So went to ER room to be sure...

So went to ER room to be sure--I was there for hours, had a cat scan and they told me I had another brain bleed, scared the h out of me and insisted I be transferred to Northwestern which is all the way downtown. At first my husband and I said no, but they scare you to death, so I agreed.

I begged my husband to go home which he finally did.

It was hours before I finally was transferred to downtown.

I will tell you about that in the next post....

Had another episode....

Had another episode--I knew I hadn't been feeling good lately. When I stand up I have to wait someties for the dust to settle, before I can see clearly.

So, I was driving and my vision started to wane, I think it was tunnel vision.

I was dropping a friend off at her doc appt. and it started, I couldn't see the road clearly, but I continued on.

Dropped her off and then made it to where I was going, even though I knew I wasn't ok...

I called a friend who came and got me. I stayed home the rest of the day.

That evening my husband and I went to go get my car because I felt fine.

I was almost home and it happened again.

Ended up in the ER room...

The Chilean miners are my heroes....

The Chilean miners are my heroes... Where does that inner strength come from, to endure what they had to endure. To fear everyday being buried alive.

They are profiles in courage.

I have thought of them so much as I think of my upcoming surgery.

I'm afriad? I'm lucky to have the best docs, the best hospitals and the best love from friends and family a girl could ask for....

Looking for strength to have the surgery...

Looking for strength to have the surgery. I know it is the right decision. If I wait I could blow again, I could cause more damage, I could have memory loss, paralysis, who knows. I know I must do it...

Talked to the Doc again today....

Talked to the Doc today and he explained more about having the surgery. He explained more to me than any other doc had before. The most important thing is to PRESERVE WHAT I HAVE..

There is no telling what the next brain bleed could bring--loss of short term memory, loss of mobility, all kinds of scary shit....

During the surgery he would have a neurologist there to make sure everything is working, they would cool my brain down from 37 to 33 to protect me from injury, use a laser and magnify my brain by microscope up to 50 times.... Use a forceps, patch me up , get some titanium screws, ICU and 4 nights in the hospital. Stay in California for 2 weeks, and come home.

25% initially worse, 20% better. 95% end up the same or better, but should be able to remove the whole cavernous angioma.

That is a brief synopsis, didnt get all the details, but, I think I am getting myself ready....

Sometimes when I think about surgery...

Sometimes when I think about surgery, I picture the movie Dr. Frankenstein and Madeline Kahn singing in the background. I picture her singing, O Sweet Msyteries of Life, I don't know if she really is singing that, but I just picture that. It is so bizaree to think about brain surgery, that I go to humor to help me cope...

O Sweet Mysteries of Life, ain't that for sure!!!!

To Blow or Not to Blow , that is the question...

To blow or not to blow, that is the question...

I have meeting with several docs lately who seem to think it would be a good idea to have the cavernous angioma removed...

It is likely to bleed again and what then?

It has grown since the last bleed so it would be a good time to have it removed.

I have noticed some changes lately, especially when I get up , I often feel like I can't see and have to wait for the dust to settle so I can see again.

I don't want to live like this every day.

I am starting to believe it is surgery time...

Getting a opinions...

Getting opinions from different docs, the word is that I probably should do surgery....

I am going to get several opinions.

Startomg tp wrap my head around the concept.

Before I just thought it would go away, or only thought about it in the abstract.

Time to wrap my head around it...

Today I had spin.

Today I had a spin, just a normal day, but what was different about this one is that I knew it was coming...

I have noticed I have moments when my vision is like looking out the window of a plane when it is turning. Usually I just wait for it to pass and just keep right on going. But today, it started with some heart pouding, tingling and then the fish flopping started. Fish flopping entails what I call just taking off. I reach for things and close my eyes , deep breathe, to calm myself and hopefully stop the flying... It took awhile for it to stop, I know enough not to get up and wait for it to pass It's been about 2-4 hours, it take me awhile to chill from the experience, I stll felt dizzynes, tingling and of course some anxiety

I has happene so much over these past six years, that I know longer go ballistic.

But, it is not what I prefer...

I always worry about it happening when I am out, actually, it has...

I am remembering one day in England...

Having a flashback on a trip to England a few years ago.

we were out walking and I was trying to cope with all the vestibular stimulation , and all of sudden, I needed a taxi and had to rush home.

I had the dry heaves...

Always the party pooper...

So not my style....

I promise to be strong...

I promise to be strong, even when I don't feel strong, I promise to be strong.

I promise to be strong, I come from strong stock, from poor immigrants who turned their lives from lemons to lemonade.

I promise to be strong in honor of their memory and I promise to be strong to honor myself.

Even on the days that I feel lousy, have a headache, feel woozy, feel edgy, feel scary, I promise to be strong.

I promise to be strong to honor my husband and my children.

I always want them to think of me as being strong...

I remember watching Natalie Wood in...

I remeber watching Natalie Wood in the movie where she sings I am so pretty, I am so pretty...

NOw, in a sarcastic and kind of funny mode, I would like to change the words to I'm so dizzy, I'm so dizzy. She danced around the room with her dress and now I am flying around the room feeling vertigo, light headedness, etc.

Believe me, Natalie Wood's performance is much better than mine!

My name is Nicki and I have selected a hip hop...

My name is Nicki and I have selected a hip hop name after hearing so many...

So, since I have an eye issues, I have selected Nicki I...

I actually got the idea from the Black eyed peas guy whose name is Will I Am...

So, it is kind of fun to be 57 and have a hip hop name.

So, hello from Nicki I....

When I was a little girl I remember this lady...

When I was a teenagerl I remember this lady named Bertha. She was a very likable lady, but I thought it was so weird that she always had one eye glass shaded and never knew why.

It occurred to me the other day, that now I am like Bertha. And, I wonder why she had to have her eye patched, but I never asked her why and how she managed seeing with one eye.

I now walk in Bertha's shoes...

Remembering Arthur Ashe...

I always think of Arthur Ashe when the U.S. Open is playing in New York. At the same time I had a blood transfusion for an ectopic pregnancy, I was aware that Arthur Ashe had a blood transfusion for some procedure. But, unfortunately he did not survive and I was fortunate enough to survive.

I have survived several medical issues and am thankful that I survived the ectopic surgery, I sure wish Arthur Ashe, the tennis star had survived also.

Remembering this episode makes me appreciate surviving, and it gives me courage to survive my cavernous angioma.

It also makes me think that I tend to be a bleeder and it might be related to why I have brain bleeds In years to know, they will have more answers.

Meanwhile, I remember you, Arthur Ashe...

My daughter was visiting from London....

My daughter came to visit from London and my Cavernous Angioma Alliance membership pins had just arrived in the mail. I wasn't sure if she thought it would be dorky to give her one, or I guess fear that it wouldn't be meaningful for her, but, here is what happened.

I gave her my extra pin and she embraced how meaningful it was for me and she told me she will wear it on her purse everyday.

It was very meaningful to me ...

I still want my Mom, but she gave me the skills...

I still want my Mom , but she did give me the skills to cope with life and deal with whatever life gives you. Her mother and father came to this country to escape the Cossacks because of our Jewish faith. They worked hard and my grampa died of an appendicitis in his 20s. Can you imagine?

So, my mother grew up very poor, worked hard and was the first in the family to graduate from a University, in Economics no less...

So, she was scrappy, smart and tough as nails.

When my Mother was dying she gave me her final lesson , how to die with dignity and grace.

NO arguing, no negotiating with G-d, acceptance.

I was lucky to have her and now I carry her in my heart wherever I go.

Thanks, Mom...

I'm 57 & I still want my mom...

I 'm 57 and I still want my mom to talk to , to comfort me. She has been gone 12 years and I miss her everyday. What would she counsel me to do about all this? Be strong, live and fight on...

I know this might sound macabre , but I will tell you Mr. Blog anyways.... Sometimes, I picture her coming out of the cemetery just to give me a kick in the rears... And sometimes she has to bring Grama too. Anything to keep me on track.

You are never too old to want your Mom. And she left me too young even though I was 44....

I miss you Mom and I want you to know that I do remember everything you said.

I drove by a Disability Event ....

I drove by a Disability Event at our local high school and I was always compassionate towards people who were pysically challenged , etc.

But, this time I saw the event different eyes...

You are my diary, I have to be honest and tell you every thought I have...

I never pictured myself as being disabled...

I never pictured myself as being disabled.... That is probably politically incorrect to say, but that is how it feels. How could that have possibly happened to me? No one ever thinks it is going to be knocking at your door... It is just something you just hear about it and is never going to be at your door.

But, I am...

I have permanent disabilities that will be with me the rest of my life. And, even more things could happen to me...

This is all weighing heavily on my mind because I just went to the doctor.

Besides, this is my blog and my place to spill.

How did I get here? I wonder who else in my family had a cavernous angioma and never got to know what was happening to them.

I am so thankful for MRI machines and the opportunity to understand what has happened to me....

When the doc was explaining to me...

When the doc was explaining to me about the possibility of brain surgery, I can't help but conjure up Mel Brooks and the actress singing in the background. It's funny how the mind works to help you through difficult situations... I guess I always go to humor...

Since the brain bleed 5 1/2 years I have started to think of the length of my days.... I guess I thought of it before, but not really seriously....

But, once you are sobbing in the doctor's office over a medical situation you start to wonder what your length of days will be...

It is like an out of body experience to know that you might need not just surgery, but very dicey surgery. And, of course, you might come out with a new or even worse disabilities.

There is nothing like thinking things to death, I might say. And, pardon the expression....

When I went to the doc the other day...

When I went to the doc the other day to discuss the possibility of brain surgery and it is amazing how the body reacts.

The week before I had an MRI and had to have an IV inserted into my hand which was not a problem at all at the time.

But, when the doc started talking to me about my brain bleed, my hand started throbbing and continued to throb for several days.

Interesting how the body lets you know that you are hurting....

When I was a kid I was the only one in my family

When I was a kid I was the only one in my family who didn't need glasses... I always prided myself on my 20/20 vision and not having to take the endless trips to the eye doc as my sisters did.

Also, they both had to do eye exercises for lazy eye on top of it!

Funny how it all works out. I'm the one with the serious vision problems. Would be lost without my glasses... Do eye exercies and have 2 pair of glasses, one for distance and one for reading. I can't handle bifocals at all.

Awful Thoughts return...

Awful thoughts return after going to the doc and reviewing my latest MRI. NO change, but we had THE TALK....

I could blow at any time...

If I do it is straight to the emergency room and it probably means surgery.

Very dicey surgery because of the locations--my Cavernous Angioma is in my brain stem.

It's dangerous, but I am counting on making it through the surgery but who knows what condition I will be in.

They know for sure it would set me back... Maybe back to vertigo? Double Vision?

Could I survive that again?

So, hopefully I won't leak again--

I am feeling scared, sarcastic, why me...

I havn't slept the last 2 days, so hopefully my spirits will lift by tomorrow...

My favorite movie was always Harold & Maude...

My favorite movie was always Harold and Maude from my college years. Little did I know that I would often remember that amazing story...

It's about a young man who is suicidal and learns to cope and enjoy life from a woman who is at the end of her life.

All through the movie she sings, "If you want to be high be high, If you want to be low , be low",

I believe it is from a Cat Stevens song.

So, I hope I can help some young person or persons cope with this malady...

I will never forget that movie...

I went golfing with a friend on vacation...

I went golfing with a friend on vacation and I was really worried that I would be ok. At that stage of my recovery it was very difficult to play golf because of my vertigo issues and all the various difficulties I had....

I made it through golf just fine and when I went up to my hotel room I was afraid to lie down to rest.

Afraid I would have a dizzy attack and be all by myself and freak out.

So, I paced the hotel room for awhile , did deep breathing and waited until I was sure I could lie down for a bit.

Crazy days.

My husband knew, but really nobody else knew how difficult it was...

My Grama use to say that everybody has their

My Grama use to say that everybody has their peckel, which means their own grief to carry throughout their lives. No body gets through without something to carry. Well, this is my peckel . One that I hadn't expected, but who knew "It" was coming. I will do my very best to fight with courage, bravery and humor as I carry my peckel the rest of my days. I will work on visualizing healing it with my own willfullness....

Thanks, Grama for explaining it to me.

Lord knows you had your own peckel and demonstrated how to cope as my role model.

I think of you and my Mother pushing me on daily...

My husband is...

My husband is so supportive-- I can only imagine how hard it is for him.

I can't do as much as I use to, I slow down the pace.

Sometimes I just push on through on the weekend and then catch up on Monday by resting.

I couldn't manage without his loving support and his medical advice to keep trying different things or different ways.

Just keep trying, Nicki....

Remembering those who never compalined...

Remembering those who never complained and were dealt stiff blows in their lives helps me to cope with my issues. My mother's Cousin Teda who had polio comes to mind. She spent a lot of her childhood in bed, didn't get to play like the other kids. She walked with a limp her whole life and was very much discriminated against because she had a disability. I am not sure of the story, but since she had this disability she was fixed up to marry a man who had issues too. But, Teda make her life into merry, making her lemons into lemonade.

In later years, she lost her son in his 30s, a man with a young family and his whole life a head of him.

She carried on.

When I think of Teda, I think of someone who always faced whatever life through at her, never complaining, always joyful for you.

Thanks, Teda. You are one of my wonderful role models to guide me through my life.

When I take my glasses off sometimes....

When I take my glasses off sometimes it reminds me of seeing the piles of glasses that the Nazis collected from my people as they waited to be gassed or sent to work details during WW2.

How cruel, how inhumane.

If I had to give up my glasses when I am so dependent on them, how dehumanizing.

How difficult to see, not that you wanted to see....

Could this have possibly been done to humans by other humans?

I can't always find the Tawanda in me...

I can't always find the Tawanda in me. I saw a movie years ago called Fried Green Tomatoes and the middle aged women turns from meek and mild mannered into a Tawanda kind of girl.

No longer afraid of conquering her fears, opening herself up to making the most of her life.

I believe in this philosophy, but I can't always find the Tawanda in me...

My eyes have seen...

My eyes are multi-talented...

Sometimes they are prism eyes, some times kaleidoscope eyes, blurry, double, dance, jump.

They also like to converge for fun, ghost images.

They are multi-tasking all the time.

Well, maybe they are ballerina eyes, twisting , turning, spinning.

I just follow their lead .

Just thankful that I can see. Even though it might be what I call sometimes as creative seeing.

It works.

Thank you G-d....

I think I invented twittering!

Since my left eye twitters all the time and my right ear has ringing in it the only thing I can do is joke about.

So, I decided to tell everyone that I invented twittering way before those computer geeks did.

I also receive Morse code from my right ear , not all the time, but a lot of the times!

Humor, you are my friend!

I bought a CD of Blind Boys of Alabama

I bought a CD of the Blind Boys of Alabama. I heard them on National Public Radio the other day and found them to be so inspiring.

If they can cope with total blindness and make their lives worthwhile, I can certainly cope with this!

As long as I have some hope from the Blind BOys!

I went to a party saturday night

I went to a party sat night and saw some of our favorite out of town cousins. They were a bit shocked to see me with my eye patch and had just learned of my newest brain bleed. It is the first time in my life when you understand how people feel when you are "different?" They feel sorry for you, they don't know what they should do about their feelings and what to say to you.

One never thinks or is ready to be "different"...

You appreciate their concern and want them to be concerned, but, you are wishing it was somebody else. How could it possible be me? I'm too young is a popular answer, well, you are never too young.

How could it possibly be me?

Disabled?

Dis?

I'm living Harry Potter's life....

Who knew I would be living Harry Potter's life-flying through walls, the steps suddenly moving, etc.

I hadn't really planned on it, it is certainly not feelings that I enjoy.

Maybe if I had the magic skills to go along with it I would be having a good time!

Moshe Dayan wore a patch and he led an army...

Sometimes when I get frustrated about wearing a patch I think about Moshe Dayan.

He was a general in the Israeli army , leader of an army and wearer of an eye patch.

If he could lead an army wearing an eye patch, I can certainly cope with my days!

If I'm a good girl....

If I am a good girl and moderate my activities, patch a lot during the day, take a nap I have much better days.

If I try to do more in a day there is always a price to pay....

Am I going to patch my eye forever?

When I had my first brain bleed I was blessed with not understanding what it would entail.

I only had to wear a patch for about 2 years and then I was finished with it.

I am not in my fifth year and had another brain bleed and now have nystagmus, meaning my eyes don't work together.

The patch gives me much wanted relief.

But, am I going to be wearing a patch for the rest of my life?

Yesterday I felt like I was dying...

Yesterday I felt like I was dying.... I got too hot, it was 90 and humid and I stayed too long at the pool. The rest of the day I felt pretty awful. Tried to rest, but the mind wanders, did you ever notice that?

I got up around 3:30PM and went to do an errand, feeling worse with those awful thoughts multiplying. Feeling dreadful.

So, I took my meds a little earlier and dragged througb the rest of the day.

Tomorrow, I promise myself I will take it easy because I know I always feel better when I slow down.

Body armour

Body armor helps a lot.

A nervous laugh when I describe it, denial, I'm ok, sarcasm, acerbic at times, make jokes about it,

bargain with G-d (could I have the night off), listen to comedians, I pretend for some people because that is all they want to hear (can't blame them, they are trying to live their lives).

I can't do things I use to do....

I can't do things I use to do...

I am thankful for what I can do, but your memory always wants to go back to the things you could do:

stay awake all day, read, golf, work without a partner, better concentration, not feel dizzy,

not have to plan my day so I won't do too much, any eye issues, wear a patch, talk to a doctor about brain surgery, having permanent damage and fear of more.

I now have a chronic condition that I will have for the rest of my life.

I remember when I would wake up everyday, feel great, not even think that this would happen to me. Who does.

I write these things not to scare you , but to process for myself.

I do embrace my weaknesses. Most of the time.

I do hate it some of the time.

I can't take the heat so I will stay out of the kitchen...

I can't take the heat so I will stay out of the kitchen. I now find that I can't take the humidity anymore on really hot days. I use to think nothing of going to art shows, farmer's markets, summertime festivals. I'm afraid those days are over. I can go for about an hour, must be completely hydrated, hat, sunglasses, etc.

Life is changing.

What my second brain bleed caused...

I now have INO which means Internuclear ophalmoplegia. It is a medical sign indicative of a particular cause of extrocular muscle weakness. It can affect either one or both eyes. It is a disorder of conjugate lateral gaze in which the affected eye shows impariment of adduction. When the partner eye is abducted, it diverges from the affected eye. THis produced horizontal diplopia. That is, if the right eye is affected the patient will "see double" when looking to the left and the images will be side by side. During extreme abduction, compensatory nystagmus can be seen in the partner eye. Convergence is generally preserved.

Daily life issues

Fusion problems, diplopia

Often refocusing my vision

My left eye closes a lot as a defence mechanism

Peripheral vision weak, especially to the left

reading weak, get dizzy, headaches, loss of concentration

Fuzzy vision sometimes

right ear rings

left eye twitters ( I have been twittering way before the rest of you)!

Tired easily from all the extra effort to get through the day

The eyes have it!

My eyes do their own dance and the rest of my body must follow. My eyes do not work in harmony and I also think my eyes and ears aren't quite in harmony either.

So, my eyes do their dance and I must follow and adjust to the way they work.

I am beyond thankful that I have sight, but I must adjust to the dance.

I guess it is like when in Rome...

So, thankyou eyes for working, but it would be nice if weren't always so hard to follow your lead.

After you have an episode....

After you have an episode of spinning, feeling so dizzy, feeling like you are flying through the walls , and your body calms down. It usually takes me at least an hour, just saying it's over, it's over I get what I call internal aftershocks. It felt like an earthquake which is bad enough, and then the internal aftershocks are all those negative thoughts. What if I had fallen down the stairs, what if I were to hit my head on something, what if, what if.

Well, after you have had several of them, you learn to get to that acceptance stage. It's alright. It's over, you survived.

It is amazing what your body and mind can adapt too.

In the first 3 years...

In the first 3 years I felt like someone had punched my lights out, it was like having the birds flying around your head in a cartoon. when I sat down sometimes I would feel like I was falling into the table, or flying through the wall and the wall was coming back at me. I guess it was like living a psychedelic experience all the time.

When I was growing up I never liked the sensation of a ferris wheel or a merry go round like the other kids. My body was letting me know that this was not for me. I had my first brain bleed at 10 and had no idea what had happened to me. But, my body was always trying to protect me, to avoid situations that my body was not interested in handling.

Thanks, body!

The first 3 years...

Living in a topsy turvey world...

I am living in a Topsy turvy world... Sometimes I try to remember my old world, and then I realize that is no longer my world. Sometimes I can laugh, sometimes I go fetal...

It reminds me of Mr. Magoo as a child. He was always all over the place, not sure where he is going, bumping into things, running, always a bit crazy.

I think I am now Mrs. Magoo!

Tincture of time....

When I first went to the doc and was diagnosed with a cavernous angioma I was told that the cure was the tincture of time and tranqs to help you cope with the discomfort of the double vision, the vertigo, the feeling of flying through falls etc.

Little did I know at that time that the tincture of time has now put me up to 5 1/2 years. I really thought 6 mo.s and I would be done.

In many ways, it was better to think that way to get through those first 6mo.s to a year. Otherwise I am not sure if I would have been able to cope.

But now I am at 5 1/2 years and have had another brain bleed which has complicated my situation in different ways. I am better from the initial bleed and now frustrated with my new issue of BINO, nystagmus. Basically, the problem is my eyes are moving all the time , but not in harmony.

I have dancing eyes and I have to follow the leader for the rest of my life.

It should be interesting!

Happy 4th of July...

It's the 4th of July. We had friends over for supper and then had plans to go to the fireworks. But, I am exhausted, feeling depressed, feeling robbed of life. All those good thoughts of coping sometimes just leave me.... I can be strong a lot of the time, but then I get tired of being strong. It does get to you.

Skipped the fireworks and rallied to go to a friends house for a dessert party. But ya know when you are different, ya know when you are no longer like these other people, ya know that most of them are not going to get it no matter how long you explain ( if they even want to try to understant).

My dance of life is know dictated by my eyes who now direct the dance. Sometimes we flow, sometimes we are doing the watusi. I just follow my dancing partner.... The eyes have it....

It's been awhile since you've heard from me....

It's been awhile since you've heard from me... My father has had pneumonia, been busy taking care of him. Very stressful.

But, I have so much to say.

but tonight I only have some humor for you.

I now realize why Popeye always had one eye closed. He must have had a brain bleed. I am so sorry I did not understand that when I was younger.

And poor Mr. Magoo. Bumping into shelves, falling all over the place. I get it!

I am Mr. Magoo and Popeye all rolled into one.

Awful Thoughts...

I finally went to have another MRI, I had put it off since I first had one when I had my brain bleed 5 1/2 years ago. I finally was persuaded by my docs to have another one, deep down in my heart I feared it had bled again.

It did.

Awful thoughts start- fear, death, the end,pouding heart, you name it.

My husband was by my side to hold me up, lift my spirits, hold me close. Comfort me.

For better or for worse...

Awful thoughts...

Things I do to help me ...

I use a light machine which helps to retrain my eyes to work together. I have nystagmus which means my eyes don't turn together with explains why I get tired, have difficulty reading, etc.

I use the light machine everyday which is helping to retrain my brain to get my eyes to work together.

I go to tai chi class to work on my breathing to keep me calm.

I try to exercise to keep me active.

I have gone for therapy as needed to cope with my new life.

I use ear plugs if I am in a noisy place,

I use a visor to keep the sun out of my eyes.

I sometimes patch my eye if I really am losing it , feeling to dizzy.

I try different doctors and physical therapists and any out of the box therapy I can find or am recommened too.

I sing.

I listen to books on tape.

I don't even try to do things that I know can know longer work for me and thank G-d that I can do the things I can do and live the life that I live.

I have glasses with prisms in them to help the direction of the light hitting my eyes.

I write in my blog.

I stare at my thumb if I am really dizzy and breathe deeply.

I meditate.

I have started to pray.

I am going to try a shaman.

I thank G-d for the MRI machine which allows me to KNOW what I have. To think that people didn't know what they had years ago grieves me.

I rest every afternoon which sometimes I resent and other times I know this is ok.

Live your life not your weakness

Life your life not your weakness are words that my son James taught me to help guide me through my recovery. I try to remember this when I am feeling down and frustrated or sad. I also have tried to embrace my weakness by using humor, laughing at myself, laughing at it , saying G-d give me more and I will handle that too, having support from others, helping others, praying for others.

One afternoon the carousel started up again

One afternoon I was at home and the carousel started up again. I was doing pretty well, having less and less vertigo and then around 4PM the room started spinnng. I was worried about hitting my head into the coffee table, and losing my ability to cope so I asked my neighbors to come over and sit with me. Janie held my hand to comfort me and to hold me so I couldn't hurt myself. Bill sat by us too worrying about me, thinking to call 911. I told them that was not necessary, just to be there and stay with me until it passed. I knew I was freaking them out so I calmed their worries too.

After awhile it passed and then it takes me awhile to recover from the episode which usually leads to a little depression. Then, it's on with the day.

Went out to dinner with new friends last nigh

Last night my husband and I went out to dinner with some of his old friends from high school. I had never met them before and they asked me about what happened to me. Normally when people ask me about it they only want to listen for 2 minutes and then are ready to change the subject. But, these people actually listened and I felt like they were really feeling my story. It was a nice change. And, just sharing the story with them makes me feel better. It is amazing how that works but it is true.

Hair stylist rodeo ride

In the first year of my brain bleed, and sometimes now, going to the hair stylist was a challenge.

The bright lights, it was too hot to sit under the dryer and the real thrill was the rodeo ride on her chair. Little did she know that sometimes that chair was flipping me back or from side to side, a regular tilt a whirl. Sometimes we would have to stop for a bit until I could catch my breath. But , it is much better now.

Last night didn't feel good at all....

I felt pretty good most of the day, and then around 5PM I felt lousy and throughout the rest of the evening. Little dizzy and nauseous--

I have decided to go back for an MRI since it has been 5 1/2 years since the first one. I wonder if something has changed, another bleed, I doubt it. That darn mind sure likes to wander.

And, I keep going back to how can I live like this the rest of my life? How can I not?

I think for myself personally I am going to stick with the subconscious knowing the real truth, but on a day to day basis just give it my best shot!

Sigh....

Just saw the news about the beauty queen....

I turned on the morning news and heard about an 18 year old beauty queen from Hawaii who had a massive stroke and died. It makes me grateful to be alive . Maybe she could have lived if she had been on blood pressure medicine like I was. Maybe she could have lived if her parents had checked with a doc, but who thinks and 18 year old with a headache is going to die... I was lucky to have survived my brain bleed as a child. So, this leads me to acceptance of my condition, no longer here to fight with it, but to work with it. My job is to help educate others, help others going through it as I help myself.

This week I have been meditating, doing light therapy, taking c are of myself. Feeling more at peace with it. Laughing at it again.

I now live for that beauty queen too. May she rest easily.

That was scary!

It's spring and I just went to hit a bucket of balls for the first time. I have been golfing pretty much since I have had my brain bleed. But today, I had double vision and hit like a beginner. I wanted to cry, but the instructor told me she is teaching a blind kid how to golf and thought , how can I cry.

But why, now?

Nicki

Stayed home today

I stayed home today, only went out a little bit. I find when I stay home more I feel better. It is all the vestibular stimulation when I go out that makes the day harder. It doesn't mean that I won't continue to work and go places, it just my observation.

Had an appointment with Dr. Timothy Hain

I went to Northwestern Hospital to see Dr. Timothy Hain. He is a specialist in dizzyness/balance issues. He said that I have Internuclear opthalmoplegia. Very rare, it means that my eyes do not work together. It is a disorder of conjugate lateral gaze in which the affected eye shows impairment of adduction. When the partner eye is abducted, it diverges from the affected eye. This produces horizontal diplopia ( double vision). That is, if the right eye is affected the patient will "see double" when looking to the left and the images will be side by side. During extreme abduction, compensatory nystagmus can be seen in the partner eye. Convergence is generally preserved.

I asked him if this can be cured and he said not really. He would try to think of someone who could help me with therapy, maybe California.

For some reason, I basically knew this before. But , I really felt so depressed. Now I am a lifer, someone with a debilitating thing, that was for other people not for me. So, decided to have a few little pity parties for myself over the weekend. It's Monday morning, feeling better again, ready to charge forward once again.

Today I went to the physical therapist

Today I went to the physical therapist --we did some more vision testing and he determined I have nystagmus-my eyes are moving all the time. Also, that my eyes and ears don't work together in sync because my brain bleed happened in the pons or headquarters as I call it.

Tomorrow I am going downtown to Northwestern to see Dr. Timothy Hain, a dizzy doc specialist.

I hope to have a hearing test and take a spin in their rotational chair . Hopefully, they can fine ways to improve the quality of my life.

When I went to the physical therapist today I made him the following list of my issues and here they are:fusion problems, always refocusing my vision, reading week, tire easily, must rest everyday, get fuzzy, ear ringing, computer tough when switching constantly , I just feel like Mr. Mag00...

Thanks for listening...

Flying at the stoplight

In the first years of recovering from my brain bleed, I would have the most bizarre sensations. Sometimes when I came to a stop I would feel my first body come to a stop and then my second body would come to a completer stop. Sometimes, while waiting for the light to change, I would have an out of body experience, like I left my car and went up in the air and returned. I never drove when I felt it would be dangerous, often driving with my patch on so I could see clearly.

I would never want to jeopardize anybody's safety.

So, if you have these strange sensations, do not be surprised and be prepared.

Had a frustrating week

Not sleeping well, my eye fusion problem is scary today. So, I decided to think about what could help me . I have been reading a book call Eat, Love , Pray so I thought what has that book taught be about coping. So, I took my time this morning, did my eye exercises, listened to the book while I did breathing exercises and tried praying. This is something new for me. So, I just meditated by smiling, breathing, thinking good thoughts. Saying to myself , that I want to feel better. So, I am going to go about the day with this infusion of good thoughts and determination once again to carry on.

Watched a House episode called The Black Holeeeee

I watched an episode called The Black Hole and there was one scene that best described whenI had my bran bleed. The patient was having an MRI and all of a sudden she flew out of the machine and was flying down a black hole. She was hanging on for dear life. For all times I have tried to describe it, this was the best portrayal of what it was like for me.

I went to see a performance downtown

Went with some friends to see a comedian in downtown Chicago. This is something that I couldn't even attempt before.

Unfortunately, it was hard to look at the comedian and really enjoy it. The lights, the noise, I didn't quite know where to focus. I tried looking at the back of the chair for awhile, that didn't work, I tried breathing, patching my eye.

Overall, just plain old uncomfortable.

But, I was there.

And, I knew I could get through it and that was good enough for me.

Sensations I have felt during this process

The following are sensations I have felt during my recovery:

Here is one example of what happened to me during my recovery. I decided to go to my first party. I had a great time while I was there, did some karaoke, enjoyed dinner, I was a little concerned but I seemed ok. I got home, told my husband what a good time I had and jumped into bed. All of sudden I felt the sensation of flying through the wall and that the wall was flying at me. My husband just held me until the blessed "episode" passed. After it happened my heart was pounding so hard and my fear factor was off the chart, I was afraid to move at all for at least an hour. I went fetal, just trying to regain my composure. I had experienced "episodes" like this many times before, but when it happens it effects your confidence to face the next day. I stayed home most of the next day, relied on humor to get me through, made jokes about flying on the ground, etc.

It is amazing what you can get through. For a girl who doesn't like to fly in a plane, all of a sudden I was flying in my own bed!

Couldn't have survived without my husband...

This blog is about how I couldn't have survived this ordeal without my strongest supporter, my husband. The year was 2004 and my husband had just lost his Mother in June. It was a very stressful time and we were so looking forward to going on vacation with friends in December. We had everything all packed and ready to go the week before the trip. I planned a little Birthday party for him on December 17 as we were leaving the next day. But, the brain bleed/stroke took place on December 16. Our children were able to go with out friends and the two of us spent the next week in this bizarre odyssey- learning of brain bleeds, double vision, severe vertigo, questioning my future and what our future lives would look like. But basically, it was plain old fear coupled with disappointment which stared us in the face everyday. I have tried to express to him many times how I could not have endured this without his strength and perserverence, but there are not words. But thank you , Ken. Little did we know that it was going to be a long road back now being at the 5 year mark. My husband had to pick up most of the slack, there were so many things I could no longer do. But, the whole point of this blog is to tell you the reality of my experience, hence you will hear the whole story.

My friend Faye

Faye came over all the time, always bringing me food, always cheerful, sometimes just sitting on the couch and she would watch me sleep.Faye and I are both products of strong family bonds. We worry about our children's generation and that we know how different things will probably be. I am sure our parents said the same things about us. They might live far away, but not feel the same way we do about family traditions. But we have each other. Faye and I.

The first weeks of my brain blog

Now I have a diagnosis, have the privilege of understanding what happened to me. At first the doc said it would be 6 months , s0 I thought I would survive 6 months and then back to the old me.

Most of my time was spent sleeping, venturing out a little bit with friends and my husband. It was like learning life all over again. My first trip to the grocery store was freaky--noisy, too much light and worst of all I felt like an invalid. Needing help to walk in case I lost my balance. Having difficulty reading labels. After several weeks I tried going to the health club which was totally scary-- when I walked in I wanted to go home. My husband helped me to conquer the fear of being there and I just sat on a bike just to get the feel of it. I was really scared. Couldn't wait to come home. Some friends would come over for dinner or bring meals, or just sit with me while I slept.

There were some very special people who were there for me constantly and I will never forget those days. Going out to dinner was extremely difficult, the noise , the lights. Our friends got use to go to the early bird special if you wanted to eat with us . Too noisy otherwise. After the first month I went back to work. Going back to work was the equivalent of just sitting there and listening to other people interact. I was just really pretending...But, my biggest fear was the fear of becoming full of fear-- I had to go and do no matter what. I couldn't let myself give in to IT.

Got Brain Bleed, Video Blog 2

http://www.youtube.com/watch?v=3FK7KclbfPs

Revised version of blog 1

http://www.youtube.com/watch?v=H80bhwKLvwk

When I was younger

When I was a child , maybe 10 years-old, I would wake up having what I thought were nightmares.I felt like I was falling, screaming , scratching the falls,bumping things off the walls. My sister would get up with me to help calm me down and we would often go to the kitchen. In the kitchen she would make me a magical drink to put me back to sleep. A fizzy. How often it happened, I do not remember. And, it wasn't until the doc prodded me about my new brain bleed and that it must of happened before, it came pouring out.
It also explains why I had a huge fear of being dizzy, hated merry go round rides, ferris wheels, couldn't learn to dive, somersaults, flying. In someways it was a relief to understand those fears I had carried with me all my life. Thank heavens my parents did not take me to the doctor. This was before MRI machines and who knows what they could have tried to do with me.

Continuing my brain bleed event

The next day I went to see an eye doctor who was a friend of ours who knew something was terribly wrong. He sent me for an MRI, this time I was going to do it because they were going to drug me enough so I could tolerate being in the tube. I was also referred to see a neuro-opthamologist which I had never heard of before. It was right before XMAS and he managed to fit me in -- he read my MRI and knew exactly what it was that I had. A cavernous angioma. My life would never be the same. He mentioned to me that there was scar tissue in the same spot where this new ocurrence had happened. I of course said no, way. He said, yes, way... He asked me to describe what happened the other day and then of course, I remembered it all. It was in my childhood. I will explain that to you next time.

How it all started

This blog is designed to help me process the last 5 years of my life. It started on Dec. 16,2004 with a cold. I stayed home because I had a cold and was just laying in bed and all of sudden it started. How to describe it? I flew to the floor, tried hanging on to the legs of the bed because the floor had fallen out from under me. The room was spinning and it felt like I was spinning down a toilet bowl. I didn't scream because it was so foregin to me. I just wanted to live through it. Thought I was dying, thought of Sanford and Son, that my time had come. I crawled, I had double vision, my heart raced. I will write more about it next time. Nicki

My First Video Blog

http://www.youtube.com/watch?v=nFDSS-nkT1c

please check it out :)