Post by Twitch on Mar 31, 2015 23:52:25 GMT -5
Who hasn't wished to evolve the X-Gene and finally enroll famous School for the Gifted? Adventure, cute guys and girls, and the world at your fingertips.
In the real world, I've done more than my share of wishing. Around the age of 11, I started having pain in my leg joints and muscles. For a year, my family doctor and parents and I tried everything- we took X-rays; I stopped playing baseball; I wore knee braces; my parent push every vitamin possible - nothing worked. I ached all the time. If I was active the ached would later become sharp shooting pain. Scared it was Juvenile Rheumatoid Arthritis, we went to a specialist. She didn't find a neurological cause. This led her believe either it was Munchausen (I was faking for attention) or Munchausen by Proxy (my parents had faked a 'sick' child for sympathy/bragging rights.) Well, this doctor's interview with my mom cleared up the possible of proxy, so it had to be in my head.
Now, when you tell a ten-year old girl that her pain is all in her head, it messes with her. My mantra became 'quit being weak.' I exercised, stretched, and tried to push through the phantom pains. If I had made myself sick, I would cure myself. However, nothing worked. A few months later, Mom saw one of hidden grimaces and quietly asked, "Has it gotten any better?"
The words torn my soul as I replied, "No, it hasn't."
By the time I was 16, it still hadn't gone away. More of my body hurt and I'd also started getting migraines. My mental health had also declined - the stress of pushing through pain and self-doubt had developed into full anxiety and depression. It was all I could do to finish my schoolwork, and collapse into bed. To me, other people seemed to have superpowers. I wanted superpowers.
To cope I made up stories. I dreamed that the pain in my knuckle was my retractable claws coming in. My body ached in the morning because I was a secret agent; I fought in the night and had to have my memories wiped to kept my family safe. Reality sucked, so I retreated to other worlds.
Then reality broke, I simply couldn't manage college. It wasn't my intelligence (A's and B's in a Watchmaking and Mircotechnoloy Course), I was simply breaking down physical and emotionally. My days became a cycle of sleep, migrianes, and numbness. Sometimes couldn't tell if I was awake or having a dream about going to class. This was a far cry from the dreams of my childhood.
Fortunately, my parents had long decided that what I had was real. It was time to restart the hunt. They shouldered my medical bills and pushed me to seek Disability Benefits. We visited a different neurologist, an endocrinologist, therapists - it was a very frustrating time. A new cycle of office visits, complicated tests, expensive pills, horrible side affects, then back to the office. There was lots of jargon like fibromyalgia, Bio-feed back loop, and the hated, "We'll see want happens." I reentered college and burned out twice more (I now have over 88 credits towards a Engineering Degree.) It was a hellish overlay on daily life. However, finally in the year 2014, I got a real diagnose.
It wasn't JRA, or a problem with my brain or nerves, or a figment of my imagination. I was a bonafide mutant. An important gene on the very end of the D.N.A chain was different. This gene has a long name, Methylene tetrahydrofolate reductase, and produces an enzyme that turns folic acid into active folate.
So what does that mean? Well, Folic is basic man-made vitamin B. It's found in fortified foods and general suppliments (daily vitamin pills and energy drinks.) A normal person will convert the folic to folate and which will be used to fuel cell in the body. My enzyme is faulty and can't activate enough vitamin B to fully power my body. Skin, nerves, muscles, blood and brain all need folate to repair and grow. This explained the pain, the migraines, the fatigue, even my allergies. As I learned more, the world opened up for the first time in a decade. I wasn't lazy or crazy. I was truly sick! Good news!
Then came the better news. My condition was treatable. I simply needed to take folate and bypass the faulty enzyme.
It was like getting my delayed letter from Hogwarts, while building a lightsaber, inside the Tardis. My story could change. I am a mutant and I can live with it!
//////////////////////////////////////////////////////////
Now, why have I put something so personal on a forum for a webcomic? Internet friends aren't the same as face-to-face friends, and the reader can't truly know if I'm just spinning another well thought out tale (see back-story thread in MCCC.) So why put this on the world-wide web?
1) The MTHFR mutation
(seriously, that's the official abbreviation) is surprising common. In the U.S.A over 10% of the population have the mutation. However, the severity of the mutation - number and locality of changes - varies. The severity will affect the enzyme activation rate (some people can only active 90% of their folic, others it's down to 40%.) As doctors learn more about folic/folate's role, they have linked chronic conditions, heart disease, cancer, and even pregnancy complications to the MTHFR mutation. This is a BIG DEAL! Patients and Primary Care doctors should know about this!
2) As happy as I am (three months of folate and old friends said, 'You look great! What happened?'), it took over 10 years and a lot of trauma to get here. It still pisses me off that all those specialists were show up by a holistic/integrated medicine doctor who advertised on the radio. With the cost of also those M.R.I.s (had four) the two C.T.s, dozens of thyroid labs, pills and co-pays, my parents could have payed out-off pocket for the genetic labwork and given me a ten-year supply of folate. I've lost money, time, and several once-in-a-life-time chances, because I was so sick for so long. I DON'T want to see anyone else stuck in that medical rat-race.
If you have or know someone with a chronic illness, please check the following links. I know, I know - you/they are probably sick and tired about outside advise. However, isn't our mantra 'it might be worth a try?' Heck, after playing 'boom goes my brain!' with doctor prescribed pain meds, nerve modulators, hormone pills,and even valium, I felt this folate pill had an excellent risk/reward ratio. I was broken and now I feel alive. Why wouldn't I want to share the method?
Wiki Article on the MTHFR gene
Folic and MTHFR in Layman's Term, doctordoni.com/
Inheritablity of MTHFR www.counsyl.com (Outdated understanding of folic/folate, but good population statics.)
One of the Top sources on MTHFT, mthfr.net/
In the real world, I've done more than my share of wishing. Around the age of 11, I started having pain in my leg joints and muscles. For a year, my family doctor and parents and I tried everything- we took X-rays; I stopped playing baseball; I wore knee braces; my parent push every vitamin possible - nothing worked. I ached all the time. If I was active the ached would later become sharp shooting pain. Scared it was Juvenile Rheumatoid Arthritis, we went to a specialist. She didn't find a neurological cause. This led her believe either it was Munchausen (I was faking for attention) or Munchausen by Proxy (my parents had faked a 'sick' child for sympathy/bragging rights.) Well, this doctor's interview with my mom cleared up the possible of proxy, so it had to be in my head.
Now, when you tell a ten-year old girl that her pain is all in her head, it messes with her. My mantra became 'quit being weak.' I exercised, stretched, and tried to push through the phantom pains. If I had made myself sick, I would cure myself. However, nothing worked. A few months later, Mom saw one of hidden grimaces and quietly asked, "Has it gotten any better?"
The words torn my soul as I replied, "No, it hasn't."
By the time I was 16, it still hadn't gone away. More of my body hurt and I'd also started getting migraines. My mental health had also declined - the stress of pushing through pain and self-doubt had developed into full anxiety and depression. It was all I could do to finish my schoolwork, and collapse into bed. To me, other people seemed to have superpowers. I wanted superpowers.
To cope I made up stories. I dreamed that the pain in my knuckle was my retractable claws coming in. My body ached in the morning because I was a secret agent; I fought in the night and had to have my memories wiped to kept my family safe. Reality sucked, so I retreated to other worlds.
Then reality broke, I simply couldn't manage college. It wasn't my intelligence (A's and B's in a Watchmaking and Mircotechnoloy Course), I was simply breaking down physical and emotionally. My days became a cycle of sleep, migrianes, and numbness. Sometimes couldn't tell if I was awake or having a dream about going to class. This was a far cry from the dreams of my childhood.
Fortunately, my parents had long decided that what I had was real. It was time to restart the hunt. They shouldered my medical bills and pushed me to seek Disability Benefits. We visited a different neurologist, an endocrinologist, therapists - it was a very frustrating time. A new cycle of office visits, complicated tests, expensive pills, horrible side affects, then back to the office. There was lots of jargon like fibromyalgia, Bio-feed back loop, and the hated, "We'll see want happens." I reentered college and burned out twice more (I now have over 88 credits towards a Engineering Degree.) It was a hellish overlay on daily life. However, finally in the year 2014, I got a real diagnose.
It wasn't JRA, or a problem with my brain or nerves, or a figment of my imagination. I was a bonafide mutant. An important gene on the very end of the D.N.A chain was different. This gene has a long name, Methylene tetrahydrofolate reductase, and produces an enzyme that turns folic acid into active folate.
So what does that mean? Well, Folic is basic man-made vitamin B. It's found in fortified foods and general suppliments (daily vitamin pills and energy drinks.) A normal person will convert the folic to folate and which will be used to fuel cell in the body. My enzyme is faulty and can't activate enough vitamin B to fully power my body. Skin, nerves, muscles, blood and brain all need folate to repair and grow. This explained the pain, the migraines, the fatigue, even my allergies. As I learned more, the world opened up for the first time in a decade. I wasn't lazy or crazy. I was truly sick! Good news!
Then came the better news. My condition was treatable. I simply needed to take folate and bypass the faulty enzyme.
It was like getting my delayed letter from Hogwarts, while building a lightsaber, inside the Tardis. My story could change. I am a mutant and I can live with it!
//////////////////////////////////////////////////////////
Now, why have I put something so personal on a forum for a webcomic? Internet friends aren't the same as face-to-face friends, and the reader can't truly know if I'm just spinning another well thought out tale (see back-story thread in MCCC.) So why put this on the world-wide web?
1) The MTHFR mutation
(seriously, that's the official abbreviation) is surprising common. In the U.S.A over 10% of the population have the mutation. However, the severity of the mutation - number and locality of changes - varies. The severity will affect the enzyme activation rate (some people can only active 90% of their folic, others it's down to 40%.) As doctors learn more about folic/folate's role, they have linked chronic conditions, heart disease, cancer, and even pregnancy complications to the MTHFR mutation. This is a BIG DEAL! Patients and Primary Care doctors should know about this!2) As happy as I am (three months of folate and old friends said, 'You look great! What happened?'), it took over 10 years and a lot of trauma to get here. It still pisses me off that all those specialists were show up by a holistic/integrated medicine doctor who advertised on the radio. With the cost of also those M.R.I.s (had four) the two C.T.s, dozens of thyroid labs, pills and co-pays, my parents could have payed out-off pocket for the genetic labwork and given me a ten-year supply of folate. I've lost money, time, and several once-in-a-life-time chances, because I was so sick for so long. I DON'T want to see anyone else stuck in that medical rat-race.
If you have or know someone with a chronic illness, please check the following links. I know, I know - you/they are probably sick and tired about outside advise. However, isn't our mantra 'it might be worth a try?' Heck, after playing 'boom goes my brain!' with doctor prescribed pain meds, nerve modulators, hormone pills,and even valium, I felt this folate pill had an excellent risk/reward ratio. I was broken and now I feel alive. Why wouldn't I want to share the method?
Wiki Article on the MTHFR gene
Folic and MTHFR in Layman's Term, doctordoni.com/
Inheritablity of MTHFR www.counsyl.com (Outdated understanding of folic/folate, but good population statics.)
One of the Top sources on MTHFT, mthfr.net/
