Stay Positive

So, lately I’ve been having a rough time both physically with the Cystic Fibrosis, and also a little bit mentally.

Physically, I’ve been having a rough time with the allergy season, It has sapped my energy, and made my face itchy, watery, and red…lol…it sucks…

Mentally, I’m having a bit of trouble, I’m alone a lot and I’m struggling to figure out what to do with my downtime, especially when I don’t have energy to do shit…

Making yourself do things when you don’t feel good is one thing, but when you feel extra shitty, its damn near impossible, and when moving is taxing it takes it to a whole new level.

I see and hear about what people are doing and it bums me out…I try my hardest to stay positive, which is very hard to do, and 5 years ago I would’ve had a serious breakdown by now, probably gone on a bender and paid for it for several months afterwards. Now, I have gotten my shit together since then, but mentally it is never going to be easy to go through life with CF.

I am always going to have to be strong mentally, not being rock solid will lead to my demise, and not metaphorically, but literally…it definitely takes a toll on you knowing things will NEVER get easier, in fact they’ll only get harder.

It is a mind f#ck and then some…but, I am strong, and I will stay positive, and I will make it…

I have made the resolve of my inner strength being solid, I have an iron will, and it cant be broken. Maybe temporarily damaged, but nothing will ever break me totally again, ever. To tell the truth knowing that is the only thing that keeps me going…is that I wont break, life will have to get rid of me to break me, and even then I hope to leave behind a legacy that outlasts my time here physically.

With that I’m gonna go listen to some rap, and get in the mood to dominate when I wake up tomorrow!! Do what you gotta do…

 

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Feeling better!

So, if you’re following any of my posts you know I had a small breakdown just a day ago…well, like I said in that post they don’t last too long  and I already feel a good bit better.

But, it did a number on me that day, and night…so much so that I had to dip into my reserve of anxiety meds which I don’t like to take a lot for that particular reason, when I need them I NEED them to work…lol. and the less you take them the better they work when you need them.

With something like Cystic Fibrosis this kind of thing is unavoidable, it happens incrementally thought the week, you have ups and downs, but some days are literally just hell on earth type days, that one was falling into that category for sure!

Anyways, I handled it as best I could, and shared it with y’all to show you how easily it is to go from “good” to “bad” with something like CF and not in a physical way (well yes physically) but that time more so mentally…So, I took my meds, meditated, then hooked up to some video games to blow some steam off…it worked, by the time late night/early morning rolled around I was able to sleep a bit, and today am doing much better!

So, with that I am going to go watch some basketball, as Northwestern made history today making it into and then winning their first NCAA tournament, something 78 years in the making. But, that and a couple of other games totally screwed my bracket up…oh well, that’s “March Madness” for you…lol.

Hopefully everyone has a good rest of the week, and if you’re watching these games have as much fun as I do getting into them!

 

 

 

The Plunge…this sucks!

Well, I’ve kind of been waiting for this to happen for a few days since I’ve been naturally feeling not terrible, and have been enjoying watching some really good basketball games…I’ve been elated, enjoying the natural high of life. But…waiting for the other shoe to drop.

It just hit me like a ton of bricks, as I am sitting here watching some game recaps, I feel that nasty pit of the stomach feeling start to churn, it is angst, dread, fear, loneliness, just discomfort on a deep psychological level. The other side of the effect of waiting for the other shoe to drop type feeling, well it has dropped. And it is ripping my stomach apart as I try to control it.

I literally just made a post probably less than an hour ago, and I wasn’t in this mood. I know all people experience this kind of thing, just maybe not in this amplified of an impact. Having Cystic Fibrosis I am used to dealing with discomfort both physically and mentally, and I have a pretty well developed sense of how it is impacting me and how I can keep it in check. Having said that, I also have NO control sometimes, and this is one of those times.

I am sitting here at 12:30 am, I’m alone, and uncomfortable…in a terrible way. These are the times I anticipate with fear, almost more than anything else. The feeling of dread fills my mind, and my stomach in trying to rip its way out of my body to find an escape.

I usually wouldn’t share this type of stuff, I wasn’t raised to complain, but I’m trying to be as real as possible and make this site/blog raw, real, and not sugar coated…I was raised well, and raised with the idea that you don’t complain unless you need to, “don’t cry wolf” I guess would be the best way to describe my discipline in this area. There are times I need help, physically, and even mentally…but, if I always say how crappy I feel I would be complaining almost constantly and more so when it gets bad, but this is one of those times. So,where I usually just suffer in silence as to not create stress and tension among the ones I love, I am using this as my outlet. Trying to share my pain in an attempt to understand it better myself, but also to show how much of an impact something like CF has one people aside from the physical affects.

Obviously, this will subside at some point…but I don’t know when. So, until then I will try to distract myself with meditation, video games, TV, anything to take my mind off of this for just enough time for it to fall to the back burner in my already scrambled brain. As I said I don’t usually share this stuff because it Is my shit to deal with, I am trying to be more open, and hopefully shed some light on what impact an invisible illness has on the person, like I said, aside from the physical impact.

So, with that I am off to distract myself, I apologize if this post seems to just be a long winded complaint. That wasn’t really my intention, but I think it was the outcome.

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…

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.

70° in the middle of January…

So, it’s 70° in the middle of January…this is absolutely nuts, a week ago it was snowing and getting down to single digits, and now its 70°+. This is extremely aggravating when you leave the house prepared with for your day with jeans and a Patagonia on, and then halfway through the day you are stripping down to your undershirt and rolling your pant legs up as you drive so you don’t sweat you a$$ off all day!

However, on that note it is beautiful golf weather, my favorite hobby or outdoor activity, but I’m usually used to waiting until March to play. So, maybe i’ll throw the golf bag in my car and head up and play 9-18 in a bit, as I finished working very early this morning…didn’t sleep much last night. Anyways, I hope everyone is enjoying this weird weather, the end.

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!

New Year 2017

Well, it’s been a while since a posted anything on here. I tried my best to enjoy what parts of the Christmas – New Year’s holidays I could. I actually had a pretty good couple of days in a row, which is very unusual for me. So, on Christmas Eve we went to the Melting Pot, and it was delicious. On Christmas day we slept in a bit, then we woke up and had our morning coffee/tea as we each opened our “Santa Present” which was a stocking. As we sifted through the candy and little knickknack’s we enjoyed the view out over the cul-de-sac we live on. Then we dove into our presents and me, my mom, and my stepdad went in turn opening, we usually go smallest to largest, or go in the order of which presents we get handed…I don’t know why we do it like that, other than some gifts are prerequisites to other ones. It was very nice, relaxed, and enjoyable. As my “natural Christmas energy” flowed I soaked it up, and enjoyed every second of it. I’ve mentioned in the past (I think) that I get a pretty noticeable boost of naturally great energy that flows through me during certain holidays, and a couple other very specific times of the year. So we went through the day and the next enjoying great food, and yummy drinks. We had a good spread of Xmas morning food: orange juice, coffee, tea, Champagne for Mimosa’s, fruit, cheeses, eggs, smoked salmon, and a few other miscellaneous finger foods. That went into lunch, and for dinner we had a really good beef roast with potatoes, green beans, gravy, a really good bread with herb butter, and some sparkling grape juice (family tradition). The day of and the next couple were extremely enjoyable, we had a really nice couple of days, and I kind of forgot about how I felt with all the good vibes surging through me.

As the New Year rolled around the spirit of Christmas had kind of faded, and I was starting to feel crappy (my normal) again…but, I decided to kind of amp up a couple of my meds, and keep the spirit alive as long as I could. So for New Year’s eve we had a bunch of people surrounding our neighborhood doing fireworks, so after dinner we grabbed a couple of drink and went outside and set up on the porch to watch the show! It was awesome, we had a 360 degree fireworks show, when one direction died down we just rotated our chairs and kept on enjoying the show. After a couple of hours of hanging out watching fireworks, munching on leftovers, and sharing some drink and some laughs we went to bed. New Year’s day was nice also, we all slept in until like 10:30-11:00 then we woke up and my mom put out the breakfast snack’s, as well as getting everything else we had enjoyed the past couple of days out of the fridge, freezer, etc…warmed it all up and set it out. We went throughout the rest of the day grazing over the table of leftover delectable, finishing up the holiday drinks: eggnog, a bit of bourbon, champagne, juices, and sparkling grape. As we stuffed ourselves we also, watched a couple of really good movies, a couple that we watched  we showing on TV and the others were movies that we had received as presents. All in all it was very fun, we enjoyed each other’s company, did the whole visit/call family members, and did a good bit of laughing, which I absolutely love to do. It was an absolutely great several days!

Soaking up the Christmas spirit was something we all needed very much, especially because my family needed it. Having the CF makes all the year pretty rough, and sometimes we forget that our family, especially the ones closest to us, tend to carry a good bit of the burden when one of their own has a disease like CF or another lifelong illness, be it terminal or not. It’s kind of easy  to get caught up in your own “stuff” when you are sick all the time, but remembering that they are also suffering is something that needs to be recognized to allow everyone who needs an outlet for their feelings to let that stuff go for a while. Well, it was a success, we had a great week…and brought in the New Year together with laughs and love. I hope everyone’s holiday was great and that you enjoyed your family and friends. Here’s to a great 2017!!

45 minutes until Christmas Eve!

So it’s December 23 at about 11 o’clock in just a bit it will be Christmas Eve! This time of year I really get a lot of “natural high” from the smells, sights, and sounds…It rocks! I finally figured a good way this year to get some stuff done quicker…look online first and then go shop if you need to, lol. I know obvious, right? Nope, not for me, I usually just suck it up take some Advil or Ibuprofen, and hit the stores for hours on end. I’m also super weird about what I get people, and it takes me TIME. Triumph, I finally got it done, I’m ready for Christmas…time to relax. Warming seasonal beverages, egg nog, good food, and family are just my favorites and everything else that goes with it is an bonus. I enjoy presents, and I prefer giving more than receiving actually but, its all fun! Well its late, I’m tired, and sore from sitting in the same position for 2 hours wrapping presents…sweet!?…no. Merry Christmas!!

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!