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This a story about my battle with hyperparathyroidism.  For more information on this condition, please see Parathyroid.com.

For the past few years, I have been very sick.  It wasn’t long ago that my day to day was little more than a battle with pain and fatigue.  I’m not sure what was worse—the physical pain that came with the disease I unknowingly had, or the knowing that I was sick, and the psychological hurt I bore in the face of those (mostly doctors) who told me in so many words that I was little more than a depressed hypochondriac.  I don’t entirely blame them.  It wasn’t unreasonable to bring up depression, to wonder what physical effects it was having on me; because I was depressed.  How could I not be when I spent my late 20s and early 30s feeling like an 80 year old?

But the single blood test that was ignored, even as I sought help for worsening symptoms, is unforgivable.  Unfortunately, this very thing happens all the time.  The people affected range from those with a few general aches and pains who don’t yet realize there is anything wrong, to those who can feel their bodies shutting down, without explanation, and without appropriate concern from their doctors.  Yet the blood test is such a simple one.  And it was there, waiting in my medical records for anyone astute enough to notice.  I had high blood calcium, and no one who isn’t in the late stages of cancer or suffering from kidney failure, should have high blood calcium levels.

The problem is that during our teenage and young adult years, our calcium levels are supposed to be a little higher than when we are older adults, so the old method was to include those higher levels in the median for ALL humans, irrelevant of a person’s age.  Unfortunately, that method is still being used by most doctors today.  Thanks to the efforts of doctors like those at the Norman Parathyroid Clinic, there is a growing awareness in the medical community that a person’s age MUST be taken in to account when determining if their calcium levels are in the norm.  I feel a responsibility to contribute to this awareness, to share my own story of this very curable disease, both as a writer and as a person.

I believe it began sometime between the births of my two children.  It’s difficult to sort the sleepless nights of new motherhood from medical-related fatigue and possible post-partum depression from the relentless hopelessness that would consume me long beyond their babyhoods.  But the things that I can clearly identify happened in quick sequence; a diagnosis of low thyroid, appendicitis, gall bladder failure, severe bone and joint pain, increasing digestive problems and a diagnosis of ovarian cysts.  All of this alongside a deep fatigue that was never relieved by sleep.

There were moments that will always haunt me.  The chill of helplessness I felt as my infant lay crying with a soiled diaper while I, too, cried over him, because the pain in my hands was so severe I couldn’t manage the snaps on his onesie.  Sitting in the driveway, exhausted and in tears, because I had spent the past hour taking the wrong vehicle to the wrong place and could no longer remember what it was I had first set out to do.  The times I woke in the middle of the night in a cold sweat with a pain like a hot poker burning through my insides, and the hours I spent in the bathroom, gripping tile, wondering at what point to wake my husband so he could take me to the ER (these, I suspect now, were kidney stones).  My young son finding me hidden behind the kitchen sink, sobbing because I was in so much pain, and so achingly tired, I couldn’t contain it any longer.  Crawling on my hands and knees to my bed in the afternoon because the pain in my legs was so awful, after just a walk around the block.  Staring at a bottle of pain pills, unable to remember how many I’d taken and how long ago, and if the hole that was burning through my stomach was worth the very slight relief I would get from taking more.  Sitting at my desk, eyes burning at 10am, knowing it was pointless to open my laptop; I couldn’t write.

For years, I bore these invisible scars.  A mind that couldn’t function under the deluge of calcium blocking my synapses; a body whose outward appearance gave nothing away about the bones that ached as stores of calcium were leached away, osteopenia making its slow claim; a heart that beat so frighteningly out of rhythm as to take my breath away, but almost never during an echocardiogram or under a stethoscope; and nights spent battling the dark, wondering how it was I could barely see straight all day for fatigue, but couldn’t claim even an hour of sleep.  I could have screamed, but instead I tried to bite my tongue, because those who knew had had enough of my complaining.

It was only when I crawled into the office of a physician’s assistant, begging him to check my iron levels because I was so tired, and my heart was beating so hard in my chest I was scared I’d have a heart attack, that someone finally took a glance at my medical records and said the words that would eventually save my life.  “Do you know you’ve had high blood calcium in the past?”  Even then it wasn’t a huge concern—my levels weren’t that far off the norm—and I was still a young-ish adult.  But I went home that day and quickly found a website that offered a thorough explanation of hyperparathyroidism as a leading cause of high blood calcium.  Listed there were all of my symptoms, once thought to be too vague to ever lead to a valid diagnosis.  It was my first introduction to the team of doctors who would ultimately cure me.  And though I still faced doctors, including an endocrinologist, who continued to tell me there was nothing worth worrying about, I gave myself permission to do what I needed to regain my life, and I referred myself to the Norman Parathyroid Clinic.

Mine wasn’t a straight and simple road to recovery.  After my first surgery, during which Dr. Norman removed a parathyroid tumor as well as 80% of my thyroid (which had been damaged by Hashimoto’s), I spent a year as one of the less than 1% that are not cured after visiting the Norman Parathyroid Clinic.  Yes, you read that right–their cure rates are indeed that high.  The reason I wasn’t among the cured was because one of my four parathyroid glands was not in its normal position behind the thyroid, and with my inflamed thyroid complicating matters, Dr. Norman was unable to locate it during the first surgery.  We had hope that that gland was normal, but when, a month after surgery, my blood calcium levels came back at 11, we knew that missing gland was also tumorous—that I was still as sick as ever.  A year is a long time to wait and wonder while the body continues to fail.  I won’t claim any glory—I was terrified, angry, and sicker than I’d ever been.  I began to wonder what my options were if this tumor could never be found, because I could not imagine the kind of slow death this would ultimately lead to—not for myself, nor for my two young sons who depend on me.

But the doctors at the Norman Parathyroid Center hadn’t given up on me yet, so after a long year of arguing my options with a husband who had little faith in any doctor at that point, I kept my promise to myself to do whatever I could to survive this, for the sake of our children, if for no one else.  We drove down to Florida in April 2015, and my husband and boys patiently waited, watching for dolphins out the hospital windows as I lay under a radically designed machine, the best of the best, in the hopes of capturing an image of my wayward tumor.  Eventually the technician began carefully marking a spot on my neck.  I had to lay very still, and it took everything in me not to grin, because I knew that under the crisscrossed lines lay the tumor that for years had been destroying my body, my mind, and almost, my will to live.  It had finally been found, and the experienced Dr. Lopez and Dr. Politz deftly and quickly removed it at last.

Now when I glance in the mirror, I often pull my hair aside to see the slender scar trailing steeply up my neck.  This mark of beauty reminds me that my days are no longer defined by suffering.  I am still healing, and the healing is slow, some of the damage done to my body still causing pain and frustration.  I will always have Hashimoto’s, and I may never be 100%, but now when I wake up in the morning, the first thing I feel is a sense of hope, rather than relentless pain.  And that is only the start to my day.  This last week I sat at my laptop for hours on end, able to fully concentrate as I worked on edits for a novel that has been accepted for publication.  Though the path is steep, and rarely easy, I am on my way.

Not everyone is so blessed, to be able to point to a place on their body and say, “I survived this.”  But I am, and that delicate scar that represents so much—the life I have yet to live; the dedicated, amazingly talented team of doctors that saved that life for me; my own sheer will and determination to fight the odds and the naysayers; the journey I took, if not always bravely, with my children ever on the forefront of my mind—that scar is my favorite beauty mark, one I will always gaze upon with utmost joy.  I am ever grateful to be able to share this with you, this and many more stories to come.

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