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"I get out of bed in the morning, and put on my underwear.  After that I am so exhausted that I feel like I need to get back into bed and take a nap."
- Lillian Hester McDaniel Borthick
June 2, 1895 - February 25, 1978


KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic.  There are two parts to each diary.  First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.

Lillian Hester McDaniel Borthick was my maternal great aunt.  She suffered from and ultimately died from pernicious anemia.  Back when she spoke about how tired she would get, I didn't understand.  I empathized, but I didn't understand.  I was 16 when she died.

It wasn't until I was diagnosed with pernicious anemia that I fully understood the  fatigue that others mistake for laziness.  When the simple act of getting out of bed and putting your underwear on saps all your strength.  She wasn't embellishing or kidding.  Without treatment it is that bad.

My diagnosis came when I went to see my doctor  about my hands which hurt all the time. my hands and feet tingled, my skin would “hurt” all over (I call it “skin exhaustion” because that’s the closest I can come to explaining the sensation to others; how one feels when totally exhausted, except applied solely to the skin), dizziness, chronic pain that wasn’t in my joints, and I was experiencing muscle weakness.  Because I am a CNA I have taken care of people who had Multiple sclerosis(MS)  and their symptoms,  had in many cases, started out this way. It was, however, a disease I was terrified of getting.

The test came back indicating that I had Pernicious anemia (or vitamin B12 deficiency anemia).


People with mild anemia may have no symptoms or very mild symptoms. More typical symptoms of vitamin B12 deficiency anemia include:

Diarrhea or constipation
Fatigue, lack of energy, or light-headedness when standing up or with exertion
Loss of appetite
Pale skin
Problems concentrating
Shortness of breath, mostly during exercise
Swollen, red tongue or bleeding gums
Nerve damage caused by vitamin B12 deficiency that has been present for a longer time may cause:
Confusion or change in mental status (dementia) in severe or advanced cases
Loss of balance
Numbness and tingling of hands and feet
- U.S. National Library of Medicine (NIH)

What is pernicious anemia?
Pernicious anemia (per-NISH-us uh-NEE-me-uh) is a condition in which the body can't make enough healthy red blood cells because it doesn't have enough vitamin B12.
Vitamin B12 is a nutrient found in some foods. The body needs this nutrient to make healthy red blood cells and to keep its nervous system working properly.

People who have pernicious anemia can't absorb enough vitamin B12 from food. This is because they lack intrinsic (in-TRIN-sik) factor, a protein made in the stomach. A lack of this protein leads to vitamin B12 deficiency.
- National Heart, Lung, and Blood Institute (NIH)

How is it caused?
Very rarely, infants and children are born without the ability to produce enough intrinsic factor, or the ability to absorb the combination of intrinsic factor and vitamin B12 in the small intestine. Pernicious anemia that occurs at birth (congenital) is inherited. You need the defective gene from each parent to get it.

Common causes of pernicious anemia include:
Weakened stomach lining (atrophic gastritis)

The body's immune system attacking the cells that make intrinsic factor (autoimmunity against gastric parietal cells) or intrinsic factor itself

The disease begins slowly and may take decades to fully establish. Although the congenital form occurs in children, pernicious anemia usually does not appear before age 30 in adults. The average age at diagnosis is 60.

Risk factors include:
Family history of the disease

History of autoimmune endocrine disorders, including:
Addison's disease
Chronic thyroiditis
Graves disease
Myasthenia gravis
Secondary amenorrhea
Type 1 diabetes
Testicular dysfunction
Scandinavian or Northern European descent

See also: Anemia - B12 deficiency for other causes of low vitamin B12 levels.
- U.S. National Library of Medicine (NIH)

I was 32 when I was diagnosed, through a simple blood test that showed malformed (immature) red blood cells.

Autoimmune destruction of parietal cells of the stomach lining is the probable cause of my pernicious anemia (I seem to collect autoimmune diseases).  The parietal cells are those that secrete intrinsic factor. (with a probable assist from genetics)

There are other causes of pernicious anemia:

. . . other factors may also be involved, including poor dietary habits, gastrointestinal infection, Crohn's disease, gastric surgery, and sometimes uninformed vegetarianism.
- Innvista
B-12 is a  water-soluble vitamin.  It can be stored in the fat of your body, which is why it takes so long for pernicious anemia to establish itself.  In fact I may have had the inability to make intrinsic factor far longer than my pernicious anemia made itself known.  

B-12 is also recycled in the body through a process called enterohepatic circulation.  The body empties B-12 into the liver where it is released into the small intestine through bile.  A healthy human body will reabsorb the B-12, but for those, like me, with no intrinsic factor, B-12 just leaves the body.

That's not to say that those with a healthy system will never need to replace lost B-12 in the body.  The body is not a closed system and a certain amount is lost over the years.

Because I can't absorb B-12 the "normal" way, I have been injecting it for the past 17 years.  The "normal way" is through the foods you eat and in supplements you take. (sometimes I can tell that I have forgotten to take B-12 for a while when I get a strong craving for red meat)

Vitamin B12 is found in foods that come from animals, including fish and shellfish, meat (especially liver), poultry, eggs, milk, and milk products.[1] Eggs are often mentioned as a good B12 source, but they also contain a factor that blocks absorption. However, the binding capacity of heat treated egg yolks and egg whites is markedly diminished after heat treatment.[57] Certain insects such as termites contain B12 produced by their gut bacteria, in a way analogous to ruminant animals.[58] An NIH Fact Sheet lists a variety of food sources of vitamin B12.[1]

While lacto-ovo vegetarians usually get enough B12 through consuming dairy products, vegans will lack B12 unless they consume B12-containing dietary supplements or B12-fortified foods. Examples of fortified foods include fortified breakfast cereals, fortified soy products, fortified energy bars, and fortified nutritional yeast. According to the UK Vegan Society, the present consensus is that any B12 present in plant foods is likely to be unavailable to humans because B12 analogues can compete with B12 and inhibit metabolism.[59][60]
-Wikipedia Vitamin B12; Sources

There is no known way to prevent pernicious anemia. Without treatment pernicious anemia is fatal.  With treatment outcomes are usually very good, including a reversal of nerve damage if the treatment is started within 6 months of the beginning of symptoms.  Otherwise the nerve damage is permanent.

People with pernicious anemia have an increased risk of gastric polyps, gastric cancer and gastric carcinoid tumors.

In memory of my Aunt Lillian Borthick, on the anniversary of her death.

Oh, did you think that was all?  Come now, this is me, go big or go home Clytemenstra!    I wouldn't claim a whole diary in the name of "Bad Blood" if it was only about one anemia.  Oh, noo, noo, nooo!

Take two, they're small!  

I suffer from another form of anemia.  It came into being a few years after the pernicious anemia was diagnosed and after my fourth child was born. I contracted  iron deficiency  anemia from menorrhagia

Menorrhagia is the medical term for menstrual periods in which bleeding is abnormally heavy or prolonged. Although heavy menstrual bleeding is a common concern among premenopausal women, most women don't experience blood loss severe enough to be defined as menorrhagia.

With menorrhagia, every period you have causes enough blood loss and cramping that you can't maintain your usual activities.

- Mayo Clinic

Oh, yeah, that thing.  The thing I wrote a Halloween inspired KosAbility diary about last October.
[iron deficiency] Anemia is a condition in which the body does not have enough healthy red blood cells. Iron is an important building block for red blood cells.

When your body does not have enough iron, it will make fewer red blood cells or red blood cells that are too small. This is called iron deficiency anemia.
- U.S. National Library of Medicine (NIH)

Iron-deficiency anemia (or iron-deficiency anaemia) is a common anemia (low red blood cell level) caused by insufficient dietary intake and absorption of iron, and/or iron loss from intestinal bleeding, parasitic infection, menstruation, etc. Red blood cells contain iron and are not formed when iron is deficient.[1]
- Wikipedia
Well at least this one is pretty straight forward, we know the cause and the effect!
Most of the time, symptoms are mild at first and develop slowly. Symptoms may include:

Feeling grumpy
Feeling weak or tired more often than usual, or with exercise
Problems concentrating or thinking

As the anemia gets worse, symptoms may include:
Blue color to the whites of the eyes
Brittle nails
Light-headedness when you stand up
Pale skin color
Shortness of breath
Sore tongue
Symptoms of the conditions that cause iron deficiency anemia include:
Dark, tar-colored stools or blood
Heavy menstrual bleeding (women)
Pain in the upper belly (from ulcers)
Weight loss (in people with cancer)
- U.S. National Library of Medicine (NIH)

Your body does store iron, like B-12 and you can get  iron deficiency anemia (like pernicious anemia when what your body stores run low or run out.  
You get iron deficiency anemia when your body's iron stores run low. You can get iron deficiency if:

You lose more blood cells and iron than your body can replace

Which can happen if you have peptic ulcer disease, cancer in the sophagus, stomach, or colon, esophageal varices, use aspirin or ibuprofen over a long period,  or you have (ding, ding, ding) heavy, long, or frequent menstrual periods
Your body does not do a good job of absorbing iron
Which can happen if you take too many antacids containing calcium, have Celiac disease, have  Crohn's disease, or have had gastric bypass surgery.
Your body is able to absorb iron, but you are not eating enough foods with iron in them
Which can happen if you are a strict vegetarian or an an older adult not eating a full diet.
Your body needs more iron than normal (such as if you are pregnant or breastfeeding)
I take an iron supplement.  It's time released as to keep me from having stomach upset and decrease the likelihood of constipation.

If one cannot take iron by mouth, it can be given intravenously or through injections (just like the B-12 I take).  Eating foods rich in iron also helps.  These include; "chicken and turkey, dried lentils, peas, and beans, eggs (yolk), fish, meats (liver is the highest source), peanut butter, soybeans, whole-grain bread, oatmeal, raisins, prunes, and apricots, spinach, kale, and other greens."

Everything should be back to normal within 2 months.

Okay, I'm done.  Sorry for the lack of humor in this diary - it's not my standard I know, and before you ask, no I am not sick and there is nothing wrong.  Except that when I volunteered  to do a diary on this day I forgot to check a calendar . . . . it's school vacation week here in Massachusetts (left over from when they would spend the week harvesting ice) and we have some family traditions that we always do during the last of this week that I need to get ready for.

This diary is also the first detailing a few of the many issues I laid out in a previous KosAbility diary, KosAbility: I should be freaking Wonder Woman by now (Kelley should be happy :-)  )

* source: U.S. National Library of Medicine (NIH)

You're not seeing double or having deja vu .. I had to recopy and repost this because it was from an old diary draft and it just wouldn't show up on the lists.

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