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altarflameI just got diagnosed over the phone with pernicious anemia.
Basically that means my body can't absorb B12 from food anymore. So, I have to get B12 shots and/or take oral megadoses of B12 for the rest of my life, because symptoms of serious B12 deficiency are straight up terrible - everything from exhaustion to dangerously enlarged liver - painful joints, nerve damage and "impaired cognition," and heart arrhythmia, weakened bones...generally speaking, though, as long as you get your shots you're fine. "Pernicious" means deadly, because this used to be a death sentence, before it was so easy to supplement the B12.
Causes can be autoimmune, wherein your immune system is attacking a protein your stomach normally makes called intrinsic factor, which enables your digestive system to process B12. Eventually your stomach lining gives up even trying to make more intrinsic factor and you just don't have any. And I do have inflammation, which points to autoimmune issues.
It can also be because you've had part of your small intestine removed, which I obviously have.
It is scary as hell to think that I've been falling down stairs and unable to move myself around and CONFUSED all the time, because of this. My numb, tingling, weak hands... I am trying to just console myself that lifelong B12 shots are wildly less terrible than the colostomy bag I was warned I might need (in 2007, pre-op). And, pernicious anemia is not degenerative as long as it's treated, so obviously that is a much better option than RA, which I was very afraid of...
People with pernicious anemia are about 3 times more likely than the general population to develop stomach cancer. The normal odds are very very good/small, though, so that is still "only" about 4 out of every 100 people who have pernicious anemia that are getting it. Except that being hispanic also doubles (or more) your risk factor for stomach cancer. And that is like, basically the least survivable cancer, since it's almost impossible to catch early. NO WORRIES THERE O_O
And so I am trying to console myself that I really could have died in the ICU, and I didn't. Instead I have somewhat increased odds of one day developing a rare cancer. WAY BETTER, right? I mean I'll probably die on a Miami highway before that could ever happen.
Pernicious anemia is also called megaloblastic anemia, because what it really is, is an inability by your body to produce enough healthy red blood cells, since B12 is used in the production of red blood cells. Instead you have these huge, too-few red blood cells. Which effects you systemically, until you start supplementing.
Apparently there is irreversible and reversible damage happening leading up to diagnosis, while your blood is all wack - brain, nerve, organ, bone, TEETH (I've gotten 10 of my 15 fillings done so far), etc...and this varies for everyone. The earlier you catch it the better, though, as far as what goes back to normal, and it seems from my reading that most people are way worse off than I am before they do figure out this is what's going on.
I would like to think this is related to surgery partially because otherwise it is very hereditary; one of the things on the list of things to do is tell my kids and siblings all about it, since any of them may also have or develop it.
Five minutes of crying, half an hour on the phone with my sister and some distractions later, I am ok with this situation. There was still some part of me hoping that the potentially subjective things I was suffering from could add up to be, you know...nothing. Something that passed unexplained, or was at least curable. But (like Laura said, and is obvious...) things have been way TOO wrong for that. So! This it is :p It means doctors appointments forever and explaining this to people over and over and over, and all in all it's not so bad. It shouldn't be hard to get my disability allowance for last semester when I explain WHY I was a wreck with a firm diagnosis, either. And it should also not be too hard to get back to being a better student.
I am slightly squinty eyed with suspicion about how this can sometimes be a piggybacking disorder that coincides with some other problem (like RA), but, you know...we'll cross that bridge if we come to it.
Basically that means my body can't absorb B12 from food anymore. So, I have to get B12 shots and/or take oral megadoses of B12 for the rest of my life, because symptoms of serious B12 deficiency are straight up terrible - everything from exhaustion to dangerously enlarged liver - painful joints, nerve damage and "impaired cognition," and heart arrhythmia, weakened bones...generally speaking, though, as long as you get your shots you're fine. "Pernicious" means deadly, because this used to be a death sentence, before it was so easy to supplement the B12.
Causes can be autoimmune, wherein your immune system is attacking a protein your stomach normally makes called intrinsic factor, which enables your digestive system to process B12. Eventually your stomach lining gives up even trying to make more intrinsic factor and you just don't have any. And I do have inflammation, which points to autoimmune issues.
It can also be because you've had part of your small intestine removed, which I obviously have.
It is scary as hell to think that I've been falling down stairs and unable to move myself around and CONFUSED all the time, because of this. My numb, tingling, weak hands... I am trying to just console myself that lifelong B12 shots are wildly less terrible than the colostomy bag I was warned I might need (in 2007, pre-op). And, pernicious anemia is not degenerative as long as it's treated, so obviously that is a much better option than RA, which I was very afraid of...
People with pernicious anemia are about 3 times more likely than the general population to develop stomach cancer. The normal odds are very very good/small, though, so that is still "only" about 4 out of every 100 people who have pernicious anemia that are getting it. Except that being hispanic also doubles (or more) your risk factor for stomach cancer. And that is like, basically the least survivable cancer, since it's almost impossible to catch early. NO WORRIES THERE O_O
And so I am trying to console myself that I really could have died in the ICU, and I didn't. Instead I have somewhat increased odds of one day developing a rare cancer. WAY BETTER, right? I mean I'll probably die on a Miami highway before that could ever happen.
Pernicious anemia is also called megaloblastic anemia, because what it really is, is an inability by your body to produce enough healthy red blood cells, since B12 is used in the production of red blood cells. Instead you have these huge, too-few red blood cells. Which effects you systemically, until you start supplementing.
Apparently there is irreversible and reversible damage happening leading up to diagnosis, while your blood is all wack - brain, nerve, organ, bone, TEETH (I've gotten 10 of my 15 fillings done so far), etc...and this varies for everyone. The earlier you catch it the better, though, as far as what goes back to normal, and it seems from my reading that most people are way worse off than I am before they do figure out this is what's going on.
I would like to think this is related to surgery partially because otherwise it is very hereditary; one of the things on the list of things to do is tell my kids and siblings all about it, since any of them may also have or develop it.
Five minutes of crying, half an hour on the phone with my sister and some distractions later, I am ok with this situation. There was still some part of me hoping that the potentially subjective things I was suffering from could add up to be, you know...nothing. Something that passed unexplained, or was at least curable. But (like Laura said, and is obvious...) things have been way TOO wrong for that. So! This it is :p It means doctors appointments forever and explaining this to people over and over and over, and all in all it's not so bad. It shouldn't be hard to get my disability allowance for last semester when I explain WHY I was a wreck with a firm diagnosis, either. And it should also not be too hard to get back to being a better student.
I am slightly squinty eyed with suspicion about how this can sometimes be a piggybacking disorder that coincides with some other problem (like RA), but, you know...we'll cross that bridge if we come to it.
