...
YOU SUCK
Take a happy look at my poll asking people how long they suffered before being properly diagnosed (probably by accident) with Chiari.
As of today-
-26 of 29 people suffered for over a year.
-Of them, 19 suffered for at least 5 years.
-9 of those poor people suffered for OVER 15 YEARS!
Is it apathy or stupidity?
Regardless, YOU SUCK
I thought you should know.
I wish people would donate money for research so we can unstupid you.
Unfortunately, your unsuckethness rides the back of a unicorn.
....
Tuesday, October 14, 2008
PUZZLE PIECES
So how do you put a puzzle together when your brains are falling out?
Persistency.
I spend my life trying to fit together the pieces of this Chiari puzzle and my continuing battle of feeling like shit warmed over. Everyday I wake with a new combination of complaints. Here are some of the fun recipes-
COOKING WITH CHIARI
1) confusion + headache
2) headache + joint pain
3) cognitive FUBARedness + malaise
4) migrating joint pain + headache + neck pain
5) dibilitating holycrap my head hurts pain + Icantgetmywordsout + numbness in my face
6) I forgot + tingling in my I forget
7) discoordination + eye pressure + malaise
8) confusion + headache + malaise + I forgot + cognitive imbecileness + kill-me it hurts + putme to bed for a month exhaustion
9) all the above at once
10) none of the above + I'd sell my soul to the devil for it to last
Given that I've already had my head cracked open, had a hunk of my brain fried off, had a lovely NASA-worthy chunk of titanium screwed into my skull and I've got the ugliest 8 inch zipper scar from the tip of my head to the back of my neck- I SHOULD FEEL *&^%ING BETTER THAN THIS, don't you think!!!!!!!!!!!!!!!!!!!!!???????
Well, I don't and it pisses me off.
What does my pissedoffness get me?? Persistency.
I try to fit together every lame piece of this puzzle I can find. Some fit, some don't. Some, I can't tell if fit until the picture is bigger.
Some pieces... DO THEY FIT?
I started looking at my labs (recent and over the years). Here's what I found.
I am ANEMIC (no one knows why)
I am Vitamin B12 deficient
and I have a very low Alkaline Phosphatase in every lab result I've had since 1980.
I did some research and found a connection between these values and "Pernicious Anemia".
Check out the symptoms
I obviously have many of those symptoms. Now here's the thing that has my brain going 100 miles per minute-
FOLIC ACID is a Vitamin B
As most people know, FOLIC ACID is essential for the prevention of neural tube defects (chiari etc..). So is it safe to assume deficiency in folic acid means a woman will have a higher risk of giving birth to a baby with neural tube defects (birth defects involving the brain and spinal cord- ahem* CHIARI)??
I took plenty of prenatal vitamins (fortified with folic acid) while pregnant, but here's the kicker- If I have pernicious anemia, the folic acid/vitaminB would never have made it to my bloodstream unless I injected it or took it sublingually.
All of the symptoms of pernicious anemia are easily remedied and reversed with Vitamin B12 injections. Imagine if all this time, a single shot once per month would be all it took to fix me? Could this be why I'm still so sick in spite of my surgery?
BIGGER STILL- Imagine if all I had to do was take Vitamin B12 injections while pregnant to prevent my children from getting Chiari?
BIGGER BIGGER STILL- Imagine if my mom and I (and her mom too) all have the congenital form of pernicious anemia and we all kept making babies with neural tube defects because our bodies wouldn't hold on to necessary folic acid????
EVEN BIGGER THAN THAT- Imagine if ...nahhh I won't get too far ahead of myself :)
I'd like your thoughts, please.
You're welcome to call me crazy
Persistency.
I spend my life trying to fit together the pieces of this Chiari puzzle and my continuing battle of feeling like shit warmed over. Everyday I wake with a new combination of complaints. Here are some of the fun recipes-
COOKING WITH CHIARI
1) confusion + headache
2) headache + joint pain
3) cognitive FUBARedness + malaise
4) migrating joint pain + headache + neck pain
5) dibilitating holycrap my head hurts pain + Icantgetmywordsout + numbness in my face
6) I forgot + tingling in my I forget
7) discoordination + eye pressure + malaise
8) confusion + headache + malaise + I forgot + cognitive imbecileness + kill-me it hurts + putme to bed for a month exhaustion
9) all the above at once
10) none of the above + I'd sell my soul to the devil for it to last
Given that I've already had my head cracked open, had a hunk of my brain fried off, had a lovely NASA-worthy chunk of titanium screwed into my skull and I've got the ugliest 8 inch zipper scar from the tip of my head to the back of my neck- I SHOULD FEEL *&^%ING BETTER THAN THIS, don't you think!!!!!!!!!!!!!!!!!!!!!???????
Well, I don't and it pisses me off.
What does my pissedoffness get me?? Persistency.
I try to fit together every lame piece of this puzzle I can find. Some fit, some don't. Some, I can't tell if fit until the picture is bigger.
Some pieces... DO THEY FIT?
I started looking at my labs (recent and over the years). Here's what I found.
I am ANEMIC (no one knows why)
I am Vitamin B12 deficient
and I have a very low Alkaline Phosphatase in every lab result I've had since 1980.
I did some research and found a connection between these values and "Pernicious Anemia".
Pernicious anemia is caused by a lack of intrinsic factor. Intrinsic factor is a protein produced by the stomach that helps the body absorb vitamin B12. When stomach does not have enough intrinsic factor, it cannot properly absorb the vitamin. Nerve and blood cells need vitamin B12 to function properly.
The onset of the disease is slow and may take decades. Although the congenital form occurs in children, pernicious anemia usually does not appear before age 30. The average age at diagnosis is 60.
Check out the symptoms
Symptoms may include:
Shortness of breath
Fatigue
Pallor
Rapid heart rate
Loss of appetite
Diarrhea
Tingling and numbness of hands and feet
Sore mouth
Unsteady gait, especially in the dark
Tongue problems
Impaired sense of smell
Bleeding gums
Positive Babinski's reflex
Loss of deep tendon reflexes
Personality changes, "megaloblastic madness"
I obviously have many of those symptoms. Now here's the thing that has my brain going 100 miles per minute-
FOLIC ACID is a Vitamin B
As most people know, FOLIC ACID is essential for the prevention of neural tube defects (chiari etc..). So is it safe to assume deficiency in folic acid means a woman will have a higher risk of giving birth to a baby with neural tube defects (birth defects involving the brain and spinal cord- ahem* CHIARI)??
I took plenty of prenatal vitamins (fortified with folic acid) while pregnant, but here's the kicker- If I have pernicious anemia, the folic acid/vitaminB would never have made it to my bloodstream unless I injected it or took it sublingually.
All of the symptoms of pernicious anemia are easily remedied and reversed with Vitamin B12 injections. Imagine if all this time, a single shot once per month would be all it took to fix me? Could this be why I'm still so sick in spite of my surgery?
BIGGER STILL- Imagine if all I had to do was take Vitamin B12 injections while pregnant to prevent my children from getting Chiari?
BIGGER BIGGER STILL- Imagine if my mom and I (and her mom too) all have the congenital form of pernicious anemia and we all kept making babies with neural tube defects because our bodies wouldn't hold on to necessary folic acid????
EVEN BIGGER THAN THAT- Imagine if ...nahhh I won't get too far ahead of myself :)
I'd like your thoughts, please.
You're welcome to call me crazy
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