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ACrolley1
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Hi, I’m Amanda. I’ve been alive for 15 years now and I have been diagnosed with POTS and what my doctor has described as a genetic form of Dysautonomia. He likes to call my case “POTS plus” because there are an array of other problems which follow my POTS diagnosis. I am currently unable to attend school, so I take all of my classes online. It works out really well so I can complete work on my own time and when my symptoms are not too much of a bother. I believe that one of the most important things you need to know about me is that I am a Christian. Having faith in God is the basis for my life.

I love Jacksonville, Fl. That’s where I live. I absolutely love the beach. I’m not sure what my friends and I would do without the beach. I’ve planned my entire wedding to take place on the beach, though I have yet to even have a boyfriend. However, it is something that I have thought a great deal about, as I am sure every other girl has. (Smile) I love to read. I’ve been like this since I was a kid, before I was gigantically tall and over talkative. I’m fascinated by the human body. I spend a great deal of time researching all sorts of topics, especially those which have some sort of relation to Dysautonomia/POTS. I have always wanted to become a surgeon. I guess you could say that would be my dream job. Grey’s Anatomy is my favorite show. I hate being alone. I have a dog. Her name is Sophie and she is a yorkie-poo. I hang out with my friends a lot. Almost every weekend. I love spending time with my family. We always come up with different things we can do together that will be fun and different. I am very thankful to have so many people in my life that I love and I know they love me back! I really love listening to music. Any genre will do but my all time favorite artist is Chris Tomlin. I love to listen to his music because it’s very uplifting and it always puts me in a good mood!

I write in a journal. I have found it to be a very therapeutic tool in living with D/POTS. I can write down everything I am feeling, good or bad, and when I look back at what I have written a few months later I can see how certain events have impacted my life. My friends vent to me about their problems all the time which is totally cool. Even if I have no utter clue what to say, I know that just listening makes them feel better. However, I have never returned the favor. I think it might be safe to say that I have an issue with pride. My friends have their own problems and I feel like the last thing they need is to hear mine. I like to experiment with lots of things. Especially with food. Now that I am on a high sodium diet I try and put salt in EVERYTHING. I even tried to drink salt water which wasn’t such a good idea. I’m totally open to new ideas with this. I’m a very outspoken person. Sometimes it gets me in trouble, but I learn from my mistakes.

I’m pretty stoked that you read this whole thing. I commend you for that. I’m sure there is a list of other things you could have been doing instead of reading this. So thank you. Reply to this thread or send me a message. I love to talk. (Smile)

-A

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Hi Amanda-

Welcome to the forum. You are to be commended for keeping up with your education in spite of all the roadblocks POTS plus puts in your way. I am very happy for you that you have such a strong network of friends.

What meds does your doc have you on? Or are you able to manage at this point with just increased salt and water?

Heat intolerance is a very big problem for me. I don't think I could last in Jacksonville. Glad that you are able to enjoy the beach.

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Hi Reen!

For now I am only taking Atenenol. 25 mg doses twice daily. I saw a doctor in Gainesville about 3 weeks ago and he said he was going to talk to a colleague who specializes in autonomic dysfunction to see what others meds I should start taking. He heavily emphasized the importance of increasing my water and sodium intake so I have been focusing on that a lot. My water bottle has become my new best friend! (Smile) I can get around fairly well, after about 15 minutes of walking I need to find a place to sit though. I'm hopeful that once I can get started on some meds and physical therapy I will be able to tolerate normal activities a little better.

It has definitely been tough trying to adjust to beach life. The heat completely wipes me out (as I'm sure you know!) but I knew I had to figure out a way to make it work. We bought an umbrella with a special lining on the inside to help reflect heat better than a regular umbrella, I make sure to bring lots of gatorade and salty snacks, and I also bring a couple ice packs to put on the back of my neck and chest if I start getting really hot. It took awhile to figure out all the tricks... but we finally got it right! (Smile)

-A

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Hi Godsgal!

I honestly have no idea what I would do without God in my life. He is definately the One that is able to get me through the day! (Smile) We're actually hoping to get an appointment at Mayo soon. I recently visited a doctor in Gainesville who has been talking with colleagues about my case. He contacted me this past week and said that he would really like for me to be seen at Mayo. Mayo is out of our insurance network, but we are hoping that with a letter from him stating that he feels this appointment is necessary that we will be able to get in.

-A

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  • 2 weeks later...

HI AMANDA! :D :D

I loved reading your post, what a breath of fresh air! :D Welcome to the site, I am a complete newbie too, but we will get there!! :D :D Pleased to make your acquaintance :) :)

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Hi Amanda,

I am sixteen years old. I too am too sick to attend school, although i do home bound schooling instead of online. This means a tutor is my connection with the school and brings me my work. I have only beome too sick to attend school with in the last couple months. I i actually miss school, i never thought i would be saying that. It's nice to know that theres someone my age going through some of the same things i am, not that i would wish them on anyone. It's hard to get past some of the feelings of being alone. my family and friends, although try, they don't understand what i am going through, and hat affect it is having on my life. your positive attitude and faith inspires me. I hope we get better soon!!:)

- Brynne

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