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!

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.

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.

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!!

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!

First blog post

I decided to start this blog for a couple of reasons…First, to shed some light on what some people would refer to a an invisible illness (i.e. an illness or disease people can’t see visibly). Second, to bring as much of the knowledge/experience I have collected over the years through enduring a lot of hard times to anyone dealing with health issues, or having some kind of life-long struggle. Finally, to reach out and share my story, somewhat for personal reasons, but also if I can help/connect with one person who feels like they’re out in the world alone, scared and uninformed then I will have accomplished what I set out to do.