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Discussion Starter · #1 ·
Hi everyone! I have lived with Lupus for 23 years.

I am 45 years old and was diagnosed with SLE in 1986. I first presented with
uncontrollable bleeding (ITP) and spent 6 months in hospital. The first
things I was tested for was AIDS and Leukemia. It took them a while to get
to SLE. I remember the first 5 years being very bad. In and out of
hospital, various organ involvement. Then I was fine for about 10 years
with on and off flares which were easier to control by increasing my Prednisone levels. Five years ago I had a horrible flair. I developed
Vasculitis, got Gangrene on two of my toes, went on MASSIVE doses of Prednisone and even went on a prebooked cruise with my husband and stayed in our room the entire time! Came back and had a stroke, had my toe amputated and gradually got better. I am now in another vascular flare, not as bad though and was just diagnosed with Antiphospholipid Syndrome. Trying to deal with that now. Lots of decisions to make.

I remember being told that I had Lupus. I was in a room with a girl who just had a baby and was also newly diagnosed. Her husband left her because of it. So sad. We spent 6 months together in that tiny hospital room. When we were released, she just layed on her couch and wanted everyone to tend to her. I returned to work and tried to get on with my life. I remember visiting her and she was so depressed all the time and would not do anything to help herself, we finally drifted apart. I am happily married to a very supportive husband who loves me whether I am 300 pounds from Prednisone or not. He is my rock. We own a fine food/catering company. My staff are also very supportive of me and treat me with kid gloves. I am never down, I always have a smile on my face and I hardly every complain. I know that most people have worse problems than me. Someone once told me that if you get all your friends together and told them to throw all their problems on the front lawn and then go an choose one to take, everyone would always choose their own problems back. I think this is true.

Looking forward to meeting everyone!!
 

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Welcome

I am new to this site and I welcome you so far I have read a couple of postings and can already feel this is a positive site. I admire your tenacity and wish you well to keep going. I relate a little how that young lady you were in the hospital feels. I am battling depression too and hope that it doesn't win. Hearing stories like yours will help me cope, thank you for sharing it. :)
 

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Discussion Starter · #3 ·
I also feel this is a positive site. Hang in there and things will work themselves out. Ask me anything you want! Thanks for the welcome.
 

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Hi there and a big warm :welcome: to the forum!!

I am sorry to hear you have been through so much with your health...you seem to be a fighter and that helps with this frustrating,unpredictable disease!

I am glad you have a supportive husband,I do too thank goodness!..although I wouldn't be without all my 'lupie' friends on here now,they have been a godsend :)

I am sorry to hear of your recent APS diagnosis,if you have any questions please feel free to ask.
I hope you enjoy being a part of the forum.. living with lupus for as long as you have I am sure you alsohave a lot to offer.

take good care..karen x
 

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Discussion Starter · #5 ·
Aw thanks for the warm welcome Karen. I have never reached out to forums but this APS diagnosis has thrown me for a loop. I sure hope I can help out some people along the way! By the way, how do you get a picture like you Minnie mouse to show? She is very cute!
 

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Hi again :)

Glad you like my picture,my daughters chose it :) If you go into your USER CP,(at the top of the page) look under SETTINGS & OPTIONS where you will find an EDIT AVATAR in the list..when you click on that it will give you the option of choosing an avatar.
let me know if you have any problems.

I am also new to forums,this being the first & only one I have been a part of :) ...I'm not suprised the APS has thrown you off,you have enough to deal with,there are quite a few other members with APS I am sure they will give you any advice you need..my sister actually has APS but unfortunately I don't know much about it except what shes been through & her meds :rolleyes:

bye for now..karen x
 

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hello Just wanted to welcome you. I am a long term patient too, a good 25 years. Also Daughter has Lupus and Aps.

Take Care,
x Lola
 

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Discussion Starter · #11 ·
LolaLola;507629 said:
hello Just wanted to welcome you. I am a long term patient too, a good 25 years. Also Daughter has Lupus and Aps.

Take Care,
x Lola
thank you Lola. You are the first person I have met who has lived with this longer than I have! I would love some more information on APS if you don't mind. I have not decided if the risk of going on Coumadin is equal to the risk of clotting. How is your daughter doing?
 

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It's nice to meet you marbie.:)

I have been diagnosed about 34 years (I think) but luckily it never become very complicated or severe, relatively speaking.

Bye for now
Clare
 

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new to the illness

8) :rolleyes: :worried: :sad: i to am new to the world of lupus owners(i wont be owned by ) i to was scared ,angry,confused,and so much more. am angry that at the moment i dont have the energy to do all the things i want likewalking,shopping and playing with my kids.i keep going as i am determind not to let it get the better of me .keep your chin up and laugh as much as you can . hugs and love to all .
 

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Hello Mariegreen,

Welcome to the site... You sure have been through alot of stuff... But with that attitude you will survive... I live by the same motto...
I beleive everything in life happens for a reason sometimes we dont understand it right away, but we eventually do... Of course this is only my opinion... I have dealt with a lot of things also and to me life is beautiul and I am a very happy person...
I am looking forward to chatting with you.. Take care of yourself and keep that smile on your face...

Love Penny
 
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