Accepting the changes

I have to be honest for a quick minute.
I hate change.
I despise going to the doctor's and my medicines changing, or there's a new study, or they think I have just eliminate this, or add some of this to my diet, I will see some changes.

So as to no surprise, when I first heard that I needed to begin eating the FODMAP diet for my entirety(instead of just doing the essential diet, and then going through the challenge phase), I was more than a little disturbed.

How are you going to tell a recent 21 year old that everything that she envies in food-doughnuts, chicken nuggets, everything fried and covered in grease, is a no-no?

At first, I said too bad. I wasn't going to follow it. The doctor's could kiss my butt. I would try to do FODMAP-and I would fail by lunch-time, and then over indulge and candies and chocolates and everything fattening in the world.

But after my endoscopy, I learned some disheartening results. Because I chose not to listen, I have now developed celiac disease and the bacteria that was once growing in my stomach, is now all up in my esophagus and wrecking my body. So the doctor gave me the option. I could continue how I eat, and remain in pain and cause my body more harm, or I could get over my stubborn attitude and actually follow their advice and maybe gain some relief.

So now I sit here. Spending my time researching, studying, reaching out to fellow FODMAP foodies, and trying to learn more about this way of life and figure out how to follow it.

As of right now, I am on Day 2. Yesterday seem to go fairly well-I had to splurge and eat some cheese(ok-so I didn't have to, but I didn't prepare in advance so I had to eat what I have) but it seems to go fairly well.

This morning I actually woke up on my own, without my alarm, and with full alertness and energy which hasn't happened in I don't know how long.

Will I stick to it? I can only hope. I only have so many options left.

Know anyone on the fodmap or have tried it before? Let me know!

I will post a picture of what exactly the fodmap is so everyone can have a little glance!

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? 

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.

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

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.

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 :)

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.

 

 

 

 





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?

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.

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.