With Lupus, it's my choice how I live or die

Lupus won't stop me from being silly or living well!

So, I have a chronic illness. I'm also at that point where I've realized that unless I take charge, I'm probably not going to get better. I was feeling that I had no choice in the matter. But guess what? I was so wrong! I do have a choice! Yes, even if the doctors insist on writing me off as a lost case.

I'm starting to realize that I can choose to live the rest of my life well or die miserable. I can choose to live, even if my doctor hands me a death sentence. Even if they insist that I take some horrendous medication which will absolutely kill me, whether it makes me well or not. I still have a choice.

I can even say no to my doctor. It's my life. Whether I live or die is my choice.

I have the power.

I can also do some research and try something else. I can live and die with zest and dignity and without chemical interference. I can create my own life right up until my life is over.

Now, before you go thinking that I'm in denial or refusing medical treatment, let me see if I can explain. I know that there's a chance this could kill me, positive attitude notwithstanding. But so what? I don't care. We all die sooner or later. That's not going to stop me from living or dying in my own way.

No one is going to tell me how to live or how to die. I have no intention of letting someone else make health decisions for me because they don't have to live the life they hand me. But I do! And I don't want to spend the rest of my life in fear or on medications that make my life a miserable experience. It's just not worth it.

So thanks, Lupus, for making me realize that everyone has a terminal illness. It's called life. And everyone should live that life exactly as they wish. With Lupus or without it.

Lupus inspires me to be less of a b****

Or does it? You see, it's just that when you go off on a raving mad streak with Lupus, you realize that in addition to being a b**** sometimes, you're also a bit of a drama queen. Lupus has a way of making other problems seem insignificant. Then again, the mood that being this sick puts you in can also make you quite hostile. This all prompts you to rethink your behavior and try like crazy to come out on the nice side of things.

Hopefully, that is. It's all a bit confusing for sure.

I've had some bad luck and demeaning people in my life. Well, OK, I've had more than a little of both. So much so, that I have gotten in the unfortunate habit of holding my feelings in while quietly suffering, then letting it out with a bang. Therefore, I alternate between being the nicest person on the face of the earth and being a complete and total jerk.

But then, Lupus comes into the picture. That empathy that I wrote about Lupus giving me, well, it's inspired me to cut down on those scary episodes. It's taught me to tell people exactly how I feel. Which admittedly sometimes turns into another episode. Hey, it's a journey. I'm trying.

Anyway, I've come to this realization lately, that I can be very critical of people. Oh, you already knew that? I'm not surprised. I can be pretty opinionated. But I'm starting to understand that I don't need to hurt people, even if they hurt me.

Because, guess what? Not everyone has a chronic illness. Not everyone has been abused or cheated on or lied to. But we all have our struggles. Pain is not a contest. There's no way to measure and compare each other's suffering. We've all got problems. They all make us miserable.

So why not just be nice to people? Why not try to understand them? Why not go the extra mile even if they're not doing anything to deserve it? You never know what someone is feeling or what they are going through. And by the way, we all deserve a kind word. We all deserve a smile or a hug or at least to be left alone in times of crisis.

So thanks Lupus. Thanks for encouraging me to say what I feel in a gentler way, rather than holding it in until it bursts forth in a spew of obscenities and other nonsense. Or at least, that's the idea. Wish me luck. It's going to be a long road.

Lupus isn't always good, but that's good too

 

Lupus is a bad-ass, but so am I. So there! Ya, Lupus throws a lot of crap my way. Between the symptoms and the medications, life with Lupus can be pretty darn miserable. It can make me angry, sick, moody, constipated, dizzy, feverish, well, you get the idea. Besides, I don't have room for all the symptoms I face with Lupus.

So where is the good part? When does that come in exactly? And how the heck am I even able to find so very many good things about Lupus?

Simple answer. Lupus gives me strength. Strength to fight it. It also gives me the resolve I need to live a happy life and many other things, in spite of it. But mostly, it gives me that strength.

And in turn, that strength helps me to carry on.

Isn't it ironic that the very worse things about Lupus can also be the best? I'll be fighting Lupus for the rest of my life. Isn't it great that Lupus has given me the strength to do so?

Thanks, Lupus. For making me stronger than I ever knew I was or thought I could be. 

I'm going to need it!  

Lupus makes the good days brighter

Does the sun shine brighter on "Lupies"?

Seriously, you guys. It does. How so? Well, here's the deal. When you've been up all night with various digestive issues for two weeks and then, you have two miraculously good nights of sleep in a row, somehow, it makes those two days that follow the good nights seem like the most awesome days of your life!

With Lupus, I am much more grateful for all the good days and good times of my life. They are brighter, sweeter, more precious and more appreciated than they ever have been, especially when they follow those bad days. The simplest thing like hearing my grand-daughter giggle puts the widest grin on my face now.

I'm lucky to still be here. I'm lucky to have all the people in my life that I do. I'm lucky to have Gary to support me since working is out of the question. I live for those good days and I love them way more than most healthy folks do, or at least I would guess so.

So, thanks, Lupus. For showing me what the dark side feels like so I can be happier when the sun shines!

Even if it kills me

"I don't know where I'm going from here but I promise, it won't be boring."

I woke up yesterday morning, opened a page on my computer and learned that David Bowie had died of cancer. This prompted the notion that there comes a point in every person's chronic illness journey where they say to themselves, “Oh wow, this is for real. It's not going away.” And then I also thought to myself, “Will I continue to love Lupus if it kills me?”

“My” Lupus is for real and it's not going away. Oh sure, there are many things I can do to make myself feel better and even to actually be better. Still, it's hanging in there like a dark shadow over my head. But even if it kills me, I am determined to look at the bright side of what Lupus has brought to my life.

I suppose it's mostly because I'm the stubbornly optimistic type. I refuse to look at anything from the dark side, as it were. But there really is more to it than that. I really am quite grateful for all the life lessons Lupus has pounded home for me. Top of the list is definitely empathy for the struggles of others. With Lupus, I understand completely what it's like to be powerless over one's body.

So many people like Bowie, that I admire have been lost to disease lately. Those diseases could not take away who they were, how they made me feel and the differences they made in my life. They did, however, render many great people powerless over their eventual fate. But you know what? We ALL are, aren't we? Powerless over death, that is. So why let it define us too? Lupus has my body but it can't have my spirit. Plus, it has taught me a great many things for which I have to love it.

So, yes, even if Lupus takes my life, I will be grateful for the awareness and the wake up call that have made my life what it is now. Lupus has indirectly slapped me in the face and shown me what's important in life. I will never think the same way I did before. I will never turn my back on suffering or pain in any form. I just simply have to love Lupus for all it has done for me, even if it takes my life.

And maybe, just maybe, if it does, someone out there will take my example and live positively through their own struggles.

Loving the morning after with Lupus

Zzzzzzzzzz

Now don't get all crazy on me. You know I'm not that kind of girl. When I speak of the morning after, I'm referring to those up all night sick nights. I'll spare you the details. But why, oh why would I love the morning after with Lupus? After all, Lupus doesn't exactly add to the fun, now does it?

No, it sure doesn't. In fact, 99% of the time, Lupus is the reason I was up all night. So, where's that bright side I'm always looking on? How in the heck can I love the morning with Lupus? Especially after a night dealing with, well, you know.... those various unmentionable symptoms.

It's pretty simple, actually. You see, even though the morning after brings with it much pain, suffering and fatigue, there's one obligation I don't have with Lupus. Because with Lupus, I am forced to work at home.

That's right. When I'm sick, I don't have to go to a job outside the home. I don't even have to call in. I don't have to convince my boss that I'm not up to it. I don't have to endure the stares of the employees that did my job in my absence. I don't have to explain myself to anyone. That's because with Lupus, I can't have a regular job anyway.

And, Lupus aside, the best part about writing for a living might actually be that unless I'm on death's door, I can still do my job on the morning after a rough night. But only if I feel up to it. Which is pretty awesome.

So, thanks Lupus, for making it unnecessary for me to endure all that workplace sick day mess. Because here in morning after land, the last thing I need to worry about is a J.O.B.

Those who can't.... teach?

We usually take this saying negatively. Lupus has taught me to take it positively. I may not be much use in the physical sense these days. Oh, I have my powerhouse moments, for sure. And I do as much as I possibly can to live life as close to “normally” as possible. Still, there are many things I'm just not capable of. I'm not ashamed to admit it. But, here's the great thing....

I can help other people find their own personal strengths.

I can help them stand up and do everything they dream of. I can help them stand for themselves by refusing to take care of their responsibilities and insisting they take care of their own. I can teach them what I know so they can use it to their advantage. I can tell them my experiences so that they can learn from them. I can be a good example and a good friend.

I really have no limits.

Because, while Lupus keeps me from running marathons, I can still live vicariously through the marathons and personal triumphs of the people I love. I can feel pride surging through my veins when they accomplish the things I'm prevented from accomplishing on my own. Those aren't just their victories, they're mine too. Because I am their teacher, their mentor, their mother, their grandmother, their friend and their biggest fan.

I can open other people's eyes to the truth too.

I can inspire. I can educate. I can stand up for what's right and empowering and arm myself and others with the truth and the evidence to do away with what's wrong and hurtful. I can advocate for peaceful solutions and better ways of living. I can promote ideas that will create a better world for all of us. Maybe eventually, I will have to do it from my arm chair. And that's all because....

Those who can't do, can indeed teach.

And it's a beautiful thing!

Lupus provides time for quiet reflection

Lupus makes it next to impossible for me to work a regular job. Sometimes that's rather nice. Sometimes, it's downright irritating. Relying on someone else to support me isn't as wonderful as it may seem. That's especially true because I'm used to being super self reliant. It's OK, though. Because the trade off is that I have plenty of time for something I've never been able to do before.

I have time to think!

Now, granted, I don't spend all day just thinking. Nope. In fact, I still have a lot of responsibilities. I make money with my writing and art, so I'm busy with that and with the house and garden. Still, if I choose to do so, I can just stop in the middle of it all, curl up in my chair and reflect on my life, or just decide what direction to take it in next.

In fact, sometimes I have to stop and think.

You see, Lupus loves to tell me to sit my butt down. I'll be working away when suddenly the fatigue hits me or my muscles refuse to budge or I have a dizzy spell, etc. If I don't immediately fall asleep, well, there's not much else to do but sit there and quietly think the time away until I feel better. It's forced relaxation. Because frankly, that's about the only way you will get me to relax is by forcing me.

Thanks, Lupus!

It's so nice to have a chance to gather my thoughts after many years of single parenting and grand-parenting. True, it's not under the most pleasant of circumstances. But hey, why not look at the bright side? Lupus has given me something I've never had. Time for myself!

Love for the esophageal hypomotility of Lupus

Most people take swallowing for granted, right?

Esophageal hypomotility? Oh my goodness! What the heck is that? And why on earth would I love it? Lupus symptoms are a big fat pain in the neck, or in this case, the esophagus. Esophageal hypomotility is probably one of the most annoying Lupus symptoms I have.

I have trouble swallowing and with food “backing up.” I often wake up coughing at night from (excuse me please, but no delicate way to put this) choking on said regurgitation. I also have this horridly severe and relentless pain under my breastbone that comes and goes at random. Oh and gas. Lots and lots of gas, which if I do not express it, will cause me horrendous pain. Oh, ya. I'm real fun at parties. Don't feed me after 6 pm. Ha ha ha.

My rheumatologist told me that these symptoms are common in Lupus patients, but she was a little vague about what it actually was and what I could do about it. So, of course, as a writer, I had to look it up for myself.

Turns out that this is not fatty liver, gerd, acid reflux or cancer of the esophagus, but a malfunction of my esophagus. Esophageal hypomotility is hard to pronounce. It sometimes goes by other names. However, whatever it's called, it's still good to know why I'm going through this.

Now, I'm not into self diagnoses. However, I do have the exact symptoms of this affliction, bar none, so it's pretty obvious. Next time I go in for my regular appointment, I'll be sure to discuss and confirm, of course.

Meanwhile, let's get to the love, shall we?

First of all, if you have Lupus or another autoimmune disease, you may be going through the same thing. So, my experience and research may help you. And that's a wonderful thing. I love helping my peeps.

Secondly, there is one side effect to this esophagus malfunction that's great for me. You see, I'm still about 50 pounds overweight. And this condition often results in weight loss because you have no choice but to eat light. Now, I do have to be sure to get my nutrients because my food sometimes does not digest properly and I don't eat much.

But hey, with autoimmune diseases, it's very important to look on the bright side. This extra weight I'm carrying around is terrible for my overall health. So, while I do feel like crap for sure and the Lupus is no joke, at least I'm losing weight.

Don't worry you guys, I am very careful to get everything I need nutritionally. I'm not wasting away or depriving myself. It's just that I have to deal with this regardless and I prefer to look on the bright side. When my willpower wanes, the symptoms of this condition force me to cut portions and eat nutrient dense food. That's at least a good thing.

So thanks, Lupus for messing up my esophagus and forcing me to eat more sensibly. Heaven knows, I have a hard time doing so on my own!

Gardening in the rain with Lupus

It's kind of a crazy sort of Lupus Love, but do you know that gardening with Lupus has actually taught me to love wet, muddy, nasty days in the garden? Oh ya. Big time. Here's why.

As most people know, the sun is not a friend of us “Lupies.” Oh, some of us absolutely love it. It just doesn't love us. Spending a lot of time in the sun can give us rashes, flare-ups and just generally make us tired as all get out. So, naturally, I chose gardening as a hobby. Ha ha ha.

Getting to the point now, don't despair. I used to absolutely dread gardening in the rain. Now, I love it just as much as I hated it. Why? Because I have more energy when the sun is not beating down on my head. That means I can get more done and still feel great afterward.

In other words, when I garden under a cloud cover, I feel almost normal. Today for instance, I filled up the buckets that I needed with soil in record time. It was almost like I wasn't sick at all! Oh sure, Lupus makes me tired, regardless of the weather. But to me, since I deal with that daily, gardening in the rain is a piece of strawberry shortcake. And I do love shortcake.

Always loved the rain too. Now I love it even more!

Thanks, Lupus!

Lupus taught me to mind my own business

Lupus leaves no time for gossip.

Living with Lupus is a challenge, but it's also a time management tool. I don't have time for things that don't matter. I have no time to run anyone else's life and I don't expect anyone to run mine. That's my job and I accept full responsibility for it.

I make mistakes, just like anyone else on the planet. What I don't do is tolerate feeling guilty about it or being made to feel guilty about it. I want the rest of my time to be spent on more important things, like changing my own life for the better and giving others the same power.

I refuse to spend any time being miserable or feeling guilty after the fact. When I make mistakes, they're all about learning and growing. Instead of looking at my mistakes as character flaws, I look at them as opportunities for change.

There's more, though. In the past, I looked at other people's mistakes as something I needed to help them change. Now, with Lupus, I'm so busy trying to heal myself that I really don't have the time to worry about what everyone else is doing, even those that I hold dear. While that may sound selfish or inattentive, it's actually a very healthy thing for both me and them.

Not only does this put the responsibility for other people's growth in their own hands and show them that I respect their choices, it puts the responsibility for my own life in mine, right where it belongs.

I am an adult and as such, I am perfectly capable of recognizing my own mistakes and making changes where I see fit. That's my responsibility. It should be in my hands. Don't be embarrassed by my mistakes. They are not yours. They are mine to own and make amends for. You have nothing to be embarrassed about.

By placing the responsibility for my mistakes in my own hands, you are also more free to work on your own life and personal priorities.

Your mistakes are not my business. They are yours to own and manage. I embrace you just as you are. Your personal growth is your personal business.

I am not here to judge you or reprimand you, just as you are not here to judge me. I am not embarrassed by your mistakes because I recognize that you are human too and we humans are a work in progress. Progress must be made in our own time, on our own paths, by our own choice in order to be effective.

So, to put it bluntly, by making me prioritize my own time, Lupus has basically taught me to mind my own business and leave others to do the same while providing the strength, support and acceptance they need in order to do so.

Thanks, Lupus!

Lupus says, “Don't write off a whole day!”

Doing a little each day produces big results!

 Oh boy. This morning I did just a few things done from my to-do list and suddenly felt like the whole day was going to be a loss. I just had to sit down. No choice in the matter at all. I was ready to spend the rest of my day in the recliner. Surprise! Lupus had another lesson to teach me.

According to what my doctor said yesterday, I am very sick and should take it easier. According to the way I felt this morning, she was right. But guess what? Once I rested a bit today, I was actually able to get a few more things done. Lupus gave me a 2^nd wind. It doesn't always do that. And sure, I'm still not quite up to par. And yes, I will have to rest again.

Still, I was ready to throw the whole darn day out the window. That would have been a mistake. Because if I did, the watermelon would not have gotten planted. The stray cucumber plant that I missed the other day wouldn't be ready to work its' way up the trellis from the pot I popped it into. The dishes would not have gotten done and this little post would not be getting written.

In fact, with a little rest, here and there, I may even be able to tackle some more small projects before the day is through. And to think I was all ready to give up the entire day due to a little sick spell.

Now, wouldn't that have been a wasted day? And all because I assumed, due to how I felt at one bad moment, that I would be sitting on my butt the rest of the day.

Lupus says, “Never assume.”

Thanks, Lupus

With Lupus, epic is a matter of perspective

Even planting a simple pot of flowers is epic with Lupus

One night, Gary told me about some nuns who grow spirulina for the hungry. I looked up how you do it. Um, no. Not a good plan. A bit too technical for me. Still, I would very much like to do something completely epic like that in my lifetime. As I posted on Facebook this morning, I have all this time since I have to be home with Lupus anyway. Surely there must be something epic I can do that's up my alley.

Why yes. Yes there is. I can live my life the best way I can. Does that sound defeatist? It's not at all. You see, after I made that Facebook post, I decided to get to work on my garden, in hopes of growing food for the hungry. But before that, I thought I'd warm up by writing the great American novel, self help book or at least jot down a bunch of crap that's been in my head for a while.

About two pages into my epic book, I was done. My thoughts were hopping around like bunny rabbits. I couldn't seem to stay in the same “person” and as much as the subject matter appealed to me, the focus just wasn't there. So, I decided to get going on that epic garden.

After about a half hour of weeding, I started seeing spots in front of my eyes. I had to sit down, inside, in the shade to gather myself. That was when it hit me. With Lupus, epic is a relevant term. Just growing my own garden with Lupus is epic. Writing this little blog with Lupus is epic. In fact, just about everything I accomplish with Lupus is a triumphant victory.

I am simply drowning in epic on a daily basis and I didn't even know it. So thanks, Lupus, for showing me how epic my life already is. I don't have to break any records other than my own or do anything spectacular at all. This battle I'm fighting is epic enough, thank-you very much. Now, where did I put that remote?

How Lupus talked me into a makeover

Meh, it'll do!

Yup. Lupus has done some incredible things for me. This one started with the cold from Hades. Which, not surprisingly, made me look like Hades. It went on to find me staring at myself in a mirror at the thrift store in utter astonishment. It ended with a makeover. Read on for the details.

Gary and I have been searching for some kind of funky old thing to put a sink in or on. In fact, I've been searching for all kinds of things to make the house look better lately. Nothing wrong with that, right?

For about a week now, I have had the aforementioned (see paragraph one) cold from Hades. Swollen glands, sore throat, cough of the dead, grim reaper hanging over my recliner with a big grin on his face, tissues filling the waste basket at my side.... Well, you get the picture.

When you have Lupus and Rheumatoid or any other chronic autoimmune disease, this kind of thing does not leave you quickly or leave you looking, sounding or feeling very desirable when it's done with you.

That was obvious when I looked in the thrift store mirror after another fruitless search for a vintage sink cabinet. Who the hell is that old lady following me? Why is she wearing my clothes and carrying my purse?

Wait. Is that me? Are those my baggy Mom jeans? When did I start being OK with wearing those? Is that my Grandma jacket? At least I'm pretty sure my Grandma had one. What the hell happened to that sexy little hippie chick I used to be?

I took a long, hard, disappointed look at my face. It was nearly vampiresque pale. But not the sexy vampire pallor. You know the wrinkled, hollow, greenish-white vampire that the sexy vampire rapidly ages into when she is vanquished? The one that explodes in a puff of smoke? Ya, that was me in thrift store mirror.

Nooooooo....... That could NOT be me!

Upon even closer inspection, I ascertained that I had waited a bit too long to toss my fat clothes, dye my hair and just generally make sure I looked like a human being. In other words, while I was trying my utmost to keep up the house, I forgot to keep up my appearance.

So this granny shuffled on out of the store, looking like death warmed over on a mission. She then proceeded to go home as quickly as possible without too many people bearing witness to her shame and give herself a head to toe makeover.

So thanks Lupus. If you hadn't hit me with that relentless cold, I might have gone on worrying about everything but my appearance for the rest of my life. Thanks to you, well, I may not look like that 20 year old hippie chick I used to be, but at least I don't look like a have a stake in my chest and one foot in the grave!

Lupus forces me to garden peacefully

Where are my gardeners? Gardening is not always the peaceful proposition that you envisioned, is it? In fact, it's strenuous work. Not with Lupus. What? One would think that gardening with Lupus was even harder than gardening without it. It certainly is, in some respects. In fact, it can be downright crippling. That is, if you continue to garden the way you did without Lupus. However, if you let Lupus guide you, gardening can be very tranquil, just like you always thought it should be.

How so?

I can only speak for myself, of course. Your experience may be different. However, with Lupus, I find myself forced to garden at a slower pace. I work the garden in shorter, less intensive spurts now. I do just a bit of work before heading back inside. Or, I sit under a shade tree, out of the sun and sip some iced tea every few minutes while gardening. I have less of a get it done right this minute attitude now that Lupus is ever present in the garden with me.

And there's more.

Lupus still prompts me to get it done, but slowly and peacefully. So, in the middle of winter, on warm days, you might find me in the garden as well. I putter around, here and there, getting ready for spring before it hits. I'm in no hurry, because I know that if I do a little something each warm day, eventually, it'll all get done before planting time.

A bonus:

By puttering around slowly and surely in the garden all winter, I also avoid some of the work I might normally be doing in the more intense sunlight of warmer months or even in the fall. For those who don't know it, the sun is not kind to us “Lupies.” I'm pretty lucky in that respect. Some have more extreme reactions. Me, I'm able to get a little natural vitamin D, as long as I don't overdo it. Those small spurts are perfect for that.

And speaking of Vitamin D....

Did you know that it prevents depression? So, by getting my 15 minutes of full sun a day, then using shade to my advantage, I bring even more of a peaceful aura to the garden. And by not overindulging in sunlight, I stave off the crankiness that comes with overexerting myself in that same sun. Lupus brings me a balance in this area that I feel grateful for. Before Lupus, since I'm a bit of a natural worker bee, I was often exhausted from too much sun exposure and intense labor in the garden.

And while I'm under that tree....

I can use my frequent breaks to work on my less intensive to do list items. Things like balancing my check-book, etc. You know. Those things that usually get put off for way too long. I can also work on

fun stuff like painting, photography and writing. So, between getting the to do's done and taking time out for fun, my time in the garden becomes even more peaceful, because my head is free, clear and happy.

You know, if it wasn't for the pain, I would highly recommend Lupus to everyone. Ha! Just kidding. But it does bring me peace in the garden.

Lupus forced me to burn my bra

No more of these torture devices for me!

Ha ha ha. I always wanted to burn my bra back in the day when those protests were popular. Now, Lupus is forcing me too. What a strange side benefit to Lupus, right? Oh well, I never did like wearing a bra that much and I'm not really all that well endowed anyway. In fact, in the eighth grade, a nun once pulled me discreetly to one side and whispered, “Why don't you wear a bra?' To which I replied, “Because I don't need one.” But back to the subject at hand.

You see, with Lupus and Rheumatoid, anything that constricts movement causes issues. I've been having these overwhelmingly painful back-aches. After an ER visit, they were pinned down to a localized portion of my spine, which so happens to be directly under the spot where my bra strap hits. So, I put 2 and 2 together (which is more than I can say for the medical professionals) and experimented with going bra-less. Voila! That was the issue alright. After a few days of hanging loose, my back pain completely went away.

Now, I suppose, for those with a little more up front, this would have the opposite effect. But for me, it was the perfect solution. According to recent research, there is absolutely no medical benefit to wearing a bra. Of course for some women, it's needed to keep the girls perky and in place, but for someone like me, who doesn't hang all that low, it's no biggie. Oh sure, they look better when you pull them up and reel them in, but there's not all that big a difference in my case. LOL Sorry for the personal details.

So now, thanks to Lupus, my ladies can roam free in cami's and tank tops. And my back-aches are a thing of the past. You know, they gave me pain pills, right? But personally, I pretty much always go for the non-chemical, natural solution. And what's more natural than being loose and fancy free?

Thanks Lupus. And my back thanks you too!

Lupus makes everything beautiful

We are stardust!

No, I don't mean beautiful by comparison. It's much more than that. Although, I suppose that's true enough. Lupus isn't pretty sometimes. So, what the heck do I mean? Well, it's more of an appreciation thing I guess. Since I was diagnosed with Lupus, every bit of my life seems a little sweeter.

I see all the beauty in life that I never noticed before. I even see the beauty in having Lupus, as witnessed by this blog. And you know that saying about living for the small things? It just becomes clearer with Lupus.

Lupus gives me the clarity I need to see behind grumpy people, mean people and angry people too. It helps me understand that there is a deep, personal beauty in everyone. Sure, it can be hard to find it in some folks, but the effort is worth it.

And with Lupus, of course, since I can't really work, I have plenty of time to seek out the beautiful things in life too. When it snows, I can sit by the window and watch the fairy magic. When it rains, I can dance in it (on good days). When the sun shines, although I can't stay in it for long, I can sit in my back yard and just soak it up for a few minutes.

I have time to watch sunsets and sunrises. I revel in the small expressions that cross the faces of my loved ones. I delight in watching life burst forth from my garden.

I know that you might say that one could do that without Lupus. But the thing is that with Lupus, with the knowing and facing of my own immortality, there comes this deeper understanding that I can't quite explain.

The things I used to think of as important have fallen by the wayside. That never ending quest for fame and fortune is the biggest one.

I can relax and just enjoy the beauty of my life.

Material possessions fade into the background. I don't really want anything but happiness.

Yes, Lupus hurts like holy hell. It makes me so very, very tired. I'm deeply, bone chillingly, dizzy at times. It sucks. But it also brings me to a place of beautiful acceptance that “normal” people never get to see.

So thanks Lupus, for showing me that life is beautiful, in and of itself, no qualifications, classifications, designations or limitations required. It's just spectacularly wondrously, lovely. Every last bit of it!

Lupus thumbs its nose at Catholic Guilt (CG)

Don't even think about it, sister!

If I were a comedian, I'd be using my hand as a visor right now. “Where are my Catholics? The Catholic church has a way of embedding lifetime guilt, even about things we shouldn't be feeling guilty for at all. Am I right, folks? Luckily, Lupus is very effective at assuaging that guilt. Here's how the dialog goes between CG (Catholic Guilt) and LL (Lupus Love).”

CG “You can't take a nap now, your dishes are dirty.”

LL “Screw that, I'm putting you to sleep right now. 3-2-1 and.... done. Ha!”

CG “You forgot to water the garden this morning. Get your butt out there now and do it!”

LL “No way, you know what the mid-day sun does to you. Stay inside and have a nice cool glass of ginger tea.”

CG “You have to move the couch and sweep under there. The dust bunny population is ridiculous.”

LL “Um, I think not. Remember the pain last time you did something stupid like that?”

CG “Your home must be immaculate at all times.”

LL “Take care of yourself or I'll make sure you have no choice in the matter.”

CG “You must get a “real” job and be a contributing member of society.”

LL “Hello there. Remember me? Real jobs equal real pain. Plus, even CG would have to admit that it's not a good idea. Your employer wouldn't be able to rely on you.”

And so on.... Lupus leaves no room for Catholic guilt trips. It makes sure to let me know when I've done too much. It allows me to take naps without feeling guilty. It lets me watch movies while the house falls apart around me if I'm having a bad flare. It prompts me to ask others for help, even when the help involves a task I used to be able to take care of myself. Is it frustrating sometimes? Sure. But at least I found a way to get rid of those nonsensical Catholic guilt trips for good.

So, thanks for kicking my Catholic guilt to the curb, Lupus. It's been a long time coming.

Lupus gives me time – Sort of

Ha ha ha If you have a chronic illness, you know exactly what I mean by sort of. Time is not something we have a lot of. Enough said and that being said, having Lupus does mean I am home most of the time. Home, you know. The place where all my to do lists come to fruition.

So, as long as I'm not flaring, too dizzy to walk or just generally feeling like crap, I have more time to get things done than the average working person. Oops, that doesn't sound very positive does it? On the other hand, it really is.

Lupus allows me to stay home and do all the things that no one else in the house has time for. And when I am feeling good, I'm more than happy to do those things. That's because it sucks to feel bad and not have the option of getting things done and it sucks to not be able to work. It sucks to feel like you are not contributing to the household.

So Lupus, quite indirectly, hands me a way to be a productive member of the household by forcing me to stay home where all the action is. Sure, it's a bit of a trade off. Sure, there are times when the bad days keep me down. But when those good days come, I can really kick some ass and that feels damn good to someone who can't work at a conventional job.

Because however soul sucking and miserable that former job might have been, it was still nice to have the security of that regular paycheck. LOL

So, thanks Lupus, for giving this little family the gift of someone who can stay home and get things done. Even if that someone is me and getting things done is a challenge some days. It's all good and it keeps me from feeling like I don't contribute.

Oh and thanks for forcing me into early retirement too. After 35 years of working several jobs at a time to support my kids and grand-kids, I needed a break like most people cannot possibly imagine.

And another PS – Thanks to all my family members, who are always sure to say how much they appreciate what I do for them and who help me and comfort me whenever and however they can.

I am so lucky!

Lupus got me medical coverage – twice

OK, so we all know that we are required to have health care coverage now, Lupus notwithstanding. It's just that some of us need that pounded into our heads a bit harder than others. Me being one of those someones, I have to give credit where credit is due. If it weren't for Lupus, I wouldn't have any health care.

I used to be one of those on the ball people, but I have found that for me at least, procrastination comes with age. I also experience mind blowing frustration with online health care applications. They drive me up the wall. Heck, they drive everyone around me while I fill them out nuts too.

Now here's how Lupus got me medical coverage twice. The first time was when I experienced my first official butt kicking from Lupus. I had no choice but to get myself to the ER. There, the hospital, due to the fact that they like being paid for services rendered, helped me apply for assistance under a Colorado plan known as CICP. No procrastination allowed.

That coverage became null and void once “Obamacare” came into play. I then applied for medicaid, but was denied for being an illegal alien. Bwa ha ha ha I'm not, of course. Thus the bwa ha ha ha. Due to my frustration and procrastination habits, I have managed to put off straightening that mess out for about a year and a half. Ya, I know. Not too bright, but it is what it is. Or WAS.

Then, last night, a case of severe back pain straight from Hades sent me back to the ER. It's all good now. I'm fine. However, when they found I was sans health insurance, they gave me temporary CICP and ordered me to apply for medicaid or pay the whole astronomical bill. So, this morning, online I went. After several hours of cursing and general frustration, I emerged victorious.

I am now an official medicaid recipient. So, thanks Lupus. Without you, I'd probably be without health insurance for at least another year before I sucked it up and got it done. Now I can go to the rheumy without my awesome boyfriend paying through the nose for it. I can also get eye exams and necessary dental work. No more old lady breath! LOL

Go Lupus!

Lupus gives me resolve

With Lupus, accomplishing anything at all is a struggle. Ironically, the very thing that causes me to slow down can also be the greatest factor in promoting the resolve needed to get things done. Crazy, isn't it? But you know, at the ripe old age of 55, with a chronic illness hitching a ride wherever I go, there's little time left for procrastination.

Yup, if I'm going to do anything I want to do in life, I better get it done now. For sure. Because tomorrow is not a guarantee.

When I was young, I figured that I always had tomorrow to rely on. After all, I knew the odds of survival were in my favor. That's not really the case any more. So, while Lupus is a definite handicap, it also encourages me to do everything I can whenever I'm able.

Lupus gives me the resolve needed to stand up for myself, stop pandering to the needs of others while ignoring myself and so much more. I don't have all the time in the world so I figure, I better make the most of it.

Whenever I need encouragement, there is Lupus, cheering me on. When I need strength, there it is again, reminding me that “time's a wasting” as the old folks used to say. Even when the only resolve I need is the power to get up from my chair, Lupus is there for me.

I've been told not to look at Lupus as a part of me, but a cancer to be given the boot. I think that's dead wrong. Because, like it or not, Lupus is here to stay for the duration of my life. I might as well learn to get along with it and appreciate the good things it has to offer.

And so, I have decided to use the resolve Lupus has given me to find those positives and highlight them, rather than dwelling on nasty symptoms, chronic pain and more. But mostly, I've resolved to use that knowledge to help others with the same or similar issues.

So thanks Lupus, for the resolve I need to inspire myself and others to get it done. Thanks for showing me that I can still have a life worth living, even with a chronic illness.

Lupus brings out my creative side

I'm no Van Gogh, but I have fun with it.

A long time ago in a kingdom far, far away, I was a free spirited artist. All that really mattered to me was how much of my day would be spent creating. I didn't worry about the expectations of society. I just went with the flow. Somewhere along the way, I lost touch with that. Now, with Lupus, I can leave out the formalities and simply create whatever is in my head and begging to come out.

It could be a painting, a drawing or even this blog. It really doesn't matter. The point is that, because Lupus forces me to stay home, I can use that time to do all the creative things I left behind before I became an adult and had to spend all my time making enough money to survive.

I also have realized, by way of Lupus, just exactly what's important in life. It isn't making money. It isn't striving for monetary success, artistic perfection or public recognition. At least, it isn't those things for me. For me, it's self expression, self awareness and just general happiness with my daily life.

That shouldn't surprise me, I guess. I've always been rebellious. I've always been the misfit weirdo. Still, before Lupus, I spent a lot of time doing the things society tells us are important in the name of survival. After Lupus, I feel more in touch with the things that same society forced me to leave behind in the interest of self preservation and forced conformity.

So thanks Lupus, for getting me back in touch with reality. With creativity and free expression back in my life, I feel more like my old self. If Lupus hadn't come along, I'd probably still be drudging away in retail, denying that there was an issue and finding solace in whatever form of creativity I was allowed to engage in. That's not a life. That's oppression.

Lupus keeps me humble

Thanks for the knock-downs, Lupus!

You guys, let's face it. Most of us think we're always right, don't we? Or at least we think we're on the right path for us, personally. We are so inherently egotistical sometimes that we don't even realize it. In fact, some of the people who are most sure of themselves (of whom I used to be one) become blind to other ways of doing things. Thank goodness that one of the benefits of Lupus is a humble thought process.

Now, there are certain principles I have seen proven that I will always adhere to. I stay away from fatty foods. I try to keep active. I try to stay positive while simultaneously paying homage to the empowering negative symptoms of Lupus. However, I no longer assume that I'm right. Come now, we all do it occasionally. We all shake our heads at people who have, in our opinion, gone a bit off track, right?

Lupus knocks me down on a regular basis, despite my best efforts to stay healthy. Oh sure, giving up my soda pop habit, moving more and going vegan made those knock downs a lot less frequent. Absolutely. But, healthy habits or not, Lupus is a hell of a contender. And, as it turns out, I am not invincible, nor am I always right. Who knew?

And besides, why are we all so worried about being right anyway? And why do we worry so much about what other people are doing, aside from behaviors that impact us? Don't we have enough to take care of in our own lives? As they say, life is short. With chronic illness, it can be even shorter. Why not make it short AND sweet by being kind and accepting of others instead of battling it out over theories and such?

I will always speak up about injustices. Lupus hasn't made me change my mind about that. But now, I'm not so quick to judge others. Who knows? They may have some information that will help me as I journey through life. After all, I don't know everything. I'm not all powerful. Lupus has proven that theory for me, time and time again. So, thanks Lupus, for the knock-downs. They keep me humble.

Lupus and the gift of empathy

Before Lupus, I was sympathetic toward the needs of others. After Lupus, I am empathetic. That small change makes a huge difference in how I see the world and everyone in it. Now, with Lupus, I know what it means to suffer without relief. I know what it means to have a feeling of hopelessness. I know what it means to have no control over my health. I truly feel what I could only imagine before.

Empathy is a gift of immeasurable valuable. Lupus gives me so much more compassion and understanding that sometimes I can't believe it myself. Of course, there is a flip side. Empathy can ironically make me angry and resentful toward who don't feel compassion for others, if I let it. However, for the most part, it's a positive gift. Because when you can truly feel what others are going through, it's easier to be kind. In fact, compassion is usually part of the natural disease progression for those of us with chronic illness.

Lupus forces me to think more deeply about what others are enduring. For instance, now, when I see a person in a wheelchair, I think about the fact that not only do they have to rely on that chair, they are likely in a great deal of pain as well. I wonder about their other limitations and how they are dealing with them. Maybe someone has to bathe and dress them. Maybe they're depressed due to a lack of independence. Maybe, like me, they're sick of being sick and tired of being tired. Having Lupus makes me determined to help others who have similar struggles.

And it's not just me. Of all the people that I count as friends, I find those with chronic illness or other health concerns to be the most empathetic toward me as well. No matter how much pain they are in, they never fail to inquire about how I am. They never forget that while they are in pain, there are others who are suffering just as much.

Yes, empathy may be a gift that comes with a high price tag. Still, I find it worth the trade off. Thank-you Lupus for allowing me to empathize with the suffering of others and for reminding me that I'm not alone so that I can ease the pain for them in return.

Lupus is my stop sign in the best way possible

Sure, Lupus prevents me from doing a lot of things I enjoy. It also stops me from doing too much. And for me, that's a good thing. You see, I've always been the kind of person who helps everyone but number one. And, while that could be considered admirable, it can be taken too far.

With Lupus, I'm forced to take care of myself. I have to stop and say no to others once in a while. As much as it hurts, I have to be firm with people or I'm not going to survive this. Because taking on my own responsibilities and this illness combined with helping others is just too overwhelming. Overdoing it with a chronic illness can be fatal.

But there's much more to it than that.

You see, before I found out I had Lupus, I was doing too much, even for a healthy person. So, even if I was completely healthy, all the stress I was bringing on myself wasn't good for me.

I was taking on too many of other people's problems. I was trying to be everything to everyone. It wasn't just bad for me, either. It was bad for the people that I was helping.

You see, something else Lupus has taught me about life is that struggles are just as important as triumphs. Likely more so. They build strength and character like nothing else can. Therefore, being “good” to people by solving their problems for them isn't really all that admirable.

So that Lupus stop sign isn't just important for me to obey. It's also good for everyone around me. Leaving them to solve their own problems may seem cruel, but it's actually just the opposite. Lupus isn't a death sentence, but it will likely shorten my time with them. That means they need to learn to handle their own problems without my help now, before they have no choice in the matter.

So, Lupus is a stop sign, but it's a helpful one. For everyone. Not just me.

Loving life

To put it bluntly, life becomes very important when you're not sure how much of it you have left. Don't cry for me, Argentina. I'm having a ball. Since being diagnosed with Lupus, I have delved into living with a fervor that I had no idea was festering inside me.

I relish every little detail of every little day. It doesn't have to be New Year's Eve for me to make a resolution to live my best life. Now, Lupus is not a certain death sentence. It's an uncertain one. In that you can never be sure when it's coming. Oh, come on, you know that was funny. You're just afraid to laugh because you don't think you should.

But you should. You should laugh. You should love. You should live. And nothing will make you more sure of that than being diagnosed with a chronic illness. Now, if only you could get up from your chair, right? Ha! Don't worry, there will be days when you can rock it. So hang in there and wait for your moment.

But until then, do what you can. Because if there's one thing Lupus does for you, it's to make you appreciate life, even when it's not 100%. Even when you're not 100%. Even when nothing is 100%. And let's face it. Even without Lupus, life is never 100% awesome. If it were, you wouldn't be able to appreciate the bits that make it worth living.

Lupus is awesome at life appreciation 101.

Lupus teaches self love

Of all the things Lupus has taught me, I believe self love is the most important. All along the path of life, my focus has been on the needs of others. Now, you would think that was a good thing, wouldn't you? So did I, until Lupus came along to show me the light.

You see, I've always been a caretaker, a bleeding heart, a healer and a protector. The problem is that somewhere along the way, I forgot to take care of the most important person. Me. If that sounds selfish, hear me out.

Lupus made me realize that when I'm whole and happy and have my wits about me, I'm better at what I love best. Which is, of course, helping others. I started thinking about how little time I have left and I realized that I'm pretty darn important to the people who count on me.

I'd better take care of myself so I'll be here for them as long as possible. That means not only making sure that I stay strong and healthy. It also means staying happy myself, so I don't become a resentful, unfulfilled mess.

Out of Lupus self love have sprung my own repressed needs. I left them by the wayside long ago in order to spend more time making sure other people were happy. How foolish of me! I don't have the power to make anyone else happy. They have to do it themselves. Happiness comes from within. It's self created.

Thanks Lupus, for giving me back my life. Thanks for showing me that it's OK to do a few things for myself. Thanks for shining a light on what's important to me, the same way I enjoy helping others find what's important to them.

I won't let you down! - See more at: http://www.lifesuccessfully.com/lupus-love/loving-me#sthash.zkiqFU8V.dpuf

Of all the things Lupus has taught me, I believe self love is the most important. All along the path of life, my focus has been on the needs of others. Now, you would think that was a good thing, wouldn't you? So did I, until Lupus came along to show me the light.

You see, I've always been a caretaker, a bleeding heart, a healer, a protector. The problem is that somewhere along the way, I forgot to take care of the most important person. Me. 

If that sounds selfish, hear me out.

Lupus made me realize that when I'm whole and happy and have my wits about me, I can do what I love best. Which is, of course, helping others. I started thinking about how little time I have left and I realized that I'm pretty darn important to the people who count on me.

I'd better take care of myself so I'll be here for them as long as possible. That means not only making sure that I stay strong and healthy. It also means staying happy myself, so I don't become a resentful, unfulfilled mess.

Out of Lupus self love has sprung my own repressed needs. I left them by the wayside long ago in order to spend more time making sure other people were happy. How foolish of me! I don't have the power to make anyone else happy. They have to do it themselves. Happiness comes from within. It's self created.

Thanks Lupus, for giving me back my life. Thanks for showing me that it's OK to do a few things for myself. Thanks for shining a light on what's important to me, the same way I enjoy helping others find what's important to them.

I won't let you down!

Of all the things Lupus has taught me, I believe self love is the most important. All along the path of life, my focus has been on the needs of others. Now, you would think that was a good thing, wouldn't you? So did I, until Lupus came along to show me the light.

You see, I've always been a caretaker, a bleeding heart, a healer and a protector. The problem is that somewhere along the way, I forgot to take care of the most important person. Me. If that sounds selfish, hear me out.

Lupus made me realize that when I'm whole and happy and have my wits about me, I'm better at what I love best. Which is, of course, helping others. I started thinking about how little time I have left and I realized that I'm pretty darn important to the people who count on me.

I'd better take care of myself so I'll be here for them as long as possible. That means not only making sure that I stay strong and healthy. It also means staying happy myself, so I don't become a resentful, unfulfilled mess.

Out of Lupus self love have sprung my own repressed needs. I left them by the wayside long ago in order to spend more time making sure other people were happy. How foolish of me! I don't have the power to make anyone else happy. They have to do it themselves. Happiness comes from within. It's self created.

Thanks Lupus, for giving me back my life. Thanks for showing me that it's OK to do a few things for myself. Thanks for shining a light on what's important to me, the same way I enjoy helping others find what's important to them.

I won't let you down! - See more at: http://www.lifesuccessfully.com/lupus-love/loving-me#sthash.zkiqFU8V.dpuf

Of all the things Lupus has taught me, I believe self love is the most important. All along the path of life, my focus has been on the needs of others. Now, you would think that was a good thing, wouldn't you? So did I, until Lupus came along to show me the light.

You see, I've always been a caretaker, a bleeding heart, a healer and a protector. The problem is that somewhere along the way, I forgot to take care of the most important person. Me. If that sounds selfish, hear me out.

Lupus made me realize that when I'm whole and happy and have my wits about me, I'm better at what I love best. Which is, of course, helping others. I started thinking about how little time I have left and I realized that I'm pretty darn important to the people who count on me.

I'd better take care of myself so I'll be here for them as long as possible. That means not only making sure that I stay strong and healthy. It also means staying happy myself, so I don't become a resentful, unfulfilled mess.

Out of Lupus self love have sprung my own repressed needs. I left them by the wayside long ago in order to spend more time making sure other people were happy. How foolish of me! I don't have the power to make anyone else happy. They have to do it themselves. Happiness comes from within. It's self created.

Thanks Lupus, for giving me back my life. Thanks for showing me that it's OK to do a few things for myself. Thanks for shining a light on what's important to me, the same way I enjoy helping others find what's important to them.

I won't let you down! - See more at: http://www.lifesuccessfully.com/lupus-love#sthash.7jTsGsSI.dpuf

Of all the things Lupus has taught me, I believe self love is the most important. All along the path of life, my focus has been on the needs of others. Now, you would think that was a good thing, wouldn't you? So did I, until Lupus came along to show me the light.

You see, I've always been a caretaker, a bleeding heart, a healer and a protector. The problem is that somewhere along the way, I forgot to take care of the most important person. Me. If that sounds selfish, hear me out.

Lupus made me realize that when I'm whole and happy and have my wits about me, I'm better at what I love best. Which is, of course, helping others. I started thinking about how little time I have left and I realized that I'm pretty darn important to the people who count on me.

I'd better take care of myself so I'll be here for them as long as possible. That means not only making sure that I stay strong and healthy. It also means staying happy myself, so I don't become a resentful, unfulfilled mess.

Out of Lupus self love have sprung my own repressed needs. I left them by the wayside long ago in order to spend more time making sure other people were happy. How foolish of me! I don't have the power to make anyone else happy. They have to do it themselves. Happiness comes from within. It's self created.

Thanks Lupus, for giving me back my life. Thanks for showing me that it's OK to do a few things for myself. Thanks for shining a light on what's important to me, the same way I enjoy helping others find what's important to them.

I won't let you down! - See more at: http://www.lifesuccessfully.com/lupus-love#sthash.7jTsGsSI.dpuf

About Lupus Love

Lupus love? Are you kidding me? What's to love about Lupus? Exactly! Nobody knows about the good side of having a chronic illness because nobody talks about it. Nevertheless, there are plenty of positive things going on in the lives of us Lupies.

Like what? Well, like empathy, understanding and wisdom. Like finding the deeper meaning of life. Like finding peace within yourself. Like feeling the love around you more deeply. Like cutting the unnecessary baloney out of your life so you can get to the good stuff.

Plus, there's a lot of funny stuff that happens only to us Lupies. And laughter really is the best medicine, you know. Trust me, it works. But what if you can't laugh because you're in so much pain?

Lupus symptoms like chronic pain are incredibly difficult to live with. I know. It's excruciating. It's unrelenting. And worse of all, it's permanent. Ya, that's probably the hardest realization to take. Lupus is not going away, no matter what you or I do. That's all very true, but....

I think that plenty has been said about all that. I think that in the case of chronic illness, it's about time someone had something good to say. And that's exactly what's going to be happening on this blog. Believe it or not, I find something good about having Lupus every day.

I think sharing that will be good for me. I think it will lift me up and help me forget the bad stuff. More importantly, I think it will help you, whether you have Lupus or not. So please, follow me. Friend me. And share the Lupus love with me.

One day at a time. We can do this!