Keep Breathing With Angela
Donation protected
My story is somewhat long and has many parts, and I appreciate you listening!
I'll start with the financial part and then explain the health issues that got me here.
My last steady gig was as the pianist for the Cathedral Basilica of St. Francis of Assisi in Santa Fe, and it was a job I was very happy with and proud of. I was making my living as a musician! But I was in pain much of the time. The last mass I played was the third mass on Christmas Day, 2016. I had played for the 8:00, 10:00 and noon. By the time the noon service ended, I couldn't use the fingers of my right hand. I tried getting worker's comp but was denied and told that it's rare that WC covers repetitive stress injuries.
Since then, for almost three years, I have been living off of savings and profit from the sale of a house, and I am reaching the end of those funds. I have been so scared, not knowing what I'm going to do. It never occurred to me that I could ask for help. Until now. So, instead of filing for bankruptcy and hoping that I don't lose everything, I am reaching out to my community for help.
Here's what is going on that has kept me from working and functioning:
Almost three years ago I made an appointment with my doctor to get tested for early-onset Alzheimer's. I was having difficulty remembering simple things, and more than once in the middle of a conversation I completely blanked on what I was talking about and (the scariest part) even who I was talking to.
It has been a long road of research and discovery to learn that what has been going on with me is a multi-faceted health issue that stems from one source: my airway.
The normal human pharyngeal airway should measure about 250-400mm around. My first measurement, taken in 2016, was 9.7mm. It took awhile for this to sink in completely - that the opening I am breathing through should be as big around as a quarter, but mine was about the size of a coffee stirrer.
My physiology is naturally small anyway, and I had a tongue tie that wasn’t treated, but it was greatly exacerbated when I had ortho as a teen to correct a cross bite. Standard approach is jaw surgery but I had an overzealous orthodontist who instead used a palate expander, removed all four bicuspids and followed it with retractive braces, which made my mouth way too small for my tongue. This pushed my tongue back into my airway and changed my anatomy so much that for 35 years I have struggled to breathe.
There is constant tension in my neck, face, and head to try to keep my airway opened enough to breathe, both during the day and at night.
In order to breathe during the day I developed a head-forward posture (head pushes forward to open the airway, like when you do CPR and they say to lift the jaw to open the airway). This has been the cause of constant and often severe neck, shoulder, elbow and wrist pain, often interfering with my work as a professional musician. Well I should say it interfered with just being a functional human. I’ve been told (often in a shaming way) by countless physical therapists that my pain would go away if I would just follow through with my exercises and “fix” my posture. But now I know that all the exercising in the world wouldn’t have changed that posture because breathing is, well, EVERYTHING and no amount of work or will can change that.
In order to breathe at night, my my teeth clench to keep me aroused enough that I don’t go into deep sleep. During deep sleep our bodies fully relax, and if mine relaxes all the way, I stop breathing because my airway closes completely.
*Btw I’m not a candidate for CPAP because of my narrow airway (CPAP is for a collapsing airway, not a small one. You can't force air through a small hole).
As a result of this, I haven’t had deep sleep for many years. The lack of deep sleep is what made me think I was developing Alzheimer's.
But what I learned is that I actually suffer from extreme fatigue. It’s been a battle since I was a teenager. I pushed through though and gave everything I had to whatever I was doing, but there's only so much of that a body can take. Over the last couple years, ordinary life has felt impossible, and I’m finally acknowledging my struggle.
All these years I thought it was because I don't drink coffee!
I’ve since had a sleep study and an obstructive sleep apnea diagnosis. I also have a lot of symptoms of UARS (upper airway resistance syndrome). The sleep study confirmed that I am getting virtually no deep sleep and very little REM). Because I’m not getting rejuvenated at night, and because I can’t breathe without a struggle, my body has been in a constant state of stress.
The stress itself has also caused a lot of physical issues. I’ve learned that it doesn’t matter if stress is emotional or physiological in origin; the body’s response is the same. Now that I know how not breathing puts my body in a constant state of fight or flight and my nervous system is totally out of balance, it makes sense that I have been diagnosed with an anxiety disorder.
I’m battling all kinds of stress-related disease now, some of them auto-immune, including shingles, alopecia, digestive issues, bladder pain, etc.
The compounded effects of the fatigue, the stress, the lack of sleep, and the difficulty breathing, I have been unable to function in any kind of "normal" way. Holding down a normal job is impossible for me right now.
I currently teach three singing classes each week, and I have occasional gigs that I have to build up to, and often pay the price afterward. At this point in my symptoms, anytime I put out energy, I pay for it later, by getting immediately sick with whatever virus is around, or by showing signs of a couple different auto-immune issues. My income is about $600/month.
People have said to me recently, "you look great!" or "I saw you singing with the Sticky, and you seemed fine to me!"
But what they don't see is what happens to me afterward. I was sick for a week after the Sticky show, and the depression and anxiety that comes from that has been crippling.
Over the years I have spent thousands of dollars on different healing modalities to try to help the different symptoms, not realizing that they're all related, and have only been able to temporarily relieve some of the pain some of the time.
About a year ago, I learned that I am eligible for a treatment that has the potential to help! Because of the OSA diagnosis, my insurance will cover maxillomandibular jaw advancement surgery and genioplasty....in lay terms, that means cutting into my face through my gums, pulling all of the muscles, etc. out of the way so that the surgeon can cut my upper and lower jaws, move them forward by 10mm, hold them steady with metal plates and screws, and cut my chin and pull it forward, also holding it with plates and screws, further releasing my tongue out of my airway. This is supposed to pull my mid- and low-face forward to make room for my tongue, allowing it to rest forward enough that it doesn't push into my airway. It is an invasive and frightening surgery, but it is the only recognized way to deal with my particular case of OSA with success.
Surgery is scheduled for September 18, and the recovery will be long and difficult. I will be on a liquid diet for six weeks, and I'm not supposed to work or exercise during this time. I'm in a few support groups, and many people who have had this same surgery say that it is a game changer! They say that in spite of the difficult recovery, being able to breathe has made the whole thing worth it. Being 50 years old, the risks are much greater for me, and the recovery period is longer, but I should be able to fully function after about a year.
After my recovery I will have to rebuild my livelihood, and I'm not sure how long that's going to take.
Because of my limited income I have great Medicaid insurance through New Mexico. I haven't heard from my insurance company if this surgery is covered 100%, but it is very likely that it is because of the OSA diagnosis. Thank goodness - because it is about a $40,000 surgery!
Unfortunately, not all of the procedures have been covered. So far my out-of-pocket medical expenses for 2019 alone have totaled $14,000.
I am asking for funds to cover these expenses as well as some money to cover some of my living expenses for the next several months as I rebuild my career.
I am so appreciative of my community, and the outpouring of love and support I have already received in so many ways has been overwhelming!
I truly thank you from the bottom of my heart - I will take a deep breath for YOU!
Keep breathing, it's the most important part!
Ah, here - I found some photos and an animation that show what they'll be doing:
I'll start with the financial part and then explain the health issues that got me here.
My last steady gig was as the pianist for the Cathedral Basilica of St. Francis of Assisi in Santa Fe, and it was a job I was very happy with and proud of. I was making my living as a musician! But I was in pain much of the time. The last mass I played was the third mass on Christmas Day, 2016. I had played for the 8:00, 10:00 and noon. By the time the noon service ended, I couldn't use the fingers of my right hand. I tried getting worker's comp but was denied and told that it's rare that WC covers repetitive stress injuries.
Since then, for almost three years, I have been living off of savings and profit from the sale of a house, and I am reaching the end of those funds. I have been so scared, not knowing what I'm going to do. It never occurred to me that I could ask for help. Until now. So, instead of filing for bankruptcy and hoping that I don't lose everything, I am reaching out to my community for help.
Here's what is going on that has kept me from working and functioning:
Almost three years ago I made an appointment with my doctor to get tested for early-onset Alzheimer's. I was having difficulty remembering simple things, and more than once in the middle of a conversation I completely blanked on what I was talking about and (the scariest part) even who I was talking to.
It has been a long road of research and discovery to learn that what has been going on with me is a multi-faceted health issue that stems from one source: my airway.
The normal human pharyngeal airway should measure about 250-400mm around. My first measurement, taken in 2016, was 9.7mm. It took awhile for this to sink in completely - that the opening I am breathing through should be as big around as a quarter, but mine was about the size of a coffee stirrer.
My physiology is naturally small anyway, and I had a tongue tie that wasn’t treated, but it was greatly exacerbated when I had ortho as a teen to correct a cross bite. Standard approach is jaw surgery but I had an overzealous orthodontist who instead used a palate expander, removed all four bicuspids and followed it with retractive braces, which made my mouth way too small for my tongue. This pushed my tongue back into my airway and changed my anatomy so much that for 35 years I have struggled to breathe.
There is constant tension in my neck, face, and head to try to keep my airway opened enough to breathe, both during the day and at night.
In order to breathe during the day I developed a head-forward posture (head pushes forward to open the airway, like when you do CPR and they say to lift the jaw to open the airway). This has been the cause of constant and often severe neck, shoulder, elbow and wrist pain, often interfering with my work as a professional musician. Well I should say it interfered with just being a functional human. I’ve been told (often in a shaming way) by countless physical therapists that my pain would go away if I would just follow through with my exercises and “fix” my posture. But now I know that all the exercising in the world wouldn’t have changed that posture because breathing is, well, EVERYTHING and no amount of work or will can change that.
In order to breathe at night, my my teeth clench to keep me aroused enough that I don’t go into deep sleep. During deep sleep our bodies fully relax, and if mine relaxes all the way, I stop breathing because my airway closes completely.
*Btw I’m not a candidate for CPAP because of my narrow airway (CPAP is for a collapsing airway, not a small one. You can't force air through a small hole).
As a result of this, I haven’t had deep sleep for many years. The lack of deep sleep is what made me think I was developing Alzheimer's.
But what I learned is that I actually suffer from extreme fatigue. It’s been a battle since I was a teenager. I pushed through though and gave everything I had to whatever I was doing, but there's only so much of that a body can take. Over the last couple years, ordinary life has felt impossible, and I’m finally acknowledging my struggle.
All these years I thought it was because I don't drink coffee!
I’ve since had a sleep study and an obstructive sleep apnea diagnosis. I also have a lot of symptoms of UARS (upper airway resistance syndrome). The sleep study confirmed that I am getting virtually no deep sleep and very little REM). Because I’m not getting rejuvenated at night, and because I can’t breathe without a struggle, my body has been in a constant state of stress.
The stress itself has also caused a lot of physical issues. I’ve learned that it doesn’t matter if stress is emotional or physiological in origin; the body’s response is the same. Now that I know how not breathing puts my body in a constant state of fight or flight and my nervous system is totally out of balance, it makes sense that I have been diagnosed with an anxiety disorder.
I’m battling all kinds of stress-related disease now, some of them auto-immune, including shingles, alopecia, digestive issues, bladder pain, etc.
The compounded effects of the fatigue, the stress, the lack of sleep, and the difficulty breathing, I have been unable to function in any kind of "normal" way. Holding down a normal job is impossible for me right now.
I currently teach three singing classes each week, and I have occasional gigs that I have to build up to, and often pay the price afterward. At this point in my symptoms, anytime I put out energy, I pay for it later, by getting immediately sick with whatever virus is around, or by showing signs of a couple different auto-immune issues. My income is about $600/month.
People have said to me recently, "you look great!" or "I saw you singing with the Sticky, and you seemed fine to me!"
But what they don't see is what happens to me afterward. I was sick for a week after the Sticky show, and the depression and anxiety that comes from that has been crippling.
Over the years I have spent thousands of dollars on different healing modalities to try to help the different symptoms, not realizing that they're all related, and have only been able to temporarily relieve some of the pain some of the time.
About a year ago, I learned that I am eligible for a treatment that has the potential to help! Because of the OSA diagnosis, my insurance will cover maxillomandibular jaw advancement surgery and genioplasty....in lay terms, that means cutting into my face through my gums, pulling all of the muscles, etc. out of the way so that the surgeon can cut my upper and lower jaws, move them forward by 10mm, hold them steady with metal plates and screws, and cut my chin and pull it forward, also holding it with plates and screws, further releasing my tongue out of my airway. This is supposed to pull my mid- and low-face forward to make room for my tongue, allowing it to rest forward enough that it doesn't push into my airway. It is an invasive and frightening surgery, but it is the only recognized way to deal with my particular case of OSA with success.
Surgery is scheduled for September 18, and the recovery will be long and difficult. I will be on a liquid diet for six weeks, and I'm not supposed to work or exercise during this time. I'm in a few support groups, and many people who have had this same surgery say that it is a game changer! They say that in spite of the difficult recovery, being able to breathe has made the whole thing worth it. Being 50 years old, the risks are much greater for me, and the recovery period is longer, but I should be able to fully function after about a year.
After my recovery I will have to rebuild my livelihood, and I'm not sure how long that's going to take.
Because of my limited income I have great Medicaid insurance through New Mexico. I haven't heard from my insurance company if this surgery is covered 100%, but it is very likely that it is because of the OSA diagnosis. Thank goodness - because it is about a $40,000 surgery!
Unfortunately, not all of the procedures have been covered. So far my out-of-pocket medical expenses for 2019 alone have totaled $14,000.
I am asking for funds to cover these expenses as well as some money to cover some of my living expenses for the next several months as I rebuild my career.
I am so appreciative of my community, and the outpouring of love and support I have already received in so many ways has been overwhelming!
I truly thank you from the bottom of my heart - I will take a deep breath for YOU!
Keep breathing, it's the most important part!
Ah, here - I found some photos and an animation that show what they'll be doing:
Organizer
Angela Gabriel
Organizer
Santa Fe, NM