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 realized last night that going to school this morning would mark the first Friday of classes I had attended all semester. Because first there was the failed myelogram attempt, then the myelogram, then the spinal fluid leak/blood patch. I wasn’t exactly looking forward to being at school all day Friday, but I was feeling especially proud of myself for making it through this week. It hasn’t been easy, to say the very least.

At around noon I was sitting in the last part of my morning lecture, totally engrossed in what was surprisingly interesting material, presented by my very favorite instructor, when something just went wrong.

It was as if the entire room moved around my head. But not in the way that I usually get dizzy. It was such a foreign feeling that for a moment, I was sure I was having a seizure.

The spinning continued for what felt like an eternity, but was probably really only 10-20 seconds. And then my vision normalized and the room was still once again.

But in the still room, my heart began to pound. I assumed it was anxiety and I slouched down to try to make myself flatter and took big deep breaths. I’ve done the racing heart thing before, I thought I could manage it. But nothing I did seemed to matter. It just beat faster and faster.

I finally grabbed my friend who was sitting next to me and asked her to feel my pulse. She put her hand on my wrist for a second and before I knew it, she was pulling me out of class and into the hallway. On her way out she grabbed two of our instructors (who are health care professionals). When I got into the hallway, one of the instructors tried to take my pulse. But it was literally so fast that she couldn’t keep count, she guessed it was probably near 200 beats per minute, but she couldn’t get a good count. I tried to focus on my breathing and on relaxing, but even after a few minutes of calm breathing my heart rate wouldn’t normalize and before long I was lightheaded and losing feeling in my fingers and toes.

The laid me down in the middle of the hallway, made me drink water, put a cool cloth on my neck and very very slowly, my heart slowed. To 150 beats per minute (my normal resting heart rate is between 60 and 70, when I exercise, I have to really seriously focus to break 110).

The decision was made that I would go to the student health center to be checked out, but not before the entire second year class, all 96 of them, got out of a class in the room next to ours and walked by. Because all I really needed was a heaping pile of embarrassment on top of the rapid heart rate, lightheadedness and trembling that I couldn’t control.

We got to the student health center the instructors had to leave, so it was me, all alone in a room, waiting for the doctor. My blood pressure was high, my pulse was still 120 and I was alone. I am still pretty impressed with how I handled the anxiety, but there were moments where I thought I would surely pass out alone in the room or have a heart attack and no one would be there to help me.

After an EKG, urinalysis, an intramuscular injection of an anti-nausea/dizziness med, 2 failed and 1 successful attempt at blood work, we found the likely source of the problem. I’ve been fighting off a small cold all week (one I had almost successfully convinced myself was allergies, but no) and I had developed a mild sinus infection, but the bigger problem was that through the production of massive snot quantities and my body trying to recover from last week’s spinal fluid leak, that I was dehydrated. Nevermind that I’ve been upping my fluid intake and taking super good care of myself, my urine sample showed that I wasn’t just dehydrated, I was really dehydrated.

We are still waiting on the bloodwork to make sure that there’s nothing else going on, but it would appear that I need to deal with the sinus infection and dehydration and all will be well again. If I get dizziness anything like today, my heart races or if my headache gets dramatically worse I’m supposed to go to an ER post haste. But I think I can speak for everyone in my life when I say that we really don’t want to do that.

I’ve relived the unpleasantry of this morning in my head about a hundred times today. The feeling of helplessness, the terror of the room spinning, the heart beating so fast I thought it might burst. It certainly wasn’t the worst thing I’ve experienced, but the way it caught me off guard, scared me and completely incapacitated me, was terrifying.

It was horribly scary and frustrating all at once. I missed yet another class, I drew attention to myself that I DID NOT WANT, and even though I’ve been trying so hard to take good care of myself, I’ve failed again. I know it’s not a huge deal but I have worked so hard this week to do what needed to be done, to get enough sleep, to pace myself so I’d have the energy for 5 full days of class. And despite all that, I had a heart rate so fast that a medical professional couldn’t count it and vertigo that has left a nightmarish memory I may never shake.

It just seems like making it through one week of school really shouldn’t be this complicated.

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.

I love how life likes to taunt me. Every night since Saturday, I have thought to myself, today I experienced the worst pain I’ve ever had. Surely it’ll get better tomorrow. And so far? that has not once been the case.

I had a 10:15 appointment for a physical today. This physical was to make sure that I was fit to have my own blood shot into my own back. The concept escaped me completely, but for pain relief I was more than willing to jump through any and all hoops necessary. Especially since the neurosurgeon’s nurse had called me at 8 in the morning to say that they could do the blood patch on Thursday instead of Friday if and only if the entire physical, including the bloodwork, was done and faxed to their office by 4.

No pressure (ha, no pun intended).

Of course I knew that getting a physical today was going to be a challenge, what with standing up being the instigator of almost immediate pain. But I had no idea. When I got to the office, just sitting in the waiting room was awful. Getting my blood pressure taken, was horrific (and for proof? My blood pressure, normally no higher than 95/60 was 110/80. Um, yea. PAIN). I finally got to lay down on the exam table, but the relief was short lived.

This physical was not what I had envisioned. I assumed it was listening to heart and lungs, poking the belly and a few blood tests. Um, no. Fail. It was a 12 lead EKG, a chest x-ray, lots of blood work and the listening and poking. In all, it took 2 hours upright to get it all done. At the end, I honestly thought I might pass out from the pain. As I laid on a cement curb waiting for my mom to drive the car up, I wondered if I would even make it through the 30 mile ride home.

I did. But when I tell you that I’ve never felt pain like that before, I’m not exaggerating. It was nothing short of torturous. It was the deepest, darkest circle of hell.

I got home, took drugs and laid on the couch, afraid to move a muscle. The pain eased, I was finally able to eat something and things were looking up. The morning was awful, but the end was in sight. Relief was in sight.

And then at 3:30, the neurosurgeon’s office called. They had everything…except the one thing they really had to have. The bloodwork. You know, that part that told them if my blood would even clot enough to make this work at all.

So I called my primary care doctor’s office to find out if they had it, they didn’t know. They would call me back. The time flew by. 3:35. 3:40. 3:55. Finally I called back and they said they’d really check this time (um, don’t even get me started here).

At 4:15 I got a call that my bloodwork was done, they would fax it right that instant. I quickly called the neurosurgeon’s office to tell them. No one answered. Not the nurse. Not the nurse practitioner. Not the receptionist even. I was crushed. I had suffered for hours for nothing. They had told me this morning that if the patch couldn’t be done on Thursday, they weren’t sure when it could be done.

I was devastated.

At 4:30, I got a call. My caller ID showed that it was the hospital and the man introduced himself as the interventional radiology department’s appointment scheduler. I braced myself for the worst, knowing I’d missed the deadline and not knowing when they might have scheduled the blood patch for.

And then, it finally happened. I caught a break.

Tomorrow at 2pm, I will get a blood patch done by my neurosurgeon (this is important because my neurosurgeon is literally like THE MAN who studies and pioneers better blood patches. He’s published articles upon articles about high volume patches and how effective they are).

I will have to fast all day (if you see me tomorrow, turn around and run the other way. I’m a little like The Hulk. You won’t like me when I’m hungry) and it will probably hurt like hell (you know, what with the other two big holes in my back already), but it might fix this pain.

It might mean that tomorrow is the last day where I am afraid to get up and pee or where I have to ask my mom to pour my Diet Coke into a cup with a lid so I can sip it lying down.

We will trek the 50 miles tomorrow to the very same hospital I have been admitted into for the past two Fridays, and I will have the 3rd needle shoved into my spine this week.

And I will pray that this one, this third one, is finally the charm.

Oh. My. God. This day has been the opposite of what it needed to be.

I called the neurosurgeon promptly at 9 and left a message with the nurse practitioner, explaining that I went to the ER and had the blood patch which didn’t really work. I gave her my cell phone to call, because I don’t know, I guess I thought I was going somewhere. Or because I’m stupid. Whatever.

At 10:55, my phone made a noise. A noise indicating that while it didn’t ring, I had a voicemail.

Of course it was from the nurse practitioner and of course when I called her back less than 2 minutes later she didn’t answer. I love my iPhone, but I hate AT&T coverage with a conviction that borders on sacrilegious. If Apple announces tomorrow that their iPhones will be useable on the Verizon network, I will go out, pay whatever enormous fee AT&T wants and run for my life.

Ahem. Anyways.

And so I waited. And waited. And cried. And called. And waited. And called. And waited.

At 3, I got a call from the nurse practitioner. The neurosurgeon wants to do another blood patch, a much higher volume one (for those who missed the blood patch explanation last time, it’s when they take blood from your own veins and inject it into the area just outside your spinal canal (the epidural space) and then it clots and closes the hole where the spinal fluid is leaking) to seal this leak for good.

But, this can’t happen until:

a) I got an get a FULL history and physical. Um. What the hell? It’s my own blood. Are you afraid I’m going to give MYSELF something? REALLY? I understand checking my clotting factors, but a full physical? So I have to ride for a solid hour in the car tomorrow morning to get to my student health center to get a physical. And let’s not forget that we’re doing this because I can’t even sit up for more than about 2 minutes at a time, but yea, let’s go ahead and do a fucking physical.

and

b) We wait a few days. Because the blood that was shot into my epidural space yesterday has to absorb some so that there’s room to shoot more in (more needles in my spine. HOORAY!). And if we don’t give it time, the blood might not go to the right place and then this big fucking circus will be for nothing. Which you know, only sounds EXACTLY like something that would happen to me.

So the nurse is going to see if she can schedule it for Friday.

FRIDAY.

In case you were keeping track, that’ll be six consecutive school days I’ll have to miss if they can even get it scheduled for Friday. If not, we might be waiting until Monday. If we’re waiting until Monday, I just might lose my mind. Oh wait, too late.

My twitter stream, much like my attitude, is a little toxic today, and I apologize for that. I’m doing the best that I can. But right now the best that I can is being bitter and in pain. I’m tired of always having the unexpected complications, I’m tired of the worst case scenario always being the only scenario.

I’m tired.

After the disastrous first attempt at the myelogram, I had steeled myself for drama at Friday’s lumbar puncture and imaging festival. I just refused to believe it would actually happen. I mean really. It’s me we’re talking about here.

Much to my dismay, it went perfectly. The lumbar puncture was pretty uncomfortable, but I didn’t have a reaction to the contrast, I didn’t have a seizure and we made it out relatively unscathed. All things worth celebrating for sure.

But wait, there’s more.

When they did the lumbar puncture, they measured my opening pressure. The only other time they measured it, it was borderline low at 8. But that time my “fabulous” neurologist didn’t actually write anything down, so we had no record of it. It was basically my word and the new neurosurgeon who’s unassociated with the old neurologist really had no idea what to think.

Friday it was 4.

FOUR.

8 is barely low, 8 is the lower cut off for normal range opening pressure (on the scale these doctors use). On Friday they did the puncture under fluoroscopy so there was no doubt about it being user error or crappy techniques. And I measured an opening pressure of 4.

I am not crazy.

Did you hear that? I AM NOT CRAZY.

Friends, that is called vindication.

However, vindication evidently comes at a steep cost. Because by around 8pm on Saturday, I noticed that my head didn’t feel normal. I was getting up a little more since my 24 hours of flat lying had passed, but it seemed like the pain was growing. I tried to shrug it off. Last time I got a spinal headache it was well beyond 48 hours after the puncture and I was barely at 30 hours post puncture then.

Yea, well, my body doesn’t really give a shit how many hours it’s been. I have a spinal headache.

And I know I bitched about how bad it was last time and I know I complain about how much my head usually hurts, but holy shit, this is by far the worst headache pain I’ve ever had. In fact, it exceeds the worst pain I ever thought imaginable. When I stand up, it feels like my whole head is in a vice. A vice dipped in scalding hot battery acid. Scalding hot battery acid that weighs 800 pounds and pushes my head down to the floor.

It’s bad. It’s really really truly really bad.

I didn’t sleep much last night because of it. I couldn’t lie on a pillow, but in my sleep I kept grabbing it. It took much longer for the pain to go away when I went back to flat, which made it hard to find any rest at all. I couldn’t even have my computer screen on because the light was too bright.

When I got up this morning to pee, I thought I might hurl, the pain was so awful. And so, when the clock struck 9, I called my neurosurgeon’s office. They patched me through to the neurosurgeon on-call and I told him what was going on. And his response, in the most dismissive tone I’ve ever heard was, “well, then you should probably go to an ER.”

No compassion. No concern. No help. Just go to the nearest ER and see if they had an interventional radiologist around on a Sunday morning who could squeeze me in for an epidural blood patch. No worries about how I can’t even sit in a freaking waiting room because the pain makes sitting up a freaking nightmare. No worries about making sure I’m okay. Just go to an ER and leave him alone, essentially.

I talked it over with my sister, my husband and my mom and we came to the conclusion that it would be best to give it one more day. There were a lot of factors, but mostly we figured the ER would be busy and there was a good chance that there wouldn’t be a qualified radiologist around to do it.

So my mom is on her way to Los Angeles now. Tomorrow I will call my neurosurgeon’s nurse and see if it would be possible to schedule a blood patch at their hospital so the waiting could be minimized. If not, we’ll go to the hospital a few miles away and wait it out and hopefully get this fixed. I am beyond frustrated to be missing so damn much school already. It’s not fair and it sucks. But more than that, I can’t tolerate this pain.

I’m pretty strong, I have a pretty high tolerance, but this is just horrific. This is pain that I hardly believed existed.

This is hell.

But despite the pain, despite the guilt over missing school and wasting more of my family’s time, I have evidence that something is wrong. I have proof that it’s not all in my imagination. I have a documented objective sign that we can’t give up yet.

I may be in hell, but I have hope again. And that will see me through.

This morning, I left my sister’s condo at 7:30 to drive to the hospital. We made it exactly at 8:30 and got to admissions. I was taken back to the presurgery area, asked 200,000 questions and then waited for my transfer to the interventional radiology room.

At 10:30, I got on the gurney underneath a wonderful warm blanket, rode the elevator to the 8th floor and was driven into the room. On twitter, I jokingly called it the “room of doom.” I had no idea.

The doctor introduced himself, took a look at my chart and then asked me a question. You see, on Thursday a nurse had called to ask about my medications. I told her of the 2 that I was currently taking (I have prescriptions for a pajillion, but these 2 are the only ones I really take.) I hadn’t taken either of them in a few days when I spoke with the nurse and she said they were both okay.

Myelography is challenging because the contrast that is injected lowers the seizure “threshold” so any medications that have a similar effect, have to be discontinued 48 hours before, otherwise the risk of seizures can be too high to be safe.

You see where this is going right?

I took one of the two approved medications last night. Only the nurse was wrong. It wasn’t okay. It was a seizure threshold lowering drug. And I took it.

And so at the 11th hour, while I was literally moving to the table to start the procedure, they cancelled it. They CANCELLED it. I have waited 10 days for this test, we found a perfect time, on a Friday before a 3 day weekend, we worked out incredibly complicated plans with family and friends to get me taken care of while my mom was out of town and my husband was on call overnight. (Before I get the hate messages, of course I’m glad we caught it and avoided a seizure. But ALL OF THIS could’ve been avoided and that is incredibly frustrating.)

And it was all for nothing.

Fucking nothing.

So now I have to do it again next Friday. I have to miss the exact same freaking classes, to be at the hospital at the same time, to go through this procedure that I should already be finished with. It’s like I’ve gone a week back from square one.

The nurse apologized, and I appreciated that, but I am just upset and sad and frustrated. I wanted to get this finished and behind me. I wanted to minimize the time I missed in school, I wanted to minimize the disruptions to my life. And this is the profound opposite of all 3.

I tried so hard to keep a positive attitude going into this test. I just wanted to get past this. I wanted to get answers, and now they are at least another week away.

It may seem silly at this point because after 5 months of headaches one week really shouldn’t mean much, right? But it does. It’s 7 days, or 168 hours, or 10,080 more minutes of pain. It’s 7 more sleepless nights. It’s 7 more excruciating mornings of getting out of bed when my body wants nothing more than to stay horizontal all day. It’s 7 more days of slapping on that happy face and pretending it’s all okay. It’s not all okay.

This is not how today was supposed to go.

This is not how my life is supposed to go.