Help Juliet get Medical Treatment in Ohio
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Hello friends. This year has been really rough for me, but things are potentially looking up. I will try to keep this short and just give you guys the basics here. If you want to know more about my health journey, I will be posting periodic updates here and on my instagram.
I am coming from a place of deep urgency and real emotional vulnerability, so I really appreciate anyone who is here with me right now.
I first got sick about five years ago and it was a slow, steady decline for me into mystery chronic illnesses. About two years ago, after my health had declined to the point that I was sleeping every hour of the day I wasn't working, and I was constantly in and out of hospitals, I got my first big diagnosis. I was formally diagnosed with Mast Cell Activation Syndrome (MCAS) and Fibromyalgia as a comorbidity related to that in 2019. I started taking multiple medications and was, genuinely for the first time in years, on an upswing.
Then I got Covid.
I had Covid very early on, probably because I have an immune disease, and tend to be the first one to get colds and other ailments. For me, the actual virus was about as bad as my yearly bronchitis. It was not as bad as either of my bouts with Pneumonia in the last three years, but it lingered, and lingered, and then, after the actual cough went away, everything got worse.
I already had mild Post Orthostatic Tachycardia Syndrome (POTS) as a result of MCAS, as well as what I now know to be Ehlers Danlos (EDS). Starting in March, my diagnosis of Chronic Fatigue Syndrome (CFS) began to morph into something much, much worse. Now, it isn't just that I am tired, it's that my entire body seems to go into shock over the smallest things.
I now have a diagnosis of severe POTS with daily near-syncope, and it makes everything incredibly difficult. I cannot stand for more than 3-5 minutes a time. My blood pressure and heart rate become erratic, and symptoms range from discomfort to lack of consciousness. Because POTS is a disease of the Autonomic Nervous System (ANS), it means I can't regulate body functions normally.
I have trouble with my body temperature, my heart rate, my blood pressure, circulation, digestion, bladder function, muscle reflexes and memory. All of these things go haywire, which makes every day exhausting and difficult.
I can no longer do things for myself like walking to get groceries, taking trains around, or cleaning my apartment. I can't work in my old field in part because of my high risk to other Covid variants, but mostly because my symptoms have become so severe. I can only work from home, and only a few hours a day.
I have recently begun treatment, but since this condition is chronic, the treatment is going to be long term if not lifelong. Since I can no longer work the way I used to, and since I live in one of the most expensive cities in the world, there are some things that need to change.
I have decided that I am moving to Cleveland to be near one of the best neurology centers in the country (Cleveland Clinic), and so that I can afford to live on my own/with the medical assistance I need, and so that I can have some of my financial and physical independence back.
Cleveland Clinic is one of the best hospitals in the country, and they offer very specific treatment for POTS that is not widely available, including cardiac rehab programs, pain management, medication management, and most importantly-- comprehensive treatment of the underlying disease. Since I have neurological disorder (POTS) caused by an immune disease (MCAS), I need a team of doctors who are working together and communicating. Moving to Cleveland will give me the opportunity to have all of my treatment in one place, with easy access to both the medical and physical aspects of long term treatment.
In order to do this, I need to raise funds for several things. The last year has put me in a worse financial spot than I have ever been in. Since I can't do things on my own, I will need assistance to get moving, and to get settled. Here is a breakdown of what I need.
$2,000 for first month/deposit on a place in Ohio
$1,000 for movers fees and travel expenses
$2,000 for a used car to get to and from the hospital in Ohio
$1,000 for furniture, supplies and food once I move
$3,000 for rent, groceries, and initial medical expenses the first 3 months I am in treatment and getting settled.
The beauty of crowdfunding (in a world where, really!! basic housing and medical treatment would ideally be covered) is that even the smallest amount goes a long way. I will be posting health updates here and on my instagram for anyone who wants to follow my journey as I make these huge changes. I am hoping to move late this spring, or as soon as I have enough to do so!
Thank you all for reading. Please donate and share this if you can!
I am coming from a place of deep urgency and real emotional vulnerability, so I really appreciate anyone who is here with me right now.
I first got sick about five years ago and it was a slow, steady decline for me into mystery chronic illnesses. About two years ago, after my health had declined to the point that I was sleeping every hour of the day I wasn't working, and I was constantly in and out of hospitals, I got my first big diagnosis. I was formally diagnosed with Mast Cell Activation Syndrome (MCAS) and Fibromyalgia as a comorbidity related to that in 2019. I started taking multiple medications and was, genuinely for the first time in years, on an upswing.
Then I got Covid.
I had Covid very early on, probably because I have an immune disease, and tend to be the first one to get colds and other ailments. For me, the actual virus was about as bad as my yearly bronchitis. It was not as bad as either of my bouts with Pneumonia in the last three years, but it lingered, and lingered, and then, after the actual cough went away, everything got worse.
I already had mild Post Orthostatic Tachycardia Syndrome (POTS) as a result of MCAS, as well as what I now know to be Ehlers Danlos (EDS). Starting in March, my diagnosis of Chronic Fatigue Syndrome (CFS) began to morph into something much, much worse. Now, it isn't just that I am tired, it's that my entire body seems to go into shock over the smallest things.
I now have a diagnosis of severe POTS with daily near-syncope, and it makes everything incredibly difficult. I cannot stand for more than 3-5 minutes a time. My blood pressure and heart rate become erratic, and symptoms range from discomfort to lack of consciousness. Because POTS is a disease of the Autonomic Nervous System (ANS), it means I can't regulate body functions normally.
I have trouble with my body temperature, my heart rate, my blood pressure, circulation, digestion, bladder function, muscle reflexes and memory. All of these things go haywire, which makes every day exhausting and difficult.
I can no longer do things for myself like walking to get groceries, taking trains around, or cleaning my apartment. I can't work in my old field in part because of my high risk to other Covid variants, but mostly because my symptoms have become so severe. I can only work from home, and only a few hours a day.
I have recently begun treatment, but since this condition is chronic, the treatment is going to be long term if not lifelong. Since I can no longer work the way I used to, and since I live in one of the most expensive cities in the world, there are some things that need to change.
I have decided that I am moving to Cleveland to be near one of the best neurology centers in the country (Cleveland Clinic), and so that I can afford to live on my own/with the medical assistance I need, and so that I can have some of my financial and physical independence back.
Cleveland Clinic is one of the best hospitals in the country, and they offer very specific treatment for POTS that is not widely available, including cardiac rehab programs, pain management, medication management, and most importantly-- comprehensive treatment of the underlying disease. Since I have neurological disorder (POTS) caused by an immune disease (MCAS), I need a team of doctors who are working together and communicating. Moving to Cleveland will give me the opportunity to have all of my treatment in one place, with easy access to both the medical and physical aspects of long term treatment.
In order to do this, I need to raise funds for several things. The last year has put me in a worse financial spot than I have ever been in. Since I can't do things on my own, I will need assistance to get moving, and to get settled. Here is a breakdown of what I need.
$2,000 for first month/deposit on a place in Ohio
$1,000 for movers fees and travel expenses
$2,000 for a used car to get to and from the hospital in Ohio
$1,000 for furniture, supplies and food once I move
$3,000 for rent, groceries, and initial medical expenses the first 3 months I am in treatment and getting settled.
The beauty of crowdfunding (in a world where, really!! basic housing and medical treatment would ideally be covered) is that even the smallest amount goes a long way. I will be posting health updates here and on my instagram for anyone who wants to follow my journey as I make these huge changes. I am hoping to move late this spring, or as soon as I have enough to do so!
Thank you all for reading. Please donate and share this if you can!
Organizer
Juliet D
Organizer
Brooklyn, NY