Perception is reality

It's really quite perverse, living with chronic pain and having profound memory issues.  On the bad days, it often feels like it hasn't been quite this bad in a while (even if yesterday was actually quite awful), and on the good days, you begin to doubt that it was ever really all that bad, save for a few memorable incidents.  It really screws around with your self image, because you never quite feel like you can trust either your own opinions or memories.

Since I've been working with the VA to control things, I've tried to be more faithful in recording changes and statuses regularly, but it's hard to figure out exactly what to say, and when.  There's little objective value in just repeating "it really, really hurts, and makes me want to vomit", so I'm afraid that many of my entries tend to be needlessly specific and clinical, even if no one else will ever see them.  Even so, it's easier for me to believe myself when I can more clearly see the trends and spikes in depression and pain.  That helps, some, but doesn't hold for long.  It's really, really messed up to be in the middle of a horrible attack and still feel like you might be a hypochondriac.

I'm a little conflicted right now, too, about the concern the family is showing for me.  It's gotten so that nearly any time I'm in pain or look uncomfortable (she often sees me holding my head or cringing from light long before I'm consciously aware of anything more than discomfort), Eden will immediately ask me "Do you need me to take you to the ER?"

It's the right question to ask; I know she only wants to help and in turn feels the same incredibly intense need to fix things that I do when she's in pain, but at the same time, it makes me feel terribly odd, every time.  On the one hand, the VA isn't really set up to do anything but send you to the ER if you don't already have an appropriate appointment, and on the other, I sure as hell don't want to crowd the only VA emergency room in the Portland area when they routinely only have 2 doctors on duty at once.  So, again, I tell her "No, it's just a bad day.", which has absolutely been the truth recently, but the bad days have been coasting along at just below crisis level.

On the plus side, I'm still getting the occasional block of daylight hours that ends up relatively symptom-free, even if the mornings and evenings aren't doing so hot.  The nausea had even been staying away entirely for a few days in a row last week, so Eden, Cassie, and I hopped in the car on Friday and went up to Home Valley to swim, just past Stevenson, WA.  It was actually my first run there in months, even though the girls have been heading there regularly all summer, as their respective tans attest.  The length of the trip and the associated twists and turns just made it an impossibility while my stomach was even slightly twitchy, as our few aborted group attempts prior will attest.  

In this case, however, we actually had a wonderful time, something of an appropriate goodbye to the season on the autumnal equinox, and we even got to go by Granma's Gedunk and get a scoop of ice cream before they closed for the year.  The heat in the air was much less oppressive there, and it was still pretty warm in the water (I tend to get a bit shy about just jumping in when it's icey.)  My head even held long enough for me to take over driving on the way home, as Eden was just bushed.

Yesterday morning was pretty good as well; I got to accompany Eden out to see Vivian and do some housework for her, as has become a bi-Monday habit.  Again, restrictions in movement ability have kept me from doing this for months, and I missed seeing her outside of the occasional family group meal.  Very odd day, symptomatically, actually - much of the day was simply swept aside by massive waves of dizziness and nausea, fortunately waiting to start until we were already out for sushi with her.  I absolutely love pickled ginger on sushi rolls, and it helped my stomach quite a bit for the short term.

Once we got home, we got something of an explanation for the big charge, if not a reason for it.  Upon checking,my blood pressure was 30-40 below my average, starting at 57/99 at 73 bpm, and holding in that range for nearly the entire day.  Normally, I run very high, staying in the 110-120/150-160 at 100+ bpm, with spikes over the 160 line (official hypertension) when I'm in active pain.  Climbed back towards my normal range today, but still feeling pretty off.

It's far to early to make any definitive statements, but all the same, it feels like the new magnesium oxide and gabapentin combo that's supposed to help level out my symptoms over the long term is having some effect - at the least, my answers about the ER hasn't had to be "YES!" since I started taking it almost two weeks ago, and I'm still not quite up to the final level of dosage yet.  If only I could get an answer on increasing my number of pills for my rescue meds that I'm supposed to take at the onset of an attack to blunt it (currently I'm allotted 9 pills per month... and I'm having migraines twice a day, most days), I'd actually be pretty happy with the progress over the short term.  At the least, when I actually do break down and use one of the rescue meds, it does seem to help noticably, and usually within an hour or so (my last usually took about 2.5 hours to do anything, if they were going to).

We'll see how things turn out.  I did receive my results back from the IGE allergen test, and if I'm interpretting the number correctly, I'm not significantly allergic to anything they test for. (Again the double-edged sword - I don't have to give up any major food group for life, but no instant fix from it either).

This Friday is actually going to be rather interesting, or at least I think so.  I'm going in for a trans-esophageal echo-cardiogram (an ultrasound probe down my throat, so as to be able to get right up next to my heart and get a very clear picture of the structures.)  They'll be looking specifically for a malady known as PFO, or Patient Foramen Ovale.  Here's the theory on what it is and why it sounds like a perfect match, to me:  When you're in the womb, your mom's lungs are doing all of the breahting for both of you, so there's an open passage in your heart that connects the right and left halves, effectively bypassing your own system.  Normally, this closes completely before birth, and the halves are completely independent, with one half pumping deoxygenated blood from the body to the lungs, and the other pumping oxygen-rich blood back out.

If I do have PFO, it means that this passage is partially open again, and may be allowing some de-oxygenated blood to bypass the system, which accounts for so many things, in my head.  Not only is it potentially directly responsible for the migraines, but also explains the high blood pressure/bpm (more work to do the job if it's a less efficient gas exchange), the extremely volatile and unpredictable nature of my attacks, and the sudden spikes of heart pain (asphyxiation HURTS, thanks to lactic acid build up, and if the cardiac circuit that actually supplies the heart with oxygen gets a spike of oxygen poor blood, that's just what it would feel like.  The good news is that if it is PFO, it should be fixable with surgery.  This test and possible explanation actually came from one of my former advisors down at Klamath Falls, as he was actually doing a study on this very phenomenon and mentioned that I sounded like an ideal match in my interview.  If nothing else, it's a fascinating theory to me, almost beautiful in the elegance with which is would explain so much.