Sweet Readers …we are reposting the early days of this blog in order to share the whole story. We’ve written so much about Lyme this year (and necessarily so) that fellow Lyme warriors might not know that the Lyme diagnosis came at the end of
a long, wild diagnostic ride that included discoveries of immune deficiency and liver disease. Well, TWO liver diseases. And even today, we’re not quite sure which came first, though we have a hunch. Even as I write that I realize I sound very, very sick. And sometimes I am…but to look at me you wouldn’t know, because so far my illness is invisible. And while that causes problems for “zebras” who need more time off than healthy colleagues. It doesn’t for me, because I work from home, and my hoss believes me when I call in sick. (Husband/Boss.) If you know my whole story, I JUST FOUND MORE BABY ANIMALS: a website called zoo borns!! Just can’t watch the news anymore. Can’t do it. So I look for baby animals, at least until the salmon are running.
I’ll get back to new content in a couple of days, but for now, here is the story of how I went from one disease to three:
This the second part of my series on how we arrived at a diagnosis of autoimmune liver disease after months of misery and misinformation. You can find part 1 here and part 2 here but let me back up for a bit.
After months of deliberation, Jim and I had decided that I needed to resign from my job in Children’s Ministry. I no longer had energy for both job and family. I needed time and space to figure out my next steps, and I needed to get well. I composed my letter of resignation, and despite the fact that I woke up feeling like absolute dirt, in mid-October I took my rubber legs and my sweaty self to work in order to resign. ( I still assumed that I was just suffering from the effects of my recent surgery, but a gnawing thought was growing that something else was very wrong.)
I was standing in my office with my assistant, Elizabeth, waiting for the meeting with my boss (to hand in my resignation) when her voice started trailing off and the floor suddenly jumped up. To use official medical terms, “I done fell out.” I accepted my boss’s offer of a ride home from my prone position on the floor, and proceeded to resign. In the car. While he drove me home. (I hear that he is still in shock from the way I resigned…but I think he probably believed me when I said I had become too ill to work.)
Hitting the floor probably saved my life. Or something dramatic like that. The ensuing trip to the Emergency Room revealed significant dehydration, low potassium, and a last minute aside from the attending physician: “By the way, your liver enzymes are a little high. It’s probably nothing, but have your GP check them in a few weeks.”
That was October 8th. A week later, our kind-faced family doctor assured me that it was “probably nothing,” but re-ran the liver function tests, along with a few others, to rule out liver disease. Except – they didn’t. I was referred to three different specialists to determine why my bone-specific Alkaline Phosphatase was so high. My chief complaint was the daily battle with UTI’s and kidney issues, and we felt like the elevated liver function tests were probably related to the chronic infections.
October , November, and December were ….just awful. I was living with daily, severe pain. Life got smaller and smaller as my health declined, centered only around doctors’ appointments, and saving what energy I had to be able to interact with my family. Making dinner was an accomplishment. If I made dinner AND managed a shower, I was nailing it.
I began having really bad indigestion, but I actually never gave it much thought… I was so preoccupied with getting to the bottom of my bloodwork and finding a cure for the UTI trainwreck, that it never occurred to me that the indigestion was a sign of the actual problem. I didn’t even bring it up with my doctor during one of our (weekly) visits. Reassuring me that it was still “probably nothing” he referred me to yet another specialist – this time, a rheumatologist, for a work up. And we finally got some answers.
She ordered more bloodwork (to rule out lupus), scans of my abdomen (to check for tumors,) a full-body nuclear scan (nothing there), and called three days later – on a Friday – with the news that whatever was wrong was absolutelyin the liver. She urged me to seek care right away, and was worried that I could be dealing with blocked bile ducts. She was shocked that I wasn’t having gallbladder symptoms based on my labwork, (remember, I hadn’t mentioned the severe indigestion) and was concerned that a weekend stood between me and the ability to get care.
This round of labwork came back on the same day as the results from the imaging ordered by my urologist. She called 10 minutes after I got off of the phone with the rheumatologist to say that, while there appeared to be nothing wrong with my bladder and kidneys, my liver didn’t look good, and showed signs of hepatitis. We were finally converging on a diagnosis, and it seemed bigger and scarier than it did when I first fainted at work, and got the first inkling that my liver enzymes were elevated. My hunch that something was very wrong seemed to be coming true.
That day I found myself wishing life had a “pause” button. I was talking to my doctors from a stairwell in a Maryland hotel, where we were staying to cheer on our son as he competed in a critical swim meet. It was between morning and evening sessions, and I would step out of the room to get more bad news, and then text the results to my husband who was hanging in the room with Dylan, who wasresting for finals. Unable to find that elusive pause button, we hit “play” and headed back to the pool, channeling our anxiety into really
profane loud cheers for our boy.
And because this is getting long, and you need to pack lunches or walk the dog – I will pick this up tomorrow to share how we finally reached a diagnosis. I will leave you with a poem by Edgar Guest that I stumbled on last December, in the midst of my diagnostic limbo:
When things go wrong, as they sometimes will,
When the road you’re trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit
Rest if you must, but don’t you quit.
Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a fellow turns about
When he might have won had he stuck it out.
Don’t give up though the pace seems slow
You may succeed with another blow.
Often the goal is nearer than
It seems to a faint and faltering man;
Often the struggler has given up
When he might have captured the victor’s cup;
And he learned too late when the night came down,
How close he was to the golden crown.
Success is failure turned inside out
The silver tint in the clouds of doubt,
And you never can tell how close you are,
It might be near when it seems afar;
So stick to the fight when you’re hardest hit –
It’s when things seem worst that you must not quit.
More about Jenny here.