Three hours in a big pickup truck on state highways instead of interstate is NOT the way to get a zebra to an important doctor’s appointment. HOLY FUCK was it painful! Every little bump, each little dip and rise in the pavement, all the quick jerks that happen with an aggressive or multi-tasking driver – they all reverberated through my spine up into my head and out of my face as grunts, groans, breaths both sharply in and forcefully out, and tears that fell into the pillow I made of my husband’s coat. I swear I cried probably half the trip.
Add a thick dose of anxiety for both Hubby and myself, shitty weather (right at freezing temps with some snow/ice/freezing rain), fucking up the navigation so we arrive just in time at the wrong goddamn place, only to be told on the phone that we’ve got about twelve minutes to make a twenty minute drive or I’d have to reschedule…
I walked in to the lobby in tears and shaking, getting to the check-in counter fifteen minutes after my appointment time instead of the fifteen minutes early they requested for registration. That was a first. It’s also, I think, the first time I’ve cried in public and given zero shits about it. I never was a crier until this fucking zebra showed its face and took my Energizer Bunny life away. Not that I never cried. I did. Just not in front of people, and really, not very often. Getting scolded and mocked for crying tends to shove that activity into the same box as masturbating and nose-picking: yeah, everybody does it, but you keep that shit to your damn self. Yesterday, though, I was so relieved to have made it in time to be seen that I didn’t even register that I had a pretty sizable audience until after I’d stopped crying and found a seat. It definitely helped that I was apparently the youngest patient there – I felt a bunch of grannies sending me love and comfort. Half a Xanax helped, too.
And guess what… staff were great, and so was the doctor!! I didn’t have to teach him anything, which is a HUGE deal for any EDSer, and I didn’t have to defend my claims or beg for testing. He listened, he took his time, he did a thorough examination, he spoke to me respectfully, and he didn’t treat me like a crazy person. It is SUCH a relief just to be believed but even more so to know that your doctor actually understands your condition. It seems so common sense that a person should only see doctors who understand their condition, but that is a luxury for people with conditions whose research domains are small and still in their infancy. Most zebras I know have learned to settle for doctors who let the patient teach them about their condition because even that is better than fighting the typical fucking doctor egos who don’t know as much as they claim.
He took a couple x-rays to look for obvious issues, and the most significant thing they showed was some translational movement in my cervical spine. Basically, my fifth (I think it was) cervical vertebrae looks like figure (a) below.
It has slid forward off of the vertebrae below it, putting pressure on my spinal cord. He also suspects that my syrinx has grown more so than he suspects CCI or Chiari, but he never said he ruled those out. He ordered MRIs to check all of it, brain to buttcrack, and we’ll go from there. He already knows surgery is dangerous for me and should be a last resort, and that tells me he probably deserves to be trusted with whatever surgery I decide to go forward with.
I left feeling relieved, supported, understood, and cared for. That, in and of itself, is something to be grateful for. Hubby went ahead and called in for a vacation day at work, too, so he didn’t feel rushed to get back. He would’ve missed over half his work day by the time he could’ve gotten there anyway. We hit the local Bob Evans for comfort food before leaving town – just for me, too, since Hubby was in the mood for a Reuben. I think he finally understands just how comforting the right foods can be for a woman in distress.
*I will always love you, biscuits and gravy, scrambled eggs, crispy bacon, and hashbrowns with decaf. No matter what you might do to my body, my mouth and heart will never give you up.*
The ride home wasn’t quite as bad. It was still painful, but I think having a full belly and taking my pills helped. So did no longer being anxious about another new doctor and all the past traumas my demon likes to regurgitate all over my new hopes. She actually got shushed pretty fast yesterday, as soon as the doctor shook my hand and sat directly facing me, close enough to touch my shoulder. He didn’t go right for the file. He went right for me, and that is a powerful statement about his focus. He’s in it to be helpful; he’s not in it for the money or the prestige.
Anyway, I’ve been resting ever since we got home yesterday. I woke up today at a 5 overall pain score with a mild migraine and pockets of 7-9 pains; energy is at about 30% right now. I’m calling today a Category 4 Rest Day – I’ve soaked in the tub, showered (I always shower after a bath to actually get clean unless I’m doing an oil treatment or something), and fed myself. I’ll probably do dishes because we’re out of clean plates, but that’d be my max (that is, I’ll finish filling the dishwasher and push the Go button; pans can wait).
Everything else will wait. Today is for self-care and appreciating my new spine specialist.