Saturday, November 19, 2016

The Election

Eleven days ago on November 8, the unthinkable happened. A man who has never held public office or has never even had to apply for a job became the President Elect of our great country. He was not endorsed by any major newspapers, he wasn't endorsed by any ex-Presidents. He didn't win the popular vote, meaning most Americans didn't even vote for him. So what went wrong? Yellow journalism. Plain and simple. The type of journalism that presents little or no legitimate researched news and instead uses eye-catching, sensationalized headlines and photos to sell more newspapers, air time on TV and radio. I don't agree with such tactics but I understand. The media has been scrambling for a few years to figure out how to make money now that most people get their information online. The result of many reputable newspapers going under is a population that has become accustomed to the exaggerated, scandalous, fear mongering and sensationalism that has made reality TV a part of every day life. If you see it, read it and spread the information without checking for reliable sources, you are in fact part of the problem.

During the 8 year Obama administration this type of journalism has been at it's peak. Trump began his political career by jumping on the ‘birther’ movement against Barack Obama in 2008, stating that Obama wasn’t born in the United States and thus was ineligible to be President. Shortly before the 2016 election, Trump finally admitted that President Obama was indeed born in the United States with no apology of the chaos it created. In the aftermath of years of repeated misinformation of this yellow journalism, people still believe this untruth.

Another example is the InfoWars broadcaster and Trump ally, Alex Jones, who claimed that First Lady Michelle Obama is secretly a transgender woman who murdered Joan Rivers to cover it up. The story originated when Joan Rivers, the comedian known for her lack of self-censoring, officiated a same-sex wedding and was asked by a photographer if she believed the United States would ever see a gay or female president. Her response was typical Rivers. "We already have it with Obama, so let's just calm down," she said. "You know Michelle is a trans and Barack is gay." It was a joke! Joan passed away from a medical procedure shortly afterwards and word spread through the yellow journalism via Alex Jones with a very ugly twist. Seriously? Yes. People that I know really did believe this nonsense. If you google the story and it only shows up on sites like Breitbart and infowars, and not on websites like The Washington Post or NY Times, then they need to be reported.

“If we are not serious about facts and what is true and what’s not, particularly in an age of social media, where so many people are getting their information in sound bites and snippets off their phones If we can’t discriminate between serious arguments and propaganda, then we have problems. If we just repeat attacks and outright lies over and over again, as long as it's on social media, people start believing it. And it creates this dust cloud of nonsense.”    ~ B Obama

As for the smear campaigns on Hillary, the yellow journalists have convinced many that she is a congenital liar. When asked what it is she lied about, most people can’t point to anything specific; they have just been programed to think she’s dishonest and corrupt. The fact that she’s been dogged by political enemies and investigated by special prosecutors, the media and Congress with unlimited budgets and every possible means of getting to the truth and has been exonerated doesn’t seem to register. Indeed, the fact-checkers all find her to be more honest than virtually anyone in politics while Donald Trump, by contrast, lies more than he tells the truth. I noticed during the campaign that every time someone said something derogatory about Trump, he would magnify it and turn it around and use it on Hillary.

If Donald Trump were a newspaper, he would be the kind of tabloid at the grocery store that you want to turn over as to not see the cover. The headlines would be huge 72-point type in red and always include words like “Disgusting,” “Huge,” “Loser,” “Slob,” “Terrific,” “Unbelievable,”  “Stupid,” "Nasty," and “Trump!”  Its stories would be written at the reading level of a third-grader, yet vulgar and packed with resentment, hate, envy and fear. Unfortunately, those headlines of the Trump media tapped in to the very angry left winged America who have hated our black president for eight years.

We all have a right to our opinion. It is the job as artists and musicians to use the 1st amendment to entertain, inform, criticize society in whatever form we choose. It is one of the highest expressions of freedom our nation provides and it allows artists to play a role in the evolution of that society. However, if your have a radio show, a TV show, if you are a writer for a newspaper, it is your job and the job of your employer to inform people that what you say is your opinion. NOT FACT.

The First Amendment guarantees freedoms concerning religion, expression, assembly, and the right to petition. It forbids Congress from both promoting one religion over others and also restricting an individual's religious practices. It guarantees freedom of expression by prohibiting Congress from restricting the press or the rights of individuals to speak freely. It also guarantees the right of citizens to assemble peaceably and to petition their government.

So now we have a President Elect whose relationship with Vladimir Putin is becoming more alarming by the minute. There is now a "Make the World Great Again" billboard in Russia with a photo of Trump and Putin on it. I find this alarming. Why is this not the front page story in every newspaper or the lead-in to every news broadcast? Yesterday Trump was able to settled out of court on a fraud lawsuit for $25 million for his Trump University scam, and it is a tax write off for him. The man he has chosen as his chief strategist is a man who is a known white supremacist, Steve Bannon. This is without question an absolute worst-case scenario.

Meanwhile, it seems that Mccarthyism has returned in the form of Trumpism, trying to blacklist anyone that speaks out against him. Today the media is covering Brandon Victor Dixon addressing Pence at a Broadway show and Trump demanding an apology. In my humble opinion we, as musicians and artists have an obligation to speak up against tyranny! Dixon words were respectable. It was a polite message about love and diversity. A message about respecting all Americans. He read his words from a small piece of paper to Pence after the show while cast members held hands:

“We, sir — we — are the diverse America who are alarmed and anxious that your new administration will not protect us, our planet, our children, our parents, or defend us and uphold our inalienable rights,” he said. “We truly hope that this show has inspired you to uphold our American values and to work on behalf of all of us.” ~Brandon Victor Dixon

Please watch the video:

Hamilton: An American Musical

Long story short, our country has been duped. He will never be my president. He has no loyalties beyond himself. He displays no empathy or compassion. He learned this behavior from his German immigrant father, Fred Trump, who made his millions as bigoted real estate mogul of New York’s outer boroughs. Woody Guthrie wrote some of his most bitter writings about his two-year tenancy in one of Fred Trump’s buildings "Beach Haven"

Old Man Trump

I suppose that Old Man Trump knows just how much racial hate
He stirred up in that blood pot of human hearts
When he drawed that color line
Here at his Beach Haven family project

Beach Haven ain't my home!
No, I just can't pay this rent!
My money's down the drain,
And my soul is badly bent!
Beach Haven is Trump’s Tower
Where no black folks come to roam,
No, no, Old Man Trump!
Old Beach Haven ain't my home!

I'm calling out my welcome to you and your man both
Welcoming you here to Beach Haven
To love in any way you please and to have some kind of a decent place
To have your kids raised up in.

Beach Haven ain't my home!
No, I just can't pay this rent!
My money's down the drain,
And my soul is badly bent!
Beach Haven is Trump’s Tower
Where no black folks come to roam,
No, no, Old Man Trump!
Old Beach Haven ain't my home!

There is nothing admirable, honorable or honest about him. He has no close friends from childhood. I look at him and there's nothing there to relate to. Nothing.

If you voted for him, you did so with the knowledge of the following and it makes no sense to me.

I have been grieving for my country. We have no idea what we are in for. Now is time for us all to emerge from the darkness and stand together for good, for love and for justice. Do what you can every day on a grassroots level, just as our President Obama has asked us to do from the beginning. It is our job as citizens of this country.

Sunday, November 13, 2016

Miracles Appear In The Strangest Of Places

Lana and CiCi - November 2016
I spent the weekend in Dripping Springs at my dear friend Lana Nelson's birthday party. It is always a huge 2 day celebration of music, filming, eating, drinking and reconnecting with old friends. This year was very much needed. I arrived feeling raw after a couple of days of not even getting out of my pajamas. Worried about the future of our country in the wake of Tuesday's presidential election.

After arriving, I started to feel better when I realized that my friends are as concerned as I am. Somehow the solidarity made me feel safer. By the second day I was starting to feel like myself again.

This morning I woke up and I was having a cup of coffee. My norm has changed. I haven't watched TV all week so after meditating, I was quietly reading on the couch. My phone rang, I looked over and caller ID said "Unknown." Needless to say I NEVER answer those phone calls but this morning something told me to answer. The voice on the other end of the line was like an angel with an Indian (from India) accent.

"Hello Christina, this is Dr. Misra." I looked at the clock on the wall. It was 9:00 am. Sunday. Why would my neurologist be calling me? She's booked until next year and was nice enough to fit me in, now she is calling me on a Sunday? Maybe she discovered something more in my MRI. For a moment, I was very confused and a little scared.

She said "How are you? Sorry to call on Sunday morning. I am referring you to a genetic counselor, Dr. Buchanan. He normally only sees children." My brain is racing. He only sees children because... they have only seen all of these anomalies in children that die young? Wait. I am a miracle. This phone call is a miracle. She was rattling off so much information, I was scrambling for a pen and paper to write down all the information she is giving me. I finally asked if she could email me all the information.

She didn't have a clue that to me this was miraculous. I was having a hard time registering that not only had she gotten me in to see her earlier this week, but she was calling me on Sunday morning with the help I have been praying for. My brother and I have at least one conversation a week about  what a difficult time we have had with neurologists and most of them are booked 6 months out. I asked for a miracle but I was looking more in lines of the president elect falling off the face of Earth. This is way better! She also told me that since I have been taking seizure meds for so long (since I was 25) that I need to have a bone density scan. Why hasn't anyone ever told me that?  She told me there is a website called "OMIM" that is an Online Catalog of Human Genes and Genetic Disorders.

Granted, I have been crying all week intermittently with praying for a miracle. I didn't specify what kind of miracle I wanted, I was just praying for a miracle after a very dark week in America.

As Willie Nelson says, miracles appear in the strangest of places. Never underestimate the power of prayer.

Friday, November 11, 2016

Nove 9, 2016 A Day We Won't Soon Forget

Last week my grandson Dylan and I made plans for him to spend the night on Tuesday night. Wednesday was his day off of work and we planned to go to ACC and get paper work done for college. YAY! Tuesday evening I was planning on a quiet celebration of the victory of Hillary Clinton's Presidential win. As the evening progressed, it became apparent that wasn't going to happen. I woke up Wednesday in shock. My country was in shock. Nonetheless, Dylan had plans to go to ACC to plan his future. Spending the day with him, making plans for his future was a God send, just as he was a God send into my life the day he was born.

Dylan Ethridge at Austin Community College
The rest of my week was filled with talk of another kind of college. The electoral college. Clinton garnered more popular votes than her opponent but lost the election because of the archaic electoral college. WTF? Seriously. None of the major newspaper endorsed him. None of the living president endorsed him. Hollywood didn't endorse him. His hometown of NYC hates him. How could he have still bought the election?

I have cried more this week than I have cried in years. Grief and fear consumed me. I woke up crying from a dream on Thursday morning that was a repeat of the Spanish conquerer Cortez in the take over of Mexico from the Aztec Emperor Moctezuma.

Cortez  and Emperor Moctezuma

A steady steam of heightened bigotry, racist graffiti and hate crimes in the streets filtering into my peaceful life. A hateful patients at doctors offices telling a Spanish office manager to go back to his country because he had a slight Spanish accent. He wasn't even from Mexico, he was from Spain. An American sou chef in Dallas being told to speak English when a customer heard him speaking Spanish to his grandmother.This isn't just about an election. This is about living in the land of the free, a diverse America. One where religion, skin color or sexual orientation or place of birth aren’t liabilities or deficiencies or moral defects. It is about inclusion and connection. It's about building bridges, not walls. But darkness won. The person who ran a campaign of fear and exclusion and isolation won.A very selective America won. One that is largely white, straight and Christian.

In the past few days safety pins have taken on a new meaning in the country. Some Americans are wearing safety pins as a symbol of solidarity with victims of racism, homophobia and religious discrimination. People have spoken out on Twitter to say that their safety pins show that they are an ally to marginalized groups. #SafetyPin shows I will protect those who feel in danger because of gender, sexuality, race, disability and religion. You are safe with me!

Meanwhile, I have been praying for a miracle. Not being specific about what kind of miracle because I have no idea what is in store. Just a miracle to give me hope and the courage to carry on.

Monday, November 7, 2016

YaY! A New Neurologist in Kyle!

Today was a great day! After my less than encouraging appointment with my last neurologist, I spent hours online searching for one that practiced at "Seton Brain and Spine" and one that has an office in Kyle. A very tall order, I know but I found her. Dr. Lotika R. Misra. I bravely sent her my MRI on a CD, the technician's notes and a letter of my history and my brother's history. I asked her to consider seeing me even though she had no openings until next year. Miraculously, I received a phone call on Friday from her office saying she had a cancelation on Monday morning and asked if I could possibly make the appointment. OMG! Yes! I'll be there.

So this morning was my appointment. I have been searching for a neurologist in Kyle is because I wanted someone near by that knows my history so that if I ever had an emergency, they would know my case. I live here, alone. I need to be able to get there if I am not feeling well. About once a month I have these strange episodes that I have always called the WaaWaas. Like clock work, last night I went to a party at my friend Sharon's house and by the time I got home, for no apparent reason I was crawling into bed feeling the Waa Waas... but this was sort of a good thing because my appointment with the neurologist was this morning so that horrible feeling of the WaaWaas was very fresh on my mind. 

Dr. Misra came into the office and said she was very impressed with my research and my letter. She thanked me. She asked a few questions, did a few tests that neurologists always do. We discussed the anomalies in my brain and a couple of them in my heart. She spent 2 hours with me. She asked if I had seen my MRI on the CD, I had not so she showed me the anomalies in my brain on her laptop. She spoke to me like she cared. I described the WaaWaas to her, she took notes and said she believed they are "focal seizures" and told me to double up on my seizure meds on the days I have the episodes. She told me she was going to look into sending me to a genetic counselor to see if there is a rare syndrome that causes the issues I have. 

For the first time in over 40 years of having these issues, I felt heard. I felt comforted. I felt hope. My heart issues have always been there as well, but the WaaWaa have been debilitating most of my life. I have never known when I would start feeling that dreaded feeling that I assumed were panic attacks when I was young. They have made traveling alone and many other things a challenge. I had an episode this afternoon, I doubled up on my meds and felt better within 10 minutes. 

Wednesday, November 2, 2016

TheTrailblazers Journey

I spent much of my life thinking that by the time I was in my early 60's I would have it all figured out. For years I spent Sunday mornings drinking coffee while watching spiritual leaders on Oprah only to find that many of them were on the same page that I am on. If you are lucky, by now you have owned your story and more importantly, you have come to the realization that if you ever reach the point that you have no more challenges, there is really no reason to be here. Life challenges don't go away. They just change and we become better equipped at dealing with them. And if you are lucky, and I do consider myself to be extremely fortunate, you accept each challenge as a lesson to be learned, not a road block.

On this path we call life, I have proudly come to the realization that I'm a trailblazer. I come by it honestly. My ancestors were the true trailblazers who came from Spain to the new world. There's a down side to trailblazing. Like my ancestors, most of my life I have been ridiculed by control freak, religious extremists who believe I am going to hell because they don't approve of my lifestyle. Wait, isn't that why we got kicked out of Spain by the Catholics? Yeah, we don't practice religion the same way so that make me wrong?  Yet again. However, from my perspective, if there were such a place called Hell, it would seem logical to me that those who are casting the stones already have prime real estate in Hell because who could be happy living in such judgement and fear of not being able to be in control of everyone? Should we not honor and respect one another and learn from our differences?

Looking back on my life, I now almost think it's comical that my parents were told I was a witch for using herbs and crystals to heal people in the 80's. Then years later, once herbs became mainstream enough to be sold in body care products at Walmart, herbs were all the rage. Hello! Herbs and spices have been used since the beginning of time and you live on a giant round rock called Earth.

And then there's been the question of yoga and meditation. I have practiced yoga since I was 15. My sister Nita and I used to do Hatha Yoga with "Lilias Yoga" on PBS. Yeah, two teenage heathens in my sister's bedroom learning poses that stretched our muscles and our minds. The truth is that yoga predates the religions that later incorporated yoga techniques into their religion. Yoga is NOT a religion and has been practiced for centuries to balance the nervous system and still the mind. Yet again, when yoga and meditation became mainstream enough to be taught at the YMCA, going to yoga class with their new yoga mat, bought at Target was just grand! Geeeez.

... And speaking of being a trailblazer.. I made trail mix before you could buy it at the store. I was a vegetarian before you could buy veggie burgers and soy milk at HEB. My sister and I made granola in the early 70's and in the late 70's I made yogurt and butter with the milk from my cow, Betsy. I created the first website and blog at the newspaper I worked for in the 90's and I was told that the internet was of the devil. Seriously. People are so fearful of change. Here's the secret. Embrace change. Lean into it, feel the fear and move forward anyway. Do something that scares you every day. I am proud to say that I now see that I have passed the trailblazing trait down to my son, Christian. I've enjoyed watching him come up with one crazy idea after another that I think will never work and then he becomes bored with the trends by the time they become mainstream.

Christian Ethridge 

I guess I have to be thankful that my parents ran out of time, energy and money to send me to the Catholic school that my siblings went to. I never bought into the guilt that many people are driven by or the idea of a place called Hell where I would go if I made honest mistakes or sinned. So here is the difference between my religion and their religion. A misinterpretation of the word "SIN." The original Hebrew root word of sin simply means "Off Target." Not damed to Hell. I never believed that I had to go to church pay someone pray for me. My God would never send me to a hot burning place for meditating or using rocks and plants to heal people. Again, I have to thank my ancestors who were curanderas. I call on them often for guidance. They were literally kicked out of their country because of their religion. Nobody can scare me with the threat of going to Hell because I don't believe they same thing they believe.

Christina and Phillip

Besides my ancestors, I've had other great teachers in trailblazing. My older brother Phillip being one of them. Seven years ago I saw him go through brain surgery and a year ago, he had open heart surgery. These experiences brought many lessons. For him, I saw a warrior unwilling to feel defeated and at the same time, he learned to compromise with his family and doctors while agreeing to both the brain surgery and open heart surgery. His health issues were something he was pretty sure he could handle with diet, prayer and willpower. He finally realized that the surgeries were his rescue boat, so he reluctantly climbed aboard. I experienced a mixed bowl of emotions watching him go through his medical procedures and seeing him embrace his vulnerabilities one by one.

I realized that since there was more than one of us, in my immediate family, with congenital brain and heart issues, it was imperative to document. For my children, grandchildren and everyone else in my family. Since then I have been on fire doing ancestry research to see if I saw any patterns. I've researched and documented each and every symptom the two of us had and compared them to others in our immediate family and then compared them to relatives in New Mexico. Meanwhile, I have been blessed to have met more second and third cousins than I can count. People that share my DNA, that look like me and who share some of my health issues. What a blessing that has been actually having extremely emotional conversations with relatives I never knew I had. On the down side, there have been way too many of us who have died of "brain tumors," "brain aneurysms," "strokes," and  "heart attacks."

So here I am once again, trailblazing and once again being shot down by the naysayers. Not only being shot down but being told that my health issues are psychosomatic and saying I should pray for for my health issues to go away but also telling my daughter that I focus way too much on my health issues.  Wow! So I wonder if say for instance you just happen to be 6' tall and you would rather be 5'8" could you just pray to be shorter? Because in essence, that would be the same as me praying to not have congenital health issues. I was born that way. And since all of my health issues are congenital, they aren't just my concern, they the concerns of everyone that is genetically related to me as well. Someday, someone else in my family may have to deal with these issues. So yes, I'm going to talk about it and write about it. I want everyone concerned to have documented information when they go to specialists instead of spending a lifetime wondering what is wrong with them. As for me personally, I'm rather proud of the fact that I have managed to function normally for the most part, my whole life. Up until 7 years ago, I had a full time job and raised children while dealing with a serious brain condition that cause seizures, migraines, neck pain, burning sensations in my arms and legs, dizziness and a heart condition that cause chest pain, heart palpitations, fatigue, hoarseness, wheezing, shortness of breath, difficulty swallowing and acid reflux. Not to speak of all the inability to maintain a regular activity level and the fear and uncertainty that goes with all of the above. Now, at the age of 61, my daily regimen consists of 10 pills, several herbs and a whole lot of prayer. I am talking A Constant State of Prayer and several days a month in bed and everything else in moderation.

So if I ever confided in you, it was because I thought you cared and/or I thought my information would be helpful to you, not because I was complaining. My health issues are far from being psychosomatic. Fortunately my physicians know this to be true and I feel blessed to have several that I work well with. My general practitioner knows I don't take pain meds and is perfectly fine with my daily consumption of turmeric for inflammation. My cardiologist knows I cut my blood pressure pills in half and after reading my MRI results and years of medical history, the last neurologist I saw said "You and your doctors have done a great job taking care of you. By the way, why were you granted disability? Just curious, because you need it for both your brain and your heart. But you are doing very well." I am guessing that was a compliment. My acupuncturist calls me the lady with the wild heart.

It is always such an adventure going in to have my annual tests because none of my doctors have ever seen any of the congenital issues I have. I have my heart tests in January and then in June I have all my brain tests. I have come to the conclusion that each test result is left up to the interpretation of each technician and doctor. I have been given some very strange results over the years. Seven years ago I was diagnosed with Syringomyelia, a cyst that forms within the spinal cord. The prognosis was horrible, however, now with no explanation, it is no longer there and symptoms are gone. I guess I prayed that one away... or misdiagnosed.. which is what has been happening my whole life. So now there are other issues. A couple of months ago after having my annual brain MRI, my neurologist reported that I have multiple developmental anomalies. Great let's hear it. By the way, I am convinced that for generations people have just lived with these anomalies and then just died younger than we die now, never being diagnosed. But again, the following is just to have something to go by if someday you end up in the ER and you think you are going to die. You probably won't.

As far as my brain goes, the report says I don't have a septem pellucidum. Huh? What is that? It is the thin, triangular, vertical, double membrane separating the left and right hemispheres of the brain.

I don't have one? The absence of the septem pellucidum can cause many symptoms but the only ones I seem to display are hormonal problems and seizures. Reading further on the report, it said that left frontoparietal polymicrogyria is present. Okay, what does that mean? The ridges on the left side of the cortex of my brain are smaller than the ridges of the right side of my brain. Again, it can cause seizures. When my neurologist saw this, he verified that I am left handed and an artist. There is more activity on the right side of my brain. I continue to read and it says there I have a left closed lip schizencephaly, also known as Split Brain disorder What is that? Oh... it's just a very rare disease, the second rarest known brain malformation. Symptoms? Seizures. Schizencephaly is derived from Greek word “skhizein” meaning “to split”, and “enkephalos”, meaning “brain.” The good news? Schizencephaly is not degenerative: meaning it will not get worse. 

Then... reading on down... there are two visible punctate foci. What? I wish these guys would speak English, what is that? Oh, that's just a tiny depressions on my mid right frontal deep white matter of my brain. I am not even going to concern myself with those. And last but not least, just as I had suspected. My MRI with the contrast dye showed that I have a small superior right frontal developmental venous anomaly. The tech wrote that I have chronic microvascular ischemic change of the brain. These are is small areas in the brain where tiny blood vessels have ruptured or clotted off causing, essentially, extremely small areas of strokes.

Just as I had suspected, Cerebral Cavernous Malformations. The otherwise rare genetic disease that has been running rampant in my family in New Mexico since the 1500's. For about 5 years now I have been doing research and trying to get my immediate family on board with my findings to no avail. On the other hand, my cousins in New Mexico who either have Cerebral Cavernous Malformations or who have immediate family that have died due to Cerebral Cavernous Malformations are extremely grateful for the work I have done. It is very difficult to be diagnosed because the malformations can only be seen with contrast dye and only CCM1 experts can detect the disease. The tech here in Kyle that read my MRI merely said that the MRI with the contrast dye showed that I have a small superior right frontal developmental venous anomaly and noted that I have chronic microvascular ischemic change of the brain. Uh... yeah... those small areas in the brain where tiny blood vessels have ruptured are Cavernous Malformations.

Dr. Leslie Morrison at the University of New Mexico is an expert who finally received federal funding for a study on Cerebral Cavernous Malformations about 2 years ago. I recently sent my most recent MRI results to her for further evaluation. The most common symptoms of CCM1 are migraines, seizures, stroke and on rare occasions, death. There is currently no cure. 

As we move further down the MRI to my heart, the MRI shows exactly what the MRI that I had in January shows. I have a right-sided aortic arch with a diverticulum of Kommerell. What's that? Well, in layman terms it is yet another rare anomaly of the aortic arch system. My aortic arch goes to the right instead of the left of my heart. This is rare in itself but mine is accompanied by a Kommerell diverticulum, or an aneurysm. I have to take a low dosage of blood pressure medication to because of blood pressure spikes. I avoid stress at all cost. The good news is my aneurysm is currently only 3cm, it doesn't become dangerous until it is 5cm. It causes horsness, whizing, difficulty or discomfort in swallowing, acid reflux or  GERD and snoring due to compression of the trachea and esophagus. Yeah, I am horrible to sleep with. And then I have aortic valve regurgitation. My heart's aortic valve doesn't close tightly, allowing some of the blood that is pumped out of my heart's main pumping chamber (left ventricle) to leak back into it. The leakage prevents my heart from efficiently pumping blood to the rest of my body. As a result, I feel fatigued and short of breath. This is not so rare but before I knew I had it, I had dental work done without antibiotics and almost died. I was sick for about 3 months. This also explains why I was never good at sports. 

And last on the list of congenital disorders - I have a horseshoe kidney, also known as renal fusion or super kidney. Yeah, I have not two by ONE kidney fused together, forming a horseshoe shaped kidney. Good thing I am not a drinker, huh?

So... there you have it. Again, I am writing this blog for my family. ALL of my health issues are congenital. Someday, someone in my family may discover they have one or two of the anomalies that I have. I pray daily that it doesn't occur however, I am here to give you hope. Brain and heart conditions don't have to be a death sentence. Stay on top of your issues. Live a healthy lifestyle. It's imperative. Have gratitude for everyone, everything and everyday. And most of all, remember that not one of us is perfect. Own your stories. When you deny your story, it defines you. It is our job to write our own daring ending. Live your life fearlessly.

Sunday, October 30, 2016

Happy 79th Birthday to Rudolfo Anaya!

Painting By Christina Fajardo
My Grandma Rosita Valdez Padilla's House
Puerto de Luna, NM

In 1972 I went to live with my grandma Rosita Valdez Padilla in Puerto de Luna, New Mexico. I attended my junior year of high school 12 miles down a winding 2 lane road that followed the Pecos River in Santa Rosa. That year was life changing for me. It was also the year that Rudolfo Anaya's novel, "Bless Me, Ultima" was published. It told a somewhat similar story of Antonio Mares and his relationship with Ultima.

Rudolfo Anaya

In Rudolfo's novel, six year old Antonio Mares y Luna, tells the story of the older curandera, Ultima who has come to live with them. The story is very near and dear to my heart. It took place in Puerto de Luna. My parents were born, raised and married in Puerto de Luna. It took place just after WWII. My father was in the army during WWII and my mother worked for her uncle at the post office in Puerto de Luna during the war. She would sometimes have to take telegrams to the families of fallen soldiers on her horse. She was only 19 at the time. That seems like a lot to expect of a teenager who was related to everyone in Puerto de Luna. However Professor Emeritus and New Mexican author, Rudolfo Anaya wasn't just telling my story, my family history, he is a hometown hero of Santa Rosa and Puerto de Luna. He has the most widely read and critically acclaimed novel in the Chicano literary canon since its first publication in 1972, the year I was living with my grandma in Puerto de Luna. Of course, by that time, I was just walking in his footsteps and he had moved on to Albuquerque where he would become the Godfather of Chicano Literature, the treasured son of New Mexico. 

This year Rudolfo became one of the newest recipients of the National Humanities Medal. I can't tell you how exciting it was to watch him on TV receiving the awarded from President Obama. While leaving the stage, he held up his hand and said "Viva Obama!" 

U.S. President Barack Obama awards the 2015 National Humanities Medal to author Rudolfo Anaya

What it must have felt like to be acknowledged by the coolest President we have ever had for playing a key role in weaving our New Mexican culture into American society through his body of work. I only dream of breaking the barriers he has broken by telling his story of the civil rights struggles of Hispanic people of New Mexico. He has given me the courage to tell my story as a female Hispanic woman. By telling his story of Ultima, he helped me to solidify the importance of a boy and his relationship to his wise and aging grandmother who held the secrets of life that only she could convey to him as a young boy before he grew too old to have the time or interest. I've personally cherish those times with my own children and grandchildren and I feel blessed when they come back and repeat information that I have bestowed upon them. 

Rudolfo has been a huge inspiration to me. Telling his stories has given me permission to tell my story. I write my blog to keep my very unusually rich New Mexican family story alive. My son said to me just the other day "Mom, you don't even know how many times a week I brag about the work you do, researching our family history and writing our story." It warms my heart to know that he understands how important it is. If I die without telling the stories, our history dies with me. My brother Phillip reminds me all the time that I am the keeper of the stories and the family history. My mother before me was the keeper. I only wish I had started writing while she was still alive.

The movie can be bought on Amazon Prime. 
I have streamed and watched it many times.

Rudolfo explains in this video how he receives guidance from his ancestors.

A Conversation with Rudolfo Anaya by Directed by Lawrence Bridges

It is an amazing thing to have those connections to the past. Sometimes late at night when I am working on my family tree, if there is a missing link to connect one family member to another, it is as if my guides come and the information just appears out of nowhere. So that answers the question of "do we live forever?" I would have to say yes. We are energy and energy never dies. I feeling the presence and blessings of my ancestors when I am working on our story.

Without getting way into my family tree, I am related to Rudolfo Anaya and Ultima, AKA Anastacia Lucero Boney.) A dear friend of mine, Jasmine is Ultima's great great granddaughter and now has a store in Santa Rosa, NM called Casa de Ultima. She does farmers markets around New Mexico and she always takes the Ultima doll I made for her with her to the markets and displays her among her herbal remedies and soaps.

Ultima Doll
Made by Christina Fajardo

Christina at the Rudolfo Anaya Statue
Park Lake, Santa Rosa,NM

Happy 79th birthday to you Rudolfo Anaya! You have been a huge inspiration to me. Your spirit will live on forever in your stories.

COLORES | From Curandera To Chupacabra: The Stories Of Rudolfo Anaya | New Mexico PBS

Friday, August 19, 2016

The Common Hispanic Mutation

This entry in my blog is dedicated to all of my relatives that either currently have Cerebral Cavernous Malformations or have loved ones that have died of this very rare disease. I pray that one day very soon there will be a cure. Until then, I will continue to be an advocate by sharing as much information about the disease as possible and offer moral support to those in need.

It's been a rough week in my little corner of the Universe. My conclusion... nobody should attempt dealing with serious, chronic health issues alone. Having an advocate that knows your medical history to accompany you when you go to doctor's appointments and treatment makes all the difference in the world. It has taken me a few days to regain my composure after an appointment with a neurologist earlier this week. I suggest if you are going to see a specialist for the first time it is good to have someone with you, to back you up, so they don't think you are a drug addict or hypochondriac. Advocates are also a big plus when we are physically and mentally drained, which happens often when one has a chronic illness. My heart goes out to Barack Obama every time I have heard him speak of his mother fighting Cancer and simultaneously fighting the insurance companies for the last year of her life. And I am grateful that he took that very painful event in his personal life and turned it into something wonderful. The Affordable Health Care Act.

My issue is a little different but just as frustrating. As we all know, nobody likes to go to specialists and confront serious congenital health conditions. And to make things worse, when you go to the doctor, they ask the reason for your visit and they want an easy answer in ten words or less because that is all they have time for. They want to draw blood, write a prescription and send you on your way. Unless it is is a neurosurgeon then they want to figure out when they need to schedule brain surgery. This week was no different. I left my new neurologist's office feeling like I had been hit by Santa Fe freight train.

Over the 36 year time period that I have suffered with a seizure disorder and migraines, I have seen numerous neurologists. Each time I feel like I spent useless time, energy and money, never to return for a second appointment because I felt unheard and degraded with no solutions for my health issues. My first mistake this time was finding a neurologist online. I chose a young female neurologist mostly because her bio said she also does acupuncture. How could I go wrong with someone open to alternative medicine? The first clue that I made a bad choice was when I called her office, nobody answered and there was a message stating that I couldn't leave a message. When I arrived to the medical complex, I couldn't find "Building F" so I walked around the complex in the pouring rain with a sopping wet, poorly drawn map that was sent to me via email. Map Quest only gave a street address on my phone. A minor inconvenience compared to the rest of the visit.

The doctor entered the office giggling that I looked like a shivering wet dog. She asked for the purpose of my visit. I was careful in answering because in my past experiences with neurologists, I have been accused of wanting pain killers to get high because I didn't want to take Imitrex for my migraines because it made me feel like I was having a heart attack. Another time I was accused of trying to sue someone after a car accident because I was taking notes during my appointment.

So this time I arrived with a neatly organized folder of medical history. I really wanted to start the conversation with "I need to have some tests done for an illness called Familial CCM, Cerebral Cavernous Malformations, or sometimes called The Common Hispanic Mutation.  It is caused by mutations in the KRIT1 gene and causes low pressure vascular lesions of the central nervous system. It consists of clusters of dilated thin-walled blood vessels that predispose individuals to seizures and stroke. These clusters of dilated thin-walled blood vessels are often misdiagnosed as brain tumors. They seem to multiply with age, as do the symptoms. But I decided to simply say "I have a history of seizures and migraines, my seizures are controlled with medication and the migraines aren't as bad as they used to be." So of course she responded with "So why are you here?" I said "Because I believe I have a genetic disease called Cerebral Cavernous Malformations (CCM1). I believe my brother has it as well. We have the same symptoms, his are worse because he is six years older. The disease is hard to detect so I need to have an MRI of my brain and spine with dye and genetic testing. If I test positive, I want my MRIs sent to a doctor in New Mexico who in the last year has received federal funding to do a study on the disease." She sat back and laughed and in a very condescendingly Czechoslovakian accent said "You can't just read information on the internet and decide you have this disease and ask for tests." THEN I pulled out my folder containing my medical history. I handed her a letter written and signed by 5 doctors from the Angioma Alliance endorsing the critical importance of pursing clinical genetic testing for patients who have a family history of CCM1. Keeping in mind that identifying a patient’s genotype may have immediate clinical implications for the patients and their family. It also stated that it is important for clinical monitoring as well as for future research endeavors. She said "Genetic testing is expensive. There is no reason for you to have the test. You are not going to have any more children. Maybe your children need the test, not you." She left the room with the letter from the Angioma Alliance and I sat there for about 5 minutes fighting back a strong urge to leave but I was waiting for the rain ease up.

She came back and started typing on her laptop. Apparently she had gone to do some research in the other room. I then handed her a report from my last neurologist stating that I had been diagnosed with another rare spinal/brain disease called Syringomyelia, a debilitating disease serious enough to be on disability. However the symptoms are the same as the symptoms of CCM1. I have reason to believe I was misdiagnosed. Either way, the only solution for either disease is to have spinal surgery if the symptoms become serious enough. I then handed her a report from my cardiologist stating that I have a 3 cm aneurysm on on aorta which is being closely monitored because if it reaches 5 cm I have to have open heart surgery. Meanwhile, I have to take blood pressure meds because sometimes my blood pressure spikes for no apparent reason.

Oh yeah, and about that genetic issue... my brother had open heart surgery in December to have his whole aorta replaced because his aortic aneurysm had grown to a dangerous 5 cm and during that same week, my other brother had an outpatient procedure to fix his Atrial fibrillation. I then handed her another report stating that I have an extremely rare right sided aortic arch with a Kommerell Diverticulum on my heart. She of course didn't know what that was. My cardiologist had never even seen one because fewer than 50 cases have been reported. It simply means that my aortic arch goes to the right instead of the left and has a bulge on it. And last but not least I have a aortic valve insufficiency which basically means the valve does not close properly so blood leaks back through the aortic valve. With each heartbeat, more blood than usual enters the left ventricle and so it needs to work harder. She left the office again. This time she came back in the office looking at me as if to wonder why I am still alive and started treating me in a totally different tone. I'm in fact, not a hypochondriac or a drug addict looking for legal prescription drugs. She documented 5 very rare medical conditions on my chart and ordered an EEG and 3 MRIs and still maintained that I didn't need to have genetic testing because she said it is obvious that I have the disease and there is no cure. No reason for an expensive test. I just went with that because I was too tired to pursue the matter. She said your physician's assistant at Victory Medical Center takes very good care of you and then she asked if I needed any pain meds and I told her I don't take them, I take turmeric for inflammation. She agreed that was a good idea as she handed me the notes she took and orders for tests.

I walked back out in the rain feeling completely wiped out. I drove south and upon arriving home, took a two hour nap. It took me two days to recoup from the very draining one hour doctor's appointment which felt more like a court date. And that is why I am writing this blog. I don't want anyone to go through what I went through earlier this week. Therefore, I have attached a few links about CCM1, the disease that I know many of my relatives have, most of whom have not been correctly diagnosed. The heart issues that I spoke of above are a whole other issue or maybe they go hand in hand, I don't know. Either way, my brothers and I have a congenitally compromised cardiovascular systems. My father died of a heart attack 15 years ago today and his father died of a heart attack as well. My maternal grandfather had 5 strokes before he died. I had a 1st cousin die of a brain aneurysm at the age of 50 and his brother and niece have migraines and other brain disorders. That's just the tip of the iceberg, there are too many more to mention.

So here is what I know about the rare disease called Cerebral Cavernous MalformationsKRIT1, sometimes called The Common Hispanic Mutation. About three years ago, while doing genealogy research, I came across some information about the disease. It causes vascular anomalies, that look like mulberries (mora in Spanish) Interestingly enough, as a child, I spent my summers eating mora while sitting in my grandma's mora tree next to the irrigation ditch at her house in Puerto de Luna, New Mexico. The photos of these vascular anomalies looked strangely familiar when I first saw photos of them. These purplish red mulberry shaped vascular anomalies cause many symptoms like seizures, migraines, a burning sensation in limbs, toes and fingers, strokes and sometimes sudden death. Cavernous malformations can form in any part of the central nervous system.

Some people with CCM also have cutaneous vascular malformations that look like this.... and guess what I have a "birthmark" that looks exactly like this and so do my offspring.

These Vascular Anomalies on the
Forehead are Common in My Family

This is one of the few photos I have of myself when
I was a baby. You can see the vascular anomaly on my forehead.

About 50% of the carriers of the (CCM1) mutated gene are asymptomatic but if you carry the gene, your children have a 50% chance of also having it. Even though it is a very rare disease, and the gene wasn't identified until 1999, it isn't rare to me at all. It mainly exists in the Hispanic community of New Mexico. Not Spain. Not Mexico. I've met a few cousins on facebook and who either still live in New Mexico or have ancestors from New Mexico who either have the disease or have had a loved one die of the disease. It isn't really a club you want to belong to but at the same time, it's comforting to have relatives in the same sinking boat.

I can't really remember the year I read The New York Times article about CCM1 but it was written in 2007. It was a compelling story of a seemingly healthy 9 year old suddenly passing away due to a brain aneurysm.  When I read the symptoms the little girl's aunt, Joyce Gonzales described of the burning sensation in her arms and legs, I knew I was onto something. As I read it, I was myself having a burning sensation in my leg and toes (as I do today.) I immediately contacted Joyce in New Mexico. She had been working extensively, building a family tree that linked most everyone with the CCM1 gene mutation back to Ana Moreno de Lara de Trujillo, my 7th great-grandmother, married to Cristobal Baca. 

Update: I originally wrote this blog in August of 2016. I am updating it and it is now 2021. I have now discovered that Joyce Gonzales is my second cousin.

Joyce Gonzales 

Dr. Leslie Morrison

Joyce immediately put me in contact with Dr. Leslie Morrison, a Pediatric Neurologist from UNM who is a specialist in the CCM1 gene mutation. Since then Dr. Morrison has received federal funding to do a study on the gene mutation. I also had several conversations with a cousin in Santa Rosa, NM who is an asymptomatic carrier of the CCM1 gene, however she has two children with the disease. One of her child had been misdiagnosed with a brain tumor and the other had spinal surgery to have her angiomas removed. I gathered all my info and took it to my doctor and asked to have the gene test and after waiting about 6 weeks for results, I discovered that they had ordered the wrong genetic test. By this time, I'd a dental procedure and the infection in my gums went to my faulty aortic value and I ended up being very ill for about 3 months so I dropped the ball on the gene testing and a possible trip to New Mexico.

Meanwhile, as I mentioned above, my brother Phillip was having very serious health issues of his own. After a seizure in 2009, he was diagnosed with a "brain tumor." He had it removed, recouped and then he had to get a pacemaker for atrial fibrillation. He had also been diagnosed with a 5 cm aortic aneurysm and in December 2015 he had open heart surgery to completely replace his aorta. His physical therapist gave him a score of 110% after his heart surgery however, he is still having issues trying to find a seizure medication that both works for him and doesn't have horrible side effects. I'm still not sure why medical marijuana for seizures in adults is still not legal in Texas. It is a total mystery to me. I have had issues with my seizure medications in the past but doing well with the one I take now, but with my brother still having major issues with his, I sure would like to see medical marijuana legalized.

My headaches aren't anywhere as close to as bad as they used to be but I still have daily episodes of severe weakness, burning sensations in my spine, back, limbs and toes. About twice a month I have these awful episodes that for a lack of a better word I call the WaahWaahs. It starts with a strange tightening in my lower back around my spine and then I feel a "click" in my brain like it is misfiring or maybe an angioma bleed. It's hard to explain I just know that once that happens I am going to end up in bed off and on for a couple of days so I have to cancel all my plans, turn off my computer, TV, music and curl up with my cat in bed under my down comforter in a cool, dark, quiet room. It is an overwhelming, scary feeling and I have often thought it would be a good time to go to the ER and have an MRI to see if in fact my brain is bleeding.

So about a month ago I decided it was time to jump back on the path of CCM1 research and see a new neurologist. I say research because there is no known cure. That's the reason I haven't been in a real big hurry to get the actual genetic diagnosis. Then what do I do? Have brain surgery or spinal surgery. No. I don't think I am ready for that. I guess I have to agree with this last neurologist. If it quacks like a duck, it is probably a duck.

However, with that being said, I have been staying on top of all the research going on in Albuquerque, NM from afar. And coincidentally night before last, I hopped on Facebook and saw a post on a FB group I belong to called "The Genealogical Society of Hispanic Americans." Someone had posted an article about Cerebral Cavernous Malformations in New Mexico. 102 people shared the article and I stayed up until about 2:00 chatting with distant cousins that share this disease. It may be a rare disease world wide but it is a huge scary disease in my corner of the Universe. I have attached lots of reading material and most importantly, the first link below which is a must watch video.

Wednesday, July 20, 2016

Los Padillas!

When I began my ancestral journey,  I was looking forward to writing this blog about my Padilla ancestors because it was the branch of my family I knew most about. Little did I know I would discover literally thousands of relatives that I never knew existed. I discovered Padillas on both sides of my family! My dad's 3rd great-grandmother was a Padilla. Not to worry, as you can see on the chart below, there's enough other DNA in the mix to make that safe.

In the beginning of my research, I got stuck on my maternal Great-Grandfather Jose Manuel Padilla because I had his middle name wrong. To make it even more difficult, there are thousands of Jose Padillas in the world. After all of my research, I have concluded that there seems to be parallel family units in several countries with the same surnames as the ones in my family tree. I've discovered multitudes of Padilla, Fajardo,Valdez, Chavez and Montoya families that have married each other all over the world. For instance, I found a Felipe Fajardo who was born in 1883 and lived in Albuquerque. He was  and he and his wife had children named Phillip and Anita. Uh... those are my father, my brother and my sister's names. That parallel family had me very confused for a few days when I began looking for my dad's sister, my Aunt Anita. I thought there may be some skeletons in the closet that I had not been told about. Even now, I only have a couple of photos of my Aunt Anita and no census information on her or my father when they were children because their mother died of the 1918 Spanish Influenza. My father was only 3 years old.

So, my first important discovery was that my paternal grandmother Josefita was a Labadie not a Montoya as I had always thought. She and her siblings had been adopted by her step-father Antonio Montoya so my dad is a Labadie, not a Montoya! This was a BIG find. In that branch of the family tree, my 4th Great-Grandfather Dominique Labadie MD, was born in 1738 in in Veloc, Gascony, France. (in the South of France) He first settled in St Louis, MO. This may have been my family's first connection to St Louis. Then he came to New Spain, Kingdom of New Mexico in Santa Fe in 1765. As a young medical doctor, the 27 year old married my 4th Great-Grandmother, Maria Micaela Padilla, (I love her name) who was born in 1748 in San Juan, Rio Arriba, New Spain, Kingdom of New Mexico. Maria Micaela was the daughter of one of the original founding families of Albuquerque. She was born in 1748, in San Juan, Rio Arriba. They married in Santa Fe on November 2, 1766. and had 15 children. It became very common in the next few years for the young men of St Louis to venture west and marry into the Hispanic families who were rich in land and cattle. She died in 1804 and he died July 23, 1815 in Santa Fe.

I was able to trace that branch of Padillas back to Spain about a year ago but I was unable to connect that Padilla to my maternal branch of Padillas until this week. While doing some research the other night I finally hit the jackpot, in discovering my great grandfather's name was Jose Manuel Padilla. So here is the comparison of my mom's Padilla lineage to my dad's Padilla lineage:

My mother was very proud of her Padilla/Valdez heritage. She often spoke proudly of her great uncles and their importance in shaping the early political climate of New Mexico. The Labadies were as important, if not more so, in shaping the early New Mexican government. More about that later but I do come by my political passion honestly. I only learned about 2 generations of family history and I am guessing it's because that was all my mom knew about. There's no way I would have been able to do all this research without a whole lot of time on my hands, lots of coffee, my trusty little Macintosh laptop with ultra fast internet speed.

I've always known that "Los Padillas" is a community south west of Albuquerque, New Mexico obviously settled by Padillas but I couldn't connect those Padillas to my family in Puerto de Luna, a few miles to the east. This week I discovered "Los Padillas" was settled by my 4th Great-Grandfather Diego de Padilla. His grandparents had lived there prior to the 1680 Pueblo Revolt when the indigenous Pueblo people fought back against the Spanish colonizers in the province of Santa Fe de Nuevo Mexico, present day New Mexico. 400 Spanish people were killed the remaining 2,000 settlers were temporarily driven out of the province. This is where the reality of the history strikes a chord with me. I now know, from the deepest part of my soul that history does in fact repeat itself and it is our job is to learn from the past and use that knowledge to better our future. Our current political climate and division among us is nothing new but it makes much more sense to me because I have a deeper, personal knowledge of the past.

It is no secret that during the Spanish Inquisition some of my Sephardic Jewish ancestors were literally kicked out of Spain due to their religious beliefs, meanwhile some of my ancestors were responsible for these atrocious actions. As if that weren't enough, my Spanish ancestors were then sent to the Americas to convert everyone to Catholicism by the power hungry Spanish government and it's religious officials. They proclaimed the need for a pure and unified Spanish-Catholic race, forbidding intermarriage between Catholics and anyone else, believing this would destroy their ideal of purity of blood. Well, in my case, it worked fairly well for them for close to 500 years, even after leaving Spain. According to my DNA test, I am 26% Native American, so 74% of my ancestors played along with staying in the herd.

As in every situation, some of the settlers had good intentions, others came to the Americas out of greed and the need for power. In the long run, thousands of Spanish explorers and indigenous Americans died in the name of religion. The division we are seeing in our country today is nothing new. But instead of the King of Spain we have a greedy, power hungry top 1% of the population who are more than happy to elect a leader to lead the blood hungry masses into complete chaos in their attempt to divide and conquer for personal gain while using religion as an excuse to hate people. The reality is that no religion teaches us to hate people due to different beliefs or skin color. There should be no walls to keep people in or out. We are all created equal, yet the the fear of lack and greediness of those who are most often in power overshadows the need love one another. My very insightful son said to me the other day that most often people see those with money as the ones to support and follow, when in fact it is the healers and the mystics that deserve our respect and honor. I think that the Native Americans knew that yet they were often forced to change their beliefs or die. My journey is not to learn about those that divided and conquered in the name of religion. My goal is to learn about those that have been the spiritual leaders, the healers that brought people together. I am happy to say I have found many in my personal history that were just that. I am blessed to have their DNA.

So there is your Padilla history lesson for the day! I have interesting stories about many of these Padillas but the basic run down is that Juan de Padilla was born in Seville, Andalucia, Spain in 1558 and for 4 generations after that, the Padillas were in transit from Spain, through Mexico, into New Mexico. I am sure they endured many hardships on their journeys. Those memories live on in my DNA and I honor their memory.