I am closing in on 200 blogs. Honestly this is a number that I never thought I would come any where near.
The positive things is I have been able to come up with quite a few ideas to keep my blogs real and unique each time, (at least I hope so). The other positive things is that I still have the drive to keep blogging. I am really enjoying doing it and from some of the comments I have gotten my readers are getting something out of them. The downside, I am running out of ideas. I have pulled ideas out of cartoons, movies, TV shows, real life, etc. But I am finding it harder and harder to keep my blogs new. I don't want to repeat the same things over and over again. To me that is a waste of my time and a waste of my readers time. They don't need to read something that they have already seen. And that is my dilema. I need to find another way to come up with new ideas. I need to find another inspiration moment that gives me more blog ideas. I need to find something to break through this writers block, I want to hit 300 or more blogs by the end of year. That is a lot of new ideas and this stupid block is getting in the way.
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Yesterday on a television show my wife and there was a very touching scene that made me think.
One of the main characters father's passed away and he did not really care. His father was very abuse and a horrible parent so his grandfather actually raised him. His father wrote his grandfather a letter and mentioned his son. He said that he knew he was a horrible parent and he was glad that the grandfather had raised him to be the man that he never could be. He also left his son a small box. Inside that small box there were trinkets from the main characters few good memories when he was with his father. No matter how bad the main character had it, there were still some good moments. That scene made me think. Does that apply to me also? At best I had a rough childhood and in my opinion both my parents were not only bad parents but bad people. Still today, my parents are making poor life choices. But are their good moments in the mostly bad? YEP! I remember funny stories sporadically through out my life. I remember the time that my father actually pooped his pants when he was pushing his fart out to hard. The problem was we were in the middle of a lake in his boat fishing. So what did he do? We made our way to the shore and he hopped out the boat. In no time he returned with a huge grin on his face. What did he do? He took off his poopy underwear, cleaned up with some leaves, and tossed the soiled underwear in the bushes. While that is kind of a nasty story it still makes me smile. For my mother I can remember her famous fried potatoes. Man those suckered were tasty. There were a couple keys to those potatoes. The first thing was that she made them in her old school cast iron frying pan. The second key was to have LOTS of butter. Man those suckers were good. Every bite dripped with lots and lots of butter. I simply can not explain how good those things tasted. Still to this day I make these same potatoes for my family. My mouth is watering just thinking about them. There is not a lot of good things that I can say about my mother. But she sure could cook some good food. Her homemade spaghetti sauce, she use to let that stuff simmer on the stove forever. The entire house smelled good all day long. Or her home made macaroni and cheese, there was so much cheesy goodness in that stuff. I would not wish my childhood on anyone. Heck, I have done everything in my power to ensure that my kids did not face the same things that I did. But with that said there are still some good moments. There are still some good things to look back at and smile. For instance I remember my step father being quite the alcoholic, but because of that there are some pretty funny stories. One day he woke up, walked outside buck naked and started sand basting the side of the house, using his man parts as his sand blaster. Or the time he woke up and needed to pee. He thought he had made it to the bathroom but really that was my mother's drawer. So he went to the bathroom in my mother's drawer and went back to sleep. Can you imagine her surprise when she went to grab her "clean" clothes???? So what is the message. Don't dwell on the negative parts of you life. Focus on the positive ones. No matter how bad things are, there are bound to be at least a couple positive notes. For instance just the other day my sister and I reminisced about gifts we gave each other for christmas. We did not have much so we gave away our favorite things. Sure we still got to play with them but we did our best to make each other happy. Find those favorite stories of your past and share them with someone. My guess is that they will bring a smile to your face. They will help you remember the good times. The moments can be as simple as a favorite hand shake that you had with a friend or as big as your favorite family vacation. It does not matter what the moments are, remember them and share them. They will brighten your day. I had my follow up on my ankle today. The doctor actually helped me understand how I broke my ankle a little better. Apparently the portion of my tibia that broke off is where the ligament attaches to it. Basically the ligament actually pulled it's attachment off of the bone. Oops, I guess I should not have done that.
On to the foot. Surprisingly the bone is actually healing. There is something to be said about being back on Xyrem again. I am not seeing much of an improvement anywhere else yet, but actually healing is a huge bonus. With out Xyrem a small cut takes forever to heal. In terms of the actually healing there is no two segments of bone that are healed, one on each side. The bone still needs to heal across the middle but this is a start. Unfortunately I still have to wear the boot for another three weeks. If I don't wear the boot I could step wrong and brake the ankle all over again. I guess I will have to live with another three weeks in the boot. But hey, good news is good news. I also got the doctor to fix up one of my ingrown toe nails. I have had bad toe nails for my entire life but I could not get this one out. I talked to the doctor about it and he hooked up by getting it out. Sure it hurt in the moment but I should at least get some relieve for a couple months. Yeah, for two pieces of good nnews I was bound for my luck to turn eventually! Maybe, just maybe, it finally is! It is heart breaking to see your child sit in front of you as they stare forward with that blank stair of despair in their eyes. To see their eyes well up just to the brink of crying and know that you can no do anything to help them....
Unfortunately in this case I made a decent wage last year before narcolepsy forced me out of the work place. It is unfortunate because even though I am not working now, when my oldest son completed his FAFSA for college he had to use my wages from last year. When we received his finial aid award letter it stated that we, (me and his mother) would have to come up with $12,000 a year for him to attend his college of choice, (University of Minnesota Twin Cities, school of Engineering). Being that I am no longer recieving any short term disability and I am still fighting for SSDI that obviously is not going to happen. But we were not completely distract because we knew there were other avenues to take on try and reduce that number. After we received the award letter we attended a school tour for those that had been accepted to attend the college of his choice. During the visit we stopped at the financial aid office and spoke with them about our plight. The lady was very nice and told us that this was not a huge problem we simply needed to complete a reconsideration packet and they would look at everything again. No problem, we completed the packet and sent it in. Well today the bomb dropped, my son got a call from the school and he was told that because he is an out of state student, (his school has reciprocity with WI) they could not ammend has aid at all. So here we stand with a requirement of coming up with $12,000 a year for him to go to college. Even when I was working that would have been a tough pill to swallow but with literally no income that is not possible. It is bad enough that this stinking disease not only affects my life but that of my family every day, now it is affecting my children's future. I am not able to work, but apparently I was to successful when I did work for my child to get the aid he needs now. Who cares that my family literally has no income, we either step up to the plate our he does not attend college their. Yes he can go to a local college or community college, but that is not what he wants. He pushed himself in school and accepted into a very good engineering school. But now because of my disease he can not go to the school that he worked hard to get to. Now because of my disease at a minimum he is going to have to settle for a much lesser school. I thought that my bad days were some of the worst things I can feel, but I was wrong. As a parent it is awful to see your child stair blankly forward as they feel their dreams are slipping away at the age of 18. All because I had some success in life before narcolepsy took so many things form me. Now it is taking things from my kids and things that should never be taken from anyone. No one should have their attainable dreams that are sitting at their fingertips, wrench away like a cruel joke. I usually try to be upbeat and positive about things. I have always been great at finding the silver lining in things or some positive spin. But in this case I can not. It hurts me to my child like this. It hurts me to the core. The worst part is the only thing that I can do is to try and support him with my love and caring, because there is nothing else that I can give him. I no longer have the means to support him any other way. Unfortunately love and caring won't get him to the college of his choosing. It won't get him any where other than sitting on the couch with that look of dispair. Today is a bad day at best! On Tuesday I will officially hit the three week mark of being on Xyrem. The last three days you could have fooled me that I was using it.
The last three days have been real rough in patches. Friday I had the first instance where my stomach just turned upside down. I have had this feeling before, it comes when I am crashing and crashing hard. On Friday I just kind of pushed through and made the best of it. I really hoped that I was just having a bad day. Yesterday my wife and I had plans to attend a 40th anniversary party. I was getting a headache earlier in the day and I knew the party was gong to be a bit rough so I ensured that I took a nap. Unfortunately when I woke up I still had the headache but what ever. No long after that my stomach started doing flops again. The only thing I could do was curl up into a ball and lay on my chair with my eyes closed hoping my stomach would turn around. Eventually it started to fell a bit better and I got ready to go. Overall the party went pretty good, (lots of tablet time) but as we started to leave I started to crash. My knees started buckling even while walking with my stupid walking boot, (it normally keeps the buckling at bay because I have to think about every step). Once I got in the car my crash hit full force. Stomach turned, my head started to hurt, I was in a rough place. When we got home I laid on the couch, curled up as much as I could, and went to sleep. My wife attempted to get up around 8pm and it probably took me a good 20 minutes to get off the couch. Today I was playing Skylander on our Wii. I need to stop playing so I turned it off and the moment I put everything away my stomach started turning again. It took about 10 seconds for me to start crashing. You got to be kidding me.... I don't know the cause of my major crashes the last three days, I just know if is happening. It could be the weather as it has been a little warmer. I can no longer handle any kind of heat. Which is just silly because I used to work in a foundry, plastic factories, etc, all very warm work places. Now if our house gets north of 75 I am in trouble. Even just sitting in my chair I start sweating across my entire body, even though I am not doing jack. Ugh..... I guess on the bright side I have actually been able to do some things with my boys other than play on my tablet. I have actually been able to play Magic with them, (it is a card game - Magic The Gathering). I have been able to play Skylanders on the Wii with them. Mind you pretty much the moment I stop doing these things I crash, but at least I can still do them. I truly hope that I am just have a rough couple days and things will start turning around. On the flip side, I know that I will wake up tomorrow. I know that I will have the chance to fight another day. Narcolepsy might have won the battle the last couple days but it will never win the war! Today I went to a 40th wedding anniversary celebration and it got me thinking. What is 40 years? And even more difficult what does 40 years of marriage mean?
Obviously everyone can count out 40 years, that is not a problem. But counting out the years does not define what 40 years really is. In reality I don't know what 40 years is as I am only 37 years old, so 40 years is beyond my knowldege, (even though I tell everyone that I am 27 :) ). Obviously I could do the comparison of what things cost 40 years ago or even a comparison of what things were used 40 years ago verses today, but to me that does not help answer the question. So how do you answer that question then? To me the answer is in the person. So let's review me as an example, even though I am a few years shy of 40. In my 37 years there has been lots of things all fitting on the good, bad, and ugly scale :). You have my education that spanned across countless grade schools, two middle schools, two high schools, and foue colleges. But in the end I received my bachelor's degree in business. In that time frame I lived in multiple states, starting in California and settling in Wisconsin. In between I made stops in Michigan, Arizona, and Tenessee. In each state I lived in multiple locations, some good and some bad. During my childhood I lived with my father, mother, and grandmother all for different reasons and different amounts of time. In my adulthood I have only lived with one person and only in two different places. I have lived with my wife within a month of graduation and within two years we bought the house we still live in. We decided that we were not going to move around like I did as a kid. Honestly those things are very minor in regards to the things that came next. My three boys were born and I married my wife, who was my girlfriend since the summer before our senior year in high school. We created a happy thriving family with more memorable moments than I probably deserved. I also started my working career making it all the way to the role of a manager before getting my degree. I worked in multiple industries ranging from making vehicle rims for the automotive industry to the agricultural industry. No matter the industry I always tried my hardest and was never afraid to get my hands dirty. The latest chapter in my life is dealing narcolepsy. Who knows where it will go from here? So as you can see 40 years or so, is really about the person. It encompasses so many things that it would probably take years to describe it all to someone. So what does 40 years of marriage mean? Well to me it represents one of the greatest accomplishments in today's society. It almost seems like marriage has lost the importance that it once held. I think that I know more people that have divorced than have stayed married to their first spouse. 40 years of marriage means lots of good days and some bad days. It means sharing every part of yourself with someone and them being able to live with you, warts and all. It means supporting your spouse as they cry themselves to sleep and being supported on your worst days. It means building your own family and watching it grow and flourish. To me 40 years of marriage is more of an accomplishment than owning a big house or a fast car, than having a extremely successful career, etc. 40 years of marriage is an accomplishment anyone should be proud of. I have been with my wife since she was 16 and I was 17. We got married at 20 and this year we will be married for 17 years. I say that's not too shabby, but we have a bit to go until we hit the 40 year mark. I am not worried though, we both love each other and we are both willing to put in the work to ensure that we not only hit that 40 year mark but also pass it. Congratulations to all of those couples that have been married for 40+ years, you are an inspiration to all of us married couples! Dear Society,
Recently in television and the media there has been some untruths put into main stream society about narcolepsy. There has been actors, cartoons, commercials, etc that have misrepresented what narcolepsy is and how it affects those that are afflicted with it. So I am going to help you understand what narcolepsy really is and how it not only affects those that have it, but also those around the afflicted. Probably the most important thing that our need to know is that narcolepsy is an invisible disease. No matter how insightful you might be or how intelligent you are, the chance are that you won't know if someone has narcolepsy or not. Part of this has to do with the fact that narcolepsy is an internal disease, there are no external queues, except for maybe bags understand someone eyes. But many people with out narcolepsy have bags. The other reason is that most people with narcolepsy do everything within their power to make sure that other people do not see their troubles. Really this is no different than anyone with an invisible disease. Those afflicted don't want to have to have to deal with those people who are completely unsensitive. They don't want to here other people say they are just being lazy because everyone is tired. They don't want to here people tell them that they wish that they could nap as much as they do. Because of this the put on a happy face and hide those things that are affecting them. The next thing that you should know is that the majority of people with narcolepsy act nothing like the movies or The Simpons. Just like everything else in life there is a bell curve to how narcolepsy affects people. There are some people that have very little symptoms and with treatment they can live their lives just like there is nothing wrong. On the over extreme end of the spectrum there are people that can fall asleep while talking to you and then wake up just like they never went to sleep. Blow taking into account that approximately 200,000 people in the United States have been diagnosed with narcolepsy, it would guess that at most 0.5% of those diagnosed are on that end of the spectrum, (1,000 people). Everyone else afflicted is somewhere inbetween those two extremes. Onto the next thing that you should know. Those afflicted with narcolepsy hate it. They wish hey did not have to nap as much as they do. They wish that they did not have to take all of the medications that they do. They wish that they could be normal. In many cases the biggest wish of those afflicted is that they could go back to their old normal. Go back to being that person that did not have to fight everyday to simply stay alert. They just want to be like everyone else. Finally you should understand how encompassing the affects of narcolepsy can be. What most people without narcolepsy might see is a person that appears sleepy and is struggling to stay on task. Occasionally you might see a person's knee buckle, they jaw go slack, maybe slur their words, and worst of all simply collapse to the ground. But the majority of the time these things are never seen. But those things are really just the tip of the iceberg. The "experts" say that for a "normal" person to understand what it is to be a narcoleptic they need to stay up three days straight. Then on the fourth day perform as if they had slept fine the previous three days. Now even for me, a person with narcolepsy, that description is hard to wrap my head around. So think about it this way. Remember when you were in high school or college and you pulled an all nighter. Maybe you did it because you were studying, gaming, partying, whatever. The key is that you pulled all nighter. Remember how you felt that next day. You were dragging bad. Your eyes were droopy. All you wanted to do was go to sleep, but alas you could not because you had to make it through the day. Now think about doing that every day. Every day you pull an all nighter, but you still have to function as if you had slept just fine. Does that sound like something you would like to do? There are countless other things that narcolepsy can do to a person. It can slow their healing down, cause them to lose weight because their metabolism drops, cause their body control to go out of whack, increase the chances of heart disease, reduce how well your memory works, cause you to lose your train of thought while talkng, take away your ability to drive, and this list goes on and on. Essentially what happens to a person with narcolepsy is that they do not get the proper restorative sleep. The sleep that you use to set your memories, heal your body, get you system back on track. Because of this a person with narcolepsy is essentially living their life in a constant state of sleep deprivation. Yes, the same thing that is used to torture people. It is not a stretch to say a person with narcolepsy is living under a constant state of torture, but they can not succumb to that torture. They have to do their best to act like nothing is wrong. So the next time you see someone that appears to be really tired or is sitting down while others are doing things for them don't assume they are being lazy. You never know what they might be dealing with. The next time you hear that a coworker is allowed to take a couple naps during the day that they are playing the system. Remember you don't know what is going on with them and they just might have narcolepsy. They just might be doing the best that they can. Even if you don't agree with what is going on, just keep your disagreement to yourself. You would expect the same thing for yourself if you had something going on in your life that is affecting you negatively. Maybe, just maybe, if you were to talk to the person and have a decent conversation. You might find that while they are tired, they still might have a lot that they can offer to you. If you just give them a chance they might surprise you. Sincerely, James Funk (a person with narcolepsy) When my ankle is not broken I use movement to stay awake. It is the most effective thing in keeping me awake and alert. My guess is that while I am moving I am creating adrenaline and it is effectively overriding my minds attempt to put me to sleep.
The worst part about the movement is not the movement itself but the responses that I get from doing the movement. Within the last year my family and I went to a retirement party. It was a pretty laid back party, pretty much people milling around talking to each other, some snacks, and drinks. Once my family got settled into to a table in the back of the room I started jogging in place. If I wanted to start upright and no sleeping jogging in place is the only thing that I could do. I had countless thoughtless comments as I minded my own business while jogging. The first person that walked up to me was an obviously tipsy lady. She kind of waddled over with a giant grin on her face. Once she gets close to me she says in a voice dripping with sarcasam, "what are you doing training for a marathon?". Now I try to have thick skin and not react negatively, so I simply tried to tell her that I have narcolepsy and I have to move to stay awake. Her response to that was, "I wish I could sleep more". After that she waddled away and I did not see her again. The next person that came up to me was when I was waiting outside the bathroom while my youngest son was using it. Of course I was jogging in place, it would not do me much good to make sure my kd was safe if I was sleeping while he was in the bathroom. An older man comes up to me, with that smile that says something ignorant was going to come out of his mouth. He proceeds to ask me, "why are you dancing by the toilet". I responded with my standard narcolepsy response followed up by my son was in the bathroom. Obviously a bit taken back he simple said, "good job keep it up". Another time one of my son's had a concert at his school. So there was lots of people jammed into an already warm gym in close quarters. As usual I was jogging in place, I wanted to see the performance, and not jogging would mean not seeing it. As the concert was winding down and people were starting to leave another child that my family knows comes running by me, stops, and starts jogging in place like a crazy person. You know because I wanted to jog in place for two hours in a hot gym. This child knew I had some health problems but she mocked me anyways. Until my cataplexy got to bad I use to walk with my wife to drop our two youngest boys off at school. Of course when we dropped them off, normally we would stay for a bit. My wife knew may of the parents and children there so she would talk with them for a bit. As we were standing outside sleeping is not really an option. So as my norm, I jogged in place while we were there. One parent walked by me and said, "if you keep that up you are going to have the best legs in town". Now that is not all that offensive, it still bugged me. I am not jogging in place to get my legs in shape I am doing it to stay awake. Probably the most annoying moment was at my oldest sons graduation. Obviously actually seeing my son graduate was very important to me. So I had to jog in place. As he had some where near 2,000 graduates in his class, the ceremony was held on the football field. That meant that we had to stand on the bleachers. My family managed to find a spot where there was a seat in front of some fencing. That way I would minimize the amount of disruption I would have on others. A couple people came over to sit near me and I gave them a warning that I would be standing up the entire time. Most of them accepted my warning and either found another seat or sat so they could see around me. One women did not take my waring so kindly. She glared at me, with a face that said who did I think I was standing the entire time. You know, because I wanted to stand on bleachers, jogging in place for almost four hours straight. NO, I did not want to do that, I just wanted to stay awake and alert and see my son walk across the stage. I honestly don't mind if someone wants to come up to me and ask why I am jogging. I am very open with them and I will tell them what is going on. If they have more questions I will answer them. I think it is good for me to share as much as I can about narcolepsy because most people know very little about it. What I don't like is when people come up to me and make stupid comments, make faces, etc. I am doing what ever is necessary to keep myself alert so that I can be part of my family. Plus all of my movement comes at a price. My feet, knees, and hips hurt almost everday. But for now I am OK with that, I will do what needs to be done, to stay an active member of my famiy. Aside from the ignorant comments the movement is a good thing in many ways. The first is fitness. When I am able to move I can stay pretty fit. Think about accumulating 20 - 25,000 steps a day. Your lower body is going to be in quite good shape. Also in many cases it allows me to educate people in what narcolepsy is and how it can affect people. If I just sat down and nodded off, they would probably just point and whisper, they definitely would not approach me. As I have said before while narcolepsy has closed many doors on me, it has also opened others. Obviously it makes attending concernts, performances, awards nights, etc pretty hard for me, but all is not lost. Because of what I do to overcome narcolepsy at those events I am given an opportunity to education people that have no clue what it is. Yes there are times that people get under my skin, but there are just as many that express a real interest in learning about my disease. All I have to do is just forget about the insensitive people and move on. Some times that is easier said than done, but in the long run they are just a blib on my radar, that will be gone before I know it. The key for me is to simply make the best out of my situation. There are bad days and good days, but I still get to try everyday. I definitely could have it worse. How do people overcome chronic illnesses or major negative life changes? Do they do it all on their own? Is there some trick that they use?
First of all you can not overcome these things on our own. It is simply impossible. Think about your worst day, that day that you just wanted to throw in the towel and give up. How did you overcome what ever ailed you that day? Where you simply able to will it away? My guess is probably not. My guess is that you thought of a loved one. Maybe your significant other, a family member, or maybe an animal. No matter who or what, there was something that convinced you that you could not give up. Maybe you thought of the pain your family members would be in if you gave up. Maybe it was the thought of your pet no longer having you to stand by that told you not to quit. Either way you used someone or something else to provide you with motivation. Heaven knows you did not want to keep putting yourself through agony. So maybe there is a trick then. Something you can do to make things all better. Maybe you just have to will away your problems. Let's be honest willing away your problems won't fix it. If you have pulmonary hypertension, no matter how strong willed you are, you can not it go away. There is no trick to fix your body on your own. There is no trick to make the pain go away. So what can you do then? In my opinion I think our need a team to help you cope with what ever is eating at you. Now this team may not be able to fix your problem but they certainly make it easier to bear what you are dealing with. I will use my situation with narcolepsy, cervical dystonia, and what ever is kicking my butt to help explain what I mean. My core team consists of four people and two animals. There are more people that help here and there, but the core team is four people and two animals. I know you are wondering how two animals can help, but it is simple. On my worst days the family dog and one of our cats will not leave me alone. The dog will follow me everywhere I go, including the bathroom. When I sit down in my recliner it is almost like the two of them mob me. If I let her, my dog will crawl right up on my lap and lick my face until I make her stop. Even when I don't let her climb up on me, she will lay underneath the leg rest on my recliner. The cat, well he does not follow me around, but once I sit down he is on me. He tries to nuzzle my face or simply lays in my lap purring away. While these two are not fixing anything it is hard to not perk up at least a little bit when they are showing you that much attention. But those two are probably team two of my core team. Team one would be my wife and three boys. Now just like the animals they can not fix everything and many cased they can not fix many things, but they can make it easier. They can pick up some of my slack, you know things that I am no longer able to do. But the key there is that they don't make me feel bad about it, they simply do what needs to be done. They try to make sure that I don't have to worry about those things that I can no longer do. But that is not the end of how they help me. There undenying love is a huge help. They don't love me any less because of my new limitations. They love me just as much as before my health took such a turn for the worse. In some cases they love me even more now. They love me more because the appreciate the fight that I put up to make sure I give them the as much of me as I can. They provide me with even more help than that. On my worst days they provide me with the drive to keep going. All I have to do is look at their faces and I am reminded why I fight every day. When I see my son's excitement about being able to do something for me it melts my heart. How could I ever think of not fighting everyday when he loves me so much? The same goes for my wife. I can see he pain in her eyes when she see me struggle. Her pain is because she loves me so much. How can I stop fighting when my wife puts herself through mental pain for me? Honestly that team is just the tip of an iceberg in terms of my support. I have other family members that I can talk with. Support groups that I can vent in. And I have my blogging. It helps me get out my feelings, something that I have never been good at through of my life. Plus it allows me to help others. So what is the short answer to how do you cope with chronic illnesses and negative life events. First and foremost you need to find your team. It can be as small as an animal and as large as your extended family. You just need to identify this team. The second thing you need to do is find an outlet. This can be anything, just something that you enjoy, something that you can lose yourself in. For me I have two primary outlets. The first is playing outside with my family, (when I can). The second is helping others. I can do this through my blogs and sometimes through talking with others. Just remember on your worst days that you have that team. Maybe instead of fighting so hard that day, lose yourself in your outlet. Do something to take your mind off of your problems. But always remember how much your team loves and cares about you. Remember that they need you just as much now as they did before things changed. If all else fails, remember that tomorrow you will wake up to try again. Remember that tomorrow will be a better day! Today I had my three month follow up with my new sleep neurologist. Ultimately the appointment went ok. He extended my Vyvanse prescription, continued my Xyrem prescription, started the process for me to get new supplies for my CPAP, and started the process to treat my Cervical Dystonia. All good things right....
But there were other parts of the appointment that are confusing me at best. One thing was the after visit summary. In the diagnosis section he documented narcolepsy with out cataplexy. Now this is odd because at my last appointment with him three months ago he documented narcolepsy with cataplexy. While I know the words really matter not, but it is frustrating that he keeps flipping. The sleep neurologist I seen before him diagnosed me with cataplexy, then he did, why would he all the sudden change his mind? Another thing that really frustrated me was I asked him about my wobbling when I stand. I tilt forward or backwards and there is nothing that I can do about it. Sometimes I am able to self correct soon enough and I simply tilt back the correct way. Other times I have to grab something or I will fall off and some times I have to have my wife or children push me back because I get "stuck" and can not self correct. Now this wobbling is intensified by my walking boot. The base of the boot is rounded so when I start to tip I can no do anything wth that foot to self correct. I mentioned all of this to him and he told me he did not think that was narcolepsy related and I should talk to the doctor that is treating me for my ankle. He said that maybe he can get me a walker. OK this is all and good for now, but I had this issue before my ankle problem. Getting a walker does not fix anything it bandaids the issue. I have yet to get any of my doctor's to address this problem and believe me it is a problem. Imagine not really being able to stand in place anywhere unless you can lean against something to keep yourself upright. That or jogging in place, which I can no do right now because of my ankle. I don't really care what is causing this wobbling I just want it fixed. Unfortunately not one of the doctors I have seen want to touch it with a ten foot poll. The other physical symptom I have from something is that I can not sit in a standard chair, (i.e. a non reclining chair). If I sit in one of these chairs I rock back and forth. Think how Rain Man would rock back and forth while frustrated in the movie Rain Man. Now I don't rock quite as bad as he does, but I have a good amount of movement. None of the doctors that I have seen are willing to touch this issue with a ten foot poll either. Finally he told my wife and I that my case of narcolepsy is very complicated. Clinically the diagnosis is very simple, but the other testing things are a little more fuzzy. I did the HLA blood testing and it came back negative. Now everything that I have read says that there are multiple people that don't have the HLA test, but because mine came back negative it is a negative hit against my narcolepsy diagnosis. Then he followed up with my sleep studies, while my sleep latency is 2 minutes or less in all of my MSLTs me hitting REM is spotting. I struggle with this as I am "dreaming" almost every time that I lay down to follow to sleep the moment I close my eyes. But then he followed up wiith, if a person has cataplexy the testing does not matter. Hello, just three months ago you diagnosed me with cataplexy. Three months prior to that a sleep neurologist diagnosed me with cataplexy. But now you don't feel that have it. I know his hang up, I don't have the emotional trigger. But the fact that my knees simply give out for no other reason seems to fit. Plus all four of the sleep neurologist have told me that I have no other neurological issues and they have no other possible cause for my knee buckling but cataplexy. But because there is no emotional trigger I can point to they are sketchy on giving me the cataplexy diagnosis, even though two of them have done it. I just don't get it.... Now not all is lost. I finally have Xyrem again and it is approved for the next year. So I don't have to worry about that headache for a while. Hopefully within in the next month I will begin treatment for Cervical Dystonia, while that won't fix everything but it will hopefully give me relieve from something. Honestly I don't care what I have, narcolepsy, hypersomnia, what ever... I just want to get answers and hopefully get some relief. No mater what I have, I will stil wake up tomorrow and I will be able to enjoy another day. Hopefully withing the next 4 weeks or so my ankle will be healed and I will be able to move again. Things are looking up, just because I don't have all of the answers that I want I seem to be at least making some progress. Better than nothing! Today's blog is something new. I am going to blog about myths and my opinions on them. Some of them I will agree with and some of them I don't agree with. Either way I will post why I either agree or disagree with them.
Myth #1: Time goes faster the older you get. At least for me my parents use to tell me this all the time. Fact - When I was a kid and my parents told me this I thought they were crazy. How can time go any faster when you get older. Come on, time is a constant and it does not change. Well as I have aged this statement has proven to be true. While on a daily basis time does not seem to go any faster, but when you look at the long haul things do go so much faster. As a parent it seems like yesterday that my children were born. All the first my kids have seem to go by so fast, so fast that some days I am afraid I have missed them. I hate to admit it, but my parents were correct when they said time goes by faster the older you get. Myth #2: People with narcolepsy will simply fall asleep at drop of a hat. On top of that it is a extremely funny. Half Truth: Very rarely narcoleptics can fall sleep in an instance, but that is not the norm, it is the exception. In reality narcolepsy can be a very debilitating disease that can affect every aspect of your life. It can affect narcoleptics sleep, healing, memory, muscle control, pain levels, etc. The medical experts say that to feel like a narcoleptic you need to go 72 hours without sleep and then perform as if you had slept properly for those three days. Myth: Marriage is easy! Fiction: In a long successful marriage there is always going to be issues. Think about this logically, you have two different people with different thoughts and opinions. Those two people are not always going to get along. Throw in there money and you are bound to have disagreements. The key though is to remember that any worth having is worth fighting for. If you truly value your marriage you will fight for it. If someone that is married tells you that they never fight, my opinion is that either they are not married for love or they simply married for convience. Myth: You should not have children until our are financially read for it. Fiction: What is financially ready? Does that mean that you have a job that pays you over 100k a year? Problem is if you are making 100k a year, you are probably spending money like you make 100k a year. You are still not going to be flush with cash. Or maybe fincially ready means that you have all of your school loans paid off in full. The problem there is, something always comes up. Maybe your car breaks or you need to pay for a major repair to your house. Then that money that was going towards those school loans is gone. Short answer is the chances are that you will never reach that "financially ready" point. Just make sure that you have enough money to pay your bills and put food on the table and then go for it. Kids are a blessing and well worth the inevitable tribulations. Don't wait to long because you might lose your opportunity. Myth: You are supposed to be your children's friends. Fiction: While it would be nice if you could be your children's friend it 's more important to be their parents. Your job is to make sure that they know right from wrong. Your job is to make sure that they do their best in school. Your job is to make sure that they don't get into trouble. You can not do those things if you are trying to be their friend. If you are your child's friend first, they are going to miss out on a lot of life lessons that are better learned at a young age instead of when they are grown. Myth: The school systems are responsible for your child's education and keeping them in line. Fiction: The schools are required to provide an education to your children, but it is your job to advocate for them and ensure they get the right education. If they are struggling because things are to hard, you have to step up and help them get extra help they need. If they are struggling because things are to easy and they are bored, it is your job to push to ensure that they are challanged. You have to put in the work to ensure that your children get a proper education. If they do not recieve that education it is not a failure of the school but your failure as a parent. Also you are to be the parent to your child. They are to reach school already knowing that they are to show respect to their teachers and classmates. You can not expect a teacher to parent your kids and teach them. There simply is not enough time for them to do that. Teach your children respect and manners and they will receive a more complete education. Maybe their teachers will have time expand your child's education if they are not worried about being a parent also. That is all for the night. Please remember these myths and subsequent explanations are all a matter of opinion. My opinion, but an opinion none the less. If any of them offend you, I am sorry, but I still believe what I have written. Remember that no matter how hard today might have been, you get to wake up tomorrow and try again. It could be so much worse. I learned that lesson all to well recently when a person that I knew died while waiting at a red light. They were doing nothing wrong just waiting their turn. Fight for what you care for and believe in! Don't dwell on the past and live life to its fullest! Today was a good day. My son's graduation party went as well as can be expected. Lots of family and friends showed up. All the kids big and small had fun playing multiple games. And while none of the food was fancy it all tasted extremely good.
But as good as the day was, I still was bumming. My right foot, (the one with the broken ankle) was really sore. It was mostly my fault as I was on my feet to much. First I did my best to help set-up because I wanted to make sure everything was ready to go. I know one way or another it would have gotten done, but I don't do well just sitting and watching people do things. It drives me nuts and I feel like a bum when I do it. I am aware it is all in my head and I need to sit when required, but it does not keep me from feeling bad about it. Second I did play some games. I played a couple games of latter golf and I played a game of horse with my middle son. While none of them required a huge amount of movement it was still being on my foot. Plus playing latter golf in the yard was a bit rough as the yard is not a smooth surface. Then for some reason my right shoulder has been killing me off and on. Sometimes it feels like someone is trying to ram a knife through it and other times it just aches. I have not done anything to make it hurt, but it still hurt. But the worst part was watching everyone having fun playing other games. A decent sized group of my son's friends came at one time and they were all playing games together. They started off by playing can jam, (a Frisbee game in which you get points for hittting a plastic "can", quite fun). Then they started paying spike ball, (think volleyball but by using a round net on the ground instead of a standard net). I love playing both of those games. I love the competition. I love the movement. I love playing with my boys. But I could not play those games. There is to much movement and there was no way that my foot could handle that. Plus even if I toughed it out, I would not be real affective because I am not so fast with a walking boot on. It just hurt to watch them all having fun doing things that I like because I could not participate. But then my perspective changed and changed a lot. As I caught up my Facebook feed I saw something very troubling. A happy go lucky, bubbly lady, that use to work for me at Alcoa passed away today in a car crash. What I know of the crash, the car she was sitting in was sitting at a stoplight and they were rearended. They were hit so hard that they got pushed into not one but three other cars. This women had a child, a grandchild, and a husband that will all be missing her. They all lost her in a blink of an eye and there was nothing she could do about it. She was on her way to go shopping and her life was ended in a split second. So while yes, it sucks that my foot hurts. It sucks that I can not do the things that I want to do. BUT, me and my family are still here. Tomorrow my foot will feel at least a little better and eventually it will heal. Eventually I will be able to play those games again that I want to play. My things still suck, but they pale in comparison to what this woman's family are now facing. Live your life to the fullest. Don't worry about what tomorrow brings, live in the moment and enjoy every moement. You never know when your moments might run out! It seems like just yesterday that my oldest son Anthony was born.
Soon our family saw lots of firsts. The first tooth, the first time he rolled over, his first steps, his first words, etc.. Anthony taught my wife and I so many things. We had never been parents before and just like all new parents we had to learn on the fly. We made are fair share of mistakes, but in the end everything that we did, we did it to make sure he had the best life possible. Soon Anthony made it to school and he did nothing but impress us. Even in elementary school he was a leader. He talked to everyone and if he could help someone he would without hesitation. On top of that he was always in the top of his class in terms of his grades. Many times we had to challenge his teachers to ensure that he received the education that he deserved. Sometimes we had to ruffle some feathers but he was worth it. Soon enough he reached middle school and he continued blazing his own path. He was never afraid to be himself and he put his all into everything he did. When he put his mind to something he was sure to succeed. This included soccer, playing the violin, math, what ever. On top of that he was a willing role model for his brothers. Not that long ago he entered the final stages of his youth, high school. There he continued to be a leader, he refused to let others lead him in the wrong direction. He also continued to accel at everything that he did. By the time he graduated he had already completed 4 high level college math courses. Some of those courses most graduating college seniors don't even take. He excelled in other things than just academics. He was able to travel to California to compete in a national level FBLA competion. He was the president of FBLA for two years, vice president of the National Honor Society, principal violinist in the orchestra, varsity tennis, etc. Needless to say if Anthony puts his mind to anything, he will not only accomplish his goal but he will excel at what he is doing. Outside of school he turned into a very caring citzen. One day on his way to school he help an elder gentleman that had fallen getting out of his car. While others simply drove by, he stop without hesitation. Anthony became an upstanding man. Probably the best thing he could have done. Tomorrow will official mark the end of his childhood. He has already turned 18 and graduated. Tomorrow will be the final celebration, his graduation party. After that he will fully enter the world of adulthood. Tomorrow marks the beginning of his next journey in life. As long as he keeps his eyes on his goal and tries his best, the sky is truly the limit for him. While I know that is a cliché but in his case I really believe it. I tip my hat to you Anthony, you have made me a very proud father and I am proud to call you my son. I can not ask anything more of you than you have already done. I would be honored if your two brothers followed in your footsteps! Never look back and keep your eye on the prize. If you do that nothing or no one can hold you back. I know I have blog about the little things once before but today a show my wife and I are watching made me think of it again but in a little different manner.
The show is called Bones and the two characters that spurred this thought were Bones and Booth. Bones is a world class anthropologist that works with Booth, and FBI agent, to solve the mysteries behind unexplained bones that are found. So far into the show, the audience knows that Bones and Booth really love each other but they have yet to express that to each other. Because of this Bones actually has a date wth Booths boss. During this date Bones shared a story about Booth, that he had told her when the two of them had a meal together previously. Booth found out that she disclosed this story and informed her that he had only shared that story with her. It was a little thing the two had shared together. This scene in the show kind of resonated with me. Most people equate special moments in their lives with big things. Think when you first met your significant other, when you first child was born, when you got married, etc. Obviously those are very important moments in your life, but they are not unique to you. Many others share similar moments with their loved ones. But everyone has extremely special moments that are a little more unique. Things that not every person can say that they have expierenced. These things, usually small compared to say your wedding, are probably even more important than those big things. I will give you a couple examples from my relationship with my wife to help clarify my point a little better. One of the first little moments in my relationship with my wife was when went to a local library,(before we got married). My best friend at the time accompanied us to the library. When the three of us walked through the library my best friend and I held hands the entire time, not my wife and I. She understandable embarrassed but still to this day we talk about it. To me this moment shows how strong our relationship already was and how comfortable I already was with my wife. I was not afraid to show her my true silly self, even though we were in the public. While this was a very small moment in our relationship it still a very important and memorable moment. Another small but important moment we had was when we celebrated our 10 year anniversery. We flew to California and stayed with one of her friends. While the trip itself is very memorable there is one moment that has even more meaning to me. One night we went to a secluded beach and watched the sunset. It was a chilly night so we sat close together to stay warm and we watched as the sun disappeared behind the ocean. It was a very cool moment but all in all was a very short amount of time. Even though it was a fleeting moment in our entire lives, it will probably be a moment that I will always remember. So remember while yes the big things are memorable and important but the little things can be even more important. You don't have to plan a huge tripe or spend lots of money to make great memories. Simply go for a walk in the morning, holding your significant other's hand, and watching the sun breach the horizon. Watching as the sky turns lots of colors and slowly brings the things around you to life.. It is moments like that, that will allow you to forget about all that ails you, at least for a moment. Cherish the small moments because you never know who important they will be to you later. For instance one of my favorite Christmas moments was when one of my children opened up a package of battiers. He had no clue what they were or what they were for, but he was beyond excited. I honestly think he showed more true excitement in that moment that he has ever shown since. The pure unbridled joy of a kid getting a present is something that everyone should be able to witness. The small things, make memories that you will never foget. The small things, can make all the bad disappear. Have you ever noticed when something goes very wrong in our lives we tend to focus on how it affects us? I for one have been guilty of this. The majority of my blogs about narcolepsy have been about how it has affected me negatively and in some ways positively. But what about our children, how do these negative experiences affect them?
I think the first thing we all should know is that our children put us on a pedestal. It does not matter if you are a stay at home or a working parent. It does not matter if you are a super athlete or super smart. Your children still put you on a pedestal. They want to be just like you when they grow up. With that in mind what do you think runs through their mind if something happens to you? Use me for example, how do you think my kids feel about all of my new limitations? Put yourself in their shoes, how would you feel if your parent is no longer able to work, drive, walk alone, etc.... I know had I been in that situation as a kid I would have been destroyed. First I would question how this person I looked up to, this strong person, seemingly could lose so much? If they are able to lose that much being such a strong person, what can happen to me? Then my next thought that would go through my mind would be how I could help my family make up for what my parent had lost. Do I need to find a job, do I have to buy my new clothes, do I have to buy food now... I would stop worrying about having fun and start thinking about being a grown up.... Aside from that do you think that your child would worry about you? I know I would worry about my parents if I was a child. I would be worried about what would happen to them. Are they still going to be around when I am an adult? Are they going to be able to do things with me anymore? It really does not matter what positives come out of the bad situation your children probably won't see it. They are going to focus on the negatives. So what can you do as a parent then? How can you help your child cope with the new realities of your life? First and foremost you need to be open and honest with them. Don't hide things from them. Don't sugar coat it. If you hide or sugar coat things your children will be so much more upset when they find out later. I can tell you from personal experience to find out that your family hid things from you is not a good feeling at all. The next thing you need to do is simply be supportive of them. Let them speak their mind, let them cry, just be there for them. Let them know things will be ok. Don't lie and say everything is going to be peaches and cream, but do let them know that in the long run, as a family, everything will be ok. The final key is to point out the positives of the situation. Even if the only positives you can think of are very small still point them out. Any positives will at least soften the blow. The key is to make sure you keep your children informed and remember that whatever is happening is affecting them as well. They need support probably even more than you do. I have not been able to drive since December of 2014, about 6 months after my diagnosis.
I stopped driving because I can not stay awake in a car for longer than a minute or two unless I am using my tablet. If I just sit there, I am out. If I were to try and drive, as it is not real stimulating mentally I start to drift off. Surprisingly enough none of the 4 neurologists that I have seen have taken my license yet... Anyways, initially not being able to drive was a pain in the butt but my family made it work. My son, wife, or brother in law would get me to work and back. If I needed to travel for work, my boss would get me a ride. So while it was a pain in the neck it was doable. But my symptoms have increased since when I stopped driving. This has made it more difficult for me to get around. Initially I could just walk where I wanted to go. Heck for lunches I was running up to 4 miles, it was keeping me fit and gave me a boost of energy. But as things have progressed walking anywhere is becoming an issues. First I had a couple instances were I slipped into automatic behaviors. The first time I was walking at lunch and I remember thinking I had to turn at the next corner. The next thing I knew I could not find the corner and I had no idea where I was. Eventually I found my way but it was a bit scary. The next time I slipped into automatic behaviors I was actually running with my oldest son. We went for a two mile run in the middle of winter. It happened to be a very unseasonably warm day so we were running in shorts and t-shirts. But it was still cold enough that there was some snow on the ground. On our way back, we ran one mile out, we came across a huge section of sidewalk with snow on it. I had no recollection of it at all. I was running while sleeping, how fun. Recently I have been able to walk a couple blocks one way ok, but the way back has been a different story. My knees start to buckle so I slow down. Then I get more tired and my knees buckle even more. By the time I get home I am shuffling my feet and I am walking like a 99 year old man. There have been multiple times were my knees buckled so much my chest has been basically touching my knees. Essentially the only thing that has kept me upright was the fact that I have strong legs. But, I no longer walk on my own for fear of getting lost or possibly falling. In most cases I don't walk very far even if I am with someone because my legs get so weak and my knees buckle so much. As movement and physical exertion normally keep me going I have thought about trying to ride my bicycle places. Honestly I love riding my bike. I use to ride 10+ miles a day. Unfortunately because I have ridden a bike so much in my life, unless I am riding all out there just is not enough physical exertion to keep me going. Plus on a bike I can get much farther and if I slip into automatic behaviors who knows where I might end up. So, within a couple years, narcolepsy has essentially taken away any form of self sufficient travel from me. But all is no lost, it just means I have to be a little closer with my family. If I want to walk some where, not too far, I just have to make sure that I am with my wife or oldest son. While they cannot keep my legs or knees from going crazy, they can at least stay with me. At least when they keep encouraging me it helps me keep my legs moving. While it might be a bit rough I can still do it. If I want to go anywhere farther than a walk, I just need to have someone give me a ride. If I want to stay awake, I have to use my tablet. While I really hate always using my tablet, it keeps me going. I might not be able to drive myself I can still get places. I just have to plan a little more than in the past. Narcolepsy might have taken away my ability to be a self sufficient traveler, I can still get where I need to go. All is not lost, just a little different. I don't understand why everytime something happens as a society we respond with hatred.
When a young man gets shot, the police are attacked. Instead of attacking why don't we instead focus on helping the community heal. Wouldn't we fix more things by focusing on healing the damage that was done to the community instead of attacking others. By attacking others we simply damage another community causing the need for even more healing. There is a terrible shooting at night club and once again society is attacking people that have guns. In all honesty it does not matter if you like guns or not, we should be focusing on helping those that are in need. One death is too many and there were many deaths. All of those families need help now. They all need help healing. Instead of focusing all of our energy on gun control let's focus on helping those in need. By rehashing the never ending debate on gun control nothing is fixed. Instead more hatred is brought up. Instead of helping others we create even more problems. Will the gun control debate help those families that died? No! Will the gun control debate help anything right NOW? No! Think about it this way, if you child gets hurt and needs to go to the emergency room what do you do? You get them to the emergency room and get them help. You don't stop and debate about how the injury could have been prevented. You don't stop and get mad at the wall that your child ran into and start beating it. You drop what you are doing and get your child the care it needs. To me that seems to be pretty obvious and cut and dry. Why is it so hard for us as a society to do the same thing when something large happens? Why can't we see that working on healing those in need is more important than attacking what we perceived to be the problem? Are we helping the victims of this night club shooting by attacking the gun industry? NOPE! Here is another way to look at this. I have narcolepsy and it has turned my life upside down. Now, if I went the route of society I need something to attack. Since in theory, my brain is causing my problems, I should attack it. I should yell at it, threaten to take it out of my head. Maybe even beat my head against the wall because that will hurt my brain. That will solve the problem right? No, it will actually cause more problems. Instead of attacking, I need to work on healing. Work on whatever I can do to improve my situation. But improving my situation has nothing to do with attacking things. It has everything to do with working on me, working with my family, my doctors.... Healing.... NOT attacking.... Maybe just maybe, if we as a society, were to focus more on healing than attacking we just might get something done. Maybe if we stopped attacking we could slow the spread of hatred. Apparently I am on a cartoon kick lately, but hey it brings back good memories just thinking about the old cartoons.
What can He-Man teach us? Well I think his cat Cringer can teach us a lot about fear. Before Cringer is turned into Battle Cat, he is scared of everything. He does not stand up to anything but instead he actually hides from everything. BUT, once he turns into Battle Cat he is a monster. He is afraid of nothing. He actually becomes He-Man's "right hand man". He-Man does not go anywhere without him. He-Man trusts him with his own life. So what does that mean to us? How can you apply any of that to your life? Well the first thing is that you never know what you are truly capable of until you actually try. Take Cringer, normally he is lazy and afraid of pretty much everything, but he is capable of so much more. Normally no one would count on Cringer to do anything because they don't think he is capable. But in reality his capabilities are endless. When ever you think that you have hit a wall and there is no way that you can get beyond it, try anyways. You will be amazed at what you truly capable of. 9 times out of 10 you will find a way around that wall and even if you don't you will feel pride in yourself because you tried. Don't give up because you can't initially see a solution, try something. It might not work but it might spur another idea. You are always more capable than you think you are. The second things is to never listen to others who say you can't. Other than He-Man, everyone else thinks Cringer is worthless. They don't think he is capable of anything, but we all know that is not true. We all know that he is capable of so many things. The same things applies to you. Who cares if someone says you are lazy, they don't know what you can do. Who cares if someone tells you that you can't do something, only you know what you can do. Never allow anyone to bring you down. They don't know you or what you can do. So what has He-Man an Cringer taught us? First, you are capable of more than you think you are. Your capabilities are endless! Second, don't let other's opinions of you bring you down. They have no clue what you can and cannot do. In all reality their opinion does not really matter. All that really matters is that you know of are doing the best that you can and that is ENOUGH! If you are ever feeling down just remember Cringer! What do short term memory and hallucinations have in common? Narcolepsy can cause short term memory issues and hallucinations.
It is very common for people with narcolepsy to have very poor short term memory. I have specifically been diagnosed with short term memory issues. The thing is short term memory issues can affect quite a few things. The most obvious issue is forgetting where you put things. Yes, everyone forgets where you put something once in a while, but it can be a common place thing for narcoleptics. I myself can forget where I put something, find it, and then minutes later lose the same thing again. But there are other issues. Some times you can forget about the details of a conversation that you just had. You will remember that you had the conversation but you simply can not remember any of the details. This can be a real problem when the person you were talking to thinks you are lying to them because there is simply no way that you can prove to them that you really don't remember. You can also forget what you were doing. For instance maybe you were washing the dishes and you get a phone call. Once you are done on the phone, you know you were doing something, but you simply can't remember what it was. You might even walk through your entire house multiple times to try and jog your memory and it just doesn't work. So how does your short term memory and hallucinations relate to each other than their tie to narcolepsy? Before explain their relationship, I first want to explain what narcoleptic hallucinations can be. I will note though, that many narcoleptics have very scary hallucinations and I do not have that kind. So on to hallucinations. First off the experts belive that narcoleptics have hallucinations because their mind thinks they are in REM (rapid eye movement) portion of sleep. When you enter the REM stage of sleep you dream. Short version, the person is fully awake, but their mind slips into a dream. The problem being the person is not aware they are dreaming.... Now I think it is probably easiest to classify the hallucinations into two groups. The first group are very scary and can really trip the person out. On the plus side of things, if there is a plus side to having scary hallucinations, is that once they snap out of it they realize it was all made up. The second group are hallucinations that could happen in every day life and there are no queues to point out that you are having an hallucination. This second type of hallucination is what I have experienced. The one I tell most people about is when I thought my son was disobeying me for a third time. I was extremely mad because he was continuously not listening so I really yelled at him. Seconds later him and my wife walk around the corner and tell me that he was listening. Still to this day, even though I know it did not happen, I have a very clear memory of my son not following directions. It is actually one of my most vivid memories.... Unfortunately I am having more and more episodes of hallucinating that things have happened when they have not. Some times it is like I can see the entire scene play out, just like I would had I it really happened. Other times I hear sounds that are not there, or scents that do not exist, or I feel something that is not there. Simply put there are many times that I think something has happened but in reality it did not happen. So back to the question, how does short term memory issues and hallucinations fit together. Well for me many times my hallucinations are some of my strongest memories. Being that my memory is so spotty I tend to believe the strong memories. This poses a problem though, if my hallucinations can be my strongest memories and I believe my strongest memories, is what I am remembering real or not? For me my short term memory issues actually make it harder for me to discern fiction from reality. I have actually started asking my wife questions about my memories to try and make sure what I remember is real. Obviously she is more than willing to help me out, but then my memory issues come back to bite me. Some times she can tell me that my memories are not real but then I forget the conversation. D'oh, double whammy! Well, that is a lot of doom and gloom. But all is not lost. Because I know that I have these issues if I ever have any question about a memory I ask right away. Many times I ask multiple times and eventually, reality sticks. Also instead of assuming things are real or make believe I ask right away. This helps me imprint reality into my mind before any false memories can be set. This is not always perfect but it is better than nothing. The biggest key is to use The Smurfs theory I blogged about yesterday. I use my family to keep me as honest as possible. As they all know why I am doing this they don't get upset, they just help. Sometimes once I get reality straightened out we can laugh about what I thought was real. I also try to make sure to not be too hard on myself. There is nothing that I can do about all of this great fun, so I have to make the best of it. In reality I would rather have these issues than to not be with my family. I would rather fight this stupid disease than to not have the chance to fight! If you were to have the Smurfs fight Wile E Coyote, the Smurfs would win every time. Have you ever wondered why?
At first blush it would seem like Wile should win. He is a genious. First of all he is able to come up with some of the most ingenious plans. Secondly he is able to create all of the necessary items to make those plans come true. He is essentially the "Einstein" in the room. No one can match wits with him. But he never wins. I wonder why? Now if you looked at the Smurfs you would find quite a motley crew. No one in the group is good at more than one thing. Shoot there are even people into the group that appear to be complete screw ups. On top of that they are pint sized little folks that are size disadvantage and in the cartoon they do not have the same magical power as their enemy. Yet they always seem to come out on top. I wonder why? Honeslty it is quite simple why the Smurfs always win and Wile always loses. While Wile is a certifiable genious he does everything on his own. While his plans are amazing they usually don't make much sense, but because he does everything on his own he never sees this. Wile is actually blinded by his own genious. If he were to have even one person help him, his chance of success would probably improve ten fold. Now the Smurfs. While every Smurf has their own faults, they well as a team. Even the perceived worst Smurf has positive points. Because of their team work they are able to overcome any weakness a single Smurf may have. On top of that because there are so many of them, they have countless ideas that can be bounced off of countless Smurfs. This allows them to find any weakness they might have in their plan and fix it before it hurts them. They are essentially the quintessential unbeatable team. So how does this apply to real life? Simple, when dealing with anything it is best to work as a team. If you try to solve/fix everything on your own you are bound to fail no matter how smart you might be. It does not matter how smart you are you will miss something. Take me for instance. If I were to try and battle narcolepsy alone I would not be successful. I would not be able to get around because I can not drive. I would have to greatly limit what I could eat because cooking on my own can be a risk. I would not be able to attend my doctor's appointments. On my bad days, I would have nothing to help pull me out of my funk. I would be just like Wile, I would be a prisoner to my own abilities. Now if I use the Smurf plan and I do, I have a much improved chance of succeeding. Because I have a team all of my limitations can be masked. My limitations are not gone but the members of my team can make up for them. As a team we might not be able to beat narcolepsy, it also will not beat us. My team is always there to help pick me up when I am down. I am never alone like Wile is. The moral of all this, never pass up help. No matter how prideful you might be, that help might be the difference between you having a good or bad day. Don't over think it when people offer help, take it. We all need help at one time or another and it does not make you any less of a person to accept it. Actually in my opinion, it makes you less of a person to turn down help when you need it. Remember Wile always loses and the Smurfs always win. The individual is almost always at a disadvantage to the team. Especially when you are dealing with invisible disease or major life problems. I am pretty sure I have said this before, but never take the little things for granted. But today I learned that lesson all over again.
As most of you know I broke my ankle a couple days ago. Well today I had to shower, I mean no one wanted to smell that right?! :) Well showers can already be a bit of a challenge for me. Standing in one place does not go so swell for me. I tend to rock back and forth, kind of like a rocking chair except it is me standing. Now this rocking has been going on for probably over a year now so I have adapted pretty well to the rocking. I simply always make sure I know my surroundings and take it easy. Not real hard to do in the shower as the walls are real close. But, today I added a new wrinkle to that rocking. As I am in a walking boot I cannot really wear that in the shower. Problem with that is I just broke my ankle so it is not such a good plan to put any weight on it. Plus how do I get in the shower without putting weight on my bad leg. Well, I figured out how to get in the shower ok. Just wear the boot in the shower then take it off, before starting the water, problem solved. But the next problem is how do I wash my good foot. I obviously can not stand on my bad leg and pick up my foot. My wife solved that problem, she would wash it for me. Whoot!, second problem solved. Now, how do I get out of the shower? Again problem solved, my wife would support me kind of like a cruch so that I can get out. Double whoot, solved another problem. Last problem, time to put my sock on that bad foot. D'oh, it is kind of swelled up like a balloon. There is not enough sock to cover the foot. Who would have thought my foot would swell up so much my sock would not fit. Well, my son stepped in and fixed that problem, he simply got me a bigger sock. As my wife likes to say, it is not a problem, but a new adventure. In this case I was able to navigate this adventure with the help of my family. With that said, while yes it is important to not take anything for granted, if you put a little thought into it you can overcome many of those little adventures that you encounter in life. The thing is you have to stop and think about it. While the answer might not come to you right away and maybe you might not even come up with the answer, but with help the chances are you can find some sort of solution. Never give up because while you might not be able to solve the underlying issue, the chances are there are ways to get around the difficulties that arise from that issue. Remember tomorrow will be a better day! As Number 5 would say, "No Dissasemble!"! Be happy that you are alive, things could always be worse. Today while catching up on Facebook I saw a meme that kind of resonated with me. It simply stated, "No dissasemble!". It is a line from one of my favorite movies from the 80s, "Short Circuit". Probably the most recognizable quotes from the movie is, "Number 5 is alive!".
When I saw the quote, "No dissasemble!", I knew I had to blog about it. For those of you that don't know the movie, Number 5 was a robot that became "alive" or self aware if you would. His singular goal was to ensure that he was killed or "dissembled". He did not worry about what was wrong with him just simply that he was alive. I think that this singular thought could help so many people. If, at least for a moment, we could stop worry about what ails us or what we percieve as our own weaknesses we would be some much happier. If we could stop worrying about the negatives and simply remember we are ALIVE, we would appreciate our lives so much more. Think about it this way, yesterday I broke my ankle. Now that really sucks for anyone, but it has additional negatives to me. I use movement to stay awake and with a broken ankle there is not going to be a lot of movment. I also love being outside with my family and well a broken ankle limits those options. But those are all negative thoughts. Yes it sucks, but I am ALIVE! Probably the singular most important thing to my family is that I am alive. No they don't like me to be in pain and hurting, but I am still here for them. They don't think any less of me because my ankle is broke. While they might give me a little grief or my ankle, in reality they don't care what limitations it puts on me. They simply care that I am alive. This also applies to my health problems. Yes they don't like the fact that I have narcolepsy, cataplexy, cervical dystonia, etc, but I am still here for them. I am still alive! They can see me every day. They can talk to me everyday. We are a family everyday. Yes I have limitations that I never had in the past but in the big scheme of things that does not matter. I am still me and I am still here with them. Honestly what else really matters! Isn't being with your family one of the most important things? We all could learn a lesson from a Hollywood robot, be excited that we are ALIVE! Stop focusing on our limitations, illnesses, bad days, and remember that we are ALIVE! None of the negatives in our lives define us, we define ourselves! I don't know about you but being alive sure seems pretty darn important to me. Maybe we need to have the same excitement as Number 5 does about being alive! It just might brighten our day, at least for a moment. And a moment is all you need to turn a bad day around! As I have written in the past narcolepsy has closed many doors on me but at the same time it has opened new doors also.
Today another new door was opened for me. Today marked the official day that all three of my sons are off of school for the summer. This will be the first summer that I will get to spend with my wife and three boys while not working. This will be the first summer that my work does not restrict the things that we can do together. This summer I will have limitless time to play outside with my boys and my wife. This will be the first summer that we can have a family fire and not worry about the time. This will be the first summer that we can just hang out during the day and do nothing, without worrying about wasting my precious free time. While I really wish I could work, I truly am looking forward to having this summer with my family. The best thing is that the timing could not be any better. After this summer my oldest son will be going off to college and starting his adult life. This is the last summer that all three of my boys are still my boys, come this fall my oldest will be a man! While I hate the fact that I have narcolepsy and how it affects me, I am greatful for this opportunity. How many families can say that they get to spend the summer together with no strings attached? My family can! I know there will be some tough times. I know there will be times when we all won't get along. But I am OK with that. I will treasure this summer, because it will be the last summer like this. I would gladly take a cure for narcolepsy right now, but I am greatful for this new opportunity. I am greatful that I will be able to enjoy all of this additional time with my entire family. Thank you narcolepsy! Who would have ever thought I would have written that? I have been told many times that I have more drive than the average bear. I have been told that most people would not do what I do, but I think they are wrong.
It is not the drive that a person has or how much of a fighter they are, it is about what motivates you. To me the key to being that driven person or that fighter is to ensure that you have the right motivation. Unfortunately in my experience that motivation can not be yourself, but it needs to be an outside motivator. I say this because if your motivator is yourself you can always convince yourself that you can fight tomorrow. You won't be upset because you are allowing yourself to do push off our fight for another day. Think about how often people try to get into exercising. They want to do it but they hold themselves accountable. So if they miss a workout it is ok, because there is always tomorrow. It many cases it is almost impossible to keep yourself on task on less you are naturally a very driven person. So if you are not a naturally driven person, how do you get that motivation. My answer is you need to find an outside source that keeps you track. The outside source does not need to know that they are your driving force, just you do. Me for example use my boys and my wife as my driving force. People ask me all the time how do I push so hard, how do I keep moving even though it hurts? The easier answer is I do it for them. I want to be an important part of their lives. I want to be a role model for them. I want to be their motivator. To do that, I can not quit, I can not give up, I have to fight. I can not push things off until tomorrow because that is not helping them. I can not decide to sleep all day today, because for the day I would not be part of their lives. No matter what all I have to do is look at them and I know that not fighting is not an answer. If I was my only motivator I would be in huge trouble. While I am naturally driven, it would extremely easy to give in to the urge to sleep. My mind and body scream at me to sleep, they are telling me I must sleep. It would be nothing to say I will fight tomorrow because obviously I must sleep today. If I was my sole motivator narcolepsy would be winning the war. My guess is that anyone that you belive is a fighter will echo the same thing. They fight for something, for someone, not just themselves. They found that singular motivator that they can not give up on. The next time you have a goal in mind don't just do it for you. Make sure that you have another driving force in mind. You don't have to tell anyone what the driving force is, just make sure to keep it in mind. That way when you are feeling down or weak you think of that driver. My guess is instead of giving in you will fight even harder because you don't want to let your driver down. Just remember that the driver can be anything or anyone. It could be a simple as you don't want to let your animal down. They would never give up on you and you don't want to give up on them. It could also be the school you graduated from. You don't want to let your schools good name be tarnished because you did not fight. It does not matter what your driver is, you just have to find it. Remember no matter what you think, there is a fighter in ALL of us! We all know someone that has done things that you thought were impossible. You are just as STRONG as they are, you just have to find the proper motivation, your driver! I identify myself as a big softy because I cry at sad movies. I cry when I am sad and when I am really happy. But I wonder why I need to identify myself that way.
When a women cries at a sad movie it is considered ok. Many people expect it because they feel that a women are supposed to be more emotional. Because they are more emotional it is expected that they will cry at something sad. But why is it that we identify women as more emotional. There are plenty of men that carry their hearts on their sleeves. When a women cries because they are happy it is no big deal. Society says that they are supposed to do that. When man cries because he is happy, people question his "manhood". People look at him and think that he is weak. Most boys are brought up being told that they need to not show their emotions. They are told they are to be the rock, they are to be a "man". They are told that showing emotions shows weakness. But I wonder why, what is wrong with a man showing emotion? But, isn't it common knowledge that if you hold everything in, eventually you are going to blow you top. If you hold things in you tend to mute your own emotions and you can miss out on many things. So if we know it is a bad thing to hold in your emotions, why does society tell men that they should hold in their emotions. Shouldn't we encourage people to express their emotions. Shouldn't we want people to be in touch with their emotions. Do we really want men to feel embarrassed because they expressed their motions? I for one am not embarrassed of my emotions. When my son graduated tears did run down my face and you know what, I am completely ok with that. I feel that I have earned the right to be happy that my son has achieved so much. I am not embarrassed when I cry about a sad movie. I think it is good to actually feel things and to express those feelings. Honestly in terms of watching a movie I think that you can get more out of it if you allow yourself to fully immerse in it and if that means you cry a little so be it. One finally thought is that it is better to be able to feel your emotions than not to. As my narcolepsy has progresses I seem to be losing touch with my emotions. There have been multiple times where I have had crocodile tears running down my face but yet I am feeling nothing. It is an awful feeling to be crying but have no idea why you are doing it. It is awful to not know what emotion your body is feeling... With that sad I don't try to hide my tears. I would rather wear my emotions on my sleeve and feel them than to bury them and lose a part of myself. Who cares what society thinks about you, own your emotions. In the long run it will make you and everyone around you better people. |