Clinic Update 4/29

There is just something about the word clinic that makes me shudder.Maybe that you never know if you'll hear good news or bad news. Maybe it's the fact that you never know if you'll have to stay. But there is just something about that day, even if it's just an hour appointment, that makes an hour appointment a whole day affair.

Last week I had PFTS done(for some reason, I don't do them the same day like everyone else). They came out to be about 29%. Not shocking, but not exactly something that I'm jumping for joy about. I really was hoping for a better number, especially since I really have been doing my best to try and increase my lung function.


The doctor didn't have too much to say this visit-which is honestly,releiving considering I have had bad news everytime I go to the doctor's lately.So I'll be able to sum it up into a few bullet points.

• I'll be going to an ENT for a full evaluation. She believes that a lot of my cough is coming from sinus',hence why there's blood.
• We're running a full lab workup to find this auto-immune disorder that for some reason, she believes that I have. Endo-something.
• We'll be adding a CPAP machine into my daily life-really, anytime that I can.Crazy part-my insurance wanted $633 dollars for one!!!!!!!!!!!! Crazy.
• She was able to tell me that I have "severely thickened airways" but didn't tell me much on what to do about it-thanks doc.
• Still not cleared to exercise-I can walk and bike but that's about it.

So, at this point I feel stuck. We haven't really made any changes to make me feel better, so I guess I'll just keep declining. It's a little frustrating but that's all I can do I guess.

Finding time in the day...

When did life become so hectic? Is it when we added on television and social media that takes up hours of our valuable time? Is it when shopping became a hobby instead of a necessity? I am not sure. I find myself always wondering, "where has the time gone?". With CF, I find time is an essence. Not only in a long-term sense,but a short term sense as well.

Now that I'll officially be done school, it's time to focus on my time and time management. All I will have is work and doctor's appointments. I can finally develop a schedule to do my treatments daily, and to get everything else done as well. I am beyond excited to be able to schedule my life and know I don't have to throw in time for class and schoolwork in there as well.

How do you all manage time?

The passing days...

What is new to share? Nothing much at this time...It has come to the end of my 3 month appointment wait...with my appointment being on April 29. This is the month that I spend preparing, hoping, praying for some sort of good news. A miraculous pft or somehow a fairly decent xray. An appointment where my doctor says "great progress" and pushes me out the door. But in reality, I know these things are far from happening.I know that we are so close to transplant and that I will now start the pre-screening process. I know that I will leave that office with tears, knowing that the battle isn't over. If anything, this is what CF is. CF is the uncertainty of not knowing. That any moment you're life can change forever. You can develop a deadly infection and be done within a week. The uncertainties of not knowing what you're walking into when you enter that appointment-hell,normally you don't even know if you'll be walking out. I suppose there is never a dual moment in this life. That's all for now<3

SIBO,anyone?

Today I'm blogging for help! On Tuesday,I had the hydrogen breath test. The 4 hour test that was the last in this GI workup series. For anyone who doesn't know-you go into the office, and drink this solution and about every 20 minutes you blow into this bag while a nurse collects the air that you're blowing. I didn't really do too much research on the test-but now I'm wishing that I had.

Anyways,I got the call from my doctor today saying I have SIBO-Small Intestinal Bacteria Overgrowth. For once, the doctor has stumped me! I have no idea what to expect, what to do, or anything really. The doctor put me on rifamixin 500 mg three times daily and said we will "monitor our progress".

So,anyone else with this SIBO? I would love to hear inputs from any bloggers out there, with CF or not!

Payday Fun Day

I don't have much to say today. But I wanted to post at least a little something so that my followers didn't think that I've fallen off the face of the earth. Lately, life has been one hectic mess. I've been working 60+ hours a week, going to school, and still doing my infusions. The infusions are getting tougher and tougher as time goes on. Last week, I felt absolutely terrible until about friday-only to have to go back for another one on Monday. This week, I hadn't even eaten. I didn't even think about food. I know it'll get better eventually, but I also know that things typically have to get harder before it gets better. The highlight of this week would certainly be the fact that I got paid on Friday, which means I finally get to restock all the things I need! So I figured I would share to my viewers some of my purchases and expenses.


Firstly, I get all of my prescriptions filled at Rite-Aid. I have a flex-choice plan through my insurance which means I can ultimately get them filled anywhere I want, but depending on where I get them filled, it will cost more. I started getting them filled there about a year ago when I got into couponing. Rite-Aid has a wellness program where you earn points on prescriptions and purchases. After 1,000 points you receive 20% off all regular priced items in the store(excluding prescriptions). Oh,and did I mention that each prescription banks you 25 points? Yeah,that's why I go there. It's already March and I have over 500 points which means I'm halfway to earning 20% off for the year of 2014-I already earned 2013's 20% last year.

Yay for packages! Ok, so this isn't all of it-but just some of the things that I've been slacking. I order my things from an assortment of places-depending on where's cheapest. I can't afford to lose money on silly things on a starbucks pay budget.

1-I have been using Pari Plus LC nebulizer cups for the past year for my inhaled albuterol and hypertonic saline. I also have a nebulizer at both my house and my boyfriend's-it keeps me from having to carry it around with me. So with that being said, Vitality Medical was having a great sale on these cups this week! I normally on buy a set of 2 at a time at about $14.95 each, but Vitality had them on sale for 10.85. So I snatched up four and now I have a few extra.

2- It has finally become time to get a new glucose meter. My doctor recommended the Bayer Breeze 2(picture below). It has this nifty little disk that holds 10 strips at a time, so I only have to worry about changing a disk every 5 days. This is nice since I'm always on the go. The only thing that I didn't like was the lancets seemed to be more expensive than most...but after I received the meter, I quickly realized that the lancing device will hold the cheap walmart lancets-I think I paid about $4 bucks for a box of 100,and they're pretty colors which is also a bonus. Yay for saving money!

I also have this case from walmart-it was about 5 dollars I believe. It is so much cuter than the average black pouch that meters come with. If you haven't guessed already, I am all about adding personality to my medical equipment.After all, I am the one who has to deal with it all.

3-This isn't quite a big expense, but something else I mail-order in bulk are alcohol pads, gloves, and tissues. I can get a much cheaper deal online than anywhere in stores.

4-I decided to go get a BJ's membership(I'll make a post about that later) and picked up a case of 24 Boost High Protein for 24 dollars. This is a great savings! Walmart had the original boost's on sale for $9.99 for a 6  pack. That let me save about .66 a piece.

As you can see, it's not much of a payday fun day. However, I am grateful everyday that I am at least able to afford everything that I need to try to stay as healthy as I can.

The reality is

Working at Starbucks, I get a lot of people asking me questions about my life and health. Two of the main questions I have come to expect is-1. How do you go on living so happily? and 2- Are you afraid of dying?

How do I go on living happy? Well, being depressed isn't going to help the situation at all. I could sit at home and sulk and become anti-social, but what good will that really do? I really feed off of my own happiness. When I am happy, I want to be happier-I don't think about what's to come. The only times I really think about my current situation is 1-when I'm at the hospital or doing treatments, or 2-when I'm really just having a bad day. I just don't see why people dwell on it. I want to work up until the point that I can't anymore, and see people, and experience things that some people don't get the chance to do because they are dwelling. I do things to make me happy. I travel, I read, I work, I go to school, I spend time with my friends, I exercise. Of course I won't be happy if I sat in my room all day. I make myself happy by doing things.

Dying.Now that is a tricky one. I realize that I am living on borrowed time. I realize that I am one of the lucky ones from my generation that have made it this far. I don't take that for granted. The actual death doesn't scare me. I know it'll happen eventually, it happens to everyone. Just because I have CF and I have a possibility that I won't make it as far as everyone else-it doesn't change the fact that it's death. The only thing that hurts me necessarily, is when I think about leaving everyone behind. Some people spend so much time taking care of me, making me feel better, and I don't want to put them in pain.

But why do we have to dwell on this stuff anyways? I read this quote last year-it said "Be afraid of an unlived life. You don't have to live forever, you just have to live." And that's what I'm centering my whole life around. There is no reason to constantly think about death and dying-that'll take away from your living.

Making it in the real world

Well. My colonoscopy came back with terrible results. We found more problems than expected and quite frankly, I'm having a hard time letting it all soak in. I just keep telling myself that I don't have time for this. I'm not sure if it's not having time, or the fact that I am scared out of my skull that something else is wrong. Do you ever feel like there are a million arguements going on inside of your head? That's how I've felt for the past 4 days. I haven't even been able to blog because I just feel like my thoughts are going in circles and circles. I am going to have to start infusions and new medicines to try and help my colon issues out. I have to do this on top of my normal treatments and clinic appointments. On top of being a full-time student. On top of working 30 hours a week. On top of going to an internship 16-20 hours a week. I don't know how to handle it all. I don't know how at 20 years old, I am already supposed to prioritize my life and give up things that are important me due to my health. I try to talk to my friends and family. They are all super supportive but it's always the same answer in the end "we'll get through it.". I suppose I can't expect them to say much else, or to fix what I'm going through. I just wish there was some guidance somewhere to make this easier. I don't want to sound mean and say they don't understand either, but sometimes that's just how I feel. Sometimes there is just so much pain, hurt, and confusion in my life that I wish I could share with someone, but that would be asking too much. Overall, I would say this post is pretty pointless, but I just had to get some of this stuff off of my chest.