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....