Dear Lupus

deester · Growing Guppy Joined: 20 Sep 2008 Posts: 41

Hello dear Lupus, Sjogrens, Raynauds. Are you having a good time? I suppose you all know my news. I am not having a good time. No, been abed for 5 days. And you all know why to. Yes you do, you kept me from seeing my only child win her very first costume contest Saturday. Did you know that? You have kept me trapped in my house, in my dark bedroom. Did you really need to do all that? Haven't the years and years of pain, memory loss, swelling, hair loss, purple hands, splotchy skin, red rashes, swollen joints been enough? Have not the loss of friends who were to afraid of what they didn't understand and the inability to build a snowman with my child been enough for you? Has not the sacrafice of my babies that i couldn't carry been enough? What about my eyesight that goes in waves of blurrs and flashes out the corners of my eyes or the loss of my teeth? Still not enough for you? Tell me what will be enough for you then.

You beat me down but like an action hero I get back up every single time! I may be battered and bruised at the end but I am back up again! I may not get the key to the city or a medal of Valor but I get the smile from my child and the hug from husband and the flowers and calls from my fire department and that is worth more than any medal. I would get up from my coffin to see my daughter's smile and feel my husband's arms! Threaten me and keep me down for days if it makes you feel better! Just know dear diseases, that I will get back up again!

Funny how the doctor said that I was on the upswing then I find myself in to much pain, with fevers, and can't stay awake for a number of days. Was that your parting gift to me? Honestly, you could have just sent a postcard! I would have been content with that! So, in the future please, just a postcard. I don't need any more gifts like that. I have enough. Thanks for thinking of me though.

Sincerely,
DEE #Mad

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I just want to dance in the rain and stand in the sun...

sits_inthe_corner · Posted: Wed Oct 29, 2008 3:18 pm Post subject:

Awww gentle hugs to ya Dee,

Move over I'll be sliding in for a good flare myself soon. The past two weeks have been very stressful.

I just have to get through tomorrow then as soon as I start to relax my body will rear up and let me have it.

That's always the way with me. I handle stressful events just fine and then pay the price as soon as things get back to "normal"

Hope you start feeling better soon.
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Oh look ... a cookie

Saysusie · Posted: Thu Oct 30, 2008 6:59 pm Post subject:

Dee;
So sorry that Lupus insists upon making personal appearances with its own special little gifts! Like you, I've been holed up in my house and out of commission for quite a while.....I know it is no fun at all.
I'm at the point where I don't even want a post card, like...just forget that you even know me and just leave me alone!!! #evil

Oh well, I do hope that you start to feel better soon. In the meantime, I'm sending warm hugs and thoughts!!

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

hatlady · Tiger Joined: 16 Oct 2004 Posts: 864 Location: Illinois

Oh Dee, all I can send is gentle hugs. But if I find lupus's letter in your box....I'll risk the penalties of mail tampering and rip it to shreds for you.

~more gentle hugs~
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~"I find hope in the darkest of days, and focus in the brightest. I do not judge the universe." (Dalai Lama)

deester · Growing Guppy Joined: 20 Sep 2008 Posts: 41

When I first posted I wasn't sure what I wrote would be understood. This is what was in my head and the words just roled out and I kept talking to my diseases.

I am so glad to know I was understood and not alone. I feel bad. I haven't had much time or energy to read and post to others since I joined here and I feel a bit guilty. I have received such support and love and haven't had much to give in return. I will I promise. I just need a bit more time to get myself together.
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I just want to dance in the rain and stand in the sun...

sits_inthe_corner · Posted: Sun Nov 02, 2008 3:35 pm Post subject:

Hugs deester

We understand. Some days all I do is read posts. Hope you are feeling better soon.
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Oh look ... a cookie

Saysusie · Posted: Sun Nov 02, 2008 8:43 pm Post subject:

Of course we understand......we've all been there at one time or another, and we've all wondered if we even had enough left in us to form a complete sentence!

Hope that you feel better soon! Laughing

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

rob · Bear Joined: 12 Feb 2008 Posts: 673 Location: Maine

I understood right away what you meant Deester. Some days, I go off in a fit of anger and frustration yelling and cussing out loud at Lupus, like it was a person. It's like we are fighting a faceless enemy. It's OK Deester, we know what you mean.
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No More Turning Away, From the Weak and the Weary.
No More Turning Away From the Coldness Inside.
Just a World that We All Must Share.
It's Not Enough Just to Stand and Stare.
Is It Only A Dream That There'll be,
No More Turning Away?-D. Gilmour

mnjodette · Posted: Wed Nov 05, 2008 4:54 am Post subject:

Oh, we understand, Deester....believe me, we do. No explanations needed. I never get complacent. My buddy lupus (and all of his cohorts) can put in an appearance at any time. I hope today is a better day, Dee. Hey, maybe you can have your "mail" forwarded - to some bad guy that deserves those "gifts."

Hugs....
Jody
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"Always laugh when you can. It is cheap medicine." Lord Byron

Oluwa · Posted: Tue Nov 18, 2008 2:07 pm Post subject:

Hi Deester....

Wondering how you are? Still stumbling, feeling bad? Is there anything I can, we can do to comfort you?

We don't acknowledge guilt here...so worry not about not posting individually...reading your feelings about you, your Dear Hello Lupus...is comforting in the way, there is someone, you... who is like us..who gets what we feel. Who knows what it is like and is going through the same pain, anger, frustration...

Thinking of you...miss you Dee...

Hugs,
Love,
Oluwa

I was on vacation when you posted this, so I didn't read it till today when I went to look for you...