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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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My story

Hello, my name is Louise. I had my stroke 4 years ago at the age of 17. The only thing I knew how to do was to get on with life.   My stroke left me with speech problems, cognitive problems and mild perception problems. However, after 3 months of sleeping, I went back to work and managed with it. 11 months after my stroke I went back to college and then progreessed onto Uni doing occupational therapy.   I have had diffuculties but just got on with 'normal' living. Well, that was until this year at Uni. I was placed on a stroke rehab unit. I was looking forward to it but the challenge was too much for me and I didn't realise it at the time.   The placement was meant to be for 8 weeks but after 6 weeks, my educator told me that I was not passing and so I failed.   My parents have not been helpful saying that I have failed and made me feel like a disgrace. They think that I am not taking Uni seriously. However, my Uni and my boyfriend have been 100% supporting.   Anything, that my story in a nutshell. I'll keep posting.   Louise

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Today- day one

Well history is being made, my first blog entry. It is 10 a.m. and I am showered and dressed. Wonders never cease! Well really we are refinancing our mortgage and today is the closing, so I had no choice but to be on the ball today. Once we refinance, I'll get a line of credit to renovate our small barn in our backyard into a small little house for me. I'm excited about renovating and designing and decorating the barn. It is a whole new life and chapter. I'm looking forward to it. Actually I'm looking forward to the whole idea of being single and getting on with the job of creating my new post stroke life. I have been in limbo for three years. Waiting for the spouse I had to get on with acceptance, to be by my side helping to create this new life. But one can only wait around so long for someone to get their act together.   I thank god I had the stroke. By having the stroke I believe that my eyes were opened to many things. Living my life doing things that are important to my inner life. Being free from the social restrictions or obligations that I was wrapped up tightly in. A chance to really see my choice of a life partner. An opportunity to expand my mind learning about zen and the chance to explore other ways of thinking. I'm not just existing on auto pilot anymore. I never would have learned to use the computer, never explored the internet, never met the friends I have. I am alive and healthy and retired and I have the blank canvas of a whole new life stretching in front of me, what more can I ask for? I'm not knocked down, used up, or finished by this event called stroke. I am empowered and taught by it. I have been given a chance to make a life again, reminded by a ghost of christmas past what I once wanted out of my life. I've been not so gently reminded that I lost sight of what was important at one time. I sold out my ideals to have the life that was ripped from me. I do not waste time anymore yearning for what once was. I see the error of my past ways. Maybe I judge myself harshly, but I am trying to live each day honestly, free from the considerations of society and self. Pam

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I'm going to give this a try ;)

Well, I'm not very good at keeping a journal but I though I would give it a try. I doubt I will write here everyday, but I will try to as often as I can. For now that's all I have to say. Will try and come back later and type some more. God Bless!   Tania

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My Stroke Story

I had my stroke on New Years Day 2004. On Christmas Eve '03 I went to a Chiropractor for the very first time and had my neck adjusted. I had been having neck spasams after having the flu and thought a Chiropractor might help.   After the adjustment I got real dizzy, nauseated and broke out in a cold sweat. I asked if this was normal. The Chiropractor said "NO, but it's probably just a shock to your system" He offered to let me set in the office until the dizziness passed. I knew he was getting ready to close for the holiday's so I told him I'd just set out in my car. It took around and hour or so for me to be able to drive. I went home and went to bed. When I awoke I felt fine and figured that the Chiropractor was right. I went back for a 2nd visit on the 29th of Dec. He adjusted my neck but not near as sharply as the first time. I got a little dizzy but not anything too bad.   On New Year's Eve I started getting real dizzy buy again didn't think too much about it as I had started my minstrations the day before and figured it had something to do with that. When I awoke on New Years morning it was like I was on a merry-go-round and could not get off. I told my husband, Lee, that I felt funny and he told me to get up and see if it would go away after a while. Well it just got worse. I started to slur my words when I talked, and I couldn't swallow. That really scared me. My balance was also off as I couldn't seem to use my left side, and I had double and blurred vision. I also had a dull ache behind my left ear.   Brain Anurisims run in my family and I was terrified that that was what was wrong. I didn't know the symptoms of a stroke. My husband rushed me to the local "Minor" E.R. where I started getting the hiccups every 15 min. or so. There I was examined and told I just had a Upper Respatory Infection. The doc. perscribed a cough syrup with codine in it and some antibiotics for me to take even though he was told that I couldn't swallow. I was released (by this time I couldn't walk at all) and went home where I started to vomit and dry-heaved all night. The next morning on the 2nd, we went to the "Main" ER and I was diagnosed with "Bells Palsy" due to the left side of my face had started to droop. They gave me a bag of fluids through an I.V. and perscribed me some steroids and herpies medication to take (I still could not swallow anything). Again I was sent home.   On the 5th (after the weekend) we were able to get in to see my Mom's family doc. He said that I had been diagnosed wrong at both E.R.'s He said if we pinned him down right then he would say I had either suffered a stroke or had the begginging stages of MS. But that he wanted to run an MRI to make sure. So, on the 6th I had my first MRI, which came back with swelling on my brain. My mom's (now mine too) refered me to a nero-surgen in Dallas. I went to see him on my 29th b-day, Jan. 7th. He imediatly addmitted me into the Hospital where 3 more MRI's (this time with die in it) were run. It was confermed that I had had a brainstem stroke due to trama to the back of my neck. The left main artery had been completly severed and the right one had been dammaged.   We concluded that it must have occured when I went to the Chiropractor the 1st time as I have had no other "trama" to the back of my neck.   I was put on Heprin and eventually Coumadin to thin my blood. They put a feeding tube down my throat which I didn't tollorate at all. So they moved it to my stomach and started me in re-hab. I stayed in the hospital for 17 days total.    

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Rehab/Recovery

I came home with a walker but don't have to use it now. I also came home with a shower chair, which I still use from time to time. I also had a feeding tube which was finally removed on March 29th, 2004. I had around 4 months of re-hab and have recovered a great deal. Although I will never fully recover (I don't see how anyone can after going through such an ordeal) I do feel like my life is finally getting back to normal.   This has been the bigest ordeal of my life(that I remember) I am a twin and was premature when I was born; But I don't remember that. I truley belive that I am a walking miricale and would not be here today if it were not for all of the prayers said for me. I consider myself blessed to have such a wonderful support system. My husband, family, and friends have all stood by me and pushed me to do my best and try my hardest. I thank God for them.   I still have problems swallowing some items but generally can eat anything I like as long as I take it slow. It takes me about 1 hr to eat a meal. My balance continues to improve and I can now drive again. I didn't realize how much I missed my independence until I was allowed to start driving again. I'm up to walking a mile a day 3 to 5 times a week. I give God all the credit in my recovery. For I know without Him by my side I would not be where I am today.

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My Daily Routine

The following is what a normal day consists of for me:   I get hubby off to work and kids off to school. I then go back to bed for a few hours. When I get up I do my morning chores (ie - make beds, pick up floors, clean off things) and eat breakfast. Then I relax and watch tv for a while or take a walk. After lunch I do my afternoon chores (ie - do some laundry, start dinner, sweep, mop, vaccume)   Throughout the day I get on the pc and check my e-mail, come to strokenet and check things out, etc....   Once hubby and kids get home we have dinner and I clean up the kitchen. Then it's relax until bed time. Then it's get ready for the next morning, take showers and go to bed.   It sounds preaty simple, but it take a lot out of me. But I am grateful that I can do this much. In the beginning I couldn't do a fourth of what I can do now. I hope as the years go by I will gradually be able to do more for myself.

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Celebration!

I have had many blessings over the past year and I'm sure many more are to come! When 2004 started I never thought I would see my 29th birthday much less 2005. I spent my 29th birthday in the hospital not knowing if I was going to live or die.   So this past Thanksgiving and Christmas were very special to me. I enjoyed them tremendously. My 30th birthday is tommorow and I am very much looking forward to it.   When I had my stroke my hubby and I were trying for our last child. The doc. told me that it would be very risky for me to ever get pregnant again. But that if we did plan on having one we should at least wait until Jan. '05. Well I figured that was that. There was NO WAY my hubby would wait a whole year to try again.   Imagine my supprise when on New Years Eve '04 he told me that he DID want to start trying again.   Now I know it's going to be "risky" but I have put it in God's hands. He saw me through the stroke and he can carry me through a high risk pregnancy too.   I'm hoping to find out soon if I'm pg yet or not. We shall see.

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Coping with long distance

For 3 1/2 years, I lived in Phoenix while my dad took care of my mom. It was just as stressful as living here with them. Maybe more so. I talked to them every Wednesday and Saturday for those years. I never made plans on those days, because I didn't want to miss their call. I often wondered if something happened to my dad, would my mom's caregiver call me? Would she just keep taking care of mom and not let me know. I was a nervous wreck if dad was 3 minutes late calling. I gave him 15 minutes one time and about had a panic attack before I called him. In all realty, I am surprised that I didn't have a heart attack or stroke myself. I am really surprised that I never got an ulcer from worrying so much. I felt so empty and alone during that time. My husband tried to help, but he didn't know how. I didn't want to leave my job. I was making great money and we had the "perfect" life. Now, looking back, I don't know if I made a mistake coming here or not. I don't know if I was right to wait all that time to come here. I get confused when I think about all that.   I guess the finally descision in us moving here was, I had started drinking heavily and our marriage was falling apart. Most of it was due to my not being here with my mom. It was the only thing we thought we could do to save our marriage and me.   My husband made the decision. I told him I wouldn't. I didn't want to hear everyday how unhappy he was by moving here and feel guilty all the time that we did. We both wanted a change. It was more change than we wanted, but that is another entry.

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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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