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Thread: I don't know what to do

  1. #1
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    Angry I don't know what to do

    I have been on here for some time but was diagnosed on 8/8/11 a day I will never forget. I have been fighting this for over 6 years and some symptoms I have fought all my life, at one point in life I was told I have crazy and made all this up, I understand some of you go through that. My husband and I have been together for over 16 years, he has been amazing, especially for all that we have been through.
    We moved in together only knowing each other 3 days, and 4 months into living together we lost our house to a fire and had which lno insurance. It took us 3 years to recover and then to get married. 5 months into our marriage We lost my 6 six year old son to drowning. I spent 8 years in severe depression because of it. Which lead me down a horrible road that caused me to almost lose my family,My husband and my other 2 children. NOW THIS. WHAT NEXT??

    There is no one that we can think of in my family that has lupus, but there is plenty of medical issues in my family. My mother is in Kidney failure, ( I feel that she has lupus but has never been tested). Right now she does not know that I have lupus, my dad and I feel that we do not need to tell her at this point but we do realize that she will need to be told. I also have a handicap brother and we decided that he would not be told. That was my decision I don't feel that he will understand. Both of my children are grown, one is 22 years and the other will be 21 in October. I worry that one day they will get the awful lupus as I see signs in them.

    Yesterday I went to my first Rheumy appointment it was very upsetting to me before I even went there, and now that I have gone and had to take over 13 different blood test I feel that it is driving me crazy. I can not work and have applied for disability and now I am awaiting a decision. So I am home driving my self crazy over this, My hair is falling out which is not helping. I can't talk to my mom about this and my best friend just lost her mother and her aunt this week, so I can't talk to her at this point. I have been stuck at home because they have kept me on high does of prednisone which I just finished up, and going outside well that's not possible because if I got with in 15 minutes I am sick and swelling up like a balloon. It is horrible.

    Right now I feel real bad for my husband because he has to work so much for us just for me to go to the doctor, we both lost our jobs a few years back and lost all our health insurance, so he is working more than normal, we he is not working he is spending all his time with me. I feel that all this is getting to him, he has his own health problems and not taking care of his self because he is talking care of me. I am trying to stay positive but it is hard. I am trying not to get depressed because I know that will not help me or my family. I have been down that road before and it is not a good one.

    I want to cry and scream and jump up and down and ask why me, why now, what did I do to deserve this, Haven't I been through enough, My family can't take no more.

    sorry this was a long post but I am trying to keep my self above water, and not go under.
    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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    ( ( ( H U G S ) ) )

    i can offer a shoulder.

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    Sometimes a little rant helps and you know we are here for you.
    Be thankful that you have a good husband, those are rare.
    Like Steve, I can offer you a shoulder.
    Be strong, we are here for you.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

  4. #4
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
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    I have no words that can fix your situation but sometimes getting it all out and seeing the words written makes us feel better. We are here for support and we will always be a shoulder to lean on. Things will get better soon
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Default thanks everyone

    I talked to my daughter yesterday, and that really helped, she has always been the one to get me out of a funk. It's funny how a kid no matter what age knows just what to say to there mom to make it better. I hadn't talk to her in a few days because she works so much guess she knew I needed her yesterday.

    Sometimes putting it in words and seeing really makes a difference. I think some of my problem is next month is the anniversary of my son's passing and to to just get diagnosed with lupus close to the same time has not helped. I think some times I feel bad because I can't talk to my mom about this the way I want causes a problem, I mean she knows some of this but we have not told her about the lupus yet. She has so many medical problems her self right now that we feel that it would make her condition worse. She just went into stage 4 kidney failure, and they are talking about operating on her again which is not good, so keeping it under wraps is a must right now.

    I am trying really hard to stay positive for my family but it is really hard. But I do have a wonderful family and some wonderful friends that are doing there best to keep me up.

    thanks
    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

  6. #6
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by leaann View Post
    I want to cry and scream and jump up and down and ask why me, why now, what did I do to deserve this, Haven't I been through enough, My family can't take no more.

    Hi Lea,

    I have an old punching bag out in the garage that I use when I need to scream, cry and yell "why me". I actually used a stencil and spray paint to paint "Lupus" on it. I work it over and curse it out like a sailor when I need to. It sounds weird, but it helps. I also have MS, so I think I'll get a small speed punching bag to represent it.

    I guess what I'm saying, is that it's OK to jump up and down, and ask why me, and why now. I have what most would consider to be the two worst autoimmune disorders there are, and I have asked many, many times, what I did to deserve this.

    It isn't fair, and none of us did anything to deserve this. But, things will not always be this hard. Just hang in there, and take it one appointment, one hour, one day at a time.

    It's OK to get angry. Do whatever you need to do to get through each day.

    Rob
    Last edited by rob; 09-08-2011 at 08:00 AM.

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    Cool I do know how you feel.

    Quote Originally Posted by leaann View Post
    I talked to my daughter yesterday, and that really helped, she has always been the one to get me out of a funk. It's funny how a kid no matter what age knows just what to say to there mom to make it better. I hadn't talk to her in a few days because she works so much guess she knew I needed her yesterday.

    Sometimes putting it in words and seeing really makes a difference. I think some of my problem is next month is the anniversary of my son's passing and to to just get diagnosed with lupus close to the same time has not helped. I think some times I feel bad because I can't talk to my mom about this the way I want causes a problem, I mean she knows some of this but we have not told her about the lupus yet. She has so many medical problems her self right now that we feel that it would make her condition worse. She just went into stage 4 kidney failure, and they are talking about operating on her again which is not good, so keeping it under wraps is a must right now.

    I am trying really hard to stay positive for my family but it is really hard. But I do have a wonderful family and some wonderful friends that are doing there best to keep me up.

    thanks
    but I remind myself everyday, any day above ground is a good

  8. #8
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by luv1only63 View Post
    but I remind myself everyday, any day above ground is a good
    It's always better to be on the green side of the grass.

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