Damn!

Well, its been a while since I’ve made a post, been having a pretty hard time recently.

We had to take my dog to the vet the other day, she’s had cancer and had a tumor…we were given a diagnosis a year ago that she’d only be able to go for 2 months, we had her for an additional 14, and without any pain we were comfortable having her stay with us…as the vet put it “she doesn’t know she’s sick, so as long as she isn’t in pain, she’ll be fine.”

So, we brought her home started feeding her only home cooked food, and making sure she got lots of extra outside time and loving, well it paid off and I got to have my sweet girl around for a while longer…but, as I didn’t want to have her be in any pain at all, the second I realized she was having pain we took her into the vet, and they confirmed the suspicion, so we did the humane thing, and didn’t keep her around being in pain.

As I was saying goodbye and tears were streaming down my face and onto her greying hair, I thought about all the times I had cried into her fur and she always laid right there and allowed me to release my pain with no judgement, especially when I had no one else around. She was an angel…that’s for sure.

Saying goodbye was one of the hardest things ive ever done, but it was her time, I do miss her every second of everyday though, especially when she would be on my heels, and now she isn’t…im still having bouts of crying and missing her next to me.

In time I may get another dog, but not right now. Being a CF patient brings with it a lot of weird things regular people just won’t ever have to think about…I honestly thought I wouldn’t be here without her. Going through the shit I go through without her is miserable, and I have to remember to keep my head up where before she would bring a smile to my face.

I miss her…

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.

Good Morning…kind of.

So, it’s only 10:30 and I’ve been up for about an hour. This sucks, lol, and after last night’s attack I kind of wanted to get more than 3-4 hours of sleep, but obviously that’s not happening. Well, this is pretty routine like I said in my last post…so, I’m sitting here enjoying a STRONG cup of coffee, and listening to some Dave. The fact that I’m used to this is telling especially since I just deal with it like any other day, while trying not to allow previous stress to creep into me after I’ve bypassed whatever is stressing me out…like an attack in the middle of the night.

Well, it is early and I’m still kind of trying to get my bearings, and shake off being pretty exhausted. On a positive note it feels like a did 1,000 crunches last night, and that’s cool…I guess…haha, ahhh! So, I’ll probably mess around until I’m awake enough to get some food in me, and rinse off the soreness in a scalding hot shower. Funny what the human body can become accustom to after it happens enough.

I’ll probably do another post this afternoon/evening sometime. So, I hope everyone has a great day. Again, if you’re following these blog posts I very much appreciate it. Spreading some knowledge about the unseen aspects of this invisible illness called Cystic Fibrosis is very important to me, and your help means a lot.

Cystic Fibrosis Late Night

Damn, I just had a late night “CF Attack,” these things suck! So, it’s 1:30 A.M., I haven’t been asleep but maybe 30-45 minutes, and boom I wake up coughing really hardcore…so much I ended up in the bathroom throwing up. Well, after I finish throwing up my stomach is in knots, I wait in the bathroom for a bit just in case, and then take a quick shower so I go back to bed. Well, now I’m laying in bed wrapped up in a bathrobe, and towel…but, I’m freezing my ass off because it dropped down so cold tonight, especially being that this afternoon was like 70º, this sucks badly. Also, I’m still coughing, and since I can’t go back to sleep like this I’ll probably be up for the next few hours being nauseous, cold, sore, with tense abdominals, and a horribly tight chest …oh yeah, don’t forget the heaving headache.

Lol, I know, as ridiculous as it sounds to deal with this is pretty commonplace. I’d say this happens at least once a day, sometimes I can go a few days without one, but then some days it happens all day long. Those are my hellish CF day’s…spent in the bedroom, or bathroom. Moreover, I usually can only consume Chocolate Boost’s, and yogurt on those days, as that is all my stomach will allow. But, now I’ve got to get my appetite up enough to eat something before I try to go back to sleep…yay…the fun of CF (sarcasm), lol. Sorry, if I don’t laugh at my problems I’d be a basket case!

I wanted to share this with y’all in real time, just to give you a better glimpse into the daily CF symptom’s forced upon us, and the toll it takes on our body. Everyone who has CF knows exactly what I am feeling like right now, and I hate that. Anyway, I am gonna try to  eat a yogurt, or something, and watch some on demand shows…maybe a movie. So, I say Goodnight to y’all, and if you’re reading this I appreciate it. If you know someone with Cystic Fibrosis reach out to them, if you’re dealing with CF it’s comforting sometimes just having that friend you can call to shoot the breeze with, someone to pull you out of the messed up head state instances like tonight throw you into so violently.

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.

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!!