.
THe Results are in
Sat, 12/06/2008 - 1:27pm
:( Systemic Lupus Erythematosis, or SLE, or LUPUS.............Just got confirmation that it's the major culprit. Apparently I have had this off and on for some years but in a milder forms. I also have Human Parvo Virus Number 18 Gram Negative. Charity hospital really dropped the ball on the E Coli diagnosis. Seems I never had it at all.
Lupus has a five year survival rate in 90% of patients, 10 years in 80% and anyone sustaining the 10 year rate are really fortunate. Now, listen to old Thorn a moment all of ya's........I intend to survive to be very old........God can do this for me.
Lupus attacks the body as though it were infections. A cold can become Lupus Pneumonitis and kill you....Ain't happenin!
A simple cut can become infected and Lupus can treat it as a bad disease and over fight it . It kills my immune system. Steriods are the course of action and strong pain killers because Lupus hurts 24 hours a day. The type of Lupus that I have is the most aggressive, but I will be under the care of a Rheumatologist forever now. First remission will be heavenly, next attack can be unrelentless. it's all a matter of my body and it's will and ability to recognize infection as simply infection and not some form of disease that cause the kidneys, heart, liver, and brain to shut down.
THere are a large number of suicides with lupus in end stages and because of that I have been put on EFFEXOR XR and Klonazapam daily, along with moderate pain killers. My focus right now is to get gov't aid. SSRI, etc. I found out that some of the tools that will be needed during attacks will be provided to me under certain circumstances free of charge. Effexor has agreed to help me cut the cost of it's monthly fee....EXPENSIVE.........
You guys know me...Where there is a will there is a way..............I will walk with God daily and take it one step at a time but never, ever, will I give in to this!!!!!!!!!
Love ya UGS.............
THORNATUDE SHALL PREVAIL!:)
__________________
UOF BADGE #4 
OFFICIAL POST HO #1 \\m//
OFFICIAL POST HO #1 \\m//
Sat, 12/06/2008 - 2:54pm
#2
damn bekah.
keep that attitude and you will survive!
did the stickers arrive yet?
Sat, 12/06/2008 - 2:59pm
#3
Thorn,
My grandmother had Lupus for my entire life. She died of old age two years ago. When I was growing up a good friend of mines mother had Lupus, she was still kicking a few years back. You've got Thornatude and the Lord on your side. Keeping you in my prayers.
H
Sat, 12/06/2008 - 3:53pm
#4
Thorn, sorry I haven't weighed in on this earlier. I can tend to get kinda emotional about this stuff.
Even though I am not religious, you have been in my thoughts and heart since I read that you weren't well. Your faith, even though i may believe different, I have a deep respect for and I admire how much strength you have both with god and yourself. You are not only a amazing member of the board, you have changed the way I take life. The strength and work that you put into everything is just amazing and I hope to put myself out in the strength and attitude you have. You never ever quit, and I am sure you wont now.
You will get through this, and whenever you need people we will be here.
Sat, 12/06/2008 - 6:35pm
#5
THORNATUUUUUUUUUDE!!!!!!!!!!!!!!!!:p:p
Sat, 12/06/2008 - 7:02pm
#6
Thanks for the kind support everyone! Means so much to me to have you all as my family..........:)
The way this has been weighed out in time, is that I have had a mild form of Lupus since the late seventies, with long, long remissions. The more aggressive form of Systemic type of lupus has come about in the past ten years. THis last full diagnostic workup leaves me at the 90% 5 year rate due to my age and the progression of organs involved now. My husbands grandmother had it for about 10 years and died from pneumonitis about 10 years ago. She was 60. I look forward to the age of 70 at least. I am not going out before then! :)
There is a lot of love and living for me in the next 20 years and I look forward to each day of it! My hands are feeling wonderful with the new meds so I am about to dive full on into my ugly stick and enjoy that part of me once more! YAY!
JACKIE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! tHANKYOU THANKYOU FOR ALL THE COOL UBP AND BASS STICKERS...................BUT MOST OF ALL FOR LUCAS.............WHAT AN ANGEL TO LIGHT MY DAYS AND NIGHTS!!!!!!!!!!!!!!!!
My favorite is the washtub................tomorrow I'm going to get sigoth to go get me a triple frame so I can put Lucas on my computer...........What a sweet gift!!!!!!!!!
__________________
UOF BADGE #4 OFFICIAL POST HO #1 \\m//
OFFICIAL POST HO #1 \\m//
Sat, 12/06/2008 - 7:36pm
#7
.jpg "Grin's picture")
Thorn...you are a inspiration to everyone on this board, i know...and i believe that if there is anyone that can kick the bejesus out of this disease it is YOU;).
i thank God that you finally found out what it is you have...and that the meds are starting to work.
i love you attitude...hmmm...i mean THORNATTITUDE:D
it's easy for us to praise God when things are going good...but you are not even flinching when things are bad......that does not go unnoticed.
i look up to you big sis:)
Sat, 12/06/2008 - 8:03pm
#8
Thorn;160729 wrote:
JACKIE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! tHANKYOU THANKYOU FOR ALL THE COOL UBP AND BASS STICKERS...................BUT MOST OF ALL FOR LUCAS.............WHAT AN ANGEL TO LIGHT MY DAYS AND NIGHTS!!!!!!!!!!!!!!!!
My favorite is the washtub................tomorrow I'm going to get sigoth to go get me a triple frame so I can put Lucas on my computer...........What a sweet gift!!!!!!!!!
i'm glad i (we) could help brighten your day. yeah the washtub is one of my favorites too. send me you email addy and i can send you lotsa digital pix if'n you want. ;)
don't forget to show everyone your pimped out walker!
Sat, 12/06/2008 - 8:09pm
#9
Grin;160731 wrote:
Thorn...you are a inspiration to everyone on this board, i know...and i believe that if there is anyone that can kick the bejesus out of this disease it is YOU;).
+1 to that - I also have taken inspiration from you to help me fight my own personal demons, and you have been such a positive influence.
It's only right and fair that we respond with the same.
There's an old saying - Physician, heal thyself!. Translated, this means that within us all we have the ability to use the mind to heal the body. There are far too many cases where this has happened to ignore the fact. Reversals of terminal illness, accidents etc.
If anyone has the ability to use this and take charge, it's you, Bekah. So do it. Personally I won't be surprised if in a while you report here that you've kicked this things sorry ass!
Sat, 12/06/2008 - 8:35pm
#10
Thorny, what an attitude your displaying, it will carry you far. I wish and hope for you the best, your in my thoughts and prayers.:):)
Sat, 12/06/2008 - 9:22pm
#11
Hey Bekah,
Although the news isn't great, at least you know now! I will continue praying for you and your sigoth. You have an amazing attitude and faith that I envy. You have inspired me over the past month and I think about you and pray for you regularly! I hope to meet you in person someday (whether we have that joust or not :D ). Keep pressin on and keep that outstanding faith in The Great Physician to cure you. You rock!
Rock oN!
Jordan
Sun, 12/07/2008 - 5:11am
#12
Thorn;160701 wrote:
:( Systemic Lupus Erythematosis, or SLE, or LUPUS.............Just got confirmation that it's the major culprit. Apparently I have had this off and on for some years but in a milder forms. I also have Human Parvo Virus Number 18 Gram Negative. Charity hospital really dropped the ball on the E Coli diagnosis. Seems I never had it at all.
Lupus has a five year survival rate in 90% of patients, 10 years in 80% and anyone sustaining the 10 year rate are really fortunate. Now, listen to old Thorn a moment all of ya's........I intend to survive to be very old........God can do this for me.
Lupus attacks the body as though it were infections. A cold can become Lupus Pneumonitis and kill you....Ain't happenin!
A simple cut can become infected and Lupus can treat it as a bad disease and over fight it . It kills my immune system. Steriods are the course of action and strong pain killers because Lupus hurts 24 hours a day. The type of Lupus that I have is the most aggressive, but I will be under the care of a Rheumatologist forever now. First remission will be heavenly, next attack can be unrelentless. it's all a matter of my body and it's will and ability to recognize infection as simply infection and not some form of disease that cause the kidneys, heart, liver, and brain to shut down.
That's some scary s**t:eek:
But if anyone can kick its @$$, it's you.
Take care, sister.
We're here if you need anything.
Sun, 12/07/2008 - 5:29am
#13
Stay strong sister..you're an inspiration and we're all here for you..you'll get through this!
-Dave
Sun, 12/07/2008 - 8:35am
#14
Hey Thorn,
Your a strong girl, you will fight......
To know is some relief. Now to fight it....
Our prayers and love are still going up for you and around you.....
Sun, 12/07/2008 - 10:50am
#15
Thorn, I was just thinking about you and saw this thread.
Thank God you've found out what the problem is.
Now you can throw all your THORNATUDE at it.
You will get through this.
Serious prayer goin' out to ya.
LowDown:cool:
Mon, 12/08/2008 - 9:08am
#16
You got this big sister!
No prob for Thorn! :)
Mon, 12/08/2008 - 11:26am
#17
Wow. All I can really say is that the news sucks. But, as usual, your attitude ROCKS!!
Thanks for the update!:D
Tue, 12/09/2008 - 8:19am
#18
OKAY.......................this right here is what is going to impede THORNATUDE somewhat...........................
First of all, have any of you seen an aggressive attack of Lupus on anyone else? Rigidity, severe pain, unsteady gait, localized pressure on all surfaces of the skin, confusion, etc.......................not cute. I'm home alone last night feeling rotten but okay. I keep getting these attacks of not breathing...........So, do as the doc says and take more danged DOPE. I do this. I lay back down, thirty minutes later I am in mortal danger. I cannot literally breathe!
Ken happens to call me from work and I am all out of breath and can't even cry about it. heaving, freakin out. So he rushes home, I am so weak cannot move from the recliner. He gets an ambulance, they get there my heart rate is skkkkkkkkkkkkkky high, but bp is normal. Stuck oxygen on me and I began to feel a little better. take some tests come back.........um, it's just the Lupus hun.......Nothing can be done.........here's about a cajillion amps of Ativan and quadrijillion of morphine and you'll be on your way bless your heart I know you are in so much pain!
So, in other words, THIS IS YOUR LIFE GET USED TO IT:...............Ah well, still won't let it kill my spirit. Just dampened it a tad! Scarey crap happening.........
Anyone go to therapy for diesase they have? Does it really work or is it blah blah blah?
__________________
UOF BADGE #4 OFFICIAL POST HO #1 \\m//
OFFICIAL POST HO #1 \\m//
Tue, 12/09/2008 - 9:56am
#19
man... hang in there thorn. your body will bounce back, it's just fighting for you right now.... more prayers....
Tue, 12/09/2008 - 10:58am
#20
Was just reading up on it...
I've heard of it before, but never knew much about it. I guess it's more common than I thought...
You will do well, I know it. God Bless.
Tue, 12/09/2008 - 11:08am
#21
Breathing trouble?
That's way too scary of a feeling. My heart goes out to you Thorn.
I don't even know what to say. I'm at a loss for any words about this.
Tue, 12/09/2008 - 12:08pm
#22
Still praying.
jb
shit....
good attitude, like always. Do as much reading on the topic as possible and educate yourself... don't rely on the docs, rely on your self and your attitude.
Lupus aint shit compared to Thornatude......
here's to the wind that breezes, through the treeses, up girls skirts and between their kneeses, to that little spot that teases and pleases and gives men diseases oh Jesus (said with a drunken Scottish accent)