A discussion07/02/2008 12:07:46
You have Lupus - SLE - the first time I heard this was in November 1982. I was also told that I would not be able to have children and that my life expectancy was about 5 more years! Nice thing for a 20 year old, newly married woman to hear. Of course I was devestated - the reports that I got were not favorable and I felt like I had been run over by a truck. I had been sick for what seemed like a life time and no one had been able to tell me what was wrong until that day.
26 years later, here I am, healthy with 2 grown children and a far cry from devestated. I live, for the most part, a really normal life almost never bothered by this disease that was supposed to be my death sentence so long ago. I have come to terms with having a chronic condition, I have learned to live within some limits and I thrive.
There were times throughout this journey where the road was rocky. I was on disability for a good number of years, unable to function like the "normal people" who held 40 hour a week jobs. But there was blessing in that. It allowed me time to be a stay at home mom when my kids were small and that meant everything to me. I believe that the day to day of this disease (it could have been any disease) was a contributing factor to my divorce. I can only imagine what it is like to think that you have married someone who is healthy and vital and discover that you may be the primary caregiver of not only your children, but your spouse. I can also imagine that I was at the very least difficult to live with while I was in a cycle of chronic pain. There were days when it hurt to be touched and when I hurt I am crabby and not so fun to be around. Can you imagine attempting to make love to someone who doesn't want to be touched and who might just yell at you for trying?
I believe that coming to grips with the reality of chronic illness is what has made me well - accepting, rather than pushing against, my limitations and being at peace with myself has made all the difference in the world. Learning constructive ways to deal with stress and to let it go have changed and enhanced my life.
And then too, I have been exceedingly lucky to have not had many major flares since the original diagnosis - no organ involvement. I know that this is lucky because I have seen others who hav enot been so lucky and so every day, I say a prayer of gratitude for this blessing.
Living with Lupus for me has just become - no more fear, no more anger. It is what it is and I get to live with it
The discussion forum is currently unavailable to post new discussions or comments. Please check back soon.