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

Against the Flow ~

 

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Fair warning.   I like to give fair warning. If  a post might seem long, or  scatter-brained, or even if some of the topics or wording might seem offensive to some.  I had no idea until just a few years ago that even the very discussion of illness is considered offensive to some.  There are things called content warnings,  and trigger warnings.  I don’t really do that here.  It would be great if the world were all cotton-candy and lollipops but it’s not. Unfortunately, in the real world there is potential for your feelings to get hurt.  So I said all that to basically say this post might be long, and you can feel free to leave, I won’t be offended. So onward, and upward!  🙂

Anywho, This month , May, is Lupus Awareness Month.   For those of you who follow my blog, you know that I have lupus, and have had for about 20 years now.  I run a lupus support site on FaceBook  called Lupus Sucks ! Lupus Support and Humor . I’ve run it about 5 years now, and have about 9,100 followers.

https://www.facebook.com/lupussuredoessuck/?ref=aymt_homepage_panel

That’s not to toot my own horn , by any means . It’s really rather to toot the horns of the amazing people on my page.   My BUDDIES I call them.   They’re amazing. They rally around each other.   They grant  words of encouragement.  They lift us up when we’re in the  hospital  , offering ways to get by  when we’re  having wretched stays in those most horrid of “Hiltons”  🙂  We’re able to help each other find doctors, share tips on what works best for exercises on already hurting bodies,  and most of all , my favorite part , is find humor, yes, I said find humor in this crazy life that got chosen for us.  By God , or the Universe,  or Fate, or however you decide the great wheel of life chooses these things.  002c9f165a729c2482566b023003f4e3

I’ve often told people if I hadn’t been able to laugh I’d have died a long time ago.  I hope that I have been able to grant some small bit of that humor to someone else. It really is okay to laugh. I decided a long time ago , I was not going to let this crazy disease and all it comorbid compatriots to steal my joy.

Which got me to thinking about May being Lupus Awareness Month, and all the things that come with it. I’ve been trying to do research about Lupus Awareness Month. When it started, WHO started it? Why is it in the month of May?  Why is our symbol the butterfly? WHO made these decisions? Was there a committee formed? Who was on the committee? Did the people on the committee have lupus? Who decided that purple was a good idea for our color ? Seeing as how this is the list of disease that use purple or some variant of it for THEIR awareness

Lavender Awareness Ribbons
Lavender awareness ribbon
Periwinkle ribbon
Periwinkle awareness ribbon
Orchid
Orchid awareness ribbon
  • Testicular Cancer. There is debate about the color for testicular cancer awareness and ribbons, however orchid, a purple/violet color, has long been recognized as the official color for testicular cancer.
Violet ribbon
Violet awareness ribbon

Are we really using the MOST effective color in our push to get people to be aware of the disease we are affected with? I have been to many sites over the last couple of days , looking for ways to get flyers with info, or ideas for spreading awareness in even my very small town. They offered no ideas , or assistance. No free printable information.

So I guess, I’m confused. Confused and a bit angry.

To be perfectly honest, I’ve never been angry that I have lupus. I’ve always looked at it like I got dealt a lousy genetic stack of cards. I was never angry at God. I didn’t rail at Him , saying , “Why me? ”  But I find myself feeling angry at the lack of support from these for lack of a better word “mega-corporations”. These are the people who are supposed  to be backing us up. With ideas, with materials to make flyers, with community research . They are the people that are supposed to make things HAPPEN. 

 

On that note, did anyone ask YOU , did YOU want the butterfly for the lupus symbol?

If you could choose an animal , what would you choose , and why?

Did anyone ask YOU , if May was the best month for Lupus Awareness Month for you?

If you could choose a month, which one would you choose , and why?

Did anyone ask YOU  how you felt about purple as a representative color?

Would you have chosen a different color , and if so , which one?

Why are there NO (Non-Profit) materials geared towards the average “LUPIE” ?

What kinds of materials do you think would grab the attention of the  public?

(Meaning ~ Female , between the ages of 15 and 44~ in other words , we’re young and cool not some doddering bunch of people in nursing homes )

We’d appreciate cooler , more age appropriate , materials geared toward that audience.

How do you best think we could attract the attention of the general public that we are trying to educate?

 

All that being said, I know we all have our struggles. With mobility, with being out in the sunlight, with fatigue, with emotional and stress issues. I know some of us have physical limitations which prevent us from getting out and dealing with the public. I know there are those of us who can’t speak on the phone, as it causes anxiety. I am not expecting anything to be done THIS May , but wondered if we might pool our ideas, and resources; creatively ( ideas, publishing , marketing) charitable, ( those with access to businesses who might help us with flyers, stickers , pins or buttons,etc. ) or simply working up a way to have it mentioned on a local news station. Please feel free to let me know any ideas that you have. And remember, our lupies are women between the ages of 15 to 44, but of course , the more people who are aware is even better.

I want so much to make a difference in the next year.  And I BELIEVE that we CAN DO IT!!  So maybe, just maybe it’s time WE 

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

Yakkity Yak……..

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Happy HumpDay EveryBUDDY! I hope this finds you having a good one so far. It has been a crazy roller-coaster week for me. I went to see the neuro-specialist yesterday and received some long awaited answers. ( I know we are still doing our “26 Days Series, and this will tie in, I promise. ) I have had neurological problems since early childhood; severe headaches, attention difficulties, etc, although , you know that kind of thing was not really treated in my generation. In my teens the headaches became unbearable, and with pregnancy ; let’s just say, they were the kind where you went to the E.R., and begged to be put out of your misery. After finding out I had systemic lupus at 19, the neurological problems only snowballed. Neuropathy; that lovely feeling of sticking your extremities into a light socket repeatedly (ZZZT!ZZZT!ZZZT!) , brain “fog” ; having done  a  simple task ; like writing a check , a million times , and then suddenly not knowing how to do it (What do I put on that line again?!?) , and then the final blow ,  an actual stroke that for a couple of days left me paralyzed from the neck down (Oh crap. My nose itches, and I can’t even move my hands. This is a problem I had NOT anticipated. ) . And we just yesterday found out left me with permanent mid-brain damage. We HAD thought I was having seizures of an epileptic variety. The specialist, who is tops in his field is almost certain I am not ( He figured this out when ……….He said …………move your eyes left………….I attempted to , but the whole ROOM felt like it moved left, I hereby proceeded to simultaneously attempt to toss the lunch monkey on the good doctor’s Italian leather shoes, and then pass out .) Which is apparently hugely autonomic and NOT epileptic. This is both GOOD and BAD news. The good news being , this brain damage is static . It is where it is , it is not going anywhere, it won’ t move, or get any worse. The BAD news being , it is where it is, it is not going anywhere, it won’t move. It also can’t really be treated.  (In the good doctor’s defense, he stood right by the exam table, and patted my hand, reassuring me, while I tried valiantly not to fall of the edge of the Earth. He seems like a very decent bloke. ) There’s nothing to be done for it. This place where it is damaged controls the wake\sleep center of my brain, the pupil function of my eyes, and the temperature control of my body. So basically, I have no way to tell my body to shut off, go to sleep, shut my pupils against the sun, or regulate itself against heat or cold. And I wonder why I feel lousy. Heh. Anywho. The doctor wants one more test to absolutely rule out seizures, but he is almost certain the midbrain damage is the cause of all my troubles. The reason I said all this, was to say, 18 years ago , when I was diagnosed, I would never have told a single soul all of that. I would have been embarrassed. I would have said, “People don’t need to know that. ” “People will laugh.” “People might make fun of me.”  But these days , I think it is so important that I use my experiences to tell others what can and DOES happen with lupus. I didn’t know that heart failure, stroke, neurological, and autonomic failure was so rare in lupus. Most rheumatologists will only see one or two cases of it in their entire careers. So if I can talk to other people, and educate them about what I am going through, I want them to know. Lupus is so much more than just joint pain. Talk to someone. If you know someone with lupus , ask if you can talk to them about it. Ask them questions. Talk to them about their feelings. Talk to them about this stupid disease. Talk to them about the lack of options that we have. Talk to them about the lack of research. Talk to them about how they feel about the lack of doctors, and care. If you HAVE lupus, talk to your family. Talk to your friends. Talk to your doctors. Talk to other lupies. Don’t isolate yourself. I will basically answer any question openly, if people ask honestly. I learn, they learn………win, win.

And because I got totally sidetracked, today’s letter was “T”, by the by. “T” for talk.

Oh, and if I haven’t said it yet 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.

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

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

I Think it’s Time to Fly Away ~

 

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Hey howdy hey, everybuddy! I hope today finds your basket full of spoons, and that you are brimming with ideas of things you want to do. 🙂

So far in our journey we’ve covered letters A-H, and I hope maybe some of it has helped you.

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!

Today brings us to a subject that I have struggled to bring up,  but I have promised to be honest in all my writing. I mean , if you can’t be honest , why bother putting it down to paper, ( or screen , as it were. )  So here goes.b4795f73acc52313ef76394d71f8e54a

Today’s letter is obviously “I” , and in my long journey with chronic diseases, I have found that believe it or not, sometimes, just sometimes, ISOLATION helps. That might seem harsh. And I guess probably to our families , and loved ones, who care so deeply about us, it probably is. But being this sick is overwhelming. In a way that , unless you’ve been there, you can’t POSSIBLY understand. Doctor visits, nurses visits, specialists visits, therapy visits, pharmacy visits, family visits, ( and although they mean well, sometimes this is hardest of all. )  “How are you feeling?” ,  “What do the doctors say?” , “Have you tried that new medicine?”, “Is it working?” . People crowding you in from every side, with every question they can think of. Until you feel you have no air left to breathe, no answers for any questions, no identity except this horrible unseen monster that has taken over every waking moment of your life, and you feel you absolutely MUST GET AWAY! FAR AWAYFARAWAYFARAWAY someplace where you can just let all thoughts of this stupid disease melt away, if only for an hour. This is the hardest thing to explain to the people we love. We want them to feel like they can ask how we are, of course! We want to share that. We want friends, and those in our lives, to care, and feel like they know if they are saying the right things.  But sometimes, there JUST IS NO RIGHT THING TO SAY.  So when it all starts to pile up into a huge steaming heap of medications, I.V. infusions, chemotherapy, endless rounds of blood draws, and doctors with no answers, we just have to withdraw. (Temporarily , mind you. I’m WAY too much of a ham to ever forgo my “audience” forever 🙂  But if we need to do that, we ask those who love us, “Please give us this space. This time. This isolation . ” I promise, we’ll come out feeling better for it. And I know that’s all our loved ones want. The best “us” available.

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

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About Me~, chronic illness, Uncategorized, Writing

Inch by Inch~

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I had a better day yesterday! Hooray! Right? Well, yes obviously. Any small improvement over the day before has to be something right? And I agree. I got up, got what I call “decent” clothes on (meaning clothes suitable for town) and went to the pharmacy. That was my goal . See, “G” for goal, lol. And that was it. Spoons depleted, body crashing, spending the rest of the day on the sofa, wishing for my body to decide to , “Dear God, just let me feel some sort of normal.

But we HAVE to have goals. I figured that out a long time ago in this journey. If you don’t have a goal set for yourself , by the end of the day it makes you feel very very depressed. Trust me. I have been WAY WAY WAY loooooooooooow down on the totem pole of , ” What did I even get DONE today?!?” And it’s not a good feeling. See , the key to that is , set a small goal. And NO goal is too small!!  Brush you hair! ( Hey , there are days when my arms are the equivalent of overcooked linguine, and just laugh at me when I say that. )  Finish coloring a picture in one of your books!  Make microwave food! For the adventurous , walk to the mailbox! Any little thing counts. I gave myself two gold stars for loading the washing machine, yesterday, so that was a big deal for me. Don’t let anyone else tell you that this kind of stuff doesn’t matter. They don’t know. There was a time I was wheelchair bound, and let me tell ya’ simply making it to the bathroom was a HUGE GOAL for me.

Feel proud of yourself no matter what your goal  is.  Celebrate you. And never , ever, ever let someone make you feel less. You rock warriors!! and in case I haven’t said it today, I  ❤ you !! With all my ❤ and 🙂 and as always ((HUGS)) ~ Ruby J.

About Me~, Uncategorized, Writing

The Substance of Things Hoped For~

 

 

 

082259cecc6245411ec469c2cff7c222I was very , very ill yesterday. And literally slept from 7p.m. the night before, until 5 :30 p.m. last night. I don’t know whether it was a lupus flare, if I’m come down with any number of the bugs that have come through our area in the last couple of weeks, or if it’s just my body trying to recuperate over other things . What is that saying , “The best laid plans of mice and men often go astray. I had such huge plans yesterday, to conquer the laundry, the loads of school books that need to be organized, and the kitchen which definitely needs to be organized. But had no spoons to deal with. So I crashed. And I realized that todays word needs to be “Faith” . Now I know a lot people will see that and think , “Oh that’s religious, and you’re going to go off on some religious spiel. I make no bones about the fact that I am great believer in God, and in his teachings. But I know many other people of many other religions who follow other tenants. The point is, when you have chronic illness, you have to faith of a certain kind. Faith that we will make it one more day. Faith to conquer our fears, that we will be alright one more day. Faith in the science of medicine. And yes even faith in God. I honestly believe my faith has carried me this far. and I could not have gone alone. We need to have faith that one day things will be better. If we don’t the world turns out to be very lonely place that leaves us wondering , why are we bothering to try anymore. I refuse to allow that to happen to me. I honestly believe there are bigger and better things out there, and if we follow the voice of faith and love. We will find those better things. We WILL MAKE IT!! and the end results will be worth it. Never give up, never lose hope, and keep your faith with you at all times. It will carry you through. Oh and by the way, I love you ! With all my ❤ and 🙂 and as always ((HUGS)) ~ Ruby J.