Spread too thin…

Well, I have been trying to make a post a bit more often but like the title says I’ve spread myself I bit thin…but, in a good way.

I have been hitting the gym consistently, today I did chest, tri’s, and calves. Maybe ill post one of my workout routine’s soon. However, one of the things about Cystic Fibrosis is you have to pace yourself or you’ll burn out quickly. So, basically every other day I have to “rest,” which in CF terms means: hang out around the house, don’t do anything too active, eat and drink a lot…and sleep as much as possible to allow the body to recover.

I’m not gonna lie I can deal with not being able to breathe well, put on weight easily, or even taking 100 pills a day. What I absolutely hate is “resting!”

There are only so many thing you can do before you start to go a little stir crazy…and it gets difficult. So, I’ve been taking on a few new projects, trying to get my foot in the door in a couple of new situations…just for some change of pace.

And, also to try to acquire some new income streams. Since working a 9-5 is kinda out of the question for me, I have to be creative. Its a bit of a pain in the ass.\

But, recently having a few things going on simultaneously, trying to keep a steady workout routine, and taking care of my CF stuff I have a bit more on my plate than I usually do and I can feel it, and the pressure.

So, I guess that’s good problems to have…things can ALWAYS get worse…lol. As such I like to enjoy myself as much as I can when things are going “well.”

Anyway, hope everyone is having a good week. Its almost Wednesday so that’s cool…but, I appricaite you reading!

-p.s. I added a new body hack, and daily tip, the focus is working out, and nutrition based on health benefits…check them out!

Advertisements

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!

Damn!

Well, its been a while since I’ve made a post, been having a pretty hard time recently.

We had to take my dog to the vet the other day, she’s had cancer and had a tumor…we were given a diagnosis a year ago that she’d only be able to go for 2 months, we had her for an additional 14, and without any pain we were comfortable having her stay with us…as the vet put it “she doesn’t know she’s sick, so as long as she isn’t in pain, she’ll be fine.”

So, we brought her home started feeding her only home cooked food, and making sure she got lots of extra outside time and loving, well it paid off and I got to have my sweet girl around for a while longer…but, as I didn’t want to have her be in any pain at all, the second I realized she was having pain we took her into the vet, and they confirmed the suspicion, so we did the humane thing, and didn’t keep her around being in pain.

As I was saying goodbye and tears were streaming down my face and onto her greying hair, I thought about all the times I had cried into her fur and she always laid right there and allowed me to release my pain with no judgement, especially when I had no one else around. She was an angel…that’s for sure.

Saying goodbye was one of the hardest things ive ever done, but it was her time, I do miss her every second of everyday though, especially when she would be on my heels, and now she isn’t…im still having bouts of crying and missing her next to me.

In time I may get another dog, but not right now. Being a CF patient brings with it a lot of weird things regular people just won’t ever have to think about…I honestly thought I wouldn’t be here without her. Going through the shit I go through without her is miserable, and I have to remember to keep my head up where before she would bring a smile to my face.

I miss her…

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.

 

 

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.

Health Insurance

So, I’ve been excited that Obamacare is going to be replaced, as I haven’t had health insurance in several years.

Now if you talk to many Democrats they will tell you Obamacare gave access to healthcare for people who couldn’t get it otherwise…and that just isn’t true.

Here are the reasons why health insurance in America needs an overhaul:

  1. When I was younger I qualified for Medicaid based on my Cystic Fibrosis and my age, most of my doctor appointments were covered, aside from the ones my family could afford to pay, in those cases we paid upfront. It was an affordable price…
  2. After 18, I went on my parents insurance for a few years…but, when I turned 21 I stopped being on my parents health insurance. So, I just went without, however at the time it wasn’t a huge problem most Dr.’s would just charge me for the services rendered and not the “co-pay” costs which weren’t bad but recently have become outlandish.

And just for a bit of insight I take many medications…and just two of them are what I will tell you about. One if them is a pancreatic enzyme…and the first time I went to fill this medicine without Medicaid the cost of that medicine was $3900/month, the second was a liquid that went into a nebulizer…and that one costs around $12,000/month…I know absolutely nuts. Why, and who could afford that??

3. When Obama touted his Obamacare I thought “oh great i’ll be able to get coverage again.” I was sadly mistaken, as the quotes I got were absolutely outrageous. But, I was being told by the news that it would be affordable coverage regardless of preexisting conditions. Which was a lie…

4. Now, as recently as November I applied for federal assistance: Medicaid, SSI, disability,  etc. and I have repeatedly been turned down…for reasons that don’t make any sense. So, no reason really…”just deny and maybe he’ll stop asking.”

5. Then, looking at a fine of some sort for NOT being able to afford health insurance is insanity. So, even though it’s supposed to be accessible to all Americans, it isn’t because it is still outrageously priced, and they may not turn you down because of a preexisting condition, but it does make monthly premiums skyrocket which makes them unaffordable…and the copays are more expensive than just telling the Dr, pharmacy, etc. that you are going to pay cash.

I guess I don’t know the ins and outs like the insurance companies/government do, but I find it odd, people who imposed Obamacare are exempt from it, and people like me who have things like Cystic Fibrosis, haven’t been abe to afford insurance. So, we can’t afford it and are now being threatened with fines for not being able to afford it…it makes my mind spin, and my head hurt, it’s nonsense.

Hopefully Trump will be able to get something done so that I can obtain AFFORDABLE health care, since I have to spend the majority of my finances on just upkeep of my health. Not to mention being able to do other things like eat, and wear clothes, etc. you know those crazy “extras” lol…sorry, but if I don’t laugh i’ll cry, and then i’ll probably lose my damn mind.

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.

UFC fights!

Just sitting here watching UFC fights, just watched Paul Felder whoop Ricci down, and he’s a tough dude! I used to train Jiu-jitsu and hopefully am going to get back into it soon.

As I sit here thinking about what not having CF (Cystic Fibrosis) would be like, I envy these guys, even the ones who get smashed! I wish I could be in there…I miss training everyday. My health keeps declining a bit, and so these guys are who I live vicariously through.

Anyways, I always rewind live TV back as far as it goes…like 1.5 hours, so I can fast forward through the commercials. I know kind of impatient I am (don’t know why I just worded that like Yoda…lol)  I just don’t like waiting for the commercials to be over.

So, I’m a bit behind in the show as I’m about to watch Theadoreau vs Ferriera, and I’m got to keep my eyes on this fight. Hope everyone had a good weekend, and has a good upcoming week!

Routine Extraction

Wake up: 8:30 am (feeling pretty good today)

Make some tea and have an orange and a couple of doughnuts: 9:30 am (not having too much trouble today, must be one of the good ones.)

Take the dog for a walk and stretch/get some fresh air: 10:15 am-11:00 am (nice weather finally)

11:15 am – 2:00 pm: bathroom routine, and shower (extra long shower enjoying the hot water after a long walk)

2:15 pm: make some lunch, and watch a bit of TV (Tuna sandwich and chicken noodle soup, and this new show called “Taboo” which I must say is pretty cool, weird but cool)

4:00 pm: making some phone calls, handling my daily routine of household stuff, cleaning etc. (reveling in the fact that today isn’t really too rough)

5:00 pm: got to talk to my Dad for a good little while (something I don’t get to do too often)

Really having a pretty nice, and normal day…enjoying the weather and playing with my dog, as well as catching up on some stuff I’ve been putting off…can’t complain.

And then my luck rears it’s head and the routine turns to shit!…As I am eating a late afternoon snack I take a bite of seafood pasta, suddenly I feel it. I bite down on a piece of shell, and CRUNCH…one of my teeth breaks…son of a bitch! I run to the bathroom and start examining my mouth, rinsing with mouthwash and getting out my floss sticks to make sure everything is ok. It isn’t…I realize I have broken my back molar and a rather large piece of the side has come off. F@CK ME!! This is just my luck, as I am taking the nice day for granted I get a visit from reality…

So, with CF I have a serious vitamin deficiency, mainly ADEK. One of the thing’s I have come to accept about the Cystic Fibrosis is this: weak bones, weak joints, rapid aging of the body and it’s components. And, just as I am eating my snack it comes back onto me like a ton of bricks…I will be dealing with this kind of bullshit for the rest of my life.

Now, tomorrow when I wake up I will have to call the dentist, and be prepared to be told “you need an extraction” being that the last time I had a serious dental emergency that is what I needed. I am expecting to have a pretty crappy couple of week waiting for an appointment, and trying to figure out how I am going to pay for what I hope is a routine procedure, but due to the nature of CF and the poor health of my body in general, I am expecting the worst. “William you need an extraction of your back right molar, we don’t have any opening for a month, and your dental insurance doesn’t cover this kind of stuff, it will cost around $1500.00.”

You get used to dealing with problems on a regular basis with something like CF, and this is definitely one of the more jarring and miserable ones, as my body deteriorates at an expedited pace. So, here we go…ill find out what is going to come next tomorrow when I call my dentist. FML!

Dave Matthews Band

It’s almost 3 am, and I’m sitting here watching some basketball, listening to “Louisiana Bayou”…wide awake, and bored as hell.

I just went and checked out what the Dave concert coming to my city in May had left tickets-wise…I usually get lawn seat anyways so it shouldn’t be a problem. But, I don’t know how I am going to feel come 5/31…which sucks. Especially because I’d rather have a seat that doesn’t make me super sore afterwards…yay for CF…lol.

I’ve been to several of the concerts in the past ten years…maybe 3-4 and I love it, he’s one of my favorite live musicians by far…but, getting sicker as I am I don’t know if I can make it this year, and that bums me out.

If you’ve been following my blog at all you know I have Cystic Fibrosis, and that I’m trying some new avenues of approach in life, income, activities in general…and basically my approach to being sick all the time and only getting worse, as CF is a progressive degenerative disease.

I haven’t blogged in a few days because I’ve been going through some rough shit, all kinds of unexpected health stuff, family stuff, and just random things that when added on to the already heaping pile of shit on my plate, is like the straw the breaks the camel’s back. I know I complain a lot but I guess that is what this blog is for me…a way to share my pain with people without having to pay a therapist, or annoy my limited number of friends to the point that they want less to do with me than they already do. Its pretty lonely having a genetic disease that restricts your ability to participate in the lives of the people you’ve grown up with and call friends.

So, like I said I just got of Ticketmaster, and am thinking if I can get a family member to “birthday purchase” me some tickets I may go, but if not, I probably wont be able to…sad. I sound pretty f#cking pathetic tonight…I must say. Whatever though, like I said I use this as an outlet so I don’t go nuts keeping it all in.

I am still in the process of trying to find some sponsors or companies that want a CF patient as a brand ambassador, but so far…no luck. Which is ok, I didn’t expect it to happen fast, if it ever happens at all. But, damn…lol. I could use some help in a major way.

If you know anyone looking for a person to sponsor, or if you know a company looking to do some philanthropy, or even a store looking for a brand ambassador…please pass the information along to me, or give them my email: pmma85887@gmail.com. I would be grateful. Also, me and a comedian buddy are going to start doing a podcast, something like “CF kid and the Canuck” or “Laugh at my Sickness with me.” We haven’t started yet, so it’s still in developmental stages obviously, but again, any ad placement or capital would help move things along. And, like I’ve said before compensation will be met with advertising, and promotion…I’m trying to set up some partnerships! Keep me in mind…

Anyways, as I haven’t posted in a while I’ll quit my whining, and get back to the usual…here are my CF Life hack’s, and tip’s of the day:

CF Life tip of the day: Don’t neglect your physical appearance, I have been guilty of this frequently, not getting haircut’s, or wearing sweatpants out…keeping yourself looking good, even if you don’t feel good, can in and of itself boost your mood, and give you a mental edge. As well as dressing nice, it definitely makes you feel better about yourself, and boosts your self-image.

CF Life Body Hack # 5: Sleep with your body in a fixed position, using pillows, keep your head above your torso, this will keep mucus from draining into the back of your throat, which makes it much easier to breathe throughout the night, also, it doubles as keeping reflux from making its way to your esophagus as easily…which with something like CF can literally wake you in a panic thinking you’re having a heart attack…it’s incredibly beneficial. Try it!