The Return…

So, it has been a pretty long time since I’ve posted anything, I haven’t been doing too well health wise, but trying to keep my spirits up.

I had some really bad CF rundown, and then a week ago I had a broken tooth extracted…that’s 3 now in less than 2 years, ughhh!

But, I don’t want to let this blog go stagnant, however I have to admit it has been low on my list of priorities, especially being in pain and not being able to take pain medicine…I don’t know if I’ve mentioned this before, but I have had a problem with pain meds in the past, doctors will fuck you up if you’re not careful…

Anyways, I’m doing a good bit better now, still not totally healed up, but on my way for sure…hopefully!?

After my Mollie girl left us, I had a pretty rough couple of weeks, then an extraction and now I’m finally starting to come out the other side, but its a bitch to say the least.

However, I am a strong willed person and I wont let things defeat me anymore, besides killing me I’m not gonna stop. So, good…but, kind of morbid I know, lol…

Well, I just wanted to get back into the swing of things and get y’all updated on my situation…im not dead…lol! I hope everyone has had a good spring break, Easter, or anything you’ve been up to really…

And finally, I will be posting regularly again, and am actually thinking about upgrading my site subscription for some different benefits and more personalization, maybe starting to branch out a bit and see how it goes…so wish me luck!

Thanks for reading and hope everyone is doing well!

– Will

 

Watchathon Week!

So, it’s been a rough time for me recently, if you’ve read any of the recent posts…the few I have made…you will know I’ve been sick, my dog had to be taken in to be put down, and all kinds of horrible shit.

CF life is terrible in and of itself, but when you get even one thing extra that adds pressure, stress, angst, pain, anything really that isn’t easy to deal with it gets really f#cked up. Everything becomes exponentially harder.

So, there are certain times when it isn’t as hard because something (an outside variable) makes stuff easier to disregard.

Well, this week is watch-a-thon week on demand, with X-Finity…I live in an area where the cable company I have really has a monopoly on the area. It sucks sometimes, but there are benefits, and I am currently in the middle of one of those benefits: “watch-a-thon week,” it basically opens up the channels like Starz, Showtime, etc. you can either watch shows that you don’t have access to unless you pay for the particular channel, or you can watch the movies on demand on those channels. It’s pretty cool, it lasts about a week, and it allows you to catch up or watch stuff you wouldn’t get to unless you pay for those premium channels, which I don’t…lol.

Well, that’s what I have been and will be doing for the next couple of days, and I will be watching a bunch of movies, and maybe some cool TV shows I don’t know yet, i’ll figure it out when I run out of movies I want to watch, if that happens.

Right now I am watching a movie called “Freaks of Nature” it’s like a mix between “Can’t Hardly Wait, Final Destination, and Twilight/Walking Dead”…lol. Pretty funny, and a crazy vampire/alien/zombie/human integration movie…nice!

Anyways, hope all is well with everyone, and have a good week!

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.

 

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.

Feeling Powerless

It’s 1:15am and I’m unable to sleep, also I haven’t posted anything today…so, I wanted to get this out while it was fresh on my mind…

The past few days I have been feeling relatively good, and haven’t had too many unexpected issues…until tonight.

So, a few hours ago, after I had dinner I am sitting around on Twitter, and Facebook, etc. as well as watching some TV, American dad, one of my favorite show. When all of a sudden I got extremely sick to my stomach…”here we go” I thought to myself…as I made my way to the bathroom.

After about 30 minutes of throwing up, I took a quick rinse off in a hot shower, to bring myself back to life, but also to clean up and get ready to go lay down and relax my tensed up abdomen. As well as my insanely horrible headache…

As I am sitting in bed I am going through some emails, and some other projects I have been trying to put together lately…and it kind of hit me in a weird way that the impact I am having on making my health better is not what I want it to be, which made me start down the “dark thought path.” Which is one of the worst places a person with a terminal illness can go to psychologically, it is a dangerous rabbit hole.

Well, I couldn’t stop it and several things came to mind…

  1. I  want to be back to my old self again…super healthy and only sick on the rare occasion…is it possible?
  2. I also want to reach more people like myself, who maybe sitting up at night alone, scared, with thoughts racing to the darkest places a mind can take you.
  3. I have limited resources to accomplish (1 & 2)… so, how do I do it in any kind of expedited fashion? I don’t know…
  4. Life is extremely short for all people but, with a terminal illness any day could be my last, or could be the last good day I’ll ever have.

As you can see these are not things one wants to think about, especially when feeling sick physically already, and sitting up alone, at close to midnight.

So, I started to compile a list of things I want to do, something I have done many times before, but in a more “dreamy” fashion. This list was REAL, it was harsh, it was definitive. Tomorrow is the first day I am going to start attempting to conquer this list, and I know I cant do it alone, so one more time I am asking for help…

If you know ANYONE who has the ability to facilitate introductions to leaders in the business community, please leave a comment, and let me know. I am trying to leave something behind to the people like me, who may be able to benefit from the struggles I have and am going through. Maybe set up a foundation, or even some kind of social network dedicated to allowing people like myself to communicate with each other in REAL TIME..but, not just like a Twitter, or Facebook kind of thing, something a bit more open. A place where strangers can come on anonymously if that is what they desire, chat with someone for a little while, or a group of people, and then leave. No log in, no required email, just a “virtual coffee shop” so to speak, or maybe even closer to a virtual “bar/pub.”

I realize people always need help, and will always need help, and I can’t fix all of that…but, if I can create something that at the very least allows CFer’s or anyone with a terminal, or long-term illness to have someone to reach out to. Being that in times like the one I’m in right now, that would be an enormous burden off of my shoulder’s, I want to get that going ASAP. And if I can do that in a day, week, or month…I want to do it.

That is asking a lot, I know. But, I don’t have the luxury of waiting patiently anymore…and that hit me tonight like a ton of bricks, so I am going to start reaching out to everyone I know, and if you would like to be a part of this or know someone who can help, in any way, I would deeply appreciate it.

With that, as it is a lot, I will end this post…hopefully I can stir something up, because I AM going to get something going, and the more people I can get involved the better. This feeling of powerlessness is a horrible one, and I want to prevent other people from having this feeling consume them like it does me at times.

Goodnight, and thank you for reading…