Hitting the GYM!

So, I haven’t been posting as much recently, which wasn’t intentional…I had been feeling a bit crappy for a while.

However, lately I have been pretty busy and just haven’t had much free time. As I’ve been trying to create a positive snowball effect of things to improve my life a little bit.

I have been consistently hitting the gym..an working out with a trainer friend of mine. Gains son! Lol, anyway…I have been seeing some pretty decent results not in just physical appearance, which used to be the most important thing to me…wanted to look good when I took my shirt of, haha…but, also in actual applicable strength. Something that I know many CFer’s deal with when they go extended periods being stuck in bed, or being told by Dr.’s to “take it easy…”

It is very easy to develop a sedentary lifestyle when you have something like CF or anything that is chronic and debilitating, it becomes almost SOP to take is easy. It takes less to feel sick, especially when you don’t limit what you do, so putting limits on yourself is just almost a knee-jerk reaction.

So, I used to be pretty heavy into body building, I weighed like 160 and was pretty jacked especially because of my body frame, and the near 0% body fat, lol…CF does have some benefits, even if they are kind of shallow…I went a good long time away from the gym, but I had some muscle memory still and the first couple workouts were surprisingly beneficial. Then you hit that “wall” where you really have to push through because you aren’t seeing the same instant results you were seeing for those first couple of workouts back.

Now, it had been about 1.5 months and I’ve been pretty consistent, I’m seeing some new muscle definition after breaking through that wall of resistance you get for the first but of time you start lifting again…its kind of a strange feeling to describe, but you feel “off, slow, weak, out of place, unsure of yourself, or even unsure of your workout routine…”

It took a few weeks for that to go away but, since I’ve experienced it before I knew I had to keep at it and let myself feel the frustration, so that I could feel when I passed that wall…and sure enough I did, I started being able to lift more, seeing more perpetual pumps, and generally having more energy and strength during the days.

It goes without saying that the physically visual benefits of working out are what a lot of people go for, I used to be one of them…but, as I’ve seen more CF related problems come into my life the impact that isn’t outwardly visible is WAY more of what I’m going for…useful, applicable strength, and generally feeling better…that’s what I hit the gym hard for. Don’t get my wrong though, it’s a great feeling to go into the locker room post workout, pull off your shirt, and see he visual improvements of killing a workout.

Well, this is a pretty long post, but I wanted to jump back in with both feet. I am going to go back to doing a couple of posts a week, as well as some new body/CF life hacks…and now I have a few more that I had forgotten over the years.

So, if you have something life CF or any chronic illness that greatly restricts what you can/can’t do sometimes the benefits of pushing that “I don’t feel good, I’m just gonna take it easy” feeling out of the way, sucking It up, blasting a few albuterol shots, and just getting out and doing what you need/want to do outweighs the consequences you will end up facing. For me the biggest one is actually psychological. And there’s an incredible benefit and feeling to know I could have stayed home but I sucked it up and did my thing anyway.

Hope everyone has a good rest of the week, thanks for taking the time to read!

–  Will

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another late night, or early morning

Well, its almost 4:45am and I’m still awake. I dozed for a bit but my sleeping schedule has been extremely strange of late. I sleep a few hours and am awake for several, rinse and repeat…it sucks.

I have been in a very peculiar situation for the past couple of years, in that I have a better control and understanding of what my life with CF is going to look like as I get older, but it also changes slightly everyday, no days are completely predictable of even able to be planned for and it is pressuring me to figure out how to make this situation work to my benefit, or at least be able to benefit while dealing with my situation. Which is very damn hard, and not pleasant at all!

I just wrote my first blog for a few months a couple of days ago, and got a decent number of people reading It as well as a few new followers which is always a nice surprise. But, to be honest, I realize everyday more and more how much different my life is going to be than any kind of “normal” I had ever pictured as a kid and it is a bummer to say the least.

The only options I really have are “outside the box” type things, since regular places of employment either can’t accommodate my schedule, or I accidentally cough during the interview, lol…in which case I get extremely strange, albeit concerned looks, followed by: “are you ok?” or “do you cough like that all the time?” at which point I have to explain in detail what Cystic Fibrosis is, and that is isn’t contagious…and then the obligatory “thank you for coming in, we’ll let you know…” Which never happens oddly enough. I get it…I sound like someone who has been smoking since they were 2 and is probably gonna keel over the second I stand up out of the chair, haha.

Anyway, enough ranting for one day.

Ill be getting back to my daily life/body hacks posts soon, I actually have quite a few stocked up, and hopefully the tone will be a little more upbeat. So, thank you for reading and please know I welcome any questions or comments, or even suggestion…about anything. Hope everyone has a great rest of the week! Appreciate you stopping by…

-Will

It’s Been a While…

So, I haven’t posted anything to my site in a while, and sadly it was unable to be avoided. That’s one of the shittiest parts about CF if you get sick or rundown, there’s no toughing through it, you just have to endure…until its run its course.

Well, for me the past several months have absolutely SUCKED. I have had one problem after another, and rundown at its worst. So, I’ve been biding my time, and recovering as best I could.

While I couldn’t really do anything physical or even much of anything, I have been thinking about EVERYTHING a lot…and I think that’s one of the things about CF that’s strange. I’ve been told many times over my life that I have an “old soul.” And I’m guessing most CFer’s have as well. I think it’s a given when you have so much time to contemplate EVERYTHING. It forces you to “age, or grow up” faster than the average person.

Throughout my while life I’ve had older friends, I’ve dated people who are usually older than I am. And not purposefully…but, more out of a desire to have someone I can relate to better, they just so happen to be older.

So, being that the last few months have been difficult, I’ve been trying to figure out a way to accommodate life around being sick, and its not easy. I have however discovered a few things that may make it easier as I get older, if I get “older.” (not trying to be morbid, just realistic).

The Best way I can describe what I’ve been thinking about is simplicity, I need to develop my life around a simple set of needs, wants, belongings, activities, etc..

So, I have decided I want to look into the “Tiny House” movement, and find a way to work in some sort of field where I can do most of my work from home, it will probably be the only way I keep a semi-normal life…

Anyway, I have been sleeping very little and am trying to get this post up as a re-entrance into my posting schedule, as I’ve been out of the loop for so long now.

For that I do apologize, I wish it wasn’t this way, but it is…for now at least. So, to those who have read and posted in my absence I appreciate you greatly, and any new viewers I thank you for taking the time. it means a lot to me to be able to reach even the small number that I do.

Hopefully everyone has had a good summer, and enjoys the season change as much as I do…but, for now, have a good rest of the week and I’ll be posting more frequently now, hope you enjoy. Thanks again for stopping by!

Fellow CFer’s…breathe strong! And stay healthy!

Love the sound of rain…

I haven’t been posting as much which is going to change shortly, as my health comes back around after the changing of the seasons that happens to screw me every year almost like clockwork…I am going to start getting my shit together and doing what I need to do.

However, I have learned over the years what “pushing it” can do and I’m not gonna be stupid anymore…so, I’m taking it slowly…but, expect more like a post a day or at least a couple a week coming up.

So, right now I just got done showering, I’ve been super busy the last couple of days trying to catch up on stuff after a surgery, and general CF stuff, as well as Spring cleaning, and all kinds of other stuff going on…we’ll just say my schedule is jacked the hell up.

But, back to my topic….rain. I’m sitting here listening to music and I have now turned it off, so I can listen to the rain, I love the rain…it relaxes, de-stresses, and allows for a “white noise” type of sound that can be used to enhance an already relaxing task like meditation.

So I am about to mediate and I am loving that its raining because now I don’t need any Zen music to play, I have the rain…lol.

I guess this was kind of a weird all over the place post…it is kind of my brushing the cobwebs off post. Getting my typing skills back down and used to being used on a daily basis for something other than mundane tasks.

Well, I am done rambling…lol. Hopefully everyone has a great weekend.

Stay Positive

So, lately I’ve been having a rough time both physically with the Cystic Fibrosis, and also a little bit mentally.

Physically, I’ve been having a rough time with the allergy season, It has sapped my energy, and made my face itchy, watery, and red…lol…it sucks…

Mentally, I’m having a bit of trouble, I’m alone a lot and I’m struggling to figure out what to do with my downtime, especially when I don’t have energy to do shit…

Making yourself do things when you don’t feel good is one thing, but when you feel extra shitty, its damn near impossible, and when moving is taxing it takes it to a whole new level.

I see and hear about what people are doing and it bums me out…I try my hardest to stay positive, which is very hard to do, and 5 years ago I would’ve had a serious breakdown by now, probably gone on a bender and paid for it for several months afterwards. Now, I have gotten my shit together since then, but mentally it is never going to be easy to go through life with CF.

I am always going to have to be strong mentally, not being rock solid will lead to my demise, and not metaphorically, but literally…it definitely takes a toll on you knowing things will NEVER get easier, in fact they’ll only get harder.

It is a mind f#ck and then some…but, I am strong, and I will stay positive, and I will make it…

I have made the resolve of my inner strength being solid, I have an iron will, and it cant be broken. Maybe temporarily damaged, but nothing will ever break me totally again, ever. To tell the truth knowing that is the only thing that keeps me going…is that I wont break, life will have to get rid of me to break me, and even then I hope to leave behind a legacy that outlasts my time here physically.

With that I’m gonna go listen to some rap, and get in the mood to dominate when I wake up tomorrow!! Do what you gotta do…

 

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…

High and Low

I just recently got over a pretty bad bout of CF rundown, and I noticed something that I’ve thought about a lot over the past several years. I have a lot of variance between high’s and low’s in my life. So much so that I’m used to it to the point where its just normal to me. I know everyone gets used to their life as “normal” and I guess that’s part of my point, it’s strange what we can become used to…

I know people who are used to drinking everyday until they pass out, I know people who don’t drink at all and only do hard drugs, I also know people who have had 3 kids since high school, and all of them are used to their lives. It’s just their normal, and that’s fine, no judgment here…I’m not a judgmental person. But, it does make you think about what things in your life are just your normal and how easily you can get used to that stuff.

I have been “sick” since I was 3, when I was diagnosed with Cystic Fibrosis. Everyday since then I have taken 20-40 pills, done several breathing treatments, and had very specific dietary restrictions, and requirements…depending on my current health situation that stuff can vary and fluctuate. But, I see how other people live and they don’t have to do this stuff, when I noticed the difference at a young age I realized my normal was different but didn’t really have to think about that as an indefinite life path until around the beginning of highschool. That’s when it started to affect how I thought about things and how I approached things. Then college rolled around and I tried to push that stuff to the back of my mind, and “hide” my CF with more medication, and things that wouldn’t be considered medicine, but more “self-medication.”

As the time in college passed I slowly became a little more aware of how different my life was going to end up as compared to my friends, classmates, and fraternity brother’s. I realized they could whenever they chose change their life path and do something different, but I was always going to have CF, nothing I could do would change that.

Now, I’m pushing 30…and I sit up at night and wonder what would be my life if I didn’t have CF, what would I be doing and where would I be right now? Its a question that really messes with me sometimes, other times I handle it well. I’m sometimes referred to as a morbid person, but I’m not really, I just have had to come to terms with death from a young age. Which allows me not only to look at things differently, but look at life itself in a way that most people don’t get to ever. I sometimes find myself classifying it as a blessing but other times I classify it as a curse. I definitely have an “old soul” as people so often say, but people don’t realize its been aged more by my life and health circumstances until they really get to know me.

Anyways, I’ve been in a pretty bad low for the past several weeks, maybe a bit longer, and can tell I am coming out of it, but I’m still in it enough to have the vantage point that kind of messes with my head. I don’t want to be sick…it sucks. I don’t want to have all of this extra shit to do all of the time, but I do, and it will never change. I just have to deal with it the best I can and so that is what I will do. So, having said that I realize why peoples normal is different, but I envy those who can change their normal…because I can’t…and I will never be able to.

CF Rundown (Cystic Fibrosis)

Here we are again, it’s 3:15 in the morning and I’m up, just had a pretty bad coughing spasm, and have been feeling real crappy. One of the things that most people don’t know about CF unless you have it, or have experienced it first-hand, is called CF rundown. It’s pretty self explanatory…so every so often we CFer’s get rundown from the constant state of being sick. From all of the coughing, the malnutrition, the over worked and underutilized muscles. All of this comes together in this horrible set of symptoms that is referred to as CF rundown.

Basically, it requires that we slow down, amp up the meds, sleep and eat as much as possible, and rest in-between. I know it seems like its an overkill of rest and refraining from activity and that true, it is. But, that’s the only way to get rid of this. Relax, eat, drink as much fluid as possible, don’t strain to do things, and don’t force yourself into activities that aren’t absolutely necessary.

The shitty part of rundown is there is no kind of way to tell how long it will last. It can last a couple of days, or a couple of months, that’s the part that really does a mind job on you, waking up everyday knowing you are going to have x,y,z problems is one thing. But, then adding on being super tired, feeling hot and cold simultaneously, and not being able to do the already paired down set of activities we have in our lives really is a bitch.

I remember back in college, when I got this I’d pop into the health center, get some antibiotics and some pain killers and be back at it, but when you have several months where you show up with symptom’s, and keep getting prescribed things like pain meds, it can cause real problems: physical dependence or even addiction, but that’s a whole different can of worms for another post. So, back to the health center, their job is to get you back into class asap without endangering other students health…so, the combo of antibiotics to kill infection, and pain meds to make the hectic life of a college student who isn’t feeling well manageable is really one of the best balances of safety and pushing it slightly. And 95% of the time that was all that was required. Mind you this was back in college, my health was in general better, and I wasn’t pushing 30.

Fast forward 10+ years, and here I am, its 330 am and I don’t have the ability to take pain meds to be able to stop coughing and fall asleep, I don’t have antibiotics right now, and since I frequently am on a set of antibiotics for a plethora of other reasons, the less I can be taking them the better.

So, things like rundown get dealt with by: eating more, drinking lots of fluids, sleeping as much as possible, taking extra ibuprofen, using showers to keep the shivers or sweats at bay, getting more fresh air than just the normal daily routine would involve, amping up the treatments, and any other little tricks that don’t involve adding a bunch of unnecessary meds onto an already pile of pills we consume in general, on a regular day.

It’s kind of funny with CF you learn little things over the years, I probably know more about meds than most of the doctors I see, and especially meds I have taken before, you have to. Also, how they interact with my body in particular. Every time I get prescribed something, before I will even consider putting it in my body, I do an insane amount of research, and find out everything I can about it, factual and anecdotal…including other people’s experience with said medicine, the side effects listed on the label, its interaction with certain foods or other meds, all of that comes into play. Then I will take it, but if a few days in I realize the pros don’t outweigh the cons I stop taking it, now this doesn’t include things like antibiotics because it’s not healthy to start antibiotics and then stop them. As, your body will start to build up a resistance to that kind of medicine, and since we need it to work as best it can we can’t afford to give it an edge by already having a bit of resistance to the strain of infection it’s trying to fight. It’s a very thin line you have to walk, and it is a delicate balance of knowledge, trust in the people around you, and knowing your body extremely well.

Dealing with Cystic Fibrosis, or other terminal, or even just long-term illnesses is a very volatile situation, it requires a lot of patience, and a strong positive mental outlook. If you don’t learn to develop those qualities you are really in for some serious battles both physically, but maybe even more so psychologically. It can do a number on the toughest of people and it is a fickle bitch, please excuse the language, as I’m pretty fed up…lol…ahhh! So, once again hopefully this gives you a bit of insight into CF, and a small look into the life, thoughts, and experiences of someone who fights daily just to breathe.

I appreciate you taking the time to read this, and if you know someone struggling reach out to them, it’s almost 4am and id give anything to have someone to talk to right now, but everyone I know is asleep. Having someone extend an olive branch to a person in my situation makes so much difference, it’s kind of unexplainable, at least in the vocabulary I know.

Anyways, that’s all I can think of right now, and I don’t feel like writing anymore, but hopefully something good is on TV. So…with that…goodnight!

TV/Movie Binge

This past weekend, I was going through my cable box movies, and sometimes for a day here or there, or even a weekend I notice that the “premium channels” HBO, ShowTime, Cinemax, etc. are open. Now, I watch a good bit of TV, but I’ve been trying to consciously reduce the amount of time I spend bingeing TV or movies, with CF that’s easier to say than do though.

When you’re laying up in bed after being in the bathroom for several hours, or you haven’t been able to keep food down because you’re coughing so much, TV is one of the easier ways to “escape.” Therefore, it becomes almost like a friend, you desire good TV and are mad when nothing is on or your cable provider is giving you a hard time.

Like I said though I’m kind of a frequent binge watcher, I can literally watch 2,3 movies in a row or kill an entire season of a show in 1 day and 1 night. So, it’s one of those things that is kind of like social media in that its annoying sometimes and doesn’t always go the way you would like it to, but its really nice having it when you need it.

Recently I was scrolling through my on demand options and noticed that all the premium channels were open, so I jumped right in…I watched several great movies, ones that I’ve been wanting to see but didn’t want to buy, or forgot about until I saw their title again. I watched “Legend” with Tom Hardy, AMAZING movie, right up my alley. I also watched the new “Fantastic 4,” which I found to be kind of boring and stale, especially with the cast they had available to them, it was just scripted weird and predictable. Then I watched the “Imitation Game” which I’ve seen before and is one of my favorite movies, but more so because Benedict Cumberbatch is a bad ass actor. I like this whole wave of European 25-40 year old actors that have taken over the movie scene in the past 10 or so years: Tom Hardy, Benedict Cumberbatch, Christian Bale, Gerard Butler, Daniel Craig, etc. After I had a chance to search through what was available, I also watched “Triple 9,” which was a little bit of a letdown, and not very well cut together. Finally, I watched “Burnt” with Bradley Cooper, and that wasn’t what I expected, but in a good way. It was super intense, but very good and I’m a fan of the guy from “the American’s” on FX who was basically his nemesis, or rival chef.

All in all I had a couple of days there where I was just zoned into the TV and being able to escape like that for someone like me with Cystic Fibrosis, or any terminal illness where time can almost stand still while you feel like shit, but fly by on the days when you are feeling ok, or even good is an absolutely amazing feeling Being that most of the time any escape is just a less of two evils type of thing i.e. if my stomach isn’t feeling so great today I won’t notice as vividly the ability to not be able to eat, or that I’m coughing up a bunch of nastiness. And on the flipside, if my breathing is raspy and I cant get a full breath, the last thing on my mind is how my stomach feels even though it doesn’t feel good, my preoccupation with my breathing takes the focus away from one and puts it on the other.

Funny as it is though sometimes neither matters, and I cant breath, I’m stuck in the bathroom , I’m sore and achy, I’m coughing up a lung, and bleeding out every orifice of my dysfunctional body. Those days are my “hell,” the other days are my normal, and as I get older the day that seem like hell are steadily becoming my normal and what I now consider “normal” are becoming the good ones…LOL it sucks, hands down.

So, with that being as much as I can get out of my fogged out brain today, I will say good afternoon, and hopefully everyone has a good rest of the week. Follow me on Twitter @William85887, and pass this blog along to someone you know whos going though a  hard time, maybe it will allow them to forget about their bullshit, by focusing on mine for a bit. I appreciate any who have stopped to check this site out, it means a lot to me. Feel free to message me on here or Twitter, with any questions, comments, advice, etc. I’m always open to meeting new people and hearing new, stories, ideas, or POV’s.

CF Life tip of the day: Don’t let your anger or frustration with your situation dictate how you treat people, always be kind, and if you feel like you’re going to “blow up” go close yourself in a room take 5-10 deep breaths, and try to think about the positive interaction you have had with that person. Not blowing up on someone when you don’t really mean to direct anger at them is a great feeling, and after a couple of times of harnessing in your aggression or negative feeling of any kind, it will become easier, and each time it feels a bit more satisfying.

CF Life Body Hack # 6: If you have to go somewhere and you don’t want to be coughing the whole time, which draws all kinds of weird looks, and unwanted attention, buy a pack of the most “natural” cough drops you can find. Take a few with you, and when you’re going to be around people pop one in your mouth and moisten it, but don’t keep sucking on it Then, tuck it back next to your jaw where you jaw meets your ear in between your gum and teeth. Now don’t do this all the time as stopping the natural reaction of your body coughing is not a good thing. But, if you need a hour here and there where you aren’t coughing up a lung or don’t want puke in front of a bunch of strangers this is a very good little trick.