This is a very interesting letter that explains some of how we hPTers feel. It is written by a hPTer that is very insightful. The bold parts are the most touching

"In 1990 Tim O'Brien published the novel that put his name on the
literary map of the world, "The Things They Carried." It was a
stirring, evocative and gripping novel about the lives of American
soldiers fighting in Vietnam. I read it for the first time in college,
and it has stayed with me over the years. I even got to hear him speak
about the book once.

Much like "The Pilgrim's Progress," he tells stories of the things
these men took with them into battle - pictures, families, memories,
emotions, letters. These were the things in their packs. Just like the
pilgrim on the journey had a burden packed on his back, filled with his
family, emotions, guilt, hurt, sin, worry, failures, greed, hopes and
dreams.

It is a fact that the vast majority of patients with HPTH(hPT) suffer from a
variety of mental illnesses, mainly centering around depression and
anxiety. Yes, there is a defined and explainable biochemical link
between calcium and mood, but I suspect there is another reason so many
of us suffer from these mood disorders.

The things we carry...

My endocrinologist, a specialist in calcium disorders, once told me
that HPTH is notorious for being a changeable disease. Things can be
good, stable and normal for months at a time when out of the blue - it
hits. A change.

We wake up in the middle of the night unable to move fingers, arms or
legs. We get an ordinary bout of the flu, can't keep down our array of
pills and end up in the ER on an IV. We eat a meal high in phosphorous.
A doctor tells us it's all "in our head" when we try to explain how
wrong it feels on the inside of us right at that moment even though our
calcium number is in the normal range. We get mood swings we can't
explain. A bad workout for us means a bout with tetany, not a slow time
in a race. We feel isolated and that doctors just don't understand what
it's like to live this way.

We never know when the next bout is coming. We never know what is going
to trigger it. A meal high in phosphorous? Stress at home or at work? A
semminly innocuous illness? The "normal" hormonal changes that happen
in women of childbearing age? Or something that defies explanation,
that just IS, that just HAPPENS.

We have to make trades to find an acceptable quality of life. We live
with side effects of medications that make us want to crawl the walls
sometimes. We swallow disgusting, chalky tablets and cool, peppermint
liquids by the ton. Our pill boxes look more like a safe than a health
aid. We weigh more than we want to. We don't eat things we like because
we're afraid of eating too much phosphorous.

We wonder how much is really US and how much is just our hormones or
our disease.

We have to accept that we can't always do what we want to do, when we
want to do it. We can't always explain to others what is happening to
us.

We keep our medication list updated just in case we wake up unable to
talk because tetany has frozen our facial muscles.

We can't perform at the physical levels we would like to. Many of us
are unable to exercise at all.

Some of us are even officially disabled or in serious kidney failure.

We can live for fifty years with this disease, or five before serious
complications start to happen.

We just don't know. Our doctors don't understand it. They don't always
know what to do for us. We're unwilling lab animals a lot of the time,
making history for those who come after us.

At some point, we question ourselves because those around us look at us
so oddly, and with such question and doubt. Why do they complain so
much? Why are they always tired? Why can't mommmy do this with me? Why
can't daddy come to my game? Why are they calling the doctor for the
third time this month? Why are they always getting blood drawn? Do they
really need all those pills? How much of this is just pure psychology?
Maybe all they need is some anti-depressants.

These are the things that we carry with HPTH.

While these burdens make life more difficult for us, I do believe that
it also gives us an opportunity. When I look back at the history of
Catholic saints, I see models of men and women who suffered under
terrible illnesses and burdens and yet found a way to live a life of
purpose and meaning. I think that our challenge is to find that way,
that road, that path to meaning so that we don't get lost in the weary
trod with the pack weighing us down, never lifting our eyes from the
work of the daily walk.

A friend said to me today, "you must spend a lot of time asking WHY
ME?" And I laughed. I don't ask that question at all. The question that
I ask is WHY CAN'T I? Why can't I have stable calcium levels? Why does
it hit me out of the blue? Why do I have to eat a certain way? Why do I
have to take so many pills all the time? Why can't I have a little more
freedom with my body? Why can't my doctors understand me?

In May, I asked "why can't I be a runner?" And I decided that I could.
So, I did. I ran two races this year and will run my third in four
weeks. I ran a 5K, 10K and my last race of the season will be a 5-mile
trail run. I started running simply to prove to myself that I COULD.
That the answer to WHY CAN'T I can sometimes be YES, I CAN.

Every time I run, I carry all of you with me. Every time my foot hits
the road, you are with me. Because I live this life too.

The things we carry with HPTH. "
Written by a fellow HTPHer
Thank you from the bottom of my tetany filled heart...
The calcium junky