Relationships.....how can you make it last?

[setLOVEfree]

Hi,
im in a relationship with a guy, we've known each other 11 years but have been together about a year. There is a ring on my finger, but we can't marry due to medical insurance, assistance , etc.
we survived my 24 day hospital stay, now I'm home recovering and we've had some arguments, etc.

how does a cf'er not feel like a total drain on the other person? Financially I'm no help, I get disability which is small so I can't pay the mortgage etc. I do get groceries here and there.

he mentioned " what's my pot of gold" like long term....what does he get to look forward to? Um, misery in a nutshell.

I try to keep up the house, have dinner ready when he gets home, have house picked up and laundry done. But he definitely gives more because he's able. It's sooooo hard emotionally to know I don't have much to give.

How do other relationships survive the cf situations we have. Currently I haven't worked in 2 months due to being sick, hospitalized, and recovering at home from surgeries etc. it's a hard recovery but even when I go back to work, I can make the SS guidelines, so roughly $1,000 per month. Not getting rich there. And looking at Medicaid, so I wouldn't work at all, which again makes me question my purpose, and again not contributing to our household.

while arguing it comes up I don't contribute, so I think deep down it bugs him. But he won't say anything otherwise.

please, any advice on how you make it through this. How you feel, etc, I'd appreciate it. This is hard and I don't know how people do it.

thanks, Kelli

 

[Beccamom]

I just want to let you know you are not alone. I am 36 and have been married for nearly 15 years. I only recently was diagnosed with CF and without any hospitalization etc this has taken a toll on my marriage. I am able to work only part time and now spend many of my days off at doctors etc and we also have a child with her own medical needs.

I am currently reading the book the Love Dare and doing the Dares. I caution that This is a Christian book and would be offensive if you followed a different religion. The basics of the book are all of the other things one spouse can contribute to a marriage. This is not about contributing money or always being able to do the chores. This book has taught me that listening to my spouse, foreseeing something he needs and doing it before he asks, and adding happiness to my spouses life is more important than money and chores. When we got married we had the same job and income so we both contributed equally financially, but now we both must contribute equally emotionally.

Best wishes.

Hi,
im in a relationship with a guy, we've known each other 11 years but have been together about a year. There is a ring on my finger, but we can't marry due to medical insurance, assistance , etc.
we survived my 24 day hospital stay, now I'm home recovering and we've had some arguments, etc.

how does a cf'er not feel like a total drain on the other person? Financially I'm no help, I get disability which is small so I can't pay the mortgage etc. I do get groceries here and there.

he mentioned " what's my pot of gold" like long term....what does he get to look forward to? Um, misery in a nutshell.

I try to keep up the house, have dinner ready when he gets home, have house picked up and laundry done. But he definitely gives more because he's able. It's sooooo hard emotionally to know I don't have much to give.

How do other relationships survive the cf situations we have. Currently I haven't worked in 2 months due to being sick, hospitalized, and recovering at home from surgeries etc. it's a hard recovery but even when I go back to work, I can make the SS guidelines, so roughly $1,000 per month. Not getting rich there. And looking at Medicaid, so I wouldn't work at all, which again makes me question my purpose, and again not contributing to our household.

while arguing it comes up I don't contribute, so I think deep down it bugs him. But he won't say anything otherwise.

please, any advice on how you make it through this. How you feel, etc, I'd appreciate it. This is hard and I don't know how people do it.

thanks, Kelli

 

[welshwitch]

Hi,

so sorry you're in this boat. But I'm curious: why do some CFers choose to not get married for financial reasons? Can someone break it down for me re: disability benefits, etc? What's the best way to know which route you should take?

 

[iefisherman]

Well Kelli, If he wants someone to talk to i can give him my number or email. I am a hardworking driven cfer going through the same thing right now. I feel bad for being out of work and not making what i did. I have a great girl who is here for me through it all. She is in a custody battle for her kids and i'm out of work due to restrictions after a blood clot from my port. it has been court fees and hospital fees since we got together. The good thing is we always back eachother up and we have someone on our side through it all. CF is a hard and draining mental hurdle. So are relationships. It takes work to make both work.
Ben

 

[lilmac1177]

my advice is to move on until you find one who doesn't make you feel inadequate but, instead, knows you are doing the best you can! they ARE out there, believe it or not ... i spent four years in a relationship w/ the "money-maker", thinking he must really love me because he stuck around, only to realize more and more that he was more generous w/ his money than his time, attention and support! looking back now, i wonder HOW we lasted as long as we did when I should have been the one considered gracious enough to stick around. in that four years, he came to see me during ONE of many admissions and even then i had to cry and whine about it for him to do so! ironically, he is the one who ended our relationship, but you know? it SHOULD have been me and it was the best thing he could have done for me! ... after a year single, i'm now in another committed relationship (four years strong!) - like you, we can't marry right now due to assistance, insurance, etc - and he is truly amazing!!! not once has he made me feel inadequate, or worthless, or like he has nothing but "misery" to look forward to! he tells me often how amazing he thinks i am, even if i let the house go or don't make supper every nite or let our laundry pile up (and sometimes that's due more even to laziness than sickness); i'm a worry wart by nature, but he tells me the worry, about finances let's say, should be on him and not me. if anything, i'm harder on myself for not being able to work full-time and contribute as much financially ... at least i WAS, until it finally came to a point that i had to reason w/ myself that i could no longer physically handle a full-time job and chose my health (and what assistance i do manage to get still holding a "very part-time" job) over my pride. this is God's honest truth: i've been the healthiest that i had been in a good long while since Josh and i started dating, and i attribute that, in part, to much less relationship stress.

seriously, you have enough to worry about without stressing over things out of your control! i'm sure you have plenty to give, though maybe not financially, and shame on him for thinking your efforts are not enough! i'm not one to whine and complain to anyone and everyone who'll listen, but if these significant others could live just ONE day in our shoes, they'd come to realize that taking care of yourself is a full-time job and it's not all sunshine and rainbows ... even if we DO "get" to stay home all the time!

good luck to you!

 

[beautifulsoul]

Hi Kelli,

I can relate to what you're saying. I'm in a 2 and a half year relationship and I've felt the exact same way you are feeling. It's a hard thing to accept and I've seem to have gotten past it. I receive disability income as well. It's just enough money for me to pay for groceries, my cell phone bill and some of our apartment rent. (not even half though) My boyfriend is really understanding of my situation and appreciates whatever money amount I am able to contribute. I contribute other ways like cleaning our apartment kitchen, bathroom, vacuum, dusting, laundry, & washing dishes. Sort of like a house wife role. I pay for a nice dinner out every now and then. I always give him hugs, kisses, little notes in the kitchen. I'm a crafty person so I make him stuff sometimes. Just little extra things here and there to make him feel special. From what I've learned so far, relationships are not all about making things "equal"

I don't mean to be offensive or anything but before I began a relationship I already knew I would need someone who would be financially supportive. The economy today obviously isn't good so it makes it even harder for everyone. If he TRULY loves you no matter what under ANY circumstances then he definitely should not be bothered at all by your situation or arguing with you over it. It's not like your doing it on purpose. It almost sounds like he's saying you're not good enough. If that's his intention then I would move on.

Keep in mind, that some people (not everyone) with CF are not "officially" married. (meaning signed government documents) They still celebrate with a beautiful wedding ceremony and reception without signing anything. Again, in my personal opinion, I would be happily married under the eyes of god and do not need an "official" piece of paper that says so. Otherwise, I would lose all medical insurance for my medicine, hospital, etc. and would basically die.

I hope I could help you a little bit. Feel free to Private message me.

I wish you the best

*hugs*

 

[beautifulsoul]

Hi,

so sorry you're in this boat. But I'm curious: why do some CFers choose to not get married for financial reasons? Can someone break it down for me re: disability benefits, etc? What's the best way to know which route you should take?

This is an off topic question that differs from the original poster. I'll answer it briefly. If you still have questions feel free to pm me.

Some CFer's choose not to get married for financial reasons because people like me who have insurances like Medicare & Medicaid would lose our health benefits that pay for medicines, hospital stays, doctors visits, etc. A decent example would be: (pretend I'm married) If my husband has a career with health coverage that wouldn't help any payments towards my medical needs then we would have to pay out of pocket. Therefore, that would put a HUGE cut on his/our income. Now, say my husband has a great job, awesome health coverage that will actually help and pay for the majority of my medical needs then, yes, why not be "officially" married. On top of all that crap, disability income will change once you're married and the amount of SSI I receive will depend on my husbands salary. That's an explanation of how some of that works from the information that I know of.

Someone please correct me if I'm wrong about any of this. Thanks.

 

[lilmac1177]

On top of all that crap, disability income will change once you're married...Someone please correct me if I'm wrong about any of this.

Social Security Disabilty (SSDI) is different than Supplemental Security Income (SSI) in that the amount of SSDI you receive is dependent upon how many work credits you've gained and that amount will not be affected by getting married (his income), nor will you lose your Medicare health insurance as long as you're receiving SSDI (which you will be as we all know CF isn't going to just "go away"). for many years I was on SSI until, unbeknownst to me, i had gained enough work credits over time (at that time i was "healthy enough" to work) that it kicked me out of SSI and into SSDI. SSDI and SSI are all federal monies. That being said, i DO receive a type of state medical assistance called SLMB (Specified Low-Income Medicare Beneficiary) - thru the Medicaid program - which pays my Medicare premium (which is over $100/mo now, i believe) and allows me to have zero deductible and very low co-pays for prescription drug coverage. Medicaid, being state funded, i would most certainly lose if i marry because it's based on my (low) income and we are in no position, financially, right now to risk it.

it's all very confusing (and frustrating), but i hope that clears things up a bit

 

[welshwitch]

Thanks to you both! Didn't mean to hijack the thread but I'm really grateful for the info

 

[LittleLab4CF]

If I am hearing you correctly, you are feeling sick of being sick. We all go through it whether it is an unrelenting cold or a fatal chronic wasting disease like CF. Or so it can be. If I had the foreknowledge at 22 my ultimate diagnosis would be CF, I probably would have been more concerned about my partner. It wasn’t that I was certain my life would be average and long, my symptoms were identical to the father I had buried at 20. I married in 1980 and my dear wife had no illusions over the potential short term of our vows.

Avoiding diagnosis for such a long time colored my life with a little more rose than most wearing the label of cystic fibrosis at such young ages. CF be damned, there is nothing wrong with your compassion, capacity for love, tenderness and a host of virtues that come from having to separate disease from living. That cuts both ways in that somebody has loved you enough to be genuinely jealous of CF. It might get you instead of him/her.

In the last year I experienced something CFers all know about, a decline in my health. It is natural at my age and unnatural at any age younger. I have been masking how bad things have gotten by timing my up time to coincide with my wife’s comings and goings. The rest of the time I might be in bed. Recently my wife was diagnosed with a very early breast cancer. Sometimes knowing too much about something is worse than too little. This was her second cancer in eighteen months and though the two were unrelated, numbers don’t easily lie to me. In spite of the fact that her cancer was at its earliest possible stage, the “cancer day surgery” cut short of the mark and they are going back in two days. As worried as I am about her right now, one overriding concern has been that added to her personal trauma my deterioration was bound to be discovered. And it was.

My wife and I have never had the typical kinds of marital problems. We chide each other for being too kind or forgiving or argue how best to bail an errant employee out of jail, in another state. It seems it always has been that way but it really wasn’t. One piece of good luck was that either of us could easily support us comfortably. I know very well just how fortunate we are to have this. As a result, money wasn’t an issue to grumble about. We have been joined at the hip since our wedding vows. We both took and take those promises to their fullest extension. We all know the words and the “for richer or poorer, in sickness and health” or such, but they speak to people entering into a marriage.

The formal process of marriage has taken some hits since my parents day when divorce was rare and sour marriages weren’t. A process not unlike the more formal courting I was cultured into has taken hold. Committed relationships have been placed in a crucible and all the fluff and circumstance has been burned away. What remains is what always has, a depth of personal commitment between two people intent on making a life together. The pot of gold requires a lot of toil and patience but it can deliver riches beyond the dreams of avarice. That reward is more the vessel that you stir human relationship in. Sometimes it will simmer, other times it may boil with rage but if you can build a worthy vessel, the reward will transform through constant tending.
Don’t sell you lover short. We are biologically wired for picking out irregularities and imperfections in the opposite sex. As humans, we aspire beyond the physical and everybody with CF or in love with someone with CF knows, life doesn’t get much more intense. On the flip side, what guarantees can your lover give you the he or she is going to be healthy in a year or ten? What may keep you faithful may cause your lover to stray. Your character and devotion may be no match for your lover’s.

The bargain is this. You and your lover are moving toward a committed relationship, possibly involving children. CF has never looked so bright, as a disease. The limited help of Ivafactor (Kalydeco) is not just a fluke but a dam bursting. I am of the firm belief that CF symptoms will be medically eliminated in five years. I am rarely wrong on things like this but coming up the backside of genetic medicine is a very deep understanding of ion channels that in the case of CF holds
tremendous promise for a basic drug to affect a good effect on mucus formation.

Lap up Love,
LL

 

[beautifulsoul]

Thanks for the clarification Marcie. I receive SSI income. I've never had the chance to work since I became very ill at the young age of 11 and transplanted at 15. I obviously don't qualify for SSDI. I agree ALL of the payments, no matter which one are definitely confusing and frustrating as well!

I'm glad we could help you (even just a little bit) out Welshwitch

 

[Iamqueenofeverything]

I have been in the situation where the guy was afraid of the finances of cf. i have been in relationships where people are afraid of me dying on them. i just look at this as immature. everyone will get some sort of disease at the end and every one dies. i still haven't found the guy i want to marry.
all i have to say is that there is no garentee that any relationship will last a lifetime. sorry to be negative.but i think it's just the way of life. people change or move away or have something that makes them stop having a relationship with another person.
something positivite- the only way to have a relationship is for two people to always have communication openly and talk about the solutions to problems and don't hide anything. if two people do this then it will be alright.
the love dare book is awesome!!! watch the movie, fireproof too! the love dare book is in this movie and can show you how to use the book!

 

[beautifulsoul]

i have been in relationships where people are afraid of me dying on them. i just look at this as immature.
something positivite- the only way to have a relationship is for two people to always have communication openly and talk about the solutions to problems and don't hide anything. if two people do this then it will be alright

The first sentence I quoted... I've been in the same situation and I agree. It's very immature and in my personal opinion also selfish. (I have reasons against him for why I think he was selfish) Great advice about communicating and talking openly of solutions to problems. Nothing will change (for the better) if you don't communcate and understand each other. Relationships are a bit more difficult when CF is invloved.

 

[welshwitch]

Anyone who is worried about you dying on them has to go. That's the last thing you need. You need someone who will be supportive, there for you, and mature enough to handle it. Anyone else -- give them the boot!

I was once in a relationship where the guy was really worried about that. I spent the whole 3+ years of the relationship trying to convince him I was OK. Um....lame! What a waste of time. He ended up dumping me anyway. Now I'm with a guy who is totally cool with me, my health issues, and most of all loves me and will BE THERE. I don't need anyone dragging me down w. their crying/whining anymore I'm going to be around a long time, dammit

 

[beautifulsoul]

I was once in a relationship where the guy was really worried about that. I spent the whole 3+ years of the relationship trying to convince him I was OK. Um....lame! What a waste of time. He ended up dumping me anyway. Now I'm with a guy who is totally cool with me, my health issues, and most of all loves me and will BE THERE. I don't need anyone dragging me down w. their crying/whining anymore I'm going to be around a long time, dammit

Good for you! I dated a guy who dumped me after about 2 weeks because I told him the average life span after transplant was 7 years. He had his mind completely set on my death in 7 years! I'm happy he dumped me because his stupid comments and sob story reasons for sadness/depression made no sense at all. I wanted to slap him. Here I am, sitting here 6 years post transplant with not a single thing wrong with me. I'll be living a long time dammit lol

 

[falloutboygurl16]

in all honesty most guys do not want to feel like they are the only form of financial responsibility no matter what so i do understand how he feels. I have been with my fiance for almost 3 years and we are getting married in 4 months. We do not have to worry about insurance because his insurance is good and i will be able to get on when we get married is that not the case for you?? I am not sure if that is how it normally works everywhere. He does understand that one day i will get sick and not be able to provide much and be on disability, but for now that is not a problem. I have been unemployed for 6 months after college and i have my degree in diagnostic medical sonography. Although my pfts are in the upper 50s-mid 60s (they can improve i just need to work on it) i still can work without problems. I have an outrageous amount of student loans to pay back so that is part of our life to come as well. He is really understanding and says we will be okay. A part of me worries about future financial situations as well as my physical limits. I always ask him if he really understands all there is to come and he does, he understands thoroughly what will happen. I understand that we all worry about life but no one else knows what is to come...do normal people give up on their spouses once they get sick with cancer that they did not have? Life is not all easy but you have to remember that if he really does love you he will stick with it because it is worth it. I am so greatfull to be marrying such an amazing guy.

 

[Iamqueenofeverything]

my ex thought my cf will cause us to be bankrupt every time i got sick. i have explained that insurance is affordable to everyone despite your job. he thought he had to be a full time in a high respected job to afford things which isn't true. i am and was able to work so it;s not like i expect him to work while i stayed home eating bon bons. he was a part time dj and part time at a tv station. he had a immature way of thinking and he didn't think through things and wasn't assertive about getting better paying jobs in his field because he was scared and had some major growing up to do. i do want my guy to be the leader in life and marriage and i want to be supportive and do whatever i can with my life with a husband. i need a guy to be strong enough to do want is best. i know in todays time a couple needs to have both people work just to make ends meet. i don't expect him to be the only form of finacial responsibility just like i dont want to be the only one cleaning, cooking etc...
i just feel like cfers are more mature in handling life and death and medical situations. immature people just don't get that they are dying every day or can walk into a deadly situation. they also don't realize that they can be the ones to get a disease and die before a cf person dies.

 

[beautifulsoul]

in all honesty most guys do not want to feel like they are the only form of financial responsibility no matter what so i do understand how he feels....We do not have to worry about insurance because his insurance is good and i will be able to get on when we get married is that not the case for you?? I am not sure if that is how it normally works everywhere...

I think we are all speaking of two issues in this topic 1) financial responsibility between two people 2) Health insurance coverage with marriage.

Tamara, I agree with the first part of your reply. Also, from what I understand (in my state anyways) your spouse can have a good job with not so good benefits. (or benefits do not apply until you've been married for at least a year) For example- my boyfriend has a good job (great job actually for his age) but the health benefits that he has aren't very good for whatever reason (I don't know why) and would not cover the cost of all my medicines, etc. if I did marry him. However, in the future if he gets a job with a different company that provides amazing health coverage THEN, I would consider getting married.

From what Kelli has said, it seems like they are more tangled in a financial situation between the two of them rather than insurance issues. Maybe both?

 

[MattNAdriannasMommy]

I have been married for almost 5 years and have 2 children (3 and 6, I carried both). My husband and I argue more about the housework not getting done and my "laziness" around the house more than anything else. I am in a CF slump right now, which means very low energy. Yes when we are mad at each other, my husband has reminded me how much of a financial drain I can be. I have been reminded how I don't put in nearly the work that he does in the family. I am in school online and am majoring in business in hopes that one day I can work from home.

I think the biggest problem is that he doesn't understand how bad I feel half the time. I say I can handle it, but its a lot, but he doesn't get how a load of laundry and having dinner on the table by like 430 is so much work. Im just looking for a bright side, but your not alone.

nikki_collier08@yahoo.com

 

[azdesertrat]

Man, this kinda hits close to home.
There are times I feel more worthless a gun with no bullets. I think its even worse for a man.
I was forced to medically retire on March 1st of '07. Now, disability is my only income. My Wife works 6 days a week, any where from 12-14 hours a day. I absolutely hate 'Retirement'.
My Wife tells me I should enjoy the time I have because I probably won't enjoy a retirement nearly as long as 'Normal' people. Those aren't the exact words she uses, but that is the meaning. I think not being able to contribute as much is a little rougher on a man than a woman with CF simply because of the traditional role of the male as the primary bread-winner. I've never carried such mental baggage but I'm also not too afraid to admit that yes; it does bother me to see her bustin' her ass while I sit home being worthless.
As of yet, I don't have any idea how to get rid of such ideas. I do get out & ride my ATV when my body allows such activity & that is something that can distract me enough to enjoy life a little. Problem is, with chronic pain, I'm not able to ride as much as I'd like to.
I don't have any good ideas how to alleviate the feelings of worthlessness; I guess I'm just letting off a little of my own frustrations out I guess.