The Zebra that Spoons
Sometimes in life, you are thrown curveballs. Sometimes they hit you in the face and other times you dodge them! I’m here to tell you that you are not alone and that we can fight through this.
When I was young, I was predominantly healthy. From the age of five I was misdiagnosed with multiple Psychological disorders; from being on many different medicines, to being in the hospital suffering from StevensJohnsonSyndrome! Yep, you read that right! StevensJohnsonSyndrome! At the age of 14, I was on a medication called Tegretol. I ended up in the hospital for three months with SJS. The doctors were unaware of this condition, how to treat it and what the longtime risks would be. I not only had external effects, but I also had major internal effects. When I finally recovered, I started to notice a lot of change in how my body felt on a daily basis. Not too long after recovering, I was diagnosed with Dysautonomia… and of course being a young female, I was totally confused. My biggest struggle was POTS… I dealt with it and tried my hardest to manage, but as we all know passing out on a regular basis isn’t healthy. So I finally met with an electrophysiologist and had my first catheter ablation in 2015. Following this, I was diagnosed with Atrioventricular tachycardia syndrome and inappropriate sinus tachycardia. I’ve had multiple failed ablations and in January 2020, I had an sinus node modification. Finally we have won the battle and my resting heart rate is now lower. Backtracking a little… not only did I face heart conditions following SJS, but I also face Gastroparesis and pyloric stenosis… surgery was a big help! After seeing multiple specialist and going through a long journey of genetics… I have been diagnosed with Vascular EDS, mixed connective tissue disorder, MCAS, and much much more! Needless to say, these are my long term risks from SJS. On a daily basis, I infuse 2L of saline through my PORTACATH that I had placed in 2019. Not only does it help with my POTS but it helps with many of my conditions! Of course, as it may seem, dealing with such a wide range of ChronicIllness and RareDisease, it is almost impossible for me to work and stay active. I worked until the age of 22 and finally told myself that I just couldn’t do it anymore. I applied for disability and received benefits in 5 months! (Yes that’s super unheard of.) Being disabled are the age of 24 has brought a lot of confusion from family, friends and strangers. I get told often that I’m just “lazy”. I understand how that can be confusing, but until someone walks a mile in your shoes, they will remain unaware. I’m here to tell everyone, who is disabled or has a loved one that is disabled… this is a journey of ups and down. Never forget to smile and wake up daily knowing that you can fight through this! #POTS #RareDisease #ChronicIllness #StevensJohnsonSyndrome