Hi to everyone on this forum. I was browsing this forum for over a week and it was relieving to see so many familiar thoughts in text. This post will encompass an introduction and financial questions, so if another board is more appropriate, a moderator can move it. I chose this section because it's so general.
I was born in Ukraine on March 12. From what my mother told me, I had exceptional health initially. My age was about 12 months when we moved to a cold apartment. I began to show symptoms of illness. It started when my parents took me to a doctor who treated me with antibiotics, resulting in a severe reaction (non-stop crying, entire mucosa becoming red, etc.) The following day, I was (orally) given an increasing dosage of a diuretic drug. This led to much more problems especially in GI tract, where many of my current symptoms take place.
My family moved to NY late December 1997. There were many doctor visits afterwards, where I had different antibiotics, drugs, vaccines, etc. forced on me, obviously crippling me further. I exhibited obvious adverse reactions to their venom, and the absurd responses I received included: "It's a coincidence, antibiotics can't cause this!" or even "This is impossible, he should see a psychiatrist." The last time I was directly attacked by the pharmaceutical industry was probably around age 7, taking another drug would very likely destroy my nervous system.
For as long as I remember, my life has been a never ending hell where the magnitude of the symptoms varied. My nervous system is wrecked. The pain is the worst, almost every part of my body brings has its own pain including head, stomach, teeth, legs, intestines, eyes.... The most intense is on the sides of my head, becoming very severe on different days with pressure and throbbing. Most regular activities are difficult for me - breathing, sleeping, speaking, walking, eating, moving thinking. Either because of fatigue or the movement will aggravate the pain further. All days and nights are painful and exhausting in every way imaginable.
My body is hypersensitive to all environmental factors with cold temperatures and drafts being the most common trigger. I instantly feel a sore throat, mucus in my throat, weakening, etc. from low temperatures. Drafts are significantly worse than wind. Continuing in this rotten, creaky, pre-WWII building since 2002 doesn't help. I am always tormented by drafts, the windows are very poor and let everything through, we struggle to tape up the slits etc. but it doesn't help. There is also an increasing mold infestation, a hurricane last year soaked through the windows and rotted them thoroughly. If I approach them, I feel a toxic odor that induces dizziness. Winter takes a massive toll on me with brutally cold weather and diseases.
I have to be very careful with my diet. All chemicals, artificial ingredients, colors, are definitely off. Anything sour, cold, hot, scratchy, capable of causing mechanical (chips, nuts) or chemical damage (acidic, artificial flavors) is also dangerous to ingest. The symptoms become visible in my mouth, and begin to effect my whole body. Even a mildly acidic fruit, the surface of my tongue will be visibly burned off. Eating the wrong thing instantly changes the feeling of my entire body.
My mind is also never at peace. Under a cloud of pain and brainfog, thinking is difficult. If the brainfog wasn't enough, I also have OCD and anxiety forcing me to repeat physical and/or mental rituals every second of the day, flooding my mind with horrific thoughts or images.
My symptoms spiked in severity at different times in my life. School was obviously a big problem throughout my life, where I missed many days. Sitting in a crude painful seat while being exposed to drafts, restlessness, etc. was utter torture. School officials were unhappy that I couldn't always attend school or incapable of following their orders like a dog. In high school, I was able to stay on average grades of 85-90% in the first 2 years.
During my junior year, the symptoms rose in severity. I began having diarrhea every day (whereas I was constipated all my life). The worsening of IBS was the most obvious change, but every aspect of me was crippled further. Life became much worse as the pain, fatigue, dehydration etc. increased. The ability to digest important foods like potatoes and chicken was lost as well. I struggled to maintain a passing grade (65%). Failing and retaking several classes, I finally managed to pass this year and barely recieved a high school diploma. A huge contrast with other times, when I was capable of finishing multiple state exams in the 95-100% range.
My cognitive abilities are reduced dramatically, it is hard to think in the middle of so much pain. On days that I have the diarrhea, the headpain and fatigue intensify. Recently I had a few days where these symptoms slightly calmed down. I felt weak signs of confidence, even ambition despite the massive pain. Then the IBS-D returns, and I am drained of life once again. The decay of my underdeveloped teeth has accelerated considerably with half of my wisdom tooth is missing already and the other half progressively rotting.
When the IBS, headaches, etc. calm to a degree I feel a large amount of sorrow because of the of the ability of thinking more clearly. I start being more self aware of my potential, and where I would be if it wasn't this disease. I even begin to form small plans of getting some sort of college degree, I never got a chance to deal with or even put thought into any college business or applications in my last two years of school.
My mother and sister are in similar condition to me, with similar causes. While being sick for a long time, she was still able to perform activities like walking to the store regularly. Her blood iron levels became dangerously and had her admitted to a hospital. After being forced antibiotics, she became in much worse condition and was bedridden, her height even decreased noticeably. This happened two years ago. My father was always apathetic to this. Always choosing to ignore or deny what was happening to me, with predictable answers and tropes that I'm "Faking to avoid school.", threatening to send me to a psychiatrist, etc. It is one of the most disgusting examples of behavior I ever witnessed in a person.
Right now I am only a burden to my mother, I cannot work to provide funds or attend college. If I am to survive, I need an income. This is where I need suggestions and legal advice, I imagine the struggle to receive any form of welfare will be very difficult, and I honestly have no idea where to start. I hope to improve my condition soon, at least to where I was two years ago, I was in a lot of pain even then, but I had more reasonable cognitive power and physical strength, I would even be able to attain a low level college degree. Signing up for college is another area I need assistance in.
I spent part of this summer in San Diego. I am aware of its yearly mild climate, and moving there would be a blessing for me. Escaping from New York's brutal weather would be key if I hope to recover. If enough strength is gained attend college AND move to San Diego area, it would be ideal.
While me and my mother were living in mystery of what this condition was called, searching on the internet led to a conclusion of CFS and dysautonomia. Last May, I finally received a diagnosis for CFS from a specialist in Manhattan.
I always think of the easy way out, but weak signs of hope and motivation and the will to experiment with in diet kept me away from it, it is difficult to explain in words. I wish to recover my health from the destruction of medicine and see what having a real life is like. Although so far my suffering has been lifelong and I'm unaware of how a truly healthy being feels, I still believe I hold enough of an understanding of how the life of a healthy person is - lack of constant pain, energy to perform all tasks with ease, will to live, etc.
I was born in Ukraine on March 12. From what my mother told me, I had exceptional health initially. My age was about 12 months when we moved to a cold apartment. I began to show symptoms of illness. It started when my parents took me to a doctor who treated me with antibiotics, resulting in a severe reaction (non-stop crying, entire mucosa becoming red, etc.) The following day, I was (orally) given an increasing dosage of a diuretic drug. This led to much more problems especially in GI tract, where many of my current symptoms take place.
My family moved to NY late December 1997. There were many doctor visits afterwards, where I had different antibiotics, drugs, vaccines, etc. forced on me, obviously crippling me further. I exhibited obvious adverse reactions to their venom, and the absurd responses I received included: "It's a coincidence, antibiotics can't cause this!" or even "This is impossible, he should see a psychiatrist." The last time I was directly attacked by the pharmaceutical industry was probably around age 7, taking another drug would very likely destroy my nervous system.
For as long as I remember, my life has been a never ending hell where the magnitude of the symptoms varied. My nervous system is wrecked. The pain is the worst, almost every part of my body brings has its own pain including head, stomach, teeth, legs, intestines, eyes.... The most intense is on the sides of my head, becoming very severe on different days with pressure and throbbing. Most regular activities are difficult for me - breathing, sleeping, speaking, walking, eating, moving thinking. Either because of fatigue or the movement will aggravate the pain further. All days and nights are painful and exhausting in every way imaginable.
My body is hypersensitive to all environmental factors with cold temperatures and drafts being the most common trigger. I instantly feel a sore throat, mucus in my throat, weakening, etc. from low temperatures. Drafts are significantly worse than wind. Continuing in this rotten, creaky, pre-WWII building since 2002 doesn't help. I am always tormented by drafts, the windows are very poor and let everything through, we struggle to tape up the slits etc. but it doesn't help. There is also an increasing mold infestation, a hurricane last year soaked through the windows and rotted them thoroughly. If I approach them, I feel a toxic odor that induces dizziness. Winter takes a massive toll on me with brutally cold weather and diseases.
I have to be very careful with my diet. All chemicals, artificial ingredients, colors, are definitely off. Anything sour, cold, hot, scratchy, capable of causing mechanical (chips, nuts) or chemical damage (acidic, artificial flavors) is also dangerous to ingest. The symptoms become visible in my mouth, and begin to effect my whole body. Even a mildly acidic fruit, the surface of my tongue will be visibly burned off. Eating the wrong thing instantly changes the feeling of my entire body.
My mind is also never at peace. Under a cloud of pain and brainfog, thinking is difficult. If the brainfog wasn't enough, I also have OCD and anxiety forcing me to repeat physical and/or mental rituals every second of the day, flooding my mind with horrific thoughts or images.
My symptoms spiked in severity at different times in my life. School was obviously a big problem throughout my life, where I missed many days. Sitting in a crude painful seat while being exposed to drafts, restlessness, etc. was utter torture. School officials were unhappy that I couldn't always attend school or incapable of following their orders like a dog. In high school, I was able to stay on average grades of 85-90% in the first 2 years.
During my junior year, the symptoms rose in severity. I began having diarrhea every day (whereas I was constipated all my life). The worsening of IBS was the most obvious change, but every aspect of me was crippled further. Life became much worse as the pain, fatigue, dehydration etc. increased. The ability to digest important foods like potatoes and chicken was lost as well. I struggled to maintain a passing grade (65%). Failing and retaking several classes, I finally managed to pass this year and barely recieved a high school diploma. A huge contrast with other times, when I was capable of finishing multiple state exams in the 95-100% range.
My cognitive abilities are reduced dramatically, it is hard to think in the middle of so much pain. On days that I have the diarrhea, the headpain and fatigue intensify. Recently I had a few days where these symptoms slightly calmed down. I felt weak signs of confidence, even ambition despite the massive pain. Then the IBS-D returns, and I am drained of life once again. The decay of my underdeveloped teeth has accelerated considerably with half of my wisdom tooth is missing already and the other half progressively rotting.
When the IBS, headaches, etc. calm to a degree I feel a large amount of sorrow because of the of the ability of thinking more clearly. I start being more self aware of my potential, and where I would be if it wasn't this disease. I even begin to form small plans of getting some sort of college degree, I never got a chance to deal with or even put thought into any college business or applications in my last two years of school.
My mother and sister are in similar condition to me, with similar causes. While being sick for a long time, she was still able to perform activities like walking to the store regularly. Her blood iron levels became dangerously and had her admitted to a hospital. After being forced antibiotics, she became in much worse condition and was bedridden, her height even decreased noticeably. This happened two years ago. My father was always apathetic to this. Always choosing to ignore or deny what was happening to me, with predictable answers and tropes that I'm "Faking to avoid school.", threatening to send me to a psychiatrist, etc. It is one of the most disgusting examples of behavior I ever witnessed in a person.
Right now I am only a burden to my mother, I cannot work to provide funds or attend college. If I am to survive, I need an income. This is where I need suggestions and legal advice, I imagine the struggle to receive any form of welfare will be very difficult, and I honestly have no idea where to start. I hope to improve my condition soon, at least to where I was two years ago, I was in a lot of pain even then, but I had more reasonable cognitive power and physical strength, I would even be able to attain a low level college degree. Signing up for college is another area I need assistance in.
I spent part of this summer in San Diego. I am aware of its yearly mild climate, and moving there would be a blessing for me. Escaping from New York's brutal weather would be key if I hope to recover. If enough strength is gained attend college AND move to San Diego area, it would be ideal.
While me and my mother were living in mystery of what this condition was called, searching on the internet led to a conclusion of CFS and dysautonomia. Last May, I finally received a diagnosis for CFS from a specialist in Manhattan.
I always think of the easy way out, but weak signs of hope and motivation and the will to experiment with in diet kept me away from it, it is difficult to explain in words. I wish to recover my health from the destruction of medicine and see what having a real life is like. Although so far my suffering has been lifelong and I'm unaware of how a truly healthy being feels, I still believe I hold enough of an understanding of how the life of a healthy person is - lack of constant pain, energy to perform all tasks with ease, will to live, etc.
I wish you the best, hopefully you find some good treatments. Keep on fighting and don't be afraid to stop by here when you need a bit of support. There's always people on chat and posting on the forums. God bless you! <3
