Postural orthostatic tachycardia syndrome

Everyone is fighting a battle that you know nothing about, so always be kind.

10 years ago I was a healthy kid in middle school.

9 years ago I didn’t understand why I got tired so much faster than other kids my age.

8 years ago I had to wear a heart monitor because my heart rate was over 200 beats per minute. I was diagnosed with Postural Orthostatic Tachycardia Syndrome and Dysautonomia. I was bullied for having to wear it.

7 years ago I was dropping unconscious multiple times a week. I broke my nose 2 times, popped my collar bone out of place, and suffered many bumps and bruises. It got harder and harder everyday to wake up. I was bullied for passing out in school.

6 years ago I was put on a medication that left me temporarily paralyzed and my blood pressure was 65 over 40. I was admitted into the hospital. I was put on steroids that made me puffy. I was bullied for being “fat”.

5 years ago I realized I couldn’t speak correctly, it all came out as slurs. I had no balance. I lost over 30 lbs in 2 months. I weighed 50 pounds less than I currently do. I was bullied for being “too skinny”. I was diagnosed with Graves Disease and Hyperthyroidism.

4 years ago I finally found help at the Cleveland Clinic and was able to go away to college.

3 years ago I started having the energy to go out on the weekends with my friends.

2 years ago I was living in NYC attending the Fashion School of my dreams.

1 year ago I started working out again and running like I did 10 years ago.

Currently, I am the happiest and healthiest I have ever been in my life. I still struggle with these chronic illnesses, but they will never win because I am a fighter.

September 28-Oct 4, 2015 is Invisible Illness Awareness Week. I fight daily, silently, and without any signs along with thousands of other people. With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses. Point blank, it sucks. You can help make a difference by doing one simple thing; never mock a pain you have never endured. I look back on that girl in high school and wish I could tell her that her daily tears and wishes of it all to just come to an end aren’t worth it because life is beautiful and will get better. If you are fighting, just remember to smile because life is a fairy tale and it will end happily ever after, so if you’re not happy, just wait because it’s not the end.

POTS. No, not marijuana or pots and pans that you cook with. I’m talking about Postural orthostatic tachycardia syndrome. My life was completely changed when I was diagnosed with the chronic illness, POTS, in June of 2008. I never wanted to blog about my illnesses (yes, there are more), but I feel like I have to because it’s such a big part of my life and I know others are struggling with this debilitating illness.

What is POTS? I’m obviously not a doctor, but there have been many times where I felt like I knew a lot more then them. So, I’m going to try and explain this in the simplest way. It’s a form of dysautonomia. I lost you already, didn’t I?

“Dysautonomia is an umbrella term for various conditions in which the autonomic nervous system (ANS) malfunctions. Dysautonomia is a type of neuropathy affecting the nerves that carry information from the brain and spinal cord to the heart, bladder, intestines, sweat glands, pupils, and blood vessels.” Yes, I did just copy and paste that from wikipedia. We’ve all done it.

Okay, here we go again- POTS is a form of dysautonomia that mainly affects the patient when they’re in the upright position or when he or she changes positions. Personally, my blood pressure is typically low (90/40) and drops even more when I stand up. While my blood pressure is going down, my heart rate is typically jumping up to almost 200 beats per minute. (Fun Fact: I used to have a heart monitor that my doctors thought wasn’t working correctly because it would read my heart rate at almost 250 beats per minute. It wasn’t broken, I was.) So, heart rate goes up, blood pressure goes down and so does Emily. Yup, that’s right I drop unconscious. Lately, knock on wood, it hasn’t been happening that often, but back in high school it was a daily struggle. Think of all the things your body does subconsciously; heart rate, blood pressure, nervous system, digestive system, ect… With POTS, they basically throw tantrums and stop working. Not all at once and sometimes they’re all working fine, but when one goes haywire I can become debilitated.

Let’s start with my head, besides the fainting. How often does someone ask you if you are on drugs? Happens to me a lot. My eyes get totally glassy and I get this “duh” look to my face because I’m so out of it. I’ll get so disoriented that I’ll move my head and it will take my eyes a second to catch up. On a really bad day, me carrying a conversation is such a task. I have literally made up words and have not made any sense to my friends and family before. For example, if this blog post isn’t flowing as well as usually and not making sense, blame it on the POTS, for real.

My eyeballs! I’ve always have had okay vision. I’ve needed glasses for close work, but I can function without them. With POTS, one day my vision can be perfect and the next day I have my glasses glued to my head. Sometimes I can’t even see. Pretty cool, huh? Just kidding, it’s pretty terrifying, especially if I’m somewhere new. My family can tell when this happens because I put my hands on the walls and feel my way to the nearest chair. I’m a pretty good navigator, they call me Sacagawea. Haha, not really. My friends and family do tell me I have zombie eyes sometimes, though; One pupil will be really big and the other will be super small. Hence, zombie eyes.

Okay, down to my heart, it’s tachy. Tachycardia that is. I thank God everyday that the mechanisms of my heart are all okay, but it’s pretty scary and at times painful to all of a sudden have your heart rate shoot up.

Alright, to be completely honest, my eyes are doing weird things right now, so I’m going to wrap this part up and finish in a day or two.

POTS is considered an invisible illness. Most of the time I just look super tired and out of it. With that, be kind to all and never judge because someone may be fighting a battle you know nothing about. Until next time! xoxo