About Me~, art, inspirational, Uncategorized, world affairs, Writing

How Bizarre~

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The beautiful is always bizarre.  ~ Baudelaire 19657041_1349803748431210_6828812241786549423_n

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. “

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~, art, Poetry, Uncategorized, Writing

Installation ~

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We think we cover it so well,

Layers and layers ,

to conceal  the imperfections,

those things we see as flaws.

Always afraid , they’ll be stripped away

by life’s unfeeling jaws.

But then you collide,

with another soul.

Whose vision seems almost  preternatural .

How did they come so close?

And then you realize,

their layers , are your layers.

Separate coats of gloss ,

but from the same brush.

The graffiti the same.

And suddenly , you are seen.

through all the misted layers of choke-filled smog  that smother the world.

You are heard,

in all the noise that blankets the city,

and then in that cacophony ; of brick and steel ,

taxis  and hearts rushing ,

the art coalesces.

Ruby Jeanette Woods 

Street Art by Eduardo #Kobra 

 

 

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

The Best Things in Life are Free~

Hey howdy hey, everybuddy ! I hope today finds you doing the best you can , with what you have ,where you are. I’m perched on my ever present sofa, under so many covers that I look like “Burritos Gone Wild” .  🙂 My chest has decided to pull its lovely asthmatic routine, which of course the damp weather doesn’t help. But anywho, what’s a gal to do, but suck down albuterol, pop a prednisone, and chug some cough syrup. Story of our lives, eh? But shall we get to today’s thought?  🙂

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

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

So that brings us to “H” . 

 

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Now bear with me, I have to kind of give you a little bit of background on this so it makes sense. I am a very affectionate person. I like people. ALL  kinds of people . The singularly different ones, the “something’s just a little odd ones” , the eccentrics, the painters, the artists the poets. The down trodden, the homeless, the not quite so clean ones.  I like being around them, talking to them, hearing their stories , and just being in contact with them. I also freely admit, “I am a “hugger”. I like  hugs. Hugs are good for you; and in turn , they are good for the person you are hugging. And they’re FREE!!  I mean, there’s research to back it up, and everything!! Here is a great article I found that explains it really well.

http://health.usnews.com/health-news/health-wellness/articles/2016-02-03/the-health-benefits-of-hugging

Here was one of my favorite sections of the article , that shows just how far a good hug can go.

There’s also some evidence that oxytocin can improve immune function and pain tolerance. A 2010 study from Ohio State University found that couples with more positive communication behaviors have higher levels of oxytocin and they heal faster from wounds. More recently, a 2015 study from King’s College in London found that oxytocin has analgesic effects, leading to a reduction in perceived pain intensity and lower pain ratings when participants were subjected to brief radiant heat pulses that were generated by an infrared laser.

So not only does hugging improve immune function, and pain tolerance, it JUST FEELS GOOD!  It’s a win \win , right?

So hug someone you love, hug your friends, your family, your children; I mean , I’ve been known to hug complete strangers who looked like they needed one. ( Of course, my hubs thinks I might be a little odd, but hey  😉

The world is a crazy, scary, uncertain place. People are dealing with all kinds of difficulties, struggles, and mental anguish. I would hate to think I could have helped someone , in a small way, but didn’t , because I missed out on a hug.

So rock on ! Huggers of the world! And if you see me, don’t be afraid to ask me for one .

Cause I love you! With all my ❤ and 🙂 and of course ((HUGS))!! 🙂 🙂   ~ Ruby J.

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

Do What you Can, With What you Have

AAAAAAARRRRRGH! I missed a day!! UGH. I was on a roll , too. HEH. Well, what can you do. Sometimes your body just demands that you “lay low”, as my Daddy says. Anywho. I guess that makes today the letter, “E” right? I feel like we need a Muppet saying, “This was brought to you by…………”  🙂

 

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So today’s thought is , “Exercise”. Now before you get in a bunch, and say, “I’m disabled! I can’t exercise!” Well obviously I don’t mean that you will do the same things that “normal” people will do. My body is totally not in the shape it used to be. Before I got ill, I was in great shape. I worked two jobs, and was physically in the best shape of my life. Now I am lucky if I can walk down the hall , without being winded. But I DO walk down the hall. When I had the stroke, I was wheelchair dependent. That was very difficult for me. And I swore that if I ever regained use of my legs, I would do all I could to keep it that way. So of course I’m not out running marathons! But I DO stretches, yoga , and when the weather is good, I walk. Maybe I can only walk a hundred feet. Or to the end of the driveway. Some days my body is so exhausted that all I can do is lifts and stretches while I’m laying down. But I make my body do something. And be proud of what you CAN do! Don’t compare yourself to someone else. Don’t feel bad, that you are “only” stretching , or “only” walking a hundred feet. Any effort is better than nothing. We are strong, capable people, who are absolutely doing the best we can , with what we have. And that’s all ANYONE can expect. I am so proud when I see my fellow lupies posting pictures of their everyday triumphs. You guys rock, and my world is a better place for knowing you! We make every little thing count, and I think other people could definitely learn from us. Oh and if I haven’t said it today  , thinking of you with ❤ and 🙂 and always ((HUGS))

One step at a time! ~ Ruby J.

About Me~, Uncategorized, Writing

Primum Non Nocere

 

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“An apple a day will keep ANYONE away, if thrown hard enough. ”

Doctors. Love them or loathe them, most people will have to see a few of them over the course of their lifetime. If you are “normal”, you will probably only ever see a General Practice doctor. If you’re female, perhaps an OB\GYN for checkups and pregnancy. Maybe an ENT (ear , nose and throat specialist) , and of course a DENTIST to maintain your dental\gum health.  If you are blessed with good health, these are probably all the medical profession you will ever be acquainted with.  (And that’s great!)

If you had told me , when I was very small, that I would see more doctors in a year, than most people see in their entire life, I would have laughed you off. I just couldn’t see HOW I would ever need that much attention from the medical community.  Boy, was I wrong.

With many symptoms, come many doctors! I have a cardiologist, a rheumatologist, a neurologist, an allergist, and of course, a general practice doctor. It has taken many years for me to get the doctors I have needed for my medical team. It’s so important to remember that, “Just because they went to medical school, does NOT make them a great doctor. ” . Or even a GOOD  one. So here are  my tips for getting the best medical team for you.

  1. Before you make the appointment; RESEARCH! Research, research!  Ask your friends and family if they know the doctor. Get their opinions.  Google will be a huge asset in this department as well. Look up their clinic, and their track record.  What are their wait -times like? If they are located far away, do they offer services and benefits that are worth the stress of a drive , for you?
  2.  In the weeks before your appointment; Make a symptoms diary. Keep track of your sleep and any medications you have taken, as well. This can help your doctor see the severity of your condition over a long period of time.
  3. During the week ahead of your scheduled date; Make a list of all the questions you would like to ask, that way you will not be sidetracked by the busyness of the appointment.
  4. At the appointment; Bring your list, and ask your questions. If the doctor seems reluctant to give you answers, or gives you the “run-around” , speak up.

Finally, if you don’t get the answers you need, if you feel the doctor’s “bedside” manner is not going to mesh well with yours, or if they otherwise make you uncomfortable , then find a new doctor! After all, THEY work for YOU, not the other way around, and you only get one life. You deserve the best, and so do the people who care about you.

There is absolutely no need to add to  the stress of your already stressed life. Doctors should  be your advocate , following their motto.

Primum non nocere

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With all my ❤ and 🙂 and as always ((HUGS)) ~ Ruby J.