Walk with me?

I somehow have put off forming my "team" for this year's lupus walk. Perhaps I've been preoccupied. Perhaps it's because I myself can hardly walk to the bathroom, let alone a mile. Perhaps it's b/c of the drama, but whatever it is, I need to do it. I need to be one of the hundreds (thousands?) walking downtown on Sept 6th. I had grand aspirations about 3 months ago of having a bunch of people with me to celebrate my 25th Anniversary of fighting lupus... and it got put on the back burner. I've done nothing besides thought about it occasionally. Very occasionally if that. But the fact of the matter is that probably the night of the 5th, I'll register for the walk, make plans with Ed and the little man to trek to the city, don my shirt from last year or the year before, and hobble a mile. I am not going to ask people to give money-- we already did that with the honorarium. I would just like it if I had a whole boat-load of people there with me. We could make a party out of it or something.

So if you want to join me, send me a comment, visit this website http://walkforlupusnowil2008.kintera.org/faf/home/default.asp?ievent=274110 and let me know where to meet you. It's always good to do things with friends, yk?

Off to get another steroid shot, take *more* tylenol, and hit the sack. Remind me to buy stock in Tylenol, btw...

The man I married is...

How long have you been married? not quite 6 Years
How long did you date? 18 months, exactly
How old is he? 36
Who eats more? Him
Who said I love you first? He did.
Who is taller? Him. Everyone's taller than me!
Who sings better? tough call. He has a good singing voice.
Who's temper is worse? I'm meaner when I'm upset, but he's got the short fuse
Who does the laundry? Always me, all of it.
Who pays the bills? me
Who cooks dinner? 80% me, 15% the cooks at the restaurant, 5% him
Who mows the lawn? He does. I wish a lawn service did b/c it's 2 1/2 hrs out of our weekend!
Who wears the pants in the family? me, though he'll argue that til the sheep come home, and they stay out later than cows. ;)

You REALLY want to know?

No one ever seems to "get" what a lupus flare feels like so, seeing as I'm pretty well acquainted with mine at the moment, I thought I'd fill you in...

1. Open eyes and stand in front of a fan on high for 10 minutes. Do not blink or look away. When 10 minutes is over and your eyes feel like stinging crunchy little balls and hurt worse when you cry, you can move away from the blowing air.

2. Slam your fingers in the car door then put on big Mickey Mouse type gloves. Try to pick up a toddler. Oh, and stop using your thumbs all together so you can grip like the cat-- the declawed cat. Remember, your thumb joint right by your palm has gotten slammed in that car door!

3. Get kicked in the side of the knee, both of them. Hips too, but the inside part. Hard to kick, I know, but that's where the pain is. After the shock of the pain when you bend your joint, slice it open and pour sand inside your knee so that it hurts even more.

4. Twist both ankles severely so it hurts like hell to put your weight on them. Don't reach for crutches-- they won't help and you can't use them anyway.

5. Drop bricks on your feet so they swell.

6. Slice open your feet and put little marbles under the skin so that when you walk (if you can) it always feels like you're walking on rocks, er, marbles.

7. Don't sleep for 3 days straight. Feel the exhaustion? Ok, now that will be the level that you live with despite 10 hrs of sleep at night plus naps. You can not catch up no matter how hard you try.

8. Get punched in the jaw so that your jaw joint swells and you can't shut your mouth. Try to eat/chew.

9. Tie your ribs together (surgical procedure done at the kitchen table ;) ) with razor wire and put an anvil on your chest. When you try to breathe, it will cause you excruciating pain which is a million times worse when you lie down. Have fun sleeping! And fwiw, you'll have problems ever eating ribs again for as long as you live.

How to get rid of it? Wait. None of the meds ever really work anyway, so just wait and pray for relief. Pray for sympathy which won't come b/c you still have your hair and there's not a descently popular celebrity out there that is campaigning for your cause. Wait til it goes away before the meds that might work cause you more harm than good.

Lupus is real and I hate it with every ounce of my being. HATE IT.

Scared and worried.

I need prayers for me and my baby. I have lupus and found out yesterday that I'm making, albeit in small amounts, the antibodies that can harm the baby's electrical system in his heart. :( There is NOTHING we can do. NOTHING. NADA ZIP ZILCH. I can't take a bunch of immunosuppressants or steroids b/c a) the side effects might cause preterm labor and b) a lot of the immunosuppressants you can't take in pregnancy b/c they're chemo drugs. I am convinced that if there is something wrong with this baby it is my fault even though there's nothing I can do to change my situation other than pray that I stop, out of nowhere, making the antibodies. I'm stuck. We're going to monitor the baby's heartbeat weekly-- we bought/rented a dopler with a recorder in it so if there's something odd that we hear, we can play it back for the dr. DH at least knows what to listen for, but takes the "tough love" approach with me, telling me I'm over reacting and to stop acting like a basket case. There was no taking me in his arms and telling me it's all going to be ok. Infact there never is that sort of love from him, so that's kinda putting a stress on this whole thing. I pointed out to him that I dealt with him being an anxious mess for like 3mths before his boards so he can deal with me for a little while, but he just wasn't and isn't there in the way I need and I don't know if he has it in him to be what I need even though I tell him what I need in a million different ways, hoping one of the ways will be comprehendable. When he left for Boston today I could hardly kiss him good-bye and when he called this evening he didn't tell me that he loved me. I have a pit in my stomach that's hugely cavernous from all of this. I need him right now, but not the him that he's being.

UGH. I'm going to bed b/c it's the place where I won't perseverate on this.