There’s nothing typical or graceful about reaching out to so many people in such an intimate way, but with such seemingly indelicate intent, especially considering that you probably haven't seen Rose in a while: no matter if you’re a friend, family member, or our neighbor in the apartment downstairs. We haven’t been getting out much (but rest assured we still think of you fondly and often). We’ve simply reached a point where there is more at stake than our social lives.

In a nutshell? Rose is in pain. She is in pain every day, and she is in pain all day; she’s actually in so much pain, that it was recently diagnosed: Complex Regional Pain Syndrome (CRPS). CRPS is incurable, but in most cases can be managed, made livable. The key is identifying and treating as many of the individually diagnosable components of the pain as possible, effectively calming the sympathetic nervous system and thus its learned tendency to be hyper-reactive.

At the core of Rose’s CRPS is a severe case of Temporomandibular Joint Disorder (TMJD). Despite six years of treatment in the U.K. and access to specialized healthcare in the U.S. over the past four years, her condition has continued to worsen, and more rapidly than ever over the past year.

The fat grafts that were injected into her jaw joints last summer as part of a discectomy procedure have dissolved, and there are fragments of cartilage still lodged deep in the joints; they're now bone-on-bone, with no padding to prevent the mandible from grinding in its socket. The bones are eroding, and the effects of their malfunction are radiating throughout Rose's body. What little energy she has gets channeled to enduring the effects of synovitis, fibromyalgia, sciatica, and migraines. Traditional approaches to pain management have not been able to keep up; and, as of earlier this week, her left TMJ is locked closed.

Leveling out and reducing Rose’s pain will require a number of things.

She needs a stint of cervical spine chiropractic treatment to address an acute rotation of her first vertebra. Its misalignment generates strain in the muscles of her upper body and is responsible for a sizable portion of her headache (we quit using the plural long ago; now there is just the one, unending ‘ache’). It also wreaks havoc on the sympathetic nerves that run along the spine.

In terms of immediate relief, Rose will benefit from ketamine therapy, either in a clinic or home-based palliative care setting. The deterioration of her condition and increase in pain have been intensified over time by higher and higher doses of opioid painkillers, and ketamine is an alternative favored by physicians faced with opioid-immune, chronic pain patients. It's classified as an 'experimental treatment', though, and so will not be covered by insurance.

As a sort of maintenance measure, Rose will need to see an 'ortho-dentist' specializing in TMJD treatment, to manage a bite splint. She committed to this course of treatment in January of 2016 only to be told a few weeks later that her jaw is “floating” in decaying joint space, and so cannot be stabilized with a splint. Her dentist has since been supportive and encouraging; she has not, however, offered to refund our money or annul our obligation to continue payments. Our desperation to pursue this treatment track turns out to have been misguided—as has our understanding of our insurance provider’s willingness to help with the cost.

All of these measures are really just stopgaps to help Rose prepare for (and battle for 60% insurance contribution toward) a TMJ arthroplasty that differs significantly from any procedure she has had thus far.

Essentially, Rose's second chance at life will be defined by the outcome, so we’re fortunate that the world’s foremost expert, whose work is renowned for turning patients’ lives around for the better, practices out of Saint Petersburg, Florida (only an eight-hour drive away from her life in Atlanta, Georgia).

THE ‘WHY’:

Most of you knew Rose before her daily life was defined by bed rest, pain medication, doctor’s appointments, and a diet of baby food. You wouldn’t recognize the girl who has exhausted the maximum duration of Medical Leave allowed by her PhD program. Her studies have gradually become replaced by aspirations like being able to move all the joints required to get out of bed (which is most of them!) and climbing the stairs to our apartment. Leaving the house for any reason has become a frightening prospect, and the rare occasions that it happens require multiple days of recuperation.

The idea of crowdfunding a person's health is hard to comprehend...especially when that person is your soulmate. No conversion rate can establish the dollar amount of how valuable a life is. Four years ago, Rose and I met in graduate school and found one another to be the most beautiful of human beings. We married in May of 2015, and the rest is history...but it’s a history that we have to fight to extend.

Rose is wilting, and her physical state—pain aside—will only deteriorate. As odd and alarming as it is to say of a woman in her twenties: we have to take these strides while her body is still salvageable.

Please consider helping to make this possible. The financial demand is intimidating, but our only option is to hope its not impossible. Treatments for this condition are very alien to the NHS in England, and all other, more fiscal and conservative approaches have been exhausted. Any contribution would be appreciated, even if it just means taking a few minutes to share our campaign in a post or an email.

Thank you all so, so much.