About Me~

Side Effects~

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Be very careful of reading health books. You may die of a misprint. ~ Mark Twain

Ha. I love the wisdom of Mr. Twain. And I have found so many of his quotes to ring true. Possibly none truer than this one. It also applies to listening to the health advice of others. Trust me, when you have had a chronic disease for 15 years , you get used to hearing all kinds of ideas from all kinds of people. For some reason , even complete strangers feel entitled to tell you what you should be doing with your body . “Oh, you have lupus?” “You need to drink vinegar mixed with the toenails of a Brazilian tree frog while standing in the shower on the third Thursday of each month!” or, “My cousin’s aunt’s daughter’s nephew’s boss has that. She has this great doctor who prescribed this drug you can get, and it cured her!” And on and on it goes. You wouldn’t believe the things I’ve had people tell me. I used to get really upset, because when people say things like that, they make you feel like you aren’t “trying” to get well, or that you are “enjoying” being sick. Sometimes it made me feel angry , because it made me feel stupid, as in “Oh, ask my doctor about new medicines?!?! I would NEVER have thought of THAT on my OWN! But after 15 years, you begin to realize that people really just feel helpless. Especially your family , and those close to you, who want so badly for you to be okay. They see you in this terrible pain, and don’t know how to help you. They see that your body is turning against itself, and turn to whatever seems like a quick fix. And it would be wonderful if it really worked that way, but unfortunately it doesn ‘t. As this point in time, there aren’t any “quick fixes” or really even any “slow fixes” for lupus. Basically , we’ve got Band-aids. We use the Band-aids to keep us patched up and going as best we can. Of course sometimes all I want is to use the Band-aids to cover up people’s mouths when they are offering their “help”, you know. So, if you have lupus like me, and are getting unwanted advice, try not to take it too seriously. But also know that just because you love these people doesn’t mean you have to apply their advice or suggestions! You can certainly take Mr. Twain’s advice. So you don’t “die of a misprint”.

About Me~, Poetry

Arrival and Inspiration~

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This is a poem I wrote today after seeing some birds outside my window. I got to thinking about how optimistic they are in the face of how the weather still is outside today. It is beautiful here today, but still chillingly cold. The sun was out, but the wind was biting. The birds , however just looked so very happy to be out in the gorgeous redbud tree. The buds of the tree themselves were totally unfazed. Just brightly purple ,contrasted nicely with the red of the birds, who seemed so contented to just see spring finally arriving after the winter of snow and ice, that it was hard to fault their joy. It was beautiful to watch them enjoy the sunshine, and eating the seeds that they were finding. I was almost envious of their joy. It was very inspiring. Just a little something I wanted to share with you . Something that caught my attention today. Hope this finds you feeling creative , or inspired by something, that maybe you haven’t really noticed before in your life, or that maybe you have, but noticed it in a new way. ~ Ruby Jeanette

About Me~, Uncategorized

My Obsessions~

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We all have obsessions. People will try to tell you that they don't . Oh, no, I don't have any naughty obsessions. They watch those hoarding shows , and think to themselves, "Well, I am NOT like that." , and somewhere in the secret corners of their minds they have something they are hoarding up. Maybe it's not butter container lids, or knick knacks from the dollar store. But we all have something. With me it's books. I love them. The smell. The feel. The paper. The covers. Stacks of them. Piles of them. On the sofa, under the bed. In the bathroom, in the kitchen. In the car, in my purses. I have them everywhere. I buy them at the thrift store, the big box store, garage sales, people give them to me, like old friends long lost , they come to me with their old scuffed shoes , and I welcome them home. I never have to feel alone when I am with them. I've met the most troubled, intelligent, quirky, dark, and fun people there. I've been next door, and to the other side of the farthest , farthest galaxy, just by turning the page. And really , what better obsession is there , than that?

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About Me~, Uncategorized

Shoot First~ Ask Questions After~

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Ohhhhh, I could get in serious deep water with this Plinky prompt. The prompt today is , Write about a time you acted first and thought later, giving into your impulses. Heh. WHICH time?!? I am like this all the time. Just ask anyone. If you've known me for more than five minutes, or read more than one or two of my blog posts, you've probably gotten the handle on the fact that , while I MEAN well, sometimes my mouth and my brain do NOT necessarily cooperate as a cohesive team. In other words, I 'm a lot of fun, but I suffer from foot -in – the- mouth- disease. A lot. My husband just looks at me sometimes and shakes his head. He has at times looked at me and said, " I can't believe you actually said / did that. I swear, I'm an adult. I'm 34 , and I've managed to never do anything illegal, immoral, or really, really stupid. (Honest!) I just don't have that filter between my brain and my mouth. I know my parents must have thought when I was growing up , Dear Lord , help us, what are we going to DO with her?!? ( My Dad's bald now, by the way, and my husband DIDN'T have gray hair, but now does…..) I dunno, I guess, maybe I'll mellow with age? Or maybe I'll be THAT lady. You know who I mean, that 80 year old lady that they say, "Watch her, you never know what she's going to say!"

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About Me~

Empty~

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You know , it’s coming round spring again. Or it’s trying to. The weather here in Arkansas can never seem to make up its mind this time of year. You know how it goes. Thirty degrees one day and seventy the next. Cold and grey, gloomy and wet. The wind seems to suck up any hope of anything new and fresh that dares to stick its head above ground. Sometimes that’s the way lupus makes me feel. My mind tries so very , very hard to stay positive, you know? Every day I wake up in a genuinely good mood. I really do. I am a seriously positive person. Ask anyone who knows me. That’s not bragging. It’s who I am. I was born that way. I don’t have a problem seeing the glass as half full. But , the problem is, that with lupus, you have two holes in the bottom of your glass. Constant pain, and mind -blowing fatigue. So no matter how hard you work to keep the glass full , it is constantly running empty. Empty. EMPTY. You’re tired. You’re running to the faucet. You’re filling your bucket. Dump it in the glass. Smile. The glass is full for a little while longer. But , only for a little while. Run. Run. RUN!! Empty again. Empty. empty. empty. smile. pick it up. pickituppickituppickitup……….that’s lupus. Then people begin to wonder. About why you feel stuck in between winter and spring. In that place between blue and grey. They haven’t been there , so they don’t see….. because they don’t have two holes in their glass…..they are only worried about the color, the color of their glass, the size of their glass, the shape of their glass, how much their glass cost…they just don’t see how much it cost me every day to keep my glass even halfway full…

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Benlysta Infusion #1~

Yesterday was my first Benlysta infusion! I was very nervous. I had heard good things, great things, terrible things, bad things, not so good things, mediocre things, and so on things. I didn’t know what to expect. The doctor seemed to think I was a good candidate. I did not respond to chemo at all this go around, so I am hoping that this will have some effect.
The hospital got it all set up, and we woke up early to arrive for my 8:00 am check in time. We checked in and got set up, and they called me back. To my surprise I got a pre-op nurse that I had gotten many times before for surgeries! Cindy. I really like her, and it made the day start off a lot less nerve wracking. She got my IV started and said that they have to mix the infusion right when you get there because the medicine is only good for 8 hours. They drip it according to weight so mine would only take 1 hour. They give you your own room, with a bed, television, bathroom, and everything. Chairs for visitors, so it’s very private. You have a call button, and they bring you drinks. I had Wi fi so I could use my tablet. I was told to expect nausea, vomiting or dizziness, but didn’t experience any of those. I did take a Tylenol and a Benadryl before going, and ate breakfast before hand. My arm felt very cold while receiving the infusion , but it wasn’t painful , just strange. I do feel very tired today! But , I felt exhausted yesterday, too, 🙂 so that’s not new! I don’t feel sick at my stomach today , so I’m hoping I don’t have that side effect. All in all, I have to say , I don’t feel WORSE, so that’s a huge plus for me. Anything that doesn’t increase the negatives, is a big deal in my life. Hoping that this marks a big step for me in the journey to wellness. Thinking of you all today , and as always , ((HUGS)) Ruby Jeanette

About Me~, Uncategorized

Forever and a Day~

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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