Cheriz: My life with Cystic Fibrosis

 Hey everyone! Sorry it’s been a while. Covid struggles have been all around and we have been focusing our on our kiddo and current life situations (jobs, home, everything really). We have been posting regularly on the Facebook page (www.facebook.com/CherizCFPage). We will keep you updated on there for now,  because we are doing some big changes to our current blog! Stay tuned!  In meantime, message our FB page if you need anything. Keep safe and stay happy.  We will be back. Promise! 

I haven't been on my blog much.... I think that is because most of my blogging is currently been done on Health Union's Cystic-Fibrosis.com (here is link to all my posts on their site: https://cystic-fibrosis.com/members/cherizkunkel/ ). I decided last fall to step away from real estate after 3 years in the business. It was tough to say good-bye, especially since I had tripled my volume and business in the last year. However, I didn't have time to add any new clients; I kept saying, maybe next week, next month I can fit more work into my schedule. The truth is fostering takes a lot of time. We have between 5-8 monthly visits at the agency, 1 court ate a month, 2 home visits from the caseworker a month, plus e have 2-3 doctors/specialist appointments for our current kiddo. We have lots of paperwork we fill out, gas mile logs, receipts to add, and more! Our kiddo also participates in gymnastics and dance two nights a week. We go to a fosterparent support group with our kid ...

I'm a hugging type person. In fact, I have a couple friends that aren't big on hugs or any kind of public displays of affection. However, they usually bring the bubble barrier (as I call it) down to hug me good bye. I'm also super extroverted and LOVE to hang out with friends.... Therefore, not being able to see my friends (with CF) in person drive me nuts. A lot of people (in society) don't realize that people with CF cannot be around each other. This is due to the bacteria we colonize in our lungs. It doesn't affect non-CF individuals. But, as we come in close proximity with other people with CF those bugs spread and continue to damage our lungs faster. We fight off the bacteria with antibiotics, but when I was younger we didn't have many options for antibiotics (especially nebulized). This meant we could not eradicate the bacteria and were stuck with it in our lungs for the rest of our life. The more bacteria we culture, the faster our lungs are damaged, t...

My husband, Andrew, is currently at Wartburg Theological Seminary and is starting his first week of his second year there. Every year he lives on campus for one week. He enjoys starting each semester on campus where he can build friendships with other students and professors. It's the only time he is on campus. Usually he does long-distance learning, online, from home. It was the only way we could manage him doing a four year Master degree program while working. This week is the hardest for us. However, we have something on Thursday and Friday this week, so Andrew will only be gone 3 days instead of the typical full five. So that will make this week a bit easier than the other semesters. It's hard for Andrew to be away, although I know he is having a blast. We send random pictures back and forth like a book he may be reading or a game I may be playing with our kiddo. It is hard for the kid(s) to not see Andrew every day. We are foster parents and stability is a BIG issue for ...

Since my last Cystic Fibrosis clinic, which you may have read about on my Facebook page , I have been working on a couple goals... both medical and personal. And boy do I love this summer weather! Summer weather combines one medical and one personal goal!! EXERCISE + MORE FAMILY TIME! I'm not one to enjoy extreme heat (90+), but have really LOVED the nice days outside with the family this summer! Sun (+sunblock LOL), freezie pops, flip flops, YES PLEASE! We have even spent some time at the lake this summer! Our kiddo(s) LOVE(S) the water and so does Andrew! I don't enjoy being IN the water as much as I like being ON the water. We have spent a dozen days this summer at our two favorite park/splashpads as well! Even days spent at home are usually in the kiddie pool. We are enjoying this weather and getting some exercise too! WALK! I try to talk advantage and do some walking when its nice out and I feel good. My Physical Therapist at clinic said it needs to be 15 mins of full acti...

I turned 34 in April this year! I love celebrating my birthday each year and seeing more wrinkles and gray hair appear. I LOVE that I am building this beautiful life with my family. I just wish my body could keep up... Being born with cystic fibrosis meant some challenges throughout my life. I never knew when CF would throw me a curve ball. I missed a lot of holidays in the hospital growing up and sometimes my body tells me to stop. The last few months have been more rough for my CF-related Arthritis. And today isn't any different, despite it being Father's Day! Dad & Andrew I had wonderful plans to go home to see my Dad today, then come back home in time to make some dinner for my family when Andrew gets off work around 5 or 6pm tonight. I had a lot of great plans to celebrate my husband and Dad for Father's Day- They deserve it. But, I woke up with frozen/stiff joints and spots all over. I can barely move, let alone walk or drive today. So all those plans went out the...

I wasn't sure if I wanted to discuss this or should write this post. I had to make a really tough decision this week. I have been struggling with it for months. I finally decided to bite the bullet and do what I needed to... I decided to share because there are probably many others in the same or similar situation. Well, here it is: I took a giant step back in my career.<insert gasp> That's right. I, Cheriz Kunkel, houses fanatic, architecture loving, Realtor, has taken a step away from her Real Estate Career. Let that sink in. NOTE: If you are looking to buy or sell- STILL CONTACT ME. I still make commission on referrals!!!! Plus, I worked with some AMAZING realtors that are friends. So please still reach out!!! Realtor of Year: 2017 I have been a Realtor for 5 years now and I have LOVED being in this industry. Helping people buy & sell, nothing gives me a greater joy than having a 1st time home owner excited to purchase their own HOME! I had always wanted to do R...

Yes, I have Cystic Fibrosis. Yes, It's mostly known for the damage done to our lungs. But, it's not JUST a LUNG DISEASE. To be honest, when I was younger I had more serious GI (stomach) issues than serious lung issues. I've had many, many surgeries where part of my intestines were removed (I only have 60-70% of my intestines left). I have/had liver struggles, bone/joint issues, reproductive issues, and more. Also, I have mild cerebral palsy ( diagnosed at age 3). For my CP, I did lots of physical therapy, wore a leg brace for 10+ years, and see an eye specialist. I had surgery on both my eyes to cut and tightened my eye muscles a couple years ago. So, yes... while overall I struggle the most with my lungs, it changes day- to-day. Some days I do my meds and have no issues. Some days I have stomach issues, some days my joints hurt, sometimes my allergies are causing me to cough a lot. It just depends. One issue I have never "officially" had diagnosed is my Arthri...

Born 12 weeks early and diagnosed with cystic fibrosis shortly People didn't think I'd live past 5 and tomorrow I turn 34 years old. BOOM BABY! I wear my age, gray hair, and wrinkles proudly (yes, even the wrinkles). Hats off to all the medication for keeping me alive. And OF COURSE... my parents, doctors, family, and friends. Research and fundraising has really helped some AMAZING, life prolonging drugs come to market. I have a large support system that helps and volunteers. I'm so thankful!! Heaven knows I needed that support system when I became a foster mom. Especially since I went from zero kids to three specialized (needs) kids. All three of whom I LOVE completely and will do anything for in the future. But, I needed help when I was sick, run down, and tired. As I said in a previous post last mont, " It's a challenge to be foster parents, it's not a challenge to love them" (Blog post: Thinking of Fostering ). I know most parents are guilty of s...

Finding ME TIME can be hard, even feel selfish. But, I have learned a lot. It's a bit of a story, let me start back at February 5th... February 5th, it was a cold, dark, stormy night. OOPS! Nevermind. This isn't a murder mystery. Feb 5th: I had Cystic Fibrosis Clinic, my first appointment of the year. Which means mental health screening. Like my usual- I score zero signs of depression and very high on anxiety. This is an accurate description, I have always been fast paced, over thinking, high level control needed, and high anxiety. My anxiety comes from feeling rushed, having too much to do and feeling I'm not accomplishing enough. This is largely thanks to time my medication and CF takes up every single day. I have trouble saying "No" and take on lots of projects at the same time. Right now, I have a career, I'm a fosterparent, have many medical treatments a day, volunteer on 6+ boards and committees for the CFF National Office, and I'm currently organi...

It's challenging to foster, it's not a challenge to love the kids Andrew and I began fostering in August of 2017. We have had two cases and 4 kiddos live with us during the last 1.5 years. Jumping into fostering 3 kids at once, was a lot. You become an instant parent. READY or NOT! First Store Trip! Prepping? It's hard to know what you will need. An expecting mother has nine months to plan. She knows the age (and sometimes gender) of her child. Now as a Foster Parent you can set limits. For example: you can state you want only 1 kid at a time, over age 10 or under age 5. It depends what works for your life. Then plan the best you can for those specifics. We decided no more than 2-3 kids, but our range of ages is 2-12 years old (for now). So we started out by setting up a crib and bunk bed (that comes apart). We painted the rooms neutral, added fun curtains. We bought duffel bags, some kid friendly games, some night lights, and tolietries. We waited until we knew who was co...

Andrew and I moved in October of 2018. We wanted slightly more space and being closer to family helps when I'm sick (I have Cystic Fibrosis). We are now super close to my sister and 30-45 minutes closer to the rest of our family. Which really helps during times (like now) when I'm on Ivs and extra meds. But, did you know I'm a Realtor (with Keller Williams) and house-enthusiast?? I LOVE homes!! I'm not just saying that. I have since I was a kid. I used to go through open houses (begging and dragging my mom with me). Since age of 8 years old I would sit and design floor plans in my free time. I have a big binder full of them. I LOVE older homes that need some love to come back to life! Our first home was a 1930s bungalow. It was beautiful! I loved that house, but we know who bought it and know they love it too :-) We needed to move to be closer to work, family, my doc, and everything. It makes life a lot simpler for us. And the area we decided to move to doesn't have...

And I'm not talking about the new hit show "Tidying up with Marie Kondo," although I DO love to purge items and be minimalist as possible. I'm talking about juggling life. Having a career, being a foster mom, with a chronic illness like cystic fibrosis can make it feel like I'm juggling 10 items at a time. I think I'm finally getting an idea of what I need to do! I sleep 9:00 pm-6:30 am (yes, full 9.5 hours) and I need them. I do nebulizer treatments, pills, and clean medical equipment for 4 hours a day. Between getting the kiddo(s) off/on bus at 8am and noon, making meals, cleaning, errands. It doesn't leave a lot of time for: career, family, volunteering, and other aspects like appointments (both medical and fostering). I'm not complaining. I'm SUPER lucky to have a family and career. Plus, I'm fairly healthy and stable despite my cystic fibrosis. I have been doing awesome at managing all my meds. SUPER THANKFUL for that! Especially consi...

This was the first FULL year we had kiddos in our home. We became fosterparents in 2017. We loved sharing memories and moments with all the kiddos we had in our home this year! Celebrating birthdays, holidays, and other big events! Last hospital Stay April 2018 2018 started a little rocky health wise. I was admitted multiple times between Jan-April. However, I started a new medication this year that was a bit of a game changer so far for me. Since starting symdeko I haven't been on IVs or been in the hospital (8 months as of this week!). That's a record since 2011! I'm so happy I am finally stable, considering I was running out of antibiotic options that would work. I went from thinking I was running out of meds and nearing lung transplant list time, to having some of the healthiest and happiest months of my life. Andrew's Sermon at our home church Andrew started Seminary school at Wartburg for his Masters in Divinity, we have been blessed by our church & congregati...

My husband and I have been foster parents for just over a year. On August 4th 2017 we took in our first set of kiddos. If you have reading my blog you will know I refer to them by Cajun,Barbie, Shoes. All three are amazing kids! It was a whirlwind of lots of learning, and firsts for them. But the learning and proud moments made up for the pure chaos.  Being a part of all that learning, creates a bond. A strong bond.  No matter how tough is was on us, those kiddos had a million times worse. Saying goodbye to those two was hard when they moved out. I cried for days, maybe weeks. Sometimes I still do randomly. When I see a Peterbuilt Semi Truck or anything Unicorn, I think of them. I have my memories and I knew when I said goodbye is wasn't forever (at least not yet). Since we still have Shoes with us, we get to see Cajun and Barbie at all his sibling visits for a few mins. I still miss them, but I get to continue to watch them grow and learn from a far at least. We have had of respit...

Wow, I can't believe it's been a year since we moved our blog to www.MoreThanDNA.org! A lot has happened in that year. My husband and I became Foster Parents to some amazing kiddos and still have one of those kiddos living with us. We have loved having "Shoes" with us and can't believe how much he has grown and learned in the year!I'm so proud of him! We have court next week, so prayers that it goes okay (and doesn't get continued again- that just drags it out longer for the kids). He is now 39 months old and starting Pre-K this month! Other big changes include: Some renovation to our home (complete Bath rehab & updated plumbing throughout), I started a new gene-targeting medication (symdeko) that is helping to keep me stable these last 3 months, and I got an AffloVest! I'm loving my new portable vest! Also, career wise...we both switched jobs! Andrew also started Seminary this summer to get a Masters Degree in Divinity. He has always wanted to be ...

I feel so incredibly fortunate to have such amazing people in my life. This Father's day I not only celebrate my father (Grandpas, Father In Law, Uncles, and more), but I am happy to celebrate Andrew's first "Father's" day! He may not be a biological father, but he is a father figure and role model for all the kids we have in our home. Every year in the past I have focused my blog on my own father. I even wrote a blog "My Dad Deserves More Than One Day" - Please hop over and read it.  Because my dad is simply amazing and I think the whole world should know that. The picture to the right is of Dad and I dancing at my wedding. The song I picked for us was" You've got a friend in me" - It seemed the perfect fit. My dad is upbeat, fun, loving, and always there for me. This is one my favorite pictures because we are both smiling and laughing (shows our true personality).  I have my Dad's personality and this pictures reminds me that. :-) I...

I was lucky enough to try on both the Monarch and AffloVest (portable therapy vests) while I was in the hospital. Luckily, since those two hospital stays I have been doing fairly well healthwise. I caught one virus that knocked me down for a bit, but my immune system fought it off with meds at home. No hospital or IVs this time, whew. I have needed to be healthy lately, considering I have been super busy between work, "Shoes' Appointments (our FosterSon), and trying to plan the Princeton CF Walk. I'm super glad I am so busy with work. I have three closings over the next 3 weeks, YAY!  While I love working and being busy with life, it really has made me realize I need a portable vest. It's hard to get "Shoes" up and ready, while I do meds, and get my work stuff packed up too. So I am beyond thrilled I got to trial both vests.  I think both work really well and both would be effective. However, I really lean personally towards AffloVest in particular. Each one ...

Coming home from the hospital takes a balance..... Wait.... Did I just say home from the hospital??? That's right!  I get to leave Wednesday the 18th, after 8 days in the hospital. It was a logistical thing. I have a super important court date on for "Shoes (our AMAZING foster son) soon." So Doc knew before he admitted me that I would be leaving by that day... So what does this mean for me and my health??? Well, I need to make sure I continue the same treatment schedule I would in the hospital. So 4 sets of nebs a day. 8am, noon, 4pm, 8pm. Which means I finish my course of IVs at home. I will be on IV's at least until 27th (so 1.5 weeks left). I came into the hospital on Tuesday the 10th, but we didn't realize until Friday the 13th that my Psuedomonas is resistant to all of the antibiotic options for IVs except one med. So on the 13th we switched to Avycaz, which is a newer, hard hitting antibiotic that was brought to market less than 3 years ago. We were hoping I...

Typically, I've been very stable as an adult. I'm very lucky for that stability. However, 2018 started out nowhere near where I wanted. I was admitted mid March for a virus. We aren't sure what virus I had (every test came back negative). However, I had a consistent fever over 102 the entire 5 days I was in the hospital. Once I was fever free for 24 hours and I started eating better, they let me return home. I was excited to leave and get back to my everyday life. But, considering now a month later (and re-admitted), I think I should of just done a two week tune-up last month while I was in already. Live and learn. As you know (I'm sure) I have been trying to get my lung function back up to around 55-60%. 60% is my goal and it really is the highest my lung function can get, due to all the permanent scarring. I started Orkambi in October 2016. At that time it was the newest gene-modifier drug on market for CF patients (with my mutations).  After going on Orkambi I droppe...