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Thread: a little bummed/a little excited today

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    Default a little bummed/a little excited today

    hi all, hope all is well with you and yours today. it's like spring time here in hercules. it's a sleepy little town about 20-30 min north of san franciso, situation right on the water in a picturesque little valley (think the "happy cows of california" tv ads). big biz has discovered us though, and we just finished a burst of home development. i do hope the city will keep a lid on it!!

    ok, enough. i'm a bit bummed. i just came out of a round of cytoxan/rituxan and had been feeling just awful all last week. well, with the weather being so pretty right now, i am really missing my ability to drive. in addition to heart and lung involvment, it now in the brain. so i have seizures that we haven't quite gotten under conrol, and unil we do, no driving for me! which i ABSOLUTELY LOVE TO DO!! it's so freeing, and you get to blast the stereo , open teh sun roof, and escape to beautiful places. one of my faveorites is a little bench seat perched on a cliff just above the golden gate bridge, overlooking the expanse if pacific, s.f., and the bay all in one glance (FANTASTIC!!), not too far up, just past the first few tourists stops. i don't know why, but it's never crawling with people :?: u may have seen me and my secret lover? - my pretty, shinny black volvo 850 T5 with 324 little horsies under the hood.....GIDYUP GIRL!!!!! LETS GO!!!! listening to those 6 cylinders (or is it 8??) humming, 75mph down a 2 lane road, steering wheel vibrating in your hands........mmmmmm almost as good as S.E.X.!! :lol:

    whew, ok, i digress ops: now you know some of the secrets of my dark little heart :lol: i miss my life before october 3, 2006. pre siezure. i want to work too! i have all of these GREAT ideas. time, time, i know it takes time. right. time. wait. stop. is work that important to me that im willing to risk my health? why must it be that serious anyway? i love what i do. i help people change they're lives for the good. i love the way that i do it. i need that. it's purely selfish you understand. it helped me feel alive, and i feel i need that now more than ever before.

    so now im looking for thngs to replace what i got out of working. boy is it hard! ok, that's all for the whining. i never make it long, an dtry to stick to just one thing at a time :lol:

    now, with all that said about me missing my freedom and ability to escape... im excited because i signed up for our local paratransit agency. and as i type this, im waiting for the paratransit shuttle to come to take me off to my local Target for my first experience. i really dont have a reason to go, other than to want to get out of the house!! i'll let you know how it goes!!

    be well

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    Hey!
    I know its hard to give up the things you love to do, but your health should always be a top priority. I had my first seizure in July 2004, a month after being diagnosed with kidney lupus. In medical terms, it was known as a tonic-clonic grand mal seizure. The MRI I did showed mild lupus cerebritis. Since then, I haven't had seizures. But two weeks ago I fainted and had some convulsions for a very short time.
    I'm scared of having another big seizure. How often do you get seizures? And what was your diagnosis?
    I'm on 300mg of Epanutin, been on it for 2 1/2 years now. What I don't understand is why I'm still on it when I haven't had a major seizure since the last. Everytime I have my blood epanutin level checked it's low. The doctor thinks I'm not taking the medication.
    Please tell me more about your experience with seizures if that's alright because it sort of relates to me.
    Good luck,,, take care of yourself
    I was diagnosed with lupus nephritis, confirmed by bloodwork and kidney biopsy, and mild lupus cerebritis (epileptiform) in June 2004.
    Medications: CellCept, Prednisone; Phenytoin; Lipitor; Zestril, Norvasc; Aranesp (darbepoetin alfa).

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    Hi Angela :lol:
    Welcome to our family! Your descriptions of your little car and your favorite place were quite vivid. Have you ever thought about writing? Maybe short stories? I sense a natural talent in you!
    How was your trip to Target? I hope you were able to find some enjoyment!

    Once Again.........welcome! Please join us often!

    Peace and Blessings
    Saysusie

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    Default I DID IT and it was fantastic!

    WOW!! i went to Target ALL - BY - MYSELF!!!! i used our local paratransit service, they came to my house, took me to target, and then took me back home!! lovely!! it went so smoothly! hey, it's not my volvo (which i affectionately call 'my t5'), but it'll work!! :lol: you see, i haven't been ANYWHERE by myself since october 3, 2006. i've had to have 'babysitters' with me 24/7 until very recently - 2 weeks ago, because of my siezures and having to care for my little 5 yr old ladybug.
    so this is MAJOR for me. i sat on the shuttle lift van and cried.

    any way, thanks say susie, i appreciate that. i've never thought of myself as a writer. i love the idea of it though, and i admire writers because i love to read. it always seemed hard to me, i guess because i made it hard (you know, school essays and reports??). yesh, i've been toying with the idea of a blog, because some of the stuff that's happened to me since october has been just hilarious, along with dear hubby and ladybug, i'll keep everyone in stitches!!!

    well dandoon, i was diagnosed in 2004 w/ lupus and vasulitis. in oct 2006 i had a siezure and fell down the stairs further injuring my brain on the left temporal area. i suffer from short term mem loss, speech problems, severe aphasia, and significant mobility issues on all of my left side. they think it's a combo of the brain injury and lupus in my brain. i have about 3-5 siezures a day, and i'm aware while i have them, i'm just not really "there" while it's happening. i cant talk or interact with you and i shake or tremor alot, not violently or anything. sometimes you dont even realize i've had one until you talk with me because for about 10 min afterwards, my speech slows down dramatically and it's rally hard for me to talk, and i may tremor more. everythings back to normal after about 10-20 mn. the siezure itself lasts for about a minute or so.

    you may not have had any siezures because of your medication dandoon. i have tappered myself off of most of my siezure meds, except for lyrica which i started to tapper yesterday. im afraid of the more stronger ones like phenobarbitol, dilantin (sp?) and the like.

    feel free to pm me if you have any more questions for me

    be well 8)

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    Congrats on the 'solo trip' Angela! ***BIG CHEER!!*** Independence is something we all take for granted until it's compromised in some way. I hope someday soon you'll be back in your little Volvo, toolin' down the highway! (I can relate...I absolutely LOVE to drive!)

    Jody
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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    Hi Angela!

    I'm really glad that you got to go out on a trip! CONGRATULATIONS! Soon you will be in your Volvo again with the wind in your hair! :lol:

    Keep well!

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    i went again today, with anoher trip scheduled tomorrow!!! i am so thankful and glad that services like this exist!! yeah, i wish it were my T5, but it will do for now. i went to the mall to get a mani/pedi and eye brow wax. i feel human :lol:

    thanks jody and history lover im so thankful that you all understand! dear hubby and family just don't get it. he wants me to be in my wheelchair all the time becuase its easier for him :x frustrating!

    anyway, i sat in the garage this morning after ladybug went to kindergarten and i turned on the T5!! oh it sounded so good, and felt so good. i just miss driving.

    anyway, thanks for understanding everyone!

    bug hugs

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