Life with Pots-Postural Orthostatic Tachycardia Syndrome (NANOWRIMO2019)

Introduction

The worst thing about chronic illness, is waking up one day to not being yourself. I was the superhero before, the martyr, the one with all the energy. I lived at the parks, libraries and zoos. I went from chasing my children, to laying on the couch unable to move. 

I guess I should start by introducing myself. I plan to write this as part of Nanowrimo. Just another way for me to creatively express myself, sometimes in the only way possible. I am a thirty something year old mother of four amazing children. To protect them, I will use initials for their names. Children deserve privacy.

In 2015 I underwent a semi-emergent C-section to deliver my third child. I lost 1500ml of blood in surgery. It was kind of surreal because as much as the doctors tried to act like everything was okay, I knew it wasn't. I could smell the blood. It was obvious they were worried. My midwife was fascinated because hospitals these days use something called a cell saver, which suctions your blood up, sends it into a centrifuge, cleans it and then spits it back into your own body. I got about 1000ml's of my own blood back. For the most part I thought the c-section went great. It was nice to be able to sit for once. It was after when things changed.  

I was 311lbs after my daughter was born. At some point I got up to 315lbs. I've always been overweight, I'm still overweight. I decided after her birth, I was exhausted with being fat. So I thought, why not lose weight? I searched the internet for inspiration. I figured, change my diet, start exercising, what could go wrong? 

Everything...

A few months after R was born, we're going to have to use her middle initial, because the first is the same as her older brother,  I got an apple watch for an anniversary present. Don't ask which anniversary, I don't remember. I was serious. I was going to lose weight and take better care of myself. I noticed that walking long distances was harder. I was overheating faster, my feet ached, of course carrying a good extra 150lbs (read an entire person extra) would be painful. I was just blissfully unaware how much I had let myself go. 

As time went by and I healed from the c-section, I noticed that I would feel dizzy often and light headed. I would feel like my heart was beating out of my chest. Several things were happening at once. I went to the doctor to get an idea of how to lose weight and make it stick. She put me on a vegan diet. I felt like shit. It did not work. I lost 10lbs and then it stopped working. Obviously me and vegan did not jive. So I started eating meat again and felt somewhat better.

Then I looked for birth control, I mean let's be honest, the worst way to lose weight is to get pregnant again. I was never on it before and I started with the Nuva Ring. Time went on and I kept feeling light headed. I started trying to be more active, like at the park, doing laps while my two older boys who were 1.5 years old and five years old played. When I could, I hit my local gym and used their indoor track. I asked my sister, the fitness guru how to train for a 5k. I watched Extreme Makeover with Chris Powell. The one common theme I saw with that is that most gained their weight back. 

And despite my efforts, dizziness remained. I googled my symptoms, beginning to get concerned about them. Occasionally I ran across POTS but most of the time I saw signs of anemia. Yet my hemoglobin (that's the number that measures the iron in your blood) was normal. I kept asking my doctor, when...when will I feel normal. 

Then after getting two periods in one month, thanks Nuva Ring for not working for me, by the way if you have a funny shaped cervix and tilted womb, this may not be the best choice for you, I ended up in the ER. I was driving my three kids to go to a local large animal petting zoo that was about an hour drive away. I had gotten into a facebook fight that pissed me off, forgotten to eat, because that is what nursing mothers do and ran out the door. I kept feeling light headed and weak. I called my doctor, she said to pullover which I already had and call an ambulance, which I did. When it arrived, I had to call my husband from work, he was working at a fancy accounting firm, newly hired, my blood pressure was 60/40. The normal top number, systolic is between 90-120, the diastolic aka bottom number is supposed be between 60-80. At the ER I got fluids and was told to check with my doctor. Nothing was wrong with my heart, lungs or anything else.