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!

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.

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.

Beard Trim Bound

It’s almost 2:20am and I’m still up and I’m pissed! I have been having a great f@cking day, now I woke up this morning feeling about the same as usual…but around 11:30am I got a boost of energy so I decided “hey I just got some new glasses the other day, so lets go get a hot shave and beard trim” so I get in the shower get my self going grab a couple boosts and I’m out the door.

I called ahead to the barbershop, Friends Barbershop up in the Johns Creek area, they told me to come one in they could get to me shortly. So I get up there, I was gonna have to wait for a bit, so I grabbed a drink and a magazine and waited for my turn in the chair.

Not too long and I was in the chair getting the barbers cape thrown over me, so I told them what I wanted and they went to work, cleaned up my beard, trimmed and straight razor complete! I’m paying and out the door, as I get out to the car my phone starts having a stroke, lol…then dead. Its done for. Luckily I’m right near the phone store.

So, I zip into Verizon and tell them what happened. they’re surprised the phone I had lasted me this long, apparently life span of smart phones is around 2 years…I’ve had my droid for almost 5…what can I say I have always taken good care of my things…part of the habitual OCD that comes with being a CFer. So, I plug it up at the store so they can see what’s wrong with it, and that it wasn’t something I did. Just wear and tear, so I look around for a bit, mind you I’m still a little behind on the whole tech, social media, phones, all that mess world. I just have many other things that come first and stuff like that is secondary or more like vigenary (20th).  “And for the record the progression is: 1st = primary, 2nd = secondary, 3rd = tertiary, 4th = quaternary, 5th = quinary, 6th = senary, 7th = septenary, 8th = octonary, 9th = nonary, 10th = denary, 12th = duodenary and 20th = vigenary.” -oxford dictionary.

Anyways..lol…so pick out a new phone after looking for a bit, one of the things that bothers me about these smartphones I how big they all are almost like DVD cases. not to mention being $400.00-$800.00 for a damn cell phone, wow. But I find one that’s probably the smallest one in the store width, and height-wise. I get all my stuff backed up and transferred to the new phone, decide I wanna use it for a few days to decide what kind of case I want to get etc. So, they slap the couple extra per month onto my bill and test call me and I’m out of there. I will say they’re pretty damn efficient, even if they’re trying to upsell you until the second you set foot out the door, no worries its sales, I get it.

I stop by the “adult beverage store” as I’ve had a pretty long day and am gonna need a stiff one when I get home and decide to eat some dinner, we had soft tacos, one of my favs. And I continue on with my night messing with my new phone getting it set up just like I like/want. I get comfy in bed and then all of a sudden my stomach tightens up…”damn it I know what this means, so off to the bathroom…but, nothing happens, nothing happens, and still nothing happens. Now, I’m not gonna get to graphic but, I’m dying here straining, and turning red, lol. Well, after over an hour I say screw this, jump into a scalding hot shower and head back to bed, but with that feeling still, which is one of the worst…id rather be anything than bound up…ahhh. Oh well, just CF life.

Well, now its 3:20am and I’m still awake with a stomach ache, this sucks. hopefully ill be able to sleep soon, but who knows. So I sit here figuring out all the little peccadillos of my new phone, down to the background of my txt messaging screen…lol. Here’s the old OCD again, everything has to be PERFECT.  Moreover, balance, categorized, and even symmetrical, down to how many screens I can slide between…1 home and 2 on either side…you know cuz balance…lol.

BUT, its giving me something to do, so I’m cool with that. I have made my second adult beverage (wild turkey…just FYI) and am gonna find a good movie to watch…hope everyone’s weekend plans are set, and enjoy them!

GOODNIGHT!

 

 

 

 

 

Fighting Sleep

So, its almost 1am…I had pretty busy day today. From my last post you might have seen I thought I really fucked up my mouth (please excuse my vulgarity I’m half asleep and I’m just freewriting) .

Well, it turns out I didn’t do as much damage as I thought I did…I did break a tooth but I only knocked off a piece that was obviously pretty weak anyways, and it was on a tooth that has been giving me trouble for some time, as I have a pretty serious ADEK vitamin deficiency (thanks Cystic Fibrosis). But, I didn’t mess up any of my other ones when I crunched down on it, or at least as far as I can tell I didn’t. Not to say it didn’t suck, and hurt like hell, because it did! But, if I get in to the dental office in the next couple weeks I should be able to get it handled, or that’s what I’m hoping.

However, I sucked it up and passed out last night because I had stuff to do today. A bunch of stuff that again I have been putting off because I’ve been feeling shitty lately finally got done…yay!

I went to the eye doctor and got an exam and a new pair of glasses. And hopefully in a couple weeks ill go back and get some new contacts as well.

I went to the Verizon store because my phone is glitching  like crazy and in a few days I’m gonna go back and pick up my new phone! I’ve had the same one for about 5 years, and since I found out today smartphones only have about a 2-year shelf life, I got a pretty good amount of use out of it.

I stopped by the grocery store to stock up the mini fridge I keep in my room, when I’m too tired or weak to go downstairs this thing is a lifesaver. I keep things like Gatorade’s, yogurt, waters, applesauce, sandwiches (that I make 3-4 at a time and put in baggies) and some drinks: chocolate milk, OJ, ginger ale, etc.

Then I went back and picked up my glasses, as I didn’t realize they had a 1-hour glasses thing I was super excited since for a few weeks I’ve been wearing a pair that is superglued together after I dropped them and then stepped right on them, on a wood floor no less ahh…lol.

Anyways, all in all it was a pretty good day, even though I still had my regular CF pain and stuff: stomach aching, tight chest, coughing up a lung, however, I didn’t have to puke in any bushes from coughing…so that’s a win in my book.

Then I got home and had some dinner, then a couple of oranges, and a bunch of grapes…yummy! Played some PlayStation: NBA Live, and Call of Duty…tomorrow I may whip out the Skyrim. as I don’t have a job currently I have a good bit of free time. Which to be honest Is good because of how sick I’ve been.

Now, I’m sitting here watching Washington vs Arizona State…fighting my heavy eyelids so I can get this blog post up. In the hopes that NIKE, PLAYSTATION, or some other commercial entity will somehow see this and decide they want to sponsor me or have me as a brand ambassador…lol…hey I can dream right?

Hope y’all had a good day, and a have a goodnight!

 

 

 

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!

Struggling

Its about 1pm on Friday, and I’m struggling pretty badly. Haven’t been feeling too good this week at all, I’m definitely having a rough week to say the least. Just a couple of the things that have been ravaging me this week:

  • Cold –> hot –> cold –> hot –> Freezing…this weather where I live is strange to say the least. When it goes from hot to cold like this, especially this often, my body has to adjust and readjust, and it makes things incredibly hard.
  •  I had some kind of food poisoning, or at the very least a nasty stomach bug. Been in the bathroom a lot. When I’m not, I’m in bed trying to keep myself in the absolute    “right position” so my body can relax and give my abdomen a break.
  • Then there’s the outside stressors that have added onto the joy of this week like getting a notice that my car insurance is going up, and I still can’t find a reasonably priced health insurance.
  • Also, had a death in the family…my Grandmother’s brother died a few days ago, and when people around me die it makes me wonder how I am outliving these people who die for no reason, meanwhile I’m sitting here struggling to breathe, and I’m still alive. Just a weird sort of mind job I’d rather go without.

So, ya that’s what my week has been, riding the struggle bus for sure, but not because of a hangover or anything where I had too much fun. Just the regular old BS that having a chronic illness brings to the table. That’s also the reason I haven’t blogged in several days.

But, anyways…I am finally starting to get a little relaxation and some of these additional symptoms are going away. While I can I am going to try to get some stuff I need to get done handled. Hopefully everyone had/has a good week, and now weekend. Ill try to get up another post a little quicker next time. Hopefully today is the last day of this extra fun! Lol.

Sorry, I can barely think straight, so no CF tips, or body hacks on this post. I’ll add one the next time for sure.