The Return…

So, it has been a pretty long time since I’ve posted anything, I haven’t been doing too well health wise, but trying to keep my spirits up.

I had some really bad CF rundown, and then a week ago I had a broken tooth extracted…that’s 3 now in less than 2 years, ughhh!

But, I don’t want to let this blog go stagnant, however I have to admit it has been low on my list of priorities, especially being in pain and not being able to take pain medicine…I don’t know if I’ve mentioned this before, but I have had a problem with pain meds in the past, doctors will fuck you up if you’re not careful…

Anyways, I’m doing a good bit better now, still not totally healed up, but on my way for sure…hopefully!?

After my Mollie girl left us, I had a pretty rough couple of weeks, then an extraction and now I’m finally starting to come out the other side, but its a bitch to say the least.

However, I am a strong willed person and I wont let things defeat me anymore, besides killing me I’m not gonna stop. So, good…but, kind of morbid I know, lol…

Well, I just wanted to get back into the swing of things and get y’all updated on my situation…im not dead…lol! I hope everyone has had a good spring break, Easter, or anything you’ve been up to really…

And finally, I will be posting regularly again, and am actually thinking about upgrading my site subscription for some different benefits and more personalization, maybe starting to branch out a bit and see how it goes…so wish me luck!

Thanks for reading and hope everyone is doing well!

– Will

 

Almost done…

I have been working really hard to get this page setup exactly how I want it to be and to function how I want it to work. So, its been a few days since I’ve made a blog post, but several days since I’ve blogged regularly…so I’m back…

I am doing pretty well considering the amount of stress I’ve been under, after this is over hopefully I will be able to get the rest of the stuff I want to do set up.

However, right now I am sitting here messing around on the site, but more so I am watching this new show called “Legion” it’s part of the X-men story, and its pretty badass, but it’s also pretty freaking crazy!

There are only 4 episodes so far,  and I’m on number 3 right now, and this is one of those shows that you sometimes have to watch an episode twice to figure out what the hell was going on, very Inception-ish/a beautiful mind….what’s real? What’s false? But, it makes it a lot of fun to watch, that’s for sure.

So that’s basically what I’ve been doing for the past couple of hours, lol…CF life for you. You spend all day and night working in and on a computer not getting much sleep. Then you catch up and recoup on rest, and stuff while binge watching shows on TV. I’m used to it so I can get everything set up to where I can be productive while just sitting around most of the time. I know kind of a catch 22…but its how I’ve always had to do things so nothing new to me!

Anyways, I wanted to also say I have moved the CF Life body hacks, and daily tips to their own drop down menu on the home-page so they’re easier to find, as I’m trying to make this while site easier to navigate in general.

So, that’s all I have for right now, I’m probably gonna go make some leftovers and watch some more cool TV shows, hope everyone has/had a good weekend. Thanks for reading!

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…

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!