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.

...or not.

So. News. Per the radiology report:

My herniation (listed this time as 6 mm when previously 5 mm - chalking that up to human error) is more consistent with cerebellar tonsillar ectopia than with Chiari. According to what I've read though, the only difference is the ectopia is smaller and asymptomatic, while Chiari is larger and sometimes symptomatic. I guess I don't understand the difference.

Very mild disc degeneration that has nothing to do with anything.

The study showed no abnormal CSF flow BUT my posterior CSF space is visibly narrowed and there is an isolated "foci" (hah, big words) of hyperintensity in my left side brain. According to the report this could be from migraines (possibly), diabetes (don't have it), hypertension (not sure if they're talking blood or brain, but I don't have high blood pressure), or vasculitis (not a clue).

They also noticed my thyroid gland was odd: "parenchymal volume loss" is the term they used. Hashimoto's came to mind but I haven't researched it enough to know if that's a possibility for me.

Back to square one. Again. There is *something* neurological going on, but my PCP is just as clueless as I am now. She doesn't think it's something surgical, I can drop Dr. Hahn (hooray!). Multiple Sclerosis was suggested but I refuse to let myself think about it. Next step: call neurologist and make another appointment to be poked, prodded, and squinted at once more. Square one. I hate square one.

Some answers?

Tomorrow morning I have an appointment to find out what the results of my spinal fluid flow MRI was. Thinking about it leaves me breathless: what if they find something abnormal? What if they don't?

If my spinal fluid flow is blocked, it likely means I'll be heading to surgery soon. Brain surgery. If there's not a blockage, we are back to square one. All of my symptoms appeared mysteriously out of nowhere, with no explanation, and no way to resolve them.

The past week has been stressful. Personal issues, relationship issues, living space issues, not to mention my mystery symptoms worsening. A couple of days ago my left foot stopped moving. Just stopped, for no reason. I could feel my foot - it wasn't "asleep." There were no pins and needles. My foot felt a little cold, but that was it. I tried to move my muscles and they simply did not respond. It lasted about five minutes, but it felt like an eternity. I lifted my leg to the couch and gently rotated my foot and pushed on my toes. Ever so slowly, my foot remembered how to work. My toes still have trouble wiggling but at least it's not permanently paralyzed. I'm so, so afraid that it's going to happen again but next time it'll be my whole leg. Then my body. Then my respiratory system...  Sleep comes hard when you're afraid you'll quit breathing and never wake up.

Today my perception of temperature wigged out. I felt like I was burning up, then suddenly felt I was taking an ice bath. The thermometer read a constant 96.0 degrees. I felt dizzy, my head was pounding, my heart was pounding... Not a great day, all in all.

I just want answers. That's all. Some hope that this isn't permanent. Some day I will feel like a normal person again. Where I can go grocery shopping without my back feeling like it's on fire after a few minutes. Days when I can go a full day without a headache, or napping because the pain is too overwhelming to stay conscious one more minute.

Hopefully tomorrow there will be answers... I don't know if I have the energy to hope much longer.

The changing dynamic...

There was a death in our family yesterday. For reasons I won't go into, this means my mother-in-law is going to move in with us.

Don't get me wrong, I love this woman. She has made me feel so welcome in her family. Even if I wasn't married to her son she would be someone I look up to. This whole situation though... Me being sick and out of work, struggling to pay our bills, Phil thinking of getting a second job, our marriage on the rocks... And now my mother-in-law is coming to live with us indefinitely.

The one thing I could always count on was the peace I feel when at home. It's so calm here, there's always this air of tranquility, Now the whole dynamic of our home - hell, our LIVES - is changing and I don't know what it's going to look like when the dust settles.

And the poor woman who passed away. I'm going to miss her. She was so kind to me. The first time I met her she made me feel right at home. She was so thrilled when she found out Phil and I were getting married and I would be joining their family permanently.

How am I doing? I don't know. There's so much work to be done and my body is too weak to do it alone. I am afraid I am going to feel obligated to play hostess when Phil's mom moves in, even though it will cost me spoons I can't afford to lose. (Spoon Theory, look it up.)  I told someone my world was turned upside down when I was diagnosed with the Arnold-Chiari Malformation. Now it's being turned inside out for good measure.

When I moved back to Spokane from Montana in 2007 I was at rock bottom. I used that opportunity to rebuild my life and more importantly my SELF from the ground up. I became the person I always wanted to be: courageous, successful, loving, kind and happy. My hard work paid off and I ended up working toward an amazing career, Phil went from being a dear friend to my boyfriend to my husband, we bought a home and built a little furry family... I was on top of the world. Then I got sick. Things started falling apart. I see rock bottom looming again and I don't know how to stop this downward spiral. I don't want all my hard work to go to waste. I don't want to bust my ass yet again, build up my life to the way I want it, and see it crumble to ruin yet again. I'm tired of fighting to be happy when it seems to come so easily to everyone around me. Life keeps pulling the rug out from under me and I don't know if I have the strength or desire to stand up again.

Like a ghost...

Days like these are the worst. Days when I can't get comfortable, and I wander from the bedroom to the living room to the office. Days where I'm not in enough pain to take extra medicine (and deal with the side effects they inevitably cause), but I'm uncomfortable enough to put aside my books, paintings and various craft projects that typically keep my mind busy. Instead, I wander, like a ghost, biting back bitter thoughts toward people who are out there living their lives fearlessly and happily. I'm the ghost of this house, a faded reflection of the woman who used to live here.

Oh, of course, there's that small voice everyone seems to have, crying out, "This isn't me!" The pain and fear smother her and I continue my circuit around the house: bedroom, living room, office. Bedroom, living room, office.

Bedroom, living room, office.

I didn't choose this limbo. I didn't choose this broken body. I didn't choose this story. Sometimes I wish I had the courage to choose an ending.

Bedroom, living room, office.

Sometimes I find myself gasping for air; a reminder that I'm still bound to this mortal coil. I'm not a ghost, no matter how faded and defeated I feel. I just can't find it in me, sometimes, to want to breathe. I'm tired of the mask I wear, the appearance of strength and happiness. Leave me alone, I want to tend this bitter garden, eat this bitter fruit, and watch my Self shrivel up into a bitter shell.

Progress!

Fantastic! The neurologist poked me and stared at me and then LISTENED to what I had to say. He agreed that I deserve to have the spinal fluid flow MRI and he's going to talk to my PCP and the Neurosurgeon about scheduling it with the other MRIs I have to have. He initially thought I had psuedotumor cerebri (good call, Chad!) but my optic nerves look fine, not swollen like they would be with psuedotumor. He said, "Sometimes someone's symptoms make us go, Aha! those symptoms lead us to XYZ diagnosis. But these symptoms and how they're presenting aren't as clear cut. It could be the Chiari, but it could also be something else."

Finally I feel like someone is willing to listen to me and try to figure this out, not leave me out here in limbo wondering if this is my lot in life and nothing will change it. When he asked if I knew the remedy to having Chiari, I said yes. Decompression surgery. He asked if I'm that eager to have brain surgery.

I told him no, I want to talk to a Chiari specialist and make sure this is what's causing my issues. But I also want an end to this daily suffering, and I want to halt any further nerve damage as quickly as possible. He looked surprised that I had a well-thought-out answer.

Long story short: the neurologist can't think of anything that these symptoms could be, other than Chiari, but he's not 100% sure it's the Chiari causing these symptoms, if that makes sense. He is going to coordinate with the neurosurgeon and get me the test I need to determine how bad, really, the Chiari is affecting me.

It's such a great weight off my shoulders. I feel like we have a direction now. Things are starting to move, oh so slowly, but they're MOVING.

Thanks to everyone who has been keeping me in their thoughts and prayers. Sometimes it's so lonely here I feel like I'm going to suffocate, but then I realize I'm NOT alone. I have friends out there rooting for me and it keeps me from going too insane. :)

my neurosurgeon...

...is obviously not the right doctor for me.

I finally had my neurosurgeon's appointment this morning after waiting seven weeks for someone to see me... and what a letdown it has been. She was so focused on calling me fat that she glossed over the Chiari. Yes, I have Chiari, but she thinks because it's only 5mm it's a "mild" case. When I told her I had been reading up on it and it's not the size that matters (heh) but the spinal fluid flow, she said I didn't present any symptoms of a spinal fluid blockage and I shouldn't be reading things on the internet because I might start thinking for myself. I told her I hadn't had a CINE MRI and she said she doesn't order those because insurance usually won't pay for them. The business of medicine strikes again!

She also said all of my symptoms except the headaches (tinnitus, sleep apnea, balance issues, aphasia, memory issues, pain/burning in my neck & shoulders, vertigo, and on and on...) are all because I'm SO FAT. And she wouldn't do surgery on me because I'm SO FAT it would GUARANTEE complications. And I should see a morbid obesity clinic because I'm SO FAT. And we need to check for heart disease and blood clots in my legs because I'M SO FAAAAAAT! And she wants to do an MRI of my neck to check for a syrinx that she doubts is there but I may not fit in the MRI tube (even though I already have) because I'm FAAAAAAAAAAAAAAAAAAAT. And if she DID have to do surgery, I wouldn't be able to lay on my stomach for long enough for her to do the surgery BECAUSE OF THE FAT!

Did I mention how disgustingly, massively, blubberwhaley I am according to this neurosurgeon? (For the record, yes, I'm overweight. I've always been overweight. Before the sudden uptick in symptoms, I had started walking every day, doing yoga, eating healthy, cutting back on medications I felt weren't necessary... I lost almost 15 pounds. Now I'm practically bedridden. How am I supposed to lose weight when standing up makes me dizzy and my vision go gray?  We ordered a set of resistance bands so I could lay in bed and use them as I felt up to it. It's not like I go to McDonald's every day and lay on the couch covered in french fry crumbs! I still eat a gluten free diet and drink lots of water and cut soda out almost completely. But I don't have high blood pressure, high cholesterol, diabetes, thyroid problems, or any other "fat" diseases. The pain and headaches slowed me down, and I started gaining weight. The disease caused a lot of the fat, not the other way around.)

She ordered another MRI, doppler on my legs, and is sending me to the ophthalmologist because she "doesn't see any indication of double vision." Apparently me telling her I have double vision is lies all lies.
Phil wants me to give it a month with this neurosurgeon and see where this path leads. I want to smack her in her smug mouth and find a different doctor.

God, I'm so disappointed. I thought things were finally starting to look up.

From the bed...

Doing better, emotionally. Between encouragement from unexpected sources to a neurosurgeon appointment this week, I no longer feel like I'm drowning. I've got a direction now and things to do to prepare. It feels good to know someone will finally talk to me.

That said... God, this pain is miserable. I made it through my sister's wedding ceremony but ended up leaving fairly quickly afterward. I was her maid of honor. I was so embarrassed about my limitations (wearing different shoes because my feet are so swollen, having to cling to the best man as we descended the stairs, and sitting during the ceremony instead of standing by her side) I tried to push myself harder than I should have. Luckily, Phil has been quite the mother-hen, keeping a pretty constant eye on me. He knows when I've had enough but lets me make the final decision about when to leave/what to do. He's usually right but I'm too stubborn to give up control of my life to this disease. The past two days I've been sleeping pretty constantly to recover from the wedding. That's not like me... 

Tomorrow is an appointment with my PCP and the day after is the appointment with the neurosurgeon. Nervous does not even come close to how I feel. What if the NS doesn't believe me? Or dismisses my symptoms as something else? Or doesn't have any experience with Chiari? Or shifts me back to another doctor for whatever reason?

I would appreciate prayers, good thoughts, whatever you please, especially the morning of the 8th. Patience is not my strong suit and I don't know how much longer I can hold out.

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.

United States of Me

It's been a crazy few months in the 7th House homestead. My "full time" job is becoming more hassle than the pay is worth. While I can't yet support us with my birthy jobs, I can't let them fall by the wayside. So I work twice as hard as most folk, while trying to finish my A.A. and maintain a relationship with my new husband.

What a ride!

Transitioning from being An Employee of a Large Company to a self-employed woman is such a scary prospect. Having the comfort of knowing I have an income and health insurance is wonderful, but it comes with the price of being treated poorly with little to no recourse. Being my own boss and doing something I love comes with a cost as well - knowing that if I don't throw my all into it, I won't make enough money to support my family. It will have to be done sooner or later, and I keep telling myself, "Like a bandaid - do it quick and it won't hurt so badly!" But I'm still nervous... Yeesh. I'll get there soon. Until then...

I'll treat myself kindly, work toward my goals and know that some day this will all have been worth it!

Just keep swimming, just keep swimming...

Those of us who want to make birth work our main source of income know how difficult it can be. Knowing that, especially in Spokane, people don't really know what a doula is or what Lamaze classes can do for them means we have to lower our prices. We get paid less than half of what women in Seattle get paid for the same services.

That's why doulas here have a wide range of skill sets. Some are also childbirth educators, some are lactation educators, some can do placenta encapsulation... I myself am working toward getting my Lamaze Childbirth Education Certification (LCCE), I have my Lactation Education Certification (CLE), I took a course in neonatal resuscitation, and I had my doula certification through Childbirth International (CLD (CBI)). I began working on a second doula certification through DONA but realized it would clash with my role, if I chose to use it, as a midwives' assistant.

Did I mention? I think I'm going to take midwives' assistant training. It's a good course with solid knowledge to have in case I'm at a home birth and the midwife needs an extra pair of hands in an emergency. I could also work with a local midwife as her assistant, backing up while her assistant/apprentice is out on maternity leave.

I'm also going to a really exciting certification class to learn how to use a TENS unit (for myself and for my clients!) and get a refresher in using a rebozo.

The hard thing is... all these classes and certifications cost money. Lots of money. But if you don't have a wide array of skills, you're less likely to be hired, and you'll make less money, and you won't be able to take the classes to get the skills.

What a cycle, huh?

There are exciting things in the works though. A handful of women who are as passionate as I am about the lower income section of our community are planning some very big things. We have spoken with lawyers, we have a grant writer, we had a gluten-free pot luck even! I think we are going to make great things happen but it takes time...

Hold on, women of Spokane! If you need a doula, or a child birth class, or prenatal massage, or information on breastfeeding, or any kind of pregnancy support... and you can't quite afford it... We're on our way!