The Plunge…this sucks!

Well, I’ve kind of been waiting for this to happen for a few days since I’ve been naturally feeling not terrible, and have been enjoying watching some really good basketball games…I’ve been elated, enjoying the natural high of life. But…waiting for the other shoe to drop.

It just hit me like a ton of bricks, as I am sitting here watching some game recaps, I feel that nasty pit of the stomach feeling start to churn, it is angst, dread, fear, loneliness, just discomfort on a deep psychological level. The other side of the effect of waiting for the other shoe to drop type feeling, well it has dropped. And it is ripping my stomach apart as I try to control it.

I literally just made a post probably less than an hour ago, and I wasn’t in this mood. I know all people experience this kind of thing, just maybe not in this amplified of an impact. Having Cystic Fibrosis I am used to dealing with discomfort both physically and mentally, and I have a pretty well developed sense of how it is impacting me and how I can keep it in check. Having said that, I also have NO control sometimes, and this is one of those times.

I am sitting here at 12:30 am, I’m alone, and uncomfortable…in a terrible way. These are the times I anticipate with fear, almost more than anything else. The feeling of dread fills my mind, and my stomach in trying to rip its way out of my body to find an escape.

I usually wouldn’t share this type of stuff, I wasn’t raised to complain, but I’m trying to be as real as possible and make this site/blog raw, real, and not sugar coated…I was raised well, and raised with the idea that you don’t complain unless you need to, “don’t cry wolf” I guess would be the best way to describe my discipline in this area. There are times I need help, physically, and even mentally…but, if I always say how crappy I feel I would be complaining almost constantly and more so when it gets bad, but this is one of those times. So,where I usually just suffer in silence as to not create stress and tension among the ones I love, I am using this as my outlet. Trying to share my pain in an attempt to understand it better myself, but also to show how much of an impact something like CF has one people aside from the physical affects.

Obviously, this will subside at some point…but I don’t know when. So, until then I will try to distract myself with meditation, video games, TV, anything to take my mind off of this for just enough time for it to fall to the back burner in my already scrambled brain. As I said I don’t usually share this stuff because it Is my shit to deal with, I am trying to be more open, and hopefully shed some light on what impact an invisible illness has on the person, like I said, aside from the physical impact.

So, with that I am off to distract myself, I apologize if this post seems to just be a long winded complaint. That wasn’t really my intention, but I think it was the outcome.

Bracket has held up…so far.

So, it’s March Madness and they call it that for a reason, a lot of strange occurrences happen…not actually strange, but different than what the “on paper” outlook says about how things will go…

Anyways, I filled out my bracket two nights ago I think, and as you’re filling it out you get little “hints” from the organization with which you fill out the bracket about who should win, or who has better odds of winning. However, if you’ve ever watched the NCAA tournament before you know you CANNOT bank on what is supposed to happen. The only way you can have a real chance and purposefully filling out a good bracket is to have followed the teams during regular season. You have to know who plays well, but not only that…who plays well under pressure, who plays well injured, who hits big time shots and makes big time plays. You have to know the ins and outs of particular teams, players, and even coaches to really have a good understanding of who will go places in the tournament.

Having said all that its still a crapshoot. You can follow every team all season and still blow your bracket in the first couple of games because that how March Madness goes! But, that’s also what makes it fun, entertaining, and exhilarating…

If you are a fan of college basketball I hope you’ve enjoyed these first couple of games, and enjoy the rest…I know I will!

 

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.

 

March Madness has begun!!

So, I think the official date is the 14th, but college basketball has taken over the TV…and I love it. It’s one of those things that gives me natural energy, and a “natural high.”

I’ve already gotten to watch like 5 games of matchups I really wanted to see…Duke beat UNC the other night…and right now I’m watching Kentucky v Alabama, and its a great game so far.

For the next couple of weeks I will have several basketball games a day that I WANT to watch and several others that I can watch if nothing else good is on. Some people get mad because their shows get overridden, but not me, lol…sorry not sorry.

Anyways, I’ve literally re-planned my whole daily schedule around this games and then Duke platys again tonight at 9pm…I think.

Hopefully, you had a good week, and are having a good weekend. If you have a basketball jones like I do, enjoy!

Dating with Cystic Fibrosis

As I have created this page, I get more people specifically looking for CF pages than anything else, it isn’t really something of a topic most people will stumble upon and read just to learn more, and that’s fine…I’ve accepted that.

However, I have had a few friends read this page, people who have either a friend or family member with CF or know someone with CF…it isn’t a large group, but there are those who do.

One common question I get as my CF becomes more prevalent in my life, and it shows itself more than it did when I was a younger man. How is it dating when you have Cystic Fibrosis?

So, here’s the answer I give them: Dating in general is a hard thing to do, especially in the times we live in where most people just want a quick hookup, as there are no less than 5 apps/sites dedicated specifically to that. But, having something like CF where if the person you are dating finds out and looks it up before you can explain what CF is like, they’ll probably be scared off. So, if you can make it to the first date, be honest…it is the best way to break that uncomfortable barrier. If the person you are dating comes and is curious explain what CF is, but don’t be graphic and morbid, ease them into life with Cystic Fibrosis. Allow them to see, you are just a person like anyone else, just so happens you have CF and have to take some pills, and do some breathing treatments. Here’s where it can get tricky…the first time that person sees you “sick” will tell you everything you need to know about dating them. If they are caring, concerned, and curious chances are they are a good person for you to keep dating, most people like that are genuinely good people. But, there are also the ones who will be fine, until they see you sick and it will scare, intimidate, freak them out, or maybe just not fit into their idea of what they want in life, which is fine, but totally on them. You control what you can and the right person will be the person you need them to be.

As far as everything else goes i.e. long-term relationship, living together, sex, marriage, etc. It is all do-able with the right care, planning, and most importantly the right person.

Interesting

It’s late Thursday evening, and I am finishing up on some stuff I had to do today, and I just signed onto my social media where I noticed a couple of comments, on some posts I have recently made.

The posts were nothing crazy, just observations on the political landscape, the irony of said landscape, and the hypocrisy with which so many people operate these days.

So in particular there was a post about health insurance, which if you have read any of my previous posts, you know I have Cystic Fibrosis, and have not been able to qualify, in any way, for decent/affordable coverage in several years.

However, strangely since Trump has become POTUS, I have received several phone calls, and even a positive response to some applications I sent in for assistance, and health insurance, where before I was basically just ignored, or immediately turned down.

But, like I said in the past few weeks, after my latest attempt to get some sort of coverage I was actually contacted by a few companies and even a representative who had been assigned my “case.”

So, I made the connection that maybe this administration has put a fire under the asses of some of these tit suckling government workers who care not ONE BIT about you as is obvious by the way they treat you when you call, or go in person to their department’s brick and mortar building.

Now, having recently signed on to my social media I am getting all kinds of weird responses to my comments, including but not limited to disbelief of my condition, distrust in my reason for applying for help, and even veiled threats towards me/ negative wishes about my health.

Sadly, I am kind of used to seeing this stuff, but have never been the grunt of said negativity…and its very disconcerting, but more so disappointing. I am the kind of person who doesn’t wish ill on anyone, even those with whom I disagree, but generally I wish everyone well, and hope that they don’t have the same kinds of issued just living their lives as I do, on a daily basis.

We live in a world where Rapper’s and “movie star’s” are put on an almost godly pedestal, setting them up in many young people’s eye as something to strive to be…and at the same time we as a society criticize people like Tim Tebow who are REAL role models in similar societal statuses (as far as money and fame go). It is just pathetic…and disheartening to watch people who are actually trying to make our country and the world a better place, get vilified. Meanwhile, the most narcissistic, hedonistic, and many times criminal figures in our society are basically given a free pass to do, say, and be poor excuses for role models, and generally not good people.

Anyways, I guess my point to this post is we should re-evaluate the way we categorize people in our society, and the way we portray them to our young impressionable minds. It is sad to think kids growing up would grow up thinking its ok to treat fellow American’s so badly, and not have it even be a problem. We should be treating each other with respect, even if we disagree politically, socially, culturally, or whatever.

If we just treated each other better, there wouldn’t be some much division, we would get much more accomplished because we could work together better, and we wouldn’t have so many people who feel ostracized for reason’s out of their hands, or based on something they had little control over.

This post is kind of all over the place, so sorry…rant over…lol. Hopefully everyone has a good rest of the week, and into the weekend as well.

 

 

Getting back into Jiu-Jitsu

So, I have been feeling up and down recently having both good stretches, and bad stretches…back and forth.

I have decided to start doing everything I can do to get my physical health back to where I would like it to be. And I’m not going to take no from my body for an answer…so I am going to go up and speak to my of jiu-jitsu coach and see about getting re-enrolled in some classes. And I’m excited, to say the least…

I have decided in an attempt to secure some of the stuff I’ve recently been discussion in my blog that this is the best course of action, to build myself up to appoint where I am a viable option to corporations.

Anyways, hopefully within the next few weeks, I will have some of this stuff hashed out and figured out totally!

I will keep you updated as I plan to bring you along on my journey!

Almost done…

I have been working really hard to get this page setup exactly how I want it to be and to function how I want it to work. So, its been a few days since I’ve made a blog post, but several days since I’ve blogged regularly…so I’m back…

I am doing pretty well considering the amount of stress I’ve been under, after this is over hopefully I will be able to get the rest of the stuff I want to do set up.

However, right now I am sitting here messing around on the site, but more so I am watching this new show called “Legion” it’s part of the X-men story, and its pretty badass, but it’s also pretty freaking crazy!

There are only 4 episodes so far,  and I’m on number 3 right now, and this is one of those shows that you sometimes have to watch an episode twice to figure out what the hell was going on, very Inception-ish/a beautiful mind….what’s real? What’s false? But, it makes it a lot of fun to watch, that’s for sure.

So that’s basically what I’ve been doing for the past couple of hours, lol…CF life for you. You spend all day and night working in and on a computer not getting much sleep. Then you catch up and recoup on rest, and stuff while binge watching shows on TV. I’m used to it so I can get everything set up to where I can be productive while just sitting around most of the time. I know kind of a catch 22…but its how I’ve always had to do things so nothing new to me!

Anyways, I wanted to also say I have moved the CF Life body hacks, and daily tips to their own drop down menu on the home-page so they’re easier to find, as I’m trying to make this while site easier to navigate in general.

So, that’s all I have for right now, I’m probably gonna go make some leftovers and watch some more cool TV shows, hope everyone has/had a good weekend. Thanks for reading!

Change in Progress!

I have been putting a lot of time and effort into making this page something besides a “blog page.” I want it to be interactive, to give us CFer’s, who sometimes have more time on our hands and time for our brains to go to dark places something to do. A place to come to just kill some time, or do something distracting. I am working on some very cool, or at least I hope that it is cool, stuff for this new site. Some interactive stuff, some story sharing, or maybe even real time chat, or discussion type setup.

I have been putting several hours a day not just into creating this new template, and design of my page, but trying to take it away form being just a blog. So, I hope you enjoy it, and it will be changing for probably a couple of weeks. When I am done though it should be pretty AWESOME!

I hope my ideas, design choices, and new direction of this is something y’all enjoy, and if you would share it with people you know so I can reach out to some other folks, who either have or know someone who has CF, I would really appreciate it.

I am worn out, as I have been looking at a computer screen for several hours a day at least for the past several days. So, please forgive the lack of new blog posts, and the “construction” of this new setup and design that I am implementing. Hopefully, when it is done, it will all be worth it. Goodnight, hope everyone has a great weekend.

New Site Layout!

So, I’ve been working on my blog and have somewhere around 30 posts, give or take a couple..

Recently I noticed I didn’t like the layout of my site, so I started doing some research and trying to find ways to transfer the info to another template, and then I saw how easy it was to do, and I did it.

It is still the same basic format, just much easier on the eye, in MY opinion, but I also did some research in terms of watching videos on YouTube, reading other blogs finding out what they like or don’t like, and what is visually pleasing.

I picked out a new template, fiddled with it for a few hours and BOOM, I have a new template, and reconstructed layout to my blog site! And I love it, hopefully others feel the same.

Anyways I am super tired tonight, as I’ve had a pretty rough day in terms of the Cystic Fibrosis symptoms…coughing a lot, sneezing a lot (more to do with seasonal allergies), really sick to my stomach for most of the day, but I  focused and got it done.

I am not finished and will probably be tinkering with it for a much longer period of time each day…lol. Good old OCD for you…

So, let me know what you think, leave a comment, share it with your friends…lets raise some awareness and help some people BREATHE! Have a goodnight, thanks for reading.