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Living in the moment.

Sep 07, 2015 7:14 AM

I have EDS Hypermobility, Lupus SLE, genetic migraine and faulty L heart valve; despite all these multiple lifelong partners and experience daily difficulties on reflection have wonderful joyous moments too as last Saturday
5/9/2015, yesterday and this morning 😀

Sep 07, 2015 11:05 AM

Chui, that's awesome!!! I had a great Saturday as well with wonderful memories and fun from Saturday!! I'm paying for it now though. It's ok. We have to grab fun where and when we can!!

Sep 07, 2015 11:08 AM

I did a lot today but paying for it too lol....always in the same boat as everybody else who has pain. What else can we do when we are not in pain? Rest more?!?! That would be absurd.

Sep 07, 2015 4:25 PM

Exactly grab fun when we able to as this afternoon I'd terrible migraine beside the fatigue. Nite nite.

Sep 07, 2015 5:23 PM

Lol Octobot!! I have actually done that out of fear .. well sort .. i don't think im ever not in some kind of pain .. but if ive had a bad flare recently I will rest rest and rest but usually because i am afraid to flare again because I always do. Since the new meds though it hasnt been nearly as bad .. today my brother and son helped me go through half of the stuff in the basement because we will be renting a dumpster in a couple weeks (im so excited to be finally cleaning house!!) I cant do the lifting but I did a lot of other stuff. I was down there for 5 hours .. it was unbelievable!!! Not sure how I will feel tomorrow but so far so good.. usually the side effects come right away.

Sep 07, 2015 10:02 PM

Chui, I like to say one day at a time, one step at a time. We can't just roll over and wait to die. I'm glad you enjoyed the day, but hate you got a migraine. I hope you'll feel much better this week. 🙏🌼

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