Wednesday, June 29, 2011

I've been avoiding you...

bad I know. But sometimes typing it out makes me have to accept it. I'm in a flare... a bad one. My body hurts.
For those without Lupus, think of what it's like to have body aches with the flu, then double that pain and know that's what it feels like every day. I'm sure I have said it before, but I hate this.

Each flare makes me feel like lupus is breaking me. I know in my heart it's not. I know that with God's strength I will get through this. It is so funny to say that. I have really been struggling with that personally. I find it easy to give God my emotions, sadness, stress, happiness, worries. But how do I hand over my physical well being to Him? He isn't physically here to let me lean on to walk down the hall. I am really struggling with that... not in a bad way, but in a way I so despartly want to understand.

There is a holiday weekend in my future. I had to take the 5th off just to recover from it. I plan on staying in bed as much as possible and just resting. But for now life my continue on.

Once again I am blessed with an AMAZING husband that is letting me rest when I get home from work, offering to sleep on the couch so I can move around as much as possible and just being amazing.

Wednesday, June 22, 2011

Dear Family & Friends

You may be aware that I am a member of the Board of Directors of the Pacific Northwest Chapter of the Lupus Foundation of America (LFA). Two of my responsibilities are to increase public awareness of the disease and to raise funds to help our nonprofit.

I hope you’ll help me accomplish both of those jobs.

On Monday, August 1, we will be hosting Hit the Links for Lupus at The Golf Club at Echo Falls, near Woodinville. 90% of the money raised at this event will fund local programs for our members such as brochures, support groups, teleconferences and a lupus help line. The rest of the funds will be pooled into our national program, Breaking Down the Barriers, which funds research to find the causes and a cure for lupus.

The fight against lupus is important to me. If you read my blog, twitter or facebook you know that I have Lupus. I have had Lupus for 11 years. When I became invovled with the Lupus Foundation's Pacific Northwest Chapter I wanted to raise awareness. To share with people I connect with every day on what Lupus is about.

The effects of lupus on families can be devastating. Lupus patients deserve better and more effective treatments. This year, thanks to the efforts of the LFA, the entire lupus community and dedicated scientists, the FDA approved the first new drug for the treatment of lupus after 56 years of waiting for a breakthrough. That is too long a wait!

Your participation will help me and our local chapter make a difference in the lives of people with lupus. I promise you will have an enjoyable day on the course supporting a very good cause. Single golfers are welcomed at $150. If you can arrange a foursome, the price will be $550. Green fees, cart, beverages and lunch are included in the price. Please call 877-774-2992 or email for more information or to reserve your spot.

I hope you’ll mark your calendar and join us at 8 AM on August 1 at The Golf Club at Echo Falls ( Thank you so much for your support.

With best wishes,

So I went

I went to the doctor yesterday... it wasn't what I expected. First Lupus patients who receive the infusion need to wait 3 months... NOT 8 weeks for it to work... 3 MONTHS?!?!?!? I was not happy to hear that. So I have a few more weeks to wait.

If it doesn't kick in I start the new Lupus drug Benlysta, assuming that my tests all come back where they need to be... oh the stress. :-).

Then my Rhuemy told me she could be moving on to bigger and better things. I was shocked. I have been seeing her for 11 years. She is amazing. SHe understands me, doesn't push steriods and is willing to try so much. I was reassured that she would talk to me "new" doctor and explain me to her. I just hope that my first appointment in July isn't a total disappoinment.

So that's it, in a nutshell. My body continues to scream at me. But I am dealing with it one day at a time. Summer will be here soon and hopefully it will be mild so I can give my body a break from rain and heat.

Monday, June 20, 2011

It's been a while

So it's been awhile. I have played with this post over and over. I hurt. A lot. Pain sucks. The infusion seems to have failed. All that for absolutly nothing. I had such high hopes, but I'm over it now. Tomorrow I go back in and see my doctor to find out what's next.

It's hard to feel this way and realize it's not normal, or that my friends have no idea what I am dealing with. Nobody knows that when it rains I feel every rain drop in all of my joints. This was a weekend of rain and I was burned out on the pain.

My desire is to live, do what I want to do. But my body says no way.