Every year the Mayo Clinic treats approximately 400 people who have Achalasia.
In 2015, I'll be one of them.
In early December, barring any crazy last-minute life changes, I'll get off the plane from a week-long business trip in Boston (where I will gluttonously consume oysters and lobster with wild abandon and also hang out with other really cool credit union party people) and drive to Rochester, MN with my mom to go through a series of Upper GI tests, meetings with doctors, and get an overall better idea of what this condition is that exists within me. We'll determine if I should have another surgery; if I should just have a dilation; and/or what my next steps are in management.
Part of me is completely comfortable with what's going to happen. I know the tests they'll run. I'll hate them, but I know them. I'll probably cry. I'll probably drop the F-bomb on multiple occasions. I'll once again get really comfortable with hospital gowns. Hospital gowns are something that you can't really think too much about because if you do, you might prefer to just be naked.
Another part of me, the nerdy side, is stoked to science. What they find inside my body can be used towards research to help someone else with Achalasia. It can help me. I've pretty much decided that if this is the hand of cards I've been dealt, I'm going to play them for the win. In my eyes, the win is knowing someone else can be helped because of me.
There's a huge part of me that's thankful. Thankful that there is a place that exists closer to where I live now than where I lived 11 years ago at first diagnosis that specializes in the uniqueness that is my esophagus.
Then there's the fear of not knowing what's next or what they'll find. I like to think that my fear is the smallest part of me on this journey, but it isn't. I deal with the fear in big waves of self-pity once in a blue moon. I process, I cry, I get angry at the world, then I come to my senses and realize just how fortunate I am.
Now it's onto getting medical records sent to Mayo which is proving to be a stressful adventure in navigating every doctor's office interpretation of HIPPA. That's its own blog post!
Monday, October 26, 2015
Saturday, October 24, 2015
2005
At 17, there are life events that teenage girls might be concerned about: College choices. Prom dates. Senior boys. Friday night football games.
My concerns were a little different. I was concerned about being able to eat. Why I kept throwing up? Why my tummy and chest hurt all the time? Why I had chronic sinus infections? Why I had acid reflux and heartburn that would show up at the most inopportune times? Why I was so incredibly tired and unfocused?
I was experiencing the symptoms of the 1 in 100,000 who have Achalasia, a rare swallowing disorder of the esophagus. In 2005, I was one of the 3000 people annually who were diagnosed with it. Average age of presentation of this disease is 50. Yes, at 17 it's very likely I was one of the youngest that year to even be diagnosed with this disease. I write these statistics not to distinguish myself as "special" but instead to help you understand how truly challenging it is to diagnose and treat, and how unique my particular situation is.
When I think back on those events even more, I realize that I was probably symptomatic since middle school around 13. My relationship with food struggled not because I did not like to eat. Trust me. I always did and still do love a good meal. My struggle with food came from not actually being able to eat it.
For approximately 4 years, 13 to 17, my symptoms slowly worsened until January of 2007 when I woke up in a pool of my own vomit from an undigested dinner from the night before.
I have to say what was entirely inconvenient about this for me was that I was in the middle of Swim Team season, Mock Trial season, and had just been named the local Junior Miss for my town. I was also in the middle of a killer school schedule filled with Advanced Placement classes. I was pursuing my vocal talents in lessons, church groups, and various events around my small town.
I am an overachiever. This knocked me back.
There was too much going on to be...sick.
My pediatrician immediately referred me to a gastroenterologist. The tests began. The vomiting continued. The weight-loss was apparent. My malnourished body sallowed my skin.
2 weeks later. Barium swallow. Immensely painful pressure. I vomited all the white chalk in my mother's car. That car eventually became mine 8 years later. No matter the cleaning...chalk does not come out of grey carpet completely.
The barium swallow showed an opening no bigger than the tip of a straw from my esophagus to my stomach.
2 weeks later. Esophageal Manometry. By far the most traumatic testing experience in my whole life. Tube goes up your nose and down your throat. In full exorcist style, I screamed and projectile vomited on the nurse. My dad was there for that one. He had to calm me down enough to try again.
The manometry showed no motility in the esophagus. Where there should be movement, there was none.
2 weeks later. Endoscopy with dilation. A good nap. I don't remember anything before but I remember afterwards. The gastroenterologist told me that my tissues looked healthy but that I was going to need surgery.
2 weeks later. Surgeon's office talking about laproscopic surgery to treat my condition that was only 3 years old at that time. Fortunately he had performed many of these in Florida. Surgery was scheduled for 5 weeks later. Heller Myotomy with Fundopilcation. While I can't see it on the outside, 5 scars remain on my tummy.
In these 3 months from diagnoses to surgery, I managed to lose another 30 or so pounds. My sister, who has always been petite in stature and I were sharing clothes because all of mine were too big and falling off my body.
My breakfast was Ensure and gummy vitamins. My lunch was applesauce and toddler crackers. My dinner was pureed soup. Yet I still managed to participate in Mock Trial, although in a different role than I would usually do. I still swam. Pretty sure swimming saved my spirit through this. In the water, I wasn't someone who was sick. I was free. I still helped with the school pageants and cheered my friends onto victories. I still sang lots and lots much to my sister's annoyance.
I still took the SATs. I took my practice AP tests. Everyone tried to maintain normalcy.
I was sleeping a lot. I was tired. I was hurting. I was afraid.
My friends, my school family (where my mother was a teacher) and my activities got me through this. People loved me through the ups and downs which I appreciate even more 10 years out. They are the friends who kept me laughing, held my books for me when I came back to school in a wheelchair, came to the hospital to visit and came to my house with smiley face balloons when I was couch-bound. They are the friends who loved my sister and took care of her when we weren't able to be our normal dynamic-duo. They are friends who offered prayers. There's the friend who sat at the hospital all morning with my family during my long surgery and came to sit with me before big procedures. Her Daddy (a surgeon as well) called my surgeon to check on my progress. (That girl is gonna be a Mama in January and that is one lucky little boy.)
I got up early one Thursday morning to have surgery.
I spent the night of Junior Prom in a hospital bed with a morphine drip plugged into my hand.
After the surgery, I went on with life.
I graduated High School. Went to College. Joined a Sorority. Continued Volunteering. Studied Abroad. Traveled. Graduated College. Moved far away from my home and friends. Got a job. Met a boy. Got a few promotions. Married that boy. Bought a house. Went to Grad School. Graduated from Grad School. Traveled some more.
I did it all with an invisible chronic illness.
Last year, I decided it was time to check up on it all. Check up on the surgery from 10 years prior. No real symptoms other than what's typical with Achalasia after surgery.
Chronic Illnesses are just that. Chronic. They may be treated but the body is always trying to get back to its state of normalcy.
Looks like my body is trying to do that too.
My Achalasia is not "back".
It's always been there.
My concerns were a little different. I was concerned about being able to eat. Why I kept throwing up? Why my tummy and chest hurt all the time? Why I had chronic sinus infections? Why I had acid reflux and heartburn that would show up at the most inopportune times? Why I was so incredibly tired and unfocused?
I was experiencing the symptoms of the 1 in 100,000 who have Achalasia, a rare swallowing disorder of the esophagus. In 2005, I was one of the 3000 people annually who were diagnosed with it. Average age of presentation of this disease is 50. Yes, at 17 it's very likely I was one of the youngest that year to even be diagnosed with this disease. I write these statistics not to distinguish myself as "special" but instead to help you understand how truly challenging it is to diagnose and treat, and how unique my particular situation is.
When I think back on those events even more, I realize that I was probably symptomatic since middle school around 13. My relationship with food struggled not because I did not like to eat. Trust me. I always did and still do love a good meal. My struggle with food came from not actually being able to eat it.
For approximately 4 years, 13 to 17, my symptoms slowly worsened until January of 2007 when I woke up in a pool of my own vomit from an undigested dinner from the night before.
I have to say what was entirely inconvenient about this for me was that I was in the middle of Swim Team season, Mock Trial season, and had just been named the local Junior Miss for my town. I was also in the middle of a killer school schedule filled with Advanced Placement classes. I was pursuing my vocal talents in lessons, church groups, and various events around my small town.
I am an overachiever. This knocked me back.
There was too much going on to be...sick.
My pediatrician immediately referred me to a gastroenterologist. The tests began. The vomiting continued. The weight-loss was apparent. My malnourished body sallowed my skin.
2 weeks later. Barium swallow. Immensely painful pressure. I vomited all the white chalk in my mother's car. That car eventually became mine 8 years later. No matter the cleaning...chalk does not come out of grey carpet completely.
The barium swallow showed an opening no bigger than the tip of a straw from my esophagus to my stomach.
2 weeks later. Esophageal Manometry. By far the most traumatic testing experience in my whole life. Tube goes up your nose and down your throat. In full exorcist style, I screamed and projectile vomited on the nurse. My dad was there for that one. He had to calm me down enough to try again.
The manometry showed no motility in the esophagus. Where there should be movement, there was none.
2 weeks later. Endoscopy with dilation. A good nap. I don't remember anything before but I remember afterwards. The gastroenterologist told me that my tissues looked healthy but that I was going to need surgery.
2 weeks later. Surgeon's office talking about laproscopic surgery to treat my condition that was only 3 years old at that time. Fortunately he had performed many of these in Florida. Surgery was scheduled for 5 weeks later. Heller Myotomy with Fundopilcation. While I can't see it on the outside, 5 scars remain on my tummy.
In these 3 months from diagnoses to surgery, I managed to lose another 30 or so pounds. My sister, who has always been petite in stature and I were sharing clothes because all of mine were too big and falling off my body.
My breakfast was Ensure and gummy vitamins. My lunch was applesauce and toddler crackers. My dinner was pureed soup. Yet I still managed to participate in Mock Trial, although in a different role than I would usually do. I still swam. Pretty sure swimming saved my spirit through this. In the water, I wasn't someone who was sick. I was free. I still helped with the school pageants and cheered my friends onto victories. I still sang lots and lots much to my sister's annoyance.
I still took the SATs. I took my practice AP tests. Everyone tried to maintain normalcy.
I was sleeping a lot. I was tired. I was hurting. I was afraid.
My friends, my school family (where my mother was a teacher) and my activities got me through this. People loved me through the ups and downs which I appreciate even more 10 years out. They are the friends who kept me laughing, held my books for me when I came back to school in a wheelchair, came to the hospital to visit and came to my house with smiley face balloons when I was couch-bound. They are the friends who loved my sister and took care of her when we weren't able to be our normal dynamic-duo. They are friends who offered prayers. There's the friend who sat at the hospital all morning with my family during my long surgery and came to sit with me before big procedures. Her Daddy (a surgeon as well) called my surgeon to check on my progress. (That girl is gonna be a Mama in January and that is one lucky little boy.)
I got up early one Thursday morning to have surgery.
I spent the night of Junior Prom in a hospital bed with a morphine drip plugged into my hand.
After the surgery, I went on with life.
I graduated High School. Went to College. Joined a Sorority. Continued Volunteering. Studied Abroad. Traveled. Graduated College. Moved far away from my home and friends. Got a job. Met a boy. Got a few promotions. Married that boy. Bought a house. Went to Grad School. Graduated from Grad School. Traveled some more.
I did it all with an invisible chronic illness.
Last year, I decided it was time to check up on it all. Check up on the surgery from 10 years prior. No real symptoms other than what's typical with Achalasia after surgery.
Chronic Illnesses are just that. Chronic. They may be treated but the body is always trying to get back to its state of normalcy.
Looks like my body is trying to do that too.
My Achalasia is not "back".
It's always been there.
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