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

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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.

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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....