Hi my name is Jozy, I am a 27 year old non-binary musician and artist who is struggling with numerous compounding health issues, injuries, and recovery from a major surgery and complications. 

I had a total hysterectomy 8 weeks ago to remove my uterus, Fallopian tubes, and cervix. They found a lot of endometrial tissue inside me during the surgery and removed as much of it as possible. Post surgery they found high risk pre-cancerous cells on my cervix so its a relief to have that removed.

However post surgery I developed an abscess and infection (Ecoli) above my vaginal cuff (internally), this led to two and a half weeks of antibiotics, an extra hospital stay, multiple emergency room visits and scans, and a multiple week delayed healing time. As well as significant nervous system distress, severe stress, and psychological suffering. This has extended my recovery time quite a bit and I am still experiencing pain and increased fatigue. 

I have severe chronic pain and joint instability caused by Hypermobile Ehlers Danlos Syndrome (hEDS) which was exacerbated by a robust injury/chronic strain history. I also have a POTS (postural orthostatic intolerance syndrome) diagnosis, and Endometriosis, alongside my PTSD, ADHD, suspected autism, and ARFID. My hEDS and POTS were pre-existing but severely exacerbated after multiple Covid-19 infections.

I suffer from chronic subluxations (partial dislocations), chronic bursitis and tendonitis in most of my major joints, difficulty exercising without re-injury/strain, chronic fatigue, nausea, temperature dysregulation, orthostatic intolerance, amongst a litany other symptoms (too many to list). I currently use a cane to help with mobility and fatigue.

I am asking for funding for:

-rehabilitation post hysterectomy (pelvic floor physio, rebuilding my energy baseline).

-hEDS/previous injury rehabilitation to bring me back to a baseline of less pain and repetitive injury (osteopathy, kinesiology, personal training to strengthen muscles, massage therapy to relieve significant muscle tension, and physiotherapy).

-non-msp covered pain relief procedures from ChangePain and other providers.

-disability aids/braces to help with daily tasks/joint support/pain relief.

-counselling/therapy to ease my psychological distress and PTSD symptoms.

-transportation expenses to and from medical appointments, monthly supplemental support, support with living expenses.

 

 

I have not been able to work for a while, do many of the things I love (hikes, attend shows/community events, performing, playing instruments, swimming, etc), exercise without hurting myself, do basic care tasks for myself without worsening symptoms (grocery shopping, house cleaning tasks, gardening). I am significantly more disabled than I have ever been before and it is deeply frustrating, painful, isolating, and scary. 

I am currently on PWD (persons with disability funding) to help support myself financially, but while I am grateful for that support it is not nearly enough to cover my rehabilitation expenses, disability accommodations, and non-msp covered therapeutic medical procedures. 

I need more support, and I need help to be able to cover the expenses of rehabilitation and pain management moving forward.

For most of my life I have experienced chronic pain, I didn’t realize that it wasn’t normal, I was gaslit by medical professionals telling me it wasn’t serious or would simply resolve with rest or exercise (it hasn’t). 

I was constantly hyperextending my joints, pushing myself into burnout chronically, lifting and exerting more than I was capable of to "keep up" at work, pushing myself far beyond all my limitations my body/nervous system was screaming about simply to prove I was "normal" or not disabled. This was internalized ableism exacerbated by medical gaslighting, and has put me into a far worse state of disability.

Rehabilitating myself out of disability isn’t an achievable goal, I will always be disabled, but my quality of life can absolutely be improved and access to more financial support is essential in getting there. My current pain level is debilitating and unsustainable. 

With more financial support, and the help of a broader medical team, I’ll be able to do everything I can to help myself heal and improve my baseline of functioning and ability, and hopefully lessen my daily experience of pain.