I Was Interviewed by a News Agency About Cyclic Vomiting Syndrome!!

Veterinarian deemed attention seeker due to rare condition that caused her vomit up to 12 times an hour now cures herself with natural diet.

Media is a big deal. Right? We all tend to watch and listen to it – even if we don’t like it, or don’t necessarily believe it. Awareness is a big deal too. And for those of us attempting to spread accurate information far and wide about our misunderstood and stigmatized disorders – the media can be an especially helpful tool for doing so. However, I can tell you from experience that sometimes you really have to put yourself out there for the sake of the cause… for the end game… and it’s not always easy to do that. The anxiety struggle is real. Very real…

Out of nowhere, I received an email from Nicolas Fernandes with Caters News Agency, asking me if I would be willing to do an interview with him regarding my experiences living with Cyclic Vomiting Syndrome. When I asked him how and why he chose me, he responded that he saw my blog, and thought I would be interested. After a quick search confirming legitimacy of the inquirer, I gladly accepted the unique opportunity to share my story with “the world”. After all – we need all the awareness we can get, right? And this is a golden opportunity!

After accepting, I immediately became nervous and full of anxiety about the whole thing… What will I say? How will I accurately and fairly represent myself and the CVS community? How do I decide upon which topics to focus? How will it be received by those with CVS and by those who’ve never heard of it? Will it be helpful? What if what I say is misinterpreted? What if I’m misquoted? How do a bring the best message I can bring?

With those thoughts racing around inside my head, I prepared by writing down what I would say. I created a speech for a 3 minute video and I repeatedly recorded it until I was happy with it. I spent about 2 hours trying to make that 3 minute video, 1 hour on the phone answering Nick’s questions,  and about an hour gathering pictures. I wanted it to be perfect, but was also well aware that the end result would largely be out of my hands. I then determined to let it all go, and relinquish the final result as something beyond my control. I simply hoped for the best.

And then it was published… And uhhggg…. I didn’t really like it. 😦

I was told the focus of the article would be how I’m improving my chronic illness through a well-rounded, holistic, and natural approach to medicine – as opposed to a traditional approach to western medicine. But after reading it for the first time, I was concerned that the message sent wasn’t the one I was trying to send… My immediate thoughts went something like this:

  • Holy crap, the title is a mile long!
  • It sounds fantastical.
  • I’m not cured! Cured?? What??
  • Oh no, this looks like “click bait”!
  • Ummmm, that’s not what I said…
  • …or how I said it…
  • That’s not what I meant…
  • My God, what have I done….???

My main concern is that the article misleads others to believe that changing to a healthy diet without doing anything else can lead to a “cure” for CVS. In reality, the improvements I’ve experienced are a result of many things I’m doing, and I perceive all of those things to be equally important (for me). My treatment includes a well-rounded holistic approach involving several modalities – including plant-based diet, hiking, yoga, meditation, running, natural supplementation, and use of essential oils. That’s not to say I think that list is complete or 100% accurate, but it’s what’s been working for ME.

You see, the first thing you need to know about CVS is that it’s complicated and multi-factorial. Meaning, it manifests differently in each of us according to our unique set of problems, and we are all helped by different things. Confusing? Yeah… to say the least. Hence, why no one can figure us out. Imagine being in our shoes… And when all the test results would indicate us to be “normal”, we inevitably are forced to cope with the accusations of exaggeration and malingering by the only source of help we have available to us. Those accusations (of me) were wildly incorrect. Which brings me to stigma….

They mentioned the stigmatizing experiences I was previously subjected to, but I thought the way the article was written made me sound like a “victim”, rather than a strong and independent warrior who has successfully taken her health into her own hands. Whine-ing is something I have avoided doing within my CVS journey, and it sounded whine-y to me. Perhaps I was reading too much into it, but honestly I was disappointed, and a little bit embarrassed.

But then I read it again… and for some reason it didn’t seem quite so bad the second time… Perhaps because I really wanted it not to seem so bad…. So, I read it again – but this time I pretended I was someone who doesn’t know me and has no idea what my goals were for the article… and that’s when I realized something very important: No matter what I wanted it to say, the article contains vital information about how to treat CVS in a natural way. In that moment, I realized how to overcome my anxiety about the whole thing and focus on the important thing…. which is AWARENESS!! I focused instead on how this article will suggest a method of treatment perhaps not previously considered by others which could help them… and that even though the method presented within the article isn’t an exactly accurate representation of what I’ve been doing – it doesn’t matter because they don’t necessarily need to do all the things I do anyway. The article will simply lead them in the right direction to research and learn about treatment of CVS through natural medicine, and they can experiment to see what works for them!

It was also an important reminder for me that anxiety is IN-appropriate. That’s why it’s a disorder. The most important thing was always to share information to the best of my ability, bring awareness of CVS to others, and hopefully help some folks along the way. When I brought my focus there, I was able to overcome the anxiety I was feeling.

It’s impossible for me to know how many total people this article might eventually help… But, I can tell you that since the article’s publication, I’ve had a handful of folks reach out to me – either for more information, or to tell me they were either helped or encouraged in some way through reading it. The traditional saying is: If it helps only one person, it’s worth it. I agree whole-heartedly. Knowing that anyone at all has improved the symptoms of CVS through information I provided is a powerful motivator indeed. I remember when I was the one searching for the same information… it was worth everything to me when I found/realized it. Because that information is what has given me the opportunity to live a quality life with a chronic illness.

In fact, I’m happy to report that I’m currently living a FANTASTIC life, and have broken my record length of 6 months between episodes, as of June 1st, 2018!! I’m going for the gold now… I’ve set my sights on making it one entire year without a CVS episode. I know I can, and I hope I will.

This article obviously isn’t my first attempt at bringing awareness to my circles about Cyclic Vomiting Syndrome… I’m a member of several Facebook groups, I created my own CVS Warrior Facebook page, I created this blog… I’ve previously been very active and shared my story in Cyclic Vomiting Syndrome Association (CVSA) message boards. My story has been published in a book about CVS which you can search (Rare But Not Alone) and buy on Amazon. I’ve designed t-shirts and created fundraisers selling them for CVSA, hosted a Run For the Bucket 5K to fund raise for CVSA in my tiny home town (I was the only runner), and I’ve shared my story on my own personal page to my friends and family. Not every effort has rendered the results I was hoping for, but each time there’s always been at least one person who reaches out to let me know it made a difference to them, and that makes it worth it every single time. With each new effort, more and more people are reached – not just one person. That’s why I’ll never stop sharing… Our numbers are growing. We are many warriors, growing into a formidable army of truth sharers and stigma squashers.

So, to recap:

  • a few short emails
  • one, hour long phone conversation
  • 2 hours making a video (only took that long because I’m an obsessive perfectionist)
  • 1 hour gathering pictures
  • 15 minutes creating 2 Facebook posts (warrior and personal)

That’s all it took to create an article which has now been viewed by over 6000 people from my Facebook page alone. That’s right folks, you heard me correctly! My stats show over 6K views on my little ol’ warrior page!! It’s received 69 comments and has been shared 59 times from my page source. I have no ability to know how far it’s spread beyond that, but one of my previous classmates from vet school sent me a message telling me my article made it to her Mom’s veterinary group that has over 9K members, and that I was famous! I was shocked! So, yeah, it’s circulating out there. People are seeing it, and people awareness is being accomplished! And THAT’S what was important in the end.

Click here to read it.  And don’t be shy, please share it!  Let’s keep it spinning far and wide, so it finds everyone who needs to read it! A very special thanks to those who’ve already shared. ❤ My heart is yours. #CyclicVomitingSyndromeAwareness

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“Vomiting Seizures” CVS Awareness Day 2018

Another year… more episodes…

Usually for awareness day I choose a particularly brutal episode from the previous year, and attempt to convey the horror to you without scaring you away from the topic entirely. This year I had several topics to choose from… I could have written about:
· That time I booked my flight and secured vacation one whole year in advance… and flew home for the 10 year reunion of my graduating veterinarian class – only to miss the official night of the event due to an episode. Good news is I was able to see and catch up with most of the gang the following day.
· Or the time I booked my flight and hotel, secured leave a year in advance, and payed $400 of non-refundable fees for Continuing Education Conferences – only to miss the first day of the conference and several (paid for) CE hours due to an episode. Good news is that I didn’t miss the 2nd day, which contained some of the most valuable research and information I’ve come across to date on the science of “energy healing”. (www.bengstonresearch.com)
· Or the particularly difficult time my husband flew home to visit his family, and the stress of maintaining my normal routine plus accomplishing additional chores inevitably threw me into an episode while I was all alone. And I learned that a friend I thought I could count on really didn’t understand at all. Good news is that I have awesome neighbors.
· Or the super disappointing time an important friend from veterinary school happened to be in my neck of the woods, and we had the opportunity to hang out and catch up after over 10 years since seeing the other. And we chose to climb Mt. St. Helens together. And then 1.5 miles up, I began having an episode and had to come down – I then had to attempt walking downhill for 1.5 miles while an episode was beginning and intensifying. Good news is that I convinced my friend to continue onward and upward – and she still made it to the summit! While I meanwhile made it to the Jeep – which became my safe place to lie and vomit and await rescue.
· Or that time I spent Christmas Eve in Portland with a friend. And there was a sudden snow and ice storm which closed roads and prevented me from pickup up my husband from the airport that night. And then I started having an episode and couldn’t drive, and my friend had to drive on the ice to the MAXX station and wait with me in the freezing cold for hours while I vomited and shivered. And my husband had to get off the plane and ride the train to me and then drive me home on the icy roads for an hour. Good news is that some friends really are true friends, and can be counted on to help out in a sticky situation.

Rather than tell stories, what I really want to tell you about is my journey deeper into the world of natural, holistic, and energy medicine. But that could take ages, and would bore most of you to death. Suffice it to say that I am continually surprised at the arrogance of humans to ignore the wisdom and effectivity that lies within natural and alternative therapies. People are lazy. They want to simply take a pill and magically become better. That’s a ridiculous notion when you think about it with common sense. We must work for our health as we would work for anything worth having – and it is very hard work indeed.

Fun fact: Did you know your stomach and intestines contain over 500 million neurons? That’s 5 times more than the 100 million neurons making up your entire spinal cord! It’s an entity of its own called the Enteric Nervous System and has been nicknamed “The Second Brain”. It’s strangely gone largely ignored by the medical community until recent years. That’s likely because of how poorly it’s understood.

Do you care about this information? If not – maybe you should… Because knowing and understanding it could be the key to prevention and management of this disorder and many other chronic illnesses. And the truth is – even if you don’t have CVS – you or a loved one could easily become the next to be affected by CVS or a similar disorder.

I’ve decided to begin describing my CVS episodes as “vomiting seizures”. Because that’s something you can probably understand and relate to in your mind. As opposed to CVS… Most of us have either seen some type of seizure occurring in someone we know personally, or via an actor on television. We know (without truly understanding why) that those with epilepsy go “from normal, to seizure” like a light switch was flipped.

It’s similarly difficult to understand how someone with CVS who goes hiking on the weekends and is learning to be a mountaineer can instantly begin vomiting and become bedridden for no apparent reason, requiring intense care and careful attention for hours to days… But if you think of how the same is true for people with epilepsy who suddenly have a seizure, you might begin to be able to get an accurate glimpse of what this disorder can be like.

I lack the ability to describe with words the horror and torment that is “an episode” – but I’ll try anyway… It’s a seizure of nausea. Some have pain, but for me it’s nausea. It’s a full blown traitorous attack of my nervous system against my body – which causes each and every part of me to feel consumed with overwhelming nausea. I feel possessed, consumed, panicked, desperate, crushed, crippled, suffocated, useless, and incapable of normal function. The desperation for the intensity of the nausea to dissipate is likely the most intense feeling of all. That is – next to the nausea.

The nausea is everywhere, not just in my stomach or throat. The intensity is greatest in my upper abdomen. Instinctual behavior takes precedence over conscious control. “Survival” is the only thought that can occur. Making it to the next moment seems like an impossible feat, when simply moving causes my body to wretch, convulse, and expel the contents of my stomach every few minutes. My skin is crawling, and my muscles are twitching of their own accord. I can’t be still no matter how much I want to… not matter how hard I try. Breathing is the only thing upon which I can focus. When there isn’t even a few moments respite from the most intense nausea known to humankind – after several hours, and then days – it becomes hard not to wish for death. I try within my mind to shrink into a tiny ball and find a deeper place within myself to hide from the horrendous reality which my senses have created for me. Mentally, I’m in a fog. I won’t choose to speak unless I think what I have to say will lead to an immediate or eventual decrease in my suffering. I can respond when spoken to, but it is at great cost. The toll of achieving formed thought and the effort of response are nearly always a spike in the nausea and vomiting. I can walk, if I must, but the toll is great when I do. I can drive, if I absolutely must – but this is a terrible idea for many, many reasons. And, again, the toll is great. I’ll then beg and pray to God and every power within the universe for quiet, peace, dark, still, calm, rest, and sleep to come – and for the episode to end, but these things aren’t always easy to obtain even in the best of settings during the best of times. And they’re next to impossible to obtain when the body is exploding with constant nausea and uncontrollable muscle movements. I’m cold, then freezing, then shivering and shaking. Then I’m hot, then sweating, then claustrophobic and suffocating from the heat, and soaking wet from the sweat. Then I’m freezing again, and now I’m wet and so are my clothes. Now the sheets are soaked. I’m even colder now. I get dry and warm, but quickly become hot again. I need to be naked with blankets and towels available. I need fluids rich with electrolytes and a bucket to vomit it immediately back up. I need to maintain my hydration and potassium at all costs to prevent a trip to the ER and a hospital admission. I can’t always control my surroundings, and despite occasionally being able to influence them – I can never control the attitudes of those around me. I know from history I must be prepared to breathe and ride this gnarly wave for another 12 -24 hours… I must learn to accept the episode as it happens, while still hoping it will soon end. I must learn to detach from time, and find that deeper place of survival…

This disorder still is largely unexplained, but we’re making advancements in the research. Some think it’s a form of anxiety disorder – which is an astute observation on their parts – but it’s so much more complicated than that… This disorder is multi-factorial. That’s why we all seem to manifest it a little bit differently. We know now that this is a form of dysautonomia of the brain-gut axis. That’s basically the medical way to describe a seizure of the stomach and guts.

I look forward to the day this disorder is given a new name… To one which better describes the etiology of CVS with regards to neurologic involvement. I’d love it if I could somehow cause the term “vomiting seizures” to become popular within the physicians of the CVS medical community. I’ll be sharing the term with my doctors, and I hope you’ll consider doing the same. You might additionally consider using the term to describe the disorder to friends and family. I think that presenting the information in a way which others can relate will be helpful to dispel the myths which arise from the “fear of the unknown”. I hope that doing so will lead to a decrease in the phenomenon of “unexplained” disorders becoming stigmatized. Ultimately, I hope patients of these disorders no longer fear becoming the subjects of stigma.

It’s my personal opinion that future CVS research should be focused on investigating if these episodes should be re-classified as a form of seizure disorder which is connected with mitochondrial, emotional, and hormonal health, while also linked with anxiety and hyper-excitability of the nervous system.

Have you ever heard of a Focal Onset Aware Seizure (aka Simple Partial Seizure)? It is described on www.epilepsy.com as:
· A seizure that starts in one area of the brain and the person remains alert and able to interact.
· Usually known to be brief, lasting seconds to less than 2 minutes.
· Many treatment options available, including medications, dietary therapy, surgery, and devices.
· Anyone is at risk to get these, and the cause is often unknown.

The article mentions that nausea and migraines can be mistaken for partial seizures. Well… maybe that’s not actually a mistake after all… CVS is known as a migraine variant in some circles. What I’m suggesting is that it’s possible CVS should be reclassified as a previously unseen form of partial seizures. The similarities between my mentation during episode and those described in partial seizures are uncanny. Perhaps we got it wrong (as we often initially do) when classifying these types of seizures as typically brief… Perhaps these longer episodes of dysautonomia should be considered as being a different form of partial seizures…

Perhaps the modern paradigm of western medicine will soon shift to include awareness and equal incorporation of the natural techniques and therapies which prevent and treat the majority of the illnesses which we see occurring today. Perhaps most of us will soon be herbalists, yogis, Jedi masters, Zen Buddhists, channelers of healing energy, vegetarians, or climbers of Mt. Everest. Perhaps there will be a balance between that and what currently is. Regardless of which way others choose for themselves, I know that the ancient (and not so ancient) world of natural medicine combined with the technology of today could produce worldwide and life-changing medical advancements.

Throughout this journey of CVS, I’ve learned that our bodies are much smarter than we are. I’ve learned that the mind and body have powers of which we are largely ignorant, but which we can learn to manipulate for the intent of healing and increasing happiness in the lives of myself and others. I’ve learned of many phenomenons which are unexplained by current scientific knowledge – yet are reproduced consistently in a prestigious research setting, and I’m hungry to learn even more. If you also find these things intriguing, you might enjoy perusing the following websites: (www.scientificexploration.org) (www.princeton.edu/~pear) (www.issseem.org) (www.energypsych.org)

With each new installment of understanding I gain new insight, strength, power, and hope. Even with the devastation of each new episode, I still think I’m getting better each and every day. I think I’m getting closer to my goal of living CVS free. Those are empowering thoughts, since before I was simply resigned to a life of being a prisoner to chronic illness.

I’ll soon be learning all about Traditional Chinese Medicine, and will have my first acupuncture appointment next week. I’m excited for the possibilities which lie therein!

These are the things I’ve found to be helpful for me. I don’t claim they’ll be helpful for you. But I hope they will. That’s why I share the information. Please remember that this is multi-factorial. We’re all different, and we respond to things differently. Don’t take my word for it. Or anyone’s… You are just as smart as they are. Read. Learn. Experiment. Keep what works for you, and put the rest aside. Consult with your doctor, but also learn what they know about the topic for yourself. You can. Listen to your body, and don’t let anyone change your mind when you know something is right/wrong or good/bad for you.

To all my CVS Warriors: You’re all my brothers and sisters in sickness and in hope. I hope this finds you well. I hope this inspires you to find your own way to empowerment and healing. I hope everyday people and also doctors will read this. I hope they care. I hope they listen. I hope things change for the better. I hope these hopes to God and the powers of the universe with the great silent voice which is within me.

Hear my hopes… Please.

Introducing CVS Speaks!

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Introducing CVS Speaks! A social media outreach organization dedicated to connecting CVS sufferers and their families with online support groups and media resources. It is a volunteer organization seeking to raise awareness of Cyclic Vomiting Syndrome, and to help all people of CVS to find the support group that fits their needs. CVS Speaks also assists and supports the Admins of a variety of groups to help maintain the highest quality groups of Facebook.

The CVS Speaks – Think Tank is a sub-group of CVS Speaks where many minds can come together to brainstorm ways to raise awareness of this condition, and discover tangible ways to campaign, educate, and raise awareness within the medical community and the general population. Please join today and post your ideas here!

We all need support, and these groups are a great way to meet others with CVS, ask questions, and share ideas. I encourage you to click the links below to visit and join the Facebook support groups today!

The following groups on Facebook currently make up the collective network called CVS Speaks:

Email CVS Speaks at: cvs.speaks@gmail.com

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