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I am a lupus survivor

Posted by on Apr. 14, 2007 at 6:18 PM
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Hello everyone. I am here because I have lupus as well as fibromyalgia and now anxiety and depression.  I applied for ssi and was approved this month.  I waited six long months and it was a hard long wait but at least I didnt have to appeal and wait for years like some people wait.   I have read some of your stories and can offer what I know to people I am well managed by about 15 different meds right now.. which includes a pain management regimine of a fentanyl patch and lortabs codeine basically.  I am unable to go less than 10 mgs of prednisone since diagnosis in July of 06.. I am puffy.. I am bloated and I have acne from the steroids.. I know how hard it is and unpredictable it can be.. I would love to talk personally to anyone who has questions or just wants to vent. I am a positive person and I know its a tough road but it seems much easier now that Im getting ssi and I feel like less of a burden to my family now. 
Also please check out this site dedicated to lupus survivors and the research that is being done to help us.. Its a friend of mine's page on myspace her name is Kendra and its a support site with some excellent reference material for anyone who is interested.  

 http://www.myspace.com/cure4lupus


Crystal
by on Apr. 14, 2007 at 6:18 PM
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Replies (1-8):
Starry_Morning
by Member on Apr. 14, 2007 at 7:49 PM
I'm glad this group was started for us.  Please continue posting your experiences.  I'm trying to learn all I can about this disease. 
stormnjen
by New Member on Apr. 18, 2007 at 7:37 PM

OMG you sounds just like me!!!!  I also have Neg ANA Lupus and Fibro, along w/ other bleeding problems and autoimmune thyroid problems. I am on Fentnyl patch, Pecocet, and about 15 other meds to contol other things.   The steroids  are constant and can never get beyond 10mg of Prednisione either!  I am currently on 60mg. I am very bloated, puffy and have gained 50lbs!!! I habe insulin dependant diabetes, glaucoma, fatty liver disease, acne and terrible sweats from the steroids. I feel like I am the only one out here like that. I cannot get into remission for anything. I have been on Imuran, Plaquenil and Cellcept. The next step is Rituxin. I just started the Cellcept about 1 month ago, after another hospitalization. I end up in the hosp. every 6  months w/ flare ups. My flare ups don't just include pain, I get Pericarditis, which is fluid build up around my heart, and I get short of breath and my heart races and has to be slowed down w/ meds. I feel depressed at times I cannot work anymore. I am a nurse and feel totaly nonexistant at times. I've applied for SSI was originally denied and am in the middle of an appeal. I hope it is approved this time, especially since I've been hospt twice since my original application. But who knows....
Well, thanks for posting your story, otherwise I would still feel like I am the only one in this kind of situation..

LupusMom
by on Apr. 24, 2007 at 5:59 PM
In 2004 i weighted 168 and was living the life of a biker chick...drinking...poker runs....dancing on the bars...FUN FUN FUN! Well i started feeling very tired,moody,no appetite,fevers,achy...losing weight like crazy, well one day i was sitting here at my computer,got up to go get a drink & i dropped to the floor, My son called my sister she came & got me...Took me to the hospital, when they weighted me i was 125....I was put through several tests. Finally they discovered my appendix was inflamed..So out it came!  After that they sent me to a oncologist(cancer doc), At this point in time i was so scared i was still having all those same systoms as before....I was seeing 4 different docs..Then they discovered my Gallbladder was not working so out it came...

Then my knee started bugging me...They ended up doing surgery on my knee...Then they sent me to cleveland clinic to get a ph monitor in my nose(it goes in your nose,Down your throat to your belly) To messure the acid in my stomach.  24 hours later i went back to cleveland clinic to have it removed...come to find out i was bottoming out acid was coming up strongly at 4am when i was sleeping so i never knew...It was eatting my eshpogus...Well i had hiatial hernia surgery. Ok..here we are today..Several scopes and other tests later..i just had a scope done a few weeks ago...with biopsy.  I 've had two Lupus flare up's in the past two weeks(Talk about scared) I have fluid around my liver and my pancreas right now....Sorry my spelling sucks(LOL) My son is so good..He helps me out so much!  Now my boyfriend is another story(you'd love that one too) Well thanks for letting me Vent... I have SLE which is the worst form of Lupus...i have fibromyagia,osteopenia(Beginning stages of osto.) and thyroid trouble...I have a VERY hard time coping & understand it all.

lionsheartmojo
by Group Owner on Apr. 26, 2007 at 7:32 PM
I AM SO GLAD 2 HEAR THAT YOUR SON IS SO HELPFUL...THAT IS GREAT...AS FOR THE BOYFRIED...WELL IS IA A MAN...AND WHEN THEY DON'T UNDERSTAND, THEY TRY TO ACT LIKE IT'S NOT IMPORTANT...BUT NOW YOU HAVE ALL OF US TO TALK 2...SO THINGS HAPPENED TO TURN OUT ALL GOOD AFTER ALL...
PEACE AND LUV 2 YA
MONICA
Mami918
by Member on May. 17, 2007 at 5:28 PM

It's so nice to know I'm not alone. I've had lupus since I was 14 and i've had my ups and downs with it. I'm glad to hear of those who finally got their SSI. My most recent problems with my lupus was after I had my daughter my kidneys started leaking protein. So I had to stop breastfeeding my daughter at 6 months and start 60 mg of prednisone. The part that pissed me off so much is I lost all of my pregnancy weight and then it came all back when the put me on that stupid medicine and on top of that it didn't even work! And i'm still not off of it, im still currently on it. hopefully i will be off soon. they also got me on plaquenil and lisinopril for my kidneys. I also have fibromyalgia and have been diagnosed with manic depression. It's just so hard sometimes. Some mornings I don't even feel like getting out of bed in the morning, it's just nice to know someone understands. 

nandonana
by Member on May. 18, 2007 at 11:57 AM
hi crystal i also have lupus i am on my way to the hospital to start a new drug orencia i am nervous i will let every one know of my progress i also was on a study for a med name rituxin you can get info in the internet .i also take 17 differnt medication cellcept, plaquanil prednisone 60 mg .developed dibetes, blood presure. in febuary i also applied foe ssi iam waitig for a response i hope to get approved , financially i need it i am married my husband is very supportive and my children too .
Crystal07
by Member on Aug. 25, 2007 at 7:18 PM

Quoting Mami918:

It's so nice to know I'm not alone. I've had lupus since I was 14 and i've had my ups and downs with it. I'm glad to hear of those who finally got their SSI. My most recent problems with my lupus was after I had my daughter my kidneys started leaking protein. So I had to stop breastfeeding my daughter at 6 months and start 60 mg of prednisone. The part that pissed me off so much is I lost all of my pregnancy weight and then it came all back when the put me on that stupid medicine and on top of that it didn't even work! And i'm still not off of it, im still currently on it. hopefully i will be off soon. they also got me on plaquenil and lisinopril for my kidneys. I also have fibromyalgia and have been diagnosed with manic depression. It's just so hard sometimes. Some mornings I don't even feel like getting out of bed in the morning, it's just nice to know someone understands. 

Hang in there.. I know the steroids suck.. I am huge.. I've been on it for over a year now.. when I get to about 12.5-10mg.. I flare.. I hope you get SSI.. I will be praying for you all.. I have had a really bad couple of weeks.. so forgive me for not responding til now!

Crystal07
by Member on Aug. 25, 2007 at 7:22 PM

Quoting nandonana:

hi crystal i also have lupus i am on my way to the hospital to start a new drug orencia i am nervous i will let every one know of my progress i also was on a study for a med name rituxin you can get info in the internet .i also take 17 differnt medication cellcept, plaquanil prednisone 60 mg .developed dibetes, blood presure. in febuary i also applied foe ssi iam waitig for a response i hope to get approved , financially i need it i am married my husband is very supportive and my children to


I have talked to my dr many times about orencia.. and rituxin.. he doesnt think he can get me in a clinical study since I dont have the kidney problems.  I guess the study is only approved if you've had kidney probs from the lupus. He is friends with a dr in KC, MO that he wants to send me to, he works with the clinical studies up there and he is wanting to get a second opinion so I know how it feels being on to many pills to count.. I dont know how many I am on now.. but its a lot.. its a wonder my body functions any more.. I feel like a toxic waste site.. lol!  Im sorry this response came so late.. Its been a hectic and long summer.. feel free to write me anytime.
Crystal~!
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