Cheriz: My life with Cystic Fibrosis

I have a lot of feelings going on, for many, many, many reasons. It all centers around my health and family. On August 4th we received 3 Foster kiddos, let's call them "Cajun, Barbie, and Shoes" (that is what I refer to them by on FB). It was a very big Roller Coaster ride for the last 3 months. If that isn't enough worry and emotions to have going on, we can throw my hospital stay and lower lung function into the mix. I knew my lower lung function was not a result of the kids (even though many believe it was)... Yes, I was run down from pulling all the "all nighters" with the kiddos- they are adjusting to a new home and its hard on them. BUT, I have been struggling with lung function for the last year now. I was 60% August 2016. I started Orkambi in Sept and 5 weeks later I was in the 20s.. I was admitted (my family did thanksgiving with me at the hospital last year). When I went home I was between 38-45 for months that followed. Not even getting to 50 was ...

It finally happened!!! The Stork came to our house!! We had 3 kids placed with us (on August 4th) Friday afternoon. Luckily, Andrew was able to take off Friday-Monday (Aug 4th-7th) to be home as we all adjust the first few days. He then worked 8th-12th, but we needed him back home more until the kiddos started school. So took a full second week off, because it was really rough ! Big thanks to Culvers & Phil for allowing us time we needed. I love having kids in the house, but it's a lot of appointments for these kiddos at first. . For privacy reasons, I will never use their names or post pictures of them.  I have made fake names for these posts. When they called I was a little nervous to take 3 kids at once, especially since I have Cystic Fibrosis. We had agreed on only 2 originally. But, the lady explained the 3 of them really needed somewhere. Most foster parent's don't take sibling groups and it is really rare to find one that will take three, so our hearts wanted to ...

Hey everyone! So I am boldly going where I have not gone before…into the realm of blogging. Now to start off I will say that I am not a writer, so over the course of the next, well rest of my life, bear with me as I share my perspective on our life. To start off I am going to let you all know a little bit about myself, as if my lovely wife hasn't shared that information in the past! I am married to the lovely Cheriz, I am a graduate from the culinary arts program from Joliet Junior College, I love to cook, bake, be outdoors, movies, baseball (Go White Sox!), and I love my job! Recently I transitioned from working at Hy-Vee as the Assistant Meat Manager, a job which I really did enjoy but did not allow me to spend the kind of time I wanted with Cheriz. Also looking into the future and the discussion of fostering kids, it was not the right fit for me and our family. The transition lead me to becoming the General Manager of Culver's, which if you do not know, is a casual dinning r...

It is June already.... Wow, has time been flying by! May was Cystic Fibrosis Month and I spent a lot of the month preparing for the Princeton Cystic Fibrosis Walk (June 10th). If you want to join us or donate, just click here !  I also attended the Bloomington Great Strides Walk in May! Andrew (my husband) was the guest speaker  (watch video at link ) at the walk. I'm so proud of him, he has really stepped up in the last year and has been getting a lot more involved with the CF Foundation! In the last month I have gotten even more involved as well. I decided to join the CF Foundation Champions committee. We discuss ways to improve daily care and improvements that will help the CF population today. I was also invited to apply for a position on the 2017-2019 (2 year term)  CF Foundation's National CF Adult Advisory Council . The council is made up of 12 individuals that are selected across the United States that are leaders in the CF community. The AAC is responsi...

I have blogged a little in the past about Andrew & I's challenges with starting a family. Our first step was to buy a home. Which we did in June! If you haven't read the Guestblog I wrote for the CF Foundation, it will give you the background to our decision making & how we plan to become a family. Read it right here at the CF Website!  It will help you understand all our reasoning.. I started by talking to the social worker at my CF Clinic. She directed me to compass. To be honest there wasn't much else to do. So we eagerly called compass and found out there are a few grants that help with adoption costs, but not much support for surrogacy and foster care. The  Compass (CF Foundation Help Site) did give us the name of place that does genetic testing that they said was fairly inexpensive. When we called the place they said they can't tell us the cost or about the tests, until we had a script from a doctor.  I called a few GPs to get Andrew an appointment....

I don't really like to make New Year resolutions. My resolutions were always something really important like being 100% compliant with nebulizers. That's a lot of pressure when you do 10 nebulizers, 3 airway clearances and take over 50+ pills a day. If I go out of town and forget my pulmozyme, It ruins my prefect streak. While they are simple mistakes, once I mess up, I have lost that competitive streak I had and it's hard to stay on track. So I decided this year just to examine where I am at now and take it a day at a time. My doctor explained my lung function in a great way that emphasizes it's importance. I have at the most 65% lung function (due to permanent scarring & damage). Which, it's sad to realize at my healthiest, I'm still missing 35% (over 1/2 of a lung). But the lowest I can go is really 20% and I start preparing for a transplant at 30%, so 30% is somewhere I don't want to be EVER! So if I have between 65-25% range from best to well (w...

Family Planning Part 2: I already talked quite a lot about Andrew and I's reasoning for starting a family now and choosing Foster Care in this post here ! But, we have a few steps we need to take before we can actually become Foster Parents.  1. Move (hopefully buy a house) 2. Take the classes, etc. 3. Prepare our home for Children Realistically we have our lease at our current apartment through August. So at the earliest these steps will not be finished until at LEAST September. If we find a house between now and then, get classes taken, etc then we will right on track. We aren't too concerned about the classes or paperwork yet, we want to get the new place and move first. Why do we need to move before we have children? Well, a few reasons. First being we want to foster more than one children, preferably foster-to-adopt siblings. I do know we need 1 bedroom per child and currently we have a 2 bedroom apartment. Secondly, this apartment with all the stai...

Those Tough Topics : Andrew and I have always been very open and honest about what we want out of life. Whether it is a certain career, lifestyle, location of home, family, etc. We both pretty much want the same future. Live close (within a couple hours) to our families, have careers we love and do well at, and most importantly have a family. A Simple Life. Well, you would think so. I mean we work during the day, then enjoy making dinner & eating together..  On our days off, we do our errands or doctor's appointments, but also take walks at the park, and enjoy attractions near my doctors. We have careers we love and still spend lots of  time together. We lead a pretty nice life. I may complain about my Cystic Fibrosis (lately about or our $6,000 deductible). BUT, there are plenty of CFers that don't even have 100% coverage post deductible. I'm thankful we do! Plus, we can prepare for the deductible (which I pay off in January of every year), then no more surpris...