Rrr

Rrr

It will be almost three years since my surgery.

It will be almost three years since I had my surgery... I was so lucky for so many reasons.

I am not in a wheelchair, my brain works, I can walk,  my legs and arms work, I can get out, I feel like. Y soul is back

Could not have done this without my husband, my kids, dear friends, strangers on the street cheering me on, faith and I was. Also, my dear parents who always taught me to be strong and face what ever came. Y way..

I also thank my grandparent who came to this country, struggled beyond belief so I can live the life I live...that is what I call bravery...

Went to get my car fixed...

Went to get my car fixed today and heard the same old story...the customer service guy lost his brother to a brain bleed...

I hear this a lot..

How can we avoid this?! 

He had no symptoms..

How do we avoid this?!

Be sure you have someone with you in the ICU

Be sure to have someone with you in the ICU and in the hospital the whole time....First of all I want you to know I love nurses, but they want you to sit up and test your swallowing.... I could not lift my head and I was suffering from severe vertigo. My husband had them call my doc so we got permission to Not let them try to lift my head, that I could do the swallow test laying down. 

I did not feel one ounce of kindness from them,especially since I was in crisis with my severe vertigo.

The nurses were getting pretty insistent that my husband leave, so we had to call my doc again.

The whole experience was awful and I think they probably would have tried to restrain me if my husband hadn't been there. I was so freaked out and would have totally lost it without him.

They finally wheeled me out, the last to leave, dreading them moving my bed....

I will tell you about the night on my next blog....

Went on a trip with some friends...

Went on a trip with my girlfriends. I flew by myself, managed being out all day, dozing in the car or sitting when I needed a break.

It was a big accomplishment to me, vêry freeing to go , making me feel capable of doing more.

What a good feeling...

Went to see FDR and Eleanor's estate in Hyde Park...

Went to see FDR and Eleanor's estate in Hyde Park... I didn't know much about or thought how he struggled through life having polio. Having to use a wheelchair most of his life because his legs didn't work.. But that didn't stop him from being President of the United States. 

But, his disability had to remain a secret in those days so he wouldn't appear weak.

A a least today we don't have to hide our disabilities or be outcasts from society. We have laws against   against people who have e ail needs.. 

We now have facilities for wheelchairs , special building codes that make room for wheelchairs, etc..

We are making progress , but still have a long way to go....

Kim's friend....

Kim's friend...I have been swimming for years and that is where I met Kim... Early on in my recovery I was at the club just trying to adjust being there and handling getting dresses, undressed and to the pool...

Suddenly I burst into tears, grabbed her and put my arms around her sobbing.. I coped pretty well most of the time,but that day I just broke down.... She comforted me and we often talked about that day that she comforts me...

Re e fly she told me about a friend who suffered for 20 years with vertigo, often staying home, filled with fear and not living her life. I told her to get her to the Chicago Dizzyness and Hearing Clinic which changed her life through their help and diagnosis she is now living her life...

What joy it gave me that Kim and I could help this woman get back to living her life...

That makes my suffering worthwhile because I could help someone live her life....

Not having migraines anymore ...

Not having migraines anymore since I have had Botox injections... My head still hurts from the surgical procedure , but the Botox and working on range of motion is helping to ease the pain..

For range of motion I practice turning

g my body to the left and I also work on getting my head to the middle while lying flat on the floor. It still makes me dizzy but I can tolerate it for very short periods....

Big eye...

Big eye is the name I dubbed my left eye which would not close after surgery... It was also so different looking than my good eye, kind of scary. Hello, Mrs. Frankenstein ...

I had to tpe it nd then open it constantly after putting gel into the eye so it won't stop working... This was damage from the surgery which I could not imagine my face looking like that.

I was always considered good looking and now my looks would be my badge of honor....

Went to a wedding....

Went to a wedding and saw cousins who I hadn't seen in years... It was nice to be able to go since I am feeling better...

As I was talking to one of them I was told that her brother had died...I knew he was ill and had only seen in a wheelchair. I never asked why nor knew his situation very well.. Was I surprised when she told me he had died at 52 of a AVM... Wouldn't have met much too me until I had my own brain surgery for a cavernous angioma....  What he had was an arterial Venus malformation , very dangerous, very deadly. And I never even tried to speak to him or pay attention to him..

You never stop learning and I am sorry I was as uncaring as everybody I have accused of being uncaring....

The first time I walked downtown ....

The first time I walked downtown for the first time was about a year after the surgery. My husband had a conference and I decided to walk from the hotel to the Water Tower... It was a great sense of accomplishment to walk by myself through the crowds. Then, I ate lunch at the food court and cried. 

I then decided to walk back to the hotel.

My first triumph walking by myself!!!!!

Interesting Article on Hispanic and this rare genetic disease

Researchers Use Genetic History To Answer Mutation Questions

•

In the Southwest, a rare genetic disorder known as Common Hispanic Mutation has haunted those of Spanish-colonial descent for nearly 400 years. They call it El Frio or the cold. A majority of people with the disorder reside in New Mexico.

Copyright © 2013 NPR. For personal, noncommercial use only.See Terms of Use. For other uses, prior permission required.

DAVID GREENE, HOST:

In the American Southwest, a rare genetic disorder known as the Common Hispanic Mutation has haunted those of Spanish descent for nearly 400 years. It's been called "El Frio", or the cold. Now to understand the disease, researchers in New Mexico are digging into the genetic history of residents. From member station KUNM in Albuquerque, Tristan Ahtone reports.

TRISTAN AHTONE, BYLINE: Janae Jasmine Gallegos liked playing on the trampoline with her two brothers, biking, skating and cheerleading. She was nine years old when she died in Santa Fe.

TIM GALLEGOS: She had a cheeseburger at lunch, on the last day of school, and just came home feeling flu-ish and having a headache, and it just seemed like a bad cheeseburger.

AHTONE: Tim Gallegos is her father. Sandra is her mother.

SANDRA GALLEGOS: She had had headaches before and they seemed pretty bad, but when we would give her Tylenol, her headaches would go away. In the morning, when Tim got up, she wasn't responding, and we knew something was really wrong.

AHTONE: Janae had a blood clot in her brain stem, the end result of the Common Hispanic Mutation, or Cerebral Cavernous Malformation - CCM1 for short. The disease causes the body to form bubble-like blood vessels in the brain and spinal cord that often look like raspberries. They can leak blood into the brain, or swell, often leading to fatalities or serious neurological disabilities.

DR. LESLIE MORRISON: People used to call them brain tumors.

AHTONE: Dr. Leslie Morrison is director for the Cavernous Malformation clinic at the University of New Mexico. She says in the past, the disease wasn't well understood, and often misdiagnosed.

MORRISON: So we get way too many brain tumors in the family histories of patients who have this disease. Or they might say they were in a wheelchair and we never knew what caused it.

AHTONE: Morrison says those family histories may be key to understanding the disease. Much of New Mexico's Hispanic population traces its bloodlines from Spain, not from Mexico - back to conquistadors that colonized the region. The CCM1 gene occurs other places in the world, but the American Southwest is the only place where large clusters are found. That likely means that New Mexico's cluster is descended from one colonial couple.

JOYCE GONZALES: We have Juan Peres De Bustillo, and he was born in about approximately 1558 and then his wife was Maria De La Cruz, and she was born in about 1560.

AHTONE: Joyce Gonzales is an amateur genealogist who helps families trace their relationship to the disorder. She began tracking CCM1 after she was diagnosed herself. Gonzales says it's unknown whether Juan Peres De Bustillo or his wife had the mutation.

GONZALES: But what we can be certain of, is that which everone of them had it, was the first grandparent to bring it to New Mexico, and all of us here in New Mexico, southern Colorado, and eastern Arizona with the CCM1, all descend from that pair of grandparents.

AHTONE: So to map the disease, researchers have to build some very complicated family trees. By identifying descendants who may have CCM1, researchers can gather patients to study the disease and develop treatments. For the Gallegos in Santa Fe, this is very important. After losing his daughter Janae, Tim and his wife say they now feel like their racing to find help for their 11-year-old son Joel, who has also been diagnosed with CCM1.

GALLEGOS: It's just very hard living your life with a big question mark hanging over your head over the time.

AHTONE: Researchers in New Mexico currently have around 500 Cavernous Malformation patients logged in their database. However, those same researchers suspect that thousands more in the southwest have the disease, but have yet to be diagnosed. For NPR News, I'm Tristan Ahtone in Albuquerque.

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Going to the holiday party ...

Going to the holiday party was a big decision for me. I had missed the last two years since I did not do well in a crowd of people, the lights and the noise. 

So, I decided that I was we'll enough to go... I had a wonderful time at the part, had a wonderful meal ,even sang some karaoke . I came home feeling quite successful and proud of myself for going. 

I went upstairs ,changed and hopped into bed.

And then it started, the dreadful spin, feeling like I was flying faster than the speed of light, twirling and twirling.

My husband jumped out of bed and just held me until I stopped.

By this time I had fallen to the floor as if that was going to save me.

I went into the fetal position ,panting, shaking for at least an hour.

Finally , I was able to get in bed and then the second part of the episode begins

Dread, post traumatic fears, how ca. I live like this, what was I going to do?????

Kabuki theater...

Kabuki theater would describe it, being on a drug trip ( never tried), a Frankenstein movie which  you are the star of, living in a kaleidoscope world, how can I ever possibly describe it to you?!

Some people have bewitching eyes,

Some people have bewitching eyes, some people have Betty Davis eyes, but I have itching eyes....

You are gonna lose some friends...

You are gonna lose some friends and gain new friends... Some people can't deal with the new you because you can't do all the things that you use to...you can't blame them, yet you are disappointed.

For example, people are not going to invite you to travel with them because I can't travel like I use to. 

I can't do road trips, I can't golf, but I can do lots of other things. 

But, that is life and I am going to enjoy my new chapter....

One day I was driving after I had the big brain bleed....

One day I was driving after the big brain bleed and as I stopped at the stop sign I experienced the following. After the first stop, I felt the rest of my body stop again, as if bringing up the rear. A double stop.

And then for the finale, I felt my whole body go up in the air and return. 

I didn't freak out, I just thought how weird is that!!!!

After awhile I got use to it when it happened which wasn't all the time.

Just weird and freaky.

How to put the dis in disability....

How to put  the dis in disability ... First, I hate the word. Can anybody think of a new word for it?

On the other hand that is what it is. First of all you feel dissed, when you walk in a room you are noticed as having a disability. I know I would. And in the past, maybe I would not talk to that person out of fear of annoying them, making them feel different which they already are painfully aware of....

Or, maybe you just don't want to hear about it. Maybe you just need to get on with their day and they have their own issues to get through...

But we know who we are and we are feeli , it...

This is my new normal...

This is my new normal... I can't believe it has been 9 years since my life changed forever.. Nobody really does. I have been toughs, joked about it, laughed at my fears, been fearful, cried and now I am the acceptance part. It is not what I prefer... Of course I am great full, but I want my life back. No, didn't  I jus say I was at acceptance?! Well almost...

My neighbors had to hold me...

My neighbors had to come over and hold me sometimes when I felt dizzy or a vertigo siege coming on... The room would start spinning, my heart would be spinning and I would call them. At first. They wanted to call an ambulance because it was so scary for them...

I told them no, but to please hold me, hold my hand in case I started my vertigo dance. The vertigo dance is not one you want to learn. You feel out of control,you start fish flopping and I am afraid I might hurt myself. So she would just hold my hand, talk to me, just being there as I was flying, spinning,whatever the dance of the day would be....

Oh, and did I mention I always take a Xanax which helps tremendously...

Eventually, it passes, survived another vertigo dance....

Why the giant headaches?????!!!

Why the giant headaches???? It has been 2.5 years since my surgery and now I am having big headaches. Is this part of the healing process, is my brain regenerating after the surgery, is it the scar tissue , is it skull pain, myo facial pain, cranio sacral?'

 Didn't have headaches before I had the brain bleed, and not after the brain bleed. In those days I suffered from severe vertigo....

11min.s and the near accident....

11 min.s and the near accident. Things can happen so quickly. I don't drive very much,just close to home, to the drugstore, to the gym. 

But, I stopped at a gas station and turned lest to go home, not realizing that the intersection had changed. They had put up concrete to make turning lanes , I turned left ànd was half on and half odd the concrete, going the wrong direction and knew enough to get off the road.

As I was getting out of the car , looking down I saw two black shoes and I knew I was I trouble.

I explained to the officer that I was. Recovering from a brain bleed, didn't drive very much and had a handicapped stičker.

Fortunately he took mercy on me and just warned me to drivè carefully..

Phew!!!!

New rule-- I can only turn left through a stoplight at all times!!!

The first time some friends took me to...

The first time some friends took me to the mall was a scary experience for me. I was anxious,scared of getting dizzy, scars of freaking out.

It was so nice of my friends to invite me out, they had no idea what was going through my mind.

Thr lights, the crowds, everything thing was so overwhelming to me..

Lol

The disappointment of not hearing from...

The disappointment of not hearing from some people is disappointing. Fortunately, my list is pretty short.

 My list of hearing from people who you didn't expect to hear from is much longer and touched my heart.

People don't realize how much it helps to hear from people.

Our society is getting to use to just sending an email.

Nothing replaces the human voice and the human touch.

My war wounds ...

My war wounds still remain. My face is better, I had some eye surgery to help my eye blink and to even them out. My face looks so much better from the surgery. I still look I have Bell's palsy  which I don't truly have and a smile like Popeye minus the pipe. People ask me about getting it fixed through plastic surgery and I have decided to never get it fixed. It is my war wound, just like Harry potter has a star on his forehead, I have my Popeye smile... I bet Popeye had a brain bleed too. No wonder he always was smoking his pipe , today I take pills. I have a lot more respect for Popeye then I did before... 

Be sure to join thr angioma alliance...

Be sure to join the angioma alliance for further info and to share and learn more stories. I could not read anything or join for a long time until I got out of denial. Now, I like bring part of this organization.

Most important is to register with the DNA and tissue bank so we can help get to the bottom of this problem.

Brett Michael, gabby giffords, mark Kirk,George Gershwin ....

Brett michaels,gabby giffords, mark Kirk, George Gershwin ... You are all warriors as I am...

We found courage we didn't know we had. And,George , you could have been sa Ed but the medical community wasn't advanced enough at the time...

And so many more names who are warriors too...

We fight on, we learn to live with the disabilities and some are lucky enough to make a full recovery.

And some don't even get the chance.

After the brain bleed...

After the brain bleed I could not take the left eye patch off for a second. If I did take it off. I would feel like I was falling down to the bottom of the Grand Canyon .

Awful feeling...

Gels and tapes continued....

Gels and tapes continued.... To explain further, my eyes do snot work together. I call one eye my Republican eye and the other eye my Democratic eye. They can't agree to do anything together. So, that is the reason I patch my left eye so much since my right eye works better....

When both eyes are out I have to constantly converge my eyes, I have blurry ness ,I call them my kaleidoscope eyes...

Gels and drops. Be sure you ask your doc to explain about the different drops. I use the heavy gel at night, sometimes drops so my eyes will be clearer, etc. etc. be sure you discuss this with your doc

In detail.

You won't believe what a difference the right drops and gels make!!!

Gels and tapes...

Gels and tapes... Since my surgery three years ago I have had to put gel in my left eye every two hours,sometimes more. Then I have to put thr tape on and off...just to be sure that the eye keeps functioning.

Cured sells an eye bandaid which I found to work better than all the different tapes I tried.

Driving to my husband's work for the first time...

Driving to my husband's office for the first time-wow! It has been at least three years since I have driven to the office..... I was nervous about driving, but it was time to go for it. I didn't go on the highway, I took the side roads because I was a bit nervous.when I got to the office I could feel my hands trembling a bit, but thèn I felt so happy that I did it.

This was the first time I didn't have help and my dad was visiting from out of town, so off I went.

When I got to the office, I rested for awhile, shut my eyes and did some deep breathing.

When I left I knew in my heart I was goi g to go hwy home or bust!!!

It felt so good.

A real sense of accomplishment ..

Ready to try the next step!!!!

One thing I don't have to worry about is turning 60....

One thing I don't have to worry about is turning 60 because I have been to busy surviving having a brain bleed... I am just thankful to be surviving,adjusting to my disabilities, thankful to be in the game,

Ok. I am third string....

The mark of zorro....

The mark of Zorro is what I find all over my house. Nothing exciting like a z slashed with a sword by a

Dashing young man named Zorro, no such luck. My mark of Zorro is tape and band aids stuck everywhere all over the house. Since my left eye didn't shut after my surgery it had to be taped ànd opened constantly to put gel in to keep it moist. I had tape or an eye bandaid on the bottom of my shoes, attached to my sheets, stuck in my dresser, falling out of my purse,attached just about anywhere. 

After awhile I had to order it by the bucket loads, too bad they didn't sell it in a ten gallon drum..

What keeps you motivated is that you don,t want your eye to dry out and stop working. So ya do it and do it and ya do it...

Hard to turn me neck, get dizzy...

Hard to turn my neck, get dizzy. I have been working with a masseuse who is familiar with cranial sacral work... She knows how to massage my head which is also still sore from the surgery which was almost three years ago. We are working on getting my range of motion back which is mostly about turning my neck while lying flat. This is very difficult to lay flat and to get my head to look straight up. Week by week we work at it, then the next step will be to turn it to the left. Turning left gives me dizzy/vertigo so I work at it slowly. Be sure you work with an experienced  masseuse . Go slowly. Go slowly. Go slowly...

Say hello in there to the others...

Say hello in there to the others. So many times I see people who know me who don't even ask what happened.... 

That's why I love kids, no matter where I am kids always stop and ask me what happened to my eye or my face...

Don't ever forget to say hello and how are you?

I wasn't perfect at it either so no blame,just always learning to care more.

I'm like the ball in a pinball machine...

I'm like a ball in a pinball machine. Through this whole recovery and before I feel like I have bounced from one direction to another. Different docs, physical therapy, massage for myo-facial pain from the surgery, trying Botox for skull pain, migraine pain, going to the psychiatrist to manage and try different drugs to give me for energy, less head pain. It is a revolving door, always trying different things, needing different help as I recover. Acupuncture.. You name it i have been there. Gluten free diet.

It all helps, but there has been no flow to my recovery.

I hope in years to come as they learn more about the brain, I hope help will go more smoothly.

I was lucky to be saved as I am a pioneer in this type of recovery.

I hope by writing this I can help others and future generations cope with brain aneurysm  such as mine.

Being in the stem happens to not be so common , effects vestibular issues ,etc. so complicated. 

As a matter of fact I got a call from my surgeon three years ago and he asked how I am doing. My answer?half better, half worse.

One weekend we went to DC ....

One weekend we went to DC and it was the most walking I had attempted yet. I was doing ok   But it was like walking in a sandstorm . I had somebody from the family hold me on each side because we were ib Georgetown which was crowded and the streets were crowded 

...

Now I know how Lawrence of Arabia felt everyday...

Five stages of recovery.....

Five stages of recovery , just like five stages of death..

First, denial. Who can believe when they tell you need brain surgery. I couldn't hear what he said, I just pictured Frankenstein anad the bowl on his head with the electricity buzzing... You cànt believe the doctor is talking to you. It is a process to take the information in. De Nile , your first stop.

Anger-how did this happen to me?? Why me??? Life will never be the same. I'm scared. Shock..

Acceptance -after the initiàl shock and time , there comes acceptance. It takes a lot of time,support and love to get to acceptance ...

Making he most with what you got. 

Who knew how imp. Eyebrows are, every part plays a role...

Who e ver knew how imp. Eyebrows are, and every part of your body is ?????

My left eyebrow didn't close after all after my surgery, had to tape it closed on and off, and use gel constantly...

I used breathe a right strips to close my eye , pirate patch, tape,etc.

So, I had surgery and they put a piece of titanium or something in my lid which helped my eye to blink but not quite.

Then, I had surgery on my bad eye where they sutured it up and now my eyes are even, now there isn't so much whit under my left eye showing so it is protected, and my eye blinks better.

Not perfect.

But, I don't have to patch it at night, just use gel.

I can use left glue during the day which is nice.

My eyesight is a little better, maybe...

Little disappointing, but no regrets.

I just believe it is better and cope with this is maybe as good as it gets.

I can still see...

But, now I know how important eyebrows are....

How come today I had a spin??...

How come today I had a spin? I have a cold, but out of the blue, I have a spin..

I remained calm, took a Xanax and on with the show...

How to deal with bandaging an eye..

How to deal with bandaging an eye was a never ending learning process for me. After surgery my left eye would not shut due to cranial nerve damage.... I had to have it taped on and odd so the eye wouldn't. Stop working and had to put eye drops in every hour so my eye wouldn't dry out.the docs put on tape that was hard to pull off my face with gauze which was also itchy and uncomfortable. After about a week or so I was introduced to a neuro ophthalmologist who took a breathe right strip which she used as a bandage which was much more comfortable.
I also used a pirate patch ,had a friend sew a patch over my eye glass, I just kept trying different things,
Then one day, almost 2.5 years after my surgery a woman stops me in the gym and asked me why I was using such uncomfortable tape on my eye. She sent me right to the drug store to start using eye bandages. Why didn't someone tell me that before????
Well, now you will know! What a relief...
I also wear dark glasses for bright lights and the sub.
Also a cap helps a lot....

When you start a new medicine....

When you start a new medicine be sure your doc has checked to make sure it agrees with your other meds you are already taking.
Discuss with doc the side effects...
I always start a new drug with half of what the doc prescribed to see if it agrees with my system.
For example, I tried nuvigil , only half of what the doc suggested. Half of a nuvigil works great , when I tried the other half later in the day I got jittery. So, now I am going to take my half in the morning and try half of a half later in the day...
I have learned to not rush a new drug, especially psychotropic drugs..

I love Picasso ,s cubism...

I love Picasso,s cubism because it reminds me so much of how I have felt through my brain bleed... In pieces, not all put together, some parts of me work better than other parts, I think unglued would describe it the best...

Read and join the cavernous alliance assoc...

Read and join the cavernous alliance assoc. this is where you can learn about other people,s experiences and get advice and make fellow friends who are going through similar experiences. I couldn't read it for a long time because I was scared and was afraid of what I would find out. Be ready to embrace the good and the bad...
Recently I read about a fried who I have been following for a long time who might need surgery again. Of course it scared me at first, even though I know that can happen again. It took time to process it and now I realize that could happen to me too.
But, now I am no longer afraid and leave each day.
What will be will be....

What to do when you get an MRI...

What to do when you get an MRI ...
1)depending on your case, be sure you are sedated if needed.
2) depending on your ins.,offer to pay cash, it can be cheaper. I paid around $500 for my last one.
3) be sure you have it in a closed MRI , the other ones are not for us.
4) make sure you have the appropriate contrasts done
5) make sure get the right cuts which the docs will understand
6) ask questions...

It feels like being in a twister, it is just inside your head...

It feels like being Ina twister, it is just inside your head.. I have tried so many times. To put it into words what it feels like when you have a brain bleed... You are zooming through the sky, you can't really feel your body, you want to grab onto anything you can reach,your heart is pounding..
I often land on the floor because it pushes me out of bed and I think it might be searching for comfort...

How come their isn't a soap opera....

How come their isn't a soap opera called The young and the helpless?! Had another spin last night... I hate them..
I think when I am overtired and stressed I am more prone to them?

I am beginning to realize...

I am beginning to realize this is how it is going to. Be. For the longest time you think you ar e going to be done someday... It has been about ten ears, 2.5 years since surgery, out of the red zone. But now it is the acceptance zone that I had not put that much thought that I am now in the permanent zone.

The whole point of the cranial sacral...

The whole point of the cranial sacral is to increase my range of motion that I lost from the surgery.

Went for crànial sacral massage...

Went doe cranial sacral massage . After I had my brain surgery ,as mentioned before, there are certain positions that still make me dizzy. I are can't lay to the left, can't lay on my back,can't turn my head if I am laying on my back elevated,etc. I can't explain why, you would have to ask my brain.
So, it is slowly getting better , but when I work with the massage therapist she is trying to get my body do what it use to do..
She did a great job, got my head to turn to the left three inches more.. It was scary because I could go off into a spin., but she talked me through it and made some progress.
It only felt like I was having an exorcism. I was sweating,shaking afterwards.
As the day wore on, I felt better, relief...
In the morning I had a small spin which I hadn't had in awhile. I am sure my brain was saying,now you want me to do what? Haven't I been through enough.?
So, today I was a a little headachy, but ok....

P

Happy Mother's Day Mom....

Happy Mother's Day, mom... Miss you... It seems like you have been gone forever, but don't worry... I remember everything, what a wonderful mom you were...
When I had to go for surgery, I felt your presence, pushing me,reassuring me everything was going to be ok...
And sometimes when I was struggling I felt you pushing me through, and sometimes you had to bring Grama too for extra help too..
I am thinking of you and remembering you. And Grama too...

We are like dogs...

We are like dogs, people with issues,disabilities, whatever you want to call us--we can smell,sense when you ask, care ànd if your concern for us is real or memoreck..
You aren't fooling us. We know...

Last night we went to the movies...

Last night we went to the movies and once again realized I look at people differently.. I use to look at the kids, the couples,etc. now, I look at the wheelchairs,the aids feeding their clients at a restaurant, the very hardest is young children in their wheelchairs wishing they could run and jump like the kids they are watching...
I widows with their friends using their walkers trying to put on a good show. But, I know they are remembering the good old days which we all tend to take for granted .until one day we are one of Thea others, the outsiders. Remembering....

Yesterday I went to the neuro-ophthalmologist ....

Yesterday I went to the neuro ophthalmologist for Botox shots for my head. He explained that the reason I was having so much pain was from the nerves in my skull. My head has been aching everyday since the surgery. Actually ,hurting more as time went by.
I hope this will give me some relief from the constant throbbing and pain....

It has been 2.5years since the surgery...

It has been 2.5 years since the surgery and I decidedtocoe out of the closet .
I put my actual picture of how I look on Facebook
It's liberating,freeing,feels good

My new problem has been having gargantuan headaches verging on migraines...

My new problem has been having gargantuan headaches verging on migraines...it has been 2.5 yyears since the surgery ,always had head pain, but now it is worse. One doc said it is because the Scar tissue Is pressing on my nerves. Also,it is just a continuation of myo facial pain from the surgery.
I will continue with acupuncture which helps relieve the pain. I also will start cranial facial therapy.
That means massage which is more gentle rubbing and they will help my to turn my head further to the left, lay flat and lay to my left....

I went to Madison to visit my Dad...

I went to Madison to visit my Dad who is 96 and lives alone in the house I grew up in. I got a chance to visit with his friends, talk to his social worker, nurse,etc. he does amazingly well and fortunately he comes to see me once a month.
I am still adjusting to driving and was suppose to meet my friend to do some fundraising . It was a place that I had never been to before and it was way out of the city. All of a sudden I had a panic attack which I hadn't had for years. I shook from my head to my toes. My body was letting me know to not attempt this drive. It was too far and I was unsure of finding it. So,I came to my senses and had my friend drive to our meeting. I listened to my body. I am not there yet to take on such an undertaking.

Three pounds of matter really matter...

Three pounds of matter really matter !can you believe that is all your brain weighs and the brain runs the whole show? That sure came as a surprise to me... Of course, I know mine weighs a little less since they cut into it. You should feel is, mine is now like a ski slope I the back, and you can kind of wiggle the spot where they cut me open. I wonder if it is ok to wiggle it, probably not...
And in those three pounds who would think there are millions of neurons.. I have been trying to shake hands with all of them,not done yet...

How important the right pillow is..

How important the right pillow is. Because I cannot lay flat physically, I bought a pillow from a specialty bed store and bought this pillow that makes me sit upright as much as possible.
I also have a problem of waking up from a deep sleep and start flying spinning... So ,my husband discovered that my problem was positional. Once I started using the pillow the night spins were reduced. I still get 1-2 a month. They are awful. I hang on to my husband for dear life ,often falling out of bed when it stops I am panting Ike a dog , my heart is pounding, and I often go fetal for at east a hour before I can get up.... Then I spin in bed for awhile before I can go back to sleep.
Then the next day I fee depressed,worried about the next night

Today is Sat.,march30 and thiß is the first night...

Today is Sat.,March 30, the first time in 2.5 years that I went out to dinner at a busy restaurant and I could take me patch off for a period of time. I did it twice! Progress is such an incredible feeling!!!!!!

You notice I keep calling it a brain bleed which it was...

You notice I keep calling it a brain bleed, but it w a stroke. I just don't like to call it that..I t is more vague when you describe it to people....

One trick pony, one trick table..

One trick pony, one trick table...my kitchen table became a nightmare for me after my brain bleed.
When we ate dinner I always felt like the table is moving and I am moving too ? I became so edgy at dinner,we often had to eat on the couch in the sun room I was like Harry potter, never knowing what was going to move next. I started to hate the table!!!! If I wanted to be Harry potter I would have signed up for magician,s school....

P is for permanent...

P is for permanent ...of course, you start by hoping it will go away. You keep waiting and waiting. You just can't imagine these life changes are going to be forever.THen, you start bargaining with G-d ,all o f a sudden you are praying that they will go away.... You keep waiting for it to go away... Then hen that doesn't work you start accepting that this is the way it is going to be ,stop being sorry for yourself and count your blessings for what you do have going for ya
What a long process this has been since my brain bleed happened 8 years ago and the surgery was 2.5. Years ago. I can see why people find de-Nile such a comfortable location to stay in...
But, p is for permanent ....

When we went to New York one weekend...

When we went to New York one weekend ,it was the beginning of my walking Down the

city streets
Which has bee challenging because of all the visual stimulation. My daughter held me on one aide and my husband held me on the other side, the only thing I can compare it to is walking through a sandstorm... Everything was a blur, I had to rely on my husband and daughter to direct me, besides getting to those oh so murderous curbs... It was like walking through a sandstorm...
Now I know how it must of felt trying to walk during the dust bowl...

I had a weight put in my eye surgically....

I had a weight put in my eye surgically to make it shut better. After the surgery my left eye would not shut at all so I named him big eye since he was always right out there making a sight for sore eyes. Ha,ha...
So, now my eye looks more normal ....
I still have to patch it shut a lot because my eyes don't work together ...
But, it is much better since I had the weight put in...

Àlways call your mother and always call upon the sick and aged..

Always call your mother and always call upon the sick and aged.
You have no idea how much it helps to hear from a friend, or send an email if possible....

I live for those who didn't,t make it..

I live for those who didn't,t make it.... So many people don,t get a chance to make it to the hospital in time, or live in a country where they can,t get the care or can't afford it...
It is really thanks to the MRI inventors that saved my life.
When I was young I had no idea why I felt dizzy or flew out of bed. I think of all the people who died before me and didn't,t even know what was wrong with them. Not to mention the families who didn't know why their loved ones died.
So, when I get better I hope to help others who struggle with brain bleeds and gun shot wounds like Gavin Gifford .
Wen I think I was strong getting through this, Gabi leaves me in her dust...

Today was the most I have managed on my own....

Today was the most I have managed on my own without help. Had early breakfast with Dad,, then grocery shopping, then swim class,made lunch for my Dad and myself. Made phone calls,then drove to get my watch fixed,finally.
Then, came home,rested and prepared dinner.
Phew.
It felt so good to do it on my own.
Then,worked on massaging my head which worked out pretty well.

My head hurts, my neck hurts, my face hurts everyday...

My head hurts ,my neck hurts, my face hurts everyday...
The worst pain is the top of my head at the top where they must of put my head in some sort of a medical vices.
It has been 2.5 years and it still hurts
It is better, but it still hurts.

After the brain bleed I could not take my eye patch off...

After the brain bleed I could not take my eye patch off for a second because it was looking down to the bottom of the Grand Canyon..
I would feel dizzy,scary ,felt like I was flying to the bottom of the canyon..
It would be quite awhile before I could take my patch off for a little while...
Be patient, it did get better.
But, honestly, it was pure hell...

Spin city arrives again....

Spin city arrives again... It,s been awhile ,maybe a month and then it happened... I woke up, had a second before it started ,started breathing and then I was off to outer space... But, this is the first time I breathed through it along with my husband grabbing me... Then , it started again, I breathed through it again while my husband held me. Unpleasant, but better...
Then, I get the blues...
Why is this still happening?

Before my surgery I had constant ringing inone ear...

Before my surger I had constant ringing in one ear... If you ever want to lose your mind,try ringing i your ears for several years... It is like having the tv playing I your ear all the time..
The day I had my surgery it stopped,like a miracle... Also, my high blood pressure had disappeared... Another miracle...
So , listen to your body, my body was trying to tell me that it needed help.
My body was giving me warning signals that I wasn't listening to.
Please listen to your body, never hesitate to go to your doctor...

When a doc prescribes meds to you...

When a doc prescribes meds to you, make sure you tell him what else you are taking, it also won't hurt to read up on these drugs so you know as much as possible...
Also,when I start a new medicine I often take only half to make sure my system agrees with the medicine...then ,after a week I will increase to the full pill...
I can't tell you how many times a medicine hasn't agreed with me, so I had to learn the hard waya...

have started cranial sacral treatments to heal my body. Since my surgery 2.5 years ago....

Have started cranial sacral treatments to heal my body. It is a little hard to explain,you have to be open to what I call touchy freely work. But it is helping to take me headache pain away and to get my body to turn left and to work on laying on my back. So far ,so good.
My body had been on red alert for so long ,I am now working on getting my body to let go of the pain and the fear which has been so I ingrained in my body...

Patching my eye turned into a big deal....

Patching my eye turned into a big deal...when this started 8 years ago with my big brain bleed...
It was so scary to accept that my eyes no longer worked together and discovered the world of patching.
When I was in the hospital the doc used several layers of gauze pads and then he taped it...
The nurse was giggling in the background letting me know she could fix it so it would be more comfortable.then I used breathe rights in the verticals position for quite awhile. I also used a pirate patch which was way uncomfortable. Hated the strap which hurt my head,it stuck out too much so I could not see much to the left. It was kind of like an eye bra. Wore that forever. Then I switched to tape which felt like I was ripping my skin off all the time,constantly putting it on and off all day. Frustrated beyond belief.
Then one day ,after eight years , I was getting dressed in the locker room and a lady looks at me and she says. Get yourself to Walgreens and buy an eye bandaid... Bingo!!!!
Wow,after eight years, I got it right....
Unbelievable....

Besides the almost accident,my flying out of bed,did I mention...

Besides the almost accident,my flying out of bed, did I mention my gargantuan headache I had on Tuesday... Three events in one week , not my best week.
The day of the headache it started with adult pain, and then whammy, my head wouldn't stop throbbing.. It was the debilitating variety,couldn't move all day. My poor husband had to bring me dinner in bed. Sigh.
Frustrating week...

Eleven minutes...

I drove to the gas station and pulled out without noticing the new concrete median which I drove over ,driving the wrong direction and pulled off as soon as possible. This was my first major driving faux pas and felt sick to my stomach about it...
I got out of the car and saw big black shoes, looked up to see a police officer and immediately broke down...

Fortunately, the officer took heart and I explained I only drive locally and usually not by myself.

My lesson? Only right turn and left turns only through stop signs...
Safety is number one..

After calming Dow n I went to swim class, lasted 11minutes ,realized I was too upset to swim and. Went home...

Another flight,really??...

Another flight,really? I don't understand why I am sound asleep. And wake up feeling like I am flying. My husband tried to grab me, but I fell out of bed while spinning.... You feel like you are out of your body.. Thr only thing was that it was milder or I am getting use to them... I could get up after a short while when before it could take an hour or so...
So unpleasant...
I don't get to know why, just guess... Maybe did too much, maybe used the computer too long,etc...
My real guess is that my brain is still healing...
I didn't moan about it,put it in the back of my mind and had a usual day...

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

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

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

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

I had a spin last night..

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

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

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

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

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

P is for permanent...

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

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

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

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

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

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

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

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

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

Botox and acupuncture ....

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

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

Amazing!!!

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

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

Fear of flying...

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

The restaurant swirl in the restaurant...

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

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

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

Dear brain

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

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

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

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

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

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

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

Try,try and try!!

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

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

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

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



....