I haven’t had a blog in awhile. Okay, that’s a lie. Over the summer I tried to keep up with a blog for my gastroparesis, but I was too sick to keep up with it. So much has happened in my life with then. I’ve received so many life changing diagnoses, so many devastating diagnoses. People have walked in and out of my life, I’ve made some amazing friends that care about me, that I care about, that know how to make me laugh when I’m curled up in pain, friends that I want to meet and keep for life. But enough about that.
My name is Emilia, and I’m 27 years old. I’m starting this blog to write about the ups and downs of chronic illness, aka my life. It’s not always going to be pretty, because despite what you might see on Grey’s Anatomy, chronic illness doesn’t come with perfect hair and makeup. In fact, it comes with many shower less days of laying in bed wishing you were dead from pain, unable to eat, willing your doctor to call you back and call some medication in for you.
I’ve been sick for a long time, but at first it wasn’t as debilitating as it is now. I was diagnosed with type 1 diabetes in 2008, when I was 18, but before that I was diagnosed with anorexia nervosa at the age of 12. Sucks, right? It’s always sad to see a kid with anorexia. My parents didn’t take it seriously so it went largely unnoticed until 2012 when I was triggered and it got worse. I spent most of 2012 in and out of treatment, finally able to recover for a small portion of 2013 and 2014. I relapsed, hard, in 2014, refusing to get better. However, I have gastroparesis as well. Gastroparesis is paralysis of the stomach, so my food wasn’t digesting and it was just sitting in my stomach. Because of this, I was bloating, and gaining weight from the bloat, but I was also beginning to vomit full meals. Messy, huh? Tell me about it. In 2014 I experienced a full relapse from my anorexia, that almost 3 years later I’m still in. But that’s not the end of my story.
In 2016, I was in a constant flare from my gastroparesis. The only way to get out of such a flare is to starve it. In the beginning of June 2016 i weighed 125 pounds. By the end of July that same year, i had dwindled down to 101 pounds. By mid-June i had lost 17 pounds in 24 days. The hashtag for gastroparesis is #starvingforacure, and it’s the most accurate statement about this disease I’ve ever read. People with this disease cannot eat, or at least many can’t. Many have feeding tubes, and I was being threatened with one. I did another gastric emptying study, to find out that my stomach emptied at 12% over 4 hours. To say the least, my stomach is a piece of shit.
In August of 2016, I had a surgery called a pylorotomy, which cuts your stomach muscle open so the food can flow freely through instead of having to contract every 2-3 minutes. I was in the hospital for five days, before going home for less than 36 hours. During those 36 hours, I couldn’t keep any liquids down, so eventually my mom brought me to the emergency room. I was immediately rushed to CT, then an NG drain was shoved down my throat – if you’ve seen an NG tube before, a drain is HUGE compared to those. It was like choking on a stick. I was then rushed to the ER because I had been diagnosed with whats called SMA syndrome – it stands for Superior Mesenteric Artery Syndrome. I technical terms, there is a piece of fatty acid in your stomach next to the opening of your small bowel, and if you lose too much weight, it looses the fatty part, collapses, and causes a blockage. In layman’s terms, I had an obstruction of my small bowel.
I spent the day in my local ICU before being transferred to the hospital that did my surgery. I spent a few days in their ICU before having surgery to place a GJ tube. This tube was the most problematic thing I’ve had in my entire life. It was painful. It leaked stomach acid everywhere. We had to tape the caps on so nothing came out. It clogged constantly. My medication never went through any of the ports. The feed constantly clogged it. We eventually found out that it was kinked in my jejunum, which is why it never worked. After a total of 22 days covering both visits, I went home the day before my birthday. The tube was removed a week later and I received a PICC line for TPN, or Total Parenteral Nutrition. I was ecstatic. No more messy tubes!
But of course, because it’s me, I had problems wit the PICC. The dressing was forever an issue, and because of where it was placed, it was forever peeling up. After two weeks it got infected and had to be pulled. Great! I was supposed to be gaining weight! Not like I wanted to, but this was giving me energy and nutrients without me needing to eat a single thing, because my gastroparesis was bad. But a week later I went to NYC and was able to eat without issues. My gastro issues came back around Thanksgiving, and I was hospitalized 3 times starting the week before Christmas, and ending in mid-February with a septic fungal infection in my second picc line.
That was when they gave me a port.
I know this is weird, saying I love a medical device, but I have never loved anything more than my port. I’m able to get blood draws without being stuck, I can do my TPN seamlessly without being interrupted by a bent arm and catheter. I mean, I have an insulin pump and sometimes I get no delivery alarms, and it drives me insane because I have to change out all the tubing and waste all that insulin! Plus with the port, if I go to the ER, they can just do labs and give me fluids without giving me an IV!
Now onto my new diagnosis’s.
In September, soon after my return to the world of the living, I noticed my heart rate speeding up whenever I stood up. I also remember being rushed to the hospital after almost passing out. I knew about POTS and dysautonomia from friends and my girlfriend, so I made a cardiologist appointment. I knew I would be coming out of the office with both as a diagnoses. And I did. I was told to see a specialist, who ordered me a tilt table test.
If you’ve ever had a tilt table test, you know the hell I’ve experienced.
In a tilt table test, you go from laying on a table to standing in less than ten seconds. You’re hooked up to an IV and a blood pressure cuff, that measures your BP and heart rate every minute. What they’re looking for is a change in your heart rate of more than 30 points at any given time, and to reproduce symptoms of POTS. If your body fails to do so in 40 minutes, you’re given a shot of adrenaline in order to do so.
My heart rate skyrocketed 63 points. I’m not sure when, but that’s what I was told. I was given a diagnoses on the spot, and my life hasn’t been the same. Life is hard. Getting out of my bed is hard. Walking around my house is hard, dancing is hard, everything is hard.
Dysautonomia is autonomic neuropathy. My brain doesn’t send out the right signals to certain areas of my body, causing them to not work properly. Things like my GI tract, bladder, spine, blood pressure, heart rate, bowel and bladder emptying, and digesting. Almost nothing is known about dysautonomia, and most patients are the ones who are teaching their doctors about it.
Then came Ehlers Danlos.
I’ve always been a flexible person, being a ballerina. I’ve been a ballerina for 25 years. I didn’t know why I, at 27, was suddenly able to do crazy, bendy, cirque de soleil things with my legs. I realized I had Ehlers Danlos syndrome when I looked up the Brighton tests, and passed every single one for hyper-mobility. Suddenly, my injuries from younger years made sense, as did my labral tear in my hip that I’ve had since I was 16. I constantly throw out my ankles just jumping and leaping in dance, and I easily have my splits and can pull my legs up and over my head. It just makes sense, and my sports medicine doctor confirmed it for me.
Recently I was diagnosed with intestinal failure and digestive tract paralysis, to round out my GI motility failures. My GI system is just a mess, I wish I could have a new system, oh and a new pancreas too would be nice.
All of this ties into my great love, Grey’s Anatomy. It’s my favorite TV show, and they do an amazing job of portraying so many diseases and disorders I have. They haven’t tackled POTS/Dysautonomia yet, but they’ve tackled Ehlers Danlos and gastroparesis before and both were fantastic episodes. Grey’s Anatomy is my entire world because they show case the struggle of what it’s like to be a chronically ill person, and have your good days and your bad days, which not everyone understands. Some people see me as having a good day and think, oh okay you’re not sick! This is so wrong. I’m still sick, but some days are better than others, and Grey’s shows this so well. My favorite character, Amelia Shepherd, even portrays this incredibly well, showing that as a recovering alcoholic and addict, some days in recovery are great, and others leave you begging for a few pills and a few drinks. It’s a give and take sort of thing. You give what you can, and take what you can get from life.
Just remember, life will out, always.