History repeats...

I feel lost.

Things between my spouse and I are strained. He doesn't deserve this stress, but I don't deserve some of the things he's done either. We're at a crossroads and I seem to be making all the wrong decisions.


On the illness front: still sick, still waiting for some kind of monetary benefit from work, I finally have an appointment with a neurologist but A) it's not until August 31st, and B) it will likely be a waste of time because the treatment for my disease is surgery. The neurologist will likely refer me back to the neurosurgeon who originally rejected me and we'll start this whole carnival of the absurd all over again.


In the interest of honesty I will admit self-harm has been on my mind a lot lately. Back in my crazy past (right after the homelessness but before sobriety set in) I leaned on self-harm as a way to cope with things I couldn't handle on my own. I haven't consciously physically hurt myself since Montana, six, maybe seven years ago.

Now I'm dealing with feelings I haven't felt in ages. Depression, complete misery, uncertainty, fear, loneliness, anxiety, impatience. I want people to leave me alone and somehow at the same time I don't want to be left alone anymore. I am staring down the long month ahead until my neurologist appointment, wondering how I can mentally survive until then. The physical pain is bad, yeah, but the mental ramifications are killing me.

On top of it all, I'm the maid of honor in my sister's wedding next weekend. What a fucking joke. She is expecting me to stay the night with her the night before the wedding and then stay with my folks the night of the wedding (it's a campout on my parent's property). I keep trying to explain I can't sleep in a strange place - I can barely sleep in my own house and that's only because someone loaned us a recliner for me to sleep in. I can't stand upright for more than a few minutes - how long is her ceremony going to be? I have absolutely no desire to take away from the most important day  in her life by passing out at the altar. I can't back out but I can't see a way through this that won't hurt me (physically) or my sister (feelings).


Life outside my illness is passing by so fast... Life in my painfully tiny world can't go fast enough. I am grieving for the life that I should have had. I may, someday, be able to get back there but I have a feeling this detour is going to be a long one.

28'ish days later

As it stands now, I am still sick. My job protection was one day from disappearing but I finally got my Primary Care Physician to fill out the paperwork (using the tried and true tactics of crying and hysteria). Five-to-ten days until I hear back whether or not I am eligible for short term disability. I haven't had a paycheck in four weeks and our savings is nearly exhausted.

I am still sick. I wake up with blurred vision and severe pain in my feet, hands, shoulders, head, joints, abdomen... During the day, every time I stretch, stand, laugh, cough, sneeze my head starts pounding and my vision goes gray for a few seconds. (Pretty much Gru's Rule Number Three: "You will not cry, or whine, or laugh, or giggle, or sneeze or barf or fart!")

My PCP has faxed my files to a neurologist at a headache clinic who may, MAY, be willing to take me on as a patient. If he does want me to be his patient, it can take another two or three weeks before an appointment will be available. If he doesn't want to see me, we may have to try to make an appointment with a Chiari specialist in Seattle.

Sigh.

I can't take this waiting. The stress of it is grabbing me by the ankles and dragging me into Depressionville. I feel worthless, useless. I see all my dreams slipping away from me. I'm afraid I'll never feel better. The thought of feeling this way for years, decades, scares me to death. The thought of having brain surgery scares me. The thought of dying scares me.

Even worse is the stress I'm putting on my poor husband. Phil is used to helping me with things around the house but not being responsible for EVERYTHING. He doesn't talk a lot about it but I can't help but feel it's wearing him down. (That and some personal issues we're going through.) He says this is his job, he signed up for this when he married me and no matter what he is going to be there to care for me. That makes me feel a curious mixture of relief and extreme guilt.

I just want someone in the medical community to hear my story. To believe me when I say I am SICK. To present a miracle solution that will allow me to get back to my life the way it was.

A miracle is all I ask for. That's not so hard, is it Universe?

Nightmares.

Having such a hard time sleeping. Tossing and turning. I push the blankets aside and then...

...I am wandering from room to room, looking for somewhere to sleep. Each time I stop, I see a man in the doorway, all in shadows. I find the room where Phil is sleeping peacefully and think, "Finally! I can sleep now." As I settle down beside him, the shadow-man steps into the doorway. His outline is short, trenchcoaty, ominous. I can see a faint glint of light on his glasses. With Phil beside me I find my courage to confront him. "Hello? Who are you?" His answer is lost in a stutter that, for some reason, fills me with terror. I start yelling, "No! No! No!" I look down at Phil, begging him silently to wake me up...

..."It's okay, it's only a dream!" I wake up screaming no, no, no. Phil is gently shaking me, telling me it's okay.

I'm never sleeping again.

Holding Pattern

It has been almost a month since I got sick. Well, sicker.

Try again.

It's been almost a month since I got so sick the urgent care doctor made me sign a promise not to drive or work until I got cleared by the neurosurgeon.

A month of waiting. A month of laying in bed, staring at the phone. A month of learning I have truly amazing, kindhearted, patient and loving friends and family. A month of frustration, not-so-surprising lows, self-discovery, arguments, irritation, gratitude, tears, attempts at patience, failure at being patient, love and grief.

A month of being sick. Doubled vision, fatigue, daily headaches, nausea, insomnia, mood swings, and swollen feet, hands, joints. Oh, and pain. Can't forget pain.

A month of wondering what I'm supposed to be learning from this. A month of wondering why me? A month of being bounced from doctor to doctor and a month of no doctor helping fix my poor, broken body. A month of being afraid that our money is going to run out before my short term disability kicks in. A month of wondering if it was a mistake to buy our house since I don't know when/if I will be able to work again.

A month of the Binding of Isaac, VideoGameCarnage, TheHeartless, MangaMinx, NorthernLion.

A month of painting, stripping, and repainting my nails.

What comes next? More waiting. More Isaac. More nail polish.

More waiting.

I'm so very tired of waiting.

Like a fifteen year old with a crush...

Staring at the phone, waiting for the neurosurgeon's call. Waiting for my primary care doc to call. Waiting for someone to remember I'm out here in limbo. It's hard enough being sick, but to be put on the back burner by the people who can do something about it... It's disappointing. It's frustrating.

I have been learning as much as I can without knowing anything at all. Researching the best doctors, support groups, what the surgery could look like, recovery times. I crave order and preparation but there's not a lot I can do until I get that call.

So I go back to staring at the phone...

Grinding to a halt.

I have started, erased, restarted, re-erased, and started this post again about five times now. I want it to be honest but my natural defense mechanism (making a joke, deflecting seriousness) keeps me from just saying what I need to say.

Stick to the facts, ma'am.

Fact: last week I felt sick. Seeing as how I have several health issues, this was not surprising or unexpected. What made me pause was when I woke up with doubled vision. That's when I decided to play it safe and go to the urgent care.

Fact: MRIs are 360 degrees of terror. The procedure AND waiting on results.

Fact: I have a cyst on my brain that may or may not be anything significant, and a congenital brain malformation that definitely is significant.

Fact: I am no longer allowed per doctor's orders to drive or work until I get cleared by a neurosurgeon.

Fact: the neurosurgeon's office doesn't care that I can't drive or go to work until they see me, and will be reviewing my file for up to three weeks before I can be scheduled for an appointment.

Fact: my short term disability doesn't kick in for two weeks. Two weeks of missed paychecks...

Fact: I'm pretty freaked out. The money, the possible surgery, the time out of work, the fact that I was just getting my business off the ground, the fact that I just found a wonderful place to teach my classes, the fact that I have one more quarter of school to go and I don't want to jeopardize graduating from college...

Fact: I seem to be doomspiralling but I'm hiding it pretty well.

In truth, I don't know what to do. I would like to spend this "free" time getting my house in order, polishing my class itinerary, finishing the multitude of projects I've got going but I simply can't. Physically, I can't stand for more than a few minutes without my head starting to pound. I'm tired, I can't see straight, and my body is getting in the way of me doing much at all. Emotionally, I can't concentrate. Simple tasks take a lot of thought. I went from barreling headlong through life with jobs, volunteering, school, being a new wife... to a dead stop. It's totally disorienting.

I hate this and I hate telling people about it. I don't want pity, I don't want people to think I'm doing it for attention, I don't want to be accused of making it all up.

And I loathe that I have to put my business dreams on hold because my brain is too fat for my head.