In my last post, I wrote of how change brings about learning. Well, here's a case in point: If not for this surgery, I would never have appreciated all that the abdominal muscles do.
Is there any activity they are not involved in? From the pain and discomfort I'm feeling at every move, it sure doesn't seem so.
Bending, pushing, pulling, lifting, carrying, twisting, turning. reaching, steering, walking, sitting, standing, lying down, getting up, coughing, sneezing. All involve the abdominals. Even laughing, hence, the term "belly laugh."
Saturday, January 31, 2009
Nothing Wholly Good or Wholly Bad
Nothing is completely good or bad. This isn't a new concept. Certainly Buddhism has taught this for many, many centuries. It's just that this truth has been made clear to me in so many ways lately.
First off, on the way to London, I read a book about the Black Plague. "What good could come out of something that wiped out a third of Europe?" you might wonder. Well, actually some surprisingly good things resulted:
* Because the plague created a labor shortage, serfs were in a better position to bargain with landowners and thereby improved their living conditions.
* A higher percentage of men died than did women. (Wait now, that's not the good part! I'm getting to it.) Since there were fewer male heirs, women were able to inherit property. Some women became quite wealthy in the process and were known as dowagers.
* Some smart and lucky peasants were able to buy land cheaply that had either been abandoned by families decimated by the plague or that had to be sold quickly to pay mounting debts. Such upward mobility created a fledgling middle class.
* Jews, who were in many areas of plague-ridden Europe accused of poisoning wells and thereby "creating" the plague, were persecuted and killed. (No, once again, this is not the good part!) They fled these regions for Poland, whose king welcomed them. There they established a vibrant culture.
* The modern-day descendants of those who contracted the plague but survived do not develop AIDS upon exposure to the HIV virus.
So, if something as horrific as the Black Plague can result in all those positive occurrences, certainly good can result from the way my life is turning.
In the eyes of the world, and certainly in the eyes of nay-sayers and pessimists, the good does not outweigh the bad. But this is narrow thinking. If life is about change, growth, and learning, then those forces that promote change, growth, and learning are those that are beneficial. And there's nothing like hardship to shake things up, force one to mature, and jumpstart learning.
Besides, so far, the whole dialysis thing--which actually won't start for another three or four weeks--has already brought about some good:
* Aaron and I have had some heart-to-heart talks about the possibility of my death and how hard it is on him to see me, year after year, getting worse, with occasional blips of improvement, followed by crashes.
* I have learned who are my true friends, as many have not contacted me, not responded to my emails or calls. Others have been quick to offer prayers, support, and kind words.
* My ex-mother-in-law, who for most of the time I've known her, somehow never thought I was good enough, always let me know that whatever I did was wrong, is now very kind to me. She has taken care of some of my mother's remaining possessions in Wisconsin, and she and I have had very pleasant phone conversations. This turn is beautiful to see.
* And once I finally leave Cal State, something I absolutely will do at the end of this semester, will be a positive move. I just know that in my bones. Cal State has treated me so shabbily for so many years. It will be such a relief to be free of that place. And dialysis is pushing that leave-taking to the forefront.
I'm sure other good things will come of this. Of course, I hope it goes without saying that this is most definitely not the path I would have preferred. I would much prefer to be completely healthy, in a wonderful relationship, living in a stunningly beautiful place, seeing my creative ventures come to life and make me a good living, traveling the world, having a vibrant circle of friends who are nearby and accessible, and living with a loving dog, and, of course, maintaining my joyous connection with my son.
But my life is changing. And with change comes growth and learning. I have moved into the final stage of Kuebler Ross's grieving process--acceptance. I accept what is to come. What other choice really does one have? Complaining gets you nowhere, so why go there?
First off, on the way to London, I read a book about the Black Plague. "What good could come out of something that wiped out a third of Europe?" you might wonder. Well, actually some surprisingly good things resulted:
* Because the plague created a labor shortage, serfs were in a better position to bargain with landowners and thereby improved their living conditions.
* A higher percentage of men died than did women. (Wait now, that's not the good part! I'm getting to it.) Since there were fewer male heirs, women were able to inherit property. Some women became quite wealthy in the process and were known as dowagers.
* Some smart and lucky peasants were able to buy land cheaply that had either been abandoned by families decimated by the plague or that had to be sold quickly to pay mounting debts. Such upward mobility created a fledgling middle class.
* Jews, who were in many areas of plague-ridden Europe accused of poisoning wells and thereby "creating" the plague, were persecuted and killed. (No, once again, this is not the good part!) They fled these regions for Poland, whose king welcomed them. There they established a vibrant culture.
* The modern-day descendants of those who contracted the plague but survived do not develop AIDS upon exposure to the HIV virus.
So, if something as horrific as the Black Plague can result in all those positive occurrences, certainly good can result from the way my life is turning.
In the eyes of the world, and certainly in the eyes of nay-sayers and pessimists, the good does not outweigh the bad. But this is narrow thinking. If life is about change, growth, and learning, then those forces that promote change, growth, and learning are those that are beneficial. And there's nothing like hardship to shake things up, force one to mature, and jumpstart learning.
Besides, so far, the whole dialysis thing--which actually won't start for another three or four weeks--has already brought about some good:
* Aaron and I have had some heart-to-heart talks about the possibility of my death and how hard it is on him to see me, year after year, getting worse, with occasional blips of improvement, followed by crashes.
* I have learned who are my true friends, as many have not contacted me, not responded to my emails or calls. Others have been quick to offer prayers, support, and kind words.
* My ex-mother-in-law, who for most of the time I've known her, somehow never thought I was good enough, always let me know that whatever I did was wrong, is now very kind to me. She has taken care of some of my mother's remaining possessions in Wisconsin, and she and I have had very pleasant phone conversations. This turn is beautiful to see.
* And once I finally leave Cal State, something I absolutely will do at the end of this semester, will be a positive move. I just know that in my bones. Cal State has treated me so shabbily for so many years. It will be such a relief to be free of that place. And dialysis is pushing that leave-taking to the forefront.
I'm sure other good things will come of this. Of course, I hope it goes without saying that this is most definitely not the path I would have preferred. I would much prefer to be completely healthy, in a wonderful relationship, living in a stunningly beautiful place, seeing my creative ventures come to life and make me a good living, traveling the world, having a vibrant circle of friends who are nearby and accessible, and living with a loving dog, and, of course, maintaining my joyous connection with my son.
But my life is changing. And with change comes growth and learning. I have moved into the final stage of Kuebler Ross's grieving process--acceptance. I accept what is to come. What other choice really does one have? Complaining gets you nowhere, so why go there?
Trading One Malady for Another
Last night I slept the best I've slept for as long as I can remember. What a blessing! I've had a lot of really rough nights--shortness of breath, chest pain, diaphragm pain. Well, there was none of that last night. Hallelujah!
I then made an observation: Often one malady has been traded for another.
During my early childhood, for example, I had severe asthma. As soon as I was diagnosed with diabetes at age 13, the asthma disappeared.
More recently, the chest pain I have felt almost 24/7 for many years has subsided and some days I don't feel it at all. It's replacement: discomfort, aching, and stabbing pain in my diaphragm.
And the nasal congestion that has made lying prone and breathing, especially at night, very difficult for the past two months suddenly disappeared. A nurse said he was adding antibiotics to my IV yesterday. That must have been some powerful stuff because it knocked those little buggers right out of my system. Thank you, thank you, thank you for that! But of course the trade-off for that blessing is a catheter in my abdomen.
Perhaps the lesson is that nothing is wholly good or bad. There is the hint of a dark cloud in a sunny day. And always a silver lining around a cloud.
I then made an observation: Often one malady has been traded for another.
During my early childhood, for example, I had severe asthma. As soon as I was diagnosed with diabetes at age 13, the asthma disappeared.
More recently, the chest pain I have felt almost 24/7 for many years has subsided and some days I don't feel it at all. It's replacement: discomfort, aching, and stabbing pain in my diaphragm.
And the nasal congestion that has made lying prone and breathing, especially at night, very difficult for the past two months suddenly disappeared. A nurse said he was adding antibiotics to my IV yesterday. That must have been some powerful stuff because it knocked those little buggers right out of my system. Thank you, thank you, thank you for that! But of course the trade-off for that blessing is a catheter in my abdomen.
Perhaps the lesson is that nothing is wholly good or bad. There is the hint of a dark cloud in a sunny day. And always a silver lining around a cloud.
General Anesthesia Has Greatly Improved Since I Had my Tonsils Removed
Boy, has general anesthesia made some leaps and bounds in the last 44 years! I was expecting the same sort of scary experience I'd had when my tonsils were removed when I was six years old.
I remember so clearly how I saw the doctors surrounded me in the operating room, I seemed to be seeing them through viscous water. They told me to count backwards, and I began falling in a spiral down a long, dark tunnel. Creepy!
Well, that isn't how it happens today. I was wheeled into the pre-op room, and something must have been put into my IV. I fell asleep without any of the foreplay that usually accompanies sleep--no strange, dissociate thoughts and images, no feeling of drifting. No, it was simply lights out.
I awoke two and a half hours later, wondering when we were going to get this show on the road. Then my right hand rested on my abdomen, and I felt the catheter. The operation was over!
I had no recollection of being wheeled into surgery. I never saw the operating room or the surgeon or the surgical nurses. I had no sensation of the tube being put down my throat (though currently I have a sore throat). And to really confuse me, they put me back in the same bed slot in the pre-op room, which also must be the post-op room.
When people have an alien abduction is must be something like this. You go to sleep in one spot, you have a bunch of missing time and evidence that something was done to you, and then you're dropped back into your normal life.
I'm certainly NOT complaining, as this was a vastly better experience than the tonsil one. It's just that it was totally unexpected.
I remember so clearly how I saw the doctors surrounded me in the operating room, I seemed to be seeing them through viscous water. They told me to count backwards, and I began falling in a spiral down a long, dark tunnel. Creepy!
Well, that isn't how it happens today. I was wheeled into the pre-op room, and something must have been put into my IV. I fell asleep without any of the foreplay that usually accompanies sleep--no strange, dissociate thoughts and images, no feeling of drifting. No, it was simply lights out.
I awoke two and a half hours later, wondering when we were going to get this show on the road. Then my right hand rested on my abdomen, and I felt the catheter. The operation was over!
I had no recollection of being wheeled into surgery. I never saw the operating room or the surgeon or the surgical nurses. I had no sensation of the tube being put down my throat (though currently I have a sore throat). And to really confuse me, they put me back in the same bed slot in the pre-op room, which also must be the post-op room.
When people have an alien abduction is must be something like this. You go to sleep in one spot, you have a bunch of missing time and evidence that something was done to you, and then you're dropped back into your normal life.
I'm certainly NOT complaining, as this was a vastly better experience than the tonsil one. It's just that it was totally unexpected.
No Loose-Fitting Clothes--What to Do?
The night before surgery, I looked long and hard at the clothes hanging in my closet. My surgery instructions recommended that I wear loose-fitting, comfortable clothes that would not rub against the bandaging. That was a tall order as all I have are clothes that actually fit nicely about my trim frame. Suits, dresses, blouses, pants--none of them loose.
The only thing I could come up with were black scrubs. I had once worked as a massage therapist at a day spa that required workers to wear only maroon or black scrubs. After I quit, I began using them as PJs.
When Aaron saw my outfit, he quipped, "Is that how you're going to make your escape?"
He's so quick and so funny. "I don't know if that will work," I said. "The doctors wear light blue, and the nurses generally wear ones with goofy prints. Besides, when is the last time you saw a slim nurse?"
The only thing I could come up with were black scrubs. I had once worked as a massage therapist at a day spa that required workers to wear only maroon or black scrubs. After I quit, I began using them as PJs.
When Aaron saw my outfit, he quipped, "Is that how you're going to make your escape?"
He's so quick and so funny. "I don't know if that will work," I said. "The doctors wear light blue, and the nurses generally wear ones with goofy prints. Besides, when is the last time you saw a slim nurse?"
Looking Cute is so Damn Important
The dear son took me to the hospital yesterday. A few friends had volunteered, but when I found out that I had to be there by 5:45, I figured only a next of kin would be truly willing.
I'm so glad he was there. He held my hand and told me that he was always thinking good thoughts about me, praying for me. He told he loved me and that he hoped that the surgery would go well, that dialysis would help me feel better.
Best of all, he was there when they put in the IV. Oh, how I hate IVs! That is one of the prime reasons why I didn't opt for hemodialysis.
At one point, I gathered up my IV pole and headed for the bathroom. When I returned I engaged in the silly banter that is part of the mother-son bond I share with Aaron. I smiled and told him, "You know, Son, I just looked in the mirror, and I want to tell you that your mom is pretty damn cute. Even without makeup, even stressed out and feeling lousy, even without sleep the night before surgery, I still look pretty cute....And that's important!"
I'm so glad he was there. He held my hand and told me that he was always thinking good thoughts about me, praying for me. He told he loved me and that he hoped that the surgery would go well, that dialysis would help me feel better.
Best of all, he was there when they put in the IV. Oh, how I hate IVs! That is one of the prime reasons why I didn't opt for hemodialysis.
At one point, I gathered up my IV pole and headed for the bathroom. When I returned I engaged in the silly banter that is part of the mother-son bond I share with Aaron. I smiled and told him, "You know, Son, I just looked in the mirror, and I want to tell you that your mom is pretty damn cute. Even without makeup, even stressed out and feeling lousy, even without sleep the night before surgery, I still look pretty cute....And that's important!"
My Hysterical Mom
Last week I took my mom out for lunch twice. I knew I wouldn't be up to seeing her after surgery and I figured this would make up for her time alone. Instead, she pestered me about why I wouldn't be able to see her. So I did what I have promised myself not to do so many, many times in my life: I told her crucial information about my life. As always, this was a bad idea.
I said it as simply and evasively as possible: "I'm having surgery on Friday, so I won't be able to see you for a while. I'm not sure how long." What a huge mistake! I should have lied, told her I had so much work, that I'd be working nights and weekends too. But, no, I had to tell her the truth! I've never been comfortable with lies. This would have been an excellent time to perfect that skill.
These few words set off days of hysteria. I exaggerate not. Hysteria. Like a heroin addict who needs his fix. Like a psychopath on a murder spree. Hysteria.
My mother began calling 10, 12 times a day, always whining. Always saying something crazy like, "Call me back! I need to talk to you!" Or: "I'm waiting, I'm waiting for your call!" Other even more insistent, more incomprehensible stuff. Always at a frenetic pitch. She called my land line, my cell phone. She called Aaron multiple times at work. Worst of all, she called 10 times in the middle of the night before my surgery. Calls at 1:30 a.m., 1:35 a.m., 2 a.m., on and on like that, all night long. We didn't answer any of them, knowing who was making them.
And just hours before this barrage, I had talked to her, told her in no uncertain terms that I was so incredibly sorry I had said anything to her, that this had been such a stupid mistake on my part.
I could never stand her theatrics, but in the state I was in, with all that is going on and then to have a hysterical, needy, self-absorbed mother on top of it, I said, "Mom, if you were really concerned about me, you would be calm and supportive, not hysterical. Instead of aiding my health, you are working to destroy my health. Besides, you are not concerned about me. You're concerned about yourself. If I die, you wonder who will take care of you. It's about you, Mom."
And after being so clear about how she is stressing me out, what does she do? She calls 10 times in the middle of the night to make sure that I don't sleep a wink before my 5:45 a.m. surgery.
I said it as simply and evasively as possible: "I'm having surgery on Friday, so I won't be able to see you for a while. I'm not sure how long." What a huge mistake! I should have lied, told her I had so much work, that I'd be working nights and weekends too. But, no, I had to tell her the truth! I've never been comfortable with lies. This would have been an excellent time to perfect that skill.
These few words set off days of hysteria. I exaggerate not. Hysteria. Like a heroin addict who needs his fix. Like a psychopath on a murder spree. Hysteria.
My mother began calling 10, 12 times a day, always whining. Always saying something crazy like, "Call me back! I need to talk to you!" Or: "I'm waiting, I'm waiting for your call!" Other even more insistent, more incomprehensible stuff. Always at a frenetic pitch. She called my land line, my cell phone. She called Aaron multiple times at work. Worst of all, she called 10 times in the middle of the night before my surgery. Calls at 1:30 a.m., 1:35 a.m., 2 a.m., on and on like that, all night long. We didn't answer any of them, knowing who was making them.
And just hours before this barrage, I had talked to her, told her in no uncertain terms that I was so incredibly sorry I had said anything to her, that this had been such a stupid mistake on my part.
I could never stand her theatrics, but in the state I was in, with all that is going on and then to have a hysterical, needy, self-absorbed mother on top of it, I said, "Mom, if you were really concerned about me, you would be calm and supportive, not hysterical. Instead of aiding my health, you are working to destroy my health. Besides, you are not concerned about me. You're concerned about yourself. If I die, you wonder who will take care of you. It's about you, Mom."
And after being so clear about how she is stressing me out, what does she do? She calls 10 times in the middle of the night to make sure that I don't sleep a wink before my 5:45 a.m. surgery.
Thursday, January 29, 2009
Do People See Me as a Freak?
Just as I was feeling OK about the whole dialysis thing, a friend's boyfriend said that I must feel funny at work, that my co-workers must think of me as some kind of freak. And wouldn't it be better if I just removed myself from that situation and quit work, went out on disability? "I'm sure you'd rather not have them always looking at you like you're a freak," he said.
I think that, in some twisted way, he meant to offer support through his comments. The thing was I hadn't been thinking of myself as a freak, and I hadn't considered that others looked at me that way--that is, until he said this.
But maybe they do. Maybe already in their minds they have relegated me to the almost-dead category. That I am no longer worth bothering with because they think I won't be around much longer and, even if I am, do they really want to associate with someone who has to add and remove fluids from her body four times a day through a tube permanently implanted in her abdomen?
Of course, everyone adds and removes fluids from the body many times each day. But somehow doing it quick and easy over a toilet is different.
Who knows what people think. If the truth be told, I'm sure that there are plenty of people who have thought I'm a freak even without knowing anything about my medical challenges.
But I do know what I will do the next time Daryl or anyone else brings up freakiness: I'll tell him straight on that, that's not the way I think about myself.
I think that, in some twisted way, he meant to offer support through his comments. The thing was I hadn't been thinking of myself as a freak, and I hadn't considered that others looked at me that way--that is, until he said this.
But maybe they do. Maybe already in their minds they have relegated me to the almost-dead category. That I am no longer worth bothering with because they think I won't be around much longer and, even if I am, do they really want to associate with someone who has to add and remove fluids from her body four times a day through a tube permanently implanted in her abdomen?
Of course, everyone adds and removes fluids from the body many times each day. But somehow doing it quick and easy over a toilet is different.
Who knows what people think. If the truth be told, I'm sure that there are plenty of people who have thought I'm a freak even without knowing anything about my medical challenges.
But I do know what I will do the next time Daryl or anyone else brings up freakiness: I'll tell him straight on that, that's not the way I think about myself.
At This Time Tomorrow
At this time tomorrow I will have already completed surgery. I'll probably be in the recovery room by 9 a.m.
Although the heavy-duty emotions regarding dialysis have subsided--I'm no longer crying about it or waking up in the morning with my very first thought being dialysis--I still find the prospect of having a permanent catheter in my belly a bit daunting. It's as if I had been told that tomorrow I will die, even though today I'm walking about, enjoying the sunshine, acting as if tomorrow is such a long ways off.
I guess it just doesn't quite seem real yet.
I'm not looking forward to being under general anesthesia either. Only once before did I experience this--as a 6-year-old, when I had my tonsils removed. I remember so clearly the sensation of falling down a dark tunnel, not at all what I feel when I naturally drop off to sleep. I also remember the drawing I colored just before surgery--a multi-colored spiral. And I recall all the popsicles I was given afterwards.
Perhaps this time I'll have a more pleasant experience. Perhaps Archangel Michael and his minions will appear, as they did on April 1, 2000, on the other side of my back fence, in all their heavenly glory. Michael stood front and center, and around him and to a vanishing point behind him stretched God only knows how many glowing beings, the uncountable ones at the archangel's command. He was a bad-ass dude, someone you would not want to cross, someone you would want by your side, as your protector. I could see how he might draw a line in the sand with his sword and say to the devil, "This far and no farther." Not at all like the effeminate angels that are usually portrayed in art. (The image posted here is the closest I could find to how the archangel appeared to me, but even this image is a bit swishy, especially in the softness of the face.)
With dark skin or maybe just a great tan and bedecked like a gladiator without the helmet, Archangel Michael looked at me straight on, peered into my eyes and into my soul, and said, "The strength that you see within me is there inside of you." I sure could use that kind of pep talk again.
Although the heavy-duty emotions regarding dialysis have subsided--I'm no longer crying about it or waking up in the morning with my very first thought being dialysis--I still find the prospect of having a permanent catheter in my belly a bit daunting. It's as if I had been told that tomorrow I will die, even though today I'm walking about, enjoying the sunshine, acting as if tomorrow is such a long ways off.
I guess it just doesn't quite seem real yet.
I'm not looking forward to being under general anesthesia either. Only once before did I experience this--as a 6-year-old, when I had my tonsils removed. I remember so clearly the sensation of falling down a dark tunnel, not at all what I feel when I naturally drop off to sleep. I also remember the drawing I colored just before surgery--a multi-colored spiral. And I recall all the popsicles I was given afterwards.
Perhaps this time I'll have a more pleasant experience. Perhaps Archangel Michael and his minions will appear, as they did on April 1, 2000, on the other side of my back fence, in all their heavenly glory. Michael stood front and center, and around him and to a vanishing point behind him stretched God only knows how many glowing beings, the uncountable ones at the archangel's command. He was a bad-ass dude, someone you would not want to cross, someone you would want by your side, as your protector. I could see how he might draw a line in the sand with his sword and say to the devil, "This far and no farther." Not at all like the effeminate angels that are usually portrayed in art. (The image posted here is the closest I could find to how the archangel appeared to me, but even this image is a bit swishy, especially in the softness of the face.)
With dark skin or maybe just a great tan and bedecked like a gladiator without the helmet, Archangel Michael looked at me straight on, peered into my eyes and into my soul, and said, "The strength that you see within me is there inside of you." I sure could use that kind of pep talk again.
Tuesday, January 27, 2009
Feeling Lousy and Wondering What to Do About It
I continue to feel lousy. Not that I haven't felt lousy for a long, long time. Almost a decade. It's just that it gets more and more difficult to put on a strong front.
Through continuous chest pain, which I have experienced since 1999 or thereabouts, I have generally projected a positive, everything-is-fine outlook. Now with fatigue, shortness of breath, nausea, and constant pain in my entire mid-section, especially over my kidneys, it is getting harder and harder to smile and carry on as if nothing's wrong.
Today while teaching class, I was out of breath. Just from walking about the room and writing things on the board. And all this is prior to surgery!
When the surgeon asked me yesterday if I needed a note for my employer, I told him that I planned to return to work the Monday following surgery--three days afterwards. He said that most people take the entire month off. He then said something like, "There's nothing like surgery to help you understand your limitations."
I have always pushed myself, never wanting to take the easy way out, as most Americans these days are wont to do. But I just don't know how all this is going to shake up. I mean, I've only taught two class sessions--one yesterday, one today--and I'm already exhausted, ready for the semester to end. But the end is not until the end of May! Can I really muddle through?
Through continuous chest pain, which I have experienced since 1999 or thereabouts, I have generally projected a positive, everything-is-fine outlook. Now with fatigue, shortness of breath, nausea, and constant pain in my entire mid-section, especially over my kidneys, it is getting harder and harder to smile and carry on as if nothing's wrong.
Today while teaching class, I was out of breath. Just from walking about the room and writing things on the board. And all this is prior to surgery!
When the surgeon asked me yesterday if I needed a note for my employer, I told him that I planned to return to work the Monday following surgery--three days afterwards. He said that most people take the entire month off. He then said something like, "There's nothing like surgery to help you understand your limitations."
I have always pushed myself, never wanting to take the easy way out, as most Americans these days are wont to do. But I just don't know how all this is going to shake up. I mean, I've only taught two class sessions--one yesterday, one today--and I'm already exhausted, ready for the semester to end. But the end is not until the end of May! Can I really muddle through?
Sunday, January 25, 2009
What I Want to Say to the Surgeon
Tomorrow morning at 8:30 I have the pre-op appointment with the surgeon. This is what I'd like to say to him:
"Please take a good look at my cute, little belly. It's a beautiful belly. No folds of fat. No rippling cellulite. It's such a pretty, little belly. Please look at it. See how pretty it is.
"I'm asking you to go easy on it. Mangle it as little as possible. When you're done, I need to be able to look at it and say, 'Yes, some day a man will want to touch my belly, will want to rub it and say how pretty it is.'
"You need to give me some hope, some hope for the possibility, however remote, that I won't be a freak. Can you do that? Can you do that for me, please?"
*****************
I just took some digital photos of my belly, and they aren't as cute as the real thing, so I'm not going to post them.
"Please take a good look at my cute, little belly. It's a beautiful belly. No folds of fat. No rippling cellulite. It's such a pretty, little belly. Please look at it. See how pretty it is.
"I'm asking you to go easy on it. Mangle it as little as possible. When you're done, I need to be able to look at it and say, 'Yes, some day a man will want to touch my belly, will want to rub it and say how pretty it is.'
"You need to give me some hope, some hope for the possibility, however remote, that I won't be a freak. Can you do that? Can you do that for me, please?"
*****************
I just took some digital photos of my belly, and they aren't as cute as the real thing, so I'm not going to post them.
Make the Pain Go Away
I have been in pain for months. I have told the acupuncturist, the cardiologist, the nephrologist, and probably a few others about this many times. What I've basically been told is that this is the way that it is.
Sometimes it's a dull ache. Sometimes it's discomfort. Sometimes it's like knives going into my belly. Generally I say nothing and go about my business as if nothing is wrong. I smile. I make conversation. I laugh. I engage in polite conversation. Those who know the health challenges I'm facing tell me how good I look, as was the case yesterday with Susie. Or a few days ago with Tom and Daryl. Or a few weeks ago with Rachel and Matt. But I'm feeling lousy.
Today I woke up in pain, and the pain persisted all day without a let-up. It's going on 11 at night, and I've rubbed my entire mid-section with tiger balm, hoping for some relief. I sure wish it would come so that I could sleep. I have a big day ahead of me tomorrow.
Sometimes it's a dull ache. Sometimes it's discomfort. Sometimes it's like knives going into my belly. Generally I say nothing and go about my business as if nothing is wrong. I smile. I make conversation. I laugh. I engage in polite conversation. Those who know the health challenges I'm facing tell me how good I look, as was the case yesterday with Susie. Or a few days ago with Tom and Daryl. Or a few weeks ago with Rachel and Matt. But I'm feeling lousy.
Today I woke up in pain, and the pain persisted all day without a let-up. It's going on 11 at night, and I've rubbed my entire mid-section with tiger balm, hoping for some relief. I sure wish it would come so that I could sleep. I have a big day ahead of me tomorrow.
Tuesday, January 20, 2009
One of my Hopes for the New Administration
During the past eight years of the Bush administration, I have attended approximately 15 peace demonstrations and candlelight vigils for peace. During one of my first demonstations--long before we entered Iraq--I received a poster from one of the many people who hand out free posters with sticks at such events. After several moves, I no longer have the poster.
I was disturbed by the race to war against Afghanistan and, later, Iraq. I was also disturbed by our deteriorating civil liberties. I wanted to show where I stood on both counts, and so I displayed my poster in the front window of my apartment.
"War is not the answer" seemed to-the-point but also, at least to my thinking, noncontroversial. Plus, it featured the peace sign, a universal symbol of nonviolence. I had seen many more forceful messages displayed at the rallies I'd attended, messages that I felt were not in keeping with a stance of peace, but were rather derisive and too in-your-face.
And yet soon after I had placed the poster in my window, I had to call Triple A to jumpstart my van. The tow truck driver, an African-American man in his 50s, wondered if that is the message I should be sending at this time. He seemed to agree with my sentiments, but felt that I could get into trouble for expressing them.
Sure enough, a few days later, two Long Beach police officers showed up at my door. They asked if they could come in, but, thinking quick, I said that it was a nice day, that we could talk on my front porch. They asked if this were my place. Interpreting the question as, "Do you own this place?" I answered, "No."
"But you just came out the door," one of the officers said. "Yes, I live here, but I don't own the place," I clarified.
They hemmed and hawed a bit, then asked me if that were my poster. I answered that it was. Finally I asked, "Is there a problem, officers?" They reluctantly said, "No." I then asked if I were free to go. "Yes," one answered.
I walked to my van across the street and sat in it for a good 10 minutes. All that while, the officers sat in their patrol car. Finally when they left, I left too.
And so I come to one of my hopes for the new administration: that exercising one's First Amendment freedoms will no longer be a crime, will no longer put one on a subversives list, will no longer result in police intimidation. In a broader sense, I hope that the Constitution will be restored, that "free speech zones" will be a thing of the past, that the entire country will once again be a free speech zone.
Obama is off to a good start in that direction, as he will be closing Guantanamo Bay, something that I have spoken out against on many occasion and have called my senators, representatives, and president on many, many occasions. If we cannot keep people from torture, then all the talk in our Constitution about civil liberties is all wasted ink.
I was disturbed by the race to war against Afghanistan and, later, Iraq. I was also disturbed by our deteriorating civil liberties. I wanted to show where I stood on both counts, and so I displayed my poster in the front window of my apartment.
"War is not the answer" seemed to-the-point but also, at least to my thinking, noncontroversial. Plus, it featured the peace sign, a universal symbol of nonviolence. I had seen many more forceful messages displayed at the rallies I'd attended, messages that I felt were not in keeping with a stance of peace, but were rather derisive and too in-your-face.
And yet soon after I had placed the poster in my window, I had to call Triple A to jumpstart my van. The tow truck driver, an African-American man in his 50s, wondered if that is the message I should be sending at this time. He seemed to agree with my sentiments, but felt that I could get into trouble for expressing them.
Sure enough, a few days later, two Long Beach police officers showed up at my door. They asked if they could come in, but, thinking quick, I said that it was a nice day, that we could talk on my front porch. They asked if this were my place. Interpreting the question as, "Do you own this place?" I answered, "No."
"But you just came out the door," one of the officers said. "Yes, I live here, but I don't own the place," I clarified.
They hemmed and hawed a bit, then asked me if that were my poster. I answered that it was. Finally I asked, "Is there a problem, officers?" They reluctantly said, "No." I then asked if I were free to go. "Yes," one answered.
I walked to my van across the street and sat in it for a good 10 minutes. All that while, the officers sat in their patrol car. Finally when they left, I left too.
And so I come to one of my hopes for the new administration: that exercising one's First Amendment freedoms will no longer be a crime, will no longer put one on a subversives list, will no longer result in police intimidation. In a broader sense, I hope that the Constitution will be restored, that "free speech zones" will be a thing of the past, that the entire country will once again be a free speech zone.
Obama is off to a good start in that direction, as he will be closing Guantanamo Bay, something that I have spoken out against on many occasion and have called my senators, representatives, and president on many, many occasions. If we cannot keep people from torture, then all the talk in our Constitution about civil liberties is all wasted ink.
Sunday, January 18, 2009
Tears for my Cute, Little Belly
Last night I wept over my belly, remembering the last time a man had touched it.
Ken, whom I've known for almost 30 years, was in town around Christmas. I had not seen him for almost a decade. I made lunch for us at my apartment, and later we laid down. There was such an ease to being with him, something so familiar, the kinship of two beings dropped on a strange planet at birth. The sweetest moments during that time with him were those in which he rubbed my belly, telling me how much he loved doing this. (I had completely removed my insulin pump, so not even the infusion site got in the way.) This was by far the most tender thing a man has done with me for many, many years.
In less than two weeks, a catheter and tubing will be emerging from my belly. I wept, thinking, "What man will want to rub my belly then?" Actually, even if I found a man who was interested in doing so, half my cute, little belly will be taken up by this apparatus.
Ken and I made plans for me to visit him in Tucson during my spring break. Now that I will be on dialysis, I don't know if this will be possible. Plus, I have to get up the nerve to tell him. I hadn't even gotten up the nerve to tell him about the insulin pump, much less about the catheter and tubing.
It seems a bit cruel that after nine years sans Mike--my last and truly my only boyfriend--that I should finally make such a tender connection with a man, and now it will be over after a single encounter.
I expressed these fears to Aaron, who said that every relationship has to face challenges, and that if Ken cares about me, he'll want to work through this with me. Aaron is such a sweet guy, seeing things from his vantage point, of how he would negotiate the world if he were in Ken's position.
But the truth is that Ken thinks of me as one would a sunset or a mountain range, something beautiful and amazing, but not in need of any fussing. He called the morning after I saw him in December, but I have heard nothing from him since. He probably thinks, "We made plans for her visit in March. She'll be here then."
This is such a far cry from what I want in a relationship, but still it is so much more than anything I have had in the last 10, 12 years.
Perhaps in my dreams, a man will tenderly, lovingly, stroke my belly. I just hope I can recall such a dream upon waking.
**************
After I wrote the above, I left my apartment and was gone all afternoon. Upon returning home, I found two messages from Ken. He had left one on my cell and one on my land line just minutes after I had posted the above.
I told him about dialysis and about the insulin pump. He said that he will always want to rub my tummy, as much of it as I will allow him to rub. This is exactly what I needed to hear!
Ken, whom I've known for almost 30 years, was in town around Christmas. I had not seen him for almost a decade. I made lunch for us at my apartment, and later we laid down. There was such an ease to being with him, something so familiar, the kinship of two beings dropped on a strange planet at birth. The sweetest moments during that time with him were those in which he rubbed my belly, telling me how much he loved doing this. (I had completely removed my insulin pump, so not even the infusion site got in the way.) This was by far the most tender thing a man has done with me for many, many years.
In less than two weeks, a catheter and tubing will be emerging from my belly. I wept, thinking, "What man will want to rub my belly then?" Actually, even if I found a man who was interested in doing so, half my cute, little belly will be taken up by this apparatus.
Ken and I made plans for me to visit him in Tucson during my spring break. Now that I will be on dialysis, I don't know if this will be possible. Plus, I have to get up the nerve to tell him. I hadn't even gotten up the nerve to tell him about the insulin pump, much less about the catheter and tubing.
It seems a bit cruel that after nine years sans Mike--my last and truly my only boyfriend--that I should finally make such a tender connection with a man, and now it will be over after a single encounter.
I expressed these fears to Aaron, who said that every relationship has to face challenges, and that if Ken cares about me, he'll want to work through this with me. Aaron is such a sweet guy, seeing things from his vantage point, of how he would negotiate the world if he were in Ken's position.
But the truth is that Ken thinks of me as one would a sunset or a mountain range, something beautiful and amazing, but not in need of any fussing. He called the morning after I saw him in December, but I have heard nothing from him since. He probably thinks, "We made plans for her visit in March. She'll be here then."
This is such a far cry from what I want in a relationship, but still it is so much more than anything I have had in the last 10, 12 years.
Perhaps in my dreams, a man will tenderly, lovingly, stroke my belly. I just hope I can recall such a dream upon waking.
**************
After I wrote the above, I left my apartment and was gone all afternoon. Upon returning home, I found two messages from Ken. He had left one on my cell and one on my land line just minutes after I had posted the above.
I told him about dialysis and about the insulin pump. He said that he will always want to rub my tummy, as much of it as I will allow him to rub. This is exactly what I needed to hear!
Saturday, January 17, 2009
More Kudos for Socialized Medicine
I went into the emergency room at St. Mary's Hospital in central London at 8 p.m. on Sunday. The British health care system has a mandate that no more than four hours can pass between the time a patient enters ER and is treated. And so the disparities between the American system and socialized medicine were revealed.
During my two-day stay at St. Mary's, I was continually impressed by the level of care I received. First off, everyone from the ER staff to the ward nurses to the team of doctors assigned to my case seemed to be genuinely enjoying being there. Everyone was happy, even playful. I attribute this to a different focus, not profits and cost controls as in the American system, but doing whatever is in the best interest of the patient. As the cheery Dr. Joe Lewis (he told me his mother did not name him after the fighter) said, "I don't even think about those things. I am just interested in giving the patient the best care." What a concept! And surely health practitioners who are focused on the reason they entered the profession--maintaining and restoring health--are going to be much happier than their American colleagues who are under the gun to reduce costs.
Because I am a kidney patient with complicating factors--diabetes, heart disease--I was given special care. Not only did an in-house team of a half dozen doctors monitor my case, but two nephrologists from a nearby kidney-specific hospital oversaw my care and made visits.
I was given a private room in the oncology ward because it was the last bed that was available in the hospital. This was the quietest, most relaxing experience I have ever had in a hospital--by far!
On the wall was a notice that oncology patients could receive complimentary reiki, acupuncture, massage, and reflexology. This is due to Prince Charles, who made a push to combine conventional medicine with alternative, or complimentary, practices. We are so far behind as far as that goes in the States!
Lastly--and this is a big one for me--the place was clean. Every corner appeared to be disinfected and dirt-free. The cleaning lady spent 20 minutes or more each day cleaning my room. Yes, the building itself was old, perhaps 100 years old or more. There were dings at every corner and even large gouges in the walls. But the place was clean. Women were not allowed to wear dangly earrings, and no one could wear a wrist watch--thereby denying germs a place to attach. This was so wonderful to see, as I have had such awful hospital experiences in the States--blood and feces and pills and syringes on the floor. Yikes!
So now I have been in the hospital in three socialist countries--China, Canada, and the UK. All have been much more positive experiences than I have ever had in the United States. I don't understand why socialized medicine gets such a bad rap, as I have had only positive experiences.
Thursday, January 15, 2009
I Need to See an Actor!
On Sunday night, I couldn't take it anymore. I was exhausted and nauseous, having difficulty breathing and walking.
I told the front desk clerk at the hotel, "I need to see a doctor." As happened several times during our London trip, the clerk heard something other than what I had said. She replied, "Yes, ma'am, what kind of theater are you interested in?" Thinking that perhaps the city is divided into buroughs known as theaters, I said, "Yes, I need to see a doctor. How do I go about doing that? I'm interested in whatever is closest." Again she said something about theaters. Finally I was clued in and said "doctor" very slowly.
How eccentric to say, "I need to see an actor!" Well, I suppose if one really needed to see an actor, London would be the place to do it.
I told the front desk clerk at the hotel, "I need to see a doctor." As happened several times during our London trip, the clerk heard something other than what I had said. She replied, "Yes, ma'am, what kind of theater are you interested in?" Thinking that perhaps the city is divided into buroughs known as theaters, I said, "Yes, I need to see a doctor. How do I go about doing that? I'm interested in whatever is closest." Again she said something about theaters. Finally I was clued in and said "doctor" very slowly.
How eccentric to say, "I need to see an actor!" Well, I suppose if one really needed to see an actor, London would be the place to do it.
Sunday, January 11, 2009
If I Were Home, I'd Head for the Hospital
If I were home, I'd head for the hospital. Very difficult for me to walk. The discomfort and tightness in my abdomen have progressed to pain. Even at rest, I feel the pain, and my breathing is labored. Getting up stairs and walking to and from the tube station are arduous. Aaron is patient with me, even when I have to make frequent stops.
Went to the British Museum this morning. Much more remarkable than I had ever imagined. The plunders of the empire! The Greek antiquities at the Getty are such a pale comparison to the treasures at the British Museum. Also loved the Assyrian collection and the Japanese screens. I can see how Londoners could spend every weekend here.
Took the tube to St. Paul's Cathedral. Quite a stunning experience. Most of the interior was roped off in preparation for a concert. The organist was practicing. Aaron did not go inside as he still has a fear of large, open interior spaces.
Walked across the Millennial Bridge to the Tate Modern. So cold!
A lot of the Tate was conceptual art bullshit. This even gave Aaron a headache. I imagine conceptual artists getting together and laughing at all the money they're making from creating stupid shit, like pieces of leather hanging from the ceiling or bricks arranged on the floor or pieces of colored paper plastered on the museum walls. Such a waste of good gallery space. As Aaron said, all the conceptual art in the world doesn't equal the emotional quality of a good painting.
Took a bunch of tubes back to the Bayswater Station, which is about eight blocks from the hotel. Aaron asked if it was possible if we could go home early. I said I didn't know. I'm getting worse each day.
I want to see as much as I can, but then again, I'd rather just curl up somewhere and sleep.
Went to the British Museum this morning. Much more remarkable than I had ever imagined. The plunders of the empire! The Greek antiquities at the Getty are such a pale comparison to the treasures at the British Museum. Also loved the Assyrian collection and the Japanese screens. I can see how Londoners could spend every weekend here.
Took the tube to St. Paul's Cathedral. Quite a stunning experience. Most of the interior was roped off in preparation for a concert. The organist was practicing. Aaron did not go inside as he still has a fear of large, open interior spaces.
Walked across the Millennial Bridge to the Tate Modern. So cold!
A lot of the Tate was conceptual art bullshit. This even gave Aaron a headache. I imagine conceptual artists getting together and laughing at all the money they're making from creating stupid shit, like pieces of leather hanging from the ceiling or bricks arranged on the floor or pieces of colored paper plastered on the museum walls. Such a waste of good gallery space. As Aaron said, all the conceptual art in the world doesn't equal the emotional quality of a good painting.
Took a bunch of tubes back to the Bayswater Station, which is about eight blocks from the hotel. Aaron asked if it was possible if we could go home early. I said I didn't know. I'm getting worse each day.
I want to see as much as I can, but then again, I'd rather just curl up somewhere and sleep.
Saturday, January 10, 2009
Spent a lot of time in the underground today. Really getting to know our way around.
Went to the Wellington House. The upper floors are still the residence of the some=day=to=be duke of Wellington. The lower floors are devoted to huge canvases, gold ceilings, and mirrored walls. The attendant asked us if we wanted to see the house or the arch. We thought he said "the house or the art." We were quite confused because the art was hanging on the walls of the house! Sometimes I really wonder if we are speaking the same language.
Ate lunch at a high-end restaurant, Woosley. Endive salad, grilled sardines, steak tartar, chicken dumpling soup, and leaks. By far the most expensive meal we had and the one I least enjoyed. Too rich and too strange. Decor, however, was quite lovely. Lacquered black wood.
Saw an exhibit of Byzantine art at the Royal Academy of the Arts. I love Byzantine art! I wish it would make a comeback.
Nosed around at Harrod's. Way over the top. Like shopping at Vegas or Disneyland. Talked with two shop girls, one of whom said she has lived in London for 18 years and still doesn't know all of Harrod's. Wow, it's a lifelong adventure! But not for me.
Went to the Wellington House. The upper floors are still the residence of the some=day=to=be duke of Wellington. The lower floors are devoted to huge canvases, gold ceilings, and mirrored walls. The attendant asked us if we wanted to see the house or the arch. We thought he said "the house or the art." We were quite confused because the art was hanging on the walls of the house! Sometimes I really wonder if we are speaking the same language.
Ate lunch at a high-end restaurant, Woosley. Endive salad, grilled sardines, steak tartar, chicken dumpling soup, and leaks. By far the most expensive meal we had and the one I least enjoyed. Too rich and too strange. Decor, however, was quite lovely. Lacquered black wood.
Saw an exhibit of Byzantine art at the Royal Academy of the Arts. I love Byzantine art! I wish it would make a comeback.
Nosed around at Harrod's. Way over the top. Like shopping at Vegas or Disneyland. Talked with two shop girls, one of whom said she has lived in London for 18 years and still doesn't know all of Harrod's. Wow, it's a lifelong adventure! But not for me.
Friday, January 09, 2009
Brit Observations
A few things I've noticed about the Brits:
* They give good directions, unlike the Irish, who make a game out of giving the wrong directions.
* A lot more reading going on here--in the tube, on benches, inside churches.
* A lot fewer cell phone calls. I have yet to hear a single call that intruded upon my space and quiet. Very respectful.
* A lot more white people here than in LA.
* They give good directions, unlike the Irish, who make a game out of giving the wrong directions.
* A lot more reading going on here--in the tube, on benches, inside churches.
* A lot fewer cell phone calls. I have yet to hear a single call that intruded upon my space and quiet. Very respectful.
* A lot more white people here than in LA.
A Day of Art
Took the tube to Trafalgar Square and glutted our brains with art. The National Portrait Gallery. The National Gallery with Van Eyck's "The Arnolfini Marriage."
Took a bus to the Tate Britain and saw a lot of Rossettis--very romantic.
I love Turner, but Aaron teased me, saying he painted like someone who was going blind.
I also really like romanticized, fantasy landscapes with misty scenes and Roman ruins. Aaron detests this genre.
Otherwise, however, our taste in art is compatible. We concurred that the contemporary museum was a bunch of conceptual art bullshit. All in all, a fantastic day.
Took a bus to the Tate Britain and saw a lot of Rossettis--very romantic.
I love Turner, but Aaron teased me, saying he painted like someone who was going blind.
I also really like romanticized, fantasy landscapes with misty scenes and Roman ruins. Aaron detests this genre.
Otherwise, however, our taste in art is compatible. We concurred that the contemporary museum was a bunch of conceptual art bullshit. All in all, a fantastic day.
Thursday, January 08, 2009
We've Arrived in London
Aaron and I have arrived in London! Hooray!
I had a little medical emergency on the plane, so I was glad Aaron was with me. My blood sugar dropped to 57 (normal is 75-120). I was sweating and confused. Aaron got me an orange juice and then another. That helped a lot.
The place where we're staying is in the Bayswater section of the city, near Kensington. We took a walk and ate at a Malaysian restaurant.
The exchange rate is better than we had expected. Instead of one American dollar being worth only 50 cents, it's worth more like 75 cents. Still, things are expensive.
I had a little medical emergency on the plane, so I was glad Aaron was with me. My blood sugar dropped to 57 (normal is 75-120). I was sweating and confused. Aaron got me an orange juice and then another. That helped a lot.
The place where we're staying is in the Bayswater section of the city, near Kensington. We took a walk and ate at a Malaysian restaurant.
The exchange rate is better than we had expected. Instead of one American dollar being worth only 50 cents, it's worth more like 75 cents. Still, things are expensive.
Tuesday, January 06, 2009
Why I Chose Peritoneal Dialysis
When most people hear "dialysis," they think of being hooked up to a machine that pumps out dirty blood, cleans it, and pumps it back into the body. This is hemodialysis and is done at a medical clinic. Patients generally go into the clinic for treatments three times a week, four or five hours each time.
The advantages of hemodialysis are that someone else does the treatment and all you have to do is sit back and relax; you don't have to keep any supplies in your home; you only receive a treatment every three days; and you are able to have a pet in the house.
The disadvantages are that you have to rely on someone else to perform the treatment; you are restricted in your travel to large urban areas that might have a clinic that could accommodate you; you feel weak and tired between treatments since the toxins are building up in your body on the days without dialysis; you have to allow two large needles to be stuck in your vein each time; and you are vulnerable to the unsanitary environment that is unfortunately the norm at most hospitals and clinics.
The alternative is peritoneal dialysis. It is done four times a day, using the peritoneal membrane as a natural filter. Each exchange of fluids--clean in, dirty out--lasts about a half hour. It is done at home or in some other clean place.
The advantages are that the patient has control of the treatment; travel is not restricted to large urban areas that have clinics that can accommodate your travel plans; and, since the system is being cleaned four times a day rather than only once every three days, the patient feels better and has more energy.
The disadvantages are that the room in which the dialysis is to be performed has to be kept sterile, dirt- and dust-free; the patient is responsible for treatments; a lot of space has to be devoted to storing dialysis bags and other supplies; and dogs and cats in the home are highly discouraged as the hairs could contaminate the system and cause a serious infection.
I stewed over this for a while, wondering which way to go--hemodialysis or peritoneal. At last I decided on peritoneal because it is better for my body and my overall well-being. The whole thing about not being able to have a dog--something I have long wanted but have been unable to have because I have lived in apartments with pet restrictions--made me pretty sad. But I don't know what the future holds, and it could hold a transplant--and a dog.
It's been a little over a year since I started wearing an insulin pump. That was difficult enough, and the insulin pump's infusion site is changed every three days, so if I really wanted to keep my pump a secret--like when having sex with someone who may not know me very well--I always have the option of removing it for a few hours. But that isn't the case with the dialysis catheter. Having something else emerging from my abdomen doesn't thrill me in the least.
But when the alternative to dialysis is death, I realize I am really limiting myself if I go with the death option. A Jewish saying comes to mind: "Take care of your health. You can always commit suicide later."
The rejoinder to that, of course, is "But if I commit suicide now, I will never have a chance at health."
The advantages of hemodialysis are that someone else does the treatment and all you have to do is sit back and relax; you don't have to keep any supplies in your home; you only receive a treatment every three days; and you are able to have a pet in the house.
The disadvantages are that you have to rely on someone else to perform the treatment; you are restricted in your travel to large urban areas that might have a clinic that could accommodate you; you feel weak and tired between treatments since the toxins are building up in your body on the days without dialysis; you have to allow two large needles to be stuck in your vein each time; and you are vulnerable to the unsanitary environment that is unfortunately the norm at most hospitals and clinics.
The alternative is peritoneal dialysis. It is done four times a day, using the peritoneal membrane as a natural filter. Each exchange of fluids--clean in, dirty out--lasts about a half hour. It is done at home or in some other clean place.
The advantages are that the patient has control of the treatment; travel is not restricted to large urban areas that have clinics that can accommodate your travel plans; and, since the system is being cleaned four times a day rather than only once every three days, the patient feels better and has more energy.
The disadvantages are that the room in which the dialysis is to be performed has to be kept sterile, dirt- and dust-free; the patient is responsible for treatments; a lot of space has to be devoted to storing dialysis bags and other supplies; and dogs and cats in the home are highly discouraged as the hairs could contaminate the system and cause a serious infection.
I stewed over this for a while, wondering which way to go--hemodialysis or peritoneal. At last I decided on peritoneal because it is better for my body and my overall well-being. The whole thing about not being able to have a dog--something I have long wanted but have been unable to have because I have lived in apartments with pet restrictions--made me pretty sad. But I don't know what the future holds, and it could hold a transplant--and a dog.
It's been a little over a year since I started wearing an insulin pump. That was difficult enough, and the insulin pump's infusion site is changed every three days, so if I really wanted to keep my pump a secret--like when having sex with someone who may not know me very well--I always have the option of removing it for a few hours. But that isn't the case with the dialysis catheter. Having something else emerging from my abdomen doesn't thrill me in the least.
But when the alternative to dialysis is death, I realize I am really limiting myself if I go with the death option. A Jewish saying comes to mind: "Take care of your health. You can always commit suicide later."
The rejoinder to that, of course, is "But if I commit suicide now, I will never have a chance at health."
Off to London Tomorrow!
As soon as I began to accept the fact that dialysis was my destiny, I began to look ever more earnestly at the world map on my shower curtain. Where in the world should I go for my perhaps-last big adventure? A daunting question.
I immediately thought of New Zealand. How often I have heard wonderful things about New Zealand! Actually, I've never heard a bad word about the place or its people. I bought a guidebook and began to make plans for three or four weeks in a camper van, tooling about either the north or the south island. But a travel agent wondered if I had really thought this through. I'd be a very long way from home, without family or friends. I was already having a rough emotional time of it, wouldn't traveling solo exacerbate my sadness? What if I had a sudden decline or medical emergency? Would my insurance cover me in a foreign country? Who would help me?
Then I thought of taking a road trip in the U.S. One last camping trip. (I'm told camping is still a possibility for peritoneal dialysis patients, but what is meant by that is RVing--definitely not my kind of camping.) But then I thought of how cold it is throughout the country at this time of year. And how much colder it would be sleeping inside my truck, what is essentially a metal box!
About this time, I received an email from Virgin Airlines, touting a hotel-and-airfare deal to London. I asked Aaron if he thought he might be able to get a week off from work, given the circumstances. He spoke with his boss, and she said yes. So I booked the trip--with trip-cancellation and health insurance.
Of course it is impossible to say what the future may hold. I could be fast-tracked for a transplant. I could be the first stem-cell-kidney-replacement patient. I could drop dead tomorrow. I could be fully restored to health. Who knows?
But with peritoneal dialysis, travel is far less spontaneous, as the dialysis supplies are quite cumbersome. A month's worth of dialysis solution and tubing takes up the space of three four-drawer filing cabinets. And the places I would travel would have to provide a sterile environment in which I could conduct the dialysis. So though London may not be my very last trip, it may very well be my last trip without all this excess baggage!
Sunday, January 04, 2009
Angelic Light Beams
For about two weeks in December, I saw flashes of bright white light once or twice a day. Sitting in a restaurant. Inside my apartment. Driving down the street. No particular place or time. Not linked to any particular thought pattern or mood. These flashes were brilliant, like when you get zapped for going through a red light in a camera-controlled intersection. Or like a flash of lightening, but parallel to the ground and anywhere from two to five feet from the earth.
I wondered if anyone else saw this, and so once I asked my son if he'd seen the flash just a moment before. No, he said.
I used to see beings of light all the time. While giving massages, I would see them around my table. I'd see their glimmering bodies in my living room and around my bed. I'd see them as great clouds of shimmering light and sometimes huge pillars of light while walking at night. I would smile at them and send them love, which would make them glow brighter still. But I have seen very little of these light beings during the past two years.
One day in December, however, a being appeared in my bedroom. I spoke to the being, thanking it for appearing to me, telling it I had missed seeing beautiful beings of light, and asking it to work with my body and bring healing energy into it. As always, I directed love at the being, and its shimmering intensified. I asked that all beings of light and love who are assisting me on my journey hear my request for healing. Soon after this, the flashes of bright white light began appearing.
The seond-to-last light beam I saw was on Christmas Day. A flash of white light across the street in front of the restaurant where my mother, my son, and I were having our holiday meal. And the last one was on Dec. 27 while waiting for my friend Jose.
I have missed these angelic visitations, and I am very open and accepting to such love manifesting before my eyes once again on a daily basis.
I wondered if anyone else saw this, and so once I asked my son if he'd seen the flash just a moment before. No, he said.
I used to see beings of light all the time. While giving massages, I would see them around my table. I'd see their glimmering bodies in my living room and around my bed. I'd see them as great clouds of shimmering light and sometimes huge pillars of light while walking at night. I would smile at them and send them love, which would make them glow brighter still. But I have seen very little of these light beings during the past two years.
One day in December, however, a being appeared in my bedroom. I spoke to the being, thanking it for appearing to me, telling it I had missed seeing beautiful beings of light, and asking it to work with my body and bring healing energy into it. As always, I directed love at the being, and its shimmering intensified. I asked that all beings of light and love who are assisting me on my journey hear my request for healing. Soon after this, the flashes of bright white light began appearing.
The seond-to-last light beam I saw was on Christmas Day. A flash of white light across the street in front of the restaurant where my mother, my son, and I were having our holiday meal. And the last one was on Dec. 27 while waiting for my friend Jose.
I have missed these angelic visitations, and I am very open and accepting to such love manifesting before my eyes once again on a daily basis.
Evidence of Alien Abduction
Here it is--proof positive of alien abduction! I went to bed last night without a mark on my calf, and I woke up this morning with these scrapes. Now a casual observer might remark that these are nothing but the result of my nails scratching my legs during my sleep.
But look again: The upper set of scratches consists of six lines. If they were from my nails, there would be four lines. Perhaps five, but as you can see with your own fingers, if the thumb is included, it is not in alignment with the other four fingers and so would not produce five parallel lines as the thumb is perpendicular to the plane of the fingers. And either way, that doesn't explain six equidistant lines.
Now I have woken up on other nights to find scratches, cuts, or bruises. But these have all been small and were easily dismissed. But this is significant.
Also note the lower set of scratches. Not sure if it's clear in the photo, but the lower marks are not lines but circles. The first row--the one nearest the front of my body--consists of two circles, followed by another row of two, but with the first circle equidistant between the circles of the first row. The third row consists of three circles, and the fourth of another three circles, the middle one being dark red. The fifth row has one dark circle directly opposite the dark circle in row four. And then the sixth row is a single circle. It's conceivable--though not probable--that my fingers could have scratched the top set of lines. But how do fingernails make circles of the same size?
What's more, I wore scrubs to bed last night. The snug-fitting pants are not made to inch up my leg and expose skin. In fact, they are so snug that I cannot easily roll up the pants leg to my knee. And I certainly don't have the kind of sharp nails that would be necessary to draw blood through clothing. Also, the pant leg was not cut or in any way damaged.
Hmmm...This is all very interesting, especially considering my post of Dec. 13, "You Know You're Desperate When..." in which I wrote of my fantasy of being abducted by space aliens who would replace my in-need-of-assistance organs with brand-new ones cooked up in their med labs just for me.
When I showed my son the evidence, he asked if I had learned anything from the aliens. I thought for a moment, then answered, "Yes, I sure would have thaought that with their advanced technology, they'd have a less dramatic way to take a blood sample!"
Thursday, January 01, 2009
Step Away From the Edge!
For months I have been putting off dialysis by whatever means possible--prayer, meditation, affirmations, solicitation of prayers from others, twice-weekly acupuncture treatments and massage, at-home moxibustion, severely reducing intake of animal protein, a positive attitude, herbal formulas and kidney-tonifying teas and tinctures, ingestion of large quantities of dehydrated bovine kidney and pancreas, invocation of angelic assistance, pleading, and begging.
All through this I have been expecting a miracle. I've even had the balls to tell my doctors that.
That I have not seen improvement in my kidney function is not only disappointing and disheartening, but I have at times felt betrayed by God. I have felt like Jesus on the cross when he said, "Father, Father, why have you forsaken me?"
This is not a new experience for me. Hundreds of times over the past 37 years of diabetes, I have seen improvements in my condition. Sometimes a drop in blood sugar level and a corresponding drop in insulin requirements. Sometimes renewed energy and the ability to walk for quite a distance without becoming exhausted or out of breath. Every time, each of these hundreds of times, I have thought, "Oh, thank you, thank you, thank. This is the turning point. I am being restored to health!"
And every time, this improvement has been short-lived, sometimes just a day. Each time I have felt a betrayal, even a sense of being cosmically toyed with.
But the high points I have experienced during the past several months have been more acute. During the past 37 years, I have faced multiple daily insulin injections, an insulin pump, hemorrhages in my eyes, cataract surgery, congestive heart failure, severe anemia and blood loss, weakness, fatigue, scores of life-threatening medical emergencies and hospitalizations, transfusions, adverse drug reactions, and an endless stream of doctors' appointments, tests and lab work. But when it came to dialysis, I always said I would rather die than undergo this constriction of my life. Now dialysis is staring me in the face, and I have to make a decision: dialysis or die.
On Monday I saw my nephrologist, Dr. Butman. He put it this way: "Heidi, you're like the person in a movie who is dancing on the window ledge of a high-rise building. You're feeling fine, as if nothing is wrong. Well, I'm saying, 'Heidi, you'd be much safer if you just stepped back inside the building.'" His analogy made me laugh. I AM the woman dancing on the window ledge!
Right now I feel fine, not great, but not like I'm dying. In fact, Dr. Butman said that, considering my abysmal lab markers, I look really good. But as he said, that could change very quickly. If my potassium level suddenly became elevated, which happens in end-stage kidney disease, I could die without warning, in the time it takes to snap your fingers. Other signs of the end would be a little slower--the buildup of toxins to the point where I'm nauseous, can't eat, and am vomiting, accompanied by weakness and a wasting away. And a massive heart attack or stroke are also good possibilities.
Furthermore, it's better to start dialysis while I'm still feeling good, rather than start it on an emergency basis through an artery in my neck. Since it takes approximately three weeks for the surgical incision to heal, it would be best to undergo the surgery as soon as possible so that the catheter in my abdomen would be in place and ready to go.
So I scheduled surgery for Jan. 30, a little over a month away. I'm stepping away from the edge, but damn it, I'm still expecting a miracle. Something on the order of a band of angels sweeping me from the ledge and depositing me safely in the Land of Properly Working Organs.
All through this I have been expecting a miracle. I've even had the balls to tell my doctors that.
That I have not seen improvement in my kidney function is not only disappointing and disheartening, but I have at times felt betrayed by God. I have felt like Jesus on the cross when he said, "Father, Father, why have you forsaken me?"
This is not a new experience for me. Hundreds of times over the past 37 years of diabetes, I have seen improvements in my condition. Sometimes a drop in blood sugar level and a corresponding drop in insulin requirements. Sometimes renewed energy and the ability to walk for quite a distance without becoming exhausted or out of breath. Every time, each of these hundreds of times, I have thought, "Oh, thank you, thank you, thank. This is the turning point. I am being restored to health!"
And every time, this improvement has been short-lived, sometimes just a day. Each time I have felt a betrayal, even a sense of being cosmically toyed with.
But the high points I have experienced during the past several months have been more acute. During the past 37 years, I have faced multiple daily insulin injections, an insulin pump, hemorrhages in my eyes, cataract surgery, congestive heart failure, severe anemia and blood loss, weakness, fatigue, scores of life-threatening medical emergencies and hospitalizations, transfusions, adverse drug reactions, and an endless stream of doctors' appointments, tests and lab work. But when it came to dialysis, I always said I would rather die than undergo this constriction of my life. Now dialysis is staring me in the face, and I have to make a decision: dialysis or die.
On Monday I saw my nephrologist, Dr. Butman. He put it this way: "Heidi, you're like the person in a movie who is dancing on the window ledge of a high-rise building. You're feeling fine, as if nothing is wrong. Well, I'm saying, 'Heidi, you'd be much safer if you just stepped back inside the building.'" His analogy made me laugh. I AM the woman dancing on the window ledge!
Right now I feel fine, not great, but not like I'm dying. In fact, Dr. Butman said that, considering my abysmal lab markers, I look really good. But as he said, that could change very quickly. If my potassium level suddenly became elevated, which happens in end-stage kidney disease, I could die without warning, in the time it takes to snap your fingers. Other signs of the end would be a little slower--the buildup of toxins to the point where I'm nauseous, can't eat, and am vomiting, accompanied by weakness and a wasting away. And a massive heart attack or stroke are also good possibilities.
Furthermore, it's better to start dialysis while I'm still feeling good, rather than start it on an emergency basis through an artery in my neck. Since it takes approximately three weeks for the surgical incision to heal, it would be best to undergo the surgery as soon as possible so that the catheter in my abdomen would be in place and ready to go.
So I scheduled surgery for Jan. 30, a little over a month away. I'm stepping away from the edge, but damn it, I'm still expecting a miracle. Something on the order of a band of angels sweeping me from the ledge and depositing me safely in the Land of Properly Working Organs.
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