You know how you will recognize my skull when I am dead and gone? By my tea-stained teeth!
How I love my tea.
At least I am no longer feeling like I need an autopsy.
Not that the doctors have figured out what is wrong with me. But I am still here.
Sometimes I think I have porphyria.
And here is why. I was in the beautiful Dominican Republic in December of 2009 when the land of pain visited me and tried to subsume and conquer me in the Dominican Republic the way Columbus had tormented the indigenous people.
So while my mate slept blissfully I was locked in a hotel bathroom, the window open enough to let in the night noises but not swarms of mosquitoes, and I was doubled up in gut pain and head pain, lying on a towel on a strange floor.
And praying.
And wondering. What on earth could this be? And why? And how could there be so much suffering. I was certain this was the reason my sister and I had decided to not birth children, to ensure that no one else ever experienced this.
And here I was on Day 1 of the first out of the country trip I had taken since I was in the ER 3 times in Nov 2008 and subsequently ill for months, for all year, and I had to wonder, would I need to find a taxi and get to a hospital in another part of the island?
For all its beauty, the DR has challenges with poor sanitation, water that is unsafe to drink, and some contaminated blood in its hospitals, and so I had to consider would I try to get a taxi to take me the long length of the island to a resort with westerners who probably had better medical help?
Or should I just get back to the airport and try to get a flight out? The day before a suicide bomber had tried to blow up that plane going into Detroit and had scorched his lap and scared America deeply and so the airport was in a state of very heightened alert.
I survived the night, and the next day, though it was not easy and in the heat I was always seeking a magical coca-cola to try to fight the migraine.
But what was also on my mind was porphyria. That night locked in the bathroom and so alone I read from the NY Times magazine I had carried on the plane and there was a medical mystery column and the woman had bizarre and complicated symptoms which seemed to affect every system and yet did not show up on tests.
And what did she end up having, but porphyria.
Since I was fifteen doctors have been testing me for lupus. I have been living in the kingdom of illness for that long.
But there are respites when I live on other islands.
The illness backs off, moves away, and as strangely as it comes on, it leaves, for no real rhyme or reason I can determine.
(Though the past three years hormonal fluctuations are the source of much of my misery And this reminds me, I think plane travel is also a trigger for my migraines. Not that day, but the day after. )
So anyway, when this past December the doctor was very concerned I might have multiple sclerosis, maybe I didn’t think it was that because even though some of my symptoms overlap with those of sufferers of MS, I have been sick for so long. More than twenty five years now.
What I have is an intruder, someone or something breaks in and lays waste, wrecks the place. (Which I typo-ed as the palace.)
Home invasion.
It happens to me every month.
Every month for the past 3 years.
Longer if you count my seizures which wracked me for twenty years. But sometimes I think these migraines are just the seizures in disguise, the seizures after a costume change. Because what happened was that I finally got the seizures under control and went back to my life and finished college etc and when I got down to only a couple of seizures a year, and then basically none, these migraines popped up.
First, I just had them about two days a month and I thought they were an anomaly. They were so bad they would wake me up at night and I would think it was just a nightmare.
But finally by December of 2007 they had gotten so bad they were lasting three consecutive days and would not let me eat or sleep and I recall driving two hours to the airport with what I was still calling “The Worst Head Ache of My Life”, even though I had now had “The Worst Headache of My Life” many many times in the months before, and after I got back, I popped a handful of something like Tylenol (I don’t mean handful, I mean 3 probably, but that was after taking aspirin or advil for days) and I lay down on the bed in the darkness in all my clothes and passed out for about twenty hours.
When I awoke, the headache was gone.
Until the next month.
Because there was a gut element and because I kept taking things like advil and alleve which probably made my guts worse, I was thinking I was getting monthly food poisoning and that was making me really depressed about the food supply in America. And that wasn’t helped by the fact that every week either spinach or hamburger or peanut butter or alfalfa sprouts or tomatoes or eggs or chicken potpies or catfood being recalled due to toxicity and deaths.
So, too much sharing! I hope you don’t read this post. It is too icky. It is why I shall either abandon the blog again soon or really rail myself in so I stop with the too much sharing! I suppose I am just trying to figure things out by talking out loud.
Must shut up!
How I love my tea.
At least I am no longer feeling like I need an autopsy.
Not that the doctors have figured out what is wrong with me. But I am still here.
Sometimes I think I have porphyria.
And here is why. I was in the beautiful Dominican Republic in December of 2009 when the land of pain visited me and tried to subsume and conquer me in the Dominican Republic the way Columbus had tormented the indigenous people.
So while my mate slept blissfully I was locked in a hotel bathroom, the window open enough to let in the night noises but not swarms of mosquitoes, and I was doubled up in gut pain and head pain, lying on a towel on a strange floor.
And praying.
And wondering. What on earth could this be? And why? And how could there be so much suffering. I was certain this was the reason my sister and I had decided to not birth children, to ensure that no one else ever experienced this.
And here I was on Day 1 of the first out of the country trip I had taken since I was in the ER 3 times in Nov 2008 and subsequently ill for months, for all year, and I had to wonder, would I need to find a taxi and get to a hospital in another part of the island?
For all its beauty, the DR has challenges with poor sanitation, water that is unsafe to drink, and some contaminated blood in its hospitals, and so I had to consider would I try to get a taxi to take me the long length of the island to a resort with westerners who probably had better medical help?
Or should I just get back to the airport and try to get a flight out? The day before a suicide bomber had tried to blow up that plane going into Detroit and had scorched his lap and scared America deeply and so the airport was in a state of very heightened alert.
I survived the night, and the next day, though it was not easy and in the heat I was always seeking a magical coca-cola to try to fight the migraine.
But what was also on my mind was porphyria. That night locked in the bathroom and so alone I read from the NY Times magazine I had carried on the plane and there was a medical mystery column and the woman had bizarre and complicated symptoms which seemed to affect every system and yet did not show up on tests.
And what did she end up having, but porphyria.
Since I was fifteen doctors have been testing me for lupus. I have been living in the kingdom of illness for that long.
But there are respites when I live on other islands.
The illness backs off, moves away, and as strangely as it comes on, it leaves, for no real rhyme or reason I can determine.
(Though the past three years hormonal fluctuations are the source of much of my misery And this reminds me, I think plane travel is also a trigger for my migraines. Not that day, but the day after. )
So anyway, when this past December the doctor was very concerned I might have multiple sclerosis, maybe I didn’t think it was that because even though some of my symptoms overlap with those of sufferers of MS, I have been sick for so long. More than twenty five years now.
What I have is an intruder, someone or something breaks in and lays waste, wrecks the place. (Which I typo-ed as the palace.)
Home invasion.
It happens to me every month.
Every month for the past 3 years.
Longer if you count my seizures which wracked me for twenty years. But sometimes I think these migraines are just the seizures in disguise, the seizures after a costume change. Because what happened was that I finally got the seizures under control and went back to my life and finished college etc and when I got down to only a couple of seizures a year, and then basically none, these migraines popped up.
First, I just had them about two days a month and I thought they were an anomaly. They were so bad they would wake me up at night and I would think it was just a nightmare.
But finally by December of 2007 they had gotten so bad they were lasting three consecutive days and would not let me eat or sleep and I recall driving two hours to the airport with what I was still calling “The Worst Head Ache of My Life”, even though I had now had “The Worst Headache of My Life” many many times in the months before, and after I got back, I popped a handful of something like Tylenol (I don’t mean handful, I mean 3 probably, but that was after taking aspirin or advil for days) and I lay down on the bed in the darkness in all my clothes and passed out for about twenty hours.
When I awoke, the headache was gone.
Until the next month.
Because there was a gut element and because I kept taking things like advil and alleve which probably made my guts worse, I was thinking I was getting monthly food poisoning and that was making me really depressed about the food supply in America. And that wasn’t helped by the fact that every week either spinach or hamburger or peanut butter or alfalfa sprouts or tomatoes or eggs or chicken potpies or catfood being recalled due to toxicity and deaths.
So, too much sharing! I hope you don’t read this post. It is too icky. It is why I shall either abandon the blog again soon or really rail myself in so I stop with the too much sharing! I suppose I am just trying to figure things out by talking out loud.
Must shut up!
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