Okay, I’ll just get right down to the brass tacks people. At the beginning of this month , I had kind of made a goal with myself and my page here that I would write every day about lupus, because this is lupus awareness month. But , let’s be perfectly honest here, I suck at daily goals. In large part , BECAUSE of lupus, and in large part because I JUST don’t WANT to write about lupus every day. I mean , seriously. LUPUS sucks huge quantities of big , hairy things. It bites. It blows. I want to write about fun things. Like roller coasters. Okay, so maybe not about roller coasters, I don’t particularly find those fun. But , KITTENS! Or orange sherbet , or ginormous glasses of ice cold coca cola consumed at mind blowing speed! YES! THOSE kinds of things! Not IV infusions , or toe -nail puking nausea, or rashes that make your skin fall off. Or being in the hospital for so long that you’ve moved your entire wardrobe there, and know ALL the nurses and doctors by name, and you’re only 22 years old. I want to write about traveling! To places with names like Zanzibar, and Montenegro, where they serve you things that you can’t pronounce, and maybe you don’t even want to. I want to write about things like kissing my husband on top of a mountain so high you have to sleep on top of it for the night before you can climb back down again. I don’t want to have to write about things like telling my sons , “No . There will be no more babies in Mommy’s belly. The lupus took those parts away.” And I was only 24. I don’t ever want to write again , ever again , about chemotherapy, to kill the lupus , which it does , VERY effectively , but also makes me so sick I wish I COULD die before it does. I would only write about the good things! The things like , my husband holding my hand in the hospital , while I was breathing so few breaths the nurses thought that I was going to go, but I still knew my family was there. I would write that, in spite of all that I have seen , felt and done, every single day of my 36 years has been worth it, I would write that the love I feel for my children surpasses any pain I have ever known, and I would write to those of you in the midst of this fight , that yes, lupus sucks large quantities of big, hairy things. It blows. It bites. But WE bite harder. And I will find and write the GOOD much more than the bad.
I don’t understand why.
Why you hurt me all the time,
and try to make me cry?
I know that I’m not perfect,
but I never claimed to be.
I only know one way to live,
And that’s just to be me.
I get that we’re polar opposites,
you’re the sun and sandy beach.
I’m winter cold and drifting,
the moon you cannot reach.
I’m sorry I can’t be the person,
that you need me to be,
I don’t know how to change it,
so I’m setting myself free.
I’m one thing and you’re another,
and I ‘m tired of playing games,
I ‘ll always be just who I am,
I’ll always be the same.
It hurts that you don’t want me,
but I have to let it go,
my heart can only take so much,
of this bruising in my soul.
So now you’re free to be the person,
that you want so much to be,
I’m just here in the shadows,
you don’t have to worry about me.
I’m going on with what I have,
and leaving you behind,
I hope you have much happiness,and peace to soothe your mind.
I’ll always have a prayer for you,
I know you’ll have the same,
I ‘ll keep the good times in my heart,
and won’t forget your name.
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
This is going to be a sensitive and controversial post. Let me say up front, I AM NOT writing this to offend anyone! I am not an in your face person, I am not a fanatic, and I support everyone’s right to their own opinion , no matter how different. Okay, with that being said, I posted what I thought was, a humorous story on FaceBook. It was about a scientist and God getting into a duel about creation , and who was better at it. God ends the conversation by saying the man must create his own dirt in order to start. It was meant to be funny. It was not meant to offend scientists. I do NOT have a personal vendetta against scientists. I do not wake up in the morning with the agenda of “How can I discredit scientists today?” I have always enjoyed the sciences and learning about the way the universe works. Nature, galaxies, even the smallest bug, it’s all fascinating. But, here’s the sitch. I’m a Christian. I believe in a literal 6- day , God created the world, and then He rested-type scenario. Why? ‘Cause the Bible says so. There ya’ go. But apparently, that makes me ignorant, narrow-minded, a fossil, biased towards scientists , and just generally an idiot. “Oh, but ALL the facts say that it couldn’t have happened the way the Bible says!” What facts? Can you get two scientific people to agree on a theory? They all have THEIR own ideas too! “Well, I think it happened this way!” “Oh, no, no, no. The evidence most assuredly points in the direction that I think!” , and that’s okay because it’s all “intellectual conversation” and they are “educated people”. But , you admit that you believe in the Bible and its version of Creation, and suddenly you’re a moron. Why is having a faith about something unexplainable so offensive? Why do they care? I mean , really , think about it. If I WANT to have an “irrational” belief , such as the ‘sky is green’, what am I hurting? So, I am not going to apologize for having faith in a BOOK that has helped me through a LOT more situations than “The Origin of the Species.” I’ll apologize for hurting your feelings , but NOT for how I think, or feel. It is still a free country. (For a while longer , anyway.)
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
I am a “hats” girl. Always have been. When I was little I was never seen without one of my two favorite hats, a beat up baseball cap that my Dad gave me, or my cowboy hat. I was a major tomboy, and even though I had long hair, I always wore it pulled back so that I could pull my ponytail through the back of the ballcap, or tuck it under my cowboy hat. I never really was much of an “appearances” kind of kid, or a girly-girl. I didn’t wear makeup, or carry a purse until I was well into my teens. It just didn’t seem important. I mean really? When you’re breaking and training horses, taking transmissions out of old trucks, and learning to weld, which handbag to carry is not really something you have to worry about. And who wants mascara running down their face when you’re swimming your horse upriver? And dresses? Fuhgeddaboutit. Those were reserved for church, and were immediately ripped off and tossed haphazardly when arriving home, while running full speed towards the barn. But, hats. That’s a different story. You really don’t think about needing one until you are outside. The sun, the rain, the wind, all those things are what hats are made for.
Now that I am grown with two children of my own, I still like to wear my hats. I like fedoras, newsboys , berets , anything that can be jaunty and masculine but feminine at the same time. I like to buy costume jewelry brooches and pins to wear on them. It kind of adds my own twist.
I look back now and realize that when I was growing up and wearing my two favorite toppers, that sometimes it wasn’t always about protection from the weather. Sometimes I think I used my headgear as protection from other things. I was very different from the girls my age, and caught a lot of teasing on account of it. So the hats became almost like an armor to wear to keep people from getting too close. There is something about a hat that kind of keeps others at a respectable distance. The brim on a hat can hide your eyes, and can make it easier to see what others are thinking , without them doing the same to you. I ‘m not really sure why I felt like I needed that force field of protection at that point in my life. I felt different , and you know when you are a tween or a teen that “different” is a very hard thing to be.
I don’t feel vulnerable like that anymore, so now I just wear hats that feel fun. Or whimsical. I don’t have to hide. I’ve grown into my uniqueness, and what people think doesn’t bother me anymore. It’s really okay to be different, and every body will not necessarily wear the same “hats” in personality, or in life!