Well, I survived the carnage of the holidays, at least until New Years. I know my last post was very Grinchy and I apologize. I’m not sure what had gotten into me. Holiday overload I suppose. I am looking for 2014 to be better truly. I would so love for it to start out with better health for me, but don’t know if that’s realistic. That’s a funny thing isn’t it? Someone once asked me what was the difference between my reality and my positivity ? Wow. Deep question I guess. I’m not sure, really. I guess, the reality is I have lupus , have had for 21 years now. 5 of those were undiagnosed where I went around in a hell of doctors just telling a 14 year old kid she was a nutcase. The reality is I have heart failure, Super ventricular tachycardia, dysautonomia , meaning lupus has fried the controls on my nervous system beyond repair. The reality is I’m 35 , with 2 children , a husband , and I can’t stand on my feet for longer than 10 minutes without passing out. That ‘s the reality. The POSITIVITY is being angry about any of those things will not change them. Positivity is realizing that I am still on THIS side of the flower bed today. The positive side of things is , I am about 5 years past the point one doctor said I would live, without a heart transplant. So what ‘s the difference between living in reality and positivity? You decide that , “Yeah, I was born with this incredibly fatal disease, and it sucks. I didn’t DO anything to deserve it. IT SUCKS. I might die tomorrow. ” But you know what? YOU might die tomorrow too. And you’re completely healthy . For we are but a breath. You could be in a car accident, you could suffer a fall, you could be mugged. THAT’S REALITY. So WHY NOT , FIND the POSITIVITY?? I choose to.
Okay, is it just me , or did it SEEM like Christmas started in September this year and should already be over? And is it also just me, or did the Holiday commercials SUCK in a big time way this year? I mean seriously , KMART? You think THAT’S what people want to see? I may NEVER get that image unburned from my eyeballs. I hate to sound like a Grinch, but I was ready for Christmas to be done at Thanksgiving. I normally REALLY love the holidays, and yes, I have been way more ill this year , than usual , but most of time I can squeeze a little festive cheer out for at least December, which includes my birthday AND anniversary by the way. But this time, I am just like, Oh, good gravy on a goldfish, let it be June of 2014 already. That way we are even past Easter but not yet at the 4th of July . I must be positively un -American or something. But I am sick of it. SICK. OF . IT. I just feel so monotonized by it all . Like being stuck on a terrible holiday ferris wheel. And I want off, but every time I pass the operator , he’s like , “NEEEEXXXXTTT UUUUPPPPPP HAAAAALLLOOOOOWWWEEEEN!!!!” and around we go again. It’s all I can do not to jump off the wheel and commit holiday suicide. Sheesh, Today’s Christmas Eve, and all I can find myself doing is counting how many days there are between Christmas and New Year’s and then how big a break between then and Valentine’s . I SOOOOOOOO would not have been a good pagan , what with all the festival going and what not . I’m afraid they’d have thrown me out of the local village a long time ago.
UHF. I ‘ve missed a couple of days writing here. I hate when that happens. I’ve written . I mean , I never go a day without writing something down. My brain hands won’t allow that.
Today I had doctor appointments all day , and so my schedule has been all messed up. I usually rise at 4 am , and do my lupus support page. I have almost 1600 followers there now. It’s a place where people with lupus or their family members can come and be inspired, have a laugh, ask a question, or just want to seek understanding for what they are going through. Then I try to come here and write , either a poem, or just something that has inspired me somehow. So , I ‘m trying to get back on track.
As for today I’d have to say , I guess I’d like to say I ‘ll have to write about something I found totally surprising. Something I would never thought would have happened. My oldest son, is 15 now. We’ve always had a special relationship, I was very young when I had him, only 18. He had special problems, and I perhaps was a bit overprotective. Joseph went with me everywhere. I didn’t let him out of my sight. He was my little hip attachment. He sat in his car carrier , outside the shower curtain when I showered so I could talk to him , “What ya doing out there buddy? Mom will be done in a minute. , Okay?” . Instead of riding in the cart of the store , I carried him in my arms.”What should we get Daddy for dinner today, maybe hamburgers?” . He slept between my husband and me. He didn’t stay with a baby sitter, and he didn’t go to preschool. He was my conversation buddy, all day, every day, “How bout we go to the park? “or “Boy ,it’s raining , let’s color Grandma a picture.” I didn’t work. People everywhere asked me, “Don’t you get SICK of having him ALL the time?” , or “GOOD grief, DON’T you EVER go anywhere without him?” but I just couldn’t bring myself to do it. His smell, the feel of him. The weight of him in my arms. The sensation of him beside me in bed. The knowing that I was responsible for his care, and the look in his eyes when he gazed at me. He grew older and when he was was 7 and 8 years old he was still my friend, and still spent his time with me. We read books together, and did school together . 10, 11, 12, and now he is 15, the story is still the same . Oh sure, now he sleeps in his own room in his own big futon. He has a big teen boy room. And other friends of his own, but today we were at the doctor’s office and he wheeled me back for my consult at the cardiologist. We sat, and were just carrying on conversation, like two friends who had know each other their whole lives. And then it dawned on me, that’s exactly what we were.
I wonder if you see me ,
if you really care,
If I’ve become some spirit ,
just passing through you there.
A will’o’wisp with no real form,
to tie me to your sphere,
I am just a haint to you ,
with naught to hold me here.
We used to be lovers bold,
and cared naught who saw,
held tight with bands of brightened gold,
without a taint or flaw.
But you have found another,
who’s caught your soul from thee,
torn it like a paper mask,
worn on Hallow’s eve.
So tis not I , the haint,
but you my dear,
and you don’t realize,
the spider caught you in her web ,
and drained you with her lies.
Someone once asked me kind of a scary question . I was actually really , really afraid to answer it. I am a really honest person , so when people ask me things, they get , “The truth, the whole truth, and nothing but the truth, so help me , God.” Which in some ways is nice, if you’re my friend you get my unvarnished opinion. I mean , if you say , “Does this make my butt look big,” and it does, then be prepared to be offended, if you didn’t REALLY wanna’ know, ya’ know? But it has it ‘s drawbacks, not everyone really wants to know the truth , I guess, cause the truth they say sets you free, and I’m not sure some people want to be. But anyhow , sidetrack, sorry. Back to THE QUESTION. The person wanted to know what was it like inside my mind? Now that’s a rather personal question, no matter who it comes from, but it came from a small child, who I think was kind of wondering WHY I wrote all the time, and read all the time, two things I’m kind of , no , I take that back , seriously obsessed with. So since a little kid asked , ( happened to be my own little kid at that) I answered honestly. I told them, something I had only told one other person ever before. My brain never shuts off. EVER. Not even when I sleep. The ideas just go round, round , round and round. Stories, poems, people, places, words, dreams, past, present, future, together, apart, singles, doubles, ping-ponging their way to places unknown. Most of it I remember when I wake up and am just too exhausted to write it all down. If it’s poetry I try to. Some of the stories if they’re especially interesting. It’s always been this way. I don’t remember ever sleeping like people talk about sleeping. No, I go places. I guess the only time I can remember my brain ever being quiet to be perfectly honest is while under anesthesia for surgery. 24/7 365 all the time of my life I’ve remembered it being this way. Is it exhausting? Absolutely. Would I change it? I don’t know. It scares me either way. If I made it go away, would the poetry , writing, creative part, be gone? Could I string a sentence together? What would be the price to pay for ONE night of dreamless sleep, and could I, would I pay it?
I have not been nominated for a ton of things in life . I mean some of my writing of poetry has won awards. My blogging has never really been nominated for anything. My mom says she thinks I’m the bomb diggity , but what ‘s SHE supposed to say? Needless to say , my friend Krishnan over at the NAIR VIEW has nominated me for the DRAGON”S AWARD , she writes this totally weird, (in a good way!) wacky and wild blog about anything and everything , from the other side of the world, so here’s her link if you want to check her out, much love to Krishnan for this totally unexpected honor! http://wp.me/42AxN
Part of this award comes with a price , quite like standing in front of an audience and I have to share 7 things that other bloggers might not know about me. Now this is actually going to be really , really hard, because when I blog, I blog HONESTLY, as in “DUDE, I just sneezed and snot flew out my nose honest.” ( That just happened by the way.) But , I’ll give her a go.
7 THINGS the BLOGGING WORLD MIGHT NOT KNOW ABOUT ME~
1. I’ve never consumed alcohol, smoked a cigarette or taken illegal drugs.
2. I’ve read over 10,000 books in my life , SO FAR.
3. I’ve had basically everything you can have removed from your body surgically ,
and still live. (Internal organs,I mean, gross, but true.)
4. I have an obsession with counting the tiles in the floor of whatever bathroom
I happen to be in.
5. I am a bibliophile. If you didn’t figure that out by number 2 , my apologies.
6. I cannot stand the sound of Styrofoam scratching together. Kill. ME . Now.
7. I am an oddball, a little bit weird, kind of a kook, somewhat on the strange
side. If you did not figure that out from numbers 1-6 , my apologies also.
Now , let’s see since Krishnan has been so generous, I must now pass this generosity along and nominate some other bloggers for this honor! Muahahahaha, I almost feel fiendish, as I WANT to read the 7 things. Isn’t that awful? That’s the only reason why I want to nominate someone so as to read their 7 things? But here I coooooome!!!!
So for their astounding contribution to my world of reading, I don’t have a ton , but here we go,
http://lethargicsmiles.wordpress.com/ Lethargic Smiles /living life with chronic illness and a smile on my face
http://red4foxtrotbravo.wordpress.com/ Red 4 Fox Trot Bravo / My Journey to Set Foot on All 7 Continents
http://lupusadventurebetweenthelines.wordpress.com/ One Patient’s Positive Perspectives
So , I did it! Thanks so much Khrishnan! I don’t know why in the world you stop by and read my craziness but I appreciate it. For those who want to follow Khrisnan , I know I put the little bitly thingie at the the top but here is the whole shebang http://nairview.wordpress.com/
Have you ever had someone make you so angry , that you were struck with laughter? I mean literally ? You laughed? That the person could be so absolutely so gobsmackingly stupid as to say something so baldfacedly in-your-face that all you could do was to laugh? I have , and just today. And the problem was it was my teenage son that said it. I mean don’t get me wrong , I love my boys, and they are good boys. Just about 99.99 % of the time. But every now and again one or the other of them says something that you are just struck either completely dumb, struck with laughter, or with the absolute desire to run screaming for the hills. I know completely that my mother stood over a cauldron with herbs and a little stirring stick and said the words to curse me, for I have a child who is the spitting image of meself. In face, in body language, in compassion , (people tell me, not I, in heart also ) , oh but also , also , in that wee bit of rebellion that rises up and says ” Make ME. Just MAKE ME” And let me tell me you if it had not been for my dear old Dad , I swear I would not speak with a full set of teeth now, for I was twice the handful he is , I assure you. My mother earned every one of her beautiful grey hairs. I know I will make it through these times for they are 13 and 15 and we have not far to go, but whew. This morning I was tempted to run to my mother’s just up the hill and beg forgiveness for every gobsmacking thing I had ever said or done , and beg her to reverse the curse, but then I thought , “No , this is my due penance, and she is deserving of watching me pay it. ” Then I thought I shall go to the kitchen and get out a own cauldron this eve, and say some things of my own.