Mundane Monday

Well, it’s Monday again…no more weekend relaxation for five more days. I like everyone enjoy the weekend, and especially because it allows me to reduce the amount of time management I have to do in relation to my Cystic Fibrosis treatment, timetables, diet, etc. I can relax a bit on the weekends, and do things in a more slow paced fashion.

So, when the weekend comes around I start to get less stressed in general, and the reverse happens when the new week begins. I start to get stressed out, usually late Sunday, but sometimes not until Monday. Moreover, it always focuses around how I anticipate I am going to feel, and what I am going to have to do to compensate.

I’ve reached a point in my life where most of what I do is routine, and I’m used to it…it’s just my life. But, there are those few things that pop in and out of my routine, that throw a wrench into the gears. Some things become more pressing, some become less…creating a situation where I have to prioritize needs, instead of wants. In prioritizing needs things become extremely convoluted and, unless you’ve experienced it in such a defined way it is almost impossible to explain in a way which the average person could warp their head around.

You may be thinking to yourself I have had to prioritize needs before, and before you start assuming that I’m just making a mountain out of a molehill i’ll explain further. When I say prioritizing needs I don’t mean deciding between needing to get new shoes, or a new belt…or  deciding between needing to get a new piece of furniture or a new TV…or even something more personal like deciding between needing to fulfill a task given to you at work, or one given to you by a family member or close friend.

No, when I say prioritizing needs I mean deciding between needing to go to a Dr. appointment, or getting nutritional supplements…or deicing between refilling a prescription, or making sure you have enough food for the week. Maybe one of the worst of all deciding between what health information to share with family or friends, and what to keep to yourself…for fear of creating more stress or angst among those you love.

There are so many problems that we as CFer’s, anyone with a terminal, or lifelong illness face…some of them are easily adaptable, and some are so disconcerting that we would rather keep them bottled up than share, and have the possibility of allowing those problems to affect the ones we cherish. That is one of the harder parts of CF, it isn’t the coughing up blood, or aching all over, or even being stuck in the bathroom all day. It is watching those around you and feeling their pain as they look on helplessly. It is deciding between several things you have to have, and choosing between the MOST pressing of the issues on your plate to focus on. Making those choices of which need is more important, deciding what issues to keep to yourself, or even trying to shield the ones you love from your spilled over problems can sometimes be more taxing than any of the physical symptoms combined.

I guess that is the kind of problems I anticipate about the new week…what will pop up that I have to set other problems aside to focus on now? How will I approach the unapproachable amount of shit on my plate? And, how will I protect my loved ones from feeling, or even seeing my pain? They are questions I have yet to find answers to and I don’t think I ever will…

So, until I do figure out how to be “Superman” I will continue to do my best to put on a smile, move forward with my head up, but make sure I keep my chin down to avoid the unavoidable blows life throws at me (little martial arts pun). I will take things in stride, and try to keep my cool in all the shitty situations I am faced with, because that is what I have to do to keep my sanity, and to make sure the problems I have don’t become the problems of everyone around me, admittedly this doesn’t always work, but I will try regardless. I will smile, and laugh no matter how much of a terrible day I’ve had, and how badly I feel, because that’s all I have at times…is my inner strength, my will, and my ability to deal with the pain all day, but still smile.

 

Feeling Powerless

It’s 1:15am and I’m unable to sleep, also I haven’t posted anything today…so, I wanted to get this out while it was fresh on my mind…

The past few days I have been feeling relatively good, and haven’t had too many unexpected issues…until tonight.

So, a few hours ago, after I had dinner I am sitting around on Twitter, and Facebook, etc. as well as watching some TV, American dad, one of my favorite show. When all of a sudden I got extremely sick to my stomach…”here we go” I thought to myself…as I made my way to the bathroom.

After about 30 minutes of throwing up, I took a quick rinse off in a hot shower, to bring myself back to life, but also to clean up and get ready to go lay down and relax my tensed up abdomen. As well as my insanely horrible headache…

As I am sitting in bed I am going through some emails, and some other projects I have been trying to put together lately…and it kind of hit me in a weird way that the impact I am having on making my health better is not what I want it to be, which made me start down the “dark thought path.” Which is one of the worst places a person with a terminal illness can go to psychologically, it is a dangerous rabbit hole.

Well, I couldn’t stop it and several things came to mind…

  1. I  want to be back to my old self again…super healthy and only sick on the rare occasion…is it possible?
  2. I also want to reach more people like myself, who maybe sitting up at night alone, scared, with thoughts racing to the darkest places a mind can take you.
  3. I have limited resources to accomplish (1 & 2)… so, how do I do it in any kind of expedited fashion? I don’t know…
  4. Life is extremely short for all people but, with a terminal illness any day could be my last, or could be the last good day I’ll ever have.

As you can see these are not things one wants to think about, especially when feeling sick physically already, and sitting up alone, at close to midnight.

So, I started to compile a list of things I want to do, something I have done many times before, but in a more “dreamy” fashion. This list was REAL, it was harsh, it was definitive. Tomorrow is the first day I am going to start attempting to conquer this list, and I know I cant do it alone, so one more time I am asking for help…

If you know ANYONE who has the ability to facilitate introductions to leaders in the business community, please leave a comment, and let me know. I am trying to leave something behind to the people like me, who may be able to benefit from the struggles I have and am going through. Maybe set up a foundation, or even some kind of social network dedicated to allowing people like myself to communicate with each other in REAL TIME..but, not just like a Twitter, or Facebook kind of thing, something a bit more open. A place where strangers can come on anonymously if that is what they desire, chat with someone for a little while, or a group of people, and then leave. No log in, no required email, just a “virtual coffee shop” so to speak, or maybe even closer to a virtual “bar/pub.”

I realize people always need help, and will always need help, and I can’t fix all of that…but, if I can create something that at the very least allows CFer’s or anyone with a terminal, or long-term illness to have someone to reach out to. Being that in times like the one I’m in right now, that would be an enormous burden off of my shoulder’s, I want to get that going ASAP. And if I can do that in a day, week, or month…I want to do it.

That is asking a lot, I know. But, I don’t have the luxury of waiting patiently anymore…and that hit me tonight like a ton of bricks, so I am going to start reaching out to everyone I know, and if you would like to be a part of this or know someone who can help, in any way, I would deeply appreciate it.

With that, as it is a lot, I will end this post…hopefully I can stir something up, because I AM going to get something going, and the more people I can get involved the better. This feeling of powerlessness is a horrible one, and I want to prevent other people from having this feeling consume them like it does me at times.

Goodnight, and thank you for reading…

“Off the record”

YES, it’s Friday afternoon, and I have had a rough week. However, most of the time the silver lining of CF or life in general is only visible behind a cloud of unpleasantness. I have been trying to raise some awareness to this invisible illness Cystic Fibrosis, that so few American’s have, and in doing so I have realized some things about people in our society. The term out of sight out of mind is an insane thought until you put some thought behind how YOU operate in your day to day life. Think about it, when you have a sick friend, or pass a homeless person in your car, or see a dog get beat by some dickhead it bothers you, however as soon as that next thing pops into your brain its replacing that “bad feeling.” Its not that we do these things on  purpose, its just in our nature.

Imagine what the world would be like if every time we saw a homeless person we stopped and helped them. If every time we saw a sick friend we did everything in our power to make sure they were on the path to getting better, or at least getting help. These thought have lead me to a silver lining thought: We need to put our money where our mouth’s are. So, I am going to start doing this at least once a week, I am going to go out of my way to help somebody, but here’s the catch, none of what I do is going to be recorded, or even shared with anyone. I am going to do everything I can to keep it between me and the person I am helping. I could be something as simple as helping an older lady load her groceries, or getting a meal for a homeless person without asking first, “just do it” (as NIKE says…

This isn’t really a new concept, but it is one that isn’t employed enough, we too often just go about our business. Sadly, I am guilty of this as are most if not all of us. So, I ask that you reach out and help someone at least once a week, if not once a day. I know that’s asking a lot of people who are already very busy, and spread thin. But, I believe we can make more of a difference than we feel we can as one person, if it’s a bunch of us doing it the results will be amplified greatly. Now, it can be someone you know, or a total stranger…but, please be safe while doing this. Some people are looking to take advantage of kind-hearted people so use good judgement. With the Super Bowl just around the corner we are all planning a party, or making arrangements for gluttonous amounts of food and drink to be available to us. Meanwhile, just down the road the man on the corner is starving and sleeping outside. Sometimes we get so caught up in our own problems we forget to reach out and realize that there is always someone who has it worse.

I have Cystic Fibrosis, it sucks horribly, it’s painful, and it makes most daily activities very difficult…if not impossible. But, I have a bed to sleep in, clean clothes to wear, and food to put in my belly. I’m not asking you to go give everyone who looks down on their luck $100 bill…I am asking you to give them a bunch of bananas, or allow the lady with a crying baby and three toddlers to go in front of you in the checkout line, simple things that can have a greater impact than the action taken.

Hopefully your week wasn’t too rough, and have a great weekend. Be safe, there will be crazy, drunk, idiot’s out driving around from party to party watching football, and consuming huge amounts of alcohol. Enjoy the game, RISE UP, and watch the Falcon’s win this thing!

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…