For months and months now, I've not been well at all. I'd been losing ground at physical therapy--which had been keeping my Migraines at bay--and I could not shake this crushing fatigue. Then the deep bone pain and muscle pain started, and then lower back pain, too. And all along--for months and months--I'd been feeling so unlike myself. Confused at times, indecisive at others, still other times, I'd search for a word in the middle of a sentence while talking. (So embarrassing.) I felt like I was in a fog all the time. Writing became such a chore; reading, an impossibility. I'd also seen my eye doctor back in December for severe dry eye and gotten on a prescription for that, with his suggestion that I get a doctor to test me for Sjogren's Syndrome once he heard the rest of my complaints.
That's where and how my Odyssey began.
I won't bore you with all of the details. My quest took me from the eye doctor to dear Dr. B., my neurologist, who ordered some labs to test for Sjogren's and a few other things. From there, I went on to a waiting list at a rheumatologist. All the while, I was losing more strength and stamina. Pain kept me from being able to sleep and carry on with my normal life. My weekly grocery store trips became my last vestige of normalcy, and they cost me dearly in terms of their aftermath of pain and exhaustion. Many times, I sat in the parking lot, waiting until I could bring myself to drive home, leaving heavy items in the car for Rick to bring in. Putting things away took forever as I rested often.
The rheumatologist's initial diagnosis was palindromic rheumatoid arthritis and possible Sjogren's, and a couple more labs were done. No results were conclusive. I had a brief respite after a steroid blast, but another try a month later when the pain roared back gave me no relief. In desperation and in debilitating pain, I contacted a friend who is a sonographer for the Cleveland Clinic. She pulled some strings and got me in to a top rheumatologist there.
In a two-hour consultation, this doctor took an extensive history and then narrative of my condition: its origin, development, symptoms, and affected areas. Then she examined me and asked me about my lifestyle, diet, and habits. Then she ordered twenty-two lab tests. And she identified at that moment what she thought it could be, something simple and, most importantly, reversible, although it would take some time.
The labs confirmed a couple things I already knew: one, that I have a lousy immune system; two, that I do not have TB or any thyroid issues. But the labs also confirmed what this doctor suspected from my symptoms and examination: my problem is not rheumatoid arthritis--those factors came back negative. So did Sjogren's. My problem is a severe and prolonged Vitamin D deficiency.
It's astonishing to me that something that seems so small and so banal-sounding can wreak such havoc. I was being tested for heavy metal poisoning, aluminum poisoning, arsenic, Lyme disease, even Parvo! They were testing my blood for markers indicating lupus, MS, rheumatoid arthritis, and other frightening things. But they all have some of the selfsame symptoms in common, and let me assure you, these symptoms are frightening to endure. I am beyond grateful not to have those illnesses, and I look forward to the end of my misery, whilst sufferers of some of the aforementioned illnesses must only manage theirs.
My deficiency is such that it will take months to recover my health. I am currently megadosing twice a week (50,000 IUs) for two months, at which time I will be retested. The doctor is confident that I will recover completely from this, but has told me that I will need to supplement Vitamin D3 for the rest of my life.
I can do that.
In the meantime I have to work very hard at Being Patient. That, as many of you know, is not my gift. I want My Life back. I want Me back. I want my brain back. I am tired of being tired. I am tired of not being able to Do Anything, especially the Things I Love. And I am so very, very tired of Pain. My heart breaks for those who must live with it as a Constant Presence Lifelong.
I hope I find someone here when I can finally return. And I hope I am finally Me when I do.
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