The worst things about Lupus are actually the best

If you follow this blog, you may already know what I mean. If not, and this is not just because it gives me page views, give the rest of my posts a quick look. Notice how the pain, the shortened life span and all the other symptoms of this dreadful affliction help me appreciate life? See how the worst things about Lupus bring out the best things in me? Ironic, right?

When you're sick like this, no matter who you are, the benefit is that you start to see things other people don't. I'm not saying that sick people are smarter or more intuitive than anyone else. I'm just saying that because we have less time, it becomes extremely important to use that time well.

The hardest part of this illness, though, is when you watch your loved ones wasting time with petty arguments or stressing themselves out over the things they have no control of or even just simply not taking charge of their lives, thereby allowing their fate be decided by circumstance.

When that happens, Lupus gives me the courage to step in and let them know what's important. I try like crazy to do so in the nicest way possible. I don't want to interfere, ever. I've always been the kind of person that just lives and lets live. I've always felt that people should live their lives as they see fit.

But you know, Lupus has been around a lot longer than I have. It's older and wiser. Lupus knows pain and anguish better than anyone. And so, it insures that I speak up and help my loved ones see what it has taught me so they can benefit from it too.

So, here is a very incomplete list of what has truly hit home for me since this disease smacked me down a few years back. Oh, and yes, I “knew” all these things before.

But knowing something to be true and experiencing the truth are two different things, aren't they?

*The little setbacks of your day do not matter one bit in the scheme of things.

*Small joys are the stuff memories are made of. Cherish them fully and to the bottom of your soul.

*Anger and frustration are always temporary. Push past them! Don't let them rule your life!

*Only love lives on forever once you are gone. So, share those loving moments fully.

*Other people will disappoint you sometimes. People are not perfect, nor can they be.

*Remember also that your idea of perfection is not the same as anyone else's.

*Don't diss someone else's bliss!

*Everyone is beautiful in some way. Seek out their beauty, not their faults.

*Your life will never be ideal, so learn to appreciate it for exactly what it is.

*Appreciate the downs because without them, you cannot fully experience the ups.

*Spend your time wisely because you never know when it (and you) will be gone.

*In the end, family, friends and memories are all that matters in life.

*When you're gone, you will live on in the hearts of those you love so give them happy memories!

*Every step you take leaves a path for the next person, so leave gentle, compassionate footprints.

*Whatever it is that you desire, reach for it wholeheartedly and with passion.

*Cherish every single second you spend with those you love

*Create more seconds.

*Prioritize. Your job and your possessions will not miss you when you're gone. Put people first.

*Life is hard for everyone. Carry your weight so other people don't have double the burden.

*Happiness really is inside you and it's a choice. You create it.

*Create more joy and share it with everyone!

Today, I read a comment by a friend that I believe sums up what Lupus has taught me quite nicely. His statement was that beauty is everywhere. You just have to look for it. Isn't that just so true? And when I read it, I thought to myself that the best thing Lupus has taught me is the appreciation of all the people and experiences in my life. But it has taught me in the worst way, through the threat of having them taken away forever.

And that's the best lesson of all, isn't it? Concentrate on the lesson, not the source. Focus on the “good” and the “bad” loses it's power over you. Lessons are sometimes hard earned, but this life is always beautiful, my friends.

You are lucky to be alive to experience it all!

Love every moment, good or bad. Love every breath you take and everyone you are lucky enough to share it with. Life is the most precious gift you will ever receive. Don't waste it on worry, anger, fear and resentment. But most of all, make other people's lives better, however you can. It's the greatest joy you'll ever know!

In the middle of the night

Sometimes, it's hard to see the stars.

It's 2:00 am, Denver time, you guys and I should not be up but here I am. I'm pacing. I'm puking. I'm in extreme pain and I'm sick of this crap. I wish Lupus, Rheumatoid and my dysfunctional, damaged body would just knock it off. Seriously. And yes, I know. Be positive for positive results, yes? It's true. And I usually am. But the fact remains. This shit hurts like holy hell sometimes and you know what?

I think it's OK to say so. Not only that, I think it's OK for me to let people know when I'm suffering. It's not about making myself miserable. It's not about driving people crazy. I'm not bragging about my “special” diseases or making excuses.

It's about letting people know that I'm no longer someone they can depend on for help at a moment's notice so they can plan accordingly. It's about other people knowing why I'm quiet, sleeping so much, not thinking straight or can't take care of my responsibilities properly so they don't think I'm just some kind of lazy idiot.

And yes, I am fighting the good fight. I'm keeping a smile on my face whenever humanly possible. There is a song in my heart. I am determined to do my level best to live the most normal life I can and not cause anyone to suffer along with me.

But there's a battle raging inside me and it's trying to kill me. It's indescribably painful. It's horribly inconvenient and it's downright scary. And sometimes that other fight wins out over my perky little smile. And you know what? I refuse to feel guilty about that because it's not my fault.

I didn't ask to be sick. I'm not reveling in it. I'm just trying to deal with it the best I can. And I'm only human. So, some days, people will just have to forgive me if the knowledge that my life span is likely going to be considerably shorter than anyone elses makes me a little cranky. My imminent death is a reality I face daily. So, some days, it's pretty tough to smile.

People will have to understand that I'm going to complain when the pain gets so bad I can no longer pretend to be happy.

Life isn't a social media post, you guys. It's not inherently politically and socially correct, nor should it be. And some days, I just feel like screaming. And I will. Most days, I do what I have to do, despite the fact that every muscle in my body is having it's very own scream-fest. I don't say anything. I suck it up. I swallow the jagged pill and life goes on.

But I refuse to apologize for the days when my illness is so bad that I can no longer project positivity, be an inspiration or just plain function like a “normal” person. It hurts, you guys. It hurts so much that I can't even explain it and it's scary knowing that I could go to sleep and not wake up. Because that's the reality of chronic illness.

So please, just love me. Just try to understand that although certainly I want to be a cheerful inspiration, I'm really, really sick. And pardon my language, but sometimes I'm going to be a downright bitch, because this illness and trying to be normal is just too much for me. I'm not some kind of saint. I'm just a normal, average person trying to deal with several abnormal illnesses at once.

So, if I'm rude or distant, whiny or screechy, please understand that it's not about you, it really is about me and I'm happy about that. Because I would never in a million years wish this crap on anyone else.

The Lupus love is real, but I'm still kicking it curbside

How do I love Lupus? Let me count the ways while simultaneously squashing it flat!

By now, you all know how much I have learned to appreciate the lessons that Lupus has taught me. Likely, you also know that it's not all good. I mean, it is a chronic illness, you guys. It's not pretty for sure. In fact, in the last week, it's made me downright miserable and exhausted. So, don't think that just because I sing the praises of Lupus, I'm ignoring the fact that it could quite possibly kill me at any given time.

I'm still kicking Lupus curbside, for sure. I don't love Lupus so much that I'm ignoring it's ravages or not doing something about it. I see a rheumatologist regularly. I watch my nutrition. I get off my butt and move it, move it, move it so I don't succumb to a sedentary lifestyle. I take my meds. In short, I'm doing all I can to insure that I live as long as possible.

I have people who depend on me, you guys. I can't be dying on them or become so incapacitated out of sheer complacency that I can't function. I just can't. So, while Lupus has taught me some very important life lessons, I also totally get that I'd be better off without it. I just choose to look at the bright side.

That's just who I am. And I don't think I'm better than anyone else, either. Hey, everyone has to handle their life in their own way. I get it. It's a rough road, even without chronic illness. Staying in my happy place helps me, but if it doesn't help you, that's OK. I happen to think it will. But as they say, that's none of my business.... Ha ha ha

Anyway, ya. I'm still here in part because of my positive attitude. But it's also because I'm not afraid to sock Lupus right in the eye when needed. And believe me, I understand that there are people fighting chronic illness who are beyond the point where a smiley face will help them survive. Someday, I may be one of them. Who knows? I may lose my ability to smile one day as well.

After all, who am I kidding? There's nothing about dying to be grateful for, right?

Nah. That's not like me at all. I always find the good. In fact, I'll probably be on my death bed some day talking about how at least I won't have to wash the dishes or do the laundry anymore. Happiness. It's one chronic illness that I'm glad to be infected with.