Hi, my name is Molly and in 2024, I was diagnosed with a rare autoimmune disease called GPA Vasculitis with renal involvement. It attacks my veins and capillaries, causing a TIA (or mini-stroke), and multiple hospitalizations for kidney infection. I take low dose chemotherapy called methotrexate, which suppresses my immune system to the point where it is too dangerous to leave my home and risk exposure to sicknesses my body can no longer fight off. I suffer from debilitating chronic pain that leaves me bed-ridden most days, and I can’t take care of even small household tasks. Even showering and basic hygiene is difficult for me some days. I couldn’t get through this without my partner Dave.

My illness effectively ended my 15-year career in medical billing and coding, so I filed for disability and am currently waiting for the results of my final SSDI hearing. I have been praying for- no, RELYING on- a favorable outcome for this hearing. We simply cannot continue to live off only one income. 

I depend on Dave, my partner and primary caregiver, for nearly everything, which has been quite the adjustment for a bullheaded, fiercely independent person such as myself! As you know, it’s become increasingly difficult to cover even basic living expenses for a majority of the population. But it’s particularly challenging for those of us who suffer from chronic illness, as well as our loved ones- the few who sacrifice so much of their own resources, time and energy to support us in our worst moments.

Until recently, Dave and I both relied on one vehicle which got repossessed a few months ago. This resulted in the biweekly garnishment of roughly 1/3 of each of his paychecks. I don’t know how we’ve even managed to keep our home honestly, but God ALWAYS provides. He will send the right person, the right resources, the SOLUTION, usually at the 11th hour when you’ve reached the end of yourself. just as you begin to surrender and unfurl your white flag. I’ve had to endure far too many of these “lessons in trust,” but as I mentioned before, I can be stubborn 😂 

Being without a car has limited my ability to schedule and show up to critical medical appointments, one of which has taken over 8 months to establish. My condition has deteriorated rapidly while I search for any and every specialist in the state who might accept a new patient with my insurance. I even tried to get a consultation with a provider at a Vasculitis center OUT-of-state, considering that proper treatment is neither accessible nor available in OK. But even IF my insurance approved payment for an initial appointment (which it didn’t), I still wouldn’t be able to get there. 

Without a vehicle, Dave can’t stay or even visit with me when I’m in the hospital. I’ve encouraged him to find caregiver support groups, so he can connect with others who understand what this is like. I tell him everyday how his presence is cherished and irreplaceable, but I want him to feel supported and understood by others, too. A car would give him the freedom and much-needed respite to regroup and recover (yes, even from ME 😢😆)

Finally, our landlord recently sold our building and we can’t afford to move anytime soon, let alone cover the deposit/elevated rental costs at a new property. 

I am humbly requesting any assistance you might offer to help us navigate this challenging season in our lives. We need secure, reliable transportation to help me get to and from medical appointments, a security deposit/first month’s rent for a new home and any additional funding to offset related moving costs. And of course prayers are ALWAYS encouraged and appreciated, as we anticipate good news on the SSDI front.

But above all, I want to express my deepest gratitude for the countless blessings I DO have. Not everyone has a safe place to sleep, a roof over their head, enough food, or amazing people to share it with…People whose love and support keep me pushing forward in hope, out of the shadow and into the light. 

GPA Vasculitis has upended my life in every way possible, and I used to believe it was the worst thing that would ever happen to me. But in the last 18 months, I’ve discovered it’s also the best. Without the career I’d grown to resent and all the time I’d thrown at it, I had the privilege of working with other patients, as well as leaders of the Vasculitis Foundation, Links2Equity and RDDC (Rare Disease Diversity Coalition). Together we published a paper and companion webinar to advocate for those of us suffering from this debilitating and rare disease, offering avenues for connection, support and self-advocacy (please see our paper here: RDDC Vasculitis Patient Recommendations).

I am a firm believer in the power of community, which is also something I’m trying to build through my blog/burgeoning podcast on Substack, called “The Irreparable Collective.” It has seen minimal growth due to my health issues, but it’s been a great way for me to work through my own thoughts and feelings about my disease. Ultimately, I hope my writing offers people a safe space to rediscover their voice and a new kind of power- one rooted in vulnerability, authenticity and connection. (Here’s a link to my blog, please feel free to share if it speaks to you:

Irreparable Collective).

My point is this: I’ve met so many incredible people, brimming with limitless courage and enthusiasm, who’ve shown me how to enjoy life, even in sickness. They’ve offered me numerous opportunities to be of service and pass on the experience, strength and hope I’ve appreciated, post-diagnosis. My heart is FULL with gratitude, even when pain leaves me bedridden. In this past year, I’ve experienced more moments of pure joy, love, and peace than I EVER have throughout my lifetime. And I can honestly say, I wouldn’t trade it for the world.

💕💗🩷 Molly