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!

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!

 

 

 

 

 

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.