Thanks for deciding to read this. Here is my story...
I used to be an energetic girl. Even as a child I never watched TV and I was excited to get my first real job at 14. I look back at pictures of myself hiking, learning to surf, four-wheeling, and just living life and wonder what the girl in those pictures would say if I told her that her life as she knew it was about to change forever. I became ill in February of 2008 (my freshman year of college) after a bad bout of mono. I suddenly had a constant low grade fever, poor memory, swollen lymph nodes, and became fatigued very easily. Long story short, I went to almost 20 doctors between 2008 and 2012. Doctors either didn't believe me, or didn't know what was wrong. Sometimes I wondered if I was crazy and nothing was actually wrong with me. Treatments I tried included anti-depressants, a tonsillectomy, hormone therapy, vitamin injections, fibromyalgia drugs, steroids, extreme exercise, mild exercise, diet modifications: and the list goes on and on.
I tried to live my life to the fullest as a chronically ill college student. My "mystery" illness made any sort of social life pretty difficult, but I did all I could to get as much experience in my field as possible. My dream was to make a difference in the world. I volunteered at a crisis and suicide intervention hotline, interned at a homeless shelter, supported individuals with disabilities, was a teaching assistant, and of course, was a fulltime student. I was on ADHD medication and tons of caffeine to keep me going. Feeling exhausted and flu-ish became normal to me and I considered it my version of healthy. After graduating college, I scored an amazing job at an agency building a department to support high school students with developmental disabilities and their families. A few months after starting, my health took a sudden turn for the worst. After about half a year of working, my body would no longer allow me to cover up my symptoms with medication and a smile... it absolutely gave out. I had to give up my job, my apartment, what had become my hometown, and worst of all, my independence.
In 2012 I finally got diagnosed with a type of dysautonomia called POTS which stands for Postural Orthostatic Tachycardia Syndrome. It was such a relief to know it wasn't all in my head as some doctors had told me. When lying down, my heart beats at about 70 beats a minute but standing, my heart rate jumps to 110-140 beats per minute. This syndrome is a result of a malfunctioning autonomic nervous system so the symptom list seems endless. I experience severe fatigue, abdominal pain, dizziness, pre-syncope, nausea, vomiting, orthostatic hypotension, brain fog, joint pain, muscle aches, and all kinds of other symptoms. The most scary symptom is pre-syncope which is what occurs right before fainting. It is extremely difficult to live life like this. I don't even know that most people would call what I am living a life. My diagnosis was too late. I had already lost everything, except (Thank God) my family. There is no cure, but medication and exercise among other things are supposed to relieve symptoms. I went to Mayo Clinic and received a treatment plan. I have now been following the plan for 9 months, but I am still very debilitated. My Mayo Clinic doctor agrees, something further needs to be done.
I think I have found what that something is and is called The POTS Treatment Center in Dallas Texas. My main issue is my Autonomic Nervous System (ANS) has gone haywire. The ANS is something that, with training from doctors, people can learn to regulate. The therapy is a combination biofeedback, exercise, nutrition, relaxation of the ANS, physiological stress management, and regulation of heart rate. The POTS Treatment Center has given many people suffering from POTS their life back. Here is their website: http://www.potstreatmentcenter.com/#! and here are bunches of testimonials: http://www.youtube.com/user/PotsTreatment When I watch the videos of others describing how so many other treatments failed them and this time it finally worked, I am filled with so much hope.
I want to be able to run around with my stepdaughter. I want to go hiking with my fiancé. I want my family to be able to count on me to be at Christmas. I want to volunteer in the community and hold a job. I want to run errands for people when they are sick rather than them constantly doing things for me because I am sick every single day. Heck, I want to be able to run to the grocery store without thinking about if I'll pass out or not. Any bit of assistance helping me get healthy enough to reach these goals would be much appreciated.
The treatment center charges $5000.00. Travel alone for me and my nurse/assistant, er... I mean mom, is $900.00 plus $500.00 for a rental car. The clinic will be recommending supplements. Those tend to get costly since insurance does not cover them. The money I receive through this fundraiser will pay for use of this website to collect money, the treatment center, transportation, food, medicine, supplements, and hotel for my 2 week treatment in Dallas. Money that is left over, or money I receive beyond my goal amount, will go toward other costs I have thanks to my lovely chronic illness.
If you're interested in learning more about my story, visit my blog at www.lethargicsmiles.wordpress.com
Thanks for reading and considering donating -- tell your friends and family about my fundraiser. Any help you can give me will mean more to my family than words can express.
P.S. So far, some people prefer to donate via check. If this is the case for you, just contact me!
- Elizabeth Milo
- Glenn Daugherity
- Jason Daugherity
- Streator Leads Group
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