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.

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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.

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. 

Passion

What is passion to you? I find the definition to be pretty on point with my rant this evening: strong and barely controllable emotion.

I would consider myself a great judge of character. It has been only because of my hardships, and my lack of self confidence growing up that I was gullible to a fault, and wanted to only see the good in people. I now look past that and try to see all sides of peoples intentions and peoples demeanor.

I love the quote, "You are who you associate with", and I live my life by this saying. To me, if you want to know who you are, you should just look at the people around you and they will tell you exactly what you need to know. I find myself surrounded by kind-hearted, passionate people. I seem to be drawn to these kinds of people the most. I look up to passionate people. I even strive to achieve goals based on the fact that others tried passionately and some succeeded.

In my own view, passion is the one of the best traits a person can have. I respect passion from a person more than anything else other than their true genuine nature. I find deep connection with people who live their lives by passion and don't even know it.


Passion for a musical instrument produces a quality musician that everyone wants to hear play. One that can change your mood, change your emotions, and influence you positively by just passionately doing what they love. Even if I can never understand why people would make their lives around playing music, I can respect the fact that they enjoy it enough to make it their entire lives, and they are passionate enough to try to make it work.

Caring for animals in a way that only can be described as passion. I can relate to this kind of passion everytime I pet a dog or cat, and they instantly connect with me. I've had people tell me in the past that my connection with their dog who usually doesn't befriend people was bizarre. Cats usually like me too. We'll say I relate with the inner instincts in those animals, and try to sense what they are feeling. My passion for animals isn't a tenth of the care and love I've seen people display - the kind of people who work for zoo's or for vet hospitals, etc.

It doesn't matter what the career is, you can pick the passionate people apart from the ones who are just there taking up space. You can see the drive in their eyes, you can almost sense the focus in the air when being near these people. It's the kind of people who are successful and you can never picture them as anything but successful. These kinds of people are fueled by passion. These are the kinds of people I want constantly in my life, to show me how to utilize this passion.

Passion to me is best explained by combining dedication with a sense of curiosity, and an overwhelming flame of energy and emotion. For me, that passion comes from your inner soul, your inner energy, the kind that gets stored up inside waiting to be released and focused onto a single desire, a single outlet.

What kind of person are you without passion? What kind of life are you living, where you don't constantly seek to enjoy a life fueled by passion?

I find myself getting passionate about various things and it makes me feel so alive. It's the reason I own a motorcycle, it's the reason I downshift and accelerate, it's the feeling I get when I get to the top of the 30 foot wall in rock climbing, it's the feeling I get when starting on the top of the mountain, or the feeling I felt when jumping out of an airplane. It's the spark of energy that keeps me going when I should quit. It's the spark of fire that keeps me wanting to take on more and more challenges to the point of being overburdened and overrun with tasks and priorities. Every affectionate kiss to her lips, every passionate stare in her eyes. It's the reason I thrive. It's the reason I breathe.

Sometimes I wish I could store passion up to use it later, or to force myself to work out more or do things I want to do in life. I don't think passion would mean as much if it wasn't such a spontaneous feeling of overwhelming joy. If there's ever a day I lose my passion, or my sense of humor for good, that's the day that I will be gone forever. Till then, I'll be happy to positively influence each and every one of you with my passion when you're feeling low on your own.

Work to live, or live to work?

I find myself often considering whether I'm living to work, or working to live. I see many people older than me in bad health situations- retired or still working- wondering if they will do anything else with their lives before they pass. I try not to be morbid as a rule, but sometimes it comes out.

My dilemma comes from the idea of working x number of years and then retiring, with taking into account the idea of these being my healthiest years, and my health only to decline. You could suggest that I am being negative, but anyone who has CF will tell you, it takes a lot to stay upbeat.

So, I put myself through college for an associates degree, I dove head first into an internship, which landed me my first job in the IT field. I worked for that company for 2 years, and now I'm about a year and a half later, after quitting that job to find myself in a passionate mindset about one thing. I do not want to work myself to death, and not enjoy the somewhat good health I have. So what to do about this?

Those who know me would rightfully suggest that I'm an excellent problem solver. My older sister whom I rarely visit was surprised at how easily I could plan and try to get the family together, as we planned our last week long vacation together. My co-workers get used to my ability to fix all of their problems that I'm an often source of answers to all of their problems, at any given time. Often I find myself taking on large scale problems or projects as a way to put my skills to use. I enjoy the IT field, I never have the same day twice, it's all about project management, learning new things and solving problems, and I seem to do these things really well. Almost to the point of being arrogant about it..

My mindset of being an "exempt" worker is starting to turn pretty stale. (Exempt from overtime, expected to work/be available all the time) I find myself wondering what kinds of other positions I can find, that bring more work-life balance and less work stress BUT still provide me with the challenge and the ability to use my quick thinking skills to solve problems. In the IT field, you're expected to be available all the time, as computers never sleep. I find myself wondering what I would do if I didn't have debt to pay off, wondering if I would even work fulltime if I didn't have to. I find myself wondering how to break out of this 9-5 routine, and find something more culturally acceptable to that work-life ratio that I desperately need.

So a 'normal' person, one who expects to live at least 50-60 healthy years, has no problem with pushing their bodies in their 20s. If you disagree I challenge you to find someone you know in their twenties and ask them if they have friends who drink a few times a week, and still work a full time job. It's to be expected that your/their body can bounce back from that sort of thing, I mean, you're/they're healthy right? However my dilemma I face, without being to morbid is I don't expect to live 50-60 healthy years, I don't have the luxury of trashing my body and worrying about it later, I have to try to be older than I am with the mindset of, how do I settle down and enjoy life?

I just recently got over pneumonia, and it's not the typical - fluid in your lungs kind, its more like the CF-induced overly beaten down pseudomonas aeruginosa infected kind of pneumonia. The kind that where my lung function dropped 15% and the I'm still not at that high point again. Not sure if that bit of lung function is recoverable or not, I find myself having the lack of energy or willpower to strain myself enough to try to find out.. My nurse looked me dead in the face and said, if I can't find work/health balance, I need to find a new career. It was a wake up call really. And so I was sick and I am extremely fortunate to have an amazing job check up on me and show their appreciation for my work by giving me an award (long time coming, not really a pity kind of thing) for my excellent work ethics; while being supportive of my health condition and allowing me time to recover before returning to work, I find myself at a rested state of mind, wondering what I'm really straining myself working like this for. 3 weeks of an PICC in my arm, and lots of antibiotics, to get me somewhere back to what my normal is, and i'm still not there yet a month and a half later. Still on some crazy medication in hopes that it's actually helping, wondering what's next for me.

I feel like the mindset of companies in america, or at least the ones in my area have this business culture ingrained in the brains of the CEOs running these companies, that you must have all workers work 5 days a week, and 8 hours a day to have an effective business. It's worked this far, why would it not continue to work? I'm not talking about all 9-5 jobs, I'm talking about high pressure, high expectations, high energy required jobs. My kind of job, specifically revolves around not making mistakes and making sure an entire infrastructure manages to stay running smoothly, so the engine that makes software (the company i work for) can continue to produce as expected. IT is a field for only a select few, but many try anyways. It's a field of expertise that you need someone to be able to juggle multiple priorities, that change everyday, without getting overwhelmed, and being able to think about solutions and ways to fix problems. The good IT folk can do half of this, the great ones get paid a lot, and they are few and far between. I fall into the category that does my job better than anyone I've ever met. I find that meeting people in my field just teaches me how to do my job better, and to better proceed. I can pick up a new piece of software or technology, and learn it inside and out without ever picking up documentation. It's something that comes easy to me, and I enjoy it thoroughly.

The problem is, I think it's killing me quicker than it should be. It's a double edge sword, I want to be in a position where I can work as hard as I need to, but not be overworked, and still be challenged and fulfilled - BUT I don't want to be in a position where I am being taken advantage of, and just waiting to be replaced by someone who is 'normal' and can take this kind of abuse to their mental/physical body. I complain or speak out and it makes me seem inadequate for the position, or that i'm "taking the victim role". I say nothing and I continue to distract myself with projects and wait for something else to come along or for me to become passionate enough to change my mind.

So I think I'm living to work currently, paying off this debt I got myself into. I find myself like I feel like I'm always on call and I always have to fix everything. It's not a bad thing per-say, promotes job security..

 I will win, I'm just not sure how right now. It's good to get my thoughts down though.