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.