As adults we know that nothing in life is guaranteed.
One thing that many of us tend to take for granted is our health. Most of us think that our health will hold out for a long time as long as do the right thing. Unfortunately my family found out the hard way that our health is not guaranteed. It is not new news that I have narcolepsy and cervical dystonia. Nor is it new news that my wife has MS. Unfortunately there is now questions about the state of my liver. A little over a week ago I had blood work for hepatitis and an ultrasound of my liver done. My blood work came back clean, no hepatitis. My doctor does want me to get vaccinated against type A and B, but ultimately I can not complain about that. Unfortunately my ultrasound was not clean. Apparently I have an enlarged liver. Of course my doctor has not given me much information other than to go see a gastrointestinal doctor. I already have my appointment scheduled for early March, I sure wish it could be sooner but alas that is not in the cards. I am not a conscious worrier, I don't tend to over think things, I go with the flow. Unfortunately my subconscious mind does not agree with how my conscious mind deals with things. I know that until I have my appointment I will pay for this new bit of uncertainty in my life. I don't know how I will pay for it, but I know, without a doubt that I will. My family is already facing enough uncertainty in terms of if I will or will not get disability and if we will be able to hold out long enough to keep our home while my disability claim is being dealt with. Now there is more uncertainty with my health. At what point is enough, enough already? How much more does my family need to deal with? I for one definitely think we have reached or quota!
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Is the next shoe about to drop on my family?
Last week I had my yearly visit with my primary care physician. Normally my wife and I are pretty happy with this doctor. He seems to listen to us and even seems to try and help us out as much as possible. But this visit was different. Once he got settled in the room the first thing he had to say was that if I am going to continue to take my heartburn medication than I was doing it at my own risk. I said, "ok, but I have stopped drinking pop, I hardly ever drink juice, and I have cut out the majority of hot food that I eat. Unfortunately if miss my meds for one day I will get heart burn". So I asked him what else I can do. He said that I can take the meds at my own risk or go to a gastrointestinal doctor. I reminded him that I am taking the medication because the gastrointestinal doctor prescribed it after finding damage in my asophogas from having untreated heart burn and acid reflux. He went back on the computer, found the note from the gastrointestinal doctor and promptly reiterated that I can go back to see him again or take the meds at my own risk. Well OK then. So up to the exam table I go. He does all of the breathing checks and listens to my heart. Then he tells me to sit up and hold my arms out in front of me. Now he knows how this is going to go. I am going to start rocking and him and my wife are going to have to get ready to catch me. But, he told me to do it, so I put my arms out. Wahoo, roller-coaster ride here we come. I start moving all around both him and my wife get closer to keep me on the table, but he does not tell me to stop he starts tell me that he did not tell me to close my eyes. Sorry goober man, I am not closing them, they are doing it on there own - duh narcoleptic here and umm I am going to move anyways. Finally he has had enough fun with my roller-coaster ride and let's me put my arms down. He has me lay back so that he can examine my stomach. He is feeling around and says, you could do some ab work and tighten up some of the skin on my stomach. This kind of rubs me the wrong way as I HAVE been doing ab work. Lots of it. While I am sure I have long way to go I think my abs are pretty strong. For instance I hold an 8 pound medicine ball and do 3 sets of 40 situps, (15 full sit ups, 15 half situps - halfway up from the standard start position, 10 half situps - halfway down from the standard end position). I rotate so that all three types have a set of 10. I follow this up with two other sets of ab workouts. Whatever, I know I am doing the work. He ends the visit with letting me know I have to have blood work down and of course it is fasting blood work. The blood work does not bother me but the fasting does. Being that I am up around 5:30 and I need to eat right away or I get a sick to my stomach, I really am not a fan of fasting. But alas I needed the blood work so I did what needed to be done. Sunday my doctor calls to go over my blood work with my wife. My white blood cell count it up and he assume that is because I have some sort of viral infection. He feels that should clear up in 7 to 10 days. That would be great and maybe can explain why I have been feeling so bad the last week or so. He went on to explain that my triglycerides are up and my good cholesterol is low. He told my wife I need to up my fish oil and to exercise. The fish oil is easy but I already exercise at least 1.5 hours a day, I don't really think I am up for doing even more than that. But none of that is so bad, I guess. The next thing he said is that I need to have some testing done on my liver. Apparently one of my liver enzymes is over the limit. So next week I am having an ultrasound of my liver and blood work to test for hepatitis. My doctor thinks m enzymes are up because I have a fatty liver. He thinks this is the case because my weight is up 3 - 4 pounds from my last visit 14 months ago. If it is a fatty liver again his answer is to exercise. I truly hope that I don't have a liver issue. My family already has enough things to deal with, we really don't need anything else to deal with! I don't think that I can exercise any more than I already am. As it is I have to take a nap after pretty much everything that I do. If I am to exercise more that means more sleeping time. If it is something worse, who knows what comes with that. My family needs positive news, not more stuff to stress about! Countless times I have been asked how... The most common how is how do you move as much as you do, I can not even fathom moving that much.
My answer has always been simple and to the point. I do it because I have to. The movement is what keeps me as awake and alert as I can be. The movement is what allowed me to feel as normal as possible. I did not need to think twice about my answer because it was the simple truth. Unfortunately lately that question of how has been creeping into my mind. For the last week plus something has been kicking my butt. What ever it is, it is taking my existing symptoms and putting them on overdrive. I have had migraines before but not off and on for about a week, (luckily while the migraine has persisted on and off it is not as painful as it was earlier in the week). My cataplexy, (new buckling) is the norm rather than the exception. Multiple times a day I have been hit with sleep attacks where my only recourse is to go to sleep, where normally I am able to use movement to overcome my sleep attacks. For some strange reason my sleep attacks have been accompanied by weird breathing. Almost like I am having a panic attack. I can only take very short labored breathes. Probably worst of all, my two primary coping tools, (movement and using my tablet) are no longer working so well. My tablet has always been a poor coping tool, but when when paired with multiple other activities it has at least allowed me to stay slightly more alert than a zombie. Lately using my tablet seems to do nothing other than to bring on my sleep attacks even faster. But that is not the worst of it.... Movement has always been my trump card for all of this crap. Recently that trump card has been so effective. It has felt more like me reneging than playing a trump card. My middle son had an orchestra concert at school this week. I jogged off to the side as I normally do. Unfortunately I was literally falling asleep while jogging in place. My head was falling back as I was losing control of it. My eyes were closing uncontrollably. Short version, no matter how fast I tried to jog, I could not overcome my mind trying to force me asleep. Then getting to the car to go home was an adventure in itself. I could take approximately 3 steps before I had to stop and try to collect myself enough to walk another three steps. A couple days later I played a dice game with the family at home. To play the game I jogged in place, to keep myself awake. Well in the middle of the game I started jogging backwards. My wife asked me if I was ok, and I answered simply, "No". I was not moving backwards because I wanted to, apparently my mind decided that for me. The second issue facing me, I was not able to stop myself from moving backwards. I knew that I needed to stop, but alas I could not. Luckily I managed to grab my stationary bike and force myself to stop. It appears that once again my coping tool of movement failed me, my mind started taking over and I was powerless to stop it. The last couple days I thought that I was starting to feel at least a little better. Unfortunately every time I have attempted to push through and get moving I am shot back down. Take today for instance. It was a beautiful day outside and I know I needed to move. I went outside and played volleyball with my wife and boys for a little bit. Well, I had to stop playing because even though I was running around, I was falling asleep on m feet. Not only that by my breathing started going haywire on me also. So into the house I went and back to bed, because that was my only option. So as I once again lay in bed falling sleep with tears running down my face. How can I continue to fight my mind day in and day out when now my body has stopped listening to me? How can I continue to fight when my fight seems to knock me down even further? How do I fight, when my coping tools are no longer working? Honestly I do not know the answer to those questions! One thing that I do know, is that no matter how tough it gets I will fight. I don't know what tools I will use or how I plan on winning. But I do know that I will fight. I do truly hope that something improves soon though, I feel like I am losing a little bit of my fight everyday. I have said countless times in the past that no matter how bad today might be I have to remember that tomorrow is a NEW day.
I am really struggling lately trying to follow my own advice. For whatever reason my symptoms seem to be getting worse. My memory is getting worse, which believe me I really did not think could happen. It is getting bad enough that I am starting to see it more and more, which in the past I only noticed it sporadicaly. My coping techniques are becoming less effectve. I have literally started falling asleep while pedling my stationary bike at 18+ mph. Never mind that I am completely covered in sweat and breathing hard from exertion. Using my tablet does so much keep me going anymore but just keeps me on a fine line between a complete zombie and kind of being aware. My catalexy, knee bucklng, is become much more frequent again. My crashers are coming faster and hitting me harder. That last couple weeks have been even worse. I don't think I have made it through any day without napping once and in many cases I am napping multiple times. Unfortunately when I get up from my nap I feel almost as bad as I did when I went to sleep. I am pretty much guaranteed to crash after doing pretty much anything and the crashes are nasty. In the past my crashes would have one or two isses, extreme fatigue and burning eyes or possibly a migraine and random shooting pains through my body. Lately my crashes have included burning eyes, migraine, extreme knee buckling, extreme fatigue, breathing issues, shooting pains, etc. Essentially everything and the kitchen sink. Two of the last three nights I have wen to sleep crying. The first night I was simply overwhelmed with everything that was hitting me at once. Not only was my mind shutting down on me but so wasn't my body. I not only struggled walking but I also struggled to stand while supporting myself with something. My body temperature went heywire. I am normally an extremely warm person but I could not get warm being under a comforter and a heated banklet. On top of that I was struggling to breath. My wife had to help tuck me into my chair in the living room because I simply could not sleep in our room. The last thing that I remember that night was a tear running down my face because I felt defeated. Last night I got hit with one of the worst migraines that I can remember. For a little bit I held it off by jogging in place, (the migraine was a crash coming on). Unfortunately I lost my drive to keep pushing physically so I tried to use my tablet. Unfortunately the tablet did not keep the migraine at bay. I could feel it slowly building. I finally had to give in and quit tempting fate. I put the tablet away and rolled to my side in my chair and closed my eyes. Apparently that was a bad call. My wife and I decided it was time to go to bed. When I stood up I thought my left eyeball was going to blow out of my head. My only option was to close my eye as tight as possible. By the time I hit the bathroom I had to turn the lights off because even with my eye closed the light was killing me. Unfortunately the migraine grew and now my right eye was hurting as much as my left. Needless to say using the bathroom was interesting. Once I got into the bedroom I was pretty sure that my eyeballs were going to blast out of my school and shoot through the walls. When I laid down into bed I simply curled up into a ball as the pain intensified in my head. In between waves of pain I got myself situated in bed and my wife got me an ice pack for my head. Of course my fun did not end there. My body temperature decided to go crazy again. I started to become the wonderful shaking man as waves of cold ran through my body. Of course the shaking made my head hurt more. My wife was once again nice to me as she got another blanket it put it on top of me. Thankfully I am a narcoleptic, who would have thought I would be thankful for that, and it did not take long for me to fall asleep. Of course as I went to sleep I was again crying, this time from pain. Unfortunately that was not the end of my night. Around 2am I was up to take my second dose of medication and I had to use the bathroom. As I hit the bathroom I could feel my migraine coming back with a vengence. I was able to get back to bed and go to sleep before it got as bad as earlier. Yet this morning I am not out off the woods with this stupid migraine. I have kept all the lights off in the house, even though it is pretty dark around 5am because the bright lights hurt. On top of that I am still getting twinges of pain. I really hope this migraine does not come back with a vengence. Some thing really needs to let up. My health is really taking a toll on me. The daily mental beating I am taking is really starting to wear me down. The more wore down I am the harder it is for me to keep fighting back. There is still no quit in me, but it is pretty hard to fight when both your mind and your body are fighting you simultaneously. What does it mean to be generose?
My guess, is that if you were to ask most people what they thought generosity was, they would start referencing money. While you most certainly can be generous e with you money, that is simply the tip of the iceberg. In my opinion you can truly be generous with countless things. Honestly many times the most generous people are those that have the least tangible things to give. For a moment, I want you to think about the things that you cam give to others that do not require you to give away your own possessions. If you are stuck let me give you some examples. Can you be generous with your time? Why not, the old adage, time is money comes to mind. If you donate your time to help a cause, friend, family member, stranger, etc you could be considered generous. Can you be generous with your abilties? Absolutely! Possibly you are an extremely handy person and you help others fix issues around their house without being asked. In my opinion what you can be generous with is only limited by yourself. To me the key to being generous is doing something for someone in need and expecting nothing in return. No matter how small the gesture might seem, that fact that it was done is all that really matters. Think about this for a minute. What if a homeless person see a stranger walking by with no shirt. This stranger is obviously in need of a shirt but alas they do not have one. Knowing the stranger was in need the homeless person gives the stranger their "extra shirt". Now this shirt is in rough shape, not the cleanest in the world, essentially is worhless, but it will still provide the stranger with the protection from the elements that they need. To me that homeless person was being extremely generous. Again I want to pose the question, "what does it mean to be generous?" To me the answer is quite simple. To be generous you simply need to help someone else that is need while expecting nothing in return. You could be genrous with your time, knowledge, abilties, resourses, food, clothing........the list is limitless. I decided to write about generosity because I have personally been on the receiving end countless times. Without the generosity of countless others my childhood could have been much worst that it already was, but that is in my past. What really spurred me was the last 14 months. Since my health has taken from me the ability to work my family has been in need of so many things. Some things as small as a roll of toilet paper, some as large as a house payment, and countless things in between. The amazing thing is without fail, each and every time we have been in need, someone has stepped in and provided what we needed. In every case there has been no strings attached and in many cases when we did our best to express our gratitude we have been told that no thanks are required. Words cannot express how much my family appreciates everything that has been given to us. What I can say is that everyone's help has made an unbearable situation bearable. While everyone's help can not fix either my wife's or my health, it certainly reduces some of the stress. While I know that Christmas is not supposed to be all about gifts, I was extremely worried about Christmas this year for my children. While my children are always greatful for whatever they get and they don't really expect anything, I was worried that this Christmas they were in for a really rough year. Well, because of the generosity of countless people, my family had a great Christmas. While there might have been a couple less gifts under the tree, everyone was happy and at least for a little bit our worries were on the back burner. I personally could not ask for anything better than that. For those that have helped my family, I thank you from the bottom of my heart. Please know that even if my words might come up short, I am truly thankful. Without the help that all of you have provided I honestly don't know what we would have done. My families troubles are far from over, but your generosity keeps providing me with a glimmer of hope that we will pull through all of this! I am currently cycling through three different emotions; anger, sadness, and embarassment. The weird thing is that I am not feeling them all together but actually kind of switching back and forth between all three of them.
The reason for these three emotions is one person.... My two youngest sons had a choir concert today. Any more I am on the fence for any events. On one hand I want to go because I want to see kids perform or do what ever the event might be. On the other hand any event is a struggle. I can't really sit because I will start swaying in circles and my head/neck will start going crazy on me. I can't stand because I will sway uncontrollably and risk falling. So.... that leaves jogging. If I am going to make it through any event no matter how long it might be I have to jog in place. Honestly I hate the joggiing. My feet, legs, knees etc end up hurting. I don't want to be a distraction from my kids. I don't really like people staring at me and judging me. But in the end being there for my kids outweighs the negitives. I wanted to see them do the things that they love. Back to today. As I do with any event I had to jog in place. I made sure to stand off to the side, clear of any chairs to make sure that me jogging does not block anyone's view. I thought all of the kids did great and I really enjoyed their singing. As the concert wrapped up I was in a really good mood. In an instant that mode changed really quicky. A man approached me and asked why I was jogging in place. Not a huge deal. I told the guy that I have to jog like that to stay awake because I have narcolepsy. He followed up with, well that is very distracting when I do that. I told him I have to jog if I am to attend events like this. His response was to tell me that I maybe I should just move farther back then so I am not so distracting. At which point I stopped being polite. I was a little angry. I curtly told the man that if he can handle what I have to do, that is to bad. I then walked away. He tried to continue talking to me but I simply left the situation as to not cause a scene. I collected my stuff and went to the other end of the gym. Needless to say at this point I was beyond angry but again I did not want to cause a scene, so I just kept to myself and stayed away from everyone. Shortly after my family came over to see why I was away from the group and I told them what happened. In the mean time I was able to over hear the man and his family taking and they were saying that there is no way that I had to do that to stay awake. I could not hear their reasoning, but they clearly did not feel that I was telling him the truth. Shortly after that my wife went and had a discussion with this man and explained a little further about why I jog like that. Apparently he believed what my wife had to say because he came over and gave me a truly sincere apology. He went on to explain to me that his daughter has special needs so he understands how I was feeling. He just thought I was jogging in place for fitness purposes, even though I told him that was not the case and I have been doing this for over a year and he has seen me do it before. I do appreciate his apology but it did not help my mood any. So now I sit here cycling through emotions. I am extremely ticked at the entire situation, especially since this man suggested that I move to the back while my youngest was next to me, (my youngest was oblivious to the conversation but if he would have heard it he would have been upset). And apparently when I told him why I was doing it he felt that I was lying to him. I am embarrassed because obviously this family was paying more attention to me than the kids who were performing. No matter if it is my kids performing or not, the audience is there to see the kids no focus on me joggiing. I am saddened because once again my stupid health is having a negative effect on me and my family. Yes the man was being insensitive, in my opinion, but if I did not have this crap there would be nothing for him to be insensitive about. I really would just like one day to be normal or almost normal! Let me start off by saying I had a blast shopping with my family yesterday. We ate lots of good tasting food, did way to much shopping, and we were out the latest I have been in probably 5 plus years.
The second very important thing of note, I will go Black Friday shopping again. Hopefully next year we will be in a better position than this year and we will be able to be much more productive. Unfortunately everything is not peaches in cream. Obviously being a narcoleptic, being up from a little before 5am in the morning and staying awake until a little after 2am the next morning, is a bit tough. In the end I mostly tough it out. Say mostly because there were some tough moments. The first problem, all of the steps. As you know when shopping there is quite a bit of standing still. Some of it comes from looking at things and other times it comes from staying in long lines. Well, as many of you know, standing in place is not something that I excel at these days. I tend to wobble back and forth, kind of like a weeble wobble. Luckily like a weeble wobble I haven't fallen down yet. So to counteract the wobble and to reduce the risk of falling I have to jog in place. We'll after all of our shopping I ended up with just shy of 55,000 steps. All of the steps added up as the day went on. By the time the day was done practically every stop caused me pain. As my foot hit the ground shooting pain would start at the bottom of my foot and go up into my leg. As my weight started to shift onto that foot I would start to experience pain on three sides of my lower leg. No one pain but three seperate pains. The closer I got to having all of my weight on that leg my knee would start to throb followed up by shooting pains in my hip. If I did not have all of these stupid things going on I would be able to stand still with out constant movement. At best that would have probably halved my steps. Being that there have been months I have averaged over 20,000 steps a day, I would not have had to deal with even a fraction of the pain I was dealing with. BUT, I knew the pain was coming and in the end I refused to give into it. To me the trip was well worth that pain! I just wish I did not have to deal with it. The next issue was sitting. I don't really sit so well these days. First of, if I just sit and do nothing I am going to start to fall asleep. Obviously sleeping in a crowded mall why your shopping mates wait for you to wake up is not such a good thing. The other issue is that unless I am sitting in a recliner with the leg rest up I will start swaying. Add that to me starting to fall asleep and things can get really ugly. I start moving in almost a circular motion, my heads starts to randomly either droop forward or just fall back like I have no muscle control. As I can't really stand still, sitting would be a good break for my feet but alas, I can't really do that either. So my options are to move, move, and move some more. BUT, this is not something new, I knew this problem existed and I refuse to give in. To me it was well worth dealing with my difficulties sitting to have a good time with my family. I really wish that I could say that I only had to face those two issues but alas that is not the case. When we sat down to eat supper my dystonia decided to rear its ugly head. First I started swaying side to side quite a bit. If anyone was sitting next to me it probably would have looked like I was trying to play bumper cars with them. Ultimately that was just a nuisance because my head started going crazy. First it started shaking pretty fast, which really is nothing new. Unfortunately it did not stop there. My neck started to get stuck. And I really do mean stuck. On its own my head would move to an extreme diagnol location, think you head titled really far back and to one side. Once it got to that location my head was still trying to shake even though it really could not move any farther. At this point I am in quite a bit of pain. I have two options, try to ride it out or try and force it back to a neutral position. Well riding it out was not working, because I was trying to eat and I was in a lot of pain. So I would have to grab my chin and the top of my head and force my head back to its normal position. Now this is not an easy feat, it takes every bit of arm strength that I have to make it happen. Unfortunately less than a minute after getting my head unstuck it would it again. I don't think that I had and tears running down my cheeks, but I do know that a couple times my eyes were tearing up from the pain. BUT, as with my the other issues, I knew this might happen as it happens before, but I was not wiling to put my life on hold because of it. To me it was worth the pain to have fun with my family. The last major issue is my cataplexy. Thankfully Xyrem does a good job of reducing my cataplexy, (mostly my left knee buckles but both knees can buckle) but as I get more tired and fatigue the more it rears its ugly head. So as the night went on the more my knees buckled. Initially it was just once and a while and I managed it pretty good because I just just use my cane to support me. At this point of the day it probably just looked like I had a small hitch in my step. Unfortunately as we hit our last store of the trip I started losing the battle with my mind. The buckles in my knees were becoming much more severe to the point that even with the help of my cane I was not managing so well. Earlier in the day the buckles I took in stride, no slowing down I just kept on trucking. Well these buckles stopped me in my tracks. My guess is that if you saw me you would have thought I was randomly doing deep lunges. Aside from stopping me in my tracks these knee buckles hurt. My legs were already shot, having done 50,000 steps at this point, and now I have to try and stop my free falling body weight from hitting the ground. Luckily I stayed upright every time but the stress of stopping my weight was really putting the strain on my knees. BUT, this was not a surprise to me. My knees randomly buckle everyday and any time I really push, in the end my knee buckling gets severe. In the end I refuse to give into my medical issues and simply put my entire life on hold and simply turn into a hermit. I guess I have to points to this LONG blog. The first is that I DO have some pretty major issues. Unfortunately most people see me doing what I do and think I all good. They see me jogging in place and assume I must be healthy. Many times even when I am dealing with my issues they just think something odd is going on. Maybe it is my fault that people think I am able to work and I am not sick because I do everything in my power to put on good face and hide as much as I can. But in the end I know that is not the case. While I might be able to hide and mask things for a little bit, no matter how hard I fight, my health issues will rear their ugly heads and they will stop me in my tracks. The second point is that no matter how hard it might be, I will never give into my crap. I will fight it tooth and nail until the day I die. I will do everything within my power to live my life to its fullest and to ensure that my family can do the same. Yesterday I knew I was in for some rough moments. I knew that by the end of the day I was going to be a mess and I did not care. I had a blast being ME! That silly guy that tries on all of the silly clothing. That guy that messes with everyone, maybe by giving them a hard time, or scaring them, or what ever I deem necessary to get them to really smile. That guy that is wiling to take on a really long shopping trip with his wife and not complain to much. :) I might not be able to recaptare all of the things that my health has taken or even be that silly guy as much as I use to be. But in spurts I can still be "that guy" who can make everyone smile and have a blast doing it. Take that narcolepsy, dystonia, and whatever else I might have going on, you have not beaten me and you never will. You simply don't have the power to take me down, if nothing else I am simply to stubborn to "cry uncle"! This blog title makes me think of an 80's commercial.... Where's the beef?????
Anyways, many have asked what happened to my blogs? Well, my goal with blogging was to be something that people could read that could help them. Sure there was occasionally some negative things but I tried to stay positive and upbeat. I do not feel like people reading negative blog after negative blog will help people. In some cases it could bring people down instead of helping them. So what happened to my positive attitude? What happened to me being a glass have full person? It seems like my life does nothing but throw me curve ball after curve ball. I have tried to attack all of these curve balls like I have everything else in my life, with hard work. I have done everything in my power to communicate with my doctor everything that is going on with me. My thought was that the more he knew the better opportunity that he could help me. The problem is half the time it feels like he is attacking me, not helping me. It feels like one of the previous doctors that I saw. Once he got stuck he just kind of stopped trying and became a jerky instead of trying to dig deeper. The weird thing is that while sometimes he seems to be standoffish, he will quickly flip a switch and be on my side. This man is supposed to help me out but I don't know what I should tell him or if he is on my side at any given moment. In terms of my applying for disability I keep getting denied. I have been denied twice now and my last appeal is officially filed. The problem is, if I take the most aggressive time line that my lawyer provided me I am looking at 21 months before I would see any money from disability, assuming of course that I am approved. I am already 11 months, closing in on 12 months, into this process. There is no way that my family is able to stay in our house for another 21 months with no income. Honestly I am not sure that we make it even a couple more months. The city has put a lien on our house because we have not been able to pay our water bill. We are two months behind on our power bill. We have applied for energy assistance but we won't know until next month if we are going to get it. Problem there is next month is the cut off for when the power company can shut off our power for the winter. If it takes to long to here from them we might miss the cut. Then, no power, and we will no longer be in our home.... I understand the disability process being difficult. You don't want everyone getting disability benefits. But this process is just down right ridiculous. If you do just a little bit of research you will find that the majority of people are denied through the first two steps. If you are lucky enough to be able to keep pushing and make it through to the hearing then the majority of people are approved there. But you are looking at 24 - 36 months. I don't know many people that can continue to support themselves with no income for that long and not lose everything. Sure if you are approved you get back pay, but if you lose everything that back pay won't help to much. The doctor, the disability process, and my family's finances is not the only thing on my mind. I am doing my best to get myself in the best physical shape that I can. All and all I think I am doing pretty good with that. I am down 26 pounds, I can do 57 push-ups in three sets, and while my gut does not look like it my abs are in pretty good shape. Unfortunately even though I am in better physical shape it is not helping with my illnesses. At least once a day I crash to the point where I can barely walk across the room. During these crashes it is all I can do to kind of drag my feet along none the less do anything else. I am still swaying when I stand and sit in a standard chair. It seem like no matter how hard I try I can't seem to get a break. I have contact more places than I can count to try and get help with our finances and other than a couple instances all I do is strike out. I honestly can not work, my doctor has even documented it, and I can't seem to find programs to help us out. I am working my butt off to get myself into shape in hopes of making my symptoms better and yet they are not improving at all. Growing up my goal was to always have a happy stable family. I never wanted my family to have to go through the things that I went through going up. I wanted them to know one places as their home and to not have to worry about anything other then their education. So far I have kind of done that. My wife's and my illnesses have put more stress on them they should ever have to face. Heck they have seen more stress than many adults ever do. My biggest fear is that I won't be able to keep my family in their home. If we truly have to wait 21 months before we see any income, there is no way that we will be able to stay in our house. If that happens I will have failed at one of the most important things to me personally. There is no stability if you have to move out of the only home that you have known. Losing that kind of stability certainly will take their focus off of their education, you know the only job that they really have. All three of my children truly have limitless potential and if they lose their stability, they will struggle to reach that potential. If that were to happen I would feel like a failure! I still wake up everyday, I still fight my stupid illnesses everyday, I am still working hard to get myself in shape, but I feel like I am facing an endless batle. It feels like no matter how hard I fight, in the end I am going to lose everything that my wife and I have built. It feels like no matter how hard I fight, in the end my children are going to face a life of uncertainty. I don't know how to be a happy go lucky person, a glass half full person, when it feels like my glass has a hole in the bottom of it and all the milk is pouring out! Everyone likes football right?
Well I know that is not the case because my wife hates football, but I am a diehard football fan. I have been a fan of the Detroit Lions since I was a young kid.. My family was living in Lansing, Michigan during Barry Sander's heyday. I have been a Detroit fan ever since. I am that fan. Even during the year that the Lions lost every game I still wore my Lions gear. I am a loyal fan to say the least. Today was the first Lions vs Packers game of the season. Normally I don't get to watch much football as we don't have cable anymore but today I did. My family and I started watching the game after the second quarter. By half time my wife and my middle son had to leave. This left my youngest boy and me to finish the game up. Ultimately the Packers won the game but that really did not matter. I really wanted to watch the game so I did not use my tablet at all. That meant that I would have to move through out the entire game. To break up the monotony of jogging in place I decided that I would do 10 push-ups during each commercial break. After 150 push-ups I thought that was good enough. My youngest son apparently took my push-ups as a challenge as he one up'd me. He not only did 150 push-ups but he added 50 sit-ups. The little snot head. After the game was done we watch about an hour of the next game. My feet and legs were getting sore and tired so my son came up a game to keep me going. We ended up playing catch with a tennis ball. He came up with all kinds of little games. For that hour I was able to stay awake and not have to jog in place, I definitely can not compain. For me sports are so much more than just a silly game. They provide me with a method to interact with my family that is not only fun but effective at keeping me awake. They provide me with a means to connect with my kids. My middle son is the only other person in my family that is also a Lions fan. They also have provided me with many good memories. There are the silly memories that mean nothing to anyone else but myself. For instance I still remember a Lions vs Bears game where Barry Sanders was rolled over a pile of what seemed like the entire Bears defense. His feet hit the ground and his scored a touchdown while the Bears looked on in horror. There are the memories with my famiy. Like the multiple games of charity kickball that we took part in. Probably the most lasting memory there is me wearing a hula skirt and bowling over the second baseman to reach base safe. There are the everyday memories when my boys do something cool. My oldest son out muscling me for a ball, my middle boy blasting a soccer ball so high and far I can only watch it sore over my head, my youngest son showing up the adults with his volleyball skills, and my wife and I playing volleyball together and managing to keep the ball going longer than we ever do in a larger group. I started this blog talking about football, but as of can see to me sports in general are a big part of my life. No one in my family is a pro at any sport and that does not matter. Sports gives us countless things that we can do together, that are free and at the same time keep me awake. Sports helps me connect with my family. Sports keep me awake. Today watching the game with my family simply helped remind me how much sports have done for me, the funny thing is that I have never really played much formal sports aside from being on a couple weekend sand volleyball teams. The funny thing is just writing this blog I kind of felt some weight lift from my shoulders. Nothing is fixed, but while writing this I had lots of very good memories come flooding back. I am not out of my funk yet, but a silly football game just might have provided me with the first steps of getting out of it. I have been in a real funk lately.
I wake up in the morning exhausted like I never slept. My entire body hurts from my toes to my shoulders. I feel like everything is starting to unravel. I have been denied twice for disability and now we are in the process of appealing for the second time. Of course everything that I have read says that it will be at least a year before I will have my hearing. On top of that my doctor, the one that treats both my narcolepsy and dystonia, is being a complete wanker. I have no idea on how to read him or even what is goal is. But I feel stuck with seeing him because I don't have many options left the UW system. Plus changing doctors could throw a monkey wrench into my disability case. I have pretty much just been coasting through the day. I do the things I need to do, but it is more on autopilot than anything else. I have had no drive to blog, my mind has been a blank on new topics and in the big scheme of things I just don't want to do it. I have forced myself to do a couple things around the house but it took every bit of my will power to follow through with it. Tonight my wife and I watched the newest episode of Chicago Med and a scene really caught my attention. A father had just been pronounced dead in his hospital bed when his daughter and just born grandchild were wheeled in. The man woke up from the dead to see his daughter for one last time and to see his grandchild. Then the man gave up his fight to live and he passed away. This was an extremely powerful scene. Those that know me well, know that normally I would tear up over a scene like this. But today, I simply registered it, and moved on. No tears, no pulling at my heart, just a hmm that was powerful. Needless to say my funk has a pretty solid hold of me. I continue to wake up everyday and constantly fight my mind, you know that thing that constantly tries to put me to sleep and to move body parts that I don't want to move. To me there is no other choice but to fight. I have way to much to fight for. But I feel like I am losing me. That easy going, silly, softy of a man. That guy that is not afraid to tear up at a movie. I feel like I am putting so much into fighting my illnesses that there is nothing left for anything else. I need something positive to happen to my family. Something to show me a light at the end of the tunnel. Maybe that will pull me out of this funk. I don't like coasting, I don't like living life on autopilot, I want to be me again! Sometimes I think people are confused about what a person with a chronic illness wants.
It is not common for a person with a chronic illness to be told that they are lazy. That they just are not trying hard enough. That maybe if they were to just suck it up they could be normal. I can tell you that none of the above are true. I for one can no longer work. Many days just the act of loading the dishwasher wipes me out. So much of the day it appears as if I am doing nothing. That I am just giving into my illnesses. If someone truly believes that they would be sadly mistaken. People wth chronic illnesses are fighting 24/7. Most times they focusing almost all of their energy to hide their symptoms because they don't want people to think less of them. Some days they will do everything in their power to mask what is going on in their lives. They don't want people to feel sorry for them or to have to try and explain what they have going on. Many people with chronic illnesses wish they could simply do the small things in life. They would give anything to be able to clean their entire house again without completely wiping themselves out. They would give anything to be able mow the lawn again. If they can't work they rack their brain everyday to try and figure out how to get back into the work force. Kind of funny isn't it. People with chronic illnesses want to be able to do the things that their naysayers complain about. They want to be the person everyone else thinks that they should be. Strange thought isn't it, they want to be able to do the things that they are being tore down for not doing. So the next time you think someone is being lazy, think twice before you say anything. You don't know what that person is going through. It is very possible that at the very moment you think they are being lazy, they are put every ounce of energy that they have into just staying awake. The old adage, "Don't judge a book by its cover", certainly applies here. At my last job I work with a great guy that had a funny take on doctors.
He always said that doctors are said to be practicing medicine because they really don't know what is going on. So when they see us they are just practicing and hoping to get it right. While I know this is not the case it sure does feel that way. Today I had a follow up with my neurologist in regards to my swaying while standing and my new leg spasms. Well I left the appointment mad. Aren't you supposed to leave a doctor's appointment feeling better. I swear my doctor is like Doctor Jeckle and Mr. Hyde. Once sentence it feels like the guy is attacking me and the next sentence it feels like he is on my side. He says one thing that makes you think OK we are getting somewhere and then the next you are back to scratching your head. I have been swaying while standing for over 2 years and I still have no solid answer what is going on. My leg spasms are becoming quite a pain in my everyday life and yet leaving the doctor today I am still just as perplexed about what is going on as I was walking into the door. I swear once you get a doctor stumped everything changes. They go from wanting to help you and be the hear to big gains jerks.... When I was working I like the occasional challenge. Those challenges helped keep me on my toes and helped keep me grounded. They also pushed my abilities and helped me grow. In my job I could not turn my nose at them, I had to step up and figure them out. Just giving up or being a jerks about it was not an option. How come in the medical field when a doctor feels like they might be stumped they just want to quit. The only savings grace of the entire appointment is that my doctor actually told me why and I that he did not feel that I am employable. While those words do sting a little, I can not lie, but in terms of my disability case they can't hurt. Of course only if he documents it... Tomorrow will be a better day, it has to be because, well it is a new day! Outside of the obvious health effects what other lasting effects will my health problems cause?
The obvious place to start would be myself. Sure my health blows but what else is messed with. As a parent I struggle every day with not being able to no longer provide for my family. Every day I worry about if we will be able to stay in our house long term. I worry about turning into my mother and having to move my family all the time because something new went wrong. I worry about all of the things that my family has to take over doing because I can no longer do it. I worry about the the additional stress my wife is under because she is worried about me. Unfortunately all of these worries just add to my stress level. Sure I don't "feel" the stress because I am a weirdo but my body still feels the stress. We all know what stress does, it makes things worse. So while I might not personally feel the stress I can fell the increases in my ssymptoms. But I am just one small piece of the puzzle. What about my wife? What lasting effects does my health have on her? Her responsibilities in the family have increased greatly. She has to pick up a lot of my slack, not that I am doing anything wrong, simply put there are many things that I can no longer do. For instance I use to be the family driver, if we went anywhere as a family, I drove. Now that falls on her. She also worries about me. She worries about how stress is effecting me and that stresses her. She worries because she wants to be able to help me and neither of us know how to "fix" me. This adds more stress to her. Of course I am not the only one with a nasty illness in the family, she has one herself. All of this additional stress is simply exhausting her. In the past I would step up and help her out but I no longer have the ability to do that. What happens on those days that she is completely wiped out and I can't lift her up? What do we do then? Of course in my house my wife and I are only half of the equation, we still have our two youngest sons with us. They are under more stress than any child should face. They are watching their father fall apart in front of their own eyes. They are worried about what is going to happen next. What is next catastrophe going to be? As children they should not have to worry about this, their only worries should be done good in school and learning how to become upstanding adults. Instead every day they are facing real world adult problems. Problems that many adults will never see in their lives and my children are dealing with them now! This additional stress expand beyond my own household. My sister has taken on a large burden in helping my oldest son attend college because my wife and I can not do that. I can not even begin to guess what is going at my wife's mother's house.... I have seen countless memes that say something to the fact of, "You are only given what you can handle". Those memes are a bit short sighted. Maybe, just maybe, you can handle what is going on, but what about everyone else in your lives. Can they handle it???? When people think about invisible diseases or illnesses they tend to think about the person that has them, but that is only a very small part of the equation. It is not just the person that is sick that is effected, but everyone in their family and their friends. Luckily for me, my family has been very supportive. We are facing all of this together as a team. On the days that one of us is down, there is always someone else to pull us up. On the good days we do our best to be normal. For instance today we went out for supper, (we had gift certificates that my middle son won at the dystonia walk), we went to the park and played, (I can still take my youngest boys in a race), then we had icecream, (the boys won gift certificates at a school carnival). We had a good day! Sure I was dragging by the end, but it was well worth it. At the end of the day, it is important to remember that more than one person is effected when a family member has something go wrong with them. What ever is hurting them cascades throughout their entire family and through their friends. Don't forget about everyone else, they are hurting to! When I am asked how I am doing I have a pretty standard answer.
"Still Kickin" or "Still Moving". To me that is the best answer I can give anyone. My stuff is not going away and the majority of the time I am fighting. But it does me know good to complain because that is not going to fix anything. So I give my standard answer. And in the big scheme of things as long as I am kicking/moving I am doing as good as I can do. Movement is what keeps me going. So if I am doing well enough that I am still moving, I am doing as good as can be expected. Nothing that I have going on is bad enough that I can't move. I am sure that some people are curious, how much movement do I do? Well currently I am averaging about 20,000 steps a day, that is the equivalent of 10 miles a day every day. Now these steps are not just a casual walk or kind of shuffling my feet along. I am talking about enough movement to get my adrenaline going. I can do this by jogging in place but within the first 5 minutes of starting my jogging in place I start to sweat. Normally within 30 to 40 minutes the back of my shirt is starting to really absorb my sweat and if I am wearing something like our would start to see my sweat stains. If I go somewhere other than my house my only real option is to keep moving. So if I go to one of my children's events I am going to be moving until the event is over. Take for instance the day my oldest son graduated. I stood on the metal bleachers and jogged in place for over 4 hours. Luckily there was rain and some wind so I did not get to hot. The worst part is that it does matter what I am doing I must keep moving or pay for it. Take for instance this weekend. I participated in a 5k to support dystonia. I ran/walked the 5k in 35 minutes and 14 seconds. While not world record time I was whooped when I was done. I sat down for a couple minutes to drink some water and catch my breath. Well that couple minutes was to long. My neck and leg started going crazy. So once they calmed down, I stood up and started jogging in place. There is a positive side to all of this movement. My calves are monsters. There is not an ounce of fat on them. I have the stamina to play sports or jogging in place that almost never ends. Even if I hit the end of that stamina, I suck it up and move anyways. The consequences of not moving are a little to extreme to slow down.... Some have asked if I think I can keep doing this forever. Well honestly know, but really does it matter. The movement is what I most do for now. I will deal with later, later, because the now is what is right in front of me. In the end my message is probably different than you might think. It has nothing to do with my movement, but with my answer. Some people assume that I am blowing them off with my simple response to their how are you question. But in reality I am not. If I am still moving/kicking, then at a minimum I am having an OK day because I have not succumb to my illnesses and I am still fighting. The day you get a different answer for me is the day that maybe something is really wrong. So when you ask someone how their day is, don't assume they are blowing you off with what you feel is a silly answer. That answer may have much more meaning to it than you know. That answer could be telling you a whole lot if you just look a little deeper. Today was the Stomp Out Dystonia 5k in my town and I did it. I completed it.
My time was not a world beater time, but it was not to shabby. I completed the course in 35 minutes and 14 seconds, that is the equivalent of a 11 minute and 20 second mile pace. Being that I just started to get back into running about 5 weeks ago I think I am doing pretty good. Of course completing the course did not come without its negatives. Once I completed the course I sat down to drink some water, bad call. Within a minute my head started going on over drive, it even decided to get stuck at one point. Luckily I was able to force my neck out its stuck position. Of course then my right leg started going crazy. Those two things were the least of my worries. Walking to the car was an experience in itself. Both of my legs started going crazy. In the moments that they were not going crazy my left knee would buckle. Needless to say it took me quite a while to get to the car. In the end I made it under my own power so all was good. Getting home was also a treat. Both my legs were spasming at the same time and walking was not going so well. With the help of my wife I got myself ready and I took a nap. I did not get a long nap but I did get some sleep. You would think that after all of the difficulty after the run that I would regret doing it, well that is not the case. If there was another run that held personal meaning to me tomorrow I would do it. My health has taken many things to me, but I refuse to bend to its will. I will fight it with every part of my being because I refuse to let it beat me. Actually I think it is good for me to stuff like this. People can kind of see parts of two different worlds wth me. When I first get there they see me constantly moving but at first glance everything looks ok. Afterwords they get a glimpse into what can be. Into how my illnesses can really affect me. I don't say this because I am looking for pitty, but because in many cases people don't see the really bad times. They just see me always moving. Days like today tend to make my invisible illnesses very visible. Today I feel very proud. I did better than I thought I would on the 5K and I did not let my illnesses win! They might have slowed me down a bit but I over came them! Asking why can be a very dangerous question.
It is very common for people with chronic illnesses or when bad things happen in someone's life to ask why is this happening. The majority of the time when this question is posed people tend to focus on negative things. They ask if they did something wrong. Maybe they should have done something differently. Or what do they need to change to make everything better. The majority of the time these questions tend to lead down bad roads. I guess we should not ask why then right? Not exactly! Asking questions is ok just ask a little different question. Instead of asking why, ask what. What should I do now? The point of this question is not to dwell on the negatives but to focus on the future. What can I do now? See, the point of this question is not to look at you might have lost or what you used to do, but to focus on what you are going to do. Let's use me an example. Most of you know my story, short version, I have narcolepsy and dystonia and I am attempting to get disability benefits. Many, many things have changed in my life and in some cases are still changing. If I asked the question why, it would lead to nothing but pain and agony. But if I ask what now and focus on positives I can change a negative into a positive. So let's try that. What now? Instead of taking a back seat in my children's lives I can now sit in the driver's seat. When I was working I was an involved parent but there were many things that I missed. In some cases even when I made it to some events I was not really there because work was on my mind. Now all I have is time. While things might be tough and some times the events are hard on me, I am there. I am only focusing on them. Before all of this, I would have never had this opportunity. When I was working I had little time to spend with my wife. Between work and trying to be involved with the kids we had very little time together. On top of that much of the time that we did have together I was exhausted. Yes I have more struggles than I ever had. Yes every day is a battle for me. But each of those days I get to spend it with my wife. Before all of this I would not have had this time with her. I could go on but I think I have made my point. Yes, things in my life are extremely difficult. So many things have changed in my life that it is mind boggling, BUT all is not lost. While multiple doors have been slammed in my face other ones have been opened. I also know people that have been diagnosed with a chronic illness and remade themselves. I know multiple people that have turned to the arts. One has their own online store where they sell their art. Another has taken up painting and teaching others how to paint. Many other have started running a business from their homes. They have turned a negative into a positive. So on your worst days instead of asking why, ask what now. Instead of focusing on what used to be focus on what you can do now. I will leave you with one last parting thought... Tomorrow I will be participating in a 5k for dystonia. At one time the organizer of the event struggled to eat, talk, or see. They were in a bad place. Today they are working and organizing an event that as of today had over 70 participants. They could have asked why but instead they asked what now. They are doing things that no one ever thought that they could. Remember the why is probably not important, that what now is really what is important. This Saturday I will be taking part in a 5K run/walk.
The 5K is to help raise money to increase awareness and find a cure for dystonia. I have a particular interest in this walk because I have been diagnosed with cervical dystonia. It is also possible that I might have a couple other forms that I yet to be diagnosed with. Dystonia is an incurable neurological disorder that can make parts of your body either move uncontrollably or get stuck in one position. For some it can be extremely painful and for others it is not. I don't really have any way to explain how it feels when your body moves without you wanting it to. In my case when my head is really going there is nothing I can do about it. No matter how hard I try my head just continues to move. On my worst days my head will move to an extreme position and then try to move even farther. I have tried to take both of my hands and physically force my head to move out of this position and I don't have enough strength in my arms to do so. So Saturday I will take part in this even with pride. I definitely won't run a good time as I am just getting back into running but I don't care. Just taking part in the event is all that matters. I do have some concerns about the 5k. I know that I can move fast enough between jogging and speed walking to keep myself gong. This is important because if I don't go fast enough then my knees might start buckling, this because of narcolepsy. My concern is what is going to happen once I complete the 5k. Normally after I exert a lot of energy the moment I quit I quickly start to crash. Standing in one place because quite a chore because my swaying when standing gets pretty bad. My head will start moving like it is in overdrive and I am pretty sure that my left leg will start spasming quite crazy like. Another thing that is rolling around in my head is that I keep being told that I should not do things outside. I should not run around with my kids. The reason I have been told this is because I am in the process of applying for disability. Doing something like this could be construed as there is nothing wrong with me. Well you know what? I don't care how I will feel after the 5K. I don't care if the wrong person sees me. This event is for a good cause that means a lot to me! I can not lie I have been having a tough go at it lately. But not all is bad.
I have been trying to get myself into the best physical shape possible. Because of medication issues and a broken ankle I had really slipped from where I was about 9 months ago. To do this I have been trying to up my step total, (that is not real hard as movement is the only sure fire thing to keep me awake) and I have been doing arms and abs at night. The best part though is that I am not doing this alone. My youngest son joins me almost every night doing arms and abs. But he is not just there going through the motions, he is trying to push both of us. On the days that I don't really want to do my exercises he pushes to make sure that we get it done. Other days he is the one trying to make sure that we push when exercising. For instance today we were doing our "special arms". In all honestly I just kind of came up with two different sets of arm exercises. That way we don't get bored and arm muscles don't get use to what we are doing. Today's push-ups are not the standard push-ups but we put our feet on an end table. Today he decides that he was going to up the amount he was doing. Of course I can not let him do more than me, so I keep pace with him. For triceps we use the same table and complete triceps dips. We use pretty solid form and go slow. After the first set he was talking about add more reps. I didn't really want to add more as it was triceps but after the second set he brought it up again. SO.... We double the total for our last set and you know what, we both did it. Did it hurt, ohhhh yeah, but we did it. It is crazy to think that my 9 year old son is my driver to keep working at getting healthier, but he is some days. Many days he is not necessarily thrilled to be doing the exercise but he makes sure we do it none the less. I think for him just doing something with daddy is enough driving force for him. On my end because I am working out I get enough adrenaline going that it keeps me awake. So not only am I doing something with my son, but while I am doing it I almost feel normal for a little bit. So while so many things are going haywire in my life, my youngest son has found a way to make me feel normal for a couple minutes everyday! It is a horrible feeling when the symptoms from your illness scare your children.
My family tries to eat supper at the dining room table as often as we can. Lately our lives have been crazy and we have not managed to do it much but tonight we did. Now eating at the table can be a chore for me but we feel like as a family it is something that you should do. Unfortunately today was one of those days were eating at the table was a chore. My neck started going bananas on me, it was turning to either side quite extremely and getting stuck. Plus I was really rocking in my chair. After we got done eating I actually had to sit in my chair holding my head in both my hands for a bit to get my head to settle down. Finally my head settled down and I got up from the table to go sit in my chair. Getting to my chair did not go as planned. First my left leg started acting up, pretty much my muscles from my knees to my toes just kind of go crazy. I waited out the spasm and kept walking and then my knee buckled. I reached the door way between the kitchen and our living room and I had to stop because my leg started going crazy again. I was attempting to wait it out by standing still but that caused me to sway backwards. My youngest son was behind me and put his hands on my back to keep me from going to far. As my leg was still going crazy I just leaned forward and leaned against my hands on the doorway. I don't know how long I stood there but I had to stand there for a bit because my leg would not stop. The worst part is that my youngest son was getting scared. My wife tried to get him to do something else and she would help me out but he did not want to leave me. He was afraid something would go wrong. Finally my leg calmed down and I got to my chair to have my leg flair up again. Finally I sat down and off the races the thing went again. I looked up to see my son looked at me with terror in his eyes. He did not say a thing but I could tell he was scared something bad was going to happen. I am at a loss for what to do. My symptoms are getting worse. My leg started as a very rare thing and now it is happening multiple times a day. If it follows the same path as my neck, it won't be long and my leg will be going crazy more than not. On top of that the other day I had an event in my right arm. I was standing in a corner using my arms to support myself, (I was tired and I needed a break from jogging in place). As I was supporting myself my right tricep started to tighten and relax over and over again. I am afraid that this is going to continue getting worse like everything else has. The thought of that scares me, but what it will do to my family scares me even more. I don't know how my youngest son will take it if both one of my legs and arms goes crazy on top of everything else. I am pretty sure it will crush him. I go back to my doctor on the 21st and hopefully he has some suggestions. It is bad enough that narcolepsy has already stripped me of so much but now dystonia, (I assume but won't know until I see my doctor) is starting to take even more things from me. At a minimum I need answers of what is going on but hopefully I get some reprieve from the symptoms also, this continued progression sucks. Today was simply heartbreaking.
My wife and I have been helping a great elderly women out for over six months now. Her husband passed away early this year and she needed help. Our entire family stepped up and help her with little daily chores mostly. Things that she just could not do anymore. My wife and I also helped with getting her to the doctors and out of the house. All and all pretty manageable things. In May she got a sore on her leg that still has not healed. She has been a fighter while dealing with this sore. Her doctor and primarily her at home nurse have tried countless things to get this thing to heal. Finally recently someone stumbled upon the right treatment and her leg is making great strides. Unfortunately the rest of her slowly started to break down. The fight in this women is amazing. Even while dealing with an injury that has last almost four months now and her legs failing her she kept fighting. The only thing she really wanted was to stay at home. She had a bad taste in her mouth in regards to nursing homes and she adamantly did not want to go into one. Because she is a fighter even with everything she had going on, she was making it work with our help. Over the last week, fighter or not, she started to lose more and more of her mobility. Just a month ago she could get around her house, getting herself in bed, go to bathroom, whatever on her own. Over the last week she quickly lost this ability. She continued to fight with all of her heart because she wanted to stay home. But you could see it in her eyes that she knew things were getting bad. Just talking about the possibility of having to leave she would start to tear up. Well, today, it reached the point that my family could no longer keep her in her house. She had to go to a facility that can help her on a 24 hour basis. I swear when she made the decision that she had to leave you could see the spirit drain out of her body. Her eyes welled up with tears and her body language changed. She put on a great face and never broke down, but I know her heart was breaking. On top of all of this, her worst worries, (at least that she verbalized) was about her cat. She did not want to leave her cat. She did not want him to be alone. She was just broken up about her cat. It is just amazing that this women, who can no longer stay in her own home, is more worried about her cat. My wife and I, along with a friend of the eldery lady, help her settle into her new surroundings. Once we got her there she was fed supper and she ate with vigor and drank more liquids than I have ever seen her drink before. She said all of the right things, put on a strong face, but her eyes told another story. She was crushed that she was no longer at home. She is in the best place for her in safety purposes, but in terms of her mental health I don't know if that is the case. She is a strong person and I hope with time that she comes to like her new surroundings. She is a great person and she deserves to be happy. She deserves better than this. On the bright side at the facility she is currently at she can be visited by her cat. Not tomorrow but the next day we will be taking her kitty up to see her. If nothing else I know that during that time she will be happy. Hopefully that happiness will help pull her out of her sadness! Today was simply heartbreaking! I know I had said this before but the disability system is broken.
I have now heard countless times that the system is setup to get people to stop following up with their claim. A large majority of people that apply are denied on their initial application and then their first appeal. Everything I read says that the reason for the denials is that the government wants those who are applying to give up their attempt to get disability. The reason for the government trying to get people to give up, there is not enough money in the program to cover everyone. So their hope is that as long as the majority give up then they will have enough money left for those that stick it out. The problem with that hope is on average it takes a year to make it through the initial application process and then the first appeal. So if the majority of people that go through this process quit, that means the majority of people go at a minimum with little to no income. Yes, in theory you can get a job, but most people highly suggest that you do not work during the application process because if you are working then obviously you are not disabled. On top of that many of the people are applying because they can not work. So a year with no income and then nothing. I don't know many families that can go a year minus one person's income and then magically recover from it. Especially if the person that is not getting the income truly can not work. Then we wonder why so many people in this country are deep in debt. I for one have no choice but to stick it out and go file my last appeal. Big problem there is, on average it takes a year to get to your hearing to complete the appeal. So now you have to figure out how to keep your family afloat for 2 years with no income. The stress of trying to live on nothing is going to do nothing but increase and heighten what every is ailing the person that is applying for disability. That is not the worst of it. It has been suggested to me multiple times, justifiably so, that I don't make my blogs public, that I don't make it known that I use movement to stay awake. The reason, because the government can use anything against me to deny my claim. Unfortunately I know these people are probably right, but what is a person to do. Do I stop moving, well if I do I am pretty much going to be sleeping 24/7. If I stop moving I can kiss any kind of physical fitness goodbye and that is only going to make my symptoms worse. BUT, if the wrong person sees me moving, too much, it can be used against me. What a catch twenty two, I either do what I need to stay awake and put my claim at risk or I just succumb to my symptoms. How about my blogs? Someone might say that if you can blog daily than why can't work. Never mind that normally my blogs take about 30 minutes to right and the entire time my head flops around like a fish on land. Never mind that to blog I have to be reclined in my recliner and have the TV on. If our take away the recliner I will rock around in my chair way to much to even attempt to blog. If you take the TV away I will slowly fade away to zombie land. Even reclined with the TV on I still fade, it is just a little slower. Finally my blogging is currently the thing that I found to kind of replace the void of no longer working. So should I just give that up and slowly allow my mind to eat away at me because I would not want to hurt my chances at getting disability. The people that have given me this advice were spot on with what they said and why they said it. The problem is I can't give up my blogging and moving, my illnesses have already taken so much away from me, I can not loose these two things also. It is hard enough as it is, who knows what my mind would do to me if I gave up these two things. I really hope that I get to my last hearing much faster than a year and that I am approved. In the mean time as much as it might hurt my case I can not give up moving and blogging. I can not let a messed up process take away from me the few things that my illnesses haven't already taken from me. Having your picture taken is an easy thing, right?
Maybe for the average person that might be the case but for others it might not be. Sometimes it is extremely difficult for the person that is having their picture taken. I know that might seem like a strange thought, but it is true. I will give you a couple examples of how getting your picture taken might be difficult. For the first example I want you to imagine that it is very difficult for you to stand in place. When ever you try to sand in one place you sway forwards and backwards. Many times you sway so far that you have to grab something to keep yourself from falling. So now I want you to try and stand perfectly still and not move while your picture is taken. Don't sway, don't fall, don't move! For the second example you now also sway when you sit in a chair. When sitting in a chair that is not a recliner you sway forward and side to side. Picture time. You have been placed on a chair and you have friends to either side of you. OK, smile big and remember don't move. You don't want the picture blurry. Dont sway to far you might fall out of your chair. Stop moving, smile, what are you doing..... For the last example the problem you now face is that your head moves uncontrollably. You don't want it to move but alas that does not matter because it is going to move. Your head might droop forwards or fall to the back. When it is not moving forwards and backwards it shakes side to side like you are saying no. Picture time! Don't move your head now. I know you can stop it but stop it already! Come on now you are making the pictures blurry. Finally, you got a good picture, or is it. Your head decided to move backwards at the last moment and in the picture you look kind of crazy with your head tilted back. The worst part of those three examples, they are all real life examples. They are all things that happen to me. When my family tries to take pictures with me in it, it is like an Olympic sport. Everybody get lined up, I move in last, and then the person with the camera has to hurry and take a picture fast. If they are not fast enough I will start to sway and/or my head will go crazy. If I am the only person getting my picture taken you have to go even faster, because there is no one around me to try and support me. Man pictures are so much fun. At the end of the day, I know pictures are an important part of life. If nothing else they can be used to spark old memories that you might have forgotten. I know for me as my memory seems to get worse pictures are a blessing. My memories are not gone I just can't seem to access them, seeing a picture finds the memories at least during the moment. I think the biggest thing to remember is that it is difficult for some people to have their picture taken. If you are taking pictures of someone like this try to make the pictures go as fast as possible and remember that they are trying their best. Unfortunately sometimes people don't have control of their bodies no matter how hard they might try. Such is my life lately, take one small step forward and then three giant steps backwards.
Things were kind on a uptick for once. My oldest had started his first day of college, my disability claim was under review, and I had an OK day instead of crap. But I should have known that things in my life just don't go good these days... I knew the chances of my disability appeal were slim to none but I was trying to be hopeful. Between the help of family, friends, and a GoFundMe page my family paid our August bills. We also have the money for our September mortgage payment. We do not have the money for all our bills for September but we had the big one covered. If my disability claim was approved this month we just might have pulled through this hole mess still standing on our own two feet. But those hopes did not come through. Today we got a letter from the state. My gut said it was my second denial and that is what I told my wife as she opened it. Believe me I wish I was wrong but alas I was not. I was once again deny my disability claim because who ever reviewed it felt I can still work. Please tell me what job I can do when I have the following going on: -I can't stand still in one place because I sway back and forth, I use a cane to lean on to provide support -I can't sit in a standard straight back chair because I rock all around -I can't drive because a couple minutes in a car and I am falling asleep -Walking at anything less than a mall walking pace and my knees will buckle -Dory on Finding Nemo has a better memory than me -I slip into automatic behaviors much more than I am willing to admit -Now I am getting "tremors" in my left calf and foot I have more issues but that is enough. I truly want to work. I wish I could be that person that I use to be. I was able to provide my family with enough income that we were not in need of anything. We did not have a lot of extra money but we were doing OK. If we went anywhere, I drove us there. Unfortunately my health has taken away from me the ability to do these things. For 19 years I worked my hardest to provide for my family. I worked my way up the ranks to become a manager before I received my degree. It did this all through hard work. But now all the hard work is going to be for nothing. We are looking at around two months to get my next appeal filed followed up by an average of a one year wait before the appeal is processed. I doubt we can pay our bills for another month nonetheless 14 months. What do I do now? How do I keep my family afloat now? How do I keep my kids in the only house that they have ever known? How to I maintain my own sanity knowing that right around the corner everything that my wife and I had built is going to crumble? How can I continue to teach my kids that hard work pays off, when in my own life that is proving to be false? It is bad enough that it feels like my health has stripped me of so many things, why do I now deserve to be kicked while I am down? It is bad enough that my health still seems to he sliding backwards, I did not need that extra kick. The worst of it all, that hard work that I prided myself on for so long, can't help me now. What do I do now? Today started off not much different than most days.
I took my second dose of night time medication almost three hours late so I did not get out of bed until around 8:00am. That is quite late as normally I am out of bed closer to 6:00am. You would think being in bed for an additional 2 hours would have helped me out, but it did not. I woke up being my usual zombie self. Real sketchy on my feet, barely able to keep my eyes open, etc. But oh well, that is just par for the course. We had plans to attend a family picnic for labor day so I sacked it up and off we went. The picnic went much better than I could have expected. While I felt like my stomach was in my throat the entire time, that is normally a sign I am going to crash, I just kept moving. I played frisbee, soccer, volleyball, and football. I even managed to play a game of euchre. I had jog the entire time I played but I played none the less. In the approximate three hours we were at the picnic I managed to get 18,000 steps, not to shabby. Got home and took a nap. When I got up we ate supper and all four of us went outside and played a little four square. Then my youngest and I did our arms, followed up by me running a mile on the treadmill. I am tired but I am OK with that. I managed to make it through the majority of the day not feeling like a zombie. All was not perfect but compared to the previous couple of days it was a huge upgrade. I have said many times that I live day to day. Essentially no matter what happened the day before, tomorrow is a new day. It took me a couple days but at least for one day I started to pull out of my funk. The biggest key was I did not give up. Sure my illnesses won the battle for a couple days, they did not win war. Today, I won the battle! Tomorrow, who knows, but it is another day. Another day to do my best! Yesterday was a rough day, but I made it through it.
Last night I slept as good as I sleep. For the first half of the night I did not move an inch. I know this because when I took the second dose of my medication at 2am my arm and shoulder hurt from laying on it. Today should have been a good day. Well that was a poor assumption. Even waking up I was in pretty rough shape. Getting my cereal I walked around the house with one eye closed and the other other open just a sliver. After eating I completely zombied out. Awake but not really. On top of that pretty much everything was hurting on me. My arms were sore, shoulders, legs, and my healing ankle. I took a nap around lunch time and then the family and I went to a community event. We had to wait in a line quite a while for food which you would think was a bad thing but it was not. I simply jogged in place the entire time. The jogging was enough to get my adrenaline going so I was ok. All of my aches and pains went away and I jogged along. I ate pretty quickly as I knew sitting was going to be bad and went back to jogging. So far so good. Then we took a couple family pictures and the crash was on. Just sitting long enough to have a couple pictures snapped and I was start to tip backwards. After the pictures we took a short walk to the car and the crash continued on. I tried to use my wife's phone on the ride home but it did little to pull me out of the crash. When we got home I sat in my chair and all my aches and pains came rushing back. Plus it was everything that I could do to sort of be a zombie none the less be any kind of awake. I microwaved a little something for supper. My wife offered to make it for me but I was hoping that a little movement would help. It didn't. After eating the zombie was back. It took both of the boys and my wife close to ten minutes to get me up and moving. I always like to play outside but I was just done. I had no energy, everything hurt, doing anything was the last thing I wanted to do. Eventually they got me up and going. Playing again got my adrenaline going and I had fun, but eventually it got to dark and I had to stop. Hello zombie again. So here I sit kind of awake, kind of sleeping. Head drooping forward and sideways. Stupid narcolepsy is taking this round. Tomorrow we a family picnic for labor day. I know that I can run around like a yahoo to keep going but I will get tired eventually. Then I am screwed. Living off of adrenaline is an iffy proposition. Yes it keeps you going when you are doing it, but it fades fast and you crash faster. I truly hope tomorrow is a better I really HATE being a zombie! |