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.

Super Bowl, RISE UP Falcons!

This is my second blog today, but it is Friday, and it is also a couple of days away from the Super Bowl. Now, I’m not a huge NFL guy…my sport is basketball, and my addiction/hobby is Golf, lol. However, I enjoy the fact that my city’s team is going to the ship! It’s been a while, so it’s nice, especially since it is one of those things that brings us together as a group of like-minded citizens, of the same community, all pulling for the same outcome. It’s a great thing to witness the crap we see, and deal with on a daily basis put aside for the love of the game.

So, hopefully I am going to be going to a buddy’s house down in the city of Atlanta to see him for a bit, probably watch the first half with him and his wife, as well as a few close friends. Then I am going to be heading back North to around where I live where a good family friend is throwing a Super Bowl block party, and it should be a lot of fun. Also, a few of my fraternity brother’s are going to be there with their wive’s, and being that I don’t get to see them often I am very excited.

Now, I am going to give a quick few tips about doing things like this with a condition like CF, or anything that requires lots of medications and making sure certain things are present or available. So here goes: Don’t stuff yourself the day before a day when you are going to be eating and drinking a lot, you will feel less lethargic and have more energy for the big day. Wake up and turn on some good music, music that you like to jam out to. Straighten up your surrounding a bit, as returning to a nice clean house/room is very pleasant, and reduces stress. Exercise! You will be eating and drinking a lot during the day of the game, usually “junk food” type stuff, and soda’s, beer, etc. This will give your body a good start to the day, and make room for all that good grub! After you get dressed, grab an extra change of clothes, just in case you spill a drink or sit on a plate of wings. Also, get all of your stuff together and load it up, then look at it a couple of times to make sure you have all of the things you need. After that, just get yourself ready and head out. Drive carefully, as the drunk folks will be out, in high numbers. But, enjoy the day, the game, the company of good friends and family, and the experience as a whole…getting to a Super Bowl is a big deal, everyone will be elated, and this will rub off on you.

Well, that’s about it for the Super Bowl festivities, and the day in general. Like I said, I hope everyone has a great time, and gets to watch a good game of football. To my Falcon fan’s RISE UP and let’s win this thing!!

CF Life tip of the day: An empty bottle cleaned and dried out, then lined with a plastic baggy is a great way to carry a re-usable spit bottle around. When you’re almost full, zip the baggy up, and throw it away, then put in a new one. Boom! Now you have to only bring 1 bottle for a day, and off to the races…you’re good to go for the whole day. For the cost of a couple plastic baggies.

CF Life Body Hack # 4: Keep a couple of small bottles of honey around the places you spend most of your time. It is an incredible superfood, and it tastes great! Also ,it is not possible for honey to go bad, it just crystalizes. If that happens stick in next to your body in your pocket for the body heat or pop in the microwave for a few minutes, and back to liquid it goes. It can coat your throat if you cough a lot, your esophagus & stomach lining if you’re having a lot of reflux. Alongside all of that it is great for a quick healthy pick me up, just pour a couple of spoonful’s down your gullet, and go about your day. Enjoy!

Jammin Out!

Not too much is better than catching an old song you haven’t heard in a while…that nostalgic feel comes rolling in almost pulling you back into that time totally.

I have been trying to add some different stuff to my blog to reach a wider variety of readers, pull them in hopefully then they’ll see my other stuff, and start following my site or Twitter, etc. So, today I’m sitting here going through old Facebook posts, looking at old pictures, and jamming out to tunes back from college days, and there isn’t much of a better feeling than getting into that groove. I love it!

I had a rough couple of days there with the CF, but am feeling a bit better today, and in a bit I’ll have to go run some errands. Catch up on the pile of shit on my overloaded plate, and try to taper back on the overflow of procrastinated chores of daily life with or without CF…but, I revel in these days, the days that allow me to look back at the previous and realize I do have GOOD days, and they aren’t all BAD…it’s hard to pull yourself out of the moment when a day is bad or when stuff isn’t going your way. However, when those good ones roll around it makes you appreciate them that much more. So, if you’re having a bad day, week, month…just try to keep your head up and press on. Hopefully at some point it will ease up and allow you to enjoy the good, but appreciate the bad for allowing your to notice the good. And, with that I am going to go try to knock out some of these errands before the other shoe drops…lol. Hope everyone had/has a good day!

CF Life tip of the day: pick up a pack of sterile rubber gloves next time you are at the pharmacy…put a couple in baggies and keep some in your car, your favorite jacket, etc. The next time you have to pump gas, or use a public restroom, slip the gloves on and cut down on the chance that you’ll get some kind of nasty bacteria, or germs from stuff. Especially because people are so ignorant about good hygiene. It’s a huge stress reliever when you need to do something and there the gloves are…less worry!

CF Life Body Hack # 3: Feeling tired, or just out of it, having been sick the previous day? Go get a hot shave from a male hair salon. They will hot towel your face, head, and neck, use a straight razor with all the accoutrements of the trade…it is amazing how much a hot straight razor shave will improve your mood. Also, good grooming habits tend to make you feel better anytime. Enjoy!

Reluctantly, here it goes…Help me breathe??

I have been trying to figure out a way to keep my health in good standings, with Cystic Fibrosis that is a huge undertaking. Many times it seems impossible, so with extremely deep reservations I am going to do this, something I have been thinking about for a while, frankly very scared to put myself out there. However, I reached a point of no return, I have to do this to keep taking care of my CF…I need some help!

So, I have created this blog site, a YouTube channel that is in the works, a Twitter account, and am in the process of checking out other platforms. I am trying to get some corporate type sponsorship’s to assist me in the endeavor of taking care of my Cystic Fibrosis. The financial strain on my family and myself is too great, I have no other options. I am wanting to get my health back to a place where it is not controlling every aspect of my life, but with CF that’s a very touch and go situation. I basically cannot afford having CF anymore, and desperately need some assistance. I have done some research and decided the best way to go about this was a sponsorship type situation. Basically, I want to try to get sponsored to document my transformation from being extremely sick all of the time, to getting myself back to where I was 10-15 years ago. With a little luck, and a lot of help from the business/professional community at large, I am hoping people will see this and want to take action in helping to fight this nasty disease called Cystic Fibrosis, to help me breathe…

I’ve put a lot of thought into this, and it is really the only way I can put my focus on my health, as doing so requires the other things in my life to take a backseat. I am trying to find sponsorship for things like food, medication, doctor/dental expenses, living costs, transportation, and daily expenses in general. I am not usually one to ask for help, in fact most times I will suffer in silence, but this is as much for my family as it is for me. They need a break, they deserve a break, they deserve to have some help. Since I cannot fully support myself and keep my health up at the same time anymore, and being that I don’t qualify for ANY State or Federal assistance (I have been denied every time since the age of 18) I am taking this leap of faith.

This isn’t in my normal character to ask for help, like I said…I’d usually just suffer, but I feel like this is an opportunity to shed some much needed light on things that are so rare they just don’t get as much attention as something like Cancer, or diabetes. Cystic Fibrosis is a death sentence without the right course of action, and as I keep getting sicker the clock is ticking. I want to show people that there is a way to accomplish things in life that seem like unbeatable hurdles. I want to let people see that being strong is a good thing, but if you need help asking for it can bring some people, places, or things out of the woodwork that wouldn’t usually be there. Hopefully it can be done…

So, if you know anyone in America or around the world who would be willing to help a CF patient fight this battle, and try to win their way back to healthy I am asking you to share this (my) story with them. I am going to do everything I can to get myself back to being in control, and I am going to document the process of going from sick —> not so sick —> damn that guy has Cystic Fibrosis?? I want to win this battle, but I need some help to do so…and, asking that is very hard for me.

I am reluctant to ask this, I know it’s kind of a strange request. But, I want to be able to say I did EVERYTHING possible to come out on top of this. To beat the odds is not going to be easy, but with some assistance I think I can do it! Thank you for taking the time to read this, just taking the time to read it means a lot to me. Any recommendation’s, question’s, suggestion’s are welcomed with open arms and a full heart…