Thursday, January 31, 2013

I am feeling better, and then the shoe drops...

I am feeling better and then the shoe drops.. All of a sudden I have a migraine and a night of so much throbbing pain I cannot sleep.
Since the surgery, I have only been able to sleep on my right side. If I sleep on my back or try to the left I get dizzy...
Well, the other night my right side said enough already , can't accommodate your abuse anymore.. I eventually got up and tried to sleep in a chair so I was sitting up and taking the pressure off my right side..
So, time for new plans, calling the doc to see if I can get some more pain relief, scheduled some acupuncture and booked some massages...
The fight continues...

Sunday, January 27, 2013

Today I had a migraine ,much to my surprise..

Today I had a migraine ,much to my surprise... Throbbing,pain, headache and head pain that still remains from my surgery two years ago... I was not able to do anything all day, but try to rest.
Eventually, I took a Tylenol with codeine which finally gave me relief...
I think my head hurts from eye tension since I only use one eye most of the time.
And, my head hurts from the brain bleed surgical procedure...
So, this week I had a night spin and then this migraine.
Another fun week struggling on with my collateral damage from the surgery.
But, I keep struggling on, glad to be this far...
I lick my wounds and move on...

Tuesday, January 22, 2013

I had a spin last night..

I had a spin last night..it has been so long since I have had one. I handled it very well with all the experience I have had at flying,spinning and twirling.. My husband grabbed me right away, always ready to be there for me. To help ease my trauma. Thank you ...

Afterwards, it takes a little while to calm down and go back to sleep.

The next day I felt tired,headache. No exercise today.

My husband feels once again that it is positional. I was laying on my back which my brain is not ready for. It will still take more time. Along with my inability to lay to the left.

But I will be patient and keep working at it slowly. It will come.
It will come...

Sunday, January 20, 2013

P is for permanent...

P is foe permanent was a hard lesson to swallow... Naively is a blessing..I am so thankful I didn't know how difficult the surgery and recovery was going to be... I didn't want to know, too scary...
When I told people I had a brain bleed and needed surgery,people would tell me they knew someone had died of a brain. Thanks...

So,now I M adjusting to the permanent stuff.. Functioning on one eye, hard to read, tiredness,can't drive at night, light vertigo,balance issues, vestibular issues, motion sickness, so many activities I can't do...

But I'm here , my life was spared, so I can do what I can and I don't do what is no longer possible..
But, I'm here...

Saturday, January 19, 2013

Hard to turn my neck,can't sleep to the left...

After my surgery I could not turn my neck,turn to the left, can't sleep to the left,can't swim to the left...
Also,after surgery I had to go to rehab and learn how to walk, relearn balance skills, how to get into a car safely, etc..
Also, my left eye wouldn't shut ,so I had to tape it closed on and off.
Had double vision with both eyes open.
Could barely read or concentrate when I was tested by the occupational therapist.
Could not go to the bathroom by myself..
Could not do anything without supervision...
Everything improved overtime .
After two years my neck is still sore, hàrd to turn to the left,can't sleep to the left,can only function with one eye, can't read a book, can use the computer for about a half hour at a time. Still have to tape my left eye on and off all day.hard to drive with one eye. Tire easily. Can no longer work and now on disability. A new world for Nicki...

Thursday, January 17, 2013

It was hard not to think that I could die..

It was hard not to think about dying. I was so shaken from the big event, I didn't know what my future would be... So, I just tried to focus on just holding on...I just focused on survival,it was all I could focus on...

After I hàd my big blowout I had to keep my left eye patched..

After I had my big blowout I had to keep my left eye patched all the time... If I took the patch off for a second I felt like I was on the edge of a cliff and was about ready to fall out.
It was so scary ...

Botox and acupuncture ....

After surgery and I delt better , I tried acupuncture to get my face looking better. I was skeptical at first, but it helped tremendously... I could look in the mirror and start to see my old face again...

I also used Botox because my eyelids were not even.. It was amazing how you could practically see my eyebrow come down to match the other one...amazing... I also used Botox onone eye because my lower eyelid would invert--the Botox worked like a charm...

Amazing!!!

Tuesday, January 15, 2013

George Gershwin , you left us too soon.....

George Gershwin ,you left us too soon... I live in a time where I got to know why I was having severe vertigo, blacking out,etc.. Mr.Gershwin had no idea why he was so sick,what was causing his headaches,his sickness...and he was too young to die at 39 and didn't even get to know why...
When I had my brain bleed I knew in a week exactly what was wrong with me. I would hate to not know what was wrong with me.. And, his poor family could do nothing but watch him suffer..
So talented, so much to give the world and he didn't get a chance because of the time he was living in. So, I am blessed to live at a time when they could diagnose and save me..
But,mr. Gershwin ,I won't forget you...and I won't forget all of the rest of you who died without getting a chance , or not getting to understand what was causing your illness
I live for you too... And , I hope was I get better i hope I can help other with their brain illnesses...





Fear of flying...

Fear of flying ... The first time I had a vertigo attack when I was 8 and felt I was spinning down Down to the center of the earth my fear of flying started...
Fear of the carousel, the Ferris wheel when I screamed my head off until he stopped the ride to let me off..
Fear of flying the first time I flew and the plane turned and I grabbed a total stranger..
On and on..
Fear from my head to my toes....

Monday, January 14, 2013

The restaurant swirl in the restaurant...

The restaurant swirl happened pretty recently in a restaurant. Two years after my surgery.
But all of a sudden I was sitting at the table for about 15min.s and I took off. Had no control of my body,dizzy and I felt like I was going to push everything off the table.. So, I. Had enough in me to control myself so people at the table had no idea what just happened to me. And took a Xanax an put my ear plugs in to block the noise.
You never know when the shoe will drop... I am thankful it doesn't happen as often as it use to before the surgery...

I am so lucky that I got to raise my own kids...

I am so lucky that I was able to raise my own kids... When they were young I could play with them,care for them,drive them and enjoy watching them grow up...
I am so lucky that I wasn't sick in those early years...

Dear brain

Dear brain,
I have thought of writing to you for a very long time....I had no idea until I was 51what you were going through....first, thank you for working on overtime to save me... I knew something was wrong, but had know idea what you went through to saving my life... How much pressure you were under even though you gave me some signals which I just didn't get.. I developed high blood pressure,had horrific vertigo attacks, had constant ringing in my ears,could not stand noise or bright lights...but, I wasns't thinking of you at all...
How angry you must be....
I am so sorry...
Thank heavens that my cavernous angioma was just leaking ,or I would never had made it...
And than heavens to the MRI machine or I would not have known what you were trying to tell me...
And thank heavens doctors learned to perform the surgery...
I am part od the first pioneers to have such intricate surgery that saved me...

Sunday, January 13, 2013

I don't have Betty Davis eyes, I have kaleidoscope eyes....

I don't have Betty Davis eyes, I have kaleidoscope eyes...
Ya gotta laugh...

My eyes don't get along, one is republican and one is democrat...

My eyes don't get along at all... One is a republican and one is a democrat! They truly don't... My eyes don't converge properly. What I mean is that when I turn my head there is a lag....I can't tell you which one is slower because I don't want to give away my political persuasion!also,when I look forward one eye is blurry, ghost imaging,just messy. When I go out I must tape my left eye
Because I get dizzy and you just can't see well at all...
So, I go out in the world I must tape one eye....
What caused it? The left eye muscle was damaged when I had my brain bleed...

Saturday, January 12, 2013

I had trouble with sound out in public and kept asking docs what to do...

I had trouble with my hearing and could barely handle going to a restaurant ,wedding,etc....
I kept asking my docs what to do and they had no answers for me.
One day I was complaining to a friend and she suggested going to an audiologist to have ear a plugs made for my ears...
I can't begin to tell you how much that helped me!!!!!
Freedom!,,, FReedom to go to parties,events,etc.
But always sitting in a quiet spot, or going to an early bird special,eating at off hours...
Lights bothered me too, so I was careful to pick the restaurant...

Try,try and try!!

Try,try and try!
Whatever your issues are you have to keep trying to solve it. If your eye gel isn't doing it,ask your doc,research yourself,ask fellow sufferers until you get some results..
There are websites to review, org.s like the cavernous angioma alliance to email questions to..
I found with each issue I had my husband would start by looking on the computer,trying different docs, just keep trying...
I can't tell you how many different docs I went to..
Keep good records, ask questions, think outside of the box because the brain is still new territory ,constantly changing...

Friday, January 11, 2013

After my brain surgery my left eye would not close so I renamed this eye Big EYe...

After my brain surgery my left eye would not close any more.... After a year of taping my eye and reaping my eye I researched what could be done. It was tiring to put drops in my eye every other hour and I felt uncomdortable because my eye wouldn't,t shut...
I went to two different doctors and have gotten two different responses ...

Doc 1. He wanted to give me the works. He wanted to add some skin to my bottom lid to lift it up.
He wanted to open my eyelid and place a piece of metal in the corner of my eye to make
My eye shut.
He wanted to sew the corners of my eye to lift them up to pull the bottom of my eye up...
Doc 2. She explained that procedure number one would involve a lot surgically.
She wanted to open my eyelid to place a piece of metal in the corner of my eye to
make my eye shut.
She explained that sewing up the corners of my eyes would leave me with only half an eye open



....