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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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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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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.

Birthday Girl Gets An Episode

Written on 10/22/14

Happy birthday to me! In 8 years of having CVS, I had my first episode on my actual birthday when things were planned for me. I’m not a fan.

Drove to Birmingham to meet my best friend. 2 hour drive. We got nails done and met friends for dinner. I played it so safe and only ate whole foods all day long. Nothing that has ever been a trigger. No alcohol at all. Trying everything to prevent what I felt would happen in the end.

Speaking of that… Which was it? Did I have a feeling that it would happen, and that feeling came true? Or do I always have a feeling things like this will happen when I have positive excitement, and when they do happen, I  then later I just assume my feeling came true. But, could it have been that it would have come true anyway, or it might not have, and my “feelings” have nothing to do with it? Like a self-fulfilling prophecy almost? That probably makes no sense at all to anyone other than me…. But I wonder how much my excitement and anxiety push me over then edge, or if I would have gone over anyway…

Any who… I started feeling the prodrome during dinner and tried to ignore it and make it go away. This rarely works but I’m still stubborn and try. Then I took meds. No effect at all. Still nauseous. We were scheduled to play laser tag after dinner because that’s what I had told everyone I wanted to do. We go there and I decide to try to vomit in the bathroom and stop it before it started. So I did. And felt better for all of about 5 minutes. Then it all came back. This is while we are waiting to be called back for laser tag. So, I got to a point that I knew I wouldn’t make it out of there without vomiting, and I also knew I was getting too nauseous to have any kind of fun, and getting on my way to being too nauseous to function. I didn’t want to get stuck inside that maze and need to puke. So I very embarrassingly told everyone who showed up to play laser tag with me that I was too sick to try to play. They were understanding but I felt like a complete ass anyway. They were only there because I wanted to do that. My friend had bought my tickets and they were non refundable, which made me feel horrible. I went to the car and puked in the backseat while they played. They tried to get me to let them take me home right away, but there was no way I was going to let them all leave without at least playing the game they had showed up and paid for. So, it was about 30 or 45 minutes in the back of the car puking and waiting on them. Of course, by the time they came out I was much worse than when they had left me and they all felt horrible about it.

My friend brought me back to her place where I completely destroyed the guest bedroom of her apartment with my flailing and thrashing about all night. I’m sure her apartment neighbors could hear me puking and no one got any sleep at all. She had to go buy me Gatorade in the middle of the night. She’s an amazing friend and she didn’t complain at all. But she did get really upset. It’s the 2nd time she’s seen me in episode. She gets upset when she can’t do anything to help. I nearly felt like I needed to comfort her, instead of the other way around lol.

Oh, and I tried the injectable sumitriptan. She injected me with it twice, as directed, throughout the episode, and neither shot did any good at all. Nothing. Nada. I didn’t even get the weird sensations people say they get for a few seconds when they take that stuff for the first time. I didn’t feel anything from it. Not a blessed thing. The “things migraine” don’t ever seem to help me at all, and that’s been consistent for years. So, now I know yet another abortive drug that DOESN’T work for me lol.

Also, we talked about how I probably shouldn’t go on our Girl’s Trip weekend that we have planned in November. To the Grove Park Inn and Spa in Asheville, NC!!!!! A RELAXING trip, no doubt, that would become much less relaxing to the others when I interrupt it with an episode. Because I look forward to it so much that I get sick, no doubt. I try not to be a pessimist when it comes to this thing. I try not to let it control me or keep me from living my life. But I have been back on a once a month, if not more, pattern for several months now. That’s a big flare up for me, and something, I’m not sure what, is not letting my efforts with diet count for fewer episodes.

I think my hormones are changing, based on occasional erratic periods that are becoming erratic more frequently, despite that the ONE hormone test I’ve had done recently says “normal”. And I think that hormones and positive excitement are my most consistent triggers. I think by keeping hormones under control I have fewer episodes, but when they are out of whack I have more that happen during positive excitement circumstances. Just grasping at straws as usual when I’m discouraged….

I know my diet is helping, and that it might take years for it to help on a large-scale. But I feel that hormones and positive excitement are triggers outside of that box, if you will, and those are going to need to be addressed separately.

So, I’m feeling a little down about having to step back from the spa trip that I have already paid for. I don’t want to go get sick, and I don’t want to ruin their time if that happens. There will be more in the future. sigh…

Back to the episode….

I wasn’t at home, 2 hours away. I had my meds with me, but none of it worked at all. I couldn’t fall asleep, period. I flailed around for nearly 24 hours before giving up and calling my parents to come get me. They had to turn their day upside down to do it, but they did it. I love them. And they brought me all the way home. I slept for 30 minutes on the drive home, and that little bit of sleep helped to stop nearly all the nausea. It gradually went away after that, but was tolerable, as opposed to before at her house where it wasn’t subsiding enough for me to drive home. I actually talked to my dad most of the way home, which is a good sign for me. If I’m nauseous, I’m generally not talking unless it’s absolutely necessary. Then I got home and finally smoked. And it all went away. Just like that. Makes me never want to leave the house, and how sad is that???!!!

It took 2 days for my energy to come back though. I stayed in the bathtub nearly all day on Monday, and spent Tuesday making food that I can eat for the rest of the week. My hubby is out-of-town and I didn’t realize how much energy it would take for me to be by myself the 2 days after an episode. I should have realized, it’s like this every time I can’t stop them and they go on for any amount of time. But I didn’t realize, and ended up taking 2 days off work this week that I didn’t have available to take. I’m out of sick leave and covering with my vacation time. Which blows. But I’ve been out of both before, and I shouldn’t complain as long as I have some time to use.

Something has to give. Why oh why am I in this flare up that won’t stop? Hormones? Anxiety still?

I’m very stressed in my personal life, and I don’t handle it well. I have made lifestyle changes that help me to feel better between episodes and about my life in general, but aren’t helping my episode frequency per se. I think I’m emotionally overwhelmed at home. I really think it’s making things worse. But how do I do anything about that? I can’t stop the daily stressors of life?? I try to handle them well, but some things just make me so upset that my body is getting distressed too. These are the things that we can’t escape in life, so I don’t know what to do.

 

Woman Crying

 

My Supplement Regimen

Written on 10/14/14

I thought I would share what I’m using in the way of supplements. I’m trying to do the most with supplements and natural preventative methods such as diet and lifestyle changes. I’m really stepping up my game here. I am weaning off nortriptyline and these will be my only preventative.

Currently taking:

CoQ10 – Bio Sorb Active Q Ubiquinol twice daily from Epic 4 Health. Ordered online and get a discount by stating that I use it for CVS.

L-Carnitine – Naturally Carnispan Time Release L-Carnitine Fumarate twice daily also from Epic 4 Health and get a discount.

I had my CoQ10 levels analyzed when I went to Dr. V last week. Just got the results, and I am more than twice the number of the upper normal range. I’m only slightly above the range Dr. V recommends, so I’m backing down and taking them twice daily rather than 3 times daily, which I have done for several months now. Now that I know I am established in CoQ10, I’m going to try adding the riboflavin and magnesium to see if it helps. While searching I found the products below.

Just ordered and am about to start taking:

Preventa Migraine- with PA Free Butterbur Root (Petasites), Magnesium, Riboflavin, and Feverfew– 60 capsules. Sold by: Family Tree Remedies. I ordered this online through Amazon Smile and ensured that CVSA got their donation from the sale. Price was $38.09, should last a month. It is free of pyrrolizidine alkaloids (PA), which is important to be aware of if you buy this product. PA damages the liver. This one is safe in that regard.

Sold by: AJM Nutrition Price $31.49. Also got this through Amazon Smile. I have been really wanting a good probiotic to support gut health and digestion, and these are the most natural ones I have found. And they have 32 different probiotics, not just 2 like the ones in the drug stores. They also seem to be from a reputable company as well. I read that Garden of life Raw probiotics are the #2 probiotic listed out there today. The #1 product was not natural, however, so I went with this one.If anyone has used any of these before, I’d love feedback.

 

Goal = Wean Off Nortriptyline

Written on 7/18/14

Wow, I’m really gonna do this!!

I saw the psych today that scripts out my nortriptyline. Last time was 6 months ago. I updated him on going to the conference and about finding the positive correlation between my having regular episodes and wearing the Nuva Ring. He agreed when I told him I’d never take hormonal birth control again. I told him about going on the supplements seriously and how it has made a drastic difference in my energy levels. He seemed excited (genuinely so, I think) when I told him I’d been running about 10 miles per week, and that I have hardly any anticipatory anxiety about episodes. He loves that I am using exercise and diet as preventatives. We also discussed that nortriptyline is now a class D drug in terms of pregnancy. (*note* I have since learned that this isn’t true, and it is still class C.) He agrees that it is dangerous for me to take it when I am not able to use a more reliable form of birth control. So, when I suggested weaning off, he was very supportive and completely on board. He said he thinks I’ve come a really long way and he thinks I can do this!! He is very encouraged that the natural route seems to work on me and encourages me to keep it up. I really think he trusts me when it comes to managing my medications! Such a good feeling, for a change, to be praised by him, (or any doc). I have felt in the past that he didn’t really know what to do with me, even though he’s never made me feel like a nut. I think he was encouraged that a tough patient is doing well. I left feeling good and with confidence that he is supporting my decision to do this.

I have SO got this! Hoping I don’t have to eat those words later, but I really think I’m going to be able to do it. Cheers! [smile]

My Pretty Binder for My Ugly Disorder

Written on 5/6/14

I am in the process of making a “CVS Binder” (a two inch 3 ring binder) that will basically go everywhere I go and that I will give to ER staff and doctors who don’t know me.

I’ve included the following “sections” separated by tab pages:

An “intro” section at the front where I typed a brief statement (“Hello. My name is Angie and I have CVS”) telling who I am and what I have going on with me. I mentioned that I might not be able to communicate but that all the information they need is in my binder that I brought for them. This section also has the “What is CVS?” document from the CVSA homepage, and some other 1 page documents describing CVS in general and briefly.

A “current medications” section where I list in detail meds, dosages, frequency, and time of day taken. i list current meds regularly taken, as well as meds that I only occasionally take including over-the-counter supplements and vitamins.

A “medical history” section where I chronologically list every doctor appointment and lab results associated with it. Also any diagnosis complete with the diagnosis code is highlighted throughout. I used different colors for different docs. I used green to indicate episodes, and I even used orange to document events like vacations that happened around episode time that show a strong correlation to positive excitement. Also my periods are documented and they also show a very strong correlation to episodes.

(It has been super helpful going back through all my old medical history documents and piecing it all together chronologically. It turns out that the two times in my life when I had episodes every 1-2 months was when I was using the Nuva Ring! Now I’m CONVINCED that my hormones are one of the biggest players in this game my body is playing.)

A “tests” section where I have copies of all the important tests they have done to me over the years to rule out everything else and diagnose me with CVS. Including MRI results and blood work.

An “episode diary” section where I have copies of all my entries for each episode and list detailed info about the actual individual episode I was experiencing at that moment.

An “Empiric Guidelines” section where I have many copies of it to give to anyone I think will read it.

A “CVSA” section where I have Code V articles, a list of the CVSA medical advisors and their contact information. And any other general CVSA stuff I want to throw in.

And a “research articles” section where I have all the lists of the research articles as well as a few of the more important articles printed out to keep there for doctors to reference.

My goal is to have 3 separate identical binders in the end. One for each vehicle so I’ll always have one with me. I’ll take one when I travel and on vacation. I travel alone for work a lot, and other people have no idea about my disorder, so this could help if I were in a situation where other people had to care for me that aren’t used to doing so. This binder will introduce anyone to CVS, and give them the ability to look back into my medical past in as much detail as they want without having to go find or wait on records.

I have this little dream that I could have to go to the hospital alone, and I hand them the binder at the ER, and they read it, and I don’t have to speak a word because they understand what to do, and then they do it! Ha! Well, wouldn’t it be nice if it were to work that way, but I doubt it will. I’ll still dream it though [smile]