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Thread: I am a Symptom.

  1. #11
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    So, it appears that we are all hiding someone inside of ourselves who is, truly and honestly, who we are. We are mute, to our friends and family, about the constant pain because we feel as if we are dominating our conversations with moans and groans. We put on brave, smiling faces for our families and friends, while inside we are cursing at what feels like the slow, but inevitable, destruction of our bodies and our minds. We say to ourselves, "Who wants to hear about this all of the time?"

    I've found that this family, here, is filled with people who not only want to hear it, but who genuinely want to help. So, our screen names actually becomes our true personalities. Our screen names are how we identify how we TRULY feel, both emotionally and physically. This is where we tell the whole, undiluted truth about Lupus, and its cronies, and how they "peck us to death" (as Oluwa said).

    It breaks my heart that so many of us have to fight, day in and day out, just to have some quality of life - and even then, we are beat down by this disease!! It is a miracle that more of us are not literally insane. I think that it is a testament to our strength and character that, no matter how this disease batters us, we are still always here for one another and we give so willingly (with no thoughts of self) to help each other.

    As I said, it is sad that this is our lives...but it is our truth and I am in awe of each and every one of you for who you are and for what you do for each other.

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

  2. #12
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    Oh Oluwa,
    You are so magnificent with words and word pictures. Your words so describe how I feel. I was in tears (still am) this morning because just stirring jam on the stove hurt my arms so badly I had to pass on the job to others. It brought right to the forefront all the abilities that I no longer posess. Actually been on this island for awhile. at times I feel so self center because I cannot relate anymore with others about life because all I have is my pain and the one thing like you said, the one accomplishment of the day. So very insignificant.

    I hurt for you and for me and all of us.

    Kasey

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    Dear Saysusie...

    Your words written so beautifully to frame up such an ugly disease...

    Your words express exactly how I feel...inside and out and how I express myself or don't.

    Everyone, from the first introduction are giving of themselves..that first hi is saying I am like you too, you are not alone and the welcoming that follows is saying the same. Strong or in pain, we do the dance well together...helping each other because we know how the other feels.

    I echo your words, in awe with each and everyone and admiration of everyone's strength while in a constant battle with the disease.

    Happy Saturday...head hugs...squeeze.
    Love,
    Oluwa
    I have Lupus. So *^#@! what.

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    Gentle hugs to ya Kasey,

    I keep thinking of my mother, and all the things she did. Even when it must have been torture for her to do so.

    Sometimes I feel like such a whimp and a cry baby.

    Other times I understand why she kept pushing herself. What else are you going to do.

    I wish I had the chance to tell her how much I admire her strength. But at the time I didn't realize how much of her inner personal strenghth she had to call on in order to do the laundry, cook our meals, clean our home, buy our groceries.

    I do realize it now and I admire her more than words can express.
    Oh look ... a cookie

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    Hi Kasey...

    Head hugs. It is hard when simple tasks become a feat. A feat indeed...a feat for someone who knows no pain that comes with a disease could ever begin to understand.

    Sometimes even using metaphors to convey our message of our pain, still doesn't project the pain.

    Stirring jam to us is like brushing ones teeth with a uncast broken arm and hand...

    I know how we want to make food with love. It creates memories..but sometimes store jam is better. Better because we can spend more time smiling with the family instead of in pain, holding it in, crying because the once loved jam making becomes another chore.

    Massage your arm muscles, fold them on your lap and have your children toast some bread and spread the jam you made.

    Thank you for your kind words...

    Head hugs...
    Love,
    Oluwa
    I have Lupus. So *^#@! what.

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    Oluwa,
    I am so sorry you feel so badly. You have had nothing but kind and helpful words for me, from the first day I was on this site and inside I was scared and crying. I will throw down a strong rope to help pull you out of your hole so that you can sit in a comfy chair and watch the beautiful sun come up over the horizon. (or in my case here, watch to see if the rain is turning into snow yet)
    I still sit and watch people do things and think, it isn't fair that they can run and jump and I can't. Sometimes it takes all I have not to become that bitter and hateful person. Then I think, I have a whole site full of friends and commrades that are like me. They all understand why I don't want to go to the mall today, or why I ask for help carrying the laundry to the washer.
    I will gladly lend you an ear or a shoulder and let you vent away. Get it all out and make room for the happy feelings.
    Robyn
    live, love and laugh often.

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    Hi all, sorry so much pain going around. I liked the idea of relocating my kitchen. Spent my evening doing just that. I'm the type that has things in one place always. So it was a bit of a challange :? , but I learned to just move things and expect their new places . Today was good, went to mum-in-laws and she had free clothes given to her from a friend for my 2yr old. No stains, all so cean and cute. I was lucky, and lil miss is so happy . We topped it of by going out to eat, I'll worry about that bill later. I'm so sore now, but happy for the moment. It is so unfair to have to deal with despair and pain daily. We need a really long trench, to hide instead of fall into with despair. This place is whats needed and helping us all. Just imagine how and where we would be if we didn't have WHL. I don't want to even think of it for myself :shock: . May we all sleep well tonight.
    Cheryl

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    Thank you Robyn...head hugs..

    With all these words, love, care and concern from everyone.... I am up and out of the stupid hole. Just laying at the rim, in the grass a bit exhausted.

    My chest and back pain from Gerdie, then the rash returning after the steroids, seemed like there was no relief in sight, no end. It just snared me in like a booby trap. My mind wandered into the what ifs. Then into the pity party, where I am the guest of honor...and then from there it took off in to griefing my life.

    My mind was reeling but now the paced has slowed considerably. Maybe my IT 'norm' is around the corner. Funny how the IT norm has become my norm. Who would have thought I would miss it.

    Today I want to feel like I did six weeks ago and six weeks ago I wanted to feel like I did last year. And last year I wanted to feel like I did four years ago. Always changing, adapting...acclimating to the disease...

    Enjoy the night, everyone...thank you very much for being my friends, my IT family..for being here for me, for all us....
    Head hugs...
    Love,
    Oluwa
    I have Lupus. So *^#@! what.

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    Glad to see you doing better Oluwa, yeah :BIG: .


    We all fall into that hole from time to time, we're only human. Its natural, another part of the norm I guess. Everyone falls into despair, even healthy people. That's something I've come to learn and except. Even a person as sweet and helpful as you needs to complain as well. Kind of theraputic in a way, at least it seems so to me. May tomorrow bring a smile to your face and heart. Night, and gentle hugs.
    Cheryl

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    Hi CV...

    Your rearranged kitchen will bring a great amount of relief. You will probably spin to the left, then to the right and ah, there it goes, there it is. How did breakfast go this morning?

    Have a great day..
    Love,
    Oluwa
    I have Lupus. So *^#@! what.

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