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  • A  blog is a personal journal of your daily life as a stroke survivor or stroke caregiver.  Surprisingly, countless members have called it therapeautic to write down their thoughts and to vent their frustrations.  You can make it private, just for your eyes or public and share your personal thoughts with your friends.  Why not try it, create your blog and start writing and see if it helps you.  

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  • swilkinson

    Living on angel time.

    By swilkinson

    I went to see the neurosurgeon on Tuesday. I was interviewed by a young Asian associate doctor and sent for a 3D MRI and angiogram, a brand new way of showing  the blood supply within the brain. The results were given to me by the associate and then I saw the specialist. It appears the aneurysm is larger and deeper than previously thought but at my age they are not going to operate as it would mean a full brain surgery. Coiling, one method of dealing with an aneurysm, is not an option. I think I was a little bit shocked by the news but taking into consideration I have had the melanoma op, the lymph node dissection etc I am not really a good candidate for another operation, especially brain surgery.   The specialist was fairly brutal because I think  he wanted me to know if I wanted an operation it had to be after I got a clearance from the melanoma specialist and that would take time. He said he knew I had a long wait ahead of me but not to worry.  Not to worry!!! So back to basics, no stress, no strenuous exercise, no * blush, sounds like no fun at all. So what can I do? As usual make some decisions, live a quiet life, let the future take care of itself, one day at a time. Hell's bells, what else is new?   So I have a plan. I have to just go on the way I always have, going about my usual routine one day at a time. Whenever I start to worry I will visualise that little bubble about the same size as the tiny diamond on my engagement ring. I will visualise a tiny angel sitting alongside the aneurysm, with her thumb firmly on top of it holding it in place. I know one day it may be that she will take her thumb off and the pressure will build up and life as I know is it will be no more. But It will happen to us all one day, in one form or another.   I went to Dissection Clinic down in Sydney today and there have been no changes in the past three months to the Lymphoedema, which is good news. In the interview I told her I had regained my confidence in walking down stairs which had taken a year to do and had recently started yoga again. She seemed pleased with the progress. No more interviews in any of the Sydney specialists rooms until next February. Hurray! I have survived twelve months since the melanoma was removed and six months since the operation to remove the lymph nodes. I have a lot to be thankful for.   My daughter took me to both appointments, I was so glad she had the time. We stopped for lunch today before we left Sydney and although it was expensive it was a happy time and one we rarely enjoy together. She also got the news today that the position she holds as Captain of the Cardiff Corps has been extended for another twelve months which is good news for me. If she had been moved it might have been a lot further away. Her husband's appointment has also been extended. Though he will now have a wider area to cover, which means a lot more time on the road. But she said he can cope with that.   On a less happy note my special friend who has the leukemia has now been in hospital for eight weeks and he now seems to be getting much weaker. I have been a regular visitor and it is painful to see the deterioration. With all the people  I  have ministered to in hospital you would think I would get used to seeing that happen but I never do. I am always an optimist, thinking with the right treatment, an adjustment to their medication etc they will be fine. But that is not always the case. So maybe there is more bad news to come.   There are signs of Spring now, birds building nests, green grass after a little rain, even some blossoms on the prunus trees in the parks we passed today. Hopefully the nights will warm up and we can start packing away the winter clothes. I have no plans, the future is a blank canvas. Don't think there is much fun and excitement ahead but who can tell? If I wake up breathing and moderately energetic I will endeavour to have a good day.    
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Music and Life

I can't say how many times in my life, I have used music, more specifically women singers and their songs to pump me up and gather my inner forces to do what was necessary. Ever since I was a teen, I have used this method to cope. As a teen it was to break it off with someone who no longer held the important place in my life. I can't say I thought everything out all the way or that I had an end result that wasn't selfish or self centered or even where I would never be considered an existialist(sp??)Yup in those days of Pat Benatar, Stevie Nicks and The Go's Go's, I was young, invincible and immortal, I was a young woman that knew what I wanted and all I needed was some music to convince me that I could fufill the role I was about to play, and go get what I wanted. My own personal Flashdance or Footloose.   That was then...... I sit here and wonder, who pumps me up now? Because now in the decade of my forties, middle age and a survivor, I need to be strong, I need to plan what I want, I need to go get what I want. But it is harder now, I have a more complicated course I have to follow, there are others I need to think of, it isn't just me anymore.With age comes baggage.Baggage in terms of kids, pets and things. I'm like the woman who goes on vacation and has packed to much stuff I'll never need or wear. I need to stop and streamline, get organized. Well, I'm happy to report, Pat Benatar still does it. "Hit me with your best shot", although that song is easy to say but not as easy to stand there and take anyones best shot. Because now thoughts have crept in and question my actions, is it worth it to stay and take the best shots anymore? What's in it for me? It is better as a teen to just stand alone , strong in my convictions, defiant and not think of the consequences? I think so. I need to get back to Daily Zen.com and read some more.

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First Day of 2005

Not the best of days, definate depression - hate these mood swings. I also find them difficult to talk to anyone about, I only want to say I'm doing well, but some days I just want to hide away. I see my physician on 7th January, I plan to tell him about the depression.   This is too hard tonight... I'll try again tomorrow. My problems I know are minor in comparison with what tha people of S.E. Asia are going through - seems like there is no end to that horrors.    

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Testing private entry

FRIDAY: 7th January 2005   Today is my first private entry. I have been feeling quite good this week.   Challenges:   Creating sheets of labels in M.S. Word. Used to do this all the time. Ended up opening Access file and sending to M.S. Word. - it worked but I know there is a simple wayin M.S. Word.   I will close this now and add to it later.   Forgot lunch time meds AGAIN. Need to get some sort of reminder for this lunchtime tab maybe an alarm watch to go off at 1pm. seem like I rember the other two medication times, i.e. morning and bedtime, but constant forgetfullness with the 1pm.   I did a few hours work yesterday, Cynthia said to me "you have no idea how lucky you are" My employers and workmates at the time of my stroke were Cynthia, CEO and Libby, DON, Beleura Private Hospital. Having my stroke whilst away in Queensland made it difficult, my husband got me back to Victoria after 2 or 3 weeks in a Brisbane hospital, a bed was available in Beleura where I stayed for a few weeks (I have no recall of this period), I was then placed in a Rehab Unit for another 6 weeks. Sometime during the Rehab Unit stay is when I became consciouse of what was going on!   Dr Prakash Nayagam, who had previously treated me for a TIA took on my case, I am extremely grateful for that, I have so much trust in his treatment, ever though I didn't listen to his warning about the TIA. I see him next week for a checkup. He too is amazed in my recovery.   SATURDAY 15-01-05   Tony at Work - just want to go back to bed this morning- Not exactly depression but lonely.   Sometimes i can't believe i am alive and well enough to talk about it!! many, as we all know, are not. ( alive or well enough) best wishes to you and let's hope that we ALL use our "second chance" to the fullest!!!    

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Drafts

Still not 100% sure about BLOGS, what happened to the 2 drafts I mailed! maybe they will show up.   I want to write so much of what is going on in my life, but still have problems writing about what is important. Maybe I should list what I feel are important aspects of my life.   - Family - Stroke Recovery - Happiness   That's not much of a list but if I break down each point there is so much to work on.   Stroke Recovery, I have come so far have puts heaps of work into recovery and also had lots of help. But I'm tired of it now, that scares me a little because I still need to keep on trying to improve.   Family, where would I be without them, especially my husband. Three years to his retirement and we can't wait. It has been very difficult for him, our problem is because he feels he has to work so many hours we do not see enough of each other. We don't get to very much together at all. This will change and I just have to understand that.   This is my BLOG for today.   Maybe I just need to keep it simple and write a little each day.      

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Who Let the Dogs Out???

Well ever since I read Jean's blog, that song has been rattling around in my head today. So I guess it could mean the thoughts I've been thinking today. Yes, I put the words thoughts I've together, at times I do have real intelligent thoughts. Sometimes they might even make sense to everyone. I say this because of when I first stroked the posse of inlaws suddenly treated me as if I had not only a stroke but had become retarded too. I hated the feeling that gave me, so I quite happily now rub it in every chance I get that Hey! I'm not stupid, I'm not retarded, I just sustained brain damage! Besides the spouse is blond. Theres a reason that there are so many blond jokes out there. Besides if that man had an original thought of his own, it would be lonely. He has me convinced that every neuron he was born with went into the growth of facial hair. Anyway I was chattering about thoughts. I read a post from a newbie who was scared this morning. That got me thinking and I realized that I have gotten to the point that I am bored with this whole stroke event. I'm not overwhelmed by it and it doesn't scare me anymore and I got another Milky Way today too. Getting the milky way is fast becoming commonplace, nothing to get excited over, I don't even put the step stool back in the bathroom anymore, it has a new place tucked next to the fridge. It is funny how one day a new skill is something to get excited over and a few days later it becomes no big deal. That is how all of my recovery has been. The excitement is shortlived to be replaced with getting on with it all and not looking back. I can remember when I was scared, when I had a million unanswered questions. That seems like ages ago.( Who let the dogs out? Who? who? Who? who? who?) See? I even need to write the words out? Does this mean I'm becoming obsessed and focused on details? Gee, that would be a new thing and might even be helpful to my life now. Pam

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Close to home now.

The days and weeks after the stroke went by so slowly. At least Vinny was close to home now. I had spent a week at my in laws in Manhatten with my father in law, while my mother in law stayed at our house with our kids. My God, did I miss them. My heart broke for them. Not only was their Dad in the hospital, but now their Mom was not there too. I spoke to them so many times a day, but it was not the same. I longed for them to be with me, with us. But I could not put them through that. The day finally came when it was time to bring the kids up to see their Dad. The hospital/rehab is close to home. I brought Vinny in on a Thursday evening via ambulance (3 hours on the LIE in rush hour traffic, and that was in the HOV lane ). That Saturday was the big day. I never told our kids that he had memory problems. Most of the time in the stroke unit he didn't remember them. His memory did come back enough that he did remember them, but had trouble with their names. Well, there I was at the hospital, going through the front doors when all of a sudden, the fire alarm sounds. The hospital is now in lock down. I can't get up there. Is he on the floor with the fire? Can they get everyone out in time?? I went into a total tizzy. 45 minutes and a panic attack later we were let up to the patient floors.( I'd like to smack the idiot who can't make microwave popcorn in the microwave!!!!)   I run in his room, he's ok, but I need oxygen. I tell him I'll be back in 30 minutes with the kids. He's so excited, like a little kid on Christmas morning. Back down the elevator, run across the parking lot and zoom home. Get in, shut up, and hold on!!!! Off we go. It was a beautiful site to see. He's crying, their crying, I'm hysterical. The day went well after all.

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Time

Where does the time go? Why is it, that I started this journal of mine and never have time to write? Sure, I pop on every so often to read the new posts, but never have time to read as much as I want, or write anything. I think it's time to make some time for myself. I love to say that!! I know I'll never do it, but I love to say it! I'll do it when the time is right. Now is just not the time.

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I went for a visit

Today, I went for a visit. 3pm. It took me till 3pm and lots of cussing to go and visit. I watched a Carol Burnett movie about AA, slam down the remote and storm out the door. I sit in the parking lot and smoked a cigarette. The greeter at the door suggested, due to a highly contagious rash spreading through the nursing home, I should come back January 19th. An out. I'm not turning back. I go to her room and the bed empty (except maybe behind the curtain, I sense there is a person, but I know Rita has the bed closest to the door). Physical therapy they say...down the hall, make a right, last door on the right. MANY wheelchairs with MANY gray haired occupants. I greet them all....hello...how are you...hello...zig....zag. I stand in the doorway with my balky navy blue wool coat and pocketbook and look at her profile. The blond color is growning out along with her hair. 'Canary croche' blonde was her color she said. Now it has an auburn color and much more flattering growing out, without the makeup. When I see her, I want to wash her hair and blowdry. I don't even do my own hair, why do I want to do hers?? Her eye(s) is brighter, alert, watching all in the room. The room is half the size of my living room with 15 people....staff, patients, stove?, tables, chairs. I finally drop my pocketbook behind her wheelchair and curl my coat under my knees as I squat on her left side and mental kick myself for the 'left side' mistake. Vision good on the right, but she turns her head past center and we look into each others eyes. No words. So instantly aware of each other. So connected as we've always been. Hey. Hey. Whatcha doin'. Color pegs on a grid to match the picture. It's correct, and I change the picture...helping? She puts the orignal picture back and waits. I check out the company. I'm surprised that the age has dropped dramatically from the hallway. My age. A little younger. Do you think we, the non-stroke survivors have a hard time with this because we see ourselves in this position? Fear? And if we think the fear, can you imagine living the fear?? She is a very good 'student', following directions. So unlike her...this 'go along, get along', good student mentality. I wonder, does she think this is a test, and if she does well, they will let her go home. I know this is what she is thinking!! How unlike her! I always expect a 'frigg you', but since this stroke, it's been 'is this good enough, can I go home now??'. I just know this is what she is thinking. I'm charged with taking her back to her room, manuver her, road block, waiting...hello, thank you....and I see Denis, her....boyfriend? Is that what you call them when you are in your forties?? Sounds juvenile. We make eye contact and I'm thankful and happy to see him. Back in the room he shares the joy of a first step made, by herself, earlier in the day and it's so intimate between the two of them, his hand on her shoulder and her cheek stroking the back of his hand...the kissing and tears. He reinforces with her they are tears of joy...joy...joy. Her son is getting married earlier then expected and she will be going home in March. Her son's wife will be taking care of her full time. Does she know what she is getting into with all this??....I knew they were getting married early. They stopped by to see me two days before at work and showed me the marriage license they applied for. We hug....I hug her and whisper in her ear congratulations, softy and gently and she whispers back thank you....we both know. Denis leaves before dinner and Rita and I watch 'oprah'....so unlike us...lol. Dinner is served and the staff and I talk about sneaking in wine late night, would Rita be interested....no...good patient. Her roommate appears from behind the curtain, dinner smells and she wants to be rid of the brocalli and meatloaf. She hands it to me. I work with the staff to scrap off the offending meat and veggies and get her settled in. Rita is engrossed in her meal and I find it's time for me to leave. I kiss her forehead and have this urge to wash her hair....be back soon.

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A journey of 1000 miles begins with a single step

Hi there. This is the first in a long series of entries detialing my journey.   To begin with, I will fill you all in on my history to this point.   At approximately 5:00pm on Friday, Novemver 19, 2004, I suffered a stroke while driving back from Toledo, OH to our home in Monroe, Mi. My wife and I were in separate cars as we had just picked up her car from the Buick Dealership in Toldeo from being serviced. We had gone to Sam's Club to fill up both cars and pick up a few items and to purchase my new HP Ipaq.   It had taken them forever to find one and I was fast approaching when I was supposed to leave for work. You see, the plant where I work was in a planned maintenance shutdown and I was working nights. I was working 12 hours per night plus 1 hour for turnover to the next shift.   Normally, my job function is to supervise and provide support to contractors perform diagnostic testing of these items we have called motor operated valves. I have approximately 15 years experience doing this and I have more experience with the new diagnostic equipment we had introduced than anyone else where I work.   This outage was different in that I was also to provide night shift coverage for air operated valve diagnostic testing. I had been trained and the "succession path" set out by those in our management was to have me become the air operated valve engineer at the next planned shutdown.   Needless to say, I was under quite a bit of stress but it was not an undue amount considering we were in a outage.   Where were we..... Oh yeah. I had already worked 65 hours that week and was on track to work 91 hours when this happened.   Now back to the stroke. I was driving back home at a little over 70 mph and suddenly, the left side of my body went numb. The affected areas included my face arm and leg. My left arm suddenly felt like it weighed 500 lbs and it was difficult to move.   Somehow I was able to drive home safely although I am not sure how I did it. I went inside and told my wife that something was very wrong with me and I needed to go to the Emergency Room. She replied that, "I had an awful feeling that something had happened to you."   We get to the emergency room at about 5:30pm and they take me back. There are wall to wall patients and I am stuck in one of the corrodors until a spot opened up. The nurse attempts to place an IV into my left hand and my hand erupts like a volcano because they botched the job. I am having a hard time walking because my balance is gone as a result of the stroke.   They did an X-Ray which was much fun considering I had to stand up for the X-Ray.   A bed finally opens up and I get out of the hallway. The doctor comes up and does the usual checks. "Grab both of my hands and squeeze them" he says. I respond as asked and he says, "You know your left side is not as strong as the right." DUH!!!!!!!!!!!!!!!!, I thought. You have got to love these doctors. Don't they have a clue. More about that later.   The physician in the ER make a comment that my blood pressure seemed quite high (high 150's low 160's / mid - high 90's). Now consider this. If you are in the emergency room and something is happening to you, isn't your BP SUPPOSED to be higher???? I mean, inquiring minds do want to know!!!!!!!!!!!!!   I was admitted to the hospital for more tests. They said what had happened to me could range from a "complicated migraine" to a "full blown TIA". They did so much blood work that I was wondering whether I had any left.   This gets us to Saturday. The numbness I was experiencing the previous day is subsiding. "You are having a Cat Scan sir.", I was told. "I had one of those last night.", I reply.   "This one is with contrast added." they tell me. Seems like they would have gotten that one before but one must remember that doctors PRACTICE Medicine. Yeah, they keep practicing until they get it right.   They also decided to do the MRI today as well. I have read in my research online is that an MRI is the most accurate means to determine whether a stroke has actually occurred. It would only make sense that you would used your most accurate means AS SOON AFTER THE STROKE HAD HAPPENED. The little voice is saying in my ear, "But remember that doctors PRACTICE Medicine." We talked about that earlier didn't we. They did a regular Echocardiogram today. Found I did have a heart (good thing) but found no abnormalities (also good thing).   This gets us to Sunday. I am not experiencing any of the symptoms from Friday night anymore (Yeah). I am stuck in a hospital bed (Boo). The neurologist on call comes in and says he reviewed the Cat Scans (both of them) and MRI and didn't find anything. He tells me that I was suffering from what can basically be described as a "Migraine from Hell". I was told to have a follow up appointment with my neurologist (Thank God, I have one.) More on that later.   I have definately bored you all with the adventures on a weekend not too long ago.   There will be more entries to document the rest of this journey.     Charles Ramsey

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SOME THINGS WEREN'T MEANT TO BE...

There are just some things that weren't meant to be. I get on a roll that is fed by success of accomplishing one thing, I get all heady and cocky and think I can now rule the world. I decided to cook tonight. My choice was Shrimp Fetticini.But it would be helpful if I had the ALL the right ingredients. I didn't, but I cheated--- thank god for Bistro on the Go! Throw that baby in the microwave and within 10 minutes the kitchen smells as if I've been slaving there all day. OK, one obstacle overcome. My 7 year old daughter wants to dance, she learned how to do the Macarina last saturday. I think of my success on the step stool this afternoon. I quickly run threw the steps of the Macarina in my head, no problem, I can do anything today. We start facing each other. I put my good arm straight out in front of me palm side up. Our heads are bopping to the music. I try to put my left arm out palm down, but gravity is against me. Alex jumps over to help me, it is time to put the left hand palm up, she twists my arm towards me. I'm suddenly yelling louder then the music because my arm doesn't twist that way. She stays by me and helps move the left arm in each position, now it is time to shake the hips and jump around to face a new direction. I get shaking my hips, we're smiling at each other, she's happy I'm doing something I used to do pre stroke with her. I'm shaking my hips and before I know what is happening, my left leg feels left out and joins in the shaking and my balence is shot. I'm suddenly on my knees. Yup, I shook the house, I probably have a reading on a richter scale somewhere. I learned something today though--- I still can't dance. Pam

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Unable to deal

Would you be angry that I'm selfish? I take all that she has been through and digest and swirl internally and then what do I do??...shut down, don't deal. How common is this? I was by her side every evening in intensive care...visited once when she was in acute rehab and have yet to visit her at the nursing home. Surely she knows...surely she is disappointed (as is my family) in that I've not visited her.   Thank you Vicki for chatting with me in the Lobby of the chat rooms. I've been on-line on and off getting more information off the websites. The idea of a guest book and the three ring binders to organize her paperwork were the best.   Rita, my best friend...had a stroke on November 12th....at the age of 48. You know what is so irritating??...I haven't a clue what is involved with strokes. Ask me about heart disease??...I'm an expert. A photographer I once worked for had a stroke and I saw his partner in business/wife in the grocery store one day and she told me about his stroke. She look different....scared...disoriented...resigned? Not the same energy level as when I worked there. That was my whole experience with strokes prior to November 12th. When I visit Rita, we do this stupid 'chatter' for about 10 minutes...I can't stand it, it's so 'fake'. I check out her bed, the cards on the wall, watch tv, ask about therapy, and then we both start crying.   Molly is cool though. She bought a Scrabble game and they both played late one Friday evening. I'm jealous that she can go on with this and not be so emotional. Today, Chris and his girlfriend are taking a Johnny Depp movie to watch today. (This is so unlike me to not get involved!)   My sister is disappointed in me. Knowing what good friends were are, that I've not become involved more in this event in Rita's life. Why is it so much about me?? This sucks

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Look what I did for chocolate!

I am 40 now and have discovered the merits of eating chocolate. I may be a late bloomer just finding this out, but I can claim brain damage, and the fact that I am now in menopause and have put the "P" in PMS. But it is simply amazing what I will now do for a Milky Way bar.   The spouse buys Milky Ways in bulk now, because both kids and I love them. I don't need them, but a treat is nice every once in awhile. They reside on top of the fridge. Now when one has stroked and has a balence issue, climbing on anything is out of the question, at least it has for me for the last three years. That being said, I got my daughters little step stool today, put it in front of the fridge, and stood there deciding if I could do this or not. But those damn milky ways have been chattering to me for days! I thought,"I'll just go really really slow." So I came to terms with trying to get myself a milky way. Of course the thought of biting into the carmel nugget covered in blissful chocolate was a huge motivator.   I took a deep breath and lifted my right leg and placed it on the step stool. I grabbed the top of the fridge and stepped on the stool. I got lightheaded and saw stars and blinking lights, my heart was pumping like I had just had a grueling cardio workout. I caught my breath, steadied myself and put my left foot on the stool with my right. I stayed perfectly still, I was afraid to move. I slowly lifted my right hand from the death grip of the fridge and slowly reached up. hoping my aim was good for the box of milky ways. Now I am short, not quite 5'2 and I'm sure I resembled that little guy who looks over fences and all you see is a big nose and eyes. I can't think of his name.I never took my eyes off of my target and I started talking to myself. Outloud. You can do this, steady........ Almost there.....I felt my fingers grab the candy bar out of the box, I almost forgot to move slow as I was teetering on the stool as it was. I grabbed the top of the fridge, with a few fingers and leaned my forehead on the fridge and closed my eyes. I was dizzy, I slowly very stiffly stepped off the stool. I was standing upright on the floor holding a Milky Way in my right hand. I was also grinning from ear to ear because of two things. I had overcome an obstacle that the stroke had given me and I had sucessfully gotten a candy bar myself. I was secretly delighted that I had stepped on something to reach something high. Now if I only had a shot of Backslides today, what a day it would have been. I now understand the lengths I will go to for chocolate. Yummmmm, it was worth it, Hammering heart and all. Pam

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NeverQuit

Three years ago on Tuesday, I lost my brother. Well, I didn't really lose him.   I know exactly where his ashes are, and his eyes now belong to a grandma, and his skin is still walking around on a burn victim. He couldn't give away most of his physical body. David had epilepsy and therefore, he was on a lot of drugs.   David was a stand up comedian. He opened for everyone from The Temptations to Adam Sandler. He had been on Comedy Central's Comics Come Home three times (or was it four?), and he was named the funniest man in Wisconsin twice, (or was it three times?). If you are ever near an art house theater - his first, last, and only movie is called "Making Revolution" - and it's worth the price of a ticket.   NeverQuit Comedy Productions was David's production company. He brokered comedians in his spare time. Especially rising comedians. David's logo - a comic of his face- is what you see when you see my name on the board.   That was David's motto, NeverQuit. David and his close friend, a guy named Chris Farley, were supposed to head for New York together. That's when David had his first seizure. Chris went on to Saturday Night Live and David went on living, ...with epilepsy.   Chris died from an overdose of illegal drugs. Sometimes, I wonder if Dave died from an underdose of legal drugs.   They are buried in the same cemetary.   I miss my little brother.   His autograph is framed on a poster on my wall. The poster was signed by Victoria Jackson, George Wendt, Jim Breuer, Dave Chappelle, Wanda Sykes, Tim Meadows, Kevin Bozeman, Bob Saget and so many others.   And the only signature that matters is David's.   He signed the poster "NeverQuit".   And in my darkest hour, I'll NeverQuit.   I'll think about David on Tuesday. Not a day goes by when I don't think about him.   And I'll smile. He'd want me to.

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I'm a big push over

So I quit my job - didn't do me much good. Now, I'm only working 8 hours a day! The joys of a family owned business. It's Saturday and I should be watching soap opera reruns on Soapnet and doing laundry. Relaxing, so to speak. Instead, at 6 am I was on the computer creating 108 tent cards for my neighbor Sandra's dinner-dance tonight. (That I couldn't attend if I wanted to, I do well if I'm walking straight - I can't imagine waltzing backwards!) I have got to finish the case study for Strokenet, it's the only thing on my plate that's fun and for me. I'm redesigning a brochure on donor recognition for work that has to go to the printer on Monday. I haven't sent out Jerry's bills in two weeks, (he's an upholsterer and works for three furniture stores independantly) - so those have to be done, if we want to eat next month. I also have to update the company's 10 year old business plan, that's been sitting in my briefcase for 5 days. Throw in a trip to the grocery store, cleaning the house, and doing the laundry, and I've got a busy weekend. My plate should be full! BUT I'm a push over - so when a friend asks for help - I'm there. Sheila -who's specialty in the kitchen is making reservations, is having company for dinner. Important company. And I've suddenly been promoted from girlfriend to BEST friend in the world. All because I make a 1/2 way decent Lasagna. So, I'm going to make Lasagna from scratch - I'm going to cheat and buy the noodles, instead of making them by hand! I guess it's true ... "if you want something done ask a busy woman!" But as I see it - "if you really want something done- ask a big pushover!"                      

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my mind's a spining

flood gates of things going on,got my new windows horray!! my ex boss calls me up out of the blue& said their pulling out of our old 401k program"coast to much to matain",,so i got to roll it over to a i.r.a.,wich got me thinking about WHAT i'm i gonna do? with working& stuff? my mind fine,i can get around& stuffcan't imagan collecting for 30 yearsintill i'm 62 witch is 30 years awaywhat to do?thats a nother life time,have to find out is it aganst som kind of law to have a ira if your collecting?,seems like to whole system is geared to get you off the pay roll.if i could get a job ansering the phone for a up& coming co.,like my freinds kid did,it was fun middle aged couple ex hippyshe's a carptershe had had crappy jobs all her life between kids 2(both bad asses) she smartens up(girl child,after getting pregnet& in jail) the state got her a job,durring the follow ups she lands a HIGH double income as a company operator!! she makes more than both parents,we all laughwe worked hard all our lifes trying to do the right thing& were still stuggling the kid go to crime drug dealing,holdups(including banks!!& she (the kid) lands on her feet .any way where can i find a job like that?!,i'd be happy to get off the dole,if i could really saport my self,i've always worked even as a child(selling fire works) goofy gov. jobs,as a teenager(like i've said be fore bands cost money!!,as a freind once said if i had all the money i've spent on this band stuff;ie; rehersal space,touring(food/gas).equitment up keep i could buy a plane!! a small plane,but a plane never the less well stuff to do advise to seek,it never ends!

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Good to be Home

Well, I survived Florida. It was wonderful to see the parents but painful to witness the aging. Here, I was anxious about not being able to take them and do for them, and they have definitely slowed down themselves. Getting away from one's routine is good for the soul. I had time to examine really what's going on with me and I've come to the conclusion, that I still have not accepted having a stroke. Everyday I'm *beep* that my left side is weak and feeling weird. I'm expecting to wake up and it be gone...a bad dream. I don't know if I'll ever be able to accept this.

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Living here

There are days I want to run away. Today is one of them. Since we have been here helping my parents, every thing seems ok on the outside. But deep down inside, I think we made a big mistake. Jay got a job at Home Depot and he is dealing with it ok. I know he isn't happy about it and I wish I was the one working. I need to work. I am going absolutely stir crazy. Last night my dad was drunk and he told my mom he hated what we were doing to them. That we only wanted their money. Man, that hurt. I could care less about their money. I don't want anything to do with it. I am here to help in whatever way I can. I don't even know if he remembers saying it or not and right now I don't care. Unfortunately, if I say anything, my mom will suffer, not him. I can't do that to my mom. I love her too much. I am so confused and I don't know what to do now. And as far as what we are doing to them, what about what he did to us? We gave up everything to come here. We had a house, jobs we loved, and a life. Now we don't have any of that. I am so mad. The more I think about it, the madder I get. I better go now.

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Rewriting for Idiot Computers

For many years I wrote letters and stories and they were disappeared. I don't know where they went, I was simply writing as I used to in a typewriter. Now I have learned how to write again on a computer and I am no longer an idiot.   January 10, 2005 - 7:25 p.m.   What is an idiot on computers? Whether you are a stroke/aphasiac, or a caregiver, or a "normal" person the best answer is about to paste messages, I get angry when I am writing to post a message and it disappears, even trying to undo on the Edit.   Best thing I have learned recently is that to write the message on Word on one of my drives and put it on a folder, which I call "Letters", and save it with a file name. Then, when I want to post the letter or an entry in my journal, I paste it in the new posting. It's like an old writer who changed the manuscript on an old typewriter who throw out the pages and rewrite.   Nice thing about computers is that you can change the messages. I am much happy about that. I can write stupid thing and can rewrite it on a computer. Better than loosing what I was writing and forgot what I was writing on my computer.   Bil    

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happy monday

horray!,, finished putting my food away spent way too much,but i'm good for the month & that was the plan in the onset,i got my self a stewing pot YAY!!,now i can make stews yum.... lamb stew oh....boy!!,i finally get my new widows to morrow,the've been saying that since i moved here it's finally gonna happen,hope they don't make a mess

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Angels in Dentists

January 10, 2005   Yesterday was my birthday and it was terrible. I usually do something special like going to a good restaurant or go to see movies, but yesterday I stayed home. The problem was my pain on the gums.   Last Tuesday, I had to visit a periodonist in New Jersey, to check my gums and teeth as the expensive dentists told me to do in Long Island. I emailed 3 periodontists, and just one answered, his name Marc Gordon in Lakewood, N.J. I had emailed him that I live off from SSI Disability and have no other insurance, just from the Veterans.   I was in his office for one hour to check my gums and teeth and it was wonderful. There was a woman, an aide who works with him, and she stayed with me all the time. Dr. Gordon told me exactly what my problem is and he can help me. He understand what my problems are, besides gums and money, so I was happy, very happy that I just had to pay $85 for the first visit.   Of course, I have to see him again to take out the pockets in my gums. He also said, that I had a tooth which has to be taking out and he doesn't do that, so he told me to visit an oral surgeon. I have always hated dentists - think of the noise things they use and the pain. But again, I was in this oral surgeon office for an hour and again the aide was always with me. Nicest thing was there was no pain when he took out the tooth.   Sadly, I had to take penicillin and Tylenol Codein for the pain. It was funny, at the end where I had to pay the bill, I told a woman that now I am getting a LOT pain to pay the bill. Best thing was that it was just $186, which I thought it should be higher.   Is it possible that some doctors really believe that they are helping people? I know they need money to keep the office to pay salaries and rentals, but let me tell you, I was very happy what they did.   There are angels in dentists and doctors.   Bil  

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Surprise by Design

Today at 10a.m. the heating system guy was here. My head is swirling with facts of Propane vs. fuel oil. Not only that I also have to remember it is a small tiny little space I am working with. I have it in my head how I want the layout to be, the other half has his vision. These visions are not one and the same, not even close. I am trying to design it with my living in it alone, disabled, he is designing it with the speed of a slow day at a McDonald's drive thru in mind. He wants to get it done, finished as quickly as he can. Which I think is wonderful, the sooner we are apart, the better it will be, but I'm not giving up certion things I need.

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Thoughts on the day after a party

No wonder I want a divorce! It amazes me everytime the point is driven home, that I actually at one time stood in a chapel, knees shaking, heart pounding from excitement that I was about to marry this man I now can't wait to shed. It is hard to hold on to newfound understandings of my feelings. I am different now, true the stroke changed me. But I feel that every time I have a lightbulb moment where the light shines into the dark recesses of my mind and I see something for how it is now. I need to defend that newfound knowledge from the sarcasm and ignorance of the complete moron I am married to. The bikers I had a shot with last night, were sniff sniff "white trash". Well they may not be my next choice to have over for Sunday dinner or even a backyard BBQ next summer. But they were fine to have a conversation and a shot with at the bar. I'm so tired of judgements and labels. I'm tired of it being stated as fact that I have no judgement at all. I have judgement, it just doesn't shine a good light on the spouse. I can't say how many times I've secretly chuckled to myself as I shed each and every social restriction one by one. I've peeled them off like an article of clothing and quite gleefully tossed them aside like smelly socks. That is the survivors secret journey, almost like my very own coming of age story. It is comforting to be finding myself again. I kinda like this person who is me. Pam

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The Morning after a Party

Well if you judge what my entry will based n the title.... No, I did not have a different partner in my bed this morning. And no, I did not have a hangover. Although the second could have easily been the reason. I did try a new shot last night called a "backslide", I only had one shot as it was potent stuff.But it tasted good and didn't cause me to shiver or grimace on its way down my throat. I can remember doing pitchers of Alabama Slammers and every shot I swallowed made me shiver. Backslides are a dangerous thing for me to think are tasty. I watched them being made and I've committed the recipe to memory I think. Considering who was at the bar doing these shots and the lifestyle they lead, getting into the habit of participating and keeping up with them wouldn't be benificial to my health. I've always viewed the real deal Harley bikers as a tough crew to compete with. Even their women are tough. But they have the right attitude towards life, live it to the fullest and to hell with the rest. Well that is my cleaned up version of their outlook. I think I can say it was a nice walk on a different side of life last night. If my husband and I had been at this party together, it would be a safe bet that I never would have been out in the bar in the first place, talking with these people and drinking shots with them. But I was there alone,and able to do what I wanted. So these are my morning after a party thoughts. Maybe I am still trying to convince myself of something, I'm not sure. I do know that I like the charm of not being restricted to a social code anymore. It is so freeing to interact with people different then myself. To rid myself of the snobby social codes I've embraced over the past few decades. To just be myself, on a even ground with them and talk as one human to another. Thank god I had the stroke to have this second chance at life, to right the wrongs I adopted.I never knew what a snob I had become, I was no better then anyone else. Now, it is a better perspective to see others eye to eye. Pam

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