Cheriz: My life with Cystic Fibrosis

I will be posting about the CF Walk, once we have all the photos, etc! I promise it will be soon. However, I would like to talk to you about our job/insurance situation I will be calling my health insurance tomorrow to go over all of the issues, so I don't write this for sympathy or advice. I just feel I need to share exactly what Andrew & I have to consider on a daily basis and how much CF affects every aspect of our life. You all know (I'm sure) that my husband is at a new job now. It has been bit of a crazy life for the last 2 years. He worked at Culvers in the past & had moved up to the position of General Manager (2 years ago) when we lived near Chicago. He LOVED that job and would of been happy there forever, but since each Culvers are individual franchises, the owners don't have to provide benefits. Andrew's employer didn't offer benefits to spouses. That obviously would not work for us, since (we knew sometime in the near-ish future we would be...

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...

Every New Year's I post a yearly review of everything that took place. It is surprising to see how much has happened and how much of a roller coaster ride life can be. I'm ending this year with not-so-great doctor's visit with my lung function back in the 30s, but I truly believe in 2017 it will all get better. My lung function, health, and life in general. I am doing a lot of outpatient tests right now to see what it is going on in my lungs ( I had some stuff show up on my last CT scan). So in January I have another appointment to get a plan together. Whether it be an admission or home IVs, or something else. One day at a time, but for now let's look back on this year! Here is 2016: January & February Fighting Insurance for Colistin because my lung function was low, which is why I had to cancel my eye surgery. March I was the guest speaker at the Annual CF Meeting & honored to receive an award "2015 Great Strides Partner of the ...

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 brea...

Thank you to my Husband: As of August 16, 2016 Andrew and I have been married for a year! (click here to read our 2 wedding blog posts ) It is hard to believe a year went by already. It was an exciting year, that's for sure! Andrew got a promotion with the company he works for and we moved the week of our wedding for the new opportunity. Even though it added a bit of stress to our wedding week, we didn't mind because we knew it would be worth it! We got to move to the same town my sister lives in and a big bonus factor is my Cystic Fibrosis Center is in Peoria too! After moving to Peoria, I decided to finally become licensed as a Real Estate Broker. The career choice wasn't new, I had always wanted it. I just couldn't be a Real Estate Broker, because I needed health benefits. Both our careers are going really well  and we decided to buy a house this June! So it has been an exciting year thanks to all the milestones we have achieved.  I just wanted to take this tim...

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...

Lots Going on & Beyond Excited: I've been writing about some big topics that discuss how Cystic Fibrosis affects Marriage. Not all the changes are bad. Yes, moving to new locations for my Husband's work means the hassle of switching pharmacies, updating info with all doctor's offices, and even deciding whether or not to switch doctors. I wrote a whole blog post on why choosing & deciding whether or not to stay with our current doctors is so difficult. However, I LOVE where we are living right now & we are closer to my hometown, so I can still be involved as much as I want. It's a good area for Real Estate too (which I will be starting once we are back from our Honeymoon).  I'd say the hardest part for me post-marriage has been switching insurance & switching pharmacies. We have a good insurance plan (we pay $3000 per person for a deductible) because it cover 100% of all specialty drugs post deductible, there is no 20/80% costs or co-pays, etc....

My Break From Chaos: I know my life isn't as chaotic as some people's lives; But lately, it's one thing after another. To fully understand the clinical trial, weight & Gi issues, and the potassium scare make sure to read my last post HERE . But, finally some GOOD NEWS: the re-do test I got drawn at the local hospital for my potassium came back in the normal-ish range. Which means that it WAS a fluke and some of the red blood cells did rupture when they drew it in the office. So yay, good news! The only bad part of it came later when Doc's office called, the clinical trial researchers won't accept the local hospital's sample. So I have to do the test a third time and on Andrew's day off tomorrow we will be spending the day driving 2 hours one way to get one blood test done at doc's office and then driving home.... I'm a lil annoyed.  Seriously, why didn't they figure this out before I spent a whole day calling & registering at the new...

Amazing Opportunities : Andrew's Birthday was May 6th, he finished the semester yesterday (the 7th), so what would be a better way to celebrate everything... than meet Lewis Black!!! Pic right: Okay, we celebrated his birthday on the 6th too! I made him a blue raspberry cake with green colored frosting ( his favorite slushie flavor & color). Then I made him a card & some minion gift bags to put his presents in!   But, still on the 7th the celebration just continued... How did we get the opportunity to see Lewis Black? Well, CFF chapters have competitions   & other ideas for boosting their great strides walks. One of them was to register the most Team members for a Great Strides walk for the Peoria, CFF Chapter. AND my fabulous Team  CF 2  did it!!! We registered 24 people in that time period. Now we have 45 walkers for the Princeton Cystic Fibrosis Walk so far!!!! I'm hoping to register at least 25-50 more in the next month! So really if you ...

Medical Update: If you don't know I've been having a lot more GI problems. I've always had issues with my intestines. Ha, that's an understatement. I've had almost 25% of my intestines removed over the years. It started at birth! (Read about my medical history HERE ). Picture Right: I'm a few weeks old here, you can see the scarring on my stomach from the surgeries I had. But I've really noticed more issues since 2013. By issues I mean : stomach pain, cramping, not wanting to eat all the time ( I know, crazy huh), and the ever so fun diarrhea. I use the word "issues" cause it's easier and let's face it, prettier... I was hospitalized for the bathroom issues in late fall 2013. But we think the IV antibiotics destroyed all the "good" bacteria in my gut, hence the inflamed colon (which is pretty annoyingly painful) & the diarrhea. But the bathroom problems are getting worse.. and I actually sometimes wonder if I could even...

Happy May Day! I love May Day/ For many reasons. The first reason is kinda bittersweet. May Day always reminds me of my Grammer (Grandma). I spent a lot of time with her as a kid. My mom was a Stay-at-home mom. So Mom, Grandma, & Me (& my sister when she came along) would go to shopping a lot. We'd go on walks, get nachos in the WalMart Grille, etc. She was a huge part of my childhood! The reason I remember her on May Day the most is because every single year my sister & I would make these cone shaped baskets out of paper. We loved drawing on them, adding sparkles, and other fun goodies inside. We would sneak up and leave them, ring the bell, and run back to mom's car. We always thought we were sooo clever never getting caught. By the time we got home Grammer would have left a message on our machine " Oh my goodness, someone left me these beautiful baskets, how could I not have caught them. I was ready this year waiting right by the door" Then we usually...