Archive for the ‘The Health’ Category

I got a phone call last week from my gynecologist. When I was there the week before she had decided to do run a quick check of my vitamin D levels, even though I had been religiously taking vitamins for a few weeks. She said that she expected it to come back in the normal ranges and that it was nothing to worry about. So I didn’t worry, until I got that call.

Apparently my vitamin D levels were reeeeeeeeally low.

So the doctor called in a prescription for a big dose that I’ll be taking for the next 2 months, at which point we’ll test again. She wants me to continue taking my normal daily vitamin and the Calcium supplement that comes with a regular daily dose of vitamin D in the meantime.

And with the addition of the vitamin D, I am now taking 15 pills a day.

FIFTEEN PILLS A DAY.

The great irony of this whole situation is that I walked into that doctor’s office two weeks ago with the intention of decreasing the number of pills I was taking at the time. And yes, I am tapering down one of my headache meds (because it both has insufferable side effects and also because it’s not helping a damn thing), but somehow I walked away from that appointment with 9 extra pills a day. My mind boggles at this.

My pharmacist and I will be on a first name basis pretty soon, mostly because she never ever has the autorefills done on time, so getting refills usually involves 2 trips to the store per prescription. And then a lot of standing around and waiting for when they forget the second time that they’re supposed to be refilling my stuff.

I won’t lie, there was a small part of me that was hoping that Vitamin D was going to be the key. You know I’m always secretly looking for the key, for the thing that’s going to make me feel better, that’s going to give me a carefree life back. I know it’s a pretty fruitless search and I try to tell myself to stop doing that, but well, I’m not a quick learner. But hey, on the upside, I’ve found about 10,000 things that are officially not the key.

And I think I can add vitamin D to that list. Obviously it’s early in the treatment and I have several months of this left, but I’ve been on this pill regimen for a week now and besides the time it takes to sort the pills out and remembering to take them (because of course they can’t be taken all at the same time, don’t be silly), nothing is different. I feel exactly the same as I have for a while now, and I’m just trying to be okay with that.

I have to say, I really appreciate that this all happened just as I had a birthday. I’m pretty sure that I’m going to be buying myself a pill sorter as a belated 28th birthday present. Which is good, because 60 years from now when the rest of my peers get them, I’ll be a pro.

There’s the silver lining to go with all the silver hairs I’m sure are sprouting all over my head as I type.

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.

I often find myself in a frustrating position as a person with chronic pain and the wife of a doctor.

I belong to groups and am friends with many other people with chronic pain and I love these people and these groups for the support that they provide. I love that people can go and vent and get advice and all those wonderful things. But I’ve found that often there is a common undercurrent in a lot of conversations: mistrust of doctors. And I get it. I really do. I have had several really crappy doctors. I have gone against medical advice when I think that the advice is bad.

But I still trust doctors.

I watched my husband go through medical school. I watched him stay up late studying, take crap from doctors and from his classmates. I watched him cross the stage and enter residency. I can tell you that the path to becoming a doctor is harrowing. It is harder than almost anything I can even imagine. These people do not go into medical school lightly and they do not get in unless they are very bright.

So when I hear people talk about doctors and say that they don’t care about patients, just about money, I cannot help but cringe. I am sure that there are some doctors who are that way, but I know A LOT of doctors and I have yet to meet any who care more about money than their patients. In fact, the vast majority of doctors are not extremely wealthy. They are not going home to multi-million dollar homes and sports cars. Yes, some are, but not most. Most doctors have huge student loans for the first 10-15 years of practice. Most doctors are doing the best they can to survive in this economy just like you and me.

And like you and me, they are human. They make mistakes, sometimes big ones. I’m not excusing the mistakes of any physicians, but I know I’ve made mistakes at my job, even when I was doing everything right. Also, keep in mind that many of them are horribly overworked. They are only supposed to work 80 hours per week, but as the wife of a doctor, I can tell you that it often isn’t the case. My husband spends hours at home researching for patients, researching for presentations and more. I know he can’t possibly be the only doctor doing this.

I know that some of you have been offended by psychology referrals from doctors and I get that. A psych referral feels like a slap in the face, like an accusation of being a faker. But psych referrals aren’t meant to say that you’re not in pain, that you’re not sick, the fact is that there is a psychological component to pain, to sickness. Science has proven that the areas of the brain that control emotion work differently when people are sick or in pain and trying to help treat that is not a cop out. And honestly, it might be worth trying instead of being angry.

Finally, doctors have egos. It’s not their best trait, but it’s just a reality. And sometimes they get frustrated when patients come in with a stack of papers that they found on the internet and tell them how to do their job. It’s not that they mind you being educated, that’s not the issue. But understand that they went to school for 4 extra years after college, they completed grueling residencies and so when you walk in and tell them that you want x, y and z and you want them right now? They get frustrated.

Medicine is not as simple as it is sometimes made to seem on the internet. There are important processes that need to be followed, there are tests that are better and worse for diagnostics and better and worse for people. You absolutely should educate yourself (but for the love of God, stay off of WebMD, it is the WORST), but also have a dialogue with your doctor, don’t demand things of them and expect them to be happy.

There is no doubt in my mind that there are some truly terrible doctors. Just like there are terrible lawyers, terrible parents and terrible auto mechanics. The point of this is not to try to convince you that doctors are perfect, because that is totally unture. The point is that they’re not all bad and if you really believe yours is, find a different one. And if every doctor you’ve ever seen is just the worst, then perhaps the problem isn’t the doctors.

Be understanding, remember that they are people, they will make mistakes just like you and I. Remember that they are also people’s husbands, wives, children and siblings and sometimes it’s really hurtful to hear that all doctors are greedy terrible people.

Because they’re not. I promise.

So, I seriously considered not writing this post and I will give you the warning that it is going to contain a bit of TMI, but I decided that I wanted to share. So consider yourself warned now. I mean, it’s not like I’m including nasty pictures or anything, and I’ll keep it as non-overshare-y as I can, but there’s only so much I can do.

I had an appointment with a gynecologist today and the appointment was for two reasons, well, three kind of. First, I needed to go for a yearly check up, second, the IUD I’ve had for the last five years expired and needed to be removed and third, well, we needed to have a discussion.

The exam was fine, as fun as always, but I really liked this doctor. She was recommended by a friend and had a nice warm personality without being too touchy feely. I mean that in the metaphorical way because gynecologists have to be feely, it’s their totally gross job.

And then she removed the IUD. For the record, anyone who tells you that having one of these removed isn’t painful is a lying liar (I’m looking at you Ali). Also for the record, I had an IUD instead of more traditional birth control because my neurologists were not comfortable with me using the pill because it can sometimes cause blood pressure changes, which could mess with intracranial pressure and cause a bunch of issues. So I had the IUD inserted 5 years ago and I loved it. It’s not for everyone, but dudes, it was for me.

I did not love having it removed. OUCH. You know when a doctor says, “okay, take a deep breath” that what she’s about to do is going to suck. And good heavens it did.

And then we had a chat. You see, I’m not having another IUD inserted because we’re rapidly approaching the time when we’re going to want to have kids. It’s not going to happen immediately, but it’s in our pretty near future and I wanted to talk about my medications and my medical history to get her opinion and to make sure that there were no medical reasons why we couldn’t start trying to get pregnant in a couple of months.

She checked me over from head to toe and declared me complicated, but healthy and totally fine to have babies. She is, however, recommending that I take a very high dose of folic acid because chiari malformation is typically considered to be a neural tube defect she wants to be safe. My chiari diagnosis means my children will be at a higher risk of having the same issues, so the hope is that folic acid at 10 times the normal prenatal dose will decrease the neural tube defect risk a little. Since it’s a pretty minor med and has the potential to be a huge help, I am whole-heartedly on board with the plan.

Aside from general pregnancy recommendations that are given to everyone and the determination that she’d like me off both headache medications before we start trying to get pregnant, I was given the all clear. And it helped that she was totally excited about our plans for me because I am alternately out of control excited and terrified. I know that just because she gave her blessing doesn’t mean that this will happen in the way we want it to because SO much of it is out of our control (and because God has a fun habit of laughing in the face of my plans), but we’ve been given the green flag both by the obgyn and by my neurologist, so we are very, very hopeful.

Before any of you burst my bubble with questions about money, time, health and all the other things that trust me, we’ve already considered heavily (but don’t feel a need to discuss publicly), can we all just be a little excited for a while? Because holy crap you guys. I have never wanted to be anything as much as I’ve wanted to be a mother and I’ve finally reached the point where it’s close to (potentially) becoming a reality.

I would jump for joy if my uterus didn’t still hurt so bad from that stupid IUD removal.

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.

When I saw the neurologist last month and described the dizzy spells I’d been having (and how my heart always races afterwards), he seemed concerned that the problem was my heart, not my brain. I have remained somewhat skeptical, but I figured that it would be easy to cross that off the list and target other causes later, so I called the cardiology department to set up my monitor.

My neurologist wasn’t sure how long I’d be wearing the monitor, but I figured a week at most.

After driving from a school event 10 miles away from the cardiology office (which took 70 minutes…), I was taken back to a small curtain enclosed room. A man showed me the box, electrodes, manuals and batteries and then walked me through how the event monitor worked. Then, in a very non-ceremonius way, he asked me to lift my shirt up and stuck two electrodes on me and I was like, sweet, I can do two electrodes for a week.

And then he started doing some calendar math.

He told me that I’d be wearing this every day, all the time except when showering, until April 2nd. Yea, so 30 days.

The monitor is set to record if it senses a change in the rhythm of my heart or if I press the record button after having some cardiac symptoms. The monitor can only hold 3 events at a time and to send them in and clear the monitor so it can record more events, you have to call the company from a landline (seriously technology?) and press and hold a button for it to transmit. I can only describe the transmitting sound as a cross between a cat dying, a tea kettle whistling and an old school modem. It’s pretty shrill.

The guy took a baseline recording of my heart, sent it in to the heart monitor people and sent me on my merry way. I didn’t love the monitor, but since I have never had any issues with my heart, I figured this would be a pretty quiet 30 days.

Thirty minutes after I left the cardiology office, while seated quietly in the car (okay fine, maybe I was singing to Glee), the monitor beeped to tell me it was recording. I was surprised because I didn’t feel anything, I wasn’t even moving. Kind of creepy, but I figured maybe it was just overly sensitive. Thirty minutes later, it beeped again because it was recording another event.

Apparently my heart? Is all about these events. Since I got the monitor on Friday, I’ve had 20 “events.” When I transmit them, I talk to a person and twice he’s told me that what they see is a problem with the electrodes shifting and that has been really, really good to hear. One other time, I told him I was walking, so it was probably electrode stuff and he put me on hold to look at the EKG, came back on the line and went, “well, I guess there might have been some electrode movement at the end of that event.”

GAH.

I’m pretty sure that the stress of this monitor, or the INCESSANT BEEPING are going to kill me long before any arrhythmia, but I could’ve lived without knowing that my heart is not acting normally several times each day. I’m hoping that it’s nothing that will need medical attention, but I would be lying if I said it wasn’t scaring me. I defy you to know that your heart is doing something weird 4-5 times a day and not be creeped out.

Given how much my classmates love it when I cough, I can only imagine how excited they’re going to be when I have an event during class. Ten bucks says it’ll be during our exam on Thursday. Takers?

On Friday I saw my physical therapist at a last minute appointment because my neck flared up suddenly in a very short period of time. She asked me what had been going on that may have started the flare and I told her about exams and a few life stressors and she looked me in the eye and gave me some ugly news. She said that if I didn’t get my stress under control that my neck would continue to be a problem.

I go back and see her again tomorrow and let’s just say she is not going to be pleased.

The stress kind of snuck up on me. It’s not that I didn’t have stressors, it’s that for a while I’ve been doing a really good job of compartmentalizing. In one compartment I had the stress of being sick for over a month. In another compartment I had the stress of being told I’ll need another brain surgery. In another compartment were my midterms and in another, an upcoming project and an upcoming clinical rotation. I tried to focus on one thing at a time, but before I knew it, the background stress grew to a deafening level and I could hardly focus on any one thing because there were so many others begging for my attention.

For the past week and a half I’ve had a twitch in the muscle just below my right eye. This morning for no apparent reason (except stress), I broke out in hives all over my back. I’ve had an absolutely unrelentingly bad increase in my normal headache for the past 3 days and sleeping has been difficult to come by.

I am slowly, but surely, unraveling. And the most frustrating part is that it’s my own fault.

Yes, there are a lot of things going on and most of them are outside my realm of control. I’ve actually done a pretty decent job staying up to date on most of my classes and studying in advance instead of at the last minute, but I’ve put such a tremendous amount of pressure on myself this semester, that I don’t see how I can possibly succeed.

I made a decision two years ago to go to this program even though my sister was not just a graduate, but a stand out graduate who later came back to teach one of the courses. I knew that there would be added pressure from that, but I felt comforted because I had changed my last name prior to starting and because we really don’t look anything alike. And then the name change didn’t really work and word travelled through the program, and everyone knows I’m her sister and that’s not a bad thing, but it’s harder than it would otherwise be.

My sister is a neuro-focused person. She treats neurologically compromised patients, she’s writing a textbook on neuro treatment techniques. She is important in her field and she is really good at what she does. I’d love to spend a day just watching her treat patients because she is astoundingly good at it. That said, I do not care for neuro. I just don’t, I don’t mind some parts of it, but as someone who has experienced neurological deficits, I don’t think it’s a field I would be happy working in.

This semester is all neuro. Every class is neuro based, neuro focused and our big project involves a neuro patient. It’s a tough semester for everyone, I’m not the only one who is stressed. But somehow, I found a way to make it tougher. Because I feel like I can’t just be okay, I have to be amazing. I fee like if I don’t get As, my teachers (all of who know that I’m my sister’s sister) will think less of me, less of her. My sister’s reputation proceeds me and even though no one has asked me to, I feel like I need to live up to the standards she set. I feel like not doing as well as her makes me a failure.

I’ve created stress where it doesn’t need to be and I feel like I’m drowning in it. I’m forgetting who I am and how important it is for me to be me, for me to just give my best effort and celebrate my victories, however small. I let the expectations, my expectations, grow out of control. I set the bar too high and now I’m somehow surprised that I can’t clear it.

I don’t want to go to physical therapy tomorrow because I don’t want to have to face what I already know. I am making myself sicker, I’m making myself hurt more. I don’t want to face the fact that I am, in many ways, my biggest problem.

Because that’s one I don’t know how to fix.

I had a totally different post planned for tonight, but I got an email earlier this evening and I need to rant, because I am indescribably pissed.

I know you’re all aware that I’m sick. I’ve been coughing for over 4 weeks. It’s been a unique circle of hell for me and I know it has been obtrusive to the learning of others, and I have felt terrible about it. I’ve stayed home several days both for my own health and also so I don’t interrupt my classmates’ learning and it hasn’t made any difference except that I’m now extremely behind in all my classes. I have maintained really good hygiene through the entire experience and seriously, I haven’t gotten ANYONE sick.

And yet, when I got home today there was an email in my school inbox. To make a long story short it, my classmates would like me to stay home until I’m healthy. They believe I am getting them sick and if I won’t stay home, then antibacterial hand gel and cough drops should be my friends.

And I am really fucking angry.

For starters, I’m an adult, I’m in the health care field and if I thought I was contagious, I’d be at home. Because I’m not an idiot and because I actually care about other people besides myself. I have no desire to get anyone else sick and I have been extremely careful to avoid exactly that. At this point, even if this is pertussis, I’m not contagious because I’ve already been through the antibiotics that reduce transmission and the infectious period has already passed. Nevermind that if it is pertussis, the coughing will persist for many more weeks and it’s unreasonable to expect me to stay home that entire time.

But beyond that, how did it become anyone else’s job to tell me how to take care of myself or keep others healthy? If there was something beyond two rounds of antibiotics, steroids and a prescription cough suppressant that I could take to deal with this, I would, hell, I’d buy fucking stock in a miracle cure. I would do anything to stop coughing. And if they could stop being so concerned with themselves for a moment, perhaps they’d realize that I’m doing the very best I can.

Also, I really just wish someone had told me about the wonder of cough drops sooner, because I HAD NO IDEA. I’m sure it would’ve eliminated the 4 week long cough almost immediately. Someone should tell doctors about these, I’m sure it would save them all kinds of time. Hell, I think we can solve the healthcare crisis, let’s just give everyone cough drops and BOOM, they’ll be healthy again.

The part that makes me the most angry is the assumption that I wouldn’t care about anyone else’s health or wellbeing. I excuse myself to cough in the hallway all the time so that I don’t disrupt class and I am pretty quiet about it. I have been using antibacterial hand gel non-stop, I haven’t participated in labs where I’d have to contact anyone besides friends who know exactly what’s going on with me. I’m taking care of myself and I’m not putting them at jeopardy and yet they feel it’s appropriate to tell me whether or not I should be at school.

I’ve recently been disappointed with the conduct of some of my classmates, but this is really beyond what I expected of them, and those expectations were already pretty low.

I really wanted to reply to the email with a simple, mind your own fucking business, but instead I replied, politely but curtly, to let them know that I was not contagious and that I was doing everything I could to not disrupt class. And that furthermore, I was taking care of myself in the way that my physician recommended and that they could shove their cough drops up their asses.

I’ve worked really hard to keep everyone around me healthy, and I am sorry if I’ve disrupted class, but there are times where their input is appropriate and there are times where it isn’t. I’m doing the best that I can and if one of my classmates was sick, my only concern would be for them. I cannot imagine ever telling someone how to take care of themselves or not giving them any credit for trying to keep the rest of us healthy.

But if they want something to worry about, they can have it. I mean, someone who can’t even think to use cough drops seems exactly like the kind of person who would be prone to forgetting how to cover their mouth while coughing. Just sayin’.

1. Your instructors offer you narcotics. Like, tell you that they think they have some codeine at home that they would be happy to give you for your cough. And not that you’d ever take them up on it, but having them offered is still kind of epic.

2. It’s like a constant work out. My abs have seriously never looked better. It’s like I’ve done crunches constantly for 4 weeks, only I haven’t set foot in a gym or even considered exercise in that entire span of time. Can you even imagine what they’d look like if I ever did sit ups before this started?

3. You have a fantastic excuse to eat cupcakes. Or you would if cupcakes weren’t totally anti-pneumonia.

4. Wearing pants that aren’t yoga pants is totally overrated. No one can judge you for looking crappy when you clearly feel worse than you look.

5. Teachers actually want you to stay home and watch tv in bed. Something about being obstructive to the learning process with constant loud coughing. Whatever.

6. You’re under no obligation to go to events you don’t want to go to. It’s really hard to argue with pneumonia. Mostly because you can interrupt the argument with constant coughing. It’s like making really good points, really loudly, over and over again. With germs.

7. The people at the pharmacy know you by name. Which would totally speed up the process of picking up prescriptions if they ever actually had them in stock.

8. The combination of headache meds that cause rage and steroids to help with the pneumonia give you an amazing excuse to be a bitch all the time. Don’t ask anything you don’t want an honest answer to right now.

9. You can eat whatever you want for dinner. Pneumonia’s kind of like a baby, I think. You have to feed it what it wants. And it totally only wants Stovetop Stuffing and m&ms.

10. When you do really crappy on two exams back-to-back, no one can judge you. Or at least they can’t judge you to your face. Because then you might cough on them.

I arrived at the neurologist this afternoon, after fighting with traffic, with not a moment to spare. And much to my dismay, especially after hearing a woman YELL about how long she’d been waiting, I was taken back within 15 minutes of my appointment time. Considering the hour and a half wait last time, 15 minutes was pretty awesome. My doctor (who is a resident) came in and apologized for being disheveled (which he was), caught up on my chart and started asking questions and doing tests.

He wasn’t pleased with the number of big headaches I’m still having, which is good, because I’m not pleased with it either. He was interested to know that the fast acting med only helped with a real migraine because that lends more support to our belief that these headaches are not migraines.

And then he took a look at my MRI.

I don’t have an evidence of damage from low pressure that we were looking for, but what I do have was something I didn’t expect. It turns out that my cerebellum and brainstem are back to being crowded together in the back of my skull. It seems as though despite having multiple bones in my head removed, there’s still not enough room for my brain. I didn’t get an exact measurement of how far down my brain is hanging now, but it’s clear that things are more squished than they used to be and definitely more than it should be.

So, yea. That.

There’s no really good theory for why. It might be a consequence of low pressure because extremely low pressure can cause brain herniation. And since we know I’ve had chronically low pressure, it’s possible that instead of the enhancements they expected to see, this is the real outcome of the pressure issue.

My neurologist said that he could send me to a neurosurgeon today and they would probably encourage me to have surgery to re-decompress my brain, but he’s not sure if it would help at this point. On the other hand, it seems that eventually I will need to have another surgery unless things stay extremely stable from now on, which seems unlikely.

So there it is. I’m probably going to need another brain surgery.

Fuck.

The only major upside to this that I can see, at least tonight, is that my neurologist is convinced that the chiari HAS to be a part of the 18 month long headache. That has previously been up in the air because surgery should’ve resolved the symptoms related to it. But now that things are going back to a state of squashedness, we can soundly say that we know at least part of the cause for all this pain.

It doesn’t, however, give us any freaking clue of how to treat it. My neurologist and his attending were both incredibly apologetic because they really just don’t know what to do. For now, we’re adding a new medication to the regimen that I’m already on and we’re keeping an eye on the tremor.

We discussed the dizziness/disorientation spells and the best guess they could come up with is that it may have a cardiovascular component. Because my heart races for several minutes after each of the episodes of disorientation, they think it might be an issue with blood flow to my brain that’s causing a part of my brain to kind of short out temporarily. So they’ve ordered a holter monitor and they’re going to watch my heart for a while to make sure everything is good there.

Sigh.

It’s funny, because I went into this appointment today thinking that the most news I’d get was that they still have no idea what’s going on. And boy was I wrong. I learned that we do have an idea of the cause, even if we are still without a solution. I got news that is going to take a while to digest, process and not want to scream about, I got a new medication and I got a referral to have my heart looked at.

This is probably the first time a neurologist appointment has exceeded my expectations. I just wish it could’ve been in a couple less scary ways.