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Thread: So Tired, Need a Friend

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    Default So Tired, Need a Friend

    Hello,

    I am looking for folks who understand what this life is like. I am just too weary to wake up anymore. It never gets better, but if you have lupus too, you know. My arms feel too heavy to type, I am in pain and my stomache is upset.

    Info; 48, 3 children 5 grandchildren, hashimots thyroiditus, lupus sle, hereditary hemochromatosis. Married a man four years ago who has Aspergers Syndrome and we didn't know it. I live in Southern California in a little cabin on 5 acres and take care of my mother. I am an animal person, horse woman who has lost everything. No horse, just a dusty saddle and empty corral. I have no support from anyone, or anywhere. My doctors are idiots.

    Sorry, you all have your own burdens to bear and I have nothing to offer but my own pitiful misery. Why doesn't anyone in my world understand what this is like? If I am too much of a buzz kill I understand and will not stick around.

    Ayah

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    Hello - -

    Please do not think of yourself as a buzz kill. Each and every one of us here understands what it is like to deal with the challenges of lupus on a daily basis...from the physical feelings to the emotional ones. This is a true place of warmth and support.

    Know that you are not alone. I too am a former horsewoman who no longer rides...my dusty saddle also holds fond memories. You will find new ways to enjoy the animals and to bear the difficulties you face each day. Hopefully, your visits here will provide you with the strength and courage you need to face each day with your head held as high as your tired body can hold it. For me, that is sometimes flat on my back with a pillow behind it.

    :lol:

    Know that you are welcome.

    I wish you wellness,



    Jana
    Life is measured not by the breaths we take, but by the moments that take our breath away.

  3. #3
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Ayah,

    I'm Rob. I'm 40 and I was diagnosed with SLE in 04'. Your words read like a mirror image of my own. I have fatigue that's like a lead blanket thrown over me. I understand your loss of the things you love. I've also lost far too much. And Doctors, well I could not agree with you more. Good ones seem impossible to find. I went for a long time with absolutely no support from anyone too. And I thought it would never get better.

    I have Lupus, I have never ending flares, and some days I can't get out of bed. But, I'm getting things under control, and have discovered new friends and family members who do try to understand and be supportive. It's not perfect, but things are slowly getting better. I want you to know that things can get better for you too. I know everything seems hopeless right now, but that's only temporary. It doesn't have to stay that way.

    I know you feel miserable, but you are NOT pitiful. And I'd be willing to bet that you have plenty to offer, you just can't offer it today. I have nothing I can offer on my worst days either. But on my good days, I have alot to offer, as do you, and so many others here do as well. Somedays, a person can be a solid shoulder for others to lean on. Other days, that same person can be the one who needs that shoulder, and the support. Right now, it sounds like you need a shoulder to lean on.

    I want you to know that you are absolutely welcome here, and I really hope you will stick around. Please make yourself at home, and don't be afraid to talk about what you are going through. We will listen. I'm glad you are here.

    Rob

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    Welcome AyahsClan

    Glad you found us. It's upsetting to always have to base your schedule on "how you are feeling at the time".

    We all do it. For the most part it's no big deal. But it does get old and frustrating some times. Kinda sucks all the spontaniousness out of life.

    But you do learn to enjoy the good days when they come our way.

    This board is here to offer support, information and kindness...we all have our days when we need more than we give, and let me tell ya ... this is a very giving board.

    So welcome and feel free to vent, spew or just whine your face off. We all do.

    We will read your posts and we will offer a shoulder.

    Glad you found us
    Oh look ... a cookie

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    Welcome AyahsClan,
    If I could, I would give you a huge hug right now and let you know that are not alone. I have met some truly wonderful people here and I know that you will too.
    Welcome friend and I hope to talk to you more soon.
    Robyn
    live, love and laugh often.

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    Hi Ayah,
    Welcome to the forum. My name is Kathy and I will be 50 in December. I have two children that are now adults and on their own now. I have a beautiful grandson. I understand what it is like to lose everything. Lupus is a horrible illness big time. Please don't say that you are s buzz kill, because you aren't. It is sad that a lot of people can not understand this illness. It is sad, because most of the time we look perfectly healthy when we aren't and people just can not relate to us. There are not very many people that I can talk with about this illness, because they just don't get it. It took my husband several years before he realized this is a severe illness and now he is more understanding. I love comming here and reading the posts. I hope that you will keep posting as we do all care very much about you and what is happening with you.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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    Thank you all for the warm understanding welcome. You're right, I'm not always this bad and when this flare subsides a bit I will have something to offer. Until then I am going to read some and get to know you all.

    Thanks Again,

    Ayah

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Ayah,

    I'm glad you decided to stick around! I'll tell you what, you and I are in the same boat today. I'm in the middle of a flare from hell right now. No sleep, pretty much everything hurts. Grrrrrr. To add insult to injury, it was almost 70 and sunny here today. Won't see many more days like that until next year. But, my spirits are good, even if my body is not. Anyway, we're really informal here, and pretty laid back. Make yourself at home and feel free to jump into the conversation whenever you like.

    Rob

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi Ayah;
    You've been given some wonderful support from our members here. I can only ditto what has been said and reiterate that you are not a buzz kill in any way, shape, or form. We all understand what you are experiencing.
    I just wanted to add my "welcome" to those you've already received and to let you know that I am glad that you are here with us!

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    hey ayah
    first of all welcome!! you are nowhere near a buzz kill....in fact i truly think that the main reason we all visit this forum is to know that there are hundreds to thousands of people who understand how devestating at times this disease can be (*raises hand*...i can)
    I know when I was first diagnosed over this summer I asked the questions "why me?" "why now?" "ive always been so active and healthy how could this have happened?" "what have i done to deserve this?" The huge question in my mind was "will I go off to college in the fall?"
    but slowly<--keyword...things started getting better...and I began to realize that with a little faith and a good repertoire of friends that what seemed to be the unachievable could be achieved

    keep your head up and know that if you need anything even someone to vent to...I'll be there
    Kat

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