Since I went to the new shrink and told him...

Since I went to the new shrink and I told him that I can be sound asleep and wake up flying faster than a speeding b ullet I have gone a month without spinning out of bed. He suggested that I take one xanax at bed time and that seems to calm my brain down enough so I have gone a WHOLE MONTH with out my spinning episodes...
What a treat to go to bed and not FEAR waking up to the flying through the walls, the not feeling my body, scared out of my mind.
I am thank ful for every new pice that I get in my journey back to as much wholeness I can get out of my life.
It still amazes me that when I try to describe my flying episodes that most people can't imagine the sensation my brain is sending out to me.
I don't know how I have survived so many episodes of this sensation.
I mostly have to say THANK YOU to my husband for helping me when it happens.
He holds me tight until it passes and then I have to calm down for an hour.
Then , it is back to sleep...

Yes I can't...

When I was in college I remember reading a book about Sammy Davis Jr. called Yes I Can.... The book always inspired me after reading about the racial prejudices he endured in the army and the 50s and 60s...
Chapter after chapter he kept believing that he could overcome anything, thus the title of his book was "Yes, I Can"...

But , honestly, I think I would title my book Yes, I can't .... Meaning I will always say yes, but a lot of times my willpower is saying NO, not one more day...

But, deep down I know Sammy is right, it has to be Yes, I  Can everyday...

Thank you, Sammy....

Making a paradigm shift to acceptance....

Making a paradigm shift to acceptance. I know there is one thing that will help me. Helping others will help me get better. I was use to always playing that role, I don't like being the one who needs help, support, hand holding.... It makes me feel old, needy, so many reasons to have bad feelings....
I will work on it...
I feel crappy...
Helping others is the only answer...

I keep running to docs for ansers...

I keep running to different dos looking for answers, always asking why don't I feel good. Why do I still feel dizzy? The last doc I saw said I need to work on acceptance, stop waiting for miracles. FOcus onla therpy andmeditation.... Easier said than done. 

I will try.

But, tonight I feel dizzy....

Today is another day in this long journey I am on...

Today is another day in this long journey that I am on and I just don't feel good.

Who wants to listen. . Who wants to hear again and again that I don't feel good....

I swam in the morning, rested in the afternoon and then DRAGGED myself to the store for some groceries....

This is one of those days that I just want to cry....

Can I take this again and again and again...

One of the most frustrating parts of a serious...

One of the most frustrating parts of a serious illness is trying to coordiate all the different docs and their specialties...

It takes so many different appt.s , so many different opinions, coordinating one doc to the other.

I am sure in years to come that technology will improve these issues...

Meanwhile,, you end up explaining over and over again, to a new doc because you are searching for new answers...

Just make sure you keep track of all your records.

You must be beyond diligent and make sure you get copies of everything you get.

We went to Madison for the weekend...

We went to Madison for the weekend and I was sooooooooooooo car sick for most of the ride. I will have to ask my dizzy doctor if I can take something for it. I use to take something, but I didn't think I needed it anymore. Wrong....

Nothing like a refresher course in nausea and the dry heaves to refresh your memory!

I am feeling so good about having the eye surgery....

I am feeling so good about having the surgery done.

I was afraid that I would have a spin, or not be able to lay flat on the table.

But , all was well...

Unfortunately, I had another spin last night.

Why?

I worked hard on breathing through it, not fearing it as much, trying to remain calm.

My husband was there to hold me fortunately.

I hate it. I want to stop having these attacks.

I am sound asleep and I wake up flying faster than a speeding bullet.... You can tell the generation I came from. I don't want to be Superman or Supergirl. I want to sleep peacefully and not fear going to bed at night as I will tonight...

Today I am having eye surgery...8/28/12

Today I am having eye surgery to repair some of the collateral damage from my brain surgery.

My left eye does not blink , so I have to tape it every 2 hours, and put tear drops in my eye every two hours...

The doctor put a tiny gold ball under my eye lid so my eye can blink , can sleep at night without taping it and hopefully won't have to tape it as much....

I was so nervous about the surgery since my last surgery was the brain surgery. I was still fighting damage control from the brain surgery as I have mentioned before in my book...

But, I picked the right doc and the staff was perfect.

I had the twilight meds which made the surgery painless and I was awake while the procedure was being done! Amazing!

I was talking to the doc and the anesthetist during the surgery, simply amazing...

What a relief to have the surgery done.

I am black and blue for now, looking forward to how this will improve the quality of my life...

After seeing my new shrink, I started taking....

After seeing my new shrink, I started taking my increase in meds... For the very first time, I overdosed myself for 4 days... No wonder I didn't feel good, but at least I realized what I had done and got back on schedule..

Goo0d thing I noticed because I am having eye surgery next week...

Switched to a new shrink...

Switched to a new shrink, my previous shrink retired, or I wore him out!!!!The most amazing thing about my visit with my new doc was the amount of empathy he gave me for what I have endured with a brave face...

He just kept saying wow, and wow, and wow.

He read about my surgery , he listened, he felt my pain which brought me to tears...

Usually, I can get by without tears after all these years.

So, he changed my drugs a bit and we will see...

And, I had another spin in the middle of the night.... Awful...

After Monday night's spin I am determined to...

After Monday night's spin I am determined to find out why this is happening. I made a phone call to a friend who is a neurologist/epilepsy specialist. Who reassured me that what is causing it is nerve damage from my brain bleed/stoke. And, the reason it happens at night is positional, that if I don't keep my head elevated enough that I can start spinning. I have to make sure that I am propped up enough so I won't slide down while I am sleeping. Gee, I wonder if they sell seatbelts for beds?

How come no one ever explained that to me before???

I can cope so much better when I know what it is......

I have been spinning out of bed again lately.....

I have been spinning out of bed again lately. It is soooooooo frightening I can't begin to describe the sensation. My husband holds me until it pasts which helps me feel not as scared and to protect me from hurting myself. My husband thought I was done and got up to go to the bathroom and bam, I started flying down to the center of the earth. I crashed to the floor and hung on to the bed.

He came back and helped to calm me down. I am panting and can't move because I still am spinning. Like aftershocks.

It can make you crazy.

THen, I am afraid to go to sleep at night for awhile and have to take half a xanax until I finish licking my wounds.

Awful.

I talked to my friend the other day....

I talked to my friend the other day and she told me about plans for her block party with her neighbor. They planned to get it organized when my friend got back from out of town. When my friend got back she found out that the 48yr. old woman had died of a brain aneurysm....

Itis so easy for me to forget how lucky I am to be alive.

Spin City hits again....

Spin City hits again. I was so sure I was done with my midnight rides , being thrown out of my bed. But, last night.

I was sound asleep and all of a sudden I started spinning....

As I am typing this I just had another tiny one.

For all the times I have had spins , you would think you would imporive with spin management, but no.

It was awful.

It stopped and then my husband went to the bathroom and it happened again.

This time I was thrown out of bed like I was dropped off a cliff.

Horrible.

It took several hours before I could get back in bed.

Then, still dizzy for awhile .

Then, the depression starts....

Saying your peace....

Saying your peace.... It has been almost a year and a half since my surgery. Some of my friends never got around to seeing me. Too busy. Too scared to see me. Too whatever their reasons may be.

I was mostly strongly through my darkest hours with the support of my husband and some dear friends. But, now that I am better I have chosen to get some therapy to work through my long and arduous journey.

Some people I don't bother to tell them how I feel, some people I have talked to them and told them I was disappointed.

The best attitude is too except our new society and that things are not like when my parents where raising us.

Mostly, I am grateful for the support that I have gotten and that my life was spared.

Time to lean forward.

This experience of having a brain bleed....

This experience of having a brain bleed has not exactly been like from here to eternity, it is more like from to hell and back....
I can never,never describe how frightening it is. Nothing is worse than being out of control...
No wonder I always had a fear of being dizzy my whole life since my first spin started as a child... I can still picture it,screaming and knocking pictures off the wall... Fear...

When I think how important vision is I can't stop...

When I think how important vision is I can't help myself and think of the Holocaust.

How my people or any people had to suffer the humiliation of taking their glasses off.

And, this was just one of the humiliations and sufferings of the concentration camps.

I have read extensively about the camps and have seen pictures of piles and piles of glasses.

I appreciate that I live in a free country, that I have glasses and how important glasses are to those of us who cannot see without them.

And I am sad for people who don't have the glasses they need today . I can't imagine trying to manage without my glasses.

I am not disabled, or an invalid....

I am not disabled, or an invalid, or handicapped. I am a Special Limited Edition.

Gosh, whoever came up with these words were not being very kind to people with special needs.

Can't we come up with some new meaningful words?

French Lick, Indiana

When I was in the rehab center in Chicago , they were constantly testing me to see if my brain was on the right radio station. Always asking me my name, telling me a letter and asking me to name a state or city, etc. So, one day I got an F and the therapist couldn't think of anything. So, I said French Lick, Indiana . Boy, was she surprised that I pulled that one out of my hat.

Honestly, I always remember that wacky town's name thanks to Larry Bird. Coincidentally, it is not like I know a lot of basketball players, but I will never forget that Larry is from French Lick, In.

I was finally able to go to a big dinner....

I was finally able to go to a big dinner at the Synagogue in memory of someone I was quite fond of.

I felt like a duckling learning to fall into the pond and learning to swim again. Awkward, unsure.

You know people are wondering what the hell happened to her. Some to uncertain to ask. Some who are just to busy with their lives to want to spend the time to find out.

When I was younger I use to be a big Barbara Streisand fan and one song always sticks in my mind. Nobody knows you when you are down and out. So true for a lot of people. So not true for those special people who never stopped helping me or encouraging me for one second.

Besides, you just get overly sensitive.

I think it is part of the post traumatic stress syndrome. A little paranoid, a new member of a group you hadn't planned on joining, a little bit of the rip van wrinkle syndrome of missing out on a lot of time that you don't know where it went too.

I would recommend to fellow patients to wear...

I would recommend to fellow patients to wear a medical tag so people will know that you need special attending for falls, etc.

Also, if you are driving and pulled over since the police might question why you don't walk so straight without taking one sip of a drink.

This is the first time in 7 years that I was able...

This is the first time in 7 years that I was able to have Passover at my home. Of course, let's not forget I needed a lot of help. When I am working in the kitchen I have to patch one eye to do kitchen work , needless to say I still get tired easily. So, nothing like a little help from the phone book.

The best part for me was to open the drawers and cabinets, take my china out and set the table for the holiday. Warm memories return to me of setting the table with my grandmother and mother.

Hearing the racket in the kitchen, the last minute hurrying to get everything ready on time. And, then the guests arrive and the house is filled with a warm and happy glow of family and friends.

Walking into turbulence...

Walking into turbulence.... Little spins, turning my head, pain in my head, trying to lay down, walking into crowds, going to an exhibit...
Still hoping to be done, but still walking into turbulence....

The rest of my life I plan to do Tikkun Olam...

The rest of my life I plan to do Tikkun Olam , which means to help repair the world from the Hebrew.
I was granted the opportunity to survive brain surgery in the brain stem, the very worst location. I survived due to the invention of the MRI and doctors who spend their lives studying how to perform this surgery. I am really a pioneer woman. Probably one in the first decade to be saved by this surgical procedure.
Now, it is my chance to help others with all the emotional trauma that accompanies going through having this medical condition....

Sometimes I feel so sorry for myself, knowing I

Sometimes I feel so sorry for myself, knowing I will never live like I had lived...
But, when I have my pity parties I always remember to bring a balloon....

I tried my first ballet ....

I tried my first ballet while visiting in New York. My friend's daughter was performing and I was looking forward to seeing it, but anxious about how I would handle it. I closed my eyes as much as possible, trying to just look at my friend's daughter, glimpsing now and then. After the performance as soon as we hit the hallway I knew I was in trouble.
I sat for awhile trying to do my deep breathing, took a pill and tried to Zen. After awhile I was able to go outside and the fresh air was helpful.
After about an hour I was ready to take a cab back to the hotel.
There was no going out to dinner for me.
I stayed to rest while everyone else went out for dinner.
Eventually, I felt better.
Disappointed that I still have to battle with vestibular stimulation...
But, it is my way of life.

Playing cards, scrabble, sodoku.

Playing cards, scrabble, sudoko, these are games that are often suggested to me for activities...

I know people mean well but thses are very hard for me to do because of my jumping vision, and a lot of eye movement makes me dizzy.

I can listen to books on tape, tv, visitors....

Opps, did I mention the hearing problem too?

Hearing problems.... After having the major brain bleed I couldn't stand any noise. Restaurants, movies, weddings, any occasion was very hard to take. I usually had to leave because of the noise being too loud.

Then, I developed Tinnitus. It is like having the tv on too loud and it is right in your ear. It is enough to drive you crazy. After I had my surgery, I was blessed with it going away. I think my body was letting me know how much pain it was in. What a relief.

I had ear plugs made for me so I can wear them in any noisy situation. They have given me much relief...

Opps, did I mention the hearing problem too?

Who knew blinking was such a big deal...

Who knew blinking was suck a big deal. After my surgery my left eye could not blink anymore.

Anyone care for a staring contest?

Because it does not blink I have to use eye drops every 2 hr.s and patch it too. This is to protect the cornea from drying out.

I plan to have surgery sometime this summer so they can put a gold weight in my eye lid to make my eye blink. Amazing!

I will still have to patch forever because my eyes have the lag and it makes me dizzy to use both eyes for very long.

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

Oh, when I mentioned I feel like an 80 year old...

oops, when I mentioned I feel like an 80 year old did I mention that I can't read a book anymore.

I can read a little but I get dizzy pretty quick because my eyes have a lag, they don't work together. Double Vision.

When I first heard the song called Double Vision when I was in my 20's I really liked it.

Not so much anymore...

Be careful about suggestions from doctors...

Be careful about suggestions from doctors.. Always get other opinions, blog with other people who have your issues, be patient with your issues because rushing through them is always a bad idea. Hunt on the internet, try alternative methods after researching them like acupuncture...

Don't jump. Contemplate first.

I'm like an 80 year old...

I'm like an 80 year old and I am 58. Can't drive at night, can only drive locally since I can only drive with one eye, I can't do many sports, I miss golf, hard to travel since I get tired easily, hard to walk for long because of my balance and I suffer from vestibular stimulation problems so I get nauseous, hard to turn my head, can't lay flat, hard to turn left, I could go on.

I am sorry this book is not written in perfect order...

I am sorry this book is not written in perfect order... It was designed that way , a metaphor for how the experience felt, remembering things at different times, wanting to forget a lot of it and then you remember and you feel compelled to write about it.

It has been a life not in order so my book could not be in order...

Why old people are crabby...

Why old people are crabby is easy to explain... After being in the hospital and rehab you start to understand. You don't feel good, you have lost all your control, you can be fuzzy on time and space, you can't rest good. And what do you deal with all day? People telling you what to do. To be careful. Don't eat this, drink more water, do your exercises.... And the food is awful. And the coffee is awful. And you have to ring the buzzer to go to the bathroom. It really does a lot for the ego....

That is why old people get crabby.

Oh, let's not forget. Everyone is telling you to feel better soon. Oh, yeah....

Everytime I swim I am reminded that...

Everytime I swim I am reminded that my body works, my legs , my arms, my brain is coordiated to work in sync.

NOt everyone who has my surgery gets to live to say that, or if they do live, their body may not be working in sync.

Thankyou G-d.

Why old people are so crabby...

Do you know where the expression handicapped...

Do you know where the expression handicapped comes from? It means hand the cap, like asking for spare change.

Rude enough, huh?

That expression has got to go.

Going back to swimming!

Going bnack to swimming was a huge adjustment. I couldn't drive and couldn't navigate the club well without a lot of help. Everything was challenging. Getting dressed, taking a shower, walking around all the commotion, finding my locker.

It took months and months before I could manage it by myself.

When I walked I always reached for something to guide me.

MOst people were kind and opened the door for me and made sure I was safe.

It felt like I was partially blind which I was.

When you see with only one eye it is a whole new adjustment period.

And, believe me I was happy to see with one eye.

Just to remind you, my other eye works, but together there is a lag and my eyes are always converging which is very draining.

I only keep both eyes out at home, or other safe environments.

I'm home from the Rehab Center...

I'm home from the Rehab Center. It is time for re-entry , back to the real world. A month has passed and now I am a different person. Fortunately, I had a lot of visitors who brought dinner, gifts, good cheer. I was nervous about going out to the store which was so overwhelming, eating out where people are laughing and enjoying life. What a concept. It was going to be step by step to readujust. I was using my walker around the house, started physical therapy at home, needed to be watched constantly so I wouldn't fall.

The hardest part was waking up in the middle of the night and having a spin. This happened every month for awhile. The docs told me my brain was so traumatized from the surgery that was probably the cause.

I got dizzy in the car, dizzy walking, my head wouldn't turn to the left and I could no longer lay down flat or sleep to the left.

Lots of adjustments to make!

It took me over a year before I started to really feel better and regain my strength...

Ya k now what I almost forgot to tell you?

Ya know what I almost forgot to tell you> When I had my first brain bleed, and my episodes, I couldn't imagine ever being able to manage by myself. I was afraid to be left alone. What if my husband was at work? It was really difficult in the beginning, so scared to be alone. Sometimes I called my neighbors when I was having a spin. They wanted me to go to the hospital, but I told them just to hold me, watch me until the spinning stopped.

It's been 2 weeks and it is time to go home from the rehab center....

It has been two weeks and it is time to go home. I am excited and scared to rejoin the real world.

It is Thanksgiving morning and we are going to friends fo r a lovely dinner.I don't remember much of it, but I certainly had a lot to be thankful for. Ya know what I remember? The chair.

zI received many gifts and flowers...

I treceived many gifts and flowers and calls. You have no idea how much that means to a patient. It is always nice to be thought of during dark days.

I will always remember to think of others for the rest of my life.

I thought I was pretty good at it, but it is different now.

I have crossed over to the other side and my life will never be the same.

One day in my group therapy in rehab...

One day in my group we were playing scrabble and There were only 2 of us who could make words. THe other group members were in their 20s, several with parents sitting behind them, supporting them,hping hey to could ke aword.

It take vry special people to work with recovering patients.

It just mae me want to weep.

Once you are a parent yourself, the world never quite looks the same to you.

Tonight the neighbor next door to me is weeing...

Tonight the neighbor next door to me is weeping. I asked the nurse what happened to her and she explained that her weeping was a good sign. The woman was an ambulance driver and they had been hit by a car. She was hurt very badly and couldn't communicate. Her children and husband had come to see her during the day and the children just wanted to touch her and see her.

So, the nurse said her crying was a good sign , that she was beginning to communicate again.

Her prognosis was grim, but the policy of the hospital is to hope for the miracle.

I had so much to be thankful for.

Today Iam going to learn how to get into a car....

Today I am going to practice getting into a car--notice a bit of sarcasm there? I know I should just be greatful, but I know sarcasm translates into feeling angry. I can't help but feeling angry about all this and how this all happened. When do I wake up and go back to the other Nicki?!

My Face....

My face . I had always been complimented o how pretty I was my whole life. Brown soulful eyes, a warm engaging smile. My parents and family always referred to me as the pretty one...

It is a good thing I was so drugged and could hardly see, nor did I care what I looked like now.

It was like my face had been stretched out , a little ghoulish. People were too kind to comment.

I had palsy on the left side, my eye would not close anymore, the Mrs. American Contest was not going to come calling this year.

It wouldn't be til much later that I would feel sad about that.

But, when I was aware later on, I am thankful that it didn't happen until I was older and wiser.

It's true what they say about beauty. Beauty is only skin deep. I was just happy to be alive.

I wanted to leave the Rehab Center...

I wanted to leave the Rehab Center. I didn't think about this chapter of my recovery. The hospital had said I would need about 2 weeks to recovery and back to normal. Well, if they didn't want to tell me the truth or they were afraid too. I think the shock of being in a rehab center and going through tests to see if my brain was working, physical therapy, occupational therapy, psych testing was not in my plans. A wheelchair? A walker to walk with ? My vision had gone down hill , it was like starting over again with more added to my plate.

I am thankful that they got the cavernous angioma out, but, really?

Nicki's New World now meant that I was DISABLED....

Reality Bites.

Wgat an Um 80 all of a sudden?

What am I , 80 all of a sudden? As I became a little bit more clear of the ordeal I had just been through, the realization was starting to hit me. Using a wheelcahir, a walker, not allowed out of bed by yourself, dizzy , my vision had gotten worse again from the surger, my left eye wouldn't blink so I had to constantly patch it every 2 hours, and then there was the little matter of my face.

Halloween had arrived early this year...

Everynight Melyn would come around 9PM...

Every night Melyn would come around 9PM and give me a bath since my bowels were still out of sync from the surgery. She would help me dress for bed, fight with the nurses to get my pills at a reasonable hour, comfort me.

I really suggest that you have someone there to watch you get through the long nights. Hospital care is not what it once was and I felt more secure having someone there all the time.

What a lifesaver....

Before we left California to come back to Chicago....

Before we left California to come back to Chicago my husband was smart enough to know I would need help in the Rehab Center. We called the only person we knew to call, HoneyJoy. She had taken care of my in-laws when they were dying so we knew we could trust her to help us out.

She recommended her friend Melyn who stayed with me every night in the hospital and has been taking care of me ever since. A warm and deep friendship was just beginning.

After awhile I got to go back to my room...

After awhile I got to go back to my room to rest. I couldn't wait for lunch because that is like the highlight for the afternoon since there is nothing to do. So, I pressed the button for help to go to the bathroom The guy helped me to the bathroom and then he left. After I was done I could not navigate my way out of the bathroom.
Fortunately, I had brought my phone and called my daughter in London to have her help me with my predicament. She called the front desk and then the guy came to help me roll my wheelchair out of the teeny, tiny bathroom. He was none to happy with me, but I had no idea where the string was to call for help.
Thank heavens for cell phones...

So, let the games begin....

So, let the games begin. First day is physical therapy, occupational therapy and meeting with some kind of therapist.
The instructions are to learn to negotiate the wheelchair, the            for walking , how to use the bathroom by calling for help. A millions things.
The physical therapy was quite helpful, I managed it quite well  since I really was clueless that his process was going to take awhile.
Then the O.T. came and had me TRY to read a story and answer questions.... Very difficult since I had jumping vision, my memory was on sabbatical.... I tried to the best of my ability, but it was very difficult to remember the story and to answer her questions. So, I used my normal technique of trying to distract the O.T. by asking her questions about her life, etc. But, let me tell you, these people are on to our little tricks and tried my hardest to stay focused....

When my friend Vicki picked me up at the airport....

When my friend Vicki picked us up at the airport I assumed we were going to go home. But, we were going downtown and they told me I was going to the Rehab Center of Chicago. I certainly did not have my head wrapped around that concept. I had no idea that my recovery was going to be a journey starting with the rehab.
We arrived at Rehab and taken to my room. This is when I was instructed about the wheelchair to the bathroom, that I need Physical Therapy and Occupational Therapy. I knew I needed the help, but , honestly you really don't get it.

The plane ride home was fabulous ....

The plane ride home from California was fabulous. I was so drugged I thought I was on a spaceship . It was sucha nice ride... I could smell the flowers blooming, I could hear the sprinkler watering the new spring flowers, lovely. And, I didn't have to get up to go to the bathroom because they put a cather in for me since I would not be able to get up to go to the bathroom.what a pleasure. I thought , what a great business plan. Selling catheters in the airport so everyone doesn't have to keep getting around each other on the plane. My friends think it's a bad idea. Oh, well....

Everyday was an eternity....

Everyday was an eternity in the hospital. Every hour is like 3 in the real world. It really makes me feel tremendous empathy for people who have long hospital stays, long rehab stays,long "assisted living" stays and I am going to say it. Long nursing home stays. When your life goes from a home or an apt. to assisted living to sharing a room where you stay all day on your bed and the big excitement is to sit in the chair for a little whilte.
This stuff never hits you in the way it does when you are wearing the shoes.... Heaven help us.

My girlfriend picked us up at the airport...4/24/12

My girlfriend picked us up at the airport and I was in sorry shape by then. We took a long car ride to the city instead of to home. What a surprise for me. I was going to the Rehab Institute of Chicago!

This was my first experience with being told not to leave the bed without assistance by wheelchair. Needed help to the bathroom, needed help with everything.

The next day lessons began with physical therapy, occupational therapy , etc.

I am glad my doc hadn't told me that this was a possibility or I would have freaked out.

The days were long, I felt very weak and

Time to leave Stanford for a trip back to Chicago....4/23/12

Time to leave Stanford for a trip back to Chicago. I was a little scared to leave the hospital, but ready to go home to be in my own bed.

Little did I know that I was on my way to the rehab center to regain skills that I had lost in the hospital...

The plane ride home was maybe the first time that I comprehended that I couldn't walk on my own. So many times I had been to the airport and looked at people in their wheelchairs. Well, this was going to be my first time....

The ride home was like being in a rocket ship with many beautiful gardens surrounding me. The water was on sprinkinling the grass and I thought it was so lovely.

One thing I do remember was how important...

One thing I do remember was how important it was to have my family with me all the time.

I don't know how people handle major surgeries without a lot of support. I would have been lost without them.

After a 2 weeks stay , it was finally time to go home....

I had so many different dreams...

I had so many different dreams while in the hospital. FIrst of all, I thought all of my friends and relatives were there which I thought was so thoughtful. I would wake up and tell my daughter who I had just been visiting with and she would then explain that I was just dreaming. I had very little concept of how bad my face looked, if I could think straight, that I couldn't walk or function well.

It was really a blessing that I didn't know how sick I was, or how long it was going to take me to recover.

I can't begin to imagine how hard it was for my...

I can't begin to imagine how hard it was for my husband and my kids. Long. Scary. Wondering what condition I was really going to be in. Would I be able to function again. Did I have my mind?

Would I be an invalid? How scary for them. I was out in never, never land . I was not really focusing on my future. I kept picking at my tubes... My son would try to get me to stop and I could not imagine why he wanted me to stop.....

My memories of my hospital stay are quite ...

My memories of my hospital stay are quite different than reality. I remember having all my friends and relatives there with me. I remember every night being in a different room.

I remember one night being taken outside on my hospital bed not knowing why. When it was 10:30AM in the morning I thought it was dinner time because time goes so slowly in the hospital. I just remember bigs and pieces. I do remember the occupational therapist coming in and trying to work with me. She wanted me to turn my head which was impossible. After awhile she would come in and we would just talk about her boyfriend problems. I thought she was incredibly kind since I could not move my head much at all without enormous pain and the dizzies....

My memories of the hospital are quite different...

My memories of the hospital are quite different than my family,s more accurate recollection. I
Remember being in a different room every night. I remember that one day felt like a week..
I would ask my daughter when dinner would be and she would tell me it was only morning...
I don't even remember what the doctor looked like.. I vaguely remember one physical therapist because I convinced her I wasn't capable of doing anything she wanted me too. The only good thing she did was give me a neck collar which gave me relief and I listened to her boyfriend problems! I remember being outside, I remember being in the basement,etc..
Talk about being higher than a kite...

The first night in the hospital after surgery...

The first night in the hospital after surgery was uncomfortable, sleepless and a lot of pain in my neck where the cutting took place. I asked the nurse for some meds which gave me some relief.

My husband was in my room all night to watch me. I kept trying to get out of bed and to unhook myself. I had know idea that I was doing that until months after the surgery.

Awful night.

I always tried to make the time go faster...

I always tried to make the time go faster. I would ask my daughter every morning around 10:30SAM if it was almost time for dinner. What a disappointment when she told me it was so early.

One day in a hospital is like a week in real life.]]So slow.

Alll you have to look forward to is the next meal or finding a comfortable position to rest in. Always a challenge to get comfortable.

I ended up staying in the hospital for 2 long weeks..

I ended up staying in the hospital for 2 long weeks. I was so heavily drugged that I dream t that I was in a different room every night, that one night they took me outside in my bed to take a test somewhere, that one night I was in an RV, all kinds of weird dreams....I dreamt a lot about work an d I kept telling my daughter to call work because I thought I was back home and was in the midst of a real estate deal. I asked my husband how did they let me leave the hospital when I was so sick to go back to Chicago. I asked him how we were going to get back to Stanford. I did have a good dream though, I dreambt that all my friends came with me and some came into my room to visit with me and some of them were patients in the hospital. I thought what a conincidence..

I would wake up and tell my daughter and then she broke the news to me that I was dreaming. They weren't really there.

I finally was ready to go to a room...

I was finally ready to go to my room. My husband stayed in my room all night to watch me. That's love after such an awful day. It is a good thing because I kept trying to crawl out of my bed and unhook myself from the Iv, the cathater, etc. What an awful night....

I woke up after surgery to the most frightful...

I woke up from the surgery to the most frightful times of my life. If I moved an inch I started to experience extreme vertigo. I grabbed my husband for dear life to just hang on to me until it passed. This happened over and over again. I have no idea how I coped with it...I don't know how I stayed sane. I couldn't have done it without my husband being there. It seemed like hours , I begged for something to take, but they would not give me anything since I was waking up from surgery. Then, I asked the nurse for a sip of water and she refused. She did request that I sit up so she could do the straw test and I told her there was no way I could move without going into a spin and my neck couldn't be lifted up from the bed. My surgery required cutting through the back of my neck and I was in major pain. Then, the nurse started to get testy and was insisting on my husband leaving. I told her no way and requested she call my doc and see if I had to lift my head up. She called him and he said I did not have to lift my head up. What a night.

Every time I go to the gym...

Every time I go to the gym I remember the first day back at the gym. I was nervous just walking into the gym. The bright lights, the noise.... Being around people. I just wanted to go home to my comfort zone. I was encouraged by my husband to at least sit on a machine which I eventually did. 14mo.s later and I can now drive to the gym. I mostly swim because I am not comfortable on the machines and I still can't move my head a lot. I could move my head before the surgery, but now it makes me dizzy to look to the left for very long. I can look straight somewhat, my most comfortable position is to the right...

It was time for the operation....

The morning had arrived and a calmness came over me.

I knew I would do better being calm than anxious.

My daughter had been playing the son, I can see clearly now which helped me immensely to thing of the future and of being better.

We went to the waiting room and immediately a guy said I looked scary with all thesee things sticking out of my head.

I moved away from him.

Then , I started thinking about the doc and hoping he had a good nights rest , that he was happy that the San Francisco whatevers had won the baseball tournament.

Then,they called my name and I taken to a room filled with beds and people putting on their hospital gowns for their surgeries.

The anesthesiologist came in, read my chart, and informed me that I was going to have nausea

after the 8 hr. procedure.

Thanks!

I did beg him to put me out before I was taken to the operating room and fortunately he did.

I was out.

I stayed calm getting to California for my surgery...

I stayed calm getting to California for my surgery until I go to California!!! Now, we were talking the real Mc Coy. I went through my tests, met the doc and would go back to the hotel room and I felt like my feet couldn't douch the ground My legs were swimming, I would be ok for awhile and then I would freak out.

THe night before surgery was time for the breakdown. I was so scared.

]When I woke up the next morning, I was calmed because I knew this was it.

I had to wait a week to have my surgery...

I had to wait a week to have my surgery. What a long week. People calling, most of them scaring me to death. So, I stopped answering the phone. Hiding out is good for the nerves sometimes. I kept picturing the operating table and trying to get on the table without having a heart attack.

It played over and over in my mind.

You can imagine the feeling of packing your bags to go to sunny California to have brain surgery?

I don't know how I remained so calm.

I was taken to the closest hospital...

I was taken to the closest hospital where the doc determined that I had had another bleed.

I wanted to go home because I knew I was having surgery next week.

The doc convinced me to go to NOrthwestern in downtown Chicago and that I must stay awake or maybe never wake up again.

So, I waited quite awhile before the ambulance came to take me downtown which took forever.

Then, a million tests and a million questions.

Now, I was getting scared.

I stayed 2 days and then I knew I was off to Stanford Hospital for brain surgery!@!!

It sounded so scary, I could only picture Frankenstein and the movie scenes ....

It was now or never.

The garage scene was one scary moment...

Before I had my surgery and I could tell things were getting bad again (another bleed), I had gone out for the day and had to pull over since my vision getting going out on me. But, I decided I wanted to get home and not have to ask somebody to come get me again!!!! I was about 5 miles from home and I drove one block at a time, pulled over and had to rest. I was determined to make it.

I use to take this drive home for granted, but not anymore.

I stopped and I stopped and went another block and stopped again.

Finally , I made it home.

My husband was home and I then told him how scared I was. We faced each other as we slowly walked into the house, holding me firmly so I would not fall and for reassurance.

Then, it was time to call the ambulance....

My eyes are much better now...

My eyes are much better now, but they still have what I call jumping vision. When I look at things

they kind of jump around.It sure beats double vision and it is amazing what you can adapt too.

My left eye is starting to twitter which I hope means it will start blinking again. I can see out of it, but I have to patch it every 3 hours so it won't dry out. I hope it will start working again.

My son went lugging yesterday...

My son went lugeing yesterday and I thought that is a good description of how I feel when I am flying. That fast, just not on the ground...

It has been 14mo.s since the surgery...

It's been 14 mo.s since the surgery and I have been able to enjoy swimming. It is about the only sport that I can do without turning my head which works well for me. At first I could only swim in one spot and be close to the edge... I can now swim all the way across the pool and I am starting to swim to the left half way across the pool.

It feels so good to move my body .

I look at my arms and my legs and say thank you that they work .

I always say thankyou to my brain for going through such an ordeal and that my brain is working.

I have so much to be thankful for.

Dinner at 6...

Dinner at 6...For the longest time when my husband came home i dreaded diner time. I was always tired, dinner was often poorly made ,had to turn the lights off and use candles and then the table.

I hated sitting at the table because everything about it was disconcerting for me. I felt dizzy at the table , waiting for the table to flip me over, to crash to the floor, to feel dizzy. There was something about that table.

So, often we ate on the couch!

Wanna have a starting contest with me?

Wanna have a starting contest with me? You couldn't beat me with my left eye.

It doesn't blink! Ha, ha,

You have to think it is funny or else you can go insane....

Wanna have a starting contest with me?

After having brain surgery a lot of us come out...

After having brain surgery a lot of us come out with facial paralysis.... My surgery was a year ago and it is getting much better ....I also recommend using acupuncture to help speed up the damage.

I really think it helps !

I just want to take a minute to talk about others...

I just want to take a minute to talk about other people who have suffered with brain issues as myself. Seek help from the Cavernous Angioma Society, the Stroke societies. It can happen at any age and I have read stories about young children who are suffering with these traumas, soldies who have been blown up my IUDs , Congresswoman Gabrielle Giffords who had been shot ,Senator Mark Kirk from Illinois, the star of Hercules Kevin Sorbo and the rock star Brett Michaels.

These are just a few names that I have mentioned, we are now all bonded with the suffering we have gone through.

But, thank you to the MRI machine and surgeons who are performing miracles everyday we are here.

Watch for warning signs....

Watch for warning signs such as vision issues, headaches, dizziness, anxiety attacks, high blood pressure, tendinitis, numbness, facial paralysis...

Anything unusual is your body trying to tell you we are in trouble...

After my surgery I no longer had high blood pressure, and tendinitis. I guess they were warning signs that I was missing....

How do you like this for a title of my blog/book?

Fear of Flying- Living with Vertigo....

How do you like this for a title of my blog/book?

Where does the word handicap come from?

Where does the word handicap come from? It means to hand the cap. Becasue people with disabilities were treated so poorly they were often left to the streets, put in mental wards or hidden away in the basement.

Fortunately, people with handicaps are now treated with more care and respect.

But, no surprise we still hear the words like retarded, mental case, looney.

So much is misunderstood.

I am 58 and it was not uncommom to laugh at people with disabilities.

I remember one day when the mean boys pulled down Dougie's pants so they could have a big laugh.

And now instead of getting better, the mean boys are worse than ever.

Now we have hazing and young people committing suicide because they have no one to turn too.

I hope this blog makes me people a little big more kind to their fellow human beings. It is time.

Where does the word handicap come from?

I have read a lot about the Holocaust....

I have read a lot about the Holocaust , something I will never understand about mankind. But, one picture stays in my mind. Glasses. The piles of glasses that were taken from Jewish citizens as they were forced into the concentration camps. Then, I look at my glasses and think how much I depend on them . How could they take them away? And that is just one of the small horrible things that was done by the Nazis, not to mention the endless torture and humiliation of 6 million people who called Europe their home.

Have you ever seen glasses taken away from people who rely on them to see?

Piles and piles of glasses.

Taking away their humanity away from them step by step by step.

I had a pirate party in my third year...

I had a pirate party in my 3 year after the major brain bleed....The double vision was much better even though I still needed to wear a patch and was still suffering with flying episodes, etc. But, I decided it was time to again use humor in a time of uncertainty. We had pirate decorations and passed out as many patches as I had. I always turn to humor when I am really afraid and need humor to get me through rough patches. It was great fun and little did I know that there were to be many more days ahead. I was a long way from being done with THE BRAIN BLEED , which is really a STROKE . Life was never to be the same as I knew it. I am thank ful I survived, but my life was changed for evermore.

Did I mention what blessings I got after the ....

Did I mention what blessings I got after the surgery.

NORMAL BLOOD PRESSURE

NO RINGING IN MY EARS

Two big presents and I try to remind myself often of how wonderful these gifts are.

Not to mention my life...

aone day I went golfing with Bruce before the...

One day I went golfing with my friend Bruce on a vacation. I tried to act normal, golfed ok and had a good time. The truth is my brain is going what time is your flight? When I got back to the hotel room I kept walking around, afraid to sit or lay down , fear of flying... I walked around the room for awhile, ordered room service, ate while I was walking and eventually felt confident to sit down and then lay down to rest.

If I told my friends what I was doing they could not begin to understand why or what I was doing.

You have to live it to really get it.

But, after the surgery that fear went away.

I have to pull out the Tawanda in me...

I have to pull out the Tawanda in me sometimes when I feel like I have no powers. Tawanda comes from a movie named "Fried Green Tomatoes", make sure you see it. Tawanda starts as a housewife with no powers and she learns from her yoda in the movie to find her Tawanda.

Everyone needs a Tawanda inside of them. Learn to use her as needed. She won't let you down.

The permanent roller coaster ride...

I am on the permanent roller coaster ride. It is at kiddie land speed now, but I feel motion when I l

turn my head. It can be anything I am doing and I will feel it. For instance, getting into the car , leaning over and straitening myself up can cause the motion.

Fortunately, I am having fewer and fewer high speed roller coaster ride. I use to have them anywhere and now I only have them when I am in bed sleeping. I must be lowering my head to much or trying to turn to the left which doesn't work for me , and then the ride starts. The last one I had was in December 2011,I could feel the ride starting which gave me a little warning time to arouse my husband. He put his legs around me, held my arms and off I went. I can't see anything except white and can feel the speed of the ride. No wonder I hated going fast since I was a child. Hated to go fast on anything which most children enjoyed with wild-eyed wonderment.

No frequest flyer miles on this ride.

I wonder if they make seat belts for beds???

Since I have had the surgery a year ago....

Since I had the surgery a year ago I have been left with some souvenifs. My left eye does not blink so I have to constantly patch and repatch every 3 hours. My face was distorted, but looking better, my balance is off and I have BPPV. BPPV for me means I can only turn to the right, can't look straight ahead, no peripheral vision to the left, cant look straight and can't lay flat. My doc who specializes in dizzyness thinks it is because the crystals in my ears fell out during the surgery;

I am looking into seeing what I can do about this...

I don't have to wonder what it is like to sky dive...

I don't have to wonder what it is like to sky dive, because I have been free falling for 7 years now.

I don't quite get what people see as the "Fun" of it.

Maybe because when I do it I go all the way down and back.

Oh, they probably would think that is extra exciting.

I'm a girl always on the move...

I am a girl always on the move. Even when I am sitting anywhere, I am still moving . Could be right to left, could be forward or back ward....

I am always moving.

Psychodelic double vision at my age?

Psychodelic double vision at my age? Now I know what my friends were experiencing when I was in college. And, now I have to deal with it at 58? At least my friends who were doing drugs were enjoying it , I guess. For me, it's been the ultimate nightmare.

Who knew I was going to join Circque de Soleil...

Who knew I was going to be joining the Cirque du Soleil. Because I can be sound asleep and all of a sudden start spinning so fast that I need my husband to hold on to me. Otherwise. I will fall out of bed and have to grab something , holding on for dear life. On second thought, maybe the circus freak show might have more need for me. It is quite something to see.

With the help of therapy I am getting through....

With the help of therapy I am getting through my PTSB. I am relearning how to take more control over my life after so much dependency on my husband and friends. I practice driving a little bit every day and I have a rear view mirror which is as big as a couch. I let myself try more things and know when I need to stop and rest , take a nap. It is a whole new balancing act. I have learned to forgive myself when I can't remember something that was just said or names which I was always excellent at.

I am adjusting to not going on some family trips and staying home which is much more comfortable for me. I can't walk along time, be out for endless hours, ride a bike, hike, etc. At first you feel sad for yourself, and then you are just happy to be as far as you are on the journey back to health.

Post Traumatic Stress Syndrome arrives...

Post Traumatic Stress Syndrome has arrived now that it has been a year after the surgery.

I finally get out of the red zone and then I have memories and fears of the day of the surgery and the month after surgery twirling around in my head. It is a good thing I was so drugged and didn't realize how bad my face looked. I had always been know for being a pretty girl with soulful eyes... Now my face was distorted and for the first time in my life I didn't want to be in a photograph.

G-d sure has his or her ways of keeping you humble...

It's been a year since my surgery so I decided....

It's been a year since my surgery so I decided to have a Vertigo Party. Vertigo has been such a scary thing to me I decided to look at it straight in the eye and celebrate my survival. I taped a bunch of songs like, I'm so Dizzy, Double Vision, Dizzy Miss Lizzy, Riding on a Carousel, etc.

I served eyeball punch and then we watched Vertigo. By the way, it really isn't about Vertigo, it is about a fear of heights. Vertigo must have been too hard in that genre to demonstrate on film.

It was actually a thank you party to all the special people who had helped me in the last year after surfery and also the 6 years before of life after my big mama brain bleed. As I mentioned before, I had had bleed since childhood. Good thing it didn't get worse until they invented the MRI machine and surgeries to save my life and many others....

Another new book title...

A Stroke of Luck, another new book title

How is this for a title for my book?

How is this for a title for my book? I went to Hell in a Handbag inn 60 seconds and it is 7 years later.

Or, I'm too old for psychodelic trips, I just want to stop flying without booking a reservation@