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.

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Puke on a Plane

March 5th is the official International Awareness Day for Cyclic Vomiting Syndrome, aka CVS. If you’ve never heard of it, you’re among the vast majority. Those of us who are familiar with it – well… we wish we weren’t.

To learn the basics about CVS, you can refer to this page of my blog. However, the purpose of this particular post is to spread awareness, so I would like to make you aware of some of my recent experiences with this debilitating chronic illness.

On two separate occasions recently, I was that person on the plane. You know, the person who is vomiting, and no one wants to sit beside. The person who is retching violently with her head stuck inside 2 layers of garbage bags. The person everyone is terrified is spreading a dangerous disease among the passengers. But this isn’t airsickness… it’s Cyclic Vomiting Syndrome.

The image comes to mind of a person using the index fingers of each hand to make a cross in front of their body, in order to create a “barrier” between them and some perceived evil. Like a priest holding up a cross to the demon in front of him. I felt as as if all the other passengers were doing this towards me, even though none of them actually did. Sometimes it’s not even stigma, but perceived stigma, that can cause a Cyclic Vomiter to suffer the consequences of that stigma. It sometimes can also cause us to stumble upon some nugget of insight, or into a pool of misery.

Please allow me to re-create for you how these experiences unfolded, and how they made me feel. No, this isn’t a pleasant topic. But it’s the truth. It’s what happens to me. I desperately want others to understand what it’s like. Not to gross you out, or make you feel sorry for me. Simply to make you aware. This happens. CVS is a real thing. It’s not in our heads, and we haven’t done it to ourselves. Our voices deserve to be heard, and we deserve the support and awareness that is deserving of ANY chronic illness, regardless of how it is named, or what it does to our bodies.

************

I prepared and organized everything as best I could to reduce the stress involved in this travel situation. However, if you’ve ever attempted to move from Alabama to Washington State, and purchase a home – sight unseen – due to a timeline limitation, you’d understand that there isn’t much that can reduce the stress of that situation except for careful planning, motivation, attitude, and simply attempting to stay on top of the details. But stress is a part of life. I can’t avoid it, and I’ve done well with this. I’m proud of how well I’ve done this far, and my husband and I will get through it eventually. It’s not going to be easy, no matter what I do or don’t do. I can’t hide from life, and will live it to the fullest, despite my disorder. Regardless, I was completely (and perhaps overly) confident I would make it through the ordeal without incident. – until this happened…..

I chose a salad from the menu of the random airport restaurant, thinking it was a safe dietary decision based on past triggers. It’s a “meal” type salad, and when it arrives there is a mountain of quinoa on top and I notice that it looks “heavy”. After a few bites, I began to feel “that feeling”. “That feeling” that is all too familiar, easily recognizable, and impossible to confuse with anything else. Subconsciously, I began to plead with the universe and pray my soul’s prayer that it will “just go away…. just go away….”. It didn’t just go away…..

Rewind to last summer… when I flew to Washington State and worked there for a month. While I fell in love with the area, and had some fabulous weekend hikes, I was a mess of stress during the 13 1/2 hour weekdays in an unfamiliar work environment. I had been misled by my superiors about my duties for the month, and was expecting a maximum of 10 hour days. I was also left virtually unsupported by my temporary supervisor, and felt very alone in my predicament. I expected an episode to occur at any moment during my time there as a result of the high stress. I was pleasantly surprised when I completed the month without incident. I thought I was home free! It also felt like a major accomplishment to make it through such a difficult and stressful period without any episode whatsoever. I saw it as an improvement in my condition, and saw it as proof that I can still tackle the opportunities in life that are made vastly more difficult by my disorder.

When I arrived at the airport in Seattle, I learned that my flight had been changed, and I would have to spend the next 12 hours in the airport waiting for my flight. But – I was headed home after a whole month, and nothing could get me down! It’s all about attitude, right? I was happy and healthy. I decided to walk and visit the entire airport. After 10 hours, 3 meals, and about 4 alcoholic beverages, I was feeling very content, sitting in my airport chair at the departure gate, waiting for my plane to arrive. Until – I felt “that feeling”.

It hit suddenly after eating what should have been a benign salad. I immediately felt the panic and terror, because I knew somehow that it wouldn’t “just go away” this time. It was already too intense. I visited the restroom several times prior to boarding. When I’m nauseous, and before the vomiting is uncontrollable, sometimes all I have to do is bend over at the waist, and the vomit comes without effort. Occasionally, once I’ve emptied the contents of my stomach, the nausea will simply subside. I desperately gave this a shot, knowing it was my last chance to stop the episode, but to no avail. With each trip, I felt the intensity increasing. I was about to board a 6 hour red eye flight at 10pm, and I was actively vomiting. My options were limited. I was on my employer’s dime and official work travel. I could either board the plane, or request hospital care to get out of it. I didn’t need hospital care at that point in time, so there was nothing to do except to board that plane. I’m scared, but my brain has also slowed and I’m not thinking clearly. I suddenly felt that someone I love should know I’m sick, in case of something going wrong. I text my husband in a moment of weakness to tell him that I’m nauseous and scared. But, the flight crew directs the passengers to turn off our cell phones before he has gotten a chance to respond. The flight is full. I have the window seat, and a young couple near my age are in the 2 seats beside me. Before the flight has taken off, I’ve already begun actively vomiting. It’s happening about every 5 minutes. The nausea is relentless and there is no relief from it, even for a second. I feel my body heating up. I begin to drip with sweat and hyperventilate…

It’s not the best thing for me to be alone when in episode. I go into what is called a “conscious coma”. My episodes are very “seizure-like, in the sense that I’m a prisoner within my body while it goes haywire. I no longer have fine motor control, and my mental status is a stupor at best. I can’t seem to stand up straight, and must stay bent over at the abdomen in attempt to quell the nausea. I begin to sweat profusely, hyperventilate, and sometimes panic – depending on the intensity of the nausea. I’ll normally sit or lie down if possible, curl into a ball, hang my head low, and attempt deep breathing. The desire to do this, and the inability to do anything else will commonly cause me to sit or lie just about anywhere, without care for the surface. I’ve been known to lie on a public restroom floor in a desperate attempt to escape the nausea. I know that’s repulsive, and would never, ever do such a thing under normal circumstances. This is a testament to the intensity of the nausea, and how it’s so strong that it changes my mental processes enough that I simply cannot care about the things I normally care about.

The poor, poor people beside me. I’ve left my seat for the restroom as often as the captain will allow the seat belts to be unbuckled. But that isn’t as often as was necessary. Not only have these nice folks had to witness at close range my retching into garbage bags, but now I’m sure they can smell that I have also soiled myself. It’s something that typically happens in the early stages of the episode. It’s coming out both ends for awhile, until I’m completely void of contents within my GI tract. I’m absolutely unable to control it or hold it in. Normally I’d sit on the toilet with a bucket, or put on an adult diaper. I can do neither in this situation, and I pray for the “dry heave stage” – which is another type of torture altogether, but at least no one can smell it. This might be the worst and most embarrassing moment of my life, yet I’m too sick to be truly embarrassed. I have crawled over both of them clumsily numerous times now. I consider asking one of them to switch seats, giving me the aisle, but the truth is that I can’t bear to sacrifice the window seat, for the ability to lean on the wall. I can’t hold myself upright. I absolutely must be able to lean over since I can’t lie down. Plus, the cool feeling of the plane wall against my face and neck is soothing. They are gracious people and neither question me, nor act annoyed at being woken so often to let me pass. Actually, they don’t even act as if anything is out of the ordinary. I’m thankful for their attitudes. It comforted me that they seemed to be unaffected. I’m sure they were very affected, in fact.  I clamber over them yet again, in order to visit the restroom and dispose of my favorite pair of panties in the trash bin. I stuff as much toilet paper as I can into my pants to catch any future surprises. Improvisation on a reduced mental capacity can be interesting….

airsick

I can accurately describe both of my “plane episodes” as 2 of the worst experiences I’ve lived through. Don’t get me wrong, I’ve had worse and more intense episodes than these. What makes these worse than others is the lack of control I have in the situation, and the complete inability to get comfortable, treat myself properly, or find any relief. Over the years I’ve learned several “tricks” that help me cope when in episode. I’m unable to do most of these things in an airport/airplane situation. Some of those things include, but aren’t limited to:

  1. getting naked and wrapping myself in a terry cloth robe to wick the sweat, and prevent chills and shivering
  2. placing a fan so that it blows on my face only
  3. hanging from the waist down off of the side of the bed, upside-down with head hanging down nearly to the floor inside a bucket. I brace myself from falling off the bed by placing my hands lightly on the floor (I’m not sure why this helps, but it does. Perhaps it’s blood pressure related. My husband says this seems to be my “favorite” way to throw up.)
  4. having the ability to lie flat, curl up, spread out, or flip-flop around at will to aid with comfort
  5. if it is possible for me to lie perfectly still and deep breathe I have the best chance for sleep, which will stop the episode

Becoming perfectly still and relaxing, in order to fall asleep, is the #1 most important thing I can do to help reduce and/or eliminate the symptoms of a CVS episode. Those are also the things that are next to impossible to accomplish. My nervous system is over-firing, and is stuck in the ON position at maximum speed. Aside from a terrifying dosage of intravenous chemical sedation with Chlorpromazine (aka Thorazine) in a hospital setting (which seldom works anyway), I’m at the mercy of the things I have available to use in the moment. A public setting is never conducive to stopping an episode, and an airport setting makes it virtually impossible. Keep this in mind when reading about the actual episodes. In many instances I have no chance to stop an episode, and am sentenced to serve the time suffering, until it stops on its own.

I’ve been in the bathroom on the airplane for nearly an hour by my best estimate (which isn’t a good one, because I’m time warping in my mind). I need to be still and relax. The only time I can accomplish this is on the toilet in the bathroom. I sit there, lean over, hang my head low between my legs towards the floor, and manage to lightly doze off for several minutes at a time. I wake frequently, wondering if anyone is waiting outside for the restroom, but I don’t leave. No one has knocked. I’m in a “conscious coma” at this point, and will seek comfort at all costs. Since it is around 2am, I assume that most passengers are asleep, and not many need to use the restroom at this hour. The plane is large, and there is another restroom directly across from me. Plus two more at the front. I figure that people can use the others, and I decide just to stay in the restroom until someone forces me to leave. Looking back, it feels disgusting and appalling that I felt so comfortable relaxing and sleeping in the tiny airplane restroom. It just goes to show exactly how much misery I’m in while in episode.

The plane episode last summer was more intense than the plane episode I just went through a couple of weeks ago. The most recent episode felt less intense than the one from last summer, but the reason might have been that having been through it once before caused me to feel “more practiced” in the scenario, and thus less anxiety was present. The first time it happened, I felt helpless and doomed to my fate. I felt exactly the same way the 2nd time – but I also knew what to expect. If you know anything about anxiety you understand that “unknowns” will always cause an increase in anxiety, while knowing what to expect can vastly reduce anxiety in any setting.

I’ve been actively vomiting every 15-30 minutes for over 6 hours now. I’m weak and dehydrated. I’ve been sipping water and ginger-ale frequently to prevent dry heaving, which usually leads to my vomiting blood due to the constant stress and irritation to my stomach. (Most of the time there’s not much blood, but if there’s an increase I’ll be concerned that I’ve torn my esophagus or stomach.) I’ve also supplemented my water with electrolytes to prevent a dangerous drop in my potassium, which is common for me in an episode. I barely have the mental capacity to reason these things out and remember to do them. I know if it doesn’t stop soon I’ll need hospital intervention for an electrolyte imbalance. I need to change planes in Atlanta airport, and don’t have much time on my layover. ATL is huge, and I’m not likely to make the flight if I attempt the walk alone. The stewardesses are aware of my predicament at this point, and have offered their help getting me to the next plane. I’m rolled in a wheelchair across the airport to my next gate. At the gate, I’m unable to sit upright in the chair, due to the nausea and abdominal pain, so I lie in the floor next to the wheelchair, which is located next to the gate desk. The attendant notices me lie down and asks which flight I’ll be on. I thought she would tell me I can’t lie in the floor, but instead she promises to wake me if I’m asleep when my plane arrives. I’m grateful, because it removes another element of anxiety for me. I relax as best I can and close my eyes.

I’m on the last leg of the flight. It’s a short flight – less than an hour, and my husband will be at the airport waiting to drive me home. I can see the light at then end of the tunnel. Even though I’m still sick and feel horrible, at least I’ll be with someone who knows how to take care of me, and I’ll be able to do the “tricks” that might help this episode to pass. Fate has smiled on me for the moment, and my assigned seat is near the rear of the plane next to the restroom. Another stroke of luck has prevented anyone from being seated next to me. The flight attendant is seated behind me, and I ask him if I can lie across both seats. He follows the rules and tells me I can only do so until take-off, at which point I’ll have to sit up – but when take-off occurs he sits behind me while I continue to lie down, and says nothing to me. I’m grateful yet again for another person’s ability to be reasonable. Turns out that although I’m near the restroom, I’m not allowed to use it for any of the flight, on account of the flight being so short that we won’t reach a cruising altitude, and as a result won’t be allowed to unbuckle our seat belts. I’ve loosened my own belt enough that I can lie down, and I’m grateful for that much. I’m still actively vomiting, but the frequency has slowed to every 30 minutes or so.

The flight attendant sitting behind me begins to ask me a series of questions to determine if I am contagious and posing a threat to the other passengers. I’m typically unable to communicate effectively during an episode, because any attempt to speak causes the intensity of the nausea to spike suddenly, and I’ll usually vomit on the spot. I do my best to gather my thoughts and explain to him that I have a chronic illness that isn’t contagious. I manage to tell him the name of the disorder. I have documentation that he can read about in my backpack – which is right next to me, but in my current mental state of “conscious coma” I’m unable to remember that I carry this important document around for moments just like this one, and I fail to give it to him. Looking back, I’m at an utter loss for an explanation to how I could fail to remember this, but it’s always like this. My brain just won’t work while I’m in episode. The flight attendant grills me enough throughout the flight that I’m positive that the airline has discussed coming to my house to quarantine me if I infect the entire plane with some deadly disease. I wish I could reassure him, but he won’t take my word for it, and I guess I don’t blame him. I know I’m not contagious, so it doesn’t matter.

When I finally land at my final destination I’m taken in a wheelchair from the plane to the baggage claim area where I gather my bags, and am then wheeled outside to my husband who is waiting in the car. He has put the back seats down flat, and added a big puffy comforter and pillows for me to lay on for the hour long drive. The second I get into the car and lie down I can feel the anxiety begin to unravel. I can finally relax in a private environment. I can finally take on or off clothes at will, and I can finally flip or flop around at will. I only vomit twice during the ride. When I get home I fill the bathtub with the hottest water I can stand, and I soak for 2 hours. By the time I’ve gotten out the nausea has subsided nearly completely. I’m unable to eat for the next 24 hours, and it takes nearly a week for me to feel that I have a normal energy level again.

The more recent plane episode had a slightly different outcome, since I got sick on the flight that took me to the place where I still needed to accomplish something in a timely fashion, rather than on the way home after it was all said and done…

So… the salad from the very beginning of this post… I ate it. I felt “that feeling”. And – it didn’t just go away….. I’m devastated to know I’m about to go through this process yet again less than 6 months since the last time this happened. Solo air travel is becoming a source of anxiety and I’ll likely be afraid to fly alone after this. I don’t want to go through this again. No one will be waiting to help me this time when I arrive at my final destination. I feel that familiar panic, and feel very alone in my predicament, yet again.

It happens pretty much just like it did with the first plane episode. This time there is an empty middle seat, and I ask the person in the aisle seat if he minds if I lie across the middle seat. He is aware of my vomiting, since he can see my head in a bag every 5 minutes or so, and he nods to me without question. I thank him and my lucky stars. This time the diarrhea is minimal, and I’m able to control it more. I only have to disturb him to pass by for the restroom a few times during the 4 hour flight.

The plane makes another stop, but I won’t have to deplane. I’ll sit there while the other passengers de-plane, new passengers board, and then we’ll fly on to my destination. I’m grateful yet again for small miracles. I get to sit down rather than be forced to move or walk. There’s not much that could make me happier right now (except for the nausea and vomiting to subside, of course). Several new passengers ask if the seats beside me are taken. I respond with “no” and promptly begin to vomit into the garbage bag from the effort of speaking. Every single person reacts with a faltering smile, tentatively sits in the aisle seat while looking very concerned, and then gets up after about 3 seconds and finds another seat. The flight is not full. Another miracle. No one who sits beside me stays. I now get 3 seats to lie across for the last 3 hours of flight. The universe seems to be helping me and I’m yet again grateful. Vomiting is occurring every 15 -30 minutes now.

I arrive in Portland at 9pm. I’ve never been to this city, I’m actively vomiting, and I now have to take a shuttle to the rental car place before driving alone for 45 minutes to my hotel. It’s not safe for me to drive. I know that. I don’t condone this for others. But I don’t know what else to do. My current mental state is to seek comfort at all costs. It’s an intense drive that I’m unable to ignore in my misery. The episode won’t stop until I can relax and sleep. I have to get to a place where I can take care of myself, and there’s no one with me. I don’t have another choice. I can’t afford to pay for a 2nd hotel right here, and I have just flown across the country to meet with a real estate agent and house hunt in 12 hours. My time and options are very limited. Luckily, the “conscious coma” isn’t as intense as it normally is. I manage to stand straight and communicate effectively for long enough to pay for my rental car at the counter. I excuse myself for the restroom at least 3 times in the middle of the transaction. The whole time I’m thinking, “You’ll be in the car soon. Then you can be alone and able to vomit in peace.” Just getting to the car seems to be a monumental task, that when completed feels very significant.”

I drive in the rain, at night, in an unfamiliar city, with a garbage bag stretched from my fingers on the steering wheel to the fingers under my chin. I force myself to hold my eyes open while I vomit on the interstate. I take my foot off the gas each time, maintain the steering wheel, and stay in my (far right, when possible) lane. I’m actually glad that it’s night for one reason – the passing cars can’t see what’s happening behind my wheel. It’s the longest 45 minute drive of my life. My head is filled with the mantra – ” Just 40 more minutes to a bed… Just 39 more minutes to a bed…. Just 38 more minutes to a bed….” for the entire journey.

I have finally arrived at my hotel. The check-in procedure feels like torture that occurs within inches of the finish line. “Just 5 more minutes to the bed…” When I finally close the hotel door behind me it’s as if a huge weight of anxiety has been left in the hallway. No one can see me. Finally! I drop my bags where I’m standing in front of the door. I begin to pull my clothes off layer by layer. I don’t have the strength to stand in the shower, so I lie in the bathtub with hot water for about an hour. I get out and get into the bed and wish for sleep to come. It doesn’t. I attempt deep breathing. I try to quiet my mind. It’s impossible. I cannot remain still. The nausea is not relenting and is causing me to flop and writhe around in the bed, the way I wanted to do on the airplane but couldn’t.

It’s midnight, and I’m supposed to meet the Realtor to look at houses in 9 hours. I just want 3 hours of sleep, but more would be spectacular. I don’t get any. I flop and twist around in the bed like a tornado of nausea. The sheets are all over the room. It looks like all of my bags have exploded. I had to throw everything out haphazardly to find what I needed immediately. There is no relief from the nausea. I don’t know what to do about the fact that I likely won’t be able to function in the morning to perform the task I flew here to complete. Thinking about this isn’t helping me to relax or sleep any…

I finally doze for an hour. When I wake, it’s a glorious moment. The nausea has passed. I’m so thirsty I could drink a lake, and I feel hunger, but know it could be a trick…. I drink some water and eat a piece of apple. The nausea returns immediately and I’m vomiting all over again….

Repeat the above paragraph 3 times before 8 am. I’m beginning to think I’ll never be able to eat or drink again without triggering the nausea. I call the Realtor at 8 am to ask to reschedule our meeting for the afternoon. He agrees. I attempt sleep once more. This time I sleep for 3 hours. That’s my magic number: 3 hours of sleep = episode stopped.

The Realtor has brought me chicken noodle soup and Gatorade to the hotel. He is my angel. It helps. I’m utterly exhausted, but at least I’m not nauseous or vomiting. I can do this. It will be hard, but I can. I have to.

And I did. Like the Cyclic Vomiting Warrior that I am – I did it. It’s hard to believe that I could get in a car with someone and look at houses for several hours – only a few hours after a 24 hour long CVS episode.

But I did it. Because I’m a Warrior. Because I won’t let this stop me from living my life. Because I’ll never quit fighting.

Please be aware of my fight.

*Cyclic Vomiting Syndrome Awareness Day*

March 5th, 2016