Back to normal “hacking” my health.

It’s about 3:30 pm and I’m sitting here having just finished up some work, don’t really have anything else that’s super pressing to do today so I’m going to blog a bit. I want to start this blog post out by asking a couple of questions…anybody who so desires can respond. It would be appreciated so maybe I can tailor posts to a certain request for knowledge, experiences, information, etc.

So, after the holidays are over everyone has those couple of weeks where you’re stuck in-between being in a holiday type mood, and moving on to get back to “normal” life. At least that’s where I’ve been and may even still be a bit…since I love this time of year so much I tend to drag is out as long as I can. Being that it’s over however I have been having some weird stress and anxiety the past several days, and I’m not too sure why…? I woke up a couple days ago and the CF crap had weaseled its way back into my main thought process. It sucks, but with that there comes a bit of an ability to view things from a distant perspective. Meaning even though it sucks I can kind of step back and review how I am doing before, during, and after the holidays, and why. I’ve been waking up at 6-7am again as opposed to being able to sleep comfortably until 9-10am, I don’t like it but it gets me back into my regular routine. If I had my way society in general wouldn’t get moving until 10-11am and go until later in the day, but that’s just my personal preference.

Here are some of the things I’ve re-instituted into my daily “body/health hacks” some may be helpful to anyone and others may only be applicable to people who deal with terminal illnesses like Cystic Fibrosis, diabetes, Crohn’s, etc…so, body/health hacks: when I first wake up I cough like crazy so I keep two drinks on my bedside table, 1 is a bottle of water(a must) and the second varies, sometimes its tea, sometimes its coffee, so basically something with minimal sugar or a sugar amount I can control. The reasoning being that a bit of caffeine will open up closed airways, so when you wake up in the morning all congested and clogged up

So, my day may look nothing like yours, but these things work…so try them out. It helps more than you think to be able to just pull a snack out of your bag that isn’t junk food. Or, to have a drink to hydrate with, and then one to sip on as the day goes, again something healthy as well as cheap being that it isn’t a $5.00 Starbucks, or a drink from the 7/11. All of these things not only help physically, but also mentally it’s comforting to know I won’t get hungry in traffic and have to pull over with low blood sugar. Finally, it saves me some money, as I don’t have to stop at junk food stores to refuel. These are just a couple of the many things I employ in an attempt to keep my body at a functioning level, keep myself from being hungry/thirsty, and without braking the bank, which I do just keeping up with Dr.’s appointments. All in all it is very helpful, and I can post more of these little tricks or “hack’s” as they are so often referred to in pop culture…They may seem inconsequential to most but when just doing your day is a rough task any little bit of relief here and there is a godsend, and enormous edge in keeping your health up to par while going through life and trying to keep on keeping on. Hopefully this helps one person figure out something they didn’t previously think of, or didn’t try before. That is the whole point of my page, and my blog, I want to be able to provide relief in situations where I didn’t have any help, or even information to go on. Enjoy the rest of your day!

New Year 2017

Well, it’s been a while since a posted anything on here. I tried my best to enjoy what parts of the Christmas – New Year’s holidays I could. I actually had a pretty good couple of days in a row, which is very unusual for me. So, on Christmas Eve we went to the Melting Pot, and it was delicious. On Christmas day we slept in a bit, then we woke up and had our morning coffee/tea as we each opened our “Santa Present” which was a stocking. As we sifted through the candy and little knickknack’s we enjoyed the view out over the cul-de-sac we live on. Then we dove into our presents and me, my mom, and my stepdad went in turn opening, we usually go smallest to largest, or go in the order of which presents we get handed…I don’t know why we do it like that, other than some gifts are prerequisites to other ones. It was very nice, relaxed, and enjoyable. As my “natural Christmas energy” flowed I soaked it up, and enjoyed every second of it. I’ve mentioned in the past (I think) that I get a pretty noticeable boost of naturally great energy that flows through me during certain holidays, and a couple other very specific times of the year. So we went through the day and the next enjoying great food, and yummy drinks. We had a good spread of Xmas morning food: orange juice, coffee, tea, Champagne for Mimosa’s, fruit, cheeses, eggs, smoked salmon, and a few other miscellaneous finger foods. That went into lunch, and for dinner we had a really good beef roast with potatoes, green beans, gravy, a really good bread with herb butter, and some sparkling grape juice (family tradition). The day of and the next couple were extremely enjoyable, we had a really nice couple of days, and I kind of forgot about how I felt with all the good vibes surging through me.

As the New Year rolled around the spirit of Christmas had kind of faded, and I was starting to feel crappy (my normal) again…but, I decided to kind of amp up a couple of my meds, and keep the spirit alive as long as I could. So for New Year’s eve we had a bunch of people surrounding our neighborhood doing fireworks, so after dinner we grabbed a couple of drink and went outside and set up on the porch to watch the show! It was awesome, we had a 360 degree fireworks show, when one direction died down we just rotated our chairs and kept on enjoying the show. After a couple of hours of hanging out watching fireworks, munching on leftovers, and sharing some drink and some laughs we went to bed. New Year’s day was nice also, we all slept in until like 10:30-11:00 then we woke up and my mom put out the breakfast snack’s, as well as getting everything else we had enjoyed the past couple of days out of the fridge, freezer, etc…warmed it all up and set it out. We went throughout the rest of the day grazing over the table of leftover delectable, finishing up the holiday drinks: eggnog, a bit of bourbon, champagne, juices, and sparkling grape. As we stuffed ourselves we also, watched a couple of really good movies, a couple that we watched  we showing on TV and the others were movies that we had received as presents. All in all it was very fun, we enjoyed each other’s company, did the whole visit/call family members, and did a good bit of laughing, which I absolutely love to do. It was an absolutely great several days!

Soaking up the Christmas spirit was something we all needed very much, especially because my family needed it. Having the CF makes all the year pretty rough, and sometimes we forget that our family, especially the ones closest to us, tend to carry a good bit of the burden when one of their own has a disease like CF or another lifelong illness, be it terminal or not. It’s kind of easy  to get caught up in your own “stuff” when you are sick all the time, but remembering that they are also suffering is something that needs to be recognized to allow everyone who needs an outlet for their feelings to let that stuff go for a while. Well, it was a success, we had a great week…and brought in the New Year together with laughs and love. I hope everyone’s holiday was great and that you enjoyed your family and friends. Here’s to a great 2017!!

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.

 

 

First blog post

I decided to start this blog for a couple of reasons…First, to shed some light on what some people would refer to a an invisible illness (i.e. an illness or disease people can’t see visibly). Second, to bring as much of the knowledge/experience I have collected over the years through enduring a lot of hard times to anyone dealing with health issues, or having some kind of life-long struggle. Finally, to reach out and share my story, somewhat for personal reasons, but also if I can help/connect with one person who feels like they’re out in the world alone, scared and uninformed then I will have accomplished what I set out to do.