Dear friends and family,
We've been so busy we haven't posted updates for quite a while. Plus, I was shy about figuring out how to do posts! Now there are three new ones all at once that we’d started over a period of time.
Much of what was in the last posting, for July, is still valid, sorry to say. But we were very fortunate to arrange an early August face-to-face meeting between Molly a Lyme expert and consultant from out of state.
Consequently he and our local doctor who we have consulted in the past, have put together a new plan for treatment, which we are beginning to carry out in an orderly manner as befits Molly’s sensitive state--frustrating though it is, not to implement everything at once!
Love to all, and thank you so much for your support,
Marilyn
P.S. from Molly: As I say below, I haven’t been able to retrieve e-mails sent to my address since mid-June, and I miss those communications. Please do send future e-mails to the address you find on the e-mail notification about the new entries. I look forward to hearing from you, and to your comments on the blog (just say if you would like us to post your e-mails on the blog for you).
Tuesday, August 18, 2009
Monday, August 17, 2009
Update on Molly, July
Dear family and friends,
I wish I had better news to report. Molly is having a very difficult time, because of deterioration in her physical vigor and increase in her neurological symptoms, especially sensitivities of all kinds. It is very tricky treating Lyme disease, although she is able to take many supplements meant to counteract various aspects of her troubles, as well as attacking the spirochetes themselves.
A principal obstacle to improvement is her sensory sensitivities not only to sound, but to light and motion. Most recently she is suffering from vertigo. Sound sensitivity (hyperacusis) is said to be suffered by almost half of Lyme victims to greater or lesser degree, but information about treatment is very difficult to find. It makes the herxes (symptoms resulting from the toxins released by the dying spirochetes) terrible to deal with, even though they are “only” intensifications of her usual symptoms. A related symptom is panic attacks that awaken her out of the blue and make rest difficult. What an awful disease Lyme is– you have to decide how much torment you can stand at a given time in order to treat it.
The delightful early summer evening drives we were having near Santa Fe, as described in Molly’s and my entries above, have been curtailed because of a mistake one day in going out while the sun, though low, was still bright as only sun in New Mexico can be :-). This set Molly back in her tolerance for not only light but sound and motion as well. Now she is confined to a darkened room, except for evening sits on our portal watching the sky. We fantasize that we are the deck of an ocean liner.
We hope to report on new developments in her treatments before long.
One result of Molly’s being at our house is that she doesn’t have access to a computer, since ours are on the second floor. She is also having more trouble writing--even for me to transcribe into e-mails--so she asks me to give her regrets for not being able to communicate with family and friends as much as she would like to. But please keep the blog comments and e-mails coming! You can post comments to the blog following the instructions in the right column. Or just use my e-mail address (on my e-mail notification about the new posts) since Molly isn’t able to pick up her own e-mail, and say whether or not you want your message posted.
Love from Marilyn and Frank
Molly says:
I do wish to add that I have not been receiving e-mail since mid-June. So, I’m not ignoring you, if you wrote! I was in the middle of so many delicious email conversations that I miss terribly–some loving, supportive, disclosing and honest, some deep and existential, others deliciously newsy and light, some hilariously offbeat, some more intermittent but heartful and connected. Facebook was a wonderful discovery as a way to connect with people as well. I miss you all!
I wish I had better news to report. Molly is having a very difficult time, because of deterioration in her physical vigor and increase in her neurological symptoms, especially sensitivities of all kinds. It is very tricky treating Lyme disease, although she is able to take many supplements meant to counteract various aspects of her troubles, as well as attacking the spirochetes themselves.
A principal obstacle to improvement is her sensory sensitivities not only to sound, but to light and motion. Most recently she is suffering from vertigo. Sound sensitivity (hyperacusis) is said to be suffered by almost half of Lyme victims to greater or lesser degree, but information about treatment is very difficult to find. It makes the herxes (symptoms resulting from the toxins released by the dying spirochetes) terrible to deal with, even though they are “only” intensifications of her usual symptoms. A related symptom is panic attacks that awaken her out of the blue and make rest difficult. What an awful disease Lyme is– you have to decide how much torment you can stand at a given time in order to treat it.
The delightful early summer evening drives we were having near Santa Fe, as described in Molly’s and my entries above, have been curtailed because of a mistake one day in going out while the sun, though low, was still bright as only sun in New Mexico can be :-). This set Molly back in her tolerance for not only light but sound and motion as well. Now she is confined to a darkened room, except for evening sits on our portal watching the sky. We fantasize that we are the deck of an ocean liner.
We hope to report on new developments in her treatments before long.
One result of Molly’s being at our house is that she doesn’t have access to a computer, since ours are on the second floor. She is also having more trouble writing--even for me to transcribe into e-mails--so she asks me to give her regrets for not being able to communicate with family and friends as much as she would like to. But please keep the blog comments and e-mails coming! You can post comments to the blog following the instructions in the right column. Or just use my e-mail address (on my e-mail notification about the new posts) since Molly isn’t able to pick up her own e-mail, and say whether or not you want your message posted.
Love from Marilyn and Frank
Molly says:
I do wish to add that I have not been receiving e-mail since mid-June. So, I’m not ignoring you, if you wrote! I was in the middle of so many delicious email conversations that I miss terribly–some loving, supportive, disclosing and honest, some deep and existential, others deliciously newsy and light, some hilariously offbeat, some more intermittent but heartful and connected. Facebook was a wonderful discovery as a way to connect with people as well. I miss you all!
Written in June, posted in August (sorry!)
Dear Molly,
I really like the name of your blog, Maple Tree Warrior. It’s fierce and peaceful at the same time. How sad that the tree you loved is physically gone. But you are carrying it forward in your heart!
Your Lyme disease has subtle ties to nature. A bad part is that it’s a symptom of changes in our world caused by global warming. As you know, with warmer winters bacteria are surviving in greater numbers than ever. Lyme disease has existed for a long time, but now it is causing real havoc to lives like never before.
Another negative tie to nature is that Lyme often causes extreme environmental sensitivities, as you know only too well. Some of your indications of trouble were, early on, severe reactions to paint, outgassing from gym mats, and more recently everything from pesticide and skin products to purportedly harmless building materials... An ongoing saga.
Some of that has brought you temporarily from your cozy house that you put so much thought, work and love into, to our house. We love having you here, but we know that it’s more difficult for you to negotiate with the tough Saltillo tile floors and highway noise in the distance. And it’s hard for you not being in close email contact with your friends and family. A good thing, though, is the hilarity we share at mealtimes on your good days, and the monk-like silent communion on your not-so-good days. Also, as I write this on the 4th of July, we seldom hear fireworks here, in contrast to your own kid-friendly neighborhood.
Another good thing about your being at our house is that it has started the three of us driving New Mexico backroads and helping you to reconnect with the countryside, using your camera as well as (as much as possible) your senses. Sadly, with the sound and light sensitivities you’ve developed, you need your ear plugs, noise-cancelling headphones and two pairs of reflective sunglasses. It’s hard to see you have to buffer yourself from the outdoors you have so long loved–bird songs, the sound of wind and rain, much less thunderstorms. And for you not to be able to enter the wilderness in the same way, except by digging your feet into the earth when we drive up the hill to watch the sunset.
But driving we’ve enjoyed geological formations and striations; the spectacular and unlikely flourishing of cactus flowers thanks to this unusually moist season; the farmer whose wife’s family has lived in the town of Stanley for 100 years showing us the mysterious old farm tools they lovingly preserved by arranging on weathered boards, and describing the lost sense of community since the old Stanley store closed. Then there is the little church whose touching cemetery holds timeless stone crosses, each a distinctive and compelling shape; the achingly fresh and lovingly tended descanso (roadside memorial) near our house for four teenagers killed by a drunk driver; and the hidden pond with the majestic, venerable oaks and cottonwoods drinking from it.
Trees-- I loved Deborah Post’s comment posted on your blog, with the Tagore poem about trees’ relationship to the earth and sky; and the “rowandell” email address your imaginative cousin Pym used to have, referring to those lacy trees and the Elves’ home in Tolkien’s Middle Earth. We had a rowan tree at our place in upstate New York, too, although we called it by its other name, mountain ash. The Ents from Tolkien have worked their way into our drawings and vocabulary as allies as well.
I’ve told you about the mimosa tree in my grandmother’s yard in Oklahoma City when I was growing up. It was my magical playhouse, shelter and throne, graced with delicate pink blossoms–my “powder puff” tree. {drawing?}
Pop and I want to wish you strength from all such trees,
Worlds of love, Mom
Thank you, Mom, for this lovely entry.
It has been a great comfort to be at your house, though hard to have my own sanctuary toxic. But we have had some fun and a lot of laughs! (Not that there haven’t been tense moments too, of course. How could there not? We have grown from those too.) I have enjoyed our evening sits outside, including my first sighting of the Milky Way in longer than I care to contemplate, complete with shooting star. There have also been some family firsts, for instance the breakdown of the decades-long taboo against the use of foul language in front of one another. My father was the last to fall. My first instinct was to immediately call my sister, “Can you believe it? Papa said, ‘#*!&xs!!’”??
Another new activity has arisen from my taking to the writing of haikus (brevity having a sudden new allure, since writing is more difficult). Sometimes we compose haikus together, one person thinking up the first phrase, and all of us coming up with the second and comparing our creations.
And then there’s sitting together in meditation. Who would have thunk. All in all, we have gotten to know each other a lot more.
Thank you for writing about trees, Mom. It’s so soothing just to talk about them. They have also been a major subject of my picture taking, thanks to you and Pop driving me around. Since I can’t leave the passenger seat, we call Pop the “dolly driver,” as I issue commands to go forward or back a few feet, and Mom the technical adviser, since she is a photographer in her own right and can read the camera manual, which I cannot.
I thought of a couple of things to add about trees. I thought of a healer who once advised me during a time of stress to go into nature, commenting, “I’ve never met a tree that agreed with my neurosis.” How true!
I also thought of how many “pests” are the result of ecosystems out of balance. They have their place in a functioning ecosystem but something tips the balance and they take over. Another example of this, and devastating to all of us here in Northern New Mexico, is the decimation of the pinon trees a few years ago. Our dear tree man, Rich (who was heart-breakingly downcast during that period, despite all the business it gave him cutting down dead trees), was at my house a few weeks ago looking at my own struggling pinons, and discussing how to rid them of needle scale. He commented that he made peace with all his “pest”-killing by thinking of it as helping them end their bad karma, so they might come back as higher life forms, or, in his words, as “progressives.”
I have thought of that often with regard to all the spirocide I have been doing. That is perhaps a good segue to a little medical update, which I will mostly let you (Mom) take over. I will say this though: The cure is worse than the disease! Those spiros release nasty neurotoxins during their death throes–whoa! It has been nothing short of hellish. Maybe one day I’ll get really honest about the experience. So far I’m sorry to say the results have been subtle if any.
Since Mom and I started this entry, a lot of uncertain things have happened medically. My neurological symptoms have worsened considerably, and my treatment team is in disagreement about what to do. It’s scary to have one practitioner tell you you’re in danger if you don’t take a particular substance today and another tell you you’re endangering yourself if you do, and to really feel like you don’t have the where-with-all to decide.
Now I am truly thankful to be at Mom and Pop’s house, as I really require a monopoly of their time and attention and support right now. I struggle a lot with guilt about this, as they will testify.
I’ll let Mom take over from here and say more, but first I want to express my regret at not being able to go on and on with tributes to those who have devoted enormous heart and effort to helping me in extraordinary ways. I hope to get to this as soon as possible. I’ll just say for now it’s a wondrous display to watch the various ways that creation (human beings) express(es) love, each a different flavor of gift. I am grateful for it all, and look forward to observing that beautiful display from another standpoint and even more so as a fuller participant.
Love to you all,
Molly
I really like the name of your blog, Maple Tree Warrior. It’s fierce and peaceful at the same time. How sad that the tree you loved is physically gone. But you are carrying it forward in your heart!
Your Lyme disease has subtle ties to nature. A bad part is that it’s a symptom of changes in our world caused by global warming. As you know, with warmer winters bacteria are surviving in greater numbers than ever. Lyme disease has existed for a long time, but now it is causing real havoc to lives like never before.
Another negative tie to nature is that Lyme often causes extreme environmental sensitivities, as you know only too well. Some of your indications of trouble were, early on, severe reactions to paint, outgassing from gym mats, and more recently everything from pesticide and skin products to purportedly harmless building materials... An ongoing saga.
Some of that has brought you temporarily from your cozy house that you put so much thought, work and love into, to our house. We love having you here, but we know that it’s more difficult for you to negotiate with the tough Saltillo tile floors and highway noise in the distance. And it’s hard for you not being in close email contact with your friends and family. A good thing, though, is the hilarity we share at mealtimes on your good days, and the monk-like silent communion on your not-so-good days. Also, as I write this on the 4th of July, we seldom hear fireworks here, in contrast to your own kid-friendly neighborhood.
Another good thing about your being at our house is that it has started the three of us driving New Mexico backroads and helping you to reconnect with the countryside, using your camera as well as (as much as possible) your senses. Sadly, with the sound and light sensitivities you’ve developed, you need your ear plugs, noise-cancelling headphones and two pairs of reflective sunglasses. It’s hard to see you have to buffer yourself from the outdoors you have so long loved–bird songs, the sound of wind and rain, much less thunderstorms. And for you not to be able to enter the wilderness in the same way, except by digging your feet into the earth when we drive up the hill to watch the sunset.
But driving we’ve enjoyed geological formations and striations; the spectacular and unlikely flourishing of cactus flowers thanks to this unusually moist season; the farmer whose wife’s family has lived in the town of Stanley for 100 years showing us the mysterious old farm tools they lovingly preserved by arranging on weathered boards, and describing the lost sense of community since the old Stanley store closed. Then there is the little church whose touching cemetery holds timeless stone crosses, each a distinctive and compelling shape; the achingly fresh and lovingly tended descanso (roadside memorial) near our house for four teenagers killed by a drunk driver; and the hidden pond with the majestic, venerable oaks and cottonwoods drinking from it.
Trees-- I loved Deborah Post’s comment posted on your blog, with the Tagore poem about trees’ relationship to the earth and sky; and the “rowandell” email address your imaginative cousin Pym used to have, referring to those lacy trees and the Elves’ home in Tolkien’s Middle Earth. We had a rowan tree at our place in upstate New York, too, although we called it by its other name, mountain ash. The Ents from Tolkien have worked their way into our drawings and vocabulary as allies as well.
I’ve told you about the mimosa tree in my grandmother’s yard in Oklahoma City when I was growing up. It was my magical playhouse, shelter and throne, graced with delicate pink blossoms–my “powder puff” tree. {drawing?}
Pop and I want to wish you strength from all such trees,
Worlds of love, Mom
Thank you, Mom, for this lovely entry.
It has been a great comfort to be at your house, though hard to have my own sanctuary toxic. But we have had some fun and a lot of laughs! (Not that there haven’t been tense moments too, of course. How could there not? We have grown from those too.) I have enjoyed our evening sits outside, including my first sighting of the Milky Way in longer than I care to contemplate, complete with shooting star. There have also been some family firsts, for instance the breakdown of the decades-long taboo against the use of foul language in front of one another. My father was the last to fall. My first instinct was to immediately call my sister, “Can you believe it? Papa said, ‘#*!&xs!!’”??
Another new activity has arisen from my taking to the writing of haikus (brevity having a sudden new allure, since writing is more difficult). Sometimes we compose haikus together, one person thinking up the first phrase, and all of us coming up with the second and comparing our creations.
And then there’s sitting together in meditation. Who would have thunk. All in all, we have gotten to know each other a lot more.
Thank you for writing about trees, Mom. It’s so soothing just to talk about them. They have also been a major subject of my picture taking, thanks to you and Pop driving me around. Since I can’t leave the passenger seat, we call Pop the “dolly driver,” as I issue commands to go forward or back a few feet, and Mom the technical adviser, since she is a photographer in her own right and can read the camera manual, which I cannot.
I thought of a couple of things to add about trees. I thought of a healer who once advised me during a time of stress to go into nature, commenting, “I’ve never met a tree that agreed with my neurosis.” How true!
I also thought of how many “pests” are the result of ecosystems out of balance. They have their place in a functioning ecosystem but something tips the balance and they take over. Another example of this, and devastating to all of us here in Northern New Mexico, is the decimation of the pinon trees a few years ago. Our dear tree man, Rich (who was heart-breakingly downcast during that period, despite all the business it gave him cutting down dead trees), was at my house a few weeks ago looking at my own struggling pinons, and discussing how to rid them of needle scale. He commented that he made peace with all his “pest”-killing by thinking of it as helping them end their bad karma, so they might come back as higher life forms, or, in his words, as “progressives.”
I have thought of that often with regard to all the spirocide I have been doing. That is perhaps a good segue to a little medical update, which I will mostly let you (Mom) take over. I will say this though: The cure is worse than the disease! Those spiros release nasty neurotoxins during their death throes–whoa! It has been nothing short of hellish. Maybe one day I’ll get really honest about the experience. So far I’m sorry to say the results have been subtle if any.
Since Mom and I started this entry, a lot of uncertain things have happened medically. My neurological symptoms have worsened considerably, and my treatment team is in disagreement about what to do. It’s scary to have one practitioner tell you you’re in danger if you don’t take a particular substance today and another tell you you’re endangering yourself if you do, and to really feel like you don’t have the where-with-all to decide.
Now I am truly thankful to be at Mom and Pop’s house, as I really require a monopoly of their time and attention and support right now. I struggle a lot with guilt about this, as they will testify.
I’ll let Mom take over from here and say more, but first I want to express my regret at not being able to go on and on with tributes to those who have devoted enormous heart and effort to helping me in extraordinary ways. I hope to get to this as soon as possible. I’ll just say for now it’s a wondrous display to watch the various ways that creation (human beings) express(es) love, each a different flavor of gift. I am grateful for it all, and look forward to observing that beautiful display from another standpoint and even more so as a fuller participant.
Love to you all,
Molly
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