Do your worst first

Ever have one of those days where your to do list seriously outweighs your energy level? Well, thanks to Lupus, that describes most of my days. I'm so grateful my Mom taught me to do my worst first. I'm also grateful to Lupus for pounding the lesson home.

You see, on those kind of days, it really pays to do my worst first. I go through my list of to-do's for the day, select the one I'm dreading most and tackle it while I still have the energy to do so. Then I work my way through the list, always doing the worst of what's left first, thus saving the best (easiest) task for last.

By the end of the day, when I'm winding down, all I have last is a few 5 minute jobs that match my waning energy level. Now, my Mom was one smart lady. But I bet she didn't know how much she'd be helping me later in life when Lupus started pummeling me.

But here's the thing. Even if you don't have Lupus, or another chronic illness, my Mom's advice is relevant and useful. Because, let's face it, who wants to do their heaviest, most physically and mentally exhausting task at the end of the day when they're worn out? And who wants the mental burden of having those difficult tasks hanging over their head all day, bringing their mood down?

As you might have guessed, I'm having one of those days. Thus, the thought prompt that caused me to share this with you. And so, thanks to Lupus, I'm now off to do my worst. First.

Redefining the "D word" treat

Enough said?

When you decide to have your favorite treat after being good for a long, long time and it backfires on you, maybe it's time to start redefining what a treat is. Oh, Lupus, you are so good to me. You even remind me that treats aren't really treats. Because the long term effects of eating badly become instant Karma for those of us with Lupus.

Yesterday, I bought my old favorite taco flavored chips. You know the brand. Starts with a D. Yup You guessed it. They were delicious, I admit. A true guilty pleasure, at the time of consumption. Not at all vegan, either. I feel like shit for that. Plus, I overindulged a bit. Now, if I didn't have Lupus, it would have been a normal serving. But with Lupus, half portions are a necessity. So, a normal serving is too much for me.

So, last night was not a treat at all. In fact, it was such a bad night that it had me Googling (Sorry for the TMI) but it had me googling foaming vomit. And as it turns out, these particular chips are famous for that particular symptom.

Gross!

Lesson learned. What may appear to be a treat and what actually IS a treat in both the short and long term sense are two different things, yes?

But it's not just the one thing. Is it ever, with me? This experience really got me thinking. What other treats aren't really treats? What other long term symptoms am I giving myself when I overindulge or even just plain indulge my taste buds?

The long term health effects of consuming junk food “treats” are overwhelming aren't they? But some treats don't just harm the body, they harm the mind, the spirit, the soul and yes, sometimes even our relationships with others.

For instance, we ran into some family members last night and I was so sick that I couldn't even carry on a conversation. Not a treat. Not at all. For them or me. My stomach was rolling hard. And I probably hurt their feelings because, of course, I'm not going to burden them with my pain.

But that's not all those “treats” do to us. Thinking deeper still, there is a huge environmental impact, unnecessary resource usage and harm to human and non-human beings as a result of their production. Wow, just wow!

Yup. It's time to redefine the word treat. Because destroying myself, other humans, other animals and the earth is not my idea of a treat.

I'm lucky I have Lupus. Most people don't get an instant Karma reminder that junk food is bad for you. With most people, it builds up in their system until they keel over from a heart attack or some such. So, thanks for the swift kick in the gut, Lupus.

You are loved.

Here's to guilt free living

OK. So, the title might sound a bit selfish if you don't know me well. But one of the very best things Lupus has brought me is permission to give myself a break from guilt. Those who know me well, know that I constantly try to better and one up myself. Do more. Clean more. Get more accomplished. To which I am starting to stay, “Enough is enough! I'm not superwoman!”

Luckily, Lupus came along to suggest that sometimes, doing better means giving myself time for the really important things in life, rather than trying to do it all and feeling guilty when I can't.

Feeling responsible for “fixing” every little thing that happens to everyone I love and care for is ridiculous. After all, I'm only one person. I can't possibly do it all. Besides, the real fix happens when they learn to stand on their own two feet!

Empathy is one thing. Taking responsibility for absolutely everything and everyone around you is quite another. I'm done!

My house is far from dirty but still, I no longer feel guilty for that one unwashed plate sitting next to the sink or the fact that it's been 2 weeks since I dusted. The dust bunnies will still be there tomorrow. And it's perfectly OK to sit in my bathrobe for an hour or so in the morning, working up the energy to... well, work.

I am vowing to no longer feel guilty when the grand-babies cry and I get a good night's sleep. I had my turn at sleepless parenting nights. It's someone else's turn now. I need the sleep with this illness raging through me. But even if I didn't, I won't always be available. It's time to let others grow strong through their own experience and struggles.

And yes, it's hard to hear them cry. But if their parents don't have another option, they'll be OK, right? Of course they will. Because they love them every bit as much as I do. Problem is, I am too quick to step in. It's an easy out and what parent doesn't need an easy out sometimes? I know I would have jumped at the chance to have an hour of quiet when I was raising mine. LOL

Naturally, I will still be there to help occasionally. I'm not a monster. Just maybe not every time, you know? Because kids need to learn to rely on their parents. And how will that happen if Grandma is always their “go to” comfort zone? It won't.

Lupus is good for me, you guys. I'm too much of a helper. Been that way for far too long. I've paid my dues, so to speak. There's no reason I should feel guilty for not feeling guilty. Because, how crazy is that? And yet, without Lupus reminding me that I'm not the be all, end all fix for everything that happens around me, that's exactly how it would be.

So, thanks, Lupus. For giving me “permission” to live relatively guilt free for the rest of my life. I earned it and it's time for me to focus on healing and happiness. I don't need to be a hero to show my love. In fact, thanks to Lupus, I now see that it's actually just the opposite. Letting other people solve their own problems is much better for them and much more loving.

Bye bye guilt, hello helping myself and allowing others to do the same. I earned that shit and I'm embracing it!

Thanks for the alone time, Lupus

I know. Some of you socialites out there might interpret this as a bad thing. Alone time might be lonely time for you. For me, it's just the opposite. Due to my antisocial nature, Lupus gives me the alone time I need to regenerate. It's something that I never really got before I was sick.

You see, in addition to being antisocial, I also feel other people's pain and suffering more deeply than most people. Not bragging or complaining here. It just is what it is, Which, of course, necessitates that my problem solving and worrying extends to them. My over-thinking, over-analyzing brain really gets a workout around other people.

So, when Lupus keeps me up all night, I rejoice for the alone time. Not only that, I sleep most of the day the next day. Which means I miss everyone else's struggles for a day. Then, the next night, guess what? I'm not tired. I slept all day. So again, I get a few extra hours of alone time while the rest of the house is asleep.

I can't do housework or anything else remotely responsible because I'd wake everyone up, so there's another bonus. I get a break from being that person who takes care of everything that no one else wants to do as well. Ahhh, alone time. What a multi-faceted joy!

And it's OK, you guys. It really is. Even if the reason that I'm up all night is pain. I have found that if I focus on the benefits of Lupus, I'm a much happier person than when I dwell on the bad stuff. I'm also, by getting the time I need to rejuvenate, a lot easier to be around when I do have to socialize.

Guess what else? Being up all night isn't the only way Lupus gives me alone time. You see, I pretty much have to stay home. OK, so maybe it's because of a lot of extreme unpleasantness, disgustingly horrid symptoms and the general personal unreliability that Lupus causes. However, as I mentioned, I was way too reliable before anyway.

So, while all the healthy people in the house are off working or living their lives, I get to be alone. Oh, by the way, don't stress about me. I have days where I feel well enough to have fun too. But I never, ever have to go to work, unless you count housework. So, I spend most of the day in forced retirement.

And yes, I get bored and tired of being so wracked with pain and so physically limited. Of course I do. But like I said, the secret is to focus on the good things Lupus has brought me. Like the ability to take it easy without guilt, when absolutely necessary.

I'm working on not feeling guilty about taking time off when I'm feeling well. That responsibility thing is deeply ingrained in my soul. LOL

So, anyway.... Thanks, Lupus. For giving me time to just be alone with my own thoughts and issues. Because goodness knows, those are overwhelming enough without adding anyone else's to the mix.

I never said, I was perfect. Just grateful.

One step at a time to the max

The other night, Gary and I were discussing all the many, many things we still have to do to our fixer upper. He says for me not to worry, of course, because he's a great guy. Then he says, you know, we'll just do it one job at a time. I laugh. Because I have no choice of course.

Ha! When you suffer from chronic illness, pretty much everything is taken one step at a time. Including steps. In fact, I'm pretty sure most things have to be done that way. At least they do in my experience. Plus, there are the little issues of needing to rest more often and just plain not being capable of doing everything other people are.

You guys, one of my hands is now literally a claw. My fingers are curled up like their natural duty is to grasp branches. What the heck am I supposed to do with that? Not much, as it turns out. Can't scrub. Can't pull weeds. Can't even push my hair out of my eyes some days.

But hey, there has to be a benefit, right? This is the Lupus love blog, after all. I have to find some reason to be grateful. So, here it is. I have a perfect excuse to not do the things I can't do. Unfortunately, most of the time, that's more annoying than it is a reason to rejoice. That's because I've always been kind of a workaholic. Getting it done is who I am.

So, though it may not seem so on the surface, there is a hidden benefit to having a claw for a hand. I did spend a lot of years doing everything. And I've still got a lot on my plate. So there are some days when my forced laziness is something to be happy about. I get to rest, guilt free. Which is something I've never done before.

Now, if I could just get the other people in the house to take over all my duties before the whole house falls down around us.

Oh well, one step at a time. LOL

I wish people were like Lupus

This wheelchair is in my near future, you guys.

Still, I don't complain about my illness much and for good reason. It challenges me. It keeps me humble and it also teaches me what's important in life. It feels my pain. It empathizes with me. I do, however, have a complaint about people who have no such appreciation of their healthy lives.

I get up early in the morning with a smile on my face. Every day. I listen to the birds singing and feel so lucky to be alive. When it rains, I breathe the clean, moist air in deeply, rather than complain that I can't get outside. When it snows, I watch the flakes fall with admiration for their beauty. There is so much to live for. So many happy memories to make. So many awesome people in my life.

And yes, I also struggle.

I struggle to get in and out of the bathtub. I spend hours sitting on the toilet, not by choice. (Sorry for the graphic picture in your head.) I struggle to go up and down the basement stairs to and from the laundry room. I do all the housework, despite having extremely limited mobility. I crawl if I have to. Git 'er done. LOL

I have watched my young, beautiful body morph into something I'm not even sure a mother could love. I look in the mirror every day and see someone I don't recognize as myself. My hands are transforming into claws, my face is puffy and distorted and my limbs are so inflamed that it appears I am fat when I'm actually not. My skin has no elasticity at all. It just hangs there, taunting me because I know I'm stuck with it, no matter how in shape I get. It's not going away. Ever.

Sometimes I don't sleep all night, due to the overwhelming pain. Instead, I pass out in my recliner from sheer exhaustion during the day. But only after I have taken care of all my responsibilities and quite a few of everyone else's. I am determined to be an asset, not a liability.

When people ask me how I am, I don't burden them with my hundreds of horrendous symptoms. I use the times when I don't feel well to make sure everyone else is doing OK instead. I am sincere in my concern for others. I keep an open mind and an open heart, despite my limitations.

But unfailingly, unfailingly, you guys, someone always comes along to ruin all the enthusiasm for life I have worked so hard to maintain by bitching and moaning about some inconsequential matter.

I am literally sick to death of young, healthy, vibrant individuals complaining about every little detail of their lives. It pisses me off. There, I said it. Ya, it pisses me off that these people do not appreciate what I would give anything to have.

I can't work. I can't eat properly. I can't walk up a flight of stairs normally. I can't sleep. There is not a minute of my day that is not filled with pain and suffering. I look like absolute shit. None of that is going away. None of it is within my control. None of it. And they're upset to the point of losing their tempers over the tiniest problems one could imagine.

Oh, poor you, your favorite coat is in the wash. What? That's just horrendous. You're out of milk for your cereal? Perish the thought. You have no time for yourself? What a shame. Join the club. Because in case you hadn't noticed, no one else does, either. And some people have your kind of struggles on top of being sick on a permanent basis. I'm one of them, but I'm not the only one by far.

In other words, suck it up buttercup, life is not a bowl of cherries. Everyone struggles. There are people who don't know if this is their last day on earth and you're screaming mad because your socks don't match? Get over yourself. Get on with life. Slap a smile on your face and appreciate the fact that you're healthy, would you?

Every day, I am thankful that I am not one of those people. I am thankful that Lupus has shown me that pettiness is a moot point. But ya, I'm still livid over spoiled, self centered, perfectly healthy people who don't know how good they have it.

Appreciation. Get you some!

When sick is normal

You know, at least, as I've said before, Lupus is good for a laugh. It cracks me up when people ask how I am. Not in a rude way or anything like that. It's just that when sick is the norm, one simply does not know how to respond to that question.

So, I generally just literally laugh out loud (I'll explain why in a minute.) and say something like, “Meh, I'm OK, I guess.” Because no one wants to hear about anyone elses aches and pains and it's the polite thing to do.

But, if I were to be dead honest, to the best of my ability, it would go something like this:

“Well, today, it's just my usual overwhelming daily pain, whereas, yesterday, I had exploding diarrhea and the day before, I couldn't move my hips to get out of bed., so I guess, in comparison, I'm dandy.”

But of course, I'm not going to say that. It's rude and I'm not. Hence the laughter at the thought of it.

There's something else that makes this all amusing to me too though. Something else that makes, “How are you?” a humorous inquiry when sick is normal.

It's that I couldn't answer that question accurately, even if it was polite to do so. Because, you see, I actually have no idea how I am. Ever.

When you're chronically ill, you can feel perfectly “normal” or even much better and not be aware that your body is secretly plotting your destruction behind your back.

You can also feel like crap and have all your tests come out the best they ever have.

Now folks, I get it. Really I do. My loved ones, friends and even acquaintances who politely ask about my health and are just concerned. I appreciate it. I value their friendship. I do. More than you know. But when sick is normal, “How are you?” is just such an ironically hilarious question.

I know. Funny/Not funny. But me? I choose funny over desperate, desolate and whiny. Because, let's face it, when sick is the norm, those are pretty much your choices.

I hope that I never lose my sense of humor, no matter how normal sick becomes. And thanks to the twisted chuckles I get from Lupus, I probably won't.

Doing it with Lupus

Doing it can be a real challenge when your joints look like this!

Not that kind of doing it, silly. Although, I suppose what I'm about to tell you could be applied to the bedroom as well. But what I mean is do it like in “Just Do It”. You may not think it's possible, in all instances. I'm here to tell you it is, with a few concessions, of course. To be honest, there are quite a few things that come under the I just can't description with Lupus. Still, I do and focus on what I can do in every situation, every day.

I can keep the house relatively sanitary. Although I may have to sit down much more frequently than someone without a chronic illness, I can still do things like laundry, dishes, sweeping, mopping, etc. And sure, there may come a day when I cannot. But as long as I can, I will keep it up. Because otherwise, I feel like I'm letting Lupus win and that just won't do.

It hurts when I type sometimes. I have severe Rheumatoid arthritis in my right hand, caused by Lupus. I have it all over, actually, but that hand is killer. I play a game called type a bit, massage hand, type some more, repeat. But folks, I love to write so I just keep plugging away at it.

I garden too. Conventional gardening is pretty much out now. Bending repeatedly is not in my Lupus repertoire. So, I have raised beds. I built them with my grand-daughter the second I realized that gardening conventionally was becoming a problem. I also do some bucket gardening.

Doing just about anything with Lupus and the other chronic issues that I have requires some changes, but that's OK. At least I can still function, albeit, a bit abnormally. Abnormally, after all, beats the hell out of giving up and waiting for death to take me.

Folks, if you have Lupus, or some other crappy, pain in the butt condition, don't give up on moving altogether. Don't give up on your hobbies, hopes and dreams. I know that you may not even be able to do what I can do. That's OK. Do whatever you can do. Even if, particularly on those bad days, it's just to wiggle your toes while you watch TV.

After all, just because you have a chronic illness, well, that doesn't mean you don't deserve a happy, productive, fulfilled life.

And thanks to your chronic illness, Lupus or otherwise, I'm betting you know just how precious life is!

The many faces of Lupus

Let's be honest for a second. Having Lupus sucks. Unless you're into having your good health turn into your worst nightmare. It hurts. It really, really hurts. I didn't cry when I gave birth to my children, people. With Lupus, I cry every day., privately, so as not to worry the people I love. 

Now you might be thinking, where is the good in that, Jaipi? Are you off your rocker? Well, yes I am, but it has nothing to do with Lupus. I've always been a bit wacky. There are, however, lots of good things about my Lupus journey. Yes, there is pain, but there is also healing.

I've learned to lay in bed longer, let other people help me and pamper myself.

I have no choice, of course. Still, these are things I have never experienced in my life. I've always been the responsible one, the meal maker, the trash taker and the lawn mower. For the first time in my life, I can relax and not feel guilty about it. The pain is no joke, of course. I still wish I was healthy again. But I've learned to put myself first. If you knew me, you'd know that's quite an accomplishment.

I get to NOT have a boss for the rest of my life.

That's something the independently wealthy and the chronically ill have in common. We're both on a permanent vacation. I'll admit, if I had a bit of money, and good health, it would be a much better vacation. Still, there's something to be said for not having to be anywhere unless you want to.

And as for that boss thing, well, I've never been much good at towing the line. Now I don't have to. Ever again. (This is where I visualize myself giving all my old bosses the finger and telling them to take their stupid jobs and shove them.)

I know who my real friends are now.

They have stuck by me through all of this nonsense. My partner is the best. He goes out and works his own job every day so I can heal. He helps me into the van when I'm having a bad day, just so I can spend time with him and forget about the pain. He puts up with my tossing and turning all night long without a word of complaint.

He's my rock in a sea of awful. My family helps me with whatever I can't handle myself whenever they can. Even my online friends cheer me up with their silliness and send me hugs and hearts on bad days. And guess what? Some of them are fighting their own chronic illness battles. They have their own pain to worry about.

I have great empathy now.

I know what it's like to have to crawl to the bathroom, or scream in pain just from lifting your arms up to get dressed. It's a humbling experience and one that makes you appreciate the struggles of those who aren't so lucky. What, Jaipi? You consider yourself lucky? Absolutely! I'm alive and breathing. I'm surrounded by people I love and cherish. I've found a whole new way of living. I'm eating right. I'm taking care of myself.

But most of all, I've learned to cherish every single minute of my life. I've learned to smile through the pain and heartache. I've learned to treat people better than they treat me. Who knows what they're going through? Plus, I may not have much time with them. Better make it count.

So, you see, Lupus is a big fat pain that's not going away. But it's also a blessing.

There is good in everything and everyone, if you know where to look. Enjoy your life, my friends. Don't waste it on things that don't matter. Tell your cranky boss goodbye, but don't give him the finger. Remember, you don't know what he's going through. Find a job you love. Do right by the people you love. But take care of yourself too. Let other people help you. Appreciate your loved ones. And by all means, stop to smell the roses. Life is short and health is fleeting, my friends. Live well!

Lupus relieves me of deadlines

You know, I've never been a big fan of schedules and such. I'm pretty much a go at your own pace kind of girl. I made good money in the past by writing for private clients. I don't regret it. I even liked it. But there was something about it that didn't suit me. It was the deadlines.

For some reason, things that I have to do, just don't jive with my personality. I'm a free spirited individual in every sense of the word. Oh, I can tow the line with the best of them. I'd just prefer not to. It's too constricting for me.

Thankfully, Lupus makes it impossible for me to meet deadlines or keep a schedule. I know. For some people, that would be aggravating at best. But for me, since I'm just not that into doing things according to someone else's dictates, it's actually quite liberating.

So, thanks Lupus. For giving me my freedom! It's something I haven't had since, well, ever. In fact, I would jump for joy, but you know.... Lupus. It's a double edged sword.

Would you believe that my garden loves Lupus?

Plants are healthier when gardening with Lupus.

It's not even a stretch. Seriously. It's not. You know how I always tell you guys that with Lupus, I have to garden a certain way? Well, as it turns out, the way that I have to garden with Lupus is actually beneficial to my garden. Who knew?

Well, OK, I did. But it's all about making the connection so bear with me. LOL

Gardens love it when you water them early in the morning and/or late at night. And with Lupus, I have to do just that. I don't really have a choice. The sun and Lupus are not friends. So there you go, Lupus forces me to water at exactly the time that's beneficial for the garden. Ha!

Having Lupus also means that I cannot let the garden go at all. If I do, it would take way too much work to get it back. With chronic illnesses, it's all about one day at a time and not overdoing it. I just simply cannot overdo it. If I do, I will pay for it big time.

Of course, my garden responds well to my being so attentive. It doesn't know that I have to, but still, it's happier because of it. LOL

The garden especially likes that I keep up with pulling the weeds that choke plants or steal their nutrition. And I like it too because if I didn't, weeding would require a lot more strenuous work.

Lupus does not like chemicals. Boy, does it ever not. Exposure to anything unnatural brings on flares from Hades. Even some medications will have that effect. So, naturally, my garden is natural. That is to say that the food I produce is chemical free, thanks to Lupus. And that makes for happier future gardens too.

#NoHazardousRunoff

So, thanks, Lupus, for forcing me to garden the right way. And my garden thanks you too!

Lupus helps me fill the writing queue

Lupus fuels my thought train!

Obviously, this blog wouldn't exist without Lupus. So that's one thing. But it isn't just about this one blog. There's quite a few ways Lupus inspires me to write more and better.

I've mentioned time before in these posts. I don't have as much of it as some people. That means less time to write too. Which in turn means, I better get on it, don't you think? Lupus gives me a sense of urgency greater than most. Thank goodness too, because I'm becoming a bit of a procrastinator lately.

Late night pain and other symptoms could leave me up all night bellyaching, moaning and groaning. Or, I could use the times when I don't feel well to write. Like I'm doing right now. That's right, if it weren't for Lupus keeping me up with stomach issues, this post never would have happened.

Life's experiences have a way of becoming writing material, don't they? My experience with Lupus often prompts me to write. It engages my brain, which makes it more likely that an inspiring related thought will come my way.

It's not just related material that springs from having Lupus either. Thought trains have a way of traveling far from the station. So, a thought that begins with Lupus may inspire a blog or article on a whole other subject.

So, thanks, Lupus, for giving me something to write about, a sense of urgency, midnight brainstorming sessions and a runaway thought train fueled by Lupus inspired steam.

My Lupus journey brings hope to others

Sometimes the road is rocky and you grow from it.

That's the whole idea of life, isn't it? It's so hard, whether or not you have a chronic illness. That's why we have to lift each other up, share our positive experiences and just generally do our best to look on the bright side. It's also why I choose to share my Lupus journey with others.

But how does that give people hope? Well, by showing people that they can continue to live their dreams, even when they're ill, of course. Which I do. Which they can too. And of course, there are obstacles to face and work around. For instance, since I love gardening, but Lupus does not love the sun, I use an umbrella, work before the sun comes up or both.

And sure, it's not the same, once you have a chronic illness. It does totally suck sometimes, to put it mildly. But what I would like people to know is that you can't let it bring you down. You have to keep smiling and keep doing the things you love, even if you have to do them differently. It's OK. Because the alternative is making yourself miserable by dwelling on the bad stuff. And who wants to be miserable? Not me.

So, if you're sick like me, or even if you're not, I hope that by telling you all the positive things about having Lupus or another chronic illness, I'll help you to smile and laugh more, cry less and stay positive. Because staying positive is not just a catchy saying. It actually keeps you healthier and happier.

Thanks Lupus, for giving me the opportunity to help others through my story.

Lupus improves my diet

Lupus only lets me eat the best of foods!

Oh, Lupus, you are a clever girl. You even help me eat healthier. You make me pay dearly for falling off the wagon every time. To the point where I think twice before having that second helping or eating anything that contains empty calories. And if it's bad for me? Just forget it. To put it as gently as possible, putting anything bad in me is pointless because it just doesn't stay in.

I am rarely tempted to have soda pop any more. Lupus rejects it in the form of acid reflux. Yup, it's not staying in there, so why bother? Lupus also reminds me not to consume too much salt. If I do, my legs swell up like balloons and hurt like crazy. In fact, just about everything I do that's bad for me has instant bad results.

And that's important, right? Because most bad habits have eventual results. But with Lupus, I know right away that I have made a huge mistake. And since I feel the effects right away, I'm more likely to avoid them.

So, thanks, Lupus, for making it obvious what I should and shouldn't eat, in no uncertain terms. It keeps me on track!

Giving a shout to being out and about

I like to move it, move it. Or not. But with Lupus, I really don't have a choice but to get up and be out and about. Huh? Yup. It's certainly true that people with chronic illnesses need a lot of rest. However, the real secret to feeling better is to make sure you don't rest all day, every day, unless, of course, it's one of those days where your illness simply won't budge or let you budge either. I know. It happens.

But for the most part, staying completely sedentary when you have a chronic illness is extremely bad for you. It makes things a thousand times worse than they already are. It's all about balance, as they say. The phrase, “move it or lose it” comes to mind and into play here. It's absolutely true. When I was writing full time, spending long hours at the computer, this disease had a very firm hold on me. Now that I make an effort to get up and get going when possible, I'm feeling much better on a daily basis.

Occasionally, I start feeling crappy again and realize that I've been writing too much and sitting too long. I am notified by Lupus that it's time to do something else. Yes, that notification usually comes in the form of pain, swelling and digestive issues, but hey, at least Lupus is nice enough to give me a sign before it's too late!

So, thanks, Lupus, for giving me the nudge to get up off my not so royal hiney. Because doing so insures that I will have a few extra years with the people I love.

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.

I always have meds when I need them

Don't worry, these are not mine. That's a lot of meds, are you kidding me?

Ya, I know. Prescription meds have their bad side. And they can be abused. So don't worry, I don't abuse them. But they can also save your life or at least save you a trip to the ER, like they did me last night. You guys, I have no idea what I did but Oh my, ouch!

My left lower shoulder blade was so bad last night that my daughter texted me from the basement to see if I thought I needed a doctor. Apparently, she could hear my moaning and groaning mixed with the occasional outburst of, “holy f*** this hurts, please make it stop!” from all the way downstairs.

Now, usually, I am very quiet about the pain because I don't want to be that complaining whiner that never shuts up about how sick she is. You know? But last night was a doozie. It was beyond the grin and bear it point. Like, way beyond. Like, right about at the “Crap, maybe I DO need a doctor” realization.

But thanks to Lupus, I was able to take some of the extra prednisone I have for just such emergencies and knock that pain out of the ballpark. Well, first I took a couple aspirin to see if that would help. It didn't. So, if not for the extra prednisone Lupus provides me with, via my rheumatologist, I probably would have had to go to the ER last night.

I also have on hand, several unexpired pain meds that have been prescribed to me from time to time. I rarely take them. I'm just not a dosing fool. Plus, I figure that since I'm already on a maintenance dose of prednisone, I shouldn't really be quick to add too much to the mix, if you know what I mean. Anyway, if I have a serious issue with pain, they are there if I need them, because I always fill them, even if I think I'm not going to take them. Hey, you never know when you'll be faced with a zombie apocalypse, right? Might as well be ready for anything.

Now, you might say that I shouldn't be thanking Lupus here, because Lupus is the reason for the pain in the first place. But you know, not all my pain is Lupus related. Some of it is from the rheumatoid and some of it is because I try to be this bad-ass that I'm not. In other words, I overdo it sometimes. No lectures please. I'm a do-er. That's who I am and it's not going to change. Plus, sometimes it's good for me. Staying active is vital to longevity when you have a chronic illness, or even when you don't.

And I do rest in between kicking to-do list butt. I promise. Ha!

So thanks Lupus, for giving me the power to stay out of the ER with surplus meds. Because who wants to run to the ER every time they have an ache or even an extremely painful explosion of epic proportions? Not me.

Lupus let's me be sick anywhere

With Lupus, I'm sick wherever I go. Photo by Jeanne Frost (Jaipi Sixbear) all rights reserved.

Well, that's depressing, isn't it? No. No, not really. Let me start over, though. You see, with Lupus, I'm sick no matter where I go, what I do, who I'm with, etc. But hey, at least I have time off, right? At least I'm in what I like to call, “forced retirement.” Which means that unless I'm so sick that I have to sit in my recliner all day (which does happen quite a bit) well, I can do whatever I want.

Sort of. I mean, I'm no millionaire, for sure. And it might hurt me a little to do certain things. Others, I may not be able to do at all. Now, this is getting depressing again, so let me get to the point right now.

And the point is that I can be sick and home bound or I can be sick at the beach, in the mountains, at The Grand Canyon, where I hope to go soon or at The Great Sand Dunes, Mesa Verde or even on vacation back home with my family. So, why should I choose to be sick at home when I can get out there and see the world? And here's where the love for Lupus comes sneaking in.

Oh ya, I'm really sick. There is no way that I can be a reliable employee or even be reliable at writing, painting, photography or anything else that I enjoy. But what would I be doing right now if Lupus hadn't descended on my life like a dark cloud? I'd be working, of course, like everyone else in the world has to in order to survive. I wouldn't have a choice. I never did before, either. But now, thanks to my awesome boyfriend and Lupus, I can do the things I never had a chance to before.

Because I will be sick anywhere and no matter what I'm doing. I can't do anything about that. So, gosh darn it, I might as well do the things and go the places I want to. And yes, I'll still have the dizzy spells, the pain, the indigestion (to put it mildly) and all the other craptastic symptoms Lupus throws at me. But at least I'll be experiencing them in beautiful places doing beautiful things with my life, albeit, a bit slowly and with some limitations.

For instance, last year, I went back home to see my extended family. I always go on a boat tour while there and this trip was no exception. And sure, I wasn't feeling my best that day, because I never am. And sure, I fell asleep during the tour, but hey, it's OK. I got to spend some time with my family, even if I did fall asleep. Maybe it wasn't what most people would call “quality time” but it was precious to me. And I think I looked pretty in the pictures because I was happy. And I wouldn't have been there if not for Lupus. I would have been working.

Yes, Lupus makes me sick wherever I go. Still, thanks Lupus, for the freedom to be sick in wonderful places, doing wonderful things. There's always something to be grateful for. Always.