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Trista
05-15-2006, 06:53 AM
I was officially diagnosed (SLE) just last week but I knew it was coming. I had extensive blood work done a few months ago and the results were clear. Even if I didn't have the full blown symptoms then I would at some point have Lupus. From the doctors appointment where I first heard of Lupus until now has only been 6 months, so I haven't had the long term struggle that most people seem to experience. I'm pretty okay with the medical side of it all right now. What I really want to know is how other people have dealt with the emotions of being diagnosed. I feel like I'm on a roller coaster of emotions...somedays I'm happy to be alive and grateful for all the wonderful things in life I have been given. Other times I'm upset about this disease and the changes it has made in my life. I feel like the physical symptoms would be so much easier to deal with if I could just get a better handle on the emotional aspect.

Sheryl
05-15-2006, 07:02 AM
Hi Trisha - I totally know what you mean. For me the emotions are worse than the physical issues most of the time. I only started having any symptoms March 27, and had the "official" lupus diagnosis April 27, so I am still in a sort of "this isn't happening to me" shock.

Suddenly everything I thought I knew about my future is in question. I was/am a very physically active person and now don't know if any of the goals I had will be achievable, or will I struggle just to get through the day? Then there is the whole health insurance issue - I had dreams of leaving my job and starting my own business, but now I am "high risk" if not "uninsurable" and probably could not afford my own health insurance.

And would I have the physical and mental abilites to run the business I planned, if I am exhausted and "brain fogged" most of the time???

What about my dream of becoming a SCUBA instructor?? And what if I get really sick when I'm traveling in a third world country? Am I supposed to give up everything I ever wanted to do?

I didn't give you any answers, did I? But I understand, if that helps!

Saysusie
05-15-2006, 10:55 AM
Hi Trisha :lol:
Yes, I think that most of us have taken that roller coaster ride. In fact, having this disease for almost twenty (20) years, you'd think that I would have a lock on how to deal with the emotional side. But, there are still days when I grieve for the loss of my good health and I resent the lifestyle changes that I've had to make.
But then, I have to stop and recognize that I have not missed out on the most important things in my life. Those things are as individual to each of us as we are individuals to one another. There are many things that I had to give up and that I just cannot do. But, I am still able to be a part of those thing that are truly most important to me.
I have always abdacated the importance of taking care of our emotional health just as seriously as we take care of our physical health. By that, I mean obtaining therapy if we feel that we need it, perhaps taking mild anti-depressants to help us to deal with our stressors and emotional issues, joining a support group or even just participating in forums like this one so that we know that we are not alone!
Take good care of yourself, all of yourself!
I wish you the very best
Peace and Blessings
Saysusie