I've been out of work now for over 3 months.
In that timeframe I've done way too much thinking.
That means this is going to be heavy.
This is going to be deep rooted.
Unfiltered (mostly) ramblings.
Stable mentally, but thoughts betray those words.
...
...
...
...
Okay fine keep reading, I tried to warn you.
I'm overdue for the motivation it takes to deal with this illness.
Every day of our lives we're faced with problems. Whether it's small or big, whether it seems hopeless or whether it's cut and dry, the problems do not go away just because we don't have the motivation or energy. It gets worse sometimes if you neglect your duty to figure out the solution to life's toughest problems. I type this with 40 cm of tube (a piccline) in my arm, at 2 in the morning, after attempting to organize my brain and make sense of what I've been doing to myself all these years. I type this from another huge drastic change in my health, only noticeable when I hit the bottom. It's such a gradual decline I've been tricked into thinking it normal. In general, I see my lung function drop over time and feel hopeless. How can I fight against this uphill battle? That's the easiest metaphor that everyone can understand.
I'm overdue for some sanity.
My whole life is sometimes a cruel joke. I'm quite numb to it after all these years but it still insists on showing me exactly how uncontrollable it can be. I worked hard to put myself through college. It paid off in an internship under a good supervisor who tried to gear me towards this awesome worker/manager/superITguy. It worked, mostly. Then... I moved on soon after changes in management happened. I worked for 5 years, spending easily triple the amount of time working than taking care of my health - those precious lungs of mine. I was always active, I had low health management, and it was "fine". I was f.i.n.e. FINE is a big joke. I wasn't fine. I'm losing lung function in my later 20s much faster than I should be. Doctors tell me everytime I go there. I am now, with 5 years of experience still struggling for a job, in the most hire-able field in this decade. IT work was supposed to be stable. I need a balance of health and life. Health needs to come first. I need to focus on my health, so I can be here to yell at people in my 40s about how they abuse their lungs and it pisses me the fuck off. Wait, that's not right. I need to be here to see others succeed around me, maybe to have some kiddos looking up to me succeeding. Parents live for their kids (the good ones), what do non-parents live for? Themselves or other people? I see people around me confused, and constantly wondering when I'm going to "feel better". As if such a simple thing was achievable by a mere few days of drugs. There are no solutions to the problems, just a bunch of short term fixes. This will take time. This will take patience. This cannot drive me insane.
I'm overdue for a career change.
IT is great, it provides me with distraction, and pays me well for it. That distraction allows me to believe I live a mostly non-cf-plagued life. At least in the open, where people can see and hear - they see a motivated individual who works hard for the goals of the company. I thrive for challenges that actually have answers. In my world, that few actually see, I struggle to keep things moving. I see my health suffer and can't balance. The workforce of this country does not allow for weak people. Nobody wants to pay you to make your own hours and work your ass off, they want to pay you for 3 hours of work in a cube, and 8 hours of your life spent there. They are not willing to bend. Who will break first? It won't be them. The job market is so saturated that I am literally just a name on a paper, on a pile of papers, in an office full of stacks of papers. I need an exit strategy before I work myself into a more-early death..
I'm overdue for the courage to fight, as hard as I can, to do something meaningful in life
I'm overdue for a break from this madness. I'm sick of being knocked back, having to start over.
I'm long overdue for some sort of hope, some positive emotions from my brain - in whatever form.
I'm overdue for being able to breathe without wheezing. I'm overdue for a real pair of lungs.
...
...
...
It gets better.
I'm overdue for optimism
The rest of this nonsense life of mine is a giant puzzle without one hand, and with a 3 dimensional table with constant-changing-gravity that forces me to pick up the pieces more than actually put the thing together..
Yoga w/ pranayama breathing I think is key to some sort of mental/physical exercise. And being able to monitor my health, would help some I think.. Constant, friendly, positive reminders. Focus. Less distractions and more ability to focus on the things that matter.
I am sick of people telling me what to do, I want them to show me. Show me struggle, show me your pain, and show me how you deal with it. Give me motivation. I want to strive to be better, show me how. Stop telling me WHAT to do, and just show me HOW. Empty suggestions are not helpful. I've dealt with this negativity so long, one little suggestion isn't going to light up an entire castle of darkness. It requires much more light. If you want to light up the darkest dungeon, you need much more than one bright lightbulb of an idea...
I need to figure out a long-lasting self-producing-promoting career. I think web development is key. It's easy, I have a background, I can begin almost immediately, and I can grow. I need to drop the other nine billion things and focus. It's tough, obviously. I have a sense of want to thrive as much as I can, and I know my work will reflect it however I need that opportunity to do so. I need to breathe, easier. I am sick of carrying the weight on my shoulders. There's nothing I can do with all this pressure but collapse or succeed. I've always told myself succeeding is the only option, and I don't plan to change that now.
I need to make a difference to make this life worth a damn. I won't struggle to breathe my entire life only to come up short on making a difference. I won't go through this struggle to not achieve anything, to not help anyone else through it. I will do something. I just don't know what that is yet.
Thursday, November 12, 2015
Friday, January 9, 2015
Incoming Rant - Following Doctors Recommendations
Incase you have not figured out yet, I have Cystic fibrosis. This rant is pertaining to that.
I need to rant about this, perhaps you will agree or disagree, either way I recommend you follow doctors recommendations, as they are your doctors. Do not do so blindly, because at the end this is your body and you need to be realistic with what you are doing to help better yourself.
Recently I filled out a form where the doctor got to provide input on how medication compliant I am (among other things). 10 was the best, and I scored a 2/10.
Two out of ten. So basically there are worse people that are compliant than I am, but not by much. Let's review how I feel about this. Firstly, I think it's a stupid scale and it should have doctor feedback as well as patient feedback for this, as there may be a valid reason for not listening to what the doctor says blindly.
So here's my reasoning.
I have two gene mutations which are rare. Both mutations put me into a 10% or less bracket of symptoms and life than anyone else with CF. I am more fortunate than most, I can work a fulltime job, I can do things as if I'm basically healthy and "normal". (I don't use the word normal often, but i think it fits here). So given that I've done a small subset of research on my illness, and the 2 mutations that I have, I consider myself a little educated on the subject. Just slightly, given the research I have seen and what information has been presented to me.
I have 2 genes that put me into a weird bracket of CF. There's no real treatment *yet* for per-gene therapy. Kalydeco is the first that has come to the market to offer a solution to specific genes. Hopefully it's the first of many. Current meds for "CF" as bundled as we are, are basically put onto the market after given studies to various gene types and up till now have basically been for preventative maintenance. There's no promise that taking these medication regime will help or delay the failure of my lungs or the decline of my lung function, but since research has proved that they do something, they have been released onto the market about 5-10 years ago roughly. I could look up exactly but for this rant, I'm not sure anyone is going to be fact checking here.
Every time a doctor recommends something or a nurse harasses me about the doctors recommendation I just want to scream. Has this been proven for my genetic mutation? No probably not since my genes are rare. They have been proven to help on wide range of mutations though, so it should help... That's basically the answer I receive. There's basically no gene by gene researching going on. There are classes of genes which I have recently learned about, which potentially could help this medication debacle and problematic "medication taker" that I am, I think it would be good to classify things as such.
Am I seriously the only person who refuses to do anything blindly? Firstly, I respect professionals opinions, and I am always nice to everyone I speak with or see. I can appreciate the advice of someone who is dealing with people with similar illness. I can always appreciate the quality of care I receive as well. However I am not just going to put anything in my body without researching first, and I'm not going to just "listen" to anything you say. Statistically it's very unlikely that there are many people with either of my genes. It's probably even more rare that there's someone with both genes that I have. So you expect me to basically listen blindly to everything you are recommending, when 90% of the people you recommend things to have the same genes, and I do not.
Am I in the wrong here? Nurses seem to think it's okay to basically talk down to me in regards to my "treatments" when I tell them how few medications and treatments that I am on. I call in because I have caught a cold, they ask me what I'm doing, I tell them, its basically like I'm shooting myself in the foot. They tell me I need to be doing x,y,z. I don't even argue anymore I just accept that they have this set of bullshit for every CF person and I have to pick and choose what I think will work best for me.
I tried. I've tried so many times to work into my life this "regimen". This is what my day would look like if i were to do everything that was told to me.
7am: wake up.
705: take inhaler and wait 15mins
720: take hypertonic saline (20min treatment)
740: wait 15 minutes after HTS to do breathing exercises
755: Either use the vest for 30minutes, or breathe into this device that basically helps break down the mucus for about 15 minutes
810: Inhale tobe - 10~ish minutes
820: After airway clearance ^ , do another breathing treatment of Pulmozyme (10~ minutes)
830: Finally start getting ready for work?
And then basically the same thing in the evening. So approx. 3 hours of my life, everyday, to treatments. I love when they tell me to do something THREE Times a day, so somehow I have to fit that into my schedule. I once had a nurse ask me if I could do a neb while driving in the car.
Don't enough people do shit while driving that they shouldn't? Is my car self driving? What about the shifting because I drive a manual? When do I have time for breakfast exactly? (not that I'm much of a breakfast person anyways)
So the reality of this rant is that, no I'm not spending 3 hours of my life everyday to do things that COULD potentially help my condition. I have absolutely no problem doing something that is relevant to my gene-type. But if you're really going to just tell me to do something (and harass me when I don't in the form of talking down to me) without providing accurate data to me, it's going to get overlooked and not going to happen. Why? Because it's simple. Less than 10% of people have one of my genes. I sincerely doubt that makes up much more than a few people per large city, since the CF centers are in the large cities i'll use that as my benchmark here. So less than a few people, and somehow we're all supposed to be good little people with CF who follow every order the doctor gives us.
Present me with data pertaining to my genes, and I will happily oblige. Till then I'll put up with the downtalking on the phone, and the 2 out of 10 rating they provide me with. Why do I even bother goign to the doctors exactly? Oh right, because maybe one day they can prescribe me a medication that actually helps the problem with my illness and not the symptoms. As a society we take too much and learn too little. I'm not going to feed into that or get anymore into that.
That is all, /endrant.
I need to rant about this, perhaps you will agree or disagree, either way I recommend you follow doctors recommendations, as they are your doctors. Do not do so blindly, because at the end this is your body and you need to be realistic with what you are doing to help better yourself.
Recently I filled out a form where the doctor got to provide input on how medication compliant I am (among other things). 10 was the best, and I scored a 2/10.
Two out of ten. So basically there are worse people that are compliant than I am, but not by much. Let's review how I feel about this. Firstly, I think it's a stupid scale and it should have doctor feedback as well as patient feedback for this, as there may be a valid reason for not listening to what the doctor says blindly.
So here's my reasoning.
I have two gene mutations which are rare. Both mutations put me into a 10% or less bracket of symptoms and life than anyone else with CF. I am more fortunate than most, I can work a fulltime job, I can do things as if I'm basically healthy and "normal". (I don't use the word normal often, but i think it fits here). So given that I've done a small subset of research on my illness, and the 2 mutations that I have, I consider myself a little educated on the subject. Just slightly, given the research I have seen and what information has been presented to me.
I have 2 genes that put me into a weird bracket of CF. There's no real treatment *yet* for per-gene therapy. Kalydeco is the first that has come to the market to offer a solution to specific genes. Hopefully it's the first of many. Current meds for "CF" as bundled as we are, are basically put onto the market after given studies to various gene types and up till now have basically been for preventative maintenance. There's no promise that taking these medication regime will help or delay the failure of my lungs or the decline of my lung function, but since research has proved that they do something, they have been released onto the market about 5-10 years ago roughly. I could look up exactly but for this rant, I'm not sure anyone is going to be fact checking here.
Every time a doctor recommends something or a nurse harasses me about the doctors recommendation I just want to scream. Has this been proven for my genetic mutation? No probably not since my genes are rare. They have been proven to help on wide range of mutations though, so it should help... That's basically the answer I receive. There's basically no gene by gene researching going on. There are classes of genes which I have recently learned about, which potentially could help this medication debacle and problematic "medication taker" that I am, I think it would be good to classify things as such.
Am I seriously the only person who refuses to do anything blindly? Firstly, I respect professionals opinions, and I am always nice to everyone I speak with or see. I can appreciate the advice of someone who is dealing with people with similar illness. I can always appreciate the quality of care I receive as well. However I am not just going to put anything in my body without researching first, and I'm not going to just "listen" to anything you say. Statistically it's very unlikely that there are many people with either of my genes. It's probably even more rare that there's someone with both genes that I have. So you expect me to basically listen blindly to everything you are recommending, when 90% of the people you recommend things to have the same genes, and I do not.
Am I in the wrong here? Nurses seem to think it's okay to basically talk down to me in regards to my "treatments" when I tell them how few medications and treatments that I am on. I call in because I have caught a cold, they ask me what I'm doing, I tell them, its basically like I'm shooting myself in the foot. They tell me I need to be doing x,y,z. I don't even argue anymore I just accept that they have this set of bullshit for every CF person and I have to pick and choose what I think will work best for me.
I tried. I've tried so many times to work into my life this "regimen". This is what my day would look like if i were to do everything that was told to me.
7am: wake up.
705: take inhaler and wait 15mins
720: take hypertonic saline (20min treatment)
740: wait 15 minutes after HTS to do breathing exercises
755: Either use the vest for 30minutes, or breathe into this device that basically helps break down the mucus for about 15 minutes
810: Inhale tobe - 10~ish minutes
820: After airway clearance ^ , do another breathing treatment of Pulmozyme (10~ minutes)
830: Finally start getting ready for work?
And then basically the same thing in the evening. So approx. 3 hours of my life, everyday, to treatments. I love when they tell me to do something THREE Times a day, so somehow I have to fit that into my schedule. I once had a nurse ask me if I could do a neb while driving in the car.
Don't enough people do shit while driving that they shouldn't? Is my car self driving? What about the shifting because I drive a manual? When do I have time for breakfast exactly? (not that I'm much of a breakfast person anyways)
So the reality of this rant is that, no I'm not spending 3 hours of my life everyday to do things that COULD potentially help my condition. I have absolutely no problem doing something that is relevant to my gene-type. But if you're really going to just tell me to do something (and harass me when I don't in the form of talking down to me) without providing accurate data to me, it's going to get overlooked and not going to happen. Why? Because it's simple. Less than 10% of people have one of my genes. I sincerely doubt that makes up much more than a few people per large city, since the CF centers are in the large cities i'll use that as my benchmark here. So less than a few people, and somehow we're all supposed to be good little people with CF who follow every order the doctor gives us.
Present me with data pertaining to my genes, and I will happily oblige. Till then I'll put up with the downtalking on the phone, and the 2 out of 10 rating they provide me with. Why do I even bother goign to the doctors exactly? Oh right, because maybe one day they can prescribe me a medication that actually helps the problem with my illness and not the symptoms. As a society we take too much and learn too little. I'm not going to feed into that or get anymore into that.
That is all, /endrant.
Monday, December 1, 2014
Career Success
So I've spent quite a bit of time trying to fathom and comprehend how someone has a successful career. It seems that older people in their 30s/40s who work really hard end up having a successful life. Except they work themselves to the bone and do barely else. I can say that there are some people who manage to retire, and it's nice to know there MAY be light at the end of the tunnel somewhere. I do not see the same future for myself, probably why it's so difficult to think about it. At some point in 20ish years, I'll probably be completely and utterly sick, and unable to work. I'm not expecting to have a fulltime job at that point, much less "retire" from anywhere. I'm suspecting I'll have whatever I've managed to build for myself in my time working, and hopefully have enough saved away that I can live off of with disability from the state as well. But then there's always hope for some sort of pharmaceutical miracle, right? I suppose there's much hope after the vertex trials and the billions of dollars that the CFF raised. We'll see what happens in the next few years, hopefully something to give me peace at mind.
Okay so, work really hard, all the time, sacrifice a lot of things, and be successful. But what is success really? Is it measured by how much debt you're not in, or how many vacations you can afford to go on? To me it's a matter of perspective, like much else in the world, it seems to lose focus depending on who you talk to. To me it means doing something from start to finish, in it's entirety. It means picking up the pieces of a puzzle and finishing it, even if you didn't start it. It means being able to survive and live in this world and society, as unfortunate as that is, that's what I attribute career success to be.
So how do you become successful? I'm still trying to understand, do you try to get to the top of a specific company? Do you keep bouncing around from position to position trying to find the best possibly salary and bonus structure with a stable company? Do you just work at the same place for a dozen+ years hoping that they will remember you when retirement comes? What's the answer? I'm not exactly certain, as none of the companies I've ever worked for have any retired people in it. They aren't large scale companies in the slightest. They want to use you for work, and then throw you away and try their chances with the next person. I've never been in a financial situation where I can just try to do things my way on my own, and I'm not certain I ever will be.
My biggest part to comprehend is working a 40 hour work week, nonstop. Why do we live in a country that works everyone to death? That cares so little about each other and their physical/mental health? Why do we thrive on this kind of society? What does it take to change? I wish I knew these answers, I think I'd be better off. But for now I have to play the game - the game where I use every bit of energy to get somewhere quickly in life, in hopes that i can sustain my health before it collapses along with my sanity, and make a mark on this world. All the while pretending I am just like the rest of you... All the while wondering how long I can keep this up for. Only time will tell.
Okay so, work really hard, all the time, sacrifice a lot of things, and be successful. But what is success really? Is it measured by how much debt you're not in, or how many vacations you can afford to go on? To me it's a matter of perspective, like much else in the world, it seems to lose focus depending on who you talk to. To me it means doing something from start to finish, in it's entirety. It means picking up the pieces of a puzzle and finishing it, even if you didn't start it. It means being able to survive and live in this world and society, as unfortunate as that is, that's what I attribute career success to be.
So how do you become successful? I'm still trying to understand, do you try to get to the top of a specific company? Do you keep bouncing around from position to position trying to find the best possibly salary and bonus structure with a stable company? Do you just work at the same place for a dozen+ years hoping that they will remember you when retirement comes? What's the answer? I'm not exactly certain, as none of the companies I've ever worked for have any retired people in it. They aren't large scale companies in the slightest. They want to use you for work, and then throw you away and try their chances with the next person. I've never been in a financial situation where I can just try to do things my way on my own, and I'm not certain I ever will be.
My biggest part to comprehend is working a 40 hour work week, nonstop. Why do we live in a country that works everyone to death? That cares so little about each other and their physical/mental health? Why do we thrive on this kind of society? What does it take to change? I wish I knew these answers, I think I'd be better off. But for now I have to play the game - the game where I use every bit of energy to get somewhere quickly in life, in hopes that i can sustain my health before it collapses along with my sanity, and make a mark on this world. All the while pretending I am just like the rest of you... All the while wondering how long I can keep this up for. Only time will tell.
Tuesday, June 17, 2014
Evil
I cannot fathom why there are people in this world who are out to hurt others. I cannot wrap my mind or attempt to understand what gives the person the gall, the urge, to hurt someone. I have seen so much unneeded pain in my lifetime, both physical and mental that was beyond avoidable.
People in general are so lost.
What makes a person want to hurt someone? Do they feel like it makes their blood pump faster knowing the other person is in pain and they are not? Are they so caught up in their own life that they cannot even fathom that they are causing other people pain?
I guess it's a good thing I cannot relate, it probably speaks volumes about my own personality. I'm attempting to vent here, based on a bunch of recent events against some female friends of mine, it's becoming increasingly difficult to hold back my anger and not just destroy everything. I'm a very calculated person, it would be in everyone's best interest not to betray me. Even then, I've been betrayed many times in the past, and I have done nothing to seek revenge. I have eventually let go of the pain, and the anger that was inside of me, and forgiven the other person(s). Being the opposite of hot-headed allows me to think through things that people would normally just jump and react to. This is definitely one of my strong suits. It's easier for me to forgive and never forget about things directed at me, because I know I'm the better person. It's harder for me to accept that people I know, gentle, kind, genuine people, are being taken advantage of, or are being hurt intentionally by others. It's even more difficult to accept that there's nothing I can do about it.
What does anger prove? It proves that I'm able to feel a strong set of emotions, that make my fists clench and my mind race, it proves that I'm able to feel the Yang to my peaceful calm Yin. It helps me understand myself better each time I get angry, wondering what it was that allowed me to get this way. I'm not perfect, and I most certainly have had anger problems most of my early life, but it seems now it takes a whole lot to make me angry. I think it's because I realize that this lie is short, and the stress that I'm putting on my body with anger and pain, is only slowly killing me. There are certain kinds of anger, that I use for energy and I hang onto. That good anger, that motivation to succeed and not give up, that's a kind I'll live with. It's not all bad, but most of it is...
So why does evil exist? I often find myself saying that you cannot have good without the bad, you cannot have yin without the yang. It would be foolish of me not to accept my own advice, that I've given to countless friends on countless occasions. So here's me trying to accept that evil exists only so we can appreciate the good in the world. Yup, I tried, I refuse to accept it. I think we can learn from the few evil people and allow history to tell us the rest. I'm so sick of feeling anger and hatred towards people I don't even know. It's easy to do though, especially when the people you don't know are hurting the people you know and care about. It's easy to misplace feelings and allow yourself to be consumed with the negativity that anger brings. It's difficult though, to accept myself angry. I don't want to be that kind of person, and I don't want to embrace those feelings. But I can't help but want very much for karma to do it's job and take people who don't deserve this air they are breathing, and take it away from them.
I have many reasons in this world to hate, or to feel angry. I choose not to because I don't like what it does to me. I choose not to be angry. So why can't others choose this way too? What's the motivation to hurt others? You're ruining good people all for the sole purpose of achieving your own goals. You're no better than the rest of the scum on this planet, trying to take advantage of the weaker person for your own gains. You deserve to be strung up, and pulled from 4 different directions by 4 horses, while being spit on by everyone in the city. If I were to ever change my passive ways, and subject myself to being an aggressive person, I would surely not be bored or without purpose..
But I digress. Life is too short for the what-if's and the misery. Life is too short to allow one bad seed to ruin an entire orchard of hope and love. I'm not a bundle of kittens in terms of personality, I definitely get pissed off. I just try to be conscious of my attitude and how my actions can affect others. This world has enough hate, greed, and misery in it, I do my best not to add to it. You should too.
So my ending thoughts are this: Don't be lost. Don't be so caught up in your "life-situation" that you're refusing to see how your actions are affecting others. There are a lot of people out there who will help shape this world for the better, and everytime they get shit on and they get betrayed, it's one step closer from this world not having anyone left to give a fuck about it and the people on it. What happens when nobody gives a shit? What happens when there's not a soul left who has peace enough to effect others positively? How long do you think we'll last as a civilization? As a member of the human race, this thought makes me realize how easily we could become extinct.
People in general are so lost.
What makes a person want to hurt someone? Do they feel like it makes their blood pump faster knowing the other person is in pain and they are not? Are they so caught up in their own life that they cannot even fathom that they are causing other people pain?
I guess it's a good thing I cannot relate, it probably speaks volumes about my own personality. I'm attempting to vent here, based on a bunch of recent events against some female friends of mine, it's becoming increasingly difficult to hold back my anger and not just destroy everything. I'm a very calculated person, it would be in everyone's best interest not to betray me. Even then, I've been betrayed many times in the past, and I have done nothing to seek revenge. I have eventually let go of the pain, and the anger that was inside of me, and forgiven the other person(s). Being the opposite of hot-headed allows me to think through things that people would normally just jump and react to. This is definitely one of my strong suits. It's easier for me to forgive and never forget about things directed at me, because I know I'm the better person. It's harder for me to accept that people I know, gentle, kind, genuine people, are being taken advantage of, or are being hurt intentionally by others. It's even more difficult to accept that there's nothing I can do about it.
What does anger prove? It proves that I'm able to feel a strong set of emotions, that make my fists clench and my mind race, it proves that I'm able to feel the Yang to my peaceful calm Yin. It helps me understand myself better each time I get angry, wondering what it was that allowed me to get this way. I'm not perfect, and I most certainly have had anger problems most of my early life, but it seems now it takes a whole lot to make me angry. I think it's because I realize that this lie is short, and the stress that I'm putting on my body with anger and pain, is only slowly killing me. There are certain kinds of anger, that I use for energy and I hang onto. That good anger, that motivation to succeed and not give up, that's a kind I'll live with. It's not all bad, but most of it is...
So why does evil exist? I often find myself saying that you cannot have good without the bad, you cannot have yin without the yang. It would be foolish of me not to accept my own advice, that I've given to countless friends on countless occasions. So here's me trying to accept that evil exists only so we can appreciate the good in the world. Yup, I tried, I refuse to accept it. I think we can learn from the few evil people and allow history to tell us the rest. I'm so sick of feeling anger and hatred towards people I don't even know. It's easy to do though, especially when the people you don't know are hurting the people you know and care about. It's easy to misplace feelings and allow yourself to be consumed with the negativity that anger brings. It's difficult though, to accept myself angry. I don't want to be that kind of person, and I don't want to embrace those feelings. But I can't help but want very much for karma to do it's job and take people who don't deserve this air they are breathing, and take it away from them.
I have many reasons in this world to hate, or to feel angry. I choose not to because I don't like what it does to me. I choose not to be angry. So why can't others choose this way too? What's the motivation to hurt others? You're ruining good people all for the sole purpose of achieving your own goals. You're no better than the rest of the scum on this planet, trying to take advantage of the weaker person for your own gains. You deserve to be strung up, and pulled from 4 different directions by 4 horses, while being spit on by everyone in the city. If I were to ever change my passive ways, and subject myself to being an aggressive person, I would surely not be bored or without purpose..
But I digress. Life is too short for the what-if's and the misery. Life is too short to allow one bad seed to ruin an entire orchard of hope and love. I'm not a bundle of kittens in terms of personality, I definitely get pissed off. I just try to be conscious of my attitude and how my actions can affect others. This world has enough hate, greed, and misery in it, I do my best not to add to it. You should too.
So my ending thoughts are this: Don't be lost. Don't be so caught up in your "life-situation" that you're refusing to see how your actions are affecting others. There are a lot of people out there who will help shape this world for the better, and everytime they get shit on and they get betrayed, it's one step closer from this world not having anyone left to give a fuck about it and the people on it. What happens when nobody gives a shit? What happens when there's not a soul left who has peace enough to effect others positively? How long do you think we'll last as a civilization? As a member of the human race, this thought makes me realize how easily we could become extinct.
Saturday, April 19, 2014
Purpose (clearly it's 42)
(Holy burnt bacon Batman! A lot of words incoming!)
What do you feel the purpose of living is? I think all of us have spent time deciding what we want to do with our lives, or perhaps to find fulfillment and purpose... But how do we know the things we are doing and the path we are traveling is the right one? Is there a right one? (I'm a left kind of a guy..) Or is it just better to decide to go down the wrong street than to hesitate? Personally I don't mind circling the block a few times to find where I'm supposed to go as opposed to being in that awkward state of mind where you aren't sure what you're doing and there's someone behind you creeping up on you, hopefully not texting and doesn't rear-end you...
Where do you find purpose, if you can't find it within yourself? Do you reach out to others indirectly for it? I think it's common, that you find people that you admire for reasons you cannot explain, and you seek their purpose, and then manipulate and transform the purpose to best fit what you're searching for, and what kind of fulfillment you require during this process of acquiring purpose. But the problem with this logic is that you never know if that person, that role model - is actually genuine; and therefore you base your own logic and reasoning off the idea of someone's genuine nature, and genuine characteristics (at least in my own experience).
What then if you get let down? Does your life fall apart?
Probably not, you probably have good ideals, or good morals set for yourself so therefore you have some stability in life. I have this thought in my mind: if I build a good foundation, there's no ditch I can fall into anymore. I find this to be true with a lot of things in my life - relationships, friendships, my career.. If I take the time to build foundation, even if I fall (get out of a relationship, lose a friendship, lose a job) - I know I'm setting myself up mentally, and in my career with a skillset to handle the sorts of falling that could occur. It's just precaution, but it's worth doing in most cases. And in my career, it's just helping my build a better career, so it's a win-win there..
If you find your life falling apart, I urge you to build foundation. Start with the basics: means to survive, taking care of the important things, determine what you need to do for yourself and your state of mind, and start building on that - find a good group of people that have common interests who bring the best parts of your personality out - the ones you can tell anything to, the ones you can goof off with, the ones who aren't afraid to tell you when you're stepping out line - and be humble enough to appreciate their words and their friendship to know when you need to re-evaluate!
I rant a good bit, and go back and forth on issues, but it's the meat (to my vegan friends: tofu) and potatoes that I want to discuss here. The purpose of the plate of food, the purpose of waking up on time for things, the purpose of life - the universe, and everything in it. (Besides the obvious answer of 42..)
I look at my life, and the hardships I've endured as some sort of preface or some sort of start of an epic journey in which I'm meant to do something amazing. I've felt my entire life that I didn't quite understand why - I have to do something meaningful. I can't live this entire life struggling and not have anything to show for it. I can't live a life without purpose, I won't allow myself to do that. I know I can't be the only one. It could be my imagination that refuses to believe that I'm some normal guy, meant to just live a dull life and die, but I can tell you regardless of the reason, I will make a difference in this world. So this brings me back to the plate of food in front of us.
The meat represents our life goals. We want to have kids, we want to buy a house (or at least live in one), we want to get married. These goals, are usually tailored towards our own individual outlook on life. For example, adoption vs. fostering vs. having kids the ol' fashion way. It's funny though, just like our meat we have our own idea of what we want - what we like - how we like our food marinated, cooked, etc - and nobody can change that. Sometimes we don't always get it though, and we manage just fine. It's because we have learned over the years to have expectations - hope for the best, expect the worse- and react accordingly. We have learned to adapt. Arguably one of my best qualities that I don't feel arrogant admitting, is my ability to adapt. I wouldn't call me a chameleon or anything close to having the advantageous ability to have my body react to the environment around me, however mentally, I'm fully capable of thinking through any problem that comes my way. I can deal with meat that's medium, I can deal with meat that's fully cooked, I can deal with no meat at all (yay tofu friends!).
The potatoes refer to our ideals, and our maturity. At times we want our potatoes fried, sometimes we want them baked, sometimes we want them plain, sometimes we want them with bacon, sometimes with want them with sour cream. Sometimes want them at breakfast, and sometimes we want.. you get the point. At times we feel like being silly, at times we feel like we need to act a certain way based on society, but our core personality comes from however we're feeling and what emotions we decide to show at the current time.
So if we're talking a plate of food here, we're all over the place. Do we serve meat, how cooked do we want it, etc etc. What about our potatoes, do we even want potatoes tonight, what about pasta instead? Are we feeling upto having sour cream again? It's not even sour.. If we're talking life goals and morals, we should have that ironed out right? At 26 years old, I'm still trying to piece this together. I feel like people in their 30s (my siblings are a good example) have their lives together. Why can't I have mine together at 26? They have kids, they have a purpose, they have meaning. If our plates keep changing, our meals are always different, how can we have a grasp of what our goals, and ideals are? We can't forget our veggies either, which of course I'll save for another conversation - love me those veggies.
Why do we wake up every morning when an alarm goes off? Why do we subject ourselves to a nine to five lifestyle, or a curfew, or going to sleep at a certain time so we can function at a certain hour in the morning. Our bodies are just being used and abused, and we do it all the time hoping we bounce back. More times than not, we bounce back so we find it acceptable to do this. I think the reason we wake up is because we find our present moment more important than the dreams we were in. Our day-dreams become our realities, our night-dreams.... have many meanings. I don't often remember mine, so I can't speak to this much. I think purpose is the reason we wake up, we have things to do - and the things build on other things - which inevitably work towards our goals. So we wake up for purpose, got it! What if our goals aren't in sight, or are skewed, this could explain why I don't like getting out of bed recently.
I look at my life and question whether I'm putting forth effort correctly to go after my goals, or should be putting forth effort in other places. My mind runs, it goes a million miles a minute. The motorcycle calms it down, but also speeds it up. Music calms it down, but there never seems to be a good source for music based on whatever mood I'm in. There are other things that calm me, or that ease the mind, but it's so few and far between. There isn't enough steak sauce to go with the steak. There isn't enough sour cream for the potatoes. I'm just not sure what the next step is, or if I'm even focusing on the right things. I'd like to believe I am, but how did I end up jobless, and in a certain state of disarray? Is the reflection really needed for my next step? Am I really impacting enough people, is there more I could be doing? Why don't I have the motivation I should? Is negativity getting ahold of me? Too much time without a focus which has previously been my career, and that might be getting to me.
Clearly my focus should be health - getting a handle on the CF and building a foundation that I can't fall from, but it's been difficult to grasp - difficult to get ahead of; and then finding another job to fulfill me and work towards getting out of debt to have more time to spend with the people I love and care about; and then perhaps change the world for the better.
Without focus, we lose sight of what's important and we get lost.
I'm feeling this moment of lost now, even with the momentary boost of optimism, I don't know if building my career, and spending the time I'm spending is really helping my purpose of changing this planet. I need to find a way to mesh these two goals together without losing sight of my health. I can figure out many problems, my health is not one of them that I have any sort of groundbreaking movement on- but working on it at least. Fulfillment is important, it helps me keep moving when I don't know how, and I get that out of my career, so I've got that going for me at least.
I can't change this planet alone, I need others who have the drive to help, to do so! There's no reason we need to subject ourselves to a linear way of thinking. There's no reason we need to be a slave to routine and refuse to step outside of our bubble. We need to think critically, we need to solve problems, and we need to be happy! There is so much in this world to be happy, let it fill you up and don't let go of it. Only then will we advance human beings, be unconditionally loved, and impact things positively. It starts with you and I. Every drop of poison to our minds from every word of negativity, every bad habit - changes our reality - our plate of food. It changes how we think, what our current mood is, and what our end goal is. Remember that in every situation, good or bad, you must accept and not let it negativity impact you and your future!
If you want to know how this relates to food - try being angry while eating, or making pasta and expecting potatoes instead. It just doesn't work out the way you want it to, but you eat it anyways. Your life doesn't have to be this way. You don't have to eat the plate of food (your goals), you can change them!
So if you asked me what my purpose in this life is, I'd simply smile, look you in the eyes with my brown eyes, and tell you: This life of mine is exactly what I've made it out to be, and it will continue to unfold and be the book that I choose to write. I will encourage others to make positive choices in their lives in hopes they will make better people out of themselves and in turn hopefully change the planet one friendship at a time. My overall purpose is to have a positive impact on this planet, to the people on it, and to live a fulfilling life for myself by whatever means possible. Regardless of what the plate of food is, or how we eat it, we must have a solid agreement with ourselves on what we want to accomplish in this world, and we must let nothing stand in our way.
As always, thanks for reading - open to suggestions and feedback.
What do you feel the purpose of living is? I think all of us have spent time deciding what we want to do with our lives, or perhaps to find fulfillment and purpose... But how do we know the things we are doing and the path we are traveling is the right one? Is there a right one? (I'm a left kind of a guy..) Or is it just better to decide to go down the wrong street than to hesitate? Personally I don't mind circling the block a few times to find where I'm supposed to go as opposed to being in that awkward state of mind where you aren't sure what you're doing and there's someone behind you creeping up on you, hopefully not texting and doesn't rear-end you...
Where do you find purpose, if you can't find it within yourself? Do you reach out to others indirectly for it? I think it's common, that you find people that you admire for reasons you cannot explain, and you seek their purpose, and then manipulate and transform the purpose to best fit what you're searching for, and what kind of fulfillment you require during this process of acquiring purpose. But the problem with this logic is that you never know if that person, that role model - is actually genuine; and therefore you base your own logic and reasoning off the idea of someone's genuine nature, and genuine characteristics (at least in my own experience).
What then if you get let down? Does your life fall apart?
Probably not, you probably have good ideals, or good morals set for yourself so therefore you have some stability in life. I have this thought in my mind: if I build a good foundation, there's no ditch I can fall into anymore. I find this to be true with a lot of things in my life - relationships, friendships, my career.. If I take the time to build foundation, even if I fall (get out of a relationship, lose a friendship, lose a job) - I know I'm setting myself up mentally, and in my career with a skillset to handle the sorts of falling that could occur. It's just precaution, but it's worth doing in most cases. And in my career, it's just helping my build a better career, so it's a win-win there..
If you find your life falling apart, I urge you to build foundation. Start with the basics: means to survive, taking care of the important things, determine what you need to do for yourself and your state of mind, and start building on that - find a good group of people that have common interests who bring the best parts of your personality out - the ones you can tell anything to, the ones you can goof off with, the ones who aren't afraid to tell you when you're stepping out line - and be humble enough to appreciate their words and their friendship to know when you need to re-evaluate!
I rant a good bit, and go back and forth on issues, but it's the meat (to my vegan friends: tofu) and potatoes that I want to discuss here. The purpose of the plate of food, the purpose of waking up on time for things, the purpose of life - the universe, and everything in it. (Besides the obvious answer of 42..)
I look at my life, and the hardships I've endured as some sort of preface or some sort of start of an epic journey in which I'm meant to do something amazing. I've felt my entire life that I didn't quite understand why - I have to do something meaningful. I can't live this entire life struggling and not have anything to show for it. I can't live a life without purpose, I won't allow myself to do that. I know I can't be the only one. It could be my imagination that refuses to believe that I'm some normal guy, meant to just live a dull life and die, but I can tell you regardless of the reason, I will make a difference in this world. So this brings me back to the plate of food in front of us.
The meat represents our life goals. We want to have kids, we want to buy a house (or at least live in one), we want to get married. These goals, are usually tailored towards our own individual outlook on life. For example, adoption vs. fostering vs. having kids the ol' fashion way. It's funny though, just like our meat we have our own idea of what we want - what we like - how we like our food marinated, cooked, etc - and nobody can change that. Sometimes we don't always get it though, and we manage just fine. It's because we have learned over the years to have expectations - hope for the best, expect the worse- and react accordingly. We have learned to adapt. Arguably one of my best qualities that I don't feel arrogant admitting, is my ability to adapt. I wouldn't call me a chameleon or anything close to having the advantageous ability to have my body react to the environment around me, however mentally, I'm fully capable of thinking through any problem that comes my way. I can deal with meat that's medium, I can deal with meat that's fully cooked, I can deal with no meat at all (yay tofu friends!).
The potatoes refer to our ideals, and our maturity. At times we want our potatoes fried, sometimes we want them baked, sometimes we want them plain, sometimes we want them with bacon, sometimes with want them with sour cream. Sometimes want them at breakfast, and sometimes we want.. you get the point. At times we feel like being silly, at times we feel like we need to act a certain way based on society, but our core personality comes from however we're feeling and what emotions we decide to show at the current time.
So if we're talking a plate of food here, we're all over the place. Do we serve meat, how cooked do we want it, etc etc. What about our potatoes, do we even want potatoes tonight, what about pasta instead? Are we feeling upto having sour cream again? It's not even sour.. If we're talking life goals and morals, we should have that ironed out right? At 26 years old, I'm still trying to piece this together. I feel like people in their 30s (my siblings are a good example) have their lives together. Why can't I have mine together at 26? They have kids, they have a purpose, they have meaning. If our plates keep changing, our meals are always different, how can we have a grasp of what our goals, and ideals are? We can't forget our veggies either, which of course I'll save for another conversation - love me those veggies.
Why do we wake up every morning when an alarm goes off? Why do we subject ourselves to a nine to five lifestyle, or a curfew, or going to sleep at a certain time so we can function at a certain hour in the morning. Our bodies are just being used and abused, and we do it all the time hoping we bounce back. More times than not, we bounce back so we find it acceptable to do this. I think the reason we wake up is because we find our present moment more important than the dreams we were in. Our day-dreams become our realities, our night-dreams.... have many meanings. I don't often remember mine, so I can't speak to this much. I think purpose is the reason we wake up, we have things to do - and the things build on other things - which inevitably work towards our goals. So we wake up for purpose, got it! What if our goals aren't in sight, or are skewed, this could explain why I don't like getting out of bed recently.
I look at my life and question whether I'm putting forth effort correctly to go after my goals, or should be putting forth effort in other places. My mind runs, it goes a million miles a minute. The motorcycle calms it down, but also speeds it up. Music calms it down, but there never seems to be a good source for music based on whatever mood I'm in. There are other things that calm me, or that ease the mind, but it's so few and far between. There isn't enough steak sauce to go with the steak. There isn't enough sour cream for the potatoes. I'm just not sure what the next step is, or if I'm even focusing on the right things. I'd like to believe I am, but how did I end up jobless, and in a certain state of disarray? Is the reflection really needed for my next step? Am I really impacting enough people, is there more I could be doing? Why don't I have the motivation I should? Is negativity getting ahold of me? Too much time without a focus which has previously been my career, and that might be getting to me.
Clearly my focus should be health - getting a handle on the CF and building a foundation that I can't fall from, but it's been difficult to grasp - difficult to get ahead of; and then finding another job to fulfill me and work towards getting out of debt to have more time to spend with the people I love and care about; and then perhaps change the world for the better.
Without focus, we lose sight of what's important and we get lost.
I'm feeling this moment of lost now, even with the momentary boost of optimism, I don't know if building my career, and spending the time I'm spending is really helping my purpose of changing this planet. I need to find a way to mesh these two goals together without losing sight of my health. I can figure out many problems, my health is not one of them that I have any sort of groundbreaking movement on- but working on it at least. Fulfillment is important, it helps me keep moving when I don't know how, and I get that out of my career, so I've got that going for me at least.
I can't change this planet alone, I need others who have the drive to help, to do so! There's no reason we need to subject ourselves to a linear way of thinking. There's no reason we need to be a slave to routine and refuse to step outside of our bubble. We need to think critically, we need to solve problems, and we need to be happy! There is so much in this world to be happy, let it fill you up and don't let go of it. Only then will we advance human beings, be unconditionally loved, and impact things positively. It starts with you and I. Every drop of poison to our minds from every word of negativity, every bad habit - changes our reality - our plate of food. It changes how we think, what our current mood is, and what our end goal is. Remember that in every situation, good or bad, you must accept and not let it negativity impact you and your future!
If you want to know how this relates to food - try being angry while eating, or making pasta and expecting potatoes instead. It just doesn't work out the way you want it to, but you eat it anyways. Your life doesn't have to be this way. You don't have to eat the plate of food (your goals), you can change them!
So if you asked me what my purpose in this life is, I'd simply smile, look you in the eyes with my brown eyes, and tell you: This life of mine is exactly what I've made it out to be, and it will continue to unfold and be the book that I choose to write. I will encourage others to make positive choices in their lives in hopes they will make better people out of themselves and in turn hopefully change the planet one friendship at a time. My overall purpose is to have a positive impact on this planet, to the people on it, and to live a fulfilling life for myself by whatever means possible. Regardless of what the plate of food is, or how we eat it, we must have a solid agreement with ourselves on what we want to accomplish in this world, and we must let nothing stand in our way.
As always, thanks for reading - open to suggestions and feedback.
Sunday, April 6, 2014
Shadows of the past
On Friday a shadow -which I have not even thought about- was seen. It's like a groundhog coming out when nobody was looking. The shadow was only seen by a select few, who didn't like the shape of the shadow. They looked at it, and then proceeded to cast me aside as if the shadow had predicted some unseen future of catastrophic events. In the old days we'd look at this as some superstition or some lack of reasoning. I could go on and on about our historic failures based on not enough information, we've seen many things in our history of man based on rash decisions.
You would think a business in this day would be different. You'd think that, wouldn't you? I did. I was naive to think that a large organization would at least give me a chance to speak for myself, to talk to me about things.
If you have not caught it so far in this message, basically I got fired due to my background. The same background which landed me in jail for some time, and cost me nearly 8000$ total, a felony on my record, the same shadow which seems to never fade no matter how many sunsets come and go, it's the same thing that's so far in my past, I don't even remember people's names. Drugs, it was all over drugs. We're all young, adventurous, and quite naive about life at our earlier years. For me it was a bit more extreme than others I thought I was smarter than everyone. I was wrong. But I found out very quickly that I couldn't rely on so-called friends, girlfriends, or family to pick me up out of this giant crater that I formed in my own life, I had to do it myself. And this is what I've done.
It's been nearly 6 years since my 20th birthday, which I celebrated in a cell. I do not think I'll ever forget that, and I can surely tell you I don't think about it much. It's only when events happen that require me to explain "my record", or if I feel like telling my life story will somehow help motivate someone close to me. I'll go into detail again for their sake.
Over 5 years have passed, and I look at the 3.5 years of amazing IT career and 18 months of college where I got my associates graduating with honors, and I feel accomplished. I am not content with where I am in my career, and it makes it challenging. How do I continue to learn, grow, thrive, and excel if not given the opportunity to do so? I'll tell you how, find someone who will give me that opportunity.
As I digress, my anger seems to be at peak, my anger for which people judge me without even hearing their peers, without listening to my words, without even recognizing me as nothing more than a name, a number, a sheep. I will not be a sheep. I will not allow myself to become one of those people. See my value, or I'll move on to someone who will. Life is too short to spend the majority of my time working for someone who isn't going to appreciate me. Luckily I had a lot of appreciation for most of the last year or so, it's a shame that only recently that had to change.
I'm highly qualified, I'm highly skilled, I have an inept ability to thrive, and learn almost anything. It's rare that I am not able to figure something out, commit it to memory, compare it with logic to understand it and move on. I'm a very organized, fast paced, high energy person who thrives on his accomplishments and is enthralled by challenges. It's this type of environment that I need. It's this type of environment that I am now seeking. I can look at things from many perspectives, find the best solution, and plan a way to implement the solution with minimal impact on business productivity. These skills alone should be highly valued, as I do not see many people like me in the various jobs I have been. There is only one me, I have been through way too much in this life to look back, get down about this, or give up. I will succeed, I will make something of myself, and I will give back to this world. I will keep all of these thoughts in my head, these recent - more positive - thoughts over the next few weeks while I get back to job searching. I will keep remembering that not every company is full of capitalist ignorance, some will actually care about the single employee who manages their entire infrastructure.
I'm just trying to figure out how to do all of that and still maintain some semblance of good health. I'm working on that though....Now to find a better career opportunity now.
Thanks for reading my rant. I do actually feel better this time, not just words on the screen.
You would think a business in this day would be different. You'd think that, wouldn't you? I did. I was naive to think that a large organization would at least give me a chance to speak for myself, to talk to me about things.
If you have not caught it so far in this message, basically I got fired due to my background. The same background which landed me in jail for some time, and cost me nearly 8000$ total, a felony on my record, the same shadow which seems to never fade no matter how many sunsets come and go, it's the same thing that's so far in my past, I don't even remember people's names. Drugs, it was all over drugs. We're all young, adventurous, and quite naive about life at our earlier years. For me it was a bit more extreme than others I thought I was smarter than everyone. I was wrong. But I found out very quickly that I couldn't rely on so-called friends, girlfriends, or family to pick me up out of this giant crater that I formed in my own life, I had to do it myself. And this is what I've done.
It's been nearly 6 years since my 20th birthday, which I celebrated in a cell. I do not think I'll ever forget that, and I can surely tell you I don't think about it much. It's only when events happen that require me to explain "my record", or if I feel like telling my life story will somehow help motivate someone close to me. I'll go into detail again for their sake.
Over 5 years have passed, and I look at the 3.5 years of amazing IT career and 18 months of college where I got my associates graduating with honors, and I feel accomplished. I am not content with where I am in my career, and it makes it challenging. How do I continue to learn, grow, thrive, and excel if not given the opportunity to do so? I'll tell you how, find someone who will give me that opportunity.
As I digress, my anger seems to be at peak, my anger for which people judge me without even hearing their peers, without listening to my words, without even recognizing me as nothing more than a name, a number, a sheep. I will not be a sheep. I will not allow myself to become one of those people. See my value, or I'll move on to someone who will. Life is too short to spend the majority of my time working for someone who isn't going to appreciate me. Luckily I had a lot of appreciation for most of the last year or so, it's a shame that only recently that had to change.
I'm highly qualified, I'm highly skilled, I have an inept ability to thrive, and learn almost anything. It's rare that I am not able to figure something out, commit it to memory, compare it with logic to understand it and move on. I'm a very organized, fast paced, high energy person who thrives on his accomplishments and is enthralled by challenges. It's this type of environment that I need. It's this type of environment that I am now seeking. I can look at things from many perspectives, find the best solution, and plan a way to implement the solution with minimal impact on business productivity. These skills alone should be highly valued, as I do not see many people like me in the various jobs I have been. There is only one me, I have been through way too much in this life to look back, get down about this, or give up. I will succeed, I will make something of myself, and I will give back to this world. I will keep all of these thoughts in my head, these recent - more positive - thoughts over the next few weeks while I get back to job searching. I will keep remembering that not every company is full of capitalist ignorance, some will actually care about the single employee who manages their entire infrastructure.
I'm just trying to figure out how to do all of that and still maintain some semblance of good health. I'm working on that though....Now to find a better career opportunity now.
Thanks for reading my rant. I do actually feel better this time, not just words on the screen.
Friday, February 28, 2014
Stubborn Realities, Pt. 1
I'll call this paragraph my preface for the next several blogs.
The title Stubborn Realities speaks to my inner battles. Specifically my
willpower to overcome the Cystic Fibrosis, and the determination to make my
life one worth living.
This particular post is about two things,
one is my thoughts regarding my most recent doctors appointment, and the other
is the pseudo madness that is my career right now. Both are challenges that I'm
working towards overcoming. If you seem sad before this post is over, just keep
reading - I'll restore your faith in my perseverance.
In CF folk, the doctors measure how well
are lungs are doing by lung function tests. I'm sure you could 'internet' for a better understanding of what that is - but i'll try to summarize.
The test is called a pulmonary function test or PFT. Now this PFT measures 3
specific things. FVC, FEV1, and F25/75. The main number the CF Doc care
about is the FEV1. FEV1 represents the proportion of a person's vital capacity that
they are able to expire in the first second of expiration - aka how much air i
can blow out within the first second. There's a percentage based on how well my
lungs are doing compared to a normal person - taking into account my height and
weight. This specifically can tell a doctor how well the lungs are doing
(or not) without needing to even use their ears. The number below is in Liters.
Let's talk Statistics: (fev1 - liters)
03/15/11 - 3.55
10/16/12 - 3.36
10/25/12 - 3.77
01/13/13 - 3.39
03/05/13 - 3.69
04/04/13 - 3.49
05/30/13 - 3.57
07/18/13 - 3.47
08/29/13 - 3.43
01/02/14 - 2.91
01/16/14 - 3.34
01/23/14 - 3.28
02/27/14 - 3.17 (roughly 65% of what a normal person is)
So if we take a look at this currently,
and discuss the trend here, it doesn't seem to be a good trend at all. In
January I had CF-related pneumonia and am still fighting abpa currently. I'll
save the medical discussion for another time this is more about how I feel and what I
think about all of this.
My question to the doctor was: 'I'm a month
from being on heavy antibiotics, I should start to be doing much better than
what I am, right?' I'm 10 pounds heavier and I no longer have that pneumonia
that had me out of life for three weeks.. It only makes sense that I should go
back up towards the 3.50 numbers at least, but instead i'm declining? Does that
mean that the sickness causes permanent damage in my lungs? Does that mean that
I will never get back up towards 3.50? We'll use 3.50 as an arbitrary number, the percentages I'm shooting for are 70-75%. I asked the doctor these questions and
he told me maybe. Maybe it's permanent damage, or maybe it's still this
lingering sickness. I'm not really certain, and neither are the doctors. It's
hard to make that kind of call I think for definite. Why haven't I bounced
back?
What can be done? I'm a problem solver,
and this is a problem. My lungs aren't back to "normal" or even back
up to where they were just a few months ago. Millions of possibilities or
potential solutions swarm my brain trying to analyze what seems to be the best
fit. I go through every scenario of possibilities, perhaps it's just I haven't
been sleeping well, or perhaps it's the weather/climate, or perhaps it's the
added work stress, or maybe it's the stress of about to move into another
apartment? Okay so I have a lot of potential causing factors, but what can I do
about it? I'm a firm believer in only concerning myself with problems I can
solve, because otherwise I will fill my brain completely and I will be unable
to solve any sort of new problems that come up in life - because i'll be
completely full up. I see this all the time, people go into breakdown mode and
don't know how to function or solve their latest problem. I seem to do well at
focusing my brain and energy towards solving specific problems, why not apply
this to my health?
People say, "you should exercise,
you'll feel better." I don't think they are wrong at first glance, but
it's difficult for me to accept this piece of advice from someone who has no
idea how it feels to barely be able to take a deep breath. It's hard for me to
even contemplate advice given from someone who has no clue what it's like to
constantly cough things up and have to rely on medication to breathe slightly
normally. It's difficult for me to even accept advice from Doctors most times
for the same reasons. I'm not a lab animal waiting around to try all the
medications till one of them works.. Unfortunately I'm stuck on relying on
medication. There's no way around it, no amount of praying or breathing
exercises are going to help my lungs function during a normal day without
wheezing like some sort of anti-inflammatory. The other piece of exercise that
people don't understand is the looks I get when I attempt to work out in a
public place. The looks of concern people show me when they hear me cough or
wheeze, or see me trying to push myself harder.
It's difficult to overcome this, no matter what piece of advice anyone has to me, it's not going to change the way people look at me. I don't want their pity, I want their respect. I think things will get a little easier having a 24/7 gym in the same building as where I live, at least that's what I'm hoping. I hope to get back in the regimen of swimming in the summer as well. I belong to a few indoor pools, but i can tell you most days it's a struggle to keep my body temperature at a reasonable temp, let alone try to force myself to jump into a frozen indoor pool struggling to force myself to swim laps while freezing my arse off. I don't think my body retains heat like others, either its freezing or it's 1000 degrees, there's no happy medium most days. So what can I say to people so everyone understands me? Why is it so difficult to just listen to the words that I say and try to realize that the negative energy I receive from people looking at me in a gym is much worse than just not going at all in my opinion. I don't need negative energy, I don't need that sort of judgement or pity.
What I need is to find motivation to do things that don't require a gym membership, things at home like I started today. I've put on some weight recently, for me it's a significant amount (155lbs, up from 140ish). Today I did 3 sets of 10 pushups, 3 sets of 10 crunches, and 3 sets of 5 second leg lifts. I could have pushed myself past this point, but i think it's a good start and it provided me with an outlet- some motivation that it's easy. I should be able to incorporate this in my daily life. I think this is my key, I think is the solution - or not a complete solution but maybe working towards the problem I'm seeing with those statistics up there.
The problem I see is that, it seems like such a far reach to even try to feel like I'm healthy, let alone have these numbers prove it. I work out and it hurts. It hurts to cough. I end up coughing up blood at times or just coughing so much that my chest hurts and then for several days it hurts to breathe deep. I can't explain this to anyone who doesn't have CF who will truly understand, you just have to be try to put yourself in my shoes somehow. The thought of having permanent damage in my lungs, combined with seeing some statistic online saying the Median age of people with CF is in their 30s - makes for a very depressed and worn down state of mind. I don't know sometimes what I'm supposed to do. This life - my girlfriend, my career, my friends, and my hobbies distract me from my health. It's a beautiful thing most of the time, but it's also crippling. I can't focus on trying to feel better because I'm too concerned with my work, or my girlfriend, or my family, or my friends lives. I play games to escape and to challenge my mind constantly. My body isn't the best, but I'm pretty confident with my technical abilities, and my ability to learn new things. I'm not stronger than most people physically, but I am most likely stronger mentally - at least that's what people keep telling me.
---------->
It's difficult to overcome this, no matter what piece of advice anyone has to me, it's not going to change the way people look at me. I don't want their pity, I want their respect. I think things will get a little easier having a 24/7 gym in the same building as where I live, at least that's what I'm hoping. I hope to get back in the regimen of swimming in the summer as well. I belong to a few indoor pools, but i can tell you most days it's a struggle to keep my body temperature at a reasonable temp, let alone try to force myself to jump into a frozen indoor pool struggling to force myself to swim laps while freezing my arse off. I don't think my body retains heat like others, either its freezing or it's 1000 degrees, there's no happy medium most days. So what can I say to people so everyone understands me? Why is it so difficult to just listen to the words that I say and try to realize that the negative energy I receive from people looking at me in a gym is much worse than just not going at all in my opinion. I don't need negative energy, I don't need that sort of judgement or pity.
What I need is to find motivation to do things that don't require a gym membership, things at home like I started today. I've put on some weight recently, for me it's a significant amount (155lbs, up from 140ish). Today I did 3 sets of 10 pushups, 3 sets of 10 crunches, and 3 sets of 5 second leg lifts. I could have pushed myself past this point, but i think it's a good start and it provided me with an outlet- some motivation that it's easy. I should be able to incorporate this in my daily life. I think this is my key, I think is the solution - or not a complete solution but maybe working towards the problem I'm seeing with those statistics up there.
The problem I see is that, it seems like such a far reach to even try to feel like I'm healthy, let alone have these numbers prove it. I work out and it hurts. It hurts to cough. I end up coughing up blood at times or just coughing so much that my chest hurts and then for several days it hurts to breathe deep. I can't explain this to anyone who doesn't have CF who will truly understand, you just have to be try to put yourself in my shoes somehow. The thought of having permanent damage in my lungs, combined with seeing some statistic online saying the Median age of people with CF is in their 30s - makes for a very depressed and worn down state of mind. I don't know sometimes what I'm supposed to do. This life - my girlfriend, my career, my friends, and my hobbies distract me from my health. It's a beautiful thing most of the time, but it's also crippling. I can't focus on trying to feel better because I'm too concerned with my work, or my girlfriend, or my family, or my friends lives. I play games to escape and to challenge my mind constantly. My body isn't the best, but I'm pretty confident with my technical abilities, and my ability to learn new things. I'm not stronger than most people physically, but I am most likely stronger mentally - at least that's what people keep telling me.
---------->
Now let me discuss this work madness for
awhile, and perhaps you can see how it's driving me crazy. I'm currently
employed as a jack-of-all-trades IT guy, who manages servers of all sorts. This
has been an incredible career for me where I've skyrocketed into my position,
and have not stopped to look back ever since. My job is like 40% Project
management (implementing new technologies, or upgrading existing, etc), 35% Troubleshooting, and 25% helping end users (typically
developers). It's such an awesome job, where I have the freedom to research and
implement new solutions, I have a great boss and I'm being paid pretty well
also. So all of this sounds great, except lately it's been pretty hectic
because my company got acquired. So everything I love about this job may likely change. Luckily they aren't laying anyone off or
anything like that, it's just been a slow brutal process of waiting for a job offer to come in. I may report to someone in California soon, or I have no
clue what the future holds for me.
The two options that will be presented to me are this: 1) a full time job offer letter, or 2) a contract - short term job offer letter (could be 90 days, could be 6 months). Both of these have their advantages, depending on what the details of the job offer contain - might be better to have some sort of endgame and force me to find other career options, but then again a full time position could yield better pay and different experiences. This could be a great thing for my career, but where does that matter in the grand scheme of things? This new company is about 800 employees which is significantly larger than what I've been exposed to from the technology side so I could potentially excel up the corporate ladder.. and etc. I feel as though the uncertainty of not knowing what the future holds is exciting, but it's also very stressful. It could be even more stressful depending on what happens over the course of the next few weeks. I'm still hopeful that things will go good for me.
The two options that will be presented to me are this: 1) a full time job offer letter, or 2) a contract - short term job offer letter (could be 90 days, could be 6 months). Both of these have their advantages, depending on what the details of the job offer contain - might be better to have some sort of endgame and force me to find other career options, but then again a full time position could yield better pay and different experiences. This could be a great thing for my career, but where does that matter in the grand scheme of things? This new company is about 800 employees which is significantly larger than what I've been exposed to from the technology side so I could potentially excel up the corporate ladder.. and etc. I feel as though the uncertainty of not knowing what the future holds is exciting, but it's also very stressful. It could be even more stressful depending on what happens over the course of the next few weeks. I'm still hopeful that things will go good for me.
Is my work negatively affecting my health?
Even though I have fulfillment at my position and my career, is that
fulfillment enough to perhaps negate the years of my life that I will never get
back? I don't think I'll make it to retirement, so why not have as much as fun
while I can? Oh right, money. It always goes back to money.. Am I killing myself faster than my disease, just so I can attempt to get ahead in life quicker? What's it matter if I'm out of debt in 5 years when the next 5 years of my life will determine exactly how long I will be able to live on this planet? Everyday counts, and I need to remind myself that I will win. I must win. There is no other option but winning. But what does winning really mean?
To my friends and loved ones reading this: I look to you for motivation, positive energy, and direction. I think I understand how to solve this problem. What I need is alternative ways that I haven't already thought of. What I need is to be strong enough to push back and hopefully my lung function goes back up to what it was prior to getting sick in Dec/Jan. I need to keep moving. I'm looking to you for motivation, even if you don't realize it.
Subscribe to:
Posts (Atom)