November 22, 2020

Hello friends!

It has been a little over a week since I posted my campaign. I’ve got to tell you how truly in awe I am of the support I have gotten so far. It has been an amazing experience to see messages of love and support from elementary school friends, to people I’ve never even met. I am feeling unbelievably blessed.

I have decided to add a financial goal for the campaign. It has been really hard figuring out a number, for many reasons. One, it’s a lot. I’m asking for a lot of help, and it feels uncomfortable. Two, it’s seems so selfish to ask for so much, and give back nothing in return. Three, and really the crux of the issue; I don’t want/like to admit how great my need really is. To others, but especially myself.

Denise, my coordinator, helped put my “ask” into perspective. She reminded me I don’t have a car to retrofit, should I be able to get my license. That I have over 18k left of medical debt from my second opinion at the Mayo Clinic (that “surprise!”wasn’t covered”. She reminded me how large a percentage my out of pocket insurance costs were as compared to my yearly net income. She reminded me of the last fact, before I got a letter (and subsequent phone call) stating that my health insurance will be increasing so much next year, that it will eat up 45-50% of my disability income. 45-50% of my net income will go to private insurance, so that I can see the doctors I need to see.

With all of that information finally settled in my brain, I am setting a goal of $50,000. It sounds insane. This all sounds insane. But we’re doing it.

I am grateful beyond words for you spending a piece of your day here with me.

✌️

November 16, 2020

“So…what actually happened?”,is a question I’ve gotten used to fielding. Saying it’s complicated, is quite an understatement. This is the best way I currently know how, to fill you in:

On August 4th, 2017, I woke up and immediately realized something was wrong. I couldn’t move my arms and legs, and all I could feel was pain.

I was rushed to the hospital, and was having a spinal tap within minutes of getting to the ER. After months of hospital and physical rehabilitation hospitals, I had a diagnosis; autonomic sensory ganglionopathy. Meaning, an unknown autoimmune disease had attacked the ganglion nerve head, both damaging, and killing some of the nerves that go to my arms/hands and legs/feet. I could still move my extremities, but I could not feel HOW I was moving them. I was still strong, and physically capable of walking, but the nerve damage made it impossible for me to move and trust my legs/feet. I KNEW how to grab a cup to pick it up, but I couldn’t tell my hands how to DO it. I knew where my hands should go on the piano and how hard they should strike, but my fingers were bricks and feathers all at once.

Suddenly losing everything that I had worked so hard for (career and apartment I LOVED, car, playing/singing music, independence), has been a struggle to say the least. However, I have worked tirelessly, even going to the Mayo clinic for a second opinion (on my own dime), trying to figure out what’s going on with my body…and really trying to come to terms with my new life as someone with disabilities.

Creating a Facebook page about my disability, has been one of the most helpful things I’ve done since getting sick. I did not create this page until one and a half years after I got sick. I wasn’t ready to share my story with anyone. However, during my return flight from the Mayo Clinic, I traveled alone, and could not believe how hard it was to travel with a disability period, let alone, doing it alone. I hemmed and hawed about sharing the experience. It was not until I emotionally needed more positive energy in my life, that I decided I needed to flip the script. I needed to make it less about ME, and more about acceptance and self-love, noticing how others are treated and doing your best to always give people the best “you” that you possibly can. It’s really about how we can effect change in order to make life with a disability not only manageable, but to make it easier to live a MEANINGFUL, FULFILLING life as well. Through my amazing community of friends, family, and people I’ve never met, I have gone from experiencing what can be a really lonely world for those with disabilities, to having over 300 really amazing people who have my back. They support me. They also truly share my passion for equality and opportunity for all.

Donations will help me to obtain my goal of driving again, as instruction, retrofitting with hand controls, etc., gets expensive. Driving again would allow me to take back a MASSIVE amount of the independence that was taken from me. It would also give my parents a well deserved break. Donations will also help me to pay for my out-of-pocket insurance costs. Lightening the load of the cost that carrying private insurance, because Medicare doesn’t cover my specialists (and…you probably didn’t recognize my diagnosis,so I need specialists), would allow…well, down the road, it would mean as much as not having to choose between rent, and insurance. I’m lucky enough to be able to live with my parents right now.

Hopefully just reading my story is a positive experience for all who visit this page. Yes, I want my freedom back by being able to get on the road! But that’s only part of the work. I want to spread awareness as to how unsure, living with a disability can be. Right now, the world is a really hard place to move through if you are disabled. There are still so many barriers to attaining full inclusivity. I want to encourage everyone to get involved at your local level to get those cracks in the sidewalks fixed for wheelchair users, and to look at the world around you to find ways to make it better for everyone. Yes, these donations are helping me personally, but the rest of the story is about creating positive change wherever you can.

And feel free to join my FB group, we’d love to have you!
www.facebook.com