Wednesday, October 12, 2016

Guest Blogging, Fried Chicken, and Halloween!

It's a bit of a rainy Wednesday, so I don't know what is better than catching up on blogging & social media, while drinking hot apple cider.  I have a lot to get done around the house today. Yesterday, I fell asleep around 10am (without trying to) and didn't wake up til 4pm. Whew. Glad I didn't have any appointments. I really needed the sleep though, since starting Orkambi my nights are a little tougher.

Overall, I haven't reacted too bad to Orkambi. Coughing more (which keeps me awake at night), my chest feels tight and I get out of breath quickly. But no fevers or anything. My energy and appetite have been good too. I started Orkambi 10 days ago and I knew there would be an adjustment period. I was excited to go for a walk last night. I walked a mile with Andrew, very leisurely. It took me a while and I needed to stop 3 times to just catch my breath, BUT I have heard of people getting so sick they are stuck in bed while they adjust. So, I will take my breathless walk as a win for now. We just have to wait and see how my lung function, weight, and liver look in November. My doctor is testing my liver in November, instead of waiting the standard 3 months to check, since I have a history of liver issues and Orkambi is tough on the liver. If I have any signs my liver can't ever keep up with it, I will have to stop the med. Orkambi isn't worth a liver transplant. So let's all hope my lung function and weight are up and my liver numbers are in a good range! 

So much has happened in the last 2 weeks. I'm excited to FINALLY tell everyone that I was asked to guestblog on the National Cystic Fibrosis Foundation website. They have a CF blog and CF patients, parents, and others can guest blog about CF topics. They wanted me to share about my husband and I's experience house hunting and how my CF affecting our decisions. So please make sure to jump OVER HERE and read it!  I hope to write more for the CFF site in the future, I will keep you all in the loop if I do :-)

I can't believe Halloween is almost here!!! Andrew and I started dating on October 27, 2012. Andrew and I met in August of 2016 during show choir. Apparently, he liked me and I was oblivious. I wasn't looking for a relationship and just had no clue. He asked me to a show, but I had to work. He asked me to lunch and I asked a friend if she wanted to join. oops. Poor guy couldn't get a brake until our show choir performance that night. He was Dr. Frankenstien & I was a zombie during the monster mash song. Yes, I looked like the picture to the right when Andrew asked me out for the 1st time. True Love from then on... lol. This year we are very excited to have a house and not be living in an apartment for the 1st time together! We get to hand out treats and deck out our yard like a cemetery for Halloween night.  I can't believe how fast this year flew by, it's almost the end of the year. I decided before 2016 ends, I'd host one more fundraiser for the Cystic Fibrosis Foundation (where the money counts toward the CF Princeton Walk). 

Why not do a Rip's Fundraiser?!? Rip's is a local restaurant/tavern in Ladd, IL that is known all over for their outstanding fried chicken dinners! We are selling tickets in advance for the event. Tickets are $8 a piece. Include 1/4 (light or dark) chicken, fries, bread, and crispies (if requested). We need to sell a minimum of 300 tickets for the event. The night of the event is November 21, 2016 and you must bring your ticket to the event. It must be purchased in advance. If we sell our minimum required, we will raise a minimum of $1200 for the CFF. Plus, we have a bake sale and other things! You don't want to miss it! To see all info or find out how to get tickets, please see the event on my Cheriz:My Life with Cystic Fibrosis Facebook Page!

I'm so excited to see how clinic on November 6th goes & then host the fundraiser on the 21st!!! What are your plans for Halloween? Got a great fundraiser idea? Share it with me! Thanks!

Tuesday, October 4, 2016


In my last post I talked about how exciting it was to be finally check marking some boxes off my to-do list! My eyes are still healing really well. I only get an occasional headache if I try to read or stare at a screen to long. I know it will take time, but I struggle with patience.  Shocker. I know.

Well, one thing I have to be REALLY patient about was getting Orkambi! As you know this was something Dr. B was contemplating putting me on back in March. Then I switched CF Centers (Read about why in THIS POST) and my new Doctor thought I should definitely try it. Orkambi is a gene-targeting med that tries to correct the defective mutation (DF508) and just came to market in July of 2015, but it has bit a price tag attached. Orkambi costs a quarter million dollars per year. Which means if I take the drug say til I'm 71 (its an easier number for math reasons) insurance will have spent 10 million dollars alone on this one medication for me. So you can see why it is a bit of a struggle getting it approved. Doc K. (my new doc at the Peoria Clinic) put it through for prior authorization in July of 2016. Insurance called me in late August, saying it was approved, but they didn't have my co-pay/ out of pocket figured out yet. So I waited and waited. Finally I couldn't wait any longer ( haha. no patience). A couple of weeks ago I called and asked how it was coming along. It turns out it was 100% covered, NO out of pocket or co-pays.

I'm very lucky, Andrew's insurance is very good. Granted, we pay a lot per paycheck for it. BUT, after we meet our deductible of $3,000 on me (which is our out of pocket) we are at 100% on everything. Medications, specialty drugs, Doctors, Hospitals, ER visits, etc. We hit our deductible in January with my first medication refill. So we are set! I couldn't believe they didn't even try to argue a case! YAY! They got it set up and shipped it out. I got my Orkambi last week and started it yesterday!

Since my 1st dose yesterday morning, I've only noticed a tighter chest and I need to blow my nose quite a bit, but that could be just allergies. So we will have to wait and see! I'm very happy to be on Orkambi and see what happens! I've been told as long as I can get through the adjusting period (between 2-6 weeks depending on person) that I can see some really good changes in my health! I'm still learning about what foods to eat with them, but I haven't had any big problems so far! To learn more about how I'm doing or more about Orkambi, go to my CF FB page and watch my daily Vlog updates!

Thank you everyone who volunteered to help me during Orkambi, I will for sure let you know if I need anything! Much Love! Also, I will post about the CF Peoria Walk once our team & walk totals are announced!  But Thank you to everyone who came, donated, and helped with the Big event!

Thursday, September 22, 2016

Checking Off My List

Good News:

A Sigh of Relief. Finally. I had my eye surgery last week and I had my post- operation follow up appointment yesterday. All is going perfect with my eyes! I've been needing this surgery done for the last year, but had to cancel twice due to my getting sick right before surgery.

I had Strabismus surgery. Basically my eyes (mostly the right eye) wonder and can't follow along together. My eyes didn't work as a pair and my left eye took over my sight. So I had depth perception problems, bad night vision, and stopped reading books about a year ago. I was so happy that Wednesday I got to follow through with the surgery!

I have one more post operation surgery appointment next month, but Doc said they look perfect! Well, technically they are still bloody (in the surgery they snip the white part/muscles and stitch them tighter), but I love my bloody eyes more than my old ones and can't wait to read the stack of books waiting for me!!!!

My checklist is finally getting accomplished:
✔ eyes surgery
✔ medical alert bracelet

Yep, that's right!!!! I ordered a medical alert bracelet. Remember about a month ago I asked for opinions? Well, a friend of mine is a KEEP collective designer & through the month of September she is donating a portion of proceeds to the Peoria CF Walk! So I decided it was the perfect opportunity to order an alert bracelet & a CURE CF Bracelet.

I absolutely love them! The bands are reversible and I can move the plates & charms on either band, so it makes a total of 8 looks out of just these 2 bands I bought! If you would like to order anything in the next week through my KEEP online Social party (and have a portion of proceed benefit the CF Foundation), go this KEEP site here!

Why a medical alert bracelet? It was important for my family & friends to feel I was safe in case of an emergency (and myself). If I wasn't deathly allergic to Morphine, I wouldn't be so worried. The last time I was given morphine I went into anaphylactic shock and almost died. I think alerting people I have CF and not to give me morphine were my two priorities. I think being able to put the engraved plate on different bands will make it work with any outfit I wear.  I'm not a huge bracelet person, but these bands adjusted to any size, so they are comfortable.

✔ CF Peoria Walk Ready

October 1st is the Peoria Walk! I'm not sure how big my team will be this year! Last year we had quite a few more people join us. I help plan the Peoria walk, so it is VERY important to me! I'm very excited about the Live Music, Photo booth, and other fun activities at the Walk! But, the best reasons to attend would be:

 1. Andrew, my husband is the Guest Speaker.
 2. It raises money for the CF Foundation, bringing us closer to CURE every single day!

Please consider joining my team that day or donate to our link:

Hoping to start Orkambi this month, insurance is still dragging feet. Also, big CF Fundraiser at Rips coming up!!! Follow my CF Facebook page or twitter for more updates!