One step at a time to the max

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

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

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

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

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

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

Oh well, one step at a time. LOL

I wish people were like Lupus

This wheelchair is in my near future, you guys.

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

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

And yes, I also struggle.

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

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

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

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

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

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

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

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

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

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

Appreciation. Get you some!

When sick is normal

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

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

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

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

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

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

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

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

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

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

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

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

Doing it with Lupus

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

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

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

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

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

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

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

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

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

The many faces of Lupus

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

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

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

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

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

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

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

I know who my real friends are now.

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

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

I have great empathy now.

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

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

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

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

Lupus relieves me of deadlines

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

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

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

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

Would you believe that my garden loves Lupus?

Plants are healthier when gardening with Lupus.

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

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

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

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

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

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

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

#NoHazardousRunoff

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