Working/Marriage

[tucker21]

Hello all! I'm Casey, 22 years old from NC. I was diagnosed at 3 months old. CF is pretty well controlled. I recently graduated college, wih Medical Assisting as my major. I absolutely loved it. I also have been dating my boyfriend for almost 5 years.

I have talked to a few people about this, but I'd love to know what other people's experiences are. I am on Medicaid/Medicare and recive SSID monthly. I have never actully worked a full time job. I am scared that if I work all my assisitance/benefits will be taken away. It's just not worth losing. I was told I can work no more than 15 hrs weekly, and gross no more than $1,010 monthly, which is not a lot more than my SSID is now. But I would love to do something. I was also told if I was to work, Social Security might question me, and take away my benefits. It's really not fair. It's like you have to make 100k and have terrific insurance to take care of a CF patient.

My next dilemma is marriage. My boyfriend is self employed farmer. He don't make enough now that the medicaid would be lost if we were to get married, but eventually he would. What is everyones experience with this?

 

[beautifulsoul]

Hi Casey. First of all, Welcome to the community and Congrats on graduating College!

I really don't have expertise on this subject. I know some info here and there. I can't help you as much as you'd like but I know there are several other CF individuals and couples that are in your same or similar situation with insurance and financial issues. There is a member on here that knows more about this particular subject and I'm hoping she will she this and respond as well as others in the same boat.

From my knowledge, there are some CF patients that are not "married" as in signed official government documents. They celebrate with a wedding ceremony and reception, wear rings, call each other husband and wife. My personal point of view is that you are married under the eyes of god and it doesn't matter about an official document signed for government use. While there can be some arguments because of that, it's really all about what each couple can agree with. They figure that out for themselves. There is a lot of debate with what is "right" and what is "wrong"

 

[Daverog75]

Your health is the most important so keeping those medical benefits is key. getting married might may cause you to loose those benefits then Amber's suggestion makes a lot of sense.

Dave 37 w/cf

 

[65rosessamurai]

I'm with Dave, sometimes circumstances dictate what's best for you. If things get better in the future, then perhaps making changes to reflect upon it would be pertinent at that juncture.

In regards to your graduate degree, if there are things you can do to "excercise" that knowledge without compromising your health care situation, perhaps some added satisfaction may come your way.

Good Luck!

 

[Heather0326]

Hello all! I'm Casey, 22 years old from NC. I was diagnosed at 3 months old. CF is pretty well controlled. I recently graduated college, wih Medical Assisting as my major. I absolutely loved it. I also have been dating my boyfriend for almost 5 years.

I have talked to a few people about this, but I'd love to know what other people's experiences are. I am on Medicaid/Medicare and recive SSID monthly. I have never actully worked a full time job. I am scared that if I work all my assisitance/benefits will be taken away. It's just not worth losing. I was told I can work no more than 15 hrs weekly, and gross no more than $1,010 monthly, which is not a lot more than my SSID is now. But I would love to do something. I was also told if I was to work, Social Security might question me, and take away my benefits. It's really not fair. It's like you have to make 100k and have terrific insurance to take care of a CF patient.

My next dilemma is marriage. My boyfriend is self employed farmer. He don't make enough now that the medicaid would be lost if we were to get married, but eventually he would. What is everyones experience with this?

I found it really interesting that you brought this up because I am currently in the exact same situation as far as Marriage goes, my CF is not doing as well as we hoped and I'm preparing to go to an evaluation for a Transplant, But it is really hard with this situation because its basically like choosing between "Getting the medication and healthcare you need to live so you can spend time with the people you love and giving up on the whole idea of future dreams as Husband and Wife...... OR..... Being Happily Married and working yourself to the ground because you cant afford all the medication you take on a daily basis that your body couldnt really sustain itself long without to begin with".... there is Common Law Marriage, and there is the actual Marriage Liscense, and a Religious Marriage so to speak..... Common Law is basically you have lived together for a while or claim eachother as your spouse without there actually having been any ceremony or signed papers, there is the obvious Wedding that everyone wants, and the Religious marriage is when you and your other half and your families know what is in your heart and God knows whats in your hearts. some of my family members have recently told me about some of the things that meant marriage in the older days too.... Also, here in Texas where I live there is No traditional Medicaid left so they split the benifitiaries and placed everyone in other Medical Insurance Programs, if that is something you may be going thru as well check into what the Income limit is with the new insurance and ask a social worker about anything they may know about it as well..... its something that I have begun working on months ago.... I hope this may help in some way and if you find something please share.....

 

[LouLou]

Tucker, Why do you qualify for SSDI and when did you become 'disabled'? Do you feel you are able to work a 40 hour work week M-F without compromise to your health? Without knowing more about the status of your cf I find it difficult to advise.

 

[cfqueen]

Hi Casey, I urge you to call the free and confidential CF Legal Information Hotline for guidance with your issues. The Hotline is established for the CF community of patients, parents, clinicians, etc. Here's the contact info: 1-800-622-0385 or CFlegal@cff.org

 

[calebf]

Insurance definitely limits your options as a young adult with CF. When I was 19 I was lucky enough to land a job that included health insurance. I was only making $30k/year. I'm 23 now. I've switched jobs to make substantially more and am on my employer's health insurance plan. If I were to lose my job before I turned 26 I would go onto my parents' plan.

At some point I am looking at being self-employed, my parents have always been self employed and they have said it would be around $1000/mo to pay for it on my own. For a husband and wife it is more.

My advice, since you're 22 years old insurance companies are required to allow you coverage under your parent's policy. If this is an option and your parents have sufficient insurance I would take it. That would give you the freedom to explore career options without needing to worry about insurance.

If you can work full time I would make health benefits a requirement in your job search. Most employers offer health benefits. For example I know Rite Aid offers very good insurance coverage if you work full time even in an entry level position like a pharmacy tech. There are a lot of employers that offer similar benefits.

 

[Hardak]

Check with the legal aid that CFqueen mentioned above, you might also want to consider doing the marriage thing but falling just short of signing the papers for the state. This may or may not be useful/appropriate for your beliefs. You may or may not run into issues of common law marriage as well, again ask CF legal.

 

[65rosessamurai]

My opinion is that marriage is harder on the CF male...maybe just for me, cause i'm the bread-winner.

Anyway, another thought that came to mind is that depending on the state you reside in, seven years of living together may be an "automatic marriage", so it would be good to look into that as well...especially if it changes your qualifications.

 

[Gorf]

I am 47 years old, have a son with no CF, I was diagnosed at 3 years old. My stats stay in range of 50 top the last 2 years to 29 lowest. Spent 3 times in hospital last year, 2 times this year so far. If not in there I work 40 hours a week, on my feet all day, I will do so till I can't anymore. Been married twice. I am not receiving any benifits from state as of yet. If your religous get married in the eyes of the Lord, he knows your heart. The state is the only one that demands a simple piece of paper.

 

[Heather0326]

Hi Caleb, if you dont mind my asking what sort of field of work do you do? both when you were 19yrs and now as well? Just curious because, I have been doing lots of research on several careers I have had interests in, and how I could integrate them, so that maybe I could find a career that I can do even if I'm put in the hospital or something. And do you have any advice on some that may be best to stay away from, or to look further into?