All that got cut short with a migraine that wouldn't stop. I'd had migraines before, but this was getting epic. I worked through the pain most of the time, and didn't keep track of how many days they lasted. That was just life. Life was hard. This time was different.
It drug on for 4-and-a-half years with little reprieve. Sometimes a medication would work for a month, then suddenly stop working, never to work again. I struggled going to neurologists and pain specialists, until one symptom landed me in a cardiologists office. My heart passed with flying colors, but I wasn't responding to the stress tests well. That sent me to an endocrinologist.
I will never forget that man, because he saved my life. I still remember his exact words: "I don't think you have this, but I'll run the test just to set your mind at ease..." He was true to his word. A few days later I got a phone call: "Please hold for the doctor..." I knew we'd finally found some answers.
It turned out I had adrenal insufficiency, a rare disorder that affects the body's ability to regulate heart rate, blood pressure, and stress response (including inflammation, wound healing and infection response). Normal levels for a person my age was between 12 and 14. I was at 2. "We need you on medication yesterday," the doctor told me, "I don't know how you're not in a coma."
He went on to test my pituitary at my request, "because I was wrong before!" he laughed. I'd never met a doctor like him. It was such a relief to finally be given the benefit of a doubt and to have those hunches lead to real, substantial answers. I was right again. I had an even more rare disorder: ATCH deficiency. My pituitary gland, the "master gland" of the body, wasn't working properly.
I was able to get in with a good pain specialist after that who took me through every treatment and protocol for the migraines possible (because they were still going on despite treatment of the adrenal problem). It took several years, but eventually she got me into the Occipital Nerve Stimulator experimental study, and that device was finally able to bring the cycle to a halt, and I was able to come off my pain medication.
During that time, my thyroid also gave out, also due to my pituitary, and I continued to have endocrine problems. Looking for a specialist who might be able to merge the seam between my migraines (neurology) and my pituitary problems (endocrinology), I discovered a specialist type known as a neuroendocrinologist and got referred to him.
There, after all the strange patterns of symptoms and changes, came the really bad news (as if the rest wasn't enough!). Autoimmune hypophysitis. I had to sound it out. AU-to-IM-mune HY-po-phys-I-tis.
"What the heck does that mean?"
"It's a really fancy term for 'your immune system is attacking your pituitary.'"
We did a full panel for other autoimmune diseases, and I also tested positive for Sjogren's Syndrome (SHOW-grins). That's when your immune system starts attacking the moisture producing parts of your body, including the lubricants for your muscles and joints. As such, it's common for Sjogren's to morph into other autoimmune diseases like autoimmune thyroiditis (a fancy term for 'your immune system is attacking your thyroid'), rheumatoid arthritis, or lymphoma (cancer of the lymph system). Or, as in my case, an extremely rare pituitary disease.
I've had a lot of really scary experiences in dealing with my chronic illness. I battled MRSA for a year following a surgery. I've experience chronic levels of pain most people don't even know exist. I've beaten the odds many, many times over. And I'd be lying if I said I came through it unchanged in who I was.
Elizabeth Kubler Ross said, "The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss and have found their way out of the depths. These people have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness and a deep loving concern. Beautiful people do not just happen."
I may not find my way out of the depths physically. That may not be possible. But I can work to keep my spirits above my circumstance. To this end, I'm taking the wisdom of an old fellow Missourian, Mark Twain. In chapter two of Tom Sawyer, the boys are forced to spend their afternoon whitewashing a fence instead of going swimming. But Tom turns the situation around, making the work something to be envied. By then end of all his talk, he's got all the other boys convinced that it's such a special, envious position that they all end up doing the work for him!
Now, I'm of no mind to make folks do my work for me, but Mr. Twain makes a good point with Tom... if I can make this look awesome, then I'm someone to be envied. And if I can make people envy me with the problems I have in my life?
Epic winning. ^_^
Thanks for stopping by...
with her B.A. in English from Saint Louis University.
She grew up in St. Louis, Missouri, but made her career in Seattle, Washington
working for such companies as Microsoft, Nintendo of America
and GiftCertificates.com. In 2010 she moved to Colorado for
her health, and there she currently resides.
