What’s important is that we never stop believing we can have a new beginning

“It’s a lot easier to say when something ended rather than when it began. Most of us can recognize the end from a mile away, but the beginning always slips up on us, lulling us into thinking what we’re living through is yet another moment, in yet another day.” ― Steve YarbroughSafe from the Neighbors

Beginnings are a funny thing. If one were to ask me when I first knew I wanted to become a social worker or the first moment I knew I was in love, I don’t believe I would have one, single defining moment. I’d most likely answer with a description that consisted of several memories that accumulated over time to create an idea of the beginning. For my illness, it wasn’t like that. It was a distinct moment that could not be erased or confused with a series of events.

I’d like to say it was an ordinary day when everything changed, but it was already a special one. I was attending the first of many family parties for my boyfriend. I clearly remember being concerned about wearing the proper attire, remembering names, and making strong first impressions. After a night’s worth of making connections to people who will hopefully become my own extended family, I requested that we make a pit stop at Cold Stone. My boyfriend looked at me confused, as there was already a large amount of food consumed at the party, but he didn’t hesitate. I can count on my fingers the amount of times I have frequented Cold Stone, yet I got the same thing every time: Coffee Lovers Only. This was just a small example of how much I valued consistency and predictability. His sister and I sat there consuming our children’s sized ice cream, while he politely watched and waited for the night to come to a close.

As soon as we reached his house, I immediately knew something was off. I remember not having enough time to take my jacket off to make it to the bathroom. I remember feeling like I had millions of mosquito bites through my layers of clothing all the way down to my jeans. I remember thinking this was hypocrisy, but looking anyway and observing that I was covered in hives. I remember feeling like I had food poisoning, but telling myself that I have a sensitive stomach that is always “acting up.” I remember getting it together enough to go back to my boyfriend’s room to tell him I needed to go home because I didn’t feel well. Then I remember complete panic. It was this indescribable feeling of wanting to flee. Flee from my body, flee from the house, run for the hills. And not just an emotional feeling, but a physical one. I felt paralyzed, trapped. Before I knew it, I was taking several Benadryl, having others cover me in itching cream on each and every hive found, and driving back to my apartment in the passenger’s seat with his entire family following in tow. I knew something was terribly wrong, but I had no idea what it was or how to communicate it in a way that wouldn’t cause panic in others. When you grow up, you feel like you’re supposed to be able to handle being sick. You only go to the ER when it’s an emergency. You tough it out until you can’t tough it out any longer. You challenge your irrational thoughts and feelings by telling yourself that it will get better with time. Unfortunately, it only progressively got worse. That emergency came when I felt like I couldn’t breathe. I remember calling my parents to ask if it was okay that I went to the emergency room, as if I needed validation that my symptoms were real enough to warrant such a dramatic step. As always, up until this point, I did a good job at convincing myself I could “handle it.”

A visit at the ER concluded that I had a nut allergy, as that was the only thing in my ice cream that the doctor believed would have caused such symptoms. I remember feeling confused, curious,  and hesitant about how the doctor didn’t even hear me out. This couldn’t be possible when I routinely ate nuts my entire life. I was in such denial that I didn’t even fill my epi-pen prescription for weeks because it couldn’t possibly be true, not me, as an adult. Adults don’t get food allergies. Only kids have these problems. After several blood tests, skin tests, and allergy appointments, it was determined that this hypothetical guess was in fact reality.  So began my journey of learning how to change everything I knew and came to learn about eating in the last 25 years. A task that felt more than monumental.

For the next couple of months I had several episodes of what we believe was anaphylaxis. These were all in situations that occurred based on not having enough education or awareness on things like cross contamination and shared food lines (because what “normal” people even think or know about these things?). Each time, I swore my body was going to shut down and give up on me. Each time, I panicked at whether this was a reaction when I didn’t eat pure nuts. Each time, I didn’t know how to communicate to others around me what was happening in my body because I couldn’t even understand it.

The thing was, each time the doctor or I would come up with a reason for the reaction, until one day, there wasn’t any cause that made any sense. And then there was another day with another episode with no cause, and another, and another. Before I knew it, I became terrified of food. Things that were supposed to be 100% safe had made my throat close, made my tongue swell, gave me hives, made me deathly sick to my stomach, gave me chest pains that felt like a heart attack, caused my extremities to go numb and limp, sent me into wheezing fits where I was choking on my own saliva, caused me to lose all feeling in my throat, left me voiceless and hoarse for hours, gave me rashes that came in a monthly cycle, created blocks of scarlet red color all over my chest and trunk, and consistently sent me to the hospital being unsure of when something was going to escalate. It was impossible to ever determine when I was in danger or when I was safe.

This beginning was more like the normal type of beginnings where there was no exact moment when everything suddenly changed. I’m unsure of when I came to understand that whatever this sickness was, was going to be that of a chronic illness. I’m unsure of when the doctors and I were convinced it was a nut allergy and when we became confused as hell as to whether this was the only diagnosis, the wrong diagnosis, or an additional diagnosis. Somewhere between January 2015 and today, I began this journey. I have frequented so many types of specialists, been told I have a disease, to only been told “sorry, you don’t have that disease”, been told numerous times that the test was “normal” so let’s now test for something else that is extremely rare, but hey, you could have it. I have been handed over from one doctor to the next, until all doctors said their hands were tied and I needed to go to Penn Medicine because they were out of ideas and could no longer treat me.

When you have a chronic illness, it doesn’t often feel like there are many more beginnings in one’s future. Instead, it often feels like the world continues to move at its own pace, leaving you behind. This invisible illness has led me to feel defeated, isolated, confused, chaotic, and stuck more times than I’d like to acknowledge. For something that feels so out of control physically, I have decided to try to take back control in the only way I know possible: writing. It’s my hope that this can be the start of a new beginning. A beginning of connecting with others who have similar experiences, a beginning of slowly processing my own feelings and experiences, a beginning to educate society at large who has minimal insight into what a chronic illness is like, and a beginning of letting people in to the daily struggles and triumphs in order to hopefully provide comfort and ability to connect back to me in a time where it’s so easy to feel disconnected in the process.

One could even hope that one day I’ll be able to look back and say, “This was the special type of beginning, the one where it was clear and evident that change was about to happen.”

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6 thoughts on “What’s important is that we never stop believing we can have a new beginning

  1. Are you on an oral antihistamine? I take one and an inhaler daily. I’ve also noticed anxiety can bring about physical symptoms like itchiness, hives, shortness of breath, and choking when you ate afraid it will happen. I feel for you girl. It sucks to be afraid to eat.

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    1. Thanks for the suggestion! We tried the strongest course of antihistamines possible. At one point I was on three different kinds, several times a day for several months and no change at all. Strongly don’t believe it’s anxiety related because I’ve had several episodes that awaken me in my sleep from the pain and then I’ll be covered in the hives or flushing, etc.

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  2. Hang in there girl! I was in and out of the hospital back in 2011. I was having severe stomach pain, back pain, rashes, itching, vomiting, and diarrhea. They did every test twice and still nothing! I was diagnosed with just about everything under the sun (they even mentioned possible liver cancer at one point) and they even took out my gall bladder thinking that would help. I went to specialist after specialist for almost one year, but still no answers. They suggested I have a surgery where they cut a part of my liver, but before they could do that they needed to do a biopsy. Finally, after getting that biopsy of my liver they saw that I had celiac disease and needed to eat gluten free. No blood test, cat scan, MRI, colonoscopy, endoscopy, ERCP, or specialist could figure this out. One of the many specialist put me on a medication that had gluten in it too which I took everyday for a year. My intestines were shot and I was always nervous to be far from home, but with the support of loved ones I got through it. Hang in there!!!!

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    1. What a story Angel! I can relate to that on so many levels. The exhausting feeling of doctor after doctor without answers, yet having such drastic diagnoses being thrown at you. How was it that they found out you had celiac if it wasn’t through an endoscopy or blood test?

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  3. Hi Dana. I read your posts. Thanks for sharing. I had something similar happen to me – Dec 2014 until recently. I seemed to have reactions to meds and foods suddenly after 40 years. Benedryl became my best friend. Since I had carcinoid found on an ovary in 2007 they thought maybe that was it. I had octreotide scan and all the tests – all negative. Ovary and appendix removed in Feb- no more carcinoid. In August I had bone marrow biopsy for mastocytosis – also negative. I still have no answers but feeling a little better after being treated for Lyme disease. I m curious, did your scan show anything? Have you gotten any answers? I feel like I still have carcinoid hiding out yet two small to show up clinically.

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    1. Hi Julie, thank you so much for sharing. I’m so sorry to hear about the difficulty in your journey. It unfortunately sounds so similar to others with carcinoid. My octreoscan was clear so I believe that my doctor is no longer going to go down the road of carcinoid. I also still feel as if I have carcinoid hiding out that’s too small to detect due to my symptoms that fit all too well. My largest fear is having this now, but not detecting it until years down the road. I hope that you start to find answers that bring you closer to help.

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