I live with multiple sclerosis, a chronic condition that affects close to three million people world-wide. Most of these people are on heavy duty pharmaceuticals. These drugs do not cure, but they do come with a host of side effects that can be quite debilitating. I chose to take a more holistic approach, as I wasn’t interested in ingesting something that may or may not help alleviate the symptoms I was experiencing. I took a chance. I had zero support. Everyone wanted me on the drugs. It has been four and a half years since my multiple sclerosis diagnosis. And because of my compliance and consistency on my holistic journey, I am not just living with multiple sclerosis, I am thriving. 100% odds my ass!
– Julie Blew
Below is a slightly condensed version of Chapter 3 from her new memoir “like the wind…not the color.”
Late September 2016 – early October 2016
It was in the AJ’s parking lot that I met Liz. Not actually met her, but spoke with her on the phone for the first time. It seems I do a lot of personal growth work in my car, in parking lots. I was looking for something to do. I wanted to help. Not only myself — but everyone who suffered from this chronic bull crap. There are more than half a million people in the US and almost three million in the world that live with MS, and I was going to help find a cure for all of us.
Obviously, I wasn’t a doctor or a researcher, so what could I do? I could raise money for a cure. I did a little research on charitynavigator.com, and I placed two phone calls. One to the MS Society. The second to the Race to Erase MS. Only the race responded. Liz and I chatted in the parking lot for forty-five minutes, I think I verbally vomited all over her. But she listened and welcomed me with wide open arms.
On September 15, 2016, I began my first-ever fundraiser. I was going to raise $10,000 for MS, and I had eight months to do it. How? I was going to educate my yoga community and tap everyone I knew to help me help everyone. My community was more than willing to help. I’ve never felt such love in my life. It came from everywhere. I never knew how many people knew someone that had MS, or even better, had it themselves. I was overrun with phone calls, text messages, and DMs. I had to keep a list in my journal (because of my bad brain) to contact these people once I figured out what the fuck it meant for me.
I had a mission. I had a purpose. I was going to raise money, educate my community about MS, and in the meantime, I was going to continue getting stronger. I had to be strong. You can’t beat the fuck out of a bully if you’re weak. I was going to yoga as often as I could. I was teaching a couple of classes a week. I felt like shit because I had only been home like a week after having the fuck kicked out of me. However, I was getting stronger, and I was still determined to run.
This was not going to take me down. No fucking wayJulie Blew
I used to ride my bike downhill, run a couple of miles on the canal, then ride uphill all the way home. All in all, it was a tiny, four-and-a-half-mile biathlon. It made me feel strong. And as I had been a smoker for 23 years — bad yogi, bad mom, bad everything — I was trying to rehabilitate my lungs. Running allowed me to let shit out — compared to yoga, where I must let it all go and be quiet and calm. That shit’s hard, have you met me? The aggressive angry part of me comes out when I run, so I liked it. I liked it almost as much as yoga. And when I found out I could still do it, there was nothing that could stop me — not a weak leg, not lesions on my brain, not lesions in my spine. I asked the doctors. Will running hurt? Will hot yoga melt my lesions? Will hanging upside down with the blood running to my head impact my brain. No. No. No.
September 16, 2016, the day after I spoke to Liz, I put on my running shoes and drove to the canal. I was listening to my body, and at the beginning it spoke quickly. Riding and running were out of the question, but just one was OK. I started to walk a little just to warm up, and then I ran. Really fucking slow. Like laughably slow, and I’m sure I was laughing at myself, because for the first time in my life I was allowing myself to be vulnerable, and because everything in my body still felt like shit. But I ran and ran, and I didn’t cry. I laughed. I’ve got this little fucker. I ran almost the whole way. It was probably two miles. OK. I can do this. I can do all of it, try and fucking stop me.
On the recommendation of my gynecologist, I reached out to Dr. K, an internist. I went to see Dr. K a couple days after I went running. He was incredibly interested in me as he had never really worked with an MS patient before, and he even told me he was “happy to be part of the team.” I was thrilled. I had a doctor that was going to listen, help me fight, and was interested in learning along with me. We discussed my symptoms, and that day my arm was bugging the fuck out of me. He prescribed Gabapentin, a prescription drug meant to help alleviate nerve pain. He said I should only take one a day, although he sent me home with a prescription for 360 pills. I had no idea until I filled it that day. I called him, and I was like, “You said to take one a day. Why do I have so many?” His response was that he wanted me to get “more bang for my buck.” Wow.
This was the beginning for me. Call it an enlightenment of just how many doctors push pharmaceuticals, no matter how bad the side effects. I never took it, because Useless had been on a ridiculous amount of Gabapentin daily, and I could see the numbing effect it had on him. I had yet to see the neurologist, and I’d only been home about ten days. I wasn’t about to take anything that was going to cause any other side effects as I was still dealing with mine.
Symptoms week 2 my arm is bugging me
Okay. I found my internist, although I had some reservations. I was starting to run again. I was practicing yoga. I was teaching.
Slowly, I was getting my shit together. Now I had 10k to raise. I put an Instagram-worthy picture on my donation page and posted it on social media. I raised close to a couple thousand dollars within the first few weeks. I was blown away by the love and support as donations were pouring in. My friends, my family, my yoga students, my teachers, my bosses, people that called me to tell me they had MS but no one else knew. Those were the best donations. My secret donations. I was fighting this battle for fucking everyone I could think of. And I was going to raise a shit ton of money so we could find a cure.
I had to figure out a way to fundraise. I had never done anything like this in my life. I had made donations. Written checks and given cash over the years. But I never had to raise thousands and do it all by myself. This was not a Go Fund Me. It was for my race. It was for the Center without Walls, founded by Nancy Davis 25 years ago. At the time when she was diagnosed, they told her the most she could expect from life was sitting in front of the television and probably never walking again. Ha.
Instead, this glorious beautiful badass woman brought a group of the top neurologists and doctors in the country, from the top hospitals, to work together to find a cure. By the way, Nancy does way more than walk. She rocks the MS community with her charity, her connections, and her drive. That’s what I wanted to do. Find a cure. I was going to help the doctors by raising funds. I decided I was going to be a badass warrior yoga teacher and start leading donation events. I would donate my time. I would teach a class, show everyone this did not have me, and raise money. My first event was scheduled for October. Baby steps.
On September 29, 2016, I flew to California for the first of many medical trips to see my miracle worker, Dr. Ni. Although he has treated me for many years for different reasons, this time was serious. I remember walking into his office and him giving me the biggest hug and looking at me with that question I have seen in so many eyes since my diagnosis. Why you? Sadness. And then the realization that this bully picked the wrong fucking person, and they were going to help me in any way they could.
I sat on his table. And we started to talk. He checked my pulses. Looked at my tongue. He then proceeded to put lots of needles in my body. This was my first treatment to start fighting this bitch. Yes, it’s a bitch. And we are going to take it down. He said that. Well, not the bitch part. But he told me we are going to cure me. I believe him. We sat together and discussed a plan.
I was willing to do anything anyone told me to except inject myself with horrible pharmaceuticals. That was my line. I knew it, I just hadn’t spoken it aloud. So, whatever Dr. Ni said was going to be. I had to trust someone. I didn’t have a trusted doctor. My dad was gone. My brothers, well, they were busy. And Useless was useless. I was on my own. Once again, my body would guide me and in doing so, become my greatest teacher.
Dr. Dao Ni’s recommendations 9/29/16
stay out of heat…ha
no phoenix summer…double ha
powder 2x/s day
1 banana/day for potassium
no stress…he’s funny
light on caffeine
light on alcohol
prefer me out of hot yoga
(I agreed to limit my time to 60 minutes and smother myself in cold towels)
he wasn’t going to win this one
acupuncture every other week
no weightlifting…not that I ever did
I could handle all the above. There were obviously some non-negotiable items. I still had children in Phoenix, so me leaving during the summer was not happening now. Fortunately, after all this drama, summer was over, and I wouldn’t have to worry about that for a while. I was going to drink the tea. It was gross. It smelled bad and tasted bad, but I was going to drink it. Same for the gelatin, and if bone marrow had a taste, it was gelatin in water.
I wasn’t going to fuck around and sprinkle it on my food, I was going to swallow it with water. Just make sure the water is not cold. Coagulated gelatin is fucking gross. I have lots and lots of eight-ounce bottles of water in my pantry, nice and warm.
I was going to do whatever he told me. I was going to do whatever anyone told me that understood and gave a real fuck about me. Easy peasy eating a banana. I talked to my boss, and we cut my schedule. I still wanted to teach but knew I had to take it easier, at least until I felt like I was on stable ground. I found an acupuncturist. A little woman that was two seconds from my work. Never drank a ton of caffeine, easy. Alcohol. I had to essentially become a recovering alcoholic. It was hard. But, necessary. I never drank a lot, but I drank a few nights a week for sure. Now, I save it for special occasions, and I’m OK with it. Dr. Ni does not like alcohol, and so there were rules for when I could drink. Two weeks, no symptoms? One glass of wine. OK. Cool. Next.
I contacted the acupuncturist to set up an appointment. I was nervous. As Dr. Ni had always done it, and I never felt the needles going in, ever. He knew me: my history, my family. His brother, Dr. Mao, was the last person to speak to my father before he died. But Dr. Ni was in California, and I was in Phoenix. And I had an autoimmune disorder, and how the fuck was I going to get to California every other week? I met Dr. Lu, but, before I met her, I met Nick — another miracle worker.
In the lobby there was a guy waiting to see her as well. We started to chat, and it turns out that he was a massage therapist, and his father-in-law had MS. Double score. I was starting to become twistedly excited meeting people that had and suffered and struggled with the same bullshit I did. But they got me. They understood me. And I them. When someone is fighting something invisible, others can’t possibly understand unless they have had a similar experience. And that’s the worst, feeling alone because others can’t see the “illness.” And on me, it’s pretty damn invisible.
I asked for Nick’s number, as I was always looking for massage therapists. One that was familiar with MS? Well, I wasn’t passing that by. I knew I was going to reach out to Nick after I went in to see this sweet tiny little Chinese woman. We talked. She checked my pulses, looked at my tongue and then laid me down and stuck needles in me. I’m fairly certain she did OK the first time — only because I went back. It was close to work. It reminded me a little of Dr. Ni’s office, and if Nick was there with all his background, she had to be good. OK A couple more baby steps.
I had my internist. I got to see my miracle worker. A massage therapist was about to hop on board. I had a plan. I was going to fight this, and I was starting to build my team. I have almost zero family, and the only ones here are my kids. But they’re kids. I do not need, nor want, to be their burden — not yet. Not ever, I hope. My son was in college (up the street), but I still wanted to let him be in college. My daughter was in her final year of high school. I am fiercely protective of my babies and my health. She ended up bearing the brunt of all of me. But I was on a mission to kick it. So, I tried not to put it on them. For the first time in my life, I had to be vulnerable and reach out for help. That was hard for me. I was scared. Even though I wasn’t going to die at the moment, I was a walking time bomb. At any time, my brain could start shooting fireworks, and who knew where they may land. That is no way to live. I ventured back in slowly. Listening to my body and finding my tribe. I had my children. I had Liz and the Race. I had Dr. K. I had my miracle worker. I had Nick or would soon. A plan, sort of. I had the support of my yoga community. And for the first time in my life, I had my own 100% undivided attention and support. This was not about anyone else anymore. It was just about me. My healthy life. I was not going to sacrifice that for anyone — including, my children. Although I would throw myself in front of a bus for them and get eaten by a bear, they know how I feel about bears — so I guess they come first. But, if I’m not healthy — I’m useless, too.