Thursday, July 2, 2015

Big Day: Big Things Happening

July 2nd, What a Day:

First, I must tell everyone that it's my mom's birthday! That's right my amazing mother is celebrating her birthday today. As you may know... I'm very much attached to my mother, probably too much. Not gonna lie. I call or text her at least 5 times a day. Judge me all you want. But she ain't you're stereotypical mom. She never tells me what to do, she never judges, she is more of a best friend than a parent at this point. Granted I still call her for an awesome casserole dish recipe, or advice on something I'm doing for the first time, for the most part, she is just someone I like to chat with and share lots with. Plus, she has been helping me with  wedding & CF walk stuff. Here is a post I wrote about my mom on Mother's Day that explains EXACTLY how amazing she is right here!

SECONDLY, she got a pretty amazing Birthday present. Today is day that Vertex's Orkambi was FDA approval for patient use. What does this mean? What's Orkambi? Well, to read more details, I blogged about it in the past right here. Its a pretty big deal and I'm sooo excited about it.

This is why Clinical Trials & research is sooo important. I have a tab on the right had side on my blog- a "label cloud" & I've tagged all the trials I have done in last couple years there. I love doing trials, because it's super important. Without patients being the guinea pigs the research will never advance. Apparently, with my mutations, having only the psuedo bug, and being my weight, age, and  lung function... I'm pretty much ideal for most the trials. My lung function isn't too good or too bad, it's apparently "just right" lol. 50% whopping percent...

There are some negatives to doing the clinical trials, I have been on placebos before. For example one trial I did (for a psuedo antibody). I couldn't do my Cayston the entire 9 months. That's a long time to be without an important medication, especially if I'm ending up on placebos & not the trial drugs. It could of happened, who knows. BUT, even if my health declines a little, I can get it back. Usually you can't get back lung function, when there has been permanent damage, from prolonged infections & scarring. Otherwise, you fluctuate and can get it back. I know I'll never get above 65% (cuz of damage). But, I trust doc to oversee my doing the trials. Even with some negatives the positives outwiegh them all. Because when you see advances being made, such as Orkambi & Kaylcedo.

I'm not currently doing anymore trials for a little while. I just ended one little over a week ago. I decided to wait until after Andrew's & I 's wedding to do another one.  There is a lot of precision involved in them and I didn't want to worry about it on our mini-moon. We decided to take a mini-moon, since my health has been ehhhh wonky and we want to save more of our money for other items, like a down payment for a home, etc.

However, Doc already has two more trials for me to start when we get back :-)  Big week for trials this week! I'll be updating you all on wedding details & my current health soon. Check back for details!

Sunday, June 28, 2015

Princeton Walk 2015

A Small Town Raising $22,000:

Should I say I'm shocked? No, its not the right word. I'm blessed, humbled, happy, over-the-moon about raising $22,000 yesterday at the CF Great Strides Walk in my hometown. To think it started as an idea I had and it has grown into this amazing event! Last year was our first CF Walk (but we weren't technically a Great Strides Walk for the CF Foundation, we just donated the $13,000 we raised to the CF Foundation. But it was enough to become an official Great Strides this year!

I can't say I'm shocked, because even though the amount is quite high for a town of 7,400 people, I know it's a very giving, supportive, and loving community! 

It was similar to last year with registration from 9:00-9:40, speakers, walk at 10:00am, with a lunch, dessert to follow after. We had Unique Twist making awesome balloon creations, Chariss did face painting, we had Hit Clips Karaoke & DJ service playing tunes, and tons of raffles & silent auctions to keep everyone entertained during registration. Then after our donated Subway lunch we announced the raffle/auction winners!

 I put a message on my personal Facebook page the other day, but I can't think of a better way to say why this walk is so important to me... So to quote myself:

"My family and most friends know how many treatments, pills I do or take. They know I have keep on top of everything or my lung function will drop. but I want to share with everyone why I walk in Great Strides or CF. I'm currently below 50% lung function and under 100 lbs. But I know CFers who are way worse off than me. This research is important to not only prolong our lives, but give us a better quality one. I mean who wants to lug an oxygen tank around everywhere by the time they are 30. I don't yet, but I know others that do. 37 is supposed to be young still, newly married, maybe starting a family, buying houses, etc. But, the reality is 37 years old is the average life expectancy for someone with CF born today. I've watched as almost every single person I grew up with that had CF pass away. I know what it looks like to be struggling in a losing battle. Then after this September (losing my best friend Laura from CF), made me want even more, to help, to make a difference. So Thank you for listening to me ramble about the walks all the time, and attending walks with me, volunteering, donating. You make a difference!!! You really do. Since I've been born, I've seen CF go from a Childhood disease to seeing new meds help us reach ages we never imagined!" 

I seriously, broke down crying on the way home with Andrew. They were happy, tired, overjoyed, and sad tears. I was sad Laura and all those others with CF won't get to see the advances of today's medicine and benefit from it. BUT, I was happy & overjoyed by the amount of people I felt were there for me. Like me personally. This walk is soooo much more than about me & my life with CF. BUT, having over 100 people (family. friends, classmates, co-workers) come to support me in this, shows me how loved I am. And of course, I was beyond tired from running around that day. So it made for one amazing/happy mess of cry-fest on the way home.

Which led to a long talk, us discussing how I'm going to get my weight back up above 100 lbs & my lung function back into the 50s. I really start to feel the difference in my energy & overall health when I go under 55% lung function. So we all know it's going to be a BIG battle. Every day I spend hours of energy into doing meds, taking pills, drinking supplement drinks, going to the doctors, and calling pharmacies & insurances; and I see very little difference, if not none at all sometimes, in my health. 

So days like yesterday help me. They remind me how much I am loved and all the reasons why I need to fight to stay healthy. It gives me a kick in rear to work out more, eat more food, do extra nebs, and really focus hard!!! These CF Walks are not only motivation for me, but great awareness for Cystic Fibrosis. I really believe the event is fun & that is one the main reason why it is growing in participants

I think all the participants loved the walk, I know I had a fantastic time & it was amazing seeing so many family & friends! I'm amazed how much the teams grow each year!

I send out a reminder email to anyone (who wants one) a month or so before the walk inviting them to walk with us! If you want to receive that email next year (no other spam ones, promise) then email me at cysticfibrosiswalk@gmail.com. Include your name, email address, and your team name!

Now let me put it into perspective on how well Princeton, IL ( my lil hometown) did with our walk and take the time to properly thank those who made it happen!  Here are other towns with Great Strides CF Walks too:

Princeton, IL: a town of 7,400 people raised $22,000
Champaign/Urbana IL:  two joined cities of over 121,000 people raised $19,149
Dekalb/Sycamore IL: two joined cities of 60,000 people raised $27,722
Bloomington, IL: city population of 76,000 raised $26,648

I'd say we did amazing! I still can't believe how amazing we did! I'm not going to announce other team totals, but I do have them, so if you want to know ahead of time (before they are finalized with CFF) I can let ya know! I know my Team CF2 raised $7,600 for the Walk. Now, in 2014 my team raised around $8,000. BUT, since last year a couple members have started their own teams growing our walk overall! In fact, I have family on 3 different Teams! So I'm beyond pleased and proud of my team & the others! #TeamCF2 you rock!

I want to give a special shout out to our sponsors & donors (listed below) & thanks to the team leaders: Tom, Robin & Lyndal, (my cousin) Emily, Cathy, Stephanie, Destiny. Also, Janice, Jackie, Peggy, Ada, Kellie for helping plan & organize the event! Also, big Kudos to my sister (Ada). she pretty much ROCKS! She makes registration go so smoothly & keeps everything so organized! Which is why we can give you the amount total at the walk!

Thank you: John, Yohanna, Charissa, Ann, Maggie, Karla, Kathy, Leah, Kym, Annie, Devahn, Kazia, Kenna, Brian, Tammy, Sarah, Chariss for volunteering or donating. AND of course a big thank you to all the people who walked & donated!

THANK YOU!!!

SPONSORS: Blue Way Jay Records, Bruce Jewlers, Central Bank of Illinois, Chapel Hill Golf Course & Event Center, Daniel J. Miller Chiropractic, Dr. Paul Perona, Elvin Krabill D.D.S, Family of Josh P, Gardner Denver, Grant- Johnson Funeral Home, Hit Clips Karaokie & DJ Service, Illinois Valley Eye Care, JoAnne Milani PhD, Marquis Energy, Masonic Lodge of Ottawa, Mchenry Machine Co.,Norberg Memorial Home, Peach Trucking, Prescott Brothers, Peach Trucking, Subway, Timothy J. Puhr D.D.S, P.C, Wyanet Body Shop, Ye Olde Underground


RAFFLE & SILENT AUCTION DONORS:

Tammy R, Brian A & Dan M, Kathy A, Peggy K
Kym P (check out her blog: ), R.P Lumber, Animal Sheltor, Leah K, Blue Jay Way Records, Beck's, Piehls, Skoonerz Bar & Grille, Milk Mustache, Los Ranchitos, Wyanet Locker


If you have a business & would like to sponsor  or would like to donate a raffle item/gift certificate for next year and would like to be adding to our mailing list for next spring, please email Cheriz at cysticfibrosiswalk@gmail.com

Team CF2 (my team at the Princeton Walk)


And make sure to check out our facebook page for all the photos!


Monday, June 22, 2015

300th Post: Our weekends :-)

Busy, But Amazing Weekends:

This past weekend Andrew & I had a friend's wedding in Milwaukee, Wisconsin. I actually really enjoy out-of-state weddings. Why? because Andrew & I make lil weekend trips out of them. See, we have never been on vacation together, Thesse wedding weekends are the closest we have been. And those are usually 1-2 night & 2-3 days. But long vacations are expensive, and most ones we find cheaper we don't have interest in going to those places. PLUS, traveling is BEYOND stressful for me. All the meds I have to pack, planning meds into the day, making sure I don't get sun sick or get dehydrated. Making sure I eat enough and keep my calories up. Andrew is pretty good at noticing when I'm slowly down and need a snack. But still the only way I would do more than 2-3 days away is IF the PLACE was worth it. Like out of the country or something...


We went to the dells (read about that mini-trip here), during Amanda & Jake's Wedding and this weekend we got to see some cool parts of Milwaukee during Jason & Kelly's Wedding. We did this trip with Ryan (my bestie, even if Andrew tries to claim him as one of his besties... :-P)

Picture to right: Andrew eating his brunch at Comet Cafe, yum Bacon wrapped Meatloaf!

The Comet Cafe was a really cool place with a great atmosphere & it was packed! Luckily, we got their early on Saturday  decided on the  Comet Cafe for brunch (because it was on Diners, Drive-ins, and Dives & had amazing reveiws).

We walked around that area, went down by the lake, and then headed back to hotel to get ready for the wedding. Where I proceeded to take an hour nap while they watched an X-men movie (clearly I was exhausted from walking).

Picture right: Andrew & I ready for the wedding!

The wedding ceremony location was beautiful, with the river behind them! We had a few hours to kill between the ceremony & reception, so I changed into Flip Flops and we walked around Milwaukee's "Historic Third Ward." Such an awesome vibe around those shops, bars, and restaurants.

Left: Ryan with his toffee flavored Coffee, Andrew had rolo flavored coffee, but I had a giant pretzel and a coup of soup instead :-) 

We stopped at a lil coffee place to get some coffee, and get me a big snack. then we headed to the reception. The reception was beautiful and fun! I had some asthma attacks trying to dance and other medical problems, which lead to us leaving early and me realizing I need to step up my work out/ rehab game IF I want to be able to dance all night at Andrew & I's wedding. We had a great time though!

We crashed as soon as we got back to hotel and we slept in a little bit (til 8:30am). Sunday I woke up, did my meds, got ready for our last day in Milwaukee, and texted my dad "Happy Fathers Day". Yes, texted, but if you knew my dad and how much he doesn't like gabbing on the phone you'd understand. Besides my dad knows how much I love him, I tell him all the time. I got him a card to give him next weekend while I'm home too. But really, if you haven't read the post I wrote about my father a couple years ago, please do! Read this Father's Day post and you will see why he is the most amazing dad I could ever ask for!
We had reservations for Mader's German Restaurant at 1pm on Sunday, I actually found it googling Milwaukee restaurants. I was super excited, because Andrew & I love German food, Ryan had never had it and Mader's was over 100 years old with an amazing German Buffet Brunch! It was known for not only it's food, but its antiques too!

The Buffet was enormous with over 10 German entrees, American Entrees, fresh fruit, carving station, many desserts, cold salads, and more! I ate 3 plates of entrees which included every German food I could of (amazing brats & potatoes, hams, roast beefs, sauerkraut, spatzle, maultaschen, and smoked trout) I had a cold plate with my favorite cucumber salad, lots of fresh shrimp & fruit too! Plus, I helped Andrew eat his chocolate raspberry dessert. The restaurant was awesome, with antiques everywhere. Seriously, eat here if you go to Milwaukee!


Plus, waiting for our reservation we had a couple hours to kill, so we walked the riverfront for bit and went to a couple local stores, like the cheese mart, where I tried over 15 types of cheese. YUM!

Picture: Our selfie on the riverwalk! 

After Mader's we were full and tired, so decided to head home (we got home around 5pm). It was an amazing weekend! And next weekend will be too! This weekend  (June 27th) is Princeton's 2nd Annual CF Walk (that I founded last year & organize now). It should be tons of fun, with so much more than last year. We have amazing raffle prizes, a dj, face painting, ballon creations, educational CF booths, and subway lunch. Last year we raised $13,300 for the CF Foundation. This year my goal is $20,000 with a personal goal of $1,000 in online donations.

Some of the raffles we have this year include: Fish Tank, Pet beds & Toys, Gift baskets w/goodies, Jacket, Vera Bradley set, doll with little outfits, crocheted afghan, homemade jams, etched picture frames, handmade purse, and more, plus gift certificates to local places. I hope these raffles help us to reach our goal. So make sure to bring some money for raffles, or a checkbook for the silent auctions.

If you want to attend, please sign up. Feel free to join my Team CF2 or consider donating to my personal page to help me reach my goal RIGHT HERE! Thank you and can't wait til next weekend ( plus, my clinical trial ends on Wednesday)!