Although I seem to be handling my struggles better, I find it infuriating that my narcolepsy seems worse than ever. I know that my condition moves in cycles, and I am clearly in a down turn at this time. Still, getting up in the morning is more difficult, and my evening peter out far sooner than they did last year. I am scared that narcolepsy is progressive. I realize that my amphetamine dose is likely less effective, but I also doubt that the drug's impact has curtailed to the extent that I am once again experiencing fogginess in my thinking and the possibility of micro-naps. Even today, my drive home from school felt much closer to the automatic behavior rides I remember from my pre-diagnosis days.
Adding to my concern is that I am at a loss as to where I should turn medically. Since my sleep doctor did not even both to come into the room during my last visit, I doubt he will be much help. While he definitely understands the basics of narcolepsy, he is a pulmonary doctor whose true focus is obstructive sleep apnea. What I need is a neurologist who is well versed in sleep. Sadly, such physicians are few and far between. The "premier" group in the Minneapolis and Saint Paul area apparently has a narrow view of narcolepsy. If you are not text book, then you do NOT have narcolepsy. Since I am functioning less well on my current medicinal routine, I highly doubt that "losing" my diagnosis would do me much good. I boggles my mind that I am NOT going to a doctor because I am afraid that the doctor might tell me I do not have narcolepsy. I KNOW that I have narcolepsy, but the fact that I personally have talked to people who have been to this group worries me enough that I am not going to take the risk.
In many ways my current situation underscores the ridiculous reality that far too many PWNs face - we have a disease that does not "fit" in the contemporary structure of medicine. Most specials focus on a specific body system, but sleep medicine covers an enormous range. Obstructive sleep apnea alone involves the throat, the lungs, the brain, and even the heart and other organs when untreated. So, one can find sleep doctors who are ENTs, pulmonary specialists, neurologists, and even cardiovascular physicians. And, the essential mechanism of OSA is fairly well understood. Narcolepsy on the other hand is an autoimmune disease in which an environmental trigger has caused a genetic predisposition to activate, resulting in the body attacking small cells in the hypothalamus. Thus, those same sleep doctors who treat OSA periodically get PWNs as patients. But, few of them understand narcolepsy (which is still in its infancy in terms of medical insight). The situation only worsens when one realizes that the limited number of PWNs and the extreme nature of our drugs (class II stimulants and sleep aides like sodium oxybate) provide little to no financial incentive for any doctor considering sleep as a primary area of interest. The one small ray of hope is that the recent discovers about narcolepsy may spark significant interest among immunologists - now that it is clear that narcolepsy is an autoimmune disease.
None of that rambling helps my overly sleepy state, however. I remain proud of myself for accepting my situation and for pushing ahead with the best attitude that I can muster. Nonetheless, I abhor that mowing my small lawn today completely did me in. That comes on the heels of a Saturday and Sunday that saw me accomplish little because I was drained from talking to my wife and from confronting another parent. All of that happened on Saturday, but I needed all of Sunday to recover. In fact, I would argue that some of my current lethargy is also linked to my mental and emotional exertion on Saturday. While I know that I am doing the best that I can, the rational side of my brain is screaming about how pathetic the reality is. Yet, I have no choice, but to breath and to accept my disability.
I am looking forward to the Narcolepsy Network conference this weekend. While my relationship with the organization feels shaky at this time, I am thrilled to be going somewhere where my "norm" IS the "norm." Sitting in a room, or even having a casual conversation with a fellow PWN, is tremendously empowering. It reminds me that I am not insane. It also underscores for me that this disease is awful, and yet it is also manageable. Granted, I need to keep working to accept my limits, but I can be productive even with narcolepsy impeding me much of the time.
Showing posts with label Healthcare. Show all posts
Showing posts with label Healthcare. Show all posts
Monday, October 19, 2009
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.
Monday, April 13, 2009
Nasal Nightmare
Typically, I avoid discussing my other health woes here, both because they are minor in comparison to my narcolepsy and because I rarely can do much about them, so I avoid dwelling on them. That said, my sinuses threw me a curve ball today. I have had chronic sinusitis for years. I actually think that it is connected to my compromised immune system (and thus my narcolepsy), but I have been "dealing" with my crazy nose for years longer than I have been managing my narcolepsy. Every day, I rinse my sinuses in the morning and at night with a saline solution (SinusRinse made by NeilMed) and with an antibiotic solution. Things have improved since I started that routine in 2004, but I still have regular swelling and inflammation throughout my sinuses.
Every month to two months, I go see my ENT. He is great and I appreciate his candor. Typically, he cultures my sinuses on the left side (which is often worse) and then literally vacuums out my sinuses. In the last few years, I have not had many infections, and my sinuses have looked "better." They are still constantly swollen, but it is less than in the past and they are usually limited in their inflammation.
Today, I was expecting things to follow the usual process. I had a horrid cold in March, and I know that it took me weeks to shake it. I still have had a lot of congestion, but my nasal discharge has looked better recently. While I never feel "great," I knew that I was on the upswing for my sinuses. When my ENT looked at my left side, he thought my sinuses looked better (still swollen, but not inflammation and clear mucus). He was actually considering NOT doing a culture. Then, he looked at my right side. Apparently, it was awful. He vacuumed some, then cultured, then vacuumed more. THEN, he switched tips to "get around the corner." Less than fun, I assure you.
The silver lining in this is that I likely do have a sinus infection. We will see what the culture says, but the infection is probable to say the least. That means that some of my current struggles with energy are a result of my body battling a bacterial infection. It sounds bizarre to be "glad" about that, but I have been so wiped out this break that I was worried that my narcolepsy was getting significantly worse. That still might be the case, but learning that my immunue system might have been in overdrive for other reasons does give me a bit of hope. If I am indeed infected, the ensuing antibiotic will likely perk up my system. I could definitely use an infusion of energy. I will say that it is the first time I was genuinely excited about a possible sinus infection. The other bright spot is that I am managing my narcolepsy well enough that if this is a sinus infection, it did not completely knock me out as sinus infections have done in the past. Apparently, I am just giddy about bacteria growing in my right ethmoid sinus! Yippee!
Every month to two months, I go see my ENT. He is great and I appreciate his candor. Typically, he cultures my sinuses on the left side (which is often worse) and then literally vacuums out my sinuses. In the last few years, I have not had many infections, and my sinuses have looked "better." They are still constantly swollen, but it is less than in the past and they are usually limited in their inflammation.
Today, I was expecting things to follow the usual process. I had a horrid cold in March, and I know that it took me weeks to shake it. I still have had a lot of congestion, but my nasal discharge has looked better recently. While I never feel "great," I knew that I was on the upswing for my sinuses. When my ENT looked at my left side, he thought my sinuses looked better (still swollen, but not inflammation and clear mucus). He was actually considering NOT doing a culture. Then, he looked at my right side. Apparently, it was awful. He vacuumed some, then cultured, then vacuumed more. THEN, he switched tips to "get around the corner." Less than fun, I assure you.
The silver lining in this is that I likely do have a sinus infection. We will see what the culture says, but the infection is probable to say the least. That means that some of my current struggles with energy are a result of my body battling a bacterial infection. It sounds bizarre to be "glad" about that, but I have been so wiped out this break that I was worried that my narcolepsy was getting significantly worse. That still might be the case, but learning that my immunue system might have been in overdrive for other reasons does give me a bit of hope. If I am indeed infected, the ensuing antibiotic will likely perk up my system. I could definitely use an infusion of energy. I will say that it is the first time I was genuinely excited about a possible sinus infection. The other bright spot is that I am managing my narcolepsy well enough that if this is a sinus infection, it did not completely knock me out as sinus infections have done in the past. Apparently, I am just giddy about bacteria growing in my right ethmoid sinus! Yippee!
Thursday, December 25, 2008
Merry Madness
I ended the medication holiday this morning. I didn't get out of bed until 9 AM, but part of that was waiting for my daughter to get up. How cool is it that my daughter was the last one to wake up on Christmas morning? I have a super cool kid. We had to wait to go out to the kitchen and living room because our daughter wanted to see our reactions. Apparently, she decorated from midnight until 2 AM. It was impressive! She made a wonderful banner and set out ALL of her stuffed animals. So, I took my first dose of amphetamine at 9 AM.
The most amazing thing, though, is that I only took 10 mg. I did take a second dose at 3 PM, but once again it was only 10 mg. I know that I would have needed more if I had been teaching today, but I love that the medication holiday worked well enough that I could take a third of my typical dose and feel highly functional all day. We had a glorious time opening gifts this morning. We then got going on work. My wife did nap, but I managed to keep going throughout the afternoon. I washed dishes, cleaned the bathroom, put a number of things away, and even organized a huge pile of stuff that has been sitting around for months. The work was spread out over hours, and I made sure that I did not overdo anything. Still, I am stunned by my level of productivity.
The best part of the day came this evening. My folks are in town and arrived around 9 PM. I was still finishing up some of my sorting, but it was awesome to talk to them. My sister and brother-in-law also decided to hang out for a while. We will all be together again tomorrow for a second Christmas (yippee). More than anything, though, it was super cool to connect with my parents in a relaxed way. I also got the chance to show my dad number of things on the computer - TED talks, iTunes U, Radio Heartland, and the final broadcast material from MPR's Morning Show. He was stunned, and I was thrilled that I provided him some meaningful items that he will truly enjoy.
I need to get to sleep, but it was a great day. I was already pleased with my medication holiday, but the realities of today clearly proved that I made a brilliant decision in taking the time off from my amphetamine. Clearly, the break from my stimulant has helped my body in a number of ways. Best of all, I know that a third of my normal dose gave me plenty of energy. It is incredible to learn that a brief respite from my regular routine can have such a drastic impact on functionality.
The most amazing thing, though, is that I only took 10 mg. I did take a second dose at 3 PM, but once again it was only 10 mg. I know that I would have needed more if I had been teaching today, but I love that the medication holiday worked well enough that I could take a third of my typical dose and feel highly functional all day. We had a glorious time opening gifts this morning. We then got going on work. My wife did nap, but I managed to keep going throughout the afternoon. I washed dishes, cleaned the bathroom, put a number of things away, and even organized a huge pile of stuff that has been sitting around for months. The work was spread out over hours, and I made sure that I did not overdo anything. Still, I am stunned by my level of productivity.
The best part of the day came this evening. My folks are in town and arrived around 9 PM. I was still finishing up some of my sorting, but it was awesome to talk to them. My sister and brother-in-law also decided to hang out for a while. We will all be together again tomorrow for a second Christmas (yippee). More than anything, though, it was super cool to connect with my parents in a relaxed way. I also got the chance to show my dad number of things on the computer - TED talks, iTunes U, Radio Heartland, and the final broadcast material from MPR's Morning Show. He was stunned, and I was thrilled that I provided him some meaningful items that he will truly enjoy.
I need to get to sleep, but it was a great day. I was already pleased with my medication holiday, but the realities of today clearly proved that I made a brilliant decision in taking the time off from my amphetamine. Clearly, the break from my stimulant has helped my body in a number of ways. Best of all, I know that a third of my normal dose gave me plenty of energy. It is incredible to learn that a brief respite from my regular routine can have such a drastic impact on functionality.
Tuesday, December 23, 2008
Faithful Fatigue
When I got out of bed this morning (I hesitate to call the experience "waking up"), I was convinced that day four would be far worse than day three. The extreme effort of feeding three cats left me exhausted for the next hour. I eventually stumbled to the living room and promptly slept for the next hour and a half. Finally, I forced myself to shower around 10 AM. My wife and daughter had dental appointments at 11 AM. I didn't fall asleep in the lounge and did hang in through the other errands. Lunch was good too.
Then, at acupuncture, I was convinced I would fall asleep. I often hover in a near sleep state, but was positive that my body would simply give out today without the stimulants. Interestingly, I found my energy growing throughout the forty minutes that the needles were in me. Some of that might have been the electricity surging into the four needles in my lower legs, but that is not something new. I have been functional enough the rest of the day that I wonder if I have turned a corner on the withdrawal aspect. Certainly, tomorrow will be what it will be, but it is fascinating to ponder how all of this is impacting my body. I also must admit that part of me wishes I could stop the stimulants and just have an acupuncture treatment each morning. Of course that would be impossible, unless my amazing wife wants to spend two years learning how to be an acupuncturists on top of being the best medical writer and editor that I know (or that most, if not all, of the doctors who work with her know as well). The chiropractic appointment after the acupuncture also seemed to help.
That being said, it is incredible to realize how sleepy I truly am. Narcolepsy truly is a stunning condition. I know that my Xyrem doses knock me out at night. I get as good a sleep as I can most nights. That means that even with a chemically induced sleep, something is so out of whack that I remain exhausted for a majority of every day. It is humbling to be this dependent on drugs, but it is also good to understand what my body can and cannot do. As I continue to learn more about my condition, it will be fascinating to see where I will go and what life will bring me. Perhaps I will some day be one of those incredible PWNs who does not take stimulants, a person who is comfortable doing what his body allows rather than one who pushes himself to the extreme.
It will be cool to see what tomorrow brings. I need to go to the dentist at 10:30 AM. We also have a few more errands to run. Plus, we need to go to Mass at 4 PM. My daughter is singing in the pre-Mass caroling. I hope that I have a little more energy than I have had the past few days. At the same time, whatever I can muster will be just fine. I have no delusion that I will miraculously "recover." I also know that if I am even more wiped out, I will simply accept that. I have no ability to control the situation. It will also be good to recognize what five days without stimulants is like. That way, I will have more insight for the next medication holiday, which I hope will be similar in length. Who knows, I might even be able to do it during my spring break. I definitely am hoping that I can take a break for at least a week during the summer of 2009.
Then, at acupuncture, I was convinced I would fall asleep. I often hover in a near sleep state, but was positive that my body would simply give out today without the stimulants. Interestingly, I found my energy growing throughout the forty minutes that the needles were in me. Some of that might have been the electricity surging into the four needles in my lower legs, but that is not something new. I have been functional enough the rest of the day that I wonder if I have turned a corner on the withdrawal aspect. Certainly, tomorrow will be what it will be, but it is fascinating to ponder how all of this is impacting my body. I also must admit that part of me wishes I could stop the stimulants and just have an acupuncture treatment each morning. Of course that would be impossible, unless my amazing wife wants to spend two years learning how to be an acupuncturists on top of being the best medical writer and editor that I know (or that most, if not all, of the doctors who work with her know as well). The chiropractic appointment after the acupuncture also seemed to help.
That being said, it is incredible to realize how sleepy I truly am. Narcolepsy truly is a stunning condition. I know that my Xyrem doses knock me out at night. I get as good a sleep as I can most nights. That means that even with a chemically induced sleep, something is so out of whack that I remain exhausted for a majority of every day. It is humbling to be this dependent on drugs, but it is also good to understand what my body can and cannot do. As I continue to learn more about my condition, it will be fascinating to see where I will go and what life will bring me. Perhaps I will some day be one of those incredible PWNs who does not take stimulants, a person who is comfortable doing what his body allows rather than one who pushes himself to the extreme.
It will be cool to see what tomorrow brings. I need to go to the dentist at 10:30 AM. We also have a few more errands to run. Plus, we need to go to Mass at 4 PM. My daughter is singing in the pre-Mass caroling. I hope that I have a little more energy than I have had the past few days. At the same time, whatever I can muster will be just fine. I have no delusion that I will miraculously "recover." I also know that if I am even more wiped out, I will simply accept that. I have no ability to control the situation. It will also be good to recognize what five days without stimulants is like. That way, I will have more insight for the next medication holiday, which I hope will be similar in length. Who knows, I might even be able to do it during my spring break. I definitely am hoping that I can take a break for at least a week during the summer of 2009.
Monday, December 22, 2008
Missing My Meds?
I am on day three of my med holiday. I actually posted it as my Facebook status and a number of PWNs commented. One of the best responses was, "why can't med holidays be as fun as they sound?" On one level I completely agree, but another friend posted that lazy days watching movies aren't all that bad. I certainly see that point too. Since this is my second attempt at a med holiday, I am still learning what they are like. I know that it is the right thing to do for my body, but I also know that day three was definitely tougher than day two. My first attempt in August was only two days long, and I knew that I would have some functionality during the first day, but that the second would be difficult. Sadly, I actually thought that day three might be better. I was wrong.
I have spent the day feeling physically ill, which I know is the withdrawal. It is amazing how even a theraputic dose of a medication can alter your biological baseline so drastically. I can't even imagine how hard it must be for an addict to get off of a drug. The other difficult aspect of the day has been my inability to stay alert for more than 30 minutes at a time. I have managed to do a few things around the house, but I have also crashed repeatedly. Some of that is also the withdrawal, but much of it is "untreated narcolepsy." I am humbled by how dependent I am on my amphetamine. Could I live without it? Yes, but I would not be able to teach - not even part-time. I also have spent the day wondering what it would be like to try driving like this. I have no intention of trying to do that, but it is frightening to realize that without my stimulants I could be completely dependent on others to transport me places.
The other side of that, though, is a gratefulness that I am able to use stimulants to have some level of functionality. I have a number of PWN friends who are unable to drive or work even with stumulants. Others can't find a stimulant that will work or that their bodies can tolerate. The insidious nature of this condition constantly stuns me. I am blessed that my narcolepsy has not completely undermined my life. I realize that it is all a matter of perspective, but I definitely know I would be struggling more if I had to let go of even more of what I "want" to do. Yes, I have lost much, but I am still able to do a job I love and help my family and my friends.
Of course, I certainly recognize that my narcolepsy can progress. Perhaps in another year or two (or month or two), I could reach a point where driving or working will not be possible. I hope that I will be able to accept those things with the same day-by-day approach that has allowed me to remain upbeat during the start of this journey. While I hope those things never come, I understand that much of that is out of my control. Narcolepsy will run its course. I just hope that I can maintain my own ability to accept what the disease brings and then make my own path and decisions.
Tomorrow will be fascinating because I have an acupuncture appointment scheduled. It will be the first time that I have acupuntuncture without a stimulant in my body. Even when I did acupuncture the first time (in 2005), I had methylphenidate and Concerta in my body. And, when I went off all of my meds before I got my narcolepsy diagnosis in 2007, I was going to Langford Chiropractic, but had not started acupuncture there yet. I am not sure if I had any acupuncture during my unintended med holiday last December - when Provigil became a non-option and I had no other stumulant. I will be interested to see how my body responds without the amphetamine.
I guess the final thing that has intriguied me these past three days is the fact that some PWNs do not take stimulants. Some don't need to take them - Xyrem does the trick on its own. Other, though, willingly forgo them. I can't do that, yet. I still want to work at my job. But, it is interesting to consider what I might be able to do without a stumulant. I know that once the withdrawal aspect ended, I would be more functional than I have been these past three days. The question would be, though, how much energy would I have? Perhaps the time will come when I can explore that. For now, I like the idea of stopping my meds for a time, then starting again. I know the amphetamine felt more effective after I did this for two days in August. It will be interesting to see what happens with my longer break this time. It is interesting that although I could not "feel" the effect, I definitely know that the amphetamine was working in DEcember because without it, there is no way I could have made it to work each day.
I have spent the day feeling physically ill, which I know is the withdrawal. It is amazing how even a theraputic dose of a medication can alter your biological baseline so drastically. I can't even imagine how hard it must be for an addict to get off of a drug. The other difficult aspect of the day has been my inability to stay alert for more than 30 minutes at a time. I have managed to do a few things around the house, but I have also crashed repeatedly. Some of that is also the withdrawal, but much of it is "untreated narcolepsy." I am humbled by how dependent I am on my amphetamine. Could I live without it? Yes, but I would not be able to teach - not even part-time. I also have spent the day wondering what it would be like to try driving like this. I have no intention of trying to do that, but it is frightening to realize that without my stimulants I could be completely dependent on others to transport me places.
The other side of that, though, is a gratefulness that I am able to use stimulants to have some level of functionality. I have a number of PWN friends who are unable to drive or work even with stumulants. Others can't find a stimulant that will work or that their bodies can tolerate. The insidious nature of this condition constantly stuns me. I am blessed that my narcolepsy has not completely undermined my life. I realize that it is all a matter of perspective, but I definitely know I would be struggling more if I had to let go of even more of what I "want" to do. Yes, I have lost much, but I am still able to do a job I love and help my family and my friends.
Of course, I certainly recognize that my narcolepsy can progress. Perhaps in another year or two (or month or two), I could reach a point where driving or working will not be possible. I hope that I will be able to accept those things with the same day-by-day approach that has allowed me to remain upbeat during the start of this journey. While I hope those things never come, I understand that much of that is out of my control. Narcolepsy will run its course. I just hope that I can maintain my own ability to accept what the disease brings and then make my own path and decisions.
Tomorrow will be fascinating because I have an acupuncture appointment scheduled. It will be the first time that I have acupuntuncture without a stimulant in my body. Even when I did acupuncture the first time (in 2005), I had methylphenidate and Concerta in my body. And, when I went off all of my meds before I got my narcolepsy diagnosis in 2007, I was going to Langford Chiropractic, but had not started acupuncture there yet. I am not sure if I had any acupuncture during my unintended med holiday last December - when Provigil became a non-option and I had no other stumulant. I will be interested to see how my body responds without the amphetamine.
I guess the final thing that has intriguied me these past three days is the fact that some PWNs do not take stimulants. Some don't need to take them - Xyrem does the trick on its own. Other, though, willingly forgo them. I can't do that, yet. I still want to work at my job. But, it is interesting to consider what I might be able to do without a stumulant. I know that once the withdrawal aspect ended, I would be more functional than I have been these past three days. The question would be, though, how much energy would I have? Perhaps the time will come when I can explore that. For now, I like the idea of stopping my meds for a time, then starting again. I know the amphetamine felt more effective after I did this for two days in August. It will be interesting to see what happens with my longer break this time. It is interesting that although I could not "feel" the effect, I definitely know that the amphetamine was working in DEcember because without it, there is no way I could have made it to work each day.
Saturday, October 18, 2008
MOONS Madness
This past week I twice tried to get decent photos of the full moon. The pictures from the first batch are okay. I have not actually looked at the second set yet. I want them because I am helping get the Midwest Organization of Narcolepsy Support - Minnesota chapter (MOONS-MN) organized. We have set up a new website with a new address - www.moonscentral.net. We are also trying to get the names and addresses for the group organized into a database. That way, we can generate all kinds of good data and be able to help each other more.
Beyond the website, I also traveled to the Minnesota Secretary of State's office to see if the Minnesota Narcolepsy Association could become "re-established" and have the name changed to MOONS. Turns out, it can be done. I filed the appropriate paperwork and now need to get the other planning group folks organized so we can adjust the by-laws appropriately. I also think that this move will help with the dues issues. As nutty as the past few weeks have been, I am proud of myself for taking care of this. Not only is MOONS-MN a non-profit in the state of Minnesota, but I also plan to check with the federal government to see if the Minnesota Narcolepsy Association (now MOONS-MN) still has federal nonprofit status under 501 (c)(3). All around the situation is excellent.
I have high hopes for our group. The two people who got us started are as committed as ever. We also have at least six other people deeply driven to see this group thrive. Now that we know that we are a non-profit for sure, we have a lot of fantastic avenues available. I truly think that MOONS can do awesome work. It gives hope that I will help all of these folks make a difference in the battle against narcolepsy.
Beyond the website, I also traveled to the Minnesota Secretary of State's office to see if the Minnesota Narcolepsy Association could become "re-established" and have the name changed to MOONS. Turns out, it can be done. I filed the appropriate paperwork and now need to get the other planning group folks organized so we can adjust the by-laws appropriately. I also think that this move will help with the dues issues. As nutty as the past few weeks have been, I am proud of myself for taking care of this. Not only is MOONS-MN a non-profit in the state of Minnesota, but I also plan to check with the federal government to see if the Minnesota Narcolepsy Association (now MOONS-MN) still has federal nonprofit status under 501 (c)(3). All around the situation is excellent.
I have high hopes for our group. The two people who got us started are as committed as ever. We also have at least six other people deeply driven to see this group thrive. Now that we know that we are a non-profit for sure, we have a lot of fantastic avenues available. I truly think that MOONS can do awesome work. It gives hope that I will help all of these folks make a difference in the battle against narcolepsy.
Friday, October 10, 2008
Insightful Info One
My plan is to post on topics from the conference throughout the next few days. I need to do this in small chunks or I will never get it done. Please feel free to use the comments section of each post as a place to ask questions. I feel like I learned something in every session that I attended. Part of the reason the weekend overwhelmed me is that information kept buzzing around my brain. All week, I have been trying to remain mindful of each moment, but the thoughts and insights of the conference continue to bombard me. Hopefully, getting some of them out of my head (and into electrons) will allow me to function a bit better at work and around my house.
The most incredible scientific/medical moment of the weekend was the keynote address. I figured listening to Dr. Emmanuel Mignot would be a powerful experience (he is one of the two leading researchers of narcolepsy in the world. The other is Dr. Masashi Yanagisawa at the University of Texas Southwestern Medical Center). Dr. Mignot heads up the Center for Narcolepsy at Standford. He is once again on the verge of a major break through. Here are the basics from his talk:
1. They are using the Human Genome work and Affymetrix 6.0 Array Set: Genome Wide Association to look for other common variants within the genomes of people with narcolepsy with cataplexy. The Array allows blood samples to be tested against 906,600 Single Nucleotide Polymorphisms and 946,000 Copy Number Variations. Thus, with massive sample groups, a research can find common variants within common disease groups. This same testing is being used for a number of other common diseases (including many autoimmune diseases) like Celiac's Disease and Irritable Bowel Syndrome. Basically, the researcher wants to find a high p-value.
2. The paper published by Japanese scientists and Dr. Mignot at the end of September found a couple of genes in a study in Japan that had a smaller population sample (222 PWNs w/ C vs. 389 Control subjects). The two genes involved in the common variant both have roles in the sleep cycle. The study was repeated using a Korean group, a Caucasian group and an African-American group. The correlation was present in the Korean group, but not the other two. So that variant is likely only in Asian populations.
3. Dr. Mignot did a much larger study in the U.S. He tested 809 PWNs w/ cataplexy against 1120 Controls (all who had HLA-DQB1*0602 - this is the autoimmune factor that is definitely involved in causing narcolepsy). While Dr. Mignot did not tell us the name of the gene that they found, he did say that they found one. He also said that the protein that it controls is a part of the immune system and works with HLA like a hand and glove relationship. Needless to say, he is extremely excited about this. The p-value was 10 to the 12th power (which is insanely high). He still must replicate the results before he can publish, but he believes that this is a major discovery. While he still needs blood from 400 more PWNs w/ cataplexy in the U.S. to finish the replication, he is also doing a study in Japan with 800 PWNs and 800 Controls.
4. Finally, he has had the chance to work with five PWNs within a few months of symptom onset. As a result, he has done a western blot on them from their liver and found the same triplet of results. The five also all had recent viral infections and corresponding anti-infection antibodies. There needs to be far more research done, but he believes that Immunologists could devise a way to interrupt the disease process/autoimmune response that leads to narcolepsy.
The only part that is hard in all of this is that it is focused on Narcolepsy with Cataplexy. I might have abnormal or rare cataplexy, but am not sure. Even if I do, I am grouped in the same catagory of Narcolepsy without Cataplexy. As a result of that, my version of this disease might be highly different than what Dr. Mignot has discovered. I hope not. He certainly believes that figuring out Narcolepsy with Cataplexy will provide insights into the full spectrum of Narcolepsy. Nonetheless, it is unnerving to think that what I have is MORE complex than what his YEARS of research have uncovered. Still, it is exciting. The part that gives me the most hope is the clear link to some type of infectious agent having a role as a potential trigger. Even the remote possibility that this condition might be connected to my four bouts of Mono and/or my chronic toncillitis and/or my chronic sinusitis is thrilling.
Here is a link to a published Google Doc of my notes - http://docs.google.com/Doc?id=d6qf3b7_613mp98wg8 . Folks should feel free to check them out. The talk was amazing. Perhaps the funniest thing is that Dr. Mignot completely seems like the absent minded, but brilliant, professor type. His clothes were fairly rumpled and a friend of mine told me that he reminds her of Dr. Oliver Sacks (whose life story was made into the movie Awakenings - Robin Williams plays the Sacks character, Dr. Sayer). Dr. Sacks is also brilliant, but can't seem to button his own clothes correctly. I always find it refreshing when "ordinary" (or even odd-looking) people prove to be extraordinary. Dr. Mignot certainly fits the bill!
The most incredible scientific/medical moment of the weekend was the keynote address. I figured listening to Dr. Emmanuel Mignot would be a powerful experience (he is one of the two leading researchers of narcolepsy in the world. The other is Dr. Masashi Yanagisawa at the University of Texas Southwestern Medical Center). Dr. Mignot heads up the Center for Narcolepsy at Standford. He is once again on the verge of a major break through. Here are the basics from his talk:
1. They are using the Human Genome work and Affymetrix 6.0 Array Set: Genome Wide Association to look for other common variants within the genomes of people with narcolepsy with cataplexy. The Array allows blood samples to be tested against 906,600 Single Nucleotide Polymorphisms and 946,000 Copy Number Variations. Thus, with massive sample groups, a research can find common variants within common disease groups. This same testing is being used for a number of other common diseases (including many autoimmune diseases) like Celiac's Disease and Irritable Bowel Syndrome. Basically, the researcher wants to find a high p-value.
2. The paper published by Japanese scientists and Dr. Mignot at the end of September found a couple of genes in a study in Japan that had a smaller population sample (222 PWNs w/ C vs. 389 Control subjects). The two genes involved in the common variant both have roles in the sleep cycle. The study was repeated using a Korean group, a Caucasian group and an African-American group. The correlation was present in the Korean group, but not the other two. So that variant is likely only in Asian populations.
3. Dr. Mignot did a much larger study in the U.S. He tested 809 PWNs w/ cataplexy against 1120 Controls (all who had HLA-DQB1*0602 - this is the autoimmune factor that is definitely involved in causing narcolepsy). While Dr. Mignot did not tell us the name of the gene that they found, he did say that they found one. He also said that the protein that it controls is a part of the immune system and works with HLA like a hand and glove relationship. Needless to say, he is extremely excited about this. The p-value was 10 to the 12th power (which is insanely high). He still must replicate the results before he can publish, but he believes that this is a major discovery. While he still needs blood from 400 more PWNs w/ cataplexy in the U.S. to finish the replication, he is also doing a study in Japan with 800 PWNs and 800 Controls.
4. Finally, he has had the chance to work with five PWNs within a few months of symptom onset. As a result, he has done a western blot on them from their liver and found the same triplet of results. The five also all had recent viral infections and corresponding anti-infection antibodies. There needs to be far more research done, but he believes that Immunologists could devise a way to interrupt the disease process/autoimmune response that leads to narcolepsy.
The only part that is hard in all of this is that it is focused on Narcolepsy with Cataplexy. I might have abnormal or rare cataplexy, but am not sure. Even if I do, I am grouped in the same catagory of Narcolepsy without Cataplexy. As a result of that, my version of this disease might be highly different than what Dr. Mignot has discovered. I hope not. He certainly believes that figuring out Narcolepsy with Cataplexy will provide insights into the full spectrum of Narcolepsy. Nonetheless, it is unnerving to think that what I have is MORE complex than what his YEARS of research have uncovered. Still, it is exciting. The part that gives me the most hope is the clear link to some type of infectious agent having a role as a potential trigger. Even the remote possibility that this condition might be connected to my four bouts of Mono and/or my chronic toncillitis and/or my chronic sinusitis is thrilling.
Here is a link to a published Google Doc of my notes - http://docs.google.com/Doc
Thursday, October 9, 2008
Disgusting Delay
It is pathetic that I had an amazing experience at the Narcolepsy Network Conference, and THEN I don't write anything about it for almost a week. I also know that I won't actually be able to "catch up" tonight. Still, I knew that I had to relay at least some of the magic that the weekend brought. The weirdest thing is that the "slump" I was in the few weeks before the conference, definitely continued this week. In fact, my co-teachers sent me home on Monday. I was glad that they did, and I now know that I will need to ask for the day after the conference every time that I attend it (which I hope will be a yearly occurrence). Sadly, though, I have remained "off" the entire week. Some of it is simply fatigue. The other problem is that our grades were also due this week. Thus, I killed myself on Tuesday night (and Wednesday morning). I am glad, though, that other than one meltdown, I did hold it together. Much of that should be attributed to the residual joy of the weekend!
As I predicted, nothing could have prepared me for how much I would enjoy the weekend. I knew it would be incredible, and yet the it exceeded my wildest expectations. The amount that I learned in the keynote session alone blew my mind. Mr. Mignot, who runs the lab at Stanford and has had a hand in every major narcolepsy discovery in the last fifteen years, presented preliminary data that points to a clear understanding of the mechanism of narcolepsy's cause. It might not do much good for people who already have narcolepsy, but it will help in developing treatment. It could also mean a reduction in cases. Basically, Dr. Mignot has found a second gene that is involved in narcolepsy. The protein that it controls works in the autoimmune system like a glove to HLA's hand. Researchers already knew that HLA was involved in the destruction of the hypocretin producing cells in the hypothalmus. If Dr. Mignot is right, and this other gene is also involved, he may have proven that narcolepsy is an autoimmune disease. The other element he seems to have undercovered is that a person with these genes needs to experience an intense viral infection for the genes to be activated. Since I have had mono four times, I find that fascinating. I will definitely write more about this in a later entry, but suffice it to say, my knowledge of narcolepsy grew exponentially every second of the conference.
That said, the best part of the conference was meeting other PWNs. The information paled in comparison. Some people at the conference, I have known for quite some time. There were four people from the Minnesota MOONS group also attending the conference. I loved the chance to spend time with them over the three days. I also knew a number of people at the conference from spending time on narcolepsy forums through Facebook, MySpace and the Narcolepsy Network site. To meet them face-to-face, though, was truly breath-taking. Individuals who have been a major part of my life (some of them daily) during the past seven months suddenly appeared before me as flesh and blood. It was glorious. Even better, they are now even more firmly my friends. Even better, though, I made a number of friends who had never been a part of my life before Friday night. Whether it is the young man from Great Britain who battled his government to get the medicine that he needs or the loving dad from Wisconsin who wants to manage his narcolepsy so he can love his children as best he can, I found myself awed by the stories, the people, the love and the determination. People with narcolepsy live lives of meaning and purpose. They treasure each second because sleepiness is always around the next corner.
Having said all of this, the highlight of my weekend was getting a chance to have a much better understanding and insight into someone I deeply respect. The physician who co-leads our Minnesota support group is brilliant. She had to be one of the most sought out people throughout the weekend. I don't know if I have ever met a physician who more clearly personifies compassion and commitment. What made my time with her so wonderful, ironically, is that we interacted as friends. While I have no doubt that she is the best neurologist in Minnesota (and likely the midwest), particularly in terms of sleep issues, I don't want her to be my doctor. I would much rather have her be my friend. The entire experience made the weekend phenomenal. I am grateful for every second.
As I predicted, nothing could have prepared me for how much I would enjoy the weekend. I knew it would be incredible, and yet the it exceeded my wildest expectations. The amount that I learned in the keynote session alone blew my mind. Mr. Mignot, who runs the lab at Stanford and has had a hand in every major narcolepsy discovery in the last fifteen years, presented preliminary data that points to a clear understanding of the mechanism of narcolepsy's cause. It might not do much good for people who already have narcolepsy, but it will help in developing treatment. It could also mean a reduction in cases. Basically, Dr. Mignot has found a second gene that is involved in narcolepsy. The protein that it controls works in the autoimmune system like a glove to HLA's hand. Researchers already knew that HLA was involved in the destruction of the hypocretin producing cells in the hypothalmus. If Dr. Mignot is right, and this other gene is also involved, he may have proven that narcolepsy is an autoimmune disease. The other element he seems to have undercovered is that a person with these genes needs to experience an intense viral infection for the genes to be activated. Since I have had mono four times, I find that fascinating. I will definitely write more about this in a later entry, but suffice it to say, my knowledge of narcolepsy grew exponentially every second of the conference.
That said, the best part of the conference was meeting other PWNs. The information paled in comparison. Some people at the conference, I have known for quite some time. There were four people from the Minnesota MOONS group also attending the conference. I loved the chance to spend time with them over the three days. I also knew a number of people at the conference from spending time on narcolepsy forums through Facebook, MySpace and the Narcolepsy Network site. To meet them face-to-face, though, was truly breath-taking. Individuals who have been a major part of my life (some of them daily) during the past seven months suddenly appeared before me as flesh and blood. It was glorious. Even better, they are now even more firmly my friends. Even better, though, I made a number of friends who had never been a part of my life before Friday night. Whether it is the young man from Great Britain who battled his government to get the medicine that he needs or the loving dad from Wisconsin who wants to manage his narcolepsy so he can love his children as best he can, I found myself awed by the stories, the people, the love and the determination. People with narcolepsy live lives of meaning and purpose. They treasure each second because sleepiness is always around the next corner.
Having said all of this, the highlight of my weekend was getting a chance to have a much better understanding and insight into someone I deeply respect. The physician who co-leads our Minnesota support group is brilliant. She had to be one of the most sought out people throughout the weekend. I don't know if I have ever met a physician who more clearly personifies compassion and commitment. What made my time with her so wonderful, ironically, is that we interacted as friends. While I have no doubt that she is the best neurologist in Minnesota (and likely the midwest), particularly in terms of sleep issues, I don't want her to be my doctor. I would much rather have her be my friend. The entire experience made the weekend phenomenal. I am grateful for every second.
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.
Saturday, September 6, 2008
Mighty MOONS
I just got back from my second MOONS meeting (I figure I can't count the Planning Meeting/suburban shopping nightmare). Even though I knew it would be better than I was expecting, the experience blew me away again. The group interacted even more and is clearly beginning to connect on deeper levels. In fact, the meeting devolved at the end into a series of small conversations which was beautiful to see. Lots of people were having "A-ha" moments throughout the room. The weirdest part is that we never got to the featured speaker. A member of MOONS was going to tell her story, focusing specifically on her pregnancy. But, I think even she would say that things went great. Actually, she is excited to have two more months to use for further development of her material.
Dr. Rogers opened the meeting with a plug for the Narcolepsy Network National Conference being held in Milwaukee, WI from October 3 to October 5. Since I am already registered to go, I brought my flier for it and was able to give it to a wonderful woman sitting next to me. She is now in her 80s, but didn't learn about her narcolepsy until she was 60. She spent most of her life battling this disease and didn't even know it. That is incredible. I was also thrilled to see that a number of the other MOONS folks are considering the conference or are already planning to go.
Dr. Rogers then made an earnest pitch for assistance. She and Charlie, the narcoleptic who has been helping her, know that they can't do this alone. In fact, both of them felt under prepared for this meeting simply because life in general can move too fast. I did find out that the "planning meeting" in July did happen. Dr. Rogers and one other person made it. Turns out I was in the right place, but either got there after they left or before they arrived. The good part is that lots of people are excited to help now. We do have a planning meeting scheduled for three weeks from now. I plan to go and brave shopping madness again. This time, I will work to arrive early and stay until someone shows up. We also set a new date for the next large group meeting. We didn't know it at the time, but we will listen in November to a group member speak about her life with narcolepsy and her pregnancy (that of course is the tabled speaker from today's meeting).
What got us "off track" was some incredible information from Dr. Rogers about tracking your own medical records. It is a good idea to have your own set no matter what your health is like, but it is imperative for people with chronic conditions. By doing so, you can catch errors and be able to clarify your condition for new doctors. Many of us had input as we moved through the material. I have kept my own records for the past four years, but I learned tons of new things to include. I also got to plug (a couple of times) acupuncture and my favorite chiropractic clinic in the whole world - Langford Chiropractic! Apparently, Dr. Rogers has been taking an acupuncture course and realized that Chinese medicine has treatments for narcolepsy, but discuss it as chronic fatigue syndrome. I shared my experiences as did others.
Once again, though, the best part of the meeting was chatting with others at the end of it. Two of my former students were there, and it was great to connect with Charlie again. I wrote a note to Dr. Rogers offering my assistance. Slowly, some people trickled out, but a group of us stayed until nearly 1 PM. Then, we decided to go get food together. We ate across the street and continued sharing stories and insights until nearly 3 PM. As I said earlier, I knew the day would exceed my expectations, but even in my wildest dreams, I never saw myself at lunch with five other narcoleptics (and one spouse and one baby). I only have to wait three weeks for the planning meeting. AND, it is only four weeks until the conference in Milwaukee. If lunch with five other narcoleptics is this cool, my brain reels with the possibilities of having a meal with two hundred narcoleptics.
I also feel great today because I know that I can help. I have no plans to try to do everything, but I certainly will be an asset and benefot myself and others. Just talking to the older woman and her husband today, I gave them some new ideas. I also provided some insights to another woman whose husband has narcolepsy. With school starting well and feeling managable, my wife getting her new job, and me working to stay balance, I am filled with joy at the potential for a good year ahead. I certainly know that my narcolepsy and fatigue will not go away, but I am more hopeful than ever that I can take each day as it comes and appreciate the upside, rather than dwelling on the mishaps.
Dr. Rogers opened the meeting with a plug for the Narcolepsy Network National Conference being held in Milwaukee, WI from October 3 to October 5. Since I am already registered to go, I brought my flier for it and was able to give it to a wonderful woman sitting next to me. She is now in her 80s, but didn't learn about her narcolepsy until she was 60. She spent most of her life battling this disease and didn't even know it. That is incredible. I was also thrilled to see that a number of the other MOONS folks are considering the conference or are already planning to go.
Dr. Rogers then made an earnest pitch for assistance. She and Charlie, the narcoleptic who has been helping her, know that they can't do this alone. In fact, both of them felt under prepared for this meeting simply because life in general can move too fast. I did find out that the "planning meeting" in July did happen. Dr. Rogers and one other person made it. Turns out I was in the right place, but either got there after they left or before they arrived. The good part is that lots of people are excited to help now. We do have a planning meeting scheduled for three weeks from now. I plan to go and brave shopping madness again. This time, I will work to arrive early and stay until someone shows up. We also set a new date for the next large group meeting. We didn't know it at the time, but we will listen in November to a group member speak about her life with narcolepsy and her pregnancy (that of course is the tabled speaker from today's meeting).
What got us "off track" was some incredible information from Dr. Rogers about tracking your own medical records. It is a good idea to have your own set no matter what your health is like, but it is imperative for people with chronic conditions. By doing so, you can catch errors and be able to clarify your condition for new doctors. Many of us had input as we moved through the material. I have kept my own records for the past four years, but I learned tons of new things to include. I also got to plug (a couple of times) acupuncture and my favorite chiropractic clinic in the whole world - Langford Chiropractic! Apparently, Dr. Rogers has been taking an acupuncture course and realized that Chinese medicine has treatments for narcolepsy, but discuss it as chronic fatigue syndrome. I shared my experiences as did others.
Once again, though, the best part of the meeting was chatting with others at the end of it. Two of my former students were there, and it was great to connect with Charlie again. I wrote a note to Dr. Rogers offering my assistance. Slowly, some people trickled out, but a group of us stayed until nearly 1 PM. Then, we decided to go get food together. We ate across the street and continued sharing stories and insights until nearly 3 PM. As I said earlier, I knew the day would exceed my expectations, but even in my wildest dreams, I never saw myself at lunch with five other narcoleptics (and one spouse and one baby). I only have to wait three weeks for the planning meeting. AND, it is only four weeks until the conference in Milwaukee. If lunch with five other narcoleptics is this cool, my brain reels with the possibilities of having a meal with two hundred narcoleptics.
I also feel great today because I know that I can help. I have no plans to try to do everything, but I certainly will be an asset and benefot myself and others. Just talking to the older woman and her husband today, I gave them some new ideas. I also provided some insights to another woman whose husband has narcolepsy. With school starting well and feeling managable, my wife getting her new job, and me working to stay balance, I am filled with joy at the potential for a good year ahead. I certainly know that my narcolepsy and fatigue will not go away, but I am more hopeful than ever that I can take each day as it comes and appreciate the upside, rather than dwelling on the mishaps.
Wednesday, August 13, 2008
Decent Doctoring
I have certainly railed here about my poor health care experiences. I also hope that I have acknowledged that I am lucky in many regards with my medical care. My therapist, psychiatrist, acupuncturist, chiropractor, massage therapist, otolaryngologist, and primary physician are all excellent. One thing that I did not feel completely confident about, though, was my pulmonary doctor - the person most responsible for treating my narcolepsy. I certainly knew that he had experience with narcoleptics, but the last time I saw him was in March. At that point I had not found any online support, had not been to MOONS, had not written anything on this blog, and (most importantly) had not started coping with this disease.
Since that appointment, I have learned a ton about myself. I also have learned a great deal about this condition. Reading the horror stories of other narcoleptics and beginning to recognize how infrequently even pulmonary doctors encounter narcolepsy, I began to wonder about my own care. My doctor seemed to be doing things right, but I still had my doubts. I felt so alone and unsure in March. I had no idea what to ask or what "normal" might be. Maybe, my doctor was simply humoring me and didn't have a good idea of how to treat me...
I have never been happier to admit that I was completely wrong to doubt him. I finally saw him again yesterday, and the appointment went extremely well. Certainly, I have much to continue to learn about how I am going to live with this condition, but we had a fantastic conversation. He clearly knows what is happening in terms of research and treatment. He is also wonderfully personable (which I have always enjoyed about him) and definitely cares about both my physical condition and my mental condition. It was comforting to leave his office firmly knowing that I have an excellent physician guiding me medically in this journey. The biggest thing for me was my decision, after talking to him, to try using "medication holidays." On weekends and longer school breaks, I will actually not take my stimulants when possible. By holding off at those times, I hope to increase the effectiveness of the stimulants during my work week. I am also hoping that it will keep me from needing to increase my doses as my condition progresses. It may not work, but at least it gives me something to attempt since I already feel like my stimulants are less effective than they were before.
My doctors can only make a partial difference in how I live with narcolepsy, but it sure feels wonderful to have sincere confidence in them. Doubt is often one of my worst enemies. It often rattles around in my brain causing me tremendous stress - usually highly unnecessary stress. Having this confidence allows me to focus my energy on settling into a good routine and adapting to the patterns of my day, rather than pondering whether I am on the right meds or at the correct dose. I am grateful for the decent doctors in my life!
Since that appointment, I have learned a ton about myself. I also have learned a great deal about this condition. Reading the horror stories of other narcoleptics and beginning to recognize how infrequently even pulmonary doctors encounter narcolepsy, I began to wonder about my own care. My doctor seemed to be doing things right, but I still had my doubts. I felt so alone and unsure in March. I had no idea what to ask or what "normal" might be. Maybe, my doctor was simply humoring me and didn't have a good idea of how to treat me...
I have never been happier to admit that I was completely wrong to doubt him. I finally saw him again yesterday, and the appointment went extremely well. Certainly, I have much to continue to learn about how I am going to live with this condition, but we had a fantastic conversation. He clearly knows what is happening in terms of research and treatment. He is also wonderfully personable (which I have always enjoyed about him) and definitely cares about both my physical condition and my mental condition. It was comforting to leave his office firmly knowing that I have an excellent physician guiding me medically in this journey. The biggest thing for me was my decision, after talking to him, to try using "medication holidays." On weekends and longer school breaks, I will actually not take my stimulants when possible. By holding off at those times, I hope to increase the effectiveness of the stimulants during my work week. I am also hoping that it will keep me from needing to increase my doses as my condition progresses. It may not work, but at least it gives me something to attempt since I already feel like my stimulants are less effective than they were before.
My doctors can only make a partial difference in how I live with narcolepsy, but it sure feels wonderful to have sincere confidence in them. Doubt is often one of my worst enemies. It often rattles around in my brain causing me tremendous stress - usually highly unnecessary stress. Having this confidence allows me to focus my energy on settling into a good routine and adapting to the patterns of my day, rather than pondering whether I am on the right meds or at the correct dose. I am grateful for the decent doctors in my life!
Tuesday, July 29, 2008
Doctor Discretion
At times I get extremely upset with my medical care and that of narcoleptics in general. While some of that frustration is justified, the reality is that most of my physicians have been outstanding. Honestly, only a handful of doctors in the world have a deep understanding of narcolepsy and its causes. In the last few years, the biggest breakthroughs ever have taken place with the discovery of orexin/hypocretin.
Yet even with all of that, I do think that doctors need to learn more about narcolepsy and other sleep disorders. While narcolepsy seems to only affect 1 person in 2500, there are still a number of undiagnosed narcoleptics out there. Far more unnerving are the many people with sleep apnea who are undiagnosed. The importance of sleep is massive and barely understood. Orexin/hypocretin, which is lacking in narcoleptics, was discovered while researching hunger issues. There also may be connections between narcolepsy and MS, Parkinson's, sinus issues and ADHD/ADD. The bottom line is that sleep is vital to our mental and physical health, and many people are going undiagnosed and unhelped.
Of course, in many ways, those of us in the U.S. are lucky. A friend in the U.K. wrote a great article for The Guardian. It came out today and details that massive numbers of people in the U.K. are going undiagnosed due to their health systems unwillingness to recognize these conditions. It is sad that so many people are being hurt because of a systemic problem. Of course, one could argue that the U.S. has a similar issue in the way that health insurance companies tend to control what doctors can and cannot do. Still, we don't seem to have quite the problem that Great Britain does.
I realize that narcolepsy and other sleep conditions are incredibly difficult to diagnose, but so many people are made to feel like hypocondriacs. Because narcolepsy is rare and the primary symptom is Excessive Daytime Sleepiness (a fancy way to say extreme fatigue), most doctors explore a multitude of issues before even considering narcolepsy. Worse, some doctors never explore narcolepsy! Unfortunately, even specialists who are the "experts" in narcolepsy sometimes don't have much practical experience treating the condition. As a result they (and certainly a vast number of general practicioners) miss some of the signs because they don't match the "textbook" descriptions of narcolpesy symptoms. And, because we are only now just beginning to understand narcolepsy, the disease is likely far more diverse than anyone suspects.
Yet even with all of that, I do think that doctors need to learn more about narcolepsy and other sleep disorders. While narcolepsy seems to only affect 1 person in 2500, there are still a number of undiagnosed narcoleptics out there. Far more unnerving are the many people with sleep apnea who are undiagnosed. The importance of sleep is massive and barely understood. Orexin/hypocretin, which is lacking in narcoleptics, was discovered while researching hunger issues. There also may be connections between narcolepsy and MS, Parkinson's, sinus issues and ADHD/ADD. The bottom line is that sleep is vital to our mental and physical health, and many people are going undiagnosed and unhelped.
Of course, in many ways, those of us in the U.S. are lucky. A friend in the U.K. wrote a great article for The Guardian. It came out today and details that massive numbers of people in the U.K. are going undiagnosed due to their health systems unwillingness to recognize these conditions. It is sad that so many people are being hurt because of a systemic problem. Of course, one could argue that the U.S. has a similar issue in the way that health insurance companies tend to control what doctors can and cannot do. Still, we don't seem to have quite the problem that Great Britain does.
I realize that narcolepsy and other sleep conditions are incredibly difficult to diagnose, but so many people are made to feel like hypocondriacs. Because narcolepsy is rare and the primary symptom is Excessive Daytime Sleepiness (a fancy way to say extreme fatigue), most doctors explore a multitude of issues before even considering narcolepsy. Worse, some doctors never explore narcolepsy! Unfortunately, even specialists who are the "experts" in narcolepsy sometimes don't have much practical experience treating the condition. As a result they (and certainly a vast number of general practicioners) miss some of the signs because they don't match the "textbook" descriptions of narcolpesy symptoms. And, because we are only now just beginning to understand narcolepsy, the disease is likely far more diverse than anyone suspects.
Tuesday, July 1, 2008
Helping Hands
Today, July 1, felt like my first day of summer. Not only was the mercury climbing into that uncomfortable range of high 80s (I may be Minnesotan, but uncomfortable heat can't be anything less than 88 degree - unlike many Minnesotans who balk at 80), but also I actually had a fairly relaxed day. Granted, I still had WAY too much on my internal check list (of which only a couple of items got ticked), but I did things for me today. I did that and still spent time with my daughter, provided support for my wife and even had lunch with a dear friend. Days like this make me remember that the concept of "balance" is not just a concept. It actually happens some days - I can NEVER count on it taking place, but everybody has good luck some time.
The aspect of today that grounded it so well was more time at Langford Chiropractic. I know that I rave about them often, but the entire staff is a huge piece of my coping. I continue to utilize the tremendous skills of my acupuncturist. In fact I saw her on Monday - that would be the 15 minute late appointment. She not only managed to get me in, but she also got me out on time. I'm late, but still got the full treatment and left with my day back on track. The best thing is that my acupuncturist managed to hit perfect spots for my high stress and low energy.
Today, I received equally impressive treatment from my massage therapist and my chiropractor. As I have written before, my muscles live in a constant state of tension. They have always been this way, but I know that my stimulants have made them much worse. Because of that I have an ocean of sympathy for my massage therapist. Incredibly, she is usually able to get most of my muscles to release. More impressively, she does that without "hurting" me. Do I experience pain? Of course, but even when she is working on the worst muscles, I know that the pressure she applies will allow the muscle to heal. Her strength is phenomenal. I was particularly worried today, though, because I wondered if we would ever move past my face. The two weeks of MITY took such a toll on me that even my jaw muscles were still clenched. Eventually, the massage progressed to my shoulders. Again, I wondered if my neck and shoulders would consume the rest of my hour. Fortunately, she did what she could (and it was fantastic improvement) and then worked on my back. She had actually joked that she would spend time "chiseling at it." Sadly, that is usually the case. I am blessed that she can do so much to remove tons of toxins from my muscles. I certainly left the room in a vastly improved state.
My chiropractor also managed to make exponential improves in my physical state. She is one of the clinic's owners and has amazing insights into how to improve someone's health. We often joke about the state of my back, especially because she knows that my massage therapist is unbelievable strong. Even my chiropractor was stunned today by how tight everything remained. Still, she worked out quite a few subluxations, even one in my neck that I didn't think she would get. Perhaps the best thing, though, is that I know she cares about my health, particularly in ways that only a handful of physicians have shown me. I realize that managed care limits what MDs can do, but I usually spend less time with my chiropractor than I do with them. Again, I often leave Langford Chiropractic grateful to have such excellent care providers.
Even the office staff brightens my day on a consistent basis. Since I am there every other week, most of the desk and financial staff know me. I am always greeted with a smile and am often asked about my daughter and my day. The entire clinic honestly feels like home. I know all of that is important to me because it is hard for me to ask for help. Without that comfort, I might not be getting acupuncture every other week and using massage and chiropractic work done every three to four weeks. Those three things likely do more for my "balance" than anything else in my life. They are the primary way that I am good to me.
Taking care of myself needs to remain a top priority. I wrote yesterday of prioritizing my life. My psyche is not good at acknowledging this, but I need to be my top priority. I am not good to even my wife and daughter if I am not emotionally and psychologically healthy. Certainly, I will continue to be as physically healthy as I can be too, but that situation is stacked against me. These non-Western approaches are fantastic tools in my maintenance of me. I must begin to reconnect with yoga (and exercise) because it bookends the acupuncture beautifully. When I was doing yoga and acupuncture together, my energy and spirit both reached wonderful heights. Until then, I will continue my trek to the Highland Park neighbor in Saint Paul to visit my favorite medical clinic!
The aspect of today that grounded it so well was more time at Langford Chiropractic. I know that I rave about them often, but the entire staff is a huge piece of my coping. I continue to utilize the tremendous skills of my acupuncturist. In fact I saw her on Monday - that would be the 15 minute late appointment. She not only managed to get me in, but she also got me out on time. I'm late, but still got the full treatment and left with my day back on track. The best thing is that my acupuncturist managed to hit perfect spots for my high stress and low energy.
Today, I received equally impressive treatment from my massage therapist and my chiropractor. As I have written before, my muscles live in a constant state of tension. They have always been this way, but I know that my stimulants have made them much worse. Because of that I have an ocean of sympathy for my massage therapist. Incredibly, she is usually able to get most of my muscles to release. More impressively, she does that without "hurting" me. Do I experience pain? Of course, but even when she is working on the worst muscles, I know that the pressure she applies will allow the muscle to heal. Her strength is phenomenal. I was particularly worried today, though, because I wondered if we would ever move past my face. The two weeks of MITY took such a toll on me that even my jaw muscles were still clenched. Eventually, the massage progressed to my shoulders. Again, I wondered if my neck and shoulders would consume the rest of my hour. Fortunately, she did what she could (and it was fantastic improvement) and then worked on my back. She had actually joked that she would spend time "chiseling at it." Sadly, that is usually the case. I am blessed that she can do so much to remove tons of toxins from my muscles. I certainly left the room in a vastly improved state.
My chiropractor also managed to make exponential improves in my physical state. She is one of the clinic's owners and has amazing insights into how to improve someone's health. We often joke about the state of my back, especially because she knows that my massage therapist is unbelievable strong. Even my chiropractor was stunned today by how tight everything remained. Still, she worked out quite a few subluxations, even one in my neck that I didn't think she would get. Perhaps the best thing, though, is that I know she cares about my health, particularly in ways that only a handful of physicians have shown me. I realize that managed care limits what MDs can do, but I usually spend less time with my chiropractor than I do with them. Again, I often leave Langford Chiropractic grateful to have such excellent care providers.
Even the office staff brightens my day on a consistent basis. Since I am there every other week, most of the desk and financial staff know me. I am always greeted with a smile and am often asked about my daughter and my day. The entire clinic honestly feels like home. I know all of that is important to me because it is hard for me to ask for help. Without that comfort, I might not be getting acupuncture every other week and using massage and chiropractic work done every three to four weeks. Those three things likely do more for my "balance" than anything else in my life. They are the primary way that I am good to me.
Taking care of myself needs to remain a top priority. I wrote yesterday of prioritizing my life. My psyche is not good at acknowledging this, but I need to be my top priority. I am not good to even my wife and daughter if I am not emotionally and psychologically healthy. Certainly, I will continue to be as physically healthy as I can be too, but that situation is stacked against me. These non-Western approaches are fantastic tools in my maintenance of me. I must begin to reconnect with yoga (and exercise) because it bookends the acupuncture beautifully. When I was doing yoga and acupuncture together, my energy and spirit both reached wonderful heights. Until then, I will continue my trek to the Highland Park neighbor in Saint Paul to visit my favorite medical clinic!
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, May 19, 2008
Just Another Wacky Day
I had thought my next blog would be about the amazing experience of being in my men's group. I also considered a blog entry on the importance of therapy. A third topic choice was the vitality of friendship and its importance in my life. Nowhere in my planned list of entries was "completely insane day centered on your wife's health issues." And yet, here we are!
My wife is amazing. She truly stuns me on a daily basis. Not only does she manage to love me unconditionally, even with the gloom of narcolepsy hanging over me, but also she daily proves that nothing rivals the affection of a mother for her child. Our daughter goes non-stop and taxes both my and my wife's reserves. Since I don't have much, my wife bears the brunt of the parenting, and virtually every other home life responsibility. Rather than becoming feed up with our child, my wife's enthusiasm for our not so little girl grows with each challenge and demand. It is astounding.
Beyond that, the love of my life is also a phenomenal editor and writer. Her work at the University of Minnesota Medical School has already garnered her a tremendous reputation. Recently, she facilitated a four session workshop on grant writing. Every week she had 50 doctors and researchers engaged for an hour and a half - about writing! She is even better one-on-one and rarely does someone walk away dissatisfied from working with her. Her professionalism and dedication are the stuff of legend among her peers.
Given all of that, it is unbelievable that we spent the afternoon running around dealing with her health issues rather than mine. She is the strong one; I am the ill one. Yet, she has been struggling for weeks with fatigue and stress issues. We have even discussed the possibility that she might have a sleep disorder. Talk about irony! Today, though, went well beyond speculation. Periodically, my wife has had severe abdominal pain. The working theory has been that she experiences ovarian cysts in those episodes. She had a situation last week and even got to discuss it with her other concerns during an appointment with her nurse practitioner. They did a number of tests, and many have already come back normal.
Then, today, my wife called me right before Noon. I was in the middle of class and could not call her until the class ended. When we finally had the chance to talk, she told me that she was experiencing the pain again and was unsure if she could drive. She did manage to get home. I then headed home to get her and brought her to her clinic. After getting our daughter at school and canceling my own appointment, we returned to the clinic to find my wife still waiting and in pain. She finally headed back and was there for an hour. An X-Ray showed nothing significant, and my wife got some Mira-lax in hopes that would help. We still needed to get her to the hospital, though, for a pelvic ultrasound. We don't have those results yet, but my wife is convinced they will be normal too.
She headed to bed as soon as we got home. I must admit that I am scared. My wife's dad has had some major health issues - surviving colon cancer, sleep apnea, type II diabetes. At one level I am sure that she is fine, but it also frightens me that someone as tough and driven as my wife could be incapacitated in this way. The reality is that NOTHING has ever slowed her down when she needs to get things done. But, whatever this is, it has stopped her in her tracks. It is also eating at her that she feels so limited. The quirk is that she keeps checking with me to make sure that I don't think she is being lazy. It is almost laughable that she would feel that way. For seven years, I have barely been able to function due to mysterious and strange health issues, yet she worries that I will think she is weak after a day of pain. Of course, I am complete empathy. Unknown medical problems are horribly frustrating. My own issues have (and sometimes still do) driven me bonkers. Given the way our culture treats illness, it is no wonder that most of us beat ourselves up for getting sick. Being a drain is bad, thus we must be bad if we are sick. How warped is that thinking? Yet, we all do it.
I desperately hope that nothing is seriously wrong with my wife. I don't know how we will weather the reality of two limited adults in this house. But, if something is deeply wrong, I honestly hope we can find it soon so my wife does not have to face the medical nightmare that I experienced, moving from specialist to specialist, never getting a clear answer. The most irrational moments that I have are the ones where I convince myself that I have somehow given my wife this illness. So many of her symptoms mirror my early ones. Of course, that could just be me making myself the center of attention, rather than providing my wife the attention and care that she deserves. Please keep her and our whole family in your thoughts. Thanks!
My wife is amazing. She truly stuns me on a daily basis. Not only does she manage to love me unconditionally, even with the gloom of narcolepsy hanging over me, but also she daily proves that nothing rivals the affection of a mother for her child. Our daughter goes non-stop and taxes both my and my wife's reserves. Since I don't have much, my wife bears the brunt of the parenting, and virtually every other home life responsibility. Rather than becoming feed up with our child, my wife's enthusiasm for our not so little girl grows with each challenge and demand. It is astounding.
Beyond that, the love of my life is also a phenomenal editor and writer. Her work at the University of Minnesota Medical School has already garnered her a tremendous reputation. Recently, she facilitated a four session workshop on grant writing. Every week she had 50 doctors and researchers engaged for an hour and a half - about writing! She is even better one-on-one and rarely does someone walk away dissatisfied from working with her. Her professionalism and dedication are the stuff of legend among her peers.
Given all of that, it is unbelievable that we spent the afternoon running around dealing with her health issues rather than mine. She is the strong one; I am the ill one. Yet, she has been struggling for weeks with fatigue and stress issues. We have even discussed the possibility that she might have a sleep disorder. Talk about irony! Today, though, went well beyond speculation. Periodically, my wife has had severe abdominal pain. The working theory has been that she experiences ovarian cysts in those episodes. She had a situation last week and even got to discuss it with her other concerns during an appointment with her nurse practitioner. They did a number of tests, and many have already come back normal.
Then, today, my wife called me right before Noon. I was in the middle of class and could not call her until the class ended. When we finally had the chance to talk, she told me that she was experiencing the pain again and was unsure if she could drive. She did manage to get home. I then headed home to get her and brought her to her clinic. After getting our daughter at school and canceling my own appointment, we returned to the clinic to find my wife still waiting and in pain. She finally headed back and was there for an hour. An X-Ray showed nothing significant, and my wife got some Mira-lax in hopes that would help. We still needed to get her to the hospital, though, for a pelvic ultrasound. We don't have those results yet, but my wife is convinced they will be normal too.
She headed to bed as soon as we got home. I must admit that I am scared. My wife's dad has had some major health issues - surviving colon cancer, sleep apnea, type II diabetes. At one level I am sure that she is fine, but it also frightens me that someone as tough and driven as my wife could be incapacitated in this way. The reality is that NOTHING has ever slowed her down when she needs to get things done. But, whatever this is, it has stopped her in her tracks. It is also eating at her that she feels so limited. The quirk is that she keeps checking with me to make sure that I don't think she is being lazy. It is almost laughable that she would feel that way. For seven years, I have barely been able to function due to mysterious and strange health issues, yet she worries that I will think she is weak after a day of pain. Of course, I am complete empathy. Unknown medical problems are horribly frustrating. My own issues have (and sometimes still do) driven me bonkers. Given the way our culture treats illness, it is no wonder that most of us beat ourselves up for getting sick. Being a drain is bad, thus we must be bad if we are sick. How warped is that thinking? Yet, we all do it.
I desperately hope that nothing is seriously wrong with my wife. I don't know how we will weather the reality of two limited adults in this house. But, if something is deeply wrong, I honestly hope we can find it soon so my wife does not have to face the medical nightmare that I experienced, moving from specialist to specialist, never getting a clear answer. The most irrational moments that I have are the ones where I convince myself that I have somehow given my wife this illness. So many of her symptoms mirror my early ones. Of course, that could just be me making myself the center of attention, rather than providing my wife the attention and care that she deserves. Please keep her and our whole family in your thoughts. Thanks!
Monday, May 5, 2008
Needles are My Friend
Every other Monday, my heart skips a beat. No, not another health woe. Instead, it is excitement. I spend 30 minutes on those Mondays appreciating ancient wisdom. The friendly needles provide me relief, relaxation, energy and peace - all a result of trusting my acupuncturist. I started using acupuncture in March of 2005. That was one of my lowest points in this journey. I had started the 2004-2005 school year with my energy of old, but that quickly evaporated and took my hope with it. By December I was missing a least a day a week, often two. When my principal called me in and told me, "we had a problem," I knew something was horribly wrong. Wisely, I chose to take a medical leave of absence. It was during that trimester of not working that I finally began to dig into my mental attitude around all of this. Given that I am still on that journey, the process remains slow, but the time off gave me the place to start.
The best two discovers that I made during my leave were yoga's impact on me and the power of acupuncture. In combination I found places of peace and fulfillment within myself that astonished me. The yoga lasted until the next fall when my stress of the school day and my undiagnosed narcolepsy eventually led me to forgo attempting it. I have yet to re-establish a routine for it, but it is a top priority goal as I work towards building a healthy schedule and structure for my life. The acupuncture disappeared more quickly in 2005. The problem is that it worked.
I began by seeing my acupuncturist twice a week. She had energy moving within my body almost immediately. I distinctly remember feeling currents running amid the needles as she inserted them. With each new needle, the energy had more room to play. By the time she left the room, I could feel energy ready to burst from me as laughter. It was incredible. Soon, though, she realized that I needed an herbalist's touch too. She sent me to another practitioner within her clinic. His approach was to treat my back, rather than my front. Although the experience no longer felt the same - no more lightning races within my body - the results were even more drastic. As we moved into summer, my energy remained strong and my sinuses were the best they had been in years. I know it was a combination of his herbal teas and precise needle placement, but I was thrilled to go to acupuncture each week.
I started teaching again that summer, which provided a wonderful "test." Due to the hours of the summer program, I couldn't get acupuncture for two weeks. I missed it, but I still felt strong at the end. My practitioner and I were both thrilled. We stretched the next appointment out three weeks and saw similar improvement. We both thought a month would be the best test of all. He made me a huge batch of my herbal tea, and we scheduled an appointment to hit the window of time between a major family trip and my school trip to Scotland. We also thought that the idea of once a month would be perfect for the school year.
Then, the bottom fell out of everything. On my family trip, I caught a cold making my sinuses a mess. My ENT actually put me on an antibiotic when I returned to Minnesota. The bigger blow came in a letter from my health care provider. Apparently, acupuncture was only covered for twelve visits TOTAL (as in your lifetime), unless you needed more to get "better." Since I had improved, I was obviously better and would not be able to have my visits covered any more. The letter also clearly stated that "maintenance treatments are not a covered item." While it was not the first, nor the last, disappointment in my medical odyssey, it made no sense to me. I was going to an acupuncturist that cost a fraction of a doctor visit, not to mention the antibiotic costs that would come with more sinus infections, but I couldn't see him any more because I was better and maintenance treatment is not covered (even when it saves money). Brilliant!
I considered trying to appeal, but the bureaucratic nightmare proved too daunting. Plus, I was leave soon for Scotland, and the depression this setback trigged sapped even more energy. As a result, I didn't see another acupuncturist until last fall. In my mind I always knew I needed it, but we switched medical plans in January of 2006. I decided to trust my new primary doctor and let him look for the roots of all of my medical issues. I certainly don't regret that, but I kept putting off the acupuncture because I didn't want to introduce a new variable into the bizarreness of my health. Finally last spring, I made the decision that I was done playing games with Western medicine and resolved to figure out how to get acupuncture again. I also knew that massage and chiropractic care would assist me.
Of course, I didn't stop dancing with Western medicine, but that's okay because we finally figured out the narcolepsy. Proudly, though, I didn't give up on finding an acupuncturist either. I started at my chiropractic clinic (Langford Chiropractic in Saint Paul, MN) in July of 2007. What an amazing place! My massage therapist is amazing, and my chiropractor specializes in sports medicine. Both are incredible at what they do. The other big draw for me, though, was that all three chiropractors were working on their acupuncture licenses. Once they had those, my health care provider would possibly pay for my treatments. As pleased as I was with my other services at Langford, though, I decided not to wait for the chiropractors to get their credentials done. My wife and I agreed that I should simply start acupuncture in September.
Immediately, I knew I had found the right person. My acupuncturist clearly works to understand who I am and treat every aspect of my condition. She sees what is happening with me in a far more holistic way, taking a genuine interest in everything that is happening with me. Once again, I know that I am starting to heal in many ways due to the wisdom of an ancient culture. Needles placed in key spots make a massive difference for me. The other amazing aspect of my treatment is the use of electricity to stimulate key needles. Today was tremendous. The electrodes were placed on needles in my legs, and I could still feel their impact as I drove home. While both my sinuses and my narcolepsy benefit the most from acupuncture, it also has had a major impact on my knees getting stronger and keeping my dyshidrotic eczema in check. I wound up being treated once a week for much of the end of 2007, but we had to cutback to every other week due to financial constraints. I may get to increase my treatments again, though, because Langford Chiropractic tried billing my provider for the acupuncture. It is being covered now that the doctors have their official acupuncture documentation.
I honestly relish the hour I get to spend in acupuncture every other Monday. While the idea of using needles to treat pain and illness unnerves many of us in the West, we need to remember that this approach predates ALL of our own medical practices. The techniques have worked for thousands of years. I hope more people do try it. I had physical therapy today, and my therapist balked at the idea of having needles put in him. He worried that his own phobia about needles would eliminate any benefit the acupuncture would bring. I can't say, but I do know that even when I do open my eyes and see some needles in front of my eyes, I barely even register them. I am too relaxed and centered to let anything bother me. Obviously, I write this blog for me, but if you have happened upon it because you are narcoleptic or are suffering in some way, I hope you will consider acupuncture. It is the BEST medicine I have encounter in my long and tortuous (not torturous, although it has felt that way too) journey.
The best two discovers that I made during my leave were yoga's impact on me and the power of acupuncture. In combination I found places of peace and fulfillment within myself that astonished me. The yoga lasted until the next fall when my stress of the school day and my undiagnosed narcolepsy eventually led me to forgo attempting it. I have yet to re-establish a routine for it, but it is a top priority goal as I work towards building a healthy schedule and structure for my life. The acupuncture disappeared more quickly in 2005. The problem is that it worked.
I began by seeing my acupuncturist twice a week. She had energy moving within my body almost immediately. I distinctly remember feeling currents running amid the needles as she inserted them. With each new needle, the energy had more room to play. By the time she left the room, I could feel energy ready to burst from me as laughter. It was incredible. Soon, though, she realized that I needed an herbalist's touch too. She sent me to another practitioner within her clinic. His approach was to treat my back, rather than my front. Although the experience no longer felt the same - no more lightning races within my body - the results were even more drastic. As we moved into summer, my energy remained strong and my sinuses were the best they had been in years. I know it was a combination of his herbal teas and precise needle placement, but I was thrilled to go to acupuncture each week.
I started teaching again that summer, which provided a wonderful "test." Due to the hours of the summer program, I couldn't get acupuncture for two weeks. I missed it, but I still felt strong at the end. My practitioner and I were both thrilled. We stretched the next appointment out three weeks and saw similar improvement. We both thought a month would be the best test of all. He made me a huge batch of my herbal tea, and we scheduled an appointment to hit the window of time between a major family trip and my school trip to Scotland. We also thought that the idea of once a month would be perfect for the school year.
Then, the bottom fell out of everything. On my family trip, I caught a cold making my sinuses a mess. My ENT actually put me on an antibiotic when I returned to Minnesota. The bigger blow came in a letter from my health care provider. Apparently, acupuncture was only covered for twelve visits TOTAL (as in your lifetime), unless you needed more to get "better." Since I had improved, I was obviously better and would not be able to have my visits covered any more. The letter also clearly stated that "maintenance treatments are not a covered item." While it was not the first, nor the last, disappointment in my medical odyssey, it made no sense to me. I was going to an acupuncturist that cost a fraction of a doctor visit, not to mention the antibiotic costs that would come with more sinus infections, but I couldn't see him any more because I was better and maintenance treatment is not covered (even when it saves money). Brilliant!
I considered trying to appeal, but the bureaucratic nightmare proved too daunting. Plus, I was leave soon for Scotland, and the depression this setback trigged sapped even more energy. As a result, I didn't see another acupuncturist until last fall. In my mind I always knew I needed it, but we switched medical plans in January of 2006. I decided to trust my new primary doctor and let him look for the roots of all of my medical issues. I certainly don't regret that, but I kept putting off the acupuncture because I didn't want to introduce a new variable into the bizarreness of my health. Finally last spring, I made the decision that I was done playing games with Western medicine and resolved to figure out how to get acupuncture again. I also knew that massage and chiropractic care would assist me.
Of course, I didn't stop dancing with Western medicine, but that's okay because we finally figured out the narcolepsy. Proudly, though, I didn't give up on finding an acupuncturist either. I started at my chiropractic clinic (Langford Chiropractic in Saint Paul, MN) in July of 2007. What an amazing place! My massage therapist is amazing, and my chiropractor specializes in sports medicine. Both are incredible at what they do. The other big draw for me, though, was that all three chiropractors were working on their acupuncture licenses. Once they had those, my health care provider would possibly pay for my treatments. As pleased as I was with my other services at Langford, though, I decided not to wait for the chiropractors to get their credentials done. My wife and I agreed that I should simply start acupuncture in September.
Immediately, I knew I had found the right person. My acupuncturist clearly works to understand who I am and treat every aspect of my condition. She sees what is happening with me in a far more holistic way, taking a genuine interest in everything that is happening with me. Once again, I know that I am starting to heal in many ways due to the wisdom of an ancient culture. Needles placed in key spots make a massive difference for me. The other amazing aspect of my treatment is the use of electricity to stimulate key needles. Today was tremendous. The electrodes were placed on needles in my legs, and I could still feel their impact as I drove home. While both my sinuses and my narcolepsy benefit the most from acupuncture, it also has had a major impact on my knees getting stronger and keeping my dyshidrotic eczema in check. I wound up being treated once a week for much of the end of 2007, but we had to cutback to every other week due to financial constraints. I may get to increase my treatments again, though, because Langford Chiropractic tried billing my provider for the acupuncture. It is being covered now that the doctors have their official acupuncture documentation.
I honestly relish the hour I get to spend in acupuncture every other Monday. While the idea of using needles to treat pain and illness unnerves many of us in the West, we need to remember that this approach predates ALL of our own medical practices. The techniques have worked for thousands of years. I hope more people do try it. I had physical therapy today, and my therapist balked at the idea of having needles put in him. He worried that his own phobia about needles would eliminate any benefit the acupuncture would bring. I can't say, but I do know that even when I do open my eyes and see some needles in front of my eyes, I barely even register them. I am too relaxed and centered to let anything bother me. Obviously, I write this blog for me, but if you have happened upon it because you are narcoleptic or are suffering in some way, I hope you will consider acupuncture. It is the BEST medicine I have encounter in my long and tortuous (not torturous, although it has felt that way too) journey.
Monday, April 28, 2008
Not a Good Day
I knew that today was going to be stressful. My daughter was sick yesterday, so I knew she might still be ill today. Last week, I missed a day of school and lost a DVD, resulting in my course schedule getting off track. Best of all, I had an appointment with a specialist, a dermatologist, and I rarely have "good" experiences with specialists. Hope springs eternal, though, so I woke thinking the day might be fine.
The first clue should have been waking up at 4:15 AM. I had no recollection of taking my second dose of medicine at 1 AM, but I must have since the vial was empty. I have slept through that dose quite a few times, but I have NEVER forgotten it whe nI have taken it. But being a bit groggy was only a small issue, or so I thought. The next clue was realizing at 5:45 AM that my daughter was not getting out of her bed, even with her horrid Roger Rabbit alarm blaring next to her head. My wife did get her "up," but our daughter promptly crashed into our bed. At 6:20, the bleary eyed eleven year old did get out of bed. She even made it into school clothes and ate breakfast, but when she returned to our bedroom at 6:45, I knew she was doomed. Between the congested nasal speech and the washed out eyes, my daughter sounded and looked horrid. I told her to get under the covers for 15 minutes; we would decide after she rested more. She immediately fell asleep. I made the call at 7:05 AM - no school for her! Of course, I still needed to go to my school...
My daughter did try to watch some television, but once again fell asleep. She eventually got back in bed and slept from 7:30 until 9:15. I edited my assignment sheets for my film study class, knowing that I only had 8 minutes in each class to explain the assignments, introduce Rear Window, and get the film started. Of course, now I would be doing it with my sick daughter in the room. As my frenzy increased, I kept remembering "one more thing" I had forgotten for my dermatology appointment. After the FIFTH one, I simply stopped to breathe for a few minutes. Somehow, I got together what I needed and got my assignments sheets set for school. I got my daughter awake, and I even remembered all of my bags for school. I was sure I had seen the worst of my day, until I got to school.
We arrived, and I had 15 minutes to make my copies. But, I had carried into school ALL of my meds (one of the many things I had remembered to pull together for the doctor). Unfortunately, some of my meds should NEVER be brought into a school. So, I ran them back to the car. I did manage to get the copies made, but had to rush to my classroom and quickly cut one of the handouts in half. In a mad whirlwind I passed out the sheets, introduced the film, explained the assignments and started the movie at the right time. Then, I had to get to work on the information I still needed for the doctor. While my next class was a tad calmer, the last one started even more chaotically than the first. I, again, got to the room just before the bell. I also had many students straggle in late. And, that class is my chatty one. Somehow, it all worked, but I still had a ton to do for the doctor. In fact I had so much that my plan to leave the building by 2 PM at the latest completely fell apart. I had hoped to arrive at the appointment early, in an effort to get my daughter home as soon as possible. Instead, we finally made it to the car at 2:50 - with the appointment looming at 3 PM.
We got into the office by 3; we might have even had a minute to spare. But, the line kept me from checking in until 3:10. I then sat for the next 35 minutes. I know how doctor's offices work. Sometimes everything clips along, other times everything bogs down. Unfortunately, it seemed that I was the only one on hold. MANY people who arrived after me got to see their dermatologists while I got to wait. Still, I had faith. Mine just took extra time with patients; she simply chose to be overly thorough.
The whole reason I was seeing a dermatologist was dyshidrotic eczema. It is this incredibly annoying condition which features tiny flat blisters on your hands (and sometimes your feet). They are hard to even notice, but they secrete a fluid that irritates the skin. It feels like having an allergic reaction to your own sweat. Weird, and a total pain. Mine started in January. I have been using a topical steroid cream on it, but you should only use that for a couple months. Plus, the cream usually clears it up. Obviously, I'm special. The other reason for the visit is that in the last month I have had an explosion of acne on my forehead and temples.
So, I finally get called into the doctor at 3:45. The nurse quickly confirms why I am there. She focuses on the acne, but I remind her about the dyshidrosis. The doctor enters within minutes. She too focuses on the acne. She also discusses my feet and their sweating. Now, I did tell her and the nurse that I initially seemed to have the dyshidrosis on both my hands and my feet, but the hands were the worst part. Finally, she looked at my hands. She commented that they didn't look too bad considering I hadn't used the steroid cream for a week. In the end she wrote three prescriptions - 2 for the acne and 1 for my feet. For the dyshidrosis, she told me to use the steroid cream "since there is not much that can be done for it and it tends to be chronic." Now, I had expected that, but I had hoped for a bit more exploration as to WHY this was happening. I even prompted her by asking if the stimulants could be amplifying the dyshidrosis. She had no idea, but thought the possibility was intriguing. My daughter and I were back in the car by 3:56.
So, I sat in a doctor's office for 45 minutes, after spending a majority of my day compiling information for the appointment, to see the nurse and the doctor for approximately 10-15 minutes. Now, I know that even specialists are on the clock these days, but this was ridiculous. I developed dyshidrosis at the age of 39 and a half, and after almost 4 months of treating it, I still have active issues with it. I also have suddenly developed significant acne. Shouldn't we explore that a bit? Did she even have time to glance at any of the information or history that I provided? I doubt it. She kindly told me to call her if things did not get better. I certainly will. Perhaps, I am completely crazy. Maybe, things will get better within a month or two. I hope so, but I doubt it.
I know this is not her fault. I am sure that she is a great doctor. Sadly, we only see the brokenness in the system when we are stuck in it. How could the dermatologist have any idea how bizarre my last seven years have been? How could she know that I have been positive on a mono spot test four times, with two of those coinciding with skin issues? Was much of it in the material I gave her? Yes. Could she have possibly have read it all? Never. She wouldn't have had time to read it all even if I had given it to her a week ago. Why? She is likely scheduled to see 5-6 patients every hour. I don't "fit" into any box. Actually, I fit PERFECTLY into the dyshidrotic eczema box, but since no one knows how or why that condition develops, it is one more place to treat the systems - just like narcolepsy, and irritable bowel syndrome, and my type of chronic sinusitis. Maybe I am crazy, or maybe I am making myself sick.
All I know is that I am tired of going to doctors. I will still go, but I am far less vested in what any doctor has to say. That is good. A year ago, I think an appointment like today would have put me into a funk for days. Today, I am simply angry. I know that my dermatologist did the best she could; it is just that her best (or likely anyone's) was pathetic, but that is a result of medicine functioning as a business rather than as a vocation. She needs to see those 5-6 patients every hour so she can receive an appropriate salary, and the practice can still be profitable.
I am so glad to know that my acupuncture helps with the dyshidrosis too. I also know that I am the one who will make the biggest difference in any change in my physical and mental state. I can't control my narcolepsy, or my dyshidrotic eczema, or any of my other goofy medical conditions. What I can do is continue to work for balance. I will continue to have days like this one. Rather than rail against them, I can accept them and know that tomorrow will come with its challenges and joys. There is always another moment, another chance.
The first clue should have been waking up at 4:15 AM. I had no recollection of taking my second dose of medicine at 1 AM, but I must have since the vial was empty. I have slept through that dose quite a few times, but I have NEVER forgotten it whe nI have taken it. But being a bit groggy was only a small issue, or so I thought. The next clue was realizing at 5:45 AM that my daughter was not getting out of her bed, even with her horrid Roger Rabbit alarm blaring next to her head. My wife did get her "up," but our daughter promptly crashed into our bed. At 6:20, the bleary eyed eleven year old did get out of bed. She even made it into school clothes and ate breakfast, but when she returned to our bedroom at 6:45, I knew she was doomed. Between the congested nasal speech and the washed out eyes, my daughter sounded and looked horrid. I told her to get under the covers for 15 minutes; we would decide after she rested more. She immediately fell asleep. I made the call at 7:05 AM - no school for her! Of course, I still needed to go to my school...
My daughter did try to watch some television, but once again fell asleep. She eventually got back in bed and slept from 7:30 until 9:15. I edited my assignment sheets for my film study class, knowing that I only had 8 minutes in each class to explain the assignments, introduce Rear Window, and get the film started. Of course, now I would be doing it with my sick daughter in the room. As my frenzy increased, I kept remembering "one more thing" I had forgotten for my dermatology appointment. After the FIFTH one, I simply stopped to breathe for a few minutes. Somehow, I got together what I needed and got my assignments sheets set for school. I got my daughter awake, and I even remembered all of my bags for school. I was sure I had seen the worst of my day, until I got to school.
We arrived, and I had 15 minutes to make my copies. But, I had carried into school ALL of my meds (one of the many things I had remembered to pull together for the doctor). Unfortunately, some of my meds should NEVER be brought into a school. So, I ran them back to the car. I did manage to get the copies made, but had to rush to my classroom and quickly cut one of the handouts in half. In a mad whirlwind I passed out the sheets, introduced the film, explained the assignments and started the movie at the right time. Then, I had to get to work on the information I still needed for the doctor. While my next class was a tad calmer, the last one started even more chaotically than the first. I, again, got to the room just before the bell. I also had many students straggle in late. And, that class is my chatty one. Somehow, it all worked, but I still had a ton to do for the doctor. In fact I had so much that my plan to leave the building by 2 PM at the latest completely fell apart. I had hoped to arrive at the appointment early, in an effort to get my daughter home as soon as possible. Instead, we finally made it to the car at 2:50 - with the appointment looming at 3 PM.
We got into the office by 3; we might have even had a minute to spare. But, the line kept me from checking in until 3:10. I then sat for the next 35 minutes. I know how doctor's offices work. Sometimes everything clips along, other times everything bogs down. Unfortunately, it seemed that I was the only one on hold. MANY people who arrived after me got to see their dermatologists while I got to wait. Still, I had faith. Mine just took extra time with patients; she simply chose to be overly thorough.
The whole reason I was seeing a dermatologist was dyshidrotic eczema. It is this incredibly annoying condition which features tiny flat blisters on your hands (and sometimes your feet). They are hard to even notice, but they secrete a fluid that irritates the skin. It feels like having an allergic reaction to your own sweat. Weird, and a total pain. Mine started in January. I have been using a topical steroid cream on it, but you should only use that for a couple months. Plus, the cream usually clears it up. Obviously, I'm special. The other reason for the visit is that in the last month I have had an explosion of acne on my forehead and temples.
So, I finally get called into the doctor at 3:45. The nurse quickly confirms why I am there. She focuses on the acne, but I remind her about the dyshidrosis. The doctor enters within minutes. She too focuses on the acne. She also discusses my feet and their sweating. Now, I did tell her and the nurse that I initially seemed to have the dyshidrosis on both my hands and my feet, but the hands were the worst part. Finally, she looked at my hands. She commented that they didn't look too bad considering I hadn't used the steroid cream for a week. In the end she wrote three prescriptions - 2 for the acne and 1 for my feet. For the dyshidrosis, she told me to use the steroid cream "since there is not much that can be done for it and it tends to be chronic." Now, I had expected that, but I had hoped for a bit more exploration as to WHY this was happening. I even prompted her by asking if the stimulants could be amplifying the dyshidrosis. She had no idea, but thought the possibility was intriguing. My daughter and I were back in the car by 3:56.
So, I sat in a doctor's office for 45 minutes, after spending a majority of my day compiling information for the appointment, to see the nurse and the doctor for approximately 10-15 minutes. Now, I know that even specialists are on the clock these days, but this was ridiculous. I developed dyshidrosis at the age of 39 and a half, and after almost 4 months of treating it, I still have active issues with it. I also have suddenly developed significant acne. Shouldn't we explore that a bit? Did she even have time to glance at any of the information or history that I provided? I doubt it. She kindly told me to call her if things did not get better. I certainly will. Perhaps, I am completely crazy. Maybe, things will get better within a month or two. I hope so, but I doubt it.
I know this is not her fault. I am sure that she is a great doctor. Sadly, we only see the brokenness in the system when we are stuck in it. How could the dermatologist have any idea how bizarre my last seven years have been? How could she know that I have been positive on a mono spot test four times, with two of those coinciding with skin issues? Was much of it in the material I gave her? Yes. Could she have possibly have read it all? Never. She wouldn't have had time to read it all even if I had given it to her a week ago. Why? She is likely scheduled to see 5-6 patients every hour. I don't "fit" into any box. Actually, I fit PERFECTLY into the dyshidrotic eczema box, but since no one knows how or why that condition develops, it is one more place to treat the systems - just like narcolepsy, and irritable bowel syndrome, and my type of chronic sinusitis. Maybe I am crazy, or maybe I am making myself sick.
All I know is that I am tired of going to doctors. I will still go, but I am far less vested in what any doctor has to say. That is good. A year ago, I think an appointment like today would have put me into a funk for days. Today, I am simply angry. I know that my dermatologist did the best she could; it is just that her best (or likely anyone's) was pathetic, but that is a result of medicine functioning as a business rather than as a vocation. She needs to see those 5-6 patients every hour so she can receive an appropriate salary, and the practice can still be profitable.
I am so glad to know that my acupuncture helps with the dyshidrosis too. I also know that I am the one who will make the biggest difference in any change in my physical and mental state. I can't control my narcolepsy, or my dyshidrotic eczema, or any of my other goofy medical conditions. What I can do is continue to work for balance. I will continue to have days like this one. Rather than rail against them, I can accept them and know that tomorrow will come with its challenges and joys. There is always another moment, another chance.
Tuesday, April 15, 2008
Western Medicine
Few things in this journey have upset me more than the realization that medical knowledge is incredible limited. I certainly don't blame my doctors. The human body is an incredible complex organic machine. My ire is more directed at the human hubris of believing that we "understand" so much about health. We don't! As advanced as medicine has become, we honestly understand only a fraction of how our bodies and genes and hormones and systems and environments all interact to produce our daily condition.
For me this dearth of insight is compounded by regularly being told I have "conditions" that are diagnoses of elimination. My bowels were, and still are, problematic. After extensive testing by a number of specialists, I firmly know that I have Irritable Bowel Syndrome. Of course that means nothing since no one actually knows what the "disease" is. IBS is a fancy way of saying, "your bowels are problematic, but we don't know why." Equally annoying are my sinuses. I definitely had, and still have, chronic sinusitis. My initial CT definitely showed that surgery would be the best course of action. Since that surgery in August of 2003, I have continued to be plagued by regular sinus infections and constant sinus swelling and inflammation. My ENT "vacuums" out my sinuses every six weeks, and I rinse my sinuses two different way twice each day. The crazy part is that the surgery worked! There is no reason why my sinuses should still be doing this, but two different ENTs, two different allergists and plenty of other doctors have been unable to find a reason. I am in that tiny fraction of sinus suffers that belie conventional knowledge.
And then there is narcolepsy. The first time that I fully realized narcolepsy is similar to my other conditions, I wanted to vomit - literally. Narcolepsy IS diagnosed by diagnostic testing. Pulmonary doctors have clearly defined methods to identify the disease. But, no one knows how the disease works. The best guess is that something is "wrong" in the sufferer's brain chemistry, likely a problem in the hypothalamus. Still, like IBS and my sinuses, all I can do is treat my symptoms. There is nothing I can do to improve my condition; I can only try to manage it. I feel like I am reach a level of acceptance with all of it, but it is so hard.
The final piece of my angst stems from the system itself. Managed care is great, until you get seriously ill. Specialists are amazing, until you don't fit neatly into a box. I have seen 18 specialists, 2 family practice doctors and an internal medicine doctor in the six and a half year journey since things became awful. All of the doctors have done their best, but they barely have time to see me in their offices, let alone talk to each other about my case. The one place that could happen is at the Mayo Clinic, but they aren't taking "new" patients and haven't been for two years. I can't believe that Western Medicine can be so advanced, and yet so backwards. Clearly, more than one system is involved - even if it is just my narcolepsy, yet a specialist won't even consider exploring those ideas. Part of it is the fear of malpractice, but it is also that a specialists knowledge base is so narrowly focused.
Thankfully, I have an acupuncturist, a chiropractor, a massage therapist, a therapist, a psychiatrist, and a men's group. All of them aid me in coping with the bigger picture of my life. That holistic approach will be what allows me to push through even the darkest days. But, what about the hundreds, maybe thousands, of people who also suffer the way I do, yet do not have all of these other resources. We need to find a better system. We need to incorporate more Eastern ideas into our medical approaches. More than anything, we need to begin treating the entire person and not just the fraction that seems to be "broken."
For me this dearth of insight is compounded by regularly being told I have "conditions" that are diagnoses of elimination. My bowels were, and still are, problematic. After extensive testing by a number of specialists, I firmly know that I have Irritable Bowel Syndrome. Of course that means nothing since no one actually knows what the "disease" is. IBS is a fancy way of saying, "your bowels are problematic, but we don't know why." Equally annoying are my sinuses. I definitely had, and still have, chronic sinusitis. My initial CT definitely showed that surgery would be the best course of action. Since that surgery in August of 2003, I have continued to be plagued by regular sinus infections and constant sinus swelling and inflammation. My ENT "vacuums" out my sinuses every six weeks, and I rinse my sinuses two different way twice each day. The crazy part is that the surgery worked! There is no reason why my sinuses should still be doing this, but two different ENTs, two different allergists and plenty of other doctors have been unable to find a reason. I am in that tiny fraction of sinus suffers that belie conventional knowledge.
And then there is narcolepsy. The first time that I fully realized narcolepsy is similar to my other conditions, I wanted to vomit - literally. Narcolepsy IS diagnosed by diagnostic testing. Pulmonary doctors have clearly defined methods to identify the disease. But, no one knows how the disease works. The best guess is that something is "wrong" in the sufferer's brain chemistry, likely a problem in the hypothalamus. Still, like IBS and my sinuses, all I can do is treat my symptoms. There is nothing I can do to improve my condition; I can only try to manage it. I feel like I am reach a level of acceptance with all of it, but it is so hard.
The final piece of my angst stems from the system itself. Managed care is great, until you get seriously ill. Specialists are amazing, until you don't fit neatly into a box. I have seen 18 specialists, 2 family practice doctors and an internal medicine doctor in the six and a half year journey since things became awful. All of the doctors have done their best, but they barely have time to see me in their offices, let alone talk to each other about my case. The one place that could happen is at the Mayo Clinic, but they aren't taking "new" patients and haven't been for two years. I can't believe that Western Medicine can be so advanced, and yet so backwards. Clearly, more than one system is involved - even if it is just my narcolepsy, yet a specialist won't even consider exploring those ideas. Part of it is the fear of malpractice, but it is also that a specialists knowledge base is so narrowly focused.
Thankfully, I have an acupuncturist, a chiropractor, a massage therapist, a therapist, a psychiatrist, and a men's group. All of them aid me in coping with the bigger picture of my life. That holistic approach will be what allows me to push through even the darkest days. But, what about the hundreds, maybe thousands, of people who also suffer the way I do, yet do not have all of these other resources. We need to find a better system. We need to incorporate more Eastern ideas into our medical approaches. More than anything, we need to begin treating the entire person and not just the fraction that seems to be "broken."
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