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  1. #1
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    Unhappy I just want to cry

    Today is the first holiday that I have spent without my husband and the first holiday that I have spent being diagnosed. I don't know which is worse. I went to my mom and dad's today and what makes it so bad is that have been married 46 years. (not really a bad thing) just upsetting when some one leaves you after 17 years and just when you get diagnosed to. I should be thankful for my kids and my family, but I just want to cry today, My youngest son Harley passed away when he was 6 years oct 15 1998, missing him does not help either. I am also worried about the medication that the dr just put me on plaquenil I already have issues with my eyes and am worried that this med will make it worse.

    I wish there was something that could change all this for everyone, no one should have to go through any of this, I am just learning more and more about lupus, I wish that my husband would learn about it I feel if he knew more than he wouldn't have left like he did, but right now he is not acting right and everyone says that he will come back and help me. I don't know how to handle all this by myself, well I not really by my self my 21 year old son is here with me but it is still not the same.

    good night for now
    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

  2. #2
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    Leaann: I am so sorry that your Thanksgiving was a bummer. This was my first Thanksgiving without my dad and I missed him dearly. I never understand why people run from marriages but you are blessed beyond measure to have a son who is stepping up to the plate to help you. Keep your chin up and know there will be better days ahead.

    Melanie

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    Gizmo (11-25-2011)

  4. #3
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    Leaann, I am also sorry that you had a crummy holiday and that you have to deal with your diagnosis and a husband who is MIA. Maybe you can take Plaquinil off your plate of things to worry about, though. Most people take it without any problems, and it should start helping you feel better in a couple of months. Just make sure you get your eyes checked every 6 months. My eye doctor said people really don't need to worry about eye damage until they've been on Plaquinil for at least 5 years, and it isn't until you've been on it for 10 years that it become high risk. My understanding is that other eye problems don't really make you more prone to problems.

    I know it's hard, but when I start getting really down, I start thinking about the things I have to be thankful for. Is getting some counseling an option? Depression often goes hand in hand with lupus, and getting treated can make a world of difference. Not that you don't have plenty of depressing things happening, but the right combination of therapies can help make those things easier to cope with.

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    steve.b (11-25-2011)

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    I have a great doctor who is helping me through all of this, the crazy part of this is that my husband still comes around and does stuff for me ask about my meds and everything just as nothing never happen. He's been gone now about 3 week close to a month. I was diagnosed in august when I was diagnosed he stopped going to the doctor with me as he had went to every doctor up until then. Now he's talking about going back with me if i need him to. He also wants us to move closer to him, he says that way he can take better care of me, Heck I want to tell go jump. But every time I try I can't. 17 years with someone is along time, like tonight he said I had been with him longer than anyone had including his mom and dad.
    i don't know what to do anymore I stay confused and I am glad that my son is here because I don't know what I would do with out him. He is doing the best that he can since his step dad left.
    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

  7. #5
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    that's just the thing though we really don't know how to share each others pain. i mean i was just diagnosed with lupus myself but i want to tell you that everything will be alright but i don't even know what type of lupus i have. it sucks having lupus. as soon as i find out what kind i have i'll tell ya. i hear stress makes it hurt more. is this true? my nephew was 21 and just killed in a car accident i sure hope im not stressing over that because my bones hurt real bad does yours? please send me a private message cause i sometimes don't come back to where i post. thank you. oh yeah i hope you feel better sorry about your loss. if u need anything pm me.

  8. #6
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    Hi Leaann,
    Thinking about you and hoping that things will get better. I hope that you and your husband both make good choices that will be right for both of you.
    Gentle Hugs,
    Marla

  9. #7
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    Trustme,
    That is terrible news about your nephew - so young! Yes, stress can definitely affect your lupus. I hope that you can manage to keep calm through the next few days. Funerals are always stressful
    I'll be thinking about you.
    Hugs,
    Marla

  10. #8
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    Hi there -

    Please don't let the holidays get to you, especially being newly diagnosed. Stress and your state of mind have a lot to do with how you feel on a daily basis I have realized, I was diagnosed in July. Also, please do not worry about the plaquenil affecting your eye sight. Have you been to the eye doctor yet? When I went to the doctor they told me that it is extremely uncommon to have eye issues with this medication but that those that have problems are typically only affected by losing the ability to see colors well. I know that if it comes down to it I'd rather feel better than see colors!! Lupus is such a strange disease that affects people differently so just know that listening to your body and learning from how you feel each day and factoring what you did differently from the day before that things somewhat make more sense.

    Also- just a thought: I stopped eating meat all together a month ago and I have felt incredibly better than I have in a long time. Also, talk to your doctor about maybe just a one month taper of steroids. They have some negative side effects but I have found that my quality of life was being affected to the point that I would rather take the risks that steroids pose than feel like crap everyday. Also, my doctor put me on pristiq which is a non-habit forming anti-depressant and I am a lot happier and feel like I am able to tackle this terrible illness.

    Hope this helps

    Sarah

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