The mark of zorro....

The mark of Zorro is what I find all over my house. Nothing exciting like a z slashed with a sword by a

Dashing young man named Zorro, no such luck. My mark of Zorro is tape and band aids stuck everywhere all over the house. Since my left eye didn't shut after my surgery it had to be taped ànd opened constantly to put gel in to keep it moist. I had tape or an eye bandaid on the bottom of my shoes, attached to my sheets, stuck in my dresser, falling out of my purse,attached just about anywhere. 

After awhile I had to order it by the bucket loads, too bad they didn't sell it in a ten gallon drum..

What keeps you motivated is that you don,t want your eye to dry out and stop working. So ya do it and do it and ya do it...

Hard to turn me neck, get dizzy...

Hard to turn my neck, get dizzy. I have been working with a masseuse who is familiar with cranial sacral work... She knows how to massage my head which is also still sore from the surgery which was almost three years ago. We are working on getting my range of motion back which is mostly about turning my neck while lying flat. This is very difficult to lay flat and to get my head to look straight up. Week by week we work at it, then the next step will be to turn it to the left. Turning left gives me dizzy/vertigo so I work at it slowly. Be sure you work with an experienced  masseuse . Go slowly. Go slowly. Go slowly...

Say hello in there to the others...

Say hello in there to the others. So many times I see people who know me who don't even ask what happened.... 

That's why I love kids, no matter where I am kids always stop and ask me what happened to my eye or my face...

Don't ever forget to say hello and how are you?

I wasn't perfect at it either so no blame,just always learning to care more.

I'm like the ball in a pinball machine...

I'm like a ball in a pinball machine. Through this whole recovery and before I feel like I have bounced from one direction to another. Different docs, physical therapy, massage for myo-facial pain from the surgery, trying Botox for skull pain, migraine pain, going to the psychiatrist to manage and try different drugs to give me for energy, less head pain. It is a revolving door, always trying different things, needing different help as I recover. Acupuncture.. You name it i have been there. Gluten free diet.

It all helps, but there has been no flow to my recovery.

I hope in years to come as they learn more about the brain, I hope help will go more smoothly.

I was lucky to be saved as I am a pioneer in this type of recovery.

I hope by writing this I can help others and future generations cope with brain aneurysm  such as mine.

Being in the stem happens to not be so common , effects vestibular issues ,etc. so complicated. 

As a matter of fact I got a call from my surgeon three years ago and he asked how I am doing. My answer?half better, half worse.

One weekend we went to DC ....

One weekend we went to DC and it was the most walking I had attempted yet. I was doing ok   But it was like walking in a sandstorm . I had somebody from the family hold me on each side because we were ib Georgetown which was crowded and the streets were crowded 

...

Now I know how Lawrence of Arabia felt everyday...

Five stages of recovery.....

Five stages of recovery , just like five stages of death..

First, denial. Who can believe when they tell you need brain surgery. I couldn't hear what he said, I just pictured Frankenstein anad the bowl on his head with the electricity buzzing... You cànt believe the doctor is talking to you. It is a process to take the information in. De Nile , your first stop.

Anger-how did this happen to me?? Why me??? Life will never be the same. I'm scared. Shock..

Acceptance -after the initiàl shock and time , there comes acceptance. It takes a lot of time,support and love to get to acceptance ...

Making he most with what you got. 

Who knew how imp. Eyebrows are, every part plays a role...

Who e ver knew how imp. Eyebrows are, and every part of your body is ?????

My left eyebrow didn't close after all after my surgery, had to tape it closed on and off, and use gel constantly...

I used breathe a right strips to close my eye , pirate patch, tape,etc.

So, I had surgery and they put a piece of titanium or something in my lid which helped my eye to blink but not quite.

Then, I had surgery on my bad eye where they sutured it up and now my eyes are even, now there isn't so much whit under my left eye showing so it is protected, and my eye blinks better.

Not perfect.

But, I don't have to patch it at night, just use gel.

I can use left glue during the day which is nice.

My eyesight is a little better, maybe...

Little disappointing, but no regrets.

I just believe it is better and cope with this is maybe as good as it gets.

I can still see...

But, now I know how important eyebrows are....

How come today I had a spin??...

How come today I had a spin? I have a cold, but out of the blue, I have a spin..

I remained calm, took a Xanax and on with the show...

How to deal with bandaging an eye..

How to deal with bandaging an eye was a never ending learning process for me. After surgery my left eye would not shut due to cranial nerve damage.... I had to have it taped on and odd so the eye wouldn't. Stop working and had to put eye drops in every hour so my eye wouldn't dry out.the docs put on tape that was hard to pull off my face with gauze which was also itchy and uncomfortable. After about a week or so I was introduced to a neuro ophthalmologist who took a breathe right strip which she used as a bandage which was much more comfortable.
I also used a pirate patch ,had a friend sew a patch over my eye glass, I just kept trying different things,
Then one day, almost 2.5 years after my surgery a woman stops me in the gym and asked me why I was using such uncomfortable tape on my eye. She sent me right to the drug store to start using eye bandages. Why didn't someone tell me that before????
Well, now you will know! What a relief...
I also wear dark glasses for bright lights and the sub.
Also a cap helps a lot....

When you start a new medicine....

When you start a new medicine be sure your doc has checked to make sure it agrees with your other meds you are already taking.
Discuss with doc the side effects...
I always start a new drug with half of what the doc prescribed to see if it agrees with my system.
For example, I tried nuvigil , only half of what the doc suggested. Half of a nuvigil works great , when I tried the other half later in the day I got jittery. So, now I am going to take my half in the morning and try half of a half later in the day...
I have learned to not rush a new drug, especially psychotropic drugs..

I love Picasso ,s cubism...

I love Picasso,s cubism because it reminds me so much of how I have felt through my brain bleed... In pieces, not all put together, some parts of me work better than other parts, I think unglued would describe it the best...

Read and join the cavernous alliance assoc...

Read and join the cavernous alliance assoc. this is where you can learn about other people,s experiences and get advice and make fellow friends who are going through similar experiences. I couldn't read it for a long time because I was scared and was afraid of what I would find out. Be ready to embrace the good and the bad...
Recently I read about a fried who I have been following for a long time who might need surgery again. Of course it scared me at first, even though I know that can happen again. It took time to process it and now I realize that could happen to me too.
But, now I am no longer afraid and leave each day.
What will be will be....

What to do when you get an MRI...

What to do when you get an MRI ...
1)depending on your case, be sure you are sedated if needed.
2) depending on your ins.,offer to pay cash, it can be cheaper. I paid around $500 for my last one.
3) be sure you have it in a closed MRI , the other ones are not for us.
4) make sure you have the appropriate contrasts done
5) make sure get the right cuts which the docs will understand
6) ask questions...

It feels like being in a twister, it is just inside your head...

It feels like being Ina twister, it is just inside your head.. I have tried so many times. To put it into words what it feels like when you have a brain bleed... You are zooming through the sky, you can't really feel your body, you want to grab onto anything you can reach,your heart is pounding..
I often land on the floor because it pushes me out of bed and I think it might be searching for comfort...