About Me~, Writing

Fortune Favors the Prepared~

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In searching for inspiration for writing this series on lupus awareness month, I’ve thought back to many of the things that I have experienced, and many of the things I have learned that have helped me cope.  I suppose that is really one of the things that I have to be most grateful for, lupus has taught me more in my 36 short years , than some people would ever learn in a lifetime!  

  Today’s tip has to do with hospital trips.  As lupies, we unfortunately have more than our share of doctor and hospital visits. Since I was young I’ve been hospitalized every year , at least once. Most years , many more times. A lot of the time it would be a rush job, and we would leave the house  snatching this, socks, toothbrushes, extra underwear,  items flying through the air in hopes that they would reach the suitcase as we ran for the van , and out the door.  Finally , after lots of visits where we ended up with no pajamas, or shampoo, we decided we’d start packing me a “just-in-case-bag” . You know , (Just in case I have to hurry to the hospital!) .   😀  

  Now everyone’s just-in-case bag will be different, depending on what YOU need when you go, but here is a typical list of the things I pack:

Things to Pack Just in Case 

1. One extra set of clothes for each day you plan to be gone , five is good ( if you’re like me , you DON’T want to live in the heinie -showing hospital gowns)

2. In gallon zip-loc bags ,roll  your underclothes and socks for each day( I like fuzzy character socks!)

3. A toiletries bag with your favorite shampoo and bar soap ( cause let’s face it, hospital brand soaps SUUUUUCK!)

4.  One word  – DEODORANT – ‘ NUFF SAID.

5.  A really, really, really, REALLY comfortable nightgown.  This is in addition to the clothes outlined in line 1. 

THIS is for sleeping.  The I’ve had-thirty-different-kinds-of-blood-tests-sleeping.  

6.  Breath mints, gum, jolly ranchers, blow-pops, ANYTHING to keep your mouth from feeling like the Sahara. 

7. HAIR STUFF–  Yes, I said, “stuff”.  A hair brush, gel, a comb, bobby pins, an elastic band, hairspray, whatever you need to tame your hair into some semblance of normal and NOT the Creature from the Black Lagoon, trust me, you will be GLAD you did this.

8. Chap-Stick-  or Blistex or Carmex or whatever you use to slather on your lips, heed me when I say……..”BRIIIIIIIIIIIIINNNNNNG IIIIIIIT”   your lips will be eternally grateful, I promise. 

9.  Art paper,  pencils   or   a   book to read,   and yeeeees, I know, people have tablets now  (don’t get ahead of me!) for that kind of thing,  but there is just something soothing about the feel of REAL paper!

and last but not least……

10.  Your tablet.   For messaging, checking your e mail,  instant messaging,  and yes even keeping thousands of books on your Kindle app, it’s hard to beat Amazon.  

So I hopefully this will give you some ideas to pack up your bag , BEFORE your next rush-job hospital visit! Love you guys!

  So there ya’ go, my go – to list   of    must-have   things  for hospital visits .   I hope you guys find it helpful.  But hopefully , NOT  in the near future, ya’ know…………………lol       😀         

About Me~, Poetry

The BEAST of PAIN and TEARS~

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My life has been a funny thing ,
it started out as just bout me,
I guess I thought that’s the way it should be.
Then something crept in on subtle wings,
on clawed feet ,
into my being.
It had a name ,
We could not speak,
this horrid beast.
And suddenly,
I knew.
My life had not meant to be,
just about me,
the pain so deep,
the tears that steeped.
For all around the world there sleeped,
hundreds, thousands, more.
This monster tore.
Its jagged teeth .
Bodies cleaned,
restless,mean.
My words , you see,
I use to cleave and daily free,
MY thoughts from
lupus’ monstrous’ hands.
“NOT ALONE!!”,said I.
“NOT ALONE!!”.
“FOREVER TOGETHER!!”, said we.

Poetry

Emma~

I couldn’t even hold your hand
or find the words to say.
The pain that I saw in your eyes,
just wouldn’t go away.
The doctors first tried one thing
and then they tried another,
Nothing really seemed to help,
you even seemed to smother.
Underneath the pain,
as if a frozen glaze,
what they said would last just now,
has turned into days.
I wish that I could help you ,
that I had the magic cure,
to take away the pain you feel,
that it would be no more.
I pray for you,
sweet little one,
that this nightmare soon will end.
You’ll be back to your happy self,
my magic cheerful friend.

About Me~, Poetry

REMAIN~

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Everyday , I wake
and wish that somehow my life had changed.
This is not the ONE I ORDERED,
somehow things got rearranged!
Where do they keep the paperwork?
Are there forms I need to fill?
Take back this life of pain! Despair!
Make me normal still!
Somehow, I feel quite cheated!
As if somewhere else on earth,
someone has the life I requested,
switched maliciously at birth.
I know the truth cannot be altered,
it leaves its indelible stain,
lupus TRIES to take my body,
but still I here REMAIN.

About Me~, Uncategorized

No Make-up Necessary~

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(Today is Restful Wednesday! Or Nap Day. 🙂 No dressing up, or application of make-up required. I have decided that on Wednesdays I am going to have a day just to rest. I will do my blog posting and FaceBook early if possible, and not worry about anything but rest, at least for Wednesdays. Because,I have decided that my health is like that L’Oreal commercial, it’s worth it! If you are tired, this is a public event, so get your favorite jammies and join in. Find your special spot on the sofa, and let’s just take care of ourselves for one day! )

Fatigue. It is probably THE hardest symptom of lupus to explain to people. Yes, I know , everyone gets tired. We’ve all had those days where we felt like we just couldn’t roll out of bed. And sure, we’ve all had those days where we COULD roll out of bed, and just didn’t WANT to…….:) But what my non-lupie (those without lupus) friends don’t “get” is that the fatigue of this disease is SO much more severe than anything they can imagine. I know that might sound harsh, and you can say I’m exaggerating if you want, or being dramatic, but it’s the truth. There’s nothing like it. The only way I know how to explain it to those who care enough to ask, is to say , Imagine the worst case of flu you ever had. Remember how tired having the flu makes you feel. How just making it from the bed to the sofa in the living room is so exhausting you think you might have to call the ambulance. Got that flu feeling/memory in your mind? Alright. Now. Imagine that it NEVER goes away. That every day when you wake up this is the first feeling to hit your body. That no matter how much you slept the night before , you are still NOT rested when you get up. But stuff still has to be done doesn’t it? Housework, taking the kids to their activities, being a functioning human being….etc…. When you have the flu , it just lasts maybe a week tops, and people understand. They’re sympathetic. “Oh, you poor baby. The flu is so awful!” But , when this becomes your life, people are a lot less understanding, let me tell you. They really start to get that whole, “Well, we’re ALL tired!” attitude with you. “Suck it up.” I’m not complaining, really. I know there are people who are never going to understand. These folks are never going to “get” it , so to speak. But, I just wanted to write, and let everyone know. The next time someone with lupus says , “I am exhausted!” or they make their joke / not a joke about needing a day just for naps, you might picture a flu day in your mind, and understand maybe a little bit better…. There’s also an awesome story in the lupus community called “The Spoon Theory” that I sometimes give people to read when they really WANT to understand…….it explains it so well, you can read it here……..http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

About Me~

Checkups~

Well, I am 6 days out from having my gallbladder taken out. I had it out last Friday in the a.m. And got to go home the same day.  I guess for an update , I’m feeling okay.  Not spectacular, but okay.  I still have my staples which I am hoping to get removed at my checkup today.  I am still sore on the right hand side, and coughing or sneezing is still pretty rough.  I’ve been up every day and walked some, so I haven’t just been flat on my back, even though the first couple of days, let me tell ya, that’ s all I really wanted to do.  I am still really weak, because I wasn’t able to eat for about a month before having it taken out, and my appetite is just now picking back up again.  I still am thinking about the sofa being my friend! I am just really tired , still, and hope my energy soon picks up with my appetite.  So, all in all, I guess being only 6 days out from surgery, I really can’t complain!  Hope to feel up to being out and seeing people soon!  Wish me luck at my checkup!