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.

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