chronic

P.O.T.S.

Postural Orthostatic Tachycardia Syndrom.

You know that feeling when you stand up to quickly and your head just goes, “NOPE!” Headrush, right?

IMAGINE HAVING THAT ONLY WORSE.

Your vision starts to go, you can’t stand up, your heart rate spikes, it’s like everything around you is starting to dissappear, and sometimes you full on pass out. You faint.

I’ve had a very mild case of POTS for a while now. I get up, start walking, and suddenly everything is telling my not to. My vision starts to go black, my legs go weak to the point where I need to sit right on the floor. But it’s never gotten past that.

But today

I got up and started walking. After a few seconds, I start having a dizzy spell. Nothing I’m not used to.

Except this time, my legs don’t just go weak. They don’t work anymore. It’s terrifying to suddenly have your legs refuse to support any of your weight. I could have seriously hurt myself if I hadn’t been trying to sit down in a safe way.

My entire vision goes black except for one tiny dot in the center. My head feels heavy, like my neck can no longer hold it up.

My arms start to loose feeling. It feels like when your foot goes to sleep and you need to wake it up. The pricking feeling you get when it slowly starts to gain that blood flow. Except my arms were losing the blood flow.

It’s so scary. So terrifying. I was so close to losing consciousness. I had lost all control of my own body for what felt like forever, but was more like five or ten seconds.

I think I’m getting worse, and I’m scared. POTS usually goes along with several other disorders, like Ehlers-Danlos Syndrom, and Mast Cell Activation Disorder. I have those too. None of these are curable. It’s not like I can surgically remove anything like you do when your appendix ruptures or you have a hernia. I’m stuck like this for the rest of my life, and there’s nothing I can do about it besides find ways to cope.

I have to learn to live with several chronic illnesses.

  • friend: Hey, did you want to do something today?
  • Me: Can't, did a thing yesterday
Please help me find someone else with my rare conditon

My name is Valerie, I’m a teenager, and I’m chronically ill. 

I’ve been sick for a decade now, and unfortunately, I tend to get all the rare and ~special~ disorders. Because of this, I currently have doctors in nine cities spanning across five states. I battle six chronic conditions, and balancing them is a daily struggle, but I’ve managed. 

But my newest condition has turned my life upside down. It’s called Recurrent Subacute Thyroiditis (RSAT) and most doctors will never see a case of this in their lifetime. I luckily have found a doctor who has least seen a few cases of this before, but I am the youngest person she has ever seen with this condition. 

RSAT is an inflammation of the thyroid that causes overactivity, leading to high heart rates, trouble breathing, low blood pressure, dizziness, chest pains, insomnia, fatigue, hair loss, and muscle weakness. The overactivity lasts for about 2-3 months, and then the thyroid flips to inactivity, leading to lethargy, extreme fatigue, depression, low body temperature, and slow heart rates. The inactivity lasts for 2-3 months, making this a 4-6 month condition. I’m currently in the middle of my second episode, and my first episode was just two years ago.

I am terrified. This condition has caused me to be rushed to the ER twice. This condition has rendered me so dizzy and dropped my blood pressure so low that walking is a hazard and I am in a wheelchair. This condition has prevented me from attending school since the end of October. This condition can occur again, and there is no telling when or how often. 

I’ve scoured the web, posted in countless Facebook groups, analyzed research, and even scheduled a conference call with doctors in another country to try to get some answers. Not only is there no information on it, but I can’t find anyone else with it (and due to HIPPA laws, my doctor is not allowed to connect me with the other cases she has seen). I have support from my friends and family, but they cannot even begin to understand what this is like. 

I am alone in this right now, but I know the internet is a powerful place. I’ve seen other kids with rare conditions find support and/or answers, and I thought I might as well give it a shot. Please, please - even if you don’t have this condition, even if you don’t know me, please reblog this and spread this around. I just need to know that I’m not alone in this. Even finding one person who has this would make the world of a difference.

Thank you in advance. Those who know me best know I absolutely hate asking for help, but I can’t do this alone anymore.