I don't open up to many people about this issue, but I have been lucky enough to be offered a possible cure for my "condition". Some of you may already know about this, but I want to recreate this goal in hopes of finally living life normally.
This goal will be to pay for the treatment they have offered me. Since I am not necessarily disabled as many people are with my condition, my insurance nor a medical grant with be able to cover this. I've been denied for both.
Back Story:
I've struggle with an autonomic disorder since I was 15 years old. I used to be extremely active, but unfortunately one day I collapsed while doing a ten mile hike, and had to be life flighted to a hospital.
It took me eight doctors before finally getting diagnosed. For anyone to know what was actually wrong.
Very few know I was in a wheel chair for a year. I never left my house, and I home schooled myself that year.
I finally was able to get back on my feet, and hardly anyone knows there is something wrong unless I am standing too long, or exercising.
In short, I have a bad nervous system. It does not tell my body how to work right. You use that part of your brain to know when to blink, breathe, and when your heart should pump without having to think about it consciously. My brain struggles with this.
My heart often reaches over 200 beats per minute if I am not on my medication. I have low blood pressure from this that has caused a lot of nerve damage in my legs. Sometimes I am a little slow motor skills wise because of my blood pressure.
Because I have had this for 6 years, my heart now sometimes stops beating for a beat. This happens at least once a day. I also struggled to digest food for a very long time, but I have found a medication for this as well that has helped.
I want to be able to workout normally again someday. To be able to go to Disneyland a full day without struggling to walk the next day from the pain. I want to move past the annual emergency room visits from flare ups. To not constantly need butt loads of sodium to function "ok" throughout the day. I don't want to have to take this medication, or worry about stopping it during pregnancy. I worry sometimes that my heart would fail without these meds, and pregnancy is scary with this condition.
All in all, my life is great. I can continue like this. I don't remember at all what it is like to feel "healthy". They say the easiest way to know how I feel is to put 5 lb weights around each ankle, be drained of blood flow to your brain, and stand inside a tilt-a-whirl ride.
If I actually reach this goal, I will be able to pay for this experimental treatment. It is 4 rounds a month for 6 months, and will cost a close total to what this goal amount is set for.
Please don't feel bad for me or feel pressured to tip towards this. I appreciate even one token. This is something that is really important to me, and the fact it could be possible and realistic that I could be myself again, when I had given up hope, is beyond my wildest dreams. You will know that you invested towards that happiness, and changing my life.
Thank you for reading, and THANK YOU for everyone who puts towards this. I love you all. So much. Thank you.
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