The Unknown and the Power of Now

I have mentioned it before, and I will probably talk about it again. One of the hardest parts of this disease is the unknown. There is of course the uncertainty of my physical future. Uncertainty of how I can handle that mentally. Something as small as a tingling in my hands can be a reminder of all that. It’s a physical nuisance that brings up so much more emotionally.

Today, that trigger is the cold I feel coming on. I met with a new neurologist recently, and discussed immune suppressing medication options. Disease Modifying Therapies, DMTs, as they are called in the MS world. One of my biggest fears and hesitations of starting a DMT from the get go was that I would be sick all the time. Right now, my head feels pressurized. I’m sneezing more than normal. And I have that tell tale tickle at the back of my throat. Is this going to be my life now? The trade off for a 70% chance that I can stop new lesions is that I am in a perpetual state of body-achy, boogery hell? Maybe I will just use more hand sanitizer, I think. But then I remember that I hate hand sanitizer. It kills the bad germs, but kills all the healthy bacteria that fights the yucky stuff, too – all the “good amoebas” I call them. Our bodies should have a thriving microbiome on the inside and out. I then remember that I also struggle with the whole vaccine issue. That is a whole other side topic, and I see both sides to the argument, but I’ve always leaned toward not getting them. Then again, I’ve always been young and healthy. Both of those features are developing and mean new things to me now.

Add on top of all that a layer of stress (my mind screams, “stress! Don’t stress because that makes things worse!”) because getting sick is a tax on my immune system that can cause a flare up. Flare ups are not only new and/or worsening symptoms for an extended period of time, they can cause irreversible and serious damage to my brain, spine, bladder or eyes. However, I need to accept that I am a person with a compromised immune system. I’m going to need all the help I can get, regardless of my resistance to this can of worms that Western medicine may open up.

The fact is my immune system does not work properly as it is, and it is just about guaranteed to not work correctly in the future. So how do I deal with that without driving myself insane?

I tend to be frustratingly indecisive about EVERYTHING. Ask my husband, I can’t order lunch without over analyzing the heck out of it. I can’t order a toothbrush on Amazon without reading all 1,500 reviews. There are a lot of people out there smarter and wiser than I am, and I look to them for guidance as I learn to hone in on my own intuition and live with clarity. I am currently reading the Power of Now by Eckhart Tolle. Incredible stuff, and I highly recommend this book no matter who you are. I am working on letting go of all of the second-guessing, pain, regrets, or “I should’ve done this differentlys” from the past. I am working on not obsessing about the future and all of the possible outcomes. I am letting go of expectations that things will get better once “x” happens. Because, as the book explains, all we ever really have is now. I promise this is not just some Millennial’s surface take on life. It is not an “OMG, YOLO” live in the moment call to action that tells you to abandon all responsibilities so that you wanderlust your way around the world and abandon all cares. It is more about the health of your state of consciousness. It teaches you to think of your mind as a tool, and to not let it high jack your entire existence. Wikipedia describes it this way: “The book is intended to be a guide for day-to-day living and stresses the importance of living in the present moment and transcending thoughts of the past or future.” Sounds like just what I need.

In addition to diving into my own personal enlightenment, I’ve been doing a lot of research on medications that the neurologist recommended a couple of weeks ago. I’ve been stressing a little about all of the pros and cons about how new they are, how they may affect my body, or the possibility of getting pregnant some day and what that might do to baby. (Ahh! Don’t stress!) But all of it depends on what my blood tests say. Among other things the neurologist is looking for, one of these tests is measuring antibodies to the JC virus. Antibodies = you have it currently or have had it at some point. JC is a virus that from what I’ve gathered online about 50% to 90% of the population has, they just don’t know it. You don’t display symptoms and it just kind of hides and lives in your body. It usually only becomes a problem for people with compromised immune systems, or those that are on Disease Modifying Therapies like the drugs for MS. It is standard to test for JC virus before starting and also during these MS treatments. The problem is that being on one of these DMT meds allows the virus to break the blood brain barrier and develop into PML. PML is a brain disease that kills 25%-50% of people who get infected. Yes, that’s a big range and also why Internet research can be frustrating and feel pointless. But basically, there is a significant risk with these medications that I need to be willing to take. The doctor explained it as a calculated risk, and he’s right. I was more likely to die in a car crash driving down to Lakewood from Breckenridge than develop PML. I thought about it yesterday snowboarding. I could hit a tree and die. I’m willing to risk that for fresh powder. Still. Easy for him to say as he objectively compares stats and analyzes numbers. His arms and legs and immune system still work right, of course he is going to say go for it. He doesn’t know how this FEELS. Then I say, “Aimee, these feelings aren’t fair. He’s trying to help me.” I tell myself to ignore those reactions, it’s just my ego trying to self preserve.

I do think the timing of my most recent flare up was no accident. It was Christmas Eve and for two weeks I had been in unbearable pain. My legs and all the way up half my back felt like they were on an icy-hot fire. My skin was super sensitive to the touch. My neurologist at the time was not in the office because of the holiday, so when I called in to report how I was feeling and ask for help, I ended up connecting with a new neurologist. My old neurologist was a general neurologist and also happened to be leaving the practice in a few months. I was given a sign, I think, that I needed to start considering incorporating western medicine into my health. Turns out the new doc I was talking with is an MS specialist. Who better to get advice from on how to manage my illness moving forward? I could go down the regret road and wonder why I didn’t see an MS specialist from the beginning. But, I was happy with her and how I was tackling this whole thing. I wasn’t ready to take medication, and even if I was I would have most likely been on different meds that might not have been as effective. It’s all happening just as it should, and I am exactly where I need to be.

If you pay attention, the universe really does send signals. One of my favorite stories I’ve heard after starting this blog and talking more about what I’m going through comes from my family down in Florida. My father-in-law was recently having some health concerns of his own and was at his doctor’s office getting things checked out. For no particular reason other than he was probably thinking about me at the time, he asked the front desk manager if she knew anything about what was going on these days with MS medications. Pretty random. She was just the lady at the front desk, not in scrubs or anything. And she works at the cardiologist’s office. She said, “I have MS.” What are the chances?! She went on to explain more about the DMT she has been on, and it sounds similar to one of the two my new neurologist is recommending. She also said that she has two healthy children. She was able to conceive and raise a family and she is doing great. My heart and mind just about exploded when I heard that story. These are exactly the connections I wanted to make in sharing my journey.

Despite all of my hesitations and fears, if I stop over analyzing in my head, I know in my heart, the new doctor is right. So. I’ll go on the meds. I’ll be proactive, be a good patient and educate myself. I will do all of the research, but I will also be patient and wait for the blood test results to come in. I have to try my best to be informed but not worry about what I cannot control. More than that, actually. I’m not going to tell myself to not worry, because the emphasis there is on “not worry.” (It’s like that thing where people say, “don’t think of a pink elephant” and then you immediately think of a pink elephant). And I don’t want the words “worry” or “stress” knocking around in the ‘ol noggin so much. Instead, I am going to find my inner peace. I am going to actively trust that it will unfold as it should. Those are my mantras.

I am making the effort to LET GO of the worry because as I’ve seen some of the results come through in my online patient portal I’m realizing I have no clue what they mean. I think I’m JC positive, but without the interpretation from the doctor I can’t say for sure. Nor do I know what it means for my treatment options. Did I do all the medication research for nothing? Can I still take the meds because relatively speaking my antibody levels are low? Do I even want to take the medication now? DOUBT DOUBT DOUBT sprouts up so easily. I was nervous about PML assuming I was going to be negative for JC virus. If it’s still okay per whatever thresholds there might be, is it crazy to willingly take that risk? I am trying to be the observer of these questions right now and not let them consume me. And so, I wait. I wait to get that call from the doctor to talk about what my blood test results mean. It’s Sunday, not much I can do about it right now. Control the controllable. Plus, it’s time to go play some hockey. One of my favorite ways to embrace the now. I’m too focused on chasing that puck around and not smashing into other people on accident to over analyze everything. I’ll keep you posted on what the doctor says. Wish me luck.

The Intro

Multiple Sclerosis. Shortened to MS. What does that mean? Oh, so many things. A couple of really scary words to come out of your doctor’s mouth, first of all. At first hearing those words I was in shock. My mind immediately went to the only thing I knew about MS – the worst case scenario of a family friend who the last time I saw was barely walking with a cane and surely bound for a wheel chair. She had very little eye sight. Bladder problems. She slept all the time. This vision has evolved over time as the more people I’ve told shared with me that their Mom, their friend, their neighbor has it and they are “just fine.” We’ll talk about that in more detail down the road, but yes, I’ve learned that humans with MS are out there and living “normal” functioning lives. So MS doesn’t have to mean My Sickness anymore. It doesn’t have to mean My Slow decline. In more recent months MS has flourished really into a deeper connection with My Spirituality. It is really hard, I am not going to lie. It is a physical and emotional roller coaster, but in many ways I am incredibly grateful for the lessons it has taught me about getting in tune with my physical body, finding a deeper connection to my spirituality, living my life with a higher level of heart and soul, and getting a little older (and hopefully wiser) along the way. Without further ado, here is the rundown on how this all started.

My symptoms started somewhere around 2015. I was tired a lot, had some lower back pain and had a weird little black spot in my eye that would follow my vision – a “floater” apparently. It only lasted a couple of days and wasn’t painful or disrupting my vision enough to be concerning. The fatigue was getting overwhelming enough that even driving between Breckenridge and Dillon (a 15 minute trek) I would have to pull over, set an alarm, and close my eye for 15 minutes. I was literally so tired I felt like I would fall asleep at the wheel most days. What was most alarming was the intense pins and needles sensation I started getting that winter. Just walking a few blocks from my office to my car at the end of the work day would leave both my legs feeling completely numb and tingling to the point of pain and lack of complete control. I would have to wait a few minutes for it to pass before I could drive. That didn’t seem like a normal thing to be experiencing, so I made an appointment with my doctor. In discussing my symptoms, we decided that maybe I was a little low in B vitamins and that B12 shots would help my energy levels. My low back pain could be genetic, my dad suffers from sciatica so we decided to do an MRI on my spine. The leg numbness was weird, but I was otherwise super healthy, so heck, let’s send Aimee to the Ophthalmologist to rule out MS and then we’ll keep going down the line to see what’s going on. That referral to the eye doctor was so unimportant to me that it stayed on my fridge for about 2 months before my husband finally said, “Hey, what’s this? You should probably go get that checked out.” “Yeah, yeah, I’ll make an appointment tomorrow…”

In the next week or so I visited the Ophthalmologist for the first time. My eyes were in perfect shape, no glasses needed and I showed no typical signs that someone with MS would have. There was one question he asked me, which turned out to be quite important. “Do you get blurry vision when you get out of the hot tub or shower?” I had to think about it. Yeah, I guess I did now that he mentioned it. It certainly wasn’t one of my chief complaints at the time, so I’m glad he had the wherewithal to ask. Apparently it is common for folks with MS to have blurry vision and for other symptoms to worsen when their body temperature rises. He added “brain” to my MRI order. After they shoved a very claustrophobic Aimee in a tube for a couple of hours and had some MRI images to analyse, I got a call from the doctor’s office saying my lower back looked fine. They couldn’t discuss the brain results with me on the phone and were referring me to Neurology. I still didn’t think anything of it, made my appointment down in Denver with a Neurologist in my insurance network and on a sunny day in June 2016 heard a very smart lady tell me, “You have MS.”

What? Completely unfathomable. Not at all what I was expecting to hear. What about my Dad’s sciatica? What do you mean I have MS? I have no family history and I love eating vegetables. I’m healthy, god dammit! I looked at the MRI images with her as she explained that the location and patterning of the fluffy little white spots in the picture were very typical of someone with MS. I had also described to her an electric, zipping line of tingling that shot down my spine when I put my chin down toward my chest in some yoga poses lately. That is called L’Hermitte’s sign, she said. Also common in MS patients. She said I could get a second opinion, but that she was positive I had MS. Those little white spots in my brain, and also down along my spine, were (and are) lesions. They are damaged, wounded areas in my Central Nervous System that don’t typically go away. “Sclerosis” technically means a hardening of body tissue, or scar tissue. Thus Multiple Sclerosis can be thought of as “Multiple Scarring.”

How does this happen? MS is considered an auto-immune disease, and for some unknown reason the body decides to start attacking itself. In MS, the immune system attacks the sheath or coating aka ‘myelin’ that surrounds the nerve cells in the brain and spinal cord. Think of the plastic coating around wires that mice like to chew through. This myelin sheath is what your body’s electrical impulses travel through and make your nerves work as they are supposed to. When your immune system attacks it, I can tell you with confidence that they don’t work right. I often experience numbness, tingling, nephropathy/nerve pain that I can only describe as an intense icy/hot sensation and skin sensitivity like I’ve been stung by a jelly fish that occurs in many parts of my body including my feet, legs, midsection, up my spine, down my arms and into my hands. Sometimes when I’m trying to sleep my entire body likes to have a slight buzzing feeling that tends to be quite distracting. I’m tired a lot mostly because I assume my body is constantly attacking itself. Imbalance and weakness sometimes prohibit me from enjoying hockey, yoga, running, or snowboarding at the levels I used to. The worst part is the unknown. I don’t know if these are things I have to deal with sporadically (manageable) or if they will get dramatically worse in intensity and persistence. It can be really depressing to have a flare up because it’s an unavoidable reminder that my body isn’t working perfectly, and may get worse in the future.

Sounds fun, right? My symptoms have evolved over time. Every day is a little different, and as I mentioned, my gratitude for paying attention to my body, connecting with my mind and spirit, getting older in general have only grown with my diagnosis. I’ve had many realizations in the past few years tied to MS, but my biggest to date is that I must find and love myself because at the end of the day all I have is my “being.” This has been made incredibly clear by the physical pain I’ve had and knowing that I have the potential to end up in a wheel chair or be physically limited enough to not enjoy activities I do now. I best be okay with the human I am on the inside if my exterior abilities start to fail me. Thank goodness my value as a person isn’t determined by how fast I can hike up a mountain, eh?

It has taken me a few years to work through the acceptance that I have MS. I was nervous to tell people for a long time. I needed some time to process but I also didn’t want people to judge me or think of me differently and only see me as my diagnosis or say “she skates pretty good for someone with MS.” This disease has been a big part of my life, but now it’s front and center. I am not only starting to accept it, but embrace it. I don’t want to be defined only by my diagnosis, but I also can’t pretend it isn’t just as big a piece of my life as who I married or where I come from. It is as unchangeable as how tall I am and will inevitably effect me, the decisions I make, and how I experience life. I was nervous that people would think I was making excuses or not believe me because of my positive attitude. Not to mention how hard it is to articulate how I am feeling mentally or physically at any given moment. I also didn’t, and don’t, want people to worry. I want to make sure that in sharing my story that people know it’s okay to feel what you feel inside, set boundaries (I’m learning!) but still be you. For those of you that know me, I guess I just wasn’t sure where to start with all that, so if you haven’t felt like you’ve gotten the whole story, it’s not personal. I love you. I’m working through all this and hopefully this blog will give you insight into what makes me tick. Know that I am okay. I appreciate your support more than I can put into words.

💛

Back to that day at the doctor’s office. I was immediately recommended a couple of medications. (Tecfidera or Copaxone.) I did some research and at the time decided that the negative side effects didn’t outweigh the benefits. So I delved into alternative medicine and started there in my wheel house, with what I was comfortable with. Acupuncture/herbs and yoga worked quite well for my first 3 years with MS. I felt very strongly that I didn’t want to be on immune suppressors and be sick all the time. I didn’t want to hurt my body even more. I wanted to work WITH my body through this and not attack it back, even though it was betraying me in a way. I also read a lot of stories about progressive MS taking over when western medicine only was involved. Diet, what you put into and nourish your body with (Food Is Medicine!), exercise and lifestyle choices made a dramatic improvement and that people previously in wheel chairs are out and about walking again (more on the Wahls Protocol later). Flash forward to December 2019 – I felt like such a failure when my biggest flare up yet hit. I was served a hardcore dose of reality that a positive outlook and alternative medicine wasn’t enough. But then I realized, why have I been assuming that western and eastern medicine are mutually exclusive? Why can’t there be a way to integrate both? I’m excited to share with you the collaborative approach I have been taking and what has and hasn’t worked for me.

Putting all this experience into a human context is important to me. I get the magazines, I’ve watched the webinars, spent hours online researching, but I haven’t seen much out there that I’ve felt is a real human story with substance, that I can connect and relate to as someone living with MS. There are so many articles out there that are just surface fluff, a few stats thrown in like I don’t already know that heat is a trigger, or more women with MS are getting pregnant these days because more people with MS tend to be women of child bearing age. Who are the people behind those numbers? I haven’t found stories that aren’t heavily edited that I can relate to and I’ve been craving something real, a human connection. (How many times can I say “human” here?) I hope that my words are that connection for you. This is my journey and I know yours, or a loved one, or an acquaintance’s may be much different, but my hope is that you will leave this blog inspired. I hope we are brought together to discuss what works and what doesn’t, as this is an ever-changing and unfolding process. If one sentence resonates with one human that impacts their life in a positive way, then I’ve achieved my purpose. The more I tell people about my diagnosis, the more I hear of a friend, a mom, a neighbor who has MS or another auto-immune disease underlying their entire lives. I’ve had heartfelt and helpful conversations with some of these people. Let’s do that here.

Let’s come together and connect. Let’s change how we and those around us perceive this journey with MS. Or life in general, man! I want to know your story and how you and those around you feel. My writing may meander, be repetitive at times, and feel like a giant endless stream of consciousness, but it is quite literally an extension of my mind and body. I’ll do my best to organize my thoughts into coherent meaningful portrayals of my journey. May you be inspired, empowered, and encouraged as you make each step along your own path.

🙏

Side note: I am not a medical professional or doctor. I am just putting my experiences into words that you can hopefully pull from and use what works for you. Always consult with your trusted medical professionals and support team that surrounds you before making life-altering decisions. And please, please, please feel free to comment and share as much or as little as you’d like about your personal experiences. Your words will fall on non-judgmental and loving ears. This will be cathartic for me, I’m sure, but I also want those who know me to understand me a little better. I also hope to make new connections – there are a lot of us out there working our way through an auto-immune disease or chronic condition and we are stronger together. Do not hesitate to pass this blog link along to a friend or coworker if you think it may spark a bit of hope, joy, inspiration, or help a fellow human in anyway. Thank you for reading, and all the best to you and your journey. – All the love, Aimee


The First Blog Post

And So It Begins…

Be yourself; Everyone else is already taken.

— Oscar Wilde.

Okay. Here we go! I decided to write a blog to share my story in the hopes that it’ll help others along their own paths. Get started with “The Intro” post for a little background and subscribe below to get notified when I add new updates.

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Living life with a chronic illness is definitely not easy. But I do my best to push through all the barriers this illness puts in front of me! In my heart and mind, I believe maintaining a positive outlook on all situations in life will carry us through to much better times! I hope you find the information that I provide both helpful and inspirational!

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