First things first, I'm the illest

I've been up since 2:30 in a decent amount of pain. Today is day 6 of throwing up blood due to ulcers in my stomach and intestines from all of the medications I have to be on to keep me alive. Explaining the stress that causes, the pain, the general overall uncertainty in anything in my life; it's hard. It's hard to explain that because I am sick EVERYTHING else seems more difficult. It was 2:30AM when I woke up and in between the vomiting and the severe pain flares I went through my previous FaceBook posts. I do that sometimes to read about what happened to me in  December as a processing mechanism, but this morning I just kept going and I realized how long I have been dealing with this. I try my best to take it one day at a time because it seems impossible to accomplish anything with the realization that chronic means forever; but I have been battling a "flare" since 2014. I have been hospitalized at least once every other month for two years. That's not normal, that's harder to get through than it seems.

Yes, being sick itself is hard. Being sick ALL THE TIME is hard. I remember a running joke I had for myself whenever anyone would say, "You're always sick!" I would respond, "Oh my gosh, I am? I didn't notice!" ... because high school Erin was hilarious; but really that's how it is and how it has been my whole life. I am always sick. That changes so many things for me, I am insecure in so many ways because of it. That changes how I approach people, serious topics, work, and life. Not only do I push myself to go above and beyond at work because I worry if I don't make myself invaluable I will lose my job, I don't put my best foot forward with new people because I don't want to get invested for them to realize how sick I am and leave, I constantly apologize to my friends for literally everything, and I downplay any type of symptom I have or difficult issue with jokes and sarcasm so that people don't get scared off ... It takes over.

Luckily I am getting a lot better at the adjustments that have to be made when things like this happen. If I hit a snag or something happens in the worst possible way (how I continually think it will), I have a great support system in place and some of the best friends I could ask for that are there for me no matter what. The reason I keep posting about what is going on is that I have had an overwhelmingly positive response to my posts and my blogs; from people who have chronic illnesses that I didn't know about and from those in my Spoonie community. It's one of the better ways I have found to adapt to this huge life adjustment of being constantly fighting - putting it out there so others can see I am trying my hardest and those that need it can see they are not alone. It helps me process to post things every day, including pictures and selfies, just because it humanizes the issue (even to me) and puts a realness out there that I have a hard time grasping when I just want to go back to being a healthy and normal Erin.

So this current flare - on the heels of a WHOLE MONTH of being well and back at work - it's a little bit emotionally devastating and super physically draining. But one day at a time I can make it through this one. I can and I will; I was out for a week, had an emergency surgery, had 6 IVs so far this week, added three medications to my already plentiful and never ending pill case, haven't had food stay down in 3 days without a little bit of blood vomit, and I am getting through it. I did everything they asked me to do - we actually got an answer to why it was happening this time (though the medications may or may not help at this point), and I can make it. I can get through one more day. Every morning that I wake up is an easier day to get through than that one time I didn't, so I am going to push my way through it to get to a better one.

Chronically Deflecting

Serious situations are serious.

That's a sentence I repeat to myself when people get annoyed with my reactions to the information they are giving me. I don't handle serious situations very well because they are, in fact, serious, so I joke. I take hospital selfies, I joke, I laugh, I giggle; when I am uncomfortable or sad I deflect.

I don't know when this became my coping mechanism; I have done it for as long as I remember. People are uncomfortable when they find out that I am sick because I don't immediately LOOK sick. It's easier if it's not serious, so being the massively overcompensating people pleaser I am I try to make it as easy as possible. "Oh yeah my throat is mostly scar tissue due to years of untreated eosinophilic esophagitis and I can't eat food but plus side, built-in diet for life!", "My lips are swollen due to a minor allergic reaction that means my face and lips will swell for at least a few hours if not a few days. Angioedema bonus: it's like lip injections but without the chemicals or cost!" If it's a joke, it's funny. If I joke about dying, it's funny; it's not a thing that really happened. I deflect.

People tell me I need to recognize that I am strong, that I am inspiring... I don't feel like either of those could possibly be true. I am simply waking up every day to the struggle of reality (that is, if I have been able to sleep). I wake up to the reality of being alone in this, because no matter what even the people who are there for me can't always be there. They have REAL life; real work, real families, real reality. My reality is being sick. Each morning I wake up weighing the sickness and the health and reminding myself that this is not a reality that anyone is going to willingly choose to be around day in and day out for the rest of my life. The realty that the rest of my life might not be that long; because I am struggling to get out of bed each morning and oh yeah, there's already that one time I died, so it's not outlandish for me to think about dying every time I go to bed or every day that I wake up in pain and with a fever of unknown origin. It's just hilarious to me that they found a mass on my liver while doing a scan to check for a pulmonary embolism because OF COURSE they did. If it's not hilarious, do you know what it is? Reality. Really really real reality; and that is really ridiculously terrifying. I can't handle that reality all the time; it's my reality when I am alone. So when I am with people, I deflect. I make it easier for them to make it easier for me. I am not in control of any of this and that makes me feel selfishly helpless and I don't like that feeling.

I think what makes it even more impossible to deal with is the rarity. It’s not that I don’t understand that eosinophilic esophagitis is becoming recognized more and more; that it has gone from 1:10,000 to 1:1,000 – it makes me genuinely happy that this is the case. It’s the fact that beyond the EoE they can’t seem to diagnose the other issues that are happening. They recognize that I had eosinophilic infiltration of the lungs two years ago. They recognize that my blood eos have measured high. They are now calling my heart event eosinophilic infiltration of the myocardium. That’s cool – what is going on?? Why is this happening? Why is it that my Mom can get upset that the emergency personnel don’t know what eosinophilic disorders are and be told by someone IN the EGIDS community that it’s because it is not important for them to know that because eosinophilia is not life threatening? Tell that to my body; tell that to the fact that I was treated as a drug overdose, then sepsis, then a viral infection; and a whole MONTH after my heart stopped they decided to run tests to see if it was maybe eosinophilic infiltration. If it wasn’t so rare and so debated then the cardiac MRI that a team of cardiologists argued over would have been pulled sooner and examined for the right things, namely what they finally looked at it for; eosinophilic infiltration.

It’s amazing that people within even a community of rare diseases can disagree on the proper amount of education that the medical community should receive but that and spending another night in the ER with doctors who didn’t understand because I kept vomiting up my medication which leads to more chest pain because, I don’t know; my heart stopped recently and hurts a lot and when you vomit your heart and chest pain meds (best miracle ever), it made me realize that maybe I am a little bit tougher than I give myself credit for. The fact that when she came to give me my discharge papers my nurse sat down to give me a talk about how strong she thinks I am for dealing with my "stuff - because you have a LOT of stuff" - that hit home. She's an ER nurse and she sees a LOT of stuff; to take the time to tell me my attitude was impressive means something to me. I don’t know if I will ever accept “inspiring” as a word to describe me but I might accept that I am strong. I am still going to deflect and joke because it makes things a little bit easier when you spend all of your days getting poked and prodded and messed with, filling out the same forms over and over because your doctor got to the end of his knowledge but knows something is wrong so he’s going to send you to another specialist who may or may not know what’s going on and may or may not send you to someone else. Plus side, I am excellent at filling out forms and I get to travel!

What it all means is, if there is ever a moment where I am truly sad about all of this, where I let myself accept it or understand it or talk realistically about it... Don't deflect. Don't tell me to be positive about it, and that positive thinking will help me. Don't give me inspirational quotes and examples of how you relate to me because you were recently on a gluten-restricted diet for Lent. Don't tell me that we will fix it because in reality, this is a rare disease for which there is no cure. If I take a minute to let it be real, I need that minute to be real. I need you to be real with me. And I probably need a hug, or a comforting touch, or someone to hold my hand. Let it be real, and let me be overwhelmed by it. I'll come back around, just let me.

**Please take a moment to recognize all rare diseases for World Rare Disease day. Visit Global Genes on FaceBook or at globalgenes.org -- and please consider making a donation to an organization dear to my heart: CURED. They have donated so much towards research for eosinophilic diseases and are making a huge difference in the EGIDS community. You can donate at curedfoundation.org.