New to Instagram

Sooo, just FYI I am like I’ve said in the past a dinosaur when it comes to social media stuff, Facebook was coming into a nationwide thing right as I was starting college, and I already had a Myspace, and had learned how to use it, finally…lol…But, I stuck with those two through college. Afterwards I just had more things to think about than keeping up with social media stuff.

Anyway, I am now on Twitter, and just got onto Instagram yesterday…so ya, I’m catching up with the times, haha.

It’s in its infancy but check it out at pikapp858…

Hope you enjoy it as its less focused on CF life and more on my daily life outside of CF.

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another late night, or early morning

Well, its almost 4:45am and I’m still awake. I dozed for a bit but my sleeping schedule has been extremely strange of late. I sleep a few hours and am awake for several, rinse and repeat…it sucks.

I have been in a very peculiar situation for the past couple of years, in that I have a better control and understanding of what my life with CF is going to look like as I get older, but it also changes slightly everyday, no days are completely predictable of even able to be planned for and it is pressuring me to figure out how to make this situation work to my benefit, or at least be able to benefit while dealing with my situation. Which is very damn hard, and not pleasant at all!

I just wrote my first blog for a few months a couple of days ago, and got a decent number of people reading It as well as a few new followers which is always a nice surprise. But, to be honest, I realize everyday more and more how much different my life is going to be than any kind of “normal” I had ever pictured as a kid and it is a bummer to say the least.

The only options I really have are “outside the box” type things, since regular places of employment either can’t accommodate my schedule, or I accidentally cough during the interview, lol…in which case I get extremely strange, albeit concerned looks, followed by: “are you ok?” or “do you cough like that all the time?” at which point I have to explain in detail what Cystic Fibrosis is, and that is isn’t contagious…and then the obligatory “thank you for coming in, we’ll let you know…” Which never happens oddly enough. I get it…I sound like someone who has been smoking since they were 2 and is probably gonna keel over the second I stand up out of the chair, haha.

Anyway, enough ranting for one day.

Ill be getting back to my daily life/body hacks posts soon, I actually have quite a few stocked up, and hopefully the tone will be a little more upbeat. So, thank you for reading and please know I welcome any questions or comments, or even suggestion…about anything. Hope everyone has a great rest of the week! Appreciate you stopping by…

-Will

It’s Been a While…

So, I haven’t posted anything to my site in a while, and sadly it was unable to be avoided. That’s one of the shittiest parts about CF if you get sick or rundown, there’s no toughing through it, you just have to endure…until its run its course.

Well, for me the past several months have absolutely SUCKED. I have had one problem after another, and rundown at its worst. So, I’ve been biding my time, and recovering as best I could.

While I couldn’t really do anything physical or even much of anything, I have been thinking about EVERYTHING a lot…and I think that’s one of the things about CF that’s strange. I’ve been told many times over my life that I have an “old soul.” And I’m guessing most CFer’s have as well. I think it’s a given when you have so much time to contemplate EVERYTHING. It forces you to “age, or grow up” faster than the average person.

Throughout my while life I’ve had older friends, I’ve dated people who are usually older than I am. And not purposefully…but, more out of a desire to have someone I can relate to better, they just so happen to be older.

So, being that the last few months have been difficult, I’ve been trying to figure out a way to accommodate life around being sick, and its not easy. I have however discovered a few things that may make it easier as I get older, if I get “older.” (not trying to be morbid, just realistic).

The Best way I can describe what I’ve been thinking about is simplicity, I need to develop my life around a simple set of needs, wants, belongings, activities, etc..

So, I have decided I want to look into the “Tiny House” movement, and find a way to work in some sort of field where I can do most of my work from home, it will probably be the only way I keep a semi-normal life…

Anyway, I have been sleeping very little and am trying to get this post up as a re-entrance into my posting schedule, as I’ve been out of the loop for so long now.

For that I do apologize, I wish it wasn’t this way, but it is…for now at least. So, to those who have read and posted in my absence I appreciate you greatly, and any new viewers I thank you for taking the time. it means a lot to me to be able to reach even the small number that I do.

Hopefully everyone has had a good summer, and enjoys the season change as much as I do…but, for now, have a good rest of the week and I’ll be posting more frequently now, hope you enjoy. Thanks again for stopping by!

Fellow CFer’s…breathe strong! And stay healthy!

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

 

Mundane Monday

Well, it’s Monday again…no more weekend relaxation for five more days. I like everyone enjoy the weekend, and especially because it allows me to reduce the amount of time management I have to do in relation to my Cystic Fibrosis treatment, timetables, diet, etc. I can relax a bit on the weekends, and do things in a more slow paced fashion.

So, when the weekend comes around I start to get less stressed in general, and the reverse happens when the new week begins. I start to get stressed out, usually late Sunday, but sometimes not until Monday. Moreover, it always focuses around how I anticipate I am going to feel, and what I am going to have to do to compensate.

I’ve reached a point in my life where most of what I do is routine, and I’m used to it…it’s just my life. But, there are those few things that pop in and out of my routine, that throw a wrench into the gears. Some things become more pressing, some become less…creating a situation where I have to prioritize needs, instead of wants. In prioritizing needs things become extremely convoluted and, unless you’ve experienced it in such a defined way it is almost impossible to explain in a way which the average person could warp their head around.

You may be thinking to yourself I have had to prioritize needs before, and before you start assuming that I’m just making a mountain out of a molehill i’ll explain further. When I say prioritizing needs I don’t mean deciding between needing to get new shoes, or a new belt…or  deciding between needing to get a new piece of furniture or a new TV…or even something more personal like deciding between needing to fulfill a task given to you at work, or one given to you by a family member or close friend.

No, when I say prioritizing needs I mean deciding between needing to go to a Dr. appointment, or getting nutritional supplements…or deicing between refilling a prescription, or making sure you have enough food for the week. Maybe one of the worst of all deciding between what health information to share with family or friends, and what to keep to yourself…for fear of creating more stress or angst among those you love.

There are so many problems that we as CFer’s, anyone with a terminal, or lifelong illness face…some of them are easily adaptable, and some are so disconcerting that we would rather keep them bottled up than share, and have the possibility of allowing those problems to affect the ones we cherish. That is one of the harder parts of CF, it isn’t the coughing up blood, or aching all over, or even being stuck in the bathroom all day. It is watching those around you and feeling their pain as they look on helplessly. It is deciding between several things you have to have, and choosing between the MOST pressing of the issues on your plate to focus on. Making those choices of which need is more important, deciding what issues to keep to yourself, or even trying to shield the ones you love from your spilled over problems can sometimes be more taxing than any of the physical symptoms combined.

I guess that is the kind of problems I anticipate about the new week…what will pop up that I have to set other problems aside to focus on now? How will I approach the unapproachable amount of shit on my plate? And, how will I protect my loved ones from feeling, or even seeing my pain? They are questions I have yet to find answers to and I don’t think I ever will…

So, until I do figure out how to be “Superman” I will continue to do my best to put on a smile, move forward with my head up, but make sure I keep my chin down to avoid the unavoidable blows life throws at me (little martial arts pun). I will take things in stride, and try to keep my cool in all the shitty situations I am faced with, because that is what I have to do to keep my sanity, and to make sure the problems I have don’t become the problems of everyone around me, admittedly this doesn’t always work, but I will try regardless. I will smile, and laugh no matter how much of a terrible day I’ve had, and how badly I feel, because that’s all I have at times…is my inner strength, my will, and my ability to deal with the pain all day, but still smile.

 

Black Mask…Satisfying.

Just a quick post, more of an observational inquiry about this whole Black Mask thing that’s been going around…

I know women have created all sorts of stuff like this, or similar to this…in the ability it has to clean out pores. But, these videos are extremely satisfying to me, and my OCD…lol

I have always been the person who upon seeing a white head, or black head WANT IT GONE! And will scrub, rub, and wash my face to try to accomplish that perfect cleanliness.

It never works 100% or even close, you can always find that group you missed or one more in the spot you assumed you had taken care of.

So, seeing the way this charcoal (I think) mask works is extremely satisfying to my brain, not I am pretty OCD in general, guess that’s from years of having to be super meticulous in having Cystic Fibrosis. Always making sure to miss none of the 30+ pills I take day, and that everything in my area is clean almost to the point of being sterile…lol.

Anyways, do other people get the same satisfaction watching these masks, especially when they are pulled off slowly, as I do? Just a weird thought, that led to a but of curiosity.

Hopefully everyone had a good weekend, and has a great rest of the week!

Getting back into Jiu-Jitsu

So, I have been feeling up and down recently having both good stretches, and bad stretches…back and forth.

I have decided to start doing everything I can do to get my physical health back to where I would like it to be. And I’m not going to take no from my body for an answer…so I am going to go up and speak to my of jiu-jitsu coach and see about getting re-enrolled in some classes. And I’m excited, to say the least…

I have decided in an attempt to secure some of the stuff I’ve recently been discussion in my blog that this is the best course of action, to build myself up to appoint where I am a viable option to corporations.

Anyways, hopefully within the next few weeks, I will have some of this stuff hashed out and figured out totally!

I will keep you updated as I plan to bring you along on my journey!

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!

Struggling

Its about 1pm on Friday, and I’m struggling pretty badly. Haven’t been feeling too good this week at all, I’m definitely having a rough week to say the least. Just a couple of the things that have been ravaging me this week:

  • Cold –> hot –> cold –> hot –> Freezing…this weather where I live is strange to say the least. When it goes from hot to cold like this, especially this often, my body has to adjust and readjust, and it makes things incredibly hard.
  •  I had some kind of food poisoning, or at the very least a nasty stomach bug. Been in the bathroom a lot. When I’m not, I’m in bed trying to keep myself in the absolute    “right position” so my body can relax and give my abdomen a break.
  • Then there’s the outside stressors that have added onto the joy of this week like getting a notice that my car insurance is going up, and I still can’t find a reasonably priced health insurance.
  • Also, had a death in the family…my Grandmother’s brother died a few days ago, and when people around me die it makes me wonder how I am outliving these people who die for no reason, meanwhile I’m sitting here struggling to breathe, and I’m still alive. Just a weird sort of mind job I’d rather go without.

So, ya that’s what my week has been, riding the struggle bus for sure, but not because of a hangover or anything where I had too much fun. Just the regular old BS that having a chronic illness brings to the table. That’s also the reason I haven’t blogged in several days.

But, anyways…I am finally starting to get a little relaxation and some of these additional symptoms are going away. While I can I am going to try to get some stuff I need to get done handled. Hopefully everyone had/has a good week, and now weekend. Ill try to get up another post a little quicker next time. Hopefully today is the last day of this extra fun! Lol.

Sorry, I can barely think straight, so no CF tips, or body hacks on this post. I’ll add one the next time for sure.