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.