Archive for the ‘The Brain’ Category

I get called a lot of things on the internet by a lot of people. By far, the one that stings the most is being called a whiner. And part of the reason why it stings is because it’s true. Unquestionably. I whine. Yesterday my twitter stream read like someone’s with no coping skills, and part of that was because I was FRESH OUT OF COPING SKILLS. Pain has that effect on me. Pain makes me totally lose sight of when I’ve crossed the line from sharing to whining.

And it’s kind of funny because in real life, I don’t complain much out loud about my pain. My physical therapist asked me how my head was yesterday and while the answer in my head was “fucking terrible” the words that tumbled out of my mouth were “not so great.” When I got home and put the headache on my calendar of headaches before drugging myself to sleep, I listed it as a 9 out of 10 pain. It was a tremendously big headache, one of the top 5 not caused by a lumbar puncture. I can tell you here that it was an incapacitating headache, but for some reason, when it comes to saying the words out loud, I cannot even describe them, let alone whine about them.

I think part of it is because I assume people won’t believe me. I mean, I was upright, walking around yesterday. I know that telling my PT that my headache was 9 out of 10 would’ve made her think I was nuts, even though it legitimately was that bad. And though I always want to qualify my statements by adding that I have a high threshold for pain, I also know that no one ever really believes that, no matter how compassionate. They smile and say I know honey, and then secretly think, yea, okay.

I think that in refusing to tell people, refusing to tell doctors and other health care professionals how bad the pain gets is maybe hampering my recovery. I tell them that it’s incapacitating. I tell them that there are days that I can’t get out of bed. I tell them those facts, but I don’t tell them that I sometimes wonder if it’s even worth being alive to have that much pain. I don’t tell them that sometimes I think of how much I’d have to hurt myself to make something else hurt worse than the headache, and consider if that would be a better thing to do than lay in bed wanting it to end. Because literally, that’s how severe it gets.

I’ve never articulated that to a doctor. I texted my husband yesterday that the pain was scaring me, but when it came to saying it out loud, I just told him it was bad. For some reason, I cannot let the words pass my lips. It’s as if when I say it out loud, it becomes really serious instead of just serious. Like it’s impossible to ignore it once I tell even my husband that I’m scared of how badly my head hurts.

And so yes, I am a whiner here, I admit it. I’m a whiner on twitter, and on facebook sometimes too. I whine there because I don’t know how to speak the words out loud. I whine to people I don’t know because I cannot tell the people around me the truth. I whine through my computer because I haven’t found my voice in real life, because I’m afraid that if I tell someone how bad it is that they won’t believe me. That they will brush me off, or label me as crazy. And yes, the internet labels me as crazy all the time, but I don’t have to see it in their faces.

I whine because it’s the only way I know to end the self-imposed alienation from this pain. It’s the only way I know to say what needs to be said, to share what I cannot bare alone.

(I’d like to apologize in advance for the 800 typos that will appear in this post. I have a HUGE headache. I’m going to try to write anyways.)

I am a lot of things, but beneath most of my character traits is a common theme. I need to fix things. I need to make things right, to undo wrongs, to fix mistakes. I need to return things to previous levels of function, to prior levels of happiness. I need for all the ducks to be properly aligned at all times and if they’re not, I need to realign them.

I can’t pinpoint a reason why or a time when this started, it’s just sort of who I am, who I’ve always been.

When I fight with my husband, the fight cannot end until things are resolved. It cannot end until both sides have said what needs to be said and an agreement is made. I need things to be repaired, if not totally healed, before I can let it go. I have a hard time letting my husband stay mad, even if it’s reasonable, because then the problem is not fixed. I cannot truly rest until both of us are okay together. Sometimes this takes hours, other times days or weeks. And it is challenging.

The same thing goes for friendships too, and that has been a trying thing in the past few weeks in that regard. I’ve literally lost sleep over a broken friendship, and it’s so frustrating for me to not be able to just mend what is broken.

And it extends beyond my personal life. I think the need, and maybe in this case it’s more a desire than a need, to fix things is how I found my way into the health care field. I get to help fix people, I get to help them fix themselves and that’s a really cool thing for me. It’s also frustrating, especially when the fixes aren’t working, or when they aren’t working fast enough. It tests my patience a lot, but it’s also something I feel like I was born to do.

I think the fix it nature is one of the things that makes these headaches so very frustrating. There isn’t a fix. This boggles my mind sometimes. We have found ways to treat and fix so many things, and this cannot be fixed. I just don’t get it. I have learned how to fix many things. My husband has learned to fix many others. We are fixers. And we cannot fix this. My doctors cannot fix this. Medication and sleep and all the other things we’ve tried cannot fix this. I really just can’t quite understand it.

I cannot process that I am unfixable.

I get frustrated when a fix to a relationship issue takes a few hours, so now that we’re rapidly approaching the 2 year mark for this headache, I feel completely defeated. There has to be a fix somewhere, somehow, and I truly cannot figure out how we’ve missed it time and time again. I can’t figure out how these headaches get worse instead of better, how nothing we try even makes a difference.

I don’t know where to turn or what to do, but there has to be something. There has to be a way to fix what is so very clearly broken.

When I came to work on Monday we had a new patient on our floor who was on my list to treat. And next to her name, someone had tacked up a piece of paper with some information about her diagnosis. Apparently it wasn’t one that they commonly treat at this hospital.

It was Chiari Malformation.

I saw the woman that morning and she had some of the hallmark signs, impaired balance, headaches, lack of coordination. She was also very weak. She had had a complication after her surgery, in fact, she had the same complication I did, a spinal fluid leak, only hers didn’t heal the same way mine did. And now she was my patient, mine to treat, to help repair.

I can’t describe the feelings I have about this patient.

There are some people at the facility who think she’s faking, largely because her symptoms do not make sense. She does have some diagnosed psych issues and has some issues with confabulation, but it is still difficult to hear from doctors nevertheless. Stepping onto this side of the health care system has been eye opening, to say the very least.

I haven’t yet told her or most of my coworkers that I carry the same diagnosis, the same scar. I don’t know how to approach it. I’m afraid that if I tell her that I have the same thing, that she’ll not want me to treat her anymore. I’m afraid that it will upset her that we have the same thing and are in two completely different life positions. I’m literally taking care of her, and I don’t want her to feel like her life is any more unfair than it really is.

She does have other health conditions on top of her Chiari, which, and I know this is wrong, relieved me a little. Because without other diagnoses, I could be her. I could be struggling to stand, to walk. I could be exhausted and hurting all over, hell, some days I am. There is so much variety within Chiari that seeing it each day, treating it each day, is impossibly hard to do. I see myself in her sometimes.

And it terrifies me.

I am struggling most days to do what I do with the pain I have, so to know that my ability to function could slip away in a moment, much like this woman’s ability to work, to function at home did, scares the ever living crap out of me.

I simultaneously want to hug this woman and also run away. She represents the reason I went into this field in the first place and at the same time, all the things I’m scared of in my life, my future. I have great compassion for her, I have continued to treat her, to comfort her when she needs it, to help her as much as I can. I have no let her care suffer for my own mental issues with the situation because she is my priority at work.

But for the sake of my psyche, I’m really glad I only have 3 days left. I’m not sure how much more I can take.

So I saw the neurologist Friday. After a few minutes of him reviewing my chart (I was his first after lunch patient, so he hadn’t done it ahead of time), he asked me how I was doing. And before I could stop the words from flying out, I said “pretty freaking terrible.” I’m usually better at tempering my responses, but it was the truth.

We didn’t get as much accomplished in the appointment as I’d hoped, there just wasn’t enough time. He wanted to know about the headaches and that’s pretty much all we talked about. He was horrified when I said 20 (over 7 out of 10 on the pain scale) in April and apologetic when I told him that I had called to try to see him earlier after that miserable month. He didn’t have any theory for why they were worse later in the day, but he was intrigued by it. He was hopeful that the IUD removal would help because it can for some people, but since it’s been 6 weeks now and I’m not noticing any difference, he’s a little less hopeful.

Which was kind of the theme of the appointment, it turns out.

I told him that I had tapered off of one of the medications and he was understanding and said he probably would’ve too since it wasn’t helping. We ran down all the different meds I’ve tried over the past several years, why I stopped them (almost all were because they weren’t helping) and what the side effects were. And then he sighed heavily and looked at me.

He said that he really didn’t know what to do. He looked me straight in the eyes and told me he didn’t think we’d ever be able to medically manage my headaches. That I might just have to learn to deal with them. He didn’t mean it to be unsympathetic, quite the opposite, I could tell he was disappointed in himself at not being able to fix it. But his disappointment didn’t hold a candle to mine.

I felt like the time when I was a kid I tried to jump from a chair to the swingset, missed and landed flat on my back. The wind was knocked straight out of me. I could hardly breathe no matter how hard I tried.

To my surprise, a moment later he also said he didn’t think that surgery was the answer anymore either. Because the headaches don’t fit the high pressure pattern that my pre-surgery headaches were, he doesn’t see how another surgery would fix anything. So, I guess that’s good. Or something. He’s not sure how to designate the headaches because they don’t appear to be migraines, but they’re not classic Chiari headaches either. In the end he documented them as a remnant of the Chiari. I feel like my life is kind of a remnant of Chiari most days.

He poked around and floated a few other ideas, trigger point injections, botox, but after each one he said, “but that probably won’t help either.” In the end, he threw in the towel. He believes that there is nothing more he can really do to help me. Neither he nor his attending physician could come up with any reasonable ideas, so they’re sending me to a headache specialist. He told me that a fellow resident was starting a Fellowship in Headaches in July and if I called next week I could get in with her. Apparently it’s impossible to get an appointment with these specialists and he gave me his email address in case I had any difficulties setting up the appointment.

I walked away from the office with one prescription (a slightly higher dose of the headache med I’m still on, again with the caveat that it probably won’t help but he felt like he had to do something) and his business card so I could email him. And of course, a big headache, because duh.

I still don’t know how I feel about the whole thing. Each time he’s admitted that he didn’t know how to help me, but this was the first time he couldn’t even formulate a plan to try. That part of it makes me feel totally defeated, hopeless, freaking screwed. And though he is helping me get into see the headache specialist, I also know that there is no chance that the appointment scheduling is going to be straightforward. I envision seeing no one for months, which worries me. I am hopeful that the specialist is the right next step, but I really just don’t even know at this point.

This headache journey began for me in 2005. That was the first time I had ever seen a doctor for headaches and I feel like since then I’ve hit so many brick walls in trying to feel better. Each time I think I’m on the right path I instead find that there’s some kind of massive roadblock in the way. And each time the roadblock gets bigger and more difficult to find a way around. I don’t know at what point the roadblock is impassable.

I just want to feel better. I don’t have unrealistic expectations. I don’t expect to be headache free. I can’t expect that at this point, that would be absurd. But I have been expecting that we’d find something to make things better than the way they are now.

And now I’m just not sure what to think anymore.

Tomorrow is my next visit to the neurologist. Well, kind of my last visit, actually. The neurologist I see is actually a resident and his residency ends at the end of next week. Which is not my favorite thing ever. He’s a good doctor, he’s been thorough and thoughtful and I do not love the idea of handing off my care to someone else. He has mentioned that a fellow resident will be continuing on as a headache specialist, so my hope is that he will help me transition to her care.

I have much to discuss with him on our last visit. Primarily how crappy the past few months have been.

April was pretty much my hell. I had 20 days where my headache reached a level of 7 out of 10 on a pain scale or higher. I have a high pain tolerance, but April was a nightmare that dragged on for what felt like forever. May was 14 of those headache days and June has been 10 so far. The last time I was at the neurologist he was really pleased that I was down to 10 or fewer bad days a month and well, something has happened since then. I truly do not know what. I stopped a medication that we were trying out, but that was well after the April and May disasters.

We will also need to discuss the tremors. The tremors that I really believed were a consequence of a medication. The tremors that I still notice with certain movements, even though I’ve been off that medication for a month now. I think they are better, but they are not gone and I’m equal parts displeased and concerned.

Next up will be the dizzy/disorientation spells. They took a hiatus for a few months and now I get them whenever I get dehydrated. But very mild dehydration (I’m talking like a day where I get 40oz of water instead of my usual 64oz) shouldn’t cause me to lose my vision and become disoriented while sitting completely still. It makes no sense and it’s not real dizziness. The world isn’t moving around me, I don’t feel like I’m moving, my vision just shifts uncontrollably. I can’t describe it well, it’s scary and seems to be happening more lately.

We will need to discuss why my headaches keep growing during the day such that by the end of most days I’m useless with pain.

We need a plan, because it seems like things are getting worse and I don’t know what to make of that.

I do not want to discuss a second surgery, but I am considering getting a referral to see a neurosurgeon there, the one who did the grand rounds presentation I sat in on last month. I am starting to think it wouldn’t be a terrible idea to have a chiari expert take a look at my MRIs and give me his opinion. I don’t promise to take it, especially if his opinion is a second surgery, but I’ll consider it at least.

I can be reasonable. When I want to.

I want some answers and I really want relief. I know I probably won’t get both, but I’m going to set my expectations high. Hopefully our last appointment will be the start of some sort of reasonable, positive change.

Because this, this life right now, this pain level, this frustration, is no way to live.

Sometimes I come to write and hesitate. I officially market myself as a “health” blogger, ironic though that may sound. The reason I started blogging was to share my story with others and along the way I’ve found that I love writing about more than just my body, my brain and my health. But there are days where I just want to talk those things out and I don’t know whether I should. I know that these are often not the most interesting posts to read and so I sometimes silence myself. You are welcome to not read, but I want to write it out tonight, boring or not.

Once again, the headaches are coming fast and furious and on top of that, I feel like my baseline headache pain is higher than it used to be. I’m off one of my headache meds now and I find that each morning is more of a struggle, each evening closes with more pain. I would restart the medication, but honestly, I don’t think it’s to blame. Before I stopped taking it, I was still having many HUGE headaches and wasn’t sleeping, so I hesitate to give it any credit for anything positive.

The other things I’ve noticed lately is a generalized decreased ability to concentrate. I miss important things, misread things constantly, I write down the wrong times on paperwork almost every day, I get words switched around in emails, I mis-spell simple words, sometimes repeatedly. And I don’t always catch these mistakes, which is odd for me and is very often embarrassing as all hell.

And then there’s the dizzy/vision stuff. Monday night I have multiple episodes of this pseudo-dizziness. It’s not pure dizziness. The world doesn’t feel like it’s spinning, I don’t feel like I’m spinning, but that’s the closest thing I can compare it to. I guess it’s more vision being lost. I can’t focus my eyes and things get hazy and blurry. And then my heart starts to race and then it’s over. Monday it happened several times within an hour. I was definitely a little dehydrated, which is historically when this has happened and I know better than to let myself get to this point.

But I’m frustrated. I crave simplicity. I wish that I could have a day where I get side-tracked and don’t drink enough water without major consequences. I wish I could go through a stressful time without knowing that pain is in the very near future. I wish I didn’t wake up first thing in the morning to do a quick scan- how much does my head hurt? Am I dizzy? How’s my stomach?

I feel like things never get easier. Every time I get into a routine and start feeling confident and comfortable, another shoe drops somewhere. Sometimes it’s a quiet one, it’s just a string of obnoxious headaches. Other times it’s a big freaking boot, it makes a crashing noise that makes me cower. It brings pain that doesn’t have words, it brings paralyzing dizziness and vision loss.

I’m tired. I want a break desperately. I know I’ll survive, I know I’ll get into a new routine and accommodate to whatever comes next, I just don’t want to.

I just want to be normal.

Early last week Slappy got an email from his work listing all the neurology Grand Rounds presentations for the next several months. He wasn’t going to go to the first one because he hasn’t actually started his neuro residency yet, and also because he was on vacation, but then he saw that the first one on the list was about Chiari Malformation, which, in case you’re new here, is what’s wrong with my brain.

So a few days later we got up very early, dressed like grown ups and drove to my husband’s work to listen to a presentation. We just love learning way too much.

The neurosurgeon who was giving the presentation works at UCLA and is a known expert in the field. He’s also a guy that I tried to get an appointment with many years ago with no success and the same neurosurgeon my neurologist wanted to refer me to just a few months ago to discuss a second brain surgery.

He began his presentation giving some basic information about Chiari, the incidence, the associated conditions and the causes. I sat there kind of awestruck. Not because this doctor was famous or good looking or anything, but because for the first time in the 5 years that I’ve carried this diagnosis around with me, a doctor was actually explaining Chiari to me.

The talk continued on to discuss surgical techniques as well as complications and recurrence of symptoms after surgery. What we learned was that my neurosurgeon probably didn’t do enough surgery. Which is kind of mind boggling considering all the crap they did in my head.

The evidence suggests that better outcomes occur when neurosurgeons shrink down parts of the brain that are herniated into the spinal canal (which mine didn’t) and use a mix of synthetic and natural tissues for the patch on the lining of the brain (which, again, mine didn’t). All I could think about was how my neurologist recommended I have a second surgery and I knew that if I schedule an appointment with the neurosurgeon, he’d probably do it. Which honestly, is kind of terrifying. I don’t want more brain surgery, even if all the evidence suggests that I need it.

But the part that of the presentation that I found to be the most interesting was the discussion about complications after surgery and recurrence of symptoms, because I had both. He described a patient who had a decompression surgery, had relief of symptoms and then had a sudden recurrence after just a few weeks. He showed a copy of her MRI and it literally almost took my breath away. It looked just like an MRI I had done a few weeks after my surgery. She had a patch of fluid in her neck just outside of where all the fluid was supposed to be contained. The only difference was that my neurosurgeon took a watch and wait approach and her surgeon opted to open her back up. And what he found was a big hole in the patch they placed on the lining of her brain.

A hole that would explain decreased intracranial pressure. A hole that could seal itself and scar down heavily, which might cause increased symptoms. A hole that could be responsible for just about all the crappy things that are still going on in my brain today.

But I didn’t walk out of the talk and call my neurologist, or call that neurosurgeon’s office to try to get an appointment. I didn’t walk out and delve into further research and statistics. I walked out feeling confused.

I had just learned so much, I had heard that there should be benefits in a second surgery, I had learned that there might be an explanation for everything I’ve been through. I had heard from a surgery who was in my network of healthcare providers who would potentially take me as a patient if I wanted. I saw that I could try a second surgery. But I also saw pictures that threw me back in time. I remembered, in stunning detail, the recovery from the first surgery. I remembered waking up to a shaved head, to holes around the crown of my head from being screwed into a stabilizer. I remembered the discomfort, the frustration and the ultimate return of all my earlier symptoms, plus some extras.

I don’t know how to summarize that morning. I learned more about my brain than I’ve learned in the 5 years since I was diagnosed. I learned more about a surgery I already had than in the hours and hours of research I did before agreeing to have it in the first place. I felt really informed about my own disease for the first time ever.

And somehow despite all that, I walked away from the presentation even less sure of what the future holds for me.

When people ask me how I manage to go to school and lead a relatively normal life with chronic pain, I usually tell them that I’ve gotten used to it, I know how to cope, etc etc. But the truth is, I am able to go to school because I generally have a lot of good days.

Yes, I always have a measure of pain in my head. It’s my state of being. I wouldn’t know what to do if I didn’t.

But then there are days like today, where it’s not just a little bit of pain. It’s not baseline, it’s overwhelming. It’s unbelievable life consuming pain.

I can’t slap on a smile and manage in spite of this pain. I can barely get out of bed and I don’t even try it until after I try a handful of pills that I already know aren’t likely to do anything to help. And even then, the getting out of bed is done very gingerly, because there’s no way to know what might make the pain worse, if it even can get worse, which I’m not sure it can.

It took 2 hours of laying down after I woke up this morning before I thought I could even stand up. And then all I did was get myself a cup of coffee and immediately lay back down because that trip into the kitchen was exhausting. Most days I have energy in spite of my baseline pain, but on days like today, there is no energy reserve to pull from. It’s like it’s taking every ounce of energy I have just to remember to breathe, to not tense up every muscle in response to pain.

I feel like I live a bit of a lie here. Because though I do have chronic pain, I am incredibly functional. I can do the majority of the things I want to do. I can attend my classes and finish my homework and do projects and study. Sometimes I can even exercise after a full day. I can do all of that with pain, and though I don’t always do an amazing job, I have yet to not finish anything I’ve started.

But on the other hand, the days where I have severe pain, truly intense, oh dear God the world is ending pain, I can’t do any of that. I can’t go to class, I definitely wouldn’t be able to go to a day in the clinic and though I did a homework assignment from bed today, there are so many typos in it, that I’m going to have to re-do it before tomorrow.

I’ve been accused of faking my pain many times, both here and in my real life and maybe those people are right. I do have pain every single day. I have a headache every single moment of every single day, and I’ve resigned myself to that reality, but it’s manageable pain. It wasn’t so manageable at first, but I’ve come to a place where I know how to live with it.

And I can understand people thinking that I’m exaggerating my pain because the life I show to the world is not the life I live when the pain is excruciating. Those are the days that I don’t share, the days that I stay in my bed and hide from the world, because I know that I won’t be able to meet my own standards, the days I can’t do the things I pride myself in still being able to do. Hell, the days I can’t even attempt to do most of my normal activities because the pain would be so unbelievably intense.

And in a way, I think I’ve done a disservice to patient bloggers by not sharing these days. Because this is part of the reality of chronic pain, this is part of my life. It’s hard to write about, it’s hard to describe and it isn’t particularly flattering.

I want to be a strong person, I want you to see me as able in spite of my pain, but that isn’t the truth. I’m not always able, and some days, I’m just doing the best I can to make it to tomorrow.

In January I bought a Groupon for a yoga place near my school. I started going on Thursday nights when I got out of class at 5 and didn’t want to sit in my car in traffic for hours on end. From the first class it was an amazing and challenging workout, and by the second session, I was hooked. Also, very sore.

After just a few weeks of classes, the great pneumonia plague that was February settled in and I missed several weeks of yoga. I started slowly back in March and was happy with how it came back to me. I’m lucky in that I am naturally very flexible, so yoga isn’t particularly painful for me like it is for some of my friends, but it is still strenuous. I seriously sweat buckets without even leaving the confines of my mat.

In the past few weeks, I started adding a second class on Mondays or Tuesdays and at first, I was impressed. I could tell that my body was getting stronger, my arms and back were able to work longer without trembling, I was able to hold the poses easier and try new things.

But then April started. Freaking April.

I had my first big headache (where big means greater than or equal to a 7 out of 10 on a pain scale) on April 1st. It is now April 14th and I’ve already had 12 big headaches this month. 12 big headaches is usually more than I usually have in a month, and almost twice what I usually have in 2 weeks. I am floundering.

And in case you wondered, yoga is not a headache solution.

The pain is starting to wear on me. All things considered, I’ve been managing better lately. But tonight, as I sat in yoga, feeling overwhelmed and in pain, I found myself really struggling to keep up. I was lightheaded and shaky, I wasn’t able to use my muscles as well as I had been. When it came time to lay flat at the end and relax, I couldn’t. I couldn’t let my body calm down because the pain had me on edge and the stress of a test I have to take tomorrow, on top of the stress of the pain was too much.

As everyone around me calmed and relaxed, my mind ran a million miles an hour. My heart raced in my chest and pain surged in my head. I left feeling worried, frustrated and mostly just tired. Not the tired that you earn after a workout, the tired you feel after running a marathon, after crawling the last few miles and wanting nothing more than to sleep for weeks on end.

I am waving my white flag. I have done the very best I can to keep exercising, to keep up in school, to participate in life in spite of this pain, and I have mostly succeeded. But it has come at the cost of my mind, of my sanity and I simply cannot keep pretending like I can manage this. I can’t. I can’t handle 12 big headaches in 14 days. I can’t handle the new stabbing pains that I’ve been getting and the dizzy spells that are more frequent this month than they have been in the past several.

I cannot do this. I can’t keep going, I need a break and there’s none in sight. I need anything that’s going to break this hellish cycle and let me go back to the things I want to do, but I look around and there’s nothing, there’s no option, no treatment we can try.

There’s just pain, there’s fatigue and there’s life. And try as I might, I can’t seem to trade the first two for the last one. They’re a package deal it seems.

I don’t know what has changed this month, but I’d give just about anything to fix it.

I’m struggling a little tonight.

Part of it is my fault, I went to bed way too late last night, so I am exhausted today. But part of the reason I went to bed too late last night is because of a huge increase in my headache level last night that came out of no where and made it really difficult to get all my stuff done before bed.

I was relieved when I woke up with more normal, baseline headache pain but that only lasted until around 2 this afternoon when it came screaming back. I’m so frustrated and I hurt so much.

It’s really hard for me to do the things I need to do when my head hurts this much. I can’t focus, I become more inarticulate than usual, I am groggy and I seem disengaged. And it’s not for a lack of trying. I want nothing more than to soldier on and do the things I need to do, but the pain is outrageous, it’s all consuming and it prevents me from being me.

I drove home today in misery, wanting nothing more than to be home in bed.

But more than that, I drove home wanting this to stop happening. I want answers, I want solutions, and I know that this is a little choosy beggar of me, but I want those solutions to not include another brain surgery (though if I was promised long term relief with it, I’d do it in a heartbeat). I want to have the normal, easy life that I used to take for granted. I want to not need a medical alert bracelet, I want to not have a medical history file that is thicker than most great novels. I want a life that does not include days like today.

Because the thing is, good things happened today, but I can’t even remember them. I can’t think back that far because the only thing I can focus any attention on is how much pain I’m in. How much it hurts and if there’s anything I haven’t tried to make this go away.

I’m miserable. And when bad days pile up, my stockpile of coping skills dwindles. I am not coping, I’m just doing everything I can to survive and hoping it’s enough. I’ve been given a clinical rotation that people would kill for and I feel like I’m wasting it. Like I’m unable to soak up all that it has to offer for me, as a student, like I’m unable to appreciate the opportunity because I’m busy treading water desperately just so I don’t drown.

I know this will all be easier in a few days when I’ve had more sleep and hopefully when my head has settled back down, but the unwritten fear is that this time my head won’t settle down. That someday the pain I have tonight might be my every day pain. It terrifies me. It keeps me awake at night because I cannot function when I feel like this. I cannot fulfill my roles as a wife, a friend, a student or anything else when I have pain like I have tonight.

I’m scared and I’m tired. And I just want a break. I feel like it should really be my turn soon. I’ve waited as patiently as possible for 18 months, hoping that eventually things would get easier, less painful. And they haven’t. I just need a break, a few days to enjoy a life that I used to know, a carefree existence that I wish I had appreciated more when I had it.