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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Short-lived.

 

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It is Spring.

Or so they say.

The first day of that season,

which calls to new things. Green and bright.

The vernal equinox.

Equal parts,

glitter, and night.

I find Spring to be short-lived.

Perhaps it’s maudlin of me.

Spring seems easy. So colorful; flowers gold and purple.

But Spring is hard and born of death.

All the rotted things of Fall and Winter ,

feasted on by the bright young cannibals of  the now.

Fantasy wardrobes spun from worm-tossed bulbs left under snow,

last year.

 

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.

 

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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.

Keep the Beat Going……….

 

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Happiest of Tuesdays to you EveryBUDDY! I hope this finds you having a great one. We have had that ridiculous stomach virus here at our house, so the last couple of days have been not fun . It is apparently very contagious and is making its rounds through several different states. If it is where you are at, make sure you are careful. Us lupies do not need any help with being ill. So, that being said, on we go, with our “26 Days”……

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

Which brings us to “V”. February is National Heart Month. Heart disease is the leading cause of death among women, and in Systemic Lupus heart disease can be a significant heath risk. “Vascular” health among those of us with serious flare activity is a major problem.  Although I have congestive heart failure due to mine, with 35 to 40 %  ejection fraction, and peripheral neuropathy, and have had a stroke,  I am no expert on the subject, by any means.   That being the case, I thought it would be better to direct you to some articles …………

http://www.lupus.org/resources/15-questions-cardiovascular-issues-with-lupus

And here is a good one also ………

http://www.lupusny.org/about-lupus/fight-lupus-body-and-mind/caring-your-cardiovascular-system

Please , whatever you do, take the best care of your heart that you can, keep that beat going strong………. ❤ ❤  ❤

 

If I haven’t said it today, I love you! with all my ❤ and 🙂 always ((HUGS)) ~ Ruby J.

Soak up the Sun…..(or maybe not.)

It’s the weekend! WhootWhoot! I hope you are enjoying yours so far.  Mine shall be mostly under the radar , I think. A trip to the grocery store, maybe. That’s about as crazy as I get these days  🙂  We are coming to the end of our ” 26 Days ” Series . We have 5 letters left! It’s been a pleasure sharing all of my experiences with you, and I hope it has been some help for you. So far our list 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

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

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

That brings us to “U”  .  “U” is a very unusual letter when you think about it. If someone asks you to come up with a word that starts with it, you probably have to think for a few minutes.  But in fighting  lupus , believe it or not , there is a word that starts with the letter U that they warn us of right off the bat. And that is Ultraviolet rays. Any rheumatologist worth their salt will tell you either at your first appointment, or very soon thereafter, “Try to avoid the sun. ” “If you DO go out, wear long sleeves.”  “Get a good UV blocker and apply it generously. ”

I generally explain it to people as , “I’m basically a vampire. ‘AAAARRRRGH!!! The hideous light of the DayStar!!!!’  ))makes shrieking noiseswhilemeltingintothefloor((( that type thing”  .  They usually get the gist of it , when I explain it that way. And it’s basically true.

The sun can cause your autoimmunity to kick off, making your body attack itself. So sunscreen is your friend.

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I really like this one , for everyday. It’s light, but still provides 21SPF.

https://www.covergirl.com/beauty-products/face-makeup/foundation-makeup/clean-matte-bb-cream?&utm_source=google&utm_medium=cpc&utm_term=%2Bcover%20%2Bgirl%20%2Bbb%20%2Bcream&utm_campaign=Covergirl_Search_Brand+Awareness.BMM&utm_content=sHAOlfH0s_dc%7C115881177878&gclid=CLbk7-nB9tECFQaewAodwTgLyg

You can also buy sunblocking clothing; long sleeve shirts, hats , light jackets , etc.

Solumbra offers tons of choices in these areas

http://www.sunprecautions.com/

However you go about it, just make sure you protect yourself. The sun can cause your rashes, incidence of skin lesions, and other not-so-fun things to increase. Not to mention the fatigue that it can bring.

There are, a few things along the way that I have noticed about this.

One benefit of it I have noticed is, my skin is in great shape. Loads of sunscreen wearing, no sun -worshiping , has kept me wrinkle -free.

But there is a serious downside. I am , and probably forever will be, deficient in Vitamin D. I have to take loads of it , to keep my numbers up. This is definitely something that your doctors should keep checked, as well.

So there you have some of the long and short of sun protection. Do your own looking into what works for your skin type. What you like as a style, and what keeps you healthy.

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

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.

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”

girl-sorry

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.

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