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
Never regret. If it’s good, if it’s wonderful. If it’s bad. It’s experience. ~ Victoria Holt
Worrying is like rocking in a rocking chair. It gives you something to do, but doesn’t get you anywhere. ~ Grandpa Jones
I have lupus. I am 33 years old. I was diagnosed with this terrible disease at age 19. I had just given birth to my son whose heart was damaged BY my lupus. They told us he might not live. They said that IF he lived, he would be brain damaged, and never walk, talk , learn to read or be “normal”. They told me about 7 years ago, that very soon, my heart would be in complete heart failure, and that even if I took all my medicines, I would not live for very long.
I had someone ask me if it made me angry. And I had to think, “Was I angry?” No. Not really. Sad, yes. Disappointed. Life definitely was NOT turning out like I had planned. Frustrated. Confused. But, not really angry. I know people think I’m in denial about it. But , really what would anger accomplish? It is what it is. It is no one’s fault. I told the doctor “I just got dealt a lousy genetic hand of cards.” I have good days and bad days. So do people who are “normal”. It’s life in this crazy, mixed-up, wonderfully wild world. Being angry is not a very productive emotion for someone with lupus. It actually makes you feel worse physically. Stress is not my friend! So, if I get caught up on that treadmill of “feeling sorry for myself”, I try to remember there are people who are actually in worse shape than me. It’s all experience and worrying is not going to get me anywhere.
Oh, and by the way. My son is 13. He just passed the 7th grade test. He has a pacemaker, but he walks , talks, reads, and is just about as “normal” as ANY teenage boy. (Heh, heh!) I am NOT in complete heart failure. I DO take my medicines, and yes, the days are challenging. But , I refuse to give up. I refuse to regret even a single minute of a single day. I’m living for the experience, and hope you will too!