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 :(

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!

POSITIVE THOUGHTS
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

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 :)

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.

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.