Last Saturday (April 22nd) Duke Children’s Hospital held their very first PROM! I had the amazing opportunity to not only attend but I got to attend with 3 fantastic ladies that I have gotten to know over the last year online! We share quite the list of medical diagnosis’ and life experiences.
Prom prep started about a week before the actual prom. Cancelling doctors appointments, scheduling doctors appointments, ER visits, lots of medicine, and rest rest rest!
Pre-prom prep (IV fluids, Nutrition, pain meds, steroids and prayer!)
While we got ready for prom before getting our dresses on and doing our make-up we pre-medicated and talked about how much we get it. There was no need to explain anything or feel ashamed because they live it too! (Though I so wish none of us had to, it’s nice to not feel so alone).
We all meet online in a support group for people with POTS. What is POTS you may ask? It stands for Postural Orthostatic Tachycardia Syndrome. Basically when a person with POTS changes positions (laying to sitting, sitting to standing) their blood vessels don’t constrict the way they should causing dizziness, fainting, lightheadedness, fast heart rate, nausea, drop in blood pressure. It is also known as autonomic dysfunction or dysautonomia. So basically everything we don’t consciously control doesn’t work right (heart rate, digestion, blood pressure, breathing, etc.) It’s a constant battle between doing what you think you can and then your body revolting against itself! Every task is a challenge that we proudly (sometimes frustratingly) accept! Whether that is getting up to go to the bathroom or prepping for prom! Each thing we do takes a certain amount of energy and somethings will put us out for days. (I’ll get into that Post-Prom)
Now the fun part! PROOOOOOOOM!
We spent the night dancing, taking pictures (lots of pictures!), chatting, giggling, making memories and so much more! But most importantly we got to put our illnesses aside and just have fun! This fun was different though because we didn’t feel guilty when having to take a break and sit down because when one of us headed for the table all the others followed behind for a little rest. We didn’t have to worry about people judging us for our tubes and central lines because it’s the norm (as it should be)! Everyone looked so beautiful and handsome and it just made my heart so incredibly happy! This night is one I will forever hold so close to my heart!
Post Prom Pains
Here’s the “somethings will put us out for days” part….The ugly, ugly side of chronic illness.
Each of these pictures were sent to me by my friends. (My absolutely gorgeous friends in those super cute pictures up there ^^^) . After prom we spent the last week paying for it. And it cost my friends each ER visits and two of them got concussions from fainting. We knew going into prom that we would all spend a good amount of time recovering from the Post-Prom POTS Hangover. We try and try and try to prevent these hospital trips but our bodies don’t like to cooperate like they should. Another ugly side of not just being chronically ill but having invisible illnesses is that we look healthy. Which means we have to fight that much more for decent health care. Young 20-something year olds aren’t supposed to be sick. We’re supposed to be living the life in college being “normal” young adults! So when we show up at the hospital saying we are sick we CAN’T possibly be actually sick! (GASP!!!!!) *sarcasm lots and lots of sarcasm*
Heck yes we can rock a smile with the vitals of an unconscious person! Just because our lips are curved in an upright position doesn’t mean we aren’t in pain. We are smiling through the pain! #disabledandcute duhhhh! 😀
Collectively the 4 of us have 63 medical diagnosis’ and use 12 medical devices to help us daily in one way or another. But despite all of these we are:
CHRONIC ILLNESS CHAMPIONS
I am so incredibly grateful and blessed to have these girls in my life! They have taught me so much and are such huge supporters in my life! And I love them so so so much! This past week has been filled with lots of peaks and valleys, victories and defeats. But I wouldn’t trade it for the world because I have the most amazing friends ever! We share a very deep and personal connection and I feel like I’ve known these girls my whole life!
Please please please remember that we only show you what we choose to put out for the world to see. It is not always as it seems. We may be out and upright one day but the next day we might be bed bound and unable to get up without assistance. Be patient. Ask questions. Treat us the same. Don’t judge us. Despite our unreliable health we are pretty freaking awesome people and are some of the most loyal friends you will have. Look past the long list of health issues because we are so much more than that! Don’t forget that we do have challenges but we don’t let them stop us! We navigate our obstacles a little differently. Most importantly just love us because we will love you back!
Though in a valley. I am happy. And I am loved.
Much much love,