It seems like just yesterday that my oldest son was born. At the same time it feels like he has always been here, he has always been part of my life.
Many people over the years have asked me why I had children. Some were asking because they wanted to have children of their own and some were asking because they personally never wanted children. My standard answer was always, "kids allow me to be a kid longer", but that really only tells a very small part of the story. There is the excitement and pride that go along with all of the firsts. Even the small firsts are great. That first time he sat up on his own, the first time he said dad, his first day of school. All of them brought great joy and pride because I could say that is my own flesh and blood. I could say that I made that little guy. As he got older the first got bigger and joy and pride just increased. Seeing him interact with his brothers for the first time. Becoming the brother that both of his brother's looked up to and not just because he was older. His brothers look at him with pride because of the things that he has done. When he moved on from elementary school to middle school was another moment of pride. He was no longer a little kid and he was starting to become a young man. The funny thing is that when he moved to the middle school we had a lot of issues with the school because he needed to be challenged academically. Even though those challenges sucked it still made me feel good because my son was challenging the school district to provide him with what he needed. He was already a trail blazer and he did not even know it. The firsts have continued through high school and probably won't stop from there. But the biggest first I am looking for is this Saturday, he will be the first of my sons to graduate high school. He is going to walk across that stage holding his head high knowing that he did his best. And his best is pretty darn good, (if I do say so myself). He will be graduating in the top five percent of his class. What makes that even more significant is he is going to do that even with taking some of the highest level college math classes there are. He might have gotten that perfect 4.0 if he had taken easier classes but to me I am more proud of what he has done because he has challenged himself and succeeded the entire way. He was also a trailblazer outside of academics. He was the vice president of the National Honor Society, principal violinist in the orchestra, went to nationals for a FBLA competition.... The list goes on... What ever he set his mind to he excelled at. But that is not what I am most proud of.... I am most proud of the man that he has become. He is a very caring person and has put others first multiple times because that was the right thing to do. He is the type of person that will stop what he is doing to help others because they need help. He has become the man that I had always hoped he would be. Above everything else he has been a great role model for both of his brothers. He makes me proud every day. Those that know me well, know that on Saturday as he walks across that stage, I will be crying like a baby and I don't care because they will be tears of joy. The best part of all of this.... He is not done, he is moving on to college to achieve some more firsts for the family. The best part is, his brothers are not only following in his footsteps but they are also blazing their own paths. They are not sitting in his shadow, they both make me proud on a daily basis, just like he does. Just yesterday all three of my sons were born. I struggle to remember what is like to not have my boys in my life. My oldest son has already become a man and his brothers are closely behind him. So why have children.... My three boys are the best things that I have ever done or probably will ever do. Aside from marrying my wife they are the three best choices I have ever made. On top of that narcolepsy cannot take these things from me. No matter how bad I might feel all I have to do is look at my boys and I know I did something good! No matter how bad my symptoms might get, they cannot take my boys from me!
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So today I finally hit the wall that I knew was coming.
Normally on Memorial Day we get up early and get to our spot to watch the parade close to 7am. We get their early to make sure we get our spot and to hold enough room for the remainder of the family. Today my wife tried to get me up when normally have already left to go. I simply could not wake up. I knew I needed to be awake and get going but I could not make it happen. The worst part was my eyes. I simply could not force my eyes open no matter how hard I tried. My oldest son described it as when you have sleep in your eyes or you have a could and you have goop keeping them from opening. Expect there was no sleep or goop. Intially I was only able to get one eyelid to move and I mean move. Heck with getting my eye open, I could not get my eye lids to move. I could get it to quiver a bit but nothing. The other eye, nothing, that sucker was even more stubborn. Eventually I was finally able to get my one eyelid open enough I could see light, but I could not control my eye. I could not actually see anything around me other than I could see light. I was "awake" because I was talking to my boys, but I could not make my eyes work. Eventually the boys convinced our dog to lick my face, not that it takes much convincing with her she loves giving kisses. After she kissed my face I was able to get both eyelids to move but I still was not able to see anything other than light. I still did not have control of my eyes, I was just simply able to see light out of both eyes. Finally I was able to get both eyes open and I was able to control my eyes, but I felt like I had been run over by a tank. Every part of my body hurt and ached. But hey I was awake. Once up I had a great day with the family. I played sports before the parade, watched the parade, and then we had a good picnic. Of course there was not much down time for me. As I was already pretty much on my last drop of energy there was no sitting down. By the end of the day I had over 30,000 steps and my entire body hurt again. Even the fan air, which felt good to cool me off, hurt a little. As I beat the snot out my feet, the fan air made my bad foot burn. I am pretty sure that I have restarted the process of hitting the wall again, I just don't know when it will hit me the next time. I just wish that I could have one day where I did not have to run around like a mad man to keep some semblance of awake. I just wish I could have one day where I can sit down and relax with the family. I just wish I could have one day where I can sit, not reclined, and eat with out rocking back and forth. On the bright side, I had a good day and I got to spend quality time with my family. I am pretty sure when your heard your loved tell you that they had narcolepsy your first thought was, "What". Maybe you thought that they were kidding. Or possibly you though that, "No Way", you don't fall asleep while talking to me.
Well the first thing that you should know is that narcolepsy is nothing like main stream media makes it seem like. The Simpsons portrayal of narcolepsy is way off base. Simply put do not look to what you see on TV to try and help you understand what your loved one is going through. The next thing that you should know is that your loved one is not faking. Narcolepsy is a very real thing, that can have a very real impact on someone's life. "Experts" say that to understand what it is to be a narcoleptic you need to stay up for 72 hours straight and THEN perform your daily tasks as if you had gotten normal sleep for the previous 3 days. Or a more straight forward example, thing back to the days when you crammed for school. You stayed up all night to study and then slogged through the next day. Now just multiply that by 3 and you have it. The next thing that you should know is that being tired/fatigued is just the tip of the iceberg. There are so many other things that narcolepsy can affect. The symptoms can range from something as simply as slowed healing to something as major as losing complete muscle control and crumbling to the ground. The worst part is that your loved one never knows what symptoms will hit them on any given day. Below is a partial list of things that your loved one can be facing on a daily basis: - Eccessive Daytime Sleepiness - Cataplexy - lose of muscle control; can be as minor as drooping jaw and as major as a complete collapse - Temperature Control - their bodies can struggle trying to maintain a constant body temperature - Pain - many narcoleptics get random shooting pains with no explination - Hallucinations - it is possible for your loved ones to believe that they felt, saw, heard, or smelled things that are not actually there - Loss of Memory - as you organize your memories when you sleep many narcoleptics have very scattered memory - Concentration - many narcoleptics are diagnosed as ADHD because they struggle concentrating - Sleep Paralysis - your loved one might wake up but not be able to move The list goes on, there is very little in a person's life that narcolepsy does not affect. The reason for all of this mayhem is because narcolepsy messes with a person's awake sleep cycles. Additionally narcoleptics go into REM very quickly not allowing them to achieve restorative sleep. Essentially narcolepsy forces a person to live in a constant state of sleep deprivation. You know, a tactic used to torture people! Your loved one is in a constant battle with their own body and mind 24/7. Yes their are treatments for narcolepsy but it is not curable. Their are two types of treatments, one is to try and trick the person's mind into thinking they are awake and the second is to try and force the person into restorative sleep. Unfortunately neither treatment is 100% effective and in many cases a narcoleptic person most go through countless different medications to try and get some form of relief. In many cases the relief is only minor. Of course those medications come with their own set of issues and side affects. So the big question is, what can you do to help your loved ones? The biggest thing is to not belittle them or tell them they are lazy. The chances are that they are fighting harder than you know. Instead of pointing out what they are not doing focus on the things they are doing. Help them realize that they are still a productive person that has not lost their identity. The next biggest thing you can do is actually do some reasearch. Find out as much as you can about narcolepsy so that you can try to really understand what they are going through. Join some support groups so that you can see that they are not alone. Do as much as you can to become as knowledgeable as possible about narcolpesy. This will help your understand what they are going through and make it easier for you to help them out. Above all else never forget that they are still the same person that you always loved! They have not changed! Remember they are working hard everyday simply to stay awake. If they seem to be a little gruff or snippy one day it is probably not you, they are simply tired from their constant fight. They mean nothing negative towards you, they are doing their best! Sincerely, James Funk - a narcoleptic and narcolepsy advocate First of all I have to tip my hat to you. Helping a person with narcolepsy can be a very difficult thing. Their symptoms are always changing so you never know what is coming. On top of that many times they might forget about something, hallucinate about things, or simply sleep through them. In any case it sure does make it hard on you.
Being a person with narcolepsy I know that we are hard to deal with at times. But please keep in mind we are not trying to be a pain in the butt. There have been multiple times where my wife and I have had a conversation but I had no recollection of it. While this is hard on me it is even harder on my wife. She knows the conversation happened, she knows I was there, but I am looking at her like she is crazy. She has to try and figure out if I am play dumb or if I really have no clue what she is talking about. That is an impossible situation for her or any other caregiver. There are other times that I have hallucinate that things have happened. In these cases my wife has to try and help me realize that what I know is true is in fact fiction. I can not fathom how a caregiver can do this as it is a lose lose situation for them. If they tell the PWN that they are hallucinating they risk making them mad because they know it is true. If they try to go with the flow it is very possible that the PWN will be angry later if they figure out that you went along with a lie. What are you to do? Another tough situation for you as a caregiver is trying to help us PWNs with our new limitations. It is very difficult because you want to help the PWN but you don't want to step on their toes. If you allow the PWN to do what they want, they could hurt themselves or someone else doing things they should no longer do. On the other hand if you try to help the PWN out they may become angry at you for not allowing them to do something that they know they can do. Again what are you to do? The about situations don't take into account your PWN's memory, sleeping patterns, speech, cataplexy, etc.... When you are helping care for a PWN you have a litany of potential things to be worried about but you never know what you might face at any given time. You are always playing a guessing game and if you guess wrong your PWN could get angry with you very quickly. Again you are stuck between a rock and a hard place. How do you help but not anger your PWN? The best advice I can provide you is be patient wth your PWN. Understand that your PWN is even more frustrated than you are. They know what they could do in the not so recent past and now they are no longer able to do those things. Many days they are struggling with what they have lost. Other days they push themselves well beyond their means to prove that they can still do what they did in the past. Keep in mind that your PWN is not trying to hurt you in any ways. Many times they are just trying to be helpful. Many times they are just trying to prove to themselves that they have not lost their identities. To be a successful team both you and the PWN have to be patient with each other. You both have the same goals in mind; keep everyone safe, ensure that the PWN feels as good as possible, help the PWN recover as much of their lost abilities of possible. You are a team with an uphill battle, but a winnable battle. If you and your PWN work as a team, narcolpesy will have no power over you. It is very possible that you and your PWN will Forge an even closer relationship than you had prior to the diagnosis. Remember not to mourn what is lost, celebrate the new opportunities! The two of you can forge a new path together that can be even greater than anything that you could have done before. Sincerely, James Funk - PWN Dear People With Narcolepsy (PWN),
If you are anything like me it seems like yesterday that you heard three simple words, "You have narcolepsy". If you were like me you were relieved to finally know what was wrong. You thought that you were on your way to being normal again. Possibly you were more informed than me and you thought you knew what you were dealing with. You might have known that you would not reach your old normal again but you probably did not know just how much narcolepsy would affect your lives. No matter what your response was, the chances are that you were not completely prepared for what was to come. The chances are that you did not really know what was to come. Honestly how your responded does not matter at all. All of us deal with stress differently. All of us deal with the unknown differently. The only thing that matters is how you eventually respond to to that stress and unknown. I heard multiple times statements that started with, "Normally narcolepsy....". Let me tell you that there is no normal to narcolepsy. If someone tries to tell you that there is a normal with narcoplsy, in my opinion they are either uniformed or blind. There is nothing normal about narcolepsy. The reason for this is because it is not narcolepsy what you are really dealing with. Narcolepsy mess with your awake sleep cycle. In my opinion it slowly pushes you towards sleep deprevation. The more and more your sleep deficit grows, the worse your symptoms get. So, essentially, you are dealing with sleep deprivation on a daily basis. The worst part is that there is no way for you to catch up on the deficit because your awake sleep cycles are so messed up. This sleep deprivation is really what messes with your life so completely. There is a reason that sleep deprivation is used as torture. As your sleep deficit grows your body can react in countless different ways. Every person is different in this reaction. For some people their memory goes to pot, some can't focus, some can't stay awake, etc. This is but a small sampling of things that can happen. The next thing that you probably found out was that your symptoms seem to cycle. In my opinion the reason that this happens is because your body knows that you need sleep. It does everything it can to try and force you to sleep. The worst part is that when one thing does not work it moves on to another. For example one weak your body may ache all over, kind of like you have the flu on steriods. But you fight that pain because you refuse to sleep all day, so your body changes tactics. The next week it decides that you are going to have nasty migraines, because it knows that you are going to sleep to make the pain go away. You never know what symptoms you might have on an given day. As your deficit continues to grow you start to have new limitations that you never had before. For some they can no longer cook for themselves because they lose track of time and are afraid that they might burn the house down. Maybe you can no longer drive because you can not stay awake in a car. Maybe you have to stop working because it is no longer safe for you to work. When you reach the point of seeing major limitations you are probably starting feel pretty bad. You are starting to question what happened to the old you. I know I did. This is when the true you comes out. Narcolepsy is nasty disease, it uses your own body to play tricks on you and try to take away you ability to control your own self. BUT, you can and will find a wake to over come. You will find that while the disease may close doors on you it will also open new ones. As nasty as narcolepsy is, it is no match for you. So what if you can no longer work. That does not make you any less of a person. In my opinion that actually makes you a stronger person. How? Well it takes a very strong person to acknowledge their limitations and face them head on. It takes a strong person to admit to themselves that they are no longer able to do something. It takes an even stronger person to admit it to others. Well when you step up and tell your loved ones that it is no longer safe for you to work, you have proven strong than most people than you know. Not only did you admit to yourself your own limitations but you also put it out there in the open. It takes a much stronger person to stand up to those that question you, than to do what they think you can do when you know you can not do it. How about those doors I talked about? Obviously if you can no longer work, that is a pretty big door that has just been slammed in your face. But, it opens another door that allows you to spend more time with your family. It opens another door for you to reach out and help others figure out how to manage their symptoms. It might even provide you the opportunity to delve into something artistic that you always wanted to do. Narcolepsy might close doors that society say are the most important but ultimately society is wrong. What is important is you, not what do. I can no lie, there are tough days. But no matter how tough they are, you are still you. You are still a parent, sibling, significant other, etc. You are still that silly happy go luck person. You are that person that everyone goes to for random useless knowledge. But now you are actually a strong you than you had ever been before. In my opinion narcolepsy only makes you stronger. Anyone that can fight their own body 24/7 and live to tell about it is a strong person. Anyone that can push through the fatigue, pain, hallucinations, night terrors, cataplexy, etc has nothing to prove to anyone. If anyone questions your toughness they are simply trying to make themselves feel better about themselves because they know they could not walk one day in your shoes none the less your entire life. Narcolepsy is not a death sentance! Narcolepsy does not define you! Narcolepsy makes you stronger! Narcolepsy let's you into a small elite group of people that are some of the strongest in the world. Always remember no matter how bad your day might be, tomorrow will be a better day! Tomorrow will provide you with another opportunity to kick narcolepsy's butt! You will be even stronger tomorrow! Sincerely, James Funk - your friendly narcolepsy guide :) This evening should have been a very good day.
Both of my oldest sons were playing in an orchestra concert together. It was the last concert for my oldest son as he is graduating next week. Also it was the last concert for the two of them to play together. To top it all off my oldest son was give the "National School Orchestra Award", this award is the top award that can be given to a member of a schools orchestra in high school. To be honest I had to hold back tears because I was very proud, that and I am a big softy. You would think being able to see my children perform together, see my son recieve a pretty cool honor, that I would be in a good mood. But alas there was another member of the audience that just worked my nerves from the moment that they arived. Unfortunately the person continued to work my nerves multiple times through out the concert. She did this by a very simple means, the women kept looking back and glaring at me. Now she was glaring at me because the floor underneath me was squeaking. You know the wood floor in a high school gym. I challenge anyone to find a significant spot on an old wood school gym floor. I know some are wondering, why was the floor squeaking. Well, I really have two options to stay awake, I can either jog in place or I can use my tablet. I prefer not to use my tablet because I really am only partially paying attention to what is going on. If I break my attention from the tablet then I quickly start to fade. So today I jogged. Now I did not want to jog. As summer is starting to set in the temperature is starting to rise and the humidity is up. Now the temperatures are not really high my body is not quite acclimated to them yet. On top of that we were in a gym with lots of people so it was quite sticky. So no, I did not want to jog, but I wanted to be able to pay attention to what my children were doing. So this women, in her infinite wisdom, kept glaring at me because the floor was squeaking under my feet. I was doing my best to stay off the most noisy spots, but I was not always successful. If I were to hit one of the noisy spots the women would glare back at me until I find a more quite spot. A couple times I tried to lean on the bars on the side of bleachers but I was quickly fading. It was not an option, so I went back to jogging. It is not like the floor was loud enough to over power the orchestra it was just something that you could hear. I would think that it was obvious that I did not want to jog in a hot gym. You know as a good chunk of the audience was using their programs to fan themselves. But that did not matter to this women. If the floor was ever to loud for her, she would make sure to let me know her displeasure. I honestly want to walk up to the women and make a big scene so that others could know how big of a goober she was being. But I did not want to rune my children's day. So instead I swallowed my pride and did my best to stay off of most noise parts of the floor. If I hit a loud spot I would immediately move, as to not offend someone by trying to stay awake. Ultimately I got over myself, but I just wish that people would get over themselves and understand that everything in the world is not about them. That everyone is not out to get them. I still got to enjoy my son's day. I just imagined making the person this person feel the way she was making me feel. In the end, I know I was doing the right things. In the end, I ultimately was able to overcome narcolepsy and be part of my kids lives. Tomorrow will be a better day. At least I know that I will wake up tomorrow and get the chance to fight again. I, like many other people have complained about how difficult it is to get aid. Aid can be getting approved for disability, help getting food, help paying bills etc. Many times you will hear people make the statement that it is easy for those that don't deserve aid to get it but when those that do need it they struggle. What does that statement mean? How does it apply to someone getting aid.
Well my take on that statement is kind of complex. On the surface you could say that undeserving people could be someone that continues to have children so that they can increase their aid from the state. Or maybe you could say that this is in reference to someone that simply does not want to work that applies for disability and receives it. But how do we know these people don't deserve the aid they recieved. Let's look at the person that continues to have children to get more and more aid. How do we know that this person does not deserve the aid they get? Well in some cases the person will tell actually tell you that they are having more and more kids so they don't have to work. In that case it is fair to say that the parent in question does not deserve aid, but what about those children. No matter the mistakes that the parent makes, the child still deserves a stable home, a roof over their head, clothes, food, education, etc. As much as their parent is gaming the system they children deserve the best life possible. So as much as the parent may not deserve the aid personally their family deserves it. Today, I ran into the other example. I ran into a person that has applied multiple times to get disabiility. The person's most disabling issue is her weight, I know this because she has told other people that. This person actually made the statement, "How am I supposed to work when I need half my knee replaced, I refuse to go under the knife for that". So potentially the second disabling issue is the knee but yet they refuses to fix it. This person's biggest complaint about money is that they don't have enough money to get more tatoos. But is this person in the wrong? Are they not deserving of receiving aid? I had another person tell me that they personally know multiple people that recieve disability because they are addicted to drugs. Yes addiction is a real thing, it is a very difficult thing to kick. But the person has to decide that they want to kick it or not matter what they do they will not kick it. So, do these people deserve the aid that they get? I think the answer to these questions is, we don't really know. We will never know these people's complete stories. We will never know what really ails them or how badly it affects them. So what is the answer then? How do we fix the systems. We all know that people game the system. Even if we do personally know a person that does this, simple statistics tell us there are at least some untruthful people. But that is not the answer to this problem, that is just another symptom. In my opinion the way to solve this problem is to look parents. My generation or the generation after me have lost something. Something that was ingrained into my parent's parents. They have lost the drive to work hard. They feel that they are entitled to everything and they are not willing to work for anything. Think about this. My grandparents generation fought for everything that they did. If you wanted something you had to work for it. In many cases if you wanted milk, you had to help milk the cows. If you wanted eggs, well you better help collect them daily. If you wanted meat, you better help the family take care of the herd or the pigs. Nothing came easy. If you wanted an education you better be willing to burn the candle on both ends because even if you went to school you were still expected to help on the farm. In many cases you also had to walk to school because everyone was to busy to take you. This generation knew nothing but hard work. They would do everything in their power to work for what they needed and expected nothing. This generations of kids things started to change a little. They still had to work very hard for things but society was starting to change. Things were starting to be a little easy. In my opinion that really started the down turn of concept of hard work. This change also affected their parenting. Their parents expected them to do what needed to be done with no compaining. But as their lives changed they expected less of their children. Many of them changed from a parenting style of expectations and started to coddle. They did this because they did not want their children to have to fight as hard they did. They did not want their children to have it hard. But I think this is a fatal flaw.... Because of that parenting style, my generation of parents is more worried about being their kids friends then their parents. These parents don't hold their kids responsible for anything because it might make them mad. They might no longer want to be their friend. Instead of ensuring our kids do the work to get good grades, the parent blame the schools. The parents barter deals with teachers to give their kids second, third, forth chances. So instead of working hard kids know that there will always be a safety net somewhere to catch them. How does this apply to the original question of aid? Well it is not a matter of does someone deserve or not deserve the aid, the questions is have they done everything in their power first? Have these peope exhausted all other avenues before they went he route of aid? In my opinion those "non deserving" people probably have not. They have not because as of a society we have taught them that they do not have work or try hard. We have taught them that someone will always fix their issues. Because of that the people that put every ounce of their blood, sweat, and tears into their life before asking for aid get rejected. They are judged negatively because they have shown that they "can" provide for themselves, they don't need aid. In that judgement, it is assumed that they are the "typical aid seeker" and they don't need help. All because they did the work previously. In my opinion the fix for this is unfortunately a long road. Parents need to step up and actually be parents. They need to stop trying to be their kids friends and actually be their parents. Some times this is hard, but if a parent skips on this work we will continue to make it harder and harder for those that try to do the right thing. Instead of coddling our children we need to set expectation from a young age and then hold our children to those expectations. We can teach them, guide them, and help them but we can not do the work for them. We need to provide those expectations and when they are not achieved their has to be consequences. While my wife and I are far from perfect parents so far I think we are raising some great kids. This started as young as when they first started crawling. If your child looks back at you multiple times to see if you are watching, they know what they are doing is bad. If you ignore those bad behaviors you are actually teaching bad behaviors. You can not just brush it aside and say, "oh isn't that cute, they are just a baby". In my opinion if you continue to provide expectations on those little things you will won't have to worry about real big things. Why? Because you children understand your expectations and know if they break the rules there are negative consequences. They also know that even small things have consequences and they don't want to find out what will happen if they do something big. It seems simple and silly, but at least for our family it has worked. Our children actually tell us about how other children act poorly. They tells us how they dislike it. They are upset when their teachers have to deal with behavior issues instead of teaching them. In many cases they relish doing the work because it makes them better. It helps them become the men they want to be. It helps them avoid being like those kids that act out all the time. So my short answer, if we want to make it so those that need aid can get it, we need to start being parents again instead of being our children's friends. Last year I had the pleasure of hearing a letter than someone's child wrote to their chronic illness. So I thought that I should write a letter to narcolepsy. So here it goes...
Dear Narcolepsy, When I first heard of you I was relieved. I was given hope that with some medications you would have no hold over my life. I ignorantly believed that you were no big deal. I ignorantly thought that I could beat you with little to no effort. Boy was I wrong! I tried some medications like my doctor suggested, but they did not seem to work. In actuality my symptoms seemed to get worse. I tried more medications and yet again no improvement. You were proving to be quite the adversary. An adversary I was woefully under prepared for. Actual you proved to be an adversary that many doctors were woefully under prepared for. You completely turned my life upside down within months. Even though I did everything that my doctor's told me to do and everything within my power to fight you I seem to keep losing ground. First I lost the ability to drive. Then I started to lose the ability to concentrate. Then things really started to get nasty. You took the gloves off and again I was not ready for you. You threw one mighty right hook and you knocked me down. That blow took away my ability to provide my family the financial means it needed. That blow started to eat away at my memory. That blow started to eat away at what I thought was me. I allowed that blow to not only knock me down but almost count me out. I could hear the ref counting up, he was getting way to close for a ten count. But then I turned the tables on you. See, you forgot that no matter how strong you might be, that no matter how hard you hit me, I would not give up. I stopped the ref from counting and I stood toe to toe with you once again. I threw my gloves off and told you to bring it on. Yes, you have taken many things from me. Yes, you have changed my life in ways that I could never imagine. Yes you have confused my doctors. BUT, you never broke me. No matter how many times you took me down, I stood back up again. No matter how many tricks you had in your hat, I still stood my ground. I might do some things slower these days. I might have to be very careful at times when I walk. BUT, I will NEVER bow to your power. In fact, I have grown because of you. While I might not be able to do the things that I did in the past, I can now do newer things, better things. I know have the power to help others. I now have the ability to be a bigger part in my children's lives. My writing abilities have probably grown ten fold. No matter how hard you have tried, you have not been able to break me. No matter how many times you knock me down, I will get back up. Next time you decide to pick on someone, you better make sure that you are as strong as you think you are. But let me tell you now, you do not have the power to break anyone, because you cannot change who someone is. You do not have the ability to take anyone's identity away from them. No matter how hard you try you can not change me! I am still a hard worker, in many cases I work even harder now because I will not be beaten by you. I am still a silly guy. I am still a father, a husband, a good man. You can not take those things from me. Good try narcolepsy, but you have not won this war and matter of fact you will never win this war. You will never win because quit is not in my vocabulary. You will never win because I will not allow you to. No matter how hard you push, I will push back harder! No matter how many tricks you try to use, I will always have a counter. Narcolepsy, also be forewarned. I have made it my life purpose to help others overcome you. If I have anything to do about it, I will not allow you to beat anyone! Sincerely, James Funk - narcolepsy's kryptonite I am back! I am back to trying to blog on a daily basis.
We all like facebook, blogs, and the Internet in general. They are all great tools to keep in touch with others, keep up to date on information, and in many cases be entertained. On the other hand it is good to take a break for a bit, to distance ourselves from all of those distant external forces and just work on ourselves. While all of these things keep us in the know there is always drama. There is always something going on. Will all that extra stuff going on it can be hard to focus on our own lives. It can be hard to seperate our own lives from what is going on in everyone else's lives. On a personal note, I just needed a break! :) So back to the daily grind, or bloggin, what ever you want to call it. :p My disability appeal has officially been submitted as of May 20th. Now the waiting game begins again. To the best of my knowledge I am looking at another four to six month waiting window, so the fun begins. My income is officially caput, my short term disability ran out last week. My eldest son is graduating from high school next month, we have a college orientation scheduled in July, and then he is supposed to start college in Minnesota. All three boys will be off of school soon and then instead of feeding two for lunches we will be serving 5 for lunches. We have officially reached the point of what do we pay and what don't we pay... But if my life has taught me anything, some how we will make it work. I don't know how yet, but we have to make it work. On the narcolepsy front I have only seen my new doctor once and he is already working my nerves. I found out that he documented that I may be exaggerating my cataplexy, (knee buckling). The funny thing is that he has only had me walk like 3 steps in house office and then turn around. As I had to turn I was focusing on my walking to no my knees did not buckle. If he simply watched me walk down the hall leaving his office he would have seen my knees buckle at least twice. Needless to say he will be watching me walk down the hall at my next appointment. I might even have my wife video me walking across my living room so he can see how bad it is. In terms of my foot, I am out of my walking boot and killing it again in steps. In a couple was that is good; the first is I am not glued to my chair as much and the second is that hopefully I will start to drop a couple pounds. The downside is that my foot is not 100% and I honestly don't think it will ever be. No matter how loose my shoes are tied I still put pressure on the nerve that is causing me issues. But Before I had major pain in my right foot, it pretty much ached all the time, so at a minimum I am back to where I started. Now I just have to get my fitness level back to where it was slowly enough as to ensure that I don't have a major setback with my foot. On a blog note, if you have any suggestions for future blogs leave me a comment. You would be surprised at how hard it can be sometimes coming up with new ideas to blog about. With that in mind any tips for things for me to personally blog about let me know. Remember tomorrow will be a better day. No matter what if you wake up tomorrow you get the chance to fight all over again, not everyone can say or do that. What happened to school sports?
When I was a kid there were only a couple things that matter in terms of school sports; having fun, learning/getting better at the sport, meeting new kids. Winning was always a plus but it was not a requirement. There were practices but they did interfere with a kids education. Education was always number one. How things have changed. Now if you are in a school sport you can expect to practice every day for at least two hours, unless of course you have a game and then it can be even longer. With this much time practicing and playing games it sure does make it real hard for a kid to challenge themselves in school. I me think about it, if you take a class that gives you an hour or two of homework a night, you can forget about a sport. Unless of course you want to forgo sleeping, which is not really an option. I understand the need for practice, it is how you get better and how you earn to work as a team. But that much practice makes it hard to do much of anything else. What ever happened to practicing every other day or maybe for less time? It is not like these kids are playing to make money, they are playing because they want to. On top of that grades are becoming less and less important. I actually went to an athletic code meeting where the athletic director told the kids Ds get degrees. REALLY! The most import thing for a kid in high school is to get a good education. Their chances of going pro are slim to none and their education is needed if they go pro or not. Now days a high school diploma is the equivalent of having no educaton. Even many entry level jobs are starting to require four year degrees. A high school diploma that you eked out is not going to do you much good. My guess is the push to get more practice and less educated is because of money. Even in high school the big sports are bringing more into the school. So the schools want to do everything in their power to make their teams win, because winning teams bring more fans and more fans equals more money. They are putting making money ahead of their students education. I know their are budget issues in every school but is putting their students education on the back burner really the answer? What is so wrong with going back to making sports a fun learning experience that does not take almost as much commitment and time as your actual education? What is so wrong with going back to making sure the kids have fun, learn the sport, meet new people, and get GOOD grades? We need to top lowering the grade requirements for sports and keep our kids education in the forefront instead of making the schools money! Why is a powerful little word! If it is used right it can help you immensely. If it is used the wrong way than it can tear you down.
The best way to use the word is to figure out how something tangible happen. By tangible I mean things that have an expination. For example if you are trying to figure out why something broke. For instance why did the screen break on your child's phone. It is perfectly acceptable to ask you child why the screen broke. You would expect answers like I dropped it, something fell on it, I sat on it, etc. The key for using the word why is that you should have some expected answers already in mind. You should be trying to figure out things that have an answer. Things that you can trace the steps back and figure out what went wrong. The worst way to use the word is in terms of your help. I say this because many times there is no answer to that little word. Many times no matter how many times you ask why, you can never get to the root of what went wrong. For instance take me. I have narcolepsy with cataplexy and cervical dystonia. Medically you can pinpont what caused the problems. Narcolepsy is caused by either a lack of orexin or orexin receptors. Doctors know this from research and because of that they know how to treat the disease to the best of the abilities. But when you start questioning why you have something beyond the medical sense things can go wrong very quickly. You start to question what you did wrong in your life. You start to question what you could have done differnetly. Some people even start to question their faith. When you question those things you can send your life in a tailspin because there is no way that you can truly answer those questions. Even if you think that you have an answer, there is no way that you can "fix" it because it has already happened in the past. Then when you can not "fix" things you start to beat yourself up over and over again because you have a daily reminder about what you feel that you did "wrong". Asking why you "got" some strange disease will not fix anything. It will only take you down a deep dark alley that you never want to enter. Instead of asking why, ask what new doors are now opened to you. Instead of asking why, focus on now, focus on what you can do moving forward. Instead of focusing on things that you can not "fix" and that more than likely really have no bearing on what is going on, focus on those newly opened doors. For instance many things have changed because of my diagnosis' but the things I focus on are my new oppportunites. Most notably my blog, previously I would have never blogged. Or all of the new friends that I have made. Or the people that I am able to help now. The why I have these things does not matter, just what I can do because of them! Well, I think something actually went ok for me in terms of medical stuff. I think that I finally have an answer for my foot issue.
While initially I was a bit taken back when I received the results of my MRI because it stated that essentially there was nothing wrong with me foot. I reacted a little prematurely. Forgive me if I tend to be a bit skeptical of doctors. Today I had my follow up. The doctor came in and went over the results of the MRI. Of course he told me that the MRI was clean. My wife and I went over that my foot was still having issues. We mentioned that many times within a couple minutes of walking the top of my foot will turn red. I also showed him specifically where I was having he most repeat pain. He took it all in stride and came over to examine my foot. He examined he portion of my foot that I showed him I was having issues and he had an answer. He told me that me and him have the same issue. We have a "bump" on our foot and there is a nerve that runs across that bump. He specially stated that he runs marathons and at the end of one it felt like he had broken his foot. But he had figured out a way to remedy it. He took his shoe off and showed me how it was laced much differently than the normal lacing. So, he took my shoe had me put it on to confirm the location and then he laced my shoes just like his were. He went on to say that essentially I had an inflamed nerve. Because of the repeated pressure from my shoes the inflamation was not going down. Actually the reason the boot hurt my foot was because it was replicating the pressure that my shoes put on my foot. So, he has me on a 6 day course of medication, with the option to do a second course to reduce the inflamation on the nerve. To my surprise I could tell the difference in my foot just putting my shoe on. Normally just the act of putting my shoe on hurts and it did not this time. Walking to the car I could already tell a difference. My foot is still sore but markedly better. I was even able to jog in place a little bit at my son's soccer game. By the end of the day my foot was sore, but it was more from use than my normal pain. I think this doctor is right on target with the issues and I can get moving again. Heck today I should break 15,000 steps for the first time in over a month. Hopefully I can get my activity level back up and drop some weight again. It won't help with my fatigue but it will make me feel a little better. Strange topic, I know, but hey cartoons are fun.
Cartoons have changed a lot since I was a kid. When I was a kid Saturday mornings were the best. That was when you got to watch all the best cartoons. Tom & Jerry, Road Runner, Bugs Bunny, The Flintstones, Heman, Thundercats, etc. These cartoons rocked. In today's standards they were not flashy, they did not have the same graphics as today's cartoons but they were entertaining. The funny thing is that these cartoons were just as violent as today's cartoons and TV ,but no one ever was worried they were to violent. Everyone knew that they were make believe and the violence in them was part of their charm. I mean, who does laugh when they see everyone of Wile E Coyote's plans fail on him. It is hard to not at least snicker when you see his face get flattened when he runs into a wall. Plus on top of that the cartoon stuck it to the bully. There is no doubt Wile E was a bully and he never came out ahead. Many of the cartoons also taught subtle lessons. In Heman, he was always kind of a disappointment to his father. He was not vocal enough, he could not fight good enough, and he was not the leader that his father wanted him to be. But when he turned into Heman, he was everything his father wanted plus some. If his father was able to really look at Heman than he would have known that he was his son, but he did not think his son was capable of doing those things. His father was judging the book by its cover. Take Cringer, he was a fraidy cat. Everything scared him and there was NO way that he could help Heman. But when he changed, he was a beast. He was Hemans best ally. Again you could not judge his book by its cover. The next age of cartoons things changed a little bit. Previously most cartoons were all seperte, aside from a couple, but the next wave of cartoons were more storylines. Think Teenage Mutant Ninja Turtles, there was a continue theme and a goal that each cartoon lead to. This was a break from, say Tom & Jerry, which was simply the same thing every time. Tom was trying to eat Jerry, simply put. These cartoons also had underlining themes, again in Teenage Mutant Ninja Turtles, the turtles were always the underdogs that had to fight against insurmountable odds, but they always prevailed. They just had to fight as a team and never give up. Aren't those traits that we want our children today to have? Work together and never giving up. Again even this era of cartoons were violent. The violence even transitioned to being more realistic, but no one worried that it was to violent. Everyone knew it was fake, we did not watch it to get enraged or give us a reason to something bad. We watched them because they were fun and no many cases we could relate to them. Cartoons started to change drastically after that. They started to become more adult oriented and less for the kids. They started to play in prime time and Saturday mornings were no longer prime cartoon watching time. Cartoons stopped focusing on being fun and humorous for our children and more for the adults. If kids wanted to watch the good cartoons they had to hope to get lucky on cartoon network or hope their parents had a means to get them copies of the good cartoons. What happened to Saturday morning cartoons? What happened to those fun cartoons that subtly taught us lessons without us even knowing it? Even as an adult I still love watching the old cartoons. My wife and I have done our best to expose our kids to the real cartoons, the ones that we watched. Honestly I don't think that there has been on cartoon that we have shown them that they don't like. I think society needs to go back to the simple cartoons that not only entertained but also taught good lessons. We slow down on making new adult cartoons and go back to the roots of cartoons. The last couple days it has been either cold or dreary. My mood has been kind of blah as I keep getting bad news in either my health or my health insurance. So today I have decided to share some funny family stories. I will be removing any names as to not embarrass anyone.
On to the first story. Two siblings are taking a shower together. Initially all seems ok until the siblings parents here a scream from the bathroom. The mother runs into the bathroom and what she sees and hears are enough to force her to turn around and leaving the bathroom telling her husband he has to take care of it. The husband goes into the bathroom to find one sibling still in the shower and he other standing out side of it. The sibling standing in the shower says, “I did not even know it was coming”. What is it you might ask, POOP! The kid pooped in the shower while showering with his sibling. Priceless! Story number two. Both parents and one of their children are out shopping at Gander Mountain. The child was some where near 10 years old. As they are leaving the child is walking very confidently and is taking big strides. The parents walk as stride after stride he closes in on a large pane of glass, next to the pane of glass was a sliding door. Then…. BOOOM! The kid walks into the pain of glass with out slowing down at all. Full stride right into the window. The kids goes crashing to the ground and of course dad can not help but laugh so hard he starts to cry. Story number three. A girlfriend and boyfriend decide to go to a local library that they had not been to. They take with them the boyfriend’s best friend. All three of them walk into the library and two of the three start holding hands. But not the girlfriend and boyfriend, the boyfriend and his best friend. Those two walk through the entire library while the very embarrassed girlfriend walks behind shaking her head. Story number four. One kid is cleaning out his father's rabbit cage so it can be sold. It was pretty full of rabbit poop. To clean it out he had to lean in all the way up to his waste. As he is literally waste deep inside the cage, he feels the door of the cage hit him in the tuckus and he falls into the rabbit poop. Of course he had to get revenge so he gets a scoop full of rabbit turds and tosses it at the two girls that closed the door on him. Of course he would go on to earn the nickname “The Snob” and he is the one that was pushed into rabbit turds. Final story. A husband was given a large bag of peppers. This was great as he really likes to make his own salsa. This bag had jalapeños, habeneros, bell, you name it, it had it. He starts to cut up the peppers because he wanted to make some salsa that day. In the middle of cutting his wife tells him that he has to get ready to go because they were going to be late. “No problem”, he tells his wife I just need to use the bathroom. Into the bathroom he goes and relieves himself, but then burning. He starts to feel quite the burning feeling, DOH, he forgot to wash the peppers off his hands before going to the bathroom. The try everything that they know to cool him to no evail. Finally they decide to phone a friend. The friend says milk, try milk. So into the bathroom comes the wife with a giant bowl of milk. The husband says, “what do you want me to do with that”. The wife says, “well honey I did not want to insult you!”. Believe it or not all of these stories are based in fact. It is not uncommon for these stories to be retold at most of the holiday events. When they are retold, even though we have all heard them many times, we all bust a gut. Every family has funny stories that are told over and over again. When you are having a bad day, try to remember them. Maybe even write them down. No matter what just allow yourself to let go and have a good laugh all over again. At least for a moment you will forget about what is ailing you. Holidays, what are they for? Is it all about the gifts that you get? Is it all about what you get to do?
As a kid, holidays really had very little meaning to me. There were countless holidays were my family really did nothing. In the big scheme of things, at least what I remember, they were just another day. Up until becoming an adult I was OK with that. I had not ever really expierenced much more than that so I did not feel I was missing out on anything. Things changed quite drastically when I met my wife. Her family did all of the holidays HUGE! I mean HUGE! They always made sure that all the kids, both parents, and grandma was able to attend every holiday. But it was just not a ok we are all together then split. In most cases it was a big deal. If it was a birthday, (basically a holiday but just for the person who's birthday it is) there was always a meal, cake and ice cream, and then significant hang out time. It was not uncommon for there to be multiple hours playing outside, maybe watching so tv, and sometimes games. Holidays were always a big deal. As I had my own children we kept the tradition going. There were gifts out he appropriate holidays but nothing was ever expected. Everyone was always appreciative for what they recieve no matter what. But it was not really about the gifts, it was about getting the family together. Doing things together, having fun as a family.... Obvsioulsy money is getting tighter and tighter these days, but the holidays have not changed. It is still about getting everyone together and having a good time. We don't have to do anything special, it is just the fact of getting everyone together and hanging out. Today we celebrated my mother in laws birthday, a day late, and it was like the majority of the holidays. Yes there were gifts, but that is not what the day was about. It was getting everyone together and making the best of what we had. For a small part of the day much of the family went and watched my oldest son play his violin for the location art walk. We had supper and cake and ice cream, and presents were opened but that was only a small part of the day. We talked about old funny family stories, hung out, and just acted like a family. It is kind of funny as we add more people to the family how they react to how we do holidays. Everyone kind of has the same response that I did when I first got around my wife's family. They are surprised at what we do and how much of a big deal each holiday is. But, the longer they are around the more the learn to appreciate what we do and wonder why their families don't do the same thing. I have said it many times before that you need to live in the now, don't focus on the future or the past. Focus on the now. My wife's family has done this forever with holidays. No matter what is going on they will put their all into the holidays. In the end no matter how hard things may seem to be, at least for a little bit, the holidays help temporarily forget the bad and focus on the positive. The lesson learned is don't pass on the holidays. If you don't have a bunch of extra money, that is no big deal. Instead of focusing on the monetary things focus on the family. Do something as a family, go to the park, watch a couple favorite family movies, play some games, etc... Just have fun. Push aside the bad and treat the day like it is a good day. Spend time with your family and have fun. Soon enough you will look forward to every holiday because you remember all the fun that you have had over the years celebrating them. So I have a new fun, my eyes are starting to twitch when I am tired.
It is the strangest feeling. I will just be sitting there and the corner of my eye will start to twitch. Some times the twitch will spread to my eye lid. It feels like the middle of my eye lid is moving but just in the very center of it. Once the twitching starts it does not stop until I take a nap. I am no really sure how this relates to narcolepsy but it only happens when I am really tired and crashing. I guess in the big scheme off thing it has no real bearing on me. I can still see just fine, it just feels funny. On other news my foot is still stupid. As I have been notified that it is not broken and I can stop using the boot according how my symptoms are I have stopped using it. I would rather have just foot pain instead of foot, hip, and knee pain. But because I don't have the boot I am trying to be a little more active. Nothing crazy because I know it is not a good thing to go from zero to 100 in a day. So far I have played volleyball in the front of my house with my boys and brother in law. Today I played out front with my wife. As I am stubborn as all get out, I am almost moving as quickly as I did in the past. I am running around like a yahoo because that is fun to me. Of course that does not come without some side affects. My foot is pretty much sore on every step that I take. The longer I play the stiffer my foot gets and the more it starts to hurt. Even when I am not standing on my foot to flex it forwards and backwards it hurts. Yesterday after walking for about 5 minutes the top portion of my foot that hurts had already turned red. My wife even took a side by side picture of my feet and there was no doubt that my bad foot was red in the location that is sore. I have also managed to find the spot on my foot that hurts to the touch. I showed my wife so that when I go to my appointment on Friday I don't forget. You know us narcoleptics can't seem to remember many things for to long. On the bright side at least I have enjoyed a couple days outside while running around, something that I really enjoy doing. Of course pretty much the moment I stop my stomach starts to do flips and flops because I am crashing, but I don't care. I will take the pain and crashing to do something that I enjoy. If nothing else I have gotten pretty good at grinning and bearing it lately. Now hopefully tomorrow it is a decent day. If it is I will run around like a yahoo as will be celebrating my mother in laws birthday. On family celebrations like that we always play outside. As long as the weather allows, I fully expect to have a throbing foot and a stupid stomach tomorrow. But I will enjoy getting there! Warning another rant is coming.
First of all, while I am sure the Patient Advocate Foundation have helped others, they are a complete waste of time for me. The first time they attempted to "help" my wife was on the phone for over four hours with them to get no further than we were before the phone call. Now my second experience with them as been even worse. The information that they provided me was false, I know this to be true as my insurance has provided me different information than they did. But honestly they are the least of my worries. On the advice of multiple people I contact my insurance to see why my prescriptions for Modafinal and Xyrem are being denied. To say that the answer I received made me mad is an understatement. As I am writing this my hands are shaking because what is going on is plain ridiculous. I understand I am on state insurance but the level of help they are providing me I would almost be better off having no insurance. So for my Xyrem prescription they sited multiple reasons for denying me: 1. I have limited pharmacy use on the insurance - umm if they want me to use my insurance more for medications you kind of have to approve me to use them instead of denying them 2. The billing address for Xyrem is out of state - yes the billing address for Xyrem is out of state. There is only one pharmacy that distributes it. They are not going to move the pharmacy to WI just so I can take the medication. On top of that while I know this is state insurance they have to know that it is not possible to get all of your medications for pharmacies in state at least in terms of speciality medication. 3. I do not have an approved prior authorization for Modafinal - which brings me to that denial.... I only retained two of the denial reasons for that, (I was starting to get a bit ticked off): 1. The state says that they have not recieved any of my sleep studies - now I know I talked to both my doctor and the pharmacy on this. My doctor stated he sent over two seperate prescriptions (different doses) along with multiple sleep studies. The pharmacy echoed that same thing. Where the information when it don't know. 2. I can not be approved for Modafinal if I am on any stimulants..... Umm - lots of people with Narcolepsy are on multiple forms of stimulants. For over a year I was on Modafinal, 2 stimulants, and Xyrem. But now because of me being on state insurance not happening. I am sure I could get the paperwork straightened out, but it does not really matter. I would have to stop taking the stimulate I am no while they worked through their approval process. Being that the process will take a month at a minimum, probably more, I would have to be on no medications until it was approved, IF they approved it. But I would only be allowed to take it and only half of what I was on in the past. So let's say I did that and got the approval for Modafinal to fulfill the Xyrem requirements, it still would not matter because the billing address would still be out of state. So my options are half of my previously prescribed Modafinal or one stimulant. Either way I am WAY short of the meds that I was on in the past. Even on those meds I was not great but I was 100 times better than I am now. I think I should go sit in their stupid office, swaying back and forth, struggling to keep my eyes open with a sign on me. The sign would say, "They don't think I need medication, what do you think???" I would probably be better off not having the insurance in terms of my Narcolepsy medications because the manufactures have programs to help the uninsured, but if you have insurance nothing............ I am so stinking angry! I honestly have not been quite this mad in a long time. I would say the good news is that anger keeps me awake, but I need a nap. All of this crap with insurance is taking its toll on me and my fatigue is really ratcheting up lately. So I need nap number two today if I have any shot of being semi awake when the kids get home, but nope I am to fired up to sleep! So I got the results of my MRI today. You would think that would be a good thing.
But alas it is not. My foot is starting to resemble me getting treatment for narcolepsy. The initial diagnosis I was given said I had some arthritis and bones spurs beginning. The second diagnosis was potentially a stress fracture. Now it is.... who knows what. According to the doctor, via email, the MRI did not show any breaks. His advice is to stop using my walking boot according to how my symptoms are going. On Monday we will discuss things more... Funny thing is that the boot causes me more pain than with out it. With the boot I get pain like someone is drilling through my foot. With the boot both my knees hurt. With the boot my right hip hurts. With out the boot just my foot hurts.... So, less hurt with out the boot, with the boot more hurt. So I took the boot off. The problem is I have officially gotten no further than I was before I went to the the doctor. My foot still hurts... I guess at least in theory I can't do any damage to my foot as there is nothing visible on either an x-ray or MRI. But there is something wrong with my foot. I am not hallucinating the pain. As my wife likes to remind me you can see when I am in pain just by looking at my face. It hurts... Plus there is no denying that the top of foot has some swelling and is nearly almost always red where I have the most pain. So where do I go now???? I do have a follow up appointment on Monday, but I don't foresee much coming out of it. I guess on the bright side I can slowly go back to moving again. It will hurt but I can start working on getting rid of my every growing gut. It would be nice if I had one medical thing that was normal or just somewhat easy to figure out. It is not a good thing to be the difficult one when it comes to medical issues. Before I begin this blog I must confess that I might be a bit biased on this subject.
Last night while "watching" a television show with my wife there was a couple that had a baby. Near the end of the show it was implied that the father of the child had no clue what to do and that the baby might be better off with the mother. Interestingly enough the mother had actually dropped the child off at the father's doorstep and then left before he opened the door. Honestly the specifics of what happened are really not important. The thing that rubbed me wrong was the implication that the father was clueless and the mother knew everything even though both of them were first time parents. This seems to be a common thread in main stream society. Fathers know very little and mothers know it all. So I think I need to debunk some of the myths about fathers. How many times have you heard or possibly said to a mother, "Is their dad going to babysit the kids tonight?" Why is it that when a mother is taking care of her children it is called just that, taking care of her children, but when a father is doing the same thing he is babysitting? I don't babysit my children my children, I am not a babysitter, I am father. I take care of my children whenever need be. It is not something that I have to go out of my way to do. It is not something that is an extra task for me to do. I don't do it just because my wife may be gone. I do it because they are my children and they need to be cared for! The next thing that really gets under my skin is when it is implied that new mothers are more knowledgeable than new fathers. In my humble opinion if a father is a good father and cares, he can care just as well for his children as his wife. If they are both new parents they both learn on the go. If they both intend on being good parents, they both will learn together. The mother might know some things that the father does not know, but the same can be said of the inverse. The last thing that drives me nuts is that you always here about dead beat dads and single mothers. While I can not deny that there may more dead beat dads then dead beat mothers. There might also be more single mothers than singe fathers. But that does not mean there are no single fathers and dead beat mothers. Instead of singling out a father or a mother while not use the term parent. No one can deny there are dead beat and single parents. To me parents are parents and they share the responsibilities of caring for their children. Neither parent owns any specific task, except breast feeding potentially, but even that has the potential to be shared if both parties want to and are willing, to a certain point. Beyond that both parents are equally capable of taking care of their children. I guess the point of all of this is fathers are just a much a parent to their children as their mothers. In my opinion unless one parent or the other has had previous childcare experience, than both of them start of at the same knowledge base. Neither parent babysits their children, they both care for them. Let's stop beating up fathers as a general rule and give them the same benefit of doubt we give the mothers. We all know there are bad mothers and bad fathers, so let's not single either parent out. There are simply bad parents! There is something to be said for a nice sunny day.
Today we celebrated mothers day at my brother in law's house. Overall I think it was a pretty good day. We actually had three mothers at the celebration, my wife, my wife's mother, and my wife's fiance's mother. It was actually pretty cool to have all the families together. On top of all the people from the families we had lots of furry friends. We had 3 dogs and 4 cats. Mostly the cats stayed hidden but the dogs had fun. Two of them 7 months old and one is almost three. It was kind of coll seeing them all play together. After lunch, we had brats - yummy, then we went outside. As my foot is all jacked up I have been staying off my feet, but I said screw it and went outside to play. We started by playing volleyball - all of us kind of in a circle and trying to keep it up. While I was not able to move as much as I normally do, I still had a good time. A couple times I even jumped off my left foot and landed my my left foot, (my right foot is my bad one). I am sure I only got about 2 inches off the ground and I probably looked a foot, but I gave it my all. After volleyball I played catch with a football for a bit. It did not last long because it was warm and everyone was starting to get tired, but I was one of the last ones playing. I might be gaining weight again and can't move so well, but I can still push through and keep playing with the best of them. I even managed to make it through the entire day without napping. There were multiple times where I was doing the head nod and fighting to keep my eyes open, but I did not surcome to sleep. I am pretty sure that I will pay for my fun tomorrow. My foot is probably going to be sore, you know, you really should not play volleyball, jump, or try to move fast while wearing a walking boot, but it was fun. I am sure my energy level is going to be -10 because I pushed through and did not nap, but I don't care. It was a good day! Sometimes you have to do what you have to do! Tomorrow will probably be a rough day and will probably include multiple naps, but I would do it all over again. I just hope that my foot is sore and I did not mess it up anymore :) Some people have negative opinions on support groups. They think that they area waste of time. They think that only weak people need to attend them.
Well, today I attended my monthly narcolepsy support group. I don't go to the meeting to fix myself. I don't go to the meeting to find all of the answer. Even though these meetings can not fix anything or necessarily give me answers, they are great. First I get the chance to be around others that are like me, other people with narcolepsy. These people don't Judge me because they understand many of things that I am going through. I almost feel like a normal person when I am at these meetings. The next positive things is that in some cases I can help others. While I can not give them the ultimate answers to their disease I can provide them with advise based upon my expierences. I am able to help others navigate the waters of their diagnosis a little better because I have already been done some of the same paths that they are now taking. Additionally while I do not stay awake for a long time, I get to spend some one on one time with my family. Usually it is my wife but once and a while it is also my oldest son. While I really wish that I could drive myself, sometimes it is nice to be chauffeured around. Finally I think that I getting the opportunity to forge new friendships. While I might not live next door to the people in my support group, nor have I known them for my entire life, I feel like that we are becoming friends. Honestly I have more things in common with some of the people in this support group than people that I have known for my entire life. So, for what is worth, if anyone try to tell you that going to a support group is a bad thing they are wrong. In my opinion support groups can be one of the most important tools in dealing with any major change, problem, disease, etc in our life. At the worst you will be able to meet other people that are dealing with the same things as you. I normally try not to rant to much in my blogs as ranting does not really help anyone, but today I feel the need to rant. So here it goes...
According to the state of Wisconsin I do not meet the criteria for being disabled. This is hard for me to believe because I can not drive, stand in place, just sit in a chair, watch television.... There are other things that I can do but I have to be very careful, like walking.... But hey, even though I have a doctor that has basically given me restrictions of standing no more than 5 minutes at a time, sitting for no more than 10 minutes at a time, and a 5 pound lifting weight restriction, there is some job out there that I can perform. Now the state has informed me that I do not meet their criteria for narcolepsy. Even though I have four sleep specialist, (three are also neurologists) that have diagnosed me with it. Additionally two of the neurologists have diagnosed me with cataplexy, you know that for the majority of the time only goes along with narcolepsy. But apparently the "experts" in the state review board have determined that I do not meet the criteria for narcolepsy. Because of this determination they will not approve my prescription for Xyrem or Modafinil. You know two medication that would give me a better chance at living a decent life. Honestly neither made my symptoms go away enough that I could work, but they at least provided me with moments of clarity where I did not have to fight the urge to sleep. So let's recap... According to the state I do not have Narcolepsy so I can not have the prescribed medication that I need. Now with out those prescribed medication I barely stay awake through out the day. But even though they will not give me the medication to help me out, they feel that I should be able to work. What kind of logic makes that work? I really wonder who in their review board is more qualified than the four specialists that I have already seen? I really want to know how they can review the same medical documents as my doctor's and determine that all four of them are wrong? I really wonder how they can determine that I have the ability to work when even one of their contracted doctors told me himself that I am a mess? What do I need to do to prove to these people that I need them to help me? I would never belittle anyone else's issues but sometimes I wonder if I did not have one of the more main stream or even deadlier diseases if their minds would not change? Is it possible that think my symptoms are simply a quality a life thing and don't really affect my capabilities? Rant ove..... I had the MRI on my foot today and it was an interesting experience.
It started with us having to check in at the ER. Never mind that they wanted me to arrive at 4:45 so I should have been able to check in Radiology. After checking in at the ER we went to Radiology. Once there, there was already another person waiting for someone at the desk. The bell had to have rung for a couple minutes before anyone showed up. The guy that was waiting before us was actually in the process of calling someone because he had waited so long. Once checked in the MRI technician came out to take me to the MRI room. On the way I told her that I would probably sleep because I have narcolepsy. Having me lay still, with a blanket on, is pretty much going to put me to sleep. Her response to that was, "You are lucky!". Not quite sure how lucky it is to have narcolepsy, but she thought I was lucky for it. Once in the MRI room I took my walking boot off and the tech asked me the standard questions. I climbed up on the table and she started to put my foot into a contraption to keep my foot still. I am not sure why but she had my foot slightly flexed in the contraption. Initially that was not a problem but as the MRI went my foot started to get tighter. Then as we progressed through the MRI the tech would tell me I was doing a good job and how long the next segment was going to be. That was a big bummer as I was sleeping each time. So I was woken up about 10 times for her to tell me that I was doing good. Because each time was not a natural wakeup, half way through I started crashing. My stomach started to turn and I started to get a headache. Needless to say that was not the best MRI experience ever. But on the bright side it is done. Hopefully by early next week I will know for certain what is exactly wrong with it and hopefully have a solid plan for recover. What is time? A very technical answer is seconds, minutes, hours, days, weeks, months, years etc... But what does that really mean? How do any of those terms affect our daily lives? They don't, so how does time affect us then?
To me what time means has changed over the years. As a kid I always wanted more time to play games, go outside, just to have fun. Time to me was about having as much fun as possible. To me wasting time was having to do any kind of work, going to school, clean, etc... It was not fun. As a teen my idea of time changed again. I wanted time to spend with my girlfriend and time to sleep. I did not care about much else. I felt it was a waste of time to work, even though I needed money. I felt it was a waste of time to go to school, because I was already working almost full time. I wanted down time, time to spend with my girlfriend, and time to sleep. Quite a change from when I was younger. My concept of time went from all about me and having fun to wanted to spend time with someone else and slowing down. As an adult my concept of changed again. I wanted more time to spend with my famiy. Most of my time was spent at work or being an adult. There was little time to spend with my family. Even when I was able to carve out time for my family I was tired and it always felt rushed. My concept of time changed in wanting down time to just wanting time with my family. Not a huge change but a change none the less. Now my concept of time has changed again. Narcolepsy has made me change my wants again. Now I feel like I am wasting time when I nap. Now I feel like I waste a lot of time almost all day because I don't have the energy to do anything. Now I want time when I feel awake. Now I want time when I am not fighting. I find it is kind of interesting how things change. As a teen I wanted time to sleep, now I feel like I waste to much time sleeping... But I am wrong in my thinking that I am wasting time sleeping. I am wrong in thinking that I am wasting time during the day because I am so tired. Time is simply a measurement, it honestly has no bearing on our lives, other than needing to be to places at a given time. I need to stop thinking about time as something that I can control. I need to stop thinking about time period. Instead I need to focus on what I am doing. I need to focus on what I can do. If I need a nap, so be it, I am not wasting anything because the nap is something that I need. When I think I am wasting time during the day I need to realize I am doing what I can do. I need to take care of myself and at this time that means not doing a bunch. When I can do things I should do them and when I can not, that is ok. Unless you need to be somewhere at a given time, time is simply a measurement. Live your life to the best of your abilities and you will not waste any time! I have blogged about being positive many times. Every time I wrote it I meant it, but actually following through with it is easier said than done. So I have decided to try something new.
I am going to borrow something that a friend has been doing for some time. Every now and then he will post something about the benefits of being his age. The posts are always positive and many times they they are very funny. With that said I will be posting little tidbits about the benefits of narcolepsy. I will put the posts on both my Facebook page and also my Facebook group that receives updates when I post a new blog. Each post will be start with, "Benefits Of Narcolepsy", followed up with a benefit of narcolepsy. Each post will probably be rather short but it will be real. It will be about something positive! To my friend that I borrowed the idea from, thank you! |