Skip to main content

CF- minor problems, but awesome trade-off


CF: Good and Bad: The Trade-off.

I noticed tonight while shoe shopping that it is really hard for me to shoe shop. My feet are a size four, which ladies sizes start at a 5. Shopping in the kids section means there are no heels and all the flats have tons of glitter and bows, not to mention tennis shoes are themed with cartoon characters like Dora the Explorer. So, I tape up heels on the backs, take them to the shoe repair shop and pay to have them made smaller if possible. I also stuff toes with kleenex and try to find heels with straps that buckles around the ankle to make sure they stay on. My right foot is smaller than my left due to my Cerebral Palsy. I'm very fortunate my CP doesn't affect me too much. My right hand is somewhat "clumsy." For exaple, I can't tie knots very well. And  lately, my right eye has been starting to wonder off to the right.. But overall, not too many problems.

My CF obviously effects me a million ways medically and time wise I do lots for it. But it is the simpler things that bother me. I'd do ten more therpies a day if I knew it would mean I could hold out the longer notes in choir/musicals. I hate knowing I will be the one cutting off too soon or sneaking in a breath. Myvoice and I have a hate/love relationship. I love that I have weird voice. It is technically deeper and kinda breathy, but I'm soo bubbly and cheerful it comes off more higher pitched. But people always comment on it. I like having the CF voice when it comes to talking, but hate it when I'm singing. When I'm on Tobi or some other meds, it messes with my singing voice. My range is gone and my high notes non-existant. I love acting and dancing sooo much, but with my lack of consistency in singing I hardly ever audition for leads in musicals (especially if songs are higher). I prefer the comical side kick when in shows with singing.

Seems silly, but out of everything, the surgeries, the hospital visits, etc, the things that upset me most are my singing voice, right side being affected by CP, and shoes/swimming suits. These may seem silly, but It's the truth.

Here is why those small problems are nothing when I look at what I have gained:

 I have a very high pain tolerance. I can pretty much do any medical procedure to myself. This might be weird, but I'm proud of that. I like the fact I can stay calm and focused enough to put a G-tube down my own nose. I could give myself an IV or take my own blood. I don't get grossed out ever, I have watched them take a hook up inside my vein from my thigh to near my heart before. I think this medical background I have helped to inspire my love for science and understanding how things work. This is why I love Geology and Psychology, both were undergrad degrees where I could really analyze data, etc.

I'm a very good multi-tasker and am extremely goal oriented. I hate quitting or giving up, my CF has made me a fighter. Plus, look at all the life experiences I have had. Meeting patients with all types of problems, meeting volunteers, doctors, having procedures done, and I had a dream granted for me when I was 10 (by the Central Illinois Dream Factory: find out more about them Facebook Group for CIDF. I'm pretty sure I can handle anything life throws at me thanks to my CF.
Labels:

Comments

Post a Comment

Popular posts from this blog

First blog: Hello

My first Blog: A little About Me I'm not sure why I have decided to start a blog, however, here I am.  I have honestly thought about writing about my life for years, but have always chickened out. I have finally decided to share the experiences life has thrown at me. The biggest reason I have been asked to blog by people is because of everything I have dealt with medically. I have Cystic Fibrosis and a few other medical problems...This is probably the best reason why I should blog. I can relate to others who are dealing with medical problems, however,my CF is also why I did not want to write this blog. CF can be embarssing and annoying sometimes... but it  has helped define who I have become to be as a person. Therefore, (yes, even though I want it cured) I don't hate having CF. Let me start off with some basic info and statements. I'm 26 yrs old and have dealt with CF all my life. In this blog you will hear recent stories (good, bad, embarassing); a...
Read more

Close to a Cure?!?!?! and Thank You!!!!!!!!

Help Us Find A Cure & Thank you! Lots of new meds and treatments are being researched thanks to the CF Foundation and the people who support it! Thank you soooo much everyone for supporting me and the CF GreatStrides Walks! I hope you enjoy hearing about the cool new ways steps are being taken towards finding a cure for CF and how everyone has helped me and us (the cf community)! New Treatments And Break Throughs: As you may know, from reading my last couple blogs. Some exciting news was released!  VX-809 + Kayldeco Phase 3 (6 month clinical trials) has started! Which means if all goes well, this could be on the market in the next year or two. This drug helps target the actual faulty gene. It will help improve our lung function (hopefully gain some back, the part that isn't damaged) and will help us to slow the decline of our lungs health tremendously! This is the treatment for my mutations!To read more about this new treatment click Here! Also, there are other medic...
Post a Comment
Read more

Holding Down the Fort

My husband, Andrew, is currently at Wartburg Theological Seminary and is starting his first week of his second year there. Every year he lives on campus for one week. He enjoys starting each semester on campus where he can build friendships with other students and professors. It's the only time he is on campus. Usually he does long-distance learning, online, from home. It was the only way we could manage him doing a four year Master degree program while working. This week is the hardest for us. However, we have something on Thursday and Friday this week, so Andrew will only be gone 3 days instead of the typical full five. So that will make this week a bit easier than the other semesters. It's hard for Andrew to be away, although I know he is having a blast. We send random pictures back and forth like a book he may be reading or a game I may be playing with our kiddo. It is hard for the kid(s) to not see Andrew every day. We are foster parents and stability is a BIG issue for ...
2 comments
Read more