I've talked a lot about places on my blog and I figured it is time we dive a little deeper, get a little more personal, and a hell of a lot more vulnerable.
Anyone relatively close in my life knows that I have battled a ton of different ailments my entire life. I've been told I'm a hypochondriac, or that it's all in my head, or that I am just making a bigger deal out of things than necessary and I am here to tell you that if something is wrong, seek help until you find someone that will listen to you.
Ever since I was a little girl I have always gotten sick frequently. When I was in elementary school I was having muscle spasms so powerful that it caused me to feel like my appendix was bursting over and over again. I got a cat scan to figure out what was wrong and in the process we discovered that I have poly-cystic kidney disease. Poly-cystic kidney disease is an inherited disease where cysts grow on the kidneys causing them to lose function over time. Most people need a kidney transplant around the time they reach the age of 60. My family knew it was a possibility that I would inherit the disease since my grandma, aunt, and mother all have the disease as well as countless other relatives in my family. I have witnessed how powerful an organ donation can be, how much it can help someone's life, and I have been an advocate for mandatory organ donation since I was in elementary school when my grandma had her transplant. I am a long way off from having a transplant, but it does affect the way I live my everyday life. When taking medications I have to make sure that I am taking ones that aren't processed through my kidneys since that causes them to work unnecessarily hard. When I'm sick I need to make sure I am taking care of myself since a kidney infection could be deadly for me. Staying hydrated is another key component for maintaining my health. For more information on poly-cystic kidney disease the Mayo clinic has a comprehensive article about it: https://www.mayoclinic.org/diseases-conditions/polycystic-kidney-disease/symptoms-causes/syc-20352820
Aside from poly-cystic kidney disease I have a variety of other conditions that affect my everyday life. The one that is the most frustrating and that honestly affects me the most, is eosinophilic esophagitis abbreviated as EOE for short. EOE is the build up of eosinophils (white blood cells) in the esophagus as a reaction to foods, allergens, or acid reflux and causes inflammation and irritation which leads to difficulty swallowing. When I was in elementary school I was violently sick for a really long time and we could not figure out what was wrong with me. I remember one summer where I spent most of my time inside reading books because food would move right through me and it didn't matter what I would do. For a while if I ate anything with dyes in it I would vomit. I eventually cut gluten out to see if that would eliminate my issues and it only sort of solved the problem. I finally went to see a specialist and they insisted that I needed an endoscopy. The results of the endoscopy showed that I was lactose intolerant which is something I have always known, and that I had EOE. That was almost 10 years ago and EOE has been researched for only the past couple decades. It was a shock to me when I became violently ill again almost 2 years ago that EOE is a chronic condition. When I was first diagnosed I was given steroids to help with the inflammation and was told to avoid foods that hurt my stomach and they sent me on my way. As time has gone on and research has been conducted it has been found that EOE is chronic and never goes away. When I was around 19/20 years old I was incredibly sick for months and months on end. I was throwing up basically everything I ate, things would get stuck in my throat causing me to panic, I lost a ton of weight, I couldn't gain weight, I was absolutely miserable. I finally just completely cut all dairy from my diet and I began to feel a lot better. But I was still having problems swallowing. So I went back to the doctor and briefly mentioned my diagnosis as a kid and they brought it to my attention that EOE is chronic. Since then I have been able to get a handle on the condition and have eliminated foods in my diet that irritate my esophagus, I went to an allergist and have started to make changes there, and I am truly dedicated to my health. This condition affects me the most because if I don’t watch what I eat I will get sick. EOE is characteristically known for delayed reactions, so anything I put into my body I won’t know if I will have a reaction until a few days later making the process of finding out what causes irritation incredibly difficult. When I’m out with friends I have to be incredibly strict with myself to ensure that I won’t get sick. I can’t eat most things that normal 20 somethings eat since it can have such terrible consequences. For a long time I just ignored the restrictions and ate whatever I wanted which made me miserable and constantly sick. I adhere to a completely dairy free diet now and try to eliminate other irritants and allergens from my life too. Animal dandruff bothers me a lot but I’m not willing to give up my dogs so I take a lot of allergy pills. For more information about EOE visit the Mayo Clinic web page about it: https://www.mayoclinic.org/diseases-conditions/eosinophilic-esophagitis/symptoms-causes/syc-20372197 So what the hell is my point in talking about all of this? Well I have a few. One of the first things is that just because someone looks~ healthy does not mean they are healthy in any way. I have always been conventionally "skinny" and "healthy" looking to anyone on the outside of my life but for me I know that I am not at a healthy place always. My body takes a lot of internal abuse from itself leaving my immune system weak as all hell. My main point about all of this though is that people like me with pre-existing conditions deserve the access to the care they need. I am fortunate enough to still be on my parent's health insurance since I am under the age of 26 but in less than 5 years I will need to get health insurance of my own and I fear that having pre-existing conditions will make that nearly impossible for me to get the care I need. Please consider this when you are talking about health care in this country. Luckily my conditions are not life threatening. But for many people with life threatening conditions their lives are not constantly assured a place in this world.
I will be writing another post later about mental health and how that has been affecting my life but I wanted to start with this!
Next week I'll be talking about food allergies that I have/have had/what food allergies are etc. in relation to EOE.
I truly appreciate everyone taking the time to read about things that are so close to my heart.