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
Well, It is the 11th day of March and my first day to post in 2013! It seems like forever and a day since I’ve posted! This has been a very rough year for me so far. Lupus has been kicking my tuckus. How are you all? Is the new year going to suit you? How in the world have you all been?!? I feel like I have dropped off the face of the earth! It’s good to be back in the blogosphere as they say! I hope you are all doing well, or as well as you can.
My health had been great ! I suppose that must be one of THE most frustrating things about lupus EVER. To be fine, and then BAM! You just wake up and have to start all over again from scratch. I just had a three year remission period , with NO medications needed. It was fab. I was able to really get out of the house , I was even able to go with my kiddos to activities, and lost a ton of weight. Yay, me!
But , starting late summer 2012 , I really started to go downhill again. I had to go back on chemotherapy, and steroids. These were the drugs that sent me into remission before so we had no reason to think that it wouldn’t work this time. Well, surprise. Chemotherapy not only decided to make me seriously sick ( crazy nausea, anyone?) , but it didn’t help the lupus any either. My rheumatologist told me about this fairly new treatment called Benlysta, and thought that I might be a very good candidate for it.
So after much paper work and waiting , I got approved and had my first infusion today. Tomorrow, I’m going to post about the whole process, and how it all went, but for today, I’m just checking in with you all, and saying hello , my old friends, glad to be back “home”. Much love, and as always, ((HUGS)) Ruby
When I was four~
It’s not fair. I don’t belong in this dress.
Stupid pink bonnet. Choking me with it’s girliness.
And a purse?
I can’t put my baseball and dead bugs in this.
I need my rolled-up Levi’s and Chucks.
I want so badly to pull away from this picture,
because it isn’t showing me.
I don’t want to look at it now, five years , or even ten years from now,
because all I see now , and will see later, is a stranger standing there.
I see my best friend Jack standing across the street.
He’s laughing at me, and doing his best imitation of a ballerina,
just to mock me.
This pink coat won’t keep me from blacking his eye.
It’s not fair. I don’t belong in this dress.
This post was done in response to a writing challenge . The challenge was to come up with something based on this picture. So this was my interpretation of what was going on . Want to join in? Here’s the link about how to do it. This was fun!