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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.

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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….

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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

 

 

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Nutritional Supplements for Cyclic Vomiting Syndrome Warriors

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Welcome to the 3rd post in my series of posts about the Holistic and Natural Lifestyle for Cyclic Vomiting Syndrome!

In case you’ve been waiting for it – this is “The Supplement Post”! I’ll go into detail on which supplements I started with, how that protocol has changed, and finally, my current supplementation schedule. (If you need to go back and catch up, click “The Power of The Holistic Approach” and “Let food be thy medicine, and medicine be thy Food” to read the 1st and 2nd post in this series.)

Before I get discuss my current protocol, I should mention what supplements I have taken previously as recommended for CVS sufferers. You can click “My Supplement Regimen“, to read a previous blog post for more detail on my previous supplement protocol before embarking on the “Natural Lifestyle”, but here are the major supplements I have focused on taking for the past couple of years to help with the mitochondrial dysfunction aspect of CVS: (The heading links will take you to the Wiki or Home Web page for each supplement. Click on the pictures for the links to purchase the products.)100mg-activeq-180-softgels-uses-ubiquinol-the-active-antioxidant-form-of-coenzyme-q10-7

  1. CoQ10 – This product is responsible for my first major increase of energy, and change from a life of chronic fatigue, to a life of energy and motivation! carnispan-timed-release-l-carnitine-fumarate-880mg-60-tablets-5
  2. L-Carnitine – Helps our mitochondria function properly, and should be taken in conjunction with C0Q10.
  3. B-Vitamins and Magnesium – In a product called “Preventa-Migraine”. I highly recommend this product, especially if you have migraines associated with your CVS episodes. I actually do NOT have migraines with my 7164avr6sdL._SY679_episodes, but I found that after 2 months of taking this product regularly, my episodes had begun to 611p157I78L._SX522_decrease in intensity and frequency. I feel this product played a role in that improvement. I’ve included the supplement ingredients label for your convenience. The other ingredients are natural substances that have been shown to help individuals with migraines. Click the pictures for a link to purchase the product.

But – here is what I’ve been doing lately, and I feel that the changes and additions are making a major positive difference:

I began the new initial supplement protocol at the same time I began my “30 Day Detox Diet”, which was discussed in my last post. This protocol was prescribed for me by my Naturalist Doctor. I have not altered it in any way from what she recommended for me. I’ll begin by listing the supplements and familiarizing you with how they help. The heading links will either take you to the product website, or to a site with further information on the product. You can click on the pictures to be taken to a link to purchase the product.

  1. Cell Food – Oxygenation, mineralization, detoxification, metabolic efficiency and respiration; helps increase energy levels, enhances brain 61neW9wqPwL._SY679_61yU6xUIWAL._SX522_functioning, alertness, and concentration; supports free radical removal, provides electrolyte activity, supports allergy relief, helps balance metabolism, helps improve metabolic efficiency with metabolic enzymes, aids in digestion, protective against microorganism overgrowth, includes amino acids. (8 drops, 3 times per day, for 3 months)
  2. Vitamin D3 (2000 IU) – Supports endocrine system health, supports proper blood sugar regulation, thumbnail.asp thumbnail.asp2supports proper function and health of the cardiovascular, immune, musculoskeletal, and nervous systems; has anti-cancer properties, helps overcome cravings and fatigue. (1 capsule daily, with food, ongoing)
  3. Pro DHA – DHA is the fatty acid that supports a healthy brain, eyes, nervous system, and mood. In 81bJleS6z5L._SY679_ 81gcNIDlaDL._SY679_fact, at least 20% of the brain is composed of this vital fatty acid. Research shows that DHA supports memory, cognition, and emotional well-being, in addition to promoting healthy eyes. (2 capsules daily, with food, ongoing)
  4. Ultimate FloraMax – A probiotic. Enhances immune system response; supports digestive, 71ZP7CEqPPL._SX522_ 71ZqxsevGaL._SY679_immune, and respiratory systems; helps increase the ability to simulate the nutrients from food and supports improved gastrointestinal support. (1 capsule daily, until finished)
  5. Pancreatin & Ox-Bile Extract – Digestive Aid. Improves the body’s 7917ability to utilize nutrients through enhanced digestion. Digestive enzymes help the body break down and absorb nutrients, and reduce the chances of toxins being released by putrefaction and fermentation of undigested foods. It also helps enhance immune function, improves circulation, and helps counter inflammatory and degenerative conditions. (1 capsule, with each meal, ongoing)
  6. Intesti-Max – Helps strengthen and support the protective intestinal lining, promotes healthy digestion and nutrient absorption, promotes 11a8-RONU6Lintestinal cell health, provides powerful antioxidant support, helps to maintain and restore proper intestinal permeability, specially designed to help assist repair in the mucus lining that coats the digestive system; may be used for stomach or duodenal ulcers, bleeding intestinal lesions, and any irritation or ulceration of the GI tract. Contains L-Glutamine, n-acetyl d-glucosamine, gamma oryzanol, and soothing herbs. (1 scoop in the morning, 2 months)
  7. Bach Flower Remedy – Emotional balancing and healing; support relief from depression, anxiety, stress, trauma, and other emotional factors that impede healing; helps when feeling generally tired and unwell. My naturalist makes the mixture for me, and gives it directly to me. (4 drops, 4 times per day, ongoing, as needed)
  8. Grapefruit Seed Extract – Broad spectrum natural anti-parasitic, antiviral, anti-fungal, and antibacterial properties. Powerful concentrate cardiovascular-research_gse-grapefruit-seed-extract-CR2oz_main_60x60 cardiovascular-research_gse-grapefruit-seed-extract-CR2oz_side1_60x60that aids the body’s natural defenses against flu and colds, sore throats, and even allergies. (15 drops, 3 times daily, until finished)

So, now that you know a little about what I’m taking, here’s a clearer picture of the daily dosing schedule I must maintain to ensure I take all these supplements properly:

Upon Arising:
  1. Morning Drink – 8 ounces
  2. Cell Food – 8 drops in morning drink
  3. Ultimate Flora Max -1 capsule
  4. Grapefruit Seed Extract – 15 drops in morning drink
  5. Intesti-Max – one scoop in morning drink
  6. Bach Flower Remedy – 4 drops under tongue
Breakfast:
  1. Pancreatin Ox-Bile – 1 or 2 tablets
  2. Bach Flower Remedy – 4 drops under tongue
Lunch:
  1. Pancreatin Ox-Bile – 1 or 2 tablets
  2. Pro DHA – 2 capsules
  3. Vitamin D3 – 1 capsule
  4. Cell Food – 8 drops in water or tea
  5. Grapefruit Seed Extract – 15 drops in water or tea
  6. Bach Flower Remedy – 4 drops under tongue
Dinner:
  1. Pancreatin Ox-Bile – 1 or 2 tablets
  2. Cell Food – 8 drops in water or tea
  3. Bach Flower Remedy – 4 drops under tongue
  4. Grapefruit Seed Extract – 10 drops in water or tea

Some of the supplements are easier to take than others. In particular, the ones that are drops meant to be diluted in another liquid before drinking have proven not to be the tastiest things I’ve consumed. The Grapefruit Seed Extract is very bitter, and not surprisingly tastes exactly like chewing on a grapefruit seed. The Bach Flower Remedy tastes a little like I would think a flower petal might taste. But I’ve actually grown to enjoy that one with time, and I’m happy about “tasting a flower” 4 times daily. The Cell Food tastes like I squeezed a little lemon in my water, so that’s not hard for me at all, and is actually very pleasant to drink. The Intesti-Max has no flavor whatsoever. But it doesn’t dissolve easily, so I end up drinking water with powdery globs floating in it. Not very appetizing to the eyes, but once I got used to the consistency; it was easy to put it down the hatch with the rest. I have gotten used to the other “flavors” with time. The pills are easy, of course.

The hard part is making this all a part of a normal routine, and ensuring I have all these things with me to take at every meal throughout the day. I sit down once a week to organize the pills into doses for the week. This takes me about 30-45 minutes total. In order to accomplish this I have purchased multiple pill dispensers, as well as millions of plastic pill packets to separate daily doses and put in my purse or lunch box for work. In case you aren’t aware, most supplements are the size of horse tablets for some reason. My husband likes to joke about my most recently purchased pill dispenser, since it is about the size of a large laptop computer. He calls it the “death bed model”. Not really in good taste, I realize, but it makes me laugh all the same. If I don’t take the time to separate the doses ahead of time, I learned that I’ll be rushed, and might fail to take things properly. It also would take nearly 5 minutes to dig out all the pills with each dose, so it saves a ton of time being able to grab the pre-separated dose, and go.

After the intitial 30 day period, the following supplements were added to the protocol:

  1. Mito-ATP – This is an antioxidant, which also supports mitochondrial function. (2 capsules, 2 times daily, ongoing). I specifically asked for this supplement to be added, based on the current supplementation recommendations for Cyclic Vomiting Syndrome. This product contains lrg_MATP1CoQ10, L-Carnitine, B-vitamins, and more – all in one pill! I have tried several products over the years, and always had to buy “the mito-coctail” in separate supplements. I no longer have to do that. This product has all of the supplements necessary for “the mito-coctail” in sufficient doses when taken multiple times daily. It is also the most natural and purely made product with these substances that I have found to date. If you have Cyclic Vomiting Syndrome, and you take away one thing from this blog post, I would recommend that everyone purchase this product and try it to see if it helps you. You will need to take it for more than 3 months, at the proper dosage (higher than the recommended label dose for CVSers) to see results. From my own personal experience, I can tell you that while the results take time, they are worth the patience and waiting for them. My energy levels have been nearly child-like since taking this regularly. It’s absolutely amazing to go from chronic fatigue, to having the energy to conquer the world, in a mere matter of months! Click on the text link above to go to a website and see a full list of ingredients! Click on the picture to buy it on LiverMax_1013Amazon!
  2. Liver Max 1 & 2 – Aids in natural detoxification processes in the liver. (2 capsules LM1 in AM, 2 capsules LM2 in PM, until finished)INN-43000-2 INN-43000-1
  3. Coenzyme B Complex – (1 capsule daily, until finished)Adrenal_Health_Bottle_60ct AdrenalHealth_60ctSupfax_007-1191-0811-1346426883
  4. Adrenal Support – (2 capsules, 2 times daily, 3+ shoppingmonths)
  5. GABA – Inhibits stress, anxiety, and depression. Calming. (1 capsule daily, 1-3 months)
  6. Women’s One Daily – A natural multivitamin. (1 cap daily, 1-3 months)lg59 PU0139_label
  7. L-Glutamine – Aids with gut health and memory. (1 capsule, 3 times daily, until finished)

Here is how the new daily protocol looks after all the adjustments:

Upon Arising:
  1. Morning Drink – 8 ounces
  2. Women’s One Daily – 1 capsule
  3. Ultimate Flora Max -1 capsule
  4. Liver Max 1 – 2 capsules
  5. Coenzyme B Complex – 1 tablet
  6. L-Glutamine – 1 capsule
  7. Adrenal Support – 2 capsules
  8. GABA – one capsule
  9. Bach Flower Remedy – 4 drops under tongue
Breakfast:
  1. Pancreatin Ox-Bile – 1 or 2 tablets
  2. Mito-ATP – 2 capsules
  3. Bach Flower Remedy – 4 drops under tongue
Lunch:
  1. Pancreatin Ox-Bile – 1 or 2 tablets
  2. Pro DHA – 2 capsules
  3. Vitamin D3 – 1 capsule
  4. L-Glutamine – 1 capsule
  5. Mito-ATP – 2 capsules
  6. Adrenal Support – 2 capsules
  7. Bach Flower Remedy – 4 drops under tongue
Dinner:
  1. Pancreatin Ox-Bile – 1 or 2 tablets
  2. Liver Max 2 – 2 capsules
  3. Bach Flower Remedy – 4 drops under tongue
  4. L-Glutamine – 1 capsule

It was also recommended that I take 10 drops of Cell Food in water when I have a CVS episode, for nutritional support and electrolyte balancing.

I feel that I should mention that these supplements are not cheap, and insurance will not pay for them. However, paying for preventative medicine means you pay much less for treatment oriented medicine, and this is a concept that has held true for my experience. I have had nearly non-existent medical bills since I have consistently made and maintained this change in my lifestyle. When I put the pen to the paper, I’m saving more by spending money on my good health and preventing more costly hospital episodes and doctor visits.

In summary, I am taking many supplements which are meant to deal with various bodily processes, and optimize those processes. I believe these supplements are necessary in order to help detoxify, and to provide the body with optimal substances with which to function at optimal performance. I feel a vastly positive difference in the quality of my daily life. My CVS symptoms, and my health in general, began improving when I began taking supplements a couple of years ago, and has continued to improve in a significant way with each change I have made that I listed above. However, these supplements and protocol were specifically tailored for me and my body by my ND, and might not be exactly right for others. I highly encourage doing your own research, or seeking out a specialist to direct you to the specific supplements that will benefit your current, individual health the most.

Fellow Warriors, I hope this post finds you well, and gives you new information with which to work within your own life for optimal health!

Antioxidants Concept or Anti Oxidants or Antioxidant

Let Food Be Thy Medicine, And Medicine Be Thy Food

Let food be thy medicine, and medicine be thy food. ~Hippocrates

Hippocrates had it right, so long ago, and it seems that we have all but forgotten this wisdom. It is my opinion that there might never have been truer words spoken than those in the quote above.

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In my last post I discussed how using the holistic approach to healing and dealing with my chronic illness (Cyclic Vomiting Syndrome). I promised to go into detail about my Detox Diet prescribed to me by my Naturalist Doctor, and I’ll make good on that promise with this post.

Let’s jump right into it. The following is an outline of my “Master Wellness Protocol”, designed by my Naturalist Doctor to fit my individual needs:

NUTRITIVE SUPPORT: Supports the body to heal, repair, restore, revitalize, and balance.

  • Daily Food Group Ratio: 60% vegetables, 15% fruits, 10% beans, 10% gluten-free grains, 5% nuts and seeds (30 days). (This is absolutely the most important part of the entire protocol. Let food by thy medicine, and medicine be thy food.)
  • Morning Drink: 8 fluid oz every morning upon arising. Lemon/Cayenne/Ginger/Honey mix upon arising. Helps complete elimination cycle, improves circulation, improves immune function, helps lower cholesterol, improves cardiovascular health, and supports weight loss. (This is a lovely drink. Not only do I enjoy it, I look forward to having it in the mornings with my supplements.)
  • Daily Water Quota: 60 oz purified water daily (MINUS water taken with supplements, teas, morning drink, etc. (This is my personal quota based on my weight. You can meet your own quota by drinking 1/2 oz of water per pound of body weight. It’s a lot of drinking, and a lot of peeing, as a result. But I really do feel much better when properly hydrated.)

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FOODS TO EMPHASIZE:

  • Antidepressant Foods: Organic raspberries, blueberries, blackberries, asparagus, avocados, cashews, walnuts, garlic, green tea, oatmeal, flax seed, wild salmon, parsley, organic carrot juice.
  • Vitamin E Foods: (Antioxidants, cardiovascular health, circulation, oxygenation.) Excellent sources of Vitamin E include: spinach, turnip greens, and chard. Very good sources of Vitamin E include: mustard greens, cayenne pepper, sunflower seeds, almonds, bell peppers, asparagus. Good sources of Vitamin E include: organic turnip greens, organic kale, tomatoes, cranberries, broccoli, Brussels sprouts, papaya, organic raspberries, organic carrots.
  • Manganese-Rich Foods: (Plays a major role in the functioning of brain and nerves, supports endocrine system and gland function, and necessary for metabolism of proteins and fats.) Raspberries, pineapple, grapes, beetroot, garlic, green beans, peppermint, oats, nuts, watercress, organic mustard greens, organic strawberries, organic blackberries, tropical fruits, lettuce, organic spinach, blackstrap molasses, cloves, turmeric, leeks, bananas, organic cucumbers, kiwis, figs, organic carrots, green vegetables, brown rice, coconut, almonds, hazelnuts.
  • Brain Foods: Almonds, avocados, bananas, garlic, chickpeas, dulce, blackstrap molasses, carrots, leeks, beets, brown rice, quinoa, millet, dark leafy greens (kale, collard greens, mustard greens, turnip greens, chard, spinach), organic strawberries, blueberries, sage, Swiss chard, sunflower seeds, sesame seeds, black beans, cashews, seaweed, green beans, navy beans, tempeh, flax-seed, onions, peppermint tea, pumpkin seeds.
  • Flax Seed: 2+ tablespoons, fresh ground, daily. Strengthens and balances immune system, normalizes inflammatory response, strengthens cardiovascular health, helps with digestion/constipation, improves mental focus and clarity, helps fight depression, stress, and PMS, high in protein, rich source of Omega-3 fatty acids, improves brain health, anti-microbial and anti-cancer properties.
  • Antimicrobial Foods: 2 raw garlic gloves, onions regularly.

let food be thy medicine 6

FOODS TO ELIMINATE FOR A NATURAL DETOX/CLEANSE:

  • No Whites: no white sugar, white flour, white bread, white table salt. Bread substitutions include: Ezekiel bread, gluten-free bread, whole wheat bread made from unbleached flours, sourdough bread. Sugar substitutions include: stevia, pure maple syrup, raw honey, blackstrap molasses, rice syrup. Salt substitutions include: unrefined sea salt, like Celtic, Atlantic, or Himalayan. Rice substitutes include, black rice, jasmine rice, basmati rice, millet, quinoa.
  • No Dairy: Milk, cheese, ice cream. Substitutions include: Almond milk, coconut milk, rice milk, occasional goat milk/cheese, feta cheese.
  • No Refined Oils, Trans Fats, Hydrogenated or Partially Hydrogenated Oils: Substitutions include: olive oil, coconut oil, sesame oil, avocado oil, palm oil. Use coconut or palm oil for high temperature cooking.
  • No Flesh Foods For 30 Days: No red or white meat, seafood, or fish. Substitutions include: mushrooms, tempeh, beans, chia seeds, hemp seeds, flax seeds, other nuts and seeds.
  • No Fried Foods: No processed foods, GMO foods, junk foods, fast foods, or foods with artificial flavoring, coloring, or preservatives. (This eliminates nearly everything the majority of the population is eating about 90% of the time.)
  • No soda, coffee, or caffeine: Substitutes: MOSTLY WATER! Others include: herbal teas, Tazo chai, Teeccino, Erzotz, Postum, Catfix, Pitaya, Mama Chia, Celestial Kombucha, Kevita, The Republic of Tea, Isse Esque, Taste Nirvana.
  • No Peanuts, Corn, or Soy: Other nuts and seeds are fine.
  • Avoid Or Severely Limit Alcoholic Beverages

keep calm and let food be thy medicine

So, you might look at the title of this post, and think, “30 days!? I could never go that long without eating ________ (fill in the blank)!” Or, perhaps you might think, “30 days!? That’s nothing. I go much longer without eating __________ (fill in the blank)!” The truth is that the longer I continued with the detox diet, and continued learning about the ways of natural medicine, I realized that this is a change that, if I am serious about improving my health continually, I will make and continue this diet for the rest of my life. I think it would be much more appropriate to call it 30 days of “withdrawals”, as opposed to “detox”. I say that because the detox only lasts if one continues to refrain from re-poisoning themselves with the non-healthy food choices which are so readily available to our society. Otherwise, one would repeat withdrawals each time this diet is attempted.

“How were my withdrawals”, you ask? Well, for me, you can fill in the first blank in the paragraph above with “cheese”. This was the very hardest part of this journey for me. I’m a freaking cheese addict. I didn’t realize until I began to proceed with this diet how addicted I am to cheese. I have put it on nearly every thing I’ve eaten since I’ve been alive. I love it, and it loves me. We cannot live without each other. Cheese really does make everything better to me. Also, at night before bed, I found myself craving sugar and carbohydrates. This one was likely a stress response craving, according to my naturalist, because I can take the sweets or leave them. They aren’t that appealing to me. The good news is that once I powered through the hard part with the cheese withdrawals, (I only cheated like one tiny time – I swear!), the cravings eased up on me, and then eventually all but went away. And I found that, just like any other powerful drug, when I cheated, it made it harder not to cheat again. I did much better when I stayed away from it altogether. And the longer I went without eating it all, the easier it got to stay away. If I start to cheat too much, my cravings will return with a vengeance.

feed or fight disease

LIFESTYLE AND ENVIRONMENTAL CHANGES:

  • Chewing: It is CRITICAL to chew each bite of food until it is liquid before swallowing. This aids your body in proper digestion.
  • Water With Meals: Limit to a maximum of 4 ounces of water or tea with meals. This prevents dilution of the stomach acid and aids in proper digestion.
  • Exercise: At least 5 days per week, 30-60 minutes each day, alternating days between cardiovascular and strength/resistance exercises. Be sure to include a few minutes of stretching.
  • Sunshine: Get at least 15 minutes a day of fresh sunshine (no sunscreen) whenever possible. Creates a reserve of energy in muscles and nerves, improves metabolic functions, brain function, and nerve function, etc… Also, sunshine creates Vitamin D within our bodies, which many of us are deficient in, due to wearing sunscreen and working indoors most of the day.
  • Cookware: Use only glass, enamel coated cast iron or stainless steel cookware. Store in glass as much as possible. Do not use aluminum foil or aluminum cookware.
  • Drinking Water: Avoid drinking water from plastic bottles, or only drink from BPA-free plastic if necessary. Use stainless steel water canteens filled with filtered water to transport your water. Learn to drink water room temperature. Avoid tap water when filtered is available.
  • Avoid Using The Microwave: Instead, plan and prepare your meals enough in advance so that you can use an oven or convection oven to cook and/or re-heat food.

eat to live don't live to eat

I challenge you to think about what would be necessary to make these changes in your life. This path isn’t easy at all. In fact, it is extraordinarily difficult for this gal. I struggle daily just to have enough time in my day to do the things that are required for this lifestyle. I work a full time job plus a lot of overtime and driving time, which leaves me little free time to plan or prepare my food. It has also put a huge dent in our wallets to buy fresh, organic, gluten-free food on a regular basis. It is my opinion that a huge and constant supply of internal motivation is of the utmost importance to actually live this lifestyle. Think about the food you buy in the grocery store on a regular basis. How much of it is already prepared, or processed so that you only need to reheat it somehow. How much of it did you purchase because it was cheap, easy, or quick? When one eliminates processed food from their diet, it becomes a basic requirement to cook everything you eat pretty much from scratch. I usually have to set a side one or two whole days per week to accomplish the cooking and preparation necessary to consume this type of food. That means I give away my weekends to this lifestyle on a regular basis. Here’s a rough look at my preparation list:

  1. Make a large jug of morning drink that will last me approximately one week. (30 minutes)
  2. Make salad. Chop vegetables. Fill large container with organic greens mix, onions, broccoli, cauliflower, carrots. Fill a separate container with diced tomatoes. (Approximately 1 hour) Refrigerate. When I’m ready to eat the salad, I only have to toss some of the pre-made mix in the bowl. But then, I add the things that would have made the salad get soggy if stored for any amount of time together, like the tomatoes. Also, I add sliced almonds, and cut and add half a ripe avocado (leave the seed in the other half for better storage until the next day). (Approximately 5 minutes). Now I’ll need to make my salad dressing, since I can’t find any to purchase without unwanted ingredients. I’ll cut a lemon in half, saving the other half for tomorrow, and squeeze half of it on my salad. Then I’ll drizzle olive oil, grind some sea salt and black pepper over it all, and finally I’ll use my garlic mincing tool to mince 2-4 cloves of fresh garlic. (Approximately 10 minutes). This makes the total time for the salad prep time break down as follows: 1 hour for pre-preparation every 5 days or so, then another 15 minutes prep immediately prior to eating. Not terrible at a glance, but much more than I was used to spending on preparation of my food.
  3. Boil rice. I make a large batch of rice weekly and add it to salads or use it as a side dish. It is also good to calm the night-time carb cravings. (Usually takes approximately 1 ½ hours).
  4. Soak and boil beans. This is a two part process. I start with dry beans and boil them for 2 minutes, then remove from heat and let them soak for 6-8 hours. Then I bring them to a boil again, reduce heat and simmer for approximately 1-2 more hours. This is a long stretch of time, but you only have to be around periodically when the timers go off, and to occasionally check the boil/simmer to ensure it’s still simmering or not boiling over. I usually do the long soak overnight to save time.
  5. Make hummus dip for veggies. After the chickpeas are boiled I must mix ingredients and put it in the blender. I actually burned my blender’s motor up with the last batch. Time to invest in a food processor! (30-45 minutes)
  6. My husband sautees vegetables in coconut oil and seasonings for side and main dishes for dinners. He does this for me a few times a week when I’m running short on time, but want something semi-quick and hot. (20 minutes prep and cook time).
  7. Fresh fruits and veggies only last a few days to a week, depending what they are. So I need to make a trip to the grocery store or farmer’s market several times weekly. Add in 1-2 hours for each trip I make that week.
  8. Potatoes. I eat a lot of sweet potatoes, and cook them in the convection oven. (Approximately 1 hour cook time)
  9. Consider the time it takes to cook and reheat food in the oven or convection oven, vs. popping things in the microwave constantly, the way most of us are used to doing on a daily basis. Think about how many times a day you might not have time to prepare food, so, in order to survive, you throw something in the microwave before you must dash out the door to work. This is something I must learn not to do. I must learn to think as if there is no longer any such thing as a microwave in my house. Yes, I cheat on this occasionally. Sometimes I must eat immediately, or I feel faint and lose energy, which could trigger an episode. But as much as possible I’m avoiding doing this. I must now anticipate that I will be hungry, about an hour before I’m actually hungry, so that I’ll have time to heat it in the convection oven.

medicine or poison

Some might read this and think, “I cook more than that every day!” I agree that what I’ve listed above isn’t an enormous amount of time. However, when you take into consideration that I am working an average of 55 hours per week, and that 50-80% of the time I am sent out of town to travel for work, leaving me no time nor a kitchen to cook with. Many times I’m trapped in a hotel room for a week at a time. My husband helps when he can, but he is attempting to start his own business, which leaves him little time for cooking. Sometimes things become impossible, and I have to cheat with something quick. I try not to fret when that happens, because I keep it to an absolute minimum. No one can be perfect. So I don’t beat myself up about it, and that’s that.

This is just a glimpse into the life. At any given moment in the day, I’m usually doing or thinking about something that has to do with eating or preparing to eat my food. It takes me 30 minutes to an hour to prepare my lunch and dinner that I take to work with me. I usually do not have the luxury of using anything except a microwave to heat food at work. I’m getting better at it, and learning some tips and tricks to save me time preparing the food. Sometimes it feels like my entire life is about what I do or don’t eat, and needing to make it. I must prepare a food bag and take one pretty much wherever I go. This includes work, hanging out with friends, visiting family, going on vacation, family reunions, holiday gatherings, going to the movies, etc… I basically carry a bag of food around with me everywhere I go, which isn’t easy either. I’m can frequently been seen lugging a cooler around, and trying to keep things cold, and prevent food spoilage while transporting things. When my food gets a little warmer then ideal, this means it won’t keep as long if I don’t end up eating it right away. When food is expensive, that matters. I’m always thinking about when I’ll need to get more ice, or when I’ll need to re-freeze the ice packs, or if the ice has melted and soaked into any of the food containers. I usually wrap the food containers in plastic bags, but things still sometimes get wet and/or soggy if they sit long enough in the cooler with melted ice.

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So… it’s hard. I think you might see that now. Just remember that it’s a lot easier in black and white than it actually is to put it all into motion. However, I believe that anyone who puts their mind and heart into this endeavor can accomplish it. You only need enough motivation to keep you going through the tough times. Learning to fight and eventually beat this chronic disorder of Cyclic Vomiting Syndrome is my driving motivation. My episodes are torture. Even when they happen infrequently, and/or are mild in intensity, they are still complete and absolute torture. I’ll do anything…. absolutely ANYTHING, if it will allow me to live a life without the torture of Cyclic Vomiting episodes. This natural way of life is now MY way of life. I embrace it wholeheartedly and love it for what it is. It is my path, and I’m happy to have the opportunity to walk it, regardless of the difficulty.
My next post will focus on my supplementation schedule, and how that has changed over the course of the past few months. Please check back for it. Believe it or not, this diet is NOT the only major change I’ve made that is affecting my health. Proper supplementation is essential for the process of healing and restoring balance to the body while in transition from and unhealthy to a healthy physical and mental state.

Thanks for reading, and I hope that this information can truly help other people like me.

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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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Eating For Health and Recovery

When it comes to eating for health and recovery from any chronic illness there is a lot to be learned. There are many “diets” out there, and we must do our research before diving into major dietary changes, based on our individual circumstances.

Much of my “learning” has recently been accomplished via online webinars that teach about functional medicine and how to heal your body through natural means, like optimal nutrition. I have attended two of these webinars in the past year. The Evolution of Medicine Online Summit and The Healthy Gut Summit. These were week-long events with an average of 4 hours of presentations a day to listen to. It takes a commitment of time to get all the information, but has been very worth it for me. The opportunity to listen to these for free has passed, but they are still available for purchase. Also, if you follow the website, I’m sure there will be more of these soon, and you can register to listen for free!

Another great part of my learning comes from simply reading and researching anything I can to learn about optimal cellular nutrition. Since we now have strong evidence linking CVS to mitochondrial disorders it makes sense to eat in a way to treat a mitochondrial disorder.

What I’ve learned might shock you. It seems that with all our advances in technology, we have failed when it comes to food. Ever heard the saying, “If it ain’t broke, don’t fix it.”? (That’s the southern version.) Well, it’s like that. The food we had for thousands of years before technology wasn’t broken, and we shouldn’t have “fixed it” with all the processing and adding of preservatives and chemicals. It was all in the name of convenience for the consumer, and money for the companies, of course. Historical people had it right all along. Fresh, organic, locally grown food really is best.

I’ll be the first to admit that it’s nearly impossible to eat clean and fresh, depending on geographical location and individual circumstances. For me, I simply don’t have much time, (or desire for that matter) for cooking. But eating fresh requires cooking multiple times weekly. My husband is an angel and helps out with this a lot. I live in a place where organic, locally grown veggies and fruits are not necessarily easy to come by. I’ve recently been saved by a new Publix opening near me, but prior to that it was difficult to find anything clean or local. I’ve recently learned of some online resources, such as Thrive Market, for ordering health food right to your door. There are some other ways to be creative. Try asking around the local farmers about purchasing from them. Some will, some won’t. Farmers Markets and Community Sponsored Agriculture are options for some.

There’s also that thing where the most recent generations seem to have had our taste buds brain-washed to love processed food with preservatives and sugar instead of “real food”. I know, because I was one of them. Now, my parents did a great job of restricting our access to candy, soda, sweets, etc… And my Mom cooked us balanced meals. I wasn’t a picky eater, so I was never bothered much by food. I ate everything, and loved pretty much everything I ate. When I came of age to work and make my own money in high school, I decided to treat myself pretty much daily with Mountain Dew, Sun Drop, and various candy bars, which I thought myself to deserve for having not eaten them for most of my life. Then, in college I decided to be completely lazy, and eat out of boxes and cans for 6 years. And lets not forget all the booze. That definitely didn’t help. This carried over into the married years as well. I feel that I became like a food junkie for all the flavor and none of the nutrition.

The thing that is important to understand is that processed food is basically a “ghost” of the food that it once was. It’s like an outer shell with the insides missing. The nutrients have been processed away, to make a long story short. When I think of how I seriously deprived my body of optimal nutrition for about 8 years of my life, and how the onset of my CVS was in my last years of college, it makes sense that lack of optimal nutrition was a factor in my body finally deciding to genetically express the CVS that had lived within me all along. To be clear, I am not saying that my poor nutritional choices “caused” my CVS, because I always had the genes for it. I am saying that multiple factors stressed my body to the point that CVS manifested in me at age 25. I strongly believe that diet is one of the major factors, among many others, that helped to open the door that let this beast escape the confines of my unexpressed genes. And, based on that, I feel that I can do a lot for my body by simply eating for optimal nutrition.

So, I bet you want to ask me question that might go a little like, “What diet are you on?”. The answer is that I don’t follow any specific “diet”. There is a lot of information out there online, and everyone should research this individually. I don’t think there is one diet that fits all, or even fits all CVSers. You have to experiment, adjust, and tweak. Some people have multiple health issues that complicate matters. For example, if someone has CVS and has a disorder where they can’t digest fiber, then raw fruits and veggies aren’t going to be the wisest dietary choice.

With that said, below is an outline of they type diet I try to follow. I hope it gives you an idea of what my food goals are. If I had to point you towards a diet, I would tell you that I follow the “principles” of the Paleo Diet more than any other. I believe it to be a clean, natural way to eat. However, I don’t eat near as much meat as the true Paleo Diet would call for. I believe in eating as little meat as possible and getting my protein from plant sources as much as possible. I am not a vegetarian, as I do believe that some meat should be included in a well-rounded diet, but I believe we should restrain ourselves and limit that intake to a much smaller amount than is normal in today’s society. Also, I still eat grains, while trying to avoid gluten as much as possible.

Nearly all the recipes I cook with come from Paleo Leap.

  • Fruits and veggies
    • All of them and as many as possible
    • Eat the rainbow. The more, darker, deeper, brighter, intensely-colored, the better
  • Omega 3 fatty acids
    • Nuts like almonds and walnuts
    • Various fish. Wild caught when possible
  • Lean protein
    • Red meat, poultry, seafood
  • Avoid caffeine
    • Sleep disturbances
    • Headaches
    • Crash and burn
    • Perpetuates fatigue
  • Avoid simple carbs
    • Caffeine
    • Sugar
    • White flour
  • Avoid artificial sweetener
    • Like aspartame or saccharine
    • Use sweet potato, carrots, squash, etc…
    • Use honey
  • Avoid gluten
    • causes inflammation in the gut and body, even if you don’t have celiac disorder

Maybe the most important thing is to keep a food journal. I have a hard time keeping one of these strictly too, but they can be most enlightening if you do them for long enough to see patterns emerge. The main thing I notice is that before, food was almost the bane of my existence. I was terrified of food and I nearly always felt bad after eating it. I always wondered if the next bite I took would be the bite that sent me into my next episode. That has changed for me! Now, when I eat a meal of 80% fresh fruits and veggies and 20% protein and simple carbs (like potato), I feel satisfied and energized after eating. I don’t have that yucky full feeling anymore. I feel like I have nourished my body and I feel better for having done so. It’s an amazing and noticeable change. Although I do give in to the occasional craving, I will never go back to my earlier eating habits. I have found that they more I eat properly, the less my body will tolerate any crap. In other words, I often pay for it when I give in to the temptations that the culinary world presents to me. The work environment is often a stumbling block for me, when I want to try the latest homemade recipe brought by a co-worker who doesn’t use the same ingredients I use to cook with. Sometimes I resist, and am sad to have missed out, yet happy because I still feel good. Other times I give in, and it tastes SO GOOD, but I’m paying for it dearly within 30 minutes. It is what it is…

So, now I bet you are wondering something like, “Well, has it helped?” The answer is YES!! It has helped tremendously. I mentioned above how I don’t have the fear of food or bloating after eating anymore, but I also have improved my symptoms over the course of time. I haven’t had a full-blown episode in over 3 months now. Some other factors involved are supplements, but I can tell you that since changing my diet drastically I feel better on a daily basis. I have more energy, mental clarity, and motivation. I truly feel like I am treating myself slowly, but surely, and feel more “normal”. This isn’t magic, and it isn’t like taking a pill. Nothing happens overnight. I still have bad days. But over time I have stayed the course, and I really am seeing the positive results. Even if these diet changes didn’t do anything to treat my CVS, they are still making me a healthier and happier person, which can only help my body to deal with CVS, so I feel that the changes are worth it, no matter what.

One last thing, for those of you who are moaning, and whining, and sniveling, “….but I hate vegetables….”. I can tell you this in complete honesty. Our taste buds change. We have desensitized our taste buds and changed them with today’s flavor enhanced foods. I used to hate things like carrots and sweet potatoes. Once I made the changes, after a while my taste buds began to change again. To my advantage this time. I began to find that I was enjoying the flavor of foods that I never enjoyed before. This has only gotten more amplified with time. I now LOVE most veggies and fruits. To me they taste natural, and clean, and earthy, and then unique in their own way. Some are sweet or have flavors that I don’t know how to describe. Subtle flavors seem satisfying to me, and artificial flavors are overwhelming and distracting. I can appreciate flavors in a way I never could when my taste buds were saturated with sugar and other chemicals. It’s lovely actually. So, there is hope for you too, my friend. No one said it would be easy. This is medicine. But if you stay the course, it will be worth it. Because isn’t it worth it to give up a little bit of “flavor” in order to improve the quality of your life?

If you are reading, I hope this helps you. I’m just a Warrior, fighting with (hopefully) calm strength and knowledge to improve my symptoms and live the best life possible. Eating clean and healthy will not only help those with chronic illness like CVS; it will help anyone who wants to feel better and live a healthier lifestyle regardless of other factors.

Stop Judging and Labeling CVSers! We Are NOT Drug-Seekers!

I recently came across an article online, from Gomerblog, that made me so furious that it has taken me a month to write and post about it. The name of the article is: “Drug Seeker Fills Entire Emesis Bucket With Noise Before Receiving Dilaudid“.

The introduction to the article names a person and labels her with a “mysterious case of opiod-induced gastroparesis” However, this label was not what the original article said! It read, “Cyclic Vomiting Syndrome” when the article was first published online about one month ago. You might imagine my reaction…

Below I copied and pasted the entire article from Gomerblog, with their apology comment, for your convenience. Click here to visit the actual article online.

DAYTONA BEACH, FL – Deborah Samson, a 47 year-old non-diabetic drug seeker with a terrible but mysterious case of opioid induced gastroparesis, was forced last week to languish for approximately 25 minutes before receiving the parenteral narcotic she so desperately demanded due to the callous inattention of local Emergency Department staff.

During that time, Deborah consistently emitted sounds which were mistaken for those of a yak being run over by a train.  The horrid, violent wrenching quickly filled the pink emesis bucket with an amount of noise never before produced by a human.  She then spat out 0.5mL of clear saliva and asked for another bucket, and the entire process began again.

“HHAaaaaaYAAAAKKKKKKKKKKK…pheeewtoo”

“I have a horrible disease!!” she managed to scream between bouts of vile and guttural moaning.  “My stomach empties entirely too slowly — you can look it—-yaaaaakkkk— up because it is on record here.”

The test to which Deborah referred to, is a nuclear medicine gastric emptying study, which determines how quickly a meal exists the stomach and enters the upper intestine.  Despite the fact that she had three different bowel-slowing narcotics in her system, her doctors were puzzled as to why her stomach emptied at a mere fraction of the rate of a normal person’s.

When seen in diabetics, gastroparesis leads to frequent bloating, early satiety, and vomiting.  When seen in non-diabetic opioid induced gastroparesis drug seekers, it leads to incredible amounts of abdominal pain and vomitus consisting of 99% noise.  The sound of a non-diabetic drug seeking gastroparesis patient vomiting is said to sometimes measure on the Richter scale.

According to Deborah, the only medication which will stop the flow of noise emanating from her innards is Dilaudid.  Unfortunately, it also slows her intestinal transit time even more, so the cycle repeats itself.

When it was recommended by Dr. Herb Eaversmells, a local gastroenterologist, that she try to wean herself off of narcotics since they were only exacerbating her problem, she replied, “I’m never seeing you again.  I can’t live without my percocets, fentanyl patches, and IV dilaudid.  Get out of my room now, you quack.  You are starting to upset my gastroparesis.  Tell the nurse to bring me a large bucket and some more dilaudid.”

***End of Article*** The paragraph below is pinned to the top of the comments list after the article.

**Gomerblog OFFICIAL STATEMENT** Ok normally we don’t like to intervene in the comments section, but we feel obliged to this time. First off we would like to apologize for including Cyclic Vomiting Syndrome (CVS) in the original article. It is a horrible disease and should not have been lumped together with drug seekers. We edited it to “opioid induced gastroparesis” which is a better reflection of the articles original intent. Unfortunately drug seekers and “actors” are the true problem for us medical professionals and for patients with real gastroparesis. These drug seekers put on all kinds of shows in the ER and make it very difficult to discern real disease from drug seekers. Opioid abuse is rampant in the US. In 2012, 41,000 people died because of drug overdoses. In 2011, 2.5 million ER visits were the result of prescription drug and opioid abuse. Medical providers who prescribe opioids are putting their medical license on the line and are responsible for the outcomes and it puts us in difficult situations sometimes. The articles intent was to shed light on how ridiculous and how low these drug seekers stoop to acquire narcotics. Opioids cause nausea + vomiting, and are probably a poor choice in gastroparesis patients for this reason. The article is not making fun of true gastroparesis patients but rather the drug seekers bogging down our system and causing professionals to become jaded with their acting. We apologize if you have true gastroparesis and were offended. It was not our intent. Gastroparesis does have real complications and can lead to serious morbidity and mortality. Opioid abuse does too though.

Angry and hurt don’t even begin to cover the emotions I felt after reading it. (To be clear, I read it long before the “apology comment” was added.) And I wasn’t alone. After many outrageously angry comments from sufferers of various true disorders, someone decided to change the label of the woman in the article from “Cyclic Vomiting Syndrome” to “opiod-induced gastroparesis. . And made the apology statement and acknowledged that CVS is very real and very terrible. They defended the article by claiming it is “satire” associated with the behavior of true drug-seekers. It’s not enough for me, so I’m speaking up. It’s the satiric attitude that is damaging to those with true illness in the long run.

A lot of damage was done here. Stigma and misinformation was spread far and wide. I saw more comments from medical professionals who laughed and clearly stated that they don’t believe in our illness(es) either. The comments were exceedingly condescending and judgmental coming from people with whom I have no choice but to trust with my life when I need the ER to prevent life-threatening dehydration/electrolyte imbalance. It made me feel judged, alone, and scared to trust the ER in the future. Which can lead to my failing to go to the ER when I need it the most.

This is going to stir up a ton of emotions. I’m angry too. But it is a topic that needs more attention, so that’s what I’m giving it. Despite the anger that I know the article will incite in CVSers, we should all know exactly how others are potentially MIS-judging us and MIS-labeling us. There are people in this world who are so addicted to their drug-of-choice that they will learn the symptoms of medical disorders such as CVS, gastroparesis, etc… with the intent of “acting” sick in the ER to obtain the drugs they require.

This drug-seeking phenomenon is apparently so common that ER staff have become jaded, and in many cases seem to leap to the “drug-seeker” diagnosis without giving the patient the true benefit of the doubt. This is a huge problem, because as more time passes, more and more people with legitimate illnesses are being turned away from the ER due to the “appearance” of being a drug-seeker. This is a fact. It has happened to me, and to many people I know and correspond with.

Another frightening fact is that CVSers can die from things like dehydration and/or electrolyte imbalances when those symptoms are ignored or treated inadequately. We are frightened as well as miserable in our suffering when we seek the ER for help.

I know from experience that once they make the decision that you are a drug-seeker, there is no amount of begging, pleading, or reasoning with them that will change their minds. You might as well walk out and try another ER, because all of your anger and righteous indignation will only be seen as further evidence that you are in a belligerent state of drug withdrawal.

Can you imagine how you would feel if you knew your body was very sick to the point of dangerous outcome, and you went to the ER for help, and you were turned away due to the misconception of being a drug-seeker? I don’t have to imagine how I would feel. I’ve felt that way before. I describe it as a feeling of helpless anger and terror.

In the apology comment, the author of the article does admit his mistake. But I think the entire point is that he/she got it entirely WRONG at first! This person has had experience with drug seekers, and apparently bases his/her future reactions on those experiences first. It wasn’t until some angry readers brought it to his/her attention that there are legitimate disorders which cause these exact same behaviors, that he/she retracted what was originally said and apologized for any implications otherwise. If I had met this medical professional in the ER, I would have been at the mercy of his/her snap decision of me. And he/she would have been wrong! So, then what might have happened to me as a result of this incorrect decision? It’s a scary thought.

I have become so electrolyte depleted in the past that ER doctors have told me that I am in danger of cardiac arrest. This happened within a couple hours of episode onset. It is not always that intense, necessarily, but sometimes, with some people it is. (Thankfully my episodes aren’t quite that intense recently.)

The implications of being turned away from the ER due to the appearance of being a drug-seeker are much more severe than it might seem at first glance! I hear of CVSers being turned away from the ER on a daily basis and it is absolutely unacceptable. I am scared for my friends and what could happen to them.

Yes, drug-seeking is a terrible thing, and is costly to the system. It also misdirects the ER staff attention from those who are truly sick. It causes distrust and uncompassionate behavior between medical professionals and patients. But it also causes the people who truly need help to distrust medical professionals and feel animosity towards them.

However, if you are a medical professional, I implore you to refrain from the “satire” that was displayed in this article. I further implore and challenge you to take a different approach the next time you suspect a drug-seeker in your path. I can understand the frustration of giving the drug-seekers what they are seeking. But please see that is their karma, not yours. Wouldn’t you feel much worse if you assumed incorrectly, and someone in true need of treatment was turned away by your judgment? I deeply feel that it is much better to err on the side of caution, than to risk an error that could affect someone so negatively and deeply.  It is not the job of you as the medical professional in the ER to intervene when someone is abusing drugs. It is your sole job to administer treatments for illnesses/injuries and prevent people from suffering pain or dying from those illnesses/injuries. You are not a judge nor a jury, and have no right to impose “your form of poetic justice” on the individual, regardless of their crimes.

Change begins with us. Be the change you wish to see in the world. Thanks for listening.

 

 

Carebags are the best puke bag you’ll ever use!

So, not all people get excited when a new and revolutionary puke bag is invented. But we CVSers do!!! How many of you wrestle with buckets, pails, plastic Wal-Mart bags, Ziplocs, or loud and crackly blue emi-bags when in episodes? How many times have you had one of those bags leak and ruin everyone’s day? How about when it gets full, but you’re still vomiting, and there’s nowhere to place the other bag without spilling the liquid? How many times have you needed a puke bag, but had to reach for the closest substitute. How many times have you gone somewhere, and needed to have a puke bag on you at all times, so you needed to carry a bag or purse to store it, because you can’t fit your puke bag into your pocket. Especially the ladies. What if we dress up and go out on the town? Where will we store our large, bulky items into which we vomit?

Thankfully, there is a brilliant company from France, called Clean Is, that came up with something different. Carebags from CleanIs are the newest thing in the field of containing medical waste. No, I don’t work for this company. I have no reason to promote them whatsoever. But I did stumble across their product, and I couldn’t resist trying it. So I bought some and tested them out upon arrival. They worked so well that I felt the entire CVS community needs to know that they are an option.

I’ll keep this short and sweet. They are freaking awesome! You will never go back, and you will wonder what you ever did before you had these!

  1.  They are small (25cm x 25cm), and made of a material like trash bags. You can fold it up and put it in your pocket, or even stuff it down your bra without it being noticed. They aren’t bulky at all. In fact, you could probably fit a couple in your bra (without increasing cup size lol)! They are discreet, and no one will realize what you are carrying around with you, even if you flash it briefly. So, portability is a huge plus for this product!
  2. There is a little absorbent pad, able to absorb up to 16 oz. (450 ml) of liquid, which lives inside this small bag. When you first see it, you won’t believe me. Period. You won’t. So just try it and prepare to be amazed…

So, I then proceeded to pour coffee cups full of water into the bag. After the first cup I watched the pad slowly absorb the liquid, and thought, “Oh, ok. It will eventually soak it all up.” I just needed to be a little more patient. By the time I got the 2nd coffee cup of water in the bag, there was no more liquid to be seen, and a small corner of the pad was swollen. I kept going. The pad continued to soak the liquid and became swollen beyond belief. As the pad continued to become saturated, it morphed into a gel type substance and no longer looked like the pad. I fit 10 full coffee cups of water into that bag, before the pad (which had become a huge wad of gel) began to super-saturate. Before the 10th cup, the bag was full of gel. No liquid. I could run my fingers through the substance without getting wet hands. The bag has a draw string closure like a garbage bag. I closed it up and turned it upside-down. Not one drop of liquid or gel leaked!

It’s amazing folks, simply amazing! Also, the gel absorbs the smell of the vomit! So, you can stop worrying about the smell bothering your caregivers, as well as making you need to vomit even more. Also, if you are driving down the road (yes I have been in that situation), or your caregiver is driving you, and you drop it because you can’t hold your arms or head up, it won’t spill and cause a stinky, nasty mess to clean up later! Sooooo cool!

I bought a case of these on Amazon for about $25. Very affordable! But guess what? The company that created the bags, CleanIs (French company) has teamed up with CVSA in efforts to help us raise funds! Click this link for the instructions on how to purchase these through CVSA and Amazon Smile. From now until the end of December, you can go to AmazonSmile to purchase these, and a portion of the cost is donated back to CVSA. Also, the company will give CVSA members a $3 discount on the product to purchase them through the AmazonSmile link, so that CVSA can receive the proceeds. If you haven’t signed up for AmazonSmile yet, you’ll have to go there and designate the CVSA as your charity of choice to receive the proceeds. There is a process to do this, and if you need instructions they are all given in detail here.

This is a great way for CVSA to benefit, but it’s also a great way for US to benefit. These things truly make life as a cyclic vomiter a little bit easier. I truly hope this can help others like me.