45 minutes until Christmas Eve!

So it’s December 23 at about 11 o’clock in just a bit it will be Christmas Eve! This time of year I really get a lot of “natural high” from the smells, sights, and sounds…It rocks! I finally figured a good way this year to get some stuff done quicker…look online first and then go shop if you need to, lol. I know obvious, right? Nope, not for me, I usually just suck it up take some Advil or Ibuprofen, and hit the stores for hours on end. I’m also super weird about what I get people, and it takes me TIME. Triumph, I finally got it done, I’m ready for Christmas…time to relax. Warming seasonal beverages, egg nog, good food, and family are just my favorites and everything else that goes with it is an bonus. I enjoy presents, and I prefer giving more than receiving actually but, its all fun! Well its late, I’m tired, and sore from sitting in the same position for 2 hours wrapping presents…sweet!?…no. Merry Christmas!!

Frustration with no end in sight.

It’s a couple of days before Christmas, and those “little problems” are starting to pile up and become extremely taxing. Going out to try to shop, maybe enjoy a bit of the season like a normal person seems farther and farther from sight every year. In the face of difficulty I am an extremely positive person, but the mind/body can only handle so much before it gives, that is where I seem to be right now. I try to keep my chin up and not let it bother me too much, but I have to admit this year it has become much more difficult to do the simple things. No matter what I will never give up, I’m a fighter, I will go down fighting…until my last breath…literally.

I have done a bit of Christmas shopping, and got to grab lunch/catch up with an old friend recently, and it was great. It is very much the little things that make life with CF (any terminal or lifelong illness) harder, on the flipside it’s also the little things that make it so I can keep going, for that I am extremely grateful. So, on that note I hope everyone has a very Merry Christmas, and a happy New Year!

It’s Friday! With CF…

As I sit here it’s Friday afternoon December 16th, it’s about 4:00 and I’m finished with all of my tasks, chores, work, etc. for the next few hours I can sit here and mess around on the computer…when I first got onto this site I wasn’t totally sure what I was doing. Now, I realize it’s more of a website, with the ability to blog and connect with people. I am kind of behind the curve when it comes to the “newest social, technological” stuff. I don’t have an Instagram, or snapchat. I’m always a little late to the party, and eventually I’ll probably have all the social media apps…as of now I’m just on Facebook, I used to have a MySpace (I know old school as hell!) lol. So, starting this site was a new experience for me, but I like it, I enjoy the ability to share my story and I’ve already created a couple of blog posts, this being the latest. Back in the day I could easily feel my way around a computer or the latest game system or gadget just fine. Now, I feel like an old man, I don’t know how half of this stuff works and it’s funny to see the circle come around fully. Again, it’s Friday afternoon, and I’ve got a few hours I can use on something I wouldn’t normally, so I’m gonna shoot the shizznit so to speak.

It got really cold here in GA in the last couple days, like way cold! When the weather changes like this it reminds me of being back at Southern waiting to come home for Christmas break, or already being home. Going out with friends, partying, etc. was part of what I enjoyed about this time of the year. As I sit here writing and thinking I havent been “out partying” in a long time. Now I will go out occasionally, but not like I used to. My body just can’t handle that stupid stuff anymore, nor do I have the desire to do so, guess I grew out of it…lol. The funny thing I have noticed as the years go on is the way I portray myself or the way I wish to be portrayed. I don’t desire the party life anymore, or to be the life of the party, and it’s a good thing because my body isn’t made for that kind of life. Also, I realize how much dumb stuff I got away with doing that I definitely wouldn’t get away with now, especially being that the CF has reared its nasty head into my life pretty intensely in the past several years. Due to my health I try to look at things from a positive POV as opposed to a negative being that I deal with so much negative already on a regular basis. I enjoy the fact that I had those experiences and the person it made me is much more capable, my mental fortitude is leaps and bounds over what it used to be, and I’m just more experienced in this thing we call life. However, sitting here with nothing to do does allow me to stroll down memory lane…bringing up some great memories, but also some bad ones.

Let’s go back a few years…2005-2009 era. I was a recent high school graduate who was in pretty good shape physically and mentally. I had a really bad experience with a doctor around then that i’ll write about another time. So, back to the portrayal of my Cystic Fibrosis towards the outside world. I didn’t want people to automatically associate me with being a “sick person” so I didn’t let that stuff show, except to a small percentage of my close friends, maybe my roommate’s really knew, my really close friends, and my immediate family. Other than that you wouldn’t know I had a problem in the world, and that’s the way I liked it. I worked out religiously, was actually pretty jacked, tanned every other day, and was out at the bars Thurs-Sat like everyone else. Hitting on smokin’ sorority girls and getting into trouble with my fraternity brothers, it was great! However, the next day i’d be puking my guts out sick as a dog while all my buddies were up and maybe a bit hung over but nothing in the realm of what kind of hell I was bogging through, i’ll just say I was an idiot and did some unintelligent things. I was young, naive, and invincible…or so I thought. For instance, Friday I had no classes, so after we were ok from the night before we’d all get together. We usually got together at mine or my pledge brother’s house, as our house was by far one of the coolest houses in Statesboro, with a pool in the backyard, a sick ass wrap around back porch, and even what we called the “tiki hut” which was a small shed we used to store stuff, it even had a service window which made it amazing for parties. It also housed the majority of our outside entertainment: golf clubs, pool toys, frisbees, footballs, etc. It was also where we kept our outside music system so we didn’t have to worry about it getting wet. It truly was one of the coolest setups i’ve ever seen, especially in Statesboro. So, after we all got showered and swagged out we’d all meet at the house to park for the night and start our shenanigans. I’d say on a normal night there’d be anywhere from 3-10 of us pregaming at one house or another. We were kind of known as the party fraternity, we were one of the first fraternities on greek row and we had a reputation: girls either hated us or loved us…there wasn’t much in between. But, I will say it was because we were pretty crazy, we used to say “don’t threaten me with a good time.” Anyways…once we’d figure our plans for the night we’d get ready and then go HAM…it was all about how much fun we could have, how much partying we could do, and how many girls we could get to go dirt road ridin’ with us. So, we’d get a driver to pick all of us up, and take us where we were going for the night, or where we’d start the night. It was purely about hedonistic, balls out, badass fun. Every second of it was a great experience, and we all were brothers to the core. This was our routine basically every week starting on Thursday after classes let out.

Anyways, in doing all of this I was doing two things mainly: trying to enjoy every second I could (I was totally aware at some point my health would start deteriorating) and trying to hide what symptoms i did show of the CF like my cough, spitting, going to the bathroom more frequently, etc. But, i did a pretty good job of camouflaging this stuff for a good long while. Actually, I was more prone to over compensate based on the CF, so It was easier to hide my problems if I was at my house, or a friend’s house, as compared to going to the bars…but, when i went to the bars i overcompensated even more, it was bad. So, to shorten a really long story…I overcompensated by being super macho, and overdoing things to show that my CF didn’t have any bearing on what I did or who I was. It was a great lie that I told the whole world, and sometimes even myself. I have some of the best memories from those times, I also have some times I can’t remember entirely, and some of the worst times of my life all rolled into one college experience. I wouldn’t take it back, because it made me who I am today, however, if I had a time machine I would definitely do some things a bit differently…to say the least. LOL

This post kind of took several off shoots and different storylines, I may go back and clean it up a bit, but the point of this website, and blog is to show you the unfiltered life of someone with Cystic Fibrosis, not just the good, or just the bad, but an entire picture…with as many details as I can remember. Wow, as I sit here having insane trips down memory lane, looking through pictures, reading stories, posts, notes, and old messages it is enveloping me in the life I used to live. It gives me mixed feelings, as I wish I could be young again. Like everyone says when you’re a kid you want to be an adult, but when we grow up all we want is one last run as “kids.” So, I may tweak this later, but it’s Friday…i’m going to make some grub and relax my body/brain from a draining and grueling week. Enjoy your weekend, enjoy life, and thanks for taking that trip down memory lane with me!

One of those days…

It’s Sunday afternoon, as I sit in my room watching American Dad and playing some computer games…I decided it’s a good time to write a bit. This is one of those days that isn’t particularly good or bad, and sometimes those are the hardest days to handle. As feeling like crap is the norm I expect it to return, but I also feel good enough that I kind of want to go out and do something. Being that my finances are severely tight, I have opted to just stay in and watch some good TV, and now I’m writing this blog to explain this weird state of being to people who don’t understand, or to those who are in the same boat, and wish they could paddle away from this damn situation. It’s VERY rough to say the least…

So, most people are out shopping or running around doing holiday type stuff, enjoying free time, family time, or fun time. Sadly, I sit here waiting for the other shoe to drop…and it’s an extremely depressing way to pass time. My mind races, my thought’s go to dark places and the whole time I’m doing/using every “trick” or “body hack” I can think of to make things easier. I have a pretty good control over my emotions, I didn’t used to, but over the past 5-6 years I have developed a really great sense of what I actually feel, and how to handle myself physically even if my mind is exploding with an unwelcome sense whether it be depression, exhaustion, loneliness, or just boredom. It is rather strange what the human body can adapt to, I am a walking billboard for the strangeness a person can get used to, and I have to say it sucks!

It’s almost 4pm, this is one of those times where a normal person would say “I’m gonna go do something,” then they’d get out to go do something, whether be it shopping, seeing a movie, or just cruising around with a friend. I sit here, like I said earlier, waiting for the CF to rear its ugly head into my day, I know it will at some point, and all I can do is minimize the effect it has on me. I have gotten to a point where I have control over my angst and have developed the mental capacity to understand that is just the way my life is, Cystic Fibrosis is a progressive, degenerative disease it’s only going to get harder. So, I deal the best I can, but I have to admit this is the time of year I miss out on a lot of things I wish I could do, and it becomes extremely lonely…moreover, uncomfortable (aside from the physical discomfort I deal with from the actual CF) just an uneasy feeling. I guess I would define it the most accurately by saying it’s like the worst anticipation of the unknown you can imagine, however the unknown isn’t exactly unknown, being that I actually know what is coming. Having said that, even though I know (kind of) what is coming and how it will feel, the “unknown” for me is: at what intensity level will it hit me? How bad will it get today? What time will it interrupt whatever tasks I am doing to occupy my mind? Finally, and maybe the worst part of the anticipation is what if today is “The Day?” As CF is terminal, I never know when I’m going to wake up feeling ok, only to have that be the last time I awake…

This post is a bit darker than I intended when I commenced my writing, and I know that it is hard for some people to even think about things in this manner. With that being the case, I also need to say having CF (or any terminal illness) makes it easier to think about things like this because that’s my “normal,” it’s what I’ve been dealing with since I was 3, and it’s basically all I know. I have had to ponder the consequences of living a life with CF, and contemplating death from the first time I was told what my life expectancy was, or whatever age I was that I was able to comprehend things of that nature. It sucks pretty bad having that kind of thought process, but it has allowed me to get to a place where those thought’s don’t take me into tailspin of emotions I wouldn’t wish on my worst enemy. Yes, it’s hard to think about…yes, it sucks in a major way…yes, it isn’t what I would ideally like to be doing or thinking, but I am at peace with the fact that I am going to deal with this until I die.

So, to sum up I guess I would say today sucks in the best way possible…I am feeling ok right now, but at some point I will start to feel terrible, I know that and am at peace with it. I will deal with the agony of the symptoms of the Cystic Fibrosis as they come on, until then I am kind of in a state of limbo. I will do what I can to take advantage of the fact that I haven’t gotten to the worst part of my day yet by enjoying, as best I can, the time I have today where I still don’t feel like death is knocking at my door. I hope if you read this you don’t get put off by the tone, I am just being as genuinely open about this as I can be. If I can reach one person who feels the same, or doesn’t really understand how they feel, but knows it sucks, then I will have accomplished what I set out to do. As I was once that person, looking for something to explain the “why” of having to deal with such horrible things all of the time, looking for something to allow me to feel like I wasn’t the lone ranger, even for a split second…looking for someone who understood.

 

 

The Holiday’s…yay?

Oh good, the holidays are here. Ahhh…for most people stress levels go up, although CF patients tend to have a highly developed ability to deal with stress, pain, disappointment, etc. it still gets multiplied, lol yay! You kind of have to develop these abilities early in life or everyday is going to be a personal hell, moreover, one that nobody else can actually see. Trust me I’ve been their and it’s absolutely miserable beyond compare, and with the invisibility factor can be a down right mind job. But, there is light in the darkness of the bad health tunnel. Here’s a peak into mine…good and bad. With a focus on the daily routines of a CF patient, dealing with holiday situations, family, and friends.

So, the Thanksgiving and Christmas stretch of the year…Don’t get me wrong there is a magic about this time of year that I love. However, this is the time of year when people get together for this and that, shopping, huge meals, and family functions are exponentially harder with something like CF. Planning everything from what time you have to be asleep by so you have enough energy, but also so you have enough time to go to the bathroom and do your treatments in the A.M. Then to making sure to the best of ones ability that no other people with compromised immune systems are having any health issues currently (older folks, and babies). To making sure you’ve got enough meds to get you through whatever events or functions you are going to do. These many miscellaneous things that normal people probably don’t even consider, or just take for granted are some of the most difficult parts of having an invisible disease. I can’t just wake and get showered and dressed in less than an hour like most people…I have to wake up, and slowly allow my muscles to uncramp from the nighttime of not moving. Then comes “the morning fun,” the mucus…oh dear lord the mucus, coughing until you throw up is something that is never going to become an acceptable routine…It SUCKS badly!!! Then comes actually doing regular personal morning things: going to the bathroom (another thing most people take for granted), making something to eat that you can choke down, and not get sick over. Some more coughing, occasionally coughing up blood…one of the most jarring, sickening, and unsettling things that happen with CF. No matter how many doctors tell you coughing up a little blood now and then is a normal thing with CF…spitting up that metallic taste, looking down in the sink, trash, or paper towel and seeing red sucks the positivity right out of you. Not to mention constantly feeling so tired you could sleep standing up, in a shopping mall. Daily life with Cystic Fibrosis itself is taxing on the body, and that is just the physical side as mentally it is a totally different level of intense, ragging you out down to your soul and rattling your bones for good measure.

Meanwhile, the days keep going by and things keep moving with or without you. As people tend to make plans for the holidays sometimes we just have to say “you know I’d love to be there for dinner at 4-5 but I’m still in the bathroom…” After this happens so many times sadly, but totally understandably people start to marginalize you. You find friends don’t invite you places after you’ve had to cancel, family starts going ahead and celebrating without you, and that can be extremely hard to handle, it gets to you in that place that most people rarely have to experience. Holidays are great times to make memories, and enjoy family and friends, but knowing how to handle these things with a health problem takes time, patience, and practice. Just know if you do have trouble due to a CF-like condition you’re not alone, you may feel alone, but you’re not. Learning how to cope with an invisible illness is almost as hard as the illness itself sometimes…which is kind of ironic in a “sick” way, lol.  Funny that’s kind of just scratching the surface of one small time of the year. I could probably go on and on bitching about the things that are hard about CF especially around holidays, or any of the celebratory times of the year.

Having said all of that, the best combatant I have found to not letting this totally overwhelm and consume you, your thought’s, and spirit is keeping things in perspective. This is something that clicked in my brain back toward the end of college: you can either be totally miserable all the time worrying about other people’s normal, knowing that it’s never going to be that way for you or really even get any easier, or you can focus on the things that bring you small bits of joy here and there. With a  disease like CF you won’t be able to live a “normal” life, but what is normal really? I don’t know…but, I do know MY NORMAL, and that is something that I’ve focused on the last few years. Enjoy everything you can and enjoy it to the fullest, because you never know when that bad stretch is coming e.g. being in bed for days only to roll out to shower, hopefully eat something, and maybe grab few minutes of fresh air walking the dog. It doesn’t ever become easy, but humans can get used to most things, and sadly with CF those things tend to be uncomfortable, unpleasant, and extremely tedious. So, if you have CF or a disease of the kind, and the holidays seem to be more than the usual added pressure and stress don’t get discouraged…there are many of us out here we just tend to be a bit more “hidden” like our disease’s. Focus on the positive things (easier said than done, and takes a ton of practice), try to get into a “zone” to do your everyday routine: meds, bodily functions, and medical treatments. I find that I kind of go on autopilot about 20 minutes after I wake up when doing my treatments, meds, bathroom, etc. After all the rough stuff is done is my favorite time to shower, as it kind of allows you to start clean/fresh, and that is when I turn the autopilot off and try to be more in the moment. I find the best shower is a nice long shower, stretch the muscles, enjoy the “bliss” that a shower provides, hot until right at the end, then go for a few minutes of cold. Why? well, the experience I’ve had is it pumps you up a bit, wakes you up, and invigorates you, which is something you need after 2-5 hours of miserable morning crap (pun intended) lol. That is just my personal experience, but I’ve also read that a cold shower does do some great stuff for you physically and mentally. Then continue on with your day as planned, do what you need to do, but don’t forget to enjoy what you have the ability to enjoy, as it is very easy to allow the miserable thoughts and feelings to infiltrate your entire day, week, or month!  Please remember this is just my day to day, pick what works best for you…and don’t be afraid to try new things or tweak something to fit your particular needs. It is all about how you handle the hardest parts, while not forgetting to enjoy the good ones…Like Christmas, New Years, and the magic they bring to our lives.

So, to finish off this post which kind of took a few sidetracks, life is hard for everyone. Having a disease like CF makes that exponentially harder, and certain times of the year make it more noticeable because everyone else seems to be so happy, and joyful. It can almost be kind of aggravating, but that is letting the disease win, do not let it win! Thanksgiving, Christmas, and New Years are awesome, but don’t force them to feel awesome at the expense of how you feel, or how you choose to handle your daily struggles. Remember to keep your head up as certain things will likely discourage you, and can easily throw you off track. It takes time to master the art of not being able to anticipate anything in life except knowing you won’t feel well. Start the day and tackle as many hardships as you can, deal with them to the best of your ability, and then enjoy what is left to be enjoyed. It will always seem very bleak, and sometimes that is all it is. However, with patience (for yourself and others), tricks and shortcuts you pick up over the course of time or learn from an outside source, and remembering to keep your health as much on the front burner as possible life will slowly show you the way you can take all of the weird, and difficult little strands and weave them together into a life you can live…