The Things We Carry ~

 

We’ve all seen them.

There are all these quotes on FaceBook,

Pinterest,

Instagram,

and Twitter.

They seem so bold, inspiring, liberating……freeing.

Things like , “Leave the woman you were , in the past, because the future is bright. ”

And Lord knows, I’ve been guilty of sharing some of them.  They seem good.

But I was suddenly struck by a bolt from the blue , yesterday.

You see it was my 39th birthday .

15 years past the date when they said, I should not live.

And it dawned on me , as though the universe itself had spoken to me ,

in a moment so clear I could almost have sworn everyone around me had heard it.

Saying, “You do not have to leave the woman you were, in the past.

You do not have to leave the person you were as a child, as a teenager, or as a young adult.

We do not leave those people behind somewhere in the ether of the universe.

We carry them with us. Not as a weight, or a burden.  Not with hurt, or pain; but we carry them with us ,as knowledge.

Knowledge that lets us reach others. And wisdom to see that although there was hurt,

we grew tall and strong in spirit anyway.

We carry them as teachers, reminders that who we were then , is still valuable in the journeys we take today. We wear them as deeply as if they were  sewn on badges , celebrations  that we survived.

So I will not leave behind the child I was, the gangly teenager I grew into, or even the much -scarred woman I have become.

I will be all of those people , all at once; the child, the youngster, the woman.

And walk through this world with the quiet  knowledge

That in spite of it all,

I made it. 

It Wasn’t On the List ~

 

The sun is rising up over the trees of my hollow , painting the pines, the maples and the oaks with a magic that only God himself can bestow. The dark sentinels recognize that day is starting and gives way to the light.  It is quiet.  The kind of quiet that can only be found when we still ourselves.  No television. No cars.  Only the quiet of the reality that , no matter where we go, possessions don’t matter.  Outside in the forest packages tied up in bows , really have no value .

I’m sitting here in my little frame house, warmed by the fire ,of the wood -stacked by my husband (before he headed off to his job) , a handmade afghan on my feet ,  a tiny , furry dog making snuffling noises as she settles her way ever deeper into the cocoon she has made for herself.

It’s that time of the year again.  Where people seem to turn into frantic genetically engineered  gerbils stuck on a giant wheel that spins ever faster. I am often agog at the speed they are able to manage, and wait in a kind of  morbid fascination wondering if the wheel will fly off into some other galaxy at the current rate they are going. The stores are jammed packed with those who carry those sacred  lists ;   as though those pieces of paper somehow carry the keys to true happiness, or even the map to Ponce’ de’ Leon’ s fabled fountain.  Gripped so tightly , and conversing to some unseen person (  themselves?) , that I can’t help but ponder  if a trip to Bedlam might needs be in order.

I know they are doing their best , to make the ones who made those lists happy. That “perfect” gift . The end goal being , to see the lights in their eyes shine so brightly that all of the effort was worth it, thus granting them Le’ons  immortality. and that ever elusive JOY.  But…………….temporary.  Because those toys are  tossed aside by next month’s end, as the next “it” thing is discussed, in terms of  , “Well, NEXT year I am going to ask for ………………!” Bigger , better, more expensive. So back on the gerbil wheel the givers go.
Til suddenly their legs, finances, stresses, and sanity ;  give way, and the wheel comes to a grinding halt.  It is an unsustainable momentum……… the mythic fountain just out of reach.

For what has been obscured in the misty fog of store lights, faux snowdrifts, bedazzled costumes and the street hawkers is this :  immortality , the fountain of a memory of youth is not hidden in any of those things.  It’s hidden in the decisions you’ve made every day , of every season.  Summer; in laughing with those you love over some ridiculous joke . Fall; in feeling that full crisp air hit you while you walk down the street having a conversation that will never be remembered, but the moment will. Spring; in the first flower spotted by someone and you realize that Winter is truly over; and Winter ; all of Winter, when the weather forces you indoors to sit together talking about “Remember the time , we?”  and “I will never forget the day that we ……….”

Those are gifts. Not in department store boxes, not in bags, or in the ubiquitous gift cards of our era. THOSE. 

May we never become so jaded that we forget that THOSE are the  gifts worth remembering.

 

“Anybody Know the Number for “911”?

“Why would you even say that?”

“I don’t find that funny. “

“You shouldn’t laugh about chronic illness.”

“If you do that , people won’t take our issues seriously.”

“You really offended me by making that comment. “

These are all things I have have said to me, by people WITH chronic illness and even people WITHOUT.  Apparently, if you suffer from a disease, you get your “humor card” taken from you , and it is now NOT okay for you to be a happy person, or find any kind of joy in life.

So , I’ll start this next paragraph by saying, lest you think I have no right to speak on this matter, that my diagnoses in order are, Systemic lupus , heart failure,  Sjogren’s, Raynaud’s, POTs, dysautonomia, and EDS. So trust me, I have been around the medical merry-go-round. I many times have  pain that would put most people on the floor, have had so many surgeries, that they don’t give me enough lines on the medical forms, and so many allergies that they no longer even put them on the ER bracelets. I just get a big red one, that says, “See List”.  I have been sick since I was about 7 ( I was so sickly that my Grandpa called me P. , short for PeeWee) , and VERY ILL since I was 14. I didn’t get diagnosed until I was 19, so I had five years of basically every doctor saying to my parents, “She’s just lazy. ” and “She’s just wanting attention. ” So you develop a thick skin, and I developed  a sense of humor from the craziness of it all.  Sort of like OR doctors, ER doctors, etc. That gallows  humor.  I CAN and DO find the funny in just about any situation.

I’ve learned over the years that there are two types of people, when they find this out about me. They either “totally” get it, and love that I make a joke of it, or they are so offended they can’t take it.

But my question to them has always been. “Well what SHOULD I do? Should I be this joyless, soulless person, who is angry about things I can’t change or control?  Should I rail against the Doctors, the nurses, the techs and even God?” If your answer is “Yes!”, then my reply would be, “And what would that help?”

Rather , isn’t it better to find joy where you can? To laugh over the quite frankly ridiculous things that become necessary when you’re stuck with a lifetime illness?  Isn’t it better to be positive?

I am sorry if you think it’s wrong somehow , that even though I have more issues than you can shake a stick at, that I am happy anyway.  I am sorry if you find it strange that I am able to laugh , not BECAUSE of how things are, but IN SPITE of them.  And to be quite frank, and  I am sorry that even though things are hard, that you have no way to smile.

But I am NOT sorry that I AM able to find joy. I will not  apologize for coping with the circus that is my life , with humor.  ( P.S. Below, find an attached article about the effects of gallows humor and how it helps us cope in stressful situations. ) https://meded.duke.edu/practice/wp-content/uploads/2014/07/Gallows-humor-in-medicine.pdf

 

 

Are the Odds Even, or the Even Odds?

 

Pain is a funny thing. No, not funny “haha”, but  funny “intriguing” .  Pain is our body’s unconscious reflex to avoid something injurious, or to an injury or illness.  In theory, (  scientifically-speaking) it can only be felt in organisms with higher brain function. (Although how they would just that I don’t really know, might not WANT to know. )

Most people bless them, and their good fortune, have only known physical pain  from the standpoint of accident, injury, normal illness etc. They remember these things, but it isn’t an everpresent thought, or ongoing mental conversation they have to have.

But what would you do if you just woke up one day, and the pain never went away? EVER.  Some one once asked me what having my condition was like. I told them, “It’s like your body’s pain function is an old FM radio, with knobs that can be turned up or down. Most people , their knobs function like they should, being able to be set a certain way , pretty much most of the time. But my radio, the knobs are not only non-functional, they’ve been knocked off completely. So I have no way of even adjusting any of it.  It is set permanently at full volume. ” Yeah, fun times.

So pain HAS made me the “odd one out”. When you are 19 and are such an odd medical “rarity” that the doctors bring their students around to “observe” you.  When you are 21 and spending more time in hospitals , than your peers do in clubs.  When you are 25, and the doctor asks, “Where did you go to medical school ? “, (in all seriousness) , because you have more medical knowledge than his interns.

But it’s made me the odd one out in other ways as well. When you are 19, and can empathize with any elderly person, because you have so many medications.  When you are 21 and are able to help another person get a diagnosis, and help them realize, “I’m NOT crazy . This wasn’t all in my head!” , and when you are 25 and are able to educate others about many , many aspects of life-long illness.

You adjust. But you do NOT “get used to it”.  Trust me. Mind-numbing, bone -deep, “Oh  God kill me now.”, pain is NOT something anyone EVER gets used to.

So don’t be fooled by the smile you see  someone wearing. You have no idea what it is costing them.

How Bizarre~

The beautiful is always bizarre.  ~ Baudelaire 

I’ve never BEEN normal.   It was a certainty in my bones , a knowing even. An intrinsic feeling , yet not a difference that I felt was a problem. I didn’t SEE it as being a difficulty. I knew I was not like other people. I don’t say that as a form of braggadocio or as a way to say I was better or somehow on another plane. I came into this world , a wild animal. For most of my early years I refused to wear clothes, driving my mother to insanity. I thought going about skyclad was the best thing in the world.  When she DID manage to keep me clothed, it had to be boy’s clothes of the most ragged variety imaginable. Jeans, cutup, cutoff, dirty, t-shirts the greasier the better. My Dad’s castoff welding hats and goggles. A pair of corduroy Levi knickerbockers. Cowboy boots with the soles worn completely through. A set of leather chaps that a friend of mine had outworn. I spent my days out of doors ;climbing every tree within 10 miles of my house. Skinnydipping in the Little Missouri river until I was sunburnt to the color of red ripe watermelons we gommed from Granny Jo’s garden in the evenings.  I don’t know how my mother kept from killing me in those years; I never shut up, when I WAS home, which was seldom, I despised school work; what was I going to need all THAT useless information for anyhow, I wanted to be any and everywhere besides chained to that drudgery . I brought home any and every creature I could find , that slithered , crawled or flew, and was sure that both my mother and sister would find homes for them, and be just as fascinated as I was. (  I was wrong on both counts many times. ) Come to think of it, I don’t know why my SISTER didn’t kill me in all those years. I’m sure she had just cause. She was all the things I wasn’t . She was clean. She was a whiz at school, quite dedicated to it actually. And she actually kept her clothes ON. She swore on many an occasion, that “For the love of GOD, Nette, you are adopted. I swear. You actually belong to some nudists somewhere!!”  Heh.

I guess , to me, life just all seemed so bright, amazing, full of things to see. It still seems that way. Everywhere I go now, I still wonder why people want to be “normal” . And the funny thing is they struggle so hard to do this thing they call “fitting in”. What IS that, anyway? I had an interesting conversation with my niece, just the other day.  I was asking her , about a certain person , “Why is he dressing that way?” ( Meaning goth, emo, shopping at HotTopic, you know the whole ‘look’) She said , “Well, he’s making a statement I guess. Trying to stand out. ” So I asked her, “But if EVERYONE is doing that now, dying their hair, getting tattoos, going “goth” , and shopping at HotTopic, are you really making a statement? It’s not. It’s the new ‘normal’, isn’t it. ”  She didn’t really know what to say to that.  See, I don’t have a single tattoo. I don’t dye my hair technicolor. I’m not some trendy gender. Been married to the same guy for almost 21 years. I don’t have a nose ring, or some other odd piercing.  I think people ought to be respectful to others , and pretty  much live and let live. Wow.  In this day and age, guess what? I’ve become the new bizarre. And to quote Baudelaire, “It’s beautiful. “

Welcome the Waiting ~

 

I had both a saddening and inspiring conversation yesterday on a FaceBook page I follow.   It posts funny and interesting quotes , with the kind of things that people usually can smile at , or find something to perk their day up.  Well, while I was scrolling I saw a quote that said “Everything that’s difficult , you should be able to laugh about. ”  Underneath , a young woman had written, “Well, what about terminal cancer? Chronic depression?  Unending pain?”  And I suddenly felt very sad.  I felt compelled to reply to her , so I wrote, “Well, I can’t speak for terminal cancer, as I haven’t had that particular wellie, but I have had depression , suffer from more chronic health issues than would fit in this paragraph, and pain that would drop a bull-moose, and YES, I have laughed AT and THROUGH all those things, as crazy as it sounds. Once you get to a certain point, it all becomes so ridiculously bizarrely fantastically insane that this should all happen to one person that all you CAN do is laugh.”   She replied that she no longer even had the energy TO laugh. She said, “I have lost my joy, and I don’t know what to do to get it back again. How do you find your joy with all you have going on in your life?”

I didn’t even have to think. I knew exactly what to tell her. I’ve learned so much in my more sick than healthy years.  I said this, “I understand. My way of dealing has been to cut out everything absolutely unnecessary in my life. Toxic people. Toxic situations . Read more of the things that bring me joy. Spend more time outside when I can. Be with the people I truly love. Unplug from all the garbage on television and internet. Eat the food I like, even if it’s not necessarily healthy, lol. Laugh at ridiculous things. Just take stupid good care of my self , even if it seems selfish. Like insanely long baths, if that’s what I feel I need. Stop when I’m tired. Which is often. Tell the doctors what I think. Even if it’s NOT what THEY want to hear. Make it about the things I TRULY NEED. Journal, and write, and go back to the things I loved when I was 10 and 15 and even 20. I blog, I run my lupus support page. I speak my mind about the things that I think are important. Like being kind. I color . I Zentangle. I listen to good meditative music. I listen to trashy 80s metal, lol I sing, and take photographs and write bad poetry  ”  This has been my way of finding myself.  You have to. There will not always BE happiness, or even laughter. But I do believe there IS always JOY.  Sometimes we must find the joy in the waiting, the joy is in the fact that we are making it one more minute in this craziness we are dealing with. 

Don’t get me wrong, I have days where sometimes I wonder where the joy will come from, but it pops up in the funniest , most surprising places , when I least expect it. I refuse to give up on it.  I hope to always, always be able to ……………..

Unsaid~

 

 

I was  in the doctor’s office again this morning . ( Big shocker there, right? Heh. ) No, with lupus and it’s many lovely cab-riding co-morbid leech-y partners sometimes weekly visits are a given . Sometimes even MORE than one visit per week is something you just say , “Meh.”, to, at this stage.  I’ve been feeling puny as my Daddy says since last week. Without going into gory details, ( Oh, who am I kidding……..tossing the lunch monkey, making “the noise, that noise that shall not be named” as my teenage sons say in dramatic tones,  general all  -over pain,  congestion of the size that back-hoes are needed to haul away, and just basically wishing I could curl under my floofy grey ginormo cover and dis- a-frickin- pear) . I finally gave in today and went, where my nurse Cynthia gave me the “look” , meaning ,”And you didn’t call me last week ‘WHY , YOUNG LADY?!?”  Sigh. I know. ‘Cause I’m a moron. General knowledge at this point.  Anywho, that tidbit of miscellany aside, she got me all vital-ed and everything , and I saw the doctor , who’s a peach.   If you can say that about a jolly 260 pound linebacker sized gent who looks like he crushes coconuts in his spare time, but is really the kind of dude who takes his little girl to get her nails done Disney Princess style. I might say it, but maybe not , like to his face. 🙂

 

So turns out , I don’t ( By the grace of God , have the actual flu or strep , which IS going around, GAG me with a thousand troll toenails. ) I DO however have a severe sinus infection and probably like bronchial junk which goes with. ANYWHOOOO. So this next part requires kind of a backstory so that you can understand the following without me seeming like a total and complete loon.

See , I’ve been sick, for a very , very long time. Since childhood. And in the early 80s there was not a whole lot of knowledge about auto immune disorders, especially in children.  I mean , there is still not a slew of things known about it now, even in adults and back then in children , you might as well  have been an alien. So I was in the hospital.  A LOT.  Pretty scary experiences for a small child, you have to admit. But I was actually pretty lucky. I got to go to the hospital I was born in . And see the doctor who delivered me, and the nurses who worked there? I went to school with their kids, who were all my age. And our hospital was always a little bit old fashioned, and I remember it had the cast iron beds. The neat what people consider  the “vintage” kind now.  Our town was so small that the mayor was the X-Ray tech.  The hospital cleaning lady , was my church’s secretary and roll taker. One of the nurses was the police chief’s wife. I’m named after the delivery nurse who helped my Mom in labor.  I said all that to say this, one of the nurses there was always particularly close to me. She just seemed to always know when I needed something. I always tried to be brave, because I know being sick freaked my parents out. They didn’t know what was wrong with me , in those early days, and didn’t really have a way to pinpoint it. They just knew I was frail and in a lot of pain.  But Cynthia, she just knew how to set it right. With me, AND with them.  And she had this great laugh, when you heard her in the hall, you just somehow knew, no matter what things would be okay.

The funny thing is, that’s her that  works in my local doctor’s office now. THAT Cynthia.  While I was sitting in exam today , waiting to get my injections for my infection, I heard that laugh, and started to tear up. I couldn’t help it. She comes in with the shots all ready to go, and looks at me. I told her, ” I need a hug.  When I heard you in the hall laughing, it brought back so many memories of cast iron beds, and scary days, being afraid, and not knowing what was going to happen , or even if I was going to make it. But I’d hear your laugh in the hall, and suddenly I’d just know , ‘Cynthia’s coming. It will be okay now. ‘ ”  And then I couldn’t speak. I was just hugging her and bawling my eyes out. You just don’t know how much stuff like that means to someone.

She told me , that she had needed that today. So I was glad I said it.  Oh how blessed I have been to have had my care team from PCH and Mercy Medical. My hometown. And if you have people like that in your life, tell them! Tell  them now. Don’t wait. You don’t find them everywhere, trust me. I have trusted these people with my lives , countless times, and they have earned my gratitude, my heart, and yes, I tell them without shame, before it is gone, the time has passed, and they aren’t here anymore. I tell them, ” You mattered to me!! I love you!”

Crossings ~

I’ve always been fascinated with eyes. From the time I was small , and realized I could draw , I was determined to get the shapes and forms of eyes realistically captured on paper. Human eyes, animal eyes.  I can’t remember a time in my life when I didn’t love looking at people’s eyes when they spoke. It seemed to me they spoke volumes about what it was they were really saying.  I never really realized until I was grown that although a person could be telling you one thing with their words,  that their eyes could be telegraphing something  quite different.

I guess there’s quite a whole psychology behind that kind of thing now, and educated folks who know about that kind of stuff would say I probably have some kind of a complex or something. That whole Nietzsche quote , “And if you gaze long enough into an abyss, the abyss will gaze back into you. ” , and all that jazz.  I’m not so sure that’s what old Friedrich meant.   I’m more inclined to believe in the Biblical standpoint of Matthew 6 :22  “The light of the body is the eye: if therefore thine eye be single, thy whole body shall be full of light.”

So I guess, really it’s my unconscious way of gauging whether I like you or not. My mother has always joked that I have an instant people -radar . Either I like you or I don’t. First impressions, ALWAYS. And I think it’s the eyes. I can just kind of tell , ” Yep. Me and these peeps , we’re gonna’ be friends.  Or these people are shady, I don’t like ya’ now, and I ain’t gonna’ like ya’ later.  Maybe that’s wrong of me. I’ve always tried to trust my intuition in those kinds of things, and in most cases it’s served me well.

Besides , eyes are quite beautiful , don’t you think? The colors, the shine, the slight twinkle that says they know something that you don’t. And that maybe, just maybe if you look long enough, they might let you in on the joke.

Very young eyes,  eyes full of life, and of course my very favorite , the eyes of the very old. The things they’ve seen and the secrets they hold. If I could have a camera to capture it all.  But of course , the films are theirs. Memories only they choose, to keep wound on the reels of the 8mm cameras of their minds. And rightfully so.

  Because there is a word for this soul gazing  ~ Opia ~ The intensity of looking someone in the eye which can feel simultaneously invasive yet vulnerable .

 Perhaps Nietzsche WAS right in a sense,  but it’s not an abyss at all; it’s a crossing,  a sharing  of sorrows , of joys , of things unsaid,  and songs unsung, and a time passed between two like souls.

 

Against the Flow ~

 

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.  

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

ADD ADHD Alzheimer’s Disease awareness Arnold Chiari Malformation awareness Childhood Hemiplegia and stroke awareness Chronic and Acute Pain Craniosynostosis Awareness Crohn’s (Crohn’s and Colitis Foundation of America (CCFA) uses orange and blue in promotional materials) Colitis Awareness Campaign Cystic Fibrosis awareness Domestic Violence Awareness Campaign Elder Abuse Awareness Epilepsy Fibromyalgia awareness Hidradenitis Suppurativa Awareness Ribbon Leiomyosarcoma Lupus awareness Macular Degeneration March of Dimes Meningitis Survivors Mesh Awareness Mucolididoses Neuropathy Awareness Pancreatic cancer awareness Premature Birth (Also Pink and Blue according to some organizations) Pancreatitis Retinitis Pigmentosa Rett Syndrome Sarcoidosis Sjorgren’s Syndrome Spirit Day and victims of homophobia Thyroid Cancer Trisomy 9 Awareness
Lavender Awareness Ribbons	Cancer awareness (all kinds) Craniosynostosis awareness Epilepsy awareness Gynecological Cancer Hypokalemic Periodic Paralysis Infantile Spasms Rett Syndrome
Periwinkle ribbon	Acid Reflux (GERD) Eating disorders awareness anorexia bulimia Eosinophilic Disorders Esophageal cancer Gastric Cancer Irritable Bowel Syndrome(IBS) Pulmonary hypertension awareness Small Intestine Cancer and Stomach Cancer
Orchid	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	Hodgkin’s lymphoma awareness Testicular Cancer

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 

Win, Lose, or Draw…..

Happiest of weekends to you EveryBUDDY! I hope today finds you having a blessed one. It is cloudy , grey and gloomy here today in my neck of the woods, so I reckon it’s going to be a jammies and “bum around” day , for me. Whatever your plans are, I hope you have plenty of spoons to get all you need accomplished.

Anywho, we’ve just got three letters left in our series, and then I’ll be on to write about something else.  🙂 I  am interested in hearing your points of view, and if you have something you’d like to know, or you’d like for me to cover here. I’ll take all comments into consideration.  Without further ado, here is the list so far, and then today’s thoughts.

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

S. Sorry …..You don’t have to apologize for being sick!

T. Talk….. talk to those around you about what’s going on.

U. Ultraviolet protection

V. Vascular involvement ~ It’s a thing.

We’re all the way down to the letter “W” .  To me in this disease, the letter “W” has always stood for “Winning”. Now that might seem like an odd thing for someone with several horrible chronic illnesses to use to for that letter. I know some people would say, “Winning? How in the world are you winning?”  .  And on the face of it, it seems counter-intuitive. But bear with me, and I’ll explain.  Because of my disease,  I have discovered that I am much stronger than I ever knew.  I have found out that people as a whole, really DO care about other people. (I mean, of course , you get the people who are jerks, but that’s really THEIR problem, not mine.) I have  learned to be much more compassionate , to people who are struggling. (It makes you see the entire world through the lens of , “What might these people be dealing with , on a daily basis?”) I have realized that we ALL need other people, that no one should have to go through their life, feeling alone. I discovered so many things about myself, and the people I travel through this world with, at a very early age.

 

So to me, that IS winning. No, I didn’t win the genetic lottery, obviously.  But it doesn’t mean I can’t make a winning hand with the cards I was dealt in my genetic stack.  I will keep playing the cards I have, and keep on “refusing to lose”.

I hope you  too, can find at least one thing, that you feel like you have won at, despite everything.

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