(bear with me, it might be a long read, but i'm sure there is something in here that will benefit you)
Let me start by saying, aside from being killed by this disease, and maybe a few other weird aspects, I have been through most everything all other CF's have been through. From double pneumonia where they thought I was going to die very soon in my preteens, to massive life threatening hemoptysis where I personally, seriously thought I wasn't going to make it. Aside from lung transplantation, cepacia, and weird ass fungus balls eating me alive, i've been there, done/seen it all in my 37 years. And if I personally didn't experience it, I closely knew another CF who did, and I was with them during it.
Now with that out of the way, my purpose for this post. I massively believe in constantly setting positive goals for yourself. They don't have to be life changing goals for either yourself or others (though those are always the best!). They could easily be "I plan to watch less TV and read more". Or "I will get off my ass and finally apply myself in learning that one musical instrument I was always curious about". Or something more altruistic like "Today, during the course of my day, I *WILL* go out of my way to help 5 people".
I'm sure you get my point. As long as we continue to try and improve either our lives or others, via constant striving towards some form of goal, a single day is never squandered.
I used to work out in spurts. I would be very serious about weight lifting, achieve some gains, then lose interest and succumb again to apathy, lethargy, etc. Only briefly would I see the body benefits, then just not care anymore. So I never got any real good results, ever.
I grew up VERY poor, in VERY poor health (my early years) in a trailer with two other siblings, with a mother who was a career mother, she hadn't worked in 20+ years, aside from trying to put her husband through college. She showed up in Florida (from Brazil)with one very sickly little boy (me), and two little girls, with absolutely no belongings besides what we were wearing, with absolutely no support from anyone/anything. She finally found a small job being a secretary with a company willing to take a chance on her. Taking care of me and 2 little girls, without a father must have been excruciatingly hard. I remember as a little boy, walking into her room and overhearing her crying, asking god for help. For strength, for enough money for food, for me to get well health wise, etc etc.
Aside from Jesus, or maybe Job, I can't think of anyone who took more of a beating than my mom. She busted her ass, did her best, and we never wanted for any of the necessities. We all grew into good people, with high ethics and morals. Not to mention if it wasn't for her diligence regarding my early care, I'd easily be dead now. She turned that one ultra crappy situation to be in, and that ultra crappy job, into a wonderfully successful life. She is now a very powerful human resource director for a huge media company (and i'm still alive btw).
For all the love and excruciating pain my mother, family, and myself went through, no one knew crap about anything program wise for disabled kids/people. I found out about Vocational Rehabilitation by accident, from another CF patient. I lived in the "Oh I won't live to (insert any early age #), so why do anything or try?" philosophy. I wasted many a year in that realm. I played video games, and just wasted time in general. After I found out about Vocational Rehabilitation, and realized I wasn't going to die at 20, 25, 30...I was accepted by them, then I went to school at a community college. I went ultra part time, mostly due to laziness. I was 24, and not dead yet.
I finished my 2 year degree (with honors) after maybe 6 years of off and on again schooling (due to apathy, laziness, etc). I went and immediately applied to our local corrections dept (my degree was in criminal justice). I was literally laughed at, due to my work experience (lack of. The only jobs I ever had was when I was in my teens, and they were all closed). I was met with racism, constant skepticism, ignorance, and people fabricating every type of obstacle they could imagine and placing it in front of me. Even though I passed every test required with flying colors, both mentally, and physically.
After waiting 2 years for a final word on being accepted, I was finally fully denied. I knew it was wrong, they knew it was wrong. That doesn't matter, because no one/nothing is going to help you get back up and keep going, except for you.
I told myself I would go get the experience I needed in order to be seriously considered. I went with a company that was hard up for personnel that had a worthy education background. It was high end security. Guarding baby executives, dealing with their crap every day. These people never knew what it was like to have to blow their own nose, yet alone what myself and other disabled/CF patients have to deal with.
When I started this job I was fairly fat. Not horrible, but still chubby, from the many years of apathy. I was 5'11 and 225 lbs. Unless I am ultimate muscle boy (I wasn't, by far) that is just plain fat. I have no clue how bad that would put my BMI # into the stratosphere.
The days/nights I worked at first felt like an amazing challenge. Thursday midnight - 8am, Friday midnight - 8am (both graveyard shifts), then Saturday noon - midnight, Sunday noon - midngith (both 12 hour shifts). My work was comprised of walking 1.5-2 miles EVERY HOUR, in the VERY hot and humid Florida weather. My body could never get used to the schedule, because I would work graveyards for 16 hours, then do 24 hours of day-night shift.
There were many times I wanted to quit. I was covered in salt particles, all over my face/arms/back/neck. It looked like I threw talc all over myself. I was constantly in a battle to replace my sodium, potassium, and calories spent walking/biking up to 24 miles per shift. I worked 40-55 hours per week. On top of all that, was the regular regimen all of us CF's are aware of. Which was atleast 5 hours every day, just trying to stay alive via nebs, vest, etc.
So all that hard work, plus my care (without gym) = close to if not 90 hours a week busting my ass. I did this for over 2 years. This schedule and regimen would be enough to kill normal people, yet alone a 35 year old (when I started, i'm 37 now) cystic fibrosis patient. On top of that, I had a fiance to pay attention to, a house to take care of, and our cars, a sick mother who often needed my help with various other things, and general other responsibilities. The whole time, I was having bad lung bleeds. But I kept keeping on, and did what I could.
I followed all the rules associated with those on SS starting to work officially. I called them and told them what was up several times, when I should have. They kept telling me "Oh don't worry, your benefits are fine". I called them at my begining period of work, at my 9 month period, at the begining of that new year, and the begining of 2008. Every time, I got a variation of "Oh Mr. (name) don't worry, everything is fine, your benefits are fine. No need to worry".
Well that all came back to bite me in the ass, I owe a ton of money to them now, and the little amount I was able to save for a life with my family is going to be mostly taken away. Even though I followed their rules, and i won't even go into how it's from my fathers SS...Who worked for 50 years putting into it, and never touched a dime.
ANYWAYS (sorry to diverge down that path). In the middle of all that, about 9 months into employment, I said to myself "Maybe the answer to all this general misery is not to seek less misery, but to seek MORE misery". I started to think about what could possibly benefit me, but add more suffering to my life. Trying to weight lift came to mind. I had zero time to even scratch my ass, yet alone try and lift weights seriously. And when I say "seriously", I mean "at all".
I paid for my own gym. I walked into the facility, and said "I will either die trying to do what I want here, or succeed". My goals were: Build up my body, get healthier, get much stronger, don't die trying.
I couldn't move much of anything weight wise when I started. Not to mention, I only had maybe 30 minutes daily to dictate to this mon, wed, and fri. My entire life was rush rush rush, and this was no exception. So I had to become as efficient as possible with what I needed to do, and the time I had to do it in.
No one paid attention to me. Much like my entire life socially in school. Little by little, with the small amount of time I had, I made progress. What used to be 100 lbs, turned into 110 lbs. 110lbs turned to 125lb, etc etc.
It was the best therapy besides my vest, that I ever had. Every time I pushed a stack of weights AWAY from me, it was my physically manifested metaphor of CF, and all the crap from CF I have had to deal with in my life. I longed to do it more and more. Mon, Wed, and Fri for 30 mins per day. With every push away from me, I felt better inside. Like slowly cleansing myself of something toxic.
Well I didn't die. I still have that wonderful woman in my life. We are planning to have a child very soon. I am now a respected worker in my field. Even though now I have to go part time due to SS, it gives me MUCH more time to be a more complete person. It gives me the opportunity to further challenge myself with much greater fears. I plan on entering a real law enforcement academy of some sort soon.
And guess what? This 5'11 (now) 197lb 37 year old man with CF, can now bench press 380 lbs (8 45 weights, and the bar is either 20, or 45 lbs. If it is 45 lbs, i'm bench pressing over 400 lbs). Here is the pic for proof. That is me on the bench, getting ready to go into work, getting some gym time in:
<img src="http://img261.imageshack.us/img261/5615/img0211vo5.jpg">
I left out many other examples of adversity, because the story/examples was long enough as is. The point of this wasn't a poor me story. The point of this story was to show you, no matter how bad things are, no matter how bad you are compared to those around you, you should ALWAYS set goals for yourself, and never, EVER stop fighting!!!
If you believe in yourself, and never stop trying to climb that hill, you will of course slide down a bunch...But you eventually will reach the top. And even if it's the top of a very small hill only in your yard, it's YOUR hill, and you just climbed it!!
Even if you are bad off now health wise, just stop and think of all the adversity you have been through, that most people would never be able to fathom, yet alone live through. Realize you are special. Realize you are being judged at a different level than those "normal" people around you who seem to have it so easy. Come to the conclusion, that as horrible as your disease is, if it wasn't for this horrible disease, you wouldn't be anywhere near the person you are today. Everything from our likes, dislikes, sense of humor, and personality is partially molded by this horrible disease. Appreciate it for that, but never stop fighting it. NEVER give up. I didn't, and won't, ever.
Let me start by saying, aside from being killed by this disease, and maybe a few other weird aspects, I have been through most everything all other CF's have been through. From double pneumonia where they thought I was going to die very soon in my preteens, to massive life threatening hemoptysis where I personally, seriously thought I wasn't going to make it. Aside from lung transplantation, cepacia, and weird ass fungus balls eating me alive, i've been there, done/seen it all in my 37 years. And if I personally didn't experience it, I closely knew another CF who did, and I was with them during it.
Now with that out of the way, my purpose for this post. I massively believe in constantly setting positive goals for yourself. They don't have to be life changing goals for either yourself or others (though those are always the best!). They could easily be "I plan to watch less TV and read more". Or "I will get off my ass and finally apply myself in learning that one musical instrument I was always curious about". Or something more altruistic like "Today, during the course of my day, I *WILL* go out of my way to help 5 people".
I'm sure you get my point. As long as we continue to try and improve either our lives or others, via constant striving towards some form of goal, a single day is never squandered.
I used to work out in spurts. I would be very serious about weight lifting, achieve some gains, then lose interest and succumb again to apathy, lethargy, etc. Only briefly would I see the body benefits, then just not care anymore. So I never got any real good results, ever.
I grew up VERY poor, in VERY poor health (my early years) in a trailer with two other siblings, with a mother who was a career mother, she hadn't worked in 20+ years, aside from trying to put her husband through college. She showed up in Florida (from Brazil)with one very sickly little boy (me), and two little girls, with absolutely no belongings besides what we were wearing, with absolutely no support from anyone/anything. She finally found a small job being a secretary with a company willing to take a chance on her. Taking care of me and 2 little girls, without a father must have been excruciatingly hard. I remember as a little boy, walking into her room and overhearing her crying, asking god for help. For strength, for enough money for food, for me to get well health wise, etc etc.
Aside from Jesus, or maybe Job, I can't think of anyone who took more of a beating than my mom. She busted her ass, did her best, and we never wanted for any of the necessities. We all grew into good people, with high ethics and morals. Not to mention if it wasn't for her diligence regarding my early care, I'd easily be dead now. She turned that one ultra crappy situation to be in, and that ultra crappy job, into a wonderfully successful life. She is now a very powerful human resource director for a huge media company (and i'm still alive btw).
For all the love and excruciating pain my mother, family, and myself went through, no one knew crap about anything program wise for disabled kids/people. I found out about Vocational Rehabilitation by accident, from another CF patient. I lived in the "Oh I won't live to (insert any early age #), so why do anything or try?" philosophy. I wasted many a year in that realm. I played video games, and just wasted time in general. After I found out about Vocational Rehabilitation, and realized I wasn't going to die at 20, 25, 30...I was accepted by them, then I went to school at a community college. I went ultra part time, mostly due to laziness. I was 24, and not dead yet.
I finished my 2 year degree (with honors) after maybe 6 years of off and on again schooling (due to apathy, laziness, etc). I went and immediately applied to our local corrections dept (my degree was in criminal justice). I was literally laughed at, due to my work experience (lack of. The only jobs I ever had was when I was in my teens, and they were all closed). I was met with racism, constant skepticism, ignorance, and people fabricating every type of obstacle they could imagine and placing it in front of me. Even though I passed every test required with flying colors, both mentally, and physically.
After waiting 2 years for a final word on being accepted, I was finally fully denied. I knew it was wrong, they knew it was wrong. That doesn't matter, because no one/nothing is going to help you get back up and keep going, except for you.
I told myself I would go get the experience I needed in order to be seriously considered. I went with a company that was hard up for personnel that had a worthy education background. It was high end security. Guarding baby executives, dealing with their crap every day. These people never knew what it was like to have to blow their own nose, yet alone what myself and other disabled/CF patients have to deal with.
When I started this job I was fairly fat. Not horrible, but still chubby, from the many years of apathy. I was 5'11 and 225 lbs. Unless I am ultimate muscle boy (I wasn't, by far) that is just plain fat. I have no clue how bad that would put my BMI # into the stratosphere.
The days/nights I worked at first felt like an amazing challenge. Thursday midnight - 8am, Friday midnight - 8am (both graveyard shifts), then Saturday noon - midnight, Sunday noon - midngith (both 12 hour shifts). My work was comprised of walking 1.5-2 miles EVERY HOUR, in the VERY hot and humid Florida weather. My body could never get used to the schedule, because I would work graveyards for 16 hours, then do 24 hours of day-night shift.
There were many times I wanted to quit. I was covered in salt particles, all over my face/arms/back/neck. It looked like I threw talc all over myself. I was constantly in a battle to replace my sodium, potassium, and calories spent walking/biking up to 24 miles per shift. I worked 40-55 hours per week. On top of all that, was the regular regimen all of us CF's are aware of. Which was atleast 5 hours every day, just trying to stay alive via nebs, vest, etc.
So all that hard work, plus my care (without gym) = close to if not 90 hours a week busting my ass. I did this for over 2 years. This schedule and regimen would be enough to kill normal people, yet alone a 35 year old (when I started, i'm 37 now) cystic fibrosis patient. On top of that, I had a fiance to pay attention to, a house to take care of, and our cars, a sick mother who often needed my help with various other things, and general other responsibilities. The whole time, I was having bad lung bleeds. But I kept keeping on, and did what I could.
I followed all the rules associated with those on SS starting to work officially. I called them and told them what was up several times, when I should have. They kept telling me "Oh don't worry, your benefits are fine". I called them at my begining period of work, at my 9 month period, at the begining of that new year, and the begining of 2008. Every time, I got a variation of "Oh Mr. (name) don't worry, everything is fine, your benefits are fine. No need to worry".
Well that all came back to bite me in the ass, I owe a ton of money to them now, and the little amount I was able to save for a life with my family is going to be mostly taken away. Even though I followed their rules, and i won't even go into how it's from my fathers SS...Who worked for 50 years putting into it, and never touched a dime.
ANYWAYS (sorry to diverge down that path). In the middle of all that, about 9 months into employment, I said to myself "Maybe the answer to all this general misery is not to seek less misery, but to seek MORE misery". I started to think about what could possibly benefit me, but add more suffering to my life. Trying to weight lift came to mind. I had zero time to even scratch my ass, yet alone try and lift weights seriously. And when I say "seriously", I mean "at all".
I paid for my own gym. I walked into the facility, and said "I will either die trying to do what I want here, or succeed". My goals were: Build up my body, get healthier, get much stronger, don't die trying.
I couldn't move much of anything weight wise when I started. Not to mention, I only had maybe 30 minutes daily to dictate to this mon, wed, and fri. My entire life was rush rush rush, and this was no exception. So I had to become as efficient as possible with what I needed to do, and the time I had to do it in.
No one paid attention to me. Much like my entire life socially in school. Little by little, with the small amount of time I had, I made progress. What used to be 100 lbs, turned into 110 lbs. 110lbs turned to 125lb, etc etc.
It was the best therapy besides my vest, that I ever had. Every time I pushed a stack of weights AWAY from me, it was my physically manifested metaphor of CF, and all the crap from CF I have had to deal with in my life. I longed to do it more and more. Mon, Wed, and Fri for 30 mins per day. With every push away from me, I felt better inside. Like slowly cleansing myself of something toxic.
Well I didn't die. I still have that wonderful woman in my life. We are planning to have a child very soon. I am now a respected worker in my field. Even though now I have to go part time due to SS, it gives me MUCH more time to be a more complete person. It gives me the opportunity to further challenge myself with much greater fears. I plan on entering a real law enforcement academy of some sort soon.
And guess what? This 5'11 (now) 197lb 37 year old man with CF, can now bench press 380 lbs (8 45 weights, and the bar is either 20, or 45 lbs. If it is 45 lbs, i'm bench pressing over 400 lbs). Here is the pic for proof. That is me on the bench, getting ready to go into work, getting some gym time in:
<img src="http://img261.imageshack.us/img261/5615/img0211vo5.jpg">
I left out many other examples of adversity, because the story/examples was long enough as is. The point of this wasn't a poor me story. The point of this story was to show you, no matter how bad things are, no matter how bad you are compared to those around you, you should ALWAYS set goals for yourself, and never, EVER stop fighting!!!
If you believe in yourself, and never stop trying to climb that hill, you will of course slide down a bunch...But you eventually will reach the top. And even if it's the top of a very small hill only in your yard, it's YOUR hill, and you just climbed it!!
Even if you are bad off now health wise, just stop and think of all the adversity you have been through, that most people would never be able to fathom, yet alone live through. Realize you are special. Realize you are being judged at a different level than those "normal" people around you who seem to have it so easy. Come to the conclusion, that as horrible as your disease is, if it wasn't for this horrible disease, you wouldn't be anywhere near the person you are today. Everything from our likes, dislikes, sense of humor, and personality is partially molded by this horrible disease. Appreciate it for that, but never stop fighting it. NEVER give up. I didn't, and won't, ever.