It has been a rough day.

I woke up at 4 in the morning with a MASSIVE headache. It was the kind of pain that makes you pause and wonder if the world is ending. The kind of pain that makes it hard to breathe, hard to move. The kind of headache that makes you sit up at 4 in the morning and wonder if you have freaking meningitis. That’s how bad it was.

I managed to shove some pills into my mouth to deal with some of the side effects of the headache (because there’s just nothing that helps the pain) and I attempted to go back to sleep. At best, falling back to sleep would’ve been tough with that amount of pain, but when you add an adorable little cat who really believes that 4 in the morning was the most perfect! time! ever! to eat and in protest of not eating decides to climb in and out and in and out and IN AND OUT of the blinds 20 million times, well, sleep is nearly impossible.

That did not make the day any easier.

Looking at this month, I’m starting to worry. I haven’t had this many bad days in a long time. It doesn’t seem to be related to stress, especially considering my weekends are every bit as bad as my weekdays. It doesn’t seem to be related to difficulty of work because light days are every bit as bad as difficult ones. It doesn’t seem to be related to anything.

But it’s getting worse. It’s getting a lot worse.

The headache I had in the middle of the night last night was the worst headache I’ve ever had that wasn’t the result of a lumbar puncture and subsequent spinal fluid leak. It was terrifying because it came out of no where and awakened me from a dead sleep (again, about having a freaking baby. My subconscious has SUCH issues). Thankfully the pain did go down some and I was able to go to work, but all day I have felt miserable. All morning I felt like puking, and all afternoon I’ve just wanted to sleep. Or cry. Or both.

I don’t know what to do at this point. I don’t know where to go, who to call, what to try. I don’t know how to manage when the pain is like this. I made it through the day today, but it was by far the toughest thing I’ve done in a long time.

I can’t keep doing this. For the first time in a while, I’m genuinely scared of tomorrow.

To my very core, I’m terrified of that pain, of this pain. Of more pain.

She was near to my age, lived near me and well, the more I read on her chart, the more I found that we had in common. This girl who was so much like me on paper, was also obviously in a lot of pain. She later told me that on a scale of 0 to 10, her pain was a 30. And you know what? I believed her. There are many people who say their pain is a 12 out of 10, and it’s not that I don’t believe them, but I often wonder if I could tolerate their pain. You know? I wonder if their 10 is the same as my 10.

Not this girl.

I looked this girl in the eye and I saw bits of myself. I saw sadness and defeat. I saw hope that was dwindling, but still present. But I also saw pain that if I’m lucky, I will never understand. I saw hardship that she doesn’t deserve, that I’m not sure she can handle, that I’m not sure anyone can handle.

I wanted to take her hand and tell her all about the chronic pain resources I know, about all the wonderful people on the internet, but I couldn’t. I couldn’t for a number of reasons, but mostly because I was so completely beside myself that I couldn’t hardly utter any words besides the ones I have rehearsed in my head hundreds of times for patient interviews.

I looked this girl in the eye, I heard about her pain and I wanted to cry. I wanted to cry for her. Because I saw the fear in her eyes, and I just sat there, feeling impotent. Feeling helpless. I can’t help this girl. It’s entirely possible that no one can, but I’m going to have to be one of the first to break that reality to her.

The more I’ve thought about this girl, the more I’ve considered what happened today, what she told me, what I heard and saw, the more I understand some of the reactions I get from people, from doctors, from my own family. I saw someone suffer today. I had someone tell me that she’d do anything to make her pain stop, I had someone say to me sentences that I’ve said to others, that I’ve written here in my most desperate hours.

I understand things now.

I understand why people walk away from those in pain. It’s terrifying to watch someone shrink from pain. And it’s soul crushing to not be able to do anything for it.

I understand why doctors fire patients, why some respond to chronic pain patients the way they do. It’s horrible to see something you don’t know much about, that you can’t fix. That no book or lecture can ever help you understand the realities of.

I understand why family and friends cry for those who are suffering. It’s because sometimes it’s all you can do.

I am not saying that I understand this girl’s pain, because if I put my pain on the same scale as hers, even tonight when it’s relentless and gnawing, I don’t think that it would hold a candle to hers. But I understand a lot of what she’s feeling right now, and some of what she’s gone through and will soon face.

And for the first time, I understand how it feels to watch someone suffer. I understand how helpless you feel when you stare pain in the eye and have no answer, no help.

I understand now.

I almost wish that I didn’t.

I saw the new doctor today. She’s a neurologist and a pain management specialist. I’m not over-stating things when I say that she’s really my last shot at getting this fixed. I’ve gone to 5 neurologists, 2 neurosurgeons and an ear, nose and throat doctor. There’s no one left to see.

I had to wait for a little under an hour for my 2:30 appointment, but I was rewarded with almost 2 hours of one-on-one time with the doctor. She was very kind, she hugged me (side note: I’m not really a hugger), and she started taking a very thorough, if a little scattered, medical history.

She asked me what I was in school for and when I told her she got a funny look on her face. And then she looked and me and said, “I think that’s a bad idea.” It was her belief that I could not be successful at this career with chronic pain. I explained to her my plan and how it was important and my passion and all that, and she just nodded and said she wished I’d consider it. That she really thought that I should quit school.

To say that was discouraging would be a vast understatement.

She moved on. We discussed my pre-surgery headaches and symptoms, my post-surgery symptoms, she looked at a few MRIs and then she did a neurological exam which proved interesting. There are a series of tests where, if positive, point to a problem in the brain or spinal cord. And I had all of them. Yet, as she explained, there appears to be nothing wrong with my brain or spinal cord (well, almost, I’ll get to that shortly).

When we finally went over everything she looked me in the eye and said she didn’t know. It looks like I might have a syrinx in my thoracic spine, but that shouldn’t present itself as these headaches, so while interesting, that’s kind of useless.

She said, in a slightly nicer way, that I am a mess, and that all she could really do was “grasp at straws.” On one level I appreciate her honesty. I’d rather know that you’re stumped than have you pretend like you know what you’re doing when you don’t. On the other hand, fuck. 10 months and still no answer.

I’m not sure how I ended up with that expectation, but somehow I’d gotten it into my head that this would be it. That she would do this history and physical and the answer would lay right before our eyes. That there would be a diagnosis that fit and a treatment that had a good chance of working. That this doctor, this appointment, would be it.

It wasn’t.

She prescribed a medication that scares me. It raises my blood pressure and that should theoretically raise the pressure in my head. And since we’re still assuming that the problem is low brain pressure, it’s sound physiological reasoning.

The scary part is in the the blood pressure part. Blood pressure isn’t something that you really play around with. Our bodies don’t tolerate big changes well and the effects of increased blood pressure can be catastrophic, to put it mildly. And nevermind the fact that it’s almost guaranteed to make me puke in the mornings. Which is obviously something I want to deal with right now.

The thing is, I think this doctor is actually good. I think she’s probably excellent at what she does. It’s me that’s the problem.

I went to a headache clinic and I walked away with straws.

I have had a headache for 10 months that no one, not experts in their fields, not neurosurgeons who have published dozens of papers, not anyone, can understand or treat. This drug may work, it may not. Either way, I’m still walking away with no clear idea of what’s wrong. I can’t take this medication for life, I can’t rely on it to fix all my problems. It’s a patch on a tire that’s blown out. It’s a bandaid on a severed carotid artery.

I feel like I’ve been punched in the stomach for the thousandth time. I don’t know how many times I can go to doctors and be told that they don’t know. How many times I can be told that my case it too complicated, that there isn’t an easy answer. I don’t even really need the answer to be easy, just any answer that might actually be correct. I would take any diagnosis, literally ANY one today, if it meant we had a plan, that someone else, anywhere else, had ever been through this and came out the other side.

At this point, I feel so hopeless I can hardly even function. I want to wallow and cry. I want to quit school like the doctor suggested and give up everything. I can’t keep doing this. I can’t keep fighting. I can’t keep being told there’s no answer. I can’t.

There has to be an answer.

I just don’t think that we’re going to find it.

And now I guess I have to try and make peace with that.

I don’t handle bad days particularly well on a good night of sleep, but on less than 6 hours of crappy sleep, it ended up being just one ingredient in a recipe for failure.

I got ready and went to school despite the stomachache. The whole morning was just off. The details and reasons aren’t important, but I just felt, well, invisible. And I left school feeling weighted down. I hoped it was just the tired and moved on despite it.

I raced to the imaging center near my neurosurgeon’s office to pick up the last set of MRIs that I hadn’t gotten so that I could give a mostly complete to the new neurologist. From there, I went to the new doctor’s office, but for all that racing, was an hour early.

So I sat down at a coffee shop and did some studying.

My appointment was at 1:45, but since I hadn’t gotten the packet of paperwork I was supposed to get and fill out prior to the appointment, I decided to head in early so I could get that taken care of. At 1:15, I walked to the office door, only to realize that, oh hey, they had moved to a different building. A different building several miles away.

GAH.

So I (paid for parking and) got in my car and drove to the new office, hoping the traffic wouldn’t have picked up in the thirty minutes I sat wasting time. And the more I drove the more I realized that these streets looked an awful lot like the ones I had been on when I went to pick up my MRIs the first time.

And well, as it turns out, those were the very same streets. Because basically I drove around in a giant almost circle. Sigh.

I wish that this is the part where I told you all about how the new doctor turned my crappy day around. I really do. But I’m not going to, because I’m not feeling like writing fantasy tonight.

I found the office and tried to check in. I say tried because apparently I didn’t have an appointment. According to them, I had never called, never given all my information, never set up this appointment or had to rearrange a whole bunch of school stuff to make this work. Nope, never took place.

And instead of giving me the benefit of the doubt, instead of offering to squeeze me in or make it work, they made me feel uncomfortable. Before long, I felt shame burning on my cheeks. The more they sighed and looked for any information about me, the more I found myself doubting what I had done. Wondering if I had constructed the whole thing. And before I could stop myself, I was apologizing, in front of them, with tears in my eyes.

In the end, I filled out a piece of paper with all the information I had already given them and was given an appointment next Wednesday. And then I drove home, in the same pain I arrived in, with big heavy sobs of frustration and hopelessness.

It’s already difficult for me to find hope right now. It’s difficult for me to see the light at the end of this tunnel. And yet, last night, I let myself do it again. I let hope in, I let myself wish, for just a moment, that things were going to change starting today. And just like every other time, I am left feeling devastated.

I can’t keep doing this. I can’t keep trying to be positive, to be optimistic when it just results in my hopes being shattered again and again. I can’t keep dreaming of all these wonderful things because when faced with reality, it’s crushing.

I’m done putting myself out there just to be hurt. I’m done wishing, I’m done hoping for more. There isn’t anything more. Even things that seem like they’re a sure thing, aren’t. I should know that by now.

And maybe this day will be what sets me free, what stops the emotional hurt from piling onto the physical pain.

Because I’m done.

Tomorrow is another month in the bank of perpetual headaches. Ten months of headaches tomorrow. Ten months. I live this every day and I still can’t hardly believe that it’s been 10 months since this all started.

Tomorrow is also my appointment with the latest neurologist who also happens to be a pain management doctor. I’m hopeful, but I’m trying to temper my hope with reality. I think that I’m on the right road, that this doctor, unlike some of the others, may be able to afford me a balance between not giving up on finding/treating the cause of the pain and also dealing with it in the meantime.

I also know that it won’t be that easy. It rarely is.

Look at a list of medications for chronic pain. Chances are I’ve tried them all. Some more than once.

Look at a list of suggestions of ways to mediate pain without medication. I’ve tried nearly all of those too.

The options seem very narrow. I am sure that there are ones I don’t know about, I’m not a doctor (I just play one on twitter a lot of the time) but I’m trying to be a realist.

I want this to work, I really do, but I also know that if history is any indication, it very well may not. I’ve seen five neurologists since my Chiari diagnosis in 2006 and only one (and maybe a half) of them have ever taken me seriously, haven’t completely given up, or told me I needed to find someone else because they can’t help me. That track record doesn’t exactly inspire endless hope and optimism.

But even I recognize that tomorrow holds potential. It holds potential disappointment and potential success. It holds potential to wallow in an another month of pain without relief, it holds the potential to be the start of the end of the pain.

I’m scared, and sad and hopeful and humbled by tomorrow, by what it means, by what it might hold. And for tonight I’m going to try to stick with the hope that in marking 10 months with a new doctor, I might also mark the end of this onslaught of pain. The end of nights like two this weekend where I lay on my couch in tears. The end of blog posts mentioning that another month has past, that another month has been lost to pain.

Tonight, the potential of tomorrow overwhelms me. We’ll see what the reality is all too soon.

And yet, that’s exactly what I’m going to do.

I’ve spent hours researching, combing through articles, trying to find literature that gives any evidence that I have a spinal fluid leak. But simply put, there aren’t any articles, there isn’t any evidence. My symptoms do not match up with a leak. The protein in my CSF isn’t high, the headache has lasted for over 9 months when a leak should resolve on it’s own much, much faster.

And most importantly, the other patch didn’t stop the pain. I think that the brief partial relief of that patch was almost entirely because shooting that much blood into my epidural space caused my pressure to increase. Which makes sense when you realize that as soon as the back pain from the pressure went down, the headache came back. It basically makes perfect sense.

I have intracranial hypotension, but I do not have a spinal fluid leak. My brain is what’s wrong. I’m not producing the adequate amount of spinal fluid, and that’s why my head hurts.

And that’s really why I’m saying no. Of course, I also don’t want to give up my only 4 days of vacation between semesters to an incredibly painful procedure. I don’t want to spend the thousands of dollars that this procedure costs. I don’t want to deal with the side effects and extra pain that isn’t helping me in any way.

And if I’m being completely honest, I don’t want to exhaust this option. I don’t want another treatment to fail. Because it means that there’s almost nothing left we can do.

And yet I’ve spent hours today, in tears, because the alternative isn’t good either.

My insurance only allows one referral per specialty per year, and I’ve already used up my neurologist and neurosurgeon this year. Going back to the old neurologist is not an option because she’s already thrown her hands up in confusion with my case. And going back to the neurosurgeon right now isn’t really an option either. He has given me 3 choices, and frankly, none of them work for me right now. It’s not his fault, he’s doing everything he can.

So what this boils down to is that I’m giving up. For now.

I am not saying that I’ll never try again. I’m not saying that I’ve given up all hope of ever having a pain-free life.

But what I am saying is that I need a break. The treatments are becoming almost as bad as the headaches. And when they don’t improve the headache, then it’s just extra pain for no reason. I cannot bear more physical or emotional pain right now. I just can’t.

I know several of you are mad at me, disappointed with me. And I get it. Yes, I would fight harder for others I love, no, I wouldn’t let them quit. Yes, that makes me a raving hypocrite, I’m aware of this.

But I’m tired. I can’t fight anymore. I don’t have the energy, I don’t have the sanity, I just can’t.

And I hope that you can understand that if I thought there was another option that didn’t take even more of me right now, I’d do it. But there isn’t.

Yes, I am very intentionally closing this door to this treatment. And now I’m just praying that somewhere, somehow, a window of relief will open soon.

And so, when I saw the 85% in the gradebook, I was crushed.

Logically, I know that an 85% is fine. It’s passing by a wide margin and I’m glad for that, really I am. But I can do better, I have done better.

Today is the second consecutive day of class I’ve had to leave out early because of pain. I did everything I could both Friday and today to make it through to the end, but I couldn’t. The headaches are escalating, and my ability to cope isn’t keeping up with the changes in pain. I’m a mess. A weepy, tired, sad mess. And I am so frustrated, so in pain, so tired of all of this.

It’s not fair. There, I said it. I know it’s a kindergarten response, but today, I feel like a kindergartener. I have no control over anything in my universe. I can’t even go to school all day.

And the more this happens the more I find myself constantly thinking about how things would be if it weren’t for this headache.

I got an 85% on that test, not because I didn’t know the material (I did), but because of little mistakes, little mistakes that I never would’ve made 8 and a half months ago. And because of that, I am overcome with questions. With hypothetical wonders.

I wonder what my grades would be like if I didn’t have this headache, this life sucking vortex, this sleep stealing pain. I wonder if I would be more confident, and less stressed. I wonder if I would stand out as a competent student instead of as the girl that needs accommodations.

I wonder what my marriage would be like if I wasn’t in pain. I wonder if I would be a better wife, if I would do more of the things I always envisioned myself doing. I wonder if I would cook dinner with more regularity, if I wouldn’t cancel plans as often. I wonder if we’d fight less, if we’d be happier.

I wonder what shape I’d be in if I wasn’t in pain. I wonder if I would be exercising, if I’d be fit like my classmates. If I’d have a trace of muscle, even with the 2 month lifting restriction. I wonder how much energy I’d have, what I’d do with it. I wonder if I would spend as much time lying on the couch.

But mostly, I wonder who I’d be.

Because what I am today is so far from anything I ever imagined, that I’m practically a stranger to myself.

Many days I can cope with this change, with being this stranger. I can maintain some level of hope trust that things will get better, that frankly things HAVE to get better. But today, like many of my most painful days, it is a struggle. I don’t know how to keep moving forward when things aren’t improving. I don’t know how to push through when there’s no end in sight. No matter how hard I try, I just don’t know to keep my chin up when things are only, are always, moving down.

I find myself facing the worst wonders of all. I wonder if I’ll get used to this life. I wonder if at some point, I’ll stop caring that my life, my future, has been completely changed.

I wonder if this is who I am, for “good.”

This is sort of how I feel in life too. Like I’m crossing the threshold from being a daughter, wife, sister, friend, etc, to being a burden. Some days I wonder if I’m contributing much besides trouble and tragedy. And often I think the answer is no.

But even when I put on a happy face, or choose to write a light-hearted blog post instead of a harder one that’s rolling around in my mind, I don’t stop living this tragedy. This drama festival.

Tomorrow will mark 8 months since my head started hurting. Each month, each silly milestone, shocks me a little. I’ve lost two-thirds of this year to pain and unlike last month, there’s no end in sight. There’s no treatment shining ahead. There’s no hope this month, this milestone.

Instead, there’s a sense of seriousness. A sense of permanence.

This is my life.

I’ve found myself concerned lately with what this new reality means for my family, for my friends, for my relationships with those people. It’s one thing to have a friend who is temporarily ill or in pain. It’s not easier, that’s not what I’m saying at all, because I don’t think that’s how pain and sickness work, but there’s an end to most conditions. If you wait it out, things usually normalize. It seems like it’s becoming obvious that this isn’t normalizing. Or rather, it is, but this headache is now the norm.

I’ve always been one of those people who said that if people walk away from your life then they weren’t meant to be in it in the first place, but at no point had I wondered if maybe it’s the other way. Maybe if you can walk away from someone, they aren’t worth staying for. That maybe it’s not really them, maybe it’s me.

With all these new worries are the normal ones. The worries about school, about holding down a job in the future. It just seems like as much as I want things to get easier and want life to become less complicated, the less it actually works that way.

What I want more than anything is a break. I’m tired in every way. I’m not sleeping well again, which has made all the little things seem so much bigger. I’m tired of fighting all the time. I’m tired of feeling hopeless. I’m tired of pain. It’s not like I just need a nap in the afternoon and everything will be better, it’s like I need a nap from my life.

But that’s clearly not an option, so I continue to fight and move forward in spite of my fatigue.

I have managed for 8 months, and though it seems harder every day, I’ll continue to find a way. I am discouraged, sad, and tired. But I’m not defeated.

Not yet. Not this month.

On the one hand, I was prepared for this. I knew it was a possibility and I wasn’t really surprised.

But on the other hand, I am frustrated. After having 5 full days of diminished head pain, I’d be lying if I told you that I’m not disappointed right now. That getting to have those less painful days didn’t make the return to pain just that much harder.

I have been struggling with what to do now. What I didn’t really mention a few weeks ago after my last doctor’s appointment was that I was given another treatment choice. But the other treatment involves several days in the hospital, would be incredibly expensive and force me to miss more school than I can afford to right now. But that said, it also is potentially the only option that we have left.

I can’t afford to spend that many days in the hospital or miss that much school. I can’t afford the bills that will come with this treatment.

But as I sit on my couch in so much pain that I can’t study for either of the quizzes I have to take tomorrow I just wonder if I can really afford not to.

More than anything right now, I want to kick myself for getting my hopes up. I know that many of your are ardent believers in hope, but so far it’s gotten my nowhere. It’s gotten me to disappointment, tears, frustration. It’s gotten me here, on my couch, feeling like shit and wishing that I’d never had this blood patch in the first place.

I know that I can function like this, I know I will be fine. But I also know that I want more than that. And maybe that’s selfish and wrong, but I want more than this life I have right now. I want more than lying on my couch night after night, feeling too tired and in too much pain to spend real time with my husband. I want more than having to skip days of school because I just can’t manage through the pain.

I want the life I had a brief glimpse of last week.

I just don’t know how much I’m willing to sacrifice. The truth is that I’m drowning in school a little. I am passing everything with As and high Bs, I’m in no danger of failing right now. But my concentration is so diminished because of the pain, because of the sleepless nights, that I worry that at some point failure isn’t just going to be a fear, but a reality.

But I just don’t know if missing a week of school for this test/treatment my neurosurgeon suggested is worth it. If it doesn’t work, I’m not at square one, I’m a week and thousands of dollars behind square one. And I feel like this is an impossible decision.

And it’s one that I’m not prepared to make today, but one that I can’t get out of my head either. It plagues my thoughts, my conversations, many of my waking moments.

I’m terrified I will make the wrong one. I’m scared that the procedure won’t work, that I’ll waste time and money. I’m scared that it will work but the time sacrifice will be too great. I feel like it’s a no win situation, like no matter what I choose, something will suffer.

I’m scared.

And I’m tired of fighting.

First, my back has been a disaster. This blood patch was done higher in my back and more blood was inserted than last time, so the recovery has been harder. Today is the first day I haven’t been in near tears levels of back pain, so in that way, it’s been really difficult to actually determine my head pain in comparison.

The other reason is because I don’t think I really know what is actual effect of the patch and what is the psychosomatic effect of it.

All that said, since the blood patch, my head has been noticeably better.

As much as I want to tell you that I’ve had pain free days and am living a headache free life, that’s just not the reality. There’s a small part of me that is a little disheartened, but mostly, I am thankful for the improvement I’ve seen.

A lot of people have asked if it’ll get better as time passes. The truth is, probably not. This may very well be as good as it gets.

Ever.

And that reality is a little tough to face. There are a few other treatments, but they are more involved, more painful, more expensive, and not necessarily more effective.

And so my attention now gets focused on learning to live this life. This one that may or may not be filled with pain. This life filled with blessings and challenges. I have no other choice but to keep fighting, keep pushing, even with and through the pain.

I’m not going to give a big speech about how I’m not going to whine ever again. Or how I won’t have pity parties. Because let’s be honest, I will whine. I will have pity parties. But what this week of reduced pain has shown me is that I can manage. Even at my worst, I was managing, coping, functioning.

And so that’s what I’ll continue to do now.

I may not ever feel better than I do tonight. I might wake up tomorrow and be back at the most extreme levels of pain. There is no way to know, no way to predict, no way to prepare.

But for the first time, there is acceptance.

I’m Katie. I’m a 26 year old graduate student. I’m married, I live in Southern California.

And I have chronic pain.