The morning(s) after

A couple weeks ago, i had a party.  Well, not a party in the fancypants soiree type of thing, but a casual gathering of friends, just and excuse to make yummy food and eat, drink, and be dorky.  Preparing for this was a fairly major undertaking for me, and i am still recovering from it all.

such is my life.

Am i complaining?  no.  am I frustrated and sometimes angry and most of the time lots of other things i don't quite have the words for?  you betcha.

my monday through fridays are spent working a not horribly difficult job in a big scary corporation, and my evenings and weekends are spent recovering.  A good week will allow me to have more the rice chex for dinner, and i might even be able to stay on top of the dishes.  in a not-so-good week, i drag myself to work work and back and that's just about it.  good or bad, everything else tends to get overlooked.  junk mail piles up, clean laundry never makes it from the basket to the closet.

Winter is especially difficult. it's so cliche, but this time of year i get sick and tired of being sick and tired. i force myself to have people over at least once to keep myself from turning completely feral.  tonight, leaving work, it was such a relief to see the sun.  i drove to work without my headlights on because it was bright enough, and driving home was the same.  it's the first time this winter i've been able to do this, and as dorky as sounds, seeing the sun return gives me a tiny glimmer of hope.

New results

After an impressively long game of phone tag with the doctor's office, I finally got to speak to a human (the nurse) who told me that my lab results showed everything was "just fine". 

i want to see the numbers for myself, and do some digging as to what's what on these blood tests, but I am relieved to not be facing some new and troublesome craziness.

Of course, this makes me wonder what happened with the first test - bad sample?  lab error?  something I did or didn't do that day that I didn't or did do on Monday? 

in the eight years I've been treated for this disease, I've never done much digging into the specifics of the blood tests.  Clearly, I need to do my homework, and start taking a more active role in this.

Hurry up and wait

one of the more annoying aspects of Sjogren's is that the disease itself isn't treatable. The best I get is the treatment of symptoms.  Don't get me wrong - i'm thrilled that modern medicine allows me to take anti-inflammatories and saliva-stimulating drugs and eyedrops to east the swelling and irritation in my eyes.  I just get tired of not being able to make it go away. 

quick FAQ

• It's pronounced SHOW-grins.  The J acts like an H. 
• "autoimmune" means the body is attacking itself, not just the nasties that need it. 
• No, you can't catch it from me. it's more likely i'll catch whatevver germ-bug fugitive you're harboring.
• No, it won't kill me. Not directly, anyway. 
• Sjogren's is a lot like lupus, but with a little bonus.
• And yes, this is the same thing Venus Williams has

Any other questions, feel free to ask.  I will be addressing all thing Sjogren's in the coming weeks.