I’ve been on it for 3/4 days now and I am major losing my voice does it happen to anyone else? Is there anything that prevents this? Is just because I have a frozen vocal cord?
I was on tobi and it completely wiped out my voice… to the point where I couldn’t talk at all. So my doctors switched me to cayston instead and I love it.
When i started inhaled tobi for the first time it made my voice disappear. The doctors told me to drink A LOT of water and it helped. I think it removes the coating of tobi that is on your vocal cords or something… Eventually my body got used to it because i no longer get hoarse but I don’t know if that is something everyone should expect or if i’m just weird.
So the owner of the Financial Planning firm I am interning at knows that I have CF and knows what it is because his kids have it and this makes understanding why I cough sometimes and do weird things like that soooo much easier. It makes me happy that my first experience in the work force dealing with my disease is a positive one because I know that will probably not always be the case. Yay.
I’ve been working out a lot recently. Feeling a lot better than I had been before. I was going to write a lengthy synopsis about how sick I’ve been and how I’m back on track but I’ll spare you the details. Working out has been very rewarding and I see the changes- not only physically but mentally and emotionally as well. I am glad that it is summer.
I finally went to the Dekalb Farmer’s Market today and it opened up a whole new world of new things to try.
It was a little overwhelming so I got green onions as my new item of produce because I recognize them but I haven’t cooked with them yet. There were a lot of fruits and vegetables that I had never even heard of before and I just wasn’t feeling that adventurous today. I also got my first ever Georgia peach and a lot of other delicious things! I’m thinking I might make this a weekly trip. :)
It’s summertime again. I’m working out again.
Sososososo happyy. Weeeeeeeee
My brother got married this past weekend and the wedding was perfect. I will not even attempt to use any other adjectives because none of them will do it justice.
The top picture is the bride and groom (aka my brother). The next is the lobster we had for the wedding rehearsal dinner. The third is the vineyard where the wedding took place. The last picture is me, being the best bridesmaid ever. :)
I’m starting my internship tomorrow. Both my brother and I are growing up and it’s scary to think about. But
I’m we are both definitely happy, and I think that is all that matters right now.
Meeting that boy and talking to him about CF got me thinking. A lot.
I met a boy with CF today. We’ve been sitting next to each other unknowingly for the past 2 weeks in our summer class.
Yup I noticed that as well, decided to leave it out.
I wrote a long paragraph about why this shouldn’t really be concerning, but I’m not sure I want to get into this.
Long story short, CF isn’t the only disease that matters in life. Sorry.
Fun fact: Cystic Fibrosis accounts for 14% of all lung transplants in the US. (according to Wikipedia)
The parents of a 10-year-old girl dying of cystic fibrosis are fighting organ-donation rules that require adult lungs be offered first to adults, who are in less serious need than their daughter.
After months of searching and interviewing I successfully landed an internship that will last for an entire year which means I already have something lined up for after I graduate! Woo hoo.
I didn’t just post this to brag about my internship, no no no, my life is not that normal.
The head of the financial planning company that I am working for has two kids with CF. Yup, that’s right. He’s a big philanthropist for the CF Georgia chapter as well.
I mentioned that I have a blog about CF and that it personally affected me during my interview. I wasn’t really sure where that would get me, but I guess it wasn’t a bad thing!