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? Again, it can cause seizures. Okay, got it. 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. 

I love the was rare diseases have cute little logos that give you a visual of what it looks like.



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.



1 comment:

  1. I don’t want people to feel sorry for me, that’s not why I am writing this post. My child six years ago, was born with Bi-lateral closed lip schizepcephaly, which is even more unique than the regular cases. Due to this disability, she also developed Cerebral Palsy affecting the left side of her body. We’ve learned the part of her brain which has been affected has also impaired her ability to reason. We’ve been lucky so far though it affects everyone differently and she had been on the very mild side of everything. Another thing we had to dealt with much are seizures. She was highly prone to having one or multiples and we’ve seemed to look out with some petite mals when she was younger and they occurred in her sleep more than any other time.
    Luckily, everything seemed to be okay after she took an Herbal Medicine. I wish I could say that’s the end of it because she havn't had any symptoms since then.
    Having a child with special needs is difficult. You sit living in fear of the reality your child may face, never really knowing what will happen until it does. Do not expose yourself to more danger, use a herbal remedy that is safe and effective. If interested contact him:
    ronniemd70@gmail.com to find out more information about the disorder and treatment.

    ReplyDelete