On Thursday night, just after turning off all the lights, a bright blue flash zoomed across my living room. Years ago, perhaps nine or 10 years ago, the same blue energy appeared in my bedroom and moved about the room for a minute or so. Both times I was left with a heightened sense of well-being, a zing. I consider both to be angelic presences, something we all could use now and again.
On both occasions, the blue I saw was a bit more intense than the inner blue of this swirl. I always called this cornflower blue, though in truth cornflowers are more of a true blue.
Saturday, January 16, 2010
Wednesday, January 06, 2010
Encouraging Lab Results
I just checked my lab results for blood that was drawn this morning in preparation for my monthly dialysis clinic visit. They are very encouraging. The measures of kidney function are the best they've been in a long time. Of course, they're still abnormal, but they are improving. And all the other tests, from electrolytes to blood chemistry, are within the normal range.
Creatnine, measure of protein in the urine. If the kidneyes are not functioning properly, protein is leaching out through the urine. My results: 4.5 (normal .6-1.1). But that's the best reading since December 2008, when I had a 4.2. During the past year, my levels have been in the upper 5's and 6's.
BUN, another measure of kidney health. Normal is anything less than 19. Today's level was 49--a level I have not seen since August of 2007, when I was 44. I've been as high as 103 since then and have generally seen levels in the high 50s-70s.
GFR--Even this indicator of kidney health has creeped up from a low of 8 to 10. Anything lower than 15 signals an immediate need for dialysis.
Hemoglobin--an indicator of anemia if it's below 12. I have inched back up to 10.8, from a low of 7.8 post-surgery.
I am taking all this as very positive news. My kidneys are waking up. I am very grateful for this progress toward my vision of perfect health.
Creatnine, measure of protein in the urine. If the kidneyes are not functioning properly, protein is leaching out through the urine. My results: 4.5 (normal .6-1.1). But that's the best reading since December 2008, when I had a 4.2. During the past year, my levels have been in the upper 5's and 6's.
BUN, another measure of kidney health. Normal is anything less than 19. Today's level was 49--a level I have not seen since August of 2007, when I was 44. I've been as high as 103 since then and have generally seen levels in the high 50s-70s.
GFR--Even this indicator of kidney health has creeped up from a low of 8 to 10. Anything lower than 15 signals an immediate need for dialysis.
Hemoglobin--an indicator of anemia if it's below 12. I have inched back up to 10.8, from a low of 7.8 post-surgery.
I am taking all this as very positive news. My kidneys are waking up. I am very grateful for this progress toward my vision of perfect health.
Monday, January 04, 2010
How Others Saw my Mother
I have heard from a few cousins who said my mother was a big inspiration for them. They saw her as an adventurer and as a feminist. My cousin Mary saved all the articles that my mother wrote for the local paper about her travels in Europe, 1952-54. She was 12 years old at the time, and my mother's writings had a significant impact on her. And this past year Mary lovingly typed my mother's handwritten memoirs. My cousin Jane was also very moved by my mother and considered her an independent woman.
I truly believe this was my mother before she was married. It was gutsy of her to leave the U.S. and live in Europe for two years. That was certainly adventuresome, and it was the mark of a liberated woman.
It's just that this was not the woman I knew. For some reason, maybe because she was so unhappy in her marriage and maybe because she felt trapped in the role of the mother of two children, she shut down. Far from adventuresome, she downright refused to participate in activities with her family. She grudgingly went camping, but never went exploring with Dad, Tim, and me. Instead she would stay at camp and read the newspaper. A few years back, my brother happened upon a journal I had kept during one of our extended camping trips to Montana and Wyoming. Every entry began with, "Dad, Tim, and I went on a long hike after breakfast. We went exploring. Mom didn't want to go. She stayed in camp and read."
So often I tried to get her to participate, but she always begged out of whatever I suggested. I remember driving 150 or more miles to Joshua Tree National Monument with her and Aaron when she visited California one winter. I was so excited to show her the fascinating boulders in this area--something she definitely could not see in Wisconsin. Despite cajoling, she refused to leave the van and walk a few feet to take in this glorious landscape. This was her reaction to hundreds of things I attempted to entice her to do over the decades. She just wasn't interested and didn't want to try anything new. I'm sorry she shut down her adventuresome side, but perhaps she used it all up in Europe during those two magical years.
But that's not exactly true either. She did go on adventures, only not with her family. I remember that she took solo vacations--a driving trip around the Great Lakes, a barefoot cruise of the islands off Maine, a cross-Canadian train trip. And she vacationed with her friend Marianne in the Caribbean. No, I guess it's just that she didn't want to do anything with her husband and kids. And when I was not yet a teenager, she applied for a permanent position in Germany. Had she gotten the job, she would have left her family and perhaps continued the adventure she started in 1952. So perhaps she was adventuresome, as my cousines maintain. It's just that I never saw that side of her.
And liberated woman, well, that too is not quite right. Yes, she gave money to the National Organization for Women and, yes, she worked in responsible positions. But as my father said, "She wants to be independent, and she wants someone to take care of her." I don't believe she ever read any set of directions. She would simply say she couldn't do it and leave it for someone else to figure out. This kind of helplessness I did not associate with liberation. She would also say very traditional things about men and women, especially as regards relationships. And she would always take the advice of a man over any woman's. In fact, I could say something and she wouldn't hear it, and my brother could say the same thing a few minutes later and she'd take it to heart. I think she wanted to be progressive and thought of herself as progressive, but really would have preferred that a man take care of everything from money to fixing things. Of course, when no man was around, I became the man, running errands, fixing things, taking care of so many things that she was capable of doing on her own but didn't want to. My attitude has always been to do as much as I possibly can for myself and only then ask for help, but this was not my mother's m.o.
As I grow older, however, I think what my dad said cynically actually sounds pretty good. How wonderful it would be to love a man and he love me and have him say--and mean it--"Honey, you just do whatever you want. Take classes at the university. Learn to play guitar. Get a job. Take trips with your girlfriends. Volunteer. Write poetry. Whatever you please. And don't worry about the money. I've got plenty for the both of us." Yes, I think it would be utterly fantastic to be independent and taken care of! A good idea, Mom!
I truly believe this was my mother before she was married. It was gutsy of her to leave the U.S. and live in Europe for two years. That was certainly adventuresome, and it was the mark of a liberated woman.
It's just that this was not the woman I knew. For some reason, maybe because she was so unhappy in her marriage and maybe because she felt trapped in the role of the mother of two children, she shut down. Far from adventuresome, she downright refused to participate in activities with her family. She grudgingly went camping, but never went exploring with Dad, Tim, and me. Instead she would stay at camp and read the newspaper. A few years back, my brother happened upon a journal I had kept during one of our extended camping trips to Montana and Wyoming. Every entry began with, "Dad, Tim, and I went on a long hike after breakfast. We went exploring. Mom didn't want to go. She stayed in camp and read."
So often I tried to get her to participate, but she always begged out of whatever I suggested. I remember driving 150 or more miles to Joshua Tree National Monument with her and Aaron when she visited California one winter. I was so excited to show her the fascinating boulders in this area--something she definitely could not see in Wisconsin. Despite cajoling, she refused to leave the van and walk a few feet to take in this glorious landscape. This was her reaction to hundreds of things I attempted to entice her to do over the decades. She just wasn't interested and didn't want to try anything new. I'm sorry she shut down her adventuresome side, but perhaps she used it all up in Europe during those two magical years.
But that's not exactly true either. She did go on adventures, only not with her family. I remember that she took solo vacations--a driving trip around the Great Lakes, a barefoot cruise of the islands off Maine, a cross-Canadian train trip. And she vacationed with her friend Marianne in the Caribbean. No, I guess it's just that she didn't want to do anything with her husband and kids. And when I was not yet a teenager, she applied for a permanent position in Germany. Had she gotten the job, she would have left her family and perhaps continued the adventure she started in 1952. So perhaps she was adventuresome, as my cousines maintain. It's just that I never saw that side of her.
And liberated woman, well, that too is not quite right. Yes, she gave money to the National Organization for Women and, yes, she worked in responsible positions. But as my father said, "She wants to be independent, and she wants someone to take care of her." I don't believe she ever read any set of directions. She would simply say she couldn't do it and leave it for someone else to figure out. This kind of helplessness I did not associate with liberation. She would also say very traditional things about men and women, especially as regards relationships. And she would always take the advice of a man over any woman's. In fact, I could say something and she wouldn't hear it, and my brother could say the same thing a few minutes later and she'd take it to heart. I think she wanted to be progressive and thought of herself as progressive, but really would have preferred that a man take care of everything from money to fixing things. Of course, when no man was around, I became the man, running errands, fixing things, taking care of so many things that she was capable of doing on her own but didn't want to. My attitude has always been to do as much as I possibly can for myself and only then ask for help, but this was not my mother's m.o.
As I grow older, however, I think what my dad said cynically actually sounds pretty good. How wonderful it would be to love a man and he love me and have him say--and mean it--"Honey, you just do whatever you want. Take classes at the university. Learn to play guitar. Get a job. Take trips with your girlfriends. Volunteer. Write poetry. Whatever you please. And don't worry about the money. I've got plenty for the both of us." Yes, I think it would be utterly fantastic to be independent and taken care of! A good idea, Mom!
Remembering Mom
Every time I eat a grapefruit, I think of my mom. When I was a young girl, she and I often ate grapefruit halves sprinkled with sugar. Today I skip the sugar. I also think of the fresh blueberries we had with cold milk and the soft-boiled eggs sitting in painted egg cups. It's funny that I should think of her in terms of food because she was not a good cook. But I did like what she made for breakfast--poached eggs, something I've never had anywhere else but in my mother's kitchen; oatmeal; and waffles made from scratch and in a waffle iron. Buttered toast sprinkled with cinnamon and sugar--something else I haven't had since I was a child, though I made it for my own child once in a while.
The other food items I associate with my mother are rhubarb crunch, which she made from a rhubarb plant that grew outside against the wall of the house, and iceberg lettuce with chives that I cut from a plant that grew outside too. Interesting that I bought a chive plant for the bay window in my kitchen a few days ago at Target.
One of her regular entrees was tuna casserole with corn flakes on top for a crunch. On Christmas Eve she would make Swedish meatballs--ground veal smothered in cream-of-mushroom soup. For my birthday, she would make a fruit salad with canned mandarin oranges, bananas, dates, apples, marshino cherries, canned fruit cocktail, and Cool Whip. And a few times on Christmas Day, she pulled out her mother's cast-iron pan and made foeden, a ball of dough seasoned with cardamon and rolled in sugar, a northern German delicacy.
Funny that I should so closely associate my mother with food, since she was not a cook and since meals were often stressful, my dad pouting and refusing to sit with us, or if he did, acting as if it was a big pain. The mind sure is a mystery.
The other food items I associate with my mother are rhubarb crunch, which she made from a rhubarb plant that grew outside against the wall of the house, and iceberg lettuce with chives that I cut from a plant that grew outside too. Interesting that I bought a chive plant for the bay window in my kitchen a few days ago at Target.
One of her regular entrees was tuna casserole with corn flakes on top for a crunch. On Christmas Eve she would make Swedish meatballs--ground veal smothered in cream-of-mushroom soup. For my birthday, she would make a fruit salad with canned mandarin oranges, bananas, dates, apples, marshino cherries, canned fruit cocktail, and Cool Whip. And a few times on Christmas Day, she pulled out her mother's cast-iron pan and made foeden, a ball of dough seasoned with cardamon and rolled in sugar, a northern German delicacy.
Funny that I should so closely associate my mother with food, since she was not a cook and since meals were often stressful, my dad pouting and refusing to sit with us, or if he did, acting as if it was a big pain. The mind sure is a mystery.
Sunday, January 03, 2010
New Decade
The decade that just passed has been a lonesome one. Mike broke up with me in April of 2000, and I have not had a relationship since. Only dates and not many of them.
I am envisioning this decade as one of love, relationship, passion, intimacy, and health. A decade that reverses what was amiss about the last.
Just the fact that I've already had a date this year is a very good sign. I know that things will continue to improve. Amen!
I am envisioning this decade as one of love, relationship, passion, intimacy, and health. A decade that reverses what was amiss about the last.
Just the fact that I've already had a date this year is a very good sign. I know that things will continue to improve. Amen!
Best Date in Years
Last year I went out with a 32-year-old DJ and professional gambler. Well, if you can really call what we did "going out." I would generally drive over to the coffeeshop where he likes to hang out, and he would tell me the same stories over and again. Once we went to a strip club where he was thinking of working; basically, we were there to check out the dancers. Once we saw a movie--"Transformers," do you believe it! And twice we went for a walk. Other than that, we necked a bit when I dropped him off in front of his apartment building. But he was always said something nice about how I looked every time I saw him. I can't knock that.
Other than this, I had one date all year. I actually had another scheduled, but the man stood me up. The one that did occur was with an X-ray tech. He suggested we meet at noon. I asked if this was a lunch date. He said, "No, just coffee." I got there on time, he was 20 minutes late. I had already bought my own coffee. Then he said he was hungry and was going to have lunch. I had already eaten because he had said it was not a lunch date.
So that was the full extent of dating in 2009.
Today, the third day of the new year and of the new decade, I went on a date. Armen is trim, well-dressed, the best looking man I've been out with in a long time. We met in Hermosa Beach, walked around near the ocean, then had dinner at a little Italian restaurant. Armen kept up his end of the conversation and asked me a lot of questions. He maintained good eye contact. I liked his kisses.
But always in my consciousness was dialysis. He touched my side, but since I was wearing a heavy coat, he could not feel my tubing. If I see him again, I will have to tell him about dialysis, the insulin pump, and the cardiac surgery because I'm sure he would touch or see one or the other. I really don't know how to go about this. Do I tell him over the phone when we make plans for the next date? Do I tell him in person? Do I wait until he's touching me and then say, "I've got something to tell you"?
I tend to think this will be a deal breaker with Armen. He said quite a few times during the evening that he was selfish about his time and that a wife, chidren, and pets never fit in. Someone who is so used to thinking only of himself would have a hard time with my trappings.
So anyways that was the best date I've had in years, though, of course, that isn't saying a whole lot, given the dates I've been on. But I think of what I read in a spiritual book about not thinking, "Why haven't I met the man who is matched to me?" but rather realizing that the universe is sending men my way and with each of them I can say back to the universe, "You know, this and this was really wonderful about him, but I need some more of X or less of Y in the next man you send my way." In short, don't think of the dates as failures but as opportunities to refine what I really want.
After I got home tonight, I took Rasputin for a walk. We were moving down a semi-dark alley, and I tripped over a bump in the pavement and fell. Little Rasputin came right up to me and gave me love. That's what I would like in the man who is matched to me--someone who loves me despite my boo boos.
Other than this, I had one date all year. I actually had another scheduled, but the man stood me up. The one that did occur was with an X-ray tech. He suggested we meet at noon. I asked if this was a lunch date. He said, "No, just coffee." I got there on time, he was 20 minutes late. I had already bought my own coffee. Then he said he was hungry and was going to have lunch. I had already eaten because he had said it was not a lunch date.
So that was the full extent of dating in 2009.
Today, the third day of the new year and of the new decade, I went on a date. Armen is trim, well-dressed, the best looking man I've been out with in a long time. We met in Hermosa Beach, walked around near the ocean, then had dinner at a little Italian restaurant. Armen kept up his end of the conversation and asked me a lot of questions. He maintained good eye contact. I liked his kisses.
But always in my consciousness was dialysis. He touched my side, but since I was wearing a heavy coat, he could not feel my tubing. If I see him again, I will have to tell him about dialysis, the insulin pump, and the cardiac surgery because I'm sure he would touch or see one or the other. I really don't know how to go about this. Do I tell him over the phone when we make plans for the next date? Do I tell him in person? Do I wait until he's touching me and then say, "I've got something to tell you"?
I tend to think this will be a deal breaker with Armen. He said quite a few times during the evening that he was selfish about his time and that a wife, chidren, and pets never fit in. Someone who is so used to thinking only of himself would have a hard time with my trappings.
So anyways that was the best date I've had in years, though, of course, that isn't saying a whole lot, given the dates I've been on. But I think of what I read in a spiritual book about not thinking, "Why haven't I met the man who is matched to me?" but rather realizing that the universe is sending men my way and with each of them I can say back to the universe, "You know, this and this was really wonderful about him, but I need some more of X or less of Y in the next man you send my way." In short, don't think of the dates as failures but as opportunities to refine what I really want.
After I got home tonight, I took Rasputin for a walk. We were moving down a semi-dark alley, and I tripped over a bump in the pavement and fell. Little Rasputin came right up to me and gave me love. That's what I would like in the man who is matched to me--someone who loves me despite my boo boos.
Thursday, December 31, 2009
Freed of a Hopeless Infatuation
For a good part of this year that is ending in a few hours, I was googly about a man who was obviously googly about me. He would frequently lose his train of thought when speaking to me or stop mid-sentence and stare at me or just be utterly confused in my presence. I hadn't experienced that kind of behavior for more than a decade. It was so sweet, so thrilling, so intriguing.
Of course, the cards were stacked high to the ceiling against us: He is 10 years younger than me, he is or was married (halfway through the year he stopped wearing his wedding ring), he and I have a professional relationship, and I'm a dialysis patient. I spent an awful lot of time thinking about him and fantasizing about him during the first 10 months of 2009.
But in the last few months something switched off. I still enjoy seeing him and talking with him, but I realize nothing will ever happen, and with that knowledge has come peace. Now I rarely think of him, and when I do, it's for practical reasons, not to indulge in some never-neverland dreaming.
A few times during the last few weeks, I have returned to an old ritual, talking aloud, as if to a lover, when I bed down at night. And when I went to the movies this afternoon, I closed my eyes for a moment and imagined my love--whoever and wherever he may be--sitting next to me, holding my hand, and smiling. May 2010 will be the year when that man appears in the flesh.
Of course, the cards were stacked high to the ceiling against us: He is 10 years younger than me, he is or was married (halfway through the year he stopped wearing his wedding ring), he and I have a professional relationship, and I'm a dialysis patient. I spent an awful lot of time thinking about him and fantasizing about him during the first 10 months of 2009.
But in the last few months something switched off. I still enjoy seeing him and talking with him, but I realize nothing will ever happen, and with that knowledge has come peace. Now I rarely think of him, and when I do, it's for practical reasons, not to indulge in some never-neverland dreaming.
A few times during the last few weeks, I have returned to an old ritual, talking aloud, as if to a lover, when I bed down at night. And when I went to the movies this afternoon, I closed my eyes for a moment and imagined my love--whoever and wherever he may be--sitting next to me, holding my hand, and smiling. May 2010 will be the year when that man appears in the flesh.
If Only They Would Talk to One Another
Finally, I can begin to see a light at the end of the tunnel. At my monthly clinic visit, I complained to my nephrologist about my weakness, fatigue, drum-tight legs, distended stomach, shortness of breath, and upwelling of fluids into my chest cavity. His solution was to increase the amount of dialysis solution I would be carrying inside me during the day from two liters to 2.5. Well, this sure did not help. Not only did the extra fluid not drain the excess fluids from my body, it accentuated the shortness of breath and oppressive sense of fullness in my diaphragm.
Dr. Mai, my acupuncturist, had been treating me, but could not put needles in my right leg because it was so tight and so painful. When I decided to go back to two liters of solution, Dr. Mai gave me an herbal formula to reduce the swelling. Wow, has it been great! My urination has more than doubled, my right leg is quickly approaching the size of the left leg, and I am no longer plagued by shortness of breath and the oppressive feeling that I could not breathe because of the crowding out of my lungs with the excess fluid.
This is a dramatic example of the need for communication between doctors and alternative health practitioners. Boy, if only doctors and acupunturists could work together on a plan of treatment. Had I continued to follow the Western medical approach and not sought help from my acupuncturist, I really would have been in an awful place. As it is, I am beginning to feel an influx of energy, a lightness in my step.
In large measure, I owe what health and vitality I have to acupuncture. How few dialysis patients are receiving acupuncture treatments. Indeed, acupuncture is not even on their radar screens. I am so thankful that acupuncture is a weekly or even twice-weekly part of my overall health strategy. I would be in sorry shape if I only relied on conventional medicine for help.
Dr. Mai, my acupuncturist, had been treating me, but could not put needles in my right leg because it was so tight and so painful. When I decided to go back to two liters of solution, Dr. Mai gave me an herbal formula to reduce the swelling. Wow, has it been great! My urination has more than doubled, my right leg is quickly approaching the size of the left leg, and I am no longer plagued by shortness of breath and the oppressive feeling that I could not breathe because of the crowding out of my lungs with the excess fluid.
This is a dramatic example of the need for communication between doctors and alternative health practitioners. Boy, if only doctors and acupunturists could work together on a plan of treatment. Had I continued to follow the Western medical approach and not sought help from my acupuncturist, I really would have been in an awful place. As it is, I am beginning to feel an influx of energy, a lightness in my step.
In large measure, I owe what health and vitality I have to acupuncture. How few dialysis patients are receiving acupuncture treatments. Indeed, acupuncture is not even on their radar screens. I am so thankful that acupuncture is a weekly or even twice-weekly part of my overall health strategy. I would be in sorry shape if I only relied on conventional medicine for help.
Saturday, December 26, 2009
The Image vs. the Reality
A few months ago, Aaron and I attended a conference for dialysis patients. Approximately 400 people were in attendance. At one point in the keynote speaker's address, she asked for a show of hands to her question, "How many of you have people in your life who assumed you were incapable of doing things that you were actually quite capable of doing?" Most everyone raised his or her hand. Not me. I actually deal with the opposite situation: friends who must believe my life has changed very little since the onset of dialysis, who believe that I can still do everything I always used to do and more.
On one hand, this says a great deal about how I present myself to the world. I don't focus on limitations and make a point of doing as much as I possibly can for myself. People see me as vibrant, strong, and full of life, and I am grateful for their positive vision of me.
On the other hand, it seems odd that my friends have such a dim idea of what this huge part of my life entails. It would be as if a friend didn't know I was single, or if she didn't know I had a child or that I worked as a writer. It's similar to how many people have said to me over the years that diabetes is "just avoiding candy." Wow, if only that were true! That would be easy. It's how it attacks every organ and every tissue of the body that's the difficult part.
Last summer my friend Araia, who lives in rural northeastern Washington state, said I should visit her. We could float on inner tubes down the river that serves as one of her property lines, she said, not realizing that, though this sounds idyllic, it's no longer possible. Any water activity besides a shower is verboten, since any contact with water carries with it the high possibility of infection through the exit site for the tubing that emerges from my abdomen.
Last week my friend Helene in Nova Scotia asked me if I'd like to go to New Zealand with her. Helene is an Air Canada retiree and has lifetime discount tickets. Plus, she has a friend on the North Island with whom we could stay. I have always wanted to go to New Zealand and was thrilled with this plan. I emailed my globe-trotting, always-up-for-an-adventure friend Heather, who took a year to explore the South Pacific. Though Heather's travels were 12 years ago, I still wanted her tips on kiwi journeys. She enthusiastically wrote back that by all means I should hitchhike as it is totally safe and completely acceptable. Like Araia's plan of floating down a river, this, too, sounds quite romantic and adventuresome, but is completely impossible. The dialysis machine weighs about 35 pounds, and the supplies I need for nightly dialysis weigh another 30 pounds--that's 30 pounds every day! Hitchhiking would only be possible if a U-Haul were following me.
So, though I appreciate Araia's and Heather's image of me as someone who can do anything, I began making a mental list of all the things that are no longer possible with dialysis. They fall into three categories: hygienic, logistical, and aesthetic.
Hygienic--Anything that involves water is out. (I am, thank goodness, allowed to shower, but this does not involve submersion.) Canoing, kayaking, water skiing, surfing, swimming, jacuzzi-ing, inner tubing, bathing. Anything that involves dirty conditions, as the environment in which I hook up to the dialysis machine and cap off in the morning must be as free of germs and dirt as possible. This would mean having a closed-off room in which to conduct dialysis, a room without open windows, ceiling fans, A/C, blowing heaters, animals. No putting down a sleeping bag on someone's living room floor.
Logistical--Travel is limited to personal automobile (in which to lug around all my dialysis solution and other equipment) or staying at one location (such as a resort, hotel, or friend's house). Travel by any other means is not feasible--train, bicycle, foot, boat, horse or other pack animal. No late-night events or all-night events. (Last night, for example, I was a party-pooper, saying no to a 7 p.m. movie, as I had to be home by 9:30 to hook up.) No spontaneous trips, esp. any that involve flying, as arrangements for the shipment of supplies must be made six weeks in advance for domestic travel and three months in advance for overseas travel.
Aesthetic--No midriffs, tight-fitting clothes, or bathing suits, as they would show the outlines of my tubing and exit site. No dirty dancing, as the man would rub against my tubing and dislodge the transfer set from its retaining belt. No crazy sex, as the 12 inches of tubing, 3-1/2-inch plastic transfer set, and exit site bandaging really get in the way--to say nothing for the bulk and the 18 inches of tubing of my insulin pump. No romantic bedroom, as it is piled high with boxes of dialysis solution and encumbered by a therapy table.
So, though I will continue to be strong and positive, doing as much as I possibly can, it would be nice, too, if friends understood that dialysis is not a walk in the park, that it is a major alteration to the fabric of my life, that I want to be free of it as soon as possible, that if I don't get free of it soon I will die, that I absolutely do not want to spend the rest of my days hooked up to a machine every night.
On one hand, this says a great deal about how I present myself to the world. I don't focus on limitations and make a point of doing as much as I possibly can for myself. People see me as vibrant, strong, and full of life, and I am grateful for their positive vision of me.
On the other hand, it seems odd that my friends have such a dim idea of what this huge part of my life entails. It would be as if a friend didn't know I was single, or if she didn't know I had a child or that I worked as a writer. It's similar to how many people have said to me over the years that diabetes is "just avoiding candy." Wow, if only that were true! That would be easy. It's how it attacks every organ and every tissue of the body that's the difficult part.
Last summer my friend Araia, who lives in rural northeastern Washington state, said I should visit her. We could float on inner tubes down the river that serves as one of her property lines, she said, not realizing that, though this sounds idyllic, it's no longer possible. Any water activity besides a shower is verboten, since any contact with water carries with it the high possibility of infection through the exit site for the tubing that emerges from my abdomen.
Last week my friend Helene in Nova Scotia asked me if I'd like to go to New Zealand with her. Helene is an Air Canada retiree and has lifetime discount tickets. Plus, she has a friend on the North Island with whom we could stay. I have always wanted to go to New Zealand and was thrilled with this plan. I emailed my globe-trotting, always-up-for-an-adventure friend Heather, who took a year to explore the South Pacific. Though Heather's travels were 12 years ago, I still wanted her tips on kiwi journeys. She enthusiastically wrote back that by all means I should hitchhike as it is totally safe and completely acceptable. Like Araia's plan of floating down a river, this, too, sounds quite romantic and adventuresome, but is completely impossible. The dialysis machine weighs about 35 pounds, and the supplies I need for nightly dialysis weigh another 30 pounds--that's 30 pounds every day! Hitchhiking would only be possible if a U-Haul were following me.
So, though I appreciate Araia's and Heather's image of me as someone who can do anything, I began making a mental list of all the things that are no longer possible with dialysis. They fall into three categories: hygienic, logistical, and aesthetic.
Hygienic--Anything that involves water is out. (I am, thank goodness, allowed to shower, but this does not involve submersion.) Canoing, kayaking, water skiing, surfing, swimming, jacuzzi-ing, inner tubing, bathing. Anything that involves dirty conditions, as the environment in which I hook up to the dialysis machine and cap off in the morning must be as free of germs and dirt as possible. This would mean having a closed-off room in which to conduct dialysis, a room without open windows, ceiling fans, A/C, blowing heaters, animals. No putting down a sleeping bag on someone's living room floor.
Logistical--Travel is limited to personal automobile (in which to lug around all my dialysis solution and other equipment) or staying at one location (such as a resort, hotel, or friend's house). Travel by any other means is not feasible--train, bicycle, foot, boat, horse or other pack animal. No late-night events or all-night events. (Last night, for example, I was a party-pooper, saying no to a 7 p.m. movie, as I had to be home by 9:30 to hook up.) No spontaneous trips, esp. any that involve flying, as arrangements for the shipment of supplies must be made six weeks in advance for domestic travel and three months in advance for overseas travel.
Aesthetic--No midriffs, tight-fitting clothes, or bathing suits, as they would show the outlines of my tubing and exit site. No dirty dancing, as the man would rub against my tubing and dislodge the transfer set from its retaining belt. No crazy sex, as the 12 inches of tubing, 3-1/2-inch plastic transfer set, and exit site bandaging really get in the way--to say nothing for the bulk and the 18 inches of tubing of my insulin pump. No romantic bedroom, as it is piled high with boxes of dialysis solution and encumbered by a therapy table.
So, though I will continue to be strong and positive, doing as much as I possibly can, it would be nice, too, if friends understood that dialysis is not a walk in the park, that it is a major alteration to the fabric of my life, that I want to be free of it as soon as possible, that if I don't get free of it soon I will die, that I absolutely do not want to spend the rest of my days hooked up to a machine every night.
Saturday, December 19, 2009
A Merry Night of Caroling
Though this past month has been hell, it finished in a beautiful way--with the annual caroling party. Though about 15 people said they would make it, only four actually did. With Aaron, Rasputin the reluctant elf dog, and me that made seven all told. A good-sized group.
We did less caroling for brandy than we have done in previous years, but still one household poured their last dregs of Christian Brothers into the guys' Solo cups (I just sing and make merry; I don't drink), and O'Connell's gave out free shots. Though some people were too cool to indulge us, in general, our listeners were merry and grateful. One of the highlights of the evening was when we surrounded the old guy who always sits in front of the corner liquor store and sang "Joy to the World" and "We Wish You a Merry Christmas." He said he had not heard people caroling since the 1940s. Wow, we broke a six-decade dry spell!
Every year we attempt to rouse the hipsters at Porfolio Coffeehouse from their ennui. Once again, we were unsuccessful. The best we can ever get from these bored-with-life, young people is a momentary lifting of their eyes from their laptop screens or iPods and a tiny smirk. They're just too cool to enjoy anything. But we always look forward to this stop, as I'm sure all of you have at one time or another taken perverted pleasure in being overly upbeat around an angry soul.
Besides, lurking deep within these hipsters, as within each and every human being on the planet, is a light of love. It's just that some people are so weighted down by the travails of life or by their post-modern artifice that they are not always accessing that light. Our aim every year during the caroling is to bring that light forward in as many souls as possible.
Merry Christmas to all!
We did less caroling for brandy than we have done in previous years, but still one household poured their last dregs of Christian Brothers into the guys' Solo cups (I just sing and make merry; I don't drink), and O'Connell's gave out free shots. Though some people were too cool to indulge us, in general, our listeners were merry and grateful. One of the highlights of the evening was when we surrounded the old guy who always sits in front of the corner liquor store and sang "Joy to the World" and "We Wish You a Merry Christmas." He said he had not heard people caroling since the 1940s. Wow, we broke a six-decade dry spell!
Every year we attempt to rouse the hipsters at Porfolio Coffeehouse from their ennui. Once again, we were unsuccessful. The best we can ever get from these bored-with-life, young people is a momentary lifting of their eyes from their laptop screens or iPods and a tiny smirk. They're just too cool to enjoy anything. But we always look forward to this stop, as I'm sure all of you have at one time or another taken perverted pleasure in being overly upbeat around an angry soul.
Besides, lurking deep within these hipsters, as within each and every human being on the planet, is a light of love. It's just that some people are so weighted down by the travails of life or by their post-modern artifice that they are not always accessing that light. Our aim every year during the caroling is to bring that light forward in as many souls as possible.
Merry Christmas to all!
One Helluva Month
Yesterday was the close of one of the most challenging months of my life. My son, Aaron, counts it as his absolute worst.
It all began on Nov. 18 when I had triple bypass surgery. The aftermath of that is something I wouldn't wish on anyone--severe fluid retention, nausea, vomiting, extreme anemia, incision pain, back pain, leg pain, backed-up GI tract, dizziness. And the month closed with my mother's end-of-life suffering and the emotional drama it caused.
Aaron, of course, had to watch one of his very favorite people go through hell and back. Add to this all the extra driving and errands he had to perform in order to visit me and take care of his grandmother and me. Though he took three weeks off from his position with the Los Angeles County Museum of Art, he continued to work three nights a week at the restaurant and as a research assistant for a UCLA professor. He also had the stress and time commitment of getting graduate school applications filed on time.
If this weren't enough, his car was rear-ended, he was badly scraped in a bicycle accident, a girl who seemed perfect for him up and dropped him, and he got in a fist fight with a friend.
Aaron and I are so looking forward to a happier, healthier new year!
It all began on Nov. 18 when I had triple bypass surgery. The aftermath of that is something I wouldn't wish on anyone--severe fluid retention, nausea, vomiting, extreme anemia, incision pain, back pain, leg pain, backed-up GI tract, dizziness. And the month closed with my mother's end-of-life suffering and the emotional drama it caused.
Aaron, of course, had to watch one of his very favorite people go through hell and back. Add to this all the extra driving and errands he had to perform in order to visit me and take care of his grandmother and me. Though he took three weeks off from his position with the Los Angeles County Museum of Art, he continued to work three nights a week at the restaurant and as a research assistant for a UCLA professor. He also had the stress and time commitment of getting graduate school applications filed on time.
If this weren't enough, his car was rear-ended, he was badly scraped in a bicycle accident, a girl who seemed perfect for him up and dropped him, and he got in a fist fight with a friend.
Aaron and I are so looking forward to a happier, healthier new year!
Friday, December 18, 2009
A Visitation
Last night after Aaron went to his restaurant job, I began hearing knocking on the walls. This was definitely knocking, not the assorted noises made by the rodents that sometimes lurk in the frame of this old building. Later in the evening, objects in rooms in which I was not present began dropping. Objects that had been securely, not precariously, placed. Finally, before I went to bed, I turned off the lights in the living room, leaving on only the Christmas tree lights. As the four bulbs of the ceiling fan went off, another bout of knocking began. I smiled and asked, "Is that you, Mom?"
Immediately upon making that query, one of the bulbs in the ceiling fan turned on, then off. Interesting because this is one of those cool bulbs that comes on slowly, not all at once, as it did this time. Also interesting is that only one of the four ceiling-fan bulbs turned on, though they are all activated by one switch. I took this to be a "yes."
As an additional confirmation, Rasputin barked and was agitated. Animals know.
I spoke aloud to her in a relaxed and loving way, something that I had not been able to do when she was lying in the hospital bed, a mere shell of a human being. I said something like this:
"Mom, I know these last years and especially these last weeks and days have been difficult for you, and I'm sorry for that. I know that you were not a happy person, and I'm sorry for that too. But what I wish for you now is that you open yourself up completely and unabashedly to accepting love in a way that you never opened yourself up to it when you were on this plane of existence. I wish that you embrace God's love fully, and that it is much, much more than you had ever dreamed love could be.
"I also know you suffered from anxiety, and that is why I wish you peace. I hope that you find peace and comfort, rest for your soul.
"I wish you a peaceful, smooth, easy transition to realms of light and love. Take good care, Mom. You are free to go in peace and in love. Goodbye, Mom."
I then asked my protector, Archangel Michael, to escort her, to lead her to her next assignment.
Since then, there have been no more phenomena. I believe she has transitioned.
Immediately upon making that query, one of the bulbs in the ceiling fan turned on, then off. Interesting because this is one of those cool bulbs that comes on slowly, not all at once, as it did this time. Also interesting is that only one of the four ceiling-fan bulbs turned on, though they are all activated by one switch. I took this to be a "yes."
As an additional confirmation, Rasputin barked and was agitated. Animals know.
I spoke aloud to her in a relaxed and loving way, something that I had not been able to do when she was lying in the hospital bed, a mere shell of a human being. I said something like this:
"Mom, I know these last years and especially these last weeks and days have been difficult for you, and I'm sorry for that. I know that you were not a happy person, and I'm sorry for that too. But what I wish for you now is that you open yourself up completely and unabashedly to accepting love in a way that you never opened yourself up to it when you were on this plane of existence. I wish that you embrace God's love fully, and that it is much, much more than you had ever dreamed love could be.
"I also know you suffered from anxiety, and that is why I wish you peace. I hope that you find peace and comfort, rest for your soul.
"I wish you a peaceful, smooth, easy transition to realms of light and love. Take good care, Mom. You are free to go in peace and in love. Goodbye, Mom."
I then asked my protector, Archangel Michael, to escort her, to lead her to her next assignment.
Since then, there have been no more phenomena. I believe she has transitioned.
Thursday, December 17, 2009
Goodbye, Mom
My mother died today at the age of 88. Given her torturous last few days, she just has to be in a better place now.
It is my hope and prayer for her that her next life will be happier. I probably saw her smile a half dozen times in the 51 years I knew her. I'm not talking about the canned smiles people often give for photos, but the genuine mirthful smiles they spontaneously display when no one's snapping their picture. And not once during the past two years that she's been in California did I see her smile. I don't believe I ever heard her laugh, maybe chuckle a few times, but never laugh. And what saddens me the most is that she never got close to anyone, not her husband, not her children, not her friends. She never knew emotional honesty, much less emotional intimacy. She was always standing outside the action, observing. She approached human interaction as one might expect a foreigner or a visitor from another planet to do so--hesitantly, uncertain as to the local customs, looking for cues from others. That's why, so often she would merely say what she thought the people around her wanted to hear rather than speak her own truth, from which she seemed cut off.
Throughout my childhood and most of my adulthood, I took her distance and lack of emotional availability as a personal slight. Her disinterest in me, I must admit, and others have noted too, was more acute than with others. She quite literally did not listen to me because as she once admitted, she wasn't interested. It was only a year ago, when she went through an assessment program for seniors at the University of California Irvine Medical Center that I first learned she had a personality disorder that prevented her from getting close to anyone. How tragic.
This has been a very rough two years, caring for someone who had so little interest in me. Add to this the extreme anxiety, the complaining, the passive aggressive behavior, and the self-pity, and it is easy to see why I always left her emotionally and physically drained.
My mother was never a happy person, except the two years she lived in Europe prior to marrying and having children. As Aaron said when we were going through her Europe photographs before we moved her to California, "I sure would have liked to have known this woman." In those photos, she was smiling, ear to ear. She was dancing and bicycling and exploring and flirting. In short, she was enjoying life. But that's not the woman I ever knew. Not when I was child. Not when I was a young adult. Not when I was middle-aged.
She seemed especially unhappy in California. She expected me to be with her every day, but I had to work, I had health challenges of my own (heart attack, onset of dialysis, triple bypass surgery, many ER visits and hospitalizations), and I needed breaks from her. So often she seemed only interested in my medical issues insofar as they impacted the time I could spend with her. Even though I told her that if I didn't take care of my health, I sure wouldn't be able to take care of her, this did not register. The question was never "How are you feeling, Heidi?" It was always "When are you going to see me? When are you going to get this or do that for me?"
So I pray that my mother who has been so incredibly anxious will know peace. That my mother who has not known intimacy will find deep and abiding love, a love that penetrates her very being and that she opens herself up to feel deeply and profoundly. That my mother who always stood outside and observed will be part of the action and a full participant. That is my wish for you, Mom. Goodbye.
It is my hope and prayer for her that her next life will be happier. I probably saw her smile a half dozen times in the 51 years I knew her. I'm not talking about the canned smiles people often give for photos, but the genuine mirthful smiles they spontaneously display when no one's snapping their picture. And not once during the past two years that she's been in California did I see her smile. I don't believe I ever heard her laugh, maybe chuckle a few times, but never laugh. And what saddens me the most is that she never got close to anyone, not her husband, not her children, not her friends. She never knew emotional honesty, much less emotional intimacy. She was always standing outside the action, observing. She approached human interaction as one might expect a foreigner or a visitor from another planet to do so--hesitantly, uncertain as to the local customs, looking for cues from others. That's why, so often she would merely say what she thought the people around her wanted to hear rather than speak her own truth, from which she seemed cut off.
Throughout my childhood and most of my adulthood, I took her distance and lack of emotional availability as a personal slight. Her disinterest in me, I must admit, and others have noted too, was more acute than with others. She quite literally did not listen to me because as she once admitted, she wasn't interested. It was only a year ago, when she went through an assessment program for seniors at the University of California Irvine Medical Center that I first learned she had a personality disorder that prevented her from getting close to anyone. How tragic.
This has been a very rough two years, caring for someone who had so little interest in me. Add to this the extreme anxiety, the complaining, the passive aggressive behavior, and the self-pity, and it is easy to see why I always left her emotionally and physically drained.
My mother was never a happy person, except the two years she lived in Europe prior to marrying and having children. As Aaron said when we were going through her Europe photographs before we moved her to California, "I sure would have liked to have known this woman." In those photos, she was smiling, ear to ear. She was dancing and bicycling and exploring and flirting. In short, she was enjoying life. But that's not the woman I ever knew. Not when I was child. Not when I was a young adult. Not when I was middle-aged.
She seemed especially unhappy in California. She expected me to be with her every day, but I had to work, I had health challenges of my own (heart attack, onset of dialysis, triple bypass surgery, many ER visits and hospitalizations), and I needed breaks from her. So often she seemed only interested in my medical issues insofar as they impacted the time I could spend with her. Even though I told her that if I didn't take care of my health, I sure wouldn't be able to take care of her, this did not register. The question was never "How are you feeling, Heidi?" It was always "When are you going to see me? When are you going to get this or do that for me?"
So I pray that my mother who has been so incredibly anxious will know peace. That my mother who has not known intimacy will find deep and abiding love, a love that penetrates her very being and that she opens herself up to feel deeply and profoundly. That my mother who always stood outside and observed will be part of the action and a full participant. That is my wish for you, Mom. Goodbye.
Monday, December 14, 2009
Get Your Affairs in Order
Yesterday Aaron called those people who we figured would be interested in my mother's impending death. A few gave us messages for her. Aaron and I went to the hospital this afternoon to say goodbye. Then the tubes were taken from her throat while we waited in the chapel.
She was able to breathe on her own, a scenario I had not expected. This had been presented as an outside chance. I thought this would be the end, but the drama continues.
She is now receiving only an IV with fluid, glucose, and antibiotics, and morphine on an as-needed basis. When we left, she was still heavily sedated. I'll return tomorrow morning. My neighbor suggested I speak with the hospital ethicist. Perhaps this would give me some idea as to what to expect.
I just have to protect myself psychically from this as much as possible. The stress of this situation has caused me to lose sleep and has sent my blood sugar level skyrocketing. I have to take care of my own health.
I strongly suggest to everyone who is reading this to make sure your affairs are in order so that you and your loved ones do not go through this emotional rollercoaster ride.
1) Fill out an advanced directive.
2) Make sure as many people as possible have a copy of the directive--your doctor, your spouse, your best friend, your children, the hospital to which you would most likely be taken.
3) Appoint a power of attorney for healthcare. This is a legal document that appoints one person to make your medical decisions in case you cannot. Make sure your doctor and your hospital have the person's name and contact information on file.
4) Talk openly and honestly with your significant others about your wishes.
5) Encourage your parents and other loved ones to do the same.
Taking these steps can prevent a hospital from taking extraordinary measures that may prolong your existence but greatly diminish your quality of life and add to your suffering and the suffering of those who love you.
If I had not been my mother's power of attorney, healthcare power of attorney, guardian, and trustee, I am sure she would still be hooked up to a breathing apparatus. That's because it is legally more difficult to withdraw treatment than it is to withhold it in the first place.
She was able to breathe on her own, a scenario I had not expected. This had been presented as an outside chance. I thought this would be the end, but the drama continues.
She is now receiving only an IV with fluid, glucose, and antibiotics, and morphine on an as-needed basis. When we left, she was still heavily sedated. I'll return tomorrow morning. My neighbor suggested I speak with the hospital ethicist. Perhaps this would give me some idea as to what to expect.
I just have to protect myself psychically from this as much as possible. The stress of this situation has caused me to lose sleep and has sent my blood sugar level skyrocketing. I have to take care of my own health.
I strongly suggest to everyone who is reading this to make sure your affairs are in order so that you and your loved ones do not go through this emotional rollercoaster ride.
1) Fill out an advanced directive.
2) Make sure as many people as possible have a copy of the directive--your doctor, your spouse, your best friend, your children, the hospital to which you would most likely be taken.
3) Appoint a power of attorney for healthcare. This is a legal document that appoints one person to make your medical decisions in case you cannot. Make sure your doctor and your hospital have the person's name and contact information on file.
4) Talk openly and honestly with your significant others about your wishes.
5) Encourage your parents and other loved ones to do the same.
Taking these steps can prevent a hospital from taking extraordinary measures that may prolong your existence but greatly diminish your quality of life and add to your suffering and the suffering of those who love you.
If I had not been my mother's power of attorney, healthcare power of attorney, guardian, and trustee, I am sure she would still be hooked up to a breathing apparatus. That's because it is legally more difficult to withdraw treatment than it is to withhold it in the first place.
Something I Wouldn't Wish on Anyone
As I have really been struggling during the past few weeks since my triple bypass on Nov. 18, I have been unable to care for my mother. Even today I am so weak and tired, winded from walking a short distance. My son, Aaron, has gone over to see her and run errands for her during my absence. He was disturbed about how significantly she had declined--staring at a blank wall when he arrived, unresponsive or saying incoherent things. Saturday I drove for the first time post-op and was shocked by my mother's behavior--ranting, saying the same few words over and over, highly anxious, didn't know who I was, then screaming that I leave. I asked the staff to check her for a stroke. They said she checked out fine. The night nurse, however, felt Mom was in a bad way--unresponsive to questioning--so she called 911.
I was awoken by a call from my mother's facility around 12:30 a.m., then several calls throughout the night because info was missing from her records. As I was hooked up to the dialysis machine for 10 1/2 hours, I could not see her in the ER. Sunday morning, however, I drove to the hospital.
What I saw saddened me. She had tubes everywhere. Her eyes were rolled back. She was struggling with the restraints. It all seemed so cruel and pointless. I was crying. The nurse gave her morphine to relax, but now she just lies there with a blank stare. No response. I asked her to nod her head, squeeze my fingers, blink her eyes, but she didn't do any of this.
She has pneumonia, a sore on her foot, fever, water retention. Her blood sugar was almost 1,200, something I didn't realize was possible, as normal blood sugar is between 70 and 120.
Her wishes have always been not to be put on artificial life support, but because the facility did not provide that paperwork to the hospital, she was put on life support. I talked with the doctor, who was very kind and understanding. I said this is not what she wanted. She said Aaron and I could be with her, say our goodbyes, pass along any messages from others, and then the breathing tube could be removed. She may breathe on her own, or if not, the amount of morphine will be increased and she will drop off into a peaceful sleep from which she does not awake.
I just went through the breathing-tube ordeal with my surgery and the hours afterwards when the anesthesia was wearing off. It was absolute torture. I was frantic, trying to pull out the tube. I made a writing motion in the air, and someone brought me a pen and tablet. I did my best to write how awful this was, the feeling of the tube against my throat. I felt like I couldn't breathe. Absolute torture. And when I saw my mother struggling, I knew exactly what she was feeling.
For the last few months, my mother has given up. She gave up on walking and now is pushed in a wheelchair. She stopped dressing herself and brushing her teeth. She stopped watching TV, drawing, reading, writing letters, going out of her room. She no longer wanted to go for rides. And the most important thing in her life--chocolate--no longer holds any appeal. I bought chocolates for her before I went into the hospital on Nov. 18, and they were still there on Saturday, a month later.
This is all very hard. This has been an exceedingly difficult four weeks. I just want my mother to know peace. What she's going through now is something I wouldn't wish on anyone.
I was awoken by a call from my mother's facility around 12:30 a.m., then several calls throughout the night because info was missing from her records. As I was hooked up to the dialysis machine for 10 1/2 hours, I could not see her in the ER. Sunday morning, however, I drove to the hospital.
What I saw saddened me. She had tubes everywhere. Her eyes were rolled back. She was struggling with the restraints. It all seemed so cruel and pointless. I was crying. The nurse gave her morphine to relax, but now she just lies there with a blank stare. No response. I asked her to nod her head, squeeze my fingers, blink her eyes, but she didn't do any of this.
She has pneumonia, a sore on her foot, fever, water retention. Her blood sugar was almost 1,200, something I didn't realize was possible, as normal blood sugar is between 70 and 120.
Her wishes have always been not to be put on artificial life support, but because the facility did not provide that paperwork to the hospital, she was put on life support. I talked with the doctor, who was very kind and understanding. I said this is not what she wanted. She said Aaron and I could be with her, say our goodbyes, pass along any messages from others, and then the breathing tube could be removed. She may breathe on her own, or if not, the amount of morphine will be increased and she will drop off into a peaceful sleep from which she does not awake.
I just went through the breathing-tube ordeal with my surgery and the hours afterwards when the anesthesia was wearing off. It was absolute torture. I was frantic, trying to pull out the tube. I made a writing motion in the air, and someone brought me a pen and tablet. I did my best to write how awful this was, the feeling of the tube against my throat. I felt like I couldn't breathe. Absolute torture. And when I saw my mother struggling, I knew exactly what she was feeling.
For the last few months, my mother has given up. She gave up on walking and now is pushed in a wheelchair. She stopped dressing herself and brushing her teeth. She stopped watching TV, drawing, reading, writing letters, going out of her room. She no longer wanted to go for rides. And the most important thing in her life--chocolate--no longer holds any appeal. I bought chocolates for her before I went into the hospital on Nov. 18, and they were still there on Saturday, a month later.
This is all very hard. This has been an exceedingly difficult four weeks. I just want my mother to know peace. What she's going through now is something I wouldn't wish on anyone.
Thursday, December 03, 2009
So Tired of Feeling Lousy
It's now been more than two weeks since surgery, and I still feel lousy. I am so incredibly tired of this. I have a few hours or a half day of feeling OK once in a while, and then I'm back to utter exhaustion. Those of you who have called have commented on how good I sound. Hmmm...well, folks, projecting a positive attitude and a stiff upper lip has been my m.o. since age 13 when I was diagnosed with diabetes. I always aim to give the world a smiling face, in part because it helps me feel better too.
This has been the most difficult two weeks of my life from a physical standpoint. And now I'm entering Week 3. Just typing this makes my arms feel like they're holding 20-pound weights. My bones ache, back and neck pain wakes me up at night, my legs are still swollen and drum-tight, my belly remains distended, my feet are tingly and numb. I'm bruised and scarred. I am still haunted by nausea and dizziness. I'm severely anemic (7.8 hemoglobin, when 12 is the low end of normal), which means I'm very tired and cold. Last night I wore flannel PJs and a winter coat to bed and covered up with flannel sheets, two quilts, and a sleeping bag. I feel as if my system is continuing to be assaulted by the anesthesia, pain meds, and other drugs I've been subjected to. Everything is sluggish and uncomfortable. I'm 15 pounds over my pre-surgery weight. Frequently I'm out of breath after doing simple things.
I've heard of people feeling so much better after bypass surgery. I am so looking forward to at least feeling as well as I was prior to surgery.
Again, I am so appreciative of all who have been there for me, including Bev, who yesterday gave me a much-needed 2 1/2-hour massage.
This has been the most difficult two weeks of my life from a physical standpoint. And now I'm entering Week 3. Just typing this makes my arms feel like they're holding 20-pound weights. My bones ache, back and neck pain wakes me up at night, my legs are still swollen and drum-tight, my belly remains distended, my feet are tingly and numb. I'm bruised and scarred. I am still haunted by nausea and dizziness. I'm severely anemic (7.8 hemoglobin, when 12 is the low end of normal), which means I'm very tired and cold. Last night I wore flannel PJs and a winter coat to bed and covered up with flannel sheets, two quilts, and a sleeping bag. I feel as if my system is continuing to be assaulted by the anesthesia, pain meds, and other drugs I've been subjected to. Everything is sluggish and uncomfortable. I'm 15 pounds over my pre-surgery weight. Frequently I'm out of breath after doing simple things.
I've heard of people feeling so much better after bypass surgery. I am so looking forward to at least feeling as well as I was prior to surgery.
Again, I am so appreciative of all who have been there for me, including Bev, who yesterday gave me a much-needed 2 1/2-hour massage.
Monday, November 30, 2009
Operation Observations
Wednesday will make two weeks since I had triple bypass surgery. Still very uncomfortable and bloated. My message to everyone: Take care of yourselves. You really want to avoid this at all costs. If you're heavy, lose weight. If you're a smoker, quit. If you're a diabetic, eat right, exercise, and be the healthiest you possibly can.
A few observations:
* Hallucinations aren't always extraordinary or pleasurable. The morphine played games with me, most of them quite mundane. I hallucinated a trip to the hospital cafeteria with a doctor I don't believe I ever met. I hallucinated conversations with hospital staff. Worst of all, I hallucinated an additional five and a half hours of torture with the breathing tube stuck in my throat, hitting against my insides, making it near-impossible to breathe.
* The most memorable hallucination was of Richard Dreyfuss. Yes, someone I have never appreciated. I put him in the same category as Robin Williams, Hugh Grant, and Julia Roberts. Yuck.
But in my hallucination, Dreyfuss was my roommate. For the first night following surgery, he was on the other side of my room, generally quiet, but occasionally coughing. In the morning, he put on his 1940s newspaper man's hat, adjusted his gown, nodded, and exited. Later I discovered that I was in a private room. Funny, if I could have my choice of celebrity, he sure wouldn't have been Richard. Johnny Depp would have topped my list. But the morphine thought otherwise.
* Yes, there is plenty of incision pain, but the worst things for me have been the bloating, constipation, water retention, swelling, nausea, and vomiting attributable to the body's response to the anesthesia and the pain killers. Though I weened myself off the pain meds early on and have only had a few Tylenol during the past few days, my body is so distended from nearly 20 pounds of excess weight. If I could only shed all this, I'd be sore but otherwise fine.
* For the first time in my entire life, my breasts aren't firm and perky. Muscles were no doubt cut that have made them less alert. Hopefully, once I build my muscles back, they will spring into action once again.
* When I first started dialysis, all the nurses recommended that I wear sweat pants in order to be more comfortable. I resisted this, holding to the aesthetic notion that sweat pants are a sure sign that one has given up. Well, since surgery I have been wearing nothing but sweat pants as my jeans don't fit.
* I am sure that I have never been so exhausted as I have been during these past two weeks. Some days, even slightly turning my head or uttering a few words was dizzying. One evening I took three hours to eat dinner, falling asleep with the sandwich in my hand. This extreme weakness was emotionally exhausting as well, carrying with it the belief that I would always be like this, that things would not improve, that I couldn't take one more second of this.
* For the most part, friends have been very supportive. Though I have not heard a peep from some, this is the exception rather than the rule. I have appreciated the emails, the gifts, the cards, the prayers, the calls (though I was often too weak to talk for long), the visits, and the homemade meals. So very much appreciated.
* I am so tired of all this, so very ready to be back in the land of the living.
A few observations:
* Hallucinations aren't always extraordinary or pleasurable. The morphine played games with me, most of them quite mundane. I hallucinated a trip to the hospital cafeteria with a doctor I don't believe I ever met. I hallucinated conversations with hospital staff. Worst of all, I hallucinated an additional five and a half hours of torture with the breathing tube stuck in my throat, hitting against my insides, making it near-impossible to breathe.
* The most memorable hallucination was of Richard Dreyfuss. Yes, someone I have never appreciated. I put him in the same category as Robin Williams, Hugh Grant, and Julia Roberts. Yuck.
But in my hallucination, Dreyfuss was my roommate. For the first night following surgery, he was on the other side of my room, generally quiet, but occasionally coughing. In the morning, he put on his 1940s newspaper man's hat, adjusted his gown, nodded, and exited. Later I discovered that I was in a private room. Funny, if I could have my choice of celebrity, he sure wouldn't have been Richard. Johnny Depp would have topped my list. But the morphine thought otherwise.
* Yes, there is plenty of incision pain, but the worst things for me have been the bloating, constipation, water retention, swelling, nausea, and vomiting attributable to the body's response to the anesthesia and the pain killers. Though I weened myself off the pain meds early on and have only had a few Tylenol during the past few days, my body is so distended from nearly 20 pounds of excess weight. If I could only shed all this, I'd be sore but otherwise fine.
* For the first time in my entire life, my breasts aren't firm and perky. Muscles were no doubt cut that have made them less alert. Hopefully, once I build my muscles back, they will spring into action once again.
* When I first started dialysis, all the nurses recommended that I wear sweat pants in order to be more comfortable. I resisted this, holding to the aesthetic notion that sweat pants are a sure sign that one has given up. Well, since surgery I have been wearing nothing but sweat pants as my jeans don't fit.
* I am sure that I have never been so exhausted as I have been during these past two weeks. Some days, even slightly turning my head or uttering a few words was dizzying. One evening I took three hours to eat dinner, falling asleep with the sandwich in my hand. This extreme weakness was emotionally exhausting as well, carrying with it the belief that I would always be like this, that things would not improve, that I couldn't take one more second of this.
* For the most part, friends have been very supportive. Though I have not heard a peep from some, this is the exception rather than the rule. I have appreciated the emails, the gifts, the cards, the prayers, the calls (though I was often too weak to talk for long), the visits, and the homemade meals. So very much appreciated.
* I am so tired of all this, so very ready to be back in the land of the living.
Sunday, November 15, 2009
How I View the Practice of Medicine
This whole bypass thing has made me look at how I view the practice of medicine. It's about time, isn't it, that I ask, "What do I really feel about medicine?" since it's such a huge component of my life and has been a major player since the age of 13.
My friend Susie, who has listened to my despair regarding my situation and has given me much-needed pep talks, has often shared her views on medicine. She is a big believer. She feels that doctors and the technology that they employ are often miracle workers. Susie gave one of her kidneys to her friend Ron, and she is convinced that I too will receive not only a kidney transplant but a pancreas as well. She is firm believer in the good that medicine does in the world. Though Susie doesn't talk of God per se, perhaps a way of thinking of Susie's view is to see doctors, especially surgeons, as God's servants on earth, bringing God's healing energy to patients.
This is a beautiful image, and one I'm sure a lot of generally healthy people share. I wish I shared it, but I don't. At best I think of medicine as a small business owner no doubt thinks of the government. The government says it's here to help, but in fact any encounter with the government just means more paperwork, more taxes, more time and energy expended on tasks one would rather not do, more of one's life zapped by things one finds distasteful, unpleasant, and inconvenient. On my worst days, I think of medicine as I think of the so-called defense industry--a monster that is zapping resources, destroying lives, and is only interested in profit at all costs.
I primarily look at medicine as the force that has put restrictions on my life, not as a force that has kept me alive.
Needless to say, this is a piss-poor attitude to take. I consider medicine the default position, what I am doing until God answers my prayers. And of course I realize that it's difficult to get the best out of something that I resent and don't trust, sometimes even despise.
My friend Susie, who has listened to my despair regarding my situation and has given me much-needed pep talks, has often shared her views on medicine. She is a big believer. She feels that doctors and the technology that they employ are often miracle workers. Susie gave one of her kidneys to her friend Ron, and she is convinced that I too will receive not only a kidney transplant but a pancreas as well. She is firm believer in the good that medicine does in the world. Though Susie doesn't talk of God per se, perhaps a way of thinking of Susie's view is to see doctors, especially surgeons, as God's servants on earth, bringing God's healing energy to patients.
This is a beautiful image, and one I'm sure a lot of generally healthy people share. I wish I shared it, but I don't. At best I think of medicine as a small business owner no doubt thinks of the government. The government says it's here to help, but in fact any encounter with the government just means more paperwork, more taxes, more time and energy expended on tasks one would rather not do, more of one's life zapped by things one finds distasteful, unpleasant, and inconvenient. On my worst days, I think of medicine as I think of the so-called defense industry--a monster that is zapping resources, destroying lives, and is only interested in profit at all costs.
I primarily look at medicine as the force that has put restrictions on my life, not as a force that has kept me alive.
Needless to say, this is a piss-poor attitude to take. I consider medicine the default position, what I am doing until God answers my prayers. And of course I realize that it's difficult to get the best out of something that I resent and don't trust, sometimes even despise.
Finally Getting the Whole Story
Friday was a difficult day. As is so often the case, I found out that the whole bypass thing is much more than what it was initially billed to be. This happens quite often. I am told a rosier story than is the actual course of events, I buy into the rosier picture, and then I am given the whole story.
One of the components of this pre-op day was a consult with a cardiac surgeon. I must say that he was the best listener I have ever encountered in a doctor. He didn't trivialize my feelings, and he didn't give me "shut up" messages by telling me about how other patients have it much worse or how facing difficult tasks is everyone's lot. He actually listened, with eye contact and with empathy.
I told him that my mid-section was already "mutilated" with the insulin pump and PD tubing and transfer set. I asked him to not only think of me as a patient but as a woman and do his best to keep my chest as attractive as possible. I wondered if he could approach my heart from the side. He said that is sometimes done with single or double bypass but not with triple. He said that he had been a surgeon at Columbia, Emory, and UCLA, and had pioneered non-invasive surgery especially for women, making the cut under the breasts, but that was not an option for me either. (Unfortunately, he will not be doing my bypasses, as the method for operating on me is the run-of-the-mill M.O., he is saved for more challenging, fancier operations.) In short, I'm looking at a gash about eight inches long that will show even with a modest scoop neck. Then he told me about the two cuts below my breasts, the two shunts in my arms, the shunt in my neck, and the two IVs in my wrists.
Add to this the cuts in my legs. When I asked the young physician's assistant if it were possible to only take veins above my kneee so that I could wear skirts, she laughed and considered this strange, as if to say, "Why should someone like you be concerned about being attractive?"
So I am not feeling good about any of this. I was feeling fine about it prior to Friday's pre-op appointments, and now I feel as if it's yet another way that the medical profession is restricting, inconveniencing, ostracizing, and isolating me.
One of the components of this pre-op day was a consult with a cardiac surgeon. I must say that he was the best listener I have ever encountered in a doctor. He didn't trivialize my feelings, and he didn't give me "shut up" messages by telling me about how other patients have it much worse or how facing difficult tasks is everyone's lot. He actually listened, with eye contact and with empathy.
I told him that my mid-section was already "mutilated" with the insulin pump and PD tubing and transfer set. I asked him to not only think of me as a patient but as a woman and do his best to keep my chest as attractive as possible. I wondered if he could approach my heart from the side. He said that is sometimes done with single or double bypass but not with triple. He said that he had been a surgeon at Columbia, Emory, and UCLA, and had pioneered non-invasive surgery especially for women, making the cut under the breasts, but that was not an option for me either. (Unfortunately, he will not be doing my bypasses, as the method for operating on me is the run-of-the-mill M.O., he is saved for more challenging, fancier operations.) In short, I'm looking at a gash about eight inches long that will show even with a modest scoop neck. Then he told me about the two cuts below my breasts, the two shunts in my arms, the shunt in my neck, and the two IVs in my wrists.
Add to this the cuts in my legs. When I asked the young physician's assistant if it were possible to only take veins above my kneee so that I could wear skirts, she laughed and considered this strange, as if to say, "Why should someone like you be concerned about being attractive?"
So I am not feeling good about any of this. I was feeling fine about it prior to Friday's pre-op appointments, and now I feel as if it's yet another way that the medical profession is restricting, inconveniencing, ostracizing, and isolating me.
Wednesday, November 11, 2009
Tapping Into the God Consciousness
This morning, as I lay face up on the table at the acupuncturist's office, I received some powerful images. As is generally the case when I am lying in the dark with needles placed in the apppropriate acupoints, visions passed before my consciousness.
For the most part, these images are of people I have never met, or at least have no memory of ever having met. They are photographically detailed, but more than that, they are animated, as if the people are living and breathing in front of me. I love these beautiful moments when I dip into the river of humanity, the collective consciousness in which tiny snatches of lives lived long ago and/or far away are presented to me. I may see two Middle Eastern men drinking tea in a cafe, or a young Austrian girl with flowers in her hands, or a woman's face streaked with joyful tears, or a man in a shabby suit hopping on a bus.
These images always strike me as intimate, even though there is nothing cloaked or sexual about them. The intimacy is in the fact that I am being allowed to see these precious, seemingly inconsequential moments that compose each of our lives and have been the stuff of human existence for eons and everywhere on the planet. They strike me as incredibly lovely for their very ordinariness.
Sometimes I am given images of objects--say, a book, a shoe, a painting, a view from a window, a dinner plate. Again, I am struck by the intimacy of these encounters. These are the forgotten possessions of people who lived long ago or far away or may be living right now, participating in the vast ocean of humanity.
I once read what I take to be the most wondrous definition of God--that which lovingly remembers our lives in every last detail. Even as I write this, I am moved to tears. To think that we are not forgotten, but that every thought, every smile, every gesture, every tear is lovingly remembered.
It is during times like these in the acupuncturist's office that I feel I am tapping into the God consciousness, moments in which I, too, am lovingly remembering lives that otherwise might have been lost without a trace. What could be more intimate than this.
Today, the images were of a different sort. I saw a white-sheeted hospital bed. I could not see the person on the bed, but I felt deeply connected to whomever it was, as if it were me. All I could see were various apparati on the bed, though they didn't look like IVs or monitors. They were more colorful, more playful than ordinary medical equipment. As I beheld the bed, an intense white light surrounded its mid-section. This light was approximately three feet in diameter at its most intense. No doctors or nurses were in the room. The bed simply glowed with this white light that appeared sentient, alive, full of wisdom and love. The image disappeared, then reappeared as if to reinforce its message: I am protected, I am loved, I am richly deserving of complete and miraculous healing.
For the most part, these images are of people I have never met, or at least have no memory of ever having met. They are photographically detailed, but more than that, they are animated, as if the people are living and breathing in front of me. I love these beautiful moments when I dip into the river of humanity, the collective consciousness in which tiny snatches of lives lived long ago and/or far away are presented to me. I may see two Middle Eastern men drinking tea in a cafe, or a young Austrian girl with flowers in her hands, or a woman's face streaked with joyful tears, or a man in a shabby suit hopping on a bus.
These images always strike me as intimate, even though there is nothing cloaked or sexual about them. The intimacy is in the fact that I am being allowed to see these precious, seemingly inconsequential moments that compose each of our lives and have been the stuff of human existence for eons and everywhere on the planet. They strike me as incredibly lovely for their very ordinariness.
Sometimes I am given images of objects--say, a book, a shoe, a painting, a view from a window, a dinner plate. Again, I am struck by the intimacy of these encounters. These are the forgotten possessions of people who lived long ago or far away or may be living right now, participating in the vast ocean of humanity.
I once read what I take to be the most wondrous definition of God--that which lovingly remembers our lives in every last detail. Even as I write this, I am moved to tears. To think that we are not forgotten, but that every thought, every smile, every gesture, every tear is lovingly remembered.
It is during times like these in the acupuncturist's office that I feel I am tapping into the God consciousness, moments in which I, too, am lovingly remembering lives that otherwise might have been lost without a trace. What could be more intimate than this.
Today, the images were of a different sort. I saw a white-sheeted hospital bed. I could not see the person on the bed, but I felt deeply connected to whomever it was, as if it were me. All I could see were various apparati on the bed, though they didn't look like IVs or monitors. They were more colorful, more playful than ordinary medical equipment. As I beheld the bed, an intense white light surrounded its mid-section. This light was approximately three feet in diameter at its most intense. No doctors or nurses were in the room. The bed simply glowed with this white light that appeared sentient, alive, full of wisdom and love. The image disappeared, then reappeared as if to reinforce its message: I am protected, I am loved, I am richly deserving of complete and miraculous healing.
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