So sick of being sick :-(

Leesa65 · Posted: Thu Jun 01, 2006 5:46 pm Post subject: So sick of being sick :-(

hi, i am new to this site, so..hi everyone..i am going to VENT....i have SLE since april of 2004..but really since 1995, they couldn't dx me then...apparently it/i? went into remission all those years, and then one day i awoke with a facial rash and knew all too well what it was....days later was finally told that i had lupus..isn't it just GRAND? i have not gone into remission since, i have always been on plaquinel and was down to only 3 mg of prednisone..when 6 months ago, i got the worst flare ever, saw the ugleeeeeeeee rash coming back and the malise and knew again, here comes another attack...i'm in dire need of a total hip replacement but they have put it off/cancelled it 5 times, due to the higher dosages of steroids, it's un-safe..risk infection "too high"..so, i'm in constant agonizing pain 24/7 for over 2 years...finally, the blood work comes back and it's great news, all looks good..im on my way to recovery...then BAMMMMM, i start feeling tired and seeing my eyes grow weary and closing and zero energy, with new bumps/rash? behind my ears and in my hair..my doc brings me in ASAP and sure enuf, major flare, blood tests were GREAT a mere 4 weeks ago, now sed-rate sky-rocketed, c-reactive protein ridiculous....now another surgery cancellation..up'ed the steroids, up'ed the methotrexate and now on oxycontin..ughhhhhhhh..i swear, does this ever end? has anyone been on this pain med? i am in so much pain allllllll the time, i don't think i can take another day of this sometimes....what happened to my life..i am young..this sucks ...ok, i guess i'm done..
THANKS SO MUCH FOR VIEWING MY POST Crying or Very sad

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-LH

Leesa65 · Posted: Fri Jun 02, 2006 6:28 am Post subject: sick of being sick: part II

woke up this morning, and actually feeling better since they up'd the steroids....and started the new pain meds..yahoooooooooooo..HAPPY FRIDAY EVERYONE!!!!!!!!!...god, i have to tell ya, I am in a much better space than I was yesterday when i wrote.....thanks for being here... Very Happy

_________________
-LH

Ariel · Posted: Fri Jun 02, 2006 11:19 am Post subject:

*hugs*

I'm glad you feel better today! I've been having a rough patch myself and it does REALLY help to vent sometimes.

This is a safe place to do that with loads of positive vibes from everyone.

Sometimes I can't even post because of pain or depression or whatever but can still read other's posts and it helps.

Saysusie · Posted: Fri Jun 02, 2006 4:39 pm Post subject:

Leesa;
My heart goes out to you. I can feel your frustration and I can only empathize with your pain. A pain that almost all of us knows all too well. One of the most insidious aspects of Lupus is the relapse/remission syndrome or the fact that our flares are so unpredictable. One thing seems to be constant, weather we are in a flare, out of a flare, in remission or in relapse...WE ALWAYS SEEM TO HAVE SOME PAIN SOMEWHERE...ALL OF THE TIME!
I have, supposedly, been in remission for years now. However, as I write this, I am in pain and am lying in my bed trying to type on my lap top. Everything seems to hurt today, I have no energy and I just feel sick.
So, the mantra "Sick and tired of being sick and tired" is one that we all can identify with and we all have felt.
You need never worry about ranting here..there is no such thing on this forum. You need to talk about how you feel and we are here to listen and to help and give you support and comfort, if we can.
I truly hope that your doctors are at least able to get your symptoms under control long enough for you to have your surgery. Until then, you are truly in my thoughts and prayers.
Peace and Blessings
Saysusie

Leesa65 · Posted: Sat Jun 03, 2006 8:15 am Post subject: response

Thanks you guys, i really appreciate you writing back..made me feel even better todya, although my hip pain is KILLING me...i understand we are all going through something together than no one really seems to understand...at least you all do..thanks so very much....Ariel & Susie...
_________________
-LH

Saysusie · Posted: Mon Jun 05, 2006 1:42 pm Post subject:

You are welcome Leesa..we are here to help in any way that we can. I hope you are feeling better today
Laughing

Saysusie

Leesa65 · Posted: Wed Jun 07, 2006 1:30 pm Post subject: thanks

thanks for your emails..i hope you are feeling better today as well...
i'm off to a docs appt, and will write more when i return...nice talking with you...
_________________
-LH

Leesa65 · Posted: Fri Jun 09, 2006 10:39 am Post subject: HAPPY FRIDAY

happy friday everyone....i am in the worst flare, and they up'ed my steroids....AGAIN...hopefully this will work..the pain meds are making me sick...keeping my chins up though..
just wanted to pop in to say hi to everyone and hope you are all feeling well..
ps, does anyone know where i can get some LUPUS t-shirts? stuff that says Lupus on it, ya know?
long sleeve tshirts, hats..stuff of that sort...greatly appreciated..take care of yourselves and enjoy the weekend..
Cool

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-LH

Saysusie · Posted: Wed Jun 14, 2006 12:02 am Post subject:

Hi Leesa;
I'm sorry that you are still in a flare. I seem to be getting on top of my flare. Istill have sore muscles and joint pain, but they are a bit milder.

Here are a couple of sites I found for Lupus merchandise:

www.lupus.org/merchant

www.lupus.org/store

Peace and Blessings
Saysusie

Leesa65 · Posted: Wed Jun 14, 2006 7:25 am Post subject: merchandise

sorry you are not feeling well...my days have been so up & down as of late..i dont know if its seeing the dentist too much with all the novacaine plus the oxicontin plus the lortab plus the chemo..the docs dont know, meanwhile im sick as a dog every sinngle day now..HELPPPPPPPPPPPPP...

hey,, thanks for the personal emails and thanks for the websites to buy stuff..ive been looking for stuff..i am looking for someone who is an xlarge, i won a great tshirt on ebay..it has the NY Jets logo on the front an f it states something about the Meadowlands, NJ (which is where I am from) thats why i HADDDDDDDDDD to win that shirt and it supports Lupus on the back but even after washing, its still too large, I would like to trade it for a smaller tshirt with someone or a hat or a mug or something, ya know? let me know if you know anyone..its a great tshirt..i could even send a pic and measurements..

off to 3 diff. doc appts. today..take care & many thanks, hang in there and feel better..
_________________
-LH

Leesa65 · Posted: Wed Jun 14, 2006 7:26 am Post subject: link wont open

www.lupus.org/merchant

this link does not open ;-(
_________________
-LH

Saysusie · Posted: Thu Jun 15, 2006 2:09 pm Post subject:

Sorry

Have you tried eBay? I'm told that there is a lot of Lupus merhcandise available there.

Saysusie

Leesa65 · Posted: Thu Jun 15, 2006 9:37 pm Post subject: ebay

but i cannot find any shirts snd such Sad

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-LH

SoleSinger · Posted: Thu Jun 15, 2006 10:03 pm Post subject:

I KNOW WHERE YOU CAN GET SOME!!!!

http://www.cafepress.com/bydls/1508673

http://www.cafepress.com/bydls/632021

http://www.cafepress.com/bydls/753559

http://www.cafepress.com/bydls/753758

Hope this helps!!
_________________
"All sounds are potentially dangerous.
All sounds are potentially medicinal.
All sounds are beautiful." ~Yoko Ono

Leesa65 · Posted: Fri Jun 16, 2006 6:12 am Post subject: shirts

awesome!!!!!!!!!!!!
thank you sooooooooo very much...
_________________
-LH