I had a vague notion that I was different from other children growing up, laughing would give me migraines and when I had them they will not cease until after I slept. I was about 6 y/o then. Then when I was about 9 y/o, I started to have pain and numbness in my right arm. I accepted the migraines as an everyday ordeal. I just remember that once in a while, I would get so frustrated that I would lock myself in my room and cried. Because my siblings and I played tennis, Iassociated the arm pain from playing tennis. We all thought it was tennis elbow. Our family doctor prescribed pain medications for the head aches which almost never worked and in later years, received cortisone shots for the arm pain and was referred to an Ophthalmologist for the migraine headaches and was prescribed reading glasses, albeit those eyeglasses ended up just collecting dust on top of my dresser.
I started school at age four. At age six, I was accelerated to first grade. Although I was too shy, I was very competitive academically, I always wanted to be among the top ten in class. I graduated elementary with honors. Apparently, for some reason that I didn't know, it became more difficult to study when I was a senior in HS especially when it comes to memorization. I still made it, graduating with honors in high school.
The issue of memory and cognition wasn't so pronounced that I was able to set it aside. I was so elated and excited to move on to college. With difficulty, I passed freshman year with flying colors. My mother was happy. I have no recollection how I made it in junior year. When I was in my third year, with my practical subjects I did very well but not the ones where I had to memorize like Anatomy. I was failing! The regular afternoon migraines made things even more miserable. I totally blacked out during exams, I don't remember any of the terms I memorized. Then, there was the constant pain in my lower abdomen. That semester, I failed one class and just realized that from being sick now and then, I missed three days of school. I was devastated and didn’t know how to tell my parents. Ironically, at the College of the Holy Spirit, a private Catholic college for girls that I attended, if you missed three days of school in one semester, you were kicked out! I was a failure and didn't know how to tell anybody.
The migraines came on everyday in the afternoon, and then I had frequent sore throats. One day I was rushed to the hospital for chest pain. I was diagnosed with a heart murmur. I was told that having many sore throats can cause heart problems. I had sore throats almost everyday for many months for no reason.
I enrolled at a different school. I went to La Consolacion College, another girl’s school but it would
have to be short lived because I was having the same problems. Cognitive and memory had deteriorated. I couldn't take any exams, I blacked out.
I was so lost. Knowing my parents, especially my mom, I couldn't tell them what was happening. I could just imagine how she would react, hysterical and mad like with anything.
If I were to be the only child in the family that will not finish school, I had to do something better for my life. Unfortunately, that wasn't the case. Because I desperately wanted to move out of the house I was living in at that time, I moved in with a boyfriend. Things were fine in the beginning but it didn't
last long. The guy was bipolar. To make matters worse, he was also physically abusive.
Here, I would have to skip a severely traumatizing part of my life. Just the thought of it now is
giving me chest pains and causing me difficulty breathing. I would never want to talk about it ever.
I picked up the pieces and started anew. I went to work for his family import/export business abroad. They had a branch in Guam and I would be working there. I had never been happy and proud of my independence. It was a great feeling. Not long after, I met a very attractive guy whom I would fall for. A year after, we were married and then we had a child. Life is good. Our son received so much
attention from all the family members, especially his Mom. But, life is never all roses. I received a
letter from the immigration that my visa will expire and I need to exit. It had to be done. My father came to pick me and my son up. The plan was for my husband to process the papers for my visa so we could come back.
We had adjusted pretty quickly with life back home. I didn't have any health issues except for my eyes becoming very sensitive. I couldn't wear perfume or any make up. If I did, my eyes would turn red and it triggered the migraines. In no time, I was working as a manager for an insurance company. My father was proud. I received regular phone calls from Guam for about a year. After that, I will
never hear from Richelle ( father of my child).
My mom and my sister who were living in So. San Francisco at that time were worried. My sister went to Guam and urged Richelle to process our papers. With my sisters help, he finally did.
I wasn't so excited about moving to the US. The thought of leaving the life I had established was
brutal and burdensome. I knew that life in the U.S. would be a challenge, besides, I had to start all
over again. At home, I had all the help I could get. There, I could afford a nanny for my son and a maid that did household chores. But for my son, I was willing to do it. My father advised me not to resign from my job. We talked about maybe just getting my visa and then go back home.
The day we landed in Guam, I was met by the news that Richelle's live in girlfriend, just had her second baby the day before. I was devastated and didn't say a word about it. I just knew for a fact that I couldn't live with that. I had to leave that environment. We left Guam in two days. In Daly City later, I received a letter from Richelle asking for forgiveness and telling me that he should be with me. I told him I forgave him but I didn't have to be with him. We would never hear from him again. Not one offer to help our son.
Here I was again. It was year 1994. I needed to start somewhere. I started applying for jobs. Everywhere I went, they required local experience. My sister urged me to get any job so that I can pay rent for the room we were in. I worked as a waitress at night and went back to school again, determined to become a lawyer like my father as I always had wanted. But, the same thing happened, I had A’s in my practical classes but where it needed memorization, my professor looked at me like I was the most stupid student in school. There were quite a number of ER visits for me in the next few years. Stomach bloating started in 1995. I consulted with a GP who told me it was allergy to milk and later diagnosed me with IBS. The pain continued to get worse and I tried to gain help from a good GI who did extensive tests like endoscopy, sygmoidoscopy and so on, but to no avail. Then another symptom started. It was difficulty breathing and constant pain in my upper left back just below my shoulders. In mid 1998 the stomach pain became more frequent and excruciating, they were unbearable! It was almost once a week that I had to leave work because of pain. I was called a
hypochondriac by co-workers. I used to go to Kaiser and it was unfortunate that my doctors were just treating the pain but not interested to find what the cause was. Their diagnosis was IBS. I urged my doc to do a Laparoscope; I knew something was happening inside my belly that needs to be found. I had to fight with him in order to find out the cause. It didn’t happen overnight but he finally agreed and found out that my uterus, for unknown reasons, was covered with spaghetti-like adhesions. They scraped all the adhesions and I was relieved, but it was to be short lived. After just a few months the pain was back! Then I realized I couldn't sit, after a few minutes of sitting, my stomach got bloated like I was pregnant,then I would get nauseated. I took another disability leave. By this time, I had been to many different doctors. Lucky enough that I had a good health insurance,I left Kaiser. With Blue Cross PPO, I had a choice of which doctor or hospital to go to.
have to be short lived because I was having the same problems. Cognitive and memory had deteriorated. I couldn't take any exams, I blacked out.
I was so lost. Knowing my parents, especially my mom, I couldn't tell them what was happening. I could just imagine how she would react, hysterical and mad like with anything.
If I were to be the only child in the family that will not finish school, I had to do something better for my life. Unfortunately, that wasn't the case. Because I desperately wanted to move out of the house I was living in at that time, I moved in with a boyfriend. Things were fine in the beginning but it didn't
last long. The guy was bipolar. To make matters worse, he was also physically abusive.
Here, I would have to skip a severely traumatizing part of my life. Just the thought of it now is
giving me chest pains and causing me difficulty breathing. I would never want to talk about it ever.
I picked up the pieces and started anew. I went to work for his family import/export business abroad. They had a branch in Guam and I would be working there. I had never been happy and proud of my independence. It was a great feeling. Not long after, I met a very attractive guy whom I would fall for. A year after, we were married and then we had a child. Life is good. Our son received so much
attention from all the family members, especially his Mom. But, life is never all roses. I received a
letter from the immigration that my visa will expire and I need to exit. It had to be done. My father came to pick me and my son up. The plan was for my husband to process the papers for my visa so we could come back.
We had adjusted pretty quickly with life back home. I didn't have any health issues except for my eyes becoming very sensitive. I couldn't wear perfume or any make up. If I did, my eyes would turn red and it triggered the migraines. In no time, I was working as a manager for an insurance company. My father was proud. I received regular phone calls from Guam for about a year. After that, I will
never hear from Richelle ( father of my child).
My mom and my sister who were living in So. San Francisco at that time were worried. My sister went to Guam and urged Richelle to process our papers. With my sisters help, he finally did.
I wasn't so excited about moving to the US. The thought of leaving the life I had established was
brutal and burdensome. I knew that life in the U.S. would be a challenge, besides, I had to start all
over again. At home, I had all the help I could get. There, I could afford a nanny for my son and a maid that did household chores. But for my son, I was willing to do it. My father advised me not to resign from my job. We talked about maybe just getting my visa and then go back home.
The day we landed in Guam, I was met by the news that Richelle's live in girlfriend, just had her second baby the day before. I was devastated and didn't say a word about it. I just knew for a fact that I couldn't live with that. I had to leave that environment. We left Guam in two days. In Daly City later, I received a letter from Richelle asking for forgiveness and telling me that he should be with me. I told him I forgave him but I didn't have to be with him. We would never hear from him again. Not one offer to help our son.
Here I was again. It was year 1994. I needed to start somewhere. I started applying for jobs. Everywhere I went, they required local experience. My sister urged me to get any job so that I can pay rent for the room we were in. I worked as a waitress at night and went back to school again, determined to become a lawyer like my father as I always had wanted. But, the same thing happened, I had A’s in my practical classes but where it needed memorization, my professor looked at me like I was the most stupid student in school. There were quite a number of ER visits for me in the next few years. Stomach bloating started in 1995. I consulted with a GP who told me it was allergy to milk and later diagnosed me with IBS. The pain continued to get worse and I tried to gain help from a good GI who did extensive tests like endoscopy, sygmoidoscopy and so on, but to no avail. Then another symptom started. It was difficulty breathing and constant pain in my upper left back just below my shoulders. In mid 1998 the stomach pain became more frequent and excruciating, they were unbearable! It was almost once a week that I had to leave work because of pain. I was called a
hypochondriac by co-workers. I used to go to Kaiser and it was unfortunate that my doctors were just treating the pain but not interested to find what the cause was. Their diagnosis was IBS. I urged my doc to do a Laparoscope; I knew something was happening inside my belly that needs to be found. I had to fight with him in order to find out the cause. It didn’t happen overnight but he finally agreed and found out that my uterus, for unknown reasons, was covered with spaghetti-like adhesions. They scraped all the adhesions and I was relieved, but it was to be short lived. After just a few months the pain was back! Then I realized I couldn't sit, after a few minutes of sitting, my stomach got bloated like I was pregnant,then I would get nauseated. I took another disability leave. By this time, I had been to many different doctors. Lucky enough that I had a good health insurance,I left Kaiser. With Blue Cross PPO, I had a choice of which doctor or hospital to go to.
I lived with the pain for another year. Almost everyday, I would go to our backyard to cry because of
excruciating pain. In 1999, my OBGYN and I decided it was time for hysterectomy. The pain never
went away so the culprit must be the uterus, we thought. After surgery while I was in the recovery room when something went very wrong, suddenly I was gasping out of oxygen, like I was drowning. I could see my gynecologist in his shorts rushing to my rescue. I thought I died that evening. He told
me later, it must have been a reaction from anesthesia. The next morning at the hospital, I felt good. I wanted to groom before my doctor came and did his rounds, thinking that if he saw me doing well, I could be sent home. To my dismay, after looking at my incision, he said, I had an infection. Right then the suture had to be removed. He scraped the blood that accumulated around the suture. It was very painful but I remained calm. He called me, stoic. I went home a day after and while recuperating in bed, I felt my back to my buttocks was numb, like paralyzed! I was full of fear. My mother in law
said that maybe I was lying down too much. She also thought I should be taken cared of by my mother, so I was taken to Daly City. While I continued to recuperate at my Mom’s, the back-buttocks pain was getting worse. I felt paralyzed while I lay in bed. This time it went down to my legs. It felt like pulling down all the nerves.
excruciating pain. In 1999, my OBGYN and I decided it was time for hysterectomy. The pain never
went away so the culprit must be the uterus, we thought. After surgery while I was in the recovery room when something went very wrong, suddenly I was gasping out of oxygen, like I was drowning. I could see my gynecologist in his shorts rushing to my rescue. I thought I died that evening. He told
me later, it must have been a reaction from anesthesia. The next morning at the hospital, I felt good. I wanted to groom before my doctor came and did his rounds, thinking that if he saw me doing well, I could be sent home. To my dismay, after looking at my incision, he said, I had an infection. Right then the suture had to be removed. He scraped the blood that accumulated around the suture. It was very painful but I remained calm. He called me, stoic. I went home a day after and while recuperating in bed, I felt my back to my buttocks was numb, like paralyzed! I was full of fear. My mother in law
said that maybe I was lying down too much. She also thought I should be taken cared of by my mother, so I was taken to Daly City. While I continued to recuperate at my Mom’s, the back-buttocks pain was getting worse. I felt paralyzed while I lay in bed. This time it went down to my legs. It felt like pulling down all the nerves.
After seeing a couple of orthopedic surgeons who couldn't find anything, I went to see a well known OBGYN at Seton Hospital in Daly City who sent me to UC San Francisco Pain Management Clinic for pain of unknown etiology. I was given lumbar epidurals and I was prescribed Neurontin for the first time.
Things got better after the lumbar epidurals and Neurontin. It was almost like the diagnosis wasn’t important anymore; you deal with so much pain that when there was a relief you were just elated and just want to move on with life!!
After a few months, I was ready to go back to work, in fact, so excited. But to my astonishment, I still couldn't sit. It was very frustrating, it made me sad. I didn’t want to loose the job I had, working for Waste Management at the accounting department. If I sat, it felt like sitting on a bowling ball, hard on my tailbone and my buttocks felt like it was going to break into pieces and then my stomach would
start to bloat after a few minutes which caused me to feel nauseous. I had severe pain on the left side
of my stomach that would shoot to my back. It was so weird and unbelievable but I had pictures taken during those times when my stomach got big. As painful as it was, I had to leave my office job.
Then there were more ER visits for me. A lot of times doctors would dismiss my claim of having
severe lower left quadrant stomach pain that would include my back because there was nothing there, they said. Not knowing at that time that it was that muscle itself that was being attacked by SM.
start to bloat after a few minutes which caused me to feel nauseous. I had severe pain on the left side
of my stomach that would shoot to my back. It was so weird and unbelievable but I had pictures taken during those times when my stomach got big. As painful as it was, I had to leave my office job.
Then there were more ER visits for me. A lot of times doctors would dismiss my claim of having
severe lower left quadrant stomach pain that would include my back because there was nothing there, they said. Not knowing at that time that it was that muscle itself that was being attacked by SM.
My sisters were disappointed when I took a job as a grocery clerk. It hurt their pride that I took that job. But to me, I needed to live and besides, it was a job that didn’t require sitting!
In 2001 we sold our house in the Bay Area and moved to Sacramento. Although my son and I weren't so happy about the move, we both adjusted well, him with new friends from church and school and me, with the fact that the clubhouse is a walk from our house; I had always loved to exercise and I was happy attending yoga and especially the body sculpting classes. I met friends from church and I enjoyed their company.
A few months after the move I had to establish myself with a new PCP because of a new symptom I had, difficulty swallowing. Besides, the headaches were even worse making my head feel like it was going to explode each time I laughed, got excited, nervous etc. Also, I could just feel the pressure in my eyes, and in my ears. My eyes felt like they were being pulled out of their socket. The stomach pain never went away but it's more tolerable although the bloating could be annoying, I dealt with it with a stride. All the time my stomach felt like tires filled with too much air. The flat stomach that I had always been happy for was never flat anymore!!lol There were times when I sat inside my closet and cried because none of my clothes would fit. I also made an appointment to with an Ophthalmologist. Now I was really a hypochondriac, I thought and laughed.There was definitely something very wrong with me.
First doctor I went to see diagnosed me with IBS, I thought he wasn’t good enough, let me move on to the next one. The next doctor asked me a very funny question. He asked me how my husband had been treating me, it was a silly question but I already knew what he was going to say next. That I was suffering from depression. I was right, but I told him I had no time to be depressed, but if he thought so, I gave him the benefit of the doubt. Maybe I was depressed because of not knowing what was going on with me!
I continued to look for a doctor that can give me a more sensible diagnosis. But my condition was getting intense each day. The difficulty swallowing was getting so bad I tried to avoid the problem by eating soft foods like yogurt, bananas and instant oatmeal with milk. These composed of my meal everyday. People laughed at me, at work they said I was eating horse food (oatmeal) lol. I was referred to another GI, I thought it might benefit me to try another opinion. He told me I was having esophageal spasms of an unknown cause. It was another fiasco, his diagnosis, IBS! One day in August of 2002, my shift was almost over when I felt like a vegetable, I can't stand up, my legs, shoulders and arms were numb, co-workers took me to the break room and made me lie down. The next few days I stayed home, took a medical leave. One early morning, to my astonishment, I was awakened by extreme pain in my lower back down to my legs, they were heavy and numb! Those pains had been long gone and now they came back!! I will never forget the fear I felt. I started a thorough research of my ailment. I found this new doctor from Mercy Hospital who was so kind. Heordered all kinds of blood tests, checked me for Fibromyalgia, Lupus, etc. I continued to research about my situation. This time I couldn't swallow even a tinysolid food, I can't go anywhere without getting so fatigued and I had to walk with a cane since I had difficulty with my balance. With all the
symptoms I had, my research told me I might have MS or Lou Gehrig’s. I was scared. I asked my PCP to refer me to a Neurologist because I was sure I had a neurological disorder and basing it on my
experience, it was degenerative. He said he didn't agree with my idea, he can't see stomach problem having any connection to the leg and arm pain. I kept praying for the Lord to show me the doctor that can diagnose me. One day I had a bite of a banana and everything went dark, I was choking!! Can't
fully remember how I got to the ER, but I managed to drive myself to the emergency room even bringing my own comforter with me thinking I won't go home until I was told what was wrong with me. I will never forget that day, a few minutes after I told the doctor what my symptoms were, I found myself surrounded by four attendants including the doctor, a nurse pricking my toes for blood, another nurse taking blood sample from my arm, etc. Doctor ordered a CT, which turned out normal and he said he was checking me for MS but he needed me to have an MRI of my head and spine which he couldn’t do at that point. I cried. He ordered an MRI for the next day.
symptoms I had, my research told me I might have MS or Lou Gehrig’s. I was scared. I asked my PCP to refer me to a Neurologist because I was sure I had a neurological disorder and basing it on my
experience, it was degenerative. He said he didn't agree with my idea, he can't see stomach problem having any connection to the leg and arm pain. I kept praying for the Lord to show me the doctor that can diagnose me. One day I had a bite of a banana and everything went dark, I was choking!! Can't
fully remember how I got to the ER, but I managed to drive myself to the emergency room even bringing my own comforter with me thinking I won't go home until I was told what was wrong with me. I will never forget that day, a few minutes after I told the doctor what my symptoms were, I found myself surrounded by four attendants including the doctor, a nurse pricking my toes for blood, another nurse taking blood sample from my arm, etc. Doctor ordered a CT, which turned out normal and he said he was checking me for MS but he needed me to have an MRI of my head and spine which he couldn’t do at that point. I cried. He ordered an MRI for the next day.
God answered my prayer, after decades of pain and suffering, we received a phone call from the hospital the next day, urging us to be there immediately. I was diagnosed w/ Arnold Chiari Malformation with Syringomyelia, in October of 2002. I even got excited that now my pain has a name. Not realizing how serious of a condition I was in and oblivious of the misery that such an
illness can bring.
illness can bring.
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