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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); and sometimes I will blog about past experiences ( like the time I shoved a styrofoam cup up my nose... don't ask).

I will constantly call myself a CFer ( a person with CF), even though it is not PC...Technically, I should write a person with CF, however I don't think  CFer has a bad connotation, I wear my CF proudly like a badge... and it's shorter and I'm lazy. Take your pick.

Big Outcomes/ Big Decisions ...

It seems everything in my life is "pending" right now.
1. I've applied to Grad School, but don't know if I did for the right program
2. I finally, at the age of 26, I got my DNA mapped, but don't find out for a few weeks which mutations I have...


If I have the G551D mutation, there is a new drug called Kalydeco, which specifically targets a faulty gene and its protein product, CFTR.


If I don't get into grad school, then I have to figure out what to do (career wise) and what my next steps are; however, I'm just as anxious about my DNA mapping!

What do I do to keep my mind off it?

Keep busy. work, work, work. work and design websites... and read. That has been what I do in my free time for the last month. Which is why I have decided to finally start a blog.

 







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Updates Galore!

Big News, Big Times, Big Change: I had my post hospital Doctor's appointment on April 21st and it went well. I posted a video on my CF facebook page. My weight is back on track, heading up. Also, my lung function was around 55%, so that's almost my baseline. I got to take my needle out that night. OH BOY!! I loved being needle free! Whoohoo no more IVs!!!!! In the last week I have been super busy with a few different things. 1. Work. I have a new client AND I had all my post licensing webinars & exams this last week! 2. More CF Foundation Volunteer work. I held a presentation in my home town, where I discussed CF, the different mutations & severity of classes, as well as fundraising for great strides. I talked about the history of the CF foundation, care centers, and more about our local IL CF fundraisers. Overall, it wasn't a big turn out, so I was a little bummed. My hometown has always supported my CF cause, so it was disappointing not to have a good numb...

Updates!

 Hey everyone! Sorry it’s been a while. Covid struggles have been all around and we have been focusing our on our kiddo and current life situations (jobs, home, everything really). We have been posting regularly on the Facebook page (www.facebook.com/CherizCFPage). We will keep you updated on there for now,  because we are doing some big changes to our current blog! Stay tuned!  In meantime, message our FB page if you need anything. Keep safe and stay happy.  We will be back. Promise! 

Today's BIG Appointment

 I discussed last week about my recent struggles & goals. I have been dealing with a lot all at once! Family planning (update on that in 2 weeks), my Grandma's funeral, lower lung function. Through it all I have remained very compliant with my meds! My health is VERY important to me. So this last weekend I took my vest machine, wabi sterilizer system , and packs of ensure to my parent's for the weekend. I wanted to make sure I did everything. While it was a sad occasion, it was still pleasant seeing almost all of the family together again. Actually 27 out of 29 of the cousins made it to the funeral. Grandpa is in the middle of the picture (can you find me?) LOL   On top of my medications I have been doing some dancing & walking, but no jogging or anything. I'm still counting calories on my fitbit (hitting over 3000) a day (& 40 grams of protein, 50 grams of fat at least). I knew I was feeling a bit better than before, but wasn't sure what to expec...