Help New get relief from chronic pain & illness

Thank you for visiting this page. I made it to help me stay on top of treatment, medication, and supplements to manage debilitating chronic pain/fatigue, illnesses, and PTSD.
 
Please consider donating. If you can't, please share.
I also have Patreon and a ko-fi if you want to set up monthly donations.

 
↓Please read my story below for more information↓ 
(Gallery at end of post!)
 
tldr; This fundraiser is to help me get the medical care I can access for relief and to help stabilize me so I can keep working and living my life. I was denied disability benefits on the basis that I can still "move my arms and legs"--yes, despite the fact that I can't really sit up because of how much pain it causes and how weak my core/back has become, despite my efforts at yoga and strength. I've adapted my entire life around this specific facet of my disability, including replacing my desk and office chair with a floor desk and floor chair setup so that I can type this while reclined and medicated for intense pain.

My name is New. I'm an artist and creator. Since 2011, I've been diagnosed with ulcerative colitis, chronic gastritis/esophagitis, type 2 narcolepsy, fibromyalgia, myalgic encephalomyelitis, degenerative disc disease, cervical bone spurs (osteoarthritis), two cervical disc protrusions, atlas subluxation, scoliosis, sciatica, and a handful of other comorbidities such as anemia. For years I've been "suspected" for multiple sclerosis based on symptoms and flares, with inconclusive tests. I'm now suspected for endometriosis involving my bowel, and being monitored for lymphoma originating from the colon. On top of this, I'm a neurodivergent childhood trauma/abuse/neglect survivor so I have C-PTSD and suffer from sensory processing disorder and dissociation. I'm usually in the ER and urgent care anywhere from 1-6x a year for unmanageable flare-ups (where many times I've been denied treatment because they do not believe my pain).
 
My symptoms are many, with excessive tiredness from chronic fatigue and things to manage such as nausea, weakness, insomnia, chronic fevers, depression, bleeding from the colon, dissociation, hallucinations and more. As a kid, I was always sick and in pain but had no diagnoses. By adulthood, my body buckled under it all. I've lived with debilitating chronic illness and pain for my entire adult life and I'm now even more disabled and can barely work or sit up for long without major consequences.
 
My most significant barrier is chronic pain. I live with daily debilitating nerve pain radiating from my cervical spine, thoracic spine, and pelvis into my back and extremities. I have pelvic pain from the endometriosis and ulcerative colitis that radiates down my legs and up my back, resulting in such intense flares that leave me feeling like my spine is broken. It gets worse as the day goes on, often keeping me up at night. I usually wake up at a pain level of 4.5, and by noon it's a 7. By bedtime, it can jump up to 9. I basically have period cramps in my spine 24/7, even if I'm not on my period.

I've done my best to manage all of this for so long. I've had small improvements in some areas because of my hard work at self-care and advocating for myself at doctor appointments. But even then, I'm still worn down by debilitating pain every day and I've developed new symptoms to manage over the years. In order to keep affording all of the medications, supplements, and out-of-pocket treatments that give me short-term relief, I worked up to 3 jobs at once. As you can imagine, that was incredibly hard on my body.
 
As a result of pushing myself so hard, I've gotten worse over the past several years. I've had to quit jobs and take long leaves from acting and modeling. I've also had to leave behind or seriously reduce the amount of time spent on hobbies or other means of making money such as content creation. I'm just too sick and in pain to keep up. I can only work 1-2 days a week at my current day job, and when I flare up I often have to take an entire month or more off. I can no longer sit up for more than 20 minutes at a time without the pain getting worse, so I spend most of my time on the floor, reclined, or in bed.
 
This is no longer sustainable for me. My body can't do it. The problem is, the government doesn't see me as "disabled enough" to get benefits. I've got a Patreon and ko-fi, and I work so hard on content such as vlogs, let's plays, J-Pop translations, and more, to get donations. But now I'm barely able to keep up with content even with my custom floor-desk that allows me to work reclined. I'm just in too much pain.
 
I have a disabled parking placard and a cane for bad days, but on a daily basis I now wear a back brace and posture corrector to help lessen the pressure on my spine. In 2021 I needed a wheelchair for the first time. If I sit up too much, I pay for it for several weeks to months. Running one errand immediately causes a high pain level, and driving is so painful that I have to rely on rides from friends and family most of the time. I have an entire mental health team have support for depression and PTSD caused by a lifetime of preventable pain and disability, in addition to a lifetime of trauma and abuse.
 
For the past decade, I have tried all of these different methods for my symptoms: prescription anti-depressants/stimulants/anti-seizure/muscle relaxants, opiate painkillers, chiropractor, acupuncture, cupping, gua sha, massage, trigger point therapy and injections, traction, inversion table, back brace, posture corrector, yoga, meditation, diet, Ayurveda, cryotherapy, heating pads, Epsom salt, pain relief creams, craniosacral therapy, various supplements for joint health/inflammation, cannabis. Some are helpful, but they still only give short-term minor relief.
 
In late 2021 I had an epidural steroid injection which didn't give any relief and instead caused a higher level of disability. Because of this, my old pain management doctor indicated me for spinal surgery, but the neurosurgeon I saw doesn't believe my protruding discs or bone spurs have anything to do with my neck pain. I still haven't been able to get a thoracic MRI to investigate why my endo pain makes my back feel broken.
 
My focus has shifted to addressing whatever is going on in my pelvis. It's looking like I will need removal of a complex ovarian cyst (most likely an atypical endometrioma), endometriosis excision surgery, possibly a partial hysterectomy, bowel and/or ureter resection, and removal of mesorectal lymph nodes.
 
Unfortunately, I'm not able to access this surgery with my insurance as I need to see an endometriosis specialist with a multi-disciplinary approach. So for now, I have to focus on just managing my pain as best as I can.
 
I've worked so hard to "earn" my donations all these years, and now I'm ready to say that I can't do it anymore and that I need help.
 
Thank you so much for your support. Please don't forget to share. I will post updates.
 
Gallery:
 
 
New's spine in an MRI from 2020 showing C4-5: 1.5 mm central disc protrusion and C5-6: 1 mm central disc protrusion.
Axial view showing the 1.5mm protrusion. It's small but the suspicion is that there could be an annular tear of the disc, which would mean my pain has a mechanical and chemical cause. When there is a tear, disc material leaks where it's not supposed to be, causing an inflammatory response. This could explain why after (and during) any activity, I'm in terrible pain.
 
 
New's bone spurs (osteoarthritis), which add to the pain.
 

After 5 months, finally got updated cervical spine MRI, except they didn't do contrast even though it was on the order. But the protrusions are bigger. C4-5: 2.1mm, partially effacing the ventral thecal sac resulting in mild central canal stenosis. C5-6: 1.7mm protrusion. 
 
A 2021 x-ray of New's lower spine, showing mild (but painful) scoliosis and a curve of the lower back. ̶

2022 MRI of lumbar spine actually looks good, except... see anything weird in the pelvis? My left ovary is enlarged.
 

Ultrasound has confirmed this.
 
I've had issues with this ovary, as far as I know, since age 15. Back then ultrasound revealed a complex cyst. Because of family history of endometriosis, we're thinking I also have adhesions. This could explain my deep, intense back pains and numb legs since the sciatic nerve is in there, not to mention complications with my colitis and everything in that space.  

Pelvic MRI: Complex lesion of left ovary (right side, image is flipped) compatible with endometrioma versus hemorrhagic cyst.


Anteverted uterus not leaving a space for my bladder or between the colon and cervix. Possibly explains a lot too. Thickening of endometrium has been noted on imaging since 2017. 


"Multiple prominent subcentimeter mesorectal lymph nodes that are of uncertain etiology or clinical significance."

I saw an an oncologist about the MRI findings due to risk of colon cancer, lymphoma, or leukemia. They agreed with my theory about this all being endo-related but ordered a lot of labwork and a PET scan just to be safe.






No alarming activity was detected in my slightly enlarged mesorectal lymph nodes. There was a little bit of tracer activity in the stomach, abdomen, and colon, which is likely inflammation from my colitis/IBD/endometriosis. They also noted bone islands in the pelvis. I do see some activity in my right kidney which is not so abnormal for a PET scan, however it does make me think back to a previous CT in which my right collecting system was noted as "prominent". Even though I'm clear, they still want to see me in a few months to double-check my blood count and all that. On my file they still have me as "suspected lymphoma" and "B symptoms" but again, autoimmune + endometriosis is my theory.

 
 
2016 x-ray showing degenerative disc disease and bone spurs.
 
 
2013 photo of New being tested for narcolepsy. The result was type 2 narcolepsy (formerly called narcolepsy without cataplexy or atypical narcolepsy) and severe insomnia. New has episodes of sleep paralysis often, but not as often as before she started medicating with cannabis.
 
 
New was hospitalized in 2021 for the worst IBD/colitis flare-up of her life which may have also been due to endometriosis.

Fun nerve conduction test bruise. 


Knee bruise from fall after MRI which resulted in shoulder injury and needing a sling for a few weeks.
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Organizer

New Hologram 
Organizer
Los Angeles, CA

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