Posted on December 23, 2013
Hello, my name is Elizabeth and I have Cystic Fibrosis (CF). CF is a genetic lung disease that causes the mucus that lines the lungs to become very thick and sticky so it traps in bacteria that cause infections, and basically drowns you very slowly. If you’re reading this you have obviously stumbled upon my website. The reason I have this website is so I can share my experience as a CF patient through social media. I want to spread awareness. No one really knows about CF therefore they don’t really care. One way to get people to care is let people see CF in it’s raw form, through a patient’s eyes. I don’t sugar coat anything, and I don’t make things sound worse than they are, either. Now that that’s out of the way, let’s get started. 🙂
So lets start at the beginning. I was born into the arms of a drug addicted mother, and a father that was nowhere to be seen. My mom was young and everyone says she died. That’s all I know about her except her first name. I was basically changing my own diapers and eating out of trash cans. When I was three, CPS came, took me away, and put me in foster care. In the following year, I was sent from foster home to foster home. I witnessed abuse, and I was abused. I have seen and been through things no person should ever have to endure. I repressed all of those memories, but they still affected me subconsciously. Then I started getting flashbacks about a year and a half ago.
In the 7th foster home I remember being told to clean the roof. I would climb up the little ladder on the side of the house, get on the roof and throw all of the leaves off of the roof. While I did this, they would throw sticks and rocks. I am not exactly sure if they were throwing them at me to hit me, or if they were just trying to add more stuff for me to clean up. I remember I was only allowed to drink soy milk or almond milk because they thought I was lactose intolerant. I wasn’t, it turned out to be the CF. I remember it was a jewish family, and I went to a Jewish preschool where we made Menorahs.
I remember going to the zoo where we met with this couple. A blonde lady and a bald man. My foster parents talked to them and I can’t really remember much about what happened next, but I went to stay with them for a little while. Eventually, I came to stay with them as their foster child. That was in May, and then that November they adopted me. They are the best family I could ever ask for. I am very blessed to have a crazy, loud family that loves me unconditionally. I remember at my adoption in court the judge asked me to tell him my name, with my new last name. He also asked me if I wanted to change my first name and I told him no.
Not too long after I was adopted I got a very persistent cough. My mom started noticing that I was going to the bathroom a lot and I didn’t have proper hair growth. She took me to the doctor and told them to give me a sweat test. A sweat test is where they put a patch of gauze on your skin for a certain amount of time and then they test the amount of salt in your sweat. CFers are pretty salty. They refused to, saying that can’t be what it is. My grandpa who was a physician got tired of this cough and ordered a chest x-ray for me. In my X-ray I had a lot of white where there should have been black. My mom took me to the doctor again and told her to test for Cystic Fibrosis. Finally they did and it came back positive. All of our lives changed that day.
I used to have to go into the hospital once a year for a “tune-up.” In 6th grade I went more than once. Ever since then I have gone in more and more often. When I was 15 years old I got a feeding tube to help me get extra nutrition at night. I was absolutely against it and it sent me into a slight depression. When I was 16 I was told that my lungs were so unhealthy that they basically didn’t function by themselves anymore. I needed a transplant if I wanted to live more than two years. Two years have passed now and I am still alive, but I am fighting very hard. I go into the hospital about every other month for two weeks at a time.
- Next s