I want to believe that they are like stars
Or like a jeweled hairnet
They were what was visible on the MRI when the doctor called the day before Christmas to tell me that the results were thus far fairly decent but that they could see I was having severe migraines.
A week later in his office I ask, “Well is it that there are these bright spots and so they are causing the migraine, or are the migraines causing the bright spots?” He was clear, the migraines come first. So what then does that mean? I could see him choose his words carefully.
He did not use the words brain damage, but I feel that is essentially what he was saying, that the migraines were causing changes in my brain, that maybe these were areas experiencing less circulation, areas that were denied circulation at some point.
He did not say them but the words ‘brain damage’ were in the air. I already knew.
I had been experiencing cyclical cognitive defects since Nov 2008 but I am so much better now than I was then, that I try not to fret about it. I believe the brain can heal, that neurons can regenerate. Memories have come back, words have come back. Except during the most severe of migraines I am relatively normal in my brain right now, though it gets stressed and exhausted more easily and shuts down faster, almost like I am post concussion or something. Sometimes it hurts horribly to try to think. Sometimes I test myself by just looking around the room and trying to name all the nouns, and when I can I feel hopeful.
I ask another doctor about the results of the MRI. Does he think that these are evidence of small strokes I might have had? I ask because in late 2004 or early 2005 I experienced what I think might have been a small stroke. Three events seemed to happen simultaneously.
1. My stepfather has a heart attack and when I get the news I feel a hatchet in the left side of my chest and double over. This is bizarre to me because sure I love my stepfather but I don’t think we are that close.
2. And then my diabetic mate, with whom I am separating though we are still sharing a bed, is having massive blood sugar swings so bad that sometimes I am having to wake him up in his near coma and feed him sugar. Well one night I am awakened from a dead sleep by a bloodcurdling scream from him, right next to me, and I literally feel myself have a heart attack, and then my brain momentarily shuts down. I recover quickly and rush to help him but for months afterwards my excellent sense of direction is diminished, I have a hard time recalling things, someone tells me something and I immediately repeat my question or act as if I have not heard or retained the info, and I can tell something in my brain is just not right at all. I feel lost. I cannot make new maps.
3. Then this soon to be ex fiancé and I are almost killed when a drunk driver comes down 1-5 the wrong way, going south in the northbound lane~ as we are headed north. A miracle and my soon to be ex’s swerve save our lives, but it was so close I had already put my feet on the dashboard and curled into the fetal position. Not that this is the right thing to do, but our lives were over. Since that time I have wondered if we died and we are now in the afterlife. We were shaken to the core, but ok. There was no metal on metal. It was a miracle. But two days later my eye began to bleed, to fill up with blood. I went to the doctor who believed it was a hemorrhage that had clotted up quickly during the “accident.” It made me wonder what else happened as a result of our cars passing through each other like metal ghost ships.
So I had had some traumas. And it is right after these events I start experiencing extreme blacking out dizziness when eating.
So the doctor says with my cholesterol level (presumed to be genetic, high for decades) and the off the charts spiking blood pressure that happen when I am in pain, then it could be possible that yes, I had been having something like strokes. He doesn’t know.
So how do I get the pain under control? It roared up again last night (2-17-11). The pain would not let me lie down, it wakes me and shakes me the way people will say a shark shook them like a rag doll. The pain blasts through me and turns me to red mush.
For a few hours last night I was back at the beginning of the saga, back in Nov 2008 when it seems this began, or rather, exploded. The various kindlings seemed to be there already. Then I was started on female hormones to try to curb the severe cyclical pain and then instead of a healing my pain tops out and blows my body apart like a bomb. I recall on the way to the ER in the middle of the night we are driving by the ocean and I think that even if I could rush into the cold wintry waves with a gun and shoot myself in the head, I don’t know if this will trump the pain in my head. I have never known anything like it. And it is just the beginning. It will go on weeks and months. Morphine will not touch it.
Every day this week of Feb 2011 I was having head pain and pressure and floating bits in my eyes. A few days ago I start also having twinges and pains in my upper right abdomen. An anxiety begins to build, a foreboding. Then one night all of a sudden I have the bad head pain and am acutely sick to my guts. Hours later a knife stab pain in my upper right abdomen doubles me over. I spend the night with a heating pad and ginger tea. And I feel afraid. The voodoo is back.
So exhausting. Pain and pressure and fear.
Today I pop a blue pill. It takes my edge off. It is no cure but it makes me feel less like a time bomb. I had pain and pressure in my head all day, all month really, all the time since October. The sounds have changed but still, having sounds in one head could make one go psychiatric. Mainly its pressure and a strange sizzling liquid sound, almost like fizzing.
It’s akin to Chinese water torture to not be able to escape this.
I noticed last week I was thinking of cocktails. I didn’t drink any but I kept thinking maybe that would reduce my dizziness (but actually my dizziness is much improved since the New Year) and maybe it would make the noise more like background noise I don’t notice so much.
Never before the past few months have I thought alcohol would cure anything.
But there is something about this that wants a drink.
The noise and the pain make me anxious.
The part of me that cannot find a cure or be comforted wants a good stiff drink.
Maybe some intuitive part of me thinks I need an old fashioned blood thinner.
There is this terrible truth that I who can somewhat advocate for myself and who have health insurance and who is determined and who believes in medicine and who has sought help from scores of medical professionals in the past 28 months and who has done every test and tried many of the medicines, still has no diagnosis or comfort or cure, and this leaves me feeling very sad for myself like none of them care enough to really help me, and also so very sad for all the people who do not even have insurance or access to these doctors and hospitals or money for medicine or the doggedness of my personality type.
I would have had to declare medical bankruptcy were in not for money left to me by my grandfather and grandmother. So thank heavens for that, but what a sad way to spend an inheritance that could have helped other people or sent me on a trip around the world.
How many nights I have been up alone at 2 or 3 am, in serious pain, afraid, trying to decide what to do, which ER to head towards, feeling my bp spiked up and it making my head and heart gurgly, and it’s a vicious cycle of pain making bp go up and bp being up probably making head pain worse and round and round and round.
May the circle be broken.
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