THE GIRL IN THE WHEELCHAIR JUST STOOD UP: My Story

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First off, this is something that I’ve debated posting for quite some time now, and I’ve come to the conclusion that it is important. What I’m about to say is a lot more personal and more close to my heart (literally) than anything I’ve ever shared with my readers and followers. The last thing I want is for this to look like or turn into a “pity party”. I consider you all to be my friends and have received nothing but support from all of you thus far.

During my junior year of high school, I was diagnosed with a rare condition called “Postural Orthostatic Tachycardia Syndrome”, also known as “POTS”. When somebody has POTS, their heart rate increases 30-40 beats faster per minute when going from laying down/sitting to standing upright.

POTS caused me to have migraines, chest pains, nausea, muscle aching and weakness, extreme dizziness, fatigue, sometimes even fainting. I withdrew from public high school in the middle of my junior year because the symptoms became overbearing; I then began Cyber School. I was able to overcome most of my symptoms over the course of about six months, and I returned to school for my senior year. There have been times when I’d need to take over 10 medications per day to cope with the symptoms.

It was my ultimate dream to attend college at the Fashion Institute of Technology in New York City. I felt incredibly fortunate to have even gotten in; my dreams had come true! I started at FIT last fall, and those four months had to have been THE happiest times of my entire life. I felt like I belonged. I would wake up every single morning feeling like a five year old on Christmas morning.

I went back to FIT for my second semester this January, and things were a bit different. My symptoms worsened aggressively again, causing me visits to the ER and to be wheelchair bound…wheeling around NYC is far from simple. Over the past couple of months, I’ve worsened to the point that I can’t live on my own. I’ve withdrawn from FIT, something I had never imagined doing. However I refuse to let my illness define me. I’ve always been a very independent person, relying on my parents for everything again is not something I like, but I am eternally grateful for their love and support. I don’t know HOW they put up with my smartass on a daily basis.

I suppose my main intention with this post is to spread some awareness. Yes, despite the wheelchair I appear to be healthy. I’m constantly publishing outfit posts in beautiful new clothing. I’m doing what I love! Just on a smaller scale, outside of NYC for the time being. To further explain my blog and Instagram pictures, I typically stand for 5-10 minutes per day. If I want to do a blog post and take photos of my outfits, I will stand in my 6-inch heels and spin in circles to capture the perfect photo. I’ll likely fall over afterward and not be able to stand for the rest of the day. Then again, I have good days and I have bad days.

POTS is a silent illness. I can appear to be lazy or even drunk when I attempt to walk because I have little balance or stability. I am in a wheelchair most days, and other days I can walk a bit. I take advantage of the days that I can walk at all. Living with POTS, or any chronic illness means routinely reminding your body that your mind still has a greater plan for your life. You won’t be sitting in bed for the rest of your life. At times, there’s an overbearing feeling of grief and loss for your dreams. However, you simultaneously know that if you’re passionate enough, you’ll be able to achieve as much or maybe even more than the next person.

In the future, I plan to increase philanthropic efforts in relation to POTS and dysautonomia in general. I have yet to make any definitive plans relating to charitable organizations, but I hope that some of you will help me when the time comes!

To sum it up, I want you ALL to remember that everyone has their obstacles. Be mindful. Be kind. Do something nice for somebody today.

13 Comments
  1. I had no idea that you were living with POTS, but I admire your courage and positiviity through it all. Thank you for sharing something so very personal and I have no doubt it was a tough decesion. This reminds me so much of my mom who was diagnosed with Multiple Sclerosis, only she became completely wheel chair bound and eventually bed ridden. She always had a positive spirit though and never gave up hope. You have such a beautiful soul and are absolutely stunning! I know that you will achieve your dreams and enjoy what life has to offer despite this obstacle. Thanks again for sharing your story.

    amandabrezovsky.com

    1. Hey Amanda! Thank you so much for your beautiful comment. It truly means so much coming from you. Thanks for taking the time out of your day to read it! I’ve been absolutely loving your blog lately! Who knew that somebody could style a baby bump so perfectly? Enjoy your day.

      Caroline

  2. Hey I know what living with a chronic illness is like. I have RSD on my right side of my body and I have pseudo tumor cerbri. I am glad you are one of the strong ones who doesn’t let their illness define them.

    1. Thank you Christina! It’s definitely not easy, but it will surely make you a stronger person! Have a wonderful rest of your weekend.

  3. I think it is great that you are doing what you love as best as possible. I don’t know your illness, but I hope that you will recover to the extent that you can truly fulfill your dreams. You seem very strong in this blog post, so I am sure you will make it! Believe in yourself <3

    1. Thank you so much! That means a lot to me. I’m just taking things one step at a time. I hope you’re having a great weekend!

      xoxo, Caroline

  4. Wow. Thank you for sharing. I think it is important to share stories like yours. It does not have to evoke pity but sympathy and compassion and some understanding for the trials and tribulations that others endure. It is so easy to get caught up in our individual lives and not realise how lucky we are or how much we have to appreciate. Sometimes it is the small things.

  5. yourarticle was great,lot of info about your disease called pots . thanks for making people aware of this disease. My daughter is in a wheelchair so I have a great passion for all people who use a wheelchair every day

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