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.
I mean look at what the insurance pays per month:
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...
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:
ONE MONTH SUPPLY OF EACH MED COSTS:
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...
Thank you so much for this great information! I don't believe I'll get married, but it's nice to know what to expect to weigh the pros and cons if it ever comes up.
ReplyDeleteI honestly never thought I would. 1. Never thought id find someone cool w my CF and 2. Thought it would be impossible from insurance. I got pretty lucky and its sad we have to make these tough choices. Its hard but can be done sometimes.Which is what I wanted everyone to realize. I'm glad it helped give you more information. Informing others was my sole intention for this post. Thanks!
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