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yolosoul
09-02-2011, 10:42 AM
Hi everybody!!!

I was just recently diagnosed with SLE in April….
I take Plaquenel and predisone 2x daily
I never took anything ever until then

Totally has me bummed out….it could be much worse, i suppose.
So I try to look on the BRIGHT side.

I am having a hard time with the SUN and not being able to enjoy outside like I used to. Like the beach, golf, swimming, walking….
I get up and try exercise early and garden before it gets too strong then do my inside work… but then Im pooped out by 730 and fall right to sleep.
I have found that I am not able to walk the distance that I used to. my legs hurt so bad and my hips , one day I even had to get a ride….I just did buy a fancy bicycle that is easy to pedal ( has forward pedals) and I can last a bit longer on that than walking.

Thank you for listening!!!!

YOLO SOUL

You Only Live Once

Saysusie
09-02-2011, 01:59 PM
Hi Yolosoul;
Welcome to our family. I am so glad that you found us and that you decided to join us. Like you, many of us have had to limit our outdoor activities and re-arrange our lives so as not to cause a flare-up. I also enjoyed hiking, biking, swimming etc and had to completely change the way that I do these things.
It is possible to still do some outdoor activities, you just have to limit the amount of time that you are exposed to the sun, give yourself plenty of rest breaks, and do some activities in the evening.
We all suffer from the fatigue and it can be debilitating at times. Add to this the pain that we endure and it feels as if we are held prisoner by our bodies. But, in spite of these limitations, many of us find ways to live relatively normal lives and to continue to enjoy some of the things that we once enjoyed.
Please read through the forums (especially the stickys) and get to know our family here. Pop into any conversation that you like and ask any questions that you may have. You will find a lot of information, advice, suggestions and help amongst our members. I am sure that some of what you find will be helpful to you. Also, please know that there is always someone here whenever you are in need. Again...welcome to our family :-)

Peace and Blessings
Namaste
Saysusie

steve.b
09-02-2011, 09:37 PM
hi yolo soul,
welcome to our cyber family.

magistramarla
09-03-2011, 09:18 PM
Hi Yolo soul,
Welcome to WHL. These AI diseases can change our lives, but I've found that I can still have fun - I just have to rest more often and plan more carefully.
I still love to travel or just to go to local festivals with my husband. I have a wheelchair, so he pushes me around in it, and we plan to go places when the sun is lower and the crowds are light.
Hugs,
Marla