About Me~, Poetry

REMAIN~

editedfirerose

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~, Poetry

Broken~

th (1)

The words you said,
and blew my way, like arrows on the wind.
Tore right through my open arms,
for I THOUGHT you were my friend.
I had in mind to reach for you,
and share some special thought,
you passed right by , your only aim,
to take the open shot.
We’d been friends, but now somehow,
you say I don’t belong,
somehow you’re bigger, better, MORE,
and I was just a pawn.
You’ve gathered up your little group,
and circled round to feed,
I was only scrap for you,
now nothing that you need.
Perhaps you think that all are fooled,
and don’t see what I have seen,
but you have cut me deeply,
and God has seen me bleed.
So keep up your game of “I’m so much better”,
and direct your little play,
there’ll come a time when all’s revealed,
and always a price to pay.

About Me~

Puttin’ On My FIghtin’ Panties~

purplefairy12

Wow. What a whack a doodle weekend. Well actually two whackadoodle weekends in a row. I have never been so sick of hospitals , nurses ,and doctors in my whole life. The funny thing is the two weekends could not have been more varied. Last weekend 4th floor of the hospital, I got nice nurses, wonderful doctors, awesome treatment, everything explained in execellent fashion , all gold stars all around, diagnosis of extreme dehydration , complete weakness , body gone down to the bare nubs with a viral infection. So last weekend, I got antibiotics , tons of fluids, and treated very well with much rest and respect. This weekend, I get an Emergency call at my home at 7 pm saying my labs were seriously out of order, my INR clotting factor needing to be a 2 and was a 19, so basically I could bump my leg and bleed to death. GET TO THE HOSPITAL TO BE ADMITTED ASAP> 2nd floor nurses, not so awesome, couldn’t get their junk together , total spazzes, tourniqetted up my arm , but forgot that you need vacutubes BEFORE you draw the blood and just left me wrenched up that way, while she went to get her forgotten tools. In and out , up and down all friggin night, no sleep , Then the doctor decides he doesn’t have to come in to speak with me, and can just order his lackeys to basically come in and run me over roughshod with a bunch of tests that I had already had once , that he wanted repeated for no good reason. But the doctor didn’t want to plan a plan for my care just go all willy nilly. Well I lost it. For one thing they all talked OVER me or AT me instead of TO me, as if I were a mindless vegetable in the bed. I guess my righteous lupus indignation rose up and I proceeded to have a lupus hissy. I said , You do not talk to me like I am stupid. I am right here, and if you want to do something you talk to ME. These tests were done once, why are we repeating them? And these nurses, all night, in and out, couldn’t get their gear together, I got no sleep. For NO reason. THEY ARE supposed to KNOW their jobs. So until people can get their crap together , and get me a coherent plan , don’t come talk to me. They all looked at me like I had grown a third head, but seriously! Lupus has fried my body, NOT my brain! I am sick not stupid. And when your doctor comes in and just doesnt’ really inspire confidence that he knows what is going on with your VERY complicated situation, you don’t just sit there and think , “Hmmmm, should I put my life in this guys hands or what?” “Let me think, hmmmmmm?” I THINK not!” Well, today the nurse must have told him what I said because he was totally different this morning, very deferential. And I HATE being a bully, but DAGNABBIT, this is their JOB! People’s lives hang in the balance. This isn’t checkers, folks. Get it right the first time please. Or I promise I WILL put on my LUPUS fighting panties and go at it with you . It ain’t purty , but it gets the job done. I’m thinking of giving lupie assertiveness classes , seems like there may be call for them, lol Love you all ❤ 🙂 and as always (hugs) ~ Ruby Jeanette

About Me~, Uncategorized

A Whirl-wind of Thoughts~

swingergirl

Wow.This has been a crazy whirlwhind couple of months for me. Between new diagnoses of diseases , to new medications, new heart treatments, and some other really erratic things to deal with , it’s been kind of out of control. And I got to thinking about some things, that I thought would really help me, and I just kind of wondered if maybe it would help some of my other fellow lupies too. I know sometimes we are really grateful to have people to help us at all, so we don’t say things , lest we sound really ungrateful, like ” How DARE you fold and PUT AWAY my clothes!!” when that’s not what we mean at all!! 🙂 But, I AM KIND OF known as the girl with NO FILTER for her mouth , so I’m gonna give this a go 😉
I’ve been getting a lot of questions from my friends on my lupus page about family and family drama. Things like “How do you deal?” , and “What do you say to keep people from getting upset?”, “Well, I don’t know that I’m the best at it, but I’ll give it a go. Okay? Okay.

THINGS FOR THE FAMILY~ Strangers NOT to say:

1. How are you feeling today? ~ now honestly , I know that to the non-chronically ill, this seems like the first thing most people would want to hear right? But , seriously. We hear this ALL day EVERY day from EVERY FRICKIN PERSON EVERY-WHERE. The cash register lady “How are you feeling?” The neighbor, “How are you feeling today?” But, after a while, all we really want to hear is “Hello! It’s good to see you! (Undertone meaning, I’ll talk about my illness if I feel up to it today , thanks.)

2. When do you go to the doctor next? or What do the doctors say? ~ Well, the doctors say ALL kinds of things. I’ve got 4 at last count. So which doctor’s current opinion do you want? Do you want me to be BRUTALLY honest? DO you REALLY want to know what the doctors say? A better thing to say is ” I hope your next doctor’s visit goes well.”

3. Your face/hands/arms/legs etc. look really red , swollen and/or rashy. Is that a lupus thing. NAh. I just normally look like giant bloated crimson beached whale. A better thing to say in THIS particular situation is NOTHING , PEOPLE, ok? NOTHING.

4. When you see your friend and wonder what would be the best thing you could do for them in their painful situation? ASK. Do they WANT a phone call? ASK. Don’t be offended if they dont’, maybe they are too tired to even hold a conversation with you, it’s not personal. Do they WANT help with the house ? ASK? Don’t be offended if they don’t. The thing to remember about offering help is make sure that the reason you are asking is that the outcome is really benefitting the “SICK” person , and NOT yourself. Don’t ask to do something because later on it looks good on you and you can brag later about what a good deed YOU did.

5. The easiest thing you can do for a sick person that maybe you haven’t thought of , is DON’T HOVER!!, yes we are fragile, yes a lot of us are dying and need special treatmeant, but we WANT our families and friends to treat us as normally as possilbe. So please , please try to remember, that although, we are lupies and are sick we are just normal regular people too. We won’t break if you leave
us alone for five minutes, and sometimes we just need our own personal space to be the weird, wacky,and wonky people we are!

With ❤ 🙂 and as always (hugs)