I suppose I should say something...

Seattle rejected me because my herniation was too small. This, coming from the surgeon who believes in a "Chiari 0" - symptomatic with zero herniation. Needless to say I felt my world unravel.

I've spent the last few months fighting severe depression and anxiety. Seattle was The Plan. I couldn't process the thought that I would have to start all over again.

Through some therapy, pouring myself into art projects, and a medication adjustment I'm... well, I guess I'm better. If by "better" you mean "not on the verge of a major meltdown most days." I'm still in pain. I've resigned myself to using a wheelchair when needed, although I fought that decision tooth and nail. I have at least one doctor on my side and he's promised to help me find the care I deserve. We're sending my information to Dr. Oro in Colorado next. I spoke to the receptionist there and she said, "Even if he determines you're not eligible for surgery, we will still put you on a care plan. We won't leave you drifting out in limbo." That's what I need. Someone who knows this disease helping to get me on a path to healing.

In three weeks it will have been one year since my diagnosis. I look back and wonder at how naive I was. Truly, I believed I would find a neurosurgeon immediately, have the decompression surgery I need to get back on my feet, spend a few months recovering and then get back in the game. As the weeks and then months rolled by, my hope and positive attitude were whittled away. I miss my old life. I miss being active in my community. I miss having friends. I miss driving my car.

There's still some hope left in me, I guess. It's hard to see some days. All I can do is put my head down and hope this misery ends sooner rather than later.

And then the good news...

Finally! The company handling my long term disability finally made the decision to pay out benefits for the past couple of months! They're also paying my salary at 60% - much better than the 40% I thought I would be getting. This means we will be able to keep our home and have food on the table. We may not be able to pay all of our bills but we're safer than we were a week ago.

That said, we're still waiting to hear back from the neurosurgeon in Seattle. Speaking with some patients of his on the Chiari boards, I found out he is extremely busy and may or may  not accept me as a patient right now. If we don't get in touch with him, our next option would be to submit my medical records to a specialist in Colorado. I can't fathom going that far away from home to have a scary surgery and then travel all the way back to Washington... Keeping my fingers crossed for Seattle.

I've been thinking pretty hard about this surgery. Yes, there is a risk of complications. It's brain surgery. Do I risk it? Or do I continue to live this way: in pain, depressed, watching my life pass me by? There's no good answer and no promises that I'll be 100% healed either way.

I'm still scared but at least the weight of finances has been taken off my shoulders.

Where I Am...

Having an illness, a disease, or a disability naturally causes a lot of problems.  There are primary obstacles: things that are foremost in your fight against your own body. Physical and emotional pain, awful confusion, all the stages of grief... All things I've subtly (or not so subtly) experienced and battled these past six months. And then there are the secondary complications that, somehow, make the whole thing worse.

Isolation. Physical, emotional, and spiritual atrophy. Blow-ups with family or friends who don't understand. Being thrown so far from what you thought was your path you are trapped in the bramble bushes. Fear that you are making costly, irreparable mistakes about your care, your family, your future so you take the cowards way out and decide not to decide.

2013. I'll be spending New Year's Eve with my husband and some friends. I hope you all ring in the New Year with loved ones, happiness and hope for the future.

Obsession...

Before this happened, Phil and I had been talking about starting a family. He's never been interested in having kids before so I was thrilled when the conversation turned to the possibility. Being sick and not having prospects for getting better any time soon... I feel this terrified push to get pregnant NOW. Sensibly I know it's ridiculous and dangerous. In my heart, though... It's just one more thing I see slipping away from me, one more dream shattered. We didn't have much of a chance before, honestly, and now it's unlikely to ever happen, and the longer we wait the more infertile I become. Still, I obsess about it. We talked about it at dinner last night and Phil confessed he doesn't want us to have a baby because the lion's share of the work would fall on him.

He's right. He's right and I never thought about that and it crushed me to hear him say that.

This whole ordeal has been hard on him. I'm not the only one afraid and in pain. It's not fair that he has to do this. I offered to move in with my mom so he could move on with his life... He said that wouldn't benefit anyone because he'd be worried about me the whole time. I still think it would be better for him, even though it would cement my "AH KILL ME I'M IN HELL" status.

My days, my nights...

I hear what people are saying. I'm not deaf, nor am I blind. I see those Facebook posts, hear conversations that weren't supposed to reach my ears. It hurts to know people think I'm faking this or worse, blowing it out of proportion for the "benefits." What's beneficial about getting certified letters from your mortgage company because you're so far behind on payments? What's so great about knowing you have no money for even the Tiny Timmest of Christmases? Not having an income and being locked in your home day after day gets old fast.

No one but Phil sees my reality, so the grumbling is understandable. I went from independent, hard working, and ambitious to withdrawn, irritable, and contrary. They don't see my days are filled with anger, my nights are filled with fear.

Hiding my negative emotions was a necessity during high school and over the years that's been my default mode. It's hard to open up about my struggles but I'm trying. When this started, I thought I would find a doctor, have my decompression surgery, and be back to finish school and build up my business in a couple of months. The longer this goes on - and the more I get rejected by neurosurgeons - the more I see my dreams slip away, the more I lose the will to keep fighting.

I'm in pain, all day, every day. I don't get a break from feeling this way. And I'm not just losing the obvious things like graduating and starting my business. I'm afraid the longer we wait to find a doctor and get this surgery done, the greater risk there is that the damage done to my body is permanent. I'm afraid there's something more wrong with me and I'm going to lose my ability to ever be independent or worse. I know our chances of having a baby, slim to begin with, are all but gone, and who would let a woman who can barely get out of bed each day adopt a child? Especially now that we're drowning in medical bills. My home, my prison and my safe place, is no longer mine, either. I don't see my mother-in-law making plans to move into a place of her own and I worry the longer she stays, the more she settles in, and the harder it will be for her to move on.

The worst thing, though, is the fear. I've been having issues with anxiety over the last couple of years. Now the further the sun sets, the more I'm afraid. It's so weird. Sometimes I can't put a name to it - I am terrified and either I don't want to or can't explain why. Sometimes I know why but I can't figure out how to NOT be afraid of it. There are times when I want to let my old addict self drown that fear in pills, booze, whatever I can to stop, stop, STOP feeling it. There are times when I wonder if dying wouldn't be such a bad idea. (Don't call the cops. It's a visceral reaction to all this BS.)

That's my life now. Pain, anger, fear. There are some high points - when someone picks me up and takes me out for a few hours. Phil doing everything he can to make me comfortable while we wait for answers. My PCP's constant encouragement. Mostly, though, it's me and my thoughts and my broken body. Things no one can relate to and that's okay. I'll keep living day by day and hope things'll eventually get better, even though positive thinking is not my strong suit at the moment.

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.

The Stars... Are Just Old Light

Every fear, every disappointment, every angry thought... They get heaped on my heart one after another until I'm staggering under their weight. Until recently I think there was still an element of disbelief. This couldn't be happening to ME. Not me. This is someone else's life, not mine. Through all the tests, diagnoses, misdiagnoses, arguments, concessions... I was determined to grit my teeth and get back to living my REAL life as soon as possible.

The thing that brought me to my knees was the internet bill.

Phil casually mentioned the internet was going to be shut off for lack of payment. It threw me off guard: what do you mean, lack of payment? Why don't you pay it? That would keep it from being shut off, right? It didn't sink in that what he meant was we couldn't afford to pay it. We can't pay for my prescriptions, mortgage, utilities, food and gas, let alone doctor's bills... And his decision was to let the internet go and get caught up with his next pay check.

No. I couldn't accept it, fought the implications. We are not the family who has to choose between medicine and food, doctors bills or phone service. That happens to poor people, old people. We both have good jobs with decent medical insurance! How on earth could my hard-working family have to choose which services get shut off because we can't afford to pay them? This isn't right!

I have noticed I'm withdrawing more and more from everyone, everything. Stopped reaching out to support systems. Stopped painting. Stopped leaving the bedroom for long periods of time. Phil asked if I was depressed. My response was, "Are you crazy? Of course not!"

Now I'm resigned. Everything is out of my control. I keep asking Phil if things will ever get better. He says they will, we just have to keep going.

How long? Someone said to me, "At least it's only been four months, not four years."

That's the problem. I don't know if it will be a few more months, or a few years, or a few decades... Or if I'll never get better.

It's no wonder I'm depressed.