I really, REALLY don’t. I’m 3yrs into my diagnosis of Secondary Progressive Multiple Sclerosis, 10.10.19. When I was informed, I’ll never forget the neuro’s words, “you’ve probably had it 20 years.” I started out following doctor’s orders, advice and stockpiling medical expenses but my particular version of MS wasn’t fazed at all. What do I mean? Upon diagnosis, I had 18-20 lesions. Three months later, my lesions were in the low 20s. Three months after that, Neuro recommended chemotherapy because my MS was “soooo aggressive that she’d never seen anything like it.” The news brought me to tears of fear. I had no idea where to go, what to do, whom to ask for help. I felt alone, naked and blind. Through a long journey of talking to other MS’ers, reading loads of information, watching videos, I mean like, word-of-mouth, grapevine type of stuff, I slowly pulled bits and pieces from here & there to create my own health routine and medical plan. I am a Multiple Sclerosis Outlaw because I no longer use any drugs or medical products that can’t be purchased over the counter. I practice yoga and meditation EVERY day for routine self care and preventative maintenance. I use specific yoga for specific symptoms as well so many days, I’m yoga’ing several times. I changed my diet to eliminate land animals. I changed my religion to incorporate and include ALL beliefs. I actively use social media to search, find & follow positive energy. I drop negative energy without a heads up. I’m learning to live without expecting help from those closest to me. I blog for therapeutic purposes. I’m writing my own novel that outlines my personal transformation. I could go on and on and on listing the adaptations I make and just like now, I get sidetracked with passion discussing them. I will NOT tho! This blog is the TL of my decision to leave the umbrella of western medical.
Initial diagnosis of MS & 18-20 lesions. Start Ampyra for mobility/balance improvement.
Diagnosis of Spondylosis, degeneration of spine. Ampyra isn’t working so steroid fusions added.
Hospitalized for pneumonia and can’t start TYSABRI. No improvement with Ampyra. Fusions are AWESOME but only beneficial for 1-2days.
Hospitalized for stereopyschosis. Steroid fusions have me with suicidal thoughts, mental confusion, etc. I arrived at wrong hospital 2hrs late for fusion treatment.
2nd hospital visit with pneumonia BUT finally start TYSABRI! Lesion count is low 20s but I’m good to go.
March 1, 2017
Not feeling better. Tests show I am JC+ now, John Cunningham Virus, so I must stop TYSABRI immediately; there is sufficient evidence that the two combined are deadly for patients. Neuro wants chemotherapy and can’t answer anything about cannabis, diet, natural remedies. I am encouraged to seek treatment from pain specialist which complicates the cannabis question. Lesions? Neuro says, ‘I stopped counting at 50-something because it only confirmed how aggressive this MS is.’
January 2019 (I tried again in desperation)
Out of desperation, I tried doctors again. The most dire and concerning of my symptoms was painful, full body spasms and laboriously breathing. My family doctor wanted me to see the Neuro; yup, saaaaaaame one from earlier. To make a long story; Neuro said, “if you continue to use the marijuana, I can not treat you. It is an illegal drug and its benefits are not verified.” I couldn’t afford the MRI to update my actual ‘record of lesions’ nor could I afford her chemotherapy substitute, Ocrevus at $2k/mo.
The Decision: Night of 3.1.2017
I made the decision that night to take my health into my own hands. I was literally bankrupting my family after only 6mo of medicines, doctors, hospitals. I couldn’t work consistently and the pressure was wrecking my marriage. This was when I broke and cried over my situation. My aunt passed away from MS complications 3mo before my MS diagnosis; I missed the funeral moving into a new home. Money tight, marriage rocky, future murky and nothing was in my control so I made the decision to quit Western healthcare. It continues to evolve as I add/delete/modify with the influx of information from my own research and the testimony of MS’ers. I have a entire catalogue of ‘natural remedies’ for my physical pain, symptoms and sufferings. The mass majority is preventative. I’ve lost over 80lbs and find real purpose in helping others as a Realtor and substitute teacher. I’m passionate about writing and will spend hours blogging or writing. I must have developed a high sense of pain tolerance but I’m only aware when others bring it to my attention. I absolutely, unequivocally KNOW/TRUST/BELIEVE that I made the right decision to leave the farm (Come on, you get it!😉).
Greatest Struggles Going Forward:
It has to be the mental/emotional toll of this disease. I highly doubt that medicines could have made anything different here but I’m seriously struggling with the disability, dependency and bleakness of my impending future. It causes panic attacks, maybe anxiety because I don’t understand the difference. I feel the crushing weight of a fucking clock over my days, plans and actions. Not a clock of life vs. death but a clock of ability vs. vegetable. I’ve ALWAYS considered being disabled and dependent on others as a fate worse than death. Food? Changing me? Friendship? I’m about to cry writing about it! I’m surrounded by family and friends that have eternally expressed fear and discontent with the prospect of being a caretaker. My team has verbally expressed:
“I can’t take talking to you and knowing how bad things truly are. It physically hurts me.”
“You scare others when you discuss your conditions so you shouldn’t. Seek professional help instead.”
“People don’t reach out to you because you are soooo strong already. You don’t come off as needing help.”
“I don’t reach out because I wish for the old days for so much. When you were better and we were young.”
“I disagree with EVERYTHING you’re doing and think it’s dumb but I’m going to keep checking on you anyway because I want you to change.”
So, I bust my hump to get my head up and high by reading, writing, social media, television/movies, etc. I’m aware of the consequences when I get too low, more symptoms, more needs, less independence… In essence, I live my life on the beautiful side of ugly.
Next Related Post: Eastern Medicine (based on Netflix’s Heal)