Help Me Fix My Brain

My name is Sarah. Here is my story. I am trying to raise the funds to go to Denver 8/21/19 - 9/4/19 to try to rewire or retrain my brain so I can learn how to have better self-control and also how to just make my brain work how it is supposed to. This is my chance to get better; there is nothing I want more in the world than to be a better daughter, sister, niece, auntie, cousin, friend, patient, volunteer, peer,  etc…
I really want to be a better human. 
I appreciate anything anyone can do to help.* My apologies that this is sort of an urgent situation. You can trust me that I will follow my promise at the bottom of my story. 

From the beginning...

15 years ago, in a freak accident, I hit my head pretty hard on some concrete when I fell out of a golf cart. No one was doing anything wrong, except me. I wasn’t holding on. I was driven by ambulance to my local hospital and then flown by Flight for Life to the nearest hospital that would be better equipped to deal with my injuries. After the swelling in my brain began to go down, and a bunch of CT scans, (I’ve been told, I don’t have any recollection of my accident, or the weeks following), I was released from the Neuro ICU home with a follow up appointment in one month. The instructions given to my mom and aunt when I was discharged were that I was not allowed to drive (to be reassessed at follow up appointment), no independent walking or doing stairs, lots of rest, and drink water.  Fast forward 1 month to my follow up appointment. I don’t recall what happened. I believe I had a CT scan, I was told that I could drive again, and that I could begin to school at University of Wisconsin - Milwaukee in the fall.

No one articulated to me exactly I was getting myself into or exactly what had happened to my brain. This was truly a test of determination and inner strength.

Holy Learning Curve...

I knew something was wrong, but I couldn't put my finger on it.  I used to have a really good memory, but now I was struggling now to remember how to get to classes or where they were. I didn’t know how to study anymore and so I tried different ways for different classes or different exams and for the first time in my entire life I was getting “D’s”. I had a difficult time focusing on what people were telling me, it was like when they were talking to me, I could see lips moving but I wasn’t understanding what was coming out of their mouths. In all honesty, there were many many times that I wanted to drop out of school because I was so frustrated. I didn’t know who I was or why I couldn’t do what I had done before. I can’t tell time on an analog clock or get to class on time because I can’t remember where it is?

Self Advocacy...

I advocated to see a neurologist over and over, and finally in 2006, shortly after my dad died, I saw one. This man prescribed me medications that are generally psychotropic medications used for bipolar disorder and depression. They were incredibly ineffective but made my affect completely flat.. I was walking around listless. I began advocating with my primary care doctor for help to figure out what was going on. For 11 years I advocated for something to be done to see why things these weird things were happening. I kept getting “here is a migraine medication.” I got referrals for psychiatrists or therapists, where I got more “here is a medication for this or that diagnosis…” or “why don’t you try mindfulness or yoga?”  I tried those things. They weren't working and after 11 years, I was able to get a CT scan. It was "normal" or as normal as it could be I guess.

Post Graduation Struggles....

After I finally found my niche in school, Social Work, and by some miracle and a lot of hard work, I graduated in 2009. I began to work in the field of child welfare. I always struggled to meet timelines; I don’t think there is a case note that I ever entered that wasn’t late. I struggled, no matter how hard I worked, how long of days I worked or how much I tried to block out the rest of the world and distractions, to get words from my head, to the computer in a structured sentence. Or even appropriate words. I often lost words (lose words). Unfortunately, writing was better than having me just say it though because my impulse control wasn’t there. My filter to not always say what I was thinking does not exist and while I hadn’t really ever had a huge issue with it before, I was not working in a field where I was extremely passionate about my job and the children and families I was working for day in and day out.

My headaches were constant and were overpowering but I was much less fatigued at that time in my life and was able to make myself get up on and go to work. Even through my next endeavor working with children and families where I was investigating referrals of abuse and neglect, I saw some of the ugliest things humans can do and I worked so hard just to keep up with the amount of paperwork. Even if I wasn’t approved overtime, I was working 60+ hour weeks because what took my coworkers maybe 30 minutes to do, took me 90 minutes to do. I knew what I wanted to say but I couldn’t get it on the paper to make my cases to the court. I had to take diligent notes on my home visits and enter seriously detailed case notes so that I wouldn’t miss anything. My headaches were constant and not avoidable. Caffeine was becoming my life. Headaches were coming from work, were starting at work and work was becoming a headache. 

Finally, Someone Heard Me...

The last straw with headaches and work was in October 2017, by the wend of October I had be enduring a headache for almost 45 days that was on the pain scale, probably between a 8-10 constantly. Nothing was helping ; caffeine wasn't touching it, migraine medications weren't touching it, all I could do, was lay in a pitch black room with ice packs and my eyes covered, crying, which i am positive did not help, and hope like hell that the pain would break. Finally I was made to go to the emergency room. At the emergency room, for the second time in that same week, finally someone took me seriously. I had my first ever MRI in 2017. I had an EEG. People finally started to listen to me and to the things I had been saying for years. I have never had OT, ST, PT, nothing like that…. which brings us to today...

Hope City!

I have been offered one of the best opportunities ever. I met Dr. Perry Maynard when I was in Denver, Colorado visiting family in late May 2019. He is a chiropractic neurologist that specializes in the management of complex neurological cases. He likes to do neurological rehabilitation but using a functional medicine approach.

This is where I need help. Until talking with Dr. Maynard, I did not even realize or think about insurance or money. Insurance will not cover this. I have no income. I haven’t since I have been fighting with SSA since 11/2017 (thanks Mom). I need to raise money to pay for the treatment, flights, rental car, food and lodging, and any unexpected things that I am sure will come up. 

What are Dr. Maynard's Recommendations??

So, Dr. Maynard’s recommendations for me are 6 days of super intensive treatment. It is a Friday, then Monday – Friday. There is a battery of testing and scans and labs and from there an individualized care plan to encourage my brain to rewire itself or retrain itself, obviously with continued hard work from me outside of that week.

Where You Come In......

This is what I have been looking for. This is a huge opportunity for me and I am not certain that another one will come along.
My lovely Aunt Barb has made me hate this phrase, as she used to say it to me while she stole my money in Monopoly, but she is right when it comes to this: Every little bit helps.
I am terrible at asking for help and even worse at asking for help with money, but I really appreciate any help anyone can give me. 

*Just as a sidebar: Any money that is donated and I end up not having to use will be paid forward and donated onward to three other foundations that mean the world to me; American Foundation for Suicide Prevention, Noonan Syndrome Foundation, and The Brain Injury Alliance of Wisconsin.