What happened Tuesday morning...

In the waiting room of Dr. L's office, I told Phil I was scared. I had gotten my hopes up, thinking this time, finally, we would get some answers. Four months of bouncing from doctor to doctor, four months of pain and fatigue, four months of financial hell, four months of my life wasted because of my rebellious body. I thought for sure this was the doctor who would lead me down the path toward getting my life back. In the waiting room anxiety overwhelmed me... I was suddenly unsure. I didn't want to be let down again.

Prescience or coincidence?

The nurse came in and did all the familiar tests: blood pressure (normal), reflexes and muscle tone (slow on the left side), eye movement (jittery). She went over my history, meds list, MRI results. Then she left to fetch the doctor.

When he came in to the room he seemed nice enough. The first thing that pinged my alarm system was the fact that he didn't examine me at all. He didn't even have my information in front of him. That made me feel like he had already come to a conclusion without bothering to SEE me. He told me lately he had been having bad luck doing decompression surgeries - someone lost vision in one eye, two others were in a near coma for days after the surgery, others had problems with spinal fluid leaks at the surgery site. In my frustrated mind I thought, "Well maybe you're just a shitty surgeon."

The second alarm bell came when we discussed why I've had three MRIs in the last four months. I told him I had the first after my urgent care visit, the second was Dr. Hahn's idea, and the third was ordered by the neurologist because Dr. Hahn wouldn't order a spinal fluid flow MRI. Dr. L asked why I needed a spinal fluid flow MRI and I explained how Chiari Malformations can cause a blockage of spinal fluid flow from the spine to the brain and back. He said, "Oh, I didn't know there was a test for that." I'm sorry, you didn't know when a CINE MRI would be appropriate??

Then the bombs began to drop.

"You would never forgive yourself if you had the surgery and the complications were worse than the benefits." (I have been clear with every single doctor: if there is another way to feel better and get my life back, I'm all for it. I do NOT want to jump into surgery unless it's necessary. Yes, I'm aware it's brain surgery. I'm not stupid.)

"Not to be flippant about it, but have you thought about having gastric bypass surgery?" (I'm sorry, what? What does my weight have to do with my brain falling out of my skull? And I thought you just said I'm a poor candidate for surgery... Isn't gastric bypass surgery a major surgery?)

 "I am feeling gunshy about decompression surgeries, lately." (Your problem, not mine. If you knew I was coming in because of a Chiari issue, you should not have taken me on as a patient.)

"I can only evaluate your anatomy and I would call your Chiari mild at best." (Excuse me? I'm having crippling headaches multiple times a day, dizziness, my vision is still fucked... If it's not the Chiari, in your opinion, what is it and how do we fix it?)

"Oh, I have NEVER written someone off as permanently disabled because of a Chiari Malformation." (...so I'm making up all my symptoms? My family is in financial ruin because I'm making this shit up? I've lost amazing opportunities because I'm blowing this out of proportion? And I'm not asking about permanent disability - just long enough to figure out what this is, fix it, and get back to work as soon as I can.)

And after saying I'm not a good candidate for surgery, that my Chiari is mild, that he wouldn't do surgery on me because of the risk of complications being greater than the benefit, THE KICKER:  "It would be different if you were a hundred, a hundred and fifty pounds lighter. Then you would be a great candidate for surgery."

Oh, okay. I see. You're fat shaming me. You're covering your ass because you're afraid that because of my weight I'm incredibly unhealthy, eat like a pig, laze about because I can... Then he told me, "There's nothing wrong with seeking a third opinion. Have you gone to Seattle yet?"

SERIOUSLY!? Just come out and say it. You don't want me as a patient because of my weight.

I cried and asked him what I'm supposed to do. I can't drive, I can't work, I am in incredible pain every single day and yet I'm "not a candidate for disability." I can have the surgery and possibly have complications, or I can not have the surgery and be sick for the rest of my life, or until someone takes the time to find out definitively what this is and finds a way to make it stop. No one is willing to step up and take action simply because I'm fat.

Dr. L was my last hope and he's sending me back to my primary care physician because he's a chickenshit bastard. I can't afford to go to Seattle. I can't drive (what if my leg stops moving in the car?!) so I can't work. My headaches are off the scale. I'm depressed. I'm tired all the time. No one will fill out my disability paperwork (not state disability, my work's long term disability program) because they don't want to be held accountable for it, and they don't want me to be their patient.

As we left the office I let out a howl of despair and slumped against the wall. I couldn't speak. I couldn't think. I cried and cried and cried, through the halls of the hospital, out to the car, all the way home. We got home, I kicked off my shoes, and Phil tucked me into bed. He sat there silently squeezing my hand as I cried. After a few minutes he said, "I don't know where we're going from here but you need to know I'm going with you. We're going to get through this together."

I know he's trying. It's a lovely thing for him to say. I just don't see how we can move forward. We've gone through all our viable options. There's nowhere to go from here. I can't keep going from doctor to doctor to doctor only to be told they're not comfortable with having me as a patient. I can't afford the copays, Phil can't afford to take the time off of work.

The only thing I can do is wait until my next PCP visit, tell her what happened, and pray she's got some idea of what to do next. Until then, I'm going to be holed up in my room. There's nothing left to say.