Ramblings and little bits of my heart, spilled out onto the pages.
Ramblings and little bits of my heart, spilled out onto the pages.
This is a long awaited follow-up to my post about my crummy experience back in September with a new neurologist. I like to phrase things as “long awaited” to make it seem like people have actually been standing by with bated breath. Maybe you have! Or maybe you’re reading this because you’re bored and looking for some entertainment while eating your lunch or sitting in a waiting room while you get an oil change. Either way, I’m going to break it down for you.
If you’re new to the scene, feel free to check out my previous post to catch up. To summarize, I had a doctor look at my MRI scans from seven years ago and tell me that he expected to see my Multiple Sclerosis deteriorate by now to the point of me losing my function to walk. This man who had never met me and didn’t know jack about me sauntered into a room and told me in the first minute of my appointment that he was surprised that I could still walk. It still absolutely infuriates me. I’d like to start a petition for a semester or two in medical school to be spent on lessons of compassion.
Needless to say, I broke up with this doctor immediately. I took my updated MRI scans to a much more loving soul and met with her for the second time this week to review everything. For the record, I have some new lesions in my brain and spinal column since my last scans seven years ago (to be expected) but more importantly, some of them have healed and/or gone away completely. She really wanted to focus on the new spots and I really wanted to spend more time reviewing the fact that I’m a damn miracle but whatever.
Ya know, she seems like a wonderful person but I don’t plan on seeing her very often and I flat out told her that. Why do you ask? Because it’s depressing. It’s depressing to go and sit in a waiting room surrounded by disabled people who share your same disease like a reminder of what could unfold. It’s depressing to have to do a gait test where they time how long it takes you to walk from one end of the hallway to the other to test whether or not your ability to walk is slowing down. It’s depressing to use a bathroom with a pull cord that you can use in case you need help when you’re on the toilet. And it’s sure as hell depressing to have a doctor rattle off for you the 1,000 miserable, life altering things that might happen to you if you don’t take the disease modifying drugs that they suggest.
Here’s the thing- I walked down the hallway in 5 seconds. I don’t think that qualifies me for the Olympics or anything but it’s a damn good strut. I can get on and off the toilet just fine. I don’t have those 1,000 miserable, life altering things happening to me and I sure don’t want you filling my head with those terrible ideas. I am not burying my head in the sand. I sure as heck know what this disease can do and it’s not pretty but I refuse to give up control of my life. What kind of sick care system do we have where practitioners fill your head with every awful thing that could happen to you if you don’t follow their advice? I’ve been living in this body for 37 years. This body can do incredible, magical things. Have you seen me floss? Ok I don’t know how to do the floss but I’ve tried! Seriously though, I am strong and I am thriving and not because I’ve let my head be filled with the thoughts and ideals of their worst case scenarios.
Listen, folks, the real expert here is you. The only one who knows what’s healing and what’s hurting you is you. I absolutely believe in modern medicine and have the utmost respect for medical professionals but at the end of the day, your thoughts matter and how you approach your wellness matters greatly. The placebo effect works for a reason, right? Have you heard of the nocebo effect? The idea is that if you’re given a pill and told of it’s negative side effects that it’s enough to bring on those as real life symptoms. In other words, what the doctor says can have an extremely powerful effect on people. Words matter.
My choice is to continue to seek my own healing through diet, movement, alternative therapies, happiness, joy, friendship, love, meditation and on and on. I will see the doctor when it’s called for and I will kindly remind them that my approach is one to be respected because after all, I am a freaking miracle.
My body has held many stories and taken on different shapes and iterations as we’ve moved through our lifetime together. She holds triumphs and fear, trauma and joy. She’s mine and I honor her in the best way that I can, like an old friend that sometimes I take for granted. She can be defiant and a bit of a loose cannon sometimes but she’s beautiful and flawed and mine to cherish.
I’ve been thinking a lot lately about how we give away our power and the influence that it has on our well being. I’ve been sitting with how I feel that in my physical and emotional bodies. We are currently living in a time where others are trying to dictate and force methods of how we treat our bodies and trying to sell us on the right ways to take “care” of our beautiful temples. I’m here to say fuck that.
It’s everywhere you look- Instagram reels trying to sell us on beauty products to make us look younger, less wrinkly, more like the air brushed, photoshopped “influencers” we see on the screen. They’d like us to believe that these signs of age, that we have rightfully earned and worked for are somehow wrong. They’re trying to sell us foods and protocols to lose weight, disguising them as health foods and magic teas instead of telling us what’s really in them. We see folks in the fitness industry selling us beach bodies and talkin’ cardio all day, even when our nervous systems are begging for rest.
And let’s talk about them selling us medicine on tv. Why is this legal? I have made it a habit in my home to mute commercials, especially if there is a drug commercial on. In case you’re new here (welcome by the way), my body has Multiple Sclerosis and I am on my path to healing it. The thing about that is, big pharma doesn’t like the way I handle my disease. You know, the one in MY body. They want me medicated. And listen, let me be real clear. I say rock on, if you’ve chosen medication on your path to healing. You have my full support. This is in no way a judgement against anyone else’s choices. It’s just not my truth. So when those MS commercials come on, they depress me and they steal some of my power. My husband knows if one comes on, we mute that son of a gun because I don’t need anyone to dull my shine. I don’t need anyone trying to scare me and tell me what they think the progression of my disease will be because so far, I’ve defied the odds and I plan on continuing to do so.
So where is there space for you to hit the mute button? Do you make it a practice to sit with the things you are infiltrated with or do you give it your power? Are you able to discern the moments when you’re being sold something that doesn’t align for you? And hey, while we’re asking questions, are you respectful of other people’s choices even when they don’t match yours? Seems to be a real problem these days. I’m holding strong over here with My Body, My Choice.
I’m trying to make it a habit to be a crappy consumer. And honestly, that’s really going against the system, isn’t it? It’s a system that is carefully orchestrated to keep us in it’s grip. There’s a boat load of propaganda and fear mongering that keep us on the hamster wheel. It’s up to us to say enough is enough and accept our wrinkles, our folds, our path to healing, our CHOICES and to stand tall in our power.
Phew! That felt damn good to type. Join me in the conversation, I’d love to hear from you.
I’ve been sitting on this post for a while and just haven’t carved out the time to start typing. So here I go- confessions from the heart as per usual here on ye old blog. Side note- I read a book recently that was mostly in old English and I could barely handle myself. I promise not to do that here.
I’m rewinding the clock a bit to tell you about my journey over the past few months. A little backstory might help you to fully comprehend the situation.
So a couple of years ago, my husband did an elimination diet to try to figure out some health stuff and I, being the kind and amazing wife that I am (and the one who prepares most of the food in this house) participated with him. The cute thing is that when we reintroduced the food groups back in, he didn’t have any issues with them but I was not so lucky. We sat down to breakfast one morning and I was about 2 bites into some scrambled eggs, which I hadn’t had in 6 weeks, when I started to have a full blown Multiple Sclerosis/neurological situation. I had trouble getting words out, my body became numb. It scared the absolute shit out of me. And also, quite frankly, really irritated me because eggs and I had been close friends until that moment. I mean, I would eat eggs most days and in all the ways- give me a quiche, a frittata, an omelette. I want it all. But turns out, we had a toxic relationship. Eggs don’t love me like I thought they did.
So for the past 2 years, I have been avoiding eggs which let me tell you, is no easy feat. They are in so many things! Sometimes it’s just downright sad not to be able to have them. I know, I know, there are harder things in life but you try not having aioli. No fun.
Well this past December I decided it had been long enough and I was feeling good so why not try an egg again? Besides, I was missing breakfast sandwiches like whoa. So, my honey made me a breakfast sandwich which was delicious of course BUT within an hour, I was again having a full blown Multiple Sclerosis attack. This one was a doozy and the flare up lasted for 3 weeks. During that time, I was having trouble getting up off the floor, I was losing my balance, I was having trouble recalling words, I had no feeling in one side of my body, my ribs on one side felt like they were glued together. It was the worst flare up I’ve ever had. It scared me. My body scared me.
I’m sharing this with you, not for sympathy but more to share with you what I did during that time and the impact that it made. You see, I treated this situation differently than I ever have. You know what I did? I asked for help. I’m tearing up just writing this because it seems so simple and so idiotically easy and yet, it’s taken me 38 years earthside and 11 years into my healing journey to ASK.FOR.HELP.
For about a week, I did what I normally would do during a flare. I sat with the symptoms, freaked out a bit, leaned on my husband for support and I waited. And when things kept getting worse, I knew I needed to call in reinforcements. I got on the phone with my nurse practitioner and I started doing what I could to reduce inflammation. I napped, I rested, I took more baths than ever before in my life. I saw my acupuncturist, I loaded up on supplements, I asked my loved ones for support. I talked to my colleagues at Oceanside Physical Therapy about ways to help my nervous system. I cancelled plans. I got dry needling. I re-watched the documentary Heal and listened to talks by the amazing Joe Dispenza (highly recommend both).
And one of the most important things that I did was to tell you all about it. In the past I would’ve shown up and taught my classes and pretended I was fine. In an attempt to not let my disease control my life, I would’ve forged ahead and ignored my body’s screams for rest. Is that practicing what I preach? No. Is that treating myself with love and respect? No. I needed to do this differently. So I took a day off from teaching which might not seem like a big deal but it was for me. And your responses took my breath away. I was met with such kindness and warmth and it was exactly the reminder that I needed. I have such a beautiful community around me. Now all I had to do was to let all of your love and support in and that’s just what I did.
3 weeks into this intense flare, something incredible happened. I woke up on a Monday morning and I WAS FINE. Totally, completely back to normal. I’m crying again as I type this.
So the lesson for me was and is to ask for help and to be open to actually receiving it. To trust in my body’s ability to heal and to treat myself with such relentless love and admiration that it almost feels over the top. In fact, right after I finish this, I’m going to take a bath. It’s not selfish to take care of ourselves. Our nervous systems are often screaming for it.
Thank you for being part of my community that continues to help hold me up and support me. Even if all you sent were good thoughts, they were felt and are appreciated. And lastly I’ll say, F you eggs.