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Entry #1


Justice9

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Okay, so here goes my first day of blogging about my stroke. It has been one year, 7 months and 1 day since my stroke. It has been 1 year, 1 month and some days (I don't do #'s well) since my heart surgery. I am struggling these days. A few weeks ago, my father, mother and grandmother decided to have a kind of "intervention" for me. I was planning on driving to TN to stay with a friend for a few days. They decided I shouldn't drive. My mother decided I shouldn't even drive to work! Dad really ripped into me and I totally cried and yelled. They don't understand. They try to compare my experience to their experience to them getting old or whatever. It isn't the same. It happened to me in about 10 minutes...not 30 years. I lost who I was overnight. I hate when people who have not had a stroke tell me their story of losing thoughts or words. They don't get it. It is so much more than that. I lost so much and continue to lose. I am shown every single day what I have lost and how I have changed. Yes, I have learned and grown and blah blah blah...I get sick of being positive all the time. It sucks. And I am dealing with it my own way. What gives them the right to tell me I can or can't do something? I am 38 years old for goodness sakes! So, all of this to say that I no longer tell ANYONE when I am not feeling good. When I need my migraine meds, when i am exhausted, when I can't think straight...all that fun stuff, I don't tell anybody. I am not going to have them fretting and worrying and trying to prohibit me from life. They tried to cage me, they tried to set boundaries on me. I cannot be caged. I will not. I drove to TN alone before...all night, in a thunderstorm. And I was fine.

 

I have to be fine. I don't know how else to be. Some days I wonder if I feel this way bc of my stroke, or if I just feel this way. My kids are my motivation but sometimes, even they don't get me out of the depression. It's not like I stay in bed all day. I still do the things I am supposed to do. I don't know what to do about it some days. I do know that I am sick and tired of doctors and tests, blood draws and meds. I'm REALLY done with all that.

 

Am I really this alone?

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J, Glad you made this decision to start blogging. Blogging for me is

very therapeutic which I think you will find out. I understand what you mean when family has no idea what is going on with your health. We here

encourage you to blog all your thoughts, rant and rave here put it down

and relieve yourself from the thoughts bouncing around in your head.

Sounds like you don't have any deficits from the stroke. Do you?

Jeannie

 

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Justice, take a step back and listen to the advice. They may not be comparing your illness to theirs. They may just be trying to offer comparisons so you can make an informed decision and be safe. I also feel sometimes that people are trying to second guess my decisions and I am only a caregiver. Try to meet them halfway: you will take a cell phone, you will check in every hour, you will take a break at that time and rest. You will take your medications as prescribed and will eat when you are supposed to. You will have some sort of liquid, preferably water, with you at all times in the car. You will pull over if you feel disoriented and you will call. You will call immediately upon your arrival. You will have an envelope on the passenger seat with the following: emergency phone numbers, list of medications, dirvers license, short medical history. And same same (as Bruce says) on the trip back.

 

Please try to keep an open mind as to what you have accomplished in the last 19 months and be proud. Raising children and keeping a home as well as being able to drive and work and enjoy life. You will have your bad days, but hopefully they are becoming less and less. So try not to dwell on what your have lost but rather what you have EARNED back. Report in all the good stuff that happened that day or week and let the bad stuff slide. Example: Mom I cleaned the house, went to work, helped the kids with their homework. I did great today!

 

Best of luck and remember, you must be safe and if you don't feel that way no one else will either. Debbie

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justice:

 

you are not alone, reading your blog remindded me how I felt in my initial year just after stroking. I stroked at age 34. My husband would not allow me to drive for almost 2 years and his concern was that what if I get inti accident and hurt someone or hurt myself. I listened to him at the time, but together with him I took driving lessons, modified our car and now driving local, for freeways he is my designated driver if we want to go anywhere. So life is still good. for me my son was huge motivation to reclaim my life as mom and wife though I had to work on my self esteem for loosing of my software engineer title. & blogging my good, bad & ugly days came in handy to deal with my self esteem issues. Today after 6 years at age 40 I am loving newme.

 

Asha

 

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I just now realized that I had even written this blog! I totally forgot. Thank you for the comments. I ended up letting my parents buy my plane ticket to TN. Which I felt was more frustrated to me than driving! Trying to find where to be by myself etc. BUT I did use the little blue envelope they give you for "disability" people. And at one point I thought, "WHY would I drive 8 hours even if I never HAD a stroke when I can just fly!!" DUH!!!

Anyway, thank you for the encouragement. I do like the idea of checking in with them, etc. So, that will be something I will try.

Yes, I do have deficits...but they are invisible...

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