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View Full Version : Wondering about the future



tintin28
01-02-2008, 02:31 PM
Hi guys (I mean that in the generic sense),

Reading through the recent posts made me wonder a little about the future.

I am 28, male, MCTD for 7 years and now with SLE. I am sure you all remember what it felt like when you are young. In your twenties, you expect to live to the ripe old age. Then when you read you have 25% chance of NOT living past your 50th birthday (twenty years after diagnosis)--it does feel a little bit morbid.

I have always pushed myself hard in my work and plans years in advance. When I managed to get a tenured university post at the age of 26--I thought my life is set--dreaming of a comfortable retirement one day.

That is until the big "L" turned me into a clown--pale face, red nose and cheeks along with the other wonderful symtoms.

I do like to think positively, but I do wonder--am I doomed to get serious kidney involvement at some stage? My kidneys were slightly inflammed from my last flare--is this really just the beginning? I was told 50% of us will get kidney involvement--is this right?

They keep telling me prognosis for lupus is generally good--but then I see these statistics and they tell me something else...or maybe I am looking at it the wrong way.

Or maybe I am just reading the wrong stats off the dodgy sites. :)

Saysusie
01-03-2008, 12:26 PM
Hi Tintin;
I can only use myself as an example. I was diagnosed with Lupus in 1985. I was seriously ill at the time. However, I was eventually downgraded to mild Lupus. It is now 2008! I have never developed any internal complications with my Lupus. So, it is not set in stone that everyone with Lupus will exponentially get worse, that organ involvement is inevitable or that our lives will be shortened.
So, thinking positive....taking very good care of yourself, taking your medications, making appropriate lifestyle changes, etc. can help you to ensure that you do not have organ involvement and that you are able to life a relatively normal life! There is NOTHING about this disease that is predictable. Each individual's lupus is specific to them and we can only do all that we can to manage our disease and/or to avoid worsening of our symptoms.

Take Heart, Be Brave, Be Informed, Be Your Health Advocate, Fight for your health! We are all here to help you in any way that we can.

Peace and Blessings
Saysusie

tintin28
01-03-2008, 06:44 PM
Thanks Saysusie~! I feel really bad for worrying over the statistics--but I figured surely there must be other newbies out there getting totally depressed reading those statistics for the first time. (My wife and I did)

Thank you for telling me your experience--the only people I know with lupus all had serious complications --so it is easy to lose sight of the big picture.

All we can do is keep doing what we love--take care of ourselves and keep pushing along~!

Saysusie
01-04-2008, 12:00 PM
Exactly....and remember, we are here to help you whenever you need us!

Peace and Blessings
Saysusie