Finally. Thank Whatever god or spirit you'd like.

On the 27th, Patrick again decided to call the surgeon's office to talk with Inga about why on god's green earth the surgery centre was dragging it's arse and failing to phone surgeons back with schedules. I didn't even think Ducic's office would be open, as it was two days past christmas; I thought they'd be out until after New Years. Surprisingly, staff answered the phone and connected Pat to Melanie, the medical secretary and contact, and even more surprisingly, the surgery centre had phoned back. Apparently, Inga had spent a significant amount of time giving the centre immense amounts of shit. She even tried negotiating for a better date, but she did well more than fantastic for us.

January 8. Wednesday. Next Wednesday. Less than a week out now. She really tried hard and lobbied for Jan 2 or 6. No luck there, so I'll totally take the 8th. I'm not even scared or worried. I don't think anyone has ever wanted surgery so badly, except probably other neuralgia patients quite literally begging for their lives.

And it's not a day too soon. I spent another few hours in hospital this morning because I simply could not bear the pain. It did take Patrick, Alex, and Dad pestering before Pat simply came home from work and told me that he was taking me and that was it. I'm glad he did. I feel as poorly now as I did in the immediate aftermath of the LP. It started Sunday evening and has been getting progressively worse and worse and worse since then. My brain was exploding and being compressed by my skull.

The best analogy I have for this is Bruce Banner v. Hulk. My secret is that I'm always in pain, but for the most part, I can manage it so some extent. Well, starting Sunday, Bruce began losing all control to the pain, and by Tuesday, the Hulk had completely taken over. Bruce didn't 'exist' anymore. It took some severe, intense medications to make Hulk go asleep for a bit and let Bruce come out for a bit.

Luckily, since we had a date to give the ER doctor, he took pity on me and wrote a script for some serious narcotic painkillers to tide me through til Wednesday. I don't quite know how I'm going to make it back home tomorrow with me Dad. I'm certain over-doing it with car rides and people and stuff and family and travel within a short week-long period set this super-bout off. I'll have to take some serious Benadryl so I can pass the fuck out on the drive home (so will Worf, so he doesn't puke in the car on the way home).

It's going to be a really, really shitty next week. But for the first time in so, so long, I have something to look forward to - relief.

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?