And that’s how you NINJA kick Lupus in the ass and take back your life…

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PERSPECTIVE – some times you’ve got it in spades, and some times, it’s so easy to loose. And some times, it hits you at the most profound moments in life – moments that make you just want to cry for the shear simplicity of it all.

And that’s what this blog post is about. If you’re looking for something funny today, come back tomorrow. This one will hit you right in the heart – in that place between love and heartache….if you stick through this entire post, I promise you, it DOES have a good ending.

So, my daughter has Lupus.

It’s really hard for me to say it out loud, as at times, I feel if I say it out loud, I am giving it more life than it deserves. But, it’s a fact, and the worse part of it is, I’m not the one dealing with LUPUS. My daughter is. My sweet little bundle of hope and joy. My baby!

She’s 16 now, and she’s been living with it pretty much her entire life. She was diagnosed with it at age 5. Lupus is one of those chronic diseases that can take away your ability to enjoy life, and at times, your will to live – on certain days. But on this day, it gave both my daughter and I, a much needed PERSPECTIVE. And HOPE, and a will TO LIVE.

If you already know what Lupus is, skip this paragraph. For those of you who don’t know what Lupus is, it is an autoimmune disease. What that fancy term means is that the body’s immune system is OVER active. Where as normal bodies have immune systems that attack foreign bodies like viruses and germs, the bodies of LUPUS patients, the immune system starts reacting and fighting things like your own skin, blood cells, liver, eyes, etc. You know how you feel when you have the flu? Add that achy, sore, exhaustion you feel during your bouts with the flu to that groggy “I’m walking through peasoup and I have no idea what is really going on” state of mind and THEN add the most debilitating rheumatoid arthritis pain you can imagine, and THAT is what a Lupus flare-up feels like. x 10.

We’ve been battling a very intense Lupus flare-up for about 2.5 months. So, since the beginning of her Junior year of high school, she has been feeling like CRAP. And not only from the flare-up. The side effects from her treatments are sometimes worse than the disease itself.

But not today. And not yesterday either. In fact, for the first time in 82 days, my daughter has had 5 days in a row feeling “like normal” again. Feeling like you & I do most days. Pain free, totally coherent, with plenty of energy to spare and enjoying every single moment of it.

So, to celebrate, we had a mother-daughter weekend. To kick off the celebrations, we had brunch at a local diner.

Daughter: Mom, I think God loves me. I mean, I really feel like God loves ME.

Me: (a little bewildered, we’ve never been a very religious family, and I can’t even remember the last time we went to church…): How do you mean?

Daughter: Well, I’m not saying that I’m glad that I have Lupus or anything, because that would be TOTALLY crazy, but I AM kinda glad that it’s given me the perspective that I am having right at this moment.

Me: OK. Go on…

Daughter: Well, I am feeling like “normal” again. Like “me” again, and all I can think of is, this feels GREAT. I am so thankful to feel so wonderful!

Me: You are so wise beyond your years, daughter. I love you.

Daughter: Please don’t cry in public mom, or I’ll have to stop talking to you and walk away. I WILL walk away mom.

Me: (sniffle) OK. I promise.

Daughter: OK. You know, I feel like I’m 30 years old trapped in a 16 year old body. All the drama of being a teenager seems so irrelevant when I am feeling this good RIGHT NOW.

Me: You are SO TOTALLY 30 in a 16 year old body. Actually, I’ve always believed that you are an old, old, very wise soul. Much older and wiser than me!

Daughter: I mean, *like* OMG. I’m actually really happy that I have Lupus, because it’s like a superpower that I have that makes it easier for me to see through all the bullshit. I mean, if I’m going to feel crappy some of the time, when I’m feeling this good, I don’t want to waste it on bullshit. – You know? I mean, you know – I have been wanting to have a boyfriend for a long time know. And every time I think someone is perfect for me, I see them do something that it just *TOTALLY* disrespectful to me or to women in general, and I think “I don’t want that.” FOR REAL MOM. I don’t have time to waste on fucking losers. AND, the best part? I’m not frustrated that I can’t find someone. I mean, I am a little bit frustrated. But I’m not frustrated with myself. I don’t blame myself, and I don’t lower my self esteem or lower my standards just so that someone can meet that lower standard. I’m more frustrated with the quality of boys out there, mom. You would TOTALLY roll your eyes and die if you knew how immature they are! UG!

Me: (totally speechless, and so proud of the 30 year old staring at me through 16 year old eyes.) Get used to it. Boys/men take a lot longer to mature than girls/women. You’ll have to find another old soul stuck in a young body.

Daughter: Lupus is like this superpower that reminds me, “Hey! Are you really going to waste feeling 100% on this total ZERO?” It’s so easy for me to see who my friends are. It’s so easy for me to see people’s intentions for what they are. And it’s so easy for me to move on and not feel slighted at how something may seem “unfair.” I haven’t got time to waste my good days on crying, complaining, or bullshitting. I’m feeling GOOD mom, and I have PERSPECTIVE mom, and THAT is a superpower that LUPUS gave me.

Me: You are so right. I was always hoping that one day, you would find some good in it, and I feared that all the pain would make you bitter and never see the good. I am SO PROUD OF YOU.

Daughter: Mom, stop worrying about me. I know that you worry that because I have Lupus, my options *might* be limited. Mom, you are right. My options ARE limited. But not like you think. It’s like this: we all have 100 options out there. There’s 40 good options, 40 bad options, and 20 so-so options. Well, with my LUPUS superpowers, I can see the 40 bad options without even blinking. So BAM. Right off the bat, 40% of the options are GONE. Because they were always bad options mom. I still have access to ALL of the good options!

MOM, having lots of options doesn’t mean that they’re all good options.

Having lots of options means you have to weed through them all and decide if they are going to be good or bad. With my superpowers, I only have the good ones and a few so-so ones to deal with. I’d say, that means I have a 100% chance of being happy and successful with very little bullshit in my way. I like those odds! And I’m not talking about boys mom. I’m talking about life in general. I am ready.

If I can deal with this Lupus shit mom, I can DEAL WITH life.

And that’s how you NINJA kick Lupus in the ass and take back your life.

You cut out the bullshit and you live life. It’s that simple.ย So simple, it hits you right in the heart – in that place between love and heartache.

She left me speechless – in a good way. And we spent the rest of the day chatting, enjoying the momentย and living life.

-Ninja BITCH, CEO

over and out bitches!

 

 

Comments

  1. Becca says:

    This is insanely awesome! I’m glad she’s on a streak of good days! I wish her all the best and hope they continue! I’ve been a server migraine sufferer since the age of 10, and while not as debilitating as an autoimmune disease such as Lupus, I totally understand what you both mean by actually have a streak of feeling normal, and not in pain, and just enjoying life to the fullest. Hope you and her get to enjoy many more “normal” days together!

  2. Becca: Thanks so much! We always hope that the good streaks are long and full, and the bad ones are short lived and forgotten. She’s very good about forgetting the bad, and now learning what we have learned, there is no reason to give “the BAD” any more time than it’s already taken. AND, we are learning everyday of ways to control the Lupus and maintain the good days. ((HUGS)) to you on your journey with migraines.

  3. Leanne says:

    WOW! Wow. I love this. What an amazing kid. My grandmother had Lupus, so I know all the shit that it is, but the grace with which your dear girl speaks of it, well… A Superpower to see throuigh bullshit! Awesome! Thanks for this. Glad to have found you. ๐Ÿ˜‰

  4. Laura says:

    Lupus is such a fucked up relentless disease. I hate it. I hate it with the burning white heat of a thousand suns. If I could I would throw lupus up against the wall and bludgeon it to death with a lead pipe and then when it crumpled to the ground I would kick it a couple of times and cackle as it died a slow death.

    I have dealt with (mostly) young women fighting this disease for 30 years and the sorrow of seeing them robbed of their youth will never leave me. It’s rare to see an adolescent dealing with the disease with such grace. I think this is testament to her mother. I hope she has at least 5000 more days of feeling good. Really really good.

  5. This is absolutely amazing. I live with chronic illness (ulcerative colitis) and I could relate to so much that your daughter said. But I’m almost 27! She is wise beyond her years, for sure. Thank you so much for sharing this story.

  6. Luke says:

    Like Lauren, I have ulcerative colitis. This really struck home. Thank you for sharing.

  7. Thank you so much for reading and commenting! I LOVE LOVE LOVE my online community. You guys make me feel NOT ALONE, and that’s a WONDERFUL feeling. Thank you!

  8. XLMIC says:

    She is totally and utterly AMAZING. Truly and completely.
    XLMIC recently posted..Jingle Bell Hell 2011My Profile

  9. Lauren says:

    I’ve commented before, but I just wanted to let you know that I have this bookmarked. I re-read it often and share it with friends, too. It’s just perfect.
    Lauren recently posted..When Training Isn’t FunMy Profile

    • Lauren – thank you so much for reading again! I re-read it myself after I got the notification that I had a comment, and it’s like I’m reading it for the first time – AGAIN. LOL. We’ve had many ups and downs with her Lupus this past year, and this little documentary of how she felt at THAT moment is so wonderful to come back to and read and hold onto when the times ARE tough.

      Thank you for that reminder!

Trackbacks

  1. […] thankful for this blog post. Honestly, if you do nothing else with your day today, go read And that’s how you NINJA kick […]

  2. […] Looking for some perspective? Check out this post that I keep bookmarked and re-read often: And That’s How You Ninja Kick Lupus in the Ass and Take Back Your Life. […]

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