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Wednesday, November 14, 2012

Where I've Been

Portland, Oregon ~ November 2, 2012

Shaking from stress and weakness, I found the camera in my backpack and took this photo in Portland a few days after my surgery. It was the first picture I had wanted to take in weeks. The leaves in Portland and on the coast in Astoria have been stunning this Fall until now the rain has drummed most of them off of the trees. I enjoyed observing, but the gorgeous, bright colors were just one more scenario I hadn't felt like taking pictures of. There have been many. I have missed a lot in the last couple of years. I will explain.

To my faithful blog friends. Thank you for reading and for your kindness over the months. Thank you, every one of you.

On October 30, I had a second surgery at OHSU to correct a very serious illness. The first surgery in April only partially solved problem, and it came back. This recent surgery was completely successful. I am so incredibly grateful to be where I am today. I will be okay, although recovery may take some time. I was extremely sick, and I was sick for a long time. I'm not sure why I never mentioned it on this blog. I am not all that private about my health, but I usually wait until I have something positive to say. That may be a failing, as it leaves me feeling isolated during the hardest times. My thanks to E. for turning me on to a terrific Ted Talk video about vulnerability and connection. From this video I also found a second one by the same speaker. I recommend both of them highly in this time when perhaps many of us struggle with connection despite – or maybe in part because of – our electronic connectivity and what it often becomes.

My illness was not cancer, but benign parathyroid tumors that destroyed my lifestyle, and can eventually take a person's life if not diagnosed and removed. Parathyroid glands are not the same as thyroid, although they reside in the same place in your throat, and each affects your entire being in a different way. Parathyroid hormone regulates the calcium in your body, and calcium regulates how your muscles, bones, and nervous system work. Benign parathyroid tumors affect all of these systems. I had been sick for at least eight years and didn't know why. And then something happened at the end of May 2010. I collapsed with exhaustion, and it was pretty much downhill from there. It eventually became impossible for me to walk around and take photos.

There is no known cause for parathyroid disease and apparently no known risk factors, although I am at the median age for people who are diagnosed. One of my doctors said, "Parathyroid disease is tricky to diagnose." I think it isn't. I think the doctors cover each other's tails by saying things like this. Maybe the subtleties require some diagnostic skill, but there is a HUGE red flag that anyone can recognize. ANYONE. My doctor in Astoria overlooked it on a standard blood test in 2004, and it may have been on later tests as well. The red flag is simple, and the cure is simple. I want EVERYONE to know what that red flag is. If you are a doctor, if you are a nurse, if you are a person watching out for your own health, and if you are concerned about the health of your friends and family, you can recognize the red flag before it ruins someone's life. The red flag is this: An adult should never have a blood calcium level over 10.1. The cure is also simple. You remove any enlarged parathyroid glands. Each person has four of them, and you can live comfortably with about one half of a gland left. They are virtually never cancer. You remove the affected gland and the problem is solved. Not to frighten anyone unnecessarily, a child or growing teen can have a calcium level higher than this – I believe it may be up to 10.6. I was in my 50s in 2004, so a calcium level of 11.3 on my standard annual complete blood count should have sent me to a specialist ASAP. It didn't. Unaccountably, my doctor did not recognize the red flag. Nothing was said, nothing was done.

The way I understand it now, there may be factors such as certain medications (hydrochlorothiazide) that can bump your calcium level up to 10.2 or maybe (I'm not sure) 10.3, but even these numbers need to be checked out. The cure is minor surgery – typically outpatient surgery done by a doctor who knows what they're doing. A person in our technological age should never have to get as sick from parathyroid disease as I did. 

I'm just saying, if you or anyone you know has a high-end calcium level of more than 10.1, don't wait, and don't let your doctor tell you, "We're going to watch and see what happens." Get it fixed and you can get on with your life. 

After several painful and debilitating years and two surgeries, my problem is now fixed. I'm beginning to feel that my life may become normal again. It won't happen overnight, but I am on the way. I was sick for so long that I ended up with not only the primary symptoms of parathyroid disease, but also crippling foot problems as a secondary condition. Parathyroid surgery was on October 30. Some painful symptoms were better by the time I woke up in the recovery room. Each day I've noticed more improvement, sometimes dramatic. Finally, in the last few days I can feel even the more stubborn symptoms beginning to abate. It's a dream come true, and I'm filled with hope.

I may write more about my experiences on my personal blog, I'm not sure. I don't want to dwell on the past, but I do want people to understand that what I have gone through can almost completely be avoided. With a history of fibromyalgia – or was it really the parathyroid disease all along? Some symptoms are identical – I waited and didn't become enough my own advocate. To be fair to myself, I had gone to many doctors with symptom complaints that eventually turned out to caused by the malfunction in my parathyroid glands. They had no clue. To be fair to THEM, yes, diagnosing parathyroid disease from symptoms is probably almost impossible. There are many symptoms, and you can read more about them at Thank God I didn't have all of these, but I did have some that are not on that list. So the absolute serum calcium number on the standard blood test becomes all-important. It should have been so simple.

As I write this, I am still spending most of my days on the couch or in bed. On Monday I began to feel that I could eventually become normal again. I began to feel that I will again walk more than a few yards at a time and spend more than an hour or two a day sitting up. I will keep you posted, and I will return to blogging. You will see my progress through the photos I take, although I may return to my archives now and again for want of time or travel, or just because I like some of my earlier pictures of Astoria. I wish I had said something sooner, but I was embarrassed that my photos were becoming restricted, showing only the scenes close to home. I never knew whether I should be honest about my condition on the blog, and now I wonder why it was such a big deal.

I have made tremendous friends through blogging, and I hope to make many more. I appreciate those of you who have asked after me – both those to whom I replied, and those I ignored, feeling wordless and hopeless at the time I received your email or comment. One way to make friends is to be honest about who you are. I knew that, and yet . . . why is this such a hard lesson?

This blog is sponsored by Tapir and Friends Animal Store.


Lee Spangler said...

Great way to say hello again to your many friends. All of us know you deserve the very best and wish you so much well as your situation improves. I am excited every day for your progress.

Lowell said...

Wow, what a wonderful, warm and beautiful post. I now understand much better what you've been going through. It is a fine thing you did, sharing this information - you may have saved several people from years of pain and misery! I now I'm going to have blood calcium levels checked.

It is so nice to hear that you are returning to "normal." But in the spring you'll be able to see and enage all that "new life," and next autumn you can make a whole new portfolio of Oregon's beautiful trees changing color!

We're doing OK. It's been a difficult week but so far so good.

cieldequimper said...

That's wonderful news, I'm so happy for you!
I have been very wrapped up in my own problems lately and I'm sorry for not having kept in touch. But I'm still here...

Francisca said...

Yay! Hurray! Superb post! Sounds like it's TWO hurdles you've jumped, my friend! The physical - and I so relate to the frustrations of failure to get an accurate diagnosis - and the emotional... you've embraced your vulnerability, and from that you'll gain strength! All it can do now is get better and better for you! (You know I'm here.) XOX

Anonymous said...

So delighted to see you back! The leaf is a lovely image of change and transition. Vulnerability is often difficult, but it such a beautiful thing to be transparent and open and to allow others to celebrate and support you. Thanks so much for sharing your experience.

HoodPhoto said...

I am so glad to see you back to blogging, and am glad that you are on the road to recovery. Best wishes to you!

Ali Crehan said...

Thank you for sharing your journey. Raising awareness of lesser-known conditions is incredibly important and you should be proud of yourself for doing so. I am so glad to see you back and so happy that you are making steps forward, healthwise!

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