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.

Chronically Insecure

A lesser-known side effect of this awesome chronic illness journey I have been on my entire life is a whopping sense of self-doubt with every action I take in my life. This is something as small as what to wear (which can take 3 Pinterest boards, 6 phone calls to my sister, 8 outfit changes, and photo confirmation with at least two friends on any given occasion) or as big as where to live, who to date, any and all medical decisions, picking out a nail polish color... You name it. I don't often make decisions without TONS of preparation and research; unless I am having a confidence crisis and someone convinces me their decision is better than mine. I don't believe in myself and I don't trust my instincts.

Growing up I thought I was sick all the time. Turns out I was, but since what I was sick with wasn't a "thing" yet, everyone told me I was wrong and that I was fine. This was my mantra every morning when I woke up crying in pain or clutching my stomach or throat - I am wrong, I am fine. I am wrong, I am fine. I am a hypochondriac. Everything I am feeling is a lie. They tested me for the flu, they tested me for strep, my Mom diligently took me to doctor after doctor and they are smarter than me. They say I am wrong and that I am fine. I am wrong, I am fine. This has influenced my way of thinking for everything for my entire life. Every time I feel like something should change or be different I am reminded by my continual internal monologue that I am wrong, I am fine. If I don't feel good? I am wrong, I am fine. I walked on a broken foot for 6 days because I convinced myself it didn't hurt as bad as I thought it did. I am wrong, I am fine. I hung out with people who were bad for me, made fun of me, treated me poorly... It didn't feel good. It didn't matter because they were laughing so clearly I was wrong. I was fine. I allowed people I was peers with on every level (kindergarten through college and every job I have ever had) to make me feel bad about my skills and my abilities; of course they were right; I was wrong. I was fine.

I apologize. I always apologize. Doesn't matter what the situation is, doesn't matter who is involved or what happened, it's always the same; I am wrong, I am fine. I am sorry I was wrong, you are right, I am fine. I have a very clear memory of being asked to stay after class by a geometry teacher who had just yelled at the class for cheating and said she would find out who did it. I immediately began crying. I didn't cheat, nor did she think I did, she thought I could be trusted and wanted to talk to me. My immediate thought is always that I have done or will do something wrong. On the same line, confrontation of any sort has always been an issue because clearly I am wrong. I am fine. At one of my previous jobs there was a coworker who bullied me incessantly for my health issues, to the point of bringing me foods I was allergic to as a "joke", even ones that could cause anaphylaxis on contact. I would remind them gently that I couldn't have it and they would laugh and laugh. I had one coworker that I confided in that tried to get me to stand up for myself and eventually I broke her down, too, with my mantra. If you repeat it to someone enough they start to believe you, too. I am wrong, I am fine. It's fine. I am wrong, I am fine. It's all fine.

It's been 27 years of being wrong and being fine. The night I died I went to bed knowing I didn't feel right. I had texted coworkers telling them I didn't feel good and that I may be in need of some help the next day. I asked my roommate to check on me because I knew I did not feel good. I took my regular medicine and took pain medicine because I hurt and I knew I wasn't feeling good but in fairness I never am and if I always complained about being sick, I would always complain. I do not take pain medicine unless it is an emergency so clearly somewhere in my head I knew I wasn't fine, I just couldn't get that thought to the front. I pushed it back with all the "wrong/fine"s until I convinced myself I should just deal with it and get over it. The whole waking up three days later being extubated from life support changed my perspective a little. I was not wrong. I was not fine. I am never fine. I am always hurt, I am always in pain, I am always struggling.

I know this now, I do. It's in there. Pushing this to the front and beyond the mantra is going to take a lot of work. The problem with chronic illness is that other people's tolerance for it eventually runs out. They say, "I hope you feel better soon!" genuinely hoping you feel better soon; then a week goes by, then a month goes by, then a year... It's tiring wishing someone would get better and they just won't. So you stop sympathizing. Then you start thinking they could be better if they tried. Then you wish they would get over it. Then they lie, "I am wrong, I am fine!" It's easier and better for everyone if that's the answer. It genuinely feels that it's better to convince everyone and myself that I am wrong and I am fine. It gets to the point of being wrong and fine about every single thing in my life, not just health, because if I can't even be right about what I feel in my own body, clearly I can't know what's the right thing in any other situation.

I'm going to get over it eventually. I've started answering people with realistic answers when they ask how I am doing. "I am 4% away from total lung failure!", "I am on 32 medications a day for the foreseeable future and I just barfed 3 times!", "I am crying because not dying hurts and is very overwhelming!" ... Honestly it helps. I don't think anyone wants to hear it but if I smile and nod and say I am fine one more time, I don't think I ever really will be again. Maybe one day, confidence in the truth of my answers will become the confidence in my ability to recognize that I am not wrong and I am not fine; my confidence in my ability to recognize that may become confidence in my ability to fight to get where I need to be.

Chronically Overwhelmed

I typed this up originally to share with my friends who also suffer from chronic illness but have recently decided that in order to make myself feel better and to help people around understand what’s going on, a blog may be cathartic.

Please excuse my language but... Recovery is a bitch. Recovery from ANYTHING is a bitch, and here I am recovering from that one time a little over a month ago that I died.

Sometimes I just can’t. This whole positivity and “I lived! Yay!” thing is hard. I AM positive and I AM happy that I am not dead or on life support anymore; I also am overwhelmingly sad. I am so, so, so overwhelmed by how hard it is to get better. When I visited my pulmonologist AGAIN, he said, “Yeah, this is tough. I thought you would be better by now.” … So did everyone else. When all of my doctors refer to the reaction of medications in a “healthy 27-year-old” I wonder where this healthy person is coming from; I certainly am not her, I died a month ago. I died. And I can’t make it through a day of work. And I am on so many meds that I can’t go two hours without taking another one. And people have stopped feeling bad. It is like they were sympathetic for a while but they had to move on and I am still stuck here. Luckily my doctors believe me (I mean, they have the data) but it doesn’t mean they can figure it out or make me better; they just keep trying to throw things at me and I am still stuck here.

The realization that I felt sick the night that this all went down and my heart stopped has been terrifying... I always feel sick, I have a chronic illness. My daily pain level is a minimum of a 6. I am on maintenance steroids that are more than most people will ever take in their lives and regularly take anywhere from 12-32 pills every day; so sometimes even though I am sick I ignore it. I push through when the symptoms get bad because realistically the symptoms are always pretty bad. That night I felt nauseous, lightheaded, and a massive amount of migraine-type pain; but nothing that would indicate to me that my heart was about to stop. I have had to stop and remind myself that I need to pay attention to the pain and the illness and I need to take the time to rest.

I am sorry, I know this isn’t a happy post but I don’t know how to move forward right now. Fighting is harder every day that I have to call in to work and miss out on living because I am so busy not dying.



Still not dying from: eosinophilic esophagitis, mast cell activation syndrome, congestive heart failure (unknown origin), angioedema, cholinergic urticaria, aquagenic urticaria, and who knows what else.