Friday, November 7, 2008

a small trip back

i've been really under the weather lately physically, and emotionally. so, since i've written about feeling this way before, and feeling the need to still write about it. i just thought i'd repost and earlier one. interesting how not that much has changed really.

i'm not on regular chemo treatments; i get them "PRN" (means as needed), only if i'm having a crisis, or the disease gets aggressive. actually, if i can go another 30 days my docs will declare me stable, but not in remission.

in the meantime, here's how i'm feeling:
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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 (as of 10/06) 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 2006. 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.
"

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and i do feel better now. thanks for being here.


be well, be strong :)

5 comments:

Lovebabz said...

We need a little christmas right this very minute, Oh we need a little christmas NOW!

Princess Tinybutt said...

oh yes, we do. i'm hanging in there, and am feeling better, just needed to vent a little bit. :)

princessdominique said...

I HAD NO IDEA! I hope you're feeling better right this minute! My thoughts and prayers are with you.

Torrance Stephens - All-Mi-T said...

good for u

Princess Tinybutt said...

hey fellow princess, yes, i'm feeling MUCH better! thenk so very much for yor prayers, i so appreciate them :)

thanks for always stopping in to check on me dr. t :)