for Sarah Bosse’s medical treatment
at Afton Ridge & Concord Mills locations (Charlotte, NC)
Saturday, April 8, 6-9pm
Please tell the cashier you’re participating in the fundraiser for
Crossway Community Church (not Sarah) and Sweet Frog will give 20% of the proceeds towards my medical care.
Fundraising is just not my cup of tea. I feel like I’m begging. Yet I also hate being stuck, being unable to work a job or even enjoy using the gifts that God has given me with which I can bless others. To do any of these things, I have to be healthier than I am now. Enter Sweet Frog Fundraiser!
In case this is your first time hearing about me, this is a brief list and explanation that Gina (my full-time caregiver and friend) wrote a few days ago, to help spread the word.
Sarah and I are pursuing help for medical testing and treatment for her which is not covered by Medicaid/Medicare.
Her challenges are complicated, covering many bodily systems, so standard medicine has not been able to address what requires a holistic approach. To give you an idea of some of the difficulties we are trying to address: heat intolerance due in part to anhydrosis (she doesn’t sweat), Complex Regional Pain Syndrome (CRPS, a chronic pain condition provoked by the trauma of double leg reconstructive surgeries performed years ago), Migraines, light and sound sensitivity, Dysautonomia (dysregulation in the autonomic nervous system resulting in constant elevated heart rate…), swallowing difficulty due to neurological deficits (making food choices extremely difficult), Histamine Intolerance (Genetics show an inherited deficiency in metabolizing histamine which creates pain, dysfunction, and more food restrictions), and the list goes on.
We are having some success with a few local practitioners, while some are and will be requiring travel, at least for a time. Alongside our wellness efforts, Sarah is continuing to pursue a career change and required schooling so she might work again, health permitting. Financial resources will help speed the process of pursuing treatment. If you have questions, I’m glad to answer. — Gina Potter
For those who don’t know my story, you can of course peruse my blog here. In short, I have been through every insurance-covered procedure for the medical conditions that I have. Very few of those treatments have been successful (mainly my Spinal Cord Stimulator implant and some biofeedback), and while I’m grateful for those that have helped, I still have a very long ways to go before I can participate more fully in life and in caring for myself more independently. As I’ve reached the end of what traditional Western medicine can do for me, and what my insurance would cover, I’ve had to reach into my pockets and give almost everything I have towards my own healthcare costs. For example, two weeks ago I used the remainder of my Pell Grant (FAFSA) money for school to pay for my bloodwork and tests (over $1,100) that Medicare and Medicaid would not cover. I had tried to buy my college books as cheaply as possible so that I could use the refund to get medical care. (I wanted to build a computer with the money instead, but I did the “adult” thing.)
Meanwhile, Gina is getting paid to be my full-time caregiver. I live with her now, in her house, with her family (since March of 2015, when I left all of my friends in Raleigh because I couldn’t safely live alone anymore). Under the Community Alternatives Program (CAP), Medicaid is willing to pay the expense for full-time care because otherwise I qualify for nursing home level of care in just that – a nursing home. (It’s cheaper for them to pay Gina to care for me than it is for them to pay for me to be institutionalized.)
Gina not only takes care of any physical need I have that I can’t manage myself, but in an act of amazing Christian love, she and her husband have chosen to use most of her pay to support the therapies and treatments that I need. Everyone is giving over 100% in this household.
The next steps in my treatment are held up, now, primarily by the need for more money than we can put together with Gina’s income and my $750 / month SSDI checks. So I AM asking for your help, if you’re able.