Okay, big breath before this post. I always say that when I know in my brain that the things I am about to say are liable to offend someone somewhere in the cyberverse. But I have never shied away from telling how I really feel, (just ask those of my family or my true friends 🙂 It’s not really a bone to pick , or a soap box issue , it’s just something I want to bring up. See, I run a lupus page on FaceBook. I will have been running it for a year in November. Yay , me , right. Well, I guess. I mean , I’m not tooting my own horn , like Johan on that ridiculous coffee commercial. But I follow a lot of other lupus pages as well and have made a lot of friends from all over the world and it’s great fun. These are all positives. But I want to say something else too. For those who read my page, they see that I post positive and funny pictures . My goal is to get people to laugh and maybe forget for one minute that lupus is part of their life ALWAYS. But let me back up a minute, Don’t be fooled. Don’t mistake what you see for what is REALLY happening in my life, okay? I am 34 soon to be 35. I’ve had lupus for what they think is nearly 20 years diagnosed for almost 16. It attacked my heart causing congestive heart failure. I only have 30% function of it. It attacked my joints where every morning it’s agony to roll out of bed. It’s attacked my nervous system and brain causing something called dysautonomia where your nervous controls are fried , and you have no control over your heart rate or brain activity , so that without medication my resting heart rate might be 155, and I could have a seizure or some other event. I suffer from fatigue so severe that walking from the sofa to the bathroom can cause me to feel like passing out. I can’t drive, cook, clean or shop. Am I telling you this because I want a pity party ? Do I want you to come crawling out of the wood work with comments saying “You brave soul!” NO!! The exact opposite. I didn’t DO anything to deserve this. I got a lousy genetic deck of cards. But it ISN’t ANYone’s fault. And I refuse to give into pity! People have accused me of being in denial, “You should be angry!” Why? At who? It’s life. People suffer horrible things everyday. Why should I say , “Why me?” Shouldn’t the question be, “Why NOT me?” AM I EXEMPT somehow from human suffering? And tell me something else , Does being angry help? Does taking my emotions out on those who care about me, the doctors, hospital personnel or even complete strangers on the street, help me in any way? Will it help cure my lupus? Will it bring a spark of joy anywhere in this already VERY dark world? No,I’m not being a PollyAnna , and I have days where I cry my eyes out too. But , it doesn’t consume me. On the days it seems too much , I just remind myself, it came to pass, it didn’t come to stay, and take it one second, not even one minute at a time. I SMILE. Ask about someone elses’ problems, you might be surprised and humbled, and find out , yours might not seem so bad after all.
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
It’s a beautiful day outside my window today! I am SO, SO, SO grateful to be seeing the sun from my own window, and not that of the hospital. I was very lucky this particular hospital visit, too, because every single person I came in contact with was nice. Seriously! They were all enjoying their jobs, and happy to be at work helping people. Let me tell ya, that’s not always the case. I have an idea. I think hospitals should use the same criteria for hiring that customer service rep companies do. Such as,” Are you a people person?” , “Do you enjoy working with the public?” , “Are you interested in making some one else’s day better while they are here?” GREAT! This job is for you!! But I HAVE had hospital experiences where I do believe I have never seen so many grouchy people in my life! Everywhere I went there people were angry, aggravated, annoyed, alarmed or something. Now, granted, I know these are tough times. Times are tight, and money’s even tighter. It’s not fun to HAVE to work. Long hours, and low pay suck. And I ‘m sure that nursing must be a VERY difficult and emotionally trying job. But, I am beginning to wonder if people have forgotten where we live. I mean, it’s still America, right? Land of the free, home of the brave , and all that that implies? Sure, we’re having tough times, but we’ve still got more freedoms than just about any other place I know of. You can get up in the morning and go to work, or not. You can buy macaroni, or filet mignon, if you wanna, (and can afford it!). You can wear a striped shirt, some dotted pants, and a pink bow in your purple hair. You might get some looks, but no one will tell you , you can’t do that.(Well, I mean your mother might, but it isn’t illegal.) You can drive your car, go home to your house, of whatever size , and pretty much feel safe. These are all good things right? And I know everyone is entitled to have a bad day. But , you are not entitled to take your bad day out on someone else. Especially when that person is the one IN the hospital bed. I mean, compared to that , your life’s lookin’ pretty good , don’t ya think? So, I swear the next time I get admitted to the ER or the hospital and smile at someone, and they snarl at me……I may just have to get angry, aggravated, annoyed, alarmed or something!
Seriously…..life is good …..so SMILE! it freaks people out!~ Ruby Jeanette
Well, I just arrived home from my most recent “luxury hotel stay” (aka. hospital stay. Hey, if the price fits…..) I guess I should start from the beginning, or at least give you the general idea. I have lupus. I have been diagnosed with it since I was 19. I’m 33. So, I’ve had my share of hospital, ER , and doctor visits. It becomes a regular part of your life, whether you want it to, or not. Lupus of any kind , is not fun. It turns your life into the worst kind of rollercoaster of physical , emotional, and spiritual proportions. And not only a roller coaster , but a roller coaster ride for a terribly motion sick person, who’s afraid of heights and fast moving vehicles.
Lupus can come in all kinds of forms. It can affect you anywhere in your body at any time. I have a particularly tricky kind, called systemic lupus erythemotous. With organ involvement. Mine particulary seems to have taken a shine to my heart, which is wear the trouble started this weekend.
I had my gallbladder taken out about a month ago, (completely un-related to lupus) , THEN I got the stomach flu, and THEN I got dehydrated. Of course, I was also exhausted , ( wonder why? 😉 ) and apparently your heart doesn’t operate at it’s best under those conditions. And if you already have a weakened heart, well…..fill in the blanks. So Saturday after another round of heaving my dinner up, I experienced the WORST chest pain I have ever felt. You know it’s bad when the EMS guys say rate your pain on a scale of 1-10 and you just know you would kick the guy if you could find the strength. We’re talking 18 wheeler rollin’ over ya’, ride to the top of the world G- force sized pain. And the vertigo and nausea?!? Fuhgeddaboutit. Like eating 2 dozen donuts, a whole bag of pink cotton candy, drinking a blue slushie and then deciding to go on the tilt- a – whirl. So, off for the ambulance ride, I went , to the local hospital, 10 miles away, so they can be sure I can make the 60 mile ambulance ride to the “big” hospital.
Well, after a day and a half of enjoying the hospital’s hospitality , (and thinking to myself multiple times, “How MUCH blood did you say you needed?!?”) 2 CT scans, 6 X rays, 2 Gamma scans ( different from an X ray, not sure how) , 1 chemically induced stress test, 2 stomach injections, one upper glute ( rear- end for us unsophisticated types) injection, 6 blood draws, 2 attempted IV tries , 1 successful, 6 doctors, a whole slew of nurses, techs, and people whose titles I may never know, I am home.
It was decided it all amounted to lupus. See , lupus can give you a bad time when you’re feeling comparatively healthy. But , when your immune system gets down from other factors, it just takes the reins and runs with it. And pretty much all you can do is just hang on, medicate yourself as the doctors order , and wait for it play out.
So anywho, despite all that, I think I ‘m on the mend, or getting there anyway. Well, at least I left with my sense of humor intact because when the doctors recommended that I take a little better care of myself, and maybe try to rest more, and do less, I just kind of looked at them cross-eyed, and said , “Uh, you DO know I have children, right?”