Wednesday, December 11, 2013

Tis the Season!

I spent all last week in bed.
On Tuesday/Wednesday we suspect that I had a seizure, with several small ones following.
When I finally went to the hospital on Friday, they diagnosed me with low magnesium but are sending me to get some EEG's done on my head.
Since I started the mag supplement, I must say I am feeling much better! I still have a  migraine that won't go away even with fioricet, but I am regaining energy and almost completely back to normal.

With feeling better, I am ready to get in the Christmas spirit.
Over the next week, all of the presents I have ordered should be arriving and then my favorite part will commence-wrapping! I just love the look of wrapped presents under the tree.

I've searched the internet high and low to find a simple, gluten free gingerbread man recipe-which I have found and cannot wait to try it out.

I have borrowed Christmas movies, and hopefully, I will find some others on sale to purchase.I just love the movie Elf.

My schedule is all laid out showing who we are to see and when-I just love spending time with my family.

Most people get so stressed during this time of year-just make a plan, turn on some christmas tunes, drink some egg nog and relax!


Friday, November 29, 2013

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? 

Saturday, November 23, 2013

A week full of accomplishments!

Well, lets see here-I am a little excited today.
This week was the first week in months that I had more good days than bad.
Unfortunately, so many good days put me on the couch Thursday and Friday with a fever and unbelievable pain.

But back to the good days!
1-I got up around 8 am(some days earlier) everyday except for Friday. That is an easy way to add 4 hours to your day.
2-I was able to make it work on Tuesday. I worked for 6 hours and enjoyed every minute of it. To top it off, I even made it to my boring work meeting on Wednesday. I wasn't as much excited for the meeting, but the fact that I was able to make it made me happy.
3-I went to GI on Wednesday and made a lot of progress. All of my meds are being swapped around and were going to consider doing the surgery for my esophagus in January.
4-All of my appointments are now lined up and I am getting super excited for Disney!

What did you do this week?

Monday, November 4, 2013

The month of giving thanks!

I love fall.
I love Christmas.
I love everything that has to do with pumpkins, apples, gingerbreads, orange and red, and well you get the picture.

To be on bedrest while my favorite season is passing by is so painful-luckily I have a set of beautiful french doors that allow plenty of light and fall colors in.

I did make it to an apple orchard for the first time ever.It was so much fun to be outside and enjoying the fresh air. We picked apples, went on a hayride, and best of all I was able to spend it with two of my very best friends and my boyfriend.

So obviously, there are things that I am thankful for.
I can run a list a mile long: my life, my family, my friends, my boyfriend, my job, having the ability to take care of myself, etc but there is one thing that has stuck in my mind.

Don't get me wrong-I think you need to give credit where credit is due and I try not to take advantage of things I have been gifted, but if I didn't have determination where would I be really?

I would be sickly because I wouldn't be determined to fight.
I would be lonely because I wouldn't be determined to put the effort back into relationships.
I would be swamped with medical bills because I would've given up on work a long time ago.
I would feel worthless because I wouldn't do anything to make myself happy.

Determination is what gets me through each and every other day, so for that I am forever grateful.
What are you thankful for?

Sunday, November 3, 2013

Learning to Run

To follow my last post, I have decided that taking up another exercise habit is a must.

I love spinning class.
I hate paying $40 a month for a worthless gym otherwise.

We moved to a lovely community in August and I think it would be the perfect place to start walking, and learning to run.

I just feel as if I am on a search for something.
Anything to make me feel complete or worthy again.

I used to love running until my lungs started to suck again.
I was down to 10 minute miles-I was about dead afterwards, but I was doing them.
I want to do that again.
I want to have the power over my own body again.

Saturday, November 2, 2013

Forgetting the Basics

Sometimes, especially when I am down with an illness, I forget to keep up with the basics. Making sure when I eat, I eat balanced meals(or at least healthy foods), exercising, sleep patterns, all seem to go out the window. It normally isn't a big deal-I fall off of the track for 3-4 days and hop back on.But this time, it's been 4 months. I have forgotten what it is like to function like a normal person. I have neglected my body and honestly, could be causing it more harm than good. I believe that I have decided to join the gym again-it is the only way I can hold myself accountable. If I am paying for something, I intend to use it-even if it just to attend a yoga class or spinning.

There are just so many things you can do for your health, I don't know why I have never tried before. There are so many things to look into-juicing, herbal remedies, etc. I hope that this is a start of a new journey :)

Wednesday, October 23, 2013

The mass that wouldn't go away

To update you all on my recently scary adventures:

I went to the surgeon today to talk about the mass that has decided to make itself at home on my right ovary. I went into the appointment terrified of what the doctor might have to say. Was I going to need a full hysterectomy? What are the chances of it being cancer? There were so many questions that I have had for so long that I was begging for answers. Luckily, he was just as prepared as I was to talk about the findings. There is no need for a hysterectomy at this time. They are running the screens to see if what I have contains any pre-cancerous or cancerous cells. But I always learned a new word today...

What is this you ask? I still have not fully grasped what tags along with this word. All I am completely sure of, is that I have this, and that it is not going away. 

A part of me was relieved, I for now, do not have cancer. But I am also in a way disappointed. I was hoping to just have this mass removed and to go on with my daily life. However, the doctor has made it clear that daily life isn't going to be quite the same anymore. I will be starting some new medicines, as well as continue to a genetics doctor to see if I carry the gene to possibly have Ovarian Cancer. So here I am yet again, fighting another battle.


Sunday, October 6, 2013

Prioritizing and Figuring Life Out

It has been a stressful week. We experienced a death and had to travel to NY unexpectedly to attend the viewing and funeral. When we arrived, we chose to stay at his deceased grandparents house-it's where we typically spent our time and seemed fitting that we continue to sit there. However, it was much different. Their house had always been untidy, but it wasn't until now that I was noticing all of the clutter-I'm talking birthday cards from the 1970's, dried flowers from 1992, and the list continues. As I sat there, overwhelmed, it really hit me. You don't get to take any of this stuff with you. And honestly, how much can a dried flower that's shoved in the back of a drawer really mean to someone? I found myself wondering about my own life. I started to do blog searches and pinterest away on how to de-clutter and figure out what you actually need. The truth is, none of us know when  we are going to pass. It can be from an ongoing illness or an instantaneous car crash. I have decided to go through everything in my apartment-and I mean everything, to avoid the hassle of whoever has to come up behind me and do the same. It's time to organize, figure out what's important, and figure out what isn't. That's all for now blogland x0x0x0

Sunday, September 29, 2013

the breaking point

I've always wondered what hitting a breaking point is like.Is it when you've hit a wall in your physical strength and just can't go on? Is it when you have suffered so many mental dilemmas between your prognosis and just wanting n g to be like everyone else? Or perhaps,it's all optional-you've shed all of the tears you can,been angry and blamed everything else....

As I sit here, physically,emotionally, and mentally drained, I can tell you that the breaking point doesn't feel like what it looks like in movies. It is a feeling of desperation-a feeling that that you would willingly give up anything you could to feel an ounce of happiness or satisfaction.

That my friends, is a breaking point.

Thursday, September 26, 2013

A day to process

I am not a big fan of feeling sorry for yourself. I constantly tell myself that you "just have to do it". But as I sit here, drinking a cup of coffee, and laying on my couch, I am well aware that sometimes you just need to remember you are not a superhero. I have pushed myself for far too long, and I believe those long hours that I have spent working,dancing, staying up all night, are finally catching up to me. I have never felt so weak in my own body, I have never felt so powerless. There is power in knowing that I have spent most of my life living on the edge, defying the odds. I am at peace with knowing that it is time to slow down. I realize that I may not be able to work forever, and maybe I won't be able to work at all. Hopefully this will all sort out with the upcoming surgery and treatments that I will be receiving, but if it isn't, it's ok. My favorite saying is, "It's ok to not be ok" and that's what gets me through the day.

Wednesday, September 25, 2013

The wait in pain process

It isn't often that I post about something in the mixing bowl, but today I am going to do just that.I left the gynecologist in frustration, tears, and feeling more anxious than I did before I went in. As many of you know from mass texts and such, there has been some talk about a mass on my ovaries. We have been trying to do everything to relieve my pain, and I just end up curled on the couch at the end of the day, wishing it would go away. After spending an hour in the gynecologists office, the only hopeful things I heard were that we were going to move on in the process and get a surgery consultation on its way. Other than that, we are almost stuck. The insurance will not pay for the surgery until I have two sonograms, and until I have reached my 21st birthday. Why until I reach my 21st birthday? My doctor believes it's due to the complicated risks associated with this type of surgery-there are many times a patient goes in for "exploratory" surgery and comes out with a full hysterectomy. I understand that I am just a baby, but it is overly frustrating that I have been handling my own medical affairs and necessities for 5 years now, and they are now beginning to question my ability to read my body. October 23rd is the scheduled surgery consult. It feels forever away, but in reality I know that it will be here before I know it. I have never had to wait so long in pain,and quite frankly have never reached this type of fear in my life. I can only expect the worst and hope for the best.

Thanks for being patient with me blogland x0x0

Saturday, September 21, 2013

The battle

Today is a new day.
A day that is tougher than yesterday.
There are still many tears to be shed.
Many fears to be relieved.
Questions to be answered.
Thoughts that have no solution.
Can we take a moment to grief our situation?
Or must we continue with a smile on our face, pretending like we are not broken inside?
The truth is, we are broken.
Suffering with more internal pain than most people tend to realize.
But we make the calls, inform the family, and continue on because that's what is expected.

Not anymore.
It is my time.
I will scream,cry, panic.
I will not be ashamed when the tear falls from my eye.

But don't take that as me giving up.
For the battle is not over until I say it is.

Saturday, September 7, 2013

Merry go round!

Good evening Blogland!

Clever title,eh? Well I thought about writing pumpkin spice lattes and antibiotics but I already took that title last year. I am writing you from my awesome couch in my awesome apartment due to having a not so awesome kidney infection. This is about the 4th or 5th time this year that I've had a kidney infection and I am having absolutely no luck with getting rid of it. There is talk of transplant due to low functionality but who knows what will really happen.

The human body is the most interesting mystery in life. It still baffles me that when there is an infection, you get so many medications. One to treat the infection, one to make you feel better because the medicine for the infections suck, one to make you want to eat, one to make you feel ok after you eat and I'm guessing you guys get the point. I am just looking forward to doing research and possibly doing a naturalistic approach to this. I am so sick of being so sick :(

Thursday, August 29, 2013

Today I am going to take the time to blog on some positive things in my life.Although there's plenty of bad that comes with CF, I don't want this blog to become a whine session.So with that being said,August has been an amazing month and I can't wait to share!

1. I am writing this post from the bed in my new apartment :) That's right, Me and the boyfriend finally dove into commitment and are now living together. it's quite the adjustment but I'm enjoying every minute of it.

2. I had a ph probe placed yesterday and had it removed today! There were no complications and now all I have to do is wait for the results. Although the results could come back terrible, right now I'm just proud that I made it 24 hours with an uncomfortable wire shoved up my nose.

3. I am really having an awesome time at my job. I am so happy that even through my health stuff I have had the opportunity to work. It's really great.

That's all for tonight!

Xoxo blogland<3

Tuesday, June 25, 2013

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.

Saturday, June 15, 2013


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.

Tuesday, May 7, 2013

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 :)

Friday, May 3, 2013

May 3rd-Day 3 of Awareness Month!

I skipped day two which was going to be diagnosis-forgive me,I'm sure I can hit that on another day.

Due to having a nutrionalist appointment this morning,I think that it's only fair to talk about nutrition and CF today.

For starters, there are two types of people with CF. We have pancreatic sufficient, and pancreatic insufficient. PI pateints rely on pancreatic enzymes to digest their food(talk about costly). Luckily, I am pancreatic sufficient, although as I go on, sometimes I wish I could just take a few pills and be done with it.

Something that is very important to do is to keep your weight up,or maintain a health weight. I normally do not have a major problem doing this, I can typically stay around 130 if I don't have an infection.

However, last year when I switched GI doctors- we found a lot more than we bargained for. I have a gluten intolerance.Now don't get me confused, I do not have a gluten allergy and I won't break out in hives or die if I have one glutened crumb-but my body doesn't have the capability to breakdown the gluten protein. So I started on a gluten-free diet(as much as I coulld) anyways and started to see minor progessions.

Well,my symptoms came back and they came back at full force-leading me to have some more testing done. I received my outcome today, I can no longer break down corn syrup(fructose), mannitol, sorbitol, lactose, or lactulose.

I normally stay to a high-fat diet, loaded with candies and sugars because that provides for better snacking. But now we realize that's doing more harm than good because my body isn't breaking down what I'm eating. It explains the gut-wrenching pains I get in my stomach, but sometimes you just want to eat like everyone else ya know?

As you can see, my body is slowly losing the ability to process anything. I am not sure about what will happen in the future, or if I keep gaining these issues, but as you can imagine my GI system is quite a wreck.

Wednesday, May 1, 2013

Awareness Month!

So with Cystic Fibrosis Awareness month finally here, I've decided to do something super exciting. I've decided to let everyone in to see my blog and to see my daily life! In my mind, you can't understand CF until you see it. It's too complicated of a disease to just explain it someone and expect them to understand. So for anyone new to my blog, Welcome :) Just remember, CF isn't rainbows and butterflies so some of my posts could possibly be graphic.

Daily Life.
Where do I start?
Guess we can start here. Now my room doesn't look quite like this anymore because I just changed it-but you get the idea. In this corner you'll find all of my medicines. In the four pink bins,you'll find all of my pills-labeled pain management, daily, pulmonary and mucus production, and digestive. I take about 34 pills a day-that range from narcotic pain killers to medcines to produce stool. Underneath, you'll find in the thirty one bag all of my nebulizer cups,tubes,inhaled medications and my devilbliss compressor. I'm currently on two inhaled medications, albuterol and hypertonic saline, and should do them twice a day. Over in the white cubbies, you'll find my overflow of inhaled medications, miralax, diabetes equipment, and carafate.

You're staring at a good amount of money. In fact, almost all of the money that I make goes to my CF. I spend about 200 dollars a month in prescribed medications, not to mention if I gain an infection and need more antibiotics or steriods.
Another huge aspect of my life is doctor's visits. I go to Johns Hopkins at least once a week. I see a pulmonologist, GI doctor, nutrionalist, endocrinologist, and will now be seeing an ENT doctor. This is my team. They make sure to work together to keep my body functioning.
Medicines and doctors are only part of my life-I have to live on a normal side too with work and school and social time. It gets overwhelming, but if I want to breathe, I have to do it.

Monday, April 29, 2013

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.

Thursday, April 25, 2013

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?

Friday, April 12, 2013

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

Thursday, March 28, 2013


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!

Friday, March 15, 2013

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.

Monday, March 4, 2013

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.

Monday, February 25, 2013

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.

Sunday, February 17, 2013

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.

Monday, February 11, 2013

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. 

Wednesday, February 6, 2013

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 :)

Thursday, January 31, 2013

2013-off to a CRAPPY start...

Yes, I did just use a terrible pun in the title of this post. If the topic of bowels offends you-then I promise that this post is one for you to ignore. I have always had backed up bowels-so when I woke up one morning with uncontrollable bowels, part of me was a little excited. I mean, this has never happened before! It was awesome! At first...But then, it didn't stop. So we threw out the idea that it was some sort of stomach bug. We have run some tests-and we are waiting for the results as of right now(Thursday). But since, my body has been on a steady decline. I have constant fatigue, I can't keep anything in my body, my sugar is low, and I'm starting to have some heavy chest pains. All I know at the moment is--this isn't a good sign.

Other bad things in 2013? We have lost entirely too many Cysters and Fibros already. 2013 isn't looking promising. It seems as if this is going to be a rough year for a lot of us and that worries me.

At least hockey is back!!!! 
This is me and my brother at the Sabres Caps Game 1/27/13