Yesterday, or, a time when records were set, new friends were met, but no long term answers, yet...

Eden actually pointed out a simply brilliant post from a webcomic called "Hyperbole and a half", recently, which highlights the plain inadequacy of the traditional pain scale used in doctor's offices these days. Unfortunately, I had entirely too much of a valid reason to use the proposed new scale, yesterday.

As it turns out, my respite from pain was a lot briefer than I had been hoping as of last post. Migraines, chest pain, and vomiting all made intermittent appearances over the last few days, culminating in the mother of all horrible experiences yesterday. I still don't know exactly what was going on, but I woke up in absolute agony shortly after midnight, with immense pressure and a sensation of fluid shifting around in my head - every change of angle for any reason whatsoever kicked the already nearly unbearable pain into extra high gear. Being absolutely exhausted, and frankly unable to face the thought of the movement involved in getting up and finding something to take the edge off the pain (not to mention not having the slightest idea what medication would be appropriate, as this felt so different from my normal modes), I spent the next few hours drifting between lying awake and getting just far enough into sleep to have absolutely terrifying dreams - somehow sleeping while in pain always seems to be about the only thing that produces dreams that I remember, and they're always just scary as hell; perhaps my normal sleep cycle just runs right past REM on the way to deep sleep in a desperate attempt to make up the many hours of sleep I tend to miss.

In any case, one of the dream cycles I landed in was just profoundly disturbing (this among dreams of being fired from working at Costco and being trapped in an underground apartment). For some reason, I ended up in a sequence that essentially had me convinced that my little brother, a man whom I've known, loved, and respected for approximately 28 years now, was a figment of my imagination. Now, I know that this sounds odd and unbelievable, but you have to understand, my normal memory is absolutely shattered at this point, most especially the memories from my childhood and early adulthood. Often, when my thoughts turn to my first wife, Jessie, for whatever reason, it's hard to feel that those years were real, given how little of our life together that I can recall. Kind of tragic, really, and not a fact that I care for, but I use it now as a comparison, because the dream had me feeling exactly the same way, that maybe the experiences I recalled with him were really all in my head. Regardless, I woke back up, still in horrible pain, and spent the better part of an hour and a half recounting the experiences I'd shared with him, and trying to convince myself that Tim actually existed. Perhaps this will give you some idea of how tenuous my hold on reality is at times, especially when I'm hurting for sleep.

The remainder of the night flowed by in much the same way, with dreams becoming less and less logical and pain continuing to get worse. I'm afraid that by the time Eden woke up, and eventually talked me into going in to the ER (I had myself quite convinced that they wouldn't be able to help me, that they would commit me for being suicidal, and that I wouldn't survive the trip to the ER due to the movement required), I had scared her quite a bit. Normally I'm a pretty stoic fellow, as I don't see the point of crying in most cases, and really don't have access to much emotion most of the time (left overs from the military and various traumatic periods, I think). This time, however, I managed to get myself into a hell of a state, somewhere between screaming and sobbing (Scrobbing?), as crying only made the pain that much worse, and of course, once started, it was awfully hard to calm down enough to stop. Surely unfairly scary to those around me, and I'm sorry for having exposed them to such a thing.

In the end, Eden did get me to the ER, with me holding on desperately to the seat and handle the whole way, trying valiantly to minimize movement from the most miniscule of bumps, with my eyes hidden behind both sunglasses and a wet washcloth. As I told the intake nurse, my pain was holding at a 10 ("the worst pain you've ever experienced" - prior to this point anyway) without movement, and was simply making up brand new numbers with any aggravating movement, crying, or the wondrously unpleasant experience of vomiting, which I'm afraid I had to dash away for twice while waiting for a bed to open up in the ER.

Of course they threw blood tests at me, and even took a CAT scan to be sure that there weren't any suspicious blobs showing up in my head to explain the nastiness, but in the end, they weren't able to come up with an explanation, other than possibly meningitis. Given that my temperature and other stats were in a normalish range, and that my pain was eventually managed, we decided to hold off on the spinal tap required to test for that against the symptoms returning in the next few days. Of course, to get my pain under control, they ended up piping in some Dilaudid, a morphine derivative that I hadn't been introduced to previously, along with a varied witches brew of anti-inflammatories and anti-histamines in my IV. Let me tell you, that's some pretty powerful stuff - quite unpleasant waves of sensation when first given, but insofar as A. covering pain, and B. making the remaining pain unimportant, that stuff is amazing. I went from pain quite literally off the scale to perhaps a 4 or a 5 in a matter of hours. Granted, I surely would have preferred some kind of answer for why things hurt so dang much, and I'm more than a little scared that it will return, but failing that, I'll take it. They even sent home two pills of it just in case, along with a few other meds, which I'm given to understand is quite unusual for that level of narcotic. The pain hasn't returned bad enough to make me resort to it yet, thankfully.

Actually, today hasn't been half bad - I woke up with very low static pain, but extremely high photophobia this morning, and so didn't accompany the girls to the swimming hole today, but even that faded for the most part in the afternoon after a dose of the anti-inflamitories and anti-histamines that the ER gave me to hold out until I can see my new doctor.

In point of fact, I don't have a new doctor - while the VA approved me leaving my previous nurse practitioner, they've simply assigned me to another one, as I mentioned last post. Oh well; I did get set up for an intake interview with her next Tuesday, so we'll see how that goes. I still do have some hope for the results of the MRI that my neurologist ordered - it should show much more soft tissue definition than the CAT scan, and thus may show different results. I have, however, given up on the elimination diet - it seems clear that dropping the major allergen possibilities from my diet had no significant impact over the week or so I was on it, although technically I suppose I could still have some environmental factors kicking in as allergens, so I'll still be asking for a test for that kind of thing.

So yes, that's where I'm at now - quite impressively horrible over the last few days, but at least today wasn't too bad at all. As Eden said, it's awfully nice to see me smile and laugh again (and it's awfully nice to have the attention span to do so - the fact that Ed Byrne is brilliantly funny helped too - we spent the evening watching some of his standup.)

Sitrep: So Far...

Well, I've got to admit to some confusion. It's Day 6 of my new elimination diet, and, as of yesterday, I was assuming that it wasn't bearing any fruit. The weekend was actually somewhat nice - horrible pain in the morning and evening, but I did get a few waking hours off in the afternoon to actually have some time to myself (pity it couldn't have been time that Eden was home). Yesterday was agonizing; woke up in pain at 3:30 am, and the darn thing didn't quit until 6pm - I was quite afraid that I'd bounced right into another multi-day cycle. All of this could easily be part of my normal variations in cycle; when I'm in the headache every day mode, it tends to shift by a bit off of a static 24 hour cycle, scrolling earlier or later at a whim, but generally somewhat stable.

Today, however, I woke up dizzy and nauseous, but with quite minimal pain. Still within the purview of my normal variation, but it seems to be tapering off somewhat, and I don't appear to be too very photophobic.

Long story short, I don't know where I'm at, but I guess there's something to be said for lack of negative confirmation. I'll be sticking to this diet (and lusting madly after soda and normal food - it probably doesn't help that I've been spending at least a little of my "useless" time reorganizing ebooks, and that I'm now in the cooking section) for another week or so, then will evaluate whether further investigation of allergy potentials is warranted.

Secondary thought: I did get a letter to the effect that I'm confirmed for being able to drop my useless nurse practitioner from the VA. The not so great news is that they've just switched me to a different NP. While I certainly have hope that the new one is going to be more useful and professional, part of the reason I had petitioned for the change was to get to an actual doctor; my understanding of the nurse practitioner program is that they are intended largely to handle the bulk of the "normal" cases; flus, upset stomachs, and the like, while freeing up the full MDs to handle the more esoteric cases, like mine. Ah well; it would be hard to have her be worse than the last.

The new Gabapentin hasn't arrived yet, so no news on how that's working. I'll keep you folks updated when I have more news.

Best wishes to all!

Sitrep: Post-Neuro 1.0

For those that are waiting with bated breath for the outcome of my latest adventures in VA medicine, good news! Of sorts, anyway.

Turns out that the Neurologist I was assigned to, Dr. Daniel, appears to be both competent and compassionate. Long story short, he listened to what Eden and I had to say, gave comprehensive questions and answers, and seems pretty much at the top of his game. He's setting me up with a new maintenance med (preventative, rather than rescue) for migraine, Gabapentin, which is another anti-seizure med that's shown promise in migraine as well. I have a bit of trepidation about this, given how the last anti-seizure, Topirimate, went, but I at least have the strong feeling that he'll listen if things start going wrong again, and he has a backup med to try if this one is ineffective (an injectable form, but I don't recall the name off the top of my head).

In addition to this, we ran another bank of blood work yesterday, and I'm due to be set up for a full head MRI shortly to update my imaging (last was a CT scan in 2003-2004) and rule out a number of the nastier potential developments that might be causing all this, as well as mapping any possible occlusions or deformations of my sinuses, since I seem to be at least somewhet reactive to strong weather or pressure changes lately.

I'll have to follow up with him today, however, as Eden was doing her normal caretaker best to figure me out, and stumbled upon the current Wikipedia article on Cluster Headaches. Now, I've seen this term before, and it seemed to fit to some degree according to the definition that was available at the time (a very brief Mayo Clinic writeup), but there just wasn't a whole lot of information to flesh things out and I deadended on that line of research and moved on. This article, however, appears to fit my current symptoms (or at least my perception of them) to a "T", so I'm going to at least leave a voicemail to that effect for Dr. Daniel when it's a reasonable hour to see what he has to say and see if any change in our treatment plan is warranted with this specific fit.

I have to say, the colloquial nickname for this style of headache, the "suicide headache", is frighteningly apt. I must confess, it's an idea that has at least been circling the drain in my darkest hours during the last week-and-a-half long migraine, thanks in no small part to the incredibly miniscule sleep I was able to obtain for the duration. For what it's worth, this kind of thinking is WAY outside of my normal thought patterns, and was one of the neon warning signs that motivated me to get to the ER stat.

In any case, I'm chalking things up as having one more doctor on my side, and have high hopes that we'll be able to make significant progress in at least slowing or controlling my advancing symptoms. Bonus points: our food stamps finally came through from the state, so I'm also trying an elimination diet to try to rule out possible allergy triggers or agrivators. We'll see how that goes - most of yesterday was spent just being ravenous, despite Eden's wonderful salmon dinner. I'd attribute that largely to caffeine detox, personally, as well as the horrible brain-piercing night I've had. Regardless of said discomfort, it's a heck of a lot easier to take when it feels like I'm finally moving (or at least lurching) forward again.

Rude much?

There's something inherently very, very wrong with this situation. I actually had a number of days after the last set of ER visits where my pain was actually pretty darn manageable by the meds on hand. Coincidentally, most of those days occurred while I was down at the parents, trying to give Eden little time to herself to where she didn't have to spent the bulk of her effort either taking care of me or avoiding aggravating my pain with excessive light or noise. Unfortunately, things started peaking again during the ride back up to Portland, and seem to have come to a head again as of last night.

Oddly enough, during the day time yesterday, things were pretty good - I actually did perhaps 70% of the driving on the way to and from Newport (darn near unheard of, and we had a blast at the Aquarium, thanks to a Groupon we'd purchased months ago that was about to expire), and was in very good spirits the whole way; I could feel the edges of discomfort, but it was largely masked by my meds. Then as the cars started flipping on their lights at dusk, things rapidly degraded, to the point where Eden actually had to ask me to pull over and change drivers, since I had steadily been putting more and more of my brainpower on "pushing" against the pain half-consciously, and was essentially driving on full auto-pilot. I spent the bulk of last night getting up every few hours to treat the pain to get to the point where I could at least stand to lie there in the dark listening to podcasts. Of course now I'm back in the garage, hiding from the light, which is a bit annoying, as I had hoped to spend a good portion of the day utilizing the processing power of my desktop to actually catch up a bit on photos for once.

I guess that's really the theme here, for me. As painful as this all is, mentally it's more annoying than anything, for a number of reasons. I think the most prominent bit is that it completely messes with my self-identity. For the longest time I've kind of defined myself as "Smart, but not wise...", and have been able to hold a bit of pride in that definition. By this I mean that I'm clever, quick, and a good problem solver, but with my memory issues, etc, I just don't have a whole lot of past experience to draw on. Tests and such have always been easy, and people are generally impressed with me, once they have a few hours of exposure. For all of that, I have the common sense of a rock, and I've learned to deal with that, and try to react with a healthy sense of humor when it's pointed out (or I manage to point it out myself through accident or action).

That intelligence is largely gone during these attacks, or at least is effectively masked - either the pain, pressure, and dizziness occupy so much of my attention that I'm just too bloody slow to keep up, or the meds that somewhat block those symptoms make it a monumental effort to think at all, or some combination of the two, all the time. I spend a horrible amount of effort just trying to hold together to do the simplest things, and of course my time in school is hampered to say the least. It's a major portion of the reason that I'm taking this next semester off from school to hopefully get a better grip on controlling these issues, as well as the thought that the funds for that semester would be largely wasted with the amount of attention I'm currently able to bring to bear.

On the plus side, I'm down to roughly 24.5 hours until I see the Neurologist for the first time, so my spirits aren't quite as low as they might otherwise be; in point of fact, I'm really quite excited about where that might lead. For the moment, however, I'm just vexed that my time for useful and intelligent discourse with my wife, and for possibly getting out to see friends for a while, has been curtailed again. Ah well, I guess we'll see what the morrow has to bring.

- J

Where we're at...

It's been a very long time since I've updated this blog, but I haven't forgotten about it.

Unfortunately, the last several months have continued the ongoing trend of headaches and associated symptoms getting worse. I intend to do at least a couple of summary posts for the intervening time, once the photos are done processing, so this is more of a catch up for folks that have been asking after me, as there have been many since I slipped under the radar.

In a way, those photos are something of an accurate barometer for how things have been going - I've been shooting fairly regularly, or at least was up until a month or so ago, because I've found photography to be an immersive distraction in addition to all of the other charms of the hobby - often I'll take the current regimen of pills for a migraine spike and head out to find something to shoot while waiting for them to kick in - at the least, the perception of the time between taking the pills and noticing that I'm getting some relief shortens, even if the actual time doesn't. Contrary-wise, processing those photos later on isn't quite as distracting, and the dizziness and nausea that have become pervasive have severely curtailed how long I'm able to sit upright at the desktop, to the point where I've got a backlog of slightly more than 3 months of photos to work through. I've actually just gotten to the point of copying everything back to a portable drive so that I can work on them on the netbook, which is horribly slow, processing-wise, but I'm at least back to making some progress. I've just finished geotagging all of them (digitally marking the location where the pictures were taken), and that took a day and half all by itself.

In any case, there have been a couple of mis-steps and frustrations along the way. It turns out that the initial dose that my nurse practitioner prescribed me as a rescue medication (to be taken at the onset of an attack to stop development) for my migraine was laughably low due to mis-typing - I'm currently getting intermittent mediocre relief at four times that dose. The first anti-depressant that the VA started me on (Amitriptyline) wasn't terribly effective for either the migraines, nor the depression, so we moved on to a different anti-depressant (Venlafaxine). On the plus side, that seems to be working very well for depression, although it leaves me with a rather strange disconnected feeling, as my emotions don't match up with my logic right now; I can consciously see that I should be far more upset and concerned for my situation than I actually am - it's a truly perverse feeling.

Unfortunately, swapping anti-depressants meant that I needed a new daily maintenance medication to try to stave off migraines from even starting. My nurse practitioner selected Topirimate for this, which is an anti-seizure medicine that's been shown to have some positive effects in migraine patients as well. Not so much for me. A few days after I started taking it, my symptoms went through the roof, especially the nausea and dizziness, to the point where I couldn't keep my pills down for more than 20 minutes each day, and I lost nearly 10% of my body mass in a little over a month (I'm currently at 213.6 lbs as compared to 237.0 lbs when I started the medication) due to simply not being able to obtain enough calories (trust me, I wasn't losing weight to exercise!) On top of all that, I also was hyper-prone to motion sickness for the duration - Eden, Cassie, and Nick decided to take me out to the Gorge to try and relax a bit and get out of the house for a while, but we ended up having to pull over every five minutes the whole way there and back. That theme repeated of course every time I left the house, which rapidly became only the occasions when I had an appointment at the VA, and I'm afraid a few of those sessions were cut short by me having to run to the bathroom to regurgitate.

I alerted my NP (I'm going to go to using this as a contraction, since I don't want to name names here and have to defend truth vs. libel) to these changes, of course, and her solution was to have me take a suppository for nausea as soon as I felt the symptoms, without any investigation into why I was having them. Great theory, I guess, except that even those take about 45 minutes to kick in, and didn't do much more than make it impossible to stand up, and I usually only managed to keep my normal pills in me for 10-15 minutes - not enough to absorb much at all.

I should stop here for a second and mention that I've been "seeing" my NP for nearly 7 months now, and have only spoken to her for perhaps 45 minutes total since that time, most of which were during my intake interview. Trying to get ahold of her usually means calling the clinic's front desk, waiting an hour or two, then getting a call back from her assistant, Carol. I'd then pass on my symptoms to her, which would invariably lead to a message being passed back some hours later that my NP would consult with some other doctor and get back to me; rarely have I heard back from her after that point without further follow ups.

Basically, I'm left feeling like I'm left dealing with a secretary's assistant - she doesn't know what she's doing (the NP, not her assistant - Carol is fabulous), can't make a decision on her own, isn't responsive to my requests for more diagnostics (so far all I've had was some initial bloodwork and a urinalysis) or direct referrals to a specialist, rarely follows up, and on top of all that, I'm playing the old kindergarten game of telephone, where my messages have to get passed through multiple people on the way to the people making decisions about me, and are undoubtedly getting muddled along the way. Case in point: the Topirimate - minimal research on the web indicates that approximately 16% (nearly 1/6th) of patients react to it the with the same unbelievable nausea and dizziness. Now, to be clear, I'm not blaming the NP for not knowing that I would be reactive in this way - I'm blaming her for not knowing that this reaction was a high likelihood. Seriously, if you're going to be messing with another person's body in any way, be familiar with your tools!

I stopped taking the Topirimate almost three weeks ago, and the nausea has calmed down significantly (save for a nasty two day span after accidentally ingesting one more dose - apparently I missed removing one of the pills from my week-long pillbox). Right now I'm really only getting severe nausea that directly correlates with the timing of the more severe pain spikes, so I'm thinking it's just a direct reaction to the level of the pain. Now the funny thing is, I passed messages to my NP via several routes (including through my psychiatrist, psychologist, and an ER doc) to alert her to this and still haven't gotten a response back, beyond the very quick conversation I had with Carol last week prior to an ER visit, when she inquired as to how the medication was working for me, and was very surprised that I wasn't still taking them. I forget the other portions of her response, but "just because you send messages to her doesn't mean she reads them" is a direct quote. Unacceptable.

Enough about the NP for now - we'll get back to that subject, but lets continue chronologically for the time being. As I said, intensity and duration have continued to climb, and the onset has become much more abrupt, to the point that I very rarely drive any more, even during the few times that I feel ok enough to do so, just because I don't really feel safe about it. The few times that I've had to drive by myself invariably lead to additional hours of pain, just from having to push myself hard to hold together.

Back on June 24th, I finally got so fed up with the whole mess that I may have gone a little nuts, in retrospect. It's always been passed around that exercise keeps you healthier, so I decided to just grit my teeth and go out for a bike ride regardless of pain. Didn't work so well - I was hurting pretty good after only a mile or so, and at that point it became a three-way tug of war between pain, willpower, and the pain-blunting endorphins from pushing hard. I'm not exactly sure, at this point, why I decided to keep on going, other than the fact that a one mile ride isn't much to brag about, even if you're only bragging to yourself. In the end, I landed on Pat's doorstep after a pretty twisty route, biking roughly 23.2 miles (as charted by Google maps) when I hadn't biked at all in at least two years. Surprisingly, I didn't feel that bad at all during the next few days (other than semi-normal migraines - no ache or strain of muscles).

On June 28th, however, things were not so good. I'd just gotten home from picking up Cassie at work (one of my rare driving days), when an abrupt, burning, stabbing pain blossomed in the middle of my chest, and rapidly grew to an absolutely agonizing level. I had no idea what was going on, but both Eden and I were a bit worried about a possible heart issue, so I tried to be responsible and just threw on my blood pressure cuff to make sure that things looked right. Of course the numbers were pretty high, so I laid down, and waited out 15 more excruciating minutes before checking again - higher still (in retrospect, almost definitely in response to the pain). Eden and Cassie threw me in the car and we ran like a bat out of hell for the Vancouver VA facility as I tried to call ahead. Unfortunately, the VA phone system had no way for me to connect with the ER department, nor did it indicate that there wasn't an ER department at any other local branch besides the downtown Portland one, so we didn't find out that the Vancouver facility wouldn't do us any good until we actually arrived there.

Having struck out and with me still being in massive amounts of pain, Eden and Cassie made the snap decision to take me to the Southwest Washington ER, where the staff were very friendly, competent, and helpful. At this point, I was getting tingly in the extremities and nasty nauseous and dizzy. End result: no perceptible cardiac event, with the secondary symptoms likely being psycho-somatic. Operating theory is that I strained something during my bike ride on Friday and somehow massively aggravated that. Add that to my very first panic attack (or at least that's what the doctors are labeling it), and you've got a recipe for fun. In any case, I was seen, processed, and discharged in only about 2.5 hours - easily one of the shorter times I've ever been in the hospital, either for myself or others. On the plus side, I was attended by the absolute hottest male doctor and hottest male nurse ever, so the girls had some eye candy to keep them amused. Seriously - hot enough to make me consider switching teams... Bonus points: The initial mental and physical exams for my disability claim were the following day, so I'm guessing my stats were more than a little off.

On that Friday, July 1st, the same horrible chest pain came back, so I called in to my NP to see what I could do. Two hours later, her assistant called to direct me to the VA ER in Portland. End result again: nothing, although I did have an incredibly rapid and curious sensation of relief when they took a half dozen vials of blood out of me for testing - I actually asked the doc what they had given me (since I was being interviewed for history and symptoms, I wasn't really paying attention to the phlebotomist) and was incredibly surprised to learn that they hadn't given me a thing. I'm thinking that maybe this is a blood pressure thing, but who knows, since again, I've got no follow up whatsoever from my NP, even though I'm now up to a bit more than a dozen instances lasting between 5 minutes to an hour or so each. If it was a strain thing (from folding clothes that day) or another panic attack (which I don't think it was; the first yes, but all of the others haven't had the tingling and blurry vision, etc), many of those instances have happened where I'm literally just sitting down in a chair or lying on the bed, so I don't know what might have triggered the recurrence.

The remainder of July was fairly sedentary - mostly just working the Topirimate out of my system, figuring out how to survive without any income, and working on pushing my disability case forward. We've applied for food stamps (so much for pride, but whatever), but are still waiting on the department to process our application (every darn time I call or go down in person they say it'll only be another 24-48 hours). Oh well, it'll come through eventually. Part of the disability claim has been gathering affidavits from people that have been around me to attest to the progress of my condition, since my medical coverage (and thus medical records) in the time since I've left the Navy have been spotty at best. If you're interested enough to have read this far down in what's becoming a massive post, you might be inclined to read through them, as my friends and family seem to be more articulate than I about exactly how my condition is affecting me. Honestly, part of my frustration at this point comes from the people that I don't get a chance to see that often, who somehow manage to miss the worst of it and seem more prone to encourage me to just ignore it and get on with my life. Believe me folks, I would if I could. My immediate family did catch a glimpse of it back at Christmas of last year during our final days in Minnesota and during the trip back, but that level has become the new baseline pain, now. Here are are links to scans of the affidavits (with personal info redacted), including my own.

Josh Abe Cassie Dorian Eden1 Eden2 Josh Jon Louis Nichole Suzanne Walter

Right now I've been getting a migraine literally every day for at least 8-12 hours, which is not good, as it seems like my body is getting less and less responsive to the medications, or the symptoms are getting worse (hard to tell which). I did get nearly a day and a half "off" during our annual camping trip with friends at the end of July, but at this point "off" is coming to mean that the migraines are actually fairly well covered by medication, rather that actually not having one, and that was only a day and a half out of a four day trip. Still, I had most of the Topirimate out of my system at that point, so I was able to deal with the ride down to Timothy Lake fairly comfortably with the aid of some Dramamine, and camping itself was a blast (first camping trip of the year so far, when Eden and I habitually camp all summer - darn those missing finances...)

On the 15th of August I started one of my favorite instances ever - the unbroken migraine. I tend to only get multi-day migraines every two or three months, and usually I'm able to get help in breaking them with a shot of Toradol. I assumed that it would be a relatively simple matter to get a shot from my clinic at the same time as I went in to see my psychologist (who will be moving on to another site soon - dangit!), so I called in as soon as it was light, after 56 hours of unbroken pain. Now, I should point out that Toradol is not a controlled substance, has no perceptible effects other than migraine relief and a very nasty burning sensation at the injection site, so this shouldn't have been a big deal.

Come to find out, the clinic can't give a shot (and might not even have it - they weren't sure) without my primary physician's approval (the NP, again). In this case, she had actually read the note, apparently, but in turn simply added a line to my case notes indicating that she would talk to me about getting the shot during the next scheduled phone session in late September. Keep in mind, I've been wavering between an 8 and a 9 on the 10 point pain scale for more than two days already, and A. she wants me to wait more than a month for relief, B. she doesn't even respond directly to me, nor in any other way than updating her notes with a single sentence.

Fortunately, while my psychiatrist couldn't prescribe the Toradol, she could send me on my way back to the ER, and even called ahead to let them know that I was coming (man I love her). Four and a half hours later, I had the Toradol in me, and the pain was at least a little dimmed (down to a 5 or 6), so I was discharged.

Unfortunately, even that level of relief didn't last more than 8 hours or so. Since it still wasn't broken, or even really perceptibly diminished, I caught a ride back to the ER with the girls as they went to set up for market on Sunday morning. I was beginning to get fairly scared, as was the rest of the family, as all of my secondary symptoms of dizziness, nausea, aura, and sensitivity to light were all off of the charts for the duration. I'd basically been spending the last couple of days just lying in the dark on a couple of sleeping bags in the garage, as that is the location with the best light seal in the house. The pain and lack of sleep (other than 20 minute spans of ultra vivid apocalypse scenes) for days on end were really not helping my thought processes; I kept on noticing that I was thinking some very out of character utterly despondent thoughts. Not good.

No help at all from the Toradol cocktail this time - pain wasn't even perceptibly diminished, but they still discharged me after adding a Phenergan shot in the other cheek, apparently hoping that they'd eventually kick in. On top of this, there's something epically screwed up about getting bitched out by the ER doc for ending up back in the ER for migraine instead of getting to a Neurologist and getting your head fixed when you've already requested to change your primary provider precisely because she won't refer you to someone with competence and can't seem to muster up a single erg of caring or competence of her own. I've gotten as far as having the request acknowledged by letter; my understanding at this point is that the next step will be at least a phone interview with her superior sometime soon.

Since the migraine was _still_ unbroken, I was directed to follow up with my primary care provider on Monday, which I did, first thing. 2 hours later, I get a call back from Carol, relaying that my NP has said "there's nothing more that we can do for you" and that I should go back to the ER. I don't have adequate words for how frustrated that made me feel, since the ER had used that exact same phrase the night before. Not the best choice, I think, to be using with someone who can't seem to keep from vomiting up his antidepressants, among other things. I'm just sayin.

All that aside, however, Monday's ER visit was actually fruitful, as the doc added an anti-histamine to the Toradol mix (along with a couple of other things - I don't recall the names of all of them, but I do know there were 5 different medicines in there). I actually managed to sleep for an hour or so while in the ER, which is a new thing for me.

Since then, I seem to have gone back to my normal daily migraine cycle, or actually a bit lower on the pain, thanks to the additional pills the ER doc gave me to continue the regimen for a while. Still getting some nasty spikes, but I'm actually getting 4-5 hours of sleep a night and I'm able to focus well enough to get a few things done (like this post, which I've been meaning to do for months). Frankly, it's a little scary that my current levels of sleep and pain feel absolutely luxurious in comparison to how I've been, even though I was at this same level only a few months before. There aren't many of those pills left, but I think I'll be able to make them last nearly until my appointment with the Neurologist on Thursday (the ER doc made the referral, since my NP wouldn't).

Really all I'm hoping for is to be able to work with the specialist to try and figure out the basic cause of all of this (anatomically - I know that my toxin exposure is almost definitely the initial cause for this, but what I'm looking for is what that exposure changed about my body that is resulting in this pain). Specifically, I'd like to get some imaging done to make sure that there aren't any unknown growths going on (since others who have been exposed have developed cancers, among other things), and a comprehensive allergy test, to make sure that I haven't been sensitized to something common in my food or environment (I haven't been able to locate any food triggers other than artificial sweeteners on my own, and I'm religious about dodging those). I also wouldn't mind whatever examination would be appropriate for determining if my sinuses are screwed up, since I seem to be reactive to pressure differentials, such as severe weather.

Bottom line, if I had a handle on what's going on, I'd be a whole lot better immediately - I don't feel like I have control over my own life, or even really have a life, now. Not good for a control freak such as myself. Tremendous amounts of my depression revolve around the thought that this will remain a mystery and simply keep on getting worse and worse until my head simply pops.

Contrarywise, if either our food stamps were issued or the initial disability decision was made, I could at least take those stressors off of my plate - 0 income and being functionally unemployable isn't working for us.

Right now, I'm staying with my parents in Philomath for the next few days to give my loving wife and eternal caregiver, Eden, a bit of time off, as I've been unavoidably needy for the duration, and to allow her to have a place to live with light for a while.

So yeah - that's what I'm up to. More later.

- J

Spare thoughts -
This whole trek has given me a lot of excuses to figure out what works for me when migraines hit - if you suffer from migraines, nausea, or light sensitivity, or know someone that does, take a look at these utilities and products:
For your PC, "DimScreen" will allow you to dim your screen programatically, in addition to the brightness level of your graphics card - this means that you can make things extremely dim by using both controls. A note, however - the percentage indicated by this utility is how much it will decrease brightness by; IE 0% is full brightness and 90% is 10% as bright as full brightness.
For your iphone or ipad, "Dimmer" will allow you to dim the screen much further than the normal brightness control. This does have to be on a jailbroken device, however, as the utility comes through Cydia.
For your belly, I find "Tripple Ginger Snaps" and "Ginger Chews" from Trader Joes, as well as "Ginger-Os" and "Organic Ginger Mints" from Newman's Own are simply wonderful for settling your stomach, and functionally far superior to the candied ginger you can get pretty much anywhere.

March 2011 wrap up

March started in much the same vein as February ended, as the nearly continuous migraine I'd had at the end of the month continued. Unfortunately, this meant that I wasn't able to do much when the girls attended a show for some of Eden's artwork, held by our friend Sara at the Launch Pad gallery - I pretty much just ran down there after class, and Eden sent me home after taking one look at me. Can't blame her at all for that, as I was quite out of sorts, but I had been hoping to be more effective in lending a hand. I ended up spending the day at home, marginally functional, but still getting some things done - mostly just starting to scan some of the older photos that my mother had recently helped me find, though I'm afraid that I didn't make too very much of a dent in the task.

On the plus side, I did get a bit of a break on the 5th, as the pain finally broke, and the queasiness that I'd been wading through toned down to the point that I actually felt like getting out of the house on my own. I took advantage of the time by heading up to the Ridgefield wildlife refuge just a few miles north of us, which definitely helped bolster my already pleasant mood.


My head went back to being a bit iffy the following day, but remained close enough to functional to prompt me to at least take a walk in the woods near our house, while Eden and Cassie headed out for the annual Portland Yarn Crawl. In the end, we both had a lot of fun, although I'm afraid I was forced back inside after only an hour or so.

Monday, the 7th, was a big ticket day - my intake appointment for the VA finally arrived. Eden and I actually spent a bit more than 2 hours at the new East Clinic, clocking in at about 45 minutes apiece of face time with a nurse and then the nurse practitioner assigned to me, running through a boatload of interview questions to try to determine exactly what I've been experiencing and what's been tried. Nothing resembling definite answers yet, of course, but at least we got things started, and I had a huge batch of tests ordered.

The 8th was another big landmark, though for a different reason, as it marked our second anniversary. The gods saw fit to be relatively kind to me on this occasion, and kept my symptoms within a relatively manageable range, although there was enough moisture in the air that Eden's arthritis symptoms we acting up and making her feel not so very good. We ended up heading through Cannon Beach, Manzanita, and Nehalem, then went back north to Oswald West, with me driving the whole way! It may not sound like much, and admittedly I was popping ibuprofen and ginger candy the whole way, but this was the first trip that we'd taken in at least 6 months where I was able to drive the entire time, instead of being forced to tap out and have Eden drive. According to Eden, that felt like a great anniversary present all by itself. Even with various symptoms, we had a really great time, and met a few wonderfully dynamic dogs along the way. We finished up the evening back in Cannon Beach, taking in a tasty dinner at Mo's, then heading home just after sunset.


The 9th was another surprisingly productive day. I woke up relatively early, and decided to head back to the Vancouver branch of the VA to get various bloodwork done, since I hadn't eaten in the last 12 hours. Surprise, surprise, they wanted a urinalysis as well, so I ended up having to stick around an extra couple of hours. The topic of disability had come up in talking with the local family at a number of points (I think I'm going to have to separate out some thoughts on the subject in a separate post, and so won't go into it here), so I decided to head over and see about getting an idea of where I stand. It turns out that the Jinkampo incinerator that was being operated not half a mile from where Jessie and I lived on base was putting out some really bad stuff, including dioxins similar to those found in Agent Orange, and there may be some connection between it and my increasingly bad health - according to some of the groups that have formed to pursue the matter legally, I'm not doing as bad as some, but who knows what's down the road? In the end, I actually started the process of filing a claim for disability investigation through the local VFW - don't know if it'll go anywhere, but we'll see.

The test results from that trip were actually fairly interesting - apparently I'm low on potassium and vitamin D, high on triglycerides but ok on cholesterol, and my white blood cell count is abnormally low. I got a whole list of foods to beef up in my diet, but they're pretty much all my favorite foods already. Makes me wonder if the problem doesn't have more to do with processing/utilizing the stuff than not getting enough. I guess we'll see in a few months if there's a change.

Mom and Dad were in town again on the 11th, so Eden and I met them at the airport Red Robin to visit and catch up. They've been flitting around lately like crazy, it seems, travelling through Hawaii, Mexico, and Minnesota in a matter of months. It's strange - seems like I never quite know where to find them from day to day, simply because I can't seem to keep up with their plans!

Saturday the 12th was time for our A&P lab final for the term. I actually felt pretty well prepared for the event, thanks to Professor Christie's excellent teaching skills and handy, if ridiculous, mnemonic rhymes. Unfortunately, it was another bad, bad migraine day, and I spent most of the time just trying to hold together long enough to get through it. Not the best mindset to score well, as I suspected and later confirmed - final score for lab was a mid-range 'B' - good, but not good enough.

Migraines continued to be nasty throughout the weekend, and I spent a fair portion of the time just cowering in the dark, but my head finally cleared for a bit on Monday evening, leading to a short session of playing around with some of Eden's jewelry, a macro lens, and a couple of flashes. I'll need to make the set up a bit more stable for next time, but I'm fairly pleased with the results.

Unfortunately, the clear head didn't last at all. Eden and I went up to Seattle on Thursday, and I'm afraid that she ended up doing most of the driving. The spike hit home while we were locked up in downtown traffic, which really sucked, as I had to spend 20 minutes trying desperately to hold together until I could get somewhere to pull over and change drivers. Usually I have a few minutes while it's changing from drivable discomfort to get away from traffic, but this time, not so much. We were up to check out the PIMA radiology program, which is a private school associated with Apolo college. As it turns out, not a good fit for me ($40,000 tuition, not accredited, and just a persistent tone that they were much more interested in the cash I could give them than actually conveying an education... oh, and only 30 out of 900 applicants per term would be selected, most of which statistically come out of their own Medical Assisting program, which I read to mean "People who have already shown they're willing to pay through the nose for a certificate that won't land them a job'.) While the intro session was a frustrating waste of effort for me, Eden did get a chance to check out a half dozen of Seattle's knitting shops while we were there, and she had a great time doing so. We're planning to make a day trip of it towards summertime with Cassiein tow.

I ended up taking my lecture final on the 18th with yet another horrible headache. I actually didn't score that badly, ending with a 90.8% for that test (and making a nice progression with the previous two midterms at 88 and 89% each, respectively), but of course that wasn't enough to lift my final grade out of the 'B' range. Pity, but not entirely unexpected, I'm afraid. Honestly, while I feel like I'm actually learning quite a bit from retaking A&P at PCC from the different perspective and emphasis between the two schools (of the two, I think PCC is actually tougher and more interesting - as a for instance, OIT only spent a few weeks of the first term on histology, whereas PCC works it in throughout), I almost feel like I'm treading water with respect to making progress in improving my application chances - I've bumped up my chemistry and medical terminology grades, which'll help, but A&P hasn't moved a bit so far, and I don't hold a lot of hope for making an 'A' in the last term either. On the plus side, we started pet sitting for Jake, Teddy, and Rikki again that evening, so at least I had some furry friends to console me.

The next few days were a bit of a muddle, as I stayed rather horribly dizzy and nauseous, with occasional spikes of pain throughout. It seems that the recent "supermoon" helped all the ladies at market synch up their cycles, and Eden's PCOS helped make the time extra miserable. In the end, I spent most of the time at Vicki and Kari's trapped without a vehicle (which I wouldn't have been up to driving anyway), and Eden spent most of the time huddled up in our king size bed with our cats comforting her.

By the 23rd, we were both absolutely fed up with cabin fever, and said damn the consequences. Off to the gorge for a brief escape from respective houses, and a tiny bit of time together. We ended up visiting the site of the original Multnomah Lodge, which burned down decades before, but the chimney still stands. Somehow, not many people know about the site, but it's very pretty, and even has it's own route to Mist falls if you're willing to hike nearly vertically.

On Friday I headed back to the VA to meet with the psychiatrist that had been assigned to meet with me, since the VA would now take over the management of my ADHD meds and wanted to verify the original evaluation. I have to say, I was really quite shocked and impressed by Dr. Blumner - I'm afraid that my experiences with Jessie have left me terribly angry at their profession as a whole, since I think a lot of the issues that led to her death resulted from her psychiatrist functionally just throwing pills at her problems without any associated therapy. There's not a whole lot in specific that I want to share about our session, but I must have spent at least an hour and a half with her for what was supposed to just be a quick intake interview, and spent an annoyingly large portion of that time actually crying. I think that, more than anything, brought home just how depressed I've been over these past few months - regardless of the fact that it was a safe environment in which to do so, I simply lost control of my emotions for a while - it's not something I am comfortable with, as a rule. And of course, while we did eventually decide to try an anti-depressant (one which often is issued as a treatment for migraine, so maybe we'll get lucky and get help with both issues, there) and a different ADHD med, she's also set me up with a therapist to try to make things more survivable while I get my health back under control. So yeah, bonus points to her for coming off as a completely trustworthy ally when working with an overly skeptical patient.

The next few days lapsed back into the pattern of me at Vicki and Kari's and Eden in Vancouver, as migraine issues persisted and Eden developed a relatively short sinus/fever bug. I ended up hiking a couple of miles to the Max to get back up to Vancouver at the end of it, just to try to save her a trip, which didn't work out so well for my netbook, yet again - somehow the backpack opened up while I was in the middle of the street and the poor thing hit the deck relatively hard. It seems like ever since I've been working towards getting out of the computer field, technology just doesn't care that much for me. No problems with the hard drive this time, since it was powered down, but there were some issues with a jammed power button that took me a while to figure out and fix. In any case, Eden, bless her heart, wanted to come down to the house to help me clean it before we locked up to turn it back over the Vicki and Kari, but ended up feeling so awful by the time we got there that she ended up having to turn right back around and run for home. Still, it was a noble thought, since she had spent barely any time at the house and still wanted to help clean.

Not too much to report about the remainder of the month, except that adapting to the new meds has left me rather vulnerable to stress - it seems like it takes barely any excitement to tip me over into agony, as an incident with Piranha getting sick in the middle of trying to help Cassie beat a deadline proved. It's kind of a weird change - seems like the headaches are coming on a bit less on their own, but are almost vindictive about striking when there's an excuse to raise my blood pressure. Unfortunately, every one of the meds I've just changed to lists dizziness as a side effect, and the doctors want me to shift away from a few of my normal coping methods, like the energy drink caffiene bombs, so it's been a bit rough. Hopefully it'll be the beginning of a transition back to normal, though.

March 2011 Roundup

March 2011 Roundup [Show images on map] [Fullscreen slideshow]

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