Cystic Fibrosis Late Night

Damn, I just had a late night “CF Attack,” these things suck! So, it’s 1:30 A.M., I haven’t been asleep but maybe 30-45 minutes, and boom I wake up coughing really hardcore…so much I ended up in the bathroom throwing up. Well, after I finish throwing up my stomach is in knots, I wait in the bathroom for a bit just in case, and then take a quick shower so I go back to bed. Well, now I’m laying in bed wrapped up in a bathrobe, and towel…but, I’m freezing my ass off because it dropped down so cold tonight, especially being that this afternoon was like 70º, this sucks badly. Also, I’m still coughing, and since I can’t go back to sleep like this I’ll probably be up for the next few hours being nauseous, cold, sore, with tense abdominals, and a horribly tight chest …oh yeah, don’t forget the heaving headache.

Lol, I know, as ridiculous as it sounds to deal with this is pretty commonplace. I’d say this happens at least once a day, sometimes I can go a few days without one, but then some days it happens all day long. Those are my hellish CF day’s…spent in the bedroom, or bathroom. Moreover, I usually can only consume Chocolate Boost’s, and yogurt on those days, as that is all my stomach will allow. But, now I’ve got to get my appetite up enough to eat something before I try to go back to sleep…yay…the fun of CF (sarcasm), lol. Sorry, if I don’t laugh at my problems I’d be a basket case!

I wanted to share this with y’all in real time, just to give you a better glimpse into the daily CF symptom’s forced upon us, and the toll it takes on our body. Everyone who has CF knows exactly what I am feeling like right now, and I hate that. Anyway, I am gonna try to  eat a yogurt, or something, and watch some on demand shows…maybe a movie. So, I say Goodnight to y’all, and if you’re reading this I appreciate it. If you know someone with Cystic Fibrosis reach out to them, if you’re dealing with CF it’s comforting sometimes just having that friend you can call to shoot the breeze with, someone to pull you out of the messed up head state instances like tonight throw you into so violently.

Jammin Out!

Not too much is better than catching an old song you haven’t heard in a while…that nostalgic feel comes rolling in almost pulling you back into that time totally.

I have been trying to add some different stuff to my blog to reach a wider variety of readers, pull them in hopefully then they’ll see my other stuff, and start following my site or Twitter, etc. So, today I’m sitting here going through old Facebook posts, looking at old pictures, and jamming out to tunes back from college days, and there isn’t much of a better feeling than getting into that groove. I love it!

I had a rough couple of days there with the CF, but am feeling a bit better today, and in a bit I’ll have to go run some errands. Catch up on the pile of shit on my overloaded plate, and try to taper back on the overflow of procrastinated chores of daily life with or without CF…but, I revel in these days, the days that allow me to look back at the previous and realize I do have GOOD days, and they aren’t all BAD…it’s hard to pull yourself out of the moment when a day is bad or when stuff isn’t going your way. However, when those good ones roll around it makes you appreciate them that much more. So, if you’re having a bad day, week, month…just try to keep your head up and press on. Hopefully at some point it will ease up and allow you to enjoy the good, but appreciate the bad for allowing your to notice the good. And, with that I am going to go try to knock out some of these errands before the other shoe drops…lol. Hope everyone had/has a good day!

CF Life tip of the day: pick up a pack of sterile rubber gloves next time you are at the pharmacy…put a couple in baggies and keep some in your car, your favorite jacket, etc. The next time you have to pump gas, or use a public restroom, slip the gloves on and cut down on the chance that you’ll get some kind of nasty bacteria, or germs from stuff. Especially because people are so ignorant about good hygiene. It’s a huge stress reliever when you need to do something and there the gloves are…less worry!

CF Life Body Hack # 3: Feeling tired, or just out of it, having been sick the previous day? Go get a hot shave from a male hair salon. They will hot towel your face, head, and neck, use a straight razor with all the accoutrements of the trade…it is amazing how much a hot straight razor shave will improve your mood. Also, good grooming habits tend to make you feel better anytime. Enjoy!

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.

 

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.

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!