UNC, Kentucky, Pittsburgh, Georgia

LOL, so it’s Tuesday night, and I’m sitting here watching basketball, munching on some dinner…I have my favorite teams set on TiVo, which is why I’m on a slight delay. Now, I realize there’s some players out sick from Kentucky. However, this is a strange basketball night to say the least! The Tar Heels just barely beat Pittsburgh, by a single FG…lol, um what??? Now, Kentucky in the first 3:00 against Georgia is getting run on 16-2.

Anyways, I am into the second of the two games now, so we’ll see if Coach Cal can pull this win off with some of his guys out sick, but again very surreal night of basketball…it happens. Hope everyone is having a good beginning of the week!

Follow me on Twitter @William85887…y’all have good night!

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…

Living, not just Surviving.

Saturday morning…wake up, stretch, enjoy the fact that it’s the weekend, is there any better feeling after a long week? I don’t think so, and as I sit here typing  and listening to music with some college basketball in the background I revel in the joy simple things can bring. That is one of the hardest things I’ve come to discover about CF, is that if you don’t live when you can, you will only survive…and that isn’t any good at all. Sadly I’ve had times where I’m just surviving, but I’ve come to a point where I was so stressed, tired, angry, sad, depressed, everything was hell! Several years ago it hit me like a ton of bricks with razors embedded in them. I decided right then and there that was not going to be my mindset going forward. After a doctor appointment with my amazing head shrink I did it! I literally just quit with all the negativity, the yelling, the being mad, the hate, and the distrust in life. I walked out about 20 steps outside the building and that was it, I was done being miserable!

Now, please don’t get me wrong, life for me isn’t easy by any stretch of the imagination…it’s hard, it sucks, it makes me want to freak out. However, I now have control over my mental faculties to a point where I can be miserable all day, and still enjoy a drink, a good conversation, movie, book, anything…It is an amazing weight lifted, I was always walking around in a toxic head state. After having a few years of rational, reality based thoughts, and not losing my shit every time something happens I am in a much better place in general, but more specifically mentally I am solid. So, in my current situation, I deal with the same “problems,” I just handle them 50x better, and it’s amazing how it changes your outlook, your perception of life. It was a damn hard thing to accomplish, but it was worth the time, effort, self-doubt, self-loathing even to get to where I am now. If I hadn’t gotten better I would probably not be here anymore…which is weird to think that would’ve been what brought me down.

Anyways…lol…but, feeling better about life is a good thing no matter how far gone you seem it’s always possible to gather up your broken parts, put them together, and move forward. I did it, and so can you! I won’t be simple, straightforward, quick, or any form of basic nonchalance you can think of. In the end though it will be worth it, you’ll look back and smile at how far you’ve come. I believe all of us can attain our happy place in life, and with a little help from people with knowledge and experience it is absolutely able to be done. Having said that, if anyone whos reading this needs, or knows someone who needs a little bit of help/guidance please don’t hesitate to ask me…that’s is the point of my attempt at this site, and blog. I want to be there for the people who feel like there is nowhere else to turn and nothing good in sight…no light at the end of the tunnel is a horrid feeling. Please, do not feel like you’re alone, you aren’t and I would love to help you understand that. Lets change our perspective’s and be happy!! Hopefully everyone is having a great weekend, and enjoy the rest of it to the fullest!

CF Life tip of the day: Do not compare yourself to people who aren’t walking in your shoes, or who have never walked in shoes like yours…Trying to fit in is just human nature, but be happy with your place in life and find the places, people, and activities that make you the person you want to be. It pays dividends to be happy being YOU.

CF Life Body Hack # 2: As soon as you wake up drink a half-bottle of water before you do anything else, and then use the rest to take your morning meds, after that slam something nutritious into your stomach (yogurt, fruit, crackers, smoothie/milkshake) something you enjoy enough to use it most days. The water will lubricate your system, and loosen up mucus. The nutrition will give you the needed energy to get your day going while you tough out the difficult stuff (coughing, hacking, bathroom, etc.)

Your Weekend Plans…?

TGIF!! It’s Friday afternoon, and I love the feeling this day brings…it’s like a small holiday once a week, I’m weird I know, lol I’m glad I have the ability to laugh at myself though. So, yesterday I took a huge step outside of my comfort zone, and I posted a video on YouTube and blogged with a link to said video. Now I have 12 views, and a couple of new followers! I have to admit it scared me to put myself out there like that, but I did it, and am glad I did. As for me I’m going to start today, and use my weekend time to get a little more versed in the social media stuff I’ve been a little behind on. I’m going to update my Twitter, as it has been stagnant since its inception. I am probably going to look into Instagram, Pinterest, Tumblr, etc. to see what fits with my desired platform blueprints. Also, since my first video was kind of raw, and not very professional I am going to look into ways to better my recording process, and I think I will probably need a new camera as the one on my computer doesn’t seem to be very decent. If I had the money I’d just go right now and buy one, but ill have to figure something else out until I can swing that. I am super excited because I really feel like this is going to allow me to do what I want to do, and that is help people who feel like they’re alone, with nowhere to turn. It’s hard to put yourself out there not knowing what will become of the vulnerability you show, but so far it’s been worth it!!

Anyways, that is what I intend to do with my weekend, what about you? What are your plans? Going to a movie, party, or yummy restaurant…leave a comment and let me know. Also, I am going to do a social “mixer” at some point in the near future. I am not exactly sure how I am going to facilitate and accomplish this. However, I’ve got a couple ideas that will hopefully allow people to come together (probably virtually) and share some ideas and stories in real time. I will be trying out several new things on my site, blog, and YouTube channel so keep an eye out. Any ideas or suggestions are welcomed. Hopefully everyone had an ok week, but are ready to have a great weekend! Thanks for stopping by, it’s always very much appreciated.

CF Life tip of the day: Instead of using expensive box tissues, buy some cheap but soft rolls of toilet paper to keep near where you spend the majority of your time e.g. bed, car, desk, etc. That way you have something to cough into instead of your hand, tissues for your nose, and even a “napkin” in a pinch.

CF Life Body Hack # 1: Getting sore, uncomfortable, bored, or just not in a great mood? Go to an outside area where you can get some fresh air, give your entire body a good stretch. Now, starting at your feet flex then relax your muscles progressively moving upward all the way to your forehead, make sure your breathing is controlled and steady. You should notice immediate improvement in your mood, as well as physically being more comfortable.

 

Video #1 is uploading…

I just made a post on here about 30 minutes ago, and I wasn’t even sure at the time however, I have decided to create some video content and upload it to YouTube. It is actually in the process of uploading right now. Disclaimer: It is the first video of any kind I have ever done, and it is raw. It isn’t polished, and in HD, and all of that yet because I don’t really know how to go about doing that stuff. As I’ve stated in previous blogs, I am not up to par on all of the social media platforms and stuff like everyone else just naturally progressed into. So, as I go I will be learning, I will improve upon both this and my videos, as I hope to be able to create a sustainable platform for myself and people like me, or even just curious strangers who wish to take a peek into the life of someone who focuses on their health 90% of the time because it is necessary. Hopefully you can pop over and check it out, I will put the information and maybe a link up as it finishes. Any advice, constructive criticism, help, anything like that is welcomed as I am definitely a noobie.

As I said I would come back after the upload…my video has finished. Please take into account it is the first video I’ve ever done of any kind, so please be gentle…lol. Just kidding, let me know what’s wrong with it, how I can make it better, aside from the obvious (lighting, timing, etc.) any constructive criticism is welcomed and much appreciated…if it even reaches one person and gives them a bit of knowledge, helps them cope with difficulties in their life, or even just informs someone who has a friend with a terminal illness, then I’ve succeeded at what I was going for.

Video #1 is uploading…

Affording Cystic Fibrosis

It’s about 4pm on Thursday, and I’m sitting here trying to figure out what to do with myself…I’m having one of those days, CF is particularly rough but some days are much worse than others. Today is one of those days, I woke up hacking, and haven’t been able to catch my breath since. So, in trying to distract myself I was calculating some of my finances for the past couple of months, and months to come. I’ve figured out I’m basically f#cked, and it’s hitting me pretty hard. Strangely I don’t qualify for certain health insurance or “aid” programs, literally none of them. I applied in September the last time and got a prompt letter back denying any financial help. I’m super frustrated because CF is an invisible illness, and it’s recognition is sparse. Anyways, as of now I’m only a small amount behind, and thinking of every possible way I can to try to catch up but I’m definitely “behind the 8-ball.” Since a few years ago it’s been a game of cat and mouse trying to get these government agencies who are supposed to be there to help people like me to even respond to my requests for further information on denial of aid. But, if I keep this train of thought it is going to ruin my whole day, so I’m going to quit my complaining now, and try to do something positive to keep my mind occupied.

Hope everyone is having a bit of a better day than I am, thank goodness the weekend is almost here…ahhh.

70° in the middle of January…

So, it’s 70° in the middle of January…this is absolutely nuts, a week ago it was snowing and getting down to single digits, and now its 70°+. This is extremely aggravating when you leave the house prepared with for your day with jeans and a Patagonia on, and then halfway through the day you are stripping down to your undershirt and rolling your pant legs up as you drive so you don’t sweat you a$$ off all day!

However, on that note it is beautiful golf weather, my favorite hobby or outdoor activity, but I’m usually used to waiting until March to play. So, maybe i’ll throw the golf bag in my car and head up and play 9-18 in a bit, as I finished working very early this morning…didn’t sleep much last night. Anyways, I hope everyone is enjoying this weird weather, the end.

Back to normal “hacking” my health.

It’s about 3:30 pm and I’m sitting here having just finished up some work, don’t really have anything else that’s super pressing to do today so I’m going to blog a bit. I want to start this blog post out by asking a couple of questions…anybody who so desires can respond. It would be appreciated so maybe I can tailor posts to a certain request for knowledge, experiences, information, etc.

So, after the holidays are over everyone has those couple of weeks where you’re stuck in-between being in a holiday type mood, and moving on to get back to “normal” life. At least that’s where I’ve been and may even still be a bit…since I love this time of year so much I tend to drag is out as long as I can. Being that it’s over however I have been having some weird stress and anxiety the past several days, and I’m not too sure why…? I woke up a couple days ago and the CF crap had weaseled its way back into my main thought process. It sucks, but with that there comes a bit of an ability to view things from a distant perspective. Meaning even though it sucks I can kind of step back and review how I am doing before, during, and after the holidays, and why. I’ve been waking up at 6-7am again as opposed to being able to sleep comfortably until 9-10am, I don’t like it but it gets me back into my regular routine. If I had my way society in general wouldn’t get moving until 10-11am and go until later in the day, but that’s just my personal preference.

Here are some of the things I’ve re-instituted into my daily “body/health hacks” some may be helpful to anyone and others may only be applicable to people who deal with terminal illnesses like Cystic Fibrosis, diabetes, Crohn’s, etc…so, body/health hacks: when I first wake up I cough like crazy so I keep two drinks on my bedside table, 1 is a bottle of water(a must) and the second varies, sometimes its tea, sometimes its coffee, so basically something with minimal sugar or a sugar amount I can control. The reasoning being that a bit of caffeine will open up closed airways, so when you wake up in the morning all congested and clogged up

So, my day may look nothing like yours, but these things work…so try them out. It helps more than you think to be able to just pull a snack out of your bag that isn’t junk food. Or, to have a drink to hydrate with, and then one to sip on as the day goes, again something healthy as well as cheap being that it isn’t a $5.00 Starbucks, or a drink from the 7/11. All of these things not only help physically, but also mentally it’s comforting to know I won’t get hungry in traffic and have to pull over with low blood sugar. Finally, it saves me some money, as I don’t have to stop at junk food stores to refuel. These are just a couple of the many things I employ in an attempt to keep my body at a functioning level, keep myself from being hungry/thirsty, and without braking the bank, which I do just keeping up with Dr.’s appointments. All in all it is very helpful, and I can post more of these little tricks or “hack’s” as they are so often referred to in pop culture…They may seem inconsequential to most but when just doing your day is a rough task any little bit of relief here and there is a godsend, and enormous edge in keeping your health up to par while going through life and trying to keep on keeping on. Hopefully this helps one person figure out something they didn’t previously think of, or didn’t try before. That is the whole point of my page, and my blog, I want to be able to provide relief in situations where I didn’t have any help, or even information to go on. Enjoy the rest of your day!

New Year 2017

Well, it’s been a while since a posted anything on here. I tried my best to enjoy what parts of the Christmas – New Year’s holidays I could. I actually had a pretty good couple of days in a row, which is very unusual for me. So, on Christmas Eve we went to the Melting Pot, and it was delicious. On Christmas day we slept in a bit, then we woke up and had our morning coffee/tea as we each opened our “Santa Present” which was a stocking. As we sifted through the candy and little knickknack’s we enjoyed the view out over the cul-de-sac we live on. Then we dove into our presents and me, my mom, and my stepdad went in turn opening, we usually go smallest to largest, or go in the order of which presents we get handed…I don’t know why we do it like that, other than some gifts are prerequisites to other ones. It was very nice, relaxed, and enjoyable. As my “natural Christmas energy” flowed I soaked it up, and enjoyed every second of it. I’ve mentioned in the past (I think) that I get a pretty noticeable boost of naturally great energy that flows through me during certain holidays, and a couple other very specific times of the year. So we went through the day and the next enjoying great food, and yummy drinks. We had a good spread of Xmas morning food: orange juice, coffee, tea, Champagne for Mimosa’s, fruit, cheeses, eggs, smoked salmon, and a few other miscellaneous finger foods. That went into lunch, and for dinner we had a really good beef roast with potatoes, green beans, gravy, a really good bread with herb butter, and some sparkling grape juice (family tradition). The day of and the next couple were extremely enjoyable, we had a really nice couple of days, and I kind of forgot about how I felt with all the good vibes surging through me.

As the New Year rolled around the spirit of Christmas had kind of faded, and I was starting to feel crappy (my normal) again…but, I decided to kind of amp up a couple of my meds, and keep the spirit alive as long as I could. So for New Year’s eve we had a bunch of people surrounding our neighborhood doing fireworks, so after dinner we grabbed a couple of drink and went outside and set up on the porch to watch the show! It was awesome, we had a 360 degree fireworks show, when one direction died down we just rotated our chairs and kept on enjoying the show. After a couple of hours of hanging out watching fireworks, munching on leftovers, and sharing some drink and some laughs we went to bed. New Year’s day was nice also, we all slept in until like 10:30-11:00 then we woke up and my mom put out the breakfast snack’s, as well as getting everything else we had enjoyed the past couple of days out of the fridge, freezer, etc…warmed it all up and set it out. We went throughout the rest of the day grazing over the table of leftover delectable, finishing up the holiday drinks: eggnog, a bit of bourbon, champagne, juices, and sparkling grape. As we stuffed ourselves we also, watched a couple of really good movies, a couple that we watched  we showing on TV and the others were movies that we had received as presents. All in all it was very fun, we enjoyed each other’s company, did the whole visit/call family members, and did a good bit of laughing, which I absolutely love to do. It was an absolutely great several days!

Soaking up the Christmas spirit was something we all needed very much, especially because my family needed it. Having the CF makes all the year pretty rough, and sometimes we forget that our family, especially the ones closest to us, tend to carry a good bit of the burden when one of their own has a disease like CF or another lifelong illness, be it terminal or not. It’s kind of easy  to get caught up in your own “stuff” when you are sick all the time, but remembering that they are also suffering is something that needs to be recognized to allow everyone who needs an outlet for their feelings to let that stuff go for a while. Well, it was a success, we had a great week…and brought in the New Year together with laughs and love. I hope everyone’s holiday was great and that you enjoyed your family and friends. Here’s to a great 2017!!