triggers

It’s no secret that my 20’s were… Well, we’ll call them adventurous. Drug addiction, homelessness, abusive relationships… Not to mention surviving multiple rapes and attempts at suicide.

And then I looked around and realized if I didn’t turn my life around, no one else would. I got sober on my own, started therapy, and chose a career helping the women of my community. I met my husband at the lowest time in my life and he has been my rock through all of it. I finally went back to college. I volunteered at an alcohol and drug rehabilitation center for women with children. My life was wonderful.

When I got sick last year, I was shaken but not broken. I could get through this. I had A Plan: find a neurosurgeon, have the decompression surgery I need to get my life back, spend six months to a year in recovery. My life after surgery would go on as before.

Then, doctor after doctor began rejecting me. Treating me like I was an imbecile, less than a person. Rejecting me because of my weight, because my herniation wasn’t big enough, because they didn’t believe the Chiari was my problem (but wouldn’t tell me what they believed these crippling symptoms were).
It’s been over a year since my diagnosis and my hope is gone. The Great Plan has failed. The depression I battled all my life and thought I’d overcome has come back with a vengeance. I constantly feel as though there’s a vice around my chest getting tighter and tighter until I can’t breathe, I can’t think, I can’t make the smallest decision.

This September on my birthday marks the eleventh year of my sobriety. Getting sober was hard but after a couple of years, things got easier until getting high was the last thing on my mind. After everything I’ve been though this last year…

….I don’t want to be sober anymore.

I don’t see the point. I don’t want to constantly think about the horror of being me, being sick, being in pain. I don’t want to remember all the things I’ve lost, things I may never get back. I don’t want to look into the future and see misery, loneliness, and pain pain pain. At least with drugs I can forget, dull that pain. The craving to let go and self-medicate is overwhelming. It’s all I can think about sometimes.

And if it shortens my life span, well, I’ve got nothing good going at the moment. Maybe I’ll never do anything good ever again. I can’t even take care of myself, how will I ever get through the stress of being my own advocate. I can’t handle researching my options, finding a doctor, being rejected, and starting over again. And again. And again…

It’s enough to drive a girl back to insobriety.

Every little bit helps...

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.