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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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  • HostSue

    Living on angel time.

    By HostSue

    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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day two

i guess this works alot better when you publish it snow bound today still waiting for the guitar,guess i won't freak yet,my dealer was having problems with some of the saplyers(no pick-ups on hand ) i'll just have to wait what to do today oh-hum

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day in a life

o.k. seemed to have figued out this blog deal fun!! just did a light scubdown of the place(home sweet home),it's snowing today so i'll stay in no reason to leave the house,took out the trash,HORRAY! for garbage shoots! got most of evry thing i needed to get done bills<check> rent<check> quit my local y stash money aside,just need to go food shoping for the human,cat has plenty of food maybe friday??sapose to clear up a little crossed the street yesterday with out my leg brace(big milestone!!)and didn't come close to being hit by a car or truck have to do that more when i rejoin my old y better equpiment& real staff,not just a bunch of long eared high shcool kids,i always thought a blog was something in the bottom of a moat??

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Fear of Florida

For the past 12 years, every winter my family would go to Florida to visit the parents and in-laws. As the years have progressed, our visits have become more important. Our parents are getting older and look so forward to our arrival. We go places they wouldn't go to and take care of things they have difficulty with. This year I'm different. I don't look different but my left side is numb and weak and I tire. I don't want them to worry and I also want to continue to do what I've always done. I'm feeling anxious and sad. I liked being the one to help and take care of them. I'm hoping I'll still be able to.

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Periodonist Day

January 5, 2005   I don't mind the rain. Actually, I love to sit in front of a window while I am on the computer to watch the rain and enjoy the sound. But today I do not need rain, especially when it is cold. I have an appointment for a periodonist at 1:45 and yesterday, I was trying all day to find how to get there. Sadly, there is no public transportation here in Manchester, New Jersey.   If I want to make my appointment, I have to take our village residence bus to the bus terminal and from there to take a bus close to the doctor's office. Unfortunately, I would have to take the village bus at 8:45, and then take a bus from Toms River Terminal at 9:51 to arrive in the Lakewood Bus Terminal at 10:49. From there, it's about a mile from the doctor's office.   Arriving in Lakewood, I would have to hang out for 3 hours, which is okay, because I love to walk. Thought I could visit the town, which is well known. But with the rain, I cannot do that. So I have to take a taxi and pay $25 for the one-way trip.   I had tried to find a closer periodonist where I live. I called one and the receptionist told me that, to just visit the office I had to pay $200, before the doctor could see me. And then of course, there will be at least another $200 for the x-rays and radiographs (whatever that is).   At least the periodonist who I am going to visit (I had emailed him last week about my gum problems and told him that I have no health insurance and that I live just simply from Social Security Disability, and he answered to call Monday to get an appointment and he will help me.) I called his office and I was surprised, just have to pay $95 for him to see me and check my gums and teeth. And of course, there will x-rays and other things.   A week ago I went to a dentist in Long Island and he said there was nothing he could do for me and told me I have to go a periodonist. Meanwhile, sitting there, he did clean my gums and teeth and filled three teeth on the gum, and I was shocked and angry to pay $280 for doing nothing. I left his office, hoping that at least the pain would leave, but no way.   So what can you do? At this moment, I will do ANYTHING or pay whatever just to take out the pain and the annoying. Some people think I should go to the Veterans Clinic in Brick, New Jersey. I did called, and the woman said, I could get an appointment in June. Told her, I cannot wait, the pain is terrible. She said I can go the clinic, but problem is that I have to wait and hope that they will have time to see me. And of course, they are not special dentists. What I had to do is take x-rays and then they will decide what to do. Ha, ha.   They will probably take the x-rays and they will send them to Newark's Veterans Hospital to decide. Yeah, right, like my glasses which I am waiting since August.   Bil        

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The stroke

September 15, 2004. Vinny was driving, he was all alone. He was walking back to his car when he had the most incredible pain in his head. He sat there for a while until the "headache" eased up a little. Then he started the car and started driving. Out of nowhere he couldn't move his entire right side, his vision was blurred, he was confused, and he saw a school bus stop full of kids. Thank God he still had enough of his thinking to pull over and hit a parked car. "it was either hit the car or kill kids". All of this took him 6-7 weeks to tell me. The first night they told me he wasn't going to make it. The bleed was really bad, large and very deep in his brain. He made it through the night. They still told me he wouldn't make it. He made it through night 2. After the 3rd night and he was a bit more stable, I was finally forced by our families to leave the hospital. 4 days in ICU, 5 days on the stroke unit, then the transfer to the Rehap hospital.He has no memory of those first 9 days. He remembers his mother getting to the ER. He couldn't speak, but he kept looking at the door with panic on his face. She understood, "Patti is on her way, she'll be here soon." As soon as I ran in there, I could see the fear,and the panic in his beautiful eyes. "I'm here Hon, I'm with you, it's going to be alright." He finally relaxed and drifted off. That is where his memory ends. Thats enough for now. I can't see through the tears.

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Using a telephone

This is the begging of my journal.   Couldn't sleep well last night because I was nervous that I had to make calls this morning. I never liked the telephone when I was healthy but now it's worse because I have problems to speak. I didn't know how I was going to wake up, will be a great actor remembering lines or will I be a baby talking learning how to say words.   Finally got the energy to make calls. First for New Jersey Health, trying to get information about Medicaid. Of course, I always start the conversation about my stroke and aphasia, "So please, speak slowly." At least I have been found that New Jersians are wonderful people when I tell them with my aphasia problem and they speak slow. The worse problem is when I have to take numbers -- they were nice and they weren't angry. Anyway, the woman told me that I am not able to use Medicaid because I get "too" much money on my SSID. Too rich getting $921 a month. Ha, ha.   Next call was to call a periodontist whom I had emailed last Thursday. I told him my story and that I have no health insurance at all. He emailed me and told me to call Monday to make an appointment and they will see what they can do for me. Could he be a Santa Claus?   Third call was to my Veterans Clinic, trying to get information if they do work with dentists, especially a periodonist. They were nice and put me on the dental line. Bad thing is that I had to leave a message and hopefully they will call me. Yeah, right. In August I went to check my eyes and they told me my glasses will be sent within 6 weeks. They didn't come. In November I called the Veterans Hospital and they made me to call the factory, oops, sorry the laboratory. They disconnected me several times and finally I got a woman and she told me that they don't have my prescription and I had to call another number. The woman there told me that there is some mistake, because they had send the prescription. At the end she said she was sorry and she is taking the prescription to the laboratory and the glasses will be done "immediately." What is immediately -- it's been 2 months and I still have not gotten my glasses.   Thinking that I am going to clinic to tell them to forget my prescription but I am sure that my eyes are getting worse and if I can get them, it will be a waste. Have to get a new prescription.   Oh Lordie, that's life.   Bil  

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day two -night too

It's 8:35 here, Ryan's taking a shower, the cat's already asleep in her basket, and I'm bracing for another long night. Why do the nights seem longer...darker...emptier... when you are alone? It wasn't like this before my stroke. I would have just been getting ready to go out and party with friends. .... Dinner at 9, movies at 10? or the bar scene at 10:30? Now, I wait for, and pray for the sleep, that doesn't come. Sleep comforts me because, I'm not expected to be ok when I'm sleeping. And for some reason I'm not allowed to be less than ok when I'm awake. I'm trying so hard to be the "old me" when it counts so much - that the "new me" hurts. Tomorrow, I'll drive, on ice, to take Ryan to the orthodonist, when I can't even drive on the highway yet. I'll get him to school and I'll go to work, and I'll smile, my now crooked smile. They'll never know I was up half the night or that I set the alarm at 4 am so, I'd be up at 6. They'll never know how scared I am, or how their "desertion" effects me. You'll know, but I trust you'll keep my secret, share my pain, and console me with your laughter. I'm counting on it daily, you know I need you more, especially at night, when I'm alone.

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January 2, 2005

Today was a wonderful day. I went into the city with my best friend to take my daughter for brunch for her 30th birthday. Everything was perfect...the day, the restaurant, the food, the people around us and I was able to enjoy every moment.  

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Optimistic New YEar

Today ends a five day break from work and while I dread going back to work every weekday, it will be good to get back in routine. My hubby who is the survivor has been doing very well during this holiday break. The two granddaughters that arrived this year sure help! John will be calling a stroke survivor in North Carolina who has been isolated we understand from her sister. We are excited at the possibility of helping someone. That seems to be what John enjoys most these days. I feel good about getting some things organized this weekend. We did a stroke camp in September and all the "stuff" from that event needed to be better organized and it's done! Will begin planning the 2005 event in about a month. Looking forward to a nice vacation in February, so for today, I don't have any real complaints or frustrations................of course when John wakes up from his nap, that can all change.

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Day one -alone

Well, I made it through the first night. Sleeping on the couch in the living room with the tv on. On top of all my anxiety last night we had an ice storm. So, I sleep closer to the front door which makes no sense at all. Only two more nights to go. The nights are the worst, I'm even starting to watch the late night infomercials. It seems you can buy nearly anything and get a second set free! I wonder how Jerry would like that...."dear, I know we didn't need "a scooping up batter and flipping eggs" utencil but, it was buy one, get one free! and they threw in a free pasta draining pizza cooker" lol

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pneumonia fatigue

i have been having rolling illnesses-colds etc since late november-culminating in this pneumonia over xmas-new year-my immune system is really low-trying vitamins and special yoghurts

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The New Year

Well I made it through my first New Year as a stroke victim. I'm still having a difficult time accepting that for no known reason a blood vessel collapsed in my brain causing my whole left side from head to toe to feel like it's sleeping and so heavy. From the outside no one would know there's anything wrong which in a way makes it even more difficult. I try to keep up with the pace but it becomes exhausting. I can't believe this is to be my daily battle. I know it could be so much worse but I do feel cheated. I'm 53 and at times feel like 95. I have a wonderful family and am positive around them but right now I'm wiped out and just feel like crying.

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Sleeping so much

He sleeps so much! I know he needs more rest than he did before but if I can't keep him entertained he goes back to bed. He got up at 11 today and its 330 and he is back in bed.   How much is too much.

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First entry

This is a great idea! I will post my first update on Blaine in a while. He came home from rehab (4months) just before Thanksgiving. He has been doing great. His speech is coming back and he is MUCH easier to manage. Don't know if it is the meds, or time, or therapy but the anger is gone. The throwing and hitting are gone.   This is a momentous improvement. Mainly because I can pay someone to look after him or have him attend an adult daycare while I work. My next goal for him is to have him stay home alone for a few hours. Not sure how I will know when he is ready. He has absolutely no short term memory so I am not sure how he will do. Will he forget where I am? Can he get help if he needs it?   I guess I'll know. I am thankful for all his acheivements. Yet I am still grieving the lost relationship. The holidays have been rough. Lynn

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Alone

I'm alone today and nervous - My parents are on the way to Orlando, my husband is headed for Vegas, my sister is in Rice Lake near Minnesota, my closest friend is visiting family in Detroit, even my daughter is over an hour away from me, at her apartment in Sun Prairie. I know it's totally irrational to be nervous. I'm 42 years old - it's not like I've never been alone before! But, who would I call if something happened? I feel every little ache or pain more intensely today because I'm almost frightened of what I use to consider my freedom. My independance is more of a curse than a gift today. I have the board and the chat room if I get lonely and that's a comfort of sorts. There's no one here but Ryan, and God knows I can't tell my 14 year old kid that his Mom is afraid. Afraid of being alone, afraid of having another stroke, afraid to even clean the damn bathroom because I might fall or hurt myself. It's crazy, no - I'm crazy to be this pathetic and needy. I told everyone I'd be fine on my own. Now it's just a matter of convincing myself.

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First time I saw mom after stroke

So here I was in a strange land. Ok I had never been there before. It wasn't strange, just new. Dad picked me up at the airport and we went to the house. I thought what a great house, but something was missing. It was mom. We dropped my bag, called my husband to let him know I was here, and off to the hospital we went.   I got an eyeopener. I had never seen my mom look so helpless. I had to choke back the tears. As I grabbed her hand for the first time, she had what the called a little seziure. Her nails actually cut into my hand! I was so scared. I started meeting her nurses and her doctors. I felt safe, but I still blamed the doctor. I watched for a week, as I fed my mom, that she understood what was happening. But I wasn't really certain that she did. She seemed so distance, that it was hard going to the hospital everyday.   After a week, I had to go home. Back to my husband and my job. I felt so helpless and alone. Sometimes I still feel that way.

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New Year - new me

I sound like I'm feeling sorry for myself... I'm really not. This year will be a lot different from last, h*ll I'm different from who I was last year. Last year at this time I was baking a spiral ham and making crab stuffed mushrooms for Connie's annual New Years Eve party. Connie was supposed to be my sister in law, until three years ago when my brother David died, she has since become one of my best friends. Connie's not having her party this year, she's in the process of getting a divorce, her husband of a year couldn't compete with the memories, and my stroke made Connie realize life is too short to settle for anything. My stroke changed things for a lot of people, I guess I should keep that in mind when I start to feel bad about how it's changed my life. So what, if I can't go out and party all night like I used to...who cares, if I'm watching the Rose Parade alone. It's still a new year, and the new me will face it on my terms. Stronger, wiser, a little bit differently abled but, none the less a survivor. I survived 2004 - 2005 better watch out, because this year I don't intend to survive, I intend to succeed. And it will be a much better year.

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Dealing with the stroke

Ok so now I had to get control of myself. My mom and I talked once a week every week for as long as I had been out of the house (about 10 years). She was my best friend. Needless to say, I was 1400 miles away and helpless. I couldn't lose my job by taking off too long. My dad said for me to wait and see what happened. I waited. I talked to my dad a few times a week for the next two months. This is saying a lot. My dad and I were not close at all! I dreaded the fact the he was my only communication with my mom. Mom started having small seziures in May of 2001. I finally told my dad I was coming out and he would just have to live with the fact.   First of all, I had never flown alone anywhere. My husband was my constant companion and I could do anything with him by my side. He couldn't get the time off of work to go with me, so I went alone. What a disaster. I flew TWA out of Phoenix to St. Louis. I had about 1 hour before catching the puddle jumper to Arkansas. Well, as TWA has a way of doing, I got to the terminal about 10 minutes prior to my connecting flight. The wonderful people at TWA told me the gate I needed to go to was clear on the other side of the terminal. Could they get someone to take me there? No. I ran through the airport crying with my cell phone in hand on the phone with my husband. Well, TWA was wrong. The gate I needed was two gates away from the one I came in on! So I found it and lucky for me it was a really small airlines that is now out of business. They had held the plane waiting for me. The gentleman told me where the smoking lounge was and he would come get me when it was time to leave. They gave me 5 minutes to get my breath before I got on the plane. I felt so save and secure on this little plane that you couldn't even hear yourself think because of the props, it was weird and wonderful in a way. So the plan was when I landed to take the only taxi in town to my parents house. Well, the taxi didn't run on Tuesday and it was Tuesday. My dad had found that out and came to pick me up.

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New year?

The husband Jerry, is flying to Las Vegas early tomorrow, he'll be gone for a few days to celebrate turning 50 with all his old college buddies. I'm kind of nervous because for the first time since my stroke I'll be all alone - granted my 14 year old son will be home and I'm sure he'll be "watching out for me", but it's not the same. On the 10th, it'll be six months since my stroke, do we celebrate the new year then? Oh to be sure I'm glad to be here to see 2005 roll in - 2004 was not the greatest by any means. . . but, I face the future with a little more anxiety, & a much deeper knowledge of what can happen. And this year, for the first time in 25 years, I'll be greeting the New Year by myself.  

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my life

Ok, so I have been trying to decide how to start this. I want everything to be smooth and flowing. I guess I should start with 2001 the worst year of my life. Well, maybe not the worst, but close. The year actually started out pretty good. I was looking forward to NASCAR starting. My mom was going to get a pacemaker so that she would be able to breath. They scheduled everything for her in March of 2001. February 18 was when my world started collapsing around me. Dale Earnhardt died in a crash in the final turn of the Daytona 500. That devastated me. He was my hero. As you have probably guessed by now that NASCAR is my life. It is the one true love that I have that is constantly there for me. Every week from February until November, I can depend on it. Still beening very depressed from that, it was time for Mom's surgery. I talked to her the night before, and she made me promise that if anything happened, I would let my dad suffer through it and not come here to help. My dad called me the next night at 12:00 AM to tell me that she had a stroke. That was March 7, 2001.

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Entry 2 - Keep trying Jules

Only got up once last night, spent some time on computer, finally went back to bed about 3am. Don't feel too tired today, seems most mornings I have to make a big effort to get started.   The South East Asia dissaster is making me feel so down, I know I'm not alone with these feelings. Sometimes I guess that you are powerless to do anything except make a small donation. Our local R.S.L. (Returned Solders League) are requesting donations of clothes, shoes and the like - can help there also.   I have to move on, getting depressed won't help anyone.   Even though I was slow to start today, I had a one and a half hour session at the gym. My strength and balance have improved but I want to improve more. The only way I can do this is stay committed to doing what I can on a daily basis. I'm lucky to have a new gym and swimming pool in the neighbourhood. Am still waiting for the clearance to swim, maybe next week when I see Praskash Nayagam.    

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First Entry

Just a draft attempt to check I have set this up correctly. I'll come back to it when I have caught up on some sleep. Have had a few bad nights, 2.30am now, I must close down this computer and get some sleep, very hot day forcasted for today. I think I have the general idea of this journal programme now, will try again later today.  

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