Today was the first time I’ve seen a brain doctor since January. I’m sure that doesn’t seem like an especially long time because, well, it’s not, but it has felt like an eternity, especially considering how much pain I’ve encountered since the last appointment.

They had conveniently scheduled an MRI for 12:30 (check in at noon) before my 1:30 appointment with the doctor. The scan would be immediately available to the doctor, no waiting. I appreciated this on a special level because that hospital? Almost 50 miles from my house. And saving me a trip is pretty much my favorite thing ever.

When I checked in, my information was there, but within a few minutes, the front desk realized there was a problem. I had an appointment, but they had no doctor’s orders. And then when they called the doctor, they couldn’t remember scheduling the MRI. Nothing like looking like the crazy MRI seeker in public.

After the doctor’s office faxed in the orders they finally remembered creating, the guy at the front desk lost them. And seriously, could not figure out where they went. He looked and looked and looked. They were no where. There’s just something really comforting about knowing that a piece of paper with all your personal and medical information is floating around a hospital. I mean really.

After all the hullaballoo, the MRI didn’t start until after 1. Which meant I had a snowball’s chance in hell of making my appointment on time. Which, really is fine, I haven’t been on time to anything in the last year anyways.

And then there was the scan itself. You remember that one time where I said I’m not going to have MRIs without sedating myself first? Yea, well, I didn’t until 10 minutes into the MRI. Oops. I was actually doing totally fine until she said that it was time for the “really loud” one, but what she neglected to mention was that the really loud one also bounces you around like you’re an kitten in a clothes dryer. Dear God.

And for whatever reason, the bouncing all around caused my brain to go totally fucking haywire.

I got hit with a wave of dizziness that rivals any I’ve ever had before. When the loud scan finally ended, the dizziness slowed. But as soon as the dizziness stopped, my eyes lost their shit and for the next 10 minutes my eyes danced from side to side, completely out of control (it’s called nystagmus and unfortunately is not a really new thing). They continued to wiggle back and forth through the gadolinium injection and all the way until the end of the last scan.

I walked out of the imaging center around 1:45 and made it to the office by 1:55. They agreed to see me late, which I was incredibly grateful for.

Despite a lengthy wait, the doctor hadn’t had much time to review my actual MRIs, but in the little time he had, he was able to identify pachymeningeal enhancements on my scan. Having done excessive amounts of research on the screwed upness that is my brain, I knew what he was talking about (sort of). It’s basically another nice objective sign that my body is dealing with low intracranial pressure and it’s a brand spanking new one.

And because of that and my ever decreasing pressure, he thinks that the problem really has to be a spinal fluid leak. Frankly, there just isn’t any alternative cause.

But the great part is that with this diagnosis, comes treatment. TREATMENT. He gave me two choices, but because of the cost and complications and time factors, only one option was really feasible.

Later this week, I’ll be having two high volume blood patches. They’ll do one down low in my spine and one a little higher, in an attempt to basically coat my entire spinal column (with blooooood) and clot holes that could be anywhere along it. He said that sadly they won’t double the Versed for the doubled patching. Tragic, really.

I’m more than a little scared, because, well, these blood patches hurt like a sonofabitch. But at the same time, I can’t even begin to tell you how nice it is to hear a doctor say that he thinks a treatment will work. It’s been a really long time since anyone has said that to me.

Probably since the last neurosurgeon prepared me for brain surgery. Hello, irony.

And I believe him. I believe that we’re looking at the first real possibility of relief. I think we have a plan that just might be the first thing in 7 months that will make a difference. The first thing that can give me even a piece of my version of normal back.

And for now we just wait, and hope.

And try not to spend much time dwelling on the irony that it’s going to take two REALLY BIG NEEDLES in my back to make me feel better.

I called my neurosurgeon last Friday and cried uncle. Things had gotten out of hand with the pain and the dizziness and I knew it was time to pick up the phone, so I did. But on the message I left, I was vague about what was going on. And so it was late Monday before I got a call back.

And then I uttered the magic words. Face tingling.

Wow. You’d have thought I said that I had a bomb strapped to my chest that I would detonate in a kitten farm if they didn’t deal with me in that moment. There was a conference with the neurosurgeon right then and there, wherein they decided that I didn’t just need to be seen, I needed a brain MRI first. I was told someone would call me back to schedule that day.

I finally called them today (the nurse was really confused because she swore someone called me) and I got an appointment for an MRI at noon on Tuesday and an appointment with the neurosurgeon at 1:30 the same day. We’re doing it wham-bam-thank-you-ma’am style this time. No waiting for results, just image and appointment.

I fully expect this MRI to come back clear, I’m not worried, except maybe about the cost. The MRIs always come back clear, and so before we scheduled I questioned the need to have another one. They assured me that it was time to do another one of my brain because it’s been a while, so I gave in and agreed. What’s another few thousand dollars between friends?

Here’s how it’s going to go- I’m going to have the MRI, I’m going to walk to the doctor’s office. He’s going to hem and haw a little and then say that everything looks normal. And then we’re going to sit there, awkwardly, in the silent void, while he thinks of things to suggest and I think of how frustrating this process is.

Aside from this MRI, I think we’re done with tests. We just sort of ran out of them.

We know I have low pressure, in fact, we know I have pressure that is getting lower and lower. It started at 8, which is moderately low and at last check it was 4, which is outside of the norm low. It’s not fixing itself and the headaches sure as hell aren’t improving. I now have dizziness as a constant companion and the ear ringing is at an all time annoyance peak.

So I have this low pressure, but we’ve done every test there is to do and I don’t have a spinal fluid leak, which is literally the only documented cause of intracranial hypotension. Go ahead, google it. I have. Over and over. There’s nothing else. I have a condition but I don’t have the only documented cause. Isn’t that special?

And now it’s time to treat it. I honestly have no earthly idea of what the treatments could include, because all the literature seems to indicate that I’m an anomaly (which is pretty much my favorite thing to be). But there must be something. There has to be some drug, some diet, some change I can make to increase my pressure and I’m ready to try just about anything.

When I told my husband that I knew he was right and that it was time to stop having tests done I sobbed and sobbed because it felt like defeat. It felt like I was giving up and letting my pain control everything. It felt like, if we quit looking I was accepting that this was my life, forever.

But I’m not.

Because I’m not walking away, I’m not accepting defeat or this fate. I’m just trying to find a way to control it. It doesn’t matter if it’s caused by a leak or my body being defective. It’s just time to fix it, however, with whatever, and at any cost.

And that will be my mantra on Tuesday.

It’s time to try something, anything, because I’m just not willing to lose another 7 months of my life to pain.

I truly don’t know if I can continue on like this and I’m scared to think about the alternative.

This weekend has long been scheduled as a weekend of preparation. I am packing a suitcase and make travel plans.

Back in December I found out that my request had been accepted and I would be completing my first 2 week clinical experience at a facility in New Orleans that I was familiar with. I was ecstatic. I chose it because I knew that I could learn there and not feel the awkwardness that I would at other facilities, I knew it would be a great first clinical experience. I marked it on my calendar. I made plans.

I let myself get excited.

And then January happened.

The instant that the nurse handed me the post-op instructions from the neurosurgeon, I knew there would be a problem. I knew that March 1st through 12th fell well within the 2 months of not lifting more than 5 pounds. I also knew that in the profession I’m going into, few things that I’ll do will require lifting less than 5 pounds.

I tried to stay positive. I focused on the good. I was getting better, the spinal headache was gone, I was going to be able to return to school. All good things. On my second day back I sat down with my faculty advisor and got the first inkling that my optimism was useless. He scheduled a meeting for me with the program director that afternoon.

As I sat down in her office, I was prepared to fight. I wanted this. I had worked hard for this spot at this clinic, hell, I’d worked hard just to finish the 1st semester. These 2 weeks in New Orleans were among the few things that kept me going last semester when I wanted to quit. I didn’t want to let down the people at that clinic, the people who were working to find a way to let me come learn from them. I wasn’t going to go down without a fight.

But as the conversation began, it became clear that I was going down, fight or not. The program director told me what I already knew. There was no way to complete the clinical without lifting more than 5 pounds. And observing instead of doing hands on work wouldn’t allow me to meet the objectives of the rotation.

As I used every ounce of strength I had to keep the tears from pouring down my cheeks, I asked her what I was supposed to do. Deep down I was terrified that she was going to tell me that it was finally time to drop to half-time status and add an extra year to my 3 year degree. It is something she’d suggested in November and something I had absolutely refused to do.

Thankfully they already had a plan for me, they’d just add one more week to my 6 week clinical this summer and one more to my spring clinical next year. She assured me that this was the best time this could happen.

I nodded and said okay. I didn’t argue. I didn’t fight.

I left her office and walked to the library for class, feeling my warm salty tears pour down my face as the cool wind whipped around me. I was overcome with emotion, with pain. Frustration of more plans being ruined burned in my head. Jealousy of my classmates, for the normalcy they take for granted seared through my heart. Anger over the lack of control over my body coursed through my veins. But mostly sadness and regret washed over me, rendering all the other emotions quiet and small.

I was all at once a small, quiet person, drowning in tears, in pain.

I kept walking and crying. I kept thinking how I wished I could go back in time and somehow undo this. Somehow change something to stop this chain of events from getting me to where I was that day, where I am today.

Because I am packing. But I’m not going to New Orleans. I couldn’t stop this from happening.

I’m going home to spend a week with my family, and then I have two more weeks of vacation. I realize that 3 weeks of vacation sounds glorious, and on some level that I have yet to reach and appreciate, it is. But I would gladly give up 10 of those days to be in New Orleans, doing what I’m supposed to be doing. The realization that I just spent hours and weeks catching up with my classmates so that I could be 2 weeks behind again is painful to accept. I feel like I’m fighting a perpetual uphill battle and most days I can’t decide if I want to rest or just quit and fall all the way down the hill.

But so for 3 weeks, I’ll be doing the former. I’ll be resting. I’ll be visiting family, I’ll be baking and relaxing. I’ll be having a few small pity parties here and there and writing a few papers that are due in late March. I’ll be wishing that things were different but knowing that there’s nothing that can be done about it.

I’ll be trying to find a way to acknowledge that though these 3 weeks of vacation are not at all what I want, perhaps they’re what I need.

A lot of people harbor resentment on Valentine’s Day. It’s hard when you’re single, it’s hard when your relationship is struggling, it’s hard when you miss someone in your life. Basically it’s only a good day for like 1 out of every 10 people. And the other 9 people absolutely hate that one happy asshole.

I’m sort of neutral on it. I love my husband with every fiber of my being. He is what keeps me relatively sane, keeps me grounded. He loves me even when he probably shouldn’t. He puts up with me when I can barely stand myself. And if I’m being honest, I really like having a day set aside to celebrate that. Yep, I’m that asshole.

But this year is a little different. You see, our (controversial) trip to New Orleans got sidelined by mother nature. I was only going to stay until Monday, so when Delta rebooked us for Sunday morning, I knew it just wouldn’t happen. With less than 24 hours in NOLA, I wouldn’t make it to any parades, I’d barely get 2 meals and that’s just a lot of pressure changes in a short period of time.

I’m bummed because I was looking forward to the trip, to seeing friends, to being in the city that I love, but it’s out of my hands (I’m actually sort of getting good at relinquishing control. Someone call my shrink and tell him that I don’t need him). My trip was scheduled to end Monday so I could be back at school, but Slappy doesn’t have to be back at work until next week. He chose this week of vacation so he could go to Mardi Gras, and at my insistence, he’s there now. He didn’t want to leave, but though he might not ever admit it, he needed some time away. He has picked up so much of my slack lately, I just wanted him to go have some fun.

So we did Valentine’s Day stuff last night. We went to dinner and a movie (Avatar, which I saw because I lost a bet, but surprisingly really enjoyed. I just can’t imagine how every many who’s ever seen it doesn’t feel totally ripped off for spending 3 hours in a chick flick) and just spent time being with each other. It was exactly what we needed. I can’t even begin to tell you how lovely it was.

And with all that said, I can see why as an in love asshole, you might not understand why I’m not all rainbows and unicorns today (besides the fact that really? have I ever been unicorns and rainbows about anything?) The real reason I struggle with celebrating Valentine’s day is because it has another memory tied to it, one less lovely than the dinners and dates and gifts that have been exchanged in my 6 Valentine’s with Slappy.

Four years ago today, I was diagnosed with Chiari Malformation. Four years ago, I started this battle with my brain.

I’m not a huge anniversary keeper most of the time, but this date is hard to forget. It’s hard not to remember that on Valentine’s Day 2006, I drove to my ophthalmologist’s office to get the results of my MRI. It’s hard not to remember the way the doctor sounded scared for me. The way he told me to call a neurologist as soon as I got out of his office. The phone call I made to Slappy who was 2000 miles away.

Even with the panic, the diagnosis wasn’t the end of the world. In fact, I felt relieved. We knew what was wrong. We knew the options. We new the next steps.

I thought we knew the fix.

And so the reason I feel conflicted today is that it’s been 4 years now, and even though we’ve jumped through every hoop we can find, we still don’t have the answers. After one brain surgery, 10 bajillion MRIs and 3 lumbar punctures, I still have pain that we can neither treat nor fix. The frustration is great and it’s gotten really difficult to keep my chin up and hope that by next year, things will be different. It just seems unlikely. Impossible.

And so this day is a double-edged sword, a wonderful victory and a deafening blow to my life.

Today I celebrate love, because imperfect though it may be, it is the thing I treasure most in my life. It is what keeps me going. And at the same time, I mourn the loss of normal, the onset of pain, the thing that stops me dead in my tracks. And I cling to hope that next year, I’ll be able to focus only on the good and that the 5th year from the day of diagnosis will be the first year of real relief.

Happy Valentine’s Day.

As with most things in life, it is easier to see and remember the negative things that chronic pain has brought into my life. It’s unfortunate, but true. But I would be lying if I told you that nothing good has come out of it.

A few months ago I wrote a blog post (somewhat, um, passive aggressively) to a family member that I was struggling with greatly. We couldn’t hardly be in the same room together. She couldn’t find an ounce of sympathy or empathy for things that were happening with me and instead settled for harsh criticism.

I left Thanksgiving ready to never see her again. It was sad, but things were just so bad.

In the months since then, things have changed so much I can hardly believe the words I wrote months ago. The relationship that was essentially completely demolished, that I was ready to completely sever, has grown by leaps and bounds. It has become a relationship that I have wanted my whole life. She has become one of my biggest supports, one of my best cheerleaders and one of the people I can talk to about anything.

I had given up on us. I had given up on ever feeling close to her. A closeness I have wanted, a closeness I had never had (this is not to say I had no role in our troubled relationship, it was just never what I wanted it to be). I am certain that we will have more fights, that not all days will be easy, they can’t be. But the incredible difference that these few short months have made is amazing.

I could spend hours telling you about how my life has changed in the past 6 months, or even in the past 2 years since the surgery. My energy levels are so low that evenings are a major struggle. When I get home from school, I go directly to the couch or bed, just trying to finish what I have to do before crashing like a ton of bricks. Simply put, my life is entirely different than I ever imagined. And in general, the difference is not for the better.

But there are these few silver lined things, like this relationship, that have emerged. And while it is easier for me to think about what I have lost, tonight I’m clinging to what I’ve gained. To a relationship that has been resurrected.

To a truly good thing that has emerged from this cloud of ugliness.

Last Friday, the world spun around me. It was one of those truly awful experiences that is burned into my mind forever.

Since then, it has become my life. It has become normal. Just another thing on the list. Sitting in class each day, I’ve come to expect the world to spin. I’ve come to expect the feeling of gravity dropping. The feeling of being totally out of control in my own head.

I’m lucky that the racing heart has stopped, because there’s a real limit to what I can handle and we’re dangerously close to pushing it.

I know that I should call my neurosurgeon, or the worthless neurologist, but I’m waiting, for a couple of different reasons.

I have had a cold that became a sinus infection since early last week and it just won’t quite go away. I woke up today with even more congestion than yesterday, so I’m not sure which side of this cold I’m on. Since I know that congestion can lead to dizziness, I want to wait that out, just in case. I’d hate to waste time for come regular old sinus or ear pressure.

But more than that, I just don’t feel like being poked, prodded or tested more. I did a little research and found that unsurprisingly, low csf pressure can cause dizziness. I’ve had some before, but this feels different. It feels constant. It feels shitty.

And if I’m being perfectly honest, I also fear that the neurosurgeon will tell me what I don’t want to hear. I’m afraid he’s going to say that there’s nothing he can do. He’s alluded to it before, but I don’t know if I can hear that. I don’t know if I can face that reality yet.

In the back of my head I know I’ll have to, and probably soon, but not yet.

And so I’m giving myself until the end of the week. I’m waiting for my sinuses to clear, for my mind to clear, to see if this weekend away makes any difference, for better or for worse, before taking the next step. Before making the next call.

Before asking for help again. And before facing the possibility of not being able to receive any.

I’ve sat down at the computer a few times in the past few days and stared at the blinking cursor, unsure of what to write. I have been in my head since Friday, some of the time it was because I was overwhelmed, some of the time it was because it was the only way to escape life. To escape reality.

Things have been said to, about and by me this week that ring in my ears. Things that are all true, that were not said to hurt, but that were said. That needed to be said. That no matter how hard I try, cannot be unheard.

It’s clear that my pain, my problems have extended beyond me. It’s clear that they do not just change my life, that they change others. And while I knew this before, I guess I failed to appreciate the degree to which they do. I forget how my health changes my husband’s days. I forget how much work my friends have to undergo just to help me catch up in school. I don’t realize the energy that my teachers expend trying to accommodate me.

Earlier this week, one of my classmates, upon overhearing the drama of the dizzy/heart thing on Friday, commented that if she was me, she’d have quit school already. I know that on some level, it was meant as a compliment. She was impressed that I had managed as much as I had, impressed with my perseverance. I know that.

But I keep replaying it in my head. Over and over. She’d quit if she were me.

And what I hear is that other people see that things are so shitty, that if they were in my position, they’d quit. And then I wonder if I should. I wonder if it’s worth it. I wonder if, even if I can pass my exams and graduate in 2 and a half years, if I’ll be able to work or if I will spend the rest of my life fighting for a tiniest sliver of normalcy.

I wonder if it’s worth it.

My husband asked me a question this weekend that I can’t wrap my head around. He wondered if since my unhappiness is tied to my health and my health doesn’t appear to be getting better anytime soon, if I thought I’d be unhappy forever. He didn’t ask it to be an asshole. He asked it because it needed to be asked. He asked it because he bears the brunt of my health and the havoc it reeks on those around me. He asked because my happiness, or lack thereof, is very directly impacting his.

And I sat there, sort of stunned.

Because well, maybe. I don’t think I’m depressed. I don’t think it’s a chemical imbalance. I think that I am unhappy because I am in pain. I think I am not myself because right now, my life kind of blows. But he’s right. there’s no end in sight. If the blood patch was going to seal up any tiny leaks that could be lowering my intracranial pressure and causing my headache, it should’ve already. And as much as I try to pretend like it isn’t, my head is still hurting. Every damn day.

It’s been 6 months. I am miserable.

What if it lasts 6 years?

6 decades?

It’s just hard to imagine how life plays out from here. It’s hard to get out of my head, to see the world around me, to see how much I’ve hurt those I love, those I need.

I don’t know what else there is to say or do. I don’t know how life moves on from here or what’s next. I don’t even know what the next hour will bring, let alone the next day or week. I can live with not knowing, that’s a fact of life. But I can’t live with the fear that comes with chronic pain. The fear that comes with seeing your life harm others.

The fear of life being the way it is, forever.

I don’t fear that tomorrow will bring something new. I fear that tomorrow won’t bring anything different than today.

I don’t even know where to begin.

I went back to school Monday morning, bright and early. Things went okay, though it was incredibly overwhelming and absolutely exhausting, but I managed.

The very last thing that I had to do before leaving school was change out of my anatomy lab scrubs and tennis shoes back into my normal clothes. I got dressed, and without even thinking, bent over to pick up my flip flop to put it on. Normally, this would be no big thing. But normally, I haven’t had 3 needles and a crap ton of blood shoved into my back in the past week. I can only describe what I felt when I bent over as unholy, terrifying pain. By the time I got to my car (sobbing all the way, I might add, because crying in public? kind of my thing now) my back hurt from just below hip level to the middle of my shoulder blades.

And then I got to sit in traffic for an hour and a half. (And do a whole lot more crying.)

While stuck in my car, I got a call from my husband.

Important tangent: My husband has a hard time getting work done with noise, so he will often work in the bathtub, with his laptop on a chair. He runs the water and it acts as kind of a white noise machine. Yes, it’s a little odd (and yea, a little mental image-y, sorry about that), but it works for him.

Or it did.

Because the call that I got from my husband? was to let me know that my cat had walked up behind his computer and knocked it off the chair and into the full bathtub.

My husband’s not even two year old MacBook Pro, was submerged in hot water. HOT WATER. In case you were keeping track, that was thousands of dollars, literally down the drain. I don’t even have words for this yet.

After getting home and eating dinner and finishing homework and dealing with a very upset husband, I went to bed early, hoping to help with the exhaustion. I went to bed at 9:30 and proceeded to spend more time awake than asleep before my alarm went off at 5:40 in the morning.

And as if on schedule, on the way to school, I had a total meltdown. For whatever reason, the commute to and from school just demolishes my sanity. It’s like I sit in a river of hormones for those 3 hours each day.

What I realized this morning was that my midterm exams are in less than 3 weeks (I have 6 of them in one week), I have missed 9 days of school (out of 15) and I’m so far behind that I don’t even know what I don’t know except that it’s A LOT.

Another important tangent: In December, Slappy and I had decided that because I had a 3 day weekend that happened to fall on Valentine’s Day, his birthday and the weekend before Mardi Gras, that we could swing a trip down to New Orleans to celebrate. He got a week off work, we bought tickets.

It’s something I’ve been looking forward to so very much. And I realized this morning that I couldn’t go, not with school, not with all these absences piling up. I have insisted that Slappy go any way because he has a week of vacation and loves Mardi Gras, but I’m just bummed as hell to not be there (for his birthday especially). I know it’s the right choice, it’s just a shitty one. I took comfort in the fact that I was scheduled to go to New Orleans for 2 weeks in early March for a clinical rotation for school. It made the decision easier, the disappointment a little less.

So I cried for the remaining 20 miles of my morning commute, arrived at school on time (looking like a hot mess) and sat through a PAINFULLY long lecture that was given by the instructor who is assigned as my faculty “mentor.” After class I went up to him to let him know about the (pertinent) post blood patch restrictions, especially the not pushing, pulling, lifting 5 pounds for 2 months thing. Because in the field I’m going into, and in his class especially, we do a hell of a lot of pushing, pulling and lifting.

And he sighed sympathetically, thought for a moment and told me that I wouldn’t be able to take two of my midterms on time. Both require me to lift much more than 5 pounds and perform exercises that I simply can’t do, at least not in less than 3 weeks when I’m supposed to. So now I have to take 2 of my midterms at final exams. Don’t look now, but it’s LAST SEMESTER ALL OVER AGAIN.

So then I cried some more.

And then he told me that I had to meet with the program director at lunch to discuss other ramifications of the 5 pound bullshit. The first thing she asked me was if I thought I should drop to half time, which would extend my program by a year. She told me that some of my instructors had indicated that they’re concerned that I’m not going to pass and while she has confidence in me, she had to ask. In case you wondered, the answer is no. She and I have had this conversation before and the answer is still the same. I’m not spending an extra year in school. It may sound stubborn, but I’ll quit first. But it feels really GREAT to know that my instructors don’t think I can pass my classes.

And then, when I thought things couldn’t get worse, she informed me that because of the fucking five pound rule, those 2 weeks in New Orleans that I was clinging to? They’re gone.

I can’t go.

I’m sure it sounds silly because it’s not that big of a deal in the long run, but it fucking sucks. I have worked so hard to get to where I am. I worked so hard to pass last semester so that I could do those 2 weeks in New Orleans. I sacrificed time and sanity to be able to make it to this point. And it’s for nothing.

It’s another casualty of my health.

It’s another dream demolished by pain.

And just in case you weren’t keeping track, today, this awful day filled with suck, also happens to be the 6th month mark on this headache. If that isn’t just fitting, I don’t know what is.

I have lost so much in these six months and today, like many other days, I have been defeated by this pain. I have been reminded of all that has been stolen from me. I have been reminded of how my life, my dreams have been forever changed by pain.

And I am a mess.

And I just don’t know how long it’s going to take to clean things up this time.

Just before the procedure on Thursday, my neurosurgeon popped into the hallway where I was waiting on my gurney, to speak with my mom and me. He was there to do my blood patch, but he also had the elusive myelogram results we hadn’t been able to get in the entire week of post lumbar puncture hell.

Shock of shocks, no leaks showed up on the myelogram. I wasn’t surprised, nor disappointed. I’d like to pretend it’s because I’ve leveled myself out emotionally, but I’m pretty sure it was because I was in the throws of FREAKING OUT about the unexpected anesthesia. I am full of sound logic and sanity.

But the neurosurgeon did mention that my pressure was low. Low low. Obviously-not-normal low.

I’m-not-crazy low.

He said that a pressure that low could be one of two things.

It could be either one or several very small csf leaks that didn’t show up on the myelogram.

or

My body simply isn’t producing enough csf.

And there’s not a great scientific test to know which one it is. Which is frustrating. His hope is that the high volume blood patch he did would seal any leaks that might exist that didn’t show up. That’s why he was so set on putting in so much blood even though it hurt (and holy crap, continues to hurt) like hell.

And so now we wait. Which, in case you didn’t know is pretty much my favorite thing ever.

I just love waiting.

I honestly don’t know if the headache is better or not yet. Because I’ve spent so much time in the past 3 days going, wait, does my head hurt? Does it hurt like it did this week? Does it hurt like normal? Is it better?

And the only conclusion that I’ve come up with so far is that I need to stop obsessing about it and give myself some time to settle in. If the normal, almost 6 month old headache gets better, it was a leak. If it doesn’t, it’s probably that my body isn’t producing enough spinal fluid. Not scientific, but logical.

And though I want answers, I need a break. I can’t keep doing this, I can’t manage a life peppered by medical tests and side effects.

In the past week I have experienced pain that I never even imagined could exist. I haven’t been sleeping much because many of my dreams take me back to the horror of the failed blood patch Monday or the two hours of hell at the doctor Wednesday. Sleeping seems to allow me to let down my guard just enough to remember and realize how much that pain paralyzed and petrified me this week. How much it wore down my sanity. How much it hurt more than just my head.

Life is slowly returning to some semblance of normal. Or, rather, I should say “normal” because I don’t know if we’ll ever get that back. And maybe that’s okay.

And now we wait. And worry.

And hopefully, move on.

Today began much as I had anticipated. I slept in until 9 (minus feeding the cats at 6:30 because it would apparently kill them to sleep in too…), my mom and I got on the road at 10:30, I had the first throw of death by hunger at 10:31 and even though google maps said that without traffic the hospital was only a 50 minute drive away, it took us the entire hour and a half to get there. Fun times had by all, let me tell you.

We checked in and because of a communications snafu, ended up sitting in the wrong waiting room for an hour. And by sitting, I obviously mean laying down on the bench, contracting 800 different diseases but trying to reduce the enormous head pain of being upright. Once that got sorted out, I was taken to the very same pre-op area where I’d spent my past 2 Fridays. It’s always nice when the nurses know who you are before seeing your chart.

My nurse got down to business and told me that she’d have to put in not one, but two IVs. She then took to alternately examining and smacking my arm to see if there were any good veins. She did not approve, nor instill confidence. A small lifetime later I had one IV in each hand and I had climbed on the gurney to go to interventional radiology.

Now, I’m not new to blood patches. I’ve had 2 now. They’re not a big deal. You lay on your stomach, they numb you, insert the needle (check it’s location on x-ray), take some blood and shoot it in. It’s not comfortable, to be sure, but just not that big of a deal.

I met with my neurosurgeon (more on that another time) and then was introduced to my anesthesiologist. Um, wait. What? Anesthesia? No. Just no. Anesthesia and I do not agree. In fact, we usually hate each other with the force of hours of dry heaving. After much convincing and hyperventilating, the anesthesiologist agreed to not use Propofol, but a different drug that would give the “twilight” effect.

I rolled onto the procedure table, my back was exposed and the anesthesiologist explained that he was giving me some Versed and Fentanyl. Before I could say anything, my eyes were droopy. I was awake, but dude, the world could’ve ended and I’d have smiled right through it. As it turns out, anesthesia and I don’t agree, but Versed and I are pretty much blood brothers.

The procedure itself was VERY uncomfortable because my neurosurgeon believes that the best way to do blood patches is to put as much blood in as he can before the patient cries uncle. And when you cry uncle, he puts a little more in anyway, just for good measure.

In a word: ouch.

The whole thing was over in less than 30 minutes and my mom was brought back in. And then she made a fantastic little mistake. She gave me my phone.

Um, I misspelled cake. I was clearly high out of my mind.

After my hour of coming down off my high resting the nurse came in to give me my post-operative instructions. I expected the whole lay flat for a day and take it easy nonsense. Which is why I literally laughed out loud upon reading my post-op notes.

“For two months: no high impact exercises, including running, jumping, bumpy rides, bending forward, or lifting objects heavier than 5 pounds, including heavy grocery bags. Walking or mild swimming in warm water is okay.”

Okay, first of all, high impact bending forward? How do you even do that? I really want to try it, because, dude, how wouldn’t that be awesome?

And mild swimming? Is that like halfway between drowning and freestyle?

But wait, there’s more.

“Sexual activity for 2 months: Female on top, male on bottom.”

Um.

Wow.

So, let me see if I can get this straight (and break everyone’s minds). No high impact exercises, including “bumpy rides” but the only way that I can have sex is on top?

I totally just got the high impact bending over restriction.

Honestly, I can’t wrap my mind around this. Have these people never had sex? Because that’s just not how it works. Or just never had good sex? And more importantly, what the hell kind of study did they have to do to figure out that being on top was less traumatic?

I mean REALLY.

I suppose I can’t hold too much of a grudge, I did get really high on some really REALLY good drugs today. And, you know, he might have repaired this headache, which I guess is probably a good thing. I suppose that in exchange I can stick to mild swimming, low impact bending over and dictated sex.

The sacrifices I make for my health. Sheesh.