insults.
I wish there was some way to explain to people that narcolepsy is incredibly hard. Even as I learn to live with it, I daily fight my own messages that I "should" be doing more. The fact of the matter is that without medication my brain function would be comparable to a non-narcoletic who had not slept for 72 hours. With medication it is better than that, but I am still wiped out most of the time. AND, my narcolepsy is not nearly as severe as others. It saddens me so that many of the narcoleptics that I know face scorn from the people closest to them - parents, siblings, friends. How is that just? I hope that all of the people who are on my mind tonight - my depressed friend, the upset woman who is my new friend, the two others who engaged in the dialogue, the young woman in Singapore - are all able to find some peace and strength in their lives. I am blessed to have the family and friends that I do. I am also fortunate to have a local support group that is growing stronger. Plus, I get to go to a national convention for narcoleptics in less than a month, or at least I think I do. Amid the other stressors today, I learned that my account on the Narcoleptic Network Online Community is not working. When I couldn't log in, I tried to use the help functions, only to be told that "no member has that information." So, I either did something very wrong, or it is some computer glitch. I sent off a couple of requests for help, but have heard nothing yet. Invariably, I am already blaming myself, and a part of my brain is convinced that I have gotten myself thrown out of the group before I ever got to go to the convention. While the thinking is completely irrational, it starts to sound pretty accurate as the depression creeps in. Let's hope that I am totally wrong and am able to access my account again soon.
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.
Sunday, June 8, 2008
Wrestling with Rage
I have always had a problem with extreme outbursts. As a child I nearly snapped my own dog's neck. I also shattered a plate of spaghetti when my emotions overwhelmed me. My men's group finally got to hear about my bathroom abuse when we met last Sunday. I have been able to keep my temper in check for the last few years, but lately I find that I am struggling with my old adversary - uncontrolled animosity.
The urge to lash out still surprises me. My day rolls along decently until some nondescript moment when a tiny inconvenience sends my moods into a rolling boil. Last Sunday (and even tonight to a lesser extent), it was my daughter playing the piano. How insane is that?!? Fortunately, I was able to keep myself in check last weekend, and tonight I never reached the stage of irrationality that tends to scare even me. I do know that I desperately need to be aware of these spikes in my emotions. As a person who has put a fist through a wall, a door and a kitchen cabinet (and attempted to do so recently in a bathroom), I can't afford to assume that "everything will be alright."
I do believe that this recent relapse of rage is connected to pushing myself more of late. I don't offer that insight as an excuse, but simply as an observation. I am attempting to learn my limits within the confines of narcolepsy. One of the best lessons of the past few months is that my boundaries change daily. The extent of my patience and energy is tied to my daily mood, my previous night's sleep, my previous day's work load, my upcoming schedule, my internal demands and expectations, my external demands and expectations, my wife and daughter's behavior, my sinus conditions, my cats, traffic and so many other things my head is literally spinning even pondering it. Now, that is the case for everyone, but I also have a condition that makes me exhausted as a starting point. Loading those other realities on top of narcolepsy is like packing nitroglycerin safely within cases of TNT. I still need to live my life, though.
If I simply retreat from the world, my depression will destroy me. I need to interact with the world. I need an outlet that lets me engage with others. I also need to work on recognizing my own signs and triggers. I must find the language that can nicely let others, particularly my wife and daughter, know that my daily stew is simmering or boiling or over running the pan. No one should be forced to endure my irrational outbursts, including me. At the same time, I must own the rage that is within me. Certainly, it is as much a part of me as the joy and sorrow that are far more endearing emotions. Denying my anger and ire is what gives them unnerving power. And, when I am painfully honest, it is a minor miracle that I don't spend a majority of my day feeling extreme frustration given the nature of my condition. Narcolepsy is AWFUL, and I have a right to be completely irrational at times because of how it screws up my life.
My rage scares my more than I care to admit. I need to keep confronting it, though. It will not go away, not can I deny its existence. Doing so will only ensure that I will eventually do serious harm to myself or someone else. Instead, I need to allow myself safe ways to experience all of my emotions. I need to connect with every part of myself. It stuns me that the longer I continue on this journey to find peace, the more distance it seems that I must cover. Isn't that the way these things always go, though?
The urge to lash out still surprises me. My day rolls along decently until some nondescript moment when a tiny inconvenience sends my moods into a rolling boil. Last Sunday (and even tonight to a lesser extent), it was my daughter playing the piano. How insane is that?!? Fortunately, I was able to keep myself in check last weekend, and tonight I never reached the stage of irrationality that tends to scare even me. I do know that I desperately need to be aware of these spikes in my emotions. As a person who has put a fist through a wall, a door and a kitchen cabinet (and attempted to do so recently in a bathroom), I can't afford to assume that "everything will be alright."
I do believe that this recent relapse of rage is connected to pushing myself more of late. I don't offer that insight as an excuse, but simply as an observation. I am attempting to learn my limits within the confines of narcolepsy. One of the best lessons of the past few months is that my boundaries change daily. The extent of my patience and energy is tied to my daily mood, my previous night's sleep, my previous day's work load, my upcoming schedule, my internal demands and expectations, my external demands and expectations, my wife and daughter's behavior, my sinus conditions, my cats, traffic and so many other things my head is literally spinning even pondering it. Now, that is the case for everyone, but I also have a condition that makes me exhausted as a starting point. Loading those other realities on top of narcolepsy is like packing nitroglycerin safely within cases of TNT. I still need to live my life, though.
If I simply retreat from the world, my depression will destroy me. I need to interact with the world. I need an outlet that lets me engage with others. I also need to work on recognizing my own signs and triggers. I must find the language that can nicely let others, particularly my wife and daughter, know that my daily stew is simmering or boiling or over running the pan. No one should be forced to endure my irrational outbursts, including me. At the same time, I must own the rage that is within me. Certainly, it is as much a part of me as the joy and sorrow that are far more endearing emotions. Denying my anger and ire is what gives them unnerving power. And, when I am painfully honest, it is a minor miracle that I don't spend a majority of my day feeling extreme frustration given the nature of my condition. Narcolepsy is AWFUL, and I have a right to be completely irrational at times because of how it screws up my life.
My rage scares my more than I care to admit. I need to keep confronting it, though. It will not go away, not can I deny its existence. Doing so will only ensure that I will eventually do serious harm to myself or someone else. Instead, I need to allow myself safe ways to experience all of my emotions. I need to connect with every part of myself. It stuns me that the longer I continue on this journey to find peace, the more distance it seems that I must cover. Isn't that the way these things always go, though?
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