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Lupus and Marriage

Discussion in 'Living with lupus' started by Billy Bob, Feb 13, 2011.

  1. Billy Bob

    Billy Bob Bill

    Well lets talk about marriage and men with in particular:rolleyes: I have been fight lupus since July 2006 and in late February of 2007....the day the Bears lost the Super rather badly....I'm a Bear Fan:( I had a major blood clot in my left lung and almost died. I was in intensive care for nearly three weeks and off work for another three weeks. I was relatively new to dealing with lupus and honestly thought I could beat it comletely. My employer was great and people donated vacation time to me to keep money coming in. I went back to work sick as a dog and continued to work till I was laid off in November of 2009.

    As the major bread winner and bring in 70K a year I was too scared to claim SSD even though I was so sick I kept thinking it had to get better and I could do it till everything when to heck in the job market I had been thinking of claiming SSD the whole time but I was just soooo afraid of all the consequences:sad:. All kind of bills, credit cards, second mortage, the whole nine yards. Everything I was afraid of happened:wall:......bankrupty, used all my 401k trying to save our house, now behind and in foreclosure and also the housing market dropped like a rock and now we are way underwater.

    Basically up a creek without a paddle:mad: Then my wife says well why don't you just go back to work...your not as sick as you were.....I couldn't walk around the house, had all kinds of experimental treatments and infussions. Well we got into a really BIG argument and it is really disheartening when your own wife acts like she is jealous and mad that I'm not working and don't always remember or feel like doing more around the house:sad:

    We worked it out for the most part as far as our relationship but are still in limbo as to whether it makes since to try to keep the house or not and that depends on whether I get approved for my SSD on 2/23 and if I can get some kind of loan modification on the house that doesn't require us being way underwater:eek:. Well if all that is not enough to make you want to jump off a cliff then your brain dead.... No wonder I can't sleep at night.:sad: So lets talk about disasters:hehe:

    Trying too keep sane:)

  2. Billy Bob

    Billy Bob Bill

    Also I want everyone to know that I have the MOST hard working and caring wife I could ever ask for but yah know Im sitting at home sick and feeling crappy day after day, week after week, month after month and it's no wonder she dosn't get fed up, angery and even mad at times:sad: and I can't help it. It is SO terrible and sad and the bad thing is it could be worse:eek: So I hope I get everyboby thinking about it especially us guys because I know how terrible and worthless I feel. So I just wanted to put that out there too as I have a great wife and basically lupus stinks and there is not much you can do about it but do the best you can. 8):wink2:

  3. KarolH

    KarolH Registered

    (((((Billy Bob)))))

    Believe it or not women miss working too and feel less then productive when at home, day in, day out with no paycheck coming in.
    You loose your sense of self purpose and the lack of adult conversation can make you mad.
    Then of course there is the lack of the second pay check and nowadays some women are the bread winners in the family.
    Indeed while waiting to be approved for SSD the bills do back is going to happen.
    Put your faith in God and I will hold you in prayer that the 23rd yields some good news for you and your family.
  4. keebler

    keebler Moderator

    Hi Bill,

    You are right living with a chronic illness is the pits. Also it has taught me what is really important in life and stop and cherish moments that other people just pass them by.

    Our husbands / wives try to be understanding but you have to remember they are under stress just like us. Sometimes a slip of the tongue happens. We wish that it could be taken back, but sadly that isn't the case. :(

    Having money troubles is a huge factor in any marriage/family. Just the stress and worry makes our lupus rear its ugly even harder.
    Good luck on Feb. 23.:luck:
  5. Monica3

    Monica3 Registered


    I hear your frustrations and pain and know that things are just the pits for you right now.
    It is normal to go through ups and downs with our spouses. CHronic illnesses put a huge strain on relationships and life in general.
    I am really hoping that SSD comes through for you on Feb. 23. It would at least help a bit with the finances.

    Glad you have a found a place to vent! Hope you don't mind us ladies responding--there just aren't that many men on here.

  6. greenhaggis

    greenhaggis Registered

    :grhug:Bill, I'm glad you are here on this site and feel that you can let it all out...even though most of are the opposite sex :rolleyes:.

    You have certainly been through so much with your health and life :grhug:

    Before, I had my kids (just 12 years ago) my husband and I both earned and were equal in saleries - we had a life going what we choose to do and I was 'healthy'.

    Now, I have 4 kids and still a husband (they are all lovely, well most of the time :lol:), I have Lupus and we have one salary now and a very, very small house - that really does not fit our family - life can be a struggle and thats being polite:). Somehow we manage though :wink2: (behind the scene's I may:wall::yell: at myself :lol: just to let it all out).

    I will be keeping my finger crossed for the 23rd :fingers:
  7. cally

    cally Registered


    You, and the other "grown ups" for want of a better phrase really have it hard. I get stressed enough with financial worries and I only have rent to pay and no real commitments. I used to be able to work 30 hours a week and do full time university work and now...well I can't. The rent where I live is the second highest in the country and I can't move away until I finish university. So on some level I do understand. My boyfriend takes a lot of the strain. He works 6 days a week to keep the bills paid and food coming in but it does place a strain on a relationship which doesn't have the years of commitment behind it that many of the marriages on here do. I am lucky that I have no children yet and can hopefully get my disease under control so that I am in the best place to look after them. But it is still a difficult choice. Lupus is awful. But that is the hand we have been given and we have to play it the best we can. I can see that you love your wife a lot, she must struggle with the pressure too. Life can be so difficult for us all. Financial worries are one of the biggest stressors in life and so can trigger and exacerbate flares a lot. I know you will be able to get through this seem a very strong person who like all of us is trapped in a faulty body :)

    I will be thinking about you on the 23rd, and have my fingers and toes crossed the decision goes your way.

    Take care,

    Cally x
  8. Billy Bob

    Billy Bob Bill

    Hey Thanks to All of you for the kind word and I and my Wife could use all the prayers we can get:) One of the things I had and have such a problem with is it just never goes away. I thought I could beat lupus and if I just kept on doing what the doc's say it would go away. Well it hasn't with me at all. My kidney doc does say my kidneys are finally stable at least but I still feel horrible. Now I can't sleep and I'm getting headaches and migraines. I have horrible cramping or muscle spasums that had went away for months and now they are coming back. My hands, forearms, legs, upper arms and neck. I have those cramps when you yawn under your chin and even on my head it is so weird and no one know why. I hate that:mad: Really bad pain even with the morphine and oxycodone and they don't touch the headaches or migraines. Even after I get epedurals it only lasts that day and then I'm sore the next day from the shots....8) The worst though is the fatiuge and fog and just not feeling like doing anything.....oh I forgot about the nausia and the tumor that grew on my shoulder for no appeant reason which is really getting big but they say that's just fatty tissue...:worried: It just wears you out that all these thing just keep coming and adding on......and then all the pills:eek:hno: and as far as I can tell they don't do squat8) The only one I can tell works is the steroids(prednisone) and they don't want you to take them because of all the side affects....:mad::blink::? Seams I already got a lot of side affects eh?:lol::blink:: :wacko::lol:

    Oh I'm done with crying, what I wanted to say was I didn't want you girls to think I meant any disrespect as I know a lot of women that are the main bread winners for thier familys. I was hoping to talk to some guys and see if they had this crap as bad as I did and how thier wives have haddled it cause its tough not having another guy to talk to about this stuff and to also get them posting if they were out there. I did talk to Martin a few times but I think that's about it so far. Thanks for caring and I keep posting and putting in my two cents here and there!:wink2::rotfl:

  9. doris999

    doris999 Registered

    Hi Bill,
    Keep posting, it is always good to hear whatt it's like to live with lupus and all the other things that go with it, from a man's point of view.
    A lot of men would not even post on a forum, so high 5 to you.

    Sending you and your wife HUGS.
  10. pennylp

    pennylp Registered

    Hi Bob,
    I just read your post... I am so sorry for what has happened to you... Life can be so unfair at times...I really understand your pain, and I am not meaning just what you are going through with the lupus and all other health issues... I am talking about all the mental struggles you are going through...
    I just want to tell you a little about myself and husband... I have had health issues most of my life, had a great doctor that delt with symptoms and treated them, but it wasn't until ten years ago that I found out I had lupus... I too knew that day my life changed and it was New years eve... I just knew that something was drastically wrong... went to the doctors again treated symptoms, but it actually took till the following september before they diagnosed me with lupus and RA... I had my own business and continued to work, I would be so tired at the end of the day I would wonder if I would be able to get to the next day.. but with the support of my family and my lupus family here, I was able to keep going... beleive the support you get from other people that know exactly what you are going through in itself is a dose of medicine...and you dont have to be complaining to family members...For as much as they love you they really do not understand like, others who are going through what you are....
    About four years after being diagnosed with lupus, I started losing a lot of weight, being sick to my stomache... I went back to doctors thinking it was lupus playing its evil game on me once again... they found a tumor on one of my ovaries , that had to be removed.... I was happy it wasn't the lupus and that I would be able to start feeling better again... But I didn't I was actually worse... about five month after surgeries I was back into the doctors by this time I had lost almost eighty pounds in total... The doctor said to me how great I looked, as I was overweight before... I told him I wasn't trying to lose weight... I had some swolen lymph nodes behind my ears... So he sent me to a surgeon who removed some , again I thought it was lupus... but this time it wasn't.. I was diagnosed with Non hodgkins lymphoma... You could have kicked me in the gut... I started treatments almost emidiately... chemo.... this has been going on now for about seven years... with more treatments than I can count...
    I continued to work until a little over a year ago... My doctor told me I had to go on disability, ( she is the person I was working for)... I was lucky and they accepted my claim in less than three weeks...
    A little about my husband... Healthy all his life... worked as an electrician making good money...thinking we were going to alright... the plant he worked at closed and put him out of this time he is fifty six years old... so he thought well I will start my own contracting business...It was rough but we were getting by...beleive me not making the money we were making when he was working for someone else... so what I am saying we sunk everything we could into the business and had to hire someone to help him.... He got in with a general contractor did a few jobs for him... then he got this big job... well we got screwed royally... and we ended up having to declare bankrupsy... we lost our house... but me being who I am... thought well this is just stuff... I am still alive and we have each other , we will get by... He found a job as an electrician not far from home making half of what he used to make at the other factory, but again... we got by... he worked there for a year and got laid off...the stress of me not being well and him being the main bread winner and not haivng a job was to much for him and on mother's day he had a heart attack...I have never been so scared in my life... it took a long time to get back on his feet... It changed both out lives...
    We made a dicission that money is not everything... we have to count our blessings... and as long as we can live, with food in our bellies and a place to live, and with having a wonderful family and great amount of friends this is how we are going to live... Of course it takes money to live... so what we have decided to do is this... George is now taking a course at home through correspondance (small engine repair) and will work at his own pace... In our own back yard... we rent a house... so there are no taxes or repairs to worry about...
    I have started a small business also working at my own pace... in my own home also... we are both happier and there is less stress on both of us... this has been the bumpiest ride of our lives but we are ajusting... Maybe there is some course you can take at home that will make you feel better.. and when you are done you can work out of your home when you feel up to it... My heart goes out to you and your wife... and you both will be in my prayers...

    love Penny
  11. Billy Bob

    Billy Bob Bill

    Thank you Penny your my hero:hug: I'm on a roll I slept for two nights in a row though some of it was on the couch:hehe: You are obviously a very stong woman and I admire how well you dealt with all the things life has thrown at you. I know I too am lucky, I have a wonderful family and will always have somewhere to go if we have to. The real problem we face now is my approval for SSD. Once that is determined we have to decide where we are going to live. My wife has two dauthers from another marriage that live here in Florida. We have four grandsons:lol: They are great but Kerri's husband died of a heart attack about two years ago and we have been helping watch the boys while she works and we love them very much!! The really hard decision we will soon be facing is whether we will be able to stay in Florida or move back to where my folks live in Illinois. I already have a five arcre piece of ground there that has a well and septic tank on it that we used to have a trailer on years ago. Its out in the hicks on a hill beside my family farm, its a beautiful place.....but the boys are here:sad: and the house we have here is great and we both love it. If I am denied SSD its history for sure and if I am approved and we decide to keep it without some sort of loan modification we will be 50K underwater:scare:. We had to claim bankruptcy so we have limited options that I can see and I don't think they would do much to help but I am going to try once I find out if I get approve for SSD. Until then we are in limbo and my poor wife and I are justed stressed to the limit and she doesn't want to talk about leaving the house or moving to Illinois even though she knows that is the likely outcome. I don't think she wants to leave obviously and neither do I. It's just a mess right now:worried: that we will have to deal with. So I post here and it really helps me because it is soooo hard for her to understand sometimes:? Its (the hearing) getting closer by the day so we will see:fingers:

  12. greenhaggis

    greenhaggis Registered


    I'm so glad Penny posted, as she is someone I look-up to on this site, and proud to have as a cyber friend.
  13. Billy Bob

    Billy Bob Bill

    Thanks Lesley:) I need all the friends and people to talk to on here that I can get. Since I have been sick and at home I don't have any many friends. I worked construction out of town all the time all over the place and my friends were the guys I worked with. So I only have two good friend and one is in North Carolina and the other is a wild man working in Houston right now that I visit at his house when he is back for a weekend. I can't keep up with him hes I party animal kind of guy but fun to be with (with moderation on my part):lol: So I don't have many people to talk to about all the health problems and I try to give my wife a break on the complaining thing as much as possible as she knows anyway. She sees it every day :wink2::rolleyes:

  14. Smile Of Life

    Smile Of Life Duncan

    Hi Bill,
    I was lurking reading this, like man other men here. So perhaps I should write to remind the women we do exist!

    I haven't worked full time for a few years. I worked a 5 hour day last year for 6 months until the company closed down. But that was too much. I almost fell asleep on the motorway each day driving home, then would have an exhausted evening not interacting with my family.

    So in a way I'm glad not to be working as I can enjoy things without being constantly exhausted. But there's a big down side, like you talked about.

    Luckily I earned well for a few years so have savings to live off. My folks help out, too. My wife is also ill so cannot do too much.

    I feel awful about it. I was high on the career ladder and was still rising. Now to think about all the things I cannot provide for my wife and little child breaks my heart. In her little slips, my wife says I'm useless. True, but still hard to hear when you don't want to be in that situation and there's not a lot you can do about it.

    Rather than being down about my situation, luckily I am just numb. I have little goals to aim for and am happy with simple things, luckily. I used to aim high and achieve high. Thankfully I have adjusted to that and realise it's no more.

    My illness is far better than it was 3 years ago. So don't give up hope just yet. It's early days and can change over time. SOme cases in lupus burn themselves out in the long run. I'm hoping for that.

    There are ways around everything. You just have to find people who will help you find the solutions. They are out there. And so are we to give you support any time you type.

    Good luck and chin up.
  15. Billy Bob

    Billy Bob Bill

    Well it's very nice to meet you Duncan,:)

    I've had a lot of ups and downs. I been fighting this stuff since it started in July of 2006. It seams I do the best (feel the best) when I am on prednisone but they always want me off of it once I am doing better and then its slowly down hill, but they say the prednisone has bad side affects and can ruin you hip joints but my hips hurt already...:( I really feel that my life as I knew it is over and sometimes feel like I'm going to die....and sometimes wish I would8) when you don't even want to go outside and feel sooo crappy you can't get off the couch.:mad:

    I took one of my grandsons fishing before Christmas. We rowed a canoe down steam about 7 miles but at a lesurly rate and I threw up when we got to the end and was sick for two days. I was sick as a dog all through Christmas and have been getting worse since, now the cramping I get all over my body has come back and I have started getting bad headaches and horrible migraines. I also can't sleep, sometime up two days.....

    It pretty well stinks and I am trying to make the best of it. I mean what are ya gonna do:lol: I have my SSD hearing coming up on the 23rd and I'm sure the stress of that and my wife worring does not help:worried: Bankruptcy, foreclosure and feeling like crap makes it hard to "make the best of it" but I'm not in the hospital and its warming up and nice here in Florida. I get to see my rhumy tomorrow and kidney doc on the 22nd so maybe they can try something else and one of the girls on line suggested I ask about Provigil to help with my fatiuge

    I'm just venting Duncan I don't want to scare you off:lol: It is good to talk to a guy cause it does help even though the girls here are great. I didn't notice if you mentioned what type of lupus you have. You can vent to me anytime you want :lol::lol:

    Bill :rotfl::rotfl:
  16. Smile Of Life

    Smile Of Life Duncan

    Hey Bill,

    To answer your question, I have systemic. It started affecting my joints to the point where I couldn't move, then went for my heart a few times. I also have hip pain - from osteo arthritis, caused by the lupus according to my rheumatologist. I need new hips in a few years. I've had it since 13. So I know where your pain is coming from!

    I've not been in the position of facing foreclosure, so my morale-boosting comments about enjoy what you can must have come across as rather annoying. Sorry.

    I've found that unless you tie a doctor down to fixing something, they'll gloss over it. Make sure you tell your rheumy exactly what you are facing lupus-wise and make sure he's giving you a solution to every one before you leave his office. You shouldn't have to be going through the misery that you are when the doctors can help. There are drugs to help with most things if they actually prescribe them for you.

    Unless the sun affects you, I think you are living in the right State for life! Just don't move to the 6 months of grey wet and cold winter of England! I'm off to see the sun in Greece for 10 days this afternoon. My body can't wait!

    Good luck with the doctor.
  17. Billy Bob

    Billy Bob Bill

    Hey Duncan,

    Don't worry about what you said. It didn't bother me. I was cry'in/venting I have family I won't be on the street....just not in Fl and wife doesn't want to go to Illinois so it is stressful and cold....Saw my VA Nephrologist today....:lol: I had them backward in my thread:blush: I pretty well let him have it. Gave him the run down, told him I was having a really bad flare or something else was going on. Bloodwork he had ordered didn't show much at all:mad:. Told him I'm not taking hydroxychloroquine any more due to fears about my vision, he didn't think that was it but understood why, he decided since I was in sooo much pain and feeling sooo bad, to run MORE blood work so I was on my way to the lab in the lost :lol:...and all of a sudden he calls me on my cell and says come back, he had decided to do a brain MRI along with the additional bloodwork dna...what ever8) because of the headaches and migraines. I was up all night again....1hr of sleep maybe...:mad: So thats good about the additional testing. Asked him if he thought I had fibermialgia and he said first thing first and that the bloodwork would tell whether I was flaring or it was something else. Said I could check with VA Rhumy next Tuesday on bloodwork and we could go from there. Don't know when they will schedule the MRI but he called and asked for it stat. Anyway I know something is up as it's worse than it's been in a long time so we will see.

  18. So sorry you're in the pits, Bill. Having all those medical impediments makes it tougher to dig out!! :( Some of us know how tough that can be. Maybe you can get some of that Magical Pred to tide you over. I'm surprised at their reluctance to give it to you since it Could lift your mood and fatigue as well as the pain (depending on your particular reaction to same).

    The other pit is the Housing Market Debaucle. A lot of your friends and neighbors are downsizing and moving into rentals (based on the great numbers of unoccupied housing, some owned by investors). Don't know if that would suit you but you'd still be near the VA and the grandchildren. No one wants to lose ground but reality is what it is. :luck:
  19. Billy Bob

    Billy Bob Bill

    Thanks Limpin,

    We are going to do what we have to I guess but maybe it will all work out. It really depend on my hearing tomorrow..... wish me luck :)

  20. keebler

    keebler Moderator

    Good luck tomorrow, Bill. :luck:

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