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.

Lupies: Don't fear the natural immune boosters!

There was back in the day support for the raw food diet. Who knew?

When your doctors tell you that your chronic autoimmune illness symptoms are due to your immune system attacking you, they are only partially right. And yes, I'm taking a bit of a break from writing strictly about Lupus love to send a message to all the chronic autoimmune illness sufferers out there. Well, honestly though, I do love Lupus and the author of “Goodbye Lupus” for teaching me this. So, I guess it's still about that Lupus Love. Anyway, here's the thing:

When you have a chronic illness/autoimmune disease, your immune system is sick. That's why it has no idea how to function. When you take immune system suppressant drugs they do work, though, right? Your inflammation decreases. Your pain decreases, etc. That's because they calm down your sick immune system to keep it from slapping you around. But what a lot of doctors, yes, even your rheumatologist, don't know is that there is a better way.

Now granted, I'm not a medical doctor. I'm not telling you to stop taking your prescribed meds in any way. I'm not trying to replace your doctor. What I am telling you is that when you take immune suppressants and avoid nutrients that boost your immunity at the same time, you are very effectively killing yourself. For real, you guys. Check this out.

This is my understanding of the issue. There are certain foods/nutrients that keep your immune system functioning properly. When those things are missing from your diet, things go very, very wrong. Your sick immune system starts attacking everything instead of just the “baddies.” And that, my friends is where autoimmune disease comes from.

Oh, the tendencies can be inherited for sure. Although, it isn't clear whether this is due to genes or family eating habits and lifestyles. And once you're already sick, it is absolutely necessary to take those immune suppressants, at least at first. However, it's extremely important (and the only way to get off the meds) that along with following your doctor's orders, you make absolutely sure that you are getting all the highly nutritional, pure immune boosters you possibly can.

So, while it may seem counterproductive to consume foods that boost immunity while taking immune suppressing drugs, doing so will actually, gradually help your immune system to heal so that it is no longer attacking your body. And when that happens, you will no longer need the drugs. And as long as you continue eating healthy, immune supportive foods, which should be for the rest of your life, you will be healed, that is, if healing is even a vague possibility for you.

I say that because for a small portion of people, there may be no turning back. However, you can still feel better and prolong your life by boosting your immunity, regardless of whether you will ever be cured completely.

Immune suppressant drugs are a deceptive band-aid, although they do work in the short term and can save your life in an extreme flare. However, nutrient dense foods (and an active lifestyle) are the real cure.

In other words, don't sit on your butt all day, downing whatever your doctor prescribes without a second thought or a minute of independent research, gorging on fast food and high fat, cholesterol loaded main dishes and high calorie snacks, feeling sorry for yourself, afraid to eat anything that might jump start your immune system.

Because it won't work. It's not a cure. It's may make you feel better for the moment, but it will make you much sicker in the long run.

How do I know this? Well, again, I am no doctor/nutritionist, however, I have spent the last 40 + years actively studying nutrition. This knowledge has also come about through my personal journey to better health, combined with advice from two physicians who have backgrounds in nutrition, one of whom cured her own extremely aggressive Lupus with diet.

Now, about that personal experience. I am in what I have dubbed “Phase 2” of bettering my health. I was already going vegan. Now I'm introducing some foods and supplements that are extremely nutrient dense, a little at a time. As time goes by and my diet and lifestyle change helps me more and more, I'm confident that I will be able to “go all the way” and heal myself.

You may wonder why I don't just do that now? Well, it's pretty simple, really. By introducing these super nutrients at a slower rate, my immune system is not crazy powerful at a time when it's still attacking my system. And yet, I'm still sending it healing help, so that this will eventually not be an issue.

And it's working. Right now, I'm taking 10,000 units of vitamin D3 daily, plus, adding chlorella, spirulina, chia seeds, flaxseed and a “Super Greens” multivitamin/mineral powder supplement to my morning fruit and veggie smoothie. I have almost completely eliminated two of my most annoying symptoms (acid reflux and extreme fatigue) by doing just this, combined with eating a healthy, balanced, vegan diet the rest of the day and moving a little more.

I also drink a chai tea with fresh pressed ginger every morning. I avoid processed foods like the plague and I drink a crap ton of filtered water. A gallon a day, at least.

My next step is going completely raw vegan and adding even more anti-oxidant, nutrient dense food to my plate. Now, I know, you guys. There are no guarantees in life. I may be saddled with Lupus forever. That's absolutely true. However, these changes are already improving my life, my health and my chance of survival. And that alone is good enough for me.

I see many of my fellow sufferers being put on medicine after medicine that bring about horrendous side effects and only partially work anyway. My docs were doing the same, albeit out of true concern. It's not their fault. It's how they were taught. They are, after all, only required to take 20-25 hours of nutritional training. I harbor no ill will toward them. I feel they are genuinely trying to help me.

But these changes I mentioned and that I am engaged in making, have completely cured many people much worse off than me of their autoimmune diseases. For instance, the doctor who wrote the book I just read (and many of her readers and patients) have now gone completely off their meds with no negative results or backslides/further flares. The doctor herself has been Lupus free now for 10 years. And her Lupus was much more progressive than mine.

Anyway.... If you are suffering from an auto-immune disease, your immune system is not functioning properly. It needs to be constantly overfed. You need more nutrients than the average person because before your body can benefit from them, your immune system needs to heal. Which may be just the opposite of what your doctor tells you. So take the vitamins and mineral supplements. Eat the nutrient dense food.

Please, do whatever is in your power to heal your broken system so that it stops attacking you!

I know that I'm glad I do this every day. Out of all my sick friends, I am the healthiest one. I know. It sounds funny/strange, right? But in all seriousness, what I am doing is working, slowly but surely. I want it to work for you too. Good nutrition is never harmful and it just might be the proactive answer to your prayers. So why not try?

You know all that crap you eat is killing you anyway, immune disease aside. So why not love yourself enough to stop eating it and start giving your body what it needs to both heal and thrive? You deserve a better, healthier life. We all do.

So, thanks Lupus, for teaching me something about healing that will help not only me, but my friends as well. Because, Lupus or not, we all can benefit from a healthy, high nutrient diet, right? Too bad it sometimes takes a huge wake up call to realize that.

Thanks, Lupus. For the pain and physical limitations?

Oh ya. Now, I know many of you will be thinking I'm an absolute nut case. That is, if you didn't already. On the other hand, I am notorious for looking on the bright side, so you might be used to my crazy meanderings. But thanks for the pain. Really? Thanks for making me physically limited? Really? How so? Well, I'll tell you something. There is a bright side to crippling pain. In fact, there may be more than one. So, here we go. Let me see if I can put this into words.

First of all, the pain of Lupus is like no other pain I have ever experienced in my life. And I have given birth to 4 kids. I didn't scream or cry when I gave birth, but I have done both in the past with Lupus on many occasions. However, when you experience that kind of pain on a daily basis, something miraculous happens. You get tough. Really, really tough. Like, nothing phases you tough.

Yup. I can sit in my chair, typing away while internally screaming in agony and no one is the wiser. Pain can shoot down my legs and out through my toenails and I can carry on a happy conversation like nothing at all is going on. I don't pout and whine any more either. When I have a complaint, I mention it, deal with it and move on.

I also handle psychological pain better than I used to. Facing your own mortality will do that for you in a quick hurry.

Because I know that in comparison, the pettiness of life's little troubles pale in comparison to chronic illness in general. By experiencing the worst, I have learned to appreciate the small stuff, even when it's not so pleasant. And my pain tolerance is off the chain, you guys. Totally off the chain.

And oh my gosh! I have the best damn excuse there is for not doing anything with physical risks. There's no way that I can jump from a plane, bungee jump, ride any large scale rapids, go into battle, brave the world's scariest roller coaster or anything else that's the risk your life for nothing kind of stupid anyone can dream up. For crap's sake, I have a hard time with stairs.

People don't even expect me to be able to go paragliding or rock climbing or any of that intense nonsense, so they don't even ask. Which is great. Because, in addition to having Lupus, Rheumatopid and Reynauds, I'm also a big time chicken shit. So, Lupus makes me look a little less chicken-shitty. Ha ha ha Don't you love it?

I also can't shovel snow, go skiing, climb Mt. Everest or do basically anything physical at all in the snow. Which is great because I got enough snow growing up. Too much, in fact. My feeling on snow is that it's pretty too look at, sometimes fun to drive in, nice to make snowmen, snowballs and snow angels with and after that, you can pretty much keep it.

So, thanks, Lupus. For keeping me from risking my life for a cheap thrill. And thanks for the pain tolerance. I'm going to need it later.

Feeling bad for well people

I now have the time and freedom to just sit and admire the flowers in the backyard.

I'm not sure if this is just another stage of chronic illness awareness or what but lately, I've been grateful to Lupus for the fact that I don't lead a normal life anymore. Isn't that crazy? Well, maybe not so much as you might think.

You see, I spend a little time each day thinking about the things other people do on a daily basis. Oh, how glad I am that I don't have to do them any more. I know what you're thinking. Yes, there are a lot of things “normal” people do that I wish I still could. So, there is that. I'm not climbing any mountains these days, for sure. Ha!

But guess what? This illness also takes a lot of pressure off me. Now, I'm not lazy by a long shot. But I spent a lot of years running the rat maze and I'm exhausted, you guys. And yes, I pay a price for the time off. A huge price. It's no party trying to function every day when you feel this sick. It's like having the flu 24/7, this illness.

Still, I watch everyone around me and I'm grateful to be relieved of all that social pressure they go through. If I'm sicker than usual, there is no boss to call. I just spend the day in my recliner, trying to heal as best I can. I don't have to make any excuses.

People generally understand when I'm too sick for housework and they pitch in on “my” chores. If I'm really in bad shape, they even bring me water or whatever I need. I'm not used to being waited on. That used to be what I did for others. So, that part is hard for me. But I'm still grateful that someone is there to help, rather than me having to work through the pain.

Anyway, back to the subject at hand. You know, when I was well, living a normal life was extremely tiring for me. I'm an introvert and very much lacking in the social graces. So, honestly, there are times when I'm actually glad to be sick so I don't have to deal with all the anxiety and pressures of trying to fit in any more.

So ya, thanks Lupus. Thanks for allowing me a little time to just relax and do the things I love doing when I'm able. And granted, I'm not all that able. LOL For instance, today, I'm just sitting in my recliner because I can't stand. No way. But still, it's a reprieve from the rat race. And for that, I am eternally grateful.

Lupus and instant Karma

Enough said?

Perhaps one of the best things about Lupus is that it provides instant Karma. While that may not sound like exactly the best thing to happen to someone, it's actually quite helpful. Oh ya. For instance, we all know that a sedentary lifestyle is bad for us. Well, with Lupus, you don't have to wait 20 years for the negative impact. In fact, sometimes you don't even have to wait a half hour.

If you spend your work days at the keyboard, like me, it only takes a short amount of time for you to feel the pain. In other words, with Lupus, if something is bad for you, you will know right away, no question about it. Why is that good?

Well, it's good because then you can avoid those things that for everyone else, take a lifetime to find out about and then, when they do, it's too late.

Here's a for instance. Last night, I went to Taco Bell. Now, some people go there on a regular basis. In fact, some people eat fast food nearly every day of their lives, right? They know it's bad for them. They also know that the effects of this bad habit will happen down the road. With Lupus, though, it doesn't work that way.

Oh no. Because even when I choose the healthiest thing on the menu and leave out all the “bad” stuff it contains, instant Karma is right there to remind me why I shouldn't eat fast food. In fact, the second that taco salad with no cheese or sour cream hit my esophagus, I knew I was in trouble. I will, as they say, spare you the details. Suffice it to say, I will not be eating at Taco Bell again. Like ever.

And that's just one instance. I don't overeat or overdo anything in general any more because instant Karma has taught me not to. I get up every half hour while writing because if I don't, the cramps will set in.

Yesterday, I played “Sims 3” for a long period of time while Gary was working on the bathroom remodel. My hand swelled up like a balloon. This morning, I had to take double meds because of it. So, there you go. Instant Karma = no more hours of Sims.

If I have just one soda pop, once in a month, I can guarantee that I will be leaning over the porcelain god all night, wishing that I hadn't caved.

While most people have to wait for the bad Karma of their bad habits to catch up with them, mine is like, wham, bam, here I am Mam. Now knock that off immediately and don't do it again! Because, you know that saying about needing to be hit over the head with a brick? Well, I'm one of those people that it fits. I will normally make the same mistake many times over before I learn. But with Lupus, I learn right away and the hard way.

So, thanks, Lupus. That instant Karma of yours makes it so easy to stop bad habits before they become lifetime habits.

Lupus has taught me to multitask like a boss

Thanks to Lupus, I can juggle whatever is thrown at me!

Well, you know. Example is the best teacher. And Lupus is one bad-ass multitasker. Oh ya. Lupus can simultaneously attack every inch of your body and every system, organ, blood cell, muscles, joint and bone in it. Don't ever get in a fight with Lupus. It's better to love, respect and emulate Lupus. Because she will make you her bitch if you let her.

Or, you can learn to be just as strong as she is. You can multitask right back at her. That's what I do. Bring it on, Lupus. I've got this covered. I can be a bad-ass too!

I can climb stairs with two loads of laundry, no laundry basket in sight and pains shooting up and down my legs like the fires of hell. Seriously, Lupus, are you threatening to break my back in two? Ya, well, dish it, Lupus. I can take it and then some.

I can make breakfast while simultaneously clutching the kitchen counters to keep myself from falling if I should pass out. Need a packed lunch and a pot of coffee too? No problem. I can even do it while whistling a tune if need be. No sense in making everyone else miserable after all.

I can carry on a lively conversation and nobody knows I have bile rising up in my throat and a migraine the size of Texas. They never will know it either because I don't want my day to bring their day down to Lupus level.

You need a ride? No problem. I'll take you anywhere you need to go even if I was worshiping the porcelain god all night long and only got an hour of sleep. I don't want you to have to take the bus, after all. What's more, I'll do it with a smile, singing to the tune of whatever music you choose, even if I have to grit my teeth from the pain the whole way.

Need an ear or a shoulder or just to know someone cares about your accomplishments? Here I am. Never-mind that while we're talking, I really do have ten other things I should be and am doing. Forget that my hands are throbbing and my day was filled with agonizing pain. I want to hear about your day because I care about you. Life is short and I want to spend all the time I can with the people I love.

Screw the pain. I want to focus on happy.

It sounds bad, doesn't it? Well, it is. But it's beautiful too. Thanks to Lupus, I have the strength to deal with just about anything that comes my way. Yup. If I can handle living with Lupus, I can handle anything, even the perfect storm. Lupus is one scary roller coaster riding bitch but I have her to thank for teaching me that all things are possible. Yes, even when they all come flying at me simultaneously.

So thanks, Lupus, for all the multitasking you throw my way. Thanks to you, I can throw that shit right back 'atcha and move on to the next challenge. I am Lupus strong!

Found that Margarita freeze-pop again. Thanks, Lupus?

Ha ha I remember when I wrote this random bit in the quotes below. It seems like so long ago. And you know what? That freeze-pop is still there. I found it again just the other day. Seriously, I am so not a drinker. Still, I do miss being able to drink if I wanted to. It's about the freedom, you know? On the other hand, Lupus is pretty useful in that department. Because even if I did want to drink, my meds would tell me no.

And here it is.... or was.... Whatever.

08/21/13 (Hey, that WAS a long time ago!)

“Guess what I found when I cleaned out the freezer today? Oh, Ya. I found a margarita freeze-pop. That's been in there for who knows how long. Not sure if it's still good. I think we got it for free at some event a while back. Like, a long while back. I also found a bottle of Bailey’s and another tiny sample bottle of Bailey's.

Now, don't worry, I'm no alcoholic. Well, obviously, or I would have known they were there.

But hey, you take your rewards where you can get them. I guess my reward for cleaning the freezer today was a hidden supply of girly type alcohol. Hey, I'm in luck, because, guess what? I'm a girl! Yay me! 

But, boo! Because I can't drink with my meds. Wait, maybe next time I forget to pick up my Prednisone, I'll have a back-up plan. Can you see me scheming and rubbing my hands together?”

So, times change and now I don't drink. Like, at all. Oh, it's OK if you do. It's just not for me. I've recently realized that even if I could drink now, I really have no interest in it. I had my time to be young and foolish. I used it well. Now I'm on to bigger and better things. I just love the way Lupus has of reminding me I'm on the right track.

So, Bye bye, Margarita freeze-pop, see you later. That's see, not touch. And thanks again, Lupus. Because of you I'm not drinking. Or even eating Margarita freeze-pops. Not that I would have anyway. LOL

Love for others with Lupus

Lupus is named for the wolf. Those who have it are just as strong. They have to be.

I'm not the only one with Lupus, you know? I do talk about it a lot. Still, there are so many people out there suffering from this crazy, unpredictable disease. It's tragic to say the very least. However, it can also be inspiring. Plus, I get tons of support from my fellow “Lupies” on a daily basis. After all, no one understands chronic illness like those who have it.

I don't have any resentment toward healthy people. In fact, it's just the opposite. I'm so glad to see other people living happy, healthy lives. It gives me great joy. It's just that when it comes to having someone to talk to about my health struggles, nothing beats someone who has been there and done that.

Other Lupies don't suggest unsolicited “cures” or pain solutions. They know Lupus is a permanent condition that's not going away. They just listen and empathize. Which is exactly what I need most of the time. And if I do need advice, they know how to give it without being pushy.

Other Lupies also understand when I'm too tired to do anything but sit and type. They know I'm not lazy because I don't have a “real” job. They understand that writing is my way of continuing to contribute to my household, even if I don't feel so good and never become a big writing superstar. They also get that writing isn't all I do around the house.

I really appreciate my fellow Lupies in another way too. I find them inspiring. In fact, I find anyone with chronic illness inspiring. This world is hard enough on healthy people. Getting through it with style when sick is even more difficult.

Yes, from pain to limited mobility to digestive issues to skin rashes to any one of 25 other crazy symptoms, my fellow Lupies triumph daily over this horrendous illness. I find them amazing. Plus, so many of them are so much sicker than I am. Which makes me believe I can kick this thing with a smile on my face just like they do every day.

So, thanks Lupus, for helping me find so many new, inspiring supportive friends. It's truly one of the best things about this disease.

Laughing my butt off at Lupus!

Yesterday, my grand-daughter shared the above cartoon on Facebook. I laughed and laughed and laughed before it occurred to me that some people might very likely find it offensive. Not me, though. You see, I laugh my butt off at Lupus every single day. I can't help it. Some of my struggles are simply hilarious.

For instance, there was my jegging adventure. I thought they might have a slimming effect on my swollen legs. They did. They also went right on, smooth as silk. Unfortunately, trying to remove jeggings is not as easy as getting them on when you have physical limitations. They got stuck around my ankles and would not budge an inch. I had to hop my crippled self to the nearest chair to remove them. That isn't all. I was having a bad hand coordination day too. My fingers were not working at all. I finally managed to work a loose section off each foot, step on it and pull up with my legs as hard as I could to get them off. Even then, it took several tries. No more jeggings for me. What a hoot!

Gardening with Lupus has provided me with many laughs. One day, I fell face first over a garden bed. It hurt like holy hell. I was stunned, to put it mildly. It was the first time I'd ever fallen since being struck with Lupus. I quickly realized that I was not getting up anytime soon, at least without taking a breather. Still, I managed to get a chuckle out of it. You see, I water the garden in the early morning in my nightgown sometimes to save time. So, I was lying there all sprawled out in my nightgown, soaking wet and muddy with the hose running on me. I felt like a crippled mud wrestler. I also couldn't help thinking about that commercial with the elderly women where she has fallen and can't get up. So, I texted that phrase to the boyfriend, explaining my predicament. Of course he expressed concern when he called me back. But as soon as he realized I was OK, we had a great laugh together.

I can't tell you how many times my “Lupus brain” as I call it has given me fits of the giggles. I'm a fairly intelligent person so when one of my old Lupus meds left me hanging in the memory department, I knew it was time to change meds. The final straw came about one day when I asked my grand-daughter the same simple question three times in a row. Her response? “Grandma, your Lupus brain is working overtime again.” Needless to say, I went off the medication that was doing that. But hey, it's all water under the bridge. Can't go back in time and not take it, right? And it was at least good for a chuckle.

With Lupus, I try to find both the humor and the good in every situation. For instance, when I can't sleep at night and spend the day napping, I just say to myself, “Hey, at least it got me out of the housework for a day!” Or when my digestive system “cleans” itself out for a few days in a row, I say, “Hey, I guess I don't have to buy those expensive cleansing herbs!”

You know what's the best thing about laughing at Lupus or myself, though? It's contagious. And if there's one thing my family needs with all our crazy struggles, it's a sense of humor. The other day, for instance, my boyfriend and I were watching the old X-Files TV series. They were studying a line drawing of Big Foot. No details. Just the outline. Without even thinking, my boyfriend blurts out, “Hey, look! It's me, naked!” (He's been trying to lose a few pounds and seriously, he doesn't look like naked Big Foot, really.) We both just burst out laughing. Nobody was offended or embarrassed and he's certainly got a healthy self image but that was funny, dammit!

Folks, it's OK to laugh at our own humanity. It's OK to get a kick out of our personal flaws (Which aren't really flaws, by the way. They're just a part of who we are.) And frankly, if who I am ever becomes a cold bitch with no sense of humor who's afraid to laugh at herself, well, never-mind that thought. Because I would never be that person. That's right. I hope I'm laughing my butt off at Lupus until the day it kills me. And if it doesn't kill me and something else beats it to the punch, well, the irony will have me smiling as I breathe my last breath.