Nothing short of a roller coaster ride

The title just about sums this post up.
I have been M.I.A. the past few weeks with more reasons than I can count on my fingers.

FODMAP diet? Basically went down the drain. I tried so hard to stay dedicated, but just like everything, I gave up.
I am in the process of starting small again. I am on day 1 of being gluten free(which is one of the most important steps due to my recent diagnosis of celiac disease). It isn't easy. It's actually quite hard-especially when your favorite foods consist of chicken tenders and everything fried. But what can I say, I am trying and will continue to do so. Anyone have any tips?

I spent two days in the past two weeks in the hospital-one for constipation-I didn't really need to go to the ER but my doctor suggested to do so to make sure I wasn't obstructed and the second for not being able to breathe. When I checked in my oxygen levels had gone down to 83%.

What did I learn from this? It is going to be a cruel death when it comes time to kick the bucket.
I know, I know, I shouldn't think like that. But when you literally feel like your drowning and can't find air, it is an unpleasant feeling. Luckily after oxygen and 4 days of sleeping, I am finally feeling a bit better.

Yesterday I had a gastric emptying study. I have yet again lost the ability to want to consume scrambled eggs. I don't know how they manage to make them so unappetizing, but just the smell of them is enough to make me want to vom.
Luckily, I was able to keep them down and will hopefully get my results next week when I visit my GI doctor.

Life has been super busy.
It makes me wonder if I will ever have time in my life to do things important to me like take a nice vacation, get married, maybe even have a baby.

But for now I can only take life one day at a time.

Updating when there's no new news

I find it quite difficult to post when there is nothing to share with the online world. How's life you ask? Work seems to consume my life-I am back up to 40 hours a week and I also got a promotion to be a case manager assistant. This was so exciting to me and it has been awesome to begin  my journey.

As far as health goes, I seem to be doing ok. Routine and mental health seems to effect me more than normal. Although I am not seeing as much progress as I would like, I am overall feeling better. I had an endoscopy done yesterday-it showed some nodules, some plaque, and an even possible fungal infection. I am never surprised when I hear news like this. I even made the statement yesterday that I "always awake to bad news". It doesn't seem like something that I should grow comfortable with, but it is never changing. I hope and pray for good news, but as the saying goes, I always tend to plan for the worst. I should get the biopsies back within 2 weeks and then hopefully we will have a better understanding of what is going on.

I'll write again soon.

xoxoxox

Bringing In 2014

This post is obviously late, but with my schedule it has been hard to find time to engross in the computer.

For starters, I had an amazing time on vacation! Magical does not begin to describe my trip to Disney. Although my trip was exhausting(walking around parks for 4 days was not my friend), I had the most memorable trip of my life.

Here's just one picture from my trip. I will be completely honest, when they lit the castle, I actually cried from the beauty. If you haven't seen it or made the trip to Disney, it is certainly worth doing.


Then we come upon a new year. Reading over my posts from 2013, I had a stressful year. Not only were my situations stressful, but I made no effort to take care of myself mentally or relieve the stress.

Which leads me to my cheesy New Year's resolutions. I am not a huge fan of resolutions, but this year I feel it's necessary. My goal is to do what makes me happy, and to pick up some stress relieving activities. I spend all of my time worrying about my physical health and working, that I don't always take care of myself mentally.

Keep tuned to see what will be new in Rachel's world...maybe some yoga, or knitting? Who knows what this year might bring!

Finding a home

Yesterday, I hit a roadblock.

Actually, the road block began Wednesday night in the midst of our travels to my father's house. 

At 21 years old, I have finally come to the conclusion that my family will never be "normal".

Every holiday I must choose who I want to spend my time with.

This year, my family was spread out not only over one state, but two.

I was finding it hard to be thankful when I was stuck in this sticky issue.

Where do I go? Who do I choose to be with?

Then I remembered.

I'm breathing.

I'm not in the hospital fighting for my life at this moment.

Why does it matter so much who I am with?

What I am doing is most important.

Celebrating life, love, and happiness.

The tears then started to clear up, and I was able to enjoy my holiday with some of my closest family members.

How was your thanksgiving? 

There will be hope,but no help.

As I sit here contemplating my next visit with GI tomorrow, I can't help but think on the pessimistic side. I am not sure why there is nothing but bad news coming in my direction. Better yet, I am not sure why I am 20 and dealing with these battles. Being scared isn't an option anymore, I have spent too many nights crying and wondering and hoping for an answer. It is a sad reality that eventually, there will be no help. There will be hope, hope to think that I will continue on pushing, but eventually there will be nothing more left than a body crumbling to pieces. I can't let this thought process get me down. Negativity isn't my friend. But unfortunately it is a reality. I try to keep my posts light-hearted and funny. I almost find it comical when people can't find the humor in their situation. But sometimes, there is nothing light-hearted about the situation. There is nothing that you can do or say that can make the struggle ok, you just have to do it.

But with an update:

Life has been busy,like always. I follow people's blogs on a regular and it never seems to me like they do anything.I find myself sitting here wondering if people feel the same about me? I am sure that the computer can make it seem like life is whatever you write it up to be. Anyways. I started having more GI problems a few weeks back, bloating, gas,leaking, all that gross stuff that no 20 year old feels like dealing with when she's just trying to live life. I'll find out tomorrow about the progress of treatments on my colon and find out if I am having kidney problems. I never knew that life could be so complicated. But I guess that's what makes life interesting.

MIA

Good Morning Blogland!

I bet most of you have noticed that I went MIA-life has gotten crazy lately and I just didn't want to be negative nancy everytime I wrote, so I decided not to write at all.

What has been up in the world of Rachel might you ask? I feel as if this is a mountain that I will never see the top of. I had a crazy few weeks with trying to finish school up, started working full-time, trying to squeeze in time with my infusions and still stay on top of my treatments.

I would be lying if I said I have been completely compliant with my treatments. Actually, too be quite honest, I am not even sure how often I am doing my nebs anymore. I know,I know.Time isn't an excuse. I really entered a  mild state of depression for a little while. My pre-screen for transplant came out with negative results, and I have just had a tough time finding a silver lining. You see, in my mind my life is all wrong. I will be 21 in October, and here I am still living at home, barely graduated with college with an associates, and going to the hospital every week. I thought for sure that this will be the rest of my life-sitting in front of a computer doing research and writing blogs for the rest of my life with no hope for a future.

But today,I am writing on a positive note. I have spent the past few weeks reflecting on my life and trying to decide on where I will go from here. I have spent some great few days with my boyfriend and realized I am the most loved girl in the world. I finally have found a chance to partially live on my own and live with my boyfriend and that makes me happier than anything in the world. And my work has finally offered me some awesome health insurance which will make my life a lot easier.

So at the end of the day,you just have to look at the little things and appreciate them.

CF Awareness month: Nurses Week

So I'm taking the time today to give a shout-out to all the nurses! This is nurses' appreciation week, and as many of you can guess, nurses are a big part of our life. What most nurses don't realize though, is their job affects us. There is nothing like having an awesome nurse during your hospital stay. They have a tough job. There have been multiple times where I've puked on nurses, tried to hit nurses, probably urinated on them, and they keep coming back. This is what dedicated to your career means. I would never put up with half the things nurses do and still stick around. I personally have 3 awesome nurses.One for pulmonary, one for my infusions, and one for gi. They put up with me calling non-stop, comfort me, help me, and are really just awesome what they do. The thing that baffles me, is that not only do they do this for me, but they more than likely do this for everyone! It amazes me. So shout-out to all those nurses out there! We appreciate you :)

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.

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 :)

Oompa Loompa :(

I love candy.I love chocolate and ice-cream and cake.Basically, you could stick a straw in a bag of Domino sugar and I would suck it up and chase it with a nice glass of Mountain Dew.So it's no surprise that as I sat across from the dr today and she was describing this new "insulin resistance" that my body has, I was quite emotional. How can I be 20 years old and have diabetes already? Well, the truth is, it stems from the Cystic Fibrosis. I was expecting it to come eventually, as many people have warned me about it. So I get handed this packet and I have no where to start? So, here on my blog, I'll be able to document my progress,my pitfalls of this Diabetes journey. I have to follow the a-typical diabetic diet for two months and then get my blood insulin levels checked again. These blood insulin levels were at 125 and my fasting glucose was over 150 both times. So here's a new journey and Happy Birthday to me!

It's fall which means Pumpkin Lattes and Antibiotics!

Ok,so maybe I'm a Negative Nancy. But every fall-I end up getting severely sick.Maybe it's the change in weather, maybe it's the stress of school starting on top of everything else I have to do but it never fails. Today I woke up and I was fighting for air. Not exactly the best feeling in the World. I now get to spend 3 out of 7 days next week at the doctor's. At least there's a beautiful view of the leaves changing from my window.

Great Strides and the announcement of a lifetime

I know I know, I haven't posted in forever but I have been super busy! I participated in the Annapolis Great Strides Walk on June 2, and let me just say it was an amazing experience! My team raised over $2,000 and the whole Annapolis chapter did over $300,000! I am already overly excited for starting next years fundraising. At the walk, I also received amazing news from a lady from the Cystic Fibrosis Foundation. I am without a vest(an airway clearance device which is almost mandatory when fighting CF), due to financial reasons. What average 20 year old who goes to college full time can really afford a device that costs $20,000?? Anyways, the lady came up to me and basically said they're going to get me a vest. I have never been so happy in my life! All I could think about was, Wow this is why we need to get more help for the foundation. This foundation is a blessing to my life, and I'm sure I am not the only one. So leave my page with this thought, think about how you might be saving a life when asked to donate to CFF.