A weekly dose of dauntlessly dealt reality from the What It Is Wednesday Blog Carnival…
Fifteen years
(technically 45)
Twenty specialists.
Sixteen modalities.
Thirty-two diagnoses.
Countless labs, scans, tests, prescriptions, supplements, cleanses, detoxes.
Thousands of dollars.
One hour.
Those are hard calculations, and I’m not a linear person. There’s a point, though, that a thing drags on well passed its welcome, and I have to notice it isn’t getting better. I have to do the accounting. What perpetually shocked me in all this time is the number of doctors who didn’t.
In the teaching medical community is the phrase, “When you hear hoof beats, think of horses, not zebras.” It means look for the obvious diagnosis, and that’s all.
Fifteen years of hoof beats.
One hour
In October, in a riot of last-ditch angst, I saw a new neurologist. I spent one hour with him, and in that time he not only nailed the diagnosis that encompasses the vast majority of every symptom I’ve had in the last fifteen+ years and really, since my youth, he also quieted a long restlessness I’d accepted as normal.
I cried.
Right there in his office, I sobbed, because every cell in my body knew he was right. Because I felt a weight lift from my shoulders. Because he listened. Most specifically because he said, “You’re a nice young woman, and I’m sorry you’ve been in so much pain for so long.”
He said it on purpose, likely because he deals with a lot of un-diagnosable patients. He deals with people, particularly women, who have miserably fallen through the cracks of the system for years. Over and over he hears stories of other doctors missing the mark. He knew exactly what to say to tap into the fact that I needed to hear someone acknowledge this is real. This has been happening, every day. I needed to hear a doctor acknowledge that fact.
I needed a doctor to honor my humanity, not just diagnose my condition, and he did both.
Past all the angst, anger, blood work, and scans, are Postural Orthostatic Tachycardia and Ehlers- Danlos Syndrome. Neither will kill me, they will just make the everyday fairly unpleasant. There’s no cure, no treatment, only suggestions–most of which I’ve already been doing for years.
So, nothing is different, except that it is. I now know what I’m dealing with. I know what my boundaries are, and what I’m up against to enforce them. I can’t say that I’m enthusiastic about it, or that I have a great attitude with how to take steroids and to go forward.
I can say now that I was heard. This time.
If You Want to Be Real on your blog, visit the inaugural page —http://www.soulintentarts.com/what-it-is-wednesday/ and follow the instructions there to share your reality with the world! Read other blogs in the carnival, below:
I’m really sorry you had to go through all of that… <3
I am glad you finally getting a diagnosis that fits. I hope it makes your life that little bit easier.
So sorry for the years of not knowing. Hugs for the struggle and well wishes for the path ahead. Xoxoxo
I ache for you – and I wish I knew what to say right now. Sending you blessings, warm hugs and lots of healing thoughts.