About Me~, chronic illness, humor, inspirational, Uncategorized, Writing

Love Means~

Good morning EveryBUDDY! I hope you are having a wonderful Monday so far . Mine is , as my Nan used to say, So-So. She would like President George Washington say, “Cannot tell a lie.” , so if asked would not say she was fine, but only “So-so. ” We are now only  7 letters away in our “26 Days Series” I hope you guys have enjoyed coming on this journey with me, and hope it has been some help to you. I have enjoyed writing it. If you’ve been keeping up, the list so far has been…..

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

N. No

O. Okay

P. Perfection ~ Not going to happen 

Q. Question everything!

R. Research. Research. Research. 

So that brings us to………the letter “S”

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Such a tiny little word. Five little letters. And we say it all the time. With our illnesses or maybe even combinations thereof, we somehow feel that we must suddenly apologize . To our families, our friends, to our loved ones, to our bosses, to any and all things. It’s our fault. It’s our fault that we’re in pain. It’s our fault that we ‘re fatigued. It’s our fault that we’re nauseous. It’s our fault that we’re in the hospital. AGAIN. Okay. Let me just stop you right there. I will tell you what my husband tells me practically daily. JUST. STOP. “These things are not your fault. You have absolutely no control over the things you have NO CONTROL over. You need to stop apologizing. It’s a draining activity and we can’t waste our energies on things we have no spoons for. We did not ask to get sick. We did not ask to get dealt this crappy hand of genetic cards. But here we are. We cannot re-shuffle. We must play. So don’t apologize. Just BE. Be you. Be what you can, with what you have, where you are. That is definitely NOTHING to be sorry for.

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

About Me~, chronic illness, humor, inspirational, Uncategorized, Writing

GOOGLE MD. ~ and proud of it.

Hullo to all of you on this fine Sunday EveryBUDDY! I hope it finds you well! I am up and at’em and have been since about 1 a.m. with the prednisone jitters. Just another one of those lovely side effects. I hope your weekend has been going well for you! Mine has been decent. Not great, not awful, just decent. Sometimes that is all we can hope for. Anywho. Here we are , Haha. R. Down to the letter, “R”  Here is the list 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 

J. Rid yourself of Junk

K. Keep Kindness as a philosophy

L. Laugh long, laugh often!

M. Medications

N. No

O. Okay

P. Perfection ~ Not going to happen 

Q. Question everything!

So , today’s letter is “R” is another really elegant letter , really . It’s the first letter in my name, and one of the first ones I learned how to write. Today it stands for “Research.” When you are first diagnosed with a chronic illness, you kind of are just in a daze. You are just fogged over with this haze. The thoughts just crash in on you with this horror…….”Oh crap. This is my life now. What is going to happen to me? ” So you just take the stack of prescriptions that the doctor hands you , go down the hall to get your blood work done and you leave with a kind of weird numbness. Only later does it hit you that you asked NO questions, you thought. You didn’t ask what would happen. You only did what you were told like a good little patient. You were “compliant. ” And some people continue in this pattern, over and over , for fear of upsetting the “Almighty” the physician.

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This is VERY dangerous behavior. And I allowed myself to nearly be killed by it . By my first rheumatologist. I don’t think it was intentional on her part. She just was very busy , and very arrogant. Lots of doctors suffer from an overload of patients, and the “god complex”. This is why research is so important.

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READ. READ. And then read some more. And YES, as much as doctors will tell you Google the heck out of stuff. I don’t care what they say. The internet is a very valuable tool . We cannot afford to not make use of it. In our fight against what we have going on we must use every tool we have at our disposal. Because you know what they call a doctor who graduated at the very bottom of his class in medical school?  ———–Doctor. Yeah. So there ya’ go. I make no apologies for my snark . Heh.

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

About Me~, chronic illness, inspirational, Uncategorized, Writing

60 Questions ~

Happiest of weekends to you EveryBUDDY! I hope this finds you with a totefull of spoons to spend doing what you want to do today with the people you love. I’ve well and truly got the crud ( a U.T.I.) , and it is cold, cold, cold! here. I did not sleep worth a flying fig last night, and I am exhausted. So my weekend is not looking real peachy. Anywho. You guys do not need to hear all about how crummy I feel, lol 🙂 We are all the way down or up to the letter “Q” in our “26 Days” Series! WhooHOO! If you’re following , or just joining in, the list 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

N. No

O. Okay

P. Perfection ~ Not going to happen 

Which brings us to  “Q” .  “Q” is beautifully odd letter. It looks gorgeous written , especially in calligraphic form. I’ve always had a strange fascination for it, when I was very small  I had a pen set, and I would practice writing it , over and over again. And in my mind it stands for “Questions” . My Daddy has always said that I have always asked more questions than any person than he has ever known . I talked very early, learned to read when I was about 3 years old, and have never stopped asking questions since.

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I wanted to know everything, and I wanted to know it now. I was always pretty sickly , though. I was very small. My Grandpa called me P. Which was short for PeeWee because I was such a runt. Which was pretty much a foreboding of what was to come. But it has taught me what ALL people with chronic illness need to know . You need the power to question. Question the doctors. Question your family. Question other people. Question the research. Question the pharmacists. Question the establishments. Use the power of the question everywhere you go. And don’t you dare let anyone make you feel bad for it!

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It’s OUR lives we are talking about here, and we must use every tool in our tool boxes to live to the utmost. No QUESTION about it. 🙂

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

About Me~, chronic illness, humor, inspirational, Uncategorized, Writing

It Ain’t Happenin’ ~

UGH. Double UGH. I’m miserably behind. Or maybe I’m just miserable, I dunno. I have struggled for the last two days to even stay AWAKE , much less find ANY type of motivation to write. I hate that . I hate it with the flaming passion of a thousand suns. I enjoy writing. It is one of the only things that I will actually do when all else fails. So when I cannot find the motivation to do it, I feel broken . I feel as if lupus has stolen that last little bit of something that makes me tick. If you know what I mean. So , double UGH. AGAIN.  Excuse the self-pity , there. Anywho, I’m back.  We are 14 days into our “26 Days” series and if you are keeping up, or just joining us the list currently hits at

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

N. No

O. Okay

So that brings us currently to ……“P”.   Which is actually another difficult letter . It’s something that so many of us struggle with and it adds to our illnesses because so many of us happen to be type “A” people . I don’t know if that happens to be a coincidence, a side effect, or just an anomaly. It’s PERFECTION.  And let me tell you first -hand , you are never going to find it. Especially with chronic illness.

 

 

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I was raised to keep very clean house. Things are supposed to be spotless, right? All the laundry put away, all the dishes done, all the bedrooms done, clean sheets put on, bathrooms completely done up, the works right? And there’s nothing necessarily wrong with that. If you’re in a shape to do it, and maintain. But let yourself get struck by never ending fatigue, pain that feels like you’ve been struck by a semi, your joints as if they’ve been somehow super-glued together, and suddenly even MOVING off the sofa, much less moving that laundry basket , it’s just not going to happen. Then your OCD sets in, the anxiety sets in, so the fatigue becomes even worse, the stress level ramps up, your lupus suddenly decides to flare to new heights and you’ve now escalated yourself into hospital -level chaos. Good show , old girl! Great times, what? So. Perfection. Is it actually worth all that?!? I had to decide. Are those boxes in the corner really causing anyone all that much distress? Or am I the only one who really cares. Does anyone really notice that there is a bit of dust on the knick knacks on that shelf? Or am I over reacting ? In the famous words of that Disney song……….”LET IT GO.”

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I promise, you really WILL feel much better. And if anyone says anything about it, let THEM go too. HA! Oh, and If I haven’t said it today, I LOVE YOU!! with all my ❤ and 🙂 and as always ((HUGS)) ~ Ruby J.

About Me~, chronic illness, humor, inspirational, Uncategorized, Writing

“Where Have All the Flowers Gone?”

Top o’ the Tuesday to ya’ EveryBUDDY! The sun is shining here in ole L.A. That’s Lower Arkansas, to the uninitiated. It is however not warm, but very briskly cold, so we are sitting under the comforters with the heat going. I’ve got chicken in the oven for dinner, (if you live in the South , dinner is what you call the noon meal, supper is the evening meal, confusing, I know!) , but anywho. My blood pressure is running low today and I am having a devilish time keeping my body warm. It is hard to type with cold fingers, I have found. So I am typing best I can. We are getting closer to the end of our “26 Days ” Series. If you have stuck with me this far, thanks! If you just got here……….the order has been …..

 

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

N. No

So today we will do “O”.  This for me is one of the more difficult letters , because it stands for O.K.  I’ve been told many times in my life I am a relentlessly positive person. I have been told that I can take any situation and make it brighter. I am not trying to brag on myself, these are just things I have had people tell me. However , this does bring me to a conundrum. “What do I do when I am having a TRULY, HORRIBLE, AWFUL, BAD, NO GOOD, DAY?” 

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See, I believe in positivity. I REALLY truly do. I don’t think a negative attitude really helped anybody get anything done in life. It poisons your own soul and all of those around you. But at some point in your chronic illness journey you WILL HAVE days where it is going to be impossible to find the good in it. And you will have to be okay with that. It really is okay. I have had to train myself to believe that, though. I have had to learn it is okay to be angry. It is okay to be sad. It is okay to be tired. It is okay to cry. These things ARE all okay. Here are some things however that I don’t believe ARE okay. It is NOT okay to take your problems out on other people. It is not their fault that you are sick. It is NOT okay to withdraw into yourself forever in a state of despair. It is NOT okay to admit permanent defeat. It is NOT okay to have NO sense of humor whatsoever. ‘Cause dude. Some of this stuff IS funny, and if you say it’s not? HA. You’re lying to yourself. Things like this.  A chronic illness warrior is like…………………

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I just wanted people who think I am relentlessly positive, or that I never have a bad day, or that I am some sort of mutantly cheerful person, to know, it ain’t all tiptoe through the tulips with Tiny Tim here, all the time. And I’m okay with that. We have each other’s six, when it’s that way, and I’m so glad. That’s how it should be , so luckily those days don’t last that long.

Whatever kind of day you are having today……….remember……..

I LOVE YOU!! with all my ❤ and 🙂 and always ((HUGS)) ~ Ruby J.

About Me~, chronic illness, humor, inspirational, Uncategorized, Writing

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.

About Me~, chronic illness, humor, inspirational, Uncategorized

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.