Tuesday, July 8, 2014

How I Take an Active Part in Curing CF & more!

What I'm Doing:

Well, life seems like it is pretty much back to normal now...Whew, the CF Walk in Princeton went well, I'm just filling out the "Thank You" envelopes I'm sending to our sponsors this week! I'm sooo beyond pleased with how the Cystic Fibrosis Great Strides Walk went in Princeton! I'm still in awe that we raised over $13,300 for CF Research! I enjoyed every bit of that day and can't wait for next year! Please click here to read all about the WALK! It was an amazing day!

If you want to keep up to date about what else Cheriz's Supporters is doing to help cure CF or learn more about new advances being made in medicine for those with CF- "like" our Facebook page here!

So what else is going on in my life? 

Now that the walk is over, I'm concentrating on getting everything packed up and ready for the move to Dekalb area! So excited to move, the area will be much better for me, less driving time, more time for focusing on my health, etc.

How else do I take part in curing CF?

Well, this Friday I have my Clinical Trial starting, yay! I can't say much, but I'm excited for this trial (its a new treatment for me)- the last trial I was in, just consisted of journaling after doing meds (that I already do). I love being involed in trials. These trials are the only way to find new drugs that help fight our CF. I've been in plenty of trials over the years. Some drugs that have been on market that I was a clinical trial subject for would include: TOBI, Pulmozyme, Enzymes, Cayston, and now this new one! I love being able to be an active part in curing our CF! I do this in as many ways as possible. 1. I'm active in clinical trials ( in December 2014 I will have been non-stop in trials since Novemeber 2013). 2. I fundraise and raise awareness of CF. I do this through my blog and also on Facebook through our support page ( listed above).

It's important for me to do this, because I want to see changes for CFers!!!

note: CFers (people with CF) yeah I know it's not people first (PC) BUT I like the word CFer (sorry if it offends anyone). Many people say "CF doesn't define me..." And I agree. I'm not CF, I'm Cheriz, 29, outgoing, loves dance, theatre, mini golf, laughing architecture. And would spend every minute around my family and best friends if possible. That's who I am, however, CF DOES affect almost every choice I make. so it does sort of - define me- or my abilities. So I do heavily define myself by my CF and that's okay. I don't wear it like an excuse or something I'm ashamed of. Its just a part of me, like my height... Not a big deal. But yes, I refer to myself as a CFer. 

I want to see changes for CFers, a better future, a longer life and a happier life. So not only am I active in trying to cure CF, but I try my hardest to stay as healthy as possible! Life is like a roller coaster, so I just try to stay as healthy as possible. So far I've been doing really well!

Shockingly.. in 2014: I was only on oral pills of CIPRO from Jan 1-10th and haven't needed any extra antibiotics, IVS, or meds. And I have been out of the hospital since November. I've been around 105 lbs since October without using my stomach tube. And Doc agreed to let me get it taken out (as long as I promise to stay up in weight or in goes a NG-Tube -down my nose). And I agreed! Here is the blog I wrote about how I felt about my Stomach Tube and why I wanted it out after 15 years of relying on it! Read about my relationship with my Stomach Tube HERE! It was something I wanted out and I have worked hard to stay healthy enough to not need it and at some point I may drop in weight (due to illness), but I will just suck it up and put the nose tube in. Its better than worrying about my stomach tube. So I got it taken out the monday before the CF Walk. Read about how I got my Stomach Tube out HERE! It's still not healed yet (2 weeks) and is leaking a bit, but not as much. So I hoping that means it is getting better and healing correctly. If if it is still leaking on Monday I will have to call the Surgeon again and I will bring it up to Doc. B on Friday at my clinical trial too!  But I'm sooo excited I'm getting back on track healthwise.

Yep you read that right! No IVS, No problems healthwise in 2014! So hopefully, I will keep this up and my stomach tube hole will heal up nicely.

I just need to work out and start adding more exercise to my daily routine to be at the healthiest possible, which is my goal. I'll keep you posted about my stomach tube, exercise, and health! AND AGAIN:

for supporting the CF Walk, the cause, or reading this blog!

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