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, 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

Self-Soothing, Sweaters and Socks ~

Day Three ~ Comfort ~

Hello! So far in our series 26 Days, 26 Ways (to feel better with lupus) , we’ve learned to

A: Acknowledge and Accept, and

B: Breathe.

So in that same vein, today’s word is Comfort.

 

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Firstly, I feel like something HAS to be said, before we discuss today’s topic. We as chronic warriors seem to , as a whole, put ourselves last. We’re forever rushing around, trying to help every-one and every-thing.  In spite of our pain, or maybe BECAUSE of it we hate to see other people hurting, and will do everything in our power to make sure they’re okay. And of course it’s a wonderful idea to look after other people who are in our situation as well.  But the thing that HAS to be said is this, “When you have a chronic illness , sometimes you must put yourself first. ” I think we as lupie warriors are some of the kindest, most compassionate people there are, and sometimes we shoot ourselves in the foot that way. I’ve been diagnosed with lupus and its lovely cohorts for about 19 years now, and I still struggle with the fact that it’s okay to put my own name on top of the “Needs Help” list. That being said, here are a few things that I’ve found really make a difference in the Comfort department.

  1. Easy -on – the skin , clothing~ Such as leggings, and soft tunics.  Sweaters and socks. Now you might be saying to yourself that’s a splurge item, and you might be right. But to me, it’s definitely worth spending a bit more money to have clothes that don’t pinch, or squeeze you in the wrong places. They have tons of leggings to choose from at our local Wal-Mart, and you can’t beat them for the price. For tunics, or midi dresses to wear with your leggings, Amazon has so many to choose from you could have a different look every day!
  2. Sunglasses ~ prescription or over the counter ~ One of the jollies that lupus brings with it is, sensitivity to light. Light bulbs; incandescent and flouros both, along with of course , the sunlight , it can make you feel as though you even need shades indoors.  I like buying sunglasses at DollarGeneral, because very seldom do they ever cost more than $8.00 a pair. I have to wear prescription eyeglasses, so when I buy tinted lenses at DG, it’s good that they have pairs large enough to wear OVER my prescription glasses. I usually have anywhere between 3 and 4 pairs , at any given time. A pair in my purse, one for the car, and anywhere else I think I might need them. Doing this has sure cut down on the number of migraines, and eyestrain.
  3. Sunscreen~ Just as with our eyes, lupies have a “MEhhhh……..” relationship with the sun, concerning our skin.   The sun can cause our rashes to worsen, cause us to break out in hives, or even cause our disease to flare. Even “normies” need to find a brand that works for them, and apply it every day, no excuses! Skin cancer does NOT sound like fun , as one person dies of melanoma every hour.
  4. Medications ~ both prescription and over the counter~ There is nothing worse than having a flare , and NOT having your go-to medications on hand. When I am struggling with increased symptoms ;  nausea, vomiting, severe joint pain, body ache, and blood pressure difficulties seem to be the run-of-the-mill. I once had a rhuematologist tell me, “Never let your pain get so far past the level you can cope with. Because by the time it has gotten to that point, it will take extreme intervention to get it back to a manageable level. ” . And he was right. Everyday maintenance is SO much easier than damage control . Keep a tight record of your meds , so that a middle of the night pain cycle does not catch you unaware.

5. Mr. Sandman ~ And last but certainly not least ~  A quality mattress and pillows ~ Sleep is a HUGELY important piece of the wellness puzzle. The average HEALTHY person needs 8 to 10 hours of sleep per night, and we as chronic warriors will need more than that , as our bodies try to repair themselves. We will often sleep 11 to 12 hours a night, with a  couple -hour nap during the day.  Everyone’s wants and needs  in this area will be different. Maybe you need prefer firm, or super soft. They even have the SleepNumber mattresses now, so both parties can adjust the firmness to suit them.  This will of course be up to the individual person.  I myself,  always enjoy having lots of pillows for my side, as well. Fairly firm, I use two for my head, and I  can’t do without my body pillow to keep my old knobby knees from touching one another. (OUCH!)

These are just a few of the things that I practice , in order to make myself more comfortable , every day . If I listed everything I’d need a blog just for that! 🙂 And I’m sure there are things that you would add, that I don’t have mentioned here. The idea is, to make the list your own, with the things that YOU need to make your journey easier.

I hope today finds you doing the best you can, with what you have, where you are. With ❤ and 🙂 and as always ((HUGS)) ~ Ruby J.

About Me~, Uncategorized, world affairs, Writing

Thirty Eight and Counting

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Thirty-eight. That’s the age I’ve turned this year, and 13 years longer than the doctors gave me to make it without a heart transplant. They told me , “MS. Woods , if you don’t get one , by 30 you’ll surely be dead. And that’s WITH pumping your body full of ungodly amounts of medications that I can’t even pronounce, and that you might be glad that I don’t list the side effects of here. Needless to say, sometimes you might just wish to keel over from the heart related condition, rather than the medications.

Thirty -eight. Ever since I was little I’ve had a somewhat interesting relationship with numbers. Some might even say a compulsion. How many steps is it to the mailbox? 34. How many tiles are in a certain bathroom? 12 over and 10 across. It’s kind of a calming thing to me, I suppose. Numbers were just another thing that were brought into play with the births of my sons. They were born exactly 2 years, 2 days , 2 hours and 2 minutes  apart. And they ‘ve been inseparable ever since.

Thirty -eight though, even though I’m not really superstitious . I just thought it’d be fun to know some things about the number that is supposedly  affecting my life this  year.

  • 38 is an even number.
  • 38 is the sum of each row in a magic hexagon.
  • In Norse mythology, the number 38 was said to represent unnatural bravery.
  • There are 38 surviving plays written by William Shakespeare, how sad is that , really, this great genius of a man , and all we have left of his plays is thirty -eight.

Thirty -eight. That’s probably closer to the amount of medicine bottles I have, or even the amount of doctor’s visits I make. But you can’t look at it like that.

Thirty -eight. The amount of smiles I’ve  received from World War II vets who spent the hour in the waiting room telling me their stories. Or maybe I even got thirty -eight hugs from people I didn’t even know.

Okay, Okay, Sometimes I have to be honest. Some days, I get thirty -eight vials of blood drawn, and do good to make it to the parking lot again. Some days I have to line up one of those hospital visits that might end up lasting thirty eight days.

But truth be told, it really is like I said. It’s only numbers, and I don’t put my faith in them. As much fun as it is, to say, “What a neat coincidence that is! ” or “How fun it is to notice the comparisons between things!” , I KNOW the ONE who came before there was even such a thing AS time. And who will be here long AFTER time will be something no one will ever remember.

And really, what is 38 in comparison to that?

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About Me~, Uncategorized, world affairs, Writing

Carry it with you when you go………

 

 

10392064_1026918694047470_4501905245649217180_n (1)Did you just ever have one of those months where it all seemed to pile up on you ? The news , the negativity , the gossip, the baleful oil of the sheer sliminess piling up in wave upon wave until it  just seems determined to pull you under the weight of it? That’s what it seemed like this last month. So much so that I turned off my FB , my Twitter, my blog, and all my communications. That’s not all that new of a step for me. I have been known to go off-grid for as long as two years without even a television. When my husband and I got married we owned no computer, no television, no telephone, no washer or dryer, and lived 10 miles from the largest chain store. Lest you think I was some sort of a hermit, I worked at a library, had lots of friends, enjoyed chatting  with certain people, and not just with “conspiracy nuts”. But anywho, I digress. It’s 2016 now, and apparently in this century it’s  considered en vogue to have  a certain number of such  kooky friends. There however seems to be a pallor hanging over the universe these days. If you so  much as even dare to breathe a smile in someone’s direction it is deemed a hostile action. I ventured forth into town to do my weekly shopping and it was as if I had forayed into a war zone. “How dare I smile in the general area of the shoppers in the aisle I was on?!?” It was as if I had thrown poison darts in the path of their cart! “What right had I to be happy?!? What reason had I to be so cheerful in the store for crying out loud?” HMMPPH! It was unseemingly.  I don’t know why it bothers me so badly . Why do I want so much for the world to be a positive place?  Sometimes I swear it is a losing battle, and I wonder if people have made it their own personal mission to dampen as many people’s moods as possible while out and about on their daily jaunt. Well, I hereby declare that I REFUSE TO LOSE! THAT’S RIGHT, YOU HEARD IT HERE  FIRST! I am making it my own personal mission to get a smile from each person I pass. You will not dampen my mood. You will not rain on my parade, and you will not squash my happiness. So, if you take offense at my smile, I feel genuinely sorry for you. I hate that you are having a bad day, and I hate that things are not working out well for you. But I am going to smile just the same. That is my philosophy for today, my philosophy for tomorrow and for all the tomorrows from now on! So hopefully I am leaving you with a little bit of my smile for today, and maybe you can carry it with you for the rest of today !