It's All In Your Head

I learned early on in my sick life that if doctors can’t figure out what’s wrong with you, most often times, they will eventually tell you or your parents that you or your child’s problems are not physical, but rather all in their heads.  They make sure they tell you they tested you or your child for every physical ailment and that every test came back unremarkable so the problem most likely is a mental manifestation.

The bottom line is that doctors would tell you either we are making ourselves sick or our parents are making us sick for attention. Unfortunately, I have read about a couple of families whose children were placed in psych wards to undergo mental treatment because as much as their parents loved their children, they thought that by believing the doctor, they were doing the right thing for their children.  They believed whatever the doctor said as if it were God's own words.

Then, there are the doctors who instead of blaming the patients for making themselves sick, they blame the parents for their child's suffering.  If the doctors can’t figure out that it's CVS or the Abdominal Migraines causing the patients' symptoms since CVS is a diagnosis of exclusion, they then turn to the parents and pick them for perfect candidates for Munchausen Syndrome by Proxy, which is a factitious mental disease in which the caregiver fabricates or causes symptoms of a child for attention.  I know of one parent whose children were placed in foster care because they thought she was making her child sick and subsequently keeping her child out of school, so the damage doctors make by a misdiagnosis can be costly and devastating for the whole family.

I remember in the infancy of my illness, after all the tests they performed came back negative, one doctor turned to my mother and blatantly asked her if she was making me sick for attention.  I remember this day clearly because my mother and I never argued with doctors until that moment.  We didn't realize how destructive doctors were until my mother was blamed for making me sick after the social worker ruled out bulimia and anorexia.  At that time, we respected medical providers, even revered them, but that all changed after that moment.  One thing that I didn’t know was that this was just the beginning of my unhealthy relationship with medical providers.  It was only because I came to the realization after several meetings with doctors and nurses that they were humans just like me, and that their shit stinks as do mine. They were not gods. That was when my respect for them dissipated and I considered them my equals.  After all, I suffered years of abuse and neglect from several doctors and medical facilities which made it easier for me to change my view on medical providers and the health care system. 

The day they accused my mother for making me sick was the day that changed our lives forever.  We learned from that day forward, that in order to get answers, we were going to have to fight for my life, and fight for a diagnosis instead of being constantly told that it was all in my head or that my mother had Munchausen Syndrome by proxy. 

I must note that while fighting for answers, and after hearing time and time again that it is all in my head, for a short while, I wondered if they were right.  I questioned myself, and wondered if maybe it really was all in my head, but as quick as that idea entered my thoughts, it left even quicker.  I knew what I had was real, and I knew for damn sure I wasn’t making myself sick. When you get to this point CVS sufferers, slap yourselves for even thinking that!  Doctors want us to think we are crazy and that we are doing this to ourselves because it makes their jobs easier.  The pain, the vomiting and the nausea was and still is so intense that I truly wouldn’t wish this suffering on my worse enemy.

When it comes to Abdominal Migraines or Cyclic Vomiting Syndrome, you need to be resilient; you need to be an empowered warrior because this is going to be the fight for your life, the most important type of fighting.  It is the fight to survive, which is the greatest success anyone can overcome.  You need to believe that what you have is real no matter how many doctors think you are crazy. You have to trust and believe that eventually, a smart doctor will realize that after all the negative test results, and your continued symptoms, that it might be Cyclic Vomiting Syndrome or Abdominal Migraines. These are two disorders that are usually coupled together. They diagnose you with both if you have severe pain involved and sensitivity to light, noise, and smell and if no pain is present during attacks, doctors then diagnose you with CVS alone.  Unfortunately, I suffer from both, and the pain is worse than my labor pains were in addition to my recovery after my C-section.

Again, I can’t stress this enough, Cyclic Vomiting Syndrome and Abdominal Migraines are diagnoses of exclusion.  What that means is that it is a diagnosis that is reached after all the necessary testing have been done and all results are negative.  In addition, there are no tests to diagnose CVS or Abdominal Migraines.

That is to say, diagnosis is made only after every test has come back unremarkable, and the symptoms fits the etiology.  Because of this, unfortunately diagnosing a patient with CVS or Abdominal Migraines may take longer than five years.  I have personal friends who were sufferers for decades before they were diagnosed.  I was extremely lucky because it took me only a year to be diagnosed and that  year felt like an eternity because of all the unexplained suffering and the looming threat of death. That is why I stress that if you think you have CVS, one must be an empowered warrior who never gives up even when all the odds are against you.  After all, it’s your life for which you are fighting.

It is so vital to educate people and medical professionals about CVS.  Not until you find a knowledgeable doctor will you be diagnosed with Cyclic Vomiting Syndrome and/or Abdominal Migraines.  Once you come to terms that it’s not in your head, you can move forward and look on the Internet to find a knowledgeable doctor who is aware of CVS/Abdominal Migraines in your region.

Google the Cyclic Vomiting Syndrome or National Organization for Rare Disorders.  They will help you start your journey of managing CVS/Abdominal Migraines.  Also, be resourceful and look for support groups so that you can talk to other sufferers and know that you are not alone. 

As a matter of fact, Facebook has several support groups, and YouTube has testimonies from other sufferers and information sessions from CVS Specialists.  These avenues were not around when I was diagnosed in 1997, so even though it has only been fifteen years, we have come a long way in the awareness, knowledge, and research on these disorders.  This alone will spare the emotional and financial damage the lack of awareness and knowledge has on CVS sufferers and their families.

All in all, just putting a name to what’s been ailing you or your loved one would truly bring a great sigh of relief, especially now that you know that all your pain and suffering was never ever all in your head.

For Barbara Bond: A Poem

As a frequent flier in the hospitals, I meet all types of other sick people.  Most of the ones that are close to my heart are the patients who were my roommates during a hospital stay.  This poem is about one of my hospital roommates, who displayed strength, tenacity, and positivity despite her health setbacks.  I thank her for giving me hope and strength when I thought I lost it all.  Thank You Barbara Bond. 

For Barbara Bond

My sixty-year-old hospital mate’s name is

Bond, Barbara Bond,

But in no way is she related to

Or is anything like, Bond, James Bond.

She doesn’t have a license to kill,

Nor does she work for the British intelligence, MI-6.

Hell, she can’t even work because she is so sick,

Has a vascular disease, diabetes,

And acute intermittent leukemia.

If she were ever to be chased by any enemies

She would be caught

Because she lost both her legs battling diabetes.

She doesn’t own an extravagant bulletproof car

That can turn into a submarine,

Instead she owns a wheelchair

Although it’s not an electric one.

But Barbara Bond has gadgets that save her life,

An oxygen machine, and a device that checks her blood sugar levels.

She likes taking her pills and her injection of insulin

In the morning, not night

While James Bond likes his martinis shaken, not stirred.

She may not have a license to kill,

But she does have a license to reach out to me

To tell me not to give up

Because everything will be okay.

The world is enough for Barbara Bond though it isn’t for James Bond

But both of them would rather die another day.

Hot Baths As An Escape to CVS Suffering

For sufferers of Cyclic Vomiting Syndrome, taking obsessive hot baths is paramount to dealing with our symptoms in the home setting.  There are other ways CVSers self-medicate, such as cannabis use, ginger use, and prescription medications, but the most legal and best relief from an episode is taking a really hot shower.  However, this is not to say that all sufferers use hot baths to alleviate symptoms nor will it relieve every CVSer’s symptoms.  In fact, my good friend who also has this disorder does not take showers at all to alleviate her symptoms.

I believe that there is a scientific explanation as to why we find comfort immersed in hot water. It has something to do with the vagus nerve and for the fact that the hot showers are so hot that our mind focuses on the heat of the shower than on the CVS symptoms. I can’t tell you how many times I came out the shower with superficial burns on my body because I would spend hours upon hours in the hot water just so that I can escape the CVS.

Temperature is really specific.  The shower has to be hot, if it is not the right temperature, it will not relieve your symptoms. So for all those CVSers looking to move or relocate, make sure you check how hot the water gets when buying or renting a home.  I actually got out of leases because if I was told that the water got hot, and it did not, I used that as grounds for ending a lease since hydrotherapy is what is needed for us to cope with CVS.

I also want to note that in Amsterdam, there was a study that blamed chronic cannabis use to CVS and the obsessive use of hot showers.  I was thirteen when I was diagnosed with CVS and learned somehow that hot showers alleviated my symptoms and I did not chronically used cannabis.  With that said, when talking to a medical provider about these hot showers and CVS, make sure you tell them if you do or do not use cannabis.  My advice for those who do use cannabis is to stop using cannabis to see if it is the cannabis that is causing the CVS and the obsessive hot showers.  For some, stopping cannabis worked for eliminating their CVS symptoms and obsessive hot showers and baths.  For others, cannabis is helpful to use to alleviate the incessant nausea and vomiting and is not a cause for their CVS or their need to take tons of hot showers.  It is important that I note that this is why CVS is so individualized because what works for some may work for none.  It is so important to keep a journal to see patterns in your food choices, medications, or certain behaviors that cause or stops an episode.  That is how I found out that my menstruation and lack of sleep was a major trigger for me.

I don’t know how I started taking these hot baths, nor did I know that other sufferers were doing it too.  I didn’t feel so crazy burning myself when I learned that this is a normal response for most sufferers.  When I am in the throws of an episode, I long to get into the scalding hot water so that I can have a break from the vomiting and relentless pain and nausea. The only draw back to this method of self-medicating is that once you get out the shower, the symptoms come back full throttle.  With that said, I spend hundreds of dollars, and gallons of waters to alleviate my symptoms.  When I am in an episode, I don’t care about how much water I am going to waste or how much money I am going to spend taking such long hot baths.  My only concern is relief and escaping a CVS episode even if it is temporary. 

My love for the hot showers during an episode actually inspired me to write a poem about my experience. So please enjoy my poem.  You may not understand it if you are not a sufferer, but I am pretty sure if you do have CVS, this will make sense.  Enjoy!

Cyclic Vomiting Syndrome

Knife-piercing pains in my stomach,

Nausea,

Retching,

Lethargy.

This is a life worth escaping.

In the tub,

As the hot water showers and engulfs my body,

I close my eyes and imagine myself

Somewhere else--far away,

Far away from my reality.

I'm floating like a stray leaf down a river

Where the sunlight glistens on the surface

Near trees on the shore,

And where the trees dance to the rhythms of the wind.

Salmon sweep up shore

To lay her eggs in the spawning ground

While a father gives his son his first fishing lesson.

The running water

Sounds like a flowing river to me now.

I can even hear when the water

Hits against those stubborn rocks.

Swish, swish, the water sings to me.

Swish, swish, what a relaxing melody,

Swish, swish, someone please save me.

Where Are My Frequent Flyer Miles?

I am what doctors and nurses call a frequent flyer.  A frequent flyer in this context is a person who frequents the hospital as a patient more than a few times a year.  I go to the hospital so often that the nurses and doctors actually know me by my name and likewise.  On average, I would go to the hospital two to three times a month because of severe nausea, vomiting, and pain, not to mention, extreme dehydration.  It is not a choice of mine to go to the hospital so often, but I suffer from two rare, chronic disorders called Cyclic Vomiting Syndrome (CVS) and Abdominal Migraines. Symptoms include the following: excruciating stomach pain that radiates to my whole body, debilitating nausea, extreme fatigue, weakness, lethargy, and uncontrollable and forceful vomiting.

At any given episode, I would vomit every fifteen minutes, which would result in becoming severely weak and dehydrated. Other symptoms include: profound sensitivity to light, noise, and smell. If my nurse left to smoke, to drink coffee, or to eat food, I would smell it just as a pregnant woman would be able to do.  I also wear an eye mask to shield me from any light.  Not all CVS sufferers experience debilitating pain, but for those who have abdominal pain such as myself, we are also diagnosed with abdominal migraines. The relationship between these two disorders is as if they are married to each other without the option to divorce.  With that said, my abdominal migraines always trigger my CVS episodes, and I never have one without the other.

Only a handful of doctors are aware that these disorders exist.  Because of the rarity of my disorder, diagnosis is usually difficult and rather prolonged.  Most of the time, patients who have CVS have to go through a whole battery of tests, and have to see several specialists before a correct diagnosis is made.  In fact, CVS is so rare that it doesn’t even have a medical code, so it is no wonder why doctors aren’t knowledgeable enough to make a quick and accurate diagnosis. (I will note, however, that sometime in 2013, a medical code would finally be used for CVS).

In addition, nausea and vomiting, along with stomach pain can be caused by a myriad of other diseases.  With that said, CVS is a diagnosis of exclusion so once all the obvious disorders are ruled out, it is then when a diagnosis can be made only by the knowledgeable doctor.  Other doctors with less experience will most likely misdiagnosis the patient with other disorders before the right diagnosis is made.  The average time it takes a medical professional to correctly diagnose a CVS patient is an average of eight years.  Unfortunately, this prolonged delay will not only cost the patient financially, but also it will more importantly cost them emotionally.  I was lucky because I was diagnosed in less than a year of my onset, and I am forever grateful for the medical student who figured it out at Montefiore Hospital in the Bronx.  I believe that I would not have been diagnosed as quick if I relied on the hospitals in CT to diagnose me. At St. Mary’s Hospital in Waterbury, I’m the only patient with CVS, and in this case, I rather not be the only one.

Because my illness is unknown to most of the medical community, I fall victim to becoming a real life guinea pig because treatment is usually not evidence-based, but rather trial and error.  In addition, I also fall victim to polypharmacy, which is the use of multiple medications.  More specifically, this word is used to describe when too many medications are being used that is either clinically warranted or not.  In either case, there are too many pills to take, which then result in higher incidences of adverse drug reactions or drug-drug interactions. Actually, if you take more than three different medications, the likelihood of having an adverse side effect or drug-drug interaction is in the eighty percentile.

I had my share of adverse side effects and drug-drug interactions as I am on a plethora of medications.  For example, when I started taking Topamax, I felt great for three weeks, and had no symptoms so I started to look for jobs to go back to work.  However, that was short-lived.  I ended feeling really sick and started to have violent seizures one day so I went to the ER.  After my blood work came in, I was immediately admitted to the hospital for renal acidosis, and I was told that I developed kidney stones from Topamax. Because of that, cessation of the Topamax was immediate.

In addition to becoming a human guinea pig with too many medications to take, medical professionals’ lack of knowledge leaves a lot of room for healthcare professionals to be inconsistent and fragmented, uncoordinated and, surprisingly, abusive.  It is sad to say that I have had too many instances where I felt as though my treatment was compromised because of inconsistencies and lack of coordination between medical professionals involved in my care.  Because of these problems, my health care is almost always fragmented and counter-productive.

My experience as one who has a chronic, rare disorder in this healthcare system has taught me to expect these inconsistencies and fragmentations.  After all, how can a doctor help me if they have never heard of my illness? Sadly enough, when doctors have exhausted all his theories on how to manage my disorder, they then lose interest in helping me and become unavailable and frustrated.  It is the frustration that usually causes doctors to become abusive.  Subsequently, doctors give up on me and discharge me of their care, and pass me along like a hand-me down, and this becomes a vicious cycle that I can hardly escape.  This alone makes it difficult to get adequate and consistent health care.

Because doctors pass me around, it is no wonder why my treatment is fragmented and uncoordinated.  After all, a Gastroenterologist would not treat me as a Neurologist or Naturopathic doctor would.  Based on their specialty, each doctor would approach my disorder using different medications, modalities and schools of learning.

Furthermore, I see many specialists for my disorder, and each specialist wants me to follow their specific care plan so I often end up feeling more confused and faithless in my journey for becoming healthy.  In fact, often times my doctors would contradict one another.  For example, one doctor would tell me not to treat my pain with a certain medication while my other doctor will tell me that the only way to treat my pain effectively is to treat me with the same medication that the other doctor was adamant about me not taking.  Instead of my doctors trying to work as a team to coordinate my care, they tend to ignore the other doctor's recommendation leaving my treatment uncoordinated and inconsistent, as well as, leaving me feeling uneasy and confused about how to best manage my disorder.

I realized in the end that I am the one in the control seat, and I need to be my own best advocate.  That means becoming an expert on my disorder, and reaching out to specialists, organizations, and anyone that may help me manage my illness without making me feel powerless.  St. Mary’s Hospital knows me because I made sure they got to know me.  I wanted, in a weird way, to build rapport with them so that they can see how sick I really am, and that eliminates the doctors from believing that I am a drug-seeker.  After all, I do ask for the medications that I researched that helps aborts episodes.  So, in a way, I can be labeled by some close-minded doctors as a drug- seeker only because I know what medications will make me feel better.  I also make them follow empirical guidelines for the treatment and management of my CVS/abdominal migraines. I also must note that having a caring doctor who believes in you and well-being is paramount in dealing with a rare disorder, because as much as you are your own best advocate, some doctors will listen to another doctor than you, the patient.  I am lucky to have a few doctors I can trust.

If I have to go to the ER, I go with a prescription from my doctor stating what medications I need, as well as, bring my own note that I wrote that includes the following: my name, age, diagnosis, complaint, medications, allergies, insurance information, and lastly, a brief medical history.  I can’t tell you how helpful and life saving it is just to have that paperwork on board when you are at the E.R. 

Living with CVS is not easy at all, and I would never wish this on anyone because this is a life not worth living; however, if you do have CVS, you just have to try to manage your life the best way you know how.  CVS made me see life differently and the most important lesson to learn is to stop comparing your life with other people’s lives and to love yourself as you are. You have to accept that this is your life for right now, because you never know what can happen in the future.  I learned to enjoy the simpler things in life.  For example, a wonderful day for me would be a sunny day where I am not in pain or vomiting.  That is a successful day for me, and it brings me much happiness.  I have learned to not worry over little things and not to take things too seriously. Otherwise, it will most likely bring on an episode.  My life with CVS is not easy and it is full of struggles and setbacks, but this is the only life I know, and I wouldn’t trade it for the world.