Blog's Birthday: Problems with Marriage

Happy 3 year Birthday/Anniversary to my Blog!   

I can't believe I have been narrating my life in a blog for 3 years. Seems a little self centered when you think of it that way. HOWEVER, I'd like to think of all the changes that have come about because of my blog in the last 3 years!

I wrote a blog entry on my Blog's 1st anniversary and 2nd anniversary. In my 2nd year blogging anniversary post I brought my readers up-to-date with the changes I had made since I began blogging. Read those entries to remember where I was in life at those points. Since the 2nd anniversary (in the last year), I've moved to the DeKalb/Sycamore area, decided to go back to school to get my real estate licenese (and finished all my courses). Plus, I got engaged to Andrew (and will be marrying him this fall)! I'm one lucky lady!

In the last 3 years, not only has my life changed a lot, but my blog has really grown! I enjoy blogging about how CF influences my life. Why? I guess 1. It's therapeutic 2. I'm super outgoing person and always have been an open book 3. My blog has grown so much, it's hard to believe.  Let me desrcibe a little about how this blog and the CF support & awareness has grown since...

First off, I've gotten VERY involved in CF Fundraising. I attend 4 CF Great Striddes Walks a year, we attend the  Chicago CF FestivAle, and for the past two years Andrew has competed in the Chicago CF Climb. This Fall, Andrew will be doing the climb, along with me and another friend (as long as I don't get sick again). We are also planning on inviting a few friends to attend the FestivAle with us too! That's key... keep the number of participants growing... So overall, that's at least 6 CF events a year (averaging 1 every other month). And we try to increase the number of people that attend with us each time (even if only by 1 or 2 people).  Please check out our Team Page on my blog HERE to see all the events we attend and how much we have raised every year! It is amazing to look at that page with all the numbers from 2012- 2015 and see how much we increase in people and donations EACH YEAR!  I think my blog has really helped ourTeam (Team CF2) to grow and spread awareness. We even have a facebook page.  We have grown from 2-3 friends attending walks, to over 100+ people attending half a dozen events each year!  And I'm soooo incredibly thankful to EVERYONE who has ever donated or joined our team! Thank you!


Also, I want to discuss an important topic...

(check out other CF & Marriage/Wedding Topics HERE)

Since I'm getting married this fall, I had to check into insurances, etc to make sure we CAN get married. Isn't that sad??!! At one point I wasn't sure how we would get married. And some people (CFers) don't get married  because they can't afford to lose their medical benefits. In fact, its worse than that... I've been talknig to various people online about CF & their marriages. A good chunk of people never actually get married when they have CF. Why? let me explain some issues.

(please know this isn't true for all CFers, it depends on the individual's health, etc; however, according to a lot of CFers I talked to.... they had similar experiences to mine)

So I'm telling this not to feel bad for me, and heaven knows its embarassing for me to admitt, BUT its a reality.

Some CFers can't work full time (I'm included in this group). I try working as much as I can, but really I struggle healthwise with anything past 30 hours. I worked various jobs to pay my bills. Even though I can't work a full time job I still have all the bills: Rent, Utilities, Car insurance, Cell phone, School Loans, Food, and some out of pockets medical expenses. I never had cable or paid for TV or internet. I took my laptop to the train station and blogged in my car. I had to be stratgeic, I accepted used clothes from friends who were similar sizes when they were cleaning out closets, and I made my food from scratch to eat cheaper. I didn't get data or a smart phone, cable or internet until Andrew & I were a couple.

In college, while going to school I couldn't work during the school year at all. I received Supplemental Sercurity Income during this time.  It was a total of $650 a month. I paid $400 in rent/utilities, $60 for cell, $70 for my insurance and had a $130 left for school loans, food/tolietries, auto repairs, and any other expenses. Needless to say I was broke all through college. However, I'm just proud I'm not in debt (other than student loans). And because I lived so frugally I was able to focus on my health and grades. I graduated with my bachelors after 5.5 years (not counting the 3 semesters where I took medical withdrawal due to surgeries/hospitalizations). So whew college was rough... But, after college it didn't get easier.

I tried working 30 or 35 hours to see if I could handle a full time job and my health dropped dramatically. So instead I had to rely on part time work.  Some people with CF receive disability (which is a couple hundred dollars more a month than Supplemental Security Income), but in order to receive disability you have to have worked full time for X number of years first.  Only problem is I've been disabled my whole life. At what point was I supposed to work full time? during high school, college??? By the time I graduated college I was around 40%-50% lung function, while doing all my treatments, being in the hospital off and on...working full time wouldn't work.  The SSI amount I got right after college was $700 a month. However, my expenses went up. Car payments $120 ( got a decent/ used car to get to work/docs, etc), plus school loans start needing to be paid off $150, plus I had 4 medications doc added that were over the counter ($60)... so that SSI $700 didn't cover my costs, let alone allow me to buy food. Luckily, I AM able to work. I worked as much as I could (not all CFers can, some are on oxygen full time or are waiting for a transplant for years). Making minimum wage working 25-30 hours a week, I brought home around 850 a month... Well, if you make money obviously your SSI amount decreases...In fact it went down to around $180 a month...  Luckily, I was able to live off that $1,000 a month for a while (a total of $12,000 year & still pay my student loans down little by little).

Many CFers are not as fortunate as I was. Now insurance how does that play a role?

Luckily, my father was smart and had me labeled "disabled" for his insurance, which meant I could stay on his insurance as long as: 1. I'm not married 2. I'm not working full time 3. He doesn't retire (poor man)

Well, if I kept the SSI that qaulified me automatically for a medicaid as a secondary insurance. Wow, lucky I know. With a secondary insurance on top of my father's, I never had to pay co-pays, or anything extra for meds. When his didn't cover the full amount medicaid picked up the rest.  Once you lose SSI, you lose the secondary insurance and you're paying a lot of out pocket expenses (I have over 50 medications/treatments). Some cost over $5,000 each.  Some CFers can't afford to marry and lose their medicaid or other medical benefits.

Actually a lot of CFers online said their spouse and them had a "faith ceremony in God's eyes" just not a legally binding one. This allowed them to keep their supplemental income and therefore, the insurance. How sad???

Andrew and I were facing this problem (of not being able to get married) when he worked full time at Culvers. Many franchises don't have to offer benefits, if they have a small enough staff. Which meant even though Andrew was Assistant General Manager, he got squat for benefits. Which means we'd pay boocko bucks to get coverage. Also, once we were married I'd lose all my health insurance (Dad's & Medicaid). Luckily, Andrew is simply the most amazing man ever ( okay, perhaps tied with dad). He decided to be proactive and found a job last fall (in September) that paid better AND had amazing benefits. He always thinks about how everything will affect me & my health. He checked into adding me to his benefits a while ago and made sure he knew exactly when we needed to do that.  He works sooo hard, I never thought I'd find a man who would work as hard as my dad. Andrew wanted to make sure I'd be okay healthwise if we got married, he knew he'd be proposing in December and wanted to marry me soon, so he went job hunting in September. I'm soooo proud to call him my future husband. My parents couldn't be any prouder of him either! My whole family is absolutely thrilled I have found such an amazing man. We all love him!

So while I'm lucky that Andrew has good benefits, not all CFers are in the same situation. I know Laura was never legally married to Joe (due to not being able to work and needing her SSI/insurance, especially if she had gotten her new lungs). How sad is that??? I can't imagine.

I'm VERY thankful I'm not in that situation. I can't wait to have Andrew's benefits (haha, that sounds bad). I'm more excited to be married to him, but we both are looking forward to me being on Andrew's insurance. It's time I let my dad retire (its a tough manual job and I live with guilt every day that he does the work he does and sometimes for 12 hours a day 5/6 days a week for me). CF & marriage presents a lot of issues, this is just one of the biggest ones.... And it infuriates me that it happens. More sad & infuriating news that I need to update everyone one is that beautiful Cloey- who I blogged about the other day- passed away. 13 years old , fun lovin, just an amazing little girl. too sad.

So here's to hoping for future medical advances, future research trials, and hopefully one day soon a cure, so no other children or young adults have to go through what Cloey, Alyssa, or my beautiful best friend Laura did!

If you didn't take a look at our Team events page. Please do and consider joining our efforts by participating or donating (if you have questions, let me know).