I Say, “Nay Nay”.

Happiest of Mondays to you EveryBUDDY! I hope this finds your week starting off stellar. Mine is a little less so. I have been sick for about two days now with some sort of stomach virus\ “oh, great what is this?!?” . You know the kind I mean. It appears from seemingly nowhere, and then decides to make your life miserable for an undetermined amount of time. Today the stomach part is better and I sound like a strangled chicken, because my throat is so sore. But anywho. Onward and upward we go, right? Strangled chickens be danged!

I missed yesterday’s post , for obvious reasons, so today will be the letter “N”, in our “26 Days ” Series.

So if you’re keeping up the list so far is…..

A: Acknowledge and Accept

B: Breathe.

C. Find  Comfort

D. Get a Doctor or team of them you can trust

E. Exercise ~ even if it’s just a scoonch ( Hey ! Scoonch is a word!)

F. Have Faith

G. Set a Goal , even if it seems small

H. Hugs! Everybody needs them!

I.  Sometimes we need, Isolation 

J. Rid yourself of Junk

K. Keep Kindness as a philosophy

L. Laugh long, laugh often!

M. Medications

That brings us to “N”. Now let me tell you this letter will stand for one of the most important things you will ever learn with chronic illness. It stands for “No. “So repeat after me…………………

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It really is true, I swear!! I am a “yes ” person. I always have been. I like making people happy, and I want people to smile. I never really cared if people “liked” me, I just enjoy doing things for other people. Which is not a bad thing, of course, until doing things for other people overrides your own sanity, well -being, and actual physical health.  I always felt like saying “No.” , was selfish. And then I got suuuuuuuuper sick.  But I was like, “It’s okay, I’m SuperWoman, right? I can still work, take care of the house, take care of all these other obligations, and be fine!”  The mind was willing………….the body said “Haha!”. It wasn’t happening. Everytime I tried to prove that I was indeed “SuperWoman”, I ended up in the hospital. Because that’s what happens when you go on too little sleep, too much running to and fro, and just enough insanity.  Lupus will kick your rearend down to the floor and say , “Stay there. ” So here comes the “No.”  I realized saying it was not selfish. I could say “No.” and people would still be alright.  As in , “No. I can’t make 200 cupcakes for Bible School for next week. ”  or telling one of my boys, “No. I cannot have 10 of your friends over all weekend. ” or of course the ever popular random kind -of a – friend who suddenly decides you are BESTIES and you absolutely MUST do this favor for them. Again , I say “No.”  Seriously. (add eye roll here) . It will not be worth it. And if people who ask can’t understand, here comes the other hard part, you must evaluate whether they are really your friends at all.

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You must honor yourself. You only get this one go at life. And saying “Yes” to any and all things is not good for ANYBODY , really. Even people in fantastic health. For us, it’s downright disastrous. Make your list of things that you will say “Yes” to. And stick to it. Don’t let other people bully you into doing something that you know will leave you in the bed for a week. You are worth the “NO.”, I promise.

Oh, and if I haven’t said it today, I LOVE YOU!! with all my ❤ and 🙂 and as always ((HUGS)) ~ Ruby J.

I Got Pills……..They’re Multiplying..

Okie  dokie artichokies! The world can now go back to its regular scheduled programming. 🙂 I. E. we are back to our “26 Days , 26 Ways” series.

So if you’re keeping up the list so far is…..

A: Acknowledge and Accept

B: Breathe.

C. Find  Comfort

D. Get a Doctor or team of them you can trust

E. Exercise ~ even if it’s just a scoonch ( Hey ! Scoonch is a word!)

F. Have Faith

G. Set a Goal , even if it seems small

H. Hugs! Everybody needs them!

I.  Sometimes we need, Isolation 

J. Rid yourself of Junk

K. Keep Kindness as a philosophy

L. Laugh long, laugh often!

And now on to the letter “M”, and it’s one of those things that we all have to discuss at some point in our illness journeys. M , for Medications. Sigh. I have had an up and down relationship with medications. Always have had. They are a double-edged sword of the worst\best variety. And there are so many opinions on them! Some people are all for it. Their attitude is, “If the doctor prescribes it, it HAS to be a good thing!”. Then there are people who are so ANTI-MEDICATION that it’s practically a religion with them.

 

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These are the people who will give you the whole, “Big pharma is a scam. They only do this stuff to make money , and if you take that you’re going to do nothing but make THEM rich, and yourself sicker!!” . But let me just say, I happen to be of the  middle of the road opinion on this matter.  I’ve had some really great experiences with medicine. At one point I took Imuran for about 2 years, and my lupus went into remission! That was amazing. But I’ve also had some very-not-good experiences with medications. Case in point, Ambien. I took ONE Ambien , and ended up in the hospital for three days hallucinating and talking to someone I called “the green men. ” Or so  my husband tells me. I don’t remember ANY of it. Morphine is another Nay-Nay drug for me. Doesn’t do a thing for my pain, and shuts my respiratory system down. So I believe you put that in the don’t column. 🙂 And then you have the heavy-hitter. Prednisone. Oh , joy of joys. Satan’s tic-tacs. At my worst I took 80 mgs of prednisone every day for 2 years.  Yeah. Heh. Fun times.

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Prednisone really CAN be a wonder drug. Without it, I know that my heart would have been lunch-meat for the zombie that is lupus. But it leached all the calcium from my bones, leaving me with the skeleton of an 80 year old lady. It caused me to have hearing loss, cataracts, and sent me into adrenal shock when they misjudged weaning me off of it.

So there you have it. The good,  the bad, and the very bad. So what’s the solution? Do you stay away from all medications? Do you take everything the doctors want to throw at you?

What to do ? First you have to research, research, research! Read up on it, ask millions of questions , and then ask more. Weigh the benefits against the risk. Sometimes as my Momma says, “The juice is just not worth the squeeze. ” Meaning, the side effects may be more horrible than the original problem.  Secondly, I just think we need better options! Lupus and auto immune diseases are somewhat of an orphan industry. The pharma companies don’t seem to think there are enough of us to really put in the research for it to make a profit for them. So in that case , the anti med people are right. We need genuine caring researchers and scientists to be interested in a cure for lupus! We need better, more effective medications that will be target specific.  Until then, we must make do , make the best decisions we can, and work in concert with our doctors to make sure that we are getting the best care that we can for ourselves and those who love us.

Oh and by the way, if I haven’t said it today, I LOVE YOU!! with all my ❤ and 🙂 and as always ((HUGS)) ~ Ruby J.

Inauguration Day~

In any moment of decision, the best thing you can do is the right thing, the next best thing is the wrong thing, and the worst thing you can do is nothing.  ~ Teddy Roosevelt 

That’s all a man can hope for during his lifetime – to set an example – and when he is dead, to be an inspiration for history. ~ William McKinley 

You have to think anyway, so why not think big? ~ Donald J. Trump 

It’s always good to be underestimated. ~ Donald J. Trump

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I’m taking a break from my lupus series to say a little about today. Now I make it my habit to never discuss religion or politics , as I figure most people’s minds are generally made up one way or the other on those subjects. But , this year has been some year hasn’t it? It’s been a long year, and it’s been a historic year. When I was little , I was a huge history buff. I loved reading about the Presidents, about American history, and I actually liked watching things like, “The McLaughlin  Group”, “60 Minutes”, and watching inaugurations. When I was about 5 or 6 years old, President Bill Clinton, who was then campaigning to be Governor of my home state, Arkansas, came to my hometown, and I got to meet him. I told my Mom I wanted his autograph, and when she asked me why, “I told her that , ‘That man is going to be President one day. ‘ ” . I still have that autograph , which some might consider to be a dubious distinction these days I suppose. But suddenly , when Obama became President, the fun had gone out of it for me. The liberals seemed determined to make anyone who didn’t agree with them miserable. How dare you have a conservative viewpoint? It was almost as if they wanted us to be sorry for “being American.” And as if they were sorry for all the things that had made us great for so long.  We’re brash. What of it? We say what we mean, and I know lots of other countries considered that less than classy. We’re loud, we’re rowdy, we don’t mind sticking up for ourselves, and if we don’t throw the first punch, we’ll sure throw the last one. These things seem to bother uber-liberals . Then came the Obama administration. And we were made to feel like less than citizens, because we didn’t agree with his policies. It wasn’t okay to have a dissenting opinion. Because if you did, you were racist, bigoted, ignorant, yukking-it – up yokels. Then came the campaign race of the century. And we were made to feel even MORE like it wasn’t our country anymore. Hillary Clinton  thought we were “deplorable”, thought “what difference at this point does it make?” , speaking about the deaths of the  very people whose job it is to keep us safe. Lied so much that she seemed to think we all must have the I.Q. of a good sized cabbage.  Then came Trump. And he was ALL the things that I mentioned before, brash, said whatever he thought (for good or naught), he’s loud, he’s often rowdy, and doesn’t mind sticking up for himself. People said he’d never have a chance, they said he’d never get the nomination, they said no one would vote for him. Not in a million years. But the press, the naysayers, those “in the know” , didn’t count on how tired we were. Tired of being told that our opinions didn’t matter, because we were the “little people”. Tired of being lied to.  Tired of feeling like our America didn’t matter anymore. But he DID get the nomination, he DID get elected. And I’m watching the inauguration right now. And I feel hopeful. I feel like politics is interesting again. I feel proud to be American. I don’t know what kind of a job he’s going to do. No one does! And that’s the thing. THAT’S AMERICAN!!  Everyone should get the chance to dream big, and get the chance to show what kind of job they can do. Maybe he’ll be great, maybe he’ll suck.  But as of right now, I feel proud. And in the words of the newest President , “What really matters is not if the government controls the country, but that the people control the country.  And that the nation exists to serve its citizens. These are just and reasonable demands , of a righteous people. ” I pray it is so. God Bless President Trump, and God Bless the United States of America 

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Laugh Long…………and Prosper

 

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Happy day that’s the day before Friday, everyone! 😀  No, seriously. I quit really counting what day it is, unless I have a doctor’s appointment to go to , or someplace I just have to be. I remember when my Grandpa was still alive, he was a self-employed farmer, and he would always ask me, “Well, PeeWee, what day is it?” And I used to think it was odd, but now I know , he didn’t NEED to know. He could do what he wanted. He was in his 80s and could have cared less really. He’s on my mind today. It’s raining again, and I think if he were still here, he’d be itching to have his garden plowed up. Funny , the things that strike you sometimes. He always knew just how to make me feel better. One of the best things he could do was tell stories. And sometimes without even meaning to , make you laugh. So in his memory today,  our letter being “L” and all, I think we’ll have a post about laughter.

 

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So if you’re keeping up the list so far is…..

A: Acknowledge and Accept

B: Breathe.

C. Find  Comfort

D. Get a Doctor or team of them you can trust

E. Exercise ~ even if it’s just a scoonch ( Hey ! Scoonch is a word!)

F. Have Faith

G. Set a Goal , even if it seems small

H. Hugs! Everybody needs them!

I.  Sometimes we need, Isolation 

J. Rid yourself of Junk

K. Keep Kindness as a philosophy

So we’re up to “L” or down to it, whichever way you want to look at it. There are actually a lot of good things I could say about “L” for us lupies. Things to do that start with “L” . Like lather in a luxurious bath.  Ladle liquid chocolate on literally anything. 🙂  Lay lazily on the lawn . But , hey , I had to narrow it down to one, okay? And I love to laugh. My Daddy is a huge practical joker, and also tells amazing hysterically funny stories. Like the time , he and his brother tried to catch a wild turkey using nothing but their hands.  ( They did, by the way. ) I got my Daddy’s sense of humor and my Mother’s good looks, so I think I did pretty well. Of course, mine and Daddy’s idea of funny is sometimes NOT other people’s idea of funny. I remember once when we were in the pre op area , not the actual rooms where they set you up with drugs, heh.  But the actual lobby thing. I was waiting to , of all things, have a hysterectomy. I was 24 years old. My Daddy and my husband came for backup. Well , Dad gets to telling jokes. Not rude jokes, ( he’s not like that.) But I mean, funny, split your sides, I can’t breathe jokes. He was trying to ease my stress , and make me feel better. If you could have SEEN the looks on some of the people in there, it was crazy. They acted like butter wouldn’t melt in their mouths.  As if, “How dare we be having a good time?!?”  , “This is a hospital, have some dignity!!”  Well, I hated to tell them, but if you’re in pre op, you’re about to lose your dignity pretty quick , anyways, when they put you in one of those “I Cee U” gowns.  🙂  But in all seriousness, I know things are tough in hospitals. Bad things DO happen there. But bad things happen everywhere. And if I had to be gloomy every time I WAS in the hospital, I’d have a pretty sucky outlook. If I was melancholy every time I felt bad, I would literally never HAVE a happy day. That’s what “normies” don’t understand. This IS EVERY DAY. From now til whenever. And I refuse to let it make me continuously sad. I want to laugh. I want my children to remember my sense of humor. I want other people to know it’s okay to laugh about this crazy thing we have going on . This crazy thing called life.  My Daddy has always said, ever since I can remember, “It’s ALWAYS better to laugh than to cry. ” So celebrate what you find funny! Watch the best funny movies, laugh with your favorite comedians, get your giggles in where you can. I promise , you won’t be sorry. Now, I can’t promise you won’t get some strange looks, lol, but that’s really their problem, isn’t it?

Oh ,and if I haven’t said it today, “I LOVE YOU!! with all my ❤ and 🙂 and  as always ((HUGS)) ~ Ruby J.

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Kill ’em with Kindness (Well,you know metaphorically, and what not. )

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Top o’ the mornin’ to you all my spoonie warriors! It is once again dreary and grey , with that drizzle that seems determined to make everything a soggy mess. The world seems completed muted of color when it does that, which I think is why it makes me sad. I’m a great lover of color. Great , large , looming , vivacious splashes of it. But anywho, I digress. We’re supposed to be getting on with our “26 Days, 26 Ways” series . ( I apologize for the randomness of all of this, my husband will tell you I suffer from ADOS . Attention Deficit OOH! SHINY!!) So back on track I go. 🙂

So far we’ve got………..

A: Acknowledge and Accept

B: Breathe.

C. Find  Comfort

D. Get a Doctor or team of them you can trust

E. Exercise ~ even if it’s just a scoonch ( Hey ! Scoonch is a word!)

F. Have Faith

G. Set a Goal , even if it seems small

H. Hugs! Everybody needs them!

I.  Sometimes we need, Isolation 

J. Rid yourself of Junk

Today’s fabulous letter is “K” , of course and it’s one of my favorite letters. Not really sure why, K’s just look elegant when written. Even in print. But “K” today will be for kindness .

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Firstly, you have to be kind to yourself. This is a very difficult thing to do , for most of us chronic warriors, as we are generally very “Type A” people , who almost always make sure that everyone, everything, the dog , the cat and the goldfish , get taken care of, before we take care of ourselves.  It’s a very hard habit to break. And of course , all those things DO need taken care of, that’s not the point. The point is, when was the last time you were genuinely kind to yourself?  Allowed yourself a break? Did something strictly for you, other things be hanged? Bet it’s been a while , right? But it’s so , SO important! We use all our energy, will-power, brain -power, and strength , holding other people together , that we forget that our bodies need rest, recharging, and yes, just flat out being kind to yourself. Buy yourself a little something for no reason. Spend 10 minutes longer in the shower. Say “NO” to something that really doesn’t interest you. It will be okay, I promise.  And when you’ve taken care of yourself , secondly comes being able to share that with others!

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When you HAVE that extra “oomph” from conserving your spoons, you’re able to give to other people. To truly listen. To have that time to write a friend. To visit someone on a good day. To use that cliche’ , “To pay it forward.”

Even the Bible tells us, Thou shalt love the Lord thy God with all thy heart, and with all thy soul, and with all thy mind. This is the first and great commandment. And the second is like unto it, Thou shalt love thy neighbour as thyself. On these two commandments hang all the law and the prophets.

Have you ever noticed that unhappy people , don’t really like themselves? They don’t know how to be kind to themselves, so they can’t give it away.  When we are truly kind to ourselves, we will have loads of kindness to share with the people we meet.  And to me, making someone else feel loved, or to see that smile when they feel that kindness, sometimes it’s just the medicine the doctor ordered.

Oh, and if I haven’t said it today, I LOVE YOU!! with all my ❤ and 🙂 and as always ((HUGS)) ~ Ruby J.

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Pack Up Your Troubles in a Great Big Bag, and Put it on the Curb

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Welp. It’s a grey and dreary Tuesday here, in my corner of the world, and my body is certainly feeling it. On top of the troubles the weather brings, I think I’ve managed to come down with some sort of , for lack of a better word, “throat gunk”. UGH. Sorry . Probably too much information there. 🙂 But , anywho, I ‘m up, I’m breathing, and the world is still turning , so we’re good, right?

Hard to believe we are almost halfway through our series of “26 Days, 26 Ways” . Here’s where we are so far.

A: Acknowledge and Accept

B: Breathe.

C. Find  Comfort

D. Get a Doctor or team of them you can trust

E. Exercise ~ even if it’s just a scoonch ( Hey ! Scoonch is a word!)

F. Have Faith

G. Set a Goal , even if it seems small

H. Hugs! Everybody needs them!

I.  Sometimes we need, Isolation 

So obviously today’s letter is “J”.  There are lots of great words that start with J, that I could have gone with; JOY , JAM, JOLLY…….but I chose a different word, and one that I think really applies to us chronic warriors. “JUNK”.

 

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And I don’t necessarily mean physical junk, although Heaven knows I have my fair share of things that I need to be organizing, and de-cluttering. ( Ain’t nobody got spoons for that. ) But , what I really mean is “emotional junk”. You know the kind I mean; people in your lives who just cannot be satisfied unless they are dumping their emotional garbage on you. They never have anything good to say. Their lives are always in turmoil, and they dump it on you.  Which in certain instances is okay. Everyone needs a friend they can vent to. But the problem becomes when these people never reciprocate . They don’t ask how YOU are. They don’t want to know about your struggles.  And then you have a whole other class of people who manage to fill your life with junk. And this is the really sad part. It’s your family. They don’t believe you’re really all that sick. or “Why can’t you come to Johnny’s party ? You were fine yesterday!!” , and on and on they go , piling their emotional junk on you , until you just want to scream.  I will tell you something that my very wise Daddy says, “Ain’t nobody will do you over like family, and sometimes you just have to cut them off. ” If you need someone to give you permission, I hereby grant you permission to excise toxic people from your life.  This is our health, and in many , many cases , our very lives that depend on not having those stresses.  Choose people who will only support you in your journey, de-clutter your life of junk. It makes a world of difference.

Oh, and if I haven’t said it today, I LOVE YOU! with all my ❤ and 🙂 and as always ((HUGS))~ Ruby J. 

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Installation ~

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We think we cover it so well,

Layers and layers ,

to conceal  the imperfections,

those things we see as flaws.

Always afraid , they’ll be stripped away

by life’s unfeeling jaws.

But then you collide,

with another soul.

Whose vision seems almost  preternatural .

How did they come so close?

And then you realize,

their layers , are your layers.

Separate coats of gloss ,

but from the same brush.

The graffiti the same.

And suddenly , you are seen.

through all the misted layers of choke-filled smog  that smother the world.

You are heard,

in all the noise that blankets the city,

and then in that cacophony ; of brick and steel ,

taxis  and hearts rushing ,

the art coalesces.

Ruby Jeanette Woods 

Street Art by Eduardo #Kobra 

 

 

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