Simple question, yet a complex answer.
Most things that you read will say that the best nap is in the 30 minute to 1 hour range. I have read many different reasons why this is good. One website said that this amount of time is best because the average person does not reach REM. This in turn allows the person to rest without their mind firing up. At least based upon a couple sites. Some sites say that the best nap is just a 5 to 10 minute nap. I am not sure why this would be best. Honestly to me that seems like a waste, but hey if it works go for it. Unfortunately for me neither of those time frames work for me. My naps these days are two plus hours. Sometimes my naps are over four hours. Now most would say that a nap that long is not really a nap but actually sleeping for the evening. Another interesting thing for my naps is that after being up for one to two hours tops it is time to nap. At that time frame I am already starting to lose the battle with my mind to sleep. When I resist the urge to nap to long my head wobbles worsen, my walking gets labored, and my eye lids feel like lead weights. Really, the nap is not much of an option. With all of that said, in my expert opinion, the best nap length is what works best for you. The "experts" can provide a guideline but who fits into a perfect mold as to make the guideline work for you. I say don't worry about the experts and listen to your body, I am pretty sure it knows you better than any "expert". The next nap question is, should you wake up on your own or wake up to an alarm. Most things that I have read say that you should set an alarm. That way you are in control of your nap times and you can ensure that you don't overdue it. Again those experts know how long YOU, should sleep. My expert napping opinion on is that you should wake up naturally. I know for me if I don't wake up naturally things go all wrong for me. My stomach turns and I feel like I need to throw up. My head starts to pound like there is someone inside of my head and they are trying to jack hammer their way out. Plus normally my legs are extremely weak. I started out this a simple question: What is a nap? In my opinion is a nap is to take as long as your body and/or mind needs and you should wake up naturally. There is no cookie cutter time frame that fits everyone, it is what you need. You should never feel bad about how long your nap is, because the chances are if you are napping you need it. If our were not tired you would not fall asleep!
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As I close in on my first four full month of blogging I have gained great respect for those that blog. Before I started blogging I did not really read many blogs nor did I really know much about the process and how difficult it might be.
Content - I never truly understood how difficult it is to come up with ideas to blog about on a daily basis. As I am closing in on four full continuous months of blogging I have written over 120 blogs. That comes out to about one blog a day. But the longer I blog the harder it is to come up with fresh new ideas to blog about. I don't want my blog to be all doom and gloom, nor do I want it to just be about the mundane details of my daily life. I want my blogs to be a mix of many things, to stay fresh so that those that read want to continue reading. I have much respect for those that have blog for longer than me. I have no idea how they continue to come up with new ideas to blog about every day. Readership - My best guess is that I have about 75 people that read my blogs on a daily basis. Now for me that is not to shabby, at least in my opinion. But when you compare that to others it simply pairs in comparison. There are other bloggers that lose more readers on a daily basis than I have period. I have great respect that their blogs are interesting enough that they have thousands or tens of thousand followers. I have great respect in the fact that not only do they have huge amounts of followers but that they can also maintain them. Longevity - As I have already mentioned I have only been really blogging for four months. There are some people that have been blogging for years. I respect that fact that they have the drive and will to continue blogging for that long. While it might seem like it, it is much harder than you would think to blog every day. To keep churning out something decent for people to read. I can only hope that I can keep blogging as long as the many long term bloggers out there. Purpose - For me this is a big one. The purpose of my blog is not to make money, to make myself feel like I am better than others.... The purpose of my blog is to help others, to help myself, and if possible to help others become more educated about Narcolepsy. In the case of purpose I feel like I am right up there with man bloggers. I have not strayed from the original purpose of my blog and I do not plan to. If my blog were to ever stop helping others I think I would stop blogging. Respect - I have great respect for my fellow bloggers and hope that one day I might reach the level of followers that they have. I do not want a large amount of followers to stroke my ego or to feel good about myself. I want a large amount of followers to help educate others about narcolepsy and to help society understand how debilitating the disease can really be. For those that know me it probably seems strange that I am blogging about spirit. I am not an extremely religious person, I have always been more of a seeing is believing person. Now I am not to naive to think that everything is explained by science. I mean if you follow science it seems like for ages "man" did not move forward and did not improve. Then suddenly there was fire and things took off like wild fire. Strange being that fire was around before then, they just could not "figure" out how to use it.
If anything I would say that I always leaned more to Native American beliefs. Now yes I can not see them, they at least tend to make more logical sense to me. My mind can at least wrap around some of their beliefs better. With that in mind I were to say what spirit animal I felt closest to, I would say a wolf. Wolves are free spirits that are very loyal to their pack. They do most things in a group, hunting, raising their cubs, protecting their pack, etc. Everything about them is about their pack. They love to run free under the stars, they are uninhibited, yet very responsible. Everything that they do they do for a reason. They will do everything in their power to help their pack succeed. There is no quit in them! Those things all resonate with me. My family is everything to me. I will do everything in my power to help my family succeed. Many times no matter how things are, I will do what must be done to help my family. I love the stars, when I could, I loved laying outside at night and simply watching the stars. I did not need to look for anything specifically but simply watch the sky, it was very relaxing to me. It calmed my mind and helped me reflect on what I was doing and what I was going to do. I am a free spirit. I don't want to be tied down by anything. I am not speaking literally or someone talking about the "old ball and chain". I am talking about the direction of my life. About what direction I want my family to take. I want my family to grow and be successful in what ever they can be. I don't want anyone in my family to be pigeon holed into anything that they don't want to do. On a lighter note I have never let anyone tell me who I should be or how I should act. In high school I talked to everyone, no matter what group they were part of. I am that silly guy, not the class clown, but the guy that kept things light. I would go out of my way to brighten someone's day. I hated to see anyone down. In my adult life I continued on being that silly guy. Most people would say that I am a little weird, but they would say it with a spark in their eye because they would remember something silly that did. Or something crazy that I said that snapped them out of their low moments. Finally I am a fighter. I have and will fight for everything that is important to me. No matter how hard something may be, if it is important, my only option is to fight! I have done this my entire adult life and much of my childhood. No matter how bad things may have been or how nasty of a curve ball life has thrown at me, I have fought my life through it. Lately I feel like my spirit is fading. It is still there, you can still see it shining, but it is dulling. I still fight everyday, but my fight is against my own mind and body. I am hardly that silly guy. I don't have the energy to go out of my way to brighten someone else's day. Many days it is everything that I can do to just get up in the morning none the less anything else. Many days I don't feel like I have an fight left for anything other than myself. There seems to be very little fight left for my family. I still don't know how to do anything other than fight but it feels like it is only a singular fight. It feels like I am no longer fighting for my family. I can no longer lay in the grass and watch the stars because I can no stay awake. I can no longer run with the pack because my body is breaking down. Some how I need to find a way to restart that fire within me. Some how I need to find a way back to that wolf spirit. I need to be that silly guy that makes everyone laugh. I need to be able to run with family, literally and figuratively. I need to reconnect with my spirit! So, there is a silver lining - sort of, to me having to wear this walking boot...
Because walking is now awkward at best, I have to actually pay attention and concentrate on what I am doing. The silver lining to that is my cataplexy has been reduced. My knees are still buckling but at a greatly reduced frequency. I can only guess that the reason for this is because I actually have to concentrate to walk now. My left leg is shorter, even with shoes, because the boot is pretty thick. That means that my gait is all messed up. Because I can not move my ankle on my right leg, most steps with that leg almost hyper extend my knee. Short version I have to pay attention to every step. Because of that my mind can not slip off and do its own thing. So it can not go into REM as easily because of my concentration. Good thing right???? Well not all good. My left ankle and knee are sore from trying to make up for my other leg being limited. My right leg and knee are sore because many times my knee hyper extends with each step. On top of that I still have not completely figured out how to have the boot tight enough to keep my foot immobilized but loose enough to not hurt to hurt the top of my foot. I woke up again during my nap with that perverbial drill going into the top of my foot. So I guess with the good comes some bad. Hopefully in three weeks things will be healing up and I can stop wearing the boot. I am a bit skeptical of that though, as I am still getting quite a bit of pain on the top of my foot, hence the drill feeling. I almost think I might have a bone or something out of position on the top of my foot. Because of that to much pressure pushes it against my other bones causing pain. I am no doctor but that just seems to make sense to me. If I just had a standard break, simply pushing down and keeping things in place should not hurt like this. But hey for now, at least, my knees are buckling less. It could be worse I could have the boot and still have my knees buckle every couple steps.... That would be fun! Why does it seem like when timing is important to you it seems to not matter to others?
For me I am specifically talking about two things. The first is probably the most important, my disability case. I have a 60 day window to file my appeal for the denial of my disability. To complete this appeal my lawyer is trying to collect as much documentation as possible. One of those pieces of documents is information from my newest Neurologist. The basis for this additional information is two fold. The first is because he agreed with my narcolepsy and Cataplexy diagnosis. Obviously having an additional doctor state that my diagnosis is a positive thing. The second thing is that he has also added Cervical Destonia to my diagnosis. As this is an additional unusable disease this strengthens my case. My lawyer has contacted UW three times and I have contacted them once and we are still in the waiting game. At this point my appeal is waiting on UW getting off their butt and providing the required documentation. Now I understand that UW is a a big medical facility but they have a specific department for medical records. I am struggling to see how after 4 request we have still received no response. I know I am just another number to them but this number needs them to do their job. The second area where people are dragging their feet is my pharmacy. One of my medications requires me to have a written prescription everyone month for it to be filled. My doctor is on top of this and the prescription is sent out once a month directly to my pharmacy. But for me to get this filled I have to call every month for them to process it. I find it awfully strange that for standard prescriptions they have a program that reminds me to refill my prescriptions but this one I have to force their hand. When I call they say well we did not fill it because it was received before it can be filled. Call me silly, but if you have a system that notifies the patient that they need to fill a prescription, you don't think they can make a reminder in their system for this. That is not to big of a stretch considering when they have had to complete prior authorizations they have been on the doctor's office to get the proper documentation for them to send it out. If they don't get the documents they know that and they follow up many times not only with the doctors office but also me. So if they can do that why can't they fill a script when it is available to be filled? In the big scheme of things I know that these ultimately are minor things that should be easy to work through. It just drives me crazy that it seems that even some of the simplest things can be so hard. On the bright side I will wake up tomorrow and it will be a good day. Plus I only had the feeling of a drill going through my foot once today instead of twice yesterday. I think I know the trick to putting my walking boot on without bothering my foot to much. I feel like I am losing my mind.
Last night I took my day time meds again. Never mind that my pill container is marked AM and PM so that you know which ones to take. Never mind that my night time pills have multiple "horse pills" so it is very obvious that they are my night pills. To make sure I don't do it again I think I am going to buy another pill thing. One in the kitchen for my morning pills and one in my room for my night time pills. Hopefully that will keep me from mixing them up again. On top of that I have had other weird things going on. I keep feeling like my right hand has something sticky on it. I will wash it and it is still sticky. I does not seem to matter what I am doing the stupid thing feels sticky all of the time. I could probably wash my hands and put my hand in a sterile bag and it will still feel sticky. I have no clue what is going on and it is driving me crazy. Why does my stupid hand feel sticky???? On top of that I am starting to smell things that are not actually there. Today at my doctor's appointment for my foot I took my shoes off and I was blown away with the smell. I thought to myself that is crazy. I literally showered less than an hour ago and I have done nothing to make my feet smell. But MAN they were stinky, or so I thought. As we were leaving I said something to my wife about my foot smell and she said, umm I did not smell anything. She said that stinky feet is one of her "smells" so she would know. So when we got home I took off my non-booted foot and bravely smelled my sock. Nothing, just smelled like a clean sock. Then tonight when I removed my boot, (I felt like someone was drilling through my foot) I got that whiff of nasty foot smell. I don't know what to think. On top of that I have had a migraine for pretty much the last two days. Now I know it is because I am crashing, but what gives. It does not matter how much sleep I get, the headache does not go away. I can't seem to break the crashing cycle. My last, feeling like I am losing my mind moment, was after my wife came home from picking up Alex. My head hurt and my stomach was turning, but that is consistent with me crashing. I was drained and was just sitting in my chair completely zoning out. Angie asked me what was wrong and I told her I was just tired. She came over and said something else, I honestly don't know what and tears started rolling down my face. I did not feel upset, just completely drained. Honestly it felt like I was in full zombie mode but I was crying. If anyone finds my mind feel free to mail it back to me because I am pretty sure that I don't have it right now! It feels like I am losing the war right now and my mind just slips farther and farther away the farther I fall behind in the war! As many of you know I had injured my a little while ago. In all reality my foot has hurt for months but I was able to deal with it. Unfortunately after kicking the bottom of kids foot in soccer and doing a ropes course the pain became much more acute and I needed to get it looked at.
I orginally went to my PCP and he ordered an x-ray. During the visit he told me to take ibuprofen three times a day, ice it, and just take it easy. He called with the results of the x-ray to say that they foot was not broken but it had some arthritis and beginnings of bone spurs. He suggested I give it 10 days and if things had not improve go see the foot doctor. Well being that my feet are pretty important to my movement I asked for a referral right away. Today I went to the foot specialist. He was a pretty decent doctor and seemed to pay attention. I told him that while I don't know a lot about arthritis, I did not think it came with such acute pain in one specific area. He said that I was right and then examined my foot. He started feeling the bones of my foot and there was one spot on my smaller three toes that hurt as he pressed. He then went back to the x-ray and reviewed it himself, (he said that he does not really trust the x-ray techs). He looked at the x-ray for a while and then came back over and finished examining my foot. He said that sometimes you can have a small stress fracture that is easy to miss, (in reference to the spot on my smaller toes). Then he addressed the pain on the top of my foot. Basically he stated that he felt that I had a stress fracture somewhere in the bones on my two largest toes. He said that an x-ray is a really bad way of finding any breaks in that area of your foot. So his plan of action was to treat my foot as if I had broken it. He gave me a walking boot and ordered an MRI of my foot. It said that an MRI is really the best method to see if there is any fractures in my foot. He wants me to wear the walking boot for three weeks and then come back to see him. He also stated that he was going to call with the results of the MRI. After my appointment my wife and I grabbed some lunch and then went home. I really needed to nap as I had been up since 4 in the morning. As I was getting ready for bed the hospital called and scheduled my MRI for next week, (I am actually floored they called that quickly). Then off to sleep I went. About an hour and a half into my nap I woke up with some serious pain in my bad foot. It felt like someone was trying to drill a hole through the top off it. I was practically in tears. As I was trying to do the right thing and follow doctors orders I did not take the boot off but I did loosen it. Unfortunately that did not do the trick, that drilling feeling did not let up. I finally gave in, I could not take the pain any more, and I took the boot off and tried to go back to sleep. Unfortunately going back to sleep was not happening my foot was hurting to much. Instead I limped to the bathroom because my foot was still in killer pain. Well I have since figured out why the boot made my foot hurt so much. Previous to going to the doctor the top of my foot was pretty sore. I actually had to tie my shoes just right so that they were tight enough to not allow my foot to slide but loose enough to not put pressure on the top of it. Well the entire concept of the boot is to not allow my foot to move. To do that it has to put pressure all the way around my foot including the top. Essentially it is doing exactly what I was trying not to do with my shoes, put pressure on the top of my foot. If I stand or walk I am OK because my foot can sink into the boot a little and relieve some of the pressure. When sitting in my chair I have to occasionally sit forward and put pressure on my foot to try and reduce the pressure on the top of my foot. Actually as I am typing this blog I had to quickly remove the boot as that drill was back at it again. I am so torn with what is actually wrong with my foot. In theory if it is broke, it is something that can be fixed and the pain will go away. BUT, at a minimum I have to be in this boot for 3 weeks. Being that I am still not on the proper drugs I am guessing that I am looking at more like 6 weeks healing time and that is assuming the boot does the trick. Based upon how bad the boot is hurting me, I am guessing that the boot is not going to do the trick..... If it is arthritis the pain is not going away and I will still probably be wearing the boot for 3 weeks until the follow up. Neither option is good! Also I don't know if I can make it three weeks in this boot! I don't know how many more times I can take it feeling like someone is trying to drill through my foot! Needless to say, I am very conflicted on what I want to be wrong with my foot. Also I might have to call the doctor back and let him know that this boot might not work. I will do my best to wear it, but I don't know how many more times I can take that feeling of someone drilling through my foot! I have blogged a lot about my symptoms, my kids, how things seem to be going wrong, etc. But I have talked little about the support that PWNs (persons with narcolepsy) get. So today's blog is an ode to them, the people that support PWN or anyone else that might have an invisible disease.
To begin the blog the first thing that came to mind is the song "What Are Words" by Chris Medina. The basic story behind the song is that Chris's fiancé was injured very badly after they were engaged. Unlike many he continued to stand by her side even though in many ways she was a shell of her former self. Not really unlike many of us with invisible diseases. The following section of the song really resonates with me for my own wife: "What are words If you really don't mean them When you say them What are words If they're only for good times Then that's all" Many things have changed in my our life since we started dating almost 20 years ago. Up to six months ago I was everything that society says a good husband should be, (at least I hope so). I was a loving father and husband, I was very involved in my family's lives, I was the bread winner, many times I was our family's rock, I was what I expected a real man to be, (in many cases this is still true but in different ways). In a short 18 months all of this changed. In that time frame as my abilities waned and I struggled with my new reality my wife never left my side. I cannot lie, we had rough times, but we fought through them. My wife did not think any less of me, in many cases I think she had even more respect for me. Think about that, as I was able to do less and less of what I did in the past, my wife gained more respect for me... Unfortunately that is not the case for everyone. It is safe to say that things have gotten exponentially harder in our lives, but our love for each other has not changed. I would go as far as saying that our love has grown. Our lives may have gotten harder but my wife has not left my side. She has been there every step of the way to hold me up and remind me that I am no less of a man now than I have ever been. My wife has truly taken to heart the following verse in the song, (of course removing guy and replacing it with girl): "How every single promise I'll keep 'Cause what kind of guy would I be If I was to leave when you need me most" I salute everyone that supports those of us with invisible diseases. I respect everything that you are going through. While you might not completely understand what we, those with invisible diseases, go through, your support of us doesn't waiver. In many cases our diseases are even harder on you because as much as you want to help us, in many cases you can't. On top of that you have to deal with the anger and sadness that we have. Thanks to you all for everything that you do! Recently there has been a lot of negative vibes in many of the support groups I follow. Heck inside of my own house there has been plenty of negative vibes going on. There is no doubt in my mind that in both the groups and in my own home there is justification for those vibes, but that does not mean that there is not something positive to focus on.
As I am writing this blog I am remembering an old moving staring Cher. The movie was called "Mask" and was about a boy with a facial deformity. What sticks out most in my memory about the movie as while the kid had lots of reasons to be down, for the majority of the movie the kid made the best of his life. No matter the odds that he faced he focused on what he could do, not what he could not. In my opinion that is what we all need to do, focus on the cans, not the can nots. With that in mind I am going to list 5 things that I can do: 1. I can be a good parent 2. I can be a good husband 3. I can be a productive member of my family 4. I can make a difference 5. I can help others To me those 5 things are pretty significant items. No matter who wrote those things and not matter what was going on in their life, the person still has some very important things that they can do and they have a lot to live for. So now I have a challenge for anyone that is willing to do it. In the comments for this blog I would like you to list up to 5 things that you can do. Nothing is insignificant because it is something that you can do. Nothing is insignificant because not matter what you face you still have the ability to complete the item. Who is willing to accept my challenge? If my hunch is right, simply outlining those items will help you remember that all is not lost. It will help you remember that you can still do so much more than you realize! While trying to get answers for narcolepsy I tended to let some of my other recent issues go by the side. My thought process was that I wanted to focus on the biggest issue and once I got some movement there I would move on to the smaller things.
Well recently I made the decision that this is probably not the best solution. It does not make sense to let other things wait when getting even some sort of relieve is better than nothing. With that said at my next appointment with my Neurologist I am going to discuss working on my head movements. Part of the reason for making this call was my head is starting to become more of an issue than I really want to admit to. While all the movement when I am awake is annoying and occasionally cause pain it was something that I was simply dealing with. That was until it interrupted me sleeping at night. Yes, you read that right, it interrupted my sleep. One night I was attempting to sleep on my back and my head would not stop moving. It was small movements but movement none the less. It bothered me enough, that even though I was extremely tired I was not able to go to sleep. That night I ended up being awake until approximately 6 in the morning. I have enough issues with sleep I don't need to add any additional issues to it. With that said at my next doctor's appointment I am going to move forward with trying to treat my Cervical Dystonia. While it is not curable there is some forms of treatment. The first line of treatment, based upon my doctor is to get botox injections in your neck muscles. He said there will be some initial pain but that most of his patients get relief from their symptoms for 3 - 6 months. So while m appointment is not until June, hopefully I will get some relief with something soon. If nothing else at least I will have some improvements with my head movements. I might even be able to answer yes an no by nodding my head again! :P How powerful is music? While that may seem like a very mundane question it really is not. There are many different things in a persons life that music can affect.
For the purposes of this blog I am solely going to focus on things that have happened or are happening in my life to explain how powerful music is. The first thing I want to explore is how powerful music is in helping unlock the true potential of your mind. To do that I am going to look at my two oldest sons. First would be my oldest Anthony. Anthony is a senior in high school who has already been accepted to his college of choice. Part of the reason he got to that point is because he has only received two Bs in his entire high-school career and that is with him taking multiple hight level college math courses. But that is really near the end of the story not the beginning. Anthony has always had music in his life. It started with me and my wife's musical tastes. We listen to all sorts of music ranging from classical all the way to Native American Music. We have favorite artist that span from Bob Seager through Yo You Ma. For his entire life he has been exposes to all sorts of music. On top of that he has had a love for playing in the orchestra since a very young age. Currently he is the principal violinist in his high school orchestra and he has been invited to play for a local semi professional orchestra. On top of that he has learned how to play the cello a little bit. In my opinion his love of music has helped him achieve his true potential. He is not your typical "smart" kid. He excels in not only math and science but he is also very strong in english, (even though he does not think so). On top of that is he very personable and a natural leader. He is a very well rounded person with very few weaknesses. In my opinion without music it would have been much harder for him to achieve what he already has done in his life. Then there is his middle brother Eric. Eric is five years younger than Anthony but he has been exposed to some of the same musical enfluences as his brother, except he has one additional infuence, his brother. Eric is much like his brother in that he excells in math, science, and english. His also a natural leader who is able to communicate with anyone. Eric is also extremely comfortable in his own skin. He does not care what other people think of him no matter what. He is not afraid to wear mismatched socks but not just color but size, shape, you name it he does not care. It is not uncommon for him to wear one ankle sock and one knee high sock, he does what he thinks is cool. Eric has taken his musical aspirations a couple steps past Anthony. Eric is not afraid to take over and conduct the class while his teacher is out. His is not afraid to be the driver for his section, (also the violin) and ensure that they do the best that they can. He has already taken up the drive to learn playing the cello, he has actually stepped in and helped the orchestra by playing cello in a concert because they were short. In many ways he is single handedly ensuring that his orchestra succeeds. He has not stopped there. Eric is also a very good singer. He is in 3 choirs and most of the time he is a leader in all of them. He has the largest range out of almost all the other choir members. He is able to sing bass when needed and step in and sing the high notes when needed, (yes sometimes in place of the girls). Eric is not afraid to sing any part as long as it helps the choir perform. Both Eric and Anthony's love for music has taken them to new levels. They are blazing a path to far surpass anything that either me or their mother have ever done. They are also laying the ground work for their youngest brother Alex to follow, as he is already showing great interest in music just like his brothers. Music has had a very strong and powerful influence on all three of their lives. I hope it is obvious to see that music has had a very powerful affect my children's life. But it also has a powerful affect on my. As I have written before my memory is bad at best. But the memories are still there, I just struggle to access them. When I listen to my favorite songs many times good memories will come back to me. I may not be trying to remember those things but music brings them to me. So not only do I get to enjoy some of my favorite music but sometimes I also get to remember some of my favorite memories that I might not normally be able to access. Music does not stop affecting me there. It is not often that people ask me what is wrong, why am I sad.... The majority of the time I am not sad, upset, or anything negative, I just don't tend to be extremely happy or extremely sad. I kind of float in the middle... Many times when I am experiencing emotions outside of that "middle" I am not always aware, but when I listen to my favorite songs that all changes. Many times those songs actually make me feel happy, happy enough that I am aware. Many times I am not thinking about anything but I feel happy. I would even venture to guess that if you were to pay attention to me I would be smiling. That is not the end of how music affects me. The last way music affects me is when I go to sleep. Almost every time I take a nap or sleep for the night I use headphones. Partially that is to drown out any outside music but it is also to help me sleep. I tend to listen to native american music, R&B, love songs, soothing types of music. This music helps to calm my mind and ease me into sleep. Many times it is this music that allows me to overcome the headaches and stomach aches that I get from crashing. It gives me something to calm my mind and to focus on. Many times it is a life saver because the symptoms from those crashes can be pretty nasty. With all that said, in my opinion music is a very powerful thing. I think it is not only a powerful tool to assist in the development of our young but also in helping us as adults. It can never hurt to turn on your favorite songs and just lose yourself in the music! What does a healthy person look llike? What does someone with a chronic illness or disease look like?
I myself can not answer either of those questions. There are way to many variables to try and consider to come close to answering those questions. But let's try and see if it is possible if you can really answer those questions. To do that I think it is important to understand what a chronic illness or disease is. When I researched to find the "book" definition of chronic disease it said something to the fact of a disease or illness that is long lasting or something that is expected to last longer than three months. My version of that is pretty simply, a disease or illness that is expected to last a long time, possibly forever. Some more common chronic illnesses or diseases that come to my mind would be cancer, diabetes, dementia, etc. Some not some common chronic illnesses or diseases would be multiple sclerosis, narcolepsy, pulmonary hypertension, etc. Now that I have defined what a chronic illness or disease is, I can attempt to answer the initially posed questions. Let's start with the first, what does a healthy person look like? My guess is that most people think a healthy person is probably fit; they are close to societie's acceptable weight, they have good muscle tone, good cardio, etc. Think your average close model. They are not super thin, they are not super muscular, they are "healthy". But most of those things are things that you can see with your own eyes. How do you really know what is going on in the inside? How do you know that they don't have some sort of illness or disease? Those questions no lead to the second question posed above. What does someone with a chronic illness or disease look like? To attempt answer that I am gong to simplify it a little bit. The new question is; what does a unhealthy person look like? The reason for this change is because my guess is the majority of people equate unhealthy with having a chronic illness or disease. I will start with some of the more "common" answers to what most people feel is unhealthy. The average person would probably say that anyone that is heavier than societies expectations is unhealthy. It makes sense right, if they were healthy they would be "thin". I can personally debunk that theory. Even at my thinnest I have never been able to meet the acceptable weight standards my my height. I think the closest I have ever come is being 25 pounds over that "accepted" weight. But even being technically overweight I was in very good shape. I was running three miles a day, I was able to bench press over 200 pounds for reps, I had a very strong core. For all intents and purposes I was "healthy" but I did not meet societies definition for healthy. Some people might give a broader answer. They might say that someone is healthy if they are happy. You know they are happy if they are smiling. As we all know, faking a smile is something that just about everyone is capable of doing. In actuality many people with chronic illnesses or disease put on a fake smile everyday. They don't want people to feel bad for them so they hide their pain or their fight. Short answer here, just because someone is smiling, unless you know everything about that person, you know nothing behind that smille. Not to the more difficult to describe things. How do you know if someone has diabetes just by looking at them. There are a couple tell tale things; if you see them take their insulin shot or if they have an automatic insulin pump. Maybe if you happen to see them without a shirt on and they have some bruising at their injection point. More than likely unless they want you to know, you would never really know if someone has diabetes. How about cancer, what does someone with cancer look like? Yes, some people going through chemo have lost a lot of hair. But at the same point many of them cover it up, so that you would never know. In some cases they might have a sore from having cancer removed, but again that is normally covered so all you would know is that they had a cut of some sort. In most cases you have no clue if a person has cancer unless they want you to know. There is a common thread here. In many cases unless someone wants you to know they have a chronic illness or disease you simply won't know. In many cases these people hide what is going on not for themselves but for you. They don't want you to feel bad if you say something stupid. They don't want you to feel bad if you misinterpret what you see. The lesson here is that there is no way for you to know if someone is healthy or not. There is no way for you to know what someone is hiding. I will give you a personal experience to help highlight this point. At first glance I am a healthy person albeit an over weight one, but overall healthy. On top of that I am realitively young at 37, I still have a lot of life ahead of me. So now imagine what many people would think when the see a 37 year old man riding around on an electric shopping cart. Other than being over weight there does not appear to be any reason for me to be on the cart. On top of that you might see me stand up off the cart with little effort and grab something off a shelf. For all intents and purposes you see a healthy person possibly abusing the use of an electric cart. But I have multiple chronic things going on. For one I have narcolepsy with cataplexy. Narcolepsy in general is not the reason I am on the cart. Honestly sitting is bad for me, but then there is my cataplexy. Most days I can only take a handful of steps and my knees will buckle. The longer I walk the more my knees buckle. On top of that I am having issues with one of my feet, issue that cause me pain with pretty much every step. So while I might appear to be overall "healthy" I have lots of things gong on. If you make a judgement about me using the cart based upon what you see, you are making a very uninformed judgement. Never assume that you know what is going on with someone. Ultimately we are all better to just give people the benefit of the doubt. While yes some people might abuse that, the majority of people will not. The majority of people will appreciate not having to explain to everyone they see what is going on in their life at that moment. They just want to be able to live their life to the best of their abilities without being judged. Groundhog Day was a movie from the early 90s that starred Bill Murray. The basis of the movie was that Bill's character must relive groundhog day over and over until he got it right.
Some times I feel like my life is just like this movie but with a cruel twist. There is nothing that I can do to make the day right, so I get to repeat the day over and over again with no reprieve. I do my best to start each and every day out on a positive note. I honestly do. But it is really hard to keep a positive outlook on the day when the moment you step out of bed you are reminded that things have not changed. Everyday I get out of bed either my right foot hurts, or my eyes are so heavy that I can barely open them, or my knees buckle, or.... There is not a day that I get out of bed when there is not some reminder of how my health simply sucks. I put on a brave face and I fight. I fight with every part of my being. I fight 24/7 to keep going but it is really hard to continue playing the same day over and over again when there does not seem to be an end in sight. It is hard to keep putting up the good fight when there isn't something for me to do "right" to make tomorrow a different day. Honestly I would be happy to simply see that one little glimmer of light at the end of the tunnel. I just want something to go right, something to change the next day for the better. I try to keep a positive attitude but when day after day the same thing repeats itself it is hard to remain positive. Logically I know that something has to turn around eventually but will it turn around fast enough. Will it turn around before everything I own is gone? Will it turn around before my body completely breaks down? Will it......... I truly believe that I am lucky that I will wake up tomorrow. There are to many people everyday that don't get that opportunty. I truly believe that tomorrow will be a better day. I just need it to actually happen. I need something to turn in my favor instead of turning against me. I will wake up tomorrow and it will be a better day! Recently someone used the term fear in regards to narcolepsy. Initially I had to think about how the word fit, but quickly I was able to make the connection.
To help explain my connection you first have to understand what I think fear is. To me fear is a subconsciences thought about something that might happen. The thing you are scared about could be a positive thing or a negative thing. For instance many people are scared about getting married because they are afraid of the unknown. To me that is fear about a positive thing. I think fear about negative things is pretty self explanatory. So what is there to fear about in terms of narcolpesy? Obviously there is the fear of the unknown, how is narcolepsy going affect my life. But there are many other things that can be very scary about narcolepsy. For me there are at least three things that I am fearful of. The first fear is not necessarily narcolepsy but what will happen if I get injured. I use movement to stay awake as possible. So if I get injured what will I do to stay awake and alert if I can not move. Unfortunately this fear has come true. I have an injury to my foot, potentially a long term injury and I currently can not use movement to stay awake. As I feared this is making my days much harder. Instead of moving, now I sit most of the time. Yes I have figured out a method to kind of stay awake but it is not near as effective as movement was. My next fear is will I always know what is real. While that might seem like a strange fear it is a very real one. I have already had at least one instance where I was certain my son was not following directions when he actually was. To me I still have a very clear memory that he was disobeying me, but it is a false memory. How many other times has this happened? I will never know! How many times will this happen again? Again I will never know! How big of a thing might I make up? Could it be worse than just yelling at my kids? Could I lose something important, could I lose money, could I do something that would put my family in trouble? I don't know the answer to any of those questions. The last fear is how long can I keep up this fight? How long can I fight 24/7 to simply stay awake and yet still be a fully functioning adult? I already have practically no energy and yet I use almost all of it to simply stay sort of awake/aware. How long can I continue to push my mind to its limits and beyond? Now those fears are very real. Those fears are rooted in some sort of facts that have already happened in my life. But that does not mean that I have to give in to those fears. Yes I am painful aware of them but I will not let them run my life. I will not put my life on hold because of them. So what can I or anyone else do to overcome these fears? The best method I have found is to live in the now. Now, the does not mean that I am not aware of the future or what needs to be done in the big picture. It means that I focus on my daily actions, I focus on those things that I can control. I don't worry about what I could or couldn't do yesterday. I don't worry about what I might be able to or not able to do in the future. I focus on today. So let's apply that thought to the three fears above. The first is the fear of injury and what it might mean. I am already injured and there is some uncertainty about the injury. BUT, I don't focus on that. I try to much as I can do every day. If my foot hurts to much I slow down. I purposely don't move near as much as I want, but I don't worry about it. I focus on right now and what I can do. For instance at this exact minute I am not moving, my foot does hurt, but that is ok. I am still able to blog, I am still able to talk with my wife. My now is ok, so I am not worried about my foot. How about my fear of know what is reality? I can't worry about that. I have to trust what I know and remember. I have less instances of where my memory was a fake than not, so I trust it. Is there a chance it could be wrong, yep, but until that instance happens I live in the now where my memories are all real. Then there is the fear of how do I continue to fight. This one is pretty easy, because if you don't look to tomorrow or the next day it is pretty easy. My only option is to fight, so I fight. In the now, I fight because I can. I guess my message is to not dismiss your fears because that is not going to work. Just the act of trying to avoid them or pretend they don't exist will simply keep those fears in the forefront. But you have to live in the now. If you live in the now your fears have less power because you know that right now those fears are not true. You know that right now those fears are not affecting you. Living in the now allows you to live your life to the fullest. Today should’ve been a good day for my Narcolepsy symptoms. I actually slept in until 8am. I got a 5 hour stretch of sleep for the first time in months. This should've been a good energy day for me. But it was not.
By 11 I needed a nap. While that is pretty normal for me to nap after a couple hours being up you would have thought I could have done better. But alas I could not. Once up from my nap, my wife and I ran some errands. At the most we were gone a little over three hours. During this time we also had lunch, which overall is a good thing I terms of my symptoms because when I am actually eating I don't seem to crash. We only went to two stores and in both stores I road the eletric carts because of my cataplexy and sore right foot. Again this should not be so taxing, especially after getting some have way decent sleep for once. Again that was not the case. By the time we got to the second store I was already starting to crash. But I tried to push through, I can't always sit in the house and do nothing. The longer we were in the store the more I was crashing. I was starting to close my eyes when driving that stupid cart. My wife offered to finish later but I did not want her to have to come back on her own later. To add insult to injury, my stupid cart was starting to die. At one point my wife and I split up to make things go faster. On my way back from getting the item I was after my cart completely died. I am embarrassed enough using the stupid things and now it broke. Ahhhh…. But I was getting so tired I did not really care. I just kind of sat in the middle of the Isle hoping the cart would magically work. As much as I wanted it to work there was simply no drive to do anything about it. Luckily for me a Walmart employee noticed me just hanging out and offered to get me another cart. It was bad enough that I needed the stupid thing, now I needed someone to get me another one…. GREAT! The employee rolled up with my new cart and helped me transfer my stuff over. A very nice gesture but it sure is a hit to that stupid male pride. After things were transfered I found my wife and we finished our trip. My wife was starting to try and go fast now because I was obviously running on fumes. She actually purchased some clothes without trying them on, which she never does. We made it through the checkout and went to our car. My wife insisted that I sit in the car while she loaded our stuff in it. As much as it pains me to admit it, but she made the right call. We got home and I went straight in and took another nap. I did not help bring anything in or put anything away, I just went to sleep. After getting up from my nap I managed to make it through the rest of the night. I did play catch with my wife and sons which helped me stay awake. But at least I was able to finish the day sort of awake. Today should have been a better day but Narcolepsy decided that was not the case. On the bright side I will wake up tomorrow and it will be a better day. I have blogged many times about the symptoms of Narcoelpsy. Many other people have blogged about their symptoms. But how do those symptoms affect the complete person? How do those symptoms affect their mental state on a daily basis?
For you to truly understand that question you first must understand what a normal day might be like for a person with Narcolepsy. To do that I will set a little background for you. First of are parent of one child that is 10 years old. Second it is a weekend with little planned expect for a family get together later in the day. You really don't want to go because it does not start until late, but you were guilted into going by your family. So with out further ado, let's try to understand the mind of a person with Narcolepsy. Being that it is a weekend you allow ourself to sleep in. Mistake number one, you do some much better on a schedule, but you are just so tired. Well you sleep in until 9am, not bad, but three hours later than your normal schedule. As you try to wake yourself up, every part of your being is telling you to go back to sleep. You are literally struggling just to keep your eyelids open. They are so heavy, it feels like someone has put weights on your eye lashes and they are pulling your eye lids closed. Finally after 15 minutes struggling to open your eyes you finally sit up. You have finally mustered the strength to keep your eyes open but now you have to get out of bed. You swing you legs over the side of your bed and put your feet on the ground. You hesitate for a moment before you attempt to stand, you know it is going to hurt. It hurts because you don't get restoritive sleep so your body does not repair it self. With that in mind all the pounding from walking at your job during the week makes your feet so sore. None the less, you push through, you HAVE to get up. With a big sigh you lean forward, bite your lip, and stand up. You just stand there for a moment to allow the pain to rush through your body from your feet. Know that you have your bearing and pain is no longer a shock your start to shuffle towards the door of your bedroom. You shuffle because it is less painful than walking. Finally, you are up and going and you start your day. Being a weekend is a bane and a blessing at the same time. It is a blessing because you don't have to worry about work and the drama that goes with it but it is a bane because you don't have that singular focus to help keep you awake. Today is pretty open other than this evening and you are already dreading the day. You don't know what you are doing to do to stay awake. You don't want to sleep all day because you want to spend some time with your kid. With that in mind you force yourself to shower and get dressed for the day. After your shower it is pushing 10am and you are already exhausted. Your eyelids are getting pretty heavy again, but it is way to early to take a nap. You decide you might as well eat a light breakfast. You walk out to the kitchen and look in the cupboard looking for a granola bar. Out of the corner of your eye you see a blur and hear your kid laugh. Kind of started you start to look around wondering where you kid when but you can find them. You go all through the house, check the yard, the basement. You yell your kids name because you are starting to worry. You hear a faint groggy response coming from your kids room. They were still sleeping, makes sense, it is the weekend. CRAP! It is only 10am and you are so tired you are hallucinating. This is going to be a rough day. After all of the searching around the house it is now close to 11am and you figure that there is no need to eat now lunch is right around the corner. Your stomach is growling at you but you don't want to waste the food. Man, you are really tired, you just want to go back to sleep. Maybe if you just take a quick 10 minute cat nap your would be ok, but NO, your naps are never that short. For the next hour or so, you just kind of slog around your house. You are to tired to start any kind of project but you don't want to sit down because you are afraid you will pass out. As noon rolls around, you here the local church bells going off so you you know it is noon, or is it. Did you really hear the bells? To make sure you go look at the clock in the kitchen, it says 11:50. You scratch your head in confusion, you know you heard the church bells, or you think you did. So you pick up your cell phone, 12:02, you DID hear the bells! That is a load off your shoulders. Time to make lunch. What to make? Do you have the energy to cook something? Maybe, but what if you fall asleep while it is cooking? Just last week you left the water boiling on the stove so long that by the time your kid reminded you all the water was gone... So, ham and cheese sandwiches with chips it is. You holler for you kid to come join your for lunch and you sit at the table. You kid comes down, taps you on the shoulder, and scares the CRAP out of you! WHAT, you say pretty curtly! You kid says, I don't know you called me down. You sit there for a couple moments racking your brain, what did you want. Then your stomach grumbles, ahh that is right lunch. Man you hate it when you forget what you were doing. Anyways, you ask you kid what he wants for lunch, but wait a minute, didn't you, ahh never mind. Back to lunch. You kid starts to say how about Mac.... Then nothing, you ask what did you want. Oh nothing, how about sandwiches. You are crushed, you know they said, but they did not want you to forget and leave it cooking to long. But you don't want to show your frustration, you smile and go grab the stuff for standwiches. As you are making ham and cheese sandwiches you remember, duh, I had already planned on making these. What is going on with you today??? After you finish lunch, both you and your kid pick up the mess. Your kid goes outside to play, it is another 80 degree day with no clouds. So what should you do now. NAP! Nope, no napping, to much to do. You need to do dishes, get ready for your family get together later, just stuff. You have a lot of stuff to do. But man, sleep is calling your name, you are so tired. You decide that maybe you use need to sit down for a couple minutes, recharge and get back at it You sit in the recliner, turn the TV on and..... Hmmmm, what is going on... You are still sitting in the recliner but you have no idea what is on. You look at your watch and it is 4pm. WHAT! No way, there is no way you slept, you just sat down. You look around for your cell phone and can't find it. Where is that thing, you know you just had it. That's right it is in the kitchen. You go to hop up, big mistake. As you land on your feet, you realize you were sleeping as pain shoots up your legs. Well you won't do that again. You find your phone and .... What the heck, you have 10 missed calls and countless text messages. Then you notice the time, it really is 4pm, how did that happen. All the text messages are from your mother reminding you not to miss the get together. All of the missed calls are from your dad. Man they sure are pushy. Don't they know how tired you are. Man your eye lids are getting heavy again. Didn't you just get up???? Oh well, the day is shot. You have to get ready for you family thing. Hmm, where is your kid. You kind of spin around in the kitchen trying to see if you can find them. But no luck, maybe outside... Nope, their room.... Nope, OK this is silly. You yell out again, no response... Crap.... You are getting worried. Wait, you call their cell phone. YES, they answer kind of curtly. POW, you are hot, how dare they give you attitude. But, you take a deep breath, and ask where they are. Umm... Don't you remember, we talked about this. I am staying at my friends house, I did not want to go with you tonight. You pause for a long moment, you try really hard to remember... NOTHING. You start to question your kid and they tell a very plausible story. They tell you that you were sitting in the chair watching your favorite show and you both had an in depth conversation. Not wanting to feel like an idiot you go with it. Their friend is a good kid and you are ok with them being there. That leaves you to get ready. You start running around the house like a mad man because you are supposed to be at your parents house in an hour. It takes 45 minutes to drive and you have nothing ready. Then it hits you, you have to drive 45 minutes ALONE! You are struggling to keep your eyes open now running around like a mad person, how are you going to stay awake sitting. You push that out of your mind and finish getting ready, you think. You hop in your car, turn it on, and then wait..... What are you doing again. You look around in the car for clues... Ahh yes, your parents. You back out of the driveway and off you go. 5 minutes in and the urge to sleep is real. You just want to pull over and nap, but you have your mother's voice in the back of your head saying you better not be late. You better not skip out on us again. Your roll the windows up and crank the AC on high. Your hands are so cold you can't feel them but you don't want to fall asleep driving. But you are still fading. You crank your radio up so loud that your ears hurt, but you are bound and determined to not fall asleep. Finally, FINALLY, you pull in your parents drive way. You step out of the car, grimace a bit because your feet still hurt. You shake your head quick to wake up as much as possiblle and put on your best fake smile. In the front door you walk. Man, if they only understood how tired you are. How are you going to get home, you barely made it here? You push that out of you mind and you soldier on. In the back room you hear you dad telling the famous family story. The one that makes everyone laugh.... Ooh crap, you did not think about that, you let your guard down, please don't laugh, please don't laugh.... To late, you start to bust a gut, good thing right... NOPE.... Your jaw goes slack and your eye lids droop alittle... At that moment your cousins comes up to you and the look in their eyes, pure shock. They must think you are having a stroke. You try to tell them that you are ok, it is just cataplexy, but nope....When this happens your can't really talk either. You here the jibberish coming out of your mouth and you start to panick. Your cousin looks like they are going to have a heart attack. Your heart starts pouding out of your chest, you have to get this under control. If you get to much more worked up you are going to hit the floor. Full body cataplexy is your biggest fear. You run full bore to the bathroom, shut and lock the door. You turn the light off and sit on the edge of the tub in silence, except for the occasional sob that you can't hold back. You told them it was to hard for you to do this. You told them you were to tired. They just said you have to try harder. They just said you have to man up. And now look, now look what happened. So, that is a day in life of a Narcoleptic with Cataplexy. Do you think that you could do that everyday? Do you think that you might come off a little curtly to people as you struggle to stay awake? Do you think that you might try to hide your emotions even if people think you are always tired? Do you think telling this person to "man up" or "soldier on" or "try harder' is really the answer? Instead of judging people based upon what you see, remember you never know what is really going on with them. All you know it is everything that they have to simply stand upright and sort of carry on a conversation with them. Narcolepsy is real and it touches every part of a person's life. Never pretend that you know everything that someone faces. Maybe, just maybe, give them the benefit of the doubt. Don't assume that they just need to sleep more, or work out more, or just need to suck it up. More than likely that is not really the case. It is kind of funny how things go in cycles. As I have blogged in the past my symptoms seem to cycle around. From day to day I don't really know what is going to hit me.
The last couple days to maybe a week my symptoms have not seem to cycle and you would think that is a good thing, but sadly is not. My current cycle is for me to get a nasty stomach ache when I crash. Being that I still do not have the proper meds I am crashing quite often. Really I always seem to teeter on the edge of being awake and being asleep. This kind of puts me in a rough spot. If I stop doing what ever is giving me enough stimuli to stay "awake" then I start to crash. So when I crash my stomach turns in nots. Needless to say I seem to cycle between fighting to stay awake and feeling like I am fighting to keep my stomach contents down. It does not matter if I eat or really do anything else. Once that stomach feeling kicks in I have one option, take a nap. The problem with the nap is that it is not like I am taking a 30 minute cat nap. Many of my naps are two to three hours long. I really am not a fan of of interrupting my day for two to three hours. On top of that if I don't wake up "naturally" then it does not work and my stomach is still in nots. Great fun! The bright side is that I know soon enough I will get the fun of dealing with a different symptoms for a while. Chin up right, could be worse, I could not wake up tomorrow. My family helps a very nice lady that lives only a couple blocks away. This lady has lost two husbands and has no blood children of her own. Her second husband a widower himself, passed away this year. They were married for over 20 years.
What really kills me about this woman is that it feels like the majority of people in her life don't want to help. She needs help, she struggles to just maneuver around her house. But she is a fighter, she wants to live on her own and she is going to make it happen. Those closest to her, those that you would think would help her always seem to have something going on. They always seem to be to busy to help her out. I really don't understand how you can call someone our family and when they desperately need help you decide you are to busy to help them. How can you essentially turn your back on those that need the most? For my family, obviously we have plenty of time, but we don't help because we simply have time. We help because it is the right thing to do. While this woman is not my family it almost feels like she is when we help her out. She is always interested in what my family is up to. She always asks about the body. If she sees the boys in the paper she keeps if for us. She treats us like family. This woman only wants to live on her own. She just wants to be in the place that she has called home for almost 50 years. My family will do everything in its power to help her stay in home as long as she can. If her family won't step up, we will be there for her. Not because we have to but because we want to. I wish there were more people in the world that are willing to do the right thing. I wish there were more people in the world that cared! The boys as my wife call them often blow my mind everyday. Their intelligence, drive, wisdom, good heartedness, everything about them makes me proud.
In all reality it is just a few short months away and Anthony will be in college. He will be starting his adult life. But there is more to him than that. So much more. Yesterday I blogged about his sportsmanship and how much he really cares about everyone. He is the Vice President of the National Honor Society, but he is not just there for the title. All year he has pushed and done his best to ensure that the group stays on task and is a group worth being in. He has been invited to play for the Turtle Creek Chamber Orchestra, a semi professional orchestra. He is a leader everything that he does. But many times he leads with actions not words. Aside from the typical teenage stuff that is bound to happen there is not much more that I can ask of him. You might think that Eric would find it hard to follow in his brother's footstep, but you would be wrong. Eric is blazing his own path. He is not afraid to be himself, a NERD! He owns it and he does not really care what anyone thinks about it. He is excelling in his academics... He is at least two years ahead in math and even that far ahead he is still not struggling. He is at least a year ahead in english. Even with that he is still very personable and yet still has time to do more things. He is a leader in the orchestra, many times he is the driver for the class. He is a leader in choir, he takes part in the regular choir, the treble choir (yes his voice is high enough to sing with the girls), and he is part of the cav choir (this is a choir to give those less fortunate students still sing). On top of that he is now taking on soccer. He is approaching soccer like he had done with everything else in his life, with wreckless abandonment. He is bound and determined to be successful and I have no doubt in my mind that he will be. Then there is Alex. He is following the massive shoes of both his brothers. Most teachers know the Funk family before he even steps foot in their class. But this does not deter him one bit.. Alex is blazing his own path. Just like his older brothers he is an overachiever, there is not a single subject that he not only loves but also excels in. But that is only a small part of him. Alex is also a leader in what ever he does. If you were to walk through the halls of his school with him, countless teaches and students will stop and talk to him. He is not done there though. Alex takes part in the Art, Just Say No, Mine Craft, and K Kids clubs. Alex just like his older brothers is not afraid of any challenge and I have no doubt that he will destroy any challenge put in his way, just like his older brothers. All three of my sons make me proud every day. All three of my sons provide me with all the reason that I need to fight everyday. They might not know it but besides their mother, there is nothing more important to me than them. Boys, I salute you, continue on the paths that you are now and my wife and I will be the most successful people in history! How many second chances does a person deserve?
I have given my father more second chances that probably any other person in my life. After he threw me into a wall and broke my back, I forgave him. Obviously I was not OK with it but I put it behind me. I gave him a second chance. My father skipped town days before I graduated highschool. I would have really thought he would have wanted to see his son graduate, but apparently what ever he had going on his life was more pressing. I put that behind me. I had the cops show up at my home in the middle of the night looking for my father. I was actually put in handcuffs because they thought I was my dad. I put that behind me. My father stopped returning my calls and attempts at communication when he lived states away. I put that behind me and started communicating with him again. My father blew off my oldest sons 17th birthday, you know his last as a kid. You would have thought that being that he had only attended one of his birthday before he would have wanted to attend. To me he hurt my kid, but once again I gave him another chance. My youngest son called him and asked him to go to his birthday. My dad said that he was not sure if he could attend but he would call him back and let him know. Again he hurt my kids... My wife tried to call and talk to him. She was attempting to help my father know how upset I was because I did not think it was a good idea for me to talk to him. He disrespected her by first of all not even knowing who she was and then by cussing at her. Now my dad once again wants to put the past behind us. He once again says he wants to be part of my sons' lives. I really want my boys to be able to have a relationship with him, but I am torn. How many times do I have to give him a second chance? Is it worth it to give him another chance? Is it worth it to give him another chance to hurt my family? My mind tells me no, my heart tells me yes.... I honestly don't know the correct answer.... It is very obvious to me that I am struggling lately. I am struggling with all of the curveballs that my life and Narcolepsy are throwing at me. In all reality I think that I have good reason to struggle, but I have to get out of my funk. So to start that process I thought I should create a list of things that I am greatful for.
With that in mind, let the list begin: 1. I am greatful for my wife 2. I am greatful for my sons and the responsible, respectful young men they are becoming 3. I am greatful for my animals, it is amazing how quick snuggle or even lick can turn your mood around 4. I am greatful for my sister, she is the one person that has been in my as far back as I can remember 5. I am greatful for my extended family, while there are some days they drive me nuts, I love them none the less 6. I am greatful that I was able to get my Bachelors degree, not necessarily for the degree itself but for the chance to show my children that getting their education is very important 7. I am greatful that I still have my mind, many days it does not work the way I want it to, it is still there 8. I am greatful that I have a chance to fight Narcolepsy everyday, not everyone can say that I think that is a pretty solid list. One thing I hope everyone notices, there is nothing of monetary value on my list. The things that mean the most to me have no real monetary value. As hard as things may be, I am still greatful that I wake up every day. No matter how hard things might get, I will not quit trying, because quit is not in my vocabulary. If you are feeling down and are having a rough day, take a minute to write down, (you need to write or type your list, it can not be a mental list) the things you are thankful for. That list won't fix everything, but it will help you remember why you are fighting. It will help you refocus your efforts and put you back on the right path. It is amazing how quickly and how drastically your wants in life can change.
Prior to my diagnosis I wanted to be able to provide my family with enough money so that we could live comfortably. Where we had enough money to have want we needed and little extra but nothing crazy. After my diagnosis my wants changed quite a bit. Instead of worrying about financial stability my most pressing want was to get back to what ever "normal" was. I wanted to get back to a point where I was not always tired. I wanted to get back to a point where weird crap was not happening to me. Six months after my diagnosis my wants changed again. Approximately six months after my diagnosis I had to stop driving. I was no longer able to stay awake in a car. For me to get to and from work I need a ride. I had to mess with my families schedule at one point and eventually had to pay someone to take me to work. I was no longer worried about "normal", now I wanted to be able to drive again. I wanted to be able to stay self sufficient. Late last year my wants changed again. I was no longer able to work, so driving became less of a worry. I had given up on getting back to "normal" because I knew that was never going to happen. I just wanted to be able to sit down for 30 minutes and watch a TV show with my family without having to do something else. I wanted to be able to just watch TV and stay awake. At the beginning of this year my wants changed again. I was no longer able to get my medications and the thought of being able to simply sit and watch TV did not seem like a possibility. Without my medication I had lost the drive to move. I had lost the energy to push and keep myself continually moving. My wants changed to wanting to be able to push through and move again. I actually wanted to have the sore feet and legs that came with my movement. Even though I was sore I felt alive when I was moving. My wants have changed again. Right now getting back to moving is not happening any time soon because my foot is messed up. Driving is about as far away from my wish list as it can get. Even trying to just watch a TV show is way down my list. I just want to be able to go some where, any where, and not feel like a weirdo. If I go out now I know my head will wobble, I know I will limp because of my foot, I know that my other leg will buckle, and I know that I will simply struggle to stay awake because I can not move fast enough. Now I just want to be able to do something, anything without feeling like there is something wrong with me. It is just crazy how drastically my wants have changed in less than 2 years. It is just crazy how much Narcolepsy has turned my life upside down. On the flip side I know I will wake up in the morning. I know that I will have another chance to fight. I know that tomorrow will be a better day. I gained a entirely new level of respect for my oldest son Anthony today.
Anthony is on the varsity tennis team and is the teams single four player. Today his team had a home tennis match against Janesville Craig. My wife, my youngest son, and I (head wobbles and tablet in hand) were able to watch Anthony play. The first thing that we noticed when Anthony was warming up for the match was that he was playing against another athlete that had Down Syndrome. Even in the warm up I was impressed with Anthony. He was encouraging his opponent and making sure that they both got a good warm up. Once the game started I was again impressed with Anthony. He was not giving his opponent any points but he also was not playing to embarrass him either. When his opponent did something good he congratulated him and when he made an error he tried to be encouraging. It was obvious that Anthony had more skill than his opponent but he was giving him all the respect in the world. Anthony did win the match but he kind of hung his head low. I asked him what was wrong and he said that it did not feel good beating his opponent. There was malice or over confidence in his voice, he truly did not feel good about how he won. It may be wrong, but that melted my heart. I am proud to know that he respected his opponent no matter what. I am proud to know that even though he never attempted to overshadow his opponent or even make him look bad he still did not feel good about the win. I am proud to know that he did not complain about playing him, he simply respected him. To mean that is a sign of a very mature young man. To mean that is a sign of a young man that has his head screwed on straight. His actions today make me feel like my wife and I raised him right. Today is one of those days that you feel proud to be a parent. Today I am extremely proud of Anthony! For my 100th blog I decided to post one fact for every 10 blogs.
1 - My one true love is my wife 2 - I have two degrees; an Associate’s and Bachelor’s Degree in business 3 - My three boys make me proud every day 4 - I have lost close to 100 pounds four times in my life 5 - I have lived in five states (WI, MI, TN, CA, AZ) 6 - As a family we have vacationed to six states (IL, D.C., MN, IA, PA, MI) 7 - So far I have seen seven specialists in my journey with Narcolepsy; (2 Pulmonologists, 1 Cardiologist, 4 Neurologists) 8 - Eight of my favorite movies are; Braveheart, Mask (starring Cher), Little Shop Of Horrors, Big Trouble In Little China, Marley And Me (you can only watch it once), Rocky Horror Picture Show, Lord Of The Rings Trilogy, Hobbit Trilogy 9 - Nine of my favorite songs; Turn The Page, Every Rose Has A Thorn, It Is So Hard To Say Goodbye To Yesterday, I Believe I Can Fly, The Christmas Shoe, What Are Words, Cats In The Cradle, Thunder Rolls, Gangster’s Paradise 10 - Ten of my favorite athletes; Barry Sanders, Cecil Fielder, Calvin Johnson, Mel Gray, Chris Spielman, Mark Mcgwire, Ben Wallace, Vinnie (the microwave) Johnson, Dennis (the worm) Rodman, Sterling Sharp My frustration level with the medical and insurance industries keeps growing and growing.
Today my doctors office contacted me and asked if we had any more information on my denial for Xyrem. The first thing that struck me as odd is the my doctor’s office did not have any information on the denial even though they are the ones that wrote the prescription for me. The official denial only went to me and the specialty pharmacy that would fill the prescription. None the less, I still looked for the information that my doctor’s office requested. To my surprise when I reviewed my denial letter there was no specific reasoning on why I was denied. There was only a reference to some random administrative code. Me being me I decided I would go find out what the code referenced or meant. Well the code was fairly specific in what the denial reason might be. It actually outlined 12 different reasons that could be used. Problem is neither my letter or the code defined what the actual reason was. Explain to me how in the world you are going to win an appeal if you don’t know specifically why you were denied. I took my research once step further and decided to see if anyone in Wisconsin using state insurance had ever been approved to use Xyrem. I was not able to find that but I was able to locate the criteria that they state had set forth for their approval process. That criteria was just as silly as the administrative code. Now when looking over their criteria I only reviewed the section for Narcolepsy with Cataplexy as that is my diagnosis. One of the criteria was that you had to have tried Provigil or Nuvigil and it had to have failed. Funny thing is that neither of those drugs are used to treat Cataplexy, at least to the best of my knowledge. They are used to treat EDS. So even if they “failed” in treating your EDS they really have no bearing on your Cataplexy. Then specifically in terms of me, the state has yet to approve my prescription for Provigil, (actually the generic form but the same thing). So if I have to “fail” at using it, how am I going to achieve that failure if they won’t approve the prescription. Needless to say my frustration level with my insurance is getting higher and higher by the day. It seems that no matter what my family or my doctor tries they just keep denying and denying everything. The state does not want to approve my disability claim and they don’t want to give me the medication that give me the best shot at achieving what ever my new “normal” is. UGGGHHHHH |