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.

 

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Interesting

It’s late Thursday evening, and I am finishing up on some stuff I had to do today, and I just signed onto my social media where I noticed a couple of comments, on some posts I have recently made.

The posts were nothing crazy, just observations on the political landscape, the irony of said landscape, and the hypocrisy with which so many people operate these days.

So in particular there was a post about health insurance, which if you have read any of my previous posts, you know I have Cystic Fibrosis, and have not been able to qualify, in any way, for decent/affordable coverage in several years.

However, strangely since Trump has become POTUS, I have received several phone calls, and even a positive response to some applications I sent in for assistance, and health insurance, where before I was basically just ignored, or immediately turned down.

But, like I said in the past few weeks, after my latest attempt to get some sort of coverage I was actually contacted by a few companies and even a representative who had been assigned my “case.”

So, I made the connection that maybe this administration has put a fire under the asses of some of these tit suckling government workers who care not ONE BIT about you as is obvious by the way they treat you when you call, or go in person to their department’s brick and mortar building.

Now, having recently signed on to my social media I am getting all kinds of weird responses to my comments, including but not limited to disbelief of my condition, distrust in my reason for applying for help, and even veiled threats towards me/ negative wishes about my health.

Sadly, I am kind of used to seeing this stuff, but have never been the grunt of said negativity…and its very disconcerting, but more so disappointing. I am the kind of person who doesn’t wish ill on anyone, even those with whom I disagree, but generally I wish everyone well, and hope that they don’t have the same kinds of issued just living their lives as I do, on a daily basis.

We live in a world where Rapper’s and “movie star’s” are put on an almost godly pedestal, setting them up in many young people’s eye as something to strive to be…and at the same time we as a society criticize people like Tim Tebow who are REAL role models in similar societal statuses (as far as money and fame go). It is just pathetic…and disheartening to watch people who are actually trying to make our country and the world a better place, get vilified. Meanwhile, the most narcissistic, hedonistic, and many times criminal figures in our society are basically given a free pass to do, say, and be poor excuses for role models, and generally not good people.

Anyways, I guess my point to this post is we should re-evaluate the way we categorize people in our society, and the way we portray them to our young impressionable minds. It is sad to think kids growing up would grow up thinking its ok to treat fellow American’s so badly, and not have it even be a problem. We should be treating each other with respect, even if we disagree politically, socially, culturally, or whatever.

If we just treated each other better, there wouldn’t be some much division, we would get much more accomplished because we could work together better, and we wouldn’t have so many people who feel ostracized for reason’s out of their hands, or based on something they had little control over.

This post is kind of all over the place, so sorry…rant over…lol. Hopefully everyone has a good rest of the week, and into the weekend as well.

 

 

Political BULLSHIT!

So, I had to post this because I’m really pissed off, this political landscape we live in is total nonsense.

Today I had a lifelong friend tell me for a reason he COULDN’T EXPLAIN that because I supported a certain candidate over another that our friendship  over the last 15 years meant nothing to him, that I was scum, and a pathetic racist.

First off that’s total bullshit, as I know we have literally the same political identity and views, and have for many years..as far back as I can remember.

His reasoning to me was so off base, I could tell he was literally just reverberating what he had heard on CNN, or MSNBC…

Now, I’m not a judgmental person at all, I love America for that reason…we can disagree. I may not agree with your political views but i’ll defend to my last breath your freedom to have those views and voice them.

But, now we live in a world where differences are such a problem people are actually losing lifelong friends because of it, I read an article the other day that a 60 year old couple who had been married for over 30 years had had a political discussion at a lunch with friends, and the husband voiced his support for a candidate that his wife didn’t agree with, she then voiced to him that she wanted to divorce him, and not be considered his wife anymore…WTF??

This isn’t what America is about, this is absolute nonsense, and the majority of the hypocritical irony is coming from people who claim almost incessantly that they are TOLERANT, INCLUSIVE, and stand on the platform of EQUALITY…I call horseshit, bullshit, any kind of shit you can think of! Get off your high horse and just say what you mean, “I don’t like you because of your views.”

Anyways, I had to get that off my chest, as it was making me almost lose my mind. Think what you want, do what you want, believe what you want, sleep with who you want to…as long as you’re not hurting someone else in your attempt to do said things we have NO problem. It’s called freedom. This is the America we lived in until just a few years ago, and now it’s at a level of insanity. It makes literally ZERO sense.

Rant over…enjoy your night, and have a nice Sunday.

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.

Routine Extraction

Wake up: 8:30 am (feeling pretty good today)

Make some tea and have an orange and a couple of doughnuts: 9:30 am (not having too much trouble today, must be one of the good ones.)

Take the dog for a walk and stretch/get some fresh air: 10:15 am-11:00 am (nice weather finally)

11:15 am – 2:00 pm: bathroom routine, and shower (extra long shower enjoying the hot water after a long walk)

2:15 pm: make some lunch, and watch a bit of TV (Tuna sandwich and chicken noodle soup, and this new show called “Taboo” which I must say is pretty cool, weird but cool)

4:00 pm: making some phone calls, handling my daily routine of household stuff, cleaning etc. (reveling in the fact that today isn’t really too rough)

5:00 pm: got to talk to my Dad for a good little while (something I don’t get to do too often)

Really having a pretty nice, and normal day…enjoying the weather and playing with my dog, as well as catching up on some stuff I’ve been putting off…can’t complain.

And then my luck rears it’s head and the routine turns to shit!…As I am eating a late afternoon snack I take a bite of seafood pasta, suddenly I feel it. I bite down on a piece of shell, and CRUNCH…one of my teeth breaks…son of a bitch! I run to the bathroom and start examining my mouth, rinsing with mouthwash and getting out my floss sticks to make sure everything is ok. It isn’t…I realize I have broken my back molar and a rather large piece of the side has come off. F@CK ME!! This is just my luck, as I am taking the nice day for granted I get a visit from reality…

So, with CF I have a serious vitamin deficiency, mainly ADEK. One of the thing’s I have come to accept about the Cystic Fibrosis is this: weak bones, weak joints, rapid aging of the body and it’s components. And, just as I am eating my snack it comes back onto me like a ton of bricks…I will be dealing with this kind of bullshit for the rest of my life.

Now, tomorrow when I wake up I will have to call the dentist, and be prepared to be told “you need an extraction” being that the last time I had a serious dental emergency that is what I needed. I am expecting to have a pretty crappy couple of week waiting for an appointment, and trying to figure out how I am going to pay for what I hope is a routine procedure, but due to the nature of CF and the poor health of my body in general, I am expecting the worst. “William you need an extraction of your back right molar, we don’t have any opening for a month, and your dental insurance doesn’t cover this kind of stuff, it will cost around $1500.00.”

You get used to dealing with problems on a regular basis with something like CF, and this is definitely one of the more jarring and miserable ones, as my body deteriorates at an expedited pace. So, here we go…ill find out what is going to come next tomorrow when I call my dentist. FML!

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.

Affording Cystic Fibrosis

It’s about 4pm on Thursday, and I’m sitting here trying to figure out what to do with myself…I’m having one of those days, CF is particularly rough but some days are much worse than others. Today is one of those days, I woke up hacking, and haven’t been able to catch my breath since. So, in trying to distract myself I was calculating some of my finances for the past couple of months, and months to come. I’ve figured out I’m basically f#cked, and it’s hitting me pretty hard. Strangely I don’t qualify for certain health insurance or “aid” programs, literally none of them. I applied in September the last time and got a prompt letter back denying any financial help. I’m super frustrated because CF is an invisible illness, and it’s recognition is sparse. Anyways, as of now I’m only a small amount behind, and thinking of every possible way I can to try to catch up but I’m definitely “behind the 8-ball.” Since a few years ago it’s been a game of cat and mouse trying to get these government agencies who are supposed to be there to help people like me to even respond to my requests for further information on denial of aid. But, if I keep this train of thought it is going to ruin my whole day, so I’m going to quit my complaining now, and try to do something positive to keep my mind occupied.

Hope everyone is having a bit of a better day than I am, thank goodness the weekend is almost here…ahhh.

Back to normal “hacking” my health.

It’s about 3:30 pm and I’m sitting here having just finished up some work, don’t really have anything else that’s super pressing to do today so I’m going to blog a bit. I want to start this blog post out by asking a couple of questions…anybody who so desires can respond. It would be appreciated so maybe I can tailor posts to a certain request for knowledge, experiences, information, etc.

So, after the holidays are over everyone has those couple of weeks where you’re stuck in-between being in a holiday type mood, and moving on to get back to “normal” life. At least that’s where I’ve been and may even still be a bit…since I love this time of year so much I tend to drag is out as long as I can. Being that it’s over however I have been having some weird stress and anxiety the past several days, and I’m not too sure why…? I woke up a couple days ago and the CF crap had weaseled its way back into my main thought process. It sucks, but with that there comes a bit of an ability to view things from a distant perspective. Meaning even though it sucks I can kind of step back and review how I am doing before, during, and after the holidays, and why. I’ve been waking up at 6-7am again as opposed to being able to sleep comfortably until 9-10am, I don’t like it but it gets me back into my regular routine. If I had my way society in general wouldn’t get moving until 10-11am and go until later in the day, but that’s just my personal preference.

Here are some of the things I’ve re-instituted into my daily “body/health hacks” some may be helpful to anyone and others may only be applicable to people who deal with terminal illnesses like Cystic Fibrosis, diabetes, Crohn’s, etc…so, body/health hacks: when I first wake up I cough like crazy so I keep two drinks on my bedside table, 1 is a bottle of water(a must) and the second varies, sometimes its tea, sometimes its coffee, so basically something with minimal sugar or a sugar amount I can control. The reasoning being that a bit of caffeine will open up closed airways, so when you wake up in the morning all congested and clogged up

So, my day may look nothing like yours, but these things work…so try them out. It helps more than you think to be able to just pull a snack out of your bag that isn’t junk food. Or, to have a drink to hydrate with, and then one to sip on as the day goes, again something healthy as well as cheap being that it isn’t a $5.00 Starbucks, or a drink from the 7/11. All of these things not only help physically, but also mentally it’s comforting to know I won’t get hungry in traffic and have to pull over with low blood sugar. Finally, it saves me some money, as I don’t have to stop at junk food stores to refuel. These are just a couple of the many things I employ in an attempt to keep my body at a functioning level, keep myself from being hungry/thirsty, and without braking the bank, which I do just keeping up with Dr.’s appointments. All in all it is very helpful, and I can post more of these little tricks or “hack’s” as they are so often referred to in pop culture…They may seem inconsequential to most but when just doing your day is a rough task any little bit of relief here and there is a godsend, and enormous edge in keeping your health up to par while going through life and trying to keep on keeping on. Hopefully this helps one person figure out something they didn’t previously think of, or didn’t try before. That is the whole point of my page, and my blog, I want to be able to provide relief in situations where I didn’t have any help, or even information to go on. Enjoy the rest of your day!

Frustration with no end in sight.

It’s a couple of days before Christmas, and those “little problems” are starting to pile up and become extremely taxing. Going out to try to shop, maybe enjoy a bit of the season like a normal person seems farther and farther from sight every year. In the face of difficulty I am an extremely positive person, but the mind/body can only handle so much before it gives, that is where I seem to be right now. I try to keep my chin up and not let it bother me too much, but I have to admit this year it has become much more difficult to do the simple things. No matter what I will never give up, I’m a fighter, I will go down fighting…until my last breath…literally.

I have done a bit of Christmas shopping, and got to grab lunch/catch up with an old friend recently, and it was great. It is very much the little things that make life with CF (any terminal or lifelong illness) harder, on the flipside it’s also the little things that make it so I can keep going, for that I am extremely grateful. So, on that note I hope everyone has a very Merry Christmas, and a happy New Year!