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Look where I am at


SassyBetsy

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Next month is my survival anniversary number 4!

I wonder why I survived. As you know, I have had pain every day since the stroke. A variety of numbers on the pain scale, a variety of descriptor words, a variety of coping,treatments,including topical cream with gabbapentin in it, spinal stuff, biofeedback, opiates, therapy, relaxation, spiritual belief,and of course last but not least ice cream.

I was advised to think of this as my purgatory. Is this a punishment? How can I believe that, it does not fit my beliefs.

 

On any anniversary, I take stock, think about what changes, how far have I come, how does reality meet expectations, what do I celebrate? What do I strive for, do I still hope?

That is too much to think about, I simply continue ahead. I bless my doctors now that help me. I know it is in God's hands.

 

I talk to my best friend about it all. girl talk. heart open wide. one day, I was very positive and grateful , looking at it all with a hopeful spin, and my bestie dealt me a blow that floored me. She said, and I quote, "who would want to be you,look at where you live, you can't even take care of yourself."

 

Looking at that quote chars my soul.

 

I burst into tears, no it was more like a primal sob that resounded through me into the universe.

 

It is all true.  Honestly even I do not want to be me. But who I am makes a difference even now I believe. 

 

I have deficits, but I have abilities.

I miss the original me, of course. I hide now, ashamed of what has become of me. I rejoice in recovery, but know I am now  always battling to survive. I have health problems that hound me. 

 

I packed up all I owned and gave away everything before going into long term care. It was heart breaking. But it helped me survive in my circumstances. I felt betrayed by life itself. No one should have to pack up a whole life, as if I was deseased, except I was doing the work of eliminating all that was my life. But yes, I am no longer able to support, work, take care of myself. 

God spared my cognition. I wondered why. But it left me as me. Thank you.

I am not alone in shouting inside in a rage of pity party. I read stories here and know I got off easy.

 

But I know the truth. I celebrate the positive. but to the others in my old life, yet untouched, it looks like nothing to celebrate. While others have miracles, maybe better off than before their injury in health, well that is not me.But I am not a worthless Being now. I am still a Person. I still Cry, still love, still live.

I lost my life. I lost people,places,and things. But I am strong in my faith that says I am now blessed,reborn.

 

I do not know if blocking contact with this long friendship is over reacting as I do since stroke. It seems no one stops to think how telling me what is true, is also not true. And my physical pain is nothing compared to my heartache. 

 

I am avoided, but I hid too because awkward interactions, not belonging any more, isolated in a crowd, stranger to my own family, alone in an institution but granted compassion from strangers sometimes.

 

They send a normal person to engage in therapeutic talk. How can anyone normal possibly know. I think of families that lost homes in fire. They say at least we have our health, each other. And my friends with illness or death that struck, say at least they could be home. 

I am grateful for living where I am supposed to be now,for the help I recieve, for the lives I meet, for those who comfort me,try to keep me comfortable and alive.

 

I decided to give my body to science. I enrolled in the body donation program at my hospital. I like what they do for science,for people, and so I figure I can contribute rather than wasting the chance when there is a need for donors. I was going to donate organs, but illness changed me, so I changed how I will give myself away. I accept that someday I will die, which gives me the power,will,joy to live,be alive fully.

 

my days may seem futile, but they are my days. I rest, enjoy hobby, talking to people. I wonder.

 

strokeland is not on the map. our culture is strange,unique,variety of ways, unknown even to those who study it. 

Some who study it, eventually live it,nd can speak to us,help us understand a new planet.

 

I still am horrified at it all, and usually I spare others from speaking of unpleasantries. Yet others will come this way and need a guide,a role model, a path. Someone else may be a me.

I know I have used this site to follow others who have lived any form of this.

 

I am sick of feeling ashamed of pain, of disability, of unlucky. The worst is when they say, you so young, why it happen, if only you had prevented it, .......all thos innocent,ignorant true horrible things.

 

I am pressured to be silent,to be positive,to never show weak, which is pain.  well, pain is not for the weak. we, who hurt constantly,not chronically, are strong.

 

But I am me, and sometimes I am not loving this version, but it is not a version, it is me. And I am incredibly proud of me. And I know I am loved and waited for.

 

 

 

 

 

 

 

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I met a women who experiences constant pain and told me she honestly thought about suicide. That broke my heart and I started to tell her about you and all that you go through and yet you are optimistic. You have every right to feel the way you feel. I am at fault for vomiting positivity and for that I'm sorry. The woman I met has had a few TBI's that causes her body to contort and ache and she expressed almost verbatim the words you have said. You , though you may not feel like it, help others and in doing so are looked up to and admired.

 

I don't think completely blocking you friends is a good thing. You are still you. I cried reading your words. I will have to get to process  my thoughts first.  

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I am so sorry for your friends distasteful comment. I believe people sometimes say things and have 0 cognition of how what they say can impact another's life. Beyond that I see and feel a warm inspiration that always exudes from you. I learn from you. I hear your pain. I hear your joy. I have never felt once that you are weak. I have never once blamed you for sharing your pain and disappointment. I have always felt your words are raw and real...Thank you. I am not sending a feel better hug because I know that can vary from day to day and it is out of my control but I want to share with you a hug of acceptance. Just knowing you on this website has been a blessing in my life. Huggggggsssss

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You know how much you mean to me Pam, and how much you have helped me on my journey. I am one of those strange people who do remember others are worse off than me. When I am in pain  people like you inspire me to be brave and stronger because my suffering is only temporary. Keep on being you my friend and in the process educating and empowering others.

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wow.

I needed to have an acceptance hug, and I cannot think of a better thing as a virtual hug on any day. A hug helps when words elude.

 

Yes, blocking friends is dramatic,drastic, but I am wounded by her toxicity, and her view of me which sounded worthless and pathetic. It is so easy for me to see her point of view. After all, I also used to chase success, material things, and show off my home, vehicles,wardrobe, and invitations to stuff. My old life feels surreal. 

 

I would be in so much pain, the docs here would give me a shot that put me to sleep. So many drug trials failed. So now I am grateful for days I enjoy having meals, coloring, watching netflix, and texting.

 

Thank you Keli, I know I have yelled just shoot me a few times, while in the bathroom experiencing side effects from drugs that did not even work. But I seem to claw, cling, and survive, and delight in life while suffering. go figure. plus guess what guys, I hated the failure that antidepressants did not help the physical pain, but they made me feel a numb that blocked out every and all feeling. I was zombie. It terrified me. I was unrecognizable inside and out. I never smiled. Perhaps I just could not wait for the effects. I did not care enough to be suicidal, which requires making a choice. But as numb as I was, that felt horrible. Who can explain this.

 

I can talk about end of life decisions now that I could not before. I denied that I had serious health issues. Yes, living here where death is common, I know my turn will come. I am not ready  to go on the last journey, only ready in my preparedness.

 

 

 

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Pam :

 

your blog inspired me & like Sue I find strength to fight on  from you. Seeing you give such a strong fight to stroke & all side effects came with it. Sometimes people say dumbest things, what she says does not reflect on you, it is more on her that how she is scared of  handling all what you have handled in life. don't block her educate her in being compassionate to others, & forgive her, let hr know how you felt so hurt by her remarks. you survived for a reason & have been touching countless lives by your toughness & fighter spirit. Sending you lots of virtual hugs & peace

 

Asha

 

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