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!

Imagine…

So, it’s about 2pm and the Super Bowl is going to come on in a couple of hours, so with a small amount of time to kill, I am going to write this and then i’ll be done for the day, probably won’t post again until tomorrow. I am feeling pretty good today, aside from being congested a bit (the cold weather always does this to me) so I am trying to get some stuff done that I didn’t get done this past week.

As I’ve stated in previous blogs, I am seeking and trying very hard to find my place in this whole social media neighborhood, as well as finding my niche, if you will. Working a 9-5 is out of the question for me, getting creative about how to earn a living, and ways to create income while being happy at the same time is something I have been focusing on a lot recently. I find myself dreaming about being a spokesperson, or brand ambassador for clothes, cars, lifestyle consumer goods, etc. It is a bit daydream-esque I know, but it is my dream to be able to focus on my health, and have that focus be the platform for which I “sell” myself to companies showing the world what someone with Cystic Fibrosis can do with a bit of financial, or product backing. So, I have been researching what kind of companies “sponsor” people, and although there isn’t a lot of “individual sponsorship” for people who aren’t famous or star athletes, there are a few people who’s model I am going to try to follow, but in doing so I want to carve out my own path, something that really hasn’t been done much, if ever. Now, watch me transform my health, my life, and my community while dealing with the daily struggles of CF, but no holds barred. So, no filter, no censorship…the raw and real life that I live, but with the things I want and dream of being intertwined to a create a journey of regaining my former glory of health, so to speak. A full vision of what my life is, the roughest and best parts of it. Intertwined hopefully with some kinds of product, service, and financial support I am doing everything I can to attain. So a car commercial, a clothing commercial, a food commercial all rolled together and how it pertains to me and my health, the way I have to do certain things, and how those products or financial backing play a roll in what I do, when I do it, and how I do it. I realize there are a lot of “if’s” in the idea I am figuring out how to bring to fruition…there are already hurdles I had no idea I would run into, so I understand it’s very presumptuous to think I can do this or obtain the things I hope to obtain…it’s my dream though, and I am doing everything I can with what I have available to me to make it a reality, hopefully one day I’ll be looking back reading this saying “I did it, I’m here!”

How it looks in my mind: I wake up and the camera is already rolling “a day in the life begins.” I roll out of bed and do my morning coughing and hacking routine where I maybe reach for and drink, thanks to their sponsorship, my bottle of Gatorade.

Then I get all of my medications and treatments out of the way, while I play around on my computer or video game (given to me by the electronics company that sponsors me with their product’s) and relax while listening to my earphones…

As I finish up and start down to the kitchen to make some breakfast I open the fridge containing all the Boost, yogurt, etc. that I can consume, with the help of their generous sponsorship, my product placement is me nourishing my tired, sore, weak body with a couple of chocolate Boost’s and a yogurt to get my blood sugar up.

Next is bathroom and shower time, this is my personal time to get my mind right, and allow the hot water to reduce the tension in my muscles and relax my body…afterwards I use my skincare, or sore muscle creams to ease the rest of the pain and continue my day.

I come out to head on in and get dressed, depending on the day’s tasks, appointments, business meets, etc. I reach for a certain garment of clothing provided to me by my favorite outdoor apparel company, or if it’s serious business, I select a suit and tie from the couple of tailored suits given to my by a generous men’s business attire company. I then throw on my New Balances, or my Sperry’s or my penny loafer’s…all depends on what I have to do that day.

As I finish up and get ready to head out, I go out and start the truck, sedan, or coupe generously given to me to get around, and act as a rolling advertisement, by my automobile sponsor. Which is decked out with ad placement in the form of stickers, or a certain “full-body” decal, or a window flag, maybe even a creative license plate, or paint job.

I head off to the meeting where I am doing a collaboration for a podcast, a meeting with a pharmaceutical company about their new allergy medicine, or their new version of a rescue inhaler, even something generically taken by many people Advil, or Tums…whatever company willing to throw their support being me, I will give my all in helping them reach the goals of said company.

Now, this is entirely fantasy based post, none of this real as of now, and none of these companies support me in any way, this is basically an: if I could wake up tomorrow and be in a world created totally by my dreams and wishes scenario. Idealistic would be good description…but, fantasy is more on point. This isn’t probably something that’s even possible to do, as most professional athlete’s don’t have this kind of sponsorship…but, just imagine…being able to focus on my health totally, not having to worry about what I was going to wear, how I was going to get form point A to B, what I was going to eat, if I was able to afford my medication, and doctor appointment. If it were all, or even partly covered by some kinds of help from the corporate world it would change my life.

These are the kinds of things I dream about…not luxurious trip’s, or expensive watches, the newest iPhone, the most sought after rims for a car, endless margarita’s, or anything of the sort. I dream of being able to, as If I didn’t have CF, just LIVE, to do the daily activities most people take for granted as they move forward in life purchasing their first car, their first home, having children, getting married. It’s not impossible, but it’s very improbable that I will have that kind of life, the Cystic Fibrosis is an incredibly heavy ball and chain that keeps me in the place I’m in, basically just keeping my head above water is requiring all of my energy and time. So, my dreams include the things that would allow me to flourish, or just have what most people consider “normal.”

Again, I know how this sounds, trust me I see it the same way, but that doesn’t mean I am not going to try…because you never know. Someone reading this could be a fortune 500 executive, and decide hey I like this guy’s idea, and id love to help him get his health back in order…let get the ball rolling…lol. I know, I know…but I can dream right? lol. Anyways, enough of this high fantasy, back to reality it is. Either way I appreciate you taking the time to check this out and have a great day, be safe while enjoying the Super Bowl.

Reluctantly, here it goes…Help me breathe??

I have been trying to figure out a way to keep my health in good standings, with Cystic Fibrosis that is a huge undertaking. Many times it seems impossible, so with extremely deep reservations I am going to do this, something I have been thinking about for a while, frankly very scared to put myself out there. However, I reached a point of no return, I have to do this to keep taking care of my CF…I need some help!

So, I have created this blog site, a YouTube channel that is in the works, a Twitter account, and am in the process of checking out other platforms. I am trying to get some corporate type sponsorship’s to assist me in the endeavor of taking care of my Cystic Fibrosis. The financial strain on my family and myself is too great, I have no other options. I am wanting to get my health back to a place where it is not controlling every aspect of my life, but with CF that’s a very touch and go situation. I basically cannot afford having CF anymore, and desperately need some assistance. I have done some research and decided the best way to go about this was a sponsorship type situation. Basically, I want to try to get sponsored to document my transformation from being extremely sick all of the time, to getting myself back to where I was 10-15 years ago. With a little luck, and a lot of help from the business/professional community at large, I am hoping people will see this and want to take action in helping to fight this nasty disease called Cystic Fibrosis, to help me breathe…

I’ve put a lot of thought into this, and it is really the only way I can put my focus on my health, as doing so requires the other things in my life to take a backseat. I am trying to find sponsorship for things like food, medication, doctor/dental expenses, living costs, transportation, and daily expenses in general. I am not usually one to ask for help, in fact most times I will suffer in silence, but this is as much for my family as it is for me. They need a break, they deserve a break, they deserve to have some help. Since I cannot fully support myself and keep my health up at the same time anymore, and being that I don’t qualify for ANY State or Federal assistance (I have been denied every time since the age of 18) I am taking this leap of faith.

This isn’t in my normal character to ask for help, like I said…I’d usually just suffer, but I feel like this is an opportunity to shed some much needed light on things that are so rare they just don’t get as much attention as something like Cancer, or diabetes. Cystic Fibrosis is a death sentence without the right course of action, and as I keep getting sicker the clock is ticking. I want to show people that there is a way to accomplish things in life that seem like unbeatable hurdles. I want to let people see that being strong is a good thing, but if you need help asking for it can bring some people, places, or things out of the woodwork that wouldn’t usually be there. Hopefully it can be done…

So, if you know anyone in America or around the world who would be willing to help a CF patient fight this battle, and try to win their way back to healthy I am asking you to share this (my) story with them. I am going to do everything I can to get myself back to being in control, and I am going to document the process of going from sick —> not so sick —> damn that guy has Cystic Fibrosis?? I want to win this battle, but I need some help to do so…and, asking that is very hard for me.

I am reluctant to ask this, I know it’s kind of a strange request. But, I want to be able to say I did EVERYTHING possible to come out on top of this. To beat the odds is not going to be easy, but with some assistance I think I can do it! Thank you for taking the time to read this, just taking the time to read it means a lot to me. Any recommendation’s, question’s, suggestion’s are welcomed with open arms and a full heart…