“I used to be active. I loved hiking, camping, biking, and being with friends. I miss that me. In 2017, I began to feel what I have always described as a ‘heavy heart.’ I was consistently trying to find ways I could work without a bra on because I could not stand the pressure on my chest. I couldn’t tell if my heart rate was beating too slow or if it was maybe beating too fast, but what I did know was it felt like it was full of fluid, even though I knew it wasn’t.
Shortly after this started, I had my wisdom teeth removed at the end of that year and unfortunately, I never fully recuperated. My body ached, my veins felt heavy, my brain was not functioning, and my heart felt even more off. Even though I did not have a runny nose or a cough, I blamed my symptoms on a possible cold. It was not until April of 2018 when I finally made an appointment with my primary doctor. I was not sure what to tell my doctor without sounding too whiny… I was afraid she would put me in the nuthouse if I told her everything. My chief complaint was my heart feeling offbeat and heavy, along with tingling fingers, constant headaches, and nausea, as well as sweaty palms and feet, but the biggest red flag ended up being I had lost 20 pounds in a matter of months.
I did not tell my doctor I was planning a wedding because I knew she would call it anxiety and totally blow me off. I knew this was way beyond anxiety, especially since my heart troubles started prior to being engaged. My doctor surprisingly seemed concerned and ordered a blood screening, while also putting a heart monitor on me for 24 hours. However, even though my results showed a few red flags, my doctor did not know what any of it meant, so she sent to me specialists which unfortunately has not gone well for me.
Maybe I am rare or maybe I have not found the right doctor, but only time will tell. One doctor thinks Lyme, one Lupus, someone else suggested chronic fatigue syndrome, MS, and recently a mass in my pituitary was found but dismissed for whatever reason. The medical field has left me baffled. The only definite diagnosis is POTS, which is a trip in itself to have. When I imagined planning my wedding, I never thought I would be making a backup plan in case I was not functional that day. Getting married with a chronic illness added some difficulties, but it taught me a lot about life as well. I kept everything super simple, had the reception on a yacht to stay away from the dancing feel, and had a backup plan! Luckily, that day I felt the best I had in a lllooonnggg time! Seriously amazing! This was definitely a time in my life when I was reminded it isn’t the little things that matter, but just the big picture; our love.
These last years have not been easy. I try hard to stay positive, no matter what that day presents me with. I always remind myself of what I am grateful for. I used to work, but my job let me go a few days before Christmas, which was huge, but also a relief. They could not handle my illness and bullied me for months. I am at a point where I feel too sick to work, but I’m a few months from having a master’s degree as well, so what a mixture of emotions that creates. For now, I am grateful I am able to stay home and focus on ME!
I have been learning how to advocate for myself, I have my very supportive husband to thank for that. I have never been strong at sticking up for myself, but after too many times where I have felt like nothing but a number in the medical system, I have learned to never allow anyone to minimize my symptoms. I know my body best, and although I may not look sick from the outside, I know what hurts and does not feel right. Living with a chronic illness takes courage, perseverance, and acceptance. I go to each doctor with a notebook filled with results from tests and lab work… I also have a full page with my symptoms. How many 32-year olds have a full page of symptoms? Oh, the joys of the non-average life.
I have seen a rheumatologist, two cardiologists, electrophysiologist, endocrinologist, pulmonologist, two neurologists, adn an otolaryngologist. I will be seeing a gastroenterologist this month, a new rheumatologist, and neurologist soon. I have done a pheochromocytoma nuclear exam, more MRI’s than I can count, a tilt table test, two stress tests, three heart monitors, a heart ultrasound, abdomen ultrasound, pulmonary function test, and soon a pulmonary stress test, and pituitary mass update MRI! Soooo what has been found with all of this?! Not much, in my opinion. Three brain cysts, one small pituitary mass, three liver lesions, three ovarian cysts, POTS diagnosis, mitral valve regurgitation. I faint, have a right-sided weakness, a positive 41 igg band with the western blot, high DRVVT, protein in the urine, ketones in urine, along with low C4C.
I never know what to think of it all. I just have to keep moving forward. Some days it all gets to me and it is hard. I feel like the whole medical system, which we are told to trust, has done nothing but dismiss me and give up. I cannot get over the heartache I feel from having the medical field give up on me. But honestly, we are our biggest advocates for ourselves, so I will not let this stop me! Someone, one day, will put everything together and know what is wrong. What I battle internally is still a mystery I hope one day will be figured out. For now, I must follow my faith and take each step I get to make it through to the next day.
With all that being said, my message it everyone is… You never know the story of the person you walk past and what they go through. Having a chronic invisible illness has helped shape my mindset in ways I will always be grateful for. I am chronically ill yet chronically strong.”
This story was submitted to Love What Matters by Melissa from Sarasota. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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