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19
May

Advice

I just spoke with a stroke survivor’s brother. This person sought me out and asked for my help and my advice. My advice was that for starters his sister needs to get into an intensive rehab program and begin a practice of daily meditation. This information was then given to his doctor who advised this family completely the opposite of my advice and said an intensive rehab program would be a waste of money.

Ok. Ok. Deep breaths. Who do you think you are you arrogant AHHHHHHHHH to advise your patient to NOT do what I advised?  Who do you think you are?  I am the one who had a massive stroke and recovered amazingly well,  NOT YOU.

It is so unbelievably, incredibly frustrating doing what I do for a job, having been through what I’ve been through, knowing what I know and feeling as if no one listens to me. The right people aren’t listening anyway. This doctor obviously doesn’t have her patient’s best interests at heart. As mine did not either. According to multiple doctors of mine, my recovery was going to end at around 2 years and my life was pretty much over. I was written off.

Please go here for a better, affordable alternative to learning Transcendental Meditation.

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14
May

All better

I’m pretty sure that the general consensus when someone sees me and then learns what happened to me is that I’m over it and don’t need any help anymore.  I look great, so what could I be dealing with now?  I am still dealing with so much crap on a daily basis that it’s hard for me to get through each day let alone think about the future. I can’t write – at all, I can’t eat or drink with my right hand, and I’m right handed. I have to ask someone to cut my f’ing food.  I can’t run. My voice sucks and sometimes people still think I’m less intelligent because of it. And because of the speech disorder it’s difficult for me to speak up and defend myself so people think I’m even more brain-damaged and stupid. I can only wear certain shoes because I walk weird, no heels ever again. My right arm starts shaking at really inappropriate times. I have horrible balance and I have A LOT of trouble on stairs. I get debilitating migraines once a month that last for 3 days. Don’t get me started on the emotional stuff that this has caused. Ok let’s start to talk about that. I’m incredibly reactionary when someone is insensitive to me. I now have Post-traumatic stress Disorder.  So I fly off the handle at little things. I spend days at a time in tears and not being able to function. Sounds like fun huh?  Until I met Pat I really wanted to be dead. He makes me not want to be dead.

But I look so good and seem to be doing so well –  what could be wrong?????     

6
May

Craniectomy

This post is for my family, friends, anyone that has had a craniectomy and their family and friends.  Something was said to me yesterday that made me realize that I have not been more than abundantly clear about something the way that I thought I have been more than abundantly clear.  I was speaking with someone about how sometimes it hurts when someone touches me in the wrong spot on the back of my neck because of the brain surgery.  She said, “but the surgical area would be healed by now.”  Let me be clear.  The brain surgery that I had is called a Decompressive Craniectomy.  ‘Ectomy’ means removal.  A part of my skull was cut into and REMOVED in order to allow my brain to swell after the stroke.  In some cases when a craniectomy is performed, this piece of bone is put back.  In my case, it was not.  The area of my skull that was cut out was not replaced by the piece of bone that was removed or by anything artificial.  I literally have A.HOLE.IN.MY.SKULL and will have A.HOLE.IN.MY.SKULL until the day I die.  So, it hurts sometimes when pressure is placed there.

Here is a pictorial description of my surgery….

11

 

Here is what the back of my head looked like when I became conscious again and woke up after surgery…..

scar

 

Sorry if these pictures disturb you but deal with it, I certainly have had to.