Stay Positive

So, lately I’ve been having a rough time both physically with the Cystic Fibrosis, and also a little bit mentally.

Physically, I’ve been having a rough time with the allergy season, It has sapped my energy, and made my face itchy, watery, and red…lol…it sucks…

Mentally, I’m having a bit of trouble, I’m alone a lot and I’m struggling to figure out what to do with my downtime, especially when I don’t have energy to do shit…

Making yourself do things when you don’t feel good is one thing, but when you feel extra shitty, its damn near impossible, and when moving is taxing it takes it to a whole new level.

I see and hear about what people are doing and it bums me out…I try my hardest to stay positive, which is very hard to do, and 5 years ago I would’ve had a serious breakdown by now, probably gone on a bender and paid for it for several months afterwards. Now, I have gotten my shit together since then, but mentally it is never going to be easy to go through life with CF.

I am always going to have to be strong mentally, not being rock solid will lead to my demise, and not metaphorically, but literally…it definitely takes a toll on you knowing things will NEVER get easier, in fact they’ll only get harder.

It is a mind f#ck and then some…but, I am strong, and I will stay positive, and I will make it…

I have made the resolve of my inner strength being solid, I have an iron will, and it cant be broken. Maybe temporarily damaged, but nothing will ever break me totally again, ever. To tell the truth knowing that is the only thing that keeps me going…is that I wont break, life will have to get rid of me to break me, and even then I hope to leave behind a legacy that outlasts my time here physically.

With that I’m gonna go listen to some rap, and get in the mood to dominate when I wake up tomorrow!! Do what you gotta do…

 

Feeling better!

So, if you’re following any of my posts you know I had a small breakdown just a day ago…well, like I said in that post they don’t last too long  and I already feel a good bit better.

But, it did a number on me that day, and night…so much so that I had to dip into my reserve of anxiety meds which I don’t like to take a lot for that particular reason, when I need them I NEED them to work…lol. and the less you take them the better they work when you need them.

With something like Cystic Fibrosis this kind of thing is unavoidable, it happens incrementally thought the week, you have ups and downs, but some days are literally just hell on earth type days, that one was falling into that category for sure!

Anyways, I handled it as best I could, and shared it with y’all to show you how easily it is to go from “good” to “bad” with something like CF and not in a physical way (well yes physically) but that time more so mentally…So, I took my meds, meditated, then hooked up to some video games to blow some steam off…it worked, by the time late night/early morning rolled around I was able to sleep a bit, and today am doing much better!

So, with that I am going to go watch some basketball, as Northwestern made history today making it into and then winning their first NCAA tournament, something 78 years in the making. But, that and a couple of other games totally screwed my bracket up…oh well, that’s “March Madness” for you…lol.

Hopefully everyone has a good rest of the week, and if you’re watching these games have as much fun as I do getting into them!

 

 

 

The Plunge…this sucks!

Well, I’ve kind of been waiting for this to happen for a few days since I’ve been naturally feeling not terrible, and have been enjoying watching some really good basketball games…I’ve been elated, enjoying the natural high of life. But…waiting for the other shoe to drop.

It just hit me like a ton of bricks, as I am sitting here watching some game recaps, I feel that nasty pit of the stomach feeling start to churn, it is angst, dread, fear, loneliness, just discomfort on a deep psychological level. The other side of the effect of waiting for the other shoe to drop type feeling, well it has dropped. And it is ripping my stomach apart as I try to control it.

I literally just made a post probably less than an hour ago, and I wasn’t in this mood. I know all people experience this kind of thing, just maybe not in this amplified of an impact. Having Cystic Fibrosis I am used to dealing with discomfort both physically and mentally, and I have a pretty well developed sense of how it is impacting me and how I can keep it in check. Having said that, I also have NO control sometimes, and this is one of those times.

I am sitting here at 12:30 am, I’m alone, and uncomfortable…in a terrible way. These are the times I anticipate with fear, almost more than anything else. The feeling of dread fills my mind, and my stomach in trying to rip its way out of my body to find an escape.

I usually wouldn’t share this type of stuff, I wasn’t raised to complain, but I’m trying to be as real as possible and make this site/blog raw, real, and not sugar coated…I was raised well, and raised with the idea that you don’t complain unless you need to, “don’t cry wolf” I guess would be the best way to describe my discipline in this area. There are times I need help, physically, and even mentally…but, if I always say how crappy I feel I would be complaining almost constantly and more so when it gets bad, but this is one of those times. So,where I usually just suffer in silence as to not create stress and tension among the ones I love, I am using this as my outlet. Trying to share my pain in an attempt to understand it better myself, but also to show how much of an impact something like CF has one people aside from the physical affects.

Obviously, this will subside at some point…but I don’t know when. So, until then I will try to distract myself with meditation, video games, TV, anything to take my mind off of this for just enough time for it to fall to the back burner in my already scrambled brain. As I said I don’t usually share this stuff because it Is my shit to deal with, I am trying to be more open, and hopefully shed some light on what impact an invisible illness has on the person, like I said, aside from the physical impact.

So, with that I am off to distract myself, I apologize if this post seems to just be a long winded complaint. That wasn’t really my intention, but I think it was the outcome.

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…

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!

Good Morning…kind of.

So, it’s only 10:30 and I’ve been up for about an hour. This sucks, lol, and after last night’s attack I kind of wanted to get more than 3-4 hours of sleep, but obviously that’s not happening. Well, this is pretty routine like I said in my last post…so, I’m sitting here enjoying a STRONG cup of coffee, and listening to some Dave. The fact that I’m used to this is telling especially since I just deal with it like any other day, while trying not to allow previous stress to creep into me after I’ve bypassed whatever is stressing me out…like an attack in the middle of the night.

Well, it is early and I’m still kind of trying to get my bearings, and shake off being pretty exhausted. On a positive note it feels like a did 1,000 crunches last night, and that’s cool…I guess…haha, ahhh! So, I’ll probably mess around until I’m awake enough to get some food in me, and rinse off the soreness in a scalding hot shower. Funny what the human body can become accustom to after it happens enough.

I’ll probably do another post this afternoon/evening sometime. So, I hope everyone has a great day. Again, if you’re following these blog posts I very much appreciate it. Spreading some knowledge about the unseen aspects of this invisible illness called Cystic Fibrosis is very important to me, and your help means a lot.

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.