Wednesday, March 25, 2015

LOTS, LOTS, LOTS to Tell!

Doing What I Can:

People can tell me " Wow, how do you keep up with all that" (referring to all my meds). Sometimes people tell me "That's so awesome that you are doing all that"....

Well, I guess, but not really. I just do what the doctors tell me, I know its the best chance I have to living a longer fuller and better quality of life. Plus I have lot of help from Andrew, family, and friends! Right now the main thing I'm working on is: 1. Keeping my lungs at 56% (since my last appointment) AND 2. following the dietary restrictions the GI specialist gave me (read about that appt here) & I'm keeping my Food Journal for him to look at. Here's how that is going:

Okay...  For the last 7 days I've had no meat in my diet. I really miss my meat and to be honest it didn't help a lot. This week starting today I'm no dairy for 7 days. Then I'm no meat and dairy... Then no gluten for a week. I go back to the specialist in 5 weeks. I'm supposed to play with my diet to see if certain food make the stomach pain and bathroom issues better or worse.  Also, today I got my Celiacs blood test done!

Picture to right: Haha, after the lovely blood test I had to run out to the DMV to get my licensed renewed. Which was actually a lot faster than I thought and my picture on my license isn't awful. SCORE!

My following Doctors orders and keeping compliant with my meds can make a difference in my health. But, I also like to make a difference in helping further research to help other people's lives too!

So another way I try to make a difference is Clinical Trials. I'm beginning my next one (Inhaled Mannitol) on April 8th. I got set back, since I got so sick Nov-Feb (losing 15% lung function). I've did 3 clinical trials as a child and this Mannitol trial will be my third clinical trial in the last 2 years too. To read about the past clinical trials and why I participate click here.

Another big way I can make a difference in the research is to help funding for it. I started a Great Strides Team in 2011 and it has grown over the years. It actually got to the point where I thought a Great Strides Walk should take place in my hometown of Princeton, IL. And in 2014 we decided to do just that. With over 120 people and 35 sponsors we raised over $13,300 in 2014 at the Princeton Walk. So the CF Foundation added our walk to the list of national walk sites for Great Strides in 2015!

So this year it's going to be even bigger and better! Read all the details HERE!

We have been doing smaller fundraisers to supplement the walk.


For example: My 30th birthday party is a bowling fundraiser. If 30 people come then we will raise at least $120 for our TEAM CF2 for the walk! I knew I wanted to celebrate turning 30 years old. Honestly when I was a teenager there were times when I didn't think I'd live to be 30 yrs old! So I had to  celebrate and what better way to celebrate then to have a fundraiser for my Team & CF! If you can't attend my party and still want to donate: click here! If want to attend, there is an event for it on my www.facebook.com/CherizCFPage - just rsvp :-)

I never thought about smaller events to supplement the CF Walk until this year! The walk will have at least 3-4 teams walking at the Princeton Walk! Another team has jump started their fundraising too! They have raised around $1,700 already and hosted their own supplemental event tonight! They were "guest servers" at a local restaurant and all the tips went to their Team "Breathe Easy" led by Tom!

I had a great time and it was great to see sooo many people at the event! Tom did an amazing job!  Delicious food and donating towards our walk- what could be better?

Obviously I had to bring my zenpep enzymes (which I take whenever I eat, they digest my food) and of course I wore a mask ( except when eating - which the other CFers were in another room). I knew there would be a couple CFers at the event and with it being an indoor event, I always wear a mask. I wanna be protected from the superbugs, but I still wanted to go and support Tom's Team! Win/Win! 

IN THE NEWS:
AND.... I sent a press release to the BCR (Princeton Local Paper) awhile back and Goldie Curry from the BCR wrote a great article about my life with Cystic Fibrosis and our Walk!!! Make sure to check it out here!!! It seriously is AMAZING, Thanks Goldie!!!!

The NewsTribune (Another big local paper) contacted me to write a story about me & the walk as well! So that should be coming out in a few weeks! Looking forward to reading it, Thanks to Jennifer!

Want to join the Princeton Walk? Register here: http://peoria.cff.org/Princeton

The Princeton Walk takes a lot of support from the local community, family, and friends. But, I also have friends out of state that are stepping up to take my Great Strides Team (CF2) to a national level.  Our Team (Team CF2) is walking in 4 Illinois Walks, 1 in Albuquerque, New Mexico, Nashville, Tennessee, and then hopefully even Portland, Maine! If you live near one of the these sites and want to join my team, just contact me. AND if you want to be the leader of our team at a new site in a new location, I can help you do that too!

We walk and fundraise to help provide longer and better futures for all with CF!!!

Example:  tonight I just found out my dear friend Jen(who I called "Tubes" as a child) is starting to reject her lungs. She has had two double lung transplants, so I hope her body stops fighting & rejecting the lungs and her new meds she starts tomorrow will help her keep her new puffy, pink lungs!

 It's so hard seeing friends fight soooo hard!  Laura (age 33, my best friend) being denied lungs and losing her battle to CF, Alyssa (age 26) and Cloey (age 12) both rejected their new lungs and passed away recently too. All three of these beautiful, young, smart ladies lost their lives way too early to CF.

I hope Jen doesn't have to fight and struggle. I hope she responds really well to the meds! 
 Please keep Jen (tubes) in your thoughts & prayers

  Me & Tubes in the Peds Hallway at Hospital (Art Gallery)
-yes together, it was pre-discovery of the superbugs. 
I looked up to Tubes growing up and she is just as inspiring today!
Keeping Fighting Jen and I hope you respond well to the meds! 
Love, Cheriz

Saturday, March 21, 2015

A Bride with CF: Issues Part 3

Planning a Wedding:

I discussed a few other issues with wedding planning & getting married that pertained to Cystic Fibrosis. A MAJOR one being insurance coverage. I still can't wrap my head around the fact some people can't get married solely because of medical coverage. I wrote about that topic & biggest concerns right here.

Other issues are much smaller. Things like "can I fit my therapies & vest treatments in the day of the wedding" or "we need to plan to keep my enzymes at the head table, so I don't forget them" and then thinking about packing & traveling for the honeymoon with CF is a whole other can of worms.

We are going on a small mini-moon. Andrew can't get off too much time from work, traveling is hard on me, and after we pay for our wedding we would rather save for a home, future kids, or other bigger things in our life.

So there are many little details to think about with Cystic Fibrosis. This weekend we are doing a lot of the wedding finalization details. For example: We finalized the cake & did the tasting. We are going to get one of the flower girls fitted and her dress ordered, we paid the 2nd deposit on the venue, and we are checking in at Tuxedo shop. My bridesmaids have ordered their dresses (one even has received it already), we got our invitations ( I just have to finish them), and so far we have kept everything under budget or in budget! YAY!

I'm doing a lot of the wedding DIY (myself) and I'm really it helps to keep us coming in under budget!

Honestly, The guest list is the hardest part. I have 120 family members, and I have 40 kids under the age of 13 in my family. Add in Andrew's 35 family members and we are at 155. Plus 16 person bridal party, so 171. Our venue & wedding package allows 175 people. So it's tough. We've had to cut a lot of people (friends wise) we'd like to have there, and not many people are getting plus ones. But my family is just sooo large on both sides its nearly impossible.

Otherwise, I'm loving planning the wedding, I think it's been pretty straight forward. Andrew & I just discussed it, knew what we wanted, and starting planning it out. So far we haven't changed our minds or hesitated on anything. For example: I picked the style flower dresses, Andrew picked the color (which became our secondary color). We picked the venue, invitations, cake, food, together in a matter of minutes.

My parents are super excited! Mom's helping me find the decorations I want and dad's even been willing to do wedding shopping with us! haha!

We are trying to keep everything local and support smaller businesses. For example: our flowers, caterer, photographer, tuxedos, favors all supporting local artists or mom & pop type businesses. I love it!

So really it's all come together really well. I just have to figure out a detailed schedule of the Wedding Day and make sure all of my breathing treatments & vests fit into the day.  I need to figure out where I'll be staying before the wedding, since I live 1.5 hours away from the venue/ my hometown, I'll want to stay in Princeton a few days before the wedding to make sure it all runs smoothly. So I'll need to pack for all that, and make sure we don't forget any of my meds after the wedding when Andrew & I head out! Wouldn't that be horrible. We leave town without my therapy vest and head out for our mini-moon! I plan on making someone in charge of making sure everything is in my car & packed. Planning a wedding is no different then planning an event (like the CF Walk). Decide what you want, make the calls, budget, finalize, delegate, check up, done!

Oh AND As far as people saying "Oh you don't get to eat at your wedding"  I need those calories. considering most brides don't eat big breakfasts or lunches before the wedding. I will be eating my entire
plate before I mingle with guests. Good thing I eat fast!

Speaking of eating... side note: I think I'm gaining weight. I can tell by the way my clothes fit & I feel. So that's really good! My next appointment for CF is April 8th, so hopefully it goes well and I keep up with the good news from Doc! I'm getting put into a new clinical trial! Picture right: from a past clinical trial! 

Make sure you Like my CF awareness facebook page if you haven't. I announce the winner of the freebie on Monday! So hurry and like the page to be entered for a chance to win. :-)






Monday, March 16, 2015

New GI Doc (Whew)

Back to GI Office:

As you know I went to the GI doctor's little over a week ago and had a horrible experience. It was just the worst doctor I have EVER had and considering my MANY medical problems that's saying something. If you didn't read about why I went to the GI or how that office visit went (check it out right HERE).

Mom went with me again, we had lunch and got to spend the day visiting. I always like to take someone with me, so I super happy she could come with me!

Luckily, this doctor was AMAZING. Which Doc B said he would be. Let's call this new, nice, smart doctor (Doc K). I explained all the pain and bathroom issues, etc. Here is what he suggested for our plan of action.

First, rule out food allergies & intolerance issues, and get a blood test for Celliacs (just to cover our bases). If diet and food changes don't help, then time for Upper & lower endoscopy with biopsy of tissue.

So here is the game plan: Get the blood test for Celliacs and keep a food/bathroom journal (from tomorrow- my next appointment on May 4th). I'll to cut out fat & all meat (since the body has issues breaking down the fat in the meat), especially since my body has issues breaking down food to begin with (hence why I take zenpep enzymes with my meals & snacks). He thinks my body may just be struggling extra hard to break down food, so we gotta rule that out first.

I'm to stick to a Low-Fat Vegetarian diet for the next week. If it helps at all, continue that and cut out diary the following week. If taking the fat out doesn't help at all, then I can eat the meat again, and just cut out diary. If diary looks to be the culprit, then cut out gluten. If its not diary, go back to eating diary 3rd week and cut out just gluten,etc... Continue journaling and then on May 4th Doc will go over it with me and see if food allergies/intolerance is the issue. This is to figure out which food is the problem or which combo fits best. ( I already eat low dairy, and low grease, and no caffeine diet - as my own choice). But this will be more extreme to figure it out exactly.

If the food & journal don't help... then the upper and lower endoscopy procedures. I've had a colonoscopy where I was put under anesthesia, but never have been awake for an endoscopy before.. should be interesting.

LEFT: Here are some LOVELY pictures of the GI track that they would examine during the procedure. Haha, Mom was being your Vanna White.

I'm not sure what I want the results to be, while a food allergy would be better than Crohns, etc. I think I'm gonna hope for nothing to be wrong or a gluten allergy or maybe dairy (although I love my fancy cheeses).... I'm a meat and veggies kinda girl. I don't eat bread or pasta much. So I'm really hoping I don't have to give up my meat forever. I think I will cry. I'm a carnivore!!!!!

It's kinda funny actually. I'm a HUGE carnivore (eat meat at least twice a day and big portions). My sister is a vegetarian, and now I'm gonna be asking her for advice on food. No meat, this is the girl who is marrying a Butcher and whose father & uncles get whole cows & pigs to butcher, & I currently have 20 lbs of pork, a pork roast, a whole turkey, ground beef, steaks, and chicken in her freezer....REALLY AHHHHHH!

I'm gonna need everyone's help on ideas of food to eat that is low-fat vegetarian. Please send me recipes, ideas, anything. I know Andrew will have some ideas (considering he went to culinary school & knows a lot more than me), but I'd like more ideas too.

I think it is smart to start with food though, why do a procedure when it could be lactose intolerance. Ya know? So I was super happy with my Doctor and he thought it was cool Andrew was a butcher ( he even recommended a book for me to buy him that he would enjoy. haha).

I have faith between Doc B and Doc K they will resolve the issues so I don't get those bad cramps and bathroom issues. Just gotta be patient while I try different diets.

Other News: Super excited about things coming together for the Princeton Walk, keep your eye out in the BCR for our story! Then March 28th is the fundraising committee meeting. I'm still looking for a DJ, volunteers, sandwich or box lunches from a local restaurant or store. And of course please come and join us, make sure you register! http://peoria.cff.org/Princeton or consider a donation :-)


And don't forget March 23rd I announce the WINNER of the "SUPERHERO BUNNY" - Make sure you have liked the facebook page: Cheriz: My Life with Cystic Fibrosis  to be entered for a chance to win! This page has my blog posts, updates on health, fun CF facts, research news, CF Walk news, and more! :-)

Also, I'm excited for this weekend, we are doing are cake tasting and taking one of the flower girls to get her dress! Plus, I'm going to see my cousin perform in the show : High School Musical. So proud of her, I love doing theatre and I'm so glad she does too. It's going to be an amazing weekend filled with so much fun & some wedding stuff. Hopefully, I don't have trouble eating NO MEAT!!!!!

I can do this. I can do this. I'd rather put a tube down my nose.. I will miss you beloved ham steaks, ribs, chicken/veg skewers, raisin apple stuffed pork chops, and lemon pepper chicken breasts. Yes, Andrew cooks like this :-)

Please send me recipes or ideas to the Facebook page, thank you soooo much! Better go find a journal, cuz I'm gonna be the best patient ever! Wish me luck. I'll keep ya'll posted! Much Love!