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.