May 22, 2021

Hi all!
With the 5k just about a week behind us, I have had a lot of time to process how I got “here”. As you might imagine, that line of thought sends me down a wormhole of memories, all the way back to waking up that first morning, paralyzed. It’s kind of like the boat scene in the original “Willy Wonka and the Chocolate Factory”, that’s somewhat scary, and Gene Wilder is singing the creepy melody, you with me? My montage is of tests, PT, more tests, drug reactions, not returning to work, not being able to see my niece’s Christmas show because I couldn’t do stairs, missing my nephew’s cross country meets….it’s a pretty scary ride traveling down the path that brings me to having to fundraise to afford such basic things as healthcare.
HOWEVER, as tired as I’ve been since the 5k, I still did it. That flip of the switch, leads me down a much more amazing path full of badass victories, a bounty of lessons I needed to learn, rekindled friendships, unconditional love and support, and so much more amazingness than the other path. It serves me with an immensely more positive impact, than does the other path.
We all choose which path we want to go down at any given point of any given day; do you use negative or positive history to inform your decisions/actions/feelings? I can’t pinpoint exactly when I stopped choosing the bad path to go down. It’s been a long process. I lost A LOT when I got sick and became disabled. I had a lot of grieving to do. I couldn’t think of doing a .5k, learning how to work out, or the future at all….in my perception at that time, there was no future. I’d lost everything, the rest would be me just….breathing, really. I can’t call it living, what I was doing. Surviving, is pushing it too. I was breathing…barely. But again, bad path. I had to go through the “barely breathing” part of grief, in order to get where I am today. And, yeah, sitting in sweats tucked into hospital socks isn’t exactly glamorous, but, after changing my bed, a workout, a shower without the shower chair, and an SVU marathon on…it’s a hell of a lot better than barely breathing.
So, thank you for being here with me. Your support has an impact on me, beyond my writing capabilities. Thank you for donating and doing the 5k with me. Thank you for making it easier to breathe, and for making the awesome path that much easier to choose each and every day.

I hope you can see the video below of the .5k I did. If not, come join my group “Effecting Change for the Better” on Fb! Whatever you do….choose the path that reminds you of your badassery, over your missteps, every single time.
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www.facebook.com

April 27, 2021

My dad began his career as a door-to-door insurance salesman. He’d sit in his office, making cold calls, and for every hundred calls he’d make, he’d get very few in person appointments. He recalls many of his early sales calls and how horrible they were, including hearing one of his “clients” and their family, laughing behind the door as he knocked, hoping to come in and close a sale.

It seemed only fitting that my dad would be the one behind the wheel as I cold-called car dealerships, hoping to make that elusive “sale” today. I put together packets including letters from Help Hope Live stating that we are working together, their IRS non-profit status, a driving evaluation and equipment reccomendations from my driving instructor, and a personalized card I’ve had made with my campaign info on it. Putting together papers is easy. Getting to the meat of my ask, succinctly, with a flare of humor, exuding tonnes of humility, while attempting to also feign that I actually have the confidence to do this….well, it felt damn near impossible.

We went to two places today. The first place, once told what I was there for, the manager sent the salesman back to me and told me to leave my papers. I didn’t feel like this was a good idea. And although I KNOW it’s a 1/10000000 chance I’d even get help or a car, you just never know. So, we went to another place. As I barreled through the heavy pull door, a giant gust of wind came and took my packet with it, and I caught the eye of a salesman. He tried to help me, but I’d recovered by the time he got to me. We were laughing, and his manager came right over when he heard what I was there about. He asked questions about my disease, my life now, and seemed genuinely interested. I left there feeling seen. I probably won’t get a car, but they saw me.

We only went to those two places today, as I have one other piece of material to add to my packet. I’m terrified to go back out. It’s insane, isn’t it? Me, going to a dealership, and asking for a car because I became disabled? I mean, that’s insane. I’m aware. However, even begining my fundraiser seemed (and still seems) insane. Every single time I post about it, I cringe, then imagine how my dad felt hearing his “client” laughing at him from behind the door. It’s a valid comparison; he was trying to secure his (and his family’s) future, and so am I.

So, there are two takeaways from today’s experience. The first is that I hate fundraising for myself. I feel I’ve made that clear, but just to clarify, it feels AWFUL to HAVE to ask for help. I know I’m doing the right thing, but it doesn’t make me feel GOOD about doing it. The second, and *hopefully* more important takeaway from today, is that being seen and feeling like someone really sees you, feels amazing. We all want that. We all need that. It helps us grow as people when we know that others see us…..especially when they GENTLY point out the not-so-good things they see.

I’m not looking forward to going out and doing more cold-calling. I am looking forward to spending more time with “the dad”, channeling his courage when I do, and continuing to do my best to see people for who they are, and pray that others (like all of you have) return the kindness.

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April 21, 2021

Hey guys!

Just wanted to drop a quick note that I have created a team to participate in a virtual 5k, on Sunday, May 16th. I am committing to doing a .5k of my own, and I’d love it if you joined my team, “We’ve Got This”, help me continue to get closer to my goals, and get a stellar t-shirt! Join us here, or register on the home page fory team!! raceroster.com
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April 16, 2021

Hi all! Thought I added this on April 1st, but I guess I didn’t update it! Here is how the cupcake campaign went!!

Happy April, gang! The cupcake sale officially closed out yesterday. Thanks to all of you, it raised almost $400, and I put over 150 cupcakes into tummies! (Not personally…I let people feed themselves.) I am so grateful for all of the orders, and continued support. This has been an amazing ride so far!

I am looking forward to a whoopie pie sale for graduation season (filling colored to school colors), fourth of July…. hopefully for most of the summer. And BONUS: whoopie pies can be shipped!

So, thank you so much for keeping me motivated, for moving me closer to reaching my goals, and most of all for being here. You mean more to me than you could ever know. ✌️

March 19, 2021

Hi all!

There is so much to catch you up on, it’s been a wonderful whirlwind of a week or so!! First, the cupcake sale has been wildly successful, if I do say so myself. I never imagined I’d have even a couple of orders, let alone three dozen cupcakes going out the day before and on St Patrick’s day! It has been such a rewarding experience. Not only does it feel great to have people say they liked my cupcakes, but meeting the people as we did a safe pickup was so great. It was wonderful to put names to the faces of people who, out of the kindness of their hearts (and a desire for to-die-for cream cheese frosting), ordered to support my cause. It was amazing.

Secondly, I DROVE YESTERDAY!!! I had received my learner’s permit in the mail, and my driving instructor and I had made appointments starting March 31st. She sent me a text Wednesday night, asking me if I could do the next day. YES. YES. YES. Anything else on the schedule (there wasn’t anything) can wait. I’m getting behind the wheel of a car for the first time in three and a half years. YES!!!

My whole body is still buzzing from the experience, the thrill, the glimpse of independence. I’m exhausted from remembering how not all that long ago, I did not have any hope that a day like yesterday would ever happen.

So man….what a week. Dozens of cupcakes for friends and supporters all around, my first driving lesson, and….my 43 birthday. I could do without the advanced age of the latter, but, getting behind the wheel on the day of my birth, seemed incredibly fitting.

Thanks for everything tribe. Your support means the absolute world to me.

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March 7, 2021

Hi all!

I’m about a week and a half into my cupcake fundraiser, and I am thrilled with how it’s going so far! I have already gotten and fulfilled several dozen orders! I have also posted fliers around my apartment complex with the help of management, and some local businesses, with the persuasion of some cupcakes! It feels so good to give back, even in this small way. It feels good to challenge my body even on hard days, and pull up a stool to the counter if need be to get the frosting finished. It feels great.

I am looking forward to getting more cupcakes into tummies as St. Patrick’s day approaches, and my recipe continues to improve! I look forward to continuing to find ways to give back to all of those who support me.

In other big news this week, I passed my written permit exam!! I am waiting on the physical permit in the mail, and then, due to a private donor, I can work with a driving school. I am beyond thrilled to begin this part of my “comeback”; and yeah…that’s exactly what I’m calling it!!

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February 25, 2021

Hi all!
I’ve just shared my first post about the St. Patrick’s Day Cupcake fundraiser on social media. I always get so nervous when beginning a new push for fundraising. I worry that I’m asking to much, I worry that it will not be well received, I worry that I’ll get to many orders and my cupcakes maybe aren’t really that good….I get nervous!!

This time however, I have a little history sharing a fundraiser I’m nervous about, crossing my fingers, and being blown away by the beautiful outpouring of human kindness that followed. So, as nervous as I am tonight about the launch, and as tightly crossed as my fingers may be right now, I am cautiously optimistic that I will be up to my elbows in batter and frosting before too long!!!
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January 28, 2021

Hi all!
I just this second, wrote the last “thank you card” on a very long list, that unbelievably keeps growing, from the very first donation, to the most recent. Each card I wrote, made me feel like the grinch, as his heart outgrew his chest. The gratitude clumsily fell through each card, as I worked to express this new feeling I have. The donations, the private messages, the guest book signatures and messages of support, have all given me a an emotion I’ve never felt before. It’s gratitude, yes, but it’s so much more than that. It’s encouragement, and support, understanding and desire to help. It makes me to want to do right by all of you, and do the absolute best to become who and what I am supposed to be. It gives me strength. It gives me humility, and vulnerability. It revitalizes my desire to live the fullest life that I am capable of. It gives me joy. It gives me hope.

I know I’ve said it before, but PLEASE know how deeply and truly I mean, that “thank you”, isn’t even the tip of the iceberg.

Thank you all so very much, nonetheless.
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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.
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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
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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.

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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.

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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.