My Patient Story
Congressional District: AZ06
Chronic Pain, Gastrointestinal Disease, Mental Health, Migraine, Rare Disease
Issues and Challenges
Alexis has encountered: Access to Expert Providers, Copay Issues, Insurance Issues, Medical Records Access, Mental Health Access, Rare / Underserved Disease
Trying to find acceptance is almost as long a journey as trying to find a diagnosis. Whether it be waking up one day and out of nowhere you're sick or you're like me and the symptoms started to take over your body a little at a time, it's all a journey.
Before I was twenty four years old, the only allergies I had were to red ants, powdered laundry detergent and NSAIDs. I wasn’t scared every time I went to eat something. I didn’t think twice about having to go to a grocery store that had a fish or seafood counter. The only traumatic event that had happened to me was when I miscarried four years earlier. But then the migraines began and trying to find help was the biggest struggle of my life.
I remember walking out of a doctor’s appointment where the PA had told me that I just had to get used to it and there was nothing he could do to help. I sat in that parking lot, sobbing, while he walked past my car and made eye contact with me. There wasn’t any empathy in that man’s eyes and I knew that I had to start advocating for myself from here on out.
After an emergency room visit and a CT scan of my head, I was given the strongest antibiotic and soon I was able to open my eyes again. What I didn’t realize was that these migraines were the beginning of my chronic illness journey. Soon after, my stomach began bloating every single time I swallowed anything. Water made my abdomen swell so much that people began to ask me when I was due. - Please don’t ever ask someone that, unless you know for certain that they’re carrying a child. - I didn’t want to eat anymore and my mental health began declining. Memories from my eating disorder haunted me every day.
While I was dealing with that, the food allergies began. I remember eating an avocado one night then the next, I went into anaphylaxis at home while my dad was visiting. I was living in a small town and the hospital was at least twenty minutes away, even longer with the snow on the roads. My dad was ready to cut a piece of the garden hose to stick down my throat to keep my airway open and all I could think was that I was fine the night before. With enough benadryl, we were able to get a handle on everything and I just ended up sleeping the rest of the night. A few days went by and I went into anaphylaxis again, but with fish. The next two times I went into anaphylaxis, I was luckily at work at the hospital. Bananas and dairy were those triggers and I couldn’t believe it.
I drove three hours to the valley to see an allergist to have the scratch test done on my back. The nurses couldn’t believe how quickly my back blew up and opened with how bad the reactions were; it was almost immediate. Things I had been eating all my life, even days before, were now something I couldn’t eat ever again.
I was in a relationship with someone I thought was going to be my forever person after I started getting sick. Allergic reactions, hospital visits, doctors appointments, test after test, finding new ways to navigate through life, getting some answers while still being left in the dark with others, he was there. Although I want to feel like I could've done it all myself, I have some self doubt about whether that's the truth. But as these things started to become a norm in our everyday lives, the true colors of the relationship began to show. No longer being overshadowed by being sick, we realized that we don't necessarily know or even like each other as much as we thought we had. As the fights grew, so did going to these appointments alone. I can't count how many times I was in a cold waiting room alone, eyes swollen from crying but also because the woman next to me had too much perfume on and it was triggering a reaction.
When the relationship ended, I was stuck standing in an empty shell. I realized that I didn't know who I was or who's body I was in. What were my hobbies? How do I manage to make dinner without fainting? Do I even eat? Will I be able to get up to let my dog out? Can I even still read if I buy some books? It's like the world stopped right in front of me and told me that I needed to wake up. Those years of being stuck in a cycle of arguments and appointments were no longer part of my routine.
Who was I?
I started with the basics, to be honest. I had to reintroduce myself to my body. Listening to it was such a difficult thing to do when you're stubborn and finding patience with myself became my biggest struggle. Day by day, though, I learned how my body spoke to me. If I carry too many bags at once, my fingers lock into place, so I learned to make more trips from the car to my kitchen. If I wake up dizzy and nauseous, then I know that I can't push myself at work or I'll faint and scare more people than needed. If my ear starts to turn red after eating something, then I need to take enough antihistamine immediately to stop myself from going into anaphylaxis. It was all things that I don't think able bodied people needed to pay as much attention to; at least I didn't before I became sick.
As I learned my body's language, it gave me the opportunity to figure out who I was as a person again. I found myself being drawn to various types of spirituality. I took a dive into my family tree and began to teach myself new languages. When the screen of the television became migraine inducing, I picked up a book to read and realized that I hadn't done that in almost ten years.
I always thought that this journey of chronic illness was about taking control back, that it was all a power struggle. That could be because I had many family members and physicians question whether what was happening to me was actually happening or if I was just making it all up in my head. It's hard when the people closest or even the professionals begin to question you, because then you start to think "maybe they're right and if I just try hard enough then I won't be sick anymore". But that's not it at all; because that wasn't the case at all.
When I finally stopped fighting myself, I began to find myself. I'm still sick and continuing to find answers, but I'm not walking into those waiting rooms crying. There are some days where I'm walking out with tears on my face, but that's almost expected when you're chronically ill. Those days happen where everything just isn't going right and why can't I just not be sick anymore and all of that. They don't happen as often as they did before now that I've learned that this is my normal.
If you were to ask, I'd say my biggest tip on finding self acceptance with chronic illness is patience. This was the hardest thing for me to do because I am very head strong and if I can think it, I believe I can do it. This is absolutely not the case when it comes to chronic illness. Even though you’ve been alive for x amount of years, this body is now brand new and you have to ease into living with it now. Almost everything is like a brand new thing to your body and you almost have to teach yourself how to do certain things again. Walking around the grocery store takes a lot longer for me and usually with a few stops in between aisles. Going out, which is still weird because of the global pandemic, is almost impossible; one because of whatever illnesses you may catch and two because being social takes a lot more effort.
Finding your group of “safe” items is also a must. This would be safe foods that don’t trigger anything, a hobby that doesn’t put you in a situation where you are fatigued or exerting yourself in any way, an outfit that allows you to feel as comfortable as can be. Obviously every single body is different, so please take my suggestions with a grain of salt, but I’d like to give examples that could possibly help someone else out.
Ramen is my number one safe food as there’s not much that goes into making it. You can make ramen with rice noodles so it can be gluten free and if you’re up to it, you can add whatever else to it to jazz it up. Also, because it’s easy to swallow, it's a little bit easier to come back up if it happens.
Reading is probably my favorite hobby but also the easiest thing to do throughout the day. I’m able to escape into another reality and pretend everything is okay in my own world. If it’s a bad day and I can’t seem to get my eyes to focus, an audiobook is my go to.
To be completely honest, when I am absolutely sick and crying, I hate to wear clothes. It becomes sensory overload and I just tear everything off of me. When that isn’t the most appropriate thing to do depending on the situation, my favorite cardigan is what I wrap around myself to feel ‘okay’. Because I live in Arizona, though, that isn’t the smartest or safest thing. A piece of jewelry I can fidget with or the strap on my purse are alternatives when it’s too hot to put more layers on.
This one may sound a bit odd to be a “safe” item, but coffee always makes me feel better and a little more put together. I take quite a bit of antihistamine throughout the day, so caffeine is a necessity although it could also be a trigger. When I can’t stand the thought of swallowing the taste of coffee, I usually settle for matcha or a chai tea. No matter what, it’s always with coconut milk and some kind of new syrup that I’m craving. There’s just something about having your favorite drink that makes you feel like you’ve got your stuff together and be a little more productive, even if you really haven’t done a thing (and that’s okay).
In order to stop myself from grieving the life that I lost knowing that I’m sick, I’m very grateful for the body I have now that I am. I struggled secretly a lot in high school with an eating disorder so my self image was highly damaged. Since getting sick, I’ve been able to overcome that situation and accept the body I still have, no matter the weight I’m at, the stretch marks that cover my hips and what size I have to buy.
I’m also thankful that my illnesses have made me slow down and learn to not take advantage of certain things. I’ve quite literally had to slow down with almost everything in my life. Cooking, walking, figuring out who I am. That sense of impending doom when I think about how I’m twenty seven years old and not knowing what I want to be when I ‘grow up’ only pops up occasionally rather than daily now.
Remember that just because you’ve accepted everything that has happened, doesn’t mean everyday will be a good day. When those bad feelings creep around or flare ups occur, have those safe items handy and let yourself feel. Keeping everything in isn’t healthy. Not every single day will be like this and it really will make you feel better to let everything out. Holding onto the negative feelings will just ultimately bring more negativity into your life. The energy you give is the energy you get back, type of thing. Flare ups happen and that's the time to let your body and mind rest. I really enjoy that little saying “no rain, no flowers”.
Pretty things can still grow from broken people.
My Motivation and Inspiration
Seeing others' stories are my motivation and inspiration to keep going thru my journey.