I stepped down to 5 mg. prednisone today, an accomplishment given what I have been through this month. I have lost an entire month of my life. I have memory loss of most of it except for small spots here and there--a medication so powerful that it wiped my "hard drive" fairly clean for an entire month also saved my life. For now, I believe that I will live.
I did not believe this earlier in the month. One day--I cannot remember which day now, but I was very ill and believed that if I lay down and shut my eyes, I would not open them to this world. So afraid was I that I nearly emailed a friend to chant the Heart Sutra for me because I felt in a deeply intuitive way that I would not live through the afternoon. There are no words to describe my emotional state that day: emptiness, giving-over, a sense of light. I would have died alone, the way my mother and sister died. This day I remember, a white pearl in an ocean of forgetting
I managed to get outside onto my deck at some point--afraid to lie down, I just walked out and sat in a chair. I felt more ill than I have ever been in my life. Everything looked incredibly bright and detailed. Suddenly something amazing happened: it seemed I was surrounded with dragonflies! There might have been just a few, but in my state of mind, there seemed to be dozens, green and electric blue and bright red. My sister's sign to me that she is with me is a dragonfly--something we agreed to send each other long ago, when she was still alive, as a sign that life goes on beyond this one. Her other sign to me is a feather, and at the same time the dragonflies came, several small feathers started to drift down out of the afternoon sky, slowly, as if someone gently shook out a down comforter.
I lived through that day and feel that my sister, as she did in life so many times, nudged me back from the brink of something. And I am still here. And it is good.
Wednesday, June 30, 2010
Saturday, June 26, 2010
Stepping Down
I've stepped down to 10 mg. prednisone today, an accomplishment after the level of problems with my lungs. Kali backs off, for now.
I find I have to weave activities back in slowly; the world seems full of triggers for me. I have had trauma from the times during this period that I came close to dying. I have to learn to be calm when I encounter a trigger (perfume, cigarette smoke, etc). It is understandable, this fear, given that a trigger could set off a chain reaction and I could end up in the hospital again. Getting frightened, however understandable it might be, does not help the state of my lungs and their reaction to a world full of potential asthma triggers.
People around me have been okay; one or two people have called me on trying to do so much: my tendency to try to force myself back into life despite how ill I am, like a rebellious adolescent. Part of asthma is learning to deal with denial, the same way I have had to deal with seventeen years' worth of dealing with lupus: my life is forever altered from this time. I have been called on the fact that I do not put my health and recovery first and foremost--I have never been very good at that, but now it is crucial.
What is my lesson from this time? That my body is still strong and knows the way to fight and get well again. That I have to remember I am part of a community, a family; that I can't just dump everything on my partner and immediate circle, that I have to extend outwards for support. And gratitude goes a long way: gratitude for still being here, for not dying, for this day and this moment, always a gift.
I find I have to weave activities back in slowly; the world seems full of triggers for me. I have had trauma from the times during this period that I came close to dying. I have to learn to be calm when I encounter a trigger (perfume, cigarette smoke, etc). It is understandable, this fear, given that a trigger could set off a chain reaction and I could end up in the hospital again. Getting frightened, however understandable it might be, does not help the state of my lungs and their reaction to a world full of potential asthma triggers.
People around me have been okay; one or two people have called me on trying to do so much: my tendency to try to force myself back into life despite how ill I am, like a rebellious adolescent. Part of asthma is learning to deal with denial, the same way I have had to deal with seventeen years' worth of dealing with lupus: my life is forever altered from this time. I have been called on the fact that I do not put my health and recovery first and foremost--I have never been very good at that, but now it is crucial.
What is my lesson from this time? That my body is still strong and knows the way to fight and get well again. That I have to remember I am part of a community, a family; that I can't just dump everything on my partner and immediate circle, that I have to extend outwards for support. And gratitude goes a long way: gratitude for still being here, for not dying, for this day and this moment, always a gift.
Friday, June 25, 2010
old friends
I was sitting on the stairs of the home I live in, crying because someone I know has deeply
Tuesday, June 15, 2010
Opening the Heart Lotus
If you have been following this blog, you will find that I have been dealing with asthma and an intense course of prednisone therapy to deal with it. It is likely I would not be alive right now without this course of treatment, or at least very seriously impaired.
Prednisone is an extreme medication that quickly brings down life-threatening inflammation. At the same time, it can cause very serious side effects to the body and mind. It is used as a form of chemotherapy in some cancers--since cancer is unfortunately and sadly the disease we have to deal with often as a culture, perhaps it might be easier to remember that drugs used in chemotherapy are by nature very intense, with devastating side effects, and prednisone is no exception.
I am overwhelmed with love from many sectors--prayer, good wishes, loving kindness, suggestionns for dietary changes,people buying gluten free products for me to eat in their homes (sometimes a lot, which is extremely sweet and touching) and friends making commitments to not wear fragrances around me (an extreme asthma trigger). It is very hard for me when I plan to go out and have a fun night and then can't participate when someone is wearing perfume or smoking--and even worse when a cascade of triggers occurs and I end up in the hospital. And it's not like people are not being harmed, albeit silently, by the same triggers--it's just that my body reacts and shows it.
At the same time I have been treated lovingly, the people closest to me have had to deal with the most devastating side effects of high dose prednisone, the emotional effects on me. I do not sleep on prednisone; since May 31st, I have been averaging three to four hours sleep a night. Last night was the first night in sixteen days that I have got a full night's sleep. In addition, the prednisone revs me up and if I try to do normal activities like drive around, run errands, shop, participate in writing groups, etc., my brain on prednisone gets unbelievably wired and I call it "having a brainstorm." And I have come to call my treatment "dancing with Kali." It is hard on people to see and experience these emotional changes, and since they are intense and immediate, probably hard to remember that "this too shall pass."
As the prednsone dosage decreases, the side effects lessen, but not what it reveals about the "compassion capacity" of people. Devastating illness and treatment in a loved one is an opportunity and a journey, a means to walk the talk about compassion--it's one thing to have rehearsed the vocabulary of loving compassion because it sounds really good and brings you attention for being able to parrot it--and a far different thing to reach for strength, open the heart, and really practice it. I sadly learned this the hard way when I set too many boundaries with my sister during the course of a long and very difficult illness--because part of me did not believe my beloved older sister could die, and she did. She was my strong warrior sister and I believed she could vanquish anything simply by willing it for herself--and in my selfishness and fear, I lost precious time with her. It is very hard to learn a lesson in compassion and one's shortcomings and emotional deficits the hard way like this. I would not wish it on anyone. It is one of my greatest regrets in a chain of many.
I plan to get a new bumpersticker today to go with the "follow your bliss" already on my car, a quote from Thich Nhat Hahn: "We are here to awaken from the illusion of our separateness." And when I was very sick last week or so (timelines are gone right now from the memory loss) I had the revelation that one of the purposes of our life on earth is to "hold each other up." If we cannot be there for a loved one who is ill or struggling, if we fail to take a second to see things from the perspective of the other person and try to realize how difficult it is for them and it is not "always about us," or participate in their joys and sorrows, how can we be there for anything in life? The capacity for love and compassion comes from expanding the heart, even in difficult times. The heart is a lotus that shows its beauty most when it is fully open.
Prednisone is an extreme medication that quickly brings down life-threatening inflammation. At the same time, it can cause very serious side effects to the body and mind. It is used as a form of chemotherapy in some cancers--since cancer is unfortunately and sadly the disease we have to deal with often as a culture, perhaps it might be easier to remember that drugs used in chemotherapy are by nature very intense, with devastating side effects, and prednisone is no exception.
I am overwhelmed with love from many sectors--prayer, good wishes, loving kindness, suggestionns for dietary changes,people buying gluten free products for me to eat in their homes (sometimes a lot, which is extremely sweet and touching) and friends making commitments to not wear fragrances around me (an extreme asthma trigger). It is very hard for me when I plan to go out and have a fun night and then can't participate when someone is wearing perfume or smoking--and even worse when a cascade of triggers occurs and I end up in the hospital. And it's not like people are not being harmed, albeit silently, by the same triggers--it's just that my body reacts and shows it.
At the same time I have been treated lovingly, the people closest to me have had to deal with the most devastating side effects of high dose prednisone, the emotional effects on me. I do not sleep on prednisone; since May 31st, I have been averaging three to four hours sleep a night. Last night was the first night in sixteen days that I have got a full night's sleep. In addition, the prednisone revs me up and if I try to do normal activities like drive around, run errands, shop, participate in writing groups, etc., my brain on prednisone gets unbelievably wired and I call it "having a brainstorm." And I have come to call my treatment "dancing with Kali." It is hard on people to see and experience these emotional changes, and since they are intense and immediate, probably hard to remember that "this too shall pass."
As the prednsone dosage decreases, the side effects lessen, but not what it reveals about the "compassion capacity" of people. Devastating illness and treatment in a loved one is an opportunity and a journey, a means to walk the talk about compassion--it's one thing to have rehearsed the vocabulary of loving compassion because it sounds really good and brings you attention for being able to parrot it--and a far different thing to reach for strength, open the heart, and really practice it. I sadly learned this the hard way when I set too many boundaries with my sister during the course of a long and very difficult illness--because part of me did not believe my beloved older sister could die, and she did. She was my strong warrior sister and I believed she could vanquish anything simply by willing it for herself--and in my selfishness and fear, I lost precious time with her. It is very hard to learn a lesson in compassion and one's shortcomings and emotional deficits the hard way like this. I would not wish it on anyone. It is one of my greatest regrets in a chain of many.
I plan to get a new bumpersticker today to go with the "follow your bliss" already on my car, a quote from Thich Nhat Hahn: "We are here to awaken from the illusion of our separateness." And when I was very sick last week or so (timelines are gone right now from the memory loss) I had the revelation that one of the purposes of our life on earth is to "hold each other up." If we cannot be there for a loved one who is ill or struggling, if we fail to take a second to see things from the perspective of the other person and try to realize how difficult it is for them and it is not "always about us," or participate in their joys and sorrows, how can we be there for anything in life? The capacity for love and compassion comes from expanding the heart, even in difficult times. The heart is a lotus that shows its beauty most when it is fully open.
Monday, June 14, 2010
Thoughts While Dancing With Kali
I am doing better but am saddened by the reactions of certain people as I endure high-dose steroids to control asthma. The emotional side effects, which are hard to manage at the level I am taking them, seem to be all about the effect it has on THEM (I mean, "expectations are preprogrammed resentments," but sometimes serious illness in people do a great deal to show the mettle of others). The irony is that the most difficult reactions from people (re:: emotional side effects from a drug I have to take to save my life right now) are from the sector of the people who call themselves the most compassionate and groove on saving the environment. It's crucial to be dedicated to solving our horrific environmental problems, but to me it is hypocrisy to cry over the plight of dolphins, spout off about how compassionate you are and how you see the divine spark in everyone, plaster your house with spiritual books and icons--and then treat poorly someone in one's life who is ill and going through medical treatment.
I have an action plan of trying to stay in calm quiet rooms and stuff right now, doing quiet organizing tasks because predisone makes my brain want to organize things (my Itunes playlists never looked so great). I find that I feel worse if I try to go out and do anything but very minimal tasks. The world will be there when I get back, I tell myself.
I think that one problem with illnesses like lupus and asthma is that they are periodic. There are months, even years, I can feel perfectly well and then something will strike out of the blue. Perhaps that is the one thing that is frigtening to others--that a periodic illness which emerges like a dragon from a cave from time to time is a reminder of mortality. People do not want to be reminded of this, especially people who should by this age be understanding that when people get sick, it is because bodies get sick and sometimes the medical treatments needed to control it can be difficult. When a loved one is ill, it is a chance to really exercise love and compassion--and boundaries, yes, but not to make the other person feel bad.
I was also reminded by a dear young friend to stop saying negative things about my treament, such as saying it's like being on speed (which I have never taken, of course; I just assume that because predisone feels like I have had 400 espressos all at once)--that to say negative things about the treatment is to put up some resistance to taking it in. So I am calling predisone "dancing with Kali" instead.
The truth is, we will all have to deal with health issues on some level, whether it is in a lover, spouse, friend, parent, or child, and when someone is seriously ill, as I am right now, it is a chance to exercise the concept that "we are here to awaken from the illusion of our separateness." When your loved one is "dancing with Kali," it is important I think to remember some good slogans such as "this too shall pass" and that healing is a journey.
I have an action plan of trying to stay in calm quiet rooms and stuff right now, doing quiet organizing tasks because predisone makes my brain want to organize things (my Itunes playlists never looked so great). I find that I feel worse if I try to go out and do anything but very minimal tasks. The world will be there when I get back, I tell myself.
I think that one problem with illnesses like lupus and asthma is that they are periodic. There are months, even years, I can feel perfectly well and then something will strike out of the blue. Perhaps that is the one thing that is frigtening to others--that a periodic illness which emerges like a dragon from a cave from time to time is a reminder of mortality. People do not want to be reminded of this, especially people who should by this age be understanding that when people get sick, it is because bodies get sick and sometimes the medical treatments needed to control it can be difficult. When a loved one is ill, it is a chance to really exercise love and compassion--and boundaries, yes, but not to make the other person feel bad.
I was also reminded by a dear young friend to stop saying negative things about my treament, such as saying it's like being on speed (which I have never taken, of course; I just assume that because predisone feels like I have had 400 espressos all at once)--that to say negative things about the treatment is to put up some resistance to taking it in. So I am calling predisone "dancing with Kali" instead.
The truth is, we will all have to deal with health issues on some level, whether it is in a lover, spouse, friend, parent, or child, and when someone is seriously ill, as I am right now, it is a chance to exercise the concept that "we are here to awaken from the illusion of our separateness." When your loved one is "dancing with Kali," it is important I think to remember some good slogans such as "this too shall pass" and that healing is a journey.
Tuesday, June 08, 2010
very slow recovery
My lungs continue to heal; I feel like a person who has fought a forest fire without oxygen or a mask. I am extremely limited in what I can do this week and will not be returning to dance this week, and very limited next. I have had my immune system knocked out by high-dose steroids and so am trying not to be around people too much this week.
But June 7th was my birthday and I am happy about that. I love being in my 50s and have no problem with it. But I do hope that my health improves! I have come to contemplate breathing as the force of life itself, and am grateful when it comes with ease for me.
But June 7th was my birthday and I am happy about that. I love being in my 50s and have no problem with it. But I do hope that my health improves! I have come to contemplate breathing as the force of life itself, and am grateful when it comes with ease for me.
Friday, June 04, 2010
Asthma improving
My asthma seems to be improving on the 80 mg. I have been taking since the IV steroids in the hospital (125 mg., a few days after an 80 mg injection of solumedrol). My body feels like a rag doll that has had all the stuffing pulled out of it. Asthma attacks like the ones I have been going through for the last year truly tire me out. I have not been able to do much this week except get through each day the best I can. At least I do not feel my lungs are lined with glass and that no air can get in--because that is what my attacks are like. And my peak flow is up). I will be on steroids for some time. I do not like to take them, but my lungs cannot heal without this treatment.
I have come full circle as I recuperate to reading some wonderful books by Dr. Bernie Siegel; I used to read these and listen to his healing audiotapes for many years when I was very ill with lupus. I am reassured by his kind words. He is truly a healer (my sister came to know him personally and we corresponded a little after her death). One thing that struck me in my reading today is, "Live within the knowledge of your mortality."
We are all so blessed with time on this earth, but such a short time in the grand scheme of things. As I look out the window of my house, I see redwood trees that were there the day I bought it; they were there before the house was built; if all goes well for them, they will be here long after I am gone. I am the more temporary part of my landscape equation!
The important part today is, for me, to be grateful for my day and to try to create 24 hours of which I can be proud at bedtime--whether that is because I chose to speak kindly to another when I could have easily chosen otherwise, slowed down, smiled at someone, took care of something regarding my health, chose not to worry. That is what I can do with my precious 24 hours.
I have come full circle as I recuperate to reading some wonderful books by Dr. Bernie Siegel; I used to read these and listen to his healing audiotapes for many years when I was very ill with lupus. I am reassured by his kind words. He is truly a healer (my sister came to know him personally and we corresponded a little after her death). One thing that struck me in my reading today is, "Live within the knowledge of your mortality."
We are all so blessed with time on this earth, but such a short time in the grand scheme of things. As I look out the window of my house, I see redwood trees that were there the day I bought it; they were there before the house was built; if all goes well for them, they will be here long after I am gone. I am the more temporary part of my landscape equation!
The important part today is, for me, to be grateful for my day and to try to create 24 hours of which I can be proud at bedtime--whether that is because I chose to speak kindly to another when I could have easily chosen otherwise, slowed down, smiled at someone, took care of something regarding my health, chose not to worry. That is what I can do with my precious 24 hours.
Wednesday, June 02, 2010
asthma again
My dear readers, please be patient with me as I post about my ongoing struggles with asthma. I had two bouts in the last few days which required trips to the hospital, high amounts of IV steroids, breathing treatments, more adjustment of my meds, and a long-term steroid course to try and get my lungs to eliminate the inflammation. Right now, I can no longer handle tobacco smoke, petroleum-based perfumes from anything, including shampoo, housecleaning products (hurrah for Dr. Bronner's soaps and baking soda), or basically any artifical scent or fumes, and cannot go outside for more than about fifteen minutes because even going outside triggers the attacks. I can no longer work or sleep in a room without a HEPA air purifier, so I have ordered one for my home and my bedroom and will probably get one for my office at work, too.
My doctor has upgraded (downgraded?) my asthma to "chronic". Hopefully my new meds will help. I cannot continue on the prednisone doses I am receiving without eventual long-term damage in other ways.
I keep hoping things will get better. I used to love things like perfumes, and now only use essential oils--which are much nicer and actually feel very healing to me.
But on top of it all--hey, I got two classes for next semester, English 1A. BTW, it's not a downgrade from Intro to Creative Writing--the department rotates the class amongst the faculty, and I'll likely have another turn next year.
I guess my thought for today is--no one and nothing lives forever. I did sense a strange shift in me in the last few days, that it was time to stop acquiring things because I can take none of this with me, that I at least need to really consider the things I add to my life. It feels deeply appropriate, actually. We take nothing, not even our bodies, on the great adventure. And that is okay with me. And whether it is true or not that some great change is coming to me, there is no question it will arrive one day--so I remind myself that every day is a jewel and a gift, and I can learn to dance with joy on the edge of the abyss. In Tarot, the Fool who steps off the cliff into the unknown often is depicted carrying a white rose he has received from the Shekinah; she gave it to him at the crest of the Tree of Life in the Garden of Eden. It has always been my favorite image on the card. The Fool is always depicted as smiling before he steps into a reality that is unseen, but can be trusted on an intuitive level.
Namaste!
My doctor has upgraded (downgraded?) my asthma to "chronic". Hopefully my new meds will help. I cannot continue on the prednisone doses I am receiving without eventual long-term damage in other ways.
I keep hoping things will get better. I used to love things like perfumes, and now only use essential oils--which are much nicer and actually feel very healing to me.
But on top of it all--hey, I got two classes for next semester, English 1A. BTW, it's not a downgrade from Intro to Creative Writing--the department rotates the class amongst the faculty, and I'll likely have another turn next year.
I guess my thought for today is--no one and nothing lives forever. I did sense a strange shift in me in the last few days, that it was time to stop acquiring things because I can take none of this with me, that I at least need to really consider the things I add to my life. It feels deeply appropriate, actually. We take nothing, not even our bodies, on the great adventure. And that is okay with me. And whether it is true or not that some great change is coming to me, there is no question it will arrive one day--so I remind myself that every day is a jewel and a gift, and I can learn to dance with joy on the edge of the abyss. In Tarot, the Fool who steps off the cliff into the unknown often is depicted carrying a white rose he has received from the Shekinah; she gave it to him at the crest of the Tree of Life in the Garden of Eden. It has always been my favorite image on the card. The Fool is always depicted as smiling before he steps into a reality that is unseen, but can be trusted on an intuitive level.
Namaste!
Subscribe to:
Posts (Atom)