Day 23- whaaaat?

So I forgot to post yesterday that I exercised again. Go me! I walked 3/4 of a mile. It took me 24:52, but I think that's a major improvement to doing nothing since I haven't had the energy or feel-good to!

Today I got up when the alarm went off so I could start a treatment before eating and meds. I went through the whole thing and never coughed. Not even needed to try to cough. Ookay. So I ate and took my morning meds, and about 5 minutes after I ate, I felt like I needed to cough. I was annoyed that it happened right after I ate, and really did not feel like throwing up. So I started coughing, ready to throw up breakfast, but my coughs were so dry that nothing came up. At all. That never happens. NEVER. In all my years, I have NEVER coughed with no sputum. I really don't know what to think! My first thought was "oh no, I'm too clogged up and nothing will come out!" BUT. There is NO feeling of congestion, no wheezing, no tightness, no.... nothing at all!

It took me less than a minute to catch my breath and breathe normally, and all I've done since then is just little clearing-throat coughs. I'm not sure what's going on, but I think I like it! I wonder if this is common or if it's just me??

I had a wonderful dream last night that I went to the doctor's appointment on the 8th, and my PFTs and X-rays were so much improved that the doctor didn't even know what to say!! Oh, how I want that to happen so badly!!!

Day 21- feeling better...

Today started out kind of yucky- I was really sore from work all week and my body and mind were exhausted from stressing out! But despite all of that, I actually got up and exercised today. I was kind of surprised I did it, but I didn't have anything else to do and I didn't feel as bad as I had been so I just decided to do it. I walked on the treadmill for 18 minutes total. This was only a half a mile though because I was going at 1.5 for 15 minutes then 3 for 3 minutes. It may not seem like much to anyone else, but I was sweating, muscles burning, and lungs burning when I stopped.

My sputum was kind of streaked with red, but I wasn't really concerned as it was just barely noticeable. I felt dizzy right after I got through, but after about an hour I felt better than I had before. I've been coughing a lot more since I did it, but I think I am breaking some of that junk up! My body overall is feeling much much better since I started prednisone and asthma meds. I think those coupled with treatments and exercise will put me on the track of feeling good and gaining weight (muscle).

In fact, I weighed today and am at 70.4, so that means I have gained a pound in 3 weeks. Not bad when I don't gain ANYTHING or actually LOSE a pound or more within that time frame. Hopefully I can increase exercise workouts and stick to it so that my doctor's appointment on the 8th is GREAT!!! I'm looking forward to it, but am also anxious to see what the verdict will be on continuing or stopping this way of treatment. We will see.

Also- will you guys send some prayers up, good vibes/energy/juju, or good thoughts my way for this weekend? I am on the verge of not graduating because of a long hospital admission, and am waiting on word to see if I will get to. So... If it all works out the way I am praying it will, I will be a college graduate when I go see the doctor!!
*Fingers and toes crossed*

Day 19

Sorry, I know I haven't updated in a while. Things are so crazy right now between health, school, insurance problems, family things going on... Whew. I'll just summarize if I can and if that's okay.

So I hadn't been feeling good at all, and finally called the doctor on Monday the 23rd. I explained my symptoms and everything, and so I was prescribed Prednisone because it sounded very much like it was all asthma-related. So, I was to start it that day and if I am not feeling better by Thursday night, I have to go see the doctor because there could be an underlying infection somewhere.

I woke up Tuesday morning with really bad stomach pains, and felt dizzy. I overall could already feel a difference though. I wasn't so out of breath, and I actually went more than 3 hours without an inhaler or a treatment. I did feel better than I have breathing-wise.

Today I woke up with a little bit of stomach pain. Also, I'm coughing more than usual. I'm not coughing up more mucus, just coughing more. It almost feels like a dry cough until I make myself cough hard, and I can feel like there is something breaking up in there. I am also having to blow my nose more too. Whether this means that I am on the recovering side of whatever I had and Kalydeco is doing more, or if there is something else going on, it's hard to tell. It's hard to know for sure what the medicine is doing now, because there is so much difference in how I breathe, cough, feel, everything since I started. I know there is a difference, but I don't know how I am supposed to feel. Does that make sense?

So, I will see how today goes. Hopefully this coughing thing I have going on will go away. We'll see.

Day 15- booooo

What the heck. I am still not feeling good. It's so aggravating. I don't know what's going on.

I don't feel congested, although I feel out of breath- still. I'm up to 4 treatments a day, and inhaler sometimes in between. I'm considering calling the doctor. I know a lot of you are probably going (you should have already gone, yadda yadda) but my doctor/hospital is almost 3 hours away, so I can't just take off and go on a moment's notice. Plus- gas prices don't help either. If I do have to have a tune-up, I can't do home IVs because it's so far away, and have to spend the WHOLE time at the hospital. So it's not as "easy" as you think to decide when to see the doctor. If I am not better by Monday, I'm calling to see if I need to make a trip. This would be majorly inconveniencing, as I am still doing homework and interning. But, what good is it to choose anything over my health?

My symptoms are:
Shortness of breath
Hard to catch my breath
Major headaches (almost migraines)
Fatigue
Wheezing
Feeling feverish

I have a scheduled appointment on May 8th...

Treading water...

Ugh! I still haven't finished homework! It's so aggravating! The three week hospital stay put me so stinking far behind. I hate that I feel like I'm not going anywhere. It seems for every assignment that I finally finish, there are 3 more needing to be done. I've NEVER had this much trouble catching up. But this 3-week hospital stay took a lot out of me. It took me almost 3 more weeks to recover. Plus I'm catching colds and whatnots every other day it seems like.

It is really frustrating that one of the things I want most in life is right at my fingertips, but I'm treading water trying to reach it. If I don't get to graduate, I will be absolutely devastated. I have wanted to be done so many times before, but there's always that part that wants to keep going. And now that I've gotten to the end, I may not reach the goal. I may fall short of it. I don't know what I would do if that happens. I can't say that I would finish later, because of so many things that have happened. I want this so badly.

It seems unfair that there are some people who are healthy that go to college and blow off classes, party, or quit then start then quit then start, and still they seem to do fine. And yet here I am- and I can't even finish 2 classes worth of assignments. It is really frustrating to me. Very frustrating.

It really makes me jealous to know that some kids have no troubles at all getting through college. If only it could be that easy for me! But it's not. Just like every other single thing in my life. Always have to be difficult. Sigh. I wouldn't know how to live any other way....

Overwhelmed.

I'm feeling a little better this morning, and can say that I believe I'm on the uphill climb of getting better. I slept pretty good last night, although I do still feel sleepy this morning. As of right now (halfway through a treatment) I don't feel near as tight chested or wheezy as I have the past few days. I'm thinking that maybe I'm still tired because my immune system was fighting whatever was making me feel bad, and now it's recovering? Maybe? I don't know.

I was asked yesterday if I felt any different, and just how different. And I did not hesitate to say that I am breathing better. There is absolutely no doubt that I feel better in my lungs. Even if I go back to the doctor and there's no significant change in X-rays or PFTs, I KNOW that something is different. Period. No one can tell me anymore that Kalydeco won't make me feel better, because it 100% absolutely positively has. I am so thankful that I got to at least try it because I'm sure that it has changed me- even if it's just made me cough less strenuously. That alone was completely exhausting.

I am trying to finish my homework before graduation. If I don't get good grades, I won't get to graduate. And I'm afraid if I don't graduate now.... Well, I'm just afraid. I hate that because of CF, I had to take so much time off from school. I hate that! Now I am more than a month behind on assignments and they are due within the next week. It's so overwhelming. If I hadn't had to go in the hospital, I would be on track right now. It's stupid. I am working as hard right now as I can, going from one subject to the next, doing past lessons while trying to work on current ones, while also trying to finish my internship... It's frustrating and stressful to say the least. My poor little body is so stressed out! I am trying to get everything done, but it makes me so tired! My brain, my body, my everything. My muscles are sore from sitting at the computer and writing in notebooks. I'm just frustrated that this seems to happen right when I don't need it to. It really stinks that no matter how hard I seem to get to catch up, I'm still so far behind. It really does a number on my confidence.

Well since I can't actually write while doing my treatment, this post took up treatment time. Now that treatment time is done, I am going to back to work. Sigh. I so wished that I never would have had to go in the hospital again. I don't know hospital stays can't wait until nothing important is happening. But CF won't wait, and neither will graduation, so I'm off to get as much done today as I can. Sigh.

Just saying...

Everything's still about the same- nothing has really changed. Woke up today with a bad headache, almost the kind of headache I had when I found out that I could need oxygen at night. But, I am not a professional and can't be sure. I just know that it's on the verge of a migraine.

I'm still waiting on the feeling good part. Maybe not as patiently as before, but I am waiting. I know I'm not the only one ready for it to be here, and if I could make my body feel the good already, I would. Some people say "you have to make yourself feel good", but that doesn't work for me. If I don't feel good, I don't feel good. I may pretend to feel okay, but I know that I really don't feel that way. I just wished that I could take sick days from being sick. A lot of people don't get that no matter how much they hear me saying I don't feel good -they are only hearing it. Or seeing it. But they aren't feeling it. If I could forcefully make my body feel right or make it work right, I would. I don't like feeling bad almost as much as you don't like me saying it. I know that many people could relate to this- not just CFers. There's so many other factors that what I just said could go for. Invisible illnesses. Things that happen on the inside, but no one can see. So, what happens is that people are less likely to believe you or they get tired of complaints. Surely there are invisible illness sufferers out there. Am I right?

So, I'm sorry to everyone that right now I'm not feeling well still. I won't say "maybe tomorrow" or "hopefully soon" because I just don't know how things are going to be.

So until the next post- no news is the same news....

Feeling down today...

Still not feeling very good.. But, I have heard that this is to be expected within this period of the medicine schedule. Feeling worse for a while is worth feeling better for a longer time, I guess. Hopefully anywhere between a 3-10 day span, I will get as much nasty, bad, yucky CF junk out so that I can feel better than I have been in a long time. I just want to get back and do what I was enjoying doing within the first week (like getting out of the house, and going to work, and shopping, and crafting). But- I just have to feel worse before I can feel better right now. Although it's hard not to get discouraged, I still have faith that I can feel better, and that it will happen. Hopefully sometime soon.

Most of the things I have been feeling (sick-wise) are being short of breath, lack of energy, sleepy, and just all around tired. I will say that am not back to breathing and coughing like I was before starting. I can absolutely tell a change in how I am breathing, how deep I am breathing, and how I don't have my breath catch because of a cough or crackle. And while all of this is how I am now, I shake my head at how different things could have been.

I can feel how bad my lungs are now, though. Like when I try to take a deep breath, yes it is deeper than it used to be, but- I still feel like I could breathe in more. Deeper. Kind of like I used to could be able to breathe years ago. It seems like so long ago, but then again it doesn't. I get really sad when I think about it. And mad. And frustrated with myself. And life. And CF. Then I think of how unfair CF really is, and that makes me even more sad, and mad, and frustrated. I think of how just 5 short/long years ago, I could run and have no problems at all. I could play a full basketball game and not even feel short of breath. I could keep up with everyone else and I could breathe, and I had muscle, and I could do difficult things with no problems!

And then within the span of a month, I am where I am now. I can't even think about running because I get tired. I can barely SIT and WATCH a basketball game without feeling like I can't breathe well. I am back down to the lowest weight I have been since before high school. I can't do simple things like doing laundry without being so short of breath and having to sit down. It's stupid and it's unfair and it's frustrating and it's aggravating and it's.... just not fair. Yeah, I know "life isn't fair"... yeah I kind of got that. But until something like this happens to you, you just can't tell me that. Because obviously I know.

CF is stupid and I hate it. Not because of how it effects me now, but how it completely just.... broke me. I'm broken. I don't know if I can ever be fixed like I was, either.


And it's not fair.

I just want to feel better. Like I was. I am praying for that. I am so ready to say I feel good again. Not "okay" or "fine" or "eh" or "hanging in there". I want to be able to say "good" for once.

One week down, three to go.

It's been a week tonight since I started Kalydeco, and although I have felt better than I "normally" would, today wasn't such a nice day. It's actually the first time in the week that I haven't felt better than the day before. In fact, I feel worse- but I'm not back to feeling "normal" bad.

This morning at 7, I did a treatment and then ate breakfast, and just doing that I was tired. Not sleepy but not exhausted either. It's tough to really explain. I wasn't feeling good, but I wasn't feeling bad either. I just wasn't feeling like I had been, like maybe a few steps under. So after I did all the morning stuff, I decided to go lay back in bed for an hour or so. I got up close to noon because I was so tight chested and was wheezing so loudly! I did an albuterol breathing treatment, hoping that would help. It didn't really, and by 1 I was laying back down and resting. I wasn't really hungry when we sat down to eat because my stomach was hurting a little bit too. I still felt short of breath and almost felt like I could puke if I wanted to. By 5, I went to do another albuterol treatment/Vest and fell asleep after that until 7 something. I didn't feel like eating much with the 2nd dose of Kalydeco, but I ate a peanut butter sandwich and drank some juice.

It's 9:30pm, and I am doing another treatment right now, and if I still feel tight, I guess I will do more throughout the night. I will say that I feel like it is my asthma- not any kind of congestion or anything. I knew I had asthma, but it was hard to distinguish between what was an asthma wheeze and what is a CF wheeze. Especially when all I focused on was CF symptoms. I can tell that I don't feel as congested or crackly as I did a week ago, but I am feeling the symptoms of asthma.

One good thing is- I started allergy medicine today, so maybe that will give me some kind of relief. I may also start on an antibiotic, because I have been running a fever and my nasal discharge is a yucky color. That's about the only update I have today... Maybe this feeling will go away soon, and I will start feeling good again ASAP.

Day 5- Port flush & "get out of the house" day!

First of all, I would like to apologize in advance for any spelling, grammar, or punctuation mistakes. I am doing this from my iPod, and not my computer.

Today I took off work to go to Ft. Smith to flush my medi-port. I'm sure that the people who are associated with CF know what this is. For those that aren't, it's a device under the skin that is attached to a line (like a catheter) and is run through one of the major veins in the neck/chest. It's almost like a permanent IV, but there doesn't have to be a needle in there all the time. Anyway, I had to have it flushed with saline and heparin so it wouldn't clot and be clogged. It has been a month today since I got out of the hospital and last had it done. I do it every month to keep it in tip-top shape! I am a stickler for routine port flushes. There is NO WAY that I will let it "go bad" because of something that I am responsible for. I didn't want this one, and I sure as heck don't want another one- and that is why port flushes are so important to me. I LOVE my port now, and probably think it was one of the best decisions that was made!!

Whew, sorry getting off track. Anyhow, I went to bed at around 10ish or so last night (after sleeping almost all day yesterday) and slept all night until 6:30 this morning. I started a treatment, and got almost halfway through before I started coughing. And I almost had to make myself cough. That's not "normal" for me because I usually wake up, sit up, and before I get my meds out of the fridge, I'm already coughing my head off. Today, I (big cough) (big cough) (big cough) (smaller cough) (smaller cough) spit. Done. It was easier to get out coughing wise, it was easier to spit out thickness wise. Well, it was just easier. I wasn't out of breath afterwards, either. After I finished, I ate and got dressed to leave. Then, I realized- "I actually feel like fixing and straightening my hair". So I did. Then, I realized- "I actually feel like putting on make-up". So I did that too. Do you know how long it's been since I felt like fixing my hair and putting on make-up?? Especially at the same time?? Since FOREVER ago. If I feel like fixing my hair, I don't want to do make-up because "I'm already too tired". Or I just pull my hair up in a ponytail, because it's fast and easy and I don't get out of breath because my hands are above my head for more than 30 seconds like they are when straightening it. So... That kind of encouraged me!

We get to Ft. Smith and I start coughing in the lobby at the hospital. I was kind of out of breath. The reason I was out of breath is because it was almost 2 now, and I hadn't done another treatment yet (long story- but I was unable to do one, I didn't just NOT choose to do one). Plus, it was the first time I had coughed since this morning! So, I coughed and brought some sputum up. There was no bathroom close and I didn't have a cup or anything, so (I know this is gross, but most of us have been there) I had to swallow what I brought up. Here's the thing though. There wasn't too much there! And I could definitely tell how thin it was. Normally when I had to swallow the mucus if there was absolutely no where to spit it- it would be so so disgustingly thick that I would want to vomit after doing it. It would literally gag me and I would start coughing all over again. I would get hot, and start to sweat, and have to bring my arms over my head to get my lungs as open as I could so I could catch my breath. Today, I swallowed it, blew my nose in my very last Kleenex, got a drink, and was done. Within about 20 or less seconds, I was breathing like I was before coughing. That's one of the biggest differences that I've noticed just since Friday night!

So after we left the hospital, and on the way to eat, I finally did a treatment (albuterol) and this was about 3 or so. I didn't cough doing it at all or anything. I felt short of breath walking around shopping and had to get in the buggy one time, but I am not used to getting out and walking as much I did today. It was pretty tiring (physically not mentally)! But I had fun because I felt like I could enjoy the day and not worry about "I can't breathe because I need to cough. I need to cough. (hard hard long cough that lasts about 5 minutes straight) Catch my breath, catch my breath, catch my breath, catch my breath. Take a break. Can't go anywhere else- too tired. Wanna go home. Out of breath. Gotta cough. Don't wanna cough. Hold in cough. Out of breath. Take a break. I'm tired." I actually only coughed one- yes ONE- time today. And that was when I just mentioned above.

It is now 9:38pm, I just finished doing a treatment. I coughed big at the first because of hypertonic saline, and got a reasonable amount of junk up. I haven't had to cough big since. I have just been doing small coughs and even that is getting sputum up. Not a whole lot, but I mean- every little bit helps. And I think I would rather small cough and get a little out than cough long and hard and only get little out- plus be completely and utterly exhausted from doing it.

So overall, today has been a very improved-and-I-can-tell-it day! I'm not sure if my lung function or anything has changed, but I can absolutely feel a difference in how I feel overall. I felt like I had more energy today than I had in the past two weeks combined. I also weighed today, and it showed I only gained 4 oz since Saturday morning. But, I still am hopeful that after a few more days feeling this good that I will see an increase in appetite or weight coming on. Fingers crossed that will happen!

Okay, it's about bedtime for me because even though I spent almost 12 hours away from home, and I've been up since 6:30 this morning, I feel like going to work tomorrow!!! Goodnight!
:)

Day 4

I know... it's been a long time since I have posted... I'm sorry. I have been feeling like getting back to work, so that's where I am for most of the day!

I have been sleeping through the night- which was something that I did NOT do. I can go through the whole night now without waking up short of breath or coughing my head off! Yay! I did notice that I coughed more yesterday than I have since starting Kalydeco, and I coughed up a HUGE yucky amount of junk during an afternoon treatment. Like- dark brown yucky. Right after coughing up all of that, I was coughing up more red tinted mucus, but it never got to full blood, and I wasn't too concerned with it. After a bit, it quit and went back to a "normal" color when I felt like I needed to cough stuff up.

Today I was so so sleepy! I think it is because my body is now craving the sleep I have been getting since Saturday night. I am not physically exhausted like normal (or like I used to be) but I feel like I need to sleep more. I feel more rested at night, and I am not tired when I wake up anymore. I may be sleepy, but I'm not tired. It's hard to explain, but I know what I mean, and I know how much of a difference it makes to sleep and rest and to just go to bed. I had a headache today and felt kind of feverish, but it went away after taking some ibuprofen. Not sure if that is part of the side effects or something like my allergies.

I may find myself short of breath or wheezing sometimes, but I feel like it is more concentrated on asthma, and not CF. I may feel tight, but not congested. Coughs are dry (for the most part) and I can catch my breath quicker after I cough than I could before starting Kalydeco. I will be weighing tomorrow to see how that is working out. I haven't really noticed a change in my appetite yet, but I still have faith that it will happen. Hopefully after a full week or even two I will start to see more of the changes I have been looking forward to. 

I have been having allergy problems, so I think I need to start taking some allergy medicine. Plans are to talk to the doctor tomorrow morning about that! Maybe once I get allergies under control, I will start to feel even more better as the days pass by!

Day 2

Today is the 2nd day, and I don't really feel any different. I will say that after last night's dose, I felt a little dizzy about an hour after I took it. It wasn't unbearable though. It's like the dizziness that Diflucan (fluconazole) gives me when I am on it. So- not a big deal to me. When I woke up this morning, I had a bit of a sore throat. Again, it wasn't terrible or unbearable. I can't be 100% sure that it was from the Kalydeco though. Like I said in one of the previous posts- I have been battling a cold or something and it could have been from "mouth-breathing" (I am a nose breather when I'm not stuffy) through out the night, or even some post nasal drip. After getting something cool to drink and blowing my nose, it went away. When I went to do my morning treatment, I didn't cough more or less than usual. It was all the same. I have noticed that I have to blow my nose quite a bit more though. I got a LOT of junk out from the time I woke up to the time I finished the treatment. Don't know if that was the medicine or not, either, so please don't think I am trying to say it is or it isn't. It's just what happened.

I took my 2nd dose around 8:30am, and think that I will stick to an 8:30am/pm schedule. That way I can take it before I leave for work, and then at night before a night treatment.

I haven't had any headaches, fever, or pain (yet) so as of right now, I don't even feel like I have taken anything. From some of my other Cysters' experience with it, they said that they didn't feel a full effect from the medicine until the 3 or so dose. So..... I guess we will see how I feel tomorrow after tonight's dose! I am feeling a little tired, but that really is nothing new. I am always, always, always tired. I am hopeful that Kalydeco will give me just a teensy bit of energy to do things I need to, and so I won't get tired so quickly doing small things.

I have to catch up on all my school homework, so I am going to do that. I will try not to forget to take notice and post if there are any kind of changes at all. Okay, as I finished that last sentence-

I just started coughing, very productive and wet. I coughed up approximately 1/4 c of mucus at one time. Whoa. I also just blew my nose and got out a bunch of snot/mucus too. It wasn't too yucky looking, about the same as when I just regularly cough, so I'm thinking that is just the top of the pile down there. I want to start exercising more- like running or something fairly... I can't think of the word... just more. But I don't have the energy yet, or the breath yet. Maybe by Monday I can start doing that!

I also want to keep track to see if my weight has gone up, so I weighed this morning. If I tell you, don't judge, remember?! It was 69.4. Okay, okay, pick your jaw up and stop shaking your head. I can't help it. Remember this is my page, and if you want to judge or criticize, then get off. I am posting this as a way to help me know where I started and where I end up. I will try to weigh every 3 days or so, and see if there will be any noticeable changes. I guess that is all the updates I have for now, and maybe I will have something good to post about next time!

Here we go!

Kalydeco got to me approximately at 6:50 this evening! I have already taken one dose with a spoonful of peanut butter (since you have to take it with fat containing foods).

We shall see how soon I feel any different- good or bad. I am nervous about all the coughing I have heard that it makes you do. I am looking forward to getting some of that old junk out, though!!

The waiting game begins!

So today is the day that my medicine should be delivered! For those that aren't sure what I'm talking about, I'll give you a shortened version (if that's possible) of what is going on right now...

First off, Cystic Fibrosis is a genetic disease in which the lungs, pancreas, digestive system, heart, and sinuses are affected. You get one mutation from mom, one from dad. The two mutations "make" CF. My mutations are DF508 and 1717-1G>A. Mutation talk is for another time though.

Here is the cff.org's answer for "What is Cystic Fibrosis":

Cystic fibrosis is a life-threatening genetic disease that causes mucus to build up and clog some of the organs in the body, particularly the lungs and pancreas. When mucus clogs the lungs, it can make breathing very difficult. The thick mucus also causes bacteria (or germs) to get stuck in the airways, which causes inflammation (or swelling) and infections that lead to lung damage. Mucus also can block the digestive tract and pancreas. The mucus stops digestive enzymes from getting to the intestines. The body needs these enzymes to break down food, which provides important nutrients to help people grow and stay healthy. People with cystic fibrosis often need to replace these enzymes with medicine they take with their meals and snacks, which helps them digest food and get proper nutrition.

 Just how exactly does CF affect the lungs and make all that nasty sticky mucus, you may ask. Well,
Normally, the healthy CF gene makes a protein—known as CFTR (Cystic Fibrosis conductance Transmembrane Regulator)—that is found in the cells that line various organs, like the lungs and the pancreas. This protein controls the movement of electrically charged particles, like chloride and sodium (components of salt) in and out of these cells.
When the protein is defective, as in cystic fibrosis, the salt balance in the body is disturbed. Because there is too little salt and water on the outside of the cells, the thin layer of mucus that helps keep the lungs free of germs becomes very thick and difficult to move. And because it is so hard to cough out, this mucus clogs the airways and leads to infections that damage the lungs.

This is how the lungs get full of that yucky stuff. Germs like, no, LOVE to settle in the mucus that will not come out. Treatments consisting of inhaled medicines (bronchodilators, antibiotics, and mucus thinners) and airway clearance techniques (the Vest, CPT) helps control the amount of mucus that stays in the lungs. Coughing and spitting out this mucus is the only way to get it out of the lungs. I know it sounds nasty and crude, but you know what? I really don't care. If it's going to help keep me alive and not sick, you better believe I'm a walking, talking, coughing, snotty, spitting fool! There are other medicines that I have to take to stay healthy, and they have nothing to do with breathing. I have to take enzymes (like the ones mentioned above) every single time I eat, I have to take special vitamins because my pancreas won't allow me to absorb any other kind, I have to take extra vitamin C to keep my immune system in tip top shape because it's so easy to catch ANYTHING. I have to take minerals like selenium. Iron (I'm anemic), fish oil, calcium, ibuprofen (for inflammation and also arthritis), omeprazole, just to name a few more and I'm sure I have missed a couple somewhere. All in all, I have to take approximately 50 pills a day and I spend approximately 6 hours doing treatments a day (8 if I don't feel well). Let's do the math here for a second. I have to sleep at least 10 hours or I don't feel good the next day. So- 24 hours in a day- 10 hours of sleep- 6 to 8 hours of treatments- And that leaves me only 6 to 8 hours for just me and what I WANT to do. This doesn't include the eating, coughing, or resting that I have to do everyday as well.


Got off track there for a minute. Back to the medicine. I was approved by the doctor and by my insurance to try Kalydeco (a new CF medicine) for a month to see if there will be any benefits. Kalydeco works by targeting the problem in the cell- the CFTR. I am not sure of how things will go, but I am hoping that they will help me feel even a teeny bit better. For a week I have been fighting a cold/allergies/sinus issues, and I am hoping that it will alleviate some of the pain I have there as well as in my lungs. Unfortunately, I don't have a home spirometer, so I will have to go by how I feel. I go back to the doctor on May the 8th to see how much of an actual change there will be.


As of my last pulmonary function test, my numbers are:

FVC- 39%

FEV1- 28%

FEV1/FVC- 75%

PEF- 53%

FEF2575- 13%

These aren't the best numbers at all. I am hope hope hoping with all my might that I can get them up at LEAST a couple of numbers. That would be such a blessing!

Well.... I am waiting on the couch, right beside the window for the delivery truck to get here!!

To blog or not to blog...

So... this is my first blog post.

I'm not too sure on how all this works, so bear with me. I'm also not too big on expressing my feelings, so be prepared to read some random, off-the-wall, "why is she talking about this" kind of things. First of all, I feel like I need to explain the name of my blog. Bees, Chis, Life, and Lungs, and why I chose that name. I know the last two are pretty self explanatory, but what the hey. I'll go ahead and tell you about those too.

The Bees- My sister's kids' are practically my life. They always have been, and they always will be. I have 2 (soon to be 3) nephews and 1 niece. Their names all start with the letter B. So- I call them "Sissy's Bees". This makes it easier to round them all up!

The Chis- I have two Chihuahuas who like to rule my life. The oldest- Pransi- is 9 years old, and is a laid back, mellow, lazy dog. She is such a good dog. She minds very well, is loveable to an extent, and is pretty protective of the family. The youngest- Polli- just turned 2 and is like a child needing constant attention. She minds about as well as a stick, loves everybody (and by everybody I mean- if you robbed our house, she would be wagging her tail and wanting you to pet her the whole time you were there), and she does not care who comes into the house as long as she gets a pet. She also has this thing where she gets so hyped up by anyone who is gone for longer than a duration of 20 seconds that she pees everywhere when they even look at her when they return. Sigh. I still love them both, although sometimes I wished I could just lock myself in a room by myself for 5 minutes. I don't know what I would do without them, though, because they are always making me laugh by doing some silly thing!

Life- This could be anything. No, seriously. Anything. If it doesn't fit into the other three categories, it automatically falls under this one. No questions asked.

Lungs- This would be where all the CF posts would fall under. Since CF affects my lungs more than anything else, I chose this to be in the title. Some things may be good, most things will be bad. That is just how it is with CF. Hopefully, though I will be posting more and more under the first three categories than I will in this one!

I made this blog in hopes of achieving a couple of things:

• Show that my life isn't always about the bad things. To help me to remember that I have three (almost four) babies that look up to me and that care about me and not my disease. Realizing that no matter how hard of a day or week or month or year I have had, all I have to do is think about those kids and my heart fills with love and joy! I can forget even for a second the problems I have and focus on just how much love and wonderful blessings I have instead. Posting the things they say or do can also help me remember just how precious and innocent little ones can be, and bring a smile to my face when I don't feel like smiling.
• When my life is surrounded by bad things, it should be okay to post about it. I don't want judgement passed. I don't want to be ridiculed or criticized. I just want to get it out and leave it be. We all have things we want to vent, gripe, cry, or be frustrated about. When this happens, I just want to be left alone. If you want to make me feel better, maybe an "I'm sorry" or "Hugs" or something like that will help. I don't want to hear that I need to stay positive. I don't want to hear that it will get better. I don't want to hear how much worse someone else has it, because I already know there are worse than me out there. And I especially don't want to hear how big of a baby I am. I believe that it is okay to be down and sad for a bit.
• Just because I may post a lot about my Cystic Fibrosis doesn't mean it rules my life. Yes, it is a big part in how I live. Yes, it does affect a LOT of my decisions. Yes, there are days that are worse than others. BUT- None of this means that I am giving up, or backing down, or letting myself go. It just means that this is how it is. Life is tough. Life with CF is tough. Living with it for 21 years has made me tougher. Being tough doesn't mean that you can't show weakness or fear. It means turning the weakness into a strength, overcoming that fear, and pushing on.
• Not all things will be about CF. Not all things will be about the kids. Some things may just be what's on my mind. Sometimes I need somewhere to just write things that go on in my head. I need to get it all out. Good or bad. It may be what I had for breakfast, or a new joke I heard, or what I think about someone. It's my blog, so I think I should be allowed to say whatever I feel like saying or want to say!

Well, that's all for my very first blog post. Maybe I snagged a few readers. Maybe not. I do feel better already though, getting all of that out, so I would say that I did something good. Hopefully soon I will have a better, more exciting post!