where am I...

So every time I start to feel good I wonder, is it working? I just don't know...

Monday's are the hardest day of the week for me. I always come home and crash. But last night I came home and realized I didn't feel the need to "crash". I did, but I realized that I did it out of habbit. So now I need to learn how to take it easy in the evening and still get things done. That seems easier said than done.

I wasn't free of pain. Actually I have a "new" pain that is involving the whole right side of my body. It is wierd, part of it is muscle and part is joint. But I will push through it and hope that it will be gone in a day or two.

Last weekend I met Jordan Babineaux from the Seattle Seahawks. My husband and I are BIG Seahawks fan (Big NFL Fans, really). I had heard that he has an orginaztion in Texas to raise money for Lupus and ever since I have been spamming him on twitter hoping to see if he can help our small orginazation in Seattle.

Ever with my flare I made it to West Seattle (About 30 minutes from home) and to the beach and waited. I was so excited. He was attending a walk and told me I could find him there. I spammed him a ton again telling him where I was and all of a sudden he waved to me across the crowd, I was elated!

I walked up and he instantly hugged me (Which I guess is a Texas thing- I'm not a real touchy feely person cause usually it hurts when people hug- they don't get that I am in pain all the time). We talked and he signed my jersey & took a photo. He is one of the NICEST people I have ever met. I can't believe how twitter has connected me with so many cool people.

I have connected with Blockheads, had messages back and forth with Jon Knight *swoon*, had dinner with Raheem Brock, Matt Hasselbeck remembered my tweets when I told him who I was. Conversations with Aaron Curry, connected with other Lupus patients who have been such an encouragement to me, won a ton of stuff and now met Jordan.
I really hope his schedule allows for him to help us out. He seems like such an awesome guy.

Week 7?

So apparently I was wrong. It's 8 weeks from the second infusion.

It's a long waitting game.

I'm tired.

I don't feel any different yet. I am keeping my hopes up but also getting very impatient. Maybe it's because it's almost summer and I continue to fill my schedule with more and more wating for it to kick in.

But will it? That is the tough question.

This last week has been extra hard. I got a cold. WHen you are on immunosuppresents you just stop them and your immune system starts working again and the cold is gone. But when that drug is an infusion you don't get to stop. So I wait hoping that rest will take care of it.

Still have the rash. It's been 4 weeks. It is getting better but very slowly.

Week 6

I am 6 weeks in from my first infusion. Yes I am counting the weeks. Just 2 more til I know if it works for sure or not. Part of me knows that the 8 week window is not set in stone... but I'm still waiting.

Each time I realize something good I wonder "is it working?". Things are pretty much the same. I am exhausted, which is normal. And my monthly flare came as expected. So I am waiting and it's making me nuts.

May is Lupus awareness month. I am doing all I can to raise awareness. I get so frustrated that in October all I hear and see is pink. I wish May was like that for Lupus. (BTW- not complaining about BC awareness).

By the way

I am blessed by your comments. They are so encouraging.

I am also available on email too, so feel free to contact me if you ever need to talk. Lewisdca@msn.com

Thank you all so much! many of you I have not met, but you guys are amazing!

Update

So things aren't horrible. They are actually back to "normal"... sorta.

So the swollen joints are gone, but my hands are still sore and don't like it when I do repetitive motions too much. So I am trying to take it easy. Apparently it can take up to 8 weeks for the infusion to show it's working... Today I am on week 5, so I am still hopeful.

Right now I am dealing with a rash all over my torso. Went to the Urgent Care clinic on Saturday night and was told I was having an allergic reaction to something, but no body knows what. I have racked my brain but we haven't changed a single thing. And apparently it's been too long for it to be a reaction to the infusion.

So he said "Steriods" and I proceeded to argue. I finally said you can prescribe them til you turn blue, but I wont take them. So if I have to deal with this forever I will.

I'm starting to question that decision.

Part of me is willing to try anything. It looks like I have chicken pox and the rash is starting to climb up my face. So what do I do? I just don't know.

And on the other hand, I'm stubborn. Steriods make me fat, grumpy and sleepless. Why would I take them?

So as I sit for 3 more weeks waiting for an answer. Hoping against all hope that the answer will be exactly what I need. Waiting is so tuff, but I will wait. Counting the days.

I hope you all are having a great day and thanks for letting me rant.

11 years

11 years ago this month I was dianogsised with Lupus. When I first got diagnosised I thought Lupus would never run my life. I was going to be stronger than it. I was going to beat it.

Well in 11 years I have learned a lot...

I have learned to listen to my body and I have learned that I cannot ignore my Lupus. The last year has been the hardest. I have had to really listen to my body, I have had to stop things I love to do and I have tried all kinds of new medications... the latest one has sent my body into a major flare. I hurt from head to toe. It is getting better, but slowly.

I kept reminding myself that I one of the lucky ones. But I'm starting to think i'm not. Sure my lupus isn't attaking my kidneys, but it is attacking my joints and my lungs it makes me exhausted and gives me headaches... maybe nobody has a good strain of Lupus. It's time for me to open my eyes and start realizing what is going no and start living my life.