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Thread: new member and frustrated.

  1. #1
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    Default new member and frustrated.

    Hi Everyone,

    I am new to the site. I am 27 years and have lupus, lyme, strep, bacterial infections and many other problems. I am very frustrated because I do not know what do about my husband. He is not very supportive, and just went to his first appointment (I've been going to the dr for 8 years). I am now fighting for ltd and ssd and he continues to add pressure to me saying that I need to find income and that we will not make it. It makes me sad and upset...worried...scared. It can also put me in a flare. The thing is I have been advised not to work at all because I am being investigated and ssd and ltd can take awhile.

    So I guess my questions are: What am I suppose to do while I wait for LTD and SSD? What can I do about my husband who isn't very supportive?

    I think I have the same problem a lot of people have "You don't look sick...u look fine"

    Thanks yall and take care!

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    Default

    hi jcg196,

    welcome to our family....you will find a lot of common ground with our members, and we all help each other face the daily trials that we face.

    so sorry to hear about your husband...hopefully he will come around and truly understand what is going on with your body.

    you will find sincere compassion and incredible knowledge here, and i am glad that you found us.
    Phyllis

    share a smile today

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    Smile

    Thank you!!!

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    Default

    JCG,

    First. let me just say that you'll find great support here, no matter what situation you're in.

    Secondly, as one of the few men on this forum, let me take a stab at giving you some guidance from a general male point of view. I'm not saying it's right -- but it MIGHT help you feel a little better about the tough situation you're in right now.

    First, your husband is, I would venture, scared. He doesn't want to lose you, he doesn't want you or your situation as a couple/family to change, and on and on. You probably can't do all the things you used to do, and that both frightens, angers and frustrates him.

    So what do you do? Well, you can try reading some books on how to communicate with your spouse -- the old classic "Men are from Mars, Women are from Venus," is a good place to start. For a more religio-philosophic view, try "When Bad Things Happen to Good People."

    Then try using some of the techniques you've learned to broach the subject with him. Gently. Take care not to sound like you are whining or criticizing. But do let him know how his lack of support is making you feel, and what the two of you might be able to do to make it better for BOTH of you. Over time, try to find out how he feels about your situation, and offer some solutions. And don't give up if he pulls away a little every once in a while. My wife - who has a lot of male tendencies - has done that to me at times, but she always snaps back. He will, too, as long as you don't 'chase' him when he needs to pull away.

    Whew. It's late, I'm rambling, and I'm probably past the point of value-add here. But keep trying, keep hanging in there, and when you need to vent, come here.

    brian

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    Thank you Brian for your email. It helps to talk to people about it and to know u are not alone. I will def read that book to gain better insite and try to have my patience with my husband. Take care!

  6. #6
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    Default

    JCG..Finances...there is a financial section inthe forum. Check it out there maybe money saving ideas there....prescriptions, insurance...

    It also has info about applying for disability and etc..check it out. The evaluation process and etc. Have you hired a lawyer for applying for SSDI? If not, do...they don't collect unless you do and there is a flat rate. I posted info in that forum too about it...

    You can explain the Spoon theory to him...or even print it out...http://www.butyoudontlooksick.com/na...poonTheory.pdf

    Perhaps counseling..marriage, communication and too, for those with illnesses.

    I don't know what your income is, or if you own a home, but there are many programs city and states offer...discounts on monthly phone, electricity, winter heating bills, weatherizing your home..property taxes....check on that. You may qualify.

    It is a start...hope it helps.

    Be well..keep well.
    Love,
    Oluwa
    I have Lupus. So *^#@! what.

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    Default

    Hi Oluwa,

    Thanks for the article it was very good. Yes I have a lawyer and I have to apply for SSDI, I only applied for long term disability and got denied.

    We just bought a new home in November. When I was working our family income was 100k, now it is cut in half.

    Thanks for all the tips and advice I really appreciate it!

    xoxoxo,

    neL

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    Welcome JCG,

    Glad that you have found us... there are many of us that can relate to your issue... I understand about not being able to work and worried about a new house... My huband and I bought our new house about 4 years ago and just this feb I had to stop working... I am waiting on disability myself....I however don't have a dignoses yet I am still in the waiting... But I know it is coming...

    Sorry to hear about your husband... I know how difficut it can be, I myself have had times with my husband...It can be very hard... Being sick changes your whole life and there can put a strain on any marrage...He has to be scared and worried... I know my husband is, and even sometimes he says the dumbest things about my illness...I know it may be hard but you must talk to him about how you feel...I know a few weeks ago I had to sit my husband down and we had to have a talk about (sex) it was very hard but I am glad that I did it... But I got alot of support here before I did which helped me...

    This is a wonderful place and all the people here seem to understand so well and help with all kinds of information... please take time to look around and read the post...

    If you need to vent about the hubby we understand many of us have vented about spouses, kids family, friends, ect...

    If you want someone to talk to just message me I am here for you and understand....

    take care
    Lea
    SLE Lupus diagnosed 8/8/11
    COPD,Raynauda's, IBS, Asthma, Sleep Apena, Amenia and Arthritis,Diabetes,Reflux TMJ, temporal arteritis
    Half dead, cripple and crazy but still above ground.
    Medication
    Novolog injections, Medrol injections, MTX injections, Dicyclomine, Plaqulin, Iron, Spreva inhaler, Advair inhaler, Albuteral inhaler, Fish Oil, Calcium, Diclofenac, Citalopram and doxcycline

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    Default lyme too

    Hi jcg - I felt like I was reading a post that I wrote! I have been battling lyme (and babesia) for 2 1/2 years (and many years trying to get diagnosed). I have always been very susceptible to terrible strep throat as well, even after getting my tonsils out. And I get many other infections easily. I recently found out I have Lupus as well. My husband attempts to be supportive when I am openly upset or mad but other than that he tends to act like there's no problem.

    Would love to talk to you more about your treatments, etc since we, unfortunately, have so many problems in common.

    Welcome to the board - I haven't been on here long but everyone is super nice and supportive!

    Ang

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    Hi jcg,
    I was just wondering how much your husband really knows about your disease. If he thinks you can work when you tell him you're too sick then he probably doesn't understand the disease very well. I would try educating him a little at a time. There are some great books around, but I would try downloading some quick facts information from this site and maybe the American Lupus Foundation site. The more you can teach him about your disease the mor he'll understand you. I hope this helps. Good luck.
    Birder

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