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

Update

It has been awhile cause I was waitnig to hear from the NIH about next date to start new drug. They have been having changes at the NIH and have but all of us in the study on hold. I am very fustrated about that news, but am doing better than I was in August. I am having ga hard time saying no to things I should and wearing myself out. I want to be the old me that could do a lot of stuff for other people. I am not that person anymore and it is hard to stop trying to do everything I feel I want to do.

Update

I am going to start the new PTH treatment in August (59 days!!!). I hope the new medication works as well as they say. I cannot wait to feel close to normal again.

Just an update.

The new diet seems to be helping. The pain in my kidneys have gone and I feel better physically. I still have bone pain that keeps me up at night and muscle fatigue. I am also getting into the hot season when I start getting nauseas easily. But over all I am doing ok. I am not as depressed as I was a couple of weeks ago. And it is only about 65 days till I go back to the NIH!!!!

What the hell... another new diet

OK so I have been on this new diet the doctor 'suggested' for a couple of weeks. I do feel better physically but I am struggling. I am on a low phosphate diet. I know I said huh when I heard it to. Well come to find out when phosphate is high calcium is low in your blood and vise versa. So I had high phosphate which was causing my blood calcium to drop, in return I would need to take more calcium leading to more calcium damage. So I have had to stop Coke( the drink) and those of you that Know me know that is a stretch. I also have to limit my meat, seafood, poultry, etc to 5oz a day! And I have to eat refined white bread, rice, noodle. and no asparagus, mushroom, corn...all my favorite veggies. But I do get cucumbers and fresh tomatoes! I really hope that the new medication in August helps me as much as they say it will.
Well that's all the ranting I have for today.
Christy

hPTH sucks

It's 2am and sleep eludes me yet again. I wish I could do the dishes or laundry to help Roy out but the bone pain is really bad tonight. I logged on to rant about how bad I feel but maybe I just need to say how lucky I am to have Roy.
I get so mad because I explain what is wrong with me a thousand times and some people just don't get it. Like someone in my family saying oh its not your thyriod that is making you sick it something else... really where have they been!!!!!!!!

Good thing I am a hoarder

Good thing I am a hoarder. I stash Calcium EVERYWHERE, I even hide them when I am in the hospital. Yesterday sucked. I was at work and bam I hit the proverbial wall...I crashed (calcium dropped). I hate doing that in public every one looks at you with pity in their eyes. I don't want pity I want to be better. I want to not need to hide calcium of all things in strange places. I want to sleep alllll night without pain, I want to remember without this brain fog, I want to not need to explain what hpt is to everyone EVEN DOCTORS. I want to be the mom and wife I was three years ago. I want my life back!

The Heart of a junky

I use to say 'why do addicts not just put there stuff down and walk away'. Well I can know say I can completely understand that you just can't stop and walk away.

Once when I was in the hospital I was afraid that the nurses would not bring my calcium fast enough and when I am jonesen for a Ca fix need it. I called my 'suppler' in the middle of the night and my husband snucked a jar of ca pills in to my room. I hide them in MY SHOE. I needed the security of knowing that I could get it at a split second if needed that I hide CALCIUM (a mineral) in my shoe so no one would find it. That night was my first clue that I a may have issues with needed ca ariund me. And trust me I stash them EVERYWHERE.

Without this simple mineral that I never leave home without I can go into tetany a large charlie horse. That is what these hands are starting to do. With more time it will be all over and hard as a rock. My heart beat feels like a rock crushing into my chest and breathing gets harder. Sadly most ERs want to give us insulin thinking we are diabetics.

How I became a junky!

You have four parathyroid glands behind your thyriod on your neck. These four glands regulate calcium in your body. Most peolpe know that calcium is needed in the bones for strength what they do not know is that we need calcium in our blood as well. These glands release PTH which tells your body to absorb or release calcium. So I have no PTH in my blood to to tell my body what to do with the calcium. So if I don't eat enough calcium I crash. My body goes into one large giant charlie horse and my heart stops. Why? Because calcium is needed for muscle contraction and relaxation. This really sucks and has screwed up my life and know you get to read all about it.