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.

Growing older sucks

Ok. Everyone knows that when your 50 you are supposed to start receiving the "dreaded" colonoscopy. It's important for everyone to do to make sure that you stay as healthy as you can. However, quite frankly I am tired of the bad rep that they get. Obviously, if you read my blog, you know that I am younger. But with the joys of having CF and with a lot of my issues being digestive, I had the pleasure of receiving my 3rd or 4th one of these bad boys last week. So I thought this would be a great place to share my experience to show everybody-Hey,it's not so scary or awkward or embarrassing. Sure, you don't want to go around bragging about it, but in reality it's no big deal. So here's my week outline...

First. You get the pleasure of doing a liquid diet. For most people it is just the day before the procedure-but lucky me, I had to do a 2 day liquid diet. You get to indulge in Popsicles, broth, water, Gatorade, and clear gelatin.The only tricky part about this step is staying away from the colors red,orange, and purple. I learned the hard way that those are the majority colors of Popsicles.  However, I was able to find a citrus assortment box with yellows and greens so I was good to go.

Then you get this bad boy. My specific prep is called golytely. This will be the hardest part about the colonoscopy. It tastes absolutely awful-and depending on your doctor you will either drink it all in one sitting or you'll do a split bowel prep. I had the pleasure of doing split bowel prep, so I drank half Wednesday night and then had to get up early Thursday morning and drink the rest of it. It's hard to drink-but you gotta do it.

Procedure day is the easiest day-unless you're like me and have a procedure that's scheduled at 2 pm. That's right-I had to go allllll day without anything to eat or drink. I had the strangest cravings by the time I was put to sleep. But anyways, you'll go to the hospital, get an iv, they'll take you back to the procedure room, and then an about an hour-two hours you'll wake up. You have no memory of what happened, and my doctor's had even waited until I was asleep to lift my gown up.




See? Not so scary right. Certainly not scary when you think about that not getting colonoscopies could increase your chances of not finding cancer and other stuff right away. I was in a little pain afterwards, but that's also because I had the pleasure of receiving 15 biopsies due to my condition. I am pretty sure that is not routine. And at the end of the day, you go home to the comfort of your home with knowledge of how your insides are looking.

Positive thoughts to start the week

I keep my blog so that I can really inform people about the good,the bad, and the ugly about Cystic Fibrosis. To me, my blog is about letting people into my life to see it's not always rainbows and butterflies. But I've noticed that the more that I post, the more I really don't post anything positive at all on my blog, or anything too much more than stuff that's Cystic Fibrosis related. So as I read other Cyster and Fibro's blogs-one particularly caught my eye. It's a woman named Colleen over at *Live*Laugh*Love*Breathe. She has a feature on her blog called Positive Thoughts Thursday.Every Thursday she takes the time to point out the positive things in her life-whether it's health related, family, love,work, or whatever. It really inspired me as a new blogger to really focus on taking some time to show people the positive in my life too. Of course my life is a roller coaster ride due to CF, but as you can see in my about me-I consider my life a beautiful disaster. Her posts really opened my eyes that I need to share the good too, and to show people that CF doesn't control my whole entire life. So with that being said, if I ever feel as if my blog is just being a depressing place to be or needs a little cheering up, I'm going to share a few things in my life that are going right in my life!

• This week(February 15th actually), I get to celebrate being with my amazing boyfriend for 4 years. It has been an awesome 4 years and I can't believe that I have had the privilege of spending it with someone so special. 
• With all of my health issues going on, I am still attending school full-time. This is my last semester and this is the first time that I have absolutely loved all of my classes. The people in the classes can be a little nutty, but the classes are really great.
• I am so glad that I have such a great GI team at Johns Hopkins. Through this whole process they have been extremely punctual and helpful. Within the 2 weeks that they have gotten involved we have already had an appointment with them, labs done, CTS and ultrasounds done, and my colonoscopy is scheduled. 

The Unknown of Cystic Fibrosis

When I get sick, I always wonder is this CF sick or another kind of sick? Does anyone else do that? Most of the times I brush it off as CF sick, but as I mentioned in my last post,something has been going on lately that I haven't been able to shake.

Insert IV here.

That's right.I broke down and went to the Emergency Room. After my sugar continually kept dropping, and I grew even more nauseated and dizzy, I knew I needed some medical attention. The results from the ER were that in a mere 3 days in between getting lab work done from my doctor, and this day, I had developed a serious bacterial infection. When you stack a bacterial infection on top of my current symptoms that are being looked at by GI-we had caught my body beginning to crash.The ER started me on some rounds of antibiotics and were able to give me some insulin and fluids to get me feeling at least better than what I was when I went in.I'll be following up with GI on Friday for the other problems that I'm having, and hopefully I'll be able to get back into my little routine of a life soon :)