Waiting and waiting and waiting and waiting...

So the insurance denied the surgery for a reason I don't yet know; I haven't received a damn letter from them, and when I spoke to my case manager, her system showed only the Botox denial letter. I don't know what the reason is, so I can't really go forward from there.

But then, like always in my life, we're still stuck, but for an entirely new reason. Inga, Dr. Ducic's secretary / scheduler, phoned on Monday to say that everything was in order on their end, and that she'd put a call into the surgery center to make an appointment for me as early as possible. She said that we should have a date ASAP and that we'd know either that afternoon or first thing tomorrow. Tuesday came and went. Wednesday came and went. Thursday came and went. Nothing. So we phoned back in on Friday afternoon to ask what the hold-up is. Inga told us that, essentially, the surgery center was being a douche face and hadn't phoned her back, even after she'd phoned them a few new times. It doesn't make me feel better that the surgery center hadn't phoned back to schedule various procedures for the other 100-odd patients of Dr. Ducic waiting for a date. The surgery didn't even have the guts to return a single phone call for any procedure and any patient. Inga was so apologetic, and I felt terrible for phoning in ALL THE TIME to pester her where my case was. She simply couldn't do anything, and it's not her fault, and I could hear that she was as frustrated as the doctor's patients - we're all losing our patience (haha). There is simply nothing she or I could do about it, but I suspect she's going to raise some serious hell.

All I wanted was a small piece of good news for the holiday, and to start off the year with positive thinking. On Friday and Saturday, I was manically angry, the kind that my medications couldn't control because it came out of sync with my cycle. Now I've simply become despondent. This constant bad news and putting things aside is excruciating.

This is yet another christmas where I'm sick. It's always something - chicken pox, migraines, depressive cycles. It's the third christmas in a row that I've been too ill to enjoy the holiday. I mean, I really don't enjoy it anymore, anyway; it only makes me terribly sad to think about how excited and thrilled it made me as a child / early teenager, and how that feeling is completely gone from my entire life. I don't get that same kind of excited-ness, and I wish I did.

Not been writing much

But that's really because I don't have much to say. I still haven't received the denial letter from the insurance company, so we can't really be sure why exactly they've denied coverage for the surgery. I strongly suspect it's because a) they can't prove medical necessity or b) they think the surgery is still 'experimental' and current medical research doesn't back up the surgery. I essentially said 'fuck that' to option b) and set out on an epic quest to find all of the medical research I possibly could on nerve decompression surgeries and occipital neuralgia. From chatting with people through an ON forum, I've seen that the most common reason for denial b) states that there isn't enough clinical research and clinical trials with long-term follow-ups to suggest that the surgery is a viable, long-term option for treating my condition. Like hell there isn't. I currently have a three-page letter explaining my condition, the doctor, the procedure, and medical research, backed up with about 40 purely medical articles - including two-, five-, and ten-year followups on clinical trials. To piss of the insurance company even more, I've printed out all the abstracts (and some full-text articles where I can) for them to read over. I plan on sending all this overnight to the company and require them to sign for it, so I know they got my giant research of doom. If nothing else, I've gathered the research other patients may need to fight their companies. From the information provided by the surgeon, over 90% of his patients' insurance policies do pay for the surgery, which also lends credence to the fact that this isn't considered experimental any more. I know for a fact that my company has covered this procedure with this surgeon before. Needless to say, I'm fuckin' ready for a fight. Well, not really; I don't have the energy to fight, but I did the research and have lots of awesome people on my side.

The only real decision we need to make now involves the review process. We can submit our claim to an internal approval group (which is actually made up of doctors and not generic, bureaucrat, paper-pusher behind a desk), or go directly without passing GO to an external review board of doctors. We can re-re-appeal to the external board if we need to after seeking internal approval, but we aren't too sure which will give us the result they mean. If all else fails, my surgeon does go to extremes to cut down the costs of the procedure to make the price more 'reasonable,' but that amount is still way, way out of our price range and will require us to either ask our parents for help or take out a loan - both of which we'd like to avoid. It's just the longer we sit and wait to make a decision, the longer the appeals process, so the longer it could be before surgery. I'm not sure if the surgeon will let us have the surgery, pay the co-pay, and then continue the battle with the insurance, but he's such a great guy that I imagine he will.

In other news, I had botox injections done last Monday in a last-ditch effort to manage the pain until surgery, as I'm really kind of scared of the long-term effects of the steroid-based nerve block injections with the current issues they're already causing. Between nerve medications and some super pain killers, I am usually able to lessen the pain enough that I can walk to the kitchen and back before wanting to die, instead of turning over and wanting to die. But four weeks without the injections has been, to say the least, unbearable. The neuro said it usually takes about a week for the botox to 'paralyze' down to the level of nerves; it's been five days and I haven't noticed any change in my pain levels.

However, I did wake up at about 3 on Wednesday morning, stumbled over to wake Pat up and barely managed to get out the words "hospital. now. go." I felt like someone had taken an axe blade to my head and split my brain along the corpus callosum. My brain was exploding out of my skull. It hurt so bad that I wasn't even coherent enough to speak to the doctors or nurses until after the first Dilaudid injections. I was so ill that it even took super-duper anti-nausea medications to make me stop being ill long enough to even go through the CT scans. When they wanted to perform a spinal tap, I only shrieked in fear; luckily, Pat was there to explain that a tap was the *reason* for all this bloody shit in the first place. So they gave me even more Dilaudid and anti-barfs, let me rest, and sent me home. Plus, the pain killers made me walk like a penguin, so that was fun.

I must give highest, highest praise to the ER at the Kernersville Medical Center. I was registered and triaged within fifteen minutes of arriving, and the on-call doctor was in the room within twenty minutes of arriving, and I was out of the CT machine within 45 minutes. Admittedly, it was 4AM when we arrived so it wasn't exactly busy, but that's really impressive. I've been to the ER before with the same complaint - three days after the initial spinal tap - and hadn't been triaged or registered after over FOUR FUCKING HOURS. Everyone at this ER was super nice, they kept me warm, they patted my back when I was ill, and acted like they really wanted to help me get better. I won't talk about the huge black bruise in my elbow from them drawing blood for me; I feel that's far payment.

TL;DR - Same old shit. Hospital impressive. Same old shit.

Can't Things Ever go Right?

We were expecting the insurance company to deny coverage for my surgery. Insurance is a constant go around, and I almost never have a doctor's visit without angry phone calls, let alone specialist visits. So I didn't even for a minute dare to think that they might even consider approving the surgery.

But I didn't realise how devastated that denial would make me feel. It makes me feel so small, so worthless, so unimportant. Is my life not worth their time or money? Is my quality of life so far gone that I can't get it back? I've already done so much work in preparing to fight a denial, but it doesn't seem to matter at all.

Does any of it matter anymore?

I don't have anything to be thankful for this year. I can't even be thankful for my health, the smallest, most seemingly unimportant blessing.

It's getting harder and harder by the day. Sometimes I'm not even sure I want to get better. I don't remember what 'better' is, for that matter. It feels like another life that I lost somewhere a long time ago. Most of the time, I simply try to survive - I can't do anything else.

The nausea and dizziness are with me all the time now. There's a bouncy ball wrecking havoc on my stomach, and I can barely bring myself to eat anything except toast, and even that is a challenge most days. Any time I'm upright, even propped up in bed, my head turns into one of those coin whirlpools that used to be in shopping malls, my brain a little tugboat spinning round and round on its way downward into darkness. Then there's the blacking out. It's only for a second at a time, but that's far long enough to lose one's footing and crash into something or fall down. I used to feel okay driving, but I had one of those blackouts while driving downhill on a windy two-lane road, so that was the end of that real quick.

I wish someone had told me about the long-term side effects of having these nerve block injections and trigger point injections. I may well have acted more cautiously and not had the shots quite so often. Huge, dark purple stretch marks now cover my upper arms and upper legs indiscriminately, and they're beginning to creep down towards my elbows and knees and across my chest. They've all popped into existence overnight - I didn't notice any strange marks on my skin one night, the next night there were white stretch marks, and by the next night they were purple and tender and indented.

I keep trying to tell myself that by the end of this, I'll have some wickedly cool battle scars. But I can't bring myself to believe it. I can't even believe I'll get better.

Haven't written in a while because haven't had anything to say. It's simply the same old shit, the same waiting game, the same insurance company bull. My head hurts so much that I'm losing the ability to form sentences aloud, because finding the right word is like sludging through a bowl of oatmeal looking for one single oat, if the bowl was the size of a swimming pool. I'm fuzzy and foggy all the time now and I never seem to break through it anymore. Thinking of anything more complicated that "I should get up and get some water" or "I haven't eaten yet today" isn't worth it.

The physical head pain is so terribly unpredictable. Yesterday morning, my head felt like a small boat on the edge of an infinite whirpool, swirling around and around uncontrollably while being dragged down. Last night, it felt more like Andre the Giant had one of his immense hands at the back of my head, thumb behind one ear and forefinger behind the other, and was squeezing with the intent to pop my head open. Today, it's more like explosions or fireworks all along the afflicted nerves.

Mental illness medications work wonders when you're using the correct ones. But they can only help so much. And I'm on the way down because I can't see an end.

Because I Need More Things Going Wrong.

But such is the problem of severe nerve damage, neuralgia, and chronic bed rest. I've now spent the better part of two of the last four years on and off bed rest. Obviously, it's not enjoyable - quite the opposite. I don't really have much of a choice, since my head hurts so intensely. The pain isn't worse when I stand up or sit down or lie down, but it is so insane that even the thought of getting up and moving is impossible; sometimes, even my eyes hurt. Most days, I only get out of bed to shuffle back and forth between the bed, the kitchen, and the bathroom. I go days without leaving the house. It's not healthy, I know.

As it turns out, it's far more unhealthy and dangerous than I expected. Wednesday evening, I started having terrible pain in my left calf, just below the knee. I didn't think anything of it at first, because my pain is kind of like whack-a-mole all the time; I never know what is going to hurt, when it's going to hurt, how long the pain may last, or how severe the pain will be. When I woke up on Thursday, I felt like I was having the worst charlie horse in the world, but a million times more intense and much physically deeper. I still didn't think much of it; I simply put heat on it and wrapped it up and used an immense amount of IcyHot on it. Then I woke up on Friday and it hurt worse. Then Saturday and it hurt even worse. By then, I realised that this pain wasn't like rest of the neuralgic pain I've been dealing with; everything else was in my joints and only lasted two days at most. This was far more muscular and so much worse. So I decided that if the pain was still there on Monday, I'd phone my GP. I couldn't really walk, I couldn't put any weight on it, I couldn't engage any lower leg muscles without crying in pain.

Of course, I'm an expert worrier, and my brain always immediately locks on to 'worst possible scenario.' In my head, the worst case was DVT. Unfortunately, I have two significant risk factors - a family history (my father and his sister) and long-term immobility. When I told this to the GP, he immediately sent me downstairs to have an ultrasound. It was long and excruciating (and freeeeeeezing cold without pants on!), and it was longer than it needed to be because a) I have shit veins that are really far from the surface which make drawing blood nigh impossible, and b) my tremors get worse with the amount of pain I'm in, so my entire body was essentially vibrating. The procedure took over an hour, and then it took the doctor another two hours to phone back with results.

Good news and bad news, like always. I don't have DVT, but there are a number of small blood clots in the superficial, surface-level veins slightly below and inside my knee. My GP and the radiologist weren't overly concerned since they were small and not in any danger of breaking loose and migrating. But I'm under strict orders to take Advil every six hours, keep moving my legs as often as I can by doing 'exercises' every half and hour or so, and to come back in on Friday if the pain isn't better or come in IMMEDIATELY if the pain worsens or moves.

So I suppose it could have been worse. They decided not to put me on any blood thinners for the time being, although that may change. That's actually good, because those meds can really interfere with surgery. And what turned out to be wrong was pretty damn close to what turned out to really be wrong. Don't get me wrong - it hurts more than any words could express. But it isn't as serious as it could be. Hooray?

When Does 'Cabin Fever' Become Something More Serious?

Although I was only formally diagnosed as bipolar II earlier this year, I've "been bipolar" far longer than that. Looking back, I was probably about 20 when I started exhibiting most of the usual symptoms of bipolar disorder; I simply didn't know what they were or what they signified. I never thought anything of them other than 'well, yeah, sometimes I get a bit out of hand and feel like I'm losing my mind and sometimes I don't remember doing things I probably shouldn't do.' But bipolar disorder is still so stigmatised in society that it never crossed my mind that there was anything wrong with me other than my depression.

It wasn't until the end of last year that I began to suspect something else was going on. The veritable buffet of anti-depressants helped a bit, but I never felt like I was on an even keel. I spent most of my time in varying stages of numbness and emotionlessness, largely unable to even bring myself to be able to care. I knew the medications weren't doing what they should, but doing anything to change that was well more effort than I was willing to put forth. But a few long, long conversations with an old friend left me suspicious of my own illness. I made the massive mistake of going to the DSM-IV and reading into bipolar disorder, which one should never, never, never, ever do. Like seriously.

So I phoned in for an appointment with the indefatigable Dr. Latimer, the world's best GP who had diagnosed my original CSF leakage years before. I explained to him how sometimes I felt that I was going completely insane, frantic, angry, aggressive, careless in addition to the depression, and how I swung between the two extremes. I know it isn't helpful to go into an appointment with your own personal diagnoses in your head (WebMD syndrome is a real thing!), but I grokked that there was something else happening that a) I didn't know what it was and b) wasn't being treated properly. Dr. Latimer listened carefully, and then said that he thought that I probably was bipolar, and we needed to start treating that as well as the depression. He added a mood stabiliser to my daily routine, and told me to come back in a month.

Within a month, I knew that the medication was working. I felt more balanced, more even. My depressive cycles tend to be really long - often upwards of five months - with short, one- or two-week manic cycles, and not much time in between.  Now that I know this, I have a much better innate sense of when I'm about to skid. I found a new psychologist and therapist down here as soon as we moved. My new psychologist checked my medication history and upped the dosage of the mood stabiliser over the course of two months.

And it's a wonder how much the correct dosages of the correct medications help. I don't think I ever have or ever will feel anything resembling 'normal' - I'll never function normally or act normally in social situations, I'll always have to manage being ill, and I've accepted that over a long period of time. Now it's something I own and almost am proud of; yes, I do have a mental illness, but I'm doing as well as anyone can, considering all the other shit I deal with. I'll always struggle, but I have to laugh. I call my medications my crazy pills. I make jokes at my own expense. Because the worse I feel about myself and what's wrong with me - because there isn't anything "wrong" with me, I'm simply wired differently from most people - the worse the mental illness is and the stronger and deeper it takes hold.

I was doing surprisingly well with therapy and my new medications. Until this occipital neuralgia reared its ugly head again. Then suddenly I'm faced with the loss of most of my coping mechanisms for both depression and mania. I can't go for a run when I'm stressed. It hurts my neck and my eyes to read for more than about half an hour at a time. I can't drive with the tremors and blackouts, so I can't get to therapy. I can't even take the dog for a walk because I can't move my head. As this started, I was dead convinced I was about to skid face-first into the Marianas Trench of depression; all the warning signs pointed to it. But with the right meds, I skipped over it. I had a few weeks when I felt generally "urrrrrrrghhhhh" but it was nothing compared to my usual depressive cycle. Now the mania is setting in, and it's worse than it's ever been. I'm used to always running fairly high on the anxiety scale and having my body be in 'flight' mode a significant percentage of the time. But now it's all the time. I have terrible jitters in addition to the tremors. Spending all the time in bed takes away from anything enjoyable that I might do otherwise, so I get extremely fidgety. Then I get angry about being stuck in bed and fidgety, and that's its own downward spiral. My mind races at a million miles an hour, so fast that many times I can't even process or understand what I'm thinking and what's happening in my head. I'm getting careless about myself; I know I shouldn't get out of bed, but I can't stay in bed so I get up and then fall down and bang into things and make my head hurt even more. With the medications, I know I shouldn't drink much, but again, I don't care and I do it anyway because it lets me forget for an hour or two at a time.

I've never really thought that I was a danger to myself. I'm passively suicidal, but not actively so - I'm far too much of a wuss to ever kill myself, but it would be great to go to sleep and never wake up again. But the longer this mania lasts as I get sicker, I can't be sure that I'll be able to keep it all together. Don't worry - I'm still a pansy. It's just getting harder and harder with every passing day to keep the mania under control.

Today's Pain Brought to You by...

My left knee-calf and my right shoulder. Nothing like waking up at 2AM to both spasming. I have to do this weird skip-hop-walk thing because I can barely put any weight on it. Also, flamingo-ing. Whee.

Wait, What? Something Good Happened?

So yesterday was the all-important consultation with Dr. Ducic, *the* expert in nerve decompression surgery for occipital neuralgia; he's the one that developed the procedure. If you're going to have surgery in your head, you want the best, the one who's been doing it the longest, the one with the best success rates.

The problem with that was the 6-ish hour drive home. At the moment, I am physically incapable of being comfortable. It doesn't matter how I prop or wedge myself up or how many pillows I use, every position I try to sit / lie down / relax in hurts some part of me. Add into that mix a long car ride and a Worf that doesn't like to stay still in the car, and it equals extreme pain. Luckily, we stopped in Charlottesville to see a friend for lunch, so we broke the trip up, but by the time we made it home, I was in so much pain that I could barely stand up to get out of the car and walk inside. Needless to say, I immediately went upstairs and fell face-first into bed. Even the thirty minute drive to the doctor's office was excruciating. And no pain pills means that it's simply going to hurt and I can't do anything about it at all. Really, it's super funtime.

Anyway, after the typical wait-forever-for-the-doctor-to-see-you routine, Dr. Ducic finally came in. I don't know what I was expecting - nothing, really, I guess - but he is so humble and soft-spoken and kind. It would be quite easy for someone of his skill and renown to become egotistical or arrogant, but he's the farthest from. He asked a few questions and poked around my head for a minute to check where I flinched in pain, then stepped back across the room.

Then, in a blur that took me a good few seconds to process, I heard what I'd been longing to hear but couldn't bring myself to hope for or be excited from. He looked me straight in the eye and said something along the lines of "Okay. Let's get this underway. Let me show you what I'm going to do for you." I know my memory is shit right now, but I was too stunned to even process what he said.

He's going to do my surgery. I won't be in pain anymore. What's going to happen is that he'll put me under with a general anesthetic to make two small, 2" long incision right at the base of my skull (and without having to shave any of my hair). Then he'll cut away some of the muscle tissue around the greater occipital nerve so that it has more room to swell without being constricted. He'll also completely remove the lesser occipital nerve, so there will be some areas of numbness / no feeling behind my ears. Frankly, I'm totally okay with no feeling at all over pain!

This procedure works for between 80-90% of his patients. For those who don't have complete or significant relief - all of maybe 15% of his patients - he will go back in and remove all of the greater occipital nerve, leaving virtually no feeling at all in the back of the head.  However, that's a slightly more invasive procedure, and since so many people have such marked improvement, he doesn't like to do that removal without first trying the less severe version; I think that's perfectly fair. 

But right now, we have a number of obstacles still standing in our way.

1. He's booked into January. Because of my bipolar and anxiety diagnoses, he actually triaged me further up; I guess this is the only time I'm glad to be bipolar.

2. He's moving offices as of Jan 1. It'll be nice not to have to go into DC to MedStar G'town for the procedure, but moving is time-consuming and takes away from other things that need to be done - like his surgeries.

3. Insurance. It's kind of sketch to begin with, as many insurance companies consider the procedure an "experimental" one and don't like to cover it. I don't understand it at all, as the success rates are high and one procedure can easily 'cure' a patient so they won't require treatment again for this problem, so one would think it was a long-term cost-saving option. Unfortunately, my insurance company is one of those that tends to fight paying the procedure, although it does depend on which state the insurance runs through. It's entirely possible that they may decline to pay at all. That'll leave the only options as a) self-pay, or b) don't have the surgery. Best estimates run around $15,000 out of pocket, though that might go down a bit with a surgical center instead of a hospital. I know Patrick and I couldn't pay that under any circumstances; our parents are willing to help out, but I don't think I can ask or expect that of them. Luckily, Dr. Ducic's staff takes care of the pre-authorization nonsense for their patients, as they have better luck than the patients themselves. 

4. Scheduling. They don't schedule you in until the insurance bullshit is worked out. 

So anyway. This is the first positive news I've had in many, many months. I'm more relieved than words that Dr. Ducic has agreed to perform this surgery on me. But I have so much else to worry about in the meanwhile. And I don't wait well. The end is in sight, but it's going to be a long, trying three months.

Part of the Game, Solved

After the back-and-forth phone tag nonsense that accompanies every doctor's appointment and nurse's visit and insurance company mayhem; and the infuriating inability to actually get in contact with the people you need to contact about a million different things; and my complete lack of patience and Patrick's incredible levels of frustration and anger...

I have my surgical consultation / pre-operation appointment on Monday at 2.45 with Dr. Ducic. He essentially triages his patients, so it could still be a while (like, January) before the actual surgery, or it could be as soon as next month. It all depends on his current case load and everyone's duration and severity of pain. Being as I'm completely and utterly debilitated and have spent about 2 1/2 of the last four years on bed rest or on restrictions, I'd like to think the surgery can happen sooner than later.

I have to go to my regular neurologist here so I can have six or eight shots into the back of my skull so that I can even think about bearing the almost six-hour car ride home. It will be a fun trip up there with a dog with fleas, a cat with fleas, and a Bina who may or may not be able to actually sit upright for any duration of the trip.

This part of waiting sucks big time, too. I know it's coming, but when? Can it be soon? I hate not being in control of what is happening to me.

The Games

Every morning feels like some sick, perverted game show of "Where am I Going to Hurt Today?!" I never know from one day to the next where the neuralgia and tremors may strike. Some days it's bilateral; other days it's in the diodes down the left side of my body (as Marvin says). Yesterday it was my knees and ankles. Today it's all in my shoulders and elbows, leaving my essentially unable to move my upper body. Oh yeah, and my head hurts too, since my last injections were on Friday morning. Where's it going to hurt tomorrow? No one knows! At least the tremors in my right hand and lower arm are predictable - it's all the time.

Then there's the waiting game. Patrick heard back from Dr Ducic on Monday afternoon that I've been accepted as a candidate for his nerve decompression surgery. Now we're in the submit all the paperwork and wait for an appointment stage. Frankly, it's worse than when we hadn't heard back yet.

I can't even permit myself to have any sense of hope or optimism. I've always been the type to not have expectations so I don't get let down; if I do have any expectations I plan for the best. That way, if something good happens I can enjoy it. It's easier that way and I get hurt less often and less severely.

Really, I'm not having any fun at all.

The Other Physical Problems

Like the second bout, I've started experiencing a number of other physical symptoms that can only be related to the occipital neuralgia and the original spinal tap.

About two and a half weeks ago, I noticed that my right arm was extremely twitchy. At first, I didn't think anything of it; I knew that some anti-depressant and anti-seizure medications can cause some tremors. I went through the side effects of the medications I'm currently on, and found that only one of them has been noted to cause twitches and tremors, and only in less than 1% of reported cases of side effects. As the days went on, the tremors became worse and worse. Now it's so bad that I cannot hold anything in my right hand because I cannot keep a grip on it; drinks slosh out of my cups, pens go all haywire across a page, my cell phone ends up in my lap or on the phone. At first, it wasn't painful, more of an annoyance. Over the last week it's become quite painful - the muscles are always tense and moving, and it's exhausting.

Then about a week and a half ago, I was starting to get super achy all over. I didn't think anything of it at the time, because it happened during both the first and second bouts of this. I knew that the pain would start creeping down from my shoulders; I just didn't know when. Then last Saturday morning, I woke up at about 3.30AM (which, unfortunately, is my usual wake-up time these days), in such excruciating pain that I couldn't breathe or yell for help. My knees felt like they were being stabbed with poisoned, hot daggers down the muscles from right above my kneecaps to halfway down my thighs. It would pulse for ten or twenty seconds, then give me a 'break' to recover in which I could only sob and gasp, before the pain came again. This went on for hours. Then it went on all day. Then it went on all night. I didn't sleep at all Saturday night; I could only doze in and out consciousness between cycles. Sometimes I'd get twenty minutes between the pains; sometimes I wouldn't even get a minute's break. It didn't matter if I was moving or not, if I was standing or sitting or lying down. Nothing changed the intensity or the frequency.

At first, I blamed myself, because I'd felt well enough to go out for a bit on Friday night and managed to stand for two hours; I thought maybe my knees were simply staging a revolt because they hadn't been used much in a month. But as Saturday became Sunday, it was clear something else was wrong. We needed to go to Costco for the important stuffs, and I was already well gone insane, so I said I'd go with Patrick because I had to get out of the house or I'd break something. I nearly fell over more times than I can count in the shop; I kept having to stop and try not to scream in pain. It wasn't the best idea I'd ever had.

Then when I woke up on Monday morning, again around 3.30, I could add my right shoulder to the list. And the pain was spreading down from my knees into my ankles. Over the course of the week, it was from my shoulder into my right hand. My left arm hasn't troubled me yet. We'll see. I frantically called my neurologist because all these new, painful symptoms were appearing in such short succession, and seemed to be radiating out from the core. Dr. Crowell ordered a full battery of blood tests looking for any autoimmune problems, but all the tests came back clear. I hate when that happens; I always hope there's something wrong that can be seen in the bloodwork and then can be immediately treated with meds. Not my luck.

Right now, all we have to go on is damage not simply to the occipital nerve, but to the other nerves that route through the Atlas/C1 - Axis/C2 vertebra. All of the spinal and cervical nerves pass through this tiny spot. All of them. And because it's such a compact space, damage to any one nerve can cause damage to other nerves. When one nerve is essentially permanently damaged and inflamed, it puts pressure on the other nerves around it. Those nerves then start freaking out, sending and receiving incorrect electrical impulses to/from the rest of the body. And there is nothing anyone can do about it because the original problem - a swollen, inflamed occipital nerve, can't really be treated; all anyone can do is mitigate the symptoms.

I really, really wish I could take any painkillers. At this point, I'd gladly stop my anti-depressant and mood stabilisers for a while until I can not be in pain.

Nothing is Ever the Same

So now that this is mostly caught up with the last three-and-a-half years, I think I'm going to spend the rest of however long this lasts chronicling everything that's going on as it's happening. I never wrote any of this down when it was happening; I either couldn't remember it long enough or I was in so much pain that I didn't care. I had the medical details down well enough after speaking with what felt like a thousand different doctors and medical professionals, but I never stopped to think how I felt and how I was dealing with what was happening to me. From here out, then, I suppose this won't be so much story, but more stream of consciousness.

No one tells you how exhausting pain is when it's chronic pain. It makes you weak, which makes you less able to mentally and physically fight the pain, so the pain makes you even weaker, which makes you even less able to fight... It's a terribly vicious cycle that doesn't end well. And then when you become too weak to fight it, other stuff goes wrong. You're in pain all the time, so your body is running at a million miles an hour all the time - blood pressure and heart rate go through the roof, you're always hot because your bp and hr are so high, you overheat and you can't cool down, and you end up hungry but you can't bear to eat because the pain makes you nauseous. All I want to do is sleep, but that isn't happening either because I spend all day in bed resting and so I don't need as much sleep which is crap; I'm running on about five hours a night - on a good night.

And seriously. There's only so much crappy tv one can watch before one goes absolutely stir crazy. I'm totally losing my mind and going all cabin fever. I'd like to feel that I had the strength to go outside for a quick walk about the building, but I know I can barely even make it down the two flights of stairs before I overheat and need a rest. All this takes a serious mental toll. I need to keep what little strength I have so I need to keep eating, but I've gained thirty pounds in the last three years, and I don't even recognise myself in the mirror anymore because there's fat and curves in places there shouldn't be and it makes me so disgusted and uncomfortable that I can't bear to look at myself in the mirror. And none of my clothes fit anymore, so that helps.

I'm being pulled so far in so many different directions that I can't do any of it. How long before my brain completely shuts down and I check out for another six or eight months? I'd really like it if someone could just put me in a medically induced coma until I know if I can have this surgery, because I'm so tired that I don't think I'll ever be able to fully recover.

Ch. 7: Round 3; Or, I Think I May Well Just Die Now

September 2013 - ??

Around the time we were getting ready to move to North Carolina this summer, I found myself thinking "oh gosh. It's been a year and a half since my last bout started. I had a year and nine months between the onset of the first and the onset of the second. If it's going to happen again, it will probably be fairly soon. Shit." Then I refused to let myself think about it any more than that, partially because it did no good, and partially because I was fairly certain I would not be able to live through it again. I must have jinxed myself.

Come the middle of August, and I start feeling really strange, off, weird. I couldn't put my finger on it, but I knew something was going on inside my body and that whatever it was couldn't possibly be good. For a while, I was pretty sure I was about to crash head-first into a major depressive crash; I had most of my typical symptoms - overall fatigue, weaknesses, headaches. exhaustion, muscle tenderness, inability to concentrate on much. It didn't occur to me that it could be something else.

Flash forward about two weeks to the very end of August. I wake up one morning, and I know exactly what's wrong. Again. Oh god no. Right off the bat, the pain wasn't as intense is had been, but it was more than enough to keep me still in my bed from fear. Right. Time to find a neurologist down here that could / would perform ONBs for me. I futzed around online and found a multi-doctor practice in Winston-Salem that explicitly said they performed the procedures. I called them, and they set me up with Dr. Crowell, who could see me for an initial appointment the next day. He said he didn't perform the ONBs himself anymore, but other doctors in the practice did, so hang on while he went and pestered some of them. Off he went, and traipsed back about ten minutes later with Dr. Meyer, who did administer them, and who happens to me the most adorable older man with a wicked sense of humour. He did the ONB right then and there, and told me to come back as needed.

He was dead shocked when I phoned in about a week later, begging for another one. He said he's never heard of a patient needing ONBs with that short of a lapse between. Some patients are incredibly lucky; they can go months between injections. Not me, nope. And then another week later. On the third visit, Dr. Meyer suggested that maybe it was time to look at more serious, permanent options, as the cumulative effect of the steroids could cause long-term adrenal and kidney problems - and lord knows I don't need another problem to deal with, and certainly not a problem that could have been avoided in the first place.

Then I remembered there's a surgeon, Dr. Ducic, with the Peripheral Nerve Institute at Georgetown who pioneered nerve surgeries called nerve decompressions. What he does is go into the back of the head at the C2 vertebra - where all the spinal nerves are located - and cut away small slices of whatever tendons/muscles/ ligaments/blood vessels are strangling the inflamed and swollen nerve. This allows the nerve to still be inflamed and swollen as necessary, but gives it more space to do so. Dr. Ducic actually started out as a plastic surgeon, but it seems that field works perfectly for these kinds of nerve surgeries because plastic surgeons use the finest tools and work in the smallest layers of tissue for their work. The use of nerve decompression surgery for spinal nerves is quite new, however, less than ten years old; Dr. Ducic was the first, but even now there are only a handful of surgeons in the country that perform it. However, because Dr. Ducic is the closest practicing surgeon to me, and because he's the surgeon, we knew it would be hard to get in.

But we've filled in the application packet for a surgical consultation. For out-of-the-region patients, he'll do both the consult and the surgery on the same day, eliminating the need for multiple trips. It can take two, three, four months from when a patient submits their packet to their actual surgery, so I know it's going to take time. I can't take any of the powerful painkillers that are commonly prescribed for nerve pain - I mean I could, but I would have to stop my bipolar medications to start the pain medications, and that would be a bad life choice, but this is a bad life choice, too - so instead I"m on a serious anti-inflammatory for the next month or so, at least until we have a better idea of the timeline.

The other option to keep in mind for now is Botox. It's injected into the nerves, just like ONBs, but it lasts three to four months. I'm not convinced that Botox would work that long, especially since the ONBs don't last me nearly as long as they are 'supposed to' last. It is a possibility, however.

But with this round, there are a great deal more problems going on under the surface. Lots of things are going wrong, and I am completely confined to bed except for about two or three hours a week immediately after I've had my ONB. It isn't good.

Ch. 6: Round 2.5; Does it Ever Stop Getting Worse?

January - April 2012

The first occipital nerve block worked really well. For about four days. Then the pain came back again, just as bad as ever. That wasn't supposed to happen. Most people go weeks, even months, between ONBs. I got days. I called the neurologist, and she had me come in for another set of injections. Then again, the same problem, where I was flat out again within five days. That really wasn't supposed to happen. So Dr Chehrenama set me up with a schedule of two sets of ONBs a week, one on Monday mornings and one on Thursday mornings, until I started to show some improvement. Having the shots early on Monday meant that I could generally work Monday, Tuesday, and Wednesday, then spend Thursday - Sunday resting and doing nothing. Of course, it wasn't a great plan, but it was the only plan we had. I didn't always make it to work, and some of the days I did go to work I didn't get much done, as moving furniture or toting boxes from one building to the other made the occipital nerve freak out. I always had plenty of paperwork and research and filing to do, though, so I kept myself well busy.

The rest of the time, I spent battling a million other problems. As someone who's dealt with depression for what amounts to my entire life, this kind of hopeless situation threw me off the deep end something terrible. A cycle of seemingly endless pain that never truly got better or went away unless half of my scalp was temporarily paralyzed isn't a great mindset to find one's self in. I'm not a social person, and never have been, but I couldn't go out even if I wanted to; I couldn't go see friends, I couldn't go get a beer after work, I couldn't have date night with Patrick. I found everything painfully exhausting and draining to the point that even talking to Patrick or Mike or Andrew for more than ten minutes completely drained me. Chronic pain isn't something one can simply trudge through - it's a fight every minute of every hour of every day, and it begins to take its toll mentally. I shut myself away more and more.

The physical symptoms weren't helping either. The bilateral pain was something entirely new. It was like double the pleasure, double the fun. I couldn't lie on my back, so I was forever tossing and turning in some vain-ass attempt to find a position that didn't kill my neck or my shoulders. With the bilateral pain, the pain and muscle tightness in my neck and shoulders and upper back also doubled. Dr. Chehrenama recommended specific trigger point injections directly into those muscles to help them relax as well; as with the ONBs, I'd feel relief for a few days, then it'd be back to the same old grind. Then weird, unexplained things started happening. I lost all feeling down my right arm with the exception of my fingers, which constantly tingled. My arm became literally useless; I spent most of my time holding my right arm across my chest with my left arm, almost cradling it. Yay learning to drive with one arm, because I didn't have a choice - I still had to get to appointments and work. Eventually, that feeling returned, but those weeks were indescribably unpleasant.

By about March, Dr Chehrenama felt I'd recovered enough to switch me over to one set of ONBs a week. I wasn't thrilled, but I was becoming more and more able to cope for longer periods. The pain still came back within four or five days, but the pain that did return was slightly less unbearable. The doctor couldn't really give an answer to why the pain was lessening, other than maybe the nerves had had enough time to rest and the muscles/tendons/ligaments/blood vessels had finally relaxed a bit with so much forced rest so that they weren't strangling the inflamed nerve any longer. The nerve could well be inflamed still, but it wasn't being physically constricted anymore. By May, I only had occasional ONBs and trigger point injections as I needed them - once every two-ish weeks.

By the summer, I felt as normal as I thought I was going to. I could slowly start exercising again and having a bit of a social life (well, I mean, as far as I have a social life). I was cautiously hopeful.

But if it happened a second time out of the blue, who was to say it wouldn't happen again?

Ch. 5: Round 2; Or, Oh No, Not Again

November 2011 - January 2012

After the fluke in September, life returned to my new 'normal' standard of general discomfort but not much pain. I'd enjoyed the fall, with trips with Patrick to wineries and the Rennaisance Fair. The ankle I'd accidentally broke without knowing had healed up fine, and I could work out. Our parents met for the first time over Thanksgiving dinner with some of his extended family. Everyone ate too much and drank too much and laughed too much, then trundled home to sleep it off - like you do. Patrick and I went back to his new place, as I'd had too much wine to drive; I figured I'd go home sometime the next day-ish.

I woke up the next morning and went to stand up to go to the bathroom. Crash. Head explode, on the floor, before I knew what was happening. Oh god. Not again.  I decided to stay in bed all day and throw up and black out every time I tried to move and cover my entire head in icepacks, and hope that it would pass in the next two days, like it had last time. I was almost getting to be an expert in this. Patrick was understandably freaked out again, so he phoned my parents to let them know it had happened for a second time in two and a half months, but since I wasn't really panicking about it, my parents didn't panic about it, and said we'd take it a day at a time and hope this, too, went over quickly.

But the next day it was worse. And the next day. And the next day. The pain was intensifying and spreading into my neck and shoulders and back again. I couldn't breathe or blink without nearly passing out. I couldn't keep water down, let alone ginger ale or tea or toast. I wasn't sleeping, only dozing, because the pain was so intense. I could feel every single heartbeat at the back of my head where the pain was centered. And the pain there had spread to both sides of my head, instead of being confined to the left. As the pain increased day after day, I sank deeper and deeper into a massive depressive crash. When you're in so much pain that even the slightest movement makes you black out, it becomes increasingly hard to see that there's a way out, that there's a solution, that there's even something that can temporarily mitigate the pain for an hour or two. And the longer it goes on, the further and further down the vicious spiral I went. By the middle of December, I was in serious, serious trouble. The pain kept getting worse, and I simply wanted to kill myself.

We went to work finding a new neurologist who could possibly help. My fantastic GP, Dr. L., recommended his daughter's neurologist in Alexandria, saying that she thought outside the box of 'traditional' illnesses and wanted to find the root cause of symptoms rather than simply treating them. With Dr. L's in with the practice, I got in to see her in a week; usually, a new patient can wait two or three months for an initial visit. Despite being scheduled in for a half-hour into visit, Dr Chehrenama spent an hour and a half with my parents and I, trying to pin down exactly where the pain centered, where it radiated to, how it felt, how it changed, what my other symptoms were. She requested a series of traditional MRIs and a super-special cineMRI to make sure that there was CSF moving normally inside my brain without pooling and creating a little cyst-like pocket. It took a while, but she finally gave me an answer.

Occipital Neuralgia. There really was something wrong "in my head," a very definite something wrong. The occpital nerves that run from the base of the spinal cord and up-and-over the skull to behind the eyes, were essentially going haywire. The nerve highlighted in yellow here is the occpitial nerve; further up, it branches into the greater occpitial nerve, which runs to behind the eye, and the lesser occipital nerve, which runs more around the skull to behind the ear.

Suddenly, it all made sense. The intense, constant pressure of my brain sitting on the base of my skull and the nerves at the top of my spinal cord had damaged the occipital nerve. When a nerve is damaged, it usually becomes inflammed and swollen. This puts pressure on any muscles, tendons, ligaments, and/or blood vessels around it. In short, what was happening in my head was that my occpital nerves had been damaged and were swollen, pushing against everything that was around it. Then the muscles in the area went into what Dr Chehrenama called "protective danger mode," mostly freezing closed around the damaged area. This made the nerve swell and become more inflammed. The pain I was feeling was the nerves misfiring, sending too many electrical impulses all over the place, because it didn't know what else to do.

So the trick was going to be managing and lessening the inflammation to allow the muscles to relax, which would allow the nerve the space to return to its normal size and stop sending the panicked pain messages to my brain. To do so, she prescribed a series of occipital nerve blocks, or ONBs - a series of steroidal injections mixed with lidocaine, injected directly into the nerve. Yes, it feels as uncomfortable as it sounds, having needles placed directly into the nerves at the back of the skull where there isn't much skin and no muscle or fat to protect it. Luckily, the lidocaine kicks in immediately, so I only ever feel the first tiniest pinprick. 

I went back to the office a few days later for the first set of injections. Within thirty seconds of the injection, the entire back of my head was completely numb, which is an odd sensation in itself (hey, where are my ears? I thought they were there a minute ago...), but within a minute, there was no pain at all. It was gone. I couldn't feel a thing. I could poke at my head, pull my hair - nothing. It was the first time in about twenty months I wasn't largely uncomfortable. 

Now I had an answer. But everything wasn't better yet. What next?

Ch 4: Round 1.9?; Or, A Preview of What's to Come

(Technically, I'm furloughed. So between that and bedrest, I have absolutely nothing to do right now. Thus, more blogging).

September 2011.

While I'm still uncomfortable most of the time, things are by-and-large better. I'm working mostly full-time again; the days I don't feel well enough to work, my boss set me up to work from home for a few hours. I'm actually running again, and have worked my way up to a fairly steady seven-ish miles five days a week, so the weight I lost after almost a year on bedrest is totally gone. I still can't lift weights or anything weighing more than a few pounds, but that was a sacrifice I was willing to make. I knew I wasn't totally healed and completely back to normal, but it was close enough, and I was happy with it.

After a long day at work - at a brand new job in a historic house, just what I wanted to do - I went to Patrick's for whiskey and movies - as was pretty standard. We'd been together for about five months; he and Mike were packing up to move into a bigger townhouse around the corner in Reston with their mate Andrew, and were rightfully excited about it. On the 10th, Patrick and I were heading to Pennsylvania to attend some friends' wedding. But I woke up that morning and my brain exploded out of my skull as though a grenade had been set off inside my head. I tried to turn over to get Patrick's attention, and blacked out. I came to just in time to whimper and gesture for the trash can as the pain-induced nausea reared its head again. At first, he thought I'd simply had too much whiskey and was hungover, so he went to fetch crackers and water from the kitchen. I couldn't even stomach the idea. When he realised that I was panicking and freaking out and in such immense pain, he panicked and called my parents. I barely remember them stopping by, but I know they did, because I remember begging Patrick to cover the tattoo on my back as my parents didn't know about it yet. He didn't get the memo, but they were panicking so much themselves that I honestly don't think they saw. I spent most of the day passing out, coming to, throwing up, and then passing back out into a sleepless haze.

But the next morning, I woke up and was significantly better. By the third day, it was as if none of it had happened and I was back to the "normal" level of discomfort. Nevertheless, I still took it extra super easy for about a week, staying with Patrick, lounging about, doing a lot of nothing. Not exactly how one wants to spend the early days of a relationship, but it was far better than what happened two months later.

Ch 3: Round 1.2; Or, Now What is it? This isn't the Same

September 2010 - April 2011

By the end of summer, I still wasn't much better. I was attempting to slog through life, but I wasn't having too much success. My full-time contracting job became a maybe-fifteen-hours-a-week contracting job because I still could not to sit up for more than a few hours a day. I started using the elliptical again, but could only manage about a mile a few days a week. I'd made a promise to my ballet teacher when I was a teenager that if she took the next ballet exam in the programme, I'd take the next one too, but there was no way I could spin or jump. Riding the Metro remained impossible, as even going the four stops to work made me so nauseous I'd have to get off the train. Six months later, no significant progress at normality.

The headaches continued. And they were spreading. Instead of being centrally located at one spot at the back left of my head, about three inches around from my left ear, the pain creeped down into my neck, into my shoulders, into my back. All the muscles in the area contracted and froze into place. I started looking as though I could have been the Hunchback. I had no range of motion in my neck. I couldn't pick up anything of any weight as that caused me to black out. Of course, the headaches kept coming, leaving me bedridden a few days a week; even when I wasn't bedridden, the pain was always there, throbbing away.

So back to the neurologist. Unfortunately, she had no more ideas than anyone else, and suggested that my body was still trying to cope with the damage from the CSF leak. She could only recommend continuing bedrest as much as possible, wearing a corset whenever I was upright to keep everything in place, and drinking as much water and caffeine as I could. The second two posed no issue; the first was becoming increasingly unpleasant, to say the least. One can only spend so much time in bed before going crazy, and by this point, it had been about eight months. I felt I'd watched every movie and television show I'd ever wanted to see. I'm not exactly the most social person, but I wanted to have the ability to go out and see people if I felt like it. It's mentally and physically and emotionally draining.

Back to the neurologist. She recommended starting a round of physical therapy to help loosen and calm down the muscles in my neck and back. She thought that there was so much damage to the base of my brain and the top of my spinal cord that the muscles had contracted in place to protect my brain and upper spinal cord. If the muscles were allowed to relax some, maybe those areas could rest and heal. So I started PT two days a week in December. I had exercises to do three times a day at home. I never felt that it helped, so I stopped going in March, I think.

By April, the headaches were mostly gone. I was still extremely aware of the pain - it twinged whenever I did any sort of physical exertion, I still couldn't lift anything more than about five pounds. I pushed my way through my ballet exam - because I said I would - and somehow passed. My memories from this time, too, are spotty. When the brain is so busy processing pain, few memories are processed into short-term and long-term memories.

But something had happened in December. On New Year's Eve, my college roommates dragged me to a party because they knew I needed to get out of the house for something. I knocked on the door, and the cutest guy I'd ever seen answered the door. He invited me in, and a giant cardboard stand-up of Boba Fett greeted me. I had no reason to think he would change everything.

Ch 2: Round One; or, What it Feels Like When Your Brain Bangs Around inside Your Skull

Feb., 2010

I came to on the floor in the worst pain I'd ever been in, nauseous and dripping with sweat. I didn't know how I'd got there or what had happened. While trying to haul myself into a sitting position, I passed out again and collapsed back to the floor, gasping and whimpering because I couldn't even cry.

This wasn't a headache. Most people are discomforted by headaches and can largely work through them. This was passing out every time I turned over in bed; this was the feeling of a grenade exploding inside my skull every time I breathed; this was wanting to cry every time my eyes moved in their sockets but being too afraid to do so. Or so my parents told me later. I don't remember anything. I remember leaving the hospital, then I have essentially no memories at all for the next three weeks; the weeks following that are spotty at best.

We had no idea what was wrong. We knew that I'd probably have a headache the next morning, but this was more than that. None of my discharge paperwork mentioned anything of this magnitude; they only recommended taking it easy for a day or two. There was no mention of "if symptoms x, y, and z occur, go directly to a hospital." We phoned my neurologist, but they were closed from the storm. Same with my family practice doctor. My parents decided to hang on for one day until the worst of the storm was over, then re-assess.

The next day came. And then the next. And the next. My condition continued to worsen. I was throwing up and blacking out at the same time; I couldn't keep water down; I couldn't so much as move my legs in bed. I couldn't sleep, I only dozed in and out of consciousness all day. And we were snowed in. Mom couldn't shovel snow because she'd just been diagnosed with cardiomyopathy. Dad had only broken his knee four months earlier and was adjusting to crutches after months in a wheelchair. Alex was away at university. There were multiple feet of snow, and the second batch of Snowmaggedon was due the next day. If we had to make a dash for it, it was now or never. Dad phoned his brother and begged him to come over, help dig us a pathway out the house, and drive us to hospital. Uncle Bill showed up, and off we went.

Lesson learned: never go to Potomac Hospital in Woodbridge ever again. And if one needs admittance to hospital for something that's truly an emergency, don't drive yourself in, call a fricking ambulance. Signed in and went to curl myself into some form of fetal position ball in one of those chairs that doctors' offices have that somehow are the most uncomfortable chairs in the world. Check-in staff ensured I'd be seen right away with such intense head pains. Six hours later, I still hadn't even so much as seen a triage nurse. Sobbing and passing out all at once, I begged to simply go home. Sitting in hospital. being forced to sit rather than lie down, made me feel a million times worse. Uncle Bill drove us back home, and I collapsed onto the sofa in the living room, which became my bedroom for most of the next few weeks until I was "okay enough" to go home.

Next morning, we call my family practice doctor. He's treated all of my family for a good ten years now; he looks like Jeff Goldblum, has a wicked sense of sarcastic dry humour, and totally gets how weird my family is. He says that he doesn't have any openings today, but to get in here or else, and he will see me the minute I get in.  There's a pitch black room with an exam bed ready when I get there, and Mom said I was back in the exam room and Dr L. was in to see me within three minutes of us arriving. Mom and Dad explained my symptoms. Dr L. listens, says "you wait there two minutes. I'm going to make a phone call," and comes back in five minutes with a prescription for a blood patch procedure at Prince William Hospital around the corner. He told us he suspected that the botched part of the spinal tap had caused a major leak of my CSF fluid out of my spine and probably into my lymph system somewhere. Because I had no CSF fluid in my spine, there was no CSF to protect my brain inside my skull - the fluid that lets the brain 'float' inside the skull without resting on the base of the skull and the top of the spine, and that cushions it from knowing around into the skull. Every time my I moved, my brain moved, causing traumatic bruising to my brain itself; every time I was sitting or standing, my brain rested directly on top of my spinal cord.

Around the building we went to the hospital. At least they had softer, two-person 'armchair-style' chairs in the waiting areas while Mum filled out my paperwork and then while we waited in the phlebotomy labs. The team took me in immediately - in the middle of a blizzard, they didn't have much to do, thankfully. For the first time in my life, a doctor fully explained a procedure to me, including the risks from the procedure, side effects, and what to watch out for in recovery. Essentially, the procedure was using one of those new fancy digital x-ray machines to find the exact location of the leakage, drawing a few vials of blood from my arm, mixing the vials, then injecting the blood directly into the hole as an internal plug. Of course, I was terrified at the concept of more needles in my spine since the first experiment hadn't gone well, but the nurses and doctors on the team were kind and patient and took care to let me know what was happening the whole time. They said the whole procedure took less than ten minutes, and then left me in a darkened room to take a nap and lie still for two or three hours while the blood clotted inside the hole.

After my nap, for the first time in a week, I sat upright without passing up. It still hurt like a motherfucker, and I had to lie right back down, but I sat up. I sat up in the wheelchair while they pushed me to the car. The doctors told me I still needed to spend as much time as possible lying down while my body produced more CSF to replenish what I'd lost. It could take a week or two, it could take six to eight weeks - no one had any idea how much I'd lost so it was impossible to tell. The next three weeks I only was upright long enough to get to the bathroom or the kitchen and back, a total of maybe 30 steps four times a day, and even that was pushing it.  There wasn't enough CSF yet to protect my brain, which was still smashing around inside my skull and bruising every time I moved. Again, I don't remember any of this. I know I spent three weeks on the sofa not getting better, but the human brain in pain is remarkable at completely ceasing creating and storing memories.

Three weeks later, I wasn't any better than I was the day after the blood patch. Dr L. recommended a second blood patch. This continued my apparently life-long trend of being a medical mystery, because the rates of requiring a second blood patch are somewhere in the neighbourhood of 1%. The team at PWHospital had never heard of anyone requiring a second procedure. But they performed it, I laid around for another multi-hour nap, and was sent home again with the same orders.

Fast forward another month-ish. I've migrated back to my own apartment as things have improved, but I'm not significantly better. I'm still totally confined to be bed. It's my last semester of graduate school and I'm supposed to be taking my comprehensive exams in a week. I haven't been to any classes in a month. I haven't studied a single bit because I wasn't able to hold up a book to read and anyway reading hurt my eyes so bad that it made me pass out. Luckily, I my grad advisor and the department head rock, and they let me take the exam from my bed. Somehow, I passed, and dragged my ass around the corner to the local pub to celebrate with some classmates - it was the first time I'd been "out" in something like six weeks. I had maybe a glass of water and a couple bits of nibbles, then decided getting up had been a gigantic mistake, and went right back to bed.

I managed to graduate on time, even making it to a couple of my lectures before the middle of May. I attended the commencement ceremony because Nana had flown all the way over for it, and because Michelle Obama was scheduled to give the commencement speech. I think she gave the speech; I don't remember. My memory was still completely shot; I knew things were happening in my life, but for whatever reason my brain simply couldn't process any of them into my memory. I guess my brain was too busy trying to not die or something to worry about anything else.

Because I'm still not really getting better. The pain is still terrible. It's beginning to change, but it's still unbearable, to say the least. The pain isn't lessened by lying down or made worse by sitting or standing or moving; it rages along at a constant level. The blacking out has largely gone away, but the pain is still making me nauseous to the point where I can't eat much. And the pain is spreading from the back of my head, right at the base of my skull, down into my neck and into my shoulders. The muscles have become so sore and painful that they're contracting into place and cannot relax, turning me into a veritable hunchback who can't move my neck, shoulders, or upper back. The whole area is tender and uber-sensitive to pressure or touch. It's been two months. Why am I not better? Why am I not feeling even a bit better after six weeks?

Ch 1: The Background

Feb., 2010

During a fairly normal day at work, I felt a migraine coming on. I'm no stranger to migraine headaches; I've had them since I was less than a year old, and after almost ten years with a neurologist, they were predictable and controllable. This migraine left me running scared - it was in a different location, the pain felt different, and it didn't respond to my medication. When a second round of medication did nothing for the pain, I gave in and phoned my neurologist's office. Because my doctor happened to be out for the day, I was passed along to another doctor in the practice. Being unfamiliar with my case, the doctor suggested that I head to an emergency room just in case - he felt that if I was concerned enough to phone in, I should probably have it looked at. Also, Snowmageddon was scheduled to hit starting that night, so I likely wouldn't be able to get to the doctor's in the morning anyway.

So off to the ER I went. I phoned my parents, knowing that they'd be an hour-ish out, but I couldn't wait for them. I checked myself in - apparently, the trick to being seen immediately is to tell them you think your head is exploding out of your skull - signed all the damned paperwork, and was seen by the first set of doctors. After listening to my spiel, they told me their standard procedure for head issues was a) a CT scan, then if nothing odd showed up on the scan, b) spinal tap. I was in so much pain that I went "yeah, okay, whatever, do the tests so you can give me some goddamned paid medications because it hurts my head to breathe." By the time they finished with the "inconclusive" CT scan, my flustered parents had arrived. The doctors briefly explained their procedures to them as I curled back into the fetal position and tried not to move. When the doctors asked for my okay to do the spinal tap, I told them to go ahead and do whatever they needed to do and get it over with and get me some pain meds for fuck's sake. Dad wasn't so thrilled about the idea of the spinal tap, but a hospital's procedure is a hospital's procedure, so he okayed it. The doctors went and got everything, moved me about a little bit, got ready,...

And SLAM. OW. The needle went directly into my spine. Not the space, not the fluid, not the discs. My actual spine. That hurts far, far more than it sounds like it does - and yes, it does sound like it hurts more than you can imagine. As it turned out, the supervising doctor let a medical student perform the procedure. Obviously, never let a medical student do anything important on you. The doctor took over and did the actual procedure quickly and painlessly, and went to submit it for test. As he left, he told me to lie as still as I possibly could for the next hour while we waited for results; not an issue, I couldn't really move much anyway.

By the time the doctor came back with the results, my migraine had finally loosened its grip on me. When the doctor said that the spinal tap also didn't come up with anything, I decided I was just done with the whole damned thing and wanted to go home and sleep for two days. They really didn't want me to go, but I do NOT do well in hospitals with IVs stuck in me, and I absolutely would not stay if two tests hadn't turned anything suspicious up. As I checked myself out, they warned me that it was likely I'd have a headache tomorrow, so take it easy, and any headache would resolve itself within 48 hours. Whatever, I already had a headache, not like I'd actually notice! My parents took me back to their place to watch over me for the next day or so. It was evening when we got home, but I went to bed without eating, because I just wanted to sleeeeeeeeeeeeep.

Fast forward to the next morning. I wake up like normal at a normal time, sit up, go to stand up, and WHAM. I black out. My head is exploding. I'm screaming but nothing is coming out. I'm falling but I'm not moving. My mom runs upstairs (my dad still dealing with his broken knee, is hobbling behind), and I'm on the floor, passed out.

An Introduction

I've been thinking about starting a blog to detail what's going on in my life, but it kept escaping me - too much to do, my condition would temporarily improve and I wouldn't see the need, too sick - but now I realise that I need to do this. The illnesses and pain happening in my life aren't common and there isn't much research on them, except what arises accidentally. Any voice that can be added to this story and this condition helps. And if my diagnoses help others find solace or lead them in the right direction, well, then maybe something positive may come from my experiences.

The short version of me: I'm Sabrina, I'm 27, and I live in North Carolina. I live with my wonderful husband Patrick, a dog (Worf), and a cat (Keenser). I have a wonderful, close-knit family and the best friends anyone could ever ask for. I have a bachelor's degree and a master's degree in subjects I love. On the surface, my life seems as normal as anyone else's. Underneath, however, I'm so ill that my life is being torn to shreds, and there's nothing anyone has been able to do about it. I've been forced onto the sidelines of my own existence, watching as friends celebrate milestones and achievements while I can barely hold on for dear life. Every time I thought I was making progress and finally on my way to health, it all fell apart again.

So, for the next few days, I'll do my best to chronicle the past few years, in terms of both the physical / mental symptoms and all the doctor's visits / tests / exams / dead ends I've gone through trying to find an answer.

That implies that I know what's wrong. I don't really. No-one does. My health - my life - have turned into a labyrinth, but the monster is forever changing form and the exit is constantly moving. I like to think that there's an end to this, but I haven't been able to see it for an awfully long time. It's hard to see much of any future when all you can see is masked by exploding stars and spirals of pain when you try to move more than turning over in bed.