I've taken an extended break from my blog. I stop by and look at it every once in a while and I sigh. I feel like a failure. I started this blog to spread lupus awareness, to show people what one person's life with lupus is like, and because when I see my thoughts written down it helps me to make decisions in my life. But somewhere between writing drafts and publishing the posts, real life started to get in the way. I started having increasing health issues. Perfect thing to write about! But I had so little energy that just looking at my laptop made me want to lie down. When I finally recovered enough to get back to the blog, it was time for my surgery. I had to have my Right hip totally replaced due to years worth of Prednisone use in my battle against Lupus, which caused Avascular Necrosis in both hips. The right one was worse off so it was the first to go off. Ha. Joke. Yet another very important topic I should have written about. But the experience was so terrible I just wanted to block it from my brain. And more time passed. The holidays came and went. The LFA's annual Walk for Lupus Now happened and last year was especially great because all of my friends that I usually wear my "normal" mask in front of actually formed a team to support me in the walk. Such a kind and generous act by a group of people that I love and that I know love me, but that I try so hard to keep from my Lupus world. Why do I do that? I should have written of that. I moved in the past year and will have to move again very soon this year. That's hard on anyone but on someone with a chronic auto-immune disease? I had several attacks of what I can only describe as level 9 pain from what I suspect is Fibromyalgia. My panic attacks increased in occurrence. I constantly feel as if I will faint. All these things are going on and I just sit here. I want others in my shoes to know what I went through so that they have an idea of what can happen and what to do. I'm no therapist or life coach. I'm certainly no one's role model. I'm just me trying to figure out my life against Lupus. Maybe by sharing that I can help someone else out there in their battle too. I took some time off. But I'm ready to come back and tell my story. If anyone is out there listening, I hope whatever battle you are facing that you are able to dig deep inside and do it. And I hope that your battles don't stop you from living your life as you want to live it. Unfortunately I allowed my fight to take over and I gave in for a very long time.
I'm tired of not being the one in control. And right now I'm facing what may turn out to be a Defcon 3 Lupus flare. My kidneys may require Chemo yet again. I'm always tired. I'm always sad. My immune system is weaker than it usually is (Pretty weak already!). My Prednisone dose has been raised by more than 4 times the dose I was at. I'm stressed beyond all imagination! Our housing situation has gotten dramatic with TROs, court, screaming at people. The man I'm in love with and have been with for almost a decade has decided we may be better off apart...
I don't know what will happen but I know it will hurt. Yet this time I refuse to hide in my cave. I'll drown in that sadness if I do that.
