Living with Lupus

Pearls and Dreams

Living with lupus.

Hard thing.
Suffering with lupus, that's a given.
Being afraid with lupus, that happens.
Sleeping with lupus, that'd be nice, if I could get past the pain to get a good nights sleep.

But LIVING with lupus?

I had plans for today. I was soo excited. I've planned on this since September. I was going to have an Arbonne party. Arbonne is a skin care product ... and it's the only thing that's helped my lupus skin ..well, Arbonne in conjunction with oral prednisone and topical steroid cream, stop any one of the 3 and bam, my skin doesn't like me again.

Arbonne is expensive stuff ..well, sort of, it's expensive in the outlay ... but not so much in the long run. I was paying $7 a month to get lotion from Walmart ... Nutragenia ... Big bottle,and I was using the whole bottle a month. I got a 24 oz bottle in December 2003 from Arbonne, and I still have an ounce or two left. It cost $24. A little over 3 months worth of Nutragenia and it was paid for!!! BUT, having the $24 to put out, when you live on disability is a problem. So, I was going to have a party, then I'd get the hosting cost and free products from sales.

But ... lupus got in the way. I'm flaring badly, pleurisy, my fingers are swollen, my lower back is hurting, the costrochondritis ..geesh, I can't even turn without feeling like someone is punching me in the chest!! My elbows feel like they are on fire, and my feet feel like they're in ice. Add to that, I'm dizzy and my head hurts and we have a full blown lupus flare!

It's a weekend, I could go to the ER, but, they'd just say "yep, it's a lupus flare" and send me home. Funny, docs, always want you to go get help when you need it, rheumy's, neuro's, ortho's they all say "when you get that bad, don't wait, go get help" then you go the ER and the ER says "we can't do anything for you, we're not a chronic illness care center" and they're NOT.

When my MG flares, yea, I'll go running to the ER because I could go into respiratory distress. But my lupus? I have no organ involvement (well, discounting the skin stuffs) so what are they supposed to do? Tell me my sed rate is high ? DUH.

I'm taking prednisone 5mgs, Cellcept 3000mgs, Celebrex 400 mgs, and Ultracet. There really isn't anything anyone can do besides those! Yea, they could give me vicodin, but an ER doc isn't going to give someone they're not familiar with a narcotic for a lupus flare!! (and I'm not sure how I feel about that, part of me agree's, I've known a drug seeker, part of me disagrees today cause I'm hurting so badly) My PCP is out of town, so I can't call her to get something.

So, I rest, play on line so that I'm not up and around doing things around the house that need to be done ... and ... wonder how long this flare lasts. Wonder what caused it ... was it the drastic weather changes? 14º less than 48 hours ago, with freezing rain, and today's high is supposed to be 55. The last 3 Thursday's have been DRAMATICALLY different 3º two weeks ago, 73º last a week ago, and 17º two days ago. Ever since getting sick, my body has not done well with drastic weather changes (so Why am I living in Oklahoma????) Is this flare because I'm fighting pneumonia and it's not getting better? Is this flare because I'm fighting pneumonia and I've tried to go on with life as normal this week? Or is it because the medications they've given me FOR the pneumonia aren't too good for lupus? Why is the lupus flaring SO badly and the MG is at a pretty typical icky ucky not breathing too great but other than that, I just feel my normal weak muscle's?

Most of all

I'm mad because I am missing out on living a life that most people don't even think twice about. I wanted to have that party today.