Thursday, March 23, 2017

The day I became a zebra.

"When you hear hoof beats, think of horses, not zebras."

I remember it like it was yesterday. I was at yet another rheumatologist appointment hoping for some sort of answer and direction.  Like usual, I begin to hear that all my labs for the specific antibodies they are searching for all came back negative.

Normally, people think this is a good thing. But when you've been sick as long as I have, you are craving answers. Hearing 'negative' just means that you start to question to yourself- if you are really sick.  I mean, are you? Yeah there's definite abnormalities to your bloodwork which is why your rheumatologist is so determined to figure you out.
But maybe you start to think to yourself, that maybe everyone has some abnormalities and you are just overthinking how you feel. Just suck it up. Everyone is as exhausted, everyone hurts this much.

As she listened to my lungs and I focused on taking deep breaths and fighting to keep a super brave face on, she suddenly stops and quickly returns to her computer. I sat there, with my heart in my foot and my insides feeling the feeling of defeat that I had become so use to feeling, she pulls up one of the test results. "Well there was something actually."
One of the labs that had to be sent away to a research facility did not find what it was sent there to find.

"They found several unknown antibodies" related to connective tissue disease.
I felt myself wane sarcastic as I replied "You mean, like an 'Ashley' disease?"
"Yeah, pretty much" was the response from my rheumatologist.

I felt slightly irritated as it was not the first time I had heard this from friends. And here my doctor has just told me I have something that present day technology and medicine does not know what it is.
I became a zebra in that very moment.
What does that even mean?

"When you hear hoof beats, think of horses, not zebras" is an old medical saying meaning, usually it is not a rare unknown diagnosis so don't jump to that conclusion. Its usually a horse- not a zebra walking in. I was the zebra. Doctor after doctor would look at me, look at my labs and shake their heads in complete confusion.

Finally the day came when I got to be seen by a real life Doctor House and his panel of doctors and assistants. They took notes, looked at my labs and talked back and forth to each other of their ideas.
"She definitely has autoimmune disease."
"Yeah, a crazy autoimmune disease."
My husband dared to ask the question that has been on my mind for 9 years.
"Do you know the name of it?"
A little bit of silence, and a little bit of laughter swept through the room.
The doctor replied- "You want a name for it, do you really?"
He smiled compassionately and said "The Ashley."
After my husband and I laughed he got serious and said,
"We would call it systemic auto-immune disease because I believe its affecting multiple organs." This one doesn't have a known idenity just yet.

Then one of the other head doctors chimed in said "Look, lyme disease existed long before they knew about it. It is real and was real to all the patients who had it. Just because they hadn't discovered it didn't mean they weren't very sick, all while people and doctors had labeled them as crazy."

But I am not crazy. I'm not being told I am overthinking it, have had too many tests done, or that I should not be worrying about that stuff and to go live my life.

I was told there are treatments and they want me to feel better. It won't be easy but doing nothing is not helping me and we can't continue on that road.
There was suddenly hope. Hope that while my kids are still kids full of life, love and energy in this present life that I might be able to keep up with them. Or hope that my body wouldn't hurt so bad.

They've identified the source of the problem (my immune system), they are determined to try to fix it, not just put a band-aid on it, not just throw drugs at me and call it a day.
This will be a process, this will take time, adjustments, and many more discussions.
But this something is a lot more than the nothing I was facing.

The journey continues............

Here's a little video of our journey to Hopkins:

If you know in your gut that what your doctors has told you is wrong or not making sense, do not stop trying to get answers. They are not perfect, they are not always right. But eventually you will find one willing to search a little bit deeper and try a little bit harder. Don't give up!

No comments:

Post a Comment