May 2012

With a heavy heart I must say that my flare free period is over with my lupus and fibro. The good news is that I had either 3 or 4 days without it, and I *know* they can happen now, as the last time before this one that I had any truly pain free lupus time was when on steroids and trying to keep from having Lily, it lasted less than a week. The time before that was one day in June 2009. :/

At least I know they can happen without med changes (this time I had no meds added to my cocktail to change the flare!)….

Part of that is that we’re currently with my parents, whom I have barely seen since 2007 due to living 1/3 of the way across the US.
I’ve also been trying to get more active physically, and have been taking walks with my husband whenever we’re physically up to. Sometimes we walk to one of the grocery stores in the area and have a lunch date (or at least we were), sometimes we walk to other places that are in walking distance of our home. I have some family members in walking distance so we do that.
I’ve also been processing grief more, and getting good treatment for my bipolar, which now has a new distinction of being bipolar I rather than bipolar II. Still learning the differences there.
I’ve been spending time with friends, or outside in the shade, or growing my jade plants.
My lupus is also better controlled at the moment (with no med changes directly for it), so I’ve been using every moment. I’ve had some bad flares, but they haven’t been as frequent.

I’ve found that (for me, this isn’t medical advice) cutting out caffeine, and cutting back on sugar, has helped…. especially if they are in the same day.
Having more fresh produce, and not as much frozen or canned stuff has been good.
I think it’s also that there is no cigarette smoke in or out of this house, so I’m not around those chemicals. I’d not been around them too much in the time between me being put out of work but it had kept going, so I think it’s all of that combined that has helped.

Of course, that stuff isn’t helping with any of my other health issues that I can tell, but at least my lupus is giving me a break for the moment (as long as I listen to it!)

I’m terrified it’s going to come back stronger after the break though.

If I can get whatever neurological issue I’m having under control maybe I could go back to work again, if I can find a lupus friendly work environment. Of course my bipolar needs to be under control for that too, and I can’t be having all this mania constantly, and the anxiety with it.

I’ve got pictures to share, I’ll start with the serious ones.
I (for a bit) took part in POP or put on purple (for lupus) today.

Jumping in an effort to show my sarong off

Showing my purple sarong off.

Now for the goofy pictures.

Cleavage Creature

Bosom Buddies.

I have emails by now to read, I’m sure. 
I have comments to approve and reply to….. some of which deal with Lily and I’m not in that place today.

I have a diagnosis change to talk about (which I’m trying to learn about right now so I can post on it). 

I have grief and stress and med changes all making my emotions and mental statuses very erratic.  

Doctor issues, and of course insurance issues. 

Settling back in with my parents for now while we get our health a bit better.

Stress over some decisions we’re having to make that …. are both the easiest and hardest decisions I’ve ever had to make.  

I’ve also been getting time with friends and family who have barely (if at all) seen me since I left the area in late 2007.

And Johnny and I are working on getting out and taking walks whenever his hip and all of my body will let us. 
We’re hoping that our new dr office has our records by now so we can get adequate pain management.

We’ve also seen the kids a lot since getting back to California.


Right now is about getting our lives back on  track, so I haven’t had a lot of time to post things.


My blog is currently just not the highest priority, no matter how much I wish I could write daily.