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mb
07-25-2008, 05:11 AM
Hello from Tulsa! This is the first time I have been depressed enough to find other people who have this stinky disorder...I am so fatigued all the time and maybe feeling like knowing that there are others out there struggling to have a normal life in the midst of this will help. I try to be as active as possible in non-flare times. I feel young (most of the time), I have a great career, and a great family (who don't "get" this LUPUS beast). With all of that going for me, how can this beast be defeating me so?

Last year, I ran a 5k (Koman Race for the Cure) and today just sitting here typing is bringing me so much pain, that I am almost in tears. Suffice it to say I need to be a part of a community who does "get" it. Thanks for being out there.[/b]

KathyW1958
07-25-2008, 06:10 AM
Hi and welcome to the forum. I have had lupus for a very very long time. I hate the way that we are forced to change our lfestyle too. I hope that you keep posting. There are a lot of good folks that come here.

Hugs,
Kathy

Oluwa
07-25-2008, 07:21 AM
Hey Tulsa...

Welcoming you with open arms...

Lupus a life changing disease. When we think we changed all we can, we are called to change some more. Sometimes we do it reluctantly and others it just happens and we fall into the new. Soon the new becomes the old as we wait to change up, yet again.

Sometimes during remission times, it is better to be moderately active instead of overly. Can be beneficial in prolonging the remission.

I find it is key to keep a steady balance of all things, all the time..well, sometimes I let loose....and then I have to be willingly to pay the piper, Lupus and times he collects big time...

I have found it is important to be apart of a support group, who gets it. Online, I think you stumbled into the best place. It is a very active family and we want to wlecome you to it...again welcome..

Be well..hugs,
Oluwa

laurid8967
07-25-2008, 07:20 PM
Welcome MB..
Im sorry your not feeling well...I find myself on the verge of tears alot.. I dont cry though because the tears barely come out so it hurts!!! I have Sjorgrens as well - lol.
Congrats on the 5K...what an accomplishment!! I used to LOVE to run...I was down to a 7 minute mile when I had to stop because I jsut didnt have the stamina anymore. I really miss it!! (And I would far prefer a runners body to a prednisone body..lol)
You will be glad you stopped by...this is the best site, bar NONE, and the info is very accurate. Everyone treats each other with kindness and compassion...I am so grateful I found my way here as well...
Hope your fingers feel better...let us know!!
Love Lauri

Saysusie
07-26-2008, 12:12 PM
Hello MB and welcome to our family :P
As you've seen, everyone here does "get it" and truly understand what you are going through. You've come to the right place in order to be with people who understand, who can offer advice, who can answer questions and who are more than willing to just be here for you when you need it.
As Oluwa mentioned, it is best to keep your "non-flare" activities somewhat moderate. We have all been guilty of over-doing on those days that we feel relatively well. However, we find that we suffer for days, weeks and sometimes for months due to our over-zealousness. I know it is hard, when you are feeling relatively good, to not want to try to do all of those things that you could not do when your were sick....but it is important to continue to be careful and to moderate our activities.
I am a big proponent of education about our disease and I think that it is equally important for us to educate our loved-ones. As long as they "don't get it", you might have difficulty in their responses to you. Perhaps you can begin now to educate them about Lupus; its symptoms, its medications (and their side effects), its treatments and, specifically, how Lupus affects you. Knowledge will help to lessen misunderstandings and, most importantly, will enable you to become pro-active in your health care.
In the meantime, you are always welcome here to our family where no one judges and everyone cares.

Peace and Blessings
Saysusie