Friday, October 2, 2015

Our Honeymoon

A Week to Ourselves:

Things at work are settling down a bit for Andrew, so it was ideal for us to finally take our honeymoon. Deciding on a Honeymoon destination was really tough. I didn't want to fly anywhere, because it was a lot of luggage (pic: 4 days worth explained on Facebook), we only had 4 days, and would cost a lot more. We wanted to get far enough away it felt like a whole new place. We aren't big fans of resorts, beaches, or anything like that. Don't get me wrong, I understand why people like them. But, to me they are overcrowded and I get burnt after 10 minutes in the sun. If I spend 1 hour in the sun I will be sick for two days afterwards (I believe it has to do with my skin tone & the combo of all the antibiotics I'm always on).

I started sifting through Midwest Living and they had a decently large article about the top "so-many" towns for get-a-way weekends. It told what the town was known for, along with recommendations for food and Bed & Breakfasts. I'm a HUGE fan of B & Bs. Beautiful and Historic homes, amazing homemade
breakfasts, and fantastic hospitality. When I first came across Stillwater, MN I thought 9 hour drive. Little far, but do-able. I googled my top 5 contenders. However, after reading about the historic and quaint downtown on the riverside, not to mention ALL the FABULOUS restaurant choices, we decided it was the place for us.

                                         I took this 4 blocks from our B & B, I mean look at this place!!!!

It was soooo perfect that we dream of moving there. It was perfect. Here is a description of our days:

Mind you: Most days we had to get up early (for all my nebs).  I took an hour nap most afternoons because I was tired from all the walking and would do more nebs if needed. But other than that and making sure we always had pills, my inhaler, my mints, and a bottle of water on us, it was a trip like anyone else would have. You just have to be organized with Cystic Fibrosis.

Day 1 (MON): Travel 4 hours to the Downtown of Cedar Falls (while doing morning nebulizers in car). Spend an hour  shopping and eating in Cedar Falls, then continued 4 more hours to Stillwater, MN. We stayed at Ann Bean Mansion, I picked it for Andrew. He loves towers, castles, etc. And our room was called the Tower Room, it had a trap door & staircase that lead to the 4th Floor  "tower" which had the best views in the house.
It had bath off to the right with a jetted, waterfall type shower that was HUGE and then another room (the bright white doorway) had heated floors, windows with a scenic view and the 2 person jetted tub. After touring the house a bit and loving all the historic features, I surprised him that night by taking him to Smalley's Carribean BBQ (which has been on Diners, Drive-ins, and Dives). Andrew also wants to visit all Guy's triple D spots. In June, while in Milwaukee I took him to the Comet Cafe (another triple D spot). So 2 down! To read about our Milwaukee weekend in June click HERE!

We just shopped downtown and enjoyed the riverside view! Our B & b was within walking distance, so I got to stare at homes built around 1800s by the loggers that worked in Stillwater.

Day 2 (TUES): We got a tour of the Courthouse (the oldest working courthouse in Minnesota circa 1866). It had the jail with original graffiti still and everything. Picture: the Jail used 1866-1970s -the tour guide said they even found a note from one prisoner to another just a few weeks ago. In the note the 1 guy offered "to off" someone upstate for the other guy...

 It once held the famous younger brothers who were involved with
Jesse James. I fell in love learning the history of Stillwater (the Birthplace of MN, where a convention took place and Minnesota was chartered into a state). We even got to touch a Canon that was used in the Civil War.

We drove a little bit out of town to visit the apple Orchard (which is where they give the Hot Air Balloon Rides). It was too windy for anyone to take rides, but down the road was a really good German Restaurant. We had a delicious lunch and we got the 4 beer sampler (I don't usually drink,but it's my honeymoon. I didn't drink a ton but I tried local wines, etc). We drove over the historic lift bridge that crosses the St. Croix River. Then we ate dinner in the George Washington Room of the Lowell Inn, which was built in the 1920's. Andrew took a picture for couple sitting a table away (it was her 82 birthday and her husband brought her there, he hadn't been there since 1940s). Picture: Andrew had the Bre Salmon with Lemon Buerre Blanc Sauce and I had Bacon wrapped scallops in a red pepper creamy risotto.

Day 3 (WED): We decided to do Breakfast in Bed that day. The innkeepers said we could every morning, but we wanted to meet the other guests, so we weren't going to at all. Then on Day 2 the other 4 guests (traveling together had to cancel, because someone broke their foot). So with just us with the whole B & B we figured why not. Picture: How cute was this? The Innkeepers wrote us a little note, even made my smoothie dairy free for me! Erin & Jeremy (& Amanda) were soo nice! Show them love and like Ann Bean Mansion on FB here!

 We walked around more, spent some time in the B & B, did the Trolley tour around town (I'm now an expert on the history of Stillwater and most of the sites. For lunch we went to a place called the Wheel & Wedge. FAVORITE lunch hands down. We got the big board sampler. Which included 4 salami/meats, 6 cheese (Torta from France, imported blue cheese, and meats, along with a couple local cheeses). They told us all about the cheeses and how they were made, shipped, etc. We even bought some and brought it back with us in our cooler.  Picture: Our Big Board from Wedge & Wheel. Told ya we picked Stillwater for the food! 

We sat by the riverside and then that night Andrew arranged for us to have a dinner cruise on the River. It was a two hour excursion on the Adiamo Showboat with a buffet. The views were amazing as the sun was setting! How romantic!

Day 4 (THURS): We bought some gifts up town, like a pair of earrings, some local tea, cran-pear balsamic vineager, and Tuscan olive oil. We toured the Warden's house which was part of the original State Prison. It is said to be haunted, due to the fact there was a great battle between two Native American tribes on the land. Then after the Prison was built, there were hangings in the backyard (the state was pro-death penalty), plus the prison burnt down, etc. The warden's house had a lot of antiques from the town, that locals used and donated. I didn't take any pictures, even though he said we could. I was too busy listening and awwwwing over everything. We found out that Nicole Curtis (from Rehab Addict) helps Stillwater's Historical Society save the older buildings in the town too!

We went back to the B&B and changed. Andrew had a surprise dinner/date planned that night. We went to the Dock Cafe, which sits right on River. They had a rose at the table and our 5 course meal selections. Then after dinner, Guillermo (dressed in traditional Italian clothing) came and got us from the restaurant, handed me another rose and took us to the dock, where we proceeded to have a Gondola Ride. Guillermo
introduced himself in Italian and English. Explained the Venetian tradition of kissing under the bridge was a blessing and sign of true love forever. He proceeded to row the Gondola down the river and back. The first half hour we spent looking at the town on one side of the river and then we turned the other way, facing the other side of the riverbank. It  was pure trees and nature. Andrew being "Star Lab" certified pointed out all the constellations, we even saw all of Pegasus (which apparently we can't in Illinois). It was so romantic and the last half hour Guillermo serenaded us with Italian Love songs.

It was the perfect way to end our stay! We stayed one last night in the B&B, had one last fabulous breakfast and headed back, doing my nebulizers again along the way... (thanks to my Pari Trek portable Machine that I got as an early wedding gift from my Aunt Tam!)

We hope to go back to Stillwater, It was so welcoming, relaxing, fun, and one of the best trips I have ever taken!

Now, tomorrow is the CF Walk in Peoria, so I will posting all about that in the next day or two! Along with other CF Fundraising news :-)

Wednesday, September 23, 2015

All the Updates!

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. But, it took so long to switch me over that I went without meds for a while...

I got added to Andrew's insurance on Friday. We turned in the paperwork days after being married, But his #insurance...
Posted by Cheriz: My Life with Cystic Fibrosis on Tuesday, September 22, 2015

The worst or best part depending on how you look at is the $3,000 deductible we will ALWAYS have to pay all at once (since my meds cost more than that). But at least we can prepare for it every January. I blogged about all the insurance & financial hassles that came along with my Cystic Fibrosis in last post (scroll down).

However, today, I wanted to give you all the updates. I'm very excited to share we leave for our Honeymoon on Monday! That's right in less than 1 week, I will have 6 glorious days to spend with Andrew! I will share about our trip when we are back on Friday, October 2nd.  Then on October 3rd we are attending the CF Walk in Peoria, IL! I helped plan the Peoria Walk this year, and I'm the speaker for the event. I was the speaker of the Champaign, IL Walk in 2014, check out the video HERE (on my YouTube Account). So if you are free, you should come and support the CF Foundation! It's a great walk route, actually I think it is the best (out of the 9) I have been too! Click HERE to go to my Peoria CF Walk Page to join or donate!

Overall, I'm doing okay, but I'm just waiting on the new insurance & pharmacy to get my Cayston & Pulmozyme filled. I need them asap! I have to have them before we leave for vacation. Luckily, the new pharmacy (where Andrew works) seems on top of everything. They call me everyday with an update on how the progress is coming. The problem is the specialty pharmacy doesn't have Cayston (It's a limited distribution med). Which means they have to override it and get the insurance to okay it coming from a different out-of-network pharmacy for the in-network price. Which is why it is taking longer, but hopefully I will have some great updates for you on Friday! Make sure to check out my Facebook page for the updates & to see how I am doing. Also, I posted this video from our wedding. I wanted to share it on here too, since I promised in my "Wedding Post". It was Andrew's Surprise for me. Right after I announced I had a surprise popcorn bar planned for him, he did this:

He's such a sweetheart, I can't wait to spend 6 days with him & for him to enjoy his time off work! Andrew, I love you so much!!!

Wednesday, September 16, 2015

Insurance, Coverage, and Marriage (An Honest Opinion)

Things to Consider:

First off, let me tell you that we considered everything I'm about to discuss. We decided extra money out of our pocket to pay more medical expenses was worth it to be married. We planned accordingly for those bills and made our decision. Also know, this topic is always the hardest to write about. It is embarrassing for everyone to know how little I did have (financially). BUT, It is the truth and it because of my Cystic Fibrosis I had issues working. So here is my TRUTH about insurance and financial struggles. Although, Andrew & I ended up pretty lucky though in the end!

But, not everyone is as lucky as us! Here is why we are lucky considering the system ( and please no political talk or bad mouthing political figures of either side, I will delete any comments that do. I'm not here to start a political war or debate). I'm not trying to bash our system, even if it has flaws, I'm just here to tell it like we have experienced everything.

Post getting married the insurance situation changes.

But let's talk Pre- Marriage, Cheriz Life:  First of all, did you know I can not receive disability even though I am disabled? I have 50% lung function, have asthma attacks frequently, and lose more calories than I can eat If I work. Plus, I have GI and bathroom issues frequently that make life difficult. However, you have to work full-time x amount of years per your age ("of paying into the system") before you can receive disability. So, If I (pre-marriage) even if I wanted to receive disability I couldn't have, since I never was able to work full time. I was born disabled. If you are born disabled the system assumes you live with your parents and someone takes care of you. That you only need a supplemental amount of income (because obciously you don't pay your own bills/way in life). So I could (& did)  receive Supplemental Security Income (which in IL) the highest amount per month you can receive to live on is $730. I received SSI (not because I liked taking money from the government, but that is the only way to receive full secondary medical coverage (which I needed on top of my father's insurance). However, if you receive SSI and choose to work part time (Which I did, as much as I could 20-30 hours a week), your benefits drop accordingly (which makes sense in some ways). But let's do the math:

So say I worked 20 hours a week and received SSI...

making $9.00 an hour at 20 hours = $720 a month. Now SSI doesn't take into account you don't get all of that (taxes, etc). So SSI says you makes $720 a month, $85 doesn't count then half the rest... = $317.5 deduct that from your SSI = roughly $412 a month from SSI plus wages (which your bring home $575 monthly)... That totals $987 a month. Which was okay, I could pay my bills. And post college, when I living by myself I found this extra money from SSI to be very helpful. Not going to lie, I needed the extra money. I pay $100 out of pocket for medications that are over the counter that I HAVE to take (not tylenol). And you can never get ahead. Have trouble saving for a car, paying off your student debt, heck I didn't even have cable or internet and potatoes & rice was a staple I ate. I borrowed a car from my dad for a year and a half...It was tough.

 So with $987 left a month I paid the $100 in meds, rent, utitlities, food, toiletries, gas, car payment (oil changes, etc), and student loan payments. Now when I was in college I didn't work, so I lived off of $650 a month (which was SSI amount in 2006). I paid rent, utitlities, food,and meds. I still managed to save $20-$50 a month while in college.

Here comes the tricky part. You aren't allowed to have more than ( I believe at the time was) $1,000 in savings, BUT if you have a reason to save (Big medical bill, etc) you can set up an account, put X into, and not touch it until you reach your goal. Once you reach the goal it must be used for that goal. So I did that. I
saved $20 here and there all through my 4 years at U of I. So when I came home I could buy a car and have a down payment. I needed the car to get to work and doctors appointments. I graduated in 2010 and  in 2012 I had finally enough for a down payment. (which is oddly one of the first blog posts I ever wrote, I started the blog right when I bought my car in Feb 2012).

[Please note: I did have to do laundry at my parents from 2010-2013 & Dad let me have his car from 2010-2012 (until I could afford one), so there was help. Also, please know my parents would have done more, but I never wanted them to. I'm an adult and can stand on my own two feet!]

I was nervous to make over a certain amount or I'd lose my SSI ( no big deal with a high salary), except with that I lost my dad's and secondary insurance. And most places I looked insurance policies didn't cover specialty drugs, etc. So you are stuck. But, I kept paying off my car and student loans. And I did alright, never had extra money, but I managed. In 2012, I met Andrew, and he started to save money once we started dating. We researched everything eventually and knew what marriage would mean financially and medically before we even got engaged. It was a decision we made together.

Now Post Marriage:

Here is what happened. I obviously, lost my father's insurance and lost my secondary insurance. Andrew makes too much a month (Wish they looked at the bills and the not the amount). We knew we wouldn't have a secondary insurance, but we got lucky in the sense that the company he works for has decent benefits. We
pay out for the higher deductible plan, because we need it. It covers 100% hospitals, doctors, specialists, prescriptions, even specialty drugs once our deductible is met. Our deductible each year is $3,000 per person/ $6,000 family (luckily, we don't have to reach his $3,000 before I'm 100% covered). So we have to pay the $3,000 on me and tah-dah I'm covered.

The part that bites is that every year I'll meet that $3,000 in the first month. Heck, funny story, My first thing I even will do on Andrew's Insurance (which starts tomorrow, fingers crossed) is order Cayston (a prescription that costs $6,700 per month/script). So out of our pocket will cover our WHOLE deductible. Then the fiscal year starts over in January and good-bye to another $3.000. So in the first 6 months of our marriage we will have paid $6,000 on 2 of my meds. Really I don't think $3,000 a year is too bad considering all the costs on my meds...

We just have to plan ahead and be prepared to pay out for large prescriptions right away at the beginning of each year. I figure as long as I'm working part-time, I'll make more than enough to make up for the deductible, etc. I know it's taboo to discuss numbers, but whatever this is real life. I will not say what Andrew makes, but I will tell you what we pay, etc.

Things we (and most people) pay every month (estimations):        
$775 Rent/Mortgage
$100 Utilities
$50 Internet (no cable though)
$100 for two cell phones
$70 monthly insurance
$200 Student Loans for both of us
$50 Gas, car maintenance
$200 Food and household Stuff
$100 over counter meds
Roughly TOTAL $1,645

Add in the cost of a $3,000 deductible at the beginning of each year and I can't complain too much.

I mean look at what the insurance pays per month:

Albuteral: $108.89
Hypertonic Saline: $61.94
Pulmozyme: $2,483.44
Cayston: $6,786.02
Tobi: $8,012.17
Advair Disc: $321.20
Albuteral Emergency Inhaler: $26.71
Zenpep Enzymes: $4,194.21
Flonase Spray: $102.19
Vitamin K: $370.25
Vitamin D: $7.50
Calcium: $1.28
Zithromax: $186.80
Mediport Needle (for monthly stick/flush): $174
Saline Solution: $20
New Nebulizers: $36.17
TOTAL the insurance pays: $22,892.77
 (which is why insurances always fight to pay stuff, saying we "don't need it"- I mean...dang that's a lot...)

But I want everyone to know Andrew & I are lucky compared to some. I know a lot of CFers that don't actually get "legally" married. If one spouse can't work and the other barely makes over the SSI amount by even $1 and their bills exceed their income... They are screwed, so it's a big decision for a lot of people with medical problems. If you are single, have CF, and can't work you may get disability if you worked full-time long enough, but let's say from age of 20 years old you weren't healthy enough to work full time (and have only worked part time like me)... Now at the age of 30 you could have 20-40% lung function not be able to work at all,... Imagine trying to fully live of $730 a month for your entire life. THIS IS a REALITY with CF. We are born "disabled" and by the time we are old enough to get a full time job, some of us are not healthy enough to work. Not with everyone, but it is for some. Please enjoy your work, marriages, children.

Don't take it for granted, some would LOVE those options.

To read other CF related issues that pop up with Marriage/Moving read this past post here: "Moving & CF Doctors"

As a CFer marriage is a tough decision medically and financially.  So I'm thankful I have Andrew, that I get the privilege to be married to him and call him my Husband!

I will let you know how the insurance goes. As of now, I'm still not covered yet... So we are waiting on Corporate so I can fill my meds! But I think it should only be a few more days...