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…

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.

Political BULLSHIT!

So, I had to post this because I’m really pissed off, this political landscape we live in is total nonsense.

Today I had a lifelong friend tell me for a reason he COULDN’T EXPLAIN that because I supported a certain candidate over another that our friendship  over the last 15 years meant nothing to him, that I was scum, and a pathetic racist.

First off that’s total bullshit, as I know we have literally the same political identity and views, and have for many years..as far back as I can remember.

His reasoning to me was so off base, I could tell he was literally just reverberating what he had heard on CNN, or MSNBC…

Now, I’m not a judgmental person at all, I love America for that reason…we can disagree. I may not agree with your political views but i’ll defend to my last breath your freedom to have those views and voice them.

But, now we live in a world where differences are such a problem people are actually losing lifelong friends because of it, I read an article the other day that a 60 year old couple who had been married for over 30 years had had a political discussion at a lunch with friends, and the husband voiced his support for a candidate that his wife didn’t agree with, she then voiced to him that she wanted to divorce him, and not be considered his wife anymore…WTF??

This isn’t what America is about, this is absolute nonsense, and the majority of the hypocritical irony is coming from people who claim almost incessantly that they are TOLERANT, INCLUSIVE, and stand on the platform of EQUALITY…I call horseshit, bullshit, any kind of shit you can think of! Get off your high horse and just say what you mean, “I don’t like you because of your views.”

Anyways, I had to get that off my chest, as it was making me almost lose my mind. Think what you want, do what you want, believe what you want, sleep with who you want to…as long as you’re not hurting someone else in your attempt to do said things we have NO problem. It’s called freedom. This is the America we lived in until just a few years ago, and now it’s at a level of insanity. It makes literally ZERO sense.

Rant over…enjoy your night, and have a nice Sunday.

Spoiled little lady

Well, here we are it’s Saturday evening, I am feeling much better after that spat of CF rundown I dealt with for several weeks.  YES!!

I woke up today, and checked my phone for messages, emails, missed calls, etc. I went through the emails, responded to the texts, and called back the one person who I needed to call back before the week.

Then I got up and did my morning routine, had my bottle of water with my 10 +pills, and a few doughnuts, with my coffee then a yogurt. Yum…lol.

After I finished that up I took my dog Mollie out, and we frolicked around a bit she loves this weather, not too hot not too cold, and super windy. Then we came in and got a treat for the spoiled little lady. She is such a sweetie, and she brings me so much joy and happiness when I am down, and even lifts me up further than I am when I’m feeling good.

So, we came in and I went to the bathroom, and grabbed a quick shower, and got dressed.

After I had a few mins to relax after all of my morning routine, which included coughing up a lung, luckily I didn’t puke today…lol…yay! So, sometimes I don’t even think about that stuff but want to include it on my blog so y’all can see what days are like for me. But, often I forget because I’m used to it…it’s an everyday thing. So after about 30-45 mins I am good to go.

I flipped off my music, nd turned on my TV, because its Saturday which means College Basketball all day! So I put my DVR on and went to make some snacks, drinks, etc.

I made some vanilla cinnamon spiced tea, and another coffee, as well as a nice glass of milk, to go with the peanut butter/honey sandwich, crackers, and chicken noodle soup I whipped up.

So I brought it all up to my room, and started in the games…going through the ones I wanted to watch and skipping the ones I wasn’t to fond of or that better ones were on instead at the same time. Meanwhile, munching on the goodies I had prepared after my shower.

Well, now it is about 645pm and I’m still going on the basketball games, but I also realized that Lord of the Rings is on…the new ones…so I flipped over to the basketball games so I could DVR the 3 LOTR movies instead.

Now, I’m waiting until I have those backed up enough that I can fast forward through the commercials (I hate commercials…lol) and am finished up my tea, and talking with my family about what were going to do for dinner…thinking about a mini Thanksgiving dinner, one of my favorites!

Anyways, that’s how my Saturday post CF rundown is going and I hope all of yall’s are going well also, as I don’t get much time where I feel this good, I wanted to write and show y’all that I’m not always downtrodden…I am sometimes very uplifted and fun, who knew? Haha, sometimes I have to force myself to remember how much fun I used to be, and doing so brings it to the surface a bit more.

But, I am going to go enjoy the rest of my day, probably snack a bit more before dinner, and maybe even have an adult beverage in a bit, especially if we have turkey for dinner, it makes me feel in Holiday-ish mood. Sooo, everyone have a great rest of the weekend, enjoy your family and friends, and don’t forget to reach out to someone if you know they are going through a tough time, as call from a buddy or “bff” can really lift someone’s spirits and not expecting a call and getting one makes it that much more appreciated, even if they forget to say so…

LOL, my little lady is sitting here laying on my feet, she obviously want to go out again, and since its such a beautiful day I will make a drink and go sit outseid with her until she gets bored, then we will come back in have a treat, “rinse and repeat.” Love this little goofball!! I’m out, thanks for reading…

High and Low

I just recently got over a pretty bad bout of CF rundown, and I noticed something that I’ve thought about a lot over the past several years. I have a lot of variance between high’s and low’s in my life. So much so that I’m used to it to the point where its just normal to me. I know everyone gets used to their life as “normal” and I guess that’s part of my point, it’s strange what we can become used to…

I know people who are used to drinking everyday until they pass out, I know people who don’t drink at all and only do hard drugs, I also know people who have had 3 kids since high school, and all of them are used to their lives. It’s just their normal, and that’s fine, no judgment here…I’m not a judgmental person. But, it does make you think about what things in your life are just your normal and how easily you can get used to that stuff.

I have been “sick” since I was 3, when I was diagnosed with Cystic Fibrosis. Everyday since then I have taken 20-40 pills, done several breathing treatments, and had very specific dietary restrictions, and requirements…depending on my current health situation that stuff can vary and fluctuate. But, I see how other people live and they don’t have to do this stuff, when I noticed the difference at a young age I realized my normal was different but didn’t really have to think about that as an indefinite life path until around the beginning of highschool. That’s when it started to affect how I thought about things and how I approached things. Then college rolled around and I tried to push that stuff to the back of my mind, and “hide” my CF with more medication, and things that wouldn’t be considered medicine, but more “self-medication.”

As the time in college passed I slowly became a little more aware of how different my life was going to end up as compared to my friends, classmates, and fraternity brother’s. I realized they could whenever they chose change their life path and do something different, but I was always going to have CF, nothing I could do would change that.

Now, I’m pushing 30…and I sit up at night and wonder what would be my life if I didn’t have CF, what would I be doing and where would I be right now? Its a question that really messes with me sometimes, other times I handle it well. I’m sometimes referred to as a morbid person, but I’m not really, I just have had to come to terms with death from a young age. Which allows me not only to look at things differently, but look at life itself in a way that most people don’t get to ever. I sometimes find myself classifying it as a blessing but other times I classify it as a curse. I definitely have an “old soul” as people so often say, but people don’t realize its been aged more by my life and health circumstances until they really get to know me.

Anyways, I’ve been in a pretty bad low for the past several weeks, maybe a bit longer, and can tell I am coming out of it, but I’m still in it enough to have the vantage point that kind of messes with my head. I don’t want to be sick…it sucks. I don’t want to have all of this extra shit to do all of the time, but I do, and it will never change. I just have to deal with it the best I can and so that is what I will do. So, having said that I realize why peoples normal is different, but I envy those who can change their normal…because I can’t…and I will never be able to.

CF Rundown (Cystic Fibrosis)

Here we are again, it’s 3:15 in the morning and I’m up, just had a pretty bad coughing spasm, and have been feeling real crappy. One of the things that most people don’t know about CF unless you have it, or have experienced it first-hand, is called CF rundown. It’s pretty self explanatory…so every so often we CFer’s get rundown from the constant state of being sick. From all of the coughing, the malnutrition, the over worked and underutilized muscles. All of this comes together in this horrible set of symptoms that is referred to as CF rundown.

Basically, it requires that we slow down, amp up the meds, sleep and eat as much as possible, and rest in-between. I know it seems like its an overkill of rest and refraining from activity and that true, it is. But, that’s the only way to get rid of this. Relax, eat, drink as much fluid as possible, don’t strain to do things, and don’t force yourself into activities that aren’t absolutely necessary.

The shitty part of rundown is there is no kind of way to tell how long it will last. It can last a couple of days, or a couple of months, that’s the part that really does a mind job on you, waking up everyday knowing you are going to have x,y,z problems is one thing. But, then adding on being super tired, feeling hot and cold simultaneously, and not being able to do the already paired down set of activities we have in our lives really is a bitch.

I remember back in college, when I got this I’d pop into the health center, get some antibiotics and some pain killers and be back at it, but when you have several months where you show up with symptom’s, and keep getting prescribed things like pain meds, it can cause real problems: physical dependence or even addiction, but that’s a whole different can of worms for another post. So, back to the health center, their job is to get you back into class asap without endangering other students health…so, the combo of antibiotics to kill infection, and pain meds to make the hectic life of a college student who isn’t feeling well manageable is really one of the best balances of safety and pushing it slightly. And 95% of the time that was all that was required. Mind you this was back in college, my health was in general better, and I wasn’t pushing 30.

Fast forward 10+ years, and here I am, its 330 am and I don’t have the ability to take pain meds to be able to stop coughing and fall asleep, I don’t have antibiotics right now, and since I frequently am on a set of antibiotics for a plethora of other reasons, the less I can be taking them the better.

So, things like rundown get dealt with by: eating more, drinking lots of fluids, sleeping as much as possible, taking extra ibuprofen, using showers to keep the shivers or sweats at bay, getting more fresh air than just the normal daily routine would involve, amping up the treatments, and any other little tricks that don’t involve adding a bunch of unnecessary meds onto an already pile of pills we consume in general, on a regular day.

It’s kind of funny with CF you learn little things over the years, I probably know more about meds than most of the doctors I see, and especially meds I have taken before, you have to. Also, how they interact with my body in particular. Every time I get prescribed something, before I will even consider putting it in my body, I do an insane amount of research, and find out everything I can about it, factual and anecdotal…including other people’s experience with said medicine, the side effects listed on the label, its interaction with certain foods or other meds, all of that comes into play. Then I will take it, but if a few days in I realize the pros don’t outweigh the cons I stop taking it, now this doesn’t include things like antibiotics because it’s not healthy to start antibiotics and then stop them. As, your body will start to build up a resistance to that kind of medicine, and since we need it to work as best it can we can’t afford to give it an edge by already having a bit of resistance to the strain of infection it’s trying to fight. It’s a very thin line you have to walk, and it is a delicate balance of knowledge, trust in the people around you, and knowing your body extremely well.

Dealing with Cystic Fibrosis, or other terminal, or even just long-term illnesses is a very volatile situation, it requires a lot of patience, and a strong positive mental outlook. If you don’t learn to develop those qualities you are really in for some serious battles both physically, but maybe even more so psychologically. It can do a number on the toughest of people and it is a fickle bitch, please excuse the language, as I’m pretty fed up…lol…ahhh! So, once again hopefully this gives you a bit of insight into CF, and a small look into the life, thoughts, and experiences of someone who fights daily just to breathe.

I appreciate you taking the time to read this, and if you know someone struggling reach out to them, it’s almost 4am and id give anything to have someone to talk to right now, but everyone I know is asleep. Having someone extend an olive branch to a person in my situation makes so much difference, it’s kind of unexplainable, at least in the vocabulary I know.

Anyways, that’s all I can think of right now, and I don’t feel like writing anymore, but hopefully something good is on TV. So…with that…goodnight!

TV/Movie Binge

This past weekend, I was going through my cable box movies, and sometimes for a day here or there, or even a weekend I notice that the “premium channels” HBO, ShowTime, Cinemax, etc. are open. Now, I watch a good bit of TV, but I’ve been trying to consciously reduce the amount of time I spend bingeing TV or movies, with CF that’s easier to say than do though.

When you’re laying up in bed after being in the bathroom for several hours, or you haven’t been able to keep food down because you’re coughing so much, TV is one of the easier ways to “escape.” Therefore, it becomes almost like a friend, you desire good TV and are mad when nothing is on or your cable provider is giving you a hard time.

Like I said though I’m kind of a frequent binge watcher, I can literally watch 2,3 movies in a row or kill an entire season of a show in 1 day and 1 night. So, it’s one of those things that is kind of like social media in that its annoying sometimes and doesn’t always go the way you would like it to, but its really nice having it when you need it.

Recently I was scrolling through my on demand options and noticed that all the premium channels were open, so I jumped right in…I watched several great movies, ones that I’ve been wanting to see but didn’t want to buy, or forgot about until I saw their title again. I watched “Legend” with Tom Hardy, AMAZING movie, right up my alley. I also watched the new “Fantastic 4,” which I found to be kind of boring and stale, especially with the cast they had available to them, it was just scripted weird and predictable. Then I watched the “Imitation Game” which I’ve seen before and is one of my favorite movies, but more so because Benedict Cumberbatch is a bad ass actor. I like this whole wave of European 25-40 year old actors that have taken over the movie scene in the past 10 or so years: Tom Hardy, Benedict Cumberbatch, Christian Bale, Gerard Butler, Daniel Craig, etc. After I had a chance to search through what was available, I also watched “Triple 9,” which was a little bit of a letdown, and not very well cut together. Finally, I watched “Burnt” with Bradley Cooper, and that wasn’t what I expected, but in a good way. It was super intense, but very good and I’m a fan of the guy from “the American’s” on FX who was basically his nemesis, or rival chef.

All in all I had a couple of days there where I was just zoned into the TV and being able to escape like that for someone like me with Cystic Fibrosis, or any terminal illness where time can almost stand still while you feel like shit, but fly by on the days when you are feeling ok, or even good is an absolutely amazing feeling Being that most of the time any escape is just a less of two evils type of thing i.e. if my stomach isn’t feeling so great today I won’t notice as vividly the ability to not be able to eat, or that I’m coughing up a bunch of nastiness. And on the flipside, if my breathing is raspy and I cant get a full breath, the last thing on my mind is how my stomach feels even though it doesn’t feel good, my preoccupation with my breathing takes the focus away from one and puts it on the other.

Funny as it is though sometimes neither matters, and I cant breath, I’m stuck in the bathroom , I’m sore and achy, I’m coughing up a lung, and bleeding out every orifice of my dysfunctional body. Those days are my “hell,” the other days are my normal, and as I get older the day that seem like hell are steadily becoming my normal and what I now consider “normal” are becoming the good ones…LOL it sucks, hands down.

So, with that being as much as I can get out of my fogged out brain today, I will say good afternoon, and hopefully everyone has a good rest of the week. Follow me on Twitter @William85887, and pass this blog along to someone you know whos going though a  hard time, maybe it will allow them to forget about their bullshit, by focusing on mine for a bit. I appreciate any who have stopped to check this site out, it means a lot to me. Feel free to message me on here or Twitter, with any questions, comments, advice, etc. I’m always open to meeting new people and hearing new, stories, ideas, or POV’s.

CF Life tip of the day: Don’t let your anger or frustration with your situation dictate how you treat people, always be kind, and if you feel like you’re going to “blow up” go close yourself in a room take 5-10 deep breaths, and try to think about the positive interaction you have had with that person. Not blowing up on someone when you don’t really mean to direct anger at them is a great feeling, and after a couple of times of harnessing in your aggression or negative feeling of any kind, it will become easier, and each time it feels a bit more satisfying.

CF Life Body Hack # 6: If you have to go somewhere and you don’t want to be coughing the whole time, which draws all kinds of weird looks, and unwanted attention, buy a pack of the most “natural” cough drops you can find. Take a few with you, and when you’re going to be around people pop one in your mouth and moisten it, but don’t keep sucking on it Then, tuck it back next to your jaw where you jaw meets your ear in between your gum and teeth. Now don’t do this all the time as stopping the natural reaction of your body coughing is not a good thing. But, if you need a hour here and there where you aren’t coughing up a lung or don’t want puke in front of a bunch of strangers this is a very good little trick.

UFC fights!

Just sitting here watching UFC fights, just watched Paul Felder whoop Ricci down, and he’s a tough dude! I used to train Jiu-jitsu and hopefully am going to get back into it soon.

As I sit here thinking about what not having CF (Cystic Fibrosis) would be like, I envy these guys, even the ones who get smashed! I wish I could be in there…I miss training everyday. My health keeps declining a bit, and so these guys are who I live vicariously through.

Anyways, I always rewind live TV back as far as it goes…like 1.5 hours, so I can fast forward through the commercials. I know kind of impatient I am (don’t know why I just worded that like Yoda…lol)  I just don’t like waiting for the commercials to be over.

So, I’m a bit behind in the show as I’m about to watch Theadoreau vs Ferriera, and I’m got to keep my eyes on this fight. Hope everyone had a good weekend, and has a good upcoming week!

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!