#I had gone all the way to mayo clinic in february to get diagnosed

[cookinguptales]

I know this is from a glorified salt advertisement, but you know what, I did need this today.

[chronicallymargaret]

the beginning

One morning in February of 2012, my mom had knocked on the door to wake me for breakfast and I told her I didn’t feel well. She went and grabbed the thermometer and it read 102℉. There was a sickness going around the high school at the time, so she told me to take some meds and rest. The next morning, my mom woke me up again to check my temperature and it had barely gone down. I stayed home again and followed the same regime. After my fever finally broke, my body didn’t feel right. I thought maybe I was just overly tired from being sick or maybe it was just the cold medicine wearing off. Eventually, I got to the point where I really didn’t think about the pain because I didn’t want to worry anyone. The family wounds were still healing from losing my first best friend, my grandpa, six years prior to cancer. Plus, I never liked people worrying about me because I knew that no matter what, I would always be okay - or so I thought.

High school was hard enough - let alone having a medical condition that not a single doctor in the tri-state area knew a single thing about. I kept my symptoms away from my parents for a very long time. Eventually, like most parents, they caught on that something wasn’t right with their kid. In December of 2012 along came the typical parental questions: “Margaret, are you doing drugs?” “Come on, kid, just tell me what’s going on with ya.” “Kiley Mae. Sit your ass down and start talking.” And then the never ending conversations and tears started to flow. I explained that, no - I was not doing drugs (I really was quite innocent here, Ma and Pops. Only a couple of times, I swear.). I finally broke down to my parents and told them the truth: Ever since that February morning in 2012, I’ve had a headache and chronic pain nearly every day.

Next thing I knew, my mom started researching and researching and more researching. She tried countless times to get clinics/doctors/specialists - you name it, she called them - to even listen to her. She called Mayo Clinic nearly EVERY DAY - practically begging on her hands and knees to fit me in to be seen by someone, anyone. She was my voice because no doctor or person took me seriously. I was “craving attention, a drama queen, drug addict/seeker, hypochondriac, lazy, not good enough, problematic, selfish, waste of money, time, and space.) I watched my dad’s hair slowly turn more and more gray as he worried about whether he should go to work to make money for the never-ending medical bills or go with his wife and daughter to find out the answers. (I hate how corporate America works. Since when has money become more important than one’s health? It’s disgusting and I wish we could change the system.) I watched my sister lack the attention from my parents that she deserved because they were constantly worried about me. (I am in no way, shape, or form calling out my parents. They have ALWAYS done their best in EVERY situation and that is why I am so proud to call them my parents - my heroes.) My high school friends secretively raised money to buy me a miniature pet pig to try to help make me feel better - my parents appreciated the kind gesture but said no because I needed to focus on my health. (I WILL own a pet pig one day - Dallas has already approved.

I have had a majority of my POTS symptoms under control over the last 10 years, but 2023 really screwed up my body. Due to all of the trauma and stress from not only everyday life, but miscarriages, surgeries, and mental health episodes as well - my body has been in FULL overdrive. I've been struggling trying to keep my life going and trying to ignore my health because I don’t want to give in to the fact that my POTS is getting WORSE and not better like I had been telling myself - and everyone I know - since the day I was diagnosed in July of 2012. Back then - yes, this was a frickin’ decade ago .. totally gross, I know. [“POTS was only seen in approximately 500,000 Americans. (https://www.aafp.org/pubs/afp/issues/2012/0901/p392.html)."] Imagine being 15 years old and you're a literal drop in the ocean of people who have something medically rare. What in the frick are the odds of that?

Flash forward to now, February 2024, I have nearly every symptom back plus new ones. My chronic symptoms are headaches - different intensities and locations, lightheadedness and dizziness, severe brain fog - I try not to drive on these days as I typically forget everything, insomnia, anxiety (omg .. I said the BIG “A” word), and depression (oooopps, I did it again bahaha). My new symptoms are: chronic abdominal pain - intensity and location has varied over approximately three months now, dry heaving, hot and cold intolerance (I told my work mom’s I feel like I’m going through menopause with how many hot flashes I have .. they giggled and said “Ohhh Kiley Mae, you have no idea what you’re in for - this is hardly nothing.” Also, can we talk about how important work relationships are? I love my work moms and work family - I’m very blessed on that front.), and vomiting.

The news that I learned today was that due to the dry heaving and vomiting, I now have a large hiatal hernia - part of my stomach is on top of my diaphragm. I’m currently waiting for a call to schedule a barium swallow test and I have a referral in with the University of Nebraska Medicine with a POTS specialist. I personally believe that I’m going to have chronic headaches and abdominal migraines - but I’m holding onto a little bit of hope that the doctor I currently have is going to confirm that the abdominal discomfort is from the hernia, not POTS. I plan on keeping this updated regularly because after I figure out what’s going on with me - I want to share my path of life so no one has to go through the medical trauma that I have.

Medical trauma is a huge part of not only who I am as a person but talking about it is the therapy that I am working through right now. I will eventually spill all of the emotions, but for today I’m going to talk about today. Because today was a very good day and I deserve to celebrate it.

My parents have become “snowbirds” and fly to southern Texas for the winter. Unfortunately, my endoscope ended up being scheduled while they were gone. I told my parents they didn’t have to come back home because it was a simple procedure, and everything was going to be okay. (Yes, I’m 27 and still take my parents to certain medical appointments because I’ve been hurt - I’m working on it.). I don’t know if it’s because I finally did it by myself or if the staff was told to be extra careful with me or what - but I had the most relaxing experience ever. No one looked at me like I was weird when I stated that I had POTS and would need an extra bag of saline. The first anesthetist actually shared with me that she also was diagnosed with POTS. I immediately got a smile on my face and asked if she was kidding. Coming from a small town, not very many people understood what my diagnosis is and again - I’ve been used to being a single drop in the ocean.

The anesthetist made sure to mark my charts and inform the rest of the care team my condition, what to expect, and what I would need after I woke back up. Anesthesia tends to send me into a flare up - especially with cutting off food and water after midnight. Once I got taken into the operating room, my actual anesthetist started asking me questions about POTS. He stated that he had heard of it, but only until recently. I started to explain how long I’ve had it. Then I just started word vomiting because this was a whole new experience for me - how I just want some answers but I’m sure they wouldn’t find anything. I had already come to terms with the abdominal migraines starting. He looked at me in the sincerest way and said, “Wow. You’re a strong woman. You’ve been through a lot but you’re so cool about it.” That statement right there hit me. I realized in that moment that, holy shit, I’ve persevered. I’ve climbed a huge hurdle today and I can’t wait to keep climbing.

If you've read this long - just know that I see you and I love you.