A recent post from my Facebook account, that I'd like to share with you here. This one was posted April 26, 2019
I want to thank each and every one of you who responded to my post yesterday. The outpouring of love and support has lifted me in ways that I can't begin to explain. It is an extremely vulnerable act to admit the need for help and to show one's weaknesses in such a public way, and the decision to do so was a process.
I've promised you a health update after all the tests and lab reports came in. To share this in such a public way has also been a process to be ready.
The official diagnosis is a rare disease called Systemic Mastocytosis. In a nutshell, Systemic Mastocytosis means the mast cells in my body are abnormally increased in multiple organs including the bone marrow. It's a small couple of sentences for an illness that has had a huge impact on my quality of life. It is a sudden deeper dive into the Chronic Lyme I've been battling since my early twenties, though was only just properly diagnosed with about three years ago.
For me, the genetic lottery of chronic illness begins with a genetic mutation called the HLA_DR gene which prevents my body from properly identifying toxins and eliminating them. So I get exposed to Lyme and I can't recover from it. I get exposed to mold and the mycotoxins stay in my system wreaking havoc. I get an infection or virus of any kind and the toxic load just continues to build. When my body could not handle the assault on its system any longer the mast cells started reacting to everything.
Everything is making me sick. Not just the fore-named obvious toxins, but benign things like changes in temperature, physical labor and emotional stress, odors – be they toxic, chemical, or natural, and foods – oh my god, all the foods I can no longer eat, even simple pleasures like sitting in the sun, or taking a walk, or working late in the studio. The disease has done damage to just about every organ system. The symptoms are wide and varied.
There is no known cure or direct treatment. The disease is progressive, with each major toxic exposure or new virus I'm exposed to creating a new baseline and elevated symptoms. Mastocytosis is graded in stages, from indolent – which means your prognosis is a fairly normal, if not very high quality, life span with slow disease progression, to the other extreme of masto-leukemia with only a few months expected after diagnosis. I will be undergoing more testing to better determine where I'm at, but based on current tests and symptoms, it looks to be aggressive.
Aggressive masto has an average of 4 years. 41 months actually. 41 months.
I'll be seeing a specialist in May and I have another appointment scheduled with THE Specialist in November. One will begin scheduling tests like a bone marrow biopsy and the other specializes in mast cell diseases and is also an endocrinologist, which is important to my case as I have no thyroid.
To add to this already difficult to tell you about story, a few other things are going on in my life that I have not shared with many people. After years and much hard work on our marriage, my husband and I have separated. I won't elaborate on that much right now, other than to say, I am now living alone.
And I am also displaced.
One of the major triggers for mast cell flare ups is mold toxins and I could tell that I was having a reaction every time I was in the house that I just moved into, so I had the air tested and it came back positive for mold. There is no good way to remediate a house to make it safe enough for a masto patient to stay in that isn't expensive and time consuming. I am staying at a friends house temporarily and had to make the difficult decision in the midst of all of this to ask the landlord to break my lease and move again after only three months there.
That is the long and the short of it. It all seems like a bad dream that I can't wake up from.
Being able to make a living as an artist, selling my work, writing, and teaching workshops has been a tremendous blessing in providing an income. The teaching part has connected me to so many of you. And it has always been something that feeds my soul, the part where we connect. The parts where you light up in class. The parts where you exclaim that you got so much more than techniques from my class. The parts where we have soul deep discussions and I see you get teary eyed in your seat, and the letters and emails you write me afterwards. But it has also been costly to me physically.
It used to be that I could put everything I had into teaching a workshop and then allow myself a day or two to recover afterwards. Over the past few years it started taking longer to regain my strength, and now – it just isn't happening. I am in a rapid spiral. I am spending more and more time in bed, more and more of my life is consumed with pain, twisting muscles, and exhaustion.
Indescribable pain and exhaustion. I've known for a while that I would eventually need to make the shift from teaching in person to teaching online courses, but there never seemed to be enough time to do the work required to produce the content. I no longer have the luxury of that choice.
I am committed to finishing up my teaching schedule for 2019, and have one tentatively booked in March of 2020. I am not throwing in the towel here, but I am no longer beating myself up for not being strong enough to push through this. I've actually made it worse by denying myself in this way. I would never treat a friend the way I have treated my own body and self. Getting mad for not being able to power through. Calling myself names like lazy and unmotivated.
Dammit – when I really stopped, well when this disease stopped me, it took having my wise counselor saying to me over and over “Crystal, stop and really look at yourself. You cannot do this alone.” I kept arguing that I had no choice. I am alone. I just am!
There are full length mirrors on the closet doors here at my friends house and I stood naked in front of them one morning after that session. I could see my front and back in all it’s glory. I am not just thin, I am emaciated. My entire skeleton shows and my skin hangs in big saggy layers where muscle and fat used to be. My chest is sunk inwards and my breasts are completely empty- tiny uneven skin bags. If I were more brave I might take a picture- it is startling to see.
But I don’t need to take a picture to know the truth of what the mirror is showing me and what it means. I can't do this alone. I don't think I was ever meant to.
Those messages can get in deep – the ones that propel us to self deny. It's been a long and slow process of awakening to it for me. I know I have some gifts to offer this world. My writing, my teaching, my art, they aren't going away. But I am entering that place of acceptance, that what I thought it looked like to use them, and what I am actually capable of are not the same. I am leaning in hard here to listen and I have faith that the way will open and when it does, I will follow. But I am in the thick of it, the loosening of my grip of denial and the turning to step into what really is.
For me part of that turning looks like telling you all that I need help. I cannot do this alone. And yes, I know that God is with me. I know that faith can move mountains. I know that He heals and I can give it to Him and all of that. Yes, I do know. But I also know that He did not ever intend for me to do this without other people. Leaning on Him does not mean hiding this from you.
So if you've stuck with me and read this far, first of all thank you. Thank you for just being willing to be a witness to what I am going through. And if you are willing, able, or at all desire to help, here are some ways you might consider:
For local friends and family, I need help packing, I am looking at an apartment on Sunday, but I may have to put my things in storage if I don't find a place right away. Right now I cannot even fathom mustering enough energy to pack and move. I won't be able to begin until mid-May, but if you can spare part of your day when I do, for the first time, I won't say no to that help.
If you are a fan of my art, you might consider purchasing – I have a series of small works that I'll begin listing over the weekend in a pop up sale online at this link *pop up shop is now live. There are also other small to mid sized pieces listed there:
https://squareup.com/store/crystal-neubauer-artist/
Larger works can be viewed on my website at this link and I can assist you in connecting with any of the galleries listed there if you are interested in one of these pieces:
https://crystalneubauer.com/home.html
And finally, my dear friend Jana has started a gofundme to raise money to get me in the best position possible to deal with all of this. I weep even thinking about the generosity from Jana and her husband Jeff, along with those who are already contributing. As my medical and related expenses increase, along with my need to drastically change my teaching schedule to allow myself the margin to take care of myself and begin producing online courses for future income, this is beyond a godsend:
https://www.gofundme.com/f/support-crystal-marie-neubauer
Thank you
Jana Freeman and all of you who have already come forward. And so many others. My friend
Rebecca Stahr and her husband for housing me, my beautiful family – my children who have had to rise to so many challenges in their own lives. My mom,
NancyandKeith Carter who has her entire church and friends network lifting me in prayer. My dearest friends who are giving me strength to stand here and share all of this with you. Even my husband,
Larry who will no longer be my husband, but remains my friend and co-doggie parent. So many people in my life already have stepped up, and spoken up, and shown me how much I am loved.
How could I ever have thought I was in this alone? Seriously I don't know why it took this to prove that I am not. I can't even wrap my head around it right now. And I thank you. I don't know what else to say now, except thank you. Thank you. With so much gratitude. Thank you.
“Our filament of light is carried in the frailest human form, until our acceptance of both storm and silence ushers us into the Fifth Season, where the glare is gone and only the color of things as they are can reach us. Perhaps this is the central work of being human. I’m not sure. I’m just inspired to lean more fully into life, to listen a bit further, to welcome the bareness of being when I stumble into it. But I believe if we can lean on each other from time to time, we can put down all we’re carrying and help ready each other for the Heavenly Pivot.” ~Mark Nepo, 7000 Ways To Listen
I want to thank each and every one of you who responded to my post yesterday. The outpouring of love and support has lifted me in ways that I can't begin to explain. It is an extremely vulnerable act to admit the need for help and to show one's weaknesses in such a public way, and the decision to do so was a process.
I've promised you a health update after all the tests and lab reports came in. To share this in such a public way has also been a process to be ready.
The official diagnosis is a rare disease called Systemic Mastocytosis. In a nutshell, Systemic Mastocytosis means the mast cells in my body are abnormally increased in multiple organs including the bone marrow. It's a small couple of sentences for an illness that has had a huge impact on my quality of life. It is a sudden deeper dive into the Chronic Lyme I've been battling since my early twenties, though was only just properly diagnosed with about three years ago.
For me, the genetic lottery of chronic illness begins with a genetic mutation called the HLA_DR gene which prevents my body from properly identifying toxins and eliminating them. So I get exposed to Lyme and I can't recover from it. I get exposed to mold and the mycotoxins stay in my system wreaking havoc. I get an infection or virus of any kind and the toxic load just continues to build. When my body could not handle the assault on its system any longer the mast cells started reacting to everything.
Everything is making me sick. Not just the fore-named obvious toxins, but benign things like changes in temperature, physical labor and emotional stress, odors – be they toxic, chemical, or natural, and foods – oh my god, all the foods I can no longer eat, even simple pleasures like sitting in the sun, or taking a walk, or working late in the studio. The disease has done damage to just about every organ system. The symptoms are wide and varied.
There is no known cure or direct treatment. The disease is progressive, with each major toxic exposure or new virus I'm exposed to creating a new baseline and elevated symptoms. Mastocytosis is graded in stages, from indolent – which means your prognosis is a fairly normal, if not very high quality, life span with slow disease progression, to the other extreme of masto-leukemia with only a few months expected after diagnosis. I will be undergoing more testing to better determine where I'm at, but based on current tests and symptoms, it looks to be aggressive.
Aggressive masto has an average of 4 years. 41 months actually. 41 months.
I'll be seeing a specialist in May and I have another appointment scheduled with THE Specialist in November. One will begin scheduling tests like a bone marrow biopsy and the other specializes in mast cell diseases and is also an endocrinologist, which is important to my case as I have no thyroid.
To add to this already difficult to tell you about story, a few other things are going on in my life that I have not shared with many people. After years and much hard work on our marriage, my husband and I have separated. I won't elaborate on that much right now, other than to say, I am now living alone.
And I am also displaced.
One of the major triggers for mast cell flare ups is mold toxins and I could tell that I was having a reaction every time I was in the house that I just moved into, so I had the air tested and it came back positive for mold. There is no good way to remediate a house to make it safe enough for a masto patient to stay in that isn't expensive and time consuming. I am staying at a friends house temporarily and had to make the difficult decision in the midst of all of this to ask the landlord to break my lease and move again after only three months there.
That is the long and the short of it. It all seems like a bad dream that I can't wake up from.
Being able to make a living as an artist, selling my work, writing, and teaching workshops has been a tremendous blessing in providing an income. The teaching part has connected me to so many of you. And it has always been something that feeds my soul, the part where we connect. The parts where you light up in class. The parts where you exclaim that you got so much more than techniques from my class. The parts where we have soul deep discussions and I see you get teary eyed in your seat, and the letters and emails you write me afterwards. But it has also been costly to me physically.
It used to be that I could put everything I had into teaching a workshop and then allow myself a day or two to recover afterwards. Over the past few years it started taking longer to regain my strength, and now – it just isn't happening. I am in a rapid spiral. I am spending more and more time in bed, more and more of my life is consumed with pain, twisting muscles, and exhaustion.
Indescribable pain and exhaustion. I've known for a while that I would eventually need to make the shift from teaching in person to teaching online courses, but there never seemed to be enough time to do the work required to produce the content. I no longer have the luxury of that choice.
I am committed to finishing up my teaching schedule for 2019, and have one tentatively booked in March of 2020. I am not throwing in the towel here, but I am no longer beating myself up for not being strong enough to push through this. I've actually made it worse by denying myself in this way. I would never treat a friend the way I have treated my own body and self. Getting mad for not being able to power through. Calling myself names like lazy and unmotivated.
Dammit – when I really stopped, well when this disease stopped me, it took having my wise counselor saying to me over and over “Crystal, stop and really look at yourself. You cannot do this alone.” I kept arguing that I had no choice. I am alone. I just am!
There are full length mirrors on the closet doors here at my friends house and I stood naked in front of them one morning after that session. I could see my front and back in all it’s glory. I am not just thin, I am emaciated. My entire skeleton shows and my skin hangs in big saggy layers where muscle and fat used to be. My chest is sunk inwards and my breasts are completely empty- tiny uneven skin bags. If I were more brave I might take a picture- it is startling to see.
But I don’t need to take a picture to know the truth of what the mirror is showing me and what it means. I can't do this alone. I don't think I was ever meant to.
Those messages can get in deep – the ones that propel us to self deny. It's been a long and slow process of awakening to it for me. I know I have some gifts to offer this world. My writing, my teaching, my art, they aren't going away. But I am entering that place of acceptance, that what I thought it looked like to use them, and what I am actually capable of are not the same. I am leaning in hard here to listen and I have faith that the way will open and when it does, I will follow. But I am in the thick of it, the loosening of my grip of denial and the turning to step into what really is.
For me part of that turning looks like telling you all that I need help. I cannot do this alone. And yes, I know that God is with me. I know that faith can move mountains. I know that He heals and I can give it to Him and all of that. Yes, I do know. But I also know that He did not ever intend for me to do this without other people. Leaning on Him does not mean hiding this from you.
So if you've stuck with me and read this far, first of all thank you. Thank you for just being willing to be a witness to what I am going through. And if you are willing, able, or at all desire to help, here are some ways you might consider:
For local friends and family, I need help packing, I am looking at an apartment on Sunday, but I may have to put my things in storage if I don't find a place right away. Right now I cannot even fathom mustering enough energy to pack and move. I won't be able to begin until mid-May, but if you can spare part of your day when I do, for the first time, I won't say no to that help.
If you've ever considered signing up for a workshop, now is the time. You can find the schedule with links to register for each one on my blog at this link: https://otherpeoplesflowers.blogspot.com/p/my-workshops.html
If you are a fan of my art, you might consider purchasing – I have a series of small works that I'll begin listing over the weekend in a pop up sale online at this link. There are also other small to mid sized pieces listed there: https://squareup.com/store/crystal-neubauer-artist/
Larger works can be viewed on my website at this link and I can assist you in connecting with any of the galleries listed there if you are interested in one of these pieces: https://crystalneubauer.com/home.html
And finally, my dear friend Jana has started a gofundme to raise money to get me in the best position possible to deal with all of this. I weep even thinking about the generosity from Jana and her husband Jeff, along with those who are already contributing. As my medical and related expenses increase, along with my need to drastically change my teaching schedule to allow myself the margin to take care of myself and begin producing online courses for future income, this is beyond a godsend: https://www.gofundme.com/f/support-crystal-marie-neubauer
Thank you Jana Freeman and all of you who have already come forward. And so many others. My friend Rebecca Stahr and her husband for housing me, my beautiful family – my children who have had to rise to so many challenges in their own lives. My mom, NancyandKeith Carter who has her entire church and friends network lifting me in prayer. My dearest friends who are giving me strength to stand here and share all of this with you. Even my husband, Larry who will no longer be my husband, but remains my friend and co-doggie parent. So many people in my life already have stepped up, and spoken up, and shown me how much I am loved.
How could I ever have thought I was in this alone? Seriously I don't know why it took this to prove that I am not. I can't even wrap my head around it right now. And I thank you. I don't know what else to say now, except thank you. Thank you. With so much gratitude. Thank you.
“Our filament of light is carried in the frailest human form, until our acceptance of both storm and silence ushers us into the Fifth Season, where the glare is gone and only the color of things as they are can reach us. Perhaps this is the central work of being human. I’m not sure. I’m just inspired to lean more fully into life, to listen a bit further, to welcome the bareness of being when I stumble into it. But I believe if we can lean on each other from time to time, we can put down all we’re carrying and help ready each other for the Heavenly Pivot.” ~Mark Nepo, 7000 Ways To Listen
I want to thank each and every one of you who responded to my post yesterday. The outpouring of love and support has lifted me in ways that I can't begin to explain. It is an extremely vulnerable act to admit the need for help and to show one's weaknesses in such a public way, and the decision to do so was a process.
I've promised you a health update after all the tests and lab reports came in. To share this in such a public way has also been a process to be ready.
The official diagnosis is a rare disease called Systemic Mastocytosis. In a nutshell, Systemic Mastocytosis means the mast cells in my body are abnormally increased in multiple organs including the bone marrow. It's a small couple of sentences for an illness that has had a huge impact on my quality of life. It is a sudden deeper dive into the Chronic Lyme I've been battling since my early twenties, though was only just properly diagnosed with about three years ago.
For me, the genetic lottery of chronic illness begins with a genetic mutation called the HLA_DR gene which prevents my body from properly identifying toxins and eliminating them. So I get exposed to Lyme and I can't recover from it. I get exposed to mold and the mycotoxins stay in my system wreaking havoc. I get an infection or virus of any kind and the toxic load just continues to build. When my body could not handle the assault on its system any longer the mast cells started reacting to everything.
Everything is making me sick. Not just the fore-named obvious toxins, but benign things like changes in temperature, physical labor and emotional stress, odors – be they toxic, chemical, or natural, and foods – oh my god, all the foods I can no longer eat, even simple pleasures like sitting in the sun, or taking a walk, or working late in the studio. The disease has done damage to just about every organ system. The symptoms are wide and varied.
There is no known cure or direct treatment. The disease is progressive, with each major toxic exposure or new virus I'm exposed to creating a new baseline and elevated symptoms. Mastocytosis is graded in stages, from indolent – which means your prognosis is a fairly normal, if not very high quality, life span with slow disease progression, to the other extreme of masto-leukemia with only a few months expected after diagnosis. I will be undergoing more testing to better determine where I'm at, but based on current tests and symptoms, it looks to be aggressive.
Aggressive masto has an average of 4 years. 41 months actually. 41 months.
I'll be seeing a specialist in May and I have another appointment scheduled with THE Specialist in November. One will begin scheduling tests like a bone marrow biopsy and the other specializes in mast cell diseases and is also an endocrinologist, which is important to my case as I have no thyroid.
To add to this already difficult to tell you about story, a few other things are going on in my life that I have not shared with many people. After years and much hard work on our marriage, my husband and I have separated. I won't elaborate on that much right now, other than to say, I am now living alone.
And I am also displaced.
One of the major triggers for mast cell flare ups is mold toxins and I could tell that I was having a reaction every time I was in the house that I just moved into, so I had the air tested and it came back positive for mold. There is no good way to remediate a house to make it safe enough for a masto patient to stay in that isn't expensive and time consuming. I am staying at a friends house temporarily and had to make the difficult decision in the midst of all of this to ask the landlord to break my lease and move again after only three months there.
That is the long and the short of it. It all seems like a bad dream that I can't wake up from.
Being able to make a living as an artist, selling my work, writing, and teaching workshops has been a tremendous blessing in providing an income. The teaching part has connected me to so many of you. And it has always been something that feeds my soul, the part where we connect. The parts where you light up in class. The parts where you exclaim that you got so much more than techniques from my class. The parts where we have soul deep discussions and I see you get teary eyed in your seat, and the letters and emails you write me afterwards. But it has also been costly to me physically.
It used to be that I could put everything I had into teaching a workshop and then allow myself a day or two to recover afterwards. Over the past few years it started taking longer to regain my strength, and now – it just isn't happening. I am in a rapid spiral. I am spending more and more time in bed, more and more of my life is consumed with pain, twisting muscles, and exhaustion.
Indescribable pain and exhaustion. I've known for a while that I would eventually need to make the shift from teaching in person to teaching online courses, but there never seemed to be enough time to do the work required to produce the content. I no longer have the luxury of that choice.
I am committed to finishing up my teaching schedule for 2019, and have one tentatively booked in March of 2020. I am not throwing in the towel here, but I am no longer beating myself up for not being strong enough to push through this. I've actually made it worse by denying myself in this way. I would never treat a friend the way I have treated my own body and self. Getting mad for not being able to power through. Calling myself names like lazy and unmotivated.
Dammit – when I really stopped, well when this disease stopped me, it took having my wise counselor saying to me over and over “Crystal, stop and really look at yourself. You cannot do this alone.” I kept arguing that I had no choice. I am alone. I just am!
There are full length mirrors on the closet doors here at my friends house and I stood naked in front of them one morning after that session. I could see my front and back in all it’s glory. I am not just thin, I am emaciated. My entire skeleton shows and my skin hangs in big saggy layers where muscle and fat used to be. My chest is sunk inwards and my breasts are completely empty- tiny uneven skin bags. If I were more brave I might take a picture- it is startling to see.
But I don’t need to take a picture to know the truth of what the mirror is showing me and what it means. I can't do this alone. I don't think I was ever meant to.
Those messages can get in deep – the ones that propel us to self deny. It's been a long and slow process of awakening to it for me. I know I have some gifts to offer this world. My writing, my teaching, my art, they aren't going away. But I am entering that place of acceptance, that what I thought it looked like to use them, and what I am actually capable of are not the same. I am leaning in hard here to listen and I have faith that the way will open and when it does, I will follow. But I am in the thick of it, the loosening of my grip of denial and the turning to step into what really is.
For me part of that turning looks like telling you all that I need help. I cannot do this alone. And yes, I know that God is with me. I know that faith can move mountains. I know that He heals and I can give it to Him and all of that. Yes, I do know. But I also know that He did not ever intend for me to do this without other people. Leaning on Him does not mean hiding this from you.
So if you've stuck with me and read this far, first of all thank you. Thank you for just being willing to be a witness to what I am going through. And if you are willing, able, or at all desire to help, here are some ways you might consider:
For local friends and family, I need help packing, I am looking at an apartment on Sunday, but I may have to put my things in storage if I don't find a place right away. Right now I cannot even fathom mustering enough energy to pack and move. I won't be able to begin until mid-May, but if you can spare part of your day when I do, for the first time, I won't say no to that help.
If you've ever considered signing up for a workshop, now is the time. You can find the schedule with links to register for each one on my blog at this link: https://otherpeoplesflowers.blogspot.com/p/my-workshops.html
If you are a fan of my art, you might consider purchasing – I have a series of small works that I'll begin listing over the weekend in a pop up sale online at this link. There are also other small to mid sized pieces listed there: https://squareup.com/store/crystal-neubauer-artist/
Larger works can be viewed on my website at this link and I can assist you in connecting with any of the galleries listed there if you are interested in one of these pieces: https://crystalneubauer.com/home.html
And finally, my dear friend Jana has started a gofundme to raise money to get me in the best position possible to deal with all of this. I weep even thinking about the generosity from Jana and her husband Jeff, along with those who are already contributing. As my medical and related expenses increase, along with my need to drastically change my teaching schedule to allow myself the margin to take care of myself and begin producing online courses for future income, this is beyond a godsend: https://www.gofundme.com/f/support-crystal-marie-neubauer
Thank you Jana Freeman and all of you who have already come forward. And so many others. My friend Rebecca Stahr and her husband for housing me, my beautiful family – my children who have had to rise to so many challenges in their own lives. My mom, NancyandKeith Carter who has her entire church and friends network lifting me in prayer. My dearest friends who are giving me strength to stand here and share all of this with you. Even my husband, Larry who will no longer be my husband, but remains my friend and co-doggie parent. So many people in my life already have stepped up, and spoken up, and shown me how much I am loved.
How could I ever have thought I was in this alone? Seriously I don't know why it took this to prove that I am not. I can't even wrap my head around it right now. And I thank you. I don't know what else to say now, except thank you. Thank you. With so much gratitude. Thank you.
“Our filament of light is carried in the frailest human form, until our acceptance of both storm and silence ushers us into the Fifth Season, where the glare is gone and only the color of things as they are can reach us. Perhaps this is the central work of being human. I’m not sure. I’m just inspired to lean more fully into life, to listen a bit further, to welcome the bareness of being when I stumble into it. But I believe if we can lean on each other from time to time, we can put down all we’re carrying and help ready each other for the Heavenly Pivot.” ~Mark Nepo, 7000 Ways To Listen
