The Best of Times, The Worst of Times OR For Every Action, there is an equal and opposite reactions OR i don't know..

Hi Friends!

Life is complicated and when I don't blog for a while, it's usually because I have mixed-up feelings and am struggling with them...SO today, I'm blogging anyway...I couldn't decide on a title or topic, so I'll just go with some random thoughts...

Life sucks, but "if the world didn't suck we'd all fall off." (Larry the Cable Guy)

I think I'm in remission. That makes me happy after 3 years of fighting for my life against my loopy disease. However, I'll probably be taking chemo drugs forever to sustain this remission and having no immune system is sometimes as hard as having an overactive immune system. I can have lupus kill me by attacking my organs one by one or I can kill my immune system with chemo drugs -- and catch every illness there ever was. Obviously, I choose to live -- BUT I don't like the no immune system thing 'cause right now I have the flu...And sometimes I wish I didn't have to choose between overactive or no immune system...sometimes I want to be normal, but then I remind myself that Normal is just a setting on my dryer...so who cares...but sometimes I do, you know what I mean?

Which brings me to: I love Channel Islands High School. Cameron and Molly go there. They're learning and growing and being highschoolers...But I hate the beginning of the school year when they bring home every illness they're exposed to.

In turn that brings me to -- I hate that me, Cam, and Isaac have the flu. I hate that Bill is not here. I hate that I had to keep Molly at home from school today, because I was unable to drive her. But I love that Bill and Nate are in D.C. bonding and seeing the sights and I love that Molly is taking care of the rest of us -- cooking and cleaning and loving us...she's an awesome young lady!

And I'm sure others feel this way -- but I hate children puking on the bathroom floor late at night (although at least he made it to the tile, and out of the carpeted bedroom)...and I hate deciding whether Molly (who is still healthy) or me (already sick, but with no immune system) should be the one to clean it up. But I love Clorox disinfecting wipes and the sanitary setting on my washer. They take what's dirty and disgusting and make it germ-free and white as snow...sort of reminds me of God.

I hate that my attempt to wean myself off Percocet failed, and I'll be taking it for however long I need it for the pain...BUT I'm glad it now completely takes the pain away and I don't take morphine or dilaudid injected into my sickly veins.

I hate looking at the big picture...I hate thinking ahead or worrying about what's next...but I thank God for the knowledge that I don't have to...my life is now, this moment, and I am glad that this illness showed me that I only need the grace necessary for each moment. I trust God to have the plan, but I'm human...and sometimes it seems too hard.

I hate people who think I should be positive all the time...and visualize the chemo eating up my lupus. I want to scream at them to shut up and listen! I have the disease killing my tissues, joints, organs -- one by one, you get to give advice when the toxins are hooked up to the central line which has been surgically implanted into the vein leading to your heart. If you haven't walked in my shoes, you don't know...

And on the other hand, I have my positive days...my good moments, I'm thankful for a cure...I'm thankful for the people in my life who just listen, and hold me, and love me as flawed as I am. And I recognize that everyone has something that they're going through...I thank the others who are brave enough to share their struggles and triumphs with me...it's just the JOYSUCKERS in life -- I have to find a happy medium between being patient with them and protecting myself.

I hate being viewed as an illness...thanks for being considerate, thanks for recognizing that I have limitations...but I was Michele long before this happened. While I'm fine with sharing who I am and never thought I needed to hide this illness -- please view me as a whole person who happens to be sick, not a sick person who need help.

I'm sad and happy at the same time that this happened to me...people who I thought loved me, fell away and others stepped up...complete strangers reached out to me and showed more caring than others I had known forever...please don't bother if I'm an obligation -- I don't need your "help."

I struggle with the brain damage that occurred when the lupus started eating away at my brain. Please don't tell me about the friend you have with lupus who has skin problems -- my lupus attacked my brain, my heart and almost killed me. At some point, it probably will kill me. I've seen the scans -- I know my own brain. It has it advantages -- you can tell me the same story over and over, I forget about big and small things that do and don't matter. However, I struggle with what I can and cannot do -- can I drive, do my own meds, teach my children? Please don't weigh in unless you are sure you know the whole story and most of you don't. I've had plenty of people tell me I'm fine to drive -- glad I look fine, and it would be more convenient -- but I'm the one (along with SuperMan and DDoctor) who has the whole picture.

I asked Bill for one word to describe me, because after all -- who knows me better than SuperMan. He said "content" and it's fitting...I'm content with my life, I'm happy and joyful generally regardless of the circumstances. And I have peace with God and am unafraid to die -- which by the way, is not the same as wanting to die right now. But I'm human, I'm bitchy sometimes, and I have my days. I'd appreciate no judgement -- but I know there will be plenty. I get it...if you really put yourself in my shoes, you'd have to admit you're invincible, too. Because one day, I was fine...and then I WAS NOT!

And these are the ramblings of a loopy mind with no narcotics on board...For now, I choose life, I choose joy, I choose love, I choose the rollercoaster, zoo-like life I lead. View this whole blog as a rant of a crazy mind if you wish -- but it helped to get it out there.

I'll end with saying that Isaac today noticed I'm not coughing anymore. Big achievement considering the lupus had hit my lungs, which wasn't pleasant. My 8 year old said, "You're getting better, Mom. Your life used to be a bumpy road, but now you're on a smooth road -- it's like a sandy, beach road now!" Well, I love that little guy and can't believe how insightful he is. So, here's looking forward to a smooth road, an ocean view for a while, and maybe a little less puking all around:-)

Much Love,
Michele