Am I Insane?

In my almost two decade career as a professional patient™, I am often bombarded with so many questions about my health from medical providers and laypeople alike.  This is because both my illnesses, Abdominal Migraines and Cyclic Vomiting Syndrome (CVS) are rare and mysterious disorders that amuse people when they learn more about it. 

The usual questions I am asked often refer to each of my illness’s symptoms and how they manifest. They ask what it’s like suffering all the time, how I manage to go on with life despite my not-so-healthy life, and how my disorders affect all aspects of my life, and how do I manage to still be somewhat successful in my life even though I am chronically ill.  I don’t know why anyone wants to know what it’s like to suffer, because I will never wish this suffering on my worse enemy.   That question always gets me, but these questions, however intimate and annoying they may be, are questions I can answer.  However, the question that always takes me by surprise is the following question: 

If I have such horrifying and traumatizing experiences at the hospital I still continue to go to, why do I continue to come back over and over again? 

Honestly, this is not an easy question to answer.  From an outsider looking in and from hearing all my near-death survival stories from the hospital, I don’t blame anyone for asking this question.  Whenever I need to get the patient advocate or social workers at the hospital involved in my care, they always bring up this question, and I don’t really have a great answer for them other than to question them on why they are the ones asking that question. 

But to start answering that question, I guess it’s similar to an abused woman who goes back to her abusive husband.  A financially, mentally, and physically abused woman often goes back to her abuser because even though her fear for her life is real, her mindset is that she has nowhere else or has no one for which to go back.  This is usually the case as it is classic behavior for the abuser to isolate the woman so that he is the only one that she can turn to if anything happens.  He acts like her hero, her knight in shining armor in the beginning, but that is only to isolate his woman and this makes it that much harder for her to leave him.  She doesn’t know what else to do other than to go back to him, the familiar, the known than to leave him, which is unfamiliar and unknown to her.

For me, in many ways, my hospital relationship is like that of an abused woman and her abusive lover. If you knew anybody in an abusive relationship, people often have a hard time understanding why the woman continues to stay, and why she always blames herself for his actions.  Of course, the outsider sees nothing but red flags all over the place in this type of relationship, and the outsider then concludes that she is insane, and has been brainwashed into believing her abuser’s promises to change. This is what battered woman syndrome is and I think that I have battered patient syndrome.

In the same way that the outsider sees something very wrong with the relationship of an abused woman and why she continues to go back, so too are people who think the same thing about me because I continue to go back to the very hospital that almost killed me on several occasions.  People can’t understand why I continue to go back to St. Mary’s after all the negative and traumatizing things they have done to me.  In fact, I developed PTSD after years of hospital abuse, and my best explanation for sticking with this hospital is that I rather stick with the familiar than the unfamiliar just as the abused woman would stay with the life she knows and that’s being with her abusive lover.  However insane that may sound to the outsider, in my mind as in the abused woman's mind, it makes sense.  Maybe her abuser might change and become better and maybe St. Mary’s might change and be better to me too.

Also, I have been to other hospitals and I had similar negative experiences there, and some ERs didn’t know how to help me, or they thought I was drug seeking because I asked for specific medications as not to reinvent the wheel.  I know what medications will treat me, and hooray for me for being on top of my own healthcare.  However, the minute you start asking for medication and their dosages, doctors automatically assume that I am drug-seeking, which is not really the case.  If anything, I am relief-seeking.  

Today, if I were to go to another hospital, both that hospital and St. Mary's will label me as a drug seeker since I have been at St. Mary’s for so long.  They will question my sudden change in my healthcare options.  Actually, I believe St. Mary’s wants me to go to other hospitals so as to refuse me when I come back to them; then, St. Mary’s Hospital is free of treating me and my many complaints and demands. 

What people don’t understand is that there are no CVS specialists in the state of CT, and the doctor I have is affiliated with St. Mary’s Hospital, and since I worked with him for so long, he is well versed on CVS because of our relationship.  With that said, this is one valid reason why I go back to that hospital.  Another reason is that I have been going to that hospital for over 17 years, and I don’t want to step out the frying pan and into the fire, so I stick with the familiar, and I am completely fearful of venturing off into the unknown. Perhaps, I might have a better experience elsewhere, but I don’t want to give St. Mary’s Hospital any reason to reject me from their services, which I thought was illegal, but it happens, because it happened to me this past summer.

They say that insanity is doing the same thing over and over again and expecting different results, and if that is the case, I am most definitely insane.  I am often wrong in my positive attitude towards my relationship with this hospital as I am often yelled at and berated by the ER staff. I tell myself this is not “exceptional care for every patient every day” like St. Mary’s motto boasts. It’s more like unexceptional care for me every time I go. But I still go, so that must make me insane.

While thinking about writing this blog, I came to the realization that the definition of insanity is not really doing the same thing over and over again and expecting different results.  If it really were, I will claim to be insane.  Rather that quotation is a catchy saying with no truth or fact to it.  Once I realized that, I also realized that I am not insane for going back to the same hospital.  I understand that my relationship is one sided since the medical providers are the ones with the power and the patients are powerless.   

In fact, I believe this power-dynamic is natural to all hospitals.  As a chronically ill person, I understand that no matter how hard I fight or how empowered I am, the doctors and nurses are the ones who hold the power.  And they can also retaliate in many ways, like making you wait for your pain medication, or lie about you to your doctor.  So when I am in the hospital, I fight all the time for my rights, and hope that this hospitalization will be a little better than the last time, and that makes me content.  It gives me a reason to go back to the hospital because maybe I might have a positive experience.  However, I won’t know if I don’t go back.  So instead of thinking of myself as insane, I realize that the best word to describe me is perseverant.  That is the method to my madness--Perseverance.

To be perseverant means "one's steady persistence in a course of action in spite of difficulties, obstacles, or discouragement." With that said, my relationship with St. Mary's Hospital is not a relationship based on equality and mutuality, but I am hopeful because I need to believe that things will get better because that is what makes me get out of bed every morning.  My perseverance is what keeps me alive and what allows me to have faith and hope.

All in all, my relationship with St. Mary's is not one of the greatest relationships I have had, but to think that I might have a different and better outcome is what keeps me going.  To be perseverant suits me, it insulates and protects me, and it allows me to keep the hope and faith even though I am engulfed with negativity in my life. I don't need to be negative because negative things happen to me.  If I allow my negativity to rule my life, only more negativity will come.  Therefore, I must stay positive no matter what.  In the end, it is my perseverance that allows me to be positive. It is what gets me up every morning and encourages me to live my life the best way I know how. 

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.

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.

Sisters Expressing Our Loss of Being Twins through Poetry

In keeping with the theme of loss in my last post, I figured this would be a nice time to share two poems.  One poem was written by my talented and amazing twin sister, Dena, and the following one I wrote.  We both dedicated our poems to one another, and we both wrote about losing each other to my illness.

Dena and I both wrote about the time when I first started getting sick, and we still didn't know what was ailing me. For both of us, as well as, for my whole family, that was an extremely difficult and scary time.  I must emphasize that being sick and not knowing what’s wrong is one of the hardest things for which to cope.  Since I didn’t know what was making me sick, I didn’t know what to do to feel better.  Additionally, for my family, it killed them watching me suffer not knowing what to do or how to make me feel better. 

I remember one time I was curled up in my bed crying in agony, and I thought to myself how I wish I had a disease like diabetes.  At least, then my family and I would know exactly what to do and how to treat it.  To not know what’s wrong just makes everyone feel powerless and defeated by the illness.

Every year, at my alma mater, Westover School, we were required to write poems in hopes of making it into, The Lantern, a book that only the best poems and artwork got published into each year. At the end of the school year, the freshmen class is given lanterns that were not lit.  Then, they would walk in procession to a place on our campus called, Seven Sisters, and there we were greeted by the whole school. 

At Seven Sisters,  a bon fire blazed, and we were told that the bond fire represented unity, and when we got our lantern lit, we officially became a part of the Westover family. After that ceremony, we were directed to look into our mailboxes.  There, we’d find a maple sugar candy and a book called, The Lantern, which showcased the best of the best poems and artwork created by students.  Luckily, for both Dena and I, our poems made it into The Lantern, which meant that we would always be a part of Westover's history, and the love we have for each other would be displayed for all to see for many years to come.

So, without further ado, here are our poems.  Enjoy!

A Face Seen in the Hospital Window
For Dana

It is the third time this month that I'm in a hospital room
watching my twin sister curled up and crying
as if she were a little child left alone in a crowded supermarket.
Sitting on a thin-legged stool,
I'm reminded of the time when,
trying to look into a mirror, a fall
off my grandma's shaky stepladder
landed me in the hospital
for the one and only time in my life.  But
now my face is pressed against the freezing window,
and as I gaze at some girl who looks back
with the same lack of expression I have on my face,
I wonder if she's thinking what I'm thinking--
of days I'd switch outfits with my twin sister
to trick the older folks in a game of "who's who,"
or of that one time we threw all our toys
out the window because we thought
that we were big girls,
and I wonder if perhaps that other girl knows
how to strengthen the person whose clothes I'm still wearing.

Every Morning

For Dena

Her alarm beeps now

As I lie in my bed remembering those mornings

When my sister and I fought over

Who was going to get her turn in the bathroom first.

I recall looking in the mirror

That once captured our two distinct images

That amazingly resembled one,

And then each morning on the way to school

That pleasant old man, Pablo,

Tan as the bricks of the building he lived in,

Would wait by his doorstep just to greet us with his “hola gemelas,”

Two words we had to look in the Spanish dictionary

To discover it meant “hello twins.”

But this day is not that day,

When I lie in bed, waiting for the front door to slam,

Knowing that today she’ll leave me behind.

Now that we no longer fight for the bathroom,

Now that we take our turns, one at a time,

She sees only her reflection in the mirror,

And Pablo, he no longer looks for the twins

To bring him the comfort that one does not have to be alone.