I’m not sure if I’ve really mentioned this in any of my blog posts, but I do know that it changed my life.
In 2005, at the beginning of my senior year in high school, I began to exhibit these mysterious symptoms. Really bad migraine headaches, blurred vision, and just having the all around blehs! It all came to a head in August, a few weeks before my 18th birthday, when I was church. All I remember was getting one of my migraines, but it was different. This time the pain took up the whole left side of my head! Not only that my vision was blurry, I was dizzy, and I just didn’t feel right.
Luckily, there was a nurse (and a very good friend studying to be a nurse in school) in the youth room at the time. They helped me out of the room and from then on it gets a little fuzzy. I do remember them trying to check my pulse, and my mom and dad taking me to the hospital, but not much of anything else. The next thing I know I’m waking up in the ER! Of course the ER doctor said it was an “atypical” migraine. I do remember thinking to myself when I left that if my migraines stay this bad there is something wrong!
I’ll spare you the months of running back and forth to the ER, and ambulances, fainting at work…you know normal stuff, lol! Needless to say it took them from the month of August until around October to actually figure out what was wrong with me! It turns out I have a condition known as Dysautonomia, an umbrella term for conditions that are caused by a dysfunctional autonomic nervous system (don’t worry I’ll get you more info on this later).
To be specific, I have a condition known as Postural Orthostatic Tachycardia Syndrome, aka POTS. In plain english, this medical term pretty much translates to this: when I stand my heart rate increases (significantly) and I faint/nearly faint…more or less. POTS is more complicated than patients, non-patients, and yes…even physicians know.
Once I was diagnosed I had to do research, and let me tell you that at the time it was so difficult to find good quality information on the subject! I mostly stumbled upon forums where people just wanted to complain, and just be really negative about the whole thing. Or you come across someone who is totally oblivious about it, but actually thinks they’re an expert on the subject…don’t make me go there it isn’t pretty!
Finally, I stumbled across this non-profit organizations website. The Dysautonomia Youth Network of America…I had to say it was love at first sight. Why? Because instead of being negative they spoke of hope. A way to recover from your illness, no matter if it’s dysautonomia or another illness that’s invisible. There slogan is: “A Ray of Hope” and that is what they were to me and still are to this day!
DYNA has helped countless youths connect with others, so they don’t have to feel alone in their fight. They encourage members to “live your recovery and not your illness”! When the FDA took a much-needed medication off of the market that was used for the treatment of dysautonomia patients DYNA helped get it back. They are small but mighty!
Now, you guys are probably thinking there is a catch to this post…well you are right! Every year DYNA designs a T-shirt via Booster.com and we sell these shirts to help raise money to keep the organization going. There have been multiple times where DYNA has almost had to close its doors because of funding issues! This is why this fundraiser is so important and donations as well!
I’m going to put a link to the fundraiser below and also a link where you can buy another option. This second T-shirt was designed by one of our own members who hosts a 5k walk every year! However, this design is only available while supplies last, so if you want one of those you need to grab them while you can!
I can’t tell you how much this organization means to me! I could literally write a book on the subject! Each and every member is unique, and we help each other in a way no one else can. If you know someone who was recently diagnosed with dysautonomia or if you were recently diagnosed with dysautonomia. Please visit the DYNA website for more information, and do not hesitate to contact us if you have any questions.
The Booster shirts are available until June 1st so get them while you can! I hope you guys have a great day!
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