December 30, 2020

Hi all!
I have 2, low-dose chemo infusions, every four months to keep my symptoms away (excruciating pain, difficulty ambulating), and to suppress my immune system from attacking itself futher. I had my first infusion of two for the month, yesterday. I brought my stack of thank you cards with me, as the six hour infusion can get BORING (and, I really wanted to get them out).

I cannot tell you how long it took for me to be able to put pen to paper. I had NO idea how to write “thank you”, and have it feel like an appropriate and big enough sentiment to use for how I feel. I cannot express how overwhelmed I am by all of the support you have given me. Not just with your donations, but the emotional support that I feel everytime yes, someone financially donates, but everytime someone shares the campaign, or likes a post about the campaign that I share…it’s an outstanding feeling.

This support emboldens me to keep going. It helps me know that I’m moving in the right direction and that you support that course. It touches my heart, in the deepest, most meaningful way..it warms me.

So, when you get a “thank you” card from me, please know, I don’t know that I’ll ever have the words to express how much this has meant to me, but I know that “thank you”, doesn’t even come close to covering it.
✌️

December 24, 2020

Singing this song in church every year on Christmas Eve during the offertory, was a tradition I was honored to have. This entire year, it seems everyone has needed something; money, support, love, health, a HUG..something. The good thing about this year, is that, just like at Peace Lutheran during the offertory, people gave what they could. It may not seem like there is much to be thankful for after this year, but look closer. People really have come together to help, in whatever way they can, to try and make things better for someone else. It’s a beautiful thing to see. So, with some nostalgia, some hope for good things to come, and some Christmas spirit, I hope you enjoy my offering.
❤️

December 19, 2020

Hi help hope live family! I hope this update finds you well, if not just a touch stressed about the holidays!

I wanted to drop a quick note to the newcomers, to welcome you all into my story, and my life. My story was recently picked up by a local news source, and I’m blown away by the people I have heard from, as a direct result of the press. I am being interviewed by another source this week, and am hoping that my story is read as one of hope, determination, and a reminder of all the good there is in this world; no matter how hard it may be to find sometimes. There is so much good here.

Please, make yourselves at home here, by reading my updates, goals, how far I’ve already come, and where I want to go from here. Thank you for your support. Thank you for taking the time to even peek at my story, thank you for being you.

Please feel free to join my FB page dedicated to education, awareness, support, and yes…my story. Really though, my true goal is to make this world better for those with disabilities. That’s the goal. So if you can’t afford to donate…that is A-Ok. I would ask though, that your eyes begin to see the world from a disabled persons standpoint. Can they maneuver your world as well as you can? If the answer is no….let’s fix it. That’s really my biggest goal of all.

Thank you again for your support and time. I’m beyond thankful for all of you, in the millions of ways that you’ve all helped me so far.

✌️www.facebook.com

December 7, 2020

Hi all!
I hope your transition into December and the full swing of the holiday season has been as smooth as it can be, in these different times! We got some snow here around Boston this past weekend, and it definitely got me “in the spirit”.

For me, part of being “in the spirit”, includes my desire to do good anywhere I can, for anyone I can. Financially being pretty strained definitely limits the ways that I can do good; so does covid, so does my disability. We all have a million reasons as to why we can’t help, and a lot of them are extremely valid. That’s ok. Doing good doesn’t have to cost us a thing. It’s letting someone know their hair looks good, or they’re rocking an outfit. Little acts of kindness are available for us to dispense into the world as we go. Here are all of the ways that I have been helped so far by all of YOUR not-so-little acts of kindness:

I now have enough money to get on the road with a driving instructor. I am waiting on the last bit of paperwork from my PCP, and will then head to the RMV to request a hearing so that I can get my permit. (I need a hearing, as my license was medically suspended, and they need to make sure I didn’t have any accidents due to my disability before it was suspended-i didn’t…as it happened over night, and I haven’t gotten back behind the wheel since).

Also, I have some donations left over once that is paid for, to help start paying off some debt, as for the moment, I can afford my health insurance.

A LOT of good has happened here. Between the FB fundraiser that raised almost $800 and the current total here, the total amount of good that is happening is overwhelming.

There’s a way to go yet…but when I really look at the donations, and the engagement with my community, complete strangers, and childhood friends that I haven’t heard from in years, I’m immediately lifted from my self-doubt.

So while we prepare for the holidays, a new year, and that giving desire that tends to hit at this time of year, I need again to say thank you. I don’t know how I’m going to give back yet. I’m not sure I can ever repay such kindness. I can keep working towards my goals of driving, working, getting rid of medical debt, making music, and living a meaningful life that hopefully inspires people to do good.

Frost’s poem comes to mind as I look to an amazing future that I know I’m meant to have. I don’t know exactly what I can promise at the moment, but I know whatever I end up doing will be for the greater good. I’ve seen too much to go back to my former status quo.

So, thank you for being here.
I hope you find your “giving spirit”, and that it guides you to whatever you’re most passionate about.

“The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.”
R.Frost 1923
✌️

December 3, 2020

Hi all! Here is a link to a few songs I did on the Socially Distant Fest, FB page, in thanks of all the wonderful donations we were able to raise for Help Hope Live yesterday. I hope you take a second to check it out!!

Thank you for all of your love and continued support. I’m blown away.

✌️www.facebook.com

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 not have anything to give back 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

November 14, 2020

Hi all,
If you’re here, it’s probably because you know I finally posted my campaign. I currently don’t have adequate words, to express how humbled, and gracious I am for the mind-blowing amount of support I have received thus far. I have heard from childhood friends, family, strangers, people I had no idea were following my story on FB, all took this opportunity to show me how much they care. People have shared my campaign, even if they can’t contribute, they’ve shared it in hopes that others can. I truly cannot express my gratitude. I won’t ever be able to.

What I can do, is continue to move forward. I can promise that every move I make, will be one that brings me closer to being the best person I can be. I can promise that I will ALWAYS be an advocate for those with disabilities, and that I will work to make things better….somehow. That’s my goal. I want to make the world as equally navigable for everyone, as it was for me before I became disabled.

I don’t know how to do all of the things that I want to do, to help that goal come to life. What I do know, two days after launching my campaign, is that I am closer to making that happen, than I have ever been. Human kindness is overflowing. And humbling.

Thank you. From the bottom of my heart, thank you.

✌️

November 5, 2020

Hi all,
This is my initial update, as my page just went “live”. I wanted to document the first time I wrote here, as I’m not even sure yet if I will actually go live with this fundraising effort. I’m extremely uncomfortable with the idea that I’m asking for money. I’d honestly never even really considered it (even after I ended up paying out of pocket for all of the mayo clinic testing/visits). It wasn’t until the instructor with whom I’ll be working on my road hours to get my driver’s license, mentioned helphopelive as a way to possibly find some funds for the at least 3k it will cost to get me back on the road (sans actual car), that I change my mind.

I wasn’t really comfortable with becoming disabled overnight either. But..here we are. I miss PLENTY from my “old” life. But, I don’t have any regrets as to how my LIFE being dramatically changed, led to ME becoming dramatically changed. I’ve learned lessons I needed to learn. I may never have learned them, had my life not gone the way it has. I’ve stumbled along the way, hell, I’ve downright fallen flat on my face (figuratively, and literally), but…the getting back up part…I’ll never regret having learned how strong I am. Ever.
I’m betting I won’t have regrets about asking for help, either.

IT still remains to be when I will actually share this effort with other humans….but I’m pretty sure, that when I do finally allow myself to share my goals with others, everything is going to be just fine.

“You miss 100% if the shots you don’t take”. (what can I say….I’m a Boston girl)

Thanks to being here.