Friday, June 29, 2007

shootin' blanks

so i've probably filled you in on some of my health issues and health related what nots and how i'm really trying to come to terms with just how sick i really am. it's hard. i don't want to believe that my body, and now possibly my brain is failing me. one of the things that i'm dealing with is short term memory loss. at least that's the the doctors are calling it. short term memory loss(stml). short term. doesn't short term mean for a little while, temporary, will be over soon? well, i'm still waiting. this whole escalation of my diseases happened in october. on my wedding anniversery no less. i keep hoping that i'll wake up tomorrow and it will be all over, at least the memory issue.

yes, it's gotten so much better since october. truly. BUT. i'm getting frustrated. for the most part, i can see that i've come a very long way, and am very thankful for the support and prayers i've recieved, and i know that it will take time. time. TIME.

right now i'm sick of that. sick and tired of hearing that, of telling myself that. of being patient. you see, i'm the one that's patient with everyone.... except with myself. i don't know how to be that for myself. how to give that to myself. i should know how to, right? i gave to everyone else. shouldn't it be easy? well, it's not. along with a whole list of other things i should be able to do for myself.

i 'm tired of not knowing if i've had this conversation already, asked that question before. i have to write everything down. more than twice most of the time. i was in the store the other day and i saw someone i think knew me, but didn't say anything to me, just sort of "acted" like we didn't know each other. but i really felt like we did. there was something in her eyes that gave it away. all i have is my gut feeling. i don't remember, but sometimes i just have a feeling. it's really difficult to do so many things now. things that everyone takes for granted. things that i use to just do. like multi tasking (impossible practically,lol!!), or remembering how to get somewhere that you go a thousand times. just watching a tv show is a major challenge. its hard to follow, especially trying to watch movies. its all i can do to keep up with my ladybugs childrens programming the sprout channel! (you know, barney...). like the other day dh and i were going to get lb registered in her summer gymnastic camp. i knew exactly where it was, could see it in my mind. but i could remember how to tell dh where to go, or if we were even heading the right way. hell, i knew where i was, but didn't really know where i was! do you understand? it's more than just having a brain fart. you see, i was always the go to person. i knew everything, and remembered even more. i had this close to photographic memory. reliable like the sun rising and setting. now?

i use to be very well spoken, articulate, and cogent. a pretty good, and very confident public speaker, if i must say so myself. now...?? well, let's just say that it's probably all you can do to understand me. yeah, i'm typing like all is well, but trust me! this is not how i really speak. my sentance structure and spelling is that of a kindergartener. when i talk it sounds as if i'm deaf, or from some exotic country, or speaking baby talk, depending on how i'm feeling. it's so hard now to get my point accross. to say what i really am meaning to say. in addition to stml i have a combination of broca's and wernicke's aphasia. broca's is when it takes great effort for one to talk and have problems with grammar and speak short telegraphic sentences, such as "get water". wernicke's is when it's easy to talk, but i use the wrong words, the wrong sounds, or make up words. Much of what some people say may sound like "nonsense". i go back and forth depending on what's going on - if i'm tired, in pain, having swelling in the language center of the brain (vasculitis), or had a siezure.

everytime i look at dh or my ladybug, i get scared, angry, frustrated. it's also very funny. lb will say "ok momy, i'm going to have another cup of pudding because you're going to forget that i already had one". how can i stay angry, and frustrated for long? lol! i've since had to pull a 'mommy' on her and i pretend that my memory is just fine. i let her see me as i am except that. i do not want to put that on her. for some reason i feel like she can handle my physical disabilities, heck, she thinks it's fun at times (she gets to ride in my wheelchair with me sometimes, or play with my quite fancy shmacy cane!), but worry about the memory issues on her. she asked me one day if i was able to remember to take care of her, get her milk, cheerios, etc. the look of mixed genuine concern and fear and sadness on her face nearly broke me. my god i love her. oh, and the thought of my dh. i'm watching him now watching me struggle to type this. heartbreaking, really.

how do i describe to you what its like? i'm struggling with that. can you imagine looking at a picture of you and some loved ones, and having absolutely no memery, or even a feeling of it? nothing. just blank. that's it. just blank. i think that's the best i can do. it's blank. blankness. lots of it too. all running together.

anyway. i'm angry and frustrated and scared right now. very. i'm shootin' blanks. there. i do feel better now.

be well :)

Thursday, June 28, 2007

my thursday thought....

i've been wanting to post all week, but i've been really tired and not feeling so well. even now. i missed getting one of my scripts filled. it's a controlled substance so i can't just call in a refill. i've got to call my neurologist, who's office staff is just rediculous, then hope and pray that they got the message and gave it to my doc, who's pretty good, just her staff is, well, like i said, and then this time i have to wait for them to mail it because dh is on road trip for work and he usually picks it up. plus, one of my really good college buddies and his wife and daughter were in town and we had dinner monday, and we laughed, remenisced, ate and drank into the wee hours in the morning. so there. i'm exhausted and feeling so not so hot right now.

anyway, ladybug is in gymnastics summer camp for the next few weeks and she's liking it, but not liking it. i thnk it's because she wants her way all the time. it's perfect for her because she gets to jump, flip and run around which is all she wants to to anyway. but this is day 4 and she started whining about going this morning. that inner kid in me immediately started to empathize , but for the wrong reasons. yes, it would be easier to keep her home with me - i wont have to figure out how to get her there and back; i wont have to worry about both of us being presentable; and most importantly, i can sleep in. i'm exhausted! he, he! well, i want her to love it.

well, i'm going to go make myself feel better and do some scrapbooking....

be well :)

Friday, June 22, 2007

my newest addiction...

thanks to one of my sister ("cc"), i have discovered the wonderful world of scrapbooking. i just love it. i've never been the artsy fartsy type like dearest cc, who is just phenomenal! she took her house in georgia and turned it into a showplace. or like my cousin sony.

anyway, i'm a photo bug, always have been, use to develope my own film even, and i have easily tens of thousands of pictures in the garage. well, lb was in daisy girl scouts and her year just ending june 1 and somehow i wound up getting elected to putting together the memory book ???!!! something i've never done.

i figured i'd give it a try since i have nothing but time on my hands. well, it turned out wonderful, and i fell in love! so i've been running to michaels, target, and the little nieghborhood scrapbooking store down the street from the subdivision (dangerous) to get stocked up on supplies and what nots.

why do i like it so much for somene who really isn't creative at all, and always sort of didnt like arts and crafts in school? maybe because i'm anal, like details, am focused, and have a thing for gadgets. now that i've been doing this for about a month now, i'm seeing that these are some of the things required to do it. i do not have a creative eye at all. i just know what i like, and its usually when i see it. so in that way it's been very, very hard for me to start a page.

i've always liked the idea of arts and crafts, and admired those who were good at it ( i thought they were smarter). ironically, i get a daughter who lives and breathes it. the way she gets when we walk into michaels is how i get when i walk into whole foods or williams sonoma! well, school is out, so last week we went to michaels and spent a small fortune for us to do craft projects all summer. clay, paint, paper, craft kits, foam thingies, brushes, crayons, markers, glitter this, sparkle that. i can see how people go into bankruptcy in that place!

i made a beautiful fathers day card for dh and i am beyond proud. i can't stop looking at it. i made it. from scratch in my head.

i cant wait to get started on all the pictures i have in the garage! i'm going to start with lb and her kindergarten year. then i'm going to work on her and her "cousin/brother" nico. they are so cute together, especially when they were babies. and then my newest special love - sophia. scrumpteous. i gotta get nicknames for them.

life = create = share = pride

be well :)

Wednesday, June 13, 2007

mommy dearest and hubby drama part 1

aarrgggg!!!! I JUST CAN'T STAND MY MOTHER !!!!! she is a narcissistic self absorbed angry woman who's never satisfied with anything (no way to please her unless it's her way, and even then, it's a ?), and thinks that my dad (her ex hubby), my younger brother and i (hell, the world for that matter!) owes her because her life has not turned out according to the ozzie and harriet script. oh, did i mention the GULT trip she is masterful at laying?

my goodness... where to start?!?

well, here i go...she's a quickly approaching 60 year old divorcee (for almost thirty years now...) with two wonderful children, girl (me!) and a boy 8 years younger, who are responsible, educated adults, married with children and doing well in the world. oh, did i mention the guilt trip?

i just don't understand. and i realize that somethings just aren't meant to be understood. it's not like i was a bad kid. or that i had a hard childhood. or that i was beaten. actually, i was a pretty good kid - good grades, helpful, etc., and i wasn't beaten, and my childhood was no harder or easier than any other average middleclass kid, child of a reletively uneventful divorce, growing up in the late, late seventies and eighties.

so now that we're clear on those things, i'll try to proceeed succinctly. moms always treated me like i was in the way, or a burden, or that i caused her a certain amount of inconvenience. for example, i was born at 5:20am on christmas a happy time doubly so, right? nope. i've had to hear, until a few years ago, about how awful it was for her to be having a baby on christmas. i'm almost forty years old!! let it go!!! so of course i have tons of other anectdotes like that. did i mention the guilt trip?

i grew up hearing about how hard of a life she's had or how much she's had to sacrafice either in general ("i didn't had the opportunity to go to college; the only options for me back then were to ger married or get a job". or the other version,"i had a scholorship to go to college, but your grandfather said it wasn't necessary for me to go to school because i had to work" or something like that ), or supposedly for me (" i worked my butt off to make sure you've had everything you ever needed or wanted" or "to put you through college", or "i've bent over backwards to make sure that i would have a better relationship with my daughter than i had with my mother". whatever. major guilt trip layer on-er.

it never failed. she would always kick me to the curb or leave me hanging in some way, form, or fashion. usually to be vindictive. to get back at my dad, or me in some way because she percieved in her crazy ass head that i had done some thing to "get" her. that's how she thinks still. for another example. it was senior year. i had worked all summer as i had done since i was 12yo to earn my little money for the school year, because, according to mom, there are no free rides. plus, i never wanted to be caught in her crosshairs with nothing. so anyway, i was supposed to go to my jr prom and ended up not going. my uncle and one of his many, many dumb girlfriends were over visiting. i was leading them into the family room when my mom called me. i said 'just a minute mom, be right there'. my finger was bleeding badly and we had snow white carpet in the livingroom, so i went to get some tissue to keep from tracking blood on her precious carpet.

well, she screamed at me to "come here right now!!" in that awful, shrill voice of hers. i came of course, bleeding, and then she slapped the shit out of me. almost litterally, i wet myself. then she said for me to never ever tell her 'just a minute'. i was not allowed to explain. that was it. in her mind i had embarrased her in front of people, plus, she was in one of her many crazy and unpredictable moods. so, no prom. unnavoidable. something similar happened for my senior year - no class pictures, no class ring, no senior class trip. i dont think she knows about the cut even to this day.

in all honesty, i lived in a weird sort of fear/anger with her. you never knew, or know even now, what kind of mood she'll be in, or if something you say will rub her the wrong way and set her off one of her rants. oh yeah, and boy could she lay on the guilt!

ok, so fast forward to 'recently', meaning the last 2 years or so. as i'd said before, i got sick in '04, and even that was mired in mamma drama. i've been sick enough that i have needed significant help in some way off and on, especially while going through chemotherapy for the las 2.5 years. almost the whole time mom pretty much stayed away, not helping. everyone else was more than present and accounted for. and the way the pop came! i still get misty eyed when i think about how he's had my back, but that's another post. i'm giving mom her just due. anyway, she has told me some off the wall crazy shit. she's told me that it's my fault that i'm sick, and that god is angry with me and he'll have his foot up my butt til i get 'it'. and that she hasnt been around to help me on purpose because it was time for me to grow up. and that this will help me get my act together. excuse me, i didnt know my act was all so fucked up! actually, if i may say so myself, my 'act' is pretty damned together! (with a few minor exceptions of course, lol ;) hell, even my therapist says that given all the true and amazing bullshit that she put me thru, i'm pretty damn well adjusted! that i could teach a class or something. (which i'm thinking about because all my friends tell me the same thing). and she wines and complains that i cant hang out with her anymore (i use a cane or wheelchair and walk funny and cant be in the sun - and i think it embarrasses her), and that before she moved out here in january, she hated having to come all the way out here to see me, a 15-20 min drive (when i could drive, it was incredibly difficult and exhausted me. i cant drive at all now).

i was getting a bit riled up so i played a few rounds of computer solitaire. aaahhhh. ok, back to posting....

can you believe some of that shit?! there were times when i would just wish she would beat me. at least there were scars. i know that sounds just awful. because thats nothing to joke about. thats how serious her psycho mind games were.

now to come current. 3 weeks ago today, mom came over to pick up ladybug and take her to school, which she normally does now that she's moved practically across the street. literally. well, we had a blow up, which is a big deal, because i called her on her madness and challenged her. i never challenge her because she layes on major guil trips, and always commanded/demanded complete compliance and 'respect'. anyway, since i've been sick, my tolerance for bullshit in general is fast becoming nonexistant, so needless to say i'm up to "there" with mommie dearest. it has gotten so bad that dh doesnt even want her in the house, no interaction. talk about stress!!

so we havent really spoken since then until monday, and then again today. she dropped ladybug off and in classic mommy dearest fashion, decided that we needed to talk. well, i told her what i thought and felt, but am a bit bummed with myself because i feel that i really didnt go far enough. i kept it pretty light. like, i didnt tell her about how rotary's gone to her hear and that she's offended just about everyone with her dear 'rotary' she, she, poo, poo. so fuckin what your the damn chapter president! she acts like no one else has ever heard of rotary. i didnt tell her about how niether of her two precious children, or our spouses, want to be bothered with her because we all see thru her madness and manipulation and just dont want to be bothered.

but, alas, she always has to have the last word. so she called me yesterday, after she thought up and planned out what to say of course because that's what she does, to say that "she's so sorry for being so naive in thinking that the shear love of a mother for her children would make everyting ok" and that "to think that she's worked so hard to have this relationship with her daughter, just to find out that your child doesnt feel the same way", among other rediculousness. yeah, she's good with the guilt. wtf is she talkin about??!!??!

well, she wont be getting the last word. i'm going to write her a letter, which i've been planning on doing for a long long while now. nothing nasty. i'm just not sure how far i should go. any thoughts? comments welcomed.

i'm just too tired and emotionally drained to give this account to you too. just know that he's trippin (about nothing) as usual. and its all on me. as usual. and you wonder why i'm sick?!?!?
i'll fill you in on part 2.

be well :)

Monday, June 11, 2007


aahhhh. yes. nothing like a good round of S.E.X.

i had a great session with dh saturday and it was great! it was different this time though. it began as usual: me not really wanting to do it, hoping he'll fall asleep, or think that i was in too much pain to touch me. but doing it anyway because i think it's important in maintaining the relationship. since the lb came along, and my health issues, we both just didn't want to be bothered. me more than him though. lol!

anyway, this isn't an x-rated blog, so i'll move on. i just really wanted to say that sometimes sex is more than just sex. sometimes it's spiritual. i hope you have experienced that.

Thursday, June 7, 2007

what does THAT have to do with anything??!!??!!

ok. let me preface this post by saying "i love my husband". he's a pretty good guy, most of the time. right. most of the time. he's still a "guy", and all that that means, which in fact means that he does and says, at times, some of the most senseless, unexplainable, pointless, rediculous, thoughtless (i could go on-lol) shit ever.

he's a guy so he's not really 'thinking', so i let him off the hook often enough because i'm not one of those women who'll beat a dead horse about some shit that has nothing to do with his world, or how he processes things. well at times i do. hey, i am still a woman (giggle). but what i'm trying to say is this: most people, especially men, in some form or fashion tell you who they are. be it through thier actions, how they react to things, or not, or just plain what they say, they tell you who they are. trust me, think about it, you know, hindsight? it's up to you to see it. and sometimes we just can't. you're blinded by love, the person is a slick willy or is just good at 'covering up', or you're just plain dumb.

what i also recognize is that he and i have been together for about 15 years or so, and i heard what he was telling me all those years of dating. i take into consideration that he's in his own world and that he sees and processes things completely different than i do. it saves me alot of head and heart aches. but that doesnt mean that everything is hunky dorey. oh no. lawd know's we have our issues. of course we do, we're two completely different people with different communication styles and vastly different backgrounds. however, because I heard and saw what he was saying, we have a lot less relationship drama than so many of my freinds and family. and i'm thankful.

HOWEVER!!!! there are so many times where i look at him in awe due to something he's said or how he's, or his just not getting it. or i just plain want to knock him upside his head.

case in point: ladybug's last day of kindergarten is tomorrow and they're having a class party. we're suppose to bring the juice. i think. why? well because genious threw away all of her school related papers. of course he did. why? well, it is the last week of school, right? btw, thats how i found out that that's how i missed her class on monday (see post#2). anyway, i realize this and say, 'hey babe, i'm goin to run to the store to get some juice'. so of course ladybug wants to go with me, but she's already got her pajamas on, and i just want to run in and out quickly. so genious says aloud,'why cant she go with you? what's wrong with her in her jam jams?' so i tell him whats wrong, and that i want to be like him when he runs to the store childless. well he wont let it go and gets ladybug all in the mix. i suspect he's just trying to be messy and start some shit because lb is cranky and tired. i hate when he tries to fuck with me thru her. AND most importantly... I'M NOT SUPPOSED TO BE DRIVING due to my neurological issues. and he wants me to take her to the store with me?????!!!!! i pointed that out to him and he sat there with this stupid look on his face like i'm persecuting him. do you feel me out there? ggrrrrrr.

its straight comedy up in here. really. between him and lb, and some of the things that come out of they're mouths....i have so many examples of marital relationship communication hilarity that i've been told by family and freinds that i should write a script. see, that's the good thing. with all of his (and mine) bullshit, and my serious health drama, we really laugh and love hard. that and the sex is the only thing keeping me from killing him.

so like i was saying earlier. i knew way before we were married that he had (still has) the propensity to be just plain not at home at times, and just brilliant at others. and that at times i just plain want to wring his neck.

but the sex is great and he was/is sooo damn fine!!!

help...... me...

doing it. my secret addiction...

i do it while i'm watching tv. i do it while i'm talking on the phone. i do it while i'm geting chemo. i do it while i'm doing computer work. hell, i'm doing it right now.

i sneak and do it. i don't want anyone to know that i'm doing it. late at night, in the dark. i nod off while doing it.

over, and over, and over again. my fingers are going numb, joints in pain and swelling. hands arms head eyes shoulders hurt. can't help it. got to DO IT.

does dear hubby know?

it soothes me and comforts me and calms me and excites me. doing it allows me to feel as though i can still multi task since i've been sick. doing it allows me to drift off and zone out. it feels soooo gooood. i just love doing it.

hi. my name is princess tinybutt. and i'm a solitaire addict.

there. done. i feel better now. actually, let me do another quick game, or two, before i finish this post.

be well....

Monday, June 4, 2007

whah?! no class?! umpf!!

well, i had a rough night last night after i signed off. sleepy, yes. sleep? no. i was in quite a bit of pain. i don't know why. i haven't changed any of my meds, other than being stubborn about taking them - ha, ha!

what's the story you ask? ok, well, like i said in the first post. i have several auto immune diseases that are attacking me. you see, i am a classic over achiever and, like everything else i do, i got it good. um, well, bad.

it started in '04 when i callapsed and dear hubby (dh) took me in to the er. i spent a few weeks in icu, critical care, then finally oncology. after getting the diagnosis a few months later i began chemotherapy because the diseases were/are agressive in me - attacking my lungs, heart, muscle tissue, and viens. steady as she goes in and out of the hopsital a few times 'til october '06 then BAM!! i had a siezure and fell down the stairs. i spent a few more weeks in the hospital then the docs realize that it's in my brain. my damn brain. it has affected my mobility, speech, and i now suffer from short term memory loss. it's been rough. and i'm still here. i'm too damn stubborn.

so there's the part of the story. back to my post...

so, i had a hard time sleeping as usual. i get up to get ladybug ready for school this morning, but i'm feeling soo bad. when i feel like this i say i'm having a 'luppie kind of day'. the good thing is she doesnt have to be at kindergarten until noon, so i can take my time to shake off the lupies. anway, i washed ladybugs hair last night and really didn't feel like cobming it. i get her off to school and we're looking for her class, only to realize that not only did i forget her lunch, but class is over. OVER. it's the last week of school and they go from 8am to noon. UUGGGGHHHHH!!!!

i was so flustered and flabbergasted. what? how did i miss that? ok, yeah, i suffer from short term memory loss (stml), but still, i am one of those anal retentive organizing, planning, cross-checking freaks. even more so now. so, still, how did i miss it?? then i got mad at dh. he's supposed to be backing me up. he's been pretty darn good thru all the health drama - figuring things out, dealing with the doctors, insurance, medications ect... a very big deal for him, because you see, i've spoiled him. damnit!! he's back in his world now.

you see, our relationship has been/still is based on me doing everything - planning, figuring things out, paying bills, what's for dinner, shold we et this type of insurance or that one, yada, yada, yada... you get the picture, right? he relyed on me for everything. even to think for him (at least that's how i felt/feel at times... "shall i hold your dick for you, sweety?"). danm, damn, damn - he's back in his world now.

really, he is a good guy. so way better than alot out there. why? well, lets just say, uhhm, well, i hope and pray that your dh, spouse/partner/mate would wipe your butt and figure out how and where to put a panty liner on for you. things along those lines make up for him being a guy and a bit emotionally unavailable at times. but he really tries. that's another story for another post. it's getting late and i have to get ladybug to school by 8AM NOW. grrrrrrr......

be well :)

my first post!

wow. this is my first post. heady. i've been wanting to start a blog for a while now, and, for some reason, the idea intrgued and excited me, but scared me as well.

it's late on a sunday night, with a re-run of an oprah show - her favorite things for the summer show - playing on the tv. my little 5 year old ladybug, and my other half are upstairs sleeping soundly as i type. heady and excited at what i've just done. it's my secret for now. sweet and savory. mmmm.

i'm so excited that my disease riddled body is starting to ache in a familiarly bad way. uh-oh. a mini flare? or, OMG!! did i take my bedtime meds? hmm.... let me go count the pills to make sure. yep. i did. relief!! my life. i'm a pill popper now.

shucks. now my fingers, wrists, elbows, fore arms and on, all now ache. this damn lupus, ms, cancer, mixed connective tissue disease, interstitial lung disease (pulmonary fibrosis), vasculitis, whole autoimmune system shutdown, whatever the hell...

i'm hating it right now more than usual, because i really want to finish this inaugural post and play around with my new found freedom, of which i've been seriously lacking lately. but i cant. because i hurt. badly. yet i type anyway. with tears in my eyes as i listen to the beautifully full rich voice of india arie. mmmm. ...

i forgot for a moment that i'm mad. mad at those damn diseases. and i'm sleepy too. which, really, i should be happy about. due to all the meds i'm on, and the pain, sleep is a moving target for me.

no worries, no feeling sorry. my life is GREAT. i'll fill in the details later. i really have to go take some pain meds and lay my head down. hey, have you all seen that new pantene commercial? i just love it!! 'SHINE'.

well, i guess i'm no longer a blogger virgin. feels good this one. he, he!!

be well.