Skip to main content

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!
Labels:

Comments

Post a Comment

Popular posts from this blog

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
20 comments
Read more

Post- Surgery Appointment

Post Surgery Appt: As you prolly know, I had Laparoscopic Triple Hernia Surgery last Tuesday. Here was a picture of me devouring a piece of bread so I could go home afterward the surgery (4 hours post surgery and 20 mins post waking up from recovery). I was ready to go home! Today I had my post surgery check up. He said everything in the surgery went well and besides the finding the 3rd hernia there were no surprises. He pointed out where the staples/stitches (they are holding the mesh in place) are in me. I have two on each side at the end of the mesh (so 4 on top) and two down farther in my groin. Apparently, I just have one huge piece of mesh that runs the width and length of my whole abdomen/groin area. Bahaha. I am Inspector Gadget after all. He said a few more weeks before I can lift stuff or exercise. Also, he said the area where the staples are will hurt when bending or twisting. However, I only notice really when I twist or turn too fast. Overall, it was a nice appointment
10 comments
Read more

Theatre and Life...how to fit in CF?

Fitting CF into my life: Cystic Fibrosis won't be hard to fit into my schedule right now. As I just finished my job watching my babysitting kids for the year. I'm currently job hunting and taking classes on Mondays at the local community college (as a pre-req for Grad programs/and for fun). Mulan Jr, just ended today. We had two shows. Back-to-back performances are harder, since I had a busy day before the shows, I didn't get a chance to do my meds before the shows. Therefore, I end up bringing my therapy machine along.  Yep, sitting in the light booth and doing my meds, while watching people take their seats. [Note: I turned my therapy machine off when the house lights had to go out.] Its not that hard to fit them in. You just have to be willing to do them sometimes in unexpected places and be willing to have others find out about it. I had two people in the light booth with me, neither knew I had Cystic Fibrosis, but neither were bothered by the nebs. So bottom line
2 comments
Read more