Mandy's Story

printprinte-mail to friende-mail to friend
Mandy
11
Maryland

My name is Mandy and I live in Maryland. When I was very young (I don't remember my exact age) I began to experience odd feelings with my heart rate and other symptoms. When I was 5 years old the doctors told me I had Supraventricular Tachycardia and that it would not impact my life. For a few years they seemed right. Then the summer before I turned 9 things started to change. At times I could not stand, or when I did, I would get so dizzy that I'd have to sit right back down again. I would do something physical and then feel horrible afterwards. Sometimes I would faint and sometimes I just felt really horrible and had to lie down. I had constant headaches, and would almost always be really, really dizzy. The dizziness would come and go and some people thought I was exaggerating about how bad it was. But my Mom and Dad didn't. They knew me better, and though I don't remember much about the early stages of my illness, I do remember that my family was always there for me.

My parents searched for doctors that would tell them what was wrong with me. We went from doctor to doctor at first. My parents kept trying and they didn't give up. Unfortunately, my symptoms got a lot worse when I was 9 and I could hardly function. At first I just got exhausted trying to attend school and keep up with everything but suddenly it got to be where I couldn't even get out of bed. I couldn't stand up and I just felt horrible all the time. I had bad seizures and other stuff that was just horrible.  Really, I don't know how it all happened, because at this point it all happened at a million miles an hour for me. What I do remember is that we finally found out that I had a Dysautonomia condition called Postural Orthostatic Tachycaridia Syndrome (POTS). I was very sick and I don't remember a big part of that time though (my doctor says that's probably for the best). Actually, I don't remember a couple of years as I was just too sick during them.  I couldn't sleep for days on end and I couldn't stand up and my body just totally fell apart. Suddenly, nothing in my life was the same.

One horrible night during one of my very bad episodes my Mom took my hand and promised me a dog of my own if I would just hang in there and take my medicine and stuff. The next day when I felt better I got on the computer and made a form for her and my Dad to sign (just to make sure they kept this promise). I still have this form in my memory box, it reads:

"This certificate entitles Amanda to a dog of her very own on the condition that she follows the doctor's advice and drinks what she needs, eats right, and takes her medications."

Well, my parents signed it and I worked really hard to get my dog and I followed everything the doctors told me. I vividly remember the moment I got to hold my new puppy in my hands. I named her Shadow and she is my Shadow.

Shadow helped me a lot, for she was something to feel good for. She made me push myself physically and I had to get up to let her out , walk her and play with her. She helped me start to get better. She can also sense when I was not feeling good or when I was going to have a seizure and she always came to cuddle with me. She doesn't like to let me out of her sight. She was just perfect for me.

People don't know much about POTS and people don't really understand what it is like to have an invisible chronic illness. It's just the way it is and you can't really blame people for not "knowing" but it does sometimes get frustrating that they don't take the time to try to "understand". I try to rise above the lack of understanding and not let it bother me.

Back in 1999 when I was diagnosed, there was NO information about POTS available. It was newly diagnosed and basically only the specialists knew about it. When I wasn't getting better my cardiologist at Johns Hopkins referred my parents to Dr. Grubb. Dr. Grubb worked all the way in Ohio at the University of Toledo Medical Center and specializes in Dysautonomia conditions. His clinic was over nine hours from us! But we made an appointment and then we packed up and were on the road (Shadow too). It was a long and grueling trip, but it was worth it. Dr. Grubb put me on some medications, and explained more about POTS. He was a huge help. He also helped us start DYNA.

We decided that we didn't want anyone else to go through what we had. We want other families dealing with this to have support and we want to bring about more awareness of these conditions. It was a lot of work and a lot of stress to get a non-profit organization going. Luckily, we had some great people behind us that made it all possible. Now, I know for sure that I'm not alone.

Since I could not do much physically back then I had to find ways to occupy myself. I had one thing going for me, my love of reading. I practically read a book a day. I soon discovered my favorite subject to read about is horses. I wanted to learn more about these animals, so I got more books on them but that was not enough. I wanted first hand experience. I consulted my Mom about it. She was a bit hesitant but in the end she agreed to let me start riding lessons. Dr. Grubb told her it would be good for my legs to get stronger (he has no idea that it was the nicest thing he ever did for me)! I started riding lessons and I got to ride the funniest pony, Frosty. I am working very hard to keep riding and it is helping rebuild my legs and making me stronger. Someday, I'd like to get a horse farm of my own.

Now I live better, I still struggle but I no longer live alone in my POTS world. I have good days and bad days. I pretty much pay for anything physical I do - so I have to be picky about how I spend my time.  Being physical is important though and the doctors explained it would help me get stronger.  I don't get to attend school but they send out a great home teacher.  I really miss my friends.  It was very upsetting at first, but I have learned what really matters in life. I am dealing just fine. I am lucky. I know other people out there are like me, and I know that no matter what I'll always have a place to turn to for support and one incredible friend that will always believe in me, Shadow.

I'd like to thank Dr. Grubb and my parents for helping me find the road to my dreams. I'd also like to thank my brother, Richard. I know I put him through some rough times too. My illness had a big impact on him. We were, still are, and always will be very close. Thanks to all the DYNA members who are there for me when times are really rough. Now it's my turn to be there for someone else and to help someone else find their way in this crazy POTS world we live in.

 

Note: Mandy has partially recovered and graduated from college with a degree in Journalism in 2013 and lives a happy and full life.