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I need to make an important announcement, and it isn’t going..
🕑 Added 2020-04-09 01:05:19 +0000 UTC I need to make an important announcement, and it isn’t going to be a fun read, but it is important if you care about me as a person! Most people who have been following my work & my social media for any significant amount of time are familiar with the fact that I suffer from Trigeminal Neuralgia. Trigeminal Neuralgia is a chronic pain condition caused by issues with the trigeminal branch of nerves in your face. It is usually caused by some sort of pinched nerve or something similar, but it is often a life-long condition and it tends to worsen with time. The symptoms? Pain. Constant, chronic pain located in the face. Nerve pain is a little different from other types of pain. The pain itself is hard to place, as it’s not really a physical pain, but a pain caused by your nerves misfiring signals, so it can express itself in many ways. It’s very difficult to diagnose, and very difficult to treat. It’s actually nicknamed “the suicide disease” because the pain literally drives people to kill themselves to escape it. Most people with TN feel frequent sharp excruciating pains in the face, but they often get breaks between triggered “attacks”. Mine is atypical, so instead of the sharp stabbing pains, I feel a constant, dull ache. Often it is bad enough that I cannot function. When I first started hurting 4-5 years ago (2015/2016), the pain seemed to be located in my sinuses. I assumed I had a sinus infection. I took Sudafed and OTC pain relievers religiously, though they didn’t give me much relief, if any. My job performance was suffering at the restaurant I managed. I was irritable. I started to blame the stress of my job. Maybe I was clenching my teeth and giving myself tension headaches. I was close to quitting, and upper management knew it, so they fired me. I had just begun sex work as a camgirl for some extra cash a month before, so at this point I threw myself fully into my online work. Eventually, I pulled myself out of my cloud of depression and saw a primary doctor. They actually diagnosed me with a minor sinus infection, although they saw no physical symptoms, and gave me antibiotics & steroids to treat it as such. We did several rounds of antibiotics and steroids to no avail, and so we moved on to allergy tests. I had begun to fear maybe I’d developed an allergy to my pets. The allergy tests came back normal. I spent years bouncing around from doctor to doctor looking for answers. I had my wisdom teeth taken out, thinking maybe that was the answer. I moved apartments, convinced mine had a mold problem that was affecting my sinuses. I blamed my water intake. I blamed my posture. I blamed my days partying in college. I thought it must be my fault somehow. I saw an ENT (ear-nose-throat doctor), and over a period of several months, we did x-rays, a CT scan, and an MRI all on my face. Each test gave us no answers. We ruled out the possibility of nasal polyps or sinus tumors and everything else related to the ear, nose, throat, and sinuses. After finding nothing wrong with my sinuses physically, the ENT finally referred me to a neurologist. With everything else ruled out & all the tests already on hand, the neurologist was able to quickly determine it was an issue with my nerves. He diagnosed me with “atypical facial pain” or “atypical trigeminal neuralgia. He informed me that there is no cure, and that it often gets worse as the nerves continue to degenerate. There are medications to treat the condition, but they are very side-effect heavy. My neurologist put me on Amitryptiline, which is a tricyclic antidepressant. It works by dulling certain brain signals, like the ones that cause me pain. It does not work on an “as needed” basis like a painkiller; it must stay in my system at all times. If I miss a day, the pain returns, and then there is no fast relief. It takes a few days to balance out the medication in my system again. Even opiates do not work on nerve pain (also know as neuropathy). The only thing that provides relief on an as-needed basis is marijuana. It really does work. Unfortunately, I also have severe anxiety, and if I smoke too much, I have extreme panic attacks. Sometimes smoking makes me feel amazing and pain-free; sometimes it kills the pain but makes me feel like I’m dying. Sometimes it gives me panic attacks without touching the pain at all. It’s sort of a roulette, but it’s all I have when the pain breaks through the medication. Every few months, the pain starts becoming more consistent again. It also started expressing itself in different areas of the face. My sinuses ache. My browbone aches. The cartilage in my nose aches. I see my neurologist, and we increase the dose. I am currently on 4x the original dosage. I don’t know what the max dosage is, and the last increase didn’t seem to help as much as the others. I have been on this medication for a year and a half, and I know my condition has worsened and spread significantly. The thought of what it might feel like without my medication is…harrowing. About a year ago, my mom dragged me into an Upper Cervical Chiropractor. This kind of chiropractor focuses specifically on the delicate bones in the neck. I had been diagnosed with scoliosis shortly before my neuralgia diagnosis. I have always had chronic back pain, mostly muscle spasms in the lower back, but I had seen a regular chiropractor for several months consistently and mostly staved off that particular pain. Still, my mom thought it couldn’t hurt to see more of a specialist, so I agreed to a consultation with the upper cervical chiropractor. The upper cervical chiropractor did x-rays and a few other tests to measure the amount of nerve damage along my spine. The nerve damage was literally off the charts through most of my back and up through my neck. We were able to identify with the X-rays that my neck actually curves in the wrong direction. A normal human neck curves backwards in a c-curve. Mine is so delineated that it has started to curve forward. This puts pressure on the nerves and the brain stem. This misalignment is likely the source of my neuralgia and many other things. Your nerves send brain signals through your entire body; every single system can be affected. Even my issues with depression and anxiety could stem from this. My weak immune system. My inability to regulate emotions. My pain. My posture. My chronic fatigue. I have attached photographs of documents explaining the condition, the symptoms the treatment, and the cost. I need to see this specific upper cervical chiropractor to have my neck straightened out slowly over the span of a few months. I will need to visit for adjustments 2-3x a week, as well as have re-examinations and X-rays to monitor progress. The total cost of the treatment is just below $4,000 and they do not take my insurance. My mom and I both cried during this consultation, because we knew we couldn’t afford it. I’ve put it off for a year already, hoping I would start making enough to start saving…but, life hasn’t been kind to me. Yesterday, my back was hurting, as it often does. It’s been hurting me for months, and I’ve been meaning to see a chiropractor to straighten it out again, but I haven’t been able to afford it with all of my other medical expenses. Between health insurance, my neurologist, psychiatrist, therapist, and my lovely cocktail of meds, I spend at least $800/month on my health. That’s more than my rent. So I’ve been pushing my back pain to the back of my mind because honestly, I’m used to being in some sort of pain at all times. Yesterday was different though. I was sitting in my living room, and my back had been hurting so badly all day, and I just had a sort of sudden epiphany. My old back pain I mentioned before was in my lower left back. It was a muscle spasm and it had clear triggers. The pain I’ve been feeling for months now is located in my upper back, and it is absolutely not a muscle spasm. It’s not a structural pain either; it’s not an ache in my joints. It’s a burning sensation, and it’s everywhere and nowhere in my upper back at once. No pain reliever or stretches or massages can reach it. It’s neuropathy. Once I had this realization, it was so CLEAR to me that this is nerve pain. I can’t believe I didn’t put it together before. The nerve damage is spreading, and the longer I neglect getting the treatment I need, the more my nerves will degenerate and the more likely it is that the damage will be non-reversible. It could already be too late. I have thought about holding some sort of fundraiser before, but GoFundMe is notorious for shutting down sex worker fundraisers, even for legitimate causes like house fires or illness. ManyVids has a fundraiser option but you lose a large percentage of what’s given. OnlyFans gives us 80% of our earnings, so I believe this is the best place for me to process donations safely. The max fundraising goal on OnlyFans is only $1000, so I will need to raise this 5 times. If 500 people donate just $10 each, we will hit this goal. I will be posting a fundraiser on both my paid and free pages. I am of course still open to compensating donations with pre-made porn or custom content!! I never wanted people to feel sorry for me. I wanted so badly to be wholly independent and self-sufficient. I wanted so badly to make this money for myself, but the clock is ticking. I don’t want this nerve damage to be permanent. I don’t want to keep getting worse. I don’t want to hurt anymore. It’s time for me to accept that I am disabled. I am a spoonie. And I need help. I can’t do this alone anymore.
