Dear anyone and everyone, but most of all, dear you.
My name is Caz. You may or may not remember me as Caz Killjoy, co-founder of the now defunct disability and sexuality advocacy and education organization the Disability and Sexuality Access Network (later known as Pleasurable).
As you may know, I have a long, complicated medical history stemming from a late-in-life Ehlers-Danlos diagnosis ↗ (link to NSFW podcast epsiode). Ehlers-Danlos manifests differently in everyone who has it. My particular flavor includes multiple comorbidities, some of which are rare, and a few are very rare. Some are not covered by health insurance, let alone Medicaid. Some are not recognized by Social Security as “listed impairments,” so while Social Security may acknowledge they are severe, they don’t fit any of their Blue Book listings of recognized impairments ↗ – which means that I fought Social Security for assistance for seven years with no hope of ever winning my case. During this time, my health has become increasingly impaired – I’m now essentially home-bound.
As the Washington Post reported in December of 2022, Social Security is still making their decisions based on jobs from 1977 ↗ – so Social Security keeps telling me I can do jobs that no longer exist. Additionally, Social Security haven’t updated their evaluation of neurological disorders since 2016 ↗, while one of my primary impairing diagnoses ↗ wasn’t fully medically recognized until 2021 – though it still is not recognized by the ICD or World Health Organization.
Therefore, due to the combination of the rarity of many of my diagnoses (and therefore most medical providers not realizing I had these conditions, leaving them untreated and thus worsening); the lack of medical providers familiar with my rare diagnoses who accept Medicaid, the difficulty of finding funding to pay for non-Medicaid specialists ($500+ per visit); the wait lists to access these specialist providers for new patients; and the terrible state of healthcare (including provider attrition, under-staffing, wait lists, burnout, etcetera), as well as the heinous cost of staying near the hospital where I will be having two neurosurgeries (I live over an hour away and it’s advised that I stay in town)… I’m a wreck.
Click here to read in-depth about how the complexities of state-enforced poverty and lack of access to care for rare and complex medical conditions personally financially effects me.
These days, I’m mostly home-bound and practically bed-bound, often having multiple panic attacks per day. I’m on high levels of pain medication and benzodiazepines around the clock. My “functionality” is very low, yet I have to write this because it’s about to get worse.
In September of 2021, a neurosurgeon implanted a lumboperitoneal shunt ↗ into me to fix the intracranial hypertension ↗ and cerebrospinal fluid leak ↗ I had been experiencing for years. While the shunt improved those symptoms, two weeks after the implant was placed I was hospitalized for pain in my abdomen, where the shunt’s catheter is located. The hospital had me on dilaudid (synthetic morphine) every three hours for over a month; it did not touch the pain. My neurosurgeon was unfazed; she wanted to relocate the catheter to the other side of my abdomen without trying to find out what was causing the pain. I declined; why move the catheter without knowing the cause, as without knowing the cause the pain may continue in the new location? My neurosurgeon then moved out of the country and left me without feasible continuity of care (she suggested colleagues who stopped accepting or never accepted insurance). There are very few neurosurgeons who treat these conditions and even fewer who take Medicaid. The abdominal pain from the shunt has yet to abate.
After sending my records to a neurosurgeon who had previously declined to see me, I was given an appointment in August of 2022. After multiple CT scans and MRIs, two lumbar punctures ↗, and a cisternogram ↗, the neurosurgeon has determined that something is obstructing the flow within my shunt, thus causing my shunt to malfunction. The only way to correct it is surgically, by removing the whole thing (May 3rd)
and putting in what my neurosurgeon feels is the shunt I should have had in the first place, a VP shunt (May 24th). Update June 6, 2023: After undergoing intracranial hypertension monitoring, it was determined that I currently do not need the VP shunt!
I am up shit’s creek.
My surgery in September of 2021 resulted in my partner needing to take a full month off work to care for me around the clock. It took several months before I was able to semi-function. It might take as long or longer this time. This time around, my shunt has to be taken out,
then a follow-up surgery will need to happen to implant the correct type of shunt, a ventriculoperitoneal shunt ↗ which will drain the excess cerebrospinal fluid directly out of my skull. Update June 6, 2023: After undergoing intracranial hypertension monitoring, it was determined that I currently do not need the VP shunt!
In addition, I was diagnosed with another condition of the spine: lumbosacral annular tear-induced sacral radiculopathy from multiple tears/fissures, which are contributing to my urogenital conditions (persistent genital arousal disorder ↗, pudendal neuralgia ↗, interstitial cystitis ↗, vulvodynia ↗, etcetera). I should be undergoing multiple procedures on my spine in an attempt at symptom relief, but ultimately I need minimally invasive lumbar endoscopic spine surgery. However, no spinal surgeon who treats my constellation of conditions accepts insurance, let alone Medicaid. To receive care, I am looking at out-of-pocket expenses upward of $100,000 for surgery, travel, lodging, and follow-up visits. As this is not feasible, I will have to continue to live with the various symptoms, which, all told, cause me to have suicidal ideation. But I am determined to find a way to live through this.
There is no way of knowing how long recovery from all of this may take (a conservative guesstimate will have me out of commission at least through the end of 2023), which is why in November 2022 I retired from sex ed, social media, and essentially all aspects of my non-medical life. My body is failing and so is my mental health. (Persistent genital arousal disorder, in particular, has a high rate of suicidality, and malfunctioning shunts and the wrong kind of shunt can cause hemorrhage, subdural hematoma, seizures, blindness, and death.)
The personal is political
There are many published accounts of the healthcare system failing us, though I don’t believe these stories are inspiring systemic change. However, if or when people can identify with a story in a way that makes them feel less alone – and believe me when I say that like many, I feel very, very alone these days ↗ – I deeply believe that feeling less isolated and alienated is beneficial to both the individual self and society as a whole ↗. I know I am not alone, just isolated, alienated, traumatized… and angry.
I have told friends who are sex educators about my persistent genital arousal disorder diagnosis and they have laughed. This is not okay! It is vital that the worlds of sex education and sexual wellness become better informed about sexual medicine.
Therefore, as I’m able, I really want to be contributing to conversations about healthcare inequality, sexual medicine and mental healthcare, and survival. Because I deeply, fervently want to survive. I’m asking that you please help me to do so.
I know that times are particularly hard right now for just about everyone, and that for many, they are getting worse with no relief in sight. I know that I have been absent from your lives for many months (if not longer) and that it’s hard to give a damn about someone who hasn’t been on your radar for a long time. But I’m sincerely asking: please give a damn and please act.
I desperately want to live and I passionately want to bring sexual medicine to the world of sex education while starting a foundation that will assist patients with accessing sexual medicine healthcare that they cannot afford.
This work will save lives. Please help save mine so that I can get back to this work.
If you live near me, I desperately need someone(s) to stop by my place several times per week or to stay at my place May 2nd-May 9th (roughly) and May 23-June 6 (roughly). This is to take care of my many plants, make sure there are no maintenance issues that need emergency servicing, and to bring in mail that doesn’t get stopped by USPS’s mail hold (which is usually half the mail). Anyone interested will already know me and should text me. My apartment building is a 10 minute bus ride from the nearest metro station (red line), has free parking in a secure garage, paid laundry in the basement, and elevators. My apartment is air conditioned, smoke-free, and pet-free. You’ll be able to harvest and eat all the salad greens, herbs, tomatoes, peppers, and cucumbers you want (they grow indoors in my hydroponic garden; you won’t have to go outside to care for them).Done!
Buy me a gift card to Souper Girl ↗. The hotel room has a kitchen so we’ll be bringing in groceries. Souper Girl is ideal because their soups are easy to digest post-abdominal surgery and are also very low in sodium compared to most other soups. And they save time and effort from Leighton having to prepare complicated food. Text me or email me if you need my address to send it to me.Done!
Buy me gift cards for food (Giant Food ↗, Whole Foods ↗, Door Dash), transportation (Lyft), and other needs (Instacart, Amazon). Text me or email me if you need my address to send it to me, or find some of them on my Amazon wishlist ↗.Done! Buy one of the few things I’ll need that I don’t yet have for my hospital stays and surgery recovery via my Amazon wishlist ↗.Done!
- Join my Meal Train ↗ to volunteer to provide rides, meals, run errands, or “babysit” me (all once we’re back home) so that Leighton gets a much-needed break. Joining Meal Train also gets my updates (only a few per week at most) sent to your email address.
Send donations directly to my partner, Leighton, via check, PayPal, or Venmo, to bypass Meal Train’s almost 8% fee charges. You can do that by:
1) PayPal ↗ or PayPal user @leightonlc
2) Venmo ↗ or Venmo user @leightonlc
The goal is to raise $7,000 to cover hotel costs to stay near the hospital, specialty food, and transportation as needed to and from the hotel and hospital. As of 6:15 am EDT April 17th, 2023, we have raised $4,123.02 (this amount is not reflected on the Meal Train total as many of the donations have not come through Meal Train).Done!
- Share my story to raise awareness with whomever in your circles you feel might benefit:
1) mutual friends;
2) folks working in sexual medicine or education;
3) fellow rare disease patients;
4) philanthropists interested in the establishment of a foundation to assist sexual medicine patients;
5) kind hearts who can spare a few dollars to help me survive the next several months (those few dollars add up);
6) or even members of the press (including social media influencers, video creators, and podcasters) who would be interested in discussing the confluence of poverty and sexual medicine, sexual medicine as it relates to sex education, patient advocacy, or whatever else.
Anyone who would like to learn more can contact me. (Please understand that replies may take weeks due to time spent in recovery and pain management.)
- Join my mailing list ↗ to be notified if or when I am able to return to work (aiming for 2024!).
Thank you for reading, supporting me over the years, and continuing to support me during this Kafkaesque process!