Don't know how much more I can take

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Dodd
Regular Member


Date Joined May 2011
Total Posts : 34
   Posted 7/18/2011 9:50 PM (GMT -6)   
I know how bad this sounds because I'm not the one sick and I know she feels worse than I. My wife went from perfectly healthy to disabled almost overnight. She has lupus and is on many drugs. It's only been four months but she just isn't getting better despite high doses of prednisone, methotrexate, plaquinol, and several other drugs. All day everyday all she does is complain of various problems. I feel horrible but i've got to the point where it goes in one ear and out the other. Obviously she can't work and the four months have ruined us financially as we were a duel income family split 50-50 and needed every penny. We filed bankruptcy and will also surrender the house. We have 3 kids 8,9, and 11. I have no idea what will happen to us. I'm really hating that I've lost literally everything but my kids. I can't imagine my marriage being like this forever. Only thing keeping me going are the kids otherwise I think I'd just like to lie down and never wake up.

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 42611
   Posted 7/19/2011 9:45 AM (GMT -6)   
Can she fie for disability? I would check into that. You might be eligable for some help from the Department of Social Services. I would check that out. You could get food stamps and other means of help. I hope that you don't lose your house. That would be terrible.

Know that you are in my thoughts and prayers. I would look into some financial help if I were you.

Keep us posted on how things are going.

Hugs, Karen
Moderator-Depression and fibromyalgia


fibromyalgia, Chronic fatigue, depression, allergies

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 7/19/2011 10:04 AM (GMT -6)   
I agree with getting by/Karen, file for disability, check into womens infant children program for help with food such as milk, cheese
and bread..ask for help from your local church, they might be able to get you on meals on wheels program look
into that...if you get denied by disability the first time then you get an attorney to push it thru for you
they usually will get money if you win, but ask and don't go for the tv ad lawyer's...
well wishes, and seek out counceling for yourself and your wife and do a google search on lupus to see, if they
have a local support group in your area...
keep us posted on how your doing...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 7/19/2011 10:15 AM (GMT -6)   
Also, the Lupus forum on here might be able to offer up better responses for finding
resouces for help...read to see or ask if they know of good help...just a thought...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Dodd
Regular Member


Date Joined May 2011
Total Posts : 34
   Posted 7/19/2011 5:43 PM (GMT -6)   
Thanks for the responses. She did file for disability. Funny thing is, if she actually got it, it would actually hurt us financially because we'd then have too much money! The bankruptcy would change from ch 7 to ch 13 but i wont even go into all that. She is almost certainly going to be denied this first time but the appeal (about two years from now) she would have a good chance says our lawyer. The house is for sure gone. Will be three years to be elgible for another loan. I've already decided to raid my 401k to get enough to buy a house on a land contract. I just can't move my kids into a rental. Only rentals I can find are in bad areas of town. The lupus people really only sympathize with the lupus person I think. If my anxiety doesn't go away I think I'm going to have to go on some meds.

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 42611
   Posted 7/19/2011 6:24 PM (GMT -6)   
Sounds like you are between a rock and a hardplace. That is no fun. But it sounds like you are handling things well. I know it isn't easy. But you are doing it.

I am glad that you are going to try to get another house on land contract. I hope that it all works out for you and your family. Keep us posted on how things are going and know that we are all here for you.

Have a wonderful day.

Hugs, Karen
Moderator-Depression and fibromyalgia


fibromyalgia, Chronic fatigue, depression, allergies

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 7/19/2011 8:56 PM (GMT -6)   
You can still try for the meals on wheels, from a church...ask at your local church...
Posts the question about disability in the Chronic Pain forum, someone there can help you with
more info, and can give you advise on to how to succeed in getting it...from what I know
there is an ssi disability and ssd...go and ask it in the cp forum....
Maybe try to find a support for care givers website...
well wishes to you
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 7/20/2011 6:29 PM (GMT -6)   
Go to your local library and check out the book
"A Husband, A Wife, & an Illness: Living life Beyond Chronic Illness"
By Dr. William July and Jamey Lacy July
it offer's up practical tips for both the caregiving spouse and the afflicted spouse
Hope this'll help
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Dodd
Regular Member


Date Joined May 2011
Total Posts : 34
   Posted 7/20/2011 7:12 PM (GMT -6)   
Thanks Chartreux. I think I might go check that book out. I just got home from work after a 12 hour day and she has stayed in bed all day because she feels so bad. My poor kids pretty much fend for themselves when I'm gone. I made dinner and now surfing the web a bit before I get the energy to clean up the kitchen. I'm so tired... physically and mentally. I can't believe just 4 months ago I was so happy and now I so wish I was a single guy only responsible for myself. I hate life but I think the worst hasn't even come yet. I just feel like laying down and crying. I don't want to be a caregiver the rest of my life but I think that is exactly what I've become. Caregiver, single dad, and full time worker.

Ashbird
New Member


Date Joined Feb 2008
Total Posts : 12
   Posted 7/21/2011 4:04 AM (GMT -6)   
I am so sorry for what youre going thru! I am als in Bankruptcy, but I started in chapter 13 and now Im changing it to chapter 7. Losing everything is harder than alot of people think...Ive done it several times and each time I feel Ive lost a piece of myself! After your wife gets her disability;and Im sure she will, she may be able to get a visiting nurse or aid to help with her care. Your kids are old enough to help you too so when you get home from work you can spend less time cleaning and more time with your family. I hope things get better soon!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16787
   Posted 7/21/2011 11:24 AM (GMT -6)   
Hi Dodd, Chart from the chronic pain forum asked me to post to you about the Social Security Disability on your wife. I am a little confused about your comment that she has got disability approved? Are you saying she filed and has already been told she was approved and will receive SSD every month? Or, did she file for Supplemental Security Income and is she receiving that? Under SSD you have to pay in so many quarters to be eligible for SSD, it comes out to like working 10 years straight. SSI on the other hand is for people that do not meet the earnings requirements or have never worked. It is much more stricter than SSD because they do count the husbands income and most people do not get SSI if the husband works and makes a decent wage.

Does she have any atty handling the SSD claim? If not, I would look for one locally that handles nothing but SSD claims. Stay away from the attys that do a little of this and a little of that, they are not going to be up to par on anything special at all. I do not recommend what we call the tv guide attys either, the ones on tv that do nothing but toot their own horn on how good they are, they are after quantity not quality files and its nothing but a numbers game to them, they have so many clients that they have no clue who their client is. I know this from working in the legal field as a paralegal for over 20 yrs.

I am so sorry your wife is having so many problems. Have you all thought perhaps maybe a second opinion may be something to consider since she is not getting any better? I know with Lupus its a matter of getting the medications adjusted to meet the individual. I don't know how long she has been on her medications, but if she is not getting better something needs to be done. Is her drs aware that all she is doing is laying bed, I don't think they would want a patient to become bedridden. if they don't know then you need to let them know what is going on. I am assuming that her care is being paid for by your health insurance is that right?

I have crohns disease and did Remicade infusions and one of the side effects of the Remicade is it can induce Lupus and this is what happened to me. I am now on Humira shots for crohns but have to stay on Placquenel because Humira does the same, it can induce Lupus.

I do think you should get yourself to the dr and explain what all is going on in your life and how it is affecting you. It is not affecting just you, it is also affecting your children. You need to be as healthy as possible to keep your family together. I was in your shoes a few years back when I became disabled and totally understand what you are saying and how you feel. I ended up not only having to be put on an antidepressant but I had to get some professional help in the form of counseling. I found a wonderful psychologist that really helped me learn how to cope and deal with my life that had been snatched away and turned upside down literally over night. You really do mourn your losses, your wife will do the same thing. You both probably could use some help to learn how to cope and deal with things. My heart goes out to both of you. Talk to your children as much as you can so they don't think mom is sick because of something they did. Children for whatever reason always think its something they have done when something drastic happens in the family.

If you get a chance and I do know how busy you are with all of this on your shoulders, but come over to chronic pain forum and look up the CP101 and read some of the info there on SSD. Also, SSD has a very good informative website that is user friendly to check things out there. Please keep us posted on how things are coming along.
Moderator Chronic Pain Forum

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 42611
   Posted 7/21/2011 12:52 PM (GMT -6)   
I believe he stated that if she went on SSD that it would harm them more than do good. But I hope he finds some resolution to this particular problem. Thanks for the wonderful advice straydog, it is very much appreciated.

Hugs, Karen
Moderator-Depression and fibromyalgia


fibromyalgia, Chronic fatigue, depression, allergies

Dodd
Regular Member


Date Joined May 2011
Total Posts : 34
   Posted 7/22/2011 3:57 AM (GMT -6)   
Thanks for all the advice.  I will have to go check out that disabillity info on the CP forum.  She has applied but not yet heard back on sher disability claim.  We did see a lawyer.  He said it doesn't matter how much I make (not all that much though) if she has worked enough herself (which she has).  She been to many doctors about this "Lupus" if that is what she has.  They all seemed pretty stumped but it seems clear as day to me.  Since they are treating as if she did have it I guess the label doesn't really matter.  Now I'm dealing with an issue with my 11 year old daughter and her so called "friends".  Aarghhh....

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16787
   Posted 7/22/2011 11:03 AM (GMT -6)   
Hi Dodd, that is correct about what the lawyer said for Social Security Disability. She should hear something around the 6 month mark of filing her claim. I was notified on the 6th month that I was being awarded benefits. Is the atty you all spoke with going to handle her claim if she gets denied on the first application?

Has your wife been seen by a rheumatologist for the Lupus, this is the kind of dr that people usually see for it. My gastro is the one that referred me to the rheumatologist as he felt pretty certain that was another problem to add to my mix. It can be daunting trying to dx's for auto-immune type diseases to say the least. Sometimes if there is not a clear cut dx in front of a dr he will try to treat based on the symptoms. Then there are other drs that will rely only on the outcome of tests and if those fail to show anything the dr says there is nothing there to treat.

By chance have you been with your wife to her drs appt? i realize this may be something not possible because you need to hang onto your job and cannot afford to be missing work. Are the drs increasing her dose of Placquenel? My rheummie starts everyone on the lowest dose and then titrates the dosage upwards. If she is in the position of a bunch drs pointing the finger and saying she has this or that and none of them are in agreement, maybe taking her to a teaching hospital would be something to consider. Those drs are on the cutting edge of any and all new treatments out there for many types of problems that our drs are not even aware of.

I do hope you can get some straight answers but most of all your wife needs to get medical treatment that will get her up and out of the bed. Laying in a bed all day is just not good, it is very hard on the body. The longer she lays in a bed, the harder it will be for her to get back up on her feet. I have to wonder if her drs are aware of this going on as that is the last place they want any of their patients unless there is no choice. Depression will put a person to bed too.

Do take care of yourself Dodd, you are as affected by this as she is.Keep everyone posted on how things are going. Come here and talk it really does help having someone to talk to.
Moderator Chronic Pain Forum
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, September 21, 2018 10:06 PM (GMT -6)
There are a total of 3,005,613 posts in 329,243 threads.
View Active Threads


Who's Online
This forum has 161786 registered members. Please welcome our newest member, Wildcat44444.
279 Guest(s), 4 Registered Member(s) are currently online.  Details
Wildcat44444, Kristin93, Healing98, noodlesnoodles