Monday, April 27, 2009

April Flare

I need to write about my April flare. I haven't wanted to, but the whole reason I began this blog is to document things inorder to help my failing memory. I'll begin by saying that the weeks leading up to the flare were wonderful. I felt great, strong, energetic, and inspired. Unfortunately this probably encouraged me to overdo things, because I really felt like I could do it all!! This pic was taken the week before the flare hit. This is me and Twilight at our Beyond the Fringe art show opening party. I'm the redhead.
April 14th was a huge busy day for us. We were in Santa Fe that morning getting new tires put onto the little truck, and then we headed to Los Alamos to meet Twilight and Thebes to take our amature radio, HAM license tests. After we all passed with flying colors, D and I headed to Albq. It was really late by time we got there, and I had a huge energy rush. I felt wide awake and D and I were chatting up a storm!! So we went out for a late night dinner. I noticed that the skin on my hands and arms had started to tingle, burn, and itch. I remembered that on my Lupus Board they had said this was a warning sign that I'd had too much sun exposure, but I blew it off because it had been hours and hours since I'd been in the sun. So I dismissed it as irrelevant. I got to bed at about 2am.

April 15th I woke up at 9am and felt like I'd been hit by a truck. I felt like I imagine I would if I had drunk a bottle of wine, a 6-pack of beer, followed by a bottle of champagne. My head was in a tight vice of pain. I got up and stumbled across the room and grabbed hold of the table to hold myself up. The room was spinning. I started to get really hot all over my body. I could feel sweat starting to form in a rush on my forehead, my armpits, and covering my back. Then nausea hit and I began to dryheave. I made it to the bathroom and spent sometime hugging the toilet with more dryheaving. I fumbled for the faucet of the tub and got water to splash onto my face and neck. Daniel helped my back to bed and suddenly I was freezing and shivering. Every cell in my being hurt. Every joint was screaming. Even my toes were throbbing, and the sheets felt like lead weights too heavy on my feet. I stayed in bed until 6pm. Then D helped me outside for a few minutes to breathe some fresh air, and I was able to contact my friends to let them know another flare had hit. This pic is of me dressed in my Lupus clothes. This was taken during my first outing after the flare. The sun can't get to me!!!

This flare lasted about 7 to 9 days. Each day felt a little better than the previous one. But each day was filled with pain, exhaustion, and brain fog (confusion). It was at least 7 days before I could walk normally again. My joints felt thick, like they were made from clay, and my coordination was lost, and everything was clumbsy. Especially during the first few days, I was so weak. My muscles felt like I had worked them out intensely. I'd reach to pick up my glass of water, and not be able to lift it off of the table. Daniel was my hero. He never left my side or took his eyes off of me. He gave me constant TLC. He made sure I did everything possible to get better, including spending alot of time in bed. I love him so much. This is a pic of us also taken at the art show, pics taken by Thebes. I am so blessed this man loves me through everything!!

1 comment:

Lupie said...

Ok so we Lupies never learn. I think it is just taht we want to live a normal life and when we feel somewhat normal we can't help but do what we miss. I hate to tell you but you will do it again.
No one can understand what you were feeling but you know I do.
When it is happening it seems unreal! OMG I am not going to make it through this one! Lupies are so strong we do make it through.
Love your Lupie outfit!!!!
You got cojones going out in the sun after taht flare.
Living moments of normal is so heart filling that when we think back it is worth going through the flare and I think that is why we keep doing it.
You and your sweetheart are way too cute!!!!!