*** A note from "Officer Tased": This is my wife; she is the strongest person I know. There really is no donation too small - even $1 is deeply appreciated. Thank you for caring for her with me - your support means more than you'll ever know.
Hi everyone, Thank you for taking the time to visit this page and read my story.
There really isn't a short version to my story that also helps paint the whole picture. It's complicated and difficult to understand (even for us) but I have a debilitating neurological condition that has affected my life everyday for nearly the past 9 years. We are unsure what the official cause of it was (so much between trauma, concussions, TBI, black mold exposure, anorexia starvation bouts, car accidents, insomnia, etc) but in a day while hanging out at the mall with my mom and sister I went from a normal collegiate student, to losing the ability to maintain control over my motor functions.
I quickly figured out that oxygen helped alleviate my symptoms (even though my SPO2 levels were fine) so I got my hands on a tank and began using that almost daily. My cute boyfriend (now husband - "Officer Tased") would carry me around when needed, and on very extreme neurological days when I'd lose the ability to breathe, we'd end up in the ER.
Fast forward 9 years and we still have to navigate this condition every day as it changes every season.
I found a couple of modalities that helped relieve my symptoms to a degree where I didn't always need my oxygen, but the condition has always been there. Depending on how I feel when I wake up (which is different everyday), I have to make careful choices to not push my body too far so it remains functioning normally. When I don't, this is my list of possible symptoms:
loss in the ability to walk, balance problems, dizziness, drop attacks (entire loss of muscle tone - like fainting- without losing consciousness), headaches, temperature dysregulation, tremors, difficulty swallowing, brain fog, nausea, poor digestion, sensitivity to light and sound, breathing difficulties, inability to talk, body twisting and curling on its own, numbness in extremities, focal dystonia, non-epileptic convulsions, panic attacks, heart palpitations and regurgitations, gastrointestinal upset, vomiting, facial pain and temporary paralyzation, incontinence, memory decline, voice hoarseness, fatigue, difficulty staying asleep (my husband sleeps on the couch full time now), and on and on the list goes.
If I drive too far (haven't been able to drive for more than 30 minutes in 9 years), listen to music too much, go to the movies, walk too far (right now, that is anything further than around my house), focus too long on reading or listening, get sick, get "too hot", eat the wrong inflammatory food, etc. my body flips out. The threshold of what my body can handle changes everyday.
Where I'm at right now, my dad has had to move in with us cause I've been so extreme in my problems lately.
I have seen dozens of doctors and we have spent thousands and thousands of dollars trying to fix me because we have noticed over the years that even though I'm able to find small relief from time to time, overall I am declining.
Most doctors don't know what to make of my situation. Many have declined me. Some have bravely tried to throw whatever they could think of my way to try and help, but we've never figured out what is it or how to fix it.
But now, we have a doctor in Florida who has reviewed my case and has said "I've seen people like you before" - which is huge for us! He calls what I have going on "dystonic storms" which is basically like lots of mini strokes happening in the cerebellum of my brain.
He has a very thorough assessment he puts his patients through to make sure his procedure of Prolozone being injected into the neck will work and we are eager to try it. Eager to find relief. Eager to, God-willing, live a little more normally.
I know it's not everyone's lot in life to be healed and it would be nothing short of a miracle to find the relief that we've been hunting for nearly a decade, but what if it's possible? What if I could live a long and healthy life and watch my children grow up and spend days into my old age with my husband?
Watching the strain this has put on my family for my care has led me here to ask for help to raise the money I need to make it to my first appointment in Florida and receive the assessment and first procedure. $8200 doesn't even cover the follow up procedures which could possibly happen every 4-6 weeks and it could take up to 8 times before I'm better. (That would estimate to be $2500 every other month)
I have no income. We don't qualify for disability. My husband works as an officer for the local law enforcement, but his income doesn't provide much more than our basics. And don't even get me started on the thousands of dollars of debt we have from other hospital stays, ER trips, appointments up the wazoo, etc.
I feel pathetic to ask for help, but I don't have another option. Even $5 can help me get closer to the goal and I would be deeply grateful for it.
And I know I'm not your responsibility and I can't make any other promise except to do my best when I can to pay it forward with what is hopefully an extended version of my life.
Thank you for taking time to read this super long message. I've attached videos for a visual representation to what I'm trying to explain. But what you see visually is nothing compared to what this all feels like within my systems. It's a crazy condition. I'm lucky to be alive and to have a little family. God has really made the other aspects of my life so rich and beautiful.
Thank you once again
