Cavernous Chaos

“You never know how strong you are until being strong is the only choice you have.” – Bob Marley

Two years ago I was diagnosed with a Cavernous Malformation on the lower right pons of the brainstem. I recently joined the ‘Angioma Alliance‘ group to learn more about this condition and others experience. I have never posted anything about this publicly but now I feel ready to open up and share my experience to hopefully help and learn from others.

It was January of 2016 when I realized the new year was bringing an unwanted change to my health. I was experiencing frequent headaches which were somewhat alarming to me because I had never gotten headaches in the past and medication didn’t seem to take it away. However, I thought maybe it was hormonal as it was around ‘that time’ of the month.

What started as a slight headache had progressively grown worse and I would wake up crying a few nights in a row as the pain was so bad. In the morning I would wake up hopeful that it was gone, and then be severely disappointed when I got out of bed to realize it was still there. My ears were very sensitive due to the migraine, even the shower/fan in the bathroom seemed so loud. I was miserable. One day at work the headache became a sudden excruciating migraine, but I continued to work through it.

In February 2016 the muscle spasms began. At first, I thought anxiety, or maybe I overexerted myself during exercise. I went to Dr. Google and became more anxious as I re-learned all the signs and symptoms of Multiple Sclerosis. I had learned about MS in college and I was always worried I would have it because I ‘fit the profile.’ So by now I was convinced that I had MS.

Next, I began to notice some weakness on my left side. I particularly noticed the left forearm when I went to dump a pot of spaghetti into the strainer and I was too weak to hold the pot. Eventually, I could hardly lift my left arm above my shoulder without the feeling that something was ‘pulling’ it back down. This made it difficult to wash my hair in the shower or style it. I thought maybe I did some damage to my shoulder. I was also experiencing severe neck pain so I associated the weakness with a ‘pinched nerve.’

Finally, one morning I got up to get ready for work. I felt very nauseous. Got into the shower and my left arm was weaker which scared me. I felt sick so I hurried up and got out of the shower. I sat on the toilet because I didn’t know how I was going to be sick, and all of the sudden felt I was going to lose consciousness. I called my boss from the bathroom and told her I was not going to make it to work. I stayed at my boyfriends house at the time while he went to work. I felt better as I slept but when I got up I noticed my smile was asymmetrical. I took pictures to send to my bf and he agreed, it was subtle but there was obviously something going on.

I was so nervous and terrified at this point I wanted him to come home and take me to the ER. By the time he had gotten home I was ready to walk out the door when he told his family where we were going. His mom somehow calmed me down and convinced me not to go to the ER. I called my PCP’s office for advice/referral to neurology and was told to make an appointment. That night I woke up with severe “spasms” in my left leg- mainly the hamstrings and left arm. The spasms felt like giant contractions that lasted too long and were uncontrollable. I immediately sprung out of bed and tried walking around but could barely move my legs. At the time I was living with my brother and he was thankfully home from working the night shift. I ended up in the ER by 1 am. My muscles were going crazy- only on the left side. My BP was elevated. They drew labs and that was it. I was told that I had low potassium (hypokalemia). They gave me some potassium to drink, which tasted awful. Gave me some pain medicine for the headache, some zofran for nausea, and I believe benadryl. I left the hospital around 3:30 a.m. with D/C papers to follow up with PCP and Neurologist. I somehow woke up for work although the combination of drugs still hadn’t worn off and it was hard to keep my eyes open. I felt like I was in a daze on my way to work and it was very hard to stay awake that entire morning.

After finally finding a neurologist that could see me in weeks versus months, I explained my symptoms, he performed a small neuro exam to test my strength and he agreed that the left side was weaker. I was told all of those symptoms were the result of a “complex migraine.” An EEG was ordered which came back normal. I was not satisfied with the answers I received. I know my body and I was certain that something was not right. Finally, the Neurologist ordered an MRI to ‘put my mind at ease.’

By March I went in for the MRI and they gave me a CD before I left. I took it home, opened it on my computer, and I had no idea what I was looking at but I saw a white circle in my brain that I was sure was not supposed to be there. I thought I had MS. The whole weekend I was so full of anxiety. Finally, I get a call while at work. “This is your doctors office. He would like to see you as soon as possible. Please give us a call back and do not take any aspirin.” WHAT DOES THAT EVEN MEAN?! Cue panic attack.

I immediately called and they wouldn’t tell me anything over the phone. Finally, I was sitting in a room when the doctor walks in. He says “Why is your brain bleeding?” I had no idea what to even say. He was so upbeat about the whole thing. Said he never suspected a brain bleed as I was walking and talking just fine. I was surprisingly relieved and asked- “so I don’t have MS?” He assured me that I did not, but I was trading one difficult diagnosis for another. He referred me to a neurosurgeon, who then referred me again to a surgeon who specializes in cavernous malformations.

I could not believe what I was going through. I never expected for anything to actually come of this. Nothing ever did before. A few years prior, I had similar problems, seen a neurologist, had an MRI which came back normal and was told to follow up with PCP. All of my symptoms were relayed to ‘generalized anxiety’ which I was prescribed medication for, but I am not one to take medicine so I decided that this was something I could conquer without meds. In a way, I was relieved to have a diagnosis that explained my symptoms and to know that it wasn’t all in my head. No pun intended.

So anyway, sitting in my Neurosurgeon’s office I began to cry my eyes out as he told me about the possibility of surgery and the associated risks. Due to the location, the surgery would be a high risk and not an option at this time. If surgery is ever an option the one thing he was confident that would happen would be losing my hearing on the right side, as he would have to drill through my Eustachian tube. Other complications could be blurred or double vision, facial weakness, and the worst possible outcome- a feeding tube as I could lose my ability to swallow. Oh, and death. Taking it all in- in disbelief, I could not maintain my composure. Hearing this at just 24 years old was life-changing.

More tests were ordered to verify that it was indeed a cavernoma. First, another MRI with contrast. Second, CT scan of the brain, which makes you feel like you’re peeing yourself. Finally, a cerebral angiogram where they puncture a catheter through your groin (or wrist) and check out the blood vessels. This one was fun. I got some drugs, had them play reggae music and drifted into a twilight. I was aware but there was no pain. I felt peaceful, actually. Once he finished and they were about to take me back to my room in the hospital for observation and he said “there’s your brain,” pointing to a giant white screen with my brain all lit up, and I stared at it in awe. It was actually quite beautiful to see.

So it was finally confirmed in April of 2016. Cavernous malformation of the brainstem, right pons. No AVM, no fistula, no anuerysm. Just a low flow cluster of capillaries that didn’t form properly and one day decided they were going to let a little blood leak out and see what happens.

I had a second opinion at U of M who also confirmed that I am not a candidate for surgery at this time because: 1) size. They would like a bigger challenge. No, the real reason is that it’s too deep in the brain. If it were bigger it would be easier to access. It’s not worth the risk to pull it out unless it grows or bleeds again and causes symptoms. 2) location. Again, it is right on the brainstem deep down in the brain. Even an experienced surgeon admits that scares him and he wants nothing to do with it if he can avoid it because there is a 50% chance of having some complication whether it is minor or major due to its location and all the brain they’d have to go through to get to it. 3) Asymptomatic. They cannot make me better than I already am. Although I have minor symptoms, they are not significant enough to consider surgery right now as my quality of life is still good.

So now I live with the anxiety of another bleed or this thing growing over time. It is known that if your cavernoma bleeds once, it is likely to bleed again. I do believe the chances of a recurrent bleed decrease significantly after two-five years from the first one. But there is really no certainty on this, and that is what kills me- the uncertainty about cavernomas in general!

I wake up almost every day and look at my smile in the mirror. Not to start the day positively with a smile. But to make sure it is still symmetrical. If I go out and have a few alcoholic beverages I get anxiety that I will wake up with another bleed and feel guilty about drinking. I worry constantly about the possible effects this cavernoma could have on my physical appearance/ability to do things independently/cognitive function/life in general. It is a tough diagnosis to live with. I have had many dark days, but try to keep them mostly bright.

As I end this post after waiting to publish it post ‘annual follow-up’, I was hoping to share good news. There was some. The brainstem cavernoma has not grown since it was discovered and there was no evidence of a recurrent bleed! The bad news- there was a new finding. I now have one on the left temporal lobe and have to watch out for aggression, speech and memory problems, and right-sided symptoms such as numbness and tingling, etc. This means I likely carry the gene and could develop many more. I will now go see Dr. Awad at the University of Chicago to establish myself with an experienced, highly rated neurosurgeon- just to be prepared.

As I continue to read other people’s stories in the Angioma Alliance group they give me hope. Most people go through a rough time at first but the story doesn’t end there. Most are uplifting success stories. The ones I’ve read about going through with surgery have shown me strength that one could only understand being in a similar situation. It’s all about mindset. Maintaining a positive mind will lead to a positive life. There’s no doubt about that. “What you think, you become.” – Buddha.

To be continued…. (or not, hoping this new finding and the original finding cause no more issues and nothing more is discovered so I can move on with my life and never look back).


DIY Toothpaste!

I don’t like to use regular toothpaste because of the fluoride (an industrial toxic waste product, which is a poison, and can cause neurological and endocrine dysfunction) and other unnecessary, cancer-causing ingredients.

I started using organic toothpaste, but after learning the many benefits of coconut oil toothpaste, I decided to give it a try! Some of these benefits include: attacking streptococcus bacteria (a major cause of tooth decay), no harmful chemicals, anti-cavity properties,  and cost efficiency!

And here’s something slightly personal- fluoride can cause dental fluorosis, which I had a mild case of since I was a kid. I did not realize that once I started using my homemade toothpaste my teeth would become naturally whiter and I no longer have those disgusting lines on my teeth as bad as I once had!

I’ve officially gone coco loco.

So now I’ll tell you how I make my toothpaste (the simplest way possible).

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All you really need is coconut oil, and baking soda. A small zip-lock bag, spoon, and a curious puppy 😉

Continue reading “DIY Toothpaste!”

State of Grace

When I was younger I always kind of looked at those who practiced meditation as “quacks.” I never gave it much consideration. Little did I know, meditation would become something I would strongly adhere to as I became older because of it’s variety of benefits.

Why meditate: I like to think more about the spiritual aspect of meditation than the physical benefits- though both are wonderful. Spiritually speaking; in the most superficial sense, meditation allows for the connection between the body and soul. This is done by bringing the mind, body and senses into balance. This connection is
important to our very sense of ‘purpose’. The goal of meditation is to heighten consciousness.. to awaken and recognize the soul, simultaneously allowing the soul to recognize oneself. Through meditation, we are open our minds to new possibilities, and we begin to hear our higher self. Meditation is not a religious endeavor, although the two may or may not go hand in hand– prayesoulr itself can be considered a form of meditation. Through meditation individual’s may feel as ‘one’ with their surroundings- in other words, they obtain a deeper awareness that there is no difference between an object and an individual, they simply observe their surroundings without judgement, but with appreciation, accepting everything for what it is. Meditation is the journey to self-realization, allowing one to transform their mind, typically leading to a more positive experience, along with a deeper understanding and connection to our inner-self.

Throughout the day- and even during sleep, the mind happens on it’s own, generating thoughts whether one is consciously participating or not. Typically, this may result in unnecessary, unwanted stress. During meditation, the mind will continue to wander, yet the thought process is slowed down and allows for a ‘focused wander’ as you are only thinking about the present moment.. the “here and now.” This would be referred to as mindful meditation.. leading to a sense of peace, calmness, and security.

Physical/mental benefits: People often turn to meditation for the immediate, physical and emotional benefits, and there is good reason to. Neuroscientists believe that the mind has a “negativity bias” where we tend to focus more on the negative things than positive. Most of the time we are unaware of the neurological activity going on inside, which can lead to failure of recognizing when our bodies are stressed. Usually there is a physiological response from our bodies signaling stress- anxiety, panic attacks, “stress marks,” hives, etc. Meditation is very beneficial in the pursuit to overcome stress and negativity resulting in a multitude of physical and emotional benefits. Some of the most common benefits include:

  • Increased concentration– this is a good one for us bloggers! My favorite part of meditation is pretending time doesn’t exist. With this perspective, there is no struggle to think creatively because everything you need comes to you naturally. Meditation results in a higher state of consciousness where the creativity is forever flowing. It also allows for a heightened ability to focus, and slows down the decline of our cognitive function due to aging and increases gray matter!
  • Improved quality of life– through the reduction of stress, there are tons of resulting benefits- lower blood pressure, improved immune function, etc. that work to improve our physiological well-being. If you want to know more, Google it. There’s tons of benefits so I won’t cover them all right now because there is brainwave synchronization illustrationliterally something for every system in the body. This article does an excellent job explaining the neurological aspect with lots of research to back up these claims!
  • Decreased depression, and anxiety! I have met numerous people who have turned to meditation in order to cope with these two mental illnesses in particular. Anti-depressants aren’t for everyone, so meditation is their best alternative. I have turned to meditation for anxiety purposes and I couldn’t be more happy with my choice.
  • Positive lifestyle– after meditation the tone is set for a good day because of the positive state of mind you are left in, which may lead to more positive interactions.

Tips on how to focus: Use a candle! Your mind will always wander and generate thoughts.. because that’s what it does. Meditation allows one to disengage from their stress-provoking thoughts, through focusing on only one thing for a period of time. This is what will lead to improved concentration in the future. You will be well-trained in taking yourself out of stressful situations, quieting the mind, thinking more clearly, and you can learn to focus solely on relaxation techniques. Focusing on the flame of a candle during meditation will bring the mind back into focus whenever it starts to wander. I particularly enjoy using a candle because it allows for an expansion of awareness leading to all kinds of insights. If you prefer to have your eyes closed, you can also focus on your breathing, or your heartbeat while shifting your gaze toward the third eye! Mantras also help- one of the most commonly used being “Om” — which also has various benefits in itself that I will talk about later on. Also, try not to focus on the outcome, simply focus on just “be”ing. purpose

Finding TIME to meditate: You may think you don’t have the time to meditate, but there is always time. Meditation is one of the most important things a person can do. This should top any priority list, because in the grand scheme of things it won’t matter how fat your bank account is, or what material possessions you’ve acquired. What will matter is the connection you’ve acquired with your soul and spirit, and the consciousness you’ve gained. Once you give meditation a chance to work and you experience the benefits for yourself, you will always make time. Especially because you will anticipate that relaxing and peaceful sensation. Whether it is randomly during the day when you have an extra couple time medof minutes, in the morning when you awake, or at night before going to bed– just don’t lay down! You don’t always have to have long meditations, some days may be shorter than others when starting out. Just remember to keep an open mind and really give it a chance to change your perspective. I guarantee you will be glad you gave it a try. One thing I recommend is finding a way to make it part of your routine. For example, right now I like to do my meditation at night as a way to end the day on a positive note. After my meditation, I like to enjoy a nice steamy shower- it really allows for some intense relaxation and stress relief! Then after my shower, I will enjoy a delicious cup of hot tea (favorite brands are yogi and stash) to benefit my body. I love having tea because it leaves me feeling rejuvenated! It is the best way for me to keep myself in a relaxed, calm, and peaceful state of mind at the end of the night, completely taking the edge off from all the stress during the day, and completing my zen time!

How I do it: When I begin my meditation- either in lotus (sitting cross-legged), or corpse pose.. I take a few good deep breaths- inhaling through the nose, and exhaling through the mouth as a “Haaaaa.” This allows the physical body to go into a deep relaxation, while awakening the main energy points of the body- the chakras. With every exhale, I imagine the tension Caduceus-kundalinileaving certain parts of the body; first the face- the eyes, jaw, and mouth. Then the neck, the shoulders, arms, fingers.. and so on all the way down to the toes. I also like to start out by telling myself to be focused on the present moment, to be in the here and now, and that there is no such thing as time (so that I don’t begin to worry about all the things I need to accomplish). Additionally, that all my worries are “outside” in the external world, where I am leaving them, and taking myself out of for the moment.

When looking into a candle- vision blurred, I like to make comparisons between the candle and the human body to keep focused. How they relate, how the candle can be used as a metaphor for the human experience. Hence, my previous post: The candle and the flame.There are so many ways to go about these comparisons and contrasts, I try to keep mine more positive. Also, keep in mind that each meditation is different!

Once finished with my meditation, I take one last deep breath in and let it out, releasing all the tension and negative energy that’s leftover. Placing my hands together as if I’m about to say a prayer; I place them over my my third eye, bow my head and bring them down to my heart. This is to increase the flow of divine love– “we are all one when we live from the heart,” and it’s simply a gesture for the term “Namaste” — which is to show a deep form of respect. I like to use this gesture to show appreciation for this life and everything I have, and for allowing me to “be” and I thank myself– good self-esteem and confidence booster! Finally, I lean forward from the lotus position and place my hands on the ground- still together in prayer, connecting my body and soul with the heavens and the earth. At the end I like to affirm with myself (for anxiety reasons) that I have nothing to worry about, and that the universe always takes care of me. Whenever something goes wrong, there is always a reason, and everything usually falls into place for the better.

Happy Meditating!


You’re Grounded! Root Chakra Healing

It’s a beautiful day to get back to our roots! 🙂


Our connection with self and with our surroundings, an under active root chakra will have you feeling angry, depressed, anxious, and completely unconnected with the world around you. Think about where it is located; the base of the spine. When we are seated, this energy channel is literally connected to the earth. This chakra calls for us to feel grounded and may be blocked by fear.

Before we can begin to open this chakra, you must ask yourself what it is you’re afraid of? Is there something that happened in your past that’s holding you back? It can be very difficult to bring up memories and feelings that cause you pain, but it is completely necessary if you want to move forward from a place of love.


Meditation: Begin seated comfortably in a position where your spine is erect and you can breathe fully and comfortably. Light a candle…

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What’s your motto?

(This is totally my motto.. in addition to, simply: “Do what makes you happy, for you’ll be criticized anyway”)

(Although I don’t know whether this is totally glum, or optimistic?!)

..And right before I saw this I was just pondering.. because I saw an angry facebook status about how much everyone sucks and how the world should just end. Here’s my thought: I agree the majority of mankind is hopeless. That being said; that’s why you  Continue reading “What’s your motto?”


Vibrational Healing

I found this article very interesting so I thought I’d share it.

It elaborates more on frequency and physicality with a medicinal approach, elaborating primarily on Dr. Royal Rife’s work. In the 1930’s Dr. Rife created a frequency generator which was said to cure 1,000 patients with “incurable cancer” using vibrational medicine. My favorite part of the article is this statement:

“If you have two tuning forks and you knock one of them to get it vibrating, you only have to hold it near the other tuning fork for it to start vibrating, too. The vibration frequency radiates from the source to all objects around it, causing those objects to vibrate in harmony with the source. This is essentially what the portable Rife and the MWO machines do, too: it broadcasts a high energy healing frequency , entraining your mind, body and even the physical space around you to a frequency that’s more in tune with healthy vibrations.”

Some more relatable articles that I found interesting:


To support my last post.

Just wanted to share this article I came across today in order to support my previous post. This article explains how yoga actually reshapes the brain, making the areas that control empathy, emotion, and compassion larger when you practice yoga and meditate. I have truly noticed a difference in my perception of the world, and how much of a connection I feel after my yoga and meditating. Amazing!

(Check out the comments too, and if you’re on facebook, like the page “Yoga Philosophy.” I’ve learned a lot from it already).


Yoga, a fine art

A blog post from one Naturopathic Physician I have recently been in contact with.

I wanted to share this because it simply explains the beauty of yoga practice in the eyes of a professional who is devoted to helping others reach their highest well-being through a natural course.

The benefits of yoga are limitless. Other than physical well-being, yoga allows you to disengage from your thoughts and provides the ability to focus for longer periods of time. Since I have started practicing yoga regularly, I have noticed a deeper connection to the world around me, a more positive outlook on life, just an overall contentment and happiness. Even when working on challenging poses that provide exceptional benefits to the body, yoga is a peaceful workout at the same time. I can’t put enough emphasis on how beneficial yoga is for the human body and soul.

Please check out this blog, as there are many other informative posts on the art of yoga that will provide you with a satisfying understanding of the art and why you should try it out and really give it a chance! While your at it, check out the rest of this website to understand that you have a choice in the healthcare you receive and how naturopathy can be very beneficial to you! 🙂