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BARBGEO's Photo BARBGEO Posts: 784
8/9/09 4:16 P

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I LOVE naming your tumor... GRIN!

The driving is getting very interesting...of NOT driving. Since I have not been driving (about 2 or 3 months now) I am REALLY isolated and feel frustrated. But the worst is MY HUSBAND IS A ROTTEN ROTTEN DRIVER! he flown through a stoplight (after stopping like it were a stop sign), gotten one speeding ticket AND wrecked my car (his son is using his car right now). hahhahha! ???? So, that stuff I got on FREECYCLE ended up costing Jim nearly 900 $$ in damages! whooohooo.

I want my driving back!!! He is scary.

My meds have been upped, AND my neuro is going to a different hospital. So here we go again...

I am so glad everyone is checking in here! I am real busy with family in and out but do check in as I can!
HUGS!!!!!!!!!!!!!!!!!!!

All the best,
Barb G


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RONDARC's Photo RONDARC SparkPoints: (203,925)
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8/8/09 2:16 P

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PAYROLLDIVA, love it that you named your tumor!! great name too!! emoticon
I still have some tumor left, it had grown into the tentorium of the brain and my Dr didn't want to take any chances of nicking the brain and where the tumor was, he nibbled the scull away (his words!) so I have a hole in my scull. Now I need to come up with a name! DH & I do call me a numb scull because the back of my head where the surgery was is numb.

Blindfold me or have it dark and I can't move. I don't know up or down or sideways! At night I use to turn on the light by my side of the bed but we started leaving the back porch light on as a night light for me.
When I try to walk in the dark or can't see the floor it's the weirdest sensation, when I go to put my foot down, I don't know where the ground is going to be....

~~ Ronda~~

If you make up your mind to be happy there's no reason why you shouldn't have a fairly good time.

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SDANLSON's Photo SDANLSON Posts: 1,173
8/8/09 12:33 A

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One thing that shows up with me is that I drift to the left and show more compensatory zigzagging. This gets much worse in very low light since I loose visual adaptation. It also shows some worsening if I have bad sinus congestion or I am very tired. I might not do too well trying to walk a straight line. Blindfold me and I don't have much of a chance. I would still pass the breathalyser test at least.

Another thing that can show up when I am very tired is a little drooling on my left side. I used to carry paper towels for that problem when I was in the locked post coma ward. That has been a while though.

Some things I don't need any more help with. I tend to fall and have choke problems several times a month now. The choke problem is something that seems to be worsening over time.

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PAYROLLDIVA's Photo PAYROLLDIVA Posts: 48
7/27/09 6:28 P

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Welcome to SP! I too am dealing with the brain issues... only mine is a brain tumor I am forced to live with and believe me sister... I am unwelcoming of it to say the LEAST *giggles*! I named it... it's an astrocytoma and I kept calling it "a**hole" so I combined them to name it astrole! It makes me have seizures so I am very drugged up...err go the "drunk" feeling as well. I am unable to drive though because of the visual distortions and seizures it causes me to have. As far as apologizing... I have never and will never. People here in the US for the majority are very and immediately judgemental of anything out of the "norm". I can't help my illness and I am definitely not going to be made to feel bad about it. Feeling bad about it won't change anything, that's for sure! As a person I just try to always stay happy and positive because I believe negativity feeds astrole and I DEFINITELY don't want to do that! I love to meet all people... everyone brings uniqueness and interersting life stories to my life. People don't have to like me... they only need accept me and if they can't... they know where the door is! Good luck in your weight loss venture and please feel free to add me as a buddy... when dealing with weight loss I can use all the help I can get LOL! emoticon

Whether you live your life to love or love to live your life... you will always find happiness!!


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MYCATIZZY's Photo MYCATIZZY Posts: 447
7/18/09 5:06 P

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I have often thought about being pulled over and what would happen. After the goat chasing incident, (she ran away from me and up to the major highway in front of our house) I realized in a moment of excitement that I had trouble and wasn't able to call for help on my cell. I have had to go from a smart phone to a simple phone. My husband and daughter have been very good interpreters - they fill in the blanks when I hit a dead spot in my words. Thanks for sharing your personal feelings.

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MS2BTONED's Photo MS2BTONED Posts: 185
7/6/09 7:14 P

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THANK YOU so much!!! I laughed so hard I made my stomach hurt and then I thought this is great to have friends to laugh with that understand what I mean. I got dizzy just thinking about putting my head back, I hate to think where my finger would end up, knowing me probably right in the cop's eye emoticon . I sometimes pull off the road if a cop gets behind me because I get so nervous I know my driving gets worse. What is really bad is after I pull off at a gas station or whatever and try to regain my composure (as much as possible) and let all the cars and the cop go by and then venture back out on the road, I pass the cop coming back from where he turned around. The things we do trying to adjust to living with BIs!!!!! You guys are GREAT!
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RONDARC's Photo RONDARC SparkPoints: (203,925)
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7/6/09 6:39 P

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Hi Linda, welcome to the team!!

You guys are soooo funny! Sometimes I feel like I'm the only one and I get so frustrated. Yep, I feel like I'm drunk most of the time. I was watching COPS one night and they were showing people getting DUI tests and I told my DH that I couldn't pass one of those if my life depended on it, LOL. Especially the one where you lean your head back and touch your nose, I'd fall over backward!

emoticon emoticon

~~ Ronda~~

If you make up your mind to be happy there's no reason why you shouldn't have a fairly good time.

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SDANLSON's Photo SDANLSON Posts: 1,173
7/3/09 1:18 A

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My speech was also permanently slowed, but since I am no longer able to speak as quickly as I used too, I am now pretty closed to normal rate. Early post coma I used to be so slow finding the words I wanted that people would try to offer choices and I would forget what I had been trying to say. That was very frustating and confusing.

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SDANLSON's Photo SDANLSON Posts: 1,173
7/3/09 1:11 A

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The thing is, that the longer you have permanent defecits the more you seem to adapt to them and some things people only seem to notice when I point them out with my adaption. Most people see but don't really notice my head tilt since it is always there and they don't see the head turn unless unless I point out that when I am interacting with someone that I am able to look directly at them because I have angled my body. I never have figured out how my constant balance corrections are not readily wisible since I am doing it all the time. I guess it is because I have been doing it so long that I don't have to think about it except when I have a major headache from sinus congestion or something. I do fall considerably more than average, but I rarely get more than a few minor bruises unless I am somewhere I can't manage to modify the way I am going down. I doesn't bother anyone else if they don't see it.

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BARBGEO's Photo BARBGEO Posts: 784
7/1/09 8:42 P

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I think this is GREAT! We all feel like this sometimes.

Right now my pet peeve is that I am no longer able to drive... Sounds like a drag, right? Well! Let me tell ya! I live 8 miles up a mountain... there is NO public transportation here. My neighbors either have yackin' kids or cannot shut up themselves (so it makes me nuts to ride with them) and my husband is clueless... He plans his little 'trips to town' for late in the day, which is out of bounds for me.

While I love where I live, and enjoy the farm and all, part of me just really wants to pack it in and move to town. HA. The real estate market is not going to let that happen...

I too can sound and look a bit drunk... I came up with 'sorry, words are bad...' and that sort of gets people awake.

Right now I just sorta hate this TBI life. GRRRRRRRRRRRRRRRR!

All the best,
Barb G


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MS2BTONED's Photo MS2BTONED Posts: 185
7/1/09 6:35 P

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That is so funny that you mention the being drunk feeling because I am always saying I know if I get stopped by the police for a traffic violation of some sort (probably weaving)I know they will arrest me for DUI because I can not walk a straight line and I definitely can not do the heel to toe thing. My balance is all messed up because of losing my hearing on the left side from the surgery for the tumor. After I had the mini stroke the whole left side of my body was left weaker which can be so frustrating at times because I am left-handed and always kind of favored my left side. We do learn to cope and re-train and I am thankful that I am alive against all odds but that does not stop me from being human. Welcome From England, it's nice to share pet peeves with someone who knows exactly what we mean!
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AT49THISIS4ME's Photo AT49THISIS4ME Posts: 4,967
7/1/09 12:28 P

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yes. because my speech has been affected i have to repeat myself most of the time i say sorry for that, and i twitch sometime so with these 2 things added together people assume i am drunk which also annoys me too


my name is linda
we will be known forever by the tracks we leave...
. leader of bike to the moon team
co leader of aspire & inspire BSG January

snow leopards. febuary victorious valentines March bsg. dancing daffodills . April BSG Changing chicks

May beautiful blue bells







� ss linda.ellison1@btinternet. URL:www.sparkpeople.com/myspark/groups_
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MS2BTONED's Photo MS2BTONED Posts: 185
6/30/09 4:10 P

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I don't know about you, but I am so tired of apologizing for things that I have or do or don't do because of a BI I did not ask for. Why should we keep saying I am sorry because I stutter or forget or shake when we try to write something down or sign for something. We have lost or changed so many things about ourselves because of our journeys down this road I think it's time we take up for ourselves. I think just for today I am not going to utter the words "I am sorry" for something I can not help. Life is too short. (Now if I can only get over this feeling of having to explain myself every time I do or say something totally off the wall). How about it SP, anyone feel the same?
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AT49THISIS4ME's Photo AT49THISIS4ME Posts: 4,967
6/30/09 11:02 A

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i do`nt know about the US but here in England people who do`nt know me always talk to my husband or my friends or whoever is pushing me at the time it gets so annoying emoticon we call it the do`s she take sugar? syndrome it is as if if you are in a chair you can`nt hear anything or speak for yourself, i am sorry it is my pet hate.


my name is linda
we will be known forever by the tracks we leave...
. leader of bike to the moon team
co leader of aspire & inspire BSG January

snow leopards. febuary victorious valentines March bsg. dancing daffodills . April BSG Changing chicks

May beautiful blue bells







� ss linda.ellison1@btinternet. URL:www.sparkpeople.com/myspark/groups_
individual.asp?gid=31050


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BARBGEO's Photo BARBGEO Posts: 784
6/30/09 9:48 A

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Hi Linda!
Welcome to the team! I love the last line in your tagline...about your chair being your transport but that you still have a voice! That is so great!

Hugs,
barb G

All the best,
Barb G


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AT49THISIS4ME's Photo AT49THISIS4ME Posts: 4,967
6/29/09 4:54 P

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hi. i am linda i am from england i had an accident 25 years ago wich caused a blood clot on my brain. it was removed but to this day i still can`nt walk unaided , i need a wheelchair out doors and my left arm/hand is very weak


my name is linda
we will be known forever by the tracks we leave...
. leader of bike to the moon team
co leader of aspire & inspire BSG January

snow leopards. febuary victorious valentines March bsg. dancing daffodills . April BSG Changing chicks

May beautiful blue bells







� ss linda.ellison1@btinternet. URL:www.sparkpeople.com/myspark/groups_
individual.asp?gid=31050


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