Tubes, tubes, and more tubes

Having chronic illnesses isn’t easy. I’m constantly told how brave I am, how amazing I am, how strong I am. Let me tell you, you don’t feel brave, amazing, or strong when you’re puking up a Starbucks frappuccino in your GI doctors office (this actually happened to me a couple hours ago). You feel weak, letting your illness overwhelm you in such a way. You feel helpless, knowing that no amount of medication is going to stop the vomiting, nothing will stop the pain in your gut, and nothing will get the disgusting taste out of your mouth.

Around this time last year was when my gastroparesis first became more than just this annoying thing causing bloating and regurgitation. It became this thing that caused me to put on 25 pounds in a day, that made everything from my knees down swell painfully and rock hard from edema, and made me want to die in general from the way it made me feel. It was this time last year that I stopped eating for my health. Yes, you heard me. For my health. You see, one of the only ways to get out of a gastroparesis flare is to starve it. You starve away the bloating and water retention. You do liquids only, and limit the salt (that came back to bite me in the ass in the form of POTS). In ten days, I had lost 18 pounds. By August I had lost 25 and my GI doctor decided I needed a pyloroplasty, where they cut open your stomach muscle so that it doesn’t have to contract every 2-3 minutes to let the food flow through.

I was told the surgery was a success. I was in the hospital for five days, before I went home. I laid in bed in pain, vomiting for 36 hours, before I was rushed back to the hospital. I was diagnosed with Superior Mesenteric Artery Syndrome, or SMA Syndrome, for short. This basically meant I had a blockage of my stomach to my bowels. A NG drain was shoved down my nose (it stayed there for 5 days) and this was my first tube. It was the most uncomfortable thing I had ever felt. Constantly swallowing with a tube down my throat was horrible, and I was glad to see it go.

But it was replaced by a GJ tube.

This GJ tube was the bane of my existence. I woke up from surgery after a nurse yanked my intubation out, leaving me screaming from the pain in my throat, until I realized how much my stomach hurt. Every time I screamed, I could feel the tube seemingly suck against my back. Weird to explain, but that’s how it felt to me. I remember screaming and crying for an hour, and no pain medicine would help me.

Cut to the next two weeks of hell. They tried starting me on feeds the next day, at 5ml an hour, and even that was too sensitive for me. I think I only got up to 15ml an hour before it started alarming, and that was the start of the never ending clog-unclog-reclog cycle that was my GJ tube. I never got anything in my, and I dropped dangerously down from 101 pounds to 90 pounds, because I wasn’t getting any food/nutrition in me, only ‘comfort foods’ like broth and water ice, and that ran out whenever I vented the G portion. They tried to pull the J tube out at bedside, but it was still sutured in so they literally had to shove it back in, which hurt like hell. Eventually they did an X-ray, and found out that it was twisted and kinked in my jejunum, and that’s why it was getting clogged so much. I was eventually sent home with the tube the day before my 27th birthday.

The following Monday I found myself in the ER, because we were pulling green gunk out of the tube with a syringe, which wasn’t normal. My doctor downtown was frustrated and we finally got me set up for a tube removal and a PICC line to be placed, with TPN set up.

I loved the TPN. It gave me freedom to do what I wanted. I could disconnect and go to dance class if I wanted to, even if I had a bit of movement restriction. I was so malnourished and skinny, it scared me, a recovering anorexic, but eventually I started to build muscle again. However, I wasn’t gaining weight and I seemingly had an entirely different body type than I previously had (I still can’t gain weight and I still have this impossibly small body – it’s like a pre-teen before puberty).

My picc line got infected after two weeks, and I stopped TPN and began eating again. I went away to NYC for a weekend and was able to tolerate everything, eating to excess, and I was fine. I was fine until a week before Thanksgiving, when all my symptoms hit me like a truck again. I was barely able to eat Thanksgiving dinner before getting sick and crawling into bed. It continued this way for a few weeks before I landed in the hospital the week before Christmas. I was begging for the TPN back, but they thought it was all in my head because there were no physical signs of me being sick. So what did they do? They called psych on me. And one of those doctors was one I have a horrible relationship with. They told me it was all in my head. Literally. So I made them do another gastric emptying study and guess what? It showed up that I was delayed again. So fuck you still, it’s not in my head.

I went home and ended up in the ER a week later, and a few weeks after that I ended up on TPN again. That time, however, I ended up getting a septic fungal infection in my picc line, and was in the hospital for 12 days. That was when they decided to stop screwing with picc lines and gave me a power port.

Since February, I’ve been doing TPN with my port successfully. I absolutely love my port – I was in the hospital three weeks ago and there were no needle sticks – everything is through the port, even blood! I can wear long sleeves, I can take off my shirt, everything is so freeing. My port is the best medical device I have besides my insulin pump.

Today though, I had an appointment with my GI. Things haven’t been going so great. Sunday night was somewhat of a deal breaker – I cried on my moms bed to her for almost an hour over how nauseous I was, and I knew things weren’t looking good for me. My handle on food is getting increasingly bad, to the point where I’m basically playing Russian roulette with my stomach – it’s give or take whether it’s going to go sour, but lately everything is horrible. I almost ended up in the ER Sunday because of uncontrollable nausea.

Anyway, today. I spent a lot of time with the nurse practitioner before my doctor came in. He was solemn and upset, telling me that he has no idea what to do with me, that nothing is happening the way he wants it to (you’re telling me, Dr. Cohen!) Honestly, don’t tell your patient that, because chances are they already know and they’re already as fed up as you are. We discussed tube options – I want a separate G and a J, but he wants a GJ again. We battled back and forth, with him getting annoyed at me seeking help in friends and support groups, and referencing my other diseases, which outrages me. My other diseases are important and central to my gastroparesis. They affect it, they affect the seriousness of it, and they affect the outcome of it. I also believe that my tube options should be my choice since it’s my life, my lifestyle, and I’m the one who has to live with the damn thing.

So, on the 20th my mom and I go back to him and I learn my fate. But since August, my life has been nothing but tubes, and I only foresee tubes in my future.

But you don’t look sick…

To the every day observer, I look like a normal 27 year old female. It isn’t until you spend time with me or get to know me that you learn I’m everything but. Not everyone notices the port a cath installed in my chest, just below of collarbone, or the backpack I sometimes tote around with my feeding tube. You don’t see the insulin pump hiding under my clothes, or the countless pricks on my fingers that have tested my blood sugar. You don’t see the anti emetic patch on my arm that helps my nausea and helps to keep me from throwing up. You don’t know that I’m struggling to breathe and just keep myself upright.

That’s because all of my diseases are considered invisible.

Diabetes, gastroparesis, ehlers danlos syndrome, dysautonomia, POTS, digestive tract paralysis, and more. All severe and debilitating, yet no one can see them on the outside. They’re hidden, invisible, all the while ripping me apart and killing me on the inside, slowly, ever so slowly. But no one can see these, unless I’m having a particularly bad day. It’s why I get asked why I’m never in class, why I can’t get out of bed, why I can’t come hang out with my friends all the time.

I recently came across a handy image of how to tell EDS pain:

I cried last night, realizing that I function at a 20. I lay in bed all the time, I get out of bed to get my medication, go to doctors appointments, sometimes run to Starbucks. Sure I have friends, but I don’t see them. I have family commitments, but most of the time I don’t feel well enough to go to them. My niece and nephew are having their first holy communion Saturday, and i even picked out a dress to wear to it. And I even want to go. But I know I’m going to end up falling asleep in my nieces bed, too tired to handle the 42 people in the house. My stomach won’t be able to handle any of the food there, I’ll have one glass of wine and I’ll be done. I can’t go to dinner for my brother in law’s birthday because it’s at a BBQ place and just the smell will do a number on my stomach.

But for the communion, I’ll look nice. My dress is pretty, it’s a Free People number I got from Poshmark. Lace all over. Pairing it with flip flops because I’d fall from heels now. I’ll straighten my hair, I’ll do my makeup. No one will no I’m sick. Because I don’t look sick, right?

I feel like that’s how so many people in the chronic illness community look and feel. So many of us are invalidated. One of my best friends fits this category.

She’s been my best friend since 2013. Funnily enough, she came to visit me from Australian several days after my first hospitalization for gastroparesis. At the time, I did not know how serious my gastroparesis would become. I only had gastroparesis, and at the time she had chronic pain, but beyond that, we were both chronic illness free. I would post a picture, but out of respect I am keeping her anonymous (although many readers probably know who I am talking about).

Cut to 2016. She has EDS, gastroparesis, POTS, dysautonomia, a chiari malformation, cyclic vomiting syndrome, and more. She came to the US for treatment because treatment in Australia is nonexistent. Doctor after doctor after doctor refer her to psych because they tell her there is nothing wrong with her, while she cannot keep down the bare minimum of food and water. Some refuse to treat her. Some arrange to have her sent to the psych ward because they believe she has a fear of food or water and it’s turning into an eating disorder. At this point, she cannot eat or drink, but no doctor will do a feeding tube or port, despite the alarmingly high amount of weight she has lost. Why? Because she doesn’t look sick to them. Her blood work doesn’t show he’s malnourished. Her mother, who works in nutrition, is furious that everyone is brushing this off, like there isn’t anything wrong with her, when it’s very obvious she’s extremely sick and needs immediate fluids and at least TPN. But no one in all of Australia will treat her.

It isn’t fair. I want more for my friend. I want more for everyone who has these diseases. People deserve to be treated equally.

And then there’s the AHCA…

I know it’ll probably never get passed in the Senate, but the House alone makes me furious. So many of my chronic illness friends will be losing their healthcare and that’s not okay. But I’ll talk about healthcare in another post.

Back to not looking sick.

I carry around a backpack. Inside my backpack are a pump, my tpn, a long tube that hooks up to my port, a huge stockpile of flushes, alcohol swabs, and batteries. I am tube fed. A tubie. Tubed. Whatever you want to call me. Am I ashamed? Why should I be? It’s keeping me alive. Without it I wouldn’t be able to survive. I eat, I throw up, I take laxatives, I cleanse my system of food that would otherwise stay inside of me for days or weeks. I get yelled at by my mother for the laxatives, but how else am I supposed to get the food out? This is just my life.

Another invisible disease is Ehlers Danlos Syndrome. Ironically, it’s Ehlers Danlos Awareness Month. To most people, they just think people wth EDS are flexible or bendy but it’s so much more than that. Its the ligaments, the joints popping out, the subluxations, the dislocations. Some friends I know wake up with joins out of place every day. That’s only happened to me once: I was actually in the goddamn hospital and my hip was out of the socket, and I fell over. While a nurse was in the room to transport me to my port surgery. They did absolutely nothing. As a friend said “One time we had to use a sheet to get my leg back in the socket. Afterwards, we called the hospital and told them. They told us I didn’t have to come in. If I told them my hip had fallen out and I also had cancer, they wouldn’t sent an ambulance.” The sad truth is that cancer pain is treated before EDS pain. EDS pain goes largely unnoticed/treated/cared about.

EDSers are called Zebras, because it’s so rare to come across an actual case in your medical career. It’s such a rare disease, and yet if you have dysautonomia, you’re very likely to have EDS. And it’s such a bitch and a half to have.

Zebras around the world, unite this month, in our invisible disease.

Chronic illness warriors, remember: we may not look sick, and that’s the reason why we have to advocate harder and harder for ourselves.

#chronicillness #ehlersdanlossyndrome #gastropareisis #dysautonomia #chronicpain #chronicfatigue #zebrapride #teamzebra #POTS

Walking in my shoes

Sometimes I wish people could take a walk in my shoes.

30 seconds. A minute. Five minutes. A day. A lifetime.

I don’t know how long some people would last. Probably not very long. What I deal with on a daily basis is difficult. It’s hard. It’s not for the narrow minded or weak-stomached. There’s a lot of nausea, a lot of dizzy spells, a lot of vomiting. There’s a lot of needles, a lot of alcohol swabbing, a lot of anti-emetics, and a lot of medications that just don’t do what they’re supposed to do.

There’s a lot of giving up, and a lot of lost hope.

People tell me that I’m inconvenient to their life. That my medical conditions are too much for them and they don’t want to deal with me. That I drag them down too much and it’s too much for them to have me in their lives.

I have feelings too. It hurts me, too. I’m still a human being, underneath the needles, the tape, the heart monitors, the insulin pump.

I. Am. Still. A. Person.

I don’t think people realize this, that their words and actions hurt me even more than they would a ‘normal’ person, especially because I try so hard to live a normal life. I try so hard to live my life around my TPN schedule, low blood sugars, POTS episodes, and more, that when I hear about someone being intolerant about my diseases and disorders, it crushes me to the core.

I’m still human.

Here’s what a typical day is for me:

I wake up after 12, usually, because my medication takes hours to work at night due to malabsorption issues. Sometimes they work quickly but other nights they can take 4+ hours. So I wake up after 12 – sometimes I can wake up at 5 pm. If I have class that day, I’ll set my alarm for early in the morning and see how I feel. My TPN usually ends between 8-10 AM, so I end the session and turn my pump off.

Usually I lay there for awhile, checking all of my social media, sending replies to people, unless I was woken up by a low blood sugar. I started keeping a bottle of juice by my bed so I don’t have to leave my bed to treat a low and risk hurting myself.

Then I get up for the bathroom. If it’s a good day, I’m not dizzy and I don’t crash into anything, and I can pee right away. But if my POTS symptoms are bad, I crash into walls and doors, and pieces of furniture, and it takes at least ten minutes to urinate due to bladder paralysis/retention. Then I get back in bed and read, or turn on my TV to Grey’s Anatomy on Netflix.

I’ve mentioned this before, but Grey’s Anatomy is my favorite show. In another post, I’ll talk about how I recently met Kate Walsh, the actress who played Addison for 9 years on Grey’s and Private Practice. Since becoming sick, I play a game (that’s really only funny for people with chronic illnesses) where we joke that if they mention a disease, disorder, test, or medication we’ve tried, have had, have, or are on, we take a shot of a common laxative called miralax, for shits and giggles. There’s actually an entire episode on gastroparesis, and we joke that we need to drink the entire bottle of powder.

Anyway. Usually I spent most of my day in bed watching Netflix. Literally. Until 2-3 am. Unless I have some sort of doctors appointment. This coming Monday I see my endocrinologist and my acupuncturist, which uses up spoons (check out The Spoon Theory right here! It’s vital to my existence) and will leave me exhausted.

Speaking of exhaustion, I generally nap once or twice a day. It’s pretty exhausting, doing nothing at all. Having chronic fatigue syndrome and not getting enough calories per day leaves me exhausted, so I take every chance I get to sleep, especially if I’ve gone to dance class that day. Just tonight I ate dinner (and kept it down somehow!) and needed a nap afterwards because eating exhausted me, if that’s even possible.

Then there’s so many things that factor into how I’m feeling. Blood sugar, temperature, intake of fluids, whether I’m bloated or not, the state of my digestive tract, how my stomach is emptying, my mood – literally anything and everything affects me how I feel on any given day. Even my dogs running in and out of my room, barking at me to be picked up and put in my bed, can throw me off.

If I had a choice my days would go so differently. I would get up and go to class, dance for 7 hours every day, go to all of my rehearsals, and I would be dancing in my dance company’s show next week. People wouldn’t feel inconvenienced by me, I wouldn’t have to rely on my parents for money and support, I would be able to move out of my mothers house, and I wouldn’t have to go on disability.

But my reality is different. I may never get married. I will never hold my own baby in my arms. I will never be able to live on my own because it’s too dangerous for me. I can’t work. Not now at least, and probably not in the future. I can’t earn my own money.

And I’m just one huge fucking inconvenience.

So take a walk in my shoes before you say something insensitive and rude.

Feeding Tubes

When I was diagnosed with gastroparesis, the last thing I ever thought I’d end up on was a feeding tube. I was told to take a double dose of my acid reflux medication, and if I was having more issues, then to take Reglan – a medication known for a very damaging symptom called Tardic Dyskenesia. I did what I was told, I took my medication. My first stomach emptying test came back at 88%. That meant that my stomach emptied at 88% over 4 hours, which meant I had a very mild case of gastroparesis.

Later that year, however, I relapsed hard from my anorexia, remember? Not even much later, it was in the next three months. I began drinking with little to no food in my stomach which was the worst thing for me and my gastroparesis. I would begin to vomit non-stop and suddenly I was losing friends because I as ‘toxic’ from my eating disorder. I’m not going to lie, it hurt.

2015 didn’t start out badly with my gastroparesis, but I did hit my lowest weight from my eating disorder. Slowly though, I started to gain weight, and with it a lot of bloat, and I realized it was from my gastroparesis.

By the time I attended Dragon*Con, I was 106 pounds. By the time I came home, I was so flared from my gastroparesis that I weighed 122. My lower legs, feet, and ankles were swollen from edema, as were my face and hands. I took some diuretics and slept with my feet on a pillow to keep things controlled. At NYCC, it was the same way. It hurt to walk, some of my costumes were painful to wear, and I was just miserable. Thank god for adjustable Sansa Stark costumes, right?

LI Who 3 was the worst. My stomach had ballooned to the point where my skin was hyper-sensitive. It hurt to touch it, and it bend over. I remember our last night we were helping a friend shoot some B-Roll for a student project, and my friend A had to lace my Amy Pond Doc Martens for me because I couldn’t bend over to do it.

Two weeks later was Thanksgiving, and since I worked at Target, I worked Thanksgiving night. Having had Thanksgiving dinner, I was queasy as hell. I lasted barely any hour before I shut down my register and ran into the bathroom to puke. My LOD told me to go home, and while I was sitting in my car trying to calm down, I had to open my door twice to vomit into the parking lot.

I’m not going to lie, I went Black Friday shopping with A once I got home and changed. I’m a shit like that.

However, my body couldn’t take it any longer and I researched gastroparesis specialists at Thomas Jefferson University Hospital. The first one that came up I made an appointment with; it turns out that my mother grew up nannying his children and he lived a few houses down from them! Since then we’ve become very close, and I know I can text him with anything.

But back to the feeding tube situation. I met with him January of 2016, and he did an endoscopy with Botox. I was able to eat, but was still severely bloated. This kept happening right through June, where I spent the day in Philadelphia with a friend, showing her the sights. She’s a history lover (and a Hamilton lover), so she wanted to see everything. When I couldn’t run up the beloved steps of the Art Museum Rocky style, I knew there was a problem My stomach was distended, and again my legs, ankles, feet, face, and hands were swollen from edema.

That was the day I decided to stop eating.

I’ve said before that our mantra for Gastroparesis is #starvingforacure, and those words are more than true. I know women 60 pounds and starving because they can’t even tolerate feeding formulas, their stomachs are that far gone. I know girls who’ve died of the disease because their insurance companies have denied them coverage. And then there’s me.

I dropped 18 pounds in the first 10 days. I napped constantly. I tried to drink ensure, but drinking more than 1 made me sick. I was dehydrated and felt faint constantly. Do you know how hard it is to force yourself to drink water when you’re starving yourself? Do you also know how hard it is to purposefully starve yourself rather than your brain forcing you to? Anorexia vs gastropareisis is a terrible thing, and then anorexia took over, and then it was both diseases.

I did another stomach emptying test, and this one came back at 12%. My crappy stomach worked at 12%, digested at 12%, did everything at 12%. The people running the test were so shocked because I simply stopped digesting at 2 hours out of the 4, and called my doctor because they were worried I had a blockage. He had just seen me though, and knew I didn’t have a blockage, so they let the test go on. Meanwhile…

When I called my doctors office and told them I hadn’t eaten in 5 weeks, they booked me for an endoscopy two days later. They didn’t find anything but did more botox. I was then referred to a general surgeon for a pyloroplasty.

The surgeon..let’s just say she wasn’t Meredith Grey. She was a raging bitch and I hated her. She suggested a feeding tube after surgery but I freaked out and said I’d think about it.

On the day of my surgery, August 17th, I arrived at the hospital at 6:30 am. By 8 am or so I was in the OR, intubated. I don’t remember what time I came out, but I had an NG drain down my throat and a PCA pump of dilaudid to press every 6 minutes. My stomach hurt. I couldn’t pee for three days. Everything hurt.

They pulled the NG out after a day, and the huge gauze bandage off my stomach a few days after that, to expose the steri-strips on my stomach. I had four scars and then one point in my bellybutton. I hated them. But I went home after five days and I was so excited. Except…

I ended up in the ER less than 36 hours later. I was vomiting non-stop and couldn’t even keep water down.

I was quickly diagnosed with SMA syndrome, and given another NG drain. I was sicker than I had ever been in my life. I had a severe stomach blockage due to losing so much weight so quickly, and in the middle of the night they rushed me back to Jefferson. I was so out of it, I don’t even remember getting back to Jefferson. I laid in bed, sometimes being transferred (painfully) to a chair, where I’d just fall back to sleep. I was in their ICU for 3 days, and then spend over two weeks in a bigger step down units. After being there for five days…I was taken to get my first tube.

I was given a GJ tube. Most people do well on these tubes, but mine was hell from the beginning. I woke up because they were taking the tube out of my throat, and it hurt like hell. It wasn’t a gently detubing, it was a “i’m going to yank this tube out of your mouth as hard as I possibly can”. After that, I was in so much pain I was screaming and the nurse was the biggest asshole – which is one reason I hate male nurses. I feel many lack compassion. I was just told to shut up and stop screaming, but YOU try having a foreign plastic object in your stomach all of a sudden!

I went upstairs and they gave me more medication, but I was just in agony. They didn’t start feeds until they next day, and I don’t remember when it started clogging, all I remember is that it clogged and didn’t stop. We were always able to get it unclogged until one day when the tube just gave up and I was expected to deal with it.

Not okay. How do you tell a patient to ‘deal’ with a faulty tube when she can’t eat?

I went home 9/8/16, the day before my 27th birthday. I spent my birthday in bed, with my cake brought to me. I don’t even remember if I could HAVE cake, but I know I was surrounded by my siblings, parents, and nieces and nephews, and was drugged out of my mind. Monday I landed in the ER again because we were pulling green gunk out of my jejunum, and my GI doctor had had it. He scheduled me to get a picc line for TPN and to get my GJ removed!

The picc proved to be it’s own issue. After only two weeks I got an infection and it had to be pulled. Bye bye, tube feeding.

I was able to eat, though, and when I went to NYC for NYCC I ate. And ate and ate and ate. There was no end to my eating, and I didn’t gain a thing. It was amazing. But around Thanksgiving, my symptoms came back. Bloating, severe weight gain with food. Doctors brushed me off until I landed in the hospital before Christmas. With that hospitalization came a psych consult, because they thought I was making up my symptoms. I was furious. I ended up in the hospital again on New Years Day, and then again a month later, for 12 days.

When I was in for 12 days, I had a septic fungal picc line. I went into DKA the second night there with a blood sugar of 743, and was rushed to the ICU. To say my stay was scary is an understatement, but I got an amazing thing out of it: a port.

In my last post I said that my port is the best thing I’ve had, and it’s true. It’s made my life so much easier. They take my blood from it, they run saline through it if needed, and most importantly, I feet into my chest/heart from it. I’m able to do my TPN, which stands for Total Parenteral Nutrition and is another form of a feeding tube, whether by port or picc/central/hickman line.

I am a Spoonie Tubie and I’m not ashamed. In public I carry my TPN in a pink floral Vera Bradley backpack and I am not ashamed when my tube shows. Why should I be? It’s a part of me, it’s an extension of my body, and it’s keeping me safe and nourished.

The thing is, though, I will always be underweight. At 101 pounds and 5’4′ I’m more than underweight. Sometimes I catch a glimpse of what I really look like and it scares the hell out of me. I look like I have a bobblehead. I’m malnourished. I don’t fit in the clothes of an adult.

But I’m alive, and that’s what matters. I don’t have to starve myself in order to feel better with my stomach anymore. I have zofran in my TPN bag that helps me with that, among other forms of anti-emetics. I may or may not always need a tube; we don’t know that yet, but for now I’m a tubie, and I’m not ashamed.

Life will always find a way to have an out.

xx Emilia

A fresh start

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.

 

xx Emilia.