College Series: My College Experience, Part One

Having a chronic illness in college is extremely tough especially if you are in the hospital or in the midst of an episode or flare-up and have a paper or exam that is due the next day.  I experienced that so much that I thought, jokingly, my syllabi were the best predictors for figuring out when I would get sick with my illnesses, Cyclic Vomiting Syndrome (CVS) and Abdominal Migraines (AM).  Both disorders are rare and are married to each other without the option to divorce.  

In other words, one illness triggers the other one and they always work together.  On top of that, during my freshman year, I contracted mononucleosis and that infection left me sick non-stop until the mono passed. Because of the mono, I was forced to drop two classes even though I was an A student.  At the rate that I was going my freshman year, missing more than fifty percent of classes, I never thought I would walk down Long Walk and graduate.  What a feeling of satisfaction I would feel if I managed to graduate, but the goal of graduating went into the realm of fantasy because I was always sick and missing tons of classes, which made me perpetually behind in my classes. And when I did catch up, I got sick again.  It was a vicious cycle for which I couldn’t escape.

According to DePaul University in Chicago, nearly 10% of college students come to college with a chronic illness.  I firmly believe that colleges, in general, have extreme difficulty accommodating chronically ill students because their accommodations have to be individualized based on their specific illnesses.  With that said, it is much more problematic to accommodate these students in a cookie cutter approach.  In addition, there are not a lot of support services available for chronically ill students, but more so for the disabled student with a learning disability or a paraplegic that will need the college to become wheelchair accessible.  However, for students with chronic illnesses, it is extremely difficult to accommodate them.  For instance, if you have abdominal migraines like myself, you need to have your own room where there is less foot traffic because when you do get sick, you will need a dark and quiet room to manage your flare up.  And if you have an illness that requires a special diet, you will do best in an apartment-style dorm, as you will most likely need to cook for yourself. If you are a freshman, the apartment-style dorm might not be an option because those dorms are usually for upperclassmen.  However, if you need that accommodation, you can illustrate your need and you might just get what you need per the Americans with Disabilities Act.

To give you a better understanding of my illnesses, Cyclic Vomiting Syndrome and Abdominal Migraines, I will give a brief description of their symptoms.  With that said, both of my illnesses are functional disorders, which are characterized by prolonged bouts of nausea, uncontrollable vomiting, and excruciating abdominal pain along with lethargy, seizures, pallor, menstruation, sensitivity to light, sound, touch, and smell.  There are many triggers that bring on an episode for me.   Lack of sleep, food allergies, alcohol, infections, and positive (excitement) and negative stress are some of the many triggers that bring on an episode.  

Episodes can last up to a few hours to a few weeks and even months.  I remember before I was diagnosed, I was sick for the whole summer, and I didn’t get better until I tried the medication, amitriptyline, which is a tricyclic antidepressant that is widely used for CVSers and migraine sufferers as prophylactic therapy.   However, the medication’s side effects, such as weight gain, hallucinations, blackouts, and a rapid heartbeat were too unbearable.  Luckily, there is another tricyclic antidepressant that had fewer side effects and subsequently, I traded the amitriptyline for nortriptyline and that helped me, but it didn’t eliminate my episodes altogether. 

In college, I would wake up every morning in unimaginable pain and with unrelenting nausea and then 15 minutes later, the uncontrollable vomiting began.  Because of that, I had to take whatever meds I needed to abort the episode followed by my much-needed hot baths and showers, also known as hydrotherapy.  For some reason, taking a scalding hot bath was the only time my suffering would be bearable and it allowed me to keep my medication down.  Please don’t mistake my need for compulsive hot baths as a symptom of cannabinoid hyperemesis (CHS).  I have been taking hot showers before I started using medicinal marijuana to alleviate my symptoms.

Sometimes I was successful at aborting the episode and other times, I was not.  When my intervention at home failed, I was forced to call Campus Safety to take me to the Emergency Room, which was only two or three minutes away from my college.  Unlike other college students without chronic illnesses and disabilities, my college years were spent being confined to my bed or tub with all lights off, waiting hours upon hours in the hospital emergency room, month after month, smoking medicinal marijuana, and missing tons of precious class time, social activities, and always playing catch up.  I barely had any time to hang out, hook up, or go to parties with my comrades because my illness was equivalent to having a full-time job.  My illness made me a prisoner in my own body and I felt as though I had no control in my life because I never knew when my illness would rear its ugly head.  There were many days I was plastered to my bed because after vomiting every 15 minutes, my energy was so drained that I felt as though I participated in a triathlon dehydrated.

The first round of the triathlon was the inability to digest anything, second came the knife-piercing pain with sensitivity to all of my senses, and third, extreme nausea and the uncontrollable vomiting.  I honestly think I spent more time in my bed than in class, but with my never-give-up attitude and tips I learned along the way, I successfully graduated from Trinity College.  Not a lot of healthy people can say that they graduated from a prestigious college with a 3.3 GPA so I am proud I finished college, despite my many hardships and setbacks.  I graduated because I was really dedicated and diligent about my studies, and the professors and the administration admired my tenacity so they helped me every step of the way.

I vividly remember the last days of college as though it were yesterday.  Those days were to be spent having fun during Senior Week, but for me, I was stuck in my room constantly vomiting, and the pain was unbearable.  I wanted to die.  Regardless of that, I still managed to finish my thesis by the grace of God, by the skin of my teeth, and by the support of my mother and my twin sister, Dena.  They were my cheerleaders, pushing me and motivating me to accomplish this insurmountable goal.  During that time, since I was constantly vomiting, I only weighed 88lbs.

Because my symptoms were non-stop those last few days, I would write a sentence or two while on my bed in the fetal position, and I was vomiting so much that I thought I was regurgitating my insides.  After all, I vomited a lot of blood.  When the pain became too unbearable, I would light up a joint, attempt to take abortive meds, and take a scalding hot bath.  I refused to go back to the hospital because I thought I was dying and before I died, I wanted to at least graduate or all my suffering would have been in vain.

All the sleepless nights, all the vomiting, nausea and pain, all the hospital visits, all the non-believers who made life more difficult for me, all of that was worth it to me because I was able to walk down the Long Walk and receive my diploma.  For most people who graduated college, it is an important milestone, but for me, to finish college was bar none one of the most difficult goals I ever accomplished and in retrospect, I don’t know how I did it.  While my college experience was difficult, I was still able to have some fun and make good friends along the way that helped me when I became ill.  While my college experience was difficult because of my chronic illnesses, I was successful because I thought smart and employed many tips that made graduating a reality, and also because my college fought with me every step of the way. 

All in all, chronically ill college students generally require strategies for finding the right balance.  They have to take into account important considerations concerning financial aid, health insurance, finding new doctors, working with disability services, and so forth.   The next few posts will offer tips and suggestions to consider when looking at colleges and during your college journey, and it is my hope that you will learn how to better manage your condition while attending college so that you do not sabotage yourself.  Trust me, if you can do that, you can deal with adversity in a healthy way.  Stay tuned to learn tips that ensure that graduation is a reality and not just a fantasy.

                                       Graduation Day 2006. What an amazing feeling that was!

The Elusive Process of SSA Disability Benefits

Because most adults with moderate to severe Cyclic Vomiting Syndrome (CVS) and Abdominal Migraines have a difficult time maintaining employment, it is to no surprise that we apply for disability benefits out of necessity.  However, because CVS is a digestive functional disorder, it is difficult to obtain Social Security Administration (SSA) disability benefits. That is because the SSA believes that digestive disorders should heal or become manageable within one year via medication or surgery; therefore, digestive disorders are one of the hardest types of disabilities to prove to the SSA.  Also, CVS and Abdominal Migraines are functional disorders, which means that even though our body is impaired and not functioning properly, under examination and tests, the body looks completely normal.  For example, when you have a headache, there is pain, but no tests will indicate any abnormalities with your brain.

It is clear that CVSers are already at a disadvantage because not only is our illness rare and misunderstood, but also our ailment is a digestive functional disorder.  Additionally, CVS is also classified as a neurological disorder, more specifically, a migraine variant.  As much as you and your doctor know that you need disability because of your high frequency and long duration of your episodes, it is the SSA that you will need to prove how sick or disable you are.  You will need to prove both how your illness or disability interferes with being gainfully employed, and how it negatively affects your life and the lives around you.

The first time I applied for SSA disability benefits, I was in college.  Because I spent my college career mainly going to the ER and always playing catch up, I felt as though it would be advantageous to apply for disability since my illness negatively impacted my ability to learn and to attend classes. In fact, I missed about fifty percent of my classes.  I decided not to use a lawyer because I was so convinced that it would be a no brainer since I spend most of my life being sick rather than being well.  I remember the day when I received my determination letter from the SSA.  It was a nice, sunny Spring day and because I was so ecstatic, I ran to my college's Health Center like an excited child running to an ice-cream truck.

However, my glee quickly turned into disappointment and burning frustration because they didn't approve me.  I felt my heart sink to the floor.  The reason why I didn't get approved was because they believed that I still could find “gainful employment” even though it was clear I had a debilitating illness.  Say what!  Are they really serious?  I almost could not contain my frustration and in response to the letter, I called the SSA sobbing and told them that they should find me a job or better yet have me work there so they can see how unreliable my illness makes me.

I wanted to appeal the SSA’s decision but my graduation was my priority and I am happy to say that I graduated with honors.  After that, the next goal was finding a job and, most of all, keeping it.  After all, the SSA deemed me healthy enough to work, and I thought that if I had the will to stay well, then, I wouldn’t need to file for disability again.  However, that was just wishful thinking at best.             

I received a part-time job from my alma mater but after a few months of presenting great work, I was asked to resign because I missed a lot of work being sick.  Since my alma mater worked with me so that I could graduate, I naively thought that they would work with me, but again, that was wishful thinking.  When they asked me to resign, that was when it hit me like a hammer to a nail; the world doesn't take kindly to sick people.  Sick and disabled people are considered taboo and a burden to society.  At work, we are considered a liability rather than an asset.  That is why we end up applying for disability because we learn that no employer wants to work with a sick or disabled employee over a healthy one. And they say discrimination in the workplace is not tolerated.  What a lie that is!  For instance, one of my bosses sent me an email stating how I should cut my losses and quit because she needs someone 100% healthy.  And yes, I took this matter up with Human Resources because she was discriminating against me based on my illness.

There are a lot of people that don't understand the process of applying for disability.  Just because you are sick a lot doesn't mean you will automatically obtain or qualify for SSA disability benefits.  When you apply for SSA disability for the first time, fifty to seventy-five percent of people automatically get denied.  In fact, when you are looking for a lawyer, he or she will advise you to apply on your own first and come after you are denied.  That’s because when you appeal, your odds are slightly better since fifty percent of people will get approved.  If you are really sick, it's your job to convince the SSA that you deserve and need SSA disability benefits with or without a lawyer.

Here is some helpful information in regards to applying for SSA disability benefits.  First of all, there are two programs for the SSA, the Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).  These programs are based on your age, your education, your employment and medical history, and your medical condition.  The main difference between the two is that SSDI is available to workers who have accumulated a sufficient number of work credits.  On the other hand, SSI is available to low-income individuals who have never worked or who have not earned enough work credits to quality for SSDI.  Additionally, SSI has nothing to do with work history, but mainly on financial need. You can receive both SSDI and SSI if your SSDI benefit is too low.  SSI is then used to make up the difference.  Also, your premium also depends on any other income you receive and what state you reside.  After you have applied, you should expect 30 days up to 12 months for the application to be processed.

If you are appealing the SSA's decision, collect your own medical records from all of your past and present doctors, and if you are a frequent flier to the hospital, go to the medical records office and ask them to give you a list of all the days you were in the hospital in addition to your medical records. Furthermore, I would suggest you go to your past employers and ask them to write a letter on your behalf detailing how much your illness limited you from completing the basic job descriptions.  In addition, contact your school, and have the administration write a letter detailing all the accommodations they made for you so that you could succeed.  Also, stay on top of the process and make sure everyone is doing his or her part.  Keep everything that is pertinent to your appeal and have the necessary information, such as:

·       Doctors names, email, and addresses

·       The date you became disabled

·       The dates of doctor visits

·       Test results, hospitalization dates 

·       Birth Certificate

·       Bank statements

·       Work history and resume

·       W-2 forms and current income

Sometimes people get denied from SSA disability because some doctors never hand in their paperwork, or they don’t do it in the time allotted.  That is why it is so important to gather your own records to ensure that scenario doesn't happen.  If you feel like it is necessary, get a reputable lawyer who specializes in Disability Law, both SSI and SSDI.  If you did try finding a lawyer, many clients run into law offices that only work with SSDI disability benefits.  While you may have a better chance winning your appeal with a lawyer, please do not leave all your faith in your lawyer. Rather, get as much information about SSA disability as possible.  Research it on the web, call agencies that offer help in applying for and appealing disability, go to the library and borrow as many books that will help you understand how to fill out the application correctly, and how to do an appeal, and everything that has to do with Social Security Disability and Medicare benefits.

I was awarded benefits in 2011 and I didn't use a lawyer.  Instead, I bought a book called Nolo's Guide to Social Security Disability.  Because I didn’t use a lawyer, I saved myself $6,000 of my disability back pay that only goes back 12 months prior to the date you applied.  That is called a contingency fee.  Moreover, other lawyers ask for a fee upfront for out-of-pocket expenses.   If you lose, however, the lawyer does not get paid, and I believe that is why they usually won't work with clients until they start the appeals process

The most important thing to know is that you must be prepared and stay on top of the process. Keep a track of your correspondence, names, dates, and times as a document.  If your medical providers fail to do their part, it will affect you negatively, because then, the SSA will appoint a SSA doctor who doesn't know you to determine your eligibility and that might work against you.  I would also like to note than when it comes to Medicare, it doesn't matter if you have SSI or SSDI.  When you are approved for either program, you will have to wait 24 months starting from the date of eligibility before getting Medicare benefits.  Once you are on Medicare, it covers only 80% of your medical expenses, and the patient is responsible for 20% of medical expenses.  Depending on your finances, some people look into supplemental coverage to take care of the 20% Medicare doesn't pay for while other people who lack the finances might qualify for government programs, such as Medicaid that will cover the 20% for which the patient is responsible.

In regards to CVSers and abdominal migraine sufferers, we tend to have other debilitating illnesses that we fail to highlight on our application.  Because CVS and abdominal migraines are not in my control, I have developed a bad case of anxiety, which is common for many sufferers.  Furthermore, when I applied again, I also added anxiety and depression to it.  

I suffered from these illnesses as a result of living with CVS and Abdominal Migraines but I was not diagnosed.  Because I was not diagnosed, SSA required me to see one of their state appointed psychologist to determine whether or not I had anxiety and depression.  After seeing their psychologist, I was diagnosed with anxiety, but not with depression.

When I re-applied, I filled out the application by myself without legal advice just as I did in college, but what I did differently was educate myself on SSA Disability and Medicare by finding pertinent books and agencies that provided the most comprehensive information on Social Security Disability. I sent my application out and three months later I was approved.  I called and asked SSA what I was approved for, and they replied that it was for both generalized digestive disorder and anxiety disorder. I am certain had I not used those resources, I would not have known how to correctly fill out the application and get what I deserved.

All in all, getting disability for CVS is very elusive and difficult, but it’s not impossible. Stay strong in your convictions and always fight for what you believe in no matter what.  Complaining about being denied disability will only add negativity in your life.  Instead, delete those negative thoughts and stay positive and motivated.  Then, look for an experienced lawyer to help you appeal the SSA’s decision.  At this point, having a lawyer will increase your chances of getting approved because the lawyer understands the system and knows exactly what moves are necessary to take to win. With that said, good luck on obtaining SSA disability, don’t give up, and be the CVS warrior we are all meant to be.

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.