For the past 12 years (at least) of my 28 years of life, I've been chronically ill. It's been in various stages, looked different ways, heck for most of it I didn't even realize I was chronically ill. Until I look back now and know what I should have been looking at. But I was.
I started out just like your typical kid. Active, rambunctious, annoying. Sporty, geeky, got into trouble a lot.
I was born with an ASD (Atrial Septial Defect--a whole in my heart for those of you who don't speak medical like I have had to learn to do) but it closed on it's own without surgery and I was told it would never be a problem, and it never was.
I started running on my school's track team when I was in 4th grade. I started playing bassoon when I was in 6th grade, after a short stent on flute (which I had to quit because I kept passing out--clue number 1). I was in choir. I was in a lot of clubs (marine biology, beta, academic bowl, student council, and more).
I got accepted to the Academic Magnet High School. I did a ton more clubs. And a ton more classes. I left for various reasons and went to the main public high school. I was even more involved. Student council again, astronomy club, environmental club, plus some. I was NEVER SICK ever, like no colds, no flu, hardly ever. I worked after school at the Piggly Wiggly.
I kept getting in trouble at work because I complained all the time that I hurt and my manager couldn't figure out how a 15 year old could hurt as much as I said I did. I got in a wreck when I was 16 and totaled my car, but I didn't have a scratch. About 3 months later I really hurt bad. I also kept getting in trouble a lot more at work because I couldn't stand up at my register anymore because I kept feeling like I was going to pass out.
I was only 16 and I kept asking for breaks every 30 minutes to sit down. What was this? Actually, I just thought it was normal, because I didn't know any different. I thought it was just part of "aging", how did I not know that all 16 year olds did not black out every time they stood up, or have their hearts race, or always need to drink water, always. I almost got fired for this several times. Especially since at this point I was an elite athlete on a junior Olympic team and managed to make it through grueling practices, but couldn't stand at a register for 4 hours and push buttons. How would I have known that standing still was contributing to blood pooling and the exercise was actually fixing my condition without me realizing it, but any time I wasn't exercising I was not getting worse, but not getting better either.
Fast forward 4 years, and I'm in private school 4 hours away from home loving life but so tired all the time and just can't figure it out. I know I can't do med school because of the fatigue so drop pre-med and go to religion and philosophy: outdoor ministries, pick up my own individualized major of music therapy and next thing I know I'm completely crash and burned. December of 2005 I get mono, and I never get better.
We think this is when my Dysautonomia fully triggered, but I wasn't officially diagnosed until June of 2012. This was after I graduated college, worked at several summer camps with it. Taught 2 years in a severe and profound special education classroom for middle school boys with autism with it and more. It's a very debilitating illness, but I fought for so long through it. And I'm still trying to fight, at least to get advocacy, and a degree to do something from bed :)
I also have Colitis and Celiac disease that we found in November of 2009. Fibromyalgia officially diagnosed in January of 2012. Endometriosis and PCOS diagnosed officially in January of 2010.
I've also been confirmed as having EDS type III by a geneticist and have had a whole bunch of genetic and metabolic tests to determine what further diseases I may have. We are strongly suspecting mitochondrial disease but the tests aren't back yet. I have also been diagnosed with a complete feeding dysfunciton and am on a feeding tube now full time. A J-tube to be exact which means I have a tube going into my jejunum (small intestine) and I don't eat much at all. I do good most days to eat about a cup of mushy or liquid food. The rest is formula through my tube.
So, as you can see, I've run the gamut of chronic illnesses and I'm sure they may be more to come.
But the coolest thing that I've got going for me is that I've got HOPE for my healing (Earthly or not) because I'm in a relationship with an awesome God!
So this blog is my story of my healing hopefully. Some days there are spiritual references. Some days there are far from it. But it's all my journey. And it's all healing to me, because blogging is cathartic. So here it is. A journey of healing hopefully and hopefully showing how "He makes beautiful things out of us."
"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:14
"...but those who hope in the Lord will renew their strength. They will soar on wings like Eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31
I started out just like your typical kid. Active, rambunctious, annoying. Sporty, geeky, got into trouble a lot.
I was born with an ASD (Atrial Septial Defect--a whole in my heart for those of you who don't speak medical like I have had to learn to do) but it closed on it's own without surgery and I was told it would never be a problem, and it never was.
I started running on my school's track team when I was in 4th grade. I started playing bassoon when I was in 6th grade, after a short stent on flute (which I had to quit because I kept passing out--clue number 1). I was in choir. I was in a lot of clubs (marine biology, beta, academic bowl, student council, and more).
I got accepted to the Academic Magnet High School. I did a ton more clubs. And a ton more classes. I left for various reasons and went to the main public high school. I was even more involved. Student council again, astronomy club, environmental club, plus some. I was NEVER SICK ever, like no colds, no flu, hardly ever. I worked after school at the Piggly Wiggly.
I kept getting in trouble at work because I complained all the time that I hurt and my manager couldn't figure out how a 15 year old could hurt as much as I said I did. I got in a wreck when I was 16 and totaled my car, but I didn't have a scratch. About 3 months later I really hurt bad. I also kept getting in trouble a lot more at work because I couldn't stand up at my register anymore because I kept feeling like I was going to pass out.
I was only 16 and I kept asking for breaks every 30 minutes to sit down. What was this? Actually, I just thought it was normal, because I didn't know any different. I thought it was just part of "aging", how did I not know that all 16 year olds did not black out every time they stood up, or have their hearts race, or always need to drink water, always. I almost got fired for this several times. Especially since at this point I was an elite athlete on a junior Olympic team and managed to make it through grueling practices, but couldn't stand at a register for 4 hours and push buttons. How would I have known that standing still was contributing to blood pooling and the exercise was actually fixing my condition without me realizing it, but any time I wasn't exercising I was not getting worse, but not getting better either.
Fast forward 4 years, and I'm in private school 4 hours away from home loving life but so tired all the time and just can't figure it out. I know I can't do med school because of the fatigue so drop pre-med and go to religion and philosophy: outdoor ministries, pick up my own individualized major of music therapy and next thing I know I'm completely crash and burned. December of 2005 I get mono, and I never get better.
We think this is when my Dysautonomia fully triggered, but I wasn't officially diagnosed until June of 2012. This was after I graduated college, worked at several summer camps with it. Taught 2 years in a severe and profound special education classroom for middle school boys with autism with it and more. It's a very debilitating illness, but I fought for so long through it. And I'm still trying to fight, at least to get advocacy, and a degree to do something from bed :)
I also have Colitis and Celiac disease that we found in November of 2009. Fibromyalgia officially diagnosed in January of 2012. Endometriosis and PCOS diagnosed officially in January of 2010.
I've also been confirmed as having EDS type III by a geneticist and have had a whole bunch of genetic and metabolic tests to determine what further diseases I may have. We are strongly suspecting mitochondrial disease but the tests aren't back yet. I have also been diagnosed with a complete feeding dysfunciton and am on a feeding tube now full time. A J-tube to be exact which means I have a tube going into my jejunum (small intestine) and I don't eat much at all. I do good most days to eat about a cup of mushy or liquid food. The rest is formula through my tube.
So, as you can see, I've run the gamut of chronic illnesses and I'm sure they may be more to come.
But the coolest thing that I've got going for me is that I've got HOPE for my healing (Earthly or not) because I'm in a relationship with an awesome God!
So this blog is my story of my healing hopefully. Some days there are spiritual references. Some days there are far from it. But it's all my journey. And it's all healing to me, because blogging is cathartic. So here it is. A journey of healing hopefully and hopefully showing how "He makes beautiful things out of us."
"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:14
"...but those who hope in the Lord will renew their strength. They will soar on wings like Eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31
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