Have you ever made a decision that you knew was the right thing to do but eventually was going to come back to bite you?
For instance, you buy your first house because it was the next step in your plan. The house has everything that you wanted, it inspected well, and your gut said it was a good place. Initially after moving in everything is golden. The house is exactly what you wanted and there were no glaring issues with the house. Then life throws you an inevitable curveball and you lose your job. Unfortunately you lose your job and eventually the house. The decision to purchase your house was the right thing to do but now your credit is junk and you are starting from square one. I am now dealing with one of those decisions. I decided to not really have my father in my or my children’s lives. For me it was a pretty easy decision, my father had done many things to me in my life that made it hard for me to forgive. For instance when I was a teenager he got so mad at me that he threw me into a wall and broke my back. Another example would be when he literally skipped town in the middle of the night a couple days before I graduated high school. Then the next day his buddy showed up at my doorstep to sell things that he couldn’t take with him. You know the couch that was left in the house that I was now paying the rent on, the dining room table. etc. There were many other things but those are just a couple examples. Not having him in my children’s lives really hurt, but it was the best thing for them. He moved from Texas to Wisconsin because his health was not doing great and he wanted to be near his grandkids. You would think this is a good thing right…. Well in the end not so much. In the beginning it seemed like he had changed. He was going to my kids performances and he was showing up for their birthdays. I was happy because as much as angered me, he actually had a great mind and I thought he could share some good things with my kids. But then he quickly reverted to his true form. One birthday my youngest son really wanted him to attend his birthday party so he called him. My dad told him he wasn’t sure if he could make it but he would let him know. My dad never showed up to the party or called him back. Another time he showed up to my house where he was so hungover and high that he literally could not stay awake. He fell asleep on my couch countless times, basically he just slept. On another of my youngest son’s birthdays he sent him a card. You would think this would be a good thing right? Well not exactly. The card was meant for a adult woman, with a scantily clad male on the front of the card. He also scratched out one of the words and replaced them with others trying to hide the fact that is was an adult card. Eventually I decided that having my father in my children’s lives was doing more harm than good. Plus he stopped even trying to contact me to see what was going on in their lives. I had to make the tough, but in my mind the correct decision, to not contact him anymore. If he would contact me I would not ignore him but I would not be contacting them. I said many times that essentially cutting my father out of my family’s lives was the best thing but when he passed away it was going to hurt. With the health issues that my wife have, we did not need more trouble and heartache from my father. We had more than enough to deal with. Unfortunately I was correct, my father passed away in his sleep last night and I feel awful about it. I feel like I should have tried harder, sure my life is tough. Sure it is a constant fight for me to stay awake, but I fight and try to push through everyday. Why couldn’t I put some fight into some how keeping my father in my children’s lives? I also feel bad because I am mad at my father. He had terminal cancer. In the end he was a short timer here, but he had time. Unfortunately he gave up. He was given an option to allow him to live longer, but that option would have left him in a nursing home. He was so dead set about not living in a nursing home that he rejected that option. The last time I visited him in the hospital you could tell he was giving up. He cried almost as much as he talked. When ever he said the words that he wanted to live, he just cried. I tried to be encouraging to him. I told him about a one of my wifes friends that has lived 10 plus years with supposedly terminal breast cancer that has spread all over her body. I explained to him how I fight everyday from the moment I get up until the moment I go to sleep. I reminded him everyday was a new day. His response to me was that I just gave him a whole new perspective. Except he actions said differently. He would not look at me when he said I gave him a new perspective. He honestly would not look at me when I told him that I fought everyday. He did not want to hear my message. In the end his finally actions again showed that he gave up. He wore a c-pap because he had pretty bad sleep apnea. When he was in the hospital if he didn’t put on his c-pap his oxygen levels would drop so low that alarms would go off and the nurses would have to come in to put it on. The last night of his live he was in a nursing home because the hospital could not help anymore. That night while on some pretty heavy pain meds, (which can make your apnea much worse) he took off his c-pap…. He never woke up again. So here I sit, feeling like mud. Feeling like like scum of the earth because I no longer communicated with my father. Feeling even worse because I so angry at him for not even trying to stay alive. Feeling even angier at him because my life is nothing but a fight but I fight everyday because it is the right thing to do and he could not even fight ONE night in the nursing home. Somehow even in his death, my father continues to torment me and I feel bad about it…… How is it that decisions that feel like the best choices end up hurting you the most?
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Sometimes the best of news can be the worst of news. On one hand it cuts through what you want and on the other hand it cuts deep into you, a double edged sword. Today I finally had my disability hearing. It was almost three years after actually applying for disability. The hearing itself was about as laid back as you can get for being in front of a judge. It just kind of felt like I was in an a casual meeting at work. We had relatively comfortable chairs and every seemed to be very nice. The bad side of the hearing. I was a complete mess. I was literally struggling to say anything. I was either stuttering, simply couldn't talk or was falling asleep. The judged actually noted that I fell asleep 3 times in the first three minutes of the hearing. As the hearing went on my lawyer was given a chance to ask questions. As she asked her first question I promptly fell asleep. So much so that the judge had to wake me up and tell my lawyer that she needed to ask her questions quickly because I was really struggling. Personally as the hearing wen on I was getting more and more frustrated. Of course the more frustrated I got the worse I got. In terms of the hearing it was probably a good thing, but it was killing me inside. By the time the hearing was wrapping up my eyes were starting to well up tears because I was so frustrated with myself. I simply felt like a shell of myself. Before all of this was a pretty articulate person and now some days I struggle to get any words out. But as I stated above somethings are a two sided sword. While I personally felt the sword digging deep into myself it was also plunging itself deeply into my families troubles. At one point in the hearing the judge asked the vocational expert stated that he felt there was no job that I could perform in a local or national market. I had some concerns about the expert as so far the state had argued with all my doctor’s opinions that I was disabled. So to hear him say that I started to get hopeful. As my lawyer wrapped up her questions for me, which she paired down quite a bit from our prep yesterday, I was waiting for the judge to say that we will here back her opinion. To my great surprise she did not say that. She calmly stated that based upon my medical documentation and how I was in the hearing I was clearly disabled. So on the record the judge gave me the best and worst news I could have gotten. As it could have taken 6 months to get the judges judgment I got it today. While there is still some wait before things are finished up there is actually a light at the end of this almost three year tunnel. My heart raced with relief. At that same moment my heart sunk, while my doctor’s have said I was disabled and I knew I was the state had argued. Well at that moment I officially go the title of being disabled. While it might seem silly, that really hurt. Add on how I felt about my performance in the hearing and I was hurting more than I was happy. Eventually I will get over myself. Especially now that my family has a fighting chance to keep the things we had worked so hard to earn while I could work. It truly is crazy how something can make you feel so good and then so bad all at once. Those double edged swords are for the birds. LOL Have you ever seen the movie, “Groundhog's Day”? I feel like I am living the movie in a couple of different ways.
For those that have not seen the movie let me give a very short synopsis of it. In its purest form the movie is about a man that relives the same day over and over again. The man tries to make tweaks everyday to break the cycle, but alas when he wakes up in the morning he repeats the same day again. For me I feel like I face that same phenomenon but on two different levels. The first is the big picture level. It feels like I'm stuck in this nasty loop. Not to far in the past I was starting to get into decent physical shape. I was doing either abs or arms 6 days a week and I was doing cardio every night. I had not reached my weight goal but I was doing pretty darn good, in my opinion. Unfortunately then the hammer dropped. My insurance messed with my meds and I went far to long without one or both of my Narcolepsy meds. All of the hard work and gains I had made physically were gone. My symptoms had seemed to level off and that to was gone. I was back on the roller-coaster of not knowing how I was going to feel day to day. I am once again repeating that loop now. I was getting back into shape physically. I had even managed to run 4 miles at a time non stop. I still had a ways to go, but I was getting there. I was not happy with my symptoms but they were at least a known. My insurance has once again dropped the hammer on me. I am once again without my night time medication and I am paying the price. I was running almost everyday, now I am lucky if I can drag my butt out of bed and be more than a zombie. My symptoms are on overdrive and no matter how hard I fight I can't seem to overcome them. My life is in the Groundhog’s Days loop. The second level is the everyday level. I feel like every time I go to sleep I repeat the same thing over and over again. I struggle into my bedroom, usually needing the support of my wife. Once I finally get in bed then I struggle to get my CPAP and headphones in. Usually I fall asleep multiple times while attempting to do this. As in my arms literally fall down and I drop what I'm doing, kind of falling asleep. The repeated fun doesn't stop there. Eventually I wake up from either my nap or sleeping overnight and the struggle begins again. Once I get out of bed I literally have to fight with every part of my being to stay awake long enough to go to the bathroom. 9 times out of 10 I fail and I literally fall asleep standing up, leaning against the wall, you name it. Getting from the bathroom to my chair is the same fight. The same fight that I lose more than winning. I repeat this Groundhog’s Days loop at least twice most days, sometimes three. It is really heartbreaking to know that my insurance is able to literally turn my life upside down. It's heartbreaking for my family to have to deal with my crap at its worst because my insurance can hold up my meds. It's heartbreaking that no matter what my doctor has to say, my insurance decides if I really need my meds or not. Apparently in my life it's only my insurance that can break me out of this Groundhog’s Day loop. Being that my meds are really expensive, I guess I just have to resign myself to the fact that at least once a year I will get to live a nightmare inside of my nightmare because my insurance says so! Is the high road really the right road to take?
I have always taken pride in trying to take the high road when it came to things. While I have not been 100% successful I have definitely been more successful than not. To me it has always seemed the right thing to do. Especially in terms of trying to teach my children the right thing to do. I want my children to grow up and be upstanding men and to me taking the high road is a big part of that. Unfortunately as my health failed me, taking the high road seems more and more like a fool's errand. Countless times I have been outright insulted because of my health. Specifically my jogging in place. I don’t jog in place because I think it's fun. I don’t jog in place because I'm training for a marathon. I don’t jog in place for the sole purpose of getting more steps. I jog in place because that is what I need to do to stay awake. If I want to see my children perform or really be in public I have to jog in place. It's not a option, I either do it or I sleep. It is not like the jogging in place. It's not like it doesn't come without its own side effects. For instance take last night. My middle son was performing in the high school musical. We were at the school for close to 3 hours and for all but maybe 10 minutes of that time I was jogging in place. By the time we left the school I was paying the price for the jogging. Every step I took both of my feet screamed at me to the point that I had shooting pains starting to go up into my legs. My hips followed along with my feet. Thankfully each step just caused pain in my hips and it didn't shoot anywhere else. My lower back was sore and my shoulders were expressing their discomfort. Unfortunately that was not the end of the price I had to pay for my jogging in place. Today I'm even more tired than usual. When I got out of bed every part of my being simply wanted to crawl back into bed and go back to sleep. My legs feel like mud and simply don't want to do anything especially walk. In the end the price was worth it. I was able to actually watch my son perform in the musical. I watched the entire show. I was an active participant in my family. So, I'm sure the question your asking is how does this apply to taking the high road. Well I was not able to be near my family during the show. Why you ask? Well apparently the minor vibrations I was causing because of my jogging was to much for someone else. Apparently their comfort was more important than me being with my family. Approximately one minute into the show this couple complains to me that my jogging is bothering them. My wife tried to explain to them that I jog in place because of a health condition and they could care less. They could not handle me jogging in place. So I chose to take the high road and I moved away from my family as to ensure that my jogging did not bother this couple. Once again my wants and needs took a back seat to someone else, because they didn't care. Countless times people have said idiotic things and I have let them roll off my shoulders because stooping to their level is not what I want my kids to do. Taking the high road is what I want my kids to do. More and more I wonder how many times do I have to be the butt of someone's joke because of my health. How many times does my family have to take the back seat to everyone else because they can’t handle what I must do because of my health? Is taking the high road really worth it? I'm a strong person! I'm not a wallflower! I'm not one to left my family to be mistreated! Taking the high road is making me feel weak! Taking the high road is making me feel like I'm not protecting my family! When is enough, enough? I've had my fill of being a doormat because of my health! Is taking the high road really the right thing to do? When your best is not enough it is heartbreaking!
Those that know me or have followed my blogs know that I am as stubborn as a mule. When it comes to my friends and family I will push my limits and beyond. Shoot when my oldest son graduated I jogged in place on the metal bleachers for over 4 hours. If it's for those that are close to me, I'm going to push my limits every time. Well last night my best simply was not enough. My youngest two sons had a joint orchestra concert. After the first four songs I had no fight left. Both my feet felt like they were about to snap in two, my back was screaming at me, it felt like I had knives being jabbed on either side of my neck, and my stomach was doing flips. I simply could not fight anymore. My only option was to sit on the floor with my back to a wall and give into my bodies urge to sleep. I honestly thought that I was still semi conscious, but I was wrong. How do I know this? My youngest son came over to check on me and I wasn’t even aware that he did that. To make matters even worse, some ignoramus thought it was funny to drop their half drank water bottle on me. I barely even registered it, I was so out of it. It was already bad enough that slept through the majority of the concert that was not the end of my heartbreak for the night. My next trick was to throw on a little embarrassment for my family. As much as it pains me to admit it, I was not able to to walk back to our vehicle under my own power. So I had my wife on one side of me and my brother in law on the other side of me. Think a drunk getting helped to a cab, that was basically me. I can only imagine what my boys are going to have to endure after their friends got to watch me get “escorted” out to our vehicle. If I hadn’t done enough there was more. My wife got bad sleep at best last night because she was trying to help me. When I finally got in bed last night I was still in a rough place. I was starting to crash all over again. Well my female dog, who is basically a therapy dog without the training, hopped in bed with me. On my bad days she doesn't leave my side. Normally we don’t allow the animals to sleep in our bed but my wife knew I was in a bad place, so she left my dog in the bed with me and she slept on the couch. I am so grateful for her doing that but today she paying for her poor sleep. Now my bad day, is making her today hard! I don’t know how to put in words the heartbreak I'm feeling. My health is slowly overpowering my stubbornness and it's having more and more of an affect on my family. I feel powerless to do anything about it. I'm trying to get back into better shape, but the act of doing that drains me even more. On top of all that fun, my insurance is slowing down my refill on my night time meds and that's just going to make it even harder to push through. Today I'm just brokenhearted! To sleep or not to sleep, that is the question.
Corny I know but it is a real question. Obviously everything that read will tell you that you should sleep. Most of us have personal experiences that say that you need to sleep. Honestly I don’t think you will find anything anywhere that says you are better off not sleeping. But lately I ask myself do I really want to sleep before I lay down every time. Strange? Not really! To help you understand why I ask that, I will break down the question into two areas: naps and overnight. Most people would love to be able to take a nap. It makes sense how many adults can find time in their busy lives to fit in a good nap. Honestly I don’t know many people that can once a week none the less everyday. Well, for me, I have to nap, EVERY day. Why, you might ask. Well If I don’t get a nap in during the day, I'm pretty much a wreck as the day goes on. In most cases I can manage to push through and sort of stay awake but it comes at a price. Zombie is a loose term for what I am plus I get a multitude of additional issues. So it seems simple right, take the nap silly. Ahh, but it is not that simple. More times than not lately I wake up from my naps with a headache that does not go away until the next day, after sleeping for the night. Many times, probably close to half the time, I wake up from my nap feeling worse that I did before I laid down. At best I wake up feeling the same as I did before I laid down, I don’t know what it feels like to feel up refreshed. So I ask again why take the nap? I don’t wake up feeling refreshed. Napping is causing me to wake up with headaches. Close to half the time I feel worse after my nap. Doesn’t it just make sense to push through and deal with what I know what is coming? So how about going to bed for the night? Again this seems like a simple question. Duh, yes you have to go to bed for the night. Well not so fast. First off once I finally decide I going to bed, it's like my mind says OK and starts shutting my body down NOW! I can't tell you how many times I literally fall asleep on my feet getting ready for bed. As I'm getting my meds ready for the night, my eyes close, my head droops, my body shuts off. Consciously I'm aware that this is happening but I can’t do anything about it. My mind wins the fight and I simply have to wait to snap out of it. Sometimes my wife snaps me out of it, sometimes I manage to pull myself out of it, and other times my head droops fast enough when it suddenly stops it jolts me awake. The fun doesn't stop here. Multiple times once I finally get into bed. I say finally, because I can fall asleep while trying to climb into bed, wahoo! Anyways, now that I'm into bed I'm not ready to go to sleep. I need to put my headphones in, (my alarm rings to wake me up in the middle of the night for my meds and the headphones make it so that my wife does not hear it) and I need to put my CPAP on. This can be an adventure in itself. I can't tell you how many times I start to fall asleep while trying to put these things on. Sometimes I get my hands in position over head and out I go. Slowly my hands and arms drop to my body and there I sit, holding my head phones or CPAP but no ability to put them on. I can do this multiple times before finally being able to put them on. The fun doesn’t end here. Now that I have my stuff on and I can go to sleep, it's time for my eyes to kick in. What do I mean by that? Well it feels like someone lights a fire in my eyes and that fire is trying to burn them out of my skull. Countless times I've fallen asleep with tears streaming down my face because my eyes hurt so bad. Enough? Not quite? Occasionally I wake up in the middle of the night and use the bathroom. While I know this is normal for everyone, but when it happens for me it can be an adventure. Because of my medication I've fallen asleep on the toilet, fallen asleep on the bathroom floor, puked in the bathtube, gotten dry heaves, and felt like I was going to die…. Basically…. Finally it's morning…. It's morning and my meds have worn off. Sleeping in is not something I can really do anymore. Once my meds wear off my mind says it's time to wake up. It doesn’t matter that my body literally aches to sleep longer, that many days I'm almost in tears because I just want to sleep longer, my mind will not allow me to stay asleep any longer. I can sleep for like two to five minute stretches but I can't go back to sleep. I don’t know what it feels like to wake up refreshed. No matter if I'm napping or sleeping for the night, I wake up feeling like I never slept. I wake up craving to go back to sleep. So I ask again, to sleep or not to sleep? Is one really better than the other? Is another shoe about to drop?
A couple days ago I responded to a Facebook post. Someone was asking about potential help covering the cost of their medication. I suggested they look up the Care Voice Coalition, (CVC). I knew of CVC because in the past they helped me cover the costs of my medications and they are providing the lawyer that is assisting with my disability case. Today someone responded to my post saying that CVC might be closing their doors. Obviously that was a bit concerning to me, so I looked into what they were saying. Unfortunately they were right CVC is considering closing the doors. The reasoning is strange but none the less I was given good information. As of December 1st I have been trying to get disability for 25 months. Yes, you have read that right 25 months. It has been over two years since I have been able to work. My family has been extremely lucky the last two years and we have received help from countless people. Some family, some friends, some acquaintances, and in some cases complete strangers. Unfortunately our luck is running out. Our money has dried up. Now I'm concerned that I might be losing my lawyer. This late in the game, for my disability case, I can’t afford any hiccups. If for some reasons my hearing never gets scheduled or I am not approved at my hearing my family is in some serious trouble. I have already contacted my lawyer but even if they tell me not to worry, I am worried. CVC has posted a letter on their Facebook page from their CEO that they are considering their options. That is never a good thing! I truly don’t know how many more curve balls my family can deal with. I swear every time we look up we are looking another potentially big problem square in the eyes. We are a stubborn bunch but stubbornness can make everything right! There is a point where enough is enough.
In terms of the big picture today was a good day. We picked the house up, vacuumed, did the dishes, rearranged part of the living room, had lunch with my wife, did a little shopping with my wife, ate sores that were made in our fire pit, played football with my youngest, and played Magic my my youngest boys. You might even say I had a “normal” day. Of course I had to fit in a nap in there but you probably could not ask for a much better Sunday. I was productive, had fun with the boys, and had a good time with my wife. Unfortunately everything was not as good as it seemed. Somewhere around 12:30 pm my speech went heywire. Sure I had been up for about 4 hours and I had done quite a bit by that then, but does not explain what happened. Essentially from 12:30 on, other than a couple occasions, I was not able to say anything without a major stutter. Sure I have this stutter thing show up before but nothing like today. About the only thing I could get out consistently was ok. When I ordered my food at lunch, stutter. When asking where something was at in the store, stutter. Talking to my wife, stutter. Talking to my sons, stutter. Around 4 I took my nap, while it was later than normal I have taken naps. Shoot yesterday I did not nap at all, so the timing of the nap doesn't really matter. I really had high hopes that maybe after getting my nap my speech would return to normal. When I first got up from my nap, I was hopeful. My wife asked me something and I was able to respond to her without a stutter. Things were looking up, right? NOPE, that was pretty much the only sentence that I got out for the remainder of the day without a stutter. While I know having a stutter is not the end of the day, it is just another piece of “fun” that my health keeps throwing at me. My initial complaints were pretty normal, it sucked being so tired. But that was just the tip of the iceberg. No my list of complaints is pretty big and being tired is almost an afterthought. Now my biggest complaints are my memory is so bad, (me and Dori are long lost relatives), I can't stand in place without jogging because I sway so much, I can't sit in a regular chair without rocking and rolling all around, I can literally fall asleep while walking, I can sit and just watch TV because will fall asleep, I can't drive, I can't work, etc…. Now I get to add to that list my speech…. When is enough, enough? There are so many things that I have already lost because of my health, this speech thing just feels like getting kicked while you're already down. I have repeatedly said that, at least I have tomorrow. Tomorrow is another day. Tomorrow is another chance to have a good day. But what if that day bring another new bit of “fun” or if my speech gets worse. It is really hard to stay positive when things keep piling on. Some people think that because they can not see what is wrong with you, you must be fine.
Ohh how wrong they are. So far this weekend has been a pretty good weekend. My oldest son is down from college so that is always good. We celebrated my youngest son and sister-in-law’s birthday. I played outside with the family, had a water balloon fight with all three of my sons, played a board game, had a nice family dinner, etc. All and all a very good weekend, plus tomorrow is labor day so we will have a family picnic. Unfortunately I have paid a pretty nasty price for this good weekend. On my son's actual birthday, Thursday, we played Bocce ball. It was fun playing the game but in between events we had an hour break. When we got home I literally laid face first in our couch because my head hurt so bad from me starting to crash. At the end of the day we had dinner at Culver’s with my two younger boys, my wife, and my boys maternal grandparents. Dinner was good but I was crashing as we were eating our meal. My wife had to help me sit back up straight multiple times because I leaned to far and could not get back to center. Additionally multiple times my wife had to help move my head back to the normal position because I was either literally falling asleep while eating or because it was stuck and I could not move it. On the way back to our car to drive home, my wife literally walked next to me with her hand on me to help keep me awake while walking and to be there to brace me in case my knees buckled to much and I fell. Yesterday we had the actual birthday celebration. I helped pick up the house because I feel bad always having the boys and my wife do it as I tend to crash fast and hard when I help. I did not want them to have to do everything. In the end that was probably a bad choice. At supper I was rocking back and forth, side to side. Both of my hands were shaking, unfortunately I was not the one making them shake. My head was moving all over. My wife did not let me refill my drink because my legs were a joke. They were buckling a ton and they were extremely weak. Multiple times I pretty much fell asleep with food on my fork. I just slowly drifted off. In theory I was aware of what was happening but there was nothing I could do about it. Multiple times either my wife or my son had to help me snap out of it. Once again my wife had to escorted me to the car to make sure I got there safely. When we had cake and ice cream at home later I was still a mess. In the past I use to be the person that would help serve things. Well I can't do that now. I did not get my own cake or ice cream my family delivered it to me because they did not want me to get out of my chair. My stuttering started kicking in, you know the stutter that I never had until my health went to crap. Of course that irritated me and made me not want to talk. Today after waking up from sleeping all night my legs were still weak and my knees were buckling. My stuttering did not wait for the end of the day today, it started almost right away. Not all was bad. I did play a game with all three of my boys and I also had a balloon fight with them. But then I had to take a nap otherwise I was not going to make it through the rest of the day. After my nap my wife and three boys went to see a free water skiing show. I decided not to go because I was already not doing very good and I wanted to save as much energy as I could for our picnic tomorrow. Essentially I had to choose which event I would do with my family because there was no way that I could do either. Let me tell you that was a crappy position to be in because I want to do as much as I can with my family. Tomorrow we will have our annual labor day picnic and I will run around like a kid. I will have a blast doing it but I don't really have an option to not run around. If I stop I will start to crash. When I get home I will pretty much be worthless. My legs won't do anything that I want them to do, my speech will be a mess, and while I might technically be awake in all reality I will be sleeping. The rest of the day for me will essentially just be me being a zombie in my chair because that will basically be all that I can muster. So far this weekend has been great and tomorrow will be another day. But all the fun does not come without a price for me. At supper yesterday I actually made a comment to my son about how I felt like a person with special needs because I was such a mess. You might not be able to see that I have health issues, but my issues are real seen or not. Have you ever been frustrated because you can’t do hard work? Today I was!
It has been raining in my dining room and kitchen for way too long. Well today we started the process of fixing it. Unfortunately even before we started the process I was frustrated. My father in law is helping us repair the roof and he needed to run some errands before we started. He was running the errands on his own and asked if I wanted to go along. My gut wanted to go, my heart wanted to go, my head wanted to go, but I could not. The last two days I have literally struggled to keep my eyes open or walk to my chair. If I would have went along I would have simply slept the entire time. So I stayed home and played stupid video games. Not long after he left to run his errands I needed to nap. You know because if I did not nap I was going to be in trouble. So instead of going along, to if nothing else provide company, I had to sleep. The next step in the process was to rip off old flat roofing. Of course I could not help with that. I am iffy standing on the ground these days so going up on a roof is not even something I could think about doing. So instead of helping the family, (my wife and youngest two sons were helping) I was in the house playing video games in my chair. You know to stay awake as possible but being safe doing it by not walking around. As we are changing from old school flat roofing to a rubber roof we ended up needed to replace the plywood on the roof. They needed my help getting the new plywood up and the old plywood down. I put on my shoes, went out back, and I had to watch my family work. Every part of my being wanted to be on the roof helping my family get it done, but I could not. I had to wait until I could help for a minute getting wood up and then wait again while I watched them work. Next we needed to cut a sheet of plywood in half. Not a major undertaking. My wife and I marked off the sheet but that is where my help had to stop. As I was already swaying while standing and my head was starting to shake there was no way I could safely use a saw to cut the plywood. So that meant my father in law had to stop what he was doing, come off the roof, and cut the plywood. All the while I got to stand there and watch him do it. For the majority of my life I prided myself on doing things on my own. If I did not know how to do something I would look it up to figure out how to do it. I have never been afraid to “roll my sleeves up and get dirty” and now while I might be physically strong enough most things are no longer safe for me to do. I went from the guy that would figure it out and struggle through it, to that guy that just watches or worse is not involved at all. As I sat on the ground watching my family sweat away on the roof, I honestly longed to be up there. I wanted to be able complaining that my back hurt from bending over because that meant I was doing the work. Ever part of me wanted to fully involved and covered head to toe in old tar, because that is who I am. Unfortunately my health would not allow me to do that. Unfortunately my health basically turned me into a bystander. Today, I longed to be that dirty, sore, complaining person because I put in a hard day's work! Today I wished I could not worry about if I was safe to walk alone, be left alone, but to just do the work that needed to be done. Hopefully soon I actually get all of my meds and I at least return to the Narcolepsy me. At least that version of me could normally walk across the room. At least that version of me could move without the fear of getting a major headache from crashing. For my next couple blogs I thought I would write some “did you know” blogs. Basically blogs about how my health, mostly Narcolepsy, affects my life. Some of the information you could probably easily blog, other things you might have known about without doing some digging.
Before I begin the information it is probably important of me to share some basics of Narcolepsy. Narcolepsy is a REM, (rapid eye movement) sleep disorder. There are two primary characteristics to Narcolepsy. The first is that you must have interrupted sleep with no explanation. For instance you don't have restless leg syndrome, untreated sleep apnea, etc. You simply have multiple arousal at night with no known cause for those arousals. The second primary characteristic is that your sleep cycles are off. Normally a sleep cycle last about 90 minutes and at the end of that sleep cycle you go into REM. Narcoleptics tend to enter REM faster than the average person, in my case I can enter REM within minutes of going to sleep. They also tend to be in REM longer than the average person. Because of these two characteristics Narcoleptics don’t get the proper restorative sleep that everyone needs. Because of the going to into REM so fast and often and the multiple arousals at night a Narcoleptics brain does not get the proper rest it needs. In the end they build up a sleep deficit that is so large they live in a constant state of sleep deprivation. Now that the basics are done the real blog can start. Did know that people with Narcolepsy can also have bouts of insomnia? The common misconception of Narcoleptics are always asleep. It is true that sometimes a Narcoleptic might sleep a large amount of time. I have had days where I have been in bed overnight for 10 - 12 hours and then followed up with 2 - 3 hour nap. But that is only part of how Narcolepsy can affect your sleep. Because Narcoleptics are usually have a large sleep deficit maintaining an “awake” state can be very hard. For me this means I can't drive because if I sit stationary in a car for more than a minute or two I start to fall asleep. If I were to just sit and try to watch TV with no other stimuli I will start to fall asleep. Sometimes I literally fall asleep while standing up. Crazy right! On the flip side of things Narcolepsy does not just put you to sleep. Think about a long stressful day that you have had in the past. When you finally get home out sit down and try to unwind. Unfortunately even though you are exhausted you simply can no go to sleep. This can happen to a Narcoleptic person also. For me it is brutal when I have bouts of insomnia. I am beyond exhausted, my eyes burn because I need to sleep, my body is weak, but I can not stay asleep. When I try to go to sleep I fall asleep almost instantly but then I am back up within a couple minutes. I toss and turn as I cycle between being awake and asleep. Eventually I give up and get out of bed. Then when sitting in my chair my head will literally droop on its own as I fall asleep and then BAM, I am awake again. I can't really concentrate on anything but I can't manage to fall asleep. Sometimes my eyes burn so much tears stream down my face but when I close my eyes they burn even more. At its worst I have been up to 6am in the morning before I can finally go back to sleep. Did you know that people with Narcolepsy can have bouts of insomnia? Yes, Narcolepsy is so much more complicated than mainstream media makes it out to be. In many cases it can be life altering. My hope that in reading this blog you can see that Narcolepsy is much more than what others might tell you. On a personal note, I finally received the formal response on my appeal for my Xyrem denial, (my night time sleep medicine). The judge has ruled that Xyrem is a medical necessity for me. So after probably close to two months soon I will be able to get back on Xyrem and hopefully get enough energy to start moving again. It has taken a while but finally my insurance can no longer deny the two most important medications that I take for Narcolepsy. YAHOO! Why don’t you go get a job there is nothing wrong with you?
While no one has ever said these words to my face I know they have been said about me. So I thought I would share how my day went. Keep in mind that I am a week out from having my strongest sleep med so things are a bit rough. Today I rolled out of bed at around 8:15. Now let me tell you I did not want to get up, even before I got out of bed I felt like total crap. Unfortunately my lower back was screaming at me so I could not stay asleep. So despite me wanting to do nothing more than sleep I got up. After using the bathroom I literally stood in the hallway in front of my bedroom and just slept on my feet. I wanted to wake up. I wanted to move. I wanted to open my eyes. Unfortunately no matter how hard I tried I could not really do any of those things. I just kind of stood, or swayed is a better description, in the hallway trying to fight sleep but failing. After what felt like ages, in reality probably less than a minute, my wife noticed me just swaying there and she attempted to help me get going. Well that took some time. I still was not really able to shake out of my that sleeping state. Then even when she got me going, I would shuffle a couple steps and go right back to sleeping on my feet. Eventually she got me to the couch and helped me lay down. I wanted nothing more than go back to sleep but then my back started yelling at me again. So I layer there for a couple minutes with every part of my body trying to sleep but my back would not allow me. Grudgingly I drug myself off the couch and shuffled to my chair. I plopped down on my chair and quickly slipped back to that essential sleeping state. My head would bob enough to pull me out of it and then back to sleep I would go. During that time my wife got me my morning pills and a breakfast bar to eat. I took my pills and right back to that limbo state of basically asleep but not quite. My wife bothered me enough to wake me up again because I had to eat that breakfast bar or I was going to get sick from my morning meds. For the next couple hours I just kind of sat in a zombie state. I used my tablet and had the TV on but I honestly have no idea what was on the TV. I wasn’t really awake but I wasn't really asleep. I was simply here. Around 11 my wife, youngest son, and I had to go out. We went into one bank, we had to go into the lobby. During the time there I jogged in place but I was kind of in la la land. I was aware of what was going on around me and I was “awake” but I wasn't really there. Our next stop was the drive through at another bank and then to lunch. We were in the car maybe 15 minutes but I was losing what little bit of awareness that I had. Lunch went ok. The act of eating kind of kept my mind going, plus I ate spicy food so that was probably the most awake I was up to that point. Unfortunately the way back to the car did not go so well. As I first stepped outside I had some killer pain kind of in the top back of my eyes. The best I can describe it was that it felt like my eye muscles were cramping. It took me a couple minutes standing there, tightly closing my eyes to get the pain to subside. Once I got the pain to go away we started towards the car again. Then I was hit again with the pain in my eyes. I once again closed my eyes as tight as I could to try and get the pain to go away. Unfortunately it was not working. I took my glasses off and applied pressure to my eyes and that relieved the pressure a little. I finished the walk to the car and once again had to stop because the pain flared up again. When I finally got in the car I just kind of sat there covering my eyes hoping the pain would go away. As we drove home the pain started to subside but then the overwhelming urge to sleep kicked right back in. I went from one issue to the next. When we got home obviously I had to get out of the car. As I stood up that lovely pain in my eyes came back. My wife helped me into the house because not only were my eyes hurting but I was losing the battle with sleep. Which meant that my legs started turning into jello and my knees started buckling quite a bit. Once in the house I went directly to my room to take a nap because that was the only option that I had. My wife helped me get ready for bed because I was not really in the right shape or state of mind to do it myself and I laid down. Of course once I laid down I felt worse because that is pretty much how it goes everytime I lay down. It feels like a massive wave of sleep and tired just overwhelm my entire body. Hurt and I crave sleep so much it almost hurts. While I fall asleep very quickly, until I do I am in complete misery. I slept for between 1.5 and 2 hours. Unfortunately when I woke up I felt like I had a residual headache from a migraine. It was not super painful, just painful enough that I was aware of it. My head felt heavy and my thoughts were kind of slow… I have pretty much been that way since getting up from my nap. Every time I get out of my chair I have pause upon standing up to collect myself. I’m not necessarily dizzy but something is off. It's almost like I have to get my body to respond to what I want it to do. My walking is extremely slow and more like a shuffle than a walk. My knees buckle quite a bit, I'm just kind of a mess. Even typing this blog has been difficult. My head is not really listening to me and it is kind of bobbing around. Some times to the back, front, or sides. Almost like I am falling asleep just long enough for me to lose control of it, (think a baby falling asleep in a car seat). My mind is not really all here. I have had to retype things and reword other things because I can not figure out what I was trying to do or say. So with all that in mind, please someone let me know what kind of work I can do. Obviously physical work is out because you don't want someone with jello for legs and buckling knees to do anything physical. Sedentary work is not going to cut it because even with the TV on, me typing and talking to my wife I am falling asleep now. Plus for me to even entertain sitting for more than a couple minutes I need to be reclined or I start swaying all around almost like a top. My hips would be the base and more torso sways in circles around the base. While today is kind of a bad day, it is not that far off from my normal days lately. It sure would be nice if my insurance would get off of their butts and approve my night time medications. Anyways, on the bright side there is always tomorrow. A chance for a better day! I really appreciate the “spoons” theory as I think it is spot on. But I think it is missing one piece.
It does not really talk about recover much. You know if you stay up really late one night you know that you are going to have to catch up that sleep soon or later. Normally most people can do this by sleeping in a couple days or even going to bed early a couple days. Either way it usually does not take much time and you are back to normal just like you never stayed up to late. Unfortunately in my case there does not seem to be any recovery. It seems like if I do something that adds to my sleep deficit, I can not make it go away. For instance I was off all of my Narcolepsy meds for two weeks to complete my most recent testing. As you can imagine I was not doing so swell for those two weeks. Up until yesterday I was back on all my meds for some where around two weeks. You would think that I would start to get back to my “normal” before stopping my meds, but I have come nowhere near that. I am wearing down faster than before. Anything I do just completely wipes me out. And my speech is becoming comical at best. I seem to alternate between having some sort of stutter and not being able to talk at all. Even movement is not nearly as effective. Prior to the break in meds, when I played volleyball on a volleyball league I was at least good while playing. Now in between plays I am starting to sway, my head is shaking like I some kind of madman, and I’m starting to feel myself go to sleep. Even though I have adrenaline going from the game it's not enough to overcome my mind trying to put me to sleep. Now I am out of my night time sleep med again while I wait on my insurance to decide it they think I really need it. Unfortunately that means I will be adding to my ever growing sleep deficit, that deficit that was already way too big. How in the world am I going to get back to my old “Narcolepsy normal”? Yes I was tired, yes I had issues, but at least movement could keep me going. Right now, I dread movement because of the guaranteed crash after is just awful. I don't like not being able to talk, or walk right, or feeling like I'm going to get sick. I don't want to have to have my family help me back to the car or in the house because my walking is so poor. I don't like that my only option is to sit in my chair and become a zombie for hours just to get my wits enough to be able to kind of walk and talk. I'm not sure how much further things can deteriorate while I once again wait on my meds. I am afraid of how far things will slip because I don’t seem to have the ability to catch up at all. Where ever I slip to is more than likely going to be my new normal. With all that said, I think someone should add on a little blurb about the difference in recovery. I you were to say that I started off with 10 spoons a day, I am probably down to 8 spoons now and every day it will become a smaller and smaller number. Unfortunately, as of right now, I don’t foresee any chance of me recovering those lost spoons. I made the through another sleep study, both MSLT and PSG, and guess what?
I HAVE Narcolepsy! Imagine that, I was diagnosed a year ago. I have had 4 doctors diagnose me with Narcolepsy and 2 of them have diagnosed me with Cataplexy, but now the state will agree that I have Narcolepsy. My sleep latency was a tad over 3 minutes and I reached REM in 2 naps. As much as I’m being a snot, this is actually a good thing. Up until the sleep study I was not able to get my daytime stimulant for well over a month. The sleep lab literally had my sleep study results completed before 10am the day after the study, (I was amazed with that speed considering they always claim they need at least a week to get the results). My doctor resubmitted my prescription along with the new sleep study results and I was able to pick up my daytime stimulant that day. Now I just need to get the stimulant level back up in my system to get as much out of them as I can. Today I have a phone hearing to try and get my night time medication approved. I am hopeful that I win the appeal as my wife and I faxed over my new sleep study results and I now meet all of the requirements that the state has. Even if I don’t win the appeal I am pretty confident that if my doctor were to resend the prescription it will now be approved. I just really need it to happen this week as I only have enough of those meds for the rest of this week. It was a nasty two weeks and I'm still feeling the affects of not being on all my meds, but in the end it will be worth it. For once I am happy with my doctor because he got me into the sleep lab within two weeks of my appointment with him, (it could have been a week sooner but we wanted to ensure I was off all of my meds long enough). Then he obviously put a rush on getting my test results read and summarized. My doctor is hard to read but right now he is totally on my side. He actually called and gave my wife the results of my sleep study! I can not deny that it feels good to finally have something turn out right for once. Essentially this only puts me back to my status quo but that is much better than where I was without my meds. Now I just need to get something moving on my disability claim! I am having a weird side effect to not taking my meds for my sleep study.
My eyes are actually keeping me up. I have had multiple occasions where my eyes have actually managed to keep me from falling asleep. That felt weird to type since I struggle to stay awake and alert most days, but it's true. In the past it was not uncommon for my eyes to go crazy when I close them to go to sleep. I honestly think my mind is already trying to put me into REM sleep when I just shut my eyes. At least on a couple occasions I have been alert enough to tell my wife to look at me because my eyes were moving around so much. She was able to look at me and see that while my eyes were closed they were darting everywhere. Honestly I don’t think I can even move my eyes that fast purposely. On the positive side I have gotten use to this and it does not bother me much anymore. Unfortunately at least three times in the last couple days my mind has ratcheted up my annoying eyes when I close them. The first thing that is happening is that on top of the movement I am now having a “light show”. The best I can describe it is being outside when there is a lightening storm. The entire sky lights up in every direction. When it stops in one area it starts in another. Well I get the same thing basically. I shut my eyes and it's like there is flashes of light across my entire line of vision even though my eyes are closed. Ultimately I could probably live with this added to the movement but there is more. Another type of movement, aside from the darting around, is also affecting my eyes. It seems that my mind decides that darting around is not enough so it starts to roll my eyes back into my head, at least that's what it feels like. The problem is it feels like my mind forgot to tell my eyes to stop moving once they get so far back so all of my eye muscles are straining to move my eyes even farther back. It does not take much of this and now my eyes hurt. The only way I can stop this is to open my eyes. This is a strange experience to because my eyes don’t open up right away. First I can actually feel my eyes rolling back to the front, it is such a strange feeling because I am not doing it. Once my eyes actually get to where they are supposed to be then my eyelids will open. Upon successfully getting my eyes open I kind of shake my head, blink a couple times, and try to go to sleep. Unfortunately I repeat that same fun process. First my eyes dart, then the light show kicks in, darting changes to rolling in the back of my head, I have pain, attempt to open my eyes, they open, I attempt to clear my head, and repeat. After about 20 minutes of this I give up. My eyes are hurting and I frustrated. My hopes are that once I get back into being on my meds again things will straighten out and my eyes will stop being wonky. Sometimes it amazes me the strange things that your mind can do to you! On the bright side if this keeps up I'm going to have some strong eye muscles! :) I have blogged endlessly about how my health has affected me but I have not really spoken about how it affects my family.
This 4th of July holiday has really brought to mind how much my family is really affected. Every year we go to a 4th of July concert the day before the holiday. It is put on by the local professional orchestra, which being that my wife and two of my son's play orchestral instruments it is cool. Well this year I am not going. I can not attend the concert in good conscience while not on my meds. Currently I literally have moments where I simply start to fall asleep no matter what I am doing. For instance I was falling asleep playing volleyball with my family in the front yard. So far I can fall asleep while playing a sport there is no way that I can make it through a concert. For the first time in years I will not be able to attend this concert. While missing one concert does not seem like a big deal, in reality it is. This concert is family tradition now. Because of my health I will not be able to attend this tradition. My boys would never tell me, but I know that they will be upset that I will not be a the concert. The next issue is the holiday itself. Our family normally does a lunch picnic, (playing sports cooking on the grill, etc), then we go very early to the fireworks so that we get good parking. While we wait for the fireworks to start we continue to play sports of some sort. Finally after the fireworks we do some of our own fireworks for just our family. We'll this year my youngest son is worried that I won't be able to do all of these things. I know this because my wife told me. I know that life is not fair but there is no way that my 9 year old son should have any worries during this holiday. He should not have to worry that I might not be able to make it through the day. He should not have to worry that I might fall over because I am swaying to much. Unfortunately all these things are going to happen. Unfortunately what should simply be a fun filled day for him, he will have a nugget of worry in the back of his head about me. My wife has had to take on a huge new roll herself. While she has her own set of health issues she can not afford to worry about them. She worries daily if I will fall down. She worries daily if I will get the sleep that I need. She worries daily about how my health affects our children. Again I know life is not fair, but what did she do to deserve all of this? The last thing that really is bugging me…. It is summertime and my two youngest boys are off of school. This time of year is supposed to be one of the positives things about my health. I need to move so I am supposed to be able to play outside with my boys. Of course I am on no meds, so doing really anything seems almost impossible. So now my boys wonder aloud when we are going to go outside but I can not muster the energy to go outside with them. One of the few positives from my health issues has turned into another negative. Something somewhere needs to break for my family. I vowed as a kid that I would make sure that my family would have a better upbringing than I had. I vowed that they would not have to face the pain that I did. It seems that my health is putting them through a whole level of pain that I never knew as a kid. I feel as if I am breaking that vow. I was on my sleeping meds for right around a year straight. While I definitely would like for better results I was at least sort of sleeping at night.
I was not tossing and turning all night. I was not waking up and falling asleep countless times a night. I could go to sleep at night and not wake up until morning. My sleep was not great, it was not as restorative as my body needed but it was sleep. Well with my upcoming testing I am on no sleeping meds. I feel like I have to relearn how to sleep. While I can still fall asleep in literally seconds I can't stay asleep. For the past three or four days the most sleep that I have managed at a time at night is 4 hours. The norm is more like one or two hours. I fall asleep like normal, you know my head hits the pillow and I am out. But something wakes me up. I either wake up feeling like I am 1000 degrees or freezing. Or my back feels like it is going to break in two. Or my eyes are burning out of my head. No matter the reason once this happens no matter how hard I try I can not stay asleep for more than a couple minutes at a time. Can someone tell me how it is that I can literally fall asleep while standing on my feet, talking to someone, or really doing anything and I can't seem to sleep at night now? Narcolepsy is a strange beast! The worst part of all of this is that I better get my sleeping fixed. If I am not able to sleep during my upcoming testing it is going to throw a monkey wrench into everything. Sometimes it feels like no matter what I do, what path I take, things seem to be closing in around me. I knew that not using any meds for my up coming sleep study was going to be rough, but not this rough, this fast.
Yesterday day I managed a whopping 800 steps. You know the guy that gets 20k a day to keep going. I had no drive to do anything and when I did get up it felt like a semi was parked on me. On top of that my body temperature has been all jacked up, (this is a symptom of Narcolepsy) worse than normal. I can sit in my chair and go from comfortable to sweating on any part of me that touches the chair within in seconds. I do this back and forth all night. Being that I was so tired yesterday I took my normal nap. Except that normal nap went from being about an hour to well past 3 hours. Of course I woke up from that nap feeling like two semis were parked on me, but hey I guess I napped and of course covered in sweat. The remainder of the day was rough because my legs were more jello than not and well I simply was not all here. Unfortunately that was the best part of the day. My wife and I turned in for bed around midnight, (that is my fault as I dread going to sleep at any time because I wake up feeling so bad). After tossing and turning until after 1am I gave up and got out of bed. Ironic being that I am tired 24/7 but this has happened before. Once I got out of bed I was dead tired. Like I felt like I was going to die tired, but I could not sleep. Every time I attempt to go to sleep I would immediately fall asleep but be up within five or ten minutes. When I woke up I felt like I just got hit with a frying pan, but I could not stay asleep. Finally sometime after 6am I was able to kind of fall asleep on the couch. Of course I only managed to stay asleep until 9:45am. I woke up feeling worse than normal and completely out of it. After going to the bathroom I went into my bedroom and woke my wife up and simply felt like I was going to die. I just kept telling my wife I have to get some sleep as I kind of rolled around in bed. I know that I tossed and turned for a while but finally stayed asleep until about noon. Upon waking up I felt at least a little better than I did but I was not solid on my feet and staying awake was a challenge. Intermittently my eyes would close on my and I was pretty much out of it. By 1pm I was so ready to go back to bed, every part of me was begging for sleep but I forced myself to stay awake because I need to sleep tonight. I attempted to help make supper around six, but I was more wobbly than normal. I was literally starting to fall asleep into the sink as I washed my hands. Great fun. My wife helped escort me back to my chair to eat. While I waited for supper to cook I tried to not use my tablet. Funny joke! My youngest son actually told me that I should get my tablet out because I was falling asleep. Really! After supper my wife literally drug me outside to play volleyball with her and the boys. I was feeling like crap and did not want to do it, even though I felt guilty about not doing things with the family. I think we managed to play outside for about 10 minutes until I started falling asleep playing volleyball. Think about that, I was running around playing volleyball and I was falling asleep. My wife helped escort me back into the house. I washed my hands off, we played ball in the rain, and I started falling asleep while doing that. Once I was able to kind of get my wits about me I went as quickly as I could back to my chair. I am starting to hate this chair as much as my tablet. Seems to be my life, bathroom, my chair, and my bed. Not much else. This sucks! This is only day two with no meds and another two weeks to go. I honestly don't even know why I am doing the testing. It will not change my diagnosis. Really the only positive it can do for me is that I will have on record how poorly I am doing as the techs get to freak out as they will have to deal with me in between naps. Two more nightmare weeks coming up! I will try to keep you all updated on how it goes! At least when I blog I am suto awake. I have been waiting for the next shoe to drop and it finally has.
Have been without my daytime stimulant for over a month now. Keep in mind I have already been missing my other daytime medication for 18 months because of my insurance so losing the second one has been really rough. My speech continues to be awful, I don’t think I go a single day now without literally not being able to talk a time or two. My drive is essentially gone. I am putting weight back on. My Cataplexy is increasing. Things are rough. Well today I had my follow up appointment with my neurologist/sleep specialist. To begin with the appointment was rough. My doctor was behind almost an hour so I ended up sitting in the corner of the room and sleeping. You know so that I did not fall over while sleeping. When the doctor came in he actually was trying to be very helpful. He called my insurance to see if he could get a one month supply of my day time med. That did not work, they offered up starting the process to get it free through the manufacturer. Of course if approved that is at least a 3 - 4 week process. He completed the appeal paperwork to try and get my insurance to approve the meds. Then he followed up by calling the appeal department. They informed him that it would be at least 3 - 4 weeks until a hearing would be scheduled. Surprisingly he is signing up to attend my appeal hearing in person to try and get the denial overturned. Next we talked to the on staff pharmacist. He told us that the head of pharmaceuticals at UW has already talked to the head of department of health for the state about what they are doing with their medication denials. Essentially nothing has changed. The state is making their rules for prescription coverage purposefully extremely tight to cut costs. Furthermore the doctor informed us that the nurses told him that the state has been denying lots of people's request for prescriptions. Short version unless I happen to get lucky and the manufacturer approves me, I am not seeing any more daytime medication. Nevermind that I can go from appearing to be just fine to literally not being able to open my eyes in seconds. The next question is, what do we do now. In terms of medications…. Well in all reality unless my daytime medication manufacturer approves me to get their medication free, no more day time med. On top of that it is up in the air if I will continue to get my night time medication. The state has already denied that and I am trying to get the manufacturer to approve me to get it free for another year. But as of today I have no clue where that process is. My doctor asked where I sat in terms of my disability claim. Of course the answer is, still waiting on the state to schedule my hearing. Never mind that I am have already passed up the 18 month mark of trying to get approval. I understand that they have to be thorough in vetting people before giving them disability. But this long is ridiculous. I don’t know anyone that is doing well enough that they can go that long without income and come out OK. My doctor supports my my disability claim 100% but he can help me get a hearing. His advice is to keep plugging along. So to finish off my appointment my doctor thinks I should do another sleep study to solidify my disability claim. In the end I guess that makes sense but that means I have to go then next two weeks without any of my meds. No sleeping meds, no day time meds, nothing. I feel bad enough as it is with just my sleeping meds but two weeks with nothing, ohh boy. I have never been a person that felt that anyone owed me anything. I have always thought that you get what you earn. Well what did I do to earn all this crap? What did my family do to earn all of this crap? I'm already struggling to walk and talk some days with just my night time meds, what am I going to be like for two weeks with nothing? I will be lucky to even get to a zombie state none the less an awake state. In the end, the results of the sleep study doesn't change my diagnosis. My doctor went as far as to redocument that I have cataplexy. I will complete the sleep study because anything to strength my case I have to do. The next two weeks scare me a bit. How much of me will really be here? Will I remember any of it? My family’s future scares me even more. My health is not getting better, if anything it is getting worse. It is getting harder and harder to get my medications and I am seeing no movement on my disability claim. How long can my family continue to hold out as we wait for the state to give me a hearing? At this point the only shoe left floating is me getting approval for disability. If that shoe drops I have no idea what to do or where to go! Communication is one of the most important things that we do on a daily basis.
Think about it. If you were not able to communicate with someone, no matter how rich you might be, you are poor. Why? Well, you would not be able to tell anyone what you wanted. If you wanted that fancy car, to bad, you can't tell anyone. If you wanted that huge mansion on the corner, to bad, no one knows. Shoot if you wanted Taco Bell today, bummer for you, because no one knows. If your not rich communication is even more important because your most valuable resource is your love and others love of you. Well if you can’t communicate how would anyone know that you love them. If there is no way for you to pass on our love, how will others know. On top of that if you can't communicate others can not let you know that they love you. So what does this have to do with anything? Well lately my health is really starting to hamper my ability to communicate. My memory is even worse than before so remembering names is a joke. That is really making it hard to help coach my youngest sons team. Hey you does not work so well when there are 12 little yous, (players) and 3 big yous, (coaches). Even writing things is becoming challenging. Mid sentence I forget that I have already written something and I end up writing my entire or partial thought multiple times. Sometimes I catch it and go back and try to fix it. Sometimes I fix it, other times I do the same thing again. Other times I simply miss it. Then after I post what I have written I reread it and just shake my head at what I have posted. My English has never been top notch but I feel like it is falling to levels that it has never been at before which is hard to do because I had Dyslexia and my English skills started off pretty weak. As much as those things suck they are simply a nuisance compared to my speech. In just about every conversation that I have, big or small, I am losing words or complete thoughts. I can not tell you how many times in the last couple weeks where I simply quit talking because I am lost or frustrated because I can't talk. Many times I just want to scream and throw a fit. It is bad enough that my health is making it hard to walk, hard to to stand, etc. Now it is taking away my ability to communicate. My speech frustrates me so much. I feel so small when I am attempting to talk to my kids and I simply have to give up talking. I get angry at myself, which I know I should not, but I do. Then sometimes I get angry at my kids because they are trying to lighten the mood and they rib me about switching words. They are doing nothing wrong, I am just touchy about it. I know this which in turn makes me angry because I am angry over nothing. I am slowly losing my ability to stay positive. It seems that I keep having more and more back slides with my health and how it affects my life. I still have not heard anything about my disability. Each day with no word my family gets closer to losing everyday. I continue to have issues getting my meds. I still don’t have my day time meds and I have less than a month left of my night time meds. I am not sure if my next month of night time meds will be approved. My physical abilities seem to keep getting worse. My bad waking days are more common, my standing has not improved, and now there are times that my hands start shaking. Now my ability to communicate is starting to slip. I am not sure how I can keep a positive outlook as everything in front of me seems to be falling apart. It may sound cliche but I really need something positive to happen with my health. I would not complain if it started with my speech. It's almost three years since I received my initial diagnosis and it feels like it has been one continual back slide since that day. I really need to see a small speck of light at the end of the tunnel because that sucker is getting pretty long! My mind is winning the war.
I swear everyday it feels like everyday I lose another piece of myself. Today at supper I literally could not talk. Every time I tried to say something I would lose my words or I simply could not figure out what I was saying. I tried my best to hide my frustration but it was very obvious. All I wanted to do was scream and cry. What is happening to me? Not that long ago people saw me as an intelligent go getter and today I can barely talk. Yesterday I swear I momentarily lost the ability to count. For supper my wife and I had 8 cheese sticks. Of course while counting the 8 to split I got to 7. I stopped looked at them again and realized doh, no that is 8. No big deal right. Well when I went to split up those 8 I once again lost count. I remember putting the third one on my plate but the next thing I know my wife it giving me the look, you know that look. I was grabbing number 4, of course I had already gotten number four and that was number five. I either forgot how to count to 4, or I spaced out that quickly. It does not matter how long I sleep I wake up feeling simply awful. I have to fight my mind with every part of my being to get out of bed and then I pay for it. My mind is mud, my head hurts, my body hurts, I can barely walk, and keeping my eyes open is almost impossible. On top of that normally my stomach is a wreck to. This happens every time no matter if I have slept over night or taken a nap. Every time I lay down I question why I bother because I know when I wake up I am going to feel just as bad or worse. I swear it feels like the world is against me. I have not had my daytime stimulant for going on a month now. The funny thing is I was thinking about telling my doctor that I wanted to change meds. The side effects were getting to me. The tingling and pain in my feet was really getting to me. Well let me tell you, a month of not having it and I am OK with those side effects. While the stimulant did not give a huge boost or make me feel normal it did something. While on the stimulant I had some drive. I was able to push through. Do my exercising, stay in shape, being part of the world. I was almost able to be person. Now without it I feel like I am losing all of the hard work that I have done. I am losing the muscle I was building, my cardio is disappearing, and I no longer have the drive to do anything. The worst part is, when I finally push through, finally tell my mind to take a flying leap it still wins. I stand up and my mind head feels like it is going to explode or I sway around like a drunk person. That kills any chance of doing anything. Speaking of walking, that is a joke lately. I sway more than I walk. I don't want to bother trying because if I'm not swaying my knees are buckling. Lately I have been having the same knee buckle two times in a row. That is quite a rush when you think you are all good and then BAM, round two. With all that said it is summer. The kids are off school. I am supposed to be playing outside with them. I am supposed to be moving to stay awake which in turn gives me time with my kids. Unfortunately my mind taking that away from me. I am an assistant coach for my youngest sons baseball team and I am starting to dread the games and practices because when they are down I feel like I ran a marathon and then for kicks and giggles ran it backwards. Honestly everything destroys me. I put the air conditioners in and after the first one I was losing my hand dexterity. My dystonia started kicking in and my head started wobbling. My hands started shaking and my focus was gone. ONE air conditioner and my mind started shutting me down. Most days I just want to cry and say screw it. I am done fighting to stay awake and I will let me mind put me to sleep. But of course sleep makes me feel worse. I am at a loss for where to turn. My mind is winning the battles and is starting to take the lead in the war. Something needs to turn my way. SOMETHING! More and more I feel like a prisoner to my health.
My normal coping tools are not working near as well as they used to. While playing games on my tablet keeps me from feeling like a zombie and completely exhausted I now have to almost have laser focus on it. Essentially while I still can hear the outside world I don't really interact or do anything with it. If I pull my focus from the tablet I can immediately feel the exhaustion coming. If I keep the focus away for even a minute my head starts going crazy, my eyes start closing, and I start losing my grasp on being "awake". To make matters worse, I am starting to HATE playing video games. They are no longer fun, they are no longer a fun outlet but are now a necessary evil. I play them so much I have to continual cycle through games to keep them fresh enough to keep my interest. I don't want to play them, but simply reading sports or browsing FB does not work so well. I get maybe 5 or 10 minutes but then I start fading and off to lala land I go. Movement still kind of works to keep me awake, but it has to be good movement. My jogging in place rate is currently hovering in the 12 minute mile pace. While that is not break neck speed it is a bit much for hours at a time. Normally about 10 to 15 minutes into jogging in place I start sweating. While this is doable at home because I just take my shirt off, not so much in public. In public I just get hotter and hotter as I eventually start sweating through my shirt. The easy answer seems like, just slow down. Well I can't do that. If I do, my knees will start buckling, I will litterally start moving sideways uncontrollably and a crash is in my very near future. So my options these days are to work out like a fiend or tune everyone out and focus on a stupid video game. I am not a real fan of either option. But that is the prison my health has put me in. My coping techniques are not the only cell I have been put in. My medication is boxing me in also. I have to take a stimulant to maintain what level of alertness I now have. Unfortunately I know for a fact that I need it. Recently I took a three day break from the stimulant to try and hopefully keep its affectiveness, (a common step many narcoleptics take). Well those three days were a nightmare. When I was able to muster the will to try and fight my exhaustion and try to jog or exercise I failed. No matter how hard I pushed I could not move fast enough to overcome the exhaustion. I was litterally falling asleep while jogging at a 12 mile and hour pace. My eyes were closing and instead of staying in one place I started going all over the place. Using my table sort of worked, but I was more out of it than with it. On top of that because I simply could not overcome the exhaustion in three days I gained 9 pounds. So why is needed the stimulant an issue. Well it really messes with my circulation. My hands are now always cold, but I can live with that. But the circulation issues in my feet I am not good with. If I rest one leg on the other, to say cut my toe nails, my toes start turning blue. While not the worst thing in the world it is a bit unnerving. The worst part though is the pain and tingling in my feet when I have shoes on. You know the shoes that I have to wear to jog in place or go anywhere. If I try and tie my shoes really lose to mitigate any possible issues, move feet move around in them to much and they hurt more. If I get them to tight, look out because the pain is coming. Even getting them just right, eventually they will tingle here and there. All the movement along with the circulation issues pretty much means if I am on my feet they will hurt. Wake up in the morning pain, middle of the day - pain, going to bed - pain. My feet are a constant source of pain. My health has given me a sentence of pain if I want a shot of being alert of "awake". The last sentence my health has given me is to be center of attention and not in a good way. It never fails if I go out with my family somewhere, someone is going to say or do something stupid. Sometimes it is something small like asking a dumb question about my jogging. But I have also had people ask me to move to the back of a gym during a performance for my kids, (even though if you were watching the performance you would not be able to see me). Or the time when someone essentially had me removed from the seeing a hockey game, (I was able to resume seeing the game after complaining to staff). It appears that no matter what I am doing, if I am outside of my own home I am the negative center of attention. Heck even in my own home everyone is on high alert around me. They are always worried if I am I going to fall, (amazingly I have not), if I am doing ok, if they can help me with something, etc. Instead of being the person that took care of things and watched out for everyone, I am the one that is being watched out for. Even my 9 year old is always looking out for me. If I sway to far he litterally accompanies me to where ever I was going. He will not leave my side. It truly amazes me how much my health dictates my life. As over the top as it might sound, my health is the warden of the prison it has put me in. It has all the control, no matter how hard I push back and fight, in the end it has the final say. Tomorrow is another day. I will fight and push back like I do everyday, but I am afraid that the warden here simply has to much power for me to overcome. Well I had my follow up with the oncology doctor.
In the big scheme of things it could not have went any better. The doctor said he did not see anything that pointed towards cancer. He went a little further to say that aside from the initial blood work that started all of this testing, he did not really see any major concerns. While hearing that their are no major concerns is a great thing to hear, it kind of rubbed me wrong. It is starting to look like blood work that was taken when I had some sort of viral thing sparked some over reaction by my doctors. I know that I had a viral thing because my primary doctor told me so. But ok, he initially ordered some tests to be safe. The problem is one of those tests seemed to have went wrong. According to the ultrasound of my liver it was 20cm, you know 4cm over the allowed maximum size. Problem is the CT scan says it is 11cm. Now I know these are two completely different tests but how do they have a 9cm swing. You know a swing begin enough to take me from wow to you are all good. On top of that it appears that the doctor that ordered the CT scan mislead my wife and I. It appears that while he told us he was running a ton of blood work, he actually only ran one test. To make matters worse when I asked the nurse, the one that called to tell me I had to go to oncology, about the blood work she told me there was way to much info to go over on the phone. You know the results of one test was to much to go over. Come on folks..... Probably the most unnerving thing of all, I should not have been sent to oncology. The doctor there was kind of confused about why they sent me to him. My blood work showed no cancer signs and yes the CT showed my spleen to be slightly bigger than normal, the CT look pretty good to him. So my family got to live in fear for a week over something that appears to have been blown out of proportion. Don't get me wrong I am over the moon happy that I have no cancer. I am elated actually, I don't know how well I would have taken bad news there. On the other hand, in my opinion, flawed work on a my ultrasound and lazy work by a doctor caused my family a huge amount of stress. While I know people make mistakes and doctors are busy, when dealing with people's lives and health I expect a certain amount of accuracy and follow through by these people. In reality we trust our lives to them and when they make mistakes or take short cuts bad things can happen. Well I guess in the long run, what happened happend, I don't have cancer so I am happy. Tomorrow is another day and it will be a good day! I have been waiting for the perverbial other shoe to drop. That just seems to be how things have gone lately.
I always assumed that the next shoe was going to be financially related as I am still waiting on my final appeal for my disability application. I was wrong on that assumption, (even though that shoe might come crashing down yet). The next shoe is centered on my health. As if I didn't already have enough health issues I received even more potentially bad news. Today I was called by a nurse from my GI doctor. She first told me that I have a nodule on my lung. For that I need to have a repeat CT scan in a year. If that scan shows the nodule to be the same size then it is more than likely benign. So I have a year of uncertainty before I really know more on this front. The second thing she told me has shaken me to my core. Apparently there is something wrong with my spleen. But my GI doctor does not want to do more testing.... My GI doctor has referred me to Oncology. So I start out with a potential liver issue and now I am facing possibly cancer! I am not sure where I went wrong in my life. Sure I made mistakes and I will make more, after all I am a human being. I know life is not fair, but this is ridiculous. It is bad enough that my health has already take so much from me. It is bad enough that my health is putting my family through more crap than they should ever have to face. My health is already putting my home in jeopardy and now I am facing the possibility of even more nastier health issues. My strength and will has already been tested and pushed to limits that I never knew existed. My body is breaking down from all of the movement. My right knee is starting to stiffen and hurt by the end of the day. My hips are starting to feel like daggers are being jammed in them. On top of that some days I get shooting pains in my groin from each step I take. My only choice is to push through the pain. I don't know how I can fight through even more issues. While I know I don't know anything concrete yet, just the thought of more problems feels like a mob of angry people is kicking while I am down. All I want to do is throw my hands in the air and say screw it. I want to quit fighting, to quit putting myself through all the pain. I won't do that, I will continue to push myself, I will keep pushing through the pain. I just don't know how much longer my body and mind will hold out. I just don't know how much more I can take. I would be really nice to see the light at the end of the tunnel instead of the tunnel continually getting longer! I have previously posted a couple blogs about how my perspective on a movie has changed over the years.
Well it happened again. The other night my family and I watched Cast Away together. Now I vaguely remember watching it years ago and I liked the movie. But honestly I really only remember bits and pieces of he movie, the basic plot, and of course Wilson. This time, I took so much more from the movie! Multiple times during the movie someone made a comment that they could not do what Chuck, (the main character) was doing. Each time I told them that you never know what you might be able to do when your life is on the line. Your natural instincts to stay alive will allow you to do things that you never thought that our could do. Your natural drive to stay alive will allow you would push beyond barriers that you once thought to be insurmountable. To me, Chuck personifies what most people do when they hit a curveball in their life. The curveball can be anything; health, job issues, money issues, family issues, etc. No matter the issue we naturally do what we have to, to keep going, to survive. With that in mind, the next time someone asks you how you do what you do, remember Chuck. Maybe use him as an example of how you are doing what you are doing. Lastly, the movie, to me, really is a road map for life. The beginning of the movie is the good times. The times when everything seems to be going your way. His time on the island are the curveballs that you hit in life. You do what our must to get through them. Your choices might not be pretty and your execution might be lacking but in the end that does not matter because you made it through them. His rescue is when you overcome something big. When he finds out that is fiance moved on it is a reminder that even though you may have overcome something it still has an impact on your life. The final scene though is probably the most important one. After everything that he went through he still had his life to live. He simply had to choose what direction to go next. Everyday, everyone of us sit at those crossroads. Everyday no matter what is going on we still have to live our lifes. We simply have to decided which direction we are going. |