Everyone has a Story

Chronic.

Chronically.

Chronically ill.

I’ve been diagnosed with EoE for roughly a year now, and it’s only now that I’m coming to terms with understanding my place within the medically ill community. There’s so many things about my diagnosis that people don’t understand, and that I myself am still finding out as well. So much that I never really thought about myself as chronically ill.

I honestly spent so much time researching trying to figure out what the hell I had before I was diagnosed, and all I could find was dysphagia (or Cystic Fibrosis as mentioned in my other post) which is a blanket term for swallowing issues that I really couldn’t think of myself as having EoE or even what the community who had it was like. Mine is very mild now that it’s controlled on a heart burn medication but I never really researched outside of my own bubble. Which knowing me is slightly strange because I like to know everything. I like to know all of my disease what it entails and how it affects me and what I should be on the look out for. So why on earth am I just discovering now that children who have EoE often end up on feeding tubes? It’s just strange to me and I can’t wrap my head around why I didn’t do so much research. The only thing that comes to my mind is that I didn’t want to be chronically ill.

That’s a very frankly insulting idea to have but an issue I suppose is that I didn’t even realize those were my thoughts. I wasn’t scared about being a label, I was just trying to survive the next 24 hours with food in my stomach. Because my symptoms were so certain to me, it made me neglect I guess looking at other people with it.

EoE is as I’ve mentioned before a rare disease, the first journals about it appeared as recently as 2006 and frankly there’s just way too much we don’t know. There’s also so many other diseases that factor into it, like I just discovered that there’s Chronic Eosinophilic Pneumonia or Carryington’s Disease. Pneumonia! Which is one of the things that I am a chronic sufferer of. Maybe my doctor didn’t know about that specific type or maybe she wanted to wait and see about that if the medication didn’t work. But there’s that word again, chronic.

Now will I ever make a post not referencing Ellen Pompeo? Honestly hopefully not, I love her far too much. But here’s where chronic illness plays into that. Don’t lie and say you haven’t scrolled through who a celebrity follows on Instagram, we all stalk. Fans discovered that Ellen followed a chronic illness lifestyle page, where a woman posts quotes and photos and the captions are always related to empowering those with chronic illness, or anyone who can use support of any kind, she’s very welcoming to helping others and even does posts where she lets you just rant and let your anger out. You all can discover Brown Eyes Thick Thighs for yourself and see what she’s all about. But for the longest time I somehow didn’t realize that I could relate to her posts about her illness and even though I have different diseases, that I could be chronically ill too.

I’ve come in contact with several people who are Spoonies, which refers to spoon theory which has to do with invisible illness and chronic illness. A spoon is a measurement for how much they can handle within a day. I struggle to find myself exactly fitting in as a spoonie because on the surface my chronic illnesses are not to the same extreme level that others are. I’m rather high functioning person, although my say need for exercise is probably the biggest change. I always walked very fast when I was younger and I would also be out of breath a lot. People sort of assumed one was due to the other but it was most likely my asthma. I can no longer go on runs or hikes without preparing myself before hand. I always have to make sure to have my inhaler on me. Food is a bit of a trickier issue because I made the choice in light of all of my issues to become vegetarian.

I had a friend who was vegetarian before and the lifestyle seemed very pressured to me and I felt myself rebelling. I never liked meat to begin with, and one of the reasons is the texture made me struggle to swallow it. I remember days of just sitting at the dinner table, struggling to swallow porkchops and it just got mushy and stuck to the back of my throat and I hated it. I stopped eating just about everything but burgers and lean meats before going completely vegetarian.

but back to spoon theory, I kind of made this post to say that I do have chronic fatigue. I started writing this post at 12am when I couldn’t sleep. I don’t fall asleep until 1-2 am most nights and I can’t sleep in past 8am. On school days that means I’m getting up at 7 to be ready in time for my 9am classes. It’s not normal. I find myself out of breath because I walk fast and I have to teach myself that I can’t do that anymore when my lungs are irritable. I can’t eat food late at night anymore because of my medication. That’s about 8 or 9pm when as a college student I’ll be frantically doing assignments until 9pm and forget to make dinner.

I’m constantly tired all the time and I know when I dissociate or tune out of situations because I’m too tired to function. I can’t make it through two back to back classes from 9am to 3:20pm. I mean I do it but I come home and I can’t do any homework we were assigned because I’m too busy trying, unsuccessfully, to nap or making myself food.

So let’s get on the topic of food.

Throughout my life I grew up very slim, and never hit higher than 102lbs. For most of highschool I was from 96-98lb range and I hated it. I hate it so much. I don’t feel comfortable wearing crop tops where you see my ribcage, or bikinis were you can see it either. It’s only recently that I’ve come to terms with all of that. The comments, the questions “are you sure you’re full” as if no one understands that a tiny human has a tiny stomach. The accusing looks that ask if you’re anorexic, and the repeated frustrated replies of no and forcing myself to eat more than I want to. All to prove a point.

So when I had to go on a liquid diet and I couldn’t swallow so much as a ramen noodle, I lost weight. I dropped from 96 to 88 fairly quickly and then over the months I ended up as low as 86. I’m currently in that range and while it is ‘normal’ for me, it’s not ‘underweight’ in terms of worrying doctors because I drink nutritional drinks etc. But it means that I’m constantly hungry. I will eat a full meal, or what makes me full and be hungry within an hour. My metabolism won’t stop. It’s why I’m tired all the time because I’m constantly trying to eat. and I am tired of it. I’m tired of having to eat so much all the time, or trying to bulk myself up. Nothing will ever do the trick. Just a few days ago I had hummus on white bread toast. I had 3 ‘toast’ sandwiches with hummus. 3 in a row. Hungry. All the time. That still didn’t do much so I ended up having shrimp gyoza from Trader Joe’s that I made in my frying pan.  That made me last until dinner time maybe.

And all of this is circumstantial on if my EOE or my seasonal allergies aren’t so bad, and if they’re acting up I’ll stick to applesauce, soups, pasta with pesto instead of tomato sauce-

I can have some acidic foods as long as I take the meds but sometimes I like to lean away from them if I’m having a bad day. This is all just depending on the day though. My other post I mentioned that there was a situation at my school that triggered a lot of stress and anxiety in terms of my living situation. Because of that I was having stomach pain and loosing weight as well. That pain and struggle has left me but it doesn’t stop me from worrying about it especially in terms of getting up early or rushing myself through getting ready.

And all of this worrying about eating and food obviously takes a toll on my mind. I’ve found it harder than ever to concentrate, even on things I love like Tv shows. I can’t focus. I’m finishing this post after having the worst sleep I’ve had maybe ever. I don’t know why this is happening. I’ve had the feeling before, where I try to sleep and I get startled because I feel like I’m falling. This time I woke up after sleeping for maybe 5-6 hours and I felt startled but not from falling. I fell asleep for about an hour and I didn’t wake up feeling refreshed at all. I haven’t had a decent sleep in what seems like forever at this point. and I want it.

Throughout all of this it’s just all so frustrating. Like I mentioned I’m a high functioning person and what that means to me is that I’m very put forward in what I do. Being lazy never used to be a part of me, and I don’t consider myself lazy when I have to consider my illnesses and ‘relax’. Relaxing for me is very important because I can’t just have a lazy day in bed exactly. I have to make so many snacks and do all of these things to prepare. Most times I don’t even get around to watching the Tv I want to because I just space out or I try to sleep. I spent my days in highschool doing everything and above what I needed to do, I was an overachiever and it is hard to not see myself as that anymore. My work is still to the best of my ability but I find myself wanting to be sloppy because I can’t handle it. But that’s in terms of things like writing assignments compared to things like media related projects. I used to be this force of nature but now I find myself struggling.

Another example of me being fatigued is social outings. We went to a museum as a class the other day, we walked there. Which is fine its like ten minutes from our building, but it was rainy with 30mph winds. 30 mph winds plus an asthmatic? Not good. I made it there, and I never felt like I couldn’t breathe its more like my body has to do extra to make up for the stress of breathing in the wind. I had a lovely time, and I walked home and I immediately took a three hour nap. That’s not normal. I grew up never being able to nap. Naps were not a thing until I got to college. Even when I pushed myself the hardest I could in highschool I very rarely came home and napped. There’s this culture online where everyone claims they go home and nap but honestly, really? It’s just not a thing I was used to. I get exhausted so frequently from minor things. Going on a small day trip down the street shouldn’t make me feel like I just ran a marathon.

My EOE comes with seasonal allergies as well so I constantly have stuffy sinuses, post nasal drip and other allergy symptoms that only have relief every few days. I take medication for them but it is only helpful to such a certain extent. As spring comes so do these headcolds, feelings of being foggy and forgetful, and waking up to suddenly not being able to breathe until taking nasal sprays.

And now it’s been a year since this all started and I just want to raise my voice about my story because I feel like I taught myself that what I felt wasn’t a part of it, or that I wasn’t valid enough to be considered something that just lets people know I’m a sensitive person in all terms of existence. I want my rare disease to be heard, I want my feelings to be seen. I think that a lot of EOE isn’t diagnosed until it’s too severe, or it’s not understood as well. It needs awareness and real support for research. I may never be able have a full cure for every one of my ailments but I like to know I’m not alone. And right now for EOE, I feel incredibly alone. Especially because I’m not like the severe cases on feeding tubes and elimination diets. Being vegetarian isn’t that hard compared to what some of these ten year olds must do to eat.

So maybe I am chronically ill, and that’s ok.

“Your story is not more difficult than mine, my story is not more difficult than yours and I think if we all keep can open mind and compassion for each other-life is hard, no matter the circumstances, whether they be blue or red or green or yellow. We all have a story.”- Ellen Pompeo

Here are some sites for more information on EOE

http://apfed.org/about-ead/egids/eoe/

https://rarediseases.org/rare-diseases/eosinophilic-esophagitis/

http://www.childrenshospital.org/conditions-and-treatments/conditions/eosinophilic-esophagitis-ee

http://curedfoundation.4mobilesites.com/

http://www.ausee.org/

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An Elephant never forgets

I’ll never forget the first cough. The way my body rattled as I coughed. It was too much for a nine year old’s body to handle.

I grew up with fairly average allergies. I’m from the City of Trees. So pollen season is nobodies friend. We’re all sharing the Kleenex from January to May. My skin is a little more sensitive than most and I’m allergic to grass which just meant I got a rash when we played out in it. Allergies never seemed like a big deal and when they bothered me I just took over the counter medication. But then I was nine.

I was in third grade and that’s when I got it. The coughing that made me physically hurt. My back was in agony, and I was coughing up mucus roughly the size of my thumb. It was terrible. I went on all these different medications until I finally had to go to the doctors. I got an x-ray of my chest. I had an x-ray before then when I was either seven or eight, I was in second grade when I broke my arm for the first time. So I have pneumonia.  But what I didn’t know at the time was I also had asthma. I wasn’t diagnosed with asthma until I was older but when I got all my medication for the pneumonia I was given an inhaler alongside everything. I got medication. Augmentin to be precise.

Right augmentin ruined everything. I was taking time off of school and once I was on medication I could finally return right? I broke out in hives at school and immediately went back to the doctors for another prescription. While I was coughing so hard I was afraid I would pull a muscle mind you. I eventually took amoxicillin and the infection cleared up after weeks. Just because it clears up once doesn’t mean that’s the end.

I go through the rest of elementary school fairly healthy. I sometimes had trouble breathing when I ran during PE but it was such a short section of the school day I didn’t really think about it too much. I was still able to run so that was enough for me. It wasn’t enough by the time I was 12 and starting 7th grade. PE became hell. Throughout my middle school career my fastest mile time was 9:34, which was fairly decent but I would have to stop and start and walk and I would feel like complete garbage after I ran. I would be coughing and my throat would feel like it was on fire, it was like the wind was knocked out of me every day for 12 minutes of class. I was fed up. I was diagnosed with allergy and exercise induced asthma by the end of 7th grade. My inhaler made things a lot better but I will always have breathing problems when I run, no question about it.

And in 8th grade I got pneumonia again.

The aching the wheezing and the mucus returned. I don’t remember too much about that time but what I do know is week after I got over it…I broke my wrist and thumb again. Needless to say I was frustrated. My body was falling apart and I was only 13. It’s no fun constantly filling yourself full of steroids and caffeine thinking you’re having an asthma attack when you actually have a pneumonia. You get jittery after using your inhaler, especially when I had just recently got my inhaler and was very sensitive to it at first. I remember one instance where I used it the night of the Olympic Opening Ceremony, the London summer games. I was up all night after the ceremony because I was so jittery I couldn’t relax. After a few years I got used to it finally.

So I go through highschool and something happens the winter break of my senior year. I had sort of weaned myself off allergy medications. It still seemed too early to be taking them I mean who’s allergic to things in winter?

I am of course.

It’s winter break and I’m trying to eat and suddenly things aren’t right. There’s this feeling in the back of my throat. It’s almost like food kept catching there and I wasn’t swallowing right. I gave it a week or so and I started to try and see if it was one food doing this to me. I knew meat was a big irritant and I made the switch to just broths and soft foods and soups for two or three weeks. By the time I returned to school I had lost a lot of weight, and I was already slim to begin with and I was having trouble concentrating. We finally got in to see a GI doctor and that’s when I went through test after test to figure out what was going on. I had over six vials of blood drawn I remember, and I got x-rays done of my trachea to make sure my anatomy was right. It didn’t show me anything except I had a small trachea which I already knew because I had trouble swallowing pills up to then. That explained it. And the choking feeling which I believe I have always had but that year it finally got irritated enough for me to really be bothered by it. Then my doctor decided on an endoscopy.

Endoscopy is just a camera down your throat to look at your throat and upper stomach. I was 17 at the time so I was admitted to the peds wing for surgery. Which I actually loved. I remember that my surgery was delayed. I didn’t have a separate room, I was there for out patient surgery, or same day surgery. Which means that I was in the same room as all the ER patients who needed surgery, for peds. Something peds does to make the kids feel more at home for the short, scary, amount of time they’re waiting is give them a custom pillowcase. I sort of knew this one endoscopy wouldn’t be the end of my hospital visits, ever, and I took the pillowcase I got directly to my heart.

Who doesn’t love elephants?

I always liked them for sure. I liked a lot of animals when I was younger, giraffes for sure, and flamingos. I remember I had stuffed animals of each. So elephants wasn’t out of the blue for me to enjoy and I had always cared about conservation as well. This pillowcase however was given to me. I didn’t have a choice. It was there and they said at the end of your procedure you got to keep it. That gives you hope I think. Obviously I wasn’t there for a life threatening procedure. I had already binge watched 11 seasons of Grey’s Anatomy by then and sure I had horror stories running through my mind. My hospital is a teaching hospital which is one of the things I love about it. I want to help others education even if it means some of my care is well… messy. They’re learning still. But still I held onto hope. If I survive this, I can survive whatever the hell my body was throwing at me.

My procedure went fine. I like being under anesthesia. It’s the best sleep i’ve ever had. I was carted into the OR, I could hear some resident talking about a position they turned down and then I was out. Waking up was fine. I wasn’t over the top or saying weird things. I was just groggy and I couldn’t walk. I was also starving. That’s all.

The endoscopy showed that I had EOE.

EOE is Eosinophilic esophagitis. You can read more about it here, but the basics is that it’s white blood cells that collect in the throat due to respiratory allergies. It presents as heart burn but it was undetectable for me. I have to take heart burn medication for it. But that wasn’t a cure all for me. I started taking it and three weeks after my endoscopy I started coughing. It was a nasty cough and so much time had passed that we were in denial. It is common to get pneumonia after an endoscopy but it would have presented sooner is what we believed. It was all the warning signs of pneumonia. I go back to the doctors and my resident is busy so as a teaching hospital they assigned another doctor for a consult. We were waiting for five hours for the doctors and then they misdiagnosed me. Okay maybe misdiagnosed is a strong word but they were wrong. I was told to take over the counter medication and get a humidifier. Within the week I was coughing up blood and I went to the ER because I had trouble breathing.

I got an X-ray and our fears were right.By the way the peds ER is amazing. The nurses are so nice and they had music playing from their stations, and there was one point where one nurse came around and he blew bubbles at everyone. It was fun. I of course was just hooked up to a nebulizer until my lungs opened. That’s when it got scary. The doctors came over to me and we began talking about how many cases of pneumonia were on my chart. It was a lot for someone who’s generally healthy. There was a brief period where we did testing for cystic fibrosis. I would hold my elephant pillow tight and I would worry. I knew that the next step if I was diagnosed would generally be a lung transplant. I am thankful every day that I do not have cystic fibrosis and I look up to those who do have it. I know half of your struggle. I know parts of your chronic pain. We are not too different. I am a lucky one. I don’t loose hope for others to be lucky though.

I eventually did allergy testing and went through appointments until I was prescribed other medication to keep the allergies in check alongside the medication for the EOE. Things settled out. My pneumonia went away. I’m always paranoid it will return and I don’t think the fear will ever leave. I don’t know why my body does this. I get a pain in my back and I start coughing and the fear starts. It’s frustrating. But nothing is more frustrating than my recent illnesses.

So in June of last year I had a check up endoscopy to see if the medication was working. Only a few allergies cells showed up on the biopsy. I’m not cured but I have hope again. I went to college for the first time this year and I had several events that caused anxiety. Through out my first semester I started having stomach pain. I believe now that it may be anxiety induced but it was so bad I would stay home from classes. I also finally made the decision to go vegetarian because of it. I knew meat irritated me because of the EOE, and I could even be allergic to certain antibiotics in the meat and all these possibilities. I just gave it up because even if maybe I just had a bad sandwich once, it wasn’t worth it for me to keep supporting the industry as whole. It was a conscious choice I will never regret. The illness eventually kind of went away but I had to have another procedure for that. I got my second pillowcase from that trip. That pillow case has wonderwoman on it and I love it. I love it a lot.

The main influence on me throughout all of this was being patient with myself and with time. Test results are some of the scariest moments of your life and when I taught myself to have faith and to trust my doctors and to stop myself from worrying endlessly over them the more I was able to hold onto hope. I didn’t have life threatening diseases or surgeries here but they a take a toll on my life. When I got my elephant pillow I felt like I was being told to hang on. Since then I’ve researched elephants, I’ve donated various ways to multiple charities and signed petitions to end elephant poaching because that pillow made me value myself so why shouldn’t I value them. It was this weird twist of fate that I received that pillow case and I will never know who made it. But it was during that time of the year when Ellen Pompeo started to get involved herself with a lot of conservation of elephants and really opened my eyes to what needed to be done. I felt like fighting for elephants gave me this voice that was so personal because in some way through that pillow case they fought for me.

Elephants are strong but they’re also patient and some of the most intelligent animals. The phrase an elephant never forgets is rooted in the elephant’s expansive mind and ability to recall events and things. I will never forget the path that led me here and I will never forget the herd I found alongside me and that pushed me through. I suffer and I struggle but I also have patience.

I will never forget.