[sushi]

i read a thread posted by Douglas last year. in the post she said her doctor told her that lupus is a fatal disease and even if it takes decades it will eventually kill us.

this has made me really afraid can you tell me what you think about this?

 

[Douglas]

I am sorry that what I wrote scared you. The entire conversation (conversation? Lecture!) involved "You are not going to get better." "It is palliative care." "It is a matter of quality of life." "It takes less medication to keep the pain down than to get it down." "Take the *&^% pills!" Another MD said, "You will out live several of your organs." (I found that one particularly jarring.) "Lupus is incurable." And, although I cannot recall the exact words, they said it will eventually kill me (which is implicit in the use of the word "palliative" anyway.)
My brother plans on attending my 100th birthday party (he will be 114 at that time) and I am aiming for 124 since I promised our PhD daughter that I would begin learnign Sanskrit when I turn 125 and I have a lifelong loathing of the Sanskrit language. :lol:
Recovering alcoholics consider themselves to have a fatal disease but that they can live in recovery. I see a parallel there.
Besides I have an anaphylactic allergy problem that gives me, if I am exposed to any fruit, "four minutes to permanent brain damage and ten minutes to death". So, as I see it, it is a horse race between SLE and the fatal allergy but I'll probably be hit by a speeding semi in my 125th year.
Mind you with how the last week or so has been I might go looking for a truck.
The upshot of it all is that I would rather live happily with the information and in reality than pretend things are better or worse than they are.
It is a good life. God hasn't let me down yet!
Don't be scared, be grateful. Things could be so much worse.:hehe:
(I have no idea what that smile face means but it seems appropriate.)
Douglas+

 

[Raglet]

lupus incredibly unlikely to kill you. Honestly, I think I would be more worried about being in a serious car accident. It is true that lupus is very occaisionally fatal, but the overwhelming majority of lupies die from other things - and especially old age. That one seems to be a real killer ehehehe

Most people when they are first dx go through this omg this disease might kill me stage, but then they realise that as long as they keep in contact with their doctor and take their meds they have a good chance of a long life.

don't go cashing in that retirement fund just yet, you may need it

hth

raglet

 

[Katharine]

Hello Sushi,

I'm with Raglet on this one. There are so many things more likely to kill you.
When my Mum was diagnosed with polymyositis and lupus (she was extremely ill), one of her wonderful doctors told her that it was fatal (as in soon). Fortunately I can safely say that that doctor was no expert but he caused a huge amount of unecessary stress.

My Mum is now a very "healthy" and pretty energetic 70 year old and is currently nursing my father who never took a pill in his life nor ever coughed or sneezed!

Lupus CAN be fatal in the rarer, very serious cases. In general those people are seriously ill and on pretty strong meds. Most lupus patients have the same expected life-span as anyone else.

I am of the view that I'm less likely to die young than many of today's population. I have become very good at avoiding stress, I don't work all the hours God sends chasing some promotion or other. I believe in "work just enough to live" and not "live to work". AND I no longer drive a minimum of 1000km a week on busy auto-routes.

Remember stressing about such things is far more likely to reduce your life expectancy!

Katharine

 

[LolaLola]

Dear Sushi,
Last statistic I saw from a reliable source was that over 90% Lupus sufferers will live a full life span. That figure has almost certainly improved now.
I am 50 Sweetheart, and I hope to be around for a long while yet. We all know how anxiety making this disease can be, and outdated and melodramatic Doctors do not help!
Try not to worry,
x Lola

 

[Jenkay]

Katharine, I love your insight.

 

[Christine UK]

Oh please dont worry...
flu can kill you !!!!remain postive...
when i was dx in 1978 i was 17 and told it was a 10 year lifespan from when i was dx !!

I am already planning my 100th birthday party...and your all invited ! x x x

 

[sushi]

thanks to everyone who replied to my post, everyone makes me feel so much better.

Douglas, i did get scared when i read your post. but im glad that you and the others replied on my post. as it makes me feel so much better what everyone said.

it sounds like youve been having a tough time lately and i hope everything gets better for you soon. im sorry that i refered to you as a female i wasnt sure what your sex was.

thank you, Raglet, Katharine, Jenkay, Lolalola and Christine and thanks for the invitation ill be there.

i feel so much better.

 

[LolaLola]

Sushi, I am very glad to hear you are feeling less worried.
Now enjoy yourself!
x Lola

 

[alisiajo]

I would be very upset with my doctor if he was that down with me. As long as you take your meds and dont have major organ involvement you can live a full life. My grandma died from lupus at a young age but that was because she was misdx. They just thought she had rhuematoid arthritus. I know sometimes with the pain you hope not to live a full life like that. But sooner or later they're going to find something....I pray

 

[KarolH]

sushi,

When insight is provided it does make us feel better.

Glad your anxiety level is down.

I wish you well.:wink2:

 

[lin]

Hello Sushi, you ok now, So we all got an invite now through your post to chris's 100th bitrhday party lol so something good hey girl!! ?

you will be ok Lin xxx


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