Mundane Monday

Well, it’s Monday again…no more weekend relaxation for five more days. I like everyone enjoy the weekend, and especially because it allows me to reduce the amount of time management I have to do in relation to my Cystic Fibrosis treatment, timetables, diet, etc. I can relax a bit on the weekends, and do things in a more slow paced fashion.

So, when the weekend comes around I start to get less stressed in general, and the reverse happens when the new week begins. I start to get stressed out, usually late Sunday, but sometimes not until Monday. Moreover, it always focuses around how I anticipate I am going to feel, and what I am going to have to do to compensate.

I’ve reached a point in my life where most of what I do is routine, and I’m used to it…it’s just my life. But, there are those few things that pop in and out of my routine, that throw a wrench into the gears. Some things become more pressing, some become less…creating a situation where I have to prioritize needs, instead of wants. In prioritizing needs things become extremely convoluted and, unless you’ve experienced it in such a defined way it is almost impossible to explain in a way which the average person could warp their head around.

You may be thinking to yourself I have had to prioritize needs before, and before you start assuming that I’m just making a mountain out of a molehill i’ll explain further. When I say prioritizing needs I don’t mean deciding between needing to get new shoes, or a new belt…or  deciding between needing to get a new piece of furniture or a new TV…or even something more personal like deciding between needing to fulfill a task given to you at work, or one given to you by a family member or close friend.

No, when I say prioritizing needs I mean deciding between needing to go to a Dr. appointment, or getting nutritional supplements…or deicing between refilling a prescription, or making sure you have enough food for the week. Maybe one of the worst of all deciding between what health information to share with family or friends, and what to keep to yourself…for fear of creating more stress or angst among those you love.

There are so many problems that we as CFer’s, anyone with a terminal, or lifelong illness face…some of them are easily adaptable, and some are so disconcerting that we would rather keep them bottled up than share, and have the possibility of allowing those problems to affect the ones we cherish. That is one of the harder parts of CF, it isn’t the coughing up blood, or aching all over, or even being stuck in the bathroom all day. It is watching those around you and feeling their pain as they look on helplessly. It is deciding between several things you have to have, and choosing between the MOST pressing of the issues on your plate to focus on. Making those choices of which need is more important, deciding what issues to keep to yourself, or even trying to shield the ones you love from your spilled over problems can sometimes be more taxing than any of the physical symptoms combined.

I guess that is the kind of problems I anticipate about the new week…what will pop up that I have to set other problems aside to focus on now? How will I approach the unapproachable amount of shit on my plate? And, how will I protect my loved ones from feeling, or even seeing my pain? They are questions I have yet to find answers to and I don’t think I ever will…

So, until I do figure out how to be “Superman” I will continue to do my best to put on a smile, move forward with my head up, but make sure I keep my chin down to avoid the unavoidable blows life throws at me (little martial arts pun). I will take things in stride, and try to keep my cool in all the shitty situations I am faced with, because that is what I have to do to keep my sanity, and to make sure the problems I have don’t become the problems of everyone around me, admittedly this doesn’t always work, but I will try regardless. I will smile, and laugh no matter how much of a terrible day I’ve had, and how badly I feel, because that’s all I have at times…is my inner strength, my will, and my ability to deal with the pain all day, but still smile.

 

Jammin Out!

Not too much is better than catching an old song you haven’t heard in a while…that nostalgic feel comes rolling in almost pulling you back into that time totally.

I have been trying to add some different stuff to my blog to reach a wider variety of readers, pull them in hopefully then they’ll see my other stuff, and start following my site or Twitter, etc. So, today I’m sitting here going through old Facebook posts, looking at old pictures, and jamming out to tunes back from college days, and there isn’t much of a better feeling than getting into that groove. I love it!

I had a rough couple of days there with the CF, but am feeling a bit better today, and in a bit I’ll have to go run some errands. Catch up on the pile of shit on my overloaded plate, and try to taper back on the overflow of procrastinated chores of daily life with or without CF…but, I revel in these days, the days that allow me to look back at the previous and realize I do have GOOD days, and they aren’t all BAD…it’s hard to pull yourself out of the moment when a day is bad or when stuff isn’t going your way. However, when those good ones roll around it makes you appreciate them that much more. So, if you’re having a bad day, week, month…just try to keep your head up and press on. Hopefully at some point it will ease up and allow you to enjoy the good, but appreciate the bad for allowing your to notice the good. And, with that I am going to go try to knock out some of these errands before the other shoe drops…lol. Hope everyone had/has a good day!

CF Life tip of the day: pick up a pack of sterile rubber gloves next time you are at the pharmacy…put a couple in baggies and keep some in your car, your favorite jacket, etc. The next time you have to pump gas, or use a public restroom, slip the gloves on and cut down on the chance that you’ll get some kind of nasty bacteria, or germs from stuff. Especially because people are so ignorant about good hygiene. It’s a huge stress reliever when you need to do something and there the gloves are…less worry!

CF Life Body Hack # 3: Feeling tired, or just out of it, having been sick the previous day? Go get a hot shave from a male hair salon. They will hot towel your face, head, and neck, use a straight razor with all the accoutrements of the trade…it is amazing how much a hot straight razor shave will improve your mood. Also, good grooming habits tend to make you feel better anytime. Enjoy!

Your Weekend Plans…?

TGIF!! It’s Friday afternoon, and I love the feeling this day brings…it’s like a small holiday once a week, I’m weird I know, lol I’m glad I have the ability to laugh at myself though. So, yesterday I took a huge step outside of my comfort zone, and I posted a video on YouTube and blogged with a link to said video. Now I have 12 views, and a couple of new followers! I have to admit it scared me to put myself out there like that, but I did it, and am glad I did. As for me I’m going to start today, and use my weekend time to get a little more versed in the social media stuff I’ve been a little behind on. I’m going to update my Twitter, as it has been stagnant since its inception. I am probably going to look into Instagram, Pinterest, Tumblr, etc. to see what fits with my desired platform blueprints. Also, since my first video was kind of raw, and not very professional I am going to look into ways to better my recording process, and I think I will probably need a new camera as the one on my computer doesn’t seem to be very decent. If I had the money I’d just go right now and buy one, but ill have to figure something else out until I can swing that. I am super excited because I really feel like this is going to allow me to do what I want to do, and that is help people who feel like they’re alone, with nowhere to turn. It’s hard to put yourself out there not knowing what will become of the vulnerability you show, but so far it’s been worth it!!

Anyways, that is what I intend to do with my weekend, what about you? What are your plans? Going to a movie, party, or yummy restaurant…leave a comment and let me know. Also, I am going to do a social “mixer” at some point in the near future. I am not exactly sure how I am going to facilitate and accomplish this. However, I’ve got a couple ideas that will hopefully allow people to come together (probably virtually) and share some ideas and stories in real time. I will be trying out several new things on my site, blog, and YouTube channel so keep an eye out. Any ideas or suggestions are welcomed. Hopefully everyone had an ok week, but are ready to have a great weekend! Thanks for stopping by, it’s always very much appreciated.

CF Life tip of the day: Instead of using expensive box tissues, buy some cheap but soft rolls of toilet paper to keep near where you spend the majority of your time e.g. bed, car, desk, etc. That way you have something to cough into instead of your hand, tissues for your nose, and even a “napkin” in a pinch.

CF Life Body Hack # 1: Getting sore, uncomfortable, bored, or just not in a great mood? Go to an outside area where you can get some fresh air, give your entire body a good stretch. Now, starting at your feet flex then relax your muscles progressively moving upward all the way to your forehead, make sure your breathing is controlled and steady. You should notice immediate improvement in your mood, as well as physically being more comfortable.

 

Affording Cystic Fibrosis

It’s about 4pm on Thursday, and I’m sitting here trying to figure out what to do with myself…I’m having one of those days, CF is particularly rough but some days are much worse than others. Today is one of those days, I woke up hacking, and haven’t been able to catch my breath since. So, in trying to distract myself I was calculating some of my finances for the past couple of months, and months to come. I’ve figured out I’m basically f#cked, and it’s hitting me pretty hard. Strangely I don’t qualify for certain health insurance or “aid” programs, literally none of them. I applied in September the last time and got a prompt letter back denying any financial help. I’m super frustrated because CF is an invisible illness, and it’s recognition is sparse. Anyways, as of now I’m only a small amount behind, and thinking of every possible way I can to try to catch up but I’m definitely “behind the 8-ball.” Since a few years ago it’s been a game of cat and mouse trying to get these government agencies who are supposed to be there to help people like me to even respond to my requests for further information on denial of aid. But, if I keep this train of thought it is going to ruin my whole day, so I’m going to quit my complaining now, and try to do something positive to keep my mind occupied.

Hope everyone is having a bit of a better day than I am, thank goodness the weekend is almost here…ahhh.

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!

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…