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.